It's About Time for that 11 Month Post

Well, I am probably the only one who really cares, but I totally missed my 11 month post. I had big plans for it, but it just never quite fit in the timetable. Everytime I would sit down to write it, I would either get rudely interrupted by a severe case of writer's block or pleasantly interrupted by my two little buddies. As it is, their 1 year birthday is now just about 10 days away. So I don't think I am going to do a full 11 month update as has been done in the past - just thought I'd write a little bit about what we've been up to. And I am going to do my best not to mention the dirty "H" and "S" words (That would be "heart" and "surgery"). We've had enough of that talk for a little while.

What can I say about 11 months? It's been bittersweet --- my babies are growing up each day and while we thrive on seeing them discover and learn new things, I desperately miss those sweet angel babies. Because let's face it: they aren't so much babies anymore - they are getting into that "toddling" stage. And maybe that's why writer's block would hit with a vengeance when I would try to do the post - a part of me just wants to hang on and never make it to that year post. But the train is coming and I can't stop it. That's a really bad metaphor but all I can think of at the moment. I can't pause time and let's face it, time is a sweet and precious commodity these days. Definitely not enough of it.

After a long 10 or so months of a non-cuddler/snuggler, Quinn actually has broken down and now tolerates my snuggles. Not for long periods of time, but sometimes I can catch her just rights and she will just lay in my lap against my chest and just chill. Can you imagine her "just chillin'"??? It warms my heart - and I'd like to think on some level she knows her momma just needs that right now.

Ryan, of course, still snuggles up with the best of them and lays the most still of both of them. My favorite is after he has taken a bottle and he just lays there on the floor with his head on the boppy pillow. A child has never looked so content. Fast forward one year, and I can totally see him lounging on the floor in his pjs catching Saturday morning cartoons. It's those moments that make my heart swell and break all at the same time.

But alas, these brief moments of non-movement do not last long enough. Before I know it, they are up and running everywhere. Well, not running but cruising, crawling, making their way through their "palace" (ie: our home, which is so not a palace, but completely belongs to them now, save for my one last place of solitude, my bedroom). We are for the most part, babyproofed. It's taken a little while to complete because while I love our open floor plan, it's not actually the most condusive set up for baby proofings. It took a few amazon purchases and trips to Target to find the right mix of large enough gates and the correct cabinet locks. Some of the stuff is still kind of "jerry-rigged" as we call it - places where the gates aren't quite long enough and we've been forced to tie them down with a colorful array of bungee cords.

We also have "an issue" with the door to our bedroom staying shut (thank you, awesome soil here in Houston) so we have an awkwardly constructed gate in front of that, too. Then of course, there are the blinds and shades. I have comprimised on lifting one shade because it allows them to see out in the backyard and quite frankly I was tired of picking it up constantly after they would yank it down. However, (and I am only saying this for right now), I am not comprimising on my blinds. I apparently think it's more fun to say "No, No, No" over and over again.

But my instict also tells me that the kids need boundaries and there are just some things they shouldn't bother. And they totally know the word "No." They get it. I have to almost hold in my laughter when I tell Quinn, "No, ma'am." because she looks at me, gives me this half little grin, then when I say "NO!" again, she looks at me with these pitiful eyes and sits her butt back on the ground and starts bawling her eyes out. It's quite the scene. For about 1 minute until she finds something unless she would rather do. Currently that involves rearranging my kitchen furniture and pushing chairs all around until she is satisfied that they are all completely in position (away from the table and not at all what I had in mind). Interior decorating is not in her future.

And I don't think you'll find our house spotlighted in any design magazines anytime soon.

And little Ryan - well, he is not devoid of getting into bouts of trouble either. He just goes about it much more quietly than his sister. His current favorite is to crawl bellyside under our coffee table or wedge himself between the couch and some other small space. Then he just cries and cries because bless his heart, he can't figure out how to get out. He is still less steady on his feet than his sister but improves every day. Some days he just can't keep that big noggin' up, and he will hit it on just about everything imaginable. It seems everytime I go to get him from the crib or pick him up from the living room, he has a new red mark, bump, or bruise. I suppose we should be lucky that he has only busted one lip (so far). And I wouldn't even call it so much "busted" as just "marked by 4 little teeth" when he attempted to bite through it after standing on a toy that wasn't meant to be stood on.

