31 for 21

I'm going to try really hard to do the 31 for 21 blog challenge this year!

It's posting every day for the month of October (31 days) for Down syndrome awareness (21 chromosomes). October is Down syndrome awareness month! I never thought I'd be so happy to celebrate October but I really am.

So, get ready! I might not make it every day but I'm certainly going to try.

September 26th

We just passed a very important anniversary. September 26th.

September 26th 2011 we woke up, got ready and headed off to the doctor to find out if our baby was a boy or a girl. I just knew it was a girl, Greg was convinced it was a boy.

I was right, baby was a girl! We knew her name would be Lauren since before she was born. We didn't expect to find out that she had Down syndrome. The tech was very quiet and then brought it the MFM (maternal fetal medicine aka high risk) doctor. As soon as he came in I started crying. He said, "The ultrasound findings show a few markers that make us concerned. We see a thickened nuchal fold,a shortened nasal bone, shortened long bones, a bright spot on the heart and a hole in the heart."

I immediately said, "You think our baby has Down syndrome." The complete shock I felt is indescribable. It felt like an out of body experience. When I think back to that day I still feel like I watched it happen rather than actually being a part of the conversation. It is the weirdest thing, I wish I had words for it.

I had recently graduated from nursing school and we learned about Down syndrome in school. I actually had an adorable patient with Down syndrome. Funny thing? I was pregnant with Lauren at that point and didn't know it yet. Feel free to think I'm crazy but I think God was preparing my heart.

The doctor said we would have the option of having an amniocentesis (obtaining a sample of amniotic fluid with a large needle and testing it for chromosomal anomalies) but that we would meet with a genetic counselor first. We could get FISH (don't know what that actually stands for, but it means rapid results) results in 48 hours and a full report in 10 days.

Then he said that with those results we could "make our decision". Wow. I understand presenting the option, I do. Studies have shown that the vast majority of women in that same situation would make the decision to terminate.

Greg and I looked at each other and then I very calmly replied "Termination is not an option for us and I don't want it brought up again." It wasn't.

I used Carrie's office to call my twin sister at work. A decision like having a huge needle go through my belly was not a decision I could make without her. As soon as she answered, she knew something was wrong. I was crying. I said, "Amanda, they think our baby has Down syndrome and they want to do an amnio. What am I supposed to do?" I couldn't have made it through those moments without her. Greg is my husband, my rock. But Amanda is literally the other half of me. We're identical twins. She told me that she loved Lauren more than anything in the world and she would support our decision to find out for sure and she would also support us if we decided to wait it out.

We called our parents on the way home. I felt so defeated that Greg had to literally support me when we walked to the car. It was one of the very few times I have seen my husband cry. I know he was trying to stay strong for me.

They said we certainly didn't have to have the amnio. Our chances of having a baby with Down syndrome once all of the ultrasound findings were applied was "Upwards of 80%". We were pretty confident that she would have it. But we needed to know for sure. So I had the procedure. We found out 2 days later for sure. But September 26th is the day I knew in my heart.

I wish I could go back to that day and hug myself. I wish I could've seen into the future and known how much our lives would change for the better. While I totally understand that all the feelings of grief, worry, despair, sadness and confusion are totally normal and even necessary, I still can't believe I was sad about Lauren.

My Lauren. I felt like I was grieving the Lauren I wasn't having and had to love a completely different baby.

I thought Ryan would resent her:

 

 

I worried that I wouldn't be able to connect with her:

 

 

 

Embarrassingly, I worried that she wouldn't be pretty:

 

 

Or happy:

 

 

Or be able to play with toys:

 

 

I was afraid she wouldn't have a sense of humor:

 

 

I worried that Greg wouldn't bond with her:

 













 

I worried that she wouldn't be fashionable:

As you can see, I was worried for nothing. I was afraid of the unknown. I am so glad that I've had a year to look back and realize what a gift we've been given. I love my kids more than anything on this plant and I wouldn't change a single thing about either one of them.

Happy September everybody.

Our family pictures!

 

We are so so happy with how they turned out!

I have such an attractive family!

Another sneak peek of my three favorite people!

And one more of the cutest couple around...

See? Abbie is the BEST! If you live local and need pictures done you know who to call. www.a-lloyd-photography.com

Sad musings and a family photo!

