Calista Faith Libretti is our beautiful niece who faces insurmountable challenges as she struggles with Hypoplastic Left Heart Syndrome. With consistent doctors appointments, multiple surgeries, and several nights and days spent at the Children's Hospital, we are reaching out to you all, friends and family, to ask for your support. Typically, the hospital bills from these types of procedures and nights in ICU can easily exceed $500,000. Your support will help cover the cost of the $8,000 family insurance deductible and incidentals for all the back and forth trips to the hospital for the family. Please read more about Calista's journey from her mom, Maria's perspective.
"Our lives were forever changed on November 22nd, 2017 as Mike and I were staring at the OB Doctor in shock as he told us that our little girl had Hypoplastic Left Heart Syndrome (HLHS). I was thinking how was this possible and what were we going to do. All I could do was cry and think about this innocent baby and wonder if it was my fault. We did an amniocentesis to test for any genetic disorders and syndromes. The following week we had an appointment with Children’s Hospital Cardiologist Dr. Lisa Howley. This was the longest week ever, researching everything we could on HLHS and wishing that it had been some type of mistake at the previous echo. Next week came and we were again staring at the doctor in shock. This time we knew there was no mistake. We were given all our options and told to think about it over the weekend before we made our final decision. This hit us even harder thinking about how our lives would change no matter what decision we made. After looking at all our options, we decided that we were going to give this sweet girl a fighting chance at life and do everything we could to support her. We then began the monthly appointments at Children’s, weekly echos and non stress tests. The anxiety of waiting for Calista to arrive was increasing as well as the excitement of meeting our baby girl.
Calista arrived into this world on Saturday, March 24th, 2018 surrounded by her family. She was pink and crying and the most beautiful little miracle! I was able to snuggle with her for about 40 minutes before she was taken away to the CICU (Cardiac Intensive Care Unit). I couldn’t stop crying as I was sitting there thinking how am I going to be strong enough to take care of this sweet girl. As soon as we were able to visit her we snuggled her as much as we could. Her cardiac surgeon Dr. Jaggers told us he was ready to do surgery Monday morning. We thought we had a whole week to bond with her and not two days. The day of her surgery was so emotional as we prepared to hand our daughter's life over to these amazing surgeons. We were able to have her baptized and knew that our faith would guide her and keep her strong. The hardest moment was handing her over and watching them carry her down the hall. A million thoughts ran through our heads, all the good along with the bad. So we sat for hours waiting anxiously for some word on how she was doing. A sweet nurse named Esther gave us hourly updates and the moment she said the surgery was done and that everything went well a sigh of relief swept over the room. We knew this was just the beginning but it was a good start.
Calista has to have three open heart surgeries. One at birth, one at 4-6 months which we just completed and the last one at 2-3 years old. While all of them being critical the first one called Norwood is the most difficult. These surgeries are not a cure but a way at giving Calista a chance at life. With no intervention done her condition is fatal. It is unsure if Calista will need a heart transplant in the future. Every child with this condition is different and every child's quality of life is different and there is no way to tell what Calistas will be like.
Her Norwood recovery was very difficult and very long. We spent two months in the hospital and most of the time was in the CICU. Calista had a hard time being weaned off heart medications and they had to do it very slowly. Once she started on formula her tummy decided that it did not like it and she started having severe abdominal pain and blood in her stool. She was than diagnosed with Necrotizing Enterocolitis. She went a week with no food and was on antibiotics. After this, she was diagnosed with a milk protein allergy and had to switch formulas. She was not a happy camper for two weeks with no food. Calista had one more hurdle to jump over before we could go home and that was eating. She was only taking 10-25mls by mouth and she needed to take the 68mls to be able to go home with no eating interventions. After a week of trying, it was decided that she would have a g-tube placed. So after two long months we were discharged on the day her big brother was graduating high school.
During our time in the hospital, Mike and the kids came up every Wednesday and every weekend to see Calista. Being away from my family for so long was very hard. Not being able to see the kids every night and having to miss school functions was difficult. Let me tell you, the hospital food got old pretty quick with only so many options. Going home was the most exciting and scary feeling. We were glad to have our little girl home but scared to be alone with her. Even though I am a nurse, it’s just different when taking care of your own sick baby. It was chaotic the first few weeks home trying to figure out a routine. Calista received several medications in the morning and at night. Medications for her heart and reflux and a shot twice a day for a blood clot. I have to monitor her oxygen and weigh her daily to ensure these numbers stay within a certain range. Calista has a gtube and receives all her nutrition through it and does not take anything by mouth. She needs dressing changes daily and we are constantly watching for any signs of infections.
