Holiday and a Party

Tyler - aka the other kid, celebrated his 2nd birthday on Thanksgiving day this year! He loved the cake, presents and the attention. He's at a great age, where each present appears to be the best present he ever recieved! what a blast.

Makenzie continues to recover very well, enjoying school and refusing to take naps. She was very happy for Thanksgiving, with Tyler's birthday and passing the Dr's recommended date for restricted activities. Turkey Day was approximately six weeks post operation, until this time we were attempting to limit her activity as her chest recovered from being opened up for surgery. She was ready for Uncle Larry to stop by, so she could engage in her first dog-pile since before the surgery.

Hope you all have a wonderful holiday season!

Continuing to Amaze...

Makenzie just keeps amazing us - she has enjoyed a full week of full-day kindergarten this week, hardly missing a beat. She is struggling with understanding why she needs to take it easy; it's hard to explain to a 6 year old that her heart may be in great shape, but her ribcage still needs to heal. The only difference we can tell is that she can be a little more moody than usual, and we've been able to get her down for bed early a couple nights this week.

We had a fabulous weekend spending time with both sides of the family, as we were home for the deer opener. Tyler has clearly chosen his favorite relative outside of Mom, Dad and MJ. He has chosen Grandpa Jim (Heidi's dad) as his best buddy, and they make quite the pair.

We'll be home this weekend, and hope to get a couple more pictures up, for you all to see just how well MJ is doing! Thanks for reading, and for your continued thoughts and prayers for our girl.

Back to Normal

Is there such a thing? MJ is settling into her old routine - riding the bus to kindergarten from Open Arms Daycare, full days of school, etc. Over the course of this past weekend, we learned how well she is doing - refusing to take naps, running all day long. The car ride home at the end of the day is once again filled with songs and stories about the day.

Her incision looks great, the part that sticks out above her shirts is hardly noticeable. We've now officially passed the milestone I talked about last week - the shunt in her head seems to be working just fine, three weeks post-op.

Makenzie is looking forward to some quality time with both sets of grandparents this weekend, as Jim and Lois will be taking her for a sleepover on Thursday night (Her school is out Th and Fr). Then we'll be with Lowell and Casey for the deer opener.

Happy Halloween!

MJ had a great Halloween this year, not even three weeks removed from open heart surgery. We met with her cardiologist Friday afternoon- while we had hoped to do an echo of her heart, her doctor didn't feel it necessary yet, because she looked and sounded so good. That in itself was good news. We'll do another echo in 6 months, to look at pressures, and get an idea of how blood is moving through her heart and lungs.


Halloween itself was a blast - we trick or treated with the neighbors on a gorgeous MN evening. In the picture are good friends Libby and Molly. After a while, we gave up on trying to keep her from running. Even when the younger kids started wearing out, she was going strong. At bedtime when I tried to praise her for being so strong, she replied that she was just excited to get more candy. What an amazing little girl.

Correction to previous posting

Heidi corrected me, I posted the previous message one week early - last year it was three weeks post-op that Makenzie's shunt failed. That means that we have until next Tuesday to pass our unofficial milestone. We do still have a heart appt this Friday, we'll try to get some information and Halloween pictures posted this weekend!

Another Milestone Passed

Makenzie has enjoyed her return to Kindergarten this week! It's strange to think that less than two weeks removed from surgery, she was ready and willing to go back. She attended half days on Monday and Tuesday, taking some rest in the afternoons. Today she wanted to stick around for the afternoon and Music class. She has been self-limiting very well - we can tell that she is being careful about running, jumping and horseplay, which is a relief.

As for the milestone, in 2007, two weeks to the day after her heart surgery, the shunt in her head failed. The result was emergency neurosurgery to repair the shunt within a month of open heart surgery. While it is by no means an official milestone, it is very meaningful to us that she passed the two week mark in great health. The shunt is a wild card, which could fail at any time, or could be fine the rest of her life. We are pleased to report that once again this morning, her eyes were bright and clear, and she was just as vibrant as we all have come to expect.

We will visit Makenzie's cardiologist this Friday, Halloween. This will include an echo-cardiogram. It was also about two weeks post-op last year that we learned her heart surgery had not been successful. Last night as I put my ear to her chest, my heart once again skipped a beat when I heard the new valve working. Please keep MJ in your heart, as we hope to find out that this surgery has reduced the pressure in her heart, and maybe, just maybe it will help the left lung to take more blood.

P.S. - about that other kid - all of a sudden he is talking, getting picky about books at bedtime, and eating like a champ. He does appear to be afraid of Halloween costumes, which should make Friday evening very interesting...

