Surgical update - tentative date!

Our appointment with the surgeon went well yesterday.  He and his staff are very nice!  He is outgoing and friendly and very easy to talk with and ask questions.  We were asked a lot of questions about her history and why we wanted a G-tube.  It almost felt "elective" and I guess in some ways it is, though it isn't really like we have a choice either.  The doctor said he could do the G-tube "if that was what we wanted'.  I told him that if he had other suggestions that I would be willing to try them.  He commented that it looked like we had tried everything.  I feel like we have.  I want to be thorough and at the same time find guidance from the many wonderful people God has placed in our path.  I am very thankful that I feel we have had excellent medical care.  Perfect?  No.  I do think we have all done our best though and I have no regrets.  Perhaps with hindsight I would have done things differently, but isn't that always the case?

The surgeon wants to do an Upper GI to rule out any twisting (there was another word) or other problems in her intestines.  He didn't think we'd find anything, but just wanted to be sure.  He also said he would be willing to do a swallow study if the pediatrician or feeding therapist wanted them done.  He wanted to find out this before scheduling them as apparently it could be done at the same time.  I'm not sure of all that either involves - though know that I need to find answers.

I told him I didn't think she had reflux and offered to have him watch her eat.  He said he was just planning to take my word for it.  Arching her back is what I'm asked about.  She pulls back but not in pain, but more as a signal that she doesn't want it!  She did the same thing there.  It had been over 4 hours since she had last eaten and she took a couple of sips, swallowed and was done.  *sigh*  My poor little girl. 

We have tentatively scheduled surgery for Tuesday 17 July.  She will need to undergo the testing mentioned above in addition to some cardiac work  prior to her surgery.  The surgeon thought we would be in the hospital 2-3 days.  He also said that in comparision to the cardiac surgery she has already had that this would be much simpler.  The surgery itself lasting about an hour.  The date will be dependant on being able to schedule all of the other necessary testing  prior to this day.  Since next week is a holiday for many it pushes things back a bit. 

The type of G-tube he will be using is called a BARD.  He thought that the open incision was a better route for Eliana than a laproscopic insertion down her throat.  I couldn't agree more!!!  I don't want her to have anything else negative happening to her throat!  There will be an incision through the skin, abdominal wall and into the stomach.  The tube part that is outside of her body will lie flat and is more secure. 

If you want to read more information, here are a couple of links I found late last night.

http://www.pedisurg.com/PtEduc/Tube_Feeding.htm

http://www.opitznet.org/daily.html

One of the most encouraging things that I heard was that "often feeding really takes off" after getting a G-tube.  That is my hope and prayer for our little sweetheart. 

Prayer requests:

• Wisdom in knowing the tests she needs prior to the surgery.


• Health for Eliana and the surgical team/nursing staff.


• Successful operation with no complications.


• If there are problems affecting her ability to eat that they would be found.


• Pre-op testing to go smoothly and to indicate any problems that might exist. 


• Ability to eat.  I really want this to improve so that we can move to a more normal method of feeding.


• Peace as we wait ... and wait ... and wait.  Waiting is never easy.  I'm trying to just fall back into God's loving arms and relax.


• Boldness.  I missed an opportunity yesterday to share how much God has carried me through all of this trial.  I feel badly for just blowing it.  I don't know why I just chickened out - though I did go back and share that I was remiss in not stating it the first time.  What a disappointment for me to see how weak I still am.  Yet, what sweet comfort to know that He is there - waiting for me - loving me in spite of the times that I fail over and over again.  What a comfort to know that He is strong.  All the time.  In spite of my weakness, He is able to do great things in and through my life.  Thank you Lord!

We still have many questions about what the G-tube will be like.  I keep hearing over and over again that it is so much easier than the NG tube.  The NG has been hard.  I feel like I've been confined to our home for much of the last 6 months in addition to the difficulty of placing it over and over again.  I have a series of pictures of the care involved in the NG.  If can remember, I'll try to post them.

Blessed is the man who perseveres under trial, beause when he has stood the test, he will receive the crown of life that God has promised to those who love him.  James 1:12

With love,

Leslie

Eye Appointment, PT and more!

More to update today.  We had eye appointments this morning for Christopher, Joshua and Eliana.  We have been visiting this eye doctor for 10 years.  She commented that she thought this was the longest we'd gone without seeing each other - 6 months.  We have been there a lot over the last decade!  

Christopher got fitted for contacts.  He tried them last summer and couldn't get them to work for him.  He has done much better with them today.  It's amazing to me how different he looks without his glasses.  I think he is pretty excited about them.  He bought a  pair of sunglasses tonight and commented that they were his first pair.  I took a photo of him and will try to download it sometime this week-end. 

Joshua didn't do so well on his eye exam.  He has actually lost some of the vision in one of his eyes.  :-(  He is nearing the age when corrections won't be possible as the eye stops growing around age 8.  We are supposed to do more patching.  We haven't been as consistant as we should have been the last 6 months and really need to be diligent about it now!

Eliana had to get drops which she was not happy about.  I told the doctor that I wanted to hear that Eliana did not need glasses.  She said, "Well I can say that to you".  (This was before examining her.)  They thought she looked good in terms of being equal in both eyes and tracking.  Eliana wasn't the most cooperative by the time it came to be examined.  It took me holding her and the doctor prying open her eyes to get a peek at them.  Eliana is a little far-sighted, but does not need glasses.  I asked if she would definitely need them and the doctor wasn't sure.  She said that Eliana might grow out of it.  Oh, that is my hope and prayer!  

I feel like this is yet one more time that we are going to be in limbo ... waiting.  There has been a lot of unknowns ... wait and see ... wait until ... wait.  Is this my test?  Learning patience while waiting?  I think I'm doing better.  I've been surprised at times that I was alright with the waiting.  In all of this, we have had no control and so in some ways that made it a little easier to just rest in God's perfect timing ... and wait.  At other times though it has been hard.  Going into the eye appointment I was hoping and even expecting to hear something one way or another about Eliana needing glasses.  I wasn't expecting this.  It's alright though.  I'd rather hear this than to hear right now that she needs glasses.  

Physical therapy went well even though Eliana was very tired.  She had a hard time napping today.  It's fun to watch her learning and doing new things.  It's also really fun to see her therapist get excited about the things that she is doing.  It gives me a fresh perspective on her skills and accomplishments that I really enjoy!  I am thankful for this encouragment - and that too of a dear friend that writes often to cheer me on and to applaud each step of progress that Eliana makes.

I talked with someone at the Duke Development office today.  She was very excited about what Rebecca has done and is looking forward to making a "big deal" out of her donation.  I'm excited too - and proud of what she has accomplished.  We decided to wait until she was a little closer to her goal of $5000 and then we would start setting up a time to formally give the money.  Rebecca has been working diligently this week to build up her inventory again.  Additionally, several friends have written today about  Rebecca's bracelets offering help or wanting to buy a bracelet.  I continue to be thankful for the response to her efforts. 

Tonight Roger's sister and family have arrived.  We were very excited to see them and the children stayed up late to welcome them here!  It has been a long time and we are looking forward to getting to know each other again and having fun too!

Tomorrow we will be meeting with the surgeon to find out more information about the G-tube.  I appreciate your prayers for wisdom in knowing questions to ask and for any decisions that must be made.  I will update as I am able.

