Our story starts with our first ultrasound for our first pregnancy at 8 weeks. We found out we were having twins! I just remember seeing a lot of white on the screen and holding my breath in anticipation of the tech saying that something was wrong. But instead she said “well you have a couple little nuggets in there.” We were in shock! They knew immediately that they were identical because they were sharing a placenta. Shortly after we learned that this also meant that they were at risk for Twin to Twin Transfusion syndrome. We were told that we would have to have ultrasounds every two weeks starting at 14 weeks to monitor for TTTS. At our 16-week ultrasound we found out that we would be welcoming two sweet boys into our life! We made it past 24 weeks when the chance of developing TTTS was higher and thought we were in the clear! Other than there being two babies, it seemed like a pretty uneventful pregnancy. I felt great, the boys were growing perfectly. But that all changed at our 28 week appointment.
In mid-July 2019, my husband Dylan went to Fort Carson for his 2-week annual training for the Army National Guard. My parents came into town to visit while he was gone. I was looking forward to taking them to one of our ultrasounds at the perinatologist to see their grandsons. On Tuesday at 9 in the morning we went to my 28 week appointment. I remember driving there in a state of ignorant bliss, no idea that an hour later my whole world would be turned upside down. During the ultrasound the tech immediately noticed that there was a large fluid discrepancy between the boys. Ryan, the recipient twin had lots of fluid, while Mason, the donor twin, had very little. They immediately called down to Children’s to the Colorado Fetal Care Center for a consult and I had an appointment scheduled for the next morning. My parents and I were in shock as we drove home and I had to make the hardest phone call of my life to my husband to let him know that things weren’t good and he needed to come home. He came home that night and the next morning we went down to Children’s. After a long ultrasound and a fetal echo, the boys were diagnosed with stage 3 TTTS and starting to show signs of stage 4. TTTS has 5 stages where stage 1 is a large fluid discrepancy between amniotic sacs and stage 5 is the death of one or both twins, so it was a pretty severe case. We were beyond the point where they could try to close some of the connections via laser surgery, so we were told that I would be admitted for continuous monitoring and get 2 doses of steroid and deliver about 48 hours later. Mason had different plans however. I started having severe contractions at about 1 in the morning, and despite medication to reduce them, Mason was having consistent late decelerations with each contraction. At 3:30 in the morning the attending let me know that it was time and they were born less than 30 minutes later just before 4 am on Thursday. So, between the ignorant bliss of thinking that everything was ok before my 28-week appointment and the boys’ birth was 43 hours. It was the biggest whirlwind of our life.
After the hustle of surgery was over and getting to quickly peek at the boys on their way to the NICU, I was taken back to my room to recover. Once I was settled, Dylan hurried over to the NICU to check on the boys and I was alone. The nurses came in for their interval checks, but it was just me. Feeling like how could this possibly be real life? I didn’t realize how much that moment impacted me until I was preparing for my c-section with my third son when I was sitting in my OB’s office crying over the thought of not getting to hold him or having him taken away – I was still feeling that pain from the first hours and days in the NICU.
My in-laws brought us donuts in the morning my twins were born and I remember taking a bite and my first thought was that I would feel the boys start kicking because they always wiggled when I ate sweets. And then my heart sank because they weren’t inside me anymore, but they were supposed to be.
It was three days before I was able to hold Mason and a week before I was able to hold Ryan. Mason kept us on our toes with an unplanned extubation while I was holding him triggering them to call a code blue. 24 hours later he was taken to the OR for emergency surgery for a bowel perforation. He had an ostomy for 8 weeks until he went back for surgery. Following the second surgery, however, he developed a central line infection that spread to his blood and lungs setting him back in his respiratory progress. Talk of a trach and g-tube started, but after a final round of steroids Mason made a huge leap and weened down to low flow. Meanwhile, Ryan had a couple steps back with the initial attempt to extubate him on his second day of life. He ended up on an oscillator and on nitric oxide for about a week.
He steadily made big gains after than weaning to low flow by around 34 weeks gestational age and was our feeder-grower until he discharged in mid-October – right around his due date. Mason took another month to be ready to go, but we finally walked out of the NICU for the last time with both of our sweet boys on November 15th. We had watched so many other families walk by our room with their sweet kiddos for the last time and yearned for that moment. It felt like it would never come. And then it DID! That moment felt better than I could have possibly imagined.
