March 31st

Thursday morning we woke up early and got dressed in our turquoise to celebrate CDH Awareness Day. We also were celebrating Emma's 1st birthday as well since they ironically fall on the same day. Emma woke up in a very happy mood and we were glad since we were headed to my work for a group turquoise photo. It was touching to see all of the turquoise that everyone had on in honor of Emma and CDH Awareness Day. The school ended up raising $400 that was added to Emma's donation total for Emma's CDH Awareness Day that took place on Saturday. Before we headed to my work we watched the news to see Emma's birthday announced. Her face lit up when she saw herself on tv.
Turquoise Day at Mommy's work

I got off work at 11:30 - I had decided I would take a half day personal to spend time with Emma for her birthday. We had to head to the hospital to get a repeat CBC to check her white blood count. After we were done at the lab, Grandma Swersky had arrived and we picked her up for a yummy birthday lunch at Cracker Barrel. I ordered Emma her first kids meal - scrambeled eggs and a piece of toast - and she ate almost all of it. After a diaper blowout that led to a quick washing of her CDH Awareness Day outfit we headed to C-Ville to feed the Ronald McDonald House Families in honor of Emma's birthday. We laid out the spread talked with a few of the workers and then headed to Sam's Club to pick up her birthday cakes. It was then a quick trip home with a pit stop at McCalister's Deli for dinner.
Daddy,Mommy, and Emma ready to deliver the food for the families.

Emma's sign made the famous C-Ville RMH wall of thank yous.

Emma with the sign, pizza, salad, cupcakes, and pop we took to feed the families at the RMH.

One year later and we are thankful that the hospital is in the background and we have our healthy baby girl in our arms.

Once home(at 10:00) we watched the DVR'd 5 pm news since that was Emma's big tv debut. It was a wonderful piece and we are so thankful that it was broadcasted. I will try and post the link later for everyone to check it out. I need to still see if it is on their website.
We finished Thursday up and geared up for Emma's CDH Awareness Day and her family birthday party that would take place on Saturday. More on those events to come.

1 Year

Dear Emma,
Wow!!! We can hardly believe that tomorrow you will be one whole year old. So many things have changed in the last year. By the time you are old enough to read this letter you will have a clear understanding of the eventful way you made your entrance into this world. The day you were born I saw the miracle of life happen right before my eyes and the next thing I knew I was praying for a miracle to keep you alive. It still brings chills to me when I have to think back to filling out the birth certificate information before we were allowed to leave for UVA. The doctors had told me you might not make it through the night and through tears as we filled out your birth certificate that lump in our throats reminded us that we could possibly have to fill out a death certificate all in the same few hours. Thankfully Jesus knew you needed to stay on this earth and would be one more child to help spread awareness here on Earth. We find it ironic that you were born on CDH Awareness Day - I guess that means you will do big things one day. Maybe one day you will be on a medical research team that helps figure out why this birth defect happens or maybe you will become a pediatric surgeon who performs life-saving surgeries like the one you had. What ever you become one day we will always be reminded of the blessing and miracle that you are in our lives.
The last year has been a busy one. For months we average 3 appointments a week between weight checks, surgery follow ups, and therapy. We would have been fine with 100 appointments a week because all the appointments were to help you get stronger. It was a family effort with therapy. We often laugh when we think of Cloey at just 7 years old helping you out with tummy time because that is what your physical therapist said you needed. You have taught us to turn to family, friends, our church family, and the community to get you the help you need. At such a young age and when you were such a tiny person you were moving mountains.
Now you have reached that milestone of turning one year old. To us it will be a day of happy tears because the reality is that 50% of children born with CDH don't get to see their 1st birthday. You have changed so much in this year and proved so many people wrong. These days you let your personality shine through and can be quite the talker. You favorite person is by far you Sissy and your face lights up the minute you see her. Mommy and Daddy aren't have bad either in your book. You are getting quite the vocabulary, but love to say dog and Tucker. You continue to have eating issues, but we are learning to live with the fact that you will always be a peanut and as long as you are healthy that is fine with us. They said it could be a year before you crawled and you proved them wrong and started crawling at 9 months. Walking doesn't seem to interest you right now, but why would it when we can easily carry you around. Bubble Guppies and Barney are two shows that light up your face and can easily dry your tears. You are in to everything as I am having to stop and chase you down the hall every few seconds as I type this, but you laugh and crawl away faster because you like that game.
I will always remember how I had "dreams" of what life would be like when you were born. How I would get those perfect newborn pictures, and I did get LOTS of newborn pictures they just involved lots of tubes and wires. How we would come home after a few days and get very little sleep. Well our home became the Ronald McDonald House and we did get little sleep because we didn't have you with us at night. How your sister would hold you and be amazed, but she had to wait nearly 6 weeks to even meet you. How I would lay in my hospital bed and just hold you for hours, but instead we waited 16 days to hold you. Regardless of the fact that our "dreams" didn't come true in the way we wanted them to, they were still full filled. You taught us early on that you would do things your way and when you wanted to and all that we ask is that you continue to fight and never, ever, ever give up that fight you were born with one year ago.
God blessed us with you for a purpose and that purpose is to spread awareness. Today you made the front page of the paper and tomorrow you are on the news. Saturday we will hold the 1st Annual Emma's CDH Awareness Day and this is only year one of the awareness you will get out there. You have forever changed our lives and made us better people in the process. We thank you for the joy that both you and your sister bring into our lives.
We Love You to the Moon and Back - Forever and Ever,
Love,
Daddy, Mommy, and Sissy
Emma 1 day old in the NICU

