Thursday, October 26, 2000 7:19 AM

As many of you know, I gave birth to the most beautiful and seemingly perfect little boy, Quinn Maxfield Keller, on October 21st, 2000 at 8:01 am. He weighed 8 pounds 1 ounce, 20" long, long little fingers and toes, his daddy's nose and his mommy's round face and eyes and mouth. He looks like a little moon man, he is the most perfect thing I have ever seen.

   He was having trouble feeding the first couple of days and his respirations seemed fast. On Monday when the doula came back for our routine check to see how he was doing and how I was doing, she suggested we go to Cardinal Glennon just to make sure. When we got to the hospital, his colour had turned grey and bluish and his breathing was so labored, his eyes were rolling up in his head. They rushed him right away to the Newborn ICU. We waited.

   The nurse on the floor came in and told us the cardiologist wanted to speak with us, and at that time our doctor had also arrived to hear the news. He was born with a congenital heart defect, which essentially means a broken heart. The one he has could never work on its own, and had Judy not arrived when she did to check us, he may very likely have died at home. His condition is called Hypoplastic Left Heart Syndrome.

    What they were able to tell us at the time was that this type of defect is not genetic, nor is there any predetermined way to decide if one is at risk - it is random, and is formed in the first 30 days of conception, and unless there was some other complication in the pregnancy, there would have been no reason to look for it. And it is undetectable via regular ultrasound, they would have had to do a special ultrasound just to see if it was there. And usually it is discovered within the first 24-48 hours of life, because until then , the baby's heart has a hole between the two sides, which then begins to close. In a normal heart this is necessary, in a defective heart, detrimental.

His system had begun to go into shock, and he was in severe shock by the time we got to the hospital, which had begun to shut all of his other vital systems down, as well. so they had to put him on a respirator to breathe, as well as nitric oxide, which would open up his capillaries to oxygenate the body, since his had constricted. He is also on several medications to keep his other systems going.

So the treatment for this defect is basically a procedure called the Norwood procedure. It involves 3 surgeries on the next 2 years of life, one now, and if he makes it through that and lives, another in 6 months- a year, then the third around the age of 2. What this surgery will do is change his little 4-chamber heart into a 2-chamber heart that does all the work. He won't be able to be as active as other children, he'd get too tired too quickly, but he'd certainly be able to be as mentally strong and live a good life otherwise. IF he's even a candidate for the surgery, which as of yet we do not know, he still has some major obstacles to overcome to even qualify. And to live, this is his only hope.

The second day he was in the hospital he had a seizure, and is on medication to control seizures, but as of yet they are unable to determine the exact cause. They need to do an MRI of his brain to check for damage, which they cannot do until he is weaned off the nitric oxide, which ought to be today, Goddess willing. It's all been a waiting game, one big hurdle after another.

Friday, October 27, 2000 7:03 AM

Yesterday was a good day in the Neonatal ICU - we got good news twice around. The first thing when we came in we noticed he had been weaned off the nitric oxide, which meant he could get his MRI, and they old us he was scheduled for 11 am. Of course he didn't go down until noon or so, things never really run on schedule there except shift change and rounds, so we almost knew to expect a delay.

    Before he went down for his MRI one of the neurological med students came to examine him and after she did his eye exam with the flashlight, he decided to open his eyes for me for a little while. We cooed and talked to him and he kept his eyes open at least 15 minutes - we were so excited! He's so doped up he rarely opens his eyes, so to see him do so is a treat.

    So he got his MRI and we were told we wouldn't get the results until the next morning, so we prepared to wait again. A few minutes later the neurologist walked in and said it wasn't nearly what he expected - damage was slight and he can even grow out of it over time, and it was only to his motor coordination, but he'd surely be independent and cognitively he remains unaffected. We were blown away - we had been told earlier by this same man he feared the worst! And here he is telling us Quinn is free and clear! So to talk of doing the Norwood surgery is now a go.

