One year ago today ... April 16, 2007 ... a date to remember!

***Photos included that may be difficult for children if you have some watching/reading. ***

One year ago, our sweet Eliana's heart was repaired!  We praise God for His faithfulness in walking us through this valley.  We are thankful for our family and the many friends he placed in our lives that helped to ease the pain and difficulty with prayers, words of encouragment and acts of service. 

One year ago, so many people were praying for our little girl.  Some of my friends were fasting while they prayed.  Friends on the FIAR board (my homeschool community) set up an around the clock prayer calendar for Eliana.  I was humbled and blessed immensely that people cared so much for our little girl.

One year ago, we slept through our alarm!  How could that happen on such an important day?  We rushed to get ready and get to the hospital so very early. 

One year ago, we handed our little girl over to two very kind men (the anesthesiologists).  I remember watching one of them cradle her in his arms as he gently carried her down the corridor to the surgical room.  The sun was coming up in the window in front of them and they looked so relaxed and calm.

One year ago, I had to hand over more than my daughter.  I had wrestled with God and felt that I had to come to the point that I was truly willing to hand her over to Him.  The story of Abraham and Isaac become more to me than just a story.  I knew that God had given us a gift - yet she was still His child.  Ours to care for and to love on for an undisclosed amount of time.  "Yes God," I said, "She is yours.  I do so want more time with her."

One year ago, I held onto a little bow waiting for news of her surgery.  I had expected to be broken and devasted, but God met me there and gave me His peace that passes understanding.

One year ago, Roger and I, along with some dear friends sat waiting, praying, talking ... and just waiting.  Anxious to hear news and yet fearful to hear it as well.

One year ago, I so wanted to hold my little girl.  Waiting to hear the news was hard.  What a joy to meet with her surgeon and to hear that all had gone well.  When we were finally allowed to see her - I remember running to her room.  I should have waited, but could think of nothing but seeing our baby. 

One year ago, our baby's heart was made whole.  It was hard to see Eliana with so many tubes and wires.  Hard to find a place to just love on her.

One year ago, I continued to see God answer prayers for Eliana's care.  I watched her heal rapidly and was so very thankful to see her smile again.

One year ago, the end of a very difficult and dark time in our lives was marked by a healed heart.  This didn't mean that things suddenly become easy or without pain or trial.  Not at all.  I know that those who have experienced something similar though will understand these words ... It's so much better on the other side of surgery!

Today as I reflect and remember I am overwhelmed with thankfulness.  I am thankful that Eliana has had no complications from surgery.  I am thankful that she is growing, learning and progressing in so many ways.  I am thankful for a beautiful little girl that has taught me so much about trust, faith, love and acceptance.  I am thankful for a loving God who truly does give good gifts!

With love,

Leslie

PS  I may write more later, but wanted to share something on this special day.

 

One Year Ago ...

We were facing something that was so big. It had been looming over us for months and the day was almost upon us. It was the day prior to Eliana’s open heart surgery.

Has it been a year already? In some ways the time has gone quickly, but in others it seems like so much longer. This has been the hardest time of my life – and yet it has also been filled with some of the sweetest times of my life as well. There were many, many times when I wondered if life would ever be good again as I was so overwhelmed. I wondered if I could ever be thankful for this path. I am grateful to say – YES! I am so thankful to have walked this path with our precious girl. I couldn’t answer any other way because any other path would be one without our beloved Eliana. Her very name is filled with such meaning ...

Eliana Joy – My God has answered with joy

I just read my blog entry from a year ago.  Here's a link if you want to see it.

Blog from April 15 2007

Not surprisingly, it made me start to cry. We’ve come a long way. We saw our ped today – she is such a gem. I reminded her that tomorrow was 1 year. She asked if I were going to look at pictures. I told her yes, I was planning to remind myself of all that I could from that day. I often do this with very significant events (like the birth of a child).  I think that though it will be hard to see the pictures, that it is good to remember. It’s good to give thanks for the many, many blessings.

I will write more tomorrow as I reflect on that day. The day of my daughter’s healed heart.

I’m not sure what we will do as a family, though I’d like to do something special to celebrate this day. I want my children to remember the blessings – not just of this day – but of this time in our lives.

With love,

Leslie

Did you notice the ticker?

