We hope you've had a chance to read Part I of this series with Laura! If you have not had a chance, you can get caught up with the link below!
We last left off with Laura delivering her baby at 25 weeks with a bleak outcome and she'll be sharing more of her journey, which includes the NICU. Read on below!
Was there any way you could prepare yourself for the NICU? and did this experience change the relationship with your husband?
"I don’t think so, no. The week leading up to his birth, I knew he’d be born early and stay in the NICU, but it’s a completely foreign place until you experience it. It’s a world we knew nothing about, with a language we didn’t speak.
We were still practically newlyweds and had to learn very early on in our marriage how one another copes with trauma. We were thrust into parenthood, 100 days early and our baby was sick and on life support. I couldn’t peel myself from the side of his isolette, where my husband would feel he needed to go for a run. We had to learn each others way of handling what was in front of us and we did. The NICU nurses talked to us often about the importance of our relationship through all of this. They encouraged us to spend time away from the hospital together. I think they’ve had a front row seat to relationships crumbling under the stress of it all. We had some very dark days but we were there for each other and there for our son through it all."
How long was your stay in the NICU and what are typical preemie issues?
"We were in the NICU for 4 months and the time a premature baby spends catching up to their due date, is characterized as a “roller coaster”. By the end of the first day, I was already tired of the expression but by the end of the first week in the NICU, I understood completely.
We were told about all of the complications our son could face and it made us numb - brain bleeds if he’s overstimulated, meaning we couldn’t touch him because that could cause a blood vessel in his brain to burst. He had brain ultrasounds weekly to monitor any bleeds and although he had none, brain bleeds are very common at birth and after in micropreemies (baby born under 2 pounds).
He had daily chest X-rays to keep a close watch on the lungs for fluid or infection. He was put on a ventilator from birth and every second it’s about finding the right balance on the ventilator settings. If there is too much pressure - his fragile lung tissue is damaged, not enough pressure and his oxygen saturation is too low. Blood gas levels were tested every 12 hours and blood transfusions given when needed. There is an intestinal issue that can develop and is common in preemies called Necrotizing Enterocolitis (NEC). Our son developed this and was quickly treated and healed. This is one of the leading causes of death in premature infants.
Our roller coaster hit all the peaks and valleys- one day his breathing would improve and he tolerated his feedings and the very next day his lung collapsed and he was on 100% life support. He was on morphine and steroids, had blood transfusions, surgeries... more medical intervention than most people have in a lifetime."
How did you cope with those overwhelming fears that seemed to weigh over you during the NICU stay? and any tips for helping parents bond with their baby in the NICU?
"Staying educated was the key. Asking questions. I asked a lot of questions. I always wanted to know the hard truth. It can be very overwhelming, so accepting help when it is offered is also so important. I tend to think I can do it all but what I learned is that you can never be on the receiving end of too much love, support and prayer.
Let your presence be known to your baby. Let them hear you, see you, touch you. As soon as it was safe to hold our son, we did and for as long as they’d let us. I held him for the first time, 9 days after his birth and for only 30 minutes. Sing songs, read books, talk to your baby, bathe him, change diapers, take his temperature. All these things you can do to help make this unnatural situation more normal. Our son was still considered a fetus and we were reading him stories and doing tummy time in his NICU room."
When did you start to see the growth and change in the NICU? Or a moment when you felt like you could start to see the light a bit?
"It wasn’t until we edged closer to his actual due date. He was exactly 100 days early and we knew he’d be in the NICU at least until his due date and even longer if he had serious complications. When he became less dependent on the ventilator for breathing and began to regularly tolerate feedings, he began to gain more weight. All of which are really good signs of strength and growth and although he hit many bumps in the road, the small steps kept us looking forward."
And then walk us through those first weeks being home - what was that like for you and your husband? Are there any moments/memories in particular that stand out?
