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