Getting Lots of Attention Today!

We got the lovely news today that her infection IS in her blood. To put it nicely, AWWW CRAP!! So, because of that, she now is the proud owner of two new peripheral IV's, another antibiotic, and we said our goodbyes to her PICC line that she has had since February. Good job Dr. Bocks for putting that good line in! It lasted ALOT longer than typical. We are hoping that the new IV's last at least a couple of days so that her blood can be sterilized through the new lines and then we can send her to the cath lab to get another one. grrrrrrrrr. Crappy, but something we have to do since she is still on IV lasix and getting a load of antibiotics. Praying for those lines to hold but will be difficult since some of the antibiotics are so harsh and should really be administered through a stronger line, like a PICC. So, prayer warriors on high alert! Pray for the lines to hold there own, the antibiotics to do their job and fight this infection, and for Lindsay to start feeling better. Speaking of that, thank you all for the great comments about Lindsay's new blog photo. I do have to tell you though that that is not her right now. This is one of Patti's wonderful shots of her from just a few days before transplant. Unfortunately, she is not that happy right now and is just plain wiped out. Trust me, I wish it was!
We had some visitors today and had great visits with them all. Aunt Carole and Uncle Robb stopped by for a while and as always, so good to see! We also had a visit from Becky, Layla, and Zelly Muhammad(flew in today from Arkansas) and Cindy Fogg. We had a yummy dinner with them and it was a great distraction from the day that we had......or should I say, that Lindsay had. ;-) Thank you again! We had a great time.
All for now.
Love, Suzie

Infection.....

From the blood cultures taken yesterday, one of the lumens coming from her PICC line tested gram positive. The weird part of it all is that her white blood cell count was lower today than yesterday BEFORE the antibiotics started. Things that make you go hmmmmmmm. (remember that song??) ha ha So, today they went ahead and took a urine sample as well just to make sure the right antibiotics are on board. Lindsay also had ALL of her stitches removed today. Three chest tube sites and her canulation site from being on ECMO. One step closer everyday............
The antibiotics will last 2 or 3 days and hopefully they won't have to pull that PICC because we still need it for diuretics (which they will start to ween starting tomorrow or so), now antibiotics, and for lipids. Her feeds are going fairly well now and she is back to 35 cc's per hour and her goal is 40. The other change that they made was changing the frequency of her Valium dose. She will now be on a 0.1 ml dose (very small but it works great!) every 8 hours instead of every 4 hours from 9a until 9p and nothing at night. With the other, she was snowed all day long and just slept instead of doing physical therapy, etc. Today has been much better and we have seen many more smiles! Praying for even better days ahead!
Love, Suzie

The last few days

The last few days have been pretty low key. Just trying to keep her comfortable and trying to get her to tolerate feeds when we get to the higher rate per hour. X-ray indicates that she has some barium (sp) in there somewhere from the swallow study and really don't want that to get stuck and then bind her up. So, basically, trying to get her pooping so that she will pass that. Then maybe her belly problems will be over. Let's hope so because that is one step closer to blowing this pop-stand!!!!!!
Labs indicated this morning that she had an elevated white blood cell count so they drew blood cultures to see if anything is brewing. She does not have a fever, but has been sleeping more than normal. Let's just pray that she is just healing and not trying to fight off anything. If she is, they are on top of it and then she starts IV antibiotics. If anything, I'm thinking a UTI. hmmmm. Let's hope that I am wrong! Otherwise, all is well and she is gaining every day.
On a sad note, a heart baby passed away here yesterday. Ethin Twigg was born in January with HLHS. He has had a tough road and unfortunately coded yesterday and they could not resuscitate him. Please pray for his mom, Jessica, and the whole Twigg family. We are just heartbroken.
I will update more as we get results. The praying continues......
Love, Suzie

Praying from the South Carolina coast!

Thanks for the photo Kerri! (Mary Clare's mom. Mary Clare is another heart sister of Lindsay's and linked to her page.)

Versed.........drug of choice?

OK, I will explain that title in a minute but first we have to tell you that Lindsay has not one, not two, not three, but four teeth trying to pop through!! OUCH!!!!! One of them being a molar! So, that explains her being irritable.....hopefully. Around 5pm, JR and I ran to Walgreen's to get some teething meds (hospital doesn't carry those....go figure!) for Lindsay to try. They worked for a bit and then we decided to give her a little more relief with stronger drugs. This is where the versed comes in. 1/2 of a dose and she started to clam a bit. We laid her down and she was just starring and admiring her daddy. Yes people, she focused on him and then proceeded to grab his nose!!!! I can''t even begin to tell you how excited we were with that. But, that's not all! We then witnessed her smiling behind that pink passy of hers. Nurse Jen pulled the passy out so we could see that beautiful smile! I sat her up and all within about 5 minutes or so, Lindsay giggled, wrinkled that cute little nose, waved (backwards of course!), smiled some more, played with her PICC line tubes, held her head up without help, grabbed her fabric covered flower that she plays with and swung it around a bit, and actually smacked her lips as if giving a kiss mimicking Jen after she did it to her!!!!!! Can I say that we had a great night!!! This was so exciting because with most of these happenings, she was focusing a bit and we could tell that she could see us! We were watching through tears, but we saw it all! Hopefully the only thing slowing her down right now is her teeth. She will still be getting vigorous physical therapy and her swallow study will be tomorrow morning. This will be interesting to see where her food actually travels to. She will also be getting an echo tomorrow as well. Talk of her biopsy will be next week some time and we are probably moving to the floor or moderate care tomorrow as well. The other highlight of the night was that we were able to dress her! Yeah to getting to wear clothes now! Do you think that I can find something PURPLE to put on her?? ha ha
Here's to miracles today! Keep those prayers coming!
Love, Suzie

