I owe it to her

Well HI! It's been forever! No seriously... like, a whole year has gone by since I've posted.

I just sat here and reread all of my posts (through some tears and laughter) and something is striking a nerve. The post where I told the story of finding out about Reese having DS makes me sad. Not sad, as in, I'm sad she has DS... but sad about some of the things I felt and said. To you, it looked as though I was this tough cookie who found out about her daughters diagnosis and is taking it with a grain of salt. To me, seeing things I said like, "this bad news", or "devastating blow" make me mad at myself. I understand I had every right to feel that way, I'm human. I guess it's just the "ignorance of the unknown" that made me say those things. In no way was it bad news. My doctor didn't tell me she had an incurable tumor, or that they were going to have to perform some rare surgery that day. He told me she had one more chromosome than everyone else. I remember thinking how calm he was and how he must have felt so bad to have to tell us that. Nope, he was calm as a cucumber because he knew we'd be A-ok. I love our doctor and Reese is his special little patient. The nurses love her and one even said, "maybe Dr. Vadala can give Reese her first job one day!" In no way was it a devastating blow. At the time it may have felt like it, but how could I think the term "devastating"? Of all the words to describe my feelings for my baby, and I chose "devastating?" What if Reese read this one day? What about when my other children read it? I don't want them to EVER think this was "bad news" or "devastating". They need to know they're the best things that ever happened to me and all of our struggles we may have are just what make us unique and special.

This leads me to believe I'm an emotional writer. In the beginning of this whole thing, I was so overly emotional and had so many different feelings going on, it helped me to write it all down and share it with you. I figured you guys didn't want to hear about our every day typical life, which is just that, typical. We wake up in the morning, get ready for work/babysitter, go to said work/babysitter, get home, have dinner, do our bed time routine, and go to bed just to do it all over again the next morning.

Now, having gone back and read the emotional times, I feel as though I owe it to other new moms to DS to keep writing. To keep telling stories about our life. To tell you just how normal our life is, so you, too can not think of finding out your baby has Down Syndrome as "bad news" or "devastating". So you can see how wonderful of a thing it is, and that everything is going to be ok. If this blog could reach at least one new mom and take away one ounce of the pain she's feeling, then it has served its purpose. I'm not saying everything is going to be rainbows and butterflies, but find a family who is. Sometimes, I will still get the tiniest little pain in my gut when I see something that reminds me Reese may be a little behind... but then I have amazing mommies who keep me in check and tell me things like, "Do you think Reese gives a sh*t about those other kids walking before her?"... (that really happened) and I die laughing and think, you're totally right! So really, not only do I owe this to other new mommies of angels like mine, but I owe it to her.

Happy World Down Syndrome Day 2012!!

Playing Catch Up

Remember when initially I told you how "I'm not a blogger...".... well, has my 2 month hiatus proven my point? I could tell you that I'm exhausted and have no time, but there are other mothers out there who find time.  I really need to designate a day every week to just sit down and catch everyone up on the life and times of the Helms family... Actually, who am I kidding, Zach and I are chopped liver... let me change that... catch everyone up on the life and times of Reesie :-)

For catching up sake, I'm going to do a brief summary with some pictures scattered in between... and I promise, I'll never go this long again ;-) Ha!

Oct. 22, 2011- Reese went to her first birthday party! It was a Pirate Party for her cousin Reagan's 3rd birthday. We had SO much fun. It was also the first time Zach and I hung out somewhere with her...so we were kind of learning our boundaries as well. (You can tell I was still a bit psycho--note the mosquito net)

Oct. 24, 2011- I started a new job! Most of you know my old job was 40 miles/ 1.5 hrs away from our house so it was killer. Going back to work was hard enough on me, but being that far and knowing that if I had to rush to pick Reese up would take me over an hour... I just couldn't do it. My new job is literally 15 minutes from our house... I feel so blessed to find something close to home!!!

