Happy Birthday Daddy!!

Happy Birthday Daddy!

Cole and Cruz got some craft time at the hospital today too.

JR had a great birthday with the kids all together. That's a concept huh? ha ha We finished the day off by having dinner at a Mexican restaurant here in Ann Arbor and man, was it delicious! The margaritas and all! :-) Here are some photos from the day.

Lindsay: She had her blood drawn yesterday and still don't know if she will get her Rituxin on Monday or not. I will update when we know. Keep the prayers coming for that angel heart to come but also know that we are very grateful because she is "healthy" in the meantime.

Please keep lifting the Gledhill family up in prayer as well. They were told today that Gracie is not a candidate anymore for the Berlin Heart. This is a major setback and a miracle must occur for Gracie to live. Please pray for that miracle.

Heart Blessings and Love,

Suzie

Still wonderful!

Such a sweet face!

The Dean family of 5!

Mike and Lindsay

Vicki and Lindsay

Never thought brown would be a good color on anyone!!! ha ha

Lindsay has had another great last few days. She also had some visitors today and thought we would share her social time with you. We look forward to more visitors on Sunday! Enjoy!

Love, Suzie

PS Keep Gracie Gledhill in your prayers. Her Berlin Heart is on the way to help try and save her life! Oh how my heart breaks but miracles have happened for Gracie before and certain they will again. Please pray for her.

We have a winner!!

The Lindsay Dean Heart Fund Committee is proud to announce a winner in the "guess the candy hearts" registration game that was recently held at our Sweetheart Dinner. It was won by none other than Mr. Terry Vanderberg from Dimondale, MI. Terry guessed 613 little candy hearts and the correct number was 606.
Terry won two raffle entries for our Cruise Raffle for a Cruise for Two on Royal Caribbean's Freedom of the Seas sailing December 13, 2009 for 7 nights.
As soon as we have our actual raffle tickets ready to go, we'll announce it on the blog and make it available for everyone to participate. The drawing will be held May 29, 2009.
Congratulations to Terry!

Lindsay is getting active!!

Lindsay and Missie

Lindsay and Jessica

We even got to take a stroller ride!! First time out of her room since November!!!!!

Our happy girl with her new toy.

She is getting bigger everyday! She is now 6.2 kilos (multiply that by 2.2 and you will have pounds) and 67 centimeters long!!!!! Her two bottom teeth are also starting to pop through. They have been trying to make their appearance for about 2 weeks now but haven't broken the skin yet. Tylenol is helping with the pain.

Last week before I left to go home for the weekend, I finally got her new toy put together. Yes, she now has an exersaucer and just loves that thing! I get tears in my eyes when I watch her play in it. She is soooo happy and loves to look at herself in the mirrors. It is like looking into a child's eyes on Christmas morning. Oh, the best thing ever!!!! I have also included some pictures of Lindsay with her visitors from yesterday. Jessica and Missie came to visit for the afternoon. Mom also enjoyed a nice meal with them other than one at the RMH! Thank you girls!!!
Lindsay has had a few tense moments this week but nothing crazy and the main thing is that everything is just fine now and is as happy as pie. She will have her blood draw tomorrow and Rituxin will probably be at the beginning of the week. Please pray that the Rituxin and CellCept combined together is the magic ticket! This weekend is my husband's 9 1/4 birthday. If you are confused, he is a leap year baby. :-) Anyway, all of my boys will be here with me in A2 this weekend and look forward to us all being together for his birthday. JR will then stay through the middle of next week with the princess and I will head home to take care of some things at work and spend some more time with the boys. It worked so well last weekend knowing that someone was here with her. Because of that, I could totally focus on what I wanted to do at home without worry about her every second that I was away. So, we will try it again! Thanks honey. Teamwork!!!
Also, please keep Gracie Gledhill in your prayers. She is still on ECMO and is struggling. Hope is still alive though as from the recent post, her heart may be beating more now than the day before. As I wrote on her blog, Dear heart.....Pump baby Pump!!!!!!!
Oh, these babies are so fragile. Enjoy the new photos of the princess!!
Heart Blessings~
Suzie

