Sometimes, on nights like tonight, when I'm up late working in a quiet house while everyone else is asleep I get stuck on a chapter and I'm not sure where to go with it and I start wasting time on eonline or Facebook...and sometimes, a few times a year, I'll click onto the website to view my blogs stats.

Over on my author blog, the hits usually come from an Amazon link, or a Facebook post.

But this blog, Britta's blog, those are different.

They are the reason that I haven't made this blog private, or taken it down altogether.

"Will my child survive TAPVR surgery"
"My baby has TAPVR"
"What are the odds of TAPVR"
"Best hospital for TAPVR surgery"

They go on like that, but you get the point.

If you're here because you've searched one of those things, I want you to know that I'm sorry that you are in the place that you are right now.
I want you to know that I see you.
That I empathize with you. T
hat I am thinking about you and hoping with everything in me that your baby will fight with everything he or she has.
I want you to know how strong you are, and how amazing your child is. How lucky he or she is to have you as a parent.

I want you to feel a little less alone.
I want you to believe in miracles.
And I want you to know that hope is never wasted.

xx
Steph

Happy Second Birthday, Britta!

Dear Britta...one year later

Dear Britta,

I started this blog a year ago. With this letter to you.

I started writing not because I wanted to, but because people told me I'd want to look back after you'd healed and remember how far you've come. Most days I can't bring myself to read the posts that I wrote back then, because I know they are filled with hurt and anger and sadness and confusion. And even a year out, those feelings are just too fresh for me.

I don't post often here, because we've settled into our 'normal' lives, and there isn't much to update. That doesn't mean that we don't pause every single day to reflect on how lucky we are to have you with us, or how thankful we are that you are so healthy.

I hope that for a parent across the world struggling at the bedside of their child, the posts on your blog will help them find some information from someone who has been where they are. I hope that your smiles documented along the way give a stranger a reason to believe that their baby will be okay, too. I hope that your story, of a brave little fighter will be a testament of strength, and that all things are possible. Most of all, I *hope* that the posts here have left others with a little bit of hope.

There were so many times that I sat by your bedside in the hospital and cried in frustration, and said the words, 'this is just not okay!' Because there is no reason in the world that you should have been that sick. It wasn't fair. You shouldn't have come home for weeks with a failing heart. You shouldn't have been turned away for treatment over and over again and told that there was nothing wrong with you. You shouldn't have gone into total heart failure before someone stopped to listen to what I was saying.

But because of your struggles, because of your tenacity, your display of strength and fight and bravery--even as tiny as you were, you taught us to have faith that we never knew we could. You showed us all that even the most fragile, broken hearts could be repaired.

And you made us all believe in miracles.

We love you, Britta Colise.

Happy Birthday, little miracle

A year ago, I was 36 weeks pregnant. I was high-risk, so I went in for my normal bi-weekly NST. I'd had pre-term labor with 3 of my 4 pregnancy's, so, when the nurse asked if I was aware I was having regular contractions I was sort of, "meh" about it because they always went away. They didn't. And Britta was born later that night.

You all know her story by now, but I promise you that not a single day passes that we don't look at this little girl and know exactly how lucky we are to have her with us. We know we don't deserve this amazing child, but we are so beyond grateful for her. Every. Single. Day.

She's our little miracle. She fought harder than any child should ever have to fight to stay alive, and today, on her first birthday, we'll be celebrating not only the anniversary of her birth, but her spirit and strength.

Thanks for sticking with us the last year. 
We love you all.

Happy 1st Birthday, sweet Britta Colise. :)

*Thankful*

Last year at  Thanksgiving, I was on bedrest after a few pre-term labor scares. 

Britta was born a couple of short weeks later. 

We are beyond thankful to have celebrated her first Thanksgiving yesterday & we will forever be grateful to the doctors and nurses and EVERYONE that helped keep this amazing baby here with us.

Blessed beyond words...

We had a bit of a scare over the weekend.

B was fine, albeit a little cranky (she's been teething) Saturday. She slept well Saturday night, but when she woke up Sunday morning, we instantly knew something was wrong. She normally pops up in her bed and smiles and gets super excited to see everyone. She barely rolled over and her eyes rolled back. I picked her up and brought her into the other room and she would try to open her eyes, but couldn't keep them open for more than a few seconds. She was very, very pale and when Chris went to give her her meds, we noticed the inside of her lips were blue.

We threw the first clothes we put our hands on on and took her to the hospital.

