She Did It!!!

She drank 4 ounces from her bottle this morning!!!  She has NEVER had this much - EVER!  This was her complete feeding.  Now, granted it was in 2 parts - but it counts!  I fed her the first 2 ounces and she took about 15 minutes to eat that.  (Really wonderful and much faster than she typically does it..) 

I was using a 2-ounce bottle, so I refilled it and then she seemed not interested at all.  I decided to take a short break to see if that helped her.  Well, the short break ended up going about 45 minutes and then she took the other 2 ounces!  Oh, what a sweet moment!

It's encouraging to see that she CAN do it.  I know that it's still a lot of work for her, but praise God that she can do it!  I'm still not sure what I can be doing to help her - if anything.  Still waiting to hear from the feeding folks.  We'll see. 

For now, this has just made my day!  This is her best feeding of the day usually and I am praising God for this small step.  I know it may seem like "not a big deal" - but for a little girl that has struggled now for 4 months (pretty much her whole life) to eat - this is a very big deal!!!

Just wanted to share my joy! 

With love,

Leslie

A few photos & prayer requests

Hi Friends,

I just wanted to share some photos with you.  I've been trying to take more of them - and missing my camera that is in the shop!  I do hope to have it fixed soon.

Eliana has been working on rolling over each day.  She sometimes gets "stuck" on her stomach and has a hard time getting her arms out to where they need to be.  She also likes to roll onto her side and play with whatever - or whoever is nearby.



She also loves to stick her feet into the air.  This just makes me laugh.  She started doing this after surgery and does it a lot.  It's funny sometimes to see her feet in the air when I wake up and look over at her in the crib. 



She is laughing more and more!  Sometimes now I can tell when something has tickled her funny bone.  Christopher had her giggling today by moving her up and down.  It looked a little rough to me - but she loved it!  I have a short video clip, but can't figure out how to share that.  Will post if I can figure it out.

Eliana is also continuing to pull out her tube.  Today when she pulled it off her face was VERY irritated.  It's probably the worst it has looked since surgery.  (It also smelled badly which I'm wondering if it was from water getting under it when I bathed her?)  She also scratched it when she was moving her hands near her face and made her cry. 



I'm not really sure what to do to help her skin.  I'm putting duoderm on her skin - and it does help!  You can see the clear place on her cheek where this bandage was placed.  I thought perhaps if I just put the clear tape on that and not on her skin that it might be the answer.  Well, it might - but she pulled it out within 30 minutes of it being put on.  I'm putting aquafor on her skin to help with the dryness.

There's the first prayer request - healing for her skin and answers if there is something more we can do to help her.

Second continues to be feeding.  She has actually had a couple of good feeds today and yesterday where she took 2 ounces several times.  I'm hoping and praying that this trend would continue.  She also still sleeps through at least 3 feedings per day.  We still have a ways to go before we are saying good-bye to the feeding tube.

We have an appointment with the pediatrician on Tuesday.  We are hoping to see one of the feeding specialists this week as well.  I called on that had been recommended - and that had agreed to see me - but the appointment time they had for me was late June!  That's obviously too long to wait.  Please pray that we would be able to see the person/s that would be most helpful for Eliana. 

Outings.  We've (Eliana and I) made a couple.  Yesterday we went out briefly to watch the boys launch rockets that they had built as part of the Contenders of the Faith club.  It was really neat - except for Christopher's being caught in the top of a very tall pine tree.  We are hoping a friend can shoot it down with a crossbow.

We also went out to the bookstore last night with a friend.  It was really odd being out with a baby and being ignored or not hearing nice comments.   Except for one very nice lady that just went on about how cute Eliana is.  She asked about her feeding tube - what it was and why she had it.  She was just sweet and encouraging.

We are planning to attend/work as vendors at our upcoming state conference.  My sweet Mom has given up already purchaed tickets to hear Beth Moore speak so that she can come and stay with my children.  I had told her that it was fine that she had plans - and that we would work it out.  She called me back soon after our conversation though knowing that she could give the tickets to someone else because she wanted to come and help us out.  I'm blessed with wonderful parents!

This has gotten long - and it's late - so I'm going to close.  Remember to laugh today - love on your family - and praise God for He is good!

