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.
So I made my every morning call this morning and was highly disappointed again! Every day seems to bring Kayla a new nurse- she is to the point- especially being weened of fentanyl- that she needs some familiar faces, some faces who know how Kayla acts and how Kayla eats.. Well my nurse this A.M. - I don't know who she is - I have heard the name- and am thinking she had Kayla once- when Kayla was not taken off her fentanyl. Anyway this nurse proceeds to tell me that Kayla did not have a good night. (First time I have been told this in a long time) The reason she did not have a good night was because she slept all night long, except when she was woken up at 4 a.m. to do her every three hour feeding and she did not want to be awake. So Kayla threw a fit and vomited out all her feeding. This is what is so frustrating to me- a normal baby sleeping thru the night would thrill everyone- but if my baby does- it's not good... hmmm!!!!!
A nurse practioner did say that if Kayla was asleep do not wake her in the night - if she wakes up- feed her. That sounds like a plan to me- but we'll see if they really do it.
On a more positive note- Kayla was reduced to half of what it was on her fentanyl... It was .6 so I'm thinking half of that will be .3- but before it was a 2 and half of that was .6....??? I'm not real good at understanding this fentanyl stuff- :) But this is a good thing- she needs to get off her drugs- she can't go home with a fentanyl drip! But I am very nervous with this weening- she is pretty grumpy and makes her feedings not go as well as they can. She is also up to 42 mL of formula.
My husband and I continue to pray for Baby Kaden everyday- as well as all the other CDH babies out there- we are trying our hardest to get the word out there about CDH- for awareness day my co-worker (I love her) put an article in two newspapers- however I am from a SMALL area- but it is all worth it! :)
Kayla does miss the company of Baby C and his parents tho!!