Well, we've gotten through our first week home with Quinn, so I thought I'd give everyone an update. He's doing really well at home, and we're still adjusting - it's not quite like having a regular baby at home - wake at all hours and feed - we have a very specific schedule we have to adhere to, and very specific amounts of feeding and such, every 3 hours.

    So 12, 3, 6, 9 we're feeding at least 60-70ccs of breastmilk, which I pump, because he's still seemingly too weak to breastfeed, although we try to practice anyway sometimes, at least once a day, to see how we're progressing. He latches on for longer each time, but in VERY small amounts, because he tires easily and gets fussy quickly.

    8am, 4pm and midnight we change his wound dressing and he gets his Captapril, which he will be on his whole life, unless technology advances to something new. It just may. 8am he also gets his lasix and digoxin, and 8pm digoxin as well. At some point he also gets half a baby asprin, we give him in one of his feedings. That's only once a day, though.

    So you see, we have a very specific regimen we follow. Sleep is a whole different thing now, I get it in 2 1/2 hour increments at the most, but I'm doing all right with that, because he DOES sleep through the night, just gets a little restless when it's time to eat and then I gavage (tube feed) him and he's right back to sleep. It's the one advantage of gavage as opposed to nippling.

    It's so good to be home with him, though, and just sit there watching him sleep. Josh still reads Hary Potter to us, as we haven't finished the 4th book yet, and we love that. we're still being totally hermetic, not really any visitors yet, as we are still establishing a routine, but it seems to be okay with everyone, because its flu season anyway and everyone's sick and couldn't come and visit anyway. Works out well.

    I want to THANK YOU THANK YOU THANK YOU everyone who brought us food, mowed our lawn (I STILL don't know who did it), and offered to so such things, it really has made a diffrence to us in being able to take care of Quinn, less to worry about outside of him.

    Josh goes back to work Monday, so we'll be taking this week to get used to the "just Mommy and Quinn" routine - shouldn't be so difficult, he only fuses when he's hungry or needs to be changed, and is sleeping most of the rest of the time. He wakes up about 2-3x a day and looks at whatever - me, Josh, the ceiling, his toys, but is so quiet.

Friday, December 15, 2000

Quinn is doing well. He had a home health visit today and weighed in at 9# 10 oz. He's gaining weight, and that's what they want. He's eating, he's sleeping....no smiles yet, but as he spent his first month of life in the hospital, I might expect that will come later than normal. We're working on loosening up his arms and legs - legs mostly. They're really stiff and don't stretch out all the way, and if it doesn't improve by his next doctor visit, which is January 3rd, his pediatrician is going to refer us to a physical therapist.

   He's gotten Zantac added to the list of drugs he takes, cos he was having upset tummy every time we fed him. It seems to be doing the trick, he's taking his food much better now.

    He's showing a definite preference for Mommy - Daddy had his first evening alone with him when I had to run an errand and it was a bit difficult, Quinn was fussy the whole time, just wanted Mama. He was fine when I got back. Josh understood, though.

    That's all I can think of - we get a cardiac cath in about 2 months and then we'll talk about the second surgery. It's wonderful to be home, even if we never get to leave. Hope everyone is having a wonderful holiday, drink some champagne for us!

Friday, December 22, 2000

Well, Tuesday I took out Quinn's NG tube. I did it because he was having so much trouble with it, he'd scream every time we even opened it, and I had had enough of his being in pain all the time. Since I knew it would be easy to get it back in if we needed to, I took it out. and it's been out now for three days. He has been eating more frequently but less volume, which I know in time he will overcome, with practice with this new routine.

He has been feeling worlds of better since the tube came out - he's more alert, more active, awake longer and more frequently, and happier - he's actually started smiling! So my home health nurse, Angel, couldn't really be too mad at me for doing it, although she was mad that I hadn't told anyone! I thought since he was doing well I'd wait until her visit today, since every other time I've called the cardiologist or doctors they've basically told me false alarm, no big deal, etc. So the cardiologist has us recording his exact intake and what time, and we're adding a supplemental powder to his breastmilk to ensure the extra calories. We're also going to see about an OT to make sure his jaw is strong enough to feed well and that he's doing okay in that respect and developmentally. They make house calls, too!

What else - did I mention he's smiling? Not all the time, but he's smiling for me sometimes and I think he's getting the hang of it. Ah, nothing is more beautiful than your own child's smile. Nothing.

And happy 2 month birthday to Quinn on the Winter Solstice!

Mon Dec 25, 2000 7:30pm

Quinn is doing wonderfully. I don't remember if I told everyone I took out his NG tube for a few days, but I did. We tried, but it didn't go as well as planned - he lost 2 ounces so we had to put it back in, and now he's back up and then some - he's a whopping 10 pounds!

