Saturday, October 31, 2015

Something Better Than Halloween for Me

I've never been a big fan of Halloween. Even as a child I never got into it. I went trick or treating and when I had my kids I dressed them up and took them out. We decorate and carve pumpkins but I seriously could do without it all. Now, thanks to Em October 31st has a whole new meaning....

When Em was born on Oct 22nd she was fine. Healthy and pink and good to go, but something happened a few hours after she was born. She was born at exactly 5 o'clock pm. Number 5 at 5 . Yeah, I was watching the clock while in labor!  Anyway, at 11pm I sent her back to the nursery so I could sleep a bit. She was feed and swaddled and content. At 2 am a nurse came in to tell me as gently as she could that Em was taken to the PICU. She wasn't breathing properly.

 She had no more info and I couldn't go down until 4 or 5am . I can't remember the exact time, but I remember I had to wait quite a while not knowing what the hell was going on. There was no sense calling home as everyone was sleeping and there was nothing Peter could do. I figured it would be better to let him sleep than to be up worrying and not be able to come to see Em.

As I sat in my room, watching each minute go by, I remember being extremely calm. I was waiting for the panic to overwhelm me but it never did. I just calmly waited thinking all the time that after everything we'd been through there's no way we could possibly lose her now. And if it was(God forbid ) a life threatening situation they would never leave me sitting here.

Finally, I was allowed to see her. Let me tell you, walking into the PICU was one of the hardest things I've ever done. It takes your breath away to see babies in such extreme medical conditions. The lowdown on my Em was that she basically needed to take a deep breath to open up her lungs. She wasn't taking in enough oxygen on her own thus most likely causing her to turn a pretty shade of blue in the nursery and alerting the nurses that she had an issue. Compared to the other sweet babes in the PICU she was fine!! It was just going to be a matter of time until she figured out this breathing thing on her own and once she did she would be free to go.

So, she rested comfortably with the help of O2 and then a feeding tube was put in because she decided to boycott eating. That didn't last very long, maybe a day or two and  then she realized the bottle was a lot better than the tube.

The hardest part was leaving her there after I was discharged. Leaving the hospital empty handed was painful, even though I knew she was ok.  Riding home with an empty car seat, and sleeping at night with an empty crib was very difficult.

Unfortunately, I didn't have the option of staying with her. I had 4 other little ones at home who needed me. Peter and I split shifts at the hospital sitting and holding and loving on Em while the others held down the fort at home. I got used to the bells and whistles that were constantly going off on monitors, but  I will never get the image of a  baby coding out of my mind. The rush of doctors and nurses, the orders being shouted, the absolute synchronized way the entire team flows together around the tiniest of humans all working together to bring him back. There were days when I walked in and saw the empty bed, that just the night before held a baby no bigger than my two hands.  My heart breaking for the parents left without their baby .I actually felt guilty for having such a healthy baby. That sounds stupid but if you sit there and see what people are going through, hear the conversations between doctors and parents, and hear their cries, you'll understand. I remember, one day searching the PICU for a certain baby. I wanted so desperately to see that they just moved him to a different bay. But he was gone. I sat there holding Em trying so hard not to cry.  Meanwhile ,friends cooked and helped out at home with the kids. I could never have done it without them. We are so blessed with friends that have become our family.

Nine days later she was breathing and eating like a trooper. It was Halloween.

They wrapped her up , and I was finally able to dress her in her going home outfit, the nurses gave Em an orange and black hat and off we went.

She's never looked back. Em was extremely lucky to be born with very mild health issues that cleared up on their own. She had a small hole in her heart which has since closed. And a right bundle blockage which basically has dumbfounded the doctors. It's an irregular heartbeat that can't be treated but has no repercussions. People usually get them when there has been some trauma to the heart like a heart attack or surgery. Em being born with it is odd, but hey, Down syndrome is known for throwing curve balls.  Her doctor had a great way of explaining it me. He compared it to an electrical problem in your home. All the light bulbs in your house work when you flip the switch except the one in your closet. That one takes a second to come on. You probably won't even notice the delay. So her little heart is good and so is the rest of her.

Have a wonderful night tonight! I hope you get tons of candy, enjoy your parties and win best costume contests! 

I will be with my littlest love, remembering how lucky we were 7 years ago tonight to be able to bring her home, healthy and happy. 

1 comment:

Anonymous said...

Hey there... I'm a long time lurker on your blog. I am a complete stranger to you and your family, but I want you to know that you have changed the way I look at Downs children. You write beautifully, and your love shines through clearly. Thanks!