I’m going to start this story with something that happened before my last post. I was not sure of the implications or ready to deal with any complications that it may have provided. So I left it out of my last update.

What is left of the circus was packing up and getting ready to head to our hotels for the night. I was standing out in the hospital hallway with a few others when the respiratory therapist walked into Chaseton’s room. Seconds later he ran out calling for a doctor. I ran into the room and noticed Chaseton’s oxygen saturation was at 50%. Reacting without much thought I grabbed him and lifted him in to a sitting position and started patting him on the chest like I had seen the therapist do before. After a second or so of this he sucked in a large lung full of air and his sats started to climb. As this was happening the medical team rushed into the room. His sats quickly climbed into the 90’s and stayed there while he was awake. He had several doctors respond to the call. After checking him over they all agreed to watch his progress closely. They all left and Chase started to settle down. He had been up all day and really needed to get some sleep. As we watched him he started to drift off to sleep. His sats immediately started to drop. When they reached the mid 80’s I woke him up and they climbed back up to 100%. This happened two times before we called the nurse and asked for him to go back on O2. Chase spent the night on a low dose of 02 and had no further problems. Both Sammy and Brandon were with him all night getting very little sleep themselves.

Thursday morning we were able to get to the hospital rather early, knowing that Sammy and Brandon would need some rest. Chase was scheduled to have his last two drains removed at 11 am. Sammy and Brandon decided to stick around until that was done.

Chase came back from that procedure with a completely different view on life in the hospital. We actually got our first smile from him within just a few seconds of his return. Yes, it may have been the drugs. He continued to grace us with that wonderful smile many times during the day.

Sammy and Brandon headed back to the Ronald McDonald house to get some rest. Cyanne (Chaseton’s aunt) and I were the appointed baby sitters. We thought he would get some sleep but soon after he returned from his drain removal the echo tech arrived to give him the once over. We already had a tired, grumpy baby when she put that cold gel on his chest; oh look out. Now we had a tired, grumpy, pissed off baby. Did he ever let us know it. Yes we had our hands full, but it was all in love.

Just after the echo tech left they showed up in a red wagon to take him down to x-ray. I have some video of the trip. He enjoyed the ride. Sue and I helped them perform a chest x-ray and then had a fun walk back to his room.

Chase was able to catch a short nap before the respiratory therapist came in to bother him again. After that Sammy and Brandon came back and we all took him for a walk in the hospital garden.

What’s left of the circus ordered in pizza and we all ate in the hospital cafeteria. Chase included. It was a bit of a sad night because three of the circus members need to leave tomorrow. The crew will now be down to two, plus Sammy and Brandon.

I don’t know how to properly express my thanks to the entire circus. We started out at 14 and every one of you was a valuable member of our crew. You all brought a different perspective to our group and every one of you were a great help. Thank you for being with  us during this very difficult time.

The jury is out on whether Chase will head home on Friday or Saturday. We will find out more in the morning.

Once again my editor is sleeping so I am posting this without her help. I’m sure there will be plenty of mistakes. I hope they will be corrected in the morning.

Chaseton’s Grandpa

No, Chase has not suddenly learned to walk. The pace of his recovery has slowed down to the pace of baby steps. We are not moving backward but our forward progress is slower than what I hoped for. Having no basis for my expectations it is quite possible that his recovery is exactly on schedule.

The last 2 days have given us an overly tired, very grumpy baby. Not that I would expect any thing else after what this child has been through. We have spent long hours in the hospital doing our best to cheer him up.

The doctor is thinking that they may be able to remove his last 2 drain tubes and that should help increase his comfort level quite a bit. Sammy was able to hold him a few times today. It had a great calming effect for both mother and child.

Only time will tell what tomorrow brings. We hope and pray for the best.

Chaseton’s Grandpa

First let me apologize for not updating this blog sooner. I just did not have the drive to write.

When we last left you, Sammy and Brandon had a short chance to visit with Chase about two hours after his surgery was completed. Staff shift-change was about to commence but they let them sneak in for a quick peek, kiss and update. Shift change takes a long time. Each patient is discussed with the incoming staff in detail. So we had a couple of hours to kill and talked Sammy and Brandon in to joining us for dinner.

We picked a small Mexican place not too far from the hospital. Soon after the first round of margaritas were served it was obvious that the circus was ready to blow off a bit of steam. Sammy was wilting quickly and she and Brandon orderd their food to go. When it arrived they headed back to the hospital. That was probably a good thing. I’m not sure they wanted to witness the rest of the night. There are rumors of a video but I’m sure it will never appear.

