Problem: Extreme prematurity, underdeveloped lungs, brain bleeds, blood clot in aorta, ROP
Solution: ventilator breathing support, 2 surgeries, blood transfusions, Occupational and Physical Therapy, amazing medical team from day 1 and going forward
Outcome: Happy, healthy, thriving, [almost] 2-year-old who recently started daycare
Maria, Terry and Ethan’s NICU story began back in November 2016. The pregnancy was uneventful until the 16-week ultrasound suggested our unborn son wasn’t growing appropriately. An ultrasound a month later showed that he had grown, but still was behind in measurements. Maria’s doctors were concerned she could be developing preeclampsia and recommended we see a high-risk pregnancy specialist at the Mother Baby Center in Minneapolis. She was admitted to the hospital the same day.
Three days later things began going downhill fast. It was determined Maria had preeclampsia and HELLP Syndrome (hemolysis, elevated liver enzymes, low platelet count). Continuing the pregnancy was no longer safe for her nor the baby. On Sunday morning, November 6, an emergency C-section was performed and a couple hours later Terry and Maria welcomed their son into the world at 26 weeks 3 days gestation, weighing only 1 lb 2 oz. They were in a state of complete shock.
Terry was able to meet Ethan briefly while neonatologists were working on him. Thankfully the C-section went without issues and after a couple hours in recovery, Maria and Terry were taken to the NICU to meet their son. This is not how they had envisioned that first meeting... He looked so small and fragile and was surrounded by various cords and all kinds of machines constantly beeping. The only way to connect with him was to softly talk and touch his little hand – hand hugs – as they later learned.
First Hours. First Meetings. Hand Hugs.
One of the first people to meet them in Ethan’s NICU room was his nurse Jill. Jill was one of his primary nurses and would be with Ethan and family for the next 4 months. She and other nurses in those early days were so supportive, encouraging and patient with Maria and Terry, explaining the NICU world and its realities, the world they never knew existed before they got thrown into it. The nurses believed the baby – still unnamed - needed have a strong name as he had a long and tough journey ahead and a strong name would help. Maria and Terry took 3 days to discuss options and finally both agreed that the best name that matched their boy was Ethan Alexander (Ethan means ‘Strong, Long-lived’ and Alexander means ‘Defender of Men’). Those wonderful nurses agreed it was a good match to the feistiness they were observing in Ethan.
Ethan had to get a blood transfusion in the first couple of days of his life and many more followed later. His PDA (Patent Ductus Arteriosus, a vessel connecting the pulmonary artery to the descending aorta) was not closed as often happens in micro-preemies. The doctors were watching it closely and ended up giving him a medicine that helped to close it.
Ethan was a rather sick baby but the medical team had a plan A, B and C if needed. Ethan’s lungs were in poor shape since he came into this world so early. He had several rounds of steroid treatment for his lungs, which seemed to help down the road. He had been, what it felt like, on every possible ventilator support system and made friends with pretty much every member of the Respiratory Therapist (RT) team.
Terry and Maria couldn’t hold their baby boy for 3 weeks, which seemed like eternity. Once he was more stable a couple of nurses would help transfer him from the isolette into their arms and we would cuddle/kangaroo care for hours. Once Ethan even managed to extubate himself while Maria was holding him and they became witnesses to a team of nurses and RTs storming into the room and reintubating him. Not an easy sight for any parent to see…
When Ethan was about 4 weeks old head ultrasound revealed he had an intraventricular hemorrhage, commonly understood to be bleeding on his brain. Consequently, spinal fluid was not draining properly. After consulting with the neurosurgeon, the medical team had to act immediately. Ethan had surgery to put in a temporary reservoir and later another surgery to place a VP shunt.
When he was about 8 weeks old Ethan had routine eye exams to determine if he had ROP (abnormal blood vessel development in the retina of the eye), which is common in preemies. He did develop ROP and was closely watched by the ophthalmologist but thankfully it resolved itself without the use of any medicine or procedures. We were so grateful!
