Saturday, April 26, 2014

Happy Birthday, Rosie!

One year ago tonight, Caleb drove me to the hospital to have a baby.

Here I am at 12:21AM on 4/27/2013, proudly showing off
the fact the my contractions were less than 3 minutes apart.
Rosalie joined us less than 10 hours later!

When I look at the picture above, all of the emotions from that night come rushing back.  The air felt like it was charged with an electric excitement.  After months of waiting, we were finally going to meet our sweet daughter.  We were ready.  Well... we were as ready as any new parents can be!

Caleb and I had no idea what Rosie's first year would bring.  We tried to prepare by reading books, articles, and blogs, but much would be unknown until Rosalie actually made her grand entrance.  Some of the things we learned were scary.  Long stays in the neonatal intensive care unit (NICU), open heart surgeries, gastrointestinal surgeries, difficulty feeding, etc.  Rather than letting ourselves get consumed with fear and trepidation, our strategy was to arm ourselves with knowledge, but then roll with the punches.  Thanks to this plan, we were able to thoroughly enjoy my pregnancy and at the same time, were prepared to deal with any issues that could arise upon her arrival.

Tonight, when I was putting Rosalie in her pajamas, I decided to tell her all of the ways she beat the odds presented to us in the books and articles we pored over before her birth.  I thought it would be fun to share with all of you as well!

Delayed Dental Eruption
While many children with Down syndrome only get their teeth between 1-2 years old, Rosalie's first tooth came in when she was around 9 months old.  She now has three!!!!

Low Muscle Tone
Yes, Rosie does have some low tone, but it is not nearly as bad as it could be.  In fact, she is now able to roll over, sit up, bear weight on her legs, etc!  While she hasn't started crawling or walking yet, that certainly does not mean that she isn't mobile!  She has become quite efficient at rolling and pivoting around on her belly to get where she wants to go.

Orthopedic Problems
Kiddos with Down syndrome can have a variety of orthopedic issues, such as hip dysplasia, scoliosis, etc.  Rosie did have some hip dysplasia when she was born, but a couple months of double diapering took care of it!

Gastrointestinal Problems
It's not uncommon for babies with Down syndrome to have serious problems with their gastrointestinal tracts.  Some children even require surgery in the first few days of life to correct these problems.  Luckily for us (depending on how you look at it) Rosalie pooped pretty soon after she was born, letting us know that her GI tract was just fine, thank you very much.  

Difficulty Eating
Due to low muscle tone, many newborns with Down syndrome have difficulty eating.  It's not rare for them to need feeding tubes.  We were very lucky in that Rosalie was a pretty good eater when she wasn't sleeping (which she did a lot).  I was even able to nurse her for the first few weeks of her life!  Our inability to continue had nothing to do with her low tone.

Hearing Problems
Although Rosalie failed her initial newborn hearing screen, she passed the follow-up!  Hearing problems are likely to develop over time, but we are going to stay on top of it with frequent hearing exams.

Infantile Spasms (Seizures)
While we had a brief bout of being worried that Rosie was having infantile spasms, she passed her EEG with flying colors!

Eye Problems
Okay, yes, Rosalie is farsighted and needs glasses (super cute pink glasses, might I add).  But would I consider this a problem?  The only problem is the increased time it takes me to run errands because of all the compliments she gets!

Heart Problems
Approximately half of all babies born with Down syndrome have heart defects.  Rosalie did have a few holes in her heart when she was born, but they have all closed except for a teeny one!  Tonight I told Rosie that before she was born, Caleb and I didn't know it, but we had holes in our hearts too.  Her arrival into our family successfully filled these holes and we are recovering well.  :)

  After telling my Rosebud about the obstacles she has overcome, I told her about all of the things the books and articles didn't tell us.  They didn't tell us was how much of an easygoing, delightful baby she would be.  The books didn't tell us how she would sleep through the night at 2 months old.  The articles didn't talk about how she would bring joy to everyone she would meet or how our families, friends, and communities would rally around her and celebrate her every accomplishment (big and small).  I wish the books and articles could have put into words how I would feel every time I look into her beautiful almond shaped eyes and how I wouldn't see Down syndrome, just my sweet daughter.

When we got Rosalie's diagnosis, I didn't think I had what it took to be the parent of a child with special needs.  Now, I can't imagine being a parent to anyone other than my Rosie Girl.  I am so thankful for being given the life I never knew I wanted.

Happy first birthday, sweet girl.