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!

Family Meeting #3 Review

Today, Stacy and I had another family meeting with Luke's main doctor and one of his favorite nurses, Rhoda. There wasn't too much new information and it was mostly a recap of the great progress he has made in the last 7-10 days, particularly moving off of the ventilator which his doctor said is a HUGE step. They reminded us there is always a chance for setbacks, but that the longer he is on the SiPap, the less chance there is of going backwards.
He has continued to do well on the SiPap and is at fairly low oxygen levels. He still has his de-sat spells, which they think is more related now to some minor reflux issues with his feedings rather than apnea. They're going to try a bit of medicine called Regula (if that's how you spell it) which may or may not help with it so we'll see what happens. His weight has remained around the 2lb 7oz mark which they didn't seem too concerned about and they still expect to him start gaining again soon.
At the end of the meeting they kind of went over the main criteria for him going home, which is still at least several weeks away, but it was nice to at least hear the "H" word. While we'd obviously love to take him home soon, we're very patient and are OK with him being there as long as is needed to make him healthy.

So Long, Breathing Tube!

Well, today was quite the day. Stacy had gone to visit Luke after her meeting at school today around mid-afternoon. Luke was doing well and Stacy got to hold him once again. After a nice, long, good visit Stacy came home where I was still working. About 5 minutes after she got home, she received a call from Luke's nurse at the hospital who told us that right after Stacy left, Luke's ventilator started to show an alarm that indicated that air was leaking from inside or around the tube. Normally in this instance, they simply remove the breathing tube and then re-intibate it back in. However, as they were getting ready to do so, his one doctor decided to try a different path and simply leave the tube out and put him on a SiPap machine instead to see how he does on it. Low and behold, he took to it pretty well and has been doing quite well "sat-wise" and while his oxygen level is slightly higher than it was on the ventilator, it is normal to do so anytime you switch between machines.

So! Obviously we were very pleasently surprised! This means no annoying breathing tube down his throat anymore and he more or less does his own breathing with only a minimal back-up rate supplied by the SiPap as needed which is a much smaller puff of air rather than a breath. The nurses can still administer full manual breaths if he needs them, but this is a great step in the right direction. It also means that we may soon get to hear him make little sounds and cries as the tube is no longer there to block his vocal cords! Even still, we're keeping our excitement slightly tempered as we know there is always the chance he may regress a bit and need to go back on the ventilator at any time. Around 6:30, we both went back to see him with his new apparatus. As you can see in the picture, it's a little more menacing looking than the little breathing tube he had before, but we know that it's the best thing for him right now and a good step forward.

Shortly before we left, we assisted his nurse with giving him his bath, taking his temperature and changing his diaper (well, Stacy did the diaper). The best part was when his nurse took off the SiPap mask so she could clean his face a little bit and for the first time we got to see our boy's little face without anything covering it other than the small NG (feeding) tube. We didn't get to take too many pictures as it was only for a very quick moment, but it was very special to see our little boy's "big boy" face.

Our Special Time

This morning we called to check up on Luke and his nurse had nothing but good things to say.  She informed us that they went down on the rate and pressure of his vent and  his oxygen level is just above room air.  She also told us that his doctor would like to try and get him off the vent possibly as early as the end of this week.  We were both so shocked by this because we had expected it to be a  few more weeks.  As long as Luke cooperates with his doctors request they may take him off the vent and put him on something called C-pap.  This is like a little mask that will help him to breathe.  It is used on people who have sleep apnea to help them breathe at night.  We are keeping are fingers crossed.

Tonight we went for our visist and he had one of his primary nurses taking care of him.  She let me hold him and this time I chose to do the Kangaroo hold, but I wanted him more on his side so I could see his face too  In order to keep him warm we tucked his head inside my shirt.  

This time I was able to hold him for a long time. He seemed very comfortable on me and I felt even closer to him.  I could see his adorable face and feel his hands and feet moving around. With each day he is getting more and more comfortable with being handled and we know he loves the special time he gets with mommy and daddy.

Lots of Holding and a Pinch of Salt

Well, maybe not salt exactly, but a little extra sodium solution is going to be added to Luke's milk feedings to bring his sodium level up a little bit as it was down somewhat as a natural reaction to coming off of his I.V. nutrients which he is done with now. As long as he doesn't need anything in his "pik" line in the next 48 hours, they'll most likely take it out. One of his nurses is in favor of keeping it in a bit longer as a precautionary measure, but we'll see what happens.
Tonight I (John) got to hold him for the 3rd time and it's starting to feel much more natural and normal now. As any parent knows, looking down at your child is a great feeling and when they look back up at you it's even better. Luke is getting more and more used to being held and handled by the nurses. They've been able to come way down on his oxygen levels (almost at room air level now) which is great and while he still has his little "de-sat" spells, it seems to be him just holding his breath as he stretches and moves around rather than anything with his oxygen level as he does it whether he's at 22% oxygen or 52%. The doctors continue to reduce his ventilator rates and pressures and increase the amount on his feedings as well.
We'll have another family meeting with his main doctor this week for a progress report. We'll keep you all posted as usual.

Mr. Inquisitive

I was very excited for today's visit because my ear doctor said it would not be a problem to hold Luke.  When we arrived I was very eager for my one on one time with him.  It was kinda chaotic in there because there were several new babies that had been admitted into our pod.  For once, Luke was not the one driving the nurses crazy.   After about an hour I was afraid I wasn't going to get to hold him, but once things calmed down I was given the opportunity.  This time I choose to hold him in my arms so that I could see his cute, starting to get pudgy,  face.  Once the nurse got him out he was very wide eyed and explored his new surroundings outside his isolette.  He also seemed very interested in who was holding him.  He looked up at me several times. 

