Wholehearted

This is the name chosen by my daughter Rebecca for her business.  Let me start at the beginning.  Rebecca became interested in beading in the fall and used some of her birthday money to buy supplies in December.  She began making bracelets.  After Eliana was born, she began looking for ways to help other children.  She had been allowed to visit Eliana in the NICU and made two knitted hats to donate there.  Then she decided that she wanted to sell bracelets to raise money for other children needing heart surgery. 

As she began making more bracelets, it was my job was to try to find somewhere for her to sell them.  I was really at a loss as to where that could be and honestly my mind was a little (no really a LOT) distracted to even try to think much on it. 

Rebecca went door to door on our street and sold about $72 worth of bracelets that way.  Most were the stretchy elastic kind which she sold for about $4-$5. 

Last week I read in our church bulletin about a Mom's encouragment night in which Sally Clarkson was speaking.  There were other vendors coming and I asked if Rebecca could be a vendor there too.  She was so excited to be able to participate.

Now, when Rebecca chose the name of her business, Wholehearted, I knew that it was very similar to the name of Sally Clarkson's business (Wholeheart).  I figured that it didn't really matter as we would probably not cross paths.  How funny is it that her first event is with Sally (who was very gracious and encouraging about Rebecca's business).

Since we received permission to sell bracelets only a couple of days before the event, Rebecca worked hard to make bracelets and even had help from 2 friends and family too.  We made signs with pictures of Rebecca with Eliana and a statement about why she was selling the bracelets. 

Here is a picture of my two little girls.

This is what Rebecca shared that we posted on the signs at her table. 

Hi, my name is Rebecca and I'm selling bracelets for Wholehearted.  It's a business I started after my little sister Eliana was born with two holes in her heart.  She is getting a lot of help.  I want kids like her to be able to get help too.  All of the money from the bracelets goes to the Children's Hospital.

The event occurred last Friday night.  Rebecca worked her talbe with one of her friends and raised about $250!  She asked me over and over before the event if I thought anyone would buy her bracelets.  She was nervous about it.  What a sweet thing to see people respond to her offerings.

Rebecca is on the right and is with her friend Hannah. 

A couple of days later she received some beads in the mail.  A little girl had received a bracelet that her mom bought and decided to give Rebecca some of her beads.  She also wrote a precious note to her encouraging her and saying she was praying for Eliana.  That was so sweet!

When I went to our pediatrician on Tues for Eliana's weight check, I told our ped what Rebecca was doing.  She promptly pulled out some money and ordered one of Rebecca's bracelets.  She told one of her colleagues about it and she had the same response. 

Some of the gals that work with my husband also expressed interest in Rebecca's bracelets.  She worked hard making more and then on Wed morning went to work with her Daddy.  He sent me a short email early in the day to let me know that sales were going well.  I have tears again.  By the time she is home for lunch I learn that she has practically "sold out" and has some orders for more bracelets.  She has also sold another $300 worth of bracelets!  And this is not a large office.  What a loving response to my daughters - both of them. 

Rebecca is currently working to fulfill some special orders.  She has also been invited to sell bracelets at a special needs conference next month.  (Thank you Tami!)  She has also received donations for her business.  I'm not sure where we'll go from  here.  I want to encourage and support her - but not overwhelm her.  I think that this is a good opportunity for her to become more comfortable with others.  She tends to be shy though always willing to jump in and help someone out.  Thus far she has raised over $700! 

The response to her efforts have overwhelmed me.  I never imagined that she would be able to do so much!!!  I think she is learning a lot from this effort  - and I am too.  She is learning about hard work, donating your time and efforts to help others, generousity of others and compassion.  She has always had a very tender heart and a willingness to give and give and give.  It shows through so clearly in this project.

I am learning about the difference that a little girl can make!  I am learning that it's good to dream big.  I am learning that God can work in a big way through our giftings if we will let Him.  I'm learning that when people respond - it is a blessing to my heart.  It lets me know that people really do care.  It's a sweet reminder of the love of others and how sharing our love can bless so very many people.

