Tuesday, April 17, 2012

When it rains it pours

I hate rainy days. Bad things always happen when it rains. My boys act up more when it's raining. I hate when the bottoms of my pants are wet when I take my shoes off.  The whole world just feels depressed. Me and rain... we don't get along.

Whenever a doctor has told us "We think you'll go home on _____ day" something always happens shortly after that shatters our hopes of ever leaving this place. I can't help but get my hopes up every time they say it. I just want to take my princess home with me so badly! As I put in my last post, they were going to move her to oral medication today. When I showed up at the hospital this morning I noticed she was still connected to her IV. Instantly I knew tomorrow wasn't our discharge day.

Throughout the night she was spending most of the time breathing 90-100 times a minute. They gave her an extra dose of her medication, but it didn't help much. Because of her problems while breathing they never took her off of the IV. They ordered an x-ray to see if her heart is still enlarged. If her heart is still enlarged they will add another medication to her mix. She has already maxed out the one she is currently on.
Getting her x-ray
The x-ray came back showing "slight" improvement. So her heart is still enlarged just not as much. Her doctors are adding the second medication twice a day.

I think I've said before that they don't want to operate on Emma until she is six months. However, at some point the risk of surgery is less than the symptoms she is having. How I understand it is there are 5 steps we will take to try to get her to that 6 month mark.
1. Put her on lasix. Done and done.
2. Up her dosage on the lasix. Check
3. Add another diuretic called diuril. The lasix is also a diuretic, but seeing as how we've maxed out the amount she is allowed to have, we have to add another into the mix. Which we are starting today.
4. Up the dosage of the second diuretic.
5. Add a feeding tube. It's so hard for her to eat while working so hard to breathe. We would still let her try and eat, once she gets tired then I would supplement the difference in what she needs through the tube.

Once she is unable to eat at all on her own, the surgery becomes the next step regardless of how old she is. So we are already on number 3 of 5, with 5 months left to go.

I can't help but feel very discouraged today along with the mountain of emotions I'm constantly feeling. Part of me just wants to have the surgery now so it's over with. I hate seeing her this way, but she is so tiny. I can't imagine someone doing open heart surgery on her. Then again I don't ever want to think about that happening ever. Regardless of when they do it I will never be ready for her to go through that. 

However, there are some positive points of the day. Emma has been oxygen free for over 24 hours!! She hasn't dipped below 80% oxygen once.
I love being able to see her beautiful face without anything blocking it, I'm sure Emma is more excited about it than I am.

Our second great thing of the days is I got a call from her geneticist. Our appointment has been moved from November 13 to May 23! It will be nice to see if they can give us more insight into Emma's disorder. I'm grateful for Emma's doctors that wrote letters on her behalf to help her get in earlier.

I know that trials make us stronger and we are blessed for them. Thankfully the Lord has been sprinkling us with blessings throughout this difficult time.


  1. all i can say is your poor thing! i know you probably hear that more often than not. and your poor sweet baby! open heart surgery is scary and traumatic and no one will ever be ready to see their child go through it. at 5 days, 5months or even 5 yrs. i know it has been done on babies just a couple weeks old. the one next to shaylee had it done right after birth. the surgeons are AMAZING! and i'm with you. why prolong the inevitable, and make your sweet little girl suffer more? i hope things get better and i hope she can go home soon and can make that 6 month mark. i am sending prayers your way!!

  2. Poor little emma! I don't know how you do it, with moving, your 3 cute boys, and everything! We are praying for you and our ward misses you!

    If you're interested in ever getting photos of that sweet girl, I would love to offer a session for you free. Emma is so cute and precious and it's always fun to have photos when they're so itty bitty.