**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.
Wednesday, March 28, 2007
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.
Tuesday, March 13, 2007
Anxiety or encouragment?
I was reading in Proverbs yesterday and this verse spoke to my heart - and my situation right now.
Anxiety in a man's heart weighs it down, But a good word makes it glad. Proverbs 12:25
I was feeling anxious last night. Eliana had started to spit up (a lot) after some of her feedings. This is unusual for her. I remembered after the second time that it happened that the cardiologist mentioned that this might be a sign that she wasn't tolerating the increased fluids. It had happened only after bottle feedings. Last night at midnight it happened at the bottle feeding and again at the tube feeding. I was starting to feel anxious and also thankful that we had an appointment already scheduled for today. Just reflecting on this verse though reminded me how very much a word of encouragment can lift the weight of anxious thoughts. How cool is it for God to give me this encouragment! I'm also very thankful to have many friends to speak these words to me!
On to today. Eliana had an appointment at 10:40. A time carefully chosen to work around her feeding tube schedule. Two of the younger boys had eye appts - also this morning. Roger took off from work and took the younger boys to their appt. The two older children came with Eliana and I.
First on the agenda was a weight check - 10 pounds 2 ounces!!! Yippee! She is still gaining. This is a 7 ounce increase from last week.
Next we are waiting in the room and then are told that the doctor won't be able to see us for another hour! That really messes up her feeding, but I think it's important to see him. So we wait. I decide that when her feeding time comes that she can take what she will from the bottle and I won't worry about it. We walk around some, sit in the large lobby area, talk and then get the phone call to go back to the exam room. (Don't you love having cell phones?!)
The cardiologist (Dr. C), listens to her heart and says that it is "galloping". Like Dr. L (our ped) told me last week, there is an increase in fluid there too. He ups her meds to try to get that under control. This may cause her to lose some weight. He then tells us that she can probably be kept comfortable for another 2 to 4 weeks. It is just a cycle now - trying to balance her medications, the fluid levels in her heart/lungs and the work of her heart. It's time to look at the calendar and pick a date for her surgery. *sigh* I knew this was coming, but it is still hard to hear and imagine what is before us. We have until mid to late April at the latest.
Roger and I need to sit down with our calendars and do some praying and planning. We need to begin looking at arranging care for our children and support for us while we are in the hospital. Dr. C said he expects Eliana to be in the hospital for at least 10 days and possibly up to a month.
That is a very long time! He did say that since we are comfortable with the feeding tube that this would probably get us home sooner. Even up to a week sooner. That's really good news! I'm hoping that this is a "worst case scenario" and know that it is better to be prepared for a longer stay than a shorter one.
Recently a friend asked what I've done to prepare for surgery. Honestly, not much. I tend not to like to think about it in the concrete. I decided to ask for information on a heart loop that I'm on and I've started reading some about open heart surgery - and it's hard! The pictures are even harder. I know that this is done often and that it isn't an uncommon surgery. I know that the results are usually good. I know that we are at a very good hospital. That doesn't change the fact that this is our first time and that my baby is having very major surgery!
We will be meeting with the surgeon(s) the day before the surgery and will also have the option of meeting with them up to a week in advance. We aren't really sure if we need this meeting or not. It's so hard to know when everything is just so foreign to our experiences.
Please pray for these things:
1. The date - Wisdom in choosing what will be best for Eliana, the rest of our family and our support system. Wisdom in arranging a schedule for all of us while Eliana is in the hospital.
2. Eliana's health - If she gets sick it would delay her surgery. Dr C said he would want her healthy 2 weeks out from being sick. Please pray that our whole family remains healthy. I'm hoping that the worst of this winter is behind us now.
3. Family field trip - We are scheduled to go out of town with friends soon on an extended field trip. This was planned last summer when I expected it to be a piece of cake to travel with an infant. I'm just not sure that Eliana can make the trip. Or even if it would be wise to take her. She is not difficult at all - it is the managing of the feeding pump! The thought of missing out on this time with my family is hard too. Dr C encouraged us to have some good family time before the surgery as it will be difficult on all of us - with a lot of separation to come. I'm not sure if this would be good family time - or just a lot of challenges. Pray for wisdom as we make decisions about this trip.
4. Good communication - That Roger and I would be able to talk about all of the things we need to discuss. That we would make time to do this in the midst of an already very full schedule. Also good communication with our children in addressing their fears and concerns. This will be a challenge for all of us and I want us to be as prepared as we can be heading into the unknown.
A dear friend that has walked this road shared with me that she thought the time before surgery was the hardest part. And I've heard that the day before is a huge struggle. It helps to know that. This is hard. Very hard. I expect that it will get more so and hope and pray that I can learn to give up my anxious thoughts and allow God to carry me and fill me with His peace.
