We were so nervous about today's appointment after that lovely (ARGH!) experience we had with the "Dr" we saw last time. (Just because you have a PhD does not make you a doctor. But enough about that.) We have been praying that we would be able to meet with a dr that would be helpful and understanding of our hopes and fears and desires for this pregnancy and for our baby. When someone other than the dr we originally saw today walked in we were nervous. Dh even said right up front, "uh, isn't Dr E here? We are supposed to see HER." The Dr said she was more than happy to get Dr E if we preferred and wasn't the least bit bothered, but I kind of explained the concern and the issues we had last time, and told her that as long as she was a perinatologist I was happy to give her a shot and if we had concerns we could pull Dr E in as well. This woman, Dr H, was WONDERFUL!!! She was so kind and understanding and absolutely dead on with everything we've researched, been concerned about and hope for and want concerning both my health and Sam's. From our plan for care, to delivery, to tests....it was like a gift wrapped answer to our prayers! She was a gem!
She completely addressed every fear and question and concern we've had come up in the past month. She was just so darn wonderful!
Sam is doing remarkably well. Though he's not doing any "better", or even staying stagnant as far as ventricle size, the increase over the past three weeks has been about as minimal as we could hope for. Last appt his vents were measuring 19.7 and 22.3mm, this time they were 22.3 and 22.7 (?I think?), so really not a huge change! His head was measuring 3wks ahead last time, and is consistent at about 3wks ahead this time (just a couple of days past 3wks ahead). Everything else measures almost perfectly to the day to where it should be. His heart still looks amazing-there is no reason to be doing echos or consulting with a cardiologist, which is something we were told we needed last time. His hr is strong at 149, still active and growing just as he should be which is SUCH a relief! As I have found other hydrocephalus moms online and looked at the measurements of their babies in utero, it seems that a lot of the big jumps in vent/head size occur at about this time. One little boy who measured almost exactly as Sam has at our past few appointments had a jump in head size from 3wks ahead to 12wks ahead at this point in his development. I was terrified that we were going to see that today-and SO grateful that we didn't! All things considered, our little guy is thriving in there-beating back so much of what we were told in the beginning of all of this.
We will be transferring my care, up to the U which is adjacent to the Children's Hospital that serves many of the Intermountain states. That way we will be within steps of surgery if we happen to need it asap after delivery. The U hospital and the children's hospital are connected, so it's just down the hallway. Even if I end up with a section (hopefully not-this dr was VERY encouraging about planning a vaginal delivery still!!), I will be able to just get right to baby and not be stuck at a hospital elsewhere recovering myself. Unfortunately the Dr we saw today does not primarily practice at the U, but does have privileges there and does service weeks there every so often, so she does have two partners she works with that are primarily based at the U. She was so positive about them both, and is setting up an appointment for us to meet with one of them in the next week or two. From what she said this other Dr seems to have very similar ideas towards practice as she does, and they both believe that setting up a plan of care to move forward with at this point in the game will be beneficial for us and for all those involved in my care and Sam's. She also mentioned that this dr is a crazy marathoner, so she'll for sure understand the fact that I'm still trying to keep running.
We'll soon be meeting the perinatologist who will be assuming our care-we will just be transferring everything from the midwife to eliminate all the extra appointments. The MRI will be scheduled within the next month, as well as a consult with neonatologists and peds neurosurgeons so that after we have the MRI results we can start establishing a care plan for Sam once he gets here too. The MRI is a fairly vital step in letting us know what is really going on in his head-in the mounds of research I've done in the past month (I feel like I'm working for a degree in hydrocephalus at this point!), I found that in 40-50% of cases like ours where the hydrocephalus appears to be isolated, the MRI will reveal other issues that weren't detectable through ultrasound. We are anxiously looking ahead to see what more information we can find on Sam's condition, and are so grateful for the amazing advances in technology that will allow us to do so.
It is so nice to feel like we are finally moving forward, and with plans to prepare for a baby-not a funeral! Though it will still be a wait and see thing, and as far as any of us know, it's possible that his vent and head size could increase exponentially tomorrow and totally blow the prognosis we are looking at as of today's u/s. It will still be touch and go in the newborn period, especially if he decides to come earlier than term, so the possibility of the worst case of losing our little boy is still very real. But today I feel like I am walking on air-this is the best news we have had in the past 7 weeks! So for now we're basking in the glow of today's great news and moving forward with unbelievably grateful, and hopeful hearts.
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