About five hours after he was born, Kallen was quickly rushed away from us to the NICU with a declining body temperature of 93 degrees and a blood glucose reading of 13 mg/dL (the normal range is 72-108). As scary as this was, we quickly found out that his temperature recovered and that we were just waiting on his blood sugar to stabilize.
From here, things only seemed to be getting worse. Kallen was not able to hold his blood sugar levels in between feedings, so the doctors decided it was best to put a feeding tube in through his nose.
After a few nights staying in the NICU with Kallen, our fears that we wouldn't be able to take our son home with us finally set in, and we were convinced by the nurses to go home and rest. That night, we received a call from the doctor stating that he heard a heart murmur and believed there was more to Kallen's sickness then just his unstable blood sugar levels. He informed us that Kallen would be transported immediately to the University of Minnesota Masonic Children's Hospital for a more thorough evaluation. We were devastated that we left our baby's side and we rushed back to be with him.
The days to follow turned out to be the most challenging days of our lives as we learned news that no parent ever wants to hear. The diagnosis was that Kallen has a heart disease called Double Outlet Right Ventricle and that it would require surgery in the coming months. This was only the start of a thread of overwhelming news about our baby's health. The doctor's began testing Kallen for chromosomal abnormalities. After the blood work came back, we found out that he has an extremely rare genetic disorder that could potentially affect him for the rest of his life. The doctor's haven't given us a very positive outlook, but because of the rarity of this disorder, we do not yet know the extent to which this will affect him in the years to come.
We know for certain that our baby will need at least two separate surgeries and the doctors also mentioned that we would most likely need to utilize different therapies for him as well throughout his childhood to assist with developmental milestones.
Even though the doctors haven't given us the best of outlooks, we haven't lost hope and are still believing that God is working miracles - and we are believing in one for our baby boy. First and foremost, we desire our friends and family to pray for our little warrior. Specifically, pray for his breathing/blood oxygen saturation levels to stabilize on his own.. Stable glucose levels so we can work on oral feedings.. and lastly an overall growth and strengthening so that his body can be ready for surgery.
Secondly, as hard as it is for us to be vulnerable and ask for help, medical expenses have accumulated much faster than we could have ever thought or prepared for. Any donations will go directly to help Kallen graduate from the NICU and go through therapies to strengthen him for heart surgery and beyond.
We are so appreciative to all of you that have reached out with prayers and to show your support. We will continue to update you all on Kallen's progress through this page as our journey continues.
- Nicole Johnson
- Liz Gorans
- Colten Gettler
- Kaylee Olson
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