CHD video

A fabulous mom of a heart baby, named Ashley Meyers, recently created a video of CHD (Congenital heart defects) warriors and angels. Kaia is one of the babies in the video. I want to share this with you all, not just to show you that Kaia made a video, but to tug on your heartstrings a little and help with CHD awareness. Did you know that two times as many kids in the US alone dine from CHD than all childhood cancers combined? It's the #1 cause of birth defect related deaths. This year, 4,000 heart babies won't live to see their first birthday. Kaia was one of those babies. She appears in the video at 8:24 into it, but I think that changes as kids get added all the time. Please spread the word and let's all work to help get funding for this epidemic! It gets VERY LITTLE, and therefore, there is little known about it or what causes it or how to prevent it. I embedded the video below, but I don't know how to make it so it fits the space. So, if you'd rather, please go HERE.

Make photo slide shows at www.OneTrueMedia.com

New year is coming, let's make it green!

Hey ya'll! I just decided that January is going to be "Green month" for Out of habit. Every day (or every day I'm able to) I will post a "did you know" fact about the environment or organic facts or some other miscellaneous sustainable living tidbit. Keep checking back to help make your new year, a new year of changes to better your lifestyle and your impact on the earth and your health!

I hope you all have a very merry Christmas! I can't believe tomorrow is Christmas Eve already. We will be heading to Eric's family's tomorrow, and to his sister's on Christmas day and then we are off to PA to visit my dad and Aunts and cousins. For everyone else who is traveling, please have a safe trip and a Christmas full of love...the most valuable gift of all!

Peace,
The Urbans

etsy is the new ebay

I just read an article on the FRONT PAGE of yahoo today about a girl who quit her real job to sell knitted items on Etsy.com. She now makes $140,000/year. It would be amazing if I could get even 1/3 of the way there! Please share my site with your family and friends and help a local gal in her new *hopeful* career! Orders are slowing down, and I need to see the light again! Gotta keep believing.
Thanks all! http://www.littleliondesigns.etsy.com/

Excellent lesson

I was really upset after a bout with our neighbors regarding smoking in the hallway this morning. She had me fuming because after asking her dozens of times not to smoke in the common area because of the fact that it blocks ability to get pregnant and causes miscarriage and birth defects if you are pregnant, she responded with "karma's a bitch n maybe u should eat some meat n ur kid won't have heart problems". It took everything in my power not to walk downstairs and rip her head off. And I got this from my girlfriend right afterwards (in regards to the situation) and it helped a lot. So, I thought I'd share.

"People are often unreasonable, irrational, and self-centered. Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyway.
If you are successful, you will win some unfaithful friends and some genuine enemies. Succeed anyway.
If you are honest and sincere people may deceive you. Be honest and sincere anyway.
What you spend years creating, others could destroy overnight. Create anyway.
If you find serenity and happiness, some may be jealous. Be happy anyway.
The good you do today, will often be forgotten. Do good anyway.
Give the best you have, and it will never be enough. Give your best anyway.
In the final analysis, it is between you and God. It was never between you and them anyway.

--MT "

And as my Aunt told me, if you look in the mirror and are 100% happy with the girl looking back at you and know that your decisions were the right ones for you, then that's all you need to worry about. She said it so much more eloquently, but you get the drift.

Peace to you!

exclamation point!

A friend of mine has a blog, which is in my blog list, and she's an amazing writer. I read her blogs and think "wow, this woman is in my head stealing my thoughts!". Anyway, she's brilliant at writing, and I completely missed this one blog she wrote mentioning Kaia. She just told me about it. I wasn't spending much time on the internet then, because the internet is not a place to be when you need to heal. I think I didn't touch it for weeks and had hundreds of emails stacking up. But I just now read it, which means I was meant to read it this morning. And I'm glad I did. the sun is shining just as it did on the day of her calling hours. And I'm reminded of her. It's not a sad remembrance. It's full of light and love and it has me smiling. You can read it here. Thank you Shan!

oh Christmas tree!

Saturday we are going with Eric's family to get our first real Christmas tree. I've always been against real trees, but I am now picturing all of the face plastic trees filling up landfills. I'd love to get a bulb tree and plant it, but we rent...
I'm contemplating going with LED lights but haven't seen any that I like so far. They all have a purplish tone and aren't warm and friendly like the regular white lights. Eric wants colored but the big bulbs. Those are fun, but I prefer the white. They are more serene.

Anyway, I was just thinking about Christmas and what it means. We are not doing many gifts this year. We want to focus on what it really means. Well, I do at least. ;)
I'd also like to take this time to say that we won't be sending out cards. Between the cost of cards and stamps and the environmental impact, I just don't think it's right for me this year. So, I apologize if it seems we are bah humbug about it. But we definitely still wish everyone a fabulous holiday with their families. Be safe, be merry and over all, be healthy.

Merry Christmas!

Yay for tarot!

Here's my reading for the day:
"The Wheel of Fortune
The wheel of fortune is turning in your favor. Many projects can now enjoy great success. Soon be time to reap benefits of what you are sowing. A cycle is continuing. Success. Unexpected luck. Happiness. Something new is emerging and will bring new and exciting energy. Opportunity. Have faith in what is happening at the moment. Divine forces at work to bring good fortune into your life. Trust in the cycle of life. Possible new money on the way."

I love it! I do have lots of orders to fill right now (so I really shouldn't be on the internet, but I need my fix!).

Two days ago I made a huge change in my life. I had to let go (hopefully temporarily) of something that I allowed to consume every thought, which pulled all of my energy out of me. My fault for choosing those thoughts over healthier ones. But I couldn't stop, no matter what I tried...meditation, yoga, art, music, therapy. I struggled with having to let go for the sake of health and my own productivity. Negativity can be a straight jacket for my brain. Only being able to focus on that was a wedge in everything I've been trying to do in my life....heal, move on, grow a sustainable and productive business, have another baby, etc. Though it was hard, I believe that it will be better in the end for EVERYONE. Since then a weight has been lifted. I've been working on myself, and I'm already seeing positive results in my life. I feel better about myself which is giving me more confidence in what I'm doing. I'm now realizing my blessings and reveling in them. When I realize where my life has taken my career, I prance around, giddy with knowing that this new venture of mine, is the real deal. After not even two months of doing it, it's already a success! It is only now that I can focus on that and know that our baby girl has had the biggest hand in getting it to work, and for that I owe her all of the credit.

I see people who live a life where they are always seeing themselves as the victim of something. (insert me in my last career here). To that, I believe the only one doing the victimizing is yourself. You choose your thoughts. You choose your path. Last week someone told me "you can't change anyone else, you can only change yourself. Don't get caught up in other people's lessons. And remember, there are no friends or enemies, there are only teachers." Two huge lessons in one honest statement. It turned on a huge light in my life that I intend to follow and remember forever...which is why I decided to put that on here. Not everyone gets to talk with such great advisers, and maybe it will help someone else too.

This post is my big cheers to positivity! May it fill all the little crevices of you and overtake the negativity. Bottoms up!

Penelope update. Good news!

