1yr Check Up

Luke went for his 1yr check up the other day.  He is now up to 15 lbs 3 oz and is 26 in long.  He is getting to be a big boy.  The doctor told us that he could start table foods.  Today we tried giving him some puffs.  He liked playing with them, but once we put one in his mouth he wasn't liking it.  We will try something else tomorrow.  Also, during this doctor visit he got his second dose of the flu shot and his Synagis shot ( protects against RSV).  They had to give the Synagis in two shots so Luke had to get 3 shots total.  Needless to say he was not too thrilled, but he was a brave boy.

On Luke's birthday we had our friend, Dagmara, come and take some photos of him.  Here are a few of our favorites.

1 Year Later

It was one year ago today that our life changed forever in a very sudden, unexpected and ultimately wonderful way. Lucas Alexander Hemmer was born at 2:35pm at an extraordinarily tiny 12" and 1lb 5.9 oz. Nothing could have prepared us for everything we would go through between that day and now, but looking back, we have many amazing memories and the hard times, while not forgotten, are far overshadowed by the countless moments that filled our hearts with joy. Words can't really describe how blessed we are and how lucky we feel. We couldn't have done it without the amazing support from family, friends and even many good hearted people we barely knew.
It's hard to believe that a year has already gone by. Luke is doing extremely well and constantly surprises us with new faces, sounds or something he learned to do. He loves to crawl around, exploring every corner and everything he comes across and pulls himself to standing every chance he gets, usually followed by a soft plump onto his backside. It's amazing to watch him grow and it seems he gets bigger every day.
He still has his medicines for reflux, asthma-like symptoms and to continue to heal his lungs, but before long those will be distant memories as well. Everyone that sees him says how amazing he looks and you'd never know  he had such a rough start.

To commemorate Luke's first birthday, we put together a little photo and video collage of Luke's first year with us. We hope you enjoy it.

Luke's 1st Halloween

When Luke was a baby he made such funny sounds and we would call him "baby dragon".  So it was only fitting that we dressed him up as a dragon for his first Halloween.  Her are a few pics of him.  He didn't enjoy the hood part very much because it kept covering his eyes.

Almost 1 year!!

In a few short weeks, Luke will be turning 1 year old already. It's sort of mind boggling. He's getting big so quickly and he's doing new things all the time. Since the last update, he has begun the early stages of crawling. He does his own version of the "army crawl" and will get up on his knees, but hasn't quite figured out how to move forward once he's on them. Soon enough we'll be chasing him around. We also think he'll be getting his first tooth soon as he has started doing a really funny thing where he opens and closes his mouth over and over, sort of like he's chewing gum. We'll try to post some video of it soon.
That's it for now. We'll post some new photos and maybe some video on his birthday so check back soon!

Laugh Out Loud

Luke is doing new things each and everyday.  He has been laughing for awhile now, but never like this. Watch the video to see Luke giggling so loud with the help of daddy.

Trust Your Instincts

So the cough that Luke had sounded like more than just a cough.  We decided to contact his lung specialist who squeezed us into an appointment.  They did a chest x-ray on him.  His doctor said that he had an inflammation in his lungs and his cold triggered an asthmatic reaction.  They gave him a steroid shot which helped him right away.  He was put on an inhaler to open up his airway.  We go back at the end of October to have him rechecked.  He sounds good now.

Under the Weather

So it was inevitable that Luke would eventually get sick.  This past week not only was Luke sick, but also John. They both were sneezing, coughing, and had runny, congested noses.  Not to mention fevers.  For his first time being sick Luke did pretty well.  He kept up with his eating and overall was still a pretty happy baby.  He still has a cough that sounds pretty bad, but we are keeping an eye on him.. Doctor says give it a few more days to clear up.

Today we had an eye appointment.  This was our first one with the general ophthalmologist since we were released from seeing his specialist.  It was interesting to see how they tested his vision.  The doctor would hold up different lenses as well as a light up to each eye and based on a reflex she would see is how they would determine how well he was seeing.  She said that Luke is near sighted in one eye and far sighted in the other.  She said if you don't do anything to correct it eventually the brain will choose one eye to use and the other can become a lazy eye.  Therefore, she said he will need glasses.  We go back in a month to recheck his eyes and she said he may get them as soon as then.  I can't imagine our little baby with glasses.  We are hoping that he won't need them that soon.  It will be interesting to see how he will keep them on.  We will let you all know how the next appointment goes.

