Meet Bennett, our 7 month old son, and the baby brother to our 3 daughters.

Bennett was born on May 19 with Trisomy 21 (Down Syndrome), and a Congenital Heart Defect (AVSD and Tetralogy of Fallot ) - he spent the first 4 weeks and 1 day of life in the NICU and PICU, and had several visits (some weeks at a time) leading up to his most recent visit which started October 12.

He went in for low oxygen saturations which turned into an emergency open heart surgery on October 15 (originally scheduled for the end of November). We were excited that with the moved up procedure , we had a good chance we’d be home by Thanksgiving. He came back from the OR on ECMO (bypass machine), and his kidneys took a major hit.

He started dialysis, and we were hopeful that his kidneys would recover (they’ve yet to recover). 5 weeks after his open heart surgery, the decision was made to take him down for a test to check his pressures (a procedure that was held off as it required contrast which doesn’t do injured kidneys any favors), and we discovered that a small residual VSD (this was a known - there was a patch leak from his surgery) was causing shunting from left to right at a ratio of 2:1 (1:1 is normal). Essentially, his lungs were getting twice the blood they needed, and the rest of his organs were getting 1/2.

On November 26, 6 weeks after his first open-heart surgery, they took him down for another. We were optimistic that things what his kidneys needed to recover, and we’d all be home by Christmas. 2 weeks later, he was extubated (he’d been on a respirator since his first procedure), we’d changed forms of dialysis several weeks prior (getting lines out of his neck, and a PD catheter in his stomach).

His PD catheter started leaking from the site where the tube entered his stomach, bad went to worse when the drainage started turning pink, and worse went to horrible when we had to go back to the old form of dialysis, and put lines back in his neck for that. The day after that, he had to be re-intubated and the chest tubes (drain lines that had been in since his second surgery) more than doubled in the output. We learned about Chylothorax - and we learned there’s not a lot that was able to be done to fix this at the hospital we’d now been in for 10 weeks on a visit that started because his oxygen was low.

In December 22, at 8:05pm, he was on a helicopter being transported from a hospital 20 minutes away from home to Lurie’s in Chicago - 3 hours away. The previous 10 weeks were impossible, but we managed. I somehow managed to keep working (my boss has been incredible and has allowed me to do a TON remotely), but it’s getting more challenging.

Bills are paid, but funds are tight. We’ve been blessed with family and friends offering meals, but there’s been an excessive amount of eating out and extra expenses. And January 1, deductibles start over (which we’re still paying our portion of that we hit in February of this year). We’re a single-income family as my wife works harder than I do at home with our children. Any donations will go towards medical bills, housing, food and travel to and from Chicago during his stay.

If you know me, I’m not one to ask for help, but I’m learning to ask and appreciate help from anyone who’s willing. We appreciate anything anyone is able to do to help.

Thank you!