When Worlds Collide

I've mentioned my friend Tiffanie a few times on here --- and perhaps some of you have seen me link up with her "Product of the Week" party on Thursdays. What you may not have known is we have never met in "real life". We've followed each other's stories, commented on our respective blogs, and sent emails. It's always a trip to meet someone outside this virtual world, someone you feel like you absolutely know, and a family you actually passionately care about.

Long story short (and you can read more about P's story on Tiffanie's blog), her son was diagnosed in utero with a very severe heart condition. Actually, so complicated and severe that they didn't know if he would survive birth, much less the very serious surgery that would soon follow. But God had BIG plans for this little man and he not only survived, but has absolutely thrived. He is a walking, talking, heart baby miracle.

So this is where the small worlds come into play --- my good friend Katie (who yes, I've mentioned here too before) went to high school with Tiffanie's husband. So she knew about their story and shared with me. And then as luck (or God) would have it, Katie's friend from college Lisa (who I connected with the same way & eventually met as well last year), was also at TCH with HER son, Field, having surgery the same day as little P. So I had the privilege of praying for these two very special families at the same time. And Tiffanie & Lisa got to meet and keep in touch. Then when it was our turn for surgery, all of these families in turn rallied and prayed for Quinn. Kinda amazing. No, actually really amazing. I love how God works.(And does any of that make sense??? ha)

Matt couldn't understand why I was a little nervous to meet Tiffanie, Mr. Gherkin (as she calls her hubby), and P. But there's this little safety in our blogging world --- and my stupid insecurities led me to wonder if she would like me outside just reading our stories, would we get along, how would our husbands like each other, etc, etc. I know, kinda stupid and a little "high school" for someone who's 32!

But I was also super excited to finally get to hug her and her sweet little miracle. Which I finally did last night. And all of my worries were wiped away almost instantly. Tiffanie is as warm, sincere, cute, and funny as she is on her blog. Her husband is such a nice guy and had a lot in common with Matt. And P, well, I just wanted to squeeze him all night (he didn't really want me to though!). He was just too precious.

And there was a moment last night when we were all just sitting around on a beautiful Houston night, sipping our drinks and eating delicious food, and watching all of our miracle kids play together - and I was just almost brought to tears. I never expected this journey and roller coaster we've been on, but it has brought some great blessings into our lives. Forever grateful for those.

And as is forever the case in our house as we rush out the door late with babies, booster seats, and food in tow, we forgot our camera. So I'm stealing this picture of P&Q that Tiffanie took. Quinn likes the younger men too apparently : ) At least she didn't try to kiss him too many times. Oh, that crazy daughter of mine.

Thanks, Tiffanie & co, for a great night and meeting up with us. We so enjoyed it and look forward to hanging out again. And to Katie, for always being the best hostess and terrific friend. Her house feels like home to me --- probably because Matt and I spent more than a few nights there during Q's surgery process : ) Love to you all!

Peace Out, TCH - At least for 6 months...

Today was Quinn's follow up cardiology appointment and our first meeting with our new cardiologist. All week, it has been in the back of my mind --- and although I really felt like she was doing well, these heart babies can be tricky and many times, you can't tell if they are starting to have problems. This morning I was my typical bundle of nerves and spent a good part of it in prayer. You just never know...

Well, it could not have gone better.

It was the full-scale work up, EKG, chest xray, blood pressure, weight, echo, the whole kit and caboodle. And Quinn could have not have been better through it all. She handled EVERYTHING like a champ. Oh, and did I mention that our new cardiologist (still affiliated with TCH) has an office only 20 minutes from our house with FREE PARKING AND NO MED CENTER TRAFFIC? Can I get an amen???

Anyway, here's the scoop - pulse ox levels are still great in the 98-100s. Perfect.

Her echo is what they would expect to see with someone with Q's condition and particular defect. Her right ventricle, which was quite "stiff" as they call it following surgery, is now pumping much better and is "happier". Her Pulmonary Valve is still bad and will require intervention at some point. However, Dr. R predicts it could be mid-to-late teenage years before we need to do anything, although it's not a perfect science. And by then, who know what technology will be? It could be an outpatient catheter procedure vs another open heart surgery.

Another two areas they will keep an eye on is the narrowing of her pulmonary artery and her aorta (left side). Right now they are functioning well for her size but they will have to keep an eye on them to see if they grow and widen as she does. If they don't (and there's a good chance they won't), then those will require intervention through catheter where they go in and place a stent to open up those vessels. Again, it's a watch and wait thing. But to hear that can be corrected via catheter is music to my ears. And she doesn't expect that anything needs to be done anytime soon for those areas.

We LOVE, LOVE, LOVE our new cardiologist - she is incredibly down to earth, wants to be called by her first name, old enough to be "seasoned" but young enough to be on top of new developments. Not part of the old school for sure. And she was as excellent with Quinn as she was with me, explaining things to me in ways I could actually comprehend and visualize. Always key.

