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.

From Benjamin's Birth to Heart Surgery

The first couple of days after Benjamin was born are still kind of a blur to me.  I remember feeling so exhausted mentally, physically and emotionally.  There was so much information to take in and so many doctors to meet.  There is no way I could have done this with anyone other than Tim (will save that for another post).  On day 3 in the hospital we had some of Tim's family visiting and Tim went to take in his brother to meet Benjamin.  He entered into a chaotic scene.  Benjamin was blue and had had a seizure.  Doctors and nurses surrounded him and from what he told me, it was the scariest thing he had ever seen in his life.  I am so glad I wasn't there to witness it.  Again the tears and worries increased as we were unsure what was happening to our baby and what he was going through.  The doctors told us they were going to take him to get an MRI to rule out a stroke.

Fast forward to the next day we were sat down by a team of doctors in my hospital room.  I can remember these moments like it was yesterday, Tim and I sat hand in hand as the head NICU doctor explained to us that the MRI showed that Benjamin had been deprived of oxygen for some time and it had resulted in brain damage.  They were unsure to what extent the damage was and wouldn't be able to tell us exactly what it would affect.  That would be something we would just see as time goes on and he grows older.  They were unsure when exactly the initial injury had happened but hypothesize that it occurred while I was in labor.  In fact, the doctor who read the MRI asked our doctor if the patient had been strangled, really?!  Well, the umbilical cord was wrapped around Benjamin's neck when he was born.  Most babies can withstand the cord around the neck in the womb, however they think that in Benjamin's case the cord around the neck coupled with Benjamin's heart condition was too much and may have caused the injury.  We don't know for sure and we will never know when exactly the injury happened.  It's not something we choose to dwell on.

Because of this incident that happened when Ben was 3 days old it delayed his heart surgery for TWO WEEKS.  The longest two weeks of my entire life.  I was discharged from the hospital on day four so Tim and I chose to stay close to the hospital so that we wouldn't have to worry about driving back and forth and dealing with traffic.  This would not have been possible without the support of our family and friends.  From the bottom of our hearts, thank you for making that possible, we are extremely grateful to all of you.

Before the surgery Benjamin was hooked up to many many things, a breathing tube down his throat, a couple IV's, a PIC line, an EEG monitoring, etc.  He had A LOT going on.  It was very hard to not be able to hold my baby.  I held him once since he had been born before the incident had happened.  We had a lot of ups and downs during those two weeks, since Benjamin was on so many medications he was pretty much sedated most of the time.  However, he still wasn't getting the oxygen that he needed so he would continually desaturate to very low numbers and have to be bagged multiple times a day in order to get his SAT levels back up again.  I learned way more than I ever wanted to know about monitors, heart rates, oxygen levels, respiratory rates, blood pressure, and so on.

We spent our days reading books, singing songs, talking to Ben, pumping (me), talking to nurses and doctors, and then taking breaks to eat.  We were there all the time for Ben and we wanted him to know it.  We went to our hotel to sleep and then we were back at it again the next day.  You would think that the days were long and boring with a baby that can't do much of anything yet, but it's incredible how quickly they could pass, except for those moments we were holding our breath waiting for Benjamin's SAT levels to come back up.

This picture was taken the second time I got to hold him. Pure bliss.

On January 14th when Benjamin was 17 days old he went in for his open-heart surgery.  The surgery took about 3 hours from prep time to finish and everything went wonderfully.  I have never felt so much relief in my entire life.  We had both sets of parents there with us and the joy we felt in those moments was overwhelming.  The worst was behind us.  It was time to recover and get Benjamin home.

Never BEN better. Benjamin Glenn Bogna: Birth Story

See what I did there? Never Ben Better, and that is the truth.

Benjamin is almost seven months old and I can't believe all that has happened and just how fortunate and blessed we have been since he's come into our lives. Many people have inquired about his health and so many have offered support. We are just so grateful to everyone for all that you have done for us. It's hard to express it in words. We have been humbled by this experience and what everyone has been willing to do for us.

Since most people who read this are family and friends you probably already know most of Benjamin's story.  I want to remember all the details (well most of them) about everything that has happened so that when Ben grows up I can tell him all about the crazy journey he's been on and how far he has come.  I feel like this will be a good place for us to journal and then continue to give updates on Ben, especially so we can have something to look back on.  And now that I feel like we are really in a good place, I am finally feeling comfortable enough rehashing and talking about what we went through and how life is with Benjamin. It's great by the way. :)

So with that I'll start with his birth story.

Benjamin Glenn Bogna was born December 28, 2013 at 7:24 AM.  Here is a picture of him just after he was born and before he was hooked up to everything.

The 36 hours before that happened so quickly.  Unfortunately I truly can't remember every little detail that happened but here's my best shot at a recap!

We checked in to the hospital on December 26th at about 7:45 pm. I was a week past my due date and scheduled to be induced. We were put into a temporary room until a private room was available. I was hooked up to a couple belts to monitor baby's heart rate and contractions. Shortly after, a doctor came in to discuss how we would proceed with the induction. We had the option of a couple different medications that would help to get me dilated and the labor started. We decided what medication to start with and the doctor left to go get the order in. 

