Wednesday, January 31, 2007

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. 


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!

Saturday, January 27, 2007

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,

Friday, January 26, 2007

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,

Thursday, January 25, 2007

Words ... the power to heal and also to hurt

What a journey this has been.  I've learned so much - about so many things.  I am thankful for the work that God is doing in my heart and in my life even though this isn't a path I would have chosen for myself.  I've learned more about the power of words - the healing effect of comfort and encouragment as well as the damaging effect of careless words.

I remember in the hospital the nurses telling me over and over what a beautiful daughter I had.  That gave me great encouragment and hope.  I knew that she looked different from other babies and wondered what the reaction of others would be to her (something I'm sure I'll continue to have to face as time goes on) and just hearing their thoughts on the beauty of my little girl was a sweet balm to my spirit.    

I've continued to appreciate the comments on what a cute baby we have - she really is cute!  I also have appreciated the people that said "congratulations" to us.  We do have a new daughter!  This isn't just a time of mourning.  I have mourned the loss of the dreams that I had and the new difficulties that we are and will have to experience.  We are thankful also for the blessing of a new child in our family!!!   We appreciate prayers and understanding that this is a time that isnt' easy.  I don't however just want "pity" as that hurts too - no matter how well intentioned. 

I have had sooooo many people reach out to me - family, friends and even strangers who are becoming friends.  I have felt God's hand and loving touch in so many of the words of encouragment that have been shared.  It's been something that helped tremendously as I  have been struggling with my own prayers and wondering if I'm being heard.  I know that I am being heard  - but the feelings aren't always there.  Being such an emotional time, feelings can seem overwhelming at times.

I have appreciated the words of others that tell us that we will find such joy in having Eliana in our family.  I appreciate the prayers for my family as we work to find a "new normal" for our lives.  I appreciate the prayers for my dear husband and I as we work to develop new ways to communicate and help support each other.

I have not appreciated comments telling me that I need to add anything more to my already full plate!  That just isn't what genuine love and compassion look like to me!  Thankfully this has just happened once thus far.  I hope that it gives me a greater sensitivity to the comments that I make to someone that is overwhelmed, hurting and doing the best that they can in a difficult situation.  Extending grace is such a beautiful way to show love.

I am so very thankful for the support my entire family has received.  It has truly been more than I could have imagined.  Thank you precious friends for being the hands of God to my family!

With love,

Thursday, January 18, 2007

A more positive note today

Today was a better day - emotionally anyway.  I'll take whatever I can get these days. 

My children have been wonderful during all of the chaos that has gone on during the last month.  Our lives have been so disrupted and yet they are all handling it really well.  Our ped asked which of our children was having the hardest time with the baby - and honestly we said none of them.  What a blessing. 

I wanted to share a few of the happy moments my children have brought me.  Tonight as I was getting ready to pump, my oldest son come in and says "You are doing a good job Mom".  What sweet encouragment.  My daughter in seeing my struggles pumping has offered to pump herself so that our sweet baby could have more milk. 

One day when I was needing a little help with Eliana, I called asking for someone to come help me.  Our 2yo came running into my room with his arms outstretched saying "I help Eliana". 

All of the children love to hold her, kiss on her and be with her.  I love seeing them enjoy her and the things that she does.  It helps to see her through their eyes.  They do love their new sister.

We visited the ped today and got good news on several things

   *She has gained weight!!!  5 ounces in the last week and is up to 8lb 3 ounces now

   *The results from the renal u/s are normal!
   *The results from the infant screen are normal!  (Tests for thyroid function and other problems too.)

   *Her heart is still functioning well and she is in no distress right now. 

A sweet friend stayed with my children today while we were at the ped office.  She wrote me a note later saying that she enjoyed being with my children and that they are a blessing to her.  What sweet words for a mama's heart.

I'm thankful today for so many things.  Thank you God for a day filled with blessings! 

Wednesday, January 17, 2007

Praying for more milk!

Struggling ... still.  I keep wondering when people are just going to be tired of me crying ... and struggling.  I keep wondering when I'm going to be able to "deal" with all of this.  I'm not there - though I do have moments.  Today has not been filled with them though.

I'm still struggling with pumping.  I'm doing EVERYTHING that I can.  I just don't know what else to do.  Could ya'll pray that my milk supply would miraculously increase?  That seems a silly thing to ask, but it would mean so much to me.  My supply today has been horrible!  Sometimes pumping a double session - to still end up with very little milk.  I really want to be able to do this - but honestly feel that it is out of my hands at this point.  What else can I do???  Why can't I be like those gals that have plenty for their own baby and then some?  I pumped for over 7 hours today and have had one of my worst days yet.  

One the positive side, Eliana did nurse a couple of times yesterday.    Very brief, but still.    I really think she is capable.  I think if I had more milk it would help a lot.  Her heart is also making it tough and I'm not sure I can hang on until her surgery. 

I was reading a devotional story today about a woman in the same experience feeling like a pruned and dead-looking bush that she saw.  As she looked at that plant, she thought it looked like her - no life, no beauty, just an unsightly mess.  I just teared up knowing that I felt the same way - that's me! 

She goes on to tell a story about her Daddy and draws the lesson that what Her Father has in mind for her family's future and what she had in mind were world's apart.  He has wonderful surprises ahead ... if I will only trust Him.  I know that I'm being pruned - and hopefully that will mean beautiful roses in time.

I'm still struggling with so many emotions - depression, postpartum hormones, worry about Eliana's heart and my inability to meet the needs of my family as I have in the past.  Please pray that God will turn my mourning into joy.  I know that this can be done.  I know that He loves me.  I know that He loves my family.  But there is still so much that I don't understand - and there are so many fears for now and the future.  I know that God is good ... all the time.

