Yup, Home Again

This morning I drove back to the hospital to relieve Matt - and got a very welcome surprise present... the news that we were being discharged today (Weds, I think :) ) Quinn's xray was about 90% normal so they decided that it was time for her to go. They feel the rest of the effusion will clear up at home and her pain has definitely decreased in just the past day. I was a little (ok, a lot) nervous to bring her home again, given the pain I saw her in Sunday. I would spend 40 days and nights in the hospital for her to not hurt like that again. However, they assured me she was ready --- that it was actually going to be more dangerous with her weaker immune system to just hang out in the hospital getting "back to the business of Quinnie". We didn't want to risk any secondary hospital infections just by the sheer number of people caring for her.

So we are safe and sound at home --- she did so well coming home and barely moaned. And once we got home and she saw her Gigi, she was all about it : ) She even found time to be a little playful. We took the kids out in their little Tykes cars for a spin around the block & she look refreshed and pleasant to get the fresh air! We haven't seen many smiles yet and certainly not any giggles but we are trying to be patient. It seems almost every hour we see an "old" part of Q emerge. Tonight she sat her in highchair and casually pitched her sippy cup off the tray just because. And I cried. Why? Because that's what the "old" Quinn did -- the newest, hurting Quinn didn't have the energy to toss sippy cups. So for once, it didn't even bother me - it just made me happy. How weird is that??!! Treasure the little things as much as they may annoy you :)

We are still, no doubt, in for a long road. Recovery for Quinn is not in days, but in weeks. But prayerfully each day should be better than the last. We will pray for no more hiccups and no more pleural effusions. Once was enough, thank you very much! And now this very, very tired momma & daddy are off to bed. Love you all, thank you for your prayers.  Blessed beyond measure,

The Latest... What Day Is It???

Y'all. Seriously. What day is it?

I believe it's Tuesday. Don't ask me to tell you the day of the month. You could say we are in a bit of a fog right now to put it mildly. So I will attempt to be as coherent as possible on this update. Then we'll all say a collective prayer that my son is in a mood to take a LONG nap this afternoon so I can shut my eyes in my own bed for a minute.

First, thank you ALL so much for your wonderful message, texts, emails, and facebook posts. Overwhelmed with the love for our little girl. I mean, we think she's a pretty special one but it's oh so lovely to know that we have so many people who have taken the time to pray for us.

Second - here is the latest.... I can't recall where I left off on Sunday but I believe it was that we were being checked into the 15th floor (back where we did post-op recovery once we were out of the CVICU). Kind of like going home - except to a home that you don't want to visit ever again :) It was nice to see some friendly faces that remembered us though.

Anyway, yesterday (we'll call it Monday), the doctors took a "watchful waiting" approach to her care instead of going in immediately to drain the pleural effusion. Unfortunately, they didn't do an awesome job of actually letting us know they were in a watchful waiting pattern, so there was a poor resident that was the recipient of a little mommy wrath and irritation of the non-communication late yesterday afternoon.

You may want to pray for her. I feel a little bad about my tone with her but bottom line, I am there for my daughter and not to make besties - I feel like I could have been a little sweeter though. Maybe pray for some patience for me, too.

Monday morning she was taken for another echo to check out her heart function and another chest xray. Fortunately, it seemed the effusion was less involved than on the previous day. So they decided to continue with the IV Lasix (diuretic - now given 3 times daily at a higher dose we were doing at home). The hope was the meds would continue to dry up that effusion. She also remained on the Motrin every 6 hours and didn't require any additional morphine save for the single dose given in the ER on Sunday.

Yet I was with her all day yesterday and last night, and the child just moaned and moaned almost 100% of the time if she wasn't sleeping. And she wouldn't really sleep in her crib - only on me. So we had some good snuggle time and watched Serendipity on Lifetime. She didn't eat breakfast or lunch, except for a few crackers. She was actually interested in drinking milk and water so that's good. Anyway, after speaking (talking firmly) with the resident, I finally got to talk with the attending who ended up prescribing her some Tylenol with Codeine again. We gave that to her about 7:30pm and she started to perk up and stop moaning. What a welcome relief.

