Hi Friends,
I have so many thoughts and emotions awash in my mind. I tried to start writing it out, but haven't yet finished. So much going on in my mind and heart. So many people I want to hug and thank. So little time in my days.
I have been copying the prayer requests I've posted for Eliana over the last month and a half on the FIAR board (homeschool community I'm a part of). I have once again been awash with the love that has been poured out on our family. Once again I sit here crying. So very thankful for a God that loves me (all of us!), so thankful to be a part of this body, so thankful for the answers to prayers and even thankful that I'm learning patience for the prayer requests that haven't been answered in the ways that I have hoped.
I'm thankful that I'm learning in a new way that God is good. It's easy to feel that way when life is good - things are going your way - and you can see purpose in what is happening. It's been quite another to know that He is unchanging when you feel scared, overwhelmed, alone and honestly, angry for the answers that aren't what you wanted, asked or prayed for.
I have so much I want to share and will try to post more tomorrow, but did want to update on today. Thank you to all that shared your stories and experiences with me. It does help to hear them.
We met with the ENT today. He confirmed that her eardrum isn't moving in the left ear. Tried again to do the "pressure" hearing test and did not get good results. She was asleep when they started which I thought might help - but woke up quickly and cried through the entire thing! He feels that it is "most likely" fluid, though he isn't certain. What he wants to do is wait another 3 months to see if it has resolved on it's own. If not, she will most likely be a candidate for surgery to have tubes placed in her ears. She would have a hearing test done then while she is sedated.
So, the things I wanted prayer for weren't really answered - or not in the clear manner that i desired. I wanted to know what was going on, I wanted a clear diagnosis and I wanted there to be nothing wrong with Eliana's hearing. Now, the last thing I listed was for patience for me as we wait for answers. I do feel a peace about this. Do I wish we "knew" what was going on? Yes! Do I wish that she had gotten a good read on her test? Yes! (Esp when he removed some wax from her ear - I had hoped that might be the problem.) Do I trust that things will work out? Again, yes.
The ENT also encouraged me that it was great that one ear is testing just fine and that this is what she needs for development at this age. In another couple of months, she will need to have correction if there are still problems. Oh, and when he looked in her ear he mentioned that her passage wasn't so small. Then said, "That's a good thing!" :)Yes, thank you God for this gift to our sweet girl!
We are scheduled to see him again at the end of July. I'll definitely update as we get close to that date.
I also stopped by my OB office today as it was close to the ENT (and on the other side of town from where I live). I know a lot of the people there since I'm in so very often with my pregnancies (typically at least once per week - sometimes more - for the entire pregnancy). I love the people there! They have taken great care of me and I always miss going in after I've had my babies. Anyway, it was such fun to stop in and see some of the sweet people there! One of the gals told me that she had been praying for us all of these months. :hcry: What sweet encouragment. Oh God, thank you for knitting so many precious people together to pray for our Eliana!
It's very late and I should close. Will try to write more tomorrow. Wanted to update you sweet friends
With love,
Leslie
Wednesday, May 2, 2007
Monday, April 30, 2007
Trying to add another photo
This was the first day after Eliana's surgery when the children came to visit her. She gave Christopher a smile - her first after surgery. I was thrilled to see her smile!!! I was concern ed that she might lose her ability to smile as I had heard this was possible after heart surgery. What a thankful praise to God to see that it didn't happen to Eliana!
With love,
Leslie
PS I added two entries today, so see the longer one below.
With love,
Leslie
PS I added two entries today, so see the longer one below.
What fun we are having with Aunt Karen!
It has been so wonderful to have Roger's sister, Karen, here to visit and help us out! She is such a sweetheart! The children are just loving having her here to play with, talk to and just have fun hanging out! We are all going to be sad to see her leave - though I'm sure her family is going to be glad to have her home!
Karen took the children strawberry picking today - and they came home with 8 flats of berries! They had a great time and we are trying to figure out what to do with so many berries - in addition to sharing some with friends. They had a grand time making smoothies and popsicles with them earlier.
Karen has played games, read books, learned to bead bracelets and so much more! She has helped out tons around the house, held Eliana and even took over a feeding today so I could go and get my hair cut. She really is a sweet sister-in-law. I'm so thankful for her. I just wished that they lived closer to us!
Eliana is doing pretty well. She is crying more now - which is so unusual for her! She almost NEVER cried before her surgery. Nothing bothered her - she rarely ever even protested for food. I know that wasn't normal, but it is what we were used to with her. So now I'm trying to figure out her cries. It's been a little hard as there is still much I don't know. Tonight getting close to 9pm she started to fuss - then cry as I got her bottle ready. She wanted to eat - but just couldn't seem to get going. She seemed a little "stuffy", but I couldn't suction anything from her nose. I ended up holding her and bouncing her and trying to settle her for about 30 minutes. She took her whole feeding by tube. I'm thankful we still have that option, though I do want to get rid of it too! It's been in much longer than I had anticipated it would be.
Most recent prayer requests from here involve her hearing and getting started with therapists. Eliana has an appointment on Wed at 1pm with an ENT (Ear, Nose & Throat specialist).
We are also trying to figure out therapy for Eliana and it too is overwhelming. Trying to "choose" someone and to figure out what she needs is hard when there is just so much I don't know. I would love prayers for wisdom in choosing the right therapist! This is a long-term relationship (though I know I can change it if isn't working - I really don't want to do that.) This is someone that will be in my home regularly and I really want to feel comfortable with her! Honestly the idea of people in my home - that I don't know - is a little intimidating. I don't want to feel that we have to have it all together - clean house, well behaved children, etc. in order not to be judged. I've probably just reading to many stories of CPS investigations - which I know this isn't. I know my fears may sound irrational - and hopefully I'll feel that way too after meeting with them!!
I have greatly appreciate the many friends that have shared stories with me about their own children facing similar situations with hearing - and how all turned out fine! I am hoping and praying that they same will be true for Eliana. I have seen God work out so many details - even the smallest ones - and know that no matter what the outcome that He will work in this too. I know that He loves my little girl more than we do.
Eliana is sleeping and taking her last feeding of the day. It's just after midnight here and I'll be going to sleep soon too. I hope you are having a great day wherever you are! I am thankful for all of you - for your prayers, your encouragment and your love. We are blessed beyond measure!
With love,
Leslie
PS I know it's late to ask this, but if any of you want to be put on my "mailing list" then you will receive a notice when I've posted to the blog. Just let me know - send me an email - and I'll add you to the list.