After blood work, a chest xray, and other labs, they determined that she had pneumonia and was dehydrated. The doctors there were awesome, despite it not being a specialty children's hospital. They gave her fluids, a breathing treatment, and IV antibiotics there before an ambulance came to transport her to a different hospital.

She is home. And happy and doing MUCH better.

We are so thankful for her amazing strength.

And, to prove just what a tough cookie she is, she started crawling this morning!

Once more...

We have been swamped with packing and finalizing plans for our big move! We are all so excited about a fresh, healthy start!

Wanted to update on Britta while we still have computer's up and internet going here.

She's doing "okay." Her heart looks good, though her cardiologist is still having difficulty viewing her entire heart and valves through all of the crud in her lungs.

Her breathing is not improving despite the addition of new meds, and actually, seems to be getting worse. We went to the pulmonologist again last week and he agreed. Though he feels like she will experience a marked improvement in a drier climate, he wants to be thorough before releasing her to someone new's care and has scheduled her to have an outpatient procedure on June 14th.

We'll take her to Lafayette and they will put her under general anesthesia (dislike) and perform a lung lavage to clear all of the crud out of her lungs and wash them with saline. They will also do a bronchoscopy to check for any abnormalities of her lungs that might be contributing to her difficulty breathing and stridor. They are specifically looking for cysts, tumors, narrowing of passageways and several other things, and will remove tissue samples to test for various conditions and diseases.

While we are optimistic that Britta has nothing else wrong with her, that she has been through enough already and there is no way that she would have to endure any other illness, we are, of course, cautious because we never believed that she would need emergency open heart surgery to save her life either.

We don't love that she has to go through this. Be intubated again or go under general anesthesia, but we are confident in her doctors decision and hope that they will be able to find answers to her breathing difficulties and get her feeling much better very soon.

B had her monthly cardiology appointment today. Everything with her heart still looks great, the valves and connections that the surgeons made are still wide open and look amazing. We are so ecstatic about that.

She also made a visit to our dear friend, Laurie Fontenot today. Laurie was such an amazing support while Britta was in the hospital. She checked in with us, came by and colored and fixed Hailey's hair to help cheer her up, and she hadn't seen Britta since she was just a few days old. I was so thrilled to be able to show her how big and happy she is now! :)

The only negative thing the cardiologist had to say today was that her lungs are still cloudy, and full of crud and it is difficult to see her heart to do the ECHO because of all of the cloudiness. He said that that is just to be expected in the climate that we live in (hot.humid.hellacious.) (okay, I added the last one, but you get the point...) and again told us, as he had several times, that if it weren't so humid here, her lungs would have an easier time drying out and her heart and lungs would heal better and that she wouldn't have to work so hard for each breath.

We have heard this same sentiment from not only her cardiologist but also her pediatrician and pulmonologist. So, we are making a move.

This summer we are moving back to Southern California. We are so lucky that it will not only be a great move for Britta's health, but that we will be surrounded by so many supportive family and friends and the kids will have a blast getting to see and do things they don't get to do here in Louisiana.

We know that not everyone is thrilled about this decision, and if you can't be happy for US, at least be happy for Britta. That her tiny body will have a little rest and she will likely be able to cut the meds that she takes daily in half just by changing her environment.

American Heart Association Heart Walk luncheon

Today, me, Chris and Britta were guests at the local chapter of the American Heart Associations luncheon. They asked me to be a guest speaker, which I was thrilled (albeit nervous as heck) to do!


Here's the text of the speech that I gave...

Before I get started, I just want to take a moment to thank the American Heart Association for inviting me to share our story here today. This is such an important cause to myself, my husband Chris and our family, as we very nearly lost our youngest daughter Britta earlier this year.

About 36,000 babies are born each year with congenital heart defects. That’s at least 9 out of every 1,000 babies born.

Our youngest daughter, Britta was one of them. Britta was born just shy of 37 weeks last December. She was our fourth child, and when they told us she was healthy enough to go home despite some feeding issues, we didn’t question it. At least not immediately. After a week and a half at home, her health began to decline. She refused to eat, and even though she wasn’t taking anything in, she was projectile vomiting constantly. I took her to the doctor several times, I took her to the ER. Each time I was sent home with her, and told that “babies spit up.” But I knew that there was something more to it.

On January 2, 2012, after being sent home from the ER the night before, I took Britta, who was just over two weeks old by then, to her regular pediatrician. By the time we got to his office that morning, Britta was ashy colored, lethargic and critically dehydrated. Her doctor told me to bring her straight to the hospital. That he thought that she had a G.I. condition called Pyloric Stenosis that would require surgery.

