Feeling Good Again: Ellie's Health Update

Ellie was born with a heart and neck issue, and for the past 2 months I feel like I've been holding my breath hoping she's OK. Well this past week she had an MRI and cardiologist appt, and I'm happy to report that she's doing amazing (woooo hoooooo!!)

A little bit about her neck.. While Ellie was growing inside my belly, she was laying in an awkward position, with her head touching her back (see pic below.) At the time, my OB said it could be a neurological issue, an osteo issue (like she would eventually need a helmet) or it could be nothing at all. When I googled "hyperextended neck" the first thing that came up was a baby with Down syndrome. Even my friend from work found this info online and asked me if it could be DS. I immediately brushed it off since all of my prenatal testing never suggested DS (surprise mom!!)  Jesse says she's like an owl, which is fitting since that's the theme in her room :-P

The crazy position she likes to sleep in! I had to send this to her pediatrician to show him what I was talking about.

She has a really floppy head and it's taking her longer for her to get her neck strength and to hold her head up. She had an MRI last Wednesday to look at her neck and brain stem.  Her pediatrician mentioned hydrocephalus, talk about making this mommy worry! Her MRI results are in and her neck looks FINE! We are starting physical therapy this week to help with this, what a relief.

Then today she had an appointment with the cardiologist. He's one of the best around, so I felt really confident in him from the beginning. He's the same doc who detected her issues in utero.  So today they did an ultrasound of her heart... the issue has resolved itself, the PDA closed on it's own! There is "no follow-up needed" ah, we are so grateful!!

All dressed up to go to the big city for her heart appointment.

I was feeling a little "heavy" today, trying to not worry about Ellie's heart. What if she needs surgery...? I could feel my emotions in my throat and was dreading any bad news, like I was going to lose it any second. The number of appointments she has is already overwhelming. I just hope that now that her heart and her neck are "OK" that I can focus on loving my baby. I also got this in my email today and found it quite reassuring (it's from the Secret):

"When a big change occurs in your life it forces you to change direction. Sometimes the new path may not be easy, but you can be absolutely certain that there is magnificence for you on the new path. You can be absolutely certain that the new path contains things that you could not have experienced otherwise.

When we look back at a negative event that occurred in the past, we often see how in fact it transformed our life. We see how that event directed us toward a life that we would not change for anything."

Hi guys! 

I'm by no means saying Ellie's birth is a "negative event" but her diagnosis is definitely a new path that our life is on. I feel like I can breathe a little easier knowing that her lil' ticker is working and that her neck will get better with time. ❤

Robert Earl Keen - Feeling Good Again

The Girl of our Dreams

It was winter of 2008, our son was a year and a half and we were anxiously waiting to find out if he was going to have a new baby brother or sister in May. Shortly before the gender ultrasound I had a vivid dream about a little girl. I don't remember what was said but I knew she was my daughter. She was adorable, her hair in two pigtails and she was wearing little glasses. She also had Down syndrome. I woke up feeling uneasy about my dream. There's no way I'm going to share this with Jesse. The pregnancy was uneventful so far... This baby is fine, right?

We went in for the 20 week ultrasound. Jesse squeezed my hand as the wand slid over my big belly. "Do you want to know the gender?" "YES!" We reply in unison. We had been taking bets, he says boy and I know in my heart it's a girl. As the ultrasound tech gets a peek at the "potty shot" I knew immediately. "It's a boy!!" My husband actually blurted out "Yesssss!!!" And it bugged me. I thought for sure I was pregnant with a girl. This whole pregnancy was so different than my first. But I saw the little pee-pee on the screen, he was definitely a boy. My husband apologized and said "but I'm going to have two boys... Two! They will be buddies for life!" I was so excited too, the idea of pink, tutus and bows faded quickly and I was truly grateful. Two healthy boys, this is going to be awesome!

Then as the ultrasound went on I was chatting with our ultrasound tech. I mentioned how I couldn't imagine how hard it would be to be in her shoes when she finds problems on the ultrasound. She nodded her head in agreement and said "I need to go grab the doctor, and will be right back." You've got to be kidding me. I look at my husband and say "seriously? How can this be happening again?" And I burst into tears. Jesse and I lost our first baby and this was bringing back all of the pain and emotions we felt during that time. Lightning can't strike twice, it just can't.

When she came back the doctor came to my bedside and started to show us what they called "soft markers" on the ultrasound. "See this bright spot in his heart? It's an echogenic focus... And here in his bowel, that is a hyperechogenic bowel" Jesse and I were terrified, we could see it with our own two eyes! But what does it mean? The doctor explained that they were soft markers for Down syndrome. Oh my gosh, Down syndrome? My heart sank and I immediately thought of my dream. It's mothers instinct, he has Down syndrome, he has to! Why else would I have a dream about that particular diagnosis? I look at Jesse and the color was gone from his face. I'd never seen him look so scared.

We opted for the amniocentesis because we wanted to be prepared for what the future held. Jesse was on a work trip so my mom took me and helped me take care of Will. I stayed on the couch for a full 24 hours to be safe. The 3 day wait for the FISH (quick turn test) was the longest 3 days of my life. My OB called with the results, our baby boy has "typical chromosomes". I was so relieved and I immediately call Jess with the news. "Babe, he doesn't have it, but I have to tell you something".... "What??" He seemed concerned, so I told him about my dream. About this little girl who I knew was mine, with pigtails and glasses, and Down syndrome. He was silent.. "Honey?" And he says "I had the same dream." In his dream he was at a football game, standing on the sidelines watching the game. His daughter was next to him, and she had Down syndrome. He didn't want to tell me about his dream either because it scared him. He didn't want me to worry. We were confused as to why we would have the same exact dream, but 4 years later it would all make sense.

Christina Perri - A Thousand Years

Lucas John born in May 2009

Daddy and Luke

Mommy and Luke

My boys

Big brother holding "Woot" for the first time