Not so fast

Heart surgery has been postponed. Quinn vomited just in the nick of time. He waited until the the team of doctors and nurses had him in the operating room and under anesthesia. I say just in the nick of time because if he had vomited during the surgery, it would have been a potential catastrophe. Something is not right with his stomach. Since he has started eating, he has been in pain. He now has a certain tolerance to morphine so it doesn't offer as much relief anymore. And even though he was pooping his diaper, his stomach has become distended. He is back from the O.R. and the doctors will need to figure out what is happening in his stomach, and monitor his lungs to see if any stomach bile made it's way in there.
Fortunately, Quinn is in a relatively healthy state and can afford to hold off on heart surgery. Grandparents made the trip up to Boston to be with us in the family waiting room, only to be turned back after an hour into the operation. The doctors will be deliberating on the next move over the next couple of days while Quinn is monitored. For now, the doctors will leave in the multiple lines and respirator inserted for the operation. So he doesn't look as he did this morning.

Steph will not be breast feeding him again for a while. She must go back to her painfully familiar pump. Quinn will be back on IV nutrients until they can figure out what the deal is with his stomach, and then the operation will happen which further prevents breast feeding. This morning, she and I spent some final moments with him before he went off to the O.R.

I'd have preferred to have gotten this over with, but with what happened, we'll have to wait and see. We're both thankful nothing big went wrong. Steph's frustration at what he's having to endure is mounting, but she keeps herself together very admirably and intelligently. The support from friends and family, and good people we've never met have been mounting also. So I'll complain about nothing, and keep hoping for the better days ahead. I still think my son is in the best situation, given his circumstance.

Visitors

Well said Grandpa Dan. Making me excited to become a grandpa Dan.

Quinn started eating yesterday. Breast feeding. Doctors and nurses weren't sure if he'd be able to, but it took him only a few moments to figure out what to do. Then he was eating through his mouth like it was no big deal. Quick lesson for dad, don't make jokes when mom's trying to feed him. Steph shakes when she laughs and the baby's head gets a good jarring. Mom got stern with me after my milk shake comment. Quinn has his fill and burps like a pro. These are some of the faces I have to laugh at. Little old man.

The nurse took Steph and I to see another older baby who had undergone heart surgery to explain some of the equipment and meds that he will be on. The doctors will make a decision during the operation on whether to leave his chest open for a few days during recovery. Having his rib cage spread open will prevent pressure on his heart when he starts swelling from the alterations made. It's unsettling to think about, but Grandpa Dan made an excellent point about him being in the best place for this time in his life. After tomorrow, he'll be back to eating through tubes and IV's. We just signed the consent forms to have him operated on. I know prayers are answered in a million different ways but I wish this kid a smooth operation in the worst way. Since he's been born, so much seems out of our hands as parents, and for me, thinking about that gets sickening pretty quick, so I just pray like everyone else. Good luck on this one little man. I wish he knew how many people are behind him.

There's a TV in the room we're in, so Quinn and I are watching our first Pats football game together. Again, not how I'd imagined, but I'll take it. Mom is sleeping after a long night. He cried pretty heavily from about midnight to 5am. His blood oxygen levels go down when he strains, so the nurses gave him a few doses of morphine. I'll do my best to keep everyone up on how it goes tomorrow.

And the winner is......

I know it's been a while and some of you may not even be aware of what I'm talking about, but the results from the stats game we did back in October are in. And the winner is my ............ my mother!!! Joe and Kristin came in second and Serenity came in third. If you would like to see where you placed you can check at http://www.expectnet.com/game.php, remember to type in guessthestats under invited guest.

Figured it out

The photo upload problem. Just needed a little computer savvy and expertise. So this was his eye yesterday, it probably looks better than how I made it sound. I accidentally let the flash rip on the poor guy for one of the pics. Nice going pops.


Joe..."This is great shot Mav I should be a photographer."

This kid's got me proud of him for crying and pooping his diaper. Crap yourself champ! You can do it! It just means he's working normal. I never thought I'd meet a baby who couldn't poop or cry. I always thought those were some of the main purposes in an infants life.



























This is what mom does when dad is in the room.













Quinn has more visitors today. Auntie and grampa. It's good to know how many people are standing by to spoil this little man when he gets out of here. I plan on having him suffer through all of this and be spoiled before he remembers anything.












