We had our post op week 4 appointment this past Tuesday. No changes from last week to report. Everything is continuing to look good at this time. We met with one of the nurse practitioners from the spina bifida clinic after our OB appointment. It was nice to physically see what a shunt looks like if she were to end up needing one. We also were able to see a urinary catheter also ( I am guessing by size maybe a 5 or 6 french) The urinary catheter is not a big deal to me as I am a LPN and have catheterized numerous people over the years- my husband on the other hand looked like he was going to pass out. Dealing with the reality of most likely needing to cath her is very stressful for him. I think like most other Dads in this situation, he is afraid of hurting her or doing something wrong that ends up with her getting a UTI. It was good to know that the hospital will provide a gel pack for her lower back to place in her car seat and if needed they have a bed style car seat that we can use also. The spina bifida clinic runs twice a month and all of the specialists that your child would need to see are scheduled to be there. Over the next two appointments we will be meeting with her neurosurgeon and the neonatalogist.
Tomorrow marks the 28th week of pregnancy which is a one of the first milestones for fetal surgery. If all goes well from this point- only 9 more weeks of bedrest.
On a crappy note I received a letter yesterday from my employer regarding my health insurance coverage. After the end of August I will need to pay alittle over $1600 a month for COBRA until I can return to work- which if all goes as planned will not be until mid November. Hmmm . . . . .
On one of the comments left on our blog I was asked why my family had decided to have the fetal surgery done. I will try my best to explain our reasons. When you first hear that your baby has a birth defect and the challenges that come with that defect- spina bifida in our case- you feel powerless and defective. You run all of the events of the pregnancy through your mind- searching for something you did wrong - something to place the blame on. You think about all of the "normal" things such as walking or riding a bike that your child may never be able to do. Your heart breaks with the anticipation of the challenges your child is going to face over their lifetime. Let's face it- it can be an ignorant and cruel world out there- even for a person with no disabilities. Your protective instincts take over and you become the biggest cheerleader for your unborn child. You spend hours researching the birth defect in depth. You read about other people's experiences- what worked well for them- what didn't work for them- ways they have adapted to meet their needs. You study the results of the MOMs trial in the New England Journal of Medicine. You speak with specialists regarding the birth defect. You learn about the risks involved with fetal surgery. Having the surgery is a very individualized choice- it is not for everyone. While you can not erase or cure the birth defect, fetal surgery gives you the opportunity to help prevent further disability. Amniotic fluid is very caustic to the open spine and will continue to eat away at the nerve endings causing more damage and disability during the remainder of the pregnancy. The open spine can continue to pull down and cause further hindbrain herniation (Chiari malformation) and block the flow of CSF causing hydrocephalus to occur. You still have the possibility of hydrocephalus occurring after fetal surgery but preventing the Chiari malformation from worsening is a major deal. The Chiari malformation can cause problems with breathing and feeding which could result in the need for a trach or feeding tube. We chose to have the fetal surgery with the understanding that the surgery is not going to cure our child's spina bifida but it can help prevent further disability from occurring. We want to give Rachel a chance for the best possible outcome in her life. Fetal surgery gave us the opportunity to dissolve the feelings of being powerless and to do something positive for our unborn child.