Our NICU experience was the most challenging, devastating and transforming experience of my life. We were in the NICU for 114 days before we finally went home, and during that time, I only went 1 full day without seeing them. And while it was exhausting to be there for 12-18 hours a day every single day, I feel so fortunate for to have been in a situation that allow me to do that.
When you think about becoming a parent, you expect to be with your baby all the time. So, when you are away from them, it is a strange feeling of wondering, am I actually a parent? Is this real? Are those really my kids? And even though we were there every day, it was very hard for us to feel bonded to them. At the time, I thought that I was. I cared about them, and worried about them, and spent every day with them, but I didn’t realize how long it took me to bond with them until I had my third son and I realized how quickly I bonded with my third son, Owen, compared to my twins. But I don’t think that is surprising. While I was excited to see my twins and touch them and hold them for the first time, it wasn’t what I had hoped and dreamed for when becoming a mother.
There are wires and alarms and tubes everywhere. And while they may be cute in their own way, they are not the chunky, peaceful, newborn that you imagine curled up, sleeping on your chest. All I wanted to do was hold them and snuggle them and nurse them, but I couldn’t – the first few days all I could do was cup their head and hold their feet, with my arms in the isolette standing there with swollen tired feet, pain in my stomach from my incision, and tears in my eyes. Honestly, I would finally walk away when I was just too heartbroken to stand there anymore.
And then we could finally hold them and it was wonderful. Those moments of finally getting to kiss our sweet babies and see them lying on our chest after days of waiting were so amazingly, and inexplicably sweet. But days turned into weeks and weeks into months and a lot of days, despite being there all day and having that time, I didn’t even want to hold them. I didn’t want to sit there by myself with the deafening sound of the CPAP in my ear, staring at the monitor in fear that they will brady for hours on end. I just wanted my life to be different than it was. I felt so much sadness and guilt every day. I felt guilty that I wouldn’t want to hold them, or I felt guilty if I only had time to hold one and not the other, so sometimes I would just not hold either if I didn’t have time to hold both of them. I also had a really hard time figuring out a good schedule for myself that worked around care times and pumping and trying to fit in a meal and being available for rounds.
The nurses, and providers encouraged me to be involved and to advocate for my babies – and I definitely did. I was there for rounds almost every single day. And while I absolutely felt that my thoughts and opinions were heard and considered and validated during rounds, overall we were not in control of their care. And that’s not necessarily a bad thing! I can’t emphasize enough how in awe we were of the care and skill of the whole team that took care of our boys. The NICU specializes in growing these babies to get them home and thank God because that is way beyond my scope as a parent. But at times, it didn’t feel like they were my boys- it felt like they were babies that, while following strict rules to care for them, I was supposed to love deeply and devote all my time and energy toward with the hopes that one day they would be big enough and strong enough to come home and then they would be my babies, but they weren’t really mine yet.
And truly I am so wholeheartedly thankful to the bedside nurses who helped us to slowly overcome those feelings. Our primary nurses were the shoulders we cried on, the ones who could make us laugh even on the really hard days, and the ones who could make us feel like parents because they helped us to see past the lines and monitors and tubes and told us how sweet and adorable our boys were even when our family and friends were too afraid to touch them. That is just another thing that you grieve – you look forward to your family getting to snuggle and love on your newborns, but our parents didn’t hold our babies until they were 10 weeks old because they were so afraid to hold them. We tried hard to love our boys, we worried about them constantly and tried to convince ourselves that we really were their parents. But at the same time, we had to release control of their care to other people, and that is so unnatural. I feel like many providers in the field know that, but the way that the tension feels in your heart is something that I believe can’t truly be understood unless you have been there.
While in the NICU, I was able to connect with another NICU family in a similar situation and I also had a mentor through Children’s Hospital come meet with me. I was so grateful for those connections because often those conversations with strangers were way more powerful and reassuring than conversations with even my closest family and friends. Our family, especially, didn’t want to see us hurting and wanted to try to say something to make us feel better, but we were hurting and there wasn’t anything that they could say to make the pain and sadness go away. It’s just hard, every single day was so hard.
