Zoe Grace: Hope for a better tomorrow

Even though I want to get to bed early since 4am will be here all too soon (plus I need to get up at 1am to switch out Zoe's feed from formula to Pedialyte), I will not be able to sleep without blogging today's events.

Zoe and I headed to the hospital to meet with her surgeon Dr. Iguidbashian (aka Dr. John) and do all of her pre-op testing.  I wasn't sure how I was going to feel today but after speaking with Dr. John, I am feeling very positive and at peace with this next stage.  As opposed to the preference of our cardiologist, Dr. John is most comfortable doing the Glenn at 4 months, rather than 6 months.  He explained that by 4 months of age, most babies have grown out of their shunt that was placed in her first surgery and the significant decline that we are seeing in her condition is probably a result of that growth.  He also eased a lot of my concern when he said that this procedure will minimize the leakage from the common valve, if not repair it completely.  He was not overly worried about the condition of her common valve and said he has seen much worse.  If they do see that it has worsened significantly during the pre-op echo tomorrow, they might consider a valve repair, where they would add sutures to the leaking site.  Dr. John didn't feel that this would be an issue, but wanted to let me know it would be an option.  My favorite part of our visit was when he told me that the death rate of her first surgery was 10 times greater than the rate of the Bidirectional Glenn.  We made it through that, so this next one will be a breeze!  This procedure is shorter in length and much simpler as they will disconnect the shunt and redirect the SVC to the pulmonary artery.  This will allow her single ventricle to function more naturally and less blood will mix.

After our appointment, we met with our pre-admitting nurse Rebecca for a weight check and to go over tonight's meds and feeding schedule.  She informed me that we actually need to check in at 5:30am instead of 6am... yay?  We then went down to Diagnostics for a chest x-ray, EKG and labs.  The first two tests were quick and flawless, but the labs were painful... as usual.  It took 7 pokes and two IV Team nurses to get only 2.5 MLS out of little Miss Zoe.  That still wasn't enough, but no one wanted to put her through anymore, so they said they would get more blood tomorrow when they start her IV's.  The poor thing was so exhausted.  She has been passed out in her crib ever since we got home.  At least that gave me some time to spend with Lulu before the chaos begins.  She helped me pack her suitcase, we had dinner, watched a movie, played with her doll house and even spent some time out on her tire swing.  Gma and Gpa Milne came by at 7:30pm to pick her up.  Before she left, she wanted to say goodbye to Zoe.  We quietly went into Zoe's room, she gave her little sister a kiss and said "Bye Zoe!  Get better!"  I love that girl.  She prays all by herself now, and always says "Please help Zoe's heart to be healthy and strong."  It melts my heart every time.

Somehow... some way, I am eager and excited for tomorrow to come.  I truly feel that my prayers are being answered, because watching my baby struggle the way she has these past few weeks has been heartbreaking.  She has been working so hard to just get by and as a mother, I want so much more for her.  I want Zoe to know more than just pain and survival.  I want her to know the sweetness of life and to feel that joy that every baby is entitled to.  This next surgery is our ticket of hope.  Hope for moving forward.  Hope for potential and progress.  Hope for a future.

{taken yesterday while I was folding laundry.  I was so grateful to have a simple day at home with my two favorite girls, doing housework.  Who knew laundry could ever be a tender mercy.}

1 comment:

The Leiths said...

hope all goes well tomorrow! you have such a positive outlook. I can't wait to hear how things went. love you guys! praying for little zoe and the doctors!