    By no means are we out of the water yet. But Quinn's determination and fight to overcome all of these HUGE obstacles in his path is amazing...I've never seen such strength of will in such a small being. He is amazing. He fights SO hard, and he makes such large strides in such little amounts of time.

   So we talk to our surgeon, Dr. Fiore (sp), on Sunday at 4pm, to discuss our options for Quinn. The thing is, because his tricuspid valve is still regurgitating blood, it presents another obstacle for Quinn's little heart. Although it CAN be repaired, it is a major surgery on top of the already major first procedure in the Norwood, and it has never been done on someone so young as Quinn. That is a lot for him to have to try to fight through, and the surgeon will tell us more information when we speak with him on Sunday.

    I guess here's where all the sending of good energy comes in - we need that valve to cease to be an obstacle for him - any thoughts and prayers and love and anything you want to send toward that would be so greatly appreciated - whatever energy in the universe has been coming so far has been working for his survival. We just want to have more days like yesterday, and more cherished moments with our beautiful son, Quinn.

Friday, October 27, 2000 7:56 AM

I forgot to say the other wonderful thing that happened yesterday - I got to hold my baby for the first time since he's been in the hospital! Here are some photos

Saturday, October 28, 2000 7:31 AM

We had a good day yesterday, the sedative medication from the previous day had begun to wear off, and Quinn was awake about three or four times, his little eyes wide open, just checking things out. It was so beautiful to see his little eyes. We're just in a quiet phase right now, nothing pressing until tomorrow, although perhaps today he will be off the ventilator and breathing on his own, which is also good news.

Sunday, October 29, 2000 7:57 AM

Not much to update today - Quinn came off the ventilator yesterday and seems to be doing well - one of the medications he is on causes apnea (sp), so every now and again he stops breathing for a second, but he always starts again, so it's okay. In order to be ready for surgery, they have to get as many of his other systems in shape and working on their own as possible, which is why he cannot be on the vent until then. He also got his IVs removed, so he has significantly less tubes coming out of him, and he looks a little happier for it. He sleeps fitfully, the PGE (prostaglandin) he's on that keeps his heart valve open also causes him to feel fluish and get tremors.

    It's so difficult to see him in so much discomfort and not be able to hold him and comfort him.

    Today we talk with the surgeon to discuss his options, it's going to be a long day for all of us.

Monday, October 30, 2000 8:03 AM

Well, we spoke with the surgeon yesterday, and he gave us more information about the procedure itself, although he still isn't sure what he can exactly do for Quinn. Because of the level of complication of Quinn's heart defects, it makes the Norwood a much more challenging procedure to do on him. Normally kids with hypoplastic left heart syndrome have healthy working normal tricuspid valves, which they need in order for the surgery to be successful. Quinn's has endocardio cushion defect, also known as an AV valve, which means instead of pumping blood in one direction to the body, it also regurgitates it into the heart again, which means less total oxygenation to the body and brain. So that valve needs to be on its way to working correctly, and so far it hasn't shown signs of doing so.

    They are doing another echocardiogram this week to see if there have been any changes to the valve, which will help the surgeon to determine his strategy in approaching this procedure with Quinn. And we won't know until Wednesday what he thinks he can do. So we're waiting again.

    If he does do something, however, it may be as soon as Thursday or as late as next week - again, we won't know until Wednesday.

    So if there are people out there sending good energy and wanting something specific to focus on, it's improvement in his little tricuspid valve, less regurgitation and showing signs of leveling out to normal. For now, that's what I can tell you.

Wednesday, November 01, 2000 8:12 AM

Yesterday was an amazing day for all of us in the hospital -we got to dress up Quinn in his little Halloween costume, he looked so sweet- it's way too big for him, even though he tag says newborn, but it was so cute! Little pea pod...I'll post photos as soon as we have them developed.

    I also got to hold him again yesterday, which was medicine for both of us - he slept more soundly than he ever does in hid bed, and his stats were all perfect as long as he was in my arms...no alarms sounded even once, and that's saying something. He was in the deepest sleep I've ever seen him in without being doped up on something. Therapy for both of us. Daddy read Harry Potter and the chamber of secrets to us while we sat together. I was wonderful.

