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Being a parent of a preemie is certainly a blessing in disguise, not one that many people notice at the beginning when all the emotions you are filled with are fear and confusion. However, the story of my son, like all NICU journeys is a miraculous and inspiring one that I’d love to share.
I first learned I was expecting in late May 2012, after what felt like a lifetime of trying. My husband and I were nothing short of ecstatic as many new expectant parents are. I scheduled my first OB appointment and prepared myself for what I thought would be an amazing first in my life.
When Dave and I went to my first OB appointment we informed my OB that my husband carried a genetic translocation, (essentially, if the chromosome is shaped like an “H” one leg of two separate chromosomes has switched). This caused no issues in my husband, and our naivete did not make us consider to obtain counseling prior to trying for our first baby. My OB decided we should see a genetic counselor, verify the findings and learn the ods our baby would be facing.
As a nurse, I was diving in headfirst Anything I could do to learn and explore the better, Dave, like many men didn’t seem to care either way.
We quickly had our first trimester screening and spoke with the genetic counselor, we learned that Dave’s particular translocation was no much to worry about, other than the possibility of miscarriage. Max, our son, looked perfect on the ultrasound and everything was looking great! However, both the genetic counselor and our OB were pressuring us for an amniocentesis. Dave and I both agreed that if there was something wrong with our child, it was meant to be, we both agreed that ending the pregnancy wasn’t an option, thusly an amniocentesis was not of concern.
My pregnancy started to move quickly, and other than having 24/7 hyperemesis, I was loving every little step along the way. After what seemed like the blink of an eye we were preparing for our anatomy ultrasound, finding out the sex was the something we had been excited about since day one, and the day had finally come!
During the ultrasound we learned we were having a boy, and both of us were incredibly happy and overjoyed! The tech left and came back, she told us she needed to take a few more measurements. I, of course, asked a million questions and made her tell me what the issue was. She stated Max was measuring a bit small, then reassured me that since I was a lower birth weight, it’s very possible my son would be, too. Both Dave and I didn’t think too much about it afterwards, the tech left, came back and said everything was great. One week later, at my regularly scheduled check up, I got what I considered devastating news. My OB informed me they were extremely concerned about my son. His ultrasound had come back with small bone growth measurements and an echogenic bowel (or a bright spot in the stomach).
Shocked, is beyond how I felt, after all, the ultrasound tech had reassured us everything was okay. Plus, we never got a phone call prior to the appointment. I simply didn’t understand what was happening. My OB suggested an emergency amniocentesis. He stated since an abnormality was noted on ultrasound, it was best to check Max’s genetic material to see if something was wrong.
We decided to schedule it for the next morning. Of course I went home and researched everything I could, scared myself and simply prayed my little boy was healthy.
For anyone who has been through the painful and scary experience of an amniocentesis, surely you can understand the many intense scary emotions associated. Though, the procedure takes all of 10 minutes total, and it isn’t very painful, the bottom line is it can kill the fetus. After the procedure, I asked the tech to show me my son, and we all sat there for several minutes, monitoring his heart rate and watching him move about, simply to calm my mind.
The next week was agonizing, every minute of everyday seemed to tick by so slowly. Finally, our genetic counselor called, and the results, well, they were fantastic. Max had no known genetic disorders, he wasn’t even a carrier of my husband’s translocation. This was such great news. Now, Dave and I could finally enjoy our pregnancy….
That is until 5 weeks later, October 20.
After much prying from my husband to get me out of the house, I decided going out to see my friends wasn’t a bad idea, I’d soon be entering my 3rd trimester and would likely want to stay home and relax. I hung out with my girlfriends, ate pizza and talked about my soon-to-be motherhood while Dave played his usual Saturday night hockey game. The evening went without incident. The guys came home and Dave and I decided to head home, do some late night grocery shopping and watch a scary movie.
We were about halfway home, and we were talking nonchalantly about our plans for the future when suddenly, I had this terrible, loud ringing in my left ear. I remember turning to Dave and saying, “I can’t hear you.” Then, the whole left side of my body became numb, I remember thinking in my head, “Oh my God, I’m having a stroke!”
I cannot recall if I had said it aloud, but next thing I know I woke up in the hospital. I had quickly learned that immediately after the numbness, I had started to have a large Grand Mal seizure. This happened while my husband was driving, and he somehow had the ability to not only turn around and speed to the hospital we had just passed a few miles back; but most importantly, he somehow knew to turn me on my side and make sure my airway was open. My husband, who has no medical experience, single-handedly saved Max and mine’s lives.
Quickly and without question, I was rushed to our local Level 4 women’s hospital. While in the ambulance, making small talk to the EMT. A whole-body numbness came over me, and I remember telling the EMT, “I’m going to have another seizure.” Sure enough, I did.
