So little time

Why is it that time seems so fleeting?  So many projects I want to get done, so many things that need tending to.  Yet, I'm trying to chose the important things.  I do better some days - or some moments - than others.  It's always a struggle or a balancing act. 

I've been choosing the last couple of days to hold onto my sweet, sick baby girl.  (Or maybe she has been choosing for me that I hold on to her.)  I wish I could hold onto my oldest girl a little more as she is feeling quite poorly as well.  My oldest is also sick - though he doesn't mention it often.  It's hard to see your children feeling badly - and hard to take care of sick ones when the ones feeling well aren't always the most helpful.  LOL

A quick update and then I need to run.  Things are much the same with my sick children - sore throats seem to be the main complaint.  Headaches, fever (Eliana only), loss of appetite and general fatigue.  I'm not sure what it is, but will be glad when it is gone.

We have had one change tonight for which I'd love prayer.  Eliana's g-tube site seems to "ooze" more when she is sick.  I noticed this with the salmonella and am seeing it again now.  It has been especially bad today.  It's different than normal in both quantity and also quality.  Also, tonight there was bleeding.  I hate seeing this. 

I've been trying to just wait it out, hoping it would be a brief sickness.  If things are unchanged by tomorrow morning though I'll call our ped.  I wonder when I'll feel comfortable just letting things run their course with Eliana.  She has been through so much!  Having all of her body parts healed and intact will have to help some! 

Trusting that God is holding my children in His arms and loving them with my arms.  Giving thanks for the time that I have to hold and care for my children.  We've cancelled everything thus far this week and the time to just be home has been nice.  We are planning a field trip on Thursday, but will cancel that too if folks aren't better by tomorrow. 

More tomorrow - or as soon as I'm able to write.

With love,

Leslie

Short update

I have more to add than I have time for at the moment.  We have been gone since Thanksgiving to visit my family.  We had a wonderful time with my parents and my sister's family.  I'm so glad we were all able to be together!  This is only the second time we have travelled as a family with Eliana.  She is a great traveller! 

I wanted to post a short prayer request for our family. 

We had planned to leave town on Wed of last week to drive to my parents house.  When two of our boys started feeling poorly - fevers and generally feeling crummy - we waited until the next day to leave. We hoped that they would soon feel better as they were able to be up and about.  (Running around like little boys do!)  Well, the fevers went on and off for a couple of days though it didn't seem to slow them down too much. They developed some coughing though and were joined by Joshua (coughing and no fever).

Last night, Rebecca started complaining of a sore throat. Today she added a "heavy head", loss of appetite, some ear pain and just generally feeling badly to her list of ailments.   The hard part of it all - today is her birthday. She is my child that loves celebrations and looks forward to each one. She has been counting the days to her birthday for weeks. She didn't even feel up to cake or ice cream tonight. I'm wondering if she might have strep throat? Her symptoms are very different from the boys. Christopher also started complaining of a sore throat today.

We drove home today from my parent's house. We stopped to buy Christmas trees and then to eat lunch. I tried feeding Eliana there and she really had a hard time finishing her bottle. Took her much longer than it typically does now. She also slept a LOT this afternoon, which was great for travelling. Well, tonight she felt warm, and she does have a fever. She also has drainage. She won't let me near her nose without a fuss - too many reminders of the past? Poor baby. I was so hoping she would not get anything.  I'm also hoping it will pass quickly and not turn into anything lasting for her.

This has gotten long. I'd love prayers for health for our family. So far, Roger and I are feeling well. I am hoping a good night's sleep will help those that aren't feeling well.

Thank you dear friends.

I'm hoping to post soon about:

• My birthday girl Rebecca who is 12 today!


• Thanksgiving - our time with family and some of our fun leading up to the day.


• A fun event our homeschool group put together - with lots of photos!

That's all for now as I need to go to sleep.  Tomorrow will be an early morning without my best helper!

Love,

Leslie

Go Eliana!

She is crawling!!! She has been taking just one "step" forward, but not really putting it together to go forward - until a couple of days ago. It's fun to watch her move! Thought you might want a peek too!

She was doing really well until she crawled up into her sleeper!  She didn't really have room to go any further.  It's funny - its the first time I've put on a 1 piece sleeper like this since she had her surgery (g-tube).  I wasn't sure how it would work.  (It doesn't as her tube pops open - yuck!)  Guess I have another reason to stick to  her onesies and pants now too. 

Isn't she so cute?!  I wonder if I'll be so excited about each milestone.  Probably.  She will take a little longer to reach each one - and there were lots of eager people to cheer on this new one!

