Packing and preparing

Well, I'm not actually doing either yet - though I'm thinking on it and starting to make a list.  I hate packing - even when it's for something fun.  Packing for this seems ... I don't know ... but it's definitely not something "fun".    It's like something I don't really want to think about.  What will I need while I'm in the hospital with my sweet baby?  I didn't even pack for her birth!  I usually pack while I'm in labor (yes, I always put it off until the last moment).  Eliana's labor started with me being sick - very, very sick!  I was hospitalized for severe dehydration which had caused contractions.  Kind of like the start of my pregnancy.     I can grin about it now.

My heart jumps each time I look at my blog and it's past midnight.  The ticker counter is one of the first things I see - after my beautiful baby's smiling face.  When the count  has gone day another day it always startles me.  Did you notice what it says now?  1 day until open heart surgery.  One day.  We have been counting towards this day for awhile and now it is almost here.  I'm not sure I'm ready for this.  I'm not really sure that I ever would be though.  How do you prepare for something like this?  Pray and pray and pray some more.

Speaking of prayer, we were blessed to have 3 elders from our church come to pray with us this morning.  They annointed and prayed for Eliana, her surgery, our family and more.  I am thankful that these dear friends were willing to do this for us. 

I know that God hears our prayers, though I do confess that I had many times early in this journey of feeling like my prayers were being ignored (I knew that they weren't) or that "NO" was the answer.  It hurt to have several very specific prayers answered in ways opposite of what I'd prayed for.  I know that there is no guarantee that I'll get what I want when I pray.  I know that God knows better than I do.  I also know that sin wages war on us each and every day.  It helps us long for a new  home where there is no sickness or sadness or death.

I've had so many people tell me that they are praying for us.  So many!  Churches, prayer chains, Bible studies, and friends all over the country and world even.  People posting requests on their blogs - friends and even strangers.  (If you have something posted about Eliana on your blog, I would love to know that!)   Many of my sweet FIAR sisters are praying for us and many have signed up on a list so that we have prayer coverage around the clock.  What a blessing that is to me that people would care enough to pray for us!  It brings me to tears every time.  (Yes, I'm in tears a lot these days.  Some sad tears and often tears of happiness too.)     Thank you - all of you!

Just last night as we were talking with our children, Joshua seemed surprised when I said something about Eliana's heart being fixed.  He asked if she was going to have her heart fixed.  I said "yes".  (Haven't we been talking about this?  Maybe it's our recent study of the heart that made it seem more real to him?)  Then he asked if they were going to have to cut her open.  I again responded "yes".  Then with a quavering voice and tears in his eyes he asked "Is she going to die?"  With tears in my own eyes I told him that the surgery was to help her so that she could live.  I don't want to be dishonest with him as there is always risk with surgery, but I also don't want to plant fears there either.  I know he isn't ready to hear the details of what she'll be going through.  Maybe after it's all over and she is safely home.  Please pray for his tender heart - and my other children's hearts too as I know it will be hard for each of them in different ways. 

We spent most of the day at home today.  We had plans to be out, but circumstances changed and we felt it best to stay here.  We are hoping to stay healthy.  We want to be well going into Eliana's surgery.  A calm day at home was a nice blessing. 

I still need to pack.  I don't know if I'll be staying while Eliana is in ICU.  Some people have said to go home and rest as the nurse to patient ratio is really high - and Eliana will be heavily sedated at first.  On the other hand it just seems wrong somehow to leave my baby.  How can I just leave her there?  It's not that I don't trust her care, I just don't want her to be alone.  Is it just thinking that I'll be a "bad mom" if I leave her there?  I know that once she is transferred to a room that I'll be with her around the clock.  I'm just not sure about the first nights.  I guess that hampers my knowing how to pack.  I really don't know what I'm doing.  And that is like so much of this journey so far - I really don't know what I'm doing much of the time. 

I'm praying and doing my best.  I'm trying to lean on God and learn from all of this.  I have wondered what I'm supposed to be learning and had many conversations with God about all that I've gone through.  I've wondered if walking through this time of fire would change me.  I have told God that it would be a real shame to have gone through this and remain unchanged.  I want Him to do a work in me!  I want Him to show in me.  I want Him to be able to use me. 

Please keep praying for our family.  I am thankful for your prayers, your notes and your comments of encouragment.  Even though I'm not able to respond to each of you, know that your words, your efforts and your love have touched my heart deeply!