So, How's That Girl Doing?

Makenzie is doing just fine, thank you for asking. She has gotten her appetite back, and is enjoying full nights of sleep, without coughing fits. Our days are returning back to something near normal, with the exception of stopping more often just to wonder at our girl.

We have been doing more coloring, crafts and reading than usual, as we look for ways to distract MJ from running and jumping.

A special thank you goes out to our Logan Avenue neighbors for providing food for the last two weeks - it has helped to keep us healthy and well fed. It has also allowed Heidi and Jake more time to play with the kids. Please pray for MJ, that her recovery continues, and that we don't have a repeat of the shunt malfunction like last year after heart surgery.

We hope to get out and about more often, but are limiting our activities, to limit her exposure to cold and flu bugs. MJ does insist that we see High School Musical 3 in the theater, which we look forward to very much!

A Full Night's Rest!

It's Wednesday morning, and our family had our first full nights rest in a couple of weeks! MJ slept through the night with no coughing fits - a sign that her lungs are finally clearing up from being bedridden for a week. Tyler had a couple fussy spells the last couple of nights as well - maybe growing pains? Whatever the reason, he slept well last night, too.

It was awesome.

MJ is eating better, and has had less ups and downs, we're very happy to report. We are now finding ourselves trying to limit her activities - as she feels better, she'll continue to push the limits on running, jumping, etc. - it's both a releif and a cause for stress.

One Big Happy Family!

This picture was taken Sunday afternoon. It was so beautiful and the leaves had to be raked, so we took the opportunity to get a family picture. This was 5 days post surgery for Makenzie and you'd hardly know it! She is truly an amazing young lady. We thought it would be good for her to get outside in the fresh air, help clear those lungs out a bit. And it worked. She had a great night and slept until 9:30am Monday morning.

She is doing very well. We need to keep drinking plenty of fluids and get rest, but now the hard part is going to be telling her to settle down. The girl's been in bed for 5 days, she wants to play!

Thank you all once again for your thoughts and prayers. We are so blessed to have family and friends like you!

Makenzie's New Heart

Here's a bit of a summary of what Jake and I learned during Makenzie's echo. We actually got to see the valve working! That was amazing! So with the valve working, there is no blood rushing back into her heart. Instead, this blood is actually flowing over to the left pulmonary artery (LPA). We're hoping this means that more blood will be pushed over to the left lung and it might start to profuse and use the oxygen appropriately. Up to this point, her left lung hasn't received an adequete amount of blood to really learn how to function. If it can get more blood, maybe it will "come to life" sort a say. This was all good news. The surgeon came in and said everything looked great - that there was no fluid around her heart, which could have meant a set-back in her recovery.

At this point, we will have follow up appointments to look at the valve and measure where that blood is going. We may have a lung profusion scan in a couple months that will tell us if there is any difference in the left lung. Right now, her left lung only profuses 10% of the blood, the right lung profuses 90%! If we could even get to 20/80, that would be fantastic!!

Hope that makes sense.

We're Home!!!

Sorry for not getting a post up on Friday, we were busy getting out chest tubes, IV's, etc. MJ had some pain as well, which made for a another long day. Today more than makes up for the ups and downs of the last two days of recovery.

We had a happy homecoming just before noon today, with Isaiah and Libby from accross the street there to greet us with big smiles and a home-made banner!

We'll give you more updates on the status of her heart - later. Right now is about getting settled in and just enjoying being all together as a family once again.

Don't forget the other kid!

Today we got to see Tyler again for the first time since Sunday Afternoon. Huge thanks go out to Heidi's sister Jody and her family for taking in our little man. Tyler, Jody, Chelsey, Grandma Lois and Grandpa Jim all came to visit today, but MJ wasn't quite in the entertaining mode. She struggled today with eating, drinking and being active. Having Tyler show up did provide enough spark to get her out the door and down the hall to the playroom, which was great. Other than that, she had a lot of pain, and spent a lot of the day upset.

We actually started to worry about a malfunction of the shunt in her head. We had also asked the Doctors to write orders to put her back on some heavy pain medication and on IV fluids. Around 5:30PM she started to perk up, and drink some pedialite. By the time her dinner arrived, she was playing a couple games with Tyler (thank goodness, as it was like trying to keep a monkey in a chicken coop). She had a healthy helping of Jello, spaghetti-o's and juice. By the time Tyler and Jake left for home at 7:20, she was smiling, coloring, singing along to the Muppet's movie we were watching, and was more than willing to pose for a picture!

We pray that tonight she will get a good night's rest, that her chest tubes will stop bleeding, that she oxygenates well, and that her recovery will continue!