The little heart one under Eliana's photo at the top of my blog?  I put that on there last year as we were counting down the days until her heart surgery.  Open heart surgery.  Oh, how those words were hard for a mommy to hear!  It's hard to explain how difficult it was to wait ... and wonder ... and pray. 

I have been blessed abundantly by friends and family that prayed and encouraged me.  Just one year ago today Eliana had her pre-surgery day - tests, questions, forms, and meeting the surgeon.  It was a full day.  I should go back and read my blog entry from that day.  Here is the link if anyone else wants to see it.

The night before pre-op

Pre-op Day

I'm so very thankful to be on this side of surgery.  So very thankful that all went well and that Eliana has recovered beautifully.  I've often said that this is not something that I would have chosen, but I'm thankful for the lessons I've learned and would not want to give that back. 

Thank you God for healing my little girl's heart.

I'll try to post more tomorrow on our week-end.  We had a fabulous trip and experienced a lot of neat things.  Eliana was a super traveller too.

Blessings,

Leslie

Happy Easter ... a little late

I know - it's been almost a month.  I did want to post and share some pics though and better late than never, right?!

We visited our dear friends in Virginia for the week-end.  We have shared many years of Easter activities together (egg hunts, and other fun times).  Since we are no longer able to pop right next door, this was a fun extended time of being together.

We made resurrction rolls.  This is a great way to explain the resurrection to young children and is an activity we've been doing since Christopher was a very young boy.  You take a marshmellow to represent Jesus.  You dip the marshmellow in butter and then cinnamon sugar to represent the oils and spices that were put on the body for burial.  Then you take a crescent roll and wrap it around the marshmellow.  This represents the tomb in which Jesus was buried.  You then bake them.  (Make sure your seals are really good on the crescent rolls or it will leak.)  When you take them out, the "tomb" will be puffy and inside it is empty - obviously representing the empty tomb.  It's a neat visual for young children - and a tasty treat as well.

We also had an egg hunt.  The tall grass made it a fun challenge.  When Daniel had finished finding his eggs, we hid them again as the search is most of the fun.  Well, the eating what's inside them is fun too.

I just liked this photo of Christopher and Eliana.

This is a photo of us all dressed up after church.  It was bright and I know I'm squinting.  It isn't the best photo - but it's the only one we have.

 

I like this photo of the kids better. 

Eliana is wearing a dress that my Mom made - for Rebecca.  I love seeing her wear things that her older sister has also worn.  We've waited a long time for a girl to wear this again.  We have quite a few beautiful dresses made by Nana for Eliana to wear. 

We also made cookies and decorated them.  It is fun watching them display their own ideas and creativity in making designs. 

Daniel

Isaiah

Joshua

Rebecca

We had a wonderful time with our sweet friends.  I'm thankful that they are close enough to visit - though still wish they were right next door. 

Tomorrow the children and I are leaving for an overnight field trip.  It's our first since Eliana was born.  I'm excited and a little nervous.  We'd love prayers for travel safety, sleep (it's a lot to sleep in one room) and good weather would be nice too.  I'll share more when I return - as well as photos from our last field trip when we went flying!

Blessing to all of you!

Leslie

Time for a photo!

It has been awhile since I posted a picture.  This one of the kids and I at one of our FIAR group field trips in March.  We were at Harris County Lake Park.  The older children had a class at Shearon Harris Nuclear power plant.  The fun thing is that it was taught by a former homeschool mom (that even used our curriculum)!  Everyone learned a lot and found the hands-on exhibits fun and interesting. 

While the older kids were at the power plant, the younger children had ranger led classes at a nearby park.  These were also experiential including games, facts about animals and going on a short hike. 

It was a cold, but beautiful day.  We stayed for a picnic lunch and the day warmed up.  The kids played on the playground equipment, exploring the park and played kickball on a large field.  I loved having a large span of time to just relax and enjoy my friends and family.  Our family stayed with another family until dinner time.  It was a fun and relaxing day for all of us. 

More on healing

I've been pondering things this week.  Some of it heavy.  I was personally struggling with the loss of our little one.  Reminders seemed to hit on a day when I was emotional anyway (ladies know what I mean).  It's only been a month and the physical reminder was one that just served to emphasize the loss.  (I hope this makes sense as I'm trying to be discreet.)  I just need more time to mourn the loss of this little one that I loved even though we've never met.