Love,
Leslie

 

 

 

Small bits of encouragment ...

mean so very much!  I've received encouragment this week in so many places - many are ones that I didn't expect.  It made me wonder if maybe  my eyes aren't always open to them.  Though I do know that I've come to appreciate encouragment so much more now.  Or maybe it is just that I feel so much more deeply now.  I always knew it was important, but I'm not sure I've experienced the sweetness of this blessing as much as I have this past year.  I am thankful for these times of blessing that God has orchestrated just for me. 

So, what was encouraging?  I'll share a few with you.  On Sunday, Eliana and I stayed home from church.  We have been trying to keep her home as much as possible until she is healed as we don't want her exposed to additional germs.  Well, that morning as I was praying, I poured out some of my heart to God.  It wasn't something new, just a sharing with the One who already knows that I desire to conform to His will for my life.  When I'm seeking direction, often the answer may be wait.  Perhaps I'm not ready to hear yet what God wants to teach me.  Perhaps I have more to learn.  That day the wait was short.  That afternoon, my dh shared something with me - and in a small way - it was an answer to that prayer.  What I am wanting is for God to place His desires on my heart - and to take away those that aren't from Him.  I'm thinking this is going to be a project that will last the rest of my life! 

Another moment happened after Eliana's feeding therapy.  We stopped by the store for a few moments to pick up some items for dinner.  As I turned down an aisle, a woman spoke to me saying she thought she was my neighbor.  She was right and I was embarrassed not to recognize her.  We talked some about what had been happening and she was so empathetic to our struggles and in her sharing I found that she is also a sister in Christ.  The really sweet part though was her affirmation that having my children stay home with me during this struggle was a good thing - for all of us.  She also commented on how she enjoyed watching my children play - and how well they played with a variety of ages and people.  I guess I sometimes forget that people are watching - and it is nice when someone shares that they see good.  I know too that I don't need the affirmation of others when I'm following God's lead - though it's still nice. 

Today we attended a field trip with our homeschool group.  I was to go on an outside tour of the art museum with the younger children.  Due to rain, we ended up inside.  The gals at the museum decided to allow our entire group to attend a special exhibit (that was originally only for the older children and a few of the adults) - and charged us nothing.  That was an unexpected treat - but was just the start of it.  We had fabulous docents that really enjoyed our children!  They were engaging, affirming and interesting.  After the tour, we received comments on how bright and well-mannered our children were - and that we were doing a great job!  This is always sweet to hear. 

Also comments that I have received here - and in emails or phone calls.  I am blessed continually by people that reach out to me.  Thank you!

Encouragment is such an effective way to deal with doubts.  I don't know a single person that doesn't have doubts about what they are doing.  Is this my best?  Is this the right choice?  Could I be doing better?  We all struggle - and some days (or weeks or months)  hold more struggle than others.  During these times we can feel so weak - so vulnerable.  It is a privilege to be able to walk beside another and to bear their burdens.  There are times when this is done with an encouraging word.  Or even a smile.

Affirming words.  I need to make it a practice to do this much more often - with everyone.  My family, my friends and strangers all need to hear that they have value - not just to me, but more importantly to God.  I encourage you to take a moment to tell someone that they are doing a great job - or that you appreciate something they have done.  It's amazing the effect that encouragment can have - it's something that just gets passed on. 

As always, there is more to share but not enough time.  We've been working hard on our schooling the last couple of weeks and had soooo much fun!  As a result, the house is a mess!  Ah well, we are making memories.  (Though I do want to clean soon as the clutter is driving me a little crazy!)

Love,

Leslie

I Didn't Know

I didn't know.

People often ask ... "Did you know?" The question doesn't need more explanation as I do know what they are asking. The answer is "No.  I didn't know". There were so many things that I didn't know before Eliana was born. I never really thought about all that I was missing either. I was really content right where I was.

Well, God had different plans for my life. I'm thankful for the path I've walked, though it was not one that I would have chosen. I would not go back and choose a different path now though, as it would surely be a path without my precious daughter Eliana.

Before she was born, I didn't know, despite many ultrasounds, that she would come into the world with a little something extra. Something that is a part of every cell in her body - an extra chromosome. Isn't it amazing that something so very small can impact so many things?

I didn't know what it was like to look at my precious child for the first time and without anyone saying anything - I knew.

I didn't know what it felt like to hear that your child - your brand new baby - had a huge hole right in the center of her heart. (It turned out to be 2 holes.)

