“... trouble, trouble
Feels like every time I get back on my feet
she come around and knock me down again
Worry...Oh, worry, worry, worry, worry
Sometimes I swear it feels like this worry is my only friend”
Ben, Charlotte, and I had a UAB appointment this past Friday and I have been meaning to give everyone an update, but VBS has kept me busy. Sorry for the wait. We went down Thursday evening along with my parents and stayed with my oh-so hospitable grandparents, because our appointment started in the morning. This visit was a little different than the last one, because I not only had an ultrasound to see how Charlotte was progressing but also met with a genetic counselor, a rehabilitation Doctor from Children’s, the head of the Spina Bifida department, and one of the neurosurgeons from UAB. It sounds a little overwhelming, but it was nice to have many questions answered and to see what a coordinated team UAB has for Charlotte.
The ultrasound was done first by an OB specializing in high risk pregnancies. He or one of his team will be delivering Charlotte in a few weeks. The ultrasound showed no major changes from our last visit which was quite a relief for me. One ventricle in the brain is slightly more enlarged than another, but its change has not been enough to cause any alarm. I will be meeting with him again in four weeks for another ultrasound and to discuss the actual birth in more detail.
Next we met with the genetic counselor and the rehabilitation doctor. The genetic counselor came in case something showed up on my ultrasound to indicate the defect might be genetic rather than random. Fortunately, this was not the case so I will no longer be working with her. Next we talked with the rehabilitation doctor about the specific problems Charlotte might face. He couldn’t have been nicer and did a great job of explaining everything. First we discussed Charlotte’s feet. She might have trouble in this area ranging from flat feet to weak ankles and the possible need for braces. Next we discussed the bladder. The more major problem is a Neurogenic Bladder, meaning she has trouble fully emptying her bladder causing UT infections and possible back up into the kidneys which can lead to permanent damage. She will be monitored for this problem, and the usual solution is Clean Intermittent Catheterization (CIC). This simply means emptying the bladder by inserting a catheter and draining urine. The catheter is removed each time, and the procedure is repeated four to five times during the day. The less physically harmful problem she might face is if she is unable to control the muscles that stop bladder and bowel functions from happening. Some children can learn a schedule, and the doctor informed us there are medicines that force the bladder and bowels into scheduled release; so she could learn what time she has to go to the restroom.
We also met with Betsy the SB coordinator. She was extremely kind and explained she would be our “go-to” person with any questions or concerns before and after Charlotte is born. I have to say that the UAB team is pretty amazing. They all seem to be passionate about helping children and are very well organized. Betsy gave us a book on SB called Health Guide for Parents of Children Living with Spina Bifida. It has been daunting and helpful all at once, and I’ve pretty much read it cover to cover.
The neurosurgeon was last, and he explained once again how and when this opening happened (first 26 days of life). He also explained how they would go about closing the spine. The surgery will happen within 24 hours of delivery and typically takes from 1 to 3 hours. He informed us they would be watching her in case she needs a shunt, which 80% of children do with SB in this location. He then gave us the wonderful news that I can hold her on a pillow (avoiding the back) soon after surgery and that breast feeding can typically start three days after surgery. We had all been preparing for her having to be in an incubator in the NICU for 2 weeks without being able to have direct contact, so it was wonderful to hear that this would not be the case. We finished up the meeting with a few more questions and then headed back to my grandparents.
Emotionally, I had several rough weeks right after we found out, but I had started to feel like I was finally on the road to acceptance. However, the road to acceptance is paved with potholes and sharp turns. I had decided not to do much internet research after we found out, because I knew it would always give me worse case scenarios. And, I worried about accuracy. I was starting to accept that Charlotte was going to have problems but did not fully realize what they would be. The unknown is always hard, but I believe there is also some truth to the statement “ignorance is bliss.”
Right after our appointment I felt a huge sense of relief to have so many questions answered and to know I would have contact with her sooner. Yet, as time has passed, I have been a bit overwhelmed by the future. Now that I know in detail, the complications it feels as if I’m grieving all over again. I know things could be worse but that doesn’t mean things are easy. I’m always wishing it could be me and not my baby girl that has to go through all this. I think part of these anxieties stem from the fact I’m already in my third trimester, and the date is soon approaching when little Charlotte will be here. I’ve often wondered how I would handle a “normal” pregnancy/birth and now my mind reels at the idea of going through something different. I get overwhelmed that I probably would fail as a parent to a child with no complications; so how on earth will I give Charlotte all that she needs? Will I be able to spot the signs of a need for a shunt, and a backed up bladder? Will I be able to monitor her in such a way that we can catch complications before they get bad? Will I be enough of a mother??? In my mind I know that even if Charlotte were perfectly healthy, I would not be enough. I am a sinner through and through. Only God is enough for Charlotte….but in my heart I so desperately want to be everything for her.
I also worried that Charlotte might have a hard time accepting the body God has given her. It hurts to think she might view herself as less because of her complications. I’ve always struggled with my self image; thinking I was not pretty and placing too much importance in being physically attractive. I struggled in this area, and I am healthy. I imagine that it will be so much harder for her, and it kills me. This world is a tough place to be if you are not physically perfect, and every magazine and TV Ad is spotting ways to help in the search for perfection. I already know that I will think Charlotte is the most beautiful thing I have ever seen. Yet I want so much to protect her from these lies and to help her realize that her worth is found in God. I’m already praying that she will fully understand that this is exactly the body God wanted for her, and it is made in His image to glorify Him.
As always, I would ask that you pray for Ben, Charlotte and me. I would appreciate if you would pray that I have peace and accept the bread God has given me. Please pray for strength for Ben. He has had to be my rock through all of this and that can’t be easy. And please continue to pray for Charlotte: for her health, for sound mind and judgment for the doctors working on her, and for her future relationship with Christ. Thank you all for your support. I literally do not know what I would do without it. I thank God for all of you.