Penelope had her heart surgery on Tuesday afternoon. Laura said it went pretty well. She is in recovery right now. They closed up her chest cavity on Thursday. They left it open for a couple of days because her capillaries were "oozing afer the surgery". She will be in recovery for some time. They don't know when she'll be out, and most of us heart parents can relate to that. They never give you a definite! But with lots of positive energy and prayers, she'll get out sooner. So, keep em up! And thanks to you all for being lovely followers of the blog. You're helping others with your thoughts.

While I'm posting news, I wrote about baby Hope a few weeks back and asked for prayers for her. Well, little Miss Hope showed us what she's made of and look at her now! She's home and doing fabulously!

Okay, I'm off to watch OSU school Michigan....and then off to Planet Green.
Happy Saturday!

Prayers for Penelope

Hey all! I got some bad news the other day about another baby born with a heart defect. Little Miss Penelope Jane Ross was born with her aorta and pulmonary valves in the wrong place. She is stable right now but is supposed to have surgery this week (I'm not sure of the day). She is the niece of my friend, Laura, who is an amazing woman. Her and her family are very scared for little Penelope right now, which is very understandable. Please keep mom, dad, baby and family in your prayers. They need lots of strength right now. I'll update when I have one.
Thank you!
Steph

open house!

Hey all! So, I was asked to be the featured artist at Planet Green for our open house on November 28th. I'll have all my work here to view/purchase. There will be other local artists/craftswomen here, as well...along with food and refreshments and lots of holistic advise from Rebecca Reynolds. Feel free to stop on down! Should be a nice zen-filled treat of a day! Here's the info page.
xoxo!!
Steph

new piece

up for sale here.
:)


Heading to planet green to work. Come visit me!
Enjoy the weekend!

open for business

Hello all! I'm proud to announce the opening of my online etsy shop. Please check it out and pass it along to friends/family! I named the company "Little Lion Designs" after our baby girl (we called her little lion often!). I might be repeating myself here, but I'm using mostly repurposed fabrics from old clothes I've cut up or have been given...or I have found at local thrift shops. All clothes are washed in an eco-friendly baby-safe detergent I get from another etsy seller (crunchy clean). So, the fabrics are freshly cleaned and then turned into art. I am going to be constantly updating inventory. So, new art should appear weekly. And remember, I do custom orders! Any size, any colors, any images....I'm at your demand. Click here to get to the store.

I am also working part-time at Planet Green in Rocky River. I know I'm repeating that too, but I want you all to come visit the shop, if you can. Christmas is coming up and we could use more locally produced, ethically made, sustainable-living products in our lives. I really like it here so far. It feels very Zen. I might not make much money, but my soul is much more peaceful now that I am doing things I believe in.

Not much more going on here. Pretty quiet and restful for us. Looking forward to being snowed in, all cozy-like.

I hope your fall is as pretty as ours. :)

Baby Aiden

Hey all, I hesitated posting this, but baby Aiden (who I requested prayers for in a previous blog) had his heart surgery on the 23rd and didn't make it through. His parents need the prayers now, and I ask that you send them a few. You can read details at his blog here.

I don't understand why these things happen. It's so so sad. I asked Kaia to meet up with little Aiden and show him around.

frog

I love him.

my new career?

So, most of you know I got laid-off, along will 20-30 other designers at my company. They laid-off every designer in the whole company. Not really sure of the "strategy" there but...I was pretty burnt out. After 3 design jobs, in advertising, in-house and publishing, I think I'm done. I feel I reached my max pay at my last job, and all jobs (all one of them in cleveland) would be a paycut. In order to NOT have to go back to a stressful and time-consuming job, I've landed in the lap of a great opportunity. My fabulous sister-in-law got talking with a lady who owns Planet Green in Rocky River about the piece of art I made from scrap fabrics from Kaia's nursery. Turns out, this lady is a shining hope in my life right now. She asked Kim to have me call her, and I did. She gave me a part time position in her store and wants to sell my fabric art from there. She makes it sound like I can really do this as a living. The day after I got laid-off, I was listening to "this american life" (holla!!!! who listens? it's great) and the episode was about Plan A. The gist was that most of us are working at jobs that are plan b, c, d, e, etc. But sometimes those jobs can get you back to Plan A.

I never was a huge career oriented individual. I felt pressured to go to college from friends and family. I went. I graduated. I now owe (still) $27,000 to that school and am super done with my graduate profession. Now edebted to them until I'm 52....I've decided to take my lay-off as a means to get back to plan a...with the help of this new gig. This week, I rushed to get 6 pieces together in order to have a base (and an idea of how to go about this) of artwork to sell. It's all made from re-purposed fabrics, because, let's face it....buying new fabrics for this would not be so green to sell at Planet Green. And, I'm a recycler! So, it's all non-toxic, voc free and completely green art. It's all for sale (hopefully) next week at planet green, but I will be eventually creating a web-site to sell it too. If you want a piece, let me know! I can do anything in any colors and any animals, scenery, etc. Here's what I did this week, the sizes range from 8x10 to 16x20. I have a couple of humungo canvases in the basement I can create and also can do pretty much any size anyone would want. Some of them look spotty and the colors look off from the originals, but i swear it's the camera and not the art. I used repurposed buttons from the shirts I bought at the thrift store, so no new plastic there. And the chording on some of them is metallic and also recycled from christmas present wrapping and such from the past 10 or so years.

please share!
Here's the one I made for Kaia. I have to name the company after her somehow. Open to suggestions! Kaia's Kandles maybe? lemme know. this one is NEVER for sale. ;)


Here are the rest:
This one is pretty big.

good news and continued prayers

Since finding out that someone posted Kaia's story and prayer requests on babycenter.com's forum for babies with heart defects, I've been an avid reader/prayer for other heart babies on there that are still struggling.

A lovely lady, Paula, from there was following Kaia's story after she found out her baby girl has HLHS (hypoplastic left heart). Baby Hope was born September 14th with kidneys deemed "too underdeveloped for surgery" at the hospital she was born in. Instead of "taking her home to die", mom and dad took her to the Cleveland Clinic for a second opinion, where a God-sent surgeon agreed to give Hope the Norwood surgery, the same surgery Kaia had. In under two weeks post-op, baby Hope is now in the step-down unit, getting ready to go home with her family. Please keep baby Hope in your prayers. She still will need the other two surgeries HLHS kids need to get them to where they need to be to function as well as possible. She has seen many miracles and, no doubt, will be seeing many more. She's been close to my heart and constantly in my prayers. Her story is here.

Another baby needs many many prayers, as well. His name is Aiden and was born to two very loving and extremely devoted parents, Levi and Tracy. Aiden was born on October 9th and has multiple heart defects including unbalanced AVSD with pulmonary atresia and heterotaxy syndrome). I read his story and am all too familiar with the words and feelings and raw emotion of watching your child, wondering if you will ever be able to take them home. Giving it to God's hands and trusting Him to help when all medical options seem to be failing. Baby Aiden will need a full heart transplant, and it looks like they may have found a hospital willing to do it. Please keep baby Aiden, mom and dad in your thoughts and prayers. You can see his sweet face and follow his story here.

there are so many kids out there with these defects, and it's something I never thought nor heard about until it happened to us. These children are truly amazing and special and have shown strength in unfathomable ways. And after being a parent to a heart baby, I know the kind of strength it takes for the moms and dads to get through it as well. They need lifted as well.
thanks for helping!

wow, the not so truth comes out

Finally, a press release about the company that just laid all of us off. Here's the partially, unfinished story about what they say is going on with the company. The comments are cracking me up. Those people have balls!

