Monday, March 29, 2010

Music to My Ears

What would be music to a heart Mama's ears???

How about, "This guy is getting boring." "He's not very 'intensive'". :-) :-) :-D

We like to hear things like that! UPDATE: Wow, I don't even have this posted yet, and one of the nurses just came in and told me that we will be moving to a new room, in the step-down unit. :-O **Thank you, Jesus!**

Jethro did not tolerate milk very well. :-( I told the Dr. it's because it had been frozen. Who wants frozen food, when you could have fresh!?!? ;-) His little gut just has not had to work and digest anything, so they switched him back to Pedialyte, and now he has progressed to 1/2 strength pre-digested (can you say, YUCK??) formula. They will slowly get him to full strength, and then hopefully his gut will be developed enough that we can move on to Mama milk. They are however, going to bring in the speech therapy folks and start working with him on eating. This is all so exciting!!

It all means that we are moving towards home!

Oh, and what else sounds like a sweet melody? Try, "The clot is getting smaller and is about 1/2 the size it was!" PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!

So, we have lots of praises today.

We also have a few prayer requests:
  • One of Will's closest friends was killed in a car wreck yesterday morning. Please pray for Alex's family as they grieve the loss of their son/brother. Pray also for Will and his other friends. This is a pretty close-knit group of young people and they are deeply feeling the loss.
  • Ezra was sick all last week, and now Kathleen is sick. Not realizing she was about to be ill, we brought her to town to spend the night with us. So, she was around Jethro, and me. Please pray for Kathleen to get better, but also that Jethro and I escape being ill ~ Jethro especially.
  • For Jethro to tolerate his feeds well.
  • That Jethro would be able to eat orally, and that he would pick up on it quickly. 
  • For the clot to continue to dissolve and get smaller.
  • We are also on the hunt for a rental, and waiting to hear from the insurance what they think should happen with the house. Please pray for the provision of a temporary home, and direction in what to do building-wise for our permanent home.

Friday, March 26, 2010

1 Month Old!!

 Jethro chewing on his cannula

Today is a pretty exciting day. Jethro is one month old...not bad for a baby they didn't expect to live a week, and that had to be resusitated when he was born. This little guy definitely has some spunk! :-)

Progress is being made, slowly, but surely. Today he is off the antibiotics for the NEC, they are giving him more FFP (Frozen Fresh Plasma) to help with dissolving the blood clot (which is getting smaller), and they are talking about pulling the femoral line that they put in day before yesterday. Today or tomorrow ~ tomorrow I think, they will begin starting to feed him again. Please pray that feeding goes well, and that his tummy can tolerate it. If he doesn't do well eating ~ nursing or taking a bottle ~ they will put a g-tube in. This would not be the end of the world, but it is something we would like to avoid.
 Still no real news on the house. We are still waiting on the insurance to decide if they think we should fix it or rebuild...they have a formula. :-) At this point we are looking for a rental, possibly or preferably between home and Spokane, so that we can be together, but I can easily/fairly quickly get into the hospital, and split my days between Jethro and the rest of the family.

Ezra has spent the week sick. Will took him to the dr. this morning, and they believe that he has a bacterial infection and his lungs are congested. They did test him for RSV, although they didn't think that was what he has. He is one sick little boy though, not being able to keep anything down. :-( Please pray for his health, and that of the rest of the clan...including Grammie and Pak. Grammie is a treasure, watching after all the kids and being up with Ezra during the night.

God is doing amazing things for our family and providing so abundantly ~ in everything from the small day-to-day needs to big ticket items for Jethro's benefit auction. We are so thankful to Him and to all of you who are truly being the hands of God to our family right now. Thank you!

Thursday, March 18, 2010

Trial by Fire

As many of you will already know, our house burnt yesterday. This was a shocker, and pretty devastating when we got the news. I just thought, "Lord, what are You doing? I can't take much more!" By afternoon and after a lot of tears, I was beginning to think, "Lord, what are You up to?" (In a much more expectant and hopeful way) Perhaps because we are dealing with life and death issues with Jethro, perhaps because none of the children were in danger, perhaps because there may be some salvageable things from the house, perhaps because of all those things, I am on a pretty even keel as far as the loss of the house goes. Don't misunderstand me, I am grieving the loss of our home...and the precious things within it ~ things that have been handed down through the family, things that cannot be replaced, but in the grand scheme of things, they are just that, things. I am confident that God will provide for us. I do not know how exactly, but I know He will.

The folks in our community are already showing us an outpouring of love and care, and we are so deeply grateful ~ we just don't know how we need help at the moment. Having never gone through anything like this, we are still trying to get our bearings and figure out what the next step is.

