went well. Eliana has continued to gain weight, though it has tapered off some. She is up to 11 pounds and 7 ounces. Her heart is still doing well. We aren't going to change anything regarding her meds or feeding prior to her surgery.
Some of the questions that I asked were:
Do you know what time Eliana will have her surgery?
Usually babies go early in the morning. We'd need to be here around 6am. We won't know for sure until after the Friday morning meeting with the surgeons when they decide the details for the next week's surgeries. There is always a possibility that we would get bumped and have to wait until later in the day. That would be harder as she will have to go some period of time without eating before surgery and dragging it out even longer might make for a really fussy baby.
Do we know who her surgeons will be?
Again, we'll know on Friday when we come in for Eliana's pre-op. They will decide based on the procedures needing to be done if it will require more than one surgeon - in addition to the cardiac fellow that will be helping.
How long will she be sedated?
Typically at least 24 hours due to the pain from the surgery. She will need to have some time of being awake before they will determine that she is doing well enough to be transferred to a room.
Dr C told me he had heard about my daughter raising money. He was surprised when I told him she had currently raised more than $1700. He wondered what she had been doing and I told him selling bracelets. He asked what kind and I showed him one that I was wearing. When he asked the cost, I told him $5-$10. That is a lot of bracelets! I shared that we were having a hard time keeping up with demand (a good problem!). He suggested that we raise our price - though we aren't planning to do that at this time.
He asked where she was going to donate the money and I replied Duke - earmarked for babies needing cardiac repair. He suggested that I look and see where there was a need while we were in the hospital so that if Rebecca wanted to she could donate money for something very specific such as a machine or equipment or other such things.
Dr C asked me if she wanted to be famous. I told him that she probably didn't as she is pretty shy - but that it was good for her to learn to speak out about what she is doing. He thought we could certainly have some press about her donation once she has an amount she is wanting to give.
We talked some at dinner about her goals. I suggested that she have one goal that she thought was a realistic goal and another one as one to strive for. She thought that $2500 would be a realistic goal and $5000 one to shoot for. (Of course earlier in the day she thought "a million" would be nice. I informed her that she would need to start working on corporate donations to get up into that kind of amount.)
I was also contacted by the "Little Mended Hearts" coordinator. This is a group that meets monthly (met last week) as a support group. She was a helpful gal that offered some good information to me. One of the encouraging things she shared was that often T21 (Down syndrome) children typically do better with this surgery. She also gave me the name and number of a local family who's child has had heart surgery if I wanted someone to talk with or ask questions. She shared about the difficulty and cost of parking, things to bring with me and also told me that once Eliana was transferred to a room that we would want someone with her all the time. She thought that 3-5 days was a typical time for babies to remain in ICU. She is planning to gather some information for me and hopefully give it to me on Friday.
We really have gotten great care at Duke. I am thankful to be so close to a great hospital. Just last week I was having some doubts after someone posted about the "best hospitals" and how important is was to be at one of these. I began to wonder if I had been remiss in not doing "research". Doubts and fears that certainly weren't from God. An unexpected and neat answer to prayer came in the form of a Duke neonatal nurse who came to our house to deliver a meal. She is part of the service chain at our church and someone I've never met. It was wonderful to talk with her and to be encouraged by her regarding the care at Duke.
I also wanted to share one other neat answer to a prayer that I didn't even ask! God is so in the details and this was a sweet reminder of that to me. I went to a consignment sale a couple of weeks ago. I bought a lot of things for the children, but felt a little rushed as there was more to look at than I had time to look. I was looking specifically for Eliana and was debating on a mobile and a play mat. I decided to go with the mobile since she spends a lot of time in the crib with her feeding tube - and she loves it! I began to regret not looking at the play mats though, but just put it out of my mind.
About a week after the sale, I saw one of the gals (Beth) that runs the sale. She mentioned that I could come by if I needed some clothes for Eliana as they usually had a lot in the small sizes that was donated. I thanked her and did go by. I found some adorable things for her and as I was leaving Beth held up a tightly wrapped item and asked if I needed it. I didn't even know what it was, but she told me it was a playmat. I said sure. When I got home and unwrapped all of it - I found an adorable, like new mat with toys! It is just perfect even down to having a small pillow that she needs for support when she is on her stomach. I hadn't asked for this, yet when I saw that it was what we needed I was so touched. God knows my needs and wants. This was a sweet demonstration of His love and care for me. I love how He can use each of us to be His hands and His feet to a hurting world.
We sent out our Christmas letter a couple of days ago and an announcement picture of Eliana (the one on my blog). A little late, but we really wanted people to know and to have her sweet face to remind them to pray for her! If anyone reading this wants one, I'd be happy to send it to you via email - just let me know.
More tomorrow as I'm able. I've been working on a long piece with pictures and hope to have it ready to post soon. I also want to thank Leanne and Abbey Morris for working on making my space here so pretty.
Blessings to all of you!
Leslie
Monday, April 9, 2007
One more week ...
until I hand my baby over for her surgery. Time has creeped along at times and it's hard to believe that it's almost here. We've been waiting on this day and yet I dread it too. Everyone says it is much better on the other side of surgery. I'm hoping for this. I know that on this side - the fears are overwhelming at times. This is going to be a busy week of preparation.
Monday - Last regular appointment with her cardiologist. I will update later today.
Thursday - Meeting with a child specialist to help prepare us for her pre-op and surgery. I will hopefully get helpful information to bring home for the children as well as us. The gal that I spoke with on the phone was super nice and I'm looking forward to her help.
