My girl is obsessed. OBSESSED. Intervention may be knocking on our door at any minute. She cracks me up. I'll let the video speak for itself.
First of all, I have to say I am overwhelmed and humbled by the faithfulness of my praying friends. Talk smack or whatever about facebook, but when I posted this morning in need of prayers doing to some increasing anxiety, my friends came through in spades. I love each of you --- and I love how you have loved on our family and continue to do so through this journey.
And that's what this is: a journey. A marathon in some respects. Q's journey will never be complete - I'm sure I've mentioned that before. She will be monitored for the rest of her life - prayerfully these monitorings will eventually increase to every year or every other year instead of every 6 months. But since she's relatively fresh from surgery, it makes us all feel better to go every 6 months for the full monty work up.
Anyway, today was our cardio check up, complete with echo, X-ray, EKG, the works. First, I have to say I LOVE, LOVE, LOVE our new cardiologist. I think I said that the last time but she is so wonderful, compassionate, knowledgeable and she just "gets it". Plus, now that we are at the Sugar Land branch of TCH for appointments like this, it's almost like having a speed pass. Whereas in the Med Center you may spend practically a full day getting all of your "checks" done, here you barely have time to take a seat before you are being brought to the next area. So lovely. And they do non-sedation echos as much as they can for the younger ones. At the other office, no matter what, if you are under 3, you are getting sedated. They choose not to be patient and see if the child just relaxes for the 20-30 minutes and watches a movie. Instead they are given a vile sedation drug, which Q reacts horribly to, always vomits, and always wakes up irritated and drunk-like. Today instead, we popped in "Olivia" and the child could not have been more content to just lay there during the echo. What a blessing. In fact, she was such an angel the entire morning that no one believed me when I said that she was the more feisty/troublemaker versus Ryan : )
Ok, so to the update. Basically all in all, everything looked "okay". I say "okay" because it's not perfect. We didn't expect it to be but there were a couple of developments. Her last echo 6 months ago showed a narrowing of the branch pulmonary arteries (called pulmonary stenosis) but it was at a fairly mild level. This new echo showed a bit of a worsening of that from mild to moderate. In order to get a better picture, Dr. R. is recommended a diagnostic MRI to get a better picture of her heart and the arteries to ensure they are measuring the flows through those arteries correctly. The MRI isn't a huge deal except it has to be done under general anesthesia so they can get the best possible pictures without her moving an inch.
Here is a picture depicting stenosis if you want to check it out:
Depending upon the results, it could mean two things:
1. This MRI will set a baseline, if you will, of what level the stenosis is at currently. It will be something we will watch over the next couple of years and take action when necessary.
2. It could mean that the stenosis is concerning enough that it's time to go ahead and stent the branch arteries to open them up with a little balloon, much like you would do in an adult who's had a heart attack. The catheter procedure is something Q has been through before --- it's not super fun but it's a heck of a lot better than open-heart surgery. Basically a day procedure unless there's any complications and a couple of day's recovery. Not exactly thrilled that the potential for the stenting is earlier than expected but trying to not get too ahead of ourselves. Since we aren't at a critical juncture, we will schedule the MRI early this fall and go from there.
The best news of the day (besides the fact that Q is progressing normally as a toddler and experiencing no other issues related to her heart --- nothing slows this kid down!) is that they still expect the replacement of her bad pulmonary valve (requiring open-heart) to be years and years down the road. Probably well into her early to mid-teenage years. GREAT news because we don't want to start replacing things that she will continue to grow out of and need replacement every 3-4 years.
So, Team Quinn, we'll go from here. We are forever grateful for your prayers and following us on this roller coaster ride. One day at a time, one step at a time. Now this momma is going to finally try to get some sleep and let the anxiety roll of my shoulders for now. Love you all so much.
|Waiting for the doctor. All accessories present. We tried to have a little talk about how polka dots and plaids may not be the best coordinating items, but the princess insisted. The chunky yellow bracelet is a nice touch, no?|
Yesterday I finally had to break down and get Q a haircut.
I'm not gonna lie. I wasn't pleased about it.
Nor was she.