I'm so proud of my little girl.  She is a talented, compassionate person - a "world-changer " as one of my friends put it.  I can learn a lot from her example!  I hope I can learn to be more like her. 

Thankful to be the Mama of some very special kids!
Leslie

Rising to the Challenge

Well, one of my numbers is wrong in the post below.  Change the 4 to a 5 on number of times I've put in the NG tube. 

Eliana pulled it out last during her feeding - again!  I knew it was getting close to time to replace her tape, but wanted to wait as long as possible.  I obviously waited too long.  I was waiting because the tape peels off of her face over time.  If I can wait for most of it to peel, then it doesn't hurt as much as when you have to just pull it off.

Eliana was eating - sitting my lap - and pulled out her tube.  I looked away from her for just a moment and it was out.  She is quick!

This was the 9pm feeding.  I decided to wait until close to midnight to put it back in.  It needs to be at least 2 hour after a feeding so as not to upset her stomach. 

Roger went to bed - he was really exhausted.  I asked Christopher (13yo) if he would help.  He came to my room at midnight without even being asked to help out.  This is the same son that wanted no part of helping initially (he said he wasn't comfortable doing it) and I'm proud of him for stepping up to the challenge.

Eliana was asleep when we started.  I kind of hoped she could sleep through it, but who am I kidding?!  She was having a tube stuck down her nose!    I decided to switch sides to help alleviate some of the skin irritation from the tape.  The first try caused her wake up and cry.  We tried soothing her with her pacifier.  I tried again and hit her "gag reflex".  I then began to wonder if I could only do one side.  Sounds silly I know.  Christopher even commented that maybe we needed to wake up Dad.  (Never mind that he was asleep beside us, all the lights were on and Eliana was crying.  He slept through it all!)

We did finally get it in.  I'm thankful for one more successful insertion, thankful for the prayers of friends and thankful for my son being willing to go beyond his comfort to help his mom and sister. 

More later if I can.  I have pictures and stories from Rebecca's bracelet sales that I'll try to get up soon!

Blessings,
Leslie

Numbers ... it's all about numbers some days

I've been meaning to write for a couple of days and just haven't found the time.  We visited the pediatrician today and I wanted to update things here.  I thought I'd write about some of the numbers in our lives.  I don't think I've ever been so focused on numbers before.  It's amazing some of the things that we are counting.  I'm not going to include hours of sleep per day as that is just too few!

Countless - number of prayers being lifted for our little girl.  Also the friends, family and even strangers (turned friends) that have reached out to us.  We have been so blessed by the love we have received from so many people! 

85 - number of ml per feeding that Eliana gets.  We try to start with a bottle/oral feeding and then finish with the rest in the feeding tube.  This is up from 75ml a week ago.

15 - number of hours Eliana has slept through during the night!  (Of course we are still up every 3 hours for a feeding and then again an hour later to end the feeding.)

11 - number of weeks since Eliana's birth.

9 - number of ounces she has gained in the last week!!!  She is up to 9 pounds and 11 ounces!!!

8 - number of feedings per day.  Every three hours at 3, 6, 9 and 12.

5 - number of sibling who love kissing on and playing with their little sister.

4 - number of hours spent pumping daily.  Though this is declining.  My milk supply is waning and I don't even want to post that number.

4 - number of weeks so far with the feeding tube.

4 - number of times I've put in Eliana's feeding tube.  Roger has also done it once.

3 - number of pediatricians in her exam room today when trying to figure out her care over the next couple of weeks.  (Some are going to be out of town and they are working hard to make sure we are covered.  Really great care!!!)  She is doing well, though her heart murmer is stronger and there is more fluid there.  We expect an increase in meds next week to help with this.

2 - number of hours between feedings (end of one until the beginning of the next). 