When Mason was still admitted and ready to be discharged, we fought to be discharged on a Friday night instead of Saturday morning so that we could have a whole weekend before my husband had to go to work that Monday. We were asked “you have already been here this long [114 days], what is one more day?” And while I can understand why they would think that, they need to understand that it never gets easier. It’s not just one more day. It’s another day of being away from home, another day of suppressing our parental instincts and letting other people be in control of our babies, another day of not getting to snuggle up on the couch and just be together as a family because the cords don’t reach, and another day of walking out of those hospital doors without our babies. That feeling is so unnatural, and it never gets easier – I would say it just gets harder and harder because as you do start to bond and become more attached to your baby it hurts so much more to leave them. The beginning of our time in the NICU was mentally and physically draining, we were running on adrenaline and we were tired from hearing all the alarms and standing up at the isolette and just the roller coaster of good and bad days and good and bad moments that many families describe. But a few months in was hard in a different way. We were more bonded to our boys and just becoming so worn down and tired of being there. We were starting to feel more protective of them and more comfortable participating in their care. They were also nearing being ready to go home so they weren’t as fragile as they were when they were first born, so we were just ready to take them home and stop having their care controlled by someone else.
We did fight that last fight and we discharged in the evening of Friday November 15th – and it was one of the sweetest days of my life. We had watched so many other families walk by our room with their sweet kiddos for the last time. We imagined how wonderful that moment would be and yearned for that moment more than anything we had ever wanted. It felt like it would never come. And then it DID! I remember that whole evening like it was yesterday. Removing the pulse ox and monitor wires, getting them dressed in their matching outfits that we picked out for them when we found out we were having boys, loading them in their carseats, walking down the long NICU hallway and out the doors, riding down the glass elevator with both our sweet boys, walking out the double glass doors of the hospital and to the parking garage, and finally driving away – driving home. It was so familiar since we had walked that walk and driven out of that parking lot probably 200+ times except this time we were actually going home. We arrived at our house to balloons and signs and a big group of friends playing “The Boys are Back in Town” ecstatic to welcome us home at last. I still can’t listen (or even think) about that song without tearing up. It was a moment that I will cherish forever.
But the journey didn’t end there by any means. And while it was so sweet to be home, it was also very hard to take on the role of caretaker that a whole team managed at the hospital, and do it on our own. We had weekly well visits and weight checks and follow up with various specialists and evaluations with early intervention. I think we had 15 different appointments in the first 4 weeks we were back. Meanwhile, we were averaging probably 2 hours of sleep a night total. It was really hard, but we also choose to see the joy and appreciate that not everyone gets to bring home their kiddos from the NICU, and we did, and we are eternally grateful for that. My husband is quick to start sleep talking or do nonsensical things when he is in that in-between sleep and awake state or when he is woken up, so we have some funny stories from our 2AM baby adventures – some of the funniest times were when he would scoop up an oxygen tank off the bed, instead of the baby and start patting it over his shoulder and bouncing. Over the past months and years since being home we have had the pleasure of watching these amazing boys grow and develop into the hilarious and sweet toddlers that they are. They are feisty, and opinionated, and loud, they are the sweetest one minute and tantruming the next, and I’m here for all of it. It’s definitely not easy and being overwhelmed is just a regular part of my life, but a day does not go by that I don’t appreciate and admire how far they have come.
As if our life wasn’t busy enough we were blessed (and surprised) to find out that we would be expecting another boy and he arrived just 17 very short months after the twins were born. That pregnancy could not have been more uneventful and Owen stayed put until my scheduled c-section at 39 weeks. He was born and less than 48 hours later we were walking out of the hospital doors with him to go home. It was a very, very different experience. Although I am so thankful to have my twins and so thankful to have been blessed with a second and uneventful pregnancy, this first year with all three has been a really hard year. For the first few months after Owen was born, I was both overwhelmed with joy and gratitude for how infinitely better our experience with Owen was compared to being in the NICU with the boys, and also devastated because I didn’t really know what I had missed, and I realized that I had missed some of the sweetest, most amazing moments with the twins because they were born prematurely. I bonded very quickly with Owen and that made me realize that it took me months after getting home from the NICU to feel that same bond toward the twins. It was also just really hard to manage three kids under 18 months! We are soo busy. Beyond busy. And I have had many breakdowns to my husband, Dylan saying “I just don’t think I can do this! It’s just too much and it just doesn’t feel like it will ever get easier” but fortunately it already has and despite the hard moments and tiring days, we love it and we love our boys more than words can express. I hope that the hardest part is behind us, but the impacts of the twins’ prematurity on their life is not behind us quite yet. Both boys have been readmitted to the hospital for respiratory viruses, they both receive weekly therapies and still have some catching up to do developmentally, but we are so proud to be their parents.
