I am beat!! I just got back from taking my little witch trick-or-treating. Perhaps Kevin will have to do the honors next year. No, really, it wasn't that bad. We actually went out twice. The first time we left we made it to two houses. We were headed back down the driveway after the second house when I got hit with the old "I have to go potty." Great. @@ We had just made her go to the bathroom before we got her into her costume. So I scooped her up, told her to hold it, carried her home, pushed past a group of kids at our front door and raced her to the bathroom. Too late. :( Well, we tried. She finished up on the toilet, but when we were cleaning her up I discovered, the hard way, that we didn't get her costume all the way out of the way. I told Kevin to grab some scissors because we were just going to cut the mess off (it was only a little bit of the mesh under skirt and it probably added to the "tattered" look of the costume). We got her cleaned up and I got her back into the rest of her costume and then manned the door while Kevin took care of the stuff that had to be changed. Then we were off again.

She ran and jumped and hopped her way down one side of the street and back up the other. We had had a talk about the rules of trick-or-treating, so at least she didn't try to go into all the houses this year....well, at least not many. She doesn't knock on the doors very loudly, but she sure can yell "trick-or-treat." She was pretty good about saying thank you, too, though I did have to prompt her a few times. Everyone thought she was really cute. We made it home just as it was starting to sprinkle. Her pumpkin was pretty full and pretty heavy. I know this because I had to carry it home from the last house. At one point she switched it from one hand to the other because her arm got tired!

All in all, I think it was a pretty successful night.

Today was Halloween at Kevin's plant. The employees are encouraged to dress up and decorate and the kids are encouraged to come and trick or treat. So last night I made the two little alterations that Alison's costume needed and this morning she was ready to go.

I think it probably goes without saying that Alison was very excited this morning. She even went in to go to the bathroom before we left without any fuss. Then we got her into her costume, grabbed her pumpkin, daddy's candy and the Halloween candy bowl (which he forgot to take with him this morning) and off we went.

Kevin met us at the door and we were ready to go. Alison picked out a chocolate ear from the candy at the reception desk and then had to pull it out of her pumpkin to show every one we passed after that. "Look what I have!" She was all over everywhere. She'd go into offices to get candy and then have to check out what everyone had on their desks. Since she was one of the first to come through, she got a ton of candy. We kept telling her to only take one piece, and they kept giving her two or three. By the time we were done, her pumpkin was almost completely filled and was so heavy that she could barely carry it. At one stop, she was given a headband with little witches in purple dresses on it, which matched her costume perfectly, but she wouldn't wear.



I'm glad we had the "dry run" with Alison's costume. We found out that her witch's hat is too slippery on the inside to stay on her head while she's moving, so I'm going to have to come up with some way to fix that. I think I can get a little piece of inexpensive material and make a couple of little ties to tack to it and we'll just tie it on. Otherwise, it's a great costume for her. It's not so great for wearing in the car though. After we were done, off it came and she went home in her oversized, black turtleneck, tights, church shoes and a pair of shorts.

I had my regular doctor's appointment last week and it was with the one doctor I haven't seen since this whole mess started, so the nursing staff wasn't familiar with our case. I guess at 30 weeks, it's normal for them to ask if you've thought about whether you're going to breast or bottle feed, which is exactly what the nurse did. It kind of caught me off guard and I took a moment to answer because I didn't want to say the first thing that came to my mind. I just simply told her that the baby was not expected to survive. That led to an akward pause and she made a note in my chart and said that she would make sure it didn't happen again. But it got me to thinking that perhaps there should be some kind of label that could be attached to the charts that everyone would recognize and be alert to lethal problems in a pregnancy so they didn't ask all the routine questions.

Anyway, lest you think this is going to be a morose post, I was talking to my mom later that afternoon, telling her how the appointment went and I said everything was the usual except I got hit with the "have you thought about how you're going to feed the baby" question. And my mom said "hmmm, haven't really thought about feeding the baby at all." That may seem like kind of strange thing for a mother to say when her daughter is in my position, but in reality, it was exactly, word for word, the first thing that came to my mind when the nurse asked me. I come by it honest. :)

So I've been thinking a little about an e-mail conversation I had not too long ago about the use of technology in managing pregnancy these days. Is it a good thing or a bad thing?

