Still not sleeping...may be delirious...addicted to online browsing

(Back in the good old days, when she couldn't escape...)

Need to sleep...need to sleep...

Mac is in her new bed and sometimes she sleeps, but she goes to bed late and gets up early and it is driving me crazy! and now i have to sit with her in order to have her fall asleep. it is so stressful. and now i'm so used to waking up that sometimes I can't sleep even when she does. i'm sick, tired, and a bit delirious. which is making me a little crazy. i guess it's good practice for the newbornd days ahead, but i was hoping to stockpile my sleep to make it through.

I'm also addicted to online shopping. i don't actually buy anything -- i just pick things out and put them in my cart. i think that it is part of the nesting instinct, since most of the things that i pick out have to do with babies. or maybe it is b/c i know i can't really go shopping since we're saving money, so this is how i get my kicks?

Afraid of the Dark

Why is Mac afraid of the dark? For almost a year now she has been going to sleep in her own bed with no problem. Last week she had a bad dream, so I let her come into our bed. For the next few nights, she would wake up in the middle of the night and cry until I brought her in with us. Then she wouldn't go to bed without me sitting next to her crib in the rocking chair. Now she won't even go to sleep in her bed at all. She says she is afraid of the shadows and the dark. Even if she is in a room with lights on and the next room is dark, she is afraid. Poor little one.

Her new room is all painted and her furniture is coming on Friday. It is so cute and she seems to like it. I hope she will sleep in it.

Our First Setback

So the title says it all -- we experienced our first setback this week. After two weeks of believing that Oliver's spina bifida was a meningocele, we found out yesterday that it is, in fact, a myelomeningocele. Based on the results of the amnio, the doctors have revised their diagnosis. Which puts us back to having surgery within 24 hours of birth and the threat of a chiari II malformation and hydrocephelous. The doctors confirmed that as of the last ultrasound, he did not show any signs of brain malformities (the chiari II or swelling). However, they recommended that we come in for another evaluation this week. If the malformation has developed in the last few weeks, we could be considered candidates for MOMS, the study that performs intrauterine surgery. I don't necessarily want to go down that road, but I guess we have to consider all of our options.

This is so disappointing, since we thought we had really beaten some odds. I'm sure that there will be many more chances to do so in the future, but it would have been nice to start out a few steps ahead.

It has been a long but blessed week. It started out with our first visit to a local neurosurgeon on Monday. He was only working with the ultrasound report provided by my OB and St. Peter's, so he could really only elaborate on what they had written. Likely paralysis below the knees, minimal movement at the hips, and probable shunting soon after birth. After a weekend of reading up on spina bifida, the idea of hydrocephalus and shunting were the most scary to me and Tim. Would the baby have learning problems, developmental delays, worse? Unfortunately, this doctor couldn't give us any answers other than the basics and the "in most cases." We didn't want to know about most cases, we wanted to know about our case.

On the way to the doctor's office on Monday, Children's Hospital of Philadelphia called with an opening for Tuesday. I stupidly turned it down since we had an appointment scheduled for Friday and I didn't want to cancel class on Tuesday. As soon as I hung up the phone, I thought "Duh." So I called Tim and he confirmed that I should have taken the appointment. I called them back but they had already given away that appointment. However, another opened up, and we were put on the schedule for the next day.

That night, after dinner with Mac, we drove down to Philadelphia to spend the night so that we could be at the hospital the next morning for our 7:30 appointment. It's pretty sad when your only "alone time" comes when somebody has to go to the doctor or the hospital (something we had learned a few weeks previous when Tim's mom was in the hospital). I didn't sleep much, and it took forever for the alarm to go off the next morning. Finally it was time to get up and go to the hospital.

We started with an ultrasound that took 2 hours. It was pretty cool -- much of it was a 3-D ultrasound, so we saw some amazing shots of the little man. The tech was really nice, and told us that he didn't see much swelling on the brain. That made us feel better. Then we had to wait an hour for a meeting with a genetic counselor. After that was lunch at McDonald's -- you know you are in a quality hospital when they have a cafeteria and a McDonald's. After that was a fetal echocardiogram, and finally an hour-long MRI. That was a very long and uncomfortable hour and at that point I was exhausted. Finally, we got to meet with all of the doctor's and go over the results of our tests.

