Happy birthday baby girl

Dear Kaia,
I miss you! I love you! I want to make those things clear. Papa and I just laid in bed at 9:16 and remembered the moment when you entered our lives. We were so scared, but had no idea the real fear was to come when your heart started to stop. Now it's two years later, and look how much you've grown us! Papa, brother Finny and I are going to the beach today to celebrate you, as a family. You've given us, us. We're a close-knit family of 4 with so much love because of you. I hope to see you there at the beach. I got you cupcakes and pink candles. Are you able to have one? I'll save you the pink cupcake. I cried picking out the candles. How many people have to buy candles for their child's birthday, when their child isn't on earth with them? It breaks my heart that I cannot hug you. It hurts bad. I know you are okay and you are free and happy and that your work here was done. But I will never stop being selfish about wanting you here. I will always miss you. As your mother, you, my baby, will always come first. You are the head of this family, and your little brother is your right hand man. He's kind of taken over the house right now. He kissed your picture this morning when we said happy birthday to you. He's such a sweet soul, and I know you know that. I see him looking at you and laughing. You're a good big sister. Today is your day. Nobody can steal that from you. Do what you please. And if what you please is to visit mommy and family today, then we would love to see you. All my love and adoration and thanks....from the depths of my ever growing heart.

Love, mommy

Another giveaway. I LOVE this one!

Just in time for Finn's 3rd week birthday. :) I'm a huge fan of http://www.etsystalker.com. They feature some amazing artisans that I would never have found otherwise. They're all people like you and me, trying to sell their wares on etsy. One day, I grabbed my courage and asked her if she would consider featuring me. She agreed! And today, there's an interview and a giveaway right here (click here).
The winner will be chosen on September 19th, so be sure to leave your comment before then to be eligible to win.

I'm really proud of this one, if you couldn't tell. Be sure to check it out and follow her page. There are giveaways all the time, and the art is always amazing!

Finn updates to come soon....as soon as I can figure out how to get video onto the computer. ;)

Dear Kaia, Today is your one-year angelversary

Two days ago, I was driving your little brother or sister to St. John's for his/her 33 week check-up. As I was nearing the hospital, I heard an ambulance siren. I looked in my rearview, and there were the lights. An ambulance was going to the same hospital that I was. This is the hospital where you were born. All of a sudden, this wave of emotion came over me. The last time I was here and heard ambulance sirens, it was your ambulance transferring you to Rainbow Babies. The hospital wouldn't let me ride in the same ambulance with you because I was a "different patient" and we were going to two different units of the hospital. I laid in that ambulance and strained to watch your ambulance the entire way. Our ambulances rode side by side the entire way. Twenty minutes felt like a lifetime. I couldn't stand to be separated from you like that. It wasn't fair. I cried and cried, only to get there to find you laughing and giggling.

It was midnight, and I still couldn't sleep. So many nights with no sleep, and I was so tired. But I could never sleep when I knew something was wrong with your heart. It wasn't until the next morning that they told us you had Hypoplastic Left Heart Syndrome. The whole next week we spent with you in the NICU. You smiled every day and would stare at us the entire day, until your eyes got so tired, they had to rest. June 9th, you laughed and giggled all the way to surgery. You always made mommy feel okay about what you were about to face. Your attitude was so light. I lost family members trying to keep you that way that day of your surgery. And I don't regret it. Your happiness and lightness was and is my only concern.

It wasn't until two days before you passed onto your new life, that I saw you laugh and giggle again. The pain was too big for you to laugh through. I understand. 

On this day, one year ago, at 10:02 pm, you looked me in the eyes and told me you were leaving. I didn't believe you. I wish I had believed you because I would never have left that room. I want you to know it's one of my biggest regrets. The next time I saw you, you were gone. I held your body and screamed that it wasn't so. I wouldn't let you go until you were cold and stiff. To this day, I can't watch the videos of you yet. Someday I will be able to. I hope. This doesn't mean I don't love you. It means I'm a human who longs to be able to hold you and watch you grow as a human. Instead, I watch you grow as a soul....a divine spirit that envelopes our family and continues to reach families across the world. I talk to you and you use my hands to do the work that requires hands, and you take care of the rest. This is your first angelversary, and I remember you for all that you were, but also, for all that you continue to be as you grow in ways that are larger than inches.

