Quinn is home from the hospital, and has been since last Tuesday. He is SO much happier without that horrid NG tube down his throat. The first day we brought him home he was sitting in his swing just laughing and talking to himself, he was so pleased.

We've started taking him places now - a little at a time - he's been to the grocery store a couple of times and to the baby store. We've also taken him to Sunday brunch with friends and family, which was just a wonderful time. He is getting better and better about making public appearances, as long as we time it right.

His new favourite pastime is to sit outside on the porch swing with either of us and just watch the world - he has gotten to the point where when all else fails, this is the thing to do that will ALWAYS calm him down. He's my boy, all right, just like Mommy.

He's eating a jar of baby food a day and has begun to nipple a bit each feeding again - it's definitely a good start to learning to eat. He loves the fruit. I've tried to feed him peas and sweet potatoes and he'd have none of it. Can't say I blame him, I hate peas myself. He'll probably like them later when he can eat the whole pea.

Fri, 18 May 2001 6:52pm

Quinn is a happy little guy with his new G-tube. He's eating baby food, loves fruit, won't take the veggies, but at this point, anything he eats makes me happy, so I don't push it. He's not really nippling any more, but at this point I don't think that's really an issue - he is almost 7 months old and will soon be graduating to regular food anyway.

He's teething, but not fussily yet, just drooling everywhere and chewing on everything including his toes. He's doing really well progressing with his fine motor skills and cognitively is even a little ahead of his age group.

When he gets the button for his G-tube, which will be flush against his skin, we will begin to be more aggressive about PT in exercises for getting him ready to crawl. He's so sweet and so happy, we fall more and more in love with him as each day passes. I love just watching him learn and develop and explore the world around him.

Our daily activity, several times a day, in fact, is sitting outside on the porch swing and watching the world. He loves that so much.

We've been taking him out more and more places, too - stores and visiting family and such - little by little we are getting him acclimated to the rest of the world. He's still a little edgy in large groups but is making definite progress.

Fri, 01 Jun 2001 14:57

Quinn got his button today. That means no more tube sticking out from his belly, just a little button that only comes out about 1/4" if that. He didn't enjoy it, it hurt, but he's all better now and is resting happily.
Quinn has been asserting his independence lately by refusing to allow us to feed him baby food. When it comes time to eat, he clamps his mouth shut, smiles and shakes his head 'no' every time we get near him with the spoon. Some days we are able to get more food in him than others - luckily the baby food is just supplemental to his formula. I'm hoping this is just a phase. Cute as it is, I wish he'd find another way to assert his independence!
He's also teething, so on some days he's a little fussy. Those days we just take him outside and he's happy as pie - he loves the outdoors more than anything, even in windy and cold weather, he doesn't care. He loves to watch the rain falling on the ground or the birds and rabbits around in the sunshine. That's my boy, all right!

Thu, 05 Jul 2001

. Well, he's cutting teeth - he has one little one peeking up from the gums - it's about 1/4 of the way in now. There are 3 others just showing little nubs. So he's a bit fussy sometimes these days, but not very much so. He's doing very well in physical therapy, getting a little more accustomed to being on his belly and is now able to roll over from belly to back on his own, and from back to belly with very little help. That brings him that much closer to sitting on his own, and eventually crawling. He just has to get his balance for sitting, as he seems to have the strength there for it. 

What else? Oh, he HATES the heat, although I understand that most HLHS babies and kids do, as their ability to regulate body temp is hampered by the hard work the heart has to do all the time. So this summer we're spending a LOT of time in "The Pod" (our house). He likes to go out in the morning when it's cooler and sit on the porch swing, but he sweats quickly, so it's not for long. He even sweats in his sleep, with the AC blasting and no covers on (even if we DO try to put them on him he kicks them off). All in all, he's a happy baby, though, he loves to read his books, play in his Gymini, explore EVERYTHING he can get his hands on, pet the kitties, watch the world. His Gigi and Papa got him a Johnny Jump Up and he LOVES to play in that - he bounces so high, and spins around, and just laughs and laughs. It's just delightful to watch him play and interact with his world. We couldn't ask for more.