I am in a funk lately and I don't like it.  I think part of it is because I'm so freaking tired from work, therapy, doctor's appointments, preschool and life.  Greg and I haven't had any time together with just the two of us lately so we haven't really been able to just talk and hang out. Even after the kids are in bed he has homework and/or I'm tired and go to bed. Or I'm working since I start at 7pm. Greg is working full time and taking 2 classes which means he's gone 3 evenings a week. We are both just so over worked.

Have I mentioned that what seems like all of my friends are pregnant? I am super excited for them all. I love babies! But I have to admit it makes me a little bit sad. Actually a lot sad. I won't get to feel the amazing feeling of a baby moving around in the womb again. I won't get to nurture and grow new life. And I'm sad. My pregnancy with Lauren was extremely stressful, obviously. I didn't feel a lot of joy, I was grieving, I was extremely worried and I was barely hanging on some days. I don't mean to make it seem like the only reason I want to experience pregnancy again is to get a do-over, though I suspect that's part of my problem. The plain truth is that I want another baby. Not tomorrow, not even next year and probably not even the year after that. Some day.

But Greg feels done. As in never ever wants to have a third baby. Some days I even agree with him. He hasn't sprung this on me, his mind hasn't recently changed, I haven't been misled. He's always only wanted to have two kids. And we are extremely blessed to have two perfect children. I've always wanted three. He wins because financially he's right. Two makes a lot more sense than three. And I think it's really important that having a child is a mutual decision. But I still get to  be sad. It's just hitting me more lately as Lauren gets bigger and grows out of her tiny little dresses and tiny little onesies and tiny little pants. I don't feel ready to pack those things away knowing I won't get them back out to use for my very own new baby.

Ugh, enough of that. I'm getting teary eyed writing it. Here's for the excting stuff!

We had family pictures taken today!!! Abbie did Lauren's newborn pictures so I knew our family pictures would turn out amazing. Abbie is a wonderful photographer and we are a good looking family- what could go wrong? Famous last words.... Ryan hates getting his picture taken! Today was no exception, LOL! Here's a sneak peek and I'll definitely post more when they're all done! Take a look at Abbie's website here: http://a-lloyd-photography.com/ She is so talented!!

MOPS, fall and future doctor's appointments

Well hello there! We are enjoying this beautiful Michigan fall weather here. I wish it could stay like this all year round. It's been in the 60's and sunny. My favorite! I was baby-free this morning as both kids had a sleepover with Greg's parents. My morning was quite relaxing! I called my sister (who lives 8 houses down) and we went for a walk through our beautiful neighborhood. She carried her sweet baby and I drank coffee. She says that my mom and I are the only people who drink coffee while going for a walk. Great minds think alike!

MOPS finally started back up this week! It was a long summer without it. MOPS is Mothers Of PreSchoolers. It is the best ever. We have around 100 women in our church's MOPS group this year! We meet every other week. There is a place to check in the kids so the moms can relax, chat and hear about God. Lauren gets to join me this year because the pediatrician doesn't want her in the nursery through RSV season. She is a wild animal now and was grabbing at everything, pulling my hair, giving kisses and of course being adorable. And distracting. Luckily my amazing mother in law works at the church and came and got her for a little bit! Ryan absolutely refuses to leave church after MOPS until we've seen her. He marches himself back to her office and of course knows right where she keeps the candy :) He wanted to stay with her all day and then spend the night so he was quite sad that we had to go home for a nap first. Adorable!

At MOPS someone mentioned that they were surprised to learn that Lauren had Down syndrome because she didn't "look like it". That wording doesn't offend me at all but the idea does surprise me! I think it's very obvious. Is it just because I know? I'm not sure. It kind of caught me off guard, we don't get the "Really?! Are you sure?!" comments as much now as when Lauren was a newborn. We get a lot more stares in public now and I can see the questions in peoples' eyes. I would always rather people ask although I realize it would probably offend a parent of a typical child to be asked.

That's something I've been thinking about lately. To us it's been much more obvious lately that she has Down syndrome. I thought it might bother me a little more than it does. It does a little bit to be completely honest. Every once in a while I'll look at her and wonder if that's all other people see. Can they see past Down syndrome and just see Lauren? I get a little sad about it sometimes. She is so much more than her chromosome count. I forget that she's small for her age until somebody acts surprised that she's 7 months old. She is doing so well for her that I forget to compare her to typical kids. Definitely not a bad thing!

