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.
- 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!
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.
- 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.)
- 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.
- 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.
- 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.
And here are a few more pictures from Christmas.
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 :)
- Assorted cuteness.
- 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.
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.
*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. :)
so glad bonnie is growing and healthy. i was wondering how she was doing since you havent posted anything in a long time.
ReplyDeleteAwesome news! I have been following and praying for you all through Jude's blog. She is a beauty and blessed to be in such a loving family.
ReplyDeleteYes, so happy to hear about Bonnie's progress. Keep us posted! I came through Jude, too.
ReplyDeleteLeslie....
ReplyDeleteI just discovered your Blog. I, too was born with a diaphragmatic hernia, among other birth defects. I am now 29 years old. I love, love, love to write!! And, I enjoy singing. It sets my soul free somehow. People say that I am good.... ;)
Bonnie is beautiful!! No, wait. As my phrase goes, she is Beautifully Unique!! ;-D
I will be praying for Bonnie's continued good health!! ;)
By the way? I am not speaking for a doctor of course, but I've visited several Blogs lately who had children born with CDH. Bonnie is--thus far!!--the chubbiest one!! And that's good. ;)
Keep posting. I want to watch Bonnie grow up!! ;-D
"I (we) shouldn't be alive... unless it were for a reason." ~Tony Stark
--Raelyn