With love,

Leslie

Happy Mother's Day

***I wrote this on Mother's Day, but wanted to wait to post it until I had pictures.  I hope you enjoy!  ***



What a delightful day I've had.  I think that this has been one of the best Mother's Days ever for me. 

I was able to sleep in today which was a treat in and of itself.  Joshua (7) really didn't understand this.  He wanted to wake me up to show me that he loved me.  Roger kept trying to explain that it showed love to let me sleep.  He asked which is more important - sleep or love?  I can tell that sleep just doesn't rank high on his list of priorities.  One day he'll understand. 

So, guess which child woke me up first?  Yes, Joshua.  He had made me a badge that read "Best Mom" and wanted me to wear it.  I promptly put it on and then went back to sleep.  He came in again later to show me a valentine that he had helped Eliana to make.  She scribbled some on a heart shaped note that he had written for her.  Very sweet!



I was treated to breakfast in bed.  Quite a breakfast it was too!  An omelette, bacon, english muffin, fresh fruit and a strawberry smoothie.  I also had beautiful flowers on my tray and the food was garnished with fresh herbs.  Isaiah was very interested in sitting with me and was ready to help me eat whatever I thought I wasn't going to get to. 

Before I went downstairs, I had a treasure hunt that Rebecca had made.  The first clue was taped to Eliana.  I had further clues that led me around the upstairs and then to the top of the stairs where I was blindfolded and led downstairs.  I was greeted by a large "Happy Mother's Day" on a chalkboard.  Then a table filled with flowers (3 arrangements), cards, candy and a gift.  All around the room were many, many colored pictures that Rebecca, Joshua, Isaiah and Daniel had worked on all morning. 



They each delighted in giving me the card that they had made.  I delighted in receiving them!  What sweet sweet children I have!  (Most of the time.)  Christopher made a "card" for me on the computer - two actually.  One was a photo of Eliana that he had "written" on using photoshop.  The other was a note made of race car tracks from one of his favorite games. 



I am so very glad to be a Mommy!!!  It is truly the most amazing experience.  I am thankful for each of our children and all that they bring to my life and to our family.  Once again, I know that I am very blessed indeed!  I encourage you to hug those that you love today!  Take every chance that you have to show those you love how much you care!





Love,

Leslie

Notice anything?

Take a good look at the picture.  (I'll give you some hints ... spaced out a little bit if you want to guess.)



Look at her cute little face.  See it?







Or rather do you see what is missing?







Yes - she pulled out her tube again!  It's been 3 days and even though I have retaped, she is good at getting it out!

I don't remember if I mentioned that I noticed last week we were running low on her feeding tubes.  I called and ordered more.  I was very specific about the type, the size, the brand name, the model number.  I really want the type that we currently use.  I ordered 15 to go along with our months' supply of feeding tube bags.  The gal on the phone asked if I was sure I needed that many.  I told her that Eliana pulled out her tube on average every other day at times.  So in a month - yes, I would need that many.

Well the shipment arrived, but I didn't check it right away.  I checked it on Monday when I realized that we had only 1 tube left and discovered that the wrong size was sent!  Only 3 were in the package and it listed that it was backordered.  I thought perhaps they sent this to hold us over until the others arrived.  Thankfully I called.  The backorder was for the same wrong size.  I told the gal on the phone about my conversation last week and as I explained she remembered talking to me.  She asked if we could make do with what was sent.  I told her that no we couldn't.

The size that Eliana needs is a 5Fr (the diameter of the tube) and we were sent an 8Fr.  Her nose is so tiny!  And I wonder if it hurts her throat at times when I have to keep putting it in.  It can't feel good to have had that down your throat for over 3 months.  Also the last 2 tube placements have been rough!  So no, I wasn't willing to try a bigger tube.  She told me that we should have the new tubes by the end of the week.

Well on Monday Eliana pulled her tube and I placed the last one in.  I was hoping that she would just leave this one in until the new shipment arrived.  Well, tonight she pulled out that one.  I have a couple of options.

1.  Go to the hospital and ask for a tube.  If they won't give me one then I take her to the ER and have them place one for me.

2.  I use a different brand tube that I have on hand.  It's the right size but not the same style.  I like the style we use as I'm comfortable with it.  I know how far to place it based on the markings on the tube.  I'm comfortable with this one - well, as comfortable as I can be.  The other tube is about 3 feet long (the one we use is 16 inches) but at least it is the right diameter.

