RSV- Respiratory Syncytial Virus

Another RSV article

One more RSV article

I believe all of our little CDH babies are recommended to get the RSV shot or also called synagis.  However, not all babies can get the approval for the synagis.  It was very easy for us to get the approval as I have fantastic insurance … you may be thinking- insurance?! What does insurance have to do with the approval of receiving synagis to protect our babies?! Yea I was floored about this too!

Apparently, the insurance company is the main factor is achieving approval for RSV protection.  It’s an expensive shot, but it protects our babies from getting RSV.  So your doctor may say yes, your baby needs this, but it’s up to your insurance company if you get it or not!  RSV could be fatal to our babies and insurance companies may not understand that.  I do know some of you had quite a battle to get the insurance company to approve.

I believe it is 6 shots that truly protects our babies from RSV.  They get one shot a month (unless they weigh more than 17lbs- then they get two shots a month).  It should start about October and end in April… the end of the nasty flu season! Now, just recently I have found out that the synagis aren’t total protection! Which I thought they were… but NO! Apparently these synagis help to prevent our babies from getting RSV but there is a chance they can still get it.  And if the baby does get RSV, at least getting the synagis will help prevent from getting too terribly bad.  But it’s still not good for our babies to get RSV.

Before Kayla, I had never heard of RSV.  My sister’s baby, Alaina had it, but I never really knew it was RSV- until I had to learn what it was.

Premature babies need this protection as well!

How many of you struggled to get the RSV protection for your baby?  How many of you still do not have that approval? How has the flu/rsv season been to you so far?!

Praying for a healthy winter for all!!!

This may only be me, but I always lysol and then wash Kayla’s toys (her new ones!) before letting her play with them.  I just think of all the toys I touch to get a feel for at the store and think of how many others have done that before me! YUCKY!! So when her toys get into my apt. they are cleaned!

Quick story- I go grocery shopping first thing in the a.m. so it’s not so crowded and less people who could be sick.  I always take the cleaning wipe and wipe down my WHOLE cart before touching it.  One day I went early in the a.m. it was peaceful!  I did my shopping within an hour and not once was there a person in the same aisle as me!  So I thought I got away with some pretty decent shopping and did a great job being away from sick ppl… WRONG! As soon as I unloaded my grocery’s onto the check out station- I hear the cashier telling her boss that she needed to go home as she was not feeling her best!!!!!!!!!!!! ARG Needless to say, I came home, told Jerry not to help me as I didn’t want him to touch these nastified things … and yes, i’m a nut.. and I lysoled EVERYTHING! I’m crazy!

Anyway- so I was wondering what you were doing for Christmas?!  Are you taking the toy out of the box and washing then wrapping so your baby/kid can play with it right away? Or are you keeping it in the box, letting your baby/kid open the gift and then washing it?  Or are you not a crazy freak like me and don’t see the need to wash it first? haha (I am crazy, it’s ok to say! )

I am just trying so hard to keep my kid healthy.. I don’t know how her lungs are, so I will do anything to keep her from getting sick.  Heck, I even clean myself twice a day! lol!!

Anyway- I just wanted to know how everyone was doing their thing for Christmas.   And what would really get my spirits up is if you shared your favorite Christmas recipe!  I love to bake/cook fun things.  My personal favorite for the Christmas time are Creme De’Menthe Squares (YUM)!!! Click if you want the recipe –  I also LOVE Nuts and Bolts!! (my mom’s!) This seems close to my mom’s recipe- but I’m not sure… but sounds good!

Also- how is everyone doing with flu season?  We ok?  It was rough for us for a while, it seemed like half of the kids in elementary were out sick with either H1N1 or just the regular flu and then some turned into bronchitis, and even pneumonia.  It was rough.. and we still aren’t clear yet.

Happy Holidays!!

Charles Woodson’s Generous Gift to Pediatrics

My husband sent me this article the other day and mentioned it might be good for one of my blogs.  I figured it was most fitting on CDH Family- as it isn’t directed towards CDH- but it’s directed towards helping children and babies.  This is a very generous gift that Charles Woodson has made.  Yes it would be great if it were directed towards CDH but we will just have to wait our turn I guess…

Also- Oprah- I’m guessing she isn’t going to be taking us on her show… considering she is cancelling hers.  My thought is she already has all her shows planned out and has no more room to do a show on CDH.  Pray Ellen is paying attention to us.  I also emailed Dr. Phil and I have been told to try the View… I haven’t yet, but I’m thinking about it.  I really thought Dr. Phil was going to be something with the automated response I got- simply because it wasn’t automatic.  It was a couple days later… But maybe their mailbox was just delayed.  Oh well… All I can do is try.

I always tell my co-workers who ask about Ellen responding – that it will be known one day- when a famous person has a CDH person.  There are a lot of organizations out there that are working really hard to let CDH be known- and They do a lot of hard for that- so kudos to them!!

Anyway- this was just a good thing that Charles Woodson has done for babies and children and I thought in light of the holidays- it’s always nice to know that more money is being put in to research why these diseases/defects are killing our babies/kids!

Maybe we could try to get to one of the NFL players, MLB players- you get my drift- to donate money like Charles did to just CDH..?  There must be a way to talk to one..? hmmm Anyone know someone who knows someone who knows someone famous? lol

Happy December !!

ps- thanks to all who comment on here.. you must know I absolutely love it!

Some of you may think I’m totally crazy- but I have worried about K not getting enough to eat from day 1. The day before we were discharged, I was told that if K didn’t gain weight she would be classified as “failure to thrive” and that scared the crap out of me! So ever since then, I have worried about K losing weight…

Until now, she has not lost any weight! And I finally stopped freaking out- I thought she was in a good eating pattern and I still do! She is eating about 20 oz a day of formula and then she get about 130-160 calories from regular food a day! All of that (calorie wise) is about the same if not more than what she used to take in a day.

