It was a time filled with the highest joy and the deepest sorrow for our family. I am in tears as I figure out the words to tell you about our twin sons – Luke and Asa. What follows is our experience in the first 12-15 months after their birth.
We (Aaron and Michelle) had spent about two years trying to have a baby, so you can imagine our delight when we learned we were having twins. We had tried so hard to get to this place and were excited we were going to get our two kids in one try.
The first trimester was rough, but we finally got to the second trimester and announced we were pregnant. At week 20, on Christmas Eve, we took both grandmothers to the ultrasound, so they could see the babies. The babies were doing well, but the doctors realized I wasn’t. My cervix was shortening, and I was told I had to be admitted to the hospital.
At first we thought it would just be a couple of days of monitoring and medicine, but we soon realized I wasn’t going home and that we needed to pray.
We would stay there for many weeks. In the end, things didn’t get better, but I was able to hang on to exactly 24 weeks, also known as the threshold of delivering viability.
On the morning of January 18, 2010, we welcomed our sons Asa Aaron Wynn at 7:56 a.m. and Luke Aaron Wynn at 7:57 a.m. After delivery, we were thrilled that they each made their own attempt to cry. The neonatologists stabilized the boys and then they were rushed off to the NICU.
We knew things were serious back then, but always thought – this happens to other people, not us. It is going to be a long road, but we will make it. It took only 16 days for the reality of Luke and Asa’s early birth to really sink in. On February 3, just two days after Patent Ductus Arteriosus (PDA) surgery to correct a heart defect, our son Asa went to heaven.
He had developed a blood infection and was too weak to fight it off. It was a tough year. We’re still filled with sorrow, but also with joy. On the day of the boys’ birthday, we were discussing how we are not full of sadness, but rather only half full on joy. We can only imagine the feelings we would have if it weren’t for our precious Luke, and the smile he brings to our face each time we see him.
So now, here’s a little about our Miracle Luke and our Angel Asa. Life in the NICU is by days – so that is how we are going to tell this story.
When the boys were 3 days old, they were baptized. On day 7, we each changed their diapers.
And as Aaron said – “We didn’t break them!”
Asa also held daddy’s wedding ring around his wrist and Luke around his ankle when they were only 7 days old. These are photos we will cherish forever. Mommy got to hold Luke when he was 10 days old.
He was so tiny on her chest. The babies opened their eyes when they were about 11 days old. Aaron held Asa when he was 12 days old. A memory he will never forget. Of course, on day 16, our world stopped when we lost Asa.
On day 23, Luke started getting sick. It was amazing to us to see what a urinary tract infection can do to a premature baby.
Luke was placed on the oscillator that day. When Luke was about 28 days old he gave us the biggest scare – his potassium levels got so high the doctor thought it could kill him within the hour if she didn’t get it down.
We were lucky Dr. Troyer was able to bring the levels down. In the days that followed, as mom got sicker due to a C-section complication and was readmitted to the hospital, Luke got better.
Although it was a slow and stressful climb, it was generally uphill from there.
On day 57, Luke was moved to a “big boy crib” and out of the isolette. When Luke was about 60 days old, we had a “care conference” with the doctors, respiratory therapist, OT, PT, social worker, parent supporter and others to discuss Luke’s care.
This meeting lasted over an hour and we were inundated with medical jargon and long-term expectations for Luke. But, at the end of the day we remember one thing from that meeting. The doctor said, “When you take him home…”
She said yes, “when not if.”
We both broke down in tears as we told her no one had ever said we would definitely take him home.
You just can’t imagine the feeling this gave us if you have never been through it.
On day 68, he had laser eye surgery for ROP. On day 69, he was removed from the ventilator after spending the first ten weeks of his life on it.
Next, he was placed on CPAP. It was a long road getting there and luckily he didn’t have to go back. On Easter Sunday – day 76, and only one week later – the doc called us and told us Luke was coming off CPAP and going to the nasal cannula. It was a wonderful gift to us that day. From that point forward, we got to pick Luke up out of his crib without assistance from a nurse.
That opportunity was nearly three months in the making. On day 83, we gave Luke his first bath. This was more traumatizing on us than him. The other milestone on this day was our ability to see Luke’s entire face (if only briefly) without obstruction from a tube, tape, or wire. Amazing to think you had to wait this long just to see your baby’s face.