I didn't know what it felt like to sit in a hospital room without your new baby because the babies in NICU can't come out.

I didn't know that it would feel like being a new parent all over again when there were so many new things to learn. All of the confidence that comes with experience just vanished in the face of so many unknowns and fears.

I didn't know anything much about Duke Children's Hospital - or the wonderful people that work there. I didn't know how fortunate we are to have such a top-notch children's facility in our backyard.

I didn't know much about the heart works - or anything about the many ways that it can not be working the way that it should.

I didn't know what it would feel like to be isolated in my home - afraid to come into contact with any type of germ that would harm my medically fragile baby.  How much I would miss our field trips and even just visiting a friend's home.  Eliana and I stayed home, with the exception of medical appointments, for many months.

I didn't know the chills and fear that would go through my body when our cardiologist told us that Eliana was in heart failure. Those are words that just don't seem right for a newborn.

I didn't know the incredible love and support that was waiting for me and my family from family, friends and even strangers - many that would become friends. The power of an encouraging word has been a sweet gift to me. So many of you reading have blessed me and my family many times over - thank you!

I didn't truly understand the many ways that God is good. That despite my circumstances and despite the times that my prayers were not answered in a way that I wanted, God still remained good. I had to come to a place before Eliana's heart surgery where I was willing to say that I trusted and believed that God was good - even if the outcome of the surgery was not. Oh, that was a hard thing to do!  It brings tears to my eyes just thinking this.

I didn't understand how resiliant and loving children can be. Our 5 older children have been so patient with a mom who has had limited time and attention for them and were willing for their baby sister to get all of the time, love and attention that she needed. They have showered her with that as well and it is precious to see!

I didn't know that the sweet heart of my oldest daughter would be moved to start a project to help other heart babies get the help that they need.

I didn't know I could be a really good nurse - learning various medical procedures, equipment, rates and measurements and more.  I never envisioned my bedroom being a place with so much medical equipment.  I'm thankful though we could care for her at home and not have to spend endless months at the hospital as some people do.

I didn't know that feeding could be such a struggle.  I have always nursed my babies and loved the ease and beauty of that relationship.  I didn't know I would feel like such a failure when this didn't work out.

I didn't know the fear of waiting for various test results and the relief and happiness of hearing that something tested just fine!  What sweet words to hear "normal" in regards to her hearing after having her fail the test repeatedly since birth.

I didn't know the JOYof having a day with no feeding tubes.  The thrill of seeing my daughter eat on her own after 8 months of using a feeding tube.

I didn't know how important it could be to have a pediatrician that truly knew my child and one that was available at any time for questions.  I didn't know what a blessing it would be to have our wonderful ped willing to see us on her off days when we were frightened by what was going on with our daughter.

I didn't know that despite all of my efforts to protect my baby, that she could still get a horrible infection - and fight it with strength I didn't know she had.

I didn't understand fully the power of prayer and how it can knit hearts together.  I don't always understand how prayer works.  I used to think it was about getting what I wanted, but now I think it's more about making me who I need to be, making sure my heart is where it needs to be.

I didn't know that if I just quit fighting to get my way, that the fall into God's arms would be so much easier. The rest and the peace of laying in His arms is so much better than the struggle of fighting for what I think is best.

I didn't know the pain of knowing that some people might see my beloved daughter as a mistake or an error or a project that needed to be fixed.  Or the weight of wondering what the future will hold. 

I didn't know how much I would love this precious little girl who has already changed my life in so many ways.

I didn't know that one so little could bring together so many people in prayer. I didn't know she would touch so many lives and hearts with her story.

I didn't know that being a parent could be so hard - and still worth every single moment for the joy that comes from loving a child.

I didn't know the incredible privilege and joy it would be to welcome Eliana Joy into our family and our hearts forever.

I'm sure that I still have much to learn. There are things I do know in the midst of all that is different.  I know that children are a blessing - ALL children no matter the circumstances.  I know that we have been abundantly blessed in so many ways.  I am often told that my hands are full - when truly it is my heart that is full. 

I know that through it all God will walk with me each step of the way.  He does answer prayers - though not always in the ways that I hoped or even expected.  My sweet girl is a reminder of this in many ways - even her name.  Eliana means "My God answers" - and her middle name is Joy.  I'm thankful that my God is there, ready to answer me with joy.  I have a hope - we all do.  We don't know what lies ahead, though we can know that we are precious in His sight - fully loved and cherished.

