tag:blogger.com,1999:blog-30334609369771203322024-02-21T01:44:46.865-05:00Baby Bee's JourneyOn February 2, 2012, our unborn baby girl Bee was diagnosed with a congenital diaphragmatic hernia (CDH). This is going to be a journey.Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.comBlogger75125tag:blogger.com,1999:blog-3033460936977120332.post-6183663004971363472014-05-15T21:39:00.002-04:002014-05-15T21:39:14.452-04:00A memorable Easter<div class="separator" style="clear: both; text-align: center;">
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Bonnie had a rough week around Easter. She's doing *great* now, and if you want the abbreviated version of this story (which, thank you Jesus, has a happy ending), skip to the end. Otherwise, hang on tight for the play-by-play.<br />
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Friday, April 18th: <br />
It was Good Friday, so daycare was closed. I had the kids with me at home for the day, and it was pretty uneventful until dinnertime. Bonnie was eating and did a little gag/cough maneuver that ended in some vomiting. Nothing major, and she does that on occasion, so no big deal. After that, though, she started acting like she didn't feel great, so I put her to bed early. <br />
About 15 minutes later, she was throwing up in her bed. I thought, "Oh great, here with we go with another stomach virus." Changed her clothes, sheets, etc. Back to bed. Another 15-20 minutes later, throwing up again. Change sheets, clothes, etc., and back to bed. Repeat every 20-30 minutes for the next 3 hours. Jonathan and I discussed taking her to the ER but decided to see how she did overnight. <br />
She's had a couple stomach bugs recently, and every time she starts vomiting, I worry that it's a bowel obstruction (a relatively common complication for CDH kids due to scar tissue from having their guts manipulated during repair surgery). The thought definitely crossed my mind that night, but she had had a normal bowel movement earlier in the day, so I figured the likelihood of bowel obstruction was probably low.<br />
She slept okay-ish through the night, but would cry and whimper occasionally. <br />
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Saturday, April 19th:<br />
She woke up around 6:30 and wanted something to drink. She only ever drinks 5-15 ccs (less than half an ounce) at a time, so she had a tiny bit of water by mouth. She seemed really sleepy still, so I rocked her for a little bit and gave her small amounts of water through her tube while she drifted back to sleep. About 30 minutes and 3 ounces of water later, I tried to lay her back down in her bed. All the water came back up.<br />
Went to the pediatrician and said, "I just need you to tell me this isn't a bowel obstruction." She felt like it was just a stomach virus (based on how suddenly it came on), but said if she started acting more lethargic or started vomiting bile (bright green), to take her to the ER.<br />
The rest of the day, she just wanted me to hold her, and she slept a good bit of the time. She had no interest in eating, but I gave her 5 ccs of water every so often just to keep her hydrated, and she didn't throw up for a good chunk of the day. By mid-afternoon, I thought it would be safe to give her 5 ccs of water every 5 minutes (that's two ounces an hour). I was holding her and she was in and out of sleep, but this genius plan of rehydration went well for about an hour. Around that time, Henry and Jonathan got home. When she heard their voices, she perked up and hopped out of my lap to see them. And then she threw up. Bright green.<br />
So off to the ER we went. Everybody who worked there got my spiel about her history of CDH, how she's at higher risk for bowel obstruction, etc etc, and how we weren't leaving until somebody proved to me that it wasn't that. The ER doc checked her out and mashed on her belly, which didn't seem to be painful, and on that basis he felt like it wasn't an obstruction. He gave her some IV fluids and they did an X-ray. It came back somewhere between "reassuring" and "inconclusive," depending on who you were talking to. At some point during our ER visit, she threw up (bright green) again. She got a dose of Zofran (anti-nausea drug), which seemed to help her rest a little bit. Around 11:00 p.m., ER doc decided she needed to stay overnight for observation.<br />
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<tr><td class="tr-caption" style="text-align: center;">Sweet girl getting fluids in the ER</td></tr>
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Sunday, April 20th:<br />
She got admitted to the pediatric floor right at midnight. Refused to let me put her down, so she slept next to me on the little pull-out chair/bed thing that's exactly as comfortable as you would expect. I'm pretty sure I didn't sleep at all that night, because she was squirmy and crying in her sleep, and around 3 a.m. threw up again. When the sun came up I made a mental note of the fact that it was Easter Sunday and probably a lot of people around town were up and going to sunrise services right at that moment...there was some strange comfort in that.<br />
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Around 7 a.m. the surgery resident came in and said he noticed a couple things on the x-ray that he was concerned about. My thought was that of course her x-ray is screwy, since her guts were all rearranged when her diaphragm was repaired. But all her old x-rays are three hours away in the hospital where she was born, so he wouldn't have been able to see them to compare. Anyway, he said he'd check with the attending surgeon and we'd go from there. Meanwhile, Bonnie throws up (again, bile) a couple more times and is generally acting like she feels terrible. The general consensus at this point is that it's a stomach virus, which can cause decreased motility of the intestines...which then leads to stomach not emptying, which leads to vomiting. Interesting thing is that she hadn't had anything to eat or drink by mouth (or tube) in about 18 hours, but she continued to throw up. Her IV fluids were running at a good solid rate, but she wasn't peeing either. I asked the surgeon about this later, and he said that when your GI tract is inflamed, it will steal water from your veins (basically). Hence the ongoing vomiting and lack of pee.</div>
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At some point in the late morning they took her down for an upper GI (give her some contrast liquid via gtube and watch on x-ray to see where it goes). During that procedure, the radiologist seemed to think things were moving along fairly well. At hour intervals afterwards, they took another x-ray to see how things were moving.<br />
I suspected something was up because the surgeon came in a few times and would just watch Bonnie for a few minutes at a time. But I *knew* things weren't going great when he came in, sat down in a chair, and asked the nurse to turn the TV off. He had talked with the surgeon on call in Charleston and compared notes on previous x-rays versus today's. "We think she reherniated." Wait wait wait WHAT?! Tears. Losing it. "I hope I'm wrong. We're going to get one more x-ray to be sure. But we might be looking at a transfer to MUSC." (To review, we live 3 hours away from where Bonnie was born and had her initial repair surgery. The thinking here is that it would be better for her original surgeon to do a second repair.)<br />
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<tr><td class="tr-caption" style="text-align: center;">Not doing well.</td></tr>
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So that "one more x-ray" came back and confirmed that she did indeed reherniate. A few loops of intestine had gone through the hole in her diaphragm and gotten stuck, causing a bowel obstruction. (Stomach virus theory was now abandoned.) It's never good when body parts get trapped. Blood supply can get cut off, tissue can die. In the case of intestines, if a part dies, it can rupture, and then you're *really* in trouble.<br />
The question of whether or not to transport to Charleston was resolved when the surgeon decided (based on increasing lethargy and little to no urine output) that Bonnie wasn't stable enough to transport. I.e., she needed to get to surgery as soon as possible and would lose too much time in the transport process. She was *sick*.<br />
She went back to surgery around 4 p.m., and we were told it could take awhile. We got updates every 45 minutes or so, and by 9 p.m., she was in recovery and we were chatting with the surgeon about how everything went as well as it could have. None of the scary complications he had warned us about. The incision was technically in her chest (as opposed to her abdomen), but from a lay person's perspective, it's more on her side--wraps around from the back to the front. He was able to get her bowel back where it was supposed to be and stitch her diaphragm back up.<br />
When we got to see her in PICU, it was about 11 p.m., and she looked like this:</div>
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It wasn't super fun to see her with all this medical paraphernalia again, but unlike her NICU days, this was a recover-from-surgery situation versus a fight-for-your-life situation. Plus, she actually looked better to me at this point than she had prior to surgery. Her color was better, and she seemed so much more peaceful. A lot of that might have been the propofol (happy sleep drug), but whatever.</div>
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Monday, April 21st:</div>
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Chick slept all day. Thank you happy sleep drugs. The original plan was to extubate her and let her wake up, but they decided to let her heal and rest for one more day.</div>
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Tuesday, April 22nd:</div>
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Wake up day! The surgery resident (who, surprisingly, I really liked) pulled her chest tube in the morning, and around lunchtime they took her off the sleepy drugs, extubated her, and let her wake up. Here's a picture of Mama snuggles when she was still pretty groggy:</div>
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A couple hours after the above picture was taken, our amazing child decided she wanted to go for a walk:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1UFuanJqVGZnM3kE-HgzCTu1cRFLCiMTWdzlPD48s8exa7Yd2tcrQeJ31jP3hyphenhyphenyIlvBnUnLPeaUirj2vn2u8ZIBJkkzRfMWNVbmCsRTNkTgmxwu6m6NT-xuwteFCrdpnV2SKxFMs5071T/s1600/hospital6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" closure_lm_996383="null" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1UFuanJqVGZnM3kE-HgzCTu1cRFLCiMTWdzlPD48s8exa7Yd2tcrQeJ31jP3hyphenhyphenyIlvBnUnLPeaUirj2vn2u8ZIBJkkzRfMWNVbmCsRTNkTgmxwu6m6NT-xuwteFCrdpnV2SKxFMs5071T/s1600/hospital6.jpg" height="640" width="480" yta="true" /></a></div>
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And check out the aquarium:</div>
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Later that afternoon she got moved from PICU to the pediatric surgery floor, and big brother Henry came to visit:</div>
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Unfortunately, she didn't sleep very much that night. Like maybe 3 hours.</div>
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Wednesday, April 23rd:</div>
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And she didn't nap on this day. By bedtime, she was a zombie. It was actually a little scary. Thankfully, she passed out at bedtime and slept reeeeally well.</div>
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Thursday, April 24th:</div>
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Woke up to this precious face.</div>
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And in even better news, the surgeon said she could eat! What better way to break a 6 day fast than with hospital peas? Yummy.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbnWdogy8_4yzwJdSyLa6q2pdviTUxMdsdGH-TChUNnPjJPjeySNAA4WY2tJLmONLAAdnmy_1g6LXVOG3TRzqzi1PG-U9bIIiVKHxC1sN3E4_nnEOcgGjpd5YewcWyDpfuOvvR7J0IFb1H/s1600/hospital12.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" closure_lm_996383="null" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbnWdogy8_4yzwJdSyLa6q2pdviTUxMdsdGH-TChUNnPjJPjeySNAA4WY2tJLmONLAAdnmy_1g6LXVOG3TRzqzi1PG-U9bIIiVKHxC1sN3E4_nnEOcgGjpd5YewcWyDpfuOvvR7J0IFb1H/s1600/hospital12.jpg" height="640" width="478" yta="true" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Okay, seriously? How cute is she??</td></tr>
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Friday, April 25th:</div>
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Wasn't expecting it, but mid-afternoon, her surgeon came in and asked if we wanted to go home. Yes indeed! Here we are all set to bust out.</div>
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From then til now:</div>
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It took until about ten days post-op for her to get off the pain meds, but after that, chick was totally back to her old self. Eating really well, even drinking more. Climbing on and jumping off furniture. Her recovery has been amazing.</div>
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Some more thoughts:</div>
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We could not have loved Bonnie's surgeon more. Dr. Jimmy Green. If you're in Greenville (and a kid, and need surgery), he's your man. He prayed with us before and after surgery, and he took *such* good care of her. Even though it was scary how sick she got (which kept her from being transported to MUSC), we were so blessed by having Dr. Green as her surgeon.</div>
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A few people have commented how it was unfortunate that all this went down on Easter Sunday. But really, it was probably the best day for it to happen. If God raised His son from the dead, He was certainly going to watch out for Bonnie.</div>
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If you're on Facebook, you already lived through this with us. But I want to say another thank you to everyone who loved Bonnie and us so well. Local CDH mama friends (love y'all!), church folks, coworkers, friends. Thank you for your visits, prayers, snacks, dinners, and gifts. It was all so very appreciated.</div>
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****And the short version, as promised. Bonnie's diaphragm reherniated, causing a bowel obstruction. She had to have repair surgery on Easter Sunday. By that Friday, she was well enough to go home. Glory to God.****</div>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com4tag:blogger.com,1999:blog-3033460936977120332.post-90285145334151729412014-02-02T15:49:00.000-05:002014-02-02T15:49:25.764-05:00Another February 2ndFebruary 2nd has been an important day to me for two years now. It's the day in 2012 that Bonnie was <a href="http://babybeehelms.blogspot.com/2012/02/not-blogging-type-but-here-we-are.html">diagnosed with CDH</a>, when she looked something like this:<div>
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<img height="281" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNt_AXBP_s_0hw4YlCIVeNgd1ijk8a24KFn-V7wu6OUMI8qcyHMNbAzg6JXioneePk_0m8O8HZc9JKT4pw1-yRZKj44OBiwq33xivLCUoFS0ZI4PGQpRanS3RQmY6vdLv1KOKb2butl1Rs/s400/21weeks1.jpg" width="400" /></div>
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She's been through a thing or two since then, and has now become my crazy post-nap hair, cracker-eating sofa companion. These are from today. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_cXVHFODb3wGpqofMuxNW03btD1zjcpMsxrtDADTae5XkCsKODltPfrNe3CGqbe4Wyp4oq23waLJgE_JeBeSgEMg0s4if5YiA9Xdiq5F2i5KJ2xXGsWZceWDBLwONkCJNV7NfnD34aNUR/s1600/2014January+069.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_cXVHFODb3wGpqofMuxNW03btD1zjcpMsxrtDADTae5XkCsKODltPfrNe3CGqbe4Wyp4oq23waLJgE_JeBeSgEMg0s4if5YiA9Xdiq5F2i5KJ2xXGsWZceWDBLwONkCJNV7NfnD34aNUR/s1600/2014January+069.JPG" height="400" width="263" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLVbICCahRens-81aO7MqtZTvsrFL9iUuYs17sgSz1J_eehJszejmpk_skuLQYRTZNMlCfzdvIgugUC9VAaxht5nInQq9gYuMG1d0sDwUBy6-npwjdEFzi9p7KmU3FHyH9yWSiw01kSUWl/s1600/2014January+070.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLVbICCahRens-81aO7MqtZTvsrFL9iUuYs17sgSz1J_eehJszejmpk_skuLQYRTZNMlCfzdvIgugUC9VAaxht5nInQq9gYuMG1d0sDwUBy6-npwjdEFzi9p7KmU3FHyH9yWSiw01kSUWl/s1600/2014January+070.JPG" height="400" width="263" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPnFH3d2Sh3jSEX4iuYU40i2JUCQSvcKA_WBl2SkKwY75ijJ5zlkqnuTLpvdFtAijKv5mmW58oZjTyg6-y7DbX4AAv2mbjoigAEvgV-6vcPAa5H_Ufr-dakt8AAfltCf00_R9PUMdLMElU/s1600/2014January+071.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPnFH3d2Sh3jSEX4iuYU40i2JUCQSvcKA_WBl2SkKwY75ijJ5zlkqnuTLpvdFtAijKv5mmW58oZjTyg6-y7DbX4AAv2mbjoigAEvgV-6vcPAa5H_Ufr-dakt8AAfltCf00_R9PUMdLMElU/s1600/2014January+071.JPG" height="263" width="400" /></a></div>
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She's been doing pretty well since my last post, with a cold or ear infection thrown in here and there. That's one side effect of being in daycare, but she's handled her illnesses like a champ (i.e. no need for extra oxygen or hospitalization) and is learning a ton, so I think it's worth it. </div>
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On a daily basis, she reminds us why we've nicknamed her the Villain. She's a climber and gets into everything (loves to knock the clock off the TV stand to where we can't reach it, if you want one example), and when we try to correct her or tell her no, she starts giggling about it. 100% villain behavior. Not real sure how that's going to work when she's a teenager, but we'll cross that bridge when we get to it. She's also got a temper and can throw a *serious* tantrum. She's still a little behind on her language skills, which causes frustration, which leads to a lot of screaming and stomping when we can't figure out what she wants. She's in speech therapy and is making some good progress, so hopefully her frustration will decrease as her language increases.</div>
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Having said all that, she is so much fun. She loves animals and making animal sounds. Her favorite seems to be cats--"mao! mao!" (as in Chairman). My personal favorite is her snake sound--"tssss!" She also loves to dance. She wants to do anything her brother is doing. Four seconds ago, for example, she was bonking me on the head with a piece of cardboard because she had just seen him do it. She loves books, loves her blanket, and is a champion sleeper.</div>
