Eventful and unsensored new years eve

The on call doctor became available for reinsertion of Quinn's feeding tube today. The typical staff for this procedure includes an anesthesiologist who was not available. So the uncomfortable process of snaking a tube up his nose and into his intestine was to be done while Quinn was fully alert. The skeleton staff of one doctor and one nurse began the procedure in a radiology room that was six floors down from the cardiac unit. Steph and I were permitted in the room to witness. Quinn was pinned down by a nurse under a radiology machine that the doctor would use to visually guide the tube. Once the tube reached his nose, Quinn found himself in terrible regret for removing his previous one.

The nurse and doctors commented on his energy for endless screaming and fighting over the entire duration.

Steph found it very interesting, but I just found it unnerving. Especially when I saw urine and stool rocketing out of the sides of his diaper. When the doctor had finished with the insertion, and the nurse released her grip on Quinn, he became oddly quiet and spacey.

Not one to be easily excited or overly concerned, I continued my routine of randomly snapping pictures, unaware of what lay ahead.

Quinn's nurse from the cardiac unit entered the room and began moving him around and patting his back to loosen up any residual mucus. We noticed his color was a bit paler than normal and his breathing sounded gargled.


The next few moments have become something I will never forget. Steph commented sternly that Quinn was not breathing. Remaining perfectly calm, I looked on casually expecting the back patting to clear Quinn's airway and see him cough. The nurse sat him up and continued patting his back. Fluid and foam appeared at his mouth and I thought he'd cough any second.

I even took a quick video in hopes I could capture him overcoming a tough moment.

No cough, and his color began turning blueish grey. Steph repeated that he is not breathing, and I began quietly focusing on everything that was happening, including how scared I was getting.
Suddenly the nurse stated firmly that this is a cardiac code. I was unfamiliar with the term, but an organized scramble of running staff members and loudspeaker announcements ensued. Security guards cleared the way for emergency staff members to come running from the cardiac unit 6 floors up, and within minutes, the room was full of a dozen or so people who crowded around Quinn, shouting commands at one another. Minutes had gone by and no sound from Quinn. His color turned a lighter color grey.
At this point I was blanking out the fears of Quinn having a problem with his heart. In hindsight, I don't know how I'd have reacted if I let myself acknowledge the possibility that his heart repairs could be in jeopardy and he was having a heart attack. I pulled Steph back away from Quinn as I noticed her locked in a shocked stare. I told her in the calmest voice I could. "The best thing we can do is be out of the way and watch quietly. I don't want to be removed from the room." No sooner had I finished my sentence did a nurse approach us and escort us out of the room. By that time Quinn had turned a pale white. His eyes were wide open and his body had gone limp.
I kept blocking out fear. I knew there was order to the seemingly frantic chaos we were witnessing. I knew these were trained professionals taking charge and doing there job. I wanted zero distraction for any of them. And I knew that what I truly feared was the absolute worse. A minister was standing by in a waiting room to meet us. I kept listening to the room Quinn was in, and eventually heared a few gargled baby cries.
Three times a staff member from his emergency team visited us. Each visit, they asked how Steph and I were doing, but had no status of Quinn. I felt an ugliness swelling inside of me and began thinking of Steph. Composure became my top goal over the next several minutes. We sat, knowing that our son was in a state of emergency, and trying not to think of the last images we saw of him.
The patriots game was on the TV, and I stared obliviously at the screen.
The fourth visit was from a doctor. Who informed us that Quinn was breathing after they spent a while suctioning out his airway. His heart rate was elevated from the experience, but it was beating on it's own and Quinn was stable. It's all the relief I needed.
I have to wonder how dramatic this all sounds. I am laying it out exactly as it happened so Quinn will know not only what happened, but how we felt. He is fine now, and the X-rays came back negative for any internal damage or aspiration of stomach bile in his lungs. The staff also took blood samples for further evaluation and testing. It appears Quinn just choked on his own fluids for several minutes. But it was the first emergency Steph and I had experienced with him. No doctors to explain anything in advance like all his surgeries. Another new experience for Steph and I as new parents. Fear like never before.
Quinn, could you try to not do that again? That sucked, and your mom seconds that.

Happy New Year!!!

Quinn, what did you DO?!

It was the first night in weeks that I slept in a different room than Quinn. I came back this morning to find that he conducted a self extraction of his feeding tube. It seems he wanted to start the new years with no tubes in his face. He certainly picked a bad time to do this. Quinn is back on IV nutrients until the feeding tube can be reinserted. There is one available doctor on call to attempt the procedure, and he is currently unavailable. The nurses informed me he may not get milk again until after the new years, because this is not important enough to bring doctors in off of holiday break.
Well Quinn, what a fine mess.

