Sunday, January 4, 2009

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

18 comments:

The Simmons Family said...

I can't imagine 101 days in the hospital. I know it could be my reality soon enough though. She looks so healthy so that makes it harder knowing that you can't take her home. Hopefully her heart will come SOON!

I pray for Lindsay and your family all the time! You have amazing strength!!

Andrea

Katie said...

Wow, 101 days...you are holding up so well! Even when you vent, it's so positive. I've been told time and time again that our attitude is everything, and you sure prove this on getting through rough times. I love your grateful heart, positive thinking and the pure love you have for that girl of yours. She's an amazing, beautiful little thing that I think and pray about daily. Hang in there Suzie! I can't wait to see your first cereal pictures, I'm sure she's going to love it! What fun to look forward to :)
Love and hugs to you,
Katie

Alison and Rich Lee said...

You just go right ahead and vent!!!! You are amazing Suzie. Lindsay is very fortunate to have you for a Mom! We pray for a new heart daily.

Love ya!
Alison

aimee gillespie said...

I'm not sure why, but this brought tears to my eyes this morning. I've thought about this a lot over the last few weeks. I've been following some of your other heart friends over there and when they post about going home, I can't help but think how bittersweet it must be for you.

We pray for your family daily and pray that Lindsay's heart comes quickly so that your family can all be together.

Heart Hugs,
Steve, Aimee, Ryan and Hannah

Our Family said...

Suzie,

We pray for your miracle each and every day. Lindsay is a miracle in and of herself, so I know her heart is coming soon. Although Luke wasn't in the hospital as long as Lindsay, I remember the feelings of seeing other babies go home, out of CVICU, etc. No fun! I am so glad to hear that Lindsay had such a great day, even with the thrush. It just goes to show you how strong she is! I pray that you have a better day, emotionally. It can be so hard and so lonely in the hospital. God bless you guys and your sweet babies!

Bernie Haberman
www.lukeslegacy.blogspot.com

Evie's Story said...

dear friend,
wish I could offer a hug...or take you out for lunch to get you away from the hospital...
But mostly I wish you could unhook the monitors and take sweet Lindsay home. I know that ache and I am praying for you on this very rough road. You are so strong and optimistic...but its okay to be down sometimes. We will all be rejoicing so greatly with you when that day comes and you can bundle her and walk her out those doors. Many more miracles to come!
Love,love!!

Amanda-The Family News! said...

Continued prayers for you all.

Julie Miles said...

Suzie,

Ethan and I pray for your whole family, especially Lindsay every night at our bedtime prayers. When I logged on to read today's post, Ethan came over as fast as his little legs could carry him to see his little girlfriend! As soon as he saw her, he just lit up smiling and laughing! I told him that we need to keep praying for Lindsay and he immediately folded his hands, ready to pray! So we just said an extra prayer this morning for you. Praying that new heart comes quickly and that your whole family can be reunited back home together very soon.

Heart Hugs,

Julie Miles

Steve said...

Suzie and J.R.,
GO AHEAD AND WHINE! You are some of the strongest people I know, and I would have set off the infant protection alarms long ago if I were you! You know, before Zachy's surgery he seemed so "normal" that I had a really hard time believing that he needed surgery. It was SO difficult handing him over to the doctors that morning... I really broke down in uncontrollable tears. So I can't imagine your strength and patience these past several months. In your mind you know Lindsay is sick, but in your heart you want to take her home and get back to normal. All I can say is that we continue to pray for a heart, SOON, and there are so many more of my family and friends that are praying for her as well. You have witnessed the power of prayer, and God will keep her in the palm of His hand. She is touching the lives of so many and teaching us how to be strong in the face of adversity. There is a purpose in all of this that someday we will understand. We know that, but as a parent it is so hard to accept. I have been reading more and more history from your blog this weekend, and I am AMAZED. You are a shining example of a heart family, indeed for any family! Hang in there, and know you are in our constant prayers. PLEASE let us know if there is any other way we can help!
Love, Michelle

The Butcher Family said...

Precious Friend,

Never apologize for sharing your heart...I have been concerned about those same emotions that you were sharing for you for so long. I am so relieved for you that you are giving them a voice...anger and frustration are okay. Take it to Him...He can handle it- trust me, He's heard a lot come out of my mouth, too!
Those little things like cereal will get you through...oh, and those beautiful eyes that you can just get lost in!
Praying for you, Suzie. You are an amazing woman and wife and mother. No doubting where Lindsay gets it from!
Love you so much~ Rebecca

Anonymous said...

We were unable to access the internet over the holidays. The prayers for Lindsay continued but I was missing my updates on her. Oh dear, 101 days! Wow.
You are amazing parents! Lindsay and your boys are so blessed to have you both. It is so hard being torn between the hospital and home with your other children. Our prayers continue for Lindsay as you continue to wait for her new heart.
May 2009 bring many blessings and miracles.
Sandy, Ethan (8,HLHS & PLE) and the rest fo our family too!

Anonymous said...

I know its hard to look at your angel and think she's perfect. You know better than anyone she's not. Can you imagine being home and her have another potassium issue or heart rate issue. Hang in there and have patience. You will be home soon enough and when that happens you won't have any nurses helping you. Just hold your sweetheart as much as you can, kiss her as much as you can and focus on her not the hospital bed or the monitors. Remember every moment no matter where it is, is a precious thing.
Michelle Dickson
p.s. we miss you!!!

Anonymous said...

Dear Suzie and family,
we wish you a wonderful and happy new year. We are praying for the new heart and that everything will go well. I can absolutely understand your feelings about wanting to get home. It took you very long to feel that. I would not have been so patient. You and your family doing such a great job and I can not begin to imagine how you all are doing it. I would have had some meltdowns in the meantime. We are keeping you in our thoughts and hearts. Hope to see you soon.

Love Ute

Anonymous said...

You guys have been so strong with all of this. I cannot imagine how you have been able to manage everything. I am sure it is tough for you... and for Jr... with him going back to work. It is hard enough to handle it together, let alone separately. I hope you can ALL be home soon. Hang in there. We can't wait to hear good news for Lindsay.
Cheryl, Craig, Clayton and Grace

Amanda Groulx said...

Suzie,

Wow! A little vent on the computer followed by a screaming fit would only get me started! I can't even imagine how frustrating it must be for all of you! I know we keep saying it but you guys are doing an amazing job getting through each day and I know that it will be Lindsay's turn to go home one day soon. Take care.

Love,
Amanda

Krissy said...

I havent been at this hospital that long, but I hear you about it getting to you. I'm right in the next room if you need to vent!

miangelito said...

I can truly say you are a inspiration... We are praying for you constantly hlhs sister. Lots of love to you and prayers....
Your fellow heart brother Miguel and family

Anonymous said...

HANG IN THERE SUZIE!! TRY TO LOOK AT EACH BABY THAT LEAVES THE HOSPITAL AS PROOF THAT MIRACLES DO HAPPEN!!!! LET IT GIVE YOU HOPE WITH EACH CHILD THAT GOD HAS HELPED, AND KNOW THAT LINDSAY WILL BE NEXT ON HIS LIST VERY SOON.

PLEASE LET US KNOW IF THERE IS ANYTHING WE CAN DO TO HELP!?!? WE ARE ALWAYS A PHONE CALL AWAY...ANY TIME OF THE DAY/NIGHT FOR FURTHER "VENTING":)

LOVE-DAVE, LISA, DAVID, AND GABBY