Once he knew he was safe in my arms he went back to sleep.  I tell you when I am with him I just can't stop smiling.  He is such a beautiful boy, the best of both of us.  I am so proud of him and how strong he has been throughout all of this.  We know that this situation is not the norm, but we are blessed to have this special time with our son.

31 Weeks

Today was the 6-week mark since Luke's unexpected early delivery. Time seems to be flying. As part of his six-week checkup he had his first eye exam by the specialist at Lutheran General. Lucas handled it like a trooper, just as he has been, and the results were as good as we could have hoped for. According to the doctor, Luke's eyes are right about where he'd expect them to be for a baby born at 25 weeks. He'll recheck them again in two weeks and see how everything is progressing. As we said before, we do expect Luke to need some type of procedure or another at some point down the line, but for now, we'll take all the good news they can give us.
He's also up to 20ML's of milk now per feeding and after a great week of the doctors having been able to go down on his ventilator settings, tonight he'll be getting a day to catch up and hopefully begin going down again tomorrow. They also explained to us that the "pik line" I.V. in his foot will still be there a few days as he gets some basic fluids and as a precautionary measure, but we hope that they'll remove it soon. He is off his I.V. nutrients so he did lose about an ounce or so of weight, but the doctors say this is normal and he should gain it right back soon and more.
Next week we'll be scheduling another "family meeting" with his main doctor to review his progress and next few steps, but for the next few days, with God's help, it'll hopefully be more milk and lower ventilator settings.

Nice Surprises

Surprises aren't always good, but many times when they are, they are great. As was the case today. Early this afternoon we received a call from Luke's newest resident physician who had some good for us. They did his 6-week brain ultrasound today, which we didn't expect to happen until Thursday and it looked good. Nothing of concern - woo hoo! They also said that he was up to 17ML's of milk per feeding and since the amount of I.V. nutrients he was getting was so little, they decided to take him off of those early as well. Because of that, if everything goes well for the next 48 hours and they don't need to give him anything via his "pik" line (special IV in his foot), they're going to take that out too.

When we went to visit tonight, I was also pleasantly surprised when his night shift nurse asked us if we wanted to hold him again. I was lucky enough to receive the honors a 2nd time because Stacy has a bit of an ear infection that she's been dealing with so we decided to be cautious and refrain from her handling Luke until it goes away. This time, rather than holding him "kangaroo care" style, I just held him in my arms while he was wrapped up in the blankets from his isolette. It was nice to be able to look down and see him, which I couldn't do very well when I was holding him the other day, but I did miss the closeness of feeling him rather than the bundled blankets. He did extremely well the whole time, held my finger and even slept a little while I held him.

The doctors have been able to continuously drop the rates and pressures on his ventilator this week which is great and he's been able to maintain a low oxygen level setting as well. We'll keep hoping and praying that this continues as well as his growth as he nears the 3 lb mark.

Luke's Big Weekend

Stacy, Luke and I started 2010 with a great weekend. Have a look!

SATURDAY:
On Saturday, Luke's nurse introduced him to something new...clothes!! We couldn't believe how "big" he looked when we saw him in his little camoflage onsie with "Major Cutie" on the front - an outfit his nurse came across in the NICU and thought it'd be perfect for him.

Clearly, he liked it as you can tell by his smile...

Part of the reason he looked like such a big boy is that he's continuing to grow! He's now up to 15 ML's of milk per feeding and is around the 2lb 8oz mark. We're also starting to see him grow in length as he's up to 37cm as of his last measurement. He's doing great with his feedings and we hope this continues.

SUNDAY:
As great as Saturday was, Sunday took the cake as I, his daddy, got to finally hold him for the first time. I was actually somewhat prepared for it as his nurse actually offered to do it on Saturday, but he was 'desatting' a bit and we thought it'd be better to wait until he was a little more receptive to touch, so we planned to do it today.
Even though I thought I was prepared, it was still an amazing and surreal experience. The first few minutes were a little tense as they go though the juggling act with all of his wires and IV and breathing tube and all the rest of his gear, but once he was all set, he was more than receptive and really seemed to like it. They only had to bump up his oxygen a little and he only had two little "spells" where they just gave him a few extra breaths - nothing big.

For me, as I said, it was surreal. It took probably 20 minutes or so before I finally felt a moment of calm and the reality of where I was and what was happening started to settle in. This was my son. I was holding him for the first time - a moment that only comes once. While Stacy was busy trying to balance taking photos, video and soak up the moment herself I just sat as still as I could and try to feel his little breaths and hear the little noises he was making, which was mostly his breathing tube, but he's also started to try and suck on his fingers and thumb a bit while he's getting milk in his feeding tube so I could hear him doing that as well.
I stared up at his monitor a lot trying to gauge his reaction (SAT level) to when I would softly talk to him, or kind of sing to him. The whole time he laid pretty still other than a few little kicks here and there. There were also times when I could feel him sort of grab onto my chest and squeeze a bit. It was an amazing time that I'll never forget.



In general, he's doing quite well right now. They've been able to reduce the rate on his ventilator the last few days and once it's a little lower then where it is currently (32 as of Sunday night), they hope to be able to start reducing the pressure level as well. This will be an important week for Luke as he'll be 6 weeks on this coming Thursday and will get a lot of important tests. We'll keep you all posted as usual.