What it's like...

I have read this poem a few times on others blogs and i realized i have never posted it. It really hit me tonight. I think i get in routine of 'normal' life and routine and i start to take Libbi for granted. It's things like this poem that make me slow down and remember how very special she is. She is such a blessing to us, we are so lucky to have her and to have it as easy as we do. I took her to labs again today, Dr. Rose asked me last Monday to take her to get her blood done again, just to be sure everything was looking good and i put it off until today. I am horrible. I like normalcy! She looks so good all the time that it's hard for me to remember she has a bad heart. Maybe i live in denial a little bit? O well, wherever i live, i like it here :)
I changed the poem to say 'she', it normally says 'he'
Thank you to the author, it is a beautiful poem and sums it up perfectly!


What it's like to have a child with CHD
It’s Lasix, aspirin, Captopril...
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder…to always give thanks…
It’s feeding tubes(none for Libbi!), calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held her…I’d waited so long...
It’s knowing that I need…to help her grow strong…
It’s making a hospital…home for awhile…
It’s seeing my reward…in every smile.
It’s checking her sats…as the feeding pump’s beeping(again, thankfully none)…
It’s knowing that there… is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy…I sometimes miss…
It’s asking…do her nails look blue?
It’s cringing inside… at what she’s been through.
It’s dozens of call to her pediatrician…
They know me by name…I’m a mom on a mission
It’s winters home bound…and hand sanitizer…
It’s knowing this journey…has made me MUCH wiser.
It’s watching her sleeping…her breathing is steady…
It’s surgery day…and I’ll never be ready.
It’s handing her over…I’m still not prepared…
It’s knowing that her heart… must be repaired…
It’s waiting for news…on that long stressful day…
It’s praying…it’s hoping…that she’ll be okay.
It’s the wonderful friends… with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar… down my child’s small chest…
It’s touching it gently…and knowing we’re SO blessed…
It’s watching her chasing…a small butterfly…
It’s the moment I realized…I’ve stopped asking…why?
It’s the snowflakes that fall…on a cold winter’s day…
They remind me of those…who aren’t with us today...
It’s a brave little girl…it's watching her playin…
Or a special heart bear…or a frog in the rain….
It’s the need to remember…we’re all in this plight….
It’s their lives that remind us… we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.
-Author Unknown

Lib's 1st Birthday!!!

What a great day! Libbi had such a fun time being spoiled rotten! She had plenty of help from her sister opening presents!

She got this cute stroller from Grandma and Grandpa Head.

Man she sure thinks she's big stuff with this thing!

I think she is too :)

Read on for plenty of birthday fun! It wouldn't fit in just 1 post, or even 2!!!

The cake!

I was really happy with what we ended up with for a cake! When i first went to get it, i was not. I had ordered a butterfly, hoping it would be 3d like this one, and it wasn't. So i just asked if i could buy this instead! I loved it.

These poor kids, i made them all stay outside in the freezing cold. They had plenty to play with and tons to do so they seemed fine, i just felt bad. I wanted a party, but wasn't willing to risk Libbi getting sick again! This is where they sat to sing happy birthday and watch her eat her cake. She sat in her highchair in the doorway :)

Look at her face, she's not so sure she likes the attention!

MMMMM!!!! She liked it for a moment, but then the frosting on her hands was really bugging her, she started crying, and that is NOT allowed on her birthday. I had a back up just in case.....

....her HUGE donut!!! Libbi's LOVES glazed donuts so when i saw this it was a must! And she did love it more than her cake!! (and so did my brother!)

All in all it was a great party! Thanks everyone for being understanding and helping me keep the kiddos outside!

More party pictures!

