Amazing Grace

Through the grace and power of our saviour Jesus Christ,

the passion and dedication of an entire team of doctors and nurses,

the unconditional love of his parents,

the love and support of his family and friends,

and the prayers and encouragement from people all over the world,

 

Charlie has made it home.

 

We are so thankful and know that we are truly blessed to be with Charlie on this day. Thank you to everyone that offered a prayer, sent a card, cooked a meal, let the dog out, or just encouraged us to keep going. We know that Charlie would not be here without your love and support. We are eternally grateful.

 

Know that you are all in our hearts as our family spends it first day together...at home. We love you all.

Bye Bye Baby K!!!

Kayla went home yesterday with her very excited parents! They are doing well so far! We snuck Charlie over to her nursery before she left so that they could finally meet. Charlie was a little sad to see her going, bue Kayla looks as content as can be!

"THE" post

So this is the post that I have been looking forward to/dreading for months now. We know we are close now and that the end of our NICU journey is near. So, we are obviously ecstatic! We are also very apprehensive though. Its a whole new adventure we are about to embark on - one that is overwhelming for any new parent, much less parents who have been through what we have. So, that being said, please do not take any of what we are going to say personally. 

We want to let you know that when that fabulous day comes and they say we are free to go, we will be secluding ourselves for some time. This is for a couple of reasons. One, we need a chance to just be. We have never been just the three of us and we need that. We are not trying to deprive anyone of anything, but we need some time to be a family on our own. And secondly, as any CDH parent can attest to, being the the real world with real germs is very scary. ***If Charlie gets a cold, a virus, a bug - it could kill him, or at the very least, make for a major setback or land him back in the hospital on the ventilator. He only has one good lung. If he were to get an infection in that lung... I am sure I do not need to point out the obvious. So, once we do have visitors, please stay away if you even think you are coming down with something. 

In all honesty, we were told to keep him secluded for up to  year by Dr. Bode. The nurses painted a somewhat less frightening picture, but still say no kids, no crowds, and good hygiene are an absolute must. So, unfortunately Charlie is not a "normal" baby quite yet, and maybe won't be for sometime. Its very scary and the thought of coming home with that hanging over our heads is very overwhelming, but we are just so thankful that at least it is not winter time anymore! But again, please do not take any of this personally when we come across as overbearing and protective. Its just the way we have to be for Charlie's sake. 

happy tears

Charlie continues to amaze us with his will to eat and improve. He took 85 cc's from the bottle this morning and a little more than that later this afternoon. His breast feeding attempts are improving every time as well! Please keep in mind that a week ago I spent the day in tears because he refused to breastfeed and just over a week ago we were forcing him to take 5-10 cc's from the bottle.

When we started this NICU rollercoaster, Vince used to say to me in the car on the way home, "Laugh on the good days and cry on the bad." And that is what we did. We can see the end in sight now and as much as we don't want to admit that we ever believed otherwise, we finally feel like we have made it and beat this thing. 

We left a little early tonight and decided to tackle the mess that the nursery has become since we will have to be able to use it sometime soon. Between thinking back on putting the nursery together when we were still expecting and reflecting on all the points we have been at in the past year and flipping through the piles of cards from people congratulating us, wishing us well, and urging us to keep the faith - - it was all a little overwhelming and there were some tears shed tonight. But they were happy tears. It is unbelievable to think about how far we have come; how far Charlie has come! We have come in contact with so many amazing people and experienced things we never could have imagined. But we did it and it is such a surreal feeling to be at this point now and know that one chapter is almost over and another will be just beginning. 

