Monday, December 29, 2008
Before I forget to add this, I'm going to do it right in the beginning. My good friend Patti has graciously given me a link to a slideshow of all of the wonderful pictures that she captured on her visit to Ann Arbor a few weeks ago. She, again, did a fantastic job and we are so very lucky to have had her to take these precious photos for us. Enjoy! http://www.pattisportraits.com/clients/slide_show.php?viewGallery=1092
Update on Lindsay:
Well, we are in PCTU again because of a potassium issue. This time she had the irregular heart rhythms and a dip in her heart rate because her K was too high. So again we are going through the steps of tweaking her and so far so good. We received the phone call the morning before last and JR and I thought it was THE call. Talk about our heart rates jumping into a high level!!! It was 4:30 am and the doctor was just calling to tell us what had happened and that when we came to see her in the morning, that she would be in the PCTU for more monitoring. The good news is that none of this is a heart issue and just regulating her potassium. We have also started her on oral feeds again so that is especially nice because we haven't done that now for over a week! She will be on 60cc's every two hours for a few days and then we will get back to the 90 cc's every 3 hours. They also have backed down on her diuretics because she was really dry. She has also not been gaining weight like they want her to so hopefully with the diuretic every 12 hours instead of every eight will help. She needs to get beefy to prepare for that heart!!!!
Again, sorry it has been a while since I have updated. We sure do appreciate the continued support and prayers for our family. Keep them coming because my husband has an incling that the heart is coming soon. Let's hope he is right on!
Love you all!
Thursday, December 25, 2008
Lindsay's story aired on WWMT TV Christmas Eve. Please visit http://link.brightcove.com/services/link/bcpid1111405973/bclid1137706675/bctid5750745001 to view her story. (HINT: to listen to the story, first go down to the playlist and pause the background music of the blog) Let's make it the most viewed video for Christmas Day!
The Lindsay Dean Heart Fund gave back to the community this week by hosting the American Red Cross Blood Drive, The Gift of Life, and The Morrow Foundation's Donor Registry sign up. We're happy to report that the Red Cross ran out of blood bags in spite of nasty weather and we had a record number of first time donors. We have been invited by the Red Cross to sponsor the next Parchment Blood Drive Feb. 17th. Please stay tuned to the blog for further information.
Coming soon.......Our Sweet(heart) dinner and silent auction in honor of our sweetheart princess, Lindsay, February 14th at St. Ambrose Church in Parchment. Please also stay tuned to the blog for further information concerning details.
Have a blessed Christmas Day!
The Lindsay Dean Heart Fund Committee
Tuesday, December 23, 2008
We also just got done interviewing with News Channel 3 and Lindsay's story will be aired on tomorrow nights broadcast. Most likely at the 11pm time slot. Also, Patti (Lindsay's personal photographer) just made my Christmas! She has posted some pre-views on her blog so I urge everyone to take a peak. Just click on her link on the left to view them! Thank you so much for coming to capture these moments that we would have never been able to get otherwise.
I have also posted the video that was played while people were waiting at the blood drive.http://www.onetruemedia.com/shared?p=76f342f96fb68b30d5494b&skin_id=701&utm_source=otm&utm_medium=text_url
Just called and checked in on Linds and the doctors have decided to d/c one of her IV diuretics and do orally. She is a little on the dry side so hopefully it will help. Pretty sure that is will and then she will start to feeling like her self again. Mindy is with her again tonight and she said that she has started to smile a little bit more today.
I will update more later!
Love you all!
Have a great day everyone! And, even if it is not Lindsay's blood drive, please, go give blood. It can save lives!
Love and heart blessings!
Monday, December 22, 2008
I will keep you all posted.
The boys were not so excited to see the Grinch today at the hospital but they were certainly open to taking presents from him! ha ha We did get a photo with him that I will post later. Also, at the Ronald McDonald House, they had a room filled with gifts that parents could pick from for thier kids. We could pick one per child, wrap them, and then have them placed in our room so that when we got back to Ann Arbor, the boys will be excited to see that Santa didn't forget them there too! So cool and what a wonderful thing for RMH to do. Takes a little stress away for families I'm sure!
Tomorrow is a big day for Lindsay and the Dean family. Lindsay's blood drive is tomorrow and then in the afternoon, Channel 3 News will be here at the house to interview us about Lindsay and her condition to raise awareness about CHD's. I am really excited about this and looking forward to seeing people at the blood drive.
Hope everyone is staying warm!
Saturday, December 20, 2008
Friday, December 19, 2008
I found the heart ornaments earlier this year and they couldn't be more perfect! The bummer part is that we can't plug it in. Oh well, hospital rules.............
Lindsay has had a great day again and the boys had a great time in the play rooms today. Of course they saw Lindsay for about 10 minutes out of the whole day and then went and played. That gave mommy and daddy one on one with each of them and that was so nice to do. Praying for another uneventful day with Lindsay tomorrow.
Thursday, December 18, 2008
Wednesday, December 17, 2008
Lindsay had a wonderful evening and I left with her sleeping soundly. She is a princess for sure!
Nighty night for me! Until tomorrow.....and Merry Christmas to Brittney's family! (I now have her linked under Heart Babies.......even though she is not a baby!) :-)
Tuesday, December 16, 2008
Lindsay has had a GREAT day! Her feedings have gone great and still no fevers! She is smiling, trying to play a little, and working hard at her new skill of rolling over. She has developed a new trick as well. She waves with her foot! It is just too cute and the way she looks at it would just crack you up......."hey, I not sure but I think this thing is attached!"