Libbi's quilt

For Libbi's birthday we had a quilt made for her. This isn't just any quilt, it's a special quilt, for a special gal :)
It's so soft, she LOVES it!
..it even doubles as a tumbling mat!
It's so big, she will be able to use it forever and ever.
She's pretty happy with the curly ribbon that was on the wrapping, maybe i wasted my money on the quilt, i should've just bought her ribbon!
The story behind the quilt. I decided to make Libbi a quilt to represent her 1st year of life. I picked out the fabric, cut out the squares and had these cute ladies in Logan quilt it for me. Each fabric represents something in her 1st year of life.

14 xrays (the heart paisley)

13 echos (the multi polka dots)

9 days in hospital (lighter stripes) Plus 2 for this recent stay

2 heart caths (darker pink stripes)

1 heart surgery (the brown with white polka dots) We also used this for the binding.

The plain pink and brown are just filler squares, there are 24, i decided those could easily represent how many times she's been stuck.

Compared to another heart baby, this is not much, but compared to my other children, she has been through a lot her first year of life! She's such a trooper, we love her so much!

Grammy's bday in the hospital

Ok its getting a little ridicuolous in our family. Sicknesses everywhere!! I wrote about Anna, so she spent the weekend of the 5th at PCMC. Then Libbi got sick with nasty flu/throw up/poop bug and got put in the hospital the weekend of the 13th, which happens to be my moms birthday! THEN Anna just spent the weekend of the 20th in the hospital for RSV, so she missed Libbi's party, which was sad, they are best of friends :) I'll be honest i'm a little afraid what this weekend may bring. We're setting quite the trend. Let's hope not i'm not sure i can handle another hosptial stay.

Happy Birthday to Grammy!!
She tried popsicles, not sure she liked the cold feeling

This is her new 'trick' i'm certain she learned it from her sister who rolls around the house rather than walking. If we say Libbi do tumbling, this is what we get :)

Chillin with dad watching March Madness

For future sake i am going to type a long boring report of her sickness. Read at your own risk :)

Libbi started throwing up on a Tues night. We heard her making some noise, waited a bit then went back to sleep when we felt like she was ok, if we go in her room, we wake her up and she makes noises alot in her sleep, coughing etc. The next morning we discovered she had thrown up. Talk about feeling like a piece or crap mom! She didn't make more than a tiny peep in the night, i had no idea she was puking all over herself :( Wednesday she threw up a couple times, one of which was in the car, again i didn't even know til i got home and went to get her out. Not a peep! She threw up again that night, we got up cleaned her up and went to bed. The next morning, she had thrown up on herself again, without us knowing! We heard nothing, and let me reassure you, i am a heavy sleeper but Kurt IS NOT! He wakes up to every sound she makes. By Thursday i decided to call the Dr, mainly to make sure he would be in on Friday if i needed him. When she was throwing up, it wasn't alot coming out, and she really wasn't throwing up a ton, only maybe 5 times in the 2 days. I was mostly being paranoid due to Anna's weird virus she had just been in the hospital for. Well of course he wanted to see her, even after me saying, "i really think she's fine, should we give it another day?" So i took her in on Thursday and at first Dr. Rose was thinking she had a bt shunt, so he was worried about blood clotting in her shunt from being dehydrated. We then talked and he realized she did not have a bt shunt, he still felt he should hospitalize her, just to make sure her heart was ok. She showed NO signs of dehydration. She wasn't lethargic, and her skin would come back to the normal color in just a couple seconds when you would press on it.(that's a test of dehydration i guess) Well, once she was admitted and had the blood work done, she was way worse than he had anticipated. Her blodd sugar was extremely (dangerously as he worded it) low. And her bicath (i think) was way low too, meaning she was very dehydrated. Ok so i just have to throw this out there, her oxygen is always low, her hemadocrit is always high, do you think these numbers may be off due to her heart, and maybe she wasn't really that sick at all??? I don't know, just my thoughts because again, she showed NO signs of dehydration. Anyway, she stayed Thur and Fri night and got to come home Saturday afternoon. I had to take her in for blood work twice last week and he wants me to take her again this week sometime, her liver enzymes were a little high still, and he wanted to make sure her blood sugar stayed up. I'm just getting up the courage to go :) Her 1 year well visit was yesterday so she had 4 shots! Yes 4! So i thought i'd give it a day or 2 before more pokes. She is fine and well now, thank goodness! Thanks for reading if you did, i know that was alot of boring information for most of you :)

Happy Birthday to Libbi!!!