Friday - Pre-op. We've been told to prepare for a long day. Lots of tests. Lots of information. I've been told that it will be a hard day. We'll also meet the surgeon(s) then so that we can ask questions. I've been trying to make a list.
Through out the week I'm hoping to do a heart study/lapbook with the older children. It's a pre-printed one that a friend gave me that shouldn't be too hard to pull off - we'll see. We are also working as a family to help Rebecca with her bracelet sales. I'm working on a letter with information to send to all that have asked on-line. She will be selling bracelets at a conference at the end of next week and we want her to have plenty on hand to sell.
In between these things, I'm hoping to rest, spend time with my children and prepare for surgery. We are to keep Eliana pretty isolated so we aren't planning on going anywhere to doing much other than dr appts. I want to try to prepare emotionally, physically (packing) and spiritually. If anyone has any insights, please share them.
I need to run as it's time to leave shortly for our appointment.
Monday - Last regular appointment with her cardiologist. I will update later today.
Thursday - Meeting with a child specialist to help prepare us for her pre-op and surgery. I will hopefully get helpful information to bring home for the children as well as us. The gal that I spoke with on the phone was super nice and I'm looking forward to her help.
Friday - Pre-op. We've been told to prepare for a long day. Lots of tests. Lots of information. I've been told that it will be a hard day. We'll also meet the surgeon(s) then so that we can ask questions. I've been trying to make a list.
Through out the week I'm hoping to do a heart study/lapbook with the older children. It's a pre-printed one that a friend gave me that shouldn't be too hard to pull off - we'll see. We are also working as a family to help Rebecca with her bracelet sales. I'm working on a letter with information to send to all that have asked on-line. She will be selling bracelets at a conference at the end of next week and we want her to have plenty on hand to sell.
In between these things, I'm hoping to rest, spend time with my children and prepare for surgery. We are to keep Eliana pretty isolated so we aren't planning on going anywhere to doing much other than dr appts. I want to try to prepare emotionally, physically (packing) and spiritually. If anyone has any insights, please share them.
I need to run as it's time to leave shortly for our appointment.
Wednesday, April 4, 2007
Happenings around here
Hmmm ... sometimes I wish I had a "catchy" title for each entry. I often just want to put "here's an update" as that is often what it is. LOL I don't suppose anyone would really mind if I'm not creative. I just don't want my writing to be boring. I know that I've shared that I've never felt writing was a strength of mine, though I'm learning a lot through using this blog to share my thoughts and feelings. It's been a great outlet for me - and a wonderful way to share information with a lot of people. I continue to find that my days have few hours - or so it often seems - and way too much to do. I do find that I have a lot more time now that I'm not pumping around the clock which is a nice benefit. I'm not over being sad about that though. Giving that up was a difficult choice - one that I'm hoping to one day look back on without regrets. I can't say that I'm there now. I'm starting to tear up just thinking about it. Let me stop rambling about that and move on to happier topics!
Yesterday, Tuesday, we had a visit with Eliana's pediatrician. Eliana is doing well. She is stable and has continued to gain weight! She is up to 11 pounds and 4 ounces. She is even getting some "rolls" - you know the kind that cause the lines around the wrist and on the arms and legs? I love cute little baby pudge! We don't need to change her meds either. She is working on holding up her head. I love the way Dr L appreciates all of her milestones and achievments no matter how small they might seem (as they aren't small for Eliana).
We haven't seen Dr L in a month (she was out of town during our last visit) and Rebecca wanted to deliver a bracelet Dr L had ordered so she went with me. She had requested "blue" so Rebecca brought in about 10 blue bracelets so that she could pick which one she liked. Well, after seeing all of the bracelets, Dr. L invited the other nurses and doctors to come in. She told them about what Rebecca was doing and subsquently, Rebecca sold 10 bracelets and received a couple of donations.
We hadn't expected to sell so many bracelets since Rebecca had an engagement to sell bracelets on Wed! So we went home and started beading! My dear friend Catherine and her daughters came over and helped make bracelets. By the end of the day Rebecca had 40 bracelets to sell.
Early on Wed morning a sweet friend arrived to pick up Rebecca to take to her college class. We had prayed with Rebecca about what she would be doing as she was nervous about speaking to a group of people she didn't know. (My friend is a professor of a college class and had invited Rebecca to share about what she was doing and to bring some bracelets to sell.) Rebeca was prepared to say a little something - and very nervous about the whole thing!
The night before, I asked what she was nervous about (hoping to help dispel some of her fears), it was the typical public speaking fears - that people would laugh at her or that she would forget what she was going to say (how could she forget? this is her life!). I tried to encourage her and to remind her that she was doing this for others. She is shy though and this was a big step for her. She wanted me to go with her, but I assured her that my friend Pam would take great care of her!
They left a little early so that they could go by the hospital. They sold a lot of the bracelets there. Then it was time for the class. Pam had told the students about Rebecca and introduced her by sharing some information about her as well. Rebecca only spoke briefly - a couple of minutes at most - which she was happy about. It was a good experience for her. Thank you so much Pam for coordinating all of this!
When Rebecca came home I asked if she had sold any bracelets. I wasn't sure what to expect from a group of college students. She nodded yes with a smile. Then I asked how many she had sold. Her answer - ALL of them! What a surprise! She sold 40 bracelets today! That's her biggest sales day thus far. In the last two days she has raised about $500. Wow!!!
It always brings me to tears to see how God is working through Eliana to touch people's lives. And how He is working through Rebecca in the same way. While we were beading and talking last night, she shared with me a couple of songs that she has written about Eliana. If she'll write the words for me (and give me permission) then I'll share them here. But basically they were about how much she loves Eliana and how she is great. One talked about how if someone didn't want to know her because she is different that it would be their loss.
