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.

Guess I'm not over it.

Yesterday when I went to the grocery store, I saw a man with Down syndrome bagging groceries. It made me sad. I want my son to be more than a bagger at a grocery store when he's 40.

staying the course

Dr. LaJoie said to stay the course with the ACTH. I guess she expects it may take a little longer to show it's true usefulness. So that means another week of full dose injections and major cranky baby followed by yet another EEG and weaning off of the ACTH. If all goes well with the EEG that will be the end of it...I think. If not, Mermaid will then start up another medication that I am not learning how to pronounce unless she actually has to take it. But it is not quite FDA approved and imported from Canada. Either way, I want to figure out how to donate my unopened vials of ACTH to NORD because each of those suckers costs about the same as a new car and I'd love to share that gift with another family.

Tangent about scrubs

Scrubs are a scam. Granted, there was never any PSA indicating that medical professionals would dump all of the street clothes in a locker and then have a scrub down with boiling water and lye soap prior to donning their sterilized scrub suit especially for medical providers. But "scrubs" sounds like scrubbed, tubbed, germ free and ready to give you sanitary medical attention. However, I see these people in scrubs walking the streets, buying their lunches from street vendors, leaning against exterior walls and taking smoking breaks. Scrubs give a false sense of germ security. I think people really wear scrubs because it makes wearing pajamas to work acceptable. I get it. Medical professionals work crazy hours and it's hard to tell whether it's day or night when you're living in florescent lights for 18 hours straight. I should get some scrubs so that I can sleep in them and then roll out of bed ready for work. What do you think? Should I get the plain or something a little edgier with hearts and angels? ;)

It's not a problem.

I think being a mother is pretty demanding. And, of course, it's never the only thing any of us is doing. I don't know, but I anticipate being a mother to Lizard Loaf in particular will be extra demanding. I've decided I don't have time to battle with my weight anymore. Mother of two, one of them with DS... I can't imagine when I'd find the time! So, I've decided to be thin and be done with it. I'll give myself a month off after my boy busts out. Maybe six weeks. And then I'm moving on, leaving the weight behind.

*phew* What a relief! I feel better already...

Mermaid resurfaces

The past several weeks have been full. We met Mermaid's service coordinator. She came into our home and explained the whole process to us and then arranged for some evaluators to check out Mermaid's sweet skills. We picked a provider that would send all the evaluator's at once rather than spread out over the course of a week or so. We all anticipated the 5 evaluators emerging from their van in their matching scrubs a la A TEAM (now you know how old I am ;). My Hero and I were fiddling around with a potential theme song for them, but alas they ultimately had to spread it out over three different days. They did still wear scrubs. That all happened at the beginning of August and we were anxious to get services going.

Before the evaluation reports even arrived something else started going on with out little Mermaid. I thought it was gas pain at first or possibly hiccups. Her body would jolt a little almost like a startle reflex and then it would happen again and again seconds apart. As this pattern emerged a friend connected me with her friend, I'll call her Providence. Providence has a gorgeous daughter with Downs who had recently been diagnosed and treated for infantile spasms. Of course this all came together during the last two weeks of September when every medical professional in the entire city was on summer vacation. It took me four or five days just to get a live person on the phone to make an appointment for Mermaid. Providence was so encouraging giving me phone numbers and checking in with the professionals she knows to help Mermaid get in to see a pediatric neurologist. She told me not to give up nor to put it off.

The Tuesday before labor day weekend we got the golden ticket which included an appointment with pediatric neurologist extraordinaire Josiane LaJoie. It's a beautiful name and she is a beautiful person. We started with a little EEG and then a meet and greet with Dr. LaJoie. The surprise ending was that Lily and a friend won a three night/three day stay at the NYU medical center including unlimited crushed ice and round the clock EEG and video surveillence. I was the friend. I called My Hero and we hustled to figure out what to do with the other four children.

