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

Wed. Jan. 16th

Luke continues to recover well. He has his IV out now. He had a repeat Ecocardiogram today and his pressures were around in the 60's, which in the 20's is normal, but they are not sky rocketing up, which is good. His cardiologist is pleased. They will keep dropping the NO2 down until he's off it and repeat the Eco again. This will happen next week. They are also working on lowering his diuretics too. They did a repeat x-ray today and although his lungs still look very cloudy, he has better extension in them, which means he can breath deeper. Everything is headed in the right direction and the "home" word is being tossed around. Hopefully by mid next month he'll come home. It's an amazing word to hear! It has seemed so far off in the distance, to hear it could be next month is an incredible feeling. His NNP Tara started working on a checklist for "home". Not wanting something small to stop our littlest man from coming home.
Tonight Jeremy and I were with him and the harpist visited him. Jeremy topping him off with a bottle after I nursed him and I was gazing out his window from his room listening to the beautiful music. I saw Luke's nurse working on a baby outside his door, she lifted his head and I could see it was super tiny and then his arm raised up and it looked so thin and frail. It brought tears to my eyes, as that baby was about the size of Luke when he was born. I looked over at Luke and all I could think of was "thank you Lord".
Jeremy and I visited the adoration chapel tonight for some much needed prayers in Thanksgiving.
Melinda

Cardiac Catheter Update/Prayers Answered

Luke's procedure went very well!!! Prayers answered!!! A huge sigh of relief!!! Thank you, thank you, thank you, for all your prayers!!!!
Jeremy and I can't thank the Lord enough. We said a Rosary in Thanksgiving with Luke afterwards in his room. It was extremely difficult walking him down to the room holding him in my arms and handing him off to the nurse in charge. Soon we heard good news that the doctors were able to get in easily and then we heard they put the device (a 9mm metal 2 sided mushroom top type of device) in smoothly and right away his pressures dropped from being in the 60's to the 40's (20's are the normal range), which was much better. They were concerned that his CO2 level became elevated and thought he'd stay on the ventilator for possibly an extra day, but his CO2 level dropped back down and he was ticked off having that tube in his throat, so they took it out and he's been fine. He was a little hoarse, but was able to nurse this afternoon and should have his IV out tomorrow. He's required no extra O2 and has been very stable. By this evening he was smiling and coo'ing again (music to our ears).
All of Luke's doctors and nurses are just amazed at how well he did. One NNP today said that she credits all the prayers going out for him. We got many hugs from the staff today.
Jeremy and I are breathing a HUGE sigh of relief, we both had been so stressed and concerned over this, now it's time to work on getting this guy home. Which they are dropping his NO2 (Nitric Oxide) tonight a bit and then will recheck with an Ecocardiogram tomorrow. If it looks good, then they will keep dropping the NO2 until he's off of it and that is the ticket home.
Jeremy and I would like to thank our sponsors for getting Luke and us through this day, first and most importantly is our Lord holding Luke's hand and ensuring everything would be okay. For each of you with your tremendous outpouring of prayers and support. We also want to thank the wonderful medical staff for caring for Luke as if he was their own.
Jeremy and I are beyond words. We can see that Luke is a miracle and what happened today was evidence of that divineness.
Now it's time for some rest as we haven't rested well in awhile. As Luke sleeps tonight, so will we.
Melinda

Surgery Tuesday!!!

After much prayer and consideration Jeremy and I made the decision this weekend to go ahead with the cardiac catheter and/or open heart surgery as needed. We feel that sooner is better than later. We were surprised to hear that tomorrow Tuesday will be the day. We pray that the cardiac catheter procedure works well. We'll keep you posted with how everything goes.
We also want you to know that we took another stroller walk yesterday around the NICU this time big brother Bryan was able to be there too. We all took the walk, it was more like a parade. Luke was awake this time and was looking all around. It was a lot of fun for all.
He is growing more and more, about 12lbs. 11oz and another cm in length. He's doing what he should be doing which is nice to see.
We appreciate all your prayers and support through this.
Melinda

Fri. Jan. 11th Another Conference/Stroller Outing

We hope you enjoy the pictures. The first picture is his normal smiley self. He loves flashing us a cute smile a lot now. He's getting pretty wiggly too. He sits up better with assistance and looks around a lot and reaches with his hands and kicks his feet. He's just getting busier and busier every day.
The next pictures are of an outing we took around the NICU. One of his primary nurses "Barb", started discussing how Luke could get to take a stroll earlier this week and with much planning, today was the big day. Luke in our stroller, along with daddy taking pictures and pushing the portable monitor, along with nurse Christi pushing his O2 tank and the respiratory therapist pushing his nitric tank we made a parade walk around the unit. Luke at first was fussy being tired and eventually fell asleep (just what his big brother did in the stroller). I think Jeremy and I had more fun than he did, it was just great having him out of his room, even if it was for 15 minutes.

