Arrangements for our Angel Princess

Lindsay Dean

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DEAN, Lindsay Raye
Of Parchment

Lindsay was born June 11, 2008 at CS Mott Children's Hospital at the University
of Michigan with a congenital heart defect known as Hypoplastic Left Heart Syndrome. Because her heart was too weak for complete surgical repair, Lindsay was placed on the heart transplant list in November 2008. After a long fighting wait,
her angel heart finally arrived just in time to her in June 2009. Lindsay was finally able to make her way home in
July of 2009 to begin her
new life with her family. 3 year old Lindsay Raye Dean, daughter of Everett (JR) and Suzanne (Lumbard) Dean of Parchment, received her angel wings Friday evening,
June 17, 2011 at Bronson Methodist Hospital after having a seizure which led to cardiac failure.

Lindsay is survived by her
two brothers, Cole and Cruz Dean; grandparents, Mary Dean (Parchment), William and Linda Smith, Donald
and Susan Lumbard (all of Kalamazoo); great grandparents, Clarence and Delores Lumbard (Plainwell); aunts and uncles, Daniel Lumbard (Pensacola, FL), Ken and Suzan Dean (Parchment), Doug and Deb Farrer (Kalamazoo), Robb and Carole Simpson (Wayland), Marva Simpson (Kalamazoo), Daniel Simpson (Clarendon Hills, IL), Jeff
and Carol Simpson (Lebanon, NJ), Jeannie Schoonbeck (Portage), John and Pam Lindsay (Muscatine, IA), Rick and Debra Lindsay (San Diego, CA), Wade and Retta Town (Kalamazoo), and Ed and Cindy Dean (Scotts); cousins, Braeden and Camden Lumbard (Pensacola, FL), Zachary Dean (Parchment) and Samantha Dean (Kalamazoo).

Preceded in death by her grandfather, Everett Dean, Sr.; great grandparents, Carrol and Margaret Lindsay, George and Ruth Dean, and Albert and Beatrice Schoonbeck; and uncle, Charles Simpson.

In lieu of flowers, memorials can be made to the Lindsay Dean Heart Fund at any First Community Federal Credit Union or by paypal on Lindsay's blog at www.lindsays
heart.blogspot.com to help with funeral expenses and
her pay it forward ministry
to other heart babies at CS Mott Children's Hospital, Love From Lindsay Baskets (www.
lovefromlindsaybaskets.blogspot.com). A Celebration of Life Service, given by Pastor Pam Vanderberg, will be held on Friday, June 24, 2011 at 11:00 AM in the Valley Family Community Center, 995 Romence Rd. in Portage. The family will receive friends at the Langeland Family Funeral Home, Westside Chapel, 3926 S. 9th St. on Thursday, June 23rd from 5-8 PM. Please visit www.langelands.com for online obituary, directions, register book and condolences. (269) 343-1508

Heaven just got sweeter............

With the heaviest of hearts, we are saddened to say that Our Gift from God has passed suddenly and now in the safe arms of Jesus. Friday June, 17th will now be Lindsay's Jesus Day. Funeral arrangements will be announced very soon.
Please pray for strength for our family during this time.
Heart blessings always~
Suzie

Summary of our week at hotel Mott.........