The upshot is that Lily had five seizures, for that's what they are, while being monitored. She was prescribed a steroid like medication called ACTH. Initially, our insurance denied the request because this miracle drug costs about six thousand dollars per shot (.5 ml). The six week therapy would cost roughly 175K. I would ask for physician back-up, too. An organization called NORD (National Organization for Rare Disorders) called and donated the first precious vial of ACTH to buy us a little time to work things out with the insurance. We would not have been allowed to leave the hospital without the medication plus I had to get trained to inject Mermaids chubby little thighs. If you want to donate to something, NORD is a worthy cause. Meanwhile, the lovely women working for the insurance tel-pharmacy in SD have little babies, too so they kept me on the phone until it was all worked out. Ultimately, the entire supply arrived simultaneously.

I thought we would get to leave the hospital Thursday morning after proving that I could give Mermaid the shots. I practiced on every kind of fruit I could find. I practiced on the vinyl "daybed" in the hospital room. I even practiced on myself a few times to get a feel for it so I wouldn't choke up when I had to inject my sweet babe. That's when they told me she would still have to stay the night for observation after her initial dosage. *sniff* Our whole family was disappointed, but we were reunited Friday and grandma stayed an extra night. We had Mermaid's blood tested a couple of times over the next six days and her paternal grandparents came to relieve m-grandma and immerse all the kids in extra attention after the deficit. I think we were all suffering attention deficit disorder and all the attention really helped!

At the end of the first week on ACTH Mermaid wasn't having so many clusters or episodes just a little spasm here and there. They upped her dosage. I took her in on Friday for another EEG and it still doesn't look perfect. I was pretty depressed to learn it wasn't working and that even blinks and stares represented electrical misfiring in her brain. I've been pretty discouraged for about 48 hours. I went to church today, though, and I'm starting to feel uplifted and even hopeful. I'll meet with the neurologist Monday to see what's next. I'll also be meeting with an osteopath on Tuesday who may be able to help. I'll report back on that. Lastly, we finally have our IFSP which translated means: big meeting withe everyone to decide what early intervention services Mermaid will receive from the city.

Now for the special thanks section:
Special Thanks to My Hero for being the most available and optimistic best friend.

Special Thanks to our homeschooling friend on the east side for keeping our four children entertained and fed during a 6 hour play date and told us that it was no big deal. It was a big deal to us.

Special Thanks to Mermaid's maternal grandmother for interrupting her visit to other grandchildren to ride the un-exotic chinatown bus in the middle of the night to care for her four motherless grandchildren at my house. She also donated her favorite mini flashlight to the cause so I could read or visit or see my way to the bathroom at night without disturbing our lovely roommates.

Special Thanks to My Hero's employers for being so understanding about skipping so many work hours to be with Mermaid and I or with the fantastic four at home.

Special Thanks to friends and fellow church members who spontaneously started bringing meals.

Special Thanks to Providence who continued to encourage me and send positive thoughts our way. She even came by the hospital for a 1 hour visit bringing healthy snacks full of protein, magazines requiring very little brain (which was all I had), and a sweet toy for Mermaid.

Special Thanks to our dear upstairs neighbors who entertained me with hours of conversation at the hospital one night. Always a pleasure.

Special Thanks to our UWS homeschool recess coordinator who continues to send prayers and offers to help our way. She is always thinking of my kids and sending email links to websites and articles that might interest them. This is especially good because I keep forgetting to think about them.

Special Thanks to NORD and to our insurance tel-drug ladies in SD...you know who you are!

Special Thanks to Grandma and Grandpa DC who spent their labor day weekend giving us all the attention and Finnish meatballs we could hope for. It was very restorative.

Special Thanks to my Washington Heights friend who runs with me in the mornings, asks me about Mermaid, invites my children for play dates and doesn't try to stop my tears when they come once in a while.

Special Thanks to all our family and friends who were thinking of us and praying for us!