Note From Rachel and Random Updates

Rachel was getting jealous of me blogging and so she decided she wanted to try this "blogging stuff" out. Here's what she had to say...... df , wtrrtt 45x5,t, x uk uk uk hiimiukh8jb v v n fn f b.

I think she was trying out her math skills and then her geography skills and a little foreign language? I don't know, but she was happy with how it turned out! Below are some pictures of her in her crib playing. She didn't realize I had the camera in the second pic. Whoops!

I've introduced solids to Rachel over the last two weeks. She really likes eating new things and does well with the spoon but, unfortunately, her little tummy doesn't agree. The peas and sweet potatoes gave her diarrhea. I've been told to wait a couple days and try again with a more bland food, like carrots, and see what happens. The nurse said it could be her stomach just getting used to the new foods. I don't know. I have a feeling her stomach will react the same way with the carrots and then I'll be on the phone with the pediatrician's office again.

Tuesday, we have a long day at Brenner's. Rachel has a follow-up appointment with hearing and speech at Brenner's (hearing will be tested again) and she also has an appointment with the ENT there. I am so happy. There is something going on that is keeping her from sleeping well and sleeping in a C position. We used to think it was all reflux but we are noticing more that even when she sleeps in a more upright position on our chests she stops breathing and then kind of snort/gasps for air. It sounds like something gets stuck and she can't breath. I just want her to be able to sleep comfortably. I'm also concerned about her breathing because every once in a while, he legs turn blue. I have told the pediatrician about it and they say that this too is pretty normal but, again, I don't by it. If it continues I will let them know. The first thing that comes to my mind is heart problems but as far as we know, her heart is fine.

Thursday is another big day. We are seeing the geneticist from the hospital again. He was the one who talked to us about Rachel right after we came to Brenner's. I am really not sure why we need to see him again. I guess he just wants to make sure we are OK with Rachel having Down syndrome and that we aren't depressed by it. We have an appointment with a GI doctor in July at Brenner's. I wasn't thrilled with our GI doc here in Greensboro but Stephen really didn't like him. She had her Barium swallow test done two weeks ago but we haven't heard anything about it yet. Rachel is back on Prevacid twice a day because it's the only thing that works right now and her current GI doc isn't giving us many options.

On to cheerier news...The last couple of days it's been pretty hot here and Rachel has been enjoying her pool. She has a friend, Jonas, that she sees on a pretty regular basis and he came to enjoy it as well.

Jonas

Both love Magic Sprinkles!

Rachel has also been working really hard in therapy and on her tummy. She has gotten so good at rolling from back to tummy. She actually prefers to be on her stomach now. She is going about 3 hours between naps (or needing naps since it's rare when I can actually get her to take one!) and is going 3 hours between feedings. Every day our girls gets bigger and more active. She's just too darn cute for words and I have such a hard time paring down pictures of her!

Meeting More New Friends!

Rachel and I got invited to a play date with some new people. We had a small photo shoot and a little play time. We had a really good time (except for that scratchy grass!) and can't wait to do it again!

Spinal Muscular Atrophy

Stephen and I recently decided to get a whole battery of testing done on our genes. Even though Rachel having Down syndrome was not a result of a hereditary thing, we wanted to make sure there wasn't anything else we needed to be prepared for when we start trying for another baby. I found out that I carry the SMA gene. This is something that I wasn't prepared to know. No one in my family, either side, has even had this from what I know. Stephen then needed to be tested for it to see if he was a carrier too. If he was a carrier, our next child had a 1 in 4 chance of having this disorder. SCARY. But, thankfully, he does not have it. Our next child and Rachel, now just run the risk of being carriers. Something I have to remember so I can tell them when, or if, they decide to have children. I also told my brother and the rest of my family so they know it's floating around in our gene pool somewhere and that they may want to test for it when it comes time for them to have babies. Has anyone ever known of someone who has this disorder?