As always I am thankful for your support, love, prayers and encouragment.
With love,
Leslie
PS As an aside, I "let" Eliana pull out her feeding tube today. (Tape was getting loose and needed to be reattached. I didn't reattach it and as she was playing with it, she pulled it out.) Her tape was irritating her face a lot. Dr C gave me some duoderm to put on her face. I decided that I needed to switch sides as her cheek was too irritated to put more adhesive on that side. This side (that we switched to) is just difficult. I'm not sure why. It took me at least 5 tries as I kept hitting the gag reflex and it just felt "stuck'". This is the same side I did when Christopher was helping and it took multiple tries then too. Thankfully it is in. I'm definitely becomind more comfortable with it. I'm up to 7 times now.
Anxiety in a man's heart weighs it down, But a good word makes it glad. Proverbs 12:25
I was feeling anxious last night. Eliana had started to spit up (a lot) after some of her feedings. This is unusual for her. I remembered after the second time that it happened that the cardiologist mentioned that this might be a sign that she wasn't tolerating the increased fluids. It had happened only after bottle feedings. Last night at midnight it happened at the bottle feeding and again at the tube feeding. I was starting to feel anxious and also thankful that we had an appointment already scheduled for today. Just reflecting on this verse though reminded me how very much a word of encouragment can lift the weight of anxious thoughts. How cool is it for God to give me this encouragment! I'm also very thankful to have many friends to speak these words to me!
On to today. Eliana had an appointment at 10:40. A time carefully chosen to work around her feeding tube schedule. Two of the younger boys had eye appts - also this morning. Roger took off from work and took the younger boys to their appt. The two older children came with Eliana and I.
First on the agenda was a weight check - 10 pounds 2 ounces!!! Yippee! She is still gaining. This is a 7 ounce increase from last week.
Next we are waiting in the room and then are told that the doctor won't be able to see us for another hour! That really messes up her feeding, but I think it's important to see him. So we wait. I decide that when her feeding time comes that she can take what she will from the bottle and I won't worry about it. We walk around some, sit in the large lobby area, talk and then get the phone call to go back to the exam room. (Don't you love having cell phones?!)
The cardiologist (Dr. C), listens to her heart and says that it is "galloping". Like Dr. L (our ped) told me last week, there is an increase in fluid there too. He ups her meds to try to get that under control. This may cause her to lose some weight. He then tells us that she can probably be kept comfortable for another 2 to 4 weeks. It is just a cycle now - trying to balance her medications, the fluid levels in her heart/lungs and the work of her heart. It's time to look at the calendar and pick a date for her surgery. *sigh* I knew this was coming, but it is still hard to hear and imagine what is before us. We have until mid to late April at the latest.
Roger and I need to sit down with our calendars and do some praying and planning. We need to begin looking at arranging care for our children and support for us while we are in the hospital. Dr. C said he expects Eliana to be in the hospital for at least 10 days and possibly up to a month.
That is a very long time! He did say that since we are comfortable with the feeding tube that this would probably get us home sooner. Even up to a week sooner. That's really good news! I'm hoping that this is a "worst case scenario" and know that it is better to be prepared for a longer stay than a shorter one.Recently a friend asked what I've done to prepare for surgery. Honestly, not much. I tend not to like to think about it in the concrete. I decided to ask for information on a heart loop that I'm on and I've started reading some about open heart surgery - and it's hard! The pictures are even harder. I know that this is done often and that it isn't an uncommon surgery. I know that the results are usually good. I know that we are at a very good hospital. That doesn't change the fact that this is our first time and that my baby is having very major surgery!
We will be meeting with the surgeon(s) the day before the surgery and will also have the option of meeting with them up to a week in advance. We aren't really sure if we need this meeting or not. It's so hard to know when everything is just so foreign to our experiences.
Please pray for these things:
1. The date - Wisdom in choosing what will be best for Eliana, the rest of our family and our support system. Wisdom in arranging a schedule for all of us while Eliana is in the hospital.
2. Eliana's health - If she gets sick it would delay her surgery. Dr C said he would want her healthy 2 weeks out from being sick. Please pray that our whole family remains healthy. I'm hoping that the worst of this winter is behind us now.
3. Family field trip - We are scheduled to go out of town with friends soon on an extended field trip. This was planned last summer when I expected it to be a piece of cake to travel with an infant. I'm just not sure that Eliana can make the trip. Or even if it would be wise to take her. She is not difficult at all - it is the managing of the feeding pump! The thought of missing out on this time with my family is hard too. Dr C encouraged us to have some good family time before the surgery as it will be difficult on all of us - with a lot of separation to come. I'm not sure if this would be good family time - or just a lot of challenges. Pray for wisdom as we make decisions about this trip.
