Another good day

Well today as a pretty good day for Charlie. They stopped his fentanyl drip today, which possibly made him a little more cranky than normal. His last dose of his antibiotics was also completed today which leave only TWO things on his IV constantly. Way to go Charlie! He was pretty fussy all day, after sleeping most of the night for his nurse K. There is no way that he will sleep the whole night when he gets home, we are sure of that :-)

The big news of the day was that they wanted Patty to start breast feeding. We (really Patty) were able to try twice today. He doesn't really get it yet, but was able to get a few good latches here and there. The second time was better than the first as he cried much less. It was one of the first things that felt so completely natural.  It was so nice, and we hope he takes to it because he wants nothing to do with a bottle. When he got milk from mom today it appeared to startle him and make him more upset. We will be patient as there is definitely a reason an infant learns to do this right away, and not at 7 weeks old! He will learn to love food just like his dad!

Here are some pictures and few videos. We are so proud of our young boy. His rash is getting better and he is getting stronger every day. Thank you all for your continued prayers and support. We could not be there for Charlie without your love!

Five Fingers!

De-sensitize Charlie's mouth!

Filet-o-Fish!

Charlie is doing well

Saturday Charlie was taken off his vapo-therm. He is breathing 100% on his own with no help or O2. He is doing very well this skill needed for life! His rash is also getting better. They still don't know what it is but think that it is just "newborn rash." So he had a good day on Saturday.

He still struggles with taking his bottle and vomits almost whatever little he gets. He even vomits mucus when he hasn't had any food. So have a few different nipples we are bringing in to try and see if he likes them better, but unfortunately that won't help him keep anything down. I am sure that they will come up with some surgically implanted feeding tube plan if he doesn't show signs of improvement by early in the week. That scares mom and dad as we know that kids come home with these tubes. But we are there for him and whatever he needs us to do. 

He is just so perfect and looks so comfortable without any tubes taped to his head. What a very glorious Sunday to give praise! Thank you all the prayers and continued support. We will post pictures and maybe even another video later today...hopefully.

quick update

Charlie is still doing well with the vapotherm. He has developed a rash all over his face. They are thinking it is a typical "newborn rash" because we cannot think of anything he could have come in contact with otherwise. It has been slowly improving throughout the day, but still looks pretty bad. The biggest news of the day is that Dr. Roy suggested trying  nipple feeding today while they still figure out what they are going to do about his feedings over all. So, we got to give him some breast milk using the bottle. He gagged this morning the first time he was given the bottle. Then Diane, the developmental specialist, gave us some tips and he took the next 3 feeds successfully!! They were very small portions - only about 3 cc's each time (3% of what a typical feeding would be) - but he took it!! Only complication was the giant spit up after the last feeding we gave him. He had just calmed down from being upset though and probably had a lot of air in his belly. And the nurse gave him his Reglan right afterwards (it should have been given before the feeding).  We are happy with the progress though! He was weighed tonight too and clocked in at 10 lbs 4 oz. Hopefully we will keep gaining there too!

The Amazing Color Changing Charlie!

Charlie was extubated this morning and is doing well. His O2 levels have not been as high and steady as they were, but he is still fighting something off in his one lung. Luckily the vapo-therm can give him the support he needs without having to be on the ventilator. So, he is back in his big boy bed and wearing clothes again tonight. Hopefully the progress will continue. No news yet on feedings and what the plan is there.

In the chaos of everything that happened, I do not think that we mentioned that they ended up giving Charlie a couple of blood transfusions. His red blood cell count has been low the past few weeks, but they have been holding off doing a transfusion in hopes that his body would kick in and produce its own at some point. After his episode Monday they decided that it was time to help him out because he had enough to deal with. They gave him 70 mls on Monday and moved his RBC count from 21 to 33. After another 60 mls on Tuesday, his count was up to 44. 

