Today started out with an email from a Heart Mom friend I met at Sick Kids when Jake was first born, saying she had checked my blog and there were no new updates...so she emailed me instead :) I found myself typing my response to her beginning with the line - "You know what? For the first time since Jake's birth our life is normal. Really normal. I can take him places, feed him without getting stared at, he's healthy and happy and I'm not constantly afraid."
And that's the truth. Since getting the G Tube, and coming out of isolation I feel like Jake and our family have turned a corner. I used to be constantly afraid and anxious - living with the What If scenarios running through my head all the time. That's no longer the norm. I still have those moments, or even days, but they are less and less. I have so often had people tell me how strong and brave I am since this journey with Jake began, but truly the strength and braveness did not come overnight - they were a work in progress since that day that I lay crying on the table during the ultrasound while a room full of people passed scary medical terminology back and forth and tried to puzzle out what they were seeing inside my 21 week old unborn baby. My faith has been a work in progress since that day as well - and the foundation has held secure for us - God is good.
Since leaving Sick Kids and coming home at the end of February so much has happened - Jake's 2nd birthday! His second Heartiversary! His first time in the snow or on a slide! His first skinned out knee! Awesome and amazing.
Have a look...
We are adjusting well to life with a G Tube instead of a NG. I love seeing Jake's whole face, and he loves his newfound freedom as most feeds are done through his backpack pump while he plays. Here, sister put on a burn net too so Jake wouldn't feel different - she did this all on her own. Heart melted.
Jake's first time in the snow...we went to Bowring Park!
Jake turned 2. My mind always drifts back to being told that my baby likely wouldn't survive to be born - and now he is TWO! Here he is with his birthday cake the day before the big party!
Playing outside and his first knee scrape :)
Georgia is also thriving. She is doing really well in Kindergarten, and loves her teacher. Today was the Scholastic book fair and I went with her and we chose books together - it was awesome. Georgia has also started coming to many of Jake's appointments with us, since school is only a half day. The shot below was a day we had two appointments and some time in between - so we went to Boston Pizza for lunch, and Jake was having his nap on the seat next to my legs. Wonderful, lovely moments that I never want to forget.
That is not to say that life is perfect, life is never perfect. But I'm so filled with thankfulness every single day. Jake has been having issues with weight gain - he lost over a pound during the period leading up to and after the G Tube surgery, and he has been struggling to gain it back. He's dropped to the 2nd or 3rd percentile on the growth chart, and because of that needs to see the dietitian every week, he keeps resisting weight gain and refuses to hit the 22 pound mark. We are in the process of changing his formula a little - hoping an extra hundred calories or so each day will help him gain. But, the good side of this has been Jake's eating - he is constantly eating! Precious jaws. He absolutely loves chocolate, and our Easter stash is quickly dwindling because of that! He really needs to gain weight, the optimal weight for his upcoming open heart surgery is 35 pounds. 35 pounds! And he's been 22 pounds or less for the last 10 months. I don't see him gaining 13 pounds in the next six months without a miracle. So please pray, please continue to pray - for weight gain and strength for Jake.
If you could also whisper a prayer for two Heart Warriors who are struggling right now at Sick Kids - Gabriel and Gideon, both of whom received a prayer shawl from St. John's Temple on our last trip to Toronto. God knows their stories, and he feels the pain of their parents. Asking for a miracle for both of them.