Starting where I left off..........so......after her ordeal on Monday from getting her line placed, Tuesday was spent just recovering. It was a mellow day of checking her levels, keeping her comfortable, and lots of rest. Thank goodness for an uneventful day! On Wednesday morning I was awaken by a phone call from one of the fellows working in the unit that week. She said the Dr. G wanted to take her down to the cath lab asap. What!? (good thing I had been sleeping in the ICU waiting room!) Apparently he had heard a gallop ( third heart beat) on Tuesday but just attributed it to the craziness from Monday. However, it was worse on Wednesday when he listened to her. His thoughts were that the extra beat was due to rejection. Checking pressures and getting biopsies was the only way to confirm it. So, off to the cath lab she went. Was a little nervous since we knew what had happened on Monday but then again, she was hydrated and starting to feel better. In fear of rejection, Dr. G started her on a whopper of a dose of steroids just in case the biopsies told us bad news. Biopsies came back later in the day, not rejection! great! But now what!? Not to mention that the pressures on the left side of her heart were now 20. They should be 10! Great! I am thinking at this point, " we came in here for diarrhea problems and now we have heart problems!" ugh! In the meantime, we are still meeting with GI and everything sample that has been sent in still keeps coming back negative. Because of all the stuff going on with sedation, etc., she hasn't been eating hense the diarrhea has gone away and tummy looks better. This is also what the GI people kept saying as they would examine here in the ICU. Well, duh! It's going to look better and decrease when your not eating........I was really about to smack the next person who came to me with that as sounding like it was great news! Grrrrr.........at this point, it was going to be extremely difficult to figure out what was going on. We are pretty confident that the flagyl is working! Keep your fingers crossed! Moving on.........Wednesday I headed home to be with the boys and for a photo shoot that I had scheduled a while ago. I also had to be home for my best friends wedding on Saturday. On Thursday after work, JR headed over to A2 to be with the princess for the weekend. While I was away, She developed elevated sugar levels. This was because of that whopper dose of steroids. If it's not one thing, it's another! :) while still monitoring that, she was still on tpn and lipids to control her nutrition. It was decided to give her a low sugar/low lactose diet to take it easy on her colon when she starts to eat. So far so good and it was an uneventful weekend for daddy! I headed back over on Sunday afternoon so that JR could go back home to work. Sunday was our 12th wedding anniversary. Saw my groom for about 1 hour. Romantic huh? Lol oh well. There will be more!
Now we are to Monday.(yesterday) Tpn and lipids were taken off because she was eating fairly well and almost back to her baseline in here weight!!! Yay!! Getting used to this whole low sugar/low lactose thing, but we are getting it. Uneventful.....so I thought. Lindsay now has an elevated heart rate and we can't figure out why. We upped her atenolol but it hasn't seemed to be making any difference as of yet. Not sure if they will really do anything about it but we I'll figure that out in rounds tomorrow (Wednesday). Today, she still has the higher heart rate and now we are battling with nutritionists on how many calories she should be getting. They say a minimum of 1480 per day. What?!! I don't even think that I eat that much! I know it's possible but......I'm an adult!! Not only that, but our problem is no longer her weight! She is back at her baseline and keeps gaining .1 kilos everyday! She can't keep doing that. I don't want to end up with an obese child! Ugh! Ever get the feeling that you think you are being listened to but you're not? Lol well, long story short, I think I'm winning that battle. Cardiologists are really not worried about it, so I won't be. :) the question now is the heart rate. Lindsay had some funky electrical things happen on her monitor the other day that Dr. G wants Dr. Bradley to look at since he is the expert in that field to see if he thinks we have an issue. Didn't hear anything today so I am assuming that they will have an answer tomorrow by the time they round on her. If it is a problem, there is a med that will correct the electrical problem and lower her heart rate. Ok, great. Let's get on with it then! :) antsy you ask? Pretty much! You see, Cruz graduated preschool on Thursday and this mom will not be missing it!! Thanks to the fabulous Devon, mommy doesn't have to worry! She will be staying with Lindsay tomorrow night and Thursday morning so that I can go. Love you girl! Who better to stay with her than a physician from U of M!! :) She knows people......lol
Tonight I had a visit from GI. Once every couple of weeks, they meet with the pathologist (which is one of the very best in the country......so they tell me) and discuss as a group all of the latest scopes and biopsies over that time period. Of course our princess was one of the topics of discussion. He discussed in detail the areas of concern. She did have some areas in her small bowel that indicated that she does in fact have celiac disease. However, her blood tests indicate otherwise. Hmmmmm well, because those two findings are different, we can try a few things to see if they work. Once Lindsay has completed her cycle of flagyl, and the diarrhea stays away, then she should be fine eating whatever she wants. If the diarrhea returns after the flagyl is completed, then we take in a sample to make sure that she doesn't have anything else first. If that comes back negative, then we are to start a gluten free diet for at least two months to see if that works. We should really know if it does within two weeks. I asked that question about how soon will it work because if she is till having diarrhea , I don't want to end up in the same boat that we are in now. so, only time will tell on that one. She will take her final dose of flgyl on Friday.
Hopefully this got you caught up. Crappy to not really have a definite diagnosis but at least she is better and the end is near! I can feel it! :) the only obstacle after we get the ok to go home is getting her line out. She will have to have it out in the cath lab and sometimes they have to coil it to prevent bleeding. Mainly because of where it is placed.....in her liver.
Please pray for a successful rounding tomorrow and that everyone has an answer to our problems! Lol I will update as soon as I know the plan! Lindsay prayer warriors rock!

Poop.......