great feeding day

Charlie took 5 feedings today: 2 bottle and 3 breast. Each bottle was a full 60 cc's - he is allowed 75, but has never taken that much. And the breastfeedings got progressively better as the day went on. We have been turning his feeding drip on at 10pm, but he was wide awake and hungry so we decided to throw in another real feeding instead. It was the best he had ever breastfed! He did lose 20 grams since his last weight check on Wednesday, but that it not much. And his glucose checks have all been good, so his blood sugar is holding steady. SO... keep your fingers crossed that our upward trend continues! :-)

another day in Charlie-land

Charlie took four successful feeds today. The lactation consultant decided that our best plan of attack is to try our best to make sure he does not get too tired as the day goes on so that he can get the most volume possible. So, we alternated breast and bottle feedings today. This will also allow us to get a more accurate measure of how much he is taking in. Both breast feedings went pretty well and he took 53 cc's at the afternoon bottle feed and 40 cc's at the evening bottle feed. We are still working our way up, but he is trying his best! We think the ultimate intake goal for his weight is 105 cc's per feeding. The pump will be running at 25 cc's per hour for the night and that will be slowly increased over the next few nights as well. Other than that we are just praying for weight gain at his next weigh in Saturday night and for feeds to keep on keeping on!

Baby K made the big step into line free life today! Her picc line was pulled and she is well on her way to proving that she deserves to go home! Still working on feeds, but all the cool kids are! We keep cheering her on, just as she cheers on Charlie! If you haven't yet, check out her blog (Kayla Mae in the list to the right) - - she is a cutie! :-)

Charlie's Way or No Way At All

Today was a big day in Charlie-land! Last night his NJ tube got clogged and they were not able to run his feeding drip through it. Luckily, Nurse Cynthia, who loves him like crazy, was with him last night and she was able to put in an NG tube and crossed her fingers that he wouldn't start puking because of the drip running into his stomach. Charlie impressed her and did not puke at all. So, the surgeons came up to check on him first thing this morning because they had been told his NJ was malfunctioning. They decided there was nothing they could do and it would have to be pulled. And since Charlie was handling the drip going right into his stomach Doctor Gross decided to pull the NG as well and let him eat on his own with no more drip!! He did amazing today and breastfed 3 times and took 40 cc's from the bottle tonight. After seeing how tired real eating made him, it was decided (with some persuasion from Dee) to put an NG tube in so that they can just run drip feedings at night so that he can rest. So, he had one tube free day with the promise of more to come when he gets strong enough to sustain himself without the drip at all! 

Breastfeeding did go well today and we were able to work with the lactation consultant again. She is happy with how he is doing, but he has to do it his own way! He will not let me sit down at all during his feedings. He weighs over 10 pounds now and gets rather heavy! I am going to have arms of steel by the time we get this feeding thing perfected! We were also moved (AGAIN!) today into Nursery F. The move was not a great one for feedings and he seemed to be doing better when we were in isolation. It was quieter and darker and he was able to focus more. Hopefully we will still be able to make some progress despite the location change. 

So, we know what everyone is wondering now... and it is something that we have purposely avoided ever talking about... When will be going - - - - ? No one says the word in the NICU. There is a bit of superstition around using the word. Instead they talk about going to "the zoo" or "the mall". There are no firm plans, and we didn't ask - it is almost better just to let it happen. But we do know we are on our way. Feedings have to continue to go well and increase and Charlie has to continue to grow and gain weight. That is basically it, barring no further setbacks. So we will continue to follow Charlie's pace - it has worked so far!

Charlie has the greatest pout ever! :-)

Thanks for the onesie Aunt Monica! It's perfect and everyone agreed with it!

Charlie's NICU Suite

Charlie made another move today! After much debate and much chaos (babies were moving all over today!) he was moved into his own little room by himself. It is technically an isolation room and, thank God, there is no real reason for him to be isolated, but it was the best space for him right now I guess. It should be interesting to see if he sleeps better or worse with it being more quiet. He actually sleeps really well at night as a rule, but during the day he just cat naps and get progressively more tired as the day goes on. His level of tiredness has a direct impact on his eating, so we are hoping he will sleep more soundly during the day now. 

He did well today with his feedings. He is still only allowed three, but he can eat as much as he wants at each now. The first breastfeeding was only ok, but the second one went great! And he took 28cc's from the bottle with daddy tonight! He started sucking the bottle so aggressively at first that he actually choked himself a little. He recovered though and continued off and on for a little while. Feedings are definitely a slow and steady process!

