Quick Update

Just a quick update. We do have internet, but it's dial-up, so I am trying to not spend a great deal of time online, since it ties up the phone.

We are in the rental. It is a lovely older home, built in 1914 with craftsman styling. Lots of lovely woodwork in the living areas of the house. We are still without dressers and table and chairs and living room chairs, but we have a couple of couches, beds and a picnic table to eat at, so we are content.

Jethro is doing well. Other than his feeding tube, to look at him, you would never guess that he has a very serious heart condition. He is creeping ever closer to the 10 lb mark. It is so odd to have a baby that is two months old and not yet a pound over his birth weight ~ and to be happy with his weight gain! We had a quick trip to the hospital on Friday. Jethro's INR (the level of Coumadin in his blood) was 7.5 (they want it between 2.5 and 3.5). So, since we were heading into the weekend, the cardiologist wanted us at the hospital where they could keep a close eye on Jethro. Once we got there, they did another check of his INR, and it was 4.5 ~ still high, but not dangerously so. With it as high as it was in the morning, they were concerned about a brain bleed or other internal bleeding. So, we got to come home. Not necessarily how I want to spend my afternoons, but I would rather that they be overly cautious with Jethro than just assume things will be okay and then end up in a crisis situation. And, I must say that we are blessed with wonderful cardiologists who are really on top of things. I have learned that if they aren't concerned, then I probably don't need to be either ~ they are cautious yet practical, definitely a good combination in a Dr!

Josiah had a wagon accident the other night and got to make a trip to the ER. He cried until Garth told him he would likely end up with a sucker at the hospital. On the way in, Levi called his girlfriend and let Si talk to her, and then he texted me. It was all good. :-) Until they started giving him shots to numb things up and started stitching. I called while they were stitching and he was crying for me. :-( This is only the 2d ER trip I haven't made, and there's not much harder on a Mama's heart than not being able to be there when your youngin's are hurt and wanting you. Si ended up with 12 stitches, although it could have easily have been 24, the Dr. spaced them out quite a bit, and now he is quite swollen ~ his right eye is totally swollen shut this morning, causing a good deal of distress when he woke and couldn't see out of it.

So, that is the major points of update on the clan. :-) Thanks for all your prayers, please continue to pray for Jethro. Although they were okay with his weight gain, he does need to be gaining more weight. They would really like to see him gain 20 grams a day and he's not there yet. If he doesn't gain adequately, they will move ahead with putting in a g-tube, which we would really like to avoid ~ mostly because it would mean one more surgery for the little punkin.

A New Temporary Home

Just a quick update.

We are out of the hospital. We were discharged last Wednesday. Jethro has been doing well since we've been "home". Tomorrow we meet our new primary care guy, a PA over in Tekoa. Thursday we have an appt with Dr. J., and it will be interesting to see how he thinks Jethro is doing. He has only gained a little bit of weight since we've been out of the hospital, but he has only thrown up once, and we've only had to put him on oxygen twice, and both times were when we were traveling.

We have a house to rent as of today. Yahoooo!!! I can't wait to get into our own home again. We still aren't totally sure what's happening with the house, but at least we have a place to call home. Jethro has so much "stuff" that it will be lovely to get settled in and not be in transition.

I don't know if we'll have internet, so if I don't post, it's probably because we don't. I will try to get some pictures and put up a post soon.

Please continue praying for Jethro. Even though we are no longer in the hospital, he is still a medically fragile baby. He needs to do well with his feeds and gain weight.

The benefit went well, and we were so blessed by everyone that turned out. Thanks to everyone for their prayers and support ~ we love you all.

Getting Closer...

It looks like we will be heading home sometime this week! Dr. J has told the staff we're leaving on Tuesday, but that is partially to get them going on making sure we are ready to head home...we may not actually get discharged until Wednesday or Thursday. Today he got to have Mama milk! He did really well with it and I am very excited about how well he is doing with his oral feeds. We will still go home with a feeding tube, because he doesn't have the stamina yet to eat enough to fulfill his nutritive needs, but we are heading in the right direction!

Please pray that we can find a rental so that we have a home to take him to.

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.

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!

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!

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.