With love,

Leslie

Wholehearted Update

Hi Friends,

I wanted to update on a couple of things and then hopefully share some pictures. 

FEEDING - Today went well.  Eliana had a feeding therapy appointment this morning.  She ate some solid foods - and actually swallowed it.  She tried bananas and seemed to like them.  She also ate some rice cereal.  She wouldn't take anything from the bottle however.  The therapist used a syringe to put some in her mouth so that she would have to swallow.  She noticed that she was having a hard time swallowing and thought it might be worthwhile for Eliana to have a swallow study done.  She is planning to talk with someone about this for us. 

Later today she actually had two feeding that were much better then the last several days.  She has been eating 5-10cc (1/3 of an ounce) on average.  Today she had two feeds where she ate 40cc.  That is close to 1.5 ounces.  Still far from where she  should be - but at least she is improving.  For several days she has taken close to nothing.  I'm hoping and praying she will continue to improve.  I'm not sure it will change anything with the G-tube, but it would still be nice.

WHOLEHEARTED - Rebecca took off about a month and a half from making bracelets.  We had an incredibly busy time prior to May and she needed a break to finish up some other projects.  She has been working hard this week making bracelets (a lot of red, white and blue patriotic ones) and even some earrings and necklaces too.  She is working on building up her inventory so that she can try to reach her newest goal.  Remember the wild, dreaming, out of reach goal that she set initially  - well, she is getting close!  Her goal is $5000.  She is currently at $4078!

I'm not sure if I mentioned this in a previous entry and thought I'd add it here.  Rebecca has had so many people respond to her story in many different ways.  It has been a blessing to our family to see how others are touched and want to join in.  We have had people make donations of money, beads and gift certificates to buy more craft supplies.  We have had friends donate time in helping to make bracelets.  We also had one sweet little 7yo girl decide to make and sell bracelets on her own to help Rebecca.  She heard the story and her heart was touched and she even donated some of her own money to the cause in addition to the $55 she raised selling bracelets.  We have had others volunteer to help sell bracelets, but thus far haven't been able to take them up on their offer as we haven't been able to keep up with demand here.  That is a good problem to have.  One other person's response that touched my heart was my 7yo son donating $10 of his own money to help his sister's cause.  All of this is one more example to me of the body of Christ - working together to bless other families that are facing a medical crisis like the one we have faced.  We are so thankful that our daughter has a whole heart!  I am even more thankful for the healing God brings to all of our hearts. 

I called today and spoke with someone at the Duke Development office.  (The same gal I spoke with in March.)  She was surprised and excited to hear about Rebecca's sales.  The last we had talked she had wanted to reach $1000 before donating the money.  She wanted to have me talk with someone there about the publicity and how the donation would be handled.  (I'm expecting a  phone call tomorrow.)  I am excited that they are wanting to make a big deal out of it!  It will be a challenge for Rebecca to be the center of attention as she is quiet and a little shy.  I think it will be good for her though and know that she will rise to the occassion.

I know that I've promised pictures of her bracelets and have some to share.  I'm not sure that the pictures really do them justice.  She does beautiful work.  Most of the bracelets she makes are out of memory wire with 2-3 coils.  These are sold for $10.  Many (but not all) of them have metal hearts on them.   Here are a few that she has made in a variety of colors.







(She probably wouldn't want me to show these earrings as she can't duplicate those right now.  I just liked the picture of the bracelet.) 







Tomorrow (Thursday) is a big day!  We have eye appointments in the morning.  I've been praying that Eliana's eyes are fine.  Part of me feels silly as they are what they are - and yet, I'm hoping that they will be fine.  That I will hear that she does not need glasses.  It is a hard thing to hear that your baby can't see.  And a very hard thing to teach a baby to wear glasses.  We've done it before - and I'm just hoping not to do it again.

In the afternoon, Eliana has a physical therapy appointment.  These are usually fun.  The therapist comes to our house which is really nice!  Eliana likes to move and it helps to have exercises and games to do with her to help her muscle development.

In the evening we will be welcoming our cousins/aunt/uncle!  We are all very excited about seeing them and spending time together.  It's been a long time since we have been together.

In closing, I've been reminded again today of how much God loves me.  He shows me over and over again.  He has used many people to love and encourage me.  He has carried me when I was too weak to walk.  He has shown me that He is faithful and that He is always with me.  He loves you too!  You are so precious and beloved to Him!

With love,

Leslie

Our Week - 6/25-6/30

I thought I'd share a quick look at our week ahead.  We have a lot going on and would love prayers on some things too.

Monday - My house is CLEAN!!!  I love it!  It is so nice to look around and see clean.  It happened in about 2 hours as 3 gals swept in and cleaned it all.  This was a gift from some of my friends and it is soooo nice!  I wish I could do the same in keeping it clean.  I probably should have done a better job in training my children.  No guilt now though - just going to enjoy my clean house. 

We also got naps today - well 5 of us did anyway.  :-)  I was very happy to be one of them!

Tuesday - We have no plans!  I've always appreciated days like this and think that I will come to appreciate them even more given all the many, many appointments we have had for Eliana over the last 6 months.

Wednesday - Feeding therapy in the morning.  Eliana is eating some solid foods now.  I am trying one meal per day and may up that soon.  Yesterday she had  applesauce and seemed OK with it.  She doesn't really seem to like it or dislike it for that matter.

Bottle feeding is horrible.  She will often take one swallow - and then not be willing to take any more.  I'm not sure if it's pain or what.  I just see no improvement at all.

Thursday - Three of my children have eye appointments including Eliana.  It's her first one.  I'm really hoping and hoping that she has no eye issues.  For those that have seen pictures you know that all of our boys have glasses and some significant vision issues.  Rebecca has had some mild vision issues and wore glasses for a short time to help prevent any deterioration of her vision.  (It was 20/30 in one eye I think.  Not enough of a problem that she even really noticed.)  The interesting thing is that neither Roger or I wear glasses.  We obviously have something on one of the genes though!

I know that children with DS can often have vision problems related to that.  I'm just hoping/praying that she doesn't.  I really don't want to have to deal with glasses right now.  I know that if she needs them that we will do it, but I just don't want to.  I want her to have a break with something. 

Christopher is hoping to get fitted for contacts then.  We tried briefly last summer but he seems more motivated now. 

In the evening, Roger's sister and her family will be arriving from  Nebraska to stay for a week.  We are very much looking forward to having them visit!!!  It has been a long time since the cousins have seen each other and our nieces haven't yet met Daniel or Eliana. 

Friday - The appointment with the surgeon - or someone working in surgery - to discuss the possibility of a G-tube for Eliana.  I'm starting a list of questions.  If any of you reading have ideas or suggestions, please let me know!  I'm hoping that we will have more information after this meeting.  I'm not sure what all will be done at that meeting.  I know that we are supposed to take her in on an empty stomach.  That won't be hard since she doesn't really fuss for food.

Saturday - Fun with our cousins/aunt/uncle!  Not sure what we'll be doing yet.  I'm sure it will be fun.

We would love prayers for the upcoming appointments for Eliana - eye and surgery.  Prayers for clear answers, wisdom for the doctors, discernment for us for any decisions that need to be made and for the best options for Eliana to be what is available to her.  I will update as I can.  I'm looking forward to the appointments but also a little anxious about what we will hear.  Thank you dear friends for standing with us in prayer!