That's our girl!

It's Wednesday evening, and we've made it out of the intensive care unit. MJ has some great numbers, a solid heart rate, good pressures and blood gasses. She's finally able to start eating a little food, as her tummy starts to wake up.

She is getting back her personality, as the picture shows. This includes stories, singing and even a little goofing around with the cardiologists. It warms our hearts to have her doing so well. Her teacher stopped by the house today with a get well banner and a mitful of cards from MJ's classmates. Midway looking through the cards, Kenzie told us that she should make cards for all the people sending her cards.

That's our girl, it is so very nice to have her back.

Funny, she LOOKS like Makenzie...

Makenzie is recovering slowly, but steadily. We've been dealing with the nasty attitude which comes with coming down from 1.5 days of narcotics. Two out of three IV's are coming out today, and she is slowly being unplugged from machines/bags/etc. She will likely feel a lot better once she can move around a little more!

The doctors are still pleased with her progress - her heart has continued to be very steady, blood pressures and bloods gasses all look very good.

Another day with no camera - sorry about that. Trust us, she looks good - has great color, the haze has cleared from those blue eyes, and she will even flash a smile, if just for a moment, from time to time.

In Recovery

Thank you to all the notes, well wishes, prayers and thoughts you've shared with us. Makenzie is recovering well, we just got the ventilator removed around 6:30. She's a little out of sorts, but her numbers are all solid which is wonderful to see.

She still has two chest tubes in, for drainage, but the preliminary xrays and ultrasound looked very good. We hope that the recovery continues to be smooth, and we are hopeful for good results on scheduled tests tomorrow am.

We're finally able to relax a little bit, after a stressful afternoon of trying to keep her calm until the ventilator could be removed. We'll try to bring the camera tomorrow so we can get a couple of shots posted.

Oh the highs and lows...

It's Tuesday, just after lunch, and Makenzie has returned to the intensive care unit following a successful surgery. The surgeon was able to get in, and get to work with no surprises today. He was able to place a "biocore valve," made by St. Jude Medical, which you can google to see a picture of. He was also able to clean up her pulmonary artery and add a patch to make it larger.

He found the tissue to be in good condition, which was a huge relief to Heidi and I. The valve tested well - no leakage, good flow, etc. She spent about 45 minutes on the heart/lung bypass, and came off the bypass with flying colors.

Please pray that her numbers will be stable, her bleeding will be minimal and that her recovery will be swift!

While the previous 24 hours were hard to endure, she gave us a sign positive sign this morning just before surgery. Heidi leaned over to give her one last smooch, and MJ just about jumped out of the bed. I took it as an indicator that our little fighter was ready for this round. As soon as she is settled in her room, Heidi and I will be able to return to her side. If we don't post for a while, assume it's because we have better things to do!!!

You can never be prepared...

We experienced a setback today, there was a complication in placing IV lines, which will require us to put off surgery for a day. MJ is currently under sedation, with all of the lines placed, and on the ventilator. We were not prepared for this, but understand that it is necessary to wait. Today and tonight we will sit with her to make sure that she sleeps well, and that the IV sites are in good working condition.

Surgery is scheduled for tomorrow AM, first thing.

The night before...

First of all, thank you to everyone who has sent up prayers already for Makenzie, us, her doctores, nurses, etc. Keep 'em coming! We need to arrive tomorrow morning at 5:30am. At this point, she can't have anything to eat, and only liquids until 3:00. She'll be disappointed when she wakes up at 2:00 and wants some of Grandma's apple sauce!

We will do our best to keep things updated. I only hope tomorrow will go as fast as this weekend did. Sometimes, you just want to stop time and treasure a certain moment or laugh or smile. I wanted to save the whole day. It will be good to have it over with, but I just hate the thought of her going through this again.

Please pray for Dr. St. Louis, that he can skillfully put in the pulmonary valve and things will go as planned. Pray that the outflow tract will take the new patch and not scare down. And finally, pray that this valve and outflow tract reconstruction will last well into her teen years.

Until tomorrow...I'm going to get some rest. Tomorrow will be a long day.

No, it's never easy...

The closer we get to MJ's next heart surgery, the harder it gets. You find yourself watching her more closely, looking for sneezes, trying to curb activities to limit her exposure to any kind of germs. You wake up in the night, with worries about the procedure which are out of your control. It's harder to concentrate on other things, and the wrong (right?) song playing on the radio can bring a tear to your eye. Thank you all for your prayers and thoughts so far, please keep 'em coming.

MJ's Heart: 101

While we don't know the exact plans for next week, here are the two remaining issues with MJ's heart.

