THIS WAS SUPPOSED TO BE POSTED LAST NIGHT... NOT SURE WHY IT DIDN'T POST.
Kade has had a good day. He was increased on his feeds to 3ml/hr. He still has a pretty bad rash/infection on his cheek. Poor baby...yesterday it was breaking the skin and sorta bleeding, but today it just looks dry and looks like it hurts! :( his eyes aren't crusting or nose as stopped up. We held him but didn't breathe on him just in case...if this child gets sick, I will D.I.E. :) I just cant imagine getting sick in the NICU, butim sure it happens!
Nurse said he screamed and screamed for his bath (normal) and then she bottle fed him his "huge" bottle of 10cc (poor baby) and then he knocked out. So, he went down around 10:30 and normally doesn't wake up until 8:30. This is the beauty of having the IV feeds...he doesn't technically get hungry and wake up all night.
What his nurse told me today was that he isn't so say dumping, but she does notice after we give him that 10cc bottle, within the hour, he does pretty much "dump" and give all of it back to them. She said, like the Neo, that it is just going to have to increase extremely slow to train his belly...
I also talked to the Neo today about his hearing. I am very concerned (which is why I had him tested when he was 3 weeks old and he failed the ). My concern is this: he has cleft palate, down syndrome, and possible hearing loss / deaf...THREE issues that deal with his speech. I can not fathom him not being able to communicate with me. I already know this road will be hard, but in my eyes, this road will be impossible if what I fear is true. I am just praying that due to the excess fluid I had and the palate issue(where he has a hole in his palate) that some fluid may have gotten trapped back there and they can get it out. Again, my concern is, will that be done sooner or later. I certainly don't want him u der anesthesia another time, but I also want him to hear...so I just don't know. They are going to have an audiologist call me tomorrow, or talk with them. Woman's hospital doesn't have the high tech hearing machine. They just have the basic screening machine. I wish they would let us take him out, just for a sec, to go Dow. The road and get it tested...but we all know that won't happen. Just please pray this child can hear. As concerned as I am about his stomach, I am EQUALLY concerned about those little ears being able to hear us!!
We have been blessed with having Liz for our day nurse for pretty much the last 6days. She was the nurse that was with Kade and with us on the Sunday that changed us forever and kade had his major surgery. She has such a great bedside manner. In this position as a he
Less feeling parent, that means so much. These daily trips are wearing us down. I thought it would get easier, but I think it is getting harder. Maybe it's just bc it's Christmas, but it has been really hard. I refuse to not come though. I love snuggling with my "suga boy" as Liz calls him. He is truly so sweet!
Josh and I FINALLY bought some of our first gifts today and just finished wrapping about 30 mins ago...that's right, till 1am....BAH HUMBUG!!! Christmas is just not going to be the same for is this year, but Kenli will never see a difference in us. We will put on our happy face and just act as though all is well. What other choice is there? I am so excited to see her face when she opens her presents!!! She doesn't get anything big this year, just lots of little things. She is getting the Rapunzel (tangled) wig that is blonde and really long. It costs $12 and I bet that will be her favorite gift! Lol! She is so funny!!
PLEASE KEEP BABY KAMRYN IN YOUR PRAYERS!! She is the daughter of my friend Ashley's (friend) best friend Kristal(Kammy's mom) and oddly enough was born with basically the same thing Kade was originally born with. Kade had one "kink". They did Kammy's surgery today and she had 14 atresias and were only able to fix 13. They will have to go back in on Friday to repair the rest. I think kammyPlease keep her family as well in your prayers. So sad! I have never heard of this condition until Kade and then someone we know has basically the same thing. She is a little fighter and we know she will make it thru. Please spread to your prayer groups as well.
I know Kade has been prayed for everywhere. For example, I was getting my nails done a couple weeks ago and the nail girl asked how was the baby. I said, he's ok, but will be there 4-6 mths. The lady on side of me (whom I have never seen before) looks at me and says..."ohhh you're Marino" ..... I just looked at her...Lol and I was like, yea... (with a big question mark on my face like how do you know me?) and she said our church has been praying for you for months. I just thought that was so nice! Scary at first, haa, but so sweet. To know we have people praying all over the nation, makes us feel so blessed! Thank you all so much!!!!!!!! I could never repay you with the amount of hope you have given me!
Continue the prayers!
Xoxo
G
No comments:
Post a Comment