Love,

Leslie

PS.  I typed this earlier in the day and was waiting to post to add in a picture.  I didn't realize that I'd also have a bit more news to share.  #34 was tonight.  That is the number of times I've put in her NG tube.  Christopher even asked me if I thought I could get a job as a NICU nurse after my experience with Eliana.  I laughed - there is way more to that job that I know how to do.  Though I know a lot more about it now than I did 6 months ago. 

Here's a photo of Eliana from last Thur - the last time she pulled her tube.  Tonight I found it pulled after she had been sleeping on her tummy (she rolled over while sleeping) and then rubbing her face on the mattress.  So even the really great placement up the front of the face is not too tough for our little girl.  Thankfully it still stays in much better there!

Birthday Party

Just a few notes on our sweet boy's birthday!  We worked on the list trying to get as much done as we could. 

Roger and the children went to the party store to pick out balloons and paper goods.  Daniel selected a firefighter theme.  I couldn't believe it!  I've been trying to talk one of the boys into this theme for years thinking that it would be such fun.   Go figure on the year when we are really doing nothing big - they pick the theme that I wanted. 

Lunch out at McDonalds.  It's Daniel's favorite spot - though he only wants to eat the french fries (and have chocolate milk to drink).  Watched a show in the afternoon.  Played at the park in our neighborhood.  Did get to play with the keys.  (Not sure why he likes these so much!) 

 

We made the cake and decorated with streamers and balloons.  We had a few friends come by.  My 5yo was especially disappointed that we hadn't invited more friends and I really couldn't help him understand that I wasn't up to a big party - and it didn't matter to Daniel.

Daniel opened his gifts.  Everything was a hit from a red car to a pirate book to the Lightning McQueen flashlight.  We gave him a wagon.  When the gift was brought in it was covered by a large blanket.  Instead of pulling the blanket off of the gift - Daniel just crawled up under the blanket. 



Next we had cake and ice cream - chocolate cake with chocolate frosting.  Boy was he happy about this!  He blew out the candles (6 of them because they were all cute and I thought I might as well use them all.)  It took a few tries to get them out, but he did.

Finally we went outside.  Rebecca had helped me plan a few games - a search game for firefighter figures and vehicles and a relay with water ("Bucket Brigade").  Daniel wasn't interested in either but rather just wanted to ride on the jeep.  He likes to ride fast too!  One day Roger cut the speed down to slow and Daniel put his head on the steering wheel and cried.  Oh boy, we may be in trouble in another 12 years.  LOL



That was it.  A simple day, but lots of fun too!  Maybe I should rethink having elaborate parties. 

Blessings,

Leslie

Giggles

Trying the video clip again.  More on the birthday party later.

Love,

Leslie

The Last Day of "2"

That is 2 years old for my sweet Daniel.  My day with him started early - at about 2:30am when he was crying.  Not sure if he was having bad dreams, but he definitely wanted someone with him.  I loved how he reached out for me and then held my hand.  I looked at his still small hand in mine and remembered 3 years ago when I was waiting to meet him.  Anxious to know if he was a boy or girl, excited to see what he looked like and thrilled to know that soon we would have a new member in our family.  I love my children so much and looking back has always been both sweet and satisfying to my spirit.  It's one of the reasons that I love to scrapbook.

These 3 years have been sweet.  Daniel has an infectious smile, a mischievous grin and a delightful personality.  He comes up to me many times a day wanting to give a "kiss and hug".  Never mind that it really only includes a hug most of the time - to him they are a package deal.  Daniel laughs often, loves easily and brings such joy to our lives!  He is so much fun!!!  I think 2 year olds get a bad rap - it really is a delightful age.



This morning, Rebecca asked Daniel what things he would like to do for his birthday tomorrow.  It's our tradition to allow the birthday child to choose the meals and the activities for the day.  Rebecca made a list of the things that he said.

• Turn the key in Daddy's car (he is fascinated with our vehicles!)


• Turn the key in Mommy's car


• Mickey Mouse movie


• Go see Mrs. Yvette


• Read book


• People lay on pillows and sleep (I want to do this one!)


• Eat birthday cake


• Caillou movie


• Birthday  present


• Basketball game

Oh, this list made me chuckle!  I'm not sure where some of them came from - like a basketball game - since he doesn't play!  All in all it looks to be a fun day and that it will be an easy thing to please this little fellow.   (Below is one of the 95 photos he took recently.)



One other sweet moment with my littlest man was at naptime. He was awakened before he was ready and came into my room looking a little out of sorts. I told him to climb up on my bed and he snuggled up next to me and fell asleep. He had my arm pulled over his chest which reminded me of my first little boy when he was that age. It was the way that he felt secure and safe. It is a memory that was sweet to me then and even sweeter all these years later.  I enjoy cuddling with a sleeping child.  It starts early with mine as I hold my sleeping infants as much as I can.  

Tonight Roger took the children to Toys R Us to pick out a gift for Daniel.  We were looking for something to play with outside.  They chose a wagon.  We've considered one for years, but have never had one.  I hope he'll enjoy it!  I think Eliana will too one day.

While they were out, Eliana and I went to Babies R Us to buy a few things.  It's a new store near our home and it was my first time there.  I did something I haven't done before - I bought formula.  So what, you may be thinking.  I'm not sure why, but it was hard for me.  You'd think I could just give it up, but after nursing 5 children (and loving it) this was a hard thing for me to let go of both then and now.  Sometimes it is just the little reminders that things aren't the way that I had hoped.  We haven't gone out much either and at times it is hard to have people "ignore" your child.  :-(  I'm sure people don't know what to say. 

One other thing that was hard today.  Eliana ate nothing from her bottle.  She took a few sips a couple of times but I'm not even sure if she swallowed at all.  I think even in the midst of heart failure she always took at least something.  I remember one day, close to her surgery, where I thought she might go all day without eating orally.  She finally took almost an ounce at her last feeding of the day.  This was a first that I didn't like to see.  :-(  It confirms that going with the G-tube is going to be for the best for my sweet girl. 

On a happier note, I wanted to share a little video clip.  I hope it works. 

ETA:  It didn't work.  I'm not sure how to add it, though I know there is a way.  I'll post it when it gets figured out.  If anyone knows how to help me, please do.  Kristina?  

I tried to get a shot of Christopher with Eliana that showed how much they love each other.  Tonight they were sitting beside each other on the sofa and as I looked over I saw her looking up at him.  What a lucky little girl!  She is blessed with 4 big brothers and a big sister too!  They all adore her and the feeling is mutual.  Christopher loves playing with Eliana and will frequently come and swoop her away from me or out of her crib.  I love seeing him with her - loving her and enjoying her and finding her delightful.  I pray that their relationship will always be like this.  

Tomorrow we will be celebrating Daniel.  As a funny, I've been asking him recently how old he was.  When he didn't answer, I would tell him that he was two.  Sometimes I would add that he would "soon be three".  His response was always "No I'm not.  I'm Daniel."    So very thankful for my precious little boy!

With love

Leslie

News from Tuesday

We have had a good couple of days.  I'm feeling much better and am so thankful for the many faithful prayer warriers that are lifting up our family.  I am truly blessed to be a part of the body of Christ - and honestly have never felt such a part as I have these last 6 months.  I've never been on the receiving end of so much love, care, encouragment and support.  It has been a blessing beyond words.