Hi everyone! It's been a little bit but have been crazy busy trying to keep up with our little princess lately. She is still having belly issues which started back in December before our family left for Florida to celebrate Christmas. Anyway, this passed week and a half has been eventful. Lindsay was admitted a week and a half ago to get some tests rolling on her belly. The first order of business was to get a PET scan to see if there were any areas that lit up that basically indicated that she had PTLD (post transplant lymphoproliferative disorder). PTLD is a type of cancer that is sometimes found in people fter transplant. Finally on Friday afternoon, they were able to get her in. So incredibly happy to say that that test was negative for PTLD! Yes! However, this means that we don't have an answer yet. Next step is to do an endoscopy and colonoscopy. Biopsies were taken and all looked normal to the naked eye. Now, we wait.............
Lindsay was discharged on Tuesday and was so happy to finally get to eat and drink after having to be on a strict diet to clean out her system and then npo the morning and part of the afternoon of the procedure. things were back to normal on Wednesday and then on Thursday, her diarrhea was worse than ever! I contacted Meg and decided to watch her overnight and decide in the morning on what to do. I called her first thing to let her know that I didn't feel good about how she was doing and then made an appointment with the pediatrician to get a second pair of eyes. Pediatrician sent her for the predictable blood work and sure enough, she was slightly dehydrated. Off to Ann Arbor we go! Ugh! And on a Friday! Double ugh!
So, I finished what errands we needed to run and headed east. Went through the ER and finally was in a room by 11pm. Of course the nurses knew we were on our way and had a private room hook up all set for us :) Lindsay received some fluids in the ER and more overnight to try and solve our problem. On Saturday, she was doing pretty well with her drinking and just ok with her eating. She slept a lot on Saturday but we were thinking that she had also caught some type of virus and was just trying to recover. Who doesn't sleep when they are sick? Well........then comes Sunday. Besides the joy of having my threes boys come visit me on Mother's Day, the day was pretty grim. Lindsay was even more lathqrgic and had absolutely no energy what so ever! She didn't even have enough strength to hold her head up let alone sit up on her own! We lasted until about 2pm or so and I had had enough. She was now throwing up along with the diarrhea and dwindling away before our eyes. I got the attention of a resident that was on the floor and told her that I was done! She was no longer floor status material and she needed more attention! All of the color was disappearing from her face and her belly just kept getting more distended. They called for the ICU fellow to come over and look and she certainly didn't waste any time what so ever moving her to the Pod! Now we're talking! As Kyle so eloquently put it, mama bear roared! Lol when we got her over to the unit, we quickly inserted a ng tube and suctioned out her stomach to try and release the air and whatever else that was causing the distention. So far so good and her stomach went from 61 centimeters down to 54 or so. Progress. In order to get her the fluids that she needed, they really needed to get more access so they started another IV in her foot. That was fun. Not! Her access is horrible and then add being dehydrwted on top of it doesn't help. Lindsay then received boluses of albumin. Took some blood gases to find out that her levels were all out of wack. Her electrolytes were horrible and she was definitely in trouble! Of course, her potassium was one of those items that was low along with others. Her white blood count was fine. Her crit was low so she received some blood and her bi carb of course was low as well. After all of that, she was I,proving but she was still 1.5 liters down in fluid. Not good. So, the decision was made today that she really needed a PICC line placed in order to get the volume that she really needed to get better. While waiting for the go ahead to head to the cath lab for the line, a bunch of stool samples were sent down to the lab along with continuous monitoring of her stats. Again she was npo and ticked to say the least that she couldn't eat or drink before the procedure. Ugh! GI also cam by to discuss our next steps......I think. Mainly came to tell me that everything that they tested so far and biopsies has come back negative. They are treating her for Small Intestinal Bacterial Overgrowth and put her on flagil for that. Not knowing that that is the problem, being on the antibiotic is not going to hurt her but will kill any of the bacteria that they think is growing in her small intestine. W shall see whwt the outcome of that one is! Grrrrrrrr. We she is ready to eat, we are going to start her on a sugar free diet to keep things easy on the colon and go from there. Hoping to have a brainstorming meeting soon to discuss the plan of attack because we still didn't get one. Contemplating a second opinion!!!
The day just got harder after Lindsay line was placed. She had to get a transsapatic PICC line becau her other areas are just not feasable. After that was done and because she was so incredibly dehydrated, she started having trouble. Her cardiac output was starting to decline and all hell broke loose. She needed some epi and dopamine along with more boluses of albumin and whatever else to make her come back! Ugh! She didn't code, but was certainly close to it. Again, we have some wonderful people that care for the princess and we are grateful for them yet once again. Dr. G was there very step of the way and fighting along with us for belly problem solving. I don't think we are leaving the pod until we have it figured out.;) oh Lindsay....how you like to give mommy and daddy heart attacks! Sleep well princess! praying for forward progress tomorrow. Prayer warriors are appreciated!