While I wouldn’t choose to go through NICU again and wouldn’t wish that experience on anyone, I am also grateful for what we have learned about our kiddos and life in general. I am grateful for the strength Dylan and I have gained as individuals, as parents, and in our marriage, and I am also grateful for the way my life trajectory has changed and for my growing passion to help other NICU families. Families in the NICU are experiencing a weight of pain, fear, and grief that is hard to even fathom. It is lonely and heartbreaking even on the good days. While we may never be able to take away that pain completely, I wholeheartedly believe that supporting parents and connecting them with other NICU families both during and after their NICU stay will not only lighten the burden of the NICU but also have lasting impacts on the family in the weeks, months, and years to come.
Two Year Update
Two years ago, on Nov 15, we changed the boys into their matching going-home outfits, loaded them BOTH in their car seats, rode down the glass elevator, loaded them in the car and drove HOME. We had watched so many other families walk past our room for the last time, but it felt like that day would never come. And when it finally did, the feeling was so much sweeter than I had dreamed it would be. This past July we celebrated 2 years with our sweet boys. On their birthday each year, Dylan and I look back at their pictures from when they were born and are in awe, reminded of how far our boys have come and how incredibly resilient they are. While we are so thankful and so proud and enjoy celebrating them being one year older, their birthday brings memories of a very scary, hard, and traumatic time in our life. But discharge day, Nov 15th, was a day that brought some of the greatest joy we have every felt, so this day will always have a special place in our heart.
Since being home, I have enjoyed getting to share pictures and videos of our sweet boys showing how much they have grown and bits of their goofy personalities, sweet nature, and contagious laughter. In reflecting on two years being home from the NICU, I thought it would be fitting to give a more in-depth update about how the boys are doing, and what life is like after such a long and scary stay in the NICU. Although many people may know family, friends, or acquaintances who have had a NICU stay, it’s hard to truly imagine what that experience is like, and understand that discharge day, though signifying the end to a really intense, scary, and difficult chapter, was for us, and for many other NICU families, just the beginning of a much longer journey of navigating the impact of their prematurity on their lives. Two years later we are still very much in the midst of that challenging journey. The pictures that I share or post on social media capture the very real, and very regular joy, humor, and excitement that the boys bless us with on a daily basis, but as all parents can relate, the snapshot does not show the whole story. I hope that by sharing a bit of our experience, I can shed a bit of light on the lasting impact that the boys’ prematurity and our NICU stay had, and continues to have on our everyday life.
Unlike other reasons for a NICU stay where children leave with a diagnosis, we left only with the label of prematurity. We were told that they were at risk for a long list of developmental delays, future diagnoses, intellectual disabilities, behavioral disorders, etc., but that they could also catch up quickly and continue to develop typically with no discernable difference between them and their peers. Within a month of coming home, our boys were set up with Early Intervention for in-home therapy to help them close the gap between their actual age and their gestational (adjusted) age. Since then, for two years, they have had weekly therapy with some of the most incredible therapists (and human beings) we have ever met. As first-time parents, it was hard to tell if there was a difference between our boys and their peers during our first-year home, especially compared to kiddos the same (adjusted) age, since they seemed to be hitting their motor milestones within a normal range. Around 15 months (1 year adjusted) we were expecting language to start to develop, but we noticed that it wasn’t coming quite as easily as it seemed to come to their peers. We had a speech therapist join our team of therapists to help support them.
