As told by her mother, Missy
We always talked about having 3 children and this was our 3rd and final baby. Our first two pregnancies had a few bumps in the road, but nothing like what we would experience this time around. It all seemed to be going very well. We made it to 20 weeks and we were hoping that the ultrasound results would come back with no issues and it did. Fast forward to 3 weeks and 3 days later and that is where our journey begins.
I was woken up on January 14th around 11:30 pm to contractions. I sat up in bed for a while and then I timed them. They were about 4 minutes apart. I called my OB and he said it could just be Braxton Hicks, and I should drink a 40 oz glass of water and walk around for about 30 minutes to see if they would go away. This seemed to work. Well, then I sat back down and the contractions continued. I told my husband, Bubba, that something wasn’t right and I was going to the hospital. He stayed home with our older 2 children who were obviously still tucked into bed. I set off on the 20 minute ride to Delnor Hospital with a variety of emotions, and hoping somehow I was just overreacting, but deep down knowing something was not right. When I got to the hospital it seemed like a long wait for them to get me in a room, but it was really only about 10 minutes. As the nurse wheeled me into a room and told me to undress and put a gown on I asked her if I could use the restroom first because I just drank a LOT of water. She said yes, but do not push when you go (I thought that was a strange thing to say, but I understood why she said it). That’s when I realized I was bleeding and went into full panic mode. The OB got to the hospital shortly after that and checked my cervix, it was dilated to 1 cm already. So, he said I would need to be transferred by ambulance to Central DuPage Hospital where they have a level III NICU. I called Bubba to let him know what was going on, then I called my mom to ask her to go stay with our older 2 children. Bubba rushed to CDH and waited a while for me to get there by ambulance. I was put in a room and they did an ultrasound right away. Unfortunately, since it was still very early in the morning I did not see a doctor for a few hours, but once I did we didn’t receive very good news. It appeared that the placenta was detaching from my uterine wall which caused the bleeding, and possibly put me into pre-term labor. There was a very low probability that the baby would survive if she was born at 23 weeks, 5 days. They were going to give me steroids and magnesium to help slow the contractions and help the baby’s brain and lung development. They told us every day counts and we would need to keep her in as long as possible. The contractions continued, the bleeding seemed to slow down a little, and I was put on a liquid diet and bedrest. The next 4 days were very uncomfortable, sleepless days just worrying about what was next for our baby. On the morning of January 18th, 2023 we were at 24 weeks 0 days, and the OB checked my cervix – it was dilated to 6 cm. She said at this point the baby was so small that she could potentially fall out and I wouldn’t know. So, she said it was time for the baby to come. I asked for an epidural, which did not end up working, then the calvary was called in. There were so many nurses, doctors, and support staff in that room, and they came quickly. A few of them warned us that the baby may not make any noise when she came out because she is so small. Three pushes later, there she was, and little Carlee Rose let out the tiniest little cry. Which made us so happy! I was able to touch her while they pumped the cord blood into her for about 30 seconds. Then, she was whisked away to get a breathing tube and all the machines hooked up to her. She was 1 lb, 7 oz, and 12 in long.
From the beginning we were told by almost everyone that she was a little fighter. They said the first few days can seem like a ‘honeymoon phase’ because she will be strong and seem to be doing really well. Then, her little body will figure out that life on the outside just might not be that easy. We were warned about all the potential risks she might face early on since she was so tiny. Brain bleeds, jaundice, breathing issues, regulating her own temperature, digestive issues, infections, eye development… to name a few.
Then, two days after she was born, I was discharged from the hospital. It was a terrible feeling leaving the hospital without our baby, but we knew she was in good hands. We now had to get used to a new routine of going to the NICU every day to visit her, all while trying not to completely disrupt our regular routine with our 2 older children. The plan was for me to go to the NICU every morning after dropping off our oldest at school, and our middle one at preschool or grandma’s house. Bubba would come visit in the afternoon after work, and then I would run and get the kids and bring them home for dinner. The NICU was still under COVID-19 restrictions when Carlee was there, so only parents were allowed in.
Fast forward to Day 7, the day they discovered Carlee had a heart murmur, so they started her on indomethacin. She received the maximum of 3 doses of this medication, then we were told she might need to be transferred to Lurie Children’s Hospital in downtown Chicago for heart surgery if the murmur did not close up. Well, the murmur did not close, so they gave us the option of trying a last-ditch effort of Tylenol before seriously talking about surgery. And by some miracle the Tylenol worked, and her heart murmur closed on its own.
For the first few weeks of her life, she frequently received blue light therapy when her bilirubin was high. She had weekly ultrasounds to check for brain bleeds (which amazingly they never saw any). She had several blood transfusions for various reasons in the first few months of her life as well. She also ended up getting a few rounds of antibiotics early on when her PICC line became infected, so they switched her to an IV. Also, her breathing equipment was frequently switched from a NIPP ventilator to a cpap, and finally to a nasal cannula once she was a little bigger and stronger.
