Happy Valentine's Day

Seven years ago today Vince asked me to marry him...  there is nothing I would have rather spent my day doing than sitting next to my husband watching our son rest peacefully. 

The chest tube is doing its job and he is doing so much bettter today than he was yesterday. We know this will not be the last hurdle by far, but we celebrate the good days and pray that more come our way.

Not so good Friday the 13th

Charlie got progressively worse on Friday. His O2 and CO2 numbers were boarder line all Thursday night and into Friday. Enough so that they swapped him back onto the oscillating ventilator from the more conventional style one. His color got worse and he was just not very stable. We were a wreck all day just watching him get sicker, not better.

It finally came to a head and they needed to do something get him back on track. They decided to put his chest drain back in. In there words "a ton" of fluid came out of the chest cavity where stuff had been before surgery moved it all and now his body is filling the space with fluid. This was putting so much pressure on his lungs that he couldn't properly inflate them. He immediate showed signs of improvement and a few hours later into Friday night his gas levels where back were they wanted them to be. They were trying to get away with not placing the tube in because of the risk of infection and because he will most likely have this drain in for several weeks as his body naturally heals.

It is clear that he is still in a great deal of pain and they still cannot touch him without upsetting him. He just needs some rest now. Hopefully this is the corner we have all been waiting to turn and he will start to show signs of improvement. 

Rough start but a smooth finish

Charlie's honeymoon from his surgery came to an end last night. It is amazing how everyone is correct with that. We were told that the first 24 hours after surgery are great (the honeymoon) and then things take a few steps backwards. Well last night and this morning Charlie was not behaving. His stats we all over the place. They had to double the medication that puts him on a nice Caribbean beach and started him back on medicine to get his blood pressure up. There were discussions of placing him back on the oscillating ventilator but they have held off on that for now. They had to replace the central line that was in his belly button and to do so they needed to use an vein that was in head. So now he has an IV in his head. They also had to give him a mohawk to do it. They were kind enough to save all the hair from his first haircut :-)

He played much better this afternoon and into the evening. They were able to get him in a position that he looked really comfortable in. They had to rig up a way to elevate his ventilator tubes. Check out the picture. I also snagged a picture of the view he has from the window that is right by his bedside. Not bad.

He also started to urinate much more today. Which everyone was very happy about. He did not have much yesterday. And today before we left him he pooped for the first time after surgery. Not usually something to write home about, but it is a big deal for a kid who's intestines use to be up close and person with his shoulder! 

We read him his first book this afternoon. We selected the tale of the Tortoise and the Hare. He was able to move his arms while Patty read to him. I know he was listening. And just like the story I am confident that he know that slow and steady will win this race!

Holding his own...

Charlie is doing well considering the major surgery that he underwent just yesterday. His numbers were not quite as good as they were yesterday, but that was to be expected and the doctors and nurses are pleased with where he is. It seems like we are the only ones holding back! We know it is not a good practice, but watching the monitors with all the numbers going up and down is a hard habit to avoid. It is amazing that we now know what all those different numbers and lines even mean when just a week ago it was completely foreign to us. Charlie is resting very comfortably now. They have increased his pain medications and are keeping him fairly well sedated. He needs time to heal and re-stabilize now.

We were not able to stay with Charlie very long today, but it was for a very good reason. We are coming to realize that there are truly amazing people in the world who are completely willing to support perfect strangers. Last week when we knew Charlie was on his way, we put in a call to Deacon Nick from our parish to come to the hospital and baptize him. We have had this plan in place for months, but it just so happened that Deacon Nick was in the middle of coaching at a basketball game when the time came. He was able to tell his team at half time that he had to leave and why it was necessary and the 11th and 12th grade boys he coaches stopped to say a prayer for us and Charlie with Deacon Nick before he left. Yesterday Deacon Nick came to the hospital to be with us and wait for news from the surgeon. He told us that his team had been continuing to pray for Charlie and wanted to do something for him. They decided to have the team sign a basketball and Holy Family t-shirt and wanted to present it to us at their Senior Night game which was tonight. So, we went to Holy Family tonight for the game and special presentation. These are truly remarkable young men, who went out of their way to come over at the end of the game to thank us for coming to see them play. As we have said, we truly believe that it is because of the prayers of everyone, including these boys we do not even know, that Charlie is doing so well.

Neither of us ever thought that we would be so perfectly content just sitting and watching him, but we are. We miss him when we are home and the NICU has honestly begun to feel more like home than our house. The people there have been amazing and the nurses have begun to fight over who gets to take care of Charlie. Everyone loves him and we cannot wait until you can all meet him! All is is going to take is a little more patience...

God Held Charlie Close Today

Sorry for the late post. We just got back from the hospital. Today at 10 am Charlie had surgery to correct his diaphragmatic hernia. They decided to do the procedure right in the NICU without moving him. They felt is was far less risky that way. The team was incredible. He pulled through with flying colors. They told us that everything went as well as could be expected. 

When they got in there they indeed found that he had very little left of his diaphragm on the left/rear side of his body. They had to move the stomach, large intestines, small intestines, and other random parts (spleen & pancreas I think) back down into his belly. Then they used a Gortex patch to "build" him the rest of his diaphragm. Simply amazing if you ask me. They are just amazing and we are eternally thankful.

When we left him his stats were back at the levels that they were right before the surgery. His doctors are very pleased and they were continuing to wean him to lower ventilator settings when we left. Charlie is such a strong baby and he is doing very well they tell us. 

We are truly blessed. We are not sure what we have done to deserve such a great son. We are eternally thankful and overwhelmed with everyone that has left a positive comment, sent a card, or dropped off a meal. We do not feel like we deserve it, but we are eternally thankful for all the support. We have truly been blessed by God today. 

I have said all along that we should weep on the sad days and celebrate on the good days. Well today started out very sad having to leave Charlie as all the surgeons started to set up around him, but turned into a good day knowing that he is as stable as he can be right now and that his doctor's are pleased. Today we will and say thank you to God and to all of you who let him know we were in need. We are far from being out of the woods, but today was a big step in the right direction! 

I posted a few more pictures for you to see. Thanks again!

All ready but no surgery

Hello all. We just got back from the hospital and Charlie is doing great. They swapped out his oscillating respirator for the more conventional one that is required for surgery. Though his stats look great even with this change they want him to remain stable for the night and then do the surgery on Tuesday. So he is on the schedule for 1 pm Tuesday.

We were disappointed as we had prepared mentally for a very tough day and now we have to do it all over again tomorrow. Oh well, slow and steady will win this race. 

Thank you all for the kind words and prayers. They have lifted our spirits more than you can imagine. We will be in touch.

Surgery is set for Monday Afternoon

So Charlie (and his parents) had a good day. We learned today the doctors are satisfied with how stable Charlie has been that they are going to try the surgery tomorrow afternoon. Such a great surprise as we had prepared for weeks of fighting before they would fix his hernia. The kind nurses let us change a few diapers (just another chore for most parents but when you can't do anything for your son it made us feel like we were helping.) 

I have posted our first family picture along with the three generations of Vincent's (there are actually four but my grandfather has since passed on.) We are biased but we think he is just the most precious thing.

He has done so great so far. The doctors are just so pleased with how well he has done so far. They warned us that after the surgery is like starting all over again to keep him stable but at least for now it looks like we are almost through step one. We are 100% positive this is a direct result of the all the prayers that are lifting Charlie up closer to God. We cannot thank you all enough for your support and help over this very stressful time.  We can truly feel your love. We will let you know how he does.