Saturday, October 29, 2011

This time, 6 years ago!

6 years ago right now at this very moment I was checking into Southern Regional hospital in labor with Kylee!! She was born 15 hours later at 1:30 PM on October 30.
Happy birthday my beautiful little Kylee Mikay!!! I love you so very much!! You made me a Mommy!

We celebrated Kylee's birthday last weekend with a Scooby-Doo birthday party and Hay Ride!! She said it was the "best birthday ever" lol :)

Happy 6th Birthday baby girl!!!

Tuesday, September 27, 2011

oh the joy... feeding charts...

So, since Auriana has been having such a hard time eating lately, I have begun keeping a feeding chart again. I charted everything she ate and drank for almost a year before and she had been doing so well that I stopped. Now, thanks to her having surgery and being sick, she is having food aversions yet again and so the charting begins. This time she is not really wanting to eat anything with texture. Only apple sauce and drink. I have started adding meal replacement powder to everything she eats or drinks to keep her calories up! Please pray that her appetite improves... I would hate to have to put her back on a feeding tube.

Sunday, Grandaddy got her to eat a couple of chicken nuggets and she drank some goat milk.
Yesterday I made her a 70 calorie/ounce smoothie and she drank about 8 oz of it.
Today, no such luck thus far.

Auriana... EAT BABY....EAT!!!!!!

Saturday, September 17, 2011

Happy 3rd birthday Auriana!!

Today Auriana is 3 years old! This is almost the exact time of day that I first got to hold her 3 years ago. She was born at 4:37 in the morning, but immediately taken to the NICU... it wasn't until around noon that I was able to hold her for the first time. Since Auriana came into my life, a lot has changed, mostly for the better. She has brought so much joy into my family and so much happiness to her big sister. She has proved so many doctors wrong. I remember being told that she would probably never walk or talk, and yet she is talking and taking a few steps on her own.
Auriana's 3 years on this earth so far have not been without pain. She has gone through more than most of us will in a lifetime and all with a smile on her face most of the time. 11 days ago Auriana had her second major open heart surgery. She amazingly only stayed in the hospital for 4 days this time. She was in the hospital for 12 days with her first open heart surgery.
She amazes me every day with her determination to do what every one else is doing. She has to work so much harder to learn things, but when she is determined she will make sure she gets it in her own time her own way.
Happy 3rd birthday Auriana!!
God has given me such beautiful gifts and He continues to bless me daily!! For that, I am so very thankful!!

Friday, August 19, 2011

Auriana has open heart surgery September 2!!

Auriana will be having open heart surgery September 2!! Dr. Kirshbaum does have some concern about the weakness in her aortic valve, even though the cath doctor said it looked alright. He will be opening up her aorta so that blood can flow freely as it should. The severe narrowing has weakened her valve some though, so he will be keeping a close eye on that during surgery. Please go ahead and start praying for the team that will be working on her during this surgery and for the nurses who will be helping her recover afterwards.
I have spoken with them about my concerns that she is proned to becoming dependent on a feeding tube and they have agreed that there will not be a feeding tube placed once she is awake and aware, but it is MY responsibility to make sure she eats and drinks what she needs or they will have no choice but to place a feeding tube. I will have about 48 hours after she's awake from surgery to get her to eat and drink!! Pray that this is not a problem!!
Also, pray for Kylee. She has been through so much in the past few years and she is very worried about her sister who she loves so much having another surgery. Pray God will comfort her and give her strength and peace!

Thank you all for your continued prayers!!

Here is an example of what aortic stenosis looks like

school started!

Kylee started Kindergarten last Monday and she is loving her class! She does very well at school! It gives her stability and somewhere she can be proud of her accomplishments, which she needs. She is still going to the same Christian school that she has gone to for the past few years, which she loves. It is good for her to hear every day that what she believes (The Bible) IS REAL and that all the Bible stories ARE TRUE! She is constantly asking "this story is true, right?" when we finish reading a Bible story. It is very important to her that we keep telling her that Yes the Bible is all true and Yes God is bigger than everything, and Yes God knows everything, and Yes God is always with you!

