Little Did I Know...

Hello after an almost full winter of no blogging. Its not because I had nothing to say - Lord, no! There was SO much to yammer on about but I was unsure as to how public I could be so I didn't write anything here. It seems now, though, that the situation is for the most part public so I finally feel comfortable chatting.

  Regarding the title of this post - My last post was Oct 29, just before we left for New Orleans. One month later to the day  my granddaughter was born in the Upper Peninsula of Michigan with catastrophic heart issues- the general diagnosis is Hypoplastic Left Heart Syndrome as well as Ebstein's Anomaly and a Coarcted Aorta. I believe there was a heart murmur in there as well. No problems had been found during the pregnancy so this all came as a huge shock. My granddaughter - named Aurora for the northern lights her parents love so much - was flown from Marquette to CS Mott at U of M Hospitals in Ann Arbor. My daughter and her husband drove the 4 hours from the U.P. to Charlevoix where the 3 of us took a chartered Cesna to Ann Arbor. We arrived at about 11 pm that night with Aurora getting in at about 1am. My son-in-law's family as well as members of mine all converged on the hospital and we spent a surreal night and morning in the family waiting room of the NICU ward on floor 10 of CS Mott Children's Hospital. ( this waiting room will be forever burned into my consciousness.) It was several hours before we were able to see Aurora and when we could it was devastating.  Over the next few days I would learn exactly how sick this baby was and the amazing people who kept her alive in order to stabilize her and give her a fighting chance.
   But when I wrote the last entry here all I could think of was how behind I was getting ready to leave for New Orleans and how grateful I was that my son didn't need an appendectomy. I had no idea how familiar I would become with navigating huge hospitals and how this last trip to New Orleans would be so difficult.
  So we left on time - headed down to Louisiana with no issues or hold-ups. We arrived and settled in but we were both uncomfortable and remained so. It was a different kind of year. For one, I was no longer working for a nola client having released that contract the month before due to severely dwindling orders. Secondly, both kids were on our minds- our son and his health and finances and our daughter with her pregnancy and finances. Our finances were becoming a concern as well due to their finances (parents: you know how this goes lol). Finally, Jack and I talked and agreed to leave a week early. We were antsy, uncomfortable, and running low on funds. We could've stayed but it would have pushed everything to the limit and that made us nervous. And thank the GODS we listened to these feelings! The day my daughter and son-in-law and I flew to Ann Arbor was actually the day that Jack and I were due to be home from New Orleans.
I will forever be grateful that my husband and I are believers in intuitive action.

Ronald McDonald Hospital - Ann Arbor,Mi

    So my family and I were suddenly thrown into a fairly exclusive club- that of the caretakers of a "Heart Baby" - we families of these babies become very well versed in non-verbal cues; are the nurses and doctors running when an alarm goes off? If not- we can't panic. If they are we hold our breath, step out of the way and start texting friends and family for prayers and candles.
  The Ronald McDonald House becomes a life-saver providing absolutely everything a family could need that has been dumped into the U of M complex with literally the clothes on their backs and nothing else. Food, linens, beds, clothing if necessary-- it's all there and available. If you are a donation-minded reader please add the Ronald McDonald Charities to your list. My family and I could not have made it through 3 months of surgeries without them.

  We members of this club learn what a 'tree' is and what all the medications hanging from it are doing for our baby. We learn what med is maxed out and we rejoice with the nurses every time one of those is brought down because each lowered dose means a larger bulwark against catastrophe should our baby need more of any medication.
   We learn what 'the bay' is and how to be supportive yet non-intrusive to other families with babies residing there.
  We learn that like Baby Ducklings many Heart Families become decidedly attached to one or two nurses so much so that when they are moved to another child's bedside we mourn and must learn to accept the next nurse.
  We learn that 'moving to the 11th floor' in the Pediatric wing is akin to Dorothy getting to the Emerald City - it's almost a myth because it's the last floor to successfully navigate before your child is released to go home.
  Then we discover the sadness and fright of being released; we have learned to love and trust the security guards, the nurses, techs, surgeons, and janitorial staff of this place. We have cocooned ourselves and our baby within this submarine where time is slippery and life moves along a secondary path to 'out there'.

   And then we are home with this baby that seems both terribly fragile and incredibly mighty to have survived open-heart surgery at only a few weeks old.
   We learn feeding tubes and how to administer 15 different medications that will keep her alive. We learn to measure oxygen levels and count calories and check weight gain. And we count down to the next surgery... Mostly we get to know this tiny yet mighty Being that has been sent here to us. It is humbling.
  And that is where we are now- Aurora has just completed her second open heart surgery at CS Mott in Ann Arbor; safe and once again cocooned within the walls of that place. We have once again been awed with the skill and dedication of its surgeons, doctors, and nurses; the good nature of the security guards and janitorial staff. Once again bearing right at the literal Fork in the hallway to head to the dining room and see what new knitted hat has been placed on Superman's head to ward off the chill in the front lobby.
 We have learned of friendship and generosity - the people at home who have gone above and beyond with financial and spiritual support. It is humbling. Aurora should be home again within the next two weeks with a corrected heart and minimal medications. We are all hoping to gather the friends and family who have been so supportive over to actually meet this child that they have all held in their thoughts and prayers all of these months. I cannot adequately express my thanks and gratitude.
 So little did I know a few months ago when I typed my last post...