Time ... where does it go?

I was pondering on my days and have thought for awhile that I might share what a day here looks like.  I know that it must be hard to imagine and I would love to have you know.  I have had dear friends offer help - and honestly I would LOVE that but some days don't even know what to suggest.  I'm so overwhelmed and sleep deprived that my brain has long since stopped being clear.  I have loved it when someone just decided to help in some way and then did it.  It's hard to know what to ask for sometimes.  I really am  happy and grateful to receive help though.

Here's what the last 24 hours have looked like at our house.

12:00midnight - Feeding Eliana.  She was awake so I first feed her by bottle until she fell asleep.  She took an ounce which for her is pretty good these days.  Then I hook up her feeding tube.  Her feedings involve warming breastmilk/formula and then adding powdered formula to this liquid to boost the calories.  Then the liquid is poured into the bag.  We check Eliana to make sure her tube placement is stlll correct.  This is done by attaching a syringe with air to her feeding tube.  Listening to her stomach with a stethoscope while pusing the air into the tube.  If the placement is correct, you hear a "whoosh" sound.  Thankfully we've always heard that!  Feeding by tube takes about an hour - less if she has eaten by bottle.

1:00am - Shut off the pump.  Disconnect the pump tube from Eliana's feeding tube.  Clean out her tubing with 1cc of water.

Go downstairs and do some prep for dinner for tomorrow.  I haven't cooked much at all thanks to many meals delivered to us - but this week I'm cooking. 

1:30am - Pump.  I'm still trying to express breastmilk.  It's hard and my supply is low.  She does occasionally nurse which is sweet.  I'm still not sure I can hang on much longer.  This has been physically and emotionally draining.  I often pump for about an hour at a time.  :(  Prayers for wisdom are always appreciated.

I use this time to check emails and try to respond.  I'm really far behind though and don't think I'll be able to catch up.  I've greatly appreciated the support I've received via email.  It's amazing the good of an encouraging word!!!  Don't ever underestimate the powerful effect of encouragment on someone else!   I also use this time to read the FIAR website - and to type in my blog.

3:00am - Time for another feeding.  After getting Eliana set up and washing some bottles I head to bed.  This is typically when I go to sleep.  I know - it's too late.  Between pumping and feeding it has just been easier to stay awake.

4:00am - Cut off the pump.

6:00am - Eliana's feeding.  This one is Roger's turn and I'm thankful to sleep through it!

9:00am - Time for another feeding.  When I go to check on Eliana I find that her pump part was not closed and formula has leaked out and onto her bedding.  I take Eliana out of the crib and set up another place for her to be fed.  I change her diaper and dress her.  Give her both meds.  Start the feeding.  Strip the crib linens and wash them.  Start to pump.

10:20am - End Eliana's feeding and my pumping.  The children have been watching Liberty Kids on tv and playing.  Rebecca does a great job of playing with the boys in the mornings!

Go down to start a crockpot dinner.  Talk with the children.  Get dinner finished and thankfully check on it a little later.  I forgot to plug it in.  So glad to have found that mistake now!

11:00am - Check on laundry.  Shower and dress.  Clean some downstairs.  Talk with the children.
Shower and dress.  Pack laundry bag.  Get children started on lunch.

12:00 noon- Time for the next feeding as well as time to pump.  Use this time to read my Bible, pray and read some online.

1:00pm - Stop feeding.  Prepare to leave for dr appt.  Yes, it is midday and I have done nothing but feed and pump.  *sigh*  Not all days are quite like this.  It's harder when I need to leave the house as I really have to watch the time.  It's much easier to just be home!

1:40pm - Cardiology appt at Duke.  I'm so thankful to be close to a great medical facility!  What a blessing!!  Don't have to wait too long.  We meet first with a nurse to check on her vitals.  I was excited to check on her weight gain.  She had gained 7 ounces last week in 5 days remember?  It had been 6 days since then.  When her weight came up it was in kilos first (I can't translate) and then pounds - 9 pounds and 2.4 ounces.  Only a 1.4 ounce weight gain.  I was disappointed to say the least.

