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.

Pukes and Poops

Hi guys! Mommy and Daddy are pretty tired, so I thought I would help them out tonight! I have to be quick though because Dr. Bode is in charge tonight and she would not be very happy with this stinker-pot if she found me here instead of in my bed sleeping! 

It was a pretty uneventful day. I am getting used to my new place. Its not so bad. Some of my lady friends have been by to see me - Nurse Cynthia and Nurse Nancy were here last night and Nurse Lina came and held me for a whole 45 minutes while Mommy and Daddy went and got some dinner tonight! She is so nice (and I think she might be a little bit in love with me! - - I do seem to be irresistible!). I am really hoping Nurse Dee will come play with me tomorrow!

Today was a pretty messy day. I went through three outfits! Mommy used to always talk about how she was not a fan of bodily fluids, but she is handling it pretty well! Not only have I been puking lots (they won't even let me start eating like a big boy yet because I have been puking too much!), but I also pooped right in her lap today! It came oozing out all over her and the boppy pillow! She just cleaned me up and went on with holding me again. I will have to try to keep it in the diaper next time though! 

Well, I've got to scoot! I want to stop and see my girl, Baby K, before getting back to bed. She is doing pretty good! I hear she opened her eyes and looked at her Mommy and Daddy for the first time today! Thanks everyone for thinking about us and sending your prayers! Talk to you soon!

xoxo Charlie

graduation day

Charlie made the big move from nursery C to nursery D this morning! This makes him officially part of "the other end," away from the acute care end and now on the progressive end. We will probably continue working our way through the alphabet from here!

This is a huge step and it should be a very happy one, but I could not help but be a little sad today. Nursery C had become my second home these past 6 weeks. I felt really comfortable there and we have just struck up a really good friendship with Baby K's parents. Not to mention, it likely means we will have all new nurses now - no more Dee and Tana. (But Dee is trying to get moved into D for her shift on Friday - I am positive that she loves Charlie just as much as we do!) It also makes me a little nervous that he will not be getting the attention that he was now that there are fewer nurses in the room. And none of them know him and what makes him tick... Dee was nice enough to write a little note that is now taped to his crib with directions for how to best care for him - all the tricks she has used these past weeks. Oh well, I just have to have faith that it is all for the best.

As for how he is doing - it seems to be all good news! He is almost totally weaned off his fentanyl drip. They increased his feedings to 6 cc's per hour now. They plan to wean the vapotherm to 4 liters tomorrow. And if all goes according to plan, we may get to try breastfeeding for a few minutes tomorrow too! Hopefully the good news will continue even though he misses his girlfriend, Baby K! She is doing well so far, but has a haircut to match Charlie's now - only on one side though! :-) 

Kiss Me I'm Irish!

Happy Saint Patrick's Day! Charlie had another good day! His vapotherm was lowered to 5 liters this morning with no ill effects at all. He is up to a whole 4 cc's of breast milk over an hour. He did not puke up anything today!! Yesterday he had thrown up 3 times and it was a lot each time. It was mostly mucous, but it is still not great that he is puking. Its really just too much air in his tummy it seems because Dee was back today and made a point to pull the air out of his belly regularly and obviously things went better! He was the hit of nursery C today in his Irish green courtesy of his great IRISH Aunt Joan! :-)

Baby K had her surgery this morning and it went well! Things had been continuing to migrate since she was born and she ended up with pretty much everything up in her chest, including part of her liver. They were not able to close her incision, so they will have to go back and do that in the next couple of weeks. She handled it all very well though and had a great rest of her day. Hopefully the good news from her will continue!

good weekend

There really is not much new to post. Charlie had a good weekend and is continuing his slow and steady pace. The drip feedings are going okay. We are still at just 2 cc's every hour, but he is tolerating it. He still has some problems with the air and mucous in his stomach, but we were reassured tonight that it is typical baby stuff. His red blood cell count is still low. We are hoping his body will start producing some on its own so that he will not need a transfusion (and another IV for the transfusion). He was taken off his t-com monitoring this morning. This measured the CO2 in his blood and they don't see a need to keep close tabs on it anymore. He is looking better and better everyday!

We are keeping our fingers crossed that Baby K stays stable through the night in hopes that her surgery can be done tomorrow. Charlie is rooting her on and trying to set a good example! 

We got some good pics this weekend! Enjoy!

We were holding out for another Orange victory...

We got to bathe him and Nurse Mary changed all his tubes and tape, so we got to get some pictures of his naked face!! He was not very happy about the whole thing unfortunately!

A nice Sunday afternoon nap in the sunshine...

sunny days

It was a sunny day in Syracuse today. This time of the year blue skies are a very welcome thing after a long, grey winter. Charlie had a good sunny day and enjoyed the light streaming through his window.

