Sleep Study and Thunderstorms

I can finally sit down and write about Rachel's sleep study!

First, we drove through a nasty thunder and lightening storm on our way to Winston-Salem. I swear there were bolts hitting left and right of us on the highway. The rain pounded down so loudly on the car roof and the streets in W-S were flooding. But, Rachel slept through it all. I guess she knew how little sleep we both would get so she was getting as much as she could in the car.

(at this time you are probably wondering where the pictures are)

Our appointment was at 8pm, which is well past Rachel's bedtime of 6pm. I had to go alone because they only had room for one parent. Rachel was still in an OK mood when we got there but as soon as the technician started messing with her head and putting sensors on it, she flipped. Oh man, I wish Stephen was there to take video or pictures or something because she was a sight. They use this putty stuff to attach the sensors to her head. It's almost like spackle. So picture her red in the face, screaming at the top of her lungs with tears in her eyes, snot coming out of her nose, failing backwards and rubbing this putty stuff all over both of us while I'm holding her as tight as I can so she doesn't fling herself out of my arms. Yes. That was fun.

(now you know why there are no pictures)

I think, all in all, she had eight sensors on her head, two on her chin, two on her chest and one on her back. They put a netted stocking on her head to keep the sensors in place. She also had a small nose tube that kept track of her breathing. Rachel looked like a beat up homeless person. And now, after all that, she was supposed to go to sleep. They set up two hospital beds side by side. I have never slept with Rachel before and I don't think I ever want to again. She is noisy and moves entirely too much (which is one of the reasons why we got the study done). My job, until 5am, was to make sure she didn't pull anything off her face. Nice. I think I got one hour of sleep. She likes to suck on her fingers to calm herself and every time she needed to do that she would rake down her face with her fingers and pull at the tube in her nose. Every. Time. And every time I had to stop her and hold her hands and keep the pacifier in her mouth instead. I was a glorified pacifier holder. At 5am the technician turns on the lights and politely tells us to get lost. We won't know the results of this test until the end of the month. A doctor has to review it. I"m not sure what they will find. It seemed like, to me, she never really got to sleep and so the test won't really show her issues. But who knows. If we ever have to do this again, it will be Stephen's turn to go with Rachel.

She Drinks Alone...

Besides being the cutest thing in shades, Rachel decided yesterday that she wanted to feed herself. I had an empty bottle on the coffee table and she was sitting on my lap facing it. All of a sudden, she reached out her arms towards it. So I brought it to her and she grabbed on and brought the nipple to her mouth! My jaw hit the floor. We've never practiced that before. So, I went and got a smaller bottle with some formula in it and got the video camera out. Here she is...our big girl!

Therapy Gadget

This is Rachel's new therapy gadget.....

she loves it because she can sit upright and bang things on the "tray."

Look at what a big girl she is!

This is her "I'm done!" face and skooch back.

Elton John Has Nothing On Her

More on Elton in a bit...but first, have your ever collected poop and put it in to a container? We've had to do just that. Our pediatrician ordered stool testing to be done on Rachel's poo because of the diarrhea she's had the last couple of weeks. We received three vials last week for her to fill. Yeah, we never realized how little Rachel actually poops until we had to fill up three vials. Of course, Rachel also likes to poo in the early morning hours so by the time we get to it, it's already mostly soaked in to the diaper. We got two vials full and turned in last week and the results came back ok. We turned in the last vial today. If all is well with that one, we will just chalk up the weird poo to her new formula and resume solids again (which I'm really excited to do, strangely). I'm thinking green beans...Rachel has really been in a wonderful mood this week. Going by that information, she must have been feeling pretty crappy for a couple of weeks in a row before she got really sick two weekends ago with her fever. She smiles and talks constantly. She moves like no ones business either. She will be sitting on my leg and all of a sudden take a dive forward like she can walk and fully expects to walk. She loves when we hold her belly down and swing her from side to side. This girl is a daredevil and is going to be TROUBLE when she figures our how to crawl or walk. And I'm going to say whatever comes first because I wouldn't put it past her to just walk and bypass crawling - it's soooo beneath her! Ha!

On to Elton John...

Yeah, these were the only sunglasses that I could find to fit her little head. They are a tad bit wide on her face but they fit and she really could care less about having them on. She never tried to yank them off. I figure she needs to get used to having something on her face because, let's be honest, her dad can't see without specs, her mom is basically blind and Rachel has Ds which throws everything in her favor for getting glasses in the future. I'm sorry Rachel, I swear we will get you glasses that look MUCH better than these! But still....you have to laugh at how cute she still is!

End of the Day Pictures

We had a follow-up with the GI in Greensboro today. He was oddly nicer to us (did he find out we were going to see someone else?) and agreed that putting her back on the Prevacid twice a day was fine if it was the only thing that worked. He also said that her diarrhea could be a result of the formula she is on. Because it is already partially digested, it could be just how her system is reacting to it. He didn't seem very concerned. I guess we'll just wait and see what the stool tests say and go from there.

