One Month

Joey is one month old today! We celebrated with an outing to Target with Grandma and lots of naps!

The First Week Home

This post is long overdue!  So I will cut to the chase and get on to the pictures of our handsome man because I know that's why you are all here! So sorry to everyone that has been checking the blog, Instagram and Facebook for updates, but as you can imagine, we have been a little busy!

Joey came home on Friday afternoon, so that means he has been home for almost a week, and the time has simply flown by!  And yesterday he officially turned four weeks old!

We have spent the last week trying to figure out schedules and rhythms, and loving on our little man.  Jamie has gone back to his regular work schedule and my mom has been helping on the days that he is gone, which is a big help. I even got to go get my nails done this week!

Joey is a great baby.  He is breastfeeding and eating well, gaining weight as he should be, and sleeping relatively well. He has about one inconsolable outburst each day and it takes him a while to calm down, so we are still managing his pain with a little bit of Tylenol.  But other than that, when he is wearing a onesie, you would never know what this little guy went through just weeks ago.  He loves being in his MamaRoo when he is sleeping, and loves sleeping on his belly on Mommy, Daddy, or Grandma's shoulder.  He still hates the hiccups and he also dislikes getting his diaper changed and having a sponge bath. Nap time is our favorite time of the day!

Our family of three braved the outside world on Tuesday for a pediatrician appointment and to one of our favorite local restaurants, The Market Grill!  It was easy because Joey knocks out once he is strapped into his car seat. (We definitely hope that that continues to be the case for a while.) We are very pleased with our pediatrician so far.  He comes VERY highly recommended and isn't actually taking on any new patients at this time, but because of the other great doctors that we have had so far giving him the low down on Joey, he was happy to take him on. When we first met him in the exam room, he joked at how thick Joey's chart was! He was familiar with Joey's story and has experience with kids with pacemakers as well.  Everything looked great during Joey's exam and he weighed 8lbs 3oz, which puts him right on track; gaining an ounce a day since his discharge, which means he is feeding well.

Scruffy loves his Baby Joey already and gets really concerned whenever he cries.  We were worried that Scruffy would be very jealous and act out when Joey arrived, but he is doing very well with the change.  He is curious, but calm and gentle.  Jamie and I can't wait until they become best buddies!

Joey has had a few visitors this week.  My parents come over regularly to spend the day, bring food, or help run errands.  But Joey got to meet his Grandpa Don, Uncle Sean, Uncle Tim, and Great Aunt and Uncle Theresa and Glen for the first time!  He can't wait to meet everyone else in the next few weeks also!

For those that are wondering, I do plan on continuing to post on the blog, but it definitely will not be as frequent as the updates were when Joey was in the hospital. I can't promise a specific frequency of updates but I will try to do at least a weekly update while I'm still on maternity leave, but once I'm back to work I will probably move on to monthly updates. Thank you all for allowing us to enjoy this special week.  Now you can all bug us about visits!

Guess What?!

I know Joey! It is shocking! You're going home tomorrow!!!!

After 23 days in the CTICU, two major surgeries, lots of tubes, wires, tests, and a pacemaker, Joey is finally coming home! Tonight they will do his hearing screening, car seat test and other discharge things so that we can be ready to go tomorrow! We are also going to try breast feeding today!

We have been waiting for this day! Yay! Yay! Yay! Yay! Yay! Yay!

In Recovery... Again

A quick post surgery update.

Dr. Herrington, the lead surgeon for Joey's pacemaker surgery, just came into the waiting room to tell us that all is well!  Joey is finishing up his surgery now and will be heading back to his room for recovery. Jamie and I have to wait in the waiting room until we are notified that he is all settled into his room.

