Saturday, December 1, 2012

Baby Lily is 1!!

Lillian Hope, you are a year old today. It does not seem like it has been a whole year since you came to us. I was terrified at how I would manage with 3 children and only 2 hands, but we have made it little girls, a whole year! Now you are taking steps, little Lily Hope, and I am just as amazed to watch you learn to walk as I was both your sisters! I love hearing her little voice as you make your first words. Although communication and eating have been your strong points since birth :) You have always known how to get whatever it is you want and how to get your point across. You are very particular about how you want things, but that is ok. Happy 1st birthday baby girl!!

Tuesday, October 30, 2012

Kylee is 7!!

It is the morning of my oldest daughter's 7th birthday... I sit and reflect over all that I have watched her go through and accomplish in her 7 little years. She is am amazing little girl who is growing up so fast. I think back to the day she was born and the feeling of pure love I felt as she was slipped into my arms. Within minutes of entering this world she gave out a smile that could brighten a room in seconds. I recall the gaze in her eyes as she stared up at me... HER MOTHER... oh what a feeling, to be a MOTHER! I didn't know what I was doing at all, I was barely 19. But Kylee would teach me, she was a relatively easy baby and was so patient with me. I nursed her shortly after she entered this world and it was pure harmony how she knew exactly what to do and I fumbled around trying to figure out how to hold her "properly". Little did I know, all those special holds they teach you, do not matter because the baby knows how they want to be held and will wiggle and nuzzle to be held how they want.
Kylee taught me how to be a mother. Now, since I am mother to 3, I know I made so many mistakes with Kylee and I so wish I could go back and change some. But then, I probably wouldn't. The mistakes are what shape us into who we are.
Still today, as I look at Kylee, I am in awe at how beautiful she is and how she is just perfect in every way (to me anyway ;))
Kylee was born the day before Halloween, I sent her father out to the store to find a tiny costume for her to wear the next day... he returned with a pumpkin shirt. How funny it was to awake the next morning (of course doped up on pain meds) to find a pumpkin baby and kitty cat nurses.
Happy 7th birthday to my beautiful firstborn baby girl!! I can not wait to see what the future holds for you.

Monday, September 17, 2012

Happy Birthday Auriana!

Happy 4th Birthday to my baby girl, Auriana Faith! I am so blessed to say I am Mommy to this special princess!
As I think back to the day she was born 4 years ago, my head fills with emotions... emotions of fear and joy all spiraling together. The day Auriana was born was one of the happiest days of my life! You see, I had spent over 3 weeks in the hospital on bed rest. Doctors were constantly monitoring her growth and her heartrate and I had fetal stress tests daily. I was exhausted from the specialists telling me what all may or may not be "wrong" with my baby. I remember that day very well, though. I woke up that morning, still in the hospital. The nurse came in with the fetal stress test. The results showed that "the baby" was not showing much movement. An ultrasound was ordered. The ultrasound tech came in and measured "the baby" on the screen and did a weight estimate. I recall asking her, as I did every time she completed an ultrasound, "how much does she weigh?". Every time, she had only gained about an ounce. An ounce was good, though, because it meant that she was still growing.
I had been told months earlier that Auriana would be born with a severe heart defect and would need surgery within her first year of life and it was imperative that she be born as close to her due date as possible and weighing as much as possible. Not long after, the doctors also stated that she appeared to have "a form of Trisomy" and none of them seemed to think it was one that was compatible with life. In fact, the main MFM specialist who was over my care was dead set that "this baby would be born with Trisomy 13 or 18". I refused the amnio because Auriana also had a in utero condition called "umbilical cord absent flow of diastole" meaning that the umbilical did not allow the proper amount of nutrition to flow in to the baby, like a hose with a kink in it. This condition brought the risk of loosing the baby during an amnio up to 50/50...too high for me! This baby was a blessing and her fate was in God's hands. I had Faith that she would be ok and that would be her middle name.
So, back to the morning after the ultrasound... The ultrasound tech responded "I'm getting a weight of 3 lbs 8 oz. And I'm seeing what looks like a shadow on the right side of the brain. But, it is probably a mistake since it wasn't like this yesterday. Let me go discuss the findings with your doctor. We may repeat it."
The weight had dropped by a few ounces since the last scan just a few days earlier. I tried not to panic, finished cross-stitching the bib I was making for Auriana and ate lunch. I remember my dad called me from his deployment in Iraq at some point in between what happened next. What happened next was a nightmare. The MFM specialist came into my room. It was just me. My mother and Kylee had just left after stopping by for lunch. The doctor looked at me and said "have you had a chance to speak with NICU?" I told her that yes, we had spoken the them last week. Then what she said next will never leave my memory... "Well, I doubt you will need them anyway. You are being induced today and this fetus is probably not going to survive. It just has too many issues, and now it's stopped growing" and with that she left the room. I was stunned. I called my mother crying hysterically. She came back and had the doctor come back and explain it to her and I know she argued with the doctor quite a bit. Some women from church came by. I took a shower. A preacher came by and prayed with me and when he asked "what should I pray for?" I said "pray this baby has Down Syndrome and not one of those other things." so THAT was the prayer "LET THIS BABY HAVE DOWN SYNDROME". The rest is really just one big blur- I know I was induced and then I remember the monitor kept beeping and I saw on the screen a heartrate of 45 at one point. The nurse reached over and turned it off. I said "is that the baby?" she didn't answer until the doctor walked out of the room. She leaned over and told me "that is your baby's heart rate. The doctor has ordered us to let the baby pass peacefully." I shouted "WHAT?!!! SOMEONE BETTER GET IN HERE AND DO A C-SECTION!!" After that demand they had no choice, emergency c-section it was! They prepped me and began to cut within 10 minutes. The surgeon said at one point "it's at 30, there's no point." referring to Auriana's heart rate. I wasn't even completely numb and felt the first cut. NICU was there. I remember saying "you better save my baby". Within a few minutes she was out with a cry like a little cat. She kicked the doctor on her way out. She was a FIGHTER!!
NICU took one look at her and said "Oh my.... mom was right. I think she just has Downs"
I touched her for 2 seconds before she was rushed out... she was very purple and had really low oxygen. She was 3 lbs. 10 oz. and 18 inches long! She was breathing and ALIVE!! 8 hours later a nurse came in to tell me that she had Down Syndrome and I screamed "THANK GOD!!" she looked at me like I was nuts. But, I knew that with Down Syndrome she had a chance to live. I was wheeled down on a stretcher to the NICU a few hours later to see her. She was tiny and precious. She would have to fight but I knew she could do it! She did have the heart condition and Down Syndrome and had a long road ahead.
Auriana Faith is now 4 years old, has had 2 open heart surgeries, a heart cath, ear surgery, wears hearing aids and ankle braces.... but she is a pure JOY!! She is amazing and she is my daughter! She is little sister to Kylee and now big sister to Lily Hope!
Auriana now does everything the doctors told me she never would, she walks, talks, eats, plays just like other kids, gives big hugs and kisses, and even sings in church children's choir!!
I thank God for all three of my precious little girls!
Happy Birthday Auriana! I love you and am so thankful for you just the way you are!

