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