Our sweet miracle baby boy was born at 24 weeks gestation. To say that day was terrifying… is an understatement. We don’t know why he came so early – but he did. Our sweet love, Owen, was born on April 8th 2020, at 12:21pm weighing 755g (1b 10oz) and here is his story.
On April 5th, 2020, I started to feel some discomfort in my lower back. Being only 23 weeks 4 days along, I didn’t think much of it – it was just typical pregnancy pain, right? Later that day Ethan was rushing me to the nearest hospital as I was in spontaneous pre-term labor. What caused me to go to the hospital has brought me a lot of trauma and because of this I won’t speak on that moment…but what I will say is – just trust your gut.
After 3 long, terrifying days in the royal Alexandra hospital & one ambulance ride – Owen was born. He came out crying & was laid on my chest for 2 minutes before he was swept away by the NICU team. That night I witnessed Ethan hold our tiny micro-preemie for the first time. This moment was full of so many tears as Ethan and I were told that he would no longer be able to visit Owen due to COVID-19 restricting NICU babies to only one designated visitor. The pain we felt in that moment was unbearable & the tears streamed our faces as Ethan cuddled Owen’s tiny fragile body for the very first, and possibly last time.
Owen was too small to be born. He was hooked up to every machine imaginable & pumped so many different medications to try and keep his tiny body alive. We didn’t completely understand all the terminology of everything that was happening to Owen at that time, and I am thankful we did not. Looking back and understanding what he went through makes me want to curl up in a ball and cry. There is no way I would have had the immense strength that I had in those moments, to be beside him, holding him, if I knew the true severity of it all.
Owens first week was just fine. This is called the “honeymoon” phase. Micro-preemies come into the world and think hey, this is great – until it is not great. That next week is where everything began to crash and burn. Owen had multiple lung collapses, so much so that he required two chest tubes due to pnuemothorax’s. He had so many X-rays taken in those few weeks that I had to stop counting. His blood pressure would tank & we would hold our breath as we saw his mean BP sit at (17), (16), (15). The BP medications saved him – and thankfully he responded well to every med that he was given. His oxygen requirements would skyrocket so high(100%) that the machine could not even offer him any more – making us hold our breath once again as we PLEADED with Owen to breath more on his own & to keep his breathing saturations above 90%.
Then came the day. The day that I never want to talk about. The day that the neonatologist looked at me after rounds and said “I am very worried for your Owen, you should ask Ethan to come be beside you today”. This was the worst day of our entire lives. I can’t explain the feeling of mourning a child that is not even gone yet & I hope you and your family never have to experience it.
Even though that day was wretched & we allowed ourselves to feel all the mourning emotions – I knew deep down that I was going to be bringing this baby boy home.
We spent the next hours praying and praying alongside our tribe of family & friends, for just one more hour, minute, second, with Owen. We sat beside Owen and held his little hands while singing, talking and comforting him. At this time he was too sick to be held & too hooked up to tubes, lines and monitors to be moved. Within 4 excruciating hours, his oxygen sats began to get better. His CO2 which was sitting at 150, went down to 50. The doctors didn’t understand. Based on his numbers, they believed that Owen would not make it through that day, but yet he was improving. All they could say to us was “something happened and we aren’t sure what, but something happened”.
Ethan and I are very religious people, who put a lot of Faith in our Heavenly Father & believe whole heartedly in the power of prayer. Ethan and I know exactly what happened that day – a miracle from God.
The next days were slow. Each day Owen fought a little harder, but got a little bit stronger. He avoided numerous infections, but had numerous blood cultures taken to check for them. He eventually ripped his one chest tube out to let us know he was done with it & sure enough, both were removed. The doctors began the “dart protocol” which is a 10 day steroid treatment of dexamethasone to help Owens lungs open up enough to possibly remove the vent in his throat. Within 3 days, his fio2 went from 85% to 35% and eventually… the SPLENDID 21% (room air). So the wonderful docs, RTS and nurses peacefully removed that awful tube & we finally heard our baby boy cry. After 4 weeks, we FINALLY heard his heart breaking, adorable, voice again.
