World Down Syndrome Day

If you had asked me exactly one year ago, I wouldn't have had a clue about the significance of 3-21 on the calendar. This day last year I had no idea that a little miracle was forming inside me. And while the amazing process of a life being formed was happening, something no one ever expects happened to the tiny life inside me. She received an extra copy of her 21st chromosome. 

I've researched more than I could have ever imagined about the significance of that one extra chromosome. To some, it's unthinkable. Punishable by death. My heart breaks for those people that will never meet their child because they just couldn't bare the thought of having a child like mine. 

I've wondered for several months about what we would do today. Would we have a party? Release balloons? Do something special and significant? 

Here's what we did... We had a completely normal day that any other family with a "typical" 4 month old would have.

 We shopped, we lunched, we played, we stopped for strangers to ooh and ahhh over our beautiful baby girl. We had tummy time and laughed so hard at the adorable and giggly girl that Hannah Belle has become. Not once did I look at her and think about Down syndrome. 

To me, this was the best way to spend this day. Hannah is a lot of things to me...miraculous, beautiful, life changing. 

But one very important thing I want the world to know about Hannah Belle is that she's also just an ordinary baby. 

Happy World Down Syndrome Day Hannah Belle. 

Two months old...

Today was Hannah's first Valentine's Day. To celebrate, we partnered with our sweet friends, the Balkaran family to make Valentines for the guests staying at the Ronald McDonald House. This morning, we took Hannah and Paisley to deliver Valentines at each guest's door. It was so special to return to the place that took such good care of Mike and I just a few weeks ago. Then, we spent the rest of  the afternoon surprising Daddy and Paw-Paw with Valentines at work.

It was a beautiful day and I couldn't help but think how this time last year I didn't even know I would be pregnant with Hannah. Life is full of surprises!

I can't believe how much I've experienced in just one short year. Last year was full of tears, fears, smiles, prayers, rejoicing, and miracles. Looking back I can honestly say it was the hardest and most amazing year of my life. I wouldn't trade a single second of it for what I have now. Hannah is so precious to me and my family. We fall more in love with her everyday. Her smiles and coos are just good for the soul.

When you receive a diagnosis like Down syndrome, you have no idea what to expect. I spent so many nights lying in bed (not sleeping) wondering what Hannah would look like, what her health would be like, how would we manage. I read EVERY book about Down syndrome that I could get my hands on. If only I had known. Hannah is a perfect baby. She's so calm and sweet. She's so healthy. She's so beautiful. She's everything I never knew I wanted. And I sleep just fine at night now.


Who knows what tomorrow will bring for our family. Most of you know, Jake's health is still very much a concern. Our prayers are that the doctors will lead us in the right direction. He's had a rough year too. He deals with things on a daily basis that most people won't experience in a lifetime. Please continue to pray for Jake.


Thank you for your constant support and prayers for our family. Life is good. Life is so good. We found out today that there will be another little girl added to our family this summer. My brother and his beautiful wife are expecting a sweet girl. I am so excited to think these precious girls will have each other to grow up with.


God has carried us through the storm and continues to bless us and provide in ways we couldn't have imagined. We are so grateful... so, so, grateful for our family and friends.
Happy Valentine's Day!

One month old

On Hannah's last day in the NICU she was given a hearing test. She failed the test in her left ear. For the last month I've prepared myself for Hannah to be deaf in one ear. I've tried to not feel defeated by the news because I know that compared to all Hannah's struggles, loss of hearing wouldn't be the worst news. However, I have found myself constantly thinking about it over the last few weeks and continuously making noises in her ear and "testing" her myself. Once again my fears were in vain.

Hannah traveled back to the hospital today to meet with an audiologist at Arnold Palmer Hospital. The appointment was pretty easy. I had to hold her while they hooked a few wires to her head and placed devices in her ear. Hannah slept through the entire process. At the end of the test the doctor looked at me and said, "I have good news and I have even better news." As tears fell down my face I listened to the doctor explain that not only does Hannah hear in BOTH ears, she has better than average hearing in both ears. Praise God!

Once again Hannah continues to amaze me. It seems as though she easily jumps every hurdle placed in front of her. All the while she continues to be the perfect baby. She hardly ever cries or fusses about anything. My mom said it best when she said, "It is like God just clipped her wings and sent her to us." She is our perfect angel.

