Yesterday, I was thinking back to when I went through fetal surgery with Alison. Because of our choice to do that, we took a pregnancy where we knew the outcome would result in a live baby and made it into one where anything could happen....she could have died during the surgery, she could have been born extremely prematurely and died, she could have been really premature and had a lot of related health problems. We had no way of knowing what was going to happen. But once the decision to have the surgery was made, I also made the decision that she was going to stay put until 37 weeks and she was going to be fine. That's just all there was to it. She had other ideas and decided to only stay put until 36 1/2 weeks, but that was close enough. Despite some initial breathing issues, she was fine and was able to come home 5 days later. Aside from needing to be shunted for hydrocephalus at 7 months old, she has not had any real Spina Bifida related issues.

After pondering on this for a little while I came to the conclusion that I would really like to just be able to decide that this baby is going to be fine, too, and have that be that. But, at the same time I'm worried about what will happen to me if I make that decision and the baby doesn't make it. I talked to Kevin about that feeling a little bit yesterday and he said he just wished that we would go to our appointment on Wednesday and find that the problem was gone. That would be nice, but realistically we both know it's not going to happen.

Since yesterday, I've been feeling remarkably calm. I don't know if that's a good thing or a bad thing....if it means I know subconsciously that everything is going to be fine, or if I've just accepted the inevitable. Despite this calmness, however, I avoided our neighbors when we went to Kevin's softball game last night (the neighbor plays on the opposing team), just because they knew we were having the ultrasound and I didn't really want to talk about it last night.

Kevin has been doing research on the internet about fetal hydrops. Most of it is very discouraging. Yesterday, he came across some information that was somewhat contradictory to everything else we've read. It suggests that fetal hydrops is much more common than the 1 in 3000 pregnancies that we've seen elsewhere, that it is actually occurs in 1 of every 625 pregnancies. And it can develop quickly.....one woman in the study was fine at 24 weeks and at 26 weeks the baby had fetal hydrops. It also lists mortality rates ranging from 50% to 90%, depending on the cause. The cause with the best outcome has already been ruled out for us.....my test for 5th's disease came back negative. So we're still in wait-and-see mode.

And just to make things even more confusing, the baby has been more active in the last two days than it has been in over a week. It's frustrating because one of the symptoms of fetal hydrops is supposed to be decreased fetal movement and what we're getting is the opposite.

I can't even begin to describe how horrible the last two days have been. Yesterday we went for our level II u/s. I was slightly nervous, as this is how Alison's SB was diagnosed. We looked at the head and it was perfectly normal. The head was not lemon shaped, the cerebellum was not banana shaped, and there was no evidence of hydrocephalus. We breathed a sigh of relief. Then the doc came in to do his part of the scan and said the tech had seen something that he needed to check out. Right then was the beginning of our current nightmare.

What she had seen was some fluid around the baby's stomach. The doc didn't know right away where it was coming from so he kept checking this that and the other thing, like he normally would. Then he came to the heart. And what he found is that it is seriously enlarged and there is a large pocket of fluid around it. Also, while the left side, aorta and pulmonary artery are functioning fine, the right atrium is enlarged and the right side is not pumping as well as it should be. What this all boils down to is fetal hydrops, which is fairly rare and almost always fatal. So there we have it. The baby that we prayed for, and went through so many (very expensive) infertility treatments to conceive, is most likely not going to survive to be born. We thought things were bad when Alison was diagnosed with SB, but this is undescribably worse.

All hope is not lost....yet. I had blood drawn yesterday to test for viral or immunological causes. We should have the results in few days. There is still a possibility, though it is highly unlikely, that this might have been caused by exposure to 5th's disease. If that's the case, it can be cured by a blood transfusion. Then there are the rare cases where hydrops has cleared up on it's own. We are hopeful that maybe one of these will be the case for us, but we are preparing for the worst, however it is that you do that. We will see a pediatric cardiologist next week to see if she can better determine what is going on and what the prognosis really is.

This morning I had to do one of the hardest things I've had to do. I tried to explain to my not-quite-3-year-old that she is probably not going to be a big sister after all. I told her that the baby in mommy's tummy is very sick and that mommy and daddy are going to be sad for a while, but we are going to be ok. And then I told her that the baby is probably going to go live with the angels instead of coming to live with us. She understands about us being sad. And she kind of gets that the baby is sick. But I don't think she understands about not being a big sister.

Today, I had my regular OB check-up. It was hard. We had to explain what we found out yesterday and what that doctor thought the outcome would be. And then we had to listen to a healthy sounding fetal heartbeat that was in the 140's, which was better than it was yesterday. And the baby has been more active in the last 24 hours than it has been in the last week.

We are trying very hard to go about with our regular routine, for Alison's sake as well as our own. I took her to Story Time at the library this morning (and totally lost it when one of the other moms -- the wife of one of Kevin's co-workers -- asked me how I was doing. I felt so stupid.) and we will go to her art class and to Kevin's softball game tomorrow night. We are in such limbo right now, though. We've been working towards transitioning Alison out of her nursery and into a new bedroom, but now do not know whether to go ahead with that or not. If we aren't going to need the nursery for the new baby, then there is no point in moving Alison. She can stay where she is and we will still have our guest room. Alison's third birthday is going to happen in the midst of all this turmoil. Our trip to Maine will most likely end up being indefinitely postponed.