I'll try to highlight a little of what has been going on around here. 

TESTING:  Well, we are 2/3 finished with testing here.  Yippee!!!  Hopefully we will finish up tomorrow.  This is Joshua's  (7) first year testing and he is doing really well.  He is having fun with it and not letting it stress him at all.  Rebecca wondered what would happen if she did poorly and I reassured her that nothing bad would happen.  I know that she has learned a LOT this year.  She has started her own non-profit and raised a large sum of money for an 11yo!  She has learned more about medical issues and procedures than I ever knew as a child - and for most of my life as an adult too.  She has learned more about caring for children and having compassion on others than I could have taught with a character lesson.  The test may not measure all of these things - but she has learned!  We all have!

BLESSINGS:  I think I shared that some friends pooled money to hire a cleaning service to come in to do a thorough one-time cleaning.  It was fabulous!  I've had individuals clean once or twice, but these two gals worked so well as a team and got soooo much done!  It was so nice!  Well I just received a phone call from the cleaning service that my friends have again paid for a cleaning for our house.  I just cried tears of happiness and blessing to hear this.  What a sweet gift - though not as sweet as the precious ladies that I call friends!  Thank you!

FEEDING:  Things are just getting worse.  I'm not sure if she has "lost" her suck or is in pain or what.  I had hoped for a magic bullet, hoped that things would improve and hoped that one day we would just turn the corner.  That hasn't happened and honestly, I don't think that it will now - and neither do any of her therapists or doctors.  She is averaging 1-2 ounces per day by bottle now.  (Total consumed is 28 ounces.) 

We have tried some solid foods - rice cereal and applesauce.  She doesn't seem to mind either, though I'm not sure how much is going in.  I know that a lot of it goes back out, though it did with my other children too.  This isn't the most flattering picture, but I thought it was funny.





Today while at feeding therapy, she did swallow some of the rice cereal and began to cry.  This led the therapist to think that she is having pain.  :-(  Poor little girl.  It has just been too much.  She is still taking the prevacid which should help if there is pain/irritation and also any reflux that would just hurt.

Sometimes I look back and wonder what I could or should have done differently.  Not to blame myself or anyone else.  I know that we have all done the best that we could.  I just wonder sometimes if things could be different.  *sigh*  The day after surgery she did a great job eating!  I think she was weaned too quickly from her meds and honestly maybe sent home too soon as well.  (More time in the hospital would have gotten her feeding therapy daily.)  She was in a lot of pain and it took almost a week to get her comfortable again.  Enough reflecting as it can't be changed now.  We were focused on her heart as that was the top priority.  I have been assured that she will eat - it just may take time and a lot of hard work to get there. 

Now that she is more physically active, she adds her own challenges to feeding.  The tube pulling has been the worst!  On a note of praise - the current tube has been in for 9 days!!!  I think that is a record!  The newest challenge is rolling over.  We have her bed on an incline as well as a roll of blankets making a little nest around her to help keep her upright.  When she rolls over, she often gets stuck on the roll and then has a hard time lifting her head up as well.  I'm not sure why she keeps doing it.  Perhaps because she can



If you look in the picture you can see the feeding tube attached to the top of her head with the red port showing. 

BIRTHDAY COMING:  Our sweet Daniel has a birthday coming up soon!  I haven't done any planning.  I love planning parties and we typically really go all out for them.  Well, this year is going to be different for all of us.  Thankfully his wants are simple - chocolate cake with candles and eating at McDonalds.  We can do that!  We are trying to think of a few fun things to do on that day that would make it even more fun for him.  I'll definitely post what we are up to - and pictures too of course.

Something silly about me:  Today as I was headed to Eliana's feeding therapy I decided to treat myself to a drink.  I stopped at Wendy's and saw a picture of a float.  It looked good and I ordered it.  I wasn't given an option of flavors and when it arrived, it looked like a coke.  I haven't had a coke in 3 years and 1 day.  (Yes, I know to the day as it was just a couple of days before Daniel was born.)  I had many of them prior to that.  During my pregnancies it was one of the few things I could keep down.  I decided just before Daniel was born that I could probably make it until birth and decided to give it up for health reasons.  I haven't been willing to try it since.  I loved coke!  I think if I tried it and realized how much I've been missing ... well, I'd be a goner.  I'm truly surprised I haven't given in during the last 6 months.  There are many times I could have used some caffeine!  Anyway, as I looked at it and debated, I saw a friend just ahead of me waiting for food.  I handed over the drink and hope that someone in their family was able to enjoy it.  ;-)  I do miss a good coke!  :-)

A silly about Daniel:  As we were downloading pictures from the cameras tonight, we noticed some that Daniel had taken.  He's almost 3yo.  It was obvious he was the culprit as he took some of himself and a number of Isaiah as well as items around the house.  As I looked at the photos, I noticed that there were more and more of them.  He took 95 pictures!!!  I couldn't believe he took so many.  He must have had the zoom up as most of them were so close as not to be any good.  They are funny though.

One last photo.  I have to have at least one cute one in here.  I'm proud of myself as I figured out how to post these to photobucket and upload them.  I haven't figured out how to post a video though.  We have a really cute one of Eliana laughing that I would love to share.



Finishing up our last feeding of the day.  It is time to go to bed soon.  As usual, I'm exhausted. 

Love to you all,

Leslie

Our week ahead

Just thought I'd share a glimpse into our week. 

Monday - I need to start giving standardized tests to my oldest three.  It's required by law in NC or I wouldn't consider doing it this year.  It will be interesting to see how they score given that their schooling the last 6 months has been a little less than traditional.  I expect to see that they have progressed as though they had schooled normally.  Even if they don't, they have each learned lessons in compassion, serving others and lots of health/medical issues that won't show up on a test, but will show up again and again in their lives.  I'm glad that they are learning lessons that will serve them no matter what they choose to do in life.

Baseball game in the evening with friends.  It's a "Family Night" featuring a Christian band and the Veggie Tales (or "Potatoes" as my 2yo calls them - not sure why).  Eliana and I won't be going.

Tuesday - Physical therapy at 12:30.  Yes, that is right during her feeding time so I'll need to try to adjust it so as not to interfere.  She is doing so well in this area that it is fun to see what is coming next.  Then she'll have feeding therapy at 5:00.  It will help to have her schedule shifted as this is not a normal feeding time for Eliana.  It's a good thing we have the night to catch up or adjust schedules as needed.  Since she doesn't eat at 3am, it gives me flexibility to give the midnight feeding later if we are behind.  If we go out - to an appt, or like today to church, then inevitably we will be behind.  I'm an hour behind today due to church, so  up later to get in that last feeding.

Wednesday - Nothing!  I love days of staying home.  It won't be nothing to do as we will need to keep on with the testing. 

Feeding is still a struggle.  She seems to be getting worse.  We have managed to find a way to get her meds in using a syringe.  The first one clogged up, but a smaller one seems to be working fine.  It is so small that it takes 5-7 times to get the meds in, but Eliana doesn't seem to mind.