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Here are a few more recent photos.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1mYOqu9StWHQ6bDLR5O32s6q4a9_DjkoMjMMXnEIoA17wFXUvVssEQIA_lPg-0vOyy6ndiVQ4YZgIgzHP7o2guRkZLX59UB8gADWaFzJnvkmewQfCtFd2EYYAyurd6wAEDWqnCKPrR-XU/s1600/2013Deceber+007.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1mYOqu9StWHQ6bDLR5O32s6q4a9_DjkoMjMMXnEIoA17wFXUvVssEQIA_lPg-0vOyy6ndiVQ4YZgIgzHP7o2guRkZLX59UB8gADWaFzJnvkmewQfCtFd2EYYAyurd6wAEDWqnCKPrR-XU/s1600/2013Deceber+007.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Henry was in time out for some infraction against Bonnie. She came over to visit.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRhDBNlfHaq8LmN-P2c5jjE4jWr1mu3_B2tzo84P0rS953r5_XUsAs6Cm8HtH0meTyryCiK_FQlf1hVnLKb7Y9mL-IHZC3nuGyeQsAiqNqbzUQAcCEIcQr6796KezFJ-4JGC7I2K-jdhLx/s1600/2013Deceber+027.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRhDBNlfHaq8LmN-P2c5jjE4jWr1mu3_B2tzo84P0rS953r5_XUsAs6Cm8HtH0meTyryCiK_FQlf1hVnLKb7Y9mL-IHZC3nuGyeQsAiqNqbzUQAcCEIcQr6796KezFJ-4JGC7I2K-jdhLx/s1600/2013Deceber+027.JPG" height="263" width="400" /></a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj82oEpwhTM-KOzoipyxQQKg2iWtNye5cOy1vSeI6ulySSTeULQWoGAqItZ1UiGUJHExxyKBzPchJBRJhv-esAHuR3Uf_LYFmIAWzFtMu6eCv_UJyQwBknzIB6k30KI8-u5mXMfvRP07fRY/s1600/2013lateNovembertoearlyDecember+072.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj82oEpwhTM-KOzoipyxQQKg2iWtNye5cOy1vSeI6ulySSTeULQWoGAqItZ1UiGUJHExxyKBzPchJBRJhv-esAHuR3Uf_LYFmIAWzFtMu6eCv_UJyQwBknzIB6k30KI8-u5mXMfvRP07fRY/s1600/2013lateNovembertoearlyDecember+072.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Helping out with the Christmas lights.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_bzdTIrQZVUwOf3mOASGGkKtfA3wTytGIZ7_va-21V-NMFp1e9OCD79IZfbIs32b784d89GwKj4uQa0_FvKBuT_0Nnk1JG1JjCSoyEL-yCphQhJKjcpGMWk9fI6w_0CK2wc1wBL1iqT-b/s1600/2013lateNovembertoearlyDecember+075.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_bzdTIrQZVUwOf3mOASGGkKtfA3wTytGIZ7_va-21V-NMFp1e9OCD79IZfbIs32b784d89GwKj4uQa0_FvKBuT_0Nnk1JG1JjCSoyEL-yCphQhJKjcpGMWk9fI6w_0CK2wc1wBL1iqT-b/s1600/2013lateNovembertoearlyDecember+075.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie and Zander.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZUVISsGDw4wu7rFrJNohNX417NVPzxGnh8DUkrX1YOSx6tt51BPUTmOcAfwj6zCJa5wylqkFGxyrar67_tmd9oa1kZ8d2KuOLDKTOezPJkkbUxKa3WSSeO4AhFBS7awXgDvLtdEjQwx0-/s1600/2013lateNovembertoearlyDecember+090.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZUVISsGDw4wu7rFrJNohNX417NVPzxGnh8DUkrX1YOSx6tt51BPUTmOcAfwj6zCJa5wylqkFGxyrar67_tmd9oa1kZ8d2KuOLDKTOezPJkkbUxKa3WSSeO4AhFBS7awXgDvLtdEjQwx0-/s1600/2013lateNovembertoearlyDecember+090.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mama and Bonnie.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidBU1YaUGUhKO1Az4awsl-uYuuwhEgSGjOaOMQXaaq9BEqJcemU6r-mjT4xHkiJDzSsNBj2NaLpwb1F5pLB8FEcMJc1RT9iX-Oyj_eFn7CHbv8qa5LmtQwiQn5eb3nErnfKusd4j0zWBIl/s1600/2013lateNovembertoearlyDecember+104.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidBU1YaUGUhKO1Az4awsl-uYuuwhEgSGjOaOMQXaaq9BEqJcemU6r-mjT4xHkiJDzSsNBj2NaLpwb1F5pLB8FEcMJc1RT9iX-Oyj_eFn7CHbv8qa5LmtQwiQn5eb3nErnfKusd4j0zWBIl/s1600/2013lateNovembertoearlyDecember+104.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Furious baby.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKpAhUwuOt13ykn-ubmgLfo0G3WXl4TeSjzSCkSWr-e5y7Zg_BkTTnWfVGGHJHwbrehM7LmEFaMuXMeuVqlsqeckraWnsdXjJfXSc-tYw4omgZGdRlJ8LsI86xEyg4N4VXZUdueVRrrIkB/s1600/2013lateNovembertoearlyDecember+125.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKpAhUwuOt13ykn-ubmgLfo0G3WXl4TeSjzSCkSWr-e5y7Zg_BkTTnWfVGGHJHwbrehM7LmEFaMuXMeuVqlsqeckraWnsdXjJfXSc-tYw4omgZGdRlJ8LsI86xEyg4N4VXZUdueVRrrIkB/s1600/2013lateNovembertoearlyDecember+125.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy baby with a book!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmRT2ELjJI0UfoLoxqx3ov_RXB1f6eHr-ZaCceQU9fNChkoPp1euYl-mTteQQWHfozUhr_UJMd-rLinb0IsXKDrcmVIlxXMPdUjo24TliMFo6rcieFRHWr7L7QHPsNE-N72f2zXraylmOj/s1600/2013lateNovembertoearlyDecember+150.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmRT2ELjJI0UfoLoxqx3ov_RXB1f6eHr-ZaCceQU9fNChkoPp1euYl-mTteQQWHfozUhr_UJMd-rLinb0IsXKDrcmVIlxXMPdUjo24TliMFo6rcieFRHWr7L7QHPsNE-N72f2zXraylmOj/s1600/2013lateNovembertoearlyDecember+150.JPG" height="263" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Doing some reading.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCAS87ULChFQRm5gMPX_WXxrfD2XNgY54p-XC_tml8TAN-gG1h9vZDsASL4a60FRoU8Cp3whKwe63PKO_jLhBmiz7STS7QdIqyJCrnGp6QVjmq_HE5ZDUKeG2nRRJgEHT5Yv1huz9BP_to/s1600/2013Deceber+158.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCAS87ULChFQRm5gMPX_WXxrfD2XNgY54p-XC_tml8TAN-gG1h9vZDsASL4a60FRoU8Cp3whKwe63PKO_jLhBmiz7STS7QdIqyJCrnGp6QVjmq_HE5ZDUKeG2nRRJgEHT5Yv1huz9BP_to/s1600/2013Deceber+158.JPG" height="400" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hard to tell with a still shot, but she's dancing here.<br /><br /></td></tr>
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So, happy February 2nd, everybody! We have lots to be thankful for.</div>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com5tag:blogger.com,1999:blog-3033460936977120332.post-43972723014590145542013-10-08T21:07:00.000-04:002013-10-08T21:07:05.163-04:0016 months old!Bonnie turned 16 months old yesterday! Since my last update, she's been a busy girl. She started daycare in August (and we said goodbye to our fabulous nanny Julie), which has been great for her. She is now a proficient walker--and runner...and climber--so she was discharged from physical therapy a few weeks ago. She started speech therapy two-ish months ago, and has made some really good progress there. She is understanding a lot of what is said to her, and she's starting to say a few words as well. Her main communication right now is sign language, and she's so flippin cute when she signs. She doesn't know a ton of signs, but the ones she does know revolve around eating. That's right! Eating! My non-eater is eating! She's been in feeding therapy since she was about four months old, and it all finally started to click about three months ago. Right now she gets about 70% of her calories through her g tube, but we are working closely with her nutritionist and are actively weaning her from the tube. The other morning I went to get her out of bed, and the first thing she did was the sign for "eat." So so proud of my baby!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAD6wQddX7D6dpGivcSPEXzlZVVF1D1SjrQcpa7PoUmMZBB60N4VpsS4vBILHwazyaMzAyp5AQK_9UlBJ8FFJnemquTH6M-kqmfqk5NTpOc-divH6ekPY6ajmCM6DEeseYkKonfsk-P1-G/s1600/2013JuneFather'sDay+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAD6wQddX7D6dpGivcSPEXzlZVVF1D1SjrQcpa7PoUmMZBB60N4VpsS4vBILHwazyaMzAyp5AQK_9UlBJ8FFJnemquTH6M-kqmfqk5NTpOc-divH6ekPY6ajmCM6DEeseYkKonfsk-P1-G/s640/2013JuneFather'sDay+004.JPG" width="420" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie hearts you.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmYpDehPxbJ8vhRXvpWDG4oi0QnjBjujQmVXuaO80V8q42HbyzLxGAOl45Y28V_QiOdHuEMOeiWJXxal1nWKy1kVYpHIka3Q-p8J1BPmA8gv8x2S6XQKqXPfEeY_ymqlHTj2t9qGvMV30h/s1600/2013JuneZander&thecone+007.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmYpDehPxbJ8vhRXvpWDG4oi0QnjBjujQmVXuaO80V8q42HbyzLxGAOl45Y28V_QiOdHuEMOeiWJXxal1nWKy1kVYpHIka3Q-p8J1BPmA8gv8x2S6XQKqXPfEeY_ymqlHTj2t9qGvMV30h/s400/2013JuneZander&thecone+007.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Poor Zander had to wear a cone for awhile. He was further tormented by the baby.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdSNaUjBN5y3JMqalpA7i4qbd8xbVjF-4QFgDOID_WkxP9jZ6BnOIZKj7AQg1JCJ4hxRHdB9hS0g6PPgaPiGzUbp3dhDHQb092sQYBJKOuG0Uk4rB2SFJDELldoI8ReAIaTBqBvPrxuiOz/s1600/2013July+020.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdSNaUjBN5y3JMqalpA7i4qbd8xbVjF-4QFgDOID_WkxP9jZ6BnOIZKj7AQg1JCJ4hxRHdB9hS0g6PPgaPiGzUbp3dhDHQb092sQYBJKOuG0Uk4rB2SFJDELldoI8ReAIaTBqBvPrxuiOz/s400/2013July+020.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying a nice breeze. Or trying to fly.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeRH6ExLem4Y442I5Uuygkwn9_C5L0MtaZAl9fZc3lbMWgIo5fFWy7CAXvxvFIUyTJtLS0OMck2cBoDNcTFkaZk7WzmlE8WKSu4eYhDEYmUy2V81YX0-8RvavsmER2N6j8u3FOjXKErd2g/s1600/2013July+038.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeRH6ExLem4Y442I5Uuygkwn9_C5L0MtaZAl9fZc3lbMWgIo5fFWy7CAXvxvFIUyTJtLS0OMck2cBoDNcTFkaZk7WzmlE8WKSu4eYhDEYmUy2V81YX0-8RvavsmER2N6j8u3FOjXKErd2g/s400/2013July+038.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Unlocked the cage all by herself, climbed in, and had a chat with the dog.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKEtaDEup28nyDiFE6Tz0XL35yZXpmSCvXBxtdVgzT67Bk41XvM57hBSY67uswxtwJd4o3nJ89dtqIXAPlIdo73O1TDeY6M8ePo-XoYQdymA73C4iYAVq3CgbUFyHSgmKBiHS4gJwmFIJI/s1600/Jonathan's+phone+461.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKEtaDEup28nyDiFE6Tz0XL35yZXpmSCvXBxtdVgzT67Bk41XvM57hBSY67uswxtwJd4o3nJ89dtqIXAPlIdo73O1TDeY6M8ePo-XoYQdymA73C4iYAVq3CgbUFyHSgmKBiHS4gJwmFIJI/s640/Jonathan's+phone+461.JPG" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing in the water!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglJD1rx6xQL0lTLy7DhxnHFnHDdEEzpXzBcs2rCFosRgXnAY6jCNSTEO5r7NrvWcrGe0_y5vpsnnKsq2mj1_KkV8KVoEqoCl8vhmKlVYBFh4R1ANtuwC5n9oaxMOGwu40I3sk_P2M4Di0d/s1600/Jonathan's+phone+475.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglJD1rx6xQL0lTLy7DhxnHFnHDdEEzpXzBcs2rCFosRgXnAY6jCNSTEO5r7NrvWcrGe0_y5vpsnnKsq2mj1_KkV8KVoEqoCl8vhmKlVYBFh4R1ANtuwC5n9oaxMOGwu40I3sk_P2M4Di0d/s400/Jonathan's+phone+475.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This moment *right here* is when Bonnie caught on to the whole food thing. She's munching on bacon at Cracker Barrel.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjINZNjj_aHgtrsBTu4Uz85ov0yikVa4ej38tBoabjSQyk5RgYd2xwyno-wmCXVb-NipAfP_GALt4Ra69VizqR6i2XXAOHsBzdzDoZCDo4dAF8ndd8-9ftf3OcJWVAb_NdO44r3ere7YkDZ/s1600/Jonathan's+phone+477.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjINZNjj_aHgtrsBTu4Uz85ov0yikVa4ej38tBoabjSQyk5RgYd2xwyno-wmCXVb-NipAfP_GALt4Ra69VizqR6i2XXAOHsBzdzDoZCDo4dAF8ndd8-9ftf3OcJWVAb_NdO44r3ere7YkDZ/s400/Jonathan's+phone+477.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bacon day.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6cWM-SnsVhekyzo_N0cJN7cLPjA2EH97JcB75-CffSTvFpQQvISfHq6fa-m2VHWDUYpHuZsMzaxqWKWgxXIw2hm4AXP1hMuCiZxcIIKWf92OwB89aXh_7Dl7FkOHsOw9VLkfriJ6C4zup/s1600/2013June-Oct+008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj6cWM-SnsVhekyzo_N0cJN7cLPjA2EH97JcB75-CffSTvFpQQvISfHq6fa-m2VHWDUYpHuZsMzaxqWKWgxXIw2hm4AXP1hMuCiZxcIIKWf92OwB89aXh_7Dl7FkOHsOw9VLkfriJ6C4zup/s400/2013June-Oct+008.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweetness with Dado.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqpC28cG87qRHCIHhwHea1PJIkpXgn-GraxoqUq6XW_XXhyphenhyphenuTgyXgpO-BZpwWNIOrNRFnuAq1Kte22EQkSByZL-z2nU4u1Hfw-6PEOQdWp3mUoBm_6_A46wXXN9LMVDvOGEbFjAj9I24OO/s1600/2013June-Oct+012.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqpC28cG87qRHCIHhwHea1PJIkpXgn-GraxoqUq6XW_XXhyphenhyphenuTgyXgpO-BZpwWNIOrNRFnuAq1Kte22EQkSByZL-z2nU4u1Hfw-6PEOQdWp3mUoBm_6_A46wXXN9LMVDvOGEbFjAj9I24OO/s640/2013June-Oct+012.JPG" width="422" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eating crackers!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHtv0sL4JyCJJyrs3z2zCFLDowdpoU7VbZhy7OTnafMWoyMgSenGnBwvOtViMyOJ93Qc-tyv2VM3hOMhzvNW-fW82c-5RmyFsFXyOWIIW0ZRNVOe8E1NoxFL_S27PdYKkVb0OvrqwN8MeS/s1600/2013June-Oct+028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHtv0sL4JyCJJyrs3z2zCFLDowdpoU7VbZhy7OTnafMWoyMgSenGnBwvOtViMyOJ93Qc-tyv2VM3hOMhzvNW-fW82c-5RmyFsFXyOWIIW0ZRNVOe8E1NoxFL_S27PdYKkVb0OvrqwN8MeS/s400/2013June-Oct+028.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Eating Cheerios!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHqSuyZI10Ik3yVQMHEfhQQYjf6t70neB_QkqGYHIslIXA9qyVB1Bvdiwj7ECti3i2g8B4ONm-KRLcKVtDPZl5nxNC0os22Gk4NEQ8jcUgUiL38ZggVVNP90z-t-ccV19vsR_xc81jia8s/s1600/2013June-Oct+095.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHqSuyZI10Ik3yVQMHEfhQQYjf6t70neB_QkqGYHIslIXA9qyVB1Bvdiwj7ECti3i2g8B4ONm-KRLcKVtDPZl5nxNC0os22Gk4NEQ8jcUgUiL38ZggVVNP90z-t-ccV19vsR_xc81jia8s/s400/2013June-Oct+095.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She was having trouble getting around on her little trike, so big brother helped.</td></tr>
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And these are from today. She was helping me unload the dishwasher...and eating :)</div>
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com9tag:blogger.com,1999:blog-3033460936977120332.post-66349862958656737502013-06-06T19:04:00.000-04:002013-06-06T19:04:00.189-04:00To my baby...<i>To my baby, on the eve of her first birthday.</i><br />
<br />
Dear Bonnie,<br />
<br />
One year ago tonight, I rocked your brother to sleep (not easy, by the way, being nine months pregnant). My prayer as I rocked was that, in a year, you would be the one I would rock to sleep. And tonight you were. Oh, how grateful I am for that.<br />
<br />
The day you were born, the doctor described you as "feisty." That was the best thing anyone could have said, because it meant you were a fighter. What a fight you were in for, but you did it, baby girl. You won.<br />
<br />
I remember vividly the day I knew for sure you were going to come home. It was July 5, 2012, the day of your repair surgery. Your dad and I were sitting in the waiting room, waiting to see you after your surgery. One of the neonatologists came in and we had a ten minute conversation about what your scar would look like when you were older. It was the first time that one of your doctors had spoken with such certainty that there would *be* a future.<br />
<br />
I finally got to hold you when you were a month old, and what an amazing day that was. Your nurses will tell you that I made up for lost time and held you for hours on end every single day until you finally came home.<br />
<br />
Your big brother Henry is so very proud of you. When I take you with me to pick him up from school, he'll tell anyone who's around, "Hey! That's my sister!", usually followed by a kiss on your head or your foot or whatever's available. Dado and I are proud of you too. We love that mischievous laugh and twinkle in your eye when we catch you flinging tupperware from the cabinet or trying to put the dog's tail in your mouth. We very affectionately call you "the villain" because of the normal-baby-milestone-reaching havoc that you wreak. Now that you're learning to walk, well, bring on the destruction!<br />
<br />
My precious baby, you are such a gift. I pray that one day you will know the great God who brought you through those early months and who still holds you in His hand. I pray that you will one day know just how many people have been cheering you on from the very beginning. I pray that one day you can be proud of your scars--I know I am.<br />
<br />
Thank you for bringing so much joy to our family. Thank you for giving me a heart more sensitive to people's suffering. Thank you for staying with us. I thank God for every breath you take.<br />
<br />
All my love,<br />
Mama<br />
<br />
<br />
P.S. Here are some pictures from your last bath as an 11 month old :)<br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com7tag:blogger.com,1999:blog-3033460936977120332.post-323269858056017352013-04-24T22:05:00.001-04:002013-04-24T22:05:23.082-04:00Long time no see.<div class="separator" style="clear: both; text-align: left;">
Bonnie is ten (and a half!) months old now. How did that happen? She's been doing great lately, and making a lot of progress developmentally. About two weeks ago she figured out how to crawl, much to her delight. She had been one seriously ticked off baby for about a week and a half prior to that--wanting to move but not being able to. So she's officially mobile now. Yay Bonnie! A week ago she pulled to standing for the first time, which she's also pretty excited about. I'm so proud of her, because physical development-wise, she seems to be almost on target. I should also add that she's started physical therapy once a week since my last post, which I think has had a lot to do with her progress. You wouldn't really think that an hour once a week could do much, but it really does.</div>
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She's been babbling a lot in the past month or so. It's so great to hear that sweet little voice say "mama." I was kind of worried about her language development because it took her what seemed like a loooong time to get any consonants in her repertoire. Henry was an early talker, so that made Bonnie seem even more behind to me. I think now she's starting to catch up, which is a huge relief. </div>
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As far as eating, she's still getting pretty much all her calories via g tube. Her oral aversion (which was due to being intubated for so long) is pretty much resolved, so she doesn't mind having food in her mouth, and she (usually) doesn't gag anymore. Her problem seems to be that she just doesn't know what to do with her tongue to get food to the back of her mouth to swallow it. I'm sure her occupational therapist (who does feeding therapy) would have a more technical explanation. I do feel like she's making progress though, and I'm just waiting for the lightbulb to turn on. Any day now.</div>
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Speaking of the g tube, I just wanted to document a little of our experience with it. First, it's a thousand times better than the NG tube she came home with. Way more convenient and unobtrusive. One thing that freaks me out, though, is when she gets all tangled up in her tubing at night. There's really no way to avoid overnight feeds at this point, because she can't handle the volume she needs if it's compressed into just daytime feeds. (Did that make sense?) Anyway, her feeding pump runs overnight, and usually she's so zonked out that it's not an issue, but sometimes when I get her in the morning, she's all wrapped up in the tubing. It's scary. Another potential issue is what to do when she's hooked up to her pump during the day but wants to crawl (and eventually walk) all over the place. Am I supposed to just follow her around with with her little pump backpack? No idea. These are the things that keep me up at night. (Not really. I sleep great, thankyouverymuch.) But seriously, if any CDH mamas have some brilliant ideas for me, I'd love to hear them.</div>
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And now I've got four million pictures to share. These are roughly in chronological order, starting from a couple months ago. Enjoy :)</div>
