Lilly Bugs medical fund
Donation protected
This campaign is for my granddaughter Lilly and her parents Alyssa (Nistler) and Frank Samson
On Friday Feb 27, 2015 my Grandaughter Lilly was born in Amery, WI at 36 weeks. But our Journey started even before that When her mother Alyssa went into pre term labor At 34 weeks and admitted into the Hospital for 3 days and then transferred to United Hospital in St Paul where she spent another 4 days and then sent home until her water broke on the 27th.
As Lilly was born the first 45 min were tense as she was in respitory distress. She had to be in the nursery under constant care, receiving oxygen and on C- pap. She had to also be fed via tube as she could not suck. As her condition worsened and talk of transferring her to children's hospita in St Paul loomed, the disision was made early Monday when she stopped breathing and was transferred by helicopter.
Once at children's it was discovered that Lilly has a Rare chromosome 11 duplication(11q11-q14.3)This chromosome abnormality that lilly has, has never been documented before and is one of the largest duplications that they have seen covering over 100 different genes (34.6 mb) Because it is so rare we do not know how this will affect Lilly as she gets older, and have very little information to learn from. Along with the chromosome duplication we learned she has Congenital heart abnormalities, restrictive lung disease, requiring constant oxygen and low muscle tone that will require physical therapy. A swallow study showed that she had feeding discoordination and anything by mouth she was aspirating so surgery for G- tube was set-up.
After 21 days in the NICU it was finally time to go home! We soon realized how difficult daily life would be. Lilly has to be on oxygen, so moving around the house with her requires long tubing to drag around or to wear a portable backpack. Her feedings during the day are every 3 hours and is fed 2oz over an hour, and then there is cleaning out the feeding bag. We are never without a bulb sucker, as her chronic reflux has her coughing, spitting up, choking, bouts of not breathing and turning blue.
As with any new mom, a little help for a few days is needed, so I stayed to help and drive to appointments as they are down to one working vehicle that my son in law Frank drives to work. As I needed to go back home, it was decided Alyssa and Lilly would make the 3 hr trip to stay with me.
On April 1, Lilly had a Cardio checkup so we made the 5 hour round trip to children's. She has a harder time being in a carseat so we had to pull over many times to clear her airway. Later that night as we were getting her night feed started she again started re fluxing and turning blue, this time she wasn't coming out of it and we called 911. Which by the time the first responders arrived she was breathing and good color again, so they did not transport.
2:00 the next day as we were getting ready to go to our local clinic a few blocks away, her oxygen levels dropped and turned blue again. We rushed her to the clinic where she then started throwing up non stop and they called for life flight. Lillys Dr. Jumped in the ambulance and stayed with her until she was flown to Duluth since it was closer and the strong winds that day.
Once we arrived in Duluth an hour away, she was throwing up brown coffee ground blood and was needed to be transferred back to Children's By a fixed wing jet, as all the helicopters were out. Alyssa and I then made the 3 hour drive from Duluth to the cities and arrived at 11:30 pm and met up with Frank at the NICU. Lilly remained at the NICU for 6 days and was discharged on April 7th. Once dicharged she again came back to our home for support and help with transportation.
April 21, we were on our way to children's for a follow up appt with her GI Dr. at childrens when an hour into our 2.5 hour drive Lilly is coughing and spitting up started and needed suctioned. We continued on our way and the coughing increased, and then she started throwing up brown old blood. We arrive at children's and instead of checking in for her appt we took her into ER and she was admitted back to children's, awaiting more answers.
With Alyssa having to stop working early because of pre term labor and Frank missing work due to all the hospitalization over the last 3 months this has exhausted them financially. Frank has insurance thru his work that covers a lot, but the expenses are high. Alyssa planned on returning to work, but with Lillys full time care she will not be able to. They currently live 20 minutes from town but are moving to be closer emergency help and Franks employment.
The donations they receive will go towards help with expenses while hospitalized, traveling expenses to get to appointments, a used work vehicle for Frank, so Alyssa can use theirs to get to appointments. And other expenses not covered by insurance.
For More pictures of our happy little Lilly bug search the #LillyJeanA on Instagram
Check back soon! We will update everyone as we learn more with this hospital stay.
Thanks!!
-Alyssa, Frank, Lilly and family.
Lillys Grandparents are Tim and Julie Nistler,
Jeff and Mary Samson.
