Luc and I had a nice, but short kangaroo today.  He was happy to have his Mamma holding him for a bit but he got tired quickly.  He is still on the antibiotics and there is talk of putting in another PICC line simply because the full course of antibiotics is 14 days and IV lines tend to last a couple of days at the most. Also,  they don’t want to be picking at him all the time.  I hope they decide to do put it in sooner then later because I don’t like seeing Luc’s little veins so sore. 

Luc now weighs 3.5 lbs - YEAH!!  His breath rate on the vent was also turned down one setting so at least we are making some progress even if it is small.  Beau is leaving for the River tomorrow, I am happy that he will be getting away for awhile.  He deserves it! So, I will be holding down the fort here for the next couple of days.

Not much to report.  Luc had his head scan today which looks good and also had his 1st eye exam.  His eyes look good so far.  No signs of retinopathy yet so that is good.  He is scheduled to get another eye exam in 2 weeks and they are hoping to see that his retinas have matured a bit more.  They grade eye maturity on a scale of 1-3, 1 being extremely immature 3 being perfect and Luc is at a 2, so not bad. 

He is continuing to gain good weight and is still being treated with antibiotics for the mucus that they found in his lungs.  I didn’t get to kangaroo today because he has such a busy morning, I am thinking they are going to put us back on the every other day schedule until he is done with the antibiotics.  It is hard not to hold him but I want him to continue to improve, so I am going with what the doctors say.

Aside from his weight gain, it was a quiet day. Luc seemed to be resting comfortably. His vent settings have not changed, which is not a bad thing. As long as he continues to maintain, we are happy with that.

Kate had a great Kangaroo session today, which made mama quite happy. As show cased by the video, Luc seems to rest most comfortably when he has his binky in his mouth. I would never have thought that babies could suck on a binky while on a vent, but I guess this is just another part of the ongoing education.

Brian and Ashley came into town today. They hopped a red eye from Denver to Syracuse, then rented a car and drove to Boston. It was one long day for them, but we were happy to see them and introduce them to Luc. They were able to be there for one of his Cares. After going to the hospital, we enjoyed a wonderful Italian dinner in the North End. The two of them are only here until tomorrow. A short stay indeed, and we will be sad to see them go, but they’ve got some fun waiting for them up on the River.

It’s starting to set in that Kate and I are going to miss out on our vacation this summer. We were supposed to have been up on the water with everyone else this week. We’ve have been talking about dividing and conquering. I may try and head up there to be with the family for a couple of days later this week if I can swing it. Kate volunteered to stay back and hold down the fort with the understanding that I will do the same for her over Labor Day. I’m keeping my fingers crossed that I can clear the time off with work as I desperately need a swim and some time with family.

She also gave us the news that Luc will probably not be coming home on or before his due date, she said it would probably be more around 42-44 gestational weeks (which puts us into November).  As bad as all of this news is at least we know what we are dealing with.  Maybe now I won’t be quite as devastated every time his vent changes and won’t feel down every day that I walk into his room and see that he is still on the vent.  So, the current game plan is to keep Luc quiet and growing.  As long as he continues to gain good weight, he will continue to grow healthy lung tissue and will get stronger and stronger.    

On the lighter side of things, Luc can finally wear little preemie clothes, which is exciting.  I feel like I can finally put my mark on him – granted he isn’t wearing Baby Gap or anything but it is still fun to dress him in little t-shirts that smell like my laundry rather then the sterile hospital.  We also had a really nice visit from Dan Hoffman today.  It is always great to see family – tomorrow Luc’s Uncle Bri and Ashley are coming into to town for a quick visit.  It will be great to introduce little Luc to his future hockey coach.

Luc seems to be responding to his antibiotics and is doing better.  Not much to report, which is a good thing!  His vent rate was lowered to 22 late last night and his oxygen levels are slowly returning to normal levels.  When I got there today to Kangaroo, his oxygen level was at 60 %.  Once he got snuggled into his Mamma’s shirt, I am happy to report that his oxygen levels were down to 45 %. The nurse said that he was “lovin’ on me”. It is such an amazing feeling knowing that maybe I am actually doing something to help him.