    Dr.Fiore, our surgeon, happened by as well, and said we're very likely going to do his surgery on Thursday, and he'll just try to fix his little leaky tricuspid valve while he's in there. This has us ecstatic, the sooner the better for surgery, then he can begin recovery. We'll be moving to the PICU after surgery, so we'll be in a whole different place then, with different rules and such, so I don't yet know what visitation will be like there. I don't know if they'll let us just sit by his side all day like they do in NICU and read Harry Potter to him. But if they'll let us, we will.

    If anyone is interested in reaing more about Quinn's primary defect and the Norwood surgery, here is a link:

http://www.dencats.org/heart/congenital/hlhs1.htm

Thursday, November 02, 2000 5:34 AM

Today is the day Quinn receives the Norwood surgery, and while the surgeon is in there, he may or may not fix Quinn's leaky valve (if it's something simple and obvious, he'll fix it, if not he'll leave it alone - he only has a little window of time in there to do it). He goes in really early, 7:30, and will have a long prep time, then surgery will be about an hour or so, and then he'll be in recovery. we won't likely see him today, although we will be there in the waiting room receiving updates every so often from Dr. Fiore's assistant, Barb. She's also going to take us on a tour of the PICU this afternoon so we'll know what to expect for Quinn. She's even going to show us another heart baby like him so we can really know what to expect.

   This is a very high-risk surgery due to his little leaky valve, so it requires extra special attention, and extra special energy on our part for him. Everyone whose been praying and sending good energy and such things, today is the day to REALLY make it count. Keep him in your prayers and Reiki and minds and such....

Friday, November 03, 2000 8:19 AM

Quinn made it successfully through surgery 1 of the Norwood procedure. He got right off the heart/lung machine and went to recovery. He's on a ventilator and has many many lines running through him, but his stats are really good and he looks like he's breathing easier and his little body isn't working so hard just to live. We got to see him last night for a little bit - we didn't want to cause too much of a stir, plus he's completely zonked out anyway.

    He's on little pain meds and sedatives for a while, open heart surgery takes a lot of healing and it's best he just sleep through it. He's now in the PICU and has a bigger bed, and at least 10 different things going into him including his IVs, meds, etc. He also has a couple of drainage tubes for blood and goo, which aren't too bad unless you really think about what they are. He looks like a little pincushion that's been run over by a truck. But he looks peaceful and again, his stats are really good.

    We got our morning wake up call today from his surgeon, who likes to call after rounds and freak out the parents. Fortunately, his nurse warned us about this, so we weren't too freaked out by him calling. He said he's coming to a bit and he's doing well, a little concern about his urine output but after giving him some lasix (sp) it all came out okay. He's stable.

   So now on Monday or Tuesday he'll close his little chest back up, then we'll have about three more weeks of recovery before we can take him home. And it's touch and go - he's by no means out of the water but he is on the road, we just have to monitor him closely.

   So for all those keeping him in your thoughts and prayers, thank you, it's working, just keep up the good work!! He's made it over another huge hurdle, now onward we go!

Saturday, November 04, 2000 8:13 AM

Well, our little miracle baby never ceases to amaze us. Today after rounds his surgeon called us to let us know how he is, and he told us that he's doing so well, they're probably going to close up his little sternum this weekend instead of waiting until Monday or Tuesday as originally planned. Wow!! We knew he was magic, but this...It just makes us feel so good.

    Considering what he's been through in his short little life, that's pretty amazing. His stats remain good - yesterday they had a concern about his blood pressure being high, but it has apparently come down to an acceptable level and he's stable now. The doctor said that was a good problem to have, though - better high than low.