 By the time I sat down to eat my dinner, she was totally fine with sitting in my lap and pulling out BBQ baked lays and stuffing them down. Who knew the child like BBQ baked lays??? I tried to sub them out for a healthier cracker but she pitched that on the floor. Whatever. At this point if the child wanted to eat a gallon of Blue Bell, I would let her. Anyway, the chips gave us a fun distraction for about 30 minutes as she would continue reaching in the bag and passing them to me after she was done. I even heard some babbling. All good stuff.

We tried to hit the hay around 10pm, but pretty sure she didn't fall asleep until 11:00pm, only to be reawakened at both midnight, 1am & 4am for meds & vitals. Uggh. I surrendered sleep at about 5am and walked to McDonalds for a break after she went back to sleep.

So after an early morning xray, this is where we stand: the effusion is looking about 75% better than it did Sunday and marketedly better than yesterday. Her echo came back completely normal so there is no worries that the repair isn't holding up or that she has some sort of infection around her heart. Praise God for that. Her labs are normal, so there is no signs of infection at all.

So this is where things get a little confusing. If we had an infection, we could treat that easily with antibiotics. And while the doctors don't doubt that the fluid in her lungs was putting heavy pressure on her diaphragm and causing pain - they still don't think that's the only cause. (In fact, I found out later that the fellow who met us in the ER on Sunday told our attending that he had not seen a baby in that much pain in a long, long time. Awesome - we love to be memorable)

So this is what they think may be another cause - she has been on the Motrin for a LONG time for a baby, almost since 2 days post op. That's a lot of irritation on the stomach, especially if the child isn't eating great. So if the effusion made it painful to eat, then giving her the motrin was just exacerbating the issue. Basically, they think there is a good chance she has a good-sized stomach ulcer, or at the very least, a raging case of gastritis. The rest of her symptoms and behavior match with that.

 Unfortunately, the only way to see if she has an ulcer is to go in endoscopically - not something the doctors want to do at this point because it won't change the way we are treating her. Sooo, long story short - we pitched the Motrin this morning & she is now on Zantac to help counteract the irritation. Yet, it still will take a couple of days to tell if that is working and actually helping the problem. The hope is that between continuing to dry up the fluid with the IV (vs going in with a chest tube - which now there isn't even enough fluid to make it worth while - praise Him for that), release that pressure, ease the stomach discomfort, and provide pain relief through the Tylenol 3, then we should be on the right track.

Tomorrow a.m. they will do another xray and check out the fluid in the lungs. Then we will examine her pain levels again, discomfort, feeding, etc and go from there. At the minimum, I think we are looking at 2 more days in the hospital IF this plan works and is the cause of her pain. If it hasn't helped, then we start looking at other causes. As someone who likes to plan ahead and research, I asked them what those may be and they wouldn't even go there. Probably better than me sitting her googling everything during Ryan's nap.

Interestingly enough, our cardiologist (who was out of town from Friday to today - perfect timing), was shocked that the resident who discharged us last Monday sent us home with 7 days of Motrin instruction and no Zantac. It sounded like (without throwing that resident under the bus) that it's almost protocol to prescribe Zantac to a child when taking Motrin for that long.  Hmmmmm. We'll address that later but if that turns out to be a part of this equation & something as simple as an antacid could have helped her discomfort, then I will be LIVID. Right now, I can't focus on anger or blame because that doesn't help Quinn. I just want her to feel better and get back to the business of being Quinnie. And the pleural effusion would have happened anyway (it just sometimes occurs after these long heart surgeries - not totally rare)

So anyways, confused? Yeah, me too. So we know some things but it's still somewhat of a mystery. However, what is not a mystery: we are 100% focused on getting Quinn better and we pray every day to see just a little more of a glimpse of our spunky gal. Matt and I are back to passing each other in the morning as we take our 24 hour shifts at the hospital with a crossover for about an hour as we debrief each other on the respective children and their nights. That way one of us is always home with Ryan (who still obviously needs us as well) and that person is getting at least one good night sleep.

