Voice of Truth

Sometimes when I ponder my life  - where I've been or where I'm going - it can become overwhelming.  There are times when I long for the simplicity of life as I remember it.  Times when I just want to stay home from doctor appointments and go out on field trips.  Both have been a huge change for me.  I was one that rarely ever took my children to the doctor.  I could count on one hand the number of times ALL of my children went to the doctor last year.  (I can only remember one visit.)  Eliana has surpassed that in one week many, many times.  I was also used to going on field trips once a week.  I love going on field trips.  I think hands-on learning is one of the most fun ways to learn about most anything from history to science and lots more in between.

Then there are the voices - both those in my head and sometimes from others as well.  The voices of doubt. 

It's too much for you to handle. 

Why isn't your faith stronger? 

Where is your joy? 

Is life always going to be so hard for Eliana? 

Are you doing the best for your family? 

Are you going to be able to homeschool the children? 

Shouldn't you put them in school? 

Are they learning? 

Are you able to be a good Mommy to all of them? 

As I was talking to God the other day, He reminded me through a song that there was only one voice that I needed to listen to.  There is only one voice that always holds truth.

But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid!"
And the voice of truth says "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth     - From Voice of Truth by Casting Crowns

Thank you for this reminder Lord.  I want to listen to you.  I thank you for the many times that you speak your truth to me - through the Bible, through prayer, through songs and often through the love and encouragment of friends and strangers alike.

When the doubts some crashing in, then it is time for me to choose ... to listen and believe the voice of truth.

With love,

Leslie

PS.  I thought I was finished and was checking over my writing.  Eliana was getting a feeding - and pulled out her tube!  It was too far out even though I caught it fairly quickly to get back in.  This tube stayed in a week.  For us, that is a pretty good length of time.  I'm hoping that when I replace this one today that it will be the last time that I have to do this.  It will be my 37th time.  And to think that at one point we thought the tube would be in for just 2 weeks until we could get to heart surgery and I hoped to NEVER have to do it at all!  It has been in now for 5.5 months.  It is time for it to go.   

As I was continuing to reflect and read my Bible, I had a few more things I wanted to share.  One of the reminders to me of God's desire for me came as I studied James when I was pregnant (and often after having Eliana).  I don't always understand, but am trying to trust that God will use all of this for good.

"Consider it all joy, my brothers, when you face trials of many kinds, because you know that the testing of your faith develops perseverance.  Perseverance must finish its work so that you may be mature and complete, not lacking anyhting.  If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him."  James 1: 2- 5  (There have been many, many times when I've prayed for wisdom!)

Also this week I received the test scores of my oldest two children.  After 6 months of very loose and unstructured learning, how did they do?  We did some math and lots of reading - the Bible and many other books.  (I'm so glad that my children like to read!)  I never felt that they weren't learning.  I also realized that many of the lessons that they were learning weren't going to be things on this test.  Things that hopefully will help them as they face the real tests in their lives, the trials and suffering that they will have to endure.  So, how did they do?  They scored high to very high on almost the entire thing.  It was nice to have that encouragment, though I hope that even if the answers had been different that I would have chosen to listen to the voice of truth.  God has called us to this journey and He will equip us to walk it even when it doesn't look like what we have prepared for and even when we feel less than adequate to do the job. 

One last thought before I close.  I was reading in Psalms this morning.  There were a variety of different ones.  Some praising God and His faithfulness.  Others in which the writer feels alone and abandoned.  Those don't always leave me feeling comfortable.  It reminded me though of the times though that I've shared my struggles, my pains and my fears.  God reminded me that David while not perfect, was a man after God's own heart!  At times I have wondered if I should be sharing all of the pain, the struggles, the hurt.  Was this a lack of faith?  Was I doing something wrong?  Was I causing others to doubt by my own doubts and fears?  Even in my doubts and wonderings, God comforts me.  I am seeking Him and it is alright to have these times of struggle - it is normal.  It isn't what I want, but it is part of what I need.  I am thankful that God chose to remind me of that this morning.  What I'm left with still though is a choice.  Who and what am I going to believe?  I know that it won't always be easy but I want to choose the voice of Truth.

Fun on the 4th with the cousins

I couldn't figure out how to put the slideshow that I made into one of the entries.  A sweet friend has offered to put it in the sidebar for me and I may do that as well.  (Thank you Candace!)  For now, here is one of the photos of my children (minus Eliana) with their cousins from  Nebraska.

 

The slideshow is more photos of our fun from the 4th.  Eliana and I were around only for the fireworks which we watched from the front of our house.  If it doesn't work, please let me know and I'll see if I can fix it.  Thanks!  Leslie

http://s176.photobucket.com/albums/w187/rogernelsen/?action=view&current=0ab5fa99.pbw

Surgery - Date is confirmed!