4. Good communication - That Roger and I would be able to talk about all of the things we need to discuss. That we would make time to do this in the midst of an already very full schedule. Also good communication with our children in addressing their fears and concerns. This will be a challenge for all of us and I want us to be as prepared as we can be heading into the unknown.
A dear friend that has walked this road shared with me that she thought the time before surgery was the hardest part. And I've heard that the day before is a huge struggle. It helps to know that. This is hard. Very hard. I expect that it will get more so and hope and pray that I can learn to give up my anxious thoughts and allow God to carry me and fill me with His peace.
As always I am thankful for your support, love, prayers and encouragment.
With love,
Leslie
PS As an aside, I "let" Eliana pull out her feeding tube today. (Tape was getting loose and needed to be reattached. I didn't reattach it and as she was playing with it, she pulled it out.) Her tape was irritating her face a lot. Dr C gave me some duoderm to put on her face. I decided that I needed to switch sides as her cheek was too irritated to put more adhesive on that side. This side (that we switched to) is just difficult. I'm not sure why. It took me at least 5 tries as I kept hitting the gag reflex and it just felt "stuck'". This is the same side I did when Christopher was helping and it took multiple tries then too. Thankfully it is in. I'm definitely becomind more comfortable with it. I'm up to 7 times now.
Monday, March 12, 2007
This day 14 years ago I held my first child!
Can it really be that long ago? Where has the time gone? When did my baby become a young man - right before my eyes?!!!
I can remember so clearly the joy of having my first child - a son. Christopher's birth was a little scary as he had the cord around his neck cutting off his oxygen. He was whisked away from me and I heard them reading his apgar numbers from across the room. He got some 0s and 1s for a total of 3. I didn't know enough to be scared and our doctor was so calm. He was kept for hours to monitor his breathing and I was most impatient to have him back. Once I held him, I never wanted to let go. I recall during later years a friend ribbing me about how much I hold my babies. I know though that the time is short when they can be held so you must do it then. I never wanted to look back and regret that I didn't hold my babies more. (Besides I LOVE holding my babies!!!)
Christopher, what joy you have brought to my life. What fullness, laughter and happiness have come with being your Mom!!! I never knew that being a mama would be the intense and amazing experience that it has been. I am so very thankful for you - and for all that I've learned because of you and with you. I could not have asked for a more wonderful introduction to motherhood than I received from you!
From an early age you were bright, inquisitive and interesting. You have always been interested in food - both cooking it and eating it! This interest has grown and matured, but still remains prominent. It's been good for me to learn to experiment more with my cooking and with what I'm willing to eat. I remember seeing you cook for hours in your little pretend kitchen at age 2 and now seeing you many years later concocting and creating in my kitchen. I appreciate your efforts in helping all of us with food and meal prep.
Books became a friend early on too. You loved being read to for hours on end. I have fond memories of many of your favorites from those early years. You especially loved hearing stories about "vehicles" (one of your favorite words) and I would often make up stories at night as you were going to sleep about vehicles. I would name them after you and your friends (ex. Christopher the caterpillar) and you loved those special stories. Your love of reading continues today and now you share titles and stories that you have loved with me! I am thankful that you enjoy exploring so many different topics, interests and times through books.
We enjoyed travelling and going places together too. We started a playgroup when you were two so that we'd have friends and field trips to enjoy with them. We did this weekly and have so many rich memories (and lots of photos too). As you got older, the group changed from a playgroup to a homeschool support group. We've been doing this for over 12 years now! We've been blessed to see and experience so many places together. I have also loved our travels around the state, country and world together. I think it has sparked some of your interest in history. I know it has broadened my horizons and experiences greatly.
I have loved learning about things with you - history, our state, cooking and much more. I am thankful that you have interests and passions to explore. You have brought a richness to my life and our family by sharing what you have discovered and what you are interested in exploring.
I love watching you with your littlest sister. Your tenderness and love toward her melt my heart. I love that you love her and see her as a blessing to our family. I am so thankful that you enjoy babies. I remember how you prayed and prayed for another sibling after Rebecca was a toddler. When Joshua joined our family I remember how you would pull up a chair to sit beside him while he slept and just watch him. I loved that your prayers were answered in such a tangible and delightful way.
I love seeing you play and interact with your siblings. Hearing laughter and shared stories just warms my "mama heart". I pray that your relationships with your family would grow stronger and stronger. I want for you not only to be family but also to be friends.
Christopher you have a beautiful heart that I know God has shaped and molded. You have a tenderness and thoughtfulness that is strong and sweet. I pray that God would continue to shape and mold you into the man that He desires you to be. You are showing fruit of His spirit in you and I pray that this would grow and grow!
