Monday, December 7, 2009

Rough Night (Darn it!)..

After a peaceful day yesterday, Madison's rough night began around 9:00. Don't get too worried.. her heart is doing just fine - it is beating perfectly and we love it! Her rough night was simply a result of having surgery and dealing symptoms from her old heart. (I'll explain symptoms of her old heart in a sec..)

For anyone who has had any type of surgery before, does gas bubbles make you instantly hurt again? They are horrible! I have had them before and they hurt so bad! Now my heart aches for her little belly. Surgeries just aren't any fun! Maddie's gas bubbles began as a result of her major pain medications wearing off and her organs waking up and working again. (this is normal, just not fun to go through..) She didn't sleep much last night as she tossed and turned and screamed as bubbles developed and passed through. So, what does a mom do for her baby during all of this? Not much.. I can't even hold her yet because her chest tubes and her atrial lines are still in. I just hold her little hands and head and tell her, I'm so sorry.

Other symptoms we are dealing with (from her old heart): It has been explained to Mark and I many, many times from many different docs that her little body was starving on the inside. (Starving meaning lack of oxgyen and lack of nutrients due to her heart not pumping well..) Her organs were protecting the most important organ (her heart) by restricting blood flow to the less important organs and extremities. Yet, while her little body was going through all of this on the inside, she showed very few symptoms on the outside. Heart Failure is extremely deceiving!

Anyway.. because her organs were in such distress, now we are dealing with them reacting and responding because they are actually getting the proper amount of blood flow. It's kind of like wearing a rubber band around your arm for a long time cuting off circulation; releasing that rubber band is a good thing, but everything hurts and reacts to finally being able to work properly. This mess is most likely causing some of her stomach pains as well. (Darn it!) So... to help her organs get a large amount of blood volume (oxygen and nutrients) fast, they have hooked her new heart to an external pacemaker. This will allow them to increase her heart rate, so it will pump that extra - needed volume to her organs.

Issue #?: Another issue that everyone around here is stirring about .. Maddie's old heart was 4x the size it should have been. (stay tuned for the post about her old heart.. I even have pictures..) Because her old heart was so big and her new heart is so small (normal size), there is a large empty space around her new heart. We want her body to recognize empty space; her organs and lungs need to spread out and enjoy life without have to be so squished. We are waiting patiently for that to happen. Meanwhile fluid is building up in that extra space. (Dang it!) This is not good. The heart doesn't pump well in water. If fluid continues to build up, Dr. AK will need to put a tube in to drain the fluid. This procedure is done in the OR. I don't want to worry anyone. There isn't a lot of fluid right now.. just something they are going to watch very closely.

Good news: Maddie does need a Picc Line, but she doesn't have heart issues anymore. This means she can be fully sedated and I'm a happy mom. (yeah for a good, healthy heart)

I'll update again later this afteroon. I'll also post about her old heart (with pictures..)
Again, thank you for your love, prayers, and support.


Ryan and Hilary said...

Dang it. Poor little thing. You are very good at explaining things. After Daxtons transplant we were home for a week and then he had to be readmitted because of fluid. He was in the picu for 3 days and the floor 3 days while the fluid drained. It was very frustrating but after spending a long time in the hospital waiting for a heart this was minor. It is so comforting to know that she is in the most capable and amazing hands. We will pray extra hard for her little body to feel better.

Claudia said...

So glad I found your blog! You are amazing and I can't wait to hear more! :)

The Simmons Family said...

Darn It is right. I'm so sorry. Nothing is worse than a Mom unable to scoop up her baby and hold them when they are in pain. My heart would ache when I could only rub Owen's head and he cried out. It's aweful.

Hang in there.

We are praying!!

Kaidence's Mommy said...

Darn! Well ups and downs will happen. I hope that she is feeling better soon.

Kaidence's heart was huge as well and had collapsed 1 1/2 lungs due to its size. However, when transplanted she took a heart of a 3 year old and came back with her chest closed. I think I do remeber maybe some issues with the lungs getting use to life without being smashed, but nothing major.

Hopefully tonight will be good and restful. Do you need anything? I can be up there in 15 minutes, just call me and let me know.

Emily Han said...

Mark and Michelle,
We're so sorry we can't be there to help you through this time but you're in our thoughts and prayers. You're certainly at the right hospital with the right people around you and you are doing such a terrific job. We love the updates and are praying for a speedy recovery for the whole family.
Emily and Jae Schroeder

Staci said...

Well, you know with these sweet little babies, nothing goes completely without bumps in the road. Her body has some big adjustments coming. I am glad she is still doing well.

Staci (angel Bridger's mom)

Al, Jenny, Avery and James said...

So sad about the bad night :( It will be nice when you get to hold her again. You explain things so well! I love reading your updates. Al is reading your blog too. He is amazed at how good Maddie looks. She is such a trooper!!

You are all still always in my thoughts and prayers. I still marvel at what a miracle this all is.

The Stewart's said...

Darn those bad moments, but it won't top the feeling of the new healthy heart that now beats in your sweet baby girl. I'm so happy for Madison and your family. I found your blog through Kaidence's. Alex had many ups and downs before we went home, mostly due to liquid around his lungs. He couldn't seem to get rid of it. Hopedully tonight is better for you both.

Heart hugs, Alex's mommy (HLHS/Transplant)

Amber said...

Darn it is right! Sorry she had such a rough night..I hope that today was a little better for her. Those gas bubbles after surgery are the worst and HURT! I hope her little body gets accustomed to her new, healthy heart soon. Thinking of you guys!

Summer said...

So sorry for Maddison and Mommy! It's sooooo tough when there's not much you can do for your sweet baby. We wil lpray for better recovery days and nights.

Love Mason's Mommy

Anonymous said...

Ask the doctor's about a Harris flush to get rid of the gas bubbles. It is a reverse enema that places water in the colon and is then allowed to flow back out carrying with it the gas bubbles. It works well on adults, but I'm not so sure about infants. They come with their own set of rules.

You can also lightly massage her belly in a clock wise circle to encourage movement of the gas bubbles out. Do this gently and only in clock wise direction.

Aunt Shelly

Kathy said...

So sad about the bad night and the pain for Madison and Mom and Dad. I sure am hoping you have a better day and things start to adjust soon.

Anne Klitgaard said...

I stumbled across your blog today......
I am loving reading about your journey. My sister and her husband lost their little guy the day after Thanksgiving (they are also 'heart friends', thats how I came across your blog). It is so wonderful to see a family who is blessed with an optomistic prognosis. Although our little man only lived for 44 days, it makes us feel so much better to see those who are prevailing. Truely touching. Thanks for sharing your story.