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!

Deconstruction of a Magazine

When you have a ton of fun in the pool...

you need a LONG nap!

(Rachel and Jonas zonked out)

More Family Fun

This weekend we had some visitors. My Aunt B and her husband, Karl, stopped over for the night on Friday on their way to the beach. We had some beers and grilled out. It was a nice time. Since Rachel was asleep by the time they got in to town, they only got to see Rachel very briefly the next morning before they left. And, of course, I didn't think to take a picture.

Sunday, my dad, Grandpa C paid us a visit. Well, more like paid Rachel a visit. We all know who he was here to see. She took some time to warm up to him again (like all people) but by today she was all smiles. She really likes to be tickled, oddly enough.

We have a lot of things coming up that I'll be posting about. We'd like to take a trip to the local pool and attend a play date on Friday. She has a PT appointment with our favorite PT, Lisa. Lisa hasn't seen Rachel in about three or so weeks so I can't wait for her to see Rachel and all the progress she has made. We have the sleep study follow up on the 22nd where we will find out the results, a follow up with her surgeon on the 24th and also on that day, a follow up ultrasound and meeting with the Nephrologist. Then another play date at our house and her nine month check up on the 28th. Can I tell you how excited I am for all these appointments?? I can't wait to show all these doctors how well she is doing and I can't wait to see how big she has grown. This month is going by so quickly. I'm already thinking about Rachel's First Birthday Party and that just seems unreal. How can it be coming so fast. Didn't I just have her?

Fantastic!

She still hates getting her picture taken

For Rachel, this last week has been one of amazing accomplishments (at least in my eyes). It seems like she grew up a months' worth right in front of my eyes: she's half out of her 6 month clothes and half in her 9 month clothes, she can hold and drink from her bottle for a little bit, she is eating solids and loves peas, carrots, green beans, pears and sweat potatoes, she even tries to grab the spoon and feed herself, she blows raspberries like they are going out of style, she figured out how to turn on to her stomach in her crib, she is getting her pudgy knees under her belly and is fighting to crawl, she loves to "swim", and sit and stand. Every second of the day I'm watching her and going " I can't believe she just did that!" One of her PT's came today to do a small evaluation and she was really impressed with Rachel and how far she has come. The PT commented to me that Rachel is "motivated." Yes, yes she is. Rachel doesn't want to sit still. She wants to move, she wants to see and she wants to try everything she can get her chubby little hands on. Putting a diaper on her is a wrestling match. I'm surprised I can get it on straight half the time. This little girl is everything I ever wanted in a child. If I could sum her up in one word it would be - spirited. I know that will come back to bite me as she gets older, but right now I'm thrilled.

Her uncle Mike and aunt Mer gave Rachel this learning table as her Baptism gift back in February. Just a couple days ago she realized that if she hit the keys she would get music. But she doesn't just continually hit the keys, she will strike once and wait with her hand in mid-air until the song is done playing and only then will she'll hit it again.

Ever since we brought Rachel home she has been fascinated with our entertainment system and center. Now that she knows she can move, she likes to roll herself over to it and kick buttons with her feet and as in these pictures, use a toy to hit the buttons.

Never thought I would be so excited to see our baby hit our electronics.

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!