Well, were it not for all the advances in infertility treatments, I would not be able to get pregnant at all. Given the way things have turned out, perhaps that might not have been a bad thing. Also, were it not for in-depth ultrasounds we wouldn't have known about Alison's spina bifida until she was born. And were it not for a couple of doctors who thought maybe it would make a difference if the lesion of a baby with spina bifida was closed before it was born, Alison wouldn't be the child she is today.

I've been pondering whether or not it would have been better if we hadn't known about everything that is wrong with this baby. We could have just gone on our merry way and been happily wiling away the last 12 weeks without a care in the world, preparing for a new baby without knowing that we would be coming home empty handed. Instead, we have spent the last 12 weeks in a quasi state of mourning, waiting for the end to come, wondering why it hasn't. All of our preparations stopped as soon as we found out there was a fatal problem. We already had Alison sleeping in a regular bed, so there was no going back to the crib, but we didn't go ahead with turning our guest room into her new room and moving her. We didn't bother to invest in a double stroller. I didn't bother to get the Baby Bjorn that I really wanted. We bought no new baby things at all. We didn't spend a lot of money for nothing (well, not counting what it cost us to go through all the infertility treatments this time). We won't come home to an empty nursery. Instead, we're having discussions about what to do with our child after he or she dies.

So which is the better way to go: having time to prepare or getting the devestating news at the end? I don't know.

So yesterday was our appointment at U of M. At 29 weeks we have a baby that is measuring correctly except for one place. It's chest is only measuring 25 weeks. The heart is still taking up a large portion of the chest cavity, but there is some question as to whether that's because the heart is really that big or because the chest is so compressed. There is no fluid around the baby. We were able to see the veins running to the kidneys, but not the kidneys themselves, nor the bladder or the stomach. Which means the kidneys aren't producing urine to fill the bladder to be expelled and taken in by the baby, develop the lungs, fill the stomach to go back to the kidneys. Basically, what we saw is almost certainly a baby that won't survive.

But then again, the cardiologist told us with almost certainty that this pregnancy was going to end in fetal demise weeks ago. And that didn't happen.

Still, we have to face the fact that we are going to come home without a baby. However, there's a big difference between accepting and preparing for the fact that you are going to deliver a stillborn baby and accepting and preparing for the fact that you are now going to deliver a live baby have to watch him or her die.

So as of now, the plan is to continue weekly appointments at my regular OB's office. At the beginning of November I will see the perinatalogist that originally diagnosed us to take a quick look at the baby and go over surgery risks, etc. and get on the surgery schedule for delivery at 34 weeks, which is the week before Thanksgiving (though if we can talk him into it, I'd rather wait until after Thanksgiving). We are not going to be delivering at our local hospital, because they don't have a NICU, but at the same hospital where Alison was born, because they do have a NICU, just in case anything can be done. All docs involved feel this is an acceptable course of action because I really don't want to deliver at U of M if there's really nothing that can be done, and the doc there said that if by some chance there is something that can be done that the hospital where I will deliver can't handle there would (probably) still be time to transfer the baby to U of M. Either way, this part of the nightmare that has become my life will be over.

Kevin and I have agreed that cremation is the route we are going to go, partly from a financial standpoint, but also because I just can't handle the idea of a burial. I just can't. And I don't think we'll have any kind of funeral or memorial service, either. But we will take pictures. I think that's important. I don't think there is any benefit to having Alison see the baby now.....she's just too little to understand what is happening and I think it would be way to confusing for her.....but when she's older, she may want to see the pictures.

When told that my daughter has spina bifida, after we got through the initial shock and devastation and went through with fetal surgery that we were told was unlikely to change her prognosis as far as her ability to walk, a thought occured to me. And that thought was that if she wasn't going to be able to walk, then once she got to big for us to carry all the time, she'd be eligible for a handicapped plaque and we'd be able to park in the close up spaces all the time. Of course, for Alison the surgery was a great success and she not only walks, she runs and jumps and does just about everything a typical 3 year old should, so no free pass to the good parking spaces for us. But that's ok. I'm quite happy with the alternative.