As for those of you asking for a hospital address. I need to mention that there are not a lot of outside items permitted into the nursery. Flowers, balloons, baked goods. We would have to find another place to store them if they were sent here. So in the way of a helpful suggestion, those of you hoping to send gifts or whatnot, save the trip to the store and just put the money in an envelope. I won't be offended... In all seriousness, I know there are people wanting to send gifts, but we just wouldn't have a place to put them at this point. The address for the hospital:


Quinn Marshall
CICU
Children's Hospital Boston
300 Longwood Ave.
Boston MA, 02115


His heart surgery is still on for Monday. I just got word from the doctor that he will have the tube going up his nose to his stomach removed at some point today. That's great. He'll have a naked face.

Progress

For some reason, this site is not letting me post any pictures right now, which is too bad cause I just took some. Quinn got his leak check done today on his digestive system. Systems a go. The doctors will meet up in the morning, and he should be able to start eating. Drinking I should say. He'll start getting moms milk through the tube going into his belly. But what an upgrade from IV nutrients I would imagine. Steph has been pumping away for over a week in hopes of things working out. Now she will finally have purpose. Both his grandmothers visited him today all the way from Ledyard CT. Boston childrens hospital is not a convenient place to get to.

Left work today and got to the hospital late in the evening. First thing I noticed was that his face was different. I asked Steph if he had been in a fight with the other kids. His right eye was noticably swolen like someone punched him one. I'll show the pics whenever I can add them. He still looks good, and once he opened his eyes and started looking around, it seems the swelling went down. His crying is getting stronger now. He's crying with some dignity. It is nice hearing him, but I don't think he's a fussy kid. His first week of life has been a house of pain. I tell him he's got better days ahead and to stick with it.

I just let a group of guys from work in on this blog. While I've been receiving compliments and thanks for what I've been writing, these guys are going to read it and think I've been popping estrogin pills. I'm actually not fellas. Just tellin it like it is. The people at work have been great about all this. The project I'm on is right in the midst of kicking into high gear and people are covering for me and offering me any help I might need. They've been telling me I look in good spirits. Hey I just became a dad. At any rate, I can at least tell Quinn everyone at the office is joining the ranks of good people pulling for him.

One enchanted evening - I added two photos

Dan is so astute. I do try to get him to post as much as possible. Believe it or not I think I enjoy his posts as much as everyone else does. He just puts so much of himself into them I love reading them. But, I guess it's time for the mama to talk. I feel like I've been able to spend so much more time with Quinn lately. While we were in Providence they pretty much kept him sedated because of his surgeries and he had a lot of tubes and wires in him, so all I could really do was look at him and stroke his head. Also, they had rounds and change of shift at which time (understandably) we had to leave the ward. But this happened every couple of hours for at least an hour. Here Quinn has been much more awake, we don't ever have to leave the room, and as you've seen he has much less equipment sticking out of him so, as Dan mentioned in his post, I was finally able to hold my son!!!!!!


(I have more pictures, the camera died before I could get them on the computer, I will put them on later)

I had such a wonderful even with my son yesterday. It was pure bliss. I sat there holding him stuck in one of life's most perfect moments for hours fighting back tears (unsuccessfully might I add) thinking that this is the way life should be for all babies. Babies should be held by people who love them as much as possible, especially when they are in pain.

I feel like I've been waiting so long to hold him. In the same instant though, I look down at him and can't believe he's here, a little mix of Dan and I. It floors me what an enormous thing this is and what a little miracle he is.

It's funny, one of the nurses today moved a chair for me today even though I told her I could do it. She looked at me and said, you just had a baby remember, you should still take it easy. To which I replied, hmm, I guess I did just have a baby, but I swear that has to have been like a month ago. He was actually a pretty good delivery (I think, I have no comparison). No, contractions are not fun, but all in all it wasn't bad. My sister convinced me to call my doctor at 4:30p on Tuesday the 21st. I had been having contractions since 1 am the morning before, in fact Dan and I had gone into the hospital on Monday but were sent home due to lack of progress. So when I was still contracting on Tuesday and hadn't had much sleep since Sunday night I just wanted a little break to be able to sleep. I knew though if I called the doctor that they would tell me to go to the hospital. Since I didn't feel like anything had changed since Monday I didn't want to go to the hospital because I was sure that they would just send me home again. It turned out to be a good thing Sarah told me to call the Doctor because I had actually progressed to the point where they admitted me to the hospital. I called Dan to tell him to come home from work and Sarah stayed with me at the hospital until he got there. I was doing really well drug free until the doctor decided I wasn't progressing well enough and that they should give me Pitocin. After 1hr 20min of pitocin induced contraction on top of contraction, drugs couldn't come soon enough. Dan would tell you I was hitting him at this point, although I don't remember that, if he says I did I'm sure I did. I had really wanted a drug free labor, but anyone who has had pitocin the way I did will tell you how difficult that would be. Once the doctor put in the block (pain killer) life was great. I could feel contractions but only just enough to know when I was having one. When it came time to push, I didn't feel any pain at all, what a beautiful thing. Quinn came an hour after I started pushing without any tearing or the necessity of an episiotomy (yeah, thank you soo much Dan). So this is the point in the story where we find out there are complications and you all know what happened from there. I just didn't want Quinn's birth to be swept away in all that has happened since. It was a happy and eagerly anticipated moment. One that I'm glad Dan and I had without knowing what lay ahead. I think had we known there was going to be complications ahead of time, things would have been very different.

