Some Days You Are Brave

I have always planned (well, since I knew she had Down syndrome) to speak out for Rachel. I have no shame in her having Down syndrome. I don't care if everyone knows she has it. I don't hide it. But, I've never said to a room of people, out loud, that my daughter has Down syndrome. Today at a Baby and Me yoga class we all sat around and had to introduce ourselves and our babies. As other people talked, I debated in my mind whether to even say anything. If I don't say it, will it seem like I'm ashamed of her? If I do say it, will that be all they see in her from now on? Person by person it got closer to my turn and I knew I had to decide. I decided to say, "Hi, I'm Maggie and this is Rachel. She was born 10 weeks early and we found out four days before that she has Down syndrome."  Wow, that felt good. I think that if people know she has Ds and they see who she is and what she can do maybe if they give birth to a child with Ds they will think of her and go, "Oh, this isn't going to be bad at all. I remember that girl from Yoga. She was cute and acted like any other baby." I want to save them at least some of the pain that I felt at hearing those words at the hospital. I didn't know anything about Ds. I never saw any babies with it before so I reacted the way I thought I should at hearing my daughter wasn't "perfect", I cried my eyes out and yelled at God. I think if I had been around another baby with Ds before she was born, I probably wouldn't have reacted as badly as I did. I'm only glad that I moved on from that grief stage quickly because it would have interfered with me being able to see the beautiful, goofy and strong willed girl I gave birth to.

Babbles, Teeth and Sitting

Over the 4th of July weekend two things happened. Rachel decided to actually start babbling consonants...babababa, dadadad, gagaga. Funny stuff! We have yet to really get a good string of them on video, but when we do it will be posted! It is so crazy to hear her say "words" and not just some sounds. Stephen already things she is calling his name: Dada.

Rachel also started teething. Hardcore. Before she liked to mouth her hands and she drooled a little but now, watch out, she will gnaw your fingers off if you get them near her mouth. She doesn't suck on her pacifier anymore either. She bites at it. I keep checking her mouth for any signs a tooth is poking through but I don't see anything right now. Ugh. Something better pop through soon because I don't want it to last months and months.

This Friday Rachel made a great effort at sitting. She hates to sit so the fact that she actually stayed in the seated position for more than 2 seconds was a major improvement. I am so excited! I can't wait until she can sit on her own...it will make bath time sooo much easier!

She got to use her pink bathrobe for the first time, Friday, after her bath. Isn't she just so cute? And because she is starting to be able to sit, I was able to get a picture of her doing it. Even if it's not the best "sit" it's still a new view of our girl!

I Tried to Just Post a Few Pictures...

But I couldn't decide on which ones. Really, I really tried to delete some but I just couldn't...and so, here is Rachel's First Fourth of July slideshow!

A Funny Thing Happens Once You Become a Parent

I was driving home from the Ds Mom's Night last Sunday and it was just me in the car. No Stephen. No Rachel. Just me. It's very rare when that happens now. I'm a pretty independent person. I relish my alone time. I need it in order to survive. Put me in a room with a bunch of people and I'll do quite well for a while but then The Wall hits me and I need to retreat. Ahhhh, do you hear that? It's quiet. The TV isn't on. Rachel is asleep. Stephen is out in the garage. Again, it's just me. Ahhhhhhh. On my drive home the other night, I was able to turn up my music, open the windows and sun roof and just drive. Drive, drive, drive! I felt like myself again. My old self.

That person never stayed in one place too long and was able to get up and do whatever she wanted whenever she wanted. I miss that person a lot sometimes. That "me" was a fun girl. Being a mom is tiring. I love it, but every once in a while The Wall hits me and I just feel that need to escape, to just leave for a bit and relax by myself, with my own thoughts, without worrying and always thinking one step ahead...."Ok, Rachel ate at 1 so that means she'll eat again at 4 and she needs a nap at 3 so I should leave here at 1:30 in order to get back in time for her nap. I also need to start the laundry and wash her bottles." BLAH! I don't know a lot of women who would come out and type this but I know a lot of women who know exactly what I am saying. Life just kind of comes along and crushes who you used to be in to a new mold...all the old pieces are still there but they have been turned in to something different. I know that I don't want my old life back, my life right now couldn't be better and it's all that I've ever asked for, but some nights when I'm driving alone in my car I get that feeling again, the feeling that I could take on the world. And maybe that's all I'm really missing...the naivety.

Play Groups

(our little monkey moving around in her crib)

Rachel and I hosted a play date at our house last Saturday. It was supposed to be held outside but it was already 80 degrees by the time it hit 10am. Instead, we moved the coffee table to the wall and put down a quilt in the center of the room. I think we had 9 moms and 10 children in our living room. It was a bit tight but it was fun. The babies in the group that came on Saturday range from 10 months to 2 months old. Unfortunately, Rachel was someplace in between the 2 month old and the 6 month old as far as her skills go. It's absolutely amazing how fast the "typical" kids develop. No wonder people say "enjoy them now, they grow up so fast!", because they do! These kids are already crawling around and standing and sitting easily. As much as I love this playgroup, I don't know how much longer we will be active participants of it. Very soon these babies will be moving much farther than Rachel and she will be left in their dust. It's a sad thought. She is my joy though. I told her the other day that her middle name should have been Joy instead of Jane. It fits her so much better.

