Friday, January 8, 2010

Natalie's story.

(I tried to post this to her Carepage but right now, that site is acting strange.. so here ya go!)

Natalie was a full term baby that came from a very smooth pregnancy and arrived on April 21, 2007, which happens to be her daddy's (Richard Bent's) birthday. =) She was induced, so there was some mild planning there. The birth was fast and furious and also, natural, so when she was born 4 hours after the pitocin began, I was hella thankful.
We had no idea that anything was wrong with her heart until the next day when the nurses and pediatrician heard her heart murmur. My oldest brother and my mom in law both have murmurs, so the word "murmur" wasn't brand new to us. We didn't worry. We followed up with our regular pediatrician a few days later after Natalie coming home and sure enough, the murmur was as loud as ever. Her son had a VSD, had lots of experience with Johns Hopkins Hospital in Baltimore so we went there about 2 weeks later to have it checked out.
I'll never forget that day. What parent can. I sat next to Natalie while she lay on the table drinking her bottle, while she had her echocardiogram completed. She was so calm. Gosh she was so good that day (and so was James..his Gammy kept him company in the other room so we could quietly have the test done). Dr.R, now one of our favorite cardiologists ever, looks at the screen and says, "my my Ms. Natalie..you are more trickier than I thought". I didn't really know what to think. We get the news about 20 minutes later that she has "Tricuspid Atresia" with a VSD and ASD. I didn't even really know exactly how the heart worked, I just knew that there were supposed to be 4 pumping chambers. Natalie had 3 and one of those still wasn't strong enough. I cried like any parent would. I remember coming home with diagrams, big words, and confusion and trying to explain it all to Ricky when he came home from a long day of work.
That was mid-May of 2007.
She ended up doing fantastic, stats in the 90s and high 80s for blood oxygen levels which was awesome. The doctors and us parents were so happy that she was able to just skip the BT shunt altogether. Her strong heart didn't need it.
By September 2007 we noticed that Natalie's color would go from beautifully healthy to purple and blue in a nanosecond and the episodes would last long ..sometimes up to 5 minutes. She seemed unphased when they happened but still..it was scary. So with the Hopkins team helping us keep a close eye we ended up having her first heart catheterization completed late September 2007 and scheduled first open heart surgery on October 1st 2007. Her cath. went very smoothly..zero complications. But, the cath. doctor came out (before we could go see her) and says that it's a good thing her open heart surgery was scheduled so closely to that cath. day (about a week away from this point) because if not, she wouldn't make it.
Yeah. Not what you want to hear.
But, once again, Natalie continued to be a complete miracle and has her first open heart surgery with zero complications again. And literally, zero. Everything went beautifully and many of the doctors and students in the pediatric cardiac unit at the hospital would visit her because she was a shining example of positivity when it came to heart conditions.
She came home 4 days later on October 5th and did so very well. It was rough at first but only the first few days were full of many cries.
Natalie spent about 2 months to recover and unfortunately, this did coincide with some physical developments that were put to the backburner. But we got it together and quickly enrolled with the Infant and Toddlers Program to get her the physical therapy she needed to catch up. Mentally however, this kid was and still is ahead of the game. She could hold a crayon just like you and I at 9 months.
Everything from then on until April 2009 went great. She stayed on track with her physical therapy and started to walk by 20 months old (January 09). We had her heart checkup in April 2009 and everything went really well. This was our last appointment with our favorite Dr.R because we were moving to Colorado the same month and wanted to get his okay. He gave us his blessing and even said that we could wait a year until Natalie's next heart checkup since she was doing so well.
We move to Colorado April 20th, 2009.
We get connected with all of the resources we need out here to get things back on track with Natalie's care and finally connect with Denver Children's in August 2009. We put it off because, hey we have so many more months until April 2010. Well, we take her for a heart checkup anyway September 2009 and find out that Natalie's doing great, but because she qualified for Denver Children's height, weight, and age requirement for the Fontan, why wait?
So, we had her 2nd heart cath. scheduled for October 8th and told that they just want to get a better look at heart to get ready for the surgery and also to make sure that no collateral veins grew around her heart.
We also started to notice the blue/purple spells again. No breathing issues or anything like that, but it still was a bit scary. Deep down, we knew that the surgery HAD to come sooner than the spring or summer of 2010.
Zero complications from this cath. too thank goodness, but they did find 3 collateral veins near her mammary glands that needed to be coiled off. We don't know how or when they grew but they aren't good veins because they make the heart and lungs work harder. The blood flows backwards in the veins, so those collateral veins were useless, if not, harmful to Natalie. The body has a weird way of overcompensating sometimes.
They were coiled off with thin bands of platinum and stainless steal. Also, we were told by the awesome cath. doctor, it's a wonderful thing they were found and taken care of because it just makes the Fontan surgery and recovery even better. We are still so thankful they found them. We've noticed that her energy levels are way up there now.
So, here we are! Our silly, brave, and very energetic Natalie is ready to have her 2nd open heart surgery, the Fontan on January 12th 2010. It's a heck of alot sooner than we expected, but the timing works out so well. She'll get to have all of this done and move on before she turns 3.
I think it's safe to say that a huge celebration will be taking place for her birthday this year.

