The Final Homecoming (Prayerfully!)

We are home again. One family. Under one roof. The way it should be. By the end of this evening, Matt and I will have seen more of each other than we have for the last 13 days. And that doesn't even count the other 2 previous hospital stays. I've missed my husband for sure, but nothing has put an ache in my heart like my kids being separated for so long. And of course, my daughter being as sick as she was.

But now we have Quinnie back. She is a different child. The homecoming this time was 180 degrees different than the other two. As I type this, she is walking back and forth across the room, playing with Daddy and Ryan. She's a little unsteady but has a big ole grin on her face - she's not moaning in pain, she's not grimacing, she's just Quinn. Oh, praise God.

I wish I could have grabbed the camera quick enough when we got home, but as we were unloading things, Quinn crawled over to where Ryan was sitting, laid her head down on his lap and then he patted her head. Oh, my goodness. Then later he walked over to her and gave her a big kiss. And they held hands while eating lunch. My heart may have just exploded into a million pieces of happiness.

We still have some work ahead of us - Quinn will probably need some PT for a little while to get a little more steady on her feet. Her legs are very weak after almost 5 weeks of being down and out. We are also beginning the large task of putting weight back on her. During her stay, she lost (gulp) over 2 1/2 lbs. Now that doesn't sound like much for an adult - but for a baby that weighed just over 20ish or so pounds, it's quite a bit. And we had fought so hard over these past 6 months to fatten her up. So break out the olive oil, butter, casseroles, avocados and the rest of those good fats. Project Fatten Quinn begins.

We will watch Quinn very, very closely obviously over the next few weeks. We will see her cardiologist next Monday for a check up, and I am taking her to the pediatrician this Thursday just to make sure he thinks she's doing ok. The more eyes on this kid, the better. I'll drive everyday to the doctor if I have to, especially if it means we don't end up back in the ER or on the 15th floor : ) (And all due respect to TCH and the 15th floor, but I have NO desire to see that area of the hospital again. Oh, the sleeplessness, restlessness, claustrophobia, awful food and everything that goes with it. I am thankful for the staff who helped get Quinn back on her feet but not a tear was shed when we checked on out of there!)

When we left, Quinn was given a clean bill of health - her xray was perfect this morning, her labs were excellent (even though they thought she may be dehydrated from not drinking enough), and her echo showed her heart was working perfectly. We are back in saturations of 99 and 100! That's pretty much as good as it gets. And beyond the science, the child is just so normal! Happy, smiling, giggling, babbling, and still smart as a whip (I don't usually like to say that - but we were worried about her cognitive abilities being affected by a 2nd surgery. I am happy to report that they seem perfectly in place- she even said her 2nd "big" word (besides the normal baby words) while in the hospital. She said "PURPLE". If that's not a girl after her mother's heart, then I don't know what is! GEAUX!!!!)

The scariest thing was looking at her discharge paperwork -- it literally lists all of her diagnoses since she was born and transferred to TCH.

Among them (and this is not a comprehensive list): Double Outlet Right Ventricle, Pulmonary Stenosis, Ventricular Septal defect, Apnea of Prematurity, GERD, Fluid overload, Pleural effusion, surgery for Complex Congenital Heart Disease, Congestive Heart failure (diagnosed this past check in - how it kills me to even see those words), Right Ventricular Hypertension (the high lung/right ventricle pressures that pushed her liver down almost 2 inches and forced it to become enlarged) and Acute Respiratory Failure.

Oh my poor baby. But my precious, precious miracle. Because at this moment, she has overcome ALL of those diagnoses. Thank you, God. Without the power of His Healing Hands and YOUR prayers, I know none of that would have been possible. Trust in the Lord at all times. There were so many dark times when I just didn't think I could take one more step or have any more faith. I felt in some ways abandoned by the One whom I love with all my heart. But He is always faithful and always making our path --- it's not always easy but one day, we will see the reason behind all of this. And now we are in the light.

We will post some pictures later and more stories but for now, I'm going to go revel in the craziness that has descended upon my house --- and rejoice for every bit of loudness, mess, toys everywhere, and laundry unfolded.

Oh and here's the video of "purple":

We love you,

On Her Way Back

It's official - I think I can finally say we are getting our Quinnie back! The last 24 hours have been a major turn around period for her. Our hearts are full of joy at seeing how well she is doing. It's actually sort of remarkable. Now I know that the last surgery went bad almost from the beginning. They just couldn't tell via echo that the patch was leaking - but my guess is that the pressures were already changing in her heart and affecting her recovery. The last time we were post-surgery and even on day of discharge, the child had not smiled once. We just blamed it on the pain meds, her being a little slower at recovery, the fact that she was ready to be at home, or a bazillion other things. Now we know the child was already starting the downhill trend that would continue for the next three and a half weeks.

