Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

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Monday, August 16, 2010

Suck, Swallow, Breathe

This is Thomas writing.

It seems we've been getting so much good news at the hospital lately. And for whatever wonderful reason, the good news just doesn't seem to want to end. So when would baby Whitney be able to come home with mom and dad? I knew it was one of those questions that I know nobody can give a definitive answer to, but I decided to ask the doctor anyway to see if he would even try and guesstimate. So we spoke with the doctor, who of course said, "it depends". He said that Whitney is on very little support right now, she's mostly breathing on her own now, but with a high flow nasal cannula. So they need to wean her down on the high flow down to a normal flow. They anticipated that this would maybe take a week, maybe longer, but probably shorter than that.

The doc says that right now her tube feedings are being delivered to her stomach over a duration of an hour, and they need to shorten that to half an hour. Because it's being delivered over an hour, there is a continuous slow flow of food going into the stomach and coming out of the stomach (to the intestines). Because of this slow flow, nothing really accumulates in her stomach for too long. In real life, we eat food in half an hour or less, it sits in our stomachs to be digested before moving into the intestines. When they first tried to deliver the feedings over a half hour, Whitney couldn't hold it in her stomach and threw it up. But that was a while ago, they are going to be trying it again soon to see if she's improved.

Finally, they want to transition Whitney from tube feeding to nipple/bottle feedings. They attempted this for the first time last night. Using just 5 mL of milk (a very small amount), they wanted to see if Whitney would be able to do it. The doctor says that the trouble most of these babies have with oral feeding is the coordination of sucking, then swallowing, and then breathing. He says that a normal baby breathes at about 40-55 breaths per minute, and Whitney breathes at 65 breathes per minute. She needs to breathe a little faster because she has a smaller right lung. However, the faster breathing sometimes, with some babies, makes it more difficult for the baby to learn how to suck, swallow, and breathe in a rhythmic pattern. The good news is that Whitney didn't seem to encounter any problems with this oral feeding pattern for those 5 mL of milk. I've got high hopes that Whitney will pull another miracle recovery act on us again when she shows us she'll have no problem with oral feedings. Time will tell though.

So that's pretty much it, got off the high flow nasal cannula, reduce the feeding times, and learn how to oral feed. Then come home! They said that she can be on a regular flow nasal cannula and come home, but they doubt that she'll even need that. They can't say how long this will take, and that Whitney will set the pace, but if Whitney continues this rapid rate of recovery, it won't be too long from now. As parents, we're very excited!

This week we're going to hunt down a good Pediatrician, one who has dealt with CDH babies before. We have a list of names of Pediatricians that the hospital coordinator says that they prefer and work very well with, so we'll check them out.

Whitney is now able to wear clothes! The hospital provides "Straight Jacket" like clothing, which is cute... but not as cute as some of the clothes we have at home and some of the clothes Whitney got from the baby shower. So we're going to bring in her own clothes during our next visits and see how they look on Whitney. Photos are surely to follow soon.


  1. Whitney is so cute, beautiful! She is doing so wonderful!! Learning to eat is the most frustrating aspect of the NICU, especially when you see home in the distance. Don't give up or discouraged. Praying she learns to eat with success and has no major issues with reflux. Stay strong baby girl and keep amazing those doctors with your strength!!

    Tracy, Ian's mom from CHERUBS

  2. These pictures are oh so cute! To be honest I would be very careful about taking your own cute clothes. Sometimes the nurses just aren't paying attention because they are busy and they end up in the laundry and then who knows if you'll get it back. (And that's even with their name written in it!) We lost a blanket (which was eventually recovered) and a cute preemie layette type outfit I bought Sharon. Some baby is wearing a cute outfit that has Wilhelm emblazoned on the neckline.

  3. Wow, how cute is she?!!? I am so glad to hear all the good news, and I hope it keeps coming and coming for a long time to come! You two must be getting excited to have her home!

  4. She is just adorable, I love those long fingers. What an amazing recovery she has made and continues on a daily basis. I'm so excited for your little family and how things have turned out what a strong cute little girl you have. Much love!

  5. Whiiiiiiiitneeeeeeeey~!! Auntie loves you so very much~! <3<3<3

    What an amazing recovery she's been having! We're all so very blessed to have this miracle. My heart gets so warm and then just melts at each bit of good news that comes our way. And you're right, Thomas, it seems that it's just one good thing after another! A pattern that I hope won't give out! I'd absolutely love to see her in some of the outfits she's received, and I know she got so many (and some were even repeats, I think)! I'm so excited!!!

  6. Congrats on all the wonderful, miraculous progress! I'm really glad to hear she got the suck/swallow/breathe all right; when I saw the title of your post I worried that maybe she was having trouble. Our youngest had issues with that and it was always interesting trying to get her to just get her 30 mLs down! I absolutely love reading about all of your sweet girl's progress. It's just heart warming and it's just fantastic to see a miracle in progress.