Last blog and New Blog For Our Boys

Luke did great at his sedated Echocardiogram on Friday, he is officially off all his medications and doing fine without them!!! His heart looks normal according to his cardiologist (Dr. Peter Chang). He doesn't expect Luke to have any problems with his heart. This was of course great news to hear!!!

We also want to let you know this is our last blog on this blog page for Luke. We've started a new blog for both our boys called "smiles and giggles", that can be viewed at:

www.theyoungs2004.blogspot.com

We'll keep this special blog to remember Luke's first year and our experience with his hospital stay and miraculous recovery. We also want to leave it up for anyone who may want to find information and encouragement for a preemie, micro preemie or extreme preemie that has CPAP, NEC, PPHN, BPD, ASD and a Cardiac Catheter procedure. We hope that Luke's experience can offer encouragement to other's. We especially hope someone who has a preemie with PPHN finds this blog hope full, as a preemie with PPHN living very long is doubtful, but Luke decided to beat the odds and we hope his blog will help other parents in our shoes see that the odds can be beat.

There IS always hope and in Him all hope remains steadfast and true, do not give up, do not give in, but do let God.

Love,
Luke and family

He's Crawling!!!

It's official, Luke is crawling. His proud Godparents were happy to witness his first continual crawling movements forward in their home on Labor Day. He continues to pull himself up on things too, he's a busy boy!!!

Still working on more pictures....

One Year Appt.

Now we're coming to a close of August, I thought I better write about Luke's terrific "1" year appt. He's pushing 20lbs. at 19lbs 12oz. and continues to grow very well, so well that he's growing out of his lung issues rapidly. His lungs sounded "normal" to his pediatrician. Another great surprise, as we didn't expect that for awhile longer. He'll still need to stay as healthy as he can this winter and we'll be keeping a lower profile, but we don't want to think of that right now when we're having summer fun!!

We've been getting out and doing all sorts of fun things as a family. A few of our favorites were, the Evergreen Aviation Museum, the Lebanese festival at St. Sharbel's, Beavers Baseball game, The Zoo and many trips to the local park. Luke is warming up to the swings.

Soon we'll be visiting Grandparents down near Florence, OR in Mapleton and that will be a our first family trip to the area in a long time. I think we're all looking forward to a trip away.

Luke is still working on crawling, starting to pick his knees up and moving forward, mostly backwards, but he's still faster with his scooting skills.

Hope everyone is having a great summer!

Melinda

Luke Turns 1!!!!!!!!!!!!!!

Sorry for the delay since our last post. We've been busy! Included is a picture of Luke chewing on his Birthday bib, I am working on getting more pictures downloaded.

Since Bryan and Luke's Birthday's are only a few days apart, we did a kiddy party for both of them with 9 of their closest friends. They also had small parties on each of their real Birthday's.

We've experienced a lot of emotions centering around Luke turning 1, for me it started on the Friday before his Birthday, that was the day a year earlier that I had the doctor appt. that sent us to Emanuel, where we would wait for his premature birth. The thoughts of that day in particular caused a flood of emotions. Then on his actual Birthday, thinking back to the moment he was born, which started us on a journey with Luke, which we can't thank God enough for the outcome. And his Birthday also marking that he has been home as long as he was in the hospital, so we can officially say, he has now been home longer than in the hospital, which is a pretty darn good feeling.

What has Luke been up to? He is getting more and more expressive. He LOVES watching Bryan and just wants to do what he is doing, always trying to get his toy or get over to where he is. He is the pro "scooter", he can scoot anywhere. He has started getting up and rocking on his knees, so he will be crawling any day now. He is saying more sounds and is displaying more expression for his likes and dislikes. He's a pretty feisty guy and does not like it when a toy is taken away from him. He's eating more solids, but is quite picky, so we're working on those veggies.