We have faith that this will prayerfully be a short-lived setback. We pray that they will find the answers soon or confirm what they suspect already. It's quite a tenuous balance in caring for this age child - they can't tell you where they hurt so a lot of it seems like "we'll try a bit of this, a bit of that". I told the attending yesterday that I don't envy her job one bit - you have to have such a special gift to determine what's wrong with a non-speaking child. No thank you.

So that's where we are - hmmm wonder if it even makes sense. Anyway, Matt is "on duty" now and I'll switch out with him tomorrow. And we'll just keep doing it until Quinnie can come home. As I was feeling a little sorry for our family the other day, I remembered all of the things we need to be grateful for --- we both have bosses who understand that our child comes first right now. They have been amazingly compassionate. We have so many friends that continue to support us & a church family who is still providing us much appreciated meals every other day. And I have a wonderful husband who is the most amazing father in the world. I am ultimately grateful that he gives me time to rest and has no qualms about taking his turn at the hospital. In a perfect world, we would all be up there together but it just doesn't make sense right now.

Ok, enough of the ramble jamble. Hopefully my next update will be a good one & maybe one with a potential for a discharge date.

Love you all,



Another "Hiccup"

I'm going to try to keep this short. It's late so I probably won't meet my typical 1,000 word post. Be grateful.

After a VERY tough week and even tougher weekend, Quinn was not improving. In fact, she was kind of on the downhill. Didn't want to eat, was not interested in walking around, playing, or even comforted when we held her. In the coming days, I will go back and question my mommy instincts over and over - but I knew something was not right on Friday. I even called the cardiologist fellow to check in. But she was not running a fever, and deep down a part of me was just praying that we were just one day from turning a corner.

Not so.

I finally listened to my heart and took Q to the TCH emergency room this afternoon. I cannot speak highly enough of the staff there that had us in and out of triage within minutes and in a private room in 5 minutes so that she wouldn't be exposed to any ER germs. 

They ran multiples tests, did a bunch of blood draws, had to put in a catheter to collect urine (poor, poor sweet Quinn), and had a chest x-ray.

No less than 10 minutes after the chest xray, the cardiologist on call came in.

The diagnosis: Quinn has "pleural effusion" --- basically she has this large pocket of fluid in her lungs that is pushing on her diaphragm and making everything extremely painful --- which explains why she couldn't be comforted, even in our arms.  It's not necessarily a rare complication of her surgery but one we weren't exactly aware of.

The good news: her labs are perfect - no signs of post-op infection, which was really on my mind as I was driving her there in the pouring down rain. Her WBC is completely normal, as was everything else.

So basically this means we are checking into TCH for a few more days - Matt is there now (I had to come home to get Ryan from the sitter) and will rejoin tomorrow morning. They will likely put a chest tube in tomorrow morning (through her rib cage) to drain the fluid. The chest tube will stay in place for approximately 24 hours, then they will remove it, observe for 24 more hours and then hopefully & prayerfully we will be home.

I was questioning if I would even post this --- but there are soooo many of y'all who have prayed so faithfully for Quinn, I wanted you to know. If you have any extra prayers left :), please pray for these things:

1. Release from pain - she was miserable. They ended up giving her morphine to ease the pain and right now she is comfortable.

2. That tomorrow's procedure will be without incident. We specifically pray that they won't have to put her under a general, but instead do it locally with sedation. 4 breathing tubes in less than 2 weeks would be sooo much on her little body.

3. Please pray that this is the only issue. Pray that Matt & I can continue to balance and roll with what's coming.

Love you all. More to come later.

Quinn's Heart Journey - A Picture Post

 I had planned to be more intentional about taking pictures through Q's journey at the hospital but exhaustion won out and I didn't take as many as planned. However, here are a few. There are a couple that I won't post that we took right after her surgery - I want to respect Q's privacy in that respect and let her decide later on if she would like to share them. They are a bit scary with all of the tubes and whatnot. So if I am still blogging in 16 years or if blogging is even still around, maybe we'll post them then :)

Until then, they are going in her heart journey box. Btw, for all of you who sent me pictures of you in your Team Quinn green & those that were posted on facebook, we plan to print them out and include them in her box as well. I say "box" because the chances of me actually scrapbooking her journey are about slim to none. Scrapping is not my forte for sure. That's why I write :)

The night before surgery - we dressed the kids in their matching Halloween pjs from Gigi. This glows in the dark which is a bit freaky!

