Caleb was born prematurely at 32 weeks gestation at 3 lbs and 14 ounces. He spent approximately 4 weeks in the NICU and Special Care Nursery after birth, to allow him a safe environment for him to grow, learn to feed by mouth and gain weight before we were able to take him home to us and his 15 month older brother Cole. We were so thrilled to finally get Caleb home in our arms and his little Whale Nursery that he would soon find to be his room.
After being home from the hospital for only two weeks, Caleb became very ill coming down with RSV and Carona Virus. After two hospital transfers, and a week at the PICU at Tufts Floating Hospital for Children, Caleb became critical with ARDS (Acute Respiratory Distress Syndrome - ultimately Respiratory Failure). He never "turned that corner" that we were told most children do after day four of RSV where they begin to get better. At first they said, kids always get worse before they get better with RSV, and this is what we were hanging our hats on. This was supposedly a really bad season for RSV and we were feeling the brunt of it. In our minds, Caleb was just in that "worst" part of the illness, and the "getting better" was just around the corner. After picking up my sister at the airport who flew in from CA for extra support and to help with big brother, we arrived at the hospital. I just finished explaining to MB, we were just waiting for him to "turn that corner", but that we would see improvement any day now. I'm the never ending optimist. Instead we arrived at the hospital for her to meet her newest baby nephew, but we were greeted at 7 AM with a lot of long sad faces from the hospital staff. They kept reiterating Caleb is very sick. I knew he was sick, but I didn't understand the underlying message being stressed here. It was not hitting me and maybe I had been in denial from all the signs or indications leading up to this moment. Over this week at TUFTS, they put Caleb on several levels of respiratory treatment each a little more complex than the last, they had put Caleb under intentional paralytic drugs, steroids and muscle and pain medications, this little cherub was pumped with so many different drugs and they were pumping with a bag every several hours or each time his O2 would dip down low and those monitors would being beeping like crazy, trying to suction his little lungs from any fluid they could and would bag him for several minutes until he stabilized again. It became very evident very quickly that Caleb may have only a very short time on this earth with us, and there was one more level of treatment that they could try to help buy us some time for Caleb's little lungs to heal. Caleb had still not yet lived to my original due date at this time. In talking to his doctor, who was 8.5 months pregnant herself, we were informed of our options. Our next and really our last option was for Caleb to go on ECMO. What's ECMO?
Extracorporeal membrane oxygenation (ECMO), also known as extracorporeal life support (ECLS), is an extracorporeal technique of providing prolonged cardiac and respiratory support to persons whose heart and lungs are unable to provide an adequate amount of gas exchange or perfusion to sustain life.
Caleb could go on VV (Venous Venous) ECMO at TUFTS, where they have very well trained and excellent staff to support Caleb on this next part of his journey, or we could transfer Caleb to Boston Children's Hospital prior to going on ECMO where he would have a team of 25 staff overlooking him every moment of the day. Having an army of people to look over Caleb versus a smaller team, certainly sounded like it was going to give us a better shot at saving his diseased lungs. But we were also made aware of the very real risk, that Caleb might not live through the 2.5 mile/10 minute transfer across town. My husband Joe and I looked at each other, we cried together, we talked about how we were not built to make these decisions - if we keep him here he may not survive, if we transfer him he may not survive. What does one do in a situation like this? We prayed. Joe's Mom and brother joined at the hospital, along with my sister, and our Pastor Joel came in to visit with us. My parents were back at our home caring for our now 16 month old son, not sure if they would see his brother and their grandchild again. We had a quiet private Baptism in that hospital room, where pastor Joel crossed Caleb's head with some holy water that one of the nurses brought to us. And then we waited...another hour and a half before the transfer team arrived to bring, Caleb, Joe, myself and a whole lot of HOPE on that 2.5 mile, 10 minute ride across town to Boston Children's Hospital. That was the longest 2.5 mile 10 minute ride we would ever have...
Caleb SURVIVED that ride...GOD bless the staff who helped us get there safely and this was the beginning of our 97 day stay at Boston Children's Hospital. Caleb went into surgery immediately upon arrival and survived his Cannulation procedure. This was to get him onto the lung bypass machine that would ultimately recirculate his blood adding oxygen to support his organs. Caleb spent 30 days on ECMO and from what I understand this was an extremely lengthy time to be on this treatment. But this 30 days was enough to buy him the time he needed for his lungs to begin working for him again. He remained intubated, on CPAP, BiPAP, and all the PAP's out there...and slowly slowly healed over the next several months, weening off of steroids and pain medication. On May 6th, 2016 Caleb was finally able to come back home with us, on a feeding tube and oxygen support... Caleb was finally home.
Today, Caleb is now two and a half, is a happy, healthy toddler who is fully of energy, smiles and laughs, he talks well beyond most children his age and loves to sing and dance and play with his friends at daycare 3 days a week. He hugs, plays and fights with his big brother Cole...and we experience all of the craziness that having two toddlers 15 months apart can bring...and we love...and soak up...and cherish every moment of it.
We would not be here, we would not be the loving crazy and wild family of four that we are, without the amazingly talented, supportive, skilled expertise of all of the doctors, nurses, surgeons, attending's, fellows, students, ECMO and Respiratory specialists, social workers, chaplains, massage and physical therapists, pharmacists, Child Life Services, Family Services, Cafeteria, Janitorial and every other staff member or person who ever shot us a smile on an otherwise gloomy feeling day...of our 97 day stay at Boston Children's. GOD BLESS THIS PLACE AND THE MAGIC THAT HAPPENS HERE EVERY SINGLE DAY.
I am fundraising for Boston Children's Hospital because:
I BELIEVE no parent should experience the loss of a child.
I BELIEVE no sibling should have to watch their brother or sister suffer.
I BELIEVE that by investing in the best doctors and scientists we can save lives - today!
I BELIEVE that donations received before today helped a child I love and
I BELIEVE that every dollar I raise for Boston Children's Hospital will have a ripple effect and could be THE dollar that changes everything for a future family in crisis and pray that they get to take their CALEB home
Please consider a donation to support my fundraising efforts... because I KNOW that when we band together WE WILL help fund Boston Children's exceptional care and groundbreaking research that can help every child.
Until every child is well.