Home, Sweet Home

We're home now. Hurrah! That CT scan threw us off in the wrong direction for a while. It looked like one of Lizard Loaf's arteries was compressing his trachea. They wanted to do a scope down his throat to check it out. That would have meant general anesthesia. And if it was doing what they thought, he would need surgery on the artery to pull it out of the way.

Fortunately, our expansive team of experts was able to figure things out. Where it looked like Lizard Loaf wasn't fully expanding his lungs to most of the doctors, the lung doctors could tell that he had fluid in his lungs. The cardiologist also said, separately, that it didn't look like the artery was causing a problem. The ENT gang backed off on the bronchial scope. At this point, Lizard Loaf had been cleared of all infections and was just in the hospital because he needed to be on oxygen. The big question became: How did the fluid get there?

Our amazing pediatrician recommended a swallow test. This means enriching Lizard Loaf's bottle with barium and taking a video x-ray. As it turns out, he has been breathing in some milk when he eats. He has a delayed swallow, which means he sucks in the milk, but doesn't start to swallow at the same time. So, some of the milk falls down his open airway. The answer is relatively simple. We need to thicken his milk with some rice cereal. This will give him better control of the fluid when he's swallowing, and also, as I understand it, make the particles to big to get all the way down to his lungs. Meanwhile, he's on oxygen, which is not as much of a hassle as I thought it would be, and we are treating him with chest claps to help the fluid get out of his lungs. We hope it all works. It's a low-tech operation. We're trying to find a good nipple for his bottles that let the thicker liquid through easily without gushing out so much that he can't control it. Turtar and I received different training on how to do the chest claps, and that concerns me. Besides, it seems a little funny that clapping a cupped hand on your baby's chest in certain ways for 12 minutes in the morning and at night will get fluid out of his lungs. Here's where I defer to the experts again. We see the lung doctors in two weeks, and we hope we can get rid of the oxygen tube. We hope that this aspiration problem is the only cause of the fluid in his lungs and that we have the final solution already.

We are enjoying a quiet weekend at home right now, just enjoying the size and rhythm of our newly expanded family. A few days ago I had what might be a generic epiphany. Down syndrome is LL's burden, not mine. I think that before I may actually have been crying for myself, thinking about my own hardships. (How selfish am I?!) At the hospital while I held him, I just cried and mourned all the extra burdens he already has in this life, all the stumbling blocks he's faced and will face. I know that his soul is eternal, and Down syndrome is not. I know that in this life, we will cherish and love him, but I'm anxious to meet him in the next life when he has been freed of these burdens.

Turtar and I have also chosen his theme song: "Workin' Them Angels" from the Snakes & Arrows album by Rush. Here's the chorus:

All my life

I've been workin' them angels overtime

Riding and driving and living

So close to the edge

Workin' them angels - Overtime

There and Back Again

Our baby boy is finally here! Turtar is working on a new codename, but we'll keep calling him Lizard Loaf for now. Nervous mother that I am, I decided to be induced at 39 weeks. Everything went great, and he was born 5 hours after we arrived at the hospital for the induction. Other than being a little jaundiced, he seemed perfectly healthy. We went home on day two and drank Martinelli's with every meal.

A day and half later, we were back at the hospital. I noticed he felt cold around 4:00 am when I fed him. A call to the doctor led to a visit to the ER. Fortunately, we live 15 minutes away from a rock-awesome children's hospital. They don't take chances, especially with newborns. It did kind of freak us out, though, when someone actually met us outside, rushed Lizard Loaf and myself back to a room while Turtar checked in, and started a battery of tests. Oh, and we had about 6 nurses and doctors all crowded around him. Later, we had fewer. We found out nothing had been happening in the Children's ER for the past 2 hours. We were all the action.

Apparently, low body temperature is just as significant as a fever, and possibly even more so. We expect a fever to develop to fight an infection or virus of some sort. With a low body temperature, the body might be so weak it can't even mount a fever; it can't even fight. That's one option. It could also be caused by just about anything. Best case scenario: He is a sleepy baby. He didn't eat well. So, he didn't flush out his jaundice, and he gets sleepier. He eats less, etc., and becomes dehydrated. Dehydration could cause the body temperature to drop. Worst case scenario: Meningitis (I think). Lizard Loaf was very dehydrated. The doctors said he would have been admitted to the hospital just for that reason. But, meningitis can be fatal, so they aren't going to settle for just an IV when the problem could be so much bigger.

