We're talkin' baseball...

Green grass. Dirt. Painted foul lines. The sound of cletes on the cement in the dugout. The sound of the ball going off the bat. Baseball season is upon us!! It's our favorite time of year at the Burdorf house. The season kicked off on Monday night with the Trojans picking up both wins in a double-header. It was a beautiful night to be at field and we can't wait for the rest of the summer!


Coach Dad

This child is a dirt magnet!!

I just love this...

Bowen's first game. As you can see, it wore him out.

On the cycler

Hard to believe, but another week is almost over. Bowen and I headed back down to Iowa City on Tuesday morning and returned home Thursday afternoon.

Blake has made some major strides this week. If you remember, last Saturday he was at 70 mL for his dialysis. They bumped him up to 90 mL on Sunday and on Wednesday bumped him up again to 110 mL. With the bump to 110, they switched him over to the cycler (the machine that we will eventually use at home for his night time dialysis) Thursday morning. The PD (peritoneal dialysis) nurses walked me through and showed me a bunch of different things and got Blake going. Once again, Blake was a champ! He had no problems being on the machine (it fills him faster with fluid and can be quite uncomfortable) at all.

I talked to the PD nurses and it sounds like our official "training" will start June 6th. They penciled us in for a couple of weeks, but the nurse said it usually doesn't take that long and is just a matter of how comfortable with things we are.

On the downside, the nurses had been noticing a possible hernia, so they talked to the doctor about it. The doc called the pediatric surgery team in today and they decided they should take care of it so it doesn't cause damage to Blake and become an emergency situation. So, please say a prayer that everything goes well Friday morning for Blake.

I had a great few days with both the boys! The nurses were helpful in helping me with whatever twin I wasn't holding. They are very insistent that Blake gets some good cuddle with his mama! :) I think the nurses really just wanted some cuddle time with Bowen too!

We are all heading back down for the Memorial Day weekend and hoping the dialysis continues to go well!

Weekend Update (Week 6)

Can't believe our twin boys are already 6 weeks old! Here are a couple pics of them:

Blake

Bowen

6 weeks old, my how time flies! With baseball and Jamie going to work on Mondays and Fridays the week just goes by way too quickly!

Blake continues to make great strides! The talk is now in the planning stages for when it is time to go home. We are talking about contacting the company to order the cycler for the dialysis and to set up the first delivery of medical supplies. We are trying to figure out when we can get the training done so that we know all about how to care for the g-tube, dialysis, etc.

Blake has been upped to 90 ml of dialysis fluid per pass. A pass lasts 45 minutes before it is drained for 15 and then a new 90 ml is put in. This past week he was doing 70 ml in the same process and talk is that he will go up mid week and then again next weekend. By that time he will be in his target range and will be on the cycler and they will be looking to do the cycles just at night for 12 hours or so. When he comes home that is what we will do here, 12 hours or so per day.

He continues to eat very well even though it is only an ounce or two at a time. His goal is to eat 240 ml in 12 hours during the day and he normally gets that or close. He will eat that ounce or two each hour which is a pain but the good news is he is eating. He also gets 25 ml per hour at night through his g-tube so he will sleep through the night.

Couldn't resist putting this picture on of Jenna and Brody. Sunday when we visited Blake we parked right next to this statue, so the kids wanted their picture taken on it. We love being in Hawkeye country!!

I stole this...

I saw this on another blog I read and I'm stealing it! I found so much wisdom and truth in these words and wanted to share it with you. Hope you enjoy and have a great weekend! We are headed down to Iowa City once again to visit Blake.

Wear sunscreen.

If I could offer you only one tip for the future, sunscreen would be it. The long-term benefits of sunscreen have been proved by scientists, whereas the rest of my advice has no basis more reliable than my own meandering experience. I will dispense this advice now.

Enjoy the power and beauty of your youth. Oh, never mind. You will not understand the power and beauty of your youth until they've faded. But trust me, in 20 years, you'll look back at photos of yourself and recall in a way you can't grasp now how much possibility lay before you and how fabulous you really looked. You are not as fat as you imagine.

Don't worry about the future. Or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life are apt to be things that never crossed your worried mind, the kind that blindside you at 4pm on some idle Tuesday.

Do one thing every day that scares you.

Sing.

Don't be reckless with other people's hearts. Don't put up with people who are reckless with yours.

Floss.

Don't waste your time on jealousy. Sometimes you're ahead, sometimes you're behind. The race is long and, in the end, it's only with yourself.

Remember compliments you receive. Forget the insults. If you succeed in doing this, tell me how.

Keep your old love letters. Throw away your old bank statements.

Stretch.