2 - number of medicines Eliana is currently taking.  One helps her heart beat more strongly and the other is a diuretic.

1 - number of doctor appointments weekly.  This is a nice change from the first month when we would sometimes have a couple each week.  This is a huge change for us though as we are used to going very infrequently with our other children.

Unknown - time until her surgery.  We are currently looking at late March to April.  She is doing well enough that our cardiologist thinks we'll be able to "plan"  her surgery instead of having to do an emergency one based on her decline.

1 - incredibly cute little girl!  (Thanks for the bows Kendall!!!)


That's all for now!  I'll update more asap on Rebecca's bracelet sales. 

My computer time and typing is a little down these days.  I'm having some troubles with swelling in one finger which makes typing difficult.  Will share more on this later.  Can't take anything as I'm concerned about it's effect on Eliana.

Thank you for your continued prayers for our family.  We are delighting in the precious smiles of our little girl.  Its sweet sunshine to our spirits.

Blessings,
Leslie

Blessings and burdens

Well, this has been a day of both.  I hope I can keep my focus on the positive.  I've been trying - to keep my mind on the pure, good, lovely and upright.  This can be hard to do when you are feeling overwhelmed, tired, sad and scared. 

After spending much of the morning in tears, I was blessed to have notes and emails from sweet friends, a visit from 2 dear friends and several phone calls as well.  I am richly blessed in the friends department.  For that I am so very very thankful!!!  What a amazing thing it is to receive encouragment from another.  I've always known that it was a good thing, but I have never been in a place where I needed it so very much.  I don't like feeling needy - or that I'm a burden.  I have been repeatedly blessed by the love given to me by others.  It's a precious thing to be on the receiving end of others being the hands of Christ to me and my family.  Thank you dear friends!!!

A surprise gift came in the mail today - a case of the liquid formula that we use!  I have no idea where it came from or how we could have gotten it.  It will last us for a week!  That is so nice.  Eliana's feeding budget is a little high at the moment.  We are using liquid formula as the powdered clogs the tubing.  We must add powdered formula to both the liquid formula and the pumped milk in order to increase the calorie content.  This little bit of powder has not been problematic.  Anyway, we are buying large amounts of formula (my pumping is not so productive) and this was a sweet and unexpected blessing.

Rebecca will be selling some of her bracelets at an event at our church tomorrow night.  Sally Clarkson will be speaking to moms and Rebecca will be one of the vendors.  She is excited and a little nervous.  She keeps asking if I think anyone will buy one of her bracelets.  She is planning to make a sign tomorrow to let people know why she is selling the bracelets (her sweet sister Eliana prompted this outreach) and where the money will be going (all proceeds will benefit children needing heart surgery).  If you think of it, say a little prayer for my sweet girl.  She is doing a good thing.  She has been working very hard to make bracelets this week.

That's all for now.  It's 3am and time to go feed Eliana.

Love to you all,
Leslie

Time ... where does it go?

I was pondering on my days and have thought for awhile that I might share what a day here looks like.  I know that it must be hard to imagine and I would love to have you know.  I have had dear friends offer help - and honestly I would LOVE that but some days don't even know what to suggest.  I'm so overwhelmed and sleep deprived that my brain has long since stopped being clear.  I have loved it when someone just decided to help in some way and then did it.  It's hard to know what to ask for sometimes.  I really am  happy and grateful to receive help though.

Here's what the last 24 hours have looked like at our house.

12:00midnight - Feeding Eliana.  She was awake so I first feed her by bottle until she fell asleep.  She took an ounce which for her is pretty good these days.  Then I hook up her feeding tube.  Her feedings involve warming breastmilk/formula and then adding powdered formula to this liquid to boost the calories.  Then the liquid is poured into the bag.  We check Eliana to make sure her tube placement is stlll correct.  This is done by attaching a syringe with air to her feeding tube.  Listening to her stomach with a stethoscope while pusing the air into the tube.  If the placement is correct, you hear a "whoosh" sound.  Thankfully we've always heard that!  Feeding by tube takes about an hour - less if she has eaten by bottle.