Searching for something positive to take out of our current bad situation, I was thrilled when my doctors decided that I didn't have to drink that disgusting super-sweet orange drink and take the glucose tolerance test. It's not that I think it's really all that bad, though I do remember feeling really crappy for several hours afterward, but I was still glad not to have to do it. There didn't seem to be much point to it, since we've been on fetal death watch for the last 11 weeks. So imagine how bummed I was today when my doc said she thought I should go ahead and take the test. But it's ok. Tomorrow I'll drink my disgusting super-sweet orange drink and be happy about it, because the alternative, even though we've been preparing for it, is much worse than feeling crappy for a few hours until the sugar gets out of my system.

Who else thinks like this? I hope I'm not the only one. I guess it's some kind of coping mechanism. A way of trying to take a couple of the tons of lemons we've been given and making a little bit of lemonade, so to speak. And really, I don't care if anyone thinks it's weird, because sometimes you just have to do what you have to do to get you through the bad times.

So here's a little bit about what's been going on in my life.

I had my weekly doctor's appointment last Tuesday. It was more of the same. I was measuring 28 weeks one day before I would be 28 weeks, so baby has "caught up" again, and his/her heartrate was up into the 150's again. That was a bit of a surprise. The heartrate has been hanging out in the upper 130's to mid 140's for the last 7 or 8 weeks. I think it's because the baby was having an active morning. :) My blood pressure, which the week before started out way high, was back to normal. That made everyone happy. I have my next regular weekly appt. tomorrow and we have our appt. at U of M on Wednesday.

Here's one more benefit to my having lost 60 pounds last year. I haven't gotten rid of all my "fat" clothes yet and I've got some long sleeve shirts that are proving to make great maternity shirts. We've been operating under the assumption that this pregnancy will end at any time, so I don't want to shell out a lot of money for clothes I may not need next week, though I did buy one pair of jeans (which I hate) because I needed something to wear out in public that weren't dress pants or capris. So these shirts, and my x-large sweats, are coming in real handy.

I am continually amazed at my daughter's memory. I know that she is nowhere near doing any actual reading...she's still hit and miss in recognizing most of her letters...but the other night she "read" me an entire book. "The Big Red Tub" has been her favorite book since we checked it out of the library a couple weeks ago. She has gotten to the point where she can tell the story, with very few mistakes, just by looking at the pictures. Last night she did the same thing with parts of "Stellaluna."

Alison and I watch Blue's Clues in the morning, while she is drinking her milk. As I was changing her from her pull up back to her underwear after her nap the other day, she pointed to her underwear and said "A clue! A clue!" At first, it looked to me like she was pointing to one of the flowers on her kitty underwear. When she moved her finger a little bit, I saw that she was, in fact, pointing to a paw print. It was pink instead of blue, but to her it was still a "clue." Kevin wore one of his college sweatshirts over the weekend and it had a big paw print on it (Hampden-Sydney Tigers) and she told him he was wearing a clue. It's so funny to me how her mind works sometimes.

Last night we picked out a Halloween costume for Alison. I went through the racks and picked out all the ones that I thought she might like and that we could put extra clothes under so she wouldn't freeze to death if it happens to be cold on Halloween night. I had about 5 costumes....two different witches, two different angels, and a '50's chick. Of course, she wanted them all. We finally got it narrowed down to one of the witches and one of the angels. Then she picked the witch. We tried the costume on her, because it looked a little big, but found that it would be just right. I hung everything else back up and we prepared to go. Then she changed her mind and said she wanted to be the angel. So we tried that costume on her. Unfortunately, cute thought it was, it was a little too small. There wouldn't have been room under it for extra clothes. Fortunately, we were able to talk her back into the witch costume. It has a hat, so she's excited about that. Yesterday afternoon she and Kevin put up our outside decorations. There's a couple of fake pumpkins sitting on the porch and some stuffed plastic (bag) ghosts and pumpkins hanging from the apple tree. She is so excited about her decorations. We still have some window clings to put up and some other inside decorations. I don't know if how she'll contain her excitement when we get around to those! Today she brought home a real pumpkin from the neighbors. It's a nice one, too. It will be great for carving, when the time comes.