Some people have asked about how to buy a bracelet. I'll work on putting some information on this blog. It would probably be easiest if you would just email me - and please be patient as I'm pretty slow on responding many days.
Thank you always for your prayers, love and friendship!
With love,
Leslie
PS I haven't forgotten the promise of more pictures. I'm working on it!!!
Yesterday, Tuesday, we had a visit with Eliana's pediatrician. Eliana is doing well. She is stable and has continued to gain weight! She is up to 11 pounds and 4 ounces. She is even getting some "rolls" - you know the kind that cause the lines around the wrist and on the arms and legs? I love cute little baby pudge! We don't need to change her meds either. She is working on holding up her head. I love the way Dr L appreciates all of her milestones and achievments no matter how small they might seem (as they aren't small for Eliana).
We haven't seen Dr L in a month (she was out of town during our last visit) and Rebecca wanted to deliver a bracelet Dr L had ordered so she went with me. She had requested "blue" so Rebecca brought in about 10 blue bracelets so that she could pick which one she liked. Well, after seeing all of the bracelets, Dr. L invited the other nurses and doctors to come in. She told them about what Rebecca was doing and subsquently, Rebecca sold 10 bracelets and received a couple of donations.
We hadn't expected to sell so many bracelets since Rebecca had an engagement to sell bracelets on Wed! So we went home and started beading! My dear friend Catherine and her daughters came over and helped make bracelets. By the end of the day Rebecca had 40 bracelets to sell.
Early on Wed morning a sweet friend arrived to pick up Rebecca to take to her college class. We had prayed with Rebecca about what she would be doing as she was nervous about speaking to a group of people she didn't know. (My friend is a professor of a college class and had invited Rebecca to share about what she was doing and to bring some bracelets to sell.) Rebeca was prepared to say a little something - and very nervous about the whole thing!
The night before, I asked what she was nervous about (hoping to help dispel some of her fears), it was the typical public speaking fears - that people would laugh at her or that she would forget what she was going to say (how could she forget? this is her life!). I tried to encourage her and to remind her that she was doing this for others. She is shy though and this was a big step for her. She wanted me to go with her, but I assured her that my friend Pam would take great care of her!
They left a little early so that they could go by the hospital. They sold a lot of the bracelets there. Then it was time for the class. Pam had told the students about Rebecca and introduced her by sharing some information about her as well. Rebecca only spoke briefly - a couple of minutes at most - which she was happy about. It was a good experience for her. Thank you so much Pam for coordinating all of this!
When Rebecca came home I asked if she had sold any bracelets. I wasn't sure what to expect from a group of college students. She nodded yes with a smile. Then I asked how many she had sold. Her answer - ALL of them! What a surprise! She sold 40 bracelets today! That's her biggest sales day thus far. In the last two days she has raised about $500. Wow!!!
It always brings me to tears to see how God is working through Eliana to touch people's lives. And how He is working through Rebecca in the same way. While we were beading and talking last night, she shared with me a couple of songs that she has written about Eliana. If she'll write the words for me (and give me permission) then I'll share them here. But basically they were about how much she loves Eliana and how she is great. One talked about how if someone didn't want to know her because she is different that it would be their loss.
Some people have asked about how to buy a bracelet. I'll work on putting some information on this blog. It would probably be easiest if you would just email me - and please be patient as I'm pretty slow on responding many days.
Thank you always for your prayers, love and friendship!
With love,
Leslie
PS I haven't forgotten the promise of more pictures. I'm working on it!!!
Monday, April 2, 2007
My "Real Girl"
Hi Friends,
It was suggested to me that I enter my daughter Rebecca in the "Real Girl" contest sponsored by the American Girl company. I worked hard writing this entry and received feedback and constructive critique from several of my friends. I'm grateful for their help! I wanted to share the entry as some have asked to read it.
The company indicates that winners will hear by May 1st. We'll post if we hear any good news. Enjoy!
*~*~*~*~*~*~*~*
While reading about your search for the 2007 Real Girl, I couldn't help but think of our daughter, Rebecca. As the second child and only girl in a family with 4 brothers, she has been confronted with a difficult family crisis, and she has certainly risen to the challenge.
Rebecca was elated to learn that she had a little sister on December 16, 2006 when we welcomed Eliana Joy to our family. She spent many days praying for, anticipating and helping to prepare for the baby and it was difficult for her tender heart when she learned that Eliana was born with congenital heart defects, in addition to Down Syndrome. Eliana would have to spend time in the Special Care (NICU) nursery and in the months to come, face open heart surgery.
Rebecca visited her new sister in the NICU, and after seeing her struggle along with the other NICU newborns, she began to think of ways she could help babies that needed special care. Her compassionate heart led her to make two knitted hats, which were given to the NICU nursery. Continuing her efforts, Rebecca began making beaded bracelets, deciding she would sell them in an effort to raise funds for babies needing heart surgery.
"Wholehearted" is the name that Rebecca chose for her business, representing the whole heart she wants for her sister and other babies. Rebecca works diligently to make creative and unique bracelets, all the while helping take care of her younger brothers when Eliana requires special care from me - a feeding tube and another hospital stay. She has stepped up to the responsibilities with love to assist our family through this incredibly difficult time.
