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  1. #11
    Posting Addict I'm_a_pepper's Avatar
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    I realize that what I've posted so far has mostly been very dry, factual info. And one of the reasons I wanted to start this journal was to write that kind of stuff down, but also to have a place to let out my emotions and how I am feeling about all this, day-to-day. Because believe me, my feelings change daily and sometimes hourly.

    I was really having a hard time with everything last week, after my last u/s. I think a lot of it was pregnancy hormones, but either way, I really found myself feeling down and weepy about everything, and also oddly, slightly angry about everything. I was having a hard time praying for the baby. I am normally a pretty positive person, but I found it was just getting harder and harder to be upbeat about things and to really feel like everything is going to be ok. For the most part, up until now, I have really had this overall, pervasive feeling throughout all of these ultrasounds, that everything really will be ok with the baby, that he won't have too many challenges, and the ones he does have can be fixed and/or overcome. But now, I guess I am second-guessing and maybe finally admitting that we may not have this baby for long. I haven't been in denial--of course I have definitely thought about the baby possibly passing away before this, but overall, I have remained calm that things really won't be as bad as the dr. is saying they could be. Now, I guess I am just accepting things as they really may be, and trying to be more realistic. It hurts like heck to think of the baby being born with so many problems that he may be a vegetable, and/or have seizures and many other neurological challenges, and that his little body may not be able to sustain life because of all of the problems with his brain. I just really, really can't stand the thought of him suffering. So as hard as it would be, I would rather God take him than to have to see him in any kind of pain or suffering.

    It is truly horrible to have to think about things like this. I never, ever thought we would be dealing with something like this.

    But I am feeling better about things the past couple of days. I have sort of found my voice again when praying about the baby, and that makes me feel better. I know the baby is in God's hands, and I have to keep reminding myself of that.

  2. #12
    Posting Addict I'm_a_pepper's Avatar
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    Baby boy has been kicking (or whatever he does in there) a lot today. I told DH that I have no clue what is going on in there. The last 2 appts, he has been breech, which explains the kicks that I feel down low, but the past week or so, I've also felt lots of flip-flopping, big heaves, and somersaulting down low. Feels like he's practicing his wrestling moves.

    I have 2 appointments tomorrow- my regular checkup with my OB, and another with the pediatric cardiologist. The cardiologist wanted to see me every month to check the VSD in the baby's heart. I am interested to find out if it's gotten bigger, or just what is going on with that.

    Man, I was going to go to bed early tonight. Looks like that's been shot to pieces. I plan on getting up and going to Walmart early (well, early for me anyway) tomorrow to get my Thanksgiving food shopping done. I despise going when it's so stinking busy and everyone and their brother is there, so I find that mornings are the best time to go - a little more peaceful.

    Also - the medical geneticist's office called today to try to set up an appointment. I missed the call, and when I tried to call back, the office was closed, so I will try to set that up tomorrow.
    Last edited by I'm_a_pepper; 11-24-2009 at 01:50 AM.

  3. #13
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    Boy, I feel like I have been hit with a baseball bat. I got up and went to Wally World this morning and bought Thanksgiving food, came home, went to my OB appt, came home for an hour or so, then got in the car and drove an hour to my cardiologist appt, drove back home, went out to eat with DH and DS, then we stopped by the Dollar Store for a few more things. Then it was my night to get all the trash loaded up in bags (it's trash day tomorrow), and we have seriously, like 7 trash cans in the house that need to be emptied out and new bags put in. So I did that, and then told DH I was going to drink some water and lay down for a while. I kept having Braxton-Hicks...I guess that's what they are...that uncomfortable tight abdomen and my back was hurting. I laid down and drank some water and watched TV for about an hour and I feel much better. DH has been wonderful today, watching DS all day long and giving him his bath, playing with him all day, etc.

