Arrrgggh! I just typed in my entry, finished it and hit a wrong button on the computer and the whole entry is gone! *sigh* I'll try again.
I was able to put the NG tube into Eliana today. Thank you for the prayers for this procedure. It went very smoothly. I was understandably frightened about inserting a tube into her nose and running down to her stomach. We had a wonderfullly encouraging nurse helping Roger and I. We got everything ready - the syringe, tubing, tape, etc. They helped to hold onto Eliana and then it was my turn. I just couldn't do it. I waited, prayed and waited some more to get up the courage to start. They patiently waited and encouraged me and I finally just did it. It went very smoothly. Thank you God!
I was afraid of hitting the back of the nose and causing her to gag - and then having difficulty moving beyond this point. Thankfully it just went in so nicely. I have one more time to try this before going home and Roger needs to do it once.
I'm not sure how often we will need to do this. We've gotten conflicting information on how often it needs to be changed. Obviously if Eliana pulls it out, we'll need to reinsert it.
We are still planning to go home tomorrow. I'm looking forward to being home again with my whole family. We will be looking at surgery sometime in tne next 6 weeks is the prediction.
Thank you again for prayer!
Leslie
Wednesday, February 7, 2007
Day 2 at the hospital
I thought I might have a little more time here - to sleep and post on the computer. 
What was I thinking?!!! I went to bed about 3am last night. I really wanted to post here and update folks. I am so thankful for the many prayers that are being lifted for our family.
Eliana is doing well today. She has had 2 blood draws (both in her heel). The first didn't seem to bother her, but the second one upset her greatly! It didn't help that her blood was flowing slowly and it took a while to get it complete.
I met with 2 speech therapists today to help with her feeding. They were helpful in showing me some things I could do with Eliana to help her eat more effectively. It's become a very difficult thing for her to do as it just wears her out! We are trying to offer her food via bottle first for about 15 minutes or until she is all tuckered out. Then she gets the rest of the feed in the tube. She is taking about 20-30 ml via bottle. She is doing such a good job!
I've met with LOTS of people today! Lots of doctors, nurses, nutritionist, etc. All have been very nice and are doing all that they can to educate and help us walk this difficult medical path as best they can.
Prayers and Praises
We are hoping to go home tomorrow! Need to run as someone is here to deliver medical equipment.
More later if possible.
Love, Leslie
What was I thinking?!!! I went to bed about 3am last night. I really wanted to post here and update folks. I am so thankful for the many prayers that are being lifted for our family. Eliana is doing well today. She has had 2 blood draws (both in her heel). The first didn't seem to bother her, but the second one upset her greatly! It didn't help that her blood was flowing slowly and it took a while to get it complete.
I met with 2 speech therapists today to help with her feeding. They were helpful in showing me some things I could do with Eliana to help her eat more effectively. It's become a very difficult thing for her to do as it just wears her out! We are trying to offer her food via bottle first for about 15 minutes or until she is all tuckered out. Then she gets the rest of the feed in the tube. She is taking about 20-30 ml via bottle. She is doing such a good job!
I've met with LOTS of people today! Lots of doctors, nurses, nutritionist, etc. All have been very nice and are doing all that they can to educate and help us walk this difficult medical path as best they can.
Prayers and Praises
- Praise for our cardiologist. He is straightfoward and caring. One of the other drs scheduled a follow-up appt for Eliana next week. He told us that our cardio would not be seeing people in clinic next week and so we'd be seeing someone else. I wasn't really excited about this - seeing someone new that I don't know and that doesn't know Eliana. Later when our cardio visited us, I mentioned not being able to see him and he told me that it was not a problem. He would work it out so that we saw him. I'm so thankful that he is willing to work around whatever scheduling he has to see us!
- Prayer - I will need to insert the feeding tube successfully 3 times before they let us go home. I really don't want to do this!!! I obviously will as I would do anything for my precious daughter. Please pray that I'm a quick learner and that it doesn't hurt Eliana at all to have me "practice" on her.
- Prayer for weight gain. We want her to gain weight so that she is in better health nutritionally. This will help her to do better in the surgery and the recovery.
- Prayer for her heart. We don't know the effect of increased feeding/fluids on her heart. It may cause more distress. If so, the surgery would obviously come sooner.
- Praise - our cardio is working to plan a surgery date for us. He knows that we will need to make care plans for our other children and is willing to try to set a date in March for the surgery - with the understanding that things may change. I appreciate that he is sensitive to our family's needs.
- Praise for the wonderful family and friends that we have!!! I am so thankful that Roger and I can focus our attention on Eliana and know that our other children are in good hands.
- Prayer for the health of our family. There is so much yuck out there. Please pray that we can not get it! We are trying to be very careful about our exposure and have greatly limited our time outside of the home.
We are hoping to go home tomorrow! Need to run as someone is here to deliver medical equipment.
More later if possible.
Love, Leslie
Tuesday, February 6, 2007
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
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
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
Monday, February 5, 2007
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
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
Sunday, February 4, 2007
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.
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
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
Saturday, February 3, 2007
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
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
Thursday, February 1, 2007
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
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
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.
Blessings,.
Leslie
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
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
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