Well, yesterday didn't go quite as I had planned.  It turns out that I had scheduled both the feeding therapy and the pre-op at the same time.  Oops!  Some days I feel that my mind is made of swiss cheese.  I cancelled the feeding therapy which made for a more relaxed start to our day.  (We were also thankfully able to reschedule that for today.)  Thanking God for the way that He worked out these details even when I messed things up.   

Our appointment for pre-op was on the surgical floor.  The floor with the waiting room for families and friends of those in surgery.  It brought memories flooding back of that morning in April when we handed over our little girl.  Times with friends praying and talking.  Times of longing for my little girl.  Times of wondering what was going on and hoping and praying for the best.  Even though the experience was a good one in terms of how well she did, it still has a lot of emotion attached to it.  I was surprised at how it caught me off-guard.  I reminded myself too that this was the place where my little girl's heart was made whole! 

The appointment started when they took all of her vitals including height (26.5"), weight (16lb 11oz), blood pressure, oxygen saturation (97%) and heart rate.  All looked good.  I then met with a gal that talked with me about the surgery.  I asked if the date had been confirmed which seemed to surprise her.  When she looked it wasn't "posted" and so she made a call to confirm.  We are set.

Tuesday 17 July

I had to sign a waiver for the anesthesia.  I know it's standard practice, something everyone has to do and yet it still isn't easy.  It hurts to hear each thing that "might" happen no matter how unlikely.  The hardest were at the end of the list ... brain damage and loss of life  Thankfully Eliana has had a positive response to surgery and anesthesia already so we are hoping, praying and expecting another good experience.

Since her blood workup  has looked good in the past, the gal decided that we didn't need to have blood work done at all!  Praise God!!!  I had asked for prayers about her difficulty with blood draws, but never even considered asking that she not need them at all!  What a sweet surprise.  I told Eliana that this was a good thing and she just flashed  her adorable grin at me. 

I was told that the only abnormality in Eliana's blood was the platelet count after surgery.  (Normal is 100,000 - 400,000 and hers was 900,000.  If it had been 1,000,000 then they would have wanted more testing.)  They are thinking that this was due to surgery as it hasn't been an issue prior to this.

I talked with her about how Eliana is a hard stick for blood draws (very hard time during heart surgery and ended up needing a cut-down on her arm to get the IV inserted).  She talked with me about getting her hydrated prior to surgery to help with that.  I also have the instructions on feeding prior to surgery.  (Last feed at midnight and then clear liquids 2 hours prior to arrival time.)  We don't yet know the arrival time and will get that the day prior to surgery.  Typically the youngest child goes first so we are expecting another early surgery.  This is actually easier on all of us.  The only change in her surgery time would be due to someone needing emergency surgery.  We will be praying that nothing like that happens as it could make things hard for Eliana since she won't be able to eat (which leads to being less hydrated which makes for a harder stick for IV). 

I asked about whether we would escort Eliana to the surgical room.  (We weren't allowed to do this in April due to her age.)  After 6 months this is an option.  It will be up to the anesthesiologist.  I'm fine waiting and just seeing how that works out that morning.

Last stop was to talk with a Child Life Specialist.  She is a very nice gal that I met prior to Eliana's heart surgery.  She asked if I'd seen a g-tube and I replied "Not in real life".  She then showed me 2 kinds of g-tubes and explained how they worked.  Eliana is getting the BARD which doesn't seem to be as common as the Mic-key.  The surgeon told us that the Bard is a good first one for Eliana (and hopefully last one too!).  It lies flatter.  Also the procedure doesn't involve laproscopy down the throat which I really don't want her to have!  The down side is that the tube doesn't "lock" in when getting a feeding.  That is a nice feature.  I'm trusting the Doctor on this one that he is doing the one that is best for Eliana.

So, that's about all that I know.  I'm not sure how long we'll be in the hospital but I don't expect it to be long.  I think if open-heart surgery only requires a 3 night stay then this one should be shorter.    The surgeon told us to expect 2-3 days. 

I'm looking forward to saying good-bye to the tube on her face.  I wish it were good-bye to tube feedings forever - hopefully one day!  My heart feels much better and calmer leading up to this surgery.  Though walking into the "valley of the shadow of death" and feeling God's peace that passes understanding was an incredible blessing during Eliana's heart surgery.  I am thankful for the Master Physician and know that His hand is on all of us!

Just yesterday as I was driving to Eliana's appointment and talking with God a song came on the radio that touched my heart.  He reminded me that I need not fear the future.  He is with me.  He is the reason that I have a future and a hope.  Him.  Not the circumstances with Eliana or anyone else.  Hoping in those will only leave me with pain.  I don't think it means that I won't have pain - I will.  That is part of living in a fallen world.  I do think it means that I can trust that He is with me, holding me, loving me and carrying me through all of it.  I am trying to rest in His arms, in His peace.  Some days I rest more easily than others - you would think I'd have learned that lesson by now. 

