There have been about three posts I’ve been wanting to write but haven’t been able to, I’ve been so busy but for now I’ll start with an update.
Levi is a month old today (6/11/11).
After Levi’s last surgery (where they removed a dead and perforated part of his intestine-you can read about that here) we were told we would have to wait a week to start feeding him again to let his intestines heal. This was completely unrelated to the duodenal atresia (blockage in the upper intestine he was born with and had already had a surgery to fix) and because it was a different type of surgery it would take him longer to heal this time. Last time they did it laparoscopically and he only had three tiny incisions on his belly. This time he came back with a large cut across about half of his lower belly. (I just realized I never wrote about the horrors of the first surgery…I’ll have to do that sometime.)
It was a long, and painfully slow week.
On Saturday we took a break from the hospital and took our 1 1/2 yr old Jayden to the Zoo. I knew that once we started feeds again with Levi I wanted to be there with him for every feeding every three hours so I wanted to go in rested (Of course I ended up exhausted and so stressed by Sunday because of many things, that my milk production suddenly stopped for the half of the day-but it returned slowly). There were only two things I wanted for my birthday, to see Jayden and for Levi to be able to eat. It is indescribable how excruciating it is to watch your 3 week old baby scream and cry for a week or more because he’s so hungry and while you have the food he needs, you have to just stand there and not give it to him. And then watch your year and a half year old clearly struggle with how much he misses you as you watch the summer of his second year slip away.
But on Sunday the Dr.’s felt Levi wasn’t ready to eat yet. The stomach tube was still getting out a lot of fluid so that meant it wasn’t passing through.
By Tuesday the Dr.’s felt we should go ahead and try feedings. He was still getting a bit more fluid then they’d like to see out of the tube and his x-rays didn’t look quite as good as they would like but they thought, “The normal healing period after this surgery is a week and it’s been 9 days, surely he’s ready by now”.
We started slow at only 10 cc every three hours. He was a bit sleepier as soon as we started but I figured it was because his body was working hard to wake up and digest. He took close to the 10 cc every time but we watched every little thing closely. It was very stressful. Every single feeding was terrifying and exhausting. I want to later write a post about the insane schedule I have when he’s feeding.
Tuesday and Wednesday went well in the fact that he took close to the full 10 cc every time but he was having a hard time “nippling” and it would take him almost the full allotted 30 min. This is something associated with the Down syndrome but it was incredibly frustrating. He was doing better with it last time he was eating and now he was worse. He would suck and choke and spit and have a hard time burping and I’m trying to not let him feel my stress and he chokes and struggles through only 10 cc, knowing he’ll have to get to at least 70 in 30 min. before he can go home… and I so desperately, desperately want him to come home. So I asked the physical therapist to come by and help.
On Thursday morning she came and at 9 a.m. he only ate 5 cc. I thought maybe it was because there was too much going on with us trying different holding positions and bottles and the surgeon stopping by to check him out in the middle and my obvious panic and whatnot. Just before the noon feeding he got really cranky but I figured he was starving because he didn’t eat much on the last feeding. When the surgeon saw him he said we need to get him up to 15 cc to force his body to start moving things along so when at noon he only ate about 7 they shoved a tube down his throat and gave him the rest.
He was cranky and restless until the 3pm feeding. When I went to do diaper and temp like we do before each feeding some things were worrisome. He had a fever of 99.8, he still hadn’t had a BM that day and his belly was red in a spot above his belly (but not swollen). The last time his belly was red and swollen they rushed him into emergency surgery to save his life. The Dr. came and looked at him and asked the nurse see if she could suction his stomach a bit through the feeding tube just to make sure he was passing his food. She pulled out 35 cc of bile! The Dr said “Stop the feedings now, put the repogal (stomach pump) back in and get that bile out of him, something’s not working right”. They got so much more from the tube I don’t even know how much (and they continue to do so).
He did eventually start having BM’s again that at first were ok but then began to be slightly bloody.
This was when I lost it and posted on FB that he was showing signs again that he might need another surgery.
Thursday night into Friday they he was ok with the pumping and only a little blood in the stools. It became apparent no one knew what was wrong and we were all just waiting for something to show us what.
Then on Friday at noon I went to change his diaper and get his temp. His diaper was dry and his fever was still around 99.8. For a little while afterward he was actually in a good mood, just looking around and checking out the world. Then all of a sudden he started screaming and crying and was obviously in pain. He screamed for a few minutes while I tried to calm him then he smelled like he had a BM. I had just changed him so I knew he had just cried in pain through a BM. I opened his diaper and it was filled with blood. A lot of blood. A lot more than I had ever seen in a diaper before.
I ran to get the nurse but she was feeding another baby so she told me to get the Dr. I ran to get her. She came in and thoroughly examined him, ordered x-rays and got on the phone. She came back and said she didn’t know what was going on still but she thinks we should schedule what’s called a “care conference” for Saturday. It’s basically when the Dr and primary nurse and family all sit down in a private conference room and make sure they are on the same page. It’s usually requested by the family when they have questions so the fact that she called it made me extremely nervous, terrified really. I worried she needed to give us a heads up on some really terrible possibilities.
The care conference was this afternoon and it went well. She explained everything and clarified a few medical terms we were misunderstanding. But basically she said it could be this or that, it could be functional or mechanical, it could be bacteria or blockage, it could be what we saw before when he needed surgery (although once it perforates it’s obvious and you have a short window to save his life), it could be a milk intolerance, it could be a lot of things and we can’t do any further tests until his inflammation goes down.
So now we wait.
We wait until either he shows signs that he needs emergency surgery again or he gets better and we can run some tests.
For now they are treating him with two different antibiotics incase it is an infection but they really don’t know. He is still having large bloody diapers every now and then. I wouldn’t even call them stools because there isn’t much stool in them, just lots of blood, but every time he doesn’t have one the nurses are so positive. We all just have to stay positive until there is no blood in his tiny newborn baby diaper ever again.
Even through all of this, I believe God is with me. I cannot seem to let it go even when logic seems to say otherwise. “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans 8:38
Note: Before I was able to publish this, it was Sunday. Today the Dr. called and while she said more of the same, she included that the surgeon said it will be at least Friday before we can run the contrast studies she would like to do. So another week of waiting and praying and hoping.
“…But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently. In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God. And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8: 24-28