    The nurses had a concern about him being over stimulated, they want to keep him as quiet as they can so he can just rest, so we cannot really talk to him much and we cannot touch him until they're sure he's out of the water with his blood pressure and such. I'm sure that will only last a few days, so we're taking our visiting down to only a couple of times a day for a couple of hours at a time until we can talk to and touch him again. He really has no idea we're there anyway, he's on so many happy meds.     Another three weeks and we ought to be able to take him home. That's where the recovery truly begins for us. When we take him home there will be many rules for him and his care, and we have to monitor him very closely. we cannot take him out very often if at all, and not really at all in the cold. We cannot have any sick people visit him, and no children, either (little germ carriers). He will be on some kind of monitor as I understand it, so we'll know if he's desating and when to take him into the hospital. He'll have weekly visits to his cardiologist, to make sure he's okay. And all that will last about 6 months, until his second surgery. He'll be our little china doll. But after that, things will start to get more normal around him. It's all just because he'll still be so fragile during that time, and will need special care. we're just glad we'll be able to do that at home.

Sunday, November 05, 2000 10:45 AM

Quinn has already had his chest closed up and we're about to go to the hospital to see him. We're so proud of him, this wasn't scheduled to happen until Tuesday, but he's doing so well they went ahead and did it today. And Dr. Fiore called to let us know he's doing fine, so we're going to see him. Soon I'll have more photos to show - as soon as they're developed and I get some little extra time I'll scan them and show him in the hospital and in his little costume for Halloween and such.

Tuesday, November 07, 2000 6:16 PM

Not much to report today - he's stable and doing well. He got his little pacer wires taken out today, as well as his little RAP tube (right atrium pressure) - we thought those would be in until the very end! But they said he didn't need them anymore, and they're also taking out his drainage tubes today, and his little urinary catheter tomorrow.

    They wanted to extubate him today, but his lungs aren't quite clear enough, and his breathing on his own is still a little shallow, so they're going to continue to monitor him and it may be tomorrow or the next day he gets his little breathing tube taken out.

   So slowly but surely, all the tubes that are in him are being removed, so he will look more like a little baby and less like one of the humans in the Matrix. He will likely still have one tube when we take him home, for feeding, since he will still be too weak to suck just yet, but that will be the only one.

Friday, November 10, 2000 9:09 AM

I didn't send an update yesterday and I got emails of worry from people. Don't worry, no news is good news, remember? He's just slowly progressing towards getting off all these machines and medications.

   They're working on weaning him from the ventilator either today or tomorrow. He just started the medicine he'll likely be on for the rest of his life, Captapril (sp), for his heart. An anti-hypertensive, to help his heart have to do less work. He's still on the fentanyl, his little pain medication, and does he ever need it. They closed his chest Sunday but had to re-open the skin only, because he got a little infection and they have to clean and redress the wound three times a day. He HATES that, it hurts him like hell - it's heartbreaking to see his face when they do it, because no amount of pain medication can make that go away. They've started him on more antibiotics, though, that ought to help take care of it, and possibly today he'll be starting on breast milk again, so he'll get that colostrum from the first week (they have a Mother's Room and a large deep freeze for breast milk), which will help to fight off infections, as well.

   I just want him to heal so he doesn't have to be in pain anymore - the hardest part about going to the hospital every day and seeing him there is seeing his pain. A 19-day old baby shouldn't know what a look of terror is - he gets an actual look of terror on his face when he gets that wound cleaned, and after, and when he has to be suctioned every two hours. It's the saddest thing I've ever seen.

   On the upside, he is progressing, and it's all baby steps, but its progress, nonetheless. Another week or two and he comes home. Goddess, make that time fly by, and help my baby to have as little pain as possible.

Monday, November 13, 2000 9:43 AM

Today Quinn is 23 days old.

Yesterday EARLY in the morning, about 4 am, the tube that had been taken out of Quinn was reinserted. He's back on the vent, although on minimal settings and is expected to be off the vent for real by midweek, according to his doctor. They extubated him a little too quickly, and he wasn't able to fully breathe on his own without becoming tired, which makes his little heart work harder, which pumps more blood to the lungs and produces too much fluid in the lungs, which is exactly the problem we want to avoid. Plus he was still on a good dose of fentanyl for pain, which seems to hamper his breathing, as well. He's come down significantly on the fentanyl, though, so that will make a difference midweek.

