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Part I: A Mother’s NICU Story

May 2017 Blog, Stories from the NICU Comments Off on Part I: A Mother’s NICU Story

I hadn’t been feeling well that day, kind of achy like the flu, but I figured this was the most exhausting Christmas Break on record, and I was 36½ weeks pregnant, so it made sense that I wasn’t feeling that great. I packed lunches and took the kids to the park. I promised that if everyone came when I said it was time to leave we could get dessert on the way home. After the park and on the way home, I was completely wiped out. I asked my oldest daughter to put on a movie for the younger kids while I took a nap. All the while I was beginning to experience persistent low pressure in my back that I wasn’t going to admit was contractions. It was too early for that to be starting.

I was awakened from my nap with intense low back pressure that I began to realize was coming and going quite regularly.   My husband was thirty miles away, so it was a miracle he got home as quickly as he did. Once home, Steve tried to coax me into the van so we could go quickly. Finally, the thought crossed my mind that if I didn’t get to the hospital ASAP, this baby was going to be born here at my house or in the car, and I did not want that to happen!

Steve ran into the emergency room throwing his license and insurance card at them stating his wife was about to deliver our sixth child, and this was not a false alarm. I made it onto the bed in labor and delivery and into a gown just in time to learn I was fully dilated and free to push.

With the second push, Koby shot out across the bed. We didn’t hear him cry, and it was apparent by how quickly the doctor and nurses whisked him away and started working on him that everything was not ok.   Koby’s heart rate had not been detected for six minutes while in the womb, and the timer above his head showed it had almost been six minutes outside of the womb before they finally got a pulse; they performed CPR during those six minutes until they found a pulse. The severity of the situation became more apparent as we were told that they weren’t sure of Koby’s future.

From the lack of oxygen Koby experienced at birth, he lost many of his abilities and natural reflexes. After they warmed him up from his three days of total body cooling treatment, they told us whatever abilities he didn’t gain back in the two weeks following this treatment would take a lot of therapy, if he could even get them back at all. In the beginning, our prayer was that he could learn to regulate his breathing.   Two days after he’d been warmed back up, he was able to breathe room air and no longer needed the respirator. What a miracle. He’d had seizures due to the trauma of the birth and he had clonus that would cause his arms and/or legs to shake incessantly. He was fed intravenously until about two weeks of age where they began to give him the breast milk I’d so faithfully pumped for him but only in very small amounts through an NG tube as he had no suck/swallow/gag reflex for a very long time.

This situation was so humbling. I had spent time mentally working my may through how we would add a sixth child to our life. I knew to prepare myself for a little sleeplessness in the beginning. I knew not all kids learned to nurse flawlessly right away. I knew other siblings could have a little jealousy and act out. I thought I knew all I needed to know to make this new addition to our family pretty seamless. With these unexpected complications, I felt like I knew nothing, like I was a new mother having this experience for the first time. I was so thankful that within the first few days a nice woman named Melissa from ProgenyHealth called to see if I had a breast pump and offered to get one sent right away. She probably mentioned a lot of other things that didn’t stick right then, and she probably very patiently told them to me again and again because the trauma of the situation consumed so much of my thoughts I couldn’t remember the details of everything. At first I thought, “Who is this lady, can she really help me and is it worth putting my time in to speaking with her?” Because this experience was so new, and I’d never navigated anything like this before, I wasn’t sure what to think or who to trust. I am so grateful for Melissa’s patience and perseverance in getting me on board with the ProgenyHealth program because I came to rely upon her valuable help and insight, and even looked forward to my conversations with her throughout the whole first year of Koby’s life.

Melissa knew I wanted to breastfeed Koby and she knew I would need to pump right away to establish and maintain a supply since he was in the NICU and was not able to nurse. Though Koby never learned to nurse, let alone suck on a pacifier properly, Melissa kept me hopeful and helped address problems I faced while trying to pump for Koby throughout the whole first year of his life. She even put me in touch with Progeny’s lactation consultant who was also very helpful.

Once everything started to stabilize, the only thing holding Koby back from being able to come home was his ability to get nutrition. That’s when the nurses and doctors began to ask us to consider getting a G-tube surgically placed for Koby. The thought of a surgery for this weak and frail baby scared me. Would he be able to handle and survive being under anesthesia? Once again, I was grateful to speak with Melissa when we decided getting a G-Tube was right for Koby. She assured me I could call her anytime and ask questions and get support if needed; this helped to put my mind at ease. Though there were many doctors and nurses who offered information and support about all of this, I was grateful and felt more at ease knowing that I could also turn to Melissa if I became unsure or worried about something, especially after leaving the hospital when I wouldn’t be surrounded by doctors and nurses to help me. I appreciated how she helped me mentally walk through all the care I would need to manage for Koby once he was home.

After five weeks in the NICU, Koby was ready to transition home. We wanted to get Koby home to be with our family, but we also wanted him to be surrounded by people who could give him the care he needed. It took some time to gain the confidence that we could give him the care he needed. There were a lot of things to manage with Koby and all of this type of care was new to my husband and me. We had to feed Koby every three hours through his G-tube. We couldn’t get off schedule or he wouldn’t get enough nutrition. We had to give him his medicine at the correct times; we had to care for his G-Tube site which was fresh and angry from the surgery. He also got granulation tissue around his stoma several times. Melissa was always so kind and encouraging and each time I spoke with her I walked away ready to face the challenges of caring for Koby. Not long after we came home, Koby began to spit up, and since he didn’t have a clue how to get food down his esophagus, he certainly didn’t know what to do when it came up. This brought about a whole new slew of issues. He’d hold his breathe and lose color, which scared us the first few times. Melissa had so many great suggestions. She suggested everything from changing feed speeds and the length of time for feeds, to trying out different formulas. I can’t remember how often we spoke in the beginning, but she seemed to have a sixth sense for knowing when to call. As soon as I needed help or was beginning to be unsure or discouraged about something, she would call and talk me through some good strategies on how to manage things. She even called to check-in with me personally once I hit about eight weeks postpartum. She checked to make sure I was doing okay emotionally and said that should I begin to struggle, she could offer some direction for getting help with postpartum challenges. I was thankful for the awareness she provided. I was so sleep deprived from feeding Koby around the clock that I wasn’t sure I trusted myself to really know if I was okay. After speaking with her, I felt empowered to manage the challenges that lay ahead.

Stay tuned for Part II of this blog article – Koby’s First Year of Life – coming in June


About Our Author:

Sharalee is a proud mother of six wonderful children, one of which has special needs. She enjoys being together and active as a family, playing sports, hiking, swimming, traveling and exploring. She loves to preserve memories using traditional and digital scrapbooking. Sharalee holds a degree in secondary education/technology with an emphasis on multimedia problem solving.