by Jade Edwolt on the birth of her twin girls, Keeley and Kambry at 22 week and 1 day gestation. Currently the youngest surviving twins in the world.
I’ve been thinking about their birth these last few weeks with their birthday coming up in the next few days. The first few days, I had never seen anything like the way Keeley and Kambry looked the way they did when they were born; the pain of seeing them that way and that they were thriving basically clashed together for me.
The NICU team always made us feel really empowered, they basically held our hand every day. I was lucky enough to be at the girl’s bedside pretty much daily at first then after those first few weeks, if not daily, then every other day or part of the day and then the other part I would spend with the older kids. I would call the NICU when I wasn’t there, but the panic never went away. I will be honest that I was having night terrors. I would wake up in a panic, a few times dripping in sweat, thinking of all the horrors that could go wrong and dreaming that I would wake up and the girls had both died. I felt like I was in such a fog, that I was just waiting. I believe in God. I believe in the plan God had for them was great and I believed and hoped that every day would be great. At the same time, I also believed that every day could be their last, as I knew how fragile they were.
It was really hard to believe in God and that he had a plan, but to also see how fragile the girls were and knowing that they could die at any minute. No parent should ever have to see or feel that. The girls looked like complete aliens at birth so that was hard to see. When family came to see the girls, the instant shock on their faces were tough to take in. I never questioned whether they would accept the girls the way they looked but my heart ached for our family to see them look this way and so fragile. Now that they are going to be a year old, it’s really unbelievable to look back at how they looked when they were born. You would never believe it looking at them now.
We are looking forward to celebrating their first birthday. The girls have endless possibilities with support. Keeley and Kambry are surviving all the odds that were stacked up against them. They survived brain bleeds and TTTS. They survived pneumonia, sepsis in the NICU, PDA’s & surgery to close the PDA for Keeley. Someday when the girls are older and look back at their journey, I pray they truly know that no matter what someone says to them or how someone treats them or what their social status is, no matter where they live or anything that comes their way – I just hope that they can be really proud of who they are and know what their strength is because they have taught me so much. They have made me a stronger person, they have made me become more independent, they really made me believe in myself again. That may sound silly, but I think that not only did God use me to be their mother, but He also called the girls for a purpose. There’s not a greater feeling than living in your purpose, not only being Keeley and Kambry’s mom, but also Koy and Kollin’s mom. I for so long have struggled with feeling as though I have to live up to expectations of others. I have grown to learn not to worry about what others think and only focus on what’s best for my kids.
There are everyday challenges of extreme micro preemies. Every parent is called by God for a reason and I’ve admired parents of children who are medically fragile/medically needy for years. I could never have imagined what it would be for myself to be a mother of not only one but two medically fragile/medically needy children. It’s not for the weak or maybe it is and God uses them to make them stronger.
Everything is a challenge, every aspect is a challenge, what you do, who you hang out with, where you go … even doing something like going to the grocery store is just not that easy these days. Thinking about infection control and changing my clothes at the door, washing our hands at the door, these things we really never had to think about before. There are also challenges with health insurance and I feel like for us it’s even more exceptionally difficult as we have two not just one child. When you’re born before what most and even insurance considered “viable” there are a lot of questions with insurance about paying for things.
We have to make really big decisions like not having friends and family come to visit them because they have a runny nose. With anyone else, if you have a runny nose, you can just pop in their house and see them but if you have children who are immunocompromised, you have to think of these things. You really have to be a critical thinker.
I have been a huge advocate for the Preemie world, TTTS community and the PPROM community. Some of the things aren’t so easily described or laid out for you.
We made a decision to homeschool one of our children because the risk was bigger than what we could take on this year. Having Koy in a kindergarten classroom exposed to all those germs then bringing them home to the girls was not an option, this is our life right now, going into our first RSV season this is a critical time to make sure the girls health is protected and stays as stable as possible. Our friends and family in our community have judged us for making decisions like that. For everyone that is reading this, I want you to know that you should never feel like you have to question your role as a parent because someone else questioned you when they have never lived it.
Some of our challenges we face on a daily basis could continue to be part of our lives for the years going forward. We have no idea of what could come our way. The girls are doing well, they are beautiful, they are soft, they are smart, in a perfect world in what most people compare them to – they are doing great.
For the future, it’s kind of funny, when the girls were born people would bring up all the time; “Think about what the girls are going to be like when they go home.” The first few weeks when the girls were born, there was really no thinking past the day or the hour because their life wasn’t guaranteed. Even halfway through their NICU stay we were reminded by our NICU team that it wouldn’t take much to take their amazing story of survival to make a turn for the worse. Every day of progress mattered.