The following morning (Saturday) we all met up at the hospital. Some were a bit worse for wear. 😉 It was a long day; each member of the circus was able to visit Chase at one point or another. He made steady progress all day. Kidneys started to function, oxygen was reduced, most of the meds were cut in half. It was really strange to see our baby with pink lips for the first time. His O2 saturation was running at 100% vs the +/-80% we were used to.

Saturday night the whole circus was able to sit down and enjoy a very nice meal together. It would be the last for this group on this trip. Some of the key members had to head home in the morning. They will be missed in the days ahead.

Sunday was Father’s Day, Brandon’s first. I’m sure that he never envisioned spending it like he did, but what better place could a father be than supporting his son in a struggle like this one. I’m sure Brandon would agree. I know I would not have traded my place by my daughter’s side for anything in the world. My parents and Chaseton’s grandma’s parents were with us also. I know they feel the same. It will be a day to remember, always.

Sunday morning at the hospital we were greeted by the surprise that his breathing tube had been removed. Over the course of the day Chase made great progress. Sammy and Brandon had a chance to feed him his first meal in three days. Yes, he was a bit hungry :).

We all had a chance to visit and everyone left with a sense of well-being.

Monday morning was filled with more good news. Sammy and Brandon were able to sit in on morning rounds and talk to the doctors. Chase had continued to improve and the staff was ready to move him out from the CICU to the step down unit. It has a bit less care than the CICU, but more than a normal hospital floor. During the course of the day things slowed down a bit. Chase had some fluids building up in his left chest cavity that were compressing his lungs a bit. They had to install a drain to remove the fluids. His lungs were also congested and were not allowing as much O2 to pass as we would have hoped. It was decided, much to my agreement (not that my opinon had any revelance to the decision), that Chase should spend one more day in the CICU just to make sure everything was ok.

What was left of the circus went out to dinner and called it an early night. Except for my self, who finally found his moose (inside joke) and got down to writing again.

I can’t wait to see what tomorrow brings. Every day is an adventure.

Chaseton’s Grandpa.

Chaseton, Sammy, Brandon and Grandma spent the day in the hospital doing pre op. Chase was his happy self all day, taking all the poking and prodding in stride.

The rest of the circus was busy descending on Atlanta. We were all able to get together for a nice visit and dinner. Remarkably a very strong thunderstorm broke over the area during our meal. The wind blew open the door to the restaurant sending menus and napkins flying all over the place.

Maybe the storm broke early and we will have smooth sailing in the morning. One can hope and pray.

This picture was taken just before the storm broke.

Chase needs to be at the hospital very early in the morning. The surgeons are planning to perform the Nikaidoh procedure on him and expect the operation to take about 6 hours. It is going to be a long stressful day for the circus. I have confidence that we will handle it with aplomb.

The second chapter in the life of Chaseton is quickly coming to a close. This chapter started on Tuesday October 2^nd. Chaseton was 9 days old when he arrived at his home for the first time. It will end on Friday June 14^th as he undergoes surgery to repair his heart. Then the third chapter will begin.

The last 36 weeks have been great! Chaseton has thrived during this time. He is a happy, easy-going baby who NEVER cries. We have been blessed with several visits by Chase and his parents. Also we have taken every opportunity that has presented itself to travel up to Georgia and visit. Grandma more often than the rest of us as is to be expected. 😉 Everyone who has had the opportunity to meet Chase has been amazed at how happy and healthy he is.

During the course of this chapter there has been what I think of as dark storm clouds on the horizon. We have all been aware of them but were able to put it in the back of our minds and enjoy the times we have had. Over the past few weeks the clouds have been growing, getting closer and more ominous.  The surgery is scheduled for later this week and it is now impossible to ignore the coming storm. We can only hope that it will be mild and over quickly with many sunny days in Chaseton’s future.

The Gathering will begin on Monday when Grandma travels up to Georgia to help Sammy and Brandon with the overwhelming task of getting everything ready for the trip to Atlanta. They will make that trip on Wednesday and Chaseton’s pre op is scheduled for early Thursday morning. It is expected to take most of the day. Surgery is scheduled for Friday morning. The rest of the circus (and it has grown) will arrive by car, plane and motorcycle on Thursday. It will include Chaseton’s 4 grandparents, 4 great grandparents, 2 aunts and 1 great-uncle. What a wonderful support group for Sammy and Brandon!

I will be posting updates on this blog as well as on Facebook. If you are friends or family who would like more and faster information you can follow me on twitter @chasetonsstory

The twitter feed is a locked account so please let me know who you are when you ask to follow. I may not recognize your user name.

For all of you who have kept Chaseton in your thoughts and prayers we thank you!

Chaseton’s Grandpa

Yesterday was our monthly visit with our Friendly Neighborhood Cardiologist. Chase’s Aunt Cyanne is up for a visit, and got to experience the wonder and amazement that is our appointment. (har har.)

