Eventful Day

So happy after I filled my pants!!!

Daddy taking me for my first stroller ride

Our little Turkey

I am learning to like my Bumbo seat. I can see everything now!

My 1st Thanksgiving. I can't wait to eat turkey next year!

Lindsay had a lot of activities today. Since we had the five of us here, I attempted to have family photos taken which I will keep to myself because guess what....they will be my Christmas cards!!! So, you will have to wait on those, which I will say, turned out pretty good for arranging a mock photo studio in the hallway of the hospital!! ha ha Lindsay also got to have a stroller ride today. She loved that and then was pooped, literally, afterward. I fed and changed her poopy diaper and then she conked out on me. The boys are having a great time. We went to The Seth's (Amanda's parents) hotel to take the boys swimming and they had a blast with Amanda and Jason's son, Caden. Pizza was ordered and then the boys were exhausted! Another good day for Lindsay and another day to be blessed by her.

Enjoy the photos from the days adventures. We sure are enjoying having our baby girl back!Love to you all!

Suzie

Prom Queen Lindsay will miss her Prom King.....Connor

It has been a gloomy day here in Ann Arbor. Lindsay's heart brother Connor received his wings this afternoon. He struggled so, but we find peace in that he is healed now. His heart is whole and he can play for eternity. Please pray for Eric and Michelle and the next journey in their life will be a hard one without their Prince. Please hug your children extra long tonight because we are blessed to have them everyday. Life is so precious.
I will post more photos of Lindsay later this afternoon.
Love you all!
Suzie

LAST CALL FOR POINSETTIAS

The Poinsettia Sale is about to come to a close this weekend, so if you've procrastinated in ordering, please do so by Sunday. E-mail your order to ultratravel@jasnetworks.net
Plants will be ready for pickup Dec. 6th 1:00 pm -4:00 pm at the Dean's in Parchment.
To view selections of plant colors and sizes, please visit the fund raising icon on the right.

Thanks,
The Lindsay Dean Heart Fund

Thanksgiving Update

We had the most "Thankful" Thanksgiving yesterday with a visit to Ann Arbor because there isn't anywhere I would have rather been than there. (well maybe to have been with all 5 of my grand kids)
I was able to hold and feed Lindsay while Suzie, JR, Cole, and Cruz took a much needed nap. I actually was able to give Lindsay a bottle (something I haven't been able to do since Sept.) Bill cooked the turkey and I did the fixings and we took it over to the RM House so the Dean's have actual authentic left overs.
We met up with Terry Vanderberg on our way over, to intercept a cute basket that Pam and Allison had made up. Lindsay now has her own personal "Princess Bible". Yes, Pam and Allison found this beautiful Bible that was a perfect gift for our Princess Lindsay. Suzie was ecstatic!
We were able to look in on Carlee, who is doing fantastic! Carlee's mom had an extra little turkey outfit so she shared with Lindsay. Our two "little turkeys" looked adorable yesterday.
This visit made my heart feel so warm with the way Lindsay looked and acted. We truly have her back to herself again and it was a much better drive home this week because of that.
We weren't able to look in on Connor's parents as they are bedside most of the time. Please extend prayers to them during this time. We've been there, hanging on by a thread and these heart families are truly bonded.
This Thanksgiving was so non-traditional, taking turns to go down the hall for some eats, not sitting together at a table giving thanks, but, it will remain one of the most memorable for me. Lindsay has surely shown our family what we're all thankful for.

Heart hugs to all and I hope you all had a blessed Thanksgiving, perhaps looking at it slightly different this year because of Lindsay.

Linda

Thankful for so many things

Well, to start this off, Lindsay has had her best day yet!!! She was her normal self today and was simply delightful. My heart is just so full right now with happiness because of her perfect day. She had no fever and didn't vomit once!! WHOO HOO!! We were also told today that she is able to be listed on the transplant list as ABO too. What that means is that she would be able to accept a heart no matter the blood type. That opens so many more doors for her. There is still the fact of the antibodies, etc. but she had her first dose of Rituximab and did fantastic. They were looking for allergic reactions but she didn't have any. My daughter is my hero!!!!