Karen took the children strawberry picking today - and they came home with 8 flats of berries! They had a great time and we are trying to figure out what to do with so many berries - in addition to sharing some with friends. They had a grand time making smoothies and popsicles with them earlier.
Karen has played games, read books, learned to bead bracelets and so much more! She has helped out tons around the house, held Eliana and even took over a feeding today so I could go and get my hair cut. She really is a sweet sister-in-law. I'm so thankful for her. I just wished that they lived closer to us!
Eliana is doing pretty well. She is crying more now - which is so unusual for her! She almost NEVER cried before her surgery. Nothing bothered her - she rarely ever even protested for food. I know that wasn't normal, but it is what we were used to with her. So now I'm trying to figure out her cries. It's been a little hard as there is still much I don't know. Tonight getting close to 9pm she started to fuss - then cry as I got her bottle ready. She wanted to eat - but just couldn't seem to get going. She seemed a little "stuffy", but I couldn't suction anything from her nose. I ended up holding her and bouncing her and trying to settle her for about 30 minutes. She took her whole feeding by tube. I'm thankful we still have that option, though I do want to get rid of it too! It's been in much longer than I had anticipated it would be.
Most recent prayer requests from here involve her hearing and getting started with therapists. Eliana has an appointment on Wed at 1pm with an ENT (Ear, Nose & Throat specialist).
- Any problems with her ears would be seen/detected by the ENT with an accurate diagnosis
- No hearing loss for my little girl
- Wisdom in knowing how to treat her.
- Peace for me as I wait - this has been a long season of waiting!
We are also trying to figure out therapy for Eliana and it too is overwhelming. Trying to "choose" someone and to figure out what she needs is hard when there is just so much I don't know. I would love prayers for wisdom in choosing the right therapist! This is a long-term relationship (though I know I can change it if isn't working - I really don't want to do that.) This is someone that will be in my home regularly and I really want to feel comfortable with her! Honestly the idea of people in my home - that I don't know - is a little intimidating. I don't want to feel that we have to have it all together - clean house, well behaved children, etc. in order not to be judged. I've probably just reading to many stories of CPS investigations - which I know this isn't. I know my fears may sound irrational - and hopefully I'll feel that way too after meeting with them!!
I have greatly appreciate the many friends that have shared stories with me about their own children facing similar situations with hearing - and how all turned out fine! I am hoping and praying that they same will be true for Eliana. I have seen God work out so many details - even the smallest ones - and know that no matter what the outcome that He will work in this too. I know that He loves my little girl more than we do.
Eliana is sleeping and taking her last feeding of the day. It's just after midnight here and I'll be going to sleep soon too. I hope you are having a great day wherever you are! I am thankful for all of you - for your prayers, your encouragment and your love. We are blessed beyond measure!
With love,
Leslie
PS I know it's late to ask this, but if any of you want to be put on my "mailing list" then you will receive a notice when I've posted to the blog. Just let me know - send me an email - and I'll add you to the list.
Saturday, April 28, 2007
Visit with Eliana's surgeon yesterday
Just to update on Eliana's most recent medical appointment. She was scheduled to meet with her surgeon one last time yesterday (Fri 4/27). When we arrived we also found out that she was scheduled for blood work, a chest x-ray and an EKG. Wish we had known that in advance so I could have given her some tylenol. She didn't like the heel prick and cried and cried as they tried to get enough blood drawn. The other two tests were easy and she didn't mind them at all. Everything was fine with both the chest x-ray and EKG.
We had a good meeting with Dr. Jaggers. He thinks she looks well and is healing well. Her incision site looks good and her bones (sternum) are also healing well. He said that often it is hard for bones to heal well because babies can be very wiggly and pull the bones apart, though thankfully that hasn't happened with Eliana. She is approved to be on her tummy and to have a bath. We still need to be careful on how we hold her so as not to put stress on her chest (something that might pull on it like picking her up under her arms).
We asked some questions about her surgery and learned that her ASD (Atrial Septal Defect) was larger than they thought prior to the surgery. Instead of suturing it, he also used a patch on that hole. The patch is made from a "gortex" material that is resistant to bacteria. Her skin tissues will grow around it. As he was explaining what he had to do to repair this hole, he was looking for paper. I handed him my notebook and he drew a picture of her heart and where the holes were located. Explaining how the ASD was under the septal leaflet of the valve. (Sorry if this is too much technical info, though some will like it.) He had to cut away the tendons (may not be the right word) that helped this valve to open and close to be able to get to this hole and repair it.
Dr. Jaggers seemed to like explaining all of this and I think it's neat to have the hand-drawn picture from one that has seen her heart. Eliana's baby scrapbook is going to be filled with a lot of unusual things - whenever I have time to get back to that hobby.
I'm going to go nap while the house is quiet and Eliana is sleeping. She is feeling better, though still having some fussy times. Yesterday about 5:30pm she started crying and wouldn't be settled. I tried feeding her and she seemed hungry. After swallowing though, she cried more. Not sure if she is still having pain in her throat? I tried a little longer to feed her, then stopped and focused on getting her settled. She fell asleep and didn't wake until 7am this morning! The day before yesterday we had a similar time only she fell asleep about 4 or 4:30 in the afternoon and slept until the next morning.
More later.
Love, Leslie
We had a good meeting with Dr. Jaggers. He thinks she looks well and is healing well. Her incision site looks good and her bones (sternum) are also healing well. He said that often it is hard for bones to heal well because babies can be very wiggly and pull the bones apart, though thankfully that hasn't happened with Eliana. She is approved to be on her tummy and to have a bath. We still need to be careful on how we hold her so as not to put stress on her chest (something that might pull on it like picking her up under her arms).
We asked some questions about her surgery and learned that her ASD (Atrial Septal Defect) was larger than they thought prior to the surgery. Instead of suturing it, he also used a patch on that hole. The patch is made from a "gortex" material that is resistant to bacteria. Her skin tissues will grow around it. As he was explaining what he had to do to repair this hole, he was looking for paper. I handed him my notebook and he drew a picture of her heart and where the holes were located. Explaining how the ASD was under the septal leaflet of the valve. (Sorry if this is too much technical info, though some will like it.) He had to cut away the tendons (may not be the right word) that helped this valve to open and close to be able to get to this hole and repair it.