Rebecca wants to share her vision of helping babies with heart defects. Her compassion, coupled with the beautiful bracelets, impressed her customers as she was raising money. Her concern for these special babies is the driving force behind her fundraising. She tells potential customers about her sister and the desire to help babies in need. Initially she went door to door in our neighborhood, selling her bracelets and raising $72. I encouraged her to try to make it to $100, and then she could donate all of the money to Duke Children's Hospital where Eliana is being treated and will have surgery to repair her heart.
Rebecca continued to make bracelets and was offered several opportunities to sell at other venues. Gathering her courage and relying on her faith, she decided to take advantage of these opportunities for fundraising. As she shares her heart with others, the response has been overwhelming. She has donated over 100 hours and raised over $1100 for other babies needing heart repair. In April, she will be attending a special needs conference to raise more money. This conference will occur while Eliana is in the hospital recovering from her own heart surgery.
I am so proud of her diligence, creativity and generousity. Rebecca is working hard to make a difference in the lives of others, a quality I believe represents a real American Girl!
It was suggested to me that I enter my daughter Rebecca in the "Real Girl" contest sponsored by the American Girl company. I worked hard writing this entry and received feedback and constructive critique from several of my friends. I'm grateful for their help! I wanted to share the entry as some have asked to read it.
The company indicates that winners will hear by May 1st. We'll post if we hear any good news. Enjoy!
*~*~*~*~*~*~*~*
While reading about your search for the 2007 Real Girl, I couldn't help but think of our daughter, Rebecca. As the second child and only girl in a family with 4 brothers, she has been confronted with a difficult family crisis, and she has certainly risen to the challenge.
Rebecca was elated to learn that she had a little sister on December 16, 2006 when we welcomed Eliana Joy to our family. She spent many days praying for, anticipating and helping to prepare for the baby and it was difficult for her tender heart when she learned that Eliana was born with congenital heart defects, in addition to Down Syndrome. Eliana would have to spend time in the Special Care (NICU) nursery and in the months to come, face open heart surgery.
Rebecca visited her new sister in the NICU, and after seeing her struggle along with the other NICU newborns, she began to think of ways she could help babies that needed special care. Her compassionate heart led her to make two knitted hats, which were given to the NICU nursery. Continuing her efforts, Rebecca began making beaded bracelets, deciding she would sell them in an effort to raise funds for babies needing heart surgery.
"Wholehearted" is the name that Rebecca chose for her business, representing the whole heart she wants for her sister and other babies. Rebecca works diligently to make creative and unique bracelets, all the while helping take care of her younger brothers when Eliana requires special care from me - a feeding tube and another hospital stay. She has stepped up to the responsibilities with love to assist our family through this incredibly difficult time.
Rebecca wants to share her vision of helping babies with heart defects. Her compassion, coupled with the beautiful bracelets, impressed her customers as she was raising money. Her concern for these special babies is the driving force behind her fundraising. She tells potential customers about her sister and the desire to help babies in need. Initially she went door to door in our neighborhood, selling her bracelets and raising $72. I encouraged her to try to make it to $100, and then she could donate all of the money to Duke Children's Hospital where Eliana is being treated and will have surgery to repair her heart.
Rebecca continued to make bracelets and was offered several opportunities to sell at other venues. Gathering her courage and relying on her faith, she decided to take advantage of these opportunities for fundraising. As she shares her heart with others, the response has been overwhelming. She has donated over 100 hours and raised over $1100 for other babies needing heart repair. In April, she will be attending a special needs conference to raise more money. This conference will occur while Eliana is in the hospital recovering from her own heart surgery.
I am so proud of her diligence, creativity and generousity. Rebecca is working hard to make a difference in the lives of others, a quality I believe represents a real American Girl!
Wednesday, March 28, 2007
Another good-bye ... to nursing my baby
**I've added pictures to the entry just prior to this one. Please be sure to scroll down to see them.
**Note - this entry has to do with breastfeeding so skip it if you don't want to read on this topic. Not sure if there are many men reading, but just wanted you to be forewarned. ;-)
Well, I guess it's time to face the inevitable. I'm probably pumping for the last time. It's been 3 1/2 months and the reality is my supply is just not going to make it. I've tried - maybe not doing everything as I should, but I've really tried. In some ways it is amazing that I've held out this long - probably just shows how stubborn I can be. I wanted this to work and was willing to do whatever I could. Ultimately though it just isn't in my control and I need to surrender.
I wanted so much for this to work. I've experienced the joy of nursing this little one and for that I am thankful. I wish that it could have been for longer. Perhaps if her heart had been stronger it might have worked. Who knows? I know that for some it may be hard to understand all of the emotions that are tied into this for me. For others, you will understand. I have loved nursing my children. I loved that this was something that only I could do for them. I loved the ease, convenience and the knowledge that I was doing something special, important and healthy for my baby. I loved everything about it. It never seemed a burden or an inconvenience to me as I truly loved this part of the relationship.
I weaned Daniel sooner than I wanted to and it was shortly after finding out I was pregnant with Eliana. I still remember the day - April 27. (It's also my Mom's birthday.) I knew that my pregnancy would be rough and I consoled myself with knowing that I had another little one to nurse.
So much of the last couple of months has been learning to do things differently. I had expected that adding a 6th child to our family would be easy. I foresaw no problems with folding a little one into our lives and continuing on with the things that had always worked so well with my other children. Perhaps this was prideful. I don't know. I do know that nothing has prepared me for this experience.
So many of the ways that I love to parent my children - ways that are easy and comfortable to me - have been stripped away from me this time. I often feel like a novice though I know that my years of parenting experience have to be of benefit to me somehow.
I find myself yet again late at night typing, pumping and crying. So sad to be letting go. Please pray for this sad mommy's heart. I really need to go to sleep now. My sweet baby girl is asleep and our next feeding isn't until 6am.
