Friday, April 27, 2012

20 Weeks & 2 Days: Bed Rest Day 2

Today is actually my full first day of being on bed rest. I should have been at work today with two of my best friends... but as it looks it will be many months before I return to work. I am not supposed to drive, they told me I am allowed to move from the bed, to the couch, to the bathroom and back. This is going to be a long ride that I do not know if I am ready for.

Yesterday I went to the Center for Advanced Fetal Care at University of MD Hospital. First they took me into an ultrasound room, there were two doctors and the ultrasound tech present. The ultrasound tech was nice, she explained to me everything she was scanning. She did a whole anatomy scan and checked again to make sure the baby is in fact a girl! She weighs about 11oz.

When they were finished, they told me they would be back in a few minutes they were going to go over the results, and that I may need another ultrasound. When they came back, they took me to another ultrasound room, where a different doctor (who I later learned is the fetal cardiologist) was looking over my chart. She then introduced herself, and I had over an hour of another ultrasound which the fetal cardiologist did herself, it was a fetal echocardiogram, looking at the baby's heart in detail. She was definitely honest and wanted me to consider the long term future of my baby, and the chances that she would need a heart transplant in 15 years, if she survived the first 3 surgeries. She told me about the pediatric cardiac surgeon they have on staff (who I did not get to meet yet, he was out of state), and how amazing he is and how when he isn't in surgery he is in the lab doing stem cell research on HLHS cases, and is awaiting FDA approval within a few weeks.

Next I met the Director of Obstetrics. He talked about the many detours and wrong turns that can happen when dealing with an HLHS pregnancy, birth, surgeries, and after care, and that it is very rarely a straight shot. I was going to ask, but he answered my question before I verbalized it. A baby at least 7lbs is ideal to survive birth and the first surgery. A 6lb baby has a pretty good chance, a 5lb baby has less of a chance, and a 3-4lb baby the odds aren't good at all. Next he factored in my high risk of pre-term delivery, since Emoree was 3lbs 15oz at birth due to my unicornuate uterus and now incompetent cervix. I had a cervix length measurement yesterday, and it was an alarming 2.0cm. It went down 0.6cm in a week. This is why I am now on strict bed rest. Nobody sugar coated anything to me, instead they gave me the grim realistic truth of what lies ahead.

I was there for over 3 hours yesterday. After meeting the Director of Obstetrics, the Fetal Cardiologist came back in the room and was very excited because their only other patient pregnant with an HLHS baby happened to be there that day, and she really wanted us to meet. We met, and talked for about 15 minutes. She is a sweet, very positive woman who is a little bit further along in her pregnancy than I am. She told me about her experiences so far, since she has known for awhile longer than I have about her baby's condition, and we talked for a bit which I found helpful.

After we left, we picked up Emoree from daycare and enrolled her in full-time 5 days a week, rather than the 3 days a week schedule she was on since I won't be able to care for her for a full day being on bed rest. That is an extra $45 a week.

When we got home, I immediately felt a little depressed. The reality of what bed rest meant was starting to settle in for me, not to mention the overwhelming day that I had.

Overnight last night was extremely difficult. I couldn't sleep and emotion started to take over. Can I really do this? Is it fair to Emoree? These are questions I don't have answers for...

Today I need to call my work's FMLA/short term disability insurance so that I start getting paid for my time off...

I have an OB appointment next Wednesday May 2nd @ 9:30AM for my glucose test, and it will be my first time seeing my OB since the diagnosis. Friday May 4th I have an appointment at the Fetal Care Center for a cervix length check, which I will now have done weekly. My next fetal cardiology appointment is Wednesday May 9th, at which time I hope I also get to meet the Pediatric Cardiac Surgeon.... my only foreseeable future revolves around doctors appointments...

I bought a preemie sleeper the other day, and also a pack of preemie diapers... but now I need to return them, because we won't get to use them either way. I can't bring myself to putting together a nursery. I'm not putting together the crib, decorating, or washing and folding baby clothes like I dreamed about doing for the first half of my pregnancy... I can't bear to do it. At this point, I really don't think Anya is going to make it. I can't picture her being a child and growing up at all. So I'm not doing any more belly pics, no more crochet projects (except for Emoree). This is the most difficult thing I've ever been through...

1 comment:

  1. Hi,
    I came across your blog by various internet searches looking to find other parents of heart babies. I am so sorry for what you are going through. I can understand a some of the emotions you are experiencing. I’m currently 30 weeks pregnant with a little girl who likely has heterotaxy syndrome and will require the same surgeries done for HLHS. Although I’m not limited to bedrest with my pregnancy, I understand what you are facing in terms of doctors appointments and big decisions. I am so sorry, I really hope that you can keep your spirits up. I felt the same way about the baby clothes and nursery. We are choosing not set up a nursery until after the baby is born. I have learned that it does help to document the pregnancy and keep a scrapbook of all the ultrasound pictures you will be collecting. If you ever feel like you need somebody to talk to my email is