Big Trip Home to PA

From April 28th until May 3rd, Rachel and I went back home to PA to visit family and friends. Rachel had a lot of "firsts" on this trip. It was her first trip on an airplane. She did fantastic. All in all, we spent on average 7 hours traveling to and from our destinations and she didn't complain once. Ok, she complained once, but it was only because I wasn't fast enough with the food. She fell asleep on the airplane some times. Other times she was awake and playing. Other passengers couldn't help but comment on what a good little girl she was....because she was! I know they were shocked that she didn't end up screaming the whole time. Rachel sure showed them!

While home, we met up with some of my old high school friends and their babies for the first time. Their babies, Brooke and Lydia, were born in December. Rachel and the girls were only supposed to be born a couple weeks apart so they are about the same age gestationally. Again, we had another big hit with that one. They loved to stare at each other and try and grab each other's toes, faces and bibs. Rachel loves to look at other babies.

Brooke

Lydia

We also got to visit a lot of family members. Rachel saw her grandma and grandpa Cooklis, Great grandparents and some cousins. She also won over her grandpa C's dog, Butter.

We found out how much Rachel loves grass. As soon as she touches her feet to it she gets so excited. When I put her down to sit in it, she reaches for it and pulls at it. Her therapist is thrilled because sometimes babies with DS have sensitivity issues to new feelings, like grass.

But the biggest first of all was Rachel went from back to tummy for the first time on the 30th. My mom and I were the witness to the event and it was so exciting! Rachel panicked halfway through because she was stuck but she got her leg over and made it to her tummy! Since then she has done it at least once a day more. Of course, I don't have a picture of that though.

Choosing Thomas and Eliot

Since Rachel's birth, we've been told many times that we won the lottery when it comes to genetic disorders. And while I now see that is true, at the time of her birth nothing felt that way. I've since been drawn to the other genetic disorders, to find out more about them. Trisomy 13 ( Patau syndrome) and Trisomy 18 (Edward Syndrome) are the other two more common. When your child is diagnosed with Trisomy 21 (Down syndrome) many doctors only give you the option of termination, ending the pregnancy. Usually, when you find out your baby has Down syndrome, you are already in your second trimester, you've seen the heartbeat, you've see arms and legs and movement. I would think, the thought of purposely killing your child, one who looks so normal on the ultrasound screen, wouldn't even cross your mind. But it happens every day. With syndromes like Edward and Patau, most babies do not survive. The parents are told that they may not even make it to their delivery date alive. What would you do in this situation? You have, by this time, seen your baby on the ultrasound screen, moving and kicking and heart beating. Do you choose to terminate? Because, what you've heard from the doctors is this baby will only know suffering and pain. Or do you choose to continue? To give life, or as much of a life, to this baby inside you? I want to believe that I would choose the later. Here are two stories, from two sets of parents, who chose to continue with their pregnancy, their firstborn. Please let me know your thoughts....
Choosing Thomas
99 Balloons

A Picture Too Perfect Not To Share...

Dexter and Rachel...

had another playdate! This time we enjoyed some lunch followed by a stroll in the park. Afterwards, we went back to Dexter's house and they "played."

Pointing out the fine details on her cardigan...

This time instead of trying to sneak a kiss, Rachel went for a hand-hold. :)

To All Soon-to-be First Time Moms...

Planning. Seems like the second you find out you are pregnant, you start planning. Is it a girl? Is it a boy? What colors for the nursery? What kind of crib? Will you breast feed or use formula? You even set out to make a "birth plan." You know, just how will you have that baby. In water? Drugs? No drugs? Music in the background while you meditate? You like to kid yourself that when the baby comes, you will stop this planning nonsense. Guess what, you will stop planning because you can't plan. NOTHING ever goes the way you would like it. In fact, don't even make a birth plan. It's ok to say you are going to try to go natural. It's ok to say that you want the epidural. But don't even think that it has to go that way because more than likely it will not. You may want to breast feed and find out you aren't cut out for it because the baby takes up every second of your time and you can't even sleep for more than two hours without having to feed him. You may think you are going to get an epidural but then your labor comes so quickly you find yourself in the car on the way to the hospital with no time to spare. Your baby may not like the swing you got. You may hate having the bassinet in your room. You may find yourself going "Why in the world do I have 3 bags of cotton balls? What was the purpose of these things again?" A baby doesn't care what your plans are. Go ahead and throw that script out the window.


