CDH Family

Ok- so I know this is a different blog, but I thought for what I am thankful for today, should be posted on my CDH blog….

19.  I am thankful for my CDH family.  There are very few people out there who TRULY understand what it’s like to have a baby with a rare birth defect and without my CDH family, I would have been/be lost!!  Without their blogs, their worries and their advice…. I don’t know how I would have survived this defect… and I’m not even the one who was born with it.  I’m very thankful to know these families for myself and for Kayla- she now will have other children with similar issues to confide in!  This is not to say that family and friends were not there for me and Jerry when this all went down, and some (Angela) are easy to talk to and not worry that I’m annoying them.  I know Kayla looks fine from the outside, but who knows what troubles she is having on the inside.. I mean she (we think, pretty sure) was reherniated for about a year… not good!! And there are a select few from my CDH family who have always been there for me- even tho we are hours and hours from each other.. and I am thankful for your help!  :)

off to surgery for the third time – harder than the first two!

Just got out of surgery..

chest tube, catheter, epidural….

One of the CDH families I was talking about- a visit from Charlie- who also has CDH.

Two months ago Kayla had surgery to repair her diaphragm again.  She had several iffy x-rays in a row, over the last year it appeared that her patch was floating up and up and smushing more and more of her left lung.  Finally, our Dr. decided that he needed to get in and fix her patch.  After 4.5 hours of surgery, our Dr. was finally done with her.  He came up and told us that she, in fact, did reherniate.  A portion of her large intestine was up in her chest cavity and the patch appeared on x-rays the way it did because it was only detached in the front, creating the bubble effect.  I did blog about her surgery and recovery on Kayla’s personal blog, www.kolmstead.blogspot.com if you want to know more about it.  :)

I was completely terrified of her surgery!  Knowing she knew something was about to happen, was soooo hard!  Watching her go with her father down to be put out- was AWFUL!  Watching her have to get all the tape off her chest tube spot twice was just so sad.  She was not happy with anyone touching her tummy and threw a complete hysterical fit every time they did. It was sooo hard!  I can not imagine having to watch her go through this again.  I feel for those who have had to watch their child reherniate more than once!!  Why does the reherniation occur?

I would love for you to share your experience with your child’s reherniation.  I never really thought Kayla could reherniate.. well I guess I thought she could, but never thought she would.  I figured she was fine… I felt like reherniation was rare… but it happened… to a ton of our babies!  So it can’t be that rare.. And we never had any symptoms- she didn’t really have a difficult time breathing until she had a cold, and she still pooped (little balls but regardless, still poop), played like normal… you would never know she had reherniated.  So I feel it’s important to share our stories of how we found out, what the child experience before and after surgery…just to let other parents know more about this little thing called “reherniation”.

So please share your story, again this is not an organization/corporation, it’s just a website to share your story for others to be aware and to help other parents with issues they may have with their CDH baby, or to help parents who just found out they are going to have a CDH baby.  So please share.

A month late- but here it is!

March 31st to some people is CDH Awareness day. To me, it’s a great way to spread awareness to people about this awful defect and to wear one specific color for it. I am all for spreading awareness everyday but the thought of one specific day and one specific color to spread CDH Awareness is helpful to me.

If someone asks or I have the opportunity to share with someone what CDH is then I do- but on March 31st I wear turquoise and ask others to spread awareness about CDH. Most of my co-workers wore turquoise and I sent an email asking them to tell at least one person what CDH was. A lot of them sent out my blog, and others wrote an email and sent it to a huge amount of people- to you who helped- thanks!

I also have to say I LOVE that turquoise has been set for the color- it’s a stand out color- no one really owns any turquoise- so you have to go buy something special and then someone will notice and comment on your color choice- it stands out! I love that!

I just recently purchased a turquoise bracelet- and apparently, according to Kohls- turquoise stands for strength! I couldn’t resist! My child and yours- has def proved that they are strong- and parents you did as well!! I also bought a pair of earrings- angel wings that are turquoise- I was soo pumped when I found those!!

Don’t get me wrong, I do try to share my story with everyone- hence the blog, newspaper article my co-workers did for me, and I wear my CDH Awareness turquoise bracelet everyday. But March 31st I really get to go all out and I like that. But I do my best to support all CDH parents and organizations!

I will never forget the day when one of K’s doctors told us that if K “caught a cold, it could be fatal.” Of course K was only one month old and still very sick (on the mend). However, when a doctor says that, to me anyway, it will stick with me! I’m very uneasy about the germs and illnesses that K can catch… but then there is this part of me that knows germs are necessary for her to build immunities.

So just recently K turned the “magical” 1 year old! Apparently at this point, their lungs have had time to grow and become stronger… so K obviously was just waiting for this “magical” birthday- and the very next day, she had a cold! STINKER! ha…

I was a nervous wreck! K’s cold was awful! She had the most awful sounding cough, that sometimes turned into a coughing attack, and her nose was soooo stuffed! And of course, she doesn’t let me use the aspirator on her- so she had to stay stuffed! It was awful! You could tell she felt awful- she was very cranky! However, K always slept through the night and had one or two bad days of eating. We had her checked twice- one was an appt she already had for her RSV shot, and the second was bc of her eating. Both times K’s lungs sound great.

K kicked this colds BUTT!! She had it for about a week and a half- maybe less- and never wheezed, never seemed out of breath- but of course I watched like a hawk to make sure she was ok.

I dreaded this day for a LONG time- and I knew it was going to happen, just never wanted it to. However, like Patty told me, watching K go through this cold and seeing how well she did with it… has made me realize just how strong she truly is! I am glad we were so protective for her first year- allowing time for her lungs to grow and become very strong- but now that she has had that first cold, I’m less protective. I know I had to be at some point, but I didn’t know what would be the breaking point for me… I’m a very nervous mother who does not want this kid to go back to the hospital as I’m sure you all are!

But I’m better now- less worried.. I don’t worry about her weight, or eating.. She eats just fine now- I think the only thing I worry about now is her not talking and when she gets constipated- I worry that she has reherniated… Silly I know- but it can happen and I just need reassurance that all is well and it’s been a while since her last x-ray.

I guess the point of this post is to not worry so much about the illnesses our kids will get. They are obviously stronger than we let on. Could I have given this advice before K was sick- no not at all- and I wouldn’t listen to anyone who told me that she would be ok… I guess you have to experience it for yourself. But eventually we all have to be part of the real world- and you don’t want that first time to be pre-k!

How was your first experience with your child’s sickness? Or if it hasn’t happen yet, what are your main concerns? I know I haven’t updated in a while, it’s hard to think of a topic… But please keep leaving your comments, I LOVE them!

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!!!