"He was born in May and we were finally discharged home in September after exactly 4 months in the NICU. We brought him home on 5 medications, fortifier for my breast milk so that he gained weight (he was only 6 pounds when we brought him home) and he was on supplemental oxygen. All of this was so scary. We had the nurses around the clock to help us care for him and administer all medications, respiratory therapists to check his oxygen pressure and most importantly, he was on monitors constantly and although the constant alarms haunted us, they also brought a sense of relief.
Now we were home, no nurses, no respiratory therapists, no doctors, no monitors. We had to remind each other that we’ve got this. We had a 4 month crash course and we were ready for this. We knew our son better than anyone. We were equipped to care for him. What stands out the most about that time was his primary nurse (babies who are in the NICU for an extended period of time are typically assigned a primary nurse who is with him most of the time) telling us, “if you love him, you won’t hurt him.”
We had to be extra diligent because we were discharged at the peak of cold and flu season. We could not have any visitors, especially children, could not take him in public places except our doctor and therapy appointments. His pediatrician would schedule us in the morning before any other patients were scheduled and at the end of the appointment, we’d exit out a side door to avoid walking back through the waiting room. It was that serious. This type of quarantine lasted until his first birthday. Despite the high chance he’d be re-hospitalized due to complications, he wasn’t. Turns out we did a great job keeping him healthy!"
Are there any long term developmental issues or concerns that you had or have to work through?
"What people may not understand about babies born prematurely is that they can take a long time to “catch up” or hit certain developmental milestones. Although every child is different, there seems to be somewhat of a standard for preemie development in the first 3 years. Everything the nurses and doctors prepared us for is exactly what we went through. We had just under 70 appointments in his first year. Occupational and physical therapy started the month he came home from the NICU.
Early intervention is key because you’re looking at a high possibility of cerebral palsy developing or other complications and delays. We have been very fortunate and other than gross motor, fine motor and speech delays all along the way, we haven’t had any long term issues. Regarding his health, he has what they term “chronic lung disease”. This is due to him being on a ventilator for so long and his developing lung tissue scarred. He has had pneumonia more times than I can count, but we are so fortunate this is our only hurdle. I would advise any family to seek out these services, ask your doctor and get plugged into any and all services available for your child."
And the final question we’ve been waiting to ask, tell us how your little guy is thriving today?
"He turned 4 years old in May and is the happiest and smartest little guy. He is in his second year of his special education pre-school program, where they are working on strengthening for gross motor skills, occupational therapy for fine motor skills and speech therapy. He runs and jumps and climbs but is slightly weaker than his peers due to “low tone”, common in preemies. He is on track to start kindergarten next year and we could not be more proud of him. Nothing has come easy for him, but in his own time, everything came.
They weren’t sure if he’d walk, have his sight or even survive when he was born. He survived some very near death experiences in the NICU and is thriving now. He’s had more life experience than most adults and he’s wise beyond his short 4 years. His doctors will tell you he’s a miracle. He is a miracle. These little fighters are truly special and wired so strong. It’s been humbling and such an honor to witness and celebrate every achievement we’d ordinarily take for granted.
If you’re on this roller coaster, whether you’re still pregnant and having complications, in the NICU with a sick child or home now and working through developmental challenges, stay positive and stay informed. Ask questions at every stage and celebrate every milestone no matter when it comes. Although it can be overwhelming to process all the love coming your way, accept help when it is offered. This journey can be extremely isolating, but letting others help you is a way to stay connected when you feel alone or like no one understands what you’re going through.
It was also helpful for me to keep a daily journal with health stats for your baby and just a brief summary of the day along with taking a photo every day. The whole experience can feel like a blur looking back and the details will fade from your memory. You’ll be so happy you have a daily record and pictures to document the journey."
We cannot thank Laura enough for so honestly sharing with us her story, including all those real + raw emotions through that season of life. And we are so happy to hear that little Dempsey is thriving and growing stronger! Be sure to check out Laura's shop below - Lola Jane - where she is donating a portions of her proceeds to "March of Dimes" and "Miracle Babies"