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Published: Saturday August 5th |
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 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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Published: Friday August 4th |
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 Kate was able to hold Luc again today. She is creating quite a bond with the little fella. Luc did have a mild brady spell (dip in heart rate) while Kate was holding him today. He came out of it on his own and fairly quickly. Kate loves singing to him and she is sure that is quick recovery was due to a little Mama love.
The nurses haven’t begun lowering Luc’s vent settings yet. He hasn’t made many movements on his pressure or sat levels. It’s not that it’s a bad thing, but we’d like to seem him making at least a little progress. He’s been pretty steady on his vent settings for a while now, and as this is turning into our next milestone, we are anxiously watching the dials. The nurses have told us that it’s quite common for preemies to stay on the vent until 30+ weeks, but we would like to see that happen much sooner. He’s sounding a little more congested on a regular basis.
Luc weighed in at 2 lbs 9oz. today and he has been eating and pooping well. He actually had a blow out today in which he decided to poop all over his nurse and the inside of his isolette. It was a very big mess to say the least. |
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Published: Thursday August 3rd |
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 Luc seems to be settling in. It feels like we’ve been waiting a long time for him to reach his birth weight. This was a big milestone and we are excited about his progress. Kate had a great Kangaroo session today. She was able to hold him for over two hours. Luc’s sat levels seem to be good and we are hoping that this is a sign of things to come. The nurse said this morning that they may start to challenge him on his vent settings. They’d like to see him start doing a little more of the breathing on his own. Also, Luc put on another couple of ounces and weighed in at 2lbs 7oz. |
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Published: Wednesday August 2nd |
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 Luc looks great today! As hoped for, the transfusion has turned him into a new little baby. His saturation levels really seem to be evening out. This is most likely due to all of the new red blood cells swimming in his body. As the nurse put it, ‘he is breathing beautifully’. She also told us that because Luc is now past his birth weight, we can now Kangaroo him every day!!! Woo Hoo! Needless to say, Kate is beside herself. Also, both his PICC line and his IV were both removed today. It’s nice to see him without all of the little lines in his body. We were both excited to see how good he looks. |
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Published: Tuesday August 1st |
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 It’s official, Luc has finally passed his birth weight. We just got the news- a hefty 2lbs 4 oz. How about that! We are really excited for this milestone as Luc looked a little worse for the wear this morning when I saw him. He had his right arm bandaged and taped up which with an IV line sticking out. Such a sight two weeks ago might have rattled me but this is old hat. Apparently, he needs another blood transfusion due to the fact that he has been having blood drawn on a daily basis for his blood gas checks and whatnot. In all he is receiving two doses of 8 cc’s. If this is anything like the last, he will be a new little boy tomorrow. The hope that this will also help his O2 sat levels. As the nurse put it this morning, ‘he will have a new platoon of soldiers (red blood cells) doing the work’. |
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Published: Monday July 31st |
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I feel like we are stuck in a holding pattern. Luc has not changed much over the past few days. They have lowered his vent pressures slightly, which is good, but his sat levels are still low. This means that Luc is requiring more help from the vent than we would like, but the hope is that he will start making progress soon. His weight I still stuck at 2.2 lbs. I know it’s a completely arbitrary mark in the grand scheme of things but Kate and really want to see him best his birth weight. His glucose levels are low tonight. This was explained to us that it is due to the fact that Luc has been taken off of his parenetral nutrition. Apparently this has more sugar than breast milk thus accounting for the dip. As a result the hospital staff had moved his feedings, along with his cares to every 3 hours rather than every 4. The hope is that the added feeding will correct the discrepancy. |
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Published: Sunday July 30th |
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Still no big changes in Luc’s status. His vent levels and sat rates still seem to stay about the same. Nobody seems to be too worried about it, and I think they are sick of us asking all of the questions. As they like to say, ‘He will let us know when he’s ready for a change.’ His sodium levels were low, but this is most likely due to Lasix. So, he got a boost of that today. He did manage to gain a little of the weight back that he lost as a result of the Lasix. He’s back to 2lb 2oz. We are really pulling for him to get back to his birth weight. He’s up to 20cc’s of food, so we are hopeful that will get him there in the next day or so.
