I found this picture when I was looking for inspiration and strength before starting this update. I think it’s a little bit perfect. It reminds me that God is holding our sweet baby in His hands, that He is completely in control and she is safe.
Our doctor appointment Monday was rough and the days following have been up and down for both of us. The ultrasound Monday revealed some new findings. They said as the baby continues to grow and as I have more amniotic fluid building, it will be easier to see some things. First of all, good news, she gained 9 ounces. I’m thankful she is continuing to grow, even if it’s little by little. She is still falling behind in growth (now 4 weeks behind), but that is expected given the circumstances. She now weighs 1 pound 9 ounces.
Now for the more difficult news. We were told that they are seeing some problems in her heart. Her heartbeat still sounds good, but they said it doesn’t look like a normal functioning four chamber heart. They didn’t have any other details to give us and told us heart defects are extremely hard to diagnose with ultrasound. My doctor said only about 1/3 of heart problems are diagnosed by ultrasound because of angles and shadows and babies moving.
We were also told she has double cleft palate. This was probably the hardest news for me to hear. I had been praying that she would not have any facial deformities. I’ll be honest, I’m a little scared of how she will look when we see her. I know she will be my beautiful baby girl, but it still makes me nervous.
They also told us about a deformity to one of her hands. It looks like she is making the “hang ten” sign, pinky and thumb extended. The ultrasound tech said she was unable to tell if the middle three fingers are missing or if they are fused into a fist. We asked if possibly she was just holding her hand that way and the tech said she believes it is a deformity.
The tears fell uncontrollably as we watched the ultrasound. There was no noise, but the tears just kept coming. After the ultrasound we went to wait in a small waiting room before going to a private room to meet with my doctor. I tried to keep it together as I was surrounded by about six or seven women with their protruding bellies, I assume all expecting healthy babies. I sat holding Timmy’s hand and dabbing at my eyes. He kept wispering to me that he loved me and everything would be okay. Finally we were called back to wait for the doctor. Once the door was shut, my Timmy held me and I just sobbed.
When the doctor came in we talked to her about the findings the ultrasound tech had given us. We talked about how difficult it was to hear about these new problems. And then we talked about delivery options again. Throughout the pregnancy we have said we would like to go with a natural birth with drugs and avoid any induction or C-section unless necessary. My doctor told us that was still an option and was of course our choice; however, she felt it was important for us to have a better understanding of the potential complications.
We’ve known from the beginning that there is a possibility the baby could die during delivery. This had not been explained to us in any more detail, so I just assumed that meant her body might not be able to handle the stress and her heart would stop during delivery. While that is true, there are other potential complications to consider as well. The doctor explained that her little body literally may not be able to handle delivery intact. She suggested to a C-section to avoid this.
Originally I felt that scheduling a C-section meant we would be choosing when her life would end and not leaving it up to God. However, my doctor explained she didn’t feel it would be necessary to do the surgery until closer to my due date, probably around 36-38 weeks. A completely healthy baby born at 36-38 weeks is considered viable and has a good chance at survival. 38 weeks is considered the start of being full term. With that information, we’ve decided that a C-section is the best option for our baby in order to get her out safely and in one piece. Once she is delivered it will still be in God’s hands how long she breathes and how long her heart beats.
Each doctor appointment is hard and we feel that at each one God is telling us this is the road we are headed down. I’ll say it again, I believe He can still heal her completely. My faith in His abilities has never waivered. But each appointment feels like confirmation that we are headed down a road that does not include earthly healing for this child. We have been trying to process the new information the last several days. We have moments of acceptance and even joy in the thought that our baby will be in Heaven and not suffering or struggling here. We have moments of extreme fear and sadness too. How do you explain the feeling of sorrow and joy at the same time to someone who has not felt it? This experience has opened up all kinds of feelings and emotions that I can’t quite put into words. Over the past few days a thought will come into my head and I’ll just start crying. Tim has been on the roller coaster too this week. We are both up and down. We are both trying to be there for the other. We are both trying to process and feel whatever it is we’re feeling. We are both desperately trying to hold the pieces of our hearts together. And we are doing all of it side by side, hand in hand, as a team.
I don’t know how we’ll feel in the coming weeks. I’m expecting things will get harder once the C-section date is scheduled. I’m so thankful that we’ve felt God’s presence around us and He’s giving us peace. I’m so thankful that He gives us the strength to keep breathing and make it through each day. I pray that we continue to feel all that as we near the end of this journey and approach what will be the hardest part of it.