Stuck in Boston

As it turns out, there are no open beds for Quinn at Women and Infants hospital in Providence. So we are stuck at the Children's hospital in Boston at least through the New years. Besides being conveniently closer to home, Providence will be the place where they will find out what is wrong with his digestive system. So getting him there sooner would have been ideal so the staff there could begin getting to know him. And it would be one step closer to allowing him to breast feed.
Quinn is on a third shift schedule. He has most of his energy between about 2am and 8am. It is between those hours that his temper and frustration are on full display. Typically I volunteer to contend with the screaming baby throughout the night, and Steph goes to the parent sleep area in a different section of the hospital so she can rest. When he's not happy (who could blame him), he really lets me have it with the crying and thrashing. If only patience grew on trees. I've had to learn some creative tricks to get him to calm down, but no combination of things works every time.

Quinn with dad.


And after a good night of exertion, Quinn with mom.


I know good rest for mom is part of what helps produce a healthy amount of breast milk. Steph's supply has been decreasing. I really want Quinn to be a breastfed baby. I have to thank her for sticking with a breast pump every three hours over so long a stretch. It seems such a thankless and painful thing to have to do so often, but she rarely ever complains.

Two days ago, Quinn had the last of the leads from his old pacemaker removed. The doctor just pulled them out like spaghetti noodles. His heart is wire free now.



He also keeps getting stronger and better looking. Still has the blue eyes.


I am eager to get him to Providence where they will begin researching the possibilities for correcting his intestinal problems. His luck and supportive prayers have been great thus far. But his fortunes will need to continue for him to be able to eat like a normal baby. If his duodenum doesn't recover from the repairs the doctors can perform, he could be eating through a tube until a better way of fixing the problem is discovered. That's a gentler way of saying his whole life, because Quinn has taught me optimism like never before.
I have wanted to reply to so many of the comments people have been leaving for Steph and I. New and old friends, family, and many of you whom I am unacquainted with. I wish I could meet all of you who have been offering any form of comfort for us. This kind of support for a family during hardship is a rare thing. It has made a difference for me and helped me approach things the way I need to, and I'm quite certain I speak for my wife on that.

What I can do is honor some requests for more videos and pictures. I leave you with a video of that singing nurse from the IV teams that hounded Quinn for the first month of his life. He was less than a week old and tough as nails. No one could get a line into his little veins.

Heart of a champ

Quinn's heart has improved to the point where he is no longer a pacemaker candidate. It rarely skips a beat anymore and stays at a healthy rate. "Look ma, no pacemaker!"

Having said that, I can now admit how hard I actually took the news back when the doctors said he would need one. He just seemed a bit young to have to worry about one of those for the rest of his life. And this is a lifetime of periodic battery changing surgery he will avoid. I'm ecstatic at the news. We have moved from the ICU into a different section of the hospital where Quinn can begin enjoying a little more of what life can offer. He has a swing, and a stroller for trips around the hospital.

As I pushed him around, he began getting smiles and compliments from many strangers, and many who would stop for a look. I was trying not to walk too tall behind his stroller, because I know how proud I am to be his dad. But what a completely new thing to be sporting my own kid around in public. I was pretty excited, enjoying every compliment he received and feeling more like a dad with each step. Pushing a stroller around was never so much fun.

The plan is that we will be transferring back to Providence this Friday for continued studying on his intestinal repair. The doctors will be trying to figure out why his duodenum is still too small to pass enough milk through to sustain a growing baby. Most likely it will require another procedural repair, but I'm not sure of many details at this point. Any swelling should have subsided by now.

The external tube penetrating his belly seems irritated and started bleeding today. This morning the nurses found blood clots inside the tube while flushing it. Quinn has developed the ability to scream pretty forceful lately, and doesn't hold anything back when he is angry. He has gained almost two pounds over the last three weeks and is gaining physical strength.

To those of you praying that Quinn wouldn't need a pacemaker, I feel I owe a debt of gratitude. I was not praying for him to not have a pacemaker. I didn't want to feel the disappointment if he needed one and it just seemed too insignificant given his other struggles. Steph and I want him to have the best start in life these doctors can provide and a pacemaker may easily have become part of that start. But like I said, I'm 100 percent thrilled at the news of this recovery.

Happy Holidays Everyone

Dan, Quinn, and I would like to wish everyone happy holidays and let everyone know how much their continued support means to us. We feel your love and support even from a distance. We love you all and thank you so much.

Dan and I got a wonderful Christmas gift (well a couple of wonderful Christmas gifts). Quinn came off of his IV nutrients today. Which is really exciting because it means 1) he's been tolerating his feeds very well (which I'll talk more about in a minute) and 2) he no longer has anything running through an IV constantly, which means we can disconnect (him except for his food) and take him out of our room. We are starting to be able to do things with Quinn that almost feel normal. It was wonderful, our first family walk!!!!!