With love,

Leslie

Pre-Op Today

Thank you precious friends for your prayers!  Thank you also for your notes here and also emails.  I do appreciate hearing from you - even though I'm often not able to respond.  Please know that I'm reading and thankful!

Eliana's pre-op went well today.  I could tell prayers were answered as things went very smoothly and I was amazingly calm.  We were able to read some scripture on the ride over to the hospital.  None of those "moments" (tears/worry/panic) that I've been having really happened today.  Here is a look at our day.

• 9:00am   Leave home


• 9:30am   Arrive and check in.  Start Eliana's feeding tube.  Get stats - weight,  height, bp and temp.  She has continued to gain weight and is up to 11 lb 9.6 ounces.


• 10:15am - Labwork.  Has an blood draw from her arm.  She is NOT happy about this at all and cries for a long time (for her) afterwards.  Not sure what all they checked, but do know that her thyroid function came back as normal.  Yippee!


• 10:20am - EKG - She is still crying and still trying to finish up her feed.  She will not be consoled or distracted and it's hard to get a good reading.  She has 12 leads attached to her body - most on her chest  - and some fall off at various times.  We do finally get a read and can leave.


• 10:45am - X-ray of her chest.  She is calm now and doesn't mind this at all!  She gets one x-ray from the front and one laying on her side.  The tech tells us afterward that she has a lot of air in her stomach and needs a burp.  We asked how she knew that and she replied that she could see it on the x-ray.  (We knew it was from crying for so long - while feeding!)  She asked if we would like to look at it and we said yes.  She showed us the various images and we could even see her feeding tube going through her esophagus and into the stomach.  Kind of neat!


• 11:20am - Meet with two nurse practioners who start to take a medical history and ask a wide variety of questions of Eliana.  They also do a physical exam of her.  She looks good!  During this time she asks if we have a preference for Eliana's surgeon.  Roger tells her Dr. Jaggers.  He will be doing Eliana's surgery.  (Please pray for him!)


• In the midst of meeting with the Nurse practioners, we are able to meet with Dr. Jaggers.  He talks about the risks with us.  I took notes so that I could remember later.  One of my friends asked if it was like drinking from a firehose?  Probably a fitting description.  He gave us some details about Eliana's surgery and repair.  I'll talk more about that in a bit.  After hearing the risks explained, we had to sign a consent form for the surgery.
  


• 12:45pm  - Walk to pediatric echo lab.  Get ready there.  Eliana is asleep at this point.  The Dr agrees to do the echo without sedation if she is asleep.  Shortly afterwards, she wakes up and we know that she will need to be sedated.  See Eliana's cardiologist and talk briefly with him.
  


• 1:30pm - She is given chloryll hydrate (sp) via her NG tube.  Nice option since everyone says that it tastes bad and it was a pretty large dose!  It takes about 15 minutes for this to work.  She fights it for awhile and is very fussy.  I held her and bounced her until she was "out".


• 1:50pm  After she is out, she is hooked up to an EKG monitor and oxygen monitor.  Her O2 saturation numbers are low which I mention to the nurse.  She is typically in the mid to high 90s and today was in the low 80s even going as low as 75.  Since this was not typical for her, the nurse gave her oxygen.  She explained that the sedation sometimes makes it difficult to breathe deeply.  The oxygen helps right away and her numbers stay high during the procedure.


• 2:00pm The echo procedure is done in a darkened room.  It took about 1 hour.  It was interesting to see the heart and the valves moving.  We were also able to see the holes in her heart and the flow of blood throgh the holes. 
  


• 3:00pm -  I talk to the nurse about the red irritated places under Eliana's adhesive.  I didn't want to remove te adhesive (or replace the tube) but it seemed to be the best choice for Eliana.  I would love for it to have time to heal before it is covered again during surgery.  I remove the tube and insert a new one whlle she is still sedated!  I like doing it that way.  (#14 for me)  Then we tried to wake up Eliana to see if she is coming come out of sedation alright.  Took a cold washcloth on her face to finally see her eyes.  She is fussy - hungry since she missed her noon feeding.  She takes about an ounce via bottle and then falls asleep again.

We're done now and can go home!  We arrive home to find lots of happy people at our house.  Three friends and their children are there - beading bracelets, playing and doing science lab.  I'm thankful for the help of friends and the fun day my children had with them!

More details about surgery!