Wow, reading through all of this, I sound like mother of the year that just lets her kids run wild. I assure you that I do not - that of course I keep tabs on them at all times. But as many of you can relate, if you turn your head for just 30 seconds, something can happen.

And I think that's why I am so tired.

I was doing the math. The kids sleep from 7:30pm to 7am most days. They are up for only about 2+ hours, then back to bed to almost 11am. Then up again until about 2pm and down until 3:45 or 4pm (if I am feeling generous). And down again that night. So really, we aren't talking about an insane number of waking hours. But when they are awake - wow. It's an energy sucker. Matt would vote that the worst/longest window of time is the 10:45 to 2pm slot because it includes both a bottle feed and lunch feed and lots of playtime and clean up. I would say that 4pm on is the most difficult because at that point I am just ready for Daddy to be home.

Now that the waking hours are pretty much unproductive work hours, I have taken to waking up about an hour and a half before the babies to get in some moments of silence, eat my breakfast, and get a little work done. It makes for a long day but I find that if I don't have those moments of solitude, then I have the hardest time thrusting myself into all things "baby" once the 7am alarm sounds.

Ok, so I am pretty sure that 11 months has consisted of more than babyproofing and "no's" but I told you this was a somewhat unconventional post before we move into the sappiness that will be their 1 year birthday post in just a short time. So I am not going to get all sappy bappy now. I have to conserve that. And conserve my tears.

I suppose I could tell you about their birthday party but to be honest, it's going to be a pretty small event and save for cakes and a banner, pretty traditional. I see all of these posts out there about these crazy elaborate 1st birthdays that look nothing like the first parties we grew up with. First, I will say that I am jealous of the people who can put that all together and make it look like something from a magazine. I think most of them make all of that clever stuff too. Where they find the time and inspiration is beyond me.  This is not my department in the least. I am only somewhat gifted in "google" and "etsy" searches, and since I am precious on time and not made of money, for the most part I have resisted. It will still be cute though - hopefully.

 I do know that for sure we have cake. And I even found smash cakes for the babies that are vegan (note: we are not vegan in the least, but the babies aren't supposed to have eggs yet because of my allergy to it, so we went the vegan route - only for their cakes, not for the "adult" cakes). When I spoke with the "cake lady" she warned me that the vanilla ones do not taste as good as the chocolate because you can tell there are a few ingredients missing. Ummmm, just a wild guess but I am taking bets that R&Q just won't care. After months of stinky formula, veggies, fruits, yogurt, and meat - their first taste of icing should be what heaven is like.

We did break down and order 2 "big" cakes (the ones the adults will feast on - WITH eggs), one for each of them. While they won't remember their 1st birthday party, I always want them to know that it's a tradition. It's a special day for them both - and in the future, we will always have a cake for each of them of their own choosing. So why not start now? After all, we apparently are made of money. Or at least etsy, one step ahead, and smocked auctions thinks so.

Happy 11 month belated birthday post, Ryan & Quinn. We love you so much!

And another step...

After a very long time (almost 15 months of knowing about Q's issue), we finally got  to see our surgeon today. If you read last week's post, you will know we were introduced to him (actually, we barged in and introduced ourselves) at a benefit in Austin for CHD research last week. Yet, today's meeting was obviously drastically different, minus the passing of the red wine and bacon-wrapped quail apps.

Today we heard "the man's" thoughts on our daughter. Her surgery details, condition, and prognosis.

