Finally going home

Well...the cath didn't go exactly as planned. They were not able to get access to her veins and arteries through her groin. This means that they were only able to get pictures through the artery in her neck. Dr. Prieto assured us that it was no big deal and happens sometimes. It means that for her future caths they will know this and try to get access other places. Her is how we have spent the last few days:

Friday: Got to the hospital at 6:30 am. They tried to start IV fluids around 7:45 am and could not get an IV. I went back to the cath lab with Hope (only one parent is allowed in there). They put her under and then I had to leave. No updates until 11:00 am when I asked what was happening. I received the above news. After that we were hopeful that everything would be fine and it would only be a couple more hours. At 3 pm, Hope was in recovery. She was NOT happy! She was in a lot of pain and her sats were really low. Dr. Prieto was kind of worried about her sats and decided it was probably best if she stayed overnight for observation. We knew this was a possibility, so no big deal. Up to step-down we went...planning to come home on Saturday morning.

Saturday: Talk about bloating. We knew they were giving her extra fluid because of her kidneys, but she weighed 400 grams more than the day before. She doesn't gain that in a month, so we knew we had to spend the day trying to get the fluid off of her. The fluid was also affecting her sats...which means she was put on oxygen through a nose cannula. She hates that and I don't much like it either, but it was needed as her sats were running in the 50s...usually they are in the high 70s or low 80s. By 6 pm, we knew we were here for another night. Marilyn and John brought the boys up for dinner and they went home with dad...at least one of us got a good nights' sleep. I stayed with Hope and worked with the nurses to get her sats up while she was on room air. Around 8 pm, I pulled out the nose cannula and she was officially on her own. She did really well all night with her sats staying in the high 60s and low 70s. That was good enough to let her come home.

Sunday: We are almost officially discharged! Still waiting for daddy to get here to pick us up, but I am sure they will have the paperwork done by the time they get here.

We also have a date for the Glenn...March 8th. A week from tomorrow. I will write more about that later, but yeah...I am scared!

Tomorrow

Tomorrow is the day we take our sweet princess for her heart catheterization.  It is a huge day for us and emotionally draining.  We know it is necessary and that her next surgery is necessary as well.  It doesn't make it easier to know that we will be handing Hope over to doctors in the morning where she will be put to sleep and have to be intubated.  We have had her home with us for so long and she is such a 'normal' 5 month old baby.  I found the following poem from Stephanie Husted and it really hits home for us today!

Waiting...Hoping...Somehow Coping 

Do I really have to do this?

Why can't I just pretend

That she is just a healthy child

No broken heart to mend.

Why must I watch her closely?

And wonder everyday

If God's plan is a life with us

If God's plans let her stay.

A perfect plan...I know this
She's loved...I know that too
Yet, still I wish I could prevent
All that she must go through.

It's drawing ever closer

That all consuming date

And there is nothing I can do

But love her as we wait.

We'll soon be in that "waiting room"

It just does not seem real

I cry, I vent, I hope, I love

I'm not sure what to feel.

I'm scared, but I am thankful

for all of you who pray

I trust that God will hear your prayers

On our daughter's surgery day.

So I await her future

As I have from the start

With grace along this journey

And hope within my heart.

Change of Plans

So, we were all set to go tomorrow for Hope's heart catheterization. We had the bags ready, no sleep, the boys were taken care of, and we were as prepared as possible. Then we got a call from Dr. Prieto's secretary. Travis called and said that Dr. Prieto had an emergency come up and has a catheterization on another little baby tomorrow and it is an emergency situation. I guess it is kind of good that Hope is not considered an emergency, but I was kind of hoping to get it done and over with. Now, I will have to spend another nerve-racked day tomorrow thinking about the catheterization. She will have to have IV fluids because of her kidney problems and I am not looking forward to that either. I am actually not looking forward to any of it. So, I ask that you keep us in your prayers on Friday...extra prayers if possible. I would also like some additional prayers that Hope does good enough that she can come home Friday night, rather than us having to spend the night in the hospital. Weekends are never good at the hospital and I am sure it will take forever to get discharged on a Saturday...it takes long enough during the week.

I will update on Friday to let everyone know how Hope is doing.

Thank you for checking in on us and keeping us in your thoughts and prayers.