   So that's what we have today, keep praying for/sending good healing energy toward Quinn getting off the vent okay, and no further complications after, so maybe we can have him home by Thanksgiving, which I've just noticed is the 23rd - it's meant to be.

Monday, November 13, 2000 9:04 PM

Today was such a wonderful day in the land of Quinn! First, they're telling us he will likely be re-extubated (they'll take the breathing tube out again) tomorrow, because they've basically solved the problem of balancing his medications with each other and it should all be fine. They already know he can breathe on his own, and they've come down far enough on his pain medication that it won't interfere with his breathing.

    When we got there today they were doing an echocardiogram of his little heart, and guess what! Remember that tricuspid valve that has been the bane of our existence since this all began? Well, last week it was still leaking pretty severely, and today - it was MILD!!! It is improving!!! We had to high five at that one.

    His little chest wound that was infected was looking so good that they even took him off of the antibiotics they had him on for it, and it'll likely be able to heal on its own - they won't have to surgically close it, which might cause more pain for him. Yay!

    He was comfortable today and slept well despite the fact that he's been on less pain medication than ever. It was all thanks to them having balanced out his heart meds correctly with each other - his blood pressure has been in the 90s (which is good), lower than it has been in a long time, and that has resulted in less and less fluid in his lungs, which has resulted in him being MUCH more comfortable. So instead of fentanyl, they've been managing any extra pain he has with Tylenol - NON-narcotic.

    As a result of him having less fluid in his lungs, he hasn't had to be suctioned as much, which in turn, keeps his blood pressure down and keeps him comfortable. And today when we got there, he was wide awake, and for the first time on many many days, his eyes has a look of wonderment and curiosity - no trace of horror or worry or fear as has been there so much recently. He looked like a normal baby studying the world around him. It was a joy to behold. And when he slept, he looked so peaceful and sweet.

    And to top it all off, as if our day wasn't perfect enough - when we came home today, some wonderful soul had mowed our lawn!!! I don't even know who, they just came anonymously and did it - so whoever you are, a thousand thank yous, we are SO grateful!!! And lemme tell ya, we know that lawn wasn't easy! I'm sure our neighbors are also thanking you!

    Goddess send us more days like today!!! 13 really IS a lucky number!

Wednesday, November 15, 2000 9:50 AM

Quinn was again extubated yesterday at 11 am, and is doing very well off the vent. His blood gasses have been great (which means he's saturating well). I got to hold him twice, and I even got to feed him WITH a BOTTLE instead of a tube, some pedialyte. He was sucking my finger for a long time, and doing a great job of it, and one of his many doctors finally gave us the okay on feeding him, with a bottle! So I got to be the first one to ever feed him - woo hoo! We didn’t get any calls in the middle of the night, so no news is good news, and we're on our way to go and see him (and maybe hold and feed him) again today. He still has to remain stable and be weaned from some meds and his arterial line before he goes to the regular hospital, but we're on our way.

Tuesday, November 21, 2000 2:02 PM

I'm sure you're all wondering why I haven't sent an update when things were going so well...well, our @#$%^&* DSL was down - they were changing routers and just lost us somewhere, we never got reconnected, so we were down for a few days - seemed like forever!!! we're back up now, and BOY, have I got news!!!

    Thursday, we came in and they told us Quinn was getting his arterial line out - that was the line from which they took blood, gave him his meds, etc, in his groin area. He'd been weaned off of all of his line meds and didn't need it anymore for anything, so no reason to keep it.

    So Friday morning when we came in, his art line was out, and all his pumps were turned off - the only things he was now hooked up to were his monitors, and all through external sensors, and the only tube in him was his feeding tube! He looked wonderful - all unencumbered of his lines. Later that morning they told us he was going to be transferred to the Floor (the regular hospital) later that afternoon! Wow, out of ICU already, and finally! And sure enough, later that evening, up we went to 3 south, his new floor.