Since it is night, Roger isn't home, and I'm home with the 3 little ones - option 2 looks good to me.  I go to our supplies and get the tube ready.  I measure it against the tube she has pulled and mark it with tape so that I'll know how far to insert it.  (I've also been taught how to measure against her body, but wanted a double check on length.)  I get everything prepared and wait.

Shortly before Roger arrives home, I look again in our supplies.  I am greatly surprised to find ONE more of the right type of tube!  It wasn't buried in our supplies so that I just missed it.  It was sitting right on top.  What a sweet thing to see.  It's a small thing, but I'm thankful that by whatever means, God has given me this tube.  When I tell Roger about it, he asks if I just dug around to find it.  I told him no.  I had even moved the supplies around tonight looking for everything and had not seen it.  I looked earlier in the week and didn't see it then either.  I had counted prior to Monday and had seen one in there - the one we used on Monday.  Thank you God for this small gift that has your loving hands all over it.

The tube is in now.  It went in pretty easily with a minimal amount of crying.  That is a praise and thank you as well!

Love,

Leslie

PS  There's another entry from earlier tonight just below this one. 

Therapy ... lots and lots of therapy

There are so many things we take for granted.  Skills that are mastered by babies every day without any special help or intervention - they just learn on their own.  I have loved watching my babies learn and grow but never really thought about all that went into each new skill that they mastered.  I did get a new perspective when my friend Catherine's son was born with Down syndrome.  I learned a lot from watching all that they did to teach and help him learn.  Never did I imagine that one day it would be my turn.  I didn't really want a turn, but here it is - my turn - nonetheless.

Hmmm ... where to start on what has been going on?  Probably feeding since that is the big one!  We are still using the feeding tube.  Still trying to bottle feed as well, but she isn't really taking in much more than she was before - even with not doing full feedings twice in a row.  (The cardiologist said that we could try only bottle feeding for 2 feedings per day to see if hunger helped her to eat more.)  I really don't think hunger is going to drive her.  There is more going on that needs to be addressed.  I'm not sure how - but am hopeful that with some help we will figure this out.  

Today I met with Eliana's case manager (she manages therapy services in the home until age 3) and an occupational therapist (OT) with that agency.  The OT did an evaluation of Eliana and agreed that she needed specialized feeding therapy.  I have hopes of meeting with someone that is in a local hospital which is outside of the coverage of the therapy services in the "natural environment".  (One of Catherine's therapists that has experience that would help Eliana.)  The OT thought that this was reasonable since feeding is a very specific skill and she needs someone trained to help her.  Someone that understands the issues of cardiac, feeding tubes and Down syndrom.  He was very supportive and said he is going to write his report to that effect.  We'll have to wait and see if this is approved to have them cover therapy outside of the home.  Now, I'd MUCH rather have someone come here, but if the people that are most experienced are not able to do that, then we will go to them!  (Incidentally two feeding therapists that I've spoken with think that hunger-driven feedings  are not the way to go with Eliana.  I think I'm finding it hard to trust my Mom instincts sometimes because so much is new to me - and there are so many "experts" involved in her care.  It's affirming to know that my instincts are on target.)

The OT observed some of her skills, asked questions and wanted to watch a feeding.  Eliana was cooperative for awhile then started getting tired.  She ate 5cc (1/6 of an ounce) and then fell fast asleep. 

Next came our session with our Physical Therapist (PT).  She works in helping Eliana to strengthen various muscles.  Babies with Down syndrome have hypotonia which is a low muscle tone all over their bodies.  This can make it harder to many things - probably most things.  This is why they need to learn new positions to strengthen muscles that may not be being used properly.  For example, often when Eliana is relaxed her arms will be out to her sides - not into to her body like most infants.  She has weaker shoulder muscles which we are working to help strengthen which will make it easier for her to reach and grab things.  (I hope some of this is helpful.  I know that for many Down syndrome is new - and a lot of unknowns.  There is a lot to learn.)

Today we were working on rolling.  I told her PT that she almost rolled over today.  She got her legs all the way around, but couldn't get her hands out of the way.  We worked on a couple of exercises to help teach her how to do this and strengthen the muscles needed to do this in her legs and shoulders.  Towards the end of her session while we were talking and just letting her play - she rolled over!!!  We were so excited to see this!    Eliana's milestones are really going to be celebrated I think.