1 month old

1 year old

A Whirlwind of a Week

The week has started and we are in overdrive at the Mazingo household. Today started with the interview and filming for the spot on Emma and CDH that will air on Thursday. She thought the footage would be on their website for a couple of weeks and once I get a link I will share it with all of you. It was nice to be able to talk about our experience and how we want to "pay it forward" and help spread CDH Awareness. Emma wasn't exactly the happiest camper, but I am sure once they piece it together it will turn out great.
Emma with Hollani and Trevor after the interview.

-Tuesday is a trip to the store to get a few things that are needed. Then once I am home it is time to cut, cut, and cut some more raffle tickets.
-Wednesday I have a meeting all day and then once home I have to pick up the cupcakes to frost for me to take to work for Turquoise Day.
-Thursday I am only working a half day in the morning. We are having Turquoise Day for CDH Awareness and turning it in to a jeans day with a $5 donation. Jason is bringing Emma down for a group shot of everyone in their turquoise. I will leave at lunch time and we are headed to Augusta Co. for Emma to get a blood test done after her last hospital stay(I know it stinks its on her birthday). Then we are treating her to a special lunch with Mommy and Daddy and hoping maybe Grandma Swersky is in town in time to go with us. That evening we are headed to C-Ville to feed the families that are currently in the Ronald McDonald House in honor of Emma's birthday and the blessing the RMH was during Emma's NICU stay. It is a tradition that we plan to carry out for many years to come. Then we are going to pick up her cake and I am sure grab some dinner.
-Friday night I will stress about all that needs to be done, but will also remind myself why we are having this event. It is my own little way of keeping myself in check.
-Saturday the event is from 11-1 and then we are having a small family birthday party at 3 at our house. After the cake and ice-cream it is a pizza dinner because we will surely be worn out by this point.
-Sunday is a day of uploading pictures and reflecting on the powerful message we got across in honor of Emma.
-Monday it is time to start thinking of what we can do for Emma's event for next year.
Check back towards the end of the week for Emma's 1 year bear picture. A big thanks to all the generous people who have donated money to our cause to help make Emma's event such a success. We are thankful that we have so many people who keep up with our family and want to participate from afar.

A Picnic at the Park

We had a busy and fun weekend with Cloey Bird. Saturday morning we all got up and around to head out for some errands. Before leaving we decided to go ahead and pack a picnic lunch and stop by the park to have lunch and play after errands. The weather has been beautiful mid 70s or so the last 5 days and it is too pretty to pass up. We had a yummy lunch of sandwiches and goodies and then it was off to play. Emma is at an age now where she is actually enjoying the playground, and Cloey is riproaring all over the place having fun. Daddy managed Cloey while I was on Emma duty. After a good while at the park we headed home, but first made a stop at McDonalds for an ice-cream cone. Emma was completely tuckered out from the experience and was a sleep shortly after leaving the park. Saturday night we had Grammy, Pop Pop, Nana, and Paw Paw down for a yummy dinner and some family time. It was then movie time for the night before waking up for our traditional Cloey Sunday. It was such a wonderful Saturday as our family of 4 and we are looking forward to many more fun picnics and time at the park.
Emma isn't looking, but I love how her little hand is resting on Cloey's leg.