I want you to know that I see you. When I think of you, I see you laughing and picture you playing with butterflies. I know you. I know your soul was/is pure and true and good. You are very much around. I feel you. I know you show yourself to me in more ways than I actually recognize. But you are everywhere and in everything. There's rarely a day that goes by that I don't tell your story. Just yesterday, I was at the store when a woman asked if this is my first baby. When I said "no", she asked (just like everyone does) how old you are. My answer is "ageless", and then I tell your story. I've gotten it down to a short version, so as not to drown people in sorrow. I don't believe your story should be one of sorrow, even though you make me cry often. I want the light that is you to always come through. After I told your story, the woman said, "I have goosebumps. That is so amazing." And I say, "I know". Because I do know. You ARE amazing. Someone once told me that goosebumps are a sign that those who have passed are right next to you. Each time I tell your story, the person says "I have goosebumps." I take that as one sure sign that you are there, telling your story through me.

As the days go by, you don't diminish. You seem to grow bigger and greater with every person I meet and every woman, man and child that has come into our new path. Your story has raised a good chunk of money for research, so far. You have changed lives emotionally, physically and mentally. I know how proud I am to call you "daughter". And, even though I will never understand fully why you had to go, I do see how powerful and completing your life is since you have moved on. Maybe it was the only way to finish your life's work.

As long as I live, I will never stop living with you and beside you. You guide us in your light. And we know God will take good care of you until we can be fully reunited again. We are a family of four, and we are on a beautiful path, of which you built.

All my love,
Mommy

Kaia's birthday month donations!

Hello all! It's May. And May is the month our beautiful daughter was born. To honor her life during her birthday month, I will be donating (a minimum of $10 from each sale I make) to the Children's Heart Foundation. If you would like to donate a bit of spare change or whatever you can afford, in honor of her and all the other children who have passed away from CHDs or live with them daily, please visit The Children's Heart Foundation, and click the donate link. I would also like to mention It's My Heart, as well, who also need donations. To donate to It's My Heart, please go to It's My Heart's website and click the donate link.

Mother's Day

This mother's day is a rough one. I will be celebrating it with my husband, and it feels so strange. It's almost been one year since Kaia's birth and I still cry every day. I still can't listen to certain songs. Sometimes when our baby kicks inside of me, I think of her...of stroking her hair or her soft soft skin....of her beautiful face and how she would look at me. It's so hard to let go of the guilt. We should have taken her to cleveland clinic. We should never have let those doctors and nurses touch her anymore after butchering her surgery and then never watching after her like they should have. I want to talk to a lawyer, but I don't have the strength to relive it all just yet.

I'm honored to have been given a second chance at a child. I (we) worry about how much this one will look like her, and if we'll be able to handle that emotionally. Will I be able to attach myself to him/her or will I stay distant because I don't ever want to feel that loss again? I already feel attached, and it's scary. Once you lose a child, you feel that it's so easy to lose a child and that it could happen again. I can't explain it properly.

When you're pregnant, so many people ask you if this is your first child. I know they mean well and to make conversation. I'm happy to talk about my daughter, but sometimes it's just not the right time or the right person to talk about it to. I find myself, all day, every day, telling the story of how I lost my precious girl to an ugly defect. Soon, I'm crying with a total stranger. And the conversation always ends there, with an "I'm sorry" and then a look of pity.

On this mother's day, I make a promise to myself and my family, that my children will always be the most important people in my life. I will always fight for them. I will always protect them. I will always be here for them. I will never turn my back on them or be petty with them. I will never cause unnecessary drama in their lives. I will never make myself more important than them. They will always come before all others. I will let them feel and be and do whatever it is they are called to. I will love them unconditionally, forever, with no boundaries. And I will forever be their mother, even if not all of them are here with me on earth.

