Dr. Ball was a quirky man. He kind of reminded me of Waldo, from Where's Waldo, except he had salt and pepper hair and no glasses. He did have the quirky shirts and ties, that I couldn't figure out if they matched or not. Right? You're probably thinking, "Dude, you just found out your baby has Spina Bifida and you are worrying about whether or not your doctor's ties match or not?" When your whole being goes into a state of shock, you find anything that can bring you normalcy. That was a searching moment for me.
Parents from both sides attended this meeting with Dr. Ball, who did another ultra sound confirming Rowan's diagnosis. We were told that the opening occurred on his L4, which would mean some difficulty with walking, but he was still so small, anything's possible. Not anything positive or reassuring, anything and everything is, well, by chance. Dr. Ball then went on to explain our options and eventually came to describe a study and surgery he participated in a few years back. The MOMS Trial, held at UCSF was a study specifically for mothers with unborn babies who had spina bifida. 50% were then randomly selected to have the option of undergoing In-vitro surgery to repair the opening before the baby was born. Percentages of not needing a shunt were higher as well as ambulation when the surgery was performed in utero. Those babies who were born with the hole not repaired showed higher needs for a shunt and assistance with walking, as well as bowel emptying. No brainer, right? Surgery it is! Little did we know of ALL that would be entailed, but we told Dr. Ball that we would like to at least be connected with UCSF to be considered a candidate for surgery and attend the 3 day long meetings in San Francisco to ultimately make the decision.
Most people I spoke with, regarding the surgery, had 3 to 4 months to make a decision. We had 3 days.
With the in-vitro surgery, the final cut off is 26 weeks gestational. I was already pushing 23 weeks. By the time we were connected and flown out to California, I was almost 24 weeks. By the time the surgery was scheduled, to the day, I was 25 weeks along. Time flies, right?
From the time that I met Dr. Ball and the time scheduled to meet with the doctors in CA, it was a total of about a week. In that week I took a leave of absence from school, asked for a release from my calling at church, took leave of work, and cried...a lot. I spent most of my days in bed crying and holding my belly. I would rub my belly, sing and talk to it...trying to connect with the little soul inside me. My mom and mother-in-law would come over and just sit with me. My mom didn't like leaving me alone, and so she would just come over and watch me sleep while I cried and prayed and cried some more.
Finally it was time to fly out to California and we were given a crash course in elective surgery. It was 3 days of worrisome questions and no concrete answers and no guarantees. It was possible benefits for baby and absolutely no benefits for the mother. My mom, dad, mother-in-law and myself were the only ones who were able to attend the meetings. Logan had to stay behind for school and work, so he attended by SKYPE when he could. The first day we met everyone, and our wonderful contact nurse, Rachel, face to face. Smiles and how-do-you-do's were shared, and then it was time for business. For the next 2 days, everything that could possibly go wrong for me and for the baby was shared, all they knew about Rowan's condition was shared (which, come to find out, his spinal exposure was higher up...L2 which meant definite confinement to wheelchair if the surgery wasn't performed. If the surgery was performed, it would be as if the opening was at an L4...which meant he would walk, with some assistance), blood work, sonograms, and EXPO marker drawings were shared. Packets were given, sleep was lost, and prayers were shared. This was a Tuesday...they needed my decision by Thursday.
I remember laying in my hotel bed, sobbing and praying to God that I would know what to do. I remember my prayer going something like this:
"Heavenly Father, I have a big decision to make tomorrow. As I have heard everything that can possibly go wrong, I am fully aware that the outcome of this surgery is in Thy hands. There is a possibility that Rowan could die. They had me sign a paper stating that if the baby went into distress, that they should try to resuscitate, but if he is suffering, to make him as comfortable as possible, and let him die. Father, I don't want this baby to die. Quite frankly, I don't want him to be born extremely premature. The repercussions from pre-maturity are much worse than spina bifida itself! I don't care if Rowan won't be able to walk, as long as he is born healthy! The results of his condition do not bother me, as long as he is born healthy and strong. But yet, I know that my life is in Thy hands, and Thou dost know the outcome better than me. If I am to do this surgery, please grant me the peace to sleep and have faith in Thee." And with that, I was overwhelmed with a sense of peace, and I knew that the surgery was the right thing for Rowan and the right thing for me.
Thursday morning comes along, and Rachel and her perky self, sit down at the table with a big smile and ask what our decision is. Logan and I had both come to the conclusion that all would be well and that the surgery would give Rowan the best quality of life he could have. I was literally doing ALL that I could do. With that, Rachel whisked off to get the surgery scheduled and we were set to get surgery a week from that day. The next Thursday, which would be February 12, I would be admitted to the hospital and the surgery would be performed on February 13. They had an opening for Tuesday come up, unexpectedly, a family had backed out, and offered the position to us...but I declined because I wanted to go home for a bit, spend some time with Logan, and then be operated on.
The next few days were spent packing and mentally preparing for an adventure that I had no idea I had signed up for.
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