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.