Friday, June 25, 2010

What a blessing

This isn't a long, thought out post. :-) I am just feeling thankful this morning for the CHD community. Through the internet, God has provided this wonderful network of adult CHDers and parents of CHD kiddos to us. What a blessing this is! At a time in our lives when we don't see or hear much from those who have been close to us, God has brought kids and parents who understand what we are going through, who have walked this path ahead of us, who know the emotional toll it takes, and, praise God, who are willing to step in alongside and give comfort and encouragement!

This is a lonely road...or at least it has the potential to be, but God is faithful. Some of these online folks are even pretty local to us, and I have had the pleasure of meeting them in person and beginning some wonderful new friendships ~ something I need right now. One sweet lady comes and visits with Jethro and I almost every time we are in the hospital, which is wonderful ~ the days get awfully long when we are there.

Anyway, I posted something on Facebook this morning, and a heart mom jumped right in with an, "I know what you're talking about/where you're coming from" comment, and I just felt so blessed. For one, to know that I'm not the only one affected by all that is going on around me the way I am, and two, to know that mom's who I do not know INR, and will likely never meet, care about what is going on in my life because God has brought us together....through this wonderful thing called the internet. :-) I do hope/pray that as I have the opportunity, that I too am a blessing to those that God has brought into my life.

Thursday, June 24, 2010

Why I don't update the blog more often. :-P

(NOTE: I started this post on Tuesday.)

"The heart of man plans his way, but the Lord establishes his steps." Proverbs 16:9

I think this is my new life verse. I even found a beautiful wall hanging with this verse ~ which is now hanging in our bedroom.

So what does that have to do with the blog? Well, I updated yesterday, and the "plan" has changed a couple of times since then. If I was more on top of updating the blog, there would be about 4 posts to each day. :-P

I am so thankful that I know the above verse is true. I am able to just "go with the flow" when it comes to Jethro's care, because ultimately, I know that it's not me or the Dr.s who are guiding the whole thing. We "plan the way", but God is "establishing our steps".

It is so comforting to know that God's got it all under control. If we are in the hospital, I trust that we are because that's where he needs to be. Whether it's because we're going to have an issue with atrial flutter (like when he had his g-tube surgery), or because we need to know that our home oximeter isn't overly reliable (like we found out this time). Some things seem significant, and some not so much, but they are all pieces to the puzzle that is his care.

So, to make up for not being totally "on top" of updating the blog, I did throw in a new picture of Jethro. :-)
Thanks so much for the prayers, they mean everything to us.

Monday, June 21, 2010

And so it begins...

Over the weekend, Jethro's 02 sat rates were not good, even though we continued to up the amount of oxygen that he was getting. He's on 3L now, and most of the regulators only go to 4 ~ just to give you an idea. So yesterday, I talked with Dr. Carl on the phone, and although we had an appt set for Tuesday, he did not want us to wait that long to come in. So, this morning we headed for Spokane and the cardiologists. I packed my bag last night, because I figured if they were having us make a special trip, we wouldn't be coming home.

When we got to the office, they sent us downstairs for a chest x-ray, and then back up to the cardiologists. Dr. Carl came in and looked him over, and said that he was going to admit him (surprise, surprise, surprise!), and that they would do a heart cath this week, and surgery was tentatively scheduled for Friday. They could change their minds about surgery, but we can't continue on with these oxygen sats. As Dr. Carl said, "We've been through too much with this baby to take any chances." AMEN!

He then wanted to know what all Jethro is doing...I told him that he is programming computers ~ but he didn't believe me. :-) Anyway, he is very encouraged by how he is doing. I think he's pretty close to right on for an almost 4 month old. He is very engaging, he smiles, and talks and coos. He tracks with his eyes and will turn his head to follow something that has his interest. I haven't gotten him to laugh or squeal yet, but that will come.

Prayers for Jethro to stay stable until surgery, for wisdom for the Dr.s, and for him to tolerate procedures well would be greatly appreciated!

Sunday, June 20, 2010

The Daddy of our house

A Daddy is someone who loves you unconditionally, who is there for you when you are down, who rejoices with you when you rejoice, who cheers you on when you are striving. A man who lovingly guides and directs, who disciples and when necessary, disciplines.

My children are blessed with such a man.

Thank you sweetie, for all you do. We love and respect you.
Happy Father's Day.

Saturday, June 19, 2010

A Gem of a Find

Today was the annual city-wide yard sale in Plummer. I picked up several things for the baby and the little boys, but my find of the day were these...
 A lovely blouse in pristine condition. Beautiful lace around the collar and down the front. There is also lace at the cuffs. There is ruching (?) across the front of the blouse.