Kylee's first day of Kindergarten

Auriana was able to go to her first day of preschool last Tuesday! She LOVED it! She kept up with all the other kids and did very well while she was there! But, once she got home, she was overly tired and slept for hours and then complained that her chest and head hurt and her oxygen was really low. So I called her cardiologist and he said no more school until she's cleared to return after surgery (probably November or so when she'll get to go back, depending on how she heals. Although with that being flu season I may just keep her out until after the holiday breaks). She is sad she can't go back and says "me too" when I drop Kylee off, but it is what is best for her so she is strong for surgery.

Here is Auriana on her orientation day

Auriana's first day of preschool and Kylee's second day of Kindergarten

Thursday, August 11, 2011

Heart surgery coming up again... date TBA. School starting next week.

So... Auriana just had a heart cath last week. Narrowing in her Aorta had been seen by her cardiologist at her last appointment in July. They were planning on placing a stint during the heart cath, but ended up not doing this. They determined that the narrowing is too low in her aorta to place a stint, but they had thought that her aortic valve was weakening and may need replaced and they determined that her valve is healthy. The narrowing in her aorta is very very bad though and will need repaired very soon---within a MONTH!!! I am now just waiting on surgery to call me with a date. I hate being on the edge of my seat waiting on that phone call. Every time the phone rings it crosses my mind "is it Children's? Are they calling to tell me the surgery date?" I am terrified of her having open heart surgery yet again. I had thought heart surgery was behind us, but not yet. I keep reminding myself that God is with us-- especially with my sweet girl-- and He will keep her safe.
There are so many other of our little "heart friends" that are so much worse off than my Auri right now. It is so saddening to hear when one of them is getting worse rather than better. Please keep our friends Levi and Katelyn in your prayers as well!! They have very extensive heart defects that are much more difficult to treat!

Here is my Auri right before her heart cath

Next up: SCHOOL!!
Kylee will be starting Kindergarten on Monday! She is excited about going back to school and being able to see her friends every day! She had open house and met her teachers today. She would not let me take her picture, but here is a picture of her with her best friend (who is visiting from out of town this week) after open house when we went to McDonald's for lunch.

Auriana will also be going to school this year. I have put her in the older one's class since she is soooo tiny, even though she is almost 3. She also went to open house today and met her teachers and the kids who will be in class with her. She fit right in with the kids. She was playing and even walked some without her walker. When I went to pick her up she told me "no. I stay". When we walked outside to go to the car she even turned herself around, on a hill, with her walker, lifted her walker up to place it on the sidewalk trying to go back in the building. She did NOT want to leave. I think she is going to LOVE school! Here is a picture of her walking out to the car with her backpack to leave for open house this morning...

Auriana will only get to go for a few weeks before having to have her open heart surgery and then she will be out for months, but I am so thankful that she will be able to experience what "normal" is before she has her surgery.

We will try to update next week with 1st day of school pics and a surgery date!!

Wednesday, June 22, 2011

how did we get here?

