Lovin' Life!

AHHH. A beautiful day at the beach! Bill and Elaine Burdick graciously invited us out for the day and boy, am I sure glad we went! Yes my southern friends, THIS is Lake Michigan! Pretty nice huh? It was a lot to tow with one person for an outing, but I got some sun and even a swim in the pool! As I said above, Lovin' Life!

OK, this one is for you Kyle, and for my old twirling friends! Can you believe this shirt?!! ha ha Ashley found this for Lindsay before I even had her. Too perfect! (even though the "twirl" on the shirt probably wasn't intended for baton twirling,but it does to us!)
God is good! I miss you Tommy!

My precious baby's first time to the beach! Although she didn't touch the sand, (not yet anyway!) Lindsay enjoyed being out in the fresh air and listing to the sound of the waves crashing on the shore. Oh wait, that was me enjoying it! ha ha Can you tell that I needed this?!!

Cara gave Cole a little lesson in body surfing while we were in South Haven and after that, we couldn't get him out of the water!

Cruz wanted nothing to do with the water. He was entertained just playing in the sand. I LOVE this photo of him!

Now, this one I will cherish forever. At Cruz's birthday party, we were surprised with some visitors from Pensacola! My brother Dan, and my nephews, Braeden and Camden, flew up from the south to visit. This enabled us to get this great photo of all five grandchildren with great-grandma and grandpa!

Cole getting some playtime with his favorite sister!

I hope I haven't sent ya'll (getting ready for OUR trip south!! ha ha) into photo overload! Enjoy!

Love, Suzie

Birthday Boy!

Happy 3rd Birthday Cruz! We hope you have the best birthday yet!

We Love You!

Mommy, Daddy, Cole, and Lindsay

Enjoying the normal baby things

I would like start off by sharing with you the present that Lindsay received in the mail today.

This beautifully made baby doll came from the people of Baby Be Blessed. They were generous enough to feature Lindsay as there "Give a Blessing" recipient for the month of July. Because she was nominated, not only was a lot of money raised for the Lindsay Dean Heart Fund, but she is also eligible to received one of these amazing dolls that can be made ANY way that you like! The stitching and detail is incredible and if you need a unique gift idea for anyone, this is what I would highly recommend. All I had to do was give a description of what I would like the doll to look like, and walla! The most precious part of this doll is the meaning and bible verse that goes along with. The verse is stitched on the belly of the doll and fits the princess to a tee! I think they nailed it when it comes to resembling Lindsay! I have the website linked to the blog, so please check it out!

See, Lindsay loves it!!!! I see in my future re-stitching the bow in the hair a few times. ;-)

This photo is one of the reasons I titled the post what I did. Now, this is a NORMAL baby thing! In the hospital, this pink duck was definitely NOT a hit but now she just loves it! I had a yellow one for the boys to bathe in when they were little so that they didn't slip and slide around the tub. It works great! I am so thankful that I could do this with Lindsay too!

This is the verse stitched to the belly of the doll pictured above. We decided to name her Lily because Cruz used to call Lindsay this. Cute huh? The bible verse is perfect for the princess!

Again, another vision of normal! The precious thing fell asleep in her saucer. I had tears in my eyes taking this photo. I have many photos of the boys asleep in their saucer. As you can see, Lindsay is adjusting and becoming a very healthy little girl and we couldn't be more thrilled! As the t-shirts say, "Life is good".

Love, Suzie

Gotta give the people what they want!!

Cole and Cruz enjoying themselves on Uncle Dan's wind surfing board.

These t-shirts were sent to us by the Butcher family. Brittney's heart transplant was in December of last year. U of M zipper club supporters!!! Oh, and those crazy football hats. Too funny!

I found Cruz like this one morning last week. Sunglasses are of course, Lindsay's given to her by nurse Megan. Cruz likes them too! ;-) Stylish, dude!

Real enthusiastic about going to her appointment! ha ha Notice the new big girl car seat??

Yesterday morning before we left for A2. One of my favorites for sure! See her top teeth coming in?

Big girl! AND the very first time wearing shoes!! Can you believe it?! Well, I can. What has she needed to wear shoes for until now?

Lindsay can finally wear fleecy pajamas! Before with her hypoplast heart, she would over heat and start to have problems. Now she can stay toasty warm while she sleeps. An actual NORMAL baby thing! WOO HOO!!

We went to the lake on Sunday and Lindsay was completely content staying indoors in the air with Aunt Carol and Uncle Jeff. It ended up getting extremely muggy and was wise to keep her in while her brothers played outside in the water. She was still dressed for the occasion and had a great time!

AHHH, nothing like a hospital background.....again! Yes, this was taken during our two night stay at hotel Mott. She was feeling much better when I took this photo and we left the next day.

The joys of a g-tube feed! ha ha No, she didn't throw up, she just thought she would take the adapter out of her g-tube and suck on it! Well, not that great with the aim!

