Pretty in Pink..........celebrating for a special Angel

Happy Birthday sweet angel.........

Sporting my new Valentine attire. Got to love Old Navy!

The twinkle in her eyes just melts my heart.

Happy Birthday to my heart friends! Love you Owen and Annabelle!

Lindsay had an exciting day yesterday. We participated in the celebration of Angel Annabelle's 1st birthday. A cupcake with pink frosting and dolling up in pink was a must for the occasion. Mom even released pink balloons up to the heavens in the snowstorm as well! We thank God every day that we are a part of their lives and we thank Annabelle for sharing her story with all of us. We are blessed in so many ways. We also celebrated Owen's 1st birthday as well. Owen is a heart brother that is also waiting for a new heart. Please join us in following along in his progress. Things about Lindsay and Owen are very simular so it is interesting to follow along. Happy Birthday to our heart friends!
Lindsay has been doing fabulous this week as well as last week. She had her blood draw on Monday and her CD20 levels were not high enough to do another dose of Rituxin this week. Another blood draw will happen this Monday to determine if next week will be the time for the dose. I was really not surprised that she wasn't ready because if we look back, it took her 3 weeks last time before her levels were back up but unfortunatley last time, she got sick and started her potassium issues, so they decided they would hold off on the dose until she was better. It worked out anyway because she is having alot of company this weekend and she will be feeling well for it. If she were able to get the dose, she would probably not be feeling the greatest. So, praying that she is happy when her visitors arrive. Uncle Rick from CA is coming to town and also Aunt Pam and Uncle John will be here from IA. Not to mention that Daddy will be here tonight or tomorrow along with Cole & Cruz and Grandma & Bill arriving on Saturday. Kirk and Jody will be arriving Saturday afternoon and the rest will be here Saturday night. So, she is sleeping as I type this, so she is resting up for all of the excitement!
Things are the same as far as her care is concerned. Maybe in a month or so, doctors MIGHT consider doing a heart cath to see what her pressures are. If they are low enough, we might have a conversation about doing the hemi-fontan again. Last cath results showed that her pressures were aroung 16 or so. They really need to be in the single digits for the hemi, so we shall see when the time comes. For now, it is just in the back of our heads as a thought. Another would be to change the shunt size if she were to start to develope problems. We do consider ourselves lucky because not all children have possible other options other than a transplant. So, as much as we pray for that new angel heart, we also pray for these other options in case we don't get that heart. We are blessed that we have these options and we are blessed because we have all of you praying for our babydoll. Keep it up! God is listening!
Love, Suzie

So far it is working.....

Sporting my new curly bow and playing with my new elephants from Rebecca. I love you friend!

Elaine just couldn't get enough of me! Thanks for coming to play!

OK, I have seen this a million times......I will save Mom and Dad some money and just listen to myself!! ha ha

Aunt Carole and Uncle Robb came to visit me again last Sunday. I always like snuggling with my Aunt Carole!!

Well, I didn't post that I was coming home so that Lindsay didn't follow suite with acting up while I was away. So far so good and she is still in Moderate Care!! She is doing great and I am missing her so much. On the other hand, it is so nice to spend some time with the boys. I am heading back on Tuesday after my dentist appointment. I just wanted to make everyone aware that I linked Joshua's page to the blog. He is going off ECMO and is doing well as of last night. Please keep he and his family in your prayers. This has given us a renewed gift of hope that we really needed. It was starting to diminsh a little and this news certainly gained that back!
Love you all!
Suzie
PS Sorry I missed you Diana! I was bummed when Ruth said that you were there.......Hopefully you can come again so that we can visit and play with Lindsay!

Her fans have been asking......and here they are!

More pictures of the princess. Enjoy! I just love my new bouncy seat! I had a 3 1/2 hour nap in it yesterday!

Lindsay loves her rings. Even though she tries to eat them, they do provide good entertainment.

