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

Wed. Nov. 28th

Luke continues to do well. He's retaining a little bit more of water than usual, so they will add a little more dierectics to see if that helps him out. Extra fluid makes him work harder at breathing and just makes him tired, but he still manages to eat ok.
I've been more tired the last few days myself. With all the different doctors we've talked to and now with several different scenarios about how to get him home, I think I am just feeling a little overwhelmed. I felt better talking to one of his doctors today who said they won't send Luke home until he is ready and he's not quite ready yet, they know how much care Luke will need at home and don't want to send him home when it would only mean a trip back to the hospital, so needless to say it's best to wait until he's really ready for life outside the NICU. It will be soon though, I can just tell from how well he looks.
I am also a little worn out with Luke's pumping schedule, I pump every 2-3 hours and sleep a 5-6 hour stretch at night to keep the schedule up. I can't believe I've been doing this for 4 months and still managing to talk coherently to his doctors and then turn and be in a 2 year olds dialogue the next. It's just the reality of it and when Jeremy and I signed up for "more kids", we signed up for whatever God was meant to let us have and apparently we've been qualified for this and with His grace, take each day in stride.
Melinda

Mon. Nov. 26th 17 weeks

Luke had great growth last week, his latest statistics are:
8lbs 8.5oz
20.5" length

This is great growth for his lungs too, which are sounding a little better. He had his follow-up Echo cardiogram today and his pulmonary pressures look a little better. Not huge progress, but they do look a little better. His Cardiologist is increasing his Sildenafil to see if that will make a difference. Luke will have a repeat test next week to see how it helped. We're planning on having a care conference Friday with Luke's doctors, specialist and his primary nurses. This will help answer questions that we have and discuss what's next for Luke and the best scenario for getting him home. It's possible he'll go home on the high flow nasal cannula. It will be good to go over everything.

Luke looks very good, slightly grumpy on the Sildenafil, but he just looks very good that you wouldn't think that he has anything big going on in the inside. The physical therapist stopped by and offered some pointers on helping a few of his muscles out. In particular the muscles that work around his chest area to help his breathing. It's amazing what little maneuvers can be done to help his muscles out so easily.

Today I brought a special relic from Saint Therese to his bedside and placed it on his chest, praying for those lungs and heart to get better. A good friend is letting us borrow this precious relic, it was wonderful praying with him and having nurse Barb today chime in. I get all chocked up during these moments, the love for this little boy is immense, indescribable. We also received a special note in the mail recently. A Mass will be said for Luke and our family on Sunday Dec. 2nd by Fr. Peter Fernandes at his church in Chicago. He also has continual prayer intentions at Mass with Fr. Tom at St. Francis in Sherwood. These are just a few of the very special prayers that are going out for our Luke. We continue to feel blessed by all your love.
Melinda

Sat. Nov. 24th

Luke is off the Nitric Oxide and doing fine without it, which is good. He'll remain on the Sildenafil for some time. He will have his follow-up ECO on Monday and Jeremy and I along with Luke's doctors will all meet for a conference on Friday to go over everything.
Thanksgiving was nice, especially being surrounded by family, I spent the earlier part of the day with Luke, so I could focus on being with family the rest of the day. However, how nice as Thanksgiving was, I kept feeling as if somebody was missing. It's a very uncomfortable/odd feeling. Something I can't describe.
One special thing to mention about Luke's Thanksgiving was his nurse made him a Thanksgiving card with pictures of him with cute sayings. It is just adorable.
Friday Bryan and I spent time up with Luke, Bryan gave him plenty of hugs and kisses, very precious.
Today Luke had a special visitor, a harpist came and played for him. Beautiful harp music right next to him (and me while I held him). Apparently Music Rx has volunteer harpist to play for patients. Luke (and I) loved it. It was the nicest and prettiest moment. I found out that they will come back once or twice a week to play for him and they will call and tell us beforehand, so we can come and enjoy it with Luke too.
I think Luke is gaining well because he feels heavier and those little cheeks are getting a little chubbier. I'll post his latest statistics on Monday.
Melinda

Happy Thanksgiving

Luke continues to do well. The Sildenafil initially seemed to make him irritable, but today Luke seemed more comfortable and he was able to rest well. I sat with him last night for several hours, just letting him lay on me and sleep. He is weening off of the Nitric Oxide easily. They will continue to drop it down over the next few days, possibly being off it by the weekend. They can't drop it instantly because once on it, the lungs depend on it, so they must slowly take him off of it. The lung specialist checks in on him 3 times a week and he'll have a follow-up ECO on Friday with the Cardioligist.
He continues to eat very well and loves to stare and study faces. I love looking into his eyes.
We have very much to be thankful for this Thanksgiving and one big one is how our whole family has endured this challenging time with us, but also for all your prayers and support. We are thankful for each of you. We most importantly are thankful for God's love, His grace gives us strength when we are challenged and weak. He is the one wrapping His arms around Luke and our family. Without His love I wouldn't realize the full meaning of what life is and how important each life is, from the tiniest to the biggest, to the most young to the very old. God's love is abundant.
Melinda

Mon. Nov. 19th 16 weeks old

Luke's lungs have responded well to the Nitric Oxide therapy. His x-rays on his lungs look clearer. This is encouraging. Still not out of the woods in this department, but still encouraging news is better to hear. Today they will start him on Sildenafil, this drug dilates the blood vessels to allow more oxygenated blood flow to soft tissues like the lungs. This drug is also sold on the market as Viagra. Keep in mind that it was used first for medical conditions like Luke's. They will start to ween him off the Nitric Oxide and keep him on Sildenafil. Luke will have a repeat ECO on Friday. We'll know more then with how his lungs and heart are doing with this therapy. It is possible that he may have to have heart surgery to correct that tiny hole in his heart (ASD). Once close to 10lbs it is a less evasive surgery. We just need to keep him growing well. Which on that note, here are his latest statistics:
Weight: 7lbs 11.5oz
Length: 19"

He continues to eat well, which they started him on a more protein based mixer with the breast milk. This will help with better bone growth.