Happy Mother's day to all of the great mothers out there.

Perfect circle

A picture of Kaia and her urn sit on our mantle. We had it blown to look like the earth, since that's what her name meant. We had a pinch of sand from the spot we got married, thrown into it. Thanks to Michael from the Glass Bubble in Ohio City for blowing a few for us to choose from!

The swirls go on and on, there is no ending point....just like a life.

A huge heartfelt thank you

When I was working at my last company, I didn't feel fulfilled. I was happy with my job, but something was missing. It bothered me daily that what I was doing was not helping people in any way. I was doing nothing for others. I was merely using my creativity to help a team pull in ad dollars.

After three and a half months off for Kaia's birth, illness and bereavement, I went back to work for only one week. During that week, I fought with my husband over the stupidest things. We hadn't fought in probably 6 months, but we fought that whole week. I realized that then/now, more than ever, I needed to do something to help people in some way shape or form. I had no idea how to do that artistically. All I know how to do is art. I've never been good at anything else. In realizing my job was the root of the tension, I looked up to God and said "I need to find something else to do with my life. Please help me." Then I asked Kaia to help lead mommy, as well. The very next day, I was laid-off. I took it as a sign.

After spending a couple of days sulking, I got a call from my sister-in-law about a lady who was interested in selling my fabric art. At this point, I'd only done one piece for Kaia's nursery. That's all I had to show this woman in our meeting, and it was enough for her to say "let's go for it".

I spent the next month creating and wondering "will this work". I still needed to know that this new career venture would be helping others in some way. With each piece I sold, I got to tell Kaia's story. Each piece was spreading awareness of CHD. People kept saying "I've never heard of that" or "I've never been aware of that". Word spread through facebook and CHD communities, and soon I was being blessed with being able to create these pieces for kids with CHDs, for fund-raisers for CHD and for new families just finding out about CHDs. I've received letters and emails of how Kaia's story is still helping families. How all of this is inspiring parents and loved ones. This is the greatest blessing anyone can give us.

I think a parent's greatest fear is that their child will be forgotten after they pass. And you all show me on a daily basis that her life is still working wonders. She's still inspiring people, and she's still here glowing like a bright light.

As long as this can continue, I will be a part of it. This business is what I'd been missing in my career. I never thought I could help people through my own story....through Kaia's story....through my art. But it's clearly evident that I can. I feel this is one of the most important things I've ever had the chance to do, and I thank you all, from the bottom of my heart, for giving us this chance. Each person made aware of CHD is another step toward finding a cure or a prevention. Each dollar donated can be a life saved. Every little bit helps. I firmly believe that maybe one person can't make a huge difference alone, but a few people working together can change the world. It is you who is changing this world.

Thank you for remembering her, for supporting us and for helping future CHD families. Each piece of Little Lion Designs artwork will be shipped with a CHD fact sheet and what you can do to further help, if you choose.

Many blessings to all of you. 10 fold....it will come back. Thank you again!

this is CHD awareness week

I am ashamed at myself for not making the time to make this known on my blog sooner. It might be national healthy heart month, but this exact week (from the 7th-14th) is CHD awareness week.
There are many angels that have been lost, but they are now up in heaven together without the limits of the human body. My daughter has taught me that there is no room for anything but love and that which comes from a place of love, in our lives. She has taught me how to live, what I had to remove in order to live this way....the guilt, the negativity, the nay-sayers.... I am now surrounded in love. We are surrounded in love and only love. And the only person who could have done that for us was our own child.
We love you, Kaia Belle Urban!
Please take a moment to honor our angels by clicking here.

If you are pregnant or plan to become pregnant, I urge you to watch this video. This simple newborn screening could save your child's life. We almost went home with Kaia because the doctors thought she was healthy. If it wasn't for my c-section, this would have been our reality too.
click here & hopefully you can view this. It's on facebook.