Met with the cardiologist.  Roger came with me to most of the appts during the first 6 or 7 weeks.  With a major surgery coming up, we feel it's best that he spend the time at work now and I go to the appts alone.  The cardiologist felt that her weight gain was probably due to the amt she was consuming.  We hadn't changed her amt with the most recent weight gain - so that is what we are doing now.  Up to 85ml per feeding.  We are to watch for signs of her not being able to tolerate this amount (spitting up) and then decrease it if that happens.  He thinks her heart is doing well.  Her med amounts are still good. 

I told him that it was driving Roger a little crazy not knowing the surgery date.  He said he would work on it.  I told him that we were both fine with waiting and even pushing back the estimated date as that would be best for Eliana.  Dr. C told me that he thought we'd be able to plan her surgery - and not have to do it as an emergency based on how she was doing.  That was great to hear!  We should have a 1 to 2 week notice of her surgery to get things lined up at home.

We will see Dr C again in 2 weeks - well, 2 weeks and a day so that we don't have to meet on Christopher's birthday.  We'll see the pediatrician next week.  I like that Eliana is being monitored so closely.  She is in good hands.

3:20pm - Leave dr appt for home.  It's never a quick thing to go to a dr anymore.

3:45pm - Arrive home.  Exchange feeding bag for a new one.  They need to be changed every 24 hours.  Prepare formula and then prime the bag so that it is ready to go.  Eliana is awake and takes an ounce by bottle.  The rest of the feed is done by tube.

4:45pm - Finish the feed.

5:00pm - I pump again.  I talk with the children as they wander in.  I've used this time for reading aloud and doing some other things with the children - though not as much as I'd like.  Visit with my friend.

6:30pm - Work on finishing dinner. 

6:45pm - We are off of our 3 hour routine a little bit so I'm adjusting the times until we can get back on schedule.  Eliana eats some by bottle and then finishes by tube.  When she is finished I eat dinner with the rest of the family.  Then we clean up.

8:20pm - Decide to make a quick run to the craft store.  Two oldest go with me.  This is only the 2nd time I've left the house to run an errand since Eliana has been born.  Only the second time I've been without her.  Both were short times.

We buy beads at the store.  My daughter is making bead bracelets to sell to raise money for other children needing heart surgery.  She has been so touched by her sister's heart condition that she wanted to raise money for other children that might not be able to afford it.  She has mainly sold bracelets around the neighborhood.  She has raised about $80 (I think) so far.  I don't really know where she can go to sell these? (If you have ideas - please share them!)  I did call a friend who is going to let her sell them at a Mom's event on Fri night at our church.  So, she'll be busy making bracelets and working on a sign to prepare for this opportunity.

9:10pm - Arrive home and prepare for another feeding.  Admininster meds first.  Again she takes a bottle and then finishes by tube. 

10:30pm - Pump.  Talk with Roger. 

Then at midnight we start the feeding cycle again.  Some days feel better than this one.  I am looking forward to more time with my children tomorrow.  I am thankful that they are happy playing, reading books, watching some movies and entertaining each other when I can't be with them.  They love their little sister so much and really have done so well with the amount of time and care that she needs.  I'm so thankful for that.

If you have hung in this long ... bless you!  Not sure if this was interesting or helpful, but this was a day in our lives.

Blessings,
Leslie

Never a dull moment

I was just pondering this morning thinking I had nothing to write.  Things were seeming calm ... and that is a nice thing at times. 

It was a beautiful day here and Roger and the children were outside playing.  I had just hooked Eliana up to her feeding tube and was trying to finish up some laundry.  She started fussing and I thought she probably just wanted to be held.  I decided to let her wait a few moments while I finished sorting some things on the bed.  (I was in the same room with her.) 

Well, when I went over to see her, I could see her tube was across her face.  That happens when she moves around.  But this looked different.  I could see the tape still on her face ... but wait the tubing was green, not clear.  She had pulled her tube out again!  And during a feeding no less!!!  No wonder she was fussing.  The tube was still pumping food onto her (a little) and the bedding! 

I had to wonder if she just pulled it out quickly.  Did she even realize what she was doing?  Then as I started thinking about what had happened, I quickly became very thankful that she had not aspirated any of the food into her lungs!  Amd that the tubing had come out completely.  Thank you God for watching over my baby when I'm not!

Since she had eaten some by bottle and tube, I decided not to try to reinsert the tube until just before her next feeding.  It was nice to see her sweet little face without the bandages/tube for a short while..  The bandages seem to irritate her skin some too.  It did fade by the time we were ready to put it on again, but it may be worth looking into other options for her.