After 26 LONG days I was finally able to hold my baby and get some skin-to-skin time (instead of just sticking our hands through the little openings in her incubator to touch her). It was an amazing feeling, and I didn’t want to stop holding her. It was always hard to leave her each day after visiting, but this day it was especially hard to leave.
There was an eye doctor who checked her eyes every 2 weeks after she was about 2 months old. This went on for several months, and gradually she was able to see the eye doctor less and less as her eyes started to mature. Which I was grateful for because those eye appointments made her very upset.
I had to return to work after about 6 weeks on maternity leave. This was very hard to wrap my head around, as this would mean another change in our daily routine. Also, the feeling of my visiting time being cut down drastically each day was awful. I enjoyed spending most of the day at the NICU, so I could see and talk to almost everyone that interacted with Carlee each day. So, this was again a very big adjustment, and we called the NICU every chance we got to check up on her. Then, I visited for a few hours after work each day, and we spent as much time there on the weekends as we could.
We were finally able to give her a bottle when she was about 3 months old. Prior to that everything was fed to her through the feeding tube. We were so excited to start feeding her with bottles, but we had no idea what a challenge this was going to be for our little fighter. The speech therapists were wonderful and worked with Carlee a few times a day to get her used to eating by mouth. Then, of course the nurses, Bubba, or I would take over bottle feeding if the speech therapist was not available. Eventually we noticed that she would often cough and/ or choke when she was taking her bottle. So, the bottle feedings went down to about twice a day, and they continued with the tube feedings.
Carlee’s due date of May 10th came and went, and she was still working on her bottle feeds. Then, on May 21st they officially removed her breathing tube. That felt like a huge milestone, and we were very hopeful that this would mean we could take her home soon. Fast forward to May 31st… They scheduled a swallow test that revealed she was aspirating (fluid was going into her lungs). So, they drastically reduced her bottle feedings, and we had to be very careful to stop the feeding when she gave us cues that she was uncomfortable.
Then, the nurses began teaching Bubba and me how to insert her nasogastric (NG) tube, because at this point, we knew she would need to go home with a feeding tube. We started by practicing on a doll, then we both had to successfully insert the NG tube, on three separate occasions, into Carlee’s nose to be able to take her home. We both got the hang of it, and we were again hopeful that we would be taking her home soon.
On June 6th we thought we were going home and unexpectedly Carlee came down with a cold and was put in an isolation room. She was isolated for a few days and at this point she had no “alarms” for over a week. Meaning, her vitals were all in normal range, which is something they must take into account prior to discharging her from the hospital.
Then finally the day came! Carlee was discharged on June 12th, 2023. She spent 162 days in the CDH NICU, and she came home weighing 8 lb, 8 oz & was 19.5 in long. We were ecstatic to bring her home and introduce her to all of her family for the first time.
The eye exams, speech therapy (for oral feeding), and physician follow ups continued once we were discharged from the hospital. She would have weekly appointments for the first few months, then the visits would go out to biweekly. I was lucky enough to be able to take another 6 weeks of maternity leave to be home with her. We would eventually show both of Carlee’s grandmothers how to insert her NG tube as well. This way they could take care of her once I had to return to work.
Carlee struggled for months to drink her bottles, so the tube feedings continued. She was also getting bigger, stronger, and smarter too. She would, at times, find her NG tube and pull it out. Putting the tube back in was getting increasingly harder as she would move a lot and get very upset while we were inserting it. So, in September after a NICU clinic follow up appointment, it was decided that she should have a gastrostomy tube (G-tube) placed. On October 6th, 2023 Carlee had her first outpatient surgery where they inserted a G-tube through her abdomen and into her stomach. To say this was a scary day would be an understatement, but as always, Carlee was a trooper, and her surgery went very well. She recovered in just a few days and was back to her normal happy self. The staff all told us we would be so much happier once the NG tube was gone, and the G-tube was placed. And they were right! We no longer had to worry about Carlee pulling her tube out of her nose. We could cover her G-tube up with her shirts now.
Today Carlee still sees speech therapy every week, and we are working on solid foods and sippy cups. We rely heavily on the G-tube to get her the daily nutrients she needs. She has now been cleared by the eye doctor to come for yearly visits. And she sees her Primary Care doctor monthly for weight checks.
In her first-year home she had RSV, COVID-19, strep, and multiple colds, but she never ended up back in the hospital. We consider her very lucky to only have feeding challenges after coming into the world so early. We are confident that one day she will overcome the feeding challenges and get rid of the G-tube. Today she is a very happy 21 month old baby that is walking around, babbling all day long, and is as feisty as ever. Her older sister and brother love playing, singing, and dancing with her. We are grateful everyday for all the amazing care she received while in the NICU and we can’t wait to see what wonderful things she will accomplish next.