Dr. Jaggers seemed to like explaining all of this and I think it's neat to have the hand-drawn picture from one that has seen her heart. Eliana's baby scrapbook is going to be filled with a lot of unusual things - whenever I have time to get back to that hobby.
I'm going to go nap while the house is quiet and Eliana is sleeping. She is feeling better, though still having some fussy times. Yesterday about 5:30pm she started crying and wouldn't be settled. I tried feeding her and she seemed hungry. After swallowing though, she cried more. Not sure if she is still having pain in her throat? I tried a little longer to feed her, then stopped and focused on getting her settled. She fell asleep and didn't wake until 7am this morning! The day before yesterday we had a similar time only she fell asleep about 4 or 4:30 in the afternoon and slept until the next morning.
More later.
Love, Leslie
Thursday, April 26, 2007
Photos and More
It's been a busy last 24 hours. Last night, Roger's sister arrived to stay for a week and help us. We are all thrilled to have Aunt Karen here!!! She had a tough time getting here with cancellations and rerouted planes and we were glad to have her finally here! She is a nurse with lots of experience. She is a delight and we are thankful she is willing to be here for us.
Eliana had a great visit with her pediatrician on Tuesday. Her weight is up again. In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week! How amazing is that?! Sweet baby girl really was using a lot of energy with her heart. We aren't going back to the ped for a month! A month! Seems like a really long time when we've been there weekly or every other week for the last 4 months. I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined! I'm so thankful for the excellent care she has received there!
Today we visited a feeding specialist. She watched Eliana and tried to give me tips. We tried changing some of the bottle pieces to help her out, but just need to keep working on it. She is doing better, but still has a ways to go before we are getting rid of that feeding tube. The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.
I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it. Oh yes, we are doing that too. When Eliana was an infant, she passed the hearing screen in her right ear but not the left. I even went back when she was a week old and had the test redone - same results. We haven't followed up again until now - well, because we were really focused on her heart.
They wanted her asleep for the test. She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her. She wasn't fussy though - very still and quiet for an awake baby. Even so, they couldn't get a reading with the first test or the second. The third test also did not give a passing mark in her left ear, but did in her right. As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!
The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication. He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up. He can't be sure that there is something wrong with the left ear, but she could have some hearing loss. I listened and remained calm even though I just wanted to cry! Rebecca was with me and I didn't want her upset. Just before we left he did one more test and told us that her left eardrum wasn't really moving. Later when I talked with Eliana's ped. she said that this most likely indicated fluid. I'm hoping and praying that is what is happening.
Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again? To hold my baby and not worry about her heart and surgery. This just surprised me today. I wasn't prepared to think my baby might have hearing problems too.
On my way home, I called and set up an ENT appt for next Wed for Eliana. Please pray that if there are problems, that the ENT will be able to detect them. Of course, I'm also praying that there are no problems! Praying that it is just fluid and that she has not suffered hearing loss. Thank you for praying once again for our baby!
Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this. I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles. (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.) I felt God comforting me by saying that her soul is what He was talking about - not her earthly body. Her soul is made in His very image! Later I was reminded of a verse in which it tells us that God does not see the same way people see. People look at the outside of a person, but the Lord looks at the heart. Thank you God for encouraging my heart once again. The heart. That has been a huge lesson for me this year.
OK, I've been promising photos and here they are in slideshow format. I've been wanting to clean them up - or post them directly to the site, but haven't been able to. I Will try to post some here if the link to the slideshow doesn't work.
***WARNING*** I don't think that these are as "bad" as the last slideshow. However, you can see her incision on some of the photos. If you have children watching, you might want to preview them.
Here's the first set. Most are the day after surgery. The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that! One with a man in blue scrubs is one of her anesthesiologists. I tried to label the pictures, but not sure how that will work. I'm not sure if the link will work or if you'll have to cut and paste. Let me know if it doesn't work.
http://s176.photobucket.com/albums/w187/rogernelsen/4-17-07/?action=view¤t=1177429633.pbw
Second set - This is two days post-op. Fewer cords, no IV, etc. The man holding her when she is fussing is Dr. Jaggers, her surgeon. Sorry for the weird effects of my striped shirt.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-18-07/?action=view¤t=1176954299.pbw
Final Day. The first picture is Eliana's cardiologist, Dr. Carboni. Pictures at the end are of Duke Hospital.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-19-07/?action=view¤t=1177227073.pbw
Tomorrow is Eliana's follow-up appointment with her surgeon. Please pray for wisdom in knowing questions that we should ask. I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.
I'm worn out and am hoping to go to sleep soon. Eliana was up late last night, most of the day and has been asleep since late afternoon. I'm hoping she'll still be able to sleep through the night.
Thank you for your prayers for us.
With love
Leslie
Eliana had a great visit with her pediatrician on Tuesday. Her weight is up again. In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week! How amazing is that?! Sweet baby girl really was using a lot of energy with her heart. We aren't going back to the ped for a month! A month! Seems like a really long time when we've been there weekly or every other week for the last 4 months. I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined! I'm so thankful for the excellent care she has received there!
Today we visited a feeding specialist. She watched Eliana and tried to give me tips. We tried changing some of the bottle pieces to help her out, but just need to keep working on it. She is doing better, but still has a ways to go before we are getting rid of that feeding tube. The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.
I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it. Oh yes, we are doing that too. When Eliana was an infant, she passed the hearing screen in her right ear but not the left. I even went back when she was a week old and had the test redone - same results. We haven't followed up again until now - well, because we were really focused on her heart.
They wanted her asleep for the test. She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her. She wasn't fussy though - very still and quiet for an awake baby. Even so, they couldn't get a reading with the first test or the second. The third test also did not give a passing mark in her left ear, but did in her right. As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!
The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication. He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up. He can't be sure that there is something wrong with the left ear, but she could have some hearing loss. I listened and remained calm even though I just wanted to cry! Rebecca was with me and I didn't want her upset. Just before we left he did one more test and told us that her left eardrum wasn't really moving. Later when I talked with Eliana's ped. she said that this most likely indicated fluid. I'm hoping and praying that is what is happening.
Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again? To hold my baby and not worry about her heart and surgery. This just surprised me today. I wasn't prepared to think my baby might have hearing problems too.
On my way home, I called and set up an ENT appt for next Wed for Eliana. Please pray that if there are problems, that the ENT will be able to detect them. Of course, I'm also praying that there are no problems! Praying that it is just fluid and that she has not suffered hearing loss. Thank you for praying once again for our baby!
Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this. I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles. (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.) I felt God comforting me by saying that her soul is what He was talking about - not her earthly body. Her soul is made in His very image! Later I was reminded of a verse in which it tells us that God does not see the same way people see. People look at the outside of a person, but the Lord looks at the heart. Thank you God for encouraging my heart once again. The heart. That has been a huge lesson for me this year.
OK, I've been promising photos and here they are in slideshow format. I've been wanting to clean them up - or post them directly to the site, but haven't been able to. I Will try to post some here if the link to the slideshow doesn't work.
***WARNING*** I don't think that these are as "bad" as the last slideshow. However, you can see her incision on some of the photos. If you have children watching, you might want to preview them.
Here's the first set. Most are the day after surgery. The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that! One with a man in blue scrubs is one of her anesthesiologists. I tried to label the pictures, but not sure how that will work. I'm not sure if the link will work or if you'll have to cut and paste. Let me know if it doesn't work.
http://s176.photobucket.com/albums/w187/rogernelsen/4-17-07/?action=view¤t=1177429633.pbw
Second set - This is two days post-op. Fewer cords, no IV, etc. The man holding her when she is fussing is Dr. Jaggers, her surgeon. Sorry for the weird effects of my striped shirt.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-18-07/?action=view¤t=1176954299.pbw
Final Day. The first picture is Eliana's cardiologist, Dr. Carboni. Pictures at the end are of Duke Hospital.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-19-07/?action=view¤t=1177227073.pbw
Tomorrow is Eliana's follow-up appointment with her surgeon. Please pray for wisdom in knowing questions that we should ask. I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.
I'm worn out and am hoping to go to sleep soon. Eliana was up late last night, most of the day and has been asleep since late afternoon. I'm hoping she'll still be able to sleep through the night.
Thank you for your prayers for us.
With love
Leslie
Wednesday, April 25, 2007
Wholehearted Bracelets Update
Thanks for being patient with me in waiting for an update. Things have been busy around here!
Rebecca attended a Special Needs Conference near our home on Saturday. She was invited by a friend (thank you Tami)to share her vendor booth space and was looking forward to the opportunity. We had anticipated Eliana still being in the hospital at that time and thus arranged for a friend to take her to the conference. When I ended up being home with Eliana, Rebecca wanted my company/support there, but was happy to have friends go with her instead (thank you Catherine and Hannah). Did I mention that Rebecca can be a little on the shy side?
While at the conference,$285 make that $295 (I just counted the $) worth of bracelets were sold! Rebecca also spoke with a father there who has a child with heart problems. He was interested in her charity and wanted to know if she might be interested in expanding. I'm not sure that we could expand in our current format, though the idea does have appeal.
For now, our family - and most especially Rebecca - has spent many, many hours on this ministry. We have been thankful for the times when friends have helped. The day to day filling of orders, making bracelets and selling them has fallen to a tender-hearted 11yo girl though. Quite an undertaking!!! She has sold over $2500 in the last month and a half! We would never have been able to do this without the support and interest of friends - and the wonderful "word-of-mouth" advertising she has received.
Rebecca received a sweet note last week from the daughter of one of my on-line friends. The mom and daughter were both touched by what Rebecca is doing and the 7yo daughter has decided to make and sell bracelets for Rebecca and donate the money to her cause! She also donated $10 of her own money. (Thank you Michelle and Amy!) Oh, the tender hearts of children are so sweet! What an example to me of compassion and love!
Rebecca still has a good inventory left and is planning to visit several places in the next week as well as finish off some special orders. Tomorrow we will be going to Duke for an appointment for Eliana with a feeding specialist. Afterwards we will be meeting with a nurse that works on the adult cardiac floor. She was given one of Rebecca's bracelets by her husband (who works with Roger) and has been taking orders for Rebecca! Isn't that neat?!
It's been hard to know how exactly to market this - and manage it as a business. This is not something we have done before and honestly I never expected it to grow this big! I do think it's a great idea, a wonderful way to help other children and a fabulous learning opportunity for all of us. We have seen God's blessing on her venture and have been thankful for the distraction that it offered our family during an incredibly stressful time!
Today Rebecca and I are planning to visit a local craft store (chain) to see if they might be interested in donating anything to her ministry. When we began this project, we decided to fund her supplies so that ALL of the money in sales would go towards her cause. We have received support from friends and thought that some area businesses might be interested in helping too. We'll see. A big step for my girl who is learning to work through her shyness.
I need to go update the numbers for her sales. Her total is currently$2704.00! Correction here too - $2714! Her dreaming big goal of $5000 is looking more managable all the time! 
Will try to post more later about yesterday's pediatrician appointment - and the pictures too.
Love,
Leslie
Rebecca attended a Special Needs Conference near our home on Saturday. She was invited by a friend (thank you Tami)to share her vendor booth space and was looking forward to the opportunity. We had anticipated Eliana still being in the hospital at that time and thus arranged for a friend to take her to the conference. When I ended up being home with Eliana, Rebecca wanted my company/support there, but was happy to have friends go with her instead (thank you Catherine and Hannah). Did I mention that Rebecca can be a little on the shy side?
While at the conference,
For now, our family - and most especially Rebecca - has spent many, many hours on this ministry. We have been thankful for the times when friends have helped. The day to day filling of orders, making bracelets and selling them has fallen to a tender-hearted 11yo girl though. Quite an undertaking!!! She has sold over $2500 in the last month and a half! We would never have been able to do this without the support and interest of friends - and the wonderful "word-of-mouth" advertising she has received.
Rebecca received a sweet note last week from the daughter of one of my on-line friends. The mom and daughter were both touched by what Rebecca is doing and the 7yo daughter has decided to make and sell bracelets for Rebecca and donate the money to her cause! She also donated $10 of her own money. (Thank you Michelle and Amy!) Oh, the tender hearts of children are so sweet! What an example to me of compassion and love!
Rebecca still has a good inventory left and is planning to visit several places in the next week as well as finish off some special orders. Tomorrow we will be going to Duke for an appointment for Eliana with a feeding specialist. Afterwards we will be meeting with a nurse that works on the adult cardiac floor. She was given one of Rebecca's bracelets by her husband (who works with Roger) and has been taking orders for Rebecca! Isn't that neat?!