1:00am - Shut off the pump.  Disconnect the pump tube from Eliana's feeding tube.  Clean out her tubing with 1cc of water.

Go downstairs and do some prep for dinner for tomorrow.  I haven't cooked much at all thanks to many meals delivered to us - but this week I'm cooking. 

1:30am - Pump.  I'm still trying to express breastmilk.  It's hard and my supply is low.  She does occasionally nurse which is sweet.  I'm still not sure I can hang on much longer.  This has been physically and emotionally draining.  I often pump for about an hour at a time.  :(  Prayers for wisdom are always appreciated.

I use this time to check emails and try to respond.  I'm really far behind though and don't think I'll be able to catch up.  I've greatly appreciated the support I've received via email.  It's amazing the good of an encouraging word!!!  Don't ever underestimate the powerful effect of encouragment on someone else!   I also use this time to read the FIAR website - and to type in my blog.

3:00am - Time for another feeding.  After getting Eliana set up and washing some bottles I head to bed.  This is typically when I go to sleep.  I know - it's too late.  Between pumping and feeding it has just been easier to stay awake.

4:00am - Cut off the pump.

6:00am - Eliana's feeding.  This one is Roger's turn and I'm thankful to sleep through it!

9:00am - Time for another feeding.  When I go to check on Eliana I find that her pump part was not closed and formula has leaked out and onto her bedding.  I take Eliana out of the crib and set up another place for her to be fed.  I change her diaper and dress her.  Give her both meds.  Start the feeding.  Strip the crib linens and wash them.  Start to pump.

10:20am - End Eliana's feeding and my pumping.  The children have been watching Liberty Kids on tv and playing.  Rebecca does a great job of playing with the boys in the mornings!

Go down to start a crockpot dinner.  Talk with the children.  Get dinner finished and thankfully check on it a little later.  I forgot to plug it in.  So glad to have found that mistake now!

11:00am - Check on laundry.  Shower and dress.  Clean some downstairs.  Talk with the children.
Shower and dress.  Pack laundry bag.  Get children started on lunch.

12:00 noon- Time for the next feeding as well as time to pump.  Use this time to read my Bible, pray and read some online.

1:00pm - Stop feeding.  Prepare to leave for dr appt.  Yes, it is midday and I have done nothing but feed and pump.  *sigh*  Not all days are quite like this.  It's harder when I need to leave the house as I really have to watch the time.  It's much easier to just be home!

1:40pm - Cardiology appt at Duke.  I'm so thankful to be close to a great medical facility!  What a blessing!!  Don't have to wait too long.  We meet first with a nurse to check on her vitals.  I was excited to check on her weight gain.  She had gained 7 ounces last week in 5 days remember?  It had been 6 days since then.  When her weight came up it was in kilos first (I can't translate) and then pounds - 9 pounds and 2.4 ounces.  Only a 1.4 ounce weight gain.  I was disappointed to say the least.

Met with the cardiologist.  Roger came with me to most of the appts during the first 6 or 7 weeks.  With a major surgery coming up, we feel it's best that he spend the time at work now and I go to the appts alone.  The cardiologist felt that her weight gain was probably due to the amt she was consuming.  We hadn't changed her amt with the most recent weight gain - so that is what we are doing now.  Up to 85ml per feeding.  We are to watch for signs of her not being able to tolerate this amount (spitting up) and then decrease it if that happens.  He thinks her heart is doing well.  Her med amounts are still good. 

I told him that it was driving Roger a little crazy not knowing the surgery date.  He said he would work on it.  I told him that we were both fine with waiting and even pushing back the estimated date as that would be best for Eliana.  Dr. C told me that he thought we'd be able to plan her surgery - and not have to do it as an emergency based on how she was doing.  That was great to hear!  We should have a 1 to 2 week notice of her surgery to get things lined up at home.

