I just want normal!

Warning before you read this ... I'm in a tough place right now and this will probably not be pretty at all. 

I just want my life to be normal again.  I don't really want a new normal.  I just want my baby girl to be alright!  And yes, I want her to be hormal.      It's so hard to lay down the dreams that I had for her ... for our family ... and for what our life would look like with 6 children.  I've always admired others who went through such struggles and had amazing faith and testimony as a result of it.  I never wanted to be one of those with a story to tell though.  Sounds shallow I know - but it is the truth. 

Now that I'm in the midst of the biggest struggle I've faced yet, I just hope that God can do something with me.  Redeem me in some way.  I know He can do it - it is just wondering if I'm able to let Him do the work in me that He wants to do. 

I long for the days when a tough day was dealing with bickering, messes and things not going according to my plans.  I don't want to have medical equipment in my bedroom.  I don't want to know my way around a children's hospital.  I don't want to be counting ounces and measuring time by feedings and pumpings.  I don't want to have to wake a baby to feed her because she doesn't wake to ask for food herself.  I don't want to be sequestered in my home because the idea of my baby getting anything could be so damaging to her.  I don't want to be waiting and waiting for the day when my baby is in such heart failture that she will require open heart surgery.  I don't want to have to deal with special needs.

There ... all the things that I don't want to have to deal with.  Does it sound so selfish?  Like a lot of self-pity?  I'm not really sure, but it is where I am right now.

I'm so very thankful for the encouragment of others and know that I'd be in a much worse place without that.  It's hard to even let people know how to help - I really dont' know.  I just know that this is a hard place.  One I never wanted to visit.  One that I hope I emerge from better than I am now.

Help me Father.  This load is so heavy.

We are home!!!

I'm so thankful to be home again.  I missed my children and the peace of my own home.

Roger had his turn inserting the NG tube today and did a great job.  We had the same nurse that encouraged me earlier today and she was equally encouraging of Roger.  She told us we worked well together as a team.  (This is definitely a two-person job for the novices!)  I am hoping and praying that the tube stays put!  Eliana is wiggly when she is awake so we'll see. 

We stayed at the hospital for Eliana's 3pm feeding.  Tried out the pump that we were taking home and had some problems with it - cut off too soon and didn't administer the current dose.  I had a nurse help me in getting the remainder of the formula in and we wondered if the problem was the bag we had used.  It was one that we used with the hospital pump which was slightly different from this one (more updated model). 

We had 2 hours to get home before the next feeding was due.  By the time we packed, left the hospital and drove home, we had about 30 minutes to get settled and set up the pump and supplies.  I tried feeding Eliana from a bottle first.  She did a great job and drank about 30 ml in 15 minutes. 

Then we tried the pump.  I flooded the chamber on the first bag and didn't know how to fix it.  Then I tried the second bag and just after I primed the pump and got it ready, it said "dose delivered".  She had gotten nothing!  I tried everything I could think of to fix it - no luck.  Roger called the company and got the person on call.  He agreed to drive over to our house to help us.  He needed to first drive by the company to pick up another pump so it wasn't going to be a quick visit - not in time for her feeding. 

We tried again with a bottle and she drank 60ml.  She did a great job!   i was a little worried about feeding her without the pump.  It takes soooo much from her - just wears her out.  One of the nurses said it's like one of us running a long distance race.  When it takes her a long time to eat, she burns as many or more calories than she is ingesting. 

Two men from the medical supply company came over to help us.  They even needed to call someone else about the problem.  They ended up not being able to get the pump to work correctly and gave us a new/different one.  They were very nice and very helpful.  I was so thankful that they were willing to come out after hours to help us out.  One of the men told us it was because she was an infant that they were willing to come so quickly.  Thank God for  this as I don't think I could have felt comfortable about waiting until morning.

The next feeding went well.  She took some by bottle and then fell asleep.  We finished the feeding with the pump.  I'm glad that she can get the calories she needs with the pump.  It wasn't something i wanted to do, but I know that it is the best option for her right now.  We did all that we could to help her eat and she just needs this help.

Each week is a matter of waiting and seeing how she is doing.  We are hoping that she responds well to the feeding tube and is able to gain weight.  We are also hoping this doesn't place too much stress on her heart.  We won't know until it happens.