It's been hard to know how exactly to market this - and manage it as a business. This is not something we have done before and honestly I never expected it to grow this big! I do think it's a great idea, a wonderful way to help other children and a fabulous learning opportunity for all of us. We have seen God's blessing on her venture and have been thankful for the distraction that it offered our family during an incredibly stressful time!
Today Rebecca and I are planning to visit a local craft store (chain) to see if they might be interested in donating anything to her ministry. When we began this project, we decided to fund her supplies so that ALL of the money in sales would go towards her cause. We have received support from friends and thought that some area businesses might be interested in helping too. We'll see. A big step for my girl who is learning to work through her shyness.
I need to go update the numbers for her sales. Her total is currently
Will try to post more later about yesterday's pediatrician appointment - and the pictures too.
Love,
Leslie
Tuesday, April 24, 2007
Changes in the Last Week
Has it been a week already? So much seems like a blur. I was reading back over some of my entries on the day of her surgery and was surprised that some of the details I didn't recall - like how I held on to her little bow. I'm glad to have this wriiten record.
I have noticed some changes over the last week.
Some things haven't changed - like her smile! When I had heard that some babies lose skills, I really hoped that this wouldn't be true for her. I hated to think of missing her smile. It just lights up her whole face. I'm so thankful for her smile!
Some more numbers for you.
Countless - The prayers offered up and answered on behalf of my daughter and our family.
105 - Ml or cc's per feeding. That's 3.5 ounces. Enough to sustain her weight, though will probably have to go up soon. We will have to see how her body is handling excess fluid (one of her meds).
97 - Highest amount she has eaten via bottle since surgery - and that was the DAY AFTER surgery!!! She did 90 today and I was thrilled!
7 - Number of feedings per day. Every three hours - and blissfully still skipping the 3am one! Eliana eats at 3, 6, 9 and 12 around the clock.
3 - Number of medical appointments Eliana has this week. One with the pediatrician, one with a feeding specialist and one with her surgeon.
2 - Number of medications Eliana is currently taking. This does not include tylenol. She is on lasix and oxycodone.
2 - Number of holes that are repaired!!! Just the other night a friend's child commented on the holes in Eliana's heart. Rebecca said "She doesn't have holes in her heart any longer!" Oh, how sweet to hear those words!
1 - Precious little girl that is already impacting the world!
I had planned to post yesterday/last night on how much better things were with Eliana's pain. I had cut back on her pain meds and she was doing great ... until about 9:20pm. She cried hard for about 10 to 15 minutes before falling asleep. Then she woke about 10:50pm and cried for an hour. She was gassy and fussy. I did finally get her setttled (not sure if the mylicon helped or she was just worn out!). Sweet baby slept the rest of the night.
Still working on the photos. The slideshow is looking weird due to the striped shirt I was wearing one of the days. I'll try to get it fixed today. (Or I'll see if my dh or oldest son or sweet friend can fix it as I really don't know how.)
Thank you for praying and for caring about these details.
Love to you all,
Leslie
I have noticed some changes over the last week.
- Less sweating - my poor child was always warm. When I'd hold her in my lap, my legs would end up wet where her head had been.
- Her heart used to pound - really pound! I could lay my hand on her chest and feel her heart working so hard! This has been the most striking change to me.
- Crying - more of this. She hardly cried at all before. Sometimes recently she would fuss to be fed - but not usually. Now she has cried in pain more than I care to experience. It is so hard to see and hear her fuss as it just isn't something she has done in the past.
- Weight - She is looking chubbier - though maybe it's just my imagination. We visit the pediatrician today and I'm curious to see what she has gained.
- Eating - Twice she has taken 3 ounces since surgery. This hasn't happened since January! I'm hopeful that she will pick up quickly on this, but at the same time not wanting to push her on this.
- Sleep - She sleeps a LOT less than she used to! She wakes more easily to noise too. Thankfully she is still able to fall asleep pretty easily - and often on her own. Something none of my other children did at a young age.
Some things haven't changed - like her smile! When I had heard that some babies lose skills, I really hoped that this wouldn't be true for her. I hated to think of missing her smile. It just lights up her whole face. I'm so thankful for her smile!
Some more numbers for you.
Countless - The prayers offered up and answered on behalf of my daughter and our family.
105 - Ml or cc's per feeding. That's 3.5 ounces. Enough to sustain her weight, though will probably have to go up soon. We will have to see how her body is handling excess fluid (one of her meds).
97 - Highest amount she has eaten via bottle since surgery - and that was the DAY AFTER surgery!!! She did 90 today and I was thrilled!
7 - Number of feedings per day. Every three hours - and blissfully still skipping the 3am one! Eliana eats at 3, 6, 9 and 12 around the clock.
3 - Number of medical appointments Eliana has this week. One with the pediatrician, one with a feeding specialist and one with her surgeon.
2 - Number of medications Eliana is currently taking. This does not include tylenol. She is on lasix and oxycodone.
2 - Number of holes that are repaired!!! Just the other night a friend's child commented on the holes in Eliana's heart. Rebecca said "She doesn't have holes in her heart any longer!" Oh, how sweet to hear those words!
1 - Precious little girl that is already impacting the world!
I had planned to post yesterday/last night on how much better things were with Eliana's pain. I had cut back on her pain meds and she was doing great ... until about 9:20pm. She cried hard for about 10 to 15 minutes before falling asleep. Then she woke about 10:50pm and cried for an hour. She was gassy and fussy. I did finally get her setttled (not sure if the mylicon helped or she was just worn out!). Sweet baby slept the rest of the night.
Still working on the photos. The slideshow is looking weird due to the striped shirt I was wearing one of the days. I'll try to get it fixed today. (Or I'll see if my dh or oldest son or sweet friend can fix it as I really don't know how.)
Thank you for praying and for caring about these details.
Love to you all,
Leslie
Sunday, April 22, 2007
Less than a week ago ...
we were still facing the giant. Open heart surgery for our baby girl! I was waiting to be plummeted into anguish and despair. I had been forewarned and completely understood that overwhelming fear - but thankfully it didn't come. Oh, I was afraid, but I was also given the gift of God's peace. I have to believe that this was the answer to many, many people praying for our family. First though I had to walk through a hard place with Him. I'm not saying He wouldn't have given me peace without doing this. I don't know.
I had to come to a place where I could say to God that no matter what the outcome, that I knew that He is good. I had to be willing to place my little girl in His hands. He had her anyway - maybe it was just that I had to be willing to let go. It was completely out of my control! Completely.