Oct. 26, 2011- We had a check up at the cardiologist. They did a chest x-ray that showed her lungs as more clear and the size of her heart was decreasing... which is a GREAT thing! The heart is a muscle, so the harder it works, the larger it grows, so any decrease in size means it's not having to work as hard. Dr. Wolfe is still very optimistic that we won't have to do surgery... so please keep your prayers coming!

Oct. 29, 2011- Zach and I went to our friends Shawn & Vanessa's wedding so we dropped Reesie off at her Uncle Mikey and Aunt Tracy's house for the evening. They had fun getting to spend some time with their Reesie. They don't get to see her that often so it was a treat for Brody and Reagan to have her over... I think Reagan just likes a break away from all the boys ;-)

Nov. 7, 2011- Reese started day care... boo hoo!!! I cried and cried... which is normal I guess... It was so hard leaving her. Thank goodness for the people at Kids R Kids... I don't know what I'd do if I had to leave her with people I didn't know. I obsessively watch her on the camera's while I'm at work. When I use to work there, I'd think all the parents were so crazy who would call the center and say, "umm, why is my kids sock on the other side of the room?"... but now I get it...it's so funny to watch all the little babies hanging out on the mats together. Sometimes her Grammy will call me and ask if she can go kidnap her because she misses having her ;-)

Nov. 8, 2011- Reese started her RSV vaccine. Since she was born, RSV has been one of my biggest fears. There is a vaccine to prevent it, but your child has to qualify for it because it is $1,500 PER shot...and it's a monthly injection for 6 months... Normally, only preemie babies qualify for it because of their underdeveloped lungs, but due to our AWESOME cardiologist's letter of recommendation he wrote, the drug company and our insurance company approved Reese....for the cost of ZERO dollars!!! I almost cried!!!

Nov 13, 2011- Every November, we have a family reunion in Huntsville for my dad's side of the family. I absolutely love it. It's always the prettiest time of the year and I love being able to see my whole family! Last year, I was super excited because I walked in and all my aunts, great aunts, and all my girl cousins bombarded me to see my new engagement ring... but this year, they all bombarded me to steal Reese away...lol. It was hysterical to see them fight over her! "I'm feeding her", "NO, I'M feeding her", "NO, I get her first because I'm the grandma!" This kid will never lack confidence with everyone fighting over her! 

Gettin some lovin from my great papa!

Nov. 18-20, 2011- Reesie's first visit to the lake to visit Papo Lewter. The boys stayed at the lake while us girls stayed in a hotel in town. We had a blast! Watching Anna with Reese melts my heart and I love any opportunity I get to spend time with my amazing sister in law. Grammy and us stayed in Nachitoches, LA Friday night, then drove out to the lake on Saturday morning. Papo fried up his famous fish...which is DELICIOUS by the way! When it started to get dark, us girls left the stinky boys (seriously, they didn't shower all wknd) to go back into town. I don't know if you've ever been to Nachitoches during Christmas, but it is BEAUTIFUL! We put a blanket down and watched the fireworks. The kids absolutely loved it! It was so funny watching Reese because she was mesmerized. After that we went back to the hotel room where I didn't get much sleep because Kass was jumping up and down screaming at the tv as the Baylor Bears took down OU... Sic 'em! ;-)

Nov. 24, 2011- This was Reese's first Thanksgiving and it brought such a new meaning to the day. Zach and I are so thankful for the blessing of Reese and everything that she comes with; her whole little package. I would not trade that little girl for anything in this world. We're so thankful for our family who has been here for us through everything. We're so thankful for all of our friends who continue to keep us in their prayers and lift us up. We're so very thankful for the doctors who care for our sweet girl... I couldn't imagine not having TX Children's right here in our backyard. ...and hopefully I can speak for Zach also when I say how thankful I am for him and he is me. I wouldn't have my sweet pea if it weren't for him. We were the perfect combination to make an angel like Reese so there is no doubt in my mind we were meant to be together. 

Here are some extra pics from the past two months.

Watching the Texans with Daddy!

My sweet angel :-)

Now that I've caught you up...my fingers feel like they're going to fall off from all my typing! :-)

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

...and then my world stopped.