I keep looking back at my previous posts over the last year... and looking at the "happy family" pictures and then I think to what was really going on when those pictures were taken. I think I lied to myself so long and tried to put on a good face for my kids and the world, that it became reality to me and then when the real reality actually hit, I was so shocked that it had happened... but really... our family was broken for a long time. He was not really part of our family for a long time. I look back at my November post and see the picture of our family, and it is broken... it hurts to even look at. The girl that I trusted to stay in my home because she "needed a place to stay"... well, there she is, standing there in the middle of my family. She is NOT my chidlren's mother! She was not married to my husband, but there she is in the middle and my on the end... she's beside my "husband" and I am on the end... why did I not see this? Why was I so stupid? And, why now, will he not allow me to be free to move on from this? Why am I stuck in limbo? Why are my children stuck in limbo? It is not fair to any of us! It is not fair to my children to have to be stuck in the middle of all this! I think back over the years and I think "it's so obvious now. he never wanted me. he never wanted us." When God is not the center of your marriage, the center of your family... then who do you think is? I think that Satan is. If God isn't, then it could only be Satan. I have always tried to shelter and protect my children, but I can't do it. All I can do is be the best mother I can be! Love my children! Praise my children for their accomplishments! Take them to church and show them God and the truth! Pray for them! Pray for their healing! And trust that everything will turn out how God has planned for it to! All of this has happened for a reason... God does not make mistakes!
When the doctors told me Auriana would not live, I had faith that God would bring her through and that He would allow her to experience life and the love of her mother and that Kylee would be given the chance to be a sister! God brought us through that and He will bring us through this! My children are living proof that God does exist!
So... how did we get here? God brought us down this path, for some reason or another... and he will continue to lead until we are through it...

Saturday, June 11, 2011

Starting over... sort of...

I have begun trying to "start over" with me and my girls. We are trying to move on and live our life as "normally" as possible. It is hard to do when I have to send them to their father's house every other weekend. Some people say that divorce is like a death.... sure, but it's a "death" you have to see every other weekend. And being in "limbo land" because he refuses to sign divorce is even worse. Anyhow... God will get us through this and God will give us a new and better life in His time!

My good friend, Sarah Norman, who owns Sunshine Photography took some pictures of me and the girls. Here are a couple of them. I will share more soon.

Friday, May 27, 2011

Blog name change and a few updates

I decided to change the blog name today for a number of reasons.
As many of you may know our "family" has changed a bit...
Michael and I have been going through a separation and divorce since December 2010. We can not see eye to eye on many things and we have had a lot of hard times over the last couple of years. Our divorce has been difficult, but I believe once the stress of the divorce process is over and we can all move forward we will all be in a much better place.
Another reason for the name change... I felt the title should say more about the children, since that is who it is about... and they are Life's Little Blessings!! They are both such a blessing to me in their own little ways.

Kylee Has recently graduated from Pre-K and will be going into Kindergarten next year!! Huge congrats to me big girl! She has made me so proud to be her mother! I always tell her she is so special because without her, I wouldn't be a mommy... she was my first little blessing and she is the one who made me a mom in the first place! I thank God every day for what a wonderful blessing she has been in my life!!

Auriana has come such a long way over the past few months, talking more and more every day, learning new signs every day, getting stronger and stronger and learning to use her walker more and trying to stand on her own. She will be starting aqua-therapy with her physical therapist soon and we are looking forward to what new doors for progress this can open up for her. She hopefully will start preschool in the fall at the same school as her big sister, which I hope will give her the ability to learn new things and progress even more while interacting with her peers. I am also so blessed to be her mother!! She made me a "special needs mommy" and introduced me to the wonderful and sometimes not so wonderful world of special needs.... but each day with her is a blessing!

Now that I have shared the good... I regret to share with you all the not so good... Auriana will need another open heart surgery soon! She has Aortic Stenosis. Muscle tissue has re-grown in her aorta near her atrium. This is the same tissue that was removed once before during her AV Canal repair. Dr. Kirschbom, our wonderful heart surgeon will be working with Dr. McConnell very closely to determine when the best time will be to do her surgery. They feel that at this time it is best to wait a few more months to see if it is going to grow any more before removing it. She is likely to need this same surgery done multiple times over the next few years if the tissue continues to re-grow. Please keep Auriana in your prayers that the doctors will plan it all just right and that this will be the last heart surgery she needs ever! I so hate that she has to have surgery again, but I do still have FAITH that God will be with her and protect her!! FAITH is her middle name, after all! Please also pray for Kylee during this time as well. She is having a hard time with a few things as well as she will likely have a hard time with her baby sister having to have another surgery! God hears our prayers and knows what we need... only He can control our path in this life!