The docs have again adjusted her potassium to every 3 hours and lessened the dose of course too. She was having to many lows and then it would go way high. So to try and eliminate that, that was their decision. They now only have to check her levels every 6 hours which means less blood coming out of her! They also decided to give her her diuretics every 3 hours as well. Oh, and they eliminated her digoxin. I didn't know this before but apparently digoxin can cause arrhythmia's and because her dose was so small, that she would be safe without it. If she seems to act like she needs it, they will just up her milrinone drip to compensate.
Tomorrow is a big day as well. She will be given her next dose of medicine to try and reduce her antibody levels. This medicine is called IVIG. Apparently there are several kinds of IVIG and the one that they will be giving her is called Gammagard Liquid. I will be researching this tonight so that is all I have for you for now. My bet is that Amanda has this figured out before I do! Love ya girl!
That is all for this evening. Stay safe driving out there you Michiganders. It is getting nasty here!
Monday, December 15, 2008
All for now. I will post pictures when I get back tonight.
Saturday, December 13, 2008
Our plan was to leave last night around 4pm to head home so that JR could work this next week. We went in to see her before we headed home and saw that her fever that she had spiked earlier had gone down....meaning that her heart rate indicated so anyway. It went from 145 ish down to 120 ish. As soon as I said, "That heart rate looks a little better", her heart rate went down to 80, and then to 70, and with some irregular rhythms. Just so happened the our nurse, Mindi, had already gowned up for her nightly vitals on Lindsay and was right there bedside with her. They immediately called for the docs and they were also with her bedside in no time flat. All in all, she had low potassium that of course caused the irregular rhythms but not too sure why the decrease in heart rate as well. They ran a blood gas right after the incident and her potassium level was 2. This number should be between 3.5 and 5.5. She has been low before but never to reduce her heart rate like this. Apparently 2 is the magic number. So, guess where we are again.......familiar territory in the PCTU. Yes, in intensive care to monitor the princess for the weekend. I called this morning to check on her and she did have another episode around 4 am this morning so we are thankful that they decided to switch her into the unit. The doctor last night said that because he didn't want a Chinese fire drill in moderate care, he would feel more comfortable if she was in POD A instead. So, she now has her own room because of the contact precautions and we even have a view this time! The princess has a suite! Oh, and the other big news is that she rolled over yesterday! We had just missed it when we came to see her yesterday morning but was able to catch it later in the day! We are so happy for her and that she is actually able to do the normal baby things. As of my last phone call to the PCTU, Lindsay has had another episode with her potassium but because they are on a one to one basis, they were right on top of things and she is just fine. Erica, our nurse today, said that she has been the highlight of the unit and when the others have a break, they come to check in on the happy princess. It is not very often that they have babies that are so active in the unit, so they flock when it happens! She has rolled over again today and apparently we have a mover on our hands. No more leaving those bedside rails down anymore! I can't wait to see her when I go back to Ann Arbor tomorrow.
Thursday, December 11, 2008
Wednesday, December 10, 2008
I worked at Cole's school on Monday. He was so excited about that and especially excited that he was able to hand out the snack. Weeeeelll, Mom forgot the snack! It was my first time working and never occurred to me that that was one of the responsibilities of a working parent. OOPS! Sorry kids. I especially felt so bad for Cole but all of the kids just went and played like it wasn't a big deal. I will make it up with a supped up snack next time! Either way, I know Cole was so happy to have me there. It was a special day.
Our new friends, and fellow heart family, The Hagerott's. Their son, Zachary, will have his surgery tomorrow. Please pray that Dr. Bove is on his A-game as always and that Zachary tolerates all that has to be done to him. These cardiac kids never seize to amaze us with their strength and we are confident that Zachary is one of them. They will have updates on their carepage, I'm sure, as the day progresses tomorrow. If not, look for it in the evening. We will peek in on them as well.
All for now. I will post new pics a little later.
Sunday, December 7, 2008
Friday, December 5, 2008
Thursday, December 4, 2008
As you can see, our princess looks great! She has been playing, smiling, and going for more stroller rides! I was able to rock her to sleep yesterday. Life is good!
The only exciting thing going on here is that yesterday she had a urine sample taken to see if she tests positive still for VRE. If she doesn't, we can take off the contact precautions!! That would be great! Although, it is a catch 22 because of her immune system being down, we still have to be extra careful about germs, etc.
I am expecting visitors today. Aunt Carole, Uncle Robb, and Aunt Marva are coming to visit Lindsay. I am so excited and will share pictures with you from our visit this evening. Thanks for sticking with me and being patient for this post. I know that it has been a couple of days.
Have a great day everyone and for my fellow Michiganders, be careful on those roads!
Love to you all!
PS. Ute, she finally fits into that cute little cherry onsie that you bought her. She looks so good in red! Miss you!
Tuesday, December 2, 2008
Monday, December 1, 2008
Thanks and love to you all!
Saturday, November 29, 2008
I will post more photos of Lindsay later this afternoon.
Love you all!
Friday, November 28, 2008
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.
The Lindsay Dean Heart Fund
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.
Thursday, November 27, 2008
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,
Monday, November 24, 2008
Sunday, November 23, 2008
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! :-)
Saturday, November 22, 2008
Wednesday, November 19, 2008
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!
Tuesday, November 18, 2008
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!
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.
Sunday, November 16, 2008
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.
Saturday, November 15, 2008
Friday, November 14, 2008
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 firstname.lastname@example.org 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.
The Lindsay Dean Heart Fund Committee
Wednesday, November 12, 2008
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.