Like usual, Chase was stripped and hooked up to monitors. (He doesn’t mind.) He flirted shamelessly with the nurses, and was weighed in at an impressive 16.4 lbs. His numbers are still creeping down, which is to be expected. (In fact, if they weren’t it would probably be a bad thing because it would indicate that he isn’t growing well.)

Next Sunday Chase will be six months old (be still, my heart!) and our original estimate for his surgery was anywhere between six to nine months. So far, though, it’s looking like we’ll be on the far side of that estimate – Dr.C said that when a baby looks “as good as that”, there’s no reason to rush things; especially since his blood-oxygen levels haven’t yet fallen to 75, which is normally what people look for when they start talking about surgery.

So, that’s pretty much all of the news we’ve got. Dr. C also got ahold of the Big Wigs in Atlanta to set up a consultation with us and the surgeon – they called this morning and we will be going up at the beginning of April. We’ll see how that goes…

Toodles!

Hello there! Sammy here – or, more commonly known as “Chaseton’s Mom”. I want to apologize. Chaseton’s Grandpa handed this blog over to me quite a while ago, and I have failed dismally at keeping up with it. I’d like to say that this was completely accidental and that in the whirlwind of New Mommyhood things just got out of hand…but that would only be partially correct.

To be honest, I’ve been willfully ignoring this small space of internet. Please don’t be offended! I love this blog, and I love what my Dad has done with it. But it was created to serve a purpose – to keep everyone In The Loop while Chase was experiencing his first hospital stay. And for a little while, I just didn’t want to think about any of that. For a little while, I wanted to pretend that the every-day life we were living was all that there was to it, that I did not have the kind of baby that has his own blog and a medically-dedicated savings account.

And so, for the last four months or so, that’s what we’ve done. Chase has been amazing.

He is eating,

and sleeping,

and growing.

He was weaned off of his medications shortly after we arrived home, and hasn’t been taking anything since. Due to his own insatiable appetite, some amazing support, and a couple of wonderful lactation consultants, he has been eating on his own without the help of any tubes (or even any bottles.) We celebrated his first Halloween,

his first Thanksgiving,

and his first Christmas.

(And a few smaller holidays, too.) He has grown into the happiest, most easy-going baby I’ve ever met.

We hit three months,

four months,

five.

And things have been amazing.

Besides the monthly Cardiologist visits, it would have been easy to forget just what we’re in the middle of. Well, that and this:

Our pulse oximeter. We were lucky enough that our insurance covered a rental – one of the things that has allowed us to see Chase’s Cardiologist as infrequently as we do.

Now, though, things are starting to change. His “numbers”, as we refer to them (his blood-oxygen levels) are beginning to drop. We notice blue around his mouth and on his hands and feet with more frequency. Honestly, it’s alarming. But this is when I try to remind myself how lucky we are – how we’ve had these few months that many parents with Heart Babies never get. Medication-free? Eating on his own? Growing exactly on par with a “healthy” baby and meeting all of his milestones?! This child is actually in the 75% for height!

And I know how rare that is. I know how many babies are blue, constantly. And I know how lucky we have been. It is a comfort, but the honeymoon is over, and reality has started to sink back in. I find myself thinking about a Hospital Packing List on most days, and my parenting choices are made with his next visit in mind: “How can I soothe him in a way that will work in the hospital, too? Will introducing solids have any effect on his eating habits after surgery?”

And that is why I finally decided to try my hand at this whole thing. First, I re-read all of the original posts. It wasn’t easy, but I think it was necessary. Now, I’m forcing myself to look ahead. I will try to ease all of us back into this thing as slowly and positively as I can, with more regular updates about Chase and, when the time comes, our preparations. Hold on tight, folks, it’s gonna be a bumpy ride.

Chaseton’s Grandpa.

As good of a day as you can have in the hospital. Chase had a great night…all of his feedings were successful. They removed the feeding tube about an hour ago, and the good news keeps coming. Chase is sitting in his car seat as I type this. No, he is not going home today…the hospital runs a car seat test on its babies before they are discharged. The baby is loaded into his seat and gets to relax in it for an hour and a half; they closely monitor all his vitals to ensure that his seat does not put him in distress. That’s really important because his ride home tomorrow will be at least 2 hours long.

Yes Chase is going home!

Unfortunately we will have to come back in a few months for his surgery.

We were able to spend the entire day with Chase. He is doing great! I had a chance to sit down with him and have a good long talk about his future. Right now he is wavering between the NFL and NASCAR for top career choice.  He had another good meal with out using the tube. We have hopes that they will decide to remove it.

One happy Grandpa.