Results

Well, MRI results really just showed what we pretty much already knew but also didn't show anything that we didn't. Does that make sense?? In other words, no real surprises. That is good but we for sure now know that she does indeed have damage. The damage is in the part of her brain that controls vision. The MRI also showed other little damaged areas that will effect her motor skills. However, we and the doctors think that is really not a huge issue because she is moving her legs, arms, etc. just fine as of right now. This will just take physical therapy everyday now instead of 2 or 3 times per week as she was before. Back to the vision. We know from just watching her that her vision is definitely impaired. We have been told that her age is definitely on her side and as time goes by, the other side of her brain should compensate and things should be close to normal again. Just later on at some point, she just need glasses. If that is all that she needs after this, get her 5 pair!!!! ;-) Every one is different though and we have to get into the mind set that this may not return as one of the possibilities. By examining her, she is definitely just near sighted if any. Her peripheral vision is not at all as far as we can tell. Praying that time means healing. She is still very weak and to top it all off, she is cutting a top tooth! Poor baby! She was uncomfortable tonight before we left so we broke down and gave her a 1/2 dose of morphine so that she could sleep. Praying that that happens.

I have finally updated photos, so scroll down to the previous posts to see them. Some are not pretty, so I am warning you in advance.

All in all, we have had a good day and look forward to another small improvement tomorrow. Maybe even a ride over to Moderate Care??? I will keep you posted.

Love, Suzie

PS I can't end without saying a big "THANK YOU" to Hearts of Hope! A few of the members brought quite the spread to the hospital last night for dinner and we were very grateful. Thank you again and so nice to finally meet some of you that we have heard so much about.

Uneventful Day.......and Eventful Day

These are the days that we like along with a little progress! MRI is scheduled for 11am tomorrow morning. Please pray that everything turns out fine and that all we need is time for our baby to return to normal. We HAVE time! Otherwise, she is tolerating 10 cc's per hour feeds and all she needs is tylenol to stay somewhat comfortable. AMAZING!!!
Ok, now for the big news around Mott today. Tommy Shomaker, I'm sure, had one of the best days of his life. If you just happened to watch our Detroit Tigers play this evening, you saw Brandon Inge sporting a new "tattoo". Well, he made a special trip to Mott today to see Tommy because the last time he was here at the hospital, Tommy got his angel heart and was unable to see him. Brandon somehow heard that story and made a special visit for him! Anyway, during his visit with Tom, Brandon asked to get HIS autograph. He had Tommy sign his arm so that when he was up to bat, everyone watching would see it. So cool, I KNOW!!! Anyway, Brandon arranged to have it announced to everyone explaining his new "ink". Well, Brandon hit a home run tonight. Here is the link so that you can see this emotional and incredible moment. http://www.bus.umich.edu/Video/Play/?file=other/IngeHomer1&height=513&vol=200

That one was for you Tommy! Tommy probably has perma-grin while sleeping tonight! Love you buddy and we are so happy for you!
I will update when we here results of the MRI tomorrow. Praying..........
Love, Suzie

Wine Tasting Party!

The Lindsay Dean Heart Fund is inviting your participation in a wine tasting party on Sunday, July 12, 2009 at Don & Sue Lumbard's, 4992 West "E" Ave, Kalamazoo. Tickets are $25.00 per person/ $45.00 per couple. (Beer and pop will also be available for those non-wine drinkers). This fund raising event will begin at 1:00 pm 'til 4:00 pm and all proceeds go directly to The Lindsay Dean Heart Fund.

So for a fun filled Sunday afternoon, please contact Sue at: lumbards@bronsonhg.org, or Carole at benefitsplus@hotmail.com for tickets.

This event is limited to 75 people, so please get your tickets early! Door prizes will also be available!

Once again, thank you all for your continued support for the Dean family. As you can see, they still need us more than ever. It is all of YOU who are keeping their heads above water!

The Lindsay Dean Heart Fund

A good day of resting

Lindsay had her 3rd, and final, chest tube removed this morning! WHOO HOO!! She also had another EEG done and will get those results in the morning. We are crossing our fingers that no news right away, is good news. They decided to start her feeds again only at 5 cc's per hour and see if she can handle that through the night. Tomorrow we will address the issue of starting the Enfamil AR again once we get to more volume of her feeds. Also getting her started on Reglan again. Her ileuses look better, but are still there. Thanks by the way to the person that thought of that word for me the other day. ;-) So, we pray for her belly to tolerate her feeds and for her to stay comfortable and heal. Not much else to report. This is just a much slower healing process this time around but we think that she is gaining ground every day. Keep those prayers coming!
Heart Blessings~
Suzie

And the day just got better..........

Lindsay was extubated at 6:30 this evening! It was very emotional to think that less than 1 week ago, we really, truly thought that her journey had ended. But thanks to the whole medical team, prayer and the good Lord above, it continues. I will post more later but was so excited to share the news. Off to hold our baby.........
Love, Suzie and one proud papa on Father's Day!!!!

Happy Father's Day!

