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!