Monday, December 24, 2007

Christmas Eve, Already?

I can't believe Christmas is tomorrow. It seems that there are days in life that will never come and then before you know it... it is over. I catch myself always looking for things to come and I think I can miss out on a lot by doing this. I hopefully can correct this wasteful habit.
This year Spencer (who is 10), has finally asked me if Santa is real. I am sure he had heard different things at school. I have always told him that I will be honest and that when he is ready, I will tell him the truth, whatever that may be. Before I answered his question, I asked if he would be OK with either answer that he may get. He thought about it for a minute, and then said that he would wait awhile before he wanted to know for sure. I think it is cute that he still wants to believe (and possibly not screw anything up right before Christmas).

Spencer, Gavin, Ethan, and myself have all gotten colds this last week. It started with something Spencer picked up at school, and despite my best efforts have spread throughout the house. Spencer and Gavin have it worse (so far) than Ethan or I do. It is pretty much a hacking cough with a tickly throat and some mild nasal congestion. I've been worried about Ethan. I hope it doesn't develop into something bigger. I've been keeping a close eye on him, checking his oxygen levels more frequently, listening to his lungs with my stethoscope, and watching his eating and sleeping habits more diligently. So far he's been handling it well. I was actually glad when I got sick after Ethan began showing symptoms. I don't know if there is any truth to this, but my theory is while I am breastfeeding, if I get the same sickness as Ethan, my body will produce the specific antibodies needed and hopefully get him feeling better sooner.

We went up to Christmas village in Ogden on Friday night. We had been given clearance by Ethan's Cardiologist to take him out in the cold, but it was that morning that Ethan began getting sick. So needless to say, Ethan stayed in the car with either myself or Tim while the other one saw the lights and Santa Claus. So far, this is the only real family tradition we have at Christmas time. Especially now that we've moved, it is always a treat to visit our old stomping grounds.

To all of you who didn't get Christmas cards from us this year, don't take it personal. Nobody did. I had a late start getting into the Christmas spirit this year and I've never been good at sending out cards in the first place. However, I do appreciate all of the Christmas cards and warm wishes that we've received. It's nice getting something in the mail other than junk or medical bills. I too hope all of you have a very "Merry Christmas" and we pray for health and happiness to you and your families.


Wednesday, December 19, 2007

Cardiology Visit Today

We just returned from Ethan's cardiology appointment. Today we had chest x-rays, an EKG, and had his vital signs checked. Ethan weighed 18lbs and was 27 inches long according to their measurements and his blood pressure was still doing good. Dr. Williams said that Ethan was looking really healthy. His oxygen levels were 88% on room air. The Dr. adjusted some of Ethan's medication doses and took him off of the lasix completely. That is good news for Ethan because that is the one he dislikes the most. It doesn't seem like much, but just removing one medication from our daily routine seems to make a difference. (It doesn't make a whole lot of sense since I am still giving him other meds at the same time, but it really does seem to take a small weight off of my mind.)

I had been worried about taking Ethan out in the cold to go see Christmas lights, but the MD said it would be OK and that Ethan could come with us as a family. We still need to continue to see the Pediatrition regularly but we don't have to go back to Cardiology for 6 months. When he does go back at 14 months old, they will do another echo for the enalapril study that he is in and will also check his tricuspid valve (the valve between his right atrium and ventricle) which has a "mild leak". This is an important valve because if it is leaking too much, it increases the workload of the right (his only) ventricle and will cause it to fail sooner. Dr. Williams wasn't concerned too much about it at this point, but said that it is definitely something that we need to keep an eye on. All in all it was a great appointment and it is always nice to hear from his doctor that he is doing well. Thank you to all of you who have kept us and Ethan in your prayers.


Tuesday, December 18, 2007

Growing Up

I just thought I would post a couple of pictures that show how big Ethan is getting (Gavin also loves getting his picture taken). He is sitting up all by himself now (he can't get into a sitting position all on his own but will stay sitting if you put him that way). And for having his oxygen levels in the mid 80's, I think his coloring looks pretty good. He has a cardiology appointment tomorrow. I will post again after our visit with the doctor. I hope they don't find anything surprising. I don't think they will, I think he is doing really well.

This is just a shot that I was trying to get to show off his 2 new front teeth. He is such a cutie pie! He has such a fun personality. He is so happy and content. He is very good to do things on his own but also loves to be held and played with. We've been doing a lot more tummy time with him to try and get his upper body stronger. In fact, he will scoot on the floor if you give him something solid to push his feet against.