It's heartbreaking sometimes to let go of your dreams. I know that in the midst of the tears and sleepless nights that a new dream will come.
**Note - this entry has to do with breastfeeding so skip it if you don't want to read on this topic. Not sure if there are many men reading, but just wanted you to be forewarned. ;-)
Well, I guess it's time to face the inevitable. I'm probably pumping for the last time. It's been 3 1/2 months and the reality is my supply is just not going to make it. I've tried - maybe not doing everything as I should, but I've really tried. In some ways it is amazing that I've held out this long - probably just shows how stubborn I can be. I wanted this to work and was willing to do whatever I could. Ultimately though it just isn't in my control and I need to surrender.
I wanted so much for this to work. I've experienced the joy of nursing this little one and for that I am thankful. I wish that it could have been for longer. Perhaps if her heart had been stronger it might have worked. Who knows? I know that for some it may be hard to understand all of the emotions that are tied into this for me. For others, you will understand. I have loved nursing my children. I loved that this was something that only I could do for them. I loved the ease, convenience and the knowledge that I was doing something special, important and healthy for my baby. I loved everything about it. It never seemed a burden or an inconvenience to me as I truly loved this part of the relationship.
I weaned Daniel sooner than I wanted to and it was shortly after finding out I was pregnant with Eliana. I still remember the day - April 27. (It's also my Mom's birthday.) I knew that my pregnancy would be rough and I consoled myself with knowing that I had another little one to nurse.
So much of the last couple of months has been learning to do things differently. I had expected that adding a 6th child to our family would be easy. I foresaw no problems with folding a little one into our lives and continuing on with the things that had always worked so well with my other children. Perhaps this was prideful. I don't know. I do know that nothing has prepared me for this experience.
So many of the ways that I love to parent my children - ways that are easy and comfortable to me - have been stripped away from me this time. I often feel like a novice though I know that my years of parenting experience have to be of benefit to me somehow.
I find myself yet again late at night typing, pumping and crying. So sad to be letting go. Please pray for this sad mommy's heart. I really need to go to sleep now. My sweet baby girl is asleep and our next feeding isn't until 6am.
It's heartbreaking sometimes to let go of your dreams. I know that in the midst of the tears and sleepless nights that a new dream will come.
Tuesday, March 27, 2007
Good-bye 3am!
Eliana had a visit with her cardiologist yesterday. I had a list of questions. Seems as surgery gets closer that there is more and more to wonder about. A couple of my questions involved her feeds. Her rate of feed is 75ml per hour. She started at 75ml feeds which meant that each feed took an hour. (No, the whole post won't be a math lesson.) When her feeds increased to 85ml and then to 90 with the same rate it obviously took longer to get a feed in. I asked about changing the rate and he said it was fine to increase it to see how she tolerates it. We can try to keep the feeds to an hour.
He looked at his notes and commented on her surgery being scheduled for April 16. Then said I think she'll be alright until then. That caught me off guard - he is my more laid back doctor. I said we could move it up if it needed to happen sooner. He said, no that he thought she would be alright. It's just a juggle now with her weight gain and her meds. Trying to find and keep a balance. *sigh* Now I'm wondering if we should have pushed to have it sooner. Not going to second guess it though. If she needs it sooner, we'll just deal with it then.
Eliana has continued to gain weight. She is up to 10 pounds and 11 ounces now. She is even started to have some rolls. I love seeing that on my tiny little girl! Dr C mentioned that her weight will probably taper off and that things might get a little hard over the next week or so for her. Now this will probably have me questioning every little thing. Like tonight when she was more sweaty than usual ... is this something different or just a result of a warmer than usual day around here. I need to be at peace with all of this!
The next question ... "Is there any way we can eliminate the 3am feeding?" Said with much hope in my voice. He replied "Oh you are still doing feeds every 3 hours?". YES! We've been doing round the clock feeds for 3.5 months now. Many, many sleepless nights for Roger and I! He said he would try to work it out for me and let me know.
At the end of the appt, he left and had someone join me to help reinsert Eliana's feeding tube. (I've done it 11 times now!) She had pulled it out during her 9am feeding. I could see that it was going to happen and had gone to get the tape to reapply it. She was quicker than I was though.
She then had to have blood drawn for some lab work. Poor little one cried and cried. Today she has a bruised heel from it being squeezed so much to get the blood out.
I fed Eliana a bottle and then as I was leaving, I hadn't yet heard from the cardiologist so I tracked him down. I really wanted an answer to the question about the feeding - especially if it might mean a little more sleep!!!
He agreed that we could eliminate that feeding!!! Where is the happy dance icon?! Wow! We can both sleep from 1am until almost 6am. That's 5 uninterupted hours!
She will be taking larger feeds at each of the other 7 feeds to make up for missing this one.
We didn't skip last night as I didn't want to increase her fluids during the night as I wanted to be able to see how she tolerated it. She has done fine with it today so I'm looking forward to actually being asleep at 3am. I've been awake until 3am almost every night since Eliana has been born. I'm looking forward to this.
It will be especially nice since I'm doing the feeding schedule alone while my family is on a field trip/vaction. Please keep praying for all of us. Pray for safety, patience, peace and lots of sweet memories for all of us while we are separated. I'm sad to be missing this trip and my family, but know that it is the best for Eliana right now.
Hmmm ... just a couple of hours until bed time. :-) Guess I should go get ready. I'll try to post again tomorrow and share some pictures.
