Tuesday, May 21, 2013

Good news!

In my last post I wrote that we were expecting a 2-4 week extension of our time at SickKids because of the NEC watch and getting back to regular feeds.  Jake has now been off of NEC watch since Saturday, has finished his antibiotics and restarted his feeds.  Jacob has some issues with acid reflux, with is very common for heart babies, so we are going to try a different medication for the reflux starting tomorrow.  The Occupational Therapist thinks that it is the reflux that is preventing Jacob from drinking more than 30 ml at at time.  Jacob has had no NG tube since Sunday, and has been having his milk from a bottle while supplementing with TPN and Lipids through his PICC line.  Tomorrow we are going to try breastfeeding again - and I'm hoping that will go well because there is so much fuss involved with pumping and bottles.  This morning during the rounds Jacob's cardiologist said that if he continues improving his feeds, and can gain a little weight over the rest of the week then they will try to schedule an air ambulance to bring us back to the Janeway on MONDAY! 6 days! Praise the Lord!!! Jacob may have to spend a day or two at the Janeway when we arrive home, but we don't know that for sure yet.  The timing of our flight home is also dependent on the single air ambulance that services the east coast, so it's hard to say that we will actually get home on the day Jacob is discharged.  I am so hopeful that we will be home next week.  Hallelujah! God is so good.  If we get home on Monday than our journey with Jacob will have lasted 9.5 weeks in total, including 54 days at SickKids.  That is long enough!  

We are now taking daily strolls out of the room and around the hospital.  Jacob loves to sleep in his stroller, and I love the freedom of getting outside the four walls of our room on 4D.  The picture above was taken on one of those walks, and I think he may be going to have red hair.  For those of you who are praying, please direct your prayers towards Jacob's feeding issues and weight gain.  If the feeding issues are not resolving in a few days his NG tube will go back in, and we will bring  him home with a combination of oral and NG feeding.  Home! Oh to be there right now.  Georgia is running around our cul du sac playing with her friends right at this moment.  She went back to her daycare today and was so excited and happy to go that she couldn't get ready quickly enough this morning.  Thank you Lord for bringing us through to this point.  Let's get this baby home and surround him with love and attention for a few months before it's time for his Glenn operation in the late summer-early fall.  Woo Hoo!

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