8 comments:

Katrina said...

Dawn, I'm praying, and praying hard for you all.

I can't wait to hear about this 3rd bday celebration. :)

Chicke3 said...

Dawn it still amazes me how strong and brave you are! I am not sure if I could handle finding out my baby has the problems Natty does. I am sure that she will come through this next surgery stronger and healthier then ever! If there is anything I can do from over here on the east coast just let me know and Ill be praying for you guys!

Love,
Cassie

The Tin Woman said...

Just saw your name listed on Lauren's Heart blog and wanted to send you well wishes. I am a tri-cuspid kid myself, 30 years old now, wedding on the way. I had my Fontan back when I was about 6. Life hasn't always been as easy as it is for everyone else, but it's been a great one. Natalie sounds like quite the trooper and I am sure she'll be even more of a handful once her surgery is behind her.

My thoughts are with you!

Christi

Chris, Kathy, and Sam Wimberly said...

Wow, our children have had very similar stories. My son has Tricuspid Atresia with a VSD and ASD. He got to skip the BT, and (with the exception of a brief scary episode before his Glenn) recovered from the Glenn with flying colors! I will be praying for your family!
Kathy Wimberly
www.lilwim.blogspot.com

Marie said...

Dawn, I am praying for you all and can't wait to hear how Natalie made out!

connie and adam said...

Hi I found your blog on Lauren's Heart Blog. My son also has Tricuspid Atersia and he has to get the fontan surgery in may or june. I will be praying for you and your family tomorrow especially for Natalie. My son's blog site is http://adampeanut.bloggspot.com

Sundie said...

Prayers! I pray all goes well and that recovery is swift and easy!
Hugs,
Sundie

Dawn B said...

Katrina- thanks so much =)
And I'm having a feeling that this birthday party will consist of the color pink and Cinderella themed. lol
Cassie- I fell apart the day I found out about Natalie. Not only did she give me the strength to deal with it, but family and friends have been TREMENDOUSLY sweet and supportive. It's amazing how many people I've met since she's been born and we found it. We've been very lucky. And thanks for the offer of help. I can be sure of this- whenever we do come to visit in MD, we want to see you.
Christi- I am so so happy that you found us! Isn't Lauren's blog the neatest thing? Because of her she's allowed me to find more people like you who can relate to what we're going through. Can't ask for any better than that. ;) And I am in awe of you. Just so you know. I can't wait until Natalie knows how to read so I can introduce her to awesome people like you. So glad you found us.
Kathy- THAT IS SO COOL!! You are the first family I've met with such a similar story! When does your son have his Fontan?
Marie- you are a perfect example of how I have stayed sane through all of this. Thank you Marie. ;)
Connie- so happy you found us!! Your sweet little Adam is adorable!! Yours is another blog and button that I'll have to add on my page so I can see your updates. May or June for the Fontan eh? How old is he now?
Sundie-thanks for checking on us!! So appreciate it!! And happy 1 year Fontanniversary!!