Happy Father's Day everyone!
We are back from our little whirlwind trip back home yesterday. We went to watch Cole's last t-ball game, I worked a little, JR mowed the grass, and then back. Whew! Lindsay is making baby steps in the right direction. Her left lung is finally nice and open again and they are going to sprint her a few times today. She is gagging pretty good on the tube, but everyone is reluctant to pull it out, so we will see how her sprints go and if we just can't get her comfortable and all of her x-rays look good, then they will pull it. I can't even believe that we are even talking about that! My gosh, she was just on ECMO less than a week ago! One issue though is her belly. I forget the word that they have been using but basically her belly is still "not awake" enough to handle a higher volume of feeds. She can tolerate the 5-10 cc's per hour and maybe up to 15, but once we get higher than that, her belly gets pretty big and bloated. This might be something that we just have to wait out. We certainly hope so! I know g-tube has been in the back of everyone's minds, but please pray that we won't have to do that. However, if we do, we do. She is off ALL pain meds and sedation meds!! Can you believe that?!!! You are our hero baby girl!
It has been a very emotional week as you might imagine. Lindsay has a purpose in life and God is making her better day by day. Cole was at VBS this week and has accepted Him into his life. I know he is just 5 years old, but when Stephanie told me that story, we couldn't help but have the tears flowing! God is so good! FEAR NOT!!!
We hope all the father's out there have a wonderful day!
Love, Suzie

A day of improvements and rest

Lindsay had a very impressive day of movements. She awoke a little and rubbed her eyes, crossed her legs, and started tapping her foot as she does normally. This a very good sign in regards to neurology requirements. They reduced her morphine down to 10 so she has been moving more, but not officially awake. Her eyes opened today about half way and her pupils are small to medium and responsive, so that is good news. Looks like the MRI won't be until Monday or so and hopefully by then she will be extubated. No one is in a hurry to do that so a good goal would be on Monday for extubation. Her body is reacting like it was transplanted AGAIN so she will just need time. Every day has been better and brighter. Keep praying. It is working!!!
Love, Suzie

Holding Steady and Resting

Lindsay's head CT came back looking about the same as Tuesday's. This is a good thing but they all have decided to do an MRI as well. So that might be either tomorrow or Saturday for that to try and get the best pictures possible. She has been weened from her Adivan, her morphine down to 20, milrinone is at .7 but will ween as soon as she gets her echo tomorrow,and her Epi is only at .01. Must be she still needs that little dose while she rests. Sprints might take place tomorrow, but we are not holding our breaths for that one. She will need time and frankly, it is just a complete miracle that she has come this far already after Monday's events. She has started to wake up a bit which is a HUGE milestone when referring to her brain function. She has moved her arms, legs, toes, fingers, and shoulders. She has blinked her eyes but has not opened them yet. They aren't too surprised with that because with her never have been on phenobarb before, this can make you very sleepy. We are breathing a little easier now but still have a ways to go and especially with her medication regimen.
We were able to get a nice break this evening and go out for dinner with Steve and Michelle Hagerott. We all needed a break and good conversation. It is Steve's birthday today and we were honored to have spent that with them. Thanks guys!
Continue to keep Lindsay in your prayers. Zachary is healing as expected and Tommy is back on the floor, but is still dealing with stomach issues. Please pray that this gets resolved very soon. We love you all!
Suzie

Praying from Mexico!

Nurse Sarah was on her honeymoon and took the time to take this photo. We miss you! See you next week!

One Year Photos!!

Once again, Patti has done an incredible job with Lindsay's photos. She is truly talented and we love her so much for taking time out of her busy schedule for us. ENJOY!!!
http://pattisportraits.com/clients/slide_show.php?viewGallery=1134

PS Patti was also sneaky enough to use the song that I sing to Lindsay everyday, in the slide show......Love it!!!!! sniff sniff

Off ECMO!!!!!!!

As of 5pm this evening, Lindsay is officially off of ECMO! Good job princess!!! So far so good and her stats are looking just great. She still has a lot ahead of her but is again, trucking along. She will have another head CT sometime tomorrow that the neurologists have ordered to see if there is any difference between the one that was done yesterday on ECMO and the new one off ECMO. Again, please pray that they don't find anything alarming and that her brain is functioning as it should. That looks very promising considering that she is handling things so well off ECMO. We love you princess! More updates tomorrow.
Love,
Suzie

Rollercoaster of a day.........seizures

The title says it all right now. Her EEG came back abnormal so she did end up having a head CT done this afternoon. (boy was that the sight seeing them maneuver the ECMO machine, her stretcher, the double IV pole, and the ventilator all at once!)That was a very scary thing for us because who knows what they would find in that scan. All we could do was pray that there wasn't any hemorrhaging and that we could just treat her seizure activity with medication. The results are not officially in yet, but report says according to our nurse this evening that there was not any hemorrhaging detected. THANK YOU JESUS! I do have to say that JR and I were about the most afraid of these results than any other thing that we have been through thus far. Our thoughts were..........we went through with this heart transplant so that she could have a good quality of life. If this was how it was to end up, then why did this angel heart go to her?? Then, we got our answer. So far, test results are ok but will know for sure when we get that "final" report from the neurologists in the morning. Please pray that they are as we think. Her chest x-ray this morning was MUCH better and I am anxious to see what it is in the morning because she looks so much better!!
Lindsay looks amazingly well after all that happened yesterday. She is nice and pink and her swelling has gone down quite a bit. She is peeing well, so no problem with her kidneys. WHEW! The new thing now is that she is hooked up to a EEG monitor for 24 hours so that they can video take and record any seizure activity if she has any. This way they can correctly medicate to where that activity is taking place......is how I understand it anyway. So, after everything is hooked up for that, she looks like she has a mummy head. I will try and post photos later. My computer won't upload right now for some reason.
The other news is that they decided to lower her pressures a bit on ECMO to see how her heart function was and she did as well as expected after all that she has been through. Dr. Crowley would like to have her off ECMO tomorrow. We are not getting our hopes up for that because Lindsay does do things in her own time. So, I will say she will be off either tomorrow or Thursday. To answer a question from a comment that was posted, yes, this means that she will be fine on her own off of ECMO if her function seems to be ok and her blood pressure stays high enough on its own. Again, she may need another day or two, but that is ok with us and the whole medical team.
Another added item is that I just wanted to share something awesome with all of you to prove what an incredible medical team that they have here at U of M. Although I have never seen anything like it in my life, but yesterday as everyone was working so diligently working on saving our daughter's life, I have never seen such an organized chaos!! It was absolutely incredible and not one person missed a beat. We are eternally grateful for every one's effort. God Bless you all!
Thank you once again for all of the continued prayers for our princess. She is proof that prayer works so we continue to march ahead. We are humbled.
With much love~
Suzie

Please lift the Hagerott family up in your prayers this evening. Zachary will be having his hemi-fontan done in the morning. I saw him this evening and he looks just fantastic so I have positive thoughts going about this for him. His carepage is linked to Lindsay's so that you all can get into "stalker" status for him. Go Zachy Go!!!!!!