While we have seen steady progress over the past year, the boys are still significantly behind their peers with their spoken language with Mason rocking about 1-2 words and Ryan up to about 8-10 words. We have heard countless stories of other preemies and even other typical kiddos who had a language delay and by kindergarten you would never have known! We are hopeful that our boys will also catch up to their peers in the coming years, but as everyone knows, the uncertainty of the future can at times be daunting and overwhelming. While the stories we hear from of the incredible progress that other preemies have had or the encouraging words from loved ones, that “they will be ok!” are filled with hope and positivity – these outcomes aren’t guaranteed. Many preemie parents, years and even decades later are still facing daily challenges of the long term consequences of prematurity. I think that as parents we don’t need to just believe that it is going to be “okay” we need to redefine what it means to be “okay”. Is developmental delay okay? Is a learning disability okay? Is cerebral palsy okay? Is a behavioral disorder okay? Are glasses okay? Are poor grades okay? Are regular classes instead of AP classes okay? Is JV instead of varsity okay? Yes. Because their worth is not a product of what they do, but who they are. We love the three of them with all our hearts, and we will love them whether they are at the top of their class or the bottom, star athlete or non-athlete, ahead of their peers or behind. We believe that whole heartedly. Loving them is easy, but giving up the expectations we had about parenthood is really hard. No one wants their kiddo to have a delay or a disability. No one wants to see their kiddo struggle when kids around them aren’t. And no one wants their kiddo to be treated differently or loved less by others because of their story.
Having Owen join our family has been both a complete joy and a very eye-opening experience. As Owen grows and hits his various milestones, Dylan and I have realized how hard we and the twins have worked for so many of their milestones thus far. I helped the twins practice rolling for months, followed Mason around helping him to crawl after Ryan for hours each day, and worked so hard to strengthen Mason’s legs to help him to stand. Comparatively, with Owen it feels like we blink and Owen has mastered another milestone with little or no help from us. At three months, all of a sudden he learned to roll and has slept on his belly every day since. It has been very similar with sitting, crawling, and pulling to stand. He never stops babbling and is eagerly trying to do everything his brothers do. He is a sweet, goofy, LOUD, and adventurous kiddo. We could not be prouder of all three of our boys! The twins, though they are behind their same-age peers, have overcome more in their lives than most adults, and for that we are constantly in awe of their perseverance and resilience. It has just been an interesting and, at times, tough experience to realize how much harder they have had to work to reach their milestones than many of their peers. Sometimes we just wish that they could catch a break! We are hopeful that one day the chapters of their lives that revolve around and are so deeply impacted by their prematurity will be just a memory, but we just aren’t there yet.
Between weekly therapy appointments, feeling sad seeing them frustrated in not being able to communicate their big toddler opinions to us, the moments of panic at the start of every cold wondering if it will truly be just a sniffle or if we will be readmitted to the hospital again, and just the ongoing uncertainty of long-term impacts, we live in constant reminder of the rough start that the boys had. These past two years of CONSTANTLY having to weigh the risks of staying completely isolated versus the boys potentially getting sick and being hospitalized has been exhausting, stressful, and overwhelming. But we also live with a deep feeling of gratitude for the opportunity to raise such incredible boys. It may seem like the hard part is over, pictures of the tubes and wires are long gone, but the hard isn’t gone, it just looks different. We still have sad days, days where we wish the start to their life wasn’t so hard, days where we wonder what life would look like if they had been born 12 weeks, or even just 1 week later! But then we remember how blessed we are to have our boys. The NICU was challenging, and devastating, and traumatic, but we got to bring our boys home with us. At Children’s we were surrounded by families whose kiddos would likely never get to go home from the NICU. We heard from right outside our room, the heart-wrenching moment when a mom realized that her daughter had passed away. Our NICU journey was hard, but not a day goes by that we don’t realize that it could have been unimaginably worse.
The NICU drastically changed our lives. In some really hard ways, and in some incredible ways. Dylan and I consider ourselves to be pretty bad*ss parents and going through that experience has put lot of things into perspective. After having Mason code while I was holding him, or having a nurse bag Ryan 10 times in one shift to get him to keep breathing, many things that used to raise our blood pressure just don’t anymore! I have also gained a growing passion to support NICU families and gotten involved in several different organizations in various ways such as leading weekly zoom meetings to develop resources for parents, presenting at a conference to share our NICU story, participating in various events to raise money for NICU families, and connecting in groups and one-on-one with fellow NICU mamas. While I wouldn’t choose to go through the NICU again and wouldn’t wish that experience on anyone, I am also grateful for what we have learned about our kiddos and life in general. There are still really hard days filled with tears and discouragement, but there is an abundance of hope, joy, and gratitude as well. I am grateful for the strength Dylan and I have gained as individuals, as parents, and in our marriage, and I am also grateful for the way my life trajectory has changed toward supporting other NICU families. We are thrilled to be celebrating 2 years at home with Ryan and Mason and almost 12 sweet months as a family of five.