Yesterday (Wednesday), she gave us her first smile, genuine smile, and began being more playful. On Tuesday, she just looked sad, sad, sad - but I can definitely blame that from coming off the sedation meds. But by Wednesday she was already starting to look bright-eyed and beautiful. This was from first thing in the morning when Matt walked into the room:

Oh, how I loved seeing those bright eyes. Compare with Tuesday:

Pretty girl but definitely a little sad and confused.

Anyway, Wednesday was a big day - she was all about her food and drinking her milk. And did it all from the comfort of her bed :) I started crying (what a shocker) when she grabbed the fork from my hands to begin stabbing the chicken herself. That's my independent, fiesty girl! She also ate about 18 Yo Baby yogurts - hey, whatever works. Thank goodness we keep a large stock at home!

Big girl eating with her fork - and she didn't even mind that it was hospital-issued plastic. Or that the chicken was cold. And nasty. She liked it anyway. Bless her heart because I couldn't even eat it.



We call the IV on her hand her "paddle" - they have to tape it all up and put this splint thing behind it so she doesn't pull it out. Trust me that it didn't slow her down at lunch even though she prefers to use her right hand for everything. This makes Daddy a little sad because he was hoping to have another fellow lefty in the family. Sorry, babe. She's gonna be a "righty".

Wednesday was a big day in a couple of ways -- her xrays from that morning showed little improvement of getting the large pleural effusion on her right side to drain. The left side looked just fine, but for some reason the chest tube was just not capturing the right effusion. (by the way, the word "effusion" is going down as one of the words I absolute HATE to say, write, or hear. It joins the words "moist", "tee-tee", toddler, kiddo, and panties)

I digress. So, when I walked in for my "shift" yesterday, they had her laying almost upside down in the bed, trying different positions to see if they could get some drainage. This was after they almost did little flips and back bends with her in the chair and having her lay on her tummy. No drainage. So by 1pm they had to make the call to go ahead and drain it with a test tube. It was just in a difficult position and sort of stuck so it was our only option. We could have tried to wait a bit longer, but the diuretics weren't really making a dent in it, and it was likely that time wasn't going to change that. And Quinn would not be able to move onto the next stages of her recovery if we didn't get rid of it. So yesterday afternoon I signed yet another consent form for them to thread a needle (followed by a thin tube) through her ribs and into the space between her chest and her lungs to capture the fluid. I will say that it was finally nice to sign a consent where one of the risks was not death. Only bleeding and infection. Funny that didn't bother me - but in relation to the number of forms I have literally signed away her life, I was happy to sign it.

So they gave her some "happy meds" similar to what she had before her surgeries - only these made her super goofy. She immediately looked at me with these googly eyes and started babbling away. Loudly. And constant. She became dead weight and we lifted her into the bed and she looked straight at me with these huge eyes and exclaimed "Dada!" That got a good laugh out of everyone. As they kicked me out of the room to go wait out the 20 minute procedure, I heard her laughing away down the hall. Good for my heart to hear that, even if it was drug-induced.

The procedure went perfectly and they drained 70cc immediately. In the hours that followed, they ended up getting out almost a liter total. That's A LOT of fluid, y'all, especially in a tiny little girl. She recovered nicely from the procedure and ate a bit of dinner and 2 yogurts and seemed to be down for the count by the time I left.

Post-procedure. I'm feeling better, Mommy! She looks a little irritated with my constant picture taking but whatever.

I returned super early this morning to make sure I caught the surgeon's rounds (they typically come around between 6am - 7am). As soon as I walked in, she opened those big ole eyes and gave me a big smile. Sweet girl. She has been sitting up perfectly as well the past couple of days --- another thing that she really had no desire or energy to do the last go around.




I know she's not smiling exactly in this picture but trust me that she was. She just wouldn't let me get a picture of it.



She spent the rest of the morning playing with me, reading books, sticking out her tongue, babbling, playing peek-a-boo with my hat, reaching her hands out to everyone who came in the room, and smiling. I had to turn away a couple of times so she wouldn't see my happy tears.

We also received the good news that the tube worked just as it should and her xray remained clear. So they made the call to go ahead and remove both of the tubes at 12:30 today and send her on down to 15th floor to finish her recovery. Praise God! I was a little nervous about having the tube removed, but after 2 reassurances from both Dr. Fraser and the attending on 18, they assured me they had gotten it all and it would actually be more dangerous for her to leave it in.

So tubes came out at 12:30 and Quinn finally got a room on 15 around 5pm today. I have to say, I am really pretty sad to leave 18 - the staff up there is AMAZING. I cannot say enough about how much I love them, for their compassionate care, wonderful ability to explain things in terms I understand, how evident it is that they love their jobs, and their teamwork. Everyone is on the same page up there and on the same team. It's sort of incredible, given that it could be a very sad place, but it truly is a happy place to be. However, 15 is the only way out of the hospital so here we go :) I was totally dreading it but I have to say I think this time around will be much easier. This time I have a child on the mend, one that wants to play and one that is seemingly not in much pain at all. Last time(s) we were there, she was so sick and miserable that it was a very difficult place to be. You are pretty much on your own and when you have a child in pain and no one can tell you why, it's incredibly frustrating. This time will be different. I just know it. I'm not saying the next few days will be easy but prayerfully we are on the right trajectory now.