Here Comes the Airplane

Luke, who is now 9 months old as of August 26th, is enjoying his introduction to the many different types of fruits and veggies.  So far he has taken pears, peaches, apples, bananas, carrots, sweet potatoes, and peas.  The only one he has not liked is the peas.  He let us know right away that he didn't care for them and refused to open up for another bite.  As mentioned last time he has started his physical therapy to help with his gross motor skills.  It is amazing just to see how much he changes from week to week.  He has been able to roll from his belly to his back.  We often see this when he wants to be done with tummy time.  However, just the other day he was able to go from his back to his belly.  He is also doing better in the sitting position.  He can hold himself there for awhile, but once the momentum gets going watch out before he takes a nose dive.


Today Luke had a follow up with the cardiologist and it was all great news! All the tests looked ok and the doctor said we won't have to come back. Always good to hear.


Finally, we think Luke might be ready to write his own blog entries. Watch the video and let us know what you think. ;)

July-August 2010

Hey everyone! So, so sorry it's been so long since we updated again. It's been a busy summer, but it's no excuse as we know that there are many of you out there that supported us and Luke since the beginning that still check here now and again looking for an update and (I know we've said this before), but we're going to try and update more regularly!

Luke is 13.4lbs now and is doing extremely well. We recently visited the lung specialist and he gave us clearance to end the apnea monitor (woo-hoo!) which is a great milestone. We also recently took Luke to see an ENT (Ear/Nose/Throat) specialist to take a look at his vocal cords and they said that they don't see any permanent damage, but they did see some inflammation (which explains his still pretty quiet cry and raspy voice). They said it could be due to the breathing tube being in for so long, or it could be because of his reflux. Luckily, the tube is obviously long gone and the reflux should hopefully go away before long as well. He's still on one medicine for his reflux plus they added a new one to reduce the acidity in his stomach to reduce the irritation in his esophagus caused by the reflux, both of which should help.

Other than that, he's acting and looking like a normal, healthy baby boy and is growing quickly...especially his appetite. In the last few weeks, he has started eating rice cereal and fruit (just pears so far, see photos below) and still loves a good bottle of formula every few hours. He's definitely starting to find his voice and recently learned how to make the "raspberry/motorboat" sound with his mouth, which he'll do for 10 minutes at a time when he gets going with it.

He's also getting better and better with his tummy time and sitting up and will be getting a little extra help from a physical therapist that will be coming to see him as part of a state program we're able to take part in because of his extreme prematurity.

Here are some recent photos. Enjoy and visit again soon as we'll post more often! Thanks again for all of your love and support since the very beginning.

It has been way to long

  It has been over a month since our last entry.  We are sorry and will try to keep up with the blog more regularly. Luke has reached the 10 lb mark.  We owe this to his good eating habits.  The doctor told us he is on the high end for what he is taking and to not go up on his feeds for a little while.  We thought since he is behind on weight to let him eat as much as he wants.  I guess we were wrong.  He takes good naps during the day and at night he will occasionally sleep all the way through till morning.  He is in his own room now and seems to really enjoy his crib.  Luke is doing so many new things.  He loves to smile and often gives us a big open mouth smile. We are still waiting to hear his little laugh.  He has started mimicking us by blowing bubbles with his mouth.  It is too cute, but sometimes he turns into a bubble machine.  He likes to interlock his hands together, but most of the time you can find him with one or both in his mouth.

We had a follow up appointment with his lung specialist the other day.  He continues to say that Luke's lungs sound great.  We are happy to say that we have been able to get rid of two of the medicines he was on.  However, they still would like him to keep on the apnea monitor for another 2 months until his next follow up.

    

May Doctor's Visits

We had a few doctor's visits this week. One to the pulmonary (lung) specialist and one to his regular pediatrician. Both had lots of good news. Luke is doing very well. He's up to 7lbs 14oz. We got the "green light" to start weaning him off of one of his medicine's as well as the potassium supplement that goes along with it. A few more weeks and he should be off completely.
He's still on Reglan for his reflux and we had to up the dose due to his weight gain, but hopefully in a few more months that will be under control as well.
We're getting a lot more smiles these days from him too, hopefully we can capture one on camera soon.

The Latest from the Homefront

Hey everyone! First we wanted to say sorry to all of you who have been repeatedly checking for updates and obviously haven't seen any in awhile. We honestly didn't think many people were checking here anymore based on the lack of comments that were being left. BUT, we've been hearing that people are still checking soo.....

