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!