Bursting at the Seams

Goggle Free!

{Hughie on his first day of life wearing his "sun-tan" goggles, catching some zzz's}

Today I am grateful that Hughie doesn't need the bili lights anymore...no more goggles covering his eyes 24/7. Today I was able to get a good peek at one of his eyes, as he seemed to be staring right into mine. He still struggles to open both of his eyes, because of all the swelling...but from what I could tell today, he has some beautiful blue eyes.

Overall, he had a good day today...remained stable on all his support. His sweet nurse encouraged me to buy him some flavored chapstick to put on his lips, she has learned from experience that some babies really like the smell and taste. It gave me satisfaction to be able to get him his very own cherry chapstick and apply it to his little lips. This experience with my Hughie has really opened my eyes to the importance of my own profession. Hughie's wonderful nurses have made all the difference in helping us cope with Hughie's condition. Overall, they have been so wonderful and attentive to his needs. This has given me much peace when I leave him each day, and has allowed me to get rest at night without having to worry about him not being cared for properly. I hope this experience will make me a better nurse to my patients and their families.

We had a little care conference today with Dr. Carey (the geneticist), Dr. Yost (the neonatologist) to discuss Dr. Carey's findings and where to go from here with Hughie's care. I have been on pins and needles waiting to see what Dr. Carey had to say. Well....the genetic tests came back negative, so just as the amniocentesis showed, Hughie has all his chromosomes intact and no major gene deletions that are detectable. Initially, I wasn't sure if this was good or bad news because it doesn't give us an answer as to why Hughie has the anomalies that he does. They are going to send for one more test that is more specific of a family of syndromes, which will take another week to come back. So, it would appear that Hughie has a unique syndrome all his own, that Dr. Carey really has never seen. Given Hughie's series of abnormalities, Dr. Carey can't give him a concrete diagnosis. Hughie is just his own little person. Hugh and I were discussing how Hughie has been good at getting us all riled up, and in the end no real answers have come. It happened with the amniocentesis and now again with the micro array (his most recent genetic test). He is keeping us on our toes, which makes Hugh and I chuckle at the seemingly little personality our Hughie already seems to have :). So, for now we will forge ahead and keep praying that Hughie will turn a corner real soon. We were hoping that Dr. Carey's findings would shed some light on why Hughie has been so sick, but with no concrete diagnosis it his hard to correlate his current condition with a syndrome. Dr. Yost feels overall Hughie isn't getting better at this point, maybe a little worse. But he does feel it is appropriate to give Hughie some more time to see if his little body can heal and start to recover. He continues to leak fluid into his tissues, causing more edema and puffiness. His lungs seem to be a little smaller than normal which may be putting him at a bit of a disadvantage. His little heart still needs support from continuous drip medications to function properly. He has a long way to go...but I am hopeful he can do it. Our little Hughie is full of surprises, we will have to wait and see what he has up his sleeve.