The Month of February is Congenital Heart Disease Awareness Month. Today had me thinking about the last 3 years and everything we have been thru. Honestly, I don’t know how I got thru it. From getting the devastating diagnosis that kept getting worse every single time we saw a new doctor, to having to rock him in my arms for 8-10 hours a day just to keep him calm while he was in severe congestive heart failure, to his first surgery in which we spent 6 weeks in an intensive care unit wondering if he would ever come home. During his second surgery (his ‘sutureless’) which was a complete shock in and of itself, we thought we were having a cath, but 4 days later we were having his 2nd open heart surgery. The most traumatic moment was when we came the closest to losing him. I remember his heart rate was getting up to 285 and his BP was dropping to almost 30….
His surgeon, looking very concerned said (which is forever ingrained in my mind) “I have to get in there right now, there is no time for anesthesia to come, I need to operate now.” We left the room shaking….I asked the nurse, “no anesthesia?” I was told, “well he has morphine in his system.”
These moments are the nightmares I live with every day. I know that I will never be the same.
I wear red for Logan.
Today had me thinking about all the children and their parents that I have gotten to know. The children that have passed on from this life are the ones that leave me with a burning desire to advocate and improve the outcomes for our kids.
I wear red for William.
I wear red for Noah.
I wear red for Elise.
I wear red for Pierce.
I wear red Ava.
I wear red for Rita.
I wear red for Jayson.
I wear red for EJ.
I wear red for Brookyn.
I wear red for Savannah.
I wear red for the countless heterotaxy children that I never met but whom I will forever be connected to by heart.
I don’t think its possible to describe the life we lead as parents to these children. The ups then downs, the unknowns, the waiting, the questions that can’t even be answered.
“there just aren’t enough kids alive, with what Logan has to have any real answers.” I have been told that one countless times.
If you just look at Logan’s first year of life, you will get a glimpse, of what our life has been like.
As far from any dream about ‘ideal birth plans’ as one could get
He was taken from me immediately, and I was not able to see him till the next day. Excruciating is an understatement.
Staring at my boys the last night before Logan’s first and most risky surgery, wondering if this was the last time Ethan would see his brother. At this point even though Logan looks like a normal baby….he really only had weeks to live.
His bidirectional Glenn, AV valve repair, TAPVR repair, and SVC ligation.
Yes, this was Logan’s post-Glenn oxygen sats.
See how very blue he was in this picture? It looks like he is holding his breath or something but in fact the path that blood goes after getting oxygenated in the lungs was blocked and he had close to only have of the oxygen in his blood that a healthy child should have.
At this appointment I was told that Logan’s only chance of survival was a bilateral lung and heart transplant, because that blockage was not ‘fixable.’ This was the point that I decided that the only team I was going to listen to was Boston Children’s Hospital. They disagreed, and this is when he had his ‘sutureless’ repair.
Despite Dr. Jim Lock doing an amazing cardiac cath and bringing Logan’s sats up 20 points, it was decided that he needed to have the obstruction surgically removed.
Despite the surgery opening up the pulmonary veins he still settled out in the low to mid 70’s post Glenn. His heart however, was not having to work as hard, and for the first time, he didn’t become drenched in sweat while eating or crying.
Logan on his first birthday. At 12 months old, Logan could not sit, crawl, or roll, Logan wasn’t even strong enough to hold his head up yet. He was medically anorexic and wearing 3-6 month clothing.
This was just Logan’s first 12 months of life.
That is why,
I wear red for Logan.