This Thanksgiving I really can't even put into words what I'm thankful for because it is so much! This is probably why I'm such a blubbery mess these days because you can't help to think that this could be our only Thanksgiving with Lindsay. Of course you never want that to be true and you want to have many, many more, but then I think of all of the other heart families out there that don't have their babies to love during the holidays and I feel incredibly blessed to still have her here on earth. Every day is a gift and we try to make each day the best it can be because we cannot predict what will happen tomorrow. As we are thinking of that, please put Connor in your prayers tonight. He is linked on the right. He is not doing very well and doctors are not giving him a very good prognosis. We have become good friends with his parents, Michelle and Eric, and would like you to include them in your prayers. I can't imagine having to make "the" decision but here in "heart world", that can happen at any moment and I pray that God is guiding them through this and making it easier for them.
I am typing tonight with all of my boys SNORING!! in the background! ha ha I love having them all in one place and look forward to some wonderful family time this Thanksgiving. We have so many things to be thankful for and all of you are included! We thank you for being apart of our lives and caring so much for our family. We wouldn't have made it this far without your support. We are eternally grateful. May everyone have a blessed Thanksgiving and please be safe!
Love to you all,
Suzie

Message from home

Well, I was talked into staying at home with my boys for one more night and I will head back to Ann Arbor in the morning. I called up there a few times this afternoon to check in on the princess and she has been great today. No fevers and only spitting up a couple of her bottles. Crossing our fingers for no fever tonight. It seems that her pattern is that spikes one between 10p and 2a. So, hopefully that won't happen tonight. If she doesn't, then maybe she is over her rough patch as far as her addiction is concerned. We also got a phone call from the cardiologist in charge in Moderate Care for the week and he said that Lindsay will be getting her first dose of Rituximab tomorrow at 11 am. I am leaving early enough to be there by then so that I can ask a few questions before she is either injected or they start the drip. Not sure which one it will be. I will keep you posted. Talk to you all tomorrow~
Love, Suzie

Lindsay,Lindsay,Lindsay

She sure is a tricky one to figure out these days. Before we left the hospital this evening, or should I say this morning, Lindsay had spiked a fever again. Doctors keep taking cultures and they don't grow anything, so no infection as of yet. They wanted to take more tonight but JR and I got a little upset because everytime that they do this, they obviously take blood from her that she needs to keep. After a long discussion with the doctors, and yes we went back to PCTU to have discussions with them as well, we have come to the conclusion that they will take blood cultures if she spikes again which we are quite convinced that she will because, even though the moderate care doctors won't admit it, SHE IS WITHDRAWING PEOPLE!!! grrrrrrr. We just think that she is not withdrawing quite so severe as other children. Low cardiac output could be another reason for fevers but her symptoms are even different from that. So, with a little Tylenol and we luke warm washcloths, she comes down nicely and is our happy little girl again. They just have to expect her to be doing this after being on constant sedation drugs for 7 weeks!! I hate to argue with some of the best doctors in the country, but we have seen her at worst and at her best and the mom is starting to come out in me..........picture me as Shirley McLain (sp?) in Terms of Endearment.....give my daughter the drugs!!! Give my daughter the drugs!!!!!
Well, it didn't go that far but I'm obviously still revved up about it since I'm posting this at 2:15 in the morning!!!! WHew!
Jr and I are leaving for Kalamazoo around 2pm tomorrow. We will get the boys for a night so that will be great to have them. Cole has a Thanksgiving program at school that we can't miss on Monday and then I'm back to Ann Arbor Monday afternoon. Jr will be home with the boys through Wednesday and then all three will be joining me in A2 for the weekend. Hoping we can keep them entertained enough to last that long. Otherwise, Jr will just go back earlier if need be. He is then back to work for a while.
Thanks for letting me vent tonight........keep praying and pray for our sanity....I think we have been here way to long and it just might be getting to us! :-)
Love,
Suzie

Withdrawl.....

