December 26th

We hope you had a wonderful Christmas. We were blessed with several things the last few days, starting off with being able to spend time with both our families. We also had a Christmas shopping date one night and a dinner and movie date tonight, very rare for us, but much needed and we really enjoyed.

We enjoyed watching Bryan's face when he saw that Santa had come to our house. After spending the morning with him, we spent the afternoon with Luke. Playing Christmas music and opening his gifts. The greatest gift was something we couldn't imagine. An icon featuring Our Lady of Charity blessed by the Pope circulating the Nation landed in Luke's room. We couldn't believe it. For 24hrs he had in his very own room this beautiful painting dictating the story of 3 Cuban men in trouble out at sea and the seas calmed right where they found a statue of Mary floating with a board on it that was inscribed "I am the Virgin of Charity". The men were saved by this statue. There was a shrine erected in her honor. The Knights of Columbus are circulating this icon around the nation and our local Knights felt that Luke's room would be a good spot for it to visit. All we can say is that we felt very blessed. We all said some prayers upon it's arrival. I've included a picture.

As far as Luke is doing, he's doing very good. He hasn't had the back slide that was expected coming off of the steroid. His lung doctor says that Luke is just short of a miracle in this department. It's wonderful to hear this good news, it was music to our ears. We've decided to postpone the Cardiac Catheter procedure. There's still not a complete certainty that Luke's heart is big enough to have the hole closed and we want to make certain that he only has to undergo this procedure once, so we are holding off a bit for him to get a little bigger. He'll remain on Nitric Oxide and have a repeat Eco Cardiogram next week to see if his pressures are stabilized.

He's a very social guy, smiling a lot at everyone and today enjoyed floating in his bathtub getting all clean.

He's about 10 1/2lbs right now and looks really good, he has a few "rolls" on him.

We appreciate all your prayers and support. Merry Christmas!

Melinda

Another Conference

Luke is doing fine, he's had a little rebound effect from being off the steroid. He's required a little more diuretics to remove wetness from his lungs, but still down on his oxygen requirements. He's been in a good mood visiting with his Grandpa's and Grandma's from out of town.

Since Luke's pressures in his heart went up slightly the conversations about closing his ASD have come back up. Yesterday afternoon we had a conference with his specialist including the doctor that would do the procedure. It's called a Cardiac Catheterization, they can measure direct pressures in his heart to get an accurate reading of the pressures and they can insert a device that can close off his ASD. Which they will take all the measurements first to see if his heart could handle it, if his heart can't they wouldn't do the procedure, but they would still have the accurate measurements needed for the next treatment options. Closing the ASD would very likely help his lungs out enough that they could heal a little faster, buying him the time he needs. This procedure is done through the main artery in his leg, the only draw back for the procedure is that he would need to be sedated and on the ventilator, but hopefully only briefly. The ventilator is so hard on his lungs. We do see how apparent it is that the procedure done now while his pressures are under control. Jeremy and I are still talking to doctors about this and are seeking advice from specialist from out of state to make certain we are making the right decision. It's been tough having to consider this.
Thank you for all your support and prayers through this.
Melinda

Wed. Dec. 19th

They've been cleaning the floors in the NICU and today Luke moved to a different room while his area is cleaned. He has a private room, but with a window. It's out the way in the back, so we're not certain if he'll stay there or not. I held him by the window so he could see outside, he was definitely checking it out. In fact I sat back down and rocked him, but positioned him to still see out the window and he snuggled in and just gazed out the window.
He had his last dose of the steroid Monday and is weened down to a low amount of the Nitric Oxide. He had a repeat Ecocardiogram, the pressures came up slightly from last week. Which is disappointing, since we want those pressures to go down. The idea of closing his ASD has come back up, where the ASD is located on Luke is right next to a small flap that should be closed, but because of his heart working harder on one side than the other, the flap is a bit stretched and making his ASD a bit stretched too. We're talking to his doctors and specialist to see what looks to be the next option. There is a procedure where they can go through the artery in his leg, which is much better than through his chest, he would need to be on the ventilator, so we have some thinking and decisions to make about what approach is best.
Luke is very active and social. Lot's of cooing and smiling, he's such a happy baby. He also started sleeping 5 hour stretches at night. He's getting to be a big boy. I was taught how to massage Luke from his Physical Therapist yesterday. He loved it! Babies born as early as Luke can think of touch as being negative, so massage helps them work past that. Already I can tell how much he loves it, which is really good!
Lately we've had some conversations with friends that didn't realize how "normal" Luke is. A few were able to see him in person and were really surprised at what a perfect baby he is. Which we still hear from the doctors and nurses about babies with Luke's condition don't respond like he does, he's very unique in that sense. Truly amazing and of course wonderful to us!
Sorry for the delay with his statistics, but here they are:
9lbs 7oz (about the same as last week, the steroid reduced any and every bit of inflammation in his body, so this wasn't surprising and isn't concerning)
Length 21.2" (good growth!!)

