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Challenge: NICU Parenting

Our tiny miracle

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So, I have felt compelled to tell a little story. Eli's story, the shortened version. Fortunately, I have not had to face too much tragedy in my life. The last 4 months have presented some of the darkest times we have ever had to endure. Being crushed repeatedly with awful news takes a toll on you mentally, physically, and emotionally. Starting with Brooke's water breaking at 21 weeks, we were not given a hopeful prognosis. We were given options of terminating the pregnancy or following through with severe consequences. We were warned over and over of the likelihood of extreme developmental issues, including brain function, limb development, and most importantly, lung growth. We were told nothing would be done to save our baby if Brooke went into labor prior to 23 weeks. They would take our son out, and we would hold him for as long as we had. Doctors were preparing us for the absolute worst.
Termination was never an option for us. We couldn't fathom not giving our baby a chance. We would accept the child that God gave us, and adapt to the circumstances. We made adjustments at home and learned to celebrate all of the milestones. Reaching 23 weeks was a huge relief, as Brooke was admitted to the hospital. Although this brought forth new challenges, we were happy to be there. As Brooke endured 12 hours of periodic, excruciating pain with magnesium treatment, I could only watch and give my support. As much as I wished I could take a little bit of the pain away, I was helpless. A feeling we would become all too familiar with, during this experience. Work became a blur; I couldn't think about anything other than how Brooke and the baby were doing. His repeated movement in her belly gave us reassurance that things were okay. We were constantly on edge, knowing that every day in the womb was crucial to his development. Nurses in antepartum made our stay as comfortable as possible prior to our newest son's arrival. They were fantastic and supportive all the way up to pushing Brooke into the operating room.
It wasn't uncommon for countless text updates to come through my phone every day. When I was informed of excessive bleeding and more leaking fluid, I knew what was soon to come. At 25 weeks, 2 days gestation, I received a text stating "you need to get here, they are taking him". My heart sank as I tried to wrap my brain around the situation. I felt sick, with a multitude of thoughts and questions going through my mind. It was too soon, would his lungs be ok?, could he have stayed in longer?, 25 weeks is better than 23.
Ready or not, it was time. Sitting next to Brooke in the operating room, I tried to be happy and excited. I was anxious and terrified. Even through Brooke's drug induced haze, I could tell she was too. When they finally removed our baby, he cried 3 times. This was promising to us, since we were told not to expect the initial cry, due to lung prematurity. In an instant, our baby was rushed off to be ventilated and admitted.
Initially thinking we had more time to prepare, a name wasn't decided. We had it narrowed to a couple combinations and now we had to choose. Eli Louis seemed to fit. After about an hour, I was able to see Eli. As I did my first 3 minute scrub to enter the NICU, I had no idea what to expect. I had only heard stories and seen pictures of premature babies in incubators. I knew Eli was not like a regular newborn, but I wasn't aware of the severity of his condition.
Eli was not doing well at all. His oxygen saturation wasn't getting much higher than 50%. His lungs were hardened and unable to effectively take in air. I was told they were doing everything possible to help Eli breathe. They were doing things for him they don't typically do to babies that early. I attempted to hold myself together as the doctor told us the unpleasant news. He told us survival was extremely difficult and the next 24 hours would be a big challenge. It was up to Eli. He was on 100% support from a high frequency ventilator and still unable to saturate much higher than 50%. We tried our best to stay strong. When Brooke was crying to me, saying she can't lose our baby, I was at a loss for words. All I could do was cry with her. We were both made aware that there was a good chance Eli may not make it home. I could feel my mind begin to go numb as my brain tried to psychologically prepare me for more terrible news.
When the doctors gave us little to no hope at all, we found hope in God. In the midst of my heart being crushed, there were times I felt an unexplainable peace come over me. There were times I felt I knew everything would be alright. There were also many times of uncertainty. One of Eli's nurses made a decision to adjust his breathing tube, which led to a huge turnaround for his oxygen saturation. His saturation levels went into the 80s and 90s and he began to require less support. We are forever grateful for this small step that brought on big changes. She became one of Eli's primary nurses and has been with us through it all. She has cried with us when times are bad and cried with us when times were good.