We will definitely be there through the weekend - the doctors are not going to take any chances especially with her history of the effusions (I just vomited a little in my mouth writing that darn word again). So if she continues to eat well, start drinking more, and showing all positive signs, then we will probably head home early next week. We are willing to be there for however long it takes. I am not eager to see the inside of the TCH ER anytime soon. Twice is about two times too many for anyone.

(Oh, and to answer a question that some of y'all might have --- I was really worried why she kept forming these effusions. My biggest fear is that this surgery will go bad as well. However, it was explained to me this morning. Basically, since most likely the patch started leaking from almost day 1 (although undetectable on the echos), it started irritating the heart and helping the effusions to continue to come around. Then we would balance it was the diuretics, get most of it to go away, but again the patch problems & pressure issues remained. So it would just return. This time, it's just a matter of the normal effusions that 90% of heart surgeries produce and a function of going on bypass and cutting into the heart. And because Quinn's body likes to do things the hard way, she happened to form an effusion in just a very difficult place for the chest tubes to drain. It was almost sitting in a perfect pocket that was unreachable by the tubes placed during surgery. So they assured us, while she will likely go home on diuretics as a precaution (and 85% of their kids do), as long as the repair holds up, we should not have a fear of the effusions returning to the extent that she was experiencing them. It may take awhile for her lungs to completely clear, but that's going to be more of a function of time and her moving around, being more active, coughing, etc. I don't know if any of that made sense at all, but I did my best in my non-medical, non-technical, "I hate science" background).

So anyway, Matt is up with Quinn now on 15. I pray they both have a smooth night and a nice transition. For now I am hanging with my little man and watching him do this:

Peaches and crackers, yummy!



He has gotten tons of attention the past few days thanks to Gigi being here. So yesterday after she left, he was  little stir crazy so Matt summoned up the energy to take him to Little Gym to burn off a little steam. I swear he has grown into a little boy during these last few weeks. He's become so much stronger, much steadier on his feet, talking all the time, and so "boy", if that makes any sense. No more baby. All boy.



Anyway, we will flip flop again tomorrow and "Ma" (Matt's mother) is coming in town tomorrow morning to stay with Ryan. We are so blessed to have incredibly strong and caring grandmothers during this difficult time. They have both been incredibly generous with their time and have taken such good care of our little boy. Maybe too good of care. He doesn't seem to like Mommy's rules anymore :) ha.

And I leave you with a picture of Quinn on 15. Wearing clothes instead of a gown for the first time in 5 days. You can tell that Matt got her dressed because she is lacking a bow. In all fairness though, I don't think I packed a bow to match that top :)

I promise she's happy - she just hasn't really gotten a good nap today so she's pretty zonked!

Love to you all & thank you for your continued prayers. We have so much to be thankful for tonight.

Recovery Continued...

I wasn't planning on updating tonight because I was trying to keep my eyes pried open with toothpicks but I had a sudden burst of energy. Anyway, first of all, thank you as always for your continued prayers. The stories I continue to hear about people praying across the country just astound and humble us to the core.

Quinn had a big day yesterday (Monday). They removed the ventilator and she did great breathing on her own. She did have a few irregular heart rhythms but nothing crazy and pretty much expected after your heart has been cut into. Typically they would have removed it Sunday sometime but they were keeping her super sedated for those first 24 hours post op this time, so it took a little while for her to wake up and be ready for it. I was in the room when they did it and although I turned my head at some points, it was actually really kind of neat to watch her take her first breath. And she fought like heck when they were messing with her so I knew my little girl was coming back :)

Anyway, that pretty much exhausted her yesterday so she spent the remainder of the day sleeping. I left around 8:30 or 9:00ish to head to Katie's for the night. It is such a relief knowing we have a wonderful place to stay with wonderful people who I never feel like we are intruding on. Everyone should have a friend like those two. This morning, I woke up super early and headed back the hospital in hopes of catching rounds - of course, I just missed the surgical rounds but caught the general cardio rounds. I cannot speak highly enough of everyone on the 18th floor, from the attendings to residents to nurses to the cleaning staff --- they are all so amazing and I feel blessed to have Quinn in their care.

She had a fairly uneventful night. They were able to remove the ART line from her wrist, so now both of her hands are free from IV's (yay!), pulled the foley catheter and the rectal themometer (blech), and placed her in a regular crib again (the standard prison issue cribs from TCH :) ) So the wires/tubes she still has: central line in her neck (which will probably come out tonight), the two chest tubes, and an iv in her foot. The chest tubes are looking more and more likely to stay for a little bit longer. They are still pulling quite a bit of fluid away, especially from the left side. She's on a constant cycle of diuretics but may add a hit of Lasix tonight to see if they can pull some more fluid out. They want her to be "negative" and right now her output is "positive". I act like I know what I'm talking about but rest assured, I have no clue.

