Gabriel | A New Normal Story
I had the amazing opportunity of photographing the world's sweetest boys earlier this year. One of those boys suffered very early on in his life - immediately upon being born, I should say.
I really felt strongly in my heart that their story needed to be shared, but as a mom of a cardiac kid myself, I knew the story was not best told by me, but that it would be best told by mom - the one who spent every waking moment by her baby's side. The one who felt every heart wrenching and joy filled moment. The one who lived through it.
So, along with our session together (below the story), here is Deju's testimony of what it was like to be the mom of this miracle boy and the journey they took to get him home.
Since the beginning, Gabriel was always so much smaller than his brother. They were identical twins. We had to keep a good eye on him, which ment more appts than a regular pregnancy. He was my Baby B!
At 16 weeks pregnant they found fluid around his heart. We had to keep an eye on it. Because Gabriel and Greyson had to share a placenta, his umbilical cord was attached to the very edge of the placenta making it hard for him to get enough blood flow. He also had a one vein, one artery umbilical cord (when usual cords are 2 and 1). At 23 weeks pregnant, we went in for an ultrasound to check on the fluid around his heart. It seemed to be getting better at that point. However, when the tech was doing the ultrasound that day, she had a terrifying look on her face. When I asked what was wrong, she said she needed to get the doctor. When he came in, he explained that it looked as though his CSV was missing (the connector that connects the right side of the brain to the left). He sent me in for an MRI that day, and they suggested I bring my husband with me. Once the MRI was completed, the doctor sat down and told my husband and I that Baby B had IUGR..Inner Uterine Growth Restriction. It meant that his heart was working too hard because he wasn't getting enough nutrition from the placenta (that's why he had the fluid around his heart) and they had also confirmed that he was missing his CSV. They told us we needed to make a decision. If we continued on with the twin pregnancy, there was a chance of Baby B passing away, which could kill Baby A. Or, if we went to Colorado, they would cut Baby B's umbilical cord giving baby A a 99% chance of survival. How could we ever choose one baby over the other? We left it all in God’s hands and continued on with both of our boys. We knew he had fought so hard up until that point and that he wasn't giving up, so why would we then give up on him?
At 29 weeks he had reverse flow, which means that, instead of getting blood to his body, the placenta was taking blood out. I was hospitalized from 29 weeks until the day they said it was time. They knew he would have a better chance of survival out than in, so at 32 weeks they delivered me via C-Section. The boys came out weighing in at 2lbs for Gabriel and 3.14 for Greyson. There was nearly a 2 pound difference.
Gabriel was so tiny and beautiful. He was actually the better breather at first. Greyson had to be intubated. They explained to us that the babies who were preemies and had been struggling in the womb are usually the strongest breathers because they worked so hard already. But, soon that changed and they were both on bubble C-Pap machines. Greyson grew and grew. He did have an atrial septal defect, but it wasn't affecting his breathing. We were able to wean him off the oxygen, get him to bottle feed, and had him home the day before Halloween. He had been there for two months.
But Gabriel wasn't growing. The holes that are in your heart in utero are meant to allow oxygen and blood to flow freely. When a baby takes their first breath, those holes close. But Gabriel was so small and underdeveloped that his never closed. He would breath 160 breathes per minute when he should've been at 30 to 60. He would burn so many calories just trying to breath that he wouldn't gain weight. I knew that eventually we would have to get the holes closed. He had an ASD, a VSD, and a PDA, not to mention valve issues. His heart became large because it was overworked. He was tested for MRSA every Tuesday. I dreaded it because I saw the other families in quarantine. They couldn't feel their babies with their skin. One fateful night, that nightmare came true for us, too. He tested positive and I couldn't feel him any more. I had to wear a gown, a mask, and gloves for the rest of his stay because he tested positive for MRSA on his skin. I had to spend 6 months of the beginning of Gabriel's life not being able to kiss him with my lips or feel him with my hands. It was devastating.
After months of waiting, a surgeon came in and told me we needed to discuss Gabriel's heart. Because Gabriel had reached 6 lbs, it was time to fix him. At the time, I was thinking a catheter through the ribs or something of that nature. He explained to us that he couldn't fix all of Gabriel's holes that way and that, unfortunately, the surgery had to be open heart. I couldn't breath. I cried and everything went black.
The night before his surgery, I stayed with him all night. I held him. I cried and I laughed. I kissed him. I was not going to wear those gloves, the gown, or the mask. That night, I was going to love my baby and feel him and hold him close. And there was nothing they could do to stop me.
On December 7th at 7:30 am, I had to hand my baby boy over to the nurse to take him to surgery. I watched them wheel him away his crib and I fell to the ground. My husband tried to console me, but the only thing that could was my baby back in my arms.
After five hours, two bags of blood, and 4 phone calls on the hour every hour, the surgeon finally came out. He kneeled in front of us and we heard the sweetest words.
HE DID GREAT.
I never loved someone I didn’t know so much. This surgeon saved my baby's life. He touched my baby's heart. I will always love this stranger.
After the surgery was the hardest of all the days. He was intubated for a long time. The wires and tubes coming out of my baby were overwhelming. He was kept sedated for a whole week. All I wanted was to see his eyes and to see him smile, but I knew he needed to heal, so I would just kiss his cheek when I came in and when I left the room. They told me he needed very little stimulation, so talking and touching was limited. It was 3 weeks of this.
When they took out his breathing tube, I got to see my child breathing normal for the first time ever. He was calm. His breathing was at 34. I knew he was going to be ok from that moment. His heart was all better. He no longer needed oxygen at all. I saw my baby's face free of tubes and wires for the first time since he was born.
He had a high resistance to the fentanyl pain medication. He needed more than usual. He would shake and sweat and whine because he was withdrawing. And he would feel pain. To see a baby go through withdrawals and know there is nothing you can do to make them feel better except give them more of the drug they are addicted to is an awful feeling. We used methadone to wean him off, but as we lowered the dose every day for few days he would have withdrawal episodes. It's hard because he needed the pain medication, but then it did this to him. Once we took him home, we were weaning him with methadone for a month.
After he recovered, they moved him to pediatrics. Oh my gosh, I was so happy that day! That was a huge step. It's where they put them when they’re going to get to go home soon. I couldn't wait. We worked and worked with him on eating, but he had gone too long not knowing he had to eat to feel full, so he didn’t want anything to do with it. Unfortunately the hospital doesn't keep you for not wanting to eat, so we had to get a gtube. At this point, I was ok with it because it meant he would get to see his home for the first time, and it would BE his home for the first time. We had to go through month-long classes and overnight testing just to make sure we knew and would be comfortable with what we had to do on our own at home.
On January 29th, we finally got to bring Gabriel home. It was the best day of my life.
All of my boys were finally together like they were meant to be.