Quinn Update, Part 2

This past Friday afternoon Matt and I met with a fetal cardiologist at Texas Children's to confirm Quinn's diagnosis and hear about her prognosis and treatment. It was such a long day and included a 2 hour ultrasound, but we left knowing a little bit more about what we are all up against.

Her diagnosis has changed from Tetralogy of Fallot to "Double Outlet Right Ventricle with Pulmonary Stenosis". I think there's actually another word attached to that last diagnosis but at the moment, that's all I can recall. It's not really good news or bad news that the diagnosis has changed. They are sort of in the same family and treatment is somewhat the same. The best news was that our new diagnosis is not usually associated at all with genetic or chromsomal disorders like Down's - so we really don't have to worry about that now which is a massive relief to me.

This is just a defect that happens. No reason, no cause, no explanation. It just happens. It's also very rare -- while TOF makes up about 15% of all congenital heart defects, DORV accounts for less than 1%.

The good news is that Texas Children's is rated #3 in the entire country for pediatric cardiology so we literally couldn't be in a better place. The doctor who met with us on Friday was absolutely amazing. I've met with a lot of doctors over the years and I have never had anyone that showed so much compassion and wisdom -- and spent over 3 hours just with us. She wasn't in a hurry and took her time during the ultrasound to make sure they accurately identified Quinn's problems. It was a huge blessing and relief to us to know that she will be in such good and capable hands.

Once they completed the ultrasound, she outlined and reviewed everything with us. When we walked back to her office, she warned us that it was going to be a lot like Biology 101 and that's when I knew I was in trouble. Science was never my strong point - and anatomy especially was not. And I don't know about you, but my Biology class never had anything about "pulmonary stenosis with arterial defect". As I am reading more about this defect though, these words are becoming more and more second nature and I'm sure that will only continue.

Anyway, bottom line is this...we don't know exactly what we are facing in terms of her treatment. As specific as they can get on the ultrasound (which is absolutely amazing to me that they can drill down to arteries in a 1.5lb fetus!!), the unknown is how she is actually going to be when she is born. Every child with this defect is different. Some do well after birth and some need surgical assistance almost immediately following.

Potentially, Quinn could need to have surgery at 1 day old to put in a shunt to open up the pulmonary artery. Or she may just be watched closely in the NICU and if she does well, head home with us almost on a normal time frame. What is known though - she will have to have major open heart surgery when she is just a few months old to correct all of the defects (there are 3 or 4 that make up this one defect). And because of the type of repair that they do, most likely she will face at least one more surgery at elementary school age to replace some of the parts they use. The doctor promised us that Texas Children's will become our home away from home.

The main thing right now is that we give Quinn the biggest chance to survive her condition --- and that means keeping her in utero for as long as possible. We need to get her to full term and a healthy weight. Premature is never good but in her case, it could be devestating. The scary thing is that obviously with twins and a relatively small mom, it's going to be hard to get them to the 38 weeks. All I can do is keep resting as much as possible and eating lots of good food to fatten up the kiddos. The rest is in God's hands.

And that pretty much goes to everything. All of this is just about 100% out of our control. God is in control of this one. And thank goodness. Because I think he understands Biology 101 much better than I do.

In His Hands,

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Quinn Update

I'll get straight to the point tonight -- after waiting 2 1/2 hours to see the doctor today, we did discover that Quinn indeed does have some sort of congenital heart defect. Obviously not the news we were hoping for - but at least we know something now and aren't completely in the dark. I deal better when that "unknown" factor is removed.

The good news out of this whole yucky situation is that if your child was going to have a heart defect, then this is the one to have. Meaning it is usually 100% correctable with surgical intervention. The surgery generally takes place at 6 months old & typically the children go onto lead perfectly normal and active lives. That being said, my little girl is going to have to require surgery. That just breaks my heart into so many pieces I can hardly stand it.