Christopher you have been my right hand through so many things. I can't imagine life without you. In fact when I think to the future, I find I just can't go there. I know that you are growing up and I just can't bear to think about a time when you won't be here every day.
Christopher, I love you so very much! My heart is so full with love for you! I thank God every day that He has given you to me as my son. You are the one who made me a Mom. What an amazing gift you were 14 years ago and have continued to be every day since!!! I pray for you daily and love you with all of my heart. I pray that you will always know how very deeply you are loved!!!
With much love,
Mommy
I can remember so clearly the joy of having my first child - a son. Christopher's birth was a little scary as he had the cord around his neck cutting off his oxygen. He was whisked away from me and I heard them reading his apgar numbers from across the room. He got some 0s and 1s for a total of 3. I didn't know enough to be scared and our doctor was so calm. He was kept for hours to monitor his breathing and I was most impatient to have him back. Once I held him, I never wanted to let go. I recall during later years a friend ribbing me about how much I hold my babies. I know though that the time is short when they can be held so you must do it then. I never wanted to look back and regret that I didn't hold my babies more. (Besides I LOVE holding my babies!!!)
Christopher, what joy you have brought to my life. What fullness, laughter and happiness have come with being your Mom!!! I never knew that being a mama would be the intense and amazing experience that it has been. I am so very thankful for you - and for all that I've learned because of you and with you. I could not have asked for a more wonderful introduction to motherhood than I received from you!
From an early age you were bright, inquisitive and interesting. You have always been interested in food - both cooking it and eating it! This interest has grown and matured, but still remains prominent. It's been good for me to learn to experiment more with my cooking and with what I'm willing to eat. I remember seeing you cook for hours in your little pretend kitchen at age 2 and now seeing you many years later concocting and creating in my kitchen. I appreciate your efforts in helping all of us with food and meal prep.
Books became a friend early on too. You loved being read to for hours on end. I have fond memories of many of your favorites from those early years. You especially loved hearing stories about "vehicles" (one of your favorite words) and I would often make up stories at night as you were going to sleep about vehicles. I would name them after you and your friends (ex. Christopher the caterpillar) and you loved those special stories. Your love of reading continues today and now you share titles and stories that you have loved with me! I am thankful that you enjoy exploring so many different topics, interests and times through books.
We enjoyed travelling and going places together too. We started a playgroup when you were two so that we'd have friends and field trips to enjoy with them. We did this weekly and have so many rich memories (and lots of photos too). As you got older, the group changed from a playgroup to a homeschool support group. We've been doing this for over 12 years now! We've been blessed to see and experience so many places together. I have also loved our travels around the state, country and world together. I think it has sparked some of your interest in history. I know it has broadened my horizons and experiences greatly.
I have loved learning about things with you - history, our state, cooking and much more. I am thankful that you have interests and passions to explore. You have brought a richness to my life and our family by sharing what you have discovered and what you are interested in exploring.
I love watching you with your littlest sister. Your tenderness and love toward her melt my heart. I love that you love her and see her as a blessing to our family. I am so thankful that you enjoy babies. I remember how you prayed and prayed for another sibling after Rebecca was a toddler. When Joshua joined our family I remember how you would pull up a chair to sit beside him while he slept and just watch him. I loved that your prayers were answered in such a tangible and delightful way.
I love seeing you play and interact with your siblings. Hearing laughter and shared stories just warms my "mama heart". I pray that your relationships with your family would grow stronger and stronger. I want for you not only to be family but also to be friends.
Christopher you have a beautiful heart that I know God has shaped and molded. You have a tenderness and thoughtfulness that is strong and sweet. I pray that God would continue to shape and mold you into the man that He desires you to be. You are showing fruit of His spirit in you and I pray that this would grow and grow!
Christopher you have been my right hand through so many things. I can't imagine life without you. In fact when I think to the future, I find I just can't go there. I know that you are growing up and I just can't bear to think about a time when you won't be here every day.
Christopher, I love you so very much! My heart is so full with love for you! I thank God every day that He has given you to me as my son. You are the one who made me a Mom. What an amazing gift you were 14 years ago and have continued to be every day since!!! I pray for you daily and love you with all of my heart. I pray that you will always know how very deeply you are loved!!!
With much love,
Mommy
Sunday, March 11, 2007
Update on life here ...
I'm up one more on the number of times I've put in the NG tube - total of 6 times now. Eliana pulled it out again on Friday morning while I was holding her. She is quick!
