My Autumn Door Hanger

Isn't it beautiful. I stole the idea from my friend's blog. It has actually been up for awhile but I just found my usb cord this week. I love autumn and I love to look at this pretty thing on my door. When I finished it, I hung it on the door and thought, who can I show this to right now.

She's Home

We're so excited to have a our happy baby happy again. Noelle came home from the hospital at about 6:30 last night. Needless to say the kids all stayed up a little late because we all wanted to love on our baby and watch her as she was soo excited to be home again. Here are some pics of the last week. I'm so excited, it's to pack up and go home!
This is just one of the "yellow monsters" that has been terrorizing our baby. She got to the point where she would almost cry every time one came into the room, but even at this age my babies are strong. Noelle had 4 different IV's in 8 days & 17 sticks, plus her bronch and g-tube placement.
so happy even though she is in a crummy metal cage.
The kids checking out the new g-tube. This was Monday afternoon and Noelle was still feeling pretty tender. She was able to handle the pain with just Tylenol and Motrin though. Nothing we could do about her hunger pains. She had nothing to eat/drink for 32 hours.
Sunday afternoon we all went to the hospital and had dinner together. Here are the kids showing off there smiles. Noelle has an NG tube up her nose and taped to the right cheek.
We are glad to be home and settling back into a normal life. Thanks to all those who've helped with dinners and childcare. We love you all so much.

Our Newest Edition

About 10:00 this morning we found a new edition to our family. Here is a photo of what has been implanted into Noelle's stomach. The bulb part is actually in her stomach, the valve sits on top of her skin and, starting tomorrow morning we will be feeding her through this port as well as regular feedings.

Additionally she had a bronchoscopy and bronchial lavage. The bronchoscopy was in response to somethings grown in her throat culture (Pseudomonas), the lavage was to wash her lungs down. The Pulmonologist who did the bronch. said her lungs looked "surprisingly good, all things considered. We saw pictures and I have to agree. Not nearly as much mucous in there as in Tenille's. Because she had pseudomonas on a throat culture she will be going home on IV antibiotics so they also placed a long term IV (PICC line) today. They are saying she will likely be on 2 antibiotics for 10 - 14 days, Tobramycin & Cefipime. Tobramycin is known for toxicity to the ears so she will be getting regular blood draws to monitor 'Tobra' levels. The good news is that these levels can be drawn off her PICC.

Housekeeping:

Some of my readers are medical and some are not if you are the not I want to educate you cuz I'm lazy in my writings.

G-tube stands for gastrostomy tube, named for the point of entry (gastric-Latin)

PICC stands for Peripherally Inserted Central Catheter so called because it is inserted in the arm and is threaded to nearly the heart, incorrect placement can cause abnormal heart rhythms.

WBC- white blood cell count

Ototoxicity- in medicine we combine prefixes and suffixes to make new words. Oto is Latin for ear, toxicity is level of toxic stuff.

PFT's - pulmonary function tests. CFer's live and die by their PFT's Tenille's usually running 80-85%, Adam is younger and less efficient at participating in the testing so his numbers are lower however this is most likely due to him not quite knowing how to follow the directions. Noelle has not been tested because to test in most children under 4 the child must be sedated and then put in a box which somehow measures her lung function. I'm not yet sold on the idea.

Abx is an abbreviation for antibiotics.

Short and to the Point.

I've just spent the last 36 hours trapped in a hospital room doing nothing but watching tv and caring for my sick little one. Noelle had been sick for about 3-4 days when she started vomiting. Over twenty-four hours she progressed into dehydration and by 3 am Wednesday morning my husband was calling me at work to say she was dry. He brought her in to the ED and they promptly started a line and drew some labs, then bolused her with fluids. She took it like a champ, Nathan and I do not raise whimps. Then the blood hemolyzed and they had to stick my baby again. :( By the time they redrew, her labs were mostly normal but she still wasn't keeping things down and her WBC was high. They decided to admit her and at our insistence she got a bed at our favored PCH.

As things progressed she did get better as far as no vomiting, thanks to the IV fluids and IV Zofran. However once dehydration was out of the way we began to see some respiratory issues. Perhaps unfortunately for my DH he spent the first night with her and she became Apneic. That is to say that she began to occasionally stop breathing. One can imagine how frightening this would be. The hospitalists came in and immediately started her on O2, gave her IV decadron (to reduce swelling of her airway) and administered an inhaled version of epinephrin. She took two doses on the racimicepi (epinephrin), and began to settle down. Her airway remains compromised still and has forced the postponement of her g-tube placement.

So our baby Noelle currently rests in a crib that resembles a prison over at Phoenix Children's with a feeding tube shoved up her nose and down to her stomach, an IV on her foot, oxygen running through her nose at night and an oximeter on her big toe.

Can you believe that she is actually faring quite well when you compare her to other CF'ers? Over the last few days I have come to realize what a beautiful smile she has and how much I miss not seeing it. She is on the upswing now and I believe we will have a good weekend full of nearly toothless grins and wide crystal blue eyes, I bet her laugh will return too.

Thank you to our parents for the coverage they have provided over the last few days and the friends who've had our kids over to play. Currently the plan is to place her g-tube Monday AM and hopefully since she is now taking feedings through the NG tube her stay after the tube placement will be shorter.

Ashlland Photography Wins the Holy Stink Award

The Family did pictures last Saturday and Adam was true to form! Head on over to www.ashllandblog.blogspot.com to see our beautiful kids online.

PS Tiffany & Janet did a fantastic job staying with us and capturing the moments of our crazy life. They made it fun and painless, both in the wallet as well as at the shoot. Check em out!

Mother Theresa

I saw this quote today and thought it was profound.
" It is poverty to decide that a child must die so that you may live as you wish. "
The truth is at first I didn't totally get it, how are the two associated I wondered. As I have thought about it through the day I've realized some things.
Poverty does not always refer to money. I wonder if in this quote Mother Theresa was possibly referring to the poverty of character or possibly of society as a whole, maybe she was referring to the richness in the lives of loving parents too.
I'll make no statements referring to those who have chosen abortion in the past but to say that a nation who permits the killing of it's young, promotes a culture of carelessness, an attitude of quiting when things are hard, and an acceptance of shirking responsibility.
All of my readers should know by now that I have three children with a fatal genetic disease. That being said my days are filled with fun, crazy, tender, happy, loving, picturesque moments. My family brings me from the depths of poverty, helping me to recognize the rich blessings my Father in Heaven has given me.

Schwatzenburg

There's a game we occasionally play in our house. We call it Schwatzenburg. When we need to retreat we play it. The rules are a little different each time we play. This is our game:

Everyone speaks in a funny accent that can change at any moment.
There is a trigger word. When one player utters the word the rest of the players must follow up with a complimentary phrase. For example if the key word is "Father", when one person says "Father," the rest of the players follow it up with the key phrase of "Oh, How I love my Father, I really Do." Or if the word is "Trouble," When the word is spoken the rest of us follow up with, "Trouble? OOOHHHH! Notty, Notty." We change the keyword every time we play.

This game is great because there is very little to remember and it really works to change the mood in any given setting.

If you have need of retreat in your home try this one.

Really?

while cruising the blogs this morning I saw a little button depicting a man taking off his shirt to reveal an undershirt that said Husband Hero. I thought "hmm I could get that for DH to help him remember that I do recognize all he does for me." I clicked it and guess what, they weren't selling t-shirts at all. It was an advertisement for an email reminder service. Pay 12 dollars a year to have this company send your DH reminders to be romantic and show his love to you. Ridiculous! Though I think if they had a similar service for wives I might pay the money.