Thursday - My sweet Daniel will be 3!  How can that be that my baby is 3 already?  He is such a joy and delight.  He loves to smile and laugh.  When I asked him what he wanted for his birthday he told me "chocolate cake".  I asked what he wanted on the cake - I was thinking of a theme or decoration.  His response was "candles".  LOL  I think I can manage this!  I need to plan some sort of small party for him though I'm not sure when that will happen.

Roger usually takes the day off on the children's birthday and we let them decide what we are going to eat and what we are going to do.  It will be fun to see what he is going to pick.

Friday - Nothing scheduled except maybe the science lab for my 14yo.  We are behind and have just a couple more to do to finish up the year.  He enjoys it so it isn't a problem to keep up with science. 

So, that's a glimpse of our week.  No medical appointments!  Next week we'll have 2 - one with our eye dr and the other with the surgeon for the g-tube.

As usual, it is very very late and Im exhausted.  More later.  I have some photos of Eliana eating that I want to share with you - and maybe a video clip of her laughing that is too cute!

Love,

Leslie

I came to you in weakness and fear, and with much trembling.  My message and my preaching were not with wise and persuasive words, but with a demonstration of the Spririt's power, so that your faith may not rest on men's wisdom but on God's power.  1 Corinthians 2:3-5

6 Months Old!

I'm going to have to adjust the date of this posting as it is techicnally already past midnight - but my sweet girl is 6 months old today!  It's hard to believe that it's been that long and in other regards it seems much longer.  The time has not flown though sometimes I do wonder where it has gone.  The haze of the first several months has gone thankfully.

Thank you all so much for your words of encouragment and your prayers when I was feeling so sad the other day.  I can't tell you how much it helps!  I know I'm being carried.  I know I am weak.  I pray that God will use this time to mold me into the person that HE wants me to be.  I understand that my emotions make some uncomfortable, but they are what they are.  I don't need to be "fixed", but know that in time God will do what He wants to with me.  I trust that He will guide me, He will restore me and He will fill my heart with His love and peace.  What more could I ask for?!  (Well, I could probably think of a few things, but in the grand scheme of things this is what matters.)

June 16th - the 16th of each month now has 2 markers on it for me.  The first is Eliana's birthdate.  The second is the date of her open-heart surgery.  It has been two months now.  Her heart is strong and doing great!  Thank you God for this blessing.  A friend of a friend's son went through surgery just a week after Eliana and has had major struggles.  In fact, he just recently went home.  I thank God for the healing He is doing for so many children - people that I'm following who have children facing some of the same struggles as Eliana.

I'll try to post more tomorrow.  As usual it is very late here (2:20am) and I need to head to bed.  We had a really fun evening tonight - well, all but poor Isaiah who fell asleep early and missed out on the fun.  I tried to wake him, but he was worn out.  We'll work on more fun tomorrow.

An early Happy Father's Day to the wonderful men in my life!

With love

Leslie

Eliana is going to need another surgery

Hi Friends,

I must confess that I've had a very hard morning.  I had a good long cry.  Well, I'm not sure it felt "good" then, but thankfully it did help me to feel better.  I often feel like I'm riding on a roller-coaster - though the highs have been small and sweet like a laugh or giggle from Eliana, a picked flower or a hug from one of my boys or a precious note from my oldest daughter.   

I'm struggling with feeling so weak.  I wish I could be someone with a testimony of being strong in the midst of all of my struggles.  I see what others are going through and their message of hope and strength.  I want to be able to share that as well, but there are times when it just feels so heavy.  I feel like I'm just not measuring up.  I still have so much to learn. 

I know that in all of this that it is only through God that I have any hope at all.  It is only His strength that carries me from day to day.  It is only His love that enables me to function on days when the pain is great.  I know that He loves me so very much.  Why do I struggle then so much with my feelings?  It isn't all the time, but more often that I'm used to feeling.  Is it a lack of faith?

I sometimes wonder if I should write or type at all when I'm feeling emotional.  I do have many moments of happiness, joy and blessing.  I hope that I share those too, though maybe not enough?  I have been open about sharing my struggles and sometimes wonder if I should be more private.  Should I be working this out privately?  Does sharing the struggles cause more harm than good?  I have gotten such support though that I continue to just lay myself out there.  I think that being honest and real has great benefit - to me and hopefully to others as well.  Sometimes though I wonder. 

Here are a few of the things for which I would love prayer.

Surgery - Eliana is going to need another one to place a G-tube to help with her feeding issues.  :cry:  I expected it, but it is not ever something you want to hear.  We meet with the surgeon in 2 weeks to have some testing done and find out more.  I really don't know what to expect there.  I know this is necessary and will be for her good.  I also know that there are risks associated with any surgery and wonder about the unknowns associated with having a G-tube. 

I do know that in Feb when we were considering the need for a feeding tube that I talked with some people then and decided that the G-tube looked like a better option since the NG sometimes caused oral aversions.  The cardiologist decided on NG as it was not a surgery and he wanted no other surgeries at least 6 weeks prior to her heart surgery.  He thought we did not have that time.  Obviously hind-sight is clearer and we know now that she did have time and unfortunately she also has some (significant?) oral aversions.  Her feedings are not improving.  In fact, yesterday she took just one ounce orally.  Thus far she isn't doing much better today.  In fact at her last feeding she was awake, but would cry anytime the bottle touched her mouth.  She ate nothing from the bottle.   

When meeting with her feeding therapist, she said something about the G-tube and then 18 months.  I questioned this - 18 months?  That is a long time.  She replied that many people had them for years!  *sigh*  So many struggles for so long.   

She is making great improvments in the physical areas though and it is fun to see her learning new things.  It's quite a different path to have to "teach" so many, many things that other children learn on their own and that we just take for granted that they will learn to do.  Things that she might learn to do "wrong" which would affect her body in adverse ways.  I'm glad that someone has figured this out, though I wish for a simpler way.  Yesterday during her PT (physical therapy) appointment she did very well.  Her therapist is marking her progress on a chart and she is advancing quickly.

Not surprisingly, being in heart failure for 3 months and then recovery did inhibit her development.  She is making great strides though.  She advanced 2 weeks worth in the last week.  She is not on the chart yet for a typically developing child, but she is close and we hope she will be on it soon.  I know that she is expected to be delayed, but we can still work and do what we can to give her every opportunity to develop as best she can.

Being at the hospital yesterday with Catherine was one of the most beautiful and amazing experiences.  I am so very thankful to have been allowed this experience with my friend.  Leaving the hospital though just washed emotions over me of feelings of failure and sadness (birth experience, loss of dreams, breastfeeding and even my emotions over everything).  I didn't expect this and it has been hard.  I hope that doesn't sound awful.  How can I feel this after being given such a gift?  I think it just brought things back to me. 

Catherine's move is coming closer.  This birth was always the signal that the end was near.  Something neither of us have really wanted to face.  :cry:  Please keep praying for her as she will be leaving all of her friends.  We both have many treasured and precious friendships here.  A blessing I will continue to have physically close and she will not. 

Sometimes it just hits me.  Like when I was arranging meals and the list of dates wasn't nearly long enough.  Or when I was driving home having just heard that Eliana will need surgery and wishing she was home so I could tell her.  I knew I could call, but just wanted a hug.  Because I knew what she was doing, I knew she'd be gone already.  Then the thought crossed my mind that sometime soon, whenever I wanted her to be home that she wouldn't be there at all. 

