From a Mother’s Heart

As a 35-year old mother of three who has I’ve experienced both a normal pregnancy and one with many complications, I feel I’m a prime example of the phrase that no two pregnancies are alike. My daughter Katie, who is now 2 ½ was born at 41 ½ weeks via c-section because she did not want to come “naturally” even after I was induced. My pregnancy with my twin boys Colin and Jacob (a.k.a Jakey) on the other hand was anything but normal. From the moment my husband and I learned that we were having identical twins boys who were Monochorionic/Diamniotic (meaning they share the same placenta but have separate amniotic sacs) we were informed of the potential for complications, albeit rare, due to Twin to Twin Transfusion Syndrome (TTTS).

While we were told about TTTS, we were also told it was uncommon and unlikely to occur, so we didn’t think too much about it. For some background, TTTS occurs only in identical pregnancies and is when the babies share blood vessels resulting in one twin having more amniotic fluid than the other. Twins who are diagnosed with TTTS rarely go full term and are almost always delivered prematurely. During a routine ultrasound at 16 weeks, one of my Maternal Fetal Medicine (MFM) doctors diagnosed the twins with TTTS. In addition to the TTTS, we also were faced with Jakey being growth restricted as he had a significantly smaller portion of the placenta. It’s amazing how quickly you learn about these different types of conditions when you’re faced with them personally.

Everything that could have been done for the twins was done. I was sent to specialists and they performed a laser ablation surgery which gave the twins more time to grow. My entire pregnancy was literally spent either at doctor’s offices 4 times a week or at home where I sat and rested. It got to the point where everyone at the doctor’s offices knew me personally and I had my own sonographers and gynecologists that worked specifically with me. I was blessed to have them.

There was a time at 24 weeks when I had to have a talk with NICU team to discuss the possibility of delivering the twins before 30 weeks. We thought that we were going to have to deliver the boys that day because they saw reversal of blood flow in both of the boy’s umbilical cords. I always knew that the possibility of delivering early was high, never did I think that my husband and I would need to decide at that moment what to do.

Our boys up until the very end were my “wait and see” twins. Waiting and seeing always benefited us. When the boys were in utero, they were very much like me, “let’s wait and see, we will let you know when we need to come out.” My gut told me to go with it, I talked to my Maternal Fetal Medicine Doctors, consulted NICU and based on what they could see there was no harm in waiting to deliver the boys. However, the stress of waiting and knowing that if I feel the smallest thing different, I needed to call and let someone know weighed heavily on me, but it was better than having the twins fighting alone. It was better for the 3 of us if I was fighting alongside with them.

About a week before I was scheduled to deliver at 32 weeks I had my final checkup by Maternal Fetal Medicine and NICU. NICU went as well as I could have imagined. The doctor who met with me was with me since the middle of my journey with the boys. She knew I understood the challenges that we were facing, and we both knew it was no longer about me when the time came, it was about the boys. She said that she would need to give me magnesium to help protect the boys brain during delivery. We both said in our own way that it wasn’t about me, it’s about the boys. She answered all of my questions, even the ones that weren’t so important like, can my 15-year-old cousin come and visit the boys in NICU? The answer was no, but I understood why. I always had in the back of my head that even though I wanted my family to meet the boys, our miracles, that other families had their own miracles in the NICU and that it wasn’t about me. I had to think about other people each and every time I stepped into the NICU. I kept on thinking not only about my boys but other people’s babies that fought so hard to get here. Would it be fair to those kids if I came in feeling under the weather and exposed them to something when they came out of their isolate? We received the good to go from Maternal Fetal Medicine and NICU.

The next time I was scheduled to be be back in the hospital was for when my C-Section to deliver. Well, I sensed something wasn’t right the very next morning and texted my doctor. I was going into the hospital anyways because I was receiving my final steroid shot to help the boys grow, because they were going to be delivered at 32 weeks. It was day 31.1, and little did I know what I felt was what I had been waiting for these past few months.

I received my shot and almost immediately after, I think the receptionist noticed I was on edge told the sonographer she needed to take me ASAP. This is how well your office staff gets to know you when you are there practically 4 days a week. Within 5 minutes of being scanned I was in the OR. Within 10 minutes I was prepped, my anesthesiologist told everyone to stop talking and I was going under in 5, 4, the iodine splashed on me 3, 2 and I was out.

