New Pics

My friend Faith did me another generous favor and snapped some new pictures of Ethan. They are beautiful. Ethan was just happy cuz we took the oxygen canula out of his nose for the pics.
I will update later. . . Greg took the skid kids (minus Ethan) to California for Memorial Weekend. Ethan was behaving sooo well that my mom and sister-n-law Sandi told me I had to go join them for a day. They took great care of Ethan and I flew over and spent a day enjoying the Skidmore family and the beach. It was wonderful!

Next Surgery!?*@!

Well, we have been enjoying life at home without the trache. . . Not having to suction constantly is the bomb. It was a little scary for a few days. Ethan did not want to cough and we had a few "bluish" moments. We would have to gag him to get him to cough his secretions out. After a few days the secretions decreased, he got used to coughing, and his cry got louder. . . He has been up a lot at night. We thought he was such a great sleeper, but I think we just didn't hear him half the time because he had no voice with the trache. So sorry bud!
Well at the last appointment we got the news. . .Next surgery, the Glenn, is June 2nd. I wanted to throw up when they walked in and said the date. I knew it was soon, but hearing a date makes it so real. I am not ready to see Ethan like that again. Not that I think any parent is ever ready to see their child's life hanging by a thread. But is must be done. I am just praying the lungs cooperate a little better this time. It would be nice to get out in a month instead of two! Keep the prayers coming.
Much love-
Mom

Trache is OUT!

The trache came out at about 9am. He is doing awsome. He is a little scared when he coughs. Its a whole new feeling. The funny thing is he has not needed any oxygen since the trache came out. That would be extra nice if he didn't need that anymore! The docs want to keep him one more night just to be sure everything goes well. I can live with that. I have been humbled by how far he has come in the last few weeks. I keep thinking I am dreaming. Greg and I just look forward to spending the next few weeks at home with him again.
Much love-
Heidi

A Good Day

Ethan did great today. The cath went well. His pressures look good and his shunt does not appear to have narrowed anymore since the initial narrowing. Our cardiologist said that he could be ready for the Glenn (next surgery) anytime. So our surgeon has decided, since Ethan is doing so well, to wait until the first week of June to do the surgery. That will give him more time at home, a better chance at getting his trache out, and more time to grow!!! We are sooooo grateful for this news. WE aren't ready to see him go through another major surgery yet. It has been such a blessing to have him at home. Greg and I continue to marvel at Ethan. He is so precious and we are grateful for every moment we have with him, and our other children. We are also grateful to all of you!

The ENT decided not to come until tomorrow to trial the trache. Ethan was still a bit "out of it" in the late afternoon from the anasthesia. He said he will have a better chance of succeeding if we wait a day. He had been through enough with the cath. I really want the trache out, but after spending time on the heart unit today, I am reminded at how blessed we are just to have Ethan progressing as well as he has been. Our prayers go out to many heart babies and families tonight who are having struggles beyond ours. . . We love you and are praying for you. . .

The Day I Became a Heart Mother

Found this on another heart moms blog. . . As we prepare for another procedure tomorrow I have had many emotions running through my mind. This summarizes them all!

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

The Latest Events for Ethan

Ethan had good appointments this week. His heart and lungs are looking good. His weight gain is much slower than we would like, but coming along. He is a whole 9 pounds 3 ounces. Next Wednesday he will have a cardiac catheterization. They will check the pressures in his heart and lungs, and get a closer look at his shunt. The results of that will determine his next surgery date. Tentatively it will be the end of May. But a final date will be set after the cath.

At the ENT appointment it was determined that Ethan's right vocal chord has complete movement. The left one is still not moving much. But he can do fine with just one vocal chord. (Remeber his chords were paralyzed after the last surgery). The ENT doctor has agreed to let Ethan do a trial period while he is in the hospital next week to see if he can do without the trache. Keep your fingers crossed!!!

Ethan is a great baby. The smiles are coming a little more frequently. He sleeps well at night, however he has decided he likes to be held ALL day. He deserves it! But getting housework done is next to impossible. Thankfully a few friends and family have come over to just hold and rock him for me. It helps me get caught up!

Thanks for your continued love and support. . .
Greg and Heidi

To ALL My Wonderful Friends Out There

I just wanted to express my deep gratitude to the many who continue to touch Ethan's life and make things easier on me and my family. . . So thanks to all the playdaters, meal makers, grocery runners,taxi drivers, flower planters, Sonic delivery girls, gift givers, visitors, letter senders, cleaners, babysitters, prayer givers, advice giving heart moms, and on, and on, and on. We are truly blessed!!!
Love-
The Skidmores

So Mad I Didn't Take A Picture

Oh Cannon. You are a funny boy. . . I am so mad I didn't take a picture.
This morning I got a much needed laugh. I was running behind (me?) to get out the door to Ethan's ENT and Cardiac Appointments. Greg and I had just gotten the older kids off to the bus and we were hustling to gather up all Ethan's equipment and re-bath him after a early morning puke! I went into my bathroom for a minute to brush my teeth and Cannon comes up behind me and says "Mom, why isn't the wotion (lotion) wubbing in?" I turn around and he has a tube of diaper rash cream in one hand and the other hand is vigorously trying to rub the cream in on his forhead and face! It was ALL over him and his hairline. Needless to say he needed to be re-bathed too.
I called for Greg and we got a good laugh. However I was so worried about getting out the door that I didn't take the time to capture the moment on camera. . . I am so mad at myself.

Hanging in there. . .

So a week has really past. We made a whole week at home! I still can't believe it. Although I admit a lot of the time (like in the middle of the night) that it has felt like the longest week ever. But all in all, it has passed quickly. The kids are hanging in there. I was able to attend of few of my kids activities this week (baseball game, tumbling recital, and Mark's b-day party). It was much needed bonding time. It was also much needed for my mental health. Greg also took Gage and Cannon to the Father and Son campout for our church. They loved it.

Greg or I have to always be home with Ethan to do his care. . . which means we don't get to spend too much time together. I appreciate that he is willing to help so much though! Our conversations are quite technical these days. Its about formula mixtures and vomitting, weight gain, labored breathing, oxygen needs, meds, suctioning, how precious he is, etc (and by the way I will be having a huge bonfire to burn the suction machine and humidifier compressor whenever Ethan gets his trache out!!!) Greg has never had a stomach for the medical side of things, but I have been amazed at how well he has taken to it since Ethan has been born.

On Thursday Ethan had to spend the day on the heart unit. Dr. Cleveland had to remove his central line (broviac). It had been in since surgery and these kind usually have to be cut out, so they sedated him. He did very well and we were discharged in the afternoon. Ever since then he has been a little fussy. I think his leg is a bit sore. Tonight he seems to be breathing a bit harder too. Oh how I wish I had a magic wand that could make him feel great and wipe that concerned look off his face.
I also wish that magic wand could give me a full time nanny and a clean house :) Tonight at Mark's b-day party we took pictures with some fellow heart moms and nurses from the unit. I must say. . . It is a club I never wanted to be in, but I wouldn't trade it for the world. They are awsome!


Much love-
Heidi