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

Moving On Down...

GREAT news - Quinn is definitely moving down to the 15th floor today (the recovery floor for cardiac patients). This is the next big step in her recovery - we have no idea how long we will be there. It will kind of be up to Quinn and how quickly she starts to regain normal functions. They started her on clears yesterday afternoon. Little girl was sooooo excited about her sippy cup with water and drank like she had been in a desert for 10 days - which she kind of has been! It was so fun to see her so excited to drink. I actually cried because it made my heart so happy to see her NORMAL. Once she had water then her throat felt well enough to even give me some fun babbling. Still haven't seen a smile yet but hoping for one today. I have more fun stories of what she is up to but gotta run back up to her floor for the doctors' rounds. We don't know what time we will be moved but hopefully sometime late morning.

Thank you for the prayers from yesterday - she recovered beautifully from her impromptu visit to the OR and did wonderful! All I can say is that this little girl is my absolute HERO. Her strength has been an inspiration to our entire family.

Love to you all,

A Little Hiccup

So this a.m. the doctors tried to remove the 2 chest tubes Q has had in for drainage. Unfortunately, one of them is stuck somewhere in her incision/sutures. They had Dr. Fraser come in and try to remove it but he couldn't get it either at the bedside. So in order to save her massive discomfort and not knowing how & where the tube is stuck, they took Quinn back in the OR about 30 minutes ago (11:45ish, Thursday). They will have to put her under general again and there is a chance they may have to open up the entire incision and sew it back up depending upon where it's connected. We could have waited until tonight to have Fraser perform it but Dr. Heinle was available (who is a great surgeon as well), so we just went with him.

So a little hiccup and not what we were expecting, but it shouldn't be a massive deal. It just means that she won't move down to the recovery floor (15th) anytime today and she earned another overnight in the CVICU which actually is just fine by me.

Just wanted to keep you posted - just pray that all goes smoothly going under and coming back out.

Update (1:00pm) - All went well. They had to completely reopen her incision (poor girl) but they were able to remove the stubborn chest tube that was hooked around one of the wires they used to fuse her chest bone closed. They are just checking xrays right now to make sure there's no air around her lungs and then we should see Quinn in about 30 minutes or so. Thank God for the awesome staff here who moved so quickly to get this taken care of so our little girl wouldn't be set back too far in her recovery.

Pray for NO MORE HICCUPS!!! One is enough!