We will see Dr C again in 2 weeks - well, 2 weeks and a day so that we don't have to meet on Christopher's birthday.  We'll see the pediatrician next week.  I like that Eliana is being monitored so closely.  She is in good hands.

3:20pm - Leave dr appt for home.  It's never a quick thing to go to a dr anymore.

3:45pm - Arrive home.  Exchange feeding bag for a new one.  They need to be changed every 24 hours.  Prepare formula and then prime the bag so that it is ready to go.  Eliana is awake and takes an ounce by bottle.  The rest of the feed is done by tube.

4:45pm - Finish the feed.

5:00pm - I pump again.  I talk with the children as they wander in.  I've used this time for reading aloud and doing some other things with the children - though not as much as I'd like.  Visit with my friend.

6:30pm - Work on finishing dinner. 

6:45pm - We are off of our 3 hour routine a little bit so I'm adjusting the times until we can get back on schedule.  Eliana eats some by bottle and then finishes by tube.  When she is finished I eat dinner with the rest of the family.  Then we clean up.

8:20pm - Decide to make a quick run to the craft store.  Two oldest go with me.  This is only the 2nd time I've left the house to run an errand since Eliana has been born.  Only the second time I've been without her.  Both were short times.

We buy beads at the store.  My daughter is making bead bracelets to sell to raise money for other children needing heart surgery.  She has been so touched by her sister's heart condition that she wanted to raise money for other children that might not be able to afford it.  She has mainly sold bracelets around the neighborhood.  She has raised about $80 (I think) so far.  I don't really know where she can go to sell these? (If you have ideas - please share them!)  I did call a friend who is going to let her sell them at a Mom's event on Fri night at our church.  So, she'll be busy making bracelets and working on a sign to prepare for this opportunity.

9:10pm - Arrive home and prepare for another feeding.  Admininster meds first.  Again she takes a bottle and then finishes by tube. 

10:30pm - Pump.  Talk with Roger. 

Then at midnight we start the feeding cycle again.  Some days feel better than this one.  I am looking forward to more time with my children tomorrow.  I am thankful that they are happy playing, reading books, watching some movies and entertaining each other when I can't be with them.  They love their little sister so much and really have done so well with the amount of time and care that she needs.  I'm so thankful for that.

If you have hung in this long ... bless you!  Not sure if this was interesting or helpful, but this was a day in our lives.

Blessings,
Leslie

Never a dull moment

I was just pondering this morning thinking I had nothing to write.  Things were seeming calm ... and that is a nice thing at times. 

It was a beautiful day here and Roger and the children were outside playing.  I had just hooked Eliana up to her feeding tube and was trying to finish up some laundry.  She started fussing and I thought she probably just wanted to be held.  I decided to let her wait a few moments while I finished sorting some things on the bed.  (I was in the same room with her.) 

Well, when I went over to see her, I could see her tube was across her face.  That happens when she moves around.  But this looked different.  I could see the tape still on her face ... but wait the tubing was green, not clear.  She had pulled her tube out again!  And during a feeding no less!!!  No wonder she was fussing.  The tube was still pumping food onto her (a little) and the bedding! 

I had to wonder if she just pulled it out quickly.  Did she even realize what she was doing?  Then as I started thinking about what had happened, I quickly became very thankful that she had not aspirated any of the food into her lungs!  Amd that the tubing had come out completely.  Thank you God for watching over my baby when I'm not!

Since she had eaten some by bottle and tube, I decided not to try to reinsert the tube until just before her next feeding.  It was nice to see her sweet little face without the bandages/tube for a short while..  The bandages seem to irritate her skin some too.  It did fade by the time we were ready to put it on again, but it may be worth looking into other options for her.

Roger came in to help insert the tube.  We said a quick prayer (and were joined by some sweet FIAR friends in praying too) and then put the tube in.  Thankfully it went in smoothly and easily.  Roger commented that I was getting to be "an old pro" at this.  Not something I really want to be an old pro at though!  I am very thankful that it has gone well both times we've had to do it at home.