(I can also hold him a lot more easily now that we are down to 5 lines running out of him :) )


OK, so back to the feeding issue. Many people have suggested that my diet may have something to do with Quinn's gas. I too asked this question. So, what we have done is switched him to formula for a couple of days 1) to see if it really is my milk he is reacting to and 2) if it is my milk, to give him a little break and to allow me to clear some foods from my system. He's been on formula for almost two days and Dan says that Quinn still cries as much and as forcefully as he did before. I'm still going to change my diet and see if that seems to make a difference when we start using my milk again in a day or two. We will let you know how this goes.

The next couple pictures are of all of Quinn's stuffed animals. It's amazing, Dan and I came here with nothing for Quinn and now look at his little audience of stuffed animals. Some of them were given to us by family, but most of them were given to us by perfect strangers. People do the most amazing things around the holidays. It's too bad this doesn't usually happen all year long, but it's wonderful that it happens at all.



(There's a little blue dog hiding under the blanket with Quinn as well)

Santa came to visit Quinn this morning, unfortunately I had just stepped out of our room and Dan was asleep so he took a Polaroid with Quinn and left it for us. Hopefully I can scan it someday and put it on the site. Several families who have had children with heart problems have given out gifts here and other families who have already left drop off food in lounge. It's such a tribute to human kindness still existing.




Lastly, I think we are finally getting the hang of soothing Quinn. This is one of the ways daddy does it. I just thought you would all enjoy this. OK, take care everyone.

Day by day

Quinn is still off of the pace maker and his heart rate changes every few minutes, no matter what he is doing. He still has times when it skips every other beat, and times when it beats normal. He is still taking moms milk through the tube in his nose, but has had to cut back at times do to gas build up in his gut. I am guessing that the gas is what bothers him the most, since he cries the hardest when his belly becomes distended.


There have been times when I would make jokes about my friends and family who would gleefully celebrate every little thing their child does. Well, now I cheer my son on whenever he passes gas. If he doesn't, he won't get more of mom's milk. I asked the doctors if there were any significant risks of staying on IV nutrients for long periods. They mentioned potential liver problems and development of slow motility in the digestive system. (I'm considering sending a sign to my brothers goquinngo website that says "fart Quinn fart!")


The staff here at the hospital have become increasingly watchful and perceptive of Steph and I. They get somewhat concerned that we don't often leave the hospital. We have been visited by a minister and a social worker who check on our moral as well as do all the nurses and doctors. Our situation can be tough, but it certainly isn't bleak.
People talk about my son and the things we've endured as a family putting things into perspective. Being in an ICU has helped me relate to that. I've encountered things I've never had much exposure to. I see other new parents coming in with children having a wide range of conditions. I've met parents of infants with cystic fibrosis, and have seen babies with physical deformities and other afflictions that force me to marvel at how fortunate good health is. I've acquired a better idea of how many things need to go right in order for a baby to be born healthy. I'm thankful for the success' Quinn has had since he was born and I get excited about the life he has ahead of him. Though Steph and I have had to find ways to cope with frustration, we know enough to be grateful.
As I expected from well before he was born, patience has been one of our real challenges. But we have a son who has overcome much, and is surrounded by doctors with tremendous capability. He still has a bit of a journey toward recovery. But if nothing else... at least he's got his looks.

Two steps forward, one step back

Yesterday Quinn had a tube snaked through his stomach, past the swollen duodenum, and into his intestine so the nurses can start trying to give him milk. He was given morphine and a breathing tube for this procedure. He now has a tube going up his nose and directly into his intestine for feeding purposes. So good news is he gets to eat, bad news is he only gets milk up the nose. Sorry little buddy. I thought about complaining about the tape job on his face, but I know that is the least of Quinns problems.

They also took the opportunity under sedation to put another line into his arm.

I've decided to show a video that I had previously decided against. It's not any fun to watch, but it is a glimpse of what he is going through. I took this one back before his heart surgery and it shows him trying to cry with a breathing tube in. He was less than two weeks old. If only he was just acting.

I want friends and family to know that we will not be coming home for the holidays, in case anyone was praying for that. Last night at about 2am, Quinns heart rate dropped pretty significantly and started skipping beats more frequently. It went from about 140-160 beats per minute, to between 70 and 80 and has stayed there. Doctors are concerned of course, but the plan is to give him time in this controlled environment, and hope for improvement. Remaining indifferent about having another operation is a challenge. I flat out don't want him to have one. But if he does, I know it will be because that's what is best.

The doctors agree that exhausting all other options before surgery is the way to go, and they talk to us frequently about his situation. They are not setting a time limit on his recovery, so he will be hospitalized for quite a while to come. There will always be another holiday season, and I'm happy he won't remember his first one. Baby's first Christmas is usually over rated anyway and it's more for the parents.

