Wednesday, June 16, 2010

33 Weeks Pregnant

So, I figured it's about time I update this blog on Laura's condition and ALL of the new information I have received since the last time I wrote in the blog. Take a seat, because a LOT has happened since!

Catch Up!

Last time I left off writing in here, I was devastated and very discouraged. I felt as though I was fighting a losing battle after hearing all of the problems and negativities the doctor had put into my head. I was faced with the decision on whether or not to go through with the amniocentesis. I decided to go ahead with the amniocentesis, even though Jon was not comfortable with the procedure. I chose to go though with the amnio for many reasons. First of all, I wanted to be prepared for what lies ahead; prepared for any arrangements I would have to make to raise a Down syndrome child. Second of all, the stress I was going through was unreal. Not knowing what to expect when my child is born, really distracted me and my thoughts all day every day. Finally, I decided it would be best for the doctor's sake to know what to expect from my child when she was born (ex: whether or not she would make it full term, relating problems caused by genetic condition, preparing for other problems that are not visible on ultrasound). Although Jon was not comfortable with me getting the amnio done, he said he would still be there for me and support me during the procedure.

The Procedure

The day of the amniocentesis, I was a nervous wreck! I tossed and turned all night long and got no sleep. I feared the worst of what would happen. I was told, because I was 26 weeks pregnant, the procedure would be done in the ER at Women and Infants Hospital, so that if something was to go wrong, they could deliver the baby and bring her up to the NICU where she could have a chance of survival. Once in the room, I was warned of all of the risks, my worst fears, and again the procedure was explained to me. The doctors prepped my stomach and looked for a good spot to perform the procedure. This process itself seemed to take forever. Finally they were ready and inserted the needle. To my surprise, it was a little uncomfortable, but nothing compared to what I was getting myself all worked up over. The procedure itself was more nerve-wrecking than painful. When they were almost finished, I saw Laura start to reach with both arms and legs toward the needle, which seemed like no big deal to the doctors so I could not help but laugh to myself. Once they took the needle out, I had a small contraction, which is normal, and was monitored for a good half hour. After that I was sent home for the nerve-wrecking 3 day wait. Every time someone would call me, my heart would start to race as I prepared myself for the possible bad news. Finally, day 3 came and when I saw that it was the doctor calling, my heart nearly stopped. I sat down where I was and answered the phone. The "hellos" were all a blur to me, when suddenly she said to me..."I have some ascending news for you!" And instantly I felt a sigh of relief as she told me Laura was free from trisomy 13, trisomy 18, trisomy 21, and down's syndrome. Next she told me, that Laura is definitely a girl as they identified two X chromosomes. I was so relieved and at the same time upset with myself for not listening to Laura's kicks of encouragement she had tortured me with the weeks leading up to this particular day.

Appointments, Appointments, and more Appointments

After having the weight lifted off of my shoulders of the possible genetic/chromosomal problems, I went to two more appointments with the cardiologist. Dr. Ford the one who I have been seeing all along said she still sees a problem with the aorta, possible coarctation of the aorta, but can not for sure make the diagnosis. However; she did not agree with what the fetal specialist had diagnosed the problem to be, double outlet right ventricle. Dr. Ford thought it was best to get her colleague's opinion, Dr. Fiet, on what he thinks is wrong with Laura's heart. So about 4 weeks after I saw Dr. Ford, I went into see Dr. Fiet. Dr. Fiet was really nice. He had a good sense of humor and made me feel less nervous, just like Dr. Ford. Dr. Fiet's diagnosis, however; has a new diagnosis to add to drawing board. He came up with, in addition to there being a problem with her aorta, "Atrial-ventricular canal defect" or AVCD, which is instead of having a mitral and tricuspid valve, she has one big valve going straight across, causing there to be a big hole in the center of her heart, (Its tough to explain, but if you google it, it shows a better picture of the problem). This problem can also be easily fixed with open heart surgery. So after meeting with Dr. Fiet, I was scheduled for one more appointment with the cardiologist, Dr. Ford, where hopefully she can make the final diagnosis before Laura is born.


Also in the past, (don't worry, I'm almost all caught up!), was the baby shower! Last Sunday was the baby shower, the 13th of June. The baby shower went very well, as I was starting to stress out because the planning and preparing was not getting done until the last minute. However; my mom and Cass pulled it all together for an awesome day of memories. There was a lot of stuff I got, but also, a lot of stuff I still need to get. I'm not worried though because everyone tells me to buy the most important stuff right away and then buy stuff that I need as I need it. Sounds like a good motto to me! The only down fall to my baby shower was my dad and Maddie could not make it because they had a softball tournament to go to, which kind of got to me at first, but then I forgot that they weren't even there, during the shower itself, so its all good.

These past few weeks, I have definitely turned into a nesting pregnant woman! I cleaned my room from top to bottom, scrubbing the floors on my hands and knees, re-painted and designed my entire room all over again. Although its not done yet, after weeks of working on it, the room is very close to being complete!


So now that I am finally all caught up on this blog, I hope to continue to keep up with it, which should be easy seeming I spend my nights tossing and turning and watching t.v. due to these pregnancy hormones and beach ball sized tummy of mine. My next accomplishment, once my room is complete is to put together the nursery! I already got the bed set, a purple jungle theme, which is absolutely adorable! Soon I will go through the painting and scrubbing and designing Laura's room so that the room will be a complete nursery, awaiting Laura's arrival.

Before my next appointment, I must make yet another important decision: deliver in Boston or deliver at W&I Hospital. In the long run, the place of delivery comes down to my decision and that decision has to be made by Friday, June 18th at noon, when I meet with the cardiologist for the last time. If I decide Boston, the referrals will be made after the ultrasound and all of mine and Laura's care will be transferred to Boston ob/gyns and cardiologists. If I decide to deliver at W&I hospital, then once she is born, she will get sent to the NICU where they will stabilize her and access her. Once Laura is stable, she will be transported via ambulance to Boston Children's Hospital, where she will have the surgery. The pros of delivering at W&I hospital is I can be close to home and have my family near by for the support I will need. However; if I decide to deliver in Boston, then I will deliver at Brigham and Women's Hospital and once she is born, they will bring her to the cardiac intensive care unit where she will be stabilized, accessed and prepped for surgery. The pros for delivering in Boston: next door to the best pediatric cardiology hospital in the country, so if anything goes wrong, I will not have to worry about the hour ambulance transport ride to Boston that would be a factor if I deliver at W&I Hospital. Other pros are, I will be right next to my little girl at all times. The cons of delivering in Boston: far from home, not much family and visitors for support, and everything will have to be planned, nothing about the whole labor process will be normal for me. I know the decision is obvious but making the choice final is the tough part, knowing that once that induction date is set, there is no turning back. This is where I have to open up to change and accept the fact that my pregnancy is different from most and that I have to do what is best for my daughter.

Now that I am caught up, I will definitely post how the appointment goes Friday with the referrals and any new diagnoses.

P.S. Laura is still kicking strong and topping the scales at 4 lbs 3 oz! According to the last measurement of her size, she is a week and a half ahead of where she should be, which is excellent news for a fetus who doctors term "sick." Laura is still showing them whose boss and giving them a run for their money by moving like crazy, playing tag, when they try to figure out what is going on with her heart. Now that is my little girl!

P.S.S. I have to start breaking out the bows and hair ties because according to the last ultrasound, Laura already has hair growing on that little head of hers!

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