WOW!!! Lots of emotions going on today. I have been thinking back to 1 year ago and it is tough. My mother in law tells me to stop doing that. I am trying but it's natural it think :) I can't believe how far we've come in 1 year. How far Libbi has come! But today is a day of celebration so i will save the 'feelings' post for later. Our plan for the day includes
1. waiting for Libbi to wake up so we can sing to her!
2. dressing her up, doing her hair and getting her all pretty!
3. decorating the house, and o my do we have lots of decorations!
4. letting Libbi do whatever the heck she wants, she's the boss today! (of course within safety limits)
5. kissing, hugging, ooooing and aaaahhhing over her ALL day!
6. singing more happy birthday songs, some of which i'm sure we will make up as we go!
7. Taking lots and lots of pictures and videos (stay tuned)
8. running around, pick up Libbi's cake, make cake for adults to eat.
9. Put her pictures in frames all over the house to display!
10. 3pm PARTY!!!!!!!! Woot Woot!
What a fun day, i can't even wait for her to wake up, maybe i should wake her? O but wait, that would conflict with #4. I guess i will be patient :)


ANNA
Now on a sad side note, our little Anna(15 months) who is my brother (Chase) and his wife's (Jana) baby, and Libbi's bestest friend, is spending Libbi's birthday in the hospital. 2 weekends ago she spent a few days down at PC with an unknown virus, losing her hair, sores in her mouth and weird head stuff going on, like her head had soft spots all over and a rash. After an MRI, cat scan and some other tests, they sent her home with a diagnosis of 'unknown' or 'just a virus' well she has never really got better. Once she got home, she still threw up and had diahrea. This week she got a cough and the head symptons returned. They noticed the sores in her mouth were back, or never really went away. Jana demanded blood work be done, they are still waiting for results on some but RSV came back positive, they admitted her last night and they now think she has pnemonia. Her fever was 105 last night at the hospital. Poor family, my heart just hurts for them. Please keep them in your prayers and if any of you have ANY idea what may be going on with her, let's hear it. For now, it's still a mystery.

Heather :)

I went today, requested the iv team, was told that the iv team will only come if she had a pic line, told them the problem, they said they'd give me someone different, Heather walks out, i told Heather to please not stick her if she wasn't confident there was a good vein, Heather pokes around a bit, says she's feeling good, pokes Libbi, draws blood, give Libbi a treat and we were done! How easy was that! Thank you Heather! I will be requesting you from now on.
The Dr. office just called and her blood sugar was 69, which is good! He wants me to take her Monday again just to be sure it stays up so we will be seeing Heather in a couple days :)
Things are good, life is grand. Libbi will be 1 in 2 days!! More like 1 day since today is practically over :)

Feeling weak

I have officially hit a wall. I feel like i am giving up. I can't even begin to explain how much i hurt for all of you mothers you have it WAY worse than i do. This is really not that big of a deal but Dr Rose called today and said the blood work we had done on Monday was still concerning, low blood sugar and low (something else, can't even remember) but it means she's still dehydrated. He wants me to take her again in the morning to see what her numbers are. Well since all she has done since Monday is poop, i'm pretty sure they won't be real great. I am so scared they are going to put her back in the hospital. I can't do it again. I can't even take her to the lab to get stuck again, i've asked my mom to please take her. Let me tell you the problems with the arm stickers at Mckay Dee. They aren't trained in pediatrics, or if they are, they need more. At Primarys, they were so good at finding veins, but when i take her to the lab here it's always the same story, "We need to strap her down, she's soo strong!" "We can't find a vein, her veins are so tiny!" " We need to try the other arm" "O this arm is worse!" ...and so on. After 20 minutes of hyperventalating from screaming so hard, 3-4 pokes later, 2 pink arm bands, and a treat from the box (let's be honest, that does NOT help!) we are headed home. Seriously so heart wrenching. I know, i'm being a baby. I am trying to be strong, i just needed to vent :)
Help me, give me advice on how to stay strong for my baby girl. I am weak.

