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

The meaning of a name

I'm often asked where her name came from and I honestly don't remember exactly.  I read it somewhere online during my pregnancy - the end of it.  I've had the name Lydia picked out for a girl for a number of years (and still love the name), but somehow it just wasn't the name for this little girl.  We debated while in the hospital as to which name was right for our daughter and prayerfully chose Eliana.  I couldn't even remember what her name meant - only that it was a nice meaning. 

I found this definition and pronunciation guide on-line and thought I'd post it here. 

The girl's name Eliana \e-lia-na\ is pronounced el-ee-AH-nah. It is of Hebrew origin, and its meaning is "the Lord answers".

I'm not sure what God is answering with our precious daughter.  All of her medical conditions certainly were NOT what we had prayed for - and in fact were what we had prayed would not happen.   I know that God has a purpose for this precious girl's life and her place in our family.  I'm not sure what He has answered but I trust that in time the meaning of her name will become more clear to us. 

Blessings,.
Leslie

Most recent visit to cardiologist

I've been wanting to write and update since our appt on Monday, but just haven't found the time.  It's early now and I'll try to catch up on what's going on around here.

We visited the cardiologist on Monday to do a weight check.  We had tried VERY hard over the week-end to get as much food into Eliana as possible.  I had questioned before whether we had tried hard enough and feel confident in saying this time that we definitely had done all that could.   We managed 20 oz on one day and it was lower on the others though not too much.  I was feeling optimistic that we had accomplished what we needed to do.   We were so disappointed to see that she had lost weight on Monday!    She was down to 8 lb 3 oz.  Then we wondered if this might have been due to the diuretic she was taking.  The Dr thought this was possible.  In looking at Eliana he was pleased with her response to the meds she is taking.  He thought her heart sounded better and the fluid around her lungs seemed better too.  That was the good news for the day. 

We are to go back to our ped on Thur for another weight check - and then to page our cardiologist with the results as he is out of the office on that day.  (Have I mentioned that we are getting really good care?)  If she has not done well, then we are to see him again on Friday.  It sounds likely at this point that she would be admitted to the hospital for a feeding tube.  I had really wanted to avoid this, but it may be what is best for her to gain weight at this point.  Our dr tried to assure us that this wouldn't be so bad, but it's still hard to imagine.

The path from here remains unclear - it all really depends on how Eliana is doing with her weight gain.  We obviously don't know from day to day what the future holds and this remains a time to just trust and do the best that we can during each day.  If she doesn't do well with her weight gain, the feeding tube is the next step.  She may be kept in the hospital with this or we could possibly be trained on how to do this so that we could bring her home (after a stay in the hospital).  Our cardiologist thought we were "educable" on this.  When Roger asked if we could do anything wrong in inserting the tube we were told that the tube had two places it could go - the stomach or the lungs.  Obviously we would want to know we were doing it correctly!  How long she has this is again dependant on how she is doing.  If well, then that could postpone her surgery.  If not, she is likely to have surgery soon.  The cardiologist thought it probable that based on what he has seen thus far, that she would be having surgery next month (Feb).

It is hard to even think about.  I've looked at some photos of babies after surgery and it's hard to imagine my little girl having to go through all of this.  I know it's inevitable, but I still don't like to think about it.  We were hoping to have some more time for her to grow and get stronger before having surgery.  Also to get out of RSV season to help her as well.  It looks like this may not be the case though.

I'm praying that whatever is best is the course that will be taken.  Part of me thinks that getting the surgery behind us will help us to move forward without the questions and limitations of her heart.  The other part of me wants to wait if her being bigger, stronger would help.  Ultimately, it is out of my control.  Learning to give it all up - control  - is a tough lesson for me.

As I'm typing all of this, it seems pretty "factual" and that's probably  because I'm so very tired!  Four hours of sleep - and hoping for more - just isn't enough. 

I'm still pumping as now I'm wondering if I can just hold on a little longer if surgery is sooner.  I really don't know.  Im not sure I'd have enough milk at this point anyway or even if my supply can be increased at this point so far from delivery.  *sigh*  Nothing has been easy this go around.  Nothing.  I'm soooo very thankful for the support of friends and family. 

Thank you for keeping us in your prayers!
Leslie

Ups and Downs

I am learning to look at the small things in life and be thankful!  It's so easy to take good health for granted and yet when you don't have it - it can be so consuming.  I have learned this lesson repeatedly through my pregnancies.  I have Hyperemesis Gravidarum (incredibly severe vomitting requiring much medical intervention) which makes being pregnant hard.  Though as I said to my daughter once - and she reminded me repeatedly - "It is worth it!". 

Feeding is tough at times!  I've felt some guilt over the last couple of days wondering if I had been "trying" hard enough to get food into Eliana.  Had my goals and efforts been lax?  If I'd tried a little harder, would she have taken more food?  Why do we Moms beat ourselves up sometimes?  It's hard to get a good perspective on things at time when we are in the thick of the struggle.

Yesterday we got in just over 20 ounces!!!  This is the most ever!  It helped that she had the first feeding of the day at 12:15am and the last at 11:15pm.  Times like this and I think - great, we can do this!  Today has been much harder.  We've struggled to get just 2 ounces in at a feeding and this sometimes taking up to 90 minutes due to her falling asleep.  During the last feeding she was even awake - and just wouldn't eat any more.  I just stopped then and acknowledged what God already knows - I am not in control!  I need to learn to just let  Him be in control and rest comfortably in His arms.  Trying to find a balance between doing what I need to do and resting in Him is a challenge - and one that I need to learn.  I'm sure I'm going to have lots of opportunities to learn this.