However, we are also really fortunate to be close to Texas Children's here in Houston so we will have a fetal echocardiogram there next week. One of my very good friends who works at Texas Children's was able to help secure me an appointment with one of the top fetal cardiologists that day. What a blessing that is! I know Quinn will be in good hands once we get to that point. But anyway, having the echo will allow the doctor to map out the defect and create a plan of action. Thankfully, the doctor meets with you right after the echo so there is no waiting for results, etc. So next Friday we'll know a little bit more which will help shed some light on what we are going to face.

My care will also be transferred downtown to a high-risk perinatal group as opposed to my regular ob. That part makes me pretty sad because I have such a close relationship with my ob and she knows so much about me and my history. But we have to do what's best for my health and for the little ones -- they prefer me to be close to downtown so in the event Quinn is pretty ill at delivery, they won't have to airlift her out of Katy or anything. So hard to believe that I am typing those words - talking about airlifting my child & major heart surgery.

I don't think it's quite sunk in yet. Maybe I am still in shock. Either way, I sure have been funky the past few days and I must apologize to all my friends who probably think I am the biggest space cadet. The head has been in other places.

Anyway, just wanted to give y'all an update. Thank you for the prayers. One thing is for sure, I have seen God's hand move in all of this chaos.

I firmly believe that we are in Houston for some very specific reasons - 4 1/2 years ago I thought my world was ending when we lost everything in K -- but now, I realize that it was all part of God's perfect plan. Who are we to question that?

Matt & I have such an amazing support system here with our church, friends, and work. We couldn't have made it the past couple of years without all of them. And now to be in Houston, one of the leading medical metroplexes in the nation just when you need it the most for your child --- well, I know God is behind that. And He's behind things like putting my friend Katie in my life who can assist us with navigating the maze down at the med center & getting familiar with Texas Children's and providing support. And He's behind what prompted me today to stop the doctor in her tracks when she was about to give the babies a clean bill of health and ask her "so everything's ok with her heart??" - when it wasn't. (Note: She went back and re-ultrasounded the heart and found the problem 10 minutes later --- guess who's NOT my new high-risk OB???)

(Goodness, one thing that all of my medical issues have taught me --- be your own advocate, listen to your inner voice that's telling you when something's wrong, and then stand up and say something. Doctors are human and they make mistakes. You know your body and your babies better than anyone. Okay, jumping off the soap box now)

Will keep you guys posted. Love & appreciate you all. God has heard your prayers, that much I know. I couldn't have been as calm today without them for sure.

Oh and by the way, other than the heart issue, the babies look GREAT. Growing even ahead of gestation which is awesome for twins. And Ryan, poor little Ryan who's been kind of left out the past few days, is doing amazing. I have no doubt that he is going to be such a protector for his baby sister. And then she will likely torture him relentlessly like I did with my brother :)

Have a wonderful weekend, y'all!

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Would love your prayers...

So I hesitated to make this post today because I really don't have a lot of information and I really didn't know how to say it all. However the more I think about it, I have been so grateful to all of you for all of your love, support and prayers this past year --- and I would love for you to say a little prayer for all of us tonight.

There is a whole long story that goes with this but I will keep this relatively brief (I said "relatively". I still have not learned how to write in a "reader's digest" verbatim).

Last week, I went to the doctor to check out my cervix and cerclage to see how everything was holding up. They went ahead and did an anatomy ultrasound again (where they check out all of the babies' pieces & parts) even though I had one at 17 & 21 weeks, which was just one week prior.

All I really found out at that appointment was that the cerclage was looking good and doing it's job and that my little girl was moving around so much that the tech called her a little "toot". She also told me not to be surprised if they scheduled me an appointment with some perinatal specialists b/c Quinn was so active that it was hard to read one part of the ultrasound on her heart.

So when I met with my dr's assistant right after, she did recommend the appointment and obvioiusly I wasn't surprised or even really alarmed since it seemed to be just a lot of movement that was causing the tech difficulty. (My dr was out of town)

Fast forward to Monday afternoon - 6 days post ultrasound. My doctor was back in town and reviewed my ultrasound & apparently a note from the tech jumped out at her. The tech questioned if maybe there was an issue with Quinn's heart -- specifically one of her vessels leading to the heart.