Prayers please for Eliana's feeding. She has spit up large amounts during 2 of the last 4 bottle feedings that she's had. This was one of the signs that the cardiologist told me to look for to see if she wasn't tolerating the increase in food. It's been almost 2 weeks on this new amount so I'm not sure if that would be it now. The pediatrician last week did say that there was an increase in fluids in her heart so perhaps that is contributing? I really don't know.
Please pray for her health. Please pray that if she spits up that she would not aspirate it! That one really scares me as I'm not sure I'd know what to do. I'm not sure if she would know to turn her head if she were laying in her crib. If this only happens with the oral feedings, then at least then she is being held in an upright positiion.
We visit the cardiologist on Tueday. I'll update then as to what we know.
Tomorrow is Christopher's 14th birthday. How did he get to be so old? Where has the time gone? I have loved all of these years with this young man. I have storehouses full of precious memories of time spent with him. He is growing into a wonderful man. I enjoy spending time with him and am so thankful that he is my son!
Prayers please for Eliana's feeding. She has spit up large amounts during 2 of the last 4 bottle feedings that she's had. This was one of the signs that the cardiologist told me to look for to see if she wasn't tolerating the increase in food. It's been almost 2 weeks on this new amount so I'm not sure if that would be it now. The pediatrician last week did say that there was an increase in fluids in her heart so perhaps that is contributing? I really don't know.
Please pray for her health. Please pray that if she spits up that she would not aspirate it! That one really scares me as I'm not sure I'd know what to do. I'm not sure if she would know to turn her head if she were laying in her crib. If this only happens with the oral feedings, then at least then she is being held in an upright positiion.
We visit the cardiologist on Tueday. I'll update then as to what we know.
Tomorrow is Christopher's 14th birthday. How did he get to be so old? Where has the time gone? I have loved all of these years with this young man. I have storehouses full of precious memories of time spent with him. He is growing into a wonderful man. I enjoy spending time with him and am so thankful that he is my son!
Thursday, March 8, 2007
Wholehearted
This is the name chosen by my daughter Rebecca for her business. Let me start at the beginning. Rebecca became interested in beading in the fall and used some of her birthday money to buy supplies in December. She began making bracelets. After Eliana was born, she began looking for ways to help other children. She had been allowed to visit Eliana in the NICU and made two knitted hats to donate there. Then she decided that she wanted to sell bracelets to raise money for other children needing heart surgery.
As she began making more bracelets, it was my job was to try to find somewhere for her to sell them. I was really at a loss as to where that could be and honestly my mind was a little (no really a LOT) distracted to even try to think much on it.
Rebecca went door to door on our street and sold about $72 worth of bracelets that way. Most were the stretchy elastic kind which she sold for about $4-$5.
Last week I read in our church bulletin about a Mom's encouragment night in which Sally Clarkson was speaking. There were other vendors coming and I asked if Rebecca could be a vendor there too. She was so excited to be able to participate.
Now, when Rebecca chose the name of her business, Wholehearted, I knew that it was very similar to the name of Sally Clarkson's business (Wholeheart). I figured that it didn't really matter as we would probably not cross paths. How funny is it that her first event is with Sally (who was very gracious and encouraging about Rebecca's business).
Since we received permission to sell bracelets only a couple of days before the event, Rebecca worked hard to make bracelets and even had help from 2 friends and family too. We made signs with pictures of Rebecca with Eliana and a statement about why she was selling the bracelets.
Here is a picture of my two little girls.
This is what Rebecca shared that we posted on the signs at her table.
Hi, my name is Rebecca and I'm selling bracelets for Wholehearted. It's a business I started after my little sister Eliana was born with two holes in her heart. She is getting a lot of help. I want kids like her to be able to get help too. All of the money from the bracelets goes to the Children's Hospital.
The event occurred last Friday night. Rebecca worked her talbe with one of her friends and raised about $250! She asked me over and over before the event if I thought anyone would buy her bracelets. She was nervous about it. What a sweet thing to see people respond to her offerings.
Rebecca is on the right and is with her friend Hannah.
A couple of days later she received some beads in the mail. A little girl had received a bracelet that her mom bought and decided to give Rebecca some of her beads. She also wrote a precious note to her encouraging her and saying she was praying for Eliana. That was so sweet!
When I went to our pediatrician on Tues for Eliana's weight check, I told our ped what Rebecca was doing. She promptly pulled out some money and ordered one of Rebecca's bracelets. She told one of her colleagues about it and she had the same response.
Some of the gals that work with my husband also expressed interest in Rebecca's bracelets. She worked hard making more and then on Wed morning went to work with her Daddy. He sent me a short email early in the day to let me know that sales were going well. I have tears again. By the time she is home for lunch I learn that she has practically "sold out" and has some orders for more bracelets. She has also sold another $300 worth of bracelets! And this is not a large office. What a loving response to my daughters - both of them.