Anyone who has ever spent a short period of time with my daughter will tell you that she talks almost constantly. And she loves when she gets the chance to talk on the phone. However, we've noticed that whenever she's talking to my mom and my mom asks if she's been a good girl, she gets real quiet, real fast. She doesn't want to talk about whether she's been a good girl. So imagine how funny it was when Kevin told me about a conversation Alison had with his step-mom yesterday. He had taken the opportunity to call her while he and Alison participated in our local CROP Walk. He had given Alison the phone and she was talking away and then all the sudden she got real quiet. And then she started talking again. When Kevin got back on the phone his step-mom told him what happened. She had asked Alison if she was being a good girl. When Alison stopped talking, she thought she had gotten cut off. I ended up talking to my mom tonight and I told her about what happened yesterday and all she could do was laugh.

It's not like we are constantly telling Alison that she's a bad girl or not telling her that she's a good girl....far from it. So I don't know why she doesn't want to talk about whether or not she's been a good girl. But it's kind of funny that she gets quiet when ever anyone asks her.

I had a big long entry written last night, but blogger ate it when I attempted to publish it. :( So I guess I'll try and reconstruct it.

I am now just over 27 weeks pregnant. We had our weekly appointment yesterday. I also had an ultrasound. It was kind of a good news/bad news thing. The good news is that the baby is still growing. I was able to read the head measurement and it was about 26 1/2 weeks and the baby's estimated weight is 1 1/4 pounds. The bad news is that there is still no fluid (or possibly only very miniscule pockets) around the baby. But I must say that I have now thoroughly confused all my doctors. Our appointment was with my "real" doctor, whom I haven't seen in about 5 weeks. After the u/s we talked about what has been happening in those last 5 weeks, how we thought at that time time the end was imminent but that something suddenly changed only two days later. That, together with what the u/s showed and the fact that is has been 9 weeks since the baby was diagnosed with fetal hydrops made my doctor decided to call the perinatalogist we saw that gave us the initial diagnosis, just to see if he had any input. His thoughts? He can't understand why the baby has made it this far. His concern now that we are fast approaching viability is that without fluid, the lungs can't develop. There's a technical term for it, but for the life of me I can't remember what it is....pulmonary something-or-other. He feels we should go back to U of M and have them take another look at things and pursue chromosomal analysis. This will tell us if there is a lethal chromosomal problem, which would determine how things are handled at delivery.

That's right...we are now entertaining the possibility, remote that it is, that this pregnancy will result in a live (though very premature, I'm sure) birth rather than a stillbirth. I swear, if I wasn't actually living this, I'd be thinking that someone was making up one hell of a whopper to garner everyone's sympathy. Of course, the chances that the baby will survive are smaller than the possibility of it being born alive.

When we met with the pediatric cardiologist, we asked about when the baby could be viable. The doctor said that healthy babies can be viable from 25 weeks onward, but that for our baby, with the heart damage it already had, we would need to get to 31 or 32 weeks. Since that was still 12 weeks away, we knew it was never going to happen. But now, here we are, staring that "goal" in the face. Because we never imagined it was possible, we didn't even bother asking what could be done at that point. Now we're kind of wondering.

We had problems with low fluid with Alison, though hers were surgery related. At that time, our doctor had mentioned the possiblity of amnio infusion. Yesterday, after our appointment, Kevin and I talked about it. Not in a particularly serious way, more along the lines of "hey, remember how Alison had low fluid problems and Dr. W____ mentioned doing a "reverse amnio?" We quickly agreed that it probably wouldn't do anything in this case and wouldn't even be worth pursuing. I mentioned this to my doctor when she called yesterday and she did say that sometimes doctors will go ahead with it in order to be able to get a better look at the baby or to make it easier to do a cordiocentisis. So this may actually be something suggested for us. There are risks involved, particularly fetal demise. That's why Dr. W____ wasn't chomping at the bit to do a regular amnio. He was concerned that if the baby died, we wouldn't know if it was because of fetal hydrops or the amnio. But since we've been preparing ourselves for the baby to die for the last 9 weeks anyway, what difference will it really make, right?

