Wow, it's been a while since I have sat down to write a post. I find myself busy and without much to say these days. When Josiah was alive we were extremely busy but I always found time to blog while sitting beside his bed watching him sleep. Now the downtime I have from the girls seems to get filled with many other things.
I've been feeling very nervous since Josiah's death about my girls and their hearts. There is no way to know for sure if HLHS is hereditary or not, but there is a history of Congenital Heart Disease in our family. We also know that if we were to get pregnant at some point again the doctors would want us to have a fetal echocardiogram done to check on the baby's heart. We also know that there are times when CHD can go undetected. Putting all those things together has caused me to worry and be anxious about the state of my girls hearts. So I contacted one of the pediatric cardiologist in this area (who happens to be a friend of ours) and asked him if there was any logical reason for me to be worried. He is a wonderful man and a wonderful doctor who talked us through why we were worried and told us he would be happy to have the girls come in and get checked out. He told us that the "science of medicine" says there is no reason to have them checked but sometimes there is a reason to practice the "art of medicine" and he felt like this was one of those times.
So on Monday we took the girls to have a complete exam done by the pediatric cardiologist. They started with Hazyl and took blood pressures in all 4 of her extremities and then put a pulse ox on her to check her oxygen saturations. Her O2 sats read 93% and that's what the nurse wrote down. Acceptable O2 sat range is 96-100%. Milo and I looked at each other and I think I said, "are you kidding me." We both just stared at each other thinking "here we go again." While 93% isn't terrible and we certainly would have jumped for joy if Josiah's sats ever got to be 93% , it isn't normal for a healthy 2 year old. I started having visions of being back in the PCICU but this time with Hazyl. I just couldn't believe her sats were 93%. We switched to Daylia whose sats were 100% which made us even more concerned for Hazyl. We moved onto them have an echocardiogram done, which they did wonderful through. Our girls were just awesome! It was incredible to watch a healthy, normal heart function on echo. It was truly a beautiful sight and boy do they have big left ventricles! That's the part of Josiah's heart that didn't form and we have gotten very used to looking at his very abnormal heart on echo. I think the echo tech thought we were a little crazy as we watch the screen and talked about it ourselves, marveling over the 4 ventricles and the amazingly functioning valves. It was great for us to see with our own eyes that there hearts looked great. Now I don't claim to know what everything is on echo but I know enough to be able to see without anyone telling me that there were no holes that shouldn't be there, that blood was flowing in the right direction, that they have big thick aortas and beautifully looking valves. We were still nervous though because even though we didn't see anything major we knew that if there was anything wrong with our girls hearts it wasn't going to be the major things. The things our "professional" eyes couldn't see! After the doctor looked over the echo he came back to speak with us and to tell us that everything looked wonderful. I asked him about Hazyl's O2 sats and he had the nurse come back in and check again. This time they sat right at 100%. She probably was constricting blood flow to her finger the first time by holding her finger tense. We were relieved for sure. Both the girls have slight murmurs that are completely normal and will most likely go away as they grow. We appreciate so much our friend and doctor doing this for us, even if it was to give us a peace of mind.
It was really weird being there though. One year spent walking on of the most intense journeys a heart family walks and we had never stepped foot in that office before. We had to ask for directions and sign in like we were new heart parents, but we weren't new heart parents we are seasoned veterans. It made me really sad to have never made it to that point with Josiah. The point of him being well enough to be seen by a pediatric cardiologist in their office. We got great news at the office, our two girls are not "heart kids", but I felt like I wanted to tell the other families waiting there, "we are one of you, we are a heart family, too." There were flyers around the office promoting the next palmetto hearts function in Greenville, free for your child with a CHD, $5.oo for siblings. Looking at that I thought, we can't go, we don't have a child with a CHD anymore. While I know this organization would love to have us at there function it's weird, you belong, yet you just don't belong anymore. Losing a child makes it really hard to fit in places anymore.
One of our fellow families that spent a long time in the PCICU with us got to home for the first time with their precious baby this week. Atticus was born in October with HLHS and had a very rough time in the beginning but God has seen him through and he is now home with his big sister and brother were he belongs. Praise God. We are so grateful for this families homecoming. We also ask for prayer for Maia, Josiah's PCICU girlfriend. She had to have another unexpected open heart surgery last week and is recovering slowly. Please pray for this sweet baby and her parents. She is beautiful and I know how much her parents want her back home.
Thank you for your prayers.
