Story by Marissa Mendoza
As first-time parents we were over the moon to be expecting our precious baby girl and as to be expected with first time parents, we had many jitters. Hearing advice from friends and family about what to prepare for could never have prepared us enough. There were suggestions for sizing up “because they grow so fast” for diapers and clothes but this was the exact opposite as to what our first few months would look like and had issues finding things small enough.
We were going through the motions of what seemed like a “normal” pregnancy. See the positive pregnancy test. Check. Find an OBGYN. Check. Schedule appointments. Check. Take prenatal vitamins, change our diet and prepare for morning sickness. Check. Hear the baby’s heartbeat for the first time. Check. See the baby on an ultrasound in hopes of using for a pregnancy announcement. Fail. This little baby did NOT cooperate for photos. Find out the gender. Check. Test for medical concerns. Check. Everything thus far had been relatively “normal”.
It wasn’t until our follow up appointment with the ultrasound tech, where we tried to get better photos when she casually mentioned “you know your amniotic fluid is low, right?” We looked at one another and asked if we should be concerned and were advised that she would have the doctor consult us on this and from there we were told the amniotic fluid was “on the low end of normal” and they would continue to monitor us. That was the first moment we held our breath with our first scare.
Shortly thereafter we were rushed to the ER for some slight bleeding where the doctors then suggested adding in a couple appointments for extra monitoring. A month had passed, and we were back in the ER with more bleeding. It was during this appointment they applied a contraction band to test for contractions. We were confused as we were nowhere near ready to be in labor and deliver our baby. After a couple of hours, we were told everything looked “fine” and were sent home and told to call if this happens again, so we don’t have to go to the ER and in the meantime to just “take it easy”.
A week had passed and that’s when things had taken a turn. Marissa was experiencing extreme pain and screaming out every 5 minutes. She decided to lay down and “take it easy”. She knew she had a doctor’s appointment scheduled the next morning and the goal was to just make it through the night. Shortly thereafter Marissa was hunched over in the bathroom with more bleeding and Patrick was finally able to convince Marissa to go to the hospital. This was 11/15. On their way, Patrick called the doctor who heard Marissa screaming in the background and advised that we go to Edward hospital as it was closer, about 30 minutes away rather than the 45 minutes to where they were planning in delivering. The call ended. Patrick continued speeding and Marissa continued screaming.
Once we arrived, we were quickly admitted and being bombarded by so many staff members that everything seemed like a blur. We quickly find out we’re in pre-term labor and precautions need to be taken since we were only 23 weeks along in the pregnancy. We were briefed with on what would be done for both the safety of the baby and for Marissa but at the time they might as well have been speaking a foreign language as everything was happening so fast, it was a total whirlwind. We knew the goal was to stay pregnant and prolong delivery as long as possible with the target date of hitting 24 weeks as this was crucial for the baby’s odds at survival. IVs were being set up. Magnesium was being administered. Pamphlets were being distributed and we signed our lives away on various consent forms. We had no idea what to expect but knew none of this was mentioned in What to Expect when You’re Expecting. Our trust and faith lied completely on these doctors and nurses, who were complete strangers to us but made us immediately feel that we were in good hands.
Those couple of days in the hospital were so surreal. We didn’t know what to think but knew we needed to make some decisions and make them fast. Do we tell our friends, family and loved ones that we were in the hospital being admitted for pre-term labor, many of which didn’t even know we were expecting? We decided to keep the news to ourselves as there would inevitably be numerous questions asked that we could not answer. What we did know is that we needed a name for our daughter, and it was confirmed then and there that our daughter would be named Dylan Rose.
After 2 days Marissa was to be cut off the magnesium at 11 PM and was informed she had hit the maximum of 48 hours that the drug can be administered. It was early that next morning when Marissa started feeling contractions. These were the first she was able to feel. We had made it to 24 weeks and 1 day. Once the nurse confirmed it was contractions, we were told it’s “go time”. We were rushed to a surgical room for an emergency c-section. Everything seemed to go “as planned” and before we knew it, we had our little girl on 11/18. We didn’t hear her scream or cry out. She didn’t make a sound. The doctors pulled Patrick off to the side so he could see her (what little he could as she was in a plastic bag to keep her warm) and then they briefly brought her to Marissa who was still laying down on the surgical table being sewn back up. She only caught a quick glimpse as she was quickly being carted out and rushed to the NICU, where Patrick met her up there and that’s where our little 1 pound 5-ounce baby spent many days.