The kids are doing okay. Kathleen was heart-broken over the loss of her birds, but I just let her cry until she was done. It's hard when you're nine, and your pets die in a fire. Thankfully, the little boys are too little to really comprehend what's going on.

Jethro is doing well for the most part. They did MRI's yesterday and today and basically took pictures of his entire body, looking for clots or evidence of strokes. The only clot they found was the one they knew he had in his heart. They did however, find a bleed on his brain. This could complicate how they are going to deal with the clot. They will do another CT scan tomorrow to see if the bleed has grown. If it has, they will have to stop giving him blood thinners (which they have been using to try to reduce the clot), and he will likely have to have another open heart surgery to remove the clot.

Our prayer requests would be:
  • That the bleed has not grown and the clot has reduced in size. Negating the need for another surgery so soon after the first.
  • There are some things possibly happening as far as the house is concerned. Pray that God would make the way clear before us. We do not want to push or make assumptions, we just want to stay out of the way and let God do what He will do.
  • Please pray for the other kids. Losing your home is a pretty devastating thing ~ especially when you've been looking forward to the day everyone will be home together. Now, by the time we have a home again, both Levi and Will will be out of it and gone. My Mama's heart might need some prayer in that area as well.
We praise God for:
  • His provision and protection over our family. It is very sobering to think that that might have happened when there were children at home. I am sooo thankful that I didn't have to worry about the safety of any of them, while wondering if the house was burning to the ground.
  • Jethro doing as well as he is. Even with the setbacks, in the grand scheme of things, Jethro is recovering quite well. Not bad for a baby who wasn't supposed to make it very long!
  • 3 precious, beautiful weeks with Jethro. I can't believe he's 3 weeks old already, and everyday with him is truly a miracle.
  • precious items that weren't lost in the fire. God protected Tucker's baby book, and most of the other photo albums. Some of the heirloom rings I have and my wedding set were spared even though they were in the heat of the fire.
Once again, thank you for all your prayers...they are what keep us going!

Tuesday, March 16, 2010

Please Pray

Jethro had a long weekend. Friday they stopped the morphine and pulled his vent tube. Yay!! However, over the weekend it became apparent that Jethro was going through withdrawals. :-( He was awake, almost the entire weekend...including at night, and he looked uncomfortable almost continually. The only time he slept was when I was holding him.

Yesterday, he had some rhythm problems with his heart. His heart rate was over 200, his blood pressure was rising, and his oxygen sats were dropping. This is not totally unexpected. They not only cut into his heart, but took some of the tissue out, so the electrical system of the heart has been disrupted. Additionally, one of the symptoms of Ebstein's is also arrhythmia problems, because the right atrium is adversely affected and it is that part of your heart that regulates your heart rhythm. So, they ended up putting him on a medication to regulate his heart rhythm. They also decided to put him on methadone, to help him with the withdrawal symptoms.

He has also been periodically spitting up some greenish stuff. The nutritionist thought it was likely bile, because the feeding tube goes directly into his small intestine, so there is nothing in his stomach to throw up. But, this morning the cardiologist didn't think he was hearing much if any gut sounds...although there was evidence that his gut was working. However, the Dr. felt that it would be a good idea to have an x-ray and ultrasound of Jethro's gut. This evening, the peds intensivist told us that they saw air on Jethro's liver. This is not normal, and has them concerned that he is developing Necrotizing Enterocolitis or NEC. For a real explanation, click on the name of the disease. They will stop feeding him Mama's milk and start him on triple antibiotics and they will keep a close eye on his gut with x-rays.

So, our prayer requests are:
  • That it is NOT NEC.
  • If it is NEC, that it would respond well and quickly to the antibiotics.
  • For Jethro to get through his withdrawals well. It is difficult to watch a baby go through this. :-(
  • For his heart rhythm problems to settle down. The meds they have him on are not a long-term solution. They have side effects that make them undesirable for long term use.
  • For God's healing touch on Jethro.
  • We are likely looking at 2-3 weeks before we can go home. Our other children ~ especially the younger set ~ are missing and needing us as well. My Mama's heart is heavy with this separation, but driving back and forth is just not an option right now. Please pray that God would bring things together so that we can be together as a family again soon.

Saturday, March 13, 2010

Heaven on Earth

Last night, on his 2 week birthday, I finally got to hold my sweet baby boy. I don't know a lot about Heaven, but I know it will be glorious, and that was how last night felt. Glorious. 2 sweet, blissful hours of holding my son, singing to him, thanking Jesus that He had preserved this small child and sustained him through so much.