Yesterdays clinic visit at U of M went extremely well. Dr. G's (Gajarski that is, for someone that asked me about this a while ago) actual words were, "She looks fantastic! Keep doing what you are doing because she looks fantastic!" I couldn't help but have a perma-grin after that was said!

The only other thing that we have to follow up on here in town is with the ophthalmologist. A doctor from U of m comes down to the Kalamazoo office every 2-3 months and Lindsay will see him when he is here. They are concerned with her right eye not being completely centered. Obviously it is because of the damage to her brain because of the arrest in July. They are confident that she can see out of it, but it needs work to strengthen it. She may need a patch on the left eye to try and make the right eye work as it should. The left eye is definitely compensating the work load of the right. Overall, not too shabby I would say!

Back in the groove today and took her this morning for a blood draw. Praying that all levels are good and we can keep meds right where they are.

Answering a question from a few says ago from the Catlett family from Texas: Yes, she tests positive for VRE as well. This was found in her stool way back in October and she still tests positive for it.

I also wanted to take a minute to thank all of you that prayed for the Butcher family yesterday. All of those prayers were answered because baby Luke Graham Butcher was born yesterday happy and healthy and sooooo pretty!! All 8 lbs 2 ounces and 21 inches of him! Yes, baby boys can be pretty!! ha ha Send continued prayers for Rebecca's healing after her c-section and that they all can go home soon!

Heart blessings~

Suzie

Prayers

We are preparing for a fun filled day in Ann Arbor tomorrow. (well, a little sarcasm this time!) This will be Lindsay's first official clinic day post transplant. That means that all testing will be done. Blood, ekg, echo, etc. We also get the joy of getting a swallow study, seeing the neurologist, and opthamologist. First appointment starts at 9am and last one is at 1:45. WHEW! I'm sure with a few visitors along the way. ;-) Yes, nurses, the princess will arrive around 8:45am! ha ha
Please pray that everything goes smoothly and pray that there are no signs of rejection. She hasn't indicated, but we never know.
The main reason that I titled this post "Prayers" is because I am requesting you all send them to a very special heart mom friend of mine, Rebecca Butcher and her husband Scott. Their little miracle, Luke, will make his appearance tomorrow and I cannot even imagine what a roller coaster of a day this will be for them both. So hard to imagine that this baby will not be Annabelle but then again so excited that because of Annabelle, Luke is here. Man, I just don't know what to say. I just shed happy and sad tears all at the same time as I'm sure they will do tomorrow too. I love them both dearly as because of them, I prepared for Lindsay. When they lost their precious baby girl, I fell apart as if she was my own. Now, they will have another beautiful gift from God and I ask that you pray for their strength for tomorrow. Strength to get through all of the emotion and enjoy every minute of what His plan has brought to them.

I know I don't have pictures up as promised (yeah, slacker I know!) but soon! Lots to do!
Love, Suzie

HOME!!!

We arrived home late evening on Friday and Lindsay has been doing great! Her stools are back to normal and no more throwing up. She did test positive for c-diff (which explains the diarrhea and vomiting) and has been placed on the antibiotic Flagl for 7 days. This is something that pops up frequently in children or adults that have been hospitalized for a long time. Is 9 1/2 months a long time?? ;-)
We are FINALLY getting to all go to the lake for the afternoon as a family so I will post more photos of the princess later on tonight or tomorrow. Thank you again for your continued support and prayers. I will take just two nights in the hospital ANY time!!!!
Love you all!
Suzie

Plan of attack

So, she has done fabulous with her 50cc/hour feeds since 4pm. At midnight, we start every 2 hour feeds of 100 cc's given over 30 minutes. Then at 9am, we will start with full feeds of 150 cc's every three hours given over 30 minutes each. By then, we can tell the doctors that she has tolerated them and maybe because they will be impressed, they will let us go home. No diagnosis yet and we all have a few theories, but who knows. Looks as if we will dc her reglan and possibly her lasix. We will know more tomorrow and pray that the feeds continue on this good streak through the night and on.
Sweet Dreams~
Suzie

***** Update (10:39 pm) Stool sample came back positive for c-diff. Just great! We might have to wait until morning to get the decision on what they do for antibiotics. Post transplant, VRE, and C Diff. Perfect! (yes, sarcasm again!) Maybe saving the Happy Dance for another day. ;-(

Feedings going good!