Melinda

Sat. Nov. 17th

Sorry for the delay in blogging. Luke is doing well. He's eating well, nurses well and continues to have good awake time. His doctors have been concerned about weening him off of his High Flow Nasal Cannula, to the point of having a specialist look at him. Which yesterday the specialist met with Luke and checked his latest x-rays. We've known Luke to have a very small ASD http://www.americanheart.org/presenter.jhtml?identifier=11065
This ASD is causing problems with his lungs. Which there are a few different scenarios that can take place with this condition, some really scary. We prefer to consider the most hopeful, which is his lungs will improve within in the 24-36 month re-growth period.
Today the specialist started him on Nitric Oxide Therapy. Inhaled Nitric Oxide dilates the blood vessels in the lungs to allow more efficient delivery of oxygen and elimination of carbon dioxide. It also helps send blood to the most oxygenated areas of the lung and to decrease inflammatory responses that make lungs less efficient.
The only real change that anyone may notice is that he has two large tanks parked next to his cribette. So far Luke has responded very well to this therapy. It will continue through tomorrow and possibly another day or two as needed. The specialist and doctors will reevaluate next week for the next step.
Hearing all the scenarios of his lung issues and that he most likely won't be home for Christmas, leaves some overwhelming emotions for us, I try to stay confident and positive, which looking at how perfect and handsome Luke is, no one would know that he has some internal problems. Overwhelmed holding and looking at him today, I couldn't hold back my emotions. Barb a wonderful nurse in the NICU offered comfort and great support.
We appreciate your wonderful support with Luke and most importantly all your prayers. He has us on a journey, a journey that brings us to our knees one day and great joy the next. All I know is that I feel very blessed to hold and love this wonderful little boy.
Melinda

Wed. Nov. 14th

My littlest angel is a night owl it seems. I've been able to catch a few of his evening feeds and have seen first hand the kind of energy he can have in the late evening. He's pretty active with his hands and feet.
He still is doing great with his feeds. It's wonderful to be able to have good nursing sessions with him.
Since he regulates his temperature well now, he graduated to a "cribet", it's a small version to a regular crib. It's pretty cute. We'll be putting his mobile up now and that will add some more fun to his NICU life.
Melinda

Mon. Nov. 12th

Luke continues to do well. Now taking 75% of his feeds by bottle or breast. They tried to reduce his air flow today to 500cc (down from 1 liter) and he didn't tolerate it very well and has been moved back up to 1 liter. Which the focus right now is his feeds, so it's not too worrisome. His liver levels are now down in a normal range today. He is now off the supplement they gave him to assist his liver. One less thing he needs.

Here are his latest statistics:
7lbs 6.5oz
18.9"

15 weeks old

Thank you all again for those prayers and support.
Melinda

Sat. Nov. 10th

Here is a picture of Luke from Halloween taken by one of our favorite NMP's Kim L. He continues to do well. Taking about 60% of his feeds by bottle or breast. We're very proud of his progress.

Stay tuned for his latest statistics on Monday.

Melinda

Thurs. Nov. 8th

Today was my original pregnancy due date, it creates some odd feelings in me, but Luke was a superstar nurser today, which helped my spirits a lot!! I also gave him a real bath today. He liked it at first, then he wanted out. It was wonderful getting him all fresh and clean.
He is down one more notch on his high flow nasal cannula, getting closer to moving to the low flow. He has taken half of his feeds by bottle and he is down to a 1 hour duration on the balance of his food, close to the 30min norm. Hopefully he'll take more and more by bottle and nursing, so he won't need the feeding tube. He is also growing out of his preemie clothes and he is out of the newborn size diapers.
Luke looks really good, it's nice and encouraging to see him doing so well!!
Melinda

Tues. Nov. 6th

We have great news to report. Luke's eye issue has self-resolved and he has no eye issues, they are completely fine. He'll still have a follow-up in about a year, but from what they can see now (no pun intended), his eyes will be just fine. Very wonderful!
Also, after I left yesterday the nurse said Luke was just rooting around like crazy, so she checked with the NMP's (nurse practitioners) and they said to go ahead and bottle feed him and see how he does, which he did wonderfully and loved it. Well, he's taken a bottle at about every feed since. On occasion a full bottle and other times about 1/4-1/2. This is a HUGE step for him! In the past he's only been able to take maybe one bottle a day and it's only been about 1/2 at the most, so this is great progress! We're so delighted. We know he can get tuckered out, but at least we know he can do it! He's getting there!!
On a frustrating note, I have a stuffy nose today, so I am home all day. The nurse is getting used to my phone calls. Hopefully it's nothing and I will be fine tomorrow.
As for a Bryan update, he's starting to put 3 words together at a time. It's very cute.
Melinda

Mon. Nov. 5th

Here are Luke's latest statistics:
7lbs .02oz
18.7" long

14 weeks old, 40 weeks gestationaly and his 100th day in the NICU.

He is continuing on well. Working on shortening the duration of his feeds this week. He is making good progress in this area. His liver levels are coming down some more, which they are almost in the normal range. All over he's making good progress.

Thank you all for your prayers and support!
Melinda

Sun. Nov. 4th

It's hard to believe that Luke is 40 weeks gestationaly today. It's a very emotional thought for us. We are very proud of him though, he is still doing very well. I've continued to have great nursing sessions with him. He is so soothed and comforted, it's really nice to have this bond with him after not being able to for so long. I'll be able to start nursing him more next week. The plan right now for him is to focus on his feedings and not worrying about his oxygen level too much. He actually needs very little oxygen it's just the air flow that he has needed to keep his lungs open, especially when he is at a full feed and that belly wants to push on his lungs. After he does better with his feeds, then we'll work on his air flow. Of course the plan may change if his needs change.
We've had a nice weekend and have had some great family time.
I'll post his latest statistics tomorrow.
Melinda

Friday Nov. 2nd

Luke is still doing well. His IV's luckily made it through today, which today was his final day needing an IV, so this afternoon he's IV free again (yippee). He has nursed very well the last few days, they are still only wanting him to nurse once a day, but I have a feeling next week they will bump him up since he's doing so much better. He's been a lot more feisty this week. He's looking around a lot too, so we hung a decorative baby toy above him to look at. He's been very interested in it.
Hopefully this weekend he can wean down a bit on his air flow and then he can be on the low flow nasal cannula again (instead of being on the high flow). This will make it easier to bottle feed and nurse him.
As for an update on our Halloween, Bryan loved being an elephant (a hand me down from his cousins) and did his first trip around the neighborhood for trick or treating. He was having fun collecting candy, it quickly became a game for him. He also had help from his friends Dax and Kasey, our neighbors. Despite being exhausted that evening, we all had a good time.
We'll work on posting pictures.
Melinda

