Where We Are Currently: 22 Weeks
I realized after going back and reading my last post that I never addressed the results of the CVS procedure. As I’m sure you’ve gathered, the test confirmed that our baby has full Trisomy 18. The test has about a 99% accuracy rating.
Those test results did provide one positive piece of info which is that it does not appear that either Blake or myself are carriers of a “balanced translocation.” I think that’s the proper way of saying it. But basically, as the doctors put it, this means that this diagnosis happened completely by “chance,” and we should have no increased risk of this happening again in a future pregnancy. We are grateful for that.
As of today, we are 22 weeks, and the baby’s heartbeat is still going strong. It’s hard to believe that 9 weeks have passed since we first found out about everything.
With this blog post, I’m hoping to get anyone who is following our journey up to date with where we are currently by providing some of the newer info we’ve received.
On a personal note, outside of some sporadic moments where I breakdown, I feel like I am gaining strength and courage. I know these will be needed in facing what is to come. I am thankful for science and that it is allowing us to have an idea of what to expect in advance. I can’t imagine what it was like for women who celebrated their pregnancy for 40 weeks only to learn of this diagnosis upon the birth of their child or just at a much later gestation than when we were able to find out. I am grateful for the opportunity to prepare myself, to the extent possible.
Our pregnancy and the reality of the diagnosis has been and still is on my mind pretty much 24/7. But I’ve made progress. I can talk about it without crying. I can be around sweet healthy families and kiddos without getting upset, and I can celebrate some of my closest friends who have recently had or are about to have healthy little miracles.
So many of our friends are having kids right now. One of the many reasons we were excited about the timing of this pregnancy was that our kid was going to grow up with many of our friends kids.
In the midst of the worst season of our lives, our friends are having some of the most exciting moments of their lives. We knew in the middle of our journey, we needed to be there for our friends no matter how we felt each day.
“Rejoice with those who rejoice; mourn with those who mourn.” Romans 12:15
I believe the strength I am feeling is from God and is likely a result of the many prayers that you all are sending on our behalf. We are forever grateful for your prayers!
If you don’t already know, our sweet little baby is a BOY. 💙
When the nurse told us it was a boy, it was harder to hear than we thought it would be. It just seemed so much more personal when we found out his gender.
We are currently working on a name for our little man, but we haven’t decided 100% on it yet.
We are seeing the specialist every four weeks and our doctor every four weeks, so we are seeing someone at least about every two weeks.
At our appointment before last, our little guy didn’t want to cooperate with the doctors and get in the positions that they needed him to in order to see everything, but we did find out that he has a hole in his heart. He also has an issue with his kidneys, but they are not sure what — they just said they looked “brighter” on the sonogram than a normal baby. He is not drinking as much amniotic fluid as he should be, and they say the resulting extra fluid could cause me some discomfort if it continues. He has clinched fists, which are common among T18 babies, and he is in the 30th-50th percentile growth wise.
We had two more appointments this past Monday and Tuesday. At the specialist on Monday, they mostly focused on the hole in his heart. They say the issue could resolve itself over the coming weeks, but there is no way of knowing for sure. It was quite an appointment as they made me feel pretty bad about not fully having made a decision on my delivery location (this was the specialist at Northside). I didn’t realize I needed to have my mind made up during week 21. The specialist noted that leading up to birth, he believed Piedmont and Northside had many of the same procedures and protocols, but it was the care administered after birth that he was unsure of at Piedmont. He also told me that if I were to change hospitals, I would need a new OBGYN at Northside and that some OBGYNs might not take me (not sure what that meant). He told me I needed to see a neonatal cardiologist related to the baby’s heart condition and that I needed to do these things before I came back to see him in three weeks.
Fortunately, I had an appointment with my doctor at Piedmont on Tuesday, and she made me feel much better than I felt leaving the specialist the day before. She said some of the big decisions concerning our baby’s life after birth do not need to be made at this point as the baby has not even reached viability. She confirmed my thinking on that. She also added that there was no reason for me to see a neonatal cardiologist right now and provided me with the name and number of a new specialist. :)
Despite some of the chaos, each time we get to see our little guy on the sonogram, it brings us a little bit closer to him. It also makes the news a little tougher to accept.
Over the past few weeks, I have been reminded by many people who have taken time to share encouragement, loving words and amazing stories of redemption with me, that God can be trusted and that He is good.
All who have reached out to us have been a blessing during this time.
The following words of encouragement were shared with us by others. Maybe they will provide you with encouragement too.
This one was from the perspective of God speaking:
“Do not resist or run from the difficulties in your life. These problems are not random mistakes; they are hand-tailored blessings designed for your benefit and growth. Embrace all the circumstances that I allow in your life, trusting Me to bring good out of them. View problems as opportunities to rely more fully on Me. When you start to feel stressed, let those feelings alert you to your need for Me. Thus, your needs become doorways to deep dependence on Me and increasing intimacy between us. Although self-sufficiency is acclaimed in this world, reliance on Me produces abundant living in My kingdom. Thank Me for the difficulties in your life, since they provide protection from the idolatry of self-reliance.”
“We do not always understand the circumstances, but we can hope in the truth that the Father is always on the throne. He is El Roi- the God who sees you and knows your deepest fears and pain. His ways are greater, and His thoughts are higher. He is the author and perfector of your Faith. Know that He is going before you and will continue to lead you with peace that surpasses all understanding.”
These are just a few of the powerful messages that have been sent to us.
One more quick update — when Blake and I first learned of our pregnancy, we booked what we thought would be our last two week trip out of the country for several years. The doctors approved it (at the time), and we actually leave today. We are still going, and we are excited to get away for a little while and take our little guy on a trip with us.
We cannot thank you all enough for your love, support and prayers. We do not deserve to be surrounded by such wonderful people. We know that God is showing us His grace and His love through all of you! Thank you from the bottom of our hearts. 💙💙💙
2 Corinthians 12:9 My grace is sufficient for you, for my power is made perfect in weakness.