Well, I did start out lying in the center of the boppy pillow. I just really wanted to sleep on my tummy! So, over I went!

Thanks for my new toy Grandma "Fishy"! I love looking in the mirror and looking and waving at the pretty baby that stares back at me!

After my dose of Rituxin last week, I had to have a little oxygen to get my sats up a little. Over night I got better and was able to take off the cannula. I am sporting my new hair clippy from Danielle in Kansas. She is one of my prayer warriors and I just love my new things! Thank you!!!!

Lindsay has had another great day and is loved my all the doctors and nurses here. She definately gets alot of attention from them even if she isn't setting off the monitors! Thanks for praying for our little one and keep it up because He is listening and making it possible for us to enjoy a very happy baby!!

Love to you all!

Suzie

Great day full of hope!

Hello!! Lindsay had another great day yesterday and I couldn't be happier about it! She was very happy and playful and I enjoyed every minute. The best news of all yesterday was that of Angie Hand. Our heart friends from Alaska that came to visit us during their trip back to Michigan. She informed us of a little boy, Joshua, that just received a heart last night and he was at 95% for his antibody level! Holy Cow! They actually found a PERFECT match! We witnessed a miracle yesterday and I can't help but think that there is hope for anything to happen. However, realistically, we still have to focus on getting her antibodies down. Like I mentioned before, Lindsay will have a blood draw on Monday to see if she is ready for her next dose of rituxin. OK Andrea, here is our hope for our babies!!!! Please pray for Joshua's family (I will add the link as soon as I get it) and pray for the family that lost their child yesterday but hopefully can rejoice in the fact that they gave life back. Oh, how I feel for them. We love you all and please keep Lindsay in your prayers that this PERFECT heart comes for her. HE knows.........and it's killing me that HE won't share this information!!!! ha ha All in good time.....
Heart Blessing~
Suzie

As close to perfect as it gets..........

Lindsay had a wonderful day. I worked a little from the RMH this morning and then went to see the princess at around 12:30 and was greeted with a huge smile when I walked through the door. Trust me, I melted a little when she did that. She was finishing up her bottle and then stayed up a little after that to play with me. She almost has a little giggle now when she smiles so big. The rest of the afternoon we sat in the rocking chair and she had her head on my shoulder for a good 2 hours. Needless to say, I was in heaven!! She loves to lay on her belly so it is perfect for her to lay on my chest like that. She was awake when I left to come back here for dinner so I'm hoping she naps a little while I'm away so we can have some more play time when I return. Praying that the wireless connection will work soon because I have some really good pictures to post from today.
Next Monday will be her blood draw to see if she is ready for another dose of rituxin. Please pray that she keeps feeling well so that these doses can be done every two weeks as scheduled. The more we can do, the better the chances of finding that perfect heart match!!
Love to you all!
Love, Suzie

Doing OK

Well, the boys are here and it is fantastic to have them! I can't believe how fast a weekend can go because they all leave tomorrow! Sad day it will be but I will be home for a few days next weekend. Lindsay has been not so happy the last couple of days. Got a call yesterday and today that she just isn't herself. And we agree. Her color is not as good and she is just irritable sometimes. This is strange because Lindsay never is irritable. REALLY! We have gotten a few smiles out of her but not like normal. Doctors have been spying on her all day but nothing alarming in an xray nor has she spiked a fever. The only thing is that her oxygen sats are a little lower but the hope is that it is because she isn't feeling like herself. So, they put a nasal cannula on just to help her feel better and it is only set at 1/4 liter. We all just think that she might have some sort of bug and hoping that it will go away soon.
Today the boys were able to make dirt and worms at the Family Resourse Center. The Michigan Women's Soccer team was up there helping them make it out of chocolate pudding, crushed oreos, and gummy worms. Looked gross, but the kids sure liked it. I went to feed Lindsay and when the boys returned to her room about 45 minutes later, JR said that Cole and Cruz had about 8 of the girls playing board games with them. Trust me, Dad is very proud! ha ha
Anyway, please pray that Lindsay gets over feeling yucky and that she is back to herself in no time. Stay warm fellow Michiganders!
Love, Suzie

PS Not so nice rubbing in those higher temps! Yes, a little jealous! No, actually, ALOT jealous.