We met with Dr. Sutton, the chief neursurgeon, Dr. Beddington, and OB, and a third doctor whose name I don't remember. They started off speaking very slowly and deliberately -- I was petrified that they had found something even worse. However, what they told us was actually much better than we could have expected. Rather than being an open legion, or a myelomeningocele, they believe that he has a meningocele, which is a skin covered legion. This makes a huge difference not only in when he has to have surgery (6 weeks to 3 months after birth, rather than within 24 hours), but also in whether or not he has swelling on the brain. They told us taht after looking at all fo the tests, he doesn't appear to have any fluid on the brain. And if their diagnosis is correct, he won't get any. We could not believe we were getting such good news -- our biggest fear was being taken off of our shoulders! We must have looked so relieved that the doctors actually started to remind us how serious a condition Oliver still has.

We decided that I will still have CHOP follow the pregnancy and then I will deliver down there at about 38 weeks. All of Oliver's follow-up care will take place there, as well. We dodged two major obstacles this week: a worse diagnosis and insurance issues. When Tim and I got to the elevator, we just looked at each other and said "That was good news, right?" I think that we were both in shock.

As the week has gone on, it feels funny not to have any follow up doctor appointments. I don't go again until the week after next, and that is for my regular OB visit. It is nice to be out of crisis mode for a while. Who knows when we will have to snap back in, but for now, it feels good.

In addition to learning what great family and friends we have, we have also been reminded that God is good and will take care of us. There is nothing more that we could ask for.

So I still can't believe the prognosis that we were given. Our unborn baby, heretofore considered to be perfectly healthy, has spina bifida. When we went for our level 2 ultrasound on Monday, our only thought was really girl or boy? None of my blood work had raised suspicion, so we had no reason to believe that they would find anything wrong.

After the ultrasound, the doctor came in and said that our baby looked "relatively healthy." This immediately raised red flags, but he followed it up with "your baby might have club feet. We're sending you for a follow-up ultrasound at St. Peter's to confirm." So we left thinking that it was no big deal, relieved that any problems could be easily dealt with.

Fast forward to Friday, when I went to the hospital for my follow-up ultrasound. After the technician spent almost an hour looking, the doctor came in with a young looking medical resident to take a look herself. I started to think that something might be wrong when the resident stood there with a screwed-up look to his face, squinting at the screen with his mouth puckered. And then the doctor started counting bones, saying "so it starts about here." I thought she was counting the bones in the toes, but this still unfortunately confirmed that he had club feet. Of course, it turns out she was counting the bones in the spinal column, not his toes.

Clues that something is going wrong with your ultrasound: the doctor asks about any history of genetic abnormalities in your family. You answer no. She repeats the question with different wording to make sure that you understand what she is getting at. Um, still no. So of course at this point I realize that something might be really wrong. I ask her why she is asking, and she tells me that there is something wrong, but she'll tell me when she has completed the ultrasound.

I had researched club feet, and saw that in some instances, it was a sign of spina bifida. However, because my blood work had come back fine, and we had no known history of it in the family, I didn't worry too much about it. As I lay there, I started to wonder if this could really be something. And within minutes, the doctor confirmed that was exactly what it was: spina bifida.

She was very nice and showed me everything on the ultrasound. She was sort of clinical and not entirely optimistic, but still very nice and pretty thorough. She said he hadn't moved his legs for the entire ultrasound, and that it seems as if his knees and feet have already been affected. She's not sure about his hips. She explained a lot about spina bifida, which I won't go into here. It was so hard to absorb, but I believe that I remember almost every word verbatim.

Another sign that something is really wrong: when your doctor chases you to the elevator and gives you some follow up information and a hug. This is a doctor that I had never met before, who sees so many patients a day, and she gave me a hug. It was so sweet, but also confirmed in my mind that the news I had just received was, in fact, very bad.

So Tim and I have cried and talked and kept busy all weekend. Our family and friends have been great support. It's Monday now, and I haven't cried in almost 24 hours. That's pretty good, I think. We're just waiting for the next step: the doctor is supposed to call me to schedule an amnio and a consult with the pediatric neurosurgeon this week. I'm praying it will be soon, and that we will get good news. Mac has been great -- absolutely oblivious and wonderfully 2. She is climbing on everything, running around, making us all laugh. She is her same sweet self, and I appreciate that so much. I know that no matter what happens, we will have a great family.