We also introduced a new toy - one with toys that dangled to try to get her to reach up.  She learned this really quickly.  I had pulled this toy out of the donation pile - it's one of Christopher's toys.  The PT told me not to get rid of it as it is perfect for Eliana.  She learned this quickly too.  Her PT even commented that she thought Eliana had learned this skill quicker than anyone she had seen.  I so appreciated this encouragment.

The PT left an evaluation that she had done a couple of weeks ago.  I was reading it and all was fine until I got to a part at the end in which Eliana's motor skills were measured on some scale as 2 month 1 week when she was 4 mo and 2 weeks.  This just made me sad.  I hate to think that she is behind already.  I know that is part of it - that skills will come only more slowly than the average child.  The last line of the report was encouraging though.  "She is still recovering from cardiac surgery and her gross motor skills will probably accelerate."  Yes that is my hope as well. 

I've been practicing some of the games and exercises with Eliana.  It's really just a more intentional way of playing with her.  I can see her copying and learning some of those things.  She is learning - my precious little girl.

Eliana and I also went out tonight.  This is one of our first outings.  We haven't been many other places that weren't medically related.  I told someone the other day that I thought that Eliana in her first 4 months of life has had more medical appointments than ALL of my other children in their entire lives - COMBINED!  We don't visit the doctor often, though Eliana has more than made up for that.

Since her cardiologist said we could start to go out - we did.  Roger's work had a family day event.  We wanted to introduce Eliana as the people there have been so supportive and encouraging to our family!   Really, really wonderful in so many ways both large and small.  What fun it was to be there and to have so many people excited about seeing our sweet girl.  She was held and loved on and enjoyed.  I love seeing other people enjoy our little girl.  I think that has always warmed my heart - but it touches it more deeply now.  I sometimes wonder how she will be received by others - so far, we have been blessed tremendously by the response of others to her.  I love that people think she is cute - even cuter than her photos some commented to me tonight. 

She is asleep at the moment after her feeding.  (We tried a bottle while we were out, but she only took 1/2 ounce.)  She has had a very full day.  It's been a good day.

With love,

Leslie

2yo Funny

Apparently I have more to learn today about not getting irritated.  I posted this - or so I thought - even choosing some different colors for the fonts.  Imagine my surprise to see that this post was blank - just a title.  Not sure what happened, but I'll try again.

Earlier today Eliana was laying on my bed and Daniel was playing with her.  When I needed to move her I told him that I needed to get her.  Here is the conversation that followed.

Daniel:  "No move Eliana.  She my baby."

Me:  "No, she's my baby."

Heard from another room - my 5yo jumps in:  "She's everybody's baby!"

Daniel insisting on his point:  "No, she my baby!"

Me wondering asks:  "Well, who is my baby?"

Daniel thinks it over for a minute and then responds:  "You go buy another baby."

This made me chuckle.  I thought he might say that he was my baby - not that I needed to get another one.  Oh, the minds of children are so funny!

Hope you enjoy a laugh.  I've posted a couple of entries today and one last night if you are just now catching up.  I hope to post more later on therapy updates. 

With love,

Leslie

Time marches on

Today my little girl is 5 months old.  Can it really be?  In some ways it seems much much longer than that.  My life has been turned upside down for what seems to be ages.  Sometimes it feels like life has just gone on around me while I've been here struggling.  The day of her birth was traumatic for me unlike what I had anticipated and hoped the day would be like.  And yet her smile is new, sweet and fresh.  She is learning new things all the time.  She has captured my heart!  

Just one month ago my little girl was having her open heart surgery.  I was holding onto her little bow and longing to hold her.  It was a long morning of waiting, made sweeter by the presence of friends with us.  It was a day of much prayer and praise.  Thank you God for all of the work you did!

I like looking back - especially with my babies and children - marking milestones.  Looking back with Eliana is harder.  Probably a lot of things with her will be harder - though maybe not.  I know that the joy is sweet just like with my other children.  I know that I love her deeply and cannot imagine life without her.  I'm thankful for my little girl.

I'm thankful for those that cared for my daughter a month ago - the anesthesiologists, the surgeon, the nurses.  I'm thankful for my family and friends that have cared for all of us.  I'm trying to keep my focus on all that I have to be thankful for each day.  It's a good habit.  At the moment I'm trying not to be irritated  with bickering children (that I won't name) and that the "N" key and space bar on this computer don't work very well.  (I wish it were a different letter other than those that are used so often - Q and Z would have been my choices.)