Sunday, September 9, 2012


So, it is hard to believe that it has been a whole MONTH since Kylee and Auriana started their new school! Kylee is a first grader this year!! So proud of her!! And Auriana is in the special education pre-k class! She loves it! Auriana is the only student in her class so she is spoiled. She has been wearing her little hearing aids to school and is doing great with them. Kylee has been having a harder time adjusting. She is used to being is a small Christian school with 12 kids in her class and this school is a lot bigger and she has 24 kids in her class... a big change. I just keep praying that she will adjust and have a great year! Kylee will be starting Girl Scouts this week, so hopefully that will give her a sense of "belonging" in this school.

Wednesday, July 18, 2012

Inside the mind of my kids...

What are you thinking?

I would really love to be able to glance into my children's heads periodically throughout any given day and see exactly what they are thinking. Wouldn't you, moms? Wouldn't you just love to see what your child was thinking when they poured soda on the rug in a well-thought-out, circular pattern resembling a crop circle? Wouldn't you love to see what they were thinking as they pulled the guinea pig out of his cage and proceeded to throw the pine bedding throughout your bedroom (where at least there is hard flooring unlike other parts of the house)? Wouldn't you love to see what they were thinking as they lined up cheerios across the living room floor? Wouldn't you love to see what they were thinking when they painted the couch with chocolate pudding and a glaze brush? Wouldn't you love to see what they were thinking while they sped their sister's wheelchair through the house and then brake checked it screeching to a halt?(oh, wait, that was just at my house. lol)

Something I would love to see is how my daughter with Down Syndrome processes information. Sometimes I watch her try to figure something out and you can almost "see" the wheels in her brain turning as she starts to "get it" and then you can see each little step to her processing that little bit of information. I watched her today as she sat trying to replicate every move her sister had made with her toy castle and little people. Auriana sat down at the little toy castle, just as Kylee had left it. She picked up the little princess doll, looked at it closely, then sat it down. Then, she picked up the little prince doll, looked at it closely, then sat it down. Then proceeded to do this with each doll that Kylee had played with, in the order she had used them. Then I watched her as she placed each doll carefully in the exact places Kylee had put them and then she would mumble little sing-songie phrases to herself as if trying to say or sing whatever Kylee had said or sung. She had been sitting in the floor watching Kylee the whole time and had remembered everything she had done, every little move she made, to the mark. She looks up to Kylee so much! Well, I wasn't the only one to notice this... Kylee noticed too. Auriana began singing this little mumbled "nah gah nah nah gah nah gah nah nah" to the slightly off tune of "Bippity Boppity Boo" from Cinderella. Kylee, who was watching her little sister but trying to appear not to be, stood up and walked over to Auriana at that point and began singing the song and making the prince and princess dance as the castle. Then she looked at me and said in amazement "Mom, Auriana was doing exactly what I did with the castle. That's so cute." This is one of those "proud mom" moments!