For those who have not heard yet, Baby Kaden (from CA) lost his battle with CDH yesterday after a long hard fight. We cannot imagine the pain and confusion that Kristi, Craig, and their family must be feeling. Please pray for them and pray that someday we will find a way to beat this horrible beast of a defect so that families will not have to deal with this kind of loss. We are so blessed and hopefully will never forget that. We have been changed for the better because of it. Godspeed Kaden...

Charlie is hungry!

Charlie redeemed himself today and made us proud! He took all three of the feedings he was allowed - one bottle and two breast - and still no spitting! We worked with the lactation consultant and she was really able to help us. The plan is to do exactly what Charlie wants for now to get him used to the concept of breastfeeding and then we will tweak things later. He is rather particular and a bit of a stinker though. The only way he will really latch on and suck well is when I am standing and holding him in front of me. Let me tell you, 10 lbs 2 oz gets heavy really quickly! He did a great job though and actually fed for far longer than the 5 minutes he was supposed to be limited to - we were not about to stop a good thing! Plus he really was acting hungry, which is a new thing for him! I talked to Dr. Ratner (surgeon) this afternoon and the plan is to wait and see what Charlie can do before we make any decision about the G-tube. We are very happy the the doctors are willing to practice a little patience and do things on Charlie time! Wish us luck for tomorrow when we attempt breastfeeding by ourselves! The consultant has the day off... :-\

frustrated mommy

Sunday was a very frustrating day with Charlie. The doctors decided that he could start to breastfeed two times a day and take one bottle. We thought this was a great step and progress was being made. Charlie had other plans though and decided that he wanted absolutely nothing to do with breastfeeding. He cried and fought during every attempt - - very frustrating! But then feeling frustrated seems so silly because after giving up on the breastfeeding for the day he took 26 cc's from the bottle and kept it all down! 

But it seems impossible not to become aggravated with the situation because it is supposed to be such a "natural" thing. Nothing about this has been "natural" by any means. I have exhausted myself pumping for 74 days now. And it drives me crazy when everyone quizzes me on how much I produce. First of all, I do not know what is normal or adequate. And second of all, it is never consistent. Then, people insist on asking, "Have you gotten that "let down" feeling??" No- I haven't. I am feeding a machine, not a baby and my body is not responding as nature intended! And then I just end up feeling like I am inadequate at this whole thing or that I am missing out on something or I worry that my body will not be able to keep up this pace and I am going to stop producing all together and then we would have to take a chance with starting Charlie on formula instead and hope that his stomach will handle it...  oy... Sorry for the rant, but I am frustrated... I am going to work with the lactation consultant today, so hopefully I will have a more positive update tonight!

Please continue to pray for Baby Kaden - he is continuing to make progress slowly, but surely! And please say a little prayer for Baby J, the third Crouse CDH baby that was born a few weeks ago. I overheard his mom saying yesterday that he has gotten an infection somehow. I have been told by the nurses that the little NICU boys are much slower than their girl counterparts, and from what I have seen, that seems to hold true (as Baby K was told she may be going home in a couple of weeks!)  :-)

priceless

Charlie successfully breastfeeding for 4 whole minutes - simply amazing!

Charlie taking 19 cc's from his bottle with no spitting - so exciting!

Nurse Dee crying tears of joy when she came in tonight and heard of all Charlie's progress  - priceless!

It never ceases to amaze us that so many of Charlie's nurses really love him and truly advocate for him just as much as we do. It is something that we never really expected, but do not know what we would do without. We have been so blessed to come in contact with so many wonderful people throughout this journey - not only our super nurses, but the doctors, our blog followers, Baby K's parents...  Our life has really been changed for the better because of our CDH experience!

