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...
Friday, April 27, 2012
Thursday, April 19, 2012
19 Weeks & 1 Day: Gender Reveal
The post everyone is waiting for: Baby #2 is a girl! Her name is Anya Leigh. She is measuring just 3 days behind and ways approximately 9oz as of yesterday. However, the good news stops there.
I knew something was wrong as soon as my perinatalogist followed the ultrasound tech back into the room. She told me Anya has a serious congenital heart defect called 'Hypoplastic Left Heart Syndrome', and it is the worst case of it she has ever seen. The ultrasound tech did spend an extra long amount of time looking at the heart, but I didn't think anything of it because I was so excited to finally find out the gender. The easiest way to explain it is the left side of her heart is underdeveloped and they clearly showed me afterward on the ultrasound screen where there is no blood flow on the left side of her heart. Paired with the high risk of prematurity and the extent of her heart defect, this comes with a high mortality rate. She will probably be okay through now and when I deliver; the critical time comes from birth through her first surgery that will most likely occur at 2-4 days old to put a shunt in her heart and widen the aorta opening. If she makes it, she will have at least two more reconstructive cardiac surgeries, at approx 4-6 months old and again at 1.5-4 years old to re-route the flow of deoxygenated blood.
I am an emotional wreck. I barely slept at all last night, and waves of emotion come and go. Why did this happen? Everyone assures me it is nothing I did to cause this, but they really don't know WHAT caused it. From the beginning I have had that small feeling in the back of my mind that something wasn't right that I didn't tell anyone... turns out, I was right. I just woke up from a nap and feeling a tiny bit better, so I felt like it was the right time to type this and announce it to the world...
This morning we were back at the hospital and I had my blood drawn, genetic counseling, and an amniocentisis. I do not wish an amnio on anyone! It was extremely painful. Using an ultrasound as a guide, the stuck a long needle through my belly into my uterus to extract amniotic fluid to do a chromosone study. Since I have an extra small size uterus, they had difficulty getting the needle in the right place to safely draw fluid, so for what felt like minutes they wiggled the needle around in my skin to find the right place. Maybe it wouldn't be *as* painful for someone with a normal uterus and an appropriate amount of amniotic fluid, but for me it was torture. The results take 2-3 weeks to come back.
I also had them check my cervix length today, since we skipped that yesterday after hearing the news... my cervix has shortened slightly to 2.5-2.7cm, no precautions there but I go back in 2 weeks for another scan.
The next step is to see the fetal cardiologist. My appointment is next Thursday, April 26th @ 12:30pm at the Center for Advanced Fetal Care. I am not sure whether this appointment is just a consult, or if they will be doing a fetal echocardiogram the same day. This also changes the hospital at which I will be delivering, I was going to be at GBMC (where I had Emoree) but now I will be delivering at University of MD hospital because this is where Anya's heart surgery will be done as well. This also changes my OB, I am still seeing my current OB for now until they "officially" transfer my care, so I do not know who will be delivering my baby yet. I will also be seeing them every 2 weeks or so until birth, which means more doctors appts :-/
Belly pic I took Tuesday :)
19 Weeks: 190.2lbs (+ 0.6 lbs)
I knew something was wrong as soon as my perinatalogist followed the ultrasound tech back into the room. She told me Anya has a serious congenital heart defect called 'Hypoplastic Left Heart Syndrome', and it is the worst case of it she has ever seen. The ultrasound tech did spend an extra long amount of time looking at the heart, but I didn't think anything of it because I was so excited to finally find out the gender. The easiest way to explain it is the left side of her heart is underdeveloped and they clearly showed me afterward on the ultrasound screen where there is no blood flow on the left side of her heart. Paired with the high risk of prematurity and the extent of her heart defect, this comes with a high mortality rate. She will probably be okay through now and when I deliver; the critical time comes from birth through her first surgery that will most likely occur at 2-4 days old to put a shunt in her heart and widen the aorta opening. If she makes it, she will have at least two more reconstructive cardiac surgeries, at approx 4-6 months old and again at 1.5-4 years old to re-route the flow of deoxygenated blood.
I am an emotional wreck. I barely slept at all last night, and waves of emotion come and go. Why did this happen? Everyone assures me it is nothing I did to cause this, but they really don't know WHAT caused it. From the beginning I have had that small feeling in the back of my mind that something wasn't right that I didn't tell anyone... turns out, I was right. I just woke up from a nap and feeling a tiny bit better, so I felt like it was the right time to type this and announce it to the world...
This morning we were back at the hospital and I had my blood drawn, genetic counseling, and an amniocentisis. I do not wish an amnio on anyone! It was extremely painful. Using an ultrasound as a guide, the stuck a long needle through my belly into my uterus to extract amniotic fluid to do a chromosone study. Since I have an extra small size uterus, they had difficulty getting the needle in the right place to safely draw fluid, so for what felt like minutes they wiggled the needle around in my skin to find the right place. Maybe it wouldn't be *as* painful for someone with a normal uterus and an appropriate amount of amniotic fluid, but for me it was torture. The results take 2-3 weeks to come back.