Two down, and they stayed down!!!!! Third one went and then Miss thing decided to stick her fingers down her throat......so a little of it came up but the good news is that not all of it came up! So, other than her little stunt ;-), a-ok!
Update again soon~
Suzie

Feeds

First feed is going. We are starting VERY slow at 50 cc's over 10 minutes. Cross your fingers that she keeps it down! Oh, and the diarrhea has begun. ;( Maybe it all is just a bug! I will update in a few hours.
Love, Suzie

Admitted

After many lengthy conversations with doctors and nurse practitioners, we headed to Ann Arbor to get Lindsay checked out. She had started vomiting on Saturday night. After that incident, we then just proceeded with strictly g-tube feeds after her month long run on oral feeds. Things went fairly well on Sunday but with still a few throw ups. Monday was great! We stayed with all g-tube feeds and she did great all day. Then Tuesday came. Still vomiting and now it was getting concerning because we knew full well that she wasn't getting enough in as far as fluids were concerned. The most concerning thing though was that she was still vomiting with g-tube feeds. Now, our understanding was that she needed the g-tube to eliminate any possibility of throwing anything up! Well, not Miss Lindsay. She managed to do that as well! For those of you familiar with g-tubes, no, she does not have the Nissan wrap which wouldn't be shocking if it came up in discussion today or tomorrow. In the ER yesterday, a chest x-ray was done and that looked just fine. A g-tube x-ray was done with contrast and that looked fine as well. Our words exactly were, "Oh, crap!" Well, then what is the problem? IV fluids were started because as we all predicted, she was a little dehydrated. She is still on them today and looks like we will trial feed today to see if the extra fluid to plump her up a bit will help in the feeding department. In other words, thinking that the dehydration started to take its course on Saturday but she hadn't been tipped over the edge yet to not throw up everything. Besides the vomiting, she has been as completely normal! Just every now and then she will puke and then go about her business like nothing was wrong. What broke the straw for me was yesterday morning after the she threw up her morning feed of only 50cc's, she was starting to look a little pale and not quite herself, yet still smiling and playing. So, called Dr. G and here we are. Today will be all trial to see how she does after getting her fluids. Her lasix of course has been DC'd and I'm wondering if she has simply grown out of that and doesn't need it anymore. She was cut back from her 2x a day dose down to one and wondering if her one dose is now too much. Things that make you go hmmmmmm?? JR and I had our first experience of actually sleeping in the hospital room with the princess. That was fun! (sense the sarcasm?) With one very small couch and a glider rocker, I guess we made it work but both of us are extremely sore! Why did we stay you ask. Well, the Med Inn is full and we decided that since we weren't here for a lengthy stay, we would bypass RMH. AND there is a plumbers and pipe fitters convention in town and all hotels are booked or at skyrocketed prices that we aren't paying right now! Call us cheap, but rather than paying $120 plus a night at a simple Red Roof Inn, we will sleep in a room with the princess. And trust me, I pulled the travel agent card and no discount was given. ;-) Besides, we get more cuddle time staying at the hospital!
The docs will be rounding soon so I will update a little later.
Love, Suzie

Some firsts........

As a mother of a girl for the first time, I have been waiting VERY patiently to do this.............. aren't they the cutest, and the prettiest, toes you have ever seen? ;-) Today was so good!!!

She was posing a little earlier this afternoon so I thought I would take advantage of the photo op. Isn't she getting chunky?!!! She is doing so fantastic! She has gained 2 pounds since we have been home already and has another weigh in tomorrow. AND look at those eyes! They have been focusing so much better since we left A2 just a few short weeks ago. She is also focusing in on things further away so all of this is extremely encouraging that her recovery is going well! WOOO HOOO! AMEN!

Yup. You can thank nurse Bethany for this bad habit! ha ha Too cute to not photograph!

The grin just melts my heart.......and her daddy's too. Lindsay is getting more "centered" with her sitting up like she was before transplant and her arrest. We also witnessed her getting on her knees. She is still working on the combo of the knees and pushing her body up with her arms. She'll get it soon I'm thinking. She has therapy once per week but we have been working quite a bit in between those visits.

Lindsay looks like such a big girl in this photo. Carlee's aunt Angela made this dress for her along with a few others. She even put zippers in the side in case she was still attached to machinery, she could still look as cute as ever. ;-) Angela, you are a clever one! As you can tell, being home is treating the Princess just fine. She is happy as ever and becoming herself again more and more everyday. She is getting stronger and is eating orally perfectly without the gagging and choking as she was doing pre-transplant. Her tacro and cell-cept levels have been a little low so we continue with the weekly blood draws until they are stable for a few weeks. I think they are off because she is growing so much now that she has that perfect new ticker! The downfall to the higher doses of meds is that she is stooling more and her bottom can get pretty tender. So far so good on staying on top of that. Her brothers are just loving having her home. They interact with her just great and she just love to watch them play. She received a doll (2 actually) from my grandparents and one of them giggles. Lindsay will look at it and giggle right with it. It is the cutest thing and I will try and video it and post. As you can tell, we are enjoying being home and getting into a routine. I think I have it down to where I like it and things are going smoothly now that Dr. appointments can be spread out more. We go back to Ann Arbor on August 18th for her first check up since discharge. This will be an all day event to do the once over on the princess to make sure everything is still a-ok. Please pray that that is the case. She is showing no signs what so ever of rejection and we are thankful. We pray everyday that it will be a good one and blessed that we have it with her. I have been long winded tonight so off to bed I go. More again soon~

Love, Suzie