And yet today- K went to get her second RSV shot- which they weigh them for… and she lost 1.4 oz since her last appt two weeks ago! The ped. said she wasn’t too concerned… but really- two weeks ago- K should have been a couple of oz UP !! Not DOWN!! So yes, I am very frustrated..

Our kids have enough problems… feeding issues is one of them, and a really frustrating one! And I really thought we were in a good place right now as I’ve mentioned.. so I’m just frustrated on how she lost weight- I know weight gain slows down- and I’m ok with that… it’s just two weeks – some gain should have taken place. K has another appt on the 18th (her 9 month wellness visit) and they said they’d check again. I took a half day to go to that appt!

And I know this sounds like a post for my own personal blog- but I have not posted here in two weeks- and in order for this to pop up in google for people to find when they are in search of answers, I need to get the traffic flowing.. so I had to post here. Besides- weight gain/loss goes with our feeding struggles.

I just can’t believe all those times I was actually worried she didn’t gain weight- and she had- and now when I didn’t worry at all- she lost! ARG! I will not freak yet- I really, honestly feel like she is on a good track.. and if need be I guess I will add that dumb 11 o’clock feeding back into her schedule.. however I don’t think she’ll like that too much.

And this girl doesn’t eat much- I know this compared to healthy babies- but she will not eat when she doesn’t want to be fed. If I think she should be starving, and she isn’t in the mood to eat- she won’t! She isn’t anything like her mom… who eats even when she isn’t hungry! lol

Any ideas? Should I stop stressing? Or is this a good time to stress? What do you think?!

help!

In the video – K is getting her third dose of zantac for the day. She now WANTS the zantac as you can see.. she loves it! However, that was not the case at the hospital, and it most certainly wasn’t when we first started her on it at home. She threw a fit- now when she is throwing a fit, her zantac calms her down.. hmmm

Reflux. Fun right? Watching your baby gag while drinking, and arch their back as they start to feel the pain… burst out in tears spitting out the bottle asking “Mom please stop- I hurt” through terrifying cries… Reflux. AHHHHHHHHHHHHHHH

So if you haven’t guessed yet, K gets reflux… pretty bad. She used to be a lot worse actually- so yes, she has gotten better. She came home with ZERO meds. WOW right?! Most CDH babies wouldn’t dream of leaving the hospital without any meds, but K did. I think it was a month or maybe two months later, not sure- she started having real issues with reflux. She would throw up- not often, but once was enough for me. She would arch her back almost every time I fed her. At one point she would cry as soon as she saw the bottle. So I finally got an appt! My ped called my doc in Syracuse (K’s surgeon) and they called right away and asked for my pharmacy- calling in Zantac and Reglan.

Today, K is just on Zantac – a good amount, 1.5mL’s. But if it helps, it so worth it. Which oddly- back to the poop post- is part of her issue with constipation. So it’s either reflux to the point feeding is impossible, or feeding her prune juice and prunes everyday so she can kick that constipation side effect.

So- how do you know if it’s reflux? What do you do? How can we help our little darlings?

“The most common symptoms of gastroesophageal reflux in infants and children are:

-Frequent or recurrent vomiting.
-Frequent or persistent cough.
-Refusing to eat or difficulty eating (choking or gagging with feeding).
-Heartburn, gas, abdominal pain, or colicky behavior (frequent crying and fussiness).
-Regurgitation and re-swallowing.”

Meds did help K. Zantac does the trick- however that isn’t to say K doesn’t suffer sometimes. She goes in and out. When she isn’t doing well with it now, she most often does the gagging thing, regurgitation deal. It’s not often the food will come back up- but if it does, she most often swallows it again. I feel awful- so I let her play while she eats. She needs to keep her hands busy otherwise she’ll pull my hair- ouch!

I know a lot of babies are on prevacid. I’m not familiar so I can’t talk about it- but I would love someone to! I know some babies go home with a lot of meds, I remember reading Ruby’s blog, and they took a pic of all the meds she got throughout the day- there were quite a few.

After eating-

I hold K up for at least 15 min. Often times she is tired, and wants to lay down- but she can’t so, all I can stand for is 15 min of her being absolutely miserable and my back breaking bc all I can do is stand otherwise she’d cry! But I have heard it’s 30 min! So hold that baby up- when they get older, they can sit up- which K does do sometimes.

Advice on Reflux-

-hold baby up as much as you can while feeding- I used pillows to lift my arm.
- hold baby up after feeding too… helps keep it down.
- while sleeping- create a wedge.
- buy the nap nanny (a friend says so)
- use the meds… they work!
-

From: http://children.webmd.com/infants-children?page=2

What Are the Treatments for Acid Reflux in Infants and Children?
There are a variety of lifestyle measures you can try for acid reflux in babies and older children:

For babies:

Elevating the head of the baby’s crib or bassinet.
Holding the baby upright for 30 minutes after a feeding.
Thicken bottle feedings with cereal (do not do this without a doctor’s supervision).
Changing feeding schedules.
Trying solid food (with your doctor’s approval).
For older children:

Elevating the head of the child’s bed.
Keeping the child upright for at least two hours after eating. (yikes)
Serving several small meals throughout the day, rather than three large meals.
Limiting foods and beverages that seem to worsen your child’s reflux.
Encouraging your child to get regular exercise.

What do you? How do you deal? How does your baby deal? What med’s are you on? This is a great post for parents even if you don’t have a CDH baby as a lot of you have reflux babies.