Prayer Request

Please put heart baby Gracie Gledhill(linked to Lindsay's blog) in your prayers for the next days to come. Gracie received her angel heart after only being listed on the heart transplant list for 3 days!! She has her new heart but it is not working like it should. She came out of the transplant surgery and is on ECMO. Because they think that Gracie got a bad heart, they have re-listed her to get another. We all know how long this can take so pray that a miracle happens and that another angel heart becomes available soon. Please also pray for the family that lost their beautiful baby but selflessly gave a chance at life to another precious being. Oh, how I agonize and dream, all at the same time, over how we will feel the day that we get the news that our princess is getting her new heart. I know that sounds weird. It should be how joyous that day will be! And it will, but I won't be able to keep from my mind that another family is experiencing the loss of a child. A new heart for the Lindsay will be a dream come true, but with that comes so many other emotions that are indescribable and that is what the Gledhill's are experiencing right now, I'm sure. Please lift them in prayer.
Thank you so much,
Suzie

Very Quick Update

Hi all! Well, I am home with the boys this weekend and JR is in Ann Arbor with the princess. Lindsay has had a fantastic week and we couldn't be happier about it! Lindsay also got a new toy this week and I will post pictures as soon as I get more than a five minute break here at home. :-) I hate to be so short, but I know allot of you were wondering on how Lindsay was doing and I also wanted to mention that I cleaned out my email inbox so people can email me again! Sorry Katie! Gotta run for now...............talk soon!
Love, Suzie

New photos of Lindsay!!!

Lindsay just loved snuggling with Kyle during our visit on Thursday.

Before I left to come back to A2 on Thursday, this is what Cruz looked like about 10 minutes before I wanted to leave.............oh, and Lindsay's room had blue marker all over the WHITE walls along with her furniture and some of the bedding. The blue was obviously on his face but he also managed to color the bottoms of his feet and the palms of his hands. Mom was really mad but thanking God that it was WASHABLE marker. I really want to kiss the person who invented washable markers!!!!!!!

If the look on her face doesn't look like a look her youngest brother would give..............WOW do they look alike! Minus the dark hair........

Spending time with my Aunt Marva. She was so happy to get to hold me this time around. I miss you already! Come back soon!

Aunt Carole and Uncle Robb are always all smiles when they hold me! Have fun in Florida!

I forgot to mention in the last post that Lindsay has also started 26 cal formula. She was at 24 cal and the doctors want to start beefing her up a little to prepare for transplant as best as possible. So far so good. It was so nice to see Lindsay tonight. 2 nights away is too many!!!! The reason for being away was incredible though. We are still overwhelmed by all of the support from our family, friends, and our community. Saturday was a HUGE success and we were so glad that Lindsay was behaving in A2 so that we could be there as well. We are so lucky to have each and every one of you in our lives! Blessed.

Heart blessings~

Suzie

This weeks update with the Princess

Lindsay's new princess bow from Danielle H. in Kansas! We are saving the other she sent for a very special day. :-) Hopefully all of you will see it someday soon!

Cole, handsome as ever, Friday night waiting to give the new King his crown.

Lindsay's 1st Valentine's Day! We think red is definately her color!