While I was chatting with the doctor, I menitoned that I had talked to my mom that afternoon and she said she wouldn't be surprised if Dr. W____ wanted to see me again. I told her I agreed, since who wouldn't want to see my second "freak of nature." The doctor laughed and said she didn't know how I did it, kept going through this, and didn't understand why I was being put through two such difficult pregnancies. I said sometimes you just do what you have to do and that God must have a warped sense of humor. :)



Now, on a totally unrelated subject, and as kind of a follow-up to my last entry, yesterday between 12 pm and 6 pm Alison went through 3 pairs of underwear and 2 pull-ups (because by that point we ran out of clean underwear), and when all was said and done, was on her third pair of pants. The three pairs of underwear were wet accidents, the two pull-ups were poopy ones. Each and every time, the incident was announced to me and accompanied with "but it's ok, mommy." Who would have thought that all the progress we had made over the last 6 weeks could be undone with three little words: oh, that's ok. So I want to say a big thanks a lot to my wonderful MIL. @@

What kind of idiot tells a potty training/ed child, who has had an accident in their underwear, that it's ok to do that? That would be my mother-in-law.

Alison is doing a great job with the potty, but we still have accidents. Most of the time it's just a wet accident, but last night, for some reason, she pooped in her pants and didn't say a word about it. She sat in it long enough to end up with a red butt. Needless to say, my husband wasn't happy when he discovered it, just as he was going to do her stretches and then get her in the tub.

His mother called just as he was getting Alison into her pajamas. He put her on speaker phone and let her talk to Alison while he was finishing up. Because the monitor was on, I got to hear the conversation, too. Grandma did more talking than listening, but Alison did get a chance to tell her that she had pooped in her underwear, -- and she specifically said underwear...not diaper, not pull up -- and my lovely MIL told her not once, but twice, that it was ok that she had pooped in her underwear. I wanted to reach through the monitor and the phone and strangle her. I also wanted Kevin to tell her that it wasn't ok for Alison to go in her underwear, but he didn't. Perhaps the next time it happens I need to bag up her underwear and pants and send them to grandma to deal with. Then perhaps she would understand why what she said was so inappropriate.....then again, maybe she wouldn't.

And people wonder why I'm glad that my MIL lives 16 hours away. Fortunately, Alison has not taken her words to heart, because she did tell us when she had to go today. So we didn't have to deal with another accident, even though she was wearing a pull up (since it was just before nap time).

We have instituted the naughty spot at our house. Yes, I will freely admit to having become hooked on Supernanny. Mostly, it reassures me that things at our house are not nearly as bad as I might sometimes think they are.

So anyway, we have a naughty spot now. It all happened Friday evening at supper time. Alison and I came into the house and were on our way to the bathroom to wash up for supper when she noticed the butter dish sitting on the dining room table (we were having corn on the cob). She reached for it and I told her no. She took the lid off and I told her no. She stuck her finger into the butter and then stuck a finger-full into her mouth, as I shouted no. I then sent her to her room. It was at this point that I realized that was a dumb thing to do. In her room she has a bunch of stuffed animals and all her books. Who wouldn't want to be sent there? So I told her to come out and sit at the end of the hallway, facing the wall. She would have to stay there for 3 minutes. Voila....instant naught spot. So there she sat, for three minutes. She didn't get up and try to go somewhere else, she just sat there. When the timer went off, I went and sat with her and explained again why she was there, she apologized, and we hugged. Then we got ready for dinner.

Since then, if we even raise our voice at her as a warning, she will either tell us she needs to go to the naughty spot or head down the hall and put herself in it. I'm not sure if it counts as punishment if you don't mind what you have to do when you're being punished.