A picture I thought was appropriate

Come on baby girl!

Lucky....

This is the word that comes to mind after all of the events that transpired today. Lucky. First, I would like to clarify what happened and tell you the results of the tests. There is a reason that my husband was with me today. In time of great urgency along with the emotions that go along with, we heard two different things and we were able to clarify once the dust settled a bit. What I am referring to is her heart. It DID stop this morning. However, this was not the issue, it was because of other issues that this happened. The issue was that she aspirated severely. This then lead to her not getting enough oxygen to her brain so she started seizing. Because of the lack of oxygen to her brain, this means that it is also not getting to her heart and that is why her heart stopped. We are thanking the Lord above that doctors and nurses were already at her bedside when this transpired and were able to start compressions immediately. Once they were able to move her to Pod A, they did get a heart beat but had to continue chest compressions because her blood pressure was not adequate and they still didn't have her lines in to medicate to control it. Chest x-ray from earlier was horrible. ECMO will give her a chance to rest for a couple of days and get rid of some of the fluid. One of the other major concerns is her kidneys. She is peeing like crazy so thanking God again that these seem to be functioning properly. Now to the brain. This is of course the biggest concern next to her heart, which is fine by the way!!!!!! Since she is on ECMO which is a lot of machinery to maneuver, they went ahead and just conducted a bedside ultrasound to see if they could see anything alarming. Drum roll please..........nothing alarming what so ever! AMEN!!!!! Now, this still doesn't mean that she doesn't have any problems, it just means that there isn't a reason to take her down to get the head CT right away. We will just have to reconsider if she shows signs of brain related problems. Lindsay does have much better color when we were able to see her again around 2pm. Her head, hands, and feet were definitely pinker. Still blue, but better. I will post a picture later this evening of the whole ECMO get up.
On a lighter note, we just want to say thank you to all that have sent prayers up for our daughter. The amount of people that have posted just brings us to tears. Off to see the princess. Love to you all!
Suzie

As the song goes...........

This photo was taken in the evening after putting her on ECMO. She is much pinker than from 8am. The lines from her neck are connected to her jugular and go to the ECMO machine.

Our poor baby.

Everything rides on HOPE now.
Almost (one day shy) one year ago today, Lindsay underwent her first open heart surgery. And one year later, we are back.......again. We got a call around 7am this morning that Lindsay was having trouble and to head over. So, we did and as we were approaching the hospital, the nurse called again to let us know that she was in Pod A (aka ICU). I asked what happened............they think she had a seizure and they are still doing chest compressions. WHAT?!!!! We just fell apart. Our whole world came crashing down in just seconds. Well, it gets worse. She is now on life support, or ECMO. X-rays indicate that she did aspirate as well. Later today they will take her down to do a head CT to see just what happened to her. I am not going to lie and say that she looks ok and everything is fine because it is not. She looks horrible. She is purple and cold. Doctors say that they were on top of the situation. She did actually code shortly after they arrived in Moderate Care. Her heart did stop briefly and she stopped breathing. They are doing an ECHO on her as I type this. So far they can see the her heart is compressed and function is down but that is to be expected when on ECMO. They will try and get an arterial line in a little while. This will be tricky because her access everywhere is just terrible. Oh, please lift her up in your prayers because she needs them terribly. Please pray that ECMO will give her the rest that she needs to heal and pray that her brain is still functioning as it should. Oh, God, we trust you and your decisions but we still can't help but question. Love to you all~
Suzie

Pictures from the big day!

Lindsay and Carlee got to celebrate their birthdays together!

Well, I think that face says it all. She had had it with the whole cake experience. Time for a nap!

Look people!!!!! I'm wearing purple!!!!! And it actually looks good on me now!

So silly!

She just loved playing in her cake. Of course I had tears in my eyes watching her dig in to it!

I had so much fun playing in my cake! I even tried some of it! Yummy!

AHHHHHH, a family photo. ;-)

Cake #2

Cakes #3 and 4 were for the staff to celebrate the big event. Thank you Sharon and Ashley for doing such a great job for us once again! We love you!

The big news of the the day is that she took a bottle!! We are starting very slow with 80 cc's every two hours to see how she does, but so far so good! Biopsy is scheduled for Tuesday, 3rd case so an estimated time of 1:30pm. But, we know how hospital time works.........

JR and I are now home for a couple of nights with the boys and preparing the house for the princess's arrival maybe next weekend or shortly after. Can you believe it?? I get butterflies in my stomach just typing it!

Happy Birthday Lindsay!