Luke is doing great! At his last doctor's appointment, he weighed 6.5lbs and is growing fast and has a ferocious appetite. He had another check at the eye doctor yesterday and everything looks great which we're very happy to hear. He's still off of the oxygen and when we go back to the lung specialist in early May, we're hoping to hear that we can start weaning him off of some of his medicines.

Here's some photos from the last few weeks:

4 months old!

It's hard to believe, but Luke is already 4 months old today! He might not look it just yet, but he is getting bigger. He's been eating like crazy and is doing really well. We have another follow up with his eye doctor on Monday and hopefully the news will be better this time around.
Here's a few more photos of Mr. Lucas.

Home Again

Luke's 2nd eye procedure went well. A lot less intense than the first time. We spent the night in the hospital just to be on the safe side, but we're back home and doing well. We have a follow up with the eye doctor on the 29th so he can make sure he's cleared up everything once and for all, so we'll keep our fingers crossed for that.
While in the hospital, he got weighed and we found out he's up to 5 lbs!! He's definitely starting to put on a little baby fat and his little squirrel cheeks are getting bigger.
Time is flying and we're doing well. We'll do our best to keep posting our progress at home.

A Little More Hospital Time Ahead

Today was Luke's follow up with his eye doctor and the news wasn't as good as we were hoping. His left eye looks like it's better, but the right eye needs a 2nd phase of laser treatment as it is not completely fixed. From what we're told, it will be a lot less treatment than what he had done last time, but the doctor feels it is necessary to completely repair the vessels and avoid any possible long term problems.
We'll find out a little more tomorrow, but the procedure is scheduled for Wednesday morning. With a little luck, he'll be out the same day. We'll need a few more thoughts and prayers from you all and we'll keep you posted on the results.

A Few Photos from Home

Hey everyone, here are a few quick photos as promised. We're busy here at home but doing well. Hope you all are too!

Settling In

Luke's first few days at home with us have been great. He's sleeping a lot more during the night than either of us thought he would, which has made it easier on us. He's doing all the usual baby stuff...eating, poopin', sleeping, etc. We put on his oxygen when he's eating and the heart rate and breathing monitor has given us peace of mind as well.
This morning we went to his first appointment with his pediatrician who said that he looks great considering everything he's been through. He's up to 4lbs 8oz now and continuing to grow. Before we know it, he'll be at the 5lb mark.
We've been pretty busy getting adjusted so I don't have many photos to post just yet, but I'll try to get some up in the next day or two. Thanks for being patient. ;)

One Journey Ends, Another Begins

Hey everyone! As many of you have probably already heard...LUKE IS HOME!!!!!

 

The day finally came yesterday and we were able to bring our boy home after exactly 14 weeks in the NICU. We can't believe it. We couldn't have done it without all of your love and support. It was a crazy day and Luke, who slept in the car the whole way home is doing great. (Here's a photo of him at the hospital getting ready to leave...by what else, sleeping.)

The last few days in the NICU were hectic, exciting and sad. All of the nurses there have become like family and we'll miss them all. We asked them to keep in touch and let them know they can come by and visit him and we'll bring him back there to visit as well. (Here's Luke saying goodbye to one of his nurses, Dorothy and giving her a round of applause for the great job she did.)





So now we begin our new journey as parents at HOME and the real chaos begins. We're confident that we'll do just fine and Luke will adjust quickly to his new surroundings. He is on a portable monitor and we have oxygen tanks available if he needs it. Right now we're just putting it on him when he eats, because it seems to help him.
We're going to continue to post to the blog and give updates on how he's doing here at home and try to put up more pictures, which we know everyone likes.
Thanks again for all of your support. You all are wonderful!!

Waiting for the Word

Our "Care by Parent" experience with Luke yesterday was great! It definitely helped us feel more comfortable with giving him his medicines and start learning his cues better. The monitor they had him on was a little on the fritz, which was frustrating at times, but not a huge deal. He also showed us that while he doesn't need oxygen around the clock, he still needs a little extra puff now and then to keep him from getting exhausted.
That's what we're waiting on the final word for this morning. We're supposed to be getting a call from the company that comes out and sets up the oxygen tank and monitor and we're still waiting to hear from the doctors on if Luke will be fully released today. We should know more soon and as soon as we can, we'll let everyone know.

P.S. Sorry for the lack of photo updates lately...it's been very busy and I just need to transfer the pics off of the camera so I can post them. We'll try and get them up soon.

