August 24th, 2012….
I hate sleeping at the hospital! I had made it very clear that I wanted all the doctors (OB, Pediatrician, etc) to do what they had to do in the morning so that we could be discharged asap. I got up, did my hair and makeup, packed everything up and then climbed back into bed to snuggle my little guy until we got the go ahead to take off. At some point during this time the pediatrician came in to check Bennet out and everything still looked ok. We had the ok to be discharged as soon as Bennet had his circumcision and final scans/tests completed.
I had no idea that this would be my last moment with my sweet baby before everything changed, but I would spend the next few weeks thinking about this time and wishing I had cherished it more.
What happened in the next hours is incredibly difficult for me to relive. So forgive me, if my usual writing style goes out the window while I share with you.
At about 11:00 am the nurse came to take Bennet back because the Doctor would be there in an hour to do the circumcision. They decided to do everything else while they waited for him, so we could leave right after the procedure.
At 12:00 pm the nurse came back to say that his blood sugar and oxygen was just a little bit off so they cancelled the circumcision for now and we might have to stay one more night just to make sure everything was fine. She said not to worry, it was normal. She could tell I was upset, so she told us to go hang out with him in the nursery to give me peace of mind. I started crying, not because for one second I thought anything was terribly wrong, but because I wanted to go home so bad! (Sigh…the little things that mattered before I became a “heart mom”….) I now think of those moments walking down the hall to the nursery as the last moments before our entire world changed.
It is hard to describe the way the next hours progressed and how they felt but it went something like this:
Nurse-”Oh, he is fine! We just need to warm him up and check his oxygen saturations and blood sugar one more time”
Me- “I know he’s fine! I am sorry I am crying so much, I think it is just my hormones”
“His sats are still not where they should be, I am just going to call the NICU nurse to come help out for a bit, no big deal!”
“We are just going to put a little oxygen on him and we need to put in a feeding tube to we can get his blood sugar up, then he will be ok”
….at this point I started noticing the “shifty-eyes” the nurses kept making at each other ….
“He’ s vomiting! Ok, let’s get the doctor in here…..Don’t worry the doctor is just going to check him out”
Doctor: He has a gallop in his heart, so we are just going to run some tests”
” We are just going to take him over to the NICU since he is on oxygen, it will be easier to be over there”
…I was confused, but it still never registered with me something was terribly wrong, probably because no one was saying their concerns flat-out…
“The x-ray shows no enlargement of his heart so we are just waiting for an echo”
….that’s good news right!?? Why is everyone still acting so worried? I really believed that at any moment we would have answers and that everything would be ok tomorrow….
And then it happened. The moment it all came crashing down. The moment all the “shifty-eyes” stopped and everyone stopped pretending. The moment we found out we were the 1 in 6,000
“Your son has the most serious heart defect possible called HypoPlastic Left Heart Syndrome, basically he only has one ventricle, we do not know what causes it, it is too complex for us to operate on here, you will need to choose a hospital for him to be airlifted to tonight, he will need a minimum of 3 open heart surgeries….” everything went black
I remember choosing UCLA and hearing that we had some time until they came to get him.
I remember walking back to my recovery room and one nurse whom I had never seen came out and gave me a huge hug.
I remember closing the door to my room and collapsing on the floor, while Joe tried to be strong and comfort me.
I remember the incredible ache I had to go see my other two babies.
We left for a couple hours to see our babies and wait for the call that the helicopter was on its way. My sister made french toast for everyone to eat and we tried to act normal for our kids sake. We took these pictures of Elinor showing us her handstand: This is my beautiful, amazing, thoughtful, sensitive daughter. She knew something was wrong, but she waited patiently until I had the strength to tell her. I sat her on my lap and explained that Bennet’s heart was broken and he was very sick. I told her that we were going to try to make it better but that he might have to go see Jesus in heaven. I told her he would be very, very happy to be with Jesus and that he would feel much better there. She asked me if Bennet could come back once his heart was better and I told her no. She almost started to cry, and then I saw it, she made a choice. She chose to be strong, not just that moment but for days and weeks to come my little 4 year old CHOSE to be strong. I never thought my baby would understand so much by this age but I knew in that moment that God was doing things in her life as much as He was in mine.
We got a call around 8 pm that they were getting ready to take Bennet to UCLA. We headed back to the hospital and waited by his side until they took him. One nurse asked me if I would like to change his diaper one last time and I was grateful to have one last “mommy” moment with by baby. We took these pictures from my phone right before the took him. They are terrible quality, but they represent a very specific moment and emotion:
We watched from a hospital window and the helicopter took off and we went home to our own house to sleep.
And so begins the rest of our lives….