Monday, April 9, 2007

Today's Cardiology Appt

went well.  Eliana has continued to gain weight, though it has tapered off some.  She is up to 11 pounds and 7 ounces.  Her heart is still doing well.  We aren't going to change anything regarding her meds or feeding prior to her surgery.

Some of the questions that I asked were:

Do you know what time Eliana will have her surgery?

Usually babies go early in the morning.  We'd need to be here around 6am.  We won't know for sure until after the Friday morning meeting with the surgeons when they decide the details for the next week's surgeries.  There is always a possibility that we would get bumped and have to wait until later in the day.  That would be harder as she will have to go some period of time without eating before surgery and dragging it out even longer might make for a really fussy baby. 

Do we know who her surgeons will be?

Again, we'll know on Friday when we come in for Eliana's pre-op.  They will decide based on the procedures needing to be done if it will require more than one surgeon - in addition to the cardiac fellow that will be helping.

How long will she be sedated?

Typically at least 24 hours due to the pain from the surgery.  She will need to have some time of being awake before they will determine that she is doing well enough to be transferred to a room.

Dr C told me he had heard about my daughter raising money.  He was surprised when I told him she had currently raised more than $1700.  He wondered what she had been doing and I told him selling bracelets.  He asked what kind and I showed him one that I was wearing.  When he asked the cost, I told him $5-$10.  That is a lot of bracelets!  I shared that we were having a hard time keeping up with demand (a good problem!).  He suggested that we raise our price - though we aren't planning to do that at this time.

He asked where she was going to donate the money and I replied Duke - earmarked for babies needing cardiac repair.  He suggested that I look and see where there was a need while we were in the hospital so that if Rebecca wanted to she could donate money for something very specific such as a machine or equipment or other such things. 

Dr C asked me if she wanted to be famous.  I told him that she probably didn't as she is pretty shy - but that it was good for her to learn to speak out about what she is doing.  He thought we could certainly have some press about her donation once she has an amount she is wanting to give.

We talked some at dinner about her goals.  I suggested that she have one goal that she thought was a realistic goal and another one as one to strive for.  She thought that $2500 would be a realistic goal and $5000 one to shoot for.  (Of course earlier in the day she thought "a million" would be nice.  I informed her that she would need to start working on corporate donations to get up into that kind of amount.) 

I was also contacted by the "Little Mended Hearts" coordinator.  This is a group that meets monthly (met last week) as a support group.  She was a helpful gal that offered some good information to me.  One of the encouraging things she shared was that often T21 (Down syndrome) children typically do better with this surgery.  She also gave me the name and number of a local family who's child has had heart surgery if I wanted someone to talk with or ask questions.  She shared about the difficulty and cost of parking, things to bring with me and also told me that once Eliana was transferred to a room that we would want someone with her all the time.  She thought that 3-5 days was a typical time for babies to remain in ICU.  She is planning to gather some information for me and hopefully give it to me on Friday.

We really have gotten great care at Duke.  I am thankful to be so close to a great hospital.  Just last week I was having some doubts after someone posted about the "best hospitals" and how important is was to be at one of these.  I began to wonder if I had been remiss in not doing "research".  Doubts and fears that certainly weren't from God.  An unexpected and neat answer to prayer came in the form of a Duke neonatal nurse who came to our house to deliver a meal.  She is part of the service chain at our church and someone I've never met.  It was wonderful to talk with her and to be encouraged by her regarding the care at Duke.

I also wanted to share one other neat answer to a prayer that I didn't even ask!  God is so in the details and this was a sweet reminder of that to me.  I went to a consignment sale a couple of weeks ago.  I bought a lot of things for the children, but felt a little rushed as there was more to look at than I had time to look.  I was looking specifically for Eliana and was debating on a mobile and a play mat.  I decided to go with the mobile since she spends a lot of time in the crib with her feeding tube - and she loves it!  I began to regret not looking at the play mats though, but just put it out of my mind. 

About a week after the sale, I saw one of the gals (Beth) that runs the sale.  She mentioned that I could come by if I needed some clothes for Eliana as they usually had a lot in the small sizes that was donated.  I thanked her and did go by.  I found some adorable things for her and as I was leaving Beth held up a tightly wrapped item and asked if I needed it.  I didn't even know what it was, but she told me it was a playmat.  I said sure.  When I got home and unwrapped all of it -  I found an adorable, like new mat with toys!  It is just perfect even down to having a small pillow that she needs for support when she is on her stomach.  I hadn't asked for this, yet when I saw that it was what we needed I was so touched.  God knows my needs and wants.  This was a sweet demonstration of His love and care for me.  I love how He can use each of us to be His hands and His feet to a hurting world. 

We sent out our Christmas letter a couple of days ago and an announcement picture of Eliana (the one on my blog).  A little late, but we really wanted people to know and to have her sweet face to remind them to pray for her!  If anyone reading this wants one, I'd be happy to send it to you via email - just let me know.

More tomorrow as I'm able.  I've been working on a long piece with pictures and hope to have it ready to post soon.  I also want to thank Leanne and Abbey Morris for working on making my space here so pretty. 

Blessings to all of you!

One more week ...

until I hand my baby over for her surgery.  Time has creeped along at times and it's hard to believe that it's almost here.  We've been waiting on this day and yet I dread it too.  Everyone says it is much better on the other side of surgery.  I'm hoping for this.  I know that on this side - the fears are overwhelming at times.  This is going to be a busy week of preparation.

- Last regular appointment with her cardiologist.  I will update later today.

Thursday - Meeting with a child specialist to help prepare us for her pre-op and surgery.  I will hopefully get helpful information to bring home for the children as well as us.  The gal that I spoke with on the phone was super nice and I'm looking forward to  her help.

Friday - Pre-op.  We've been told to prepare for a long day.  Lots of tests.  Lots of information.  I've been told that it will be a hard day.  We'll also meet the surgeon(s) then so that we can ask questions.  I've been trying to make a list.

Through out the week I'm hoping to do a heart study/lapbook with the older children.  It's a pre-printed one that a friend gave me that shouldn't be too hard to pull off - we'll see.  We are also working as a family to help Rebecca with her bracelet sales.  I'm working on a letter with information to send to all that have asked on-line.  She will be selling bracelets at a conference at the end of next week and we want her to have plenty on hand to sell.

In between these things, I'm hoping to rest, spend time with my children and prepare for surgery.  We are to keep Eliana pretty isolated so we aren't planning on going anywhere to doing much other than dr appts.  I want to try to prepare emotionally, physically (packing) and spiritually.  If anyone has any insights, please share them.

I need to run as it's time to leave shortly for our appointment.