As I told my mom this afternoon, it's not so much the appointments that are so draining, but it's the build up time that saps the energy from you. For the past few days and evenings, all I have been thinking about is "this meeting". Eager to hear his thoughts, hopefully hear some positive words. Driving to the appointment today with my babies in tow (Matt was meeting us there), I listened to our Christian station, KSBJ, the entire way. Now looking back, I couldn't even tell you what songs came on - but I do know that every single one of them spoke to my heart. I love how God works that way. When I flipped to other stations, it was either commercials or "drunk in a bar" song - and I just kept going back to KSBJ and in a way, cleansing my mind and soul for this appointment.

I know some of you may be sitting there reading this and wondering: why all the build up for one single appointment?

Well, for MONTHS we have been told that this doctor is almost impossible to obtain, given his heavy surgery, research, and travel schedule. But he is the best. And darn it, I pulled every string I could, blessed every contact I knew, and barraged our cardiologist with endless reminders that Dr. F was the one for us. I just knew it in my heart.

And finally we were in the meeting. After Q's had her vitals taken for almost the umpteenth time - and was an angel throughout that process. And after waiting and waiting (you get used to it after awhile), I finally had to excuse myself and use the restroom. Well, as it always happens, he came in the room with his nurse right after I left. Oh well, I don't think they got past most of the introductory comments before I was back in there.

Probably giving a little back and forth on the whole UT v A&M thing, who knows.

He explained the surgery to us and how they would attempt to repair her specific defects. There will be parts that will be somewhat "routine" and other parts that will be more challenging. This time however, we didn't hear the words "lifetime repair" --- they are going to do as well as they can to give her a long-lasting repair, but that doesn't mean it's life long. And that's only if they work with her "original equipment". If she doesn't have enough supplementary tissue to do an organic repair, then they will have to bring in artificial material which she will grow out of --several times in her lifetime.

Surgery time is predicted to be between 6-10 hours long. It just depends how complicated it gets. He emphasized that they obviously don't run through surgery like that to get it under a timeframe. They will spend as much time as possibly needed to get the best possible results for Quinn. She will go on heart/lung bypass during the surgery and will need blood tranfusions.

Prior to surgery, we will check in a few days before and do a catheterization procedure in order for him to get a better visual of the defects prior to surgery. But again, as good as those images may be, the real decisions will come when they open up her chest (oh, and how I struggle to even type those words), and see exactly what they are dealing with.

We don't have a date yet, but he's in agreement with our cardiologist that sooner is better than later. Definitely before the yuck of the fall cold and flu season. Scheduling will be tricky as we have to coordinate with the cath lab for openings and then Fraser's being available. My gut is telling me August, but we'll see. I should hear in the next week or so and will keep you posted.

From there, the rest of what we found out --- anticipated she will be in the intensive care unit for at least 3 days - then prayerfully moved to the 15th floor where she can start recuperating. They anticipate at least a week there. It all depends on how well she starts to regain her "normal self" - feeding well, playing well, etc. Playing well won't be a problem. However, if it's feeding dependent, we may be there a month, ha!

I know some of this seems like repeat to those who have followed along our journey - and it seems that way to me too - but today was just REAL, you know? A big step. And we heard some things that we'll choose not to share, statistics, geneticas,  and all - and instead choose remain 100% positive that Quinn will rebound from this like a champ, she will again be the fiesty girl that we adore, and will proudly sport her "repaired heart" scar (of which eventually we will think of a clever name!)

I did ask, if all goes to plan, will she be able to dance, play soccer, all those good things that little girls want to do?

He said without missing a beat, "how do you know that she will even want to do those things? She may just want to lay and read books."

Well, either way is just so fine to me. Whatever her little blessed heart desires.

So anyway, friends --- this summer we make lots of memories. We live life. And to be honest, most days, I try not to think about this heart cloud over our head. We just bounce from feedings, to naps, to play, rinse, repeat. I certainly try not to play with her differently than I do Ryan. And in fact, I probably play a little more rough with her because she's just this rough and tumble girl. We'll say it again - our fiesty spirit.

