Friday, October 16, 2009

Our World: August and September 2009

Grab a cup of coffee because this is a long one... oh where to begin...
I became pregnant in April and had a funny feeling it was a girl. Maybe that was because I was wishing for a girl. However, Jay was wishing for a boy. Either way, we were excited for the news. We held off telling everyone until 12 weeks. That is approx. around the "weekage" where my rate of miscarriage dramatically decreases. We felt pretty comfortable at this point to tell close friends and family. Plus, sooner or later I couldn't keep up my non-alcoholic lifestyle. My friends would certainly start questioning it. I kept quiet at work until about 15 weeks and I finally told my boss and a couple close co-workers. I figured what is another week before I told anyone else so I kept quiet and just let the weeks pass by. I had scheduled my 18-20 week anatomy scan for 19 weeks. I thought by 19 weeks they could get a nice look at her to make sure everything checked out. I definitely was planning on letting the news out after this sono. At 18 weeks my friend Jen came back from maternity leave and I asked for a quick heart beat check to ease my anxiety. So, at some point on Wednesday, August 5th, I walked over to her unit and she took a peek. Our baby girl's brain ventricle was increased but not beyond normal but something certainly to keep track of. I was starting my last two weeks of my masters in nursing program on Tuesday, August 11th so I didn't need anything to get me worked up. I understood I should be aware of this issue but not flip out, yet! Me and Jay went to our sono appointment through Advanced Radiology at Franklin Square Hospital on Wednesday morning, August 12th. Everything looked beautiful but her ventricle was still high normal at 10 mm. The tech told me it was still measuring high normal, which was the same so I didn't completely freak out yet. I just started into my first week of my last class so I needed to stay focused. After 2 long, hard years of school, I couldn't screw it up now being so close to the finish line.
On Thursday, August 20th (Mamaw's Birthday!), we had our 5 month OB appointment. It was the usual appointment of blood pressure, urine sample, weight, check the fetal heart beat and speak with the doc. I explained my slight concern about her vents being enlarged to high normal. The doc wasn't too concerned but I explained to her what the JHH doc who spoke to Jen said so my doc though, what the heck, let's send you over to the main hospital to get a another detailed sono and consult with a Fetal Maternal Specialist. We made the appointment for Thursday, August 27th. Close to the worst day ever!
I had another 'off the record' scan on Friday, August 21st by Jen which showed her vent increased from 10 mm to 15 mm, not good. Needless to say, it was by far the worst weekend ever. I sat on the computer researching this issue and everything I could find related to it. I did laundry and research. I ate some food and researched some more.
Thursday, August 27th came and I took off work just in case I couldn't pull it together to go back into work. Good thought because I certainly couldn't have gone into work. The sono showed another slight increase from 15 mm to 17 mm. Everything else seemed to be fine, perfect. She had everything she was supposed to her in head but this increase vent size which was filled with fluid. We spoke with the doctor after the sono and he explained he was sure it was a diagnosis of aqueductal stenosis, which is a form of hydrocephalus. I had already researched this and was pretty familiar with it before meeting with him. He explained the prognosis is poor and he would have loved to be able to catch this at 16 weeks which would make termination a little easier. He suggested an amino to find out if it's chromosomal related but it wasn't like I really needed it because termination was close to the only option. I suggested a fetal MRI because I had read other stories about this diagnosis and a fetal MRI really shows if there is other anomalies and what could be the cause. He said he wouldn't really suggest it and is not sure where I could get it done. Basically... I could do whatever I wanted to do but it wouldn't change what is going on. I decided I was done with the conversation, I said thank you and I leave the building as quickly as possible. Not only did I want to run away from him but I wanted to run away from all of this like it was bad dream. Needless to say the rest of the day was not good in our world, mine especially. I felt pretty confident in what the doc told me but for some reason I wanted to just get another consult and further information so I scheduled another consult through JH High Risk OB where Somewhere in the week we were able to get an appointment with the pediatric neurosurg at JHH named Dr. Ahn. There was a cancellation and we got the spot right away. Dr. Ahn was down to earth and straight forward, which was great. I didn't want sugar coating but I also didn't want to talk termination either. I wanted the facts about this diagnosis and what we could expect if we continued the pregnancy. I wanted to know what others have went through, how they progressed, prognosis, etc... Unfortunately, we are dealing with a diagnosis that is rather rare, so rare only 1 in 1000 births have this complication. The research is poor. The journal articles are dated. The information on the net isn't enough. I explained I wanted a fetal MRI and he said good though. He would get us in as soon as possible which could mean a couple weeks. We left the office thinking we didn't have a couple weeks. I was soon to be 22 weeks pregnant and we had to make a decision about the future of this pregnany. Thank goodness for my connections at Kennedy Krieger (my job!) and a lovely doc I used to work with pulled some strings along with another nurse I think and got my fetal MRI scheduled fast. I guess somethings to actually come together. I have already typed a book so I won't go into how my first MRI was but let's just say baby girl cox better thank her mom when she is older and understands everything I went through for her. =)