Oh, So Close

Just a few more steps! We went in this morning not knowing if we'd be taking him home tonight, Tuesday or ???. It turned out to be "???", which means probably Wednesday.
The reason they pushed it out another day is that he's been doing better with feeding without the assistance of oxygen. What they hope is that he'll continue to show that he can eat without any oxygen and not de-sat for the next 48 hours and if so, they won't send him home with us on oxygen. We will probably still have a monitor for him, just to be safe, but it would be nice if we didn't need to worry about the oxygen tank.
He also got his "Synergis" shot today, which is a form of booster shot that helps his body fight RSV, which for most adults is just a cold, but for micro-preemies like Luke, it's a lot worse. The shot does not completely immunize him, but it helps him fight it and lessens the severity if he ever does get it.
On Tuesday, we'll be doing a 12-hour "Care by Parent", which means it's just us and Luke in a small hospital room and it's up to us to do all the work. We feel pretty confident with him already, but we feel it's a good practice run before he comes home and we can become more familiar with giving him all of the medications and vitamins he still needs to be given.
We'll let you know how it goes and if Wednesday does become the magic day.

Doing Better

It's now been about 2 days since Luke had his eye procedure and he's doing much better. He was still pretty out of it most of the day on Friday while his mom sat by his bedside all day and it wasn't until a little later at night, once Stacy had left that he decided to wake up and pull out his own breathing tube. Typical Luke, doing things on his own, when he wants.
He's back on full feedings and his eyes look much better than they did right after the procedure. A lot less red and puffy. Best of all, not only is he off of the ventilator again, but they've actually been able to leave his canula off between feedings so there is a good chance that he might not need to come home on oxygen, but we'll have to see if he can keep it up for the next 48 hours or so.
We're still looking at possibly Monday or Tuesday for Luke to come home and we'll probably have him on monitor when he's home, just for extra peace of mind and caution.
Just a few more days! We'll keep you all posted.

Eye Procedure (Update)

As of 9:40pm, Luke has begun his recovery from his corrective eye procedure. The surgeon said it went well and that we'll just have a follow up appointment with him in 2 weeks to make sure everything is progressing. Luke is still sedated and probably won't start to come around until early morning on Friday. He's still on the breathing tube and ventilator, but at low pressures and they hope that by late tomorrow afternoon he'll back back on his trusty canula/wall-air.
His little eyes are red and puffy which they said is normal, but it's still hard to look at him because he's gone through so much already and we hate to see him in any more pain or discomfort.
It was also strange being back in the same procedure room where they did his PDA valve surgery so many weeks ago. It seems like ages ago and that was the first time we were able to give him a little kiss on his head. It reminded us of how much he's gone through since then and just how strong he is.
It's tough, but we know he'll be much better in a few short days and will finally be able to come home with us.
Please keep him in your thoughts and prayers as always and we'll post updates as soon as we can. Thanks.

Eye Procedure

We found out this morning that Luke will need to have the corrective eye procedure done. It is scheduled for 5pm tonight. While we know that this will postpone him coming home to us for a few days, it's for his own good and we're hopeful the procedure will go well.
Please keep him in your thoughts and prayers and we'll let you know the results and details as we get them.

Sooner Than We Thought...?

Well, we received some news yesterday from the doctors. Depending on the results of Luke's eye exam on Thursday, he could possibly come home as early as Friday, but more likely will come home over the weekend!
Chances are he will be coming home on oxygen, which means we'll be given a monitor and a small portable oxygen tank and Luke will remain on the canula while at home and we'll continue to wean him off of it here. We'll have to go through a short training session on the equipment as well. Thursday night we'll be participating in an infant CPR training class and Friday night we'll probably be doing what they call "Care By Parent", which is where we spend the night at the hospital in a special room where we'll take care of him by ourselves without any nurse assistance (unless needed) as sort of a practice run before he comes home.
If the eye exam on Thursday ends up showing that his eyes have continued to get worse, there is a good chance he would end up having a procedure done on Friday to correct it and would remain in the NICU for a few more days as he recovers from it.
We'll keep you all posted. We can't believe we're so close! Thanks again everyone.

