Kayla Mae Olmstead

Kayla was born with Left-sided Congenital Diaphragmatic Hernia (LCDH). When she was born she was in the NICU for a total of 55 days. She reherniated two years later, had her repair surgery in May 2011 and spent 11 days in hospital recovering. She is a tough little girl and we are truly blessed to have her here.

I'm Growing, I'm Growing!

Lilypie Fourth Birthday tickers

Reflux and Hiccups

First- please keep praying for Baby Jackson as he has started his fight for life. He is currently on ECMO. pray pray pray!!
loves her spoon with nothing on it.

My mommy and her broken humerus!! Mom jeez put your sling back on, you're hurting me just thinking about you straightening your arm!! OWWWWW

Now my problems are minor-

I am having hiccup problems.. So I have talked with Patty about this issue but what I don't get is why she still gets hiccups EVERY time she eats. She is on Reglan and Zantac.... I know we are supposed to hold them up for 30 min.. but my 14 pounder only likes to be held up if mommy is walking around or just standing. OW -!! my back can not handle this. If I sit- she instantly starts crying... the second I stand, she stops. SPOILED! :) I think that was a NICU thing- any time she cried at the NICU I picked her up.. bad habit but was I going to let the whole NICU listen to her?! Anyway- I hold her up as long as I can stand it- and she is squirmy- doesn't want to do the same thing for 30 min!! As I'm sure most of your kids don't. And I know the hiccups don't bother them half as much as it bothers me- but I guess I'm always scared that the hiccup will make her reherniate. Crazy idea- but I can't get it out of my head. I don't know what to do. Water does help her- but right after she eats, she does not want water. She does not want anything! I hate the hiccups! Any ideas how I can help her eliminate them?

pray pray pray

please pray for baby jackson as he has just started his fight against the CDH monster!!!

Doll Attack

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Kayla: give me my doll .. please please please.

Kayla: no no no I don't want this!! take it back, take it back, take it back!

Silly girl can't make up her mind- hmmmmm :)

So if anyone out there thinks I'm crazy bc I change my blog so much I'm sorry. My husband picks on me all the time for changing the background too much. I need change- I can't stay the same with anything. He hates it when I say I need a change bc I usually mean the living room or our bedroom.. haha he is such a perfectionist that change isn't really in the books for him.. once it's done to his liking, it's done. :)

So the other day- off the topic of Kayla- my mother whom I go to everyday for help with Kayla in care, broke her humerus (sp?) .. the "upper arm bone". Her slipper caught in the door way and she didnt' stop .. she just landed right on her shoulder on cement. She is in quite a bit of pain.. and she is not allowed to hold Kayla for 6-8 weeks.. my sister is about to have a baby and Mom was supposed to go down and help- but she can't now. :( My mom is very sad. First time she has ever broken anything.. Kayla will be very sad as she loves her Nina.

As for Kayla- she is still not eating so well.. she is on the Reglan and the Zantac 3x daily but will still only take 4oz per feed. She gets 24-26oz in.. which is good, I usually strive for 25.. bc she is on the 24 cal formula- but I'm wondering if she is gaining enough weight now. Makes me worry- and last night.. she went from around 7:30p.m. to 7:30a.m. with out peeing.. I was freaking out. The line on her diaper was still yellow.. her diaper was completely dry. She did have 5-6 wet diapers today.. and she pooped.. but I am worried about this peeing deal.

Olmstead BBQ

I was experimenting with taking color out of pictures.. and I thought well the usual pics you see that are black and white with a touch of one color are the pics where the kid is sooo darn cute and adorable. So I chose the pics of Kayla that truly portrayed her grumpiness on the 18th. Yes she is wearing two outfits with two different bows bc I was not sure how I wanted to dress her for our annual Olmstead BBQ- so I tested them both. :) So now I bet you're wondering why she is so grumpy. No it's not bc I changed her 20 times.. haha it's bc she is teeting!! OMG does that ever SUCK!! The baby orajel does work tho!! Phew!!

The D'Angelo's did make it out to your Olmstead party! Yay! :) So we finally got a pic of all six of us. Just imagine what is going on inside each of their minds... hmm
Vince: OMG is that baby really crying again??
Patty: Thank god Charlie is a good boy!!
Charlie: She's crying Mom.. make her stop!
Kayla: Owwwwwwwwww
Kate: hahaha omg, she's crying again!! yay!
Jerry: Is this almost done cause I want another sandwich!!
Overall our BBQ went pretty well... I always hate having big parties bc I never know how to get around to chat with everyone!! But it is nice to see everyone.. :) Kayla had a very rough day from the very beginning. She apparently has started teething.. and she didn't get orajel until right before the party which started at 3. I wasn't sure if it was teething, a tummy ache or something else. So I talked to the pharmacist and he told me tylenol bc motrine might make her tummy hurt worse, and told me talk to my ped. before using baby orajel.. but said it worked real well with his daugther. So I decided I wasn't waiting till Monday to find out if she could have some baby orajel. Then I found out that my ped is off all of next week.. and Kayla is not eating so well. I have read that teething can cause loss of appetite.. but they say contact the ped. if persists more than one day... my ped is off.. what do I do now?!
Anyway- we were glad the D'Angelos, Basfords, Grays, Websters, Loceys, Olmsteads, Martins, Warrens, Hurleys, Mr. Thompson, Hetus, Youngs, Geddes (Jacob :)) and the Mousaws all came out for a while. :) It was nice to see everyone !! :)

