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Archive for June, 2009

Hospitalization

I wanted to let you guys know I will be going into the hospital on Friday, and I’ll be there until the baby is born. They will give me steroid shots on Friday, and then another set 24 hours later, and then if I make it to 30 weeks I’ll probably get them again.  The purpose is for lung development in preparation of a premature birth.  They are not going to let me go past 34 weeks unless things change, but for now, they said they are setting small goals, so are current goal is to get to 28 weeks because the chances go way up for baby at that point.   I’m between 25 and 26 weeks now.  The reason we are waiting until Friday is so I could wrap things up at work and pack some entertainment for myself! We all decided that the baby has made it this far, so a few days wouldn’t hurt. I hope that is true anyway! My peri won’t be back at the hospital again until Friday, so if I wasn’t going in tonight, it’s easier to wait until then.

We did get SOME good news – the baby has gained an extra week of growth!  So the little one  is now only 2 weeks behind. The baby is weighing about 1 pound 3 ounces which is about 587g.  However, everything else remains the same. With the fluid alone, the doctor said the baby has about a 50% chance of lung development, but we still don’t know about how these other issues are going to effect the outcome. The cardiologist said that the heart problem won’t contribute any less to the baby’s survival chances – the heart problem is manageable. It still will require open heart surgery on an infant – not an exciting thing – but that’s the least of our worries.

I’m terrified in so many ways – I’m terrified of those stupid steroid shots, and still terrified of all that could go wrong. I’m terrified that short of a miraculous infusion of amniotic fluid, I’m going to have a preemie baby. But at the same time, I feel like we’ve come a long way since our appointment 6 weeks ago when we got the big scary news. I have more hope than I ever have had in that 6 weeks that everything is going to be ok, even though I know the doctors are still only giving this baby a slim chance. But a slim chance is still a chance. And now, we will be able to say we are doing everything we can, and the rest is in God’s hands.

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I am back from my visit with the pediatric cardiologist. Fortunately, we did get some useful information.

The baby does have holes in the AV Canal – both in the upper and lower chambers. However, they are easily fixed with surgery.

This particular heart defect has a 25% association with Down’s Syndrome. We were also informed with the low (or zero) amniotic fluid, and my baby’s small size, combined with the heart defect, I am definitely at a greater chance for having some sort of chromosomal issue (we already knew this). However, it is impossible to say which one is most likely. As mentioned above, this particular heart defect is associated with Down’s, but not with Trisomy 18. However, Down’s babies are usually normal in size, while my baby is small. Trisomy 18 babies can be small, but usually have too MUCH amniotic fluid, and that is definitely not my problem. So, nothing fits perfectly into any category.

Most importantly, this doctor’s visit was extremely helpful in our decision about hospitalization. While my baby’s heart defect is easily fixed, they could not do the surgery until the baby was at least 2500g, but preferably closer to 3000g. 2500g translates about 5.5 pounds. Further, if the baby were born too small with this heart defect, the likelihood of the baby living would be very slim. So, unless things change, hospitalization at 500g is probably not a feasible option.

I also talked on the phone to my OB, and he mentioned they discovered from my last ultrasound there are definitely kidneys and a bladder. While that’s a good thing, it doesn’t change the fact that there is no fluid, which seems to be the biggest worry right now. My OB really stressed the seriousness of it.

My next appointments are on 6/30. I’ll be seeing the peri and then going to see the cardiologist. I’ll be following up with my OB the following week.

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6/16/09 Ultrasound

I’m home from today’s ultrasound, and there isn’t much new to report.  The baby is growing, but still 3 weeks behind.  The amniotic fluid is still missing so, as usual, it’s really hard to get a clear picture of what’s going on.  The fetal heart rate was at 138 bpm, which is down from previous visits, but still a healthy range.

The baby was not enjoying the ultrasound today – he/she kept squirming and moving around!  I’m feeling movement more and more, and I am grateful for it as it lets me know my baby is hanging in there.

I made an appointment with the pediatric cardiologist, and he will hopefully be able to give us some insight into what may be going on with the heart.  Unfortunately, he won’t be able to get a better picture than anyone else without the fluid being there, but we are hoping he will be able to tell us something.  Any information we can get will be useful to us for the decision we will be making soon regarding hospitalization.  As of now, the baby is still too small to even consider it as an option – the baby is 350g, but would need to weigh 500g to survive outside the womb.