I'm still working on pumping.  I've been told we can try nursing again if she/we want to.  Since she is getting the calories she needs from the tube, this is an option for us.  I'm not sure yet what we'll do.  I'm still debating about this.  I would love prayers for wisdom and peace about the decision.  The lactation consultant recommended pumping over the week-end and seeing if the lessened stress of  feeding helped any.  I can reevaluate after that.

It's late and I need to get some sleep.  I appreciate your prayers, notes and encouragment!  Will write more tomorrow as I'm able about the tentative timeline for surgery and what we know (and don't know) about the plans for the future.

Love,
Leslie

Encouragment

I've been so encouraged by the words and prayers of others.  I have been reflecting on the comments others make and wondering if they are even aware of the impact of a few words on spirit.  It's amazing - the power of words.  They can bring healing, hope and joy.  The converse is also true.  I want to use words to encourage, build up and reflect God's love.

Just today as I was again trying to insert the feeding tube into Eliana, I was joined by a supportive and encouraging nurse.  She commented that I had steady hands.  What a boost to my confidence as I'm trying to learn a medical procedure to perform on my infant daughter.  One that I really don't want to have to do, but realize that I will probably need to do.  It helps to hear a nurse telling me that I've done a good job and that I'll be fine doing it at home.  It helps to hear her say "what would you do if you were at home" when I'm unsure about something so that I learn to trust my instincts.  (Though clearly I'd seek help when it's needed.)

Am I using the power of words in the best way possible with my family?  Are my children encouraged to know that they are doing a great job when trying something new?  Do they realize the strengths that I see in them daily?  Do they know how much I love them - not anything that they do or don't do - but them, just as they are.  I love my children and want to encourage them to grow and learn.  I want to do this also with my husband, family and friends. 

What an incredible responsibilty and opportunity we have each day to use the power of our words for good!

Blessings,

I did it!!!

Arrrgggh!  I just typed in my entry, finished it and hit a wrong button on the computer and the whole entry is gone!  *sigh*  I'll try again.

I was able to put the NG tube into Eliana today.  Thank you for the prayers for this procedure.  It went very smoothly.  I was understandably frightened about inserting a tube into her nose and running down to her stomach.  We had a wonderfullly encouraging nurse helping Roger and I.  We got everything ready - the syringe, tubing, tape, etc.  They helped to hold onto Eliana and then it was my turn.  I just couldn't do it.  I waited, prayed and waited some more to get up the courage to start.  They patiently waited and encouraged me and I finally just did it.  It went very smoothly.  Thank you God!

I was afraid of hitting the back of the nose and causing her to gag - and then having difficulty moving beyond this point.  Thankfully it just went in so nicely.  I have one more time to try this before going home and Roger needs to do it once. 

I'm not sure how often we will need to do this.  We've gotten conflicting information on how often it needs to be changed.  Obviously if Eliana pulls it out, we'll need to reinsert it.

We are still planning to go home tomorrow.  I'm looking forward to being home again with my whole family.  We will be looking at surgery sometime in tne next 6 weeks is the prediction. 

Thank you again for prayer!

Leslie

Day 2 at the hospital

I thought I might have a little more time here - to sleep and post on the computer.    What was I thinking?!!!  I went to bed about 3am last night.  I really wanted to post here and update folks.  I am so thankful for the many prayers that are being lifted for our family. 

Eliana is doing well today.  She has had 2 blood draws (both in her heel).  The first didn't seem to bother her, but the second one upset her greatly!  It didn't help that her blood was flowing slowly and it took a while to get it complete.

I met with 2 speech therapists today to help with her feeding.  They were helpful in showing me some things I could do with Eliana to help her eat more effectively.  It's become a very difficult thing for her to do as it just wears her out!  We are trying to offer her food via bottle first for about 15 minutes or until she is all tuckered out.  Then she gets the rest of the feed in the tube.  She is taking about 20-30 ml via bottle.  She is doing such a good job!

I've met with LOTS of people today!  Lots of doctors, nurses, nutritionist, etc.  All have been very nice and are doing all that they can to educate and help us walk this difficult medical path as best they can. 

Prayers and Praises

• Praise for our cardiologist.  He is straightfoward and caring.  One of the other drs scheduled a follow-up appt for Eliana next week.  He told us that our cardio would not be seeing people in clinic next week and so we'd be seeing someone else.  I wasn't really excited about this - seeing someone new that I don't know and that doesn't know Eliana.  Later when our cardio visited us, I mentioned not being able to see him and he told me that it was not a problem.  He would work it out so that we saw him.  I'm so thankful that he is willing to work around whatever scheduling he has to see us!