(Rachel and my buddy, Jack)

Anyway, I was thinking about how sad it will be for Rachel not to have peers that are at her level anymore and I thought about starting a Ds playgroup here in town. I just didn't know how many babies were actually being born here. Then Sunday night I attended the Mom's Night Out which is hosted by the Greensboro Down syndrome group. We get together about once a month for dinner or tea or ice cream (which is what we did this night) to get out of the house and talk. It's a welcomed break for all, I think. This night three new babies attended! THREE! All boys, but it was so great to see them. Two of the moms are my age and their boys are their first child, just like Rachel. I felt like that was a sign to start the play group. So, I just need to pick a date and send out an invite with the help of the Greensboro Ds group coordinators. I know that all mothers want to feel normal. I want to have a "normal" life with my Rachel. I want play groups. I want "cutest baby" contests and sleep overs when she gets older. I want to participate in all things that parents of "normal" babies do. I also want a group where we can be ourselves and not worry about what other parents may think of our children and where they can play together on a matching level instead of worrying about milestones and ages. I really hope that other mom's will want to participate in this group. I think it will be a good thing.

It's getting easier to get her to smile for the camera!

And this is what happens when a baby outgrows her playmat...

The Rachel Video

My brother (the businessman) and my Sister-in-Law (the creative mind) have their own business. While they were here at the end of last month, they took some video of Rachel. It's been edited down and set to music. They did a FABULOUS job. I hope you enjoy it as much as we do. **don't forget to turn off my music before starting the video!

A Sunday with Rachel Jane from Moho Creative on Vimeo.

Another Round of Doctor Visits

We spent the day at Brenner Children's Hospital today. First up was the follow up with her Surgeon. Rachel was in a good mood and played peek-a-boo with her blankie. She had fun trying to kick it off too.

Then she crinkled the paper on the exam table.

And played with daddy.

Dr. P. said she looked great and to come back in another three months, when she turns a year old. If all is well after that, we never had to see him again! Yay! He is a great guy but I will be happy to cross him off her list of doctors she sees regularly.

We had a little wait in between appointments and Rachel got a nap in. It was needed. She was totally out in Stephen's arms for 45 minutes.

Our next appointment was an ultrasound on her kidneys. She had one done three months ago and the doctor just wanted to see how they were doing. Then we went out to the waiting room to wait for our next doctor's appointment.

We met with the doctor after the ultrasound. As we waited, Rachel played with the paper on the exam table again.

When the doctor came in, we were told Rachel's kidneys were growing fine and that both were just about the same size. One was smaller than the other last time. She also said that there were some bright areas on them and I guess that means damage but they think it's just old damage (from the TPN) and that it will continue to get better. They put a bag on her to collect some urine but it leaked and now we have a bag here at home in case the doctor really needs a sample. Fun. Heck, we've collected poo, why not round it all out with pee? She also had some blood taken and we will hear back about that tomorrow. The woman who took her blood is a PRO. She was able to not only find a vein in Rachel's chubby arm, she didn't even make Rachel cry when she put the needle in. It was the most amazing thing I think we have ever seen!

At the end of the day, we were all tired. Rachel sacked out in the back of the car and Stephen dozed next to me as I drove us home. I am thankful we don't have another day like that for another three months.

P.S. have you noticed her tilt-a-head is back? We aren't sure what that is about but I guess more stretching is in her future. I thought we had beat it!

Sleep Study Follow-Up

Rachel had her sleep study follow-up today. I was expecting the doctor to tell us nothing is wrong and that we are crazy. Ok, maybe he wouldn't say we were crazy. So, Dr. K. likes to talk. Stephen and I have a really hard time getting a word in edgewise. We think maybe he is afraid of forgetting what he wanted to say and won't let us say anything until he is ready. But, Rachel loved his voice and was mesmerized so she was calm and quiet the whole appointment.

Basically, as we thought, Rachel has apnea. Dr. K told us that, for an adult, having 1 apnea episode an hour is bad. Rachel has 4.(something) episodes an hour where she either stops breathing or is breathing too shallowly. He said that because she has Ds that he can't hold her to the normal chart. She would desat to about 83% occasionally as well, which is not good. I also think that if the sleep study was done at our house and she slept the way she usually does, they would have found it to be even worse than that. Unfortunately, there is nothing we can really do. Her tonsils and adenoids are a normal size. Most of the time when kids have apnea, their tonsils and adenoids are very large and once they take them out, the kids do much better. So, surgery is not an option. There is also CPAP. He said that it would be impossible to get her to keep it on during the night so that is not an option either. All we can do is keep an eye on Rachel to see if it gets worse. We are going to have to have another sleep study done on her in 6 months (Stephen's turn!). Dr. K. said that he doesn't think she is in any urgent medical danger.

He is happy we are seeing Dr. H, the GI doc at Brenner's, and said that he will hopefully help get her reflux under control and maybe then we will see more of an improvement in her sleeping issues. I am not sure if it will help or not. When we hold her on our chests to rock her, she stops breathing and constantly is moving to keep her airway clear. She ends up tilting her head back with her mouth open and we have to hold her head in our hand to keep her from falling over out of our laps. She never used to do this, this is something that has developed since the sleep study and it makes me nervous. I asked him about her sleeping on her stomach too since she has found out how to do that. I was concerned about the oxygen saturation levels and if sleeping on her stomach would make it worse and lead to SIDS. He said there was no medical proof that the low oxygen levels would lead to a SIDS death.

So, there you have it. We have proof something is wrong but no real solution for it at this moment. We just hope she does grow out of it. I hate the wait and see approach.

P.S. - Rachel is now 15 pounds!

First Father's Day

You were there from the moment she was born...protecting her, loving her.

She knew that you would be there for her no matter what happened.

You woke up for the nighttime feedings...
You cuddled with her during daytime naps.

You've been there every step of the way, cheering her on and believing in her.

I know that she feels how much you love her with every hug and kiss.

Thank you so much for being a great daddy to our girl. We love you.

Happy Father's Day from Rachel and Maggie

9 Months Old!

The days are flying by fast and our little girl isn't as little anymore either. She is showing her independence and strong will daily. Look out world, Rachel is 9 months old!