Read all about a part of it here.

world keeps turning

It's been a long time since I've posted anything. It's funny to me that my old blog (outofhabit.com....now extinct, thus outofanewhabit's creation) ended with a bunch of posts that started with "it's been a long time since i've posted anything". But, I won't let this one die. I swear.

It seems to be a year of extreme challenges. First, Eric lost his job. Then Kaia was born, and she moved onto her next life. Then my mom got cancer. Then my Grandpa ended up in the hospital (still there) and almost died. And now, I've lost my job, along with all the other designers at Advanstar. I'm not really sure at all why all of this is being put on us this year. It really is making me question things. I was asked last week how I keep on smiling. All I can say to that is, there has got to be a bigger plan. I can't worry about it or be angry, because anger isn't going to get me a job nor would it do so much for my marriage.

I have to remember my blessings.

The day I got laid off, I came home to a chilled bottle of white, a nice bottle of red, and two chilled shots of patron (tequila for all you non-drinkers). My husband knew I'd need a little mood chiller. He wasn't upset, nor did he let his concern show through. He simply said "yay, now we can spend more time together." I am blessed. He teaches me daily how to let it roll off. I swear he's like a good dog...he's always happy and always your friend and always makes you smile, regardless of what the world is putting you through.

So, with that all said, if any of you all know of any jobs out there, be it graphic design or bartending, please let me know. I am anxious to keep working and need it to keep our home and cars. :)

Love you all. Strength to you in your times like these.

weirdness

The past two days have been really hard for me. Kaia's been on my mind 100% of the time. Sometimes she goes away so I only think of her 25% of the time, but now my mind is heavy with her.

Today I went to my mom's to give her some soup. It was really nice to sit with her and talk. We haven't done that in quite some time, and I realize how much I need it. I feel closer to my daughter sometimes when I am with my mother. When I came home, I finally let go and cried and cried.

For some reason, I decided to, for the first time, go through and read this blog from beginning to the end of Kaia's life. It was joy and sadness....relived.

Here's where the weird comes in. The morning after Kaia passed, I received 6 texts at 9:16 in the morning. All were sent throughout the night but arrived all at 9:16, which was the time of Kaia's birth. I locked all of those messages so I could save them forever. I showed friends and family, so that I could prove this happened. They've been locked on my phone since that morning. Today, they are all gone. All my other locked messages are there, but those are not there. It's like they never existed. At first, I was really sad. I wanted to photograph each of them so that I always had that proof of her saying "mom, sleep tonight. i'll let you know i'm okay at 9:16 am after you've finally gotten your long deserved sleep". I just don't understand where they went or how. Or, did they ever exist? I showed the people that sent me those messages, and they said they sent them way earlier. but, where are they now? Why were only those locked ones the ones that are no longer there? Was it time for them to go and me to move on? How is that possible?

My good friend lent me a book called "hello from heaven". It's about after death communication with your lost loved ones. It has captivated me. And now, I look for signs everywhere. I might be crazy (let's face it, aren't we all?), but I know what I saw, and now they are gone. Today I discovered they were gone, and today I read a chapter that mentioned how our grief and sadness can often keep our loved one from moving on in the after life. Many times a loved one comes back and lets you know you need to let go. Maybe it's time to accept it and move on. Just maybe.
Or maybe verizon thought they should screw me again. ;)

Either way, I thought it was odd, and it kind of brought me a bit of peace. I'm sad that they are gone, but maybe I needed them to be. I saw it, it was there, and there is no reason to keep them. Proof was here, and now it's time to acknowledge it and move on. I realize my pain will never go away, but it is a selfish pain because I wanted her here. But she is in a place that is so much greater and was blessed to be allowed in so early. I know a lot of heart baby moms read this. A lot of you have lost your baby. I encourage you to pick up that book. It changes your idea of death and can open up acceptance of it. I know a lot of you don't believe in this stuff at all, and that's okay too. We all do what we believe is best. We all believe in things that are best for us. It makes us all colorful. And to us spiritual folk, it makes our auras colorful too.

kitty kitty needs a home

There used to be a girl that lived below us that had this sweet female indoor/outdoor cat. A few weeks after she moved, the cat came back here and lives outside our house, crying to get back in. She must have not liked her new home and traveled back to her old one here. We called the girl that owned her, but she never answered or got back to us. So, this cat is now homeless. I've been trying to feed her when she comes around, which is about once a day. But she really needs a home that she can come inside. We'd take her in if we didn't already have two male cats. She's gorgeous with long dark hair. She's very good with people and loves loves loves to be rubbed. If anyone knows anyone interested in her, please let me know. I really want her to find a home before winter comes. She's pretty skinny, even though I feed her. But I'm guessing she had no food the whole time we were on vacation. I'm trying to fatten her up to survive winter, but I would like to find a place for her before then. Please help. Thank you!

buyer beware!

a bad pic of the tear and one of several stains:

I would like to ward everyone off from shopping at Blaine Ashley LLC. I ordered two sizes of the same wedding dress from there on a thursday and paid extra for two day air. The dresses never came. After several emails requesting shipping information and a tracking number, she never sent me anything but did drain my account. To pull her heartsrings, I told her about Kaia and our wedding and that was why i needed the dresses. She said she would ship a third dress overnight. I got it and it was stained and torn. She didn't charge me for that third dress, but she used it as "proof that she sent me two dresses". Now I have no dress and am out $352. I tried to file a dispute with paypal, but they "have proof that she shipped me my order". It's so ridiculous. Anyway, please don't shop there. I have filed with the BBB and with an internet crime organization. I'm not going to dwell on it, but here is an open letter to that small little company. It's got a bit of drama to it.....