This could mean a few things in Princess Lindsay's world.......when I don't post for a few days, this is what her stalkers go through and this also means that Lindsay is going through this because of her drug addiction! Yes, she is showing signs of withdrawal by having spiratic fevers, throwing up and being very agitated. She is FINALLY off all sedation medication as of yesterday and is just being given single doses intermittently. So far so good and she had a fantastic day of rest. The only time that they gave an extra dose was tonight around 9pm. What was even better about that is that this time it didn't come with a fever. The last few have, so that is also fantastic! She is getting there and hoping to start the Rituximab early next week. She has also kept down most of her feeds and is up to 65 cc's every two hours. Will probably have to increase soon because she is really starting to get her appetite back. It is so nice to have our baby back again. She is smiling and starting to play a little. She has physical therapy 3 times a week now because she has been in bed for 7 weeks! YIKES! However, the therapist said that she is actually doing very well and isn't overly concerned that she will have a problem progressing with her motor skills. What a tough little cookie!

I have included some pictures of her from the last few days and also one of Meg, the nurse for transplantation services. This is when she was calling UNOS to list Lindsay for transplant. I know, kooky, but I had to have that picture because it was a huge deal! Andrea, and for those of you who might understand, she is listed as a 1A. This is the highest category because of her being in the hospital and on a milrinone drip. So, that increases her odds but will really matter is that we get rid of the antibodies. So, next step, Rituximab next week.

Love to each and every one of you!

Love, Suzie

PS Carlee and Connor are stable and came through surgery very well. The both had their hemi-fontan's today....Connor's was waaay unexpected at only 2 months old!!! But Dr. Bove thought about it overnight and decided that that was what Connor needed. So far so good. The next few days are critical, so please keep them in your prayers.

All I Want For Christmas

is a new heart please....a new heart please.....and maybe her two front teeth too! You never know!! Lindsay's new theme song until she gets her new ticker. That's right folks, the princess is officially listed on the transplant list as of tomorrow. The doctors have decided to go ahead and list her and then go ahead with the medication that she needs to reduce her antibodies. They will get all of her blood tests drawn up in the morning and get things going. She might have the medicine by the weekend. We shall see about that though. Just depends on how quickly the lab moves, etc. She did spike another fever so they still wanted to wait to see if an infection developed on any of the cultures from the last few days. So far so good, but it still doesn't explain why she will spike every now and then. But with a little Tylenol and washcloths, we seem to have it under control when she starts feeling warm. Maybe a little sign of withdrawal but she is eating fine now and again, the mystery continues.
We had dinner tonight with Jason, Amanda, and Carlee. They are here for Carlee's hemi-fontan which will be on Friday. They had to come early for an echo and the cath lab prior to surgery. So good to see familiar faces again!
We left tonight and Lindsay was actually sleeping!!!!!! YEAH! The girl is finally getting some rest and hopefully more of her normal tomorrow. Can't wait to get my hands on her again. Sweet dreams and praying that her new heart comes soon!
Love, Suzie

Princess Update

Hi there.....yes, it is a post from Suzie....finally! Well, we got in last night around 2am because Lindsay spiked a fever. Still not sure why but we were very concerned but relieved when the blood tests came back fine and lactate level was fine as well. We were concerned with that level and insisted that they do a blood gas. The last time that she had blood infection, the lactate level was 11 and then up to 19(I think) and it was then that she had to be re-intibated. This time it came back at only 1.2, so that is a HUGE relief. Normal level is to stay under 2.2 The troublesome part of this is that she is already on some powerful antibiotics and infection would be pretty uncommon. So, the mystery continues...........She has also been throwing up a little while after she eats. So, after a few times of that, we recommended that because of her reflux, that they switch her back to the Enfamil AR which she was on prior to all of her last operations. Seems to have worked because she hasn't thrown up since!! WHOO HOO!!

We still haven't spoken to the transplant doctor but we know that she is booked for the antibody reducing drug, rituximab, sometime this week. I have pasted a link so that all of you can read about what it does for pre-transplant patients. Basically, this form of chemo drug will reduce the antibodies in the body to help prevent rejection after the transplant. http://www.circ.ahajournals.org/cgi/content/full/116/11_suppl/I-172

After all of the commotion last night, Lindsay ate just over 90 cc's IN A BOTTLE!!! and then straight to sleep. This was also very re-assuring because she hasn't really slept well at all in the last 48 hours. Just very fidgety and acting like she was uncomfortable. Of course we had all kinds of doctors on her and we were pretty certain that she had bought herself back into the PCTU. Actually, we wouldn't have been shocked of that is what we had to do. I really think she needs that one on one with the nurses but we know that they will send her back if they think that is necessary. So, off to hold and feed her again!!!!!!! Enjoy the new photos........