Bottles Only, Please

Saturday was a big day for Luke. First off, apparantly he decided he was done with his feeding tube and yanked it out by himself, which we were surprised to hear and happy as well because the nurses say that he's eating enough through his bottle feedings and so they won't be putting it back in unless he has a setback with his eating.
He's also off his caffeine supplement that were giving him which was helping with his occassional apnea. They'll monitor him for a few days to see if he can remain off of it without having any spells, but so far so good.
Lastly, he's up to 3lb 15oz and will get weighed again on Sunday night. He seems to be in one of his cruising stages again where he makes rapid progress so we'll hope that continues. One of his nurses mentioned to me yesterday that we'll probably need to bring in his car seat soon for the "car seat test", which is one of the final tests before going home to see if he can be comfortable enough without having any issues while sitting in it for 90 minutes. Either way, he's still going to need to be there until at least next Thursday when he has another follow up eye exam. Right now, his eyes and the oxygen are the last two hurdles before he can come home, so we'll see how he does this week. The finish line is almost within sight!

Inching Closer

Another week at the NICU is nearing its end and Luke is continuing to work towards overcoming his last few obstacles.
Today he had another eye exam and the doctor said he will continue to monitor it weekly. It did get a little worse from last week's examination, but we'll remain hopeful that it will flatten out and begin to regress back to normal without needing any intervention.
He's getting better and better with his bottle feedings and now with breastfeeding as well. In the last day or two, he's been able to get the majority of his feedings by bottle or mom and if he continues to do well and not require any supplemental feedings through his NG tube, they may be able to remove it soon.
Oxygen on the other hand is still a hurdle he needs to clear. Even though he's very close to being off it completely, he can't seem to be able to overcome the need for that last little puff of air. The pulmonary specialist saw him again today and will continue to monitor his progress to see if there anything else they can do to help him shake his dependence on the canula.
He's up to 3lb 11oz now so we're nearing the 4lb mark which will be another great milestone. He should get there quickly as his feedings are now up to 45ML's and he definitely lets us and his nurses know when he's hungry as his cry has a little more angst these days, which shows his lungs are healing nicely. The X-Ray they took today showed this as well.

Please keep praying as we head towards the finish line and as always, thank you all very much.

P.S. Sorry for the lack of updates this week!

A Little Elbow Room

Over the weekend, Luke earned himself a little extra room and was able to ditch his cramped isolette to a shiny new hospital crib. He's been doing well at maintaining his body temperature outside of the isolette, so it looks like he'll be able to stay in there. It's nice for Stacy and I, because it's a lot easier to pick him up to hold him and feed him without having to maneuver him out of the little isolette door. He also has a mobile we brought from home and a little musical turtle thing (from the hospital) that can give him a little entertainment too.
He's also continuing to learn how to bottle feed, but is still getting the hang of it. It's been hit or miss as sometimes he's been able to take his whole feeding and other times he only takes a few ML's before tiring out or just losing interest, in which case they just give him the rest through his NG (feeding) tube. With a little time, he'll get it all figured out and he'll be growing like a weed.

Getting Close...but a Little Ways to Go

Friday afternoon we had our family meeting update with Luke's doctor and it was mostly good news. He's getting very close on all of the things he needs to do to be ready to go home.

He's on VERY minimal oxygen support right now, although they did switch him yesterday from the "wall-air" canula back to the blended air, which they explained wasn't really a step back as much as just a side step. With the blended air, it's a lower % of oxygen vs. the "wall-air" and the flow he is on is minimal, much less than the 1.0 liter he was on last time on the blended.

He has to be able to take and handle full feedings from a bottle. He just started bottle feeding this past week and is still learning, but he's getting closer on that as well.

He can't be having any de-sat "spells", which have been less frequent in general lately and they think will start to go away completely.

His eyes are the last challenge. The eye doctor saw him on Thursday and said that he does show the usual progression that preemies often show that could require the laser eye procedure, but he's going to take a look again next week and watch it closely. With some luck it will just go back to normal and not require anything special.

The bottom line is they expect that he should be able to come home in 2-4 weeks...so it's definitely soon! We're excited and nervous all at the same time. It was good to hear those things, but then Luke wasn't having the best day after the meeting which kind of put a damper on it. We think he had a bellyache because he was crying when we were trying to feed him and the nurses said he was overdue for a poop. As of this morning (Saturday), he's doing a little better but we'll have to see how he does with the feedings today.