Jen works, across the street from where I work. We had our next appointment on Thursday, September 3rd. We had a vacation scheduled for Friday, September 4th to see my family in Georgia and then fly to Miami to go on a cruise before I reached 24 weeks. Cruise lines or at least Royal Caribbean doesn't allow pregnant women who are 24 weeks and beyond. We were very excited for this trip as it would be our last vacation as just a couple. Unfortunately, with everything going on, we decided to cancel. There were too many unanswered questions and decisions that had to be made and I didn't want to push it off any further. So, as I said, we had our other consult scheduled. We first met with Cathy, the genetic counselor. She explained what we were dealing with and she explained a journal article about our baby's diagnosis giving us some prognosis information and looks into the future. We had a chance to talk about the situation and what our feelings were about it, something that had been hard for me and Jay to do because who really wants to discuss terminating your baby, no matter how far along you are. We explained we'd like as many answers as possible and would do whatever she recommends. She also had the results of the fetal MRI and she didn't go into detail but she did explain our baby had everything she was supposed to have in her brain, no other anomalies were noted except her vents are increased to now approx. 18.4 mm, bilaterally. That leads everyone to believe this diagnosis is aqueductal stenosis, like our first consult suggested. Cathy recommended an amino to test for infection that could have caused this or genetic issues. I was a little bit reserved about an amino as I know it doesn't go without complications. However, when Jay and I discussed it, we thought what else could REALLY go wrong. We might as well do it, so we did. I had a regular sono that looked the baby up and down and an amino. An amino is a needle through my belly and into my uterus to pull out some amino fluid for testing. Cathy said it would take 6-10 days for the results to come in but she'd call asap if she found anything out. I had a funny feeling this wasn't related to infections I picked up or genetic issues. I don't know why but I just felt that way. It was only a feeling so obviously I wanted to know for sure... We also had a fetal ECHO scheduled now to check for any heart abnormalities.
That weekend we found out the first results.. not related to infection and our rapid chromosome test was fine. Was that good? It depends on how you look at it... but I thought it was.
The next week, week of Sept. 6th, we had a follow up appointment with Dr. Ahn to go over our fetal MRI results. Our first meeting was very up lifting and we felt better about continuing the pregnancy rather than terminating. Based off the fetal MRI results, I thought it would be a rather similar follow up meeting. However, our prognosis statistics dropped a little, which made us a little uneasy. It was based off the true, confirmed diagnosis. She still had a good 30-40% of being completely developmental fine with no adverse effects of the extra fluid built up during pregnancy which means she would do everything a "normal" baby would without intervention, extra assistance or being behind at all. I thought that was still a decent percentage however; we still had a major decision to make.
On August 15th, we had a fetal ECHO to check the heart out. Everything looked great and there weren't any heart abnormalities seen on sono. That was another relief although I thought it would be okay, again. We also received our final amino results that day. They weren't as great as I thought they would be. It turns out our baby has a genetic translocation of chromosome 6 and 8. Interesting... because what the heck does that mean? It means that me and Jay had to give blood to be tested for this switch. It would be another full week of waiting, estimated 5 business days. This could be a completely normal finding in one of us and we passed it along.. it could be a new finding in her and it's still okay.. or it could be an issue. Another unknown... another question not answered. By this week my care had been transferred from Franklin Square to JH High Risk OB group. I had my nurse visit and my first OB visit. It was 24 weeks for me. Happy 6 months!
At some point later on we found out that I was the lovely carrier of the translocation of 6 and 8 and I passed it along to her. Isn't she going to love me. This finding in my means that I have a high change of reoccurring miscarriages and birth defects. If I get past 12 weeks with future pregnancies, I will have to get the amino to test for genetic defects. I have a high risk of messed up chromosomes making strange defects in future children. Not really what I wanted to hear because reproductive life for us will just be harder but I guess it's not the end of the world. We do have a nice chance of producing normal babies too and I have the chance of not even passing this along, that is a plus. It's just that it is a small percentage of not passing this along. Cathy suggested a micro array test that is an in-depth chromosomal analysis that will really give us good answers if this complication is genetic/chromosomal related. It's pretty pricey so we didn't decide right away.
