After 3 years of trying to get pregnant, and one heart-breaking miscarriage, my husband and I found out we were expecting! We were so excited! We started a photo album called “The Adventures of Baby Mullenmeister” and documented the baby bump each week. Baby was a traveler – Las Vegas, the North Shore, 2 concerts, San Diego – this baby was already a part of our fun and adventurous family.
The pregnancy was healthy and normal. An ultrasound told us we were having a girl!
We were on vacation “up north” about 4 hours away from home. It was a wonderful, relaxing week. My husband, Steve, and I spent hours in our boat talking about the first time we would take our “daughter” fishing.
I even caught the biggest walleye and won a fishing contest!
I was 23 weeks along – just over half way.
On the last day of vacation, I started feeling some cramps. All of my books said that some cramping was common so I didn’t think too much of it. After a while, it started getting really painful, so I suspected something might be wrong. We packed up and called my nurse as soon as we had cell phone service.
The nurse sent us immediately to the closest ER. When we arrived, they did a test and found that I was leaking amniotic fluid and that I was having contractions and that my water bag was bulging. They started pumping me full of steroids for the baby’s lung development and magnesium to stop or slow my contractions. At this point, I was convinced they would be able to stop the labor. I wasn’t scared.
Until, I saw the look on the doctors face when she told me “You are in the wrong place. This hospital does not have the capacity to care for you or your baby.” They were transferring me to St. Cloud Hospital which had the closest Level III NICU. At first they were going to transfer me in an ambulance, but decided that wasn’t going to be quick enough, so I was airlifted.
Whoa, baby – this was not the kind of adventure we wanted!
I’m scared of heights and I get claustrophobic in small spaces. I was strapped to a board with 6 different restraints. Every time I had a contraction, all I wanted to do was curl up in a ball, but the restraints kept me from moving. The magnesium made me feel like I was on fire and melting from the inside out. The flight was 25 minutes; it felt like 25 years.
This was the worst part: my husband Steve couldn’t ride with me. He watched the helicopter take off. He had to drive 1 ½ hours to St. Cloud by himself. He had no idea what was happening…
I was so scared all alone in a strange hospital. There were no less than 10 people in the room with me all rushing to get ready for the baby. I looked around and said “Who is going to be my friend?” Two nurses were glued to my side from that point on.
I had no idea how to labor – I didn’t get to that part in my book yet – thankfully the nurses helped me breathe through the contractions and told me what was happening.
Steve and my sister, Anna, arrived about 30 minutes before the baby was born. It was such a relief to see familiar faces. It was starting to sink in that I was having a baby NOW. My body was doing one thing, but my brain kept saying “No – it’s too early!!”
And the baby was born. It was not breathing.
Doctors were working frantically, everyone was crying.
And then I heard the most amazing sound ever – a tiny little mew! The baby was alive!
Steve was able to cut the cord. That’s when he noticed that we had a little boy instead of the girl we were expecting! Remember that adventurous baby? He was really keeping us on our toes!
He was rushed off to the NICU before I could hold him, or even see him.
Four hours later, Steve wheeled me to the baby’s incubator. I was speechless – this was not how I pictured my newborn baby. He was covered with wires and tubes. The machines were beeping and alarming.
His skin was translucent – we could see the blood pumping through his veins. His eyes were fused shut. His ears weren’t fully formed.
He was tiny. 1 ½ pounds – smaller than a pack of hamburger you buy at the grocery store.
His feet weren’t much bigger than a quarter.
He literally fit in the palms of our hands.
He was the youngest baby in the nursery ever. They warned us he might not leave. He had only a 4% chance of healthy, normal survival. We watched him struggle to breathe – struggle to survive. So we did the only thing we could do – we loved him. We sang to him, and read him stories, and touched him as much as possible through the tiny portals of the isolette. We did all we could do make sure he knew he was not alone.
