Monday, July 23, 2012

Mmm, 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.  

The whole eating thing is complicated.  We found out a few days ago 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.

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.

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 came back positive  (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.

And now, some pictures!

Pop Pop (aka my dad) got to hold Bonnie a couple days ago.

Lots of pink.

Sweet sleepy girl.

An artsy shot.

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.


  1. So glad I signed on to check on sweet Bonnie before bedtime. Now I will say specific prayers for our irongirl as I go to sleep. will be thinking of you throughout the day tomorrow as you endure a few more hurdles that noone should have to face but that you are facing with strength and faith. You amaze and inspire me, my friend. And I can NOT get over how much Bonnie looks like Henry - unreal!!

  2. That last pic is sooo Henry. Prayers for good results tomorrow!

  3. Bonnie is beautiful. I love her! God bless you. Praying for a good report and continued healing. Xoxoxo

  4. She is so beautiful! I have been praying for all of you and I am so pleased she is doing so much better. I had to smile at your post today when I read the part about licking your baby- I am so happy you have been able to still find some humor in all that you have been thru. Evidence that you are being held in the cleft of the rock- Praise to God for sustaining you there and guiding you thru this trial in your life. Continued prayers for your precious girl, you and your family.

  5. Sending lot of positive thoughts your way and hoping CF tests come back false.