Love,

Leslie

Fall Fun

I wanted to add a few pictures of some of our Fall Fun.  I feel like I haven't added any fun details in awhile.  First let me start with a cute picture of Eliana.

Before Eliana got sick we spent a few days doing some fun things - a visit to the State Fair to pick up our entries.  It was interesting seeing the fair as it was being set up and as it was taken down.  I wondered how long it would take to clean up the mess that was there. 

We also visited the Farmer's Market.  The younger boys went on a color hunt to see if they could find things for sale that represented various colors on their list.  The colors we saw were just beautiful and the boys did a good job in their search.

Rebecca and her friend Hanna were working on a project to find as many varieties of potatoes as they could.  All of us enjoyed the various samples that were available. 

This was also a good time to buy a few (small) pumpkins - and to have a traditional picture taken.

We also visited a corn maze with some friends.  There were clues hidden in the maze with educational questions/answers written on them.  It was fun - and also confusing!  We missed a couple of clues - which Christopher went back to find.  They had pedal cars, a barrel train and a hay ride. 

Roger and I celebrated (well, that isn't really what happened) our 18th wedding anniversary.  He brought me some beautiful roses and a very sweet card.  We had our hands full with sick little girl so no special outing this year.

Eliana is doing better.  She is feeling well - no temps.  Her feeding is pretty much back to normal and she even ate some baby food yesterday.  I've been so focused on getting her liquids in that solids have taken a back seat.  She is improving though and that is encouraging.  She still has diarrhea - and sounds like that may continue for awhile yet.  This is definitely a sign that the bacteria is still in her system.  Just tonight she woke in the wee hours - and has a bloody stool again.  I'm hoping that this won't  pick up again! 

Thankfully this has not spread to anyone else.  We are hoping have one designated diaper changer will help in this effort!  We still haven't gotten a call from the health dept.  Maybe we won't - I really don't know.  I'm not sure at this point we'll ever know where she got it.

I did receive another note from her ped.  She told me that her g-tube should be fine!  No need to care for it any differently.  She said the bacteria doesn't like to live in the stomach so we should be fine.  Her g-tube site doesn't seem to be as sensitive and is looking better too.

I had asked if it was possible that I touched something and then passed it on to her - touching her hands or her bottle while we were out.  (Just trying to figure out where she could have gotten this as she really hasn't touched much at all!)  Here is part of her reply to me.

YOU DID NOT DO ANYTHING WRONG!  If your hands were contaminated, you and the others should have gotten some illness.  We can't keep her in a bubble, and the toughness with which she handled this just tells us that she is one tough kid.

I know I keep saying it - and yes, I've told her too - our ped is a treasure!  Truly a special blessing from God in so many ways.

Well, there is always more... a tea party with our Keepers Group, a fun day of schooling today, the boys building a treehouse with their Dad.  That will have to wait for another day.  Let me end with another cute photo of Eliana. 

I am thankful for a time to post when there aren't many requests.  Life is settling down and we are finding our "new normal".  We are continuing to pray for Eliana's health - that she would be healed and suffer no long-term consequences.  We also continue to pray that this would not be spread.  I am very thankful that thus far it has remained contained!

I have much to be thankful for -

*a beautiful, loving and fun family

*a devoted husband and father

*encouraging and faithful friends

*material and physical comforts

*freedoms to live as we choose

~ and most of all a God who cares about each detail of our lives.  In the midst of dirty diapers, whining or complaining children and a house in chaos it can be hard to have the proper perspective.  This past year has given me new eyes to see a lot of things differently.  I am thankful for this new viewpoint and hope that I can continue to learn to look at things and see them the way God does.  To spend my efforts on things that really matter and let go of those that don't.  I think I'll be learning this for the rest of my life.  I'm glad that I have a patient teacher.

Blessings to you all,

 

I'm published!

I have some exciting news!  I'm not sure if I have shared this before - but I have had a small piece published in a magazine!  I am excited!  It's wild to see my name in print!  This is not something I ever would have imagined.  My sweet friend Tami told me earlier this year that she was writing a piece for The Old Schoolhouse magazine (it's a homeschooling magazine).  She was writing about Five in a Row quilts and was looking for others to share their story.  I told her that I would love to participate and she allowed me to co-write the article with her.  She is a delightful and encouraging friend. 

I know that I've shared this before - I don't consider myself a "writer".  I've never had much confidence in my skills and only started this blog as a means to communicate with others about Eliana.  It seemed a great way to share news and photos.  I never realized that it would become so much more.  It has become a place for me to share the ups and downs of life with a special needs child in an open way.  It has become a place of encouragment as many reach out to pray for our family.  It has become a place where God is declared.  At times too, I'm told that others are encouraged by my words and I can only credit God.  I continue to be humbled that He would use anything I say to bless someone else.  Truly, He is good!