Hello everyone! Happy Heart Day!!! Well, since all of the news of the auction has been up for a while from the committee, I thought I would finally post news about the Lindsay. She has had a great week! Besides being told again that the Hemi is not an option for her, she is making great strides with her K (they increased her oral amount given with her feeds which lowers her amount given by IV during certain parts of the day) and as of 2 days ago, she has started another antibody reducing drug, CellCept. This is taken orally twice per day so let's pray that this one is more effective. They are, of course, not promising anything, but this could be the magic drug or it could not. Rituxin is on the menu for the week after next. She has been keeping most of her feeds down minus a few throw ups every now and then. I am really surprised that she isn't throwing up more often because of all of the drugs that she is on that are supposed to irritate the stomach. Yesterday the docs had their weekly transplant meeting and I haven't yet heard about the next plan of attack for Miss Lindsay or if anything right now. You all know she has to take baby steps! I left yesterday in the early part of the afternoon and didn't get a chance to catch up with any of them. I will probably get the lowdown on Monday. I have a cute Valentine photo of Lindsay but I am on the wrong computer to post it. I will share a little later today. Well, we are looking forward to seeing everyone this evening at the dinner. We have been so overwhelmed by the generosity of others that I am an emotional wreck. So, tonight, if you see me crying, that really doesn't mean that anything is wrong, it's just the I am overwhelmed and my hormones are just taking me over!!!!!! Last night was also an emotional one too. The student council at the local high school, Parchment, ran an all week fundraiser coin war and t-shirt sale to raise money for the Lindsay Dean Heart Fund. There efforts were simply amazing and the wonderful thing about it was that it was children doing this. We just lost it when we heard the amount that was raised! It was also homecoming for the high school and the student council had asked if Cole would like to participate in the crowning of the King and Queen ceremony. Of course the answer was yes and we all watched Cole carry the Kings crown last night dressed up in a tuxedo and everything! He did a fantastic job and we were so proud of him for doing this! We are blessed in so many ways and we can't help but get emotional on how Lindsay has touched the lives of others. It will be a long hard road ahead of us either way and we just simply ask that you all keep praying for our sweet heart baby girl. God bless you all and see some of you this evening!
Heart blessings~
Suzie

Final List for the Silent Auction Feb. 14, 2009

Silent Auction Items
For
The Lindsay Dean Heart Fund
Sweetheart Dinner
Feb. 14, 2009
Phone bids may be made by calling 917-406-2317

Bidding closes at 8:00pm for the following items:

ITEM #

1. Dale Jr. 2008 #88 AMP 1:24 scale die cast car (not autographed)
2. Brad Stroman Market Baskets Print
3. Dean Clark Original Watercolor Macaw Print
4. Dean Clark Framed Watercolor Print “In The Moonlight”
5. Jim Shore Cross Town/Church Hallmark on lighted ornament holder
6. Jim Shore Noah’s Arc Cross on Hallmark lighted ornament holder
7. Framed and Matted Wildlife Print….Nuthatch
8. Framed and Matted Wildlife Print….Downy Woodpecker
9. Framed and Matted Wildlife Print ….Female hummingbird
10. Jonathon Morgan Wildlife Photo
11. Bow Box
12. Recipe Box
13. 1923 S Silver Dollar
14. Wine Basket from Holly’s Vineyard Mary Kay Gift Basket
15. The Body Shop Basket
Premier Design Jewelry (items 16-19)
16. Necklace, bracelet and earrings
17. Pearl necklace, bracelet and earrings
18. Angel Pin
19. Heart bangle bracelet
20. Kalamazoo Blues CD: Tom Duffield & Greg Ross
21. Piano Blues Solo CD: Tom Duffield
22. Five 1-hour baton lessons with Kyle Keiser
23. Pottery Bowl by Brenda Terberg
24. 60 minute massage with Mikelyn Otten, CMT at Allure Salon Professionals
25. Hair cut, blow dry and style with Linda Terberg, Gemini Styling Center
26. Glass Heart by Judeth Konesni
27. Glass Fish scene by Meints Glassblowing
28. Black Crystal Beaded Necklace with Matching Earrings
29. Pink Swirled Beaded Necklace with Matching Earrings
30. Four Strand Beaded Necklace with Pendant and Matching Earrings
31. Round of Golf for Two at Lake Doster Golf Club Including Cart
32. Homemade Greeting Card Basket


Bidding closes at 8:30 for the following items:

33. Kellogg’s Cutter & Buck short sleeve golf polo – Black with racing logo (size L)
34. Home Made Afghan by Grandma DeVito
35. Faux Coach Purse
36. Beauty Control Gift Basket
37. Vallar Salon Gift Basket of Services and Product
38. Belleek Vase
39. Casey Mears #5 Kellogg’s 1:24 scale die cast car (AUTOGRAPHED)
40. Pedicure by Jess at Ultra Tan & Travel
41. Light House Print
42. Masterpiece Memories Scrapbook Kit
43. Outdoor Portrait Session with Michael Terri Studios
44. Weekend Getaway at a LOG CABIN in Irons, MI (Any available weekend)
45. Dean Clark Framed “Family Building Sandcastle on the Beach” Print
46. One Hour Massage from Ute Englemaier
47. Weekend at Pointes North Traverse City Condo
48. Photo sitting by Unique Images & an 8 x 10 Photo
49. Formation of a Limited Liability Company (LLC)
Willis & Willis, PLC, Attorney’s & Counselors at Law
50. One Year Family Membership to The Kalamazoo Nature Center
51. Wooden Pirate Ship with crew (age 4+)
52. Gift Certificate from Allure Salon Professionals with Bed Head Manipulator
53. 6 pack Coke Bottles: Dale Earnhardt Sr. and Jr.
54. 6 pack Coke Bottles: Dale Earnhardt
55. 1998 Hotwheels 12 car Treasure Hunt Series
56. 2003 Dale Earnhardt Jr. Tribute Concert 1:24 scale Action die cast car
57. 2003 Dale Earnhardt Jr. #8 Budweiser-MLB All-Star Game 1:24 scale Action die cast car
58. 2004 Dale Earnhardt Jr. #8 Budweiser 1:24 scale Action die cast car
59. 2001 Dale Earnhardt #3 Orea-GM Goodwrench Service Plus with blacked out window 1:24 scale Action die cast car
60. 1999 Dale Earnhardt #3 Goodwrench 1:24 scale Action die cast car
61. 2002 Kevin Harvick #29 GM Goodwrench 1:24 scale Action die cast car
62. 2003 Kevin Harvick #6 Looney Tunes Chevy Race Truck 1:24 scale Action die cast car
63. 1999 Jeff Gordon #24 Star Wars 1:24 scale Action die cast car
64. 1998 Dale Earnhardt #3 and Dale Earnhardt Jr. #1 Coco-Cola 1:24 scale Action die cast car set
65. $25.00 gift certificate and hair supplies from Melissa at Heads Up Hair Salon
66. Stained Glass Treasure Box by Larry Glades
67. Dichoric Glass Art necklace by Linda Kekic
68. Paperweight by the West Michigan Glass Society
69. Dinner for Two at the Chef’s Table, including wine at Zazios


Bidding closes at 9:00 for the following items:

70. Landscape Forms Bench
71. Autographed T.J. Duckett Football
72. Roy Jones Jr. Autographed Boxing Gloves and Autographed Picture
73. Room Painting by Palco Enterprises (up to $500.00)
74. Two tickets to the Kenny Chesney Concert at Ford Field Aug. 22, 2009
75. Derek Jeter (Autographed) 1996 Pinnacle Baseball card
76. Dinner with Mr. & Mrs. Mayor of Parchment, Rob & Karen Heasley
77. One week stay for two at Club Land ‘Or Nassau, Bahamas
(Any available week – Fri. check in - thru February, 2010)
www.clublandor.com
78. Photo sitting by Portraits by Patti
79. Flag that flew over Afghanistan
80. Air Force Flight Jacket (size Large)
81. Air Force Flight Jacket (size XXL)
82. Two Chicago Cubs Tickets
83. Four (4) U. of M. vs Eastern Michigan (Sept. 19th, 2009) Football Game Tickets
84. Workspace Solution’s Office Chair
85. Hand Held Leaf Blower – The Sharp Shop
86. Teeth Whitening by Dr. David Brown, DDS in Parchment
87. Willie Horton Autographed Detroit Tiger Baseball Bat
88. USA t-shirt (signed by Lindsay Tarpley, Gold Medal Soccer Team Member)
women’s size small
89. Ring
90. Wild Game Dinner with Cooper Twp. Supervisor, Jeff Sorensen
91. One week stay (Nov. 7th, 2009) at Mystic Dunes (Orlando Disney Area)
Golf Resort (1 BR Condo sleeps 4)
www.mystic-dunes-resort.com
Owner Privileges Included
92. An Aunt Ine Heart Shaped Carrot Cake
93. Framed signed Southwest USA Print by Lee Burdick
94. Gift Card from European Spa for a Makeup Session with Bare Essentials Products
95. Kristen Kubo Large Framed Nature Photo
96. Two Chicago Bulls Basketball Game tickets
97. Makita 18volt Compact Lithium-ion Cordless 3 piece Combo Kit
98. Snowman Wall Plaque