Wed. Oct. 31st

Happy Halloween. Luke is still doing well. He's really alert when he's awake. Looking around and rooting a lot too, loving his pacifier. Today I got to start nursing him again and he did very well, best he's done ever. He is up to a full feed today with his feeding tube. His doctors would like to keep his IV antibiotics going through Friday, but he is still having problems with his IV's. Hopefully his last few spots will last, the only other option is to put one in his neck and that doesn't sound like such a nice thing. We hate seeing him poked so much.
Overall he looks good and is doing well. He had on an orange little pumpkin outfit today, it's one that Bryan wore, it's a little big, but very cute. His nurse made him a paper pumpkin and put his picture in the middle, very sweet.
Melinda

Tues. Oct. 30th

Luke will be up to a full feed by tomorrow since he's tolerating more food with ease. This will also allow them to put some of his IV needs into his food and will help eliminate the IV's by Friday. They are running out of IV spots on him and today tried putting a PIC line in to avoid having more IV's, but after 2 attempts it wouldn't work, so we just pray his IV now can hold up. Luke looks good and his tummy looks good too, not so distended like it had been for so long. It is very nice to see him looking and feeling better.
Melinda

Mon. Oct. 29th

Luke is doing better today. In fact I got to hold him for a long time today, which was wonderful after not being able to for a few days. He is breathing well and they increased his feeds a little more today and then a little more tonight. They did find his C-reactive protein elevated slightly which means that he could have developed some sort of infection, but it's nothing serious and it could even be viral. They have had problems with his IV's, which is normal for babies to have tricky veins to work with, so this evening they had to put an IV in his head, which as un-nerving as it sounds, it is actually normal for babies.
Here are his latest statistics:
6lbs. 9.5oz
18.6" long
We were glad to see that even with his set back he still had decent growth.
Melinda

Sun. Oct. 28th

Luke did fine through the night last night and had no fever. His lab work continues to show no signs of infection and his x-rays look better today. They were able to take him off the ventilator this morning and moved him to the high flow nasal cannula. He has been resting pretty comfortably. It is wonderful seeing him off the ventilator and looking better today. They did start some small feeds up today to see how his tummy will do and so far he's doing fine.
The only thing that they have been able to determine why this happened is due to the fluid build up on his lungs from not having the diuretic. He can't go home on diuretics, plus they are not good for him to stay on, so moving forward his doctors will work on a different plan on trying to move him off of them, right now though, it's clear he needs them.
On another note, Jeremy's mom went back to Sacramento today. She's the type of mom-in-law who is very handy around the house. She practically renovated our house. She also became Bryan's favorite playmate, but most importantly she helped create some consistency in our house for the last 10 days, something we haven't had in a long time, plus I enjoyed the late evening talks while I pumped. We all are missing her (especially me) and can't wait for her return.
They will take Luke's statistics tonight, so stay tuned.
Melinda

Sat. Oct. 27th

Luke is still on the ventilator today. They were thinking of moving him off the ventilator, but he started to run a fever. They will possibly take him off the ventilator tomorrow depending on how his night goes and that all his blood cultures they took yesterday still are showing no signs of infection. He is very uncomfortable on the ventilator and have sedated him a bit to relax him enough so he could rest well. In our opinion, feisty is a good sign. He also hasn't ran a fever the rest of the day.
They also moved him back to the intensive care side of the NICU this evening. This will allow him to have more skilled nurses while he gets through this. It's tough to see him back on the other side, but it's also good knowing he will have even more skilled care.
We continue to take things one day at a time.
Melinda

Friday Oct. 26th

Luke is showing us that he doesn't like change in a big way. Last night his breathing became too labored and his blood gas levels were elevated at a scary level. Unfortunately they had to put him on the ventilator to stabilize his breathing. They also needed to do another transfusion to help give him a boost to get through this. They started up the diuretics again to help take some of the moisture off his lungs that was adding to his difficulty in breathing. It's been a rough day, Luke doesn't like the ventilator and reacts to each time they need to suction him or move him or take his blood. He is a tad more stable this evening, but still is making us nervous. There is also no sign so far of any infection lurking about in him, thank goodness.
I didn't hesitate voicing my opinion to Luke's doctors today about what I had been seeing and they continued to push him anyway. Moving forward they will listen to us closer, which we do respect Luke's fine doctors immensely, but part of his care is also what the parents see going on and that can't be set aside.
I've been asked a lot today how we're holding up and I have to honestly say, it's tough, incredibly tough. Seeing an innocent baby struggle is hard, but seeing your own baby struggle is the hardest. It's each of our hearts laying in that little bed struggling along with his. We never fall short on hope though and we owe it to our faith that is keeping us glued together.
Luke needs those prayers that you all diligently provide. Jeremy and I can't thank you enough for them.
Melinda

Wed. Oct. 24th

Luke is pushing back a bit with some of the changes he has had recently, but overall doing okay. He's had more desat spells and is requiring a bit more oxygen, which is most likely going off the diuretics. We're hoping he can adjust to the change, so he won't need those anymore. Another wait and watch type of thing.
This evening Jeremy and I met with the Charge Nurse and the NICU Manager to see about getting continuity in Luke's nursing care. Luke has a primary day nurse and evening nurse, but since they work 12hr shifts they are typically there for no more than 3 days a week, which means the other 4 days can end up with nurses he's never had. When they don't know him it creates a little turmoil when they see some of the things Luke does, which are just the regular things he does. We have a good plan moving forward, so we'll see how it plays out.
Tomorrow Jeremy and I have a CPR class. The NICU asks all parents to take the class. If there are any scenarios that pop up while Luke is in the NICU, then we can practice before we go home. It's more of a just in case type of thing.
Thank you all again for those prayers. They are really helping!!
Melinda

Mon. Oct. 22nd

As promised I have Luke's latest statistics:
6lbs 2oz
18.5"

12 weeks old and 38 weeks gestationaly

Luke is having another good day. We switched from a continuous feed to a 2hr duration of feeding. Tomorrow we'll try a 1 1/2hr duration, just slowly working towards regular feeds. We're also back to working 2 bottle feeds a day and at the breast once a day, gradually increasing it. He has been able to pull out of the desat spells with less intervention and he's been having less of them too. His liver levels look better today too. He's also doing fine without the diuretics. All positives to report. He still has that big belly that we're keeping an eye on.
Melinda

Sunday Oct. 21st (Picture)

Here is a recent picture of Luke. Stay tuned for his latest statistics tomorrow.