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<tr><td class="tr-caption" style="text-align: center;">Curls! This was right after a bath, so her hair is extra curly.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Curls from the back.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My cute chubby baby at the zoo.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1_e5dKOBjC4ZJf1kUEjl1tZGopxgp1XCBs37b-C8OvWW1xGPs4WUsOkO2OcNbisOmMoxmJfK2aCccKCxSipkm1IRMokJ9ZybRYeFEtPyhowvlgOszHDB9idUaVcMstos-cjA0XYcMK3Dd/s1600/2013lateFebearlyMarch+073.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1_e5dKOBjC4ZJf1kUEjl1tZGopxgp1XCBs37b-C8OvWW1xGPs4WUsOkO2OcNbisOmMoxmJfK2aCccKCxSipkm1IRMokJ9ZybRYeFEtPyhowvlgOszHDB9idUaVcMstos-cjA0XYcMK3Dd/s400/2013lateFebearlyMarch+073.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet Henry riding a bear. Yeehaw.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Henry and Bonnie</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bonnie Bee. <ba-dum-ching></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCV4clbZlAbjUdlASr9p_dwZZqG3Eb6gUoA6CK_V3DfhxSMhr4ob-uUheSpXspcEAQrameJLf93hQZVlnl4t5cCI1Ipi44Idm2p-zHOvlw84SPLURbKgUcBeYQmxLkHf9LfWE9E1uwl9oU/s1600/2013lateFebearlyMarch+214.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCV4clbZlAbjUdlASr9p_dwZZqG3Eb6gUoA6CK_V3DfhxSMhr4ob-uUheSpXspcEAQrameJLf93hQZVlnl4t5cCI1Ipi44Idm2p-zHOvlw84SPLURbKgUcBeYQmxLkHf9LfWE9E1uwl9oU/s400/2013lateFebearlyMarch+214.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Henry giving Bonnie some love.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj70oDh3bs1CJGuRuqWO1Uvo-6pQkfNVvKMu16C90QzDUBCAbXj27u3pKyVv0EhYCjnmWkxtaa7ZBrmdpNcq-bjPKGywDETlDhl9xE1FRWpMToDhsPMwcHhRFwbTtHXPh9taMrUuKBlapCB/s1600/2013lateFebearlyMarch+218.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj70oDh3bs1CJGuRuqWO1Uvo-6pQkfNVvKMu16C90QzDUBCAbXj27u3pKyVv0EhYCjnmWkxtaa7ZBrmdpNcq-bjPKGywDETlDhl9xE1FRWpMToDhsPMwcHhRFwbTtHXPh9taMrUuKBlapCB/s400/2013lateFebearlyMarch+218.JPG" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie not feeling it.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bonnie and Jonathan. This one just makes me smile :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Can't have dinner without wearing your hand-knit monkey hat.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Just because he's beautiful.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Henry reading to Bonnie. Love this.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Happy girl!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bonnie looooves her puppy Zander. More photographic evidence to follow.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Bonnie with a bow!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPALVU96gJr0O9skVLHmmWjX0Yk0qV4wyNKbRffmPuLxbZwrHaLnVvEB30pssV4xfyTdPLZOeffiWBd-8AkYYWq2ZHYEZ0FdmvMBc0pz3bxkcKuQUi60oK_xFfg7drpSBXtvbF4SBAoH6s/s1600/2013March+046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPALVU96gJr0O9skVLHmmWjX0Yk0qV4wyNKbRffmPuLxbZwrHaLnVvEB30pssV4xfyTdPLZOeffiWBd-8AkYYWq2ZHYEZ0FdmvMBc0pz3bxkcKuQUi60oK_xFfg7drpSBXtvbF4SBAoH6s/s400/2013March+046.JPG" width="400" /></a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCl-MaA-U75SE_-R6AXU8-5cF7GYbVeKpaeE0IJrlaEqJiVBDe98jkwYOn9znyz_2ndfWVJyQN2N1f-mXQQsISXR4LoSPuQKEjNq6YZapkZ25Ior8Hoezt6kEKcDUmX1IWAFfvNTB3LPxz/s1600/2013--Easter&April+002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCl-MaA-U75SE_-R6AXU8-5cF7GYbVeKpaeE0IJrlaEqJiVBDe98jkwYOn9znyz_2ndfWVJyQN2N1f-mXQQsISXR4LoSPuQKEjNq6YZapkZ25Ior8Hoezt6kEKcDUmX1IWAFfvNTB3LPxz/s400/2013--Easter&April+002.JPG" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie and Grandmama in Tennessee</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3StrZESxDOatfFThVWEmYwFg1W7MVutCnP7-sOgkvQVyJkqDXcKxDewEh-N9u41j0uC3vj6rD-S7CUMMiq6qmTAI-lqjgaXujTH_Vtb62NyWsDiZr88Ok4XQAvOrlo9VU9PQssuV0FWaG/s1600/2013--Easter&April+029.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3StrZESxDOatfFThVWEmYwFg1W7MVutCnP7-sOgkvQVyJkqDXcKxDewEh-N9u41j0uC3vj6rD-S7CUMMiq6qmTAI-lqjgaXujTH_Vtb62NyWsDiZr88Ok4XQAvOrlo9VU9PQssuV0FWaG/s400/2013--Easter&April+029.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Hallelujah!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi04X3RFmpmSJlZr43hyFK2nWsYb-pL4wDzVempeIpxV4lL89qGj3fech7Plbw8Fjp1xueoBtbSvrh7ojmbpW-j1Ntdc6uTv6cXdrNwQR7RILMxqy0IshTckSxXsjG5sef0X99WGsYH8Cdp/s1600/2013--Easter&April+042.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi04X3RFmpmSJlZr43hyFK2nWsYb-pL4wDzVempeIpxV4lL89qGj3fech7Plbw8Fjp1xueoBtbSvrh7ojmbpW-j1Ntdc6uTv6cXdrNwQR7RILMxqy0IshTckSxXsjG5sef0X99WGsYH8Cdp/s400/2013--Easter&April+042.JPG" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yet more hallelujah's.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjWGbFQNygFMPvNw-Bk7fcoDp80kZUTy84uJSXDb8g-bcxP2VBQSrNbk6d_jA_qXEG7_DvLBJ8rjw0JvEr_sFOynBdbRYuQvG-CbjIqXFRkMxxAosft8vk91oEB-dNOLj9BFXg8iFMG2tS/s1600/2013--Easter&April+062.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjWGbFQNygFMPvNw-Bk7fcoDp80kZUTy84uJSXDb8g-bcxP2VBQSrNbk6d_jA_qXEG7_DvLBJ8rjw0JvEr_sFOynBdbRYuQvG-CbjIqXFRkMxxAosft8vk91oEB-dNOLj9BFXg8iFMG2tS/s400/2013--Easter&April+062.JPG" width="263" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3wKipkcurUrZCRTzljIyM6PafyQDMHCCTdm1Mk9HZorPDdrfOx1UCH0XG84wy4gxoik7jr46hnGaPGdMKprP-UosflTRuYyqJm2l7Totn6IRrABFTcEYNMrdtK5nzpMcoqxXKrdKMvRxd/s1600/2013--Easter&April+100.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3wKipkcurUrZCRTzljIyM6PafyQDMHCCTdm1Mk9HZorPDdrfOx1UCH0XG84wy4gxoik7jr46hnGaPGdMKprP-UosflTRuYyqJm2l7Totn6IRrABFTcEYNMrdtK5nzpMcoqxXKrdKMvRxd/s400/2013--Easter&April+100.JPG" width="263" /></a></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZW-oL6IANbg4ao4Fte-ETQxWEhZ62RExFQB-Hj1eTtO1IQL0nD5mMD-2i6RwVW02wUByOh5ztEXazNP9JH5tcOlBRM_WXSdUfwNp5uCidSXLroPC9y66UrkxcfUd-gXER5sGl7Z38LuM/s1600/2013--Easter&April+126.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqZW-oL6IANbg4ao4Fte-ETQxWEhZ62RExFQB-Hj1eTtO1IQL0nD5mMD-2i6RwVW02wUByOh5ztEXazNP9JH5tcOlBRM_WXSdUfwNp5uCidSXLroPC9y66UrkxcfUd-gXER5sGl7Z38LuM/s400/2013--Easter&April+126.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out in the exersaucer while Dado cleans out the garage.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkYGThsRMpY4Fu5ij-rys1aHn6Rih05v4w-tdJtp6isozKN5RHnsaOTY09N-0D7_OGKmbU-NOsWCzyfQv5IhUXvVWmU5N-RHIimQFUDrBYGgmaFt99X5DtByhirdvBZ-sKxzKbrPHP9Qfx/s1600/2013--Easter&April+145.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkYGThsRMpY4Fu5ij-rys1aHn6Rih05v4w-tdJtp6isozKN5RHnsaOTY09N-0D7_OGKmbU-NOsWCzyfQv5IhUXvVWmU5N-RHIimQFUDrBYGgmaFt99X5DtByhirdvBZ-sKxzKbrPHP9Qfx/s400/2013--Easter&April+145.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two kids in a tiny chair.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicGV_7nbC5x1gpqLvHCljRuSgpJpUwUCY9cuTZiu5RuIG8fG7nTwyvtk76mymRJkPzIpbvm3QJRPBouvxLsYI8PhWQyChyQrBX31erI0jbn-kj8So4oS7UVGJSsP1JZ6zDC4T7cwWA8BUT/s1600/2013--Easter&April+149.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicGV_7nbC5x1gpqLvHCljRuSgpJpUwUCY9cuTZiu5RuIG8fG7nTwyvtk76mymRJkPzIpbvm3QJRPBouvxLsYI8PhWQyChyQrBX31erI0jbn-kj8So4oS7UVGJSsP1JZ6zDC4T7cwWA8BUT/s400/2013--Easter&April+149.JPG" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">See? Loves the dog.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmLhBvBBqU_hf7Rq4NXOMRA4ss6yLshaE5a2nt5n37ResOyAV0g3a05PrJIpBGyHgWHMPbeXjvRDC1kaGVED6q76XSZa3RlzDfwwF3G2JbxkubPz9l6j_1MJ8iRiCKDKxYJ2zel9z5BiXA/s1600/2013--Easter&April+151.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmLhBvBBqU_hf7Rq4NXOMRA4ss6yLshaE5a2nt5n37ResOyAV0g3a05PrJIpBGyHgWHMPbeXjvRDC1kaGVED6q76XSZa3RlzDfwwF3G2JbxkubPz9l6j_1MJ8iRiCKDKxYJ2zel9z5BiXA/s400/2013--Easter&April+151.JPG" width="263" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Poke poke. (Don't worry folks, he's the world's sweetest dog.)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOOLHvuwNkDWpt_fruryw2y9IyyDY2WnutDfBwvVA5cjLs0CK5Wy6ao8w3xpeh7LMLjMr7tkLCaPZrRCykuLjBFbHoEYb3ZxphMr_vcPS1WsfauTmnKD1zl_PaQIByRL4SihqziikQ11pH/s1600/2013--Easter&April+155.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOOLHvuwNkDWpt_fruryw2y9IyyDY2WnutDfBwvVA5cjLs0CK5Wy6ao8w3xpeh7LMLjMr7tkLCaPZrRCykuLjBFbHoEYb3ZxphMr_vcPS1WsfauTmnKD1zl_PaQIByRL4SihqziikQ11pH/s400/2013--Easter&April+155.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Check it out!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglKwKJyCZw-1quP_fbgyLNhbHE0H0ScT6nrmQZfOoXSecISGomtsKQ5t7MUDLToiGtGXnKfqtdj9ZzGzTeWGbpTMhETp1ugo17c1g33PiY1x46KMN7tGPEpvxIbiPC8DHRngftYUT2Awo0/s1600/2013--Easter&April+162.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglKwKJyCZw-1quP_fbgyLNhbHE0H0ScT6nrmQZfOoXSecISGomtsKQ5t7MUDLToiGtGXnKfqtdj9ZzGzTeWGbpTMhETp1ugo17c1g33PiY1x46KMN7tGPEpvxIbiPC8DHRngftYUT2Awo0/s400/2013--Easter&April+162.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More Zander love.</td></tr>
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<br />Every single day I look at this girl and marvel at how far she's come, and how blessed we are to even have her with us. Love you, sweet girl.<br /><br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com4tag:blogger.com,1999:blog-3033460936977120332.post-71383163540233516352013-02-02T09:45:00.003-05:002013-02-02T09:45:47.164-05:00A Year Ago Today<br />
A year ago today, when I was 21 weeks pregnant, Jonathan and I got the news that our baby girl would be born with a diaphragmatic hernia.<br />
<br />
It was a Thursday. The anatomy scan was scheduled for the afternoon. Earlier in the day, an article on the bulletin board at work caught my eye. It was an interview with one of the pediatric cardiologists and it was about hypoplastic left heart syndrome (HLHS). I don't know much about this condition, other than it is one of the most severe congenital heart defects there are. Basically these babies are born with only half a heart and have to undergo several repair surgeries to correct it. The point of this article I was reading is that 25 years ago, HLHS was always fatal. It's still an incredibly serious heart defect, but at least there's a treatment.<br />
<br />
Reading that article prior to my anatomy scan, I remember thinking, "Wow, wouldn't that be terrible? So glad my baby doesn't have *that*." The irony just about kills me. I was soooo sure that nothing could possibly be wrong with my baby.<br />
<br />
I had lunch with my friend, coworker, and "roommate" (we share an office) Sarah that day. It was her son's 5th birthday, so we talked about how fast he was growing up and what kind of birthday celebration he would have. I told her about the article I'd read on HLHS and how glad I was that my baby didn't have it. Looking back, what was I thinking? She *might* have. She easily could have.<br />
<br />
After lunch I met up with Jonathan at the OB office. That appointment is documented <a href="http://babybeehelms.blogspot.com/2012/02/not-blogging-type-but-here-we-are.html">here</a>, which is the first post of this blog. It's when our as-yet-unnamed little girl was diagnosed with a congenital diaphragmatic hernia. The OB doc, who was very nice but clearly knew very little about CDH, set up our appointment with maternal fetal medicine for the next day and told me not to "lose sleep" over this. I vaguely remembered hearing about CDH in nursing school, but had no idea how serious it could be.<br />
<br />
I'm a member of <a href="http://www.ravelry.com/">Ravelry</a>, which is an online knitting/crocheting community that has lots of groups and forums on various topics...including a "Due in June 2012" group. This is what I posted there on February 2, 2012 following that fateful OB visit:<br />
<br />
<span style="background-color: white; font-family: Verdana, 'Lucida Sans Unicode', 'Lucida Grande', Arial, Helvetica, sans-serif; font-size: 12px;">Sooo, we’ll know more tomorrow after seeing The Specialist, but at the moment it looks like baby girl has a diaphragmatic hernia. Instead of her stomach being below the diaphragm, it’s above. Wouldn’t be a problem except that it can cause crowding of the lungs (and heart too, but apparently it’s the lungs we’re more worried about) and cause them to not develop properly. The good news is that we’re finding this out now and not after delivery. The bad news is, little bit is likely going to have surgery soon after birth to fix this. And may end up being a preemie, if more bowel gets up in the thoracic cavity and causes the lungs to get too smushed…might have to deliver early so she can have surgery sooner.</span><br />
<span style="background-color: white; font-family: Verdana, 'Lucida Sans Unicode', 'Lucida Grande', Arial, Helvetica, sans-serif; font-size: 12px;">We’re seeing maternal fetal medicine tomorrow at 8:00, which involves some kind of high tech ultrasound, plus we’ll be talking to a genetic counselor. </span><br />
<span style="background-color: white; font-family: Verdana, 'Lucida Sans Unicode', 'Lucida Grande', Arial, Helvetica, sans-serif; font-size: 12px;">So, if you’re the praying type, or even if you’re not, please keep our little family in your thoughts/prayers over the next few weeks. Thanks :)</span><br />
<br />
I have to laugh a little at my innocence (ignorance) here. My main concern at the time was apparently that she'd have to have a repair surgery. I hadn't yet even Googled "congenital diaphragmatic hernia." No concept of the months-long hospital stays, the extended time on the ventilator, the ECMO complications, the narcotic weaning, the feeding issues. Y'all. Ignorance is bliss. Not that I was blissful, but if I had found out all that CDH entails on that first day, I think my head would've exploded. God was protecting me.<br />
<br />
There is so much I could say about God's grace and peace and provision over the last year, but a picture's worth a thousand words.<br />
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkne-OIFdK9vZY9zNkljxtZadbu8iFisbxboezC8_FhLNBqhyQI4OF46rNM5gyvY3f7oYpRqEgiOpyvNX1WGN1tXQB-BD_Wo07CcmVpooKqcKGa4Y5S-ahyphenhyphen4gfiBGAyS7V8pM712ivVpk0/s1600/bonniehat.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkne-OIFdK9vZY9zNkljxtZadbu8iFisbxboezC8_FhLNBqhyQI4OF46rNM5gyvY3f7oYpRqEgiOpyvNX1WGN1tXQB-BD_Wo07CcmVpooKqcKGa4Y5S-ahyphenhyphen4gfiBGAyS7V8pM712ivVpk0/s640/bonniehat.jpg" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px;">Through many dangers, toils, and snares<br />
I have already come<br />
'Tis Grace that brought me safe thus far<br />
And Grace will lead me home</td></tr>
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Amen. Thank you all for your faithful prayers and positive thoughts for our sweet Bonnie.<br />
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com10tag:blogger.com,1999:blog-3033460936977120332.post-5761570342949606292013-01-04T22:11:00.000-05:002013-01-04T22:11:44.010-05:00How's that baby doing?You know how when you're supposed to call someone back, and for whatever reason you don't do it right away, you keep putting it off because now it's been too long and it'll be awkward...and so you wait even longer, and it keeps getting more and more awkward? Or maybe that's just me. I'm not a big phone person. Anyway, that's my attempt at a little analogy on why it's been so long since I've blogged. The longer I go without blogging, the more I'll have to write about and the longer it'll take. And heck, I've got two kids (at home) now. I don't have time! So I put it off for when I do have time...and by then there's even more to write about. You get the point.<br />
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So I might as well just jump on in with a little bulleted list, which I will attempt to keep in some semblance of chronological order.<br />
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<li>After her G tube surgery and Nissen fundoplication, Bonnie's life changed in a big way for the better. The 8 to 12 times a day of projectile vomiting was over. (Until you've experienced that with your own baby, it's hard to understand how terrible it is.) She still gags some and can throw up a little bit despite the Nissen, but it's a thousand times better than it was. Yay for Dr. Surgeon!</li>
<li>She started occupational therapy in October to work on feeding and slowing down her breathing (chick breathes about 80 times/minute when she's just hanging out). Occupational therapists are a pretty neat bunch of folks. Some of their techniques seem a little like voodoo to me, but hey, we're getting results. Actually, she's still not eating, but after an OT session that involved what appeared to be the therapist just putting her hand on Bonnie's belly in various places for a minute or so at a time, the next day she started vocalizing waaaay more than she ever had before. So I'm a believer. Bring on the OT voodoo.</li>
<li>Halloween! This was more or less a non-event for Bonnie, but we pushed her around in the stroller while Henry went to about four houses in his super cute dragon costume.</li>
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<li>I went back to work the beginning of November. It was a glorious day. Even though Bonnie had been home for two months by that point, going back to work was the beginning of normalcy for me. </li>
<li>We've got a nanny who comes to the house to take care of Bonnie. She has many years of childcare experience, and she does a great job. I have absolutely no worries when I leave Bonnie with her. (Found her on www.care.com, for all you inquiring minds.) Henry still goes to daycare because he loves it, and because Bonnie's pretty much quarantined until April, so it didn't seem fair to keep Henry homebound for that whole time too. </li>
<li>Bonnie had her portrait done. A beautiful CDH survivor named Laycee, who had a stroke while on ECMO, draws these pictures of folks in her own unique style. We got one done of Bonnie, and I loooove it. So does she.</li>
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<li>Thanksgiving! We gave thanks for our miracle baby. Didn't travel this year because I had no time off, but Jonathan made an amazing Thanksgiving dinner for us. </li>
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<li style="text-align: left;">Please notice the progression of chubbiness here. Once she quit throwing up half her food, she started gaining some serious weight. Her cheeks absolutely own me. So much face to love and kiss and squish. (Funny little side note. See those little spit bubbles in her mouth? Whenever Bonnie does this, Henry says, "She's bubblin' up!!!" No idea where he got that, but it's cute as heck.)</li>
