Check-Up on February 19th

Yesterday we went back to Children's Hospital for a check-up. The best news was that the chest x-ray showed no fluid accumulation. Jesse has also gained about a 1/2 pound in the last week. He did have a stitch near the top of his incision that never came out and had become infected, so the doctor had to cut it out, but Jesse did very well. He is on antibiotics for 5 days. We don't have to go back to Children's again until March 20th and Jesse can go back on his normal diet March 6th. Well, I have to go get the kids up and ready for a school day. I'll try to periodically update what is going on with Jesse.

Love,
Kristan

Happy Valentine's Day!

We made it home yesterday and wanted to wish everyone a Happy Valentine's Day!

GOING HOME!!!

It is Wednesday, February 13th and Jesse is discharged! Chad is on his way and we will be heading home this afternoon. Praise God for the miracles he has done in our lives. We are so excited to be going home.

Love,
Kristan

Tuesday, February 12

Jesse's chest x-ray was great today. Last night Jesse's heart rate was fast, his oxygen was lower and he had a low fever, but tonight he is back to normal and his oxygen is great! They did blood tests that did not show any infection, and checked his potassium which was perfect. They cut back his Lasix to twice/day. So we will have a chest x-ray in the morning and will go home either tomorrow or Thursday if all continues well.

Love,
Kristan

Maybe Thursday???

Today the doctors said we might be able to come home on Thursday. They are not doing a chest x-ray until tomorrow. Jesse's oxygen sats have been stable. They turned down the oxygen to 1/4 liter, so his sats are a little lower, but they just want to keep him above 90. They are discontinuing 1 of the 3 diuretics today, and maybe weaning back on the other 2 so they want to watch him for a couple days to see how he does on that. He has been eating and sleeping well, and rolling "all over". Last night while we all went to dinner the nurses weren't able to leave him in his crib because he rolled so much and takes out his oxygen. But I think they enjoyed getting the chance to hold him and had him out at the nurses station when we returned. I have enjoyed getting to know a few of the nurses pretty well and am more comfortable leaving for short periods of time.

Chad and the boys will be heading back home this afternoon, so hopefully the next trip here will be to pick us up for the trip home!

Love,
Kristan

Sunday, February 10th - ONE MONTH

Well, we have been at Children's Hospital for one month now. It is hard to believe. Sometimes it feels like "forever" and sometimes I can't believe it has already been that long. Yesterday we had some issues with Jesse's PICC line. Since he had so little medication running through it, the line clogged. The nurses spent a few hours working on it and managed to get one port working (there are 2). So they were able to continue the Octreotide until today as planned. It was shut off a couple hours ago, but they still have fluid running through the line in case they need to start meds again. Jesse is doing great eating and his oxygen sats are good. He had a chest x-ray this morning and will have one tomorrow to see if any fluid starts accmulating. He had a great night last night - had his last bottle around 7:00pm, fell asleep around 9:00pm and didn't wake up until 5:00am! He is now drinking between 2-4 ounces each feeding with just a little spitting up.

Chad called and is on his way with the boys for a visit. I'm excited to see everyone again!

Love,
Kristan

For you, O LORD, have made me glad by your work;
at the works of your hands I sing for joy. (Psalm 92:4)

Pictures

Here are a few pictures of Jesse and the boys over the last week. He seems to be growing. His weight is basically the same as when we first came to the hospital - now 12.2 pounds. He ate well through the night and this morning!!!

Kristan

Thursday, February 7th Update

Today Jesse got his first bottles of formula again. Unfortunately it was too much for his stomach and he threw both of them up this morning. So through the afternoon I have been giving him small amounts of Pedialyte and Portagen. From 1:30-5:30 he has now kept down 1 1/2 ounces of Pedialyte and just over 1 ounce of Portagen. I'm happy he has kept it down and he does seem a little happier. He was very tired and slept most of the day. But, he needs to drink a lot more. I think the doctors wanted him to drink 15 or 18 ounces of Portagen per day! They cut the TPN in half and I think are planning to turn it off tonight. But then he would probably have to be on IV fluids until he is drinking enough. Also the blood tests this morning showed his hematocrit was low (30). So he will get some iron tonight. I hope that doesn't upset his stomach. But if it goes much lower I think the next option is a blood tranfusion. The chest x-ray today looked good, and now he will be getting one everyday again to make sure there is no reaccumulation of fluid. Keep praying for this process as we transition back to eating again.

Love,
Kristan

Wednesday, February 6 Update

Collin spent last night here at the hospital and then all the boys were here for lunch today. We got to play a while in the playroom. Then the Bromptons came for a visit and took the boys home to Crook. Jesse and I walked downstairs to see them go. It was hard being left behind. I really hope we are able to go home next week.

Jesse will start on Portagen formula sometime tomorrow. Then if that goes well with no chest drainage, they will discontinue the Octreotide on Sunday. Then we will pray that the drainage doesn't resume and we would be able to go home sometime next week! If the drainage comes back I think we will be looking at surgical options (Dr. Mitchell advised a procedure called "pleurodesis".)

Thank you everyone for all of the cards, e-mails, and packages!

Love,
Kristan

"New" Laptop

I am posting from our room on my "new" laptop - a wonderful surprise that arrived in the mail today. Thanks Kim and Bill!!! It is one of their old computers and is missing a few keys, but has a wireless internet connection that is working great! Now I have no excuse for not keeping everyone up to date.

I have enjoyed my days with the boys. Samuel and Chad stayed Sunday afternoon. Matthew stayed Monday, and ended up spending the night because of the slick roads. And Collin is here today, and spending the night because Matthew got to... We have had fun playing lots of games and getting ice cream at the coffee shop. I got to talk with boys about what they have been doing in school, and review a little of their work. I'll miss them when they go back home tomorrow.

