Two questions Jackson and I frequently ask, still don't understand and will probably never know the answer to. When I look at Jack's sweet face I would do anything to make his defect mine. Nothing could have ever prepared us for this, and trust me, we tried. This experience has not just been the battle of his heart, it is so much more.
The other families who are going through this all have their own ways of dealing. Some are negative and can find something wrong with everything. Some just avoid others, almost have a transparent appearance and won't even crack a smile. Then there are ones who want to talk and share their story, listen to yours and pray for you. Jackson and I fell into the last category and we met several others like us, one family in particular. When we were in the PCICU we were told we needed to meet the Smith family, they were a lot like us. That day finally came and we did have a lot of things in common. We would run into them and they always asked about Jack and we asked about their sweet baby Emerson. We were floor ready about the same time and I had expressed that I was dying to be with Jack and they offered me their place because the didn't mind staying a bit longer in the PCICU. Emerson was almost 3 months and had been to the 8th floor before. She had some complications and had to return. She was a hypoplastic left heart and I have to tell you the left is a beast.
When they saw us on the floor they were so happy for us. We talked about how much our babies slept, their progress and more. On Saturday Jackson had been out in the hall and came back in to tell me they were taking Emerson for a stroller ride and how cute she looked. That evening I walked out to get some ice water and heard her sweet father talking about how they chose her name. They just liked it was how I understood it.
Sunday morning when I woke our room door was open. It looked as though our nurse had left our room in a hurry because all her equipment was left behind. I laid there wondering if she was going to return, waited a bit, then got up to close the door. Shortly after some of our favorite nurses started to stop by and I could tell they had heavy hearts.
See this is what you can never be prepared for. Yes the surgery, the status of your baby changing everyday, the challenges of feeding, the constant worry you cannot prepare for but people tell you about those. They don't tell you about the relationships and loss. We were not prepared to hear that Emerson had passed that morning.
Jackson and I have had such a hard time with this. It made us ask those questions again. Why us- parents who are so loving, responsible- why do they have to go through this. Why them- why does an innocent baby have to hurt, battle for their life. It hurts more than I can describe and I cannot tell you how precious each breath and every heartbeat.
Emerson is an angel now. It brings me back to a story I read while I was pregnant.
It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that she is just going for a visit. She is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. She asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves." -Author Unknown
Emerson's heart is whole again.
Jack is doing well. He will probably have a minor surgery in the next week or so to put a G tube in his stomach. The feeding is very hard for these babies and it could take months before he can take the volume he needs. When he drinks from the bottle it exhausts him and he falls asleep. It was described to me as running a marathon. It takes a lot of training. The G tube will allow us to work on the feeding at home. Ahhh.... Home.
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