Thank you for your prayers and support.  Blessings to each of you!

Leslie

PS  Will try to post more photos soon.  Still trying to figure out the slideshow.

My heart is just aching

I should have posted earlier today when all was good.  I'll share the news from the tests and blessings first for those that want an update on Eliana.  The ache has nothing to do with our sweet girl as she is doing great!  The hurt is just my own  pain.  If you want only the happy part then stop after the update on Eliana.

Eliana's appointments today went very well!!!  When we arrived we were greeted by a very nice speech therapist.  We then met two more very nice gals that were helping - a nurse and another speech therapist.  First thing we did was to change Eliana into a little purple hospital gown.  It reminded me of when she had surgery - though the gown fit her better this time as she is 5 pounds heavier.  They asked some questions and got Eliana ready for the swallow study first. 

Eliana was wrapped and then placed sitting upright in a type of chair for the x-rays.  Barium was added to her food.  She had several different things to test the thickness and her swallow.  I watched the x-ray as they did this and talked some with the fellow.  All looked great!  She is swallowing as she should.  :-)

Next was the upper GI test.  For this she was placed laying down on what looked similar to a  plank with several folded up blankets lying across it.  The first blanket was wrapped around her tummy and then taped.  The nurse then rolled the tape around and around Eliana securing her to the board.  Next came her legs with the same process.  I then looked at the last blanket near her head and asked if her head was going to be wrapped.  The nurse said yes and that she probably wouldn't like it.

The nurse looked at Eliana's tubing and decided that the tape needed to be removed from her forehead.  Ouch!  I told her that Eliana's skin is very sensitive and sure enough it turned red shortly thereafter.  It seems to be doing fine tonight though.  Anyway, she then wrapped the blanket around Eliana's arm while it was stretched up beside her head.  She did this with both arms and then taped them to her head and around the plank.  This plank is able to be moved so that they can get a good look from various angles. 

Two doctors and a fellow were there to to watch the testing.  They were looking for a malrotation (a twist) in her intestine.  Thankfully, there is none!  All looked great!

We were finished with everything in less than 45 minutes from check in to walking out!   Probably our quickest trip ever.  I guess we could have done more in one day.  Oh well.  I am very grateful for the many kind, positive and informative people that God placed in our path today.  They treated us so well and the experience was a very positive one.  (It helped that we got good news too!)

Tonight I've been working on cleaning out my scrapbook room.  I decided to do some organizing in there while I was talking with Catherine on the phone.  She and her family are checking out their new home.  We talked about some of the firsts and lasts that are hard.  Last time doing something together and first time not doing something together like planning field trips for our homeschool group.  We've been working together on this for years and it was hard for her not to be here and a part of what was going on.  We also talked about our children and how our hearts ache that our youngest children - Eliana and Caleb - won't know each of us like the other children have.  That just makes me so sad.

After we talked I started going through old photographs - ones that seemed to be doubles but I wanted to check to make sure that they were already in scrapbooks. I've been trying to clean up my work area a little bit and this just needed to be done.   I got out all of my albums.  Lots of them, as this is my favorite hobby.    As I looked back over the last decade and more I watched our children grow up before my eyes.  From special events to the mundane every day things that they have shared together.  I saw photographs of our houses as they were being built and read the description of how happy we were to be finally living beside each other.

I just didn't expect this as I was "organizing".  I should have thought through it a little more.  It's just going to be hard.  It isn't something that either of us wants - and yet, it is what is going to be.  We both know that God can and will work through this.  He has already blessed each of us in the midst of this difficulty.  I have to admit that to me the timing of all of it has just been so very hard.  It has hurt deeply that on top of all of the struggles with Eliana that this was a burden to bear as well.  I'm sure that there would not have been a good time, but it just doesn't make any sense to me that now is it.

Thank you for your prayers for our families.  It's is hard on all of us - the children included.  Just last night Rebecca was sobbing about this.  Sometimes I just don't want to think about it and I just push it out of my mind.  At times this even works.  As the time for their move draws closer, there is less time to deny what the future holds.  Tears stream down my face as I share my pain.  This is one of those times when I know I just need to go cry out to God.  I know He is holding me.  I know that He loves me.  I can even imagine Him crying with me as He too knows and understands pain. 

The Lord giveth and the Lord taketh away.  Blessed be the name of the Lord.

Love to all,

Leslie

Week at a glance 7/9 - 7/13

Just an update on all that we have going on this week.  It's a busy week - at least the front end of it anyway.