Dear shopblaineashley.com store,
I have fallen into your web and have been totally taken advantage of by you. You ripped me off of $352 for no reason other than greed. I figured I would give you a little insight about what I've been through this year to show you how evil you truly are. I was due May 19th with our first child. We thought she was healthy and fine. Day three in the hospital, she started having trouble breathing. They rushed her to rainbow babies in cleveland. She was diagnosed with hypoplastic left heart. She had open heart surgery on my birthday, June 9th. That same day, my mother was diagnosed with stage 3 non-hodgekins lymphoma and had to start chemo almost immediately. My daughter and my mother were in the fight for their lives. For 34 days, my husband and I lived at the hospital. We slept on a single couch together the entire time. After 3 arrests, several procedures and several weeks post op, my daughter looked at me, started panting and crying and passed on. There is nothing more painful in all the world as losing a child. To top it off, I'm now still facing losing my mother. The only light in the tunnel was our marriage. After spending so long in a hospital, we needed to get away. My father gave us the money to do so, because we have literally thousands of dollars in medical bills. Kaia came close to totaling 2 million at the hospital. The wedding dress I really wanted was $600, but we couldn't afford it, so, I came to blaine, found this dress and a 30% off coupon and thought I had it made. the dresses never showed up. You acknowledged it to me, knowing that paypal can't use emails as evidence and sent me the "last dress you had" which I'm guessing was yours and you took it from your closet after wearing it several times and sent it to me. You never refunded me the money for the dresses like you said you would. You used that one dress shipment as "proof that you sent me two dresses". When, if i had two dresses, I'd certainly send one back because i would never need two sizes of the same dress. Instead of doing the right thing, you chose to cheat someone. You chose to cheat someone who's had the worst year a human can have. You chose to show me exactly how careless and evil a human can be. You are the epitomy of all that is wrong with this world. I believe in love and caring. I believe in human spirit and helping others. You might think that you have won. But you have not. At the end of the day, you have to live with the guilt of knowing what you did to someone who was so not deserving of your evil. If you have zero heart and an inability to feel guilt, then I do believe in karma's ability to right what is wrong. I believe in the bible and that you get what you give, ten-fold. In the end, you may have gained $352. BUT, I believe your business will lose that times 10 in the future to teach you a lesson. I certainly will never shop there again. The thousands of people I know will never. I will make sure of that. That probably means nothing to you, but I also have reported you to several agencies who are undergoing investigations on you. You could have been fair and done the right thing. But you chose your path. No matter what happens, I rest assured knowing that I am so much of a better person than you. I will never think of you nor be haunted by you. I hope my baby girl haunts you. You took the only light we had in our dark tunnel and crushed it. That is the most hideous thing a human can do. I will make sure the world knows.

Thank you,
Stephanie

wifey

Trunk Bay lifeguard station and Eric:


I'm a wife now. yay! We had a beautiful trip the the USVI. I have to say that st. johns is one of the coolest and most amazing places in the world. As 75% national park, it is kept very pristine and clean. The beaches were amazing there, boasting fine white sand and pool-like turquoise waters. Our favorite was honeymoon beach.


After the wedding with the fabulous Anne Marie Porter, Eric surprised me with a private catamaran sail through the islands. The boat picked us up on Cinnamon Bay beach and we sailed through the BVI and several uninhabited islands of the USVI. Our captain brought us to Waterlemon Cay, where we hopped off the boat and snorkeled around the little island. We swam up onto the island and left Kaia a message in the sand.

When we swam back to the boat, he had munchies and wine and beer for us, and we watched the sunset as we sailed back to our wedding beach. Amazing. Thank you, Eric!

I got over 130 bug bites, which made me a horrid hideous pussy mess for the next several days. That's about the only negative of the trip. We visited 8 different beaches but saw dozens more from the boats or driving. Coki beach was our favorite on St Thomas. It had a real Jamaican vibe with little hut bars all along the beach and some seriously good reggae booming. We ordered buckets of red stripe, burned the hell out of our skin and snorkeled. A totally awesome experience.

Each beach was very different from the next. From Coki, where there were dozens of locals, to honeymoon, where we were about the only people there, there really was a beach for every mood. Our resort on St Thomas was really nice. We pricelined it and got it for $100 a night. The rooms start at $265/night. We were really patient when checking in and got a huge ground floor room overlooking the ocean and the pool. It was one of only 8 with a private entrance.

So, that is about it in a nutshell. We haven't posted all the pics, but I will do that soon. There is a lot of work we need to do and finish up before I can get to fun things. We spent the entire day yesterday sorting medical bills and paying some of them. It's all really confusing! Anyway, we are married, and you may now call me "urban-i-fied".

Surprise!

So, we've pretty much kept it a secret so far, but Eric and I have decided to tie the knot! We are heading down to the US virgin islands at 4am Monday morning. We'll be staying on St Thomas most of the time, but have a nice beachside cottage on St John's for our wedding night and the following night.

Eric found our minister, who was featured on the travel channel and does these beach weddings for a living. Her name is Anne Marie Porter. We're getting married on Cinnamon Bay on St Johns.
www.cinnamonbay.com
the rest of the time we will be here on st thomas: http://www.marriott.com/hotels/travel/sttfr-frenchmans-reef-and-morning-star-marriott-beach-resort/

It's insane to think that our daughter gave this opportunity to us. Both Eric and I have been off of work since she was born and have not been able to heal enough yet to go back. So, we thought we should take a nice trip while we had the time off. My Dad and stepmom made sure that we went through with our plans and gave us the best gift of all and took care of the trip for us. We couldn't have done this without them and the additional help from Eric's Grandfather and Mother. Thank you all for helping us with our expenses so that we can call each other "husband and wife". And thank you to everyone who contributed to Kaia's medical expenses. Thank you's are still being written and will be out to all of you soon. :)

Anyway, this might not be the most conventional way to tell everyone of our union. BUT, we are not conventional people. We were a very close couple before Kaia was born. And she brought us even closer. I believe that being able to share the same last name as her and the man who gave her to me will help in our healing process. We love you and thank you, baby girl. Look at all you've done. I am so proud of you.

We will share pics and video (thanks to Dad n Jack again) with everyone when we return. In the meantime, we'll work on child #2. (tmi, i know...)

kisses and hugs to you all!
love,
Steph & Eric

videos

Lots of videos of our little angel at youtube.com
search "kaia belle" and the first video is of her. then click on that video and the rest of them should be on the right side of that page.
here are some, but please go to youtube to see them larger and to see the whole batch. We took them on our camera, so some are very dark. I wish we would have had a real video camera on her all the time so we had more....but.....:




Before the surgery:

Thank you

Thank you to everyone who came to show us your support on Tuesday. I know there were a lot of people that couldn't make it, and we thank you too. It's overwhelming the numbers of people that knew and loved our baby girl. She changed so many lives and inspired so many others. We are just so so proud of her. Her 34 day life may have been short, but it was definitely not small. She was so huge. She was bigger than life. She did more with those days than most people do in a lifetime. We know she had a purpose. We know she still does have a purpose. We thank you for seeing her purpose and remembering the life lessons that she taught all of us.

I started this blog for our FAMILY....so those near and far could follow our children as they grow. Kaia was, is and will always be that first child. But she will not be the last. Please feel free to continue following the story of our family as we grow in numbers, strength and spirituality. We have been so honored to have you all be such a huge part of Kaia's existence. We hope that you will continue to follow our story, as she will always be one of the biggest parts of it.

We love you all & thank you for what you gave us. We hope the strength she showed stays with all of you, as it will for us. May your love light be a little brighter, too.

Love,
Steph, Eric & Kaia

Visiting hours

Eric, Kaia and I would like to invite everyone to come meet our gorgeous little angel this coming Tuesday, July 7th from 4-7 at McGorray Hanna Funeral Home in Lakewood for visiting hours. In lieu of a funeral, we will be having a memorial service for her, after she is cremated. Details of that are still being determined. For now, we just want everyone to meet her before we send her off to God.

Kaia, our angel

After she passed...



