Coping with surgery part 2

OK, Here's the 2nd half of what I did to cope with my daughter's impending surgery. The list goes on and on :) Miss part one? Find it here: 

Coping with Surgery Part 1

My sister in law, the hairstylist I mentioned before did a fundraiser for my cause & we organized red streaks in our hair in February.

I wanted a way to bring awareness to CHD with something I could wear every day the month of February. I created these CHD shoes to wear everyday! And for Heart awareness day I brought my A game!

    

I wanted my daughter to know she was loved and many people were thinking of her while in the hospital. So I decided to pick certain people and family members to create a one of a kind 6x6 square of fabric that we would see together as a quilt for her. THIS WAS AMAZING! I bawled like a baby when it was done, so beautiful- meaningful. I was blessed with another heart mom who was able to create this amazing quilt.

Next up, I told ya, I like to be busy, is my book I wrote for her. I met with the child life specialists to see exactly what would happen to her. From there, I decided what I wanted her to know and what I thought was appropriate.  This took a ton of time and energy. I illustrated it and put many significant clues in the illustrations as to it being for her. It was wonderful. I published it through my school's Student Treasure program.

I wanted to give her something special for her heart day. I searched for a beautiful, real heart ring and presented it her the morning we left for the hospital. In addition to the ring, I wanted her to have dolly like her. So I found this FB site, The Cutest Dolls Ever, and I picked the doll for my daughter. From her hair and eyes to her clothes and scar. The doll is beautiful.

   

Before going to the hospital I wanted to have a Suitcase filled with new things needed- button jammies, movies, slippers, ice pack, leggings, photo album, journal, and other little stuff.

I prepared stiff for a glow party at the hospital. We invited 2 family members (all that was allowed in the room, but they rotated) and gave the nurse some stuff. Fun, fun!

Throughout the months preceding surgery I tried to collect heart decor and fun things to decorate the boring hospital room as well. 

I needed to have a small token of my appreciation for anyone who came in contact with our family. Each person meant so much and played an important role in my daughters care. So I made heart pins. I bought the hearts, glitter painted them, added the stitch and pin back. We put them in cute mesh bags with thank you tags. All supplies from the Dollar Tree! Every doctor, nurse, specialist or volunteer got one!

And then there's those doctors, the miracle workers. I needed just a little more. So I prepared and framed a heart wordle for each doctor and of course, Nurse Natalie! Each was so appreciative!

These things helped me occupy my time until surgery came. I knew I could not control any part of surgery and the outcome, but I could control my outlook and my energy. I needed to turn that stress into positive things to get  by. After the girls went to bed, I did these things, during lunch I worked on this. Basically any time I had to think was filled with these projects. It helped- it really did!

What have you done to help yourself or others cope? Please share your ideas...I LOVE hearing what you have found to work or help! 

Please comment below!

Kellyxxoo

CHD week starts TODAY

So, I began our CHD journey February 1st.
Find it here.


Our story sucks, but it is no where near as bad as other families have it. It was very hard to learn our daughter had a heart defect and live it with it. Luckily for us, it was a defect that could be fixed with one surgery. So, I had to find ways to be OK. Because no matter how many surgeries your child has- even one is bad. So, please, as you read this, know I am not comparing my journey to any others and I am sharing our CHD journey. Know that I am aware others have it worse and I feel for them. But, for us, it sucked too.

To pick up from my last CHD post...

    We lived normally and visits to the cardiologists continued and even went well. When we got to skip a year- that was AWESOME! So, we went back in August 2013. All looked well- her check up and EKG. The doctor decided to do an Echo. We joked on the way to the room, we would miss seeing  him- but not really. We walk in to room, get her settled and they start. We're talking with him, he's watching and suddenly he says "Go back, did you see that?" Talking to the ultrasound tech. My heart sank, lump in my throat. The room tunneled. What was happening? It wasn't sounding good. My husband and I just looked at each other. We had discussed surgeries in the past. I knew there were other options than Open Heart Surgery (OHS). BUt we were good- it had to be something else, surgery was not needed- right?
      So, he continues- our conversations stop- felt like forever. He says she has an ASD that needs to be repaired. "OK. So, how do we do that?" Surgery was his answer and I was like OK. He said we needed to call insurance and set a date that would work. He told us- I am sure- I don't remember exactly- it was going to be an OHS. I remember the nurse taking Livy out of the room so we could ask questions, cry and get 'counselled.' It was awful. Terrible. I mean, we were doing good. We skipped a year. It was great and then, like a gut punch, our world turned upside down. And insurance?! I didn't even think about  it. We have to pay for this. What will it cost? Shit, she needs surgery...OHS. WTF. It was terrible. Ugh, even thinking about it now sucks.