Yet for the last 10 months since her surgery, we've tried everything to grow out her hair and try to rescue the damaged portions from the month she spent flat on her back. But no amount of conditioner, detangler, or baby trims would help that large spot of dead hair grow. It had to go.
Not exactly how I envisioned my daughter's first haircut. I thought it would be when her hair was at least long enough to fit in a little ponytail instead of just barely able to slip into baby pigtails. But after talking about it for a week, I finally threw the kids in the car and took her to the salon before I could change my mind.
The lady cutting her hair? Well, let's just say I'm not a fan and really think she's in the wrong profession. I mean, if you work at a specialty KIDS hair cut place, you should probably act like you LIKE KIDS. She seemed angry. At least she didn't take it out on poor Q's hair. She actually did a good job while I held my breath and tried not to cry. Oh, and I was also busy holding down my daughter whom, to be frank, has the strength of a 5 year old. I'm not kidding. When she's mad, she is freakishly strong.
At any rate, Q has a tiny little bob now and all of the dead pieces are gone. I wish I had taken a before picture so you could see what we were dealing with but totally forgot. Now hopefully the hair will take off and grow - and we will have that ponytail soon : ) In the meantime, I bought her 3 new bows to add to her ever-growing collection. It made me feel better about the situation and girlfriend practically pranced out of the salon with a brand new bow in her now-fresh hair and the bag from the salon secured over her shoulder. Too big for her britches perhaps. But it was pretty cute.
A few pictures:
FINALLY, after Quinn and I recovered from our illnesses (lasting a good 10 days for each of us), we were able to have a wonderful summer weekend. Between house-hunting, church commitments, out of town visitors, out of town trips, and various other activities, our weekends this summer of spending just time together as a family have been few and far between. And summer has just flown by --- thankfully I might add. If you know me at all, 100 degrees and 200% humidity is not my idea of a good time. I grow tired of the endless sweating, the bad hair days, the long days of not really being able to play outside, and the all too frequent trips through the drive thru because I don't want to shut off the AC in the car.
But there's light at the end of the tunnel. The kids start preschool in about a month (2 days a week, whoo hoo!), August is halfway over, and football season is almost here. AMEN. And until football starts, we'll just have to settle for baseball. I am definitely not the biggest baseball fan but this past weekend we had two opportunities to hit up local games (FOR FREE!) and we actually had a ton of fun despite the oppressive heat.
Friday night was the Astros game - don't ask me who they were playing. No clue. All I know is that Matt's company had a little suite area set up for us with an open bar, tons of food, and an ice cream sundae bar. Babysitter, no kids, and the first time I had gotten really dressed in a week. And apparently we were on the "kiss cam" at some point - but we obviously were too engrossed in just hanging out that we totally missed it. I am not sad about this. I am still a little horrified that I was on a big screen at a baseball game. Me and television/video cameras do not get along and unless God himself tells me to get myself on tv, I will do all things to avoid actually being videotaped. I may have a few insecurities. Just sayin'.
Here are a few pics - horrible quality I might add thanks to the lighting and iphones, but at least it was documented:
On Saturday, we decided to load up the kids and head to a furniture store and do a little dreaming about new things we'd like to have for the house. We were pleasantly surprised that the store had little buggies/cars for the kid - score! However, our little busiest bug (guess who?) decided after 10 minutes it was much more fun to run around the store and exclaim "Wow! Wow!" over everything. And then scream like we were kidnappers anytime we came near her to rescue her from destroying something. After about 45 minutes, furniture shopping was complete - nothing in hand but it was fun to look.
After naps for everyone (oh, how I love a Saturday afternoon nap --- and oh, how apparently I love paranthetical exclamations and explanations today), we got the kids ready for their first Sugar Land Skeeters game. The Skeeters are the minor league team in our area and this is their first season. We've been meaning to go all summer and finally got a chance when our dear friends gave us their season ticket passes for the game. We ate at a local restaurant to kick off the evening, something we just don't do very much with the kids. It's usually stress-filled trying to control two 2 year olds and turns out not to be very much fun for Matt and I who are constantly running interference while simultaneously shoving food in our mouths. Not worth the price of admission. This time though they did so well and behaved almost like little angels. And I realized how truly far we've come in the eating out business when I looked under the chairs and saw very little mess and no spills. Success!
