Sunday, September 22, 2013


I think we were all on auto-pilot this week. To say it was exhausting would be an understatement! So, this will be a picture-heavy post because I don't have the energy to write about it. But, just to recap, Ezra hasn't grown in length and has been in the 11-pound range since JULY. In fact, before the surgery Wednesday, he still hadn't broken 12 lbs. (It is mainly the massive size of his spleen crowding his stomach that makes it impossible for Ezra to hold down very much at a time, so he can only breastfeed very small amounts without vomiting). After much feet-dragging, soul-searching, and doctor-urging (and lots of frustrations actually scheduling the surgery), Ezra finally had a G-tube surgically placed at Sacred Heart in Springfield on Wednesday. The idea is that he will be on a drip feed throughout the night to try to get him some more calories at a very slow rate. The tube will also help us administer Ezra's chemo meds.

Before surgery. Poor little guy had to go 12+ hours without eating (6 before surgery, 6 after).

Making this gown and bracelets look so handsome. Loved that it had a "Noah's Ark" theme to remind us that there is still a rainbow in store for Ezra :)

Sacred Heart is so high-tech! Thankful to have this reader board that told us what stages Ezra was at throughout the whole process as we waited anxiously. (Just like the reader board at an airport, only not quite as fun!)

After surgery, still pretty heavily sedated.

We had the most beautiful view from our hospital room...made the stay just a little more pleasant. (McKenzie River)

Lots of drugs made for a very sleepy Ezra.

This is what a G-tube looks like post surgery (it required two other incisions, one of them through the belly button).

Day 3 - so ready to go home!

Big brother hanging out in the hospital room window sill.

The little bear they put in Ezra's crib post-surgery, with a band-aid appropriately placed on the belly.
The week started out at Sacred Heart with a very unpleasant time at the lab, but the rest of the experience couldn't have been any better (except if we weren't there at all, of course ;) ). Our surgeon was amazing as were all the nurses who cared for Ezra. So very thankful to those in the medical field, for the crazy hours they work and the way they teach us to take care of our sick little ones! And so very thankful to all of you for praying for Ezra and our family this week. Please keep praying for little E and the rest of us as we adjust to this new world of feeding tubes and a house full of medical equipment.

PS - We are so thankful to our families for caring for Judah while we are away caring for Ezra...Josh's parents when we are up at Doernbecher's, and my parents and sister when we are closer to home. Being away from Judah is excruciatingly painful, and having him nearby wherever we are makes this trial just a tiny bit easier.

PPS - A special thank you to Josh's co-worker, Amber, who has set-up a bake sale each Friday at work to benefit our family. Thank you, Amber!

No comments: