Praying for a Miracle

"I am the Lord you God who takes hold of your right hand and says to you, do not fear I will help you." Isaiah 41:13

Baby snuggles are the best. Snuggling up to their soft baby skin. Smelling their newly washed hair. Listening to their sweet little sounds they make as they eat and sleep. A baby truly represents God's miracles. How amazing is it that a perfect, tiny human can be made? Babies can bring so much love and joy to a family. They are so innocent. They are so perfectly and intricately made tiny humans. "A new baby is like the beginning of all things-wonder, hope, a dream of possibilities. “

Our Granddaughter Paislee Mae

My story of Kalli continues. As Mark and I get to snuggle with our new granddaughter Paislee, I get emotional. I am so grateful that Paislee is healthy, and she made it to term. Mark and I have talked a lot over the years about having Bailee and Kalli so early. We feel like we got cheated. I got cheated out of a full-term pregnancy and we both got cheated out of the newborn experience with them. We know this was God's plan and it happened to us for a reason, but I am reflecting on feelings we have had to deal with over the years. Dads get to cut the umbilical cord and then the baby is handed to the mom to lay on her chest. We didn't get to do either of this with Bailee or Kalli. We didn't even get to hold Bailee or Kalli for 2 weeks. They were not stable enough. All we could do was stand by their isolette and place our hands through the isolette ports. Sometimes Kalli was too unstable, and they didn't even want us to touch her as they felt it would stimulate her too much. They also often placed a blanket over her isolette as she was sensitive to light.

When we finally got to hold Kalli, it was a 2–3-person process. She had so many tubes, wires, and IV's that had to be moved with her. They would place her on our bare chests and allow us to do "kangaroo care." She always seemed content when we did this, and statistics prove that kangaroo care improves the preemie. It has been proven to stabilize their heart rate, improve their breathing and oxygen level, maintain their body temperature, and it can have a positive effect on their cognitive and mental development. It's one thing to do kangaroo care on a full-term infant or even a preemie baby who is breathing on his/her own. But to do this with a micro preemie who is on a ventilator, feeding tube, and IVs with 10 different medications, that is quite a process and one that we will never forget. It is also something we are so grateful that we were allowed to do. It made us feel like we were doing something for our daughter. We cannot thank the NICU staff enough for all of their hard work and time to make something that should be so simple, yet was so complicated; occur.

Kalli’s hand against mine January 2006

Mark and I continued to make the long trip to Minneapolis weekly. We were always welcomed to my sister's home with open arms, and they never made us feel like we were not welcome. Mark and I had a deal, if Kalli was having a good day we would celebrate with a nice meal out. If she was having a bad day, we ate at the hospital or near it and on the way home I would get to pick her out a new outfit. It was our way of dealing with the stress and keeping the hope alive. I still had a goal. I was sure that Kalli would be able to go home by her due date, which was the middle of February.

There were a few times Kalli pulled her own vent tube out and each time the doctors found that it was more difficult to reinsert. On January 4th, 2006, she reached her 1000 grams (2 lb. 3.2 oz). They decided it was time to try to take the vent out for good. They tried to remove it and Kalli's airway instantly swelled. She struggled with every breath; I was there watching every moment of this. They gave her epinephrine nebulizers in hopes it would help with the swelling. It got worse and they decided to re-intubate her. Before they could even try, her heartrate dropped so low they had to perform CPR. As they were performing CPR, they began giving her medication to intubate her and they had quite a time getting the tube back in. They nearly had to perform a tracheostomy, I stood by in shock as I watched the NICU teamwork feverishly to revive Kalli. It worked, but what effects would this have on her future? I was terrified. I remember calling Mark and I was crying so hard that I don't know if he even understood what I was saying.

They decided to do a bronchoscopy to see what was going on and they did discover she had a granuloma in her trachea. They were able to remove this without issues. They had try to extubate her numerous times and each was unsuccessful. By the middle of January, she was up to 2 lb. 7.5 oz. They decided to put her on high dose steroids and then scope her again prior to the next extubation, when they scoped her on January 17, 2006, they discovered that her vocal cords were extremely swollen and this was posing a huge problem. The granuloma did not grow back, so that was good news. They decided to put the vent tube in through her nose and completely sedate her for a week so she wouldn't be able to pull on her vent tube, they continued to give her high dose steroids, in hopes that the swelling would greatly decrease. The NICU staff was optimistic, but the surgeon gave us the grim prognosis that this would prove successful. During this week, she was fed via TPN (Total Parenteral Nutrition). This is done through a PICC line. She was too much of a risk for aspiration due to her medically induced coma and paralysis.

The NICU staff stated they were hearing an "airway" leak during this week of paralysis. This meant that the swelling in Kalli's airways was decreasing. On January 24, 2006, as a team of 7-8 individuals stood around Kalli, they removed her endotracheal tube, and she was breathing on her own. She did require high flow oxygen, but she did not require the ventilator. At times they would switch between high flow oxygen and c-pap. Kalli started to develop strider, which is like wheezing. The NICU staff and ENT surgeon were optimistic that this would subside. She was switched to full c-pap as the high flow oxygen was not enough to sustain her oxygen levels. The beginning of February I asked them to try her off c-pap and only do high flow oxygen and they agreed. Kalli continued to be critical, yet stable. She would periodically need Lasix to get fluid off her lungs and heart. She was working so hard to breath that it was starting to affect her heart. She developed RVH (right ventricular hypertrophy).

Mark holding Kalli

Grandma Linda and Kalli

Kalli's due date came and went. Her hospital bill had already reached over $1 million in less than 3 months. We had a long meeting with the NICU staff about Kalli and her prognosis and potential length of stay. They decided that ENT needed to be consulted again and another bronchoscopy needed to be performed. We were so concerned because this meant Kalli would have to be put on the ventilator again for a short time. We knew that this could mean she would have trouble coming off it again. Fear overcame us, but we knew it had to happen. We tried our best to remain optimistic, but the nurse in me knew what was potentially coming and I tried to hide it from Mark. He asked me to be completely honest with him as to what I was thinking. I didn't want to say, but I knew it was a real possibility. I finally told Mark that it was a real possibility that Kalli may have to have a tracheostomy and feeding tube, He was in shock when I said this. I told him that all we could do was be positive and pray.