Wednesday, January 12, 2011

Our tube feeding journey!! Start to FINISH (as best as I can portray it)

The only place I know where to start is day 1... Auriana was born on September 17, 2008. She was 3 lbs. 10 oz. and we knew she had a heart defect (Complete AV Canal) and found out 8 hours later that she definitely had Down Syndrome as well as another heart defect (large PDA). She was immediately placed in the NICU at MCG and put on TPN feeds (IV fluids) for 2 days. On day 3, an OG (down mouth) tube was placed and she was fed a small amount every few hours of a high calorie formula. A few days later the tube was switched to an NG (down nose) tube, as formula was slowly increased. One nurse did attempt a few times over the next few days to bottle feed her, but I was never allowed to breast feed her... actually I was told that breast feeding this baby could KILL (right?) her! We brought her home 15 days later still on NG feeds, weighing at this point about 5 pounds, and were told we could attempt to bottle feed her but not to expect much luck. We did attempt for a few weeks and she threw up so much and was so uncomfortable and tired that the doctors recommended we stop bottle feeds all together. So we did. The next few months would be about weight gain weight gain weight gain... we had to get her big enough for surgery to repair her heart defects. Well, she gained 7 pounds over the next 5 months or so and was ready for her heart surgery in February 2009. Heart repair success!
We were then told to start trying to bottle feed again. But, by this point she had such horrible oral aversions that it was almost impossible! I managed to get her to take a few ounces a day for a few months, then we started feeding therapy. She would fight and scream every time we sat her down to eat... we tried baby cereal, bottle, cup, you name it! She would eat very little. So, she remained on the NG tube feeds as her main source of nutrition.
Sometime right around her 1st birthday, we took her for an evaluation at Marcus Institute feeding program. They evaluated her and believed she could benefit from their intensive feeding program, but insurance would not cover it and it would cost thousands of dollars and living at the center for months! We could not afford or manage this! So, she remained with the NG tube feeds every 3 hours day and night!! A gruesome schedule for me as mother to complete alone on top of our already busy schedule with appointments, therapies, getting Kylee (older daughter) to and from school. I was a walking zombie! On her 1st birthday, she *tasted* her cake!
A few months went by and she got some more teeth in and wanted to nibble of things, so I started giving her crackers, crunchies, ice cream, frozen peas... and through the summer moved on to french fries, potato chips, apple sauce, etc. But, still she would not DRINK anything!! We continued working with our wonderful feeding therapist to try and find ways to make her more willing to drink and try new foods. Without the therapist, I do believe she would be so much further from where she is now. Through therapy we were able to get her to work through the aversions into a stage of acceptance.
At her 2nd birthday she ate 2 slices of ice cream cake! She could eat, but the doctors still told me it was not enough! I began to wean her from day time tube feedings AGAINST doctor's advice!! (let me also throw in here, at around 11 months old I switched her to Dr. Sears Goat milk formula recipe (with a few addins not listed in his recipe), also against drs advice, and she stopped throwing up and I weaned her from prevacid against Drs advice. I also stopped giving her Reglan as an infant against Drs advice) Now, I am not recommending you go against your doctor's advice, but after seeing with my own eyes that doctors do not know everything and Mother's instinct is called *instinct* for a reason, sometimes as Mom we must go with our gut!
So, I went from feeding her 150 ml every 3 hours day and night through a tube, to feeding her 200ml 4 times in the night and allowing her to eat in the day.
