The last few days still so fresh in our minds, as if they were a continuing circle, no day or night, just one long nightmarish day. Little did we know there was even more to come.
A few days before our lil one was taken from the NICU and placed into the PICU to settle in and get ready for surgery the next day, my husband called giving me the report that he was stable and successfully moved and settled in and that our sons nurse seemed so nice. We planned to get back there within the hour to see him and meet his new nurses and maybe, just maybe get to hold our beautiful/frail baby for the first time.
Entering the PICU seemed so different, yet familiar, we didnt know at the time that we would spend 3 months here on our CHD rollercoaster.
There he was all tucked in his incubator bed, with his machines and jewlery made up of wires. Extubated with a nasal cannula on in hopes that it would help after surgery to come off the ventilator quicker. His beautiful fat cheeks and perfect little chest. A wonderful nurse soon walked in telling us she got it approved for us to hold our little one since he would be going off for his first open heart surgery the next day. The joy that ran through me is undescribable. I would finally get to have my new baby in my arms.
They brought in a comfortable chair and pillows to help prop him up. My sister got to be there for the memorable moment and to take pictures. Joyful, we sat patiently waiting for him to be place in my arms. But something began happening, his machines began to beep, I seen his oxygen dip low and a slew of nurses,doctors and respiratory therapists came in. Rubbing his feet, sternum and head, shaking his leg and then bagging him pressing gusts of air into his lungs to trigger him to breath. We sat in awe that we were going through this. My husband and I grabbed eachothers hands, we didnt know what was going to happen, and honestly we were just waiting to hear that we needed to leave the room. Was this it, were we going to lose our baby before he even had a chance to fight, to show us what he was made of and everyone else in the world. Were we going to witness our child pass right in front of our eyes. With a critically ill child your mind often goes to these questions and you ask yourself what you would do, how you would react, when will it happen and which would you rather it be (not at all that you ever want it to happen). Would you rather them pass in your arms peacefully or when you stepped out for a bite to eat and you dont have to witness anything.
I watched his machines steadily go into the range he needed to be at, he had began breathing on his own and we too began breathing again. Not today, we told ourselves.
My husband was hesitant to hold him after the drama that just unfolded in front of us, afraid that something would happen again and that maybe he was to frail for us to hold right now. But the nurse and I reassured him that they would be right there if something happend and that we needed to hold him and bond with him in case something happend the following day during surgery, and because we didnt know how long it would be before we held him again after surgery.
Placed in my arms the universe finally felt right, I felt complete. And he was content, it was the best we had seen him sleep since he was born.
I would have to tear myself away to go home, I didnt want to, but I had to. We needed sleep and we needed to see our other two kids. The next day was surgery day, or so we thought until we came back to the PICU and were told that he had "buggies" in his breathing tube and it could lead to infection so they started him on a round of antibiotics for the day and would hope for the next day. Hesitant if this was okay or not, we felt scared and relieved at the same time.
On 9/20/2012 we arrived for the day awaiting if it would be "the day". Meeting with surgeons we were told it was a go and he would be sent down to the OR within the hour. We made quick phone calls to family who was coming to wait it out with us and just enjoyed our time with him before we handed him over.
It was time and numerous people came in to take him away, and we were told we could follow so far. I stayed close by his bed watching his lil chest rise and fall and he looked peaceful, poor thing didnt know what was about to happen to him. A last good bye kiss was granted, but I was to short to reach over his lil bed so I kissed to fingers and touched his warm little head, telling him "I love you, be strong, mommy and daddy need you here lil man" something I had requested of him all morning. Stepping back on the elevator with my husband we hugged and wished to ourselves that we would see our baby alive again.
Waiting room filled with our family and we sat in the middle awaiting our hourly update. "He's under, and stable", "His body is cooled and they will begin the first cut within the next 20 minutes","Hes on bypass and the repair has begun, hes good so far and they are finishing his aortic arch reconstruction". All the while images danced in my head and thoughts of how my baby was the one I was getting these updates on, my baby was cooled, cut open, chest cracked open and they were cutting his tiny heart and reconstructing it to help him survive. I knew the images well, I studied the heart often while in school and even more so with his diognosis, including watching a youtube video of a norwood procedure being done. An hour went by and we heard nothing, another 30 minutes and I began getting a little scared. Most of our family had already began heading home so there were only a few of us left waiting when I recieved a call from the nurse saying that all was fine they just got caught up and didnt get to call. Talk about a heart attack and sigh of relief. But then it happend again, and longer this time. By this time my in laws were the only ones left and my husband walked outside for a moment when the nurse practitioner came to tell me that he did well through surgery but they couldnt control the bleeding and his heart was very weak so he had to be place on heart lung bypass machine or ecmo. I knew what this meant, and asked frankly that he was now on life support. My world crashed when she answered what I already knew, and there I stood alone with this news. I had to explain to my husband, and it was just hard to muster to words out of my dry throat. I wanted to cry, wanted to scream but I felt I had to hold my composure and he wasnt dead yet, there was still hope to have.
Surgeons finally came to give us a run through of what happend, but by this time my shirt was soaked with my own fluids. I had been pumping for my lil man since I had him but was to afraid to pull myself from that waiting room for fear of missing an update or a chance to see my dying child if something happend. So I sat for 12 hours waiting and now hurting and cold!
By the time we got to go back to see him we were told that he would be puffy, which we imagined from the other parents we had talked to, but we were'nt prepared for what we would see. Gowned up in our fancy plastic blue gowns and gloves we walked into a room with a machine we didn't expect and new people we hadn't met. But the sight of our son was the hardest to deal with. I have seen many things in my life but had never seen this, and for it to be our own child it just took our breath away and broke our own hearts in two. We weren't prepared for this, we hadn't been given the statistics of this happening or the imagery of what it would look like, and even if we had I don't think it could have saved our hearts.
My husband leaned over to tell me how hard this was for him and that he felt faint, and it took everything I had to keep from falling down on that hospital floor. We didn't stay long because he needed rest and less risk of infection with people in and out.
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| This was a few days post op, he was off ecmo but still not stable enough for chest closure |
We walked into our room across the hall reserved for us that evening for the most severe kids there (how lucky we were right?). I made it two steps in the door after shutting it and I couldn't hold it anymore. I had been so strong through everything, I had my bouts of crying during the day and any parent in our situation would but nothing like this. I couldn't hold it in anymore and rightfully it was my time to break down. That machine was the only thing keeping our son stable enough to sustain life at the moment and the realization that we could very well lose him hit us like a ton of bricks. There would be no machine to help us go on and be stable if that happened and that was horrifying.
Today I look at this newly 1 year old laughing and smiling at his big brother playing peek-a-boy behind the window shades and I sometimes cant believe all that we have been through and how this once so fragile baby is sitting here so full of life and so unbelievably happy to be with his family, he doesn't know just how happy he makes us, and how complete we are with him here. He no longer has machines breathing for him, his chest rises and falls on its own with out mechanical support and so does his heart, beating to the sound of a washing machine all without those ecmo cannulas sticking into him pumping his blood through his body.His chest may no longer be "perfect" to those around us, but to us its a testimony of his strength and how he fought with every fiber of his being, even when he was so small.
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