Eliana is scheduled to arrive at 6:15 am on Monday morning for surgery.  She is the first one scheduled for that day.  We are not to feed her after her midnight feeding.  Dr Jaggers thought that the surgery would take about 3 hours.  Since her VSD (the hole between the ventricles - the two lower chambers of the heart) is large it will require a patch about the size of a dime.  (Remember her heart is just the size of her tiny fist!)  The ASD is not as large and will be able to be fixed via suture.

He expected her ICU stay to be 1-2 days and the hospital stay to be 5-7 days.  Much better sounding than 2 weeks!  Of course all of this is dependant on how Eliana responds.

We are planning to take our laptop to the hospital and will update as we can.  I'll include some information about risks that is difficult to read.  For those that like to pray specifically and who can handle some of the details, I'll include them after my closing. 

Thank you for your prayers for our precious little girl!

With love,
Leslie

****WARNING:  Some of the following information is difficult.

Dr Jaggers told us that the success rate of this surgery is 98%.  Sounds great - only I know that someone's babies are the 2%.  I need not dwell on that! 

She will have her sternum cut through (broken) in order to get to the heart.  She will be put on a heart/lung bypass machine for a little over an hour.  (In my head it makes sense that her heart will need to be stopped, but it's hard to hear that.)

There are obviously risks.  Due to the size of her VSD and the location, there may be valve leakage after having to cut part of the valve.  Being on the heart/lung machine causes neurological problems ( i.e. stroke) in 1-2%.  There could be an abnormal heart rhthym resulting from stitches close to a pathway (don't remember the details here) which would result in the need for a pacemaker.

She may lose some of her skills after surgery and need to relearn them.  Feeding will be a big one for Eliana.  We expect to go home with the feeding tube and hopefully wean from it before too much longer.  I am especially hoping that she will retain her smile.  I just love her full face smiles!  She brightens up a room with her beautiful smile.

Late and I need to go to sleep.  I'm completely wiped out!

Another day closer ...

Hmmm ... where to start with today.  It has been a busy one for sure. 

I had a meeting at the hospital with a Child Life Specialist.  She talked with me about  what would be happening with Eliana during her pre-op and surgery.  She took us around the hospital to see the various room, gave me a lot of hand-out information and answered questions.  It was all helpful and good - but also hard.  A friend went with me and took notes.  It was helpful to have her do that for me so I could focus on listening and on Eliana. 

When I think of what is going to happen in the abstract, it isn't so difficult.  When I think about what is going to be happening to Eliana, my baby girl, then it can be hard!  It catches me by surprise sometimes too.  I'll be doing fine and then it will hit me.  It could be a comment or a thought.  Today when we were in the waiting area for surgery, she told me about the timeline of surgery and how someone would come out to say "Surgery has begun".   It hit me then and I just started to tear up.  Seeing all of the anxious families there waiting ... and knowing it would be us soon.   All the waiting and waiting ... and then it will happen. 

Tomorrow will be a busy day for us.  We leave early in the morning to go to Duke.  It is Eliana's pre-op day.  We expect to do the following things tomorrow

• Sedated echocardiagram


• EKG


• Chest X-ray


• Blood work


• Physical exam


• Meet the surgeon(s)


• See our cardiologist

A lot of testing for our little girl.  Blood work has been difficult in the past.  I know it hurts as they have to squeeze and squeeze to get the blood out until it leaves a bruise.  She hasn't been sedated before so this will be a new experience for us too.  Please pray that the tests would go smoothly, not be too painful for Eliana and that the doctors would get the information that they need.

We will be finding out who her surgeon is tomorrow (there are two at Duke) as well as the time of her surgery.  We will be meeting with the surgeon unless there is some unforeseen emergency.  I am hoping that this won't happen so that we'll have the chance to talk and ask questions.  I think we'll also be signing some consent forms.  I've been warned that this is difficult as they have to discuss all of the potential risks of surgery.  I've also been told that the form is standard and not specific to Eliana.  Even knowing that, it will be hard to listen to mortality statistics.  I keep reminding myself to trust God in all of this!  He loves my daughter more than I do. 

As you can tell, it is going to be a long day.  We'll be taking Eliana's feeding  pole/bag/equipment with us.  I should probably go pack all that I can tonight.  Please pray for this appointment tomorrow.  We'll have a lot more information about surgery to share after this day.