• Prayer - I will need to insert the feeding tube successfully 3 times before they let us go home.  I really don't want to do this!!!  I obviously will as I would do anything for my precious daughter.  Please pray that I'm a quick learner and that it doesn't hurt Eliana at all to have me "practice" on her. 


• Prayer for weight gain.  We want her to gain weight so that she is in better health nutritionally.  This will help her to do better in the surgery and the recovery.


• Prayer for her heart.  We don't know the effect of increased feeding/fluids on her heart.  It may cause more distress.  If so, the surgery would obviously come sooner.


• Praise - our cardio is working to plan a surgery date for us.  He knows that we will need to make care plans for our other children and is willing to try to set a date in March for the surgery - with the understanding that things may change.  I appreciate that he is sensitive to our family's needs.


• Praise for the wonderful family and friends that we have!!!  I am so thankful that Roger and I can focus our attention on Eliana and know that our other children are in good hands.


• Prayer for the health of our family.  There is so much yuck out there.  Please pray that we can not get it!  We are trying to be very careful about our exposure and have greatly limited our time outside of the home. 

We are hoping to go home tomorrow!  Need to run as someone is here to deliver medical equipment.

More later if possible.

Love, Leslie

In the hospital

Well, we are in the hospital.  I'm pumping and taking a few minutes to try to update folks about our sweet Eliana.  She is currently awake and happy having just finished her first feeding with a tube.

We arrived at Duke this morning and met with our cardiologist.  He talked with us and explained a number of things to us.  He elected for an NG tube for now as the best option for Eliana.  He doesn't feel that we have time for a G tube.  He said that it would need to be in place for a good 4 to 6 weeks prior to heart surgery to make sure that it is healed and to reduce the risk of infection.  He doesn't feel that we have that much time before her heart surgery. 

Not quite what we expected to hear but I trust it is for the best.  I am thankful for the doctors that we have as they are caring and sensitive to us.  Taking a break as Eliana is starting to fuss.

Roger and I agreed that we were ready for admission to the hospital today.  Eliana has been feeding so poorly!  It's been getting worse by the day and today has been by far the worst yet.  She has often been awake and would take about 2/3 of an ounce and then nothing.  She wouldn't fuss and also wouldn't eat. 

Getting admitted took a long while.  It was about 5pm before we were in a room.  Shortly afterwards Eliana was examined by a doctor.  The nurse then came in to insert the tube.  Roger held her head still and I had her hands.  The tubing is small - it would have to be as her nose is so very tiny.  It is also long!  She didn't like it - no surprise there!!!  It was hard for me to watch all of that tubing going in and going in and going in.  She cried a lot afterwards.  I think she's cried more today than she ever has before.

After getting her settled they started the feed and she took it well.  2.5 ounces!  No reflux or gagging.  She did a great job.  I held her through the feed as she was fussy.  She has finally settled down and it taking her second feed now while asleep. 

I talked with most of my children on the phone.  I miss seeing them and being with them.  Daniel wanted to give me a big hug!  Hearing "I love you" from them is just the best!  How blessed I am to have such a wonderful family!!!  Part of my conversation with my 5yo was really cute.  

Isaiah:  Mom, do you know what I want for Christmas?

Mom:  I don't know, what do you want?

Isaiah:  I want a baby.

Mom:  You want a baby like we got Eliana this past Christmas?

Isaiah:  No, I want a baby for me.

Mom:  What would you do with a baby?

Isaiah:  I would let you feed it.  Would that make you happy?

Mom:  Yes, very happy.

We still have a lot of unknowns in terms of what will happen next.  It all really depends on how Eliana is doing.  It does not look like she will be getting a Gtube.  If she needs one it would be after her heart surgery.  Really hoping that will not be needed!!!  I'm hoping she'll be able to eat on her own then.

In terms of timing, surgery could be as early as next week if she isn't doing well.  Thus far her heart appears to be doing well - not in such distress that surgery is necessary right now.    We are thankful that she isn't in discomfort now too.  He still thinks that it will probably be in the next 4 weeks.  She would most likely be on the feeding tube through her surgery.