Love to you!

Suzie

We Can Beat Ohio State

OK, this is sooooo cooool. We actually have a great chance at beating Ohio State with this "Gift of Life Challenge". We've all seen the request on this blog to donate the gift of life to Lindsay this Christmas. Do it before Nov. 21 for an opportunity (maybe our only) to beat Ohio State!


Wolverine vs. Buckeye Challenge for Life
The University of Michigan is taking on Ohio State University again this year, to see which school can sign up the most people to its state organ donor registry before noon on November 21. The winning school gets the trophy and bragging rights for the next year.
You can help Michigan beat Ohio State by signing up on the Michigan Organ Donor Registry.
Check out the scoreboard on the Go Blue page, and encourage your classmates, friends and family to sign up, too!
GO BLUE!

Just another short update to fill the void

The princess continued to be very fussy all through the night on Sunday and all day yesterday, so morphine was given to calm her down. It's kind of a catch 22 weaning her off the drugs and not upsetting her which can't be good on her heart. There is some withdrawl going on. They were also giving Lindsay more blood which has to stop so she doesn't build up any more anti bodies.
Suzie and JR are waiting for an update from the transplant Dr's as to when they think they can start this chemo and she will explain this to all of us when that is to start.
The Jone's arrive tonight with Carlee which will be a great sideline for the Deans. Even though they will both be preoccupied with their daughters, maybe they can have breaks together and have some "fun" if that's at all possible.
Heart Hugs,
Linda

A visit with the Princess

Bill and I went over to Ann Arbor this afternoon to restock the Dean's fridge with some home made soup and some meals from Tina. This should have them set for the week. Thank you once again Tina!

Lindsay's move into moderate care was postponed yesterday, but she was moved there today by the time we arrived. She was unusually fussy, so they were trying to figure out what was up with that. Many things could be to blame, they just want to find out right away what it is. I enjoyed watching my daughter (you know with the honorary RN degree) point a few things out to the new nurses in charge. She really knows her daughter! Then, we witnessed how Suzie and JR talk things out about what to do. What a strong couple they are. Their plan is to both stay for the week and JR come home next Sunday to work the next week.

I did get to hold Lindsay for the first time in TWO MONTHS! I was all garbed up with plastic but enjoyed it never the less.

I know all you stalkers hate voids, so I just thought I'd write tonight just to let you know what's happening.

Heart Hugs,
Linda

Short post.....

Hi there~ I will fill everyone in on the details a little later as to what our next step is but we have to run right now because our baby is being moved to moderate care!!!!!!!!!! Can you believe it? It has been 7 LONG weeks since we have been there!!! It will be a little emotional to leave today I'm sure, with all of the wonderful doctors and nurses. But, we will be back. I will get to more of the update after we get her moved. We will have a computer right in her room now!! WHOO HOO!! Enjoy the picture of her playing with a rattle for the first time :-) Talk soon~

Suzie

PS All of you deer hunters today.....BE CAREFUL!!!!

FUNDRAISING OFF AND RUNNING

For those of you that need your daily hit on Lindsay news.... She had a new pic line put in yesterday afternoon and the Dr's have decided that they will re-evaluate her today. It seems her stats are so good, that they're going to make a decision what direction to head at this point. The Princess might be ready for the chemo to begin to prep her for a transplant. After their all day pow wow, we'll get an update what's in store for the Princess.

Fundraising is off to a fantastic start. Beginning with the bake sale of all bake sales, the committee is selling poinsettias like crazy which includes churches and banks that will be displaying Lindsay Poinsettias this year. Hundreds have already been ordered!

If any of you want to participate by getting your church or business involved, please let us know at ultratravel@jasnetworks.net Orders must be in by Dec. 1st with Delivery Dec. 6th.

Please join us on the link to the other blog (Sharing the Love) to keep informed on the fundraising efforts. You won't believe what we're up to next.

