Thursday, May 15, 2014

A memorable Easter

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.

Friday, April 18th: 
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. 
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. 
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.
She slept okay-ish through the night, but would cry and whimper occasionally. 

Saturday, April 19th:
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.
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.
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.
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.

Sweet girl getting fluids in the ER

Sunday, April 20th:
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.
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.
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.
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.)

Not doing well.
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.
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*.
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.
When we got to see her in PICU, it was about 11 p.m., and she looked like this:

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.

Monday, April 21st:
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.

Tuesday, April 22nd:
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:

A couple hours after the above picture was taken, our amazing child decided she wanted to go for a walk:

And check out the aquarium:

Later that afternoon she got moved from PICU to the pediatric surgery floor, and big brother Henry came to visit:

Unfortunately, she didn't sleep very much that night. Like maybe 3 hours.

Wednesday, April 23rd:
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.

Thursday, April 24th:
Woke up to this precious face.

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.

Okay, seriously? How cute is she??

Friday, April 25th:
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.

From then til now:
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.

Some more thoughts:
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.

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.

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.

****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.****

Sunday, February 2, 2014

Another February 2nd

February 2nd has been an important day to me for two years now.  It's the day in 2012 that Bonnie was diagnosed with CDH, when she looked something like this:

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. 

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.  

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.

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.

Here are a few more recent photos.

Henry was in time out for some infraction against Bonnie.  She came over to visit.

Helping out with the Christmas lights.

Bonnie and Zander.

Mama and Bonnie.

Furious baby.

Happy baby with a book!

Doing some reading.
Hard to tell with a still shot, but she's dancing here.

So, happy February 2nd, everybody!  We have lots to be thankful for.

Tuesday, October 8, 2013

16 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!
Bonnie hearts you.

Poor Zander had to wear a cone for awhile.  He was further tormented by the baby.

Enjoying a nice breeze. Or trying to fly.

Unlocked the cage all by herself, climbed in, and had a chat with the dog.

Playing in the water!

This moment *right here* is when Bonnie caught on to the whole food thing.  She's munching on bacon at Cracker Barrel.

Bacon day.

Sweetness with Dado.

Eating crackers!

Eating Cheerios!

She was having trouble getting around on her little trike, so big brother helped.

And these are from today. She was helping me unload the dishwasher...and eating :)

Thursday, June 6, 2013

To my baby...

To my baby, on the eve of her first birthday.

Dear Bonnie,

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.

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.

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.

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.

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!

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.

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.

All my love,

P.S. Here are some pictures from your last bath as an 11 month old :)

Wednesday, April 24, 2013

Long time no see.

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.

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.  

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.

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.

And now I've got four million pictures to share.  These are roughly in chronological order, starting from a couple months ago.  Enjoy :)

Curls!  This was right after a bath, so her hair is extra curly.

Curls from the back.

My cute chubby baby at the zoo.

My sweet Henry riding a bear.  Yeehaw.

Henry and Bonnie

Bonnie Bee. <ba-dum-ching>

Henry giving Bonnie some love.

Bonnie not feeling it.

Bonnie and Jonathan.  This one just makes me smile :)

Can't have dinner without wearing your hand-knit monkey hat.

Just because he's beautiful.

Henry reading to Bonnie. Love this.

Happy girl!

Bonnie looooves her puppy Zander.  More photographic evidence to follow.

Bonnie with a bow!

Bonnie and Grandmama in Tennessee


Yet more hallelujah's.

Hanging out in the exersaucer while Dado cleans out the garage.

Two kids in a tiny chair.

See? Loves the dog.

Poke poke.  (Don't worry folks, he's the world's sweetest dog.)

Check it out!

More Zander love.

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.