So I got a call yesterday to schedule an appointment for a fetal echocardiogram as soon as possible. The nurse mentioned the word "heart defect" and I just about lost it. Never were those words mentioned to me last week. Chalk it up to bad luck, bad communication, or both -- either way, it doesn't matter because facts are facts and she needs to be checked out.

I really don't know much except what I wrote above. I spoke to my doctor in person yesterday and she really couldn't say one way or another if anything was definitely wrong because she didn't see the ultrasound. She's just going by notes left by the tech and is understandably being very cautious. It could be nothing - and she indicated there was a decent possibility of that - or it could be something. We'll find out more soon. My appt for one of the ultrasounds is on Thursday morning - even if that one is clear, she still wants me to have the echocardiogram which will be next Tuesday (one week from today).

The good news is that Houston is for sure the place to be if you have medical problems. They have referred me to one of the best pediatric cardiologist institutes in the world at Texas Children's. Not that I really am eager to take advantage of their world-reknowned services.

Since I don't really know what's wrong - I don't really know how to tell you to pray except for this. Please pray that this is nothing, a blip, or freak incident. If it is something, please pray for the wisdom and knowledge of all the doctors and techs that will be involved, pray for complete healing for Quinn, and selfishly I ask for you to pray for me -- for my anxiety to decrease so I can keep these babies in a stress-free environment.

I have to admit this has really shaken me. I think it's normal to worry when you are pregnant but now that those fears may be realized ---well, I've kinda been a wreck. Over the last 24 hours I have realized how much in love I am with these kiddos. Of course, I knew that I already loved them - but now knowing that one of them may be in trouble just brings me to my knees. I now have had a small, small taste of what all of you parents feel when your child is ill, hurt, or even just sad. Your heart aches, your stomach turns, and "worried sick" becomes a very true meaning phrase.

Anyway, we would just appreciate any prayers that you can throw our way. Will keep you posted on what's happening as soon as I know more.

In His Hands,

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And Quinn And Ryan :)


We have a nursery???

Yup, we have an official "nursery". Sounds so strange, huh? Well, at least to me it does!

After the events of a couple of weeks ago and the determination of bed rest, my mother was wonderful enough to drive down from the Big D and help us start making sense of all this baby stuff.

Cribs and furniture arrived and needed to be put together and the bedding that I ordered had been gathering dust in a back closet.

So my mommy and hubby spent all day Saturday re-touching paint and hammering things into place while I lay on the bed and couch somewhat princess-like.

And when they were done...it was just what I envisioned. It's still lacking decorative elements and letters for my little girl, but all in all - it's coming together.

So when we got the letters, we only had a boy's name, Ryan. Now we officially have a little girl's name as well. Letters will be bought this week & I apparently am going to be crafty and paint them. We'll see how that turns out.
I am about the least crafty person you know --- when I was a little girl, every year I would ask for some new art set, pottery wheel, easel for Christmas. And every year, it would be abandoned by mid-January when I rediscovered that crafting was not my thing. But to buy these letters all painted and designed is about $12-$15 per letter - even I won't spend that. I plan to take the money I save by my do-it-yourself attempt and buy a chocolate rug for the nursery. I don't know if Matt knows that part of my plan yet, but he will soon!
Oh - so the names... officially... drumroll, please....
Ryan David Greenwood
(David being Matt's father's name & Greenwood is after a close friend of my family - that's a whole story for a whole other post)
Quinn Eugenie
(We wanted something short for her like Ryan and something that ended in the "n" sound. Eugenie is a family name on my side that has been carried through god knows how many generations)
We are so excited to have the naming process complete. And God bless those who can keep the sex or the names a secret until the big day. I wasn't blessed with that sort of patience.

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