15 hours of sleep!

Libbi went down at 4pm last night, woke up at 8:30 this morning!! Holy cow she must've been tired! It was daylight savings so even though she woke up at 8:30 it was more like 7:30 in real life :) Still, that's alot of sleep! And the sadest part was, she was covered in poop when i went in to check on her, i actually woke her at 8:30 to clean her up because it was EVERYWHERE! Who knows how long she would've slept if i hadn't woke her up! Poor girl! But so happy to be home :)

Home sweet home

We made it home this afternoon. It was not fun. It was worse than surgery at 6 months old, let me tell you why..
1. I was prepared mentally for the surgery
2. She was 6 months old, not 1!
3. She was pretty heavily sedated with surgery so she slept alot
I know that's seems silly but it was really hard to keep her entertained, she didn't want to eat the lactose free formula so she cried ALOT! Then i got sick today and had to do all i could to just keep on going for her. It was ugly. It made me really scared for surgery in a year or two. I can't even imagine trying to keep a 2-3 year old entertained in a hospital room. Yuck i don't even want to think about it. For now, she is happy to be home, she got here and was speed crawling into every room looking for the kids! They weren't here but they got here quick, and they were just as excited to see her and she was them! She went down for a nap at 4, i think she may sleep all night! I love it here, i may never leave again :)
And just a word to the wise, keep your little ones in as much as you can right now. This stuff is ugly. My niece, and my sister in laws niece have both been hospitalized this week too! And i even caught it, i am the biggest germaphobe out there just ask my family! It is noooooo fun!

Update

Over-nighter turned into 2 nights :( She isn't throwing up anymore but is still have d really bad. Also, she won't eat. They switched her to gentle ease formula, which she doesn't like. She won't eat it at all. She did drink some pedialytle and juice last night finally so we will see how the morning goes. Cross your fingers she can come home today, Kurt can't take another night there! He is such a trooper, he stayed both nights with her. I am a bad mom/wife if i don't get my sleep (and sometimes even if i do) so i came home with the other kids. They are testing for roto virus, we will see today if that's it.

Over-Nighter

Tonight Libbi is spending the night at the hospital, Mckay Dee not PC. She has had a flu bug since Tuesday night and today i finally felt i should call. She was dry heaving, i felt that was enough. They got me right in, and Dr. Rose said she needed to be admitted, worrying about her blood thickening and creating a blood clot in her shunt. He wasn't even concerned about dehydration at that point but luckily he admitted her because she was way dehydrated. Also, her blood sugar was extremely low. So tonight she is with her dad and i am home with the other kids. I need my sleep to be strong for her tomorrow. I thank Kurt for staying with her :) I hope this is a one night stay. And after this, we will be EXTREMLY cautious about germs and sicknesses. RSV sister and hospital stay in the same month is enough to scare me half to death :)
On a side note, Tuesday night when she threw up, we slept right through it. We didn't even know until morning. Then she threw up in the car while i was driving.. had no idea til we got home. She didn't make a peep. She is a funny girl. Very tough.

Libbi's 1 year pictures

Go check out the rest of her pictures on facebook! If we are not friends, i'll add you as a friend. I will be posting them onto her blog as well, just may be a bit :)

Little fighter!

Libbi is still doing just fine! Her cough is going away and she is on the mend. She didn't get worse at all, she just keeps getting better! I feel so lucky and blessed, i was really scared there for a bit. I'm not surprised though, she is a little fighter! She doesn't let anything knock her down! And it's her birthday month! 18 more days and my little life changing miracle will be 1! I can't even believe it. Luv you Libbers!