Thank you all for your kind words and encouragement after our post yesterday. We feel very loved, and that truly helps.
I have so many questions and feelings and explanations swirling around in my mind. Part of me wants to write so I don’t forget. Part of me needs to write so it all doesn’t keep swirling in my mind.
And another part of me writes because I want the world to know what a good God we serve, how lovingly He is caring for us, even when we don’t like what’s happening. And if I’m honest, I also write to remind myself of those promises.
So, here are a few of the questions we’ve received:
How far along are we?
We are currently 16 weeks 5 days. I can feel the sweet baby kick once in a while. Keep kicking, little one. Keep kicking. Stay with me a little longer.
What complications are we facing?
The main complication facing our sweet little one is nonimmune hydrops fetalis, which is “a serious fetal condition characterized by the abnormal accumulation of fluid in at least two different areas of the baby’s body.” Along with hydrops fetalis throughout her body, our sweet baby has heart, lung, brain and spine abnormalities. “The mortality rate for babies diagnosed with nonimmune hydrops fetalis and structural heart defects is almost 100%” (this quote is from www.carryingtoterm.org, and the prognosis was shared with us by both our doctors as well).
We don’t know yet what caused all this. Typically amniocentesis helps doctors understand the underlying causes, but this wasn’t an option (something to do with membranes being fused or not fused). We’re undergoing genetic testing to learn as much as we can.
(The website, Carrying to Term, has a glossary of terms that has been incredibly helpful as I try to understand the unfamiliar terms I'm hearing at appointments and reading on our reports. There’s still so much we don’t understand.)
What’s next?
We don’t know what the next few weeks and months will hold. At our appointment last Wednesday, baby had a strong, steady heartbeat. We’ll follow up this Wednesday, to check on both of us - my blood pressure and weight, her heartbeat, signs of distress in either of us. Each day I pray for a little more time with you, sweet little thing. Oh you sweet little thing!
Did we know anything was wrong before our appointment last week?
We didn’t. Until the gender scan last week, all of our scans were normal. Because of some cysts on me, we’d also had a few extra scans prior to the gender scan. Even after reviewing the nine-week scan again, knowing what we know now, there weren’t any apparent signs of complications.
We chose not to have the advanced maternal age testing done (prior to Wednesday), and I’m still ok with that decision. While it might have alerted us to problems earlier in the pregnancy, it would not have changed our course of action (see below) and I would have spent the last few weeks anxiously wondering. While we were caught off guard a bit at our appointment, (I guess that’s quite an understatement), I wouldn’t change that decision.
Were we given the option to terminate?
We were. In the state of Tennessee, elective abortions are allowed through 19 weeks 6 days gestation (from what I understand/have learned in the past few days). We believe that God has given us time, however short, with this sweet baby, a baby that He created and planned, and we are choosing to spend as much time with her as we possibly can, even if it’s only on the inside.
Abortion is an incredibly sensitive topic, and my heart is more broken than ever for other mothers faced with this decision. I’m so thankful for a deep rooted faith that made our decision clear for us.
How are we doing?
We put one foot in front of the other, and then we do it again. Sometimes through tears, sometimes with distractions, sometimes with joy. We’re exhausted, and I find that I can’t sleep. I’ll wake up with tears overflowing some nights. I wanted this sweet baby so badly.
Friends and family have been incredibly generous with their love, support and encouragement, whether it’s through calls and texts, meals, hugs, flowers, or messages. We’ve received messages from friends we haven’t seen in years, and we’ve had our closest friends drop everything to help.
Sometimes I feel like pregnancy and healthy babies are all around me, reminders of pregnancy in every ache, advertisement, pile of laundry, Pinterest board. And then I receive sweet messages from women who have suffered miscarriages and still births and lost children, and I’m reminded again that we are far from alone.
The girls are doing well. I can tell they are grieving in their own 4- and 7-year old ways. They were outrageously happy to be having a sibling. They have also been well supported, from their own bouquets of flowers from little friends, to trusted adults making time to check on them and offer support with us.
What do we pray for?
Sometimes it feels impossible to pray, and sometimes it is all we can manage to do. At first I prayed that it would all be over soon, that this grief would subside sooner rather than later. That’s an incredibly hard sentence to type. Honest, but indescribably hard.
As some of the shock has worn off, I’ve come to pray that I’ll be able to keep this precious baby on the inside as long as I possibly can. We anticipate that the only time I’ll have with her is during this pregnancy, and I just want to love on her a little longer.
I’m also praying that we’ll get the report back from the geneticist at our appointment tomorrow, that we’ll help our daughters process and grieve, that we’ll support each other in our grief, and that we’ll be continually reminded of the hope we have in heaven.