We headed to the game after dinner and made our first stop at the team shop for the requisite t-shirt purchase. Plus of course we had to purchase some bead necklaces for our princess. We found our seats after that, and wow! The stadium is beautiful and our seats were amazing - 3rd row up. It's such a fun, family event that no one minded that our kids decided 3 minutes of sitting was about 2 minutes too long, so we chased them up and down the stairs for the next hour while people laughed (lovingly, I think) at us. I am totally counting it as a work out because the next morning my quads were actually sore. Thanks, Q.
|Sitting for a second|
|Diva lining up and counting her sugar packets|
|Not sure why the SWAT team and truck was there but they didn't look busy so we asked for a picture with them : )|
|Inside the SWAT truck - busted!|
|ha - ooops ; )|
Sunday was church day as usual and I love how the kids exclaim every time we pull into the parking lot "Church, church!" I hope they always love going. More naps and then we had our final walk through of our new house - which was the first time the kids had been there. Seeing as how we don't have stairs in our house, I was happy to see they pretty carefully navigated those and had a blast exploring the rest of their new digs. I have to say for one brief cheesy moment I got really choked up seeing them sprint around the house. I hope they know while Momma certainly loves the new house for a number of reasons, I pray they will be happy here for a long while. I had the realization that they probably won't remember this current house where they spent their first 2 years, and this new place will be the house they recall from their childhood. Ohhh, memories.
All in all, it was just the perfect weekend. I know it seems fairly ordinary but sometimes we are on such a speedboat around here that we don't often have weekends like this --- where it was all about Matt & I having time together and our little family just enjoying each other with absolutely no agenda. I guess the word is peace. I feel at peace now. I feel like we are on this even keel right now in our life. Of course, I'm certain more ups and downs are coming in our life --- but for now, we certainly are living some "ups". And I'm trying to just revel in them as long as possible. Blessed would be another word. I know that word seems overused sometimes but there's no other word to describe it. I have an amazing husband who works so incredibly hard to provide for us, 2 children who delight me every day (even when they are frustrating the hell out of me!), and some really exciting opportunities that have recently come my way, both professionally and personally. We're just in a happy place right now. Thank you, God : )
Not that I have been posting regularly these days anyway, but I'm pretty sure this blog is about to be fairly dormant for the next few weeks as we move and get settled in our new place. Hopefully when the kids are back in school, I'll get better about catching up on my blogs - so much still to document from the summer and here comes fall!
And a couple more pics that melt me -
|Don't we all wish we could sleep like this???|
|My sweet girl at the doctors office for visit #2 after not improving - rosy cheeks but I love how she loves this new little tutu skirt. She would wear it everyday if I let her. There's no doubt this girl is ALL GIRL!|
From our family to yours,
Ha, NOOOOOOOOOOOO. Not me. Not even close. Not anytime soon.
My brother and sister-in-law are expecting little baby Anderson in February 2013.
I could not be more excited for them and am finally thrilled to be able to share the news after having to keep my mouth shut for the last 7 weeks or so. I hate secrets! But I feel privileged they shared the news with us so early on. Christina & Blaine, we love you guys very much and are so thrilled to be able to walk alongside you in this new chapter of your life.
I almost want to cry every time I think about it because it's my baby brother having a baby. I feel very fortunate that we've always been very close and have grown into best friends as adults. I can tell him anything without fear of judgment, I can call him at the most random times, cry on his shoulder, laugh with him, and now we can see our families grow together. He's such a special guy and even though I think he may be scared out of his pants right now about becoming a daddy, I know he will be a great one.
And we can't forget the momma-to-be. I feel so grateful to have Christina as my sister-in-law. We've shared some awesome memories and she is such a special person in all of our lives. She has one of the most thoughtful and generous hearts --- and her creativity is unmatched! That child is going to do the coolest craft projects, bake the best desserts and treats, and probably be a star tennis player. One thing is for sure, boy or girl, that's going to be a tall kiddo! (My brother is about a foot taller than me at 6'1 or 6'2 -- and I think Chris is right at 5'10 or so). I can't wait to find out what the little bean is! Stay tuned...