Monday - We go to Duke for an Upper GI and swallow study.  Both involve ingesting barium and then having a x-ray to see the flow of the fluid and to determine if there are any problems.  There will be a feeding therapist there to help Eliana.  I don't really know how long it will take or any more details.  I'm hoping that she will eat and that the test will go smoothly and not cause any distress for her.

Tuesday - We have feeding therapy in the morning and then pre-op work for surgery in the afternoon.  I'm not sure what all is involved in the pre-op work.  I do know that they will be doing blood work which in the past has been difficult for Eliana.  I have asked several times if we could schedule the echo (this is an ultrasound of the heart) for this day (so that I don't have to make 3 trips to the hospital for pre-operative work).  The gal I've been talking to keeps telling me that the pre-op people (who is that?) will decide if she needs an echo.  Even though I've repeatedly told her that Eliana's cardiologist told me that she would need an echo before surgery, this doesn't seem to be enough to get it scheduled.  *sigh*  (Yes, I felt like I was banging my head against the wall on this one.)  I expect this to be a long day between going back and forth between the appointments.  Even longer if they decide to do the echo and Eliana needs to be sedated.

Wednesday - Eliana has physical therapy.  This is typically something that I enjoy - and Eliana does to a degree though it can be a lot of work for her.  I appreciate the encouragment that I hear from the therapist on how well she is doing. 

Thursday & Friday - NOTHING!  Yippee!!!  At the moment we have nothing planned for either day and I love that.  We'll probably hang out at home, maybe play with some friends.  Several friends have talked about getting together and that sounds like fun!

Today we went to a "Salsa walk" at a friend's neighborhood.  As I'm reflecting on going out, I think it was the first time we have been out as a family (except to church) since Eliana was born.  I should ask my other family members, but I think it's right.  (Eliana and I did join the family at an event for his work, though we weren't there the whole time.  This time we left and came home together - though in 2 vehicles since we don't fit in one anymore.) 

Typically Eliana and I stay home.  It has been too much to work around all of the feeding things.  It was a lot of fun.  It was nice to be doing something together - and away from home.  We brought a bag of chips and then walked around to various houses on the street to sample a wide assortment of salsa.  Each person had made salsa from things that they had grown in their garden.  Yum!  Oh and the varieties from traditional to fruit (strawberry, blueberry, peach, pineapple) to vegetable (cucumber, tomatillo, lime, avocado) were so much fun!  So many varieties that I had never before tried.  Really a delightful way to spend the evening.  One neat surprise was seeing my 5yo go to town on the salsa!!!  He ate some of all of them.  I think we have just found the way to get veggies into that little man.

We had a fun visit with my sister, bil and niece.  It was short (they came yesterday morning) but we were so glad to have them here!  The girls had fun playing "spa".  They gave my sister and I a spa treatment which included a shoulder massage, hair styling, rubbing lotion into our hands and feet and painting our nails.  Oh, and cucumber slices on our eyes.  It was a relaxing time.  They had so much fun doing this that they asked if they could visit some of the neighbors to offer a treatment to them too.  Here's a photo of the girls. 

I've been trying to upload a slideshow of 4th of July photos.  The slideshow is made, but I can't figure out how to get them into a post.  If I can't figure it out in a day or so, then I'll just post the link.   

Here are some of our prayer requests:

*That Eliana would swallow willingly for the swallow study.  I'm not sure how they get the fluid in if she is uncooperative.  Just praying that the results would be clear, that if there are any problems that those would show up and that it would be a quick and painless process. 

*Prayers that the person drawing blood would be able to find a vein that will work on the first try so that Eliana does not have to endure repeated pokes.

*For pre-operative work to go smoothly and that all testing that needs to be done can be accomplished on Tuesday.

*Wisdom for all decisions that need to be made regarding surgery.  We have a "tentative date" and it will be confirmed after seeing the results of the tests being done this week.  Once again we remain in limbo.  While it isn't necessarily what I would choose, it isn't so bad either.

*Peace for us as we wait and for our children as they deal with surgery, hospitals and unknowns once again.  Also that we would listen to God and all that He has to tell us as we wait, wonder and walk through our days.

Praises:

*Fun time tonight with family and friends!  It's been a long time and it was a sweet and simple time.  We are used to having many times out together exploring and having fun and I am thankful that we had an opportunity to do something that fit perfectly in between feedings and was close to home too.

*Good health for our family.  This is especially nice given how often we have been in and out of doctor offices and the hospital.  I'm thankful for Eliana's continued health.

*Family.  How fun it has been to have both of our sisters and their families (though we missed our nephew!) here this week!  A treat for all of us.

*Friends.  We are richly blessed in the friend department.  I thank God for the many,  many people that have walked with us - both in real life and also via the internet. 