Don't feel guilty if you don't know what you want to do with your life. The most interesting people I know didn't know at 22 what they wanted to do with their lives. Some of the most interesting 40-year-olds I know still don't.

Get plenty of calcium. Be kind to your knees. You'll miss them when they're gone.

Maybe you'll marry, maybe you won't. Maybe you'll have children, maybe you won't. Maybe you'll divorce at 40, maybe you'll dance the funky chicken on your 75th wedding anniversary. Whatever you do, don't congratulate yourself too much, or berate yourself either. Your choices are half chance. So are everybody else's.

Enjoy your body. Use it every way you can. Don't be afraid of it or of what other people think of it. It's the greatest instrument you'll ever own.

Dance, even if you have nowhere to do it but your living room.

Read the directions, even if you don't follow them.

Do not read beauty magazines. They will only make you feel ugly.

Get to know your parents. You never know when they'll be gone for good. Be nice to your siblings. They're your best link to your past and the people most likely to stick with you in the
future.

Understand that friends come and go, but with a precious few you should hold on. Work hard to bridge the gaps in geography and lifestyle, because the older you get, the more you need the people who knew you when you were young.

Accept certain inalienable truths: Prices will rise. Politicians will philander. You, too, will get old. And when you do, you'll fantasize that when you were young, prices were reasonable,
politicians were noble and children respected their elders.

Respect your elders.

Don't mess too much with your hair or by the time you're 40 it will look 85.

Be careful whose advice you buy, but be patient with those who supply it. Advice is a form of nostalgia. Dispensing it is a way of fishing the past from the disposal, wiping it off, painting over the ugly parts and recycling it for more than it's worth.

But trust me on the sunscreen.

(~Mary Schmich of the Chicago Tribune - June 1, 1997)

The way I see it...

Things I've Learned So Far...
I have logged a lot of miles on the road the past five weeks and sometimes my mind has wandered to what my life is like now. Things I've learned from what's going on in my life.

It's funny how life sometimes turns out, isn't it? If you would have told me my freshmen year in high school that I would end up marrying Aaron, I probably would have laughed. If you would have told me that we'd someday have four kids, including a set of twin boys, I probably wouldn't have been able to stop laughing at how crazy that sounded. And now? I can't imagine my life any other way!

I've learned that life does indeed throw you curveballs. Ever since we heard those words at the ultrasound, "There's two babies in there," life has been one big curveball. Completely unexpected, but it is what it is. I think sometimes you need to keep battling and fouling off pitches because eventually you will be able to drive that ball into the outfield (pardon the baseball metaphor, but it is that time of the year!). I guess what I mean is that sometimes things are different than what you had envisioned, but that's ok.

After being around the hospital the past month I've realized that we are not in a good situation with Blake. But, there's people that are dealing with a heck of a lot worse than us. The hospital brings in parents whose children have had kidney transplants to talk to us and ask them questions. The list of medical issues with them is so long. I actually feel like we lucked out with Blake because I have seen first hand that things could have been so much worse. That's one of those life lessons I hope I can carry with me, somebody always has things worse than you do.

Finally, the power of positivity and acceptance. While I admit that things haven't always been easy, my husband and I made the decision that we were going to be positive about this. This kidney stuff is just a part of who Blake will be. This is our reality. The sooner we accept it and do all we can to help get him out of the hospital and then be comfortable at home, the better. The resilience in that little fighter of ours is amazing! He has handled and tolerated everything that they've done to him and for him.

There are no exact dates or timetables that have been set yet about when we get to bring Blake home, but it will hopefully be no more than a few weeks. Things always have a way of working themselves out and they will, but that's just the way I see it.

Weekend Update

Attempt number one at photos: Both screaming their heads off!
Attempt number two at photos: One asleep and one awake. Progress... I thought this picture was super sweet. :)
This whole picture thing is going to be a tough go! It's a challenge to get both of them doing the same thing at the same time.

Blake continues to do well. They have now upped his dialysis amount to 70 mL an hour and they draw out around 90-100 each time, that is a good thing. He is eating much better from his bottle and that will continue to improve as well. If we can make little strides every 3-5 days that would be great!

Bowen continues to grow and seems to be constantly hungry! He also seems to like being up from 1-4 AM, not so great!

We know we haven't updated as much in the last week or so but take that as a good sign that there isn't much to update, on a daily basis, as there was before. We still don't really have a time table on when Blake might get to come home but we think that discussion will happen this week.

It has been a while (Blake Update)

These past few weeks have flown by, where has the time gone? Well, we are at five weeks today. Both boys are growing and becoming very alert. It is funny to see the mannerisms that both boys have as many are the same ones.