And through this journey I continue to pray that a few things don't get lost. I know it seems like an awful lot of this blog is focused on Quinn --- and obviously we have Ryan, her older by a minute brother. It's a tough balance. He doesn't have multiple doctors appointments, he doesn't have a unique condition that requires special care. So obviously, there are some days where Q takes precedence. But I believe it won't always be that way. And we have our special time with Ry. Where Quinn has difficult feeding and half of the time won't take a bottle, Ryan will eagerly continue to lie in my arms and take his bottle happily. It's our snuggle time. He is fully capable to do it himself and has on many occassions, but lately I just have wanted him to feel special too.

We kind of have our own language and I can just look at him with these "knowing" eyes and he knows or feels exactly what I mean. It's weird - I can't describe it. But when his sister is potentially pitching a fit next to him in the highchair - I will just look at Ryan and kind of raise my eyebrows in a "What the heck?" look and he will just almost nod and then break into giggles. That's our time. Balance is tough with 2 kids, twins or not. Balance is tough with 2 kids, when one is sick and one is not. Bottom line. We're working on it.

But today at our appointment, we all trooped up to the doctor's office. As a family. Because we are doing this as a family. Not Mommy, Daddy & Quinn, but all four of us, Ryan included. He is going to be a part of her recovery process. He's going to have to show her the new tricks he learned while she's in the hospital - and throw out a few new words. She's going to want to catch up to "big brother" - and mark my words, she won't let this slow her down for long.

So that's it for now. I had big plans to get into bed with a tummy full of sushi and a brand new People mag, but felt I needed to write while the feelings were still fresh. Thankfully they are not as raw as they were this afternoon or literally this post would probably be all blubber. And in it's current state, it still may not make much sense. But now it is late and too late for proofreading.

We thank you all again for your prayers. I was thinking about our special prayer warriors who I feel wrap their arms around us on days such as today. We are so grateful to have such wonderful friends and family who know just when to reach out. Repayment for your kindess, support, and love, I'm afraid is impossible. We are in debt to you all.

Trusting His Plan,

Meagan

R&Q's "Coming Out" in the RR

Our other main reason for going to Austin this past weekend other than the Fraser's Friends Fundraiser was to attend Ryan, Quinn, and their cousin Ady's "coming out" party in the RR. Matt's mom was so thoughtful  to put this together for all of us and it was such a blast to see everyone. Many of them we had not seen since Matt's Dad's funeral, so needless to say it was wonderful to see them under happier circumstances. David must have been smiling down that day because the weather could not have been more perfect and the turn out was great. 

We decided to dress the cousins in matching outfits in hopes of getting some family pictures. Well, we definitely took lots of pictures, but of course as these things go, we didn't get ONE picture of all of the siblings, aunts, cousins, etc. Oh, well. We'll try next time. In the meantime, I had Quinn and Ady in matching outfits down to the bow (they are only 3 months apart) --- and they looked more like twins than R&Q do! ha. More than once during the party, I would walk past Ady and go, "Hi, Quinnie!" --- ooops, not my child.

Anyway, it was such a fun day and the babies really enjoyed meeting their extended RR family. Thank you, Barbara, for a wonderful time! Here (of course) are a few pics. I will try to whittle it down. The bad thing about our new camera is you can take pictures so quickly that I end up with hundreds to edit. And then I have a hard time deleting and picking my favorites. So I'll do my best on here considering I think I uploaded about 100 pictures to facebook yesterday. I am pretty sure more people are going to delete me as a friend today, or at least hide my posts :)

Quinn with Uncle Zebbie

Ryan and Matt's Aunt Janet

Mrs. Beard getting into the action

Quinn was not so sure of the swing. It kept her too contained.

Ummmm, enough?

Ryan and Zebbie

Aunt Emmy and Quinn

Great Grandma with Quinn

The obligatory snuggle picture from Ryan

Still for a moment

Naked babies

All these clothes and she is happiest with a diaper

Just being silly

Aunt Emmy with Ady & Ryan

Happy Ryan

No these aren't my twins - that would be Ady

Cousin Riley - who is the best with the babies!

Twins???

See! She's soooo good with them

Pretty Ady

Ron and Quinn

Not sure what Ryan is doing in this picture - too loud?

