Trying to add another photo

This was the first day after Eliana's surgery when the children came to visit her.  She gave Christopher a smile - her first after surgery.  I was thrilled to see her smile!!!  I was concern  ed that she might lose her ability to smile as I had heard this was possible after heart surgery.  What a thankful praise to God to see that it didn't happen to Eliana!



With love,

Leslie

PS  I added two entries today, so see the longer one below. 

What fun we are having with Aunt Karen!

It has been so wonderful to have Roger's sister, Karen, here to visit and help us out!  She is such a sweetheart!  The children are just loving having her here to play with, talk to and just have fun hanging out!  We are all going to be sad to see her leave - though I'm sure her family is going to be glad to have her home!

Karen took the children strawberry picking today - and they came home with 8 flats of berries!  They had a great time and we are trying to figure out what to do with so many berries - in addition to sharing some with friends.  They had a grand time making smoothies and popsicles with them earlier.

Karen has played games, read books, learned to bead bracelets and so much more!  She has helped out tons around the house, held Eliana and even took over a feeding today so I could go and get my hair cut.  She really is a sweet sister-in-law.  I'm so thankful for her.  I just wished that they lived closer to us!

Eliana is doing pretty well.  She is crying more now - which is so unusual for her!  She almost NEVER cried before her surgery.  Nothing bothered her - she rarely ever even protested for food.  I know that wasn't normal, but it is what we were used to with her.  So now I'm trying to figure out her cries.  It's been a little hard as there is still much I don't know.  Tonight getting close to 9pm she started to fuss - then cry as I got her bottle ready.  She wanted to eat - but just couldn't seem to get going.  She seemed a little "stuffy", but I couldn't suction anything from her nose.  I ended up holding her and bouncing her and trying to settle her for about 30 minutes.  She took her whole feeding by tube.  I'm thankful we still have that option, though I do want to get rid of it too!  It's been in much longer than I had anticipated it would be.

Most recent prayer requests from here involve her hearing and getting started with therapists.  Eliana has an appointment on Wed at 1pm with an ENT (Ear, Nose & Throat specialist).

• Any problems with her ears would be seen/detected by the ENT with an accurate diagnosis


• No hearing loss for my little girl


• Wisdom in knowing how to treat her.


• Peace for me as I wait - this has been a long season of waiting!

We are also trying to figure out therapy for Eliana and it too is overwhelming. Trying to "choose" someone and to figure out what she needs is hard when there is just so much I don't know. I would love prayers for wisdom in choosing the right therapist! This is a long-term relationship (though I know I can change it if isn't working - I really don't want to do that.) This is someone that will be in my home regularly and I really want to feel comfortable with her! Honestly the idea of people in my home - that I don't know - is a little intimidating. I don't want to feel that we have to have it all together - clean house, well behaved children, etc. in order not to be judged. I've probably just reading to many stories of CPS investigations - which I know this isn't. I know my fears may sound irrational - and hopefully I'll feel that way too after meeting with them!!

I have greatly appreciate the many friends that have shared stories with me about their own children facing similar situations with hearing - and how all turned out fine!  I am hoping and praying that they same will be true for Eliana.  I have seen God work out so many details - even the smallest ones - and know that no matter what the outcome that He will work in this too.  I know that He loves my little girl more than we do. 

Eliana is sleeping and taking her last feeding of the day.  It's just after midnight here and I'll be going to sleep soon too.  I hope you are having a great day wherever you are!  I am thankful for all of you - for your prayers, your encouragment and your love.  We are blessed beyond measure!

With love,

Leslie

PS  I know it's late to ask this, but if any of you want to be put on my "mailing list" then you will receive a notice when I've posted to the blog.  Just let me know - send me an email - and I'll add you to the list. 

Visit with Eliana's surgeon yesterday

Just to update on Eliana's most recent medical appointment.  She was scheduled to meet with her surgeon one last time yesterday (Fri 4/27).  When we arrived we also found out that she was scheduled for blood work, a chest x-ray and an EKG.  Wish we had known that in advance so I could have given her some tylenol.  She didn't like the heel prick and cried and cried as they tried to get enough blood drawn.  The other two tests were easy and she didn't mind them at all.  Everything was fine with both the chest x-ray and EKG.

We had a good meeting with Dr. Jaggers.  He thinks she looks well and is healing well.  Her incision site looks good and her bones (sternum) are also healing well.  He said that often it is hard for bones to heal well because babies can be very wiggly  and pull the bones apart, though thankfully that hasn't happened with Eliana.  She is approved to be on her tummy and to have a bath.  We still need to be careful on how we hold her so as not to put stress on her chest (something that might pull on it like picking her up under her arms).

We asked some questions about her surgery and learned that her ASD (Atrial Septal Defect)  was larger than they thought prior to the surgery.  Instead of suturing it, he also used a patch on that hole.  The patch is made from a "gortex" material that is resistant to bacteria.  Her skin tissues will grow around it.  As he was explaining what he had to do to repair this hole, he was looking for paper.  I handed him my notebook and he drew a picture of her heart and where the holes were located.  Explaining how the ASD was under the septal leaflet of the valve.  (Sorry if this is too much technical info, though some will like it.)  He had to cut away the tendons (may not be the right word) that helped this valve to open and close to be able to get to this hole and repair it.

Dr. Jaggers seemed to like explaining all of this and I think it's neat to have the hand-drawn picture from one that has seen her heart.  Eliana's baby scrapbook is going to be filled with a lot of unusual things - whenever I have time to get back to that hobby.   

I'm going to go nap while the house is quiet and Eliana is sleeping.  She is feeling better, though still having some fussy times.  Yesterday about 5:30pm she started crying and wouldn't be settled.  I tried feeding her and she seemed hungry.  After swallowing though, she cried more.  Not sure if she is still having pain in her throat?  I tried a little longer to feed her, then stopped and focused on getting her settled.  She fell asleep and didn't wake until 7am this morning!  The day before yesterday we had a similar time only she fell asleep about 4 or 4:30 in the afternoon and slept until the next morning.

More later. 

Love,  Leslie

Photos and More

It's been a busy last 24 hours.  Last night, Roger's sister arrived to stay for a week and help us.  We are all thrilled to have Aunt Karen here!!!  She had a tough time getting here with cancellations and rerouted planes and we were glad to have her finally here!  She is a nurse with lots of experience.  She is a delight and we are thankful she is willing to be here for us.

Eliana had a great visit with her pediatrician on Tuesday.  Her weight is up again.  In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week!  How amazing is that?!  Sweet baby girl really was using a lot of energy with her heart.  We aren't going back to the ped for a month!  A month!  Seems like a really long time when we've been there weekly or every other week for the last 4 months.  I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined!  I'm so thankful for the excellent care she has received there!

Today we visited a feeding specialist.  She watched Eliana and tried to give me tips.  We tried changing some of the bottle pieces to help her out, but just need to keep working on it.  She is doing better, but still has a ways to go before we are getting rid of that feeding tube.  The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.

I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it.  Oh yes, we are doing that too.  When Eliana was an infant, she passed the hearing screen in her right ear but not the left.  I even went back when she was a week old and had the test redone - same results.  We haven't followed up again until now - well, because we were really focused on her heart. 

They wanted her asleep for the test.  She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her.  She wasn't fussy though - very still and quiet for an awake baby.  Even so, they couldn't get a reading with the first test or the second.  The third test also did not give a passing mark in her left ear, but did in her right.  As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!

