growing boy...

Charlie was weighed again yesterday by our public health nurse Gloria and he packed on another 11 ounces this week! He is up to 14 lbs 1oz!! You can really see the weight gain on him too. He is getting little rolls on his arms and legs and his face is rounding out. He is really just getting bigger all around. She measured him at 26 inches - though I do not know how accurate a measurement it was due to his constant wiggling! He is not a little baby any more - - he is really getting to be a big boy!

Developmentally he is right on task with everything, with the exception of rolling over. He has yet to make that move. He does twist and contort his body from side to side and if he ever does roll over I am sure it will be completely accidental as he hates being on his belly. I am not sure if it is something related to his repair or just his preference, but he SCREAMS and arches his back, pulling his head, shoulders, and legs up off the floor whenever you put him on his belly. It is a little better when you prop him up on the boppy pillow, but it still doesn't last too long!

We are getting down to the end of our supply of frozen breast milk and unfortunately I am just not producing enough through pumping to keep up with what he eats. He only breast feeds one or two times a day at best and I pump through the rest of the day. He just is not great at breast feeding. Everyone says how breast feeding is the most natural thing, but it certainly does not seem that natural! I did just talk to the pediatricians because we were worried about starting formula for fear of introducing true dairy to his system. Vince has a fairly severe milk allergy (an actual allergic reaction - swelling and anaphylactic shock - not just upset tummies) and we know there is a small chance of passing that on. To be safe, the NP at our office wants us to use Isomil, a soy based formula for the time being. I am not sure when we will actually test the waters, but this is the solution for now! Hopefully all will go smoothly and we will be able to continue to report weight gains!!

I love it when daddy dresses me! Go SU!!

Its so much cooler when you wear a washcloth on your head!

Mommy's little cabbage head!

Whew! Strawberry picking is hard work!

Grocery store convenience is totally worth the extra money guys!!

This is the best toy ever!!

Look at the post from one month ago below

("Still Slow and Steady" May27th)

Do I look any chubbier???

Here kitty kitty kitty...

Why hello there Stormy... come a little closer...

July 15th is only 22 days away!!

http://lettersforcdh.blogspot.com/

Do you know what is going on July 15??? (Other than Walt's birthday, of course!) We are trying to bring huge attention to CDH and get the word out there about the devastating effects it can have. You can help us in a really easy way! What you need to do is simple:

1. buy blue envelopes

2. on the back of the envelope, write a message and the web address of our blog, or any CDH blogs you follow (Go to http://lettersforcdh.blogspot.com/ for a list of messages you can choose from!)

3. mail your envelopes to anyone and everyone you think needs to know more about CDH

***In particular, Ellen DeGeneres and Oprah Winfrey***

The reality is that CDH is just as common as spina bifida and cystic fibrosis, yet had you ever heard of CDH before you or someone you know was directly affected by it? By getting the word out and bringing more attention to CDH we could encourage more people to fund and push for the research that is desperately needed to better understand and treat this defect.

Our goal for July 15th is to flood mailboxes with blue envelopes. We are hoping to make a big impact by particularly targeting Ellen Degeneres and Oprah Winfrey. The Oprah Show does not accept mail, so we will be inundating her inbox instead.

Here is the link to contact the producers of the Oprah Show:

https://www.oprah.com/ord/plugform.jsp?plugId=216

And Ellen's address is:

The Ellen DeGeneres Show

Attn: Fan Mail
PO Box 7788
Burbank, CA 91523 USA

You can include a letter in your envelope if you would like to go that extra step. It has actually been made very simple for you. There is a form letter located at http://lettersforcdh.blogspot.com/. Just copy it, fill in names where necessary, and print off as many copies as you can afford to send! You can also find information about where to buy your blue envelopes, some ideas for where to send envelopes, tons of CDH info... its all there and easy to find!!

