First, I would like to say that there have been too many dismal outcomes in the past few weeks and I'm just devastated.  (not nearly as much as the families are though) And I just wanted to say I'm truly sorry for each and every person's loss.  This is something a parent should never have to experience and yet it is happening far too often.  I know there are no words that I could ever come up with to help you through this but please know I pray for each and every single one of you out there.  Even those whose babies survived and are struggling through feeds, sleeping, and reflux.

So sorry to hear of the most recent, Ireland Rose.  She has lost her battle today against the CDH monster and her family is going to need a lot of prayers for comfort and to find peace.

Second, I want to thank everyone who has checked out CDH Family.  I hope it will help someone someday! And a big thanks to PATTY and VINCE who let me post CHARLIE (aka Gumdrop) on CDH Family.  I hope to get many more up there.  So please if you would like, send me a photo- you can find my email under the About part on this blog.  My brother says I need about 50 more posts before he can do his computer thing and get it to show up on Google.. so I'm trying. :) I have 9!! haha I am finding it hard to think of things to post as I blab on and on and end up putting more information in one post than I intended to. haha

Third, Last, whatever, is an update on my little girl.  In 5 days she will be 6 months old. HOLY CRAP!! She is very cute, loud, fussy, demanding, and very unpredictable. We just love her to pieces!  She has now developed a great laugh- I'm sure all parents with a 5+ month old knows of this giggle but I am totally in love with her laugh. :) She loves bath time now! yay!! Once we get her clean, we let her sit up and splash around- the floor is completely drenched when we are done, but it is always totally worth it. :) We must buckle her in everything- she has quite a temper and tries to escape often!

before

during

Her bottle time is ok... not the greatest it's been but just ok. :) She is getting the amount I would like her too, but am still doing the 11 p.m. feed.  We went without it for a couple days, and she didn't take more in the a.m., in fact this a.m., she took less.. go figure!  She takes about 4-5 oz every feed now- and we have found a new trick- when she starts fussing because she doesn't want the bottle any more, we put her octo-plush or her singing puppy dog in front of her to reach out and touch and she eats at least an 1oz or 2 more. :)  Her rice cereal and 1st foods- not so great- I have sorta cut back on that, and do it once and a while, just yesterday she ate half the jar for me. GOOD GIRL! :) haha She sleeps through the night, with exceptions in between 8 - 10 p.m. she'll start crying and just want her bink. We are still working on sitting up- she can't do it long, but she does sit up on her own and no way would I ever leave her side... she is far from being that good.  She still hates tummy time- so I don't think she'll crawl anytime soon... she lets me lay her down for about 2-3 min with a toy, and then she starts to get mad and SCREAMS.. boy oh boy does she have the loudest scream.

So to end, this is a video of Grandpa (Jer's dad) playing with Kayla- who was wayyyyyyyyy tired! So it was super cute she was so giggly.  I start work on Tuesday- Grandma (Jer's mom) takes over then.  She has a very sucky work week now bc Kayla can't go to day care.. so we want to thank Grandma for being so awesome!! We hope it won't last too long.. :(

Make photo slide shows at www.OneTrueMedia.com

Ok so most parents may not see this as a dilemma, but a blessing... ha not me! Kayla sleeps too late in the a.m. We put her to bed just after her 7:30 p.m. feeding. We then "wake" her up at 10:30-11 p.m. to feed her one more time. And I say "wake" bc she doesn't really wake up- she just goes through the motions. Around 7 a.m. she wakes up... quietly- so I don't wake just as she does. She is a great sleeper and a great morning baby. However, if she wakes up that late, it is very difficult to get the amount of ounces in a day that she needs into her. Which is also the reason we do the 10:30-11 p.m. feed... bc I'm still trying to get her 25 oz in. So I was thinking we'd cut out the late night feed in hopes she'd eat more during the day- but how do I do that? What if she doesn't eat more during the day and she doesn't get the 25 in..

For example, she has 20 oz in her right now- she will need to take 5 oz at 10:30... which I doubt she'll do, she usually takes 4 oz and quits. 24 I can deal with, but 20... eh. But if I don't do this late feed, she'll wake up at like 4 a.m.... (maybe!) does that count towards the day before, or is that the start of her day then?! haha I'm so confused on what to do!

How do you get the oz in your baby?

Also- when you hold your little cutie- do you ever feel crackling on his/her side? I feel it often on K and I am VERY nervous about that!!!!!! I mean is it gas- she has been farting, and stinky too, or is it her stomach that is gurgling- they sound way different though. I don't know- does it mean her patch isn't in place... I have no clue as she is my first baby and have no clue if babies just do that?! ahhhhh!!

feeding her should not be this hard!