Speaking of creative, they put together this announcement to make it "facebook official". How freaking cute is this? Denver and Putty are going to quickly have their worlds rocked. They may actually have to become dogs instead of children.
Congrats again, y'all! Love you muchly. I'll try to keep my annoying sister and aunt tendencies to a minimum. Totally normal to ask Blaine or Christina every other day how she's feeling right???
I thought my post this weekend would be a quick wrap up of Q's 6 month cardiology appointment and my wrap up of the Brothers of the Sun tour which I've had tickets to for a good 5 months... but not so much. As many of you know, I get particularly anxious before any cardio work up, not because I think there's something wrong --- but heart babies are deceptive AND it just brings up a lot of the anxiety we felt about 10 months ago. Hard to believe it's been over 10 months since her initial surgery.. in some ways it feels like years. Yet, certain things can trigger memories which brings me back to those dark days in just an instant.
This has been one of those weeks. I have had a rotating fever since Sunday without really any other symptoms except a slightly runny nose and malaise. But it's been enough to just make me feel yucky, my mature word for the day. And it's still knocking me flat for the most party. At any rate, on Wednesday I started to notice a funny look in Q's eyes too and immediately went to the medicine cabinet to check on our tylenol and other assorted med supplies.
Years and years ago when I was growing up, my mom could take one look at me and tell me I was getting sick. "Meggie, I can see it in your eyes." I would fight her tooth and nail on it and it used to annoy me to no end. And yet, usually within 24 hours I was down and out with some assorted cold or virus. So to be able to look at my kids' eyes, now I know what she saw. And dammit if she wasn't right. You can always tell.
By Thursday, fever was in full effect but no other symptoms except her eyes just looked feverish. And then by Friday morning, she had extremely puffy and red eye lids, was breaking out in hives all over her legs, elbows, knees and ankles, and just was plain miserable. Out of respect for all of the sick kids at TCH, we cancelled our cardiology appointment and headed to our pedi instead. Of course, the majority is a virus that just has to run it's course, but the eyes were pink eye. Awesome. Ever try to give an already irritated child drops three times a day? Super fun. Now we are in Lysol/hot wash mode and trying to keep Q away from brother. Thankfully, anytime she doesn't feel well, she won't let her daddy out of her sight, so the rest of us are pretty much of non-interest to her.
And can I just say Matt is super dad of the year? He has hardly put that child down for the last 48 hours. He just cuddles and snuggles without ceasing with almost endless patience. We are all so lucky.
So why I am telling you all about a virus and illness which I'm sure that many of you all have dealt with in your own families? Well, strangely enough and knock on wood, but with the exception of mild colds that barely touched Quinn, and a half case of the flu that only annoyed her for half a day, this is the first time she has truly been laid out like this. No smiles, no nothing. And THAT brings back horrible memories of the surgeries and just scares me to death. The other night as she just sat on the coach with the saddest look on her little face, I was brought back to that recovery room after the first surgery went bad where I wanted so desperately to see any signs of hope or joy in my daughter's eyes. And there were none.
Now, I am not trying to be overly dramatic because I know that within hopefully a couple of days, my Q will be back. And we will all breathe deeply and move on with life. But my point is this, no matter how far removed we are from those scary and angst-filled days, my mind still has not fully recovered. And sometimes I wonder if there will be a day that a beep from a machine doesn't transport me back to the CVICU in an instant, or a normal virus that so many toddlers get, doesn't bring me such anxiety. I hope one day it will all be a distant memory.
One thing I am pretty sure we can always count on, no matter how sick, Q will always fully accessorize. This morning she was outfitted in a full pink tutu, bracelet, 2 bows, 1 barrette, and an all pink wardrobe. That's my girl. Don't know where Miss Priss gets it : )
This was yesterday. If you know my daughter, sitting still is not exactly her strong suit. This is pretty amazing to watch her not move for hours. It's also pretty amazing to see the recent pony tail that has emerged. Good grief, that's been a long time coming : ) Next up, pig tails!
|And how lucky are we to have this guy in our lives? Endless patience with the kids as soon as he gets home from work. Couldn't do it without you, babe.|
Next post will be a better and more joyful one, I promise. Just needed to get that off my proverbial chest.
Love you all,