I haven't been able to write this blog. I wanted her online story to end with the last happy day that Kaia had in her short life. I don't want to talk about her downward slide after tuesday. I will skip Wednesday and go straight to Thursday, the last day of her life. Kaia slept the entire day. Dad and I knew something was wrong. She was very lethargic and bobbed her head with every breath, a sign of labored breathing. We pointed it out to the doctors, and they upped her heart medication. Kaia went back to sleep. We had family at the hospital and went to the cafe while she was sleeping. I came back to her room in the PICU alone. She was still sleeping. I whispered "hi my pretty girl", and she immediately woke up. So, I sat next to her and stared at her and she started panting. She stared at me and wouldn't look away and was breathing really heavily. The nurse said she was just fussing. Kaia never fussed with her eyes wide open before. I knew she couldn't breath. I heard a gag and a choke and I grabbed the nurse. The nurse looked at her SATS on the screen and started pushing panic buttons. I turned around to see her heart rate drop to almost nothing. They immediately started cpr. The doctor told me they had to put the breathing tube back in and asked us to step away but to kiss her and say goodbye first. They had her stabalized, so we had no idea we were saying goodbye for good. But Kaia knew. She did not want to be on a ventilator again, and she did what she had to do to stay off of it. I kissed her little skinny arm, which was pale white from lack of profusion, and I said "I love you baby". She was looking at me the entire time. I stared at her as I backed out of the room and she never took her eyes off of me. We were escorted to, what we now know, is the death waiting room. I think she must have passed and just come with us to that room. She wanted out of there so bad.

We sat in that waiting room for so long, and I could hear the flatline alarm going off the entire time we were in there. I knew Kaia was in the waiting room with us and not in her body anymore. I kept telling Eric that she died, and he didn't believe it. I was shaking from head to toe. When we saw the surgeon coming toward us, we knew. They took us back in the room, and I held her. I held her good and strong and hard for 2 hours. I never got to hold her and walk around. I'd never gotten to put her head up on my shoulder. I did all the things I always wanted to do with her. I gave her a bath. I put her in some clothes. She had never gotten to wear any clothes her whole life. Her chyle fluid was leaking out of her abdomen, but I didn't care. It got all over me. All I wanted to do was go back to the time when she was happy....before we tortured her body....and just let her go naturally. I feel we were so selfish to keep her alive by the means that we did. We just wanted her to have a chance. We wanted her to live and love. I couldn't wait to bring her home and retrain her brain to know that people aren't bad. Kaia didn't like people much after her surgery. Anytime anyone other than her dad and I touched her, she would cry. She hated all the doctors and nurses. She knew they just hurt her over and over again. She looked to us to save her, and we couldn't. I would give anything to take her pain....to trade places. It seems so pointless to live and love and smile when she can't. But we are trying, because we need to celebrate her and not let this destroy us. She wouldn't want that.

When we got home from the hospital, we were devastated. I didn't want to sleep because I was so afraid of waking up. But we were so sleep deprived that eventually it came...for a few hours. At 9:16 in the morning, my phone started vibrating and vibrating, over and over and over. It was a constant vibration that i'd never seen before. I looked at my phone and it said "new text message" then "new voicemail" then "missed call" then "new text message"....over and over and over again. It was all the people that contacted me during the night....but they never came through until, all at once, at 9:16 in the morning, they all came through. Kaia was born at 9:16 in the morning. She knew that mommy and daddy stayed up night after night to watch over her and we needed our sleep. I believe that she held all of my phone calls, texts, etc so that we could sleep. She delivered them all at 9:16 to tell us that she did come home with us. She is here. It pisses me off that she is taking care of us after all she's been through. But she knew that mommies and daddies need taken care of too.

We are devastated. We miss her. We are angry at the hospital. We are still so in love with her. We see her face and hear her voice and still hear the hospital beeps of IVs and alarms. We question ever making her go through surgery in the first place. We just want her to be happy and healthy and thriving. Her little earth body couldn't do that for her. I pray that all who have passed before her will take care of her. Uncle Rick, please take her fishing. Great Grandma DeRubba, please make her some pasta and teach her some italian. Kay, please hold her for me. She loved to be held. Great Grandma Sue, please help raise her in love. Jim, please protect her and keep her around so we can meet up with her. She has now made me not fear death. I welcome the time when I can be with her again.

Kaia, my darling little lion bean burrito, you have taught mommy and daddy what love is. We never knew the extent of love until you. You taught us how to love each other too. You have made us better people. You have changed the people that we were, forever. Every little and big thing that you were, is in us. We promise to give you brothers and sisters. Because of you, we are a family. We owe you the world for what you gave us. I hope we can repay you, somehow.

All our oceans and oceans of love to you, my pretty girl.
Love, mommy and daddy

off the vent!

here's Kaia this morning when I woke up (nurse Jackie put the cute hat that auntie Jen bought on her head)


And here's Kaia now! She's catchin' flies.

Oh, she's a happy girl with no tube down her throat! We had a giggling session. She smiled and smiled!




What a great day! I mean, she woke up.....wait....I woke up this morning to Kaia still sleeping. That NEVER happens. Kaia doesn't sleep much. But she was zonked, and she slept almost the whole day! I think she was saving the energy so she could successfully come off of the vent. Let me say it again, she NEVER sleeps and she slept. It allowed me time to go get a shower, then the tests started. We had a nice break when Kate came to visit. She brought a bag of goodies from whole foods, and I think that was the healthiest food I've/we've eaten in a month. Thank you Kate! What a great surprise. The food was delicious! We got to visit for about 10 minutes or so before the next test started. Kaia had a few exams/ultrasounds/cameras in her lungs...to see if her lung function would support her. She passed all of them, so out came the tube. She's now 6 hours extubated and is still doing well. She's got a lot of secretions that need to be suctioned until she learns to cough. But for a girl who's been intubated most of her life, she's doing really well. Let's all hope and pray that her feeds stay in her belly and don't get thrown up and seep into her lungs again. she threw up last night when her tube was still in, so we now have her on zantac for her reflux issues, so hopefully she will keep it down. Unfortunately, we can't explore the reasons for her reflux because there's only one formula that she can have right now due to her chyle issue. So, we can't change her diet and eliminate dairy to cure it or anything. Once this chyle stops, she can go back to breastmilk. We were told 3 months today. I believe she will have the chest tube in for most of that time too, so she can drain that fluid, since it almost drowned her during her last extubation.

So, all in all, it's been a great day! What a great change of emotion. I went from crying because I thought we would lose her, to crying because I was so excited that she seems to have improved. I don't think we'll sleep much tonight, as we'll be sleeping with no earplugs so we can hear her cough or choke or whatever on her feeds, if she does spit them up. Getting through tonight will be nerve wracking, but we definitely both felt that today was the right day to extubate her, and I have faith that she will be okay. She told me to tell you all that she loves you and owes all of her success to God and you all!

xoxo!

family visit

Sunday was a special day for Kaia. Her Great Grandmother and Great Aunt Jodi came out to visit her, along with Pap and Gram. Kaia was still on the ventilator, which wasn't ideal for meeting a Great Grandma who's been wanting to get her hands on a great grand baby for a long long time, but at least they got to meet! Our little girl was a bit swollen still and didn't look herself, but everyone still said she was beautiful. We had a nice visit. Aunt Jodi and I finished off almost a whole big bag of popcorn (thanks for all the snacks Jackie!). Yum. Then we went to little italy (a hop away from the hospital) for a nice lunch. It was really nice having visitors! Next time, Kaia will be able to be held. Horray! Anyway, I had a couple of pictures from the day and wanted to post them. Here they are! Look at Kaia stare at her Great Aunt Jodi. So cute.