 

As I prepare for the week - with surgery looming once again - I can't help but reflect on how this compares to the last time we were preparing for surgery.  Those of us with "cardiac kids" talk about what it is like on "this side of surgery".  It is soooo much better on this side!  It was so very hard being on the other side.  It isn't that this side is easy, but it isn't as scary.  Maybe it is easier because we have to learn to trust God, to let go of things we have no control over anyway, and to relax in His love for us.  Maybe it is easier when we see our little ones come through an incredibly significant surgery with flying colors (though it unfortunately isn't that easy for everyone).  It's probably some of all of this.

I know that no matter what our day holds, that God loves me.  He knows where I'm walking and what I'm going to encounter.  I pray that I would listen so as not to miss the opportunities He has before me. 

Thank you for standing with us dear friends,

Leslie

Ped update

I have a couple of praises regarding feeding - yes, feeding!  Last night Eliana ate almost 3 ounces in one feeding!  It has been a long time since she has done this well.  We are doing good on some days to get in ONE ounce in the entire day!  The feeding took a long time, but she was comfortable and willing so we just kept at it.  It made me wonder what it is that keeps her from doing this on a more regular basis.  I could pinpoint nothing different.  I am encouraged that she is able.  I am hoping that getting the NG tube removed will help her out.  I do think that is the source of much of our problems.

Speaking of removing the NG - Eliana did that again today during a feeding.  She ate about one ounce - really good for her now - then had an ounce via the tube before pulling it.  I tried the bottle and she took another ounce.  Yippee!!!  I was excited to see this amount.

Eliana's skin is looking badly again.  She has taken to rubbing her face often - on her hand, against my shoulder when I'm holding her and against the blanket when she is on her tummy.  This causes the tape to come off - or part of it - and typically requires me to remove the rest of the tape and redo it.  Her skin is looking like it has a couple of times in the past.  I decided to leave the tube out for a couple of feedings to give her face a break.  If you think of her, please pray for healing for her cheeks.

During the break we visited the pediatrician.  We were welcomed by several of the staff.  They knew us by name (I was surprised by that) and commented on how they hadn't seen us in a while.  (It's been 1 month.)  It does feel like a while and yet it's only been a month!  I've always enjoyed being known by the staff at my OB/midwife's office as I'm in there weekly (or more) for most of my pregnancy.  I've never been one to visit the ped office much at all though.  There are many, many things that I've been very comfortable doing with my other children that I'm not able to do with Eliana.  It has challenged me in many ways - some of them ways I didn't want to be challenged.  I am thankful for the things I'm learning though and know that Eliana is a precious gift to our family and many others too.

Dr L was pleased with how Eliana is doing.  With the exception of feeding she is really quite healthy and progressing well.  She had several things to share that were encouraging.  (She is very encouraging to me and I think that this is one of the reasons that I really enjoy going to the ped.) 

• Ears -  When she peeked into her ears, she commented on the first ear that she could see good reflection of light.  (This is a good thing!)  This was the left ear - the one that has repeatedly failed the hearing test.  Thank you God!  The other ear looked good as well.


• Muscle tone - She commented that while Eliana does have low muscle tone that it really isn't that bad.  She is doing things well like keeping her hands in mid-line (in front of her body) and rolling over.  This will be a great blessing to her for many things.


• Height and weight - Eliana weighs 16 lb and 6 oz and is 26" tall.  In looking at the growth charts, Eliana is plotted on two different charts.  There is a chart used by most children and on that  one she falls at about 55% in both catagories!  On the chart for children with Down syndrome she falls at 80% for height and 90% for weight.  Dr. L was quite pleased and said that this is something that isn't seen all too often.

Thank you God for these encouragments.  It is so comforting to hear encouraging words from others.  Be it something small or something big - it is just a blessing.  I want to encourage you to take time to share something positive with the people you love, friends, family and even strangers.  We can all use a little more blessing in our lives! 

We had to replace Eliana's tube tonight.  For the first time, she seemed to know what was coming.  To begin the process I wrap Eliana in a blanket to keep her arms and legs from thrashing about.  As I did this she started shaking her head "no" - over and over again.  She didn't fuss, just kept shaking her head back and forth.  It did go in, but it just isn't ever easy any more.  I'm looking forward to knowing that I've done this for the last time.

I have more to share on the upcoming week as I've scheduled a variety of things.  It will have to wait though as it is late and my sister and her family are coming for a visit tomorrow.  :-)

With love,

Leslie

 

Quick update on upcoming surgery

On Monday (July 9) at 10:30am Eliana will be having an Upper GI to check for any malformation of her intestines.  None of us think that there are any problems there as there is no evidence to indicate problems.  The surgeon needs to know this prior to surgery as he would try to fix any additional problems while he was "in".  As best as I understand she will have some sort of liquid/formula with barium in it put in to her tube.  They will use an x-ray to see how the fluid travels through her body. 