I've also cried for other families this week as they mourn the loss of a child that they have known and loved.  Three different families with a sick child who last their battle this week.  Prayer requests for this child for health and healing that weren't answered in the ways we had hoped.  It's heartbreaking to think of losing a child.  One little boy named Paxten who lost his fight with cancer, a little 5yo girl who had heart surgery with complications and a little boy named Noah with Down syndrome who died from pneumonia after having a bone marrow transplant.  I'm thankful that these sweet children are in the arms of Jesus, but I grieve with the families that are mourning. 

In the midst of pain I am constantly reminded that God is good.  The Lord gives and the Lord takes away - blessed be the name of the Lord.  He never promised that this life would be easy.  He has promised to always be with us.  I'm so thankful He is there.   

In counting our blessings here, Eliana is doing great!  Her site is healing beautifully - well, it's not leaking.  It does look good - but funny.  I'm guessing it will eventually look like a second misplaced belly button.  LOL  We'll see.  I'm thrilled though that she is no longer leaking!!!  She is continuing to learn and grow and just delight us all.

We've had some sickness here - though thankfully not bad.  Fevers, sore throat, lethargy - no bodily fluids involved in this sickness!  Daniel seemed to have the worst of it Sat night and Sun (yesterday), but was bouncing around full blast today.  Rebecca came down with it last night and is still feeling poorly.

We would love prayers for healing - and that this not have to be passed through the entire family.  I would also love for you to personally join me in praying for these precious families that have lost their beloved child.

Blessings,

Leslie

Healing is happening!

Praise God!  The first 4 days were rough - lots and lots of leakage.  At times I wondered if I should be doing something more or different.  She didn't seem dehydrated though and so we just plugged along doing the best we could.

Yesterday (Tues) was the first day I could see any improvement.  Today has also been much better!  The leakage is much smaller and is contained by the pads.  Also her site is looking better.  There is a strange "black string-looking thing" coming from the site.  I haven't had the nerve to pull on it until tonight and it is definitely "stuck".  I'm not sure what it is and am hoping that maybe it will fall off.  If not, I'll call our ped.

So, the surgeon was right.  It would close on it's own - with no intervention at all.  I'm thankful for that.  I'm thankful Eliana did not have to have another surgery.  I'm so very thankful that the tube is OUT!!!  Yippee!!!  Now, I'm feeling like I can celebrate and enjoy. 

The bandages are irritating her skin.  I'm treating it with mylanta.  (Per the surgeon's instructions.)  I'm not sure how much longer we'll need to keep things bandaged.  We'll just play it by ear and do our best. 

Thank you for your prayers and notes of encouragment.  I'm thankful for you dear friends that have walked with us through our ups and downs. 

This note is short.  We've had a busy day.  In between trying to do school, we had 2 therapies this morning - sensory/feeding therapy for Daniel and then feeding therapy for Eliana.  In the afternoon, physical therapy for Eliana.  So many things to remember and try to do.  It really goes against my "go with the flow" nature in terms of my days.  I'm learning though and working to get better.  Maybe in truth it's just laziness and I'm learning to be more disciplined.  That is a good thing too. 

Tomorrow we are expecting a visit from my parents.  We are all very excited to see them!  In the morning before they arrive we are scheduled to go on a field trip - flying!  It is weather dependant so we'll see if we are able to go up.

I need to get some sleep now.  Thank you again for your prayers.  I'll try to post some Easter pics soon.

Blessings,

Leslie

Small update on Monday

Hi Friends,

Thank you for your prayers for our sweet girl.  She is doing pretty well overall.  She is quite a tough and happy little girl!  She has decided over the last two days that she really likes crawling up the stairs!

Saturday  was a rough sleep night for her so I gave more tylenol yesterday and it really seemed to help.  She doesn't seem to be in a lot of pain except during changes of her bandages.  Perhaps though she just doesn't complain and it's good for me to give her a little tylenol just to help her out. 

In terms of leaking, yesterday was a better day.  I was really thinking maybe we had turned the corner until her evening feeding and she was soaked.  It looked like I had just poured the formula all over her little shirt and body.  When I changed her at this time I also noticed that Eliana is bleeding some around her site.  Not a lot, but it's never a comforting thing to remove bandages and see blood.