I will say that this setback takes nothing away from how far he has come. He's already been through worse, as this concern is not life threatening. Doctors kept the leads in place from a pacemaker going into his heart that will keep it pumping should it stop. He's still a handsome and tenacious little man. Like so many of you, I really enjoy rooting for him. Thank you to everyone who is behind us. There are many blessings for us to count and Steph and I remain conscious of that.

Reprieve

Monday Quinn's heart surgeon came to check his heart a final time to see if it had any chance of self recovering. And for that day at least, Quinn declined to have another operation. To every one's surprise, his heart was self maintaining and he has been off of a pacemaker for two days now. Over that time his heart rhythm has improved to a normal rate.

Maybe Quinn could sense the overly familiar sensation of doctors looking down on him wanting to cut him open again, and forced his own heart to beat. I don't know.

As of today, scheduled surgery for a pacemaker is off the table, and the doctors are going to continue monitoring his heart. Every so often his heart will skip a beat, and when he gets angry his heart rate jumps around erratically. But so far he has taken the path of recovery. I'm doing my best not to get too excited. His heart still needs to improve to have a pacemaker completely out of the equation. I'm still waiting and hoping for the time when he can begin drinking all his mothers milk she's been saving for him.

Quinn now has the strength to thrash about pretty good when he cries. I find it hard to watch over long periods, because I can tell by his type of cries and body language that he is still in much pain. But it's the only exercise and release he gets. The upside is he wears himself out and sleeps pretty good.

I thought I'd take a video of him sleeping peacefully.

I can't deny how great it was hearing the news that Quinn has the ability to have a heartbeat of his own. One that is becoming more normal by the day. I'm trying to stay off the edge of my seat here, but Quinn loves to surprise. Steph remained hopeful all along that his heart would recover. But when his doctors kept telling me the probable reality was that his heart was too damaged to beat on it's own, I learned to accept it. Well son, you've got me back in a holding pattern. So good luck. What ever happens, better times are still on the way.

Nice weekend

Other than a few hiccups, Quinn spent most of the weekend very calm as compared to last week. Maybe it had something to do with all the pretty ladies holding him and giving him undivided attention all day long.

Sounds like a great weekend for any guy. Quinn was that a good time or what?

He smiles during his sleep, and what a difference it makes from seeing a furrowed brow over the past few weeks. My patience with keeping the camera at the ready is paying off. The doctors have yet to decide when to put a pacemaker in, or what size device they will use. They are still hoping and waiting for the swelling in his repaired intestinal area to go down. Last week we were told the surgical team was aiming for a Monday operation, but they haven't committed to it yet. Meanwhile Quinn is still very hungry and cries like any other hungry baby. He still only gets IV nutrients and has to contend with having a constant empty belly. That's why I was surprised to see him so well mannered over the weekend.

I expect that the next few days will be pretty quiet since all we are doing is waiting to see how Quinn progresses. I don't anticipate any big news other than his healing status. Steph and I finally got away this weekend to go up the street a few blocks and catch a movie. Do not see Apocalypto if you are a new parent. The film is not advertised for the content that is most disturbing. It showed graphic violence towards infants. I can't believe our luck in picking a movie. It kind of put the damper on my date with Steph. Oh well. She and I have kind of gotten good at getting over things quickly. We came back to see our kid sleeping peacefully with his grandparents watching him. I'm sure he had a better time than we did.

Handsome guy

I often wonder to myself, how did this young man get so handsome.

Doctors set Quinn's pace maker to a constant rate to see how his body handles it. When he's sleeping or when he's crying, his heart rate won't change. This is in preparation for the surgery on Monday when he'll have the permanent pace maker installed. The permanent one will have to go into his chest behind his rib cage. Not the preferred spot for these gadgets, but the doctors don't want to further impede the healing of his intestine by cramming the pacemaker into his abdomen. I know I was hopeful before that he wouldn't need one, but he's so good looking, it's possible he'll put them in style.

I can't wait for the first time he feels a young girl has broken his heart. I can tell him, "Your hearts not broken son, we just charged your battery." On the other hand, no good looking gal will ever get his heart to skip a beat either. So maybe he'll be the heart breaker.

All clowning aside, I've come to grips with the idea that a pace maker will not affect his ability to enjoy life. Enjoying the simple things life offers is a skill, and an important one at that. Kids may make fun of him in school, but who doesn't get made fun of growing up. For the most part, he'll be his own judge of what he can and can't do. Just like everyone else.
So he is still and always will be The Mighty Quinn. Part man, part machine. All inspiration. To his proud dad anyway.

Video time. He's a looker.