We are to arrive at the hospital at 6am!

We'll have an early start to our day as we need to arrive and check-in by 6am.  I received the phone call at about 5:30pm to let us know that Eliana was first on the surgical list for the day. 

Eliana just finished her last feeding of the day - and it ended at midnight on the dot!  Thank you God for the perfect timing!  I will be giving her a "feeding" of clear liquids at 3:20am in order to finish by 4am.  Hopefully I will sleep for an hour before getting up at 5am to get ready to go.  I'm a little concerned about us waking on time.  I have an alarm beside my bed this time too and hopefully one of us will hear it.  I had thought of asking some early bird friends to give us a wake-up call, but Roger felt sure he would wake up on time.

I still haven't finished packing.  Yes, I know.  I do have most of it laid out on my bed though.  I'm not expecting to be there long so I'm not thinking I need much.

We are to arrive at 6am in order to check-in.  Then at some point we will be taken back to the pre-op area for them to check her vital signs, put her in a hospital gown and then meet with the anesthesiologists.  I wish we could have the same ones from last time, but they only do heart patients.  I'm not sure if we'll be able to take her to the OR.  It may be an option, but is not our choice.  From there, we just wait.

I thought of one more thing to add to the prayer list.  Please pray that our little girl would learn how to eat.  I'm hoping that having the tube out of her nose/throat will be a turning point for her. 

I've been praying a lot today for Eliana's surgical team.  Praying and picturing God holding her in the palm of His hand as she goes through this surgery.  The neat thing too though is that He will also be holding me - His daughter - in the palm of His hands too.  That thought brings great comfort to my Mama's heart.  I've also been praying that I would listen to Him, that I would be available to Him and that He would be glorified through all of this.  I was encouraged by this verse in my reading today and am definitely praying these words.

May the God of hope fill you with all joy and peace as you trust in him so that you may overflow with hope by the power of the Holy Spirit.    Romans 15:13

Thank you for your prayers.  I will update as soon as I'm able to.  I'm off to finish packing.

Love,

Leslie

 

A Little More Excitment is Good, Right?

I should probably stop saying that I'm hoping that "this" is my last tube placement.  LOL  It just doesn't seem to be going the way that I'm thinking it will - though the end is in sight!!!

Roger woke me this morning to tell me that Eliana's tube was out ... again!  It came out sometime between 3am and 6am.  It was a fresh tape job too.  Hmmm ... I'm not sure how she does it sometimes, but she is good at it and fast to boot.  She does rub her face a lot, even in her sleep.  I know that we will all be glad when she doesn't have to have any more tape on her face!

Her poor little face was very red.  Having her tube pulled 3 times in less than 24 hours can be rough on the skin.  I decided to wait a little bit on reinserting it.  I gave her a bottle and she took a little more than an ounce.  Later in the morning when my friend Lea came to visit, she held Eliana while I put it back in.  She was here for the very first one that I had to place at home - and now this one (but I'm not going to say what I'm hoping).  This time was very smooth.  Eliana hardly fussed at all.  It didn't get "stuck" on her gag reflex at all this time which was sooo nice!  This was #39.

Now, I'm really hoping I'm done!  I have no more tubes.  If she pulls it, I have to put one back in as she needs to be hydrated for surgery.  I'm guessing that I could go through the surgical staff or cardiology to get one on a Monday.  I'm really hoping we won't need to do that.  I guess I won't be putting a tube in her scrapbook after all, huh?

This is typically when I do our week at a glance.  I really don't know much about our upcoming week.  I can write what I do know.

Tomorrow I need to make a couple of phone calls.  The first is to find out when Eliana's surgery is scheduled.  We are thinking it will be early morning and that is what I'm hoping for as well.  I'll post when I know for sure.  I know when they scheduled her heart surgery we were in doing pre-op the day this decision was made and it occurred about mid-morning.  I'll probably try then. 

I also feel that I need to call the medical supply company.  Sending the wrong sized tubes was surely a mistake - but one that should not have happened twice.  I had a very lengthy discussion with them after the first wrong shipment.  I also think it was wrong that nobody called back to offer any other solutions when I was told that they would.  I am thankful that I had other options.  I am thankful that our pediatrician was here on the day that we needed her.  A great solution was found, but I want to make sure that I follow-up on this problem too.  I also don't want our insurance to pay for the 2 shipments of the wrong items that were sent to us.  This isn't something I really want to do, but I do feel like it is the right thing to do.

Tomorrow I need to prepare for another trip to the hospital.  Packing items that we might need for an overnight - or a couple of nights? - stay.  I don't think I'll take much as we live close and I can always get what I've forgotten.  I haven't even made a list yet.  Yes, as usual I'm waiting until the very last moment.  I also need to adjust her feeding schedule in order to get in a last feeding 6 hours before we are to show up at the hospital.  In preparation for an early surgical time we are bumping up her feedings one hour tomorrow.  I'm going to need to be very diligent about staying on a schedule so that she can get as much fluid and nutrients as possible.  We will also be able to give her clear liquids 2 hours before surgery. 