On day 106 – just a few days before Mother’s Day, Luke took his first bottle.
From that day on, the end of the hospital stay was in sight. On day 113 – just one day after the boy’s due date – Luke was moved to the seventh floor NICU, the step down unit. That was another milestone – for those of us who spent months on the second floor, we knew what the seventh floor meant. We too would actually get to go home one day.
On day 130, Luke scared us a little and the doctors were concerned he had an infection. However, on this same day, we got his go home window – June 9-12.
That was just about 2 weeks away! Wow! A few tests and a couple of days later we found out Luke wasn’t sick and that his reaction was due to the vaccinations he had received.
On day 133, Luke’s feeding tube was removed. On day 137, we “nested,” or took care of Luke ourselves in the hospital for the night. On day 141, Luke smiled for the first time, non-gas related. On day 142 (five months after delivery), we got our walking papers and Luke got to see the outside world for the first time. We took him home and soaked up every minute with our new family. Luke still had respiratory needs, so he went home on oxygen. The poor guy only had a 14 foot leash. He wasn’t very mobile being on a monitor and oxygen, but we made do.
He had to have hernia surgery about 2 months after he came home and it went well. The months that followed came with many more firsts and we documented each one – first ride in the stroller (6/10), first time sleeping through the night (August), first hay ride and trip to Burt’s Farm (9/1), first nap in crib (9/2), first solids (9/11), first Walk to Remember for Asa (10/10), first hives (10/26), first tooth (10/27), first time rolling over (10/30), first time sitting (11/7), first cold (11/16), off oxygen during the daytime “officially” (11/20), first road trip – Tennessee (11/30), first word – “good” (December), first picture with Santa (12/4), second words – Dada and Daddeeeee (12/25), first white Christmas (12/25), first time playing in the snow (12/26), first sippy cup attempt (12/29), first time sledding – in a Styrofoam cooler (1/10), first time pushing his toy truck (1/12), first time sitting on his knees (1/12), first birthday cake and party (1/16), and first birthday (1/18).
A year later, I watched in awe as our Miracle Luke took a nap on the couch. He is a wonderful baby and is happy almost all the time. He has come a long way, and so far. We are lucky in the impact that his prematurity has had on him. He has some oral aversion issues and hates the bottle.
Luckily, he loves the solids and is starting to get interested in the sippy cup, so we’re just waiting this period out. He has some developmental delays – all primarily related to reflux and not wanting to be on his stomach. He is getting stronger though. Just this week he learned to sit on his knees and is getting up on all fours. It won’t be long before he is crawling.
He has made it to the growth chart for a 12 month old for head and weight – hopefully height will catch up soon. Luke still had some apnea detected during his sleep study in November, so he had to stay on oxygen at night.
He had another sleep study in January and we were thrilled that the apnea had improved and he was able to come off the oxygen.
It is so nice to no longer have tubes and wires hooked to him. We have big plans for the days, weeks, and months to come, but for now we just enjoy each day we have with our Miracle Luke.
We miss our Angel Asa every day, but know he is looking down on us from heaven. Finally, we want to take a moment to thank those at Northside who helped us get where we are today – the doctors, nurses, respiratory therapists, physical therapists, occupational therapists, chaplains, and case managers.
You may never know it – but you will always be a part of our lives.
Specifically – thank you to Dr. Troyer, who held our hand the night Asa died, saved Luke’s life the night his potassium levels were so high and cared for him during his critically ill UTI period.
You will never know the impact knowing you had on our lives. And to all the nurses who cared for our boys during our 100+ days in the NICU – you all have a special place in our hearts.
You “loved” on our babies 24 hours a day when we couldn’t be there. You held them when they cried, fed them, changed their diapers and kept them alive till the next time we got to see them.
Lastly, we thank God for getting us through this. We still have a lot of questions, but our faith has kept us going through it. We know God has a plan for this suffering in our lives, and we hope someday to know why. At the end of the day though, we can thank God for letting Luke stay here with us. He is truly our joy.
Today, Luke is a happy, healthy, witty, funny, kindergartner that loves to play soccer, build Legos, and tell knock-knock jokes. We no longer fear each day like we did in the NICU, but we still live with reminders of those days — asthma, glasses, occupational and speech therapy. But we wouldn't trade it for the world. Living life with Luke makes missing Asa hurt just a little bit less.