The next few days we were all on edge as we waited to see how Owen would react to the vent being removed and only having a nasal cannula to receive oxygen. But as the days went by, he got stronger & that pesky vent was NEVER put back in – which is a huge miracle in itself. It was after this extubation of the vent that we started to see a huge improvement in Owen.
We still fought through infection scares (a NEC scare which almost put me on my death bed I was so terrified), laser eye surgery for stage 3 ROP, a PDA in his heart which was treated for one week with Tylenol to close it, mild pulmonary stenosis, pulmonary hypertension, two VCUG’s, had a scare of biliary atresia with too high of bilirubin levels, fought through two UTI’s, we watched him desat and bradycardia too low numerous amounts of times, he needed to be bagged for oxygen once, had over 6 blood transfusions, multiple IV’s and catheters placed, he was on the highest jet ventilation with nitric oxide, on the oscillator vent, went blue a few times, BUT he got through it all like a champ. Through all of that, Owens brain scans were always clear with no brain bleeds.
After 56 days, Ethan and I were finally able to visit Owen together and the visits slowly got easier and easier. We were finally a family again. Ethan and I would fight over who got to snuggle Owen & would see who could speed walk quicker into the NICU to pick him up first. We would give him sponge baths in his incubator, change his diaper, take his temp, read to him, play music for him & put clothes on him – we finally felt like parents. The NICU was becoming our normal and spending 8+ hours there a day was just our typical day.
Two minutes after I gave birth to Owen a lactation consultant asked me if I would like to breast feed Owen. This question made me feel all the emotions because there was so much unknown. I had just given birth to a 1lb 10oz baby, who had a lot of stats against him, yet I needed to decide right then and there if I wanted to breast feed him, in 12+ weeks.
Of course I said yes & with extreme luck my supply came in fast & full. Owen never needed any donor milk and was given my milk right away. It was a true labor of love as every 3 hours I pumped either beside his incubator, or late at night at home with no baby beside me… but the deep freeze full of milk + my ability to breast feed Owen at home now, makes it all worth it.
About 6 weeks into our journey I got mastitis & ended up in the ER on IV for antibiotics & a screening for sepsis. I have never been so sick in my life & missed two days of visiting Owen but as soon as I felt better and my fever broke (2:00am in the morning), I jumped in my car and drove the 30 minutes to the hospital to hold my boy.
Owen was doing so lovely on the NIMV (a type of nasal cannula for oxygen) that he was put on after being extubated. He was actually doing SO well that they were able to make the swap to CPAP at the lowest setting! THIS was huge because THIS is when our primary neonatologist said the words “I don’t think Owen will require oxygen when he goes home”. First off, she said the words “go home” and second off, NO OXYGEN? WHAT? Here is my baby boy who suffered from numerous lung collapses, pneumothorax’s, has chronic lung disease, BPD & had pulmonary hypertension and you are telling me that he won’t require any oxygen when he goes home?
Well… 1 week on CPAP went by and in that time Owen moved from his incubator to an open cot. He moved from level three care to level two care. He made it into a crib because he could regulate his own temperature. He started bottle feeding & breast feeding and THEY REMOVED HIS CPAP. HE WAS BREATHING ON HIS OWN and we finally were able to see his full adorable face! Ethan and I held our breath as the days went by to see if Owen would require oxygen help again but our little fighter pushed through it & remained oxygen free from 35 weeks gestation onward (this is such a huge miracle).
At 83 days, Owen and I moved up to what is called “five west” at the royal Alexandra hospital. I was finally able to sleep beside Owen & take care of him 24/7 to prepare us for HOME. While we were up there, Owen had one final brain scan done which showed a small cyst in his right periventricular region of his brain. Though this news is terrifying, we are not letting this diagnosis change how proud we are of Owen for overcoming everything that he did, in the short amount of time that he did. This diagnosis is unknown & the best we can do is offer him physical therapy to help his brain rewire where the damage has been done. Owen is a true fighter & we know for a fact that this will not hold him back – as nothing in his life has yet.
