Our little Eli has a nasty case of jaundice(google it), but it is being caused by something that they can't seem to find the cause of. The pediatrician doing rounds came in to do an assessment on Friday and immediately noticed it and his levels were terribly high for a baby of his (hourly) age. They told us they were going to have to take him to the NICU overnight and he should be ready to go the next evening at the latest....and yeah....things got worse, quick.
They score the levels of jaundice on a scale called the Bili Rubin level. Eli went from a 14.4 (which they say was dangerously high for him only being 30 hours old) to a 22.4 in 24 hours. The Dr. told us you start getting scared when it hits 24 or 25...at his "age." and 22.4 was a bit too close for us. We cry a lot. They started explaining all of this stuff to us, and started talking about all of these tests they were going to have to run to try to figure out why his levels weren't going down at all. It was so hard to understand all of the medical jargon they were throwing our way, as if we have been to medical school. They have asked us soooo many questions about our medical backgrounds, our nationalities....our everything, and nothing is giving us a reason to why his levels won't go down at all. They said that if the levels got high enough it was a strong possibility that we were going to have to have Eli get a blood transfusion. That was so scary to sign those papers to give permission for that. So scary. They take his Bili level every 4 to 6 hours...whatever the Dr has ordered at the time. Because of his levels they decided no more breastfeeding, so I have to pump and freeze. . .booo.
As of last night Eli is now in an incubator, with IV's and a feeding tube, under lots and lots of lights. (the lights are the "cure" for jaundice, funny, b/c we haven't seen much of a difference.) It is the most terrible feeling in the entire world to have to open up this two little doors and reach in to touch my son. I can't hold him, it is so awkward to change his diaper and I need his help b/c I can't reach all the way across him through the incubator. Zach and I have worked as a team to get a lot of stuff done with him being in there. hehe. Nothing like team work to change our sons diaper. ha!
At 2:15 this am they tested his Bili level again and when I went to pump at 4:30am they told me it had gone down to a 20.8 (from 22.4). So that was awesome news...then this morning it went back up to 21.8....but not as bad a jump as previous numbers. This afternoon when they took it, it went down to 19.5 and thats what it is as of right now. They are testing him again at 6pm.
But anyways, the tests from last night have come back the way the Drs want them to and they are nearly convinced that the reason he is fighting this so hard is b/c of the hematoma on the back of his head (which was from the vaccuum they had to use to pull him out.....the cord was wrapped around his neck.) And we are hoping that is what it is, b/c that means the lights shining on him will eventually do their job. Apparently they don't usually catch the jaundice until day 3 to 5..they caught is on 1.5....and it usually has to top out...level...then go down. We are PRAYING that he is in the "leveling" stage of things, and that it doesn't go back up.
He is eating well, he is going to the bathroom just like he should...and doing everything he should be doing to get better, we just dont understand why he isn't. His weight dropped a significant amount, and went way up this morning to 6lbs 5oz...almost birth weight already, so that is awesome! I feel confidant with the Dr's and the things they have been doing....I just hope they don't let me down.
I think that I would be more ok with the fact that he is an incubator if I knew what was wrong with him, specifically. But the unknown is absolutely killing me. I cry at the drop of a hat while doing nothing...eating..peeing...sitting and talking to my "EB Cool" hehe. Zach has been amazing. He gets emotional to...what daddy wouldn't, but he has been so strong for us, and asks all the right questions when I'm sitting in the corner crying my face off.
Our parents have been here with us so much, and I wouldn't have it any other way. Its amazing that we are now parents, but when things get tough you still just want your Mommy and Daddy. We have awesome parents. My mom has been driving around like crazy getting stuff for me and even took me home yesterday to let me pack a bag and to see my dog. (We are staying on the NICU. Its a free service they offer if you have a baby here...we are about 20 steps away from Elis room and can be in there and stay in there as much or as long as we want. Its nice that its a private room. I am lucky enough to sit and let him watch me pump every 3 hours. ha! I can't wait to tell him that when he is like 10 years old. hahaha)
I have no idea if I touched everything, and I have no idea if some of the stuff didn't make sense, but you get the jist. Like I said...my mind is going in a million different directions. I KNOW this could be a million times worse, we are lucky that he is here with us and as of right now we think his condition can be fixed...it just may take a week or 2 of us staying in the hospital. . .but it is our "worst" right now. Please keep us in your prayers. Our little guy is a fighter. He only crys when he is hungry or pooped in his pants. . .he didn't cry when they put his IV in, or when they put the catheter in last night (they didnt have to keep it in), or when they prick him every few hours to check his Bili level. He is the most amazing little man I've ever known...I'm glad he's ours. We love him so much we could explode.
Thank you for all of your texts/calls/visits. We need all of the love and support we can get.
This is when he was just under the lights. stretccccch!
The cutest thing I've ever seen...even with his little goggles.
these 2 are Eli in his little incubator. he is amazingly peaceful, even though we are miserable not being able to hold him. we cannot wait until he's allowed out of there, even if its just for a few minutes.
Thanks again for everything.
xoxo
Tay
