Benjamin Glenn Turns ONE!!!

Benjamin Glenn Bogna is ONE!!!

So many mixed emotions.  Happiness, gratitude, excitement and yes, even sadness.  But at the end of the day even in this exact moment I feel peace and gratitude.  I am incredibly grateful to write this as my healthy, beautiful son sleeps in his bedroom.

In the last month I have done some serious reflecting on the past year given the holidays, Benjamin's upcoming birthday and the New Year.  Most people say the day their son/daughter was born was one of the best days of their life.  I feel a little robbed that I can't say that.  If I'm being honest, it was probably the worst day of my life.

I can't help but think back on where we started when Ben was born a year ago.  I can't help but remember all the doctors, the monitors, the beeping, the IVs, the tears - I CAN'T FORGET IT.  Every single detail of those horrible days.  And then I think, maybe I don't want to forget it, maybe I need to remember so we can have those memories to look back on, to lean on and to help push us forward.  After all, there was so much GOOD that came out of those horrible days.

The good thing about a doctor giving you "worst-case scenario" is that you are prepared for just that.  When Ben started to do things that we were told he may or may not be able to do, we celebrated.  Each milestone Ben surpassed we cheered him on.  And that's just what we've been doing in this first year.  Celebrating each of Benjamin's moments.  Soaking up our "perfect" boy.

For anyone wondering about Ben, here is an update on our guy.  He is doing fantastic.  He recently had an assessment by his therapists (he gets physical and occupational therapy) and UCLA doctors and he is doing SO WELL.  He is only a couple months behind in a few areas and all we hear is encouragement for Ben's future.  Everyone is so impressed with all that he does.  He is crawling all over, babbles all day long, wrestles with Dad, gives high-fives, loves to dance and listen to music, and is really learning to LOVE food.  I have myself a busy little one-year-old.

Today we celebrate the life of our Benjamin Glenn, my how you have blessed our family in just one year.  Our cup truly runneth over.


Here are some pictures from our Christmas shoot.

 

Already have this one framed of me and my guy

 Isn't he just the cutest?

Playing Catch-Up! Fall/Halloween Pictures Blogged!

Oh geez, have I been lagging?! I feel like I need to play catch up with everything that has happened the last few months, lots to write but I am going to have to break this up in a few different posts.

Benjamin is going to be ONE YEAR OLD in a week! I can not believe it.  It really has just flown by... and with the year birthday coming up it has given me plenty of time to reflect so a blog post for his birthday will be coming up soon.

Soooo here is the start of some updates from the last few months.  Benjamin was a bear for Halloween.  We did some pictures with him at Lombardi's Ranch.  I think he may be the cutest cub I've ever seen.

 

We spent Halloween with family eating chili and handing out candy to trick-or-treaters.  Things have been busy in our house.  We moved. Again.  If you didn't know, we moved TWICE this year.  Yup, I'll be posting some pics and giving more details soon.  Let's just say we are all so happy and finally feel like we have found our 'forever' home.

More to come soon, just wanted to get started! XO

How I Got Through It

Some days/nights were better than others when we were in the hospital.  But even the best day didn't change the fact that at night we had to go home and sleep.  without Ben.

I recall one particular night.  We got home around our usual time which was typically between 11-12. For some reason on this night I was just mad. I was mad at God. I was mad at the doctors. I just wanted my baby. I laid down in a ball on Benjamin's nursery floor and just sobbed. It felt so good. I felt Tim's arms wrap around me and hold me. He was always there. We had literally spent every second together since I entered the hospital (minus his sick days). He was my rock. There were plenty of times I'd start to cry at the hospital out of nowhere. He would always encourage me. "Baby he's going to be okay. His surgery is just in three more days" or "look how far he's come. He's breathing on his own. Surgery is over" or "it's just feeding. This is nothing compared to open heart surgery. We got this." I love my husband more than anything and I loved him like crazy when we got married. But this experience, seeing him be strong when I was weak, walking beside him as he led our family, listening to him explain everything to our parents - I have never been more certain in my entire life that he is my soul mate. That we are the only people that could face this experience together and come out stronger. Now I just have to remind myself of this when he starts poking at me and bugging me next time. 

Our families were also our biggest supporters.  Tim and I are so fortunate to have the best parents in the world.  No joke.  I don't know how it happened, but we both lucked out.  They were there for us EVERY day, if we needed laundry done, clothes brought from home, milk stored in their freezers, food, a shoulder to cry on... you name it, they provided it.  We couldn't have done it without them.  I am so grateful for my parents and for the parents I gained when I married into the Bogna family.  Simply amazing men and women that we are so blessed to have as grandparents for Benjamin.