Love,
Leslie
He looked at his notes and commented on her surgery being scheduled for April 16. Then said I think she'll be alright until then. That caught me off guard - he is my more laid back doctor. I said we could move it up if it needed to happen sooner. He said, no that he thought she would be alright. It's just a juggle now with her weight gain and her meds. Trying to find and keep a balance. *sigh* Now I'm wondering if we should have pushed to have it sooner. Not going to second guess it though. If she needs it sooner, we'll just deal with it then.
Eliana has continued to gain weight. She is up to 10 pounds and 11 ounces now. She is even started to have some rolls. I love seeing that on my tiny little girl! Dr C mentioned that her weight will probably taper off and that things might get a little hard over the next week or so for her. Now this will probably have me questioning every little thing. Like tonight when she was more sweaty than usual ... is this something different or just a result of a warmer than usual day around here. I need to be at peace with all of this!
The next question ... "Is there any way we can eliminate the 3am feeding?" Said with much hope in my voice. He replied "Oh you are still doing feeds every 3 hours?". YES! We've been doing round the clock feeds for 3.5 months now. Many, many sleepless nights for Roger and I! He said he would try to work it out for me and let me know.
At the end of the appt, he left and had someone join me to help reinsert Eliana's feeding tube. (I've done it 11 times now!) She had pulled it out during her 9am feeding. I could see that it was going to happen and had gone to get the tape to reapply it. She was quicker than I was though.
She then had to have blood drawn for some lab work. Poor little one cried and cried. Today she has a bruised heel from it being squeezed so much to get the blood out.
I fed Eliana a bottle and then as I was leaving, I hadn't yet heard from the cardiologist so I tracked him down. I really wanted an answer to the question about the feeding - especially if it might mean a little more sleep!!!
He agreed that we could eliminate that feeding!!! Where is the happy dance icon?! Wow! We can both sleep from 1am until almost 6am. That's 5 uninterupted hours!
She will be taking larger feeds at each of the other 7 feeds to make up for missing this one. We didn't skip last night as I didn't want to increase her fluids during the night as I wanted to be able to see how she tolerated it. She has done fine with it today so I'm looking forward to actually being asleep at 3am. I've been awake until 3am almost every night since Eliana has been born. I'm looking forward to this.
It will be especially nice since I'm doing the feeding schedule alone while my family is on a field trip/vaction. Please keep praying for all of us. Pray for safety, patience, peace and lots of sweet memories for all of us while we are separated. I'm sad to be missing this trip and my family, but know that it is the best for Eliana right now.
Hmmm ... just a couple of hours until bed time. :-) Guess I should go get ready. I'll try to post again tomorrow and share some pictures.
Love,
Leslie
Friday, March 23, 2007
Wholehearted Update
I wanted to share an update on Rebecca's Wholehearted bracelet sales. She is such a sweet example to me and I'm so very proud of her! When she first started this project, she began selling elastic bracelets on our street. Most were $3-$5 and she raised $72 this way. When she asked about donating the money, I encouraged her to have a goal of $100 before she made the donation. It seemed a reasonable and reachable goal.
Rebecca expanded to selling memory wire bracelets in addition to the elastic. She has had several opportunities to sell her bracelets. Since setting that first goal - she has more than surpassed itl! She visited my dh's work again and the people there so receptive and encouraging to her. She has also received some donations and special ordersfrom friends and family. Thus far she has raised the following amount:
$1081.00
All of this money will go to help other children that need heart repair surgery.
I have been trying to find out if there might be some options for Rebecca to sell her bracelets at the hospital where Eliana will be having her surgery (Duke) as well as what we needed to do to make the donation. I played phone tag with one person, then decided to try the Development Office. The gal that I spoke with was very encouraging about Rebecca's efforts to raise money. When I told her that she had raised over $1000, her response was "Wow! we need her on our team!". Rebecca loved hearing that.
She told me that she would like to make a "big deal" of Rebecca handing over the money. She plans to set up a time when Eliana's cardiologist can accept the check from her formally. I'm hoping for pictures and perhaps a story to share with others too. We'll see. I also asked about specifying the donation for babies needing heart repair and they are more than happy to accomodate that request!
We initially thought about making the donation during Eliana's appointment next week, but then decided to wait until after Rebecca has the opportunity to sell bracelets at the Special Needs Conference next month and finish up some special orders.
We've talked some about a new goal, but haven't set one yet. We'll see how far this will go.
One of my friends asked if Rebecca minded getting help in making the bracelets since this was her project. I didn't think she would but asked what she thought about it. She thought it was a great idea as the more people that were helping, the better.
Sweetheart!
I'm so thankful for all of the precious children that God has placed in our family. We have been exceedingly and abundantly blessed. My hands and heart are so full ... with lots and lots of love.
Rebecca expanded to selling memory wire bracelets in addition to the elastic. She has had several opportunities to sell her bracelets. Since setting that first goal - she has more than surpassed itl! She visited my dh's work again and the people there so receptive and encouraging to her. She has also received some donations and special ordersfrom friends and family. Thus far she has raised the following amount:
$1081.00
All of this money will go to help other children that need heart repair surgery.
I have been trying to find out if there might be some options for Rebecca to sell her bracelets at the hospital where Eliana will be having her surgery (Duke) as well as what we needed to do to make the donation. I played phone tag with one person, then decided to try the Development Office. The gal that I spoke with was very encouraging about Rebecca's efforts to raise money. When I told her that she had raised over $1000, her response was "Wow! we need her on our team!". Rebecca loved hearing that.
