Today was an interesting day – a welcoming into one community and a farewell to another.
We started the day at a picnic for the Sparrow Clinic that treats kids with Spina Bifida. What good timing that this picnic took place after we found out about Colten’s diagnosis, but before we’ve been thrown into the thick of things. We met two extraordinary families, both with children with SB – the one boy is 4, the other family has a little 7-month old girl. Both openly shared their stories, pictures and children with us. It was incredibly comforting to talk with them about their experiences and have them shed new light on the road ahead, even if that road looks a bit bumpy at times.
The most distressing news from today is that there is a very real possibility that neither Richard nor I will actually get to hold Colten until AFTER surgery. I was given hope by another person that I might at least get a few brief times to hold him pre-surgery. Since surgery isn’t usually done until 1-2 days post-birth, this means we will not have the joy of holding our new little man until possibly day 3 of his life. This came as disturbing news, as we held our other two immediately and were even home with them within 6 hours after birth! This is just our new normal though…
Immediately after the c-section, Colten will be placed in a covered infant unit (I keep using the term incubator but I know that’s not accurate!) that has two holes where we can reach in and touch him, but until the surgery takes place, holding him is apparently out of the question. The one family DID get to hold their daughter prior to surgery a couple times – they delivered at U of M Mott Children’s Hospital, not Sparrow. This and a few other factors about Mott’s had us seriously considering going there as an option, there are just so many other factors we have to consider and Sparrow is where we feel we need to be for the birth and first surgery. After that, we will probably use Mott for other therapies, tests and the like.
Meeting these families certainly helped us feel like we’re not alone… we know we aren’t truly alone – as is evident by the reads and comments of this blog, but it’s nice to be in touch with families that have gone through something so similar to us. Every case of SB is different, but there are enough similarities that we found a lot of comfort in meeting with them.
Other things that were made more clear to us today… Hydrocephalus (spinal fluid collecting over the brain) is extremely common and the insertion of a shunt is very likely in kids with SB. If a shunt isn’t implanted immediately, Colten will be monitored regularly (every week at first) for the possibility of Hydrocephalus. Another common issue down the line is tethered spine – where the spine fuses with the scar tissue from the initial surgery and tugs as the child grows. Often children need a second surgery to correct this years down the road. The one mother also informed us that her c-section was done at 36.5 weeks (that’s exactly where we are now). So why my OB is telling me 39 weeks, I have no idea (more on that below). We also found out that depending on Colten’s conditions and health, we may actually get to bring people back into the NICU to see him. We hope to get more information on this Wednesday when we do our NICU tour and consultation.
As for the second city? Today we attended a Farewell Gathering for Greenhouse Birth Center, where both Parker and Max were born. Greenhouse will close its doors to families at the end of October (we would’ve just squeezed Colten in!) and the community is sad to see this happen, yet hopeful that another birth center will come into play soon for families choosing that as a birth option.
While there, we spoke with one of the midwives and talked about our less-than-desirable experience with the OB/GYN at the perinatal office we met when we first found out about Colten’s Spina Bifida (it was a bad first impression and left us not feeling great about the OB we were “stuck” working with). The midwife informed us that our initial referral out of Greenhouse, to Dr. Herta, did not need to get transferred to this other OB and that she would connect to find out if Dr. Herta could still do the c-section. When we got home, we received a text from the midwife saying that YES, we could stick with Dr. Herta and that she would take care of transferring care back. When we were in our appointment Tuesday at the perinatal office, the OB there didn’t even give us a choice, nor did she inform Dr. Herta that she was transferring care (more bad vibes from her!). So we are excited to be back in Dr. Herta’s hands – she has worked with many moms over the years that, for one reason or another, have had to transfer out of the birthcenter into the hospital. So that was our big thumbs up for today.
I’m hoping Dr. Herta pays a bit more mind to the fact that we’ve had both our boys early (37 and 38 weeks) and that waiting until the 39th week is not going to be ideal. Due to the team of specialists that need to be available for Colten immediately after birth, it is preferred to schedule a c-section and not wait to go into labor at any random hour of the day/night. So hopefully we’ll find out soon when they are going to help us bring Colten into this world.
Although things are much less scary with him safely inside…