The Lott's with the twins - lifelong friends of Matt's family

Some of the crew

More of the crew

He actually wasn't even sleeping in this picture. He was playing dead.

Quinn, of course, never stopped

Ma with the babies

Three out of four cousins. Where is Ady?

Family pic

Riley and her YaYa

Mommy and Ryno

She's such a sweet girl.

Whew - how are we still standing? So much excitement!


Such a fun weekend! Thanks, everyone!

  

Going Cowboy Chic

This past weekend we made our way to Austin for a fundraiser for "Fraser's Friends", which is an organization led by our surgeon, Dr. Charles Fraser & his amazing team that raises money to "heal sick children with congenital heart disease". We were so excited to support such an important cause - and as a little bonus, have an opportunity to get dressed up "cowboy style" and get a night to ourselves. (Thanks, Ma, for watching the babies!!)

We had the pleasure of meeting our surgeon in person finally (even though we will consult with him this Friday on Q's case and he has "known" about her since she was in utero). I was super impressed with him on a personal level. I mean, we've heard all about his accolades and achievements in pediatric cardiology - but to actually meet "the man" (besides The Man!) was pretty cool. He was amazingly down to earth, gracious, and just extremely likable. No arrogance, no airs. Just a very nice, normal man. Who is going to work dilegently for at least 8-12 hours to fix our daughter's heart and allow her to lead a normal life. Wow. I may have shed a tear or five. I know you are shocked.

 Anyway, besides seeing Dr. F. and hanging with my dear friend Katie and her sister, we met so many other wonderful people, all of whom offered advice and contact information as our surgery date grows closer. And the food, um delish. The entertainment, fantastic. The weather, absolutely gorgeous for a May Texas night. All in all, it was an evening to remember and we are so thankful to have been a part of it.

Below are a few pics.

Our cowboy chic attire. I can't believe I didn't get a pic with my boots!!

With Dr. F - he looks like a giant compared to us. He was also wearing a UT cowboy shirt. Matt tried not to hold it against him. However, I think my Dad would be pretty proud of his alum.

Katie, Emily, and Me.

Sweet Katie.

Enjoying the evening. It was so gorgeous on the property once the sun went down.

Heading home. Well, first a stop at Whataburger. It was late & we were hungry again. And Matt didn't know where a Taco Bueno was - what's up with that???!!

Next post: our other reason for the Austin trip -- a "coming out" party for R&Q and their cousin Ady (who is about 3 months younger). Whew - can you say whirlwind weekend!!!

More New Vocabulary Words

One thing I can say for sure since this whole CHD thing came into our lives --- I have added a plethora of new words to my somewhat limited vocabulary. Everytime we go to the doctor or have an echo, I learn a few more. Yet some of them still sound foreign and no matter how hard I try to research them, I still can't totally make sense of the full picture.

I suppose this is just one reason of many that I am not a doctor. Or a cardiologist.

Anyway, we received the results from Q's pre-op echo from last week. For the most part, it was unchanged but they did pick up two new things. Two things that won't necessarily change her prognosis, but two things that will make surgery a little more difficult.

The first thing noticed (but not unexpected) was an additional blood vessel that has formed off of her PA. Basically, after a number of months of the body being deprived of a full amount of oxgenated blood, it starts to form and dilate other vessels to help with the flow. For Quinn, it's not a huge deal - right now they only see one. Some kids have a ton of these little vessels and it becomes more difficult to repair. They should be able to go in there and just tie off that one vessel and be done with it.

The second new discovery was how her VSD lies in her heart. In all of her previous echos, her little heart was still too small to see how the VSD was orchestrated. We learned with this echo that it is "doubly committed". I don't understand exactly what that means, but basically the VSD lays below both the Pulmonary Artery and the aorta and affects both - and affects their output to the left ventricular side.

(Oh, my gosh, forgive me with how I am writing this - it is all just so complex. Truly, I need it to be drawn out for me because hearing it described over the phone is very difficult for me to understand. I can't even take proper notes over the phone - especially if it involves writing down numbers or letters. I invert them and later have to figure out what I wrote. Forget being told about the complex anatomy of a heart).

