6 months..............

As I sit here in our room at the RMH waiting for a return phone call, I just can't help but get emotional. Tomorrow marks 6 months of us being here at U of M. Thinking back to all that our sweetheart has been through since the beginning of October is just simply amazing that she has persevered through it all. The only explanation that I have for it is that God has a plan and I can only hope that because we have been here for so long, that the end result will be that we take her home with a new 4 chambered heart for her to enjoy for a long time! I ask myself allot...."Why is God having us wait so long to have this happen?" My logical (or hopeful) answer is that the princess is waiting for things to be just perfect and God is going to oblige. She is just the most wonderful little person ever! She is making new leaps and bounds everyday and it is so fun to see her go through those "normal" baby things. Yesterday, she waved! Backwards of course. ;-) And you all know me by now.....I cried! hee hee I also picked her up under her arms and lifted her up and down......she laughed! Of course, I cried with such joy! Oh, I wish we were home! I so want to take her for a stroller ride in the beautiful park that we have as our backyard and all of the simple things that we would normally do as a family. God has a plan and my heart says that He is waiting for that perfect time.
Before I left this past weekend to go home, a beautiful family from Kansas moved into Moderate Care with us. They had a son, Jonah, which I think looked to be around 1 1/2 or just about 2 years old and then their new addition, Hope. She looked about 3 weeks old. Just a beautiful little girl with a beautiful family to go right along with. Hope is a fellow heart baby. While I was at home, I did some shopping for a few things for work and a couple of seasonal scrap booking items. Of course I always end up around the frames. (I have a fetish with frames!) I walked around the corner and there it was. The perfect frame for Hope! It was pink with a cross and hearts on it. It also displayed her name right in the middle at the bottom. I love this name as it also has such a powerful meaning. So, I bought it for her. I got back to the hospital around dinner time on Monday and Hope was gone. I asked the nurse which room on the floor she was in so that I could get her this present. Her look was all I needed. I was in shock. Hope passed away Sunday evening. Apparently she had a clot pass through her shunt and of course at that time, there is nothing they can do quick enough. Of course, I sat, holding Lindsay, and cried. My heart ached for them. Why God? Why take her and give us all this time with our baby?
I tried to figure out how on earth I was going to get this gift to them. Then last night, Sara and Aaron appeared. It was like a gift given to me because I really needed to see them and wrap my arms around them. Thank you God!
So, when I was sitting with Lindsay after I heard the news of Hope's passing, I just sat a rocked with her trying to figure out why we still have her. Why have we been so lucky? Yes, folks, I said lucky. We are. We have had this wonderful time with her to see her grow and develope into a delightful little person. Remembering back when we first found out about our "little Sweety" (that one was for you Dad!) we had all of these tests done to see if other than her heart issue, if she could possibly have the potential at a good life. No parent should ever have to decide this but all in all, we chose life! Lindsay has turned out to be an absolute miracle and we have enjoyed, even the bad, every single minute! Thank you God!
I also can't help to think if this whole thing is a lesson for us? Is it a lesson to learn more about Him? Is it a lesson to care more, love more, live life to the fullest more? My husband sometimes tells me that I look into things too deeply. Yes, sometimes I do. But, sometimes I do for a reason but really don't know what that reason is until later when something happens and it "smacks" (for Rebecca! ha ha) me right in the face! Oh, how I wish I had the answers...........
Now that I have every one of you in tears, we continue to ask for your prayers for our princess and that she will be home with us.....in His time. Love to you all as always~
Love, Suzie

The popular girl........

Ok, well most of you know what I do for a living. If not, well, one of my jobs is a travel consultant. Not too long ago, I booked some from friends from high school on a trip to Jamaica. I received this photo from Sarah this morning..............of all the things they had to remember to pack, they packed these..........LINDSAY BRACELETS!! THANK YOU! LOVE IT!! LOVE IT!! For those of you that know me well and for those of you that have gotten to know me better through this blog, you know for sure that when I opened to this photo in Sarah's attachment to her email, well lets just say I couldn't see the screen any longer! What an incredibly touching thing to do for our daughter. Again, Thank you!

PS You guys look great!!! Hope you had a drink, or two, or three....for me!

I know she's ours but..............

SO STINKIN CUTE!!!!! Can you believe that these were taken during her visit to the ICU?? Patti, you are so unbelievably fantastic!!!! THANK YOU! THANK YOU!

ENJOY!

Happy St. Patrick's Day!!!

Big girl got to try cereal for the first time today!!! She was looking in the bowl for more!!

She thought it was funny to spit it! Doesn't any kid??

Cole was able to get her to laugh. It was soooo cute!!

My 1st St. Patrick's Day

Mommy calls this my "cheesy" smile.

Sorry it has taken me so long to update!!! Lindsay was moved back to Moderate Care on Saturday. She is feeling much better and looking just great! She is slowly getting her oral potassium added back to her feeds and is half way there already. Last night she had a little episode where her O2 sats just wouldn't come up out of the low 60's. Xray showed that she was a little wet on her right lung so they added an extra dose of lasix and a nasal cannula. She was at 2 liters of oxygen last night and she is down to 1/2 liter tonight. The princess does things in her own good time so she should be as good as new by Thursday and maybe tomorrow night. She pulled her NG out today so we are leaving it out until we absolutely need it back in. She got so mad and upset when we tried to put it back in that her o2 sats were kind of scary and took a bit for her to recover. She does so well with her meds and feeds orally that this shouldn't be a concern to leave it out. It's when she isn't feeling well that she really need the NG tube. All in all she had a great last few days and reached a milestone tonight by trying rice cereal for the first time. She did really well! I think she will have the appetite of her younger brother! Uh oh! ;-) Well, mom is exhausted and going back to the RMH for some R&R. Enjoy the photos!! I will probably post more in the next few days.