Upcoming things for Luke are his vision follow-up appt. and a sedated Echocardiogram in September, sedated because he won't stay still long enough to get good readings. He's being weaned from his Sindenafil heart drug, so if his Echocadiogram looks good, he will be off of it for good. He still has a pending hernia operation for this fall, it will be a day surgery to fix a hernia he developed from an incision site during his intestinal surgery. These are just small things compared to what he's been through, but we wanted to keep you updated.

We've seen some of our NICU friends this month and we always enjoy seeing them and it's apparent they enjoy keeping tabs on Luke.

Hope to get more b-day pics up for you soon.
Melinda

Happy 4th Of July!!

Having fun on the swings today! July 3rd

Here is Luke attempting a ride on his brother's car. He isn't quite riding this, but he sure is interested. He wants to do everything big brother is doing!!

Luke is doing really well! He's teething and trying so hard to crawl. He has mastered "scooting" and has become quite good at it. Soon I know he's going to be all over the house. We spend a lot of time outside and we're also enjoying taking him places with us now. He's meeting many people who are just thrilled to see in the flesh the little tiny baby they've prayed for.

For Jeremy and I, we are thrilled to get out as a family once again. To places all together is very nice.

Luke has a few follow-ups coming up early July, so I'll keep you posted with those.

Melinda

June 4th Doctor Appt.

Today Luke had a check-up and he is 18lbs. 1 oz. & 28" long. His pediatrician is very pleased to see his great growth and so are we!!

Not a lot to report, but our family had the stomach flu, the first for Bryan (poor boy) and lucky Luke didn't get it (yippee!).

We've had a nice visit with some of Luke's nurses and Luke went to his first Mass at St. Cecilia's last Sunday. We will try and visit St. Francis this weekend where Fr. Tom can see how much the 2lb baby he baptized 1o months ago has grown!!

Melinda

Luke's First Mass Sunday May 25th

Today Luke attended is first Mass with us ever and the first time we've attended Mass as a whole family. A wonderful glorious and blessed time for us.

Jeremy and I decided that Luke's first time attending Mass should be at St. Sharbel's Parish in S.E. Portland. The Priest at St. Sharbel's, Abuna, visited Luke in the hospital after meeting Jeremy on a chance visit. After Abuna visited Luke is when Jeremy and I could see changes in Luke, big positive changes and there were changes for Jeremy and I. Abuna brought a certain peace within us and I must say, he is the Holiest man I have ever met.

Bringing Luke to St. Sharbel's for his first Mass was a special place for him and for Abuna and his congregation. Today also is the Feast Day for Corpus Christi and at the end of Mass before the traditional march outside the church with the Eucharist, Abuna told the story of Luke and how Abuna came into our lives. He talked of the miracles of Luke in front of the congregation, it was very sweet to see Jeremy proudly hold Luke up with tears from each of us, it was very moving.

A sweet day for us as a family that we wanted to share with you.

Melinda

Luke's Physical Development Follow-up

Today Jeremy and I took Luke to his physical development follow-up and he is doing great. He is right on track per his due date (making him around 6 months corrected age). He loved all the attention and playing with toys and rolling around with several smiling ladies watching him, he was quite a flirt. He won't need to follow-up until November (his 1 year corrected age). The first picture is from his physical therapy appt., that is the doctor in the picture (Dr. Budden).

After the appt. we visited our NICU friends. His main doctor, Dr. Cheldelin and one of his main NNP's, Kim L. were there today too, so he got to see them and see several of his favorite nurses. I've included a picture of him with nurse Nicole and one with her and nurse Kasey. They were all thrilled to hold and play with Luke, they are amazed at the progress he's made.

It's was very nice to visit the NICU and then be able to leave with Luke.

Melinda

Eating Carrots Yum Yum!!

Luke is 9 months old!

