Daddy's Little Wingman

Dee was working last night and convinced Daddy to take another try at holding Charlie. Although, it didn't take too much convincing since it was Dee who was offering and our faith in her is pretty high! It went very well and Charlie loved just staring up at his Daddy. Thanks Jen and Mike for the onesie! It worked out great for Daddy and Charlie's big moment!

Charlie is still running a fever. Dr. Marr ordered another blood work up last night and it still came back negative. The growth tests from the day before are still negative. There does not seem to be a clear answer as to what it could be. The only questionable element is the picc line and the doctors do not seem to think it could be that because it was put in after cultures came back negative. They consulted with Dr Ratner (the surgeon) and he agreed that leaving it in was sensible. So, no progress on that front. He was not as irritable yesterday though and actually stayed awake for hours, refusing to go to sleep for more than a couple minutes at a time - from about 4 pm to 11pm when we left. He just likes to look around and take everything in. He is afraid of missing out on anything!

something's not quite right

Charlie has been running a bit of a fever the past couple of days. They drew more blood work yesterday and initially it showed nothing new or concerning. They will continue to do the growth tests over the next few days. It is hard to believe that there could be another infection when he is on such heavy doses of antibiotics already. There is some concern for his PICC line. It is a little red looking and you can feel the line in his leg, but Dr Bode and Dr Miller both think this is just due to his sensitive veins, skinny legs, and fair skin. If they do end up having to take out the line, it will mean a trip to the OR to put in a central line. This isn't a huge concern, but we just wish they would decide one way or the other. He has been very sensitive and irritable in the past day too. I am not sure if this is because he is not feeling well or if he is going through some withdrawal from the fentanyl. He gets so upset though that it is nearly impossible to calm him down and he starts gagging on his breathing tube. Hopefully today will be an easier day for him!

traumatized

I am not sure who was more traumatized after our visit last night - Charlie or mommy and daddy. When we got there, his night nurse was adamant that Vince was going to hold Charlie. Please note, that this was not a topic that we had brought up with her at all. She had just finished checking his vitals and told Vince to go put on a yellow gown, so we just followed her lead. Unfortunately, she was not one of Charlie's regular nurses - she has only had him once or twice and has never moved him before. I am not sure what she was thinking, but the way she moved and then situated him in Vince's arms was not the way Dee has done it for me and things did not go well. He ended up extubating himself and his oxygen levels dropped right off. 

So he went right back in his bed and the nurse practitioner and doctor were called right in. The good news is that he did start breathing on his own right away and had over 30 breaths a minute. He was not moving quite enough oxygen to warrant staying off the vent though and they re-intubated him. So, Vince has sworn off holding him until the vent is gone; not that I can blame him though. It was not a pleasant experience. 

The only other big thing going on now are his feedings. He is doing okay. They are getting some aspirates (stuff left in his belly after is eats). They think it is a lot of spit though, so we are continuing to keep our fingers crossed that we do not run into any major feeding issues!

Charlie's a Big Boy Now

Charlie had real food for the first time today and so far so good! He had 5 cc's of breast milk this morning and had digested all of it by 1:30 when they checked before feeding him again. They also started him on Reglan to ward off any acid reflux or other belly problems. He has thrown up a couple of times today and yesterday because he gets upset and ends up gagging himself. He also got upgraded to a big boy bed today and has a comfy crib now. He seems very satisfied and is loving being on his belly.  You can see his fantastic three Stooges haircut in the last two pictures. It is shaved like that on both sides of his head!

unbelieveable progress today

When I got to the hospital this morning, Nurse Dee was all smiles! She loves when Charlie has good days! She tried to have me guess what was missing but I was so excited that she was so upbeat that I could not figure it out. They removed his repogle (the tube that has been sucking everything out of his stomach since he was born). He had a poopy diaper - which is a big deal in our world! He is peeing like a champ! All systems are working! His chest tube drainage had slowed considerably and they removed it this afternoon!! When I left at 3 to let Chloe out and meet up with Vince for our evening visit, Dee bathed him, weighed him (just a hair over 9 pounds with the last of the fluid retention and the vent tube and IV lines), and DRESSED him (first clothes ever!). And the biggest news yet... I got to hold him!! It was amazing to hold him close after three weeks of standing next to him and his bed. Dee let us stay through the 7:00 shift change and I held him for almost 2 hours. Vince didn't want to risk upsetting him with another move, so he was content to sit and watch and act like the paparazzi. After we got him back in his bed, Vince was able to change his diaper and got a surprise with another poopy present!! What a day for us and for Charlie!! :-)

slow and steady...

So far so good... things are quiet in Charlie-land! His blood work came back this morning and shows no sign of bacteria, so the antibiotics are working. He will be on them for 14 days total and they are considering today to be day 2 because they had increased the dose a little yesterday. 

He lost both his IVs through the course of the day, but they lasted the 24-48+ hours that we were hoping for when the infection started. Dr Bode really wanted to avoid any more procedures until things were under control. She was able to get another PICC line in today and this time they put it in his leg, right below his knee. I think this will be better than the one they had put in his head before.