Our dearest Lindsay on your 1st birthday:

You are simply amazing. You have been through so many things that I don't even know where to begin. But, what I do know is that you are the absolute strongest little person that your daddy and I know and we couldn't be more proud of you. Just one week ago we got the best news that we could have ever hoped for for you........your "Gift of Life". Since then, you have been ready to get out of that hospital bed and start living your life as every one year old should. Our wish for you on your 1st birthday is that you can have a wonderful quality of life now with that brand new angel heart. We were very uncertain what the future held as we waited almost 6 1/2 months for the very best thing in your life to happen, but God knew and gave us the strength to stick it out and gave you the health to be able to accept this new heart. HE has big plans for you princess, and although we questioned that sometimes, we now know that that is true! Please know that there are thousands of people that pray, and will continue to pray, for you everyday. Your angel heart is very special and we pray that your body accepts it for a long time. The child that gave this special gift to you, and us, will continue living through you. So, be good to it. We love you precious babydoll and hope to have many, many, many more birthdays to celebrate.
WHOLE heart hugs and love,
Mommy and Daddy

No chest tubes out today

Lindsay had too much drainage from her chest tubes so they postponed, again, taking them out. Because they are still in, she is needing pain meds every now and then to try and keep her comfortable. Otherwise, she looks even better than yesterday.
Well, one year ago at this time, JR and I along with my mom and Dani, were awaiting the arrival of the princess. Can you believe it? One year ago! As of 7:47 am Lindsay is 1 year old. I can't even begin to tell you all of the emotions this week and I am sure, all day tomorrow that we will be experiencing. To be perfectly honest, I think we are still a little numb from last weeks events. I will share more with you tomorrow. We are exhausted and going to bed. Nighty night. ;-)
Love, Suzie

Tissues for this one.......I am warning you!!!!!

A very sweet heart mom, Stephanie Husted (Braeden's mommy), wrote this beautiful poem in remembrance of Ethan and his special bond with Tommy.......and Lindsay too for a short while. Remember that I warned you about the tissues........;-) (sorry the format didn't copy and paste correctly....)

There were two very special friends,Two hearts that life connected,They shared not only hopes and dreams,But a bond that most never suspected.You see these two brave little boys,Were friends right from the start,As both of them came into this world,Bearing a most special heart,They shared a bond quite unlike most,,They shared laughter galore,Syringe fights...and encouragement,But this story holds so much more...As both were born with broken hearts,That just didn't work as they should,They'd lived this way for all their lives,But had learned how to cherish the good,They brought the gift of precious hope,To many, I've no doubt,And their lives have reminded me,What friendship is about.But then the saddest thing occurred,As Ethan grew more tired,And many prayed he would get well,As his life had left them inspired.But heaven became Ethan's home,And God welcomed him with a smile,He told Ethan, how loved he was,Then He said, "You have faced quite a trial".And as the angels took his hand,To the place where all God's children play,Ethan turned to God and said,"Please don't forget Tommy, okay?"."He's waiting for a perfect heart,That only You can send,Will you make sure he gets it?He's been such a good friend.God took Ethan's hands in his,Compassion on His face,Your heart is whole now Ethan,You've shown amazing grace.Your footprints will remain on earth,With those you've had to part,Your presence will remain with them,Your friend will get his heart.Some things must come through hardship,Through patience, hope and strife,That's why it is miraculous,To get the gift of life."And Lindsay", Ethan whispered,She needs a new heart too,God just smiled and then He said,"I'll see what I can do".God sighed right then, I'm certain,Touched by this bond of love,I do believe he answered prayer,Sending Tommy new life from above.And Ethan played a special role,From behind heaven's scenes,And I remain reminded,Just what true friendship means.And miracles can still be found,Within Mott's prayer filled walls,The love of those within our hearts Still lingers, in these halls...

Some pictures to share

Tommy FINALLY got to see Lindsay. She was in the middle of her physical therapy session but we definitely took a break from it to capture this very special moment for us AND for Tommy. You could see the grin behind his mask. Too cute!

Tommy, proud momma Colleen, and nurse Margaret.

Happy Birthday nurse Lindsay!!!!!

It just keeps getting better!

Lindsay bracelets are famous in Paris!!! I want to share this photo that the sweet Allison shared while away on her study abroad last month. We missed you and welcome home!

The love that Lindsay's nurses have for her. Nurse Sarah got married on Saturday and wore her Lindsay bracelet on her ankle. I saw this and just cried. Megan and Sarah.......we love you soooo much!!!!

This was little miss before we left tonight. Does she look good or what?!!! That's our baby!

This is the sign that nurse Megan made for Lindsay's door. We have to be super careful now!

This was her arrival into Moderate Care today. Nurse Megan was waiting with open arms. Nurse Jen and tech Diane wheeled her there. What a great day!

On the schedule for tomorrow, removal of chest tubes and pacer wires. Maybe the IV in her hand as well. Keep praying!

Love to you all!

Suzie

THE PRINCESS.......

is on her way to Moderate Care today!! I will update again after the move but wanted to share the incredible news!
Love, Suzie

Living proof of the power of prayer..........

A little surprise for Lindsay from desk clerk Leslie.

And so was this!

I will just tell you that she looks fabulous! She is still a little out of it because of still being on a little morphine but hopefully tomorrow that will be removed after the other two chest tubes come out. Also, think her arterial line will be removed as well. JR was holding her tonight and from a laying down position, she sat right up! We couldn't believe it. It only lasted a few seconds and then she folded right back into Daddy's arms. She is all over having her pacifier in her mouth and we even got a few waves from her today too. Oh, and Daddy got a little smile.;-) So sweet. So, another exciting day tomorrow and then maybe back to moderate care or the floor by Wednesday or Thursday! Can you believe that???

A very special HAPPY BIRTHDAY to Lindsay's heart sister, Carlee, and to a very special heart mom friend of mine, Rebecca Butcher.

Heart Blessings~

Suzie

Update for Monday

Hello all...Linda here....
Just talked with Suzie as I know that many of you are on the edges of your seats for an update.
Lindsay is officially extubated! JR and Suzie came home to collect some things, do payroll, and are headed back to AA and will update later on today.
Hope this helps everyone go on with their day knowing that everything in AA is going very well.
Whole Heart Hugs,
Linda

9 hours until extubation??