Kate had a great Kangaroo session today (reference the current video). She had and extra long session, which was a bonus. Luc just about melted in her arms once he got settled in.
I am back to the salt mines tomorrow. I will stop in and see Luc before work. I’ve been doing this since I started back to work, and it really helps to put a nice start to my day. |
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Published: Saturday July 29th |
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Not really too much to report today. Kate and I headed into the hospital at lunch time for his noon Care. We were running a little behind and got there about 20 minutes late and consequently missed his session. We were a little bummed as we had told the nurse that we would be there, but they went ahead without us anyway.
His settings have not changed on the vent, and he still seems to be all over the place with his blood O2 saturation levels. This is one of the key metrics that we watch when we are there. There are three primaries; 1) heart rate, 2) O2 saturation level, and 3) breaths per minute. We need him to start ‘sat-ing’ at a higher rate with more of his own breaths until they can really think about taking him off of the vent. We’re hoping that he starts moving in this direction, but he seems pretty comfy where he is at.
On the home front, Kate and I started clearing out and organizing the baby’s room. It’s slow going, but we made some good progress. We were able to get the Queen-sized bed out of the room and down into the cellar. The next step is to start setting up Luc’s crib. We are anxiously awaiting the arrival of his dresser. Once that comes, we can start putting his clothes away, which are currently stacked high on the dinning room table. |
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Published: Friday July 28th |
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The first of probably many references to Star Wars, but I think it fits. Luc and I met face to face for the first time today. What a great feeling! He is one tiny little dude, but strong for his size. He grabbed a handful of chest hair and gave it quite the tug. I was able to hold him for about an hour before he had to go back into his isolette. I am looking forward to doing it again. We bonded.
Health wise, he seemed to being doing better. He had been taken off the Lasix, and his lungs seem to be sounding better today. The nurses are slowly weaning down his respirator levels in preparation for taking him off the vent in the near future. We’re hoping that will happen sometime in the coming week. His weigh-in today was promising. He tipped the scale at 2lb 2oz. Only one ounce to go until we get back to his birth weight! The nurses said at the outset that they hope was to have him there by week 2. Hopefully, that will be the case tomorrow. Luc’s digestive system is performing nicely. They’re continuing to increase his food intake. He’s made to 13 cc’s. Not a bad little feat when you consider that he stared out at 1.7. As a result, he had what can only be described as a ‘blowout’ in his diaper. The nurses seemed to be very excited by it, although I’m not sure that was the case for Kate as she was responsible for the clean up.
John-o headed back to Syracuse this afternoon. It was a short trip and I was bummed that I didn’t get to see him. We just couldn’t get it together this time around. |
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Published: Thursday July 27th |
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To my disappointment, Luc’s vent settings had to be increased today. His blood gas last night showed increased CO2 levels so the team decided to increase his breath rate from 22 to 28. The Dr’s and Nurses think this is because Luc has secretions in his lungs and needs to take bigger, deeper breaths which he has not doing on his own. The increase in secretions can be caused by infection or from irritation caused by the tube. Thankfully the nurses don’t think Luc has an infection because he is still feisty and isn’t acting sick. They are going to give him a dose of Lasix to help with the secretions. As always, the nurses say “this is totally normal for a baby of his size.” That is mine and Beau’s favorite NICU saying.
In other more uplifting news, Luc’s feedings continue to go smoothly. He is up to 10 CC’s of breast milk and weighs 2 lb 1 oz, down a little from yesterday because Lasix is a diuretic. Luc will have another blood gas checked tomorrow, hopefully the CO2 levels will be down and we will be able to start weaning him off the vent. Keep your fingers crossed! Tomorrow, Beau kangaroos for the first time, which is sure to be an exciting day for all of us. |
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