*******
I wanted to post an update on Wholehearted bracelet sales.  This has really turned into a project for the whole family!  We have been busy beading and working together.  Christopher has given many hours and Joshua and Isaiah have just begun helping out.  Roger also helps out in the evenings.  We have needed all the hands we could get to keep up with the demand.  It's a great problem to have.

We are also receiving much support from friends too - from helping to bead bracelets to buying bead supplies.  We are thankful to all of them for their contributions for it wouldn't be possible without them!

Rebecca went in to work with her Daddy again and had great sales!  She has also received several donations this week.  In addition to friends, she received a sweet note from a stranger that had been given one of Rebecca's bracelets as a gift.  When she heard the story behind the bracelets she wanted to support Rebecca's efforts. 

Tonight we were counting up her money/totals to see how much she has raised.  As we were doing this, the children were all coming in and out.   Joshua walked out and then came back with a $10 bill.  He said that he wanted to make a donation too.    Is that not the sweetest thing?!  That is a lot of money for a 7-year old!  What a precious heart.  He has often commented recently on Rebecca and her heart for others.  I think he has one too!

Total money raised thus far ...      $2174.00

It's late and I'm going to try to go to bed soon.  If you haven't been here in the last 24 hours, check out the two entries prior to this for some photos and a "button" you can add to your blog if you want to.

Thank you for your prayers, encouragment and support!  I am richly blessed!

With love,
Leslie

Eyes of a Child

I've been pondering this blog entry for quite some time.  I'm unsure how much of my random thoughts - both positive and not so positive to include.  For example, did you know that over 90% of children with Down Syndrome are aborted?  Never even given a chance at life.  That is so very sad to me.  Yes, this is a hard road, but so is being a parent.  We don't know what lies ahead with any of our children and yet we love them and would do anything for them.  I've never thought so much about how others view us as I have recently.  It's a new perspective to me on how things are seen.

I've heard it said that the eyes are the window to the soul.  Pondering on this reminds me of the words to a song ... "Open the eyes of my heart Lord, open the eyes of my heart.  I want to see you."  What are your eyes seeing?  What do others see in your eyes?  I hope my eyes show love, acceptance and a faith in our Father

When I first saw my daughter's eyes ... I knew.  I had not had prenatal testing done and it was quite a surprise to me at birth.  Initially it was this physical feature that I noticed most and had the hardest time with seeing it as different from my other children.  It was a reminder to me of things to come or rather things that might come to pass or things that I feared.  When I shared this with a friend, she told me that her daughter has said that she loved Eliana's eyes as they were such a beautiful shape.  This brought tears to my eyes and a knowledge to my heart that God is so in the details of my life that He comforts me with a child bringing the very message that my heart needed to hear. 

I've learned a lot since Eliana arrived.  Some days it seems like a short while ago that I was pregnant and life was good and happy and "normal".  Other times, it seems a lifetime ago that I wasn't crying about so many different things.   This has been so very different from the newborn time I've had with my others - a time that I LOVE.  This time has been hard.  Yet, she needs just what the others did - lots of love, lots of holding, lots of time to get to know us.  It's been the same in some ways too.  I LOVE my little girl so very much.  I love holding her, examining her tiny little fingers and toes and the thrill of having her smile at me is the best!

So many comments have been made since Eliana arrived.  I've received tremendous support and love from so many people.  So many that have reached out (and continue to do so) in love to me that I can't help but feel overwhelmed in a very good way.  Other comments have left their marks in other ways.  Very sad ways that bring tears of sorrow or anger.  Most of these are spoken from a lack of understanding and I try to remember that so that I don't hold on to the hurt.  I've never appreciated so intensely the power of words until the last couple of months.  It has been hard to be the one to have to extend grace over and over when people say things that just hurt.  I know that this is right, but it still difficult.

I sometimes wonder how Eliana will be viewed.  Will people see her and the gifts she has been given or a syndrome and the things she lacks?  I know some will see the problems only.  I've already had comments and questions that cut to the core.  After a particularly difficult conversation, I was talking with God about how very sad this made me and was blessed the next day with an email from a friend. 

This is what she wrote.  Yesterday during praise singing at church, we were singing "Shout to the Lord."

I had been having one of those "I have children and we are late to church again" mornings, and was closing my eyes during the song trying to focus.

When we sang the part about "the wonders of your mighty love," that sweet picture of Eliana that you posted flashed into my mind.  It was a sudden and strong image.