I was supposed to meet with the perinatologist to discuss hospitalization in more detail tomorrow, but we cancelled because at this point there really is nothing to discuss.  The baby needs to get bigger first.

The doctor did tell us today a baby with no amniotic fluid has about a 40% chance of survival.  However, we do not know how the other issues that may be present will affect the outcome.

I asked the perinatologist about amnioinfusion, which is where they inject fluid into your uterus, and about steroid shots, which they use for lung development in babies who are at risk of being pre-term.  As far as amnioinfusion goes, they said it wasn’t anything they’d offer in my situation.  It’s usually used during labor for babies with low fluid, but studies haven’t shown it to be very useful in situations like mine.  They did say if I went into the hospital, they would definitely start doing steroid shots, but it’s still too early to do that.

My next ultrasound is 6/30.  I may have a cardiologist appointment this Thursday – it is scheduled, but we’re not sure if Nathan can be there, so we may have to reschedule for a better time.

That’s all I have to report today.  Please continue praying with us for a miracle!

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I had my ultrasound with the perinatologist today, followed by an appointment with my OB.

First, the good news. The peri is pretty sure he saw at least 1 kidney, so that’s a positive. Also, the heart rate is still good at 154 bpm.

The ultrasound tech made a guess on gender, but the baby’s legs were so close together she said it was only a guess. But she guessed boy.  We’ll see if she is right.

Now for the bad news. There is still basically no amniotic fluid. It’s no worse, but no better. Actually the peri said there is no way it could be any worse because at .52 cm, it’s basically sweat. So they were still not getting very good pictures. He did say that he has seen babies go the whole time with no amniotic fluid and be ok. But that’s not always the case.

I’m not sure if this is really bad or good, but the baby is still measuring 3 weeks behind. This means the baby is growing on track, which is a good thing. It was 3 weeks behind 2 weeks ago as well. However, it is still measuring small, so I’m not so sure how good that is.

They are also pretty sure there is a heart defect. Based on the way blood is flowing across the heart, they are thinking there is a hole – I think they said it was in the AV canal. At this stage, it is too small to say how serious it is, but in a few weeks, if the baby continues to grow, I will be going to a pediatric cardiologist for an assessment.

That’s about all in terms of things they saw. Now for my decisions:

1. I need to decide if I want to do a cvs. We can’t do an amnio – there’s not enough fluid. The cvs would ONLY give us information if the problem is chromosomal, but we don’t know that it is. We really don’t have any idea what is wrong or how severely wrong it is. We only know something is wrong, so cvs is only worth so much.

2. Once the baby is measuring 24 weeks, which is the earliest they would do an emergency c-section, I can choose to be hospitalized. They would strap something on my stomach so the baby would be under constant monitoring, and if it showed any sign of distress, they would do an emergency c-section. If they could save the baby, they would, but if the baby has a chromosomal disorder, they still wont’ be able to do anything for the baby. Other things to consider are the risks to me – the biggest of which is blood clots from laying in a hospital bed all that time. I’d also be facing the possibility of 16 weeks of going crazy in the hospital bed if the baby never goes into distress.

3. I can choose to go about my regular activities and continue to go to bi-weekly or at least monthly ultrasounds. The understanding would be that I might go in at some point and the baby would be dead. Or the baby might still make it full term, and I’d go into labor later on.

Right now we are sort of leaning against the cvs. As far as hospitalization is concerned, I think we’re going to wait and see what the cardiologist says and my next ultrasounds show. If things look better, and the baby has a good chance at life, we might choose that route. However, I don’t see myself choosing hospitalization until closer to 28 or 30 weeks, because while babies at 24 weeks can definitely survive, I’m not sure how good those chances are, especially with all the other potential issues my baby may be facing. If things don’t look any better and we’re not looking at good odds, we probably will just take more of a wait and see approach, and maybe go into the hospital closer to 35 or 37 weeks.

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I got my quad screen results, and I’m even more confused than before.   I have no idea what to make of this, how much hope I should hang onto, etc. The genetic counsellor kept referring to doing an “autopsy” as if this is a lost cause already. I know they have to prepare us for the worst, but she referenced it several times, and I get it how serious this is.  I don’t need to hear the word “autopsy”.