Things have been going just fine

The last two days, Lindsay has been doing just great. She has been very happy and smiling all the time. I just can't get enough of her!! Doctors adjusted her oral dose of K when she was moved back to moderate care and then today they brought it back down a bit to try and prevent too much of a drop after her diuretics. Last night she caused quite a stir because after her 6pm diuretics, her K dipped to 1.8! That is waaaaay too low! Now, before, she had a problem when she hit the 2.0 mark so needless to say, 2 attendings, one fellow from the PCTU, and a few residents just watched her for a minute to see if she would have the same drop in heart rate as before. Well, now they are stumped because she didn't even have a PVC! (irregular heart rythm) Meanwhile, nurse Mindy was hanging her IV dose of K and the next draw was just fine. So, pray this adjustment goes fine and that she doesn't go that low again! Man, we need a vacation!!!
Otherwise, things are going well and I am looking forward to my husband and boys visiting this weekend. Not sure what we are going to do since it is -5 degrees!!! Yes, all of you southern folk.
-5 degrees!!! So, i might have them bring lots of movies and some microwave popcorn. Maybe a few board games too. All for now. I will post more pictures later. The wireless internet has been acting up here at the house and the managers said that it seems to do that when it gets super cold outside. I hope Dad and Sue are having fun in Florida. (sense the sarcasm??) ha ha Hope you have a good time!
Love to you all!
Suzie

Fund Raising Update

The Lindsay Dean Heart Fund Committee will be holding a bake sale at the grand opening of the new Parchment Gymnasium this Saturday, January 17th. Basketball games begin at 11:00am and will continue all day.
All donations of bake goods may be dropped off at Steve and Tina Terry's breezeway, 2281 East G Ave. beginning Thursday.

Please save the date of Feb. 14, 2009 as we are preparing for our Sweet(heart) dinner and silent auction to begin at 6:30pm at St. Ambrose Church Hall, 1628 East G Ave. Parchment.
We are currently collecting new items for the silent auction and would appreciate anyone that could participate in getting donations to help out. When you get an item to be donated, please contact linda@wkzo.com to let her know. We're in need of gift certificates, dinners, trips, signed memorabilia, etc. At this time, we are not accepting "home made" items for this particular silent auction.

The Lindsay Dean Heart Fund Committee is once again going to give back to the community by hosting another American Red Cross Blood Drive February 25th at the Parchment Community Library and would like to invite anyone that would like to volunteer to help on this to contact linda@wkzo.com. Besides helping our local Red Cross, we have invited The Gift of Life and The Morrow Foundation to be a part of this.
Bake sale items will be available for a donation to our fund and we will be accepting your donated bake goods once again.

We want you all to know that YOU ALL are responsible for the Dean Family making it through to this point. In 2008 JR missed about 7 weeks of unpaid work and Suzie hasn't had a paycheck since June. We can all be very proud to be a part of this! We just can't give up on them and we need to continue our support.

Thank you,
The Lindsay Dean Heart Fund Committee

Trying to get things accomplished

This one is from last week but too cute not to add!!

So happy after bath time and getting a bottle.

Before bath time. She was sleeping so good on her belly! First time I have seen this. Normally she is on her side but seemed to make it all the way over today. Have I mentioned that she is cute??