Melinda

Sat. Oct. 20th

Luke is doing pretty good, still having less desat spells, which is good, which also means he's doing well without his diuretic. Both Jeremy and I got some good quality time in together with him, which isn't something we get to do too often together. He also has had pretty consistent weight gain this week, so fortifying his food with my hind milk is working.
It was a tough day yesterday in regards to Luke's neighbor Olivia. Despite her many ailments, she was scheduled to go home (her third trip) on Tuesday and I enjoyed sharing the excitement this week with her mother. Suddenly things took a change for the worse yesterday and they couldn't save her. Right next to me sheltered by the curtain, I could hear the pleading of her mother and then the sobbing by everyone involved. I sat there holding (or should I say clinging) to Luke praying that Olivia would make it. Olivia's numbers were on Luke's screen because his nurse was checking on her too, so I could see when the screen went dark. A very tough moment that has shaken me up. Please pray for Olivia's parents.
I will have Luke's latest statistics posted on Monday, so stay tuned.
Melinda

Thurs. Oct. 18th

Luke is doing fine today. They are trying him without his diuretics to see how he does and if he still needs them, then they will keep him on them and start to ween him off slowly. Apparently his diuretics change the sodium and potassium he needs, without the diuretics his sodium and potassium levels should go back to normal and he won't need any added to his diet.
They are attempting to ween him a bit on his oxygen flow level, but he started showing signs that he still needs a little extra flow to help his lungs. He is down on the amount of oxygen he needs, which is a good thing. They did do a blood check since they needed to check a few other levels in him and he is still producing his own blood cells fairly well, which is great.
He's just taking his time. We still dream of when he can come home.
Also, Luke's Grandmother Lynn came into town last night and got to see and hold Luke for the first time (a very special moment). She'll be here for the next 10 days. She's a great help!
Melinda

Tues. Oct. 16th (Picture)

This picture was taken when Luke was on vacation in Rome. Visiting our "Papa" was a treat on his visit. It's actually sponsored by Luke's wonderful Godfather David. What a fun photo!

Well your prayers are working, both of the tests Luke had yesterday came back with no issues or concerns. Since Luke has been gaining a little more consistently the last several days and he's been down on his oxygen we are feeling he is making a positive trend and we'll just wait and see how he continues. He's been having better awake time the last few days too and just looks a little better.

I am working on my milk supply trying to get more milk and also beefing it up with more fat. Apparently I am still producing milk for a preemie, but now that Luke is nearing full term gestationaly my milk fat is lagging behind. A more protein and healthy fat diet will help. Good thing I love avocados!!

I thought I would also share a few pluses and minuses to our NICU life. Pluses are the wonderful nurses that care for Luke. In particular Luke has a primary for day and night, these two nurses follow Luke all along until he goes home. They both do such a good job and I always feel better when they are there because they know Luke and they know Jeremy and I really well. It just makes it reassuring for both of us when these two nurses are there watching over our precious miracle.

A minus is not all babies do make it home. We just lost one yesterday morning that we got to know. Please pray for little Emma, she was born with a complicated birth defect and fought hard to be here, but just couldn't pull it off.

And a plus is seeing babies go home. The first baby Luke was next to in the NICU was a little girl named Riley, born at 30 weeks on July 1st at 18oz in weight because she wasn't growing in the womb, is going home tomorrow at just over 7lbs.

It's impossible to be sheltered from the sad things in the NICU, but we just try to focus on what a miracle our Luke is to us and stay positive.

Melinda

Mon. Oct. 15th

Luke had an Ultrasound and upper GI test today. Both tests went well and Luke tolerated them well. We will find out the results tomorrow. They decided to do the Ultrasound because his liver levels are still high (also why he's still on the yellow side). There are medications that they can start him on, but they wanted to check him out first with the ultrasound.

He did have his weekly statistics last night:
5lbs 11oz.
18.1" long

He's making progress.

Melinda

Saturday Oct. 13th (Picture)

No big changes for Luke. He has started to self-resolve a few of his Desat spells, but when he has a bigger one that he can't pull out of he needs pretty good assistance to pull out of it. Thank goodness for those good nurses.

Luke's tummy his still distended, it's soft, but still pretty big. We've all thought it would gradually go down and some days it does look better than others, but overall, it really hasn't changed. Because of this, on Monday the doctors want to do an upper GI test. It sounds kind of crazy after what he's already been through, but it's possible that a narrow passage could have developed since his surgery, sometimes caused by scar tissue. We'll start with the simple tests and go from there.

Overall, Luke looks content and rests comfortably. He isn't quite as 'bronze' or 'copper' colored, which is nice. He still has good awake time where he's calmly looking around and he does get agitated at the appropriate times, like when he's being messed with. We're holding him more often now and I manage his wires pretty easily now and just take him in and out of his bed as I like.
As always, we'll keep you posted and we'll have his latest statistics posted on Monday.
Melinda

P.S.

This picture was taken by my sister Melissa earlier this week.