And all we can do is sit here and wait....and pray for a miracle.

At 5:18 this morning I was doing what normal people do at that hour. I was sleeping, soundly, oblivious to the thunderstorms rolling toward us. At 5:19 I was yanked from that sound sleep by an enormous clap of thunder, the kind that shakes the house. I layed there for a minute, listening for the inevitable wail that would come from the bedroom across the hall. For a few seconds, I thought I might have gotten lucky and she wasn't going to wake up, but the wail came. And I got out of bed and headed for her room. Kevin was a few steps behind me, coming out of the guest room (I have such a hard time getting comfortable these days that it works best for us to sleep in separate beds, that way we are both able to sleep). When he saw me, he headed back to bed. As I reached for her doorknob, the door opened, and there she was, crying about the thunder. (We're going to have to have a refresher course on the "big girl bed rules.") I scooped her up and plopped her into my bed and climbed in after her. I tried to get her to go back to sleep and tried to go back to sleep myself. Everytime the thunder would boom or rumble she'd either ask me what that noise was (the same thing it was before) or try to bury her head under the pillow or crawl further under the covers. I don't know if she ever went back to sleep, but I managed to do so twice. I could have kicked my husband when he came in at 7:00 to find his pants, that he didn't really need until we got up at 8:00, at the earliest. I had been sound asleep until she realized he was there and shouted "Daddy!" I almost fell out of bed. Would you believe that the thunder finally stopped, just when it was time to get up?

I dragged around, getting ready for church. I would have loved to stay home, but I was substituting for our paid nursery worker. Amazingly, we were ready to go on time. It was so very, very dark, darker than twilight, but not as dark as night. It started sprinkling again as we pulled out of the driveway. By the time we were half way to church, it was a torrential downpour, complete with thunder and lightening. She rode the whole way with her fingers in her ears. We were able to unload a mere 5 feet from the church door and still got pretty wet, even though I had an umbrella. Thankfully some of the men of the church were standing at the doors, ready to open them for people like me who had their hands full. The storm passed just after church started. I was relieved to see we would only have 3 babies in the nursery. I don't think I could have handled a full house. We lost one of our helpers to the 3 yr. old class, where they had 14 little monkeys. We're teaching that class in two weeks.....I hope I either get more sleep or we have fewer kids in there then.

After church we did our weekly grocery shopping. The longer we shopped, the more I dragged. When we got home, it was time for lunch. I couldn't stand it anymore. I had to sleep. And so I did. For 3 1/2 blissful hours. When I woke up this afternoon, it was bright and sunny. The roads, sidewalks and driveways are dry. There was hardly any sign of all the rain we had this morning. It's hot and humid.

Tonight I have to go back to church and work in the nursery again. Hopefully it will not be too busy. And hopefully, when I go to bed tonight, I will be able to sleep uninterrupted until it's time to get up in the morning.

Tomorrow is Kevin's birthday. I have been trying, in vain it seems, to "secretly" get stuff ready for him. You see, my helper is not quite three years old, and she doesn't quite grasp the concept of surprise and secret. This morning, after art class, we stopped at the grocery store to pick up some ingredients for Kevin's cake, a Mississippi Mud Pie, that we didn't have. I kept telling her, yes, we were going to make a cake and that it was a surprise, so not to tell daddy. Well, daddy came home for lunch and the first thing she tells him is that we bought eggs and are going to make a cake. @@ This afternoon, we ran out to the store to pick up a present, a new watch, and a couple of cards (praying I have enough birthday wrapping paper, or it might look like he's getting a Christmas present). Again, I kept telling her it was a surprise and we were not going to tell daddy about it. And again, the first thing she did when we got home was tell him that we had a surprise and that it was a present. Oh well, at least she didn't tell him what it was.

I was going to make the "cake" this afternoon while Alison was sleeping, but was very, very tired for some reason, so I decided to take a nap myself. I knew that Kevin had a late softball game tonight so Alison and I would be able to make it together after he left and before she went to bed. She loves to help me bake. I sat her down with a Signing Time video while I got everything ready and then called her to come and get her chair so she could help me. She always looks so cute pulling the chair away from the dining room table and shoving it into the kitchen, up to the counter, so that she can see and reach. Having a baking buddy is not the easiest thing in the world, but I hope that she will still enjoy baking with me as she gets older and can help do more. So now, all that's left to do is pop the cake in the oven, put the helper to bed, and clean up all the mess so that Kevin doesn't know what we were up to tonight. Fortunately it's cool enough outside to open up a couple of windows so the chocolate smell won't be as strong. He'll be surprised and wonder when I made it, even though he knows I know this is his favorite dessert and I make it for him every year (and for Father's Day, too).