I thought you might like a peek at the piece that I wrote and a picture of the quilt to go along with it.  I actually have another quilt too - but don't have a photo of it at the moment.  Maybe I can add that tomorrow.  I've added the photo.  This is a quilt that has been pieced for YEARS - but I haven't gotten around to doing anything more with it.  It does with Before Five in a Row.  Each square represents a different children's picture book.

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

I've had to remove the article.  I didn't realize that the writers have an exclusivity agreement not to post or share in print or digitally for 180 days after the magazine was published.  Sorry about that.  If you are interested in reading it, let me know.  A friend is sending a few extra copies of the magazine.  Or, if you are really patient - I'll post it again in 6 months. 

*~*~*~*~

Maybe, just maybe I can do something with my writing.  I'm not sure.  I'm just trying each day to walk the path that God has layed before me.  Sometimes I'm not even walking it - I'm being carried.  I'm thankful that I'm not alone.

With love,

Leslie

Diagnosis is in ...

and it definitely was not what we thought it was going to be!  Our ped, Dr. L, just called to let me know that the lab reports had come back.  She asked if I knew what it was and I said "rotovirus".  She said "No, it's Salmonella poisoning".

She was shocked - as was I.  She said that it did explain the bloody stools she has been having.  It also explains why she has been so very sick.  Poor little girl!

My mind started reeling and wondering what I had done wrong and how I could have prevented it.  (Is this a reaction that other mothers have?)  Dr. L asked if anyone else had been sick and I said no.  She asked if anyone had been sick before Eliana and again the answer is no.  We've all been really healthy.  She said that based on this, that Eliana did NOT pick this up in our home.  It had to have been from an outside source. 

Dr L told me over and over not to feel guilty.  Yes, she has seen me often enough to know I'd think this.  Or maybe she has seen enough parents to know that this is a normal reaction.  The fact that nobody else has gotten sick when this is highly contagious she said speaks volumes to the good job we are doing in keeping hands clean.  She said we will need to continue to do "crazy handwashing".  Eliana will have this in her stools for weeks.  :-(  So there remains the risk for all of us of contracting this - though hopefully small since we will know to be very careful. 

I'm to expect a call from the health department - as well as any of the places we had been in the days prior to Eliana getting sick.  I've already placed a call to the one indoor place we had been.  The calls aren't to place blame but to help stop the spread of this bacteria.

Why am I feeling guilty?  I'm racking my brain trying to figure out where this came from.  What did I miss?  Most of the places we have visited have been outdoors.  She really doesn't get down and touch much of anything.  I did let her touch 1 toy at a class we attend for my older boys.  This was the first time that I let her sit with me during the class thinking it would be safe.  I have a photo of her touching 1 pumpkin at the Farmer's Market.  In spite of Dr. L telling me that I'm not at fault, I still feel guilt for not protecting my little girl.  I know - I can't protect her from everything.  I just want to.

Dr L also said that Eliana is tough as steel.  She was amazed at how well she handled something so horrible.  She said that many people end up in the hospital with this - from dehydration -  but not our tough little girl.  I'm thankful to know she is strong - in spite of all that her precious little body has been through.

I'm here with puddles in my eyes.  (Not sobbing or hysterical lest anyone wonder - just sad.)  Why does everything make me cry these days?  Both good and bad - I've turned into someone with leaky faucets.

On the up side.  Eliana is smiling.  She is also able to have a diaper changed without crying!!!  Praise God that she is feeling so much better.  Her eating is also improving, though not quite back to where it needs to be.

One other concern is her g-tube site.  She has been much more tender there - Eliana cries when I clean it or try to use it.  It doesn't look infected, but I'm wondering if this may have affected it somehow.  She seems to have more discharge there too.  Just more things to ponder.  Thankfully I have a call in to our ped about this - and I know she'll get back with me tonight. 

With all of this new information, I realize that we have even more to be thankful for.  This was no run of the mill virus but something much more serious.  Thank you God for watching over Eliana and keeping her safe.  Thank you.

Thank you all for your prayers.

With love,

Leslie

So, for several weeks now we'll need to be careful with our little girl.  It will take that long - or longer - for the bacteria to leave her body.  It's times like this when I just want to hibernate.  Guess I'll be wearing her in my sling and being incredibly vigilent over what she is touching.