Kaia and Gram

Kaia with Great Gram

4 generations of Parker

sorry for the absence

It's been a rough rough rough weekend in the PICU here at rainbow. Three kids died, that I know of. There has been a little baby in the room next to us that was on ECMO (that's the machine kaia was on that pumped her blood for her) for a week now. He had a procedure done on him today. I saw a wooden cart come flying down the hallway and park in front of his door. When the nurses in our room saw the cart, they ran next door. All i could hear was the sound of flatlining alarms going off and mass amounts of syringes being filled with medicines...probably adrenaline. Next thing I saw were doctors leaving and machines being taken out of the room. Within 20 minutes, the room was empty. I sat down to breastpump, and I heard shrieking. I instantly knew it was the mother. I jolted up from pumping and found eric and asked who that was. He said it was some kid crying but i knew that sound could only come from a mother who had just lost her child. I was right. I said to our nurse "it sounds like a torture chamber in here today". And she said "believe it or not, that came from outside the unit." And I said "it was the mother, wasn't it." She shook her head yes. I heard her screaming, loud and clear, like it was in our room but she was way down the hall and in the waiting area outside the picu doors. I feel horrible. I feel like vomiting. I can't eat. I can't go outside. I can't leave Kaia.

Yesterday, I saw the family that was with their child a few doors down, crying out in the waiting area. I had been talking with that mother over the last several days. When i saw them out there crying, I knew they lost their child too. Today, that room is empty.

The third child was probably 15 years old. She'd been on ecmo since we've been here. Her room is empty too. The empty rooms are so eerie. I've not thought about the kids who have passed while in here until this weekend, as we were around three that had passed. It's strange to think their little souls drifted off with us next door. It's a horrible feeling that is so strange and surreal. I can't explain it, nor do i want to. I just know that I don't want to be that mother that I heard today. That would be me, if anything happens to Kaia.

So, the breathing tube never came out. We are dumbfounded. Apprehension has been a big issue of mine while in here, and I've learned to trust my gut instinct at this point. Every time I've felt some certain way when it comes to Kaia, I've been right. That first time she came off the tube, she was 3 days extubated and it was father's day.....eric and i had just started feeling comfortable going home thinking we were on the easy end of things. But that sunday, I had an anxiety attack of sorts about going home. I had not cried much in a week, but i was bawling and couldn't leave Kaia. I eventually told myself I was just being paranoid and left. 3 hours later, kaia crashed due to an arrest and had to be resuscitated. The second time they took her off the tube, I knew it wasn't the right time because something else was going on with her that nobody was paying attention to. Eric and I saw it, and we spoke up, but nobody listened. The tube came out and went back in a half hour later. We almost lost her again. The tube was supposed to come out over the weekend, but we said no. It was pushed to today and today she has had fits of heavy breathing of 80-120 breaths a minute for hours and hours. FINALLY, someone else was in here too to see it. We had been seeing this for over a week and nobody listened. Today, they listened. They now see that she does have a third (and hopefully final) issue going on with her that needs discovered before she can progress to getting out of here. Her heart looks fine at this point. That leaking of the chyle fluid from her thorasic duct has lessened (which made them want to take her off the tube again because that fluid was "the issue last extubation"). But there is a third thing now. I won't go into what that might be because there are so many options they gave us. But, we will find out. I know it.

Let me back up on this chyle fluid. I mentioned in my last post that there is a duct that they said they can nick during surgery and it will leak fluid. Apparently, this has happened to Kaia. It is not super common, but it isn't super unusual either. Last time they took the tube out of her throat, she grunted the whole time and had a really hard time breathing on her own. They re-intubated her and then x-rayed her and found the chyle fluid all around her lungs. Now, she gets x-rays every day. She always has had fluid, but they drained 80 mls out at that point and the tube is still draining (now at a slower pace), for a total of over 250 MLs so far. I can't go into the chyle issue too much, as I haven't had much time to research it. But, the thorasic duct can be damaged in surgery. In infants, it's so small that you can't even tell where it is, thus it being easy to damage during surgery. It can be damaged due to moving tissue around during surgery or nicking it with a surgical tool or even just the trauma from surgery itself. Once damaged, it cannot heal unless you remove all fats from the diet. So, kaia is on a strict diet (no breastmilk for now) of no undigested fats. all the fats in her formula are pre-digested. Don't ask me how...i really don't want to know. But, it's really slowed the leak. The hope is that the leak will heal on its own. Most of the time, it does. Some of the time, this diet has to be followed forever and can be fatal. Let's hope that she (for once) falls in the "most of the time" category.

That's all I have for today. We are scheduled round the clock, day in and day out (an nights too) for procedures, tests, doctors talks, x-rays, etc daily. I'm really sorry for all I haven't gotten back to. We barely find time to eat with all that we have going on with her on a day to day basis. We rarely shower, which is sick, but it takes a back seat to kaia's needs. I really hope and pray it slows down. We usually get to sleep from midnight until 4am, when her day starts with the daily x-ray and then her normal tests and procedures that she gets each morning. I'd say we average 4 hours of sleep per night. The rest of the day is spent pumping, trying to find time to eat, talking to docs and updating this blog. Day in and day out...that is literally all we do. I can't believe June is almost over and we still haven't done a single thing outside. I miss everyone and everything! I miss our home. I miss the lake. I miss our friends. I miss cooking (and eating healthy food!). I miss my cats (sometimes). But, most of all, I miss holding our daughter and hope that one day, we can get her to see the outside world.

it just gets worse

The breathing tube came out yesterday for about a half hour before it went back in. It was hard to get it back in, as her throat has had it shoved in there three times so far. It took three more tries to get it in this time. Now I see blood in the tube. She was grunting the whole time it was out, a sign of distress in children. She turned pale white and was breathing so hard. That made them put it back in. An x-ray showed a bunch of fluid surrounding her lungs. We are not sure if the fluid game after they took the tube out or before. But it squished her lungs and made it hard to breath. They put an emergency chest tube in (put a hole in the side of her to drain the fluid...i'd talked about the possibility of this in a previous post). The chest tube has drained over 100 ml of fluid so far and it keeps coming. Her body is producing it and leaking it around her lung walls.

There are 3 different things that can cause this to happen. I forget the first two because they don't think those are it. The third think is a duct that they can nick during surgery that cannot be fixed. This is the worst case scenario.