Thanks,

The Lindsay Dean Heart Fund Committee

NEW FUNDRAISING ADDITION

Please visit the new addition to Lindsay's Blog by clicking the "Sharing The Love" icon on the right side of this blog.
This will take you to a separate section with updates of all the fantastic fundraising events going on to help Lindsay's family.
Check back often because we have some GREAT events in the planning!
As you might well imagine after 5 weeks in Ann Arbor in intensive care, 5 open heart surgeries, and a heart transplant in the future, it's our time to help!
The committee for the Lindsay Dean Heart Fund is open to any and all of you that would like to help this family in their time of need.
We also welcome any ideas you might have as a fundraising event.

Happy Birthday!

Happy 5 month Birthday to the Princess!

We love you so much baby girl. Keep getting stronger everyday!

Love,
Mommy, Daddy, Cole, and Cruz

*Happy 7 month birthday to Brooke! We miss you..........

Miracles DO happen!!!

I have been following this little girl, Mia, via Annabelle's blog that has been waiting for a new heart now for over 90 days...........well, here is where the miracle comes into play. She got her new heart today!!!!!! I have added her link to Lindsay's so that you can follow her progress. What an amazing day! I was just telling JR that I was going straight to bed tonight after seeing Lindsay, he said...Yeah right!, but wanted to check the blog first to see if anyone else left a message. Got done with that and then went to Annabelle's to see what Rebecca has been up to and then my usual, to then check on Mia. To my surprise, I read the exciting news. It actually happens and is so nice to read about a success story when we are headed in that same direction at some point. Mia has a long road ahead of her so please pray that her body accepts this new heart and please pray for the family that lost their baby but that they find peace in the fact that they gave new life to another precious family. God is good and certainly works miracles!

Now, to Miss Lindsay. She has been a mystery but tonight I think we cracked the code. She has been a little cranky and acting very fidgety lately. White blood cell count was up a little but will keep an eye on that and another check will be yet this morning around 4 am. So, guess what.....she is in pain when she pees....grrrrrrr. Placing bets now, again, on another UTI!! Can you believe this?!! We won't know for sure for probably a few days because the culture has to actually grow something before treating it. I asked them before taking the catheter out if they could start her on something just in case but was told because of her VRE, they really can't do that unless diagnosed. So, we wait. SO FRUSTRATING!! Please pray that she recovers from this, whatever it is. No serious fever thus far and her rate is very good. Come on baby girl!!

On the brighter side of the last few days, Lindsay has been smiling allot and we were able to get long hold times. Nothing like looking right into her beautiful blue eyes and having her smile at you. Yes, I'm sappy, I got tears in my eyes....;-)

Sweet Dreams......

Suzie

NO VENT!!!

Lindsay is vent free! She is doing great, looks great, and weening off her meds nicely. She is still very sleepy and we still haven't held her yet. She gets flustered easily so we just let her be. She is up to 19 cc's per hour on feeds. She got her ART line out, which I might have already mentioned, and she also got her catheter out as well. Now back to changing diapers! The small things that make us parents happy! Crazy as it sounds, she has been fed now for two days and still hasn't pooped. So, guess what? Please pray for poop. We don't want the princess to get constipated.

My boys arrived last night and it felt good to fall asleep with them last night at a decent time! So, that explains why no post last night......We are enjoying the boys at a hotel tonight with a water park. They are having a blast and we will go back to A2 tomorrow afternoon. The RMH is fine but the kids end up getting bored and are too high strung to be quiet when they need to be. The walls in that place are paper thin and for some reason, especially Cruz, they don't understand that concept. I just called to check in on Lindsay and she just got her bath and resting very well. Hopefully we can cuddle tomorrow.

Blessings to all of you!