Charlie-land successes

Charlie never ceases to do things his own way. He is "allowed" two nipple feeds a day - either 5 minutes of breastfeeding or 5 cc's of breast milk from the bottle. Typically what happens is he fights and fights and fights - crying and pushing away - and sometimes gets some milk and sometimes manages to swallow that milk. We have had a little more luck with the bottle than the breast, but not much. 

We tried breastfeeding this afternoon and it pretty much went just like that leaving mommy disappointed and Charlie completely spent and passed out cold. This evening when we went back he was fairly calm, though a little fussier than normal. His nurse told us to give the bottle a try because she had 10 cc's left from filling his drip. We figured we would see what we could get him to take. When we put the bottle in his mouth instead of crying and turning away and throwing a fit he started sucking and continued to suck for the next 30 seconds, drinking every last drop of the 10 cc's that was in the bottle! He probably would have taken more if it were there. He had yet to puke it up when we left around 10 - so with a little luck we have one very successful feed under our belt! Granted 10 cc's is nothing in the grand scheme of things, but for Charlie, it is awesome! 

He loves his new mirror and admiring himself in it!

And now what you have all been waiting for...

Our new favorite Charlie pic - happy with no clothes right after puking all over!

 

Charlie's first tubby bath

warm and cozy after his bath

Charlie's first Easter

practicing his oral stimulation with a Saf-T-Pop - he loved it!!

Quick Update

So the Internet is still giving us fits (someone is coming to the house today to check things out) but we wanted to give a quick update on what was found on Wednesday with Charlie's scope procedure. So they took a camera and went down his esophagus, into his stomach, and peeked into his intestines. The results look fine. They found no inflammations, ulcers, or places that were getting bothered by his acid reflux. So that is good news. They took several biopsies to test for things, but they don't expect to find anything. They were unable to test the motility of his stomach during this procedure unfortunately.

So they think that his stomach might just be too immature to handle his food and that he needs to grow and get older. They told us most likely to expect a surgical feeding tube to be implanted within the next few weeks. So at least we can start to prepare mentally for that. We have read stories that CDH kids may need feeding tubes for quite a while. Does any CDH parent have experience with such a feeding tube? At least this will mean he will have nothing on his precious little face :-)

So we are doing well, and Charlie is doing great...he is just so strong...just needs to learn to eat and get a little more mature! That's it for now...talk to you all soon!

Change of plan...story of his life :-)

Hello all, dad here. So Patty asked me to post an update to let people know that Charlie's scope procedure is being held off until tomorrow at 10:30. Nothing is wrong, I guess they just can't fit him in today.

We got all excited yesterday because he took his 5 cc bottle in just 5 minutes. But the one last night and one this morning he wanted nothing to do with. So that was disappointing. The developmental person came by this morning and re-assured us that because he took it so well yesterday proves he knows how to do it. He is just being told by his throat and stomach that he should not do it. So hopefully we can get some answers about how we will need to proceed.

Love you all...you are the world to us and keep all three of us going!

next step in the plan

Charlie will be going today to have a scope put down his esophogus to have a look at the esophogus and his stomach. Dr. Kardoo, a GI specialist, came and looked at him yesterday and agreed with Dr. Marr and Dr. Bode that this procedure could give them some answers. We still do not know if his stomach is emptying properly. He has been on the erthromycin, but we have not been able to get enough food into his stomach to know if its motility has improved. And there is reason to believe that his esophogus could be like "raw meat" - as Dr. marr put it - due to the reflux. This would make him not want to eat/swallow because of the pain and could be the source of the old blood that he is still puking up. So hopefully after this we will know where we are going in terms of what meds he should be on and what interventions (feeding tubes) will make the most sense for him. Luckily Dee is with him today, but please pray that everything goes well and that he tolerates it all with no complications!