My parents are coming tomorrow.  They will be staying with the rest of the children while we are with Eliana.  I'm so glad that they are willing to come.  I'm thankful that they offered to come without even being asked.  I am very thankful for my parents.  My children are so excited about seeing them!  We'll need to spend some of the day doing some cleaning up.

I also just want to spend some time having fun - reading books or playing games.  A nap would be lovely as well.  I tried to take one today, but the timing of Eliana's nap and feeding just didn't work.  Oh well.  Soon it will be time to turn in.

Tuesday will be surgery.  I don't know any more details other than it should take less than an hour once the surgery begins.  I'm not sure how long the prep and post-op will be.  I don't know how long we will be allowed to stay with her either.  It's alright though.  We'll find out when we need to know.

Here are some things I would love to for ya'll to pray for.

• Please pray that Eliana remains healthy.


• Eliana's skin is looking pretty red from having the tube pulled 3 times in less than 24 hours. Please pray for healing of her skin and that she wouldn't get infected there.


• Please pray that she is well hydrated and that they are able to get the lines in for IV, etc without having to result in more drastic measures (as they did with her heart surgery).


• Please pray for her surgical team - for the health, emotional well-being and skill.


• Her surgeon is Dr Rice. Please pray for wisdom and successful surgery.


• Please pray that we wake up in time and that we don't sleep through the alarm (like we did for her heart surgery - waking up just in time to quickly grab our things and go!).


• Please pray that the surgery is a success. Reading the "possible" things that could happen on the release form that has to be read, discussed and signed is hard. I am hopeful that none of those things will happen to our sweet girl.


• Please pray for her recovery.


• Please pray that this G-tube would be the beginning of the road to successful eating for Eliana. This has been a long road thus far and we would love to see more successes!


• Please pray for our children at home and my parents who will be with them.


• Please pray that we would see and know God's hand, presence and peace through all of this.

Anything else you feel led to pray for would be greatly appreciated

I will update a time for her surgery as I'm able to. I will also try to update from the hospital. Thank you for your faithful prayers for Eliana, me and the rest of our family.

With love,

Leslie

The Drama of a Feeding Tube

Sometimes as I'm writing I ponder on the "drama" of our lives over the last almost 7 months.  I haven't always had a dramatic life.  In fact, I think that for the most part my life has been pretty calm.  I sometimes wondered how other people could have so much drama in their lives and didn't realize that it just wasn't my turn yet.  It isn't that nothing ever happened - it just wasn't so constant and on-going.  I wonder when our lives will be at a point when I have nothing to share or write about.  No pending medical tests or procedures.  No waiting on news from a doctor or therapist.  Just the daily  happenings of life in our family.  One day, things will probably be calm again.  Though I guess that is relative.  For some, imagining life with 6 children in the house might sound like anything but calm.    I'm looking forward to the day when all that I have to share is something funny someone said or a project, outing or book that we've shared as a family.

When I was last writing, Eliana's tube had just been pulled.  Little did I know the drama that was about to ensue.  After getting the tape off of her face and pulling the tube out completely, I got Eliana ready for a bath.  I always bathe her when she has pulled her tube as it is soooo much easier to wash her hair and face without the tube in the way!  After getting her cleaned up, I starting getting her things ready for tube placement.  After getting out all of the supplies, I realized that I was out of tubes.  It wasn't a problem though since I had a new shipment that hadn't yet been opened.  I had thought if I didn't get into the it that I could just return the unopened box.

Well, I got one of the tubes and when I opened it, I could clearly see that it wasn't the right size.  It was too BIG!  It was an "8 French" instead of a "5 French".  This measures the diameter of the tube with one being almost half the size of the other.  Well, I knew that the large size just wasn't going to work in Eliana's tiny little nose.  Not too mention the trauma of inserting one so large on her throat.  If the small size gets "stuck" on her gag reflex, I could only imagine what the larger one would be like.

The error in the delivery frustrated me as this is the second time that it has happened.  I have been very clear on the phone as to the size, brand and type that I needed.  I did happen to have some other "5 french" tubes on hand.  They were a different brand and style that I had not used before, but I decided to try them as it seemed like the only option.  Just as I was preparing the tube, I had the insight to check and see if the port from the feeding bag fit into this new tube.  It did.

