Mamas in Faith

The off white walls of the hospital room where loud that morning, but not nearly as loud as the silence that filled the air as I touched my tiny mans foot. Just moments before I had been told that he was showing signs of seizure activity and would be transferred to a higher level NICU. I had so much guilt, fear, anger and pure terror in those moments. I had never felt more helpless in that moment. I wanted to hold him, I wanted to cry, I wanted to yell… but I was frozen all I could do was sign the transfer papers and hope that he was going to be safe. I wasn’t even sure what I thought safe meant at that point. I wanted to run after him as they wheeled him out of the room in the transportation isolette.

Then began the waiting the first waiting was waiting for me to be discharged. Which felt like years instead of a couple hours. Two years later and it still feels like I had to wait far too long. I had every bad thought pass through my mind in those hours. What could I have done differently? Why is this happening to him? Why did I get pregnant again if it was going to mess up so much? When I see him again will I be okay?

Once discharged we made our way to a place that I was very familiar with. I say we because at the time my daddy was with me, he had been with me the whole morning. He was the one there with me when Josiah was born, he was the one with me when I got admitted. My husband was in California for work at the time, and little did I know I would pretty much endure every struggle over the next couple years without him by my side.

When we arrived at Wolfson Children’s Hospital I knew where to go, it was where my sweet baby girl had spent her first few days. It was where I had finished my final hours of nursing school. It was where I found out I was having a miscarriage from my first pregnancy nearing the end of my college journey. We made our way in, and over to my tiny man.

There he was with leads, lines and looking eyes on him. I felt a peace about him being transferred at this point. But that peace soon became anger as I learned about the poor report they had received and the missing information that I had given them about birth and the first day of life that was extremely important for his care. My short nursing career felt the most important it ever had in that moment. Without that basic nursing knowledge I feel like many other things could have gone wrong that day.

We stood there waiting for a doctor to come by to give us an update, it felt like hours but also a blink of an eye all at the same time. She came over and the news was spilling out faster than my heart had time to process all of it. The good news was that since he had gotten there,  there was no signs of seizure activity on the monitor. The bad news was he was sick, and more than a typical 31 weeker.

The bad news was bad but looking back it could have been much worse. They had done a head ultrasound and it showed a bleed. None of the precautions had seemed to help at all for his brain. The ultrasounds after that would get worse before they began to stabilize.

You are often told that a good date for discharge planning is the due date. That rarely happens. Tiny man was in fact sent home on his due date. There are countless things that happened between January 7 2021 and March 5 2021 but many of those are stories for other days.

It is now two years after we received the news that Josiah had a brain bleed that had the potential to change all of our lives. Has it changed all of our lives? Short answer is yes just not in the ways I initially expected. Today January 7 2023 we got to celebrate my tiny man who actually isn’t tiny in any way. He is on a normal growth chart, he has a huge personality, and so many people that love him dearly. He loves trains, music, trucks and his big siblings. He also adores his papa (my daddy) and I feel like they will be best friends for years to come.

Watching him eat cake pretty much independently today felt like such a huge blessing especially with all the memories of this day two years ago. Two is also the age where they are supposed to be “caught up” when they are born early. Is he caught up fully to your average two year old? In many ways yes, but he is still a little behind. He is further along than I think many of us expected him to be.

None of these last two years would have been possible without prayer.  After getting home that day I knew I had to share the news that he had been born and he was having a hard time. At the time I didn’t know why I felt so pulled to share his story. But now it seems so obvious. He needed the prayers. I needed the prayers. People we do not know and may never know were praying for him. His life up to this point stands as a proof that God is so so good, life is so precious and so much can change in a short of amount time.

            Prayer is powerful. Feeling loved on as a NICU mom is powerful. NICU moms praying and being prayed for is more powerful than we will ever truly know on this earth.

            God is good when it is good, God is good when it is hard. We don’t know what He is up to or what His plan is. But what I have learned in these last couple of years is that He can and will work all things out for His good.

            I will leave you with this this time. If you know a mom in the middle of NICU journey, pray for her she needs it, her baby needs it.

            If you don’t, we will find one to pray for and with your help we will show some tangible love for her.