Hello! I’m writing this update from the plane. We’re on our way to our layover in Las Vegas. I wore my Sharks Hockey shirt just for the occasion. I think it shows how much better of a day today was, that my brain was free enough to plan my wardrobe in order to gloat a little about my team beating Vegas in the first round of Stanley Cup playoffs😊.
We started off the day with a tour of
the PICU, where Annelise would stay after heart surgery, and the NICU, where she would stay when she no longer needs to be in the PICU. We met with a social worker who just works with the NICU who asked us all sorts of questions to get to know us, spending the time, even though she was aware that we might not even end up coming to their hospital to deliver. We were very impressed with how comprehensive the program they have at Children’s Omaha is. They are so organized, all of the specialists know each other and have worked with each other before. They talk about how this program is new and they are trying to make it better for all the people finding that they need to come from all over the United States. It’s so sad that they are so far away from many folks that need them, but it’s really encouraging that they are embracing the opportunity to fill the unmet need of babies who need heart surgery and have Trisomy 18 but are denied elsewhere based on just the diagnosis of Trisomy 18, and not for an actual medical reason.
There is still a possibility that we could finally meet with the heart surgeon at Miller Children’s Hospital in Long Beach and he might say yes, he’d be willing to do a repair for Annelise’s VSD and the new problem of the aortic coarctation. I’ve heard from families that the heart surgeon from Miller Children’s has denied surgery, but I’ve spoken on the phone to a cardiologist here who says he has done surgeries on babies with trisomy before... so who knows?! That’s part of the problem with decision making... we have a sure thing in Omaha that would mean months away from our home and support system.... or a possibly very capable team here at home, but we haven’t met the people on the team yet that would perform her surgeries, so there are always those questions of “who are they? What have they learned about trisomy 18? If they have learned in school what most doctors have, that trisomy 18 leads to death shortly after birth... will their perspective lead them to actions of recommending comfort care only and not performing surgeries?”
There is still a very real possibility that Annelise won’t make it to being born, or she could have surprise things wrong with her that will make it harder for her to survive than we anticipate, but it is encouraging to hear that data is showing that when heart issues are repaired, and measures are taken to ensure that the baby is getting adequate oxygen (like a tracheostomy) and they have proper nutrition (sometimes needing a g-tube to be fed through), they can live and have a place with their families that love them.
Sounds like an overwhelming home life, right? That’s part of the struggle in my head right now. I’d prefer none of those extra 10,000 steps per day that it will take to care for this girl of mine. It’s going to be a major loss to mourn because I will miss out on the typical baby time. I want to be able to put her in her car seat easily and take her places without oxygen attached to her, not to have to be obsessively vigilant about germs that could cause major issues for her lungs, to feed her wherever I am easily, and so on and so forth all of the typical infant experiences that will be different with this girl. But I want this girl so much more than I want my dream life. I’ll take her with tubes attached, billions of extra tasks per day, and an altered milestone schedule that will just be hers. She’s worth it, and Jesus made her just for us. I’d be honored to have the chance to care for her and bring her home! That’s the new dream.
There was good news at our neurosurgeon appointment this morning regarding results of the fetal MRI yesterday. The neurosurgeon said that although her head is small, the ventricles in the brain look good and he has seen no indication at this point that the parts of her brain wouldn’t continue to develop. He said the different shape of her head (like a lemon.... that’s the technical description!) is due to the Spina bifida issues, and not an additional problem with brain development as the MFM specialist had been concerned about yesterday. He had discussed the concerns with the MFM, so she also told us about the change in prognosis when she saw us at the end of the day. I appreciated her taking the time to basically tell us she was incorrect and she also told us that she consulted with the neurosurgeon and found that the symptoms she was concerned about are results of the Spina bifida, and are “normal” parts of Spina bifida issues.
There was even talk about not ruling out her being able to move parts of her legs! We’ll have to wait and see for that answer. Also encouraging, is that he said it seems her Spina bifida lesion might be covered at this point, and not leaking cerebrospinal fluid. He said that this could always change because the covering is the consistency of wet tissue paper, and as she gets bigger there’s more chance to aggravate it in the womb, but good news for now.
We also met with the coordinator for the palliative care program in Omaha...she was also interested in our wishes, and what “quality of life” means to us, and our thoughts on what it would mean to relocate to Omaha for a possibly long term stay in the NICU.
Almost finally, we got to meet the heart surgeon who is basically the whole reason for us to travel out there! I have watched his YouTube video about trisomy 18 heart defects so many times and seen so many Facebook posts recommending him, that I felt like I was meeting a celebrity 😄. He took us through a personal version of the YouTube video that I had watched... and I’m so glad I did that studying, because I was almost able to totally follow what He was saying. The plan would be to give Annelise an echocardiogram after she’s born to get a clearer look at her aortic arch, then let her go for surgery for her Spina bifida... and then soonish after that, do her heart surgery, all the while monitoring how she’s breathing and about a million other things that I don’t even remember, but am glad is part of their work up of her!
We ended the day with a “care conference” where most of the specialists we met with came together to give us recommendations and talk to each other too. That’s where we saw the MFM again. They didn’t pressure us in any way to deliver there, but I left feeling like we were treated as if we lived there and would be coming back forever. They really are exceptional humans, and I’m glad we made the trip!
I should have made this post into chapters, it’s so long! But today was a long day, and I have a terrible memory, so I’m sure I’ll be reading this post later to remember all that happened!
We’ve decided not to make a decision yet about where to deliver. We still have some weeks left (but only 6!) until they suggest I get back out there because trisomy babies tend to come earlier and sometimes in an emergency type way like me having preeclampsia with severe features, at which point I wouldn’t be able to make the trip at all! Which is another reason that I want to further my relationship with Miller Children’s Hospital specialists... because we could end up having no choice but to deliver here in Southern California!
We’ve definitely stretched our faith muscles this trip, and at the end of it, I’m confident that we’re looking for where God wants us to be, and that He’s with us wherever we end up. To be continued, I wonder where that will be!!
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