Now I'm wondering if I should even post all of this.  Sharing sometimes puts you in a very vulnerable position.  I'm feeling weak, selfish and a failure.  I know that God can use this for good.  I do trust Him or at least I'm trying to.  Could you pray?  If you have some verses of encouragment I would love those too.  My reading this morning wasn't the best choice. 

I appreciate the many times people have written to encourage me.  I appreciate so much that others are finding help in reading some of what we are going through.  I know that when I am reading of the struggles that others are going through it does help me to find many things in my own life to be thankful for.  I hope that I don't come across as ungrateful - I am thankful for so many things!  This path has just been hard.  I know that for some people it's hard to be around someone that is struggling so very much.  I am trusting that God will continue to use this for good.  I truly don't understand though I know God to be good.  Very good.

Love to you all,

Wow! What an amazing day!

My day started early - very early.  Well, actually it probably ended early as it was sometime after 1am - probably close to 1:15 - when I went to sleep after Eliana's last feeding.  I was awakened at 3:25am by the phone ringing.  I answered quickly to hear my friend Catherine telling me she was in labor.  I told her I'd be right over.  I got dressed and ran next door, just thrilled to be a part of this incredible experience with her.  I'm not going to share all of the details as it is her story to tell.  I do want to share what a blessing this was and the evidences of God's hand. 

Catherine had not expected to go early as she hasn't in the past.  They have been trying to plan a way to coordinate this sweet baby's birth so that her dh (dear husband) was here, child care was taken care of and the medical staff was on call that she wanted to care for her.  It was a lot to consider and final plans had not yet been made as her due date was still 5 days away. 

Her dh was out of state, and expected to arrive in about 4 hours.  Her contractions were already strong and frequent.  I honestly didn't think her dh would make it.  I don't think she did either.  We packed up some of her things, called a friend to come stay with her children, made a list of to dos and then left for the hospital. 

As we drove up to the ER, a staff person was outside and asked why we were there.  When I said Catherine was in labor, she joked that was probably why we were wheeling into the parking lot.  She helped Catherine in while I parked the car. 

Up in labor and delivery, we were visited briefly by some of the staff (nurses and a doctor) but pretty much left alone.  Catherine did such a fabulous job!  It was hard for me to see her in such pain and I found myself praying and praying for so many different details.  I called her dh several times to update him on her progress. 

When we initially arrived and she was checked she was at a 4.  Several hours later, when the new dr arrived and checked her she was at a 4-5.  Quite disappointing to say the least.   He also told her he expected this last bit to go quickly - and he was right!  The best part though was when he told Catherine that he had called her midwife and she was rushing over!  What a sweet unexpected surprise and blessing!  Hearing her side of it - just added to the fact that God had orchestrated this time.  Had she gone as quickly as we had thought, her dh might not have made it and neither would her midwife.

With a lot more hard work, my sweet friends welcomed their fourth child and second son into their family.  He is so beautiful and perfect in every way.  We are so very glad he is here.

Welcome to the world Caleb Kenneth.  We are rejoice in your birth sweet little man!

I've always wanted to see a birth - in which I wasn't the one doing the birthing.  This was just such a sweet gift to be able to share this experience with my precious friend.  It's one that I'll never forget and one that I'm so thankful to have been a part of.  I've always felt that childbirth was one of the most amazing and beautiful experiences and seeing it from a different perspective was no different.  Ironically, it is probably only due to the fact the Eliana doesn't nurse that I had the freedom to go and be gone from her for so long.  It's really the only positive I've found for not being able to nurse her longer.

I have much more to update regarding Eliana's feeding, but am just too tired to do it now.  Will try to do it tomorrow as we still covet your prayers.  I feel like I've been on a roller-coaster ride of emotions this week.  Praying for God's peace to fill my heart.  

With love,

Leslie 

Note from our pediatrician

I received a note from Eliana's pediatrician today.  Have I mentioned lately how much I appreciate her and the attention she gives to Eliana.  I am so thankful to have a doctor that knows her - and cares about her and is willing to care for her during her off hours.  She has been a real blessing!  We met her at the hospital after Eliana was born as the doctor doing rounds.  The NICU doctor connected us with her as someone that would be very helpful.  She was so much more attentive and helpful to us than our regular ped during this time.  (He didn't have time to stop to talk to me, just peek in my room and say hi.)  We decided right then to switch practices and haven't regretted it for a minute!  I thank God for placing her in our lives. 

Here's most of her note to me.  I've edited and removed all names.   

Just had a nice conversation with Dr. C. He and I agree that if the OT's think they can make significant improvements in her feeding in the next month or so, we can wait on the GT, but if they are not optimistic about improvement soon, we ought to go ahead with the G tube. He says Eliana is doing SO well from a cardiac perspective that he doesn't need to see her again for a while, so you and I will be (if needed) making the Pediatric Surgery referral, and they'll do the pre-op cardiology eval if she requires surgery. She'll also need antibiotics pre-GT, if it is done. I think I'm leaning to a 1) borderline oral motor skills PLUS 2)the aversion issues of NG tube, endotracheal tube, oral suction, etc as the issue here. I am doubting the reflux, but Prevacid should help if it exists. Perhaps (3 feeding specialists we have seen) can convene and see what their shared perspective is.  Just call me after you see OT, and we'll think things through.

So, we have a plan and a direction.  I appreciate that she noted that it would be a joint decision/referral.  I appreciate how she looks at the whole picture - quality of life she calls it - in terms of our care for Eliana. 

If you are reading this, I would love prayers for our therapist.  We will be seeing her tomorrow morning.  Prayers for wisdom in knowing what the future is looking like in order to make the best decision for our sweet girl.  Prayers for peace with whatever the decision may be.

This journey is not one that I would ever have chosen, but admist the struggles I have been blessed over and over again.  Many, many times God has used precious friends - and strangers turned friend - to touch our hearts and bear our burdens.  I pray that as I walk this path that I would learn to do so with peace, love and trust in the One who loves me completely.  I still have much to learn.

Thank you for your love and support!

With love,

Leslie

  

Maybe I should have chosen a different name

for my blog.  I don't feel so joyful right now.  I feel like I cry so very often - and wonder how long it will be before tears cascading down my face aren't the norm.  For those that don't know me in real life, I wouldn't consider myself a crier at all.  I really don't like to cry (and thus avoid sad movies and books as best I can). 

Today just a simple something has sent me into tears and I'm having a hard time stopping.  Today I started working on setting up meals for my sweet friend Catherine.  We've done this back and forth for each other many times over the years.  This though is the "last time".  Each of these "last times" is hard.  She is due to have her baby next week and I am hoping to set up meals beginning when she comes home until they move.  Just thinking about that breaks my heart.  It's so close now.  I'm working on a month of meals - just a month.  How can it be here already?  We knew that the day would come and it a little easier to ignore (for brief times) when it was further away.  No more of that now. 

Please pray for us as we deal with a lot of emotions over this move.  We've walked beside each other for the last 17 years - through marriage, pregnancies, miscarriages, Down syndrome (both of us!), surgery and more.  Some of those were things that were so exciting to go through together.  Others have been hard and painful.  Moving was not one we ever expected.  Just seeing the for sale sign in her yard seems so wrong.  This just wasn't the plan when we built our houses beside each other 8 years ago.  I am so very thankful that God blessed me with such a precious friend so many years ago.  I know that our friendship will not end, but it won't be the running back and forth to each other's houses that we are so accustomed to doing.   

