Brayden's Story

          I am not trying to be a debbie downer here, but these last couple of days I have started forming my team and taking donations for this years March for Babies AKA March of Dimes. I have always be involved with March for Babies, but this year, and from now on, my passion is and will be much much greater. This is because of my own personal experience and what happened in the nine days after Brayden was born. I have just been thinking about it so much this week since I have been getting ready for this years march. So I have decieded to share our story, which is not an easy thing for me to share but if can inspire someone to get involved with this cause than it is totally worth it!  

            I could see that her lips were moving and I knew I should focus on what she was saying, but there was so much commotion in the room. I just nodded my head in response. Having just given birth to my first child, the nurse was probably just telling me he is wonderful. Then they took him.

            Wait! What? Where are they taking my baby? I looked to my husband for comfort only to find him visibly shaken and upset. Panic set in. There was something wrong with my baby.

            Brayden was born three weeks early and was in respiratory distress. He was taken to the special care nursery and started on oxygen right after he was born.

The next time I saw Brayden he had what my husband, Eric, referred to as his space helmet covering his face and feeding him oxygen. He was hooked up to all sorts of different monitors and IV’s.

            We had taken all the classes, read all the books, and listened to everyone’s stories but nothing could have prepared me to see my sweet baby struggling.

            In the morning the pediatrician informed us that Brayden wasn’t getting any better and needed to be transferred to the NICU at Children’s Hospital of Pittsburgh.

            It’s common knowledge that this sort of thing happens all the time. Most people know someone who has experienced it first hand. Maybe I was naïve, but it honestly never crossed my mind that my baby wouldn’t be born healthy.

            I’m in my mid 20’s, healthy, and didn’t have any major complications during pregnancy. Yet there I was, tears streaming relentlessly down my checks, trying to comprehend what the doctor was explaining.

            We got to hold Brayden before he was transferred to Children’s. As I held him in my arms I could feel his little chest rising and falling at a rapid pace, even with the oxygen he was working so hard to breath.

 I embraced my day old baby and was overcome with emotions. The fear that he wasn’t going to be ok, grief that he had to spend time in the NICU, anger that this was happening, sadness that he was hurting, and guilt that I couldn’t do anything to help him. Then they took him, again.

Shortly after Brayden was taken in the ambulance Eric left so he could be with him at Children’s. I hadn’t been discharged from St. Clair hospital yet so I had to stay with nothing but my agony to keep my company.

            Throughout my pregnancy I had played the scenario of us leaving the hospital in my head. It just seemed like such a memorable moment. The Mommy holds their precious new baby gently in her arms as the Daddy pushes them out to the car in a wheelchair. The new parents are a little scared, but mostly excited as they load baby up for the first time in his brand new car seat. Then drive off into the sunset to start their new life as a happy family.

My reality of leaving the hospital turned out to be absolutely nothing like the charming scenario I had envisioned over the last nine months.  The nurse pushed my wheelchair and there was no baby in my arms or Daddy by my side. All I had to hold was a picture of my sick little boy that was given to me before he was transferred to the NICU. I clung to my picture while tears once again gushed uncontrollably from my eyes.

Eric was coming to pick me up, but when we got to the parking lot he hadn’t arrived yet. The nurse helped me onto a nearby bench and went back inside. There I sat all alone and all I kept thinking over and over was it’s not supposed to be like this.

When we arrived at Children’s hospital Brayden had been put on a ventilator, meaning there was a tube down his throat. I was not expecting that so, needless to say, my emotional state did not improve. 

He had been sedated before the tube was inserted, so for the rest of the day and all of the night he slept, we did not.

The next morning he opened his beautiful blue eyes and we just stared at each other. It was the first time since he had been born that I felt a sliver of hope, although we still had a hard road ahead.

While Brayden was on the ventilator he sometimes would cry, but without sound. It was like watching a baby cry on TV with the volume muted.  Except this wasn’t a baby on TV, it was my baby and there was nothing I could do to help him. I would sit next to his bed and cry with him. I felt like he was thinking Mommy why won’t you pick me up, please pick me up. I couldn’t pick him up. It was heartbreaking and I have never felt so powerless.