Going to close as this is getting hard to type.  I'm going to try to figure out how to respond to posts that ya'll leave for me.  I appreciate each and every note.

Love,

Leslie

Cardiology Update

Well, I meant to update earlier, but my 2yo decided that taking the keys off of the laptop seemed like a fun thing to do.    Not sure why he did it, but it made it hard to use and I don't get to the downstairs computer too often these days.  (Kind of reminded me of the day of Eliana's surgery when the G and H keys weren't working.  A challenge then - and many more keys are not working now.)

Eliana had an appointment with her cardiologist yesterday.  It's our first time seeing him since she left the hospital.  Thankfully there were no additional tests or bloodwork yesterday!  She weighed in at 13 pounds and 3 ounces.  That's up a pound in the last 2.5 weeks. 

Dr. Carboni checked her heart and thought she was doing well.  His concern was her feeding too.  The number of calories she is consuming per day is not high enough to continue to gain weight.  I shared with him the proposed idea from the feeding therapist of going "cold turkey" with Eliana's feedings during the day using a bottle to feed.  This would lead her feeding to be hunger driven.  He said "No".  He didn't think that this was a good plan for Eliana.  I have to concur.  I thought I'd do it if it really was best - but it didn't seem like a good plan.  It really is hard to know what is best as I've already had to do many things for Eliana that were/are outside of my comfort zone.  Isn't that what Moms do though?  Whatever is necessary for their child! 

He said that even though I've seen changes in Eliana that it will typically take at least a month to get over the effects of heart failure in terms of her endurance.  Makes sense doesn't it?!   We are almost at that marker, though I'm not expecting any sudden changes now.  It helps explain why things have been hard - and slow.  I guess I did expect drastic changes with feeding - especially when she ate 3 ounces just a day after her surgery.  He told me that he wasn't surprised with the struggle and had expected it.  He obviously hadn't shared that before which is fine too.  I think with the heart surgery looming I probably didn't need to know.

Dr Carboni also told me that the feeding tube may have "doomed her" in the eating area.  I can see that, but we also agreed that we really had no other choice.  When she went into heart failure she just wasn't able to eat.  She needed the weight and additional time for a successful heart surgery.  I don't have any guilt about the choice of the feeding tube.  I truly felt it was the only - and best - option at that time.

So, we are to increase her formula to 27 cal/oz (adding more powdered formula to the ready to feed) and increase her feedings to 120cc (4 ounces).  Adding other things weren't an option due to the small size of her feeding tube.  We may skip 2 feedings back to back either in the morning or afternoon and allow her to feed from the bottle as much as she wants.  She is not to go more than 6 hours without eating.  (I got all of this in writing which was really nice.  It's added to my notebook which is almost FULL!  My notebook has written records of all that she has eaten for the last 4 months, all meds taken, procedures performed,  meetings with doctors, amts of pumped milk and more.)

I tried the new routine this morning.  She was tube fed at 6am while she slept.  She was awake around 8am and I fed her a bottle about 9am.  She took 2 ounces (half of the recommending feeding).  She fell asleep about 11:30.  She woke up and ate about 12:30 and took in 40cc (less than 1.5 ounces).  Next feeding was at 3pm when she took 17cc (just over .5 ounce) and then I gave her a full feeding with the tube.  We'll keep trying this, but it looks like it will be a long road!

Dr Carboni talked with me about the possibility of a G-tube if feedings continue to be a struggle.  She needs to be at least 6 weeks out from heart surgery before that would even be a possibility.  The NG-tube (what we have now) is not a good long-term option.  The G-tube would be a surgical procedure to put a tube in directly to her stomach.  This would allow continuous feedings at night.  (Can't do that with this tube as it's placement can slip.)  It would also get the tube out of her nose/esophagus.  I can't imagine that it feels good and sometimes wonder if it's irritating to her.  Especially when she takes her tube out often. 

Did I mention that last night I was carrying Eliana and walked into the kitchen.  I saw one of her feeding tubes - with tape attached - on the floor.  I wondered which little boy had taken one from the trashcan - and why.  Silly me - Eliana had taken it completely out with none of us noticing!  How does she do that?  It's 16 inches long!  We were all there in the same area too!  She is good at that removal.  Placement again was hard like the other night.  Not sure what is going on and wish I had thought to ask her cardiologist.  I can always phone him - he did make sure to tell me that at the appointment.  He has been a wonderful doctor!

