Today’s story of perseverance comes from Kelsey Poulsen and her experience with twin pregnancy, early delivery, out-of-state NICU, and more!
Mom to: Dean (19 months), Graham & Wells (5 months adjusted, 1 month corrected)
Briefly describe your experience through your challenging delivery and NICU experience with your twins.
On September 1st 2022, Chris and I found out that we were having twins! We were completely shocked and overwhelmed but excited to be welcoming 2 more boys into our little family. A few weeks later in follow-up appointments we unfolded the news that our twins were identical and sharing the same placenta (mono-di twins). With this news came warning and caution that sharing the same placenta can lead to rare complications. Because of this, we would be monitored weekly throughout our high-risk pregnancy. In November 2022, (24 + 1 weeks pregnant) during our ultrasound, we were showing signs of twin-twin transfusion syndrome (TTTS); this was one of the complications we were told could occur with mono-di twin pregnancies. We were asked to come back again for a follow-up. Because of Thanksgiving, we were not able to get back in until Friday. Friday morning came and we anxiously went to our doctors appointment. They told us our biggest fear was now reality, and worse than we expected. Our twins were in stage three of TTTS and baby B was in heart failure. There is a new innovative surgery where a surgeon can go in and laser these sharing vessels in the placenta to stop the transfusion and allow you to carry on with your pregnancy. There are very limited amounts of surgeons who are trained in this new technique, and none were in Utah. Because of our early gestation with the twins, our doctor told us that the surgery was our baby's best chance of survival. The only surgeons available to take on our emergency case over a holiday weekend were located in Portland, Oregon. Our doctor had informed us that because of the severity of the TTTS, if we were not operated on in the next 24 hours, he feared we would lose one, if not both of the boys. The next thing we knew, we were buying tickets to travel to Oregon to go save our baby’s lives.
We stopped at home and packed a quick overnight bag, said a brief goodbye to Dean and headed to the airport in hopes that we would still have two heartbeats when we landed. We got to Oregon at 2 am on November 26th. Just hours later I was being operated on. The surgery was so painful and hard on my body that it sent me into labor. We were able to stop contractions and stop the labor from progressing. I was closely monitored for the next 24 hours. We initially thought the surgery worked and we were making plans to return home Monday morning. Sunday rolled around and we received more bad news, the surgery had failed and we needed to make some hard decisions. We elected to try the oblation surgery again on Monday morning. As Sunday evening progressed, that was no longer an option because of how fast the babies were continuing to decline. Our next best option was to do a selective reduction of one of the twins to be able to continue on with the other twin giving us better odds to keep even one of the babies. This seemed like the best option. Both babies were struggling and most likely would not survive delivery at 24 weeks gestation. Selective reduction would stop the transfusion and allow us to continue our pregnancy growing one of our babies a bit longer increasing the odds of survival. We were faced with impossible decisions in this moment. We had to look at every case scenario, knowing that anything was putting me and the babies at high risk for failure. Moments before we were supposed to head into our reduction surgery, Chris and I made the impossible decision to give both of the boys a chance and do an emergency C-section instead. We knew taking the babies out this early, they would have low rates of survival, and if they did survive, they would have an unbearably hard journey ahead of them, not to mention we knew that we would be stuck in Oregon (away from Dean, away from friends and family) until they were discharged to go home. There was so much uncertainty, but we couldn’t give up on them.
November 28th 2022, we delivered our sweet baby boys, Graham-1lb 6oz and Wells-1lb 4oz via C-section in Portland, Oregon. Both of the boys had to be resuscitated upon delivery. I was not able to see my two beautiful boys for 24 hours after the delivery. They were in too fragile of a state. We got to hold them for the first time one week later, not knowing if that would be the first and last time we ever held our sweet baby boys.