It's hard to believe that it's May already and Luke turned 9 months a few days ago.
All is well! At Luke's check-up yesterday (his last RSV vaccine for the season) he weighed in at 17lbs. 5oz.
Luke had his first cold, a light one and he did very well. I think I was more nervous than anything.
He's now doing a little reverse scooting when on his tummy. He can roll from back to front and front to back now. His doctor says to watch out, in the next few months he'll start to take off! It's exciting for us to watch him discover the world of mobility.
He's also discovering real food with vegetables. He eats pretty well and so far prefers the peas over the carrots.
We also got word that by mid-May we can take him out a little more, still not huge crowds, but at least he can meet all our families that haven't seen him.
Bryan is a good big brother and loves hugging, holding and feeding Luke, he probably would drag him around the house if we let him.
Thanks for keeping up on Luke and our family,
Melinda

Another Picture

Here's Luke in a box.

Latest Pictures

Here are some recent pictures! The 1st one is Easter, 2nd is how big brother Bryan shares his train tracks and 3rd is a stroller ride.

Enjoy!

April 5th No more diuretics, rice cereal & special visitors

I am so sorry that I haven't written lately. I am starting to get e-mails wondering how Luke is doing, so I better hop to it. The picture is a special family that visited us from Idaho, see more below about their miracle named Ryan.



Luke is doing good. He has officially been weaned off of his diuretics. Trying to wean him off of these in the hospital didn't go so well, so having it not effect him at all now is great! He really is a different baby than when he was in the hospital, he's just doing so very very good! Truly a blessed boy!!

Luke also met with the surgeon who did his intestinal surgery for a hernia he has and sometime later this year Luke will need to have the hernia fixed. It's day surgery and he'll need to be intubated, which is always tough on those lungs, but we can't wait too long to take care of it.

He met with his regular physician for immunizations and Luke did very well considering he had 4 shots (ouch!). He is up to 16lbs 1oz and 25 1/2" !

His latest accomplishments are rolling over with push off assistance from his daddy, but he's getting the hang of it. He's doing a lot of hand to mouth activities and making lot's of noise, he's testing those vocals out. He found his feet yesterday, sitting up (with assistance) and touching his toes. He loves sitting up and playing with a toy.

Luke will be trying out rice cereal too, that's right you read it, he'll start solids!!! If he does well, we'll start adding a few things little by little. Soon he'll be joining us at the dinner table.

I also want to share that we've had some more special visitors. Including a phantom nurse (sorry we missed you nurse Christie) who delivered enough train tracks for Bryan to cover the house from end to end. He LOVES them! I love them too, because he is busy building and playing with them for hours!! We also had a nice dinner with nurse Barb (Luke's Primary nurse) and I don't want to forget the nice lunch we had with 3 of Luke's nurses last month, a tasty lunch in the company of these wonderful nurses/friends who will always be apart of our life!

We also had a special visitor all the way from Idaho a special boy named Ryan visited us Friday along with his nice family while on vacation touring Oregon. Ryan's mom contacted us when she saw a prayer request from our couples group we belong to (it's called Teams Of Our Lady and they send out national prayer requests to all members) go out for Luke back last summer, she shared the story of her Ryan with us, born the same gestation as Luke and he also had a wealth of problems, mainly big lung issues, but today is a healthy happy 7 year old boy. Ryan was an inspiration to us and it was wonderful to meet him and his family in person. Very nice people who have invited us to visit them when we can vacation in their area someday. I've included a picture, Ryan is in front to the left of Bryan.

Lot's of positive things to report! I just need to do this more often, so I don't leave these long updates for you.

Thank you for those continual prayers, we are very grateful and we hope to be in touch more often and post more pictures soon!

Melinda

Wed. March 20th "A normal heart!!!"