Some of our hardest days in the NICU were everyday leading up to him being extubated & watching him desaturate & bradycardia with the need for raised fio2 & blood pressure medications. The days where he had 10+ pumps set up to push meds into his tiny body. The day he got his PICC line. The numerous terrifying sit down chats we had with his doctor in regards to whether we wanted a DNR or not, the few days after his 2 month immunizations (they made him brad + desat like crazy), when he had his UTI’s, the VCUG procedures, the day he needed emergency placement of chest tubes & his laser eye surgery day.
Some of our best days in the NICU were the days where K-Care made Owens oxygen saturations go up & his FIo2 requirements go down. The day he was extubated and we got to pick him up without the help of any nurses & RTs. Watching Owen suck on his OIT (oral immune therapy – my milk). The first day he wore clothes. His first bath. The days where they switched his mask & we saw his beautiful face. The day he made it to CPAP. The day we moved to level 2. The day his feeding tube came out. The day his surgeon told us he did not require any surgery on his hernia. The day we walked out of the hospital.
After 94 hard and hopeful days, our little man officially made his big debut home at 37 weeks 3 days gestation, without oxygen or a feeding tube and miraculously avoided any huge surgeries (laser eye was the most minimally invasive, quickest and easiest surgery).
Since the day we were discharged we have enjoyed nothing but absolute bliss with having our miracle boy at home. He still requires some medications (iron, vitamin D & Caffeine) and he does have some pretty bad reflux which makes feeding quite a time commitment, but other than that – it feels like we were never even in the NICU. Our little Owen is such a fighter and life at home with him is magical. Because of COVID-19 none of Owen’s grandmas, grandpas, cousins or aunts and uncles were able to meet him until he left the hospital. To say that Owen meeting his family members was emotional, is an understatement. They spent 94 days crying, praying and face timing Owen in hopes for the day that they could officially meet him too.
We have a lot of follow up appointments to go to & we now have a severely immune compromised baby amidst a pandemic, but Owen is our little champ who won’t let anything get in his way. From here Owen will develop according to his adjusted age (so even though he is almost 4 months, he is really only 4 days old adjusted). He will be followed by the optho for his eyes, a cardiologist for his heart, an audiologist to make sure his hearing is okay, a neonatologist for his development, a dietician for his weight gain, a physical therapist to help develop his motor movements properly & at home nurses from the Royal Alex. Owen is luckily able to receive a RSV immunization due to his chronic lung disease, but for the first 5 years of life we will need to be extremely cautious with Owen especially during flu season. Premature babies are much more likely to get extremely sick from just the common cold.
After our 94 days in the hospital, we are so thankful for modern medicine and the team at the Royal Alexandra Hospital in Edmonton, Alberta & for everything they did for our sweet miracle baby boy. We feel forever indebted to them for saving our little boys life and for taking such great care of Ethan and I.
Entering into the micro-preemie mom club is not a club I wished to be a part of, but it is a club full of absolutely STRONG women who have been through more than anyone could ever imagine. One of those incredibly strong women, is me. I am so incredibly strong. I witnessed things in the NICU that nobody should ever have to witness (both of Owen and of the babies around Owen). The days in the NICU were incredibly hard and painful yet I still showed up every single day & I stayed positive for Owen because I AM STRONG. I used to be afraid of hospitals, needles and medical emergencies but now it is a huge part of my life & I am so extremely thankful for hospitals, emergency docs + nurses + modern medicine. Those things literally saved my babies life & were what brought him into this world safely/ are what keep him healthy today.
IF you are new to the micro-preemie club, find yourself some other micro-preemie moms to talk to or please reach out to me at @kenswebster on instagram. I chose to share Owens story publicly to offer hope for other micro-preemie mothers because the NICU is hard & terrifying & when you are in the thick of it, you absolutely need support.
Micro-preemies are wonderful, strong and amazing humans. Owen has proven to us over and over again that he is the strongest little warrior and that nothing will get in his way. While you are in the NICU, believe in your baby. Talk to your baby & kangaroo care with your baby AS MUCH and OFTEN as you can. We would spend 8+ hours holding Owen each day and I truly believe that is why he is home with us today.
And to those of you who followed closely along on our journey & who prayed, supported and sent well wishes to us. Thank you. We would not have had the high spirits that we had without you.
Sincerely, one tough as heck micro preemie mama.
