Thursday, July 22, 2010

7/22/2010 Update

First, I want to say thank you to everyone for the love and support that you have shown us. You truly are wonderful friends and family and your words of encouragement and support are really helping us to get through this tough time. We are really grateful to have such a great circle of friends and family. We want to continue to share our experiences and progress with you, so that you will know how Brady is doing. So I will continue to update this blog as we learn new things.

Yesterday and today were much better days than Monday and Tuesday. Yesterday, Paul stayed home from work because Tuesday was really hard for me being home alone, so I asked him to stay home with me yesterday. We spent the morning doing research on Trisomy 13 and we made an appointment with a genetic counselor and doctor at UNC who specialize in these kinds of diagnoses. We went to lunch and then ran some errands. It was really nice to get out of the house and just focus on normal, every day things. The rest of the day, we just spent time together doing normal things around the house and doing some additional research. I also bought a journal to write letters to Brady, so I wrote him a letter last night and read it to him. It was really therapeutic and helped me connect with him more. I've also been talking to him more, because I really want to focus on the fact that every day I have with him in the womb is a day that I'm spending with him, so I want to make the most of it.

This morning, I measured my stomach and I was almost 37". Since I have been hovering around 36" for the past 2 weeks, it was nice to see a change in the right direction. Hopefully this isn't temporary and I will continue to measure 37" and even more as the weeks go on. That will make me feel better about Brady's progress because it will indicate that he is growing.

Today, I spent a lot of time on the internet researching T13 and the abnormalities that Brady has. I joined a Yahoo group for people that have or have had children with T13, and I got some good information. A couple of people mentioned that there have been situations where the doctor misread the ultrasound and that the baby didn't end up having a defect that the doctor thought he saw on the ultrasound. But there have also been situations where the baby had defects that were not seen on the ultrasound. So even though the doctor saw certain abnormalities on Brady's ultrasound, it's possible that they weren't really there, or that they could fix themselves before Brady is born (or they could get worse). So there are a lot of unknowns still, and we really won't know the full situation until Brady is born.

One thing that I am concerned and baffled about is that Spina Bifida is not a common abnormality caused by T13, so I don't understand why he would have it. It may be that it just happened unrelated to T13. We may get a second ultrasound after tomorrow's consultation in order to get a second opinion. And of course, I would love to see Brady again. It was so awesome to see him on Monday, and I would just love to see him again :) Because things could change so much over the next several months, I definitely want to continue to get ultrasounds, maybe once a month. We'll have to see.

After reading all the stories on the internet (http://www.livingwithtrisomy13.org is a wonderful website with a lot of information and stories), my attitude has become much more hopeful and positive. I know that Brady might not make it to his birth, but I'm really just trying to focus on what we can do to help him if he does make it. We are also going to make plans to handle the situation if he doesn't make it, but I'm really trying to stay positive and hopeful. I know that God has a plan for him, but of course we don't know what that plan is, so we are just praying that we have as much time with Brady as possible and that Brady doesn't experience pain and suffering throughout his time with us (in the womb and after he's born). We are also praying that we are able to receive the best advice, care, and treatment from the professionals in the area. We are so grateful to be in an area with such great hospitals, doctors, and specialists, and we are hopeful that they will be supportive of our desires.

So, that is the update for now. I will give you all another update after our consultation tomorrow (we are going to Virginia Tech for the weekend, so I will try to post another entry sometime this weekend). Hopefully we will get a lot of good information during our consultation and possible ultrasound.

Love you all :)

3 comments:

Monica said...

I love how positive and focused you are staying. And I love love love that you wrote and read a letter to Brady :)Thank you so much for sharing your journey with us. <3 to you, Paul, and baby Brady

Steve said...

I just wanted to say that I don't know of two stronger people in my life then the two of you. Your love of life and each other is palpable to all those you touch. If there is anything you could possibly need please don't hesitate to call. I just want to say I love you guys.
Steve

P.S Fine, I love Macho too. Goofy pup and all.

Christie said...

You are and continue to be in our thoughts. Michael shared your blog and the documentation of your journey has been an honor to read and follow. What amazing parents little Brady has...such a lucky boy! I worked alot with Trisome parents at my last job...hold onto one another and keep communicating and loving each other everyday. You are both amazing...as is Brady!!

Christie and Michael