Tuesday, June 30, 2009
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.
Monday, June 29, 2009
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!
Sunday, June 28, 2009
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......
Thursday, June 25, 2009
Here's to miracles today! Keep those prayers coming!
Wednesday, June 24, 2009
Tuesday, June 23, 2009
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
I will update when we here results of the MRI tomorrow. Praying..........
So for a fun filled Sunday afternoon, please contact Sue at: firstname.lastname@example.org, or Carole at email@example.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
Sunday, June 21, 2009
Love, Suzie and one proud papa on Father's Day!!!!
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!
Friday, June 19, 2009
Thursday, June 18, 2009
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!
PS Patti was also sneaky enough to use the song that I sing to Lindsay everyday, in the slide show......Love it!!!!! sniff sniff
Wednesday, June 17, 2009
Tuesday, June 16, 2009
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~
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!!!!!!
Monday, June 15, 2009
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!
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~
Friday, June 12, 2009
Thursday, June 11, 2009
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
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. ;-)
Wednesday, June 10, 2009
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...
Happy Birthday nurse Lindsay!!!!!
Tuesday, June 9, 2009
Monday, June 8, 2009
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,
Sunday, June 7, 2009
We are getting there!!!!
Saturday, June 6, 2009
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!!!
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.
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
Friday, June 5, 2009
Love to you all!
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)
We love you~
Mommy and Daddy
whole heart hugs, steph
Thank you Lord for this family and the gift they are giving to more than just the Dean family. Amen!
Thursday, June 4, 2009
Steph (party at my house?? I'm sure I'll be up all night! HA!)
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:
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.
Wednesday, June 3, 2009
Heart Blessings on this very exciting day!
PS Don't things like this happen in three's???? Sofi....Tommy...........Lindsay??? Let's hope so!
Tuesday, June 2, 2009
Thank you so much,Patti, for capturing these precious moments for us once again. Check back tomorrow for more photos from Lindsay's day.
Monday, June 1, 2009
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 firstname.lastname@example.org or Suzie at email@example.com.