The Human Hug

Jacob has been under NEC Watch since Thursday morning, and on Saturday night we were told that he has the symptoms of stage 2 NEC.  This is a potentially very serious condition, which has 4 stages of severity and is common in babies with single ventricle heart defects because of decreased blood flow to the body (his lungs are taking too much of the oxygenated blood).  Stage 2 is normally manageable by withholding food for 5-7 days, and broad spectrum antibiotics.  Stage 4, is only manageable with surgery on the bowel.  So, my poor son has not been fed orally since Saturday afternoon.  It's now Monday morning and I'm finding myself so tense that I grit my teeth and I don't notice it until I feel pain in my gums.  The evenings and nights are the worst for Jacob, he is more settled in the daytime but around suppertime he starts to get very agitated and upset and screams until he is the colour of an eggplant.  It's like a physical pain for me to not be able to feed him or console him - he cries until he wears himself out.  Last night he managed a four hour stretch of solid sleep - that was wonderful.  They are giving him an iv infusion of a nutritional supplement (TPN and Lipids), but his belly is still empty and he doesn't like it one bit.  Today Jacob needs another ultrasound on his bowel, bloodwork, and a PICC line inserted into his arm.  The PICC line is necessary because they find his veins are very small and hard to work with, and TPN is hard on veins so they want to avoid unnecessarily poking him every second day.    

We are still in parent care, thankfully.  Moving back to StepDown has been mentioned as an option if Jacob needs certain types of medication that require constant monitoring.  I'm praying that this doesn't happen because I need to be here to hold him when he is screaming and inconsolable.  This new setback is adding at least 2 weeks on to our stay here at SickKids - it's unbelievably frustrating when all we want to do is take him home to our daughter and family.

This past weekend was Mothers Day, and while it wasn't ideal Jon and I made the best of it.  On Saturday a volunteer came to our room and gave us t-shirts and told us about Meagan's Walk which was happening at that very moment.  3000 people had walked from Fort York to SickKids and were forming a human hug around the building to celebrate Mothers Day and support the Moms inside the building.  Here's what it looked like:

I didn't get to see this for myself, but I cried in Jacob's room because of the kindness that I felt being passed along by perfect strangers.  At lunchtime Swarovski was giving out gifts for Moms in the atrium, and on my way back to Jacob's room I was in the elevator with an elderly man and a woman.  I was wearing the Meagan's Walk t-shirt and flip flops on my feet, and the man looked at me and asked if I had walked the 5 KM in flip flops.  I told him that I hadn't walked at all, that my son was a patient upstairs.  We spoke for a few minutes and he told me that he was Meagan's grandfather, and he hoped that we would soon be home with Jacob.  When we parted ways I got a hug and a kiss on the cheek and Meagan's grandfather told me that the human hug was meant for Moms like me, and that's what was important.  It was a very sweet moment, and I won't be forgetting it anytime soon!  Sunday I got a beautiful video from my girl wishing me a happy mothers day, and blowing kisses.  It was the perfect start to the day.  Lots of cuddles with Jacob got me through the rest of the day, and Jon walked through rain and hail to bring me my favourite meal of nachos and guac for supper.  Thank you, hon! 

Rereading this post it sounds like all I do is cry - but the majority of the day and night are good.  They are filled with sweet baby cuddles, coos and smells.  Even when Jake screams in my arms, he eventually gets tired and snuggles in and sleeps for hours in mine or Jon's arms.  God is good - even in the middle of all of this, I can find His peace.  I question Him and feel hurt and angry at God almost every day, and I know I'll never understand this, but ultimately I can find my way back to knowing that He is in control and that Jacob is His child too.  So, heading into another day - day 40 of Jacob's life and day 40 at SickKids - God, please bless Jacob and heal his body so that we can bring him home where he belongs.