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<li>Random illness. Bonnie ended up with a UTI (urinary tract infection) following a few days of fever, diarrhea, and generally not feeling well. When babies get UTI's, they usually end up with further testing to make sure there's no kidney reflux (not the actual medical term, but it basically means urine flowing in the wrong direction, which can introduce bacteria from the outside into the bladder/kidneys...which isn't good). Bonnie had said testing and they found grade 1 reflux (the mildest) on the left. I'm pretty sure in most cases they wouldn't bother to treat such mild reflux, but because she has a history of renal failure, the nephrologist (kidney doc) thought it'd be a good idea to treat, just in case. The treatment is prophylactic antibiotics to keep her from getting another UTI. That means a low dose antibiotic every single day. They'll check again for reflux in about a year, so hopefully she'll have outgrown it by then and can come off the antibiotic.</li>
<li>Brother and sister. Henry loves the heck out of Bonnie. He always wants to touch her and talk to her, and if she's crying, he'll say, "It's okay Bonnie. We love you." She is in love with him as well. She lights up when he comes close and reaches for his face.</li>
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<li>Christmas! We went to East Tennessee to celebrate with my family. Henry was super excited about Santa, who brought him a grill (like those little play kitchens, but more manly, or something). Bonnie had no idea what was going on, but smiled at everybody :) One of the highlights of this trip for me was seeing Bonnie with her cousin Molly, who is a couple months older than her. Such cuteness with the baby girls.</li>
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And here are a few more pictures from Christmas.</div>
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<span style="text-align: left;">On one of Bonnie's darker ECMO days, I remember praying over these sweet little feet. Funny how your mind works in moments like that, but what I wanted was for her to grow up to see how those little feet would turn out--like mine (cute...of course) or Jonathan's (cute on a boy, somewhat unfortunate for a girl). So far it looks like she's in luck :)</span></div>
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<li>Assorted cuteness.</li>
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<li>General growth and development. A couple weeks ago, Bonnie learned to sit up by herself. Big round of applause for that, please. She was 6 1/2 months old. Henry didn't sit by himself until 7 months. Take that, 91 day NICU stay. She's very social and laid back, sleeps great, and doesn't mind long car trips. Still not eating by mouth, and no babbling yet...but hey, that's what early intervention (i.e. therapies and such) is for.</li>
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So there you have it. You might be wondering what inspired this blog post tonight, and the answer is that two really nice Bonnie-related things happened to me today*. That got me thinking about all the niceness that was lavished on us while I was pregnant with Bonnie and through her NICU stay and beyond. So this mega-post is sort of a thank you for following Bonnie's journey and for blessing us with your prayers and encouragement. </div>
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*The aforementioned Nice Things were these. First--this morning I got a phone call from a local photographer informing me that our family had been nominated by "someone who wants to remain anonymous" for a free 30 minute photo session. So so nice. Second--I had a customer service experience that probably warrants a raise for the person involved. Big thank you to Jason from Equipped for Life. He will never ever read this blog, but I'm thanking him anyway. :)</div>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com4tag:blogger.com,1999:blog-3033460936977120332.post-4382135796454566052012-10-09T23:45:00.000-04:002012-10-09T23:45:59.040-04:00Surgery Day!<div class="separator" style="clear: both; text-align: left;">
Short version: Bonnie's surgery went well, and she is now the proud owner of a G tube. She is also sporting a Nissen fundoplication (not sure if this is something one can "sport", but whatever). </div>
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Long version: At 3:00 a.m. today, I noted with glee that this would be Bonnie's last feeding via NG tube. At 7:00 a.m., she got some Pedialyte through her NG, but since it wasn't formula, I'm sticking with my glee from 3 a.m.</div>
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We got to the hospital at 10:00 a.m. for surgery scheduled at noon. They gave Bonnie a baby-sized yellow hospital gown to wear. It was really cute, but it came off about five minutes later because the pre-op area was about 86 degrees, and chick gets hot really easily.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhme50hi9DgdAPAA6WlbxyNB14lo1Bkk_9J7GryP6mvUhmtKglLgZZIEAHCddDS0EhE9nkbmCOA8wPnP7Mh7uaD0zq6K8cLbowgRd21QV-2dYDDCTeMJqftF8oVuqpQMBmF_k2i6oGTgwkb/s1600/241522_10152148946390567_1094502288_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhme50hi9DgdAPAA6WlbxyNB14lo1Bkk_9J7GryP6mvUhmtKglLgZZIEAHCddDS0EhE9nkbmCOA8wPnP7Mh7uaD0zq6K8cLbowgRd21QV-2dYDDCTeMJqftF8oVuqpQMBmF_k2i6oGTgwkb/s400/241522_10152148946390567_1094502288_o.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie and the yellow gown. And maybe a gang sign. We'll have to have a chat about that. </td></tr>
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Dr. Surgeon came to talk to us about his plans. He said he'd been doing a lot of thinking today about what would be best for Bonnie. Asked if her reflux seemed to still be bothering her (yes) and if she was still throwing up (yes--averaging 7-8 times/day lately, which is actually an improvement). He said it's a little difficult to justify doing a Nissen (the anti-reflux procedure) when the baby is gaining weight, but that he believed it would make Bonnie feel a lot better and improve her quality of life. The plan was to for sure do the G tube, and try to do it laparoscopically. He would try to do the Nissen laparoscopically as well. If he had to open her up to do the G tube, he'd go ahead and do the Nissen that way, but he wasn't going to open her up *just* to do the Nissen (though he offered to). Got all that?</div>
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Right at noon, Mr. Anesthesia Guy came and toted Bonnie off. He was a nice guy, and she seemed happy to go with him, so this part actually wasn't as traumatic as it could have been.</div>
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The first update was about an hour into the procedure. All is going well.</div>
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Another hour later. All is going well, still working on the Nissen. We are "awhile" from being done.</div>
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Two hours after that. The Nissen is done! Now working on the G tube.</div>
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Half an hour later. Dr. Surgeon comes out. He looks exhausted. Like perhaps my four month old daughter beat him up. (He actually has what I believe to be a good healthy fear of Bonnie, from back in her NICU days when you better not mess with her too much or she'll pull some crazy stunt. Prior to surgery today he said something about "treating her with respect." Thaaaat's right.) Anyway, I give him a lot of credit because he was not going to let her screwy anatomy defeat him. The phrase, "it took me an hour to find her stomach" was uttered. This wasn't a straightforward procedure. Bonnie didn't make it easy on him (wouldn't have expected any less), but I'm grateful for a skilled surgeon who knew what to do with her.</div>
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After some serious miscommunication--which I would continue to be upset about it if would accomplish anything--we were finally (*finally*) reunited with Bonnie in the PICU (pediatric ICU). She was asleep-ish, but squirmy and grimace-y and not very comfortable. That's what happens when your guts are shuffled around for five hours, I guess. She got a dose of morphine to help with the pain, which seemed to help quite a bit. Despite all the tubes and wires, she looked beautiful. See below for photographic evidence :) We left a couple hours later, since we can't spend the night in the PICU.</div>
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Assuming no drama tonight, she'll move to a regular room tomorrow. There's a possibility of going home on Thursday (in two days), but we shall see.</div>
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Thanks everybody for your prayers. This surgery was at least as nerve-wracking as her hernia repair, maybe more so--probably because it took three times as long. We are so grateful to God for giving us this precious baby and for continuing to hold her in His hand. We love you, Bonnie.</div>
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And now, picture time! These first few are from the night before surgery.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLWZdvPYSKGz5bCnDWLV2ey4a-hNDhktiM4desCK3KpwWNEvOVQHxkDGPj42uu8h5xNNB0CvP0fk3i8ur_k1gQADFTcqjzaNFBqAK_4ic0tfDUNDsKcK-6dOSg6nP8TLBxFAhHtPNqmSQ5/s1600/DSC_4559.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLWZdvPYSKGz5bCnDWLV2ey4a-hNDhktiM4desCK3KpwWNEvOVQHxkDGPj42uu8h5xNNB0CvP0fk3i8ur_k1gQADFTcqjzaNFBqAK_4ic0tfDUNDsKcK-6dOSg6nP8TLBxFAhHtPNqmSQ5/s400/DSC_4559.JPG" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTWW3BBpViMiUu4CvZLx4teDFW-MqQbHlbEuCQHNnYvWAG84suyn2Y2qDMrWmswQfutcB3sWVz8ZIaDOKxUWeIHET88xil_ErlZEPOrranGE_ikj0Hde3qKGmfwocjivR9ZUfAfyu5QTuc/s1600/DSC_4590.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTWW3BBpViMiUu4CvZLx4teDFW-MqQbHlbEuCQHNnYvWAG84suyn2Y2qDMrWmswQfutcB3sWVz8ZIaDOKxUWeIHET88xil_ErlZEPOrranGE_ikj0Hde3qKGmfwocjivR9ZUfAfyu5QTuc/s400/DSC_4590.JPG" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF7zFb8JtEgqGPhRiuWzMvR_XNB-DfaEk6do1Exg7piLvQjt0i7GnexJBJgJa_eWbyUsABZbZlQkKIyuqkhxd1dll8qQE-dkAA34wS44S4kvpxf16hXeqhu25xYNfxRkZj9JnCxbgZQ8JS/s1600/DSC_4605.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF7zFb8JtEgqGPhRiuWzMvR_XNB-DfaEk6do1Exg7piLvQjt0i7GnexJBJgJa_eWbyUsABZbZlQkKIyuqkhxd1dll8qQE-dkAA34wS44S4kvpxf16hXeqhu25xYNfxRkZj9JnCxbgZQ8JS/s400/DSC_4605.JPG" width="400" /></a></div>
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Here's one from this morning after her bath. I was so excited to get that NG tube off her face!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaHo9w568t1KG3prjzhMiAq6FvEIw3SXi5cxRieryYLluIN0GiAlydgzbUy3Cvn9juJH_Gd1uju1taaEmaprD3XUMVVLPkQXioUiOuMUdGEiHkUCFcgsD2fkx_IoQNexKfi03r_Vkgf_VX/s1600/DSC_4608.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaHo9w568t1KG3prjzhMiAq6FvEIw3SXi5cxRieryYLluIN0GiAlydgzbUy3Cvn9juJH_Gd1uju1taaEmaprD3XUMVVLPkQXioUiOuMUdGEiHkUCFcgsD2fkx_IoQNexKfi03r_Vkgf_VX/s400/DSC_4608.JPG" width="400" /></a></div>
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And now, pictures from PICU (after surgery).<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmQ_wLDZlVM7hJoLz2PVt42YxWLW857kBbaxscMFyunsotXR1nDYe_HizuxIJlrplPQ0e5Pa0dKRpLvlBVDRfAo8yb2hnS3wFERMn4b5KhhAYmkc6mX-8U9izOEvfypfcETqWtP-451KxV/s1600/DSC_4614.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmQ_wLDZlVM7hJoLz2PVt42YxWLW857kBbaxscMFyunsotXR1nDYe_HizuxIJlrplPQ0e5Pa0dKRpLvlBVDRfAo8yb2hnS3wFERMn4b5KhhAYmkc6mX-8U9izOEvfypfcETqWtP-451KxV/s400/DSC_4614.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pretty girl.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtojNNmcoBsmthJHNtxhxSfDX_1nD59FNGw4dMJqoh3ThG8tJvTXlaWjFRzUezMGejz1-2LzI8_9YQQCg_RvEi7baBKspk7_ibwU7JVU_RD3vuaovtTA0X_C4mnSu50MWYDJlMPl0fKoWZ/s1600/DSC_4622.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtojNNmcoBsmthJHNtxhxSfDX_1nD59FNGw4dMJqoh3ThG8tJvTXlaWjFRzUezMGejz1-2LzI8_9YQQCg_RvEi7baBKspk7_ibwU7JVU_RD3vuaovtTA0X_C4mnSu50MWYDJlMPl0fKoWZ/s400/DSC_4622.jpg" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggling with her blanket</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com6tag:blogger.com,1999:blog-3033460936977120332.post-79610448754453657242012-10-07T22:20:00.002-04:002012-10-07T22:20:42.868-04:00Heading back to Charleston!<div class="separator" style="clear: both; text-align: left;">
Just a quick update to let y'all know we're heading back to Charleston tomorrow for Bonnie's G tube surgery. This will replace (what I've come to know as) that super annoying NG tube. We had really high hopes that she would miraculously learn to eat by mouth once we left the NICU, but alas, that has not happened. I'm convinced that at least part of the problem is that her formula tastes like poison. She's on Neocate, which is what's known as an "elemental" formula because it's super super broken down. Really. If you read the ingredients, it goes like this: some form of carbohydrate, some form of fat, (then the biochemistry lesson begins) arginine, alanine, isoleucine, valine, etc etc etc. Yeah. Individual amino acids. How could that possibly taste good? Turns out it doesn't. (And if you remember <a href="http://babybeehelms.blogspot.com/2012/07/mmm-tasty-baby.html">this post</a> about how I licked my child to find out if she was salty, it shouldn't surprise you that I tasted it.) I feel sorry for Bonnie that that's her option of something to eat. Poor gal. So yeah, in addition to her gagging and weak suck, she is absolutely not a fan of Neocate. All that to say, the G tube has become a necessity. Much safer, more stable, less obvious. The downside is that it requires surgery, which is what's happening on Tuesday. </div>
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We would love it if you would pray with us for a safe and successful surgery. Now that Bonnie's been home for a month, the thought of her going back to the hospital and having all the hospital "stuff" going on again (IV, pain meds, monitors) doesn't excite me. </div>
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Here are a couple recent pictures :)</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3MT9I7DEFrIw1fLJP8LfyqKU9dkKzlCzqKpI15NoruJK6jgwYtPBI8ffMRpmcLQ7h4T8wkv1sguDJjGe7b4cK9eLhnWZwUTKVYPo0jEeR1r9w15kUFg66s35i2LDasaYNCsQB091gg_lP/s1600/October2012+009.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3MT9I7DEFrIw1fLJP8LfyqKU9dkKzlCzqKpI15NoruJK6jgwYtPBI8ffMRpmcLQ7h4T8wkv1sguDJjGe7b4cK9eLhnWZwUTKVYPo0jEeR1r9w15kUFg66s35i2LDasaYNCsQB091gg_lP/s640/October2012+009.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet little nugget.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVgHKjcM-ouJfQjFPNSmYkbglJJMWQUwAE722dX8BqadiAoGbhsjwp0UzSuJNsHv_eXEwvT_tuf6e95Uf4hkyW7TOrZUEu6zXuYaXs2X8QAi5gb3jv1GpyQcYv8BiAEjX-qZPvXzeEwhUE/s1600/October2012+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVgHKjcM-ouJfQjFPNSmYkbglJJMWQUwAE722dX8BqadiAoGbhsjwp0UzSuJNsHv_eXEwvT_tuf6e95Uf4hkyW7TOrZUEu6zXuYaXs2X8QAi5gb3jv1GpyQcYv8BiAEjX-qZPvXzeEwhUE/s640/October2012+004.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Heading to school on a rainy day.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf-Dhk_b6-DJmte_CSWPQPph00osYS41d6wZMknIZYKAiTYH8cYQ4-_-K_D7qaU77knr5nVtCMLXi7qVVKoVOEGfOU-90Ejrdi3UafqvE9WSPGJOm6V8pifURT0FIYj_SPss_3czJhBdVd/s1600/October2012+014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf-Dhk_b6-DJmte_CSWPQPph00osYS41d6wZMknIZYKAiTYH8cYQ4-_-K_D7qaU77knr5nVtCMLXi7qVVKoVOEGfOU-90Ejrdi3UafqvE9WSPGJOm6V8pifURT0FIYj_SPss_3czJhBdVd/s400/October2012+014.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Henry giving Bonnie a kiss. They love each other.</td></tr>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com2tag:blogger.com,1999:blog-3033460936977120332.post-22461994433759694392012-09-20T21:56:00.000-04:002012-09-20T21:56:44.985-04:00Update from the home front.Many apologies for not updating sooner to let you all know that we did indeed make it home (two weeks ago!?). It is seriously crazy with two kids at home. I don't know how people do it. Anyway. Bonnie got discharged from the hospital two weeks ago today (still with the <a href="http://babybeehelms.blogspot.com/2012/07/redeeming-thursday.html">Thursday theme</a>), just one day shy of her 3 month birthday. I'd love to tell you that it was a great and magical day, and it was, but it was also really stressful and overwhelming--we had been living away from home for 3 months, so in addition to bringing a new baby home, we were essentially moving across the state. It was a wild day.<br />
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So. Since we've been home, we've been getting to know Bonnie and her schedule. Turns out she's a really good sleeper. I have to get up 4-6 times a night (to turn her feeding pump on and then off an hour later, every three hours), but she sleeps pretty well through the night.<br />
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Except when her belly hurts. Which seems to be quite a bit. On her third day home I started keeping a log of her spitting up/vomiting and how it related to her feeding times, calorie content of her formula, etc. (I never claimed I wasn't a nerd.) After a couple days of feeling like we were torturing her every time we started one of her feedings (via NG tube), Jonathan and I pretty well lost our minds and called the surgeon to ask for an earlier appointment. The original plan had been to work on feeding by mouth for the month of September, and then get a G tube if she couldn't kick the NG habit by then. Well. She's throwing up so much, and so gaggy and refluxy in general, that we're hardly able to work on oral feeding. She's pretty unlikely to make her deadline, so we want to go ahead and get the surgery over with. <br />
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We bumped up her consult with the surgeon and had that appointment today. In addition to talking about getting a G tube, we discussed an anti-reflux procedure called a <a href="http://en.wikipedia.org/wiki/Nissen_fundoplication">Nissen fundoplication</a>. Reflux is annoying at best, but for Bonnie, it could be really dangerous. With her paralyzed vocal cord (which is probably-but-possibly-not mostly better since her cry is decently loud), she's more likely to aspirate formula into her lungs, which could cause pneumonia. Since her lungs aren't the best, pneumonia could easily land her in the hospital. Also, since she's throwing up so much, she's not getting all the calories she needs. For a girl who has spent a good chunk of her life not gaining weight, she has some catching up to do and needs all the calories she can get. (The good news is that she's up a full pound since she was discharged two weeks ago. Yay Bonnie!)<br />
