Quinn is home and has been for the last 2 weeks, where he is recovering nicely. We've been having a bout with painful gas for the last few days, which wakes him at all hours of the night, and today we have been having vomitting, but we're not getting freaked out yet - we're going to watch him and see what happens.

    We spoke with the OT today, who just so happens to be a friend of mine from a way back, and she's coming to do an evaluation of him on Saturday to see what we can possibly do about his feeding issues. We are so excited to gt started with this. Since he's been on the tube his whole life so far we're not sure what we can do - the doctors want him gaining weight and ingesting a certain amount of calories, so we cannot just let him get hungry enough to eat, and that's what is killing us. We're required to feed him every 3 hours 90-100ccs and we know he wouldn't eat NEAR that on his own, so our hands are tied. Hopefully Ann (our OT) will have some kind of miracle up her sleeve (no, I'm not holding my breath, I AM realistic).

Josh has been making Quinn laugh out loud lately, and that's wonderful to hear - Quinn tends toward the serious side so it's like magic to hear him laugh. Babies are supposed to laugh. Sometimes I look at him and he looks like a little old man - he has been through so much in his little life, and will go through much more, it breaks my heart to think about it. I wish it was me instead of him.

Monday, March 12, 2001 7:42 PM

We had Quinn's follow-up PC visit today. It was a good visit, overall. Quinn's health is good for his condition, his saturation was 82% (85% at home), and he only had to undergo a chest x-ray, no EKG or Echo - yay! His weight was wonderful - 13# 10oz, a 13 ounce gain from 10 days ago! Looks like the supplementing is really making a difference.

    We switched to soy formula as a supplement to the breast milk, as he was having really severe gas, and painful - it seems to be making a difference after only a couple of days.

    We got down to the business of talking about his feeding  - something I've been waiting to do - he's done with his Glenn, he's getting stronger, so I say its time to gt agressive with the feeding issue. Dr. Balfour said we can cut out the 3am feeding if we up his other feedings by 10ccs. If he takes well to uping the feeds, next week we up to 120 ccs (4 oz), although maybe more gradually,  - 110 next week, 120 the following week - and we move feedings to every 4 hours so he has a chance to get hungry, and possibly nipple more. I'm also going to try cereal once a day, or maybe even fruit - he may like eating if its something sweet. We'll see. We start OT soon as well, so maybe can work on really getting aggressive - this boy needs to eat!

    So all in all, things are looking good with his heart, although he does still have the tricuspid regurgitation, whch puts added pressure on his heart and causes it to work harder than it "normally" would, even in his condition. We're praying for shrinkage of his heart now, no more enlargement. Enlargement would mean failure, and more surgeries, so send good energy toward shrinkage, please.

Sunday, March 25, 2001 8:44 PM

Well, I'm sure you're all wondering how Quinn is doing with this eating issue of his, and I am sorry to say we have made no progress as of yet.

    Six days ago Quinn decided he'd had enough of the tube and he pulled it out, completely. Okay, I said, let's see how you do. Don't want the tube? Great, neither do I. So eat. And he did, he did really well for not having ever had to eat to sustain himself. He took in exactly half of what he needs to eat, 15ccs every hour around the clock. Not enough. By Saturday he was showing the beginning signs of dehydration, so with the pediatrician's blessing, we had the tube put back in. Foiled. We were so excited to give him the opportunity to show us what he would do, and he did, just not enough. And the funny thing is, he was quite happy. No fussing, no upset, no signs of discomfort or anything of the sort, just simply didn't want to eat enough.

    So he's back on the tube, back to the same old routine, and Monday we have a PC appointment and are going to discuss a G tube. For those of you who don't know what that is, it's a tube that goes directly into the stomach from the outside of the stomach, instead of through the nose and down the throat like an NG tube. It has a little button on the outside which you attach the food tube to, and that's how he eats. The benefit is no tape on the face, nothing hanging from the face, nothing to be able to rip out when Mommy and Daddy turn away for 10 seconds. It's a more long term solution, which is what we're thinking Quinn needs right now, especially since he's getting older. Don't get me wrong, I haven't given up - the boy will eat - one day, he will eat. He already is starting baby food and loves the apples, peaches and green beans, so we're making progress there. It's just that with the NG tube it makes it harder for him to keep the food in and harder for him to nipple or eat because that darn tube gets in the way.

   Another dietary change we have made was we have switched from breast milk to soy formula to curb the gas and vomitting. In one day it made a drastic improvement, which was why we decided to switch entirely. I hate to do it - my whole plan originally was to do everything naturally, and it's been foiled at every turn so far. It just makes him happier and more comfortable, and that is gold to a mommy. So I'm learning to accept this less natural, more technological lifestyle we seem to be creating for Quinn. Just goes to show you life is what happens while you're making plans.

    We start OT and PT soon, which we're sort of excited about. I say sort of because Quinn has developed a severe stranger anxiety and bursts into tears at anyone who isn't myself or Daddy. So any visits are a challenge. On the upside, though, we're going to get started helping him to catch up to where he's "supposed" to be developmentally (whatever that means).

    So that's this week's update - sorry it took so long, I don't get much opportunity to check email these days - I'm too busy playing with my pride and joy, my little miracle boy. What a long, strange trip it's been, and will continue to be, I'm sure.

Saturday, April 07, 2001 10:20 PM

Well, I'm not sure what to tell. Quinn is making large strides in his physical development, DESPITE the fact that we STILL haven't had any PT or OT yet! We keep trying, but every time we have something scheduled, the PT calls and says she cannot make it for whatever reason, so it hasn't happened, but Quinn has gone ahead and made his own breakthroughs!

