Happy Heart Day Lil Man!!!!
UPDATE: Asking for urgent prayers for a local heart buddy. He had some trouble the other day and had open heart surgery tonight. He is currently on ECHMO and will be for at least 5 days. Lil Man's surgeon worked on him. Keeping Ashton and the Norwell family in our prayers; also all of our cardiac friends at St. Francis. Get well soon Bud!
It is unbelievable that six years ago today, Lil Man had his first open heart surgery! Little did we know the roller coaster ride yet to come.
It was origianlly scheduled to happen about a week earlier. We went to the hospital for the Pre-admissions stuff (tour of the ICU, etc) and our surgeon came in and said that they were going to have to put off the surgery for about 3 weeks. My Mom and Dad were with us. Mom had scheduled her classes around this surgery, along with Big Chris' vacation and FMLA leave. While that was a pain, it wasn't the biggest issue. Before I knew it, I blurted out, "He will be dead in 3 weeks. We don't have time to wait."
Our surgeon looked at me like I just grew two heads. He left the little conference room we were in, and was gone for awhile. Meanwhile, Mom and Dad were trying to figure out vacation schedules and school schedules - I remember Mom chastising me for being so blunt with the doc. I really wasn't that interested. :) If you know us, you know that is a weekly conversation. LOL! He FINALLY came back in and said they could get us in in 4 days. That was better than nothing....
At this point, Lil Man was just barely 3 months old. He had already aspirated several times (although we didn't know that yet), had been diagnosed with seizures and pediatric stroke, and his O2 sats would drop to the 30's and 40's several times a day. Due to the nature of his heart defect, we couldn't put O2 on him. If we did, all of his blood would rush to his lungs, bursting the capillaries and drowning him. We had to get his sats up everytime he dropped them WITHOUT O2. Plus, his seizures were not controlled. He was not having the thousands that we started with, but he was still having hundreds a day. The absolute worst time during surgery was going in to and coming out of anesthesia because it could mask severe seizures, and by the time they realized what was going on it would be too late.
His heart defect was classified as a complete AV Canal Defect and a huge PDA. What we didn't realize was the extent of the defect. Originally, we were told that his heart formed perfectly on the outside and failed to form at all on the inside - no chambers, valves, etc. This is still how I describe things to those who have no cardiac experience. The reality was that his heart was lopsided - 1 cm from being considered Hypoplastic Left Heart Syndrome. It was a miracle he lived that long. They had to build a septum in the heart, making the chambers and valves. He had one flap of his tricuspid valve, the mitral valve was non-existant, both his pulmonary and aortic valves only have two flaps instead of three.
Most AV Canal repairs are made a little easier by the fact that there is either already a partial septum (holes in the heart) , or a ridge down the middle of the heart where the septum should have formed. He had neither. The important thing to remember is that the electrical "lines" run down the heart close to where the septum is, or should be. They are invisible to the docs, you know if you have damage because the heart fails to beat or beats irratically. That ridge is a guide that the heart surgeons use to build or repair without hitting the electrical system. They went in blind on Lil Man. We were prepared that he would be dependent on a pacemaker for the rest of his life. We were also prepared that they would end up having to use artificial valves, requiring a lifetime on blood thinners and replacement surgeries to keep up with his growth. That was also the first time we spoke with a transplant coordinator and found out that they don't do transplants on people with Down syndrome - "because they don't like to waste the organs."....ahem.
The last part of the defect was the PDA. All babies have a PDA. This is a small connection between the pulmonary artery and the aorta. The reason this exists is because before a baby is born, there is no need for the blood to circulate through the lungs to pick up oxygen. This is done through the mother's lungs and passed to the baby through the umbilical cord. Nobody is sure what triggers it, but either during the birth or shortly after, the PDA closes on its own. For some babies it doesn't close. It can be closed with meds, by a cath procedure, or an open heart procedure. Most of the time, it is just a matter of snipping the connection. For Lil Man, the pulmonary artery and the aorta were basically fused, instead of just having a little bridge. So both had to be reconstructed as well.
We went home for a few days and returned to Peoria the day before surgery to do the Pre-op stuff. On our tour through the PICU, we met Barb, Jeff, and little Joshua. Josh was a few days old and had his surgery the day before. He was too swollen to close his chest, so we were able to see what things would look like if that happened with Lil Man. It was amazing to see this little baby laying there, on a vent, with his chest wide open covered in basically Saran Wrap. You could see his lungs expanding and his little heart beating away! We had no idea how close we would become to this family...
The next morning - too freaking early - we headed back to the hospital. While in the surgery waiting room, there was a beautiful little girl running around. She was everywhere at once. Her parents noticed us and came over to make over Lil Man. It was then I noticed that the little girl, Princess Tiffany, had Down syndrome. She was there for ear tubes. She had AV Canal repair at 4 months. Her Mom and Dad kept reassuring us that although it would be hard, things would be OK.