Bottom's Up

First off, our family meeting appointment that was supposed to happen on Tuesday was postponed to Friday due to the blizzard, so no news on that. But...
Today, Stacy and I had our first bottle feeding lesson with Luke and his specialists today. Feeding a baby a bottle never really looked to be that complicated and for most full-term babies, it's not, but with extreme preemies like Luke, there is a little more work involved.
Thankfully he's doing really well with it. We've got a smart boy on our hands. He's picking it up quickly and has been taking anywhere from 20 to 25ML's of his 34ML feedings the past two days by bottle. His real only problem is he's a fast eater and wants to drink it all at once and doesn't always remember to breathe once and awhile - which is where the lessons come in. Until he's bigger and gets better at it, we have to watch him carefully and do it in sort of a rhythmic fashion where we count a few seconds, tilt the bottle back, and so on.
Just the experience of giving him his first bottle as parents was pretty awesome. Just a few weeks ago, normal things like feeding him a bottle seemed so far away, but it's another sign that we're nearing the end of the NICU journey. His one nurse mentioned that his transfer over to the famous "Pod G" (also known as the "Feeders and Growers" room) could be soon and it's one of the last steps before getting sent home. His other nurse also gave us an envelope marked "Discharge Instructions", which contained a bunch of papers that made up sort of a "baby manual" that was written more for full-term babies, but still applies to us. All great things to see and hear...but we also know we're running out of time to finish his room. Time for us to get busy!

Enjoying the Silence

As of Monday night, Luke is a hefty 3lb 5oz and is now getting his feedings in 1 hour vs. the 3 hours he was getting them previously and he's doing great with it. The specialists gave him a once-over today and said that he still has some learning to do (with eating, swallowing, etc.), but they'll continue to work with him and track his progress. His nurse gave him his second "test bottle" anyway and he was able to drink 10 of the 15ML's, which sounds good to us!
The best part of the visit though was when I held him for over 40 minutes and during the entire time, he didn't de-sat (or over-sat) once. I know this sounds good, but it's hard to describe how incredible that silence felt. For the first time I was able to hold him, while he slept and didn't have to hear "DING DING DING DING" every few minutes. I'm not sure anyone who's never spent any time with a baby in a NICU can really appreciate what it's like, but it's probably the top 5 most peaceful moments I've ever felt. While I held him, taking in the moment, I looked around at his little area, at the decorations on his wall and window, his monitor and really started to feel like we're in the home stretch. That soon, this will become a distant memory and Luke will be at home with us.
On Tuesday we have our next family meeting with his doctor and we'll be getting his progress report and an updated timeline. We'll let you all know what they say. Until then....good night.

The Latest // Thank You!!

First off, Luke is doing very well. As of yesterday, the doctors were able to move him one step closer to being off of his oxygen completely. Right now he is just on a type of straight air canula that doesn't give any liter flow (pressure) and instead is just a very small amount of oxygen. They also tried giving him a bottle feeding for the first time, just as a test. It was only 8ML's of milk and he took about 5ML's of it, so that seems to be a good sign. Early this week he will be evaluated by the specialists who will check on his ability to swallow and other developmental progress. If they give their "stamp of approval", that means they will continue to attempt bottle feedings and supplement whatever he doesn't take from a bottle with the feeding tube.

It was really great to see him doing so well after being in California for work all week and not getting to see him at all. We had a busy visit with him on Saturday along with Luke's Grandma "Swannie" and Auntie Amber who got to see him through the visiting door.
We have a meeting with his doctor on Tuesday so we should be getting a full progress report on him and possibly even a tentative release date. We're pretty sure he has a few weeks left there, but we're starting to feel like we're entering the home stretch. As always, we'll keep you all posted.


Lastly, we wanted to just thank everyone who came out to the benefit that a few of our friends put together for us at Jets Saturday night. It was really incredible and we hope everyone had as great of a time as we did.

Daddy Look What I Can Do

Luke and I are missing daddy while he is away for work in California.  I have been given the blog responsibility.  While daddy is away Luke is continuing to be at room air 21% oxygen and his nurses keep challenging him to go lower and lower on his flow.  As of last night when I left he was at 1.5L and his nurse was going to bring him down to 1.25L that night.  When I called to check in on him late last night he was handling this change very well.  To my surprise, when I called this afternoon, they had lowered him some more, down to 1L.  I think we had mentioned earlier that at 1L flow he can try taking a bottle.  When his doctor called today to give me his daily update I asked how long he had to be on 1L before we could try the bottle.  She said as long as he is doing well on 1L it would be about a day.  So that means by this time tomorrow our little boy may be taking his first bottle.  They had told us that when he does start he may take a bottle for one of his feedings and then the next he would get through his tube.  This is because he will tucker our and need to rest up the next time around.
Another thing his nurse had mentioned was that they want him off of the caffenine, but she felt he is not ready for that.  I am a little nervous because he is doing well getting weaned off the oxygen, but he also has help from taking the caffenine as well as Diarell.    I think we all agree that the most important thing right now is getting him off the oxygen and then we can worry about getting him off some of the medicines he is on.  I told John that while he was away Luke would try to do his best and we can't ask for much more than that.  Here is a recent photo, sorry I don't know how to add video yet.

