Friday, January 15, 2010

One year ago...

I can hardly believe it. After Nevaeh was born, I was so unsure of many things. Will she live? Will she see her first birthday? Second, third? Will she be able to do "normal" things? Will she eat?! She's met all of those milestones & so many more in the past year. But this milestone was one of those that I never thought she'd meet. That makes it so much more sweet!

One year ago today, Vaeh was in this room...

That was one of those days you really don't want to live, but when it was over I was sooooo happy!! Here's Miss V just before she went into the cath lab... feeling a little bit loopy!

The result of all those hours of hard work in that room... no more oxygen & no more orange tinted plastic sitting under her nose (ie: cannula)!!

She looked so strange for a few days following the cath without our friend, Mr. Cannula! She had had it for so long that it was like a part of her was missing. Believe me, though, we got used to the new Vaeh REALLY easy!

Not only did she loose her oxygen tubing, but we lost another "thorn in our side" with this...

Yep. She also lost her Mic-key button in that trip to the hospital! This was one of her very first completely "tubeless" photos! That was another dream that I never thought would come true... Vaeh being tubeless. The docs, & therapist even, made us feel as though she would never eat by mouth because of all the complications she'd had as a baby. Well, true to form, Miss Vaeh showed them to expect the unexpected when it comes to her!

Its still hard to believe, sitting here typing this post, that we've made it an ENTIRE YEAR without any type of surgical intervention! Now, our next milestones are to get rid of all her meds & possibly go longer than 3 months without seeing the cardiologist. Maybe?!

Wednesday, January 13, 2010

Meet Maddi:0)

There is a little girl I'd like to introduce to you all. She is a precious little girl, who is part of our little "club", which is how I met her & her Momma. Meet Maddi...

Isn't she a cutie pie?!! Maddi has ToFw/PA, MAPCA's, as well as duodenal atresia & reflux. She had her first open heart back in August of '09, as well as a couple of heart caths. In addition to the heart related surgeries, Maddi has had surgery to correct her duodenal atresia, as well as a G-tube placed & the Nissen. From what I've learned about Miss Maddi, she is a very complicated case of tet.

Just recently, Maddi went in for a follow up visit. According to her Momma's posts on her carepage, Miss Maddi has been given a grim prognosis. The docs are telling them that Maddi will most likely not make it past 5 years of age, unless she has a heart-lung transplant. Even with that, she doesn't have very long. :0(

I cannot even imagine what a roller coaster this family is on right now. I know they are looking into their options. More importantly, they are trusting in God. Would you all please join me in lifting this beautiful little girl & her family up in prayer?! I'm sure they'd appreciate it.

Sunday, January 10, 2010


This really stinks. Up to this point, Miss V has been having a fairly good year as far as not being sick. That all changed this past Thursday night/Friday morning.

She started sounding a little stuffed up, so we broke out our friendly neighborhood nebulizer. Then I gave her a dose of benadryl (since that's the only thing she can have) when I gave her her revatio. She woke up, so we sat in the living room until about midnight. She got me up around 2 AM with a VERY stuffed up nose. Thankfully I was able to get her back to sleep & let her sleep in (Gabby had a 2 hour delay because of snow).

The waterworks started on Friday afternoon/evening. Her nose was running & her eyes are both watering. Saturday morning she woke up with both eyes matted shut & a nose that could not be "un-stuffed". Poor kiddo:0( She's so congested that she's snoring like her Daddy (LoL)!
She is even trying to blow her nose, but nothing is coming out. No fun, I tell ya! She did sound a bit better tonight when I put her down. I'm hoping she sleeps through the night... for both our sakes!

Hope everyone else is doing well & staying healthy. I love this snow, but I'm hoping they have the forcast right. A little bit warmer would be nice!

Tuesday, January 5, 2010

Life is good:0)

Wow. Have I been a HUGE blogging slacker or what?!?! I hope you all can forgive me... life has finally been good for us here! All except for my short stint in the ER, but we'll get to that in a minute. I've just been busy enjoying having Gabby here all day since she was on Christmas break & we were just being "normal" (okay, you can stop snickering now;0)

Here's a look at what we've been up to...

The girls had a great time this year during the entire "Christam", as Vaeh would say, season. It's been really fun seeing the girls interact with each other, as well as Miss V really getting the whole idea this year. That & the fact that we don't have to deal with this anymore...

I really don't miss that orange-tinged plastic tube running across her face.

The girls were really cute opening their presents! Gabby wasn't shy at all... she tore right into them. Vaeh on the other hand, savored every tear of the paper! Jon had to tell her several times to keep going. Gabby had all of her presents opened & then even helped Vaeh with hers!

We had a wonderful few days together as a family since Jon was home half the day on Christmas Eve & didn't have to return to work until Sunday night. The same went for New Year's eve! Now the day after Christmas wasn't so much fun. I'm vowing right now that next year we will not go near a doctor's office or hospital from the end of October until at least February!! I woke up around 5:30AM on Saturday with pain all across my upper stomach & across my back about shoulder blade height. So, after about 3 hours, I decided I needed to go to the ER. If you guessed 'gallbladder' you are absolutely correct!! Ding, ding, ding!!! Thankfully the attack ended & they gave me some nice painkillers, but... it needs to come out:0( So, again I have to have surgery. Not sure when yet as I haven't seen the surgeon, but I'm hoping its sooner rather than later. It really isn't any fun feeling lousy every time you eat:0/

So, other than my lovely gallbladder, everyone here is doing well. We're all looking forward to a brand new year & things to keep going better & better for our family! Hope everyone else is have a great start to 2010!

** I promise to try to be a better blogger!