She will also be having a swallow study done.  This also involves barium in her formula, but clearly she will need to swallow this.  There will be a feeding therapist there to help her, though it isn't "her" feeding therapist.  I am praying that she would eat enough at that point to give them the information needed to see her swallow.  Any problems with reflux (not making it completely to her stomach and/or coming back up which would irritate her esophagus) or aspiration (going down into her lungs) should be able to be detected.  Again, we see no signs of this outwardly, but are checking to be sure.  She is currently taking Prevacid to help in case she is having reflux.  If there are no signs of this on Monday she will stop taking this med.

She will need additional pre-operative work done next week.  I'm not sure when all of that will be done.  I was asked if we wanted to do all of this in one day, but that seems like a lot for Eliana.  I'm guessing she isn't going to be too happy about the GI/swallow and to add blood draws and a sedated echo (to check her heart) would be a lot in one day.  Since we live close to the hospital, coming another day isn't a huge problem for us.  We are still tentatively scheduled for Tues 17 July for surger.  This might change depending on what the pre-op testing shows. 

Hmmm ... this is kind of a boring, factual entry isn't it?!  I appreciate all of the encouragment ya'll have given me about the last entry on "the bow".  An interesting aside from all that I've been through with Eliana has been this writing.  I've never been much of a writer.  I've kept sporadic diaries or journals, but have never been consistent.  I didn't find the time to do it and didn't really "get" why people would want to blog either.  I just didn't  understand.  The one area in which I have written is in my scrapbooks.  I do a lot of journalling there as I do love having the whole story to go with the pictures. 

Also in terms of the ability to write, I've never had any confidence about my skills.  I don't remember much about writing in high school.  I certainly don't remember ever being  praised for anything I've written.  My senior year I took some test (don't remember what it was) that was given to people in the honors English class.  I wasn't in the class and am not sure why I was allowed to take it.  Anyway I scored well enough on the test to be able to skip the freshman English/writing class in college.  My score wasn't "high" - it was just high enough to exempt out of the class.  I always felt that I had "gotten away" with something.  That somehow I had tricked the system.  This led to me having great doubts about my ability to communicate through the written word.  I've since thought that while I can typically communicate clearly that my writing is just that - clear but not really any good.

Now, reading that last paragraph maybe I'm right.  LOL  My grammar skills aren't the best as I really don't understand the technicalities behind all of the parts of speech.  When I write I just try to put my feelings down on paper (or screen).  I'm not trying to write anything amazing, but just to share my heart.

I'm not sure I explain what having this blog has done for me.  It has brought me comfort and hope in the forms of prayers and encouragment from so many people.  I've gained information on a variety of medical issues that we are facing.  I've also gained some hope in my ability to share my thoughts and feelings.  Just writing through my emotions has helped me.  It has been good to get everything out.  I believe too that being able to look back at this journey will be something I treasure.  The details that I might have forgotten are saved.  I'm thankful for this forum and the opportunity to share.  I'm thankful for you dear friends that care about Eliana and our family. 

My heart is full and I am very blessed.  Maybe ... maybe one day I'll consider writing a book.  That seems pretty far out of my comfort zone though.  It would have to be something God really impressed on my heart as I have no idea how to even begin to do that.  For now, I am thankful to know that my experiences and emotions as we walk this new path are something that does occasionally serve to encourage and bless those that are sharing it with us.  How good is God that He would use me?  It humbles and amazes me that He would do that.  It encourages me to see how He orchestrates the details in my life and in others so that we can see His hand at work.  I'm thankful to know that He loves me and that He uses so many other people to show His love to me every day.

With love,

Leslie

The Blessing of a Bow

 

When Eliana was being born, one of the first comments I remember the OB making was to say that our baby had hair.  I told her that "I didn't have babies with hair".  She replied, "You do now!"  It's funny now, but when she was born I had a hard time with her having hair.  It just seemed that it was one more way that my daughter looked different than I had expected.  It didn't help that it stood straight up!

I remember going to the newborn nursery (they wouldn't bring her out to me) and before they brought Eliana to me, the nurse apologetically told me that she had washed Eliana and combed her hair, but that as it dried this was what it looked like - straight up in the air!  Not the cute bald baby I was used to having.  With all of the other struggles at her birth, I didn't really appreciate her hair at first - in any way.  Seems silly to be saying that now, but it's true.

Shortly after Eliana was born, a sweet friend wrote to ask if she could send me bows.  She commented that it was a "law" in Georgia that little girls needed bows and wasn't sure if it was the same here.  LOL I had no experience with bows!  Rebecca (and all of the boys) had been "bald" and had very little hair at all until past a year of age.  Of course the boys never needed a bow.

Soon a package with an assortment of cute little bows arrived and I began putting them in Eliana's hair.  I liked the way that they looked.  So cute.  Little by little the hair began to grow on me.  I wasn't really sure what to do with the hair other than clip a cute little bow in it.