    On 3 south parents can sleep at the bedside, they have these weird chairs that become cots at night, and nursing moms get free juice and milk. So we decided to take advantage of the fact that we could now sleep there with him. I got Saturday night and Josh got Sunday night.

    And Monday, guess what - D Day!! D for Discharge - Quinn got to come home!!!!! We were there until 9:30 at night, but we got to go home, because Quinn was taking his feeds well, and really, that was the only thing left he had to do to be released. So here we are, HOME!!! Talk about something to be thankful for!

    We aren't out of the water, just out of the hospital - we have to give him continuous feeds at night, to ensure he's getting enough calories, I guess until he's able to take enough at a time not to need it. And because he's on continuous feeds, he gets an apnea monitor (in case the tube goes into his lungs somehow or something an he manages to aspirate or something, the monitor would alarm (you thought you hated your alarm clock, you ought to hear this thing - it's LOUD and SHRILL)). He also has a monitor that we spot-check him on every morning and night to check his heart rate and his saturation. Plus he gets Captapril 3x a day, as well as his dressings changed and eye drops for a minor eye goo thing, Digoxin 2x a day, baby asprin 1x a day, Lasix in the morning. Feed 60ccs every 3 hours, and what he doesn't nipple he gets gavaged (tube-fed), so he gets his necessary nutrition. Home health comes 3x a week, we see his surgeon and cardiologist once a week, and are going to see his pediatrician in 2 weeks to get his normal baby stuff like vaccinations.

    We have to keep him away from anything that could be detrimental to him. He's very  susceptible to illness, so has to be sort of in a bubble for some months. He cannot be around children, nor can he be around anyone who is even remotely sick - not so much as a sneeze or a sniffle. there are viruses that for us are like the common cold, but for Quinn, could be fatal, and one never knows when one is a carrier. And flu season is upon us. He cannot go out except to his doctor, and even then they make special arrangements so we don't sit in the waiting room with other people. He cannot be around groups, and ABSOLUTELY no crowds. Only 1 or 2 people at a time around him, and only in excellent health. That includes us. If one of us is sick, we have to stay away from him.

    The second surgery will be anywhere from 4-6 months old, depending on his progress and needs. So for now, we just keep him healthy until the next surgery, and enjoy the fact that we get to have him at home. We are so happy to have him here. And so is he, we can tell. He's been sleeping ever since we got home at 9:30 last night! And they told us he'd have trouble sleeping, since he'd gotten used to the noises of the hospital! Ha!

    So that's the stuff on our Mighty Quinn - he keeps on going, fueled by love and prayers and good energy and chants and happy thoughts. Thank you all SO MUCH for all you've done, and continue to do, for him, and for his Mommy and Daddy. The food has been wonderful, the love has been amazing, the support out of this world - we will be spending the whole of Thanksgiving day counting our blessings and what we have to be thankful for. So many wonderful friends and family, and most of all, Our Mighty Quinn, our Max, King of the Wild Things, our Moon Man.

   I'll put up more photos when I get them developed! I'll keep the updates coming, although now they may be less frequent.

Blessed Be, All, and Happy Happy Holidays!!!

Home at Last

The Beginning

Pregnancy

Ultrasound Photos

Quinn's Birth

Explanations and Updates

Quinn's Heart

Quinn at Home

After the Glenn

After the G-tube

2 and Beyond

Pre-Fontan Journey

The Full Story

 

 

Photos

In the Hospital

Before the Norwood

Samhain

After the Norwood

Quinn Comes Home

Yule

3 Month Photos

Quinn Smiles

After the Glenn

The G-tube

7 Months Old

8 Months Old

9 Months Old

10 Months

11 Months

 

 

More Photos

Quinn's First Birthday

Samhain 2001

Winter Solstice 2001

Heart Walk 2002

22 Months Old

23 Month Photos

Being 2

New Hair

Quinn's Final Photos

Memorial Ceremony

HLHS Links/Mommy's Homepage