Tuesday, August 6, 2013

Back to school...

Well.... summer is over again. "Back to school day" was yesterday. I have been a lot busier than normal since I am working now as a CNA. I haven't worked, until now, since Kylee was born over 7 years ago. I had always intended to be a stay at home mother and stay home to raise my children. Well, that plan didn't work out so well, I guess. Anyway...THIS was the very FIRST "back to school day" that I have not been the one to drop off my kids and walk them in to school. I actually handled it a lot better than I thought I would. And both Kylee and Auriana seem to enjoy their classes and are doing well at school so far. Lily, I'm sure, misses having her sisters around all day... and (i hope) misses her "Momma" too (at least a little). She has been with her "Grandmother" though this week who she loves.
Oh.... more life changes......only for the better. I said yesterday to someone "I don't even feel like I'm in control of my life. All this is just happening and I have no choice but to just go with it".... she said "Because you're not in control of your life, God is". Well... there is that!

Wednesday, June 5, 2013

Shame on Chick-Fil-A....

Now, don't get me wrong... I LOVE Chick-Fil-A and everything that CFA stands for, which is part of the reason I say shame in this circumstance!
Today, I was slightly disappointed in Chick-Fil-A...
So, let me explain why... We met some friends at a local CFA for lunch and to let the kids all play together. Now, as many of you I am sure are aware of, kids can trade their "toy" from the kids meal for an ice cream. So, my kids were trading their toys for an ice cream. But my friend's kids are whey protein intolerant which means that they can not digest whey protein enzymes in non-cooked dairy products (basically they can not have uncooked milk, ie. Ice Cream!). So, we explained this to the assistant manager after we tried to trade their books for cookies instead of ice creams and were told that was not an option. I asked if it was an issue of money... according to the menu, the ice cream cone is $1.19 and the cookie is $1.09.... hmmm.... cookie is 10 cents LESS... so what is the problem?, I asked. She said it was "against their policy". Funny, since I had just done this at a different CFA location the week before with no problems at all!! Ok, so it is you policy to NOT accommodate a food allergy with a viable alternative that is already on your menu and is of equal or lesser value? Wow! Ok! That makes perfect sense! Then this girl proceeds to tell me in a smart-ass tone "Our cookies have milk in them"... Um... hello... I just explained to you that the proteins in the cookie have been broken down already by the heat, the ice cream they haven't!! So, I explain it to her again... she says "wasn't aware of that, but still our operator has chosen not to allow that." The American's With Disabilities Act recognizes food allergies as a disability and requires that "reasonable accommodations be offered." So, how can the operator of this specific Chick-Fil-A establishment choose to not follow a federal law?!?!?! I don't know, but hoping to find that out soon..... just saying....

Friday, February 1, 2013

CHD....

CHD.... three little letters... C. H. D.
What does it mean?
Congenital. Heart. Defect.
A Congenital Heart Defect is a heart defect that is present at birth. There is no cure, only treatment through medications and surgeries. 1 in every 100 babies born has some type of congenital Heart Defect... ranging from mild arrhythmia and murmurs to major complicated defects requiring several tedious surgeries to enable the child's heart to somewhat function normally.