My friend Rebecca had been holding Eliana and she had fallen asleep.  We layed her down on a blanket and wrapped her up - still asleep.  I decided to try it while she was sleeping.  Catherine held her head still while I put in the tube.  It went in pretty well.  It did get a little "stuck" at which she started squirming and fussing a little, but not waking completely up.  Finally it went in and she remained asleep.  What a  nice "last time" I thought.  I'm so tired of doing this to my baby.  I'm really looking forward to this being over.  I was pleased that I had tried something new and that it had worked out just fine. 

Shortly after this I start her feeding and went downstairs.  When we heard a funny noise over the monitor, I rushed back upstairs and found that the port from the feeding bag had become separated from Eliana's feeding tube.  So it was just "feeding the bed".  I immediately said "Oh Eliana", thinking she had pulled it apart as she was now awake.  I put the tubes back together and started it again.  It immediately popped off.  Oh no!  I put it together one more time and held it while I started the pump.  I could feel it start to pop and then leak as I held it together.  It clearly was not going to work at all. 

I first called the medical company that ordered the wrong size tubes.  I got a nice man that was on call.  He drove to the warehouse and looked for the correct tube.  They had none in stock.  He offered to fuss at someone on Monday for the mistake that was made.  He also said he would call the owner of the company and have him call me about what my options were.  I never got a call from him.  To be fair, I did continue to use the phone to try to find out other options.  None of the calls were long though. 

I decided that since Eliana had already missed one feeding that I couldn't just wait around.  I tested a syringe with some water to see if I could feed her this way.  I then gave her a complete feeding by using a syringe to push the formula into her tube.  It took 45 minutes and my hand ached afterwards.  It worked though.  As I was doing this, Rebecca made phone calls to several medical supply centers in our area.  We live in an area with a LOT of medical services.  None carried this tube.

At this point I felt like my options were dwindling.  I knew that I could go to the hospital to get one - though I would have to go to the ER as I was sure I couldn't just walk in and ask for a tube.  I considered calling someone in the hospital, but the numbers that I had were for cardiac fellows.  I wasn't sure this was the route I needed to take.  I decided to call our pediatrician to see if she could help.  Dr. L is leaving tomorrow to go out of the country on vacation and I hated to bother her as I was sure she had a lot to do.  She was so gracious - and helpful.  I know I have said this before but we have such a fabulous pediatrician!!!  (I often thank God for having her there in the hospital after Eliana was born.)  After I explained what had happened and what I had done she offered to call one of the hospitals for me.  (We live close to several.)  She called me back not too much later to say that she had talked with a nurse that was willing to give me a tube in the correct size.  She gave me the nurse's number in case the nurse wasn't able to get me.  She also told me that if this didn't work, to call her back.  Isn't she great?  It was a Sat afternoon and she was busy - yet not too busy to help my little girl. 

I waited awhile and then phoned the nurse.  She told me that she was willing to meet me at the hospital entrance (so I wouldn't have to park) to give me 2 tubes.  Oh, what a blessing!  My only other option was to go to the ER and wait for someone there to place a tube for me.  That could have taken ... hours.  It could also have exposed Eliana to a wide variety of germs that she definitely doesn't need this close to another surgery.

With a grateful heart, I drove to the hospital.  The nurse was waiting for me as I pulled up.  (I had phoned just a few minutes earlier to let her know I was close.)  We then drove home.  This trip just took 45 minutes in comparison to what I sure would have been much more time - and money.

As I was driving home, I pondered how God had His hand on all of this.  It wasn't perfect, but it was good.  Had I wished it hadn't happened at all? Yes.  Would it have been nice to have had the right size tubes?  Yes.  Would it have been convenient to have known that the first tube I put in today wouldn't work with the pump?  Yes.  Would it have been nice if the medical supply company had the tubes I needed on hand?  Yes - especially since they would have delivered them.  However, I wasn't going to listen to the "lies" whispering that all of this could have been avoided.  It is part of the "rain" that I walked through today.  I'm sure it could have been much harder.

Through all of this - the whole drama lasting close to 8 hours from first tube out until final (I hope) put in - I had the support and help of good friends.  I have a fabulous pediatrician that was able and willing to help me today!  Had it been tomorrow she would have been gone.  (Though I'm hopeful someone else would have stepped in to fill her shoes.)  As I was driving to and from the hospital I was overwhelmed to tears.  Not sad, desperate tears at all.  I'm not exactly sure why I was moved to tears, though in part they were tears of appreciation for the details that were being worked out. 

When Eliana and I arrived home, we put in tube #38.  I'm really hoping that this is the last one!  If not, I have an extra.  I'm hoping that one will be saved to go in her scrapbook.  I certainly have enough stories to tell about that 16" piece of tubing.

I'm close to the end of an eventful day.  It certainly wasn't how I had planned to spend my day.  I was hoping to prepare/plan for the upcoming school year.  God had different plans.  I'm not sure what I'm supposed to have learned.  Maybe just another lesson on being flexible, being persistant and being thankful.

With love,

Leslie

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