I was reminded this week of verses that I love and which are a good thing for me to focus on now.

Finally, brethren, whatsoever things are true, whatsoever things [are] honest, whatsoever things [are] just, whatsoever things [are] pure, whatsoever things [are] lovely, whatsoever things [are] of good report; if [there be] any virtue, and if [there be] any praise, think on these things.  Phillipians 4:8
So many things to learn - for Eliana and also for the rest of our family.  These aren't lessons that I wanted to learn.  I just wanted to be home with my healthy baby adjusting to the routine of having a newborn in our family.  God obviously had other plans - plans that have been so very different from my dreams.  It's been hard to rest in the knowledge that He has plans to prosper us when it seems like my world is crashing down at times.  It's then that I need to turn my thoughts to Him - and to things that are pure, honest and lovely.  Lord, I want to keep my focus on you!

Thank you dear friends for your continued prayers and encouragment!

With love,
Leslie

Heart Failure

I remember the first time I heard those words in relation to my newborn daughter.  She was not  quite 2 weeks old and we were meeting with her cardiologist.  He told us that she would need to go into heart failure prior to her surgery occurring.  I just looked at him with tears in my eyes and then said that it sounded horrible to hear that!  He tried to assure us that it sounded worse than it really is and that heart failure in a child is less dramatic than in an adult.  He also told us it would be gradual and that both he and our pediatrician would be watching her with us. 

Fast forward to yesterday - our weekly meeting with our pediatrician.  We are having Eliana monitored for weight gain in addition to her heart.  We were disappointed to find that she had only gained 2 ounces over the last week.  Not nearly enough.  The detailed log I keep of her feeding showed a downward trend over the last 5 days as well.  As we had our appt, several other signs (one being an episode of rapid breathing) alerted our ped that perhaps she needed to be seen sooner by our cardiologist.   We were scheduled for cardio on Feb5 and our ped thought this too long to wait.  When she said she wanted us seen sooner, I glanced at my watch and noticed it was 5:30pm - too late to do anything about it then and figured I would just call in the morning to reschedule.  To my surprise, our ped. went to a phone in the hall and paged our cardiologist and then set up an appt for the following day!

I love how thorough - and also encouraging - our pediatrician is to us.  She was leaving town the following day and yet wanted to make sure we had someone to call - at any time - if we had questions or concerns.  She called in one of the other  peds who gave us her private numbers in case we had any needs.  What wonderful care we are receiving!

Heart Failure
Words you just don't want to hear associated with anyone - much less your newborn. Eliana is in the beginning stages of heart failure. She is not in distress at this point, but things are definitely getting harder for her.

I know that this is a step that needs to happen. It's part of the normal development of the lungs that then puts more pressure on the heart. It has been gradual, but it's still hard!

The cardiologist was great today. He is calm and reassuring which is comforting. He is concerned about her weight and the amount of calories she is taking in. He prescribed two meds for her - one to strengthen her heart and the other to help eliminate excess fluid in/around her lungs. We are to start those today. We are also to try to get 20 oz per day into her of higher calorie formula/breastmilk. This will be tough - as we are averaging about 16-17. We've come close to 20 but never reached that.

We have a couple of days to see if trying to get more in her feeds, more calorie content to her feeds and meds to see if that makes a difference in her weight gain. We go back on Monday.

At this point there are a lot of unknowns. It really just depends on how she is doing. If there is no improvement, she may be admitted to the hospital for a feeding tube. Hopefully I would be able to stay with her and learn how to do this so we can bring her home. If she is doing poorly, they may keep her and possibly schedule surgery early.  At this point we just have to be patient and wait. 

The cardiologist doesn't want to prolong our attempts to improve things if they really aren't working as it is a given that she will need surgery. I know that they really want her to be bigger/stronger before doing the surgery as it's better for her, but they will do it when she shows she needs it.

Her feeding this afternoon was really poor - spilling a lot from around the nipple of the bottle - like she was trying to get some air around it? If she continues like this ... well, it won't be good. She has had a strong suck and done well eating and this is a change for her. I was visiting with my lactation consultant during this feed and she commented on how different this was from the other times she has seen her eat. She wants us to see a speech OT - and hopefully will be able to arrange that for us when we return to the hospital on Monday.

I'm about to the point now that I'm not thinking nursing is going to work for us. She "can" nurse, but it's just too hard for her to do right now. I have treasured the times that she has been able to nurse.  This has always been such a sweet part of my relationship with my other children - and I hate to give it up.  I'm not sure I can last through her surgery pumping though.  I've struggled with a low supply - and honestly have tried sooooo many things to boost it.  Some options aren't available for me to try due to Eliana's heart.   I've gotten so much encouragment in this endeavor, but even today felt my lactation consultant letting me know it was really alright to stop whenever I needed/wanted to. She told me that she admired my efforts and was surprised I'd been able to last this long.  She also told me that we were on her mind often and in her prayers.  She has been a great support!  I just wanted to give it my best shot - and to do all that i could to make it work.  This is just hard for me personally for a number of reasons, but I can see where stopping might be what is best.

I appreciate your prayers and encouragment so very much!!! I appreciate your emails too! I know that I owe emails to a number of people - but just have so little time to type and this seems a good way to get the news out to a lot of people. I do appreciate your notes and encouragment though. This is a very tough time for Eliana, my husband and I and our family.

Please pray for the meds to help Eliana's heart to function better so that it buys her time to get stronger/older/bigger before her surgery. 

I am so thankful to have the prayers of so many faithful friends as we walk through this valley.

With love,
Leslie