35 weeks! How did this week sneak up so quickly? It feels like just the other month we were finally announcing our joyful news of pregnancy, just the other week that we announced that we are blessed with having a girl, and feels like just a day ago that we announced our heartbreaking news that our amazing miracle baby has Full Trisomy 18 and VSD, a hole in her heart.
What we didn't know when we were thrown into the thick of a Trisomy 18 diagnosis is that many babies do live longer than expected or anticipated. For about a month now I've been a part of a supportive group of parents who have babies with all varieties of Trisomy. Our babies have value, each life is meaningful.
I've spoken to parents who have babies who are now several months old, years old, teenagers, even young adults who have Trisomy 18, even Full Trisomy 18. Before you mention or ask me, '...but last month you mentioned Mosaic Trisomy 18 verses Full Trisomy 18 and how a full diagnosis is a fatal diagnosis..." Yes, when we first learned about Trisomy 18 for our daughter that is what we were told. Being a part of the child loss community for over seven and a half years you don't often hear the positive stories after a limited-life diagnosis. It is possible though, so that is why we continue to hold onto hope.
Moving forward planning for life and death. Not knowing when the ending will occur. We may get to spend a life together with our miracle baby, we just don't know how long.
My calendar feels like a whirlwind of appointments, phone calls, emails, more appointments, more phone calls, more emails, waiting, hoping, dreaming, trying not to stress or worry or become overwhelmed. It's not been easy at times.
I don't cry as much as I used to. Perhaps it is because I'm trying to stay strong for everyone in our family, and because I've not had any time to slow down. Whatever the reason my eyes still tear up often, they just don't spill out over my cheeks every day like they did a month ago.
September 14th was my first detailed ultrasound to look at our daughters heart, blood test results had come back before then with concern with possibility of Trisomy 18. That ultrasound found the hole in our daughter's heart and we were told it was recommended to move forward and have an amniocentesis. On September 23rd I came in and we had the procedure to help give us concrete answers. It was on October 2nd minutes before picking up our son from school that I received the life shattering phone call, Trisomy 18. Our anniversary didn't feel very celebratory on the 5th, spoke to the genetic counselor about just how serious the Trisomy was. We felt like the future we had hoped for with our daughter was shattered.
Let me make it clear that parents learning about their child diagnosed in the womb with a limited-life diagnosis is one of the worst things you can hear. I do support personal choice and understand even more the reasons for why one may choose they can not move forward. It was our personal choice to continue down this path of uncertainty with hopes we could birth and spend a moment with our child before she passed.
At 28 and a half weeks there we were... Doing the best we could. Not until recently that we've had the strength to be able to speak with some of our family over the phone and talk about what is happening with our loved ones.
I was finally able to see a Pediatric Cardiologist by October 14th, a day before 30 weeks pregnant. We had an echocardiogram done for our daughter and it showed that at least her heart had not worsened since checking one month prior. The first glimmer of hope being told from a medical professional that we may actually get more time than we imagined. The entire time we were preparing for the absolute worst, and we still are, however being told that we may get time, even if for a week or a few months, gave us hope.
It wasn't until the end of October that I was finally able to get into a fetal health center for a consult to see about transferring my care so our daughter may be able to have the extra care she may need. Days before Halloween, a long day filled with several appointments, and re-estimation of my expected due date going back to the original date of December 24th.
Finally November 11th for a consult with a neonatologist team who works in several hospitals in the greater Kansas City area. An appointment that I was confused about as I felt it was more about an office I may transfer my care to, as a second option appointment, and was more just an appointment about education about our daughter and what maybe to expect and be watchful for. The following day after that appointment I was 34 weeks.
My whirlwind of phone calls, calling hospitals to ask more specific questions, emails with additional questions and comfort care requests continued, leading up to yesterday. Tomorrow I will be 35 weeks along with our miracle rainbow baby girl, a blessing we've made it this far. And finally an appointment with another office I may transfer my care to. Hopefully after this appointment on Friday we will have some clarity to where will be best for myself and our daughter.
I used to be a volunteer breastfeeding support person and remember how often I would listen to parents in a difficult situation where they may have to transfer their care. I would listen to these parents along their journey if they had reached out prior to birth, get support, learn about breastfeeding and ask questions. And several times recall mentioning that changing care is possible, even late in pregnancy. If you need to change your care or are not happy with where you are then you need to be the advocate for yourself and your baby. I find it ironic when it's now myself allowing the grace and reminder that it is ok to transfer our care somewhere else that may be able to better help us. If not our needing possible additional care I would not be transferring.
I have been busy connecting with organizations to help our family and our daughter in the future, trying to make sure we have what we need when she is here, and hoping our son is able to make memories with his baby sister.
A week and a half away from the Blessingway we plan to have to celebrate this journey with our daughter, my pregnancy, and hope for the future with being parents again. Each day is a milestone that I did not think we would reach, a gift, a blessing, a miracle. This is another reason why I continue to hold onto hope.
Our journey hasn't been easy at times, if not for a Full Trisomy 18 and VSD diagnoses this pregnancy has been uneventful and typical of what I may imagine it would be at the age of 39.
If you find yourself or someone you know in a similar situation know that your feelings or their feelings are valid. It's ok to be sad as well as excited, scared and hopeful, feeling heartbroken and praying for a miracle.
Much love to you from one angel / rainbow parent to another. <3
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