Thurs. Oct. 11th

I got to spend a lot of time with Luke today and it was WONDERFUL! He had a great day. He had one big desat spell when I was there and the few others he had, he resolved on his own. Which is a sign that he's gaining a little strength. The doctors have decided that Luke is okay with me having dairy and have told me not to worry about cutting it out of my diet. Yippee, I can have ice cream again!!
They did start Luke on Zantac today for his reflux. They will see how he does on it.
Another thing that they are going to start doing is fortifying Luke's milk with the fatty part of my breast milk. This will add extra calories to his milk without introducing something foreign. They do this when a baby has a sensitive tummy and needs more calories, which is what Luke has and needs. They will suction off the fatty part of the milk that settles at the top and add it to his feed. The part they don't use can be frozen and used later on.
Part of being in the NICU is also being exposed to other babies and families that are going through a lot too. Some have major life changing/altering conditions. We've come to know a few of these babies and it's scary and nerve wracking knowing what they are dealing with, sometimes I feel thankful (that Luke is doing so well comparatively) and sometimes it breaks my heart. All I know is that each baby in the NICU needs our prayers. Which, I can't thank you enough for yours.
Melinda

Wed. Oct. 10th

Luke had a pretty good day today. He ate well with his daddy this morning from the bottle. I again couldn't be with him today, but I am feeling better and will be able to see him tomorrow (I can't wait!!!). Luke did get held today today by close friends and family, which is comforting to me.
The loom of Luke needing a blood transfusion is on hold. His doctor would like to see Luke continue to make cells on his own regardless how slow he is doing it. If Luke receives a transfusion it could signal his body that he has enough blood and doesn't need to produce more, causing him to make even slower progress. As of right now, it's on hold and they will re-check his blood count on Monday. He also will be meeting with his GI doctor in regards to his acid reflux. He will check and see if his reflux is bad enough to warrant medicine. Less reflux episodes could help reduce his desat spells, which would be better for Luke. It is typical that preemies have more reflux.
I am looking forward to seeing Luke tomorrow and holding him a lot!!
Melinda

Tues. Oct. 9th

Luke is doing well today. I couldn't visit him today because I am feeling like I am coming down with something. Hopefully it is nothing and I feel better tomorrow. He did get some great holding time in today from my sister Melissa and his Godmother Kathy. It's nice that other people can hold him, especially when I can't be there. The nurse did put the phone up to Luke's ear so I could tell him how much I love him.
Jeremy fed Luke this morning and he took a small amount. He's been more tired the last few days, mainly because he's anemic. He still is taking the iron supplement and he is reproducing cells, just not quite as fast as his body needs. We are looking at possibly another transfusion for him sometime soon. We are hoping we can work it out that he can use his daddy's blood again.
Luke also is continuing with those desat spells, which are partially because of his anemic state and also because of his reflux. They may start him on reflux meds. to see if it makes a difference. I have also stopped having dairy in my diet to see if that makes any changes for Luke too.
We appreciate all your prayers and support.
Melinda

Mon. Oct. 8th

Luke's latest weekly statistics:
17.72" Long
5lbs 9oz

No real changes for Luke today. He is still having desat (low oxygen saturation) spells, but they think as he gets bigger they will go away. He just needs more growth, which he's taking his time with. We're going to keep on with the same food for him (breast milk with added nutrition) for now. They did add a little iron recently since he is still anemic.

He had an eye exam today. He'll have another follow-up next week to make certain everything is okay.

Overall he looks good and he had some great awake time yesterday with some good nursing and he ate pretty well this a.m from the bottle with his daddy. He was pretty tired today having the eye exam.
Melinda

Sat. Oct. 6th

Luke is doing pretty good. He is down to 200 liters on his oxygen flow, which is great progress. Still the same feeds. On Monday they will try and introduce a different type of food, just a little bit in with his regular breast milk food to add extra nutrition. They've been doing this, but this new kind has more calories. We want him to plump up. We'll see how he does with it and if he tolerates it well, they will add more gradually. He seems to know when something new is being introduced and reacts to it, so we have to sneak it by him slowly.
Luke and I had some great cuddle time yesterday. He just loves laying on me, listening to my heartbeat. Afterwards he was awake for a little while and just stared at me as I talked to him. I also took Bryan up the other day with me and Bryan was very cute with him. He likes to poke a lot, but is very soft with him. He talks to him too and it's really cute.
Melinda

Thurs. Oct. 4th

Luke has been doing pretty good the last few days. We've decided to go to a continuous feed for him. This is helping his tummy not get as full, preventing it from pushing into his lungs, making it easier for him to breath, which has controlled his desats more. We're still working on his bottle and nursing feeds too, but the continuous feeds are helping him not work as hard with his breathing, helping him save energy for growth. This is also helping ween him down a bit on his oxygen, which is another step in the right direction. The continuous feeds also are good to help keep up a full feed for him, which with a full feed he can have his medications added to his food. This keeps him IV free, which of course is wonderful for him not having to be poked. As he gets a little more growth and strength, he'll be moved back to the full feeds every 3 hours.
Luke had a follow-up head Ultrasound yesterday and it looked good, there is nothing concerning, which is good news.
My apologies for not writing the last few days. I've been a little worn out, but back into the swing of things now.
Melinda

Mon. Oct. 1st

Luke had a great session of nursing today and his other 2 bottle feeds are doing good. Soon they will be adding another bottle feed. He still drops in his oxygen level (desats) when he is at a full feed, but typical with the amount of room he has between his lungs and a full tummy. He has had some reflux too, so we are keeping a close eye on that.

He had his weekly statistics last night:
5lbs 6oz.
He's just a tad over 17" long

I want to also share a very neat and inspiring blog written by Luke's Godfather called "The Joyful Mysteries According to Luke", you can check it out at: http://www.davidoforegon.blogspot.com/
I would like to also point out that he wrote a blog called "Evangelium Lux" shortly after Luke was born and you can also read that blog on his blog page.
Both are amazing reads and I think you will agree that David is not only faith inspiring, but an excellent writer. As Luke's proud parents, we found his writings hopeful, inspiring and a definite reminder of God's grace and love.
Melinda

Sun. Sept. 30th

Luke was really worn out yesterday due to the big day he had the day before with making it thorough a full bottle feed and starting to get the hang of nursing. I couldn't even wake him long enough to get him to nurse, so we just had several hours of cuddle time instead. He also looked more yellowish due to his liver still recovering. It was refreshing today to see him look a little better and I was able to wake him up to nurse for quite awhile. He did very good. I am impressed with how much progress he is making with his feeds. He started on vitamins yesterday, they are vitamins that will help his liver recover and give him a little boost all over. One of his nurses actually tasted them herself before giving them to him, she said they were pretty yummy.
Tomorrow Luke will have lab work done to check and see where his liver levels are, plus I'll have a new update for his height and weight.
Thank you again for all your prayers that are carrying us through.
Melinda

