Blessings

There's so much more to beware of with a cdh child than we ever imagined. My brain in on overload. Not only is it possible for their repair to re-herniate but cdh kids are known to have hearing loss and vision loss. With Liam having been on ecmo it makes chances of hearing and vision loss go up. Its somthing that is progressive so even though his hearing and eye sight are perfect now doesn't mean he wont have the loss later in life. If he catches a cold or virus it could land him back in the hospital. He'll have respitory issues for the rest of his life. I just talked to one of his doctors here at UCSF and the results of his MRI came back. Liam does have a bright spot. It could be healing or it could be something that will affect his motor skills and cognitive skills. There just doesn't seem to be one thing I can just not worry about. It's going to be a hard, challenging, long road ahead of us. It's a good thing we have God on our side. I'm dealing with all the stress of being here for 6 weeks. Of feeling lost and having everything thrown at me. It's a very overwhelming situation to have a high risk infant. This whole thing has given me post tramatic stress syndrom. The one thing I know with all my heart and soul is that if I had been given the choice of not having Liam at all or go through what we've gone through with him I would without a doubt choose to do everything exactly the same. I love my little Cherub. The awesome news is Liam has been off nasal canula since yesterday and we get to take him tome tomarrow. I have cried countless times. After 6 weeks of being here I am more than ready to be going home and to have my family truely together. It's a miracle that Liam has over come so much in such a short time. Most cdh kids are in more a minimum of 6 months. God has blessed us in so many ways. Now I know why they call cdh kids cherubs, they are gifts from God. Little angels.

36 hours straight :)

We walked our 3 miles to UCSF from the Ronald McDonald House this morning to see Liam. I felt fine when we left. We took a detour so Lanie could show me the carosel at the Golden Gate Park and we rode it once. She loves it, which is funny because we have never been able to get her to ride on anything that moves. We got to the hospital just in time for Liam's 12pm feeding. I changed his diaper, fed him and held him for awhile. Thats when I started feeling really bad. My back started hurting, my knee was throbbing and I started having sharp pains in my legs. I thought if i ate I would feel better so we went to the cafeteria. I didn't feel any better and thought it best to leave so I could rest. So we walked our 3 miles back to the house. I was in absolute pain, could hardly walk by the time we got back. After a nap I called to check on Liam. He's still taking all his full feeds by bottle and doing great. They also moved him yet again, back to the west wing to bay 1 this time. When I asked why they told me it was for staffing purposes. Because Liam has to be fed every 3 hours by bottle the nurse cant divide her attention. In the north where he just left the nurse's attention was divided for 3 babies, all of which have the same feeding time. Now his nurse's can concentrate on him and we get to see alot of his same nurse's he had before. I think it's a good thing since before they orders were written that he was to take every feed via bottle and not to put in a ngtube, the night nurse's didn't bother to wake him to feed him like they were supposed too. He's gone 36 hours now bottle feeding. Thats amazing considering he's only been doing it a week now. He has no eating issues and is still gaining weight. They didn't lower the liters of his nasal canula today because they didn't want to rock the boat since he only started all feeds via bottle yesterday. I'm sure he will continue to do good and will be home before we know it.

Feeding is going great

Liam was able to do 3 feeds from a bottle yesterday. It's exciting because he's going beyond the doctors expectations. His nasal canula was also lowered to 2 liters of room air yesterday morning. This morning around 7am he decided he didn't need his gtube anymore for feeding so he pulled it out himself. Cindy talked to one of the head NP's and suggested that they do a trial and let him do all his feeds via bottle instead of putting back the gtube. I was able to bottle feed him 4 times today before having to leave. The orders are to continue bottle feeding through the night. So the nurses will actually have to work tonight instead of letting him sleep through the night. The doctors, nurses and ocupational therapist are amazed with him. They said that this wasn't normal protocal for CDH babies because they usually have feeding and breathing issues but their letting Liam call the shots on this one for once. I also talked to them about the nasal canula. They told me that there was no set time for weining and every case is different but generally they leave each setting on for 48 hours before lowering it again. When they get to 1 liter they sometimes leave it instead of removing the nasal canula just until their sure the baby has the hang of feeding and isnt breathing too rapidly while feeding. They don't think that will be an issue for Liam because he has gotten the hang so quickly and easily. I keep expecting a set back. I know he is doing amazing and it is shocking but I cant help to expect one. I dont want to get my hopes up and atleast this way I wont be heartbroken when he does have a set back. It also makes the progress that much more exciting. Liam is a fighter and he will fight to the end. I thank God every day for making him such a strong little guy and I know that this will only make him stronger.