June 30, 2012

This long post will contain my most recent and relevant thoughts about Baby Hudson. It will be long because I think I've thought every thought about Spina Bifida (SB) I can think over the past week since I've found out about our sweet Baby Hudson's condition. There is an incredible wealth of knowledge out there about SB along with the experiences people share about themselves and their children.

Probably the biggest thing on my mind right now is the option for Fetal Surgery. It's a relatively new practice for fetuses with severe birth defects where doctors can open the mother's uterus and perform surgery on the baby while in the womb. My initial thought was NO. There are several risks involved that scared me, the biggest risk being preterm birth. The surgery is performed between 19 and 26 weeks and delivery happens, on average, 10 weeks after surgery. Mothers are put on modified bed rest to minimize the possibility of going into labor. The closest surgery location is in San Francisco. Well, as fate would have it, Isaiah and I had a trip to San Francisco planned for the following week. Over the next few days we did a lot of research and decided to schedule a visit to the Fetal Treatment Center in SF to meet with people and get some questions answered. We also came into contact with a friend of Isaiah's who had the prenatal surgery in SF a few years ago. (http://lanceandnicoledyer.blogspot.com/) She shared a lot of reassuring information and SB resources with us. Her most comforting words: "Just know that pregnancy is the hardest part of having a child with Spina Bifida - there are so many unknowns. It gets much better after they're born! I always wondered why so many women blogged tons when they were pregnant with their Spina Bifida baby, and then hardly at all after they're born. It's because it gets easier!" Our outlook on Fetal Surgery changed when we realized there is a lot of hope for our child. The surgery will give him a 40% less likely chance of needing a shunt--that's huge!--by reversing the effects of the Chiari II malformation during the second half of my pregnancy. It could also increase his mobility by halting the spinal cord exposure, though it obviously cannot erase the nerve damage that's already been done. Knowing the risks and understanding the surgery is not right for everyone, we started to feel that it could be right for us and for Baby Hudson.

This past Thursday we went to the Fetal Treatment Center for an ultrasound, a prenatal consult, and an echocardiogram. The ultrasound and echo would give us a good idea of if we even qualify for the surgery and we could move forward with our decision-making from there. The ultrasound showed Baby Hudson could have a relatively high lesion (though he wouldn't move much to let the doctors see his spine very well) and mild fluid build-up in his ventricles. Typically a higher lesion means less mobility. While this is not good for the baby, it means the SB is "severe enough" to qualify for surgery. Another qualifier is that the echo showed Baby Hudson has a completely healthy heart--the first good news we've heard about our baby in a while. Other tests we still need to do to qualify for surgery: Amniocentesis showing normal chromosomes; MRI showing fluid build-up in the brain and severity of the Chiari II malformation.

Our thoughts now?

• We're moving forward with prenatal surgery!
• I am terrified of having a hip to hip incision and scar, not to mention the other effects of surgery
• I am excited to possibly help Baby Hudson's future
• I need to tell my principal I probably won't be teaching this year
• Bedrest for 10 weeks?!
• How am I going to find "support people" to watch/help me during bed rest?
• AAAGGGHH!!!!
• Wow, we are so blessed to live in this time of medical advancements
• Keep us in your prayers!

For a while I only thought, "This is going to be so hard for me...Having this child will be such a trial for me..." Now I'm thinking, "This is going to be so hard for my child...He is going to have this trial for his entire life." He will never know life without SB. Can you imagine that? Somehow I'm going to have to explain to him that he was just born with Spina Bifida and will always have it and I will always love him unconditionally and sometimes because of it.

It's funny how this all came about. Just last week--maybe it's been two weeks now--I was praying for two things: First, I wanted to love my baby more. Since he was making me sick and tired and his arrival is so distant I wasn't feeling much love for him. I didn't even know he was a "him" yet. Second, I wanted to love my family more. Miraculously, God found a way to kill two birds with one stone. The minute I found out my baby could be sick I wanted to love him and care for him so much. I wanted to do whatever it would take to help him be comfortable and happy. And I wanted to tell my family everything because I knew I would get their immediate support and love. Now there's a lot of love going around our family. Isaiah and I love each other more than ever. Our immediate families are supportive and hopeful. My extended family has reached out with their words of encouragement and their prayers. I hope Baby Hudson can feel everyone's love as much as I do.