Thu, 12 Jul 2001

Quinn and I went to his cardiologist today for a routine check-up. No big deal, usually it's BPs and O2 stats, listen to his heart, take an x-ray, feel his liver, and questions, that sort of thing. Well, today we got
wonderful news!
To brief anyone who needs it, Quinn has, in addition to the heart defect of HLHS, a leaky tricuspid valve. Among other things it decreases the efficiency of his already overworked little heart, and causes it to remain enlarged. I hope that doesn't sound dramatic - it's not my intention.
Anyway, today Dr. Balfour looked at Quinn's x-ray and came out with a little bit of a surprised look on his face (at least I interpreted it as surprise - he has such a stolid poker face, it's really hard to read him). He said the x-ray showed that Quinn's heart had ACTUALLY gotten a little bit SMALLER!!!
This is amazing news - the most we really hope for is no further
enlargement, but for it to actually SHRINK?!? Amazing. We are SO happy! His stats were 92, which for him is quite high, as well - he's usually around 86 tops. I was just amazed. So much so I obviously had to share - this is SUCH good news! This means his heart is working just a little more efficiently!
Woohoo!!!
<Mommy does a happy dance>

Sat, 28 Jul 2001

Quinn is 9 months old now and weighs 18# 7oz at last weigh-in. He's 29-30" long and is a happy little man. Our newest adventure is "eating and how do we get him to do it".
Since Quinn has a Gtube he has never learned what hunger is nor how to
satisfy it - with food! We've been getting Occupational therapy for his fine motor skills, which are fine now, and Physical Therapy for his gross motor skills - he's getting there - but we haven't really addressed his inability to eat, even though it has been a concern for a long time now. So this past week I got his Ped. to okay OT for eating issues and off to Cardinal Glennon we went.
We're doing a new routine for eating. We put him in his high chair at mealtimes every day. We give him his spoon, a graham cracker or cookie or some such thing, pour some baby food on the tray and let him go to town. He loves it! Not much food gets into him, it mostly ends up ON him, but it's a start at learning all about eating. We'll go back in two weeks to see a dietician and find out how much we can get away with NOT feeding him so he can learn hunger as well. We're very excited about this. On other fronts, Quinn is doing wonderfully with new people and places, and seems to have mostly gotten over his stranger anxiety, something I wasn't sure would ever happen, given his start in life. But he warms up to people pretty quickly these days, giving them smiles and playing with them, and he has even let his grandmother baby-sit him ALONE TWICE! It's so exciting, knowing he can be okay without Mommy or Daddy around, and that we can maybe even start going places as grown ups now!

Thu, 30 Aug 2001

I've been putting this off for awhile - so much has changed in Quinn's eating in the past few weeks!!! The dietician cut his intake in half via the G-tube, and for the first few days, it was ugly. He was fussy, didn't know why he was uncomfortable, had much less energy (he still does) and became very clingy. We kept trying to feed him, 4 times a day, through all of this, to no avail. But then something happened. He started gnawing on those graham crackers and teether cookies we kept placing in front of him, and he started drinking from his sippy cup more often, and he even started taking baby food from us! Now, he's not eating anywhere close to what might sustain him, and for all those wondering, it will still be a long time before that tube comes out, but this is a great stride he's made, eating even this much. He's even gagging less when he gets a bite in his mouth - he still spits it out most of the time, but sometimes he lets it dissolve and swallows it. It's just amazing - we are so proud of him!!! I just had to share.

Saturday, October 13th, 2001

My but it's been a long while since I've sent an update. Quinn is making great strides in every area imaginable. 

Eating: He is always willing to try new things, especially if Mommy or Daddy have it. He likes almost everything we feed him, which is wonderful - he even likes broccoli and green beans. Carrots not so much, though. He's getting 3 more teeth in for a total of 5 and that enables him to chew a little bit, which helps him to eat more. This is all good. He does not eat anywhere near enough to sustain himself, but he eats, and this makes us happy happy happy.