Weekend Update

Well another weekend has come and gone.  We are happy to say that Luke has cracked the 3lb mark and is
15 1/2 in long.  Our visits with him have been good.  Since he is getting bigger we are able to share the time that we are holding him. Before we had to take turns.  One night was mine and one was his.   We really enjoy our one on one time with Luke and I think he does too.

He has been on low oxygen and yesterday he was at room air 21% for most of the day.  Therefore, last night they were able to wean his flow to 1.75L and he is still only requiring 21% oxygen.  Also, during that visit  Luke was very awake and active.  While in his isolette he was playing with daddy.  He would grab daddy's finger with his hand and try to pull it into his mouth so he could suck on it.  Eventually he was content just sucking on his own hand.

When we got him out to hold him we gave him his pacifier, which he absolutely loves.  He was sucking on it for a long time and when he started to fall asleep we put it away.  That is when we were really able to hear Luke's cries.  We were trying to comfort him and figure out why he was crying.  When singing and rocking him didn't work we tried the pacifier again.  Yup, that was it.  Our little boy sure loves his pacifier already.  With each day Luke has more and more of a personality. We can't wait to see what he shows us next.

Back to the Comfort Zone

Well after a few semi-rough days, the doctors decided to give him a bit of a break and take a step back. They increased the flow of his oxygen back up to the full 2.0L, but luckily the oxygen percentage is still staying between 24-30%. It seems after the two weeks of rapid progress we all got a little ambitious and may have been a little too aggressive trying to wean him off of the oxygen completely. We're ok with this as it seems obvious he's just not quite ready yet and we have plenty of time left so there is no hurry. I think in general the goal is to have him off of oxygen by around 36 weeks and since he was just 34 weeks this past Thursday, we have some time.
He's also started to get a little bit of "newborn attitude" and is starting to try and cry more. This is a good sign that his lungs are healing and he's becoming more like a normal baby. It won't be long before we walk in there and hear him wailing away one of these days. At his last weigh in, he was up to 2lb 14oz, but we think it might hover around that mark for awhile now that he's back on his diuretic. We'll see how the weekend goes and let you all know.

Our Heads Are Spinning

It's been an interesting 48 hours or so. Tuesday morning they decided to finally give him a blood transfusion (extra blood) because his hemoglobin had gotten a little low. They had been debating on whether or not to give him one for awhile. He got his immunization shots later in the day, as well as a little bit of Tylenol in case he had any typical infant reactions to them, but seemed to be ok.
Then early this morning we found out that overnight he was having bad de-sat spells and sounded like he was getting some fluid build-up in the lungs again. This prompted the doctors to start him on his diuretic again, twice a day, to try and eliminate that problem once more, along with a potassium booster in his milk because the diuretic usually lowers the potassium in his blood. This isn't a huge deal, except for the fact that last time he was on the diuretic, he stopped gaining weight, so it seems like until he gets a little further down the path, it will continue to be a juggling act.
Later today we called in to check on him and his nurse said he was doing really well and she was able to try lowering the flow on his oxygen, even all the way down to 1.0L for a short time, which came much to our surprise. However, by the time we arrived later in the evening for our visit with him, they had to bump him back up to 1.5L.
We talked with one of the resident doctors that has been taking care of him for awhile and he basically said that Luke just continues to battle typical premature baby issues, with the extra lung complications because of his extreme prematurity. He assured us that these issues will slowly go away with time and that we'll just need to be patient. Admittedly, the rapid progress he made over the last two weeks kind of spoiled us and now that it has plateaued a bit, it's a "friendly" reminder that we still have a long way to go and we need to be patient. Probably a wake up call that we needed.
So we ask that everyone keep praying, we're not out of the woods yet. As always we appreciate the support as we continue the slow and steady road of recovery.
As you can see...he also continues to get more and more handsome each day.

Here are two quick impressions he has learned to do: 

"Popeye"

"The Confused Hillbilly"

Slow Growth and Some Immunization

Not much to report over this past weekend. Luke gained a little bit of weight, bringing him up to 2lb and 13.5oz so we're getting close to the 3lb mark. His breathing had begun getting a little "crackly" on Friday, but they gave him a dose of the medicine he had been on for awhile and it seemed to clear it up.
This week they'll begin giving him his newborn immunization shots and we think he should be getting his 2nd eye exam which they did not do last week for whatever reason.
Other than that he is doing great and is getting more and more of a personality each day. He makes some really funny faces that we hope to get on camera soon to share.