Well, here are the results. First, my risk for Down’s Syndrome went from 1 in 915 based on my age to 1 in 409, which is a negative result, and about the risk a 35 year-old would have (I’m 27). So that is probably not a concern, though I would rather be dealing with Down’s than anything else I’m looking at right now. My risk for Trisomy 18 went from 1 in 1,948 for my age to 1 in 275 (also the risk of a 35-year-old). That is also considered a negative result. My risk for spina bifida is 1 in 5000, so that isn’t the problem, but we never thought it was.

The test measures AFP, estriol, HCG and inhibin A. I’m not really sure what each of these things do – I need to do more research. However, my AFP is low – it measured 40% of normal.  . My estriol is so low, it was unmeasurable, which means it was less than .25% of normal. My HCG is normal – it measured 97%. Inhibin A is low at 67% of normal.  However, it is good for Inhibin A to be low.   The big issue here is low estriol.

Low estriol can point to several issues. One is malfunctioning placenta, but I’m pretty sure they said my placenta is working fine.

Another issue is with steroid production in the body. This could indicate a simple scaly skin problem, which is not likely because it is hereditary, and it’s not in my family. It could also point to a disorder called Smith-Lemli Opitz. With Smith-Lemli Opitz, a baby could live a normal lifespan, but with a LOT of problems, including small head, average to severe mental retardation, heart defects, cleft palate, extra finger, webbed toes, ambiguous gender, etc. Of course, not all of these may be present. There’s a 1 in 120,000 chance a baby will be born with Smith-Lemli Opitz. Amniocentesis can determine this.

Another issue could be a skull that’s not formed, and my baby’s skull is fine, so that’s not it. Trisomy 18 is another possibility, as I mentioned above, and finally, it could point to simple gender ambiguity, though that is not likely as it doesn’t explain all the other things on the ultrasound.

So what we have is more possibilities and no answers. They can see about doing an amniocentesis if the fluid levels increase by Tuesday, but I don’t know if there is a point right now.  I’m also not willing to put my baby at risk all for information that really wouldn’t help us.

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What should have been one of the most exciting days of my pregnancy (gender u/s)  has turned out to be one of the worst days of my life. I don’t even know how to describe what I’m feeling.

When I went in for my appointment the ultrasound tech checked the fetal heart rate first. It was a strong 165 bpm. That’s where the good part ends. When she saw how little amniotic fluid I have, they immediately called perinatal and got me in for an emergency appointment 3 hours later. It was not a good 3 hours.

I got to my perinatal appointment and had another higher level ultrasound. It confirmed the low amount of fluid, and revealed my baby is very underdeveloped (measuring about 15-17 weeks, depending on the part of the body), there is a concerning spot on the brain, and they were having trouble finding the kidneys. The doctor said he wasn’t sure if there was a kidney problem or if he was unable to find them due to not being able to see much due to so low fluid. They also said that with so little fluid, the baby’s lungs will have trouble developing.

They are thinking triploidy or trisomy 18 are most likely, neither of which come with very good chances of survival. They didn’t rule out Down’s Syndrome either, though that isn’t as likely because usually those babies measure normal in their heads. My baby’s head is really small.

The only thing I can do now is go in for an amnio or CVS to get better results. But there’s nothing we or they can do. I don’t know if I want the tests or not.  Nathan thinks knowing would be nice, but I’m not so sure. I just don’t know what to do at this point, and don’t really want to think about it. This really has been my worst fear – making it halfway through a pregnancy only to find out something was wrong. I could have a stillbirth, or my baby may die within the first year of life. Or maybe a miracle will happen. All we can do is wait and see.

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The purpose of this blog…

I decided to start this blog to keep everyone updated on the progress of my pregnancy.  With such frequent appointments, it is very difficult to keep everyone informed of what is going on, so rather than explain the situation over and over, I thought a blog would be a good place to update everyone at once.

***Revised Below September 2009***

Though the purpose of this blog was originally to keep people informed about my pregnancy, I have decided to keep it open as a place for me to share my feelings of loss, both as therapy to myself and in hopes that I can help others in this situation. I also am doing this in honor of my daughter, whose memory I want to keep alive in any and every way I can.

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