We don’t know when he’ll be able to go home.
This is the famous line that I had to hear from doctors each day while my son, Noah was a patient at Lurie Children's Hospital. Having spent the first two months of his life in the Neonatal Intensive Care Unit (NICU), you can only imagine the frequency of doctors, medical students and professionals alike that came by his tiny incubator-like bed to inspect his throat and windpipe using large tools and flashlights, poke and prod his delicate baby-soft skin with a host of needles for an unknown number of blood tests, examine him with bright, beaming flashlights during the wee hours of the morning while most other babies were still dreaming of clouds and puppies, and of course give their daily assessments so that they could prove to his worried parents why he was unable to finally go home with his family. This is only a small fraction of the emotional anguish that I experienced as I helplessly watched my first-born, spanking new baby boy spend his first several months in the hospital.
In the fall of 2014, I was pregnant with Noah and counting down the days for the new addition of my family to arrive. I was beyond excited and even had a beautiful "Breakfast at Tiffany's" themed Baby Shower to celebrate his arrival with close friends and family. I had attended all of my prenatal visits, went to an upscale women's OB/GYN clinic in the heart of the Magnificent Mile, delivered at Chicago's prominent, state of the art women's hospital, Northwestern and even ate organic and worked out during my pregnancy, which I must say was a struggle considering all of my hourly cravings and urges to indulge in my favorite treats!
Yet still nonetheless, my son was born with a cleft palette, a small hole in his throat which prevents him from properly eating by mouth. He was also born with a severe breathing condition which caused him to have obstructive sleep apnea and intermittent breathing, and a fast heartbeat that wouldn't seem to slow its intensity even in his calmest of moments. On top of this, I was even told that he may have Down syndrome or another possible genetic disease because he had so many “unexplainable features” that his doctors just couldn't seem to understand or define as normal. I remember it like it was yesterday, when Noah’s medical team told me that they were going to test him for Down syndrome and Tay-Sachs disease. Although, our baby was beautiful and looked perfect to his parents, Noah’s doctors felt that there must be something more critically wrong with him in order for him to be born with a cleft palette. They had even shared with us that in most cases babies born with a cleft palette usually have genetic disorders or other chromosomal anomalies.
When I heard this, I immediately started crying. I didn’t know what to do and there were a million things going on in my head about why this happened to him, how could he have Down syndrome when I had a perfect pregnancy, and why did God choose my baby to endure this? I just couldn’t understand it and I was in a situation where all I could do was pray. I tried so hard to be strong for my baby and endure his pain for the both of us, but I'll just be completely honest, I wasn't expecting this and I wasn't fully prepared to take on this level of anxiety and responsibility. I was the girl that was supposed to go home with the adorable, healthy baby boy named Noah. Not give birth and be told less than 24 hours later that my child may not survive and that he had to remain in the hospital for an unforeseen amount of time. This is scary for any parent, let alone a brand new parent with a brand new baby.
I went through so many emotions and patterns of self-guilt during this time. I constantly asked myself what I did to deserve this to happen to my precious baby. Was God mad at me because I had a baby out of wedlock since my significant other and I were not married during the time of our pregnancy? Was this my pay back for mistakes that I've made in the past? I couldn't seem to put my finger on exactly why this happened to Noah, and why I had to endure this struggle and watch my baby suffer in the NICU for what seemed like endless days and nights.
Then, it was this constant yo-yo effect where one day our spirits were lifted by hopeful signs of good news, just to have those same hopeful feelings disregarded by receiving recurrent bad news. It was a constant cycle of "what's the verdict of the day" because each day, we waited like we were in court to be read our sentence, while the doctors were in rounds for their summary of Noah's daily status and their next plan of action for his care. Before Noah even knew how to coo, kick or laugh, he went through two surgeries - one to insert his gastric tube so that he could probably eat and receive his feedings, and the other to bring his jaw forward through a mandibular distraction so that he could breathe properly and resolve his sleep apnea. Before he ever got to sleep in his own bed and see his "Baby Noah's Ark" themed roomed that his father decorated, he spent day after day staring at mundane walls in his hospital room and listening to those loud, massive machines that were connected to him to monitor his vital signs. I so longed to take my baby home and I was so upset and frustrated that I seriously contemplated going "John Q" at Children’s hospital and taking it hostage until they cured my baby and sent him home for good.
As crazy as it sounds, at the time this was almost my last resort seeing the circumstances that we were in, and all the begging and pleading we had do just to bring him home. Then, we had to fight about giving Noah a tracheotomy. When Noah’s doctors told his father and me that they wanted to give him a tracheotomy to help with his breathing obstruction, I nearly broke down in tears. "Our baby is not a scientist project!" This is what I finally said to his doctors because it seemed like every day they wanted to test and try out something new for the sake of trial and error and of course, medical research. Unfortunately, all of this happened at Noah’s expense because he was the newborn suffering in the hospital and unable to enjoy being at home with his family like most babies get to experience. “How would you feel if someone wanted to give your child tracheotomy?” I remember screaming these words to the doctors because I was so angry at the fact that they felt that they could just casually offer this to us as a first resort and like it was no big deal.
Before all of this happened, I had expected to randomly experience a few contractions, somehow muster up the energy to miraculously deliver a 7-10 pound baby, smoother him with undying love and affection, and bring him home to start his new life with his family. What threw me a complete curve ball was to have a perfectly normal pregnancy, have a smooth labor and deliver with little to no pain, deliver a beautiful baby boy with the most stunning pair of greenish-gray eyes that I have ever seen, and then have the happiest moment of my life shattered with the scare that my baby would not survive and was diagnosed with a failure to thrive. This was my reality and for two months, I prayed every day that my son would receive a miracle and that my family’s situation would change.
I begged God to heal our baby, I gathered support and shoulders to cry on from friends and family, and I stayed as strong I could for myself and for Noah. Our Baby Noah had a long journey and went through more during the first few months of his life than most adults have within a lifetime. I am so grateful that he is now cured, healthy, and finally at home for good with his parents -- well at least until he turns 18.
Today our little Baby Noah is 6 months old, kicking like he’s playing alongside David Beckham, and cooing like he has so much to talk about and can’t wait to get it out! He loves listening to music and tries to dance like he's a rock star in the making. He enjoys watching big boy movies and televised shows with his dad, one of which is Law and Order. Don’t ask why. But most of all, he loves his family and all of the kisses and hugs that he receives. Noah is our miracle baby and has beat the odds despite what his doctors thought would be his reality and final verdict. He's healthy, getting ready to have his cleft palette repaired in a few months and has proven that anything can happen if you just have faith and trust in God. I look forward to the day when I can tell him about his special story, show him pictures of the time he spent in the hospital and help him understand that he was chosen by God and highly favored. In the meantime, I'll keep smothering his chubby cheeks with my kisses, holding him like there's no tomorrow and singing him lullabies so that he always remembers his mother’s voice and can feel my unconditional love in his heart. Having a child is truly a blessing and my new role as a Mom has shown me that!
Until Next Time,
Amour Genesis
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