I can't even keep track of all the tests he's had, all the results from the tests, and what the possible meanings of those results are. He was placed under a heat lamp right away. They took his blood, which is very sad and difficult by itself (he has my veins; we're stingy with our bodily fluids). They put in an IV, also next to impossible, and had to strap it place. It takes up almost all of his forearm and looks like he's wielding a brick. They attached leeds for heart rate and temperature. They taped something else (first to his foot, then his forehead, then his hand, then back to his foot) to measure his oxygen levels. His oxygen levels were low, so they put him on oxygen. They did a spinal tap so they could test his spinal fluid for infection. He was so dehydrated, it an hour just to drip enough spinal fluid into the little test tubes to run the test. They didn't have enough blood for his tests, so they had to take his blood again. The IV was set up to be used for a blood draw, too, but that wasn't actually possible, so they had to stick him again.... and again and again. They ER nurses blew at least 2 veins before they got blood, and it was coming too slowly, so they had to start that one over again and suction the blood from his veins. It was a very rough morning, to put it gently.

For now, his body temperature is holding steady. He is eating much, much better. At one point, he ate 60 ml at once where he had been eating 10 ml at a time. Mostly, he's been in the 25-40 ml range today. He is peeing and pooping well, which is flushing out the jaundice. They have been able to reduce his fluids. He's had to have blood drawn several more times, but the tech seemed more capable. At least he didn't blow any veins, though he still had to suction the blood. And the last blood test was just a foot prick. They have tried taking him back off oxygen, but his levels drop when they do. So, they x-rayed his lungs. They called the x-ray 'abnormal'. They wanted to get a better look at his trachea, so they put a scope down his nose this morning. They still couldn't see what they wanted, so they did a CT scan. We haven't heard back on that yet.

Other tidbits: His thyroid levels were slightly elevated, as is his red blood cell count. His hepatitis test came back negative, so they took him off that medicine. We saw an speech pathologist today who watched him eat. He swallows well, and sucks well, but does have trouble maintaining his seal, which means poor efficiency. He needs 'cheek support'. (As if I needed incentive to squeeze his cute little cheeks!) This is apparently really normal. When the speech pathologist mentioned this ('cheek support') to the nurse, she said, 'Oh. Okay.' So, I squeeze his cheeks in a little when I'm feeding him to keep the seal on the sides. We also saw some ENT guys (three of them... this is a teaching hospital); they are the ones looking at the trachea. Well, everyone seems to be looking at his trachea. First the pediatrician wanted to see it, but he had to look at with a radiologist, and then they showed it to the ENT guys. I guess it's another radiologist that will look at the CT scan, as well as the ENT guys and the pediatrician.

Tomorrow, he will have been on antibiotics for 48 hours. We hope by then to have ruled out the other major infections and to be going home. Hopefully, he'll be cleared and cured completely. Maybe there will still be some problems that need to be tended, but without staying over. But, will they have uncovered something else that will require extending his stay? How much do the red blood cell count and thyroid levels matter? What is the deal with his trachea? Why is he needing oxygen at all? We'll all stay tuned...

And I promise pictures another time. He is abnormally beautiful. And I did a full face of make-up before I went in to be induced, so I'm not even that embarrassed by the pictures of me. Soon, I promise. For now, there are two pictures of Lizard Loaf on this blog.

Acclimating

The medicine is called Vigabitrin or Sabril. It's time to learn the name since Mermaid will be taking it for about 6 months. it comes in a little foil pouch and I mix it with a little water each day to dose Mermaid morning and night. It's only good for 24 hours. She has been taking increasing dosages of Vigabitrin while tapering off of ACTH. But even the miracle drug from Canada has it's downside. Mermaid has had a lot of rapid eye and head movement. She seemed confused. She forgot how to nurse...surely she couldn't have lost her appetite. Eating was really the only skill she had left on track.

She wouldn't respond to the breast, but could manage the bottle. That's how I know she only drank 3 oz. in about a day. Her neuologist told me to hot foot it over to her pediatrician to see if Mermaid needed hospitalization again. Fortunately, she didn't look "septic" or "toxic." Their words. The took her glucose. Tested her urine and tried 4 times for blood, but came up dry. Mermaid wouldn't give them anything. It's probably because she was dehydrated. Mermaid didn't cry at all. She just grunted once or twice and almost fell asleep as the various nurses and doctors all tried their hands at a needle search for veins beneath her chubbiness. It's just not natural to be so accustomed to poking and pain. I'm sad for her acclimation.

Ultimately, Mermaid perked up, nursed and her Vigabitrin dosage was cut in half. She has continued to nurse, but doesn't cry if she's hungry, so I have to think of it. I know I'm not currently producing enough for her and last night she accepted an additional 12 oz of formula. So far I have noticed some shaking in her right arm and head a la Parkinson's disease. She is also sleeping like a newborn. It's been a couple of months since I've seen her smile. I miss that. I guess I'm acclimating just like Mermaid because this is not making me cry either. We are absolutely doing the best that we can and I need all my energy for taking care of my family. I can't waste it on worry. I'm grateful for every day that I get to hold me sweet little one and kiss her chubby face.