Today was a day of going back and fourth with doctors and trying to get a plan for Lindsay made so that she can be moved to Moderate Care tomorrow. If they don't come up with something during rounds in the morning, then she will stay but they need one more bed tomorrow in the ICU because they have surgeries and need the space. It is either Lindsay or another baby but I am told that Lindsay is more stable. So, again we will probably change our address. In the meantime, I mentioned this morning that since we are here, can she get her rituxin dose. The answer was, "that is a good idea". So, she got it! That was simple enough. Why can't everything be like that?!!! She did well during the injection and no reactions as like last time. Please pray that this dose does some good so that she can have an easier time getting a tissue match for a heart. She looked so good today and I left tonight after feeding her and giving her a bath. Needless to say, I was in heaven!!! I found an outfit, that wasn't left in moderate care, and put it on her. We are still missing the bows, but she still looks adorable without one in. Not really looking forward to the move tomorrow because she is so happy here but sicker babies need to have her space. All for now...
Love, Suzie

Happy Birthday Princess!!

Happy 7 month Birthday Lindsay! We love you and I can't wait to see you this afternoon!
Love,
Mommy, Daddy, Cole, and Cruz

K= Crappy.........Crappy= PCTU......again!

At 12:30 am Friday morning we received a phone call that Lindsay was have dips in her heart rate and arythmas again. They immediately drew a blood gas and it indicated that she was high. So, they started her on a liquid bolas and a dose of lasix after to get her to pee out the K. They also drew another blood gas to do some other tests, and on that one, her K was too low. They immediately stopped what they were doing and then started a K IV. She seemed to be getting better a little after that but then her pressures were dropping slowly and then they made the decision to bring her to the PCTU. She only stayed for about 4 hours and then went back. Of course we checked on her all through the morning in Moderate Care and my phone at around 12 noon, nurse Amy indicated to me that she wasn't behaving again. She had spiked a fever and her heart rate was low again. So, because of the fever, they did a blood and urine culture. Also, checked her K, and once again, she was low. Back to PCTU we go. I called over there to talk to Jen, one of her wonderful primary nurses, and she said that she went over to Moderate Care to see her when she found out that she was headed in her direction and that she did look pale and like she didn't feel well. You are up to date now. They might put her on a continuous lasix drip to try and regulate her urine output. The problem is that she is given her diuretics every 12 hours, and after that is given, she has a huge dump of urine and then her K went pretty low. However, we were able to anticipate that so K was given appropriately. But, about a week or so ago, I mentioned that wouldn't it be easier on her body if we gave her diuretics 4 times a day at a lesser dose rather than every 12 hours at a higher dose? Well, until they decide what to do about the continuous one, guess what her schedule is now?? Well, I can't say that I'm doctor material, but I'm pretty proud and frustrated all at the same time. I wish they would have listened before. That's right, she is on every six hours with a lesser dose. :-) I called last night before nurse Jen left and Lindsay was almost back to her normal self again. WHEW! I called this morning and she just threw up for the nurse but she indicated that everything was fine and call back in just a few minutes and she could talk to me. I haven't asked this question yet, but obviously the rituxin has been put on hold. Dang.
All in all, Lindsay knows when we are planning to head home for a few days and then plans her protest!!! It is snowing like crazy here so hopefully things will be fine for my drive back tomorrow. I am going crazy not holding my baby!!!!
Love to you all.......
Suzie

PS Working at Cole's school yesterday was great. He really enjoyed having me there and the book presentation was great too. He did a wonderful job acting it out while I read to the class. He also loved being able to pass out snack and share his circle cookies (nilla wafers). I am so glad that I could be there for him. Love you buddy!

We have had a busy day!

