Monday, February 4, 2013

Baby B

For those of you who don't know (I can't imagine there being many of you) Bob and I hit the jackpot on our second round of IVF with triplets. We were nervous and excited and in shock. It has turned out to be even more of a roller coaster than we were expecting.

For the first few weeks everything was going great, I was puking my guts out and the babies looked good! Then things started to be less than ideal. Here is the breakdown of some of the ultrasounds:

12 week ultrasound: All the babies look good, except that they think there is a possibility that Baby B had clubbed feet, but that she was still so small that it was hard to tell.

14 week ultrasound: Babies are doing well, but Baby B is diagnosed with a pretty severe bi-lateral cleft lip and palate (okay no biggie, we've done that before) and they aren't so convinced about the clubbed feet. Also she has CPC (choroid plexus cysts) which can be totally normal, they only worry about them if the baby has other problems, and all 3 babies had CPC's. They were also worried that she might have some kind of muscle contracture disorder. Basically she wasn't straightening her arms or legs as much as they would like to see. Also she was measuring smaller than her siblings.

16 week ultrasound: They had us meet with a genetic counselor and she told us that she was pretty concerned about Baby B. She was thinking that Baby B possibly had Trisomy 13 which is a lethal condition and most babies die at birth. It was a little hard to hear, but we were looking forward to the ultrasound. They recommended that we get an amniocentesis to check her chromosomes, because if we knew she was going to pass away, they would not put the other two babies at increased risk to help her. For example, lets say I am 29 weeks along and Baby B has stopped growing. Ideally they would make me deliver the babies to give Baby B a better chance of survival, even though that is really early for them to be born. If you know she is not going to make it no matter what you do, you leave the babies in for as long as possible to allow Babies A and C the best chance of survival. Hard to think about, but having three of them in there really complicates things.
The ultrasound went much better than expected after the news we had just been given. She still had the cleft (which runs in my family) and they decided that only the right foot was clubbed (generally if it is associated with a syndrome it affects both feet) she still had CPC's and they felt like she was moving her arms and legs better. We also found out that Babies A and B were girls and that Baby C was a boy! She was still the smallest of the 3, but seemed to have caught up a little bit. The doctor said she felt that Baby B had Trisomy 18 which is also a lethal condition in which most babies die at birth. At the end though she said she felt pretty "wishy washy" about it. We decided to put off the Amnio until our next appointment for insurance reasons. They said the only reason we would need to do it that day was if we were going to "selectively reduce" the pregnancy, which basically means kill Baby B and we certainly weren't going to do that.

Bob and I went home with pretty mixed emotions. A lot of praying for the best, but planning for the worst. I felt pretty confident that she did not have any chromosome problems, Bob was much less confident. It was a long wait for our next appointment, but the holidays were a good distraction.

20 week ultrasound: Everybody still seemed to be doing fine. The girls still had CPC's but C's were gone. Baby B still had a cleft (it's not like they go away) and her right foot was clubbed. The doctor said her left foot was not clubbed but did not "look normal". We had a different doctor this time, and she was pretty tight lipped, we had to pry a lot out of her it seemed. She was definitely moving her arms and legs plenty so they were no longer worried about muscle contractures. She was again smaller than her siblings they were both 13 oz and she was only 11oz. It was definitely something they were concerned about no matter the outcome of the amnio. Everything else seemed fine, her heart, kidneys, intestines all looked great (those often have a lot of problems with the chromosome problems). At the end of the ultrasound we did the amniocentesis and were told it would be 10-14 days before we got any results. I thought things went pretty well, but this doctor said she was pretty sure it was a chromosome abnormality.

While we awaited the results, my sister-in-law lost and delivered her sweet little boy at 25 weeks. Our hearts broke for them and we prayed that we would not suffer their same fate. They think that he had a CMV (cyto-megalo virus) infection. The day of his graveside service (Monday) we got the wonderful news that Baby B's chromosomes looked completely normal. We finally felt like we were in the clear and could buckle down and prepare for her upcoming surgeries, having three babies and one with problems, we even kind of settled on a name for our sweet little girl! (Eliza and call her Ellie) Bob headed off to Florida (Wednesday) for a class and I went back to the doctor the next day.

