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

Lucky

It was hard to believe a little over a week ago that things could get better. At the time of Rachel's diagnosis and her complicated birth, I was stretched thin. I didn't think things could be worse. I didn't know how I was going to be able to handle everything. But now, a week after her birth, I find myself realizing how lucky we really are. Sure Rachel has Down syndrome, but I don't see that now that she is here. All I see is her cute little face and fingers and toes. All I see are her eyes looking for me when she hears my voice. Down syndrome isn't her, it's just a small part, something in the background. For how little and premature she is, she is also pretty healthy. Yes, she has the abdominal issue and surgery ahead of her, but her heart is strong and her lungs are strong. Every nurse at the NICU tells me about how "active" she is...and by that they mean she screams her lungs off at night! This makes me laugh because nighttime was always her most active time in my stomach. Our little girl is a fighter!

Anytime I start to feel less than fortunate, just one visit to the NICU puts everything back into perspective. A couple of days ago one baby died. The whole family was there and they saw THEIR baby die. I had a very hard time taking their cries of sadness. I don't even want to imagine what losing a baby would be like. The little girl next to Rachel is also fighting for her life. She swallowed merconium when she was born which has also given her a heart condition. This baby's mother can't talk to her daughter, hold or touch her because when she does it sends the baby's heart into overdrive. Yesterday while I was visiting Rachel, that little girl stopped breathing 3 times. I was holding Rachel at the time and I could feel her little breaths on my chest and I cried. How lucky am I?

Genetics and Her Little Heart

Yesterday we met with the genetics counselor. He didn't tell us anything we didn't already know, like Rachel has Down syndrome, but he did tell us that the features of Down's she does have are very subtle. He also said that she was very cute. But we already knew that too! The doctors are going to do a blood test on her to determine the exact type of Down syndrome she has but that won't really change anything as far as the early intervention goes. We are going to try and give her the best head start we can as far as education, speech therapy and physical therapy.

She also had an echo cardiogram done of her heart since children with Down usually have heart problems as well. Thank God they didn't find anything major. They said all 4 chambers of her heart are working great. The only thing that they did find was a small hole between the bottom two chambers. It's called a ventricular septal defect (VSD) and is the most common defect in all the general population. For now they will just watch her to see if it causes her any problems but they don't think it will be an issue. So now we just focus on her gaining weight, getting the abdominal surgery, and getting her home.

I was able to hold Rachel again yesterday but this time it was skin to skin. The little peanut gave a fuss at first but as soon as she settled, got warm and heard my heart beat she was out for the count! I felt like such a first time mom. I was so afraid of hurting her that I didn't even want to move. Hopefully I will get over that and become more comfortable handling her before we bring her home. Stephen, on the other hand, is already a pro. He is hands-on with everything like taking her temp, changing her diaper and putting on clothes. I am lucky to have him as my husband!

The Waiting Game

Yesterday the doctors determined that Rachel does, in fact, has duodenal atresia (common for children with Down syndrome). That is when the first part of the small bowel has not developed properly and it is not open and cannot allow the passage of stomach contents. Even though with her it was not completely closed and she was still having a trickle flow through, she would not survive as she is without the surgery. The doctors at the Women's Hospital told us she would be transferred to Winston-Salem Brenner Children's Hospital where her surgery would take place and that we would be called when that would happen. I was discharged from the hospital around 12:30 pm and went home. No sooner did we walk through the door did the Women's Hospital call to tell us to come back because Rachel was being transferred. Talk about a hectic rush to get items and get back to the hospital!

Once we got there, they loaded Rachel up in to their ambulance and we made the trip to Winston. Brenner's is a part of Baptist Hospital there and it is HUGE! We felt like we were at an airport. The NICU is very nice though and everyone loved our girl. The doctor that is taking care of Rachel and her surgery told us that he wants Rachel to gain another pound before surgery since she is too small and her organs are too small. He wants her to have a better chance at success. But this means she will be there for another couple months and we have a 45 minute to an hour drive to see her. We've signed up for a room at the Ronald McDonald House and hope to use it during the week when Stephen doesn't work. I know it will be very hard for him to go 3 days at work and not see his little girl. (as a P.S. please donate to the Ronald McDonald House. We never knew what they did until we were thrown in to this and they provide a wonderful service for those with ill children and babies.)

One bright note though is that Brenner's encourages holding and skin to skin contact with your baby. We were able to hold her for a half hour each last night. Today we'll wear clothes we can open in the front so our baby can feel our skin against hers. She is such a miracle. We love when she opens up her eyes to look for us when she hears our voices and the little faces she makes. One day she will be able to come home with us and that is what keeps us going right now.

Rachel Jane

Rachel Jane was born at 30 weeks on Saturday, September 19, 2009 at 10:52 AM. She was 3 pounds, 6 ounces and 17 inches long with a head full of dark hair. She also had lost 1/3 of her blood because of a placental abruption and they needed to do chest compressions and two shots of epinephrine to bring her back to life. She received two blood transfusions that brought her little white body back to a healthy pink and within the day, she went from being on a ventilator to nose prongs to nothing at all helping her breath. She is a fighter and I knew that from the moment I first felt her in my stomach.
Each day she grows stronger and her personality is already showing. We were even able to hold her for a short time in our arms today and she opened her eyes to look at us when we talked to her. There was never a more wonderful feeling than that. Tomorrow she will receive some tests to confirm issues with her digestive system or to surprise us all once again with having nothing wrong to begin with. I will post again when more news is learned.