Lindsay has been rockin and rollin with her sprints and the nitric is OFF!!! Pulmonary pressures are still a little higher but knowing that she can tolerate the sildenifil, those should go down without a problem. Two IV lines have been removed and tomorrow her cardiac lines will be removed before she is extubated. Extubation means that we are able to hold her tomorrow!!!!! We just can't begin to tell you how wonderful she looks. Please keep praying that things continue on the right track. Maybe by the end of this week, we will be on the floor! We do know though that we are here for at least another week and a half because we can't leave until she has her two week biopsy to make sure that she is not in rejection. So, also include in your prayers that she tolerates all of her anti-rejection meds and the test results come back negative! All for now. Tomorrow I hope to post a picture of the princess awake and without her breathing tube. Love to you all!
Suzie

2nd sprint......

PERFECT!!!! I just called to check in and today's plan is to totally wean the nitric, start the sildenifil, rest, and now start the ativan drip. She is one active cookie! The most exciting news is that they totally removed the milrinone! That's right folks. The medicine that has kept her in the hospital since September. IT IS GONE!!!!!! Extubation is now planned for tomorrow morning sometime. They just want to give her the best opportunity to get this done. So, resting it is and letting the sildenifil do its job. I will update again later today.
We are getting there!!!!
Love, Suzie

First sprint.....

and she did super!!! Her blood gas after her sprint off the vent looked perfect! Her next one will be at 3am for 1 hour. Cross your fingers that this one goes well too. Maybe later in the evening tomorrow (actually today) we can extubate! She is only on a morphine and milrinone drip and ativan every 4 hours. They were able to remove the epinephrine and dopamine drips earlier this evening. Well, all for now. Need to get some beauty sleep, Channel 3 news will be here at 12noon for an interview. Bags under my eyes wouldn't be too great. Love to you all!
Suzie

More weaning......

Tonight's goal is to start weaning her oxygen. She is currently set at 50% and doing awesome. Her gases say that her PO2 is actually 160, so it is time. She is definitely breathing over it! The nitric is weaned down to 5 tonight already and her pulmonary pressures have stayed the same but are still a little higher than what they would like. So, because of that, they said that they will start her on some feeds to prime her belly and that way when the nitric is shut off, they will probably start her on sildenifil (Viagra) to lower her pulmonary pressures. It was explained that the heart that she has now is used to a little lower pressures so they would like Lindsay's to be the same if possible. Her higher pressures were why she couldn't handle the Hemi-Fontan. But now that she has a nice WHOLE heart, this can be adjusted pretty easily. Stinker!!!
We will be going up again for a visit soon, but needed a nap to get rid of headaches before hand. Keep praying........especially since we now know for sure that they work!!!
Heart Blessings~
Suzie

PS Trying to figure out how to jazz up those restraints! ha ha Seriously people, she has been flopping like a fish on that bed. And that is why they made more drugs.......nighty night.

Late night visit

As I mentioned before, I couldn't sleep last night, so at midnight, I went over to see Lindsay. I just can't begin to tell you how great she looks! When I was there, they had weaned the vent down to the rate of 22 and she is on 50% oxygen. I called this morning and during rounds, the consensus was that they were going to leave her there for most of the day to make sure that her pressures are doing fine and worry about the major "weening" tomorrow. Fine with me!! However, the princess is officially restrained! Yes, folks, she is trying to roll right out of her bed! So, they now have hand restraints attached so the nurses can feel a little more comfortable with leaving the bedside at least for a second without having to worry that, sedated and all, Lindsay won't either fall off the bed or pull out her breathing tube!!! YIKES!
I just wanted to thank everyone for their very special comments that you have been leaving for us. I have noticed a small trend lately that is just starting to actually sink into my head that it is soon a reality.................getting out of here and taking her home!!! WOW! By the end of the month, WE ARE GOING HOME!!!!!! sniff sniff
Heart Blessings!
Suzie

Called on the princess

I couldn't sleep more after getting a two hour nap, so I called to check in on Lindsay. Nurse Tammi said that she is doing just great! She is still getting blood products to try and boost her crit levels. (currently at 32 and they would like them around 40 at the least) Otherwise, at 11pm, they will be adjusting the vent once more and we are slowly weaning her. Apparently the princess has other ideas because she really seems to want to walk right out of there. Tammi said that she woke up again and showed her her new trick from the last few weeks......shaking her head "no". You just have to laugh because even though you can't see it on her face yet, I just know that she is smiling when she is doing it. Little stinker! Needless to say, she got more drugs!! We are so thankful that she is feisty!!! Oh, and almost forgot, the drainage from her chest tubes has decreased from almost 30cc's per/hour per tube (and she has three of them) down to only about 10 cc's per hour per tube! Good girl Lindsay! Ok, back to trying to fall asleep for the night.
Love to you all!
Suzie

Birthday Party is officially cancelled for Sunday....

for obvious reasons!!!! Not only because of her transplant (yippee!!!) but because starting now and for 3 months from now, she is basically being secluded from as much contact with others as possible. We have to keep her healthy and apparently the 3 months is the time frame to do so. We will just have a small (party of 3) birthday party for Lindsay. Please remember to send me those emails (utsuzie@jasnetworks.net) if you made a donation of any kind in honor of Lindsay for her 1 st birthday. I have asked to do so so that I can put those emails in her scrapbook and read to her later what she had inspired people to do to "give back". THANK YOU!!!!
Heart Blessings~
Suzie

One hiccup but we are back on track!