Great grandparents Leroy and Brenda Nistler
Thelma tiessen
Art and Minyon Rian
On Friday Feb 27, 2015 my Grandaughter Lilly was born in Amery, WI at 36 weeks. But our Journey started even before that When her mother Alyssa went into pre term labor At 34 weeks and admitted into the Hospital for 3 days and then transferred to United Hospital in St Paul where she spent another 4 days and then sent home until her water broke on the 27th. As Lilly was born the first 45 min were tense as she was in respitory distress. She had to be in the nursery under constant care, receiving oxygen and on C- pap. She had to also be fed via tube as she could not suck. As her condition worsened and talk of transferring her to children's hospita in St Paul loomed, the disision was made early Monday when she stopped breathing and was transferred by helicopter.
Once at children's it was discovered that Lilly has a Rare chromosome 11 duplication(11q11-q14.3)This chromosome abnormality that lilly has, has never been documented before and is one of the largest duplications that they have seen covering over 100 different genes (34.6 mb) Because it is so rare we do not know how this will affect Lilly as she gets older, and have very little information to learn from. Along with the chromosome duplication we learned she has Congenital heart abnormalities, restrictive lung disease, requiring constant oxygen and low muscle tone that will require physical therapy. A swallow study showed that she had feeding discoordination and anything by mouth she was aspirating so surgery for G- tube was set-up.
After 21 days in the NICU it was finally time to go home! We soon realized how difficult daily life would be. Lilly has to be on oxygen, so moving around the house with her requires long tubing to drag around or to wear a portable backpack. Her feedings during the day are every 3 hours and is fed 2oz over an hour, and then there is cleaning out the feeding bag. We are never without a bulb sucker, as her chronic reflux has her coughing, spitting up, choking, bouts of not breathing and turning blue.
As with any new mom, a little help for a few days is needed, so I stayed to help and drive to appointments as they are down to one working vehicle that my son in law Frank drives to work. As I needed to go back home, it was decided Alyssa and Lilly would make the 3 hr trip to stay with me.
On April 1, Lilly had a Cardio checkup so we made the 5 hour round trip to children's. She has a harder time being in a carseat so we had to pull over many times to clear her airway. Later that night as we were getting her night feed started she again started re fluxing and turning blue, this time she wasn't coming out of it and we called 911. Which by the time the first responders arrived she was breathing and good color again, so they did not transport.
2:00 the next day as we were getting ready to go to our local clinic a few blocks away, her oxygen levels dropped and turned blue again. We rushed her to the clinic where she then started throwing up non stop and they called for life flight. Lillys Dr. Jumped in the ambulance and stayed with her until she was flown to Duluth since it was closer and the strong winds that day.
Once we arrived in Duluth an hour away, she was throwing up brown coffee ground blood and was needed to be transferred back to Children's By a fixed wing jet, as all the helicopters were out. Alyssa and I then made the 3 hour drive from Duluth to the cities and arrived at 11:30 pm and met up with Frank at the NICU. Lilly remained at the NICU for 6 days and was discharged on April 7th. Once dicharged she again came back to our home for support and help with transportation.
April 21, we were on our way to children's for a follow up appt with her GI Dr. at childrens when an hour into our 2.5 hour drive Lilly is coughing and spitting up started and needed suctioned. We continued on our way and the coughing increased, and then she started throwing up brown old blood. We arrive at children's and instead of checking in for her appt we took her into ER and she was admitted back to children's, awaiting more answers.
With Alyssa having to stop working early because of pre term labor and Frank missing work due to all the hospitalization over the last 3 months this has exhausted them financially. Frank has insurance thru his work that covers a lot, but the expenses are high. Alyssa planned on returning to work, but with Lillys full time care she will not be able to. They currently live 20 minutes from town but are moving to be closer emergency help and Franks employment.
The donations they receive will go towards help with expenses while hospitalized, traveling expenses to get to appointments, a used work vehicle for Frank, so Alyssa can use theirs to get to appointments. And other expenses not covered by insurance.
For More pictures of our happy little Lilly bug search the #LillyJeanA on Instagram
Check back soon! We will update everyone as we learn more with this hospital stay.
Thanks!!
-Alyssa, Frank, Lilly and family.
Lillys Grandparents are Tim and Julie Nistler,
Jeff and Mary Samson.
Great grandparents Leroy and Brenda Nistler
Thelma tiessen
Art and Minyon Rian
Organizer
Julie Rian Nistler
Organizer
McGregor, MN