I have not forgotten about the pictures I promised to post, but the computer is still giving me fits. I am hoping it is not the computer itself, but we will see! Hopefully I will get them up soon because there are some great ones that I cannot wait to share!! :-)

Charlie is "Eggs-tra Special"

Happy Easter! Charlie had a decent weekend and we feel like we have a little more direction and understand where we are going. We knew from the beginning that feedings were going to be an issue and would become a bump in our road - as we got to the end of last week, we were starting to feel a little overwhelmed with the pace things were moving because we did not really understand what the intentions were. With the removal of the picc line and the regular increasing of the drip feeds, we were starting to worry that we would be pushed out the NICU door without feeling like we had a good grasp on how to eat for real, without a feeding tube. Going home with a feeding tube is a possibility, but Dr. Marr assured us it would not be the NJ tube that he currently has. If they feel it is necessary, they will have a GJ tube surgically implanted. While this is a surgical procedure, it is not a tube precariously taped to his face that we would be constantly worried about messing up. And we will be giving more attention to real feedings as well in the coming days, weeks. This is reassuring to us!

In positive feeding news, Charlie did take 2 feedings yesterday and 2 today - about 5-7 mls each time without any spitting afterwards. It is not an easy process and takes forever, but it is progress! We are hoping it continues and that maybe we can try out breastfeeding again this week too. His drip feeds have been held at 22 cc's per hour for the weekend because he had a huge puke Saturday afternoon, but he seems to be doing ok now! There is some speculation that he may have some damage to his esophagus due to his reflux problems. This could explain part of his aversion to eating and the old blood that he keeps puking up. Dr. Marr changed his meds to a stronger antacid, so hopefully that will help.

Charlie also had his first real bath in the "tubby" Saturday night! He has not been able to be submerged because of his picc line, but now... He actually really like it! It was a bit if a shock initially, but he settled right now and seemed to enjoy the warm water. Nurse Cynthia was a fantastic help and made it a positive experience for all 3 of us!

So, we will continue plodding along! We hope everyone had a nice Easter. We had an unexpected visit from Deacon Nick this afternoon, so that was a nice surprise on Easter! Charlie got his own special Easter blessing!

Please keep Baby Kaden in your prayers. He was placed on ECMO a few days ago, and is having a rough time right now. He needs all the love and prayers you can spare right now.

I do have pictures to post, but either blogger or the internet are giving me a hard time... so I am giving up so I can go pump and go to bed. I will get them up as soon as I can! :-)

Nothing new to report...

Here's some pics...

moving right along

Charlie time seems to be picking up steam - somewhat. His drip feeds are going great. They are up to 17mls per hour and are increasing it by 1 ml 3 times a day. Yesterday he said "So long!" to his IV nutrition (TPN and lipids) and traded in for a dextrose drip with the added couple of things he still needs. His total for fluids needed is 30 mls per hour, so he is getting more than half from the breast milk drip now! This is so good and Dr. Bode feels so confident in Charlie's progress that her plan is to remove his PICC line tomorrow and have him just on the feeding drip. Getting rid of the PICC line is good for avoiding any possible infection that could come from it, but makes me a little nervous in case they need a line again. We trust Dr. Bode though!

I wish I could say that his bottle feedings were going just as well, but they are not going at all really. He is supposed to be trying 2 feedings a day, 5 mls each. He is still randomly spitting though (not related to the feedings, just mucous). So, if he spits around a feeding time, we have not been trying the bottle at that time. If he is sleeping during a feeding time, we do not wake him to try. So, needless to say, he has not tried much. We have not managed to get 2 feeds in one day yet. But we keep hoping that it we will start to make some progress soon! We keep telling him to watch Baby K who takes her bottle like a champ and is doing fantastic with feedings (slow and steady!!). Hopefully he will follow her example so he can be rid of the tube up his nose! Or maybe he will still be sporting the tube when he brings Baby K to the prom in 16 years! :-)

trying the bottle again

Just a quick update - they decided not to do the second barium procedure today after all. It is a little frustrating when we cannot make a plan and stick with it, but they decided it was not necessary right now. Instead they are giving Charlie a chance to try the bottle out again. He was allowed two feedings today with 5 mls each. The first one he completely refused, but the second went okay. We tried a new bottle tonight (a Nuby one), so maybe that made a difference. As of when we left, he had not puked it up yet! He has been really active, batting at the toys that hang in his crib and kicking his feet around. Even with his hands safely secured in mittens (that are actually socks), he seems happy and playful! Hopefully we can keep making progress with this bottle thing!