Two weeks old

We continue to fall more in love with Hannah everyday. She is such a good baby. Our only struggle is keeping her awake long enough to eat! Hannah's pediatrician is thrilled with her progress. I find myself just staring at her, still unable to believe she is here. I absolutely LOVE being home with Hannah and Paisley everyday and am already dreading my return to work in March. Not because I hate my job as a teacher, but because my dream job is to be a stay at home momma.

 

 

We are home!

We were discharged from the hospital yesterday afternoon. We are thrilled to be home with our family. This is going to be the most special Thanksgiving for all of us. Hannah has an appointment today with our pediatrician. We will update as soon as we can! Thank you all for your love and support. 

4 days old...

Hannah is doing so much better. We believe the concerns about her heart and digestion are no longer concerns at this point. She's had a rough first 4 days of life. Our girl has been poked and prodded  and kept away from her parents more than any child should ever be. Despite everything, she continues to fight and heal.

Right now she is battling jaundice. She lives on top of a bilirubin blanket and has to wear dark glasses over her eyes for most of the day. We are praying that tomorrow's test shows the jaundice has gotten better. We believe if the jaundice goes away that the doctors will consider letting us take her home.

Mike and I visit her most of the day and night. We've been staying at the Ronald McDonald house for the last few nights. They've been amazing and I can't imagine how we would have done it without this place. It has been a blessing to remain so close to Hannah, but we are ready to be home. We miss our kids terribly. We've only seen Jake once in the last week, and I can't even put into words what it feels like to be away from Paisley this long. She visits us everyday but it is not the same. I miss rocking her and sleeping next to her every night. I never imagined I would ever have to be away from my girl for this long. My only comfort is knowing she is in the loving care of my mom and dad.

Please continue to pray that Hannah will be home for Thanksgiving. I continue to thank God everyday for this amazing angel He has given us. We can't wait to get her home and have our family back together again.

I'd be lying if I said this week hasn't been a struggle. In fact, I would say this has been the hardest week of my life. I have a new respect and spot in my heart for any mother and father that has ever had to hand over their newborn baby to the arms of the NICU. I can not imagine going through this without Mike, my family, and the loving support of our friends. I am overwhelmed by everyone's love, concern, and support. I pray that I will have very good news to report soon.

Hannah update...

Hannah's first 3 days of life have been very different than what we expected. It has been a roller coaster of emotions since the night of her birth. I don't know why this surprises me though. Has ANYTHING about Miss Hannah been predictable? I should have known she had more in store for us!

Hannah was admitted into the NICU early Friday morning. Our hearts were broken because she had started off doing so well. There were concerns about the amount of work the right side of her heart was doing. She was also having trouble regulating her own body temperature.

After her first feeding in the NICU, the doctor noticed her belly to be a little swollen. X-rays of her stomach showed gas not passing through her digestive system. The doctor then explained this could be a sign of a disease called Hirschsprung's Disease. They also decided to stop her feedings and start an IV for nutrition. Throughout the night Hannah's digestion improved and this morning they allowed me to start nursing again.

Mike and I were discharged from the hospital today. We tried everything we could do to try and stay but nothing worked. Leaving our baby at the hospital is not something that is easy for either of us. We've been given a room at the Ronald McDonald house for now. It isn't too far from the hospital and we'll be visiting Hannah every 2 hours tonight to try and get her on a strong feeding schedule.

We really have no idea when Hannah will be allowed to go home. We've come to learn the NICU is a constant cycle of forward then backward steps. It's not an easy place to be, but we know we must remain positive and continue to be patient. The NICU is a heartbreaking place and it doesn't take long to look and find a family that would trade places with you in a second. Our girl is probably one of the healthiest babies there.

Please continue to pray for Hannah and her momma and daddy. We are having a hard time being away from our baby. We continue to pray for God's strength and healing for Hannah. We would love to have her home for Thanksgiving.

Thank you, thank you, thank you for every gift, phone call, text, and sweet post on Facebook. There is no way we could possibly respond to everyone right now but please know we hear you and appreciate you so much. Our days are a whirlwind of meetings with nurses, doctors, and specialists in between visits with Hannah. I never knew time could fly so fast. With the love and support from our family we are taking things one day at a time.

So many of you asked about visiting Hannah. Please know that once Hannah gets home we will be thrilled to have visitors.

I will try to update as much as possible. Xoxo