It has definitely been hard to develop our routine and have a new norm for our family. Going out anywhere is hard because we have to take a pump, gtube emergency kit, milk plus all the normal newborn stuff. We try to make one day a week our day to go get groceries or run errands. With her compromised immune system we have to take extra precautions to keep her from being sick. When single ventricle babies get sick. it is harder on their bodies. A common cold could land her in the hospital for months. So this prevented me going back to work at three months due to her not being able to go to a regular daycare. Calista also has had to come to Children’s hospital weekly to the Cardiology Clinic which we did consistently for three months. This consists of blood draws for her blood clot medicine, weight check, Echos. This all was to ensure that she would be stable enough for her the second surgery.
Calista’s heart cath was done on August 15th which she was kept overnight for observation. The cath was done to make sure all pressures in her heart and lungs were where they needed to be in order to do the second surgery. Mike and I were able to leave with her the next day and take her home until surgery. Her second open heart surgery was August 27th 2018. She had the procedure called the Glenn done, which in simple terms is more rerouting of heart vessels to lighten the workload on her heart. We have to say that this surgery was a lot harder than the first because we have been with her everyday for the last five months. She has her little personality and knows who we all are. When it was time to hand her over to the nurse in pre- op it felt like our heart was being ripped out of our chest! She started crying for us and looking at us like where am I going. The same nurse Esther started giving us updates, first she was put to sleep and all lines in, then switched over to the heart lung machine which I hate to think about, then that they were done and doing an echo on her heart.
Miss Calista also made history during this second surgery. She was also receiving her own stem cells from her cord blood and having it injected into the right side of her heart. This is a study that we participated in with the Mayo Clinic and she is the first one in Colorado to receive her stem cells. Several people from the Mayo Clinic flew here to bring her stem cells and go into the OR while they were being injected. This study is very important to us because not only might it help Calista's heart become stronger, but it will help many more kids with CHD. We are also apart of another study within Children’s that is looking for markers in the blood of kids going through the Glenn procedure. These babies deserve a fighting chance and receiving stem cells might help Calista and other heart warriors.
The first week of recovery was rough because of post op pain, Glenn headaches, and being hungry. Babies can develop what’s called Glenn headaches up to several weeks after surgery. It is when the pressure in the head is too much, like a migraine, and the body has to get used to the new passive flow to the lungs. So the first week was spent holding Calista all day upright to help the blood drain from her head and doing anything to help keep her calm. She has gotten her chest tubes, pacer wires from her heart removed and is off all heart medications. With any stay in the hospital, complications may arise as we faced many with the first surgery. Calista's heart is doing great and has good function but she developed an infection at her incision site. So they placed her on antibiotics which than also increased the length of our second stay.
Mike and I knew going into this that our lives would change drastically not only for us, but for our other children as well. We knew that there was going to be a lot of highs and lows, lots of tears of happiness and sorrow. One day she can be stable and the next day not, at anytime we could come for a check up and get admitted. I carry a bag in the car filled with extra clothes in case that ever happens. It's the fear in our hearts when she is taken to surgery and crying alone in the bathroom. It’s carrying her for hours so her heart rate does not go up. It’s smelling like throw up all day and trying to remember if you even ate any food today. It’s trying to be there for the other kiddos like helping with homework. It’s having to miss family and friend functions to protect her from sickness. We adjust our lives in many ways some easy and some hard.
Calista has a long journey ahead of her and will face many challenges along the way. She will need physical, occupational, and speech therapy so that she can catch up on her milestones. Her path will be hard and rocky but Mike and I will be standing right beside her every step of the way. We believe she was sent to us for a reason and our faith will guide her on her journey. She has been such an inspiration for many especially us. Showing us how fragile life is and how precious time is. She is a fighter, a heart warrior, a miracle but most of all she is our sweet girl!” - Maria
With so many unknowns and uncertainties, Mike and Maria’s immediate focus is on Calista's care and recovery. They will also have to eventually figure out how to balance Maria returning to work and other family priorities in addition to Calista’s long-term care. Mike and Maria help a lot of people and it would be great if their family and friends could help them during this time. Please consider supporting them and helping with some of Calista's medical expenses and possible future care expenses. They are already off to a great start with a $3,500 donation from BK-DUV Golf Tournament in Greeley.
Thank you for taking the time to learn more about Calista's Heart Journey and for your support. And if you can’t donate at this time, please help us share her story. Maybe it could help other babies in similar situations.
Welcome to History Calista!
Calista’s Aunts - Kathy & Selena
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