Here are some close-ups from this blouse.

Here is the second blouse. It has some damage around the bottom from the side seam to side seam around the front. The tag says Geisha waist.

Here are the close-ups of this blouse. It is so very lovely. I wish it were a wearable size!

This is a beautiful, simple chemise. It is actually a size that could be worn.
Here is a close up of the embroidery on the chemise.

Although these are frail antiques, they really are in wonderful shape. I also got a couple other things of the same era, but I have no idea what they are. :-) And, all for $3!

I truly have no idea what I'm going to do with them, but they are so very lovely, I couldn't resist. Our church is celebrating it's 100th Anniversary next month, and I will probably put them on display for that. Other than that, they will probably go into storage until I once again have a sewing room.

Sunday, June 13, 2010

He Never Lets Go

Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know You are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?

Oh no, You never let go through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth


Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

(Chorus 2x)
You never Let Go by Beth and Matt Redman

We sang this song in church this morning ~ I sang it through tears. Tears of thankfulness. I am *so* very thankful that I am walking this journey with Jethro as a child of God. We are walking through the valley of the shadow of death, and yet, I can, I will praise Him who leads us.

Jethro's heart is in God's hands. He has a heart defect, but it is not 'defective', it is just as God created it to be. God formed Jethro's heart just as carefully as He formed yours or mine, He just formed it different from "normal". God designed Jethro's little heart to glorify Him and it has, it does. I am continually in awe of God's creation when I think about Jethro and his heart. God's design is perfect, and when it's not, He has blessed us with the knowledge and technology to be able to bypass it and make it work anyway. It is a beautiful thing.

I get to see up close and personal how God sustains my son's life. How He guides the surgeon's hands, how He gives wisdom and insight to Jethro's cardiologists, how He gives compassion and grace to the nurses that care for Him, how He gently carries us and calms us and enables us to trust in Him and not worry or fear.

I will fear no evil 
For my God is with me

This is the God of the universe ~ creator of Heaven and Earth. This is Jehovah God, all powerful, all knowing, ever present ~ sovereign. And He has chosen me. He has placed my feet upon a hard and narrow path, but He is gently leading me and when I cannot walk, He picks me up and carries me.

And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You

I lift my hands, I lift my heart, I lift my voice all in praise of Jehovah God, my Daddy who deserves the highest praise. I give all thanks to Him.

Friday, June 11, 2010

Happy to be Home

We're home! Jethro's sats have continued to be all over the place. From the high 90's ~ very unusual for him, clear down into the 50's, even on oxygen. However, they were not doing anything for him at the hospital that we can't do here at home, so today they sent us home. :-) He is on oxygen, and we will have to monitor his sats more closely than we have been, but it's all worth it to be here with the rest of the family.

The older Jethro gets, the more I love and appreciate this sweet place called: HOME.

Wednesday, June 9, 2010

Back in the Hospital

Tomorrow was to be a long, full day of Dr. appointments. Not anymore. :-/ Monday started three days of low sats for Jethro...yesterday I didn't get real good readings with the oximeter, but he was very mottled looking. This morning, he was pretty fussy when he woke up and very dusky looking. When I put the oximeter on him, his sats were in the low 60's and even down to 58 (you and I hang out around 100). So, we put him on oxygen and I called the cardiologists office. They weren't open yet, but I wasn't overly concerned, so I just left a message at the nurses desk, knowing they would listen to it when they got in.

Sure enough, I received a call back from the nurse, saying that Dr. Carl wanted me to bring him in to be seen. So, we got our stuff together and left for Spokane. They just had us go through the ER, and Dr. Burg, who is on call, came down to see us. She was concerned that Jethro is possibly outgrowing his shunt, which would mean surgery, possibly as soon as next week. So, she admitted him to the PICU to be watched for a couple of days.

After we got up to the PICU, they did an extensive echo, and the shunt looks good. We are not sure why his sats are dipping like they are, but we are at the hospital for the next few days, so they can keep an eye on him and try to figure out what's going on.

Once again, I have to say that I love our cardiologists! They are what I consider appropriately concerned about things. They are all for pushing Jethro to see what he will do, but they are also cautious with him. I have learned that if they are not concerned about something, then I likely do not need to be either, but if they are concerned...I definitely am! :-)

So, a prayer request would be that if something is wrong, that it would show itself while we are here at the hospital. Of course, my preference would be that nothing is wrong! I told Mike that I think he's just lazy...he heard me tell somebody that the physical therapist was coming today, and he didn't want to work..."um....I think I can't saturate very well, Mom I better go to the Dr.s!" :-P