Thurs. January 31st.

We've had an amazing last few days. We just keep staring at Luke and soaking him up under our own roof. Except today, we checked into the Residence Inn while our floors are finished in our home. I told Bryan it's a family adventure vacation, he liked the word "adventure". Luke is adjusting to home and we're adjusting to him. He sleeps pretty good which is helpful, he makes a lot of grunting and snorting sounds in his sleep.
He had his first doctors appt. with his regular pedatrician today and he's off to a good start, he has gained .5oz and weighs 13lbs 8oz. She's pleased with his great social skills. We'll keep working on improving his muscle tone. He needs some six pack abs, which we have a list of exercises from his physical therapist at Emanuel that we can do with him to help.
We can't believe today we're wraping up January, what a month it has been, a stressful month that has lead to great joy. We dreamt of the moment we would take Luke home and when it arrived, we were speechless. For me as his mom, walking out of that NICU door flooded me with emotion. The great staff at Emanuel made Luke and our family feel at home, as we were treated with such great respect and care, but at that moment I thought we don't have to share our baby with Emanuel anymore, he really is ours to take home. As a close friend of mine sent me a message this week seeing that Luke came home, she said "congratulations, it's a boy!". How right and perfect to say, as we really feel like we're starting out the beginging, the begining of having our littlest boy home.
Thank you all for your prayers and support, you are carrying us through as our journey continues on with Luke.
Melinda

Jan. 28th ****He's Home!!!!*****

Today Luke came home at 2:30pm and asleep by 3pm.

Many tears of joy from all!!!!!!!!!!!!!!!!!!!!!!!!

Friday Jan. 25th/No Air and Home Soon!!!

We have really good news to report. First Luke was weaned down to the lowest on his Nasal Cannula yesterday and did well and then last night pulled it up on his forehead, the nurse let him be, since he was doing fine without it and he hasn't had it on since. It was wonderful seeing him today without his clear tube running across his face. He's has such a cute face, it's wonderful to see the whole thing uninterrupted!!
Second is the next piece of wonderful news. Yesterday the doctors said Luke could come home in about a week, today they said Monday or Tuesday. Yes, you read it correctly, after this weekend, he'll be home!!! Plus home without needing any extra oxygen support. Hard to believe and super amazing to us. We are very THRILLED, we can't believe in a few days, we'll have him to ourselves. Of course there will be several follow-up appt's, but that is nothing compared to having to share him with Emanuel for the last 6 months (can't believe Monday is 6 months!!).
We also heard one of his NNP's today use the word miracle discussing his remarkable progress. We are very proud of our Luke and we've known that he's a miracle, but to hear his professionals caring for him use the word means they see what we see in him.
This weekend we're working on a lot of prep work at home and at the hospital to work on getting everything prepared for him to be home. I will be staying the night in Luke's room tomorrow night to help prepare myself for what a night is like with him, but from what I hear he wakes up once in the night, so I am betting he'll sleep better than I will.
Needless to say, we are just very happy and thrilled about his progress.
We are very thankful for all your prayers and support.
Melinda

Wed. January 23rd/Passing tests

Luke passed his hearing test today. He didn't need the larger screening test after all, which is great news.
They lowered his air pressure down a notch today, the start of the weaning down on his Nasal Cannula. This will continue over the next several days to see how far down he'll go.
He's having his 2nd round of immunizations this week and is finally off the stronger diuretics and is just on the lighter one's.
He's doing really well and has just been more and more active and just wants more things to do, so coming home soon is a good idea to us and him!! It's amazing to say those words out loud, "coming home".
Thank you for all your prayers and support.
Melinda

Tues. January 22/No More Leads

Today Luke had his chest leads removed (yippee!). After seeing him with these wires stuck to his chest for almost 6 months, it was a pleasure to remove them for good. He still has his Pulsox to keep track of his oxygen saturation levels for now, but before too long that will go away too.
His in depth hearing test was postponed to Thursday, we'll keep you posted once he has it. He is just doing and looking so great! It is very refreshing and Jeremy and I couldn't be happier to see this great change in him.
Melinda

Mon. Jan. 21st No More Nitric

Luke is officially off his Nitric Oxide and doing fine without it. He had another follow-up Eco and his pressures are down into the 30's, which the 20's are normal range, so as you can imagine we're amazed again by this little guy and the progress he's making. Not only are we amazed, but his doctors and nurses are too. His Eco revealed something his cardiologist team hadn't noticed before, which is a few small veins linked out from one of his main arteries, these veins are adding more blood to his lungs. It's not concerning right now, but possibly another Cardiac Catheter procedure to fix these, possibly before our next flu season to give his lungs a better fighting chance in case he gets a cold. Right now it will be something we'll be keeping an eye on. Still just great news with the dramatic drop in his pressures.

Here are his latest statistics:

12lbs 8.57oz
22.8 long

We still are feeling very relieved with how well Luke is doing. Starting today we're having are old carpet replaced with wood flooring, this will help Luke having less allergens. A big project, but well worth it.

Melinda

New View/Friday Jan. 18th

Today Luke moved into a room with a window, it's the room he was in last month for a few days. It's wonderful to have natural light in his room. He continues to do very well. Dropping the NO2 down is working okay. We're hoping he'll be off of it by Sunday and will have a repeat Eco on Monday. He'll have an in depth hearing screen on Tuesday. He never could have the basic hearing test they have because his nasal cannula or Luke would make too much noise for the test. They are also reducing his diuretics slowly and so far he's tolerating the change well. Just slowly reducing things to make it easier for him to go home. He's growing rapidly out of his 0-3 month clothes and is headed into his 3-6 month clothes. It's nice to see him grow length wise so well too.
Jeremy and I are attending a marriage retreat tomorrow. We didn't think we would make it, but with Luke doing so well, it's good timing for us to break away for a day and focus on us. It will be a great refreshing day for us.
Melinda