The David Crowder band has a song, "Glorious". Some of the words are:
"You make everything glorious, You make everything glorious, You make everything glorious, and I am Your's, what does that make me?"

My little boy is truly glorious ~ a miracle and my hero. I praise God for each day He has blessed us with this special little blessing, and the wonderful people He has brought into our lives because of Jethro's heart. We have seen His care and provision in mighty ways this last 2 weeks, and we lift our hands to Him and say, "You are glorious!"

I added a prayer request in the afternoon, to yesterday's post, but I will repeat it here.
**Jethro has developed a clot above the Tricuspid patch. They placed him on blood thinner to try and encourage his body to absorb the clot. He's too little for "clot buster" meds. This morning, the Dr told us that Jethro appears to be at least somewhat resistant to the blood thinner. They don't know why. So, please continue praying that the blood thinner will work, and that his body will just absorb this clot. If it comes loose, it would go to his brain, which would be a very bad thing.

Thanks so much. You are all dear to my heart.

Friday, March 12, 2010

Two Weeks Today

**Edited Friday afternoon to add a prayer request.**

Jethro is 2 weeks old today, and he is doing well! Yesterday, he was doing good enough that we went home for the day and spent it with the other children. What a wonderful time of hugs and kisses and reading stories, and just being together. I miss them terribly.

Yesterday morning, they had taken him off the paralytic drug, and also lightened his sedation level. While we were gone, they pulled the dialysis catheter! This was placed so they could pull excess fluid off his belly post-op, and in case he would need dialysis. They also began a slow feed of Mama's milk!

This morning, Dr. Jensen (cardiologist), told Jethro he was going to have to work today. They are going to continue weaning off the vent (and if all goes well, he might possibly be off it today!), increase his feeding, and pull his pacer wires. My baby is going to look more like a baby, and a little less like a science experiment! His night nurse had also told me that even if the vent is still in, if some of his other paraphenalia is gone, I might be able to hold him tonight! What a lovely 2 week birthday gift that would be!

Jethro was also moving around a little this morning and while Dr. Jensen and I were talking, he opened his eyes! Haven't see those babies since Saturday...what a sight for this tired Mama!

Just about this time 2 weeks ago, we were finding out that Jethro was in trouble and we were going to have to induce and get him here...things were scary and uncertain. Today, things are still uncertain, but there is hope and joy that out-weigh the uncertainty.

Prayer requests:
  • For Jethro's lungs to do their thing, so he can get off the vent.
  • Babies who have been vented often have an aversion to anything in their mouth, making feeding by breast or bottle almost, if not completely impossible. Please pray that Jethro will take to nursing just like his big brothers did!
  • We are starting to have problems with IV lines. Jethro has some burns on one arm caused by the IV, and they had to pull a "new" line last night because of severe bruising ~ and wanting to avoid more burns. He's not done needing IV meds, so we need to have some access. He does still have his central line, but that was placed a week ago, so I don't know how much longer it will last. Please pray that we have some good IV access for as long as it's needed.
  • Finances are more than tight, so prayers for God's provision would be greatly appreciated as well. Those of you who have had extended stays in the hospital know what an extra strain that can put on things.
  • They did an echo on Jethro's heart today. He has a clot forming above the Tricuspid patch. It's not anything that is alarming to the drs, but they are concerned. Jethro is too little for a "clot buster" med, so they are going to give him a blood thinner to try and encourage his body to absorb the clot. If the clot gets loose, it would likely go to his brain, which would not be good. Please pray that it would be absorbed and not cause any problems.
Once again, your prayers mean so much. I know that is why Jethro is doing/has done as well as he is. God is answering your prayers in the affirmative, and I am so thankful, to Him and to you!

Tuesday, March 9, 2010

Holding His Own

WARNING: There is a post-op picture of Jethro ~ I debated about putting it up, but decided at some point it may be of help to another family facing their first open heart surgery. I was able to look at pictures of another baby yesterday, and it just helped to prepare me a bit for what we were going to see.

We were so excited yesterday. Surgery went well, and they were able to close his chest! We didn't think that that was going to happen right away. They prepared us for the chest being left open for 3-7 depending on swelling, etc. But, after taking some of the atrial material out and getting things working again, there was plenty of room for them to go ahead and close! What an encouragement that was.

When we got up to PICU, his oxygen sats were good, and so was his color. He is heavily sedated right now, still intubated, and lots of tubes and wires right now, which is hard to see, but knowing that it's all necessary makes it a little easier.

They showed us a chest x-ray they took shortly after he was born. His heart took up his entire chest cavity. There was NO ROOM for anything else in his chest. Then they showed us a post surgery x-ray, and there were lungs there! It was so exciting to see!