Recovering Well

Lindsay has had a great day and was back to her normal self today when we arrived at the hospital this morning. However, the cannula was put on because her oxygen sats were still low. She was dipping in the lower 60's to high 50's. This was expected to happen so we weren't shocked to see it on her. She still has it on tonight but I think they may remove it soon because half the time it's NOT in her nose and she stays pretty steady around 74 or so. Also, for all of those on pins and needles about the hemi situation.....we still don't know. It is the weekend so we probably won't here from Dr. G until Monday. However, we do know that her pressures were about the same as they were in November so I'm sure that the answer is still no. You can still say a few prayers and cross all fingers and toes though because we are just assuming that that will be the answer. Have a great night and to all of our fellow Michiganders......get out and enjoy this heatwave that we are having!!!! ha ha
Love, Suzie

Out of Cath Lab

Lindsay did well and got out of the cath lab around 11:30. She is very sleepy and resting comfortably now. Procedure started off rough trying to manipulate her tunnelled line and after and hour and a half, Dr. Bocks was able to get in and start the cath. After that, everything went very smooth. We do have to say, Dr. Bocks looked exhausted afterwards! ha ha We are exhausted so we are leaving for a while and getting a nap in while the princess is doing the same. I will post a little later. So far, no cannula and just blow by to keep her sats up while she is sleeping and on drugs. Looks good as of now though. Thanks for praying.......we will speak with the doctor later about her pressures.....aghhh The agony of waiting!!!! Now I know what our stalkers feel like! ha ha
Love you all!
Suzie

Back to the cath lab..........

and praying for good results! Well, let me first explain that we are going to the cath lab for a new PICC line. Yup, a new one. Since one of the lines of the PICC started to leak, I guess standard procedure is to take blood cultures. Well, the cultures came back with one positive and now we have two negatives since they started her on antibiotics. So, tomorrow is the day and the new PICC will be in her left arm instead of in her leg. Hmmmmmm...what to have her wear now will be a challenge. :-) Ok, now I was given all of this cath lab information this afternoon and there was also mention of getting actually pressures for the Hemi-fontan. Confused yet? ha ha Well, I was too at first but apparently after firmly saying "no" about the surgery, it must have been on the minds of the important decision makers since we will be in the cath lab anyway. I think they may want to see for sure since Lindsay is so unpredictable with what she will do next. Let's pray that her pressures are definitely below 10 or 12, then she may be a candidate. Consensus says that her pressures will be higher than that but we will find out tomorrow afternoon. She will be first case in the lab and that will be at 8am. Please pray for low pressures and that we can have the hemi as an option and then we can wait for her perfect heart at home!!!!!!! Not getting my hopes up, but miracles happen and it never hurt anything to ask.
On a lighter note, Lindsay had more visitors this afternoon. Aunt Marva, Aunt Carole, and Uncle Robb came to see the princess. She was so happy and playful for them. Needless to say she put smiles on their faces to last them until the next time that they see her. After our great visit, they took me out for a very yummy dinner, including a glass of wine for myself, and now I am ready for bed! JR will be here bright and early in the morning to sit with me while Lindsay is in the lab. This just makes us nervous because her previous visits have not been very good and she comes back on oxygen. Praying that she withstands everything tomorrow and that she will be back to her old self in no time. Thanks for the continuous flood of prayers for the princess.
Love, Suzie

Eventful last few days.........

Lindsay with Uncle John and Aunt Pam from Iowa. Cousin Chris came too but didn't get him in a photo. Thanks for coming to see me!!

Lindsay with Uncle Rick from California.