When pigs fly??

So earlier I posted how Kayla may have reherniated. Well we had our doctor's appt yesterday and she was completely fine. Our surgeon, Dr. Ratner listened to her and didn't hear bowels up in her chest.. and he sent over the x-ray to have his radiologist look at it. Apparently I am not an expert in reading x-rays. All I know is the two I saw did not look the same... anyway Kayla is doing just fine, except the whole eating deal. Dr. Ratner told me to keep doing what I was doing as 25 oz on her 24 cal formula is just fine.
She is now 13lbs 13oz...SLOWLY gaining, but gaining. :)

Kayla loves to stand. :) She is as happy as can be at her appt.

Maybe this is a sign. She'll reherniate when pigs fly??? :)

Vince, Patty and Charlie - on their way to Hollywood!

Vince, Patty and Charlie D'Angelo are now famous! :) I'm not sure our volume was up enough at home.. but I tried to get the video down. :) And what a perfect day to do this- July 15!! You can also hear me in the backgroud- I forget that when you use a video camera you can hear the person using it.. haha so sorry for my comments. :)

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Kayla's Little Helpers

Go to http://www.lettersforcdh.blogspot.com/ and participate in the online poll to find out an estimate of how many blue envelopes went out on July 15! :)
We would like to thank all that helped out in mailing blue envelopes today. Below are some of Kayla's little helpers. Thanks everyone!! My rents mailed out 10 and composed a letter, my soon to be sister in law Meg mailed out 40 and I believe made a flyer, my mother in law mailed out mine and hers a total of 200 with my letter and hers, a lot of the people below mailed out 5ish with a letter they composed as well.. I am surrounded by such great people!! :)

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Updated video- I had a few spelling mistakes, and needed to add Uncle Darren with Kayla. Thanks Laurie!

x-ray pic

not sure why they did her right side?? hmmmmmm....

To reherniate or not to reherniate? That is the question...

The other day Kayla had her x-ray as I posted b4. We are worried that she may have reherniated, a week ago Wednesday to be exact. Today I went to the hospital to get the x-ray of Kayla's chest bc I was supposed to hand deliver this to Dr. Ratner...I picked it up and walked out to my car. I decided I wanted to look inside the envelope. And thank god I did... there was a write up- so I read it: Patient is status post hernia repair. There is some bowel loop identified under the left hemidiaphragm and medially just near the cardiophrenic angle. I cannot clearly state a difinite recurrent hernia. There were no prior films available for comparison. There is also on the lateral view a wedge of air identified anteriorly which could be gas within a Morgagni herniaa versus a part of the repair. The lung fields are clear and the heart and mediastinal silhouettes appear normal. Impression: Bowel loops in what appears to be elevation of a left hemidiaphragm with some loops noted just medial to that diaphragm. Gas also noted anteriorly on the lateral view, which could be a portion of the stomach or colon in a mogagni hernia. Correlation with prior films may be helpful. These results were discussed with Dr. T. No acute pathology otherwise noted in the chest. Now I read this and anger brewed inside of me. What this sounds like to me is "I have no clue if she reherniated or not." Yet, almost a week later noone has done a thing about this. I got the letter, and the x-ray cd... and I have already phoned Dr. Ratner's office and talked to one of the nurses, and she was very helpful. She told me to fax the write up to her, and thankfully the x-ray cd loaded on this computer and I was able to send her the pics of the x-ray. What I don't understand is why I had to do this. If a doctor/radiologist isn't sure if she reherniated wouldn't the best option be to send the x-ray directly to the surgeon who does know. I am very p'od about this. Kayla could be getting sicker day by day but bc noone up here knows about CDH she has to suffer. The KICKER- I gave the cd of x-rays that were taken at the NICU before and after surgery to Dr. T and she said she would bring it to the hospital for radiology to compare ... yet they mentioned they had nothing to compare the x-ray to... I am now awaiting a response from Ratner's office. If I do not get one within the 1/2 hour I will be calling again. I just need to know- why wait for her to be in repiratory distress for her to be fixed. I just don't get it.