You have turned my mourning into joyful dancing.  You have taken away my clothes of mourning and clothed me with joy.  Psalm 30:11

Sunday, January 14, 2007

A week filled with doctor appts

I have thought so many times of things I'd like to add to this blog - but finding the time to actually type is been tough!  My days are filled with pumping and then feeding - and on and on goes the cycle.  It's been hard!  In fact just tonight my 11yo daughter was about in tears talking about how "different" things are - and the pumping seems to be what has hit her the hardest.  I spend about 4 hours per day pumping and that much or more in feeding Eliana.  It's a LOT of time - and it's hard work.  I've received a lot of encouragment to keep it up - but also encouragment that if it gets to be too much for me or my family that it's alright to stop.  It is just hard to know what is best.

Last Wed, we had a physical therapist here to do an evaluation of Eliana.  She was pleased with what she saw and at the moment Eliana is not "behind" in any way.  She is trying to lift her head when on her tummy and when being held upright.  She gave me some ideas of a few things to do with Eliana, but didn't feel that we needed to start therapy immediately.  She was positive and encouraging which was nice.

On Thur we visited with our pediatrician for 2 hours.  She is very thorough and concerned not only for Eliana but also for the rest of our family.  I feel blessed to have someone that cares for us in this way.  Eliana had gained 4 ounces in the last week.  We were glad to see that as she had lost weight from week 2 to 3.  She weighed 7# 14 oz.  That is just 2 ounces above her birth weight.  We've been told that we need to fortify her food - both breastmilk and formula - with additional formula to boost the calorie count.  So far, her heart is doing fine.

On Fri, we visited Duke for a renal ultrasound.  During my prenatal u/s a problem showed up on the size of her kidneys and this was just a follow-up.  Unfortunately, the lab tech was not allowed to give us any  information and I could tell nothing from looking at the screen.  We'll have to wait and get the information from our ped.  Eliana slept through the u/s so it was a quick and easy procedure.

After finishing here, I met with the lactation consultant who was working at Duke that day.  This is a wonderful gal that has helped me from day 3 with Eliana.  She is a great encourager in so many ways!  I'm thankful to have had her help.  She helped me try a supplemental nursing system with Eliana.  It's really the last different thing we can try.  She did nurse some - both with and without it that day!  It's this that keeps me going on the pumping.  I really think that she CAN nurse - once we work past being sleepy and getting proper amounts of  milk.    Oh, they also tested my milk to see what the calorie content was for it.  Normal is 20 calories/ounce and that is what formula is too.  Mine tested at 21+!!!  I was very encouraged by that.  So while I don't have a lot of milk - at least what I do have is good. 

Please keep praying for us - for our whole family.  This is a big adjustment for all of us.  Will type more later, but for now I need to go pump.

With love,

Thursday, January 4, 2007

Cardiologist has good news!

Eliana had an appt with the cardiologist today.  She had another echocardiogram done today.  The first was done shortly after birth and transmitted to the cardiologist.  He wanted a better look at her heart.  He had good news for us after the echo - one of the problems that was thought to be present in her heart is not!!!     She does not have the AV canal defect (no separation between the canal on the right and left side of her heart).  Instead she does have these separated.  This will mean a less complicated surgery and hopefully less chance of problems in this area down the road. 

She does still have two holes in her heart that will require surgery.  One in the upper chambers and a larger one in the lower chambers.  Both holes are between the two chambers.  I have a really great picture from the cardiologist that helps to explain this - but I know that isn't all that helpful to those that are reading here.  Maybe I can find a link.

The bad news we received today is that she has not gained weight in the last week.  They are asking us to add formula to the breastmilk she receives in order to boost the calorie content for her.  She has to work extra hard due to the holes in her heart which burns more calories.  She is also still really sleepy and at times has a hard time staying awake for feedings. 

At this point in regards to her heart we are just waiting to see how she does.  If things go badly in regards to weight gain, she may have the surgery sooner - as early as 2 months.  The cardiologist expected that the surgery will probably take place between 3 and 6 months.  We are just in a waiting mode right now.

Things are expected to get hard for her sometime in the next month (between 4 and 7 weeks perhaps).  She will gradually begin to go into heart failure.  I told him that this sounded awful!  He assured me that it sounded worse than it was and that it would be gradual.  Also that it needed to happen before she could have the surgery.  We hope to know at least a week, possibly two, in advance of when the surgery will take place.

Please keep praying for all of us.  We are so encouraged by the notes and prayers of so many on our behalf!!!  I know it has helped to carry us these last couple of weeks.  Here are some specific requests.

Pray for health for our family.  For the last two weeks every member of our family - except Eliana and I - have been sick.  My dh has been out since last Friday!  It's been really hard. 

Please pray for me as I try to pump milk for Eliana as I know that this is really good for her.   Also for her feeding that she would get the calories she needs to be able to grow.

Pray also for our family
as this adjustment has been a hard one for all of - especially with all of the sickness.

We are thankful for you dear friends!


Monday, January 1, 2007

One more picture

Please continue to pray for our family.  The adjustment to having Eliana join our family has been a hard one.  We were unprepared for her medical needs and this has been hard.  Additionally, since we've been home from the hospital we've had sick children - and dh!  Only Mommy and Eliana have remained healthy.  We have not figured out nursing and pumping around the clock is very hard!

I know that there will be joy to come.  I know that God is good.  I know that He is carrying us through all of this.  I am so very thankful for the friends and family that have reached out in support of ours. 

Pictures of Eliana Joy

We've had a number of people ask and thus we wanted to share a few photos of our newest little cutie.   She sleeps a lot and has had very few awake/alert times. 

She has a head full of dark hair - not sure where that came from as all of my other babies were "bald".  It's  taken some getting used to  - seeing hair on my baby's head!    She is adorable!