The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication.  He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up.  He can't be sure that there is something wrong with the left ear, but she could have some hearing loss.  I listened and remained calm even though I just wanted to cry!  Rebecca was with me and I didn't want her upset.  Just before we left he did one more test and told us that her left eardrum wasn't really moving.  Later when I talked with Eliana's ped.  she said that this most likely indicated fluid.  I'm hoping and praying that is what is happening.

Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again?  To hold my baby and not worry about her heart and surgery.  This just surprised me today.  I wasn't prepared to think my baby might have hearing problems too.

On my way home, I called and set up an ENT appt for next Wed for Eliana.  Please pray that if there are problems, that the ENT will be able to detect them.   Of course, I'm also praying that there are no problems!  Praying that it is just fluid and that she has not suffered hearing loss.  Thank you for praying once again for our baby!

Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this.  I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles.  (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.)  I felt God comforting me by saying that her soul is what He was talking about - not her earthly body.  Her soul is made in His very image!  Later I was reminded of a verse in which it tells us that God does not see the same way people see.  People look at the outside of a person, but the Lord looks at the heart.  Thank you God for encouraging my heart once again.  The heart.  That has been a huge lesson for me this year. 

OK, I've been promising photos and here they are in slideshow format.  I've been wanting to clean them up - or post them directly to the site, but haven't been able to.  I Will try to post some here if the link to the slideshow doesn't work.

***WARNING***  I don't think that these are as "bad" as the last slideshow.  However, you can see her incision on some of the photos.  If you have children watching, you might want to preview them.

Here's the first set.  Most are the day after surgery.   The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that!  One with a man in blue scrubs is one of her anesthesiologists.   I tried to label the pictures, but not sure how that will work.  I'm not sure if the link will work or if you'll have to cut and paste.  Let me know if it doesn't work.

http://s176.photobucket.com/albums/w187/rogernelsen/4-17-07/?action=view&current=1177429633.pbw

Second set - This is two days post-op.  Fewer cords, no IV, etc.   The man holding her when she is fussing is Dr. Jaggers, her surgeon.  Sorry for the weird effects of my striped shirt.

http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-18-07/?action=view&current=1176954299.pbw

Final Day.  The first picture is Eliana's cardiologist, Dr. Carboni.  Pictures at the end are of Duke Hospital.

http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-19-07/?action=view&current=1177227073.pbw

Tomorrow is Eliana's follow-up appointment with her surgeon.  Please pray for wisdom in knowing questions that we should ask.  I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.

I'm worn out and am hoping to go to sleep soon.  Eliana was up late last night, most of the day and has been asleep since late afternoon.  I'm hoping she'll still be able to sleep through the night.

Thank you for your prayers for us.

With love

Leslie                                                                        

Wholehearted Bracelets Update

Thanks for being patient with me in waiting for an update.  Things have been busy around here! 

Rebecca attended a Special Needs Conference near our home on Saturday.  She was invited by a friend (thank you Tami)to share her vendor booth space and was looking forward to the opportunity.  We had anticipated Eliana still being in the hospital at that time and thus arranged for a friend to take her to the conference.  When I ended up being home with Eliana, Rebecca wanted my company/support there, but was happy to have friends go with her instead (thank you Catherine and Hannah).  Did I mention that Rebecca can be a little on the shy side?

While at the conference, $285 make that $295 (I just counted the $) worth of bracelets were sold!  Rebecca  also spoke with a father there who has a child with heart problems.  He was interested in her charity and wanted to know if she might be interested in expanding.  I'm not sure that we could expand in our current format, though the idea does have appeal. 

For now, our family - and most especially Rebecca - has spent many, many hours on this ministry.  We have been thankful for the times when friends have helped.  The day to day filling of orders, making bracelets and selling them has fallen to a tender-hearted 11yo girl though.  Quite an undertaking!!!  She has sold over $2500 in the last month and a half!  We would never have been able to do this without the support and interest of friends - and the wonderful "word-of-mouth" advertising she has received.

Rebecca received a sweet note last week from the daughter of one of my on-line friends.  The mom and daughter were both touched by what Rebecca is doing and the 7yo daughter has decided to make and sell bracelets for Rebecca and donate the money to her cause!  She also donated $10 of her own money.  (Thank you Michelle and Amy!)  Oh, the tender hearts of children are so sweet!  What an example to me of compassion and love!

Rebecca still has a good inventory left and is planning to visit several places in the next week as well as finish off some special orders.  Tomorrow we will be going to Duke for an appointment for Eliana with a feeding specialist.  Afterwards we will be meeting with a nurse that works on the adult cardiac floor.  She was given one of Rebecca's bracelets by her husband (who works with Roger) and has been taking orders for Rebecca!  Isn't that neat?!

It's been hard to know how exactly to market this - and manage it as a business.  This is not something we have done before and honestly I never expected it to grow this big!  I do think it's a great idea, a wonderful way to help other children and a fabulous learning opportunity for all of us.  We have seen God's blessing on her venture and have been thankful for the distraction that it offered our family during an incredibly stressful time!

Today Rebecca and I are planning to visit a local craft store (chain) to see if they might be interested in donating anything to her ministry.  When we began this project, we decided to fund her supplies so that ALL of the money in sales would go towards her cause.  We have received support from friends and thought that some area businesses might be interested in helping too.  We'll see.  A big step for my girl who is learning to work through her shyness.

I need to go update the numbers for her sales.  Her total is currently $2704.00!  Correction here too - $2714!  Her dreaming big goal of $5000 is looking more managable all the time! 

Will try to post more later about yesterday's  pediatrician appointment - and the pictures too.

Love,

Leslie

Changes in the Last Week

Has it been a week already?  So much seems like a blur.  I was reading back over some of my entries on the day of her surgery and was surprised that some of the details I didn't recall - like how I held on to her little bow.  I'm glad to have this wriiten record. 

I have noticed some changes over the last week.

• Less sweating - my poor child was always warm.  When I'd hold her in my lap, my legs would end up wet where her head had been.


• Her heart used to pound - really pound!  I could lay my hand on her chest and feel her heart working so hard!  This has been the most striking change to me.


• Crying - more of this.  She hardly cried at all before.  Sometimes recently she would fuss to be fed - but not usually.  Now she has cried in pain more than I care to experience.  It is so hard to see and hear her fuss as it just isn't something she has done in the past.


• Weight - She is looking chubbier - though maybe it's just my imagination.  We visit the pediatrician today and I'm curious to see what she has gained.


• Eating - Twice she has taken 3 ounces since surgery.  This hasn't happened since January!  I'm hopeful that she will pick up quickly on this, but at the same time not wanting to push her on this.


• Sleep - She sleeps a LOT less than she used to!  She wakes more easily to noise too.  Thankfully she is still able to fall asleep pretty easily - and often on her own.  Something none of my other children did at a young age.

Some things haven't changed - like her smile!  When I had heard that some babies lose skills, I really hoped that this wouldn't be true for her.  I hated to think of missing her smile.  It just lights up her whole face.  I'm so thankful for her smile! 

Some more numbers for you.

Countless - The prayers offered up and answered on behalf of my daughter and our family. 

105 - Ml or cc's per feeding.  That's 3.5 ounces.  Enough to sustain her weight, though will probably have to go up soon.  We will have to see how her body is handling excess fluid (one of her meds).