And then there were other things that happened while we were in the hospital that really helped lighten the mood.  One day Tim and I went to get dinner (we were kicked out of the NICU every day for an hour 7-8PM during shift changes).  Tim and I walked back from dinner with his leftovers and he was keeping an eye out for someone to give them to.  Well, he found a guy and offered him his leftover sandwich (an uneaten half of a sandwich).  The man asked, "is it vegetarian?" Tim said, "are you?"  Homeless man: "kinda." Tim laughs. Homeless man: "Well, what kind is it?"  Tim: "chicken."  Homeless man, "EWWWWWW!!!! that's the last thing I'd eat!!!!"  Who knew that beggars really can be choosers. :)  That really helped to lighten the mood that day.  When you're in the hospital there aren't many positive things going on so you really have to take what you can get for laughs.

So grateful to ALL of our family and friends that supported us, that prayed and continue to pray for Benjamin.  You are all the reason why he is doing as well as he is.  From the bottom of our hearts, we love you all.

And just because he's the cutest and happiest little EIGHT month old around, here's a picture of our nugget...

Benjamin Button

The first couple months were challenging. We were adjusting to life with our fragile newborn and learning how to feed and give medication to Benjamin through the g-tube. We left the hospital with a stack of medications. Throw those in with the crapload of syringes, tubes, med tape, iv pole, and all the breast pump parts and our place looked like a doctors office. It was our new normal. 

Ben was a bit of a colicky baby. I felt guilty for getting frustrated with his cries. I remembered being in the hospital and looking at Ben when he was incubated and cried out and all there was was deafening silence. Those days were awful, so instead I would try to say a prayer when he cried and thank God that I could hear his beautiful voice.

Tim went back to work two days after we got home. His hours are not so great so he was out of the house by 2am each day for work. This meant I would be up at night feeding Ben through the tube, giving him medications, then pumping then trying to catch some sleep then starting all over again every 3 hours. It. Was. Tough. 

For those of you that have had a tube fed baby I applaud you. It is not an easy thing. At the time going through it, it doesn't seem as hard because you're used to how hard it is. But looking back, I can now say I'm really proud of myself. I won't go into details of feeding but it was a lot of work and preparation, stress and heartache. We dealt with quite a few messes (it's easy to spill when you're feeding a baby through a syringe and tube). I was constantly stressed about the button, Ben had granulation tissue build up around it which is painful and a pain in the ass to clear up. I'm so grateful to be past the 'Benjamin button' period now. Ben did not take any food orally until he passed his swallow study which was March 13th. From that day forward we made it our job to learn how to take a bottle, to then be able to take a full feed or at least enough to get Ben to gain weight.  It took a lot of work but we shouldn't have been surprised because Ben is a fighter.  He had his button removed just shy of three months after it was placed on May 6th. 

Our Outlook

When we received the news that Benjamin had suffered a brain injury and that his mobility, communication and vision could potentially be affected it shook us to the core.

When Tim and I were sat down by the team of doctors we were just so concerned about whether or not our baby was going to live, the brain damage was the very least of our worries.

When I think back to that day when the doctor told us of the damage I remember my amazing husband.  Tim had tears in his eyes and his voice was trembling when he asked the doctor, "So I understand what you're saying, he may have some sort of brain damage.  We don't care what he will and wont be able to do, we just want to know if we'll be able to take our baby home with us."  Sometimes I think doctors are so concerned about what is "wrong" that they forget to share the positive news: you will be able to take your baby home, he will LIVE.  <-- That is what we really cared about.

And that has always been our priority: getting our baby home.  It's amazing how quickly your perspective changes about certain things.  For example, whenever I encountered someone with a disability my mind automatically associated that with hardship and something that you have to 'deal' with.  After spending seven weeks in the hospital and watching so many people come and go, sick and well, I've realized that it truly is all about your perspective.  We all have different battles that we may fight each day, some deal with depression, addiction, physical pain, mental pain, etc.  Having a disability is not an inconvenience... we never EVER want Benjamin to feel that he is an inconvenience to us, or that a condition that he may end up having makes our life harder.

Of course, we do think about the fact that our son may not grow up able to play sports or participate in other activities that both Tim and I were raised doing.  It makes us sad to think that he may 'miss out' on some of those things, but we truly want to try and give Benjamin the best quality of life possible.  We never want him to feel like he can't do something or that he is anything less than amazing.  If he can't run the race, we'll carry him.

And just as a side note, boy, were those neurologists wrong.  Benjamin continues to amaze doctors and his physical therapists every time he sees them.  He is acting just as any other 7 month old baby would.  He is one of the most social babies I have ever seen - anyone that gives him attention and a smile will be sure to get one right back from Ben.  He also loves to blabber, blow bubbles, claw at faces, and tries to eat my nose.  He also sits up on his own and knows how to pivot on his tummy.  Being that he didn't really start any tummy time until after his G-tube was removed (May), we think this is a pretty good accomplishment.  He continues to get physical and occupational therapy and shows progress every week.  We thank God every day for our happy boy.

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.