Oh, we are officially medicine free now too!  I'm to watch for signs that she may still need it -  rapid breathing would be one like when she was in heart failure. 

Our next appt with Dr Carboni is in 4 weeks.  That's a long time for us.  He has said that we will begin moving away from heart being the focus and into pediatrics.  Though clearly Eliana will be seeing a cardiologist for the rest of her life - just not as often.

I think that's all for now.  Here are some specifics we would love prayer for:

1.  Feeding - That's really the big focus now.  She has a loooooong way to go before she is eating enough on her own.  A really long way to go.  Pray that she would learn to eat more at a feeding.  Pray for wisdom for us and her care providers as to the best methods to use in getting her to eat.

2.  Health - That Eliana would continue to stay in good health.  Dr Carboni said that it would be fine for us to start getting out.  It's been 5 months and Eliana and I really haven't been anywhere - except lots and lots of doctor appointments.  Pray that we would make wise choices as to where we go with her.

3.  Family - Pray that we would begin working on some good routines and uses of our time.  Our last 5 months - and even a lot of the last year - has been not the norm for us.  We need to find a new normal.  I need to work on more consistency in chores, school work, play time and individual time with the children.  We also need to make choices about commitments we make and want to be wise about how much outside of the home we can commit to doing.  I'm still not really ready to do much of anything yet.  I'm just emotionally not ready to do much of anything at all right now. 

4.  Time with God - Pray for our spiritual time to always be a priority.  Pray that God would continue to teach us, shape us and make us more like Him. 

5.  Feeding Tube - This is a small thing.  Could you pray that Eliana's feeding tube would stay in until we get a shipment of new tubes?  We are out of the type that she uses.  I ordered more a week ago, but they sent the wrong size.  (Even after a long conversation about the right size, style and type that we need.)  The ones that they sent are too big for her.  It just isn't an option in my mind to use them.  The ones we need are on back-order.  Hopefully they will be here by the end of the week.  (Wish I had known this yesterday so we could have tried getting one while at Duke.  Oh well.) 

It's still hard to figure things out some days.  I can't really explain it - though perhaps if you have been through some sort of trial you may understand that moving on and finding a new normal is a challenge.  I know God will lead us to it - and that it can and will be a good place with Him.  This journey is not a place I've chosen to go, but know that much good has come and will continue to come from having been there.

I remain abundantly thankful for so many, many things - my precious daughter who is fighting so hard, my wonderful family and friends, my sweet Saviour.  I do have much to be thankful for each and every day.

With much love,

Leslie

Cardiologist appointment on Monday

Hi All,

I want to share about Mother's Day - it was great - but want to upload some photos first.  Will try to do that by tomorrow.

Tomorrow (Monday) Eliana has an appointment with her cardiologist.  This will be his first time seeing her since she was released from the hospital.  I'm not sure what tomorrow's visit entails in terms of testing.  I would love prayers that all would go well for her.  I'm guessing she'll have to have blood drawn and historically that hasn't been an easy one for her at all!  I have no idea if any other tests are scheduled. 

I'm going to be talking with him about Eliana's feeding.  She isn't doing all that well.  The feeding therapist that we have met with wants to have us eliminate her tube feedings during the day.  She is hoping that if hunger is driving Eliana that she will eat better from the bottle.  Right now she eats about 1/4 from the bottle and the rest from the feeding tube.  That's a lot of ground to make up.  We will be supplementing with the feeding tube at night to make up for what she is missing during the day.

Please pray for wisdom for our cardiologist in knowing what is best for Eliana in regards to feeding.  We will need to figure out if this is alright for her.  Also if we cut back on her tube feedings, we will need to know how much she has to have per day in terms of calories and also in terms of fluid.  The balance of fluid has been critical for her with her heart issues.  I'm not sure how this changes with her heart repair.

The feeding therapist feels that we are at a critical place.  If we wait she is concerned that it will make it harder and harder for Eliana to eat on her own.  She said problems could last for years.  (Years???  I didn't want to hear that!)  This is one of those times that I just have to trust that what they are telling me is best.  I'm trusting that God is leading us to the people that we need to see and that the advice/counsel we are receiving is best for Eliana.  Letting go and trusting can be hard, but I really don't have any other choice.  It doesn't do any good to worry, so I'm trying to keep on trusting!

