Quick Updates

I know...I know...it has been a while since we have blogged. We have been super busy, super sick and super tired!!!

Here are the quick updates for now....

Nicholas is finally getting better from his Oct 28th tonsillectomy. He has had a rough time of healing. As soon as his 10 day antibiotic was over he developed a double ear infection. HELLO!!! They said the surgery would reduce his chances for ear infections. The poor thing never even got them before! When the ear infections were diagnosed, they also found that his throat was still swollen and the scabs were still there. So...back on antibiotics and steroids. Over the weekend he has started to smile again. Very sweet and very encouraging. Please pray he remains well. He has had such a rough time.

Steve had a sinus infection. He is on antibiotics and healing.

Stephen David got impetigo. He is also on antibiotics and getting better.

Brandon just started getting impetigo. Started him on antibiotics to fix it.

Megan has a ear infection. The ENT was a bit concerned with the amount of fluid and frequency of ear infection with her. There is a slight chance she could have permanent hearing loss. They will test her hearing in six weeks and we will go from there (another prayer request, please)

And then me...while everyone was sick, I had something too. I just did not have time to get sick or realize that I was so it got worse. I ended up having a sinus infection, double ear infection and finally had one of my ear drums rupture. That HURTS!!!! I am on day 10 and it still hurts plus I cannot hear out of that ear. The doctor said today that the rupture looks better but it is still highly infected (thus the pain and loss of hearing) So... I am on new antibiotics and praying for healing SOON!

That is our update for now. When we are better we will join the land of blogging again!

By the way...the day we came home from the hospital with Nicholas we had a guest waiting for us at the PICU doors. It was sweet JuJu and Amber!! Her scan was clear of any cancer! Huge, Huge, Praise! We are so excited for them. Keep updated at Amber's blog and keep them in your prayers.

Nicholas is Home!

Nicholas was discharged today to the surprise of us all. He was doing very well and there was really nothing that the PICU was offering him that we couldn't give him at home. In addition, a case of H1N1 was admitted which scared Nicholas' surgeon enough to kick us out the door. Praise God and thank you again for your prayers.

Nicholas' Surgery

Nicholas had his Tonsilectomy surgery today which went great. The surgeon was surprised that his tonsils were actually larger than he had anticipated. However, the surgeon is now more convinced that we will see more positive results as a result of this surgery. Because of Nicholas' history, he will be staying in the PICU while he is hospitalized. We are just not sure how long we will be here.

I would like to offer a special THANK YOU to all of you that have been in prayer. We have received so many calls, text messages, emails, and facebook messages. We are very appreciative of your love and prayer support.

A day at the Dixie Classic Fair

We took the kids out of school early to attend the Dixie Classic Fair, an event which we had never been to. We spent more money and more time than we had planned but made memories that will last a lifetime.

Megan eating her favorite food on the planet

Stephen taking a break from his funnel cake

Brandon eating a turkey leg that was bigger than his own
Hey, look who we ran into at the fair!
Megan and Anna Ritchie rode every ride about 16 times
Nicholas is under there somewhere

Megan, Brandon, and Anna Ritchie

Chris taking his life in his own hands

Brandon's red and sore forehead...see video below and you'll see why

Poor video but the laugh factor is worth it! That would be Daddy laughing hysterically in the background

Why this picture?

I have had people ask my why I don't change the main picture of Nicholas on this blog. It was taken a little over two years ago. He has so many cute updated pictures but honestly I am not ready to change it yet and this is why...

During the summer months of my pregnancy with Nicholas, we hung out at the pool a lot. Steve's mom had cancer and it was progressing rapidly. Nicholas' birth and heart surgery was rapidly approaching. The pool time was our little get away. As I sat on the lounge chair watching the kids laugh and play with Steve in the pool, I couldn't help but imagine the next summer. The next summer when Nicholas would be with us and the heart surgery would be done. I would rub my belly and tell Nicholas all of the fun things we would do next summer. The cute little swimming trunks I would get him, the float he would sit in in the pool. I couldn't wait until we as a family would be together the next summer.

Fast forward to May 2007. Nicholas had coded and was on life support. We lived second by second, not minute by minute, but second by second not knowing if Nicholas would live. It was an emotional roller coaster that drained us. Nicholas had been pronounced brain dead by neurology. We were told if Nicholas came home he would be a vegetable. I refused to believe that and so did many of our nurses and doctors. I looked at my son who lay there with eyes wide open, not blinking, legs and arms stiff, and knew that my baby was in there. I refused to give up. I would fight for him. Nicholas would come home.

So...I went to Target. Enough was enough. I was going to buy my son swimming trunks, sun glasses, a sun hat, and a float for the pool. I talked to Nicholas last summer about going to the pool as a family and that was going to happen. I refused to be "drained" anymore. I gave it all to the Lord and finally was at peace. It was going to be okay. Then my cell phone rang. It was Steve who was with Nicholas at the hospital. "Lisa, you need to get here fast. They think Nicholas is having seizures and have rushed him for a CAT scan." If he was seizing it meant he was going downhill. Again, here we go again. I sat there in Target with his cute outfit in my arms and cried. Then I stopped. No, Nicholas would be okay. I am buying him his swimming trunks and taking them to him right now. And I did. I drove to the hospital and set his new swimming outfit out on his bed. I told him he was now ready to come home and go swimming with all of us.