At that news, my husband and I were shocked. We had three other perfectly healthy children. And there’s something comforting in that, you know? Something that you take for granted. That all of your kids will be healthy, too.

After they admitted her, it quickly became apparent that this was far more than a GI issue. She went bradycardic several times. She went into respiratory distress. We watched every bit of color drain from her. And it was obvious to everyone that she was fighting to stay alive. Thankfully, a nurse that was working with Britta said, “I’ve called in Doctors Gugle and Kattash. They are cardiologists. We don’t expect to find anything wrong with her heart, but I just want to double check.” While we watched Doctor Gugle do the ECHO on Britta, the look on her face told us that they DID in fact find something wrong. Something that they didn’t expect being that she was almost 3 weeks old. It wasn’t common for a baby to be able to survive with the type of defect that Britta had for that long. She had been at home those weeks fighting hard.

Within hours of our arrival at the hospital that afternoon, Britta had coded multiple times. She was in total heart failure. There was no reason to believe that she would be okay. According to the doctors that diagnosed her, she was one of the sickest babies they had ever seen.

We are so incredibly lucky that we have well trained, pediatric cardiologists here locally that, once they saw Britta and took a look at her heart, they were able to quickly diagnose her defect, despite its rareness, and then make arrangements to have her transported to world class surgeons that night.

Britta was diagnosed with Total Anomalous Pulmonary Venous Return. A rare defect that basically means that all of the veins that bring oxygenated blood from her lungs, were never connected to her heart. So, there was a backup of blood in her lungs, the right side of her heart was incredibly overworked and enlarged, and her body was left oxygen deprived. She was critically ill, and was flown to New Orleans as soon as they were able to stabilize her enough for the flight and would have emergency surgery. The surgery would be delicate. Risky. Especially taking into account how ill she was. But it was the only chance she had to survive.

The cardiac team of surgeons and nurses at Children’s Hospital in New Orleans was the best display of medical care I have ever seen, and could ever imagine. They repaired Britta’s tiny heart and within five weeks, she was out of the Cardiac ICU and back at home with Chris and I and her brothers Liam and Finn and sister Hailey.

The research that the American Heart Association funds is vital to saving the lives of children with Total Anomalous Pulmonary Venous Return and other congenital heart defects. The work they do is so immeasurably important. From testifying before congress about the need for federal dollars to fight heart disease, to public education through their website and from functions like the Heart Walk that  raise money, awareness and hope.

During the past year, they have spent almost 8 million dollars on research related to heart disease in children. Many awards fund research projects aimed at determining how the heart develops before birth and how congenital heart defects develop. Research that will help babies and children like Britta survive every single day.

One of the most thrilling moments in life is when your child is born, and hearing the doctors and nurses tell you that they are perfect. Ten fingers. Ten toes.

One of the most hopeful, is when they send you home with your newborn. There’s that feeling of unlimited possibility.

One of the most terrifying is when you take your child to a healthcare provider and your instincts tell you that they are sick, but the doctors have no idea what’s wrong.

One of the most horrific, is watching your babies lungs stop pumping. Their heart stop beating. Right in front of you.

One of the most humbling is thanking the person who somehow saved your child’s life. To shake the hand that literally repaired your baby’s broken heart.

One of the most gratifying is standing before you today to share Britta’s story. And how hard she fought. And hoping that it will inspire you to take care of your own heart and educate those that you love.

There was no reason to think that tiny Britta would be okay. That we would ever take her home again to be with her brothers and sister.

But she was. And we did.

And every family deserves an ending like ours.

And with the research and work the American Heart Association does, more and more children will survive and get that happy ending.

Thank you so much!

Not a whole lot going on in our world, but wanted to take a minute to update you all!


Britta is now off of all heart meds! She is still on several medications for her lungs and a couple of other issues, but her heart is healing beautifully and she is healthy (for the most part) and happy (all the time!) :)


Here she is last week playing on the floor. She loves to kick around. I was cleaning out some of her "older" clothes. This is one of the Onesies that she wore in the hospital after she was born when we stayed a few extra days (before she was diagnosed with TAPVR). She was around 4lbs 14oz then. She has grown SO MUCH!

In other news, I received a donation in the mail this week for Britta's medical expenses from a fundraiser called HELPING HEARTS FOR BRITTA that Cupid for Writers put together a few months ago. We are so humbled and thankful for the help! She managed to raise enough to cover the co-pays for Britta's meds for almost an entire year. AMAZING. Thank you to "Cupid", and to all that donated. We hope that karma kicks in for you ten times over. 


xx-
Steph