Looking good

I asked Steph to have a crack at updating this. And she asked me with what. That's gotta be her way of still wanting me to update everyone. From a productivity standpoint, Quinn has successfully had two needles inserted into his veins, one in each arm. That is great news for the little guy. Now he can relax for a bit and have a break from the IV team visits.


















Mom got to hold him today!!! But I wasn't around to take a picture. We also saw him smile twice. I've been in and out trying to get things squared at work. I'm lucky to have landed with a company that is allowing me the leeway to be with my family so much and still pay me in my absence. I've already depleted my three weeks of paid vacation for the year.













X ray team visiting.













For those of you checking this site a million times a day, I'm sorry it doesn't get updated as often as that. Right now things are relaxed. We met his primary cardiologist today, Dr. Marshall. Oddly, Quinn has now had a doctor named Daniel, a Dr. Lee, and now a Dr. Marshall. The doctors are still deciding when to operate on his heart. Normally doctors like to give the kid a few weeks or months to grow. However, some of the things his heart has shown are indicative of needing it repaired sooner rather than waiting.

I appreciate the things people are saying to us, and the phone messages with constant support. If I need anything, I'll have no shortage of people to turn to. Very humbling. Steph and I check this often and enjoy all the comments. Thank you. My son will be fine.

Noteworthy day

Early in the morning, mom and baby are sleeping, and very well deserved. I spoke with Steph earlier today about how so many people we don't even know are praying for our son and looking at these pictures. Some of these pictures aren't happy ones, and I asked Steph how she feels about so many people seeing them. She was hesitant, but decided they're all part of his story. But she mentioned that using discretion on my part wouldn't hurt. We are both very surprised and grateful for the amount of people supporting us.

Having said that, moving chronologically, Quinn's morning had the makings of another arduous and pain stricken day. Today he was visited by some pediatric flesh welders.













Not really. What the nurses are doing is using a light to find some veins for another IV. His previous ones had to come out because his veins were so tiny that not all of his meds were entering his blood. That means he was not receiving the dose of pain med that the doctors had thought for his previous arterial line attempts. Once again, tough break Quinn. More unsuccessful attempts at inserting a line. They placed a blue sheet over him to keep the environment sterile. Now not only could he not cry out, he couldn't even show pain.













Dad got down to look at his face to be right there with him. This is where I'll use discretion with the pictures. But watching his face isn't something I've figured out how to prepare for. The nurse is saying it's actually harder on me, and I'm thinking to myself, come look at his face lady. The nurse started singing softly to Quinn, which was very kind, but he wasn't calming and his heart rate wouldn't come down. So they stopped.

Here's my little wore out champ resting up for more of the same to come.

If they don't get the arterial line into his arm, they will have to use one going into his groin which raises the risk of infection. Steph wishes they would stop trying, but if it weren't important, they wouldn't try at all. Later in the day, his breathing tube was removed and he is breathing all on his own.

His face is sill pretty swollen, which explains why he looks like a little old oriental man. But now Quinn can make noise and I'm so glad for him. He cries, but it doesn't really qualify as a cry since he sounds like a squeaky gremlin. The nurses gave me this little rubber nipple that fits over my finger. It keeps him occupied and kind of removes that ticked off look from his face.














I'm proud of him for enduring everything. And sorry that there's more to come. He's hanging in there good, and has a ton of supporters beyond who mom and dad can name. Thanks again from my family to all.

To the pain

The hospital has accommodations for Steph and I. There is a sleep area for parents to rest. It's a few beds in an open bay area, kind of like an old military barracks. 4am and Steph and Quinn are sleeping. Comfortably I hope. I finished another coffee and found that the room Quinn is in has wireless internet. So I've got the mid watch with my new little buddy, and I've got time to update this blog which has sort of morphed into a journal for me.

I'm glad Quinn won't remember these days. Mom hates seeing him in pain without the option to cry. His face is swollen and puffy from fluid build up due to his recent operations.