And he did! Nicholas did not have a seizure that day. They are not sure what happened. He came home in June. That picture is of my baby boy the first time he went to the pool. I treasure that picture. We had many trips to the pool that summer but the picture is of his first time. So...that is why I keep that picture up. A reminder of the love of Jesus, the blessing he has given to us.

Sleep study to tonsillectomy

A few weeks ago Nicholas had a sleep study done to check for sleep apnea and to also check his brain waves for seizure activity. The poor guy was miserable. Would you be happy and sleep with all of that connected to you? Heartbreaking!

The good news is that they did not detect any seizure activity. He does have sleep apnea. A somewhat mild case but for Nicholas they do not like a mild case. They said in the average child they would let it go and retest in another year. Since Nicholas is a heart child they cannot ignore it. He had five episodes in a hour (sounds like a lot to me!) and his oxygen went down to 81% at one point. His average when he is asleep is 88. He did average 90-93 oxygen sats which was good for him. Anyway, all of that can put pressure on his heart and lungs. Even though his heart has been repaired we still have to watch for stress on it. Of course his lungs have never been great since his RSV episode two years ago.

So what to do? I am thinking oxygen at night. No not needed right now. Okay then what? We need to take out his tonsils and adenoids. My heart dropped (and of course I was by myself) Down Syndrome children tend to have bigger tongues and smaller airways. Also with his neurological injury he cannot control his airway and secretions like most children. Plus, large tonsils run in Stephen's family. Three strikes on that one!! By taking them out it will create more room for him and hopefully allow him to control his secretions and sleep better. Not 100% and maybe not even 50% better but hopefully better than he is now.

Okay so you are probably thinking that it is just tonsils and adenoids. M and B just went through it. No big deal, right? WRONG!!

These are the main points with having this surgery on Nicholas:

1. He has a low pain tolerance. When he is in pain, he shuts down.

2. This pain could lead to cardiac or respiratory arrest-again..for the 3rd time.

3. Nicholas coughs up his secretions. After surgery it will be too painful therefore he has a high risk of pneumonia.

4. If he becomes too traumatized by the pain from coughing he could potentially not do it again. If he does not cough them up, he will have a higher chance of lung illnesses which could lead to getting a trache.

5. There is a higher chance of him contracting some illness by being in the hospital (H1N1!!!!) from 2-10 days.

The surgery is scheduled for October 28th. I have my days where I just cry, thinking about all that could happen. Dumb, I know, but I am his mommy and I cannot erase the memories of the things that have happened. The times when we thought we had lost him. That scares me.

Then I have my days where I feel a huge peace knowing God is in control. Even in my moments of sadness for what Nicholas again has to go through, I can and do rest in the knowledge that the Lord will never leave my son. He will hold him and protect him through this surgery. Now, would you rather have me holding you through the surgery or the Lord??? Easy answer, isn't it?

It reminds me of the song "Praise you in this storm." Number 2 on our playlist. "Even though my heart is torn, I will praise you in this storm." Lord, even though my heart is torn I praise you. I praise you for every storm you have given us. I praise you for the one coming up in October. These storms have brought us closer to you and closer as a family. It is going to be hard. As a mother my heart aches but we "can do all things through Christ who gives me strength." Philippians 4:13

Poem: The Day I Became a Heart Mother

I love that scar. Nicholas' main "battle wound" as we call it. He has 20 of those battle wounds but that one is his main one. It reminds me of what Nicholas has gone through but mainly it is a daily reminder of the miracles our Lord has done in his life. A reminder of His never ending love. A reminder that "I can do all things through Christ who gives me strength." Philippians 4:13

I asked Stephen to read this poem the other day. With tears in his eyes, he said, "Wow, you wrote this about yourself and Nicholas?" No, I did not write that poem but it does tell of my life and every "heart" mother out there. People ask how my life is with Nicholas, how can we pray....read below and as you do say a prayer for every "heart" child and "heart" family out there.

The Day I Became a Heart Mother

One day my world came crashing down,

I'll never be the same.

They told me that my child 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 him for so long.

I will not give up on this child.

I will listen to your advice.

I will give my child any chance.

No matter what the price.

I will learn all that I need to help my child thrive.

I'll even use that feeding tube.

My child must survive!

Will he need a lot of therapy?

Will he gain the needed weight?

Please God, help me do this.

I will 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 child's bed.

I watch him sleep for quite a while.

I bend down and kiss his 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 his life, and guide us through each day.

My mind says savor each moment he's here,

but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.

From wishing for a good nights sleep, to learning every med.

From wondering, "will he be alright?", to watching him reach out his 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 his beautiful heart).God must have known how much I'd love him (Just as He loved him 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 him (and no other).

I will always embrace that beautiful day.......When I became a "Heart Mother"

- Author Unknown

Thank you Lord for giving me the honor of being a Heart Mother. Most of all, thank you for the blessing of being Nicholas' mommy-a blessing beyond measure-Lisa

Back to school....

These are pictures from the first day of school. Stephen started fifth grade, Megan started second and little B started kindergarten. I cannot believe they are all three in the same school this year. They grow way too fast!