We would love your continued prayers for healing and wisdom for us to know if the conditions would warrant her being seen again by the surgeon. 

Sorry this is short, but it's morning and I need to tend to some sweet children.

Love,

Leslie

Our first 24 hours ...

of being free of the g-tube have been ... WET!  LOL  Seriously, wet.  I'm not surprised since she has a hole in her tummy.  It wasn't so bad the first 5 or 6 hours because some of the cauterized parts I think blocked some of the flow.  That isn't the case any more however.  Yesterday Eliana went through 6 outfits and I went through 3.  Yuck - too much information?

We have new neighbors and were outside talking with them last night - just meeting them and getting to know them a little bit.  Well, it was just after Eliana had eaten and I was holding her.  I felt her begin to leak, but didn't realize that it was as bad as it was.  We were both drenched.  What a way to meet someone, huh?  They seem nice though so hopefully it will be something we laugh about one day.

Eliana is feeling fine!  Yippee!!!  I'm so thankful she is not in pain.  She does not like bandage changes, but her skin is looking fine so far.  I'm putting Mylanta on her skin to help with the acid from the leakage.  Hopefully this will help.

I've found that she does better, in terms of leakage, if I can hold her reclined for 30 minutes to an hour after eating.  This works fine if she has fallen asleep.   Obviously it doesn't work if she is awake and those tend to be the really  messy times. 

As of this morning, with a big messy leak, I think it's best we stay home from our out of town field trip.  I hate to miss this time with friends, but think it would be too hard and just not the best for Eliana or I right now.  Sometimes it's hard to put *my* needs ahead of what my children would want, kwim?  I know that is part of my struggle in this decision.  I guess it's a good opportunity to talk about sacrifice and choosing to put others first.  I know they will understand.

I've been asked what Eliana's button looked like when it was pulled out.  (My dh wanted to know!)  I didn't see it.  At this point, Eliana was very upset and my eyes were on her.  Here is a picture though for those who are interested.  The large part at the bottom was the part that was in her tummy.  The tubing is the size of the hole in her tummy.  (Thus you can see why it hurt to have something large pulled out of a smaller hole.)  I think too that the skin had probably attached to it (thus the bleeding and need for cauterization).  Enough of that.  She is really feeling fine today.  :-)

Thank you for your prayers.  I'm thankful that this is the beginning of the end of feeding tubes.  I called yesterday to the medical supply company to let them know we are finished with the pump.  I will be glad to have the last of the medical supplies/machines out of our bedroom.  It's been 15 months of machines and soon - none.  :-)  Yippee!!!

I've learned a lot and hopefully am more tolerant and patient as a result.  I'm thankful for all that I've learned - though I would not have chosen it.  I am trying to walk each day one at a time - living, loving and learning with my precious family.  I am so richly blessed!

Thank you friends for your prayers.

With love,

Leslie

G-tube is OUT!

Her tube is OUT!    Wow, have I looked forward to saying that!

It was painful and she cried a LOT. I'll try to write more later when I have 2 hands. It sounds like the next couple of days may be challenging with leakage, dressings, etc. We would appreciate your continued prayers. (More specifics later.)

MORE INFO:

I awoke early this morning (for me and with the help of an alarm - LOL).  Eliana decided to sleep in.  Isn't that always the case?!  I did wake her about 8:15 so that she could eat before we went in.  My sister was here with the children and they were all excited to play!

When we arrived, we had a long wait.  I sat beside a woman and her son.  He has a rare syndrome which has left him profoundly delayed - both physically and mentally.  He also has a g-tube which she asked me if Eliana had.  As I watched her with him, I thought of what challenges she has faced.  She has only ever met ONE other person with a child with this syndrome.  That's hard to imagine from a support and knowledge perspective on how she has dealt with things.  Praying she would find comfort, strength and wisdom as she walks this path.

It also made me reflect on on the future (which I try NOT to do very often).  I often get comments on how cute Eliana is - and I believe it!  I know I'm biased, but I think she is adorable.  I know that things will change as she ages and that to have disabilities as you age is hard.  I was going to write more, but think this is probably good.  Back to the blessings of the day!

