Date Set!

OK, Thursday is the day. She is most likely first case and will be in by 8 am. Things can change from now until then, but for now, she is on the schedule for Thursday. It has been a long day anticipating the meeting results so sorry for the short post. Lindsay is currently taking her nap before bedtime :-) and is doing just fine. Still on oxygen but still acting like our little princess.
Heart Hugs-
Suzie

Surgery date update

The doctors and surgeons have a meeting this afternoon and Lindsay's case is the topic of discussion. We will know this afternoon sometime on a date for surgery. In the meantime, she is doing just great. Amazingly enough she has actually taken 4 ounce bottles since we have been here. Must be she knows she is in for surgery and trying to bulk up a little. She had only taken 3 ounce bottles at home! So, another day of waiting but soon that will be over and we can take the next step in this whole thing. We are mentally prepared and know what to expect except this time I have a feeling this will be even harder to hand her over for surgery. We have gotten to know our princess and her wonderful personality. It will be rough to see her with all the tubes and wires and not having her smile at us. However, she should be good as new in no time. We thank God that we have gotten this far and rejoice in the fact that we still have her. She is a blessing for sure!
Currently she is on 3 liters of oxygen and her oxygen saturation are sill inthe high 60's for the most part. So, that is the reason for us still being admitted. No IV's just yet, just monitors. After the news today, we are going to run some errands so that later we won't have to leave our baby's bedside.
We would like to again thank everyone for their uplifting words and prayers for our daughter and family. Words can't describe how much that means to us.
Next post will be later today.....
Love, Suzie

Finally!!

I finally got this darned computer in her room at the hospital working!!! Mom explained the situation pretty well I think. We were told tonight that we won't have a set date until Monday sometime for surgery. So, just a waiting game until Monday. Thank God it is only one more day to wait! I just want to send and special "thank you" to my Mom.........she went right over to our house with Cruz in hand and started our laundry and made us a few meals to warm up here at the hospital so we don't have to eat out everyday. Not only does it help us save money, but helps keeps the calories low!!! If it weren't for you, we would still be there doing our laundry. Thanks Mom, we love you very much!
Well, we are currently waiting for her blood transfusion to take place. They put an IV in her foot tonight, which lowered her oxygen levels even more because she got so mad. They have her on more flow and they are coming up a little. By looking at her, she looks like her normal self. It makes me wonder how long her sats were this low since we last went in to the cardiologist on the 11th. Anyway, she is happy as pie like usual and eating fine too.
We are thanking God tonight for having us do this heart cath here at U of M. We were going through the scenario if we were home. They would have done the cath, discovered that her sats were way too low, and then she would have probably taken an ambulance ride over here. We are sooo thankful that Dr. Loker had this done here when he did. God had the plan all set for us and even got us in at RMH. Yes, hotels this weekend here were $250-$300 a night! That was even my travel agent rate. Can you believe that?!! That is completely nuts! What a Michigan football game creates. By the way....how about that game,huh?!!! GO BLUE!!
Lindsay does have a leaking tricuspid valve and her shunt is narrowing but not so much that she is in trouble in the near future. Because of her awesome weight, the cardiologist and surgeon feels that she is ready for the Hemi. No other worries however except for the darned pulse ox.
She had Papa and Uncle Dan visit her today. Of course, after the game. Needless to say they sounded a little hoarse after their exciting day. It was nice to spend a little time with them tonight before they headed back to Kalamazoo.
Well, I'm exhausted and Lindsay is about ready to eat. Until tomorrow-
Love , Suzie

Saturday update

After spending the night last night, the decision was made for Lindsay to stay at the hospital. We thought she was just having trouble recovering from the anesthetic, but she was moved from a regular floor room to moderate care where they can monitor her closer. Her oxygen levels weren't good, so she is being assisted with oxygen. Suzie and JR were able to get into the RM house, which was great 'cause you know there's a home football game today at U of M and the hotels were out of sight!

Suzie and JR made the drive home to pack for the next two weeks because they have scheduled Lindsay's surgery ASAP. That means that they're putting her on the schedule as soon as they can, however she wasn't critical enough to have to do the surgery immediately.

While they were home getting things in order, a message came in from U of M that they will need to give permission for Lindsay to have a blood transfusion as soon as they get back. Nothing serious, she's had this before to get her levels where they want them to be.

From what I understand her heart is slightly enlarged, has a leaky valve, and her shunt has narrowed. This makes her a prime candidate for her next surgery so they can also fix what needs to be tended to. Luckily her weight makes this possible sooner than normal for an HLHS baby.