That's really all I know for now.  I'm so very sorry that my little baby has to endure all of this.  I'm praying specifically that this time of difficulty will draw me closer to God.  I'm praying that for my family too.  I'm also praying that this would be something draws us closer together as a family.  We are really needing to help and depend on each other.  Praying too that God would be glorified through this. 

I've been meditating on Phi 4:6-8  I find that my mind can be plagued with emotions that don't help me and can't be from God.  Guilt - wondering if I should be doing something or not being doing something.  Guilt about how I'm spending my time and am I doing enough.  Fear of the future and what it holds.   Fear for my daughter and her heart.  Sadness over the loss of dreams that I had for my daugther and our family.  Loneliness and isolation over having to stay away from virtually all activities and people.  This isn't where I want to live my life!!!  I want to focus on things that are pure, good and true!  I want my mind to turn to God, to follow Him and to rest in His strong arms as He carries me when I don't have the strength to do it myself.

Do not be anxious about anything, but in everything by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.  Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable - if anything is excellent or praiseworthy - think about such things.  Phil 4:6-8

God has been bringing this passage to me repeatedly.  I'm trying to listen. 

I have so much to be thankful for - family, friends and a God who loves me completely!

Thank you dear friends for your continued prayers for our precious daughter.  Here are some specific requests for our family

• Feedings for Eliana would improve.  I would love for her to be able to feed orally and be supplemented with the feeding tube only when necessary.  Hopefully getting to the point that most/all of her feeding is done orally.


• Feeding tube would stay in place!  Also that Roger and I would feel comfortable placing the tube, using the tube and any other equipment that comes with the tube.


• Family - that we would learn patience, grace and abundant love through this time.


• Doctors - wisdom in treating Eliana and for knowing when she will need surgery.


• Wisdom in the decisions we will be making about and for our family.  Juggling the needs of a little girl that has a lot of medical appts with our other 5 children.


• Marriage - that Roger and I would continue to learn how to best communicate and work together as a team knowing that God can and will work best through both of us.


• Children - that they would be patient with each other, willing to help and understanding of what is going on.  Rebecca is having an especially hard time with Eliana's needing medical care. 

It appears that we will likely be in the hospital until Thursday - that is Eliana and I.  Roger is currently home with the other children and here at the hospital when they are with friends.  I need to go as it's time to pump again.  I'm sure I've forgotten something, but I'll write more when I'm able.  Roger has brought a laptop for me to use while I'm here in the hospital.  Isn't he thoughtful?!  I can't receive emails, but can read messages here.

Thank you sweet friends for walking through this with us!

Love,Leslie

The next step ... a feeding tube

Well, we visited the ped this morning.  She wasn't seeing patients today, but when I had her paged she called back to have us meet her at the office.  I really wanted to see this ped as she has seen us weekly and knows Eliana - her history, her struggles, etc.  I am so thankful to have someone that is so commited to helping that she was willing to come in to see us.

Eliana has lost 2 ounces in the last 2 days.    My sweet little baby girl.  I tried to feed her while we were there - and she would only take a small amount as has been her pattern for the last 48 hours.  She was awake, but just wouldn't eat.  The ped thinks she is just worn out.  Too tired to make the effort to eat.  Poor sweet little girl. 

Our ped called our cardiologist and they agreed that the best course of action would be to get an NG tube for the short run in order to help her gain some weight so that she could handle a surgery next week to insert a G tube.  I had really not wanted to go this route.  I had high hopes because she really does have a good strong suck - when she is not in heart failure.  I'm hoping this will be a quick way for her to get some help and that she will be able to return to feeding by bottle soon!

We are meeting with the cardiologist tomorrow at 11am.  After that, Eliana will be admitted to the hospital for her NG tube.  We are to be prepared to stay overnight - and hopefully be allowed to come home the following day.

My head is swimming.  I am so very tired that I am not feeling so overwhelmed - or maybe it's because so many precious people are praying for us!!!  I wasn't able to go to sleep last night until about 5:30am because I was so worried about Eliana.  I was up again about 8am and have been going ever since.  I do hope to get a nap sometime - maybe when I finish updating/pumping.

I know that this is what is best for her.  Still hard to deal with the feelings that accompany having my little baby needing to return to the hospital.  I am much more comfortable with the idea of a G tube after the responses from others with experience.  I am hoping that having the NG tube a short time will cause no harm to Eliana and her speech/oral skills.

