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.