Most parents never think that they will be challenged with their child’s survival each and every day for weeks straight…but that is what my husband and I endured…
From Day 1 of entering the NICU we were told that our child was going to have challenges and would be fighting for his life. At 1lb 14oz and 31 weeks gestationally, he was already set apart in the world and defined as a preemie. According to God though, he was a fighter, with a purpose, and a future…As hard as it was to hear from the doctors and nurses in the initial meeting all of the problems we could face, I knew deep down God had a plan. There was a reason why our son was placed in the NICU. And as hard as it was to wait and find out what his future held there, I knew that no matter what God was watching over our son. And who better to have His eyes on our son than the creator Himself.
When Xavier was admitted into the NICU, he was hooked up to a feeding tube, a CPAP breathing device, a PIC line, and several monitors to check his heart rate, blood pressure, oxygen level, and lung activity. About three days into being on the CPAP breathing device, they needed to give our son a shot of surfactant (which is what your lungs use to expand and collapse) and this caused him to become intubated. Instead of worrying, we trusted God with what was going on and less than 12 hours after he was intubated he was back on the CPAP and off intubation. The nurses encouraged us to then start “Kangarooing” with him, which basically meant we held him skin to skin for about an hour to two hours a day so that he could start to regulate his own body temperature and get some snuggle time with us.
So my husband and I snuggled with our little man as much as we could.
As time went on, we were moved to different rooms. In one of the rooms, we received a roommate. The parents were awesome. We became friends with them only to learn that their daughter was born without her corpus collosum, which is the sac of nerves that connects the left and right side of your brain. While missing the bundle of nerves was important it wasn’t a life or death situation so everything for them seemed to improve as the days went and we were roomies. About two weeks into our roommate relationship, I arrived to the room to see the Xman (our nickname for him) and walked into a doctor, two nurses, and a social worker with the parents. The first time I had seen my roommate parents cry was when they found out about the corpus collosum, so I knew these tears weren’t good. I immediately left and gave them privacy. When I returned they were moving my roommate and their daughter to another room. One of the nurses came to tell me that the mom would be in to talk to me shortly. A day went by and I didn’t press the issue because I knew that if she wanted to talk she knew I was here. I went over to check on them and when I did she told me she would come talk to me and tell me what’s going on as soon as the doctor was done in the room. And she did…
Her daughter was dying. She was diagnosed with Zellweger Syndrome, which is an inherited condition that is presented at birth and can cause a child to die anywhere from birth until one year. It is caused by a lack of peroxisomes, which are used in the body to get rid of toxic substances. Her daughter was 36 weeks gestationally, born 5lbs and some ounces, and was destined to die before her first birthday…We broke down in tears together. For once in my life I had no words. I didn’t know what to say. And then God told me to shared my testimony. I shared the healings I have witnessed through my friends, the impossibilities become possible, and my own personal healing through my belief in Jesus Christ. I told her that the reason I was in the NICU was to meet her and be there for her and no matter what fate the world had designed for her, God has other plans and that her daughter was in good hands. I honestly don’t know what I would do if I found out I had carried a child for 9 months only to find out that child would die. It was a heart wrenching experience and hard for me to even hear even though she was not my own child. The mother also explained that they didn’t want to switch rooms but the doctors made them. So we visited each other from time to time until her daughter was released from the NICU. We have kept in contact and to date she is still alive and fighting.
Just like her daughter was fighting our little man was fighting his own fight too.
Still on oxygen, a PIC line, feeding tube, and monitors our little man fought enough to gain weight and get to wear some clothes (his first outfit is above). We were so excited and thankful to see him moving forward. All of the prayers we were receiving for our family were working (no surprise there!). Slowly our little man started to gain weight and with that many other accomplishments.
He started to suck on a pacifier…and then started eating from a bottle! We couldn’t have been more proud. Our little man was doing big things! He was shocking the nurses and doctors left and right with his improvements.
He was allowed to snuggle with clothes on! Big deal for a preemie his size!
He even got to wear the preemie clothes his grammy, poppy, grandpa Joe, and friends bought him! What a stylin little man in the NICU!
Eventually he was eating from a bottle at every feeding…then he went on to his next task, regulating his own body temperature…He was out of his incubator within a week of them weening him off. What a proud moment for us to see when we arrive and see a crib sitting next to the incubator being prepared for him! God truly was blessing us with all of these wonderful accomplishments in a short period of time! By Christmas our son was eating on his own and regulating his body temperature and his weight was up to almost 3lbs!
Our little miracle decided to surprise us once more because after that he decided to go off oxygen for a week and a few days in order to prove he was ready to go home! So at 3lbs 9oz, our little man had not only stunned and shocked the nurses but the doctors as well. He was ready to go home! He wanted to leave and get bigger and move onto better things that God had in store for him. All of the nurses we left as friends we will never forget. They were so informative, supportive, and overall stellar the entire time we were in the NICU. We couldn’t have asked for a better staff!
And all of our roomies and their daughters (yep Xavier is a ladies man already), we will never forget and hope to see soon!
The one thing I will never forget at the end of this journey in the NICU is what the doctor said to my husband and I at our exit meeting…he said “Well this has been uneventful”…that’s right it has! My son is a son of the King and Lord most high! There is a plan of prosperity, a plan for a future, and I firmly believe my son will have a testimony that he will one day share with others just as I shared with all of you. Since people usually attach songs to a point and time in their life the one I would say stuck out to me during this entire process is “Walk with Me” by Jesus Culture
Because without Jesus walking with me I never would’ve been so strong, calm, or positive when everything was stacked against our son.
The journey of NICU parents isn’t always easy and it isn’t always hard. But God makes it all worth while no matter what the outcome…because having God makes miracles…and no matter how long they last the miracle itself is amazing. We thank God every day for our fun size currently 5lb miracle! He lights up our lives and we hope that one day he will light up yours!