Today I heard the words "NORMAL" when describing Luke's heart! Words that were music to our ears!!! It's true at his follow-up appt's today, his echocardiogram showed his heart pressures in the normal range and the size and shape of his heart back to normal.
His diuretic doses are now being cut in half to start weaning him and soon his Sildenafil (the Viagra drug) will be decreased slowly.
We also found out that Luke is the smallest patient to have the Cardiac-Catheter procedure in Oregon.
His lungs sound good, still a long road for those tissues to re-grow and it's just a matter of keeping him healthy. We're doing a lot of hand washing around here.
He is up to 15 1/2lbs and he's starting to do some hand to mouth activity with his toys.

Luke is truly blessed and amazing and we can't thank you enough for all your help, support and of course prayers!

Monday March 10th

Here's the boy's today sporting matching shirts from Luke's Godparents.

We're never short on thoughts of the journey Luke has taken us on. We're very proud of both our boys.

Melinda

March 5th

Luke is doing good. We are enjoying home life more than anything. Luke loves his big brother, he constantly watches him and smiles when Bryan plays with him. With the weather getting better, we've been spending more time outside.
Luke had a doctor appt. today and his latest weight is 15lbs 5oz.
He's starting to look a lot less like a preemie with his better muscle tone. His latest thing is to put him hands in his mouth. He also likes to hold his own bottle when he eats.
We've enjoyed the visits from his nurses from the NICU. Wonderful people that have become our friends and we love it when they come visit. These are people that we'll be in touch with forever.
I'll try to keep up with more pictures posted.
I can't say thank you enough for all your prayers and support, you each helped get us through a tough time. More importantly Luke thanks you!
Melinda

Luke had his first stroller ride outside today (he's tucked away in his car seat in the back), the weather was perfect! Both boys had a great time! Bryan loved having his little brother on board.

Melinda

Wed. Feb. 20th

The first picture is Luke getting ready to head to his follow-up appt's. Which he had an appt. this week and he's 14lbs. 9oz now, growing very well!

The 2nd picture is Luke doing his excercises with his big brother right by his side.

We'll keep posting more as often as we can.

Melinda

Tuesday Feb. 13th

Very sorry for not writing recently, but Luke is doing really well!!!
Today he had several follow-up appt's, most importantly a repeat EcoCardiogram and the results are really good. His pressures are now in the upper 20's, which means he's narrowing in on "normal". His heart is also working on going back to it's normal size and shape. His Cardiologist is just amazed and said that Luke is very blessed. Luke also met with his lung doctor, which is lungs sound clear. He'll meet with him and the Cardilogist again next month.
He then met up with the nutritionist and she is very pleased with how his growth is doing.
He is 14lbs 7oz and 24" long. He's growing very nicely. He hasn't been nursing well since we've been home, but I am working on it, plus my milk supply dropped a bit too, so I've been working on bringing that back up too. He takes about 75% of his feeds with breastmilk and 25% by formula since we've gone through all the milk in the freezer. Still, not a big concern since he's growing well and still gets mostly breastmilk.
He's very active and social with naps in between and likes to be in bed before 7pm, sometimes by 6pm. He sleeps pretty good with waking up once or twice, of course I have to bug him with his drugs now and then, but he hardly wakes to take the bottles.
Big brother Bryan is adapting well and still loves to poke at him, but is gentle most of the time. He loves reading books with Luke, it's now a favorite activity. Right now he has his Grandma-Lynn here with him, which is like having a playmate for him. We've been working on getting things back together from our floors being done. They turned out great and are a very nice change from our old carpet.
We've had a few nurses stop in and visit, they are very sweet and good to Luke and us. Which, Luke payed a small visit at the NICU today with our follow-up appt's, it was nice to visit and then go home. We miss those wonderful people though.
For Jeremy and I, we just can't say how blessed we feel. Our family is under the same roof and we're still glowing from bringing Luke home. Each time I recount the miracles of Luke, I can't help, but get teary eyed. He definetly had other bigger hands on him from the begining, it's nice that we can see it, but it's really nice when everyone who's been involved with his care, see's it too.
Hope to write more often and post pictures soon too.
Melinda

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