    He is able to hold hid head up at a 45 degree angle when on his belly (before he couldn't even tolerate being on his belly). He's getting better at grasping and holding objects. He constantly has his hands in his mouth - pre-teething, I think. He loves to sit up with help, and just look around at things. With these babies, little things mean alot, you know.

    We had Quinn's first outing to somewhere other than the hospital or a walk around the neighborhood today. It went horribly. He has such anxiety about anywhere that isn't his home, since his usual outings consist of going to the hospital until today. He screamed the whole time until Josh had to take him outside. When he got away from the people he quited down until a train passed and then he screamed bloody murder again. We didn't stay long. Thank Goddess Grandma's house is only 5 minutes from home - he was fine once we got him home and into familiar surroundings, but he was fussier than usual for thre rest of the day. To make it all worse, I am coming down with some virus Josh brought home from work and cannot go near Quinn until the antibiotics kick in (2 more days). So I couldn't even hold and comfort him.

    Eventually he will get used to going out, I hope, but until then outings are going to be short and sweet for us. Little by little we'll work on his tolerance. I know it is hard for him. It's funny, the last visit he had to the PC he was amazing - only cried during the x-rays, and was great the rest of the time. Then his grandparents came over and he was good for them, too. But as soon as we take him somewhere else, watch out! He has such severe stranger anxiety, and the more people there are at one time, the worse it is. And when I say stranger, I mean anyone that isn't mommy or daddy. It's quite an adventure.

    At home, though, Quinn is wonderful. He laughs and plays and does new things every day. He loves to just sit and talk to himself and his toys, he loves to be interacted with and to be held and cuddled. He is a wonderful child, and we are so blessed to have him in our lives, for however long he decides to stay with us. He is truly our little miracle boy.

Sunday, April 15, 2001 10:18 PM

We are happy to announce that Quinn had his first successful outing today - Easter Sunday. We took him to his Aunt Kirsten and Uncle Bill's house to be with the whole family and see his cousins (who are 2 and 3 years old) for the first time since the days after he was born.

    We were worried because of his history of stranger anxiety that he wouldn't last more than a half hour and we'd have to make our visit ever-so-brief, but he actually lasted a whole 3 hours, and we were able to have a wonderful visit with the whole family. He LOVED his cousins - probably because they're close in size to him and not so intimidating - and they simply doted on him the whole time. It was beautiful to watch.

    We are so happy, it gives us so much hope for being able to take him other places now and begin to go visiting more often, since we now know he can handle it.

    In other Quinn news, we visited with Dr. Martin Keller, Quinn's surgeon for his G-tube placement, to discuss putting in a G-tube. Because it was Good Friday his secretary wasn't in to actually schedule the surgery, but she will call us Monday and let us know - it will either be late this coming week or early next week for sure. He also has to have a fundoplacation (sp?), which is a separate procedure but is done through the same incision. Quinn has such bad reflux that Dr. Keller said he wouldn't do the G-tube without the fundoplacation, because it would make his reflux off the charts if he doesn't. What that procedure is is he takes a part of the stomach and wraps it around the esophagus and then stitches it to itself. It acts as a valve for the stomach which tightens to keep food in when he "eats". Sounds fun, right?

    So Quinn will be in the hospital after thias surgery for about a week, the surgeon tells us. They have to make sure it begins to heal correctly, that he takes his diet okay, and that his medicines are adjusted accordingly. He said it is a strong possibility that Quinn will not have reflux at all after this procedure, so he may not be on the Prevacid and the Reglan anymore. So all of that takes about a week. Ick. Believe me, a week in the hospital is like a lifetime sometimes - it's horrible. For Quinn and for us. But it means no more tape on his sweet little face and no more breakdown of his skin. No more socks on his hands and no more tube up his nose and down his throat! Worth it.

    So he'll have this long tube they use as a starter in for 6 weeks, until the wound heals completely. Then they pull that out and replace it with a short tube attached to a "button". It looks like the closure on a beach ball - the part you blow up. That hooks to a longer tube which hooks to the food. And that's how we'll be feeding him. Directly into his stomach. Hopefully this will help him to learn how to eat through his mouth, believe it or not. we shall see.

Friday, April 20, 2001 8:59 PM

Quinn had his G-tube placement and Nissen fundoplacation on Wednesday. He came out of surgery beautifully, right off of the vent and into the recovery room, and from there to PICU. His first night was rough, he was in pain and crying and they had to give him morphine to calm him down and get him to rest.

    The second day was better, he was in pain but rested well when we held him in our arms, ad by the end of the day we were confident we could go home and he'd be okay through the night. We were correct, he slept well with minimal Fentanyl for pain.

    Today he looks wonderful - so much so they booted him out of PICU and sent him to TCU, where the rooms are smaller, the roommates are bigger, the nurses are more scarce, and there is noise noise noise all day and night. To give one an idea of the difference, PICU is like flying first class and TCU is coach. But what can we do - they wouldn't really be able to justify to our insurance company keeping us in PICU for the weekend, and they had 3 admissions they had to make room for, so we got the boot.

    The reason Quinn is still in the hospital at all is he needs to adjust to his new G-tube and they have to make sure he keeps his diet in and can handle the higher volume okay. He's already on Isomil again, continuous feeds on the pump, and tomorrow I think we'll be increasing his volume and hopefully by the end of the day trying for bolus feeds again.

    Dr. Keller, his surgeon, says we oughta be out of there by early next week and back home adjusting to the new way of feeding. His little face is healing slowly but surely from the irritation of the tape, and we have to keep his hands restrained so he doesn't rub his face or pull out his G-tube. Once we go home and have clothes on him pulling out the tube shouldn't be an issue, but right now, it's totally exposed and just perfect for baby hands to grab and pull.

    At any rate, our Mighty Quinn is once again living up to his name and pulling through with flying colors.

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