I received a call from the ICU around 12noon and they said that they were having a problem with Lindsay's blood pressure being too low. A decision was made to do an echo and they found a lot of dark area around her right atrium. Either one huge blood clot or a lot of smaller ones. So, Dr. Ohye came in and opened her back up bedside and removed MANY clots and also stitched a few things that may have been nicked during surgery that were still bleeding. So, when that was finished, Lindsay's pressure is right where it needs to be. Whew! We just got back again from seeing her and you thought she was a little feisty before, well, you should see her now! She is trying to wake up!! They also lowered the vent settings some more so maybe extubation tomorrow???? Let's not jump the gun with her and let her rest tonight has been the decision and we all agree!!! She is now getting, in addition to all of the other drips, an ativan drip because she keeps trying to escape and go play!!! Oh, she looks soooooo good!!!!!!!

I really need to take some time right now to extend our deepest sympathies along with great gratitude to our donor family. My emotions just take over me as I write how eternally grateful we are for them being so selfless in their decision to donate life and making it possible for us to have our princess. Please know that your baby will forever live on in Lindsay. We will love you forever!!!!!!!!

I will update again soon. (maybe not again tonight though unless something changes with her status)
Heart Blessings~
Suzie

Pretty in......PINK!!!!!

Normal numbers!

What a trooper! All of her drips are on very minimal settings and the vent setting is already down to 60 from 100.

The nurses (and doctors!) just LOVE her!!!!

PINK! PINK! PINK!

MORE PINK. What better color for a princess!

Needless to say she looks incredible! We are back at the RMH and going to bed. Nighty Night!

Love, Suzie

The best update ever!!!!

She is closed and they are bringing her up to the ICU RIGHT NOW!!!!!!! Her oxygen level is 99%!!!!!!! I just can't explain the emotions right now. Dr. Ohye was very happy with everything and said that she looks great! I will update more after we see her. THANK YOU for all of the prayers throughout this VERY long night! GOD is good.....and so are all of you!

Update #3

Bleeding has been controlled, she is getting blood right now to replace what she lost, AND she is OFF BYPASS!!!! This is one rockin princess!!!!!!!!!

Update #2

Heart is in and BEATING!!!!!!! Everything is going well and they are now working on controlling the bleeding. If you remember back to her Norwood, she needed a little extra time then to get that under control. The princess just needs extra time people!!! Come on baby girl. You can do it!!!!!! We love you!!!!!!!!

Update #1

Heart arrived at 3am and they are currently sewing the new one in. Pray that it beats!!!!!!! Go Lindsay Go!!!!!!

Still waiting for an update...no news yet.

Handing her over......

Well, I could tell you a nice little story about how she was still smiling and happy while we were escorted down to the OR, which she was, but I am just going to totally honest with all of you..........That sucked BIG TIME!!!! At around 1am, we handed our baby over to the anesthesiologists to take her to get her new heart. We love you princess and just know that you are going to do great! I will update again in an hour or so.
We love you~
Mommy and Daddy

Everything rides on hope now...

They just brought her back to surgery about 10 minutes ago. Dr. Ohye, may God give you a sharp mind and steady hands with our girl! Please Lord be with all who are with her right now. Please be with JR and Suzie as they wait, give them patience and peace that your will will be done. Amen
whole heart hugs, steph

Still in Mom and Dad's arms...

Linda just called me and said they still have not taken Lindsay down for surgery, so she is still in her Mom and Dad's arms right now... They haven't heard if there is a delay or what, so they are a little anxious (little HA!), but they are just staying with her and I will let you know as soon as they take her down. Keep praying that everything is going good with the donors organs.
Thank you Lord for this family and the gift they are giving to more than just the Dean family. Amen!

It's me.....finally.

A photo for Rebecca Butcher!

And, as promised, for Danielle Holtzman! "The" bow! This is the first time that she has ever had it on because we were saving it for this special day!

Yes, I was holding the princess and smiling!!! Well, needless to say, I am still shaking,crying,and smiling all at the same time.......and a killer headache to boot. But........who cares about a headache!!!!!!!!!! LINDSAY IS GETTING HER HEART!!!!!!!!!!!!!!!!

It has just been crazy the last few hours and when I say that, I mean a GREAT crazy! JR got the phone call today from Dr. G and then of course called me afterwards. I was at work getting my toes done!!! I cried like a baby and started making phone calls to try and quickly make plans. I had only been in town about 45 minutes! A little while later, I spoke with Dr. G and he is the match is just perfect! That's right, he said perfect!!!!!!!! There should be no concerns about antibodies at all!!! (I'm knocking on wood as I type that!) GOD IS SO GOOD!! Ethan, you are an incredible little boy and I just know you had a hand in this!!!!!!

Lindsay's surgeon, Dr. Devaney, is on vacation so Dr. Ohye will be doing the transplant. He does most of them here at U of M and he did Tommy's yesterday too! I will be posting as we get updates through the wee hours of the morning and looks like, if things go as planned, Lindsay will be up in the ICU around 7am. So, hold on to your seats. It's going to be a LONG night!!!!

Please pray for the the donor family tonight. They have given us the greatest gift ever!

PRAY PRAY PRAY

Love a very grateful mommy and daddy,

Suzie and JR

Surgery Time Update

God bless the donor family, they have decided to harvest all of the organs, so the surgery has been pushed back. They will be bringing Lindsay to surgery at 11pm. Suzie is holding the Princess and smiling! Keep praying for all to go well. Suzie will be updating more at some time soon, but my guess is, she is busy holding the Princess.
Love,
Steph (party at my house?? I'm sure I'll be up all night! HA!)

You thought you needed your tissues for the pictures... wait till you hear this!!!!