Pray for Harrison!!!

Harrison is currently at U of M on ECMO and waiting for his angel heart. He has been on ECMO for about 27 days now. He needs a miracle and needs the Lindsay Prayer Warriors in full force! To read his story, click on his name at the side of the page. Thank you!

Fashion show on hold........

Had a fight with the wall, and the wall won! Poor thing tripped and hit the corner of the wall right with her noggin! My poor husband was right there but couldn't catch her fast enough. It was like it happened in slow motion but neither one of us could get there in time to prevent the inevitable. Ugh! She was a champ letting me hold an ice pack on it last night. We kept her awake in fear that she had a concussion. I gave her some Tylenol because I KNOW that she had to have had a headache after this! Good news is that the swelling is gone but the ugliness of it will last a little while. Oh man, and is it ugly! Poor baby!!!!!!! ;( Keeping an eye on the bruising. Post transplant kids sometimes have trouble with bruising. I will call if it doesn't go away ;)

Fashion show!

While I was in SC, of course I didn't come home empty handed! This is the fashion show request from Rebecca with more to come!

An update on the princess! She has been doing great! Her appetite is fantastic and meds are starting to level out. We had to decrease her tacro dose once again as her level was 17 last week. Now she is all the way down to 0.5 ml's twice per day! That is hardly anything! Simply amazing that all of a sudden her body is saying that she doesn't really need the drug! She was blessed with a perfect match and we just know her donor angel is always watching over her. We are going to get another level tomorrow and will know Monday if we need to make yet another adjustment.

She has an appointment next week with a fantastic GI here in Kalamazoo. Anxious to run things by them and see if we have nailed down her belly problem. We have taken her completely off of dairy (minus cheese on the pizza, etc.) and her belly and stools have been soooo much better! Praying that it is something as simple as an allergy all of a sudden. We shall see what he says and move forward. Trial and error, I think we have the basis down.

Again, more to come with the fashion show. Stay tuned! I had so much fun shopping for her! Especially with all the smocking that is available in the south! YES!!!!!!

Yes.....we are home! (last week...)

Delayed post but yes, we are home! We FINALLY were discharged on Wednesday afternoon! Final diagnosis was tacro toxicity. YIKES! We certainly do not want that to happen again! Not good. God has sure allowed Lindsay to jump her hurdles and for that, we are thankful.

I had Lindsay Baskets ready to go before we needed to head to the hospital but didn't have time to load them up. So, when JR came back to the hospital to pick up Lindsay and myself, he was great enough to bring the baskets! So, I was able to finish assembling them right in her hospital room and then wheel them down to POD A for the nurses to deliver. Delivering them to the unit never gets old. While our stay at Mott, we heard at least four heart warming stories about the baskets and the families and it warms my heart that they are loved so much! Those stories just give more even more motivation to keep on giving back!

As you can see, Lindsay got a little visitor while we were there. Ahhhhh, Tommy and Lindsay Schomaker..........we may just see that on paper someday ;-) He says that we will! lol Thank you for the visit Colleen and Tom!
Here is Lindsay playing "doctor". She is getting pretty good at listening. Maybe someday she will!

Oh.....thank goodness for the Christmas gift! ;-) What could be better passing the time at the hospital? Comfy pillow, watching Ni Hao Ki Lan, and eating cheese popcorn!

I had a lot of anxiety while hospitalized. Shocker, I know! Not only did we stay longer than expected, but we got discharged the afternoon before I was to get on a plane from Detroit to South Carolina!

I was so afraid that they weren't going to let us go on Wednesday. Thank goodness that it worked out because spending time with these lovely ladies was incredible and just what this momma needed! Time away in Charleston is always fun and we sure did make the most of it! We laughed, cried, ate....allot!, and certainly relaxed. We all deserved it and I'm thankful that everything worked out

as we planned. Thank you soooo much to Rebecca and Danielle!

Enjoy some of the photos that I captured while sightseeing in one of my very favorite cities!