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For anyone interested, she's already on a couple reflux medications. She's been on Prilosec for a few weeks now, which helps with her stomach pH (i.e. acidity). I feel like the Prilosec is doing what it's supposed to do, so when she refluxes it doesn't *hurt*. But she still feels it come up and it bothers her. Once we got home, her pediatrician decided to try her on Reglan, which helps the stomach empty faster so that there's less to throw up. That actually seemed to help for about two days, but then the throwing up came back in full force. Sad.<br />
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So. Surgery is scheduled for October 9th. She will for sure get a G tube, but the Nissen is questionable. The surgeon feels that it might be too difficult to do since Bonnie is still so little. He said ideally, she'd be about 20+ pounds, and she's currently not quite 11 pounds. Please pray that the surgery will go exactly as God would have it. There are some potential complications to the Nissen which make me nervous, but potential complications of the constant throwing up aren't so great either.<br />
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Here are some pictures of Bonnie's last day in the NICU, as well as a few from our first days at home.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR0zUWoqFWLvuMNR9AJkEuXYzSIHylg9UE_6JNXbBPxzetGjPUVP9IjABQbkamBZ3xqCyFT1WjVYKfY6sEEWKL0n-vNHk2lQHtrNfQ2Ejt5fF_SiKNuiahvdl_PSUj2BDrSbDgH4OsQgh9/s1600/Charleston-lastdays%2526Homethru9-15+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR0zUWoqFWLvuMNR9AJkEuXYzSIHylg9UE_6JNXbBPxzetGjPUVP9IjABQbkamBZ3xqCyFT1WjVYKfY6sEEWKL0n-vNHk2lQHtrNfQ2Ejt5fF_SiKNuiahvdl_PSUj2BDrSbDgH4OsQgh9/s400/Charleston-lastdays%2526Homethru9-15+004.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our favorite neonatologist (Dr. Jenkins!). She took care of Bonnie while she was on ECMO, and she was back on service for Bonnie's last two weeks.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmisKU4X_AWK04tDNUxaa6eeiTAXaAshQC_CQo3RzTpQjVRpCan6AwxaOtt6N836qtOfDRfWYnpmLZD4wqgQZBMKTxiy-iWOwPXFW3QkdeHkIQApim8Q1Jo6pc-rh_p9sBMV3LqAE0hOLF/s1600/Charleston-lastdays%2526Homethru9-15+005.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmisKU4X_AWK04tDNUxaa6eeiTAXaAshQC_CQo3RzTpQjVRpCan6AwxaOtt6N836qtOfDRfWYnpmLZD4wqgQZBMKTxiy-iWOwPXFW3QkdeHkIQApim8Q1Jo6pc-rh_p9sBMV3LqAE0hOLF/s400/Charleston-lastdays%2526Homethru9-15+005.JPG" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie and Karlayne, one of her wonderful primary nurses. We love her! </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdfUcpMfy806rq7g0qE65gLaqVfY8hxi1TUAhmAYCqff_gS_mjXTqmwB8rByO5osv05IQXh9CD_A9PiHK43jXS-E-fqqAXL_MT8acYd0f8Zhl39FmM8Q3HlHi1RqzN8dChHfiYMirwE64v/s1600/Charleston-lastdays%2526Homethru9-15+006.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgdfUcpMfy806rq7g0qE65gLaqVfY8hxi1TUAhmAYCqff_gS_mjXTqmwB8rByO5osv05IQXh9CD_A9PiHK43jXS-E-fqqAXL_MT8acYd0f8Zhl39FmM8Q3HlHi1RqzN8dChHfiYMirwE64v/s400/Charleston-lastdays%2526Homethru9-15+006.JPG" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie and Joan--ECMO nurse extraordinaire. We love her too!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi73DCs5mkIxPFHuw8fMd2FWARp-kpjpOQRIPEX3kD4vwmqgOy9Cpm4qufspaN0ZqHyxdgn1lN_sU11GsNbaVNzn1H3exqRaVbptGSyJ6sXo2V0zFFEGoHcLGmvE5CmA-GUjE-u-al2rZhE/s1600/Charleston-lastdays%2526Homethru9-15+009.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi73DCs5mkIxPFHuw8fMd2FWARp-kpjpOQRIPEX3kD4vwmqgOy9Cpm4qufspaN0ZqHyxdgn1lN_sU11GsNbaVNzn1H3exqRaVbptGSyJ6sXo2V0zFFEGoHcLGmvE5CmA-GUjE-u-al2rZhE/s400/Charleston-lastdays%2526Homethru9-15+009.JPG" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie and Courtenay, another one of her awesome primaries.<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNCQghrNdQfKtTgr-D6IuMnrze1g6XcHBj3E6bPBnGpy6Qjxq22NvnQ-asJoWXFBwg_QS-oMiadQLVcVSwG0GnfErGcvklCvubaSqcsT4MEVTWmNuXusvcWfhPaGBtNY0ibLg4U0zoRFbx/s1600/Charleston-lastdays&Homethru9-15+010.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNCQghrNdQfKtTgr-D6IuMnrze1g6XcHBj3E6bPBnGpy6Qjxq22NvnQ-asJoWXFBwg_QS-oMiadQLVcVSwG0GnfErGcvklCvubaSqcsT4MEVTWmNuXusvcWfhPaGBtNY0ibLg4U0zoRFbx/s400/Charleston-lastdays&Homethru9-15+010.JPG" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not so sure about her carseat.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_oRVI3hBvE7NlzAgEyP6iuIxrb0xY9S7AI1UowyN_FELbt32B-Z8IzICqwWCtT3iH_PEZ0aaGdGIrI5DMZ6durSlfs-IMzVwKl4FhP_oUamXAagMvGx17A8QekJGwIkSvmU1g3tUKR5fF/s1600/Charleston-lastdays&Homethru9-15+019.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_oRVI3hBvE7NlzAgEyP6iuIxrb0xY9S7AI1UowyN_FELbt32B-Z8IzICqwWCtT3iH_PEZ0aaGdGIrI5DMZ6durSlfs-IMzVwKl4FhP_oUamXAagMvGx17A8QekJGwIkSvmU1g3tUKR5fF/s400/Charleston-lastdays&Homethru9-15+019.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loading her up in the car. As soon as we took her outside (for the first time ever in her life) she fell asleep. We were holding up traffic here getting this shot, but whatever. Your baby only comes home from the NICU once.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTWdI_oGzJ5twkpvhrmjEOYLDH2hRk2caWpMASxKX56gO615rj2QfjmRLo-9mkY3pDs997hBC-72hkys0Gmv_XTH5E87jMzysRjac7jrBzeiFNOeUrzOwdH0nVRgaUtFwuLvZRTSQMfwfj/s1600/Charleston-lastdays&Homethru9-15+023.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTWdI_oGzJ5twkpvhrmjEOYLDH2hRk2caWpMASxKX56gO615rj2QfjmRLo-9mkY3pDs997hBC-72hkys0Gmv_XTH5E87jMzysRjac7jrBzeiFNOeUrzOwdH0nVRgaUtFwuLvZRTSQMfwfj/s400/Charleston-lastdays&Homethru9-15+023.JPG" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Stopped at a gas station on the way home and took a little break from the carseat.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhP3ln8ZGaokhc-A_dwjy3zm4EJ5MP62cGmdch3g6SQeQNTjneC1W1FyiY-gpyXS6aR5M_irfOAW4iUuxaPpMo4RcU84taPfGG3bL2me2IKAGGoQXR8Xlhko8pbzeUBI90Jbz1g668vj8h/s1600/Charleston-lastdays&Homethru9-15+035.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhP3ln8ZGaokhc-A_dwjy3zm4EJ5MP62cGmdch3g6SQeQNTjneC1W1FyiY-gpyXS6aR5M_irfOAW4iUuxaPpMo4RcU84taPfGG3bL2me2IKAGGoQXR8Xlhko8pbzeUBI90Jbz1g668vj8h/s400/Charleston-lastdays&Homethru9-15+035.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Henry is the sweetest big brother. We've had a lot of this sort of thing since we got home. He's leaning in to kiss her.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">At home in her swing.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Big brother Henry on game day. Seriously, could he be any cuter??</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com6tag:blogger.com,1999:blog-3033460936977120332.post-48183874953685690552012-09-05T23:19:00.000-04:002012-09-05T23:19:21.910-04:00Last night in CharlestonAs of now, we're still on for going home tomorrow. Bonnie still isn't gaining weight very well, but we're going to let her pediatrician (in *Greenville*, i.e. home) worry about that. She's currently getting fed over an hour, every three hours. They wanted her feeds compressed to 30 minutes before we left, but we're going to work on that at home too. Bonnie's going home with an apnea and heart monitor to be used just while her feeding is going in, in case her NG tube misfires (i.e. ends up in her lungs instead of her stomach). We're also taking home a feeding pump, which looks like <a href="http://www.covidien.com/criticalcare/pagebuilder.aspx?topicID=156963&xsl=xsl/campaignPage.xsl">this</a>. I got trained on the new equipment (monitor and pump) today, and it hit me how much stuff we're bringing into the house, and how much of a production it's going to be to feed her. Holy cow. We'll get a routine down pretty quickly I'm sure, but I think the first few days are going to be a little insane. <br />
<br />
Also, I'm trying to remember that when Bonnie's home, I am her *mother*, not her *nurse*. The Helms house isn't turning into a hospital. I plan on enjoying having my child home and not letting her medical needs overwhelm us. And really, she's not *that* medically complex. She doesn't eat, and she's on three medications. That's totally manageable.<br />
<br />
Bonnie had another echo yesterday, because they discontinued her sildenafil (Viagra!), which was started back in the dark days of ECMO to help with her pulmonary hypertension. They wanted to see how her heart looked without the medicine. Turns out, it looks *great*. No evidence of pulmonary hypertension. Miracle. Pulmonary hypertension was her ticket to ECMO back in the day. It's a beast. And it is *gone*. Praise God. Also, they checked her urine yesterday and found that it had blood and protein in it. This is likely a lingering effect of when she was in kidney failure, but we'll follow up with the pediatric nephrologist to keep an eye on it.<br />
<br />
Things are likely to be kind of crazy for the next few days, but I will update with homecoming pictures when I can. Until then, here are some cute pictures of Bonnie enjoying her pacifier (formerly a rare event, but becoming more common--which is a good sign for future eating endeavors!). Please pray for an uneventful (3+ hour) trip home tomorrow and a smooth first night back on the home front.<br />
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com4tag:blogger.com,1999:blog-3033460936977120332.post-91435928213375702312012-09-01T21:20:00.000-04:002012-09-01T21:20:17.682-04:00Time to go.Big news today. Big. Ready for it? We. Are. Going. Home. Next week! On Thursday! <span style="font-size: xx-small;">(This is, of course, barring any major disasters such as failure to gain weight between now and then.) </span><br />
<span style="font-size: x-small;"><br /></span>
Here's how this all came to pass. A couple days ago, we found out there was an opening in the Level 2 nursery (in Sick Baby Land, a Level 2 nursery is between the newborn nursery and the NICU, which is Level 3). Bonnie's been a Level 2 baby for awhile now, even though she's been in the NICU the whole time. She's not critically ill and doesn't even have an IV anymore. Just learning to eat and get off some drugs. Anyway, a space came open in Level 2 and there was some discussion about whether it would be a good idea to move Bonnie there. I've never been there to see for myself, but I hear it's quieter and more roomy. Indeed, there has been a lot of hustle and bustle in Bonnie's little corner of the unit lately, and the prospect of a quieter space was appealing. <br />
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So. That day we had a discussion with Dr. J (love her) about whether moving to Level 2 would be a good plan. The sticking point was that if Bonnie ends up needing a G tube, she would likely have to go back to the NICU following that surgery (might still be on the ventilator for awhile post-op). Going to Level 2, only to go back to NICU a few days later, didn't seem worth it.<br />
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So *then* we had a very long talk about going home with a G tube (requires surgery but more stable) versus an NG tube (no surgery but somewhat more risky). I won't get into all of it, but Jonathan and I have pretty strong feelings about giving Bonnie a chance to learn to eat before we offer her up to the surgeon yet again. Everyone agrees that babies do better at home than in the hospital, especially when they get to be a little older (like Bonnie) and are aware of everything going on around them. It's overstimulating. All kinds of alarms going off, people bustling all around, getting woken up and messed with *all day long*. Anyway, we want to give her a fair shot at learning to eat, and we want her to do it in an optimal environment.<br />
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Dr. J called up the surgeon, and she must have caught him in a charitable mood, because he said that he'd be willing to send her home with either an NG or a G tube. So what *that* meant was that if we went the NG route, the only thing standing between Bonnie and sweet sweet freedom was getting off her Ativan. Well. She's on track to have her last dose of Ativan tomorrow (Sunday) night. Then they want to watch her for a couple days to make sure she does okay without it. They also want to make sure she's gaining weight. <br />
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The long-term plan is to go home with the NG and give her the month of September to learn to eat by mouth. If that doesn't happen, we'll come back to Charleston for a G tube. Obviously I hope it doesn't come to that, but if it does, at least I'll know we gave her a chance.<br />
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The Bonnie update is that she's still not interested in eating by mouth really at all. In fact, the past couple times we've tried, she gets *really* ticked off about it. We're giving her a break for a couple days to reset and will try again on Monday. She had another swallow study yesterday, which showed that she has gotten better about protecting her airway when she swallows. Hopefully we'll be able to stop thickening her milk, because her speech therapists feels like that little bit of extra texture is contributing to her gagging, which then contributes to her not wanting to suck from a bottle.<br />
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I think I'm still in shock about going home in a few days. I'm thrilled, but there is a *lot* to do between now and then. We've been living three hours from home for close to three months now, so we have a lot to pack up. Also a lot of follow up appointments to set up, training to receive, equipment to learn, etc. Please pray for what's left of my mental and emotional faculties to get through these next few days. And please pray that everything goes according to plan and that we can take our sweet girl home on Thursday.<br />
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Some pictures, of course:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjddPIeMXzQQ9fD5fNBQbd46M2Usx9c1H-qHKezCITlfFWQGfdfdtEFV1VH2__kEByBEEZJ2hR5h_gLSbeFEYUGGsx-NDgOd8nZYccvH3R8SBctsIEQPjON2EmnEJDfHjZvqnyOAwgaNTT4/s1600/Charleston8-27thru9-1+001.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjddPIeMXzQQ9fD5fNBQbd46M2Usx9c1H-qHKezCITlfFWQGfdfdtEFV1VH2__kEByBEEZJ2hR5h_gLSbeFEYUGGsx-NDgOd8nZYccvH3R8SBctsIEQPjON2EmnEJDfHjZvqnyOAwgaNTT4/s640/Charleston8-27thru9-1+001.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this picture. That's my dad holding her. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8C0KTj_5FG2yKxJ-OyjZ8kBGGfo4rWmVlDQWeLmVBepmP7wOm6LVQvi1yH_fZMICzxL_BV3t-akKjcO_yhg0Xymhov4PK-J_CXltQXvaqEnIkYGzO6VyLvZCgPcrhMiW2KP7KpPKgdymt/s1600/Charleston8-27thru9-1+008.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8C0KTj_5FG2yKxJ-OyjZ8kBGGfo4rWmVlDQWeLmVBepmP7wOm6LVQvi1yH_fZMICzxL_BV3t-akKjcO_yhg0Xymhov4PK-J_CXltQXvaqEnIkYGzO6VyLvZCgPcrhMiW2KP7KpPKgdymt/s640/Charleston8-27thru9-1+008.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuteness.<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvbz2CdMIVTOrvel5NqIHQLY9XexVoJGPM94DNqKE7MtRZ-aU1tLJrz-9-6mWFfKC0w8z7IFBh5jC8WMY4i2JZ7EwVa7eehM8FotlwcSpxC1kX5VAF5jrVJGArjV0N14Y_3mqLVnqmjmyi/s1600/Charleston8-27thru9-1+010.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvbz2CdMIVTOrvel5NqIHQLY9XexVoJGPM94DNqKE7MtRZ-aU1tLJrz-9-6mWFfKC0w8z7IFBh5jC8WMY4i2JZ7EwVa7eehM8FotlwcSpxC1kX5VAF5jrVJGArjV0N14Y_3mqLVnqmjmyi/s400/Charleston8-27thru9-1+010.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Yet more cuteness.<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdAe9vjsxC6WYS1qn7JrAKor6wHOvmlQq86lk_BLxpdBOVXwgT5Wc8hcuOZfQCvyn12mIswy1oiY1lCuTqMDEB25toVZ0hpwsD16C45lqRoMi5fZtZo4SOgfKYVC_DTp-KdgZlkaA49BDj/s1600/Charleston8-27thru9-1+015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdAe9vjsxC6WYS1qn7JrAKor6wHOvmlQq86lk_BLxpdBOVXwgT5Wc8hcuOZfQCvyn12mIswy1oiY1lCuTqMDEB25toVZ0hpwsD16C45lqRoMi5fZtZo4SOgfKYVC_DTp-KdgZlkaA49BDj/s400/Charleston8-27thru9-1+015.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleepy girl rocking the leggings.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ2qvlji1m8emS0BUmYX0pqZMUjJ3K7RjtOJ8J0931MFiFluOdnKgjXNZLDWAggCvPqHCNddGMfCH1pOZSMAHj0feefv12mpJ86QhnWZ5iTVjh-e1NqNnASeJK-ow8F8PIvnQq6yM2PKlu/s1600/Charleston8-27thru9-1+028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ2qvlji1m8emS0BUmYX0pqZMUjJ3K7RjtOJ8J0931MFiFluOdnKgjXNZLDWAggCvPqHCNddGMfCH1pOZSMAHj0feefv12mpJ86QhnWZ5iTVjh-e1NqNnASeJK-ow8F8PIvnQq6yM2PKlu/s400/Charleston8-27thru9-1+028.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Up to no good.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnIkxsksBdFSFcbsZup91lU4ld9n-DIy_hdijAE2cPonuGdrGyP1feg-PzdP5z6iHIQlbIDrMV_-p97SF1fDYo-vuTXaQl3u8mlh0WXc6q6P8p2zcEm4QZoFNvbTCa6D7rPsrIKIoSIIcx/s1600/Charleston8-27thru9-1+029.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnIkxsksBdFSFcbsZup91lU4ld9n-DIy_hdijAE2cPonuGdrGyP1feg-PzdP5z6iHIQlbIDrMV_-p97SF1fDYo-vuTXaQl3u8mlh0WXc6q6P8p2zcEm4QZoFNvbTCa6D7rPsrIKIoSIIcx/s400/Charleston8-27thru9-1+029.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Here's one for the occupational therapists in the crowd--she's figured out how to get her hands to her mouth. Big deal for her future eating endeavors (desensitizing her gag reflex).<br /><br /><br /><br /><div style="text-align: left;">
<span style="font-size: small;">And a couple funny (to me) things, to be filed under "Time to Go." Apart from my subjective feeling of losing my mind, here are two incidents which illustrate that we have been here long enough. First, one of the unit secretaries had some sort of foot surgery when Bonnie was a few weeks old. She's been out of work for quite awhile. I saw her yesterday in the NICU and she said, "Why are you guys back?" My response: "We're not *back*. We never left." </span></div>
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<span style="font-size: small;">Second, Jonathan and I were talking about maybe painting our TV room at home and were going back and forth on whether to paint the brick fireplace. I'm going on and on about how once you paint over brick you can never go back (you know, because now there's paint on it). He gives me a funny look and says, "Les. It's already painted. It's the same color as the walls." </span></div>
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<span style="font-size: small;">Me: "No it's not." </span></div>
<div style="text-align: left;">
<span style="font-size: small;">Him: "It is. It's white." </span></div>
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<span style="font-size: small;">Me: "Noooo it's not." </span></div>
<div style="text-align: left;">