We finally met with the surgeon, Dr. Rice, who said it looked like she was doing well and asked if I was sure I wanted the tube out.  I told him "Yes" and said that we hadn't used it since late Oct/early Nov when she'd had salmonella.  His next question really caught me off guard.  He asked "Why did you wait so long?"  Huh?  I didn't realize that it was a choice!  Because my ped told me too!  I've been wanting this out for months!  We were told to wait through the sick season and then get it out.  I was even told the surgeon may not want to take it out.  He said that he was willing to do whatever the parents wanted.  He only asked because he has had people come back a day after it was removed wanting it back in.  I assured him that we were ready!

The next few moments made me again feel like an unprepared Mommy.  He asked if she'd had tylenol.  I said no, but that I'd like for her to have it if he were going to remove the tube.  If I'd known, I'd have given it to her in advance.  I should have thought it through and given it to her anyway.  Parenting isn't for cowards and there are so many opportunitites to "beat yourself up" over your mistakes. 

He took a look at her site and then said he would take it out.  With one hand on her stomach, he used the other to just yank it out!!!  (There was nothing to deflate as she had a BARD.)  No meds, no pain relief - just a hard pull and it was over.  It clearly hurt her too as she began to cry and scream unlike her normal cries.  It was hard for me not to sob with her.  She had a LOT of leakage too - a lot (both blood and stomach contents).  He applied multiple pads to clean up her site and then I got a peek.  Ugh.  Poor baby.  He used silver nitrate to cauterize the inside of the site to help it stop bleeding.

All this time she is crying and crying and I'm doing my best to comfort her.  Dr Rice then puts a bandage on her and tapes her up.  I hold her thinking she may settle, but she doesn't.  She cries and cries some more.  A nurse then came in with tylenol, which I gave her, but this doesn't settle her down either.  A little boy from another room even comes to peek in to see what is going on.

Dr Rice said that for the next several days that her dressing will need to be changed often - every couple of hours as she will leak whenever she is fed and just through the day as well.  I need to watch the amount of leakage because if it is "too much" then she could get dehydrated.  He said things should improve (amount of leakage) and begin to heal after several days.  If she is not completely healed by 3 to 4 weeks, then I need to call and have her scheduled for surgery to close the site.  Oh, I'll need to watch her skin with the tape too so that it doesn't "break down".  She has had problems with this in the past.  All of the leakage will be acidic which is hard on the skin.

I expected this moment to be filled with joy - and was caught off guard by some of the other emotions I felt including sadness.  And guilt over not being better prepared.  The stress of dealing with medical issues can be hard - especially when it's your child.  We are supposed to travel in 2 days with friends and I'm wondering if this will be feasible.  In fact, when I asked the surgeon if this would be a bad week-end for travelling, he looked at me surprised that I even asked.  He said it wouldn't be the best, but I could probably do it. 

If you have read all of this, thank you.  We would love prayers for the following things.

•  Healing of her site with no infection or problems.


• Her skin - that it would not break down under the constant changing of tape and dressing.


• Wisdom in knowing if her leakage is "too much" and if/when to seek help if it is needed.  (This would be a hospital trip.)


• Is it too much to ask that her site heal on her own without the need for further surgery?  I really just want what is best.


• Wisdom on doing what is best for Eliana - including knowing when to change my plans in order to best care for her.

That's all I can think of at the moment.  Please pray as you feel led for our family.  I'm so very thankful that we are almost at the end of this chapter.  I'll feel that it is complete once she is healed.  I guess I hadn't really looked beyond getting it out until now. 

Eliana fell asleep on the way home and had a short nap here.  When she woke up, she was happy.  She is smiling and seems herself.  Thank you God!  I'm planning to continue giving her pain meds today and as needed. 

One other thing, Dr Rice asked if the g-tube had been worth it.  Had it been helpful?  Absolutely!  She had enough damage and trauma from the NG that I don't think she would have learned how to eat without it coming out.  Her progress was slow enough too that she needed the g-tube for a solid couple of months to help her maintain her weight and fluids.

I am thankful that we had this opportunity.  I'm thankful that this was available and an option for our little girl.  I'm thankful for Dr Rice (he is soooo nice!) and the many others that have cared for us.  I'm grateful to the Great Physician who has held Eliana in His hands since long before we knew or loved her.

We are blessed beyond measure!  Thank you for your prayers.

With love,

Leslie