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  DOL 27 - Give It to Us Straight Friday August 11th
 
AHHHHHH!! That is all I can say.  Luc had another bad night, he managed to extubate himself again and as a result his vent settings and oxygen levels are way up.  Beau and I had a long talk with the nurse practitioner today because we were feeling so helpless and frustrated.  She told us in no uncertain terms that Luc has developed chronic lung disease.  She said not to expect him to be off the ventilator for at least another 3-4 weeks.  She said that with Luc’s symptoms he just has to be weaned VERY slowly, some days his settings will go down other days it will go up and not to hang on every number the vent reads.

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.

 


 
  DOL 26 – Steady As He Goes Thursday August 10th
 

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.  

 


 
  DOL 25 – Atta Boy Wednesday August 9th
 

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.

 


 
  DOL 24 – One Step Back Tuesday August 8th
 
Apparently, Luc has come down with an infection.  The staff isn’t quite sure where it began, but it has moved into his blood. They are looking to his lungs, first. The infection may be related to the recent lung collapse and fluid build up. Earlier today, they thought that he may have had pneumonia, but they seem to be shying away from that diagnosis as of tonight.

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.

 


 
  DOL 23 – I Hate Roller Coasters Monday August 7th
 
Today was a little better of a day.  The nurse practitioner said that Luc’s lungs are looking much better. His vent pressure is still at 24 but his oxygen levels are a lot lower then they were last night.  They are starting to give him lasix 3 times a week in order to combat the fluids that are building in his lungs.  Hopefully this will help in weaning Luc off the vent.  She warned me that this would be a very slow process full of ups and downs but that she had faith that Luc would come off the event sooner rather than later. 

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.

 


 
  DOL 22 – A Turn for the Worse Sunday August 6th
 
So today wasn’t the best of days.  Beau and I arrived at the hospital looking forward to nice afternoon of kangarooing and instead got hit with the news that Luc’s right lung had started to deflate.  Of course, the Team says this sort of thing is ‘common in babies of his size’ but I am getting pretty sick of hearing that.  They say that this can happen because of infection or because the tube that is helping him breath is plugged with mucus.  The team said they don’t think Luc has an infection because he isn’t acting sick. They took some blood for a CBC and blood culture just in case. 

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. 

 


 
  DOL 21 – Happy Anniversary Saturday August 5th
 
It’s our first anniversary! I can honestly say that I had not expected to quite be in this position a year ago. The day started off with a little Kangaroo care with yours truly hosting. It was so much fun. I just can’t get over how tiny that little guy is. He had another minor brady spell and a desat. I am definitely worried by his respiration. He is still sounding coarse and his vent levels have not changed all week- but, all in all a good day.

From there, we came home, took a nap and then headed back downtown to have dinner at the Top of the Hub. It’s a fancy little restaurant on the 52nd floor of the Prudential Tower. Our reservations were a little on the early side (5:30) as we wanted to give ourselves plenty of time to visit Luc afterwards. The view was truly spectacular and the atmosphere was perfect. Kate had a sirloin and I ordered pasta. We enjoyed a nice bottle of wine and finished with crème brulee. It was a welcomed event away from the hospital. We gave Luc a visit on our way home. He seemed to be resting nicely. His vent settings still haven’t changed, but we hope tomorrow will be a better.
 


 


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