Upon arriving at Boston children's hospital, it was more needles and incisions waiting for him. Steph did not want to watch him go through any more of his torment, and wouldn't look at him. I told her it was OK, and that I'd watch him. The first thing the doctors wanted to do was insert a line into one of the arteries in his wrist. In providence, this was attempted a few times unsuccessfully. It looks very tricky to try and get a needle point into a tiny newborns artery. Quinn had a scowl. The doctor would spend a few minutes putting the needle into his wrist and move it around to get it into the artery. Each time he retracted and reinserted the needle, Quinn's face would contort and turn red, his hands and feet would clench, but he couldn't make a sound.

After spending about 15-20 minutes on one wrist, the doctor moved to his other wrist for another 15 minutes of the same routine with no success. Watching this was a little more heart wrenching than I imagined. After only a few attempts with the needle, and watching Quinn just have to swallow the pain, my knees got weak and I felt about ready to wet my pants. Talk about being no help to anyone. Steph asked why I watched, and I told her. He's my son, I can't ignore his pain, and I don't want to miss any moment of him impressing me. The doctors never could get the needle into the intended spot, so all the pain and squirming became just another part of his ordeal. Tough break Quinn. The doctors then asked me to step out of the room. They do this anytime they are going to make incisions. Another tube into his groin area, and a replacement of the existing tubes. They do not plan on operating on his heart tomorrow. A separate surgeon took a look at his esophagus and intestinal repairs. He told us the repairs look good and he's still coming along fine. They will run a leak check in a few days to test how well they've healed. They will put a dye in his digestive system and monitoring the flow.

People have been complementing Steph and I on how strong we are being and how well we are handling the situation. I would say one reason is that no one has seen me come apart yet, but that's no accident. That's what bathroom stalls and dark parking lots are for. If you've ever been the parent of a new infant who hasn't gone through an experience like Quinn's, I just can't recommend it. If you gotta take em to Boston, make it a trip to the aquarium or something. Besides, I know things could be a lot worse. I am much more impressed with Steph, who still has yet to hold him. Between her and Quinn showing me so much resiliency, I have two huge blessings right there. Then all the friends and family. Thank you guys. I know I would like the updates if this were happening to someone I cared for, that's why I'm doing this. I will continue to keep you guys up as often as I can. One more day closer to getting Quinn past all this.

Hey Joe. What movie. ~ "He won't cry...So I cry for him." I've been wanting to use that line on Steph but she's not cooperating.

Real quick for you all

I went to work today while Steph stayed at the hospital with Quinn. About noon time I got a call from Steph letting me know that he was having some low oxygen level spells and increased heart rate every time they reduced his morphine. I don't think he's quite ready to feel the pain of the surgeries, especially with his tetralogy of fallot condition (his heart). The decision was made by the doctors to move him to Boston where they have a unit that specialises in heart conditions.
So I let the guys at work know that I had to leave immediately. Gotta go help my son with his morphine addiction, and came to collect my wife for a trip up to Boston. Work has been good about letting my son dictate my schedule. We have a bag of dirty laundry and the clothes on our backs for tonight so this should be interesting. So many friends and family have been offering all manner of assistance which is great. Steph is taking a few minutes to finish getting ready and then we'll be off. Updating this is easier than trying to call everyone. So I logged onto a computer in the lobby to update you all while I wait for Steph. And then we'll be off. Thank you all for your support.

Interesting enough

I'm sitting with Quinn earlier today, and just like nothing, he calmly opened his eyes and started looking around. I know parents tend to get excited about the smallest thing their child does, but I haven't seen his eyes since the first moments after he was born. He's still sedated and has spent the last few days with his eyes shut. So I quick drew my camera. His eyes are blue so far. They put another IV into a vein on his forehead, the poor guy.

Well, put a fork in me. So far dads the big cry baby. When Quinn wants to cry, he'll make the angry faces but no sound will come out because of the tube down his throat. So he eventually gives up.

Man that's gotta suck! I use to always wonder how I'd handle a baby crying. Now it's all I want to hear. I'm not going to hold back when it comes to putting pictures up because as of yesterday, even grandparents are no longer allowed into the IC unit until further notice. This is due to a threat of a recent respiratory viral infection brought into the nursery. So this blog is the only way that friends and family can see him. I have no problem being obligatory.

Hey dad, does this face look familiar to you?

Steph and I got a visit from a nice group of friends and family today, and as was evident, we are all in good spirits. Quinn continues to show his doctors and examiners that he's coming along fine. And while I'm so thankful for what these doctors can do for him, I can't wait for this part of his life to be over.