Long Days

Lindsay has been doing fantastic! She looks so much better and is back to her normal self. Thank you once again to the good Lord above! Yes friends, you guessed it. We are still in the hospital! Ugh! Why, you say? Good question but in typical Lindsay fashion, she shows the doctors things on her own time. We were told that maybe on Sunday we would get discharged. Well, over the weekend, Lindsay developed high blood pressure all of a sudden. Ugh! We have gone up on her Enalapril and have been monitoring it ever since. These last few days have been VERY boring waiting for the medicine to work to the doctors liking and waiting to see if her blood pressure has stabilized to what they want her to be. She has had a very successful day today with regards to that and depending on her tacro level and blood pressure reading in the morning, we should be able to go home! Jr is bringing the boys over tomorrow to pick us up so crossing my fingers that they can make the road trip! Jr went home today to be with the boys since we had to break our promise of coming home last night. We didn't want to break another one today. So, he was there to get Cole off the bus and when my Dad brought Cruz home. You talk about two happy little boys! I can't wait to see them!
Over the weekend the doctors also requested to send stool samples and urine cultures down to the lab in hopes to figure out what is going on with her belly. They had found some yeast in her stool so they are further investigating her urine to see if there is something in there that should be treated. If so, then she would just get an antibiotic and things should get better. If not, then GI will be in our very near future because even though we have the other things figured out, her belly is still distended and lots of stool still being held in there for some reason. Maybe just a Myralax fix we hope, but you know the princess, it won't be that easy.:-)
Hugs and love to you all. The prayers keep coming and are always appreciated more than you know!
Heart Blessings~
Suzie

In the right direction......

The last few days have been very productive and she is looking really, really great! Most all of swelling is gone and she has been eating! That is so exciting for us because Lindsay hasn't eaten very well the last almost three months. Just nibbling here and there. Yesterday she ate a whole piece of pizza along with Mac and cheese for lunch. Her snacks have been Doritos and cheerios. I think we have finally kicked the saltines kick that she was on. But, the poor girl didn't feel well and that is what tasted good to her. Can't blame her for that! Today she was surprised with a huge bowl of popcorn by one of the cna's. She was in her glory and Loise was thrilled that she loved her gift so much! Awesome! Lindsay had a bath today too. It had been almost a week. She probably feel like a whole new woman! Lol spaghettios and a little jello was on the menu for lunch today. Can you tell that I am thrilled that she is eating!?
On the medical side of things, she is still on her diuretics and today was her last day of her antibiotic for her pneumonia. She started myralax yesterday to try and release all the extra stool that is in her bowels. So far, nothing really exciting in her diapers that is out of the norm. I think tomorrow we might be taking a more aggressive approach. The fear in doing that is drying her out too much. We just have to be careful of dehydrating her again. She also has a lot of air in the bowel too. Not too clear how that is happening but hopefully once we get her emptied out a bit, that will help. We are getting there and we are very happy that she is here at U of M. They re so careful with her and they all know that she can be tipped in the wrong direction very easily so they are being cautious with be aggressive. Her tacro level this morning was down from 10 to 8 this morning. So, still very good in that department. Another blood draw in the morning to see if her dosage is what we need her on for when we leave. There is a very slim chance we could go home tomorrow, but only time will tell and what her reaction will be to another dose of myralax. Thank you again for your prayers. The Lindsay Dean prayer warriors are the best!
Heart Blessings ~
Suzie

We are on the FLOOR!!!

Things are really happening today! She was able to get her central line out of her groin, all IV's were pulled, and all meds are oral! Yes! Her swelling is much better due to her lasix and aldactone diuretics and she has eaten more today than she had in a total of three days at home! Ahhhhhhhh.........We are now on the floor and....wait for it.......not in a private room? "WHAT?" you say? No more precautions for her! She is so far post transplant and has no crazy flying bugs so we get a room ate. Different I will say but we got paired in a room with a beautiful family with a daughter, Addison who is Lindsay's same age, who is just cute as can be! We are so, so happy!
Now, tomorrow they will draw more labs to again check her taco level. It was already down to 23 today from 53 yesterday! Awesome! You can totally tell that she is coming back to her normal. Such a great sight my friends! I will address the plan to figure out her gut issues but I have a feeling that all of this was started by a virus ( when she got the flu before Christmas) which led to her not eating as well, which led to dehydration, which led to her body not taking it anymore, which led to her tacro going berserk because she was dehydrated. We were VERY lucky that we didn't encounter more severe results because of that critically high level! She really should have been seizing with that level! Yikes! And so not cool! But, yet gain, our princess rules the roost and likes us too much to leave us. God is not ready to take her away. She is teaching us just too much. I hate that she is my teacher, but that is what I believe she is here to do. I am a much better person because of her. Thanking God for her everyday and that HE chose us as her parents! Here's to a successful tomorrow so we can blow this Popsicle stand!

A day of unknowns......