Once in the NICU Dylan was on intubated with oxygen and administered a plethora of medications. She immediately received light therapy treatments for her jaundice. She had blood transfusions, was given nitric, caffeine and steroids, all of which were a part of her daily medical cocktails. She had so many wires coming from PICC lines, central lines, and her pulse ox. She was in an incubator, which we called her “condo”. With each test, each procedure, and each day she resided in the NICU she received a bead to be added to her collection, which were referred to as her Beads of Courage. These were physical reminders of Dylan’s journey and told her story.
When Dylan was born and Marissa was discharged, we would spend the day with Dylan. We’d just stare at the monitors and her ventilator. We quickly learned how to read these and how important these numbers were. We heard the alarms sound frequently to a point they didn’t bother us anymore. Dylan’s progress seemed slow as we saw many other babies come and go. It was hard not to compare ourselves to other families and get jealous as they were able to take their babies home after a short stay.
There were a few scares along the way. The first was when Dylan had been there a little over a month and was getting her 5 AM respiratory treatment when the monitor alarm came on, her oxygen levels had dropped, and she quickly turned blue. They rushed us out of the room and the doctor quickly rushed in. We were sent to the waiting room for what seemed like an eternity, the doctor finally came in and informed us that Dylan had taken out her breathing tube and it was decided then and there they “give it the good ole college shot” by putting her on RAM oxygen and now had a nasal cannula. This was a godsend in itself and we believe it was Dylan’s way of saying she was ready to take us to that next step. We knew the oxygen goals: breathing tube would lead to RAM and from there high flow to eventually low flow and the final step would be room air. We were making baby steps but steps, nonetheless.
Each time a life changing moment occurred; we were lucky enough to be able to stay in a Ronald McDonald room that was inside the hospital each time something drastic happened. We could easily walk to see Dylan whenever we wanted. Marissa spent all her days in the NICU and Patrick was able to work from the RMHC room and visit before work, during breaks, lunch and after work. It alleviated some stress and anxiety that was going on as there was so much uncertainty of Dylan’s situation.
In between all these days spent in the NICU, we hit lots of special milestones. The first time we could feed her (granted it was with a Q-Tip) but it was a first. The first time we could touch her (it was only her finger but there was so much strength in that tiny finger). The first time we changed her diaper (she was finally big enough for us to handle her). The first time we could hold her (she was swaddled for extra precaution). The first time we were able to Kangaroo hold her (that skin to skin contact was exhilarating). Her first outfit (where preemie onesies were still very large on her). Her first bow (when she finally had enough hair to add some style to her ill-fitting outfits). Her first time moving from her condo (incubator) to an open crib. And from that open crib to a full-size crib. Her first bottle feed to her first complete bottle. So many moments that we never once took for granted.
With all these firsts, we spent so many first holidays together. Being born the middle of November, we spent Thanksgiving, Marissa’s birthday, Christmas, New Years, Valentine’s Day, Super Bowl, and St. Patrick’s Day in the hospital as a family. There were a few other setbacks, but we were FINALLY able to see the light at the end of the tunnel.
We started prepping to be discharged and being able to bring our baby home. Dylan passed her car seat test. She had her surgery for her g tube, and we knew she’d be on oxygen while at home. We had to pass CPR, learn how to work all her equipment, and get set up with a DME (durable medical equipment) company. Then finally no more setbacks, on April 4 we were officially discharged. After 137 days, we were ready to go home. We had spent so much time with the doctors and nurses that we considered them like family. It was bittersweet leaving them behind, but we were excited to finally feel like a family of 3.
Our “alone” time only lasted a short while as before we knew it we were following up with multiple specialists for doctors’ appointments. She had an ophthalmologist, cardiologist, hematologist, urologist, and pulmonologist. Then shortly thereafter Dylan was enrolled in EI (early intervention) where she received various services: physical therapy, occupational therapy, developmental therapy, speech therapy, feeding therapy and had a registered dietician assigned to Dylan’s case. We saw therapists both in home and in outpatient clinics.
While Dylan is now two, we continue with a busy EI schedule but have been able to be cleared from most specialists and adding only one: gastroenterologist. This journey has been nothing short of a roller coaster ride, but we couldn’t be more proud of our little miracle and how far she’s come. Dylan Rose is by far our greatest blessing, and we are so fortunate to be her parents.
