Trisomy 18

I've started writing this post a few times and I keep starting over. I want to do it justice because it's about a friend of mine and her situation means a lot to mean.

I have a friend, Allie, who is married to Ryan and has 2 beautiful kiddos. Allie is one of the nicest people I have ever met and I had the luxury of playing volleyball with her in high school and sitting next to her in Spanish class. Allie is pregnant with baby number 3, Juliet or Jules to be exact. Jules has been prenatally diagnosed with Trisomy 18.

That's Allie, and yes she is pregnant in this pic....and beautiful

Trisomy 18 does not occur because the parents have done anything wrong. As with Down syndrome, I can't stress this enough. Allie and Ryan were chosen to be Jules parents just as Andy and I were chosen to be Harper's and you the parents to your children. We (Allie, Ryan, Andy, and myself) are no "better" than anyone else. We were picked by a higher power and not because we are extra patient or kind.  Our kids need us and Jules especially needs her family.

Allie, Tate, Ryan, and Kynlee

More than a year ago, I was in Allie's position. We were told that Harper would have Down syndrome, AV Canal defect, and an 80% chance of being stillborn. The possibility that I wouldn't meet my baby alive shook me to my core. I couldn't be pregnant for 9 months and not meet my little girl alive. Allie and Ryan are facing that same possibility today..... half of babies born with Trisomy 18 do not survive past one week. Jules has medical issues that Allie and Ryan are already aware of and Allie has shared them on her blog that you can find here. I don't speak for Allie and I want you to read her story in her own words.

After a long night tonight, I rocked Harper to sleep and Jules popped into my head. Jules deserves a chance for her mama to rock her to sleep.  As I rocked H, she smiled. Like smiled with her entire body. My heart melted. I know she was smiling at me and because of me. I want Allie to feel that again. I want her kids to experience making Jules smile.  Tonight more than ever, I realized that I am beyond blessed that Harper is healthy and that she is my daughter. This last year has been a rocky road. We have finally hit a smooth and straight roadway and I plan on cruising for awhile. It's stories like Jules' that make you realize how great your own life, despite it not being perfect. My daughter had Down syndrome but she is my daughter and I get to rock her to sleep, make her laugh, and comfort her cries. I hope for the day that Allie can say that Jules is her daughter, who is alive, fighting and kicking the dickens out of Trisomy 18.

After the incredible amount of love, prayers, and support that we received after sharing Harper's birth story and after her OHS, I promised to pay it forward. Today is the day. Please take a minute and visit Allie's blog. Leave her a comment or send her an email. Let her know that I sent you and that you have added her to your prayer list. If you don't pray then cross your fingers in honor of the Lundeen family. Do what you believe in but please think of this family often. This is a chance to pay it forward to a family that needs us. Do it for Jules. Do it for Harper. Just do it. 

I remember that with each kick in my belly I knew I was one kick closer to meeting my baby. Let's hope Allie gets the same opportunity.

Swamped

Yep, it's me. I promise. I have had many twinges of guilt in the last month for not blogging more often but then I looked at my house and decided it was ok and that you would forgive me. Right? What if I bribe you with pics of Harper?

Besides the house we have been through a crazy couple weeks. Andy has been in Waco, Texas for the last week and a half. Normally, this isn't a big deal; however, Harper has begun teething. Cue the long nights, difficult time getting her to bed, and crabby fussy girl who doesn't like to eat. Yep, it's fun.


The house is coming along nicely. I'll have an entire post dedicated to before and afters. I'm getting my designer on and I'm loving it!

I guarantee some more substantial posts soon. There have been many things happening in the Ds community and I have to get caught up!

10 months

Happy 10 months to my baby! This week has been full of firsts. Selling a house, buying a house, but best of all...Harper is sitting by herself! This is a milestone I've been anxiously waiting for her to achieve! For most moms they get to watch their wee one sit much earlier than 10 months. To be honest, I'm perfectly ok with the fact that she Isn't crawling yet...I have too much to do in the new house to be chasing after a crawler. But sitting, sitting is awesome!

Here are a few pics from the week. I will have a more in depth post soon.

Happy Father's Day!

9 month milestones

I'm competitive. But I am a good sport. When I lose I know I gave it my all. When the doctors told me that Harper had heart issues, one of my first questions was "Will she be able to play sports?" There answer, "Yes of course." I want Harper to have a competitive spirit, maybe not as severe as mine, but I don't want her to settle. It's my job to teach her that. And it started this week.

I took Harper to her 9 month appointment with her pediatrician this week. I was given a milestone checklist upon check in (which I had no time to fill out in the waiting room because at 9 months, they prick H's finger for tests and then tell me that they no longer put band aids on children because they should swallow them. The lack of a band aid leaves me with a baby full of blood stains and my fingers as her gauze).

The checklist was miserable. I was to pick if Harper completed these milestones: All the time, Some of the time, or Never. Dude, seriously, the girl was born 3 1/2 weeks early, had OHS at 4 months, and has Down syndrome that is notorious for children having low muscle tone.

Does your child "walk" next to the couch? Nope, she can't sit up yet. Does your child crawl? Nope, she can't sit up yet. Does your child take steps unassisted? Nope, she can't sit up yet.

Thank goodness for Harper's reputation at the clinic as being adorable, cute, and heart melting. Because the nurse took the checklist from me and told me to not worry about it. Instead, she asked me questions that could answer in a positive tone, rather than selecting NEVER for all of their questions.

Even with my competitive spirit, I knew at that moment, that I can't make Harper competitive with other children regarding milestones. She has to be competitive with herself. We have to challenge her to reach her goals and the goals we help her set. Even though I wanted to cry during the checklist, I knew better. I know that Harper will reach all of these milestones...on her own time. But first, we need to help her sit up unassisted.

Watching Signing Times on the iPad

Sitting up. We are getting there. Our OT, Julia, has given us tips and tricks that we are using on a daily basis. Her struggle is that she forgets her thighs and booty are meant to help her balance. Harper loves her Bumbo chair with tray attached. Her new thing: throwing toys on the floor until we pick them up. Over. And over. And over again.

My competitive spirit is what will drive me crazy but it is what I need to use to help Harper thrive!

Thinks it is funny to throw her toys

Chaos

Photo dump

We are busy... But not to busy for pictures!

Hope everyone had a great weekend!

bringing in the new

I'm sorry for my short leave of absence but, boy, life just got in the way! Within the last 2 weeks we accepted an offer on our house and have an accepted offer on our future house. Inspections are done, the bank has been notified and now it's time to hire movers! Watch out June 25th here we come! 

In order for you to forgive me I know that this post has to be mostly pictures of Harper. So, hold on tight because you are getting a month's full of pictures in one post!