The family pre-surgery

Best friends for life

Ma and her sweet Quinnie hugs

Love our Ma! Thanks for being here!

Quinn being silly. She likes to put her finger in front of her nose and talk through it. Daddy taught her that little trick.

Ryan dancing

Dancing all around - slight embarrassed at this picture but this is life around our house normally :)

 

Morning of pre-op, September 26th. Quinn looked precious until she puked from motion sickness all over her special heart outfit. Then we both smelled for the rest of the day. True story: most of y'all know that I have a strong affinity for Diet Coke. Well, since we had to be at the hospital so early that morning, I got up at 4:15am and immediately headed to the refrigerator for said diet coke. Grabbed one, opened it and guzzled for a few seconds until I realized I had made an awful mistake. Apparently in the dark & in my sleep deprived state, Diet Coke and Budweiser 55 look fairly similar in silver and red cans. Now, I am not a beer drinker typically & I am certainly not a 55 beer drinker at 4:00am. Yummy. I'm surprised I'm not the one who didn't throw up on the way to the hospital.

Sweet cookie bouqet for Quinn (and us and our doctors and nurses!) from Matt's wonderful family friends, the Culpeppers and Steven's. So fun to have that delivered!

This was 1 day post op. Looking more cuddly and comfortable without the vent.

Sweet girl - you'll notice the breathing tube is out and she has her paci under her oxygen mask :)

Saturday after surgery (I think). We got to take a ride in the wagon they keep on the 15th floor. Quinn, of course, did not want to let go of her sweet red shoes. She loved the 5 or so laps we took around the floor (it's quite large) and it seemed to revive her and give her more energy!

Quinn didn't actually drink the water from the bottle in there. It just makes an excellent play toy.

Most of her "equipment" gone, save for the oxygen and one little IV in her foot. I believe at this point they had turned off the oxygen and she was on room air. (It takes a little while for the brain to start breathing well on it's own when you have been on a ventilator so they supplement with oxygen until the body takes over.)

Aunt Kendra & Uncle Gary came to visit! They are such a blessing in our lives. This was a big visitor day - Quinn also had a visit from my boss & pastor, Jim & his wife Terri - as well as from our other sweet friends and former boss of mine, Uncle Meetch & Aunt Elizabeth. These kids have a lot of "aunts" and "uncles" : ) Lucky kids!!! We were so glad to see friendly, smiling faces other than doctors and nurses on that Saturday!

Sunday after surgery - NO MORE OXYGEN! Daddy put her in 2 hairbows. This little one loves accessories. I always assumed I was going to raise a little tomboy, but the way she loves frilly things, I could be wrong :)

What Up, Daddy-O?

This was from a very sweet friend of my mom's, Miss Dotty - it hung above her crib the entire stay.

Playing with her wild kingdom of stuffed animals

The sweetest cookie bouqet from our good friends, Libby & Gil. They did "turtles" since turtle was Q's first big word. It was so precious and yes, they were delicious! I may worry about Quinn regaining her weight, but don't worry about me - I should be well over my pre-hospital admittance weight very soon :) ha.

Release day - October 3rd - Just 6 days post-op. Playing with balloons from my cousin Rykert & Libby and their daughter Scout.

We are outta here! Yes, same outfit as pre-op day, but don't worry, it was washed twice in hot water, as was the car seat.

The hallway at TCH that I walked more times than I can count. Quinn LOVED all of the artwork they had in here. On our way to pre-op, we had to stop so she could admire and point. And wouldn't you know, as we were leaving, she remembered it & frantically starting pointing again and even smiling a bit. Once we get past all of these follow up appointments, I hope to not see these hallways (or the elevators for that matter) for a LONG time, no matter how cheerful they are :)


XOXO,

Team Quinn

Recovery at Home

I'm not going to lie. This is tough.

It breaks my heart into a million pieces to see my little girl in pain. The medicine helps but not a ton. She is just not the same yet. All I kept hearing was "she will bounce back so fast you will not even know she had surgery". I don't see that yet. I see glimpses of the Quinnie I knew, little grins of fiestiness here and there, but not often enough.

