Picture of Eliana at the hospital

She has her feeding tube in - but is still a cutie! 

Yes, her hair does stick straight up like that!  We've tried combing it in a variety of ways after she is bathed, but when it dries, it sticks straight up.  My oldest son loves her hair.  Actually we get comments on her great hair wherever we go.  After having had 5 "bald" babies, seeing all of this hair was quite a surprise.  She definitely has personality! 

Visit to ped today

Nothing too exciting.  We visited our ped today for a weight check.  I was disappointed that she had gained NO weight.  My ped said not to worry about it as she thought Eliana is looking good - face filling out some.  We talked about what we'd been doing and figured that the lack of weight is probably due to me not upping the calorie content of her feedings.  I had stopped doing this on Monday as we were having troubles with the feeding pump getting clogged.  We switched to liquid formula/breastmilk instead of the powdered formula to see how it would work.

I wouldn't have thought this made a huge difference in the total amount of calories - but evidently it does.  So, we are back to upping the calorie content to liquid feedings.  (Not using the powdered for now.)  The cost of the liquid formula is really high!  I told my dh that this would really make us appreciate having breastfed the others!  We've saved a lot of money over the years. 

Otherwise, Eliana is healthy and doing well.  We'll go back to the ped next Tues and then are scheduled to see the cardiologist the following week. 

Please continue to pray for all of us.

With love,

Leslie

Happy Valentines Day

What a day this has been - with surprises for all of us - some sweet and others less sweet. 

I started my day by sleeping in!  My sweet daughter woke me for Eliana's 9am feeding.  Up again at 10am for the end of the feeding.  Up again at 11am as Eliana was fussing and I put her in bed with me.  We then got up for good at noon for another feeding.  It was so nice to be able to sleep!!!  My sweet daughter helped with the younger boys so I could rest.  What a sweetheart she is!

All of this meant that I did NOTHING special with my children for Valentine's Day.    I hurried to get the boys dressed and ready to go out to music class at 12:30.  My dh was taking them which left a quiet house for me with only my oldest and youngest here.  My dh called about an hour later to let me know that one of the boys had gotten sick in the van -just a little bit, but enough to cause them to come home.  :-(  We have been nowhere this week!  I'm not sure where we could have found any sickness.  After talking more, we think it wasn't sickness, but food going down the wrong way.  He wanted to eat again quickly after getting sick - and hasn't been sick since.

Well, the afternoon was spent with the sick one being sequestered, two playing outside, one playing and one napping.  Still nothing to celebrate the day.  Though my oldest daughter has been making Valentines and even helped the boys to make them too.

My dh went by the store to pick up some food for dinner and worked with the children to make our  traditional heart shaped pizza - with I Love you in pepperonis.  We also had a ceasar salad and rice krispy treats cut into hearts.  My daughter decorated the table beautifully - pink placemats and napkins  (folded very  fancy) and candy hearts on the table around the vase of roses.  We had a fun meal  with lots of laughter inspired by the telephone game. 

Afterwards I sent the children on a scavenger hunt.  I had made up 11 clues.  Two for each of them to figure out and a final one to do together.  Each clue had a small bit of candy to eat as they searched.  It was fun to watch them run and then think.  The final clue was new books for each of them.  Most of them were thrilled.  The 5yo said "I don't want books!".  I think he had dreams of a big stash of candy!  We looked through the books together though until he realized that they  were ones he would really enjoy.

My oldest two sons had also made up scavenger hunts too.  The hunt by the oldest was hard - and the "prize" at the end a little questionable.  *grin*  It was him - hiding in a closet!  

So while the day started off a little less than exciting - it ended with a lot of fun.  It was especially sweet when at dinner my 5yo commented that "This is the best Valentine's Day ever!". 

Thank you for redeeming this day God and for the fun memories we were able to make. 

Blessings,
Leslie

Well ... I did it again!

The opportunity came today - for something I was hoping to avoid.  I was told that I couldn't avoid it, but I was still hoping none the less.  When I went to feed Eliana at 3pm, I noticed that she was holding the tube - all of it!  She has grabbed it before, but never really done much tugging on it.  My oldest son had just put her down in the crib a few moments earlier.  I'm not sure how it  happened so quickly!   I called him in and we both just looked her.  She was blissfully unaware of all of the thoughts swirling in my head and of what lay ahead for both of us. 

I knew then I was going to need to reinsert her tube and just started praying ... and praying... and praying.  I called my friend next door to come help - no answer.  I then went and posted a quick prayer request on the FIAR boards.  As I was headed back upstairs to get things ready, my son told me that my friend was just getting home.  I called again and she thankfully was able to come over and help.  Another friend arrived before I put the tube in and was there to help encourage and hold Eliana's little hand.

This really is a two person job - at least for the novice!!!  Eliana sucked on her pacifier while I put in the tube.  My friends helped hold her hand and her hand when it was loose again.  She didn't cry and was so good about it.  It went in pretty easily - though seemed a little "stuck" at the end.  I checked placement - and it was in correctly!!!  It was done!!! 

I'm so thankful for this answer to quick prayers -for friends to help, for guidance of my hands and for peace for both Eliana and I during this procedure.  Thank you God.

Now ... I'm still hoping I won't have to do it again, but I'm sure it will be easier the next time around.

As always - thanks for your prayers!

With love,
Leslie

She has gained weight!!!

My precious little girl has finally gained some weight!  She is up to 8 pounds and 10 ounces.  Still smaller than that last baby I had (birth weight), but at least we are going in the right direction.    When her cardiologist walked in, his first words were "She's at an all-time high".      Yes, the feeding tube is working like it should - getting some food into her and allowing her (and her heart) to rest.  I have no doubts that this was the best thing for Eliana.  I hope and pray that there are no negative consequences of the tube for her, but can definitely see the benefits of it. 

Her heart is also doing well.  He feels we may be looking at late March or possibly early April for surgery now - unless of course things take a turn for the worst.  He wants us to have another weight check this week  on Thur and again in another week.  We'll be back to see him in 2 weeks.  All good news!

We've been dealing with her feeding pump malfunctioning - and trying all sorts of things to fix it.  I've pulled out the manual and read on fixing all of the problems.  I finally talked with someone at the medical supply company and  he suggested it might be the powdered formula settling in the tubing.  I did a rinse of the tubing and he was right.  This caused me to be concerned about Eliana's tubing and I mentioned this to her cardiologist.  He checked out her tube and said it was fine.  Whew!  (Though if it had to be replaced then I was in a good spot to have it done!)

I keep hearing that it isn't if the tube gets pulled out, it's when.   Sigh.  I am really hoping to avoid that.  I know that I can do it, I just don't want to do it again.  I'm not a medical or even a very scientific kind of person.  I've learned more about anatomy and medical equipment than I ever wanted to know.  You know you'll do anything for your children though!

I even asked my oldest if he would help me if her tube came out - just to hold her head still.  He shook his head "no".  I emphasized that it would just be holding her still.  He again said "no".  Then told me that he wasn't comfortable with that.    I told him that I wasn't comfortable doing it either!   He reminded me that I was the parent and didn't have a choice.  True.  Guess I'll need to call a friend for help if/when I have to do that.  Lucky for me to have a best friend right next door that wouldn't mind helping at all.

Thank you to so many of you that have reached out to encourage me and my family in so many ways.  I'm truly touched by your words and know that God is using them to help me.  I am blessed in many ways.

With love,

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