Rebecca is currently working to fulfill some special orders. She has also been invited to sell bracelets at a special needs conference next month. (Thank you Tami!) She has also received donations for her business. I'm not sure where we'll go from here. I want to encourage and support her - but not overwhelm her. I think that this is a good opportunity for her to become more comfortable with others. She tends to be shy though always willing to jump in and help someone out. Thus far she has raised over $700!
The response to her efforts have overwhelmed me. I never imagined that she would be able to do so much!!! I think she is learning a lot from this effort - and I am too. She is learning about hard work, donating your time and efforts to help others, generousity of others and compassion. She has always had a very tender heart and a willingness to give and give and give. It shows through so clearly in this project.
I am learning about the difference that a little girl can make! I am learning that it's good to dream big. I am learning that God can work in a big way through our giftings if we will let Him. I'm learning that when people respond - it is a blessing to my heart. It lets me know that people really do care. It's a sweet reminder of the love of others and how sharing our love can bless so very many people.
I'm so proud of my little girl. She is a talented, compassionate person - a "world-changer " as one of my friends put it. I can learn a lot from her example! I hope I can learn to be more like her.
Thankful to be the Mama of some very special kids!
Leslie
As she began making more bracelets, it was my job was to try to find somewhere for her to sell them. I was really at a loss as to where that could be and honestly my mind was a little (no really a LOT) distracted to even try to think much on it.
Rebecca went door to door on our street and sold about $72 worth of bracelets that way. Most were the stretchy elastic kind which she sold for about $4-$5.
Last week I read in our church bulletin about a Mom's encouragment night in which Sally Clarkson was speaking. There were other vendors coming and I asked if Rebecca could be a vendor there too. She was so excited to be able to participate.
Now, when Rebecca chose the name of her business, Wholehearted, I knew that it was very similar to the name of Sally Clarkson's business (Wholeheart). I figured that it didn't really matter as we would probably not cross paths. How funny is it that her first event is with Sally (who was very gracious and encouraging about Rebecca's business).
Since we received permission to sell bracelets only a couple of days before the event, Rebecca worked hard to make bracelets and even had help from 2 friends and family too. We made signs with pictures of Rebecca with Eliana and a statement about why she was selling the bracelets.
Here is a picture of my two little girls.
This is what Rebecca shared that we posted on the signs at her table.
Hi, my name is Rebecca and I'm selling bracelets for Wholehearted. It's a business I started after my little sister Eliana was born with two holes in her heart. She is getting a lot of help. I want kids like her to be able to get help too. All of the money from the bracelets goes to the Children's Hospital.
The event occurred last Friday night. Rebecca worked her talbe with one of her friends and raised about $250! She asked me over and over before the event if I thought anyone would buy her bracelets. She was nervous about it. What a sweet thing to see people respond to her offerings.
Rebecca is on the right and is with her friend Hannah. A couple of days later she received some beads in the mail. A little girl had received a bracelet that her mom bought and decided to give Rebecca some of her beads. She also wrote a precious note to her encouraging her and saying she was praying for Eliana. That was so sweet!
When I went to our pediatrician on Tues for Eliana's weight check, I told our ped what Rebecca was doing. She promptly pulled out some money and ordered one of Rebecca's bracelets. She told one of her colleagues about it and she had the same response.
Some of the gals that work with my husband also expressed interest in Rebecca's bracelets. She worked hard making more and then on Wed morning went to work with her Daddy. He sent me a short email early in the day to let me know that sales were going well. I have tears again. By the time she is home for lunch I learn that she has practically "sold out" and has some orders for more bracelets. She has also sold another $300 worth of bracelets! And this is not a large office. What a loving response to my daughters - both of them.
Rebecca is currently working to fulfill some special orders. She has also been invited to sell bracelets at a special needs conference next month. (Thank you Tami!) She has also received donations for her business. I'm not sure where we'll go from here. I want to encourage and support her - but not overwhelm her. I think that this is a good opportunity for her to become more comfortable with others. She tends to be shy though always willing to jump in and help someone out. Thus far she has raised over $700!
The response to her efforts have overwhelmed me. I never imagined that she would be able to do so much!!! I think she is learning a lot from this effort - and I am too. She is learning about hard work, donating your time and efforts to help others, generousity of others and compassion. She has always had a very tender heart and a willingness to give and give and give. It shows through so clearly in this project.
I am learning about the difference that a little girl can make! I am learning that it's good to dream big. I am learning that God can work in a big way through our giftings if we will let Him. I'm learning that when people respond - it is a blessing to my heart. It lets me know that people really do care. It's a sweet reminder of the love of others and how sharing our love can bless so very many people.