Today started with taking Lindsay down to the cath lab to take a closer look at her heart, get a few biopsies, and try and get lines in for meds later if needed. Got an update from Meg about 2 hours later that they were able to get access through her groin for the biopsy (whew) and had gotten 8 tissue samples to check for rejection. The next update about 1/2 hour later was that they had to give Lindsay some Dopamine to help her blood pressure because it had really taken a dive during the procedure. Freaking out momentarily that we had a bigger problem on our hands, she then explained that they had to put her under general anesthesia, put her on the ventilator hence the reason for the lower pressure. She was reacting to the anesthetic and needed some assistance for the rest of the procedure. After all was done and getting a line for meds was unsuccessful ( not surprising. Her access really stinks!) , they brought her up vented but before we could even see her, the decision was to extubate her because she apparently was throwing a fit! Lol Wonder why? We finally got to see her and really, we thought she looked pretty good. We knew she was doing ok because she was asking for crackers and juice:-) Her eyes really lit up when she ate her cherry Popsicle! The rest of the afternoon was spent taking care of her and making sure she stayed comfortable. The hard part of that was watching phlebotomy try multiple times trying to get another IV. They were in her room for almost an hour and even with ultrasound, they couldn't get it accomplished. Ugh! Poor baby by then was ticked off! That is putting things mildly! A little versed and got a well deserved nap. Mommy and Daddy then got to leave to get some dinner.
The highlight of the day was Dr. G stopping us before we went to grab supper to tell us that her biopsies came back with absolutely NO REJECTION!!! Thank you to the great Lord above! So, what does this mean now you ask? Well, we also found out that her Tacro level was 53! Um, that's not good! Her level should be anywhere from 5-20 and Lindsay's is normally around 13. So, the plan is the wait it out a few days to allow for her tacro level to decrease and see what her heart looks like then. The elevated level could be the attributing factor to all of this trouble. That would be great if that fixes all of these unknowns with her heart. If she then decides to release all of this stored poop, then
we have our answer. If not, then we re-evaluate and get the GI consult that I wanted a long time ago! :-) So, the plan is really to wait it out
and see what she likes and dislikes. She will be getting her small doses of lasix still along with her meds but minus her tacro dose of course.
:-) We left her in the care of nurse Amy tonight sleeping. Let's hope she gets a good nights sleep tonight and makes big strides tomorrow
getting back to our normal princess.
Your love and support for our family is truly overwhelming once again. We love you all and read each and every one of your comments whether it is on the blog or facebook. It keeps us going and gives us hope when we feel down. I say today was a pretty good day with figuring out some of the scary unknowns! Thank you for helping us through it!

Lots of information and changes......

Well.......sigh. Lots going on today and yesterday since we brought the princess home from the hospital on Saturday. This was the consensus on Saturday when we left Bronson: echo looked good except for some mitral valve leakage (which we knew about), belly ultrasound showed a lot of air/gas and didn't look concerning, labs all looked better from previous day after a bolus and continuous maintenance fluid over night, and X-ray indicated pneumonia and was treated with IV antibiotics in the hospital and came home with script for it. I will say that Sunday morning, she ate breakfast extremely well which indicated to us that she was on the upward swing. Throughout the day, she did fairly well and then that evening, she was swollen bigger than ever. Ugh! Worried all evening on what we should do, we let her sleep and then in the morning, first thing, call Meg and the pediatrician. Called both and the decision was to head to U of M. Right decision! Since we arrived at the ER today, we have confirmed that she does have pneumonia and her lab work has improved. All same as Bronson's results. Good! But......after doing another ultrasound of her belly, we were told that her bowel was EXTREMELY loaded with poop! What!? What about the air diagnosis? Grrrrrrr. Wish that was it! On her echo, it concluded that her left atrium is smaller therm her right, of course the mitral valve leak, and her heart is very stiff when it's supposed to be relaxing after it contracts. Both of those things are sign of possible rejection. Sigh. So, being cautious, we are headed over to the ICU tonight for close monitoring as they do the following in preparation for a heart cath and biopsy first thing in the morning: give her an IV diuretic to try and release the fluid from her tissues to release the swelling, give her Albumin to help increase the protein levels in the blood stream so that when they give her more fluids to re-hydrate her, the fluid will hopefully stay in the vessels instead of the tissue. They will also give her a large dose of steroids in preparation for any treatment that needs to be done in case we are dealing with rejection. Now, if it is rejection, we were relieved to hear that this is treatable and she will be fine once the meds are figured out and dosed for her acceptance. Thank You, Lord! Please join us once again in prayer that her little body still likes the donor heart and that we can set our minds at ease of this worry. Amen!
Now, the other issue is with her poor little poop filled belly. Thinking that all of these issues are heart related, they aren't going to worry about
that at this time. One thing first and dealing with the most important one is the priority. After the results of the biopsy, we will be able to move forward with treatment but knowing if it is rejection or not will determine how they go about treating the other things.
Thank you again to all of you who have prayed for us and continue to lift our family. I will update again after the heart cath tomorrow morning.
Heart Blessings ~
Suzie