97 - Highest amount she has eaten via bottle since surgery - and that was the DAY AFTER surgery!!!  She did 90 today and I was thrilled!

7 - Number of feedings per day.  Every three hours - and blissfully still skipping the 3am one!  Eliana eats at 3, 6, 9 and 12 around the clock. 

3 - Number of medical appointments Eliana has this week.  One with the pediatrician, one with a feeding specialist and one with her surgeon.

2 - Number of medications Eliana is currently taking.  This does not include tylenol.  She is on lasix and oxycodone.

2 - Number of holes that are repaired!!!  Just the other night a friend's child commented on the holes in Eliana's heart.  Rebecca said "She doesn't have holes in her heart any longer!"  Oh, how sweet to hear those words!

1 - Precious little girl that is already impacting the world! 

I had planned to post yesterday/last night on how much better things were with Eliana's pain.  I had cut back on her pain meds and she was doing great ... until about 9:20pm.  She cried hard for about 10 to 15 minutes before falling asleep.  Then she woke about 10:50pm and cried for an hour.  She was gassy and fussy.  I did finally get her setttled (not sure if the mylicon helped or she was just worn out!).  Sweet baby slept the rest of the night.

Still working on the photos.  The slideshow is looking weird due to the striped shirt I was wearing one of the days.  I'll try to get it fixed today.  (Or I'll see if my dh or oldest son or sweet friend can fix it as I really don't know how.)

Thank you for praying and for caring about these details. 

Love to you all,

Leslie

Less than a week ago ...

we were still facing the giant.  Open heart surgery for our baby girl!  I was waiting to be plummeted into anguish and despair.  I had been forewarned and completely understood that overwhelming fear - but thankfully it didn't come.  Oh, I was afraid, but I was also given the gift of God's peace.  I have to believe that this was the answer to many, many people praying for our family.  First though I had to walk through a hard place with Him.  I'm not saying He wouldn't have given me  peace without doing this.  I don't know.

I had to come to a place where I could say to God that no matter what the outcome, that I knew that He is good.  I had to be willing to place my little girl in His hands.  He had her anyway - maybe it was just that I had to be willing to let go.  It was completely out of my control!  Completely. 

I heard someone say that facing surgery made the story of Abraham and Isaac come alive for them.  That has never been a story that I really liked or understood.  The willing sacrifice of your own child?  How could you do that?  I didn't know if I could if put in Abraham's place.  It's really about trust.  It's about knowing who is in control.  It's about knowing that God loves my child more than I ever will.  I had to realize all of this.  All of the statistics and risks that we had to hear - and then sign a form saying that we understood them - twice.  When I handed over our precious Eliana, I imagined handing her to God.  He blessed us by having a man that took her tenderly ... lovingly ... and cradled her in his own arms.  And then he thanked me!  This was such a tender moment for me that pierced my heart.  My God loves me so very much!

I have been overwhelmed with the many people, literally thousands that have prayed for our daughter and our family.  People that have responded with love to the story of our family.  Family, friends and complete strangers that have cared enough to pray for us!  It brings me to tears just to think how much people care.  What a blessing my aching heart has needed.

Why am I feeling sad now?  I sometimes wonder if I'll always cry so often.  I haven't been a "teary" person in the past, but I'm certain I've shed tears daily since Eliana's birth and many days a flood of them.  Tears for many reasons - sadness, fear, pain and also joy, compassion and love. 

It's late and I'm tired.  I'm running on not enough sleep for far too many months now.  My parents left this morning after being here for a week.  I'm so thankful that they were able to be here with us - supporting us, loving us and caring for us physically and emotionally.  My daughter Rebecca was hit with sadness tonight too.  I just held her as she fell asleep.  I feel like my heart has been put through the wringer.  I hope that it is a better, more compassionate one now for having endured this pain.

I am blessed by your words to me.  It amazes me that my words - the raw emotion of all that has gone on in our lives - could be a blessing to someone else.  I ponder on how good God is and am amazed that He would choose to use me.  Who am I that He would do that?  I am thankful and humbled.  I have often talked with God about what I'm feeling.  I've asked Him to use all of this to change me.  I told Him that I thought it would be a real shame to walk through this heartache and emerge unchanged.  I want Him to mold me to be more like Him. 

I have figured out how to respond to posts, but wasn't sure if just answering in a new post was easier?  Wasn't sure if it would be easy for people to scroll back to comments to see answers?  Anyway I thought I'd answer some here.

Eliana is taking Lasix twice a day.  This is a diuretic which helps her to eliminate the excess fluids in her body.  She has been on this since late January to help manage the fluid in her lungs as a result of the holes in her heart.  She is no longer taking digoxin.  Digoxin is a medicine that made her heart pump harder to try to help the blood get to the right place instead of shunting through her holes.  (Due to the holes in her heart, sometimes the oxygen rich blood would be sent back to the lungs instead of out to the body or the oxygen poor blood would be sent out to the body instead of to her lungs.)

I tried giving tylenol through her feeding tube, but it seems too thick to flush due to the tiny size of her tubing.  I tried using extra amounts of water, but it didn't seem to work too well.  I didn't want to give it and have most of it just sit in her tube.  So far, it's worked alright today to alternate and just give that to her when she is awake.  She is awake so much more now!

Eliana's hiccups come on suddenly and I have no idea why.  They also end suddenly and without cause (or so it seems to me).  She has gotten these since before she was born.  They have never really bothered her in the past.  I think it's just hard on a chest that is already sore right now.  Today when she got them in the afternoon I was talking with a friend.  She prayed for my sweet girl and they went away quickly.  It's so sweet when an answer comes swiftly.

Eliana is trying to feed orally - but it's not going so great.  I've been working on trying to manage her pain the last couple of days and not willing to push her on eating.  She seems to be feeling better and with that I'll feel more comfortable in trying more feeds with the bottle.  For now, I try when she is awake for about 15 minutes or until she shows me that she is not interested any longer.  We are scheduled to meet with a feeding therapist on Thursday.  I'm hoping that as she feels better that she'll be able to eat!  I look forward to the day that we won't have to use the feeding tube!

Eliana's feeding is through and I should probably go to sleep.  Morning always seems to come so quickly.

Praying for you who are reading that you would know God's love in a very real way today!

With love,

Leslie

Better day - Sat 4/21

Dear Friends,

Thank you for your posts, note of encouragment and prayers!!!  I wish I could respond to each one of you to let you know how very much your words and prayers mean to me!  Better yet, I'd love to give you a hug!  I feel so very blessed to be a part of the body of Christ - in a way that I have never experienced in my life.  This is a sweet balm to my soul.  I thank God for each one of you - those that post, those that pray, those that have taken an interest in my precious daughter and our family.  Your words of support in having her in our home instead of the hospital are very encouraging.  Your prayers for her - and our family are much appreciated!  I am continually overwhelmed by all of the love we have received over the last 4 months. 

Today has been better for Eliana.  She was smiling, "talking" and even once tried to laugh!  Oh, have I  mentioned how very thankful I am that these are skills that she didn't "lose" and have to relearn! 

This morning, I began giving her meds every 4 hours - alternating tylenol with the stronger med.  The only difficulty is that the tylenol needs to be given orally and I can't do it when she is sleeping.  The other med I give through her feeding tube which is really nice as it definitely all goes in and it doesn't matter if she is awake or not. 