Fri. Sept. 28th

This morning Luke took a full bottle feeding with Jeremy. He did very well!! He was all tuckered out afterwards too. He still was pretty tired when I saw him later this morning. I was able to get him wide awake for his 3pm feeding and he nursed for a little while. A big improvement and we'll keep inching forward with his feedings. He'll gradually have more and more bottle feedings as long as he does well and I'll keep nursing him once a day and gradually build up that too (this takes more effort and energy for him).
His x-rays today looked fine. Nothing alarming, he still has a little fluid on his lungs, which is normal, but it was good that they didn't see anything abnormal.
Melinda

Thurs. Sept. 27th

Luke is continuing to do well with his bottle feedings. Jeremy feeds him at 6am and today he's almost up to 1/2 a feed, which is good progress. I nurse him once a day, he's still getting familiar with the idea, it will take some time. Right now we only do each of these things once a day, it's tiring for him and we want him to practice this, but not use too much energy practicing, so he'll build up more strength and eventually do more. His feeds with his feeding tube are doing well. He's tolerating them well. He does occasionally have a "desat" (low oxygen level) when he's at the end of his feed, since his full tummy pushes on his lungs and makes it a little difficult to take a full breath. That will change as he gets bigger, eventually there will be more room and this is nothing to worry about.
Luke had an eye exam yesterday, a follow-up to one he had a few weeks ago, he'll have another one in two more weeks to make certain they are developing well.
He has good periods of awake time, he looks around a lot and he always finds me when I am talking to him. The nurses say that good calm awake time is a good sign that his stress level is low, he's not overstimulated by his environment and most importantly that he's comfortable and content. He cries at the appropriate times (when they poke at him).
I am looking forward to seeing him tomorrow.
Melinda

Breaking News!

We have breaking news...Luke has officially moved from the Intensive Care Unit to the Intermediate Care Unit. Jeremy and I are THRILLED! It's another step towards home. This unit is right next to the other unit, so we can still check in on the babies we've been following along. This morning Jeremy fed Luke his first bottle feed and Luke was able to take aprox. 1/4 of his food this way. Pretty good for his first time with a bottle. I am continuing to work on nursing with him, but that takes some time, as nursing takes more strength.
We are just very pleased with his move.
Melinda

Mon. Sept. 24th Picture attached

Luke had another great day today. He had his PIC line removed today, which means he is officially IV free! He is also on a smaller Nasal Cannula, which is the next step to not needing oxygen support. He is also working on bottle and nursing feeds. Starting tomorrow Jeremy will work with him in the morning at his 6am feed and I will work on nursing when I am up there during the day. It will be a slow process, but on the road to helping him get stronger, so he can eventually not have the feeding tube in his mouth.

Here are his updated statistics:

5lbs 2.5oz.

17" long

8 weeks old and 34 weeks gestational age

Thank you for all your support and prayers!

Melinda

Sun. Sept. 23rd.

Luke continues to do well with his food, so well that he is up to a full feed. He is officially off of the TPN (nutritional fluids), which is wonderful that he doesn't need them anymore.
I visited Luke with my parents last night, I held him the whole time and we had a nice visit. Luke opened his eyes for a bit to say hello to my parents.
Today he opened his eyes and was looking around a lot more! It was wonderful to see his eyes for so long and see him respond to my voice. Today we brought Bryan with us and he enjoyed the visit too, I could tell that there was a little jealousy when I held Luke, Bryan didn't know what to think of that. He liked patting Luke, holding his hand and blowing him kisses.
I also started working a little bit with nursing today with Luke, which we have a road ahead on that for him, but he is getting old enough to start building up strength and familiarity with that department. It was wonderful for both of us.

Luke is 2 months old and 34 weeks gestational age now, hard to believe 2 months has gone by already.

Melinda

Fri. Sept. 21st

Luke gets to eat more today. In fact he should be at a full feed by tomorrow. He is doing really well eating. He's passing is food well now and he is really content finally having food in his tummy. He's also doing well with less oxygen flow.
Luke and I met with an Occupational Therapist (basically a physical therapist) to asses his movements. Since he normally would be in the fetal position in my womb his muscle tone is a little different being outside the womb. The therapist checked out all his major muscle groups. Overall he did okay, but he does need some work getting better tummy muscles and neck muscles. There are some simple movements we can do when we change his diaper and when we hold him that he doesn't even know we are doing that will help him. He'll have his muscles checked once or twice a week and we'll follow-up a few months down the road to see how he's doing.
Luke still is retaining some fluid, so he had blood taken today to check a few things out to see what could be causing the excessive fluid. Turns out nothing is wrong, it's just extra fluid he needs to pass and he will pass it when he is on full feeds for a bit.
Also, the best part about today's visit was Luke responding to my voice. He turned his head a bit when I was talking to him and when I put him back in his bed after holding him, he opened his eyes and studied my face. Both Jeremy and I can see him bonding more and more with us each day. It is very nice for the two of us.
We are looking forward to taking Bryan up for a visit on Sunday.
One more piece of good news is Luke passed the 5lb barrier. He is 5lbs 1oz today, some is still a bit of fluid, but it is still great to hear!
Melinda

Thurs. Sept. 20th

Another great day for Luke. He's liking his food and it's settling well with him. His tummy looked pretty good too. Today they turned down his oxygen one more level and he's doing fine on the lower level. He looks more content now too. I held him for several hours today, the longest stretch we've had yet and he loved it (so did I), he sprawled out on me and just looked so peaceful. After he was back in his bed I changed his diaper and put a little outfit on him. He looked very handsome. After a bit he opened his eyes and was looking around. He stared at me for a long time. It was a very special moment.
Luke had a visitor today, my walking partner and good friend Debbi visited him for the first time, she also thought he is a handsome little guy.
Melinda

Wed. Sept. 19

Luke is doing very well so far with his food. They increased it a little yesterday and a little bit again today, inching his way up to full feeds. We are anxious for him to get to a full feed because he really needs to get off the TPN (which are his nutritional fluids). This fluid is great and helpful, but it is also hard on his liver. If he keeps up with the increase in his food, he should be up to a full feed early next week and off the TPN. He has started to pass a little bit of his food, which is great, everything is working smoother.
I've been able to hold Luke a lot and we are both happy about that. Jeremy goes in really early in the morning and holds Luke. We both do Kangaroo care (skin to skin contact with Luke), it is helpful to his growth and helps with bonding and security for him. Plus we like it too. Luke is much better at regulating his temperature now too, which means we can hold him for longer stretches of time, which is wonderful.
Also, Luke is almost fully recovered from his surgery, his wounds are healing nicely and he doesn't need anymore pain medications. He really has the hands of our Lord on him. What a miracle and blessing he is to us.
Melinda

Luke has "real" food again today.