Suzie

Restful day

Lindsay has had a great day of peace and rest. The plan is to extubate tomorrow!!!!! She started to get her steroid medication to reduce swelling if it were to occur during extubation and at 4am they will stop her feedings. Yes, she got fed today and tolerated it just great! Now, they take it away to eliminate the chance of her throwing up. I am thinking after the docs do rounds, they will go ahead and take her tube out. I am so excited because I so want to hold her! It has been over a week now without cuddle time and I can't stand it. Please pray that she has a good night and heals even more before the vent is gone....hopefully for good this time...or at least until the next surgery. :-) Did you here that Connor? Keep that tube out!!
It is an even bigger day tomorrow because ALL of my boys are coming to Ann Arbor for the weekend. Yes, JR is bringing Cole and Cruz. Hopefully the weather will cooperate. If not, I really need to put my thinking cap on for some fun things to do with them. Cruz keeps asking about "Lily", so he will be excited to see her...and better yet, without her vent!
I had surprise visitors today.....Dad, Sue, and Sara came to visit. What a nice surprise. I just happened to open my eyes after starting to dose off in the rocking chair at Lindsay's bedside and there was Dad. They had to get their "fix". She opened her eyes while they were here. What a nice treat today.
Well, need to get to my emails since I haven't checked them ALL day. I will post tomorrow with photos of the princess.....tubeless!
Love,
Suzie

Blessed again!

Lindsay had a very restful day. No big excitement which is a good thing. The only potential problem that has occurred during the day is that the new arterial line in her arm is leaking quite a bit. Hopefully with it staying at the correct angle, it will be fine. I really can't think of anywhere else that they could stick her. Poor baby. Please pray that the line stays in place and that she continues to make progress and rest. Still no vent removal but that is fine for now since she is making progress and healing up. Maybe by Thursday it looks like. Well, back to CNN.com to try and catch the Obama Presidential speech! Love to you all!
Suzie

Kalamazoo Gazette Article

Forgot something.....

very important! Lindsay also had her PICC line removed!!!!! They sent the tip of it to the lab to see if it grows something but not so far. That also means that she is not getting the Lovenox shots anymore!!!! Yesterday afternoon was about 5 hours shy of 24 hours without it and it was like a switch turned on. Legs warm, arms warm...hmmmmm. She is a mystery for sure. I will update after I see her yet this morning
Love, Suzie

Yes, for all of you Kalamazoo people, please save a few copies of that article for us. I need to get one laminated and one for her memory box. Thanks! Man, is she turning heads or what?!!

No News IS Good News!

Since I got back last night, Lindsay has made improvements. Especially today. She is still on the vent but the good news is that now she has really good warmth to her extremities which means that her body is letting that blood flow return and the infection seems to be decreasing. She is secreting an enormous amount of mucus which is a good sign that the infection is working itself out. I do have to tell you that when I felt her legs and arms this afternoon, it was like a weight was lifted off of my shoulders. She was finally warm again and starting to become our baby again! She has a long way to go but we are taking steps in the right direction now. God is so good to us. We have dodged another bullet that realistically could have taken our baby away from us but the good Lord has pulled through for us once more. Keep praying for her. God is hearing every single one and is proving His almightyness!

On the medical side of things, she has been weened of her Dex and of her Dopamine today and seems to be handling that just fine. She still has morphine, milrinone, and antibiotics on board. She has started sprinting. The blood gases aftewards have been really good but they don't want to rush removing the vent. Lindsay likes to take her time and they are really beginning to understand her demands! ha! Looks like another day for the vent so maybe this time tomorrow, it will be gone. One step at a time.

As far as our weekend with the boys......was WONDERFUL!!!! They had so much fun Trick-or Treating and Cole was so excited to see us when we picked him up from school. His face was priceless. Then of course, I cried! I saw tears in Steph's eyes too. ;-) Beautiful moment to say the least. We took Cole out for lunch and later in the day, after he had is nap, we picked up Cruz. He was equally excited to see us. I cannot remember a Halloween with such perfect weather. Again, God was on our side again. Made it possible for all of us to have a Happy Halloween! JR stayed home and is now back to work. Fresh out of vacation time. Bummer.....I miss him here but he will be here again on Thursday evening and will be bringing the boys with him! I have to start thinking of things for them to do!

Again, as always, we appreciate from the bottom of our hearts, all of the love and support from family, friends, and complete strangers that check in on Lindsay. I know that you all think that we are strong but we wouldn't be as strong as we are if it weren't for all of you. You help us to stay positive in your messages and give us strength when we are feeling down. WE love you all and keep checking in on our princess. We love her so much!! Keep fighting pretty girl. There are lots of people that love you!!!!

Love, Suzie