I continued to think of her, and pray for y'all as we sang, "I sing for joy at the work of your hands."

I just wanted to share with you that you were brought to my mind and my prayer yesterday, and I was singing for joy as I thought of the "wonder of God's mighty love" whom you are blessed to cuddle.  Thanks Robin! 

I do know how Eliana is viewed by her family and friends.  She is a blessed little girl to have so many people that love her and are praying for her.  I haven't shared much about my younger children and their reaction to Eliana.  They are just smitten with her.  It is so sweet to see them with her - loving her for who she is - not wishing she were different in any way.  What is it that their eyes see?  A precious little baby.  A sister.  Someone to love.

My 2yo, Daniel, loves to touch on her.  He thinks pumps (feeding and breastfeeding) are a normal part of having an infant.   It wasn't that long ago that he was just a baby.  Here are some of his recent comments.

"Eliana is cute!"

"She has eye."  (Said while pointing and I agree.)  "She has ear."  (Same response from me.)  " Why she have tube?"  (Hmmm ... maybe he does know it's different.)

Daniel is a delightfully funny and loving little fellow.  He LOVES to laugh!  Here's a photo of him that ought to give you a laugh.
Looking like the younger  photos of his little sister! 

Isaiah (5) also loves Eliana.  He always greets her when he sees her or me walking in a room with her.  Like Daniel, he seems to have accepting pumps as a normal part of life.  No big deal.  He and Daniel both ask to hold her and love being with her.

"I love Eliana!"  An unsolicited and emphatic statement.  Wow, does this melt your heart!



Joshua (7) loves to hold Eliana, look at her and love on her.

"Do you think she is more beautiful or cute?"  This is asked of anyone that will answer.

"She is the cutest baby girl I have ever seen!"

Daniel is on the left and Joshua on the right.

I love seeing my boys line up at her crib to look at her or talk to her.  I often come in to find one of them with her.  Sometimes all 3 of them are in a row just looking at her.  It's really cute!

Rebecca (11) has recently been singing songs about Eliana.  It's sweet to hear her words of love and acceptance.

"If you don't get to know her, it is your loss."

"I love you.  You are my sister."



Christopher (14) often comes in and scoops her up from the crib whether she is awake or not.  He likes holding her, talking with her and loving on her. 

"I love her big beautiful eyes."

My friend Catherine with  Christopher.

I was recently sent a link to a photo montage that really touched my heart.  The pictures are beautiful and so is the song that goes with it.  Make sure you turn up the volume so that you can hear the words.

http://www.giftsds.segullah.org/photo_montage.htm

Eliana is a gift from God to us!  I know that she will be used mightily of God in so many ways - she already has.

One of my friends shared these thoughts about Eliana.  (Thank you Ronette!)

Eliana is perfect! Look at what she has done for the Lord in her 3 1/2 months! She has driven Christians to their knees in prayer. She has drawn those weak in faith closer to the Lord. She has awakened such compassion in her older sister that others are going to benefit greatly. She has served the Lord more mightily in her short little life than many do in years and years! You are so blessed to have such a one in your family.

How can you look at this precious face (at the top of the blog) and see anything but love?  She is not a mistake, but is a gift.  A child made in the very image of God.  A child to be loved and treasured.  Our beautiful little girl.

Praying For Eliana

Leanne here, I have hijacked Leslie's blog for a moment to share the following. 

If you'd like to add the photo-link above to your blog, use this code.

Greater than sign a href= http://homeschoolblogger.com/leslienelsen Less than sign Greater than sign img src= "http://i173.photobucket.com/albums/w70/LeslieNelsen/Eliana.jpg" /> </a>

Many thanks to Sheri from Shades of Pink for making the photo Link

Love Leanne Morris.

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!
Leslie

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.

Monday - 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.

Happenings around here

Hmmm ... sometimes I wish I had a "catchy" title for each entry.  I often just want to put "here's an update" as that is often what it is.  LOL  I don't suppose anyone would really mind if I'm not creative.  I just don't want my writing to be boring.  I know that I've shared that I've never felt writing was a strength of mine, though I'm learning a lot through using this blog to share my thoughts and feelings.  It's been a great outlet for me - and a wonderful way to share information with a lot of people.  I continue to find that my days have few hours - or so it often seems - and way too much to do.  I do find that I have a lot more time now that I'm not pumping around the clock which is a nice benefit.  I'm not over being sad about that though.  Giving that up was a difficult choice - one that I'm hoping to one day look back on without regrets.  I can't say that I'm there now.  I'm starting to tear up just thinking about it.  Let me stop rambling about that and move on to happier topics!

