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. 

Saturday, October 24, 2015

7 Years of Love, Laughs and Challenges: Thank You Emilia

Seven years ago my world was rocked by a 6lb 14 oz bundle of pinkness.

 But before that, my world was rocked by a diagnosis of Down syndrome. I don't want this post to be about that as I've written about it many times. But I do need to state that, I let that diagnosis almost destroy me. That was stupid. I was scared, I shouldn't have been. If you are dealing with a Ds diagnosis seek other mothers and families who have a child with Ds for support.  If I had done that the last five months of my pregnancy would have been a joy instead of a nightmare.  That said , on to what I really want to write about....

My Emilia!!!

On October 22nd my baby turned 7!

 I blinked, that's all it took for seven years to go by. I started this blog when she was 6 months old.  I was so amazed by her that I needed to share her with whoever wanted to read about our day to day lives, and loving to write, a blog made perfect sense. We'd get up early, me with my coffee, her with a bottle and I'd write.  One day when I'm gone the kids will have this. It's good to write things down. What the mind forgets, words will bring back to life.

So, my Sweet Em, here are a few things I want to say to you. One day you will be able to read them all by yourself.

First, my Sweet, thank you!!! Thank you for taking my fear and making me fearless! You have given me so  much more than I can ever give you. Every day you are a constant reminder that I can do more. I don't settle any more, I insist on pushing myself out of my comfort zone. You are faced with challenges every single day. Most people don't realize how hard you have to work at so many things. I remember when you were learning to climb stairs. Your PT and you battled it out. You wanted to do it your way, and she insisted you alternate your legs, the correct way. Oh my God you were so stubborn! Finally one day she took the gate off (that blocked the stairs), looked at me and said get rid of this.  My first instinct was to ask her if she was insane, but I listened. She put you at the top of the stairs, stood in front of you and down you went, all alone. I believe we celebrated with cake!

Thank you for teaching me that the "perfect" family isn't about anything I thought it was. Perfection is a messy home, a loud house, running children, insane schedules, constant noise. It's laughter and crying and even fighting.

 It's falling into bed and being asleep before your head touches the pillow, and getting up before the sun. It's taking a head count every few hours and hoping you come up with the same number; and if not, trying to remember who's missing and where the hell they are. It's chaos at all times and it's "perfect".

a very rare photo of all 6 kids together.

The first time you said Mama, was the greatest moment of all. I waited years longer than most moms to hear that word. It still brings me to tears to think about it. That sweet little voice of yours finally called out for me. My heart melted. That was a good day!

There was the day you learned to climb the rock wall at the playground. One day, that's how long that took. You were so happy with your accomplishment!

And now you are learning TKD. I know right?  So cool. Your axe kick is freaking amazing! It's your happiest place to be.

 You literally start shaking when you see the building. You're treated like a princess there and sometimes I have to walk away because I feel like I may cry. It makes me so happy to see how much joy a simple class (when taught by the right person/persons which we are blessed to have) can bring you. You are doing such a a good job at learning to be gentle with the other kids... We're all so proud of you.

You continue to teach us, guide us and make us stronger. Oh , there are days that you push us to our limits! You have mastered how to be the annoying little sister, and you definitely know what drives your mother insane. My stress level is higher, my alcohol consumption is up, and my social life is nearly dead but I wouldn't change a thing. You are magnificent Emila Faith and its and honor to be your mother.

You are loved Em, You are loved Fiercely