Today 2 great things happened for Luke. First he was able to be moved off the ventilator and was able to go back to the Nasal Cannula with ease and he only needs a little oxygen assistance (he's a great breather). He started to pull the tube out on his own yesterday, he's such a feisty guy! Second he got to have a little breast milk today through his feeding tube. They are starting him on just a tiny amount to see how he does and he's doing well so far. We just pray his feeds go smoother this time for him. Well I guess I can say there were 3 things, I got to hold him again today, I hadn't held him since his surgery day (Thursday), so it was extra special for both him and I. He's starting to suck well with a pacifier, so before long we'll start working on nursing and bottle feeds, it takes a bit for the coordination and the strength to develop, but he's getting closer.

Luke's latest statistics (remember they check each Sunday night):
4lbs 6.5oz.
16.5" & 1cm long
7 weeks old & 33 weeks gestational age

He's growing at a good steady rate.

Thank you again for all those prayers, they are giving Luke and our family strength to endure this challenging time.
Melinda

Sat. Sept. 15th

I visited Luke today with Bryan. Bryan brought Luke a little stuffed animal (a little elephant) to keep him company. Bryan was getting a kick out touching Luke's hands. He patted Luke's head before we left. I did get to hold Luke while his bedding was changed, he had wet through all his bedding, which was a good thing. He hadn't wet much because the surgery causes babies to be in a little bit of shock and their veins won't hold fluids like they should and to keep his blood pressure up, more fluids have to be given, which creates excessive amounts of fluid. As he starts to feel better letting out all that extra fluid is a good thing.
He was more awake today, opening his eyes a lot and moving around more. He looked comfortable. My mom recently asked "what did they use to close up his wounds?" They use a surgical glue, it's basically a much stronger version to liquid bandage. As his wounds heal, it will disappear.
Luke is still on the ventilator and they haven't fed him yet. Luke is taking a little bit more time then they thought to be ready for these steps, but it's not concerning and the doctors don't want to rush him. Which makes both Jeremy and I more relieved that they are letting Luke recover at his own pace.
Melinda

Fri. Sept. 14th

Luke is recovering from his surgery pretty well, he has shown signs of discomfort (which is normal), so they are keeping the morphine up a little longer which slows the body down. He's still on the ventilator, but will most likely be off of it tomorrow. He may have a little test drive of food tomorrow too. Overall he looks good and comfortable. I have gotten very used to his round belly and it now looks soft and flat. It's nice to see it look better.
Luke had a few special visitors today, Sister Therese and Sister Ann Marie from Our Lady of Peace Retreat visited him this evening. I had a nice visit with them and appreciated the special prayers they said for our Luke.
Thank you again for each of your prayers and good thoughts for our littlest boy.
Melinda

Thurs. Sept. 13th, Luke's surgery

Luke's surgery went well today. They did find a spot in his intestine that had adhered to the intestinal wall and it caused a kink like area that was causing the slowing of his digestion. They were able to fix that section and check the rest of the intestine for any other issues and all looked good. Luke had 3 tiny holes and 1 one inch incision. One of the tiny holes is through his belly button, so it's not noticeable. Luke should be able to eat in the next day or two since they didn't have to cut any part of the intestine.
Luke's special blessing by Fr. Steve Geer and along with all your prayers is what has helped get Luke through this tough day. I think Jeremy and I will be able to sleep a little better tonight.
Melinda

Wed. Sept. 12th

We received the bowel biopsy results today and they are negative, Luke doesn't have a chromosomal defect in his bowel. Which now means all non-surgical options to figure out his intestinal issues have been exhausted. The only option left is to have the surgery. He will have a small incision in his belly button and 2 or 3 more tiny cuts to look and hopefully fix his intestine. It is scheduled for tomorrow (Thursday) at 2:30pm. It will take aprox. 1-2hrs. Jeremy and I will be at the hospital most of the day. We hate to see our little Luke go through this, but we also know it's the last result to figure out what is going on with his intestines and he needs to start eating pretty soon. He has nutritional fluids he receives, but he needs food to help his body thrive.
We have faith that Luke's wonderful Guardian Angel will be watching closely over him.

We appreciate your continual prayers through this stressful time.
Melinda

Tues. Sept. 11th

We did hear the test results today. They couldn't see anything abnormal, which is making his intestinal problem unclear. Jeremy and I were able to meet with the surgeon and his team today. There are a few options and one was done today, a very simple biopsy of the bowel. Which the results will be in Thursday morning. The biopsy will show if there is any chromosomal defects to the bowel, which is unlikely, but it's safer to rule this out before the next step which is surgery. It would be arthroscopic surgery, going through his belly button and a few other tiny spots to look at the intestines. Apparently the dye test can't show all parts of the intestine and this would allow the whole intestine to be seen. If there is any abnormality, then it can be removed right then. It would take a few hours.
It scares us that this may have to happen Thursday, but we know he is in good hands and that the hands of the Lord are on him.
We enjoyed seeing Luke together today and we're grateful that Luke's Godmother Kathy Jackson was available on a whim to help us with Bryan. She may be Luke's Godmother, but she is an angel to us.
We'll keep you posted.
Melinda

Mon. Sept. 10th

We didn't hear the test results today, so we will hear tomorrow. I visited Luke at 8pm tonight and he just had his last x-ray for the day. I stayed away today knowing he would be a busy guy and knowing I could hold him tonight uninterrupted (which was wonderful!). I got to dress him in a little outfit tonight too. He opened his eyes and was just staring at me, I got real close to his face (knowing he can't see very far yet) and said, "can you see the face of the person who only talks sweet and doesn't poke at you?" I swear he gave a little smirk.