I heard someone say that facing surgery made the story of Abraham and Isaac come alive for them. That has never been a story that I really liked or understood. The willing sacrifice of your own child? How could you do that? I didn't know if I could if put in Abraham's place. It's really about trust. It's about knowing who is in control. It's about knowing that God loves my child more than I ever will. I had to realize all of this. All of the statistics and risks that we had to hear - and then sign a form saying that we understood them - twice. When I handed over our precious Eliana, I imagined handing her to God. He blessed us by having a man that took her tenderly ... lovingly ... and cradled her in his own arms. And then he thanked me! This was such a tender moment for me that pierced my heart. My God loves me so very much!
I have been overwhelmed with the many people, literally thousands that have prayed for our daughter and our family. People that have responded with love to the story of our family. Family, friends and complete strangers that have cared enough to pray for us! It brings me to tears just to think how much people care. What a blessing my aching heart has needed.
Why am I feeling sad now? I sometimes wonder if I'll always cry so often. I haven't been a "teary" person in the past, but I'm certain I've shed tears daily since Eliana's birth and many days a flood of them. Tears for many reasons - sadness, fear, pain and also joy, compassion and love.
It's late and I'm tired. I'm running on not enough sleep for far too many months now. My parents left this morning after being here for a week. I'm so thankful that they were able to be here with us - supporting us, loving us and caring for us physically and emotionally. My daughter Rebecca was hit with sadness tonight too. I just held her as she fell asleep. I feel like my heart has been put through the wringer. I hope that it is a better, more compassionate one now for having endured this pain.
I am blessed by your words to me. It amazes me that my words - the raw emotion of all that has gone on in our lives - could be a blessing to someone else. I ponder on how good God is and am amazed that He would choose to use me. Who am I that He would do that? I am thankful and humbled. I have often talked with God about what I'm feeling. I've asked Him to use all of this to change me. I told Him that I thought it would be a real shame to walk through this heartache and emerge unchanged. I want Him to mold me to be more like Him.
I have figured out how to respond to posts, but wasn't sure if just answering in a new post was easier? Wasn't sure if it would be easy for people to scroll back to comments to see answers? Anyway I thought I'd answer some here.
Eliana is taking Lasix twice a day. This is a diuretic which helps her to eliminate the excess fluids in her body. She has been on this since late January to help manage the fluid in her lungs as a result of the holes in her heart. She is no longer taking digoxin. Digoxin is a medicine that made her heart pump harder to try to help the blood get to the right place instead of shunting through her holes. (Due to the holes in her heart, sometimes the oxygen rich blood would be sent back to the lungs instead of out to the body or the oxygen poor blood would be sent out to the body instead of to her lungs.)
I tried giving tylenol through her feeding tube, but it seems too thick to flush due to the tiny size of her tubing. I tried using extra amounts of water, but it didn't seem to work too well. I didn't want to give it and have most of it just sit in her tube. So far, it's worked alright today to alternate and just give that to her when she is awake. She is awake so much more now!
Eliana's hiccups come on suddenly and I have no idea why. They also end suddenly and without cause (or so it seems to me). She has gotten these since before she was born. They have never really bothered her in the past. I think it's just hard on a chest that is already sore right now. Today when she got them in the afternoon I was talking with a friend. She prayed for my sweet girl and they went away quickly. It's so sweet when an answer comes swiftly.
Eliana is trying to feed orally - but it's not going so great. I've been working on trying to manage her pain the last couple of days and not willing to push her on eating. She seems to be feeling better and with that I'll feel more comfortable in trying more feeds with the bottle. For now, I try when she is awake for about 15 minutes or until she shows me that she is not interested any longer. We are scheduled to meet with a feeding therapist on Thursday. I'm hoping that as she feels better that she'll be able to eat! I look forward to the day that we won't have to use the feeding tube!
Eliana's feeding is through and I should probably go to sleep. Morning always seems to come so quickly.
Praying for you who are reading that you would know God's love in a very real way today!
With love,
Leslie
I had to come to a place where I could say to God that no matter what the outcome, that I knew that He is good. I had to be willing to place my little girl in His hands. He had her anyway - maybe it was just that I had to be willing to let go. It was completely out of my control! Completely.
I heard someone say that facing surgery made the story of Abraham and Isaac come alive for them. That has never been a story that I really liked or understood. The willing sacrifice of your own child? How could you do that? I didn't know if I could if put in Abraham's place. It's really about trust. It's about knowing who is in control. It's about knowing that God loves my child more than I ever will. I had to realize all of this. All of the statistics and risks that we had to hear - and then sign a form saying that we understood them - twice. When I handed over our precious Eliana, I imagined handing her to God. He blessed us by having a man that took her tenderly ... lovingly ... and cradled her in his own arms. And then he thanked me! This was such a tender moment for me that pierced my heart. My God loves me so very much!
I have been overwhelmed with the many people, literally thousands that have prayed for our daughter and our family. People that have responded with love to the story of our family. Family, friends and complete strangers that have cared enough to pray for us! It brings me to tears just to think how much people care. What a blessing my aching heart has needed.
Why am I feeling sad now? I sometimes wonder if I'll always cry so often. I haven't been a "teary" person in the past, but I'm certain I've shed tears daily since Eliana's birth and many days a flood of them. Tears for many reasons - sadness, fear, pain and also joy, compassion and love.
It's late and I'm tired. I'm running on not enough sleep for far too many months now. My parents left this morning after being here for a week. I'm so thankful that they were able to be here with us - supporting us, loving us and caring for us physically and emotionally. My daughter Rebecca was hit with sadness tonight too. I just held her as she fell asleep. I feel like my heart has been put through the wringer. I hope that it is a better, more compassionate one now for having endured this pain.
I am blessed by your words to me. It amazes me that my words - the raw emotion of all that has gone on in our lives - could be a blessing to someone else. I ponder on how good God is and am amazed that He would choose to use me. Who am I that He would do that? I am thankful and humbled. I have often talked with God about what I'm feeling. I've asked Him to use all of this to change me. I told Him that I thought it would be a real shame to walk through this heartache and emerge unchanged. I want Him to mold me to be more like Him.
I have figured out how to respond to posts, but wasn't sure if just answering in a new post was easier? Wasn't sure if it would be easy for people to scroll back to comments to see answers? Anyway I thought I'd answer some here.