Here are a couple pictures of Rachel before bedtime. She's a little sleepy head. :)

Poop, Reflux and Relatives

I'm really tired of both of them and I know Rachel is too. I think we are finally on a path to narrowing things down though as to what is causing her chronic diarrhea. We know it isn't Celiac. Her formula is gluten free. We stopped feeding her solids for the time being so we know it isn't those. (The diarrhea started the same time we started feeding her solids-three weeks ago). Her surgeon called us and told us the symptoms if her surgery was failing. He said before that if something was going to go wrong with her surgery it would be when we started solids. The symptoms he gave us do not sound like what is going on with her. So we can cross that off the list. We are going to give a stool sample to our pediatrician so they can test it for parasites and the what not. If that comes back clean (no pun intended) then we know that it's either food related (formula allergy issues) or something is going wrong inside her little tummy. I'm sure we'll start by changing formulas, again, for the hundredth time. UGH.

(got your glasses, mommy!)

We have an appointment with a new GI in July but that is such a long time away. I have to call this new doctor's office every day now to see if someone has canceled and if we can slide in. Please cross your fingers that we get in soon. Rachel's reflux is also barely under control. Today wasn't a very good day in that department. Lot's of arching and some crying. She's slowly eating less but who knows if it's because of the reflux or because she's just gotten through a growth spurt. The Prevacid and formula changes have really not done a whole lot, but then again, I would hate to see how she is without them! She is also still moaning at night. We've just turned off the monitor sound and have our door cracked so we can hear her if she really starts wailing. I don't like doing that but it's the only way we get any sleep. It's still amazing to me how, even though, she isn't feeling her best, she can still have the best little smile around.

(it looks like she wants to strangle me but it's still funny!)

Yesterday, my brother and his wife stopped by on their way back up to NYC from Charlotte. I don't get to see my brother very often and I'm really happy they stopped by. Rachel really liked seeing her Uncle Mike and Aunt Meredith too! We had a nice dinner outside with our friends. My brother marinated some steak and it was delicious! They took a ton of photos so I'll post them when I get them.

My favorite Rachel...

is a naked one! These were taken a day after she got over her latest sickness so she doesn't look her best. But, I still think she is the cutest "naked" baby ever!

Happy 8 Months My Sweet Pea!

14 pounds, 24 1/2 inches and a whole lot of attitude!

We love you!

You Down With ENT? Yeah, You Know Me!

Sorry, busting out my old rap skillz. Did I just give away my age? :)

Today was a big day at Brenner's. Rachel had her hearing tested and she did Ok. They explained that she is hearing high pitch levels fine but the mid-tones didn't seem as good. They said it could just be the wax in her ears and her tiny ear canals. The woman who gave Rachel the test also said that the most important sounds for her to hear are the high tones. She also tested to make sure Rachel's eardrums were moving and they were. So, for now, we don't worry and then go back in September for another check up. Hopefully, it's just wax and small ear canals for now and next time will be better.

(Rachel trying out the big girl chair)

We met with a new ENT as well. We took Rachel to an ENT in Greensboro a couple of months ago and he bascically told us she was fine. We sat on that for a couple months. I've always been concerned about her sleep. She is really restless and arches. Most recently she has been having short episodes where she stops breathing, coughs or snorts and then starts breathing again. She has always needed a ton of naps during the day to keep from being crabby and all this together has us thinking that her arching may not be from reflux like we thought. We think she sleeps that way because it's the best way for her to breath. So, we decided to get an appointment at Brenner Children's Hospital. (Man, do we love that place!) As we stood at the desk to sign in, an exam door opens and out comes Ben. He is a little boy with Down syndrome. At that moment I knew we had made a good decision. The new ENT, Dr. K, took all our concerns seriously. He did a quick scope of Rachel's nose and throat. He said everything looked normal. He then scheduled a sleep study to be done on Rachel. Thank you! I know we will learn some much needed information from this study. Either we find something wrong that we can help Rachel with or we find nothing and concentrate on the reflux. Can I tell you how happy this makes me? Finally a doctor who wants to help us and Rachel and not just blow us off as over paranoid first time parents.

(having fun with herself in the office mirror)

We then stopped by the NICU to say hello to some old friends. I am now kicking myself because I had my camera and I DID NOT GET A PHOTO OF THEM WITH HER! Argh! I guess we'll have to line something up next time. Maybe in September when she turns a year old. It was great seeing everyone and if you are reading this, I'm sorry she wasn't in a good mood. She had a long day and it was getting close to bed time. Jamie, I think Rachel remembered all the country music you made her listen to and that is why she cried when you talked to her. :)

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!