Yesterday, Tuesday, we had a visit with Eliana's pediatrician.  Eliana is doing well.  She is stable and has continued to gain weight!  She is up to 11 pounds and 4 ounces.  She is even getting some "rolls" - you know the kind that cause the lines around the wrist and on the arms and legs?  I love cute little baby pudge!  We don't need to change her meds either.  She is working on holding up her head.  I love the way Dr L appreciates all of her milestones and achievments no matter how small they might seem (as they aren't small for Eliana).

We haven't seen Dr L in a month (she was out of town during our last visit) and Rebecca wanted to deliver a bracelet Dr L had ordered so she went with me.  She had requested "blue" so Rebecca brought in about 10 blue bracelets so that she could pick which one she liked.  Well, after seeing all of the bracelets, Dr. L invited the other nurses and doctors to come in.  She told them about what Rebecca was doing and subsquently, Rebecca sold 10 bracelets and received a couple of donations. 

We hadn't expected to sell so many bracelets since Rebecca had an engagement to sell bracelets on Wed!  So we went home and started beading!  My dear friend Catherine and her daughters came over and helped make bracelets.  By the end of the day Rebecca had 40 bracelets to sell.

Early on Wed morning a sweet friend arrived to pick up Rebecca to take to her college class.  We had prayed with Rebecca about what she would be doing as she was nervous about speaking to a group of people she didn't know.  (My friend is a professor of a college class and had invited Rebecca to share about what she was doing and to bring some bracelets to sell.)  Rebeca was prepared to say a little something - and very nervous about the whole thing! 

The night before,  I asked what she was nervous about (hoping to help dispel some of her fears), it was the typical public speaking fears - that people would laugh at her or that she would forget what she was going to say (how could she forget?  this is her life!).  I tried to encourage her and to remind her that she was doing this for others.  She is shy though and this was a big step for her.  She wanted me to go with her, but I assured her that my friend Pam would take great care of her!

They left a little early so that they could go by the hospital.  They sold a lot of the bracelets there.  Then it was time for the class.  Pam had told the students about Rebecca and introduced her by sharing some information about her as well.  Rebecca only spoke briefly - a couple of minutes at most - which she was happy about.  It was a good experience for her.  Thank you so much Pam for coordinating all of this!

When Rebecca came home I asked if she had sold any bracelets.  I wasn't sure what to expect from a group of college students.  She nodded yes with a smile.  Then I asked how many she had sold.  Her answer - ALL of them!  What a surprise!  She sold 40 bracelets today!  That's her biggest sales day thus far.  In the last two days she has raised about $500.  Wow!!! 

It always brings me to tears to see how God is working through Eliana to touch people's lives.  And how He is working through Rebecca in the same way.  While we were beading and talking last night, she shared with me a couple of songs that she has written about Eliana.  If she'll write the words for me (and give me permission) then I'll share them here.  But basically they were about how much she loves Eliana and how she is great.  One talked about how if someone didn't want to know her because she is different that it would be their loss. 

Some people have asked about how to buy a bracelet.  I'll work on putting some information on this blog.  It would probably be easiest if you would just email me - and please be patient as I'm pretty slow on responding many days. 

Thank you always for your prayers, love and friendship!

With love,
Leslie

PS  I haven't forgotten the promise of more pictures.  I'm working on it!!!

My "Real Girl"

Hi Friends,

It was suggested to me that I enter my daughter Rebecca in the "Real Girl" contest sponsored by the American Girl company.  I worked hard writing this entry and received feedback and constructive critique from several of my friends.  I'm grateful for their help!  I wanted to share the entry as some have asked to read it.

The company indicates that winners will hear by May 1st.  We'll post if we hear any good news.  Enjoy!

*~*~*~*~*~*~*~*

While reading about your search for the 2007 Real Girl, I couldn't help but think of our daughter, Rebecca.  As the second child and only girl in a family with 4 brothers, she has been confronted with a difficult family crisis, and she has certainly risen to the challenge.