Blessed, blessed, blessed beyond measure. We are acutely aware that there are so many other children who do not have such fortunate outcomes. And yes, we have walked through the fires too, but to be able to come out on the other end, with such positive results and a great prognosis for Q's life, well, it just doesn't get any better than that. And I can't think of a better way to start our weekend.

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And I'm also going to combine my "Product of the Week" post with this one because these books literally kept Quinn entertained the entire 3 hours appointment. I am OBSESSED with these Priddy board books. They have larger ones (First 100 Words, First 100 Animals) that the kids love. But they also have these smaller ones that are great for travel. Whenever we go to these appointments, I always bring my own toys, because well, yuck on nasty doctor's office toys. Quinn and I had a ball reading these today. She shocks me with how much she picks up everytime we go through them. Highly recommend!!! This group below actually comes in a 4 pack for about $15.00. So worth it.

Y'all have a great Friday! We're off to date night!

One Last CHD Awareness Post

I just wanted to share one more post in regards to Congenital Heart Defect Awareness Week (Feb. 7th-14th). It's such a special and important week for all of us heart families whose lives have been dramatically changed by a child with a CHD.

One of the pledges that our family made when we found out about Quinn is that we would do whatever we could to support and promote awareness of these children --- whether it was through sharing her story, financially supporting various foundations, participating in "heart walks", etc.

Yet, it can be overwhelming where to even begin. The need is overwhelming and yet, while there are organizations out there to assist in a variety of ways, I never came across one that offered a comprehensive look at CHD's. 

Early on in Quinn's diagnosis, I discovered that a girl I used to play soccer with at LSU had a son with Tetralogy of Fallot (a "cousin" of sorts to Q's disease). Thank you, Facebook, once again! Anyway, their son had surgery a few years back  and is absolutely thriving. It was another story in my hope chest that continued to give me faith that our little girl was going to be fine. 

Their family has felt so passionate about the all-encompassing approach to CHD's (research and expert advice, patient advocacy, stories of inspiration, and even "patient pages" where you can keep family & friends updated during times of surgery, etc), that her husband created an amazing website and blog, http://www.heartwaves.org/. They recently launched --- no coincidence right before CHD awareness week.

 I HIGHLY encourage all of my heart parent followers to go take a peek at their website and become a follower on facebook - and please share with your fellow heart friends! I have loved every single blog entry they have posted because they have covered the full spectrum with an amazing amount of honesty, integrity, and HOPE.

Happy CHD week to you all!

Product of the Week: It's Slighty Strange but oh so IMPORTANT

I'm veering off the path of my usual beauty/hair/make up products this week in honor of CHD awareness week (Feb. 7th - 14th).

My daughter Quinn was born in June 2010 with a Congenital Heart Defect called Double Outlet Right Ventricle with Pulmonary Stenosis and Ventricular Septal Defect, among other things. She was successfully repaired with back-to-back open heart surgeries this past fall (Sept. 27th & Oct. 22nd). She still faces at least one more surgery in her lifetime to repair a bad pulmonary valve but she is a CHD SURVIVOR and our little hero.

By the Grace of God, her CHD was diagnosed in utero at 23 weeks which gave us precious time to  research - learn more about her condition, find the best hospital and ultimately secure the best doctors and surgeons for her care. It also gave us time to adjust to what we would face early in her little life --- although nothing can really prepare you for knowing your daughter will undergo life-saving surgery.

However, through "heart networking" as I call it, I have come across so many stories of people who never knew their child had such a defect. Some of them were discovered in the hospital and some were not discovered until days or weeks later when their child started experiencing problems. Those latter children lost the precious gift of time - and some tragically lost their lives.

So my "Product of the Week" is a simple, life-saving device called a Pulse Oximetry machine. It is a simple machine that has a probe attached to the end which you place on an infant's toe to measure their oxygen saturations. If a child measures lower than 93 (so I am told), then it can be an indication for poor heart function. It is painless and literally takes just a minute to measure.

Unfortunately, not all hospitals make this a mandatory part of the newborn screening process. I am on the "Pulse Ox" train - meaning, I believe EVERY SINGLE BABY BORN should be screened in the hospital right after birth, during the APGAR tests. If you are pregnant or know someone who is, please, please, please, share thsi information and ask for this simple screen if your hospital does not mandate it. It could save a life. Please also check out this advocacy link for mandatory screening.
(And goodness, I know pregnant mommies have so much to worry about, so I don't want to raise unnecessary alarm - but the fact is, approximately 1 in 100 children born in the U.S. have some  type of CHD. Y'all, that's not a small number.)

We are actually proud owners of a pulse ox machine --- after making monthly "rental" payments for a couple of years, I tried to return it to the company this past December. Well, lo and behold, our monthly payments apparently exceeded the cost of the machine, so we now own it. If you need one, we got it : )

(And btw, your pediatrician's office should always have one on hand if you have any concerns at all about your child's oxygen levels )