Unfortunately, after how comfy and happy he was last night and this morning on his belly, the doctors nixed it. They are afraid that being on his belly will not allow his chest tube to drain properly and they obviously do not want it to back up. They are keeping a very close eye on his drain and want to remove it ASAP. Its still draining for now, but as soon as they think he doesn't need it they want it out. They really want to remove as many opportunities for infection as they can.

Charlie was due to move today to make room for the new CDH baby who is expected any time now. BUT, he had Nurse Lynn today and she has a way of getting what she wants. She is part of the ECMO team and knows what is needed for that set-up, so she convinced the powers that be to leave Charlie where he is and set the other baby up on the opposite side of the room. This took multiple other babies being shuffled around, but Charlie got to stay put. Where he is now is fairly quiet and she did not want him moved somewhere with more noise to aggravate him. He can be sensitive from time to time and this may get worse once his fentanyl withdrawal becomes more of an issue. So, we are very happy that he was not moved. It was very eerie to see the space across the room all set up and empty, just waiting. We know that is what our space looked like just three weeks ago and look what we have done so far and how far we have come! 

So, I survived staying home all day today and just went up with Vince when he got home. I missed Charlie though and could not help but feel a nagging sense of guilt that I was sitting at home when I could be there with him. Tomorrow Nurse Dee is on and I will be spending a good part of my day with her and Charlie now that we are caught up on laundry and dishes around here! Lets see how many of these good days we can string together this time!!

The Weekend Update

Overall, considering the scary chaos of the end of the week, the weekend was pretty quiet. All things considered, Charlie was fairly stable and is looking good. Saturday he was definietly still not quite himself. With the exception of the first few minutes we got to the hospital, he slept all day and we just sat and watched him all day. His color was coming back and his numbers were good, but he just needed some more rest. 

Sunday was defintitely a better day. He spent almost four hours this afternoon and evening awake and alert. His eyes are nice and bright again. He is wiggling around. You can just tell he is feeling better. We will get the results tomorrow from the blood work to tell us if the infection is under control or not. 

One of his IVs went bad overnight, so they had to put another one in his head. (The picc line was removed as soon as they realized he had an infection.) Chances are they will look into having a central line put in in the next day or so. The poor thing has evidently inherited his mother's crappy veins and has run out of places to be stuck! The arterial line also went bad this morning. So, now they are sticking his heel to get blood gas samples and other blood work. Suprisingly, it does not seem to bother him too much. His catheter was removed this morning and we are keeping our fingers crossed and they keeps up the good peeing so they do not have to put it in again! The surgeons came by and removed the steri-strips from his incision and it looks great! The scar is really going to be minimal! 

Since he has been on the conventional vent and able to be moved a little more, his swelling has gone down considerably. I don't think I realized how puffy he had gotten, but he looks so tiny now. AND, super nurse, Dee, decided that he was ready for his first big move tonight - - When we came back from dinner he was lying on his stomach!! I know this sounds so simple, but it is the first time he has been off his back since he was born! He looked so comfy and happy and finally fell asleep after his wide awake day! 

So Charlie is recovering and making good progress thanks to everyone's prayers and positive thoughts. Though, he (and daddy) were disappointed by the SU loss today - they didn't let it get them down for too long! Tomorrow we are expecting his bed to be moved to make way for another CDH baby who is expected to make his or her entrance, so please keep that family in your prayers as well. We know the road that lies ahead of them and the emotions that they are feeling right now as they wait. We are keeping our fingers crossed for a smooth and easy week!

update

There really was not too much change yesterday or overnight. Dr. Bodee did get the results back from all the cultures they sent out Thursday. His blood and fluid samples from both chest tubes came back with signs of e-coli bacteria. This was surprising to us initially as Charlie obviously has not eaten any undercooked meat lately, but Dr. Bodee explained that e-coli is a naturally occurring bacteria in the digestive system and his body with everything going on just wasn't able to keep it in check. A frightening side note is that e-coli can also be a marker for meningitis. They take no chances in the NICU and within a couple hours of getting the results they performed a spinal tap to check his spinal fluid for meningitis. The fluid was clear and initial tests show no signs of anything to be concerned about. That was a huge relief! Dr. Bodee tweaked his antibiotics slightly to target the e-coli more specifically. They seem to be working and his color is slowly returning, but they will run another blood test today just to make sure that the bacteria is under control.

Charlie's left chest tube also stopped draining yesterday. This was the one that was put in a week ago after the post-surgery fluid build-up. They were not sure if it stopped draining because the fluid levels were under control or is there was a clog in it. Because of the infection and the fact that the repair and gortex patch are on that side, they decided to remove the tube. There was a clot at the end of the tube when they took it out, so that was evidently the reason for the lack of drainage. We are expecting that the tube will have to be put back in somewhere down the road, but obviously we hope we are wrong! His numbers stayed pretty good afterwards - except his heart rate was higher than they would like. Overnight they kept him sedated and that helped keep his heart rate in check. They did another chest x-ray to make sure it wasn't fluid build up causing it and didn't see any problems. So, chances are its just the infection and him not feeling well that is causing the increase in his heart rate. Hopefully when we go up today he will be feeling better after having a full two days of antibiotics. We will keep you posted! 