She has only had one bad crying spell today and that was  tonight around 9pm.  I fixed her a bottle of pumped milk.  The consistency is a little thinner than what she has been getting.  She swallowed and began gaggin on it - a lot.  I think it hurt her or seemed like it went down the wrong way and she started crying and crying.  I wanted to give her some "good stuff" to help her system better manage with the narcotics she is taking.  Poor baby!!!  It's hard to comfort her as I feel I have to be careful with how I hold her so as not to cause more pain with any bouncing or moving of her chest/ribs.  I often just cry and pray as I sing to her or speak softly to her.

One of the songs that I've been singing to her a lot this week is one that Joshua (7) made up just last week.  It's sung to the tune of "Rubber Ducky"

Eliana, you're the one!

You make life so much fun.

I love you and you love me.

But, bet of all we're family.

Isn't that sweet?  She seems to like being sung to.

She has also been getting hiccups - something she did even in utero.  They have never seemed to bother her, until now.  Now they hurt her chest.  I can see it in her sweet face.  Thankfully she doesn't seem to keep them for a long time, but there is nothing I know of to do to help stop them!

Please continue to pray for her pain - and for wisdom in how much of her meds to give her.  Please pray that we would hold her in a way that doesn't hurt her.  Please pray that she wouldn't get hiccups for a while.  Please pray that her recovery would be smooth and swift.

I praise God for all of the good He has done in healing my little girl and bringing her home!!!

With love,

Leslie

New prayer request for Eliana

Midnight - Thur 4/19 

This seems small compared to the other things I've asked prayer for - but my little girl has been miserable.  She has spent much of the evening off and on fussy and gassy.  I probably should choose another word - she is crying.  I hate to see her in pain - after all that she has been through in the last several days.  And of course this would start when we are at home.  I've been holding her, rocking her and trying to comfort her (off and on) for many hours tonight.  I'm thankful I'm able to do that!

She has been unable or not interested in eating from the bottle since 6am.  :-(  For this reason I don't think it's the feeding or taking in air.  She is on the same formula as before so I don't know if this is a result of something with her surgery?  I'm planning to phone one of the doctors in the morning if things aren't better.  I hesitate to give her anything without "approval" from a doctor given her heart surgery and the fact that she is on other meds.  KWIM? 

I gave her some pain meds (prescrip from hospital) and she is currently sleeping well.  I'm praying for a good night's sleep for both of us.  We haven't gotten much this week.  Please pray that we would figure this out so she isn't hurting.  It is not like her to cry and cry and it hurts my mama's heart.

I'll update more as I can.  Feeding is going to be a big issue for us.  I'm hoping we'll get it figured out soon so that we can say good-bye to her feeding tube!

Praising God for His goodness.  We are glad to be home!

Update  10:15am Friday 4/20

She slept fine through the night.  Woke at 8am fine.  By 9am (feeding time) she began to cry and cry.  Cried hard for 30 minutes!     I gave her pain med at 9am and I'm guessing it kicked in by 9:30am. 

Called her ped and we are going in at 1pm.  Please pray for my baby.  She is not herself and having her cry like this just hurts my heart - not to mention it is a little frightening after what she has just gone through.

Thank you!

 With love,

Leslie

 Update 4pm Friday

Thank you for your prayers, advice and encouragment!  I love you all!  :group:

We went to see her ped who checked her out thoroughly and feels that her crying was due to pain.  :cry:  Oh, that makes me feel so badly!  :cry:  I've heard so much about how they are trying to wean her from the strong meds and onto Tylenol only.  For now, we are going back to the strong meds and weaning a little more slowly. 

Eliana just sobbed and sobbed - both last night (and I did give her the strong med then) and this morning.  Please pray that I would have wisdom in giving her meds and in cutting back when it is appropriate.  I hate to think of her hurting. 

As an interesting note, our pediatrician called Eliana's cardiologist who told her that he was surprised that she was released so quickly.  I commented that I didn't like hearing that she shouldn't have been released.  The ped. corrected me saying he didn't say she shouldn't be released only that he was surprised that she was released so quickly.  I asked why he allowed it and was told that it wasn't his decision.   *sigh*  I really don't want my daughter in the midst of any politics and am trusting that this really was best for her.  We've had so many positive things occur this week and am believing that this was for the best too.

Our ped. did say that the upside to being home is that Eliana is not exposed to any germs/diseases/infections that she might be there at the hospital.  Believing that perhaps this is why she is home.  I'm also close enough to go in if needed.  And her care at this point is also something that I can handle.  I've learning a lot more about nursing/critical care than I ever imagined - though not so much that I don't worry and that I have all of the answers! 

Thank you for your prayers.  Please continue to pray for Eliana's recovery and that she would have no complications.

Thank you!Love,
Leslie

Thur 4/19 - We are going home!!!

It's 3 days post-op and we are going home!  It's hard to believe how quickly and well she is recovering!  Truly a miracle.  I had been told 2 weeks and was really prepared for 1 week based on discussions with other people who had been through this.  Never did I expect to be home in 3 days.  Just three days ago at this time (12:30pm) I was running into the NICU to see my precious daughter for the first time after surgery.  Oh, how I had missed her during those hours of surgery.  Oh, how hard it was to let go of my little girl - to know what was happening to her and not to let me mind dwell on it too much. 

I don't remember if I shared my fears - that she wouldn't make it.  That something bad would happen to her.  That any of the time I had "wasted" would be time I would really regret if I wouldn't get time back with her.  I was prepared for the day prior to surgery - and especially the night - to be a time of pure anguish.  I was not prepared for God's peace to cover me.  I did still cry, but not the anguish and desparation that I expected.  God is good to have covered me in peace.  I am so very thankful for that.  It didn't take away the fears, but did give me a peace in the midst of the hardest thing I've ever done.

We've seen LOTS of people this morning.  Many doctors, nurses, several therapists and more.  All think Eliana is doing great.  So many comment on how cute she is - how sweet her smile is - and what a precious little baby we have.

I feel like I've been in "crisis" mode for all of the last 4 months.  It's been a hard place to live for what has seemed a very long time.  I've missed just being able to treat her like a baby.  Just to enjoy her without worrying about how or when I was doing specific things or counting hours, minutes or volumes.  I have a notebook journaling every thing that has gone into Eliana - everything!  It's been a lot to keep up with and a means of keeping me "on my toes" and not relaxed.

Yesterday I talked with my pediatrician and she mentioned that now I needed to get started on the other things - therapies and such - that have taken a back seat while we dealt with cardiac issues.  I told her that I wasn't quite ready for that.  I just want some time to have a baby.  I just want her to be a baby.  Not a baby in heart failure. 

I shared this with one of the nurse practitioner and she encouraged me to do that.  Just let her be a baby for a short time - and then to get started.  Of course, I've since seen 2 therapists who encourage much more immediate action.  I'm sure that I'd feel guilty not doing anything too.

I'm not really sure what to do now.  What is my next step?  I know that the next couple of months that I'll still have to keep a close eye on Eliana and her care.  Hopefully more and more things will normalize - or get to a normal for us.   I know that recovery will still be a challenge, but hopefully without all of the worry.  Feeding is our next big hurdle. 

I am so thankful for your prayers and encouragment.  I would ask you to continue to pray as you feel led - while Eliana is in recovery and beyond.  I'm a little nervous and feeling like I'm stepping out into the unknown.  Nobody ever said parenting was easy, but the rewards are without measure!