Home and semi-fixed

We stayed one night at the hospital (Friday night) and Little Miss got some IV fluids, antibiotic to treat what was thought to be slight pneumonia, and let's just say a not so restful night ;-) Having to take vitals at 1am, 3am, and 5am got the princess a little ticked to say the least. She would do fine except for that pesky temperature under the arm get up. lol The girl has been poked so many times but what really gets her is a nurse taking her temp under her arm. Go figure! lol Getting an IV was a challenge to say the least. She still hasn't outgrown her access problem. Took them three times in three different spots to finally get the line in with her constantly screaming bloody murder the whole time. I would say it was about 30 minutes straight. Yes, she napped a little but following that ordeal, we had to take her down for a belly ultrasound to see if there was anything alarming going on. Nothing but hoping that we get a GI consult when we go to U of M on Tuesday for transplant clinic. Lindsay also received an echo which looked just great. AMEN! Rejection is and will always be in the back of our minds and relieved that it wasn't the case THIS time. She received a bolas of fluid and then maintenance from then on. Poor little thing is now puffy all over. But, I will say, it has improved her eating. I just feel in my gut that there is an underlying issue going on hence the wanting of that GI consultation when we go. Lindsay is also getting her ear tubes put in on Wednesday. We got home by noon on Saturday and have been taking it easy getting her to eat, drink, and produce stool samples. Yes, I said it. We have to collect her stools for 24 hours of time. Ewwwww was my reaction. ;-) Oh well. Have to get it tested! So, please pray that our clinic visit for the princess is successful in figuring out her belly problem which is related to her eating and then getting dehydrated problem. It just has to be. Momma knows something ain't right! Here are a few pictures during our stay.

Heart Blessings~

Suzie**

Tough cookie to figure out!

This was Lindsay's foot as of yesterday. Wednesday night, it was even worse. Poor baby has kankles! She has sudden swelling in her legs, feet, and pelvic region. We are headed to the pediatrician this afternoon to try and rule out congestive heart failure. We say that because she has also been congested. Those two things mixed together is not good! Even though Meg, the transplant nurse practitioner at U of M, doesn't seem to think that it is that severe, we were all in agreement that we should go. The good news is that we are going to U of M on Tuesday anyway for her routine transplant clinic check up and on Wednesday she is getting her ear tubes put in. She is also still having her belly issues with diarrhea which also may be a factor since it has gone on since Christmas. Praying for the best and hopefully we will be put to ease later this afternoon. Maybe an echo is in our near future. Thank you again for your constant prayers and support for our family and the princess. We love you all! I will keep you posted!

Blessings~

Suzie

Update in Little Miss....

Due to multiple ear infections since last June, Lindsay's pediatrician has pulled the trigger and called U of M to have tubes put in her ears. This passed month has been awful and she has been on an antibiotic of some sort all month long! She goes through her ten day cycle on the med, off for a day or two, and then scream of pain in the middle of the night. Yep, infected again! Or it never went away! Poor thing! So, on March 8th we go to A2 for her next transplant clinic visit and pre-op for her surgery on the 9th. Yes, folks, she found something else that she hasn't experienced yet! By the time she's 20, she will have had every surgery known to man! lol

The dates actually worked pretty well. We will just stay the night on the 8th and won't have to worry about making the few trips back and forth. We also just found out that Lindsay's boyfriend ;-) , Tommy, has an appointment on the 8th as well and we will be able to have dinner and spend some time with them! So excited!

From a transplant stand point, she has been doing great! Anxious though to see what her echo and levels look like because she has been a bit "purple" in her lips and fingers. But, the good part is that it goes away every now and then so I'm not totally freaked out about it yet. She has been acting fine, minus the pain in her ears, and is speaking more and more words every day. She's growing up. Don't know how I feel about that yet ;-)

The above photos are of Lindsay eating her VERY nutritious breakfast. The stinker slipped a few treats in with her frosted flakes ;-) Hey, I think everyone is a sucker for Jelly Belly's! The other one is of Lindsay and Jen when we delivered those precious Valentine Baskets to the heart kiddos in POD A. They have a special bond that will never be broken. We love you, Jen!

Delivery for the heart....

in more ways than one! Valentine's Day has a whole new meaning now and here is why.........