TODAY IS THE DAY!!!!!!! THANK YOU LORD!!!!
This is Stephanie posting for Suzie and I am shaking while I type, but Suzie just called me... and today is the day. They have a heart for Lindsay and the doctor said they don't think it could be more of a perfect match. Of course Suzie was in Kalamazoo when they called, so JR is on his way home from work and they are getting ready and then on their way back to A2 (police escort please!!).
Please pray today for the doctors and for Lindsay as she prepares for surgery, please pray for Suzie and JR as they wait patiently for the day to go as God has planned... here is the prayer that Bob and I pray every day before his surgeries, if you are speechless like I am right now, here's a prayer to say the rest of the day:
Dear Lord,
Please be with the Doctors today as they preform their surgery on Lindsay, Keep their minds sharp and their hands steady as they do your will. Please be with Lindsay and her family and reassure them that they are well taken care of and in good hands. Please be with the anesthesiologists and the OR staff... keep them ready to assist in whatever the Doctors might need. Please be with the nurses taking care of Lindsay before and after the surgery, may they be alert to any problems that might arise so that she may recover safely and swiftly and return home (to us!!) soon! Thank you Lord for this family and for all that you do for all of us. We ask these things in Jesus' name.
AMEN!

Get your tissues.......well, at least I needed some when I saw these!!

Patti, you have done it again girl. You are awesome and we will be forever grateful! This one took my breath away!

Our big girl standing up!

This is her "little stinker" face.

The true Lindsay smirk.

Our basket baby!

So, did get need a tissue??

Update on Tommy: I spoke with Colleen before I left tonight and she said that Tommy looks incredible! I couldn't have been happier to hear that news. Please pray that he continues this good streak and that he can be extubated in the next few days. As I said before, Go Tommy Go!!!!

Love, Suzie

Go Tommy Go!!!!!

Well, I slept in a little at the RMH today and then did some work and ran some errands for the birthday party coming up before I headed to the hospital to see the princess. While I was working, I thought in my mind when I heard the noise, man, the helicopter is landing awfully close today. And then I went about my business. Later after lunch time, I arrived here at the hospital. Lindsay was sleeping and Margarite wanted to take me around and show me how to get into the conference room on Saturday and Sunday to get prepared for the party. After that, I came back and fed Lindsay and we were just rocking in the chair spending quality time together. One of the other heart moms in the room said, "Suzie, have you talked to Colleen?" I said, "No. Why?" Jessica said, "Have you read his carepage?" (I have Tommy's carepage linked to the blog) (ME) "Not today, but I did last night, why?" Jessica, "He is getting his heart right now!!!" As you can imagine, I was completely overjoyed with the news and mad at the same time that the nurses let me go almost a whole hour without telling me!!!! (hee hee) Yeah, Yeah, HIPAA shmipa! So, needless to say, I burped my baby, laid her down to play, and went right over to the ICU waiting room to hug Colleen and her husband. She proceeded to tell me about "the call" at 1:30 his morning and that they had to be here at the hospital at 8:30 or so this morning. The other story that she shared with me was that Tommy wanted to see Lindsay in the worst way before surgery. The first attempt, Lindsay was sleeping. Then before Tom was supposed to go back to the operating room to get his new heart, Lindsay was awake but Tommy needed to go then and there to the operating room. This little boy just amazes me. He wanted to see Lindsay before his surgery. (You can see at picture of Tommy and Lindsay under my posting for May 12th)Talk about pulling at the heart strings!!!!! He was reassured that he could see her after his surgery was over. I can't wait for that. As of right now, the new heart is in, beating fine, and they are working on getting him off of bypass. Please pray for the Shomaker's and pray that Tommy gets off bypass fine and just sails through and recovers swiftly! We love you Tommy! Go Tommy Go! I think a special angel had a hand in this..........We miss you Ethan!
Heart Blessings on this very exciting day!
Love, Suzie

PS Don't things like this happen in three's???? Sofi....Tommy...........Lindsay??? Let's hope so!

Teaser picture from Patti.........

Well, the picture describes it all! We had a wonderful day and we obviously were able to take her outside for her photo shoot today. She was in such a great mood and we even got to remove a few things.......anyone notice??
Thank you so much,Patti, for capturing these precious moments for us once again. Check back tomorrow for more photos from Lindsay's day.
Heart Blessings~
Suzie

My Sweet Kids........Together!

Just love this one of her!

Having fun with mom. Thanks for the great picture grandma!

Look at how happy she is with them. My eyes swell up with tears to see them all together.

So sweet.

Tomorrow, Patti is coming to Ann Arbor to take Lindsay's 1 year photos. Yes, can you believe it?! 1 year old! Please pray for good weather so that we can get outside to take some photos. I will update more very soon but wanted to let you know that Lindsay looks just perfect and has been a happy little camper. Talk soon!

Suzie

CONGRATULATIONS TO THE WINNERS
and a THANK YOU to all that participated! A special thanks to the Otsego Elks for allowing us to conduct this raffle.

Winner of 2 U of M Football Tickets: Lashea Quesenberry of Pace, Fl

Winner of 2 Cubs Baseball Tickets: Deb Boverhof of Dorr, MI

Grand Prize of a Cruise For Two on Royal Caribbean's Freedom of the Seas:
Kim Campbell of Galesburg, MI

Nice story on Kim Campbell, the winner of the cruise. Her husband is scheduled to be deployed to Afganistan in January and they were hoping to take a trip prior to his departure. We made her dream come true.

We still have space available on this cruise on the Freedom of the Seas departing Dec. 13, 2009 with rates beginning at $761.55 per person for an inside cabin including all taxes and fees. All proceeds will go to the Lindsay Dean Heart Fund. Please contact Linda at ultratravel@jasnetworks.net or Suzie at utsuzie@jasnetworks.net.