Jethro had a good night, with some fluctuations in his blood pressure, but it responded well to a change in medication. We talked with the peds intensivist this morning and she was very happy with how well he is doing. It'll be good to talk with the cardiologist and see how she thinks he's doing.

We are still in the critical time period, post-op, so please, please keep praying!

Monday, March 8, 2010

Surgery Monday

3:45 pm ~ Praise the Lord! Jethro is out of surgery, and in the PICU. We're just waiting now for them to get him settled in so that we can go see him. Dr. Worrall said that all went well. The Tricuspid Valve was so badly mal-formed that there was no way to repair it, which was what they believed to be the case from the echos. So they did the first surgery in a 3 surgery "series" to make his heart into a single ventricle heart. I am so thankful that the surgery is over, but the next 24 hours will be critical. I know the reason it all went so well is the number of prayers that have been said on Jethro's behalf. THANK YOU!! Praise God from Whom ALL Blessings Flow!!!

12:35 pm ~ Just got another update: Jethro is off the bypass, they are doing final clean-up and will watch him for another hour or so before surgery is "over".

11:45 am ~ They started to take Jethro off the bypass, but saw some bleeders, so they put him back on so that they can fix those. However, while they were taking him off, his heart was beating good!

10:50 am ~ Dr. Burg, our cardiologist, came in and talked with us. The surgery is about 1/2 way done. They have the shunt placed, and the valves closed off, the atrial material removed. Now they will be finishing off those things, and begin to take him off the bypass, which can be tricky. Please keep up the prayers!

9:43 am ~ One hour down. Jethro is now on bypass and surgery is going well.

8:23 am ~ The call just has begun.

Today's the big day. It's 7:50, and we took him and left him in the OR about 45 minutes ago. Talk about hard. It's hard to process. He looks so healthy, and yet his heart is bad. After surgery he will look terrible, but his heart will be better. We took pictures ~ I'll try and get some posted in a bit. I wanted to get some last pictures of him without any scars. We probably have another 1/2 hour or 45 minutes before surgery actually begins. They told us it would take and hour and a half or a little longer to get him prepped for surgery.

This morning, all his numbers looked great, and he had a good night. He had already had some morphine by the time we got to the NICU, so he didn't wake up for us, but it was still wonderful to hold his hand and kiss him.

We just finished breakfast, so while I'm doing this, Mike and his brother were going to go clear our stuff out of the Ronald McDonald room upstairs, and then we'll go to the NICU and pick up Jethro's things, then to the waiting wait.

Thank you so much for your prayers.

Saturday, March 6, 2010


"For this child I prayed, and the Lord has granted me my petition that I made to him. Therefore I have lent him to the Lord. As long as he lives, he is lent to the Lord."
1 Sam. 1:27-28

Wednesday was Levi's 18th birthday. I can't believe he's 18!! So, we decided that we would have everyone come up to the hospital and have a birthday party in the family waiting room outside the NICU and to have Jethro dedicated as well. It is important to us that however long the Lord has granted Jethro to live, that his life glorify the Lord, and so the reason to dedicate this dear child.

Our dear friends, Brian, Julianne, and John Primer came up (it was Julianne's birthday as well), and our pastor and his wife, Dave and Debby. Before we got around to going in to dedicate Jethro, another pastor friend and his wife showed up to visit, Randy and Marie. So, when we went in, we had about 20 people ~ including Grammie and Levi's boss, Jerry (who also happens to be a good family friend).

What a precious time we had, 3 pastors praying over our precious, fragile son...that we would have the opportunity to raise him up in the fear and admonition of the Lord, that the Lord would reach down and touch his body and heal him, that we would walk through His will in a way that glorifies Him. They anointed him with oil, and then Mike and Will also prayed. It was definitely a "holy goosebump" time together.

And then there was the paparazzi. Somebody, who will remain nameless (Daddy!), gave Josiah the camera. So, while the men are praying, and the children are crying, Josiah (almost 4) is busy clicking away (click/flash, click/flash, click/flash, click/flash), taking pictures...mostly of everyone's feet. However, like any good paparazzi that goes out and wastes rolls of film, he did get some clear, usable pictures. And provided some levity to the day.

Earlier in the day, my dear friends, Tiff and Dae, had showed up with tea ~ complete with china and a table cloth. Dan and Jan had stopped by to visit as well, so Jan, Tiff, Dae, and I had all sat down and had tea and visited. What a lovely bunch of women that God has surrounded me with! They know what TLC is all about!