Status Quo

Charlie had a pretty quiet weekend. His feedings are being increased by 1 ml every 12 hours through his J tube feeding drip. He has been handling them really well and he has been a happy baby all weekend. He has his next procedure tomorrow to see how his belly is functioning. If that looks good then we should get the thumbs up to start real feedings again and give his stomach another try. When we left Dee and Cynthia were trying to fanangle things for tomorrow to get a super-nurse with him for the day. This is probably more for mommy than for Charlie, but it is greatly appreciated! Hopefully we will have some more good news to share tomorrow night.

Please continue to keep baby Kaden in your prayers. He is holding his own, but did have to go on ECMO. His family is playing the ultimate waiting game now to see what the future may hold for their little boy.

Moving on up

First an foremost, may we congratulate Craig and Kristi Kuehl on the birth of their amazing son Kaden. He has CDH and our prayers go out to him and his family. For those that would like to follow their story you can find a link to their blog on the side of ours. Fight little guy, fight! 

Now for a Charlie update. He was moved to nursery D on Thursday, back to the less critical area and here's praying that he keeps moving the positive direction in the NICU. The feedings through his NJ tube has been going pretty well. He is up to 6 ml per hour which is about 20% of what he should be getting. They are increasing it 1 ml every 12 hours, so we should be getting to a substantial amount fairly quickly. They are holding off on any oral feedings (breast or bottle) until next week in hopes that his stomach will have a chance to kick start. But overall he is doing just great, smiles often, and just loves to be held and talked to. We love to accommodate his needs!

So there are three CDH babies in our hospital currently. Baby K, who is so amazingly strong, beautiful, and is doing fantastic. We have become good friends with her parents and they have taken a liking for Charlie as well. A third baby was just born this week with CDH this week and is fairly stable awaiting for surgery. We have not had an opportunity to meet the parents, but we hope to share our lessons learned with them. The nurses have told us that this is unusual as they normally only see 4 or 5 cases of CDH a year. They have already had two, currently have three, and it is only April. God bless them and the wonderful work they do bringing hope to us all. God truly works through them!

CDH Awareness Day

March 31st was CDH Awareness Day. Here are some pics from our day!

what a day...

Charlie had a very full day today. He started with a trip downstairs for an upper GI. The baby who will not latch onto a nipple for anything while up in the NICU sucked down a full 12cc's of barium like it was his job! Unfortunately, what they found from the procedure is that things are not moving out of his stomach as fast as they should and therefore, all the barium had to be pulled back out of his stomach through an OG tube. They are starting him on a round of erythtomycin (an antibiotic) which should jump start his stomach some how and make it work more efficiently.

Once he recovered from that - he was a mess with barium all over his face - he was finally resting nicely in mommy's arms when they showed up to do an ultasound of his belly. We have not gotten any results back yet, but I heard mention that they were looking at the gall bladder for some reason. We will see what comes of that.

THEN, Dr. Marr was back on today and is being a little more agressive with Charlie and his feeding issue. He is getting jaundice from being on the IV nutrition for so long and she wants to get him weaned from it ASAP. So, we took another trip downstairs this afternoon and had an NJ feeding tube put in. This tube goes from his nose, all the way through his stomach, and right into his intestines. He fought the nurses and technicians off in true Charlie fashion, but they managed to get it in eventually. His anatomy was a challenge as things are not exactly where one would expect them to be. They put it in with the help of x-ray some how. I think Charlie will be glowing by the time he gets home because of all the radiation he has been exposed to. It is very important that this tube stays put on his face because it is a rather involved process putting it in, so he is all taped up again. 

Needless to say, Charlie was pretty wiped out after today and he will probably sleep very well tonight. At least we hope he does!