She told me that she would like to make a "big deal" of Rebecca handing over the money. She plans to set up a time when Eliana's cardiologist can accept the check from her formally. I'm hoping for pictures and perhaps a story to share with others too. We'll see. I also asked about specifying the donation for babies needing heart repair and they are more than happy to accomodate that request!
We initially thought about making the donation during Eliana's appointment next week, but then decided to wait until after Rebecca has the opportunity to sell bracelets at the Special Needs Conference next month and finish up some special orders.
We've talked some about a new goal, but haven't set one yet. We'll see how far this will go.
One of my friends asked if Rebecca minded getting help in making the bracelets since this was her project. I didn't think she would but asked what she thought about it. She thought it was a great idea as the more people that were helping, the better.
Sweetheart!
I'm so thankful for all of the precious children that God has placed in our family. We have been exceedingly and abundantly blessed. My hands and heart are so full ... with lots and lots of love.
Tuesday, March 20, 2007
We have a date!
Hi Friends,
It's been a week since the cardiologist told me that we needed to pick a date. It was hard to wrap my head around "picking" something so important. How could we really know what was best?! Shouldn't they be telling us that? We've prayed about it, but it wasn't like there was any writing on the wall. In the end, I told my dh that I though that the time frame we were given included all of the "good times" and that we are safe choosing any of them.
Trying to come up with a decision has been hard. Roger wanted to pick the first available date. I was less comfortable with this as it felt a little too rushed for me (and ultimately that date was not available any way). We tried to look at a variety of factors including day of the week (to separate the pre-op and surgery from being on back to back days), care for our children, and other things such as Easter.
Eliana will be having open heart surgery on Monday April 16th. Please mark it on your calendars and be praying for all of us!!!
We will go in the Friday prior to that for her pre-op at 9:30am. I've been told to expect this to be a long and difficult day. We will be meeting with the surgeon(s) on that day to discuss what will be happening, having our questions answered and hearing information that will be hard to digest (like mortality rates). Eliana will undergo a variety of tests including a sedated echocardiogram. an EKG, a physical exam and blood/lab work.
We'll have the week-end to recover and get some rest. We'll likely go in very early on Monday morning for her surgery. We'll know more details about the surgery after her pre-op. I've been told that it will likely take about 4.5 hours.
From other moms that have been through this, I've been told that the days prior to and especially the day before are just horrible! I can see that coming. Today when I called and had the surgery date confirmed I started crying. It is so hard for me to really think about what is coming.
I've been reading about other people's experiences and looking at pictures to try and prepare myself for what lies ahead. I know that I've said this before, but even though this surgery has been done before - even countless times, this our first time. This is my baby. If any of you reading this have things to share that might help us, please feel free to do that! It's so hard to know what to do or what to ask - this is all so foreign to us!
Things to pray about include:
*Eliana's health. Please pray that she remains stable in terms of her heart and the fluid in her lungs. Please pray that she doesn't get any type of sickness as this could postpone her surgery. She had a good ped visit yesterday. She continues to gain weight and is up to 10lbs 5 ounces. Her lungs sounded good (no extra fluid), her heart continues to work hard and her liver looked better (pressure from the heart affects the location of the liver).
*Health of our family. Please pray that all of us would remain healthy so that we can enjoy being around Eliana and not worry about passing anything to her.
*Wisdom in making decisions - from activities to participate in to how we spend our time at home. I've decided not to go on our family trip. I'll miss being with my family so very much, but I really think that this is what is best for Eliana.
*Surgeons. Please pray for steady and skilled hands. Pray that they stay in good health and get plenty of sleep the night before. Pray that there is nothing going on in their lives that would distract them.
*Family time. Please pray that we would have some great time together as a family before Eliana's surgery. Please pray that we can be honest with our feelings and that we can deal with them together. I'm expecting that emotionally this will be hardest for my daughter and I. Pray that we can use this to learn how to really lean on and trust God.
*Scheduling - We have a lot to arrange. The most important being childcare. We will also look to arrange meals and various helps around the house (cleaning, shopping, etc). Also having people able to visit and be with us while we are in the hospital.
*Sleep. We have not done a good job in managing this and would love to be better about doing this.
*Pre-op and surgery. That all is successful. That no mistakes are made. That the repair is done completely and correctly. Healing would progress without any complications.
I have several other things that I want to share, but will have to do that in another day or so. I already feel like I've talked your ears off! We appreciate your prayers, encouragment and support.
With love,
Leslie
It's been a week since the cardiologist told me that we needed to pick a date. It was hard to wrap my head around "picking" something so important. How could we really know what was best?! Shouldn't they be telling us that? We've prayed about it, but it wasn't like there was any writing on the wall. In the end, I told my dh that I though that the time frame we were given included all of the "good times" and that we are safe choosing any of them.
Trying to come up with a decision has been hard. Roger wanted to pick the first available date. I was less comfortable with this as it felt a little too rushed for me (and ultimately that date was not available any way). We tried to look at a variety of factors including day of the week (to separate the pre-op and surgery from being on back to back days), care for our children, and other things such as Easter.
Eliana will be having open heart surgery on Monday April 16th. Please mark it on your calendars and be praying for all of us!!!
We will go in the Friday prior to that for her pre-op at 9:30am. I've been told to expect this to be a long and difficult day. We will be meeting with the surgeon(s) on that day to discuss what will be happening, having our questions answered and hearing information that will be hard to digest (like mortality rates). Eliana will undergo a variety of tests including a sedated echocardiogram. an EKG, a physical exam and blood/lab work.
We'll have the week-end to recover and get some rest. We'll likely go in very early on Monday morning for her surgery. We'll know more details about the surgery after her pre-op. I've been told that it will likely take about 4.5 hours.