We do have more photos.  I'll see if some are ready to post before we leave the hospital.  Eliana is finishing up her tube feeding and then we are going home!!!  Thank you for walking this with us, for caring about us, for praying for us and for wanting to be a part of our lives. 

With love,

Leslie

Wed April 18 - 2 days post op

Wow! Another busy, busy day! Thank you to those of you that have been praying for our precious daughter! I am going to try to recap our day and remember the highlights of all that has happened. My heart is continually boosted by the outpouring of care and love for my little girl. She seems to draw people’s hearts to her which I love to see.

The blood draw did not happen in the middle of the night, though I was awakened about 4:30 by Eliana crying. I was VERY surprised as I don’t remember her waking up at this time ever. Maybe as a newborn? Definitely not in the last 3 months.

I picked her up and tried to console her. She was just crying. The nurse came in shortly after that with meds. I was surprised, but she said she had been taking her vitals and obviously awakened her. Once awake, it was clear she was in pain. Poor little honey!

I went to sleep after getting her settled. Woke again about 6am when the nurse had come in to feed Eliana. She had asked last night if I wanted her to do one of the feeds and I thought this one would be great! She had her laying in the crib taking her bottle. I told her that I usually held her more upright, but she was doing it this way to give her more chin and cheek support. Fell back to sleep and was awakened shortly after 7am when a cardiac fellow was making rounds. He told me we would be seeing Dr. Jaggers (her surgeon) later that morning.

Eliana started to fuss again. (This was shortly after the ending of her tube feeding.) She had a bm which I changed and then she spit up a LOT! I tried to hold her upright to help her get cleared and also suctioned her mouth. She was really having a hard time. She then fussed and fussed. It wasn’t time for her meds yet and I wasn’t sure if she was in pain or not. I held her, rocked her and sang to her. One of the nurses came in to check her vitals and commented on the condition of her arm. I told her she was scheduled for more bloodwork and she immediately said that she was going to pray for her! I told her that many, many were praying for our little girl and it had made a world of difference.

During this time the gal doing the bloodwork came in. I asked her if she had been warned about Eliana being a hard stick. She hadn’t. I told her that she had many, many sticks (today I counted 11 in just one side of her groin!). When she said that she was just doing a heel prick, I told her that the techs had difficulty with that too. She warmed her foot and then had a great stick! Her heel bled freely even! Thank you for this answer to prayer!

Several of the doctors made rounds and spoke with me. Eliana is doing well and they hoped to remove some of her monitors today.

Roger came up this morning. I am glad he was able to be here today when there is a lot going on and a lot of information being shared.

Just about 9am someone arrived for Eliana’s chest x-ray. It was time for a feeding, but we decided to wait on it. I sat in a wheelchair holding Eliana while we were wheeled to the lab. She did fine - again - with this procedure and didn’t mind it at all!

When it was over, the lab tech told us that she should not be fed via tube until it was inserted another couple of inches! Yikes! The bottom of the tube is in the stomach, but the side ports are feeding into her esophagus. This could likely have been why she spit up and why she was so gassy. I’m so glad that we found this out here! It also helps explain the troubles one nurse had in finding the signs for correct placement. She thought it wasn’t in and that we would need to redo it. When we got back to the room, the nurse took off the tape and pushed the tube in further.

I took a short nap in the morning and was awakened when Dr Jaggers came in. He mentioned that this was a personal visit. (I love that they do this!) He removed her bandages and said she looks great. He said she could wear clothing and didn’t need any special care for her wound. We are scheduled to see him again next Friday. He also commented that Eliana was a favorite in the ICU. (It touches my mama’s heart when I hear that others love, enjoy and appreciate my little girl!) We took a photo of Dr. Jaggers with Eliana. He tells us that we should be home by the week-end! Probably tomorrow (Thur) or Friday. Truly amazing! I can’t believe how quickly she is healing from open-heart surgery!

Now it is time for another sedated echo. She is asleep at this point and we are again wheeled up to the lab. She wakes while there. She is given the choryl hydrate sedative and does much better with it this time. We talk with the 3 nurse/lab tech in there and ask a lot of questions. We are able to see the patches on her heart! Isn’t that amazing! It looks like there are 2 patches on each of the holes. I even have an u/s picture. Not nearly as cute the typical u/s picture, but still pretty neat!

One of the gals comments on how that though Dr Jaggers is a man of few words that he is one of the most compassionate men she has even known. It is clear in the specialty he has chosen that he cares greatly for children. I loved hearing this about him as we really haven’t had any time to get to know him. The echo is good! There is some regurgitation from the valve that had to be cut to repair one of the holes. This is not a concern and hopefully will just improve with time. She will continue to have echos over time to monitor this and the other repairs. The repairs on the holes look great! No portions of holes remaining or leaking there at all! Praise God!

Our sweet baby girl is finally really sleeping. She has had a long and busy morning. She waits awhile for her next feeding due to the sedation meds. She doesn’t wake for it and we don’t try to wake her. She is still sleeping peacefully in her bed.

One of her the echo techs today asked if it was good to be on this side of surgery - most definitely YES!!! It is so much better on this side. I didn’t share how on Monday after we had handed Eliana over and gone to the waiting room I began to have chest pains. The pains were sharp and on my left side. I prayed for them to pass and tried not to succumb to the fear that went with them. All of the worries, doubts and “what ifs” that can plague your mind. When the fear is about one of your children - how very compounded it becomes. I’m not sure I can ever explain how very painful and difficult it has been to have my child struggle so much and to be in heart failure for months. Or the fears that she wouldn't make in on numerous occassions. 

I have been driven to my knees so many, many times - for my daughter as well as others who have walked or are walking on this path.  On the days leading up to surgery and especially on the day of surgery God’s peace which passes understanding was very real to us! I have never experienced His peace like this before.

I praise God for all that He has done - in my daughter, in the people He has placed in our path and in my own heart. I am so thankful to have more time with Eliana.  While this road has been so very hard - and still hopefully has many miles on it - I can now with tears of joy say that I am thankful to be walking on it.

With love,

Leslie

PS Thank you for all of your comments and prayers!  I sometimes wonder if I'm sharing more info than is helpful.  I know that it helps me to write it all out.  Hopefully more pictures to come later tonight.  I know that for me I am visual and seeing pictures helps to understand more than just words alone.  The seriousness of the surgery is so very obvious when you see her post op.  She is looking better each day though!  I LOVE seeing her smile!  It just lights up my world. 

Photos from day of surgery

I decided to try a new post for photos.  These are of the day of surgery.  Several of Eliana, one with the 2 anesthesiologists and the rest are post-op. 

*****WARNING******

Some of these photos are difficult!  Please view them prior to letting any children see them.  I remember well the first time I saw a photo of a child post-surgery it took my breathe away.  It was so hard to see - though perhaps for me it was because it was the future for my little girl.  Perhaps this will be easier knowing Eliana is doing so very very well!

The first 5 photos are pre-op.  The last pre-op photos is Eliana and I with the two anesthesiologists.  The one just following this picture shows her hooked up to a lot of things.  It was this one that I thought might be hard to see.

This is a slideshow and I'm hoping this link works.  If not, I'll try to fix it tomorrow.  (Let me know if it doesn't work.)

http://s176.photobucket.com/albums/w187/rogernelsen/?action=view¤t=1176814618.pbw

 Love,

Leslie

Prayer request

I'm not sure who will see this - but hopefully some of you will!  It is currently about 11:45 EST.  The nurse told me earlier that they will need to do a blood draw tomorrow.  *sigh*  My sweet precious baby is a VERY hard draw.