So, please, please, please do what you can to help us with this cause!! The more people to get involved the bigger impact we will have and maybe someday we won't have to hear about another family being given the devestating news that their baby will have to fight for their life from the second they are born or worse yet, that they have lost their CDH battle as far too many babies have.

busy week

It has been a busy week around here and it seems like our blogging has been taking a back burner. Here is a quick recap of the past few days:

* Charlie went for a follow up with Dr Ratner (surgeon) on Wednesday. The biggest news there was his weight gain - - He gained 1 pound, 6 oz in just a week! Dr Ratner is very pleased with his growth and thinks things look great. There was a little suture starting to stick out of the end of his incision, but they managed to get most of it out. I asked him about Charlie's chest (It indents in the center of his sternum). This is a defect called pectus excavatum and it was caused by his repair surgery. Dr Ratner is not concerned and figures we will wait a few years and see what happens with it as he grows.

*After his appointment with Dr Ratner, we stopped up at the NICU for a visit and everyone was so happy to see him! They think he looks great and has gotten so big! Dee, Tana, and Sherrie - three of our favorite nurses - were there. We promised to come back again in hopes of seeing some other people that we have missed!

*It seems that stopping the reglan has not had any big effects on him. He has not started spitting any more than he had, so that is good. He has not had any spitting problems (KNOCK ON WOOD) in a while! The zantac is doing its job too, it seems. He still has a couple reflux issues a day, but they are manageable. We forgot his zantac dose earlier today and he has been noticeably more uncomfortable unfortunately.

*We left him yesterday for the first time since he has been home. We are so lucky to have so many people from the NICU who love him so much though because Dee was able to watch him for us while we went to our friends' baby shower. He definitely loved spending the day with Dee too!

*He has started using his bouncer seat successfully and he loves it! We still have to wrap a blanket around him to help hold him up, but his feet reach the floor and he loves bouncing around and playing with all the toys around him.

*EVERYTHING is going in his mouth lately!! He is always chewing on his hands and he gets his toys up to his face and gnaws on them. If he can't get it in his mouth, he will just hold it against his mouth and lick. I am wondering if he is going to have teeth popping through anytime soon.

*We are still feeding him about every 3 hours - some times more, some times less. He takes about 5 oz of breast milk at every feeding lately. We are probably going to have to start supplementing with formula some time in the next couple of weeks because my supply of frozen breast milk is quickly dwindling away and I am not producing enough to keep up with him unfortunately. We are going to talk to the pediatrician next month about starting some real food too.

So, Charlie is growing and changing everyday it seems! He is getting so big! It makes me a little sad to see him growing so quickly, but I am so happy that he is showing us how healthy he really is. It is exciting to see him developing so well and being such a "normal" baby. We were talking earlier about how we spent so many weeks just looking at him before because there was nothing more we could do when he was so sick and we need to make sure we remember to do that still. We do enjoy and appreciate every little thing, but it is always good to just take a step back and look at him too.

I LOVE BOUNCING!!!

Hey there Chester! Come a little closer so I can get ahold of you!

Mom - why do you always take so many pictures of me???

If only I could fit this in my mouth! I bet it would be great to chew on!

My New Blog...

This is in the very early stages, but I am trying to start a new business/project creating stationary. Visit my new blog at http://gumdropinspirations.blogspot.com/ to see what I have in place already and maybe there is something I can do for you!

update from Charlie-land

Charlie is doing well still. The public health nurse came today to check on him and had nothing too notable to report. He gained almost 3 oz - putting him at 1/4 oz short of 12 pounds. Not much, but it evens out with his monster gain last week! His lungs sound clear which is fantastic! He has been kind of congested, which always makes me worry - but it is all in his nose and no one seems alarmed by it. If anyone has any good advice on how to remove boogers from baby noses, I would gladly take it! I use saline drops and the bulb syringe, but all I manage to do is immensely upset him and make his congestion sound even worse! There has to be a better way!