An update on Blake: They got him started back up on dialysis and have upped his hourly fluid intake from 35 to 50 mL. He is starting to eat much better out of the bottle, even if it is only an ounce it is still progress. He is back in a crib and is loved by the nurses! They fight to hold him, feed him, or hold Bowen when Jamie is doing those things with Blake. In Bay 1 they don't typically have kids that can be held or feed so Blake is very popular. Both boys weigh around 8.5 pounds and look good. Before Jamie came home on Thursday she had a talk with the doctors and they said that next week we should be able to start talking about a time frame for starting our training and about when Blake can come home. Overall, Blake is doing very well which makes it easier on his parents, that is for sure!

When we are in Iowa City this weekend we will work on getting a side by side picture of the boys for all of you to see.

Update on Bracelets

We have had a very good reaction to the bracelets for Blake. If you would like one, please either leave your mailing address (and how many you want us to send you) in the comments section of this post or send me a text or email. They cost $2 and you can send that to our address:

Aaron and Jamie Burdorf
PO Box 501
State Center, IA 50247

Thank you so much for your support of Blake!

Jess & Mitch's Wedding Weekend

This past weekend was CRAZY!! Not only have we been trying to balance our time between State Center and Iowa City, but throw into the mix my sister's wedding in Cherokee and you have pure craziness.

Jenna, Brody, Bowen and I headed to Cherokee on Thursday afternoon so we could help with wedding preparations. Aaron was supposed to be a groomsmen, but we all decided together that he needed to be in Iowa City. So, our separate ways we went.

It was a beautiful Saturday for Jess and Mitch's wedding! My sister was gorgeous and everything went off without a hitch. I was nervous about two things on Saturday: 1. My children making it down the aisle and 2. My speech at the reception. Both things went well!

It was a long, exhausting weekend with all the festivities, but it was a great celebration and it was WONDERFUL to see so many family members. We don't get together near enough and we have so much fun when we're together. Here are some pictures from the big day!

Our little flower girl. Jenna was getting hot and nervous and feeling sick before it was time to walk down the aisle, but after a trip outside she was ready to go!

"Little GQ", as the photographers called Brody, who was making his debut as a ring bearer. He also got down the aisle no problem...and within minutes was sound asleep snoring on Grandma Linda's lap! That no nap stuff is hard work! :)

A picture of the Beadle clan. Not everybody was able to make it, but it was great to see those that did.

The three siblings: Justin, Jess and me on our way to the reception in Aurelia.

Fun on the party bus with Mandy! :) I was sans-children and took the time on the bus to relax and enjoy the moment.

Aunt Jess and Brody during the dollar dance. Brody was very excited to give me his dollar to dance.

BLAKE UPDATE: Aaron headed down Saturday to be with Blake and our little guy is doing well. The surgeon said the G-tube looked good and they started using it on Saturday. Because of that, they were able to take the feeding tube out of his nose. That means, for the first time since birth, he has no tubes or anything on his face! It sounds like they will re-start dialysis on Monday.

Muffins For Moms Day

Muffins for Moms Day was held at the preschool last Thursday. Jenna had been looking forward to it for a week or two and I have to say, so was I! I knew it would be a fun time with chance for me to have some one-on-one time with my favorite girl. :) We got to make picture frames together, have some play time, Jenna got to be my waitress during snack time, we sang silly songs and looked ridiculous (my favorite part!) and read books together.

The kids each made some presents for their moms, which included a flower, portrait drawn by our kiddos and a sweet poem with their hand prints.

One of the gifts said:

I've got to hand it to my mom!

She's an expert at making papers. Because she wants people to read them. (italics is what the kids had to fill in).

The other one said:

I think my mom is pretty.

My mom is the prettiest at church.

I know my mom loves me because she kisses me.

Sweet answers from my sweet baby girl! Here's a picture of the two of us at the end of the day:

4 Week Update

It is hard to believe that we are already at the four week mark. So much has happened during that time and we are thankful for all of it!

An update on Blake's g-tube: after talking with the NICU this morning he sounds like he is doing great. The surgery went as expected and less than 24 hours after having the g-tube placed they used it to feed him. He still struggles with swallowing but that will come with time. So right now he starts with the bottle and whatever he doesn't get down then is put in the g-tube (so no more feeding tube in the nose). He will also get medicines through the g-tube which will be nice in the long run. As for dialysis, they will start that back up on Monday so the g-tube has a chance to heal first.

This weekend is very busy with Jamie and the 3 little one all in Cherokee for her sisters wedding while Aaron is in State Center for baseball before heading to Iowa City Saturday and Sunday to see Blake. We want to wish Jess and Mitch all the best with their wedding and have a great Saturday!