I'm so proud of my little girl. She is a talented, compassionate person - a "world-changer " as one of my friends put it. I can learn a lot from her example! I hope I can learn to be more like her.
Thankful to be the Mama of some very special kids!
Leslie
Rising to the Challenge
Well, one of my numbers is wrong in the post below. Change the 4 to a 5 on number of times I've put in the NG tube.
Eliana pulled it out last during her feeding - again! I knew it was getting close to time to replace her tape, but wanted to wait as long as possible. I obviously waited too long. I was waiting because the tape peels off of her face over time. If I can wait for most of it to peel, then it doesn't hurt as much as when you have to just pull it off.
Eliana was eating - sitting my lap - and pulled out her tube. I looked away from her for just a moment and it was out. She is quick!
This was the 9pm feeding. I decided to wait until close to midnight to put it back in. It needs to be at least 2 hour after a feeding so as not to upset her stomach.
Roger went to bed - he was really exhausted. I asked Christopher (13yo) if he would help. He came to my room at midnight without even being asked to help out. This is the same son that wanted no part of helping initially (he said he wasn't comfortable doing it) and I'm proud of him for stepping up to the challenge.
Eliana was asleep when we started. I kind of hoped she could sleep through it, but who am I kidding?! She was having a tube stuck down her nose!
I decided to switch sides to help alleviate some of the skin irritation from the tape. The first try caused her wake up and cry. We tried soothing her with her pacifier. I tried again and hit her "gag reflex". I then began to wonder if I could only do one side. Sounds silly I know. Christopher even commented that maybe we needed to wake up Dad. (Never mind that he was asleep beside us, all the lights were on and Eliana was crying. He slept through it all!)
We did finally get it in. I'm thankful for one more successful insertion, thankful for the prayers of friends and thankful for my son being willing to go beyond his comfort to help his mom and sister.
More later if I can. I have pictures and stories from Rebecca's bracelet sales that I'll try to get up soon!
Blessings,
Leslie
Eliana pulled it out last during her feeding - again! I knew it was getting close to time to replace her tape, but wanted to wait as long as possible. I obviously waited too long. I was waiting because the tape peels off of her face over time. If I can wait for most of it to peel, then it doesn't hurt as much as when you have to just pull it off.
Eliana was eating - sitting my lap - and pulled out her tube. I looked away from her for just a moment and it was out. She is quick!
This was the 9pm feeding. I decided to wait until close to midnight to put it back in. It needs to be at least 2 hour after a feeding so as not to upset her stomach.
Roger went to bed - he was really exhausted. I asked Christopher (13yo) if he would help. He came to my room at midnight without even being asked to help out. This is the same son that wanted no part of helping initially (he said he wasn't comfortable doing it) and I'm proud of him for stepping up to the challenge.
Eliana was asleep when we started. I kind of hoped she could sleep through it, but who am I kidding?! She was having a tube stuck down her nose!
I decided to switch sides to help alleviate some of the skin irritation from the tape. The first try caused her wake up and cry. We tried soothing her with her pacifier. I tried again and hit her "gag reflex". I then began to wonder if I could only do one side. Sounds silly I know. Christopher even commented that maybe we needed to wake up Dad. (Never mind that he was asleep beside us, all the lights were on and Eliana was crying. He slept through it all!)We did finally get it in. I'm thankful for one more successful insertion, thankful for the prayers of friends and thankful for my son being willing to go beyond his comfort to help his mom and sister.
More later if I can. I have pictures and stories from Rebecca's bracelet sales that I'll try to get up soon!
Blessings,
Leslie
Tuesday, March 6, 2007
Numbers ... it's all about numbers some days
I've been meaning to write for a couple of days and just haven't found the time. We visited the pediatrician today and I wanted to update things here. I thought I'd write about some of the numbers in our lives. I don't think I've ever been so focused on numbers before. It's amazing some of the things that we are counting. I'm not going to include hours of sleep per day as that is just too few!
Countless - number of prayers being lifted for our little girl. Also the friends, family and even strangers (turned friends) that have reached out to us. We have been so blessed by the love we have received from so many people!
85 - number of ml per feeding that Eliana gets. We try to start with a bottle/oral feeding and then finish with the rest in the feeding tube. This is up from 75ml a week ago.
15 - number of hours Eliana has slept through during the night! (Of course we are still up every 3 hours for a feeding and then again an hour later to end the feeding.)
11 - number of weeks since Eliana's birth.
9 - number of ounces she has gained in the last week!!! She is up to 9 pounds and 11 ounces!!!
8 - number of feedings per day. Every three hours at 3, 6, 9 and 12.
5 - number of sibling who love kissing on and playing with their little sister.