1. 1). she does not have a pulmonary valve - this means that her heart not only pumps all the blood it is supposed to, but it also pumps any blood that back-washes into her heart because there is no valve to stop it. Some people live well into their 40's with no pulmonary valve, but MJ's heart is already working twice as hard as a normal kids. The Doctors all concur that a valve is necessary. We don't know what type of valve it will be yet.

2). MJ's left pulmonary artery is too small, it doesn't look anything like this picture. This diagram shows a normal heart with the pulmonary artery is the darkly shaded artery running between points 1&2, branching off under the Aorta. The picture is from the perspective of looking at MJ's chest, so Left and Right are switched. MJ's pulmonary valve leans towards the right side of her chest, with the left being just a small branch off of it. MJ's surgeon would like to replace the entire pulmonary artery, to create a more normal y-shaped structure like this picture.

• The extent of the work which dr's will be able to do next week will depend upon what they find during the procedure. They need room for the new material, and good tissue to work with.

• This will be her most extensive work yet, we had hoped for 6 years that it wouldn't come to this. The flip side of the situation is that she is extremely healthy right now, her heart is strong, and if you see her on a regular basis, you know what an incredible spirit she has.

• This week is about keeping the family healthy, preparing for time away from work, and loving Makenzie up in preparation for next week.

Quick Update

We're almost a week post heart-cath, and Makenzie has been back to her normal self again. She actually took a couple naps this weekend, nice to know she's normal!

We haven't heard from the surgeon yet, but understand that the plans for mid-October will be fluid, as they may have to change as the procedure progresses. Thanks for thinking of our girl!

Back at Home!

Makenzie's heart cath. went well, we were done around 9:30 this morning, and stayed around until 4:30 in the afternoon for observation. Her Dr. was able to get some good images of Makenzie's heart, with pressures. We will speak with her new surgeon next week to find out what the plan is for surgery in October.


We're home now, enjoying a movie on the couch. Her first smiles this afternoon were a welcome site - we never quite get used to sending her off, no matter how many times we've done it.


The pictures are from this morning in the pre-op room. Thanks for your thoughts and prayers, they certainly helped to get her home safe again today.

Heart Cath Lab

It's a little after 8am, and Makenzie is in the Lab. Her Doctor stated that they will do no work to expand the pulmonary arteries today, the focus is on getting good images for the October procedure.

Makenzie was in good spirits heading to the cath lab, a little bit loopy from the meds, but telling the anesthesiologist about her Wonder Woman costume. Unfortunately, I can't grab this morning's pictures to place on the Blog, we'll try to get some more picks up asap!

Jake and Heidi.

MAKENZIE UPDATE

Makenzie will have to endure yet another heart surgery this fall. We were told shortly after the last procedure that there was a new narrowing in her heart and that the pressure of her right side was becoming too great. Her heart is starting to enlarge. This is not the scenario we had hoped for.

So, on Oct. 13th at 8:00am, we have surgery planned at the University of Minnesota Children’s Hospital. The goal, as far as we know it, is to put in a pulmonary valve, attempt to open the new narrowing in the pulmonary outflow track and maybe attempt once last effort to open the left pulmonary artery. Although we haven’t specifically asked, we can only imagine this will be a very lengthy procedure.

We did get a second opinion at the Mayo Clinic in Rochester, who endorsed what the U has done so far. With that, we have decided to stay at the U.

In the time leading up to her surgery and after, we will do our best to keep you informed. However, if you’re wondering, please call. We will try to get back to you as soon as we can. Sometimes, it’s just hard to make all the phone calls and it’s easier when people call us.

We hope and pray that you are all doing well and enjoying yet another change of seasons. Take care and God Bless.

Family Update

We wanted to take a moment to give you an update on the family. Life has been so busy lately and the kids change so quickly, that we thought it was time. please make sure you've deleted the old (MSN) email!

Makenzie has successfully made it through her first couple of weeks of Kindergarten! She did so well getting on the bus the first time, I was so impressed. Mom didn’t do so well seeing her off. At least I didn’t let her see me cry like a baby! Not that her first day of Kindergarten wasn’t enough, it was also her 6th birthday.

Tyler is learning new words all the time. His favorites are ball, big truck, kitty and of course doggie! He got a big boy hair cut over Labor Day weekend and once again, mom cried! He’s doing very well and growing like a weed.

Jake and I have finished a number of home improvement projects in our bedroom, new ceiling fans, new electrical work, remodeled the closet and new carpet. Whew – glad to have that done!

About Our Family

This is a blog for family and friends - we hope to have this up and available for you to be able to keep up with our family, and with Makenzie's health!