Quinn sits perfectly on his own, and is getting better and better at his reflexes like catching himself when he falls over and such. He LOVES to stand up, and can even stand on his own against a coffee table or sofa. He sometimes takes little steps at our urging, but is not really anywhere close to being ready to walk yet. As far as crawling, he may still do it - he seems to really want to be mobile, and is even making little motions on his own sometimes to that effect, trying to move himself before he just gives up and cries out for help.

He looks like such the little boy these days - he's in 18 months size clothing because he is so tall, and he just looks so handsome in it! I love dressing him up in his little flannel and sweats like Daddy, and his little overalls that Daddy loves so much. 

As always, Quinn LOVES to be read to, and it is his favorite activity of all time. We just haven't had a full day unless we've read all of his books at least once - from pop-up to Dr. Seuss to lift-a-flap. He helps turn the pages and keeps the stories moving along.

Quinn is going to be a year old in just one short week - the 21st of October - man, have we come a long way! What a little miracle he is, just thriving and loving life, when he fought SO hard to be here in this first place. I am so grateful for every moment we have together, I am so grateful for him and all that he is - he is truly my hero, my Mighty Quinn.

Well, it seems a lifetime ago our little precious boy was born and at the same time just like yesterday. I don't have to wax philosophical on how much he's come through - you all know. We are so proud and so amazed by him every day, and celebrating his birthday with all of our family and friends this past weekend was such an honor. He even got a large package mailed to him all the way from Utah right in the middle of his party - it was wonderful.

Despite my vow not to give him sugar, I made him a little cake all his own shaped like a star (he is my superstar) - chocolate, of course, his favourite - and he had the MOST fun devouring it as he smashed it all to bits and mushed it around in his hands. It was beautiful. Okay, a little waxing here: I just kept thinking how a year ago we thought this might never be, and there he was, having the time of his life. A parent couldn't ask for more.

We got another wonderful surprise as well: Josh's parents, who had originally told us they'd be in Florida for 10 more days, showed up at his party to celebrate with us. Josh was overjoyed, as was I - it made my husband SO happy to share this with his parents. We really are all a close family and he was a little disappointed they weren't going to be able to be there, and BAM - they walked through the door - that was present enough, and they brought gifts anyway :-)

It was such a wonderful celebration, and now we have so many toys around the house there's no room for us ;-)

Brightest Blessings to all of you

Thu, 20 Dec 2001

It has come to my attention that it's been awhile since an update. Well, no news is good news, right? Absolutely.

Life with the Mighty Quinn is amazing. He's 14 months old now, and is really taking life in wholeheartedly. I have the greatest job in the world- being Quinn's Mommy and Josh's wife.

Quinn is still getting physical therapy but is going to stop Occupational therapy at the end of the month - he is really just caught up enough that he doesn't need it anymore - yay!!! PT has been decreased to twice a month for consult purposes, as well - he's catching up rapidly!!

He still doesn't crawl, but he IS walking ALL over the house with help from us - he grabs our fingers and treks all over the place! He loves to chase the kitties and his daddy all around the house, giggling the whole way.

He is gaining a full grasp on  communication if not yet language, and has almost no trouble at all letting us know EXACTLY what he wants at all times. He points and makes a noise and we oblige!!

He STILL and probably always will LOVE his books and to be read to all the time. He even knows the by title and by sight, and lets us know which ones he wants read to him at what time!

We're actually looking forward to the holidays this year - we have so much to celebrate. We are so blessed. Thank you all for your love and your support. Hope you all have an amazing and happy holiday. I have to cut this short, as Quinn is up from his nap and ready to go!!

Mon, 04 Feb 2002

It's been awhile, so I thought I'd send an update for those who may be on the edge of their seats wondering. Quinn is now 15 months old and is as happy a little guy as ever. He is learning so much every day it is just so wonderful to have the privilege of being a part of that.

He has been using us as help to walk all over the room for awhile now, and yesterday for the first time ever he was independently mobile - all by himself!!! He didn't exactly walk, nor did he exactly crawl, more of a combination of the two. I asked him to get his ball and he got up on all fours, hands and feet, and went forward about 3 feet - and I got it all on video!!! No one helped him, he was totally on his own, and he was as proud as we were at this new discovery of his. Any day now he'll either be walking or crawling or both. I always thought he might walk before he crawled, but at the rate he's been going I think he may discover the ability to do both at the same time. He's already been pulling himself up onto furniture and sitting himself down all on his own, and then yesterday this - any day I'll be getting out the baby gate and trying to catch him!