On March 13th, 2023 another miracle happened. We got transported back to Utah (our home) to have the boys finish out their care. We are now at Primary Children's Hospital and reunited with our strong little boy Dean. The twins have been in the NICU for 5 months now and we still have a long way to go. Graham and Wells have had such a hard journey and continue to fight. We have spent Christmas, New Years, Valentines Day, Easter, all in the NICU by their side. Every day has been hard. Every day has been a struggle. They have had multiple blood transfusions, IV’s, PICC lines, heel pricks, spinal taps, catheters, urine samples, surgeries, blue codes, breathing tubes and more. They continue to fight and defy odds every day and to say I’m a proud mama is an understatement. I’m so grateful for these little peanuts and every hurdle that they have overcome.
Currently (May 2023) Graham is on high-flow oxygen and weaning slowly, soon we will be able to start bottle feeding. Wells is still intubated but is working toward extubation. We are still unsure what our future looks like and we still have hurdles to cross and many more long months and holidays to look forward to in the NICU, but we are getting the best care and we know our boys are strong. This journey has been impossible, but we are grateful that Graham and Wells chose us to be their parents and that they keep choosing to fight. I wish no mama to know the pain and suffering of the NICU and no mama to know the hollowness of being separated from a growing toddler for months on end. We are so grateful to friends and family who have stepped up and shown up for us and helped us with Dean, so that we could be there for our twins in Oregon when they needed us most. I’m so honored to be a mama to 3 warrior boys!
Who or what helped keep you grounded through this challenging experience? What about currently?
None of this has been easy but Chris, my husband, has been my rock! He has been by my side for every hard decision. Graham and Wells give me perspective, they are going through the hardest part of all of this and if they can do it, I can too.
How did you balance the needs of your family and yourself while still allowing room for coping with these unpredictable challenges?
Thank goodness for FaceTime and family! We tried to normalize our nightmare of a situation as much as possible. We recorded ourselves reading bedtime stories and sent lots of videos so that we could still be a part of Dean's everyday life. Our religion and faith in God and our knowledge that families can be together forever has given us perspective throughout this whole journey. We are still navigating how to be present and cope with all of our challenges that we still are facing. We still cry ourselves to sleep or sit in silence and still get angry. This journey is impossible and we are just taking it one step at a time, one day at a time.
What advice would you give to parents in a similar situation (or really any parent who is dealing with uncertain challenges)?
Be present. If this journey has taught us anything, it is that each day is a gift and life changes so fast. We can’t control the outcomes but we can control our reactions. Stay present in your journey. Let people help you. The NICU is so hard and no one really knows what it’s like unless they’ve been there. There are so many resources out there. Being in Oregon, away from friends and family we had to rely a lot on strangers and resources. This support is what helped us get through those really tough times. Keep going mama, just one hour at a time.
What has this experience taught you about resilience?
I am stronger than I ever knew. I never knew I was capable of dealing with so much until I wasn’t given a choice. Learning to navigate this situation has just made me want to be more of an advocate for all of my boys and show up even when it doesn’t seem to make a difference. I am more resilient because I keep showing up. That’s all it takes. Just one foot in front of the other showing up day by day builds you into resilience and engraves it into your personality.
What is something you wish others understood about having preemies or NICU children?
Every. Single. Story. Is. Different. Please do not “compare scars”. Listen. And just love. It doesn’t matter how long your journey is or what you went through, everyone’s NICU journey is hard, whether it is one day or years and years. Give grace, be patient, and let any NICU mama know that you are proud of her and she is strong and her baby is so special.
Update on all of your kids and family life:
Dean is 19 months old and so happy to be back with mom and dad. Chris and I still go to the hospital every day, it just looks a little different. We are back to work and taking care of a toddler, a house, cooking, cleaning and navigating our responsibilities on top of being NICU parents. Graham and Wells are in the best care at Primary Children’s and we feel lucky to be there. They are both slowly continuing to progress and get better. Right now it looks like we will probably be taking Graham home a lot sooner than Wells. They both have a long way to go and we anticipate being in the NICU for several more months. We are grateful to be surrounded by friends and family and to be getting back to some normalcy. Our twins are both now over 9 lbs and continuing to defy odds. Dean has not met his baby brothers yet and probably won’t until they are discharged from the hospital. He loves seeing pictures and videos of them and he is already the best big brother. We are grateful for how far we’ve all come and we look forward to the day when our whole family gets to be together.