DAY TO DAY!!!

I kept thinking that I would hurry and post a blog but things have been so busy. We are all feeling better and I have my voice back after two days without one ( no voice for a mommy is a very bad thing). Kaidence's hole in her chest finally closed off and so we gave her a bath. Now this was her first bath in our tub ever. Kaidence was always so small before that we would bath her on the kitchen counter on a cookie sheet with a towel on it. Obviously in the hospital she only had sponge bathes. This did not go over to well with Kaidence, she thought that it was pretty scary. Kaidence is wanting to take her milk by mouth. In fact, she has started to pull out her NG tube and put the part that drips the milk into her tummmy in her mouth while her feeding pump runs. She has been doing this often but the bad thing is she still needs to have her swallow tested before we can get the green light to feed her thinned liquids. We are trying to teach her how to suck still and she seems to be improving.
This next week will be busy. We have 3 appointments up at PCMC. Kaidence's Cardiology appointments have gone well.
To celebrate Valentine's Day and Kaidence's Birthday that is coming up we took heart shaped sugar cookies and a card up to the hospital with Kaidence's name on them. It was great to see everyone. We miss them very much but it is great knowing that we have made lifelong friends. Camden and McCaden had their parties at school and had a great time eating all of their candy.
Oh, and we were also sooooo excited to get a check in the mail bigger than the $30. 00 that SSI said they would send us every month. They changed the amount and it will now be the perfect amount so that we can pay for Kaidence's medication every month with it. What a huge relief and what a blessing. After I finished crying we prayed and thanked Heavenly Father for this wonderful blessing and for changing whomevers mind that made the original decision of the $30.00. We know that things will work out for our family and they have so far. We just have to remember to be prayerful and faithful. It is much to easy to get caught back up in to normal grind of life and forget all the lessons that we have learned. I don't ever want to forget what I have learned. I have missed feeling so close to the spirit. When we were making all of these life altering decisions for Kaidence and we were constantly fasting or fasted for. I was amazed at how prominent the spirit was in my life, as though we were true companions.

ON THE MEND!

I am sorry that I have not kept you updated more often, that influenza has been pretty yucky. McCaden is feeling better. I thought I was starting to feel better, but today I have felt a little worse. It seems that it is a two part illness. McCaden's was that way and mine seems to be trending that way. The second half however is more cough, voice and sinus stuff. I am trying to decide if Camden is getting it or not. We have had him and Kaidence on Tamiflu and so hopefully they can both continue to avoid it.
Kaidence is doing great. She is taking 4oz tube feeds at a time without any vommiting. I have not had to use suction for over a week. She is also getting rid of the oxygen at night. The doctors are thrilled with how great she looks. We will try to get her another swallow study because I think that she is ready for thinner liquids. I am still trying to teach her how to suck on a bottle. She is our happy little Kaidence and I can't believe that she will turn 1 year on February 23 rd. It has gone by so fast and yet so slow. I guess all I can say is "what a year!"

I wish my spell checker would start working again!!!!

Influenze - A

Well, we will be staying away from everybody. Apparently the cold that McCaden has we just found out is influenza-A. Camden is getting sick and Mike and I are getting sick as well. We put Kaidence on some medication to hopefully prevent her from getting it too bad. And, yes we ALL got a flu shot this year.

BETTER DAY!

Yesterday was about like the day before. CRAZY!!! However, today was better. I think that after two days of constant worry and phone calls trying to figure out Kaidence's medications that it is all worked out the best it can be. I also gave up hope for Medicade. We would be severly penalized if we were to take out our retirement. Not smart for our situation. Mike works hard for our family and our future. It would be nuts for us to give up that security for the next 20 years. We will just hope and pray that whatever SSI gives us is enough to lift the burden of part of the medication co-pay each month. I know that somehow it will all work out.

Kaidence got caught up on most of her immunizations and she also had her synergyst shot today (protects against RSV). She can never have any live vaccinations like the chicken pox with her immune system. Her pediatric office and doctor at have been awesome to come to the house to do her check-ups and shots. This will help out a lot when it comes to keeping Kaidence healthy. We are so grateful for them and we feel very blessed to have a wonderful doctor that we can trust to care for our children. She after all was the one that found Kaidence's heart condition in the first place. We are having McCaden tested for influenze. Kaidence's eating has greatly improved this last week. She is know have small bolus feeds to her stomach as well as taking food by mouth. I thickened her formula today and put it in a bottle with a hole cut out of the nipple. She is still leaning how to suck but I think she is starting to get the hang of it. She took 2 oz of formula. It took a little while for the first ounce but the second went fast. She loves her bottle now and I think she may remember it a little. Early Intervention came out today and evaluated her. She varies anywhere between the levels of a 4 month old and a 9 month old. Makes sense though when thinking of how long she was sick. We would have been so much further behind if she couldn't get the "Berlin Heart" that is if she even survived the wait. She is currently jumping in her Jumperoo. The boys are runny around screaming and I am trying to keep my sanity and ignore the terrible sore throat that I have started to get. Waiting for daddy to come home. All of you mom's know what I am talking about.