Friday, March 5, 2010

Surgery Monday

So sorry I haven't been able to update sooner! But, I now have my laptop back, and hopefully, it's fixed and will behave itself. :-)

We met with the cardiac surgeon yesterday. We really liked him, he was very straight-forward, yet compassionate. He talked to us about 2 different surgical options. One is a Tricuspid Valve fix, which Jethro really isn't a candidate for, because of the severity of his defect. Just to give you an idea of how rare Ebstein's is, the "big" studies on it involved 20 patients over 20 years. :-/ Doesn't really make for lots of information. And within that rarity, Jethro is almost in a class by himself because of the severity of his defect. His defect is so severe, it really is incompatible with life. However, surgery will give him a chance.

We told the surgeon that we don't expect him to perform a miracle, nor do we expect that Jethro's heart will be perfect ~ who of us has a perfectly functioning body??? Anyone? Well...Levi says he has a perfectly functioning body, but most of us...not so much! :-D We just want Jethro to have a shot at life, and to be able to have him as a part of our family to love.

So, what it looks like is going to happen is that we are heading toward a single ventricle "solution". What this means, basically, is that they will block off the right side of the heart and ignore it. This will take 3 open heart surgeries to complete. The first one, Lord willing, will take place on Monday, the second would happen between 4 and 6 months of age and the final one would take place at 3 years of age. It probably would not be his "final" surgery, but the one that would complete this particular procedure.

Some of you have asked or suggested about the possibility of a transplant. That just really is not an option for us. For one thing, the financial aspect of it is so overwhelming, I can't hardly even contemplate it. The other is the pandora's box of emotions, etc. that it opens up. I just don't think I could go down that road right now. We are confident in the decision that was made yesterday, although we know that we still have an uncertain, difficult road ahead of us.

Praises are:
  • This baby is already a miracle. He was delivered dead, and they were able to resusitate (sp) him. Every day with this child is a blessing, and we want to acknowledge that.
  • Jethro is doing good right now. He is off the paraletic drug, he is moving and responding to touch, and he is working on opening his eyes! He just barely opens them, but there's some eyeballs in there! :-)
  • My milk supply is great. Right now he's not getting any milk, but when he's ready, we've got plenty!!
  • We were able to dedicate Jethro on Wednesday. 20 people in a little NICU room, all praying for healing for this sweet baby and that his life would glorify God. We had 3 pastors many babies are so blessed?
Prayer requests would be:
  • That Jethro would remain stable or continue to improve over the weekend. This is so important if we are going to be able to move forward with surgery on Monday. I know it's only the weekend away, but in Jethro's condition, each day is a lifetime.
  • For Mike and I to remain steady in our faith. Tuesday really knocked me for a loop. God is faithful and true, and I want to be that to Him as well.
  • Continuing wisdom and compassion for the drs and nurses. So far, we have had great nurses and our drs are outstanding. They really are a great bunch of folks.
  • And please pray for the surgery on Monday. That it would go smoothly, that the drs hands would be steady, that God would make the way clear before them.
We also have a great bunch of folks at home who are working hard to put a benefit dinner together. I want to extend my thanks to Cheri Thaut, our postmistress and my oldest boy's boss, for all her hard work and love and thoughtfulness for our family. You are the best, Cheri!

Also, if you are on Facebook, they have set up a group for Jethro. Search under Jethro Storms Dole, and you can find him. There will be updates there...possibly more often than here, and pictures as well.

Oh! Monday...if all goes as planned, I will create one "surgery" post, and just edit and add to it with updates, instead of creating mulitple posts on Monday. I will try and post an update each time we get one, but I may not get it done that often, however, I will update here.

Tuesday, March 2, 2010

The Latest

Well, I'm not even sure where to start. All weekend, we thought that Jethro was improving. Today we were told that he really isn't improving and our options are 3 or 4 different surgeries, or to make him comfortable and let him die. None of the surgeries present a real solution to his heart problem, a couple of them really aren't even options, either because of the financial circumstances we find ourselves in, or because of the severity of Jethro's heart condition.

I'm mostly posting to ask for prayer. Mike and I need a tremendous amount of wisdom as we seek the Lord's face in this turbulent time.

I am an emotional wreck, and find myself looking into a glass darkly, and wondering where God is in this. I KNOW He's here, I know He's watching over us, I know He's got this all under control, however, I feel set adrift.

I seem to be healing from my surgery okay, but am not very sharp mentally at the moment, so it makes these decisions even more daunting, because I don't have the clarity of thought that I would desire.

My laptop is dead at the moment...I'm on Will's netbook right now. So, I don't know when I'll get to update again, but I will as soon as I can. If you are on Facebook, there are updates there, Will updates for me.

Please, continue to pray for God's healing touch on Jethro.