Anyway, as we've mentioned before, Double Outlet Right Ventricle heart disease only occurs in less than 1% of all heart defect cases (1 in 100 babies have a heart defect). To break that down even further, in that less than 1% DORV patients, only 5% of those children have doubly committed VSD. So, what was already a rare defect actually gets even more rare.

We never like anything to be super easy.

The good news is that nothing really changes with her treatment plan (surgical repair) or with her prognosis of living a healthy and normal life. These new details may complicate her surgery some but shouldn't affect the outcome.

The one thing that we still don't know -- and won't know until the surgeon is in there -- is whether this can be a one-time, lifetime repair or if she will need a replacement of some of the parts, thus leading to a few more surgeries. As my cardiologist said yesterday, it will literally be a "game time" decision. If you know me at all, you know that "gametime" decisions do not sit well with me. I am a planner. I want to know before the fact so I can make my peace with the situation and move on.

When I think gametime decisions, it makes me think of soccer way back when. How sometimes I would think I was the starting midfielder, and then there would be a "gametime" decision and I would be on the bench. I wasn't so much upset that I wasn't playing, but I was upset because my plan had me starting. I don't know if that makes sense at all actually, but the point is I like things in nice, clean lines. I want to know the gameplan - we will go in, do this, repair this, move this, suction this, and be done. 

Yet that isn't going to be the case and I HAVE to be ok with that. I HAVE to trust that the surgeons are experts at these decisions. And I HAVE to trust that God will enable their minds and hands to make the wise decision. I know He is the master of these gametime decisions. Ironically, my pastor's sermon this past Sunday was all about dealing with the fear of uncertainity, of the unknown. One main point that he drove home was that God is the king of dealing with chaos. He shines brightest in times of chaos. Thank goodness, because I am a total wimp in chaos.

So Quinn should be presented on Monday (it was supposed to be this past Monday but our surgeon was at a conference). We will know then what his thoughts are. The plan is still July or August surgery. I am so thankful that my cardiologist continues to encourage us to live our lives. To go on vacation. To go out to dinner. To allow Quinn to be around other people. He has complete confidence that she is going to be ok. And that means the world to me.

My emotions swing back and forth like a pendulum whenever we have "Quinn updates". Part of me is elated that we will get the big part of this behind us. Part of me is scared to death. Part of me just wants to ignore it until surgery day. And part of me can't stop thinking about it.

I've had some people tell me that they don't know how Matt & I have seemingly dealt so well with this situation. I am flattered by those compliments, but at the same time, part of me wants to shout, "It's a big fat lie. I'm not ok with this." They don't see the dark moments when all I want to do is cry for my little girl. Bawl big fat tears that she has to go through this. My mind instantly goes to surgery day when they take her away from me and out of my arms. She is going to KNOW that something is up. She will be old enough at that point to feel our mood, to smell the hospital, to recognize strangers taking her away from her momma and daddy. And she won't understand. Then I think of Ryan, home without me for at least a couple of weeks. I'll be able to come home for moments here and there, but by and large, I will be away from him for awhile. And he'll be separated from his playmate and fellow troublemaker. But thankfully, years and years from now, while we will still remember, they won't.

So we try to be strong for our little girl, for our family. I try not to let the dark times overtake the sunshine, because darn it, there is so much to celebrate in our lives. The kids are thriving, they make me smile every day, we have good jobs, great lives. We have so much to be grateful for. Anyway, I wasn't planning to get all morose and sad-sounding in this post. Sometimes you just have to get it out.

Grateful to you all for reading about our journey and your continued prayers. We will keep you posted on a surgery date as soon as we find out.

In His Hands,

 

Babes in the Bath

Bathtime is just another form of playtime around our house. Ryan is especially loving the water and splashes around constantly. Quinn just likes to grab every toy she can and crawls from one end of the tub to the other. Anyway, so we can appropriately embarrass the children later on, we took a couple of videos last night.