Hey everyone, I wanted to put some information out to you all so you can do what you do best–encourage and pray. Since my last post Ren’s friend J arrived and has been a blessing in so many ways. With her help we were able to give all three of our boys the attention they needed and start really bonding with E. I’ll try to give you a recap later in the post, but the important thing to know is that E’s already finicky eating took a radical downturn over the weekend. He would start retching nearly every time we offered him a bottle and really only took one well when he was asleep. He was still making wet diapers when we brought him into the pediatrician this morning. He had lost 3 ounces over the weekend, and the Dr thought it best to admit him into the hospital and put a feeding tube in before it got any worse and he got dehydrated.
This came after an up and down week. We saw the urologist on Thursday and he said that E would need at least 2 surgeries 6 months apart to correct the problems with his penis/shortened urethra. I don’t feel like getting into to much more detail, but if everything goes well he should have fully functioning equipment at some point. We saw the skin guy on Friday and he gave us some creams for E’s skin and scalp, which should hopefully help him with his itching. He said the birthmark on the back of his head is nothing to be concerned about now, but should be removed before adolescence because it could become cancerous. So that makes 4 surgeries if you count one heart surgery.
Then came today. We knew he wasn’t eating enough, which is why we brought him into the Dr in the first place. It was a little unexpected to be admitted into the hospital. We are in the hospital on base and Ren and J are spending the night there with E while I took the O and Y home to bed. The staff at the hospital is being very regimented with the feedings and weighing diapers to ensure his digestive system is actually working correctly. On that note, we did actually have some good news today.
1. The radiologist(s) did an upper GI study on Friday and a lower GI study today. After conferring with their head guy in San Antonio, they decided that E’s abnormality in his small intestine was not a big issue because he has the right stuff further down the line which should keep it from getting twisted (Ren knows all the anatomic words if you need to know). Anyway, they are pretty sure they won’t do surgery on his digestive system and that it is flowing correctly.
2. The results from the FISH test came back negative for DiGeorge syndrome. E has all his chromosomes and does not have the markers for that specific syndrome. That being said, the Pediatrician is trying to get our appointment with the geneticist moved up because he is fairly certain there is something going on and it would be good to know what it is. Apparently you can’t just run every test in the book on his DNA. I guess this stuff is more like a treasure hunt than a virus scan on your computer.
3. They were worried that his feeding problems were being caused by hydrocephalus, but after two brain ultrasounds have pretty much ruled that out. Whatever it is, his brain looked fine on the ultrasound (which really doesn’t tell a lot, but it’s something)
For those of you with faith, I encourage you to pray specifically for these things:
That E will grow in the hospital, and that we will determine whatever is causing him to reject the feedings. In order for him to get better, he needs to start eating.
That Ren and I will have peace about the situation and its uncertainties. Pray for our faith to hold strong, for us to accept and weather the trials of this time and the future.
That E will bond with us and us with him. It is surprising how easy it is to see him as a bunch of symptoms or a riddle to be solved. He is our precious little baby boy, and no matter what happens, the love we have for him is unconditional.
For those of you who question a benevolent God in light of the situation, consider:
Ren and I might not have started down the path to adopting E if we had known his whole health problems. But what better place for this baby at this time than a family with free health care, a steady job, and a supportive home and work environment.
When E’s approval came from USCIS, I was on an exercise in eastern Europe and scheduled to deploy to the war in 3 weeks. In a flurry of activity, I was replaced on the exercise, flew home, and flew to Vietnam in less than a week. This enabled E to get an IR-3 visa and get his citizenship/passport to come to the UK and get started with the help he needed. If any of this had gone differently, imagine the difficulty of the situation.
I was pulled home from my ensuing deployment for the abdominal surgery that didn’t happen, only to be here just in time for this current situation. Apart, Ren and I were near the end of our ropes, but now we are together and doing what needs to be done.
Today, E was very fussy during the first 2 1/2 feedings he had with the feeding tube. During a break in the 3rd feeding, our Chaplain was there and prayed for E. During the rest of the feeding I held him and just about everyone else was in the hallway, but he was calm and looking into my eyes as I sang to him. My first thought was that it was the way I was holding him or because it was my singing or my smell. It didn’t occur to me until later that it was immediately after we prayed that E actually accepted the food.
The bottom line is that it is about God. His perfect plan and His perfect timing is easy to see if we look.