Here are the solid facts:
CHD is an anomaly of the heart that is present at birth. CHD’s cause one or more portions of the heart to develop abnormally. At least 35 distinct forms recognized.
(There is no known cause for CHD, although genetics is the number one suspect)

CHD is the # 1 birth defect and is the leading cause of birth-defect related deaths…
(While it is the most common birth defect, it is the least publicized.)

CHD strikes children without regard to economic level, ethnic origin, sex, geographic location or religious beliefs.

40,000 infants are born with CHD each year in the U.S.
(Still, newborns are not screened for CHD’s.)

Some babies may be diagnosed before birth or at birth, some not until days, weeks, months or even years later. Sadly, too many are not diagnosed until after death.

Undiagnosed CHD’s and Childhood Onset Heart Disease cause many cases of Sudden Cardiac Death in young athletes.
(Despite these statistics, teen-aged athletes are not routinely screened for CHD’s.)

There are 1.2 million children and adults with CHD alive today
(CHD affects not only patients, but also entire families.)

The Chosen Mothers

The Chosen Mothers
By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.
Did you ever wonder how mothers of children with life threatening illnesses are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."

Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."

"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."
"But, does she have patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy."

"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."

"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

How you can help me

this was written by a woman who lost her children and husband in a house explosion. But I feel the words are so poignant and true for any parent who's lost a child. I see this image in my mind every day of my life.

_________________________________________________________

"~Please talk about my loved one, even though she is gone. It is more comforting to cry than to pretend that she never existed. I need to talk about her, and I need to do it over and over.

~Be patient with my agitation. Nothing feels secure in my world. Get comfortable with my crying. Sadness hits me in waves, and I never know when my tears may flow. Just sit with me in silence and hold my hand.

~Don't abandon me with the excuse that you don't want to upset me. You can't catch my grief. If you don't know what to say, just come over, give me a hug or touch my arm, and gently say, "I'm sorry." You can even say, "I just don't know what to say, but I care, and want you to know that."

~Just because I look good does not mean that I feel good. Ask me how I feel only if you really have time to find out.

~I am not strong. I'm just numb. When you tell me I am strong, I feel that you don't see me.

~I will not recover. This is not a cold or the flu. I'm not sick. I'm grieving and that's different. My grieving may only begin 6 months after my loved one's death. Don't think that I will be over it in a year. For I am not only grieving her death, but also the person I was when I was with her, the life that we shared, the plans we had for watching our children and grandchildren grow, the places we will never get to go together, and the hopes and dreams that will never come true. My whole world has crumbled and I will never be the same.

~I will not always be grieving as intensely, but I will never forget my loved one and rather than recover, I want to incorporate her life and love into the rest of my life. She is a part of me and always will be, and sometimes I will remember her with joy and other times with a tear. Both are okay.

~I don't have to accept the death. Yes, I have to understand that it has happened and it is real, but there are some things in life that are just not acceptable.

~When you tell me what I should be doing, then I feel even more lost and alone. I feel badly enough that my loved one is gone, so please don't make it worse by telling me I'm not doing this right.

~Please don't tell me I can have another baby. What makes you think people are replaceable? They aren't. Whoever comes after will always be someone different.

~I don't even understand what you mean when you say, "You've got to get on with your life." My life is going on, I've been forced to take on many new responsibilities and roles. It may not look the way you think it should. This will take time and I will never be my old self again. So please, just love me as I am today, and know that with your love and support, the joy will slowly return to my life. But I will never forget and there will always be times that I cry.

~I need to know that you care about me. I need to feel your touch, your hugs. I need you just to be with me, and I need to be with you. I need to know you believe in me and in my ability to get through my grief in my own way, and in my own time.

~Please don't say, "Call me if you need anything." I'll never call you because I have no idea what I need. Trying to figure out what you could do for me takes more energy than I have. So, in advance, let me give you some ideas:

(a) Bring food or a movie over to watch together.
(b) Send me a card on special holidays, her birthday, and the anniversary of her death, and be sure to mention her name. You can't make me cry. The tears are here and I will love you for giving me the opportunity to shed them because someone cared enough about me to reach out on this difficult day.
(c) Ask me more than once to join you at a movie or lunch or dinner. I may so no at first or even for a while, but please don't give up on me because somewhere down the line, I may be ready, and if you've given up then I really will be alone.
(d) Understand how difficult it is for me to be surrounded by children, to go home alone, to feel out of place in the same situations where I used to feel so comfortable.