Roger came in to help insert the tube.  We said a quick prayer (and were joined by some sweet FIAR friends in praying too) and then put the tube in.  Thankfully it went in smoothly and easily.  Roger commented that I was getting to be "an old pro" at this.  Not something I really want to be an old pro at though!  I am very thankful that it has gone well both times we've had to do it at home.

So, this last tube lasted for 10 days.  That was pretty good.  I'm hoping for another 10 days on this one.

We will see the cardiologist on Monday for another heart/weight check.  She is seeming a little plumper to me.  She is also starting to sweat some.  I know that was one of the signs we were to look for of more heart failure.  I'm not sure if it's that or just the unusually warm weather we are having.   I'm sure we'll find out on Monday.

Eliana is seeming more alert these days.  I'm sure the increase in calories/weight is helping a lot!  She is even fussing more - which is unusual for her.  She is also "talking" and smiling much more.  I love this part!!!  Those cute little "baby conversations".  Do you know what I mean?  When she coos a litlte something and I answer.  Then she "says" a little something else and waits for me to respond.  So very sweet!

Hoping for a dull (read "calm") day tomorrow!  And if not, that God will walk with us through the tough spots!  He is faithful to be with us!

Blessings,
Leslie

This ought to make you smile ...

as it sure did us!!!  I just love big wide-mouthed baby smiles.  You can't help but smile back at them!  Roger caught this smile in his first attempt at a picture.  Didn't he do a great job?!



As a note of encouragment, a friend from the FIAR boards wrote to tell me that in her experience early smiles were a positive indicator of good things to come developmentally!  We hope so.  For now, we are just enjoying seeing happiness and delight in our little girls eyes and her beautiful smile!



Enjoy!

7 Ounces!!!

Yippee!!!!  (I need some more icons here!  Where is the one doing the happy dance?!!)   Eliana had her ped appointment today and she has gained 7 ounces in the last 5 days!!!  That is her biggest gain yet!    Our ped is thrilled - and so are we!  Eliana currently weighs 9 pounds and 1 ounce.  (Still smaller than her next oldest sibling at birth.) 

Our ped was also very happy with how her heart sounds, her movement (much more active now), her oral motor skills (she is trying to suck her thumb/hand and is pretty persistant) and even her body/head control.  It was really a good visit. 

She even commented that based on how Eliana is looking now we might be able to wait until April to have surgery.  I really want to get us out of this "yuck" season.  So many of our friends have been hit with this too - it's just everywhere!  Makes you want to stay inside and at home for sure!  

Our next dr appt is on Monday with the cardiologist.  How nice it is to only have 1 dr appt this week.  (What a comment from someone that is used to going many many months between appts for our children!)

That's all for now.  Don't know that I have time to get into the many other things on my heart - like nursing/pumping and how much to keep trying as well as schooling my children and working to creatively do this while we are dealing with such huge life issues with Eliana.  We continue to appreciate the support and encouragment from so many people.  I'm waaaaay behind on answering emails - but please know that I appreciate them so very much! 

With love and a happy heart,
Leslie

Good health

is such a blessing!!!  It takes having it removed sometimes to really appreciate the joy of feeling well.  Having experienced a difficult last year with my health (Hyperemesis Gravidarum) during pregnancy, I have so appreciated days when I felt well and was able to eat. 





I am thankful to report that all of my family is feeling well!    I am so thankful that Eliana has remained well!  Isaiah, our 5yo, also managed to escape this illness.  He was very lonely being the only well one and was so glad when he was able to be with everyone else.





We have a ped appointment today for another weight check.  We have been adding the additional powdered formula to boost the calorie content of her feeds.  Hopefully this has helped.  I can't really tell.  She seems content most of the time - and sleeps most of the rest of it.





Praising God for good health today.  I hope you are experiencing this blessing as well!



With love,

Leslie

Picture of the children

I so wanted a picture of all of the children at Christmas.  I had thought it would be a neat thing to share with others as well as to have for my scrapbook.  Well, with all of the illness that hit our house after Eliana came home, we found it was mid-January before we could get our Christmas picture!  This one is the best of the bunch.

Better and worse

Well, it's a new day.  I'm feeling much better emotionally than I was yesterday.  It's hard to feel so low, so sad and scared and frustrated.  I'm sure I'll have those times again and am thankful for the friends that are walking beside me during these struggles. 