We had a great holiday - Xmas eve, his Gigi and Papa (Josh's parents) and his Aunt Kirsten came over and gave us a wonderful holiday - complete with a new camera (with which I have promised to take many many photos of Quinn and of course upload them to his page), good eats and wonderful company.

On Christmas day Grandma Freda (my mom), Uncles Chris and Eric (my brothers), and Great-Grandma (Nana) came to visit, making our holiday complete, also of course bearing wonderful food, gifts and company. And to think we thought we might get away with not celebrating Xmas just because we cannot leave the house! We are blessed to have such wonderful families, that they wouldn't let that happen! I hope all of you had a wonderful, wonderful holiday, and that the New Year brings much joy and happiness - it's about time we got rid of this old one!

Monday, January 15, 2001 4:07 PM

Happy MLK day!

Quinn had a visit with his pediatrician AND his cardiologist last week, and he's looking good. Maybe a little behind in physical development, although at this age it's so hard to tell. We had an interview with First Steps, a program that can provide developmental help for free and at home, it's for kids with physical or mental developmental disabilities, and because of his heart and problems with leg stiffness and eating, he qualifies, so in about a month or so, we wil have physical and occupational home therapy for Quinn.

    Let's see, what shall I report? Quinn is developing well  - he's smiling, talking to us, and is even beginning to reach for things, although his motor control is not yet fine-tuned. He loves to sit in his little bouncy chair and coo at his toys. He even sat in his swing for the first time yesterday, and seemed to be fascinated by the experience. He was swinging for about a half hour before he got tired of it and wanted to do something else.

    We go in for his pre-cath workup on the 29th, where they'll let us know what is involved in the cathater and tell us how to prepare, etc. Then his cardiac cath is on the 13th of February. It's where they cut a little incision and inject dye into his heart to see how the blood is flowing, which they do in x-rays. This will tell them when he's going to need his second surgery, and what he'll need done then.

    So we're just enjoying the time at home while we wait. I am hoping the surgery will be scheduled sooner than later, because the sooner the surgery, the sooner we can go outside and I can show Quinn the world around him. We'll still have to be careful, but he will be able to begin to experience life outside of our house, and I just cannot wait!

Thursday, January 18, 2001 9:11 PM

What an awful experience. Parents, I must warn you - if your doctor EVER says, "Let's just do an upper GI just in case," unless you realy feel something sould be wrong, don't go through with it! It is an awful experience, all around. So awful I'm going to share it with all of you. (For those on the HLHS list, bear with me, I'm sure many of you already know about this).    

First, we arrive 1/2 hour early, as they requested, for our appointment, which is at 1pm. Oh, let me interject here that the GI doc we saw 1 month ago assured us this procedure would likely take about 2 hours. Count them - TWO. This is important for the rest of the story.    

We go to radiology, where we were instructed to go, and after convincing them to get us a private room because of Quinn's weak little immune system, we are promptly informed we have to go and register - in the ER registration, where all children with all manner of illnesses are. Well, that wasn't going to work for us, so when I was about to inform the techs we were leaving the hospital because this whole venture was a little too risky (and I wasn't really sure Quinn needed to undergo this procedure in the first place), the tech who was to do the test offered to watch him while I went to register. Okay, fine, so I did.    

Then he goes in with her and has to swallow (this is when the tube becomes a good thing) barium, which for anyone who doesn't know is this nasty chalky stuff they use to see how the GI tract is working via x-rays. It shows up white, so they always know exactly where it is. So he does well at first with the barium, then nope, out it comes, and guess what, he has to take it again.    

Then come the x-rays. The x-rays are to watch the barium go through him, to make sure he's digesting properly. Once it's all the way through, the test is done. Only they omitted that little detail in the description of the test. Okay, they're going to x-ray him every half hour to track the barium and make sure he's profusing well. I think couplea x-rays, couplea hours, okay, not so bad.    

WRONG! After 4 hours and several x-rays, and waiting with a crying child who hasn't eaten since 9 am, and trying to make him comfortable when I'm hating it as much as him, more every second, they keep coming out and saying to me, "The barium just isn't moving through him. We'll need to do a couple of more x-rays. One now and one in an hour." I ask does this mean anything, they say no, it's pretty normal, some kids just move more quickly than others. Well, duh! Quinn has maybe one poopy diaper a day, I could have told them that and I could have done it in the comfort of my living room over the phone!    

So, we were there for 6 - count them - SIX hours doing this test, and guess what they told us at the end of it?  I'll bet you already know, right? "Quinn has a bit of reflux," (yes, that's why he's on Prevacid) "Everything looks fine."    