On Thursday, September 24th I had another follow up sono. I missed all the sonos in between my typing but just to fill out in... her ventricles continued to increase about 1 mm a week but her head was staying within gestational age range which was great. There was no large fluid jump or head jump which is what we wanted... although we'd love for the vents to stop enlarging but 1 mm a week would be better thn 4-5 mm a week with extra pressure expanding her head. So, on Thursday Sept. 20th, I had a sono to re-measure her vents and head. I spoke with Cathy and she was going to look into insurance coverage with the in-depth test. Jay and I had a long conversation about all of this. We were having trouble coming to a sound decision together that we both felt comfortable with.
On Friday, September 25th, Cathy called to say our insurance covers the entire test. I called Jay and told him about it. We decided together that we'd go for the test. If the test came back normal, no findings, we'd continue the pregnancy. If the test came back funky, we'd end the pregnancy with no more testing or questions asked. I was actually excited for the first time. I felt we made a good decision that both of us would be comfortable with. I gave Cathy the go ahead and we had one last week of waiting. This time it was anywhere from 2-5 business days. Our results would be in anywhere from Tuesday, Sept. 28th through Friday, Oct. 2nd. I was on the edge of my chair everyday starting on Tuesday. The more I thought about it, the more I worried about the results. I didn't have hunch this time because I didn't know how to think. I thought.. okay, think positive, therefore, positive things will happen. But I also thought.. think negative, therefore you won't be let down too far when it doesn't come back good results. Then I thought think negative for reverse psychology, lol. I was a nervous wreck and hated this more than anything. As Friday morning approached I thought I would hurl out the car window since my stomach was in knots. I knew today was the day and we'd know the future of our baby girl. Wouldn't you know it... no results and another long weekend of waiting.
On Monday I just couldn't stand it... I had Jay give Cathy a call and she called back around noon with no results. She called in back about 2 hours later with great news... although she had no official documentation in her hands, she did just speak to the company and everything checks out normal. She'll give a call back if the true documentation doesn't say that. Jay called me right away and I thought I'd cry on the phone. I was so excited but at the same time I thought in my head, "Oh my goodness, are we ready to take this on?"
I explained to Jen that although I REALLY want to peek in on her every week, but I just had to stop. I was driving myself nuts checking on her poor little head and I had to concentrate on other things right now that I could control. So far, so good. Work has been extremely busy and Jay and I have been working on getting things done. We registered at Babies R Us, which was an experience! We also registered on, which Jay might not even know yet. We cleaned out her room, this week, for the most part. We have lots to do in a short amount of time! But, she'll just be a little peanut and have no clue what is done and what isn't done. As long as she gets fed, stays warm and gets her diaper changed, I think she'll be fine with whatever isn't done before she gets here.
Jay and I booked another vacation. We are heading to Key West for a week. I'm very excited to get away and finally have our vacation we were supposed to have the first week in September. I hate to leave work during the craziest flu season ever but I just had to take some time off before she gets here. I haven't saved up 13 weeks of sick/vacation for nothing. I received my annual flu vaccine and I gave in the H1N1 vaccine as I really do need all the protection I can get and pass it on to her while in utero. If she'll be in the NICU after birth for sometime, she has to have some immunity to fight off the germs. For any JHH NICU nurses reading this... I'll be the crazy nurse mom who is watching if you wash your hands and if you have the slightest snotty nose, cough or congestion, I will suggest you wear a mask, lol. I'm not the Employee Health Nurse for nothing.

As for names, she doesn't have a name yet but I'm trying to get to that A.S.A.P. As for delivery... Dr. Ahn said he wants to take her early no matter what... but her head progression will determine when she will come into this world. If her head stays relatively in size, like it has been, he'll push sometime after 34 weeks. If her head makes a large jump with lots of extra fluid, he'll push for right after 32 weeks. Either way, she'll be here in 2009 so we just have to get prepared a little earlier than expected. I hope she is home by Christmas no matter what. It'll be the best Christmas present ever. Stay tuned for more blogs about the progression of our pregnancy, more stories and pictures.
By the way, how many refills did you get reading this? I know my fingers lost about an inch around while typing this. I've included our recent sono pictures of baby. She has some chubby cheeks already. My mom and aunt say her head is shaped like mine when I was a baby. Beats me!

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