I did a rather dumb thing today. I finished reading Suzanne's Diary for Nicholas (by James Patterson) today. It was a pretty good book, and a fast read....289 pages of fairly large type, for a paperback....I think it took me about 3 hours, total. Although I had some idea of what the book was about, I really wasn't prepared for the last diary entry. I have become teary over books before, but I don't really recall a time where I have completely broken down over a book. I'm talking a real honest to goodness sobbing, shaking, gulping breakdown. That's what the combinatinon of the story, the pregnancy hormones, and our current situation resulted in.

Now, that I have finished that book, the last one in my stack, I have nothing (new) left to read until we go to the library on Thursday. I guess I'll have to go peruse my bookshelves to find another quick read to tide me over until then.

Alison got a helium balloon at the grocery store today. We hadn't planned to buy one but she left the store with one anyway. At Kevin's company picnic they were giving the kids helium balloons, but Alison couldn't have one. They were latex balloons and we don't let her have stuff with latex. So Kevin told her he would buy her a balloon at the store. She didn't really say anything about it last week, but today, she said she wanted one and daddy had said he would buy her one. So now she has a pretty orange and pink butterfly balloon.

As of right now, she's been playing with her balloon for almost 25 minutes. The ribbon is just long enough for her to be able to reach it by herself when she lets go and it floats back up to the ceiling. So that's what she's been doing....letting go, letting it float up to the ceiling and then snatching it back down again. Sometimes she'll take it and put it on the floor and say "stay on the floor, balloon." But as soon as she lets go, up to the ceiling it goes again, and she doesn't quite understand why.

Well, 25 weeks down. How many more to go? Who knows. It should be 12 more, but realistically, that's not going to happen. I had my weekly check-up yesterday, and it was more of the same. Pele is still living up to his/her nickname. S/he is apparently still growing....after 2 weeks measuring at 23, yesterday was 24 1/2. Not quite caught up, but still showing growth. His/her heart rate was still in the 140's. None of this is what is supposed to be happening. The baby is supposed to be slowing down, both in movement and heart rate, and s/he should not be growing.

My check-up was kind of weird yesterday. There are 4 doctors and a nurse practitioner in this practice. Of those 4 doctors, I have one that is "my" doctor. When pregnant, they rotate us through all the doctors so that we will have met them at least once or twice if they happen to be the doctor on call when it's time to deliver. Anyway, back to yesterday's appointment. This is only the third time over 2 pregnancies that I've seen this particular doctor. I don't think I care for her very much. Maybe it's just her way, or maybe it's just that she was behind schedule yesterday, but she was very short with us. And she was kind of contradictory, too, in a way. On the one hand, she was verifying that I would be getting my Rhogam shot at my 28 week appointment, like there was nothing wrong, and on the other hand, when I asked about whether I needed to do the glucose tolerance test, she said no, because obviously no one expects this pregnancy to last long enough for it to be an issue. Anyway, we've decided that if movement, heart rate and growth are still the same next week, we're going to ask to have another ultrasound.

For anyone who thinks cell phones are not a distraction when you are driving, I've got news for you.....they are!

Last night we came home from spending the weekend with my parents. I decided to take over driving after we stopped to pick up something for dinner, mostly because I just wanted to get home and I drive faster, or at least at a more consistent speed, than Kevin. I also figured that he could finally get ahold of his mother, since he tried to Sunday night and she ended up calling our cell twice and our house 3 times because she is incapable of listening to and comprehending messages left on answering machines. But that's another story.

So we switched places and Kevin did call his mom, but she wasn't back from visiting his grandmother at the nursing home. He left a messaged that she could call the cell and he would be able to talk because he wasn't driving. So I knew that she would be calling back eventually.

We'd been on the road for a little more than an hour. We passed a cop that was just finishing up with a car s/he had pulled over. I had slowed down to the exact speed limit and a little ways down the road started speeding up again. I knew that the cop had finished up and pulled out. At the exact time that I was cruising down the highway at 79 mph and realized that the cop was coming up behind me really fast, the phone rang. Somehow, in that split second, my brain connected the phone with the cop, thinking that it was coming at me with lights and sirens, even though the flashing lights weren't even on. I nearly drove off the road! The cop blew past me, off on some other business, and Kevin answered the phone. And once my heart slowed down, I calmly drove us the rest of the way home.