She is doing so well with the things that her Early On teacher is teaching us about helping her sit up and helping improve her muscle tone. She will be getting Hip Helpers soon! They are like little spandex bike shorts sewn together in the middle. They'll help her hips to not froggy out so much. We're working on sitting up with minimal support. She can actually fit in her high chair now since we have it filled with foam.

She sees her helmet  doctor next week. Hopefully they can do something to make it not as big, it makes her head red where it rubs. We only make her wear the helmet at night for this reason. We could've gone back to have them adjust it and add more padding but it's only been 6 weeks. Her head does look a lot rounder already. It helps that she's become a tummy sleeper and she rarely lays or plays on her back. Honestly, we don't have time to make another trip to Ann Arbor when we have to go back anyways. Between preschool for Ryan, home visits for Lauren and doctor's appointments for Lauren- then adding in work for both Greg and myself....life is so busy here!

 It looks like (fingers crossed) that we don't have to go back after that appointment until her audiology appointment (for her hearing) on the 26th!! She'll see an ophthamologist for an eye evaluation at some point but we need a referral and approval from insurance first. I don't at all mind if Lauren needs glasses. I'm blind as a bat without mine! But I would love if we could hold off on them until after we're completely finished with her helmet therapy. I like to travel light and if I have to remember a bunch of stuff there is a 100% chance I will forget something. The same goes for hearing aides. I don't mind if she needs them but I would love if we can wait until after we're done with the helmet. And I hope that her ear canals are big enough. I've had one doctor say her ear canals are typical sized and one say they are very tiny! It seems to me that her hearing is perfectly fine for now. My mom said she noticed with me at a younger age than Lauren is now. I had moderate hearing loss as a kid. Luckily for me ear tubes helped a ton and I sat in the front at school. In hindsight I wish I would've had hearing aides even though I would've been embarrassed at the time. It would've been better to know what the heck was going on! Now my hearing is fine unless I'm sick and I'm really good at reading lips.

We're having family pictures done on Sunday!! I am SO excited!! Our photographer is extremely talented- she did Lauren's newborn shoot. I can't wait. I dreamed about getting pictures done of the four of us while Lauren was in the hospital. I worried we'd never get the chance to do this. And fall is my absolute favorite time of year!

Doesn't she look ready for a photo shoot??

Lauren's first home visit

Early intervention services through the school district (called Early On in our state) started yesterday for Lauren!!

At first I was concerned (and still am to be honest) because our program doesn't have separate PT/OT but a general teacher trained in both areas. I've heard that often times this brings a wide but shallow knowledge base.

This does not seem to be the case with Lauren's teacher!! Lisa is awesome and Lauren loves her. She is already helping us out a ton. She asked how feeding was going and I said it's hard to put Lauren in the high chair. She's so small that the top of the tray comes up to her eyebrows! She can't see what's up there, much less reach for anything. So we've been feeding her in her bouncy chair when she gets solids.

Lisa is going to bring foam next week so that Lauren will fit in her high chair!!! I've been kind of sad that Lauren couldn't sit in her high chair like most babies. I didn't really realize that accomodations could be made. I was thinking of how to get a smaller high chair!

Lisa also asked what I was most concerned with. Lauren is doing great with rolling, pivoting while on her belly, reaching for toys, babbling, and has even started scooting her self forward on her belly and getting her knees under her. But I feel like she won't learn to sit up until she's 10 years old at this rate! She's just not interested, she'd rather move around.

She showed us how to sit Lauren against the couch and put the Boppy pillow in front of her for support. Here's a picture:

 

Look at her! She's sitting there holding a toy! She even has a hand on her knee to steady herself. I never would've even thought to do this to help Lauren sit up. I asked about the Bumbo seat but apparently it encourages rounding of the pelvis and slouching instead of upright sitting.

 

I'm so excited for next Tuesday!! Lisa will come every Tuesday during the school year. Isn't that amazing? And it's through the school district, so we don't pay for it. I just feel like this is amazing. I never even knew a program like this existed until we had Lauren.

 

I am so excited about what we can learn in our Tuesday sessions. There's baby group as well on Tuesday mornings but siblings can't attend. I'm not getting a sitter every Tuesday morning. Playing with her big brother is group-like enough for right now!