Yesterday we met with a Neonatologist and spoke with a Perinatal Social Worker. Similar to the consult I had two weeks ago, it was recommended for us to reach out to Carousel for Pediatric Palliative and Hospice Care.
At first I thought this appointment would be similar to the other appointment however this was more focused on education and knowledge about what having a baby with Full Trisomy 18 means, what a child with VSD means, what the future weeks and birth may look like.
There are no answers right now, no crystal ball to gaze into, just holding onto hope that our decisions help guide us to where we are meant to be and get as much time with our daughter as possible.
We continue to learn about Trisomy 18 and what this could and will mean for our daughter's future.
Many factors to take into consideration. The following is from https://www.trisomy18.org/what-is-trisomy-18/how-is-the-baby-affected/
"Common Problems associated with Trisomy 18 can include:
- Heart defects:
- VSD (Ventricular Septal Defect): a hole between the lower chambers
- ASD (Atrial Septal Defect): a hole between the upper chambers
- Coarctation of the aorta: a narrowing of the exit vessel from the heart
- Kidney problems
- Part of the intestinal tract is outside the stomach (omphalocele)
- The esophagus doesn’t connect to the stomach (esophageal artesia)
- Excess amniotic fluid (polyhydramnios)
- Clenched hands
- Pocket of fluid on the brain (choroid plexus cysts)
- Rocker bottom feet
- Delayed growth
- Small jaw (mycrognathia)
- Small head (microcephaly)
- Low-set ears
- Strawberry-shaped head
- Severe developmental delays
- Umbilical or inguinal hernia "
We also specifically learned yesterday that babies born with Trisomy 18 can have difficulty regulating their body temperature, have higher blood pressure, have an apnea episode and stop breathing, difficulty with growth, difficulty absorbing nutrition regardless of a feeding tube or not.
So while our baby girl may not have a complication with her heart immediately after birth, her having Trisomy 18 could be what ends her life with us on Earth.
What seems to be the theme right now with rising coronavirus numbers, is getting us home and out of the hospital as quickly as possible after birth. And for my health learning that having coronavirus back in July and problems breathing and lingering difficulty, I could have life threatening health issues if having to have a cesarean. Our focus from here on out is being able to have a VBAC (vaginal birth after cesarean). I want to believe that I can do this, I've done it once before however the circumstances weren't ideal after the loss of our identical twins. That last vaginal birth was about eight years ago.
The one thing that we can be optimistic about is several hospitals we've spoken to are trying to make those considerations for special circumstances, and will try to get us out of the hospital and back home as soon as possible (with hospice care) if we can't have our son meet his sister in the hospital.
To repeat what I wrote on my Facebook blog Holding onto Hope... You may not appreciate the circumstances right now however let us all please do our part to be safe and not continue to spread this virus. After having coronavirus back in July and taking an additional month to be able to breathe at mostly full capacity, I worry about the possible long term consequences and damage done. I still have a lot of difficulty breathing from time to time, especially when walking up hills. This could directly impact birth for me. So I can't stress enough, please do your part to help keep everyone safe. Thank you. <3
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