Improving when we left

So it's never easy to see your child grey. It all happens so fast too. We called to check on Charlie Thursday at 6 am and his overnight nurse said he had great night and he was doing really well. The next thing we know we get a call around 10:30 am saying that they had to start him on antibiotics because of a possible infection and that he is not doing well. It was a tough day but when we left his side this evening he was resting, his had fever broken, and he had started to get back just a little bit of his color although he was still really pale. So he is currently resting and looking more comfortable than he did earlier in the day. Now I know why they call it the NICU roller coaster.

Another side note of interest. They told us that they might have to move Charlie's bed. His bed is set up in the area that they use for the ECMO machine. This is the heart and lung bypass machine. The reason they are moving him is that another CDH baby has arrived (in his or her mother still) and they need that area in case he/she needs to go on ECMO. They do have two ECMO machines at the hospital, but hopefully they feel confident enough moving Charlie knowing that he is at a lower risk of needing ECMO. 

Thank you for all the prayers and positive thoughts. We know God is listening and that he will get us all through these long nights!

Charlie not doing as well

I don't want to worry anyone, but Charlie has a fever today. They started him on antibiotics and took some blood and fluid samples. They have told us that there is no need to have a big bad conversation yet, but none the less we are worried as most parents would be. He just doesn't look right and they have had to bump up his ventilator settings to get his gas levels back.

We are praying that this is just another bump in the road. Sorry for the bad news but, I wanted to share with those that are following. He had such a great yesterday and overnight. But today has been all downhill.

much better day in Charlie-land

Charlie had a really good day today after his downward spiral yesterday. His numbers were great all day and Nurse Dee (one of his and our favorites) was very pleased with him all day! He only needed one extra dose of pain/sedation meds all day. Tomorrow they want to start trying to wean his fentanyl drip a tiny bit - - hopefully he will handle it well. They have already warned us that he could go through some nasty withdrawl once the meds are weaned, but hopefully we can ease him through it without major problems. 

Charlie was actually the hit of the C Nursery today because he spent a good portion of the day wide awake and looking around. Everyone was amazed because he is usually a pretty sleepy boy. It was really hard to leave him this afternoon to go let Chloe out and feed her because he was so alert! I felt much guiltier leaving him like that than when he is sleeping peacefully. Everyone loved him though and Nurse Dee even put a musical light up toy in with him to keep him occupied when she had to take care of his meds and chart. 

We got some more cute pictures to share. He is wearing socks now and loves blowing bubble around his vent tube!

Another Chest Drain

After a long day of Charlie's stats getting worse his doctors decided that there was just too much fluid on his right side and he needed to have another chest tube inserted. He just likes the balance of having one on both sides I guess. Similar to the one on his left he immediately drained a ton of fluid and started to turn his stats around.

They have told us that fluid is the correct thing for his body to produce right now as there are large gaps in his chest as all of his organs were moved down and his heart has started to shift toward the left. But the body just doesn't know when to stop and the pressure becomes too great and it hinders his lungs ability to expand and makes his poor little heart work twice as hard as it should. So they needed to do something. Just an speed bump they have told us. But still incredibly hard to watch your son fade all day long.

One positive is that in the process they needed to reposition his breathing tube. So I was able to snap a picture of his face with no clown smile tape! See picture. I also posted a couple other cute ones. He likes to sleep with his tongue hanging out!

That's it from our end. We hope you are all doing well.

Slow and steady...

Monday was another good day. They did switch back to the conventional vent in the afternoon and Charlie did great with it. He went right back to room air settings. By the night they were beginning to lower some of the other settings slightly as well. Now he is able to lay on his back again, so they can start moving him a little more. Hopefully this will help the fluid that is still filling him up. The chest tube still has a pretty steady flow. 

They increased his fentalyl drip in the morning because he was getting a little too rambunctious for his own good. Sunday night he managed to pull out his catheter. They want him to stay calm so that he does not hurt himself and gets some much needed healing time. 

Today is Vince's first day back at work, so I am off to the hospital by myself for the first time...  wish me luck! 

Chillin' Charlie

Cute pictures of Charlie opening his eyes and playing. Please excuse his swollen state. He has gotten that way because of the ventilator, all the fluids, and because they are not able to move him yet. He is still cute, although we are slightly biased!

Charlie had a good day today. His doctors wanted him to rest and stay stable today. He did. There is even talk about swapping him back to the conventional ventilator Monday. We will see though. Slow and steady.

We had a great moment today. Charlie decided to open his eyes and play with mom and dad as best he could. He was awake for quite a while and he had fun looking at mom and dad. I have posted the pictures. He also played with his tongue and enjoyed Dad's silly sounds every time he did it, which made him stick it out again! It was fun to finally see him in somewhat of an awake state. They have him on some pretty powerful medicine and his nurse was surprised that he was able to stay awake and move at all. That's our Charlie, he is such a strong boy! Boy are we in trouble when he gets his legs under him :-)

Oh won't that be a sweet day!

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.