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