Cloey in deep thought. Once you look at the next picture of Emma it is obvious she gets her "deep thinking" from her big sissy.

This picture makes us wonder what she exactly thinking about.

I am pretty sure we have this same picture of Cloey over the last 4 or so years. I will have to dig them out and compare how much she has grown.

Sissy giving Emma a little push.

She loved the swing!!! Smiled and laughed the entire time she was in it.

Emma after an exciting time at the park.

Proclamation

Well after our 4 day hospital stay last week, we were released just in time to be able to head to the Buena Vista City Council meeting to receive the proclamation that makes March 31st CDH Awareness Day in Buena Vista. We were so very excited that the city decided to honor us with a proclamation, and even more excited that we were able to leave the hospital in time to attend. We had Emma dressed in her turquoise garb. We thought she looked absolutely adorable all dolled up. After receiving this proclamation on Thursday night from Buena Vista, we received one in the mail from Staunton on Saturday. Way to go Emma helping to spread the awareness!!!! We also got word last week that the WDBJ 7 News out of Roanoke will be doing a clip on Emma and CDH and it will air on March 31st. If they post the clip on their website we will let you all know.
***Remember to wear your turquoise on March 31st - CDH Awareness Day and Emma's Birthday - in honor of all those who have been affected by CDH. We are turning it in to a jeans fundraiser day at work to help raise money for Breath of Hope. If you get a group of people together snap a photo and send it our way. We will be making Emma a turquoise memory book.
Our CDH Miracle and her proclamation.

Intently reading her proclamation. So proud of what she accomplished.


P.S. We had a great Cloey weekend that include a picnic and some time at the park. New pictures of the girls from our time together. I will upload the pictures and post more Tuesday or Wednesday. Also went for Emma's follow up after her discharge from the hospital and she has gained weight and is looking better. They want to run another test again just to look at some numbers, but other wise she looks to be on the upswing of things. We don't have to go back till April 7th for her 1 year check up.

It has been awhile, but....

things have been crazy around the Mazingo house. We had a wonderful weekend with Cloey two weekends ago, wow where does the time go? She had a friend over and they totally destroyed the house, but they had fun and we dealt with it. Emma had her first experience of not being let in their room because Cloey was playing with a friend. Emma was determined and it wasn't until we put a baby gate in front of the door that we were finally able to stop her. Like always the weekend went by with Cloey too fast, but it will be time for her to come again in just a couple of days.
Now fast forward to this past weekend. Emma has kept us on our toes. She came down with the sniffles and a bit of a cough, but after getting an RSV vaccine Dr. Bob felt she just had a common cold. She suffered through it all, but things got worse. Friday night she had a HORRIBLE night sleeping. She would sleep for 30 minutes and then be awake for one to two hours in complete melt-down mode. The next morning she seemed okay and took a nice long nap. We left Grammy and Pop Pop's house and drove home and the fevers started up. She was having fevers over 102 and they weren't going away with any fever reducer. Back in the car we went to go to the ER. We were there for quite a few hours and after an examination and chest x-rays it was determined she had an ear infection(mild one). We got home around 3:30am and might have gotten to bed around 4am. Sunday the fevers continued. Called the nurses hotline and they suggested we just wait and not go to the ER, but rather get her into the office on Monday. The fevers were high, we were stressed, but we did what they said. Monday Daddy stayed home and got an appoinment scheduled for 1:45. I left work to go to the meeting with them. When we got to the office her temperature was 105.1 and by 2:30 we were being admitted to the Peds Floor at the hospital.
We are still here today(Wednesday night) and are hoping to head home in the morning. After lots of tests, bloodwork, and more x-rays(that were even sent to UVA for her surgeon to check-out) it has been determined that Emma has a bacterial infection in her blood. So the mixture of ear infection, cold, and the bacterial infections was more than her little body could handle. She has had 2 doses of strong meds and was able to be IV free today, but they hooked her back up because her intake has been low today.
Our little girl keeps us on our toes and while we are tired and frustrated we wouldn't change it for the world. We are still busy planning things for her big awareness day on April 2nd. I will get some pictures from 2 weekends ago up once we get back home and will add other from this weekend with Cloey.

Future American Idol Finalist