I know God can and will work in all of this for good.  It's still hard though.  I've been crying on and off for hours.  The weight of all that I'm dealing with still feels so very heavy at times.  I know things will work out.  I know that God is with me - carrying me much of the time.  I know all of that - but I still feel sad.  Need to go as I have three wild little boys.  More update later on the conversation between Eliana's cardiologist and pediatrician.

Tearfully,
Leslie

ETA:  It's 7:30pm now - a couple of hours have passed and I'm doing much better now.  Well, at least I'm not crying any longer.  I'm not sure much will take away the sadness.  The distraction of supper and a house full of active and noisy children does help!   I love being a Mom!  (That was why I chose this name for my blog.)  Being a mom has been the most amazing experience.  I've learned so much and wouldn't trade it for the world! 

I thank God for the opportunity to be a wife, mom and friend.  I am thankful for the many blessings in my life.  I am seeking to find joy in the journey - to find my joy in Him.  Some days it is really a struggle.  I am hoping to learn to rest in Him, to cling to Him and to live only through Him.

Update ... though not a lot of news

Some days do you just wonder where your time goes?  At the end of the day sometimes I wonder why I haven't had time to do even some of the basic things - but it's been so long that I'm becoming more used to it.  Probably not a great sign - though maybe I'm getting to be more relaxed.  Stop laughing if you know how "driven" I can be.  I do know how to relax too - and have had LOTS of opportunities to learn that recently too.

My oldest 5 children went to VBS this morning (and had a great time) while Eliana and I headed over to cardiology.  We met the nurse that we see each time we are there, but today she has on a v-neck top and I noticed her scar.  I told her that I didn't realize that she had also had heart surgery.  She has had several in addition to breast cancer.  She is such a sweet gal and I told her that her empathy for others was readily apparent.  Isn't it amazing how we can be walking on our own path and not realize what others so close to us are going through - or have gone through. 

We saw a different cardiologist (a fellow) today initially - though one we've seen before.  When he looked at Eliana, he commented that he remembered her from her stay in the hospital (for her heart surgery).  What reminded him  - was her bow!  (He even commented that it was the same color that she had on then.)  It really is something she is known for and now that we are using it to hold her tubing away from her face it's a necessary thing each day too!. 

He checked out her heart (looks good) and lungs (no fluid) and thought she was doing well.  Everyone we saw today commented on her scar/incision site and how "great" it looks.  I asked about a swallow study (someone had suggested it to me) and he said that the referral for this would come from her therapist.  It's really only to see if there is fluid in the lungs which doesn't seem to be her issue.  He asked if I had questions for our regular cardiologist and I said that I wanted to talk with him about the G-tube. 

While waiting for Dr C, one of the echo techs came in and chatted with me.  She is pregnant with her first and I hope that some of what I shared with her was an encouragment.  Dr C came in with the other Dr. and we talked for a good while.  He liked the positioning of the tube and I told him that I'd given him credit for it whenever someone commented on it. 

He told me that from a cardiac standpoint that Eliana is doing great and that he doesn't need to see us for a few months.  (She will need another echo in 2 months.)  I jokingly asked if he was trying to get rid of us.  He said he wasn't and that he would continue to follow her for feeding if I wanted, but that her feeding issues were no longer cardiac related.  He thought it would be helpful for one doctor to be the point person in terms of managing Eliana's care and in making decisions.  I told him that I felt sure that her pediatrician would feel comfortable in this role and he said he'd call her to discuss it.  I'm so thankful to have medical professionals that are willing and interested in working together.  I know our care is better because of this!

We talked about the option of the G-tube.  He does not want to rush into getting this.  He wanted me to find out from her therapists whether this is a skills problem or a feeding aversion/oral issue.  He said his recommendation would vary depending on the answer. 

If it is a skills problem, then we would probably need the G-tube.  If it's some oral motor or feeding aversion then he would like for us to try to deal with this problem to see if we could avoid the G-tube. 

He looked up the reports from the latest 2 feeding therapists to see what they had written in terms of recommendations.  One recommended the G-tube.  The other was interested in working with Eliana for a while to see if we could make some progress.  She thinks that there is no rush to getting the G-tube.  Dr. C called the first a pessimist and said that he agreed with the second one.  I told him that we would see the 2nd gal again on Wed.  He wanted us to talk more about our options after seeing her.  He thinks  that if it would only take a couple of months before she can maintain caloric intake then we could avoid the G.  He also suggested that starting solids might be a good thing too.

A couple of months sounds like  looooong time.  Though honestly if I'd known all that I've gone through in the last 6 ahead of time, I'm sure it would have sounded impossible.  One day at a time.  One step at a time. 

So I have my homework in terms of talking with the OT on Wed morning.  I'm looking forward to hearing what she thinks and has to say in terms of a recommendation.  I don't want to rush into something that I'll regret and on the other hand I don't see any point in postponing if it is inevitable.  Kwow what I mean?  It's hard when all of the advice isn't consistant, but I'm OK with that too.  (At least for now.)

We came home and rested - all but the 5 and 7yo boys.  It was soooo nice to have a nap!  Shortly after getting up, Catherine called to ask if her children could come over for several hours.  We had a fun time together and now everyone is asleep and Eliana is getting her last feeding.

I also called and talked with Eliana's ped this evening.  I updated her on what had gone on and told her that Dr. C was planning to call her and talk.  She asked me to let her know about the OT/feeding meeting on Wed.  One thing that she told me was that the other factor to consider in deciding about the G-tube is quality of life - trauma of putting in the tube multiple times, damage to her skin, and problems in her throat just from having the tube in so long. 

Prevacid I gave orally tonight.  Eliana spit some of it, but I think most went in.  Some did get stuck in the syringe and I probably need to figure out how to handle that too so that she is getting her full dose,

Well, I think that's it.  I'll edit if there is more to add later.  Eliana's feeding pump just finished and I'm exhausted.  Thank you for your continued prayers. 

Here is a Bible passage that a friend shared with me that was very encouraging.  I hope it will be for you too!

It's 1 Peter 1: 3-9

3Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, 4and into an inheritance that can never perish, spoil or fade—kept in heaven for you, 5who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. 6In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. 7These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed. 8Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, 9for you are receiving the goal of your faith, the salvation of your souls.



With love,

Leslie

It's out again ...

and I'm just sitting here crying.    I don't know why I'm feeling so overwhelmed by this right now - but I am.

It was her tube that was clogged again. This time I was sure. I gave her med (which I think is what clogged the tube as it was a powder dissolved in water - though not very well no matter what I did). Afterwards I tried to feed her and started getting "flow errors" from the pump right away. I did a quick check of the pump then decided to try to flush water down her tube. It wouldn't go at all. I kept pushing it and finally the syringe just popped off spraying the water everywhere.

I had no choice but to remove it. I'm not sure how soon I can put it back in. I tried to flush the tube once I had removed it - and couldn't then either. She cried and cried as I removed the tape. She has red marks from the tape even though I was as gentle as I could be in removing it.

Just feeling overwhelmed right now. Earlier today I thought I'd look at painting a room in the house. I thought it might be fun to do something that was not serious and thought that the color would cheer me up. I even felt frivilous in thinking about it - something I haven't had the freedom/time to do in what seems like a long time.  Feeling slapped back to reality pretty quickly.