    But I wanted to get on here and update about my appts. All in all, it was a good day in the way of appointments. The OB appt went fine--BP, urine, and baby's heartbeat were all fine. But the cardiologist appt was the real shocker of the day - in a good way! As the tech was doing the u/s, he sort of off-handedly said, "you know, I don't think I see that defect at all" (talking about the VSD--the hole in the heart). I thought I misunderstood him, so I asked him to repeat himself. My heart soared. Then when I met with the dr., she confirmed that they did not see the hole, or any other defect at all!! The tech said that maybe it had closed on its own, or maybe because the baby was so small last time, that they didn't really get a good look, so perhaps they hadn't really seen a VSD. But either way, there is no VSD now!! I don't have to see the cardiologist again this pregnancy. She said she might want to do another u/s after the baby is born, just to make sure, but that's it! It was wonderful to hear that bit of good news! Praise the Lord, and Happy Thanksgiving!

  4. #14
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    I haven't updated in a while, so thought I'd pop in. Nothing much new to report in baby news. Feeling lots of kicks/punches all the time now. I'm still waiting on the geneticist's office to call me back with an appointment - I had to send a bunch of paperwork in before they would set up an appt.

    Had a great Thanksgiving - ate waaaay too much food. We're probably going to stay here for Christmas, which is very much out of the norm for us. For the past 11 years, since we've moved to TX, we've gone home to see our families in another state for Christmas. This year, they'll have to come see us! I just don't feel comfortable traveling that far - it's hard for me to ride, plus I just don't feel comfortable getting that far away from home. Heaven forbid, if something were to happen and I went into labor early, we would be too far away from home to get back to our hospital. I know they have NICU's at other hospitals near where we would be going, but they don't have our history on file of the problems suspected with the baby. So, it just feels better to me to stay close to home. There's always next year for traveling again.

    I'm sort of looking forward to decorating the house, and a tree, etc. Normally I don't do much because we are always gone for Christmas, but this year will be different. I am most looking forward to seeing how Austin reacts to Santa Claus and all that. He is at the fun age where he understands about Santa bringing presents and he talks about it all the time.

  5. #15
    Posting Addict I'm_a_pepper's Avatar
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    Our appointment with the geneticist is tomorrow at 9am! They had a cancellation, so they called today to see if we could make it. Apparently (according to their website) it normally takes 4-6 weeks to get in. I am nervous as a cat, and stressed out. I doubt I will sleep well tonight. We have to get up early and take DS to a sitter, and then get on the road for a 1 hour commute + rush hour traffic. Ugh!

    I am anxious to see if the geneticist has any answers for us, or if it's more waiting and wondering.

  6. #16
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    Default 25w1d

    I wanted to update with some information about the geneticist appointment. The appt itself wasn't earth-shattering, as in, we didn't learn a whole lot of new information, but it was a good appointment, I think. The dr. was very nice, and very clear and concise, which I appreciated. I asked a TON of questions.

    She said that based upon the findings that the perinatologist has been seeing with all of the ultrasounds (hydrocephalus on the brain, and short limbs), her mind starts thinking towards a certain category of defects or syndromes that encompass hydrocephalus and short stature. Basically they fall under the broad heading of skeletal dysplasia (a group of congenital abnormalities of the bone and cartilage that are characterized by short stature). She did say that this is a guess, at this point, but the 2 conditions she mentioned were achondroplasia and Apert Syndrome (links below). The challenge with skeletal dysplasia is that the bones don't grow properly, and that seems to be happening with our baby, especially the head and skull bones. Therefore, the hydrocephalus is probably caused by the abnormal shape of the head/skull, which is caused by the skeletal dysplasia. Our baby is displaying somewhat of an abnormally shaped skull/head at this point - it is measuring short from front to back, so it is growing flat and wide to compensate for it, because the brain has to go somewhere.

    These 2 conditions are not death sentences in and of themselves - she said they see many people with these conditions every day - BUT, anytime you are dealing with issues of the brain and head, there are definite risks that the baby may have severe problems. As with anything, there is a wide range of severity.