I also had them check my cervix length today, since we skipped that yesterday after hearing the news... my cervix has shortened slightly to 2.5-2.7cm, no precautions there but I go back in 2 weeks for another scan.
The next step is to see the fetal cardiologist. My appointment is next Thursday, April 26th @ 12:30pm at the Center for Advanced Fetal Care. I am not sure whether this appointment is just a consult, or if they will be doing a fetal echocardiogram the same day. This also changes the hospital at which I will be delivering, I was going to be at GBMC (where I had Emoree) but now I will be delivering at University of MD hospital because this is where Anya's heart surgery will be done as well. This also changes my OB, I am still seeing my current OB for now until they "officially" transfer my care, so I do not know who will be delivering my baby yet. I will also be seeing them every 2 weeks or so until birth, which means more doctors appts :-/
This is how I originally planned on announcing gender, and I decided I still needed to post it since I worked hard on the template last week <3
19 Weeks: 190.2lbs (+ 0.6 lbs)
Thursday, April 5, 2012
17 Weeks & 1 Day
So this week I had two appointments.. my regular OB appointment on Tuesday, and my first cervix length check at the Perinatal Center on Wednesday. OB appointment went quick as usual, they took some blood, and I got to hear the heartbeat. The heartbeat was clear and strong! I made my appointment for 4 weeks from now, I will be 21 weeks. My OB also said the perinatalologist wants me to do the glucose tolerance test earlier than normal, so he gave me the nasty orange drink I have to drink 1 hour before my next OB appointment. That stuff is icky... it tastes like stale orange soda.
The Perinatal Center printed me a new ultrasound pic! Yay! They did a quick abdominal ultrasound before doing the cervix check. I wasn't too fond of the ultrasound tech I had... usually the ultrasound tech will talk to you and tell you what they are measuring... this girl stayed silent. I asked her what she was measuring, she said everything looks fine. Your cervix is closed (I'd hope so!). Not exactly what I was asking though... after the ultrasound she flipped through my file, mumbled to herself, and said she needed to check with the doctor, she would be right back. Way to make a pregnant lady worry, geez! She came back and said, "ok, see you in two weeks!" I asked again what did my cervix measure, and she said, "um, well, it was about 2.8cm." I thanked her and left. From research I've done, I know they wanted me to be over 3cm. between 2.5 and 3.0cm is a wait and see sort of zone... and below 2.5cm means bedrest and if before 21 weeks, a cervical cerclage. I hope to know more at my 19wk scan... including the baby's gender. :) Hoping for a nicer ultrasound tech next time!
I feel baby move every now and then, not everyday. One thing that makes me a little nervous is after being up and about all day, by the afternoon I start feeling light pressure in my lower abdomen. I go pee about every 45-60minutes to avoid putting pressure on my cervix, but I still feel pressure! It can get uncomfortable sometimes, like today. If it gets worse, I'll call my OB, if not I'll just mention it next time...
Now I just need to get someone to give me my p17 shot today!!!
17 Weeks: 190.0 lbs (+ 0.4lbs)
The Perinatal Center printed me a new ultrasound pic! Yay! They did a quick abdominal ultrasound before doing the cervix check. I wasn't too fond of the ultrasound tech I had... usually the ultrasound tech will talk to you and tell you what they are measuring... this girl stayed silent. I asked her what she was measuring, she said everything looks fine. Your cervix is closed (I'd hope so!). Not exactly what I was asking though... after the ultrasound she flipped through my file, mumbled to herself, and said she needed to check with the doctor, she would be right back. Way to make a pregnant lady worry, geez! She came back and said, "ok, see you in two weeks!" I asked again what did my cervix measure, and she said, "um, well, it was about 2.8cm." I thanked her and left. From research I've done, I know they wanted me to be over 3cm. between 2.5 and 3.0cm is a wait and see sort of zone... and below 2.5cm means bedrest and if before 21 weeks, a cervical cerclage. I hope to know more at my 19wk scan... including the baby's gender. :) Hoping for a nicer ultrasound tech next time!
I feel baby move every now and then, not everyday. One thing that makes me a little nervous is after being up and about all day, by the afternoon I start feeling light pressure in my lower abdomen. I go pee about every 45-60minutes to avoid putting pressure on my cervix, but I still feel pressure! It can get uncomfortable sometimes, like today. If it gets worse, I'll call my OB, if not I'll just mention it next time...
Now I just need to get someone to give me my p17 shot today!!!
17 Weeks: 190.0 lbs (+ 0.4lbs)
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