Not meaning to have a pity party over here. It's not that big a thing - it's just one more thing and I'm feeling spent.

We visit the cardiologist tomorrow (Monday) and her ped wants a phone call after the visit. I'm guessing we'll start talking about surgery again.   We just can't keep putting this in over and over and over. 

I feel like I've rambled a bit now. Just feeling sad. My sweet Rebecca has been trying to cheer me up with hugs. I have so much to be thankful for - I really do. I know God is with me.  I know that He loves me.  I know that I have not been forsaken.  I know that things will work out. At this moment though I'm just Thank you for your prayers.

ETA:  It's 1:30am now.  I'm up with Eliana while she is getting her last feeding of the day.  Her schedule was thrown off when we went to church this morning.  Which was a nice time and not hard at all.  We didn't see many people there.  And then it was thrown off again when she had some by bottle and coudn't finish the feed.  She ended up missing the rest of that fed - or I would be up all night trying to fit them back in.  (I can't reinsert the tube for at least an hour after it's come out and she has eaten or she may get sick.   Highly likely given how hard it is to get it in.)

I can see in her tube and it is definitely the prevacid that clogged it up.  In more than one place - though mainly a big chunk in one section.  I tried dissolving the tablet in room temp water - by putting the table into the water, as well as adding water to the tablet.  The directions say not to crush, though I did stir.  I also tried shaking it when I added it to the syringe.  I couldn't think of any other options to try at the time.

Her tube is in.  As usual lately, it was tough to get it in.  It just gets stuck on her gag reflex - over and over again.  :cry:  My friend Rebecca helped this time.  She was calm, but I don't think it was easy for her either, especially when Eliana gets to crying.

Thank you dear friends for your notes and your prayers.  I am deeply blessed in so many ways!  Trying to go now and respond to your sweet comments.
With love,

Leslie

A Full Day and more updates

Just wanted to update.  It's probably obvious that I didn't go on the trip to the conference.  I really wanted to go but with all of the problems that we had with the feeding pump/tube on Thur night, it's probably best that we were home.  I wouldn't have wanted to deal with all of that in an unfamiliar environment.  I had prayed and asked God to work things out with the room if it was His intent that we should go and I do believe that staying home was best. 

Here is a little bit of what has been going on the last couple of days.  Thursday morning we had an appointment with the feeding therapist.  Eliana did better for her then (was really fussy the first time we saw her a couple of weeks ago).  After watching her, she didn't think that she exhibited signs of reflux.  She did think that at times the flow of liquid was too much for her and tried to work on slowing that down by tipping the bottle at a different angle.  (more horizontal)  I'm to work on feeding that way in addition to stimulating the muscles on her face and in her mouth.  We'll see if that helps any.  She also mentioned that she didn't think we were in a critical time frame or hurry for the Gtube. 

We (Eliana and I)  both took a long and much needed nap together on Thur afternoon prior to her physical therapist coming over.  She worked hard and is continuing to improve.  I think I mentioned last month about the scale she was being measured on and how she was already behind.  Well, she looked at the scale again and Eliana has improved 6 weeks worth in the last 4 weeks.  Yippee!!!  Way to go sweet girl!  The PT was very encouraging about her progress.

Friday, Eliana's ped called to see how she was doing.  (Isn't that so nice?!)  She had talked with a couple of therapists that had seen Eliana.  She wanted to try Eliana on prevacid to see if it helped any at all.  It would help if she has reflux or any other damage in her throat.  Even though we both think she has no signs of reflux, this is just a precaution to see if it can help at all.  I can see how she could have damage from the tube being inserted so many times so I'm glad to try something that might help.  We talked for awhile about how things were going and about our options for the future.  We are both thinking that the Gtube surgery is likely to be happening.  She wants me to call her on Monday to update on the cardiology appointment and on the prevacid.  On the prevacid, it is a dissolving tablet that I'm having a hard time getting to dissolve completely.  I've tried placing it in water and pouring water over it.  I am concerned that if it isn't dissolving completely that it could end up clogging her tube.  (I inject the medecine into her feeding tube.)  I would love any tips if anyone has them.

Saturday, Eliana and I venture out to lunch to celebrate a friend's birthday.  It was our first social outing with the feeding pump.  I thought it seemed like a good place to be with other Mommies and nobody else to have to watch out or care for while I was out.  It was a fun time with the girls.  Eliana didn't like being in the restaurant so much as she was a little fussy and wouldn't eat at all.  She did sleep some while being held.  Later while we were looking at books in a small homeschool store, she took a bottle and ate about half of it (2 ounces).  I was encouraged to see her improvement.  Tonight we had friends over to give out awards for our Keepers of the Faith club.  All in all, a busy and fun day!  A little much for Eliana, but it was good to see what it takes to go out and about. 

We are going to try to go to church tomorrow for the first time since Eliana was born.  I'm guessing it may be a hard and/or emotional time for me.  I'm not sure why I think that - but I do. 

I appreciate all of the sweet comments that many of you have left and I'm going to try to respond to them.  I continue to feel so very behind on so many things - especially thank yous.  I was thinking tonight of a very thoughtful gift from two gals Roger works with that was given to me just before Eliana's surgery.  It was a bag with a couple of magazines, mints, chocolate, lotion, kleenexes and gum to take to the hospital.  So sweet to think of the details of what I might need while I was in the hospital!  (If you are reading this - thank you Martha and Starla!)  I have so many people to thank!!!  If you are reading this and are  one of those sweet people - thank you!  I do intend to write notes, but it probably will still take me awhile.  It doesn't reflect my gratitude however on the many precious gestures and gifts with which people have blessed us.

It's late and I'm heading to bed.  Will work on updating more tomorrow - maybe with a bracelet update and some photos.

With love,

Leslie

 ETA:  Thank you Karen for posting on the T21 board about our feeding tube problems - and to the gals that responded to me here!   I appreciate your help and encouragment so much!!!  Will try to respond more to you tomorrow.  It's much too late here (2:45am) and I'm going to sleep now.

Feeding tube update

I could find nothing wrong with the pump or external tubing.  I did all of the checks and even ran the pump into a bottle and it worked just fine.  So, even though it wasn't what I wanted to do, I removed her feeding tube last night about 2:45am.  She was able to sleep through me doing this - with a lot of moving about.  I let her sleep through her next feeding and planned to put it in for her 9am feeding.  It was probably too long to let her go, but I hated to wake her to put in a tube as it's just really hard these days.   Her gag reflex is working very well and it makes this a real challenge.

Catherine came over to help and it was hard getting it in! I tried repeatedly to get it past her gag reflex and it just wouldn't go. I removed it a couple of times and just as I was thinking I might have to take her to the hospital to have someone else do it - it went down.

The tube near her nose keeps coming out a little and I'm hoping that it won't be like that as it will make it easy for a little finger to grab onto it. Just praying that this one will stay longer. It's just hard on both of us.

Thank you for your prayers. Feeding continues to be a big struggle here. I'm not seeing much to be encouraged about, though I'm still hoping. More and more I can see some benefits to having the Gtube surgery - though the thought of another surgery is not one I can dwell on for long.

Love to you all,

Leslie