We've been talking to Luke's specialist this week and today had a conference going over every angle of his Pulmonary Hypertension (PPHN) and lung disease. We also got to talk to the heart surgeon and the Cardiac Catheter specialist. It really helped answer all our questions and get a clearer picture of why this is needed right now. One thing that helped me was to learn how PPHN is a silent disease. The baby (or adult too) can look perfectly normal on the outside, but have this awful life threatening problem brewing on the inside. If we wait for Luke's condition to deteriorate before acting on this procedure, the effects of his PPHN would most likely be irreversible. His prognosis wouldn't be good. By doing this procedure now, when he's strong, he would have a better chance of overcoming his lung disease that is causing his PPHN and he'll recover more easily from the procedure. Still tough since if the Cardiac Catheter doesn't work, then they will have surgeons standing by to do open heart surgery. The open heart surgery for this condition (closing that little hole) is one of the oldest and standard heart surgeries they do on babies. Luke would recover in the PICU, a unit upstairs especially for babies recovering from this type of surgery. It would be about one week before he could return to his room in the NICU. It is a much slower recovery than the Cardiac Catheter procedure, so we just pray that he won't have to have the open heart surgery.

It's been a tough day, but good too with getting all our questions answered and topping it off with the stroller ride. Luke is truly an amazing baby. He has such a hefty illness, but is such a happy and social baby.

We appreciate all your prayers, they really are guiding us through this tough journey with Luke.

Melinda

Mon. Jan. 7th

Luke continues to do well. He's quite a champ through all this. He is nursing well and has actually taken a few full feeds via nursing, everyone is amazed at how well he's doing. He now watches me leave his room (even harder to leave now). This week we are going to have another conference to discuss the Cardiac Catheter procedure. We know Luke should have this done to get a real picture of what his heart looks like on the inside and to close the little hole in his heart, but it's all about when is the right time. Which we can see, now that he's getting bigger, it may be a good time to go in. Once the doctors can get an up close look, it will give the clearer picture they need in case there are different medicines that need to be used for Luke.
I mentioned he's getting bigger...here are his latest numbers:
12lbs 3.3oz
22 1/2" long
Thank you for those prayers that are carrying all of us through!
Melinda

Wed. Jan. 2nd Eco Update

Luke had his follow-up Ecocardiogram today and his heart pressures are about the same, slightly better, which we will take that news! All and all it was more good than bad this time, which was better to hear. The Cardiologist discussed some ideas about how to get Luke home. It's possible he could be off the Nitric therapy soon and just be on the Sildenafil at a higher dose. We're still thinking he'll have the Cardiac Catheter procedure sometime soon, so he may have that before he goes home. Still not an exact date, but I think we're getting closer.
He's a happy little guy as usual and enjoyed seeing his big brother again today. Bryan is very sweet with Luke. As for a sad note, we were sorry to see Jeremy's mom leave today. A teary goodbye until next time. She's such a help with Bryan and for me too, plus Jeremy and I had several dates over her almost 2 week stay, which was wonderful!
Thank you all for the prayers and support.
Melinda

Happy New Year!

Happy New Year, Happy Boy!!

Here is Luke ringing in the New Year, taken by one of our favorite NNP's Kim L. I think he's sleeping well from his "spa" day he had. Starting off with a long bath (which he loves), a massage, then nursing with mom and settling in for a nap with his daddy. All the things he loves in one afternoon.

Luke is doing well. He's been very active and playful, starting to coo a little more and just loves attention. He seems to always face his head towards his door, as if he's always watching who's coming in to visit him. His doctor had him switch sides in his cribett recently to help turn his head the other direction, so far it's working. We're gearing up for his Ecocardiogram on Wednesday to see how his heart pressures look.

He's had excellent growth and is just filling out really well. He's getting to be a big boy!
Here are his latest numbers:
11.8lbs
21.7"

We are just as hopeful as ever that the New Year will bring great joy and may the New Year bring good health and peace to each of you.
Melinda