I've been reminded of many verses in the Bible in which God is here with me - through it all - no matter how I'm feeling.  One of my favorites is from the book of Isaiah when God says that He will be with me when I walk through the fire and when I am in a storm.  It isn't if, but when.  I've been blessed not to have many huge trials yet in my life.  I'm in the middle of a big one right now though.  I'm hoping and praying to emerge better on the other side of it - and eagerly looking forward to reaching the other side.  It isn't in sight yet though.



On the physical side - I'm sick too.     My 2yo got sick in the middle of the night and didn't even wake up!  Poor little fellow.  I got sick a few hours later.  *sigh*  I was really hoping to be spared this sickness.  I was very thankful that I missed the sickness that wiped out my entire family (except for Eliana) just after she was born.  I'm not surprised though as my body is so wiped out I'm not sure how it could fight off much.



Please continue to pray for Eliana.  I'm worried about her getting it as it would be so hard on her body.  I think it would be difficult for a healthy newborn - much less one with a heart like hers.  Our 5yo is also still well and I'm hoping he'll miss it too.  About all we can do at this point is "wash our hands" like crazy and limit Eliana's exposure.  My ped also encouraged me to give her as much breastmilk as possible to help protect her.  I'm pumping now and hoping to be able to help my sweet little girl in this way.



We are thinking that we probably have a virus that seems to be sweeping through our city.  It's a relatively mild virus, but the downsides are that it is very contagious and that you remain contagious for up to 72 hours afterwards instead of the normal 24 hours.  That just makes keeping everything clean, kids away from their baby sister and trying to get well all the harder.  We've taken so many precautions to stay well.  The children and I typically go nowhere during the week!  We've cut out much of our activities and the dr appts we've added in are usually only Eliana and I.  Guess we can only do our best and it still is out of our control.



That's all for now.  We appreciate your prayers as always.

Battered and broken

I'm feeling so overwhelmed and broken right now.  Please pray.  We have 4 family members sick with some sort of stomach virus.  I'm hoping and praying that the rest of us don't come down with it.  (The 3 youngest children and I are currently well.)  I'm thankful for friends  - one who brought some food for us and many others that are praying.  My precious best friend has been over here helping me some today - please pray that she stays well too!

I'm still trying to pump and nurse Eliana.  Today has been very difficult though.  I don't want this to be what ends our trying to nurse. 

I'm also trying to deal with other news which is breaking my heart.  It's not mine to share yet.  

ETA:  Wanted to share a sweet moment today. I was holding Eliana and asked her "Do you love Mommy?"  She responded with the biggest smile I've seen to date!  It was just the right answer when I wasn' expecting one at all.



I know God is with me, but I'm feeling incredibly beat up right now.  I've more than passed my limit.  I have been sobbing all day long and am just worn out - physically, mentally, emotionally and spiritually.

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

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

Snow Day today ...

and thus we did not make it in to get Eliana's weight checked.  I debated about driving out in the snow as it didn't "look" that bad.  My Mom and  Dad are here visiting with us (while my dh is out of town) and both pretty insistant that we stay home.  I talked with my pediatrician later and she too was glad that we hadn't tried to get out with the weather being snowy and icy in places.

So, we are still waiting to find out how she is doing weight-wise.  We are going in on Sat morning at 8am to see our ped.  This will get us there before any sick folks.  A little early for my liking, but I don't want to be exposed to any crud either. 

The snow today was beautiful while it lasted which wasn't very long.  It was fun to see the children playing and building a snowman.  I wish my dh had been home to play with them in the snow as he is a much more fun Dad with snow than I am!  He's back home tonight from being gone at a conference this week and it's wonderful to have him home again. 

I'm still pumping and trying to maintain that for a little longer until we have more news on when surgery is likely for Eliana.  Still have a low supply and need to spend more time that I'd like to get what I do.  I'm hoping to try a couple of new things in the next couple of days to see if there is any improvement.

I appreciate the notes and comments from so many of you.  I'm truly humbled that there are people reading my words and praying for my precious daughter and our family.  What a privilege to have such precious friends - and strangers who are becoming friends.    I'm thankful for the many people that have been willing to be God's hands for our family.  It's a truly beautiful picture of the body of Christ to me.

Need to go feed my little cutie pie now.

Blessings,
Leslie