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!

Beach trip 2009

We are still here!!! Sorry for the lack of blog updates. Things have been busy. I was talking to a friend at church today about the blog(Lori-see I told you I would mention your name) and I realized it has been a while. I don't think to write about everyday happenings so I am sure many of you wonder how we are doing.

We are doing good! We just got back from the beach and had a great time. It was good to get away and enjoy just the six of us together-alone. Below are pictures of our trip. We've got decisions to make about Nicholas but I will save that for another blog!

Me and my B.

Check out Nicholas' hair. I think his hair went into shock when he touched the water.

Brandon fell asleep inside his pillow case.

Megan and Brandon's personalities are evident in this picture. Take a guess by their facial expression and poses! Miss Princess and class clown!

The sun wore him out.

Nicholas enjoys the pool. He kept smiling but we couldn't get it on camera.

Okay..I know I have four kids but when I look at the picture-WOW! I have FOUR kids. It doesn't seem like a lot until I saw the picture.

The HIPPO! A massive, bouncy, water slide. Yes, I did go on it too!

Sorry, couldn't resist taking this picture. It is on the bathroom of our favorite restaurant-The Provision Company.

Nice and relaxed..isn't he adorable?

I love Elmo!

Nicholas responds to the color red so we use a lot of Elmo toys when working with him. He gets SO excited when he sees Elmo. Below is a video of Nicholas responding to his Elmo toy. He tries so hard to talk to it-it's very cute. At one point, Stephen walked in the house and screamed "hello." You can see Nicholas lose focus and turn towards Stephen's voice.

We love days like that. When Nicholas is feeling relaxed and good, he makes so much progress. Those are rare days but oh what a joy when it happens!! Well, any day is a joy with Nicholas. Let's just say those days are filled with extra joy!

Off to camp we go........

On Monday the 3rd though 5th grades kids went to Camp KidJam at Wake Forest University. Steve went as a leader and little Stephen went as a camper. This is only the second time I have ever been away from little Stephen. I miss my first born baby!! Today is Wednesday and I am SO ready for the Stephen's to come home!!! Hmm...what is wrong with that picture??? Oh, yeah that would be Claudia not me!!! Oh well, she is a second mom to the kids anyway..

Last minute instructions from Christy. Is that a grin or grimace Stephen??

Saying goodbye to little brother with a threat to keep their room clean while he is gone.

Saying goodbye to other little brother. (Yes, I am crying!!)

Time to load up......

Pastor Don greeting all of the kids.

Pastor Don getting ready to pray for the campers.

Christy laughing at me for snapping so many pictures.

Hmm...would you trust your kids with that bunch???

Seriously though, that is one group of special people. People that love the Lord and want to show children all about that love. We are so blessed to have such an amazing group of volunteers that serve with our children. Thank you from the bottom of my heart for all you do!!!

Till we meet again...

A few days ago we headed back to Brenner but this time not for Nicholas. This time it was to say goodbye to a wonderful, wonderful man. Last Sunday morning, before we left for church, we found out that one of Nicholas' PICU nurses died suddenly from a heart attack. The Lord had called him home. It was obviously quite a shock and still seems so unreal to us.

David was an awesome nurse and man. I remember the first time we had David as a nurse. Nicholas was just off ECMO and Stephen and I were VERY picky about who kept him at night. At that point, parents were not allowed to stay in the rooms at night in the PICU. I wanted to make sure that any nurse that kept him was a mother type person who would nurture Nicholas in my absence. It was SO hard to leave him especially after we had almost lost him. In walks David. Okay...this is a man not a woman. I wanted a mother figure-loving, nurturing, etc. He was quiet, shy and would not look at us in the face. Great! I am NOT leaving. David walks first to Nicholas. Rubs his head and says "Hey little man. No coding tonight, right? We are going to behave and have fun." Brownie points!! Then he leaves. Uh..excuse me, where are you going? He comes back with treats and coloring books for all of the kids. Then proceeds to ask us what we need. David became one of our new favorite nurses. Our big, quiet, shy nurse.

David's love for all children radiated through his work. You could not help but love him. His quiet and shy ways were what made him so endearing. The picture below was on David's locker at work. That was his piece of Heaven on earth. He now has this for eternity.

David, we love you and will miss you so much. I can't quite believe you are gone. While we will cry and mourn over our loss we know you are at peace in the perfect place. I know all of the angel babies that you loved and cared for were waiting for you at the gates of Heaven. Thank you David for everything. Until we meet again.......

Please pray for the staff at Brenner. This is obviously a huge loss for them. Many of you know of our love and appreciation for the staff there. We not only hurt for losing David but we also hurt to see them in pain. It takes special, special people to do what they do and now they must do this and deal with the loss of David.

Watch out!!!

Megan has never been interested in riding a bike. Stephen D always rode and learn to ride without training wheels at the age of five. Well, Megan decided that this summer she would ride her bike and take the training wheels off all in one shot. Being as stubborn as her mom... she did it!!! All within a couple of tries. As you will see she still needs to work on braking!!!