During her first stay to the hospital at 7 weeks of age,  she wore her bow.  People remembered that bow and commented on it - even months later.  It was memorable.  It became a sort of trademark for Eliana.

When she went into surgery at 4 months of age, she wore her bow.  I took it out during pre-op.  I had thought about asking if she could keep it in, but didn't want to impose and wasn't sure if it would hinder things either.  While she was in surgery, I remember holding on to her little bow, stroking it and longing to be holding her.  When she was out of surgery, I asked and was allowed to replace the bow while she was in the PICU. 

The day after surgery when they had to put in a new IV, they could find no veins in her  poor little body so that had to put it in her head.  They used her bow to help cover it up.  Actually it was clipped to half of a  cup that was placed over the IV line.

Eliana continued to wear her bows - almost every day.  At 6 months, she began pulling her tube with increasing frequency.  It got to be at least daily and sometimes several times a day.  I was thankful when she didn't pull it completely out and I could just push it back in.  The constant need to put the tube back in was stressful to her and it was really causing damage to her face.  (From the tearing off of the tape.)  Her cardiologist suggested that we tape the tube up her nose - and we did.  We used the bow to hold the top of the tube to the top of her head.  Otherwise it dangles just in front of her eyes.  (A moving target that is easier to grab!)

One neat thing about these bows is that there is a small hole/opening at the end of the clip.  It is just large enough for the feeding tube to fit inside of it without  pinching it.  None of the other bows that I've seen locally are made like this.  It is just perfect!  Isn't that just like God to be in the details of something as small as a bow?!  Without the bow to hold the tube I'm not sure it would have worked as well as it has.  Clipping it to the top of her head keeps it out of her face and away from her hands.  Oh, and the hair.  It really has helped that she has hair otherwise there would be no way to use the clip on the bow.  Again, the small details.  God is in them all!!!

Why am I surprised?  He knows the hairs on my head, why would He not care to provide just what she needs -   hair and a cute little bow.

With love,

Leslie

This week at a glance

Just thought I'd share again what our week is looking like.  I like being able to think ahead a little bit and I'm hoping that it helps others too in terms of knowing what is going on here and how to pray for our family. 

Monday - I will be calling to talk with the surgical nurse.  I will be sharing that the ped does want the swallow study done.  Hopefully we will be able to schedule that tomorrow as well as any other pre-op work that needs to be done.  I have a lot of questions about the testing and what it involves.  One of the feeding tube loops that I'm on has given me some information about what to expect with the various tests.  If anyone has other suggestions on questions I should be asking - please share them!

Tuesday - The cousins will be returning from the beach.  They left this morning to visit there for a couple of days.  My children commented that it wasn't hard to say good-bye this time since we will be seeing them again so soon.  They have had a great time together!  I am hoping to share some pictures maybe tomorrow.  I really need to learn to download photos.  

Some of the fun things that they have done so far include going to the library, going on a geocache, shopping, swimming, water balloon fight, kickball, watching a movie and beading bracelets.  Oh and how can I forget - a "Cousins party".  They all helped to decorate a portion of two cakes with frosting and sprinkles.  Everyone got to blow out a candle on his/her cake and open a small gift.  My sweet SIL arranged all of this and the kids had a blast!  Eliana and I haven't been involved in much of the activities due to the feeding pump limiting our time out of the house, but we have enjoyed having them here! 

Wednesday - Hmmm ... what are we going to do to celebrate the 4th?!  I don't know.  We typically spend this time in the mountains with my parents and have our own traditions that we enjoy there.  We need to make some plans though to enjoy the day here!

Thursday - We will say good-bye to the Bakewells.  It will be hard to see them go.  Daniel cried the last time he had to say good-bye to his Aunt Karen.  It has been wonderful having them here to visit!  We sure wish that they lived closer.

Eliana will have physical therapy in the late morning.  Hopefully this will work better with her sleep schedule (or lack thereof).

Friday - Eliana has an appointment with her ped.  It's been a month and we are looking forward to seeing her.  We've talked on the phone several times - and emailed some too.  She really is a blessing.  We'll be talking about the  upcoming surgery.  Unfortunately, her ped will be out of the country when Eliana is scheduled to have her surgery.  Not sure there is any way around this though. 

Saturday - No plans ... yet. 

Sunday - Meeting with some friends to help plan field trips for our homeschool group for the upcoming year.  We like to plan everything out a year at time so that we can plan and then just enjoy the year.  We schedule field trips to coordinate with our curriculum in some way.  It's a wonderful group and we are so thankful to be a part of it!!!  This sweet group of friends has been a tremendous support to me and my family!