I didn't post last night because I couldn't see straight. I've never cried so hard in my life. I wanted to curl up and die on the floor. I couldn't stand or sit or walk or breath. This nightmare is never ending. I don't want to, nor know how to do this anymore. I have nothing left. Every day is one step forward and three steps back. It looks like she will not make it through. They keep telling me to not think that yet. I'm not sure how to think otherwise. We need a miracle now. That is what can save her. I do know that I don't know how to live past this.

nerves nerves nerves

are getting to me! i'm so nervous for her tube to come out. It's supposed to happen today. Little Kaia has so many issues, that nobody is sure if the tube is helping her or hurting her. She has congestive heart failure, and nobody knows what's causing it. Her lung keeps opening up and then recollapsing. It's collapsed again...not totally, but it is somewhat. They might have to move the second surgery up a bit to compensate for a narrowing of a vessel that is not allowing blood to flow freely. Her heart is working so fast and hard that it sometimes just slows way down and her breathing goes way up. These things could fix themselves once off the breathing tube...or they could get worse. As one doc said it today "this is where the 'art' part of medicine takes over for 'science'....because we just don't have difinitive answers". GREAT! Thanks for that pick me up, doc. I've decided to not worry about it. She is in God's hands, and there is nothing I can do to change her fate. All I can do is love her to pieces and soak in as much Kaia as I can get each day. It's kind of hard when she sleeps all day and is up all night when mommy sleeps. But...

Anyway, I really came on here (not to give an update for the day yet...we are not ready) to thank a very special couple of everyday angels. Eric ran home to feed cats and water plants and pick up mail. I was pleasantly surprised at a package. I mean, who doesn't love packages? I opened it to find a people mag (my fave!) a national enquirer (eric's new fave!) and a book of crossword puzzles (my new pastime as I'm pumping every 2.5 hours). Included in that package was a beautiful card with a generous donation that we will put in our newfound "kaia fund" (a little fund of money we're setting aside for her ever growing mound of billions and billions of hospital bills). It really is unfortunate to be dealing with this tragedy, only to be faced with endless bills coming in every day. But to see someone support us like that made me break down and cry. I was so touched. I'm not sure if those peeps want called out or not, but too bad! So, Shannon, Jenn, Becky, Brian & Kim....your thoughtfulness was a huge light in our day yesterday. I don't know how to thank you properly, other than to publicly thank you and say that I hope you get repaid tenfold. I believe in karma, and you gots some good stuff coming your way! Much love to all of you. We are blessed!

I'll be back with a tube update later....if I'm awake. We have barely slept the last few days (okay....month....but the last few days have been especially bad). So, if I'm sleeping then i'll do it asap tomorrow am!

sleepy gal!

Look at this kid.


She's been like this all day. Sleeping away! Finally. She was awake for like 24 hours straight. Eric was up with her all night until about 6:30 am, when his body got too tired to watch over her anymore. She was up the entire time.

Let me just tell you a little something about miss Kaia. We took our nightly walk outside for about an hour (something i like to do to keep me sane through this) and came back to our little girl watching "madagascar".
Look at this:



I clearly disapprove. But....


Now, she wasn't just watching the movie, she was TOTALLY ENTHRALLED with it. Like.....staring intently and watching every move the animals made. the nurse put it on for her (there goes my "no tv" rule, but rules go out the window when necessary, as moms know) and she LOVED it. I'm sure she's not a tv addict or anything, but she was definitely entertained. How entertained? Well, I actually thought that she might have brain damage because i couldn't get her to look away. All i could think was "is this autism?". But, she just liked it. I put my head in front of the tv so she couldn't see and she immediately started crying. But, we turned the tv so she couldn't see it and got her attention on us again. She was a super happy child last night. It was so good to see! It made me feel great and more positive.

Now for more good news: her lung is open again. I am not getting my hopes up this time, as it's happened before. But, she seems much happier which tells me she's feeling better inside, which tells me that things inside are getting better. And here's more good news, they think she's coming off the breathing tube again tomorrow. I'm very excited for this and very scared at the same time. I mean, i hate her on it. BUT, it does protect her airway and keeps her from aspirating again and potentially having an arrest again. She can't live on it forever though, so we just have to have faith in her to be able to do this and not relapse! Please put the energy and focus on this over the next few days! We feel it over here! I promise you! And I can't wait to introduce everyone to the fruit of all of their prayers and positive energy. she's a beautiful little peach.

There's no more updates for today. But I do want to share the cutest thing ever. Kaia LOVES to suck, but she can't fit a pacifier into her mouth with the breathing tube in. So, we put it at her lips and she licks it like a puppy. It's so adorable. And, lately, I've been scrubbing my finger and letting her suck on it. She LOVES it. She stares at me and stares at me the whole time as she sucks on it. It's as close as I can come to breastfeeding. I have to say that I've heard many moms complain about breastfeeding and the time it takes and all that. But I wish those women knew how lucky they are to have a choice! I produce mass amounts of milk and have nobody to feed it to. Well...she gets it but at 7ml/hour. I will be dumping gallons of it down the drain unless they take my donation (yes, you can donate breastmilk). Anyway, back to the subject. Kaia loves to suck on my finger and the look she gives me melts me and makes me realize that, though our bonding might be unconventional, it is still there. It is what I live for. It's the most important thing in the world to me. And I thank her for allowing those precious moments with me when all else around her is so irritating, stressful and painful. Here's a pic of her sucking my finger (she has a rash from the arrest on sunday night...ignore it. she's less puffy, rashless and she pulled that IV out of her neck cuz she hated it. so, she looks better now, but the pic is still adorable).

another day

well, i'm posting early tonight because nothing is going to change today. Nothing was weened off of her. Nothing was turned down. Nothing has changed. She hasn't slept a wink today, and she finally just dozed off. I had to turn away the respiratory therapist so Kaia could sleep. She'll be back in 20 minutes. 20 minutes? That's all they're letting her sleep? I've successfully kept the nurses from giving her morphine all day. She's doing fine on tylenol and some tweaks in her position and clean diapers (she HATES soiled diapers...will NOT tolerate!). She had an echo on her heart today that showed a narrowing of a vessel that is not allowing a steady flow of blood to her lungs. They're gonna watch it closely to see if it's a problem. Let's hope it's not, because we can't do another surgery right now. Heck no.

I had a meeting with all of her doctors today. There were 7 of them from all areas of the spectrum. I voiced all of our concerns about the excessive X-rays (like 3/day) and they are going to do one big one each day instead of all these separate ones. She's had over 100 at this point. I'm worried about radiation in her little body. I put the nix on morphine and other heavy hitting drugs that she doesn't need. And I requested more and better communication. they were all super helpful and supportive of our wishes.