SUPER DUPER CRAZINESS!!!!!

Disclaimer: My spell check is not working so beware of typos, but no need to make mention!
Well, we just got home from the hospital. We have been their since 8:45 am. I am exhausted, starting to feel a little sick and super grumpy. I don't want to say that today was a horrible day because horrible days are the days that one gets terrible news about a loved one. I have a new perspective on things and I do try to remember that. However, I can use the word "frusterating." It started off by IV team never coming to draw Kaidence's labs after 5 vocera pages and an overhead page. Her blood draws are timed and so when they still hadn't come by 11:00 and I was already 3 hours late for her cyclosporin dose we gave up. No lab test results today. Then when I called to find out where our mail order medications were that Kaidence is out of, I was told they weren't shipping them until friday. So I had to get 10 day supplies and pay another darn co-pay because someone else messed up. They also told me my co-pay for Prevacid was $3,000.00. Obviously, not right. Then I got a phone call from Mike telling me that Medicade called and that we have been denied because we have too many assets. They want Mike and I to take out all of our retirement. We don't have that much to begin with. We can only have $3,000.00 to our name in combined retirment and bank accounts. Here is what is crazy, they don't care how it is spent they just don't want us to have it. So they would rather have us with no savings for the future. We need a retirement because I don't trust our government to take care of me when I am older. How can that happen when they tell us all to quit our jobs? No employment, no taxes, no money.It would be so much easier to just have Mike quit his job, but that's not happening from us.
I am trying to keep things in perspective today because Kaidnece's surgery went well. She did great. We are slowly coming off some of her medications and possibly her oxygen in about 2 weeks. We are also pulling up her feeding tube to her tummy tomorrow if she is feeling well. Everybody was so excited to see Kaidence at the hospital. I must say that it was nice to only have a 30 minute wait in the OR waiting room instead of a days wait of long tense hours. We are so grateful for the many ways that we have been blessed and all of the other mumbo jumbo is just me letting off some steam, so sorry. We know that life could be some much worse and that this is nothing compared to what could be. I can't let myself lose sight of that. We have our miracle, how could I ever have the right complain after that?

BUSY DAY TOMORROW!!!

Today I took Camden to church and Mike, McCaden and Kaidence stayed home. McCaden is sick. The doctor said that he may have the para-influenza virus, but they are not sure. He has had a terrible sore throat, body aches, headache, sick tummy (no throwing up), cough, runny nose, runny eyes, fatigue (if you can believe that) and a fever. It has been wierd because the fever comes and goes. It makes him feel terrible and very sleepy when it gets high, but then I can give him Tylenol and once his fever drops he is playing again. No pattern to it, but very sudden changes in behavior and pain. It was nice to get out today and go to church. I have not been out and about much. It was also nice to fast this Sunday for someone other than my daughter. Fasting is so very important. I think that we often underestimate the power of it and therefore undermine the importance of it.

Tomorrow we have a big day ahead of us. Kaidence has Cardiology at 8:45 with an echo. We then check-in for surgery at 12:30 and she has the OR scheduled for her at 2:30. I guess alot of waiting. Kaidence is getting her line removed. This is the line in her chest that they used to deliver medication and draw blood from. So after this is removed Kaidence will have blood draws 2 times a week and get poked for it. I hope that they can find a vein that is useable. I am nervous for tomorrow. Kinda funny since she has had two major open heart surgeries and numerous little surgeries. She has had this procedure done many times before, but she was in the PICU then and they were in charge of giving all of the medical history, not me. I hope I get it all correct. I might just send them to the PICU to get their questions answered.

Kaidence is eating her squash very well. She ate all 3 meals today with us. Last night she ate over a 1/2 container of squash (huge deal for us) and no throwing up. She seems like she is getting exctited to eat. Still nothing sweet, she only likes the bland foods. We will pull up her feeding tube to her tummy tomorrow or the next day. She loves to chew on everything and anything. We have a happy little family and I love having us all together no matter what we are doing!

THE DAY I BECAME A HEART MOMMY!

I found this poem and did change the wording to fit it for a girl. However, I could never find the author's name. It somewhat describes what my new life is like!

One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.
I will not give up on this child.
I will listen to your advice.
I will give my daughter any chance.
No matter what the price.
I will learn all that I need
To help my baby thrive.
I'll even use that feeding tube.
My child must survive!
Will she need a lot of therapy?
Will she gain the needed weight?
Please God, help me do this.
As I accept our fate.
When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my baby's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....
no matter how I try.
And yet, I trust you hold her life,
and guide us through each day.
My mind says savor each moment she's here,
but my heart begs, "PLEASE let her stay"!
From pacing the surgical waiting room,
to sitting by her bed.
From wishing for a good nights sleep,
to learning every med.
From wondering, "Will she be alright?",
to watching her reach out her hands.
With every smile my heart just melts,
despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger
(It's the door to her beautiful heart).
God must have known how much I'd love her
(Just as He loved her from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".