<span style="font-size: small;">Him: <produces a picture of said brick fireplace which is indeed the same color as the walls, and has been since we moved in three years ago> </span></div>
<div style="text-align: left;">
<span style="font-size: small;">Me: "Oh." </span></div>
<div style="text-align: left;">
<span style="font-size: small;">Him: "You need to go home."</span></div>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com6tag:blogger.com,1999:blog-3033460936977120332.post-86011109834041364412012-08-26T21:11:00.000-04:002012-08-26T21:11:32.282-04:00Time to eat, baby.I haven't updated in the past few days because I've been pretty frustrated with the way things have been going with Bonnie. I'm at the point where I feel like she's being held hostage in the hospital, and various random events and medical decisions are conspiring to keep her here forever. Like, "We want her to wake up and learn to eat, but *first* we're going to increase the dose of this medicine that makes her sleepy! Muahaha!" Or, "We don't want her to gag because then she can't eat, but *first* we're going to take away one of her reflux medicines that was keeping her from gagging! HaHA!" And the ever popular, "She needs to be hungry to eat, but we're going to keep her on continuous feeds for awhile so that her belly's never empty!" I'm sure there is sound medical reasoning behind these decisions, I'm just not privy to it. And from my perspective, it sometimes seems like a giant mess.<div>
<br /><div>
There's been lots of talk lately about possibly getting a <a href="http://kidshealth.org/parent/system/surgery/g_tube.html">g-tube</a> if Bonnie can't learn to eat by mouth in the next couple weeks. Honestly, it shouldn't be that big of a deal, but it's a big deal to me. I don't want her to have another surgery. I don't want some foreign object semi-permanently attached to her. I want her to eat, and I want her to come home. The other option for kids who can't or won't eat by mouth is a nasogastric tube (NG tube). That's what she's got right now--just a teeny little tube that goes in through her nose and down to her stomach. The problem with those is that they don't stay put very well. If you're not careful, the tube ends up in a lung--dumping a bunch of milk or formula into a lung would clearly lead to disaster. Especially if you've only got one good(ish) lung to start with. The powers that be don't like sending kids home with those because bad things can happen. I do not want these bad things to happen, and I also don't want Bonnie to have a g-tube. Therefore, she needs to learn to eat.</div>
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This learning to eat business is really tricky. If you've never tried to feed a baby with an oral aversion, then lucky you. Here's how it usually goes. If she's awake and in a good mood, we start with a pacifier. But you can't just pop it in her mouth like you could with a regular baby. You have to rub it on her lip first to get her used to the idea. You can try to put it in her mouth, but she has a pretty uncoordinated suck most of the time, so her tongue is all over the place. If the pacifier hits the back of her tongue, she'll probably gag. If she's having an especially gaggy day, she might spit up. But lets say we get the pacifier going successfully. We'll give her a minute or two to get the idea of sucking on something in her head. Oh but wait, the goal here is actually to *consume* milk. So then we need to get a bottle nipple in her mouth. No matter how stealthily you switch out the pacifier for the bottle, she notices and doesn't appreciate it. The bottle nipple is softer than the pacifier, for one thing. Also, if you suck on the bottle, *milk* comes out. That's all well and good, except that now there's liquid hitting the back of her throat. Gag. (And this is only if she actually decides to suck on the bottle. Half the time she either chomps on it or rolls her tongue around it or just flat out refuses.) If all the stars align, she'll take 10 cc of milk. That's a third of an ounce. That's the best she's ever done, and that was over three weeks ago. For reference, "full feeds" would be about 80cc eight times a day. So you see what we're up against. </div>
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There are a few encouraging things on the eating front in the past day or so. First, I think they've finally gotten her reflux medicine straightened out. She's on Prilosec twice a day, and is a *much* happier baby now that that's on board. She's also been less gaggy lately, probably partly because she's not so refluxy (technically she does still have reflux, it just doesn't burn and hurt as much). Also, today I noticed she's really been interested in putting her hands in her mouth. That's good because it will help her desensitize herself to oral stimulation. Also good for self-soothing and whatnot. Last, I got her to take 9cc of milk via the paci trainer today. This is huge! She hasn't done that in weeks! The pacifier trainer is this cool little gadget that the occupational therapists rigged up for us. On one end is a syringe with milk in it. On the other end is a pacifier. These are connected by a thin tube (same tube they use for NG tubes). When using this device, Bonnie's got the pacifier in her mouth and I've got control of the syringe of milk. I don't actually squirt milk into her mouth, but wait for her to suck hard enough to make the syringe move. It's basically a really really slow flow nipple, and it helps her control the flow of milk better. Anyway, I was so super proud of my girl that she caught on to this (for the third time...see <a href="http://babybeehelms.blogspot.com/2012/08/happy-2-months-bonnie.html">this post</a> and <a href="http://babybeehelms.blogspot.com/2012/08/various-bits-of-drama.html">this one</a> for why that is) today!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPag2iz98N7GtRn0umhtpkXen-x6okYNKVC3kT7t11ETGqsE_BgTSBsSGiwwV7KF-r3HrkXP6xNICtuV4YeKPl9zhYHRsDP0G1naERSqBGzvRn-uadBW0l0HZ7aUNwcdZ5aqa979EGYnSW/s1600/Charleston8-22&23&24&25&26+128.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPag2iz98N7GtRn0umhtpkXen-x6okYNKVC3kT7t11ETGqsE_BgTSBsSGiwwV7KF-r3HrkXP6xNICtuV4YeKPl9zhYHRsDP0G1naERSqBGzvRn-uadBW0l0HZ7aUNwcdZ5aqa979EGYnSW/s400/Charleston8-22&23&24&25&26+128.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The paci trainer. Cute, eh?</td></tr>
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So, despite the above frustrations, I'm trying to remind myself to be grateful for where we are. For one thing, I have a living, breathing (without oxygen!) baby girl that I will get to take home with me. I pray that I never take that for granted. Bonnie's hellish ECMO days seem like a lifetime ago, but we are so very blessed to have her still with us after all that. Also, Bonnie's nurses are great and they love her. I think the best gift you can give a parent is to love their child. She often has visitors stopping by her bed to say hi and love on her. </div>
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Please continue to pray for Bonnie's eating skills. I know she'll figure it out eventually, but if "eventually" means 6 months from now, she'll probably go home with a g-tube. Not the end of the world, but I'd rather not if we can help it. </div>
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If you've read this far, I owe you some cute Bonnie (and bonus Henry) pictures. Here you go!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiojARsFhuzHd2WIEEqDUq10pOp9zBNOdEs6cYwgeyqHCgpMdpuCePt-DCTCGAtMhlDM8poDtbU99m8BcGd5oU6H1_cxJM4eR2Ihu_DCe6HPlhabG3t73GNmU2RAXW-U3x1XFdnWNns12dO/s1600/Charleston8-22&23&24&25&26+005.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiojARsFhuzHd2WIEEqDUq10pOp9zBNOdEs6cYwgeyqHCgpMdpuCePt-DCTCGAtMhlDM8poDtbU99m8BcGd5oU6H1_cxJM4eR2Ihu_DCe6HPlhabG3t73GNmU2RAXW-U3x1XFdnWNns12dO/s640/Charleston8-22&23&24&25&26+005.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy girl :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLm5Dl6rFhQ2gR6H3s6ibw57OY7hb6mh0jA-BbbW4tgLCXzO3-jKeFyqtvNIB5b_x16KICPIOXj68SEqb7A70N9iVBJiz4fNnvGhi9P4H7M6e7x4M4Qk4SI0fEY3hs21aBqaa2jDeajcHf/s1600/Charleston8-22&23&24&25&26+006.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLm5Dl6rFhQ2gR6H3s6ibw57OY7hb6mh0jA-BbbW4tgLCXzO3-jKeFyqtvNIB5b_x16KICPIOXj68SEqb7A70N9iVBJiz4fNnvGhi9P4H7M6e7x4M4Qk4SI0fEY3hs21aBqaa2jDeajcHf/s400/Charleston8-22&23&24&25&26+006.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">What's so funny?? <br />(Those shaved spots on the side of her head are where they were looking for a place to start an IV the other day.)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio8_Q7Eh1l_5UxxywY9lwO3iFOWWeGGcdFywR81fmQwsGQo65zm5KaAA8qATau7GRgN9_jV4YLvS1HCET31KDo1jJXVz2hGQ-ztapqoI_FG5w_lUq0pWaUokU2V8rVFCwScRigbbfyXL5C/s1600/Charleston8-22&23&24&25&26+123.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEio8_Q7Eh1l_5UxxywY9lwO3iFOWWeGGcdFywR81fmQwsGQo65zm5KaAA8qATau7GRgN9_jV4YLvS1HCET31KDo1jJXVz2hGQ-ztapqoI_FG5w_lUq0pWaUokU2V8rVFCwScRigbbfyXL5C/s400/Charleston8-22&23&24&25&26+123.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Onesie tie-dyed by aunt Ellen. So stylish.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRHBTojy_cHTUA45gUje-URmrvcs8D5hYDVFYsex7juAQzHi_JSpsCvz37OqSlQyT7nOEXC4v2OgVs5ozc1G4POpn155BsC837She3r4KNtSfTIyv-1QuK1XX56xLUs6cD7vqPW7ltFBDy/s1600/Charleston8-22&23&24&25&26+127.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRHBTojy_cHTUA45gUje-URmrvcs8D5hYDVFYsex7juAQzHi_JSpsCvz37OqSlQyT7nOEXC4v2OgVs5ozc1G4POpn155BsC837She3r4KNtSfTIyv-1QuK1XX56xLUs6cD7vqPW7ltFBDy/s400/Charleston8-22&23&24&25&26+127.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this girl.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkY8twWjebWn0LDfH9JUJN42ZKSusA-2QcCUexsInBoqcSYVC2Wmu8WfpYFaQpNEfDfXWOU2WC-G1LE3ykH0PyOYTKlGPYIr82xLqinaBptmx72GonWi3vMSrfpN-oqIj295wq8OFOuGcl/s1600/Charleston8-22&23&24&25&26+141.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkY8twWjebWn0LDfH9JUJN42ZKSusA-2QcCUexsInBoqcSYVC2Wmu8WfpYFaQpNEfDfXWOU2WC-G1LE3ykH0PyOYTKlGPYIr82xLqinaBptmx72GonWi3vMSrfpN-oqIj295wq8OFOuGcl/s640/Charleston8-22&23&24&25&26+141.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And this guy.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8mLgMt2FqPBHzHcS6A3BoSsG5iYzW30Zsk88ksQCoYlN2lImgXKdcWqJzlxvGGWrtI4HsbYeTvNBstbbSgaHacbinhVFQedLm-jWBLT7WHbWvihjCZR50vnDka-mj3WIFavfPb3HzGNCP/s1600/Charleston8-22&23&24&25&26+142.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8mLgMt2FqPBHzHcS6A3BoSsG5iYzW30Zsk88ksQCoYlN2lImgXKdcWqJzlxvGGWrtI4HsbYeTvNBstbbSgaHacbinhVFQedLm-jWBLT7WHbWvihjCZR50vnDka-mj3WIFavfPb3HzGNCP/s640/Charleston8-22&23&24&25&26+142.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My handsome little buddy.</td></tr>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com2tag:blogger.com,1999:blog-3033460936977120332.post-63463060098624726992012-08-21T21:47:00.000-04:002012-08-21T21:47:42.983-04:00Various bits of drama.Things got interesting after my last blog update. And by "interesting" I mean Bonnie started throwing up again. It only lasted a night, but her feeds were stopped (again), and they started her on TPN and lipids for nutrition. Meanwhile, it got to be really hard to keep an IV in her. Two nights ago her IV went bad and she ended up missing a dose of morphine because of it. (She's still on morphine because she's *still* weaning off all her pain meds/sedation from when she was on ECMO.) Because she's physically dependent on morphine, this did not go well. Major freak out. To keep that from happening again, the decision was made to put in a PICC line, which is an IV that goes in further and is more stable than a peripheral IV. That was yesterday.<br />
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Since the second round of vomiting, they've been going up very slowly on her feeds. Right now she's getting continuous feeds at 17cc/hour. That's about 2/3 the total volume of milk she was getting before this recent craziness. We also haven't been able to work on taking a bottle for about a week. Lost time. Super frustrating.<br />
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In other news, it has become apparent that Bonnie is having a lot of pain from acid reflux. She'll be fast asleep and then start crying and get all sad-faced like she's hurting. They checked her gastric (stomach) pH several days ago and ended up increasing her dose of Zantac (which she's been on from day 1). That may have helped some, but they checked her pH again today because she still seemed to be in pain. It was around 2 and they like it to be at 5 (lower numbers=higher acidity=ouch), so they added some Prilosec. Hopefully that'll help.<br />
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Also, with all the IV fluids and whatnot, Bonnie has gotten puffy over the last several days. She's been gaining weight too quickly for it not to be water weight, and her lungs sounded wet. Soooo to remedy this, she got a dose of Lasix today. Over the next couple hours, she peed off almost 8 ounces of fluid. I can't think of a clever analogy to illustrate how much that is, but trust me when I say it's a lot when you only weigh 9 pounds.<br />
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Here are some pictures from the past few days.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipLYyAnIfFEabwhyphenhyphenw7Tw5o77aokdHZQQ9G1CiwG1jg2C5rQFUOwsW51Bz_m-TYo6dED-2fkcLBvhcbl4KvrRVNmn7vPKluqueFHVA5Uf6OEEbd3QYnp3lqPe0VQVf9irANFS2NQ0ISyRHt/s1600/Charleston8-16%252617%252618%252619%252620%252621+014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipLYyAnIfFEabwhyphenhyphenw7Tw5o77aokdHZQQ9G1CiwG1jg2C5rQFUOwsW51Bz_m-TYo6dED-2fkcLBvhcbl4KvrRVNmn7vPKluqueFHVA5Uf6OEEbd3QYnp3lqPe0VQVf9irANFS2NQ0ISyRHt/s400/Charleston8-16%252617%252618%252619%252620%252621+014.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Henry in a tree. He was looking at me and doing his "surprised face".</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid3yR69GHjW49MsMiMmkvAZqkN6vbfKgJPK5n_Ffoe6fK1JWHbhyphenhyphendOPDq0mpqTZTK0fvcIumoduojPx2eEXEqdE87omhyIVskkvckkbbL8EFIROqK8WuroqXTpwVHAbJzXJfcXpo_d4x87/s1600/Charleston8-16%252617%252618%252619%252620%252621+021.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid3yR69GHjW49MsMiMmkvAZqkN6vbfKgJPK5n_Ffoe6fK1JWHbhyphenhyphendOPDq0mpqTZTK0fvcIumoduojPx2eEXEqdE87omhyIVskkvckkbbL8EFIROqK8WuroqXTpwVHAbJzXJfcXpo_d4x87/s640/Charleston8-16%252617%252618%252619%252620%252621+021.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My little monkey.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU9Z6sAy-nn26yZ1l-bAQfXogQDwTNi1Oz_09nN29lYEP_2OAM8JvQjWkIgMEE1zJBI6XlJpmNAvhVWak9_iXg_ccMr4vZKEIUMSNxYB_jyurx_7jp5bUoJyvMc-E6PqomlA66DY5oTO0X/s1600/Charleston8-16%252617%252618%252619%252620%252621+028.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU9Z6sAy-nn26yZ1l-bAQfXogQDwTNi1Oz_09nN29lYEP_2OAM8JvQjWkIgMEE1zJBI6XlJpmNAvhVWak9_iXg_ccMr4vZKEIUMSNxYB_jyurx_7jp5bUoJyvMc-E6PqomlA66DY5oTO0X/s640/Charleston8-16%252617%252618%252619%252620%252621+028.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I love this guy.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgklCGwBSBRcIck2eSFtdSrA_i0-ZDlqvYvwce7ONHBQsAkK4ftLHV4CWf2jv-16hF_mZZBPXcNRLlpbPS31cVTkPv90M7qWRYCBOm10Dx-MJUXFxc8PkWUoWGF0veugyMo06BbzkgVUxl6/s1600/Charleston8-16%252617%252618%252619%252620%252621+040.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgklCGwBSBRcIck2eSFtdSrA_i0-ZDlqvYvwce7ONHBQsAkK4ftLHV4CWf2jv-16hF_mZZBPXcNRLlpbPS31cVTkPv90M7qWRYCBOm10Dx-MJUXFxc8PkWUoWGF0veugyMo06BbzkgVUxl6/s640/Charleston8-16%252617%252618%252619%252620%252621+040.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Please note the legwarmers. This is Bonnie's Jane Fonda look.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL5jmqDPbbk1sJH2aAKtKhN0z8UUxzAX4YOzqnMaRdvYrr9MBuK6Z1NojH-qy_XBFciJSSEeL73OKE3jTK_H1-RhSS4v5G17VcCLjW4VKmKx26sG6h0MPXbvdc0Uj9w-n7t-V2TAWXUDhE/s1600/Charleston8-16&17&18&19&20&21+047.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL5jmqDPbbk1sJH2aAKtKhN0z8UUxzAX4YOzqnMaRdvYrr9MBuK6Z1NojH-qy_XBFciJSSEeL73OKE3jTK_H1-RhSS4v5G17VcCLjW4VKmKx26sG6h0MPXbvdc0Uj9w-n7t-V2TAWXUDhE/s400/Charleston8-16&17&18&19&20&21+047.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hmmm, does something look different? Something missing, perhaps?</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd0oncXv3mlqSsZ6h__nOIcwhWs6jDx9sGP7bC023AciwMzuiXDs72zsbNVuXVjP5eZOJRcUNq0nfbiv2sodxkFVOLE0CrC_V2RGfPPJ38x6NIzfogZaZ1lmODTHXT_DSh388KQbHhFTOi/s1600/Charleston8-16&17&18&19&20&21+046.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd0oncXv3mlqSsZ6h__nOIcwhWs6jDx9sGP7bC023AciwMzuiXDs72zsbNVuXVjP5eZOJRcUNq0nfbiv2sodxkFVOLE0CrC_V2RGfPPJ38x6NIzfogZaZ1lmODTHXT_DSh388KQbHhFTOi/s640/Charleston8-16&17&18&19&20&21+046.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">That's right! No oxygen!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL1n-_avFgUZ83SB86qD3wF7uyr0zu4fXcHGSj4QIjZgOFIZpXCmvTaSGKKypKJViC4kufJG9z8yNhcA08Q_1pQP6eqpZ8sEZSFRq4ea4mW7OwiBaR2dbK5i3vHygh6rbAD2o7e8opqyj7/s1600/Charleston8-16&17&18&19&20&21+049.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgL1n-_avFgUZ83SB86qD3wF7uyr0zu4fXcHGSj4QIjZgOFIZpXCmvTaSGKKypKJViC4kufJG9z8yNhcA08Q_1pQP6eqpZ8sEZSFRq4ea4mW7OwiBaR2dbK5i3vHygh6rbAD2o7e8opqyj7/s640/Charleston8-16&17&18&19&20&21+049.JPG" width="424" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Chillin on an exercise ball with no oxygen. Occupational therapy is cray-zay.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Zzz...</td></tr>
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Please continue to pray for little Bonnie Bee. She does seem to be feeling better the past couple days, but we really need to get going again on the eating and weaning. She'll be eleven weeks old in two days. Time to get on outta here.Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com8tag:blogger.com,1999:blog-3033460936977120332.post-12582059461133186482012-08-16T22:20:00.001-04:002012-08-16T22:20:43.267-04:00Itsy bitsy update.Just a quick update to let everybody know that Bonnie had a much better day today. All her various tests yesterday came back normal and they started feeding her again through her NG tube today. They stopped fortifying her milk (they'd been adding powdered formula to the breastmilk to increase calories so she'd gain weight), in case it was the formula making her sick. Henry was allergic to milk protein as a baby so that's very possible. Anyway, so far so good today with Bonnie--no throwing up, and she got some good rest. Onward to bigger and better things.<br />
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<tr><td class="tr-caption" style="text-align: center;">#378 in the "Bonnie sleeping" series</td></tr>
