Friday, 4/25/08, 9:03 AM

Dear Ones,

Psalm 68: 19 Praise be to the Lord, to God our Savior, who daily bears our burdens.

Jace, now 36 days old, may be coming home from the hospital today. Although preparations were made rather quickly with hospice and equipment was delivered to the apartment yesterday, we will hear final word this morning. Jace has been stable for about 5 days now, and I had the pleasure of holding him for the first time on Wednesday afternoon!

He will need much care at home as he will be on oxygen and must be fed through his gastric tube; at the moment, milk must be administered every three hours around the clock and takes an hour to deliver the breast milk/formula/medicine mix. He is on still on medication for reflux and congestive heart failure as well as supplements and antibiotics. He spit up more yesterday, and due to the high possibility of aspiration has to be watched constantly. His still a little thing, barely back to his 4 lbs. 1 oz. birth weight. Lauren and Dan, when he is home from work, will be very, very busy, but, with an understandable amount of trepidation, they are excited at the possibility of being on home hospice care rather than intensive care at TCH.

Please continue to pray for Jace’s recovery from surgery and wisdom as Lauren and Dan continue to confront the challenges of raising their terminally ill little one. As you can imagine, each hour of each day is precious.

I do think meals for them would be appropriate, but Lauren thinks only 3 a week for a couple of weeks is necessary. (Um, I’m not so sure! I think they will be confronting a rather formidable task!) However, since they must be very careful about exposure to infection, I’m not sure how we are going to arrange delivery! For the immediate future, if you are interested in providing a meal, would you email me directly? I’ll try to organize a schedule for them. They don’t need much. Danny heartily eats anything and likes an occasional sweet thing, but Lauren is not a huge eater and shys away from meat preferring salads, soups, and veggies. I’m going to try to have a hearty soup and salad for them this evening, and I know they have at least two soups frozen in their freezer from generous friends who brought food the week Jace was born. I know after hospital food, Danny would love real meat and potatoes! I’ll be doing some last minute food shopping (I threw all perishables away weeks ago!), and now they need some baby things from Babies R Us. Lauren doesn’t even have a diaper bag or bath tub yet and preemie diapers are hard to find.

We pray God allows Jace to grace our lives for a bit longer, but Lauren and Dan are thankful for the hospice care they will receive. Bringing Jace home is a daunting task, but, with our Lord’s strength, Lauren and Dan are up to the challenge. They have been an incredible advocate for their little Trisomy 18 son already and have considered it a privilege to learn the machines that will improve their son’s care.

We appreciate you all so much. The battle continues for this weary young family, but they wanted me to thank you all so very much for the many, many prayers, the generous hearts, and the love they’ve felt even isolated in the hospital. They wish they could see you all to thank you personally and show off their son, but right now they need some peace and quiet to get adjusted. We have promised to ‘leave them alone’ (as much as possible!), so they can settle into some routine.

I’ll try to update you as I have more information, but for now, please know that you guys have been a integral part of Jace’s stabilization and the strength Lauren and Dan feel. Thank you.

Resting in the grace of God,
Kathy for the Harts and Steinhauses