Cole's having a great time with the Winter's at Disney, Cruz is with Bill and me, Tina has the dog and we're in "help mode" for the next couple of weeks.

Suzie has promised to get her passwords in order so that she can update in more detail tonight, I just didn't want to leave all you stalkers on pins and needles any longer on an update.

Heart Hugs to all of you,

Linda

Cath update #1

They have begun to measure pressures and saturation's......all is good so far.

I forgot to mention that earlier when we went to the cafeteria for lunch, we met both Joshua AND Braeden today. Two heart children that are on Lindsay's blog. Can you believe that we ran into both of them! Braeden was here with his Mom and Dad visiting some friends that are here at U of M and later for a check up. Joshua was here for an appointment. Both boys looked great and were smiling as big as ever. Although brief, it really touched my heart to be able to meet them at last.

They say another update in about 1/2 an hour........

Heart Cath underway...

They were able to get the lines in just fine in her groin and they are doing her echo right now. After that, they will proceed with the cath and that could take up to two hours. I will update every time a nurse comes in to give one.
On another note, we had to hand off a second child today, and that stunk to say the least. We saw Cole leave yesterday on a plane to Florida with the Winter's. When he started his walk down the jet way, I cried like a baby. I handed off my angel baby today, and cried as well. Rough last two days. However, the bright side of all of this is that Cole, I'm sure, is having an amazing time at Disney and that Lindsay will get through this obstacle just fine as well. Just having her put under is hard. All of the side effects tend to scare you, but thinking the positive right now and the results later this evening.
Will return soon with some news.....
Suzie

3 month photo preview and update for Friday

I have gotten a lot of wonderful compliments on Lindsay's new photo. So, to see a few more, just go to Patti's Portraits link on the left of this page and click on the blog. My best friend, Dani, and her daughter, Brooke, came along too for the photo shoot. I am so excited to see the others. Patti likes to tease us with these wonderful pre-views! ha ha As usual Patti, you do a wonderful job and you are an extremely talented photographer. We all had a great time and it was good to spend more time with you this time around. It was fun catching up.
On another note, all things are set for Friday. We have to be in Ann Arbor at 10:30 and the cath will begin around 12noon. That will last approximately 2 1/2 hours and then up to 4 hours recovery time after that. However, we will know the results before the 4 hours are up and I will post the results as soon as possible. Jr, Lindsay and I plan to stay the night on Friday since it will be a long day and in the morning possibly have breakfast on State St. ........you Michigan fans understand what I mean.......to all others, we will be tailgating!!! :-) Even though our wolverines haven't been that impressive, we still like to tailgate like the rest of them. That is if Lindsay is up to it too. Hopefully we can drive home from there but something in my gut is telling me that we might stay over there for a while. Lindsay has been pretty blue around her mouth lately. She seems to be acting and breathing as normal for her, but I think she is definitely starting to outgrow that shunt. Anyway, we are going to take Cole to the airport on Thursday. That will definitely be a bittersweet departure but I have a plan in the works if Lindsay doesn't have surgery. I won't say in fear on jinxing it, but I will tell you that he will have a big surprise if we can pull it off.
Please put Lindsay in your prayers on Thursday night as she will need the strength to make it through the heart cath with flying colors.
With love,
Suzie

New Schedule

Hi all! Well, we have a new schedule. The final decision is that we take Lindsay to U of M on Friday the 26th and that day she will have all of her procedures done. All that is involved is: x-ray, ekg, sedated echo, and then her heart cath. I think I like this better, that way she is only sedated once instead of twice in two consecutive days. The heart cath will determine if little princess is ready for surgery. So, in other words, we will know for sure on surgery by Friday(26th) early evening. Changing the schedule also lets us have the privilege of taking Cole to the airport on Thursday. Some may know that last October we planned a trip to Disney for Cole's 5th birthday. Well, I was just a few weeks pregnant and didn't know about our heart baby yet. Since then, I hadn't changed the tickets in fear of jinxing it, but Cole is still going to go with the Winter's and he will still have an awesome birthday. We asked Cole if he still wanted to go to Disney even if mommy and daddy couldn't go. We said that Bob and Stephanie would take him and he replied, " Yeah, sure. They can watch me." Like it's no big deal! ha ha Thank God for the Winter family. You all have been so wonderful to us and we are grateful for everything. Cole will be in good hands all week and I'm sure he will be spoiled rotten!
Anyway, we were supposed to leave on the 25th, but this is the right decision and this will help Cole keep his mind off of his little sister. He loves her so much and is always worried about her. It is sooo cute! Anyway, that is what will be going on next week.
Please pray that I get through this week and pray that I stop loosing my hair! Yes, loosing my hair. It is coming out in clumps. I guess that is what stress does to you. But, if that is what it takes to still have my daughter, then so be it. I can buy a wig!
Thank you all for your support and still following this blog. We have so many wonderful friends and family. We are strengthened by it more than you know.
Heart hugs and love,
Suzie