We're having fun preparing our house for company this week, have Grandpas and Grandmas visiting soon.
Melinda

Picture Time

Today we had a "photo shoot" as a family today. NNP/Photographer Kim L along with nurse Kacey, took some great photos. I've posted a few for you to see. (Bryan wore the Santa outfit his first Christmas too).

Luke is doing well and the rest of us too. Jeremy thought he was all better, but he was feeling a little sick this evening, hopefully some good rest will cure that. We did add some more holiday cheer by getting our tree up and decorated. It's beautiful. I've included a picture from our tree hunt too.

Hope everyone reading this is doing well too. We'll post Luke's latest statistics tomorrow.

Melinda

Dec. 14th

These two pictures were from some friends that visited last week and took these great shots. After several days of Luke being uncomfortable and hard to settle, finally today he was more like his easy going self. He rested better and just seemed more content. This is most likely because of the steroid he's been on. It can cause this. Now he's being weened off of the steroid, which it has helped, his lungs have been able to expand better with the inflammation down, they do look really cloudy from scar tissue, but better expansion does help. He's slowly being weened from the Nitric Oxide therapy, which can also give him a headache and make him not feel good, so reducing that a bit is most likely helping too. His latest Ecocardiogram follow-up showed the pressures down in his heart again, which means that is working too. He'll have a repeat Eco next week, it's kind of a waiting game right now, just waiting to see how he does coming off of these two therapies used.

His nurses brought in a "sky show", it reflects images on the ceiling in a circle. Luke enjoys watching the images go around. He's still very interactive and social. He loves being held and likes to hold hands. He's the grandfather of the NICU being the longest one they have there right now. He received his first Christmas gift this week, a pair of puppy shoes from one of his nurses. Very cute and special. His room has had some additions this week too, one being a picture board of Luke pictures and he now has a bouncy seat to sit in too. Still his swing and sitting up in the boppy pillow are his favorites.

One very tough thing for us this week, is that Jeremy has been sick with a cold. He hasn't seen Luke much this week and he's very anxious to get well, so he can be with him very soon. Tons of prayers are going out for Luke, which just amazes Jeremy and I, we are extremely grateful. Thank you,

Melinda

Tues. Dec. 11th

Luke started on Steroids and they are helping a bit. Today's x-ray showed that his lung expansion went up, but it also shows that he has a lot of scaring on his lungs. He'll have a repeat Ecocardiogram on Friday to see how his heart pressures look. Being on the Nitric Oxide already makes Luke irritable (a side effect), but the same side effect is reported for the Steroid too, so needless to say, he's been a cranky pants. Another side effect to the Steroid is an increased appetite, so he's cranky and hungry all the time. He should be off the steroid by the weekend, thank goodness.

His latest statistics are:

9lbs. 8oz

20 3/4" long

One of our favorite NMP's Kim L is also known to be a photographer and took some great shots of Luke over the weekend. I've included a few for you to enjoy!

Thank you so much for those prayers and all your support, you don't know how much we appreciate them and how much it really is helping us.

Melinda

Sat. Dec. 8th/Devineness

Luke continues to do well, he's his normal happy self. He looks good and eats very well. They've upped his oxygen flow to help with some of the wetness that makes it harder for him to breath while on the Nitric Oxide therapy. They've had to adjust his food since he has to take a few different medications while on the Nitric therapy and that changes the composition of his food and they have to keep it easy to digest for him. It's a balancing act of how changing one thing causes a change with another. Tonight steroids begin to see if this will help his lungs heal. They will start them tonight and then they will tapper them off as the week goes on. He can have repeat steroids if needed, but this is the start to see if this will help jump start some healing.

As for Jeremy and I, it's been tough, but we've had some great "intervention" the last few days. One being Luke's Godparents getting the prayers going in full force for Luke and us. They are amazing. Another has to do with a Maronite Priest from St. Sharbel's Parish that Jeremy met for a business call yesterday. He has brought Jeremy great peace and today I had the pleasure of meeting him at the hospital. He came by to pray, and bless Luke and me and his nurse. Very wonderful and peaceful. He reminded me to not be afraid, he said to me in his very humbling voice, "Luke is fine, don't be afraid" and reminded me to not have any fear and before he left said "there cannot be any fear in Luke's room".

Jeremy and I are very hopeful, but having this Maronite Priest intervene reminded us that we are not alone in this. We are never alone.

Nurse Barb and I talked a lot today and she mentioned an article that Bishop Vasa wrote called "Spiritual fulfillment begins with a genuine sense of hope", I read it tonight and it's very good. You can read it at:

http://www.sentinel.org/node/8563

We will always remain hopeful and especially during this Advent season, may we all be reminded of the hope our Savior brought to us. Emmanuel meaning "God is with us", is in our hearts this Advent season.