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And in other news, Bonnie's CDH buddy <a href="http://abbylou9.blogspot.com/">Parker</a> got to go home today! So excited for this little guy and his family. God is good.Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com4tag:blogger.com,1999:blog-3033460936977120332.post-41265335874855008032012-08-15T22:14:00.000-04:002012-08-15T22:14:14.369-04:00Belly issues.CDH babies are notorious for having reflux. Along with this often comes spitting up or throwing up, which Bonnie has had sporadically since they started feeding her (via NG tube). It would be a little spit here and there, usually when she was upset about something. She'd also get more spitty when her drugs were weaned because that can be a symptom of drug withdrawal. Well, over the past 36 hours or so, the throwing up kicked into high gear.<br />
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Without getting too graphic about my child's GI issues, the summary is that overnight last night, she threw up after every feeding, in a projectile-ish fashion. This was really not the news I wanted when we arrived at the NICU this morning. She'd had a pretty dramatic throw-up event yesterday afternoon, after which she screamed hysterically until she finally conked out. When we arrived this morning, they had just taken an x-ray to look for possible reherniation (and whatever else an x-ray might reveal) which could be causing this sudden onset of vomiting. Good news=diaphragm is still intact. Praise God.<br />
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So this morning I was holding my peacefully sleeping baby girl when out of *nowhere* she starts throwing up. Again, in a borderline projectile fashion. It was really pitiful, and it made her really upset. Screaming, flailing...screaming. I finally got her cleaned up and calmed down again, when The Surgery Resident came walking up. (Apologies to any surgeons, future surgeons, and friends or relatives of surgeons in the crowd, but the surgery residents, as a rule, drive me nuts. Wait til your baby's in the hospital and you'll find out why.) She was nice enough and asked lots of questions about what's been going on with Bonnie, trying to determine, I guess, if this was a problem that might require surgical intervention. And/or to determine if it might be related to her previous hernia repair. After the questioning came, "Do you mind if I look at her belly?" Fine. So Bonnie got her belly poked and mashed, which woke her up and ticked her off. Not two minutes later, Surgery Resident #2 (who Jonathan refers to alternately as "Jethro" and "The Man in Black"...because he was wearing all black, not because he bears any resemblance to Johnny Cash) walks up. Again wants to poke her belly. *Fine*. Again with the screaming, ticked off baby. Strong consideration given to answering, "Do you mind if I examine her belly?" with, "I'd rather you not, thanks."<br />
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After all the throwing up, little gal was getting dehydrated and needed to have an IV started to get some fluids. There were also orders in place for an abdominal ultrasound to look for <a href="http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001965/">pyloric stenosis</a>, and an <a href="http://www.webmd.com/digestive-disorders/upper-gastrointestinal-ugi-series">upper GI</a> to look for an obstruction. And oh yeah, on top of (or because of) the throwing up, there are drug weaning and withdrawal issues going on. If you throw up your morphine or ativan, you're going to experience withdrawal symptoms because your body didn't absorb the drug...which is going to make you throw up (because vomiting can be a sign of withdrawal), which is going to make the withdrawal worse. And on and on.<br />
<br />At this point in the day, I was on the verge of losing it. Watching my child scream in pain while there might be something very bad wrong with her was, frankly, terrible. (For comparison, it was also terrible and scary having her on ECMO, but at least then she didn't appear to be *suffering*.) To avert a nervous breakdown--because I'm not sure my insurance covers inpatient psychiatric care--Jonathan and I got the heck out of Dodge and went to lunch and ran some errands. By the time we got back a couple hours later, the clouds had parted and all was right with the world.<br />
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Bonnie was peacefully sleeping, receiving refreshing fluids through her shiny new IV. She had already had her abdominal ultrasound and upper GI, and preliminary results of those looked good. It's still pretty unclear why she suddenly started vomiting every single feeding, but at least it doesn't appear to be anything anatomical that would require surgical correction. <br />
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Please pray for Bonnie's belly troubles and that she can start tolerating her milk. They're going to try to resume her feeds tomorrow and see how she does.<br />
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Some pictures! First one is from a couple days ago, but it's here because she's so flippin cute.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUbV_MbmM8BcCfut1SxER2F7Q2yo2EsuIO9YUHWE6Uxta7kyWoPVDbhIyej5mj9B45_biFrl1ZS9L4VFUMz0cQJdGTY0gIJXFtt_WCk4M0oPiGO_QkO_5MNY72VawwOPdLP3GbhDBnB9yr/s1600/Charleston8-12&13&14&15+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUbV_MbmM8BcCfut1SxER2F7Q2yo2EsuIO9YUHWE6Uxta7kyWoPVDbhIyej5mj9B45_biFrl1ZS9L4VFUMz0cQJdGTY0gIJXFtt_WCk4M0oPiGO_QkO_5MNY72VawwOPdLP3GbhDBnB9yr/s400/Charleston8-12&13&14&15+004.JPG" width="265" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A couple days ago--hanging out with Momma.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcRoHv_zKDEJtp4ZFva-3JlEzCICiMMacgXKCmPssgqxx-dG5xZ3s4dQVOSyHffmBTh3JmEcVLYqtkieUzUaTtZd9pE_VKl0BBU1CHjGi2U8VjNBx6TDUb80HCI1lJ9KeFu-rdqGLUdMZe/s1600/Charleston8-12&13&14&15+022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcRoHv_zKDEJtp4ZFva-3JlEzCICiMMacgXKCmPssgqxx-dG5xZ3s4dQVOSyHffmBTh3JmEcVLYqtkieUzUaTtZd9pE_VKl0BBU1CHjGi2U8VjNBx6TDUb80HCI1lJ9KeFu-rdqGLUdMZe/s400/Charleston8-12&13&14&15+022.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sleeping peacefully after this morning's ordeal. By the way, look at those cheeks!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifbDiyobCaY1c4wzba3RAMVRWn_a2ceH153kj7g7bDpKw5Z6Xk_3vgLmrdqOmmcKNETSYsCHk4DAN-7jQqPa3ZHjOtejstORw1JyODEb4YUdRlfIZKldJb760GWIiku-bt8fHd-8d3nmvz/s1600/Charleston8-12&13&14&15+023.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifbDiyobCaY1c4wzba3RAMVRWn_a2ceH153kj7g7bDpKw5Z6Xk_3vgLmrdqOmmcKNETSYsCHk4DAN-7jQqPa3ZHjOtejstORw1JyODEb4YUdRlfIZKldJb760GWIiku-bt8fHd-8d3nmvz/s400/Charleston8-12&13&14&15+023.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">IV in her sweet little hand.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2w0t9J5xaP4TV9QohnSv7H_WqI3BfMXFw7vRP6s1y-vRBJZL0xAMyILlGLjxRz3npGfK17SdngjzHMBGOkhSMnF01I6f9NHtrFxzFnD-YRuDWd5wWPGHe0NnM9oA4QqYC__pefG8bkAxi/s1600/Charleston8-12&13&14&15+024.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2w0t9J5xaP4TV9QohnSv7H_WqI3BfMXFw7vRP6s1y-vRBJZL0xAMyILlGLjxRz3npGfK17SdngjzHMBGOkhSMnF01I6f9NHtrFxzFnD-YRuDWd5wWPGHe0NnM9oA4QqYC__pefG8bkAxi/s400/Charleston8-12&13&14&15+024.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ye Olde IV Pump.</td></tr>
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Jonathan took Henry to the beach yesterday and they had a big ol' time:<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8NZkRW1wrFy3oh0bPZ-n5Ac3JyJwHcQ2EmXF6NBwU45iGGs7V2Emjy0Vm3DHToPBrTHLj35K48JPkyPCA3UPaj92M3KnzUBeJc18oPXZnCJT-vSQTRzoWU7e7YC80-8NLUfvtFEn8AFan/s1600/Charleston8-12%252613%252614%252615+005.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh8NZkRW1wrFy3oh0bPZ-n5Ac3JyJwHcQ2EmXF6NBwU45iGGs7V2Emjy0Vm3DHToPBrTHLj35K48JPkyPCA3UPaj92M3KnzUBeJc18oPXZnCJT-vSQTRzoWU7e7YC80-8NLUfvtFEn8AFan/s400/Charleston8-12%252613%252614%252615+005.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Surveying his kingdom.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwZjlLsYmsnW6s_S2rB3zEiAToEk8vxdHyUu4ql0t4fSaiEPCAh72zGJJ3wsf7Ck318J7wZ9IQjAei5KMrFBsoezBDLjSG6Dk_ZXEVOTcpsvvTK_8cdRy50DPMIw_2lBQvREMKuEADV8qF/s1600/Charleston8-12%252613%252614%252615+013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwZjlLsYmsnW6s_S2rB3zEiAToEk8vxdHyUu4ql0t4fSaiEPCAh72zGJJ3wsf7Ck318J7wZ9IQjAei5KMrFBsoezBDLjSG6Dk_ZXEVOTcpsvvTK_8cdRy50DPMIw_2lBQvREMKuEADV8qF/s400/Charleston8-12%252613%252614%252615+013.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Playing in the sand.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmz_aPjXFypi9XhbFyPnoSlwzsU5Cb_G0SGtCFNxWcFEky4_KBYIbaBH9o70TsUH6k3r6nzkT-wv2yyFNes3hQ5Vr_TXOEtoZnWolhM7FILnUUcaPQQL1VcAKqzCfwYp64-onro4BWBpig/s1600/Charleston8-12%252613%252614%252615+015.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmz_aPjXFypi9XhbFyPnoSlwzsU5Cb_G0SGtCFNxWcFEky4_KBYIbaBH9o70TsUH6k3r6nzkT-wv2yyFNes3hQ5Vr_TXOEtoZnWolhM7FILnUUcaPQQL1VcAKqzCfwYp64-onro4BWBpig/s400/Charleston8-12%252613%252614%252615+015.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tasting the ocean. Mmmm, sanitary.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVAfZhZKHnHlIV1cycBtC8cu_dqK7jI9dIKPNfOZHyxNlMZ-sAwNvRdNnsEHIs6yi7ladW_E7ftW_41rF0vtQ_3MLCYBiFkGEm7oU4p8bJJDiSMbmm2GY6y4WjoZOduak-femNmCOqN4cp/s1600/Charleston8-12%252613%252614%252615+017.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVAfZhZKHnHlIV1cycBtC8cu_dqK7jI9dIKPNfOZHyxNlMZ-sAwNvRdNnsEHIs6yi7ladW_E7ftW_41rF0vtQ_3MLCYBiFkGEm7oU4p8bJJDiSMbmm2GY6y4WjoZOduak-femNmCOqN4cp/s400/Charleston8-12%252613%252614%252615+017.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Artsy shot with the three Henrys. Real Henry, Shadow Henry, and Reflection Henry.</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com5tag:blogger.com,1999:blog-3033460936977120332.post-18422823780858645602012-08-11T19:30:00.001-04:002012-08-11T19:30:46.907-04:00Cuteness abounds.<div class="separator" style="clear: both; text-align: left;">
Not much to report (still weaning off drugs and learning to eat), but we *do* have some super cute pictures. See?</div>
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<tr><td class="tr-caption" style="text-align: center;">Successfully taking the pacifier (i.e. not gagging on it). Yay!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXt67TkgeKTnVSDZ7Jw6OxBJeg2Yb3xxJu0buC5DRdKZKPnm7ZuaZAUaKxzX0iDhiCHcWDG5zLsuA7V0D7PsWitJZXuJx8HbSvRNe3Oq9Nm1e_EqKJLiEFTG_IroCDmEFMdhYl_P2e3DSG/s1600/Charleston8-9&10&11+013.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXt67TkgeKTnVSDZ7Jw6OxBJeg2Yb3xxJu0buC5DRdKZKPnm7ZuaZAUaKxzX0iDhiCHcWDG5zLsuA7V0D7PsWitJZXuJx8HbSvRNe3Oq9Nm1e_EqKJLiEFTG_IroCDmEFMdhYl_P2e3DSG/s400/Charleston8-9&10&11+013.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy girl.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmoHl3zDcgU_8DoBsLCTzthcI5Pifeq8WADh5dM04TQVEmTGaDjsYom8pbxlsMFMcbrwlUtbeK0faOrL-gIy0HpNvHtYbYOAy7gL2VMX9ylhlnw46ooDIvPTD4vp9jaIrtUmsCu0HJlsYp/s1600/Charleston8-9&10&11+018.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmoHl3zDcgU_8DoBsLCTzthcI5Pifeq8WADh5dM04TQVEmTGaDjsYom8pbxlsMFMcbrwlUtbeK0faOrL-gIy0HpNvHtYbYOAy7gL2VMX9ylhlnw46ooDIvPTD4vp9jaIrtUmsCu0HJlsYp/s400/Charleston8-9&10&11+018.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">98% of the time, Bonnie looks just like Henry and Jonathan. BUT, this picture looks more or less like *my* baby pictures. Win!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Looking homeward.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuyYEtFxn8fQQ2XSUrI_nCwU9Vn8WfnjLHzzt_8fwsUubwwVH2xLJzbxxahfeqC8g3PSulaymQ16S-wfgLKNmAVUwCzME6_HQC5CVOd4GQnx2Tw6zIGr9qrG3-5r0L8eulghHQ1o-BSjoT/s1600/Charleston8-9&10&11+022.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="263" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuyYEtFxn8fQQ2XSUrI_nCwU9Vn8WfnjLHzzt_8fwsUubwwVH2xLJzbxxahfeqC8g3PSulaymQ16S-wfgLKNmAVUwCzME6_HQC5CVOd4GQnx2Tw6zIGr9qrG3-5r0L8eulghHQ1o-BSjoT/s400/Charleston8-9&10&11+022.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Super smiley girl today.</td></tr>
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com3tag:blogger.com,1999:blog-3033460936977120332.post-71494237121997272702012-08-07T21:12:00.000-04:002012-08-07T21:12:52.182-04:00Happy 2 months, Bonnie!<div class="separator" style="clear: both; text-align: left;">
Today is Bonnie's 2 month birthday. Happy birthday, little one! She celebrated by ditching her last remaining IV access. She's had that line in her head for what seems like forever, so it's awesome to now see her sweet little head in its entirety. She wasn't so sure about having it taken out at first, because it involved the removal of a bunch of tape that was stuck to her head (i.e. her hair).</div>
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Still mad, but look! The left side of her head!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDrwIAMovttAO44d8uKuLSYVWG46KK9YEPKWVj9Wu2SCTTvAtsVWP7h_Xx5aL0SijAEWZJkyV-a-3WKUAgNr9D2mq0yLM2EcgJefTKwxVKBdf5iGCB9PBKKiknao26IsSkAkhZvNypFblW/s1600/Charleston8-7+004.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDrwIAMovttAO44d8uKuLSYVWG46KK9YEPKWVj9Wu2SCTTvAtsVWP7h_Xx5aL0SijAEWZJkyV-a-3WKUAgNr9D2mq0yLM2EcgJefTKwxVKBdf5iGCB9PBKKiknao26IsSkAkhZvNypFblW/s400/Charleston8-7+004.JPG" width="400" /></a></div>
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The reason her IV is out is because she is all done with her IV medications, most notably her fentanyl and versed, which she has been working on weaning off of for *weeks*. She is now on scheduled doses of morphine and ativan (which are in the same families as fenanyl and versed, respectively) and will then be weaned off of those. The ativan seems to make her really sleepy, so we've been mostly hanging out with a zonked baby for the past couple days. We did get some cute awake time this afternoon right as we were leaving. Behold!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTT4LMeOc2O_6Bw9h8lSBOGOW47xRWPC5C1OTtLDVzfyyATTfk-d9hFeH7-g025BSir5jfkXISfZoXYPOGJE9GYEMxvg2PilMrhrE-w_f1hREDfQItFJlo53X9_lCMZIBYsYv08m5OxEx4/s1600/Charleston8-7+018.JPG" imageanchor="1"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTT4LMeOc2O_6Bw9h8lSBOGOW47xRWPC5C1OTtLDVzfyyATTfk-d9hFeH7-g025BSir5jfkXISfZoXYPOGJE9GYEMxvg2PilMrhrE-w_f1hREDfQItFJlo53X9_lCMZIBYsYv08m5OxEx4/s320/Charleston8-7+018.JPG" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikGRr57Pt1ZAaEvl9TBNY2R4jUg3ooZCn6gtj5kEmFpQlflUqtPEU7Pd9TWkSXxNl9HnrtWUbCo0hgIVHUROSgwrznJR3h8IVNEysMCf4S3p5XbxpjTskTxv9WlST7vVYNdHRM1LSWEJo7/s1600/Charleston8-7+021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikGRr57Pt1ZAaEvl9TBNY2R4jUg3ooZCn6gtj5kEmFpQlflUqtPEU7Pd9TWkSXxNl9HnrtWUbCo0hgIVHUROSgwrznJR3h8IVNEysMCf4S3p5XbxpjTskTxv9WlST7vVYNdHRM1LSWEJo7/s400/Charleston8-7+021.JPG" width="400" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWOHq5HrwSC8qc9RlWPEQtHr-uSnGZINMDejJLhMkI8rB_LbrlZW4E75wt5TnXJwQpSkGIoTVW3jYJnh65Tj6rKwNG3Ks7ZFk6PbUAJBqwbyv2VRXiOaLISr0sH0ih_H73IHEBmnHqqnlr/s1600/Charleston8-7+020.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWOHq5HrwSC8qc9RlWPEQtHr-uSnGZINMDejJLhMkI8rB_LbrlZW4E75wt5TnXJwQpSkGIoTVW3jYJnh65Tj6rKwNG3Ks7ZFk6PbUAJBqwbyv2VRXiOaLISr0sH0ih_H73IHEBmnHqqnlr/s400/Charleston8-7+020.JPG" width="400" /></a></div>
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If you'd like something specific to pray for with Bonnie, it would be that she catch on with learning to eat. She had a swallow study yesterday which showed she has trouble protecting her airway when swallowing thin liquids (such as breast milk). The plan is to work on feeding her with thickened milk (they'll use rice cereal to thicken it). Today she was so sleepy from her new meds that they couldn't even attempt to get her to bottle feed. The NICU pharmacist (who I love because she's brilliant and also super nice) is working on scheduling her medications so that there's a good window of awake-ness that the speech therapists can use to practice feeding.<br />
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Also, there's a new baby in the NICU that just got put on ECMO yesterday. I talked with her mom a little bit today and she's understandably terrified. Please keep this sweet little girl and her parents in your prayers.<br />
<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com3tag:blogger.com,1999:blog-3033460936977120332.post-13735293869727664802012-08-03T22:55:00.000-04:002012-08-03T22:55:56.658-04:00These days.<div class="separator" style="clear: both; text-align: left;">
Here's what's been happening with our little family over the past few days. First, Bonnie has been working on learning to drink from a bottle. This is always a hurdle for CDH babies, and especially those that have been on ECMO and intubated for prolonged periods of time, because of their oral aversion. The way one of Bonnie's occupational therapists put it, "they have to learn to trust again." As in, they have to learn to trust that not all mouth experiences are terrible. Both her occupational therapist and speech therapist spend a *lot* of time trying to provide positive oral stimulation. Anyway, Bonnie has a pretty strong gag reflex, and her oral/facial muscles are weaker than they should be. She's made good progress over the past few days with learning to suck on (and enjoy) he pacifier, and a couple days ago she took some milk from a bottle. She has continued to take a small amount from a bottle once a day since then, and we are sooo so proud of her. Once she has her swallow study done (hopefully next week), they'll be able to work more aggressively on getting her to take all her feeds by mouth.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCEPMD2HTv1regelR96peRTxZwFaFrvbyd9qGJJ4rZvK0igWmKw-IoYw9k2l-kbZBWt6SSdtA6a64lzeh5soiKMp8ViWtDzGrH_Fn6Phl2nNCCX6Fnb12PElyge1e9MADQKUZR5jgKW8Kz/s1600/CharlestonlateJulythrough8-3+004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="265" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCEPMD2HTv1regelR96peRTxZwFaFrvbyd9qGJJ4rZvK0igWmKw-IoYw9k2l-kbZBWt6SSdtA6a64lzeh5soiKMp8ViWtDzGrH_Fn6Phl2nNCCX6Fnb12PElyge1e9MADQKUZR5jgKW8Kz/s400/CharlestonlateJulythrough8-3+004.JPG" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bonnie working with her speech therapist Heather.</td></tr>
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<br />Meanwhile, back at the ranch, Henry decided he wanted to "go fishin'!". Jonathan was outside practicing his casting, and Henry wanted to join in.<br /><br />
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We took Henry (along with some friends!) to the Charleston Aquarium yesterday. He had a good time running around from exhibit to exhibit. </div>