8 Weeks

8 weeks - 2lb 12 oz. - almost exactly twice the weight he was born at. It's been a long, scary, wonderful road. Our little boy has grown so much so far and although it's been hard, we appreciate all of the extra "tiny baby" time we've been blessed with. The time it takes going to and from the hospital every day is completly worth it when we arrive and get to see his baby smile. The wrenching concern we feel every time we see his numbers drop, even for a second and even when we know it will go right back up is worth it when his nurses tell us how well he's been doing that day or how he gained a few ounces. The seemingly constant pumping Stacy has to do each day to provide Luke with milk is worth it, knowing we'll get to feed it to him in a bottle one day soon. The fear of knowing all of the things he could still have to go through is worth it knowing that soon, it will all be behind us and Luke, Stacy and I will be a happy family together in our own home.
Here's a photo look back at the first 8 weeks.

Going Strong

As of Tuesday night, Lucas is still going strong on just the canula (heated/blended oxygen mix). He's currently at 2.0 liters of oxygen and as he continues to improve and adjust to the canula, they'll gradually ween that down to 1.0 liters (.25 liters at a time). Once he gets to that point...which could still take a little while, they can begin bottle feeding him.
His sodium levels have returned to normal and he's gained a tiny bit of weight over the last few days (80 grams), but that continues to be his current challenge. The doctors have increased his feedings to 30ML's in an effort to spur the weight gain, but they have to be careful because he is still dealing with a minor reflux problem that causes him to have little spells now and then.
Other than that he is doing just fine. He'll be getting his 2nd eye exam this week to see how his eyes are progressing so we'll hope that comes with more good news. He's really started to develop a personality that we see through his facial expressions mostly and just his little movements and reactions when we do things like taking his temperature, changing his clothes or diaper - all of which the nurses are getting us more and more involved with. And yes, I (John) finally changed a "poopy" diaper - although I need a lot of practice. I'm sure I'll get plenty of that in the months and years to come.
Lastly, we know that you all enjoy the pictures and videos so I'm going to try and find some time to make a blog post with a bunch of photos (and/or videos) in addition to the daily news updates. That is if I can find the time. Wish me luck.

Our Little All-Star

Wow! What a couple of days. Sorry we've behind with the updating. While we were busy, Luke was busy getting used to his SiPap and improving each day. Then came today (Sunday)....

When we arrived today, his nurse told us that he had still been doing very well on his SiPap and she was able to have him at only 21% oxygen (room air), while he was on his left side. Then she said that at one point she had put him on his belly with his head facing to the left and after stepping away for a few minutes came back and found that our son, mr. muscles, had lifted his head AND his entire SiPap tube/mask apparatus and turned his head to the right. THEN...

After the 7pm break, we came back and his first night nurse, Lucy, let us give him his bath, change a VERY poopy diaper (again, Stacy did the hard work), take his temperature and she weighed and measured him. Then it was time for his 2-week change out of his isolette bed. Lucy said that she would take off the SiPap mask and let us hold him (off of all support) while she changed out the bed. We knew this moment would be brief, but wonderful being able to hold him without worrying about disturbing any breathing tubes, masks, etc. but had no idea it would go this well.

While we were holding him, having our moment, his nurse Lucy was amazed that he wasn't de-satting or showing any signs of distress after several minutes of being out and on no support. She then went and got one of the doctors and asked if they could try taking him off of the SiPap for awhile and go straight to what they call heated/blended which is warm, highly humidified oxygen (usually the last step before being off of breathing support entirely). The doctor took a look, said he looked good and that they would give it a shot. In the worst case, they would just have to put him back on SiPap - no big deal.

Much to our amazement and beaming happiness, one hour later there he was on a simple canula (little tubes in the nostrils) at at only 35% oxygen. As always, they forewarn us that he could always need to go back on the SiPap (and possibly even the ventilator), but so far, so good.
As I type this (around 11pm), we just called for another update and they said he's still doing well and they plan to keep him on it unless he shows any signs of needing to go back on the SiPap.

All in all an amazing day as Luke continues to show great improvement and we'll continue to hope and pray that he continues down this path of healing and hope you all will too.

We'll keep you posted as usual. Thanks everyone!