I'm also still trying to figure out the best bottles to use for Eliana.  She is compressing the one we are currently using which obviously is less than ideal.  I'm  hoping to see an OT (occupational therapist) while we are at Duke tomorrow.  She agreed that I could page her even though she is only supposed to see "in-patients".  She was helpful to us when we've been in the hospital the last two times.  Pleae pray for wisdom here too!  I know that I may make mistakes in this area - and probably many others too - but I'm just trying to do the best I can and pray for wisdom for all of us that are caring for Eliana. 

I'll post more when I know something.  It will probably be late tomorrow.  Have I mentioned how much I love your comments?  I truly appreciate each and every one of them.  Ya'll are a blessing to me and I often read them over and over again.  I am thankful for you dear friends!

With love,

Leslie

Counting my Blessings

Today has been a better day.  Thank you all for your prayers, notes of encouragment and phone calls.  I am so very blessed to have so much support!  I am very thankful too!

As I was talking with God today, He reminded me to count my blessings.  What a good idea.  There are far too many to list here, but I thought I'd share some with ya'll.

1.  A God that loves me and is faithful to me.  He carries me through trials.  He is true, good and pure.

2.  A delightful family - both immediate and extended. 

3.  Friends - in real life, across the miles and many that I've only met via computer - that have loved, encouraged and supported me through so much. 

4.  Health.  I'm so very thankful that Eliana hasn't gotten sick!!!  Even when our family went through 2 bouts of illness this year she remained healthy.  I hope this trend will continue!

5.  A clean house.  I don't know about you, but it doesn't happen often enough over here.  Seems like if I can get one room clean, there is a big mess being made in another one - or several other ones.  This week some friends paid for a cleaning service to clean our home - top to bottom.  It was wonderful.  The gals did a super job!  It was a very thoughtful and much appreciated gift!

6.  Meals - We continue to receive meals from friends.  What a blessing to have this provided for us.  So much of my time is spent trying to feed and care for Eliana and it's nice not to have to deal with food planning and prep.

7.  Laughter - Eliana sweet laugh is a treat.  Just yesterday a friend called after reading my last blog entry to encourage me.  She prayed with me and one of the things she prayed was that Eliana would laugh again.  Last night when my family was gone, Eliana and I went for a walk.  I carried her in my arms and talked with her.  At one point she started to laugh.  What a precious sound to my ears - and what a sweet answer to prayer!

8.  Prayers - We have had so many prayers lifted for us and so many answered.  How could I be anything but thankful!  Tonight Eliana pulled out her tube ... again.  Actually this one has been in since Monday which is pretty long for her!  When it was time to put the tube back in, it was midnight.  My 14yo was up, the other children asleep and my dh still at work.  As I was getting ready a bottle, I heard Eliana scream.  Not a scream I've heard before and it scared me.

We arent sure what upset her, but she was upset!  I tried to calm her and had a hard time doing so.   Anyway, I tried to get her settled and she really struggled getting settled down.

She still wasn't real settled and was pretty unhappy, but I thought I could get it in quickly and just have it over and done with. Maybe a bad idea. As I was putting in the tube, she really started crying, then gagging. Then making choking sounds and I didn't have it all the way in.   I begin to wonder if I've put it in the wrong way (hasn't happened before) so I yank the tube out.

Eliana then seems to be choking still. She was making odd noises like there was fluid or something choking her. Several times I thought she was going to throw up, but she didn't. I tried to suction her - nothing. The sounds she was making just scared me. Sometimes it is just frightening to be a parent - especially when you wonder if you know what you are doing. She just kept choking, seeming like it was difficult to swallow and it was just scary!

She finally fell asleep and I just held her for awhile.  After Roger got home, I tried again.  (Placement #22 - yes, I'm still counting!)  This time with success!  She cried, and even gagged, but it went!  Oh, here's a funny. Once I had gotten her tube in, checked placement, taped it down to her face and just thoroughly upset her - Christopher looked at me and said "Happy Mother's Day".

Happy Mother's Day indeed.  I'm one very blessed and very thankful mama!!!

Love to you all,

Leslie