Looks like we will be here for several more weeks though. We were originally supposed to be out probably today, but by friday. Now we are here for way longer since her arrest the other night. Please pray for a speedy recovery so we can cut our stay down to a week or two! I can't stand it here. It's so depressing.

thank you all for all the supportive comments and for reading. I am still amazed by how many people care what happens to her, when not many of you have ever met her. She's a precious little wonder, and I am amazed by her strength and tolerance.

at a loss

Kaia's lung collapsed again last night. It just won't stay open. Nobody knows why/how/etc. I'm feel defeated. I want to be in hibernation until this is all over. How are we supposed to take anymore? She can't get off the breathing tube until it opens and stays open for good. We thought yesterday was that day, but then it collapsed again. She's making no improvements right now. It's almost like she's given up. You can see it in her face. She looks defeated too. Her eyes look so empty. And it makes it really hard to look at her without losing it. I can't take this anymore. I'm getting angry at God, and that is not right. But, if he's in control, then why and how could you allow this to happen to her? Please help her. Can't anyone just fix her?

little sprout

that's kaia's name for the day. So far, she's got: butterfly, little bean, little lion, lady bug and little sprout. I make up a new one every few days. She's resting right now...something she hasn't gotten much of due to the number of doctors testing everything on her person and respiratory therapists working to open her collapsed lung again. I swear, every time she is just falling asleep, they have to do her vibes again. Vibes are the respiratory therapists coming in, turning up her tidal volume on the resp. machine and basically massaging her chest with a vibrator wand and then suctioning out her lungs. Kaia likes all the parts except the suctioning. It makes her feel like she's not breathing and she freaks out. Then we have a crying fit that takes time to settle down. then she'll settle and they have to do it again. Poor babes hasn't slept all day, it seems.

She's had a helluva time peeing today too. She's very swollen again...just when she was back to her normal size she had to go and aspirate, almost die and then swell up again. She's now on lasix again, which helps her pee and shed that water weight. It also makes her shed her electrolytes, so they then have to pump her with extra potassium and some other junk.

So, she's had a collapsed lung again. That right one just doesn't want to stay open. But they were able to get it back open today, which is great. It's been collapsed for days now. But she does have two pockets of fluid at the bottom of each lung that they are watching. Those have to go down or they will put drains through her side to drain them. Hopefully that won't happen! I won't let it.

They are watching her labs to make sure her kidneys are still working. She's on so many drugs and isn't peeing, so they were worried that her kidneys might start to fail. Her liver is swollen right now, but that is because of her heart failure sunday night/monday morning. It should go down once the lasix kicks in more.

She has a bladder infection, which is not helping her peeing problem. She's on antibiotics for that. I've also heard "UTI", so i think it spread to her urinary tract. Hmmm, what else? I think that's enough for today. I'm whooped and had a huge bout of crying today. So, I'm feeling very emptied right now of emotion and I have very tired eyes.

Eric brought up a good point today that, though we aren't able to be home and do normal parenting with a healthy child (which, i hope that everyone with healthy children knows how lucky they are), we are learning how we have to be parents by monitoring her so closely while in the hospital. Our job right now, as parents, is to be the eyes that are the only ones on her 24/7 and report what we see. After noticing some inconsistencies with her care and some questionable actions that could have potentially saved her from aspirating the other night, we have to know her the best that we can and know her reactions to certain things and not be scared to report them. That is our role. We are being normal parents...and this is our normal. I love him.

Love you all! xoxo

something is wrong with the universe

I am pissed off at the world today. Hasn't the universe dealt our baby girl enough already? Yesterday, I didn't post because we had a pretty horrible day here. Kaia was throwing up all her feeds. She was fussy all day and just miserable. We stayed at the hospital till 11:45 because i just didn't feel right leaving her. Against my better judgement, I did leave. At 2:34 am, we got a phone call that Kaia had crashed. She stopped breathing and her heartrate dropped. They had to resuscitate her. It took 20 minutes to bring her back to life. She almost didn't make it. She's stable now, but is back on the breathing tube. We were supposed to get out of ICU today. Instead, we just extended our stay for God knows how long. Their best guess at this point is pneumonia. They checked her heart and the function looks good. They think she might have aspirated her feeds into her lungs and got an infection. Nothing is 100% right now....including her brain function. Since she essentially died, the oxygen wasn't getting to her brain. So, we will have to wait days to see if she suffers from any brain damage from the incident. We didn't sleep last night and are pretty destroyed. We feel like giving up. It's just been so much and so emotional. We really don't know how we are going to get through this. Our spirits are really down. It's hard to be upbeat when you see your baby lying like a vegetable in a hospital bed and back on the breathing tubes. When the hell is my chance to have a normal experience as a mother? When do i get to hold my baby whenever I want to? When can she see outside? or our house? or....anything, for that matter? Why does this keep happening where we get our hopes up and then almost lose her again and again? I hate the universe today. It's cruel and unfair. She's so tiny and has been through so much! She's gotten so much blood and shed so much too. She has bruises all over her body from them trying to fit central IV lines into her tiny veins and missing. She's got vomit all through her hair from them having to pump her stomach last night. We love her so much and I really have no idea how eric drove us here last night as we were shaking violently from head to toe, thinking she was going to die before we got here. This is NOT HOW IT'S SUPPOSED TO BE! I just feel like swearing and throwing things!
and to top it off, my mother finds out if her cancer is stage 3 or stage 4 today.
Please pray everyone. Please pray for my family, their health, and that we keep it together when it all looks so bleak. Thank you.

slow flow

Hello all. We spent another lovely day here at Rainbow with Kaia. I held her for 3 hours today. She was super fussy (before i held her) and the nurse thought she needed more morphine. She doesn't need it for pain anymore, but she's been showing signs of withdrawal (very common when they've been on it for over a week), including unconsoleable fits of crying/refusing pacifier/hot sweats/etc. But I asked that i hold her instead of them giving her another dose of the junk. And she was perfectly peaceful. I'm convinced that she's weened off the stuff and just needs held more. The nurses don't hold her. Anyway, she's been morphine free all day now and is just fine. We are trying to feed her out of a "bottle", which is actually a syringe with a nipple attached. It flows slower than a bottle so she has to work a little harder, which will get her ready for the breast. This has been a very slow going thing for her to pick up. She hates eating (wonder where she gets that...). She tastes milk and tries to spit it out. She loves her pacifier and i think she's wondering why the big pacifier is squirting in her mouth. Anyway, we can't leave this hospital until she learns to eat, which is looking like it could take a week. Let's switch up the prayers to "Dear God, please let Kaia like mom's milk and drink the heck out of it!". :)
So, cheers to the bottle, everyone!

breathe easy

Kaia girl came off her respirator this morning! yay!!!! She sounds like a little roaring lion. Her poor little voice box is shot from the tube, and she has lots of phlem. Normal stuff. Coming off the vent means we get to hold her again! She still has tons of wires and stuff, so, we can't pic her up, but we can hold her. You can see that she is more blue than she was pre-op. This is because of the way they had to reshape her heart to get blood to her body. She is only 75-85% oxygenated, which makes her blue because unoxygenated blood is blue, not red. After the second surgery, she will be at 85-90% and after her final surgery, she will be at 95%....so, in 3.5 years, her color will be back to the more olive tones she had in her earlier baby pics.
She is getting the IV tube pulled out of her belly button, as I type. And she is NOT getting that evil PICC line that they kept messing up. The originally had to give it to her because two of the meds she was on could not go through the same line. But she is off both of them today. So, take THAT you evil PICC lady! Kaia didn't like you and neither did we. (She really was a witch, so i don't feel bad disliking her). She will be out of ICU by the end of the weekend (which means monday). Stay tuned for further details. I think that is all she will have done today. Horray!