Today we had some very special visitors. Angie and Natalie Hand are a fellow heart family and here visiting family over the holidays. Originally from Mendon, they are here from Alaska! They will leave next week but wanted to make it to see Lindsay first! Can you believe it! We were honored to have them today to visit. Angie and I had a nice lunch in the cafeteria before going to see the princess and then was able to capture some good photos of all of us and the two girls together. To read more about Natalie, I have added her link to Lindsay's rapidly growing list of heart friends. Like I said, I was honored to have them visit today and will cherish the fact that they took time out of their day to see us. Thank you and it was so nice to finally meet you in person!!!!!
OK, now for news on the princess. When we got in the room today to see her, I noticed that her O2 sats were down by at least 10. Normally they are in the high 70's to low 80's and they were in the high 60's to low 70's. They only reached high 70's when she was sleeping. So, of course the doctors ccuaght on earlier in the day and proceeded to do a chest xray. They saw a little fluid on her lung but nothing alarming what so ever. So, looks like Lindsay will be getting another tranfusion (keep donating that blood!!!) tonight and then planning on the rituxin tomorrow. If it's not one thing, it's another! Praying that her shunt isn't the problem yet but if things aren't improved after the blood is given, then they will most likely proceed with an echo to check her shunt status. Otherwise, she is smiling as normal but not quite taking all of her bottle because she gets tired towards the end. We have been tubing only about 20 cc's to complete her feed is all.
Yesterday we also had special visitors. Uncle Robb and Aunt Carole came over for the afternoon and then we all went to lunch. Also, my husband decided to surprise me for the day! They were slow at work so he left to come see his two girls!!! How nice to see veryone for the day. Now, I really can't wait to go home tomorrow and see my boys. Huh, have I mentioned before that Lindsay likes to tell us not to leave? hMMMMMM, have O2 issues....do we sense a pattern here? She is a little stinker! Well, back to the hospital for the evening and hopefully to bed earlier than 4am tonight!!!! My schedule is way out of wack!!!!
Love to you all and praying that she gets that oxygen back up to HER normal range.
Suzie Angie trying to play but Lindsay was too sleepy.

Look at these girls and their beautiful blue eyes!!!

Angie, Natalie, Lindsay and I

Her Highness...........

So full of smiles lately. Does the heart good to see.

The big girl in her bumbo!

Jody, Kirk, and Erin came for a visit this past weekend

Um, is she really sick??!!!

Lindsay will get her labs drawn in the morning to determine if she is ready for rituxin. Most likely won't be a problem since she received some blood about a week ago. Some good news is is that I did see her numbers today and the medicine IS working! Now, all we have to do is refrain from getting transfusions, and we should be able to get these antibodies down hopefully within another month or so. For example, the number that we want to decreased started at 89 I believe or something close. On the 23rd of December, blood was drawn and the number was 55! The hard part is that the number should be below 12. That's right, 12. GULP! Well, we have a ways to go but at least we have proof that the meds work and we just need to keep her healthy enough so that she can get it as often as possible which is about every two weeks. That was the goal anyway until she got an infection, had potassium problems, etc. So, rituxin should happen Wednesday or Thursday now. Also, I asked one of the docs about starting cereal and she said normally that would be fine but with hypoplastic babies and the decreased blood flow with only having half of a heart functioning, the perfusion to the belly isn't desirable and that is why most heart babies have problems eating. So, for the best interest of Lindsay, I have adapted to the fact that we will just have to cross that bridge when the time is right. Thrush looks to be improving already. I gave her a bottle at her 6pm feeding and she took it all! Go girl! She was sleeping for the majority of the rest of the feedings for the night, so they were tubed.
I also wanted to thank each and every one of you that posted uplifting words for me today. I know that I sounded pretty down but believe you me, I have been much worse! I just haven't blogged it all before. Some days I just feel like I'm going to explode and without JR here in person to vent to, I plastered it on here for all of the world to see! :-) Keep all of the positives coming this way and in your prayers throughout the day, please include that this medication will enable us to find Lindsay's perfect heart! Heart blessing to you all!
Love, Suzie

Dreaming of the day.......

