March 19, 2010

Good Day and Surgeon Follow-up

Alexa had a great follow-up with her surgeon. Dr. T.  He mentioned that not only did Alexa recover very well but she did so very fast. He also said that her heart is strong and sounds great! This of course was music to my ears!  For the first time in a while I felt a sense of releif.  I actually said aloud to myself that it was a good day! Joy has begun to set in and it feels great ~ I say welcome back!

Me and Lexi before we went to her appt with Dr. T

Lexi with her grandma (my mother-in-law)

So grateful she came from out of town to help us out during Alexa's surgery! 

Also wanted to send my well wishes to two of Alexa's heart buddies in the hospital as they are still there and I have been thinking and praying for them.  To Diego and his mommy Carmen.  Diego was actually born with same heart issues as Alexa and he had his BT Shunt the same day Alexa had her pacer surgery, he will also be needing a Rastelli down the road.  He is having some feeding issues and docs even mentioned a GTube, they have been in the hospital about 5 weeks now.  Also to Allie, who has endured so many many surgeries, and was recently on ECMO got off but needed a diaphgrahm surgery to try and get off the ventilator, please also keep her in your prayers.

March 9, 2010

Cardiology Update and Thoughts

Yesteryday, Monday, March 8th was Alexa's first cardiology appointment since her surgery.  She was pretty nervous about seeing people in scrubs again but my holding her helped releive some of her anxiety.  Dr. P was pretty sad she kept giving him dirty looks and asked when she would begin to love him, I said at least till her visible scars and bruises wore off. 

Doc said she looks great, saw the echo notes and said she had a great repair! We talked a bit about the pacemaker, how we would go about monitoring it.  They said I would be getting some equipment from Medtronics the maker of her pacer.  He checked it and it is also working great, battery life estimated at 3 years although he thinks it should last longer. 

I felt pretty reserved at this visit.  I am normally much more smiley and outgoing but I just feel like I'm waiting for the other shoe to drop.  I know I should not feel this way.  I am so happy, grateful and relieved surgery went well and it is over and we're home but I just can't relax yet.  I want to breathe easy again, I want to forget and just enjoy our lives again but it's hard to let go.  I know it has not even been a week yet since we've been home so I'm sure it will take more time.  I just barely got my mojo back to clean my house again yesterday as I was completely exhausted the first few days we got home and all I wanted to do was nap, although I didn't.  Sleep was still all I thought of while awake. 

I was also so very happy to go back to my meeting on Sunday (church).  I could relate to words written in Psalms 73:28 ~ "But as for me, the drawing near to God is good for me.  In the Sovereign Lord Jehovah I placed my refuge, To declare all of your works."  I just felt like I really needed to be close to God again be spiritually nourished so being back made my heart rejoice.  We also got a really warm welcome from all the friends.  Per doctors orders, I will not be taking Alexa out yet until a few more weeks, giving her sometime to recover and build her immune system back up.  But looking forward to the day we can all go out together as a family with no ... err few worries. 

Alexa is doing so good, her scar is healing nicely.  I can see how normal she looks to be people who just observe from afar.  Just like any other little precious toddler, walking, playing and talking up a storm but if you lift her shirt you can see the truth behind the veil, you can see the battle she faced for her life - there is no denying it.  It is real and she is my hero.

   Our warrior princess ~ still smiling! 

March 4, 2010

Home Sweet Home

Just wanted to let everyone know that we are HOME!  

We got home last night!  It felt wonderful to walk out of those hospital doors with our baby.  So glad to be off the roller coaster ride and on the other side of the 'great big canyon' we faced, as our cardiologist described it. 

So happy to be together again.  To see our kids.  So happy to sleep in our bed.  So happy to sleep uninterrupted.  Alexa is doing very well, just needs some pain control every now and then.

Will update more later, just wanted to share the great news and thank you from the bottom of our hearts for your support.

March 3, 2010

Maybe Home ~ Update 10

We are sitting in Alexa's room waiting to find out if she will be allowed to go home today.  They were a little concerned she seemed to desat a bit while asleep but I think it was a combination of a bad connection, her pulse ox pressing on my leg, being covered by a blanket and her having some phlem she did not cough out.  Other than that she seems to be doing well and in good spirits.  As I wrote this the nurses came in to remove her central line and her IV.  So she is not longer connected to anything yucky, just the sticker leads on her back and the pulse ox.  Her surgeon, Dr.  T came to take a peek at her early this morning and told her to get ready.  Everyone is pretty sure we will be going home but there is no official okay or discharge orders so we are in limbo.  Dr. T had another surgery today so we must wait till he is out for more info.  For now we will let Alexa keep playing and walking around.  We have one foot out the door, packed some stuff up yesterday night but I was still nervous about the PICU monster making a comeback to our room.  My hubby said he is gone now, so I hope so.  Sleeping at home tonight would be just a marvelous dream come true. 

March 2, 2010

Thanksgiving ~ Update 9

I am laying next to my peaceful sleeping Alexa.  The time 1:30 a.m.  This means she is 18 months today!  Her heart rate is 110, oxygen saturation 100%!  I can hear the shuffle of the nurses outside our door.  The bubbling water in the humidifer for her nasal canula. The room is dark, only lit by the color of the monitors tracking her vitals.  I am missing my other children.  Missing our home.  But yet, I am just so very thankful, so very humbled, so very over joyed and reflectful.  I cannot find words adequate to describe my appreciation to God for helping us through these trials.  It is amazing to me that my baby has endured now 3 heart surgeries in her short life.  It is amazing to me that she is doing so great! I just feel complete love in my heart for God, for caring for her, us, and the many caring doctors, nurses, family and friends he has surrounded us by.  I've seen lot's of suffering in the hospital. Seen many families come and go. Seen many happy endings and some sad.  I have cried for strangers babies and wondered how many tears both of sadness and joy have been shed within these walls.  All I know for sure is that God love and cares for all of us, we are his creation, his little children.  And I have faith that soon he will bring justice and make things right for all.  And so in honor of God, Jehovah God, I share the words below:

Isaiah 59:1 - "Look!  The hand of Jehovah has not become too short that it cannot save
nor his ear become to heavy that he cannot hear". 

Isaiah 41:9 - "Do not be afraid, for I am with you. 
Do not gaze about for I am your God.  I will fortify you.  I will really help you. 
I will really keep fast hold of you with my right hand of righteousness."

I believe.

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