As most of you know, patience has never been my virtue. I want her to be healed. I am not impatient with her at all. Not her fault. I don't know who I am impatient with but I just feel sad. And helpless. We spend most of our days just laying on the living room carpet trying to avoid Ryan bumping into her. And I throw endless amounts of balls and toys for Ryan to fetch and put "UP" (he recently learned how to say UP) - which is not exactly the greatest life for him either. I feel drained from the day when it's only 10:30am. I can only imagine how exhausted she must be.

When we were doing all of her pre-op work up stuff, it included mulitple blood draws. Well, they missed 3 times and finally got it on the 4th. By the time they got it, Q was soaked in sweat and tears, as was I. I tried to be strong for her, but I couldn't help but cry. When we were in that horrible little room, I just remember saying over and over "I would do anything to take this away from you, anything." And that still remains true today. I wish it was me laying on that gurney, going on bypass, having my chest broken open and my heart stopped. If I could go through recovery instead of her, I would. But I can't. And it breaks my heart. I would do ANYTHING for her not to hurt.

I hope that I can look back at this post in a week and be like "what were you talking about, Meagan?" You have this little girl sprinting around and she is OKAY. I pray that happens, and soon for her sake. Right now it kills me because before this surgery, she was sprinting around, running reckless and as much as she would frighten me with her fiesty spirit, it was also a mood lifter much of time.  

Now, she is super cautious. Thank God she seems to know her limits. She toddles around but mostly only in the evenings, after her pain medicine has kicked in for the day. She tries to crawl to get places but it's almost like she has forgotten how to crawl (it's been 4 months since she truly crawled anywhere - she was a walker as soon as she figured out she actually could walk). She doesn't pull up on much of my furniture, she's not yet yanking every toy out of her baskets, she's not climbing on the couch and driving me crazy - what I wouldn't give for her to drive me crazy.

So for now, we cling to each other as I pray for a speedy, speedy recovery. I know I may be asking too much --- we ultimately had a successful heart repair that will allow her to live a full life. And prayerfully she will not remember any of this. I pray to God that's true.

I feel like I am putting it all out there writing this post. There have been a few comments/emails//texts from our wonderful support group talking about our strength. Let's be clear - we have NOT been strong. Quinn has been the strong one. She is the one that has given us inspiration. Where most adults would still be bed-ridden after open heart surgery 6 days later, she came home. And where we have failed in our strength, God has to have carried us the rest of the way --- I have no other way to explain it.

"Mommy-adrenaline" though, is wearing out. I think Daddy's is too. We are all just tired. Every emotion we had was put into those 6 days and now her recovery, and our energy supply is depleting. And if mine is depleting, how does Quinn feel? Sweet, sweet girl. Please God, bring our little girl back to health soon. Let this be just a blip, a tiny moment of the rest of her life.

We continue to rest in you.

Home, Sweet Home...Again

We are home with little miss Princess, Quinn - all decked out in her red Dorothy slippers (given from a sweet friend of my mom's).  We actually got home yesterday afternoon (Monday) and things have been a little crazy since then. In a good way. And a little bit of a stressful way making sure we hold her correctly, adminster meds at the right time, keep her away from her germy brother who has grown understandbly clingy in the past week, wash loads of "hosptial germ clothes" and the list goes on... Thank goodness Matt's brother Christian was wonderful enough to come in town to watch Ryan while we got out, and then stayed until this afternoon to run interference. HUGE help - love you, Christian & thanks to Stacey, Riley & Ady for letting you stay with us for a little while to get settled.

 Anyway, I have much more to write about her homecoming (of course, would you expect anything less than 500 words from me???) - but for now, we are hitting the proverbial wall, so I will leave you with a sweet little video I took about an hour before discharge.

Thank you to Rykert & Libby (my cousin, Q's second cousins) for providing the entertainment for Q. She LOVED those balloons from the moment she opened her eyes for the 1st time on Wednesday afternoon. And if you like knitting/crafting or just want to see my adorable 2nd cousin, Scout, visit Libby's blog...

Video:

Love to you all - more to come!!!!

