#30DaysofHope Day 23- Katey

We found out we were having twins on April 1st (I know...we thought it was an April fools joke too). We were only 8 weeks along so they didn’t tell us anything other than there were two babies in there. At our 12 week appointment, we had another ultrasound and found out that there were still two babies and that they were called Mono-Mono twins.

The dr told us that we’d have to follow up at a high risk clinic at the University of Iowa as these two shared the same sac and placenta. Then we were told not to google it. We left the office still very excited and didn’t really register what all we were told and just couldn’t wait to tell our families! Then, I googled it. And every emotion and fear filled me up. The girls were called mono-mono twins or momo babies. It is one of the most rare type of twins and their chance of making it to 40 weeks was very slim. This type of twins happens in about 1-10,000 pregnancies. It’s high risk as the chance of having cord entanglement or compression is very high.

We went and met with the Drs at UIHC and they told us all of the risks and what to expect. Then they told us, “we hope we see you again.” We were told that if we make it, we’ll be admitted to the hospital at 24 weeks and try to make it to 32 weeks. Every two weeks, we had to make the long drive to the high risk clinic hoping we’d hear and see two heart beats and that they were measuring ok. And we did! The appointments all felt like there was a shadow of gloom over them as they wanted to talk so much about the risks that Adam and I just had to tell them we were done hearing about it and to only tell us if something was actually wrong. We were so excited for this as these were our babies that we couldn’t keep living in this fear.

We had me all packed up and ready to be admitted at our 24 week appointment. I said my “see ya laters” to our families and to my nacho and then we left. At our appointment we saw the heartbeats and thought all was good. Then the dr came in. She told us that Lilly was growing at a smaller rate than what Nora was and that her cord was having issues providing enough oxygen and blood to her. They sent us up to be admitted, as planned, but we were met with a monitor and the labor and delivery team, and the NICU drs.

No one ever told us they thought we were going to be having the girls that weekend but now that we think about it, they definitely thought that. I remember the high risk dr coming in on the Saturday after we were admitted and said “there may be a day that we have to decide which baby to save and only one may make it.” Every day I had to be hooked up to a monitor to check the girls heart rate and watch for any concerning signs of distress. At 5:30, 1:30, and 9:30 I had a nurse come in and hook me up. The anxiety of being on this machine is unreal. Waiting to hear two heart beats, Lilly not behaving and usually needing and ultrasound to find hers almost every time, and then the occasional decel that would keep me on the machine for another hour.

Every Monday and Thursday I would go for another ultrasound to see how they were growing and what their cords were doing. The drs told me that our plan for delivery all depended on what these showed. Adam was able to be with me for the first one but then he had to go back to work. I remember walking to the first one by myself and being in the room just sobbing. I was so afraid I’d have to do this by myself. They told me that if they saw something concerning they’d most likely have to do an emergency c-section and I’d have to be put to sleep for that and be by myself in there. I couldn’t handle that thought. I was terrified every single day of having to make the phone call to Adam and our families telling them that something was wrong. But, each time I went into that room, I was told that the girls looked stable. We could live with “stable.”

A month went by and we hit week 28. 28 weeks had been my goal for them all along as I knew from meeting with the NICU drs that their chance of survival went from 85% to 95%. I went in for my ultrasound and Lilly’s cord looked a little more compressed. Each girl was showing more signs of distress on the monitor and the drs felt like it was time to plan a delivery. Adam and I were so thankful to have made it to then and be able to have some control over the situation and delivery. We knew that delivering at 28 weeks meant a longer stay in the NICU, but that’s ok. We could live with that. The day came, all went smoothly in the delivery and Adam went with the girls to the NICU.

Nora and Lilly were both very small when they came out but to us they looked like normal babies. They were pink, warm and breathing with assistance. These girls rocked their NICU stay. Yes, to say we didn’t have some set backs, rough days, and nights where we didn’t want to leave would be a lie. We had quite a few of them. I’ve lost count of the amount of xrays, blood draws, echos, head ultrasounds, and tube changes they’ve both had and that’s ok.

Nora was extubated and breathing with a CPAP machine after a week of life. I remember hearing her cry for the first time and telling myself that I’ll never take that little cry for granted because I remember every day where I would see her mouth and face look like she was crying but couldn’t make a sound. Lilly, being the stinker she is, extubated herself after 3 weeks of life. We weren’t there when she did it and getting there phone call was scary but not surprising knowing the type of girl she is! We went from different types of CPAP, back to stronger CPAPS, to wall oxygen and then now to home oxygen tanks. We went from tiny syringe feedings, to a feeding pump, to bolus feeds and then to bottles.

It took over two weeks for the girls eyes to open and for us to see them without plastic wrap over them. It toon 9 days to get to hold them and then one month to hold them together. Once we moved to the children’s hospital, I remember hearing the Drs say that we were getting closer to home and then when they finally came in and said we were ready, it didn’t feel real. But here we are...87 days later. We’re home and we’re finally feeling like a family.

Adam and I can’t thank the drs and nurses who were with me and who took care of the girls enough. They became family. They were advocates for us and shoulders to cry on when needed. They were there to tuck my girls into bed at night after we left. They were there to hold them while I couldn’t. They were encouraging of us as new parents to do whatever we could with them to help us. We needed to feel like their mom and dad and the nurses helped us do that. They are the reason we are snuggling here at home on our couch with our baby girls.

Maybe this is all too much information to share with everyone, but for me it’s a way to process and allow myself to grieve everything that we’ve gone through the past 9 months. For the longest time, I didn’t allow myself to feel excited or attached. I couldn’t bear that heartbreak of the “what if’s.” We were told from the beginning to take it one day at a time and not think too far into the future. But that future is now here and so are all the feelings I didn’t let myself feel. So thank you if you made it all the way through this.