GrantStrong

From Grant’s Mom:

At week 26 of pregnancy I went into pre-term labor. The St. Elizabeth team was able to stop my labor but sent us to a maternal fetal specialist for a more in depth ultrasound. That day we received life altering news, our baby had one of the most severe heart defects. They said if I were to go into labor again this early in pregnancy that there was nothing they could do. At best Grant would require 3 open heart surgeries, my care would be changed to maternal fetal specialist and I would have to deliver at children’s hospital so that our newborn baby could get the medical interventions he needed.

We were sent to Cincinnati Children’s heart specialists where we were diagnosed with double inlet left ventricle, interrupted aortic arch and transposition of the great arteries. We had so many questions, how would this impact his life? Will I be able to hold him? What will his life expectancy be? The amount of question my husband and I wanted to ask seemed to become endless. While some questions were able to be answered, some we will just have to see where this path takes us.

If you search this diagnosis on line the statistics are terrifying. We are so very blessed to have Cincinnati Children’s Hospital so close because they can beat the odds and perform above average. Children’s said the bigger and closer to term Grant was the better the odds of his survival. Grant had been fighting even before birth, Grant made it to 37 weeks before deciding it was his time on August 28, 2019 at 1252am. 

I delivered at Cincinnati Children’s Hospital. I got to hold Grant on my chest for a couple minutes before they took him to the operating room to place time sensitive lines through his umbilical cord. The time my husband and I had to wait to see him felt like days not hours. When we got to finally see him again, he looked great. Made us question if he really even had a heart defect. We got to spend eight amazing days with Grant until his surgery was scheduled. 

On September 5, 2019 Grant had his first open heart surgery (Norwood procedure) not even at 10 days old. The surgery took what felt like all day. It was over 14 hours until we got to see Grant. Grant’s amazing surgeon said that he did great and there were no complications. We had been warned though that post surgery thing can change very quickly and the next 12 hours were critical to his survival. I’ll never forget coming to see my baby with so many lines and tubes looking grey and lifeless. The first week there were a lot of ups and downs, including a collapsed lung, but Grant kept fighting. After about two months in the hospital we got to go home.

After barley being home for two weeks, Grant oxygen saturation began to dip and for a kid who already had low levels it became dangerous. Grants cardiology team informed us that we needed to get there soon to have him check. We ended up in the cardiac intensive care unit (CICU) that night. Grant needed to be placed on high flow oxygen just to keep his saturations at a safe level. The culprit ended up being a common cold. It was at this time my husband and I truly realized how fragile Grant really was. After a three day stay in the CICU we got to go home.

We kept Grant at home and away from everyone to prevent another hospitalization until his second surgery. Grant’s second surgery (Glenn procedure) happened when he was almost four month old. His surgery seemed to go much smoother and recovered much faster, though something still wasn’t right. Grant was struggling to stay at a safe oxygen saturation without oxygen. Grant’s team discovered that he needed a stent in his left pulmonary artery due to narrowing. On January 8, 2020 we went to the Cath lab where a stent was placed. We went home again a couple days later.

Once home though Grant’s oxygen saturation quickly started decreasing. We took him to the emergency room and we’re rushed to the CICU. Initially we thought Grant had another virus Grant’s team quickly discovered that his diaphragm was paralyzed on the right side. The team decided that an additional surgery would be needed. On February 4, 2020 Grant had another surgery a diagram placation. The surgery is even more painful to recover from an open heart surgery but grant just kept fighting even smiling at times. The diaphragm plication worked and his oxygen saturations quickly rose.

A day later Grant’s team discovered a complication from surgery where his lymph system in the thoracic duct was damaged called chylothorax. The way to treat that is to go on a completely fat free diet. Because of grants heart circulation a lot of his organs don’t get as much oxygenated blood as they need. This makes feedings really rough for a little guy. The team decided it was best to place a feeding tube past his stomach so that the vomiting would stop.

When placing the tube Grant’s nose started bleeding but it wasn’t like a typical nose bleed. Grant was vomiting blood and began to have trouble breathing. The medical response team (MRT) was alerted and Grant was rushed again to the CICU. Because of Grant’s stent he has to be on blood thinners which makes it very hard for his body to stop bleeding on its own. After about 12 hours the bleeding slowed down. On February 18th Grant finally got to come home.

We’ve learned with heart warriors it’s a lot of two step forward and one step back. Grant might be home for now but his journey is far from over with the potential for numerous cath procedures and another open heart surgery (Fontan). But we have one hell of a fighter.

 

 

#Grantstrong