The first time we got to hold Jax, he was two weeks old. (I’m not sure if we were allowed to do this because Jax was getting stronger or because the nurses weren’t sure he was going to make it.) This was an extremely big deal – it took 2 nurses and a Respiratory Therapist to make the transfer from isolette to our arms. It took about 30 minutes to get Jax prepared for the big adventure. The nurses untangled all his wires, made sure the ventilator was secure, and checked him for signs of distress.
Then once we got him in our arms, they had to make sure his airway was open and that he was getting enough oxygen. The most important part was making sure his ventilator tube was in the correct position; they would tape it to our arm or the chair to make sure it did not move. We could not move or change position at all when we were holding him – the slightest movement could kink the tube and cause a spell where his heart rate would drop and his oxygen levels would plummet. Spells happened quite a bit at first – trust me, holding your baby while you watch them turn blue is not a very pleasant experience. But. The positive aspects far outweighed the negative.
We were able to bond and connect with our baby. We were able to give him kisses. (Although at first, he was so small, I could not reach his head with my lips!) We were able to feel his tiny body, his wiggles, his breath, his heartbeat. We were able to connect with him in a way that was impossible to do through the plastic walls of his isolette.
We were there every day, all day. Before we left to make the 1 ½ hour drive home each night, we would ask “Is tonight a good night to go home?” They would answer yes, or they would tell us, “maybe it’s best if you stay nearby.” Those nights were the worst – we were waiting for the dreaded phone call in the middle of the night.
And then it happened.
The call came at 2am. Jaxson needed CPR. His potassium levels were 30 times what they should be and his heart wasn’t handling it well. Thankfully, his doctor was able to lower the potassium level and get his heart back on track with medication. But three days later, he was still having trouble with his heart.
He was being transferred to Children’s Hospital in St. Paul where he would have access to a neonatal cardiologist.
The transfer from St Cloud to St Paul was terrifying! We were not allowed to ride along with Jax, so we met him in his new room.
He did not handle the ride well. (We found out later that the ambulance had to pull over on the side of the road so the EMTs could give Jax CRP.)
His new doctors and nurses were rushing to get him stabilized. We watched from the sidelines, helpless and scared.
Fortunately, the doctors at Children’s were able to quickly pinpoint the problem with Jax’s heart and healed him with medication instead of surgery!
But, we felt alone.
It was like we were back at the beginning again! A new environment, new equipment, new doctors, new nurses, new staff, new procedures, new polices. We didn’t know where the bathroom was.
We were desperately searching for someone to take us under their wing and show us the ropes! For someone to introduce us to the new ways of doing things for Jax in a detailed and honest way.
When we solidified our primary nursing team, many of our fears disappeared.
We knew these people were taking care of Jax as a person, and not just as a patient. We started to breathe easier as Jax gained weight and showed signs of being able to get off the ventilator and then the C-PAP breathing machine.
Jax was growing! And he was doing very well. His team of doctors was amazed at his progress! He was even starting to get little fat rolls. And his daddy’s scowl!
After 93 days in the NICU, Jax was able to come home.
He was released an entire month before his due date! This is unheard of for 23 weekers. His pediatrician called him a “superhero.”
Jax has done very well, but he still faces many challenges because of his low birth weight and early delivery. He came home on oxygen, but after only a month and a half, he passed his sleep study and proved that he was ready to come off.
He has aggressive Retinopathy of Prematurity (ROP) in both eyes which required injections and laser surgery. He is monitored closely for signs of potential blindness from retinal detachment.
He had a double inguinal hernia which required surgery. He also has a condition called hypospadias which will require multiple surgeries when he is a year old. However, we are very thankful that he escaped many of the major preemie scares: no brain bleeds, no NEC, no heart surgery.
We have a million doctor appointments, but the main thing we do is love each other!
Jax an hilarious kid! He makes us laugh everyday with his funny faces.
He loves singing and “talking.” He’s so friendly – he has a smile for everyone he meets. You’d never know by his happy personality that he spent 3 months in the hospital fighting for his life!
If you’re interested in reading Jax’s story from the beginning and throughout his NICU stay, check out his Care Page atwww.carepages.com/jaxmully.