We were told by many nurses, this would be a rollercoaster. It has been nothing short of that. Your perspective of parenthood is forever altered when faced with this type of experience. When we were looking at our translucent skinned baby through the glass of his isolette, we were changed. When all you can do is watch your newborn vibrate rapidly from an oscillating breathing machine, a lot goes through your mind. When you see your baby literally fighting for every breath he takes, it hurts you in ways I never understood.
As Eli's lungs made improvements, we learned of his brain bleeds. His bleeds went from a possible grade 2/3 to a grade 4 within a week. He was at risk for blood mixing with cerebrospinal fluid and causing long term damage. We were told that 50% of babies don't make it beyond 2 weeks with bleeds this severe. Statistics show 80-90% of these children will have developmental issues ranging from minor to as extensive as cerebral palsy. We began to discuss options for intervention of the bleeds. If his ventricles became enlarged, he would need a reservoir to release pressure and reduce blood in them. There was nothing we could do but take it day by day and pray harder than we ever have.
As time went on, head ultrasounds were done weekly to monitor progression of Eli's bleeds. The ultrasound following the discovery of the grade 4 bleed showed that they were worsening. Blood had began to fill the ventricles on both sides of his brain. As devastating as this news was, we had to move forward. He had other issues that needed to be addressed. Eli's PDA valve in his heart was not closing, therefore causing oxygenated and deoxygenated blood to mix. This was affecting Eli's body systems in a negative way. He was then transported to Detroit children's hospital to have a ligation done. Although it is a routine procedure, it is difficult to send your baby in for heart surgery.
Before going to Detroit, Eli's head ultrasound showed that there was no significant change. This was amazing news because they weren't worsening. The following week's ultrasound showed the bleeds beginning to resolve. We were beyond ecstatic. The brain bleeds became less of a concern and ultrasounds were ordered monthly, instead of weekly. They continued to improve. The last scan of Eli's brain showed no bleed in his germinal matrix. The doctor couldn't believe he was looking at the same brain and ordered another scan to confirm the findings.
We have watched the seasons change out the hospital windows. Warm has turned to cold and rain has turned to snow. In the beginning, we had to leave our baby in the care of complete strangers. Their job was not only to watch over our baby, but to keep him alive. Over time, these strangers became like friends and family to us. We found ourselves trusting them more and more. Their care and kind words never went unnoticed. From countless questions answered to just having someone to vent to, the nurses were there. I feel they could relate to our pain, many having had premature children of their own. They gave us a sense of normalcy when things were anything but normal. They made us laugh and told us stories. We felt welcome in an environment we once knew nothing about.
This experience has forever changed our lives. When you witness your child in a stage of development that isn't meant to be observed, you see things differently. Our family has been brought closer together. Brooke has been absolutely amazing. She has made sacrifices to be the best mother she can possibly be. From doing everything in her power to keep Eli in her belly to pumping milk all through the night, with cracked and bleeding nipples. She absolutely hates pumping and always has. Close to 4 thousand ounces of frozen breast milk later, I know she would do anything for our children. She has spent 3 to 12 hours a day in the hospital to examine Eli's every move. She has learned everything she needs to know in order to feel confident taking care of our extremely premature baby.
The outpouring of love and support we have received has been overwhelming. From Brooke's parents changing their schedules to help with Kelvin and my parents helping out when possible, it means the world to us. Friends and family helping us out and or volunteering any and every service is greatly appreciated. We are thankful for the friends, family, and complete strangers that have prayed for Eli. We are incredibly thankful for such a strong willed boy who kept fighting when we could only watch him.
As long as it has been, this is a fairly good stay in the NICU. One family came in long before us and are still in the hospital. Our hearts go out to them. We will hold them to the day our babies can meet. Our journey has finally come to a close and we feel beyond fortunate. These dark times have brought forth some of the happiest moments of our lives. We have found that God doesn't care about percentages that aren't in our favor. All things really are possible.
81 days later, and over 4 and a half hours of hand scrubbing, Eli has exceeded all expectations. Doctors didn't expect this outcome for him. It was hoped for, but not expected. We don't know what the future holds, but we know that in this moment, we have a sweet baby boy who will be loved and raised to be the best little brother for Kelvin. He is truly our miracle from God.

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