Big Chris and I were the only ones allowed back into Pre-Op. Gamma and Papa had to say their goodbyes at the door. After doing the talks with anesthesia, the surgeon, and about 5 different nurses it was time to hand him over. They don't let parents go to the operating room. He was soooo aware of things that morning, which was unusual. We would not see him that aware of anything for at least the next 6 months, or more. We were told there were three outcomes: 1) he would not survive the surgery, 2) he would survive with either brain damage, artificial heart valves, a pacemaker, or all three, or 3) he would come through with flying colors. We prepared for the worst, but prayed for the best.
Then we waited, and waited, and waited. We waited for 11 1/2 hours of actual surgery. It was 14 hours before we could get a brief glimps of him as he and his entourage flew down the hall with more medical equipment than it seemed could physically fit down the hall - they were moving too. It takes a special group of people to coordinate THAT dance without ripping out something or getting tangled or running into a wall or something.
The surgeon came to talk to us about this time. They ushered us to a conference room and it was actually several docs that came in. The first thing out of the surgeon's mouth, with a sheepish look was, "You were right. He had maybe one or two days left." They proceded to tell us how they repaired everything and what to expect. Another doc came in and asked us to sign consent for what, at the time, was an experimental treatment. They were having trouble keeping his O2 levels up. There was already one other kiddo in the PICU on ECHMO (heart lung bypass), so they treated him with Nitric. (not nitrous) It is lighter than oxygen, but it attaches itself to the oxygen molecules and "floats" the oxygen into the lungs. This allows it to go in to parts of the lungs where O2 couldn't squeeze through. What nobody realized was that Lil Man had Pulmonary Hypertension - fixing the PDA likely made it worse.
We FINALLY got to see him 14 hours after we handed him over. The entire room was filled with I.V's an the vent, etc. It was all very scary at first, but you got used to the equipment pretty quick. As I said, there were three other kiddos up there who were pretty sick - one on ECHMO, the other with an open chest., the third a 4 lb baby with gastroscheisis who was born at 1 1/2 pounds. We would get to know ALL of these folks well.
This started our 6 month hospital stay. We learned many lessons, met wonderful people, and made lifelong friends along the way. We are so proud of how far you have come Lil Man! We can't wait to see what comes next.
BTW - I will try to add pictures later - our scanner is acting up. :(
Hugs!
Steph
It is unbelievable that six years ago today, Lil Man had his first open heart surgery! Little did we know the roller coaster ride yet to come.
It was origianlly scheduled to happen about a week earlier. We went to the hospital for the Pre-admissions stuff (tour of the ICU, etc) and our surgeon came in and said that they were going to have to put off the surgery for about 3 weeks. My Mom and Dad were with us. Mom had scheduled her classes around this surgery, along with Big Chris' vacation and FMLA leave. While that was a pain, it wasn't the biggest issue. Before I knew it, I blurted out, "He will be dead in 3 weeks. We don't have time to wait."
Our surgeon looked at me like I just grew two heads. He left the little conference room we were in, and was gone for awhile. Meanwhile, Mom and Dad were trying to figure out vacation schedules and school schedules - I remember Mom chastising me for being so blunt with the doc. I really wasn't that interested. :) If you know us, you know that is a weekly conversation. LOL! He FINALLY came back in and said they could get us in in 4 days. That was better than nothing....
At this point, Lil Man was just barely 3 months old. He had already aspirated several times (although we didn't know that yet), had been diagnosed with seizures and pediatric stroke, and his O2 sats would drop to the 30's and 40's several times a day. Due to the nature of his heart defect, we couldn't put O2 on him. If we did, all of his blood would rush to his lungs, bursting the capillaries and drowning him. We had to get his sats up everytime he dropped them WITHOUT O2. Plus, his seizures were not controlled. He was not having the thousands that we started with, but he was still having hundreds a day. The absolute worst time during surgery was going in to and coming out of anesthesia because it could mask severe seizures, and by the time they realized what was going on it would be too late.
His heart defect was classified as a complete AV Canal Defect and a huge PDA. What we didn't realize was the extent of the defect. Originally, we were told that his heart formed perfectly on the outside and failed to form at all on the inside - no chambers, valves, etc. This is still how I describe things to those who have no cardiac experience. The reality was that his heart was lopsided - 1 cm from being considered Hypoplastic Left Heart Syndrome. It was a miracle he lived that long. They had to build a septum in the heart, making the chambers and valves. He had one flap of his tricuspid valve, the mitral valve was non-existant, both his pulmonary and aortic valves only have two flaps instead of three.