Recovery Continued!

To be honest, I can't really remember where I left off last time in Q's recovery and I'm too lazy (tired) to flip back and see, but I believe it was letting y'all know we were moving to the recovery floor on Friday.

Well, we did and got up here about noon. Our room is pretty spacious, plenty of room for all of Matt and I's junk, plus a wild kingdom of stuffed animals for Quinn. Lucky little girl has been utterly spoiled since she got here (as she should be after 2 surgeries). Hope she's ready to share her loot with her brother when we break out of this place :) Seriously, our friends and family have been so generous and thoughtful - we are beyond blessed.

So far everything has gone very smoothly up here (or down here depending upon how you look at it). 15 is a totally different world from 18th CVICU. You go from having round-the-clock one-on-one care to being thrust into the regular hospital world with no transition. I love that we are able to care for Quinn more and do more than just comfort her by patting her back, but it was also super scary for me to be on my own for the first time. They want you to know how to administer meds, bathe, clean her incisions, remove tape, etc etc. Those are all totally reasonable requests so that you are prepared when you go home but just even holding her or picking her up can be tricky! It's almost like I have a newborn again and I am trying to learn on the job as quickly as I can.

We have to be super careful the way we pick her up. I am thankful she's just a little peanut otherwise it would be even more difficult. Because of her incision, we have to do almost this scoop method to sit her up or get her out of the crib. No picking up under the arms or anything else that would stretch her incisions. We were finally able to put real clothes on her Friday and you can just imagine that I brought half of her closet up here because I was so excited! I also didn't know what would make the most sense to wear or be the most comfortable. Thus far we have settled for loose tops and little bloomers and she's a happy camper. Oh, and of course socks and shoes. I knew my little girl was coming back to us when she starting pointing at her shoes and lifting her feet for us to put them on! I almost cried tears of relief because that's the Quinnie I know and love.

Yesterday we were even able to put her in a wagon with a bunch of pillows and take her for a little ride around the floor. It was soooo good for her to get out and see something different than this room. In fact, when we got back, her saturations even jumped up because she had more energy running through her body.

Which brings me to the medical part of her recovery.... she is right on track for her type of surgery. The doctors are all very pleased and quite frankly, now that we are on 15, we only see them once a day because again she is quite boring. I'll take it. The only pain med she is on (and has been since Thursday I believe) is Tylenol with codeine. That's incredibly to me! And typically she only has that every 6-7 hours now --- and we request it when we think she needs it. To be honest, Quinn has been so strong and not fussy at all up here, that it's difficult to tell if she is hurting. So right now while we are here, I make sure she doesn't go more than 8 hours without it, just so the pain doesn't become unmanageable.

She is also on a diuretic type drug to continue to flush her kidneys and make sure her lungs keep dry. It's not unusual that babies that go on bypass for an extended period of time would have a little bit of extra fluid in their lungs. Her xrays as of yesterday have all looked clear but they are being cautious. She receives that 3 times a day but we are trying to work it down to 2.

So, after a 8 hour open heart surgery, this little one is just on 2 drugs! No blood pressure meds or anything else that we were warned she may have to go on. She will most likely go home with the diuretic but just for a short period of time, and will have the Tylenol for probably another week or two.

Her incision looks great. It's long for sure but it should just become one little line over time. It does go from pretty much right below her throat down to the top of her tummy so definitely not tiny, but small price to pay for having a healthy heart!

She is starting to eat and drink better - eating is coming along more slowly than drinking. I think part of it has to do with perhaps the codeine suppressing her appetite a bit and also comfort while eating. She's been on her back for so long that I am sure it is disorienting to sit up and try to eat again. We did request a highchair for her - but it must be for a 28lb baby, so we brought ours from home. It seems to work a little better and she's more comfortable in it. I also think this food is probably not incredibly exciting. We do get a menu and get to choose options for her but they do not vary from day to day - and a lot of what is relegated to is the same ole hamburger patty, chicken nuggets, or spaghetti. Our lifesaver has been our yobaby that we brought from home because she will almost always take that without fuss. And yesterday I brought up some frozen meals that she has always liked, so I think we'll try that today and forgo the cold nuggets. Nothing like probably paying an arm and a leg for this room and food to let it go untouched and still have to buy your own food for your baby. BUT every cent is worth it to get her to eat and get on out of here.