Jesse continues to do well, mostly just fusses when he gets hungry. I can't wait until I can feed him all he wants again. Pedialyte isn't very satisfying so he wants to eat very often. I am thankful that he is sleeping all night!!!

Love,
Kristan

The Lord looks on the HEART

While I was working on making the video for Jesse, I was reading this passage about King David's father (Jesse) in the Bible. I was overcome when I saw this famous verse: For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart.

Isn't that written just for Jesse?!

Many people may judge Jesse by his outward appearance, but God looks straight at his heart. And, isn't it soo cool that it says HEART, not "character" or "behavior." God has given Jesse both a physical heart and a spiritual heart. I pray that He will be glorified in healing Jesse's physical heart, as well as giving him a heart that is fully devoted to God.

We love you, Jesse. I'm praying that you'll be home for Valentine's Day - our little heart baby ;0

Aunt Kim

1 Samuel 16:6-13

"When they came, he [Samuel] looked on Eliab and thought, "Surely the LORD’s anointed is before him." But the LORD said to Samuel, "Do not look on his appearance or on the height of his stature, because I have rejected him. For the LORD sees not as man sees: man looks on the outward appearance, but the LORD looks on the heart."

Then Jesse called Abinadab and made him pass before Samuel. And he said, "Neither has the LORD chosen this one." Then Jesse made Shammah pass by. And he said, "Neither has the LORD chosen this one." And Jesse made seven of his sons pass before Samuel. And Samuel said to Jesse, "The LORD has not chosen these."

Then Samuel said to Jesse, "Are all your sons here?" And he said, "There remains yet the youngest, but behold, he is keeping the sheep." And Samuel said to Jesse, "Send and get him, for we will not sit down till he comes here." And he sent and brought him in. Now he was ruddy and had beautiful eyes and was handsome. And the LORD said, "Arise, anoint him, for this is he." Then Samuel took the horn of oil and anointed him in the midst of his brothers. And the Spirit of the LORD rushed upon David from that day forward. And Samuel rose up and went to Ramah."

Welcome to Siberia!

Upon finding out that Jesse had Down Syndrome, I was given a story called “Welcome to Holland.” I’d encourage you to read it at – http://www.ndsccenter.org/resources/package1.php The author had a child with Down Syndrome and she compares her journey as a mother to a child with special needs to taking a trip to Holland when you’re expecting to go to Italy.

I thought I was adjusting pretty well to life in Holland and was enjoying all the blessings that were found there. Then the doctors scheduled a “week-long trip” to Siberia, a place that no one wants to go. Now, three weeks have gone by, and the planes leaving Siberia keep leaving without me.

Siberia is a bleak, cold and lonely place. There are moments when the sun comes out, but then a new blizzard hits. I have found, though, that even in this cold and dreary land, God is here.

Psalm 139:7-12
“Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, "Surely the darkness shall cover me,
and the light about me be night,"
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.

I think God wants me at the point where I can accept that I may have to take up residence in Siberia. He wants me to trust Him, no matter where He takes me. He wants me to know that He is with me, no matter where I am.

Ten days before Jesse’s surgery, I shared my testimony with my church. After sharing how I came to know Christ as my Savior, I concluded that God gives us more than we can bear to make us rely on Him. I compared my experiences to Paul’s in his letter to the Corinthians.

2 Corinthians 1:8b-10 “For we were so utterly burdened beyond our strength that we despaired of life itself. Indeed, we felt that we had received the sentence of death. But that was to make us rely not on ourselves but on God who raises the dead. He delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will deliver us again.”

Little did I know how much more difficult life was about to become. In the last few weeks, I have repeatedly felt there is absolutely no way I can handle any more. Then I realize that I’m feeling that way because I’m trying to do it in my own strength again.

Philippians 4:12-13 “I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through Him who strengthens me.”

Unfortunately for me, I’m not a very good student and God has to keep teaching me this secret over and over again.

Another lesson God is teaching me right now is that my faith needs to be active. When He tells me “fear not” (Isaiah 41:10), or take up His yoke (Matthew 11:28-30), or wait for Him (Lamentations 3:25), or trust Him (Isaiah 30:15), these are active commands that don’t just happen on their own. I have to choose to do them and God will give me the strength to obey.

Earlier today I was reminded of the story of Mary and Martha in Luke 10. I hope I will not be anxious and troubled like Martha by all of these burdens that are too much for me to bear. I pray that instead I would be like Mary, choosing the good portion and sitting at the feet of Jesus – wherever God takes me – whether it be Italy or Holland or Siberia.

Whether you find yourself in Italy or Holland or Siberia, may the LORD make his face to shine upon you and be gracious to you,
Kristan

P.S. No new blizzards today. Jesse continues to do very well. Thank you for your prayers!


Sitting at the Feet of Jesus
by J. H. and Asa Hull

Sitting at the feet of Jesus,
Oh, what words I hear Him say!
Happy place! so near, so precious!
May it find me there each day;
Sitting at the feet of Jesus,
I would look upon the past;
For His love has been so gracious,
It has won my heart at last.

Sitting at the feet of Jesus,
Where can mortal be more blest?
There I lay my sins and sorrows,
And, when weary, find sweet rest;
Sitting at the feet of Jesus,
There I love to weep and pray;
While I from His fullness gather
Grace and comfort every day.

Bless me, O my Savior, bless me,
As I sit low at Thy feet;
Oh, look down in love upon me,
Let me see Thy face so sweet;
Give me, Lord, the mind of Jesus,
Keep me holy as He is;
May I prove I’ve been with Jesus,
Who is all my righteousness.