So, this last tube lasted for 10 days.  That was pretty good.  I'm hoping for another 10 days on this one.

We will see the cardiologist on Monday for another heart/weight check.  She is seeming a little plumper to me.  She is also starting to sweat some.  I know that was one of the signs we were to look for of more heart failure.  I'm not sure if it's that or just the unusually warm weather we are having.   I'm sure we'll find out on Monday.

Eliana is seeming more alert these days.  I'm sure the increase in calories/weight is helping a lot!  She is even fussing more - which is unusual for her.  She is also "talking" and smiling much more.  I love this part!!!  Those cute little "baby conversations".  Do you know what I mean?  When she coos a litlte something and I answer.  Then she "says" a little something else and waits for me to respond.  So very sweet!

Hoping for a dull (read "calm") day tomorrow!  And if not, that God will walk with us through the tough spots!  He is faithful to be with us!

Blessings,
Leslie

This ought to make you smile ...

as it sure did us!!!  I just love big wide-mouthed baby smiles.  You can't help but smile back at them!  Roger caught this smile in his first attempt at a picture.  Didn't he do a great job?!



As a note of encouragment, a friend from the FIAR boards wrote to tell me that in her experience early smiles were a positive indicator of good things to come developmentally!  We hope so.  For now, we are just enjoying seeing happiness and delight in our little girls eyes and her beautiful smile!



Enjoy!

7 Ounces!!!

Yippee!!!!  (I need some more icons here!  Where is the one doing the happy dance?!!)   Eliana had her ped appointment today and she has gained 7 ounces in the last 5 days!!!  That is her biggest gain yet!    Our ped is thrilled - and so are we!  Eliana currently weighs 9 pounds and 1 ounce.  (Still smaller than her next oldest sibling at birth.) 

Our ped was also very happy with how her heart sounds, her movement (much more active now), her oral motor skills (she is trying to suck her thumb/hand and is pretty persistant) and even her body/head control.  It was really a good visit. 

She even commented that based on how Eliana is looking now we might be able to wait until April to have surgery.  I really want to get us out of this "yuck" season.  So many of our friends have been hit with this too - it's just everywhere!  Makes you want to stay inside and at home for sure!  

Our next dr appt is on Monday with the cardiologist.  How nice it is to only have 1 dr appt this week.  (What a comment from someone that is used to going many many months between appts for our children!)

That's all for now.  Don't know that I have time to get into the many other things on my heart - like nursing/pumping and how much to keep trying as well as schooling my children and working to creatively do this while we are dealing with such huge life issues with Eliana.  We continue to appreciate the support and encouragment from so many people.  I'm waaaaay behind on answering emails - but please know that I appreciate them so very much! 

With love and a happy heart,
Leslie

Good health

is such a blessing!!!  It takes having it removed sometimes to really appreciate the joy of feeling well.  Having experienced a difficult last year with my health (Hyperemesis Gravidarum) during pregnancy, I have so appreciated days when I felt well and was able to eat. 





I am thankful to report that all of my family is feeling well!    I am so thankful that Eliana has remained well!  Isaiah, our 5yo, also managed to escape this illness.  He was very lonely being the only well one and was so glad when he was able to be with everyone else.





We have a ped appointment today for another weight check.  We have been adding the additional powdered formula to boost the calorie content of her feeds.  Hopefully this has helped.  I can't really tell.  She seems content most of the time - and sleeps most of the rest of it.





Praising God for good health today.  I hope you are experiencing this blessing as well!



With love,

Leslie

Picture of the children

I so wanted a picture of all of the children at Christmas.  I had thought it would be a neat thing to share with others as well as to have for my scrapbook.  Well, with all of the illness that hit our house after Eliana came home, we found it was mid-January before we could get our Christmas picture!  This one is the best of the bunch.