The second bronchoscope procedure was this morning and they gave Charlie the all clear. The only thing they saw was some irritation on his vocal cords which is likely caused by the multiple intubations, extubations, and scopes in the past few days. 

His feedings are back to square one again. Last night they had started him back on just 5 cc's every 3 hours, but he spit everything back up throughout the night. So, today they did a couple of things. They put the feeding tube through his nose so that it will not gag him as much. It seems to work well, but nurse Tana said he did not enjoy it going in at all! They also started him on a drip feed as well. So now he is getting 2 cc's every hour through a continuous drip. It seems to be going well. He did puke once tonight while we were there, but it was all mucous-y stuff. He still gets a lot of air in his belly and swallows a lot of spit, and this does not agree with him. Hopefully it will get a little easier on him with time.

Tana went and found him the "Cadillac" of baby swings and he loved it! He spent hours in it, gliding back and forth and took a very intense nap for about 3 hours. He was a happy boy today and Vince even got a couple of smiles while he was holding him tonight - - unfortunately, I did not have my camera out yet! So, we are just continuing to pray that he continues to do well and that the mystery episode does not make another appearance this weekend.  

no tubes - take 2

Charlie was successfully extubated this afternoon and handled it very well. He got a bit upset, but settled easily. The ENT is going to return tomorrow to do the next procedure with the flexible scope through his nose. Hopefully that will go well. 

Baby K did not have a great day and her parents had an even worse day than she did. It was not so long ago that we were sitting and watching the numbers praying for them to change or to stay and seeing settings go up and go down. It is torture. We are really lucky - our journey has not been nearly as trying or as challenging as it could have been. There is no denying that there have been ups and downs, but it could be far worse. 

There are so many CDH families who have are who are currently fighting a tougher battle than we have had. There was a baby girl - Addison -  at another hospital who lost her battle yesterday and "chose wings over feet". I cannot imagine the pain that mother must have felt to take her baby girl in her arms for probably the first time ever knowing that in just moments her life would slip away from her. That is a pain no one should ever have to feel and it hurts me to just think about it. I never thought it would be possible to feel such strong emotions for people I have never met, but so many of you were strangers before we started this journey and have helped us so much along the way. It is amazing how such horrible experiences can bring people so close. We are praying tonight for all CDH families and everyone who supports them and in thanks for being blessed with Charlie and all his special ways. 

no answers

Charlie had his procedure with the ENT late this afternoon and (fortunately?) they were not able to give us any answers. This means that he does not have any weaknesses in his trachea that they could detect, but it does not give us an explanation as to why he was unable to breathe on Saturday. The plan is that they will probably extubate him tomorrow and try the vapotherm again. The ENT plans to come back and do another exam while Charlie is awake either tomorrow or the next day. 

In all, Charlie is handling it all very well. He has just been relaxing most of the day - both before and after the procedure. He seemed a bit overwhelmed by his trip to the OR - he was quite wide-eyed and looking around the entire time. I guess he was a bit upset on the way back up and was "screaming" his head off when the team got him back to the nursery. This is in spite of the fact that they warned us he would be a bit sleepy afterwards - yeah, right. Charlie certainly has become pro at fighting off the effects of sedation! Keep your fingers crossed that things go well with the extubation and hopefully we will have some more cute pics to post soon!

Charlie's first field trip

We met with the ENT resident at about 8:30 tonight and have a plan in place for the next step. Dr.Tony Mortelitti (who we have heard only good things about) is going to be taking Charlie to the OR tomorrow afternoon to perform a procedure to look around at his trachea and lungs and all that. They will extubate him and  use a scope with a camera on it and take actual pictures that they will have for us I guess - - something more for the baby book! They will re-intubate him before bringing him back up. Assuming that they do not find any problems (and the dr. seemed pretty confident that this would be the case), they will extubate him again after he has a day to rest and let any swelling go down. Then they will actually come back and use the scope again while he is fully awake to have another look around (Charlie is sure to love that!). So, hopefully we will have some answers in the next day or two - or at least be able to cross some possibilities off the list. It is a little nerve wracking to think about them taking him out of the NICU as he has never left his nursery, but we trust that we have the best of the best doctors taking care of this - - and maybe with a little luck Dee will talk them into letting her come along. 