Complications

On Sunday, September 13, 2009, I went for a walk with our dogs and my neighbor. She is also pregnant and expecting a boy. We talked about everything that is needed for a baby and when we got back to our homes, I even showed her the things that we had ready for our little girl. After she left, I noticed that the Braxton Hicks contractions I had been feeling over the last couple of weeks were very constant and when I went to the bathroom there was some blood. I called my doctor and was told to rest and see if the contractions went away on their own. They didn't. I drove myself the 15 minutes to the hospital and the whole time praying in my head, pleading with God, crying to our baby, "please don't die, please stay with me."

Stephen left work and met me at the hospital. It took three shots of drugs to calm down my contractions. They did an exam and tried to see if my water had broken. They couldn't tell. I was admitted to the hospital antenatal area, a place where they try to stop your labor, and a sonogram was arranged for the next day.

Usually sonograms are fun and we look forward to them. This one was different. We were told our little girl, our perfect little girl who kicked and punched in my belly, had markers for Down syndrome. Down syndrome! Never in a million years had we expected to hear those words. It was so hard to listen to the doctor tell us about our baby's shorter limbs and stomach problems. I just wanted to go to sleep and never wake up. Stephen and I held each other and cried.

On Wednesday, the 16th, I had an amniocentesis done. This was to confirm that our baby had Down syndrome. On Thursday, my 30 week mark, we received the call. "Yes," said the specialist over the phone to Stephen, "it is positive, your baby has Down syndrome." I was laying in the bed watching Stephen's face when she said those words. I will never forget how his face crumpled as he heard them. We talked and cried some more. Our doctor was still positive that my water had not broken and that I would be able to go home on bed rest for the rest of the pregnancy. I wasn't ready to go home. I felt that there was still something wrong and I asked my doctor if I could stay at the hospital for the weekend. She agreed I could.

Thursday night, the 17th, I could tell things were changing. I had fluid leaking and I told the nurse that either I had lost complete control over my bladder or my water was indeed broken. The tests came back negative again. Friday, it increased and my doctor came in and did another exam. Finally the tests confirmed what I knew, my water was leaking. I was staying at the hospital until our baby was born. My doctor was aiming for 34 weeks. Our baby had different plans.

I started having regularly spaced contractions. At first they didn't hurt but as the day wore on, they became very painful and very close together. The doctor was able to see that I was 4-5 centimeters dilated and 90% effaced. I was admitted to Labor and Delivery and after a week of contractions, I gave in and got an epidural. We settled in for the night and my doctor checked me again. This time I was 6 centimeters dilated and 100% effaced. Our doctor wanted to wait until morning to see what happened.

Saturday, the 19th, I woke up and my doctor came to visit. She said my contractions had slowed down and she would be in later to check me again. If I hadn't changed, I would be sent back to antenatal to try and keep our baby in longer. About an hour later I realized that I couldn't hear her heartbeat on the monitor. I asked Stephen to check it to see if it was there. Her heartbeat was at 70 beats per minute...it should have been between 120 and 155. He ran and got the nurse and after that two more nurses ran in. They put me on oxygen and told me to turn on my side. My doctor appeared out of nowhere and broke my water the rest of the way. I was starting to panic but her heartbeat shot back up to normal. I guess the water bag was constricting her somehow. I had another exam and I was 9 centimeters. We tried to wait for my body to dilate the last centimeter but it wasn't happening quick enough. Every time I had a contraction, her heartbeat would drop dangerously low. It was time for an emergency C-section.

I have to say I pride myself on being a strong person, someone who doesn't panic in stressful situations, but being on that table and unable to see anything or hear my baby sent me reeling. Stephen was the rock that day. He told me everything they were doing, told me when he saw our little girl's dark hair, how they were working on her and how everything was going to be ok. I am thankful that he was able to take over that roll and help me get through it. I only got a glimpse of Rachel Jane in her incubator before they took her to the NICU. I could see her cute little nose and I would have given my life for her.

The Beginning

As with every story, ours has a beginning even if the beginning isn't where we thought it would be.

We had two miscarriages in the course of a year of trying for a baby and when I found out I was pregnant again in March of 2009, I was excited but cautious. Why get attached to a baby who may not make it? But the weeks rolled on. I had morning sickness the whole first trimester and it was horrible! I never thought that peanut butter or the smell of vanilla would make me throw up but sure enough they did. I even lost weight.

The second trimester was great by pregnancy standards. I gained weight and got round. We both could feel her move and kick in my tummy. We had an ultrasound done at 18 weeks for an anatomy screening and to find out who was being born. To our delight, we were having a girl. The anatomy screening showed nothing to be concerned about. We were finally able to relax and believe that this pregnancy, this little girl, would be ok. We were finally able to name her, decorate the nursery and dream about her.

At my 26 week appointment, the doctor told me I was "measuring big but it's nothing to be concerned about." The same thing happened at my 28 week appointment. "If you are still measuring big at your next appointment," said the doctor, "we will do an ultrasound to find out what is going on."

I never made it to that next appointment. And this is where I believe our story actually begins.