Most AV Canal repairs are made a little easier by the fact that there is either already a partial septum (holes in the heart) , or a ridge down the middle of the heart where the septum should have formed. He had neither. The important thing to remember is that the electrical "lines" run down the heart close to where the septum is, or should be. They are invisible to the docs, you know if you have damage because the heart fails to beat or beats irratically. That ridge is a guide that the heart surgeons use to build or repair without hitting the electrical system. They went in blind on Lil Man. We were prepared that he would be dependent on a pacemaker for the rest of his life. We were also prepared that they would end up having to use artificial valves, requiring a lifetime on blood thinners and replacement surgeries to keep up with his growth. That was also the first time we spoke with a transplant coordinator and found out that they don't do transplants on people with Down syndrome - "because they don't like to waste the organs."....ahem.
The last part of the defect was the PDA. All babies have a PDA. This is a small connection between the pulmonary artery and the aorta. The reason this exists is because before a baby is born, there is no need for the blood to circulate through the lungs to pick up oxygen. This is done through the mother's lungs and passed to the baby through the umbilical cord. Nobody is sure what triggers it, but either during the birth or shortly after, the PDA closes on its own. For some babies it doesn't close. It can be closed with meds, by a cath procedure, or an open heart procedure. Most of the time, it is just a matter of snipping the connection. For Lil Man, the pulmonary artery and the aorta were basically fused, instead of just having a little bridge. So both had to be reconstructed as well.
We went home for a few days and returned to Peoria the day before surgery to do the Pre-op stuff. On our tour through the PICU, we met Barb, Jeff, and little Joshua. Josh was a few days old and had his surgery the day before. He was too swollen to close his chest, so we were able to see what things would look like if that happened with Lil Man. It was amazing to see this little baby laying there, on a vent, with his chest wide open covered in basically Saran Wrap. You could see his lungs expanding and his little heart beating away! We had no idea how close we would become to this family...
The next morning - too freaking early - we headed back to the hospital. While in the surgery waiting room, there was a beautiful little girl running around. She was everywhere at once. Her parents noticed us and came over to make over Lil Man. It was then I noticed that the little girl, Princess Tiffany, had Down syndrome. She was there for ear tubes. She had AV Canal repair at 4 months. Her Mom and Dad kept reassuring us that although it would be hard, things would be OK.
Big Chris and I were the only ones allowed back into Pre-Op. Gamma and Papa had to say their goodbyes at the door. After doing the talks with anesthesia, the surgeon, and about 5 different nurses it was time to hand him over. They don't let parents go to the operating room. He was soooo aware of things that morning, which was unusual. We would not see him that aware of anything for at least the next 6 months, or more. We were told there were three outcomes: 1) he would not survive the surgery, 2) he would survive with either brain damage, artificial heart valves, a pacemaker, or all three, or 3) he would come through with flying colors. We prepared for the worst, but prayed for the best.
Then we waited, and waited, and waited. We waited for 11 1/2 hours of actual surgery. It was 14 hours before we could get a brief glimps of him as he and his entourage flew down the hall with more medical equipment than it seemed could physically fit down the hall - they were moving too. It takes a special group of people to coordinate THAT dance without ripping out something or getting tangled or running into a wall or something.
The surgeon came to talk to us about this time. They ushered us to a conference room and it was actually several docs that came in. The first thing out of the surgeon's mouth, with a sheepish look was, "You were right. He had maybe one or two days left." They proceded to tell us how they repaired everything and what to expect. Another doc came in and asked us to sign consent for what, at the time, was an experimental treatment. They were having trouble keeping his O2 levels up. There was already one other kiddo in the PICU on ECHMO (heart lung bypass), so they treated him with Nitric. (not nitrous) It is lighter than oxygen, but it attaches itself to the oxygen molecules and "floats" the oxygen into the lungs. This allows it to go in to parts of the lungs where O2 couldn't squeeze through. What nobody realized was that Lil Man had Pulmonary Hypertension - fixing the PDA likely made it worse.
We FINALLY got to see him 14 hours after we handed him over. The entire room was filled with I.V's an the vent, etc. It was all very scary at first, but you got used to the equipment pretty quick. As I said, there were three other kiddos up there who were pretty sick - one on ECHMO, the other with an open chest., the third a 4 lb baby with gastroscheisis who was born at 1 1/2 pounds. We would get to know ALL of these folks well.
This started our 6 month hospital stay. We learned many lessons, met wonderful people, and made lifelong friends along the way. We are so proud of how far you have come Lil Man! We can't wait to see what comes next.
BTW - I will try to add pictures later - our scanner is acting up. :(
Hugs!
Steph
Labels: Cardiac, doctors, New Parents
posted by Stephanie at
5:59 AM
3 Comments