Hemi-Fontan: A Reality

Well everyone.....here we go! Got a phone call today from U of M and we have a schedule for next week!!! We go for her "work-up" on the 24th, Heart cath on the 25th, and most likely surgery on the 26th. I swallowed pretty hard when I got that phone call but, I would rather have it sooner than later. This just means that she is doing so well with her weight gain that she needs to be fixed earlier. We get our packet from U of M probably on Wednesday and I will have more detailed information to pass along.
Heart Hugs!
Suzie

Hemi-Fontan

Her heart after the Norwood:

This will be her heart after the hemi-fontan:The hemi-Fontan procedure is the second of three operations for children with hypoplastic left heart syndrome. It is done when the child is between four and six months of age. A heart catheterization is done before surgery to make sure that it is safe to proceed with surgery.
Why is the hemi-Fontan procedure done?
The goal of the second stage is to reduce the work of the right ventricle. After this stage, the right heart will only have to pump blood to the body because the work of pumping blood to the lungs is taken away.
How is the hemi-Fontan procedure done?
The large vein that brings blue blood back from the upper body called the superior vena cava is sewn into the blood vessel that takes blood to the lungs. Blood coming back from the upper body now flows directly to the lungs without going through the heart (1).
The Blalock-Taussig (BT) shunt (2) placed during the Norwood operation is removed. A patch is placed over the top part of the heart's right upper chamber (3). This prevents blood from the upper body from entering the heart and blood from the lower body from entering the lungs. It also maintains a connection that is used for the final stage of the repair and greatly simplifies the last operation.
Why not perform the hemi-Fontan right away?
In newborn baby, the pressure in the blood vessels in the lungs is quite high. If the hemi-Fontan was done right after birth, blood coming back from the upper body would not be able to flow to the lungs because of the high pressure.
After the hemi-Fontan
Most children tolerate this surgery very well and are able to return home about a week after surgery. The child usually looks about as "blue" as before the surgery since some of the blood returning from the body still bypasses the lungs. Children usually go home on several medicines that often can be stopped six to twelve months later.
After this surgery, most children grow and develop normally. They are not more prone to infections than other children and can be involved in all age-appropriate activities. There are no activity restrictions for toddlers and no need to stop children from being too active. Children know when they have reached their limit and will stop and rest. In general, children can return to daycare two weeks after discharge from the hospital.

Thanks for letting me educate you today! :-)

Love,

Suzie

PS Go Blue!! However, they are not looking like a championship football team only 4 minutes into the game!!!! Michigan 0 Notre Dame 14 WHAT???!!!! Glue on the hands would be a good idea!

As promised....

Look at those cheeks!!

Meet Carlee and her mom, Amanda. We went to their benefit last Saturday. It was so good to see them again!
Lindsay and her biggest brother.

One of my very favorites of the boys. We went for icecream the night of Cruz's birthday. The other photo is Papa showing the boys how to feed those crazy ducks! We had so much fun with cousins Braeden and Camden. Come again soon!

Our Princess is 3 months old!!!