I just know they need to get out more than what they are getting --- so kind of off-handedly, the attending (who btw, did Quinn's anesthesia for the first sugery and has a nine year old daughter named Quinn as well!) - that given her history with these effusions, they may go ahead and drain them either tomorrow or the next day. That would include going under a local and then sedation, putting in another tube and seeing if they can't pull some extra fluid out of there. Obviously our first choice would be for the drugs to work, but if they don't, then let's get it out of there. It may buy us another couple of days on 18 which actually doesn't make me that sad. 15 is fine and we've had good care down there but it's a different world going from the one on one attention to a post-op baby being watched by one nurse covering 4 or 5 patients. And we are obviously more restricted on 15 as parents - leaving and all of that sort of thing. Not that we leave often, but it is nice to know you can run down and grab a coke without anyone giving you a dirty look. :)

So recovery time is still kind of unknown. We are taking it just one slow step at a time. Sometimes one hour at a time. I know both Matt and I feel beaten down, so I can't imagine how little Quinnie feels. I just ache for the day when we are beyond this and prayerfully we will get there soon. I miss my husband (I saw him for literally 10 minutes today for the first time since Sunday morning I think). And I miss seeing my little boy every morning --- my heart feels pulled in 2 different directions but I know right now that Quinn needs us more. Not that Ryan doesn't need us - but it's just her turn right now. Maybe one day that will reverse for a moment (but hopefully not with open-heart surgery, two is quite enough, thank you very much!)

So tomorrow we should know more about their plan about the extra drainage chest tube. I pray I just walk in and find a completely clear xray and we don't even have to worry about it. We have Quinnie's clothes packed and ready to go for 15 just in case.

And just a fun P.S. - when your daughter's surgeon is a HUGE Longhorn fan, not a smart idea to wear an A&M hat at the bedside. I assumed I would have missed seeing Dr. Fraser this morning or that he was at a conference, and of course, he walks in. Then he stopped and did a double-take on my hat and was like "what are you wearing???". I was still not quite awake yet so I'm looking down at my clothes and wondering what's wrong with my standard issue yoga pants - and then duh --- he usually sees me in my nice burnt orange cap in my dad's honor (and Dr. Fraser's) and for some reason I just threw on this other one today --- oops! But it was good to see him and he continues to be pleased that Quinn is on the right track, albeit a slow one.

Did I tell you that Q is a case-study for next month when the entire team meets? Yes ma'am, she is. Not exactly the goal we had in mind when we started all of this but she will be presented to learn more about perhaps why the sutures came undone or popped open, plus all of the other little blips she's had. I wish I could be a fly on the wall for that --- it's so interesting to be in rounds and hear what all they are spouting off about her condition. Makes me wish I was just a little smarter though :)

So we'll do our best to keep you posted, especially if we move to 15 soon. I am on for the next 24 so posting will be brief.

Thank you again for your prayers and I leave you with a few pictures :)



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Look who's awake!



We must have accessories! Blame the blue paci on Daddy :)

First comfy breaths off the ventilator, yay!!!!

Love,

Meagan

Smiles for the Day - Ryan Living It Up with Uncle Blaine & Aunt Christina!

Ryan definitely had some fun times with Uncle Blaine & Aunt Christina. They were sweet enough to take a couple of videos and text them to us at the hospital. It was so good to hear some belly laughs and know that our little boy was well taken care of (and perhaps a little spoiled, too - which he totally deserves). These brought smiles to our face and hopefully will to yours, too :)

The first one is Ryan playing with "catch" with their dog, Putty. Ryan LOVED playing with their dogs - and I believe he flat wore them out. Putty is the smaller sized shelty they have, who is the perfect playmate size for Ryan. They also have Denver, a 120 lb Golden Retriever. Amazingly enough, Ryan was not afraid of Denver in the least, but apparently Denver was scared out of his mind about little Ryno :) ha.

The second one was Ryan's first time to go feed the ducks at our neighborhood park. All those ducks and my son had no fear. He had a blast. Thanks, Blaine & Chris, for taking such good care of our little man!

Recovery Day 1...Again :)

So I have probably flooded y'alls blogger readers with all of these updates, but did just want to take a minute to let you know how Quinn is doing. So far, so good. Praise God!

When we saw her yesterday after surgery, it wasn't nearly as shocking as it was the first time - I guess that's one bonus for having gone through this again. The tubes weren't nearly as scary and to us, well, she just looked beautiful. She actually looked quite peaceful and comfortable which was such a sight for our sore eyes. Dr. Fraser came in again to check on her before he left for the day and was very pleased. Her liver had already started to soften and move back up. It's still not in the exact right place but getting there.