So, continue to keep Charlie in your thoughts and prayers and remember his neighbor/girfriend Baby K and another out-of-town friend, Baby Maxton who are both putting up a really good fight against the CDH monster right now. It is an exhausting journey of ups and downs and their parents are pushing them along with everything they have. 

still waiting for consult

The ENT still has not made it to see Charlie yet. Someone was in this morning, but it was not who Dr. Marr wanted, so she sent him away! Hopefully the specialist we have been waiting for will be here tonight. Charlie is on minimal ventilator settings. He is not even bothered by having it detached when he is moved. He is still gagging on the tube a lot. He had quickly become accustomed to being able to move his head, and now when he does it just makes him gag. And he is getting a ton of air in his tummy which is not helping with the feeding process at all. He has been spitting up a lot of mucous and grossness, so they cut his feedings in half last night in order to come up with another plan of action - - possibly a food drip or putting the feeding tube through his stomach instead. We will see! Thank you for thinking about Charlie and hopefully we will have better news soon!

one step forward, two steps back ...the NICU dance

Since being taken off the vent on Wednesday, Charlie had been doing great. No problems to speak of. He was comfortable and happy. Unfortunately, today when we came in his was back on the vent. Evidently around 9am his heart rate dropped into the 60's and his oxygen levels were in the 50's. When the nurse (someone who has never had him before) went to check on him he was arching his back and seemed to be choking. She suctioned him, but nothing improved, so she called for the doctor who tried to give him some additional oxygen and pressure through the mask, which also did not seem to work. So, they had to re-intubate him. He has been stable since then with vent settings that are very close to where he was Wednesday morning before being extubated.

The doctor's initial thought was that it could be tracheal malaysia. This is a problem where the trachea is not hard enough and it collapses. When Dee came in this afternoon though she did not think that he had many signs pointing to that. Regardless, he will have an ENT come on Monday to see him and we will see what they think. Dee's thought is that he may have had a reflux episode that scared him into the state that he ended up in. This seems to make sense, but we just want an answer so that Charlie can continue to make progress from here. What made this more difficult to deal with was that we had not been called, so we had no idea before we walked into his nursery this afternoon and saw him - an oversight on somebody's part. So, it was a rough day for all three of us. Please keep Charlie in your prayers as we know you have.

take a deep breath...

Charlie is one month old today and has accomplished his next big step. He is now breathing on his own without a ventilator. He is getting a little support from the vapotherm. This can give him oxygen, but he is pretty much at room air still. Its main purpose for now is to push pressure up into his nose that helps his lungs inflate a little easier. He is taking to it very well and his numbers have been great all day. He has been a little fussy, but we think it is really because he is a little traumatized by the events of the day. He is super cute though! P.S. We think his eyes might be turning blue, but we will have to wait and see!

Charlie's new girlfriend finally arrived last night. Baby K is his CDH partner in crime and she is beautiful. All the nurses approve of their courtship! She is holding her own and seems to be doing pretty well. We talked to her mom and dad and they seem pretty overwhelmed, but it is hard not to be. Unfortunately they are not even from this area, so their journey will be a bit more challenging in that respect. Please keep them in your prayers.

very close to our next big step

Charlie has had a great past few days. They have been able to make considerable decreases in his ventilator settings and there is talk (cross your fingers and knock on wood!!) that the vent may be gone in the next day or two!! He will then move to something called vapotherm that will give him some help inflating his lungs so that he does not have to work so hard right away. It will be much more comfortable though because it goes through his nose and not down his throat.

Feedings are also going really well. He is up to 9 cc's every three hours through his feeding tube. This is really only a 10th of what babies his age typically eat, but it is progress! They are increasing 1 cc every shift now and he is still handling it really well. 

It looks like Charlie will be moving after all as well. Things in the NICU have gotten a little busy lately. There was a set of quads born this afternoon and the CDH baby that they were expecting a couple weeks ago is truly on his or her way now I guess. And there is a set of triplets expected any time now as well. So Charlie is going to just be moved from one side of the room to the other. It will be a little noisier over there, but hopefully he is settled enough now that it will not irritate him too much.

Here are some recent pictures from the weekend. The first ones of his face show the newest Charlie phenomenon. It is called Harlequin - half his body turns red. He gets a very evident line right down the center of his body and it is not always the same side. It is just a nervous system reaction and nothing to worry about, but it is strange looking! :-)

Charlie is doing well

Charlie's doing well and his doctors are starting to reduce his ventilator settings ever so slowly. He appears to be comfortable and only has a few fits everyday that require medicine to calm him down. We were able to help change several diapers and even gave him a sponge bath this afternoon. So things for us and Charlie are going as well as they can right now. Thanks to everyone for their prayers and positive thoughts, it has given Charlie and us the strength to get through this.

He has really made incredible improvements. CDH babies are special, strong, and individuals. Charlie is no exception. Here are a few videos to show you what he is like. The older one was taken a few weeks ago when he was still on the oscillating ventilator. That is about all the movement he would make in single day. The newer videos show you how awake he can be, and spends hours just looking around. One video shows him with the hiccups...they look like they hurt, but he got them all through Patty's pregnancy and still gets them often!