     I don't remember exactly how everything went down- it was so surreal. I know I called the Dr. a lot and took notes and goggled. I will never forget when I realized they were going to cut into her breastbone. I know it sounds stupid- duh... but you aren't always thinking clearly. I remember, I was laying in my room calling the doctor- taking notes. And I was inquiring about the incisions that can be made under the breast hoping this could be possible for her. And I said, "How are you going to fix her heart?" He replies, "They would open her up." And I asked, " How will you get to heart?" "He said, "What do you mean?" And I totally questioned my knowledge of the human anatomy and said "Her heart is behind her ribs, how will you get to it?" And THAT was when I heard those words... they were cutting her sternum. Cutting it open. Her perfect little body was going to be cut open- open. I cried and cried and cried some more. So many things go through your mind. It was crazy.  She a Sinus Venosis as well as as Ostium Secundum.

After awhile, we found out who our surgeon was Dr. Michel Ilbawi. This man is nothing short than Amazing. When we met with him, he was so kind. Of course before hand I had researched and researched him. I logged on to Babycenter to see if anyone had used him before- they had he was amazing for them too. I found he had  lead a team of doctors in this Documentary Hearts of Hope. SO, when we met him he was just perfect. He was going to fix my Livy and he did.

We scheduled surgery with Nurse Natalie. LOVE her too. April, 23, 2013. Months and months to live with and carry this information. So scared of what could happen. I had to find a way to cope. I did, many, many ways...Look for my next CHD posts which will include ways I helped myself, my family and my daughter (who knew nothing of the surgery) continue on, knowing 4/23/13 was coming. Slowly. Too slowly. I was like life stopped on that day. We looked forward to nothing, nothing past THAT DAY.

Spread CHD awareness... share with others 1:100 are born with CHD and leave the hospital.
Share our story if you'd like :)

Kellyxxoo

It's February- Heart Month- CHD's SUCK!

CHD...Congenital Heart Defect-HUH??

February is American Heart Month. Mean anything to you? Maybe not. In all honestly up until 2010, it didn't to me either. I mean, yea, we do Jump Rope for Heart at school, wear red and eat healthier in the teacher's lounge. But that was about it. But you see in 2010, Mayish, that change. My first daughter Olivia...

was very sick and I had to call the on call doctor at 2 am. I reached Dr. Dana Hartwigsen, who has since moved to Iowa and we are heartbroken. She spent so much time with this distraught mother. She checked and rechecked herself- which meant so much to me- no one knows everything. I instantly knew I was switching to this amazing woman/ doctor. First time I took her in, she remembered us or read her notes/chart whatever. As a mom, OMG that meant so much. I fell in love. 

She did her routine stuff and in listening to Olivia's heart, she said "Has she always had this heart murmur?" GULP... Heart sinks, Stomach turns, Eyes well up annnnnd I puke a  little in my mouth- sorry for the details! I had no idea what that meant other than her heart was not right. My beautiful baby. We had been to the previous doctor and bazillion times. She never had it then. A Heart murmur?! 

Dr. Hartwigsen calmed me down as much as possible. I called my parents (my husband was at the visit) to find out my dad has one. OK, OK. Maybe I can handle this. Maybe. 

So...a few weeks later we go to a local heart doctor and because she is so little he refers us to a pediatric cardiologist. Ok, maybe I don't got this. A new doctor a special doctor- for little people? I was supposed to be no big deal. Here we go- PANIC! 

So on we go and schedule with Dr. Steven Neuberger. Very kind man, gentle with the little ones and later on I will find THE BEST Pediatric Cardiologist EVER. We take her and he explains she has an ASD (Her oxygen rich blood was leaking into the oxygen poor blood's chamber) as well as Pulmonary Stenosis. HUH?! What the hell does all this mean? Dr. Neuberger did his best to educate and calm us. There was a very good chance it would all heal on it's own. Cool, cool. THAT will happen. Right?! So, follow up visit next year, no restrictions...We are on our way will our broken-hearted baby that we would love forever and ever. All would heal all would be fine. Right?

WRONG.

And that, my friends, was 2010, when heart month became a little more important. It's importance now has exponentially grown. And that change happened in 

2013.

In order to try to raise awareness; I will share our personal journey and what happened. I will post our journey throughout the month of February, focusing on the week of 7-14, CHD Awareness week. 

CHD's are the #1 birth defect and #1 cause of birth defect related deaths. 1 in 100 babies are born with this defect. 

Ours was and we took her home... with it UNDETECTED.

Kellyxxoo

If you or some one know needs some info try these links or contact me directly.

It's my Heart

The Children's Heart Foundation

Mended Little Hearts- one of my favorites