I have more to write - and will try to write more tomorrow and add some photos as well.  For now, it's late (2am) and Eliana is finishing her last feeding.  Going to church (or anywhere) always throws off her schedule.  As I was listening to my friend Rebecca talk about something in her home tonight, I realized that I had not been in anyones home, except Catherines next door, in over 6 months.  I know that we really haven't gone anywhere, but the realization just hits me some times in different and odd ways.   This has been an isolating time in many ways.  I am thankful for the friends and family that have come to us - and for the many dear people that I'm connected with via the web!  (I wish I had time to write all of you!) 

I have two additional prayer requests:

Please pray that Eliana would not have reflux.  We don't think that she does, and it would be nice to have that confirmed.

Please pray that her intestines would be properly formed and not twisted in any way.

Thank you dear friends!

With love,

Leslie

Surgical update - tentative date!

Our appointment with the surgeon went well yesterday.  He and his staff are very nice!  He is outgoing and friendly and very easy to talk with and ask questions.  We were asked a lot of questions about her history and why we wanted a G-tube.  It almost felt "elective" and I guess in some ways it is, though it isn't really like we have a choice either.  The doctor said he could do the G-tube "if that was what we wanted'.  I told him that if he had other suggestions that I would be willing to try them.  He commented that it looked like we had tried everything.  I feel like we have.  I want to be thorough and at the same time find guidance from the many wonderful people God has placed in our path.  I am very thankful that I feel we have had excellent medical care.  Perfect?  No.  I do think we have all done our best though and I have no regrets.  Perhaps with hindsight I would have done things differently, but isn't that always the case?

The surgeon wants to do an Upper GI to rule out any twisting (there was another word) or other problems in her intestines.  He didn't think we'd find anything, but just wanted to be sure.  He also said he would be willing to do a swallow study if the pediatrician or feeding therapist wanted them done.  He wanted to find out this before scheduling them as apparently it could be done at the same time.  I'm not sure of all that either involves - though know that I need to find answers.

I told him I didn't think she had reflux and offered to have him watch her eat.  He said he was just planning to take my word for it.  Arching her back is what I'm asked about.  She pulls back but not in pain, but more as a signal that she doesn't want it!  She did the same thing there.  It had been over 4 hours since she had last eaten and she took a couple of sips, swallowed and was done.  *sigh*  My poor little girl. 

We have tentatively scheduled surgery for Tuesday 17 July.  She will need to undergo the testing mentioned above in addition to some cardiac work  prior to her surgery.  The surgeon thought we would be in the hospital 2-3 days.  He also said that in comparision to the cardiac surgery she has already had that this would be much simpler.  The surgery itself lasting about an hour.  The date will be dependant on being able to schedule all of the other necessary testing  prior to this day.  Since next week is a holiday for many it pushes things back a bit. 

The type of G-tube he will be using is called a BARD.  He thought that the open incision was a better route for Eliana than a laproscopic insertion down her throat.  I couldn't agree more!!!  I don't want her to have anything else negative happening to her throat!  There will be an incision through the skin, abdominal wall and into the stomach.  The tube part that is outside of her body will lie flat and is more secure. 

If you want to read more information, here are a couple of links I found late last night.

http://www.pedisurg.com/PtEduc/Tube_Feeding.htm

http://www.opitznet.org/daily.html

One of the most encouraging things that I heard was that "often feeding really takes off" after getting a G-tube.  That is my hope and prayer for our little sweetheart. 

Prayer requests:

• Wisdom in knowing the tests she needs prior to the surgery.


• Health for Eliana and the surgical team/nursing staff.


• Successful operation with no complications.


• If there are problems affecting her ability to eat that they would be found.


• Pre-op testing to go smoothly and to indicate any problems that might exist. 


• Ability to eat.  I really want this to improve so that we can move to a more normal method of feeding.


• Peace as we wait ... and wait ... and wait.  Waiting is never easy.  I'm trying to just fall back into God's loving arms and relax.


• Boldness.  I missed an opportunity yesterday to share how much God has carried me through all of this trial.  I feel badly for just blowing it.  I don't know why I just chickened out - though I did go back and share that I was remiss in not stating it the first time.  What a disappointment for me to see how weak I still am.  Yet, what sweet comfort to know that He is there - waiting for me - loving me in spite of the times that I fail over and over again.  What a comfort to know that He is strong.  All the time.  In spite of my weakness, He is able to do great things in and through my life.  Thank you Lord!

We still have many questions about what the G-tube will be like.  I keep hearing over and over again that it is so much easier than the NG tube.  The NG has been hard.  I feel like I've been confined to our home for much of the last 6 months in addition to the difficulty of placing it over and over again.  I have a series of pictures of the care involved in the NG.  If can remember, I'll try to post them.

Blessed is the man who perseveres under trial, beause when he has stood the test, he will receive the crown of life that God has promised to those who love him.  James 1:12

With love,

Leslie