Luc is holding steady on his weight. Candy, one of respiratory therapists, told Beau this morning that once preemies hit 3lbs they tend to really take-off. We’re on the bubble and hoping that Luc keeps moving on up. He hasn’t had a Lasix treatment today, so perhaps his next weigh-in will put him over the top.

In other news, Luc has a new roommate.   She was born this morning at 29 weeks, I didn’t catch her name yet but she already weighs more then Luc.  It is amazing what just two more gestational weeks can do.  

Luc seems to be settling in today. His vent settings are still above normal as compared to last week, but he has come down even a little since yesterday. His infection is turning into quite the mystery. His 2nd blood culture came back negative today. The nurses explained that it may be just due to normal bacteria that we all have on our skin that triggered the positive. They are keeping him on the antibiotics for the next week just to be safe, though.

Luc has been gaining weight at a decent clip. He’s up to 2lb 15.5 oz. His gain will fluctuate over the coming days as he is receiving diuretics M-W-F. As a result he is not expected to gain as much during these days. The diuretics are in place to help clear the fluid in his lungs as it is now official that Luc has chronic lung disease. This is a very generic term completely common to preemies that can manifest in many different ways. For him, it is showing as persistent mucous buildup, which is in turn affecting the rest of his respiratory function (hence the elevated vent settings).  It can have other longer lasting effects, but I’ll save that for another post.

All in all Luc had a good day. As you can see by his picture, he was bright eyed and bushy tailed when I popped in to see him this morning. Kate was a little bummed that she only got to kangaroo for a shortened period today, but that was due to the fact that they had to put in a new IV line which took quite a bit out of him. Let’s keep our fingers crossed for tomorrow.

The nurses and doctors were poking and prodding all night long. As a result, he seemed noticeably tired this morning. His O2 levels were quite high at 75% (he’s normally around 40%) and his vent pressures were elevated as well at 27 (normally 22 or so). The nurse told us that he had been at 100% O2 for most of the night. So, the fact that he has come down to 70% is good news.  His heart rate is up in the 200’s, which is quite high for him, but this is for the fact that he is fighting the infection. His temperature was 100.4, but this is not a bad thing. Apparently, preemies don’t get temperatures, they actually lose body heat.

The staff is doing their best to stabilize him and identify the best course of treatment. In addition to taking a blood culture and blood gas check, they’ve put in an IV and begun administering preventative antibiotics. Once we get the test results back from the blood work later this evening, the staff will offer the medication best suited to fight the infection.

Looking to the silver lining, Luc is still as feisty as ever and he doesn’t look as bad as the numbers make it sound. As always, we take it day be day and hope that the little guy shows some type of improvement tomorrow.

In other news, Luc managed to extubate himself again, so he has a brand new shiny tube helping him breathe.  The Nurse said he did very well while he was off the ventilator; they considered putting him on CPAP for another trial run but decided it was still a little too soon.  He weighs a hefty 2 lbs 11 ounces; the nurse says she would like to see him gain about a half an ounce to an ounce a day.  I am exhausted after yesterday and am looking forward to another blissful two hours of kangarooing tomorrow.

In order to combat the lung deflating, they have turned up Luc’s vent and oxygen settings and have positioned him on his left side to allow for better air flow to that lung.  They have also decided to give Luc his 3rd blood transfusion because his hemocrits are low again.  They plan on doing another chest x-ray in the morning to see if his lung has opened up any.  If Luc is doing better tomorrow I can go back to my daily kangaroo session, which I am looking forward too. 
 
Needless to say, Beau and I came home from the hospital feeling pretty deflated ourselves.  I turned to the mattresses and had a good cry while Beau stood by just long enough and then dragged me out of bed and made me go the grocery store.  I don’t know where I would be without Beau during this time, he is truly my rock.