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!