Wednesday, March 5, 2014

Emergency Admission

I haven't posted on here in a long time...which is good.  It means Hope has been doing great and there has been no need to worry.  I have become pretty good about not worrying about her heart, kidneys, or her health in such a long time.  Today I got a swift kick in the butt about how serious her heart condition is and how quickly our perfect life can change.  Hope has been fighting a cold for a while now.  I took her in for a sinus infection and after 10 days of antibiotics, she took the last dose on Monday.  Tuesday morning she woke up pretty swollen in the face.  I didn't think too much about it...kind of blamed it on a possible peanut allergy because she has been eating a lot of peanut butter lately (and her weight is showing what a great job she is doing eating).  This morning she woke up and was swollen again.  I decided to call and get an appointment down at the Clinic to see if something else was happening.

Sadly, something else is happening.  Her heart function has decreased, her tricuspid valve is leaking, heart heart and lungs are enlarged, and her blood pressure is high.  All in all...she is in heart failure and I am scared to death.  I try to stay strong for her and my family, but today I totally broke down.  I fell apart in front of everyone and I felt a true loss of control.  I don't have any control over this situation or Hope's heart and that is something that has been so hard to admit and think about.

I am not sure how long she will be in the hospital, but they have her on Milrinone and they gave her a hefty dose of Lasix to get rid of the extra fluid.  She is totally miserable and keeps asking when we can go home.  I am heartbroken seeing her like this...totally unexpected and I was not prepared at all.  My princess is finally sleeping and I needed to purge my thoughts and feelings before I go totally crazy with worry.  This is her first emergency admission and the first time since March 8, 2010 that she will probably be here more than overnight.  March 8th is when she was admitted for her Glenn and she was home on the 14th.  6 days for open heart surgery and I am praying that she gets out of here before 6 days with this admission.

I will know more about the thoughts from all the doctors in the morning.  I am thinking that her being sick kicked her already sick heart into failure and that when she gets this ick out of her that her heart will be better too.  Dr. Prieto was not able to see her today...she had an emergency cath, so we saw Dr. Golden.  He said something similar and I hope we are correct.  Dr. Prieto stopped by this evening and she is kind of thinking it may be due to high blood pressure (hypertension) with a possible kidney issue as an underlying cause.  Medicine could help with this as well, so I will wait and see what happens in rounds in the morning.

I am hoping to keep this blog updated through her admission because it is a good release for me and I need that when I am here.

Please keep Hope in your thoughts and prayers.


  1. Dear Paula, you and Hope are in my prayers, I haven't been able to think of anything but her since I read your auto-reply this morning. Jeff gave me your blog address, and I just wanted to let you know that I'm thinking and praying for your whole family, and of course Hope...what a perfect name. Shelley Buck (call my cell if you want to talk anytime 202-494-2397)

  2. Paula, I'm thinking about you! I am kind of the same way as you - I don't worry too much day to day, but when something comes up unexpectedly it's a reminder of how serious of defects our babies were born with. I had a dream last night that we were faced with another surgery for Sofia - I think things with Hope and Weston have been on my mind. I pray she won't be there long and that she will bounce back soon. Stay strong, Mamma! It's hard to see the other side of these things when you're in the thick of things, so I hope you have some good support and if you need anything, lean on your heart family!

  3. Oh Paula... I've been thinking about you guys constantly and am sending thoughts and prayers that they figure out what's going on with Hope! <3 ((heart hugs)) mama!

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