​

My amazing Doctor. Dr. M who has been with me since the beginning delivered the twins within the same minute because she needed to get them out. I thank God every day that I was knocked out. I secretly wanted to be knocked out when they were to be delivered. I would be able to be awake knowing that something was happening to my boys and I wasn’t able to do anything about it. I always knew it would be better for me to wake up and know what happened instead of living in the moment what was happening. When I woke up Dr. M, Dr. H, Dr. S (NICU) were all there next to me telling me I did a great job. Dr. H told me that I saved the boys lives that day. Which I will never take credit for, it was always a team effort.

Fast forward to the weeks ahead. Colin (Baby A) was doing great, in fact they thought he would be able to come home within a month. which did indeed happen. He was the bossiest of the twins. He always knew what he wanted, when he wanted it, and if he didn’t get it right away everyone in the NICU would know about it. Same goes to present day. The boy knows what he wants.

​

Jakey (Baby B) on the other hand was much more delicate than his brother. Jakey was the reason that him and his brother made it. Not only did he keep them alive in utero, but he let me know that he was in distress. Jakey was my old soul. He looked very much like baby Yoda. He had the blondest hair you would swear it was white, and he was very wrinkly. When I first saw him in NICU the nurse later on told me I almost got her chocked up because when I saw him, I lost it. He was my “we don’t know”. I was ok with not being able to touch him I was ok with having to follow the rules of the NICU. I wasn’t going to fight anyone, because I was done fighting. My job now was to rest and recover and come and visit my boys as often as I possibly could, which I did. I did daily Kangaroo care, talked/read to them, fed them (when we could), and learned how to change them.

My boys were born at the beginning of COVID-19 pandemic so the rules were constantly changing as the pandemic got worse and we learned more about it. We were still trying to understand what it was and the impact it had not only on adults, but on children, and newborns. Because of how bad it was getting visitors of the NICU were no longer allowed other than parents. Which I was relieved about. Yes, it meant that my parents couldn’t go and see the boys, but the boys and I fought hard for them to get here. I would be so upset if someone asymptomatic came into the NICU and exposed my boys to the virus. As it was my husband had a cold when the boys were born. I, I meaning me only allowed him to see the boys once he felt 100% better. If not for our boys but for other people’s kids.

​

I was always afraid of the NICU, but NICU soon became my second family. Colin and Jakey’s nurses became a part of my family. So much so that Jakey’s primary nurse is his Godmother. NICU is there to support you. Ask questions, no matter how small or big they are. My husband and I were told that the NICU can be a bit of a roller coaster ride and that preemies can be unpredictable. Jakey needed a blood transfusion within the first week to help him with his oxygen levels. I told the doctor doing rounds that I wanted to give him my blood because we were a match. The doctor doing rounds who was a resident said she would look into it, but my main go to nurse told me very nicely that I wouldn’t be able to because I just had major surgery. That broke me, the nurse saw that it broke me, but even though she didn’t have Jakey that day she had someone cover her baby and she stayed with me as I cried. She answered my questions, she was there to comfort me. She became my person.

NICU is everything that you want to take out of it. Dan and I learned so much. We invested our time in the NICU even though we had our little girl at home. It was important for us to learn how to take care of our boys and have an active part in the caring of them. It wasn’t just us going there 30 minutes a day Kangarooing and leaving, we would spend hours there each day learning the daily care that they need, what the alarms meant and knowing when it was a routine alarm or one that was more serious. Get to know your baby, ask questions, respect the doctors and nurses when they say you can’t do something. Yes, it’s hard, it’s a hard pill to swallow but know and trust that they are doing it because it is what is best for your baby. I can’t tell you how many days I just sat in-between my boys and would just look at them because they had had a restless night, or just needed to be still during the time I was visiting. I was fine with that. It was all about them and what they needed. Believe in yourself, believe in your child/children, believe in your doctors, nurses. There is no such thing as a stupid question. If you don’t ask a question, you won’t know the answer. Take your time, do home, process, write questions down if you need to. Most importantly even if it scares you, hold your child. My babies were the smallest babies that I had ever seen before. They looked so fragile, but I had so much support from the NICU team that I held them, both, together, at the same time. One of the best memories that I will cherish for the rest of my life.