Yesterday we got to visit the children’s hospital where Mason will have surgery shortly after he is born. My husband and I met with several people and came away with too much information to even process, but that’s okay. We were able to get some questions answered and learned things along the way. I thought I would share our visit so I don’t forget it.
First we met with Becky, the Fetal Diagnostics Coordinator. She’s full of information and is one of our go to people if we have questions or need to set appointments between now and Mason’s birth. She gave us a tour of Children’s. We walked all over that hospital and went to a place I never wanted to go – the NICU, or Neonatal Intensive Care Unit. Talk about overwhelming! We walked between aisles and aisles of babies who are all very sick or very early or some combination of the two.
I am grateful, don’t get me wrong. Seeing how well-equipped each area was, the many monitors, nurses, video cameras, and more all right there to help was reassuring. I just don’t want my baby to need to be there. It breaks my momma heart that he won’t have the ‘being held every moment’ experience that the others started out with.
We got to see a little guy who was being released that day who has Spina Bifida. Honestly, that was a total blessing. Spina Bifida is not super common, so our large childrens hospital only sees about 10-12 babies born with it each year. We were able to talk with the nurse caring for this little guy, ask her questions, and even see the place on his back where he has been “put back together”. While each child’s scar/closure will be different, it was nice to see one in person and know that at just 9 days out he was able to be laid on his back and was healing nicely.
After the NICU we spent time talking with Becky and another hospital person who will be there for questions as needed. Becky asked if we plan to stay at the Ronald McDonald house there beside the hospital. I had not thought that would be possible as we only live an hour away, but we are in another county and so we can. Yes! Being a five minute walk through the hospital from my son or an hour plus drive in winter weather is pretty much a no-brainer. While my husband will also spend some time at home with the other children, I will stay pretty much completely there. Especially since I’ll be recovering from my own surgery (oh joy). I won’t be any help at home with my six older children, they won’t be allowed to climb on mommy, and Mason really needs me more for that two week period.
Our next stop was an appointment with the pediatric neurosurgeon who will likely do Mason’s surgery on his back, as well as putting in a shunt if it is needed. He was okay, but a bit annoying. His outlook seemed to be, “You won’t know anything for sure until the baby is born, so there’s not much to say. And your baby doesn’t have hydrocephalis yet (though he’s got a 90 percent chance of it and will require a shunt) so why talk about the shunt procedure either?” Grr…. Thankfully I had a list of questions I wanted to ask, so I got those answered and we could move on.
Our third appointment of the day was with a lady named Margaret. She’s the Nurse Coordinator for the Myelomeningocele Clinic at Childrens. She is the person who will help us coordinate care for Mason after we’re released from Children’s. She’s our resource person for living the rest of our life, basically.
I also like the way Children’s Myelo Clinic works. Every Friday they have clinic and a doctor, therapist, or specialist for pretty much anything a spina bifida child could need will be there. You show up in the morning and see whomever you need to over the course of a couple of hours. YAY! That means we’ve combined multiple doctors and practices into a single visit.
So How Do I Feel Now?
We’ve known about Mason’s Spina Bifida for just over two weeks. While some of the details overwhelm me at times, I’m doing pretty good. I can say 100% that we are thrilled to be Mason’s parents and I can’t wait to meet my little man. I already wonder who he’ll look like, and what combination of personalities he’ll have compared to the rest of his siblings. I feel peace and I know that is all God’s blessing. I’m praying more and feeling closer to Him than ever before because I really do have to just trust His plan.