I obviously do not have pics of the lovely shade of purple that he turned on Monday, but we do have pre-transfusion and post-transfusion color pics. He went from ghostly white on Monday to nice pinky red today. His face is actually a little blotchy right now, but they said that is normal for the stress he was under. He is quite the chameleon!

more questions than answers

There are no more real answers to what happened yesterday. They did a second chest x-ray this morning and it still showed some kind of shadow or blur in this left lung. They have decided to treat it as pneumonia although they are all still scratching their heads a bit. The question is, was there some kind of infection in his lung that could have brought on this episode, or as a result of the events leading up to this episode did he aspirate something into his lung therefore causing the infection? They seem to be leading more towards the aspiration theory, but have no concrete evidence either way at this point. 

As a result, Charlie is on two antibiotics right now and is still on the vent. They are having to keep him sedated because he is very aggravated by the tubes. He starts gagging and retching and then desats. Overall, he seems more comfortable than he was yesterday, but it is still awfully hard to see him like that. We now know the real baby in there and he is just not himself. When he does open his eyes and look around he looks so scared. But hopefully they will feel comfortable taking him off the vent soon - - maybe even tomorrow. 

Feedings have of course taken a back seat to this since it started, so we will be back to square one again. We are not sure what the plan of action might be. Dr. Ratner (surgeon) mentioned a few possibilities when he talked to us yesterday including a g-tube or tightening the valve between the stomach and esophagus to keep him from refluxing. We will have to wait and see and hope for the best. We will let you know when we know more!

If there is anyone out there who has experience with episodes such as this - going from completely fine and satting 99-100 with room air to stopping breathing all together with a dip in heart rate for no obviously apparent reason other than being upset (ie: by bath/new feeding tube) - please give us some insight. The doctors don't seem to quite know what to make of it and how to prevent it from happening again. Some answers would make us feel better!

Charlie hates Mondays already

So today Charlie decided that he wanted to be back in the more critical nursery. He had another episode similar to the his earlier one a few weeks ago and needed to be put back on the conventional ventilator. Just like before it came as huge surprise to the entire unit and especially to mom who, unfortunately had to wittiness the entire thing.

He had a normal morning and even came out to play with mom for a little while. It was bath day so Patty helped his nurse give him a bath. He hates baths so far but has had tons of them and all he does is cry but usually calms right down. After his bath his nurse put his feeding tube back in. Within minutes he started to turn bright purple. Soon he was not breathing and was very limp. It is a sight we do not wish upon any parent. Luckily he had the same nurse that had him the same day as his surgery. She is an incredible nurse, who is very good and normally does not work the less critical patients. Well God made sure we had our guardian angel because just by chance she was put with Charlie all day. She knew exactly what to do, got all the right people, and had him on the ventilator within minutes. 

Now Charlie has gotten accustomed to life off the vent, and hates the tubes in his mouth. So he fights and chokes and silent cries. They have had to really drug him up to make sure he is not fighting too much. But he is so immune to the sedation medicine that they had to give him Morphine. That did the trick as he has never had it before. Man are we in trouble when he wakes up!

Also, because is blood count was so low, they decided to give him his first dose of blood. They could not wait any longer for him to start making his own. Hopefully this does not set him back, as the only way your body knows when to start making blood is when your count gets too low. It is a tough cycle.

So it was a scary day, and they are not sure what brought on this episode. They are thinking reflux, but they are not sure of anything. The only thing they are sure of is that it comes out of the blue and both the doctors in the NICU and his surgeon are confused. They may try and take him off the vent Tuesday depending on how his x-rays look. But again, that is without knowing what causes him to stop breathing. 

Not a fun day, but we will keep the faith and ask God for a better tomorrow. Much love to you for reading and much love to Maxton and his family. You are all in our prayers. 

the journey

Charlie is doing well. He had a good weekend and is continuing to make slow and steady progress. Dee made a point of following him to his new nursery and spent the weekend with him. I wish I could understand why everyone's journey could not be as blessed as Charlie's has been. Baby Maxton (born with CDH earlier this month in Tennessee) whose parents we have been in contact with, passed away this weekend after fighting incredibly hard to beat this thing. It just really makes no sense to me. Please continue to pray for his family and all the CDH families struggling right now to make it through this journey.