when I can take my baby home. Today was a rough for me mentally. I think the hospital is getting to me and I am realizing that we have been here exactly 101 days! I hadn't counted until now because it would just make me crazy knowing how long it has been. The main struggle today was because Lindsay had such an amazing day, and because of that you would never know that she was a very ill child, that it was very hard for me to not pack up her stuff and tell everyone, "We are outta here!" I saw about four babies go home today and Daddy's bringing in the car seats with huge smiles on their faces. Why shouldn't they be happy? They get to bring their baby home! OK, Suzie, reality check. Some people have babies and don't EVER bring them home. What are you whining about? You still have your baby to love and cuddle with. Who cares what proximity it may be in. Well, just one of those days that HOPE has gotten the best of me and just keep praying for that one HUGE phone call to say that your daughter's heart is here and it is prefect and she will live to be 99 years old! Well, maybe not that long but I think you all know what I mean. Thanks for letting me journal my day!
Lindsay will be spoken about in the morning regarding her next dose of Retuxin. In fact, one of the PCTU docs came around tonight and I put a bug in his ear to find out when. So, I will keep you all posted. I wouldn't be surprised if it were tomorrow. One other development is that she has developed thrush. No wonder the kid didn't want anything to do with her bottle yesterday! The doctors discovered this on morning rounds and is now on nystantin to take care of it. Should only be a day or so and that will be cleared up. It is like an adult having a sore throat and the medicine is her cough drop. Meanwhile, she is being tube fed. I also spoke with the nurse this evening and I mentioned something about starting her on cereal. Heck, worth asking ,right? She said that she didn't see why not because she is already taking formula that has rice in it so she wouldn't be allergic to it. So, maybe we can do that soon. AHHH, the little things in life that make me happy. :-)
As for new pics of Lindsay.....I made the order at Walgreen's and just couldn't get there tonight before they closed so I will have new pics tomorrow. I promise!
Keep praying for miracles!
Love,
Suzie

Good Day

Lindsay has had a very good day today. She even had a few visitors. Cousins Jody, Kirk, and Erin came to see Lindsay today and she certainly was all smiles for them. With a little nap while we were chatting a bit. It was so nice to see them and hope that they had a safe trip back home. We miss you already!
JR left today to head home. He was supposed to leave tomorrow but decided tonight since we are supposed to get freezing rain here over night and was best to not have to drive in that all the way home. Probably the best decision. He starts back to work on Monday. Sad, I know, but the one who carries insurance has to work. :-( I am going home on Thursday afternoon to be able to work at Cole's school on Friday. Yes, I will remember snack this time!!! Still feeling bad about that one. :-) He is so excited and it will be good to see the boys again for a few days.
I know all of you are probably going through picture withdrawl but I can't download pictures with the laptop that I'm using. I don't have the camera software downloaded so I will run to Walgreen's tomorrow (your welcome Dan G!) and get all of the new ones loaded on a disk. She has been so happy and smily that I can't wait to share all of the latest ones. If you are thinking of visiting, now is definately the time because she is feeling so good. Looks like the beginning of the week she will be getting the second dose of Retuxin and please pray that this dose does some kind of good. The blood that she recieved this week will not help the numbers any but only time will tell. We aren't going anywhere and she isn't having any cardiac episodes, so bring it on Dr. G! Thanks again for keeping our sweet baby in your prayers. We love you all!
Heart Blessings~
Suzie

Happy New Year!!!

Lindsay started the new year off just like her mommy usually does.......sleeping!! ha ha She had a great New Year's Eve and the three of us watched the ball drop together. The boys were with my Mom and Bill in Lansing and I'm sure they had a great time as well. Yesterday Lindsay recieved some blood which seemed to make her look and feel so much better. She is up to 105 cc's by bottle and going strong. She is starting to, like I said before, get beefy for that new heart! She really does look great and maybe today we can take her for a stroller ride. Nurses, hint hint. :-)
I hope everyone had a safe and happy celebration last night and we hope to have good news soon. In the meantime, Lindsay will be in moderate care eating away and being happy! What a great way to start the new year!
Love to you all!
Suzie