About ten minutes later I felt a contraction (similar to ones I had been having in previous days at home, not painful) and about 4 nurses and a doctor came rushing into the room. First they had me try to lie on either side and nothing changed so they told me to get on all fours and put an oxygen mask on me. It was chaos with a lot of people talking at once and then they gave me a shot of terbutaline in my arm. Apparently I had a long contraction and the baby's heart rate had dropped. This changed the course we were going for labor. I was given a stress test to see how well the baby would tolerate contractions and he did well so we moved forward with cervadil to get my labor started. We slept that night and I was woken up again in the morning with a similar situation as the night before. The cervadil was pulled out and we repeated the same process that happened but made it with no shot in the arm this time. 

It was a scary experience thus far. A doctor came in to talk to us and told us that if at any time we wanted to move forward with a c section we could. I really didn't know what to do. I just wanted to follow the advice of our doctors so with that we moved forward with the foley balloon. This would help to get me further dilated. The balloon was in for about 4 hours before it fell out. During that time my contractions had gotten stronger but then backed off again. I was told to wait for the epideral as long as I could, especially since I wasn't dilating very well on my own.  When the foley balloon fell out I was still only at a 3-4 cm dilated.

At this point it was late Friday afternoon and I was told just to wait for a couple hours to see if I would dilate on my own anymore before we would proceed to break my water and start pitocin.  Fast forward a few hours, doctor broke my water and we waited some more to see if contractions would start.  I was having contractions but still not dilating further.  They started me on a small amount of pitocin and OWW contractions hurt!  I tried to wait as long as I could for the epideral and ended up getting it in the middle of the night Friday (around 1AM).  It helped me sleep and then at 7am more nurses and doctors rushed in. I knew the drill at this point but this time even with the shot apparently baby's heart rate was still down. They rushed me into the OR and prepared for an emergency c section. During this time the baby's heart rate had come back up but they still felt it important to move forward considering all that had happened so far. A doctor finally filled Timmy in on what was happening and he scrubbed up and came into the room. I was so scared and shaking uncontrollably. For those of you who have had the tubertuline shot you know what it does to your body as you are coming off of it. I'm so grateful for my husband who held my hand and told me everything was going to be okay. I was so scared for my baby who had already been through these contractions that brought down his heart rate. I wanted him out but I wanted him safe. 

As they worked on my pain medication (a spinal block) the doctors talked me through what was happening and what I would feel. Then as they moved forward with everything I was literally holding my breath just waiting to hear my sweet baby. As they were going to pull him out they asked Tim if he wanted to take a look. Tim watched as Benjamin Glenn Bogna made his entrance into the world at 7:24 am. I continued to hold my breath until I heard him cry. That sweet cry was music to my ears, at that moment I was so happy. I could finally breathe and I cried like a baby. I felt reassured that the baby was here and he was fine, he cried. 

As they were sewing me back up Tim was with Benjamin while the NICU doctors came in and checked him out. They congratulated Tim on a healthy baby boy and left. Our nurse, Grace, continued to do a couple tests on Ben and noticed his coloring was off. She called the doctors to come back in and check him one more time. When they came back in this time they agreed with her that something wasn't right. They cleaned Benjamin off, wrapped him up and brought him over to me for literally 5 seconds. I kissed his sweet squishy face as much as I could. Then they took him for tests.  I had no clue what was happening.  For those of you that have had a C-section you know you're pretty out of it... well that combined with the shot of tubertuline that had been given to me just moments before the C-section made me an anxious wreck.  I was wheeled to the recovery room while Tim went with Ben.

I remember laying in the recovery room feeling happy but confused. I was still very shaky. And then it hit me - it had been over an hour - where was my baby and husband?! 

It was as if they had heard me and Tim came in accompanied with a doctor... and no baby. I felt my heart sink. What was wrong with my baby?  My heart was racing.

The doctor explained to me that Benjamin was born with a heart defect: transposition of the great arteries. You can find all the medical jargon and explanation here but essentially Benjamin's two main arteries going out of his heart were switched which is a problem because too little oxygen is in the blood that is being pumped from the heart to the rest of the body.  If he didn't have open heart surgery he would die.  My world was crumbling. I don't think I could comprehend what was happening as the doctor was talking to me. I didn't know what any of this meant.

When she left Tim and I sat together and cried. Was our baby going to be okay? He showed me pictures and videos he took of Benjamin as they were checking him out and setting him up in the NICU. He was beautiful. I was heartbroken and scared that my baby was in pain.  Little did I know that this was just the beginning of what would be a very long journey for our little family.

Tim and I had been told that nothing can really prepare you for parenthood, and all those people were right... nothing could have prepared us for this.  And even if we had known about the heart condition before Ben was born I really don't think anything could have adequately prepared us for the NICU and what we went through.  But I can tell you this, we are stronger than ever because of it.