I was obviously pretty emotional after such a long day, so when we met with Fraser the first time after the surgery was complete I was drained. I assumed we probably wouldn't see him again until the next day so it was a pleasant surprise to see him in her room later on. Through all of this, he has been mostly "business" so I've respected that and tried not to be over effusive as I so typically am. But by the time we saw him late afternoon, I just couldn't help but cry. I actually told him that I didn't know if he liked hugs, but that if he would let me, I would like to hug him. And he got a big grin on his face and said "I am so a hug guy". Who would have guessed??? So he gave me the biggest hug and I just cried like a baby. Such a sweet moment for us given the man who has now saved my daughter's life twice. I think I even saw a welling of a tear in Matt's eyes in that moment. It brought everything back down to a human level and I am incredibly grateful for Dr. Fraser's compassion for our family and our daughter.

So last night (Saturday night), we actually had the same nurse who admitted her to the 18th floor the first time. As sad as the situation is, it was so comforting to see people who remembered us and remembered sweet Quinnie. She is an amazing nurse and does an awesome job of explaining everything to us in terms we can understand. So last night we felt comfortable enough to leave for a quick dinner, then returned for awhile to be with Quinn. Matt then left to be home with Ryan and I remained behind for a couple of hours and then headed to one of my best friend's house (Katie), who lives just minutes from the med center. We are incredibly grateful for her and Ryan's generosity in letting us stay so often and being so generous with their time. It was so comforting to get back to a comfortable place, have some good conversation and debriefing, and then head to bed in a cozy place where I knew I wasn't far from Q. I didn't have a great night sleep -- I just kept thinking of Quinn and fearing my phone would ring at any second, so by 5:00am, I abandoned sleep, quickly dressed and freshened up and headed back to the hospital.

Quinn had a great night and was doing well when I got there. I was able to catch the doctors' rounds which is always very interesting and I like to know exactly what's going on, what medicines are being administered and why, and overall her report, instead of hearing it second-hand. The doctors were incredibly gracious in answering all of my questions and all in all, they were very calm and happy with how she was doing.

They still are being very conservative in bringing her out of sedation and taking her off the ventilator as well. She had a few moments where she seemed to wake in pain, but they quickly took care of that. The other times she opened her eyes she seemed peaceful and comfortable. The moment of the day: she woke, opened her eyes, looked directly at me, held her hand out (which of course is covered in IV's and tape), then did this mouth-popping thing that we always do. She popped her mouth together first and then I did it, then she did it back again. Be still my heart. I may have just lost it right about then.

They have managed her pain well all day and have started to wean the ventilator settings. She is already breathing over the vent, which is a great sign. There's no sign of complications yet or any effusion, but they will be watching closely. They started her back on the diuretics to clear out any remaining fluid. Her chest tubes are still draining fluid but it's growing clearer, which is just what they want. We found out yesterday that the effusion was more serious than what was visualized on the xrays --- they were thinking it was mostly clearing up, but the fluid was actually quite significant and a little bit of a surprise to the doctors. So another "thank goodness we caught this" moment.

Sorry this update is all over the place - I am a little foggy. I was able to come home today once Matt and I switched places and hang with my little man. I had not seen him since Friday morning and was just aching to wrap my arms around him. He was completely loved on by my brother and sister-in-law the past few days --- they took him to the park, to the swings, tooks him for rides in his "car". We are so grateful they were here and got in a little bit of baby practice (hint, hint - are you ready for one yet???!!!). Matt's mom & my mom tagged team last night to take care of Ryan and now my mom is here for a little while until Matt's mom returns later this week. We are so blessed to have such an amazing family and friend base around us -- there's no way we would have kept any amount of sanity without their support (and yours!).

Anyway, the next few days will probably be CVICU which is just FINE by us. The staff is amazing, it's one-on-one care and we feel so comfortable with the care Quinn receives there. Not to knock the 15th floor recovery unit, but it's just a different world of care. We aren't even making plans to move down - nice, slow and steady is our direction this time around.

I'll try to post again tomorrow with more updates - it may be a little difficult because I will be on duty but no news will be good news :)

P.S. Gigi (my mom), has been working on Ryan saying "up" anytime he wants to be lifted up instead of him just whining. As I was sitting here typing, he actually said "Gi, Up!" Clear as a bell. Love that kid. He has just made my day in so many ways today --- to hear him belly laugh and have him cuddle with me was just what the doctor ordered for me :)

Love to you all. Trusting in our amazing God.

Update - And We're Done!

Thank you, Lord.

We are finished. Quinn came off bypass beautifully and is doing well. We just met with Dr. Fraser and everything went as they expected. Basically some of the stitches from the patch had pulled through the tissue and caused the leakage. That in turn, caused the pressures in her heart to start malfunctioning. He cannot explain why the stitches did what they did --- it is HIGHLY unusual and he couldn't even begin to conjecture why it happened. It just did. And prayerfully, it won't occur again.

Her lung pressure is a little high which they are going to keep a close eye on. Since the pressures in the heart were off, it put extra pressure on her entire cavity, including her lungs. So it may just take some time for that to adjust. Right now she is tolerating it well, so no medical intervention (ie: medications, etc) is needed, it's just something that we need to pay close attention to.