We are so blessed to have him in our family. I don't know why this had never occurred to me before but I had read somewhere that the oldest living child with his condition is only 14 years old (not counting transplants). I think this surprised me because the doctors have always told us the goal was to get him to his teenage years to early 20's before he will need a heart transplant. I guess I never put 2 and 2 together that this really is just a goal and it has only been in the last little while that his heart defect wasn't a complete death sentence. With that being said, it only makes sense that any living survivors wouldn't be very old. So because of this, things really are still developing and we are in uncharted territory. I guess I have always looked at the potential instead of the actual reality. Regardless, he is here with us now....... just like he was meant to be.


Sunday, December 16, 2007

"Heart Mother"

I have been surfing around at different blogs and care pages lately and came across this poem that a mother of a heart baby wrote. However, I don't know who the author is. Also, I did make some slight revisions. I thought it was really special and thought I would share it with you.

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 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".

Thursday, December 13, 2007

Am I That Bad?

I am sitting at the computer looking through my past blog entries and recounting all of the events that have taken place this past year. Gavin is supposed to be taking a nap but instead comes up to me and makes the funniest comment. I guess this was a game that he made up and wanted to play. I asked him what I should do. He proceeded to explain, "I say say NO!" What a bad rap I must have!


Tuesday, December 11, 2007

Funny Little Boys!

These pictures were taken a couple of weeks ago and I finally was able to catch Tim last night to show me how to put them on our new computer. I am not very computer literate. Anyway, I was in the kitchen making dinner one night and Ethan was lying on the bed watching his favorite show. Earlier in the day the older kids had been showing me pictures in a magazine of things that they wanted for Christmas. I went in the bedroom to check on Ethan and he had gotten a hold of the magazine and was having a ball tearing it into shreds. He was smiling and giggling with each rip. Too bad for the magazine. He was being too cute to take it away. That same night I'd heard the game "Guitar Hero" playing in Emily's room. I heard booing and someone playing very poorly. I thought it was Spencer and went into Emily's room to just razz him a little bit. When I got there I was surprised to find Gavin had started up the game and was "playing the guitar". I am so lucky to have such fun and cute little guys!

Monday, December 3, 2007

December 3, 2007

I am feeling guilty about not posting anything this last week. I didn't even do the 5 for Friday's. It has been fairly busy lately so I will just give a brief synopsis to catch up.

Ethan is continuing to do well. He has had a mild stuffy nose but nothing that a bulb syringe can't fix. He also got his 2nd flu and RSV shots last Friday. At that appointment he weighed 17lbs 10oz. That is only 7oz gained since his 1st RSV shot 4 weeks ago. I am not exactly sure what is a normal weight gain at this stage of the game, but I guess I was expecting more. He has been eating pretty well but has also been getting sweaty with some of his feedings. He has a cardiology appointment in a couple of weeks. I am actually excited to go and to make sure that things are still looking OK. I don't know if I will ever find a time where I don't worry about him.

We attended our first Christmas party of the season on Friday. This was for the Gatherum side of the family. Again, Tim volunteered to stay at home with Ethan and so just the older kids and I went. I really enjoyed the visiting and the kids had a great time playing the games and running around with their cousins. Each year we rotate who is in charge of planning and hosting the party and I guess next year it will be my turn. I actually think it will be fun to be in charge of it.

I was talking to Spencer yesterday, and just out of curiosity I was asking him if he couldn't have the #1 thing on his list (which is a NintendoDS) from either Santa or from us, what would his 2nd choice for a gift be? He wouldn't give me an answer and insisted that this was all that he wanted. I kept pressing him and then he finally said, "Mom, I know what you are doing! You just think that a Nintendo costs too much and want me to tell you something else that is cheaper." I just had to laugh. It was cute to see his mind working and see him thinking that he had to stay 1 step ahead of me to protect his beloved Nintendo.

Yesterday was the day of the teeth. Ethan's 2nd bottom tooth finally broke through which was a blessing. This 2nd one seemed to be worse than the 1st one. His gums were really swollen and were very tender. Also, Emily lost her 4th tooth yesterday evening. I was telling Tim that I've never been sentimental about these little teeth when they fall out. But yesterday, I was just looking at her little tooth in my hand and it just took me back to when she was a baby. We would have been living in Texas at the time she got this tooth. I could just remember her sitting in her swing at Betty and Larry's house and the amazing year that we'd spent with them. I then had a little flash forward to when Ethan will be her age losing the tooth that just came through today. I couldn't help but wonder what will have happened between now and then. I wonder if he will still be healthy. If he will be doing "normal" kid things or just doing his best to keep up with Gavin. It is hard to envision what the future holds for our family.

I have been having a hard time getting into the Christmas spirit this year. I think part of it is just not being able to get out of the house much. There is so much going on around me that I am oblivious to. I think I simply need to get motivated enough to get the house clean and then get our Christmas decorations out. But right now, either way, it seems like more work. Bah Humbug!