Rebecca was elated to learn that she had a little sister on December 16, 2006 when we welcomed Eliana Joy to our family.  She spent many days praying for, anticipating and helping to prepare for the baby and it was difficult for her tender heart when she learned that Eliana was born with congenital heart defects, in addition to Down Syndrome.  Eliana would have to spend time in the Special Care (NICU) nursery and in the months to come, face open heart surgery.

Rebecca visited her new sister in the NICU, and after seeing her struggle along with the other NICU newborns, she began to think of ways she could help babies that needed special care.  Her compassionate heart led her to make two knitted hats, which were given to the NICU nursery.  Continuing her efforts, Rebecca began making beaded bracelets, deciding she would sell them in an effort to raise funds for babies needing heart surgery.  

"Wholehearted" is the name that Rebecca chose for her business, representing the whole heart she wants for her sister and other babies.  Rebecca works diligently to make creative and unique bracelets, all the while helping take care of her younger brothers when Eliana requires special care from me - a feeding tube and another hospital stay.     She has stepped up to the responsibilities with love to assist our family through this incredibly difficult time. 

Rebecca wants to share her vision of helping babies with heart defects.  Her compassion, coupled with the beautiful bracelets, impressed her customers as she was raising money.  Her concern for these special babies is the driving force behind her fundraising.  She tells potential customers about her sister and the desire to help babies in need.  Initially she went door to door in our neighborhood, selling her bracelets and raising $72.  I encouraged her to try to make it to $100, and then she could donate all of the money to Duke Children's Hospital where Eliana is being treated and will have surgery to repair her heart.

Rebecca continued to make bracelets and was offered several opportunities to sell at other venues.  Gathering her courage and relying on her faith, she decided to take advantage of these opportunities for fundraising.  As she shares her heart with others, the response has been overwhelming.  She has donated over 100 hours and raised over $1100 for other babies needing heart repair.  In April, she will be attending a special needs conference to raise more money.  This conference will occur while Eliana is in the hospital recovering from her own heart surgery.  

I am so proud of her diligence, creativity and generousity.  Rebecca is working hard to make a difference in the lives of others, a quality I believe represents a real American Girl! 
 

Another good-bye ... to nursing my baby

**I've added pictures to the entry just prior to this one.  Please be sure to scroll down to see them.

**Note - this entry has to do with breastfeeding so skip it if you don't want to read on this topic.  Not sure if there are many men reading, but just wanted you to be forewarned.  ;-)

Well, I guess it's time to face the inevitable.  I'm probably pumping for the last time.  It's been 3 1/2 months and the reality is my supply is just not going to make it.  I've tried - maybe not doing everything as I should, but I've really tried.  In some ways it is amazing that I've held out this long - probably just shows how stubborn I can be.  I wanted this to work and was willing to do whatever I could.  Ultimately though it just isn't in my control and I need to surrender.

I wanted so much for this to work.  I've experienced the joy of nursing this little one and for that I am thankful.  I wish that it could have been for longer.  Perhaps if her heart had been stronger it might have worked.  Who knows?  I know that for some it may be hard to understand all of the emotions that are tied into this for me.  For others, you will understand.  I have loved nursing my children.  I loved that this was something that only I could do for them.  I loved the ease, convenience and the knowledge that I was doing something special, important and healthy for my baby.  I loved everything about it.  It never seemed a burden or an inconvenience to me as I truly loved this part of the relationship. 

I weaned Daniel sooner than I wanted to and it was shortly after finding out I was pregnant  with Eliana.  I still remember the day - April 27.  (It's also my Mom's birthday.)  I knew that my pregnancy would be rough and I consoled myself with knowing that I had another little one to nurse. 

So much of the last couple of months has been learning to do things differently.  I had expected that adding a 6th child to our family would be easy.   I foresaw no problems with folding a little one into our lives and continuing on with the things that had always worked so well with my other children.  Perhaps this was prideful.  I don't know.  I do know that nothing has prepared me for this experience.

So many of the ways that I love to parent my children - ways that are easy and comfortable to me - have been stripped away from me this time.  I often feel like a novice though I know that my years of parenting experience have to be of benefit to me somehow. 

I find myself yet again late at night typing, pumping and crying.  So sad to be letting go.  Please pray for this sad mommy's heart.  I really need to go to sleep now.  My sweet baby girl is asleep and our next feeding isn't until 6am. 

It's heartbreaking sometimes to let go of your dreams.  I know that in the midst of the tears and sleepless nights that a new dream will come.