He did say that it was 100% the right decision to go in. There wasn't a doubt in his mind that she needed this done and done quickly before it turned into a devestating situation with further heart failure. We are so thankful for his discernment of the situation and choosing to move today to get this done and get her on the road to recovery. They will keep  her very, very sedated tonight to allow her body more time to rest and heal, and hopefully bring those lung pressures down. And obviously, they are going to be extremely conservative with her recovery and how they handle it. All in all, he was very pleased and we even caught a few smiles - which says a whole lot coming from him :)

Thank you for all of your prayers, thoughts, and love for Quinn and our family. We are so immensely thankful for you. When we see Quinn in about an hour, we will tell her all about how each of you prayed for her recovery.

God is good all the time.

Update #3

Ok, we are safely on bypass. Everything looks good and Quinn is holding steady. Blood and oxygen flow to her brain, kidneys, and other organs looks great. Dr. Fraser just made his first incision in the heart to start viewing the VSD (hole that was patched). He is now just visually observing and planning on how he will repair and get the patch to hold. Bottom line, all is running smoothly - maybe a little slower than we initially thought but only because he is being super, super careful - which we are obviously supremely grateful.

God is good all the time.

Thank you for your steadfast prayers. Love you!

Update #2

Ok, Quinn is still stable and doing well. Her saturations are running anywhere from 98 to 100 (which is great), her blood pressure is normal, and her heart is pumping nice and steady. Dr. Fraser is still working through the scar tissue, being very meticulous to remove all of it to make the tissue nice and clean in preparation for bypass. They anticipate she will be on bypass in the next 30 minutes or so and at that point they will be able to actually get more of a visual of the heart and the leaky patch. And that's where he will get an idea on how to either repair the patch or put on a new one, plus begin sucking out the fluid that remains around her heart.

We expect the next update somewhere around 12:30pm or so. Thank you for your continued prayers. We are reading every message, email, text, and comments you are sending and each one lifts our spirits. We are at peace with everything right now and surprisingly relaxed. I know that sort of peace only comes with the prayers that you are flooding up to the Heavens. We are so grateful.

Update #1

Well, it kind of feels like Groundhog's Day sitting up here in the Ronald McDonald lounge area and anxiously waiting for the buzzer to go off indicating an update. A little eery. Except it's definitely more quiet today than last time - we are the only surgery happening on the cardiac floor given that it's a Saturday so it's pretty much just us, the coffee maker, and ESPN Game Day.

Onto the update: they took Quinn this morning at 8am to get her under anesthesia. She slept great last night (thanks to some Lortab) and was not too irritable this morning thankfully. She was all about daddy and cuddling while we waited for the team to come to 15. Dr. Fraser came in to speak with us again and offered some reassuring pats on the back. I asked him if he had a good night's sleep and he assured me he did :)

It was a little different on the hand-off today than the last time. The first surgery they took us up to a holding room on the 18th floor until the team came to take her away once administering the "happy drugs". This time, that  holding area was closed (again given that it's a Saturday) so we literally traveled up with Quinn to the 18th floor and stood right in front of the elevators and the dreaded double metal doors leading to the operating room. Then they gave her the drunk drugs, waited until she was nice and happy, and then took her away. I'm not going to talk about how I felt about my little girl being taken from me again, but you can imagine.

We just received our first update and Quinn went under fine. She is 100% stable and stats are good. They have placed all the chest tubes and ivs in preparation for opening and used their endoscopic echo to visualize and confirm the findings from the exterior echo yesterday. No surprises so far but they won't truly be able to see everything until she goes on bypass and they can see how the patch is leaking.

They were just about to make the incision when the nurse came to speak with us so they should be in now. Once they get in, they will spend a considerable amount of time clearing away any scar tissue that started to form from the first surgery. Once that is clear, then they will begin to get in place the instruments to go on bypass. We expect we will be ready to go on bypass at around 11:00am. If you remember from last time, going on bypass is a critical juncture. Please be in prayer at around this time that she goes on as smoothly as last time.

And just a couple of notes that I left off from my last blog post as my mind was so rattled yesterday:

-Quinn's liver function tests came back a little high, but not unexpected for someone who has an enlarged or swollen liver. Nothing to be hugely concerned with - it simply is a symptom of what's happening in her heart. However, to give you an idea, not only is it swollen, but it's also been pushed down by the pressures in her body almost 5cm (about 2 inches) below where it should be. That is a HUGE amount for a little girl. This explains a lot of her being uncomfortable.

- And one thing I purposefully left off until I could tell my family is that Quinn's right side of her heart was virtually going into heart failure. Scary. It doesn't mean that she would have coded over the weekend or anything but that's why she continued to trend downwards. Thank God we have an amazing surgeon willing to operate on a Saturday and get her back on the road to recovery. We are more and more at peace with knowing that while we hate that she has to endure another open heart surgery, we are desperate for her to feel better again - and this is the only way.