    So, I don't have to see her anymore during the pregnancy....she will continue to feed her opinions to my peri as he does more ultrasounds, and if any new findings alter her opinions/diagnosis, my peri will let me know. The main things they will be looking at as the pregnancy goes on will be the hydrocephalus/brain/head, and the chest size (to make sure the lungs have enough room to grow). The hydrocephalus may get better, or it may get worse as the pregnancy goes on. She did say that her hospital does many surgeries to deal with hydrocephalus (shunts, etc.) so we are in a good place if that turns out to be the main or only problem. And at this point, the chest size is measuring normally, so that is good for now.

    She said that she or her colleague will want to see the baby after he is born to evaluate him, especially if they still haven't figured out a definite diagnosis by then (which I don't expect to have happened).

    So, it's more waiting and wondering, as I suspected.

    http://ghr.nlm.nih.gov/condition=achondroplasia

    http://ghr.nlm.nih.gov/condition=apertsyndrome
    Last edited by I'm_a_pepper; 12-05-2009 at 02:23 AM.

  7. #17
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    oopsie.. double post
    Last edited by I'm_a_pepper; 12-08-2009 at 01:54 AM.

  8. #18
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    Default 25w4d

    Cookie Party tonight...so tired. Getting ready for "3 Christmases" starting this weekend...we have company coming for the next 3 weekends. Whew!

    Tonight in the car, DS was talking about his little friend who has a baby brother (well, he's 1 y/o, but we call him a baby )....and all of a sudden he says "Where is MY brother?" (we haven't told him anything about the baby - was planning on springing that on him after the holidays). I laughed and said, "Would you like a baby brother too?" He said, "Mm-hmm". It was really quite cute, because he has never mentioned anything about a sibling before.

    I have another u/s with the peri tomorrow...will update after that.

  9. #19
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    Default 25w6d

    The appt yesterday was not so good. There are just so many problems with the brain. The dr. found some more problems with the brain yesterday - he was using all these big words that I don't remember now. And now he is saying the chest size may be restrictive of lung growth as well. Basically he is leaning towards a fatal form of dwarfism. He wants to send me for an MRI - that will tell us a lot more about what's going on with the baby's brain.

    The gist I got from today's appt was that if the baby does not die at birth or soon after, he will have severe mental and neurological issues.

    Although - we know, the dr. has been wrong before. I guess we will just pray for a miracle. More to come later.
    Last edited by I'm_a_pepper; 12-09-2009 at 05:43 PM.

  10. #20
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    Default 26w5d

    I've had a little time to process the appointment. It's just all so confusing. The thing that irritates me is that I specifically asked my dr. about the chest size at my last appt, and he said it was measuring normally, and if he had to make an educated guess, he would say the chest size is not going to be an issue. Now he's telling me that the chest size is a little small compared to the abdomen, and this along with the head measuring a little on the large side, makes him lean toward fatal dwarfism.

    I remembered part of the word he used, so I looked it up:
    Thanatophoric dysplasia. "This is the most common lethal skeletal dysplasia with a birth prevalence of about 1 in 10 000. The term derives from the Greek, meaning death-bearing and the characteristic features are severe shortening of the limbs, narrow thorax, normal trunk length and large head with prominent forehead. In type I, which is sporadic, the femurs are curved (telephone receiver) and in type II, which is autosomal recessive, the femurs are straight but the skull is cloverleaf-shaped."

    Our baby's femurs are not curved at this point, and the skull is not cloverleaf-shaped, but he will be on the lookout for these things, I guess.

    It is just taking a toll because the dr. says a different thing every time. And I know that he is only doing his job, and making a guess based on what he sees at each appointment, but for heaven's sake, why make me come every 3-4 weeks for this rollercoaster ride if there's nothing we can do anyway? Why not just do an u/s when I'm closer to the end, say 35 weeks or so, and make your best guess at that point? But then I got to thinking that it's probably better to be monitoring the baby in the meantime, for things such as the liver, kidneys, etc. to make sure everything else is developing and working normally.

    Anyway, I am scheduled for an MRI on Thursday the 17th. This will give us a much better idea of what the problems are with the brain. I am a little scared, as I've never had an MRI done before, but hopefully it won't be too bad.

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