It's been a long time since I've written anything. And a lot has been going on.

We had our appointment with Pediatric Cardiology at U of M, and they basically confirmed what we expected. They baby is not going to survive. What they did tell us was that this was not originally a heart problem. The heart formed properly. But the right ventricle, which is supposed to be doing all the work in utero, is just barely pumping. The left ventricle has taken up the slack, but it cannot continue to do so indefinitely. Also, the heart is definitely enlarged and there was a lot of fluid around it.

A week later, we were back at U of M for another detailed ultrasound and a follow-up appointment with Ped. Cardiology. The ultrasound was awful. There was no amniotic fluid around the baby, making it nearly impossible to see anything very clearly. The person doing the u/s groaned and grimmaced the entire time. I know it was hard for her to do her job, but there wasn't anything that could be done about it. Things were the way they were. After the u/s, a doctor came in to talk to us, and his bedside manner was pretty much as unpleasant at the u/s tech's. He wanted to know what we had been told about the baby's viability and the cause of the problem. I just wanted to tell him that we weren't there because we wanted to be there, we were there because Ped. Cardiology wanted us there, we knew that the baby wasn't going to survive and why it wasn't going to survive, and we didn't need him to tell us that. Since they couldn't see if the baby has any kidneys or not, the doc mentioned the possibility of having us come back for an MRI to check for them and we told them no. It's not going to change anything, and it's a pain in the butt to get down there for appointments anyway. From there we went downstairs to our Ped. Cardiology appt. where the staff was much nicer. They rechecked everything, double checked something things they thought might be causing the problem, but they looked fine. The doctor said they could have us back in four weeks if we wanted to, but that it was up to us. Again, we declined, for the same reasons we declined the possibility of the MRI.

During these appointments, Alison was with my mom. She came to stay at our house for the initial cardiology appoinment, and then met us in Ann Arbor and got a motel room for Alison to take a nap in for the follow-ups. Alison had had an appointment of her own that morning. Once we were done with our appointments, we met them at the motel, went back to the mall to pick up some shoes for Alison and me, had dinner, and headed back to Ohio to my parents' house. You see, my grandmother had died early that week and the memorial service was the next day.

We got through the service and came home to plan for a birthday party. That's right, I'm now the proud owner of a three year old. :) We had a small party with just the three of us on Alison's actual birthday, and had my parents' and the neighbors over for a bigger party the following Saturday. During this time, I hadn't been feeling the baby very much. When I went in for my appointment Monday afternoon, I was fully prepared for there to be no heartbeat. I hadn't felt the baby in at least a day. The heartrate was a little slower and I was measuring a week behind. I still wasn't feeling any movement. Then all of a sudden, on Wednesday, the baby started going crazy, moving like it was before we knew there was anything wrong. And it has been this way ever since. I can't imagine that anything has changed, no matter how much I might hope that it has. Maybe this is just the last hurrah before everything comes to an end.

I just wish that if the baby is going to die, it would die now instead of dragging on and on. If this baby is not meant to be, we all need to get on with our lives. I realize that may sound cold and cruel, and like we don't want this baby. Nothing could be farther from the truth. This baby is very much wanted. I just feel like Alison has missed out on so much for the last 6 months, and all for nothing. For most of the first trimester, I felt crummy all the time and didn't have the energy to do much more than what I had to. Then, once I finally started feeling better, it got so darn hot here that I couldn't stand being outside very much. We went to PT and to the classes she took at the Community Center, but that's about it. Last summer we went to Dow Gardens pretty much every week, weather permitting. This year, I think we went twice, and it was before there was anything to do in the Childrens' Garden, her favorite place to go. Since we learned of the baby's problems, we've been trying to keep things as normal as possible around here for her, but how normal is it for mommy and daddy to be sad so much of the time? She know the baby is sick, but she's just too little to fully understand what's going on. We don't talk about the baby very much at all anymore, yet today, out of the blue, she told her Sunday school teacher that she was going to have a little brother. That left Kevin in the akward position of having to explain the situation.

And that's where we are for now....waiting.

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).