His premature lungs also continued to be an issue. The doctor who was rounding one week had an idea that maybe it was somehow connected with his heart and ordered an echocardiogram, following up with an abdominal ultra sound. When the technician was looking at echo she saw nothing wrong with the heart but... happened to notice a blood clot formed in Ethan’s aorta. This was a significant problem. The medical team came up with an attack plan - giving him small doses of heparin hoping it would help to dissolve the clot. Unfortunately, this didn’t help and the blood clot remained where it was. However, the blessing in disguise was that the clot was not occlusive (blood flowed around it). The doctors kept monitoring it closely. Over the time the blood clot solidified and is still there today but no longer poses a danger to Ethan.
When your child is in NICU and it seems like all the news you are getting is bad news it is hard to keep track of good things. In Ethan’s case he had one strong thing going for him – his eating. He had good appetite and tolerated the feeds and their increase over time. Looking back, it was probably one of the biggest factors in him making it through NICU, of course on top of exceptional care he was getting from his medical team.
More nurses on board
When it became clear Ethan would be in the NICU for quite a while, 4 more nurses stepped up to be Ethan’s primaries, we had 2-day and 3-night primary nurses and many others took care of Ethan when his primaries were not available. They truly became part of the family, giving support, hugs when needed, and simply being present. It meant so much to know their our son was in the best of hands. And often the advice and encouragement they received as parents was almost therapeutic. Maria and Terry learned a lot of new terms and definitions (talk about the medical ‘education’ parents get while at NICU!). Thankfully doctors and nurses were patient and probably answered the same question more than once.
We are so grateful to this day for the care the medical staff provided not only to babies but also to parents! - Maria and Terry
Typical for many preemies, there were days when Ethan would move forward and make good progress and then would go a few steps back. He had numerous apnea spells and once turned blue in front of his parents’ eyes. Couple of times he didn’t come back fast enough and the nurse had to press the staff assist button and a team of specialists would storm into the room, work on him and bring him back. Again, not something you want to witness as a parent…
Ethan’s Nursing Team - Kristen, Shadia, Katie, Monica, Jill and Terry
And our amazing physicians - Dr. Hoekstra, Dr. Landrum, Dr. Voge and Dr. Mrozek
Eventually, Ethan outgrew his apnea spells, got stronger and moved forward in breathing and eating. After 4 months in NICU he was finally transferred to ICC. He was also having occupational and musical therapists visiting regularly and was getting more active. He was learning to drink larger amounts of milk from a bottle. That took time as he needed to learn to breath, suck and swallow. Gradually he got better at that as well and after 173 days in the hospital, Ethan was able to come home! Maria and Terry were super excited but also terrified to were leave behind all the help and support they had for so many months. They were prepped to run his oxygen and other equipment, give him the meds and do everything without the help of nurses. It was a scary transition but they did great. Terry and Maria didn’t feel confident until they had their first week under their belts and everyone survived!
Where is he now? Maria and Terry’s story.
Ethan is almost 2 now. He is super funny, smart, strong willed, his smiles and giggles would light up even the saddest person. He is behind in development but learning that just like in NICU he has his own pace and would get there when it is time. He is surrounded by a great team of OT, PT, speech and a couple other specialists following him. His lungs are significantly stronger, and he was even cleared to start daycare recently. It is good for Ethan to be with other kids as we kept him fairly isolated from other people (and their germs) last winter and he has already picked up some new skills and even new behaviors. His PT calls him ‘tough as nails’ and says that only sky is the limit for him. We have identified it as his life motto!
Maria and Terry shared important lessons they learned in the NICU:
Work together as one team (mom, dad, baby, nurses, doctors, social worker)
It is ok to challenge doctors’ opinions and ask ‘medically uneducated’ questions. Doctors are busy, but they will take time to explain things, discuss plan of action and alternatives and are open to hear non-conventional ideas (after parents do their research of course).
Take time for yourselves. It is hard to miss a day at the hospital but parents need to be recharged and rested.
Accept help and support when it is offered and ask for help and advice when you need it. It is easy to get isolated while in NICU but there are resources available (social worker, friends and family, co-workers, online preemie communities).
There is life after NICU! However, PTSD is also real. Do not be shy to seek support and help. There are plenty of online preemie parent groups and communities and other ways to get help.