Tiny but Mighty Em

  Another successful surgery This is technically surgery number 3 for Baby Em. 2 heart surgeries and 1 g-tube.  Robert and I were in the waiting room for 6 hours. We started to get VERY nervous at hour 5. “If something was wrong, they would call us, right?” Man. The wait was horrid this time. Last time, we also received a phone call from the nurse halfway through with an update… not this time. Last time, they were done within three hours... So all the worries. The surgeon came and spoke to us and explained with pictures how he repaired the valve. Long story short, the surgeon went with Plan A- a repair.  Basically, he cut some of the muscle that was around the heart that was preventing the valve from moving correctly. Next, he added some cow pieces to make a patch. This patch was essential to get the valve thicker so the two flaps can touch (or get close to touching) so that there isn’t much regurgitation.  This repair is not the end. This surgeon truly took his time...

  We have NEWS! We finally spoke with the surgeon! Open Heart Surgery Number 2: scheduled for Wednesday early morning (7:30 AM for my prayer circle friends) Here is the game plan (one heck of a plan) 3 plans total and “won’t know til we get in there attitude)  Plan A: Possible repair, but not likely because he has so much leakage. This is always the preferred method. Repair the valve so he doesn’t have to be on blood thinners and has time to grow to an adult size valve to replace later. The original repair was fixing the stenosis.  Basically he had a narrow canal, they made it bigger. Now he has a narrow valve (stenosis) AND regurgitation (blood traveling the wrong way.) Because of that leakage, this is most likely not the scenario, but we are hopeful. He would still need surgeries in the future to replace the valve and lots of monitoring if this is the plan that works. Plan B: mechanical valve if it fits (if the area is big enough). So, this is obviously the valve we wan...

  It’s about 8:45 am on a Friday morning, and I arrive at the hospital. I sign onto the computer because I can’t let my students down, it’s our first day of student lead huddles via breakout rooms- a pretty big deal. I explain to the nurse that I’ll be teaching from the hospital, but that doesn’t stop the millions of people that enter Em’s room.  During the morning student led  huddle, the pediatrician on call stopped by to explain to me that he will be transferred to CHLA. “They require a couple tests, so it will probably be tomorrow. We have to ensure he isn’t positive for Covid.”  “Simon says, put your finger on your nose!” my huddle leader shouts. I continue to have a very serious conversation with a finger on my nose.  He realized that I was rather busy with Simon says, and decided to cut the conversation a little short by explaining a cardiologist will be talking with me shortly. I nod and continue to be there with my students.  During this time, Em i...

  This cutie patootie is back in the hospital again. He is grunting when breathing. What does that mean? Well, basically he is trying to keep the air inside his lungs by this grunting method. In return, it means he is definitely struggling to breathe. This is very common for NICU babies the first few months they are alive, but as a 14 month old, he should have some strong lungs, but he doesn’t.  I sent the same video to the cardiologist, and they suggested that he come in today for an appointment. (Don't mind the messy messy clothes- He has a lot of spit up) Mind you, his cardiologist appointment was literally just moved from tomorrow to next week. Em likes to move things at a faster pace, obvs. Nikki, the BEST nanny ever, took him to the doctor on pretty much an emergency basis. She saw many doctors today. From the regular Peds to Lead Peds saying he was perfectly fine. Then, they double checked their work, called cardiologists, and admitted him.  While here, he has done...

  I think back to the time I visited Emmett right after his surgery. He was hooked up to so many tubes, wires, machines, his chest was blood red and recently sliced and diced with a red zippered line shooting downward toward his belly button.  I don’t know how I will get through this again. This repair was supposed to last a little longer. Here we are, in the same boat as last time. Emmett will need Open Heart Surgery. Again. He will be cut open. Again. We will not be able to hold him under his arms for 10 weeks. Again. We are going to go through this. Again. Emmett needs a new mitral valve. This procedure is actually extremely rare. In fact, they highly recommend a mechanical valve, but they don’t make them that small. That is how rare his heart disease is. Because it is so rare, there aren’t many options for baby Em. We will be going with a Biological Tissue Valve. Unfortunately, those don’t last that long. They will eventually need to be replaced because they degenerate. Wh...

  So, what’s new?  Lots and nothing.  A super mad Em while hanging with mom during the day. A freaking happy baby while hanging out with dad at night Em is back in the hospital from a scare. With CHD, we are always concerned with rapid breathing, sweating, and turning blue. These are the signs that his heart is failing us. Well, Em has been sweating a lot lately, has had low grade fevers, and a horrible cough.  After many visits to urgent cares, doctors, and emergency rooms, we were told he had a severe cold, creup, pneumonia, to RhinoVirus (the common cold).  It started 2.5 weeks ago. The coughing was out of control. He had a fever, and I took him to urgent care.  A week goes by, and he’s still not better. We head to ER, and get diagnosed with creup. Next day, specialist calls and changes it to pneumonia.  Another week goes by, and still not better. Instead, I get a text from our amazing nanny. “His lips are blue, he’s cold, and lethargic.” I immediat...