His reflux is still an issue. We are stopping one of his meds (reglan) today to see if he still needs it and if being on it has really made a difference. I would rather not play around with his meds, but the pediatrician prefers this. He is not spitting a lot, he is just truly uncomfortable for periods of time throughout the day. This sometimes interferes with his feedings as it hurts him to eat when he is refluxing. And it makes him choke, which is never fun while simultaneously trying to eat. It can be quite frustrating for us and obviously for him. He is hungry, but just can't eat.

Carter's mom Kellie had a great post on her blog explaining reflux a couple of weeks ago. I asked her if I could "borrow" it because she did such a good job with it. Reflux is something that many people deal with, but due to the defect CDH babies have a somewhat different struggle with it. Hopefully this information will help you understand more about the whys and hows of our reflux situation!

MAY 19, 2009

Reflux + CDH

With so much talk about Reflux (GERD), I thought I'd take a post to try to explain (in my non-medical way) why reflux is a complication for many CDH kiddos. You recall that Carter was missing his Left Diaphragm (on the right side in this image)--the diaphragmatic hernia he was born with. The diaphragm on both sides helps control the Lower Esophageal Sphincter (LES). This LES is what opens/closes allowing food that is swallowed to travel down the esophagus into the stomach. In a person with normal anatomy, the LES tightens to keep food in the stomach moving on to the intestines [the first image]. In Carter, because of the absence of the left diaphragm, the LES does not have the muscle control and therefore, can not tighten/close. This allows food to easily travel back up the esophagus = vomiting [the second image].

[image courtesy ofhttp://www.empowereddoctor.com/library/photo/gerd.jpg]

It must be all the birthday cake...

That is my explanation for Charlie's amazing weight gain this week! At his pediatrician appointment this morning he clocked in at 11 pounds 13 ounces! That is up 13 ounces from last week when the nurse came here to weigh him! Needless to say, we thought we were going to having a conversation about what we needed to do differently to bring his weight up, but we are just going to keep following what we have been doing for now! Also, his bili number is down over 2 points to 5.5 now. His liver enzymes are still somewhat elevated, but nothing too extraordinary. He also had his second rotavirus vaccine - which is by mouth and he loves just sucking it down! So, Charlie is doing great! 

Today is his 4 month birthday and he is getting so strong! He loves to stand on your lap and he really supports himself with his legs. We tried to use his Baby Einstein bouncer from Aunt Joan and Uncle Joe, but he doesn't quite fill it out enough to keep himself upright. We might try rigging something up to help support him because he does love using his legs! He is also really into grabbing onto things and putting everything in his mouth. He loves the new teddy bear blankie that Aunt Dee gave him this weekend and his crinkly book that I think came from the DeHay family. The Olmsteads had a check up with Dr Ratner yesterday and stopped for a visit afterwards. Baby K and Charlie spent a little time cuddling up together on the couch and seemed quite content!

I can see everything so well from up here! This is great!

Mmmm... this blankie is delicious! Good thing mommy washed it first!

All this playing has really tired me out!

Charlie: Why are our parents so weird?

Kayla: Smile?? Their expectations for us are far too high!!

Every party has a pooper...

And Charlie was it!! :-) Vince threw Charlie and I a great party over the weekend to celebrate my birthday and Charlie's homecoming. It was over at Shove Park in our neighborhood and we had a great time. It was a little chilly for the end of May and quite breezy, but it was great for everyone to finally be able to meet Charlie and get together for a good time. Even Nurses Dee and Cynthia made it over for a little while!

I kept Charlie close to me the whole time and was initially a little nervous about the prospect of new germs, but we were out in the fresh air and everyone was great about not hanging all over him. Charlie was very well behaved and actually slept most of the time... until the end when he pooped more than I have ever seen and it ended up one side and down the other! Luckily Cynthia was able to help me strip, clean, and change him out of the back of my SUV. It was a really great day all around and Vince did a fantastic job pulling it all together! 

Charlie meeting his great-grandmother (GG) for the first time

All the Scannell aunts, uncles, cousin, and Nana

Our little family

Cousin Emanual, wishing someone would play with him!

four generations

The Charlies - Poppop and Great Grandson