For her surgery, they were not able to get IVs in - or not enough - and the surgeon had to cut her little wrist to put in the IV.  I can see where she has been poked ALL over her little body - feet, wrists, hands, neck, groin - some multiple times and sides.  Even today her new IV was put into her head.  I'm not sure where she has left to poke.

I've asked the nurse to please find out if they can find the BEST person available for doing the blood draw.  Please join me in praying for this.  I am praying for a successful FIRST stick on her so that they don't have to try multiple times.

Also, could you pray for her pain.  She woke up at 9pm and just wasn't herself.  I realized that her pain meds had worn off and asked for more.  She fell asleep shortly after that without eating any from the bottle.  She has been sleeping well since then.

Still working on adding  photos.  Thank you Leanne for your offer of help.  I'll send them to you if I can't get them here!  I'm not going to try too long - just haven't had time to get to it.

Gotta go - her IV has come out!  Please pray

ETA:  Update at 1:00am  Then nurse completely removed the IV from her head.  I held gauze on the site to help stop the bleeding.  She cut some of her hair to try to remove the bandage.  (It was taped pretty well to her hair - had come loose from her head.  We think that is why it came out, but also could have been from me moving her around.  Even though I tried to be careful it's tough with so many leads comeing from her - 7 - which is MUCH less than yesterday!)  The nurse asked if I minded her cutting her hair to remove the bandages and I told her to do what she needed to do.  She cut a little as she was trying to get to the IV and stop the blood.  Then she worked to just remove it from the tape so Eliana wouldn't have a big chunk of hair missing.  Isn't that sweet?!

I hated the thought of them having to reinsert an IV.  There just isn't a place that hasn't been poked unless there is a spot on the other side of her head?  When she spoke with one of the doctors, she said the IV didn't have to go back in!  She is to get her meds by mouth and hopefully is well-hydrated since she is getting her feeds now.  Praise God!

Thank you for those of you that saw this and prayed!  This was a great answer.  Still praying for the next blood draw!

Tues 17 April - 1 day after surgery

***I've written this and updated it several times.  I'm finishing the entry now at 8:15 EST.  If I add more here, I'll change the time. 

I've spent hours trying to find a moment to update ya'll, but it's been just too busy!  I was thinking earlier this morning that I would just do one entry and add to it as the day went - maybe making each new entry a different color.  Well, it looks like you are going to get  LOT of news at once!

Roger and I drove over to the hospital around 10am - later than I had hoped, but it's always hard to get out of the house.  I had called to check on Eliana and heard that she was doing great!  They told me that she had the chest tube removed by her surgeon.  This is great as they kept telling me that it was painful for her.  She also had her catheter removed and her arterial line removed.  I was told that she would probably be moved to a room today as they needed the bed space for another heart baby.

When I arrived they were trying to put in another IV so that they could remove her central line.  This needed to be done before she could be moved to a room.  I waited while they put this in and Roger joined me in the waiting room.

When we were allowed back, we were warned that the new IV had been put into her head.  (Not surprising since they apparently tried almost every other place yesterday in an attempt to put in an IV and then resorted to the surgeon doing a cut-down.)  They covered the IV with 1/2 of a small cup - and her pink bow!  It really helps the look.  She had been moved to a private room with a new nurse just for her.  I wish we'd had this yesterday so we could have spent more time with her. 

The nurse asked if I minded being there while she removed the central line from her groin and inserted her feeding tube.  I told I didn't mind at all.  I didn't have to look if it bothered me.  She had been given 2 doses of morphine this morning for the removal of the chest tube and insertion of the IV so she was a little groggy.  As the nurse was removing the stitches from the central line she asked if I was a nurse.  LOL  No, just a mom that has had to learn a few new things over the last couple of months.

Eliana's vital signs were good.  She is still on oxygen and her sat levels are high.  (good news)  We were told that she would be moving to a regular room this morning instead of a step-down room.  (Lower nurse ratio on the regular floor.  We were also assured that the move was because she was doing well, not because they needed the room.

Our pediatrician called while we were finishing up in the NICU.  She commented that Eliana was making this "look like she had gone in for a wart removal".  It's amazing to me how well she is doing!  When they readied her bed, tubes, machines, etc, Eliana was wheeled down the halls to the pediatric ward and her room.  Because she has a bigger bed, there isn't a regular bed for me, just a pull out chair.  It will be fine as I'm just happy to be with her!

So many people and so many comments I want to remember and share!!!  I'll do my best here.

We saw a doctor shortly after arriving in our room.  She talked about how Eliana was doing very well.  She had heard about how cute Eliana was from another nurse.    She was encouraging and kind.

It's 6:20 now and I will add to this later.  Need to go try to feed my little girl.  Bottle too warm so I'll add a bit more.

So many God moments today.  Again so much evidence that He is working all things out for good - above and beyond what we have expected!

One of the anesthesiologists stopped by.  What a surprise to see him!  I shared with him how I appreciated how nice he was to us.  He commented that they were always nice.  I shared with him my memories of how tender, calm and kind they were with both Eliana and us.  Of the memory of them walking of with her and how it helped to start a really stressful time in a positive way.  He said that he appreciated that and that though he hadn't experienced this that he did his best to help.   I know that God placed these men in our lives and am thankful for them!

Met with a second doctor.  When she walked in, she asked about the church we attended.  We confirmed it was the one she asked about and she shared that she had been in church on Sunday when they prayed for Eliana!  She told me that she had ordered another echo for Eliana.  She had one yesterday after surgery and her heart looked great!!!  I asked if she would have to have a number of echos while she was here.  She replied that she needed one more before she went home.  I then asked if we might be going home tomorrow.  She said that possibly tomorrow or the following day!!!  I was shocked!  She is definitely on the fast track!  What a miraculous healing is occuring in our little girl.

An OT (Occupational therapist) and speech&feeding  therapist came by at 3pm to help with her feeding.  This was to be her first oral feeding since surgery.  I told her that prior to surgery we try oral feedings if she is awake.  She will take on average 1 ounce.  Often less and very infrequently more.  She took 2 ounces!  She was really hungry too.  She started coughing some during the feeding - a productive sounding cough.  She clearly has some fluid in her lungs which they said was normal after surgery.  They also recommended she get speech/OT therapy started.  The feeding recommendation for now is that I try to oral feed her every three hours (still skipping the 3am!) for up to 30 minutes then give the rest via tube.

Roger went home and brought the 4 oldest children up to visit their sister.  They were all glad to see her and very curious about all of her lines, tubes and "owies".  I am glad they were able to see her!  She even smiled her first good smile at Christopher!  It was soooo good to see that!  I have prayed for her smile and missed seeing it.

While they were here, Roger ran into our cardiologist in the hallway.  He did a double take as he was surprised to see Roger here.  He wondered if he was here because the surgery had been cancelled yesterday and was very surprised to hear that she'd had her surgery and already been moved to the floor!  He came into to visit with us.  Talked to Rebecca about her bracelets.  I asked a question (dont remember what it was) and he told us that this was just a personal visit and not a professional one.  I love our doctors!  Isn't it neat that he would just visit with us!  He again told us that he thought we'd get out of here faster since we are local and it's easier to follow-up with Eliana and also because we have already done the feeding tube. 