Worry. While pregnant you will worry constantly about the baby inside you. You will fret over the foods you eat or don't eat. You will take prenatals religiously. You will freak out if you haven't felt the baby move in over an hour. This is normal. But it never goes away. In fact, I think worrying gets worse after the baby arrives because then you know what you could possibly lose. You are going look at that little face sleeping in your arms and tears are going to stream down your face at even the slightest sad thought. You think your hormones are bad now, crying during a commercial or song, wait until your baby is born. It's like every song is made just for them and every movie has some special meaning in it directed towards them. Driving becomes a hazard because a Celine Dion song comes on, you look in the review at the baby and the tears start. "You're my life's one miracle, everything I've done that's good. And you break my heart with tenderness and I confess it's true, I never knew a love like this till you." *Whaaaaaaah!* You will feel like a mess constantly from now until forever. It never stops but it's something you would never change.

Sleep. Everyone always likes to point out that "you should enjoy your sleep now because you'll never sleep once the baby comes!" Yeah, yeah. We all know that babies wake up a lot. That they don't sleep long periods of time. If you didn't know that, then why are you having a child. You should probably do some reading first on the subject. But I digress...I would like to point out that usually (and I say usually because, again, you can't plan anything) babies start to string sleep together longer by the third month. They start to realize that nighttime is for sleeping and daytime is for playing and smiling at mama and daddy. The first couple of months are horrible. I will not say that they are not, but do know there is light at the end of the tunnel and you will get sleep again. And try not to punch anyone in the face who decides to point out you won't be getting sleep.

Things. You may be all excited about registering for your baby gifts. You may be terrified at the thought of doing it. Going to Babies R Us is a nightmare for the new parent. THEY. HAVE. EVERYTHING. Going in to the bottle section is frightening. Where do you start? And what makes it worse is they give you a book with a list a mile long of "stuff you have to get. Stuff you won't live without." You need netting for your stroller to keep the bugs away from your baby. You need a wipe warmer so the little bundle of joy won't be scarred by the feeling of a cold one. Please. Half of the stuff on there you don't need. Or you don't need right now. Words of advice from me on this...go register then have a couple close friends who just had babies look at your list and tell you if you need that swing with all the bells and whistles or if you can save a few bucks on one that just swings. And read the reviews. Make sure what you're buying works for most people. You do not want to get your baby bath home, fill it up and have it leak all over (like ours does). Also, you really don't have to put clothes, blankets, bibs or hats on your registry. People love to buy that stuff and you really don't have to ask for it.

The baby. If you were anything like me, you may not be a "baby person." I wasn't even sure I wanted kids. But I kept hearing, "It's different when they are your own." I wanted to think that this was just something people say so the family line continues. But guess what, it's true. It's so very, very true. Just wait, because in X amount of months, weeks, days, your life is going to be 100 times better than it was and no lack of sleep, money or sanity will keep you from feeling it. :)

Rachel's Favorite Thing...

is to roll. She does it all the time now...


My favorite thing...is her. She is grabbing on to my ear in this picture. :)

A Beautiful Easter Day and The Pool!

Sunday, Rachel and I spent the day together like we do most weekends since Stephen works We got all decked out in our "Sunday" best and went to Church with a friend. Rachel looked around for about a half hour then slept through the whole service (yes!). Afterwards, it was home for a quick change and then we met another friend for a walk in the park. It was a hot day out but Rachel didn't mind.

Today, we set up a little blow-up pool. Rachel's first big time in the pool! She actually didn't hate it and I expect as time goes on she will love it. Watch it here!

Play Date with Mack and Wilson

Friday, Rachel had a play date with Mack and Wilson. Mack was in the NICU before and after Rachel and they even shared a room for a little while. His mom and I had many talks and even some tears during those days. It was wonderful to see them all together, outside of the NICU and I finally got to meet Wilson. Happy times were had by all...even some naps were taken!

Rachel relaxing in the shade...beware the rolls!

Mack checking out Rachel in her pretty dress.

Mr. Mack enjoying life outside of the NICU. :)

Mr. Wilson thinking a nap sounds good....