So, at the end of SIX hours of a test designed to see if he was digesting properly (which I already KNEW he was), they tell me he has reflux (which thank you, I already knew) and he is digesting properly. Uh-huh. Okay, um, thanks? And the GI doc just INSISTED he needed this test. I even called before we came JUST to make sure, because I was really feeling like he maybe didn't really need it. Moms, trust your gut, you know your babies.    

Thank you for taking the time to read my little rant, I just couldn't believe the day we had today. Of course, it made us both appreciate being confined to our home just a little more, because the comfort of home in contrast with the waiting hall of a hospital, well, there's just no comparison. So if I took anything good from this day it was that. And now we ALL know, with scientific proof, what I knew all along, (say it with me this time), "Quinn has reflux, but he is digesting okay, and everything else looks fine."

Tuesday, February 13, 2001 9:38 PM

Quinn had his cardiac cath today, and all looks good. The cardiologist was concerned that he may have had a narrowing of the aorta, since all the other Norwoods they've had recently (and they had 6 within a month of Quinn) have had it. Had that happened, they would have needed to balloon his aorta, but our Mighty Quinn once again proved his namesake and there was no narrowing, so he just had a straight cathater, uneventful, which we like!!

    He came through well, looking good as ever - a little blue but gained colour as the day went on and the morphine wore off. He's still in the hospital tonight, just to be safe, but will be back home tomorrow late morning or early afternoon. We are so proud of him, he has done so well in the hospital, tolerating all of the poking and prodding he has had to undergo while there, not really fussing much, just sleeping.

    We talked with the cardiologist about when his surgery may possibly be, and depending on his schedule, he may have his surgery as early as next week, but possibly March 2nd - just depending on when there's an opening in the cardiothoracic surgeon's schedule. So two weeks at the most!!! Wahoo!!! Pretty soon we'll be free to GO OUTSIDE!!!

    We won't know for sure the date, of course, until after Monday, because that's when the whole team (the surgeon, the cardiologist, the nurses, etc.) have their meeting to discuss the results of the cathater and decide and do the scheduling, so the dates I mentioned are tentative, but they sound good to me. The sooner the better, I say, let's get this second surgery over with, then the third won't be until he's about a year old, so we'll have some growing time in between.

    We're still having some difficulty with vomitting some feeds and such, but we are working on that, and hopefully that will improve with the Glenn, as well. Our fingers are crossed.

Friday, February 16, 2001 6:51 PM

Wow, I just had a very interesting day. I got a call from Quinn's surgeon's assistant saying Dr. Fiore wanted me to call him at home because he wanted to speak with me. Okay, so I call and he asks me about Monday for Quinn's surgery, because Dr. Balfour (the card) had told him we were ready, and seemed to want it sooner rather than later.

    Quinn will be 4 months old Wednesday and already weighs 12# 6 oz, which as I understand it is bigger than most of the Norwood babies at his age. What that means in surgical terms is that he's big enough and healthy enough that the surgery can be a go if we wish it. They (Cardinal Glennon Children's Hospital in St. Louis, MO) usually do the Glenn at 4-6 months, but Dr. Fiore said because of Quinn's weight and good health they like sooner than later, just because the longer you wait the longer it allows for something else to go wrong, like desating or the shunt closing or narrowing of the aorta or blockage of the shunt, etc. Not that those things WILL happen, mind you, he just likes the odds of sooner, although of course there are risks either way. Of course there are, this is open heart surgery, but we knew that.

    So he says let him look at the films from the cath again with the card and he'll call me back this afternoon and let me know for sure. And he did, and Quinn's Glenn is now scheduled for this Monday!! I am both excited and terrified.

Tuesday, February 20, 2001 8:13 PM

Quinn had his Bi-Directional Glenn yesterday and so far, he is doing fantastic. The whole day was the longest day - we got there at 5 am and were there until 8 pm - but it was uneventful, and that was what we wanted. He looked a little peaked when he came out of surgery, but not nearly as bad as the first one, when he was on that paralyzing medicine and looked so ethereal. And today he looks like himself, just with many lines and wires coming out of him. he has the usual drainage tubes and the IV lines running into him with 9 different fluids and meds, then the pacer wires and the foley cathater....

    He was extubated this morning from the ventilator and did amazingly well - his blood gasses actually were better OFF the vent than on, which was very impressive. Their main concern now is keeping his blood pressure down, not just when he sleeps but when he is awake, so they have again started his Captopril in addition to everything else. He seems as comfortable as can be expected, and in a couple of days he ought to be feeling himself again, with not so many lines in him, so we can hold him and play with him like we ought to. For now they just try to keep him resting. Keep those prayers and love and good energy coming - it's working!

The First Month

HLHS Links/Mommy's Homepage