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

Luke's 1st Blog

This is Luke's very first blog. Although we've gone through a lot these last 5 weeks that Luke has been in the NICU at Emanuel Hospital, I won't recount everything, but thought I would mention a few things to help you know where we've been.

How Luke arrived:
I had no warning signs, but luckily had a regular doctor appt. scheduled for July 25th at 9:30 a.m. We brought Bryan with us, thinking it would be a routine appt. I mentioned to the doctor that I had not felt right that morning, kind of tired, but also just feeling like something wasn't right. I couldn't pinpoint anything, but just knew something wasn't right. Our doctor was going to send us home, but at the last moment decided to examine me just in case. She found I was 3cm dilated. She sent us to Emanuel right away, knowing they would be best equipped in case Luke arrived. By 11am I was 6cm dilated, leaking fluid and having regular contractions. I was started on magnesium to stop the labor, which it worked and it allowed the doctors to get 2 steroid shots in over a 48hr period to help Luke's lung's develop. The magnesium made all of my muscles go limp. I could barely move, hold the phone or a fork. It also made me really warm and sensitive to light. Our room was dark and cold, Jeremy said it was like a cave. Jeremy along with the nurses took excellent care of me. I seriously couldn't of done this without Jeremy.
Friday afternoon I was off the magnesium and started feeling a lot better pretty quickly, but we still knew Luke was on his way sometime in the near future. Which, later that night (early Saturday morning), I had a feeling that something was different. Luke had moved down and the doctors told me that he would be born soon. We started the labor process shortly after. I narrowly escaped having a c-section, in fact Luke was born on the operating table, the doctor had me push one more time and he came out. Luke had a little cry when he came out. Which was a great sign.
Jeremy and I cried and cried with many emotions. We visited Luke while they were getting him stabilized. He was small, but he looked really good. His color was a healthy pink and he looked beautiful and perfect. We could see right away that Luke was very strong and feisty. We knew the road ahead for Luke in the NICU would be a long one, but we could see that Luke would be just fine.

After his arrival:
We had Luke baptized around noon the same day by Fr. Tom McCarthy from St. Francis in Sherwood. Luke's Godparents, David and Kathy Jackson, Jeremy and I were all present for the beautiful baptism Fr. Tom performed. We showed Luke off to several family and friends throughout the day. Very proud of our little miracle.
This was the beginning of the weeks to follow. Which, mostly Luke has done very well, he did have a bought of NEC, a scary intestinal infection, but has fought it off. He's growing and doing everything that he's suppose to be doing. He is 3lbs. 4oz and 15.5". Right now he's having start and stop feedings, it's a process to be able to get that tummy ready for food. Luke is still a feisty guy, he's great at pulling his CPAP (central positive air pressure) tube out of his nose. He loves laying on his tummy and of course settles in easily when Jeremy or I hold him. We are very proud of our littlest man.

Melinda