The surgery took a little under two hours. He will return to the room with all of the "attachments" that he had after his first surgery; breathing tube, chest drain tube, temporary pacer wires in his abdomen, a main line IV in his neck, an arterial line in his arm, his PICC line in his leg, NG tube, and of course his newest accessory, his pacemaker. The recovery should go much quicker this time around and we hope to have most of the tubes and wires out by tomorrow. Once the breathing tube comes out we can continue his bottle feeds, but for now he will get nutrients through an IV and NG tube. They will test the pacemaker and then remove the temporary/external pacer wires. It is our understanding that his pacer box will be somewhat visible in his belly as it is place behind the muscle and his ribs, but there is not a whole lot of room for it in a tiny baby, so he will have a bulge until he grows a little bigger. He is also back on most all of the medicines, antibiotics and sedatives that he had just been weaned off of as well. We hope that the weaning goes as well this time as it did last time with no complications or withdrawals.

Thanks again for all of the support you have given us through Joey's a Heart a Journey so far. We can't wait to go see our boy! But until then, Jamie and I are trying to keep busy by working on a puzzle in the waiting room...

Back to the OR for Our Little Super Hero

I apologize for the lack of updates for the last couple days, we have kind of been in a holding pattern with little to no changes so there hasn't been much to update you all on.

Joey is two and half weeks old now and weighs 8lbs 2oz.  He loves being swaddled and earring socks. He HATES the hiccups, but gets them every time he eats. He loves to make squeaky sounds and he also started giving mommy little smiles yesterday. He is just livin' the typical baby dream of sleeping, eating and pooping all day. Daddy went back to work on Thursday, will work through the weekend and then take the beginning of next week off to again join Mommy at the hospital. My schedule remains the same; I leave for the hospital super early to beat traffic and stay until about 8 o'clock each night. I try to nap when I can at the hospital, in between pumping, feeding Joey, talking to random doctors and cardiologists that come to check on him and eating some meals myself.  April 1st has come and gone, and there are still no visitors allowed on this floor and we are still wearing masks in the room too. I can't wait 'til this gets lifted!

The two concerns from our last update remain the same; eating and heart block. One is getting much better, the other is not showing any signs of improvement. 

For the last few days, it seemed as if Joey had plateaued when it came to the amount of milk he could take by bottle. His goal feeds are 65ml every three hours and he would consistently be able to get about 30ml down before falling asleep, getting bored, or getting tired. (Feeding through a bottle is like running a marathon for Joey.) We kept at it, allowing him to try to bottle feed for about 20 minutes and then whatever was not finished he would get through his tube.  Yesterday afternoon something finally must have clicked! At his 3pm feed he got about 50ml down and his 6pm feed he drank the whole bottle! The night nurse said that he night feeds went back to being about 30-50ml, but we will see how he does today!

Joey's continues into his 10th day of complete heart block, and is not showing any signs of improvement.  The nerve does not seem to be firing at all. So this is where the not-so-good news comes in.  Joey is scheduled for surgery tomorrow to get a pacemaker. This surgery will be another open chest surgery, but not open heart. Dr. Herrington will be the lead surgeon. They will go in through his current scar and, it will not require him to be put on the heart lung machine either.  My current understanding is that they will open his chest, place the wire on the heart, test out where the best placement is, place the pacemaker behind the muscle in his abdomen through a new incision and close him up. Because he is so small, you will be able to see the pacer box in his belly, but as he gets bigger it will settle deeper into his abdomen and you shouldn't be able to see it. I also believe that he will definitely need follow up surgeries to change the battery or possibly the pacer box, which they would go in through his belly incision, but he may need additional open chest procedures down the line to replace or repair wires as his grows, but this is not always necessary. 

The unfortunate thing is that all of those tubes, wires and medications we worked so hard to get him off of in the last week will all be coming back.  Although we are told that his recovery from this surgery and removal of the breathing tube and IVs will happen very quickly post op compared to the last surgery. He should be recovered back to his current state in about three days.  And once this is all cleared up, we can move to the CV Acute Care unit, work on feeding, and then come home! We can't wait for that day!

Keep Joey in your thoughts tomorrow for his surgery and for the next few days as he recovers.  We can't wait for this hurdle to be over and done with!