I think the most surprising thing for us is that she has been pretty much a complete, calm angel since we got up here. No fussing except if we maybe move her wrong. The doctors and nurses kept warning us that the fussiness would ensue once she was off of the hard-core drugs, but it hasn't been anything that's been uncontrolled at all. She seems to be taking it all in stride which in turn is making us more calm. By some miracle, she is almost on schedule as well - sleeping a couple of times during the day, eating her meals and snacks at appropriate times, and then sleeping through the night for the most part. The worst is that they must do vitals every 4 hours so she is disturbed at midnight and 4am. But even that she has handled like a champ and gone straight back to sleep. She's for sure dealing with the constant interruptions better than her parents :) They also do a weigh-in at 4am and have to strip her down naked & throw her on this cold metal scale. I understand the weighing, but seriously, 4am??? The assistant who did it last night received a nice little talk with me about being more gentle and kind during these little weigh-ins. Her mannerisms left much to be desired in my opinion for a 16 month old 5 days post op. AT 4 FREAKING A.M.

So Matt and I are now virtually passing ships in the night. Only it's usually not the night but the daytime --- we are taking turns staying up here for 24 hours at a time so at least one person can get some good rest and see our sweet son. It's actually really funny, we've almost become like 2 nurses switching shifts where they give the breakdown of the patient. Yesterday I came on duty and Matt walked me through how their night went, where he was keeping things, how he was keeping track of her intake, etc. All I can say is that I am incredibly fortunate to be married to such a caring, attentive, hands on father.

We are both kind of living out of our cars now, just rotating clothes and toiletries out as we go home. It's not what I consider ideal for sure because I want Quinnie up and out of here, but all in all, it really is running quite smoothly. I don't know what we would do without our sweet friends, that's for sure. We were so fortunate to be able to stay at our friends' Katie and Ryan's house during her ICU stay (they are about 5 minutes from the med center) and then Quinn got lots of visitors yesterday to keep us all occupied and help the time pass just a little bit faster. I think they were all a little surprised how well she looks. Of course, she looks tired and she's definitely not the fiesty thing yet they are used to seeing but all in all, she looks wonderful and fairly content. I honestly just think she is bored to tears. How many times can you watch Tangled???

Hopefully today (Sunday), we can get her out even more and go take some more laps around the floor. And I'm hoping for a bit more spunk and perhaps even more smiles! Last night I finally got my first hint of one as I played peek-a-boo under her highchair. Melt.my.heart. And then she felt strong enough after eating dinner to sit up all by herself on the floor and play with some toys and her shoes. She even was able to stand with assistance between my legs and seemed perfectly happy and comfortable doing that.

So all of the above may seem mundane but it's really more for me to remember this journey. This has been quite the 6 days - part of it has just dragged on, but part of it seems like it was already ages ago that we were sitting waiting for updates during her surgery. It's a bizzare feeling.

But her recovery is definitely going much faster than we anticipated or dreamed. There are even talks of us getting out of here by Monday or Tuesday. Yes, this Monday or Tuesday. As in 6 or 7 days post operation. Whoa. No matter how eager we are to have her under our roof again, we definitely want to make sure she is ready but we trust this staff immensely to make the proper recovery decisions for her. And if we don't feel she is ready, then we'll say so. Patient advocacy is a huge responsibility for us and one we take very seriously. We ask a TON of questions and make sure we know every little thing that's being done or administered so we are all on the same page.

So we'll see - for now we are just taking it one day at a time. And selfishly, I am soaking up this little cuddly one that I have now :) If you've read this blog for any amount of time, you'll know that Ryan is typically more of my cuddle bear & that Quinn is usually too busy to stop and just lay still. But yesterday we must have laid together for several hours combined just watching movies and lots of football. I hate that heart surgery brought her to that but I am going to enjoy it while I can!

Sorry for the long-ish update but had some catching up to do. We will keep you posted on her release date. What a day of celebration that will be! God is so good.

Love to you all