Reflecting on this week, the word that comes to mind is overwhelmed. Overwhelmed for different reasons. The first being by how faithful God is. The next by how many emotions I have felt in four short days. And by how supported and loved we have felt in this storm. This week held some of the most brutal moments of our journey so far. Moments where I felt forgotten, scared, and desperate. Yet, in each of the moments, I know He was there. And for that, I am eternally grateful.
Last weekend was good. Daniel and Noah weren’t able to come see us, and we all missed them terribly. But we got to celebrate Val’s birthday! It brought so much joy to celebrate her with our family. (We were also missing Kim, Michael, and their kids.) We love Aunt Val!
Monday came quickly and I couldn’t wait to check in on our girls. I woke up feeling pretty nauseous but figured my morning sickness may be sneaking back up. I took some Zofran before heading to my appointment and thankfully was feeling a little relief by the time we got there. We ended up having a surprise anatomy scan. I loved getting such a long, close look at each of the girls. Everything looked stable—fluctuating fluid, stable blood flows, and some growth seen in both girls. Huge praises! Although Avery’s heartrate was pretty elevated, overall everything looked to be okay. I started feeling very flushed and sick again. I asked the sonographer to sit up for a few minutes and soon after Dr. Espinoza came in. He briefly looked over the scans and asked how I was feeling. I told him I’d been nauseous all day and felt flushed, and he said he noticed my skin was very warm. He finished the scan quickly and asked me to head upstairs to the assessment center. I could tell he was worried. He explained he wanted to be sure I wasn’t developing any early signs of infection. I stood up from the table and felt a large gush of amniotic fluid. Fear was creeping in and I felt helpless to stop it. I knew what would happen if my uterus was infected. I cried out to God, begging Him to save our girls.
After waiting two hours for a triage room, I finally got into a bed and was immediately sick. Dr. Espinoza came in a few minutes later to tell me my white blood count was elevated and he wanted to admit me for monitoring overnight. I remember wondering when God was going to step in and take control of this situation that seemed to be spinning out of control. I was put on Phenergan and fluids through the night. It was awful. But the next morning, we were able to have a brief ultrasound to check on the girls– fluid levels, heartrates, blood flows. Everything still looked stable and my white blood count had dropped significantly—no signs of infection. God was there. Although the night was pretty miserable, I am so thankful for my doctor’s wisdom and intuition. I know that had I not been on fluids all night, the amniotic fluid level would not have been what it was and could have affected the girls in a significant way. I was discharged later Tuesday still feeling sick but overwhelmingly thankful that Piper and Avery were okay. He was there.
I woke up Wednesday feeling stronger than I had in a while. I felt confident that the echo was going to show improvement in Piper’s heart. After a very long hour of measuring and observing Piper’s heart, the cardiologist came in to explain that her heart is not improving. Without going into too much detail, basically the lower muscles of her heart were damaged from the overload of blood she had prior to the surgery to fix TTTS and they aren’t able to relax when it’s done squeezing. She initially wasn’t going to look at Avery’s heart because at the initial echo two weeks ago it looked okay, but because Piper’s cardiac function was so poor, she wanted to double check Avery’s. I don’t remember ever feeling the feelings I felt as I laid back down to let the sonographer spend another hour measuring and observing Avery’s heart. I desperately wanted to hear from God. Was He still there? Was He hearing my cries?
The sonographer finished and the cardiologist returned. She said Avery’s heart looked “perfectly fine” and went on to explain that Piper’s may improve with more time and hopefully she would be able to tolerate the thickness/inability to relax. If she isn’t or if it doesn’t improve, she will develop fluid around her heart or lungs. She asked if I had any questions. I felt like I was falling backwards and I didn’t know when I was going to hit the ground. I couldn’t form a single thought or question. I made it to the car before emotionally breaking down. Why this? Why now? God was supposed to be with me and never leave me. Why did I feel so forgotten and alone? I spent the night desperately searching through scripture, pleading with God for Piper’s life, for her heart.
Daniel and Noah arrived this morning and it brought so much joy to see and hug them, but I couldn’t get rid of the fear. Instead of having our big “growth scan,” the sonographer explained that they were able to get their measurements from the anatomy scan that was done on Monday and briefly scanned through the usual—heart rates, blood flows, fluid levels, quick look at stomachs and bladders. Feeling overwhelmingly disappointed that we weren’t going to be able to check their growth, I watched as she measured Avery’s fluid level. It was significantly higher! Higher even than it has been since the initial TTTS diagnosis. And even in the quick scan, we saw her bladder fill with fluid, larger than we have ever seen it. He was there. There simply is no other explanation for her rapid improvement than God.
We later got to sit down with Dr. Espinoza and talk to him at length about the echo. I was able to ask him my hard questions and he honestly answered every one of them. He expressed the same concern as the cardiologist, that Piper’s cardiac function is not improving, but in the same breath said that it may just be taking her more time. We don’t know exactly how poor the condition was prior to surgery. All we know is that the disease took its toll on her heart. It was having to accommodate for such a huge overload of blood, and it is still trying to recover. He also explained that unfortunately, if her heart isn’t able to recover and she develops fluid around her heart or lungs, there is no intervention that they are able to do to help her. Please pray with us that her heart would miraculously heal and soon! He was very pleased with Avery’s progress—her fluid, the size of her bladder, and her cardiac function. And he also pointed out that they are both growing. Piper is in the 70th percentile and Avery is in the 3rd—11 and 7 ounces. He concluded by saying he is “cautiously optimistic.”
God was there. He had never left me. This journey is hard and there are moments where I am frightened to my core. But when the winds blow and the waters grow rough, He reminds me, “Don’t be afraid, I am here.”