From other moms that have been through this, I've been told that the days prior to and especially the day before are just horrible! I can see that coming. Today when I called and had the surgery date confirmed I started crying. It is so hard for me to really think about what is coming.
I've been reading about other people's experiences and looking at pictures to try and prepare myself for what lies ahead. I know that I've said this before, but even though this surgery has been done before - even countless times, this our first time. This is my baby. If any of you reading this have things to share that might help us, please feel free to do that! It's so hard to know what to do or what to ask - this is all so foreign to us!
Things to pray about include:
*Eliana's health. Please pray that she remains stable in terms of her heart and the fluid in her lungs. Please pray that she doesn't get any type of sickness as this could postpone her surgery. She had a good ped visit yesterday. She continues to gain weight and is up to 10lbs 5 ounces. Her lungs sounded good (no extra fluid), her heart continues to work hard and her liver looked better (pressure from the heart affects the location of the liver).
*Health of our family. Please pray that all of us would remain healthy so that we can enjoy being around Eliana and not worry about passing anything to her.
*Wisdom in making decisions - from activities to participate in to how we spend our time at home. I've decided not to go on our family trip. I'll miss being with my family so very much, but I really think that this is what is best for Eliana.
*Surgeons. Please pray for steady and skilled hands. Pray that they stay in good health and get plenty of sleep the night before. Pray that there is nothing going on in their lives that would distract them.
*Family time. Please pray that we would have some great time together as a family before Eliana's surgery. Please pray that we can be honest with our feelings and that we can deal with them together. I'm expecting that emotionally this will be hardest for my daughter and I. Pray that we can use this to learn how to really lean on and trust God.
*Scheduling - We have a lot to arrange. The most important being childcare. We will also look to arrange meals and various helps around the house (cleaning, shopping, etc). Also having people able to visit and be with us while we are in the hospital.
*Sleep. We have not done a good job in managing this and would love to be better about doing this.
*Pre-op and surgery. That all is successful. That no mistakes are made. That the repair is done completely and correctly. Healing would progress without any complications.
I have several other things that I want to share, but will have to do that in another day or so. I already feel like I've talked your ears off! We appreciate your prayers, encouragment and support.
With love,
Leslie
Saturday, March 17, 2007
St. Patricks Day Fun
I thought a light-hearted look at our family might be a fun change of pace.
Our schooling has looked very different over the last couple of months. A lot of real life lessons!!! We have enjoyed the new "Fold and Learns" offered at www.fiveinarowdigital.com My 11yo, 7yo and 5yo are having fun with the holiday ones that we have done. They are easy and fun.
We started on the St Patricks Day one on Friday (late afternoon). Nothing like waiting until the last minute, huh? I asked what they knew about St Patrick (we've never studied him). My 7yo pipes up with a lot of facts about his life and I was surprised. It looks like they have learned a good bit of history from a Veggie Tales movie. (Sumo of the Opera)
One of the items we made into a little book were some photos of famous sites in Ireland. The children were looking at them and talking about which ones they would like to visit. Apparently, my 5yo decided that when St Patty's Day arrived that we would be visiting them. LOL He told my friend about our upcoming travels. She told him that she'd like to go with him and asked him to pack her in his suitcase - until he told her that we were going by car. 
This same 5yo is so proud of his work. He rushed to show his Daddy what he had made as soon as he arrived home from work. (Arrived him in time to see me inserting yet another tube for Eliana. I'm up to 8 times now.)
As a fun addition to St Patty's Day we decided to have some Irish food. Thanks to some suggestions on the FIAR board we had "bangers and mash" (sausage and mashed potatoes). I also made some shamrock shaped bread. (I used bread sticks to shape 3 hearts and then added a stem.) I brushed them with garlic butter tinted green. The kids thought this was great. And it was soooo easy! For desert we had green milkshakes. They thought this was a treat too. Dinner was an easy meal with laughter and smiles.
Just a few little things - but memories are made of the sweet little things.
Our schooling has looked very different over the last couple of months. A lot of real life lessons!!! We have enjoyed the new "Fold and Learns" offered at www.fiveinarowdigital.com My 11yo, 7yo and 5yo are having fun with the holiday ones that we have done. They are easy and fun.
We started on the St Patricks Day one on Friday (late afternoon). Nothing like waiting until the last minute, huh? I asked what they knew about St Patrick (we've never studied him). My 7yo pipes up with a lot of facts about his life and I was surprised. It looks like they have learned a good bit of history from a Veggie Tales movie. (Sumo of the Opera)
One of the items we made into a little book were some photos of famous sites in Ireland. The children were looking at them and talking about which ones they would like to visit. Apparently, my 5yo decided that when St Patty's Day arrived that we would be visiting them. LOL He told my friend about our upcoming travels. She told him that she'd like to go with him and asked him to pack her in his suitcase - until he told her that we were going by car. This same 5yo is so proud of his work. He rushed to show his Daddy what he had made as soon as he arrived home from work. (Arrived him in time to see me inserting yet another tube for Eliana. I'm up to 8 times now.)
As a fun addition to St Patty's Day we decided to have some Irish food. Thanks to some suggestions on the FIAR board we had "bangers and mash" (sausage and mashed potatoes). I also made some shamrock shaped bread. (I used bread sticks to shape 3 hearts and then added a stem.) I brushed them with garlic butter tinted green. The kids thought this was great. And it was soooo easy! For desert we had green milkshakes. They thought this was a treat too. Dinner was an easy meal with laughter and smiles.
Just a few little things - but memories are made of the sweet little things.
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