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<tr><td class="tr-caption" style="text-align: center;">This is a little tube thing in the middle of the lemur exhibit (why are there lemurs in a South Carolina aquarium? Not sure.)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">And here's Henry in a Jeep thing in the Madagascar exhibit. There were a couple fish involved in this expedition, I promise.</td></tr>
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And here are some pictures of Bonnie from today. She had a big day with all her various therapies (speech, occupational, physical). Physical therapy was the last one of the day. When her therapist put her on her belly for some tummy time, Bonnie promptly fell asleep. Right there in the middle of the floor. She'd had almost no sleep last night, so we just left her there. She slept for three (THREE!) hours. I took a million pictures of this event because it was so funny, and she looked so cute.<br />
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<tr><td class="tr-caption" style="text-align: center;">I am a tiny baby in the middle of the floor!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">One awake picture from today. This was taken prior to the amazing nap. See how well she's holding her head up? Thank you PT and OT!<br /><br /><div style="text-align: left;">
<span style="font-size: small; text-align: -webkit-auto;">A few people have asked me if we're planning on transferring Bonnie to the hospital in Greenville (where we live--about 3 hours from where she currently is, in Charleston) while she learns to eat, weans off her drugs, etc. After much discussion with many of her doctors, we (and they) have opted not to transfer. Her surgeon's concern is that she may end up needing a G tube (surgically implanted gadget that goes directly into her stomach from her abdomen). This would only be necessary if she doesn't catch on with the oral feeding, but if she does need it, her surgeon here at MUSC wants to be the one to do the surgery. If she had been transferred to Greenville, she'd have to be transferred back to Charleston for that--too many transfers, huge pain, big mess. We're praying and hoping and believing (and would love it if you would too!) that she catches on quickly to PO (oral) feeding so we won't have to even worry about a G tube. So far she's making good progress. Thanks for praying for our beautiful little girl, y'all.</span></div>
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Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com3tag:blogger.com,1999:blog-3033460936977120332.post-22103324523226741102012-07-29T21:02:00.000-04:002012-07-29T22:51:35.054-04:00Magic Space Pod<div class="separator" style="clear: both; text-align: left;">
Bonnie had a good day today. After a couple days of fussiness and acting like she just didn't feel good (along with high heart rate and respiratory rate), they decided to try tweaking her feedings a bit. They had added a protein supplement to increase calories, but apparently that can be hard on little baby bellies. Today was her first day without it, and she seemed *much* happier. She also got to try out her special chair from outer space. Not really. It's a Mamaroo (<a href="http://www.4moms.com/mamaroo">check it out</a>), and she seems to like it. (This one belongs to the NICU. We also have one of our very own to use at home.)</div>
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She did like it, I promise. This is just her fussing before falling asleep. I included this picture because it's kinda funny and when Henry saw it, he said, "Bonnie mad!" Hehe.</div>
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com3tag:blogger.com,1999:blog-3033460936977120332.post-22084143806403132472012-07-28T00:00:00.000-04:002012-07-28T00:00:32.000-04:00Just checking in.<div class="separator" style="clear: both; text-align: left;">
Still doing well in Bonnie Land. Her medications are still being weaned with minimal problems on her end. Hopefully within the next week or so she'll be off her drips (fentanyl and versed) and can be on scheduled doses. Her occupational therapists are still working on some oral motor exercises to help overcome her oral aversion (due to being intubated for 5 weeks) so that she can eat by mouth eventually. Still on a tiny bit of oxygen. (80% of the sentences in the preceding paragraph contain the word "still". We're in the slow progress phase of our journey.)</div>
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Her heartrate has been a touch on the high side for the past few days with no other obvious issues. The only thing it seems to correlate with is temperature--when she gets too warm, it goes up. They checked her hematocrit and it was good (36), so that wasn't the problem. No signs of infection or anything, so nobody's too concerned.</div>
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Her cry is definitely getting stronger these past few days. It's probably at 75% of normal baby volume. Way to go, Bonnie!</div>
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This week Jonathan's folks have been keeping Henry while we're at the hospital, but of course they got some snuggle time with Bonnie as well.</div>
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<tr><td class="tr-caption" style="text-align: center;">Bonnie and Buddy (Jonathan's dad).</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Smiles for Buddy.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Snuggling with Nan (Jonathan's stepmom).</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Pretty girl.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Smiling at her friends (i.e. the mobile).</td></tr>
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<br /></div>Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com2tag:blogger.com,1999:blog-3033460936977120332.post-28751308782357711782012-07-24T19:41:00.000-04:002012-07-24T19:41:35.482-04:00Sweet girl.Sweet. Not salty. Bonnie passed her sweat test with flying colors. No cystic fibrosis. I can't even tell you what a relief that is. Praise God, and thank you all for your prayers over the past few days. And *that*, friends, is the end of this ridiculous little chapter of Bonnie's CDH adventures.<br />
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On to better things! Bonnie had a big ol' time this morning with her occupational therapist. She's learning to hold her head up a little! <br />
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We also had our daily dose of snuggle time.<br />
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<br />Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com9tag:blogger.com,1999:blog-3033460936977120332.post-77643605175687785532012-07-23T21:36:00.000-04:002012-07-23T21:36:44.198-04:00Mmm, tasty baby.Not a lot happening with Bonnie since my last post, medically speaking. She's still on a very low amount of oxygen (0.1 liters of flow and 30% O2) and is doing great with that. She's getting 20 cc/hour of breastmilk, and today they (the speech therapists) attempted to get her to bottle feed a little bit. <div>
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The whole eating thing is complicated. We found out <a href="http://babybeehelms.blogspot.com/2012/07/nicu-fashion.html">a few days ago</a> that Bonnie's right vocal cord is paralyzed. This is probably due to some combination of being on ECMO and being intubated for so long. The vocal cords (or vocal *folds* as they say in the biz) help close off your airway when you swallow so that you don't aspirate. Inhaling food (or breastmilk) into your lungs is clearly not an ideal situation, so we have to be super careful when feeding Bonnie by mouth. So careful, in fact, that they don't really want to do it until she's had a swallow study and can prove that she can protect her airway. The swallow study requires that she be able to swallow (imagine that), which, until today, she had never in her life had to do. The speech therapist came today to give her some practice sucking and swallowing. Short version is that she's not quite ready to eat by mouth yet. She didn't throw up or anything, but she was sort of gaggy (common in CDH babies) and not very interested in sucking. After about ten minutes of trying (during which she consumed a whopping one milliliter of milk), she promptly conked out. Oh well, gotta start somewhere.</div>
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So we won't be having a swallow study for at least a few more days. What I'm hoping is that by the time she's ready for it, she won't need it anymore. Her cry has been significantly louder the past day or so, which I'm hoping is a sign that her vocal cord is coming back to life.</div>
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The big event tomorrow is her sweat test to check for cystic fibrosis. I've been assured several times that no one thinks she has it, we just have to do the test to rule it out since her newborn screen <a href="http://babybeehelms.blogspot.com/2012/07/now-what.html">came back positive</a> (twice) for a CF marker. The test measures the amount of chloride in a person's sweat, and if it's higher than a certain number, it indicates they have CF. One little tidbit that I vaguely remembered from nursing school and was then reminded of by one of Bonnie's nurse practitioners, is that if you kiss a baby with cystic fibrosis, they tend to taste salty. She said that's *almost* as diagnostic as the sweat test. So it should come as no surprise to anyone that I've licked my child about five times over the past couple days. She doesn't taste particularly salty to me, so I'm taking that as a sign that all is well. Nevertheless, please pray for a couple things tomorrow. 1--That she is able to have a successful sweat test. A lot of times it's hard for itty bitties to sweat enough for a valid test. 2--That she, for the love of pete, does not have cystic fibrosis.</div>
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And now, some pictures!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidXvGjrYumQyxeRZC16QsiussaGKQEAr_FXzH1_cjoToILh7k3dJ92DiiLK0_0mXBRHL1JYhG7b6Aq5P7raxVwdW6tvMq3xtemPqhxl1Bytg5y3eMbENCcPGYX31EU729LWORuLY8_F7Ca/s1600/Charleston7-21&22&23+002.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidXvGjrYumQyxeRZC16QsiussaGKQEAr_FXzH1_cjoToILh7k3dJ92DiiLK0_0mXBRHL1JYhG7b6Aq5P7raxVwdW6tvMq3xtemPqhxl1Bytg5y3eMbENCcPGYX31EU729LWORuLY8_F7Ca/s320/Charleston7-21&22&23+002.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pop Pop (aka my dad) got to hold Bonnie a couple days ago.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifk_so6CN3yISX3mpZDObMSbfwDQXaLKQm19gSHnyYbs84vJLPanzrBFyypXjw4UkyWz59mwY7MCXuBOTziAVmaGRdVZ5xYFtGAaluv76WYuxSNTPAbI1yO3KEN_FOaMl5Nvh0yAnoBbhu/s1600/Charleston7-21&22&23+003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifk_so6CN3yISX3mpZDObMSbfwDQXaLKQm19gSHnyYbs84vJLPanzrBFyypXjw4UkyWz59mwY7MCXuBOTziAVmaGRdVZ5xYFtGAaluv76WYuxSNTPAbI1yO3KEN_FOaMl5Nvh0yAnoBbhu/s320/Charleston7-21&22&23+003.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lots of pink.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk6Fltrg3QZhEHZh3MuXqcJ5C-CynIp4Rap7kE1-pjgI3rbgcyFdxVyzDP5eLDkec-M3Fvdsi4o4NYdRzaYAhCUxEVez59ZajqBEypHOkI7mN2zw-jXgqrvrMC1B0ga5bfk6nOhdiMe-H2/s1600/Charleston7-21&22&23+014.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk6Fltrg3QZhEHZh3MuXqcJ5C-CynIp4Rap7kE1-pjgI3rbgcyFdxVyzDP5eLDkec-M3Fvdsi4o4NYdRzaYAhCUxEVez59ZajqBEypHOkI7mN2zw-jXgqrvrMC1B0ga5bfk6nOhdiMe-H2/s320/Charleston7-21&22&23+014.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet sleepy girl.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfhjPEv8UKGKIRdv2QaGXKAwVIfluIUWdrIIor_IKppIkX6ycJ9ZmAA71oZXQIUWuWz0vxW2CaG6ed_CCdOny42lQTHSuWi5mlwf1MPLeKluEVyX5WWpGs0-CQD3xwg3C5r21TwohJZ7Pq/s1600/Charleston7-21&22&23+017.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfhjPEv8UKGKIRdv2QaGXKAwVIfluIUWdrIIor_IKppIkX6ycJ9ZmAA71oZXQIUWuWz0vxW2CaG6ed_CCdOny42lQTHSuWi5mlwf1MPLeKluEVyX5WWpGs0-CQD3xwg3C5r21TwohJZ7Pq/s320/Charleston7-21&22&23+017.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An artsy shot.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie0S-VMA6HsQNL3sPSSNktLTPBJegN8XdLc97v9LOYfQ_Gi87maZl-eXpYDoruNjan8ooLJ1UXVu-AAxrKv-TGXavToJPMQcj4Ln0Ocd_wSUBag7T7-J26rMLICDEFFzUSh0LSzbJvHp1t/s1600/Charleston7-21&22&23+024.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEie0S-VMA6HsQNL3sPSSNktLTPBJegN8XdLc97v9LOYfQ_Gi87maZl-eXpYDoruNjan8ooLJ1UXVu-AAxrKv-TGXavToJPMQcj4Ln0Ocd_wSUBag7T7-J26rMLICDEFFzUSh0LSzbJvHp1t/s320/Charleston7-21&22&23+024.JPG" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In 20 years, we will be able to tell that this is Bonnie and not Henry only because she has all this stuff on her face.</td></tr>
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<br /></div>Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com6tag:blogger.com,1999:blog-3033460936977120332.post-70866765110120971282012-07-20T21:47:00.000-04:002012-07-20T21:47:12.805-04:00*Now* what?!Bonnie is still doing well, y'all, but now we've got something completely out of left field to worry about. Her initial newborn metabolic screen (which they do on all babies--tests for a variety of diseases) came back abnormal. I knew about that one because they had mentioned it in passing one day in rounds. Didn't think much about it because there are a billion obscure diseases that can show up, and nobody seemed worried about it at the time. I didn't even ask which test came back abnormal. Well. Anytime a metabolic screen turns up something, they send a second one to confirm the results. Bonnie's second test was sent about a week and a half ago. <div>
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We found out today that this one was abnormal too. It came back positive--for the second time--for the marker for cystic fibrosis. All I'm going to say right now about cystic fibrosis is that it's a really scary disease. In the grand scheme of things, I'm probably more freaked out by the possibility of CF than I was with the diaphragmatic hernia. Maybe that's crazy. Whatever. *Anyway*, Bonnie had an elevated marker for CF, (which is called IRT--immunoreactive trypsinogen). This doesn't mean that she has the disease, only that more testing is needed to definitively rule it in or out. Various folks have assured me that it's quite likely she doesn't have it (no symptoms, for one thing), and that there are a variety of things that can cause an elevated IRT. One of the main ones is stress, the type that might occur when you are a brand new baby with a diaphragmatic hernia.</div>
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Sooo Bonnie will be tested for cystic fibrosis. The initial test will be a sweat test, and if that's inconclusive they'll do some genetics labwork. The sweat test involves some kind of complicated procedure, and there's only one person in the hospital who can do it, and they only do it on Tuesdays. Today is Friday, so we get to wait four days for any sort of information. </div>
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We would really *really* appreciate your prayers that Bonnie doesn't have cystic fibrosis. By the grace of God, she's made it through the scary phase of her CDH. Not sure we can handle another life-threatening diagnosis.</div>
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Here are some fun pictures to cheer us all up:</div>
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And then we have Bonnie and Jonathan. I was out of the room when these were taken (pumping, of course), and I'm so sad that I missed out on this smile-fest! So glad our nurse was able to capture it on film, though.</div>
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<br /></div>Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com3tag:blogger.com,1999:blog-3033460936977120332.post-17470722430370284642012-07-19T21:45:00.001-04:002012-07-19T21:45:37.986-04:00NICU fashion.<div class="separator" style="clear: both; text-align: left;">
<span style="text-align: -webkit-auto;">The big Thursday event this week is that Bonnie got to wear clothes for the first time today! We came in to see Bonnie today and found that her lovely nurse Meghan had done this:</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEyEpvXVFfkG846kgFUng8uZ9CbuNA-rBvRC_NTko8o4vtDSk9nWU7T9EJ9pBH45u3b0Z_uMI6eSq4zxFTjklecn13PLjyk0LpvZ5MR4LTIMlE1NWJrlngkT6oWpG02RioWALGYZwSeW5m/s1600/Charleston7-18&19+003.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhEyEpvXVFfkG846kgFUng8uZ9CbuNA-rBvRC_NTko8o4vtDSk9nWU7T9EJ9pBH45u3b0Z_uMI6eSq4zxFTjklecn13PLjyk0LpvZ5MR4LTIMlE1NWJrlngkT6oWpG02RioWALGYZwSeW5m/s320/Charleston7-18&19+003.JPG" width="320" /></a></div>
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Isn't she cute?!</div>
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The update from the ENT evaluation is that she has a paralyzed right vocal cord. This should resolve eventually, but it could take several months. Her cry is getting a little stronger but it's still really soft.</div>
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She's back to continuous feeds through her NG tube (20 cc/hour). She had been getting 45ish ccs over an hour and then off for two hours. She had some throwing up last night, so they backed off to the continuous feeds.</div>
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Bonnie started getting a little puffy last night (nowhere near as bad as when she was on ECMO), so she got a dose of Lasix to help depuff, which helped. They decided to give her Lasix daily to help with her tendency to puff.</div>
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We're still enjoying the heck out of snuggling with our girl. She's a cuddly bundle of squishiness that I can't get enough of.</div>
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Hard to believe that just a month ago we were here:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvg4uxzz6luhGYkw1CKPJogsEovC6rrXTQC4RDrOG05TQA0y5-aIG3JnM6N-yYWlBDdQPcLSo3Hy3VQrshYl2G5_bC5O48SwRHEXxb2ZpYpfk5ZkDGnBhNtBi9-3ASr4jGshjqwTR2UFjb/s1600/Charleston+075.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvg4uxzz6luhGYkw1CKPJogsEovC6rrXTQC4RDrOG05TQA0y5-aIG3JnM6N-yYWlBDdQPcLSo3Hy3VQrshYl2G5_bC5O48SwRHEXxb2ZpYpfk5ZkDGnBhNtBi9-3ASr4jGshjqwTR2UFjb/s320/Charleston+075.JPG" width="320" /></a></div>
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So many praises to the One who has gotten us through.</div>
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<br /></div>Anonymoushttp://www.blogger.com/profile/17342433042043500946noreply@blogger.com6