Just waiting...

Well Nick was transferred to Children's Mercy yesterday and it has been such a difference in hospitals. SMMC does not have a bad NICU but we really felt like he was just in limbo there because it seemed like they weren't going to do anything more than just keep him stable until he was transferred. It was very frustrating that they were not feeding him for a few days, he seemed uncomfortable and all we wanted our little boy to do was eat...it's the most natural thing you can do! But almost immediately after we got to Children's Mercy they gave him a feeding tube, did an x-ray to make sure it was in the right place and starting giving him 1 mL/hr continuously. We were so happy and relieved that he was getting something good in his tummy! The next day they increased his feeds to 2mL/hr. Every once in a while the will put a syringe on the end of his feeding tube and suck out any residual left over from that feeding. Well towards the evening he had quite a bit of residual left and they decided to stop his feeds for an hour then restart it. He did well after that and today they increased his feeds to 4mL/hr! Praise the Lord! But he had not pooped since Tuesday so they decided to give him a suppository. He finally pooped some but not a whole lot, but I don't think they are worried about how much he poops as long as he poops :o)

He is also a little jaundice, so he is under a bili light and they also put a bili blanket under him to help get rid of the jaundice faster. I am really starting to not like it though, because he cannot be out of the light for very long so the first day I didn't get to hold him at all, then Wednesday I was only able to hold him for half an hour. But thankfully today we are able to hold him a couple times for an hour each. His bilirubin level was 18 Tuesday, 14 yesterday and down to 9 today so we are really praying that by tomorrow he will be off the lights totally and we can hold him all we want! Yay!

Oh, a little good news! Before we left SMMC some of the rapid tests he had done for trisomy 13 and 18 came back negative! What great news! We are still waiting on the other chromosomal tests that take much longer to get back, maybe by next week.

The ophthalmologist came and saw him almost immediately. They had to dilate his eyes. I wasn't there for his exam but Joe said she had to pull up his eyelids and he was screaming so bad that Joe had to walk away because it was bothering him so much. That broke my heart, I know they need to do testing and such but it's so hard to know that your child is in pain, even for a moment it is so hard to watch. So he has a couple different things going on with his eyes. In his right eye he has a coloboma. The doctor didn't say that this would cause any issues. He also has holes in the back of both eyes, again she didn't know if he would have vision problems yet, they will have to do more testing in a few months. Also, his left eye is smaller than his right and slightly hazy. We are not going to stress over any of his eye issues for obvious reasons, we don't know what it means. We don't know if he will be able to see or if he will just have to wear glasses or have surgery or what. We are just praying that God will take care of him and hopefully he will be able to see all of God's beautiful creations.

They are continuing to do other testing and as of right now we have no other information or answers as to what is going on. We met with a genetic counselor to go over family history. They will be the doctors that will take all of the information from exams, family history, different testing and chromosomal blood work to find an answer as to what is going on. If it's just a spontaneous occurrence or if he has some sort of disease or syndrome.

They said that if he continues to do well with his feeds then they will have an occupational therapist come and start working with him and us to start using a bottle.

The person from the cleft team came and talked to us as well. She was just explaining a little more about future surgeries and timeframes. She also put a strip across his top lip to pull his cleft together so it will start forming better and not be so open. He already looked so different with the strip holding his cleft together.

I also spoke with the Nurse Practitioner, Laura, and she told me that if he continues to do well with his feeding and no other issues arise and everything looks well then he will be able to come home! She said it might take a while but we are hoping and praying for the best!

Joe and I have been trying to coincide taking care of Brianna and Benjamin and going back and forth to the hospital. It has been very hard trying to balance everything and make sure our kids are not feeling left out or upset about us not being around very much. Especially the last couple of days because Brianna just started kindergarten and Ben got sick the other night and was throwing up, but we have lots of family and friends helping us and it has really been a blessing to know that they are well taken care of while we are at the hospital. Thank you such much everyone!!

I am trying to remember to be joyful and thankful everyday and just try and enjoy my little boy in these first few days of his life. He is such a sweet baby and he really doesn't even cry very much, only when he has gas or someone is pricking his heal or drawing blood! But I would be too!

Thank you for the continued prayers as we try and figure out what's going on with our little guy, they are so appreciated and needed.