I have read other blogs and am getting very nervous and scared for the winter... I've read it's gonna be a bad flu winter- and I work in a school! I got a newsletter yesterday and it asked that parents keep their child home when they see the slightest symptom...when does that happen? I'm gonna catch everything- :( I mentioned earlier that I was gonna go back on Prenatal Vitamins- and Nayeli's mom mentioned vitamin C drink- but I'm sooo very nervous! I love working in a school- I love being a teacher- (not that I am right at this moment in my life, but I did teach 5th grade in VA for two years and unfortunately moved back to NY where I cannot get a job to save my life!) - but with K at home, and the fact that she CAN'T get sick- I wish I had a desk job! If K were a little older I may not be so nervous- but she'll just be 6 months old when I start back up.

I even have dreams that I am sick- i'm going absolutely insane! And I know I can't sit back and WORRY about getting sick, but just wait for it to actually happen then figure out what to do from there... but I'm not so good at that. Sept. 1 is coming far too fast!

On the other hand if you know of any jobs out there- HVAC design, Truss Design, or teaching- please let me know, I can not be a TA for much longer! Or if you know of a job that I can do with an El. Ed. Degree with a concentration in English, and a Master's in Literacy.. that isn't teaching- please let me know! I will apply instantly!!

Sorry Laurie- :( I need a job tho!

Summer has come and gone- :( I can't believe that summer is OVER!! I have to go back to work soon- and no offense to the ladies I work with (cause you know I love ya) but I hate my job! I miss being the teacher of the classroom- the TA is just not the same thing. If I didn't have such good insurance- I would quit- but we need it for little miss Kayla.

Speaking of Kayla- she is great... moody, frustrating, happy, talkative and learning new things everyday! Soon she will be 6months.. yikes! I am scared of the upcoming cold/flu season tho- especially working in a school!! I'm thinking about going back on pre-natal vitamins just for a good health boost!

Anyway- here she is- learning! :) She appears to be sitting quite nicely- but it's only for a few short seconds and then she tips! haha - she is getting the hang of it tho!!

Her first time in the pool- yes she is wearing a sweater- I didn't have a bathing suit or a t-shirt to cover her scar so this is what I had in the diaper bag- a sweater- it's been a real crappy summer.. haha we had one week of nice weather so we jumped in the pool! :) She loved it!!

I finally got to go out- Danielle, Jenn and Mary- we took D out after a pretty sucky summer for her and it was a good time had by all! The two ladies on the outside are two of the teacher's I TA for- they aren't offended that I hate my job! haha

Please visit CDH Family! And share your thoughts and experiences on THE NUMBERS! Also please send me pics of your little one- I have a before and after of K- you can send me your baby when he/she was born, or a before and after as well. :)

Pretty girl in red.. :)

lovin her Papa's shirt!

YAY- I finally get to meet Aunt Courtney

I was practicing to sit up, got lazy tho!

sitting up with a pillow in my lap..

K put the pig there! I swear!!!

Aunt Meg, Uncle Tim and K

trying to sit up!

It's been very quiet around here- we are finally getting some nice sunny, hot days. K is doing great now.. I've been hesitant to write this blog for a while- K is back on track with feeding. She now eats 5oz a bottle- and gets her 25oz needed. Sometimes she'll surprise me and go up to 28oz. She is also eating a full serving of rice cereal every morning- and a full container of a fruit or veggie at night. So she is getting extra calories there. She is slowly gaining weight now, she is up to 14lbs 10oz... no piggy like Charlie tho! :) Way to go Charlie!! haha

Other than that- she is doing great. We are practicing to sit up- and trying to find our feet.

Please pray for Rafa and Max.. two babies fighting their way through this CDH monster right now!!

Please everyone understand CDH Family is not an organization. This website is just to help others, support others and provide information. CDH Family is like my second blog- a blog where I am trying to include all CDH'ers out there in the world.

If you see on CDH Family that I don't have a blog listed- please let me know as I'm trying to get EVERYONE!

Again- this site is based solely on how I felt when I searched for information on CDH when I first found out- I didn't find much and what I did found, sometimes wasn't true or it was misleading.

You can always just leave a comment here- if you don't want me to post your blog please let me know. As I do not want to offend anyone else by not asking their permission...

If you would like your website left OUT of the website CDH Family- please email me at olmstead161@gmail.com.

Also if you could please put www.cdhfamily.com on your blog rolls...a lot of your followers don't necessarily follow Kayla's.

PLEASE SEND ME PICS OF YOUR LITTLE ONE THAT YOU WOULD WANT ON THIS WEBSITE- you can do before and after like I did- or just a pic of your little one that you like angels and all.

