Micro-Preemie Rollercoaster

“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Isaiah 40:31

It can be hard to keep faith and hope during challenging times. But, without hope or faith, life can be very dark and lonely. If you have hope, you want an outcome that betters you and your life. Hope and faith can make a challenging situation bearable, and it will improve your life. Mark has talked to me about his alcoholism at its peak. He said that he truly lost faith in himself and God. He said that he felt hopeless, and he felt like there was no way out. He said that by feeling this way, it made him drink even more. He didn’t know how to change these feelings and drinking made him numb and he drank to forget these thoughts. During the height of his alcoholism, he didn’t realize how much it was affecting our marriage and our family. His brain told him that he needed the alcohol to function and the more his feelings of doubt, hopelessness, and failure surfaced, the more he drank.

During challenging times in our marriage, such as having our preemie babies. We both never lost hope or faith. I believe my upbringing of faith in Jesus is what has always helped me and because I didn’t lose faith or hope, Mark didn’t either. Being a nurse, I knew potential things that could go wrong with preemies during hospitalization and the years after. I tried not to dwell on this, and I did my best to not share any of this information with Mark unless he specifically asked. I have been talking about Kalli and her traumatic entrance into this world. I will do my best to keep this down to a few blog posts. Like I said before, many of you may have followed Kalli’s journey on Caringbridge. I kept her site up for 3 years. For the first year, I wrote daily because of her numerous health issues.

When Kalli was born, Mark and I thought we knew what to expect. After all, Bailee was born at 26 weeks, and she did amazing in the NICU. She never had a setback. Kalli was born at 27 weeks. She was significantly smaller than Bailee at birth due to her IUGR (Intrauterine Growth restriction). I think we were naïve. Or maybe we just had hope and faith and were thinking positively. Kalli’s journey was far from uneventful. Kalli had a PDA (Patent Ductus Arteriosus). Bailee had the same thing and Bailee had surgery within 2 days of birth to correct this. The medical team decided they wanted to wait to see if the PDA would close on its own so she wouldn’t have to have surgery. They gave her medication to try and close this and they thought she was improving. Her blood pressure was more stable. At 7 days old, my Grandpa Kenny passed away. Since Kalli was stable, we decided to make the trip home for the funeral. The NICU team reassured me that she was stable and leaving her for a few days was fine as she was in good hands.

Even a beanie baby was bigger than Kalli

Mark had gone home ahead of me with my dad, Justine, and Bailee. My mom and I were riding home with my two sisters, Sheila and Marci. We were only about an hour out of the cities and I received a call from the NICU. Kalli was not doing well (her blood pressure had been dangerously low, and heartrate high and low oxygen) but they were able to stabilize her. They told me there was nothing that I could do and they continued to reassure me and they encouraged me to go to the funeral. They did say that if she had a decline like this again, they would have to do the heart surgery (PDA Ligation). The next day immediately after the funeral, Mark and I received another call from the NICU. They said Kalli had crashed, literally. She had required CPR to revive her, and they needed our permission to do the heart surgery immediately. They were hoping that this surgery would stabilize her. We felt a lot of guilt. We were not there to be with Kalli, but we were needed at home for our girls and for family since my grandpa had just died.

This puts her size into perspective ….

Kalli made it through surgery, and she seemed to stabilize. We stayed home a few days as it was Bailee’s birthday and we decided to have a party. Why not add a little more chaos to our life. Thank goodness my mom and Mark’s sister Patty helped with the party. I certainly was in no condition to plan anything-physically or emotionally. Afterall, I was still recovery from my emergency c-section. We returned to the cities to visit Kalli. Until my maternity leave was up, I would go with my mom and then Mark would come on his days off, and my dad made sure Justine and Bailee made it to school. Then My dad would bring them on the weekends. Our life as we knew it, would never be the same.

Mark and Kalli

Me and Kalli

We spent Christmas in Minnesota at my sister Sheila's house. This was now our home away from home. Little did we know at the time, just how long we would be needing to stay at our "new home." We made the best of it. Kalli was almost 6 weeks old at Christmas. She still weighed under 2 pounds. At her lowest weight, she was just 15 oz. She had a lot of trouble keeping her blood pressure up. We would measure progress by how many medications she had hanging on her IV poll. At one time we counted over 10. Kalli's NICU stay was already proving much more critical than what we had experienced with Bailee. The doctor's tried to get her off the vent and she would feverously try to breath on her own, only to fail and need the endotracheal tube replaced. Every time they tried to remove her from the ventilator, she would have setbacks for days.

Nathan, Bailee, & Justine Christmas 2005

After the holidays, I went back to work. I only took 6 weeks off. It was awful. I cried the entire first shift I was back. Work was so good to both Mark and me. My work always made sure that I had every Thursday and Friday off as those were Mark's days off. Mark and I made the 350 plus mile (one way) trip at least weekly, sometimes I would stay longer, and my parents would come for the weekend. It was so hard to balance work, Justine and Bailee in school, and traveling to Minneapolis to see Kalli. We often look back on this time in our life and wonder how we even survived. But we did survive. We had the chaplain visit us every time we were visiting Kalli. He was so open and honest with us and he shared with us the statistics of couples who divorce due to having such a sick child. Over 60% of parents of micro-preemies divorce. When we found that out, we were more determined than ever to fight for us and our family. We were in autopilot mode. There was no other way to describe it. We just did it and we never looked back.