Of course, later on in the evening Auriana started singing her own song while we were dressing for bed and Kylee swore that she said "A B C D E F G come on baby shake your booty" Hahahaha.... Kylee and I both got a good laugh out of that!

It is a proven fact that individuals with Down Syndrome do have slower cognition than that of the average person, so it is understandable why I can sometimes watch my daughter figure something out as if in slow motion (pick something up, look at it, think what to do with it, then complete the action. Rather than all in one continuous graceful step.) Now, there has been talk in the news lately and in the medical world about drugs that can improve cognition in individuals with Down Syndrome. For example, in this article talks about a researcher who is using Alzheimer's drugs to treat and help improve memory in individuals with Down Syndrome. And the Down Syndrome conference I attended back in the Spring discussed another drug trial which is taking place as stated here using a specifically formulated drug called RG1662.

So, I have started thinking. Even if they could, without a doubt, improve the memory and cognitive functioning of my daughter (who tests at about 2 years behind her age level), would I want it? If her cognition were improved, would she have the same sweet disposition about her? Did God create her with the cognition she has for a purpose? Is it "who she is"? I guess the answers to those questions I would have to be able to see inside of God's mind to answer.

Sometimes I feel like Auriana knows things that other people don't know because of how she is. Like she is closer to knowing the secrets of the world than we are. As if she can sense spiritual presence. I believe this is due to her inability to reason it all away. I believe that a lot of things we reason away before we let ourselves believe it, but since she doesn't have that ability she knows more.

There is only one person who can see what we are thinking!
Psalm 139:4
"Even before a word is on my tongue,
behold, O LORD, you know it altogether."

Wednesday, June 20, 2012

Summer 2012 already

So.... it is Summer 2012 now and a LOT has happened!! Kylee graduated Kindergarden! Congratulations to my big girl!! She is so smart and is reading at an amazing level now! She will be going to a new school next year, and so will Auriana (I am not sure how I feel about this, lol) Our summer so far has been pretty hectic, but fun too. We have something going on every Monday, Tuesday, and Wednesday every week... ranging from therapy to movie club. We have already gone to VBS and Panama City! Auriana is doing aqua-therapy again this summer and we've added Kylee to swimming lessons and me and Lily Hope just hang out at the pool during all this :)no complaints there, right. Auriana has graduated from high full AFOs(ankle braces up to knee) to low SMOs(ankle braces just over her ankles) so I am so proud of that too! They are adorable little pink and black snake skin print that Kylee picked out for her. This means that walking on her own is strengthening her leg muscles and tendons! (Boo to those NICU docs that said my baby would never walk and her toes would be stuck to her shins forever without corrective surgery! Wish they could see her now, and guess what... she never had surgery on her ankles!) God is so good!! So, just a short little update amidst our chaos but hopefully I'll have some time to do a longer update soon ;)

Thursday, February 2, 2012

Auriana is walking!!!

Auriana is walking now... on her very own.... WITHOUT the assistance of a walker!! She is really
trying to be the big girl since her little sister was born :) I am very proud!!

Friday, January 6, 2012

looking back at 2011

As I sit and think about my 2011, I realize how much God was truly watching out for my family. Although it may not have seamed like it at the time, He was with us all along.
Major events that God got us through...
In January, God continuously provided me, Kylee, and Auriana with food, warmth, and shelter.
In February, God kept Kylee safe during the weekend she was taken from me, and He returned her home safely to me, and continues to do so every other weekend while she is away from me.
In March, God showed me to trust him as I was given custody of Kylee and Auriana. I have always been the one to take care of them, but the mental abuse I had been through by their father had me so worried about what the outcome would be.
In April, God allowed me to witness Auriana's first real independent steps.
In May, God gave me the instinct that maybe Auriana's heart was not right and I listened and took her to the cardiologist against the recommendation of other doctors, only to find that the area between her aorta was closing off very quickly and surgery was needed very soon.
In June, God gave me peace as I learned that the baby I was pregnant with was to be another girl and that she did not have any visible heart defects on the ultrasound as I had feared.
In July, God blessed me with the ability to take my girls on many special outings including the zoo and aquarium.
In August, God protected Auriana through her heart cath procedure. And God allowed Kylee to go back to school with the friends and teacher that she loves.
In September, God protected Auriana through her second open heart surgery and has given her strength and healing. Auriana turned 3 years old this month as well.
In October, God allowed me to throw Kylee an amazing 6th birthday party complete with a hayride. Kylee absolutely loved it.
In November, God allowed us to find a church that we have truly been able to connect with and has something for all of us.
In December, God allowed us to welcome Lillian Hope into the world on the 1st. God provided my children with a wonderful Christmas. God has allowed us to be surrounded with amazing friends.

These are just a few of the times I can think of that I truly saw God at work, although He has been with us every day, every hour, every minute, every second....
I can not wait to see what 2012 has to bring and what way God will reveal Himself to us!