This is Reese's world... we're just livin in it

So I feel like my baby already has an attitude... Sometimes she looks at me or other people like, "ok, I'm cute...and your point is?" People around us are constantly laughing at the "very serious" faces she's making. However, if you get her first thing in the morning, you can get a huge smile from her... which is the ONLY thing that makes getting up at 4:30am fun. Reesie is a woman of many faces and emotions...

Exhibit A:

This is my "I'm in a good mood and love Houston" face

Exhibit B:

This is my "I'm...too sexy for my hat..." face

...and...Exhibit C:

 

 

 

..the "Lady, I am NOT a pumpkin!" face

Insert random change of subject here:

We had Reesie's first appointment with the Early Childhood Intervention specialists last week. I was looking forward to it from the moment I found out the state provides the services. I tried to not get too terribly excited.. I didn't want to be one of those moms who's in denial and thinks their kid is doing WAY better than everyone else's kid... when really they're doing the same thing. I prepared myself for them to tell me she was behind; and I almost expected it.... because that's what a lot of things you hear and read lead you to believe. "Oh babies with down syndrome are such and such behind, and this many months behind, and they don't do this until then..." Well let me tell you something, after her appointment, I will never doubt my Reesie baby again. They came over to Zach's mom's house since she's been watching her. We want anyone who's in contact with Reese to be aware of the different things we need to be working on with her so she gets as much stimulation as possible. After we went through all the intro questions and paperwork, her therapist started moving her around. Grabbing her little arms, pulling her up and checking her neck strength, putting her on her tummy time, etc. From the first minute she started saying how great Reese was doing. My heart started swelling with pride... but I kept it hidden, I felt like if I started gushing about it, I would cry with happiness. I was bound to get through one thing with this kid and NOT cry! Many kids with small disabilities have to go through a tough assessment to see if they qualify for the services, but babies with a down syndrome diagnosis are automatically qualified for them. She told us if Reese didn't have the diagnosis, she wouldn't even qualify for them because she is such a SUPERSTAR... Did you hear that, MY KID is a SUPERSTAR! Dang... I said I wasn't going to boast.... Ok, I just have to... I mean, she's already making refrigerator art for crying out loud! ;-)

Baby Love

I was reading through a few blogs the other day and I came across one that really caught my attention. The writer was describing that feeling you get when you look at your baby, and your whole body aches because you love them so much. That feeling you get when you just start crying and it's for nothing but pure joy. She called it a "baby love" moment. Every day since I've called Reese, Baby Love. It's the perfect way to describe her. When I look at her and see those baby blue's staring back up at me, all I can think, hear, feel, or see is love. I've quickly learned those are the moments us women are put on earth for....the reason for our entire existence.

It's safe to say I cry about 3 times a day. I am a 26 year old woman and all I have to do is see one big old mouth full of gums smile... and I lose it. It's easy to think when you're going through something awful, "God, what did I ever do wrong to deserve this?"... and I'm not going to lie, I thought that... but not for long. Now, when I look at that fuzzy little head, fat little cheeks, long eyelashes, tiny fingers and toes... I think, "God, what did I ever do so right to deserve this??" I thought when we found out about Reese's down syndrome was the darkest day of my life... but now looking back, it was the defining moment of my life. She defines me as a mother, friend, daughter, and wife. My whole approach to life and living this life has changed. I can't stand when people use the excuse, "I'm this way and I'm never going to change..", because let me tell you something buddy, PEOPLE CHANGE every day. As a girl, when someone walks into a room, I instinctively judge them from head to toe.... not now. Who cares what that person is wearing.. I have no clue what that person went through that day and what led them to their decision. They could have just found out their 1 week old baby has down syndrome... I have a different compassion for people than I did before. I'm not saying I was a bad person before, because I believe I've always been a fairly good person... I just feel much more at peace with myself and others than I ever have before. It's not that I want everyone to have a child with a disability, but I see now why everyone tells you how lucky you are and how blessed you are when you do. It has opened my eyes to a much more beautiful and loving world.... all because of Baby Love.


I've received an overwhelming response to this blog, and I couldn't be happier. I feel like this has been God's calling for my little family. We have so many family, friends, and even complete strangers who have reached out to us, telling us it has changed the way they feel and think and will continue to love their own families. I've had people tell me they've taken their lives and their kids lives & health for granted, and from today on, they wont any more. Reese will grow up knowing her specialness has impacted so many lives and families....all because she joined this world. Just wanted to thank all of our family and friends for the support you've shown us through these past 3 months.