Eliana's 6pm feeding was great.  I woke her up and was surprised she was ready to eat.  It's been a long time since we've had to wake her to eat - and then she usually didn't want to.  She took 98 ml - that's just over 3 ounces!!!  Almost her complete feeding.  Only 8ml by tube.  Oh, happy tears I cried as she was eating and eating and eating.

Prayers for now would include the following:

• Continued recovery for Eliana in all areas and that she would remain healthy!


• Ability to breathe and have good oxygen levels without an oxygen pump.


• Ability to eat well orally and maintain good oxygen levels while doing this.


• Wisdom for all of her care givers.


• Wisdom for us as we try to ask questions and learn all that we need to know about Eliana's care.


• Health for our family. 

That's all I can think of now - though this is probably long enough!!!  We have some photos that I will try to figure out how to link.  They are all from yesterday.  Some are pre-op and others are post-op.  Please be warned that some of the pictures are difficult!!!  Especially if your children are viewing with you. 

Thank you so much for your continued prayers.  It has made a huge difference and I love being able to share with people here the goodness of God in the midst of all that Eliana has been through.

With love,

Leslie

It's 10:45pm

Can it really still be the same day?  Even tonight my 7yo commented that he hadn't seen Eliana for 2 days.  I told him that he had seen her last night and reminded him of how we had prayed over her.  He said it felt like a lot longer.  Boy, did I agree!

Tonight is hard.  My Mom and I drove back over to the hospital to visit Eliana tonight.  When we got there we found out that the other baby in the room was having a "procedure" and we couldn't go in.  I was so sad to hear that.  The nurse told us that it would be at least an hour.  It was already about 8:30 or 8:45 at this time. 

I asked how she was doing and the nurse said she was doing great!  She thinks that she'll be moved to the floor tomorrow!  For this reason, she encouraged me to go home and sleep.  I want to sleep, but I also want to be with my baby!  I've never had to leave a baby before.  At least when she was in the NICU I was in the same building and could go in ANY time I wanted to.  The PICU is very different - maybe too that it's a different hospital.  I really don't know.

The nurse told us she would let us go in to see Eliana for "1 minute" if we wanted.  I of course said yes!  She had Mom and I put on masks and then we went to see our little girl.  She was asleep and looked well - well, as good as it gets following major surgery and with many tubes and wires still attached!

I stroked her skin & hair and talked with her.  I wanted to kiss her, but the mask made it difficult to do this.  Our visit was very short - much too short for me.

I miss my little girl!  I want to hold her and love on her so very much.  My 7yo today told me that he thought he probably missed her more than I did as it had been longer since he's seen her.  Sweet boy - sweet thoughts - but I don't agree with this statement.

So many thoughts swirling through my head.  Exactly 4 months ago we welcomed this little girl into the world.  She was in ICU then too.  My emotions were a complete wreck!  I wish I had started this blog then as the struggle was overwhelming to me then and it has helped greatly to write and share my heart.  I was so overcome with grief over the struggles and difficulties that we were facing then and going to face in the future.   How I have grown to appreciate so much about our little girl that I love so very much.  She is a precious gift!

Roger saw the attending anesthesiologist (Dr. Schulman) again this afternoon by chance.  When he recognized Roger he broke into a big smile and said "She did great!".  He and the other dr were a sweet gift this morning.  I have a very vivid image of the two of them taking my little girl.  Dr. Schulman thanked me for letting him have my little girl when I placed her in his arms.  He conveyed that it was a privilege for him to be taking my little girl!  He seemed to really appreciate how precious she is to us!  The two doctors then turned to walk to the OR.  Dr Schulman had Eliana cradled in his arms - just the way that I hold her.  I watched them walk down the hall talking to each other in an easy comfortable way.  All the while, I could see my precious Eliana's head and her hair bobbing with each step.  I remember watching them walk towards a window as the day was just beginning and then turn the corner toward the OR.  I remember wanting this image to be saved in my memory.  It was a calm, sweet departure.

I ran into the surgeon and nurse practioner outside of Eliana's room this afternoon.  I asked how she was doing, though they obviously had not yet been in her room as I was just leaving it.  They both thought she was doing great!  I also saw the other anesthesiologist in the hall and we exchanged smiles.

I found out that Eliana was on the heart-lung bypass today from 8:50 until  10:15.

We continue to be blessed by friends - one who arrived shortly after we did today and spent most of the day there with us.  Her dh took off from work so that she could be with us!  This is a gal that I don't know very well - yet.  Her children have had multiple surgeries and she really understands the stress of it all and was willing to be there for us through it all.   She frequently stopped to pray over specific things and to offer praises too.  She was watching Eliana as I was talking with her this afternoon and said "Did you see that?  She tried to smile at you!".  I didn't see it and am so glad she did. 

I'm so thankful for the friends that were able to be with us physically today bringing food, comfort, hugs, tears, praises and laughter too!  It made the day much easier having support right there.  I'm thankful for my parents for being with my other children and having a fun day with them.  I'm thankful for the many, many, many who have prayed for us so faithfully.  It continues to warm my heart to know that so many care about our family.  How amazing is that?! 

I could go on and on with my thank yous.  I don't think I'll ever be able to adequately express them.  Just saying thank you seems too little.   I hope all of the people that have reached out to us - family, friends and people we don't even know - know how very much it means to us!!!  Each gesture, email or prayer.   I have often not been able to respond though I thank God for people often in my prayers.  The body of Christ has been fully at work and we have been so very blessed to see it in action. 

Please continue to pray for my little girl.  Pray for my mama's heart that misses my baby.  Pray for health for our family.  We are hoping the children will be able to visit her soon.

If you have emailed me, I've not been able to check for the last 2 days (since my laptop stopped), but will check as I am able to.  Hopefully tomorrow.

Thank you precious friends for standing with us!  I'm going to sleep now for hopefully a full night's sleep.  It has been a very long time since I've had that and hopefully I'll be able to sleep well.  Will post more tomorrow as I can.

With love,
Leslie

ETA:  I've spent far too long typing.  Wanting to thank people and not wanting to leave others out.  I am so thankful for each of you!

I just called and spoke with Eliana's nurse.  She is doing very well.  When she wakes, she is fussy and they continue to give her pain meds.  She told me that the chest tube is probably pretty uncomfortable.  Hopefully she will be able to have removed tomorrow.

Her O2 levels are great - 99.  Heart rate and other vitals are good.  I asked if anyone had been able to hold her and she said no due to her chest tube.  I'm hoping and praying that if she needs held that the sweet doctor I met earlier will be there to hold her.

Really going to sleep now. 

Late afternoon update

Hi Friends,

Wanting to update you a little more on Eliana.  She is in a critical period now - and we will know much more about her recovery tomorrow.  Please keep praying for her!!!

I have seen God's hand on this day and on so many things that have happened.  I will try to write some of that when I'm able to.  I appreciate prayers and know that it has paved the way for so many things to go so smoothly for Eliana today.

When I was with her this afternoon, she seemed to be having some difficulty breathing.  The nurse told me that she was fighting the tube.  She then started to wake up some and then started gagging.  They decided to remove the breathing tube and we needed to leave the room. 

She looked so much better with the large tube out of her mouth.  It was replaced with smaller nasal tubes for oxygen.  The nurse put the clear tape on both cheeks - and nothing yet on the hurt places.  Please pray for healing for her skin. 