Again, waking up at the hospital, learning I’d had another fairly large seizure. This is the point where I don’t remember very much. From the recount of my husband and our family, I am told we were seen by several doctors who told us Max would have to be delivered urgently to save both his and my life. While everyone was in disarray, crying and fearful. I am told, I just sat there and tried to calm everyone down. Dave said, I turned and told everyone, “It’s OK , Max is just coming a little early.”
I remember sitting on the operating table with my husband next to me. I remember thinking, “wow, he looks handsome in scrubs”, I remember in that moment how much I loved him. Then not long after, on October 21, at 2:55 a.m. I was able to steal a glance of my little boy, he was in an isolette and being mechanically ventilated. Dave and I knew he had to leave us.
This is my last memory of the night.
Again, my husband and family recall to me, I was taken to recovery and was doing well. Soon, I had been given the okay to see my son. Within minutes after the news, I had another Grand Mal seizure, then not long after, a second. This second seizure had caused me to stop breathing. A code blue had been called, quickly they had me intubated and sent to the ICU.
Dave was left torn, does he stay with his wife, or his new baby boy? Thankfully, we have an amazing support group of family and friends who helped Dave navigate through the toughest 24-48 hours of his life.
I was soon taken out of my medically induced coma, and was extubated within 36 hrs. All I wanted to know was, how is my son? Is he alive?
Thank God, he was alive, and apparently doing extraordinarily well. I’d soon be able to meet him, finally!
I will never forget the anxiety that filled my body, the fearful thoughts I precured on my way to NICU. What if he is scary looking, or I can’t find it in me to love him yet. When I entered his little room, peered over into his isolette, it was a no-brainer, I was instantly in love.
In my eyes, no child could be more perfect. Though Max’s skin was still fairly translucent, his eyes were fused shut and his hands and feet were double the size of his arms and legs. He had tubes and wires sticking out everywhere, I simply couldn’t help but fill myself with love and joy. I had learned then that Max was only 1lb 7oz when delivered, 11 inches long- so, so tiny indeed.
Soon, I was able to meet with Max’s neonatologist who informed me of the long, roller coaster-like road of the NICU. I knew immediately, I would be there every step of the way.
A long road it was, after 10 days of life, we were faced with the decision of a PDA ligation, as the recommended doses of Indocin did not work on Max’s PDA. We knew the right thing was to go for it, and so we did. After being transferred to our Children’s Hospital, having the surgery, which seemly went without incident, we learned after a few days, and a serious setback in Max’s respiratory status; that his lung had been nicked during surgery and he would need a chest tube.
He thrived through it all, and the chest tube was out one day after returning to his home at Magee’s NICU. Now we needed to focus on growing and feeding, and everything was going fantastic!
Thanksgiving came and passed, in early December Max was able to extubated to CPAP Shortly before Christmas I had noticed a reddened area on Max’s surgical site, I pointed it out to the nurse who in turned showed the Dr, the area was lanced, and he seemed to have an infection. They did the complete work up, and though Max did not have a blood infection, they decided to treat him with 10 days of antibiotic. Again, he thrived and worked through it, like a tough little man. New Years came and went, and he had progressed to using only a nasal cannula. He was also able to start bottle feedings, he was a champ and took to the bottle without issue.
Soon, we were going to be leaving, Max’s neonatologists decided he was well enough to be transferred to a transitional care hospital to work on bottle feedings. Soon, our little boy would be home – but not so easily. After transferring to the new place, and having an eye exam the next morning, Max’s right eye had ROP stage 3 with plus disease- he needed laser eye surgery immediately.
He was quickly transferred back to the NICU and at 10pm that night he had his surgery.
I had to fight with everyone to get him back to the other facility, soon they all gave in and Max was transferred back. In about 1 week he was taking all of his bottles and we were given word he could come home.
February 9, 2013, after 112 days in the hospital, our son would come home.
The emotions one feels are simply unexplainable. My husband and I both cried, we were filled with such excitement and, of course, fear; but we knew it was time, and we knew with Max being home, we could all be whole and start to heal.
We have done exactly that. Max has been home about 3 months now, and every single second of every day has been nothing short of a blessing.
Our son has overcome the many odds of being born so young, he persevered and thrived, even when his mommy and daddy felt as though they couldn’t. Max is our reason for life, he is everything and Dave and I will never take him for granted.
I have learned that while all NICU stays may not be as long, or some longer; other stays more or less complicated, the only people who can truly attest to the helpless and hopelessness of having a child in the NICU are the parents of other babies who have to endure the many emotions and pain of their child not being in their arms. For that, all parents need to give themselves a pat on the back and remind themselves, all things happen for a reason, don’t punish yourself and do not condemn yourself. We need to keep our heads up and look to the future for happiness and health. My son’s birth, single-handedly changed every aspect of my life for the better, and although it was tough and enduring, I would never take it back for anything.