Blake Bracelets

A friend of ours ordered these and passed them on to us to sell as a way to help with gas money and such. I apologize for the picture (I used my phone) but they are black and yellow and have the phrase #keepfightingblake on them. The reason that we used this phrase is because the # actually is used to start what is called a hashtag on Twitter. Aaron uses Twitter a lot and when he got to Iowa City with Blake he always uses that hashtag. A hashtag is a way of organizing what you are saying or describing what you are trying to say. If you found a #keepfightingblake hashtag you could click on it and see what Aaron has said about Blake since birth.

If you would like to get a braclet, they are $2 and we will use the funds to help us get back and forth from Iowa City. Thank you all so much for continuing to follow Blake's journey!

Recent Kiddo Pics

I realized that we've gotten so caught up with relaying information about Blake, that we really haven't really posted the pictures of the four kiddos lately. Here are some recent photos:

Jenna and Brody at a Hawkeye baseball game

My precious baby dolls asleep:

Bowen

Blake

And them awake:

Blakers

And Bowen...the boys have both gotten so alert this past week! I love watching their dark blue eyes take everything in.

The newest toy for the oldest two - a John Deere trike. They. Love. It. :) Sidenote: I'm in love with this photo because I have one of me and my brother on a red trike when we were about this age.

G-tube

The nephrology team decided to go ahead with the placement of the G-tube for Blake. The surgery is scheduled for Thursday afternoon. A G-tube is basically a feeding tube that goes directly into the stomach. We have learned that kids with kidney issues tend to have problems getting enough nutrients and are slow to grow and the G-tube should help with both of those things. Another reason they want to put the tube in now is that they have to stop dialysis for a couple days to let the place heal a little and start to set. The kidneys are still working a little bit even with the dialysis, so they will just need to keep him stable for a couple of days without the dialysis.

We are praying that everything goes as planned and that this is his final procedure that needs to be done!

Mid Week Update

Jamie and Bowen have spent the first few days of this week with Blake in Iowa City. Aaron has been home with the other two hauling them around to great people that help while he is at school and off to baseball practice.

Dialysis seems to be going well but there hasn't been any big changes as they now try to balance things between his bag and his bottle/feeding tube. Now there is talk of placing a g-tube so that it is easier still to balance those things. If that should (will probably happen early next week) then they will have to stop dialysis for a few days to put in that tube. That tube would go directly through where the dialysis catheter spreads out in the tummy wall. A g-tube is used to feed directly into the stomach and would help us make sure he gets all his nutrients and medicine he needs while not having to deal with him puking or spitting something out.

We fully understand that all of these adjustments are necessary but we also know that we keep getting these glimmers of hope that we will get him home soon and then we push it back again. The good news is that we are all surviving and Blake continues to be a great patient. Bowen is doing well with mommy and the older kids seem to have figured out that life isn't going to be what they might have considered normal before the twins, they are adjusting well. Friends continue to be a big help and we probably will never be able to say thank you enough, but here is one more THANK YOU!

And...

Then it happened. Just as soon as I posted that we were getting closer to dialysis sure enough it happened just a few hours later. Since putting in the PD catheter a week ago Friday, we have been hoping that his numbers would continue to get better and not have to start dialysis right away. We also knew that the time would come that we would have to give in but we were hoping to get two weeks so that the catheter could fully heal. Well, we got 1 week and 3 days.

Blake's potassium levels had the final say. We have been chasing that number for over a week and no matter how they tried to control it, nothing worked. In the end it was like we were playing a game that had a vicious cycle that wouldn't end, waiting for the right time and that time was 1 am on Sunday, May 1. We woke up to feed Bowen at 2 am and we both had a missed call and voice mail from the hospital, kind of a scary feeling! Aaron checked his phone and the message said that they would be moving Blake back to Bay 1 and would have dialysis started by 8 am.

Aaron went to check on Blake around 8:30 and he had been on the cycle for 2+ hours. Currently he is getting 35 ml that goes in every hour and then is drained off, so it is 24/7. It is all done manually right now until he can tolerate 60-65 ml over a longer period of time but we aren't going to rush to that point yet for a few reasons. First we want to make sure that the catheter can take the pressure on the entry incision and second just in case we need to place a g-tube for feeding they may need to back of dialysis for a day or two or keep it low pressure. The goal for a baby his size is to be able to handle 100-120 ml at a time and if that happens it will also only take the night to run those cycles through a machine and then Blake will be unhooked for the day.

According to our kidney doc today he foresees that to be 2-4 weeks. That time will be spent gradually giving more fluids, figuring out how much he can eat in a bottle, seeing if we need a g-tube, and training the parents on how to run and deal with all of this. It is going to be a process for sure but we know that in order for us to bring him home we have to be able to handle it and we are going to be just as strong as he is so that we do!

Hopefully the next few postings will be a bit more positive but hang in there with us, we are going to get this right!