Our last day as interstage parents- Glenn on 3/29
Interstage among infants with Hypopalstic Left Heart Syndrome is the most tenuous and stressful period of this journey. I suppose it is fitting that in the very start of this marathon, folks are met with an enormous hill to climb. A lot of kids don’t make it. In fact, most of the kids who don’t make it get their angle wings during this period. Today marks the last day for Dan and I as interstage parents and about 36 hours are left for Paul in his classification as an interstage baby. Tomorrow we go to clinic and Thursday at 8am we will give our little one to God and the brilliant and humble Dr. Bichell to perform the bi-directional Glenn procedure.
The days when you go to clinic don’t really count as being days as an interstage parent. I relish in clinic visits, the only day of the week when I get to parade our precious little boy around, showing the doctors and staff who are saving his life the fruits of their labor. On clinic days we get reassurance, people are checking him out, some days they even decide to keep him. He is Vanderbilt’s baby on those days- not ours.
So, I am counting today as our last day as interstage parents and I will, with a bit of reservation, say we did it. He did it. We all did it together and if you are reading this, you probably helped. We got through it- the calling for a little “duskiness”, the living in isolation, the medicine, the feeding pump, the home monitors, the constant checking of weight, saturations, diapers and temperament. We got through it- with laughter and love, snuggles and singing. We watched as Paul started holding things and began to trackus with his eyes. We drank wine and played board games every weekend with friends who put their lives on hold to be with us. We ate food that folks brought over and did a lot of skyping for work and with family. We watched about 100 netflix movies and countless hours of lifetime TV and Sponge Bob. We read to Paul, dressed him in precious little clothes, and still found time to go on dates, get haircuts and pedicures, keep a clean house and do our jobs. We must have made about 50 calls to cardiology- we got help from various fellows (especially Flak, Israel, and Moladeaux) and our perfect nurse, Karen- thank you! We changed the feeding tube approximately 12 times and had 2 rather unnecessary ER visits and 2 sort of necessary extra hospital stays with our friends on 6C. We must have cleaned up spit up 500 times and visited with our Pediatrician very early in the morning for shots on 2 separate occasions. We did it- we lived in a new normal that was a lot like a whole lot of heaven and bits and pieces of hell.
We did it and somehow the end of this phase feels nothing like an end but like a new beginning. We still have so many miles to go, but it seems like these miles might be on flat road with less ups and downs. The Glenn is open heart surgery- plain and simple. It is risky, there can be complications, and it’s dangerous we are scared and will probably have a whole new set of struggles with this surgery and recovery but today- right now- I just have to relish in the fact that (I’ll say it again) today marks the last day for Dan and I as interstage parents and about 36 hours are left for Paul in his classification as an interstage baby.
This Thursday we ask for your prayers. Please, Lord, let him get through this. Please give us more time with this precious little one. Please Lord, guide the staff, guide us, and keep Paul safe and sound. It is through you that we are here, through your grace that we live and through your will and because of you- we did it.
Paul, almost four months and 12 pounds, 12 ounces and smiles like he has two ventricles!