ETA:  Forgot to mention the good news.  Eliana's heart is doing well.  The meds are still working as they should and her heart rate is good.  Her liver also looks good.  I'm thankful that she isn't in distress in this area. 

Please keep praying for our precious daughter and our family.  We are in the midst of trying to sort through what we will be doing tomorrow ... child care, when and how much time Roger will be with Eliana and I and any other misc details.  Please pray for wisdom for Roger and I as we make decisions.  Please pray for peace for all of us and for the chaotic nature of the last 7 weeks to be something my children are able to handle with grace and love.  Pray that these trying times will draw my family closer to God and closer to each other.  Obviously pray for our sweet Eliana's health.

Will continue to update as I can.

Blessings,
Leslie

Feeling afraid

Our sweet Eliana is still struggling to eat.  She has had 2 days of her worst feeding since we've kept records.  She just won't eat - or not much.  I'm here in tears.  I've just spent over an hour with her and she ate less than 1 ounce.

We'll be calling the ped in just a couple of hours.  I'm not sure what will happen next.  Please keep praying for our little girl - and for wisdom for her doctors.  And peace for her parents.  I'm feeling scared.

Struggling to Eat

I've never experienced the struggle to eat with one of my children like I have with Eliana.  Trying to get in 20 ounces into her tiny body is so tough!  And something we have yet to accomplish in a day.  Interestingly, I was reflecting back on my pregnancy with her and noting that there were MANY days in which it was hard for me to take in 20 ounces of fluids as well.  I know it isn't related, but I can remember it seeming like soooo much to try to drink - and just impossible to do. 

We have had a hard time over the last two days in getting Eliana to eat.  She received a shot yesterday morning and I thought perhaps some of her tiredness and lack of desire to eat was related to that.  I know that sometimes babies can sleep a lot more after a shot.  Dont' think it should last this long though.  Yesterdays numbers (ounces drunk) were equal to our worst day so far. 

Today  she won't eat much either.  It's a struggle to get her to take even 2 ounces.  I need to go try to wake her and try again.  *sigh*  You just can't "make" someone eat.!

It took me an hour today to pump 2 ounces and much longer than that to try to get her to drink it.  I'm hoping things change soon.  If not, I have been encouraged by many that the feeding tube would not be a bad thing.  I'm thankful to hear from those that have experienced this as it does calm my  heart.

Sorry this post is such a downer.  I'm feeling a little discouraged after yesterday's good weight gain.

Blessings,
Leslie

Weight check today

I woke up bright and early this morning - well, it was early but I probably was anything but bright!    I'm really not a morning person - especially when I get to sleep as late as I have been the last couple of weeks.

Anyway, Eliana was bundled up and at the ped office by 8am.  This was to avoid any crowds or sick children and to be the first one seen.  We were thrilled to find that Eliana has gained 4 ounces since Monday!    This is almost an ounce a day!!!  This is huge for her.  Our ped was also thrilled with her weight gain.  We haven't been able to get in 20 ounces per day but closer to 18 on average.  Thankfully this seems to be working.  Way to go Eliana!

Our ped called the cardiologist and we won't have to go back there until next Thur instead of on Monday.  This gives us a little more time to grow and get bigger.  I'm guessing we'll learn more with each visit, but at this point the surgery doesn't look quite so imminant (though I'm sure that could change at any moment).

The one thing that was a little difficult to hear was discussion of a feeding tube.  I've kind of resigned myself to the fact that this may be inevitable for Eliana.  It sounds like it is just a part of being a "heart kid" that she will have to go through.  I have also felt comfortable knowing that we've done all that we could to get her to eat and that if it isn't enough then the feeding tube is a good next step.  I've been prepared myself with thoughts of an NG (tube through the nose and into the stomach) tube, but today the ped mentioned a G tube(surgery to put a tube directly into the stomach).  She thought this might be easier on Eliana.  I was a little surprised by this and didn't ask the questions that are now running through my mind.  I would obviously prefer she not need additional surgery and this one seems ... I don't know , yucky for my little girl.   I know that I can call back my ped and ask questions and that's probably what I'll do as she is really great at answering all of our questions. 

So, that is where we are today.  Great news on the weight gain!  We'll go back to card in 5 days and back to the ped a week after that assuming things stay as they are in terms of eating and distress.

Thank you friends for your love, support and prayers!

With love,
Leslie