Love to you all!

Suzie

Moderate Care to a Suite!

Well, the title means that Princess Lindsay thought that her birthday celebration should be spent with concierge service along with 24 hour room service!!! Yes folks, she got her #10 suite in the PCTU for the occasion. Miss Lindsay wasn't feeling herself today and not keeping her feeds down since 3pm this afternoon. Long story short, with the attention of 4 attendings!!, they didn't want to take any chances with her crashing in Moderate Care, so they made the decision to move her to the PCTU hopefully just for the overnight stay. It started out with noticing that her heart rate all of a sudden spiked up to the 170's and a slight fever, which go hand in hand. Then she started to act very irritable and just not herself. She had barely even taken a nap all day and was uncomfortable. Cultures were drawn, blood gasses were taken and came back just fine, and the consensus was that she might be a little dry since her lasix at noon didn't have a very good result which was only 26. Her normal after lasix is around 80-100. This means that she didn't have much to get rid of. So, after a bolus of fluid and a short nap, she was much better but doctors still wanted to move her just in case. So, tonight before I left the hospital, the princess now has a courtyard view, privacy, concierge service, Mary Poppins was playing, and pedialyte on the food menu. Praying for the move back to Moderate Care tomorrow. Whew! What a day and mom is exhausted! More tomorrow.......
Love, Suzie

WOW.........9 months old!

Today, Lindsay is celebrating her 9 month birthday! I just cannot believe that she is this old already. The sad part of this is that of her 9 months on this earth, she has spent 7 months of them here in Ann Arbor. But, there is a happy part as well. She is so amazingly happy and without all the tubes and monitors, she absolutely looks like any other "normal" baby. We couldn't be more proud of her! God has been so good to us in giving us this time with her. We just pray every day that there is much much more time in the future. Happy Birthday Princess!!!!

The Happy Princess

I know that I am her mother and all but man, is Lindsay photogenic or what?!!! Really people, she DOES have a serious heart condition!!!!!! We count our blessings everyday that she looks as good as she does and despite all the tubes and monitors, she is a wonderfully happy baby! Our baby will be 9 months old next week! Patti will again make a special trip from West Olive to photograph the princess and we can't wait to see her! and Tricia too!

I have also included some photos of the boys while I was home with them. The one of Cruz is when he was at his swim class on Wednesday. I was so happy that I was home to be able to watch him. SO CUTE!!!

The latest on the medical home front is that Lindsay's CD20 level was not high enough this week to be able to get her Rituxin. It probably won't be for a while. For example, her numbers should be around 1000 and it was 13. Yes, long way to go. The bright side of all of this is that her PRA number has improved but that is all that I have heard. We are going to try and track down Dr. G this weekend to see if he can get us that new number. Looks like CellCept is working a little we think.

JR is feeling better and when Lindsay falls asleep this afternoon, we will sneak out and head to AutoRama at Cobo Hall for a few hours. Something fun for him to do before he is back to work on Monday.

After a rough week at home, I'm so glad to have my baby back in my arms! I will miss the boys terribly but they are doing some cool things at home to keep their minds off of things.

Thanks for the continued prayers and support for our family. I am sitting here today writing this not being able to keep my mind off of the Gledhill family. They are burying their baby girl today and the thought of doing that is just awful. Gracie girl, you are forever in our hearts!

Love to you all!

Suzie

Celebrating life........

Please pray for the Gledhill family as they lost their Gracie girl. I cannot begin to tell you how frightened we are. But, in life, there are no guarantees, every little person is different in so many ways, and unfortunately Gracie's life wasn't as long as everyone wanted it to be. She will have a wonderful life in heaven. Her heart is now whole. My bet is that another very special little girl was right there at heaven's gates to greet her! Annabelle will just love having another beautiful angel to play with. Please hold the Gledhill's close to your heart tonight. We are grieving with them.

Lindsay:
Well, the Princess has been with her daddy for the last couple of nights. That isn't the case tonight though. Daddy got sick. :-( Of course every time JR takes vacation, he gets sick. We can almost place bets that it happens. Comical actually. Poor guy. I know it is just killing him that he is sooooo close to her but can't see her in fear of getting her sick too. He is being super cautious and staying away. Not to mention that we got our wonderful roommates back in Moderate Care. Olivia and her awesome family is back with us! She is doing great after her hemi-fontan and, although I haven't heard this from them, they will probably get to finally go home late next week. (my calculations could be off!!!) Olivia has HRHS and needed her hemi early like Lindsay. Thank the Lord that her little body accepted the surgery fine and hopefully they won't have to return to UofM until her Fontan which will probably be around 2 years old. Prayers were answered for this sweet little girl and her family!!!
If all goes well tomorrow, I will get to have Lindsay in my arms around dinner time. If things take a little longer at work than I plan, I will go back first thing Thursday morning. I told JR that if I come up there, I better not get sick!!!! No pressure honey! :-) Can't wait to see you both!
Love to all!
Suzie