Hello all! Just wanted to share that Lindsay is celebrating her 3rd month birthday today. We couldn't be happier to have made it this far. We saw her cardiologist today and said that he was going to contact U of M to see if they would like him to do a heart cath here in Kalamazoo. The other option, and the way that U of M seems to do things, is that they do a heart cath the day before surgery so that we don't have to make several trips. However, Dr. Loker wants to find out if we need to do it sooner because of her heart function. It is diminishing a little, which is typical the closer we get to the next operation, and that was his concern but not one that means that we need to do surgery right away. So, I will be waiting by the phone to see what he found out from U of M. Hopefully he can get someone on the phone today. She has her next cardio appointment on the 26th and we will go from there. One step at a time. He increased some of her meds as well because of heart function but maily because she is little miss chunky monkey! She is now at 4ML of captipril, .5ml lasix, and .5ml digoxin. Hopefully this will help and the blue around her mouth will go away a little too. But, that might stay until after surgery.
She weighed in today at 11 pounds, 1 ounce!!! Have I mentioned that she has quite the chipmunk cheeks going?! I promise that I will have some new photos posted by the end of the day. Looks like my USB ports stopped working on me so I will just put all the photos on a disk and get them that way until I can get some spare time, yeah right!!, and get my computer fixed. Anyway, she is growing like a weed and I really wish that were weren't so excited about her getting bigger. But, she needs this next operation so we want her as hefty as possible. She is just a delightful little girl and smiles allot. Thank GOD she hasn't gotten sick. We are still crossing our fingers on that one.
Ok, so pray that the doctors make the right decision for Lindsay and looks like October is for sure for the hemi-fontan. Just not the exact date yet. The drum roll is still going on that one.
Oh, and I plan on, for those of you that are interested in knowing, posting what is involved in the next surgery and what reconstruction is going to be done. Quite interesting really.
Until next time......
Love, Suzie

note from mom

Hello to all.....I know I've been silent over the past month or so...(had a little going on) Just wanted to update all of you on the Dean home front.

Cole has mono, (yes, that's right MONO) JR has strep throat, Suzie has a cold...chicken soup has been delivered..All this and it's Suzie's 2nd week back at work. Oh my! To top it all off, we thought Aunt Marva had a heart attack...This is when my dear daughter had her meltdown....We just can't ever loose Aunt Marva!! She's the matriarch of the family! It turns out Aunt Marva is suffering from reflux that resulted in major chest pain. She was smart enough to call for help right away and is going to be just great. Well, the fact that the Dr. thought she was only about 60 really helped!!!! I think he thought he had the wrong room when he came in and saw her. We're so proud of her! I hope Suzie and I got her genes.

Bill and I have Cruz at our house, trying to keep him healthy. Of coarse, Miss Lindsay is with mom, dad and Cole. Cole knows his limitations with her and is being a great young man about it. It's so cute to see him walk around with his head tilted because of his swollen glands. Bless his heart.

Bill is on the mend and walking between 1 and 2 miles a day. Of course I go with him every chance I get. Anyway he's close to his 10% difference in loosing 10% of his body weight. I'm doing it with him and together we've lost 36 lbs. He isn't going to be re-evaluated until November, so until then he still can't drive. He spends a lot of time on the internet and doing small jobs around the house which makes him totally exhausted.

We're counting down 'til Miss Lindsay's next surgery. It's so sad that we're wanting her to grow into this surgery time instead of wanting her to remain at this tiny baby stage, but we all know it's for her own good. We all love her so!

Hope this catches you all up.

Heart Hugs

Linda

September....

Well, now it is September and Lindsay is doing really well and gaining weight as she should be. She is at 10 lbs. 7 ounces and starting to really smile and play like an almost 3 month old should. She is an absolute angel and cannot even fathom our life without her in it. Our choices for her have changed our life, but I wouldn't change anything. Yes, there is lots of crying worrying about what is to come and what could happen to her, but in the time that we have had her home to enjoy and love, we have especially learned that life is WAY too short to worry about that. We take one day at a time and some days, one minute at a time, but we cherish it all and try to implant in our brain everything little thing that she does. Our special heart baby she will be forever.
Lindsay's sees her cardiologist on the 11th and we suspect that we talk about her surgery in October. Don't know if we try to schedule that then or what but I'm sure that he will do an echo on her and make that decision. He told us 2 weeks ago that he thought it would be in October sometime. So, that is coming very soon and the nerves are starting already. :-)
We had an eventful week with special visitors from Pensacola. Uncle Dan and cousins Braeden and Camden came to visit. We were so excited to see them and spend some time with them even though it was just for the weekend. We had a wonderful time with everyone at the lake. It couldn't have been a better holiday weekend.
I am back to work now but only three days a week. Feels good to go to the office believe it or not! Wouldn't have to if we could just win the Lotto!!! Wishful thinking never hurt anyone.
I would have posted some pretty good new photos that I have of Lindsay but all of a sudden I'm not able to get my pictures downloaded. I will as soon as I get that figured out. Still has me stumped.
Would also like to take this opportunity to have everyone pray for little Bela. She has undergone her second surgery and is doing well but could still use some extra prayers. She is a beautiful little girl that has the same heart defect as Lindsay. I have her linked over to the left for you to view.
I hope this updated everyone as good as possible and look for new photos soon! Just wait to see her cheeks now! ha ha
With Love,
Suzie