My heart is full! Thank you to all that donated to this wonderful cause and a HUGE thank you to Hearts of Hope for making this possible as well. We are surrounded by so many wonderful people. We are blessed beyond belief!
Heart Blessings~
Suzie

Volkswagen Commercial: The Force

If you are football fans, then you certainly watched Sunday's Super Bowl! Little known fact that the commercials for the worldwide event are usually fantastic. Well, they certainly live up to expectations this year.......at least Volkswagen did! I'm sure you had to see it. Little Darth Vader trying to use his powers :-) Little did we know that the people at Volkswagen had the knowledge and awareness of what February was and hired a little boy with a CHD! To read his story, click here......http://www.wearechildrens.org/?p=1818.
Below is the commercial if you happened to miss it!

This week....

Today marks the beginning of Congenital Heart Defect Awareness week and we are celebrating by taking some incredible heart themed baskets to Mott tomorrow! It warms my heart so to be able to give this small gift to the parents of these special babies. I can't even begin to express what it means to me as we pass these out tomorrow. I don't know if it's just because of what week it is.......nope, it's because these kiddos are my heroes and I can only wish that I could be as strong as them. So, this post is short because I have allot of organizing and packing to do for tomorrow! Heart Hugs to all of you!

And of course, one more of the princess to tide you over ;-) She was trying to make a heart with her hands. Pretty good attempt, I think!

Tis' the time.......

to raise awareness about American Heart Month and now the famous CHD awareness week (February 7-14). I have begun my quest to collect items for my goal of 40 Love from Lindsay baskets to deliver to Mott on February 8th. I have received so many donations for the baskets. Both items and monetary. We could still use both to make this happen, so if you would like to contribute to this ministry, you can do so by using PayPal to the right of this post (to sponsor a basket is $15), or if you have items to add to the baskets such as Valentine themed receiving blankets, pacifiers, pacifier holders, infant boy hats, infant (boy and girl) socks, or 6-8 inch stuffed Valentine animal, you can email me at utsuzie@gmail.com and I will get you the address to send your donation to. This ministry has really made a difference in a parents day, or week, and I am very thankful to all of you that have contributed. My hope is to keep this going for a VERY long time!

Princess News: The month of January has really been low key for the most part and have just stayed out of the cold trying to prevent any illness! Besides a runny nose and slight cough every now and then, she has been healthy......until Sunday night that is. If I hadn't posted it, Lindsay had another ear infection in November that required two doses of antibiotic to get rid of it. Prior to that, since June (on her birthday of all days!), she has two other that have required double dose antibiotics and a few other that just required one. In our visit to the pediatrician on Monday, we have made the decision that we have been trying to avoid.....Lindsay is getting tubes! The next question was answered today on where she would get them done......Ann Arbor. I'm ok with that. We meet with an ENT on February 8th (good timing to deliver baskets, too!!!)to determine how soon we can get this taken care. Poor girl Sunday night was SCREAMING ALL NIGHT LONG!!!!!! Felt so sorry for her. Even Motrin and Tylenol didn't take the edge off.
Other than that excitement, we have been good and staying afloat. I CAN"T WAIT 'TIL SPRING!!!!!!!!!! Getting a blizzard tonight GRRRRR so sick and tired of snow! I am officially in the "winter blues". On the bright side, the sun did make an appearance the other day! Miracles DO happen!! lol At the top of the blog, I posted a new picture of the princess playing in the snow....well, standing, but her version of playing in it! ha ha I have also included a picture of a few of the items that will appear in the Love from Lindsay Baskets for "heart" day/week. I cannot wait to make this delivery and show all of the families how much we care for them! Until next time.......
Suzie

This little girl......

never ceases to amaze us! Went to U of M today for what we hoped to be her LAST neuro appointment and sure enough we were told, "No need to return. She looks great and we are going to see you on an "as needed" basis." Can I say WOOOHOOOO!!!! Our miracle princess rocks! Next road trip is in March for her regular clinic visit and we are anticipating the same results at that appointment!

In the meantime, I am working like crazy to achieve my goal of 40 baskets to U of M for "heart day" AKA Valentine's Day. If you are interesting in donating (you can use PayPal on this blog) or sending items (you can email me at utsuzie@gmail.com) , they are certainly welcome! If this goal is achieved, I think that will put our basket count well above the 170 mark! Awesome!

Enjoy some of photos that I took for our Christmas cards of Little Miss.

Heart Blessings!

Suzie

Photos from basket delivery and our beach Christmas!

Happy New Year, friends! We are so grateful for all of you!