Latest statistics:
4lbs 3oz. 16.5"

I thought he would break the 4lb barrier this week. Now we just have to get this little guy eating.
Melinda

Sunday Sept. 9th

Luke had another good day today. I held him for awhile today and it was pretty quiet in the NICU, I could of fallen asleep. Luke surprised me again today, he lifted his head up and turned it the other direction, he did this the other day with me too. I guess he's got a favorite side already.
Tomorrow is a big day for Luke, he will have the upper GI test. It is another dye test. They follow the dye as he digests it with a sequence of periodic x-rays. If he has a narrow passage in his intestines it's possible the dye will help widen it, which would be great, no surgery to correct it. Depending on how long it takes for him to digest it, we may not find out the results until Tuesday.
Althouh it's hard for Jeremy and I to see Luke go through so much testing, we are glad that the doctors are taking this precaution before feeding him again. His tummy is still distended and if he's fed and the food doesn't pass he becomes really uncomfortable. Plus his tummy puffs up even more, which pushes on his lungs and he ends up needing a bit more oxygen. One thing effects the other...
We'll report what the test results when we find out and stay tuned for his latest statistics, they check these each Sunday night.
Hope everyone's had a nice Sunday.
Melinda

Sat. Sept. 8th.

Yesterday I was pretty symptom free and was able to see Luke. I got to hold him for a really long time, which was wonderful (I missed him so much!). We cuddled up skin to skin, it was excellent! He looks really good and especially without the CPAP on, I could see his whole face and head, which are beautiful! He's a handsome little man. He also had on his first outfit, the nurse that watched him in the night put a little one piece outfit on him, he looked adorable.
He also had a special visitor, Fr. Pat McNamee, he came to see Luke for the first time. We talked about where we started this journey and where we are today, following Luke's progress. He received a special prayer and blessing from Fr. Pat.

Today, Jeremy, Bryan and I visited Luke. Bryan stared at Luke and was interested, but pushing buttons was a little more interesting than Luke. Bryan enjoyed the purple glove the nurse gave him and we made purple glove puppets. A little entertainment. I changed Luke's diaper and checked his temp. Then Jeremy held him (skin to skin) and Luke just snuggled right in. Bryan and I went for a walk while they took a little nap together. Bryan blew Luke kisses when it was time to leave.

They are holding off on giving Luke food still. The doctors have decided they will do the upper GI test on Monday. It's another dye test. They will follow the dye as he digests it to see how he moves food through, which will help them see where the hang up is, if there is one. If things look good, they will start up food again.

I recently had someone ask, "how do you handle this rough journey with your baby". My answer, "I hold His hand and He guides me through each day." We are never alone and we are never given more than we can handle. We just do.

Thurs. Sept. 6th Picture attached

Once again today Jeremy and I couldn't visit Luke due to our colds, but I think I will be able to tomorrow (I can hardly contain myself). Luke's Godmother took this picture of him today and I thought I would share what she had to say:

He's just beautiful, but not just for the obvious reasons - he's beautiful because of who he is, because he comes from love, because of all the people who don't even know him yet who love him so much, because of all the saints and angels who constantly surround him and offer their strength and their prayers, because he makes us all want to be better people and make this world a better place, because he is the highlight of our day and brings us such peace, and obviously because we can see a little glimpse of God when we look at him!

Needless to say, he has wonderful Godparents!

Melinda

Wed. Sept. 5th

We have good news to report today. Luke graduated from his CPAP to the Nasal Cannula. The Nasal Cannula provides extra oxygen without the extra pressure that the CPAP did. The Nasal Cannula is smaller, softer and less obtrusive to his face and especially his little nose. Luke had an attempt at this a few weeks ago, but didn't do very well, so it is great that he can handle this now, it is a big improvement. This also means that I can hold him skin to skin with ease. The CPAP was always in the way before, so this will be VERY nice for both of us.
Since Jeremy and I still have cold symptoms we couldn't be there to witness the switch over. However we did receive some nice reports from his Godmother with how nice it is to see his whole face and head. That's right, no more hat is needed to hold his air tubes in place. His hat was always big and would cover part of his face. Apparently Luke has been touching his face a lot today and tonight with the change.
I can't wait to see him and especially hold him without all the extra gear on.
Melinda

Tuesday Sept. 4

Today Luke had a lower intestinal dye test. Good news that no blockages or narrowing of the intestines were found. His doctor is going to go ahead with small feedings to see how he does. If he continues to have issues, they will do another test of the stomach and upper intestines.

His latest statistics are (they check each Sunday night):

3lbs. 8.5oz and 16.5"

Jeremy and I came down with cold symptoms yesterday and are not allowed in the NICU until we are "symptom" free. It's an awful feeling not being able to see Luke, but luckily we can call often, which helps a little bit.

Many people have asked about Bryan and he is doing really well through all this. He's a real trooper. He sees Luke about once a week. It's really cute when he blows him kisses. We talk with Bryan about Luke often and keep Luke in our bedtime prayers with Bryan. I have to say that it is nice to come home and give Bryan a big hug.

Melinda

Sunday's Visit

Today I visited Luke later in the afternoon. I changed his diaper and checked his temp. His tummy still looks "full", he has a lot of air they are trying to get him to pass from his last feedings. Which, they are going to do a dye test on Tuesday to see if he has any blockages or very narrow passages in his intestines, it's fairly common with preemies as young as he is to have intestinal issues. Luke had been a little extra squirmy on Thursday and Friday, but started to seem more restful Friday night, Saturday and I could see today too. He received a little extra blood on Friday night, which he received his daddy's blood this time, which was wonderful. It's normal for preemies to become anemic and need extra blood.
I sat and contained Luke with one hand on his head and one on his chest for about 45mins, a favorite calming effect for Luke. We also said our prayers. I was able to pump breast milk by his bedside today too, I prefer to do this as often as I can, since pumping right next to him helps develop antibodies in my milk for his environment. This can help him fight off 'bugs' in his environment. The NICU was very quiet today, compared to how busy it has been the last few weeks, the quietness was a welcoming change. Luke was also moved yesterday to a quieter corner, which is really nice. He seemed very content today, it was a wonderful visit.

Melinda