The hope that I want to bring to other people is that 22 week babies can live somewhat normal lives, they can love other people, they can show emotion, they are capable of things. Today Keeley and Kambry are capable of rolling around on the floor! Keeley is attempting to crawl and is trying to eat solids. They play with their siblings and are capable of so much more than what the world gives them credit for. I really hope that the definition of viability can start to change for all hospitals. I’m educated and realistic in knowing that the change takes money, education and the right tools. It takes a whole team to save the 22 weeker, but it also takes the parents to want to take on the responsibility of what comes with a micro preemie. It’s really a lifestyle. Even before the girls were born, one of the many conversations I had with my doctors and the NICU team included the lifestyle you could gain by saving a baby (babies) born so early. Some parents make the choice of not intervening and that’s what the family decides is the best fit for their family. It doesn’t make them a bad person, it’s just the best thing for their family. I knew right when the girls were born and we agreed to intervene that hard, traumatic, stressful, challenging, scary things could come our way and it was something I chose to accept hands down. The minutes leading up to their birth, many emotions and things were filling my head. I fully accepted caring for not one but two babies with significant disabilities. This is the hardest journey that I’ve ever faced, and I don’t know anyone that has this hard of a journey. I know other families with medically needy children, but I’ve never heard of anything like this. I can’t speak for other families with medically needy children, but I have an understanding of what they feel like and I have so much respect for what other families may be going through.
I will never stop raising awareness for viability at 22 weeks because there was a point where I was told by a few different health care professionals from different hospitals that 22 weeks was not viable and that if the girls came at 22 weeks they would die. I remember that pure fear, the shock and the overwhelming sadness that became a part of me the moment my water broke. But also, the strength I had to just “have” in order to not stress my body out. I just want to educate other moms and other families so that they are 100% aware that IT IS possible that at 22 weeks, yes your baby could have significant disabilities or issues and you could choose to intervene and your baby could still die but that you have options.
The night that my water broke, I was exactly 22 weeks pregnant and I was hoping to make it to the hospital and stay on bed rest for a number of weeks. I had heard of other pregnant women whose water had broke, went on bed rest and were able to stay pregnant for a number of weeks. I never considered that the girls were going to come that night or the next day, or that they were going to die. After I was admitted into Labor and Delivery, there was a heavy possibility that the girls were going to come and that they would be still born or that they would pass in utero from infection so I somewhat felt that if the girls did come that they would pass. My health care team and I talked of every possible outcome if the girls came that night or the next day. I remember telling my team that we were going to celebrate, we were going to kind of have a party in the room, no matter what we were going to bring the girls into a calm environment. I remember having to specifically make plans for what would happen after. Burial…. early on after being admitted the team also purposefully made sure to ask me what the girls’ names were. I appreciated that more than I could even say. It made them “real” and gave them a name no matter what happened. Each time I was checked on by the University of Iowa staff, the girls were then spoken about as if they were in the room and already making a huge impact. My team also continued to make sure I had support. I was thankful to have my mother and grandmother by my side. To this day they are reminded regularly how thankful I was to have them there holding my hand, encouraging me, looking at me directly in the eye to give me strength. My grandma and my mom both said I kept saying “I can do this.” and “I was scared for them”. The University of Iowa always said to me that they would do whatever was needed, that they would be there by my side whatever decision we made, that they would back me up and always be there. They never backed down from the will, the heart, or the ability to try to save them.
The impact that the NICU made on me as a mom is really hard to describe but I will do my best. Prior to having Keeley and Kambry, I was a huge push over. I felt like I had to be a people pleaser. I felt I had to mother in a specific way to have other people see me as a good mom, I always felt like I had to do what the other moms were doing. I felt like a great mom prior to the NICU. Sometimes now I question myself if I am making the right decisions. The only reason I question myself is because I want to be the best possible parent to all 4 of our children. I’ve had to make sacrifices that I never thought I would never have to make. The decisions I’ve had to make now are required in order to keep the girls healthy. I feel a sense of relief not feeling like anyone is going to tell me what I can or cannot do. People still judge my decisions because they have no idea what I go through as a mother but just because they are curious and I guess for the first time I feel like I am making decisions based on what we want for our kids, not what the popular thing is or the normal thing is but what’s best for our kids. Now that we are kind of isolated, I can make those decisions and not feel bad about them. The NICU has made me become more independent and it’s made me stronger than I ever thought I could be, and though it’s not what I would have ever wanted I am still thankful for the journey as it’s taught me so much.