She woke up again when we went back to see her.  She started crying.  A really, really pitiful and weak cry.  It hurt my heart to hear her as her voice is very  hoarse.  I couldn't pick her up which I so wanted to do!!!  There are limited places to touch her too.  I tried stroking the very top of her head and getting close to her face. 

One of the nurses suggested a pacifier.  We tried that, without much success.  I told them she really prefers her hands (which aren't an option right now).  They brought something to dip the paci in to try to help her, but she wasn't all that interested in sucking. 

The rounding doctor came by and ordered more pain medicine for her which helped greatly and allowed her to go back to sleep!  The dr commented several times on how cute Eliana is.  She also said that she would love to hold her - if I didn't mind.  I told her that I would love to know she was being held as that is her preferred method of being comforted!  She told me that she likes to hold the babies while sitting in a recliner during the night.  I told her that I would feel much better about leaving Eliana there during the night without me if I knew that someone was holding and loving on her!  (What a sweet praise that this doctor wants to do that!)

I was very blessed to have sweet friends join us today - to talk, laugh and best of all pray!  To notice what the details of what was happening and to pray for problems and to praise God for the blessings. 

Need to run.  I'm home for dinner and then off again to the hospital.  I'm planning to come home to sleep tonight.

Thank you so very much for your prayers.  Please keep praying for her recovery.

With love,
Leslie

Just saw my baby girl!

We walked up to the PICU about 12:30 and asked to see Eliana. We were able to go right in! I heard these words and went as quickly as possible to the doors. I hurried in and then paused to find out her room number. When I was told I half ran to her room. I just wanted to see my baby girl! She looks so very tiny in such a big bed.

It is so good to see her. It hasn’t been that many hours - 5.5 hours - but it seemed like forever to be away from her. She has a LOT of wires/lines attached to her - several IV lines, a catheter, a chest tube, a breathing tube, ekg lines and more. It was hard to find a place to touch on her and kiss her - but I found them! I can’t resist touching and stroking her. I even added a pink bow to her hair.

She is still heavily sedated. The nurse said that she is doing well. They hope to remove the breathing tube later today. The chest tube may be removed tomorrow depending on how she is doing.

I’m so very, very tired. It seems like a long, long time since I’ve had a full night’s sleep. A lot of stress in these last 4 months too! I may go home or to a friends house to take a nap. It’s hard to think of leaving my baby. As a mom, don’t you always put yourself and your own needs last? I do plan to get some sleep today. I’m so very relieved that this part is over!

Please continue to pray for Eliana. There are still risks of complications. We’ll know more by tomorrow morning how things are looking - but so far, everything looks great! Please pray for healing, health and anything else you feel led to add.

Thank you sweet friends for your prayers and words of encouragment!

With love,

Leslie

Holes are repaired!

We just spoke to the nurse practioner who has been in with Eliana during the surgery.  She said that all has gone well!  Her holes are repaired!!!  (I need the emoticon with many happy tears here.)  They are still working on her - chest tubes need to be inserted and all that is involved with closing her up.  We are hoping to meet with her surgeon, Dr. Jaggers in about 45 minutes or whenever the surgery is complete. 

After we have spoken with Dr. Jaggers, Eliana will be moved up to the PICU.  It will be about 1.5 hours until we will be able to see her then.  I really want to see my little girl.  I've been holding onto her hair bow and really just want to hold her.

Thank you for praying.  Please continue.  I'll write as I know more.

With love,

Leslie

 

 

Surgery started at 8:45am

We just received word that surgery has begun and all is going well.  Will continue to update as possible.

Love,

Leslie

Update at 7:30am

Hi sweet friends,

We are here at Duke.  Our morning started at 5:30am - 30 minutes later than we had planned as we slept through the alarms.  Thankfully we woke up then!  We quickly got ready and said good-bye to Rebecca and my mom.  Our 2yo woke up as we were leaving so Rebecca went to be with him.  I think that this may have been a gift from God to her.

We made it to Duke at 6:17 - a few minutes late.  It was fine though as we had to wait to be checked in.  We went back to the pre-op.  Eliana was checked - oxygen (96%), bp, temp (low and hard to get a good reading).  They were concerned about her temps so we had her wrapped in warm blankets after dressing her in a tiny hospital gown. 

Then one of the anesthesiologist (sp) came in to meet us.  He is very nice.  Shortly after the attending anesthesiologist also joined us.  He is also very very nice.  They explained what would happen.  They told us that they would lower her temp to 30 so her temps weren't a concern.  They are also going to try to use some adhesive that will hopefully not irritate her skin any more than it already is.  One of the drs said "we'll fix her heart today."  The other doctor thanked us for letting them have her.  I could tell that they both enjoyed children.  So very nice.

We handed her over and they carried her down the hall.  I watched the two of them talking and could see Eliana's sweet head - with her hair sticking straight up - as they went to the OR.  We weren't allowed to go with her to OR due to her age.  She was fine being handed over to them.

We are out in the waiting room now with 3 of our friends.  God's peace is so very evident.  Thank you all for your prayers.  Will update again as possible.

Love,

Leslie



 

Today is the day!

One last time of looking at the ticker and seeing the days count down.  0 days.  It's time.  April 16th - a date I will likely never forget. 

Oh dear friends, I can tell you have been praying!  I feel it in my very soul.  My heart and spirit have been calm today beyond anything I could ever have expected.  I know it isn't me but my precious Lord.  Thank you faithful friends!!!  I wish I could hug and respond to each one of you.  I appreciate so very much your love toward our family.  I am moved to tears every time I read a note, a prayer or a special effort for my family.  I am so humbled that you would do this for us!

I am trying not to think on the specifics of what is going to happen.  When I do I can feel fear start to crowd in.  My mind starts reviewing the "risks" and "statistics" and I start wondering if my precious baby is going to die.  I just don't want to think on this.  I can't.  Oh, I am so very thankful for my precious little girl.  She is in my arms right now.  Sleeping so peacefully. 

One additional thing to add to your prayers is for  Eliana's skin.  She is really reacting to the tape we have used for her feeding tube.  It was a mild irritation at first, but has really gotten bad over the last couple of days.  I switched sides for her tube on Fri as it was looking irritated.  The side that it has been on since is very irritated - red and even "crusty" in spots.  I removed her tube after her last feeding to give her skin some time to try and heal.  I know though that it will need to be covered again soon.  Please pray that they would be able to use something that wouldn't hurt her.

It's about 2am here.  Yes, I know I should be asleep.  I am tired, but who can sleep?  We'll be getting up at 5am and leaving around 5:40.  We are to be there at 6:15am.  We will need to check in and do some pre-op things - vitals, meet with the anesthisiologist, sign another consent and hand her over.  I was told we would not be allowed to take her back to the OR due to her age.  Then we will wait.  The prep for surgery can take about an hour.  She will have numerous IVs, tubes, etc to get placed and started.

Eliana has had her last feeding before surgery.  Can you pray that we won't experience delays so that she doesn't get hungry.  And that if we do have delays that we will be able to give her some clear fluids. 

We have several friends joining us tomorrow while we wait.  My other children will be home with my parents.  I am thankful for all of the support we have - here close by and many others from afar.  What a gift you are to me and my family! 

We are planning to take a laptop with us and will try to update as often as we are able to (if we can get a connection). 

With much love,
Leslie

Packing and preparing

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

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

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

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

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

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

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

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

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

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

With love,

Leslie