What started out as a blissful pregnancy turned into a nightmare of a birth. To this day, I wonder how we even got through it. I remember the first time I saw Lucy in the incubator. So tiny and fragile. Her skin was so red and thin. All the tubes and wires coming in and out of her. Honestly, she didn’t look like any baby I had ever seen. At this moment, it was all so surreal. I was just there. She was just there. I was in a lot of pain that day from surgery and all I wanted was to lay down and sleep.
I remember for the next two days, I did not even think I was a mom. It never registered in my brain. I did not ask to see her, instead my husband asked me to go. Looking back, I was numb. I was numb to the situation, and I was numb to the emotions. I was just surviving at that point.
I stayed in the hospital for a total of 5 days, and by day four, I started to have a desire to go down to the NICU to see Lucy. We got to hold her under our shirts (aka kangaroo care). It was bittersweet because we knew we would not be taking her with us. We knew there was so much uncertainty about whether she would make it out of the NICU. The one thought that got me through the next several weeks was that she needed to stay in the hospital to keep growing and getting stronger, it was as if the incubator was an extension of my womb.
While at home, I spent my time pumping milk every 2-3 hours day and night. It was exhausting and painful, but I kept at it because it was the one thing I could do for my girl…I mean, I couldn’t keep her safe in me. So this was it. I remember having to deal with clogged milk ducts every single day for the first four months of pumping, and although I was thankful to be able to provide this nutrition, I seriously cried and almost quit every other day.
Another thing I recall vividly was the pain from my c-section. That pain is no joke. I am thankful for a helpful husband who was there for me the entire healing process.
Every day we went to visit our little girl, even if we could only stay for an hour or so. When I left the hospital, I vowed she would not go a day without her parents by her side, so she didn’t.
As I sit here writing this, trying to recall all the ups and downs we went through…I struggle because it all seems like a blur from here. I remember in the beginning weeks, we learned how to “care” for her. We changed her diapers, and checked her temperature. Soon we became comfortable with holding her each time we visited. There were tons of wires and tubes connected to her, it was always a to-do to get her out, and I was afraid to hurt her.
Each visit we looked forward to hear how many oz she had gained and learning of the next accomplishment. Our focus shifted from hoping for a clear brain ultrasound of brain bleeds, to reducing the oxygen support on the ventilators, and then onto feeding. I can never forget the ABD’s of the NICU…Apnea, Bradycardia (Bradys), and Desaturations (Desats). The monitors would beep incessantly every time my girl’s breathing slowed too much, or her oxygen levels went too low, or her heart rate slowed too far down. And it happened A LOT. All of these conditions are so common for micro preemies, and all are so scary. I remember that Lucy had several blood transfusions, countless blood draws, sugar level checks, IVs, x-rays and ultrasounds, so much that I honestly cannot remember it all anymore. One of the hardest things was that she would have one leap of progress one day and then she would take two steps back the next day. It was truly a test of strength and patience.
A moment I remember vividly is when I had gone to visit my girl for a feeding. She had struggled to take from a bottle, and the most she had ever taken was 60 ml, that is 2 oz. She was nearing her due date at this point (when she would have been due if she were born full-term), and I remember having this gut feeling something was wrong. She was quieter than usual, and less active. I got her out of her crib and held her on my bare chest. She looked into my eyes and I instantly felt so much love and sadness at the same time. Here was this little girl that I loved so much but could not take away what was bothering her. I think this was one of the moments that I felt what people call “mother’s love”. Call me crazy, but the look in her eyes seemed like they were saying, “please, something is wrong. help me.”
I told the nurses I felt something was “off” and I waited for the doctor’s rounds. They initially thought it was normal behavior but I pressed and after doing some bloodwork, they found that she had a UTI. Thankfully it was not more serious, but I am so glad I stuck to my gut here. Mamas, listen to your gut.
The time came where all she needed to “learn” was to eat from a bottle before she could come home. Her heart and lungs were fairly stable at this point, which is such a blessing because many preemies are not as fortunate. But, the feeding never progressed despite all of our attempts and I struggled with the idea of going through with the g-tube surgery. Eventually, a nurse, whom I respected very much, said to me, “Mary, this isn’t no feeding issue that will clear in two weeks. You might as well get the tube so you can get your girl home”. She was right, and so we scheduled for the g-tube surgery the following week.
I would like to say the surgery went without any hitches but that wasn’t the case. During post-op, she had a hard time “waking up” from the anesthesia. It was significantly longer than anticipated, and when they did remove her breathing tube, she “clamped down” and her airway closed. They had to reintubate her and place her under sedation to allow the swelling in her airway to go down. This was a terrifying moment for both my husband and I. Here, we finally started to feel like parents…and yet, here we were…facing the thought of losing our little girl.
Thankfully, the second attempt was successful with the help of some steroids and breathing treatments. It was about a week or so later that we brought our little girl home, oxygen tank, monitors, and feeding pump included. We survived our 148-day long NICU journey.