Tuesday, April 19, 2011

The Day Everything Changed

I guess you could technically say that January 1, was the first day everything changed for us. That day, starting a new year with so much hope and potential, we found out we are going to be parents.

Fast forward four and a half months to April 18th. We again started the day with so much hope and excitement. We woke up in the morning to get ready for our 20 week ultrasound and find out for sure that our little baby is a girl. We got a little hint that she was at our 12 week ultrasound, but it was still too early to tell 100%. We did get our confirmation that our little nubbin is indeed a girl.

We also got a little more information that we were not expecting; our sweet girl has a birth defect. She has a protruding sac on her lower back that has been identified as spina bifida. We were shocked and numb. How could this happen? Our minds were reeling with all the worst case scenario options. My OB was talking about things like wheelchairs and meningomyelocele. Neither of us got much sleep last night. The worry about what the future would hold for our precious little girl was overwhelming.

Dr Welch, my OB, had scheduled an appointment for us with a fetal-maternal care specialist first thing this morning. She obviously has great respect for Dr. Martin and had worked with her before. We went to the office and first had another ultrasound, then Dr Martin came in to take some pictures for herself and get a first-hand look at our little one. She is really fantastic. Even though she had squeezed us into her already packed schedule for the day, she took the time to go over all the information with us and answer our questions. After several hours we left refilled with hope for our little girl's future.

So what we are looking at is definitely spina bifida. We were happy to see that she was moving, kicking, crossing and uncrossing her legs. She wasn't moving around too much yesterday and after receiving the news we knew paralysis was one of the possibilities. Not the case. The lesion on her back is pretty low, closer to her tail bone, below the spinal cord. Although this means there are still nerves exposed, it is a positive that her spinal cord itself is not. Her feet and ankle position looks normal. Another positive. Clubfoot is a possible side-effect that would make it very difficult for nubbin to walk. According to Dr Martin, there is pretty low chance of brain damage or neurological defects, which I was really worried about. She has a strong heartbeat and her heart development looks great. Like I said, we got a lot of good news today to put things into perspective for us.

While we realize we are at the beginning of a long road, we are feeling hopeful about positive outcomes for our family. I think Dr Martin said it best today when she told us we are getting a crash course in parenting. We are faced with some difficult decisions earlier than we thought we would be. But that is the job, to try and make the best decisions for our daughter and her life. We are certainly looking at more appointments with specialists, more tests and an ultrasound every few weeks to check on our wee baby. We are probably going to have to deliver in St. Louis via C-section. And she is going to face surgery on her back, shortly after (or possibly before) she is born. She will be spending some time in the NICU.

We don't have all the answers, but we have a better idea of what we are facing. I know that I can rely on my best friend, my partner, my husband to be by my side and we can lean on each other. I love you Ron. I also know we have positive thoughts and prayers coming our way from all over the place. Thank you so much everyone for all your positive energy toward us and our baby. Keep 'em coming!

Now a few pictures of our little girl. They are photos of the ultrasound printouts. They aren't quite as clear and distinct as some ultrasound pics we have seen, but still cute...I think.

Little girlie parts (hee hee):

Arms up covering her face (zoomed in):

Profile, with cute little nose:

Another profile shot:

Close-up of a little baby foot: In the original I swear you can see her little toes.

1 comment:

  1. I love you both very much and I cannot wait to meet your precious baby girl and my niece! You guys are very strong and I know you will stay strong together. The pictures are beautiful! Thanks for sharing and keep them coming!