Kayla was born with Left-sided Congenital Diaphragmatic Hernia (LCDH). When she was born she was in the NICU for a total of 55 days. She reherniated two years later, had her repair surgery in May 2011 and spent 11 days in hospital recovering. She is a tough little girl and we are truly blessed to have her here.
My husband is an obsessed Yankee fan (if you couldn't tell by all of Kayla's Yankee gear) and watches the Yankees EVERY night!! I am not a fan of baseball season as there is a game on EVERY night except maybe once the whole week! So as my husband watches the Yankee game and Kayla is down for the night I don't have much to do. So I come out to the computer room and blog stalk! I read blogs of CDH babies and their families that I follow every day and then I click on one of their links to a new CDH blog and begin reading their journey-
Now this wouldn't be bad but all I do is cry! It's very frustrating to me that this happens so much yet they call it very rare!
So I guess I'm posting tonight because I feel awful! Kayla had, compared to other CDH babies, a fairly easy journey. I mean she was intubated for 26 days- two different vents, one chest tube, two surgeries and one day on vapo therm. Kayla's biggest feat was overcoming her fentanyl addiction. (of course after repair) But as I sat here and read some new blogs (to me anyway) and found out that a couple moms showed up to deliver and had no clue what was wrong with their baby. I couldn't imagine going into this and NOT knowing her situation. If this had to happen, I'm glad I found out 18wks gestation! Also, as I was reading, I saw many complications! ECMO for over 30 days, pnemonia (sp?), infections, on and off intubation, feeding tubes, going home with oxygen, going home w/o your baby!!!!
The one thing that I can guarantee in life, that everyone will agree, is that a parent should never know the feeling of the death of a child. It's not fair and it's not right!
So I guess I would just like to thank my lucky stars that Kayla had a decent ride through the NICU. She had two scares of an infection- which both turned out to be nothing, thank god! She was never re-intubated, slowly ate from the nipple every time, and didn't need ECMO- I truly did not know how lucky I was/am.
The CDH monster is a tough monster and it strikes every baby differently. I have read MANY CDH blogs and have not heard the same journey once.
I am very lucky to have Kayla home and well. She currently is struggling with reflux which makes her not eat so much, but I'm working on it- formula changes and what not- but as I sit here and think of how frustrated I get when I feed her and she doesn't take what I THINK she should take- I realize I need to stop worrying- let everything fall into place and live. I need to stop worrying about her reherniating, eating and breathing- it just seems all i do is worry. But after tonight- reading those blogs- I need to cherish what I have and whatever happens, happens. As far as I can tell- thanks to all the blogs that people post- is deal with it when (if) it happens and you will get through it, baby and all.
I do apologize for going ON and ON... but I'm just so angry with what CDH does to a baby. Even my time at the NICU- my husband and I saw babies struggling for various reasons that I never thought about before. The 9th floor of Course Hospital in Syracuse is a whole different world. It's a sad world, but a loving, caring and life-saving world!!! It takes a special person to do what those drs, nurses and surgeons do! I thank them all and all you CDH bloggers and Kayla Blogger followers as you help me get through day to day.