See this website for more information regarding the Maronite Order:

http://www.maronitemonks.org/MaroniteCatholics.htm

Melinda

Conference News

Yesterday Luke had a repeat Eco cardiogram. Unfortunately the pressures are up in his heart again and the Cardiologist started him on Nitric Oxide therapy again. This was disappointing because it means that the Sildenafil isn't working as well as we hoped and he won't be going home soon.
Today we had a conference regarding Luke's lung and heart issues with his main doctor, Cardiologist, 2 of his NMP's and 3 of his nurses. We were able to get several of our questions answered and discuss what's next for Luke. With Luke's heart pressures being up, it's not possible to close his ASD, which could help his lungs, if they can get his heart pressures down, then it's a possibility. I would like to say the meeting was all hopeful, but it wasn't. It's the bare truth of Luke's lungs and heart. We are buying him time in hopes he can grow out of his lung issues, which would lower the pressure in his lungs that is causing the extra pressure in his heart. A repeat Eco cardiogram will be done to see how the pressures look in his heart being on the Nitric Oxide. There are a few other things they can try, but the options are becoming slimer.
How are Jeremy and I doing? I had a very difficult time during the meeting holding back my emotions and Jeremy and I talked afterwards allowing us to let our emotions fully out. Although it's troublesome hearing the different sides to Luke's lung and heart concerns, we appreciate his doctors informing us of all scenarios. Jeremy and I remain hopeful and will continue to take things with Luke one day at a time. We also realized even more today what a great staff Luke has caring for him. We know these people are pretty special, but they also honestly care for Luke, Jeremy and I. There hearts are with ours and several are more than just Luke's caring staff to us, they've become part of our family. We pray for each of them daily, as they need our prayers through this too. It's not easy being in their shoes either.
How is Luke doing? He is doing pretty good. The Nitric makes his lungs wetter, so he's on a stronger diuretic, which seems to help him. He continues to eat well and is just his normal happy self. Jeremy and I enjoyed playing with him together after the meeting, something we don't do very often together. For me, I have to say watching Jeremy with Luke is extremely special. He's such a good dad.
How's Bryan? Bryan actually seems kind of sick the last 2 days, I was thinking it's him cutting his molars, but this evening, I am not certain if it's not something else. He was fine having me leave this morning, but this evening, when I needed to leave for a bit, he had a melt down and didn't want me to leave. That's always a sign that he doesn't feel good. He did have fun helping us put a few Christmas decorations around the house, something that helped lift our moods.
We appreciate each of you taking this journey with us and for those continual prayers that are holding us together and guiding Luke.
Melinda

Big Boy Room

Luke's such a big boy now that today he was moved into his very own room. It is close to where he was, but more private and much more quiet. It seems to be a hit for him and also for us.
Luke was liking lounging in his swing, but his physical therapist came by and said he was sitting up too forward, but the swing doesn't recline anymore and I discovered that it won't swing anymore either. Just when we thought we would be searching out a new swing, tonight Luke's spectacular Godparents delivered a new swing. They were going to wait until he came home, but thought that he could get used to it now and then when he goes home, it will be something familiar to him to help with the transition. It is adorable, it has a rain forest/jungle animal theme, plays songs and nature sounds, plus it can swing side to side as well as back and forth. It's like the Cadillac of swings. Just a wonderful and perfect gift for Luke.
Still scheduled for Thursday morning is Luke's conference with his nurses and doctors. We'll update you with how that goes.
Melinda

Monday Dec.3rd

Luke is doing fine today. He had his last 2 month immunization last night and did fine. He's still enjoying being in his swing and of course he loves being held too. He continues to not need the feeding tube. He's doing very well without it.

Here are his latest statistics:
9lbs. 4oz.
20.7" long

18 weeks

We're very proud of our littlest boy.
Melinda

Sunday Dec. 2nd

Luke is doing well. They, I mean he took his feeding tube out late Friday and it's been out ever since, he's taken all his feeds by bottle since. Guess he had enough of that tube.

We brought his swing in, which he loves. It doesn't even have to move and he loves just being upright and looking around. He also sleeps pretty soundly in it (see pictures). He slept 4 hours straight last night in it. He also has been quite a flirt with the nurses.

His care conference was postponed last week and rescheduled for next Thursday. There will be several doctors there to discuss primarily his ASD (heart murmur) and how it's affecting his Pulmonary Hypertension. Still deciding to do surgery or not.

Today being the first Sunday of Advent has brought our family closer together after a hectic week. We are spending the later afternoon at a holiday party with our couples group from church and their families. A well needed break for some seasonal fun for all of us.

I'll post Luke's latest statistics tomorrow.

Melinda