Lindsay with Grandma

Lindsay with Kirk

Lindsay with Jody

What is impressive is that she was able to stay in the same outfit for all the visits! ha ha

Subject #1~Needless to say, Saturday was a wonderful day! Having visitors here in Ann Arbor was great and we really enjoyed talking to some other people besides nurses and doctors.......NO OFFENCE to our wonderful medical staff! :-) Lindsay was definitely tuckered out but was able to nap between visitors. She was awake and smiling for everyone! I have posted photos of the great day! We love you all! Yes, Aunt Debbie and Jennifer, we missed you too!!

Subject #2~ As some of you may know, I went home for a few days in order to attend Cole's school conference on Monday evening. The boys, JR, and I headed home on Sunday and Lindsay was doing just fine. Just before we left, she had a leak in one of her PICC line extensions and the result of the was that it needed to be re-wired. When we all arrived at home, I called to check in on her and the re-wiring was going to take place on Monday at noon and has to be done in the cath lab of all places. Now, we know the princess does not do well in the cath lab so the decision was that I was headed back to A2 Monday morning to be here for the procedure. Chances are that she would come back on oxygen, etc. Well, because she was having increasing temperatures but not officially a spike, they went ahead and got on top of getting cultures to see about an infection especially with the new issue with the PICC line. So, the culture came back as a "possible" gram positive. hmmmmmm. Because it was a possible, they drew another and still waiting on results from yesterday's and today's. She will need two negative results before they re-wire the line in case the infection is in the PICC line. Otherwise, we would have a HUGE problem! So......we wait. In the meantime, Lindsay had to have another line put in in order to get her Lasix and Diuril. Because milrinone and the diuretics are not compatible, it is necessary. Well, that line was in her arm, and today it clotted off. So, she had to get poked again and now the line is in her foot. So far so good with this one. Also, they are not too crazy about getting blood gasses from her PICC line in fear of loosing it, so they have to poke her heals. Her poor little heals look like pin cushions! So, pray that the cultures come back negative and we can get going on re-wiring this PICC line and then back to normal for her.

Subject #3~ We did have a meeting with the transplant coordinators last Friday. We talked allot about plans for moving forward in finding Lindsay her heart. Thus far, Rituxin has not worked that great. It is working but not well and fast enough. There are other medications to try when we need to but they are very harsh and actually have "chemo" consequences such as hair falling out, vomiting, etc. We are not to that point yet, but it is out there. Another thing that we learned is that latest studies show the Rituxin is really pointless to use more than once a month. So, that is what we will be doing. Apparently the new tissue specialist, or something like that, was in town and Dr. G and Meg spoke allot about Lindsay. In the meeting, we also spoke allot about her trying the hemi-fontan again. They said they would speak to Dr. Devaney(surgeon) about it and get back with us with what he says about it. Really, the cardiologists could agree that she couldn't do it but it is really up to Dr. Devaney. The surgeon really has the last say if things make sense. Well, we heard today that the hemi is officially off the table. Her pressures are just way to high and that we would most likely end up in the same boat as last time. Talk about being bummed out today!! Now, transplant IS our ONLY option. So, please continue to pray that we find a tissue match for Lindsay and that she will be able to come home with us. We know God can work miracles but just praying that Lindsay is on that miracle list to be checked off....and soon! On the other side of this, we are praying for a heart and that heart has to come from come other little baby. I cannot, even still, think about the pain another family will have to go through in order for this to happen. This pulls at our heartstrings in ways that are unimaginable. Today, of all days, I wish I could get a preview of what God has planned for Lindsay.

I think I have given enough information today that will last everyone a while. Enjoy the photos of the princess. She is still a very happy baby and we are thanking God for our good days with her.

Much love to you all~

Suzie

Prayer Request: I came across the blog of soon to be born Lilliana the other day and proud to announce that she came into this world in the wee hours of the morning today happy and breathing on her own. She too has HLHS. Please pray for this family and the endeavours that they are about to come upon. They have her in the NICU right now and just evaluating and deciding when to do the Norwood. Please feel free to follow their journey along with me.