Why does the hole in her heart feel like it's in mine?

Back when we were still in the hospital, one of the nurses on our 2nd to last day there came in to check Reese's heart rate and said she thought she heard a murmur. Since this was before her DS diagnosis, they didn't link the two (since 1 out of every 2 babies with DS are born with some sort of heart defect) and put in for Reese to have an Echocardiogram. (learn more about an Echo here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004320/)

I didn't stress too much because the nurse and pediatrician assured me that babies are born with these all the time and they normally heal on their own. When the results came back, the on call pediatrician came in to go over them. She told me the murmur was very small, it should close within 2 months, and I really had nothing to worry about. This is also the same on call pediatrician who told me Reese may have Turner's syndrome, so it was no surprise when we had our second appointment with Dr. Vadala (the same day we received her DS diagnosis) and he explained that the hole wasn't as small as we had been told. He referred us to a cardiologist with Texas Children's and scheduled us an appointment as soon as possible to get their own Echo done. One week later we went to SugarLand to have her new Echo and chest x-rays done. The cardiologist there was awesome; she was so sweet and tried to give us the results without sugar coating them. She pulled out a tablet of paper that has a picture of a heart on it... I guess that's how they draw what's going on in your baby's heart and make it as clear as possible for us "non medical people" to understand. She started scratching out little sections and drew little holes in a few places. With every stroke of her pencil, I felt like she was drawing the holes in my heart. I kept my composure and didn't cry... I tried to keep as positive as possible because she hadn't said out loud if it was kind of bad, or really bad, yet. She explained that Reese has a Ventricular Septal Defect (VSD-http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002089/) and an Atrial Septal Defect (ASD-http://kidshealth.org/parent/medical/heart/asd.html).

Finding out Reese had Down Syndrome was one devastating blow... but you knew that it was something that she would LIVE with. Finding out your baby has tiny holes in her heart is a different kind of blow... because this means heart surgery, which means someone is going to cut your baby's chest open and operate on their tiny little heart, which (to an upset mother) means they may not LIVE. The doctor explained there is a chance for the holes to grow up on their own...but if they don't, then she'd have to have open heart surgery when she was 6 months old.

I know everyone keeps saying, "God only gives you what you can handle"... and I get what you're saying... but I have to disagree. A person can only handle so much, and I absolutely can NOT handle the thought of Reese's tiny heart being opened up. I believe God gives you what he knows will bring you to your knees and chose to turn your life over to him. That night I prayed harder than I've ever prayed before her heart will heal on it's own. You find yourself wishing it was you that had the defect. I would take all of it if Reese didn't have to have one ounce of pain.

The cardiologist referred us to the Texas Children's in The Woodlands so we wouldn't have to drive so far since we would be "regulars'' from here on out. We didn't get in with Dr. Wolfe (our new Cardiologist) for another two weeks. That appointment was very uplifting. He had a lot of optimism for Reese's heart. He said he can see the skin already starting to grow so he has faith that it will grow on it's own. He also lifted the "6 month old-heart surgery" rule and said as long as she's showing improvement, we wont do surgery....which I love the thought of. I also learned that among the 50% rate of babies with DS born with heart defects, a lot of them have very serious defects that require major surgery and that Reese's defect is on the mild side. Like I've said all along, we're very lucky and it could always be worse.

We had a follow up appointment last week with Dr. Wolfe. He walked in the room and said very happily, "somebody's getting fat!'' At this point in Reese's little life, any news that isn't bad news...is GREAT news. He explained baby's with these defects have a hard time eating and she is apparently NOT having this problem. She's grown a pound almost ever doctors visit we've had... I just love my little chunker. He also said the sound of the murmur in the stethoscope is getting louder which is good because if you think of a musical instrument, the smaller the hole, the  louder the sound will project.

So here we are today... just waiting and hoping to see if it will close on it's own. She takes a diuretic daily that decreases the amount of fluid in her lungs caused by the extra work her heart is having to do. It causes for some VERY full diapers, but I'll do whatever the doctor tells me to do if it means she may not have to have surgery.

Now that I've caught you all up on the past two months of Reese's life, I can start writing updates...hopefully they're all positive from here on out!... and if they aren't, then we'll get through them with a little help from our friends ;-)

Two of my fav's

Such a happy girl!

Sitting up like a big girl with mama