We love you all and will continue to keep you posted in the hours to come. I promise not to be as lengthy with the next updates :)

Believing in God's power to heal. Jeremiah 29:11.

In His Mighty Grip,

Time to Break Out the Green Again...

Not the news we wanted to hear this morning. And I wish I could be in touch with each of you personally to let you know what's going on but it's just not possible right now.

Quinn had another echo this morning to focus on on the particular patch that was showing leakage. After the cardiologists consulted with Dr. Fraser they decided it was in her best interest to go ahead and operate again. They feel the leakage is causing her pressures in her heart to be way off balance and that is probably the reason for the constant effusion, as well as her being so massively uncomfortable. It virtually has pushed her liver way down into her belly and has caused it to become enlarged. They strongly feel that it's the right decision - they have done everything they can medically to deal with her issues and now it's time for surgical intervention. Obviously Fraser would not want to go in again if he didn't feel like there was any other option so we place full confidence in his decision. There are more technical terms I could use to explain exactly why and what they are doing but don't feel it's necesary at this point - bottom line, we are heading to the OR.

Surgery is scheduled tomorrow (Saturday) at about 8am. It will be similar to before, although hopefully not quite as lengthy. They are still estimating about 5-6 hours depending upon what they find once they get a visual observation on the heart. Yes, it's open heart again, they will stop her heart and she will go on bypass again and receive multiple blood transfusions.

(Side note: we are so grateful for the gift of life-giving blood that so many selfless people donate. It saved Quinn's life the first time around and will do so again tomorrow. If you are able to be a blood donor, our family highly encourages you to do so. It truly does make a difference in people's lives)

Our hearts are breaking for our little Quinn but we are prayerfully hopeful that this will solve her problems and we will have our Q back to us soon. I have cried buckets today but I suppose we are all holding up as well as can be expected.

Please keep Dr. Fraser in your prayers, as well as the rest of his team. Please be in prayer for Quinn's little body that has already been through so much. Pray for our families who are hurting for our little girl alongside of us. Pray for little Ryan who I wish more than anything in the world could have his sissy back home again.

We love you all. We would be honored if you would wear green again tomorrow for Quinn and keep her in your thoughts and prayers.

In His Hands,

I Don't Have a Brain for a Clever Title

So this is where we are at. I will try to make it brief as we are all running on fumes and trying to make sense of it all. Here's the rundown:

1. Quinn admitted with pleural effusion and potential pneumonia on Tuesday afternoon.

2. Admitted again to 15th floor

3. Pain has been out of control so they are doing their best to get that under wraps.

4. Finally Dr. Fraser knows we are here and we met with him this morning (Thursday) --- he thinks she is partially suffereing from PPS - which is basically an inflammation around the heart that can cause flu-like symptoms, irritability, being uncomfortable, not eating, the works.  Started back on Toradal for inflammation and also Prevacid to counteract any potential gastritis issues.

5. Met with cardiology team - this is the scary part. They will re-echo her tomorrow (Friday morning). There's no doubt from her echo today that the patch used to close up the VSD in her PA is leaking. We just don't know to what extent. Worst case, they have to re open and repair that. Another open heart. Best case, it can be a little leaky if they aren't connecting it to any of her other symptoms.Good news: Pleural effusion is mostly clear so the diuretics are doing their job there

6. She started on IV fluids this afternoon - she is already starting to perk up from that. When she was home she was guzzling milk like a cow and that has stopped at the hospital. Today she had less than one ounce by mid afternoon so they went ahead and started her on the IV. Not optimal for sure but at least we are making sure she is getting some energy from being  hydrated.

Next step of action: we have another echo tomorrow & will hear the results with that. We will continue with current course of meds. We won't know anything until mid to late afternoon on thoughts of the echo.

(I am leaving a lot out, as it is somewhat still cloudy in my mind - and I am still processing. Matt and I are hanging in as best as can be expected and our main focus,of course. is on our children. We are fortunate enough to have my brother and his wife, Christina, with us right now keeping the house at a sane level and allowing us periods of sleep.)

As you can imagine, after having such a great surgery success and coming home - this past few weeks has all been a bit of a tailspin. Thank you for your prayers. We will continue to keep you posted. Thank you so much for loving on our sweet little girl.

Love,

Back At TCH

No, that's not a mispelling or a typo - we are back at TCH. There is sooooo much more that goes behind this story, so I will try to weave out just the important details. As referenced yesterday, we saw our pediatrician this morning - he called for a chest xray, and sure enough, a large pleural effusion was found (on her left side), along with what could be pneumonia. He immediately contacted the cardioligists on call & sent over the xray and we were told to go immediately to the ER.

