Thursday, October 1, 2009

Still Swollen

Hope is still swollen today, but the nurse said that is very normal.  They are draining just about every part of her body.  Dr. Kwan spent a lot of time talking with us this morning.  He is the Nephralogist at the Clinic.  When Hope was in surgery they put in a peritoneal catheter just in case she develops problems with her kidneys.  Her kidneys should be measuring 4 centimeters and right now her left kidney is measuring 3.5 and her right is around 2.5 centimeters.  We knew they were small, but we thank God every day that she has two kidneys.  All through my pregnancy they searched for a right kidney and never saw one.  I believe that everyone's prayers provided Hope with her right kidney.  God granted us that miracle and we thank Him every day!

Hope's urine production was pretty low this morning, but her lab work seemed to be fine.  They gave her some Lasix and that seemed to increase her urine production.  I think we spent most of the day discussing pee with everyone.  I don't recall any other time in my entire life that I have talked about pee so much.  We know how important it is that her kidneys start working better than they are.  If they don't, they may have to start her on peritoneal dialysis to clean the bad stuff out of her.  The doctors indicated that many heart babies have problems with their kidneys after surgery, so even though her kidneys are really isn't that unusual for her to have kidney problems.

They are working on dropping the oxygen level every few hours.  By the time we left, they had her down to 42%, which the respiratory nurse said was very good.  She is getting sewn up tomorrow, so they may have to adjust it after that is done, but the nurse said she progressed really well today.  They will eventually drop her levels to 21% (that is room air) and then they will be able to take the breathing tube out (extubate). 

They did an ultrasound on her abdomen today because her right side is a little more swollen than the left side.  The only thing that it showed is that there is some fluid behind her liver, but that didn't concern anyone too much.  I guess fluid gets just about anywhere when they do open heart surgery.

I talked to the nurse a little while ago and she told me that Hope's output is now negative...this is good news.  It means that she is getting rid of more fluids than she is taking in.  That is the first time all day and we are really proud of our little girl. 

We want to thank everyone again for the thoughts and prayers.  God hears them and answers them all the time.  We have seen how well he answers prayers and I hope everyone else has seen it as well.


  1. My nephew has HLHS (Joshua Smith) and I remember when he was recovering from his first open heart surgery 2 years ago. It was a very difficult time but I loved being able to sit next to him and talk to him and hold his little swollen hand. I felt like maybe in some small way it brought him a little bit of normalcy and peace. I wish you and your darling little Hope the best during this trying time. She is in my prayers.

  2. Ah...pee...yes, you will have countless coversations about pee over the next few days. I am glad the Lasix is working and that her kidneys are functioning!! Praying praying praying! She looks good, really. Such a little trooper!

  3. wow, she is swollen. but i'm soooo happy that she is alive and doing well!!! i'm sooo proud of her. she's such a little fighter!!! love her!!she is a miricle. love, geraleia

  4. Braeden was very swollen after his Norwood too. It was scary, and even though I had an idea of what to expect, I was a little shocked at first.
    I did not realize that Hope has small kidney's, so does Braeden! They were not certain if he even had a left kidney until he was born ,and they could do a renal scan. Both of his kidney's are smaller than they should be, and one is located in his pelvic area, but he still managed to come through his surgeries quite well. We continue to lift your family in our prayers as Hope continues on the road to recovery.

    ~Stephanie and Braeden

  5. Thanks for the update, Paula. I found that The swelling was hard to watch. When Andre came back from his surgery, it was hard to tell it was him because he was sooo swollen. The nurses and doctors in the ICU work so hard in keeping an eye on that and giving parents some ease of mind. I'm glad that she's peeing a little too. Yay! I know a parent whose little boy who was born with one kidney, had his surgery, and he's thriving into a very healthy boy. Overall, Hope is looking very good! Praise God for His miracles. I'm praying for continuing good news for you guys.

  6. wow, Hope is a little rockstar! you go girl! I know you followed my blog, and I know it scared you a little, but Hope is doing so much better than my little girlie did. I'm so proud of her and you for staying tough through all of this. God is good and He is granting you much deserved peace.

  7. Hope is truly a little miracle!!! God bless her. I hope you are trying to get some much needed rest because I know all this has taken so much out of you. Take care, sending BIG hugs to you and baby Hope.