We have experienced our share of the complications and strain a CHD can put on a family.
Auriana Faith was born on September 17, 2008 after I spent several weeks in the hospital on monitors due to umbilical cord absent flow and pre-eclampsia. An ultrasound around 18 weeks revealed that Auriana had a severe heart defect known as AV Canal Defect and possibly a chromosome abnormality. When she was born 5 weeks early, Auri weighed just 3 lbs. 10 oz. We found that she had Down Syndrome and a heart defect within hours of her birth. She got her first echo-cardiogram at just 1 day old! We were told that Auriana had Complete AV Canal Defect-- No walls in her heart at all!! All her blood mixed up together. She was too weak to eat and had to be NG Tube fed. She had her first open heart surgery around 4 months old. In this surgery, the surgeon went into her heart to build the walls out of gortex patches. She did well and was in the hospital about 10 days. She never learned to eat properly though and was tube fed until she was 29 months old. We were told that Auriana may need another open heart surgery at 10-15 years old to replace the gortex. She was followed by a cardiologist every 6 months. In July of 2011, however, we noticed her tiring more easily and turning purple often. I called and made her a cardiologist appointment. When her cardiologist did an echo he noticed that she had narrowing in her aorta-- aortic stenosis. She has another open heart surgery-- subaortic membrane resectioning--in September of 2011, just before her 3rd birthday! They left some of the membrane intact thinking that it was better to leave some since the conduction system of the heart is located in this area. The surgeon explained that he didn't want to risk her needing a pacemaker placed and wanted to give her more time to grow. He said she would probably need another surgery in 3-5 years to open up the aorta some more. Just a few weeks ago Auriana begin having chest pains and after a cadiac cath was done, we were told that the narrowing in Auriana's aorta was measuring around 80 percent (which was higher than it was prior to her previous surgery just 15 months ago!) She also had developed narrowing all the way up into her left ventricular outflow tract (LVOTO- Left Ventricular outflow tract obstruction). She needed surgery, once again, within the month! We went into this surgery on January 25, 2013 with an extremely high probability of her needing a pacemaker and with an expectation for a 6-8 hour surgery. Just 4 hours after surgery began, it was completed and Auriana amazingly had her own heart rhythm!! We will be heading home tomorrow, January 28, just 3 days after surgery!! We are hoping not to need anymore surgeries until the gortex replacement around 10 to 15 years old. Auriana has been a little trooper though! She is so strong and has taught me to be thankful for the little things in life! Auriana has a 7 year old sister, Kylee, and a 1 year old sister, Lily Hope who have been a huge support to her during her surgery! We thank God daily for being with Auriana and allowing us the blessing of raising her, Kylee, and Lily!! My life would not be the same without my 3 little girls in it! God continues to bless us through Auriana on a daily basis!
Today marks 1 week exactly since her THIRD open heart surgery! Last week at this time I was sitting in a waiting room waiting on news from the surgeon. This morning I woke up to my precious Auri smiling and playing with toys in her bed! Her smile through all her pain says it all! She is just happy... always....she will be in pain but still says "I so happy" as she signs happy as if she's doing the 'chicken dance' and shows her adorable grin.

CHD has taught me to accept the things I can not change and to slow down and enjoy the precious time I have with my children.

I have met so many people through our journey with CHD who were not lucky enough to know before their child was born that their baby had a heart defect. I was lucky enough to know and to be prepared and have time to research doctors who could best help her. Most CHDs are visible on ultrasound. And most CHDs are detectable at birth with a non-invasive test called pulse-oximetry. The pulse oximetry test measures the amount of oxygen in the blood and only takes about a minute to read.

This month is all about hearts... valentines day is this month, and it is also CHD Awareness month. Remember and honor all those little warriors living with Congenital Heart Defects! Most of them have gone through so much more than any of us adults have ever endured and they do it all with a smile!

The hospital my daughter has her surgeries at gives the children Beads of Courage. They earn a different bead for each procedure, test, and surgery. This is Auriana with her necklace. You can see by the number of beads just how much she has gone through. These are all just from her hospital stays.


Thursday, January 3, 2013

Another year gone... goodbye 2012... a new start

As I sit and reflect on 2012 I think of how much has changed in just this year. Where we all are now. It may not look like we have gone anywhere over the year, but so much has changed. Just a few to mention...
In 2012....
January started out with a 1 month old, 3 year old who had just learned to walk, and 6 year old who was in kindergarten just learning to read.
Today, I have a 1 year old who is walking and talking, 4 year old who walks like a pro and is saying so many words I thought she never would, and 7 year old pro reader in 1st grade!! Now, that is pretty awesome!!

My 2 year long divorce process from Michael was finally completed and I am free from him, aside from the fact we share 2 children together. Kylee and Auri visit with their father every other weekend and some holidays. Every time they leave is so stressful and takes so much out of me, and them, although they are adjusting to this change much quicker than I am. It is just something we cannot control, but God is in control and we have to trust him.

Another big thing.... Chris and I are married!! The LAST DAY of 2012 we decided to get married and there was nothing standing in our way. Although many people didn't agree and didn't support our decision, we felt it was best and the kids and we are happy!! This seems so long ago, although it was only 3 days. The minute we were married, I felt like our lives just fell into place. Like this was the missing link and why everything has been so off balanced for so long.

Our goals this year are that we will all learn to be completely respectful to each other in our family and follow God's will entirely, that we will see to it that we have family time every day and include a daily devotional or Bible reading in this special time together, I aim to complete a CNA training program and become a CNA, Chris hope to find a better full time job with insurance benefits for our family, we will fix Lillian's name (soon and hopefully this is a simple task), we have a goal of being completely self-sufficient and having all our bills paid off by summer and hopefully moving into a place of our own this summer.....

this seems like a lot, but we can do it with the help of our all powerful Lord!!

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!