I ran home, threw a few things in a bag and headed up there. Long story short, TCH seems to have a bit of a communication (sarcasm highly intended) problem. After Quinn enduring hours of pain, 4 IV attempts, and more xrays, we finally received relief with morphine. And we have finally been transferred back up to the 15th floor where they we reevaluate in the morning and see what's going on and how they want to treat it. I have so much more I want to write about this - and how irritated I am with our so-called path of treatment, but anger has to come later. Right now, Quinn is priority.

So again, we are back on duty on 15th floor. Thankfully I have the best husband ever who rescued me tonight and sent me home to attempt a good night's sleep & hug my little Ryan. So Matt is up there with Quinn tonight and we will begin flip-flopping once again tomorrow.

I don't even know what to say beyond this - please be in prayer for the doctors as they meet tomorrow and try to figure out the cause of this continuing effusion, pray for Quinn's release for pain, pray that Matt & I are articulate and advocate proactively for our daughter's health, and pray that little Ryan will adjust to the changes that keep on coming to his little life.

Love to you all,

He Will Carry Her..

I think where I left off last time we were heading to TCH for what was supposed to be a quickie x-ray and check in with the cardiologist. I have complete respect for the staff at TCH but lately it's like the black cloud descends over our heads when we step in that place. Our appointment was at 1:30pm and they promised we would be in and out, given Quinn's delicate condition post-op and post-hospital release. Not so much. We apparently were forgotten and then they continually paged our regular cardiologist for an hour plus, wondering why he wasn't showing up. If they had just asked me, I could have told them he was in a conference in BOSTON. Nice. Anyway, we finally got our xray and met with a couple of cardiologists and then headed back home in rush hour traffic at around 5:30pm - not exactly super sonic speed.

The good news is that Q's xray was a little bit better than it was on Wednesday from our hospital release. Her lungs were approximately 90% clear - still a bit of the effusion left over but to be expected, I guess??? We will remain on Lasix now for 3 times a day until we go back to our regular cardiologist next Monday and then we'll see.

The other part of good news is that Quinn handled the appointment like a champ. After taking a nap on my chest for about an hour and a half while waiting for said doctors, she woke up in the happiest mood and just wanted to play... something she hadn't wanted to do for a long while. We spent at least an hour pulling things in and out of my wallet (good lord, I hope I retrieved all of my credit cards back) and smiling and kissing and hugging. All of the sweet things I have missed desperately for 3 weeks. Once we got home, she was free with her kisses, ate a great dinner, barely fussed during bathtime and settled into yogurt with Gigi and Steve. Matt and I even felt comfortable enough to go have an evening out of Mexican food and dart-throwing (oh yes, we are CRAZY kids these days) and talk about things non-heart, non-diet related. I went to bed Friday night with peace in my heart that we just experienced "the turn-around"

Saturday morning, not so much. Appetite not back, fussy, fussy, fussy. And pretty much the same continued for Sunday. We took them on multiple spins around the blocks in their "cars" which pacified her for at least a little while. My mind is just racing - I don't know what is wrong. We are giving her the medicines, she is doing baby things (peeing, pooping regularly, breathing well, drinking milk) but refusing most food, even her favorites. It's the saddest thing. She moans a lot but we don't know how much of that can be attributed to her personality and perhaps frustration in not being able to move as easily as she did before or if she is in pain --- and if she is in pain, where is it coming from??? 

Never felt so helpless. I just want my little girl back. I spoke to 2 cardiologists today and they are just waiting to see what our pediatrician says tomorrow before they make any assumptions. We have an appointment tomorrow morning and I am hoping they can take a chest xray and ensure that the pleural effusion has not re-emerged. And then we'll go from there. My biggest fear is that there is something beyond the effusion causing her pain. I just don't know. At this point, I can keep her somewhat happy during the day and in fact, we had a good morning.

The bottom line is that we have to keep her moving - the laying around is not good for her effusion and her partially collapsed portion of her left lung --- it needs energy to be exerted to pop back out. So I plopped her in the middle of a bunch of toys this morning and tried a more hands-off approach as opposed to coddling the entire morning (which I am glad to do, but at this point, she needs movement). She did pretty well this morning but this afternoon was rough. Thankfully, Ryan is being a super champ and is just toddling around and talking to himself like crazy. For the most part, he seems over his super-clingy state that he was in when we were back & forth to the hospital so that's good.

And to add a little craziness, I am sort of back to work. It's time. So I am trying my best to get in some coherent work during their naptimes and catch up on all I've missed the past few weeks. Grateful to have an escape to think about something larger than myself for now.

So I guess what they are saying now is that we are on the "slow trajectory" of recovery. You never know how kids are going to recover. Toddlers are especially difficult. They are ingrained in their routine and no matter what people say, their memory is decently strong, so they recall the smell of the hospital, the look of the doctors, etc. Now, they may not remember it 20 years down the road (and thank God for that) but for now, it's a lot for a little person to take in. I guess I got my hopes up because everyone said how quickly babies recover - and I sort of though Q fit that mold being so fiesty and all. But this is her path and we will continue to walk it with her and carry her whenever necessary.

Will continue to keep you posted. Love you all.

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,