After three long days and a dose of surfactant it was time to take out the tube. If all went well we could potentially be going home the next day. Our spirits were high.

After the tube was removed Brayden did really well for about 30 minutes. Then his oxygen levels started to drop and he had to be put back on oxygen. I was devastated, borderline hysterical. The doctors and nurses reassured us that this was normal. It was too much of a shock to his system to abruptly stop being on oxygen since he had literally been on oxygen since he was born. He just needed to be gradually weaned from the oxygen, which could take awhile. I did not feel reassured.  

The weaning process was not going well. I was trying, without success, to mentally prepare because we might not get to go home any time soon. My mental preparation process wasn’t going any better than the weaning process.

Then we were blessed with Nurse Becky. The majority of our nurses and doctors were phenomenal, but I owe my sanity to Nurse Becky. She had Brayden weaned off oxygen in two days.

Now Brayden just had to be observed for 48 hours to make sure he would do ok off the oxygen. Finally we felt like there was an end in sight, that we might actually get to go home soon.

            Brayden was doing great and I was starting to regain a little composure, not a lot, but it was a start. We were still in the NICU but at least now we could hold him! His 48 hour observation period was coming to and end. He just needed to pass the car seat test and then we could go home.

The car seat test was simple. He needed to sit in his car seat for 90 minutes without any problems.

Brayden was in his car seat and sleeping so we decided to get something to eat while we waited. We were elated while we ate lunch. All Eric and I could talk about was how excited we were to finally be going home. As we walked back to Brayden’s room I realized that an hour had already passed. 30 more minutes until we could put this nightmare behind us and go home with our baby.

We got back to his room and found Brayden back in his bed which was strange because his 90 minutes weren’t up yet. Eric went and found the nurse who informed us Brayden failed the car seat test. He was unable to breath properly for the whole 90 minutes. We would have to stay another night and try again in the morning.

The little bit of composure I had regained was gone. I was so emotionally, physically, and mentally drained that all that remained now was hopelessness.

The nightmare was not over; I didn’t think it would ever be over. No matter how hard I tried I couldn’t wake up from this horrible dream. All I wanted to do was take my baby home, but I wasn’t sure if that was ever going to happen.

The next morning the nurse came to try the car seat test again. I was not hopeful. This time we stayed in the room with Brayden. Eric nervously watched the clock while I watched the monitors, waiting for them to beep in alarm when his oxygen levels dropped. They never beeped. The nurse came back smiling and told us she was getting our discharge papers ready.

I felt the hopelessness slowly start to melt away, but I was cautious not to get to eager. I didn’t think I could handle having the chance to go home dangled in my face only to get ripped away yet again.

It wasn’t until we were physically out of the hospital and in the car that the tears started again. Only this time they were tears of relief. We may have gotten off to a rocky start and nothing went like I had pictured but we were finally able to drive off into the sunset and start our new life as a happy, healthy family.

Being in the NICU was a life changing experience. It was very hard to "get over" to be honest I don't know if I will ever "get over" it. Not just because of what happened with Brayden. In fact I feel very blessed because Brayden is a healthy boy and has no kind of health problems asscoiated with being born in respiratory distress. All it is now is just a bad memory that we had to move past. The reason I say it was life changing is because of the other babies that were in the NICU. To be honest Brayden was probably in the best condition of all the babies there. Any of the other familes would have loved to been in our shoes.  All the babies there were so sick and some of them had been there for months. I could hardly survive 9 days..just try to imagine months. Even worse is some of those babies never get to go home. I will never foget seeing those tiny babies lying in hospital beds struggling for their lives. It just doesn't seem fair. March for Babies is a way we can do something about it. A way for us to reach out and help all of those babies and their familes. Please join me by making a donation or signing up to walk with me and maybe someday we can live in a world where all babies are born healthy.  Go to http://www.marchforbabies.org/ to join the cause. My team name is Team Fagley.