Heart Surgery Recovery to HOME

My baby boy looked like a doll.  He did not look real.  The doctors and nurses told us to prepare ourselves for when he came out of his heart surgery.  They told us, "he may come out with his chest still open... he'll also have many pumps, tubes and IVs."  Um... okay.  I hated it.  His chest was left open and there was a piece of clear film over his chest.  You could literally see inside of his body.  It was nuts.  The surgeon left the chest open so that the swelling could go down inside.  He had a lot of extra fluid and this was supposed to help.  We were told it would be closed 1-2 days later.  He also had a large tube coming out of his stomach that was draining the blood from his chest and about 4-5 lines coming out of him - his PIC line, IJ, a couple IVs and the breathing tube.

I'm not going to share any pictures of what he looked like after surgery, those are a little too personal and to be honest I didn't take any, I don't want to remember my baby in those moments.  Tim took pictures so that he can show Ben later.  Tim also thinks that scars are pretty awesome, he loved to tell Ben in the hospital how much "chicks dig scars."

Although Ben looked awful coming out of the surgery, I still felt such a huge weight had been lifted off my shoulders.  That night Tim and I left the hospital at 8PM which was the earliest we had left since he had been born.  And I'm pretty sure that night we got the best sleep we had gotten in a few weeks.

The next day was still pretty hard to see Benjamin so sedated.  I remember getting choked up and Tim just reminded me how blessed we were that surgery and the worst was all behind us.  He was only going to get better from this point.

Tim was right and Benjamin continued to get better, even within hours.  The day after his surgery his chest was sewn up. He continued to get stronger and four days after surgery he was extubated (the breathing tube was removed from down his throat) and he got a nasal cannula.  Looking back, it's crazy the things that get you so incredibly happy.  When Ben got his nasal cannula I was crying tears of joy.  Our baby boy's oxygen levels were getting normal and he was able to breath with just a small amount of help!  It was one of the best days in the hospital.  Here are a couple pics.  I love the bond that Ben and Tim share.

 

I wish I could say that from that point it was so easy and all he did was heal and get better and now we're home, but that's just not the truth.  Before his surgery the nurses warned us that feeding would be one of the challenges to get Benjamin home.  Let's just say before the surgery you could have told me anything and it would have gone in one ear and out the other because the only thing I cared about was when he was having his surgery.  In retrospect, maybe I should have listened to the nurses when they talked about feeding.  It sucked.

I love this little face.  P.S. they shaved the top of his head for surgery 

He started with feeds through his NG tube (through the nose) which is how he was getting milk before surgery.  They worked him up to full feeds on that.  Then an occupational therapist tried to give him a bottle but thought he was aspirating.  They ended up doing a swallow study and a few other tests and determined that Benjamin should get a G-tube.  This didn't set right with me.  About a week later I demanded they try the bottle again, he did great.  So.... they did another swallow study and this time it did show he was aspirating.  Ugh, we tried Ben, we tried.  This is where we had one of the toughest decisions to make.  Tim and I struggled, we spent hours talking to doctors, doing research, praying and just trying to decide what was best for our son.  We wanted him home but were also weary of him having to do another surgery.

Each doctor was pushing for the G-tube and nissen fundoplication.  Essentially what it came down to was a doctor explained to us that in the chance that Ben aspirated he could potentially get pneumonia and game over.  So, our decision was made.  Ben had the G-tube/nissen surgery on February 7th.

He recovered fairly quickly from that surgery.  We were taught how to use the G-tube.  He wasn't allowed to take anything orally until he passed a swallow study, and the swallow study wouldn't be happening until March 13th.  We knew it would be hard but we were so excited to get our baby home.  I can't tell you how many times in the weeks before we had started our sentences with, "when Ben comes home... "  We had so many plans and couldn't wait for our lives to start with him.

Here's a few more pics of Ben from the hospital...

First bath in the hospital

The day he got his nasal cannula out.  Ben was very popular in the hospital.  One of our favorite nurses knitted him this cute beanie.

Tim got sick and had to stay home two days.  This was the day he came back.  Both boys were pretty happy to see each other.

Snuggling with my buddy

Ben's "I'm going home" dance

On Monday, February 17th we took our little Benjamin Glenn home with us.