23 weeks 5 days ultrasound: Babies A and C looked great. They are growing well and completely healthy. When they got to Baby B and started measuring her head and abdomen I was getting a little nervous. Everything kept saying 19 weeks 1 day, or somewhere in that range. It is really scary when one of the babies is not growing as well as the others, and I really didn't want to have all of these babies come really early. The other babies had been measuring around 24 weeks, so this was a big difference. Then she went to measure the heart rate and could not find a heart beat. She stepped out of the room to get the doctor and started praying that somehow she was wrong, even though I knew she wasn't because Baby B was so small. The doctor came in apologizing for our loss, asking why Bob wasn't there, and explaining that the baby had probably died shortly after our last ultrasound because she wasn't much bigger than last time. She said we would never know the cause of death because that would require an autopsy be done now, and that is not possible when there are two other babies that have to stay in me. She said she thought it was unlikely that the amnio caused her death, because usually when that is the case it is due to infection and you lose the whole pregnancy. I personally think that Baby B was clearly struggling and that even if the amnio was the straw that broke the camels back, it would have happened eventually.  I had Ezra with me at the doctor and kept a brave face until about the time we got to the car. I strapped him in, gave him is Kit Kat for being good at the doctor, and turned on the radio so he would be oblivious to my crying, I wasn't ready to talk to him yet.

It was a hard day, especially with Bob gone. I had to break the news to him over the phone and we both cried, just wishing we could be together. I left Ezra with my sister-in-law for the rest of the weekend and cried the whole way home. I called my Mom on the drive (don't tell, that's illegal here) and Bob told his parents. By the time I got there I had pretty much gotten my act together. I really hate crying in front of people and sweet Bruce and Alicia (my in-laws) hardly made me shed any tears. Friday I did some shopping with my other sister-in-law, which was a nice distraction and had the rest of the day to myself. Saturday felt like forever with Bob and Ezra not getting home until late that night, but we were doing pretty good. I got really nervous going to Stake Conference that night, because I didn't want to talk to anyone. I feel like being pregnant with triplets has given me some kind of celebrity status, and everyone feels the need to come talk to me. I felt okay talking about it at that point, but I still don't feel okay having to tell people about it, it's like living it all over again. I'm crying just typing this!

The good side of all of this, is like Bob and I keep saying, it's like we got the easy way out. We no longer have to deal with surgeries or braces, two babies seems infinitely easier than three (I know those of you who have twins will tell me it is still no walk in the park), I can breastfeed them both at the same time, and only pump when I want to. I can be so much more independent, and Bob should be able to get more sleep. I should be able to carry these babies longer, now that Baby B is not going to take up any more space, which means they will be bigger and healthier at birth, and if we are lucky we can completely bypass the NICU stage we were planning on.

All that being said though, I did not want the easy way out. I want my baby back with all of her challenges. Right now the grief comes and goes, and I know it will be that way for a while, I am a little scared for the delivery because I am afraid it will bring on a whole new wave of grief. I just try to think of her up in heaven having a great time with little Crew! I think they passed away within about a week of each other. Crew was 25 weeks and my sweet little one was 21 weeks! We miss her so much!

Photo: I found out this morning a friend of mine just lost her baby to fetal hydrops, the same thing we lost our sweet baby Anna Belle to 3 years ago - it hurts :( my heart just breaks for them as I have an idea of what they will be going through in the coming days, weeks, months, and years. Sending lots of love and prayers to their family that they will feel peace. I put this picture and quote together this morning, but I have no idea who originally drew this beautiful image to give them credit - anyone know?

***Please feel free to ask questions. I really am okay to talk about it, now that you already know.