A Better Day

It took longer for Rachel to wake up from the anesthesia then the doctors thought and she was being lazy about breathing. She had been on the ventilator since Monday, so yesterday they finally decided to dial down her ventilator to force her to breath on her own and it worked. They were able to take the tube out tonight at 6PM! Rachel also had two poopy diapers today which is wonderful. That means her system is starting to work the way it should. The doctors expect to be able to do the dye test on Monday to make sure she doesn't have any leaks in her system. After that, she'll be able to start eating! Right now she weighs 5 pounds, 2 ounces. It won't be long until she is out of her preemie clothes.

In the picture above, Rachel has on her first Halloween outfit. It was given to us by someone in the NICU as a anonymous gift. The picture was taken before the ventilator tube came out when we were visiting her earlier afternoon...I'm sure she's MUCH cuter now.

Now the real test begins...

Rachel had her surgery today and she did really well. The doctor said that the operation went off without a hitch. They are going to keep her intubated and medicated through tomorrow to control her pain and to help her heal. After that, they will let her breath on her own. The doctors think that by Friday they will do a dye test to make sure that stuff will run through her stomach and intestines correctly. And hopefully, we will then be able to feed her through her mouth! That will be a huge step and test. She needs to be able to digest her food and pass stool before we can really celebrate. This week is going to pass by so slowly as we wait for Friday.

P.S. Her butt really isn't that low...just the diaper is! ;)

The Time Has Come!

Rachel is getting her surgery tomorrow! She is up in weight to 2062 and we are so excited. I haven't been able to see her in two days since I had my gallbladder removed on Saturday and I am so happy I'll be able to see her tonight. We are going to spend the night at a hotel close to the hospital so we can see her first thing tomorrow morning too. The doctors will be taking her about 8AM to prep for surgery. I will post more tomorrow after the surgery.

Rachel's Room

Just thought I'd post pictures of Rachel's room. It's basically done but the more time she is away from home, the more time I have to think about other things to do in it! Not a good thing! Haha!

One Month Old

Today Rachel is one month old! How fast that month has flown by. She is up to 1865 grams or 4 pounds, 1.78 ounces. She is also 17.5 inches which is a half inch more than her birth length. :) They are expecting her to reach her goal weight of 4 pounds, 6 ounces this week and I am hoping beyond hope that that happens. These pictures were taken today. In the one pic it seems like she is pondering about something!

Feelings.

Sometimes you try so hard to stay positive about stuff that all of the negative or sad feelings you have build up and decide one day to just all come out. I hit one of those days.

Wednesday night we met up with a couple for dinner. The guy has a sister with Down syndrome and they thought it would be worth meeting us to talk about Down syndrome. It ended up being a big mistake. The guy doesn't even get along with his sister. He talked of her like she was nothing to him. I don't think he said one positive thing about her. It left me feeling angry. Didn't he realize his words were supposed to help us? That I only needed to hear good things?

Also, I'm just not ready to think of my girl as having difficulty with anything. I am only able to think of her as my BABY. I am not able to read much information on Down syndrome, or think about her schooling, or other issues she may have, because right now she is perfect. She could be like any other baby girl. She could go to college. She could grow up and get married and have children. She could be a doctor. I guess I'm not ready to face reality at the moment but I know I will have to as she grows up. I just need time to adjust.

Yesterday, we also found out Rachel lost weight. She was so close to 4 pounds. I was so ready to hear the nurse say that she gained and hit 4 pounds. But instead we walk in to a 60 gram loss and the news that she needed a red blood cell transfusion. Another needle stick and wire to deal with. Awesome. I just lost it. Everything that has been going around in my head needed to come out and it came out in tears. Poor Stephen had no idea what was wrong with me.

I cried for her weight loss, for her future, for all the tubes and wires on her body, for the callous comments of the night before, for our future children and their increased chances of Down with every year we wait and selfishly, for myself. This new world I am living in wasn't what I thought of while going to sleep at night during my pregnancy. Some days I still wake up thinking this is all a dream, that I'll still have that normal birth and a baby to bring home right after. I am angry and I feel cheated out of Rachel's birth. I never got to hear her cry or hold her. There is part of me that grieves for that lost life. I hate how that sounds though and I am taking a chance putting those feelings out here because it sounds like I don't care about Rachel and that simply is not true. I am so happy that she is here and is our baby. I couldn't see our lives without her in it. Someday, I will be able to wake up in the morning, walk to her room and hold her without worrying about wires or hearing the constant beeping and dings from all the machines and that is what keeps me going.

