Well our little Nick is moving right along with using a bottle and getting kicked out of Children's Mercy! Today they said give him as much as he wants and he was eating 60 mL so we will see how much he really wants! They have gradually increased his feeds from 1 mL all the way up to 60 mL so he really is doing great with eating. He is using a special nipple called the Haberman, it looks like this
It's pretty amazing really, and takes a lot of coordination too! Since Nick cannot create a vacuum in his mouth he cannot get milk out of the nipple without some help. So while he sucks on the nipple I have to squeeze the nipple then release when he stops sucking. Plus he has to be leaning sideways so that the milk doesn't pour down the back of his throat and he can slowly swallow the milk. It takes a lot of attention and patience but he is a champ at it! He is also pooping like crazy! That is always a good sign!
He also got his feeding tube removed! Yay, that thing was so annoying and I'm so glad its gone!
He did have an MRI of his brain yesterday and they did find some things were smaller than normal but they don't seem to worried about it. They did it more for a baseline and they will continue to do MRI's to see how his brain is developing.
He also had his hearing screening yesterday. It took forever and he was getting so fussy. They said that he does have basic hearing but he does have hearing loss in both ears, the left is worse than the right. He may need hearing aids eventually. But he did have fluid in both of his ears, which apparently is not that uncommon in newborns, especially c-section babies. So they will repeat the test in a couple weeks and continue to monitor the fluid in his ears. Most all babies with cleft palates eventually have to have tubes put in their ears to help with ear infections. But they don't usually do it until 6 months old.
Occupational therapy has been working with the contractures he has in his fingers on both hands, they are talking about making splints to help. But he has already shown some improvement and hopefully they won't cause him any issues as he grows.
Really overall, Nick is doing really good but we still don't know if there is some underlying cause for all of his issues. We are still waiting on the chromosome testing results and should have them in the next couple weeks. I hate the waiting game but it's all we can do right now, wait and pray, pray a lot!
He's in a crib now and is keeping his own body temperature steady and they will be taking out his midline IV (in his head) today too!
We know how much a blessing he is and we want to be able to give him the best life he can have regardless of his disabilities.
Please continue to pray for our little Nick, that God will continue to do miracles in his life and that Joe and I will have the strength and wisdom to take care of him the best we possibly can.