I've wanted to be a mom since I knew what being a mom was. I'm the oldest of 5 kids so my "nurturing" nature probably came mostly from being the big sister to my sweet younger siblings. I've always loved everyone for who they are and never turned my back on my family regardless of their choices or path in life. I know in my heart God made me this way...and I now know in my heart He made me this way for a reason. I just didn't know this reason until August 18th, 2011.

When Reese was born it was the absolute best day of our lives. To have a 7lb 12oz baby girl teach you unconditional love within 20 seconds is a little overwhelming...but that's honestly what happens when you hold that little baby for the first time. You look at them and just know that there is nothing in the world you could ever love more and there is absolutely nothing you wouldn't ever do for them.

On our second day in the hospital, the pediatrician who does the rounds at Memorial came into our room to do Reese's first evaluation. While checking her all over, she nonchalantly asked me, "does anyone else in your family have a thick neck like this?" Not thinking twice about it, I told her no. She, again, nonchalantly said, "oh, well sometimes it's indicative of a type of syndrome... normally Turner's Syndrome." Since she said it so passively, I didn't think much of it. I had never heard of Turner's  before so as soon as she left, Zach and I did what any person does in 2011 when they don't know what something is... we Google'd it. Zach read to me it's a type of syndrome that only affects girls and can be pretty bad. It causes them to have webbed skin down their neck, they are typically very short, and they never go through puberty. I was devastated... how could this lady say that to me, then just walk out. I told my ObGyn when she came to check on me and she said she honestly doubted that Reese had Turner's. It made me feel a lot better. When we were discharged from the hospital, we had to go to our pediatrician within the next day because of Reese's jaundice. When Dr. Vadala came in and was going over everything, he mentioned the fact that he wanted us to go back over to the hospital to have her blood drawn to do chromosome testing. That's when I felt sick... the pediatrician at the hospital obviously felt strongly enough about her remarks she made that she consulted our doctor to have this testing done. Zach and I left Texas Children's, and pulled back across the street to Memorial Hermann where we had just been for 4 days living blissfully happy with our baby. This time as we arrived, our attitudes were much different. I couldn't stop crying... even though there was no definite answer as to what was wrong yet, I just had this constant unsure feeling and worry for my sweet little girl. I prayed and prayed that God would make everything ok and give us good test results. They called us back to draw her blood and I lost it. Zach had to sit in the room at first without me because I was pacing up and down the halls bawling my eyes out. I realized I had to pull myself together and get in the room with them. I just held Reese's soft little body still as they poked all over her arms trying to get enough blood to do the testing. She barely cried... I bawled. There was a nice nurse outside our room who was trying to comfort me and said her daughter had to have chromosome testing done. I don't know why, but hearing other people saying they've been through the same awful things, always makes you feel better. It's not that you want it for them, but it's just easier knowing you're not the only one. We left the hospital knowing it was going to take a week for the results to come back.

The next week was the worst by far... it was quite possibly the longest 7 days of my life. I tried so hard to be strong every day and think positive. Even though she had hardly no symptoms for Turner's besides the swollen neck, I was never at peace the whole time we waited. I cried and cried every day. I would just hold her, look at her and think, "there is nothing wrong with her, why am I so upset? She's perfect."

I called the day the results were supposed to be in and all the nurse said was, "since you're coming in tomorrow, Dr. Vadala will just go over them with you then." I didn't know whether it was good news or bad news. I kept telling myself, "she didn't tell me because she's not allowed to do it over the phone whether its good or bad..." Something in my body just new it wasn't going to be good.We woke up the next morning and got ready. It was such a weird feeling.. I kept thinking, "ok, 3 more hours and we'll know...", "ok, 2 more hours and we'll know..." I just kept playing it in my head how it was going to go... how I'd react if he said yes or if he said no. If I'd cry, if I'd pass out. I honestly had no clue how it was going to be. When the nurse opened the door and called Reese's name, I thought, "ok, here we go, we're about to know and my nerves can settle down."