More Good News

I went to see our little girl today and got some good information. She no longer needs the "pulse/ox" that was attached to her foot! One less wire! She also gained more weight and is at 1710 grams or about 3 pounds, 13 ounces. The nurse told me that if she keeps gaining weight at this rate, she will have her surgery in about 2 weeks. :) This is such great news! This means she has a chance of coming home in November for Thanksgiving.

1629 Grams

That is how much our little girl weighs!

Converted she weighs 3 pounds, 9.46 ounces. Whoohooo! So close to 4 pounds...what a little chubbers! Besides that, things are good. She is growing well, obviously, and Stephen and I are doing good too. Just wanted to post a small update for now. Keep praying for more weight gain!

2 Weeks Old...Or 32 Weeks, 2 Days

Today is Rachel's 2 week Birthday. She is continuing to do really well but only weighs 3 pounds. She needs to get to 4 pounds, 6 ounces in order to have her surgery. Every day I see her I tell her she needs to gain weight and prove everyone wrong about how long it's going to take her to do so. I know she is going to be the kind of girl who proves everyone wrong when they set limits on her or don't expect as much from her.

We have been doing a lot of Kangaroo Care (Skin to Skin). It's amazing how fast she settles down and her heart rate slows and her oxygen level goes as high as it can. We have also found the calming affect it has on us. For me especially, holding her makes me forget everything going on with my body. When I first had my c-section and I was in pain, I didn't feel it when I was holding her. When I got a rash from the surgical tape or from the medicine and my whole body itched, I didn't notice it when I was holding her. Time just goes by so fast staring at her little face. One minute it's 3 PM and the next it's 5 PM. I love the nosies she makes...the little sighs when she breaths, the sucking noises on her pacifier, even when she cries. She is also looking around more and keeping her eyes open longer. Yesterday she lifted her head from my chest a few times. Every little thing is a sign that she is getting stronger and getting closer to leaving the hospital. Every day it gets harder to leave her to come back to our house where she belongs.

Stephen and I celebrated our 3 year wedding anniversary on September 30th. He gave me a necklace with a mother and child figure embracing and Rachel's heartshaped Saphire birthstone hanging in the middle. We had a delicious dinner and talked about all that has happened this past year...with a lot of it happening this past September. Life continues to throw curve balls at us but we are able to work together against anything. I know I have someone in Stephen who will always be there for me. In him I have the vows we stated at our ceremony. I know he knows that he will always get the same from me. Life is so much easier knowing you have someone to help fight the battles with you and you don't even have to ask for their help. It makes celebrating the victories that much better.



**** On a side note, we just want to thank EVERYONE who has helped us out during this time. The cards, notes, emails, gifts, food, help around the house and with the dogs have been overwhelming but so needed and appreciated. You never really know how much you are cared for until you truly need it shown. We are very fortunate to have such wonderful family and friends. We can only hope that we can do the same for you when your time comes for support and help. Thank you.

Rachel's Song

The title of my blog comes from a song by Five for Fighting. I originally loved the song when I heard it while planning our wedding. To me it was the perfect Father-Daughter song for me and my dad. When I found out I was having a girl, I started listening to it every time I was in the car. I would sing it out loud hoping the little baby inside of me could hear me. I even listened to it as I drove myself to the hospital in a panic on that Sunday afternoon. That day seems so far away now. Listening to the song now always brings me to tears. It fits our situation more than I ever dreamed it would. From now on, this song will always be Rachel's song.

"I Just Love You"

by Five for Fighting

Lonely, yeah that's the word
I leave my heart when I leave her
The days go on forever and the nights do too

One evening out on the road
A half a world away from home
I thought she was sleeping
When the call came through

I said, Darling, it's late, is everything ok
Silence took over the room
Til she said

I... I just Love You
I Don't Know Why, I Just Do
When are you coming home
I'm coming home soon
And I just love you too

Lonely lets me be
For once she sets me free
I close my eyes and I dream of her

She's lost in my arms
Her head on my heart
And softly she whispers the words

I...I just Love You
I Don't Know Why, I Just Do
When are you coming home
I'm coming home soon
And I just love you too

I'll never stop being amazed
How my 4-year old girl knows exactly what to say

I, I just Love You
I Don't Know Why, I Just Do
When are you coming home
I'm coming home soon
Cause I just love you too