I thought she was doing good, aside from not drinking in the day, but she was getting fluid at night. Well, then came her check-up. Her pediatrician flipped out that she had lost weight! I mentioned that we have to take into account that she had just recently gotten more mobile and independent, walking with a walker, crawling everywhere, and had recently given up most of her nap time. The doctor insisted that I put her back on the grueling feeding schedule she had once been on and insisted that if she did not gain weight in the next month, I would be reported for malnourishing my child... so, I added more tube feeds, although NOT in the day... I added 50 ml to each feeding at night... and she still ate during the day, and by this point had began drinking a little as well. I made several other specialist appointments to try to get to the bottom of why she had lost weight and why she needed 3000 calories a day to gain weight (yes, that is what she was getting at this point 3000 calories a day!! Appointment after appointment no one could find anything wrong. They all kept recommending increasing the tube feeds! I refused!!! (also, would like to throw in that at one point they had insisted on surgically placing a g-tube as well and I refused)
I switched her pediatrician, got a good report with her and she mentioned something about talking at the next appointment about weaning from the feeding tube. But, then we saw our endocrinologist, who is also a very established and respected pediatrician. At this appointment, she had gained 3 pounds since the pediatrician appointment only a little over a month earlier. I asked him "why does Auri need so many calories to grow?" He replied plain and simply "She doesn't!" After asking me a few questions and reviewing a feeding log I had kept recently, he said "take out that tube and DO NOT put it back in!" He said "she will eat when she's hungry and drink when she's thirsty!" I looked at him amazed and said "Really?!?!" You see, this had been my theory for a long time, but I was too scared to do it without doctors giving me the ok, especially after our experience with all the other doctors. He informed me that she WILL lose weight and it is perfectly ok to do so, that her metabolism is all out of whack from being force fed for so long and forced to burn soooo many calories.
So, I brought my little love bug Auri home and told her we were getting rid of her tube! She says "bye bye tubie" I said "Bye bye tubie!" I showed her the tube and said "what should we do with this yucky thing?" She responded "Uck. Tash!"..... so WE THREW THE TUBE IN THE TRASH!!! She DRANK a cup of goat milk, and went to bed. The next morning she woke up screaming "Jink... jink, jink..." My baby was THIRSTY A feeling she had never felt!! Now, she eats about 5 times a day... and really EATS... and DRINKS about 16 ounces of liquid a day by mouth with a cup!! She still does not have great skill at using a cup, but she has gone over 2 years without having to learn how to suck a bottle or drink a cup. But, now that she is thirsty, she's learning quick. I have kept a 7 day food journal and calculated calories for a few days and she is eating between 1100-1600 calories a day... which is exactly what a 2 year old should consume!
I am so proud of my baby and so glad we made the appointment with that doctor!!
So.... NO MORE FEEDING TUBES HERE!!! And we are SOOOO HAPPY!!! Mommy is starting to feel less and less like a zombie each day... ;)
so, there you have it! I have wrapped up our 28 month tube feeding journey into this post!! Hoping it may be helpful to others who are on this journey and may be a shed of hope that there is an end to this journey of tube feeding!
I also want to note that God was with us on this journey and we would not have been able to get through it without our trust and faith in Him!!

Wednesday, January 5, 2011

Merry Christmas, happy new year, and Auri stands!!

Merry Christmas!! The kids had a wonderful Christmas thanks to all the donations of gifts!!

It's now 2011 and BIG things are happening!!

Auriana is doing GREAT walking with her walker!

Today, I got the go-ahead from 2 doctors to STOP TUBE FEEDING!!!!! WOOHOO!! Their theory is that she does NOT need 3000 calories a day and is just genetically engineered to be small... they said no worries if she looses a little weight, but that her gaining 2 lbs in a month after starting back tube feeds proves that she does not need them because that is too much weight gain. Wish us luck! I will be keeping track of everything she eats for the next week or so, and I will be getting up an hour early (which should be no prob since I don't have to get up all night) to feed her a "formal" breakfast and add all her vitamins into her food. Now, PRAY SHE KEEPS EATING GOOD AND GAINING WEIGHT APPROPRIATELY!!

Also, she just recently started pushing herself up to stand, and she is doing great!!

Oh, and Kylee had the cutest Christmas program at her preschool! If you have not seen that video... watch it here