100 FREE envelopes!

This is probably too late for all.. but I just wanted to let you know I went to our local drug store, Kinney Drugs (a place that sells cards) and I asked if they had any blue envelopes .. the lady said "oh yea, I have thousands!" so I asked for 100 ... and she gave them to me, for free! :) But I hope it helps those who still have yet to get their envelopes... :)

Happy Anniversary- Dr's day.... :(

So today I finally got fed up with Kayla's reflux issues and I called my Pediatrician. I got an appt. today and Kayla has only gained 3oz in 12 days. Not soo good.. so as my doc listened to Kayla she said she heard BOWEL SOUNDS!! So Kayla got yet another one of those AWFUL x-rays and I asked to look as I know what it should look like. Instantly I started crying as it did not look the same as it did when Dr. in Syracuse said everything looked good. So I'm in an awful panik... Doc calls about 2 hrs later saying the radiologist says it does not appear to be a reherniation- however he needed to see a prior x-ray to be certain. My thought- I have seen both- I know what good one looks like.. and this wasn't it. So next week- July 15- we go down to Syracuse to see our surgeon who can tell me for sure. As of now they aren't worried - I am- but they believe it is mainly her reflux- so they put her on Reglan 3x/day and upped her Zantac to 3x/day. Jer and I are freaking out! Her appt isn't for a whole week!!

Looks happy enough- haha- prolly bc she is wearing a Giants bib... :)

On the happier side- Three years ago today- Jerry and I got married. We were married in a catholic church in Canton which was a church I have always dreamed of getting married in. The ceremony was great- but the priest kept calling me Katelyn... so when Jer had to say his vows- he called me Katelyn too- everyone LAUGHED and LAUGHED! :)
oh how i would love my pre-baby body back.. haha Our Sand Castle Cake- it was to remind of VA Beach.. :) This is a dance my brother ALWAYS does- the thumb thing, so Jerry and my cousin Jim joined him... haha they are dumb! My siblings- my bachorlette party was a big picture fest- and quite often we posed in the Charlie's Angels poses.. so we did it for my wedding!! haha My dad is funny- I have no clue who he is calling a loser- prolly one of his kids.. haha but at my wedding and I have it on tape- he was dancing next to Ang, my sister and he punched her.. it was sooooo funny!! so glad it was caught on video- guess i should send it to Funniest Home Videos. :) haha

B-day and Anniversary gift-

My husband got me a new video camera for my birthday/anniversary. My bday is the 5th and our anniversary is the 8th. :) So he made a joint gift and it was PERFECT!! I'm just figuring things out and I got a cute video of Kayla. :) This isn't the first time- she just doesn't do it every time, so it still catches me by surprise when she rolls over.. and it's like she doesn't know what she is doing, so it's not on purpose! haha video

July 4th festivies and my bday..

my siblings and their families! We are growing! my nephews Julian (1) almost and Jacob (3.5) My rents and us on my b-day- i'm now 26.. 25 wasn't so bad, but 26.. YIKES! ... i'm a blimpoooooooo :) Kayla's great-grandparents Mimi and Papa!!
My whole immediate family! :) Kayla's first outing with everyone... she got to stick around for 20 whole min! :) then Jer and I freaked and had her grandparents come get her .. (jer's rents)
On the 4th my whole family got to get together- this doesn't happen very often as my brother, his wife Meghan and their son Julian live in NC, my sister Angela, husband Jamie and daughter Alaina and soon to be Alyssa?... live in PA, and my sister Sandra, husband Steve, son Jacob and daugther Maddy live in Plattsburgh- so it was a treat for us all to be together! We also had the added treat of Aunt Ellen, Uncle Bob, cousin Jim and girlfriend Meg, Aunt Cindy, Uncle Leo, Aunt Judy, and my Mimi and Papa. It was a great 4th of July regardless of the rain. One of my favorite things to do is hang out with friends and family!
Then on the 5th, mom, yes me, turned 26.. so my rents, and grandparents came over for a little bbq. It was nice to have Kayla adored.. as she missed the 4th of July festivities.
Kayla- is having massive reflux I think.. I don't believe her Zantac is working any- and she'll only take at most 3oz.. sometimes for Grandma she takes 4 or 5 oz.. but she has not done that for me.. I told Grandma she wasn't allowed to leave.. but she did!! haha so Kayla is only getting about 20-23 oz a day where she was getting 25-27 a day.. we did start rice cereal.. and she gets a little of that.. she takes it all, the amnt that is put in her mouth that is, but she doesn't take a whole bowl yet.. just about 10-15 spoonfuls of rice cereal. She is good with the spoon tho.. and getting better day by day... but I can't imagine that would be making her eat less formula all day long. next thursday I can start her on 1st foods.. I just want her eating real food and moving so her reflux doesn't bother her as much, it's soo sad!!

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