I know there are a lot of websites out there that a lot of you have made to help people become more aware of what CDH is. Well I guess it is my turn as I am attempting to put together a new website.

www.cdhfamily.com

This is def. a site in progress- I'm still putting together the information and figuring out how I want to present it. What you may see now may not be there later... :) However I wanted to share it with you as you may have some good ideas about what should def be on the website. I am making this website for all new CDH mothers- a site I would have liked- knowing of all of your blogs while pregnant, may have helped me a little. I am by no means the search engine whiz- so that is probably why I did not find your blogs until I met Vince and Patty (after we had Kayla...thanks guys!! :))

Eventually I would like this site to be a great source for all CDH families to come together and talk- we have our own separate blogs that we, here and there, comment on.. but I thought it would be nice to have a place for us all to go- and talk about our issues as they arise... instead of posting and hoping someone out there can help. Don't get me wrong- the blogs are fabulous... I just thought it would also help us to get to know each other a little better as we do share something very HUGE in common and yet most of us will never meet.

Anyway this is just a thought and as I think it's put on site- but I often change my mind and change very often. :) So if you have any input- please let me know. I'm trying to put ALL blogs on the website as well- it seems as tho everyone has someone different on their blogs so I will stealing the sites off your website- if you mind, please email me- olmstead161@gmail.com - and even email me if you have suggestions.

Ok K is awake now- short nap! jeez-a-loo!! :)

My husband is an obsessed Yankee fan (if you couldn't tell by all of Kayla's Yankee gear) and watches the Yankees EVERY night!! I am not a fan of baseball season as there is a game on EVERY night except maybe once the whole week! So as my husband watches the Yankee game and Kayla is down for the night I don't have much to do. So I come out to the computer room and blog stalk! I read blogs of CDH babies and their families that I follow every day and then I click on one of their links to a new CDH blog and begin reading their journey- Now this wouldn't be bad but all I do is cry! It's very frustrating to me that this happens so much yet they call it very rare! So I guess I'm posting tonight because I feel awful! Kayla had, compared to other CDH babies, a fairly easy journey. I mean she was intubated for 26 days- two different vents, one chest tube, two surgeries and one day on vapo therm. Kayla's biggest feat was overcoming her fentanyl addiction. (of course after repair) But as I sat here and read some new blogs (to me anyway) and found out that a couple moms showed up to deliver and had no clue what was wrong with their baby. I couldn't imagine going into this and NOT knowing her situation. If this had to happen, I'm glad I found out 18wks gestation! Also, as I was reading, I saw many complications! ECMO for over 30 days, pnemonia (sp?), infections, on and off intubation, feeding tubes, going home with oxygen, going home w/o your baby!!!! The one thing that I can guarantee in life, that everyone will agree, is that a parent should never know the feeling of the death of a child. It's not fair and it's not right! So I guess I would just like to thank my lucky stars that Kayla had a decent ride through the NICU. She had two scares of an infection- which both turned out to be nothing, thank god! She was never re-intubated, slowly ate from the nipple every time, and didn't need ECMO- I truly did not know how lucky I was/am. The CDH monster is a tough monster and it strikes every baby differently. I have read MANY CDH blogs and have not heard the same journey once. I am very lucky to have Kayla home and well. She currently is struggling with reflux which makes her not eat so much, but I'm working on it- formula changes and what not- but as I sit here and think of how frustrated I get when I feed her and she doesn't take what I THINK she should take- I realize I need to stop worrying- let everything fall into place and live. I need to stop worrying about her reherniating, eating and breathing- it just seems all i do is worry. But after tonight- reading those blogs- I need to cherish what I have and whatever happens, happens. As far as I can tell- thanks to all the blogs that people post- is deal with it when (if) it happens and you will get through it, baby and all. I do apologize for going ON and ON... but I'm just so angry with what CDH does to a baby. Even my time at the NICU- my husband and I saw babies struggling for various reasons that I never thought about before. The 9th floor of Course Hospital in Syracuse is a whole different world. It's a sad world, but a loving, caring and life-saving world!!! It takes a special person to do what those drs, nurses and surgeons do! I thank them all and all you CDH bloggers and Kayla Blogger followers as you help me get through day to day.

Kayla was so hungry I couldn't even hold the bottle! haha - she doesn't do this for a long time, just about enough time to catch a pic! :)

First time we gave K a bath w/o the net. Grandma did it once while she was taking care of her and said K loved it, so we tried.. and she did! She was too hungry to smile tho!

first time she let me put a hat on her head... and didn't cry! :) Must be bc it's the Yanks!

playing in her Bumbo which she now likes.. didn't b4 :)

Eating a banana! Yum yum...

Kayla is meeting her Olmstead family for the first time. Great Grandma Helen got to hold her. That is my husband in the white and his father Jerry Sr. in the blue.