We're just SO proud of him - he's come such a long way in such a short time, and I am so thankful every day to have him our lives. It can be easy to forget that we are by no means "out of the water", as he still has the Fontan to undergo at about 30-35 pounds. And his heart is still fragile - but he really doesn't let it stop him - its more we have to notice when he begins to huff and puff and we take him and do a quiet activity to rest his heart.

He's just amazing. And as for speech, although he has not said more than "mama" and "dada" deliberately, he certainly has a vested interest in us telling him the names for things ALL the time. He will point to an object or a picture and make a noise that tells us he wants us to tell him what it is. We tell him and he gets SO happy. He gets it, though, he really does, and soon I am sure he will be making the words he hears so often from us.

So I am thrilled to be telling of his wonderful progress, and we are SO blessed to have him in our lives. Every day is a gift with Quinn Maxfield Keller in it.

Wed, 27 Feb 2002

I know I just recently sent an update but Quinn has made even more progress, calling for yet another bragging rights update!

Quinn is crawling!!! Many of you already know this, but he has been crawling now for a couple of weeks and we're just SO proud of him. He still prefers help so he can walk rather than crawl, but for practical purposes he will crawl anywhere he needs to go!

He has also learned to get himself all the way up the stairs without help! So we have installed a baby gate at the bottom of the stairs so he doesn't do this when we aren't looking - he has already done this once! Just amazing, our Mighty Quinn - how far we have come.

I may have mentioned this in the previous update, but we have cancelled PT altogether, as he is doing so well all on his own, and his PT didn't seem to think it was at all a bad idea. She is rather impressed with him as well.

What else? Well, that's all I can think of - our next PC visit isn't until March 14th and that's just a well-baby checkup, so no real news there, either. The only thing we are having any issue with is his constantly recurring battle with constipation, which I am hoping to find SOME sort of effective cure for, and as of yet have not. His little bum keeps getting all these little fissures that HURT when we wipe him, because of the backup and then prune juice relieving of it...

But we're good - he's happy despite all that and I continue to be ever-grateful for him every single minute of the day.

Sun, 10 Mar 2002

Well, we cannot go having things look 'normal' around here TOO much now, what would people think? I mean, we have a reputation to protect and all.

 There we were thinking we were having a a relaxing, lazy Sunday, when all of a sudden I hear expletives coming from the other room. I go in to see what all the fuss is about (we really make a point to NOT curse in front of Quinn, so it had to be a big deal), only to find out Quinn's G button has fallen out! There it is, laying in his onesie, complete with a little hole - the culprit. 

Now, here I must interject for those who do not know, when a G-button falls out one has exactly ONE hour before the skin on the surface begins to close up, thus making it necessary to take a trip to one's local hospital and have surgery place a new tube. Not knowing how long the button had been out, we tried to insert a new one. No luck, it wouldn't go through, so guess what! Off to the ER. Yes, this being Sunday we had no such luck as just being able to run into the clinic or anything. No, we always make sure these things happen on the weekends when it will be necessary to be seen in the ER instead. 

So, not to bore you with details, surgery had to give him a local anesthetic - 5 needle sticks in the stomach around the already-sore area - yes, you can just guess the screaming that happened there. The new button was then inserted and off we went to x-ray and make sure no accidental tears in the stomach. All clear, so home we went - all took about 3 hours - a short ER stay in our experience. 

We had almost forgotten how to deal with the stress of being in the ER or the hospital - we did just horribly with it - got all cranky and snapped at nurses and fought with each other. We were SO good at this last year....

 Just goes to show you that one never knows. Quinn is happy and great again now that we're home and safe. He's older now and really knows what is happening and when we got there, he immediately knew where we were and started to freak out accordingly. I am SO not looking forward to when he's even older and even MORE aware of what is happening and has to undergo the Fontan. Today was quite a wake-up call. 

Tomorrow I think I will wake up even MORE appreciative of being at home.

HLHS Links/Mommy's Homepage