Eliana is taking Lasix twice a day. This is a diuretic which helps her to eliminate the excess fluids in her body. She has been on this since late January to help manage the fluid in her lungs as a result of the holes in her heart. She is no longer taking digoxin. Digoxin is a medicine that made her heart pump harder to try to help the blood get to the right place instead of shunting through her holes. (Due to the holes in her heart, sometimes the oxygen rich blood would be sent back to the lungs instead of out to the body or the oxygen poor blood would be sent out to the body instead of to her lungs.)
I tried giving tylenol through her feeding tube, but it seems too thick to flush due to the tiny size of her tubing. I tried using extra amounts of water, but it didn't seem to work too well. I didn't want to give it and have most of it just sit in her tube. So far, it's worked alright today to alternate and just give that to her when she is awake. She is awake so much more now!
Eliana's hiccups come on suddenly and I have no idea why. They also end suddenly and without cause (or so it seems to me). She has gotten these since before she was born. They have never really bothered her in the past. I think it's just hard on a chest that is already sore right now. Today when she got them in the afternoon I was talking with a friend. She prayed for my sweet girl and they went away quickly. It's so sweet when an answer comes swiftly.
Eliana is trying to feed orally - but it's not going so great. I've been working on trying to manage her pain the last couple of days and not willing to push her on eating. She seems to be feeling better and with that I'll feel more comfortable in trying more feeds with the bottle. For now, I try when she is awake for about 15 minutes or until she shows me that she is not interested any longer. We are scheduled to meet with a feeding therapist on Thursday. I'm hoping that as she feels better that she'll be able to eat! I look forward to the day that we won't have to use the feeding tube!
Eliana's feeding is through and I should probably go to sleep. Morning always seems to come so quickly.
Praying for you who are reading that you would know God's love in a very real way today!
With love,
Leslie
Saturday, April 21, 2007
Better day - Sat 4/21
Dear Friends,
Thank you for your posts, note of encouragment and prayers!!! I wish I could respond to each one of you to let you know how very much your words and prayers mean to me! Better yet, I'd love to give you a hug! I feel so very blessed to be a part of the body of Christ - in a way that I have never experienced in my life. This is a sweet balm to my soul. I thank God for each one of you - those that post, those that pray, those that have taken an interest in my precious daughter and our family. Your words of support in having her in our home instead of the hospital are very encouraging. Your prayers for her - and our family are much appreciated! I am continually overwhelmed by all of the love we have received over the last 4 months.
Today has been better for Eliana. She was smiling, "talking" and even once tried to laugh! Oh, have I mentioned how very thankful I am that these are skills that she didn't "lose" and have to relearn!
This morning, I began giving her meds every 4 hours - alternating tylenol with the stronger med. The only difficulty is that the tylenol needs to be given orally and I can't do it when she is sleeping. The other med I give through her feeding tube which is really nice as it definitely all goes in and it doesn't matter if she is awake or not.
She has only had one bad crying spell today and that was tonight around 9pm. I fixed her a bottle of pumped milk. The consistency is a little thinner than what she has been getting. She swallowed and began gaggin on it - a lot. I think it hurt her or seemed like it went down the wrong way and she started crying and crying. I wanted to give her some "good stuff" to help her system better manage with the narcotics she is taking. Poor baby!!! It's hard to comfort her as I feel I have to be careful with how I hold her so as not to cause more pain with any bouncing or moving of her chest/ribs. I often just cry and pray as I sing to her or speak softly to her.
One of the songs that I've been singing to her a lot this week is one that Joshua (7) made up just last week. It's sung to the tune of "Rubber Ducky"
Eliana, you're the one!
You make life so much fun.
I love you and you love me.
But, bet of all we're family.
Isn't that sweet? She seems to like being sung to.
She has also been getting hiccups - something she did even in utero. They have never seemed to bother her, until now. Now they hurt her chest. I can see it in her sweet face. Thankfully she doesn't seem to keep them for a long time, but there is nothing I know of to do to help stop them!
Please continue to pray for her pain - and for wisdom in how much of her meds to give her. Please pray that we would hold her in a way that doesn't hurt her. Please pray that she wouldn't get hiccups for a while. Please pray that her recovery would be smooth and swift.
I praise God for all of the good He has done in healing my little girl and bringing her home!!!
With love,
Leslie
Thank you for your posts, note of encouragment and prayers!!! I wish I could respond to each one of you to let you know how very much your words and prayers mean to me! Better yet, I'd love to give you a hug! I feel so very blessed to be a part of the body of Christ - in a way that I have never experienced in my life. This is a sweet balm to my soul. I thank God for each one of you - those that post, those that pray, those that have taken an interest in my precious daughter and our family. Your words of support in having her in our home instead of the hospital are very encouraging. Your prayers for her - and our family are much appreciated! I am continually overwhelmed by all of the love we have received over the last 4 months.
Today has been better for Eliana. She was smiling, "talking" and even once tried to laugh! Oh, have I mentioned how very thankful I am that these are skills that she didn't "lose" and have to relearn!
This morning, I began giving her meds every 4 hours - alternating tylenol with the stronger med. The only difficulty is that the tylenol needs to be given orally and I can't do it when she is sleeping. The other med I give through her feeding tube which is really nice as it definitely all goes in and it doesn't matter if she is awake or not.
She has only had one bad crying spell today and that was tonight around 9pm. I fixed her a bottle of pumped milk. The consistency is a little thinner than what she has been getting. She swallowed and began gaggin on it - a lot. I think it hurt her or seemed like it went down the wrong way and she started crying and crying. I wanted to give her some "good stuff" to help her system better manage with the narcotics she is taking. Poor baby!!! It's hard to comfort her as I feel I have to be careful with how I hold her so as not to cause more pain with any bouncing or moving of her chest/ribs. I often just cry and pray as I sing to her or speak softly to her.
One of the songs that I've been singing to her a lot this week is one that Joshua (7) made up just last week. It's sung to the tune of "Rubber Ducky"
Eliana, you're the one!
You make life so much fun.
I love you and you love me.
But, bet of all we're family.
Isn't that sweet? She seems to like being sung to.
She has also been getting hiccups - something she did even in utero. They have never seemed to bother her, until now. Now they hurt her chest. I can see it in her sweet face. Thankfully she doesn't seem to keep them for a long time, but there is nothing I know of to do to help stop them!
Please continue to pray for her pain - and for wisdom in how much of her meds to give her. Please pray that we would hold her in a way that doesn't hurt her. Please pray that she wouldn't get hiccups for a while. Please pray that her recovery would be smooth and swift.
