It was about 12:30 in the morning at Ruby Memorial Hospital on Wednesday November 27th when the doctors and nurses burst into our room waking both MK and I saying “it’s baby time!!”. It surly was. Four minutes, three pushes, and Colette Coco Kilgore had arrived. And that my friends, was the last easy thing that happened.
It was after Coco had met her big brother and my parents that our nurse mentioned she may have heard a murmur. She reassured us saying that it’s very common with babies whose moms had gestational diabetes (which I did with both kids) and that it would probably resolve on its own but they would get an echo just in case. This was about the time Coco went to the NICU for her low sugar levels.
Nothing could have prepared us for what was about to happen next. Upon my discharge and just getting home we receive a phone call telling us Colette’s echo had shown she had Hypoplastic Left Heart Syndrome. Left speechless and sobbing we rushed back to the hospital for more information. We were told over and over how shocked everyone was because she had shown zero symptoms upon birth and typically babies do. They told us that it was possible her heart could grow with her so we needed to give it a couple days and go from there. After some deliberation it was decided it was best for Coco to go to Children’s Hospital in Pittsburgh and off she went.
When we got to Children’s, things didn’t look good. It had appeared that things were worse than Ruby originally thought. Days went by (feeling like an eternity) while our doctors and surgeons decided what the best course of action was going to be for our girl. It was decided on by about 30 brilliant minds what exactly needed to be done. Surgery was set for December 6th at 2pm to repair her arch, narrow aorta and fix the mitral valve so that blood would be able to flow correctly. We also found out she did not have Hypoplastic Left Heart Syndrome but instead had Shone’s Complex which by definition is a rare congenital heart disease consisting of multiple left heart obstructive defects.
As we stood there numb and expressionless our surgeon explained in great detail what she was going to do, what could go wrong, and the outcome she was going for. I don’t remember much at this point but all I could think was “just please save her”.
From start to finish the surgery was going to take six hours. We truly had no idea how we would ever be able to make it through those six hours. Lots of praying, pacing, crying, coffee, and thankfully a movie that somehow distracted us just enough.
Never in my life will I forget the extremely smiley face of our surgeon Dr. Luciana da Fonseca Silva saying everything went extremely well and better than even expected. With tears streaming down our faces we were finally able to take a breath. I’ll forever be grateful to this brilliant woman and all involved in this surgery.
Dr. Luciana da Fonseca Silva
Seeing Colette after surgery was hard. We knew it would be. They had to keep her chest open for a few days just in case there was swelling. On the Sunday following her surgery they closed her up. Most of the days after were a blur of small things that were wrong and how they planned to fix them. And they did. It was always hard not having her with us but each day got easier. One issue she was having was her fluid output from her chest tube from the surgery. It seemed to be a lot and it was basically a waiting game. They couldn’t start feeding her until this issue was resolved. We are told it can take around 6-8 weeks from the surgery for the fluids to subside in some babies. The following day we go to visit with Coco and notice that she has no chest tube…
MK and I just look at each other. What happened? Yesterday this seemed like it would be here for a while, right?! As it turned out our little warrior decided she was done with it and pulled it out with her feet. They said that they wanted to see what would happen and if her body would absorb the extra fluid. There was still a possibility that they would need to put the chest tube back in but for now we wait. And wait we did. Every day. Holding my breath. Waiting for the call that they had to put it back in. But the call never came.
She only got better from there. Every now and then there would be an issue or two that they would come across and fix. In the middle of January, she was “fine from a medical and cardiac perspective” but was having trouble learning to eat again. We were advised to move her from Children’s Hospital to “The Children’s Home” five minutes down the road. There they would work with her and try to teach her how to eat again.
I had no idea how frustrating such a seemingly simple concept could be. She started to eat again just not fast enough. After a month there we decided to go with the “Gtube” route because we just wanted her home at this point. She went back to children’s on Wednesday February 12th for her “tube” surgery and did great. She was due to come home that following Saturday but what seemed like a full circle situation had to stay a few more days due to low sugars. She is believed to have “Hypoinsulinemia”. Which is basically the opposite of having Diabetes. They made the decision to send her home on a continuous feed. The thought it that she may grow out of it. I test her sugar levels every 6 hours to make sure they aren’t going too low.
Then, for what seemed like another hurtle, her next echo didn’t look great. They decided to take her to the Cath Lab to see if they would be able to balloon her Arch, and Aortic Valve. It didn’t go super well but they felt she was okay to go home for now. She will probably need another surgery sooner rather than later.
When we finally got the call that she was actually going to get to come home we were skeptical since we’ve previously been teased with this. But when it happened, it didn’t feel like real life. We packed up her belongings, put her in the car seat and for the first time we were able to leave the hospital as a family of four.
We know this isn’t the end of Coco’s surgical road and this isn’t the end of “hospital life” but for now we are just happy to have our girl home and are going to enjoy every second of it.
Once again, we want to so deeply thank the absolutely overwhelming support we’ve gotten from not only friends and family but also from people we haven’t heard from in a while and even complete strangers. When the fog from the awfulness finally lifted and we looked up to see who was there and who had been there all along, our hearts were so full.
Also, thank you to Ruby Memorial Hospital for doing everything you possibly could for Colette. And to UPMC Children’s Hospital for not only saving our girl but for all the care afterwards.
