Whirlwind

Sorry, I have gotten more than my share of messages with people worrying about me because I havent posted. Sometimes I cant think of what I need to say or how to say it or Im coping with something new I've learned.

So I have had 4 appointments since last posting. Adam and I met with a neonatologist at Baptist a couple weeks ago. She was very nice and went over several statistics with us. We got a tour around the NICU again and saw some really small babies. It's pretty amazing how small 1 pound looks. She went over everything we could possibly think of asking. Its way to much to go into detail but from what I thought would be a negative experience ended up a positive one. Also, a girl I graduated with works at that NICU and has offered to sign up to be the babies nurse when they come. I thought that was really nice and she is one that I would trust with my babies.

Later that same day, I went to see Dr. Cassidy. We went over my high risk notes that had been sent over and also talked about what the neonatologist had said. We decided that I would be admitted to the hospital at 24 weeks as discussed before and at that time I would start my steriod shots and so forth. She also informed me at that time I would be on bedrest with bathroom privledges. Wasnt expecting that much restriction but what ever is best for them. She was happy with everything else and decided she would see me every two weeks until I go into the hospital.

That Friday, I went and saw the high risk group and it was just my ultrasound day. Everything was fine.

Well, this past Friday I had my 20 week appointment with the high risk group. I had my ultrasound. Baby A whom is Jackson, was right on target. He is weighing 12 oz which is normal for 20 weeks and measuring well. There were no visible anomolies with him. He looked like a normal baby which is always good to hear.

Then, we start to look at Baby aka Joshua. He is still a little bit smaller, he is weighing 10 oz. However, the doctor is not concerned about this, he said it is expected for one to be a bit smaller and he is no where near being concerned about twin-to-twin transfusion syndrome. However, they did after close examination by the ultrasound tech and the doctor himself find that they are suspicious of a heart defect. The defect is a VSD (ventricular septal defect.) This is a hole between the left and right ventricles of the heart. There are two types: muscular and membraneous. Ours he belives is membraneous, which is the most commmon, but not the most easily treated. Apparently, if it was the muscualar kind, a lot of them heal in on thier own. Dr. Collins said this type of defect is rarley found before birth because it is so hard to locate. He said that he doesnt want to label him with a defect yet and would like to recheck it in two weeks, to see if they still see what they think they see. He didnt seem suprised however, as he said that identical twins in general carry a high risk of having some kind of defect. He was very positive and said that kids with this defect go on to have normal lives pending treatment. Therefore, if this VSD is still visible in two weeks we will be reffered to pediatric cardiology at Vanderbilt.

This finding could basically change everything.
A. Hopefully, its not there in 2 weeks. Then we can move on with our original plan of admission at 24 weeks at Baptist.
B. If it is there, then hopefully the cardiologist will think it can be evaluated after birth because hopefully it is small and not critical. That way we can still be a Baptist and deliver there and possibly transfer him after that.
C. The cardiologist could determine that this baby will already be delivered prematurley with a heart defect and therefore would need to be born into the Vandy NICU for close observation and treatment. If this is the case, I have to be admitted to Vandy and deliver there. I wouldnt know any of the doctors as the physcians currently caring for me do not have practicing privledges at Vanderbilt. So I would basically be admitted right away into a place I wasnt preparted to be, with doctors I have never met. That is scary.

This has been incredibly stressful. One for that fact is in two weeks I will be 22 weeks and am supposed to be admitted to the hospital at 24 weeks. So, are they really going to be able to get me into the cardiologist before that time to evaluate and make a decison. Adam and I have to think about both babies and will not except me not going into the hospital at 24 weeks, so they would have to figure something out. A heart defect is serious but not as serious as cord strangulation and them not surviving inside of me. So, we will demand I am in a hospital at 24 weeks. Also, through the monoamniotic website forum, I have read horror stories about Vanderbilts antepartum unit (the unit where I will be living until babies are born) and about them not paying close attention to the monitors and therefore having a pair of monoamniotic twins die. That is scary and unacceptable in my eyes. I have complete faith in the Vanderbilt Childrens but I dont have complete faith in the maternity part, which is the part that could save thier lives to begin with. I feel so comfortable with my doctors and Baptist with the care they can offer me. I just feel like this journey has been so stressful with not knowing how our babies are at any given second and feeling ok that we at least had a plan we felt comfortable with and now it is all up in the air. This all happening 3 weeks before viability. Also, the internet has freaked me out because in some articles about VSD's it can be associated with syndromes such as Down's. That scares me a lot. It wouldnt change anything in my mind or heart but it is still very scary. Now, the doctor said nothing about this, it was all internet, and me being who I am freak out about it.

All I can do right now is pray that Joshua's heart is completely fine and take each day as it comes. Because Jackson and Joshua still arent promised to me and we still have a long road ahead to get to viability and then NICU. My heart just is all over the place because all that really matters to me is that they make it hear and I get to hold them in my arms forever.

Adam and I are doing okay right now. I have had a few breakdowns since this news but I realize there is nothing I can do to change anything that is happening so I just need to look toward the positive side. I do have to say I love to feel them move in me even though sometimes it catches me of gaurd when they kick hard. It of course worries me to death when I dont feel them as often as I think I should be.

We have see Dr. Cassidy again this week and just a fast scan on Friday. Then the determining scan of the heart the following week.

Thank you so much for caring and praying for us. I think the only thing that gave me the courage to post today was the outpour of messages worrying about us since I havent posted. Thank you for your support.