~Please don't judge me now - or think that I'm behaving strangely.
Remember I'm grieving. I may even be in shock. I am afraid. I may feel deep rage. I may even feel guilty. But above all, I hurt. I'm experiencing a pain unlike any I've ever felt before and one that can't be imagined by anyone who has not walked in my shoes.

~Don't worry if you think I'm getting better and then suddenly I seem to slip backward. Grief makes me behave this way at times. And please don't tell me you know how I feel, or that it's time for me to get on with my life. What I need now is time to grieve.

~Most of all thank you for being my friend. Thank you for your patience. Thank you for caring. Thank you for helping, for understanding. Thank you for praying for me.

And remember in the days or years ahead, after your loss - when you need me as I have needed you - I will understand. And then I will come and be with you."

Kaia made it into another video

Our dear daughter made it into another CHD awareness video. I strongly urge everyone to watch this video. It not only has a bunch of people with CHDs and angels who passed from a CHD, but it also has their feelings and the parents of these kids feelings. One woman said exactly how I felt with Kaia. It's 4:37 minutes/seconds in. I too remember holding Kaia's warm dead body until it got colder and colder. Only, instead of lowering the casket (which she talks about), for me it was going to the funeral home and picking up her ashes. To be eerily aware that what once was a soft and very much alive being inside my belly, was now a bag of crunching pieces of bone and flesh....so much tinier than I'd expected. This woman's words brought me right back. I fight daily to break through the pain. It's a never-ending battle that I will live with until I die. A battle that I lost part of my family over. A battle that I got closer to the rest of my family over. A battle that I never wanted to fight.
Kaia is 7:15 minutes/seconds in. The video was created by a wonderful woman named Jessica who lives with her CHD. She is also featured in the video, which is alphabetical order. Please watch and donate to one of the mentioned organizations at the end, if you find it in your full hearts.
Please click here to see video.

babies!

I recently found this blog, which I want to share with you all. A wonderful heart mom & CHD warrior for awareness, named Kelly, started it in honor of her little girl, Chloe. Chloe was born with a rare CHD called Taussig-Bing which wasn't discovered until 9 hours after she was born. Kelly's intuition & a Pulse Oximetry Screening (not standard on newborns) confirmed her CHD. She's fighting to make the Pulse OX screenings mandatory in her home state. This could detect CHDs in newborns BEFORE they go home. Many babies go home with their CHD undetected and the problem worsens, possibly leading to death. Her blog is choc full of info on CHD, and she has a page of heart babies, including Kaia.
Click here!

Congenital heart defects are the #1 birth defect. This year, nearly 40,000 children will be born with one. Kaia was my baby, but yours could be next. Yet, CHD still has very little research and funding. It's up to us to change that. The only way to prevent this defect is by knowing the causes of it.

It's really hard to fight for awareness once you've lost your heart baby. But we have to do it for our future children and yours!

Behind the scenes

Please watch this trailer.

About the film
Michel Ilbawi, M.D., leads the pediatric heart surgical team at The Heart Institute for Children. Headquartered at Hope Children’s Hospital in Oak Lawn, Illinois, they perform over 400 operations and care for more than 3,500 children with heart defects each year. With over 25 years experience as a pediatric heart surgeon and more than 20,000 surgeries performed, Dr. Ilbawi is nothing short of a miracle-worker to the families whose children he treats daily.


The documentary film, Hearts of Hope, is a once-in-a-lifetime, behind the scenes look at this amazing doctor, his dedicated staff and the families of children they fight to save everyday. In the delicate realm of pediatric heart surgery, sometimes hope is all you have. Hearts of Hope unveils a world of courage, strength and the spirit to survive, at any age. Go to the website.

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

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