Josephine Marie Gleason

Josephine's story told by her MOMMY...

Josephine’s life might have been short, but her story is so long.  Her journey goes back to when she was still in utero. I had a healthy pregnancy, but at 36 weeks I was told that my baby had intrauterine growth restriction and likely wouldn’t make it to 40 weeks inside of me.  On 37 weeks to the day I had to be induced and Josephine was born via cesarean pretty quickly afterwards as her heart rate dropped with each contraction I had. So on August 8, 2017, my husband and I became parents.  We were blessed with a precious baby girl at 10:17am. Josephine Marie Gleason was born weighing 4lbs 11oz and measuring 18.5 inches long. We will never forget the first time we laid eyes on her and felt her touch as we held her close -- as any parent can attest, it was the most amazing and transformative moment of our lives.

It was during Josephine’s post-delivery exam that the pediatrician on-call at Martha Jefferson Hospital heard a heart murmur.  We were told not to be concerned, so we remained calm and put our trust in our doctors. However, following a couple additional check-ups with Josephine’s pediatrician, the heart murmur remained and it became harder and harder to stay calm.  We were referred to the University of Virginia Children’s Hospital Cardiology Clinic for an echocardiogram “to be on the safe side.” The cardiologist spent 15 minutes stating that “this wasn’t our fault” and that “there wasn’t anything that we did that caused this,” and then he finally announced what he saw in the echocardiogram -- stenosis in our baby’s heart -- my husband’s and my heart sank.  We couldn’t understand how our sweet, perfect, and oh so precious baby girl could have something wrong, and of things, with her heart.

The following weeks involved additional appointments at both our pediatrician’s office and UVA Children’s Hospital.  Luckily, they also involved moments at home as a family, with plenty of hugs, kisses and cuddles. We read books together, took walks, napped, took baths, Josephine watched volleyball with her daddy, and she breastfed and enjoyed skin-to-skin time with mommy.  And literally every minute that we weren’t sleeping, we were just in awe of our sweet baby girl. Staring at her beautiful face, adorable arms, legs, tushy and tummy, and cute little fingers and toes became our new favorite thing to do.

On September 19th, at only 6 weeks old, we took Josephine to UVA Hospital for what we thought would be a fix to her congenital heart defect (CHD).  And watching her be carried away to the catheter lab for her balloon procedure was the hardest thing my husband and I had to endure up until that point.  (We had no idea the trials that lay ahead of us). The few hours that she was out of our arms and sight was completely nerve wrecking. This was our first experience of having to put Josephine completely in someone else’s care, and as a parent, you never want to let your baby go, so it was extremely difficult.  Ultimately, the balloon procedure did not end up happening because once they were inside Josephine’s heart and taking measurements, they realized that the stenosis was far worse than they originally thought. We were now being told that our baby would require, not one, but multiple open heart surgeries -- just when we thought things couldn’t get anymore scary.

Fast forward two weeks and at 8 weeks old Josephine was at the hospital again having pre-surgery testing done, only for us to find out afterwards that our daughter’s surgery was being pushed back a week.  In hindsight, we are grateful that the hospital bumped her surgery back one week, because it was one more amazing week of holding our daughter close and creating memories at home as a family of four (let’s not forget Josephine’s furry big brother/best friend, Cooper.)