I praise God for all of the good He has done in healing my little girl and bringing her home!!!
With love,
Leslie
Thursday, April 19, 2007
New prayer request for Eliana
Midnight - Thur 4/19
This seems small compared to the other things I've asked prayer for - but my little girl has been miserable. She has spent much of the evening off and on fussy and gassy. I probably should choose another word - she is crying. I hate to see her in pain - after all that she has been through in the last several days. And of course this would start when we are at home. I've been holding her, rocking her and trying to comfort her (off and on) for many hours tonight. I'm thankful I'm able to do that!
She has been unable or not interested in eating from the bottle since 6am. :-( For this reason I don't think it's the feeding or taking in air. She is on the same formula as before so I don't know if this is a result of something with her surgery? I'm planning to phone one of the doctors in the morning if things aren't better. I hesitate to give her anything without "approval" from a doctor given her heart surgery and the fact that she is on other meds. KWIM?
I gave her some pain meds (prescrip from hospital) and she is currently sleeping well. I'm praying for a good night's sleep for both of us. We haven't gotten much this week. Please pray that we would figure this out so she isn't hurting. It is not like her to cry and cry and it hurts my mama's heart.
I'll update more as I can. Feeding is going to be a big issue for us. I'm hoping we'll get it figured out soon so that we can say good-bye to her feeding tube!
Praising God for His goodness. We are glad to be home!
Update 10:15am Friday 4/20
She slept fine through the night. Woke at 8am fine. By 9am (feeding time) she began to cry and cry. Cried hard for 30 minutes!
I gave her pain med at 9am and I'm guessing it kicked in by 9:30am.
Called her ped and we are going in at 1pm. Please pray for my baby. She is not herself and having her cry like this just hurts my heart - not to mention it is a little frightening after what she has just gone through.
Thank you!
With love,
Leslie
Update 4pm Friday
Thank you for your prayers, advice and encouragment! I love you all! :group:
We went to see her ped who checked her out thoroughly and feels that her crying was due to pain. :cry: Oh, that makes me feel so badly! :cry: I've heard so much about how they are trying to wean her from the strong meds and onto Tylenol only. For now, we are going back to the strong meds and weaning a little more slowly.
Eliana just sobbed and sobbed - both last night (and I did give her the strong med then) and this morning. Please pray that I would have wisdom in giving her meds and in cutting back when it is appropriate. I hate to think of her hurting.
As an interesting note, our pediatrician called Eliana's cardiologist who told her that he was surprised that she was released so quickly. I commented that I didn't like hearing that she shouldn't have been released. The ped. corrected me saying he didn't say she shouldn't be released only that he was surprised that she was released so quickly. I asked why he allowed it and was told that it wasn't his decision. *sigh* I really don't want my daughter in the midst of any politics and am trusting that this really was best for her. We've had so many positive things occur this week and am believing that this was for the best too.
Our ped. did say that the upside to being home is that Eliana is not exposed to any germs/diseases/infections that she might be there at the hospital. Believing that perhaps this is why she is home. I'm also close enough to go in if needed. And her care at this point is also something that I can handle. I've learning a lot more about nursing/critical care than I ever imagined - though not so much that I don't worry and that I have all of the answers!
Thank you for your prayers. Please continue to pray for Eliana's recovery and that she would have no complications.
Thank you!Love,
Leslie
This seems small compared to the other things I've asked prayer for - but my little girl has been miserable. She has spent much of the evening off and on fussy and gassy. I probably should choose another word - she is crying. I hate to see her in pain - after all that she has been through in the last several days. And of course this would start when we are at home. I've been holding her, rocking her and trying to comfort her (off and on) for many hours tonight. I'm thankful I'm able to do that!
She has been unable or not interested in eating from the bottle since 6am. :-( For this reason I don't think it's the feeding or taking in air. She is on the same formula as before so I don't know if this is a result of something with her surgery? I'm planning to phone one of the doctors in the morning if things aren't better. I hesitate to give her anything without "approval" from a doctor given her heart surgery and the fact that she is on other meds. KWIM?
I gave her some pain meds (prescrip from hospital) and she is currently sleeping well. I'm praying for a good night's sleep for both of us. We haven't gotten much this week. Please pray that we would figure this out so she isn't hurting. It is not like her to cry and cry and it hurts my mama's heart.
I'll update more as I can. Feeding is going to be a big issue for us. I'm hoping we'll get it figured out soon so that we can say good-bye to her feeding tube!
Praising God for His goodness. We are glad to be home!
Update 10:15am Friday 4/20
She slept fine through the night. Woke at 8am fine. By 9am (feeding time) she began to cry and cry. Cried hard for 30 minutes!
I gave her pain med at 9am and I'm guessing it kicked in by 9:30am. Called her ped and we are going in at 1pm. Please pray for my baby. She is not herself and having her cry like this just hurts my heart - not to mention it is a little frightening after what she has just gone through.
Thank you!
With love,
Leslie
Update 4pm Friday
Thank you for your prayers, advice and encouragment! I love you all! :group:
We went to see her ped who checked her out thoroughly and feels that her crying was due to pain. :cry: Oh, that makes me feel so badly! :cry: I've heard so much about how they are trying to wean her from the strong meds and onto Tylenol only. For now, we are going back to the strong meds and weaning a little more slowly.
Eliana just sobbed and sobbed - both last night (and I did give her the strong med then) and this morning. Please pray that I would have wisdom in giving her meds and in cutting back when it is appropriate. I hate to think of her hurting.
As an interesting note, our pediatrician called Eliana's cardiologist who told her that he was surprised that she was released so quickly. I commented that I didn't like hearing that she shouldn't have been released. The ped. corrected me saying he didn't say she shouldn't be released only that he was surprised that she was released so quickly. I asked why he allowed it and was told that it wasn't his decision. *sigh* I really don't want my daughter in the midst of any politics and am trusting that this really was best for her. We've had so many positive things occur this week and am believing that this was for the best too.
Our ped. did say that the upside to being home is that Eliana is not exposed to any germs/diseases/infections that she might be there at the hospital. Believing that perhaps this is why she is home. I'm also close enough to go in if needed. And her care at this point is also something that I can handle. I've learning a lot more about nursing/critical care than I ever imagined - though not so much that I don't worry and that I have all of the answers!
Thank you for your prayers. Please continue to pray for Eliana's recovery and that she would have no complications.
Thank you!Love,
Leslie
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