They directed us into our tiny room. They checked her length, weight, and all the normal things they do at a doctors appointment. I couldn't even be excited about the 1 whole pound she gained or the 1/2 an inch she had grown. Dr. Vadala came in the room and sat in his chair as Zach and I sat on the bench. I swear I don't think I even took a breath for the next 2 minutes. I just held Reese in my arms and kept kissing her little forehead. I saw the paper in the doctors hand and kept thinking, "ok, lets get this over with... does she or does she not have Turner's syndrome...." He scooted his chair closer to me... my throat tightened. He pointed to where it said 47 chromosomes (which to me at the time meant nothing)... my heart started racing. Then his finger traced down the page to the two most gut wrenching words I've ever read in my life, "Down Syndrome".... and then my world stopped.

"What? There's no way, what do you mean she has Down Syndrome??" I just couldn't believe it. It was so final... you think of every way possible to tell yourself there's no way it's true and there's something you can do about it... but then it hits you like a ton of bricks when you realize that there in fact is nothing you can do about it. The best way to describe it to people who haven't gone through this or anything similar can understand... is that it's almost like your perfect child you envisioned over the past 9 months passed away and you have a strangers baby. They say before you die your life flashes before your eyes... well when you get news like this, your childs life flashes before your eyes. Mere seconds had passed since Dr. Vadala told us the news and I had already pictured the wedding that would never be, the driver's license that would never be had, and the awful things kids do and say to babies like mine.

Dr. Vadala left the room so we could just be together. I wrapped my arm around Zach and held Reese in between us and let out a sob I'd never sobbed before. My husband... my sweet, sweet husband... He just held me and told me it was going to be ok. I'll never know the pain he felt that day, bless his heart for being so strong for me.

After we left, we called our parents to give them the news. They immediately met us at our house. When they got there we all just sat there and cried. We took turns holding our sweet angel. I text a few of my best friends to give them the news. It was so hard. Dr. Vadala only had to tell Zach and me... but I had to tell Reese's grandparents, aunts, uncles, and all of our best friends who love her so much. It was heartbreaking every time I had to tell someone and they didn't know what to say. I felt bad giving such bad news over and over again. To this day it amazes me the amount of love and support we were shown that day. Not that I didn't know already how much our little family was loved, but I really felt His arms holding us the entire time.

I went through so many different emotions over the next two weeks. I went through all of the grieving phases. I would be angry, happy, mad, then sad... just to wake up the next day and do it all over again. I was angry that my sweet little girls life had been stripped from her, just to turn around and think, "no, she has her life, and her life will be so blissfully happy and in her eyes, better than anyone else's life." I would be mad that all of these other people around me are having all of these healthy babies, just to turn around and think, "yeah, but mine is going to be the special baby who will protect all of her friends as they will protect her." ...and then I would get sad. I would get sad at the thought of Reese never getting to have babies. I would get sad that she would never get to drive a car.... and then... I would realize that she will never know the difference. She will have siblings who will give her nieces and nephews who she will love just like her own. Why would she need a car when she can just drive around with her mama? I get to live every mothers dream... my baby will live with me forever!

I went back and forth with crazy emotions until one day I found out that a dear friend of mine lost her newborn baby. It was that exact moment I decided I wouldn't be sad one more day for Reese or myself. I had my sweet baby there with me and I could hold her, hug, and kiss her...and that's all I needed. That little girl is our Angel and teaches us every day what unconditional love is. She has the biggest fan club I've ever seen. People call me every day to see how Reese is doing... I'm chopped liver these days ;-)

I don't want people to cry for us, or even to be sad. I want people to be happy that this has happened to our family. We are all going to be better people because of this little girl. The blessings and love she is going to bring us haven't even started to be realized yet. We need to thank God that He chose ALL OF US for her to be in our lives. I am so excited to start this journey with her. Any time I start to get upset, I just remind myself of how I felt before I knew and think again, "there is nothing wrong with her, why am I so upset? She's perfect."