On October 13th, at 9 weeks old (and with my husband 6,000 miles away for work) Josephine was back at the hospital for her open heart surgery - and this procedure lasted all day.  I got Josephine to the hospital at 8am, they took her from me at 12:30pm, and I didn’t get to see her again until 1:00am on the 14th! I was warned, but no amount of verbal information can prepare you for the sight you see when walking into the room where your baby is attached to an ECMO circuit - yes, my daughter made it through surgery, but her heart wouldn’t start beating again on it’s own, so she had to come up to the Pediatric Intensive Care Unit on the ECMO (heart/lung bypass machine).  And the next day I was told that the surgery that they thought she wouldn’t need until she was older, was needed now and they had her scheduled for another visit to the OR on Monday (her first open heart surgery was on a Friday and my husband wouldn’t be back from his work trip until Monday night.) On Monday I had both sets of grandparents waiting with me and Josephine’s time in the OR again went smoothly. They were able to fix the supravalvular aortic stenosis, just like they did the pulmonary artery stenosis just a few days earlier.  However, due to the stress from two open heart surgeries, my daughter’s heart still wasn’t beating on it’s own and she again came up to the PICU on the ECMO circuit. Luckily, my husband was now back from his trip and I had him to lean on. My husband pushed the doctors to think outside the box and try everything they could to support our daughter’s recovery. The following three weeks on ECMO, with a number of additional visits to the OR and the catheter lab, were extremely stressful - I hardly slept, I hardly ate, I only showered every few days, I stayed by my daughter’s side as much as I could, I held her hand, I tried to show her as much love as I could, and I prayed.  After three weeks on ECMO, the doctors told my husband and I that our daughter was only alive because of the machine and her heart wasn’t strong enough to beat on it’s own and that it was time to turn the machine off -- my heart died some in that moment.

Here is a letter I sent to my friends four days later:

I don’t know where to begin. I thought I was going to have to send a very different email today. However, God has been listening to everyone’s prayers and my sweet daughter’s heart is currently beating on its own!!! Josephine’s doctors have been giving us timetables and limits since day one and I can’t begin to express how difficult of a journey this has been. On Monday she was taken to the OR again and still wasn’t able to come off the ecmo circuit, and the surgeons said it was time to say goodbye because the only reason Jo was alive still was because the machine was keeping her alive. Jeff and I were faced with having to make funeral arrangements this week, which was the most heart wrenching thing I’ve ever had to endure.  But we asked the surgeons for one last chance and they gave it to us, even though they doubted it would do anything. So on Wednesday we thought we would have to say goodbye to our sweet baby (even though we prayed that we wouldn’t have to), but she proved to us that God listens to our prayers and miracles do happen!!!!!! Her heart is currently beating on its own!!! I hugged the surgeons and the one looked at me and said, “it’s a miracle.” Please keep the prayers coming!!!! Jo still has a very long road of recovery ahead of her, and we are going to take it one day at a time, but she’s made it over the biggest hurdle!  Praise the lord!

You’re probably thinking, wait, you had a miracle baby?...But your heart warrior is an angel now?  Yes, my thoughts exactly. The day Josephine came off of ECMO was the scariest day leading into one of the best moments ever; I’ll never forget it!  She was our little rainbow warrior miracle baby. Josephine was in the hospital for 2 ½ months total, so she spent a lot of time off ECMO fighting to recover fully so she could come home with her mommy and daddy.  After she came off ECMO she required a lot of medicine and around the clock care. And unfortunately, she also had to struggle against something called chylothorax, and her whole medical team was just so sad that she had to face this horrible problem on top of everything else she’d been through.  But boy oh boy was she a fighter! We called her our little rainbow warrior. Some of the doctors started calling her “AB” (for amazing baby). She kept proving everyone wrong. The doctors would tell us one thing and Josephine would do the complete opposite. It was no wonder she was given the nickname AB.  She had such a strong will to live. Unfortunately, her body just couldn’t hold up. She was still fighting as it came close to Christmas, and it wasn’t until very late Christmas Eve that her body told us that it wasn’t able to fight anymore.

Here is a letter I sent to my friends a couple days after Christmas:

It is with an extremely heavy heart that Jeff and I write this email to you all.  Josephine, our oh so precious daughter, passed away on Christmas. We held her in our arms, free from tubes and machines, and watched the sunset. She is now at peace. She was so strong and fought so hard to stay with us, but unfortunately her body could not support her will to live. She is one of God’s angels now, I’m sure of it. She was too sweet, precious, and innocent not to be called to heaven to be an angel. If you can, please say a prayer for her.  And when you see a sunset, please think of her and be reminded to be a kind and loving person, even on your hardest days. Josephine endured some very hard days, but she never stopped opening her eyes and loving Jeff and me. Her look melted our hearts every time and we will be missing her and her beautiful eyes and absolutely every inch of her perfect self for the rest of our lives.