Health wise he is trucking right along. He is growing well, which is the best thing for him. As much as I hate, hate, hate the NG tube, I know it is a necessary evil. He needs to grow for his omphalocele to keep shrinking, and he needs to grow so his left lung can heal to get him off oxygen. His omphalocele is literally 1/3 of the size it was at birth and it is almost covered in skin! Sometimes you wouldn't even know he has one when he is wearing certain clothes! We are doing compression with an Ace bandage and his surgeon is so happy with the progress his omphalocele has made. The plan is to do surgery in 6 to 9 months, so somewhere between December 2013 and March 2014. Part of me can't wait, but another part of me is pretty nervous. I have moments where I look back on Gavin being intubated when he had rhinovirus and I get a little overwhelmed remembering what it was like to see him cry and try to communicate with us with a tube in his mouth. It was just awful. I know he will likely be intubated again for surgery and I just start to feel sad all over again. Granted, his surgeon wants to wait until Gavin is 9 to 12 months old in hopes that we avoid intubation. But I know it is a possibility.
Life is a little hectic with an O baby at this stage! Everything takes a little longer than it does with a non-O baby. Plus Gavin is still on oxygen and a breathing tube, so getting around is difficult! Especially when you are 5'3" and trying to get him out of an SUV in pouring down rain while holding his oxygen tank, feeding bag, and diaper bag. I have perpetual bruises on my arms from this! Also Gavin battles some reflux which isn't so fun. Some days are good days and other days aren't. It isn't fun to watch. The hope is that he starts to outgrow it in a couple of months and that we will also be done with compression soon, which is likely aggravating the reflux.
While life is hectic, we wouldn't change it for the world! We do have days where we talk about how nice it will be a year from now, but we enjoy watching Gavin develop and the miracle that his little life is. He is such a smart and curious little guy. We recently started working with a well known feeding therapist and she was so impressed with how smart he was. Although he is a little too smart and has stopped eating orally because he realizes that it can cause him to reflux! Hence working with a feeding therapist! But he is a ton of fun and we are looking forward to continuing to watch him grow!
We are also celebrating his O buddy Hayden's successful closure surgery yesterday! Hayden has some great parents, and his grandparents have kind of adopted Gavin! They send him adorable outfits every now and then. And they know exactly what outfits work best on an O baby, so they get a lot of use! This whole experience has really shown our family the importance of a small gesture. Hayden's family brightens our days by thinking about us!
Well, stay tuned for more updates and adorable photos! Now that we are getting the swing of being new parents I am hoping to update this blog more often!!!