4 - number of hours spent pumping daily. Though this is declining. My milk supply is waning and I don't even want to post that number.
4 - number of weeks so far with the feeding tube.
4 - number of times I've put in Eliana's feeding tube. Roger has also done it once.
3 - number of pediatricians in her exam room today when trying to figure out her care over the next couple of weeks. (Some are going to be out of town and they are working hard to make sure we are covered. Really great care!!!) She is doing well, though her heart murmer is stronger and there is more fluid there. We expect an increase in meds next week to help with this.
2 - number of hours between feedings (end of one until the beginning of the next).
2 - number of medicines Eliana is currently taking. One helps her heart beat more strongly and the other is a diuretic.
1 - number of doctor appointments weekly. This is a nice change from the first month when we would sometimes have a couple each week. This is a huge change for us though as we are used to going very infrequently with our other children.
Unknown - time until her surgery. We are currently looking at late March to April. She is doing well enough that our cardiologist thinks we'll be able to "plan" her surgery instead of having to do an emergency one based on her decline.
1 - incredibly cute little girl! (Thanks for the bows Kendall!!!)
That's all for now! I'll update more asap on Rebecca's bracelet sales.
My computer time and typing is a little down these days. I'm having some troubles with swelling in one finger which makes typing difficult. Will share more on this later. Can't take anything as I'm concerned about it's effect on Eliana.
Thank you for your continued prayers for our family. We are delighting in the precious smiles of our little girl. Its sweet sunshine to our spirits.
Blessings,
Leslie
Countless - number of prayers being lifted for our little girl. Also the friends, family and even strangers (turned friends) that have reached out to us. We have been so blessed by the love we have received from so many people!
85 - number of ml per feeding that Eliana gets. We try to start with a bottle/oral feeding and then finish with the rest in the feeding tube. This is up from 75ml a week ago.
15 - number of hours Eliana has slept through during the night! (Of course we are still up every 3 hours for a feeding and then again an hour later to end the feeding.)
11 - number of weeks since Eliana's birth.
9 - number of ounces she has gained in the last week!!! She is up to 9 pounds and 11 ounces!!!
8 - number of feedings per day. Every three hours at 3, 6, 9 and 12.
5 - number of sibling who love kissing on and playing with their little sister.
4 - number of hours spent pumping daily. Though this is declining. My milk supply is waning and I don't even want to post that number.
4 - number of weeks so far with the feeding tube.
4 - number of times I've put in Eliana's feeding tube. Roger has also done it once.
3 - number of pediatricians in her exam room today when trying to figure out her care over the next couple of weeks. (Some are going to be out of town and they are working hard to make sure we are covered. Really great care!!!) She is doing well, though her heart murmer is stronger and there is more fluid there. We expect an increase in meds next week to help with this.
2 - number of hours between feedings (end of one until the beginning of the next).
2 - number of medicines Eliana is currently taking. One helps her heart beat more strongly and the other is a diuretic.
1 - number of doctor appointments weekly. This is a nice change from the first month when we would sometimes have a couple each week. This is a huge change for us though as we are used to going very infrequently with our other children.
Unknown - time until her surgery. We are currently looking at late March to April. She is doing well enough that our cardiologist thinks we'll be able to "plan" her surgery instead of having to do an emergency one based on her decline.
1 - incredibly cute little girl! (Thanks for the bows Kendall!!!)
That's all for now! I'll update more asap on Rebecca's bracelet sales.
My computer time and typing is a little down these days. I'm having some troubles with swelling in one finger which makes typing difficult. Will share more on this later. Can't take anything as I'm concerned about it's effect on Eliana.
Thank you for your continued prayers for our family. We are delighting in the precious smiles of our little girl. Its sweet sunshine to our spirits.
Blessings,
Leslie
Thursday, March 1, 2007
Blessings and burdens
Well, this has been a day of both. I hope I can keep my focus on the positive. I've been trying - to keep my mind on the pure, good, lovely and upright. This can be hard to do when you are feeling overwhelmed, tired, sad and scared.
After spending much of the morning in tears, I was blessed to have notes and emails from sweet friends, a visit from 2 dear friends and several phone calls as well. I am richly blessed in the friends department. For that I am so very very thankful!!! What a amazing thing it is to receive encouragment from another. I've always known that it was a good thing, but I have never been in a place where I needed it so very much. I don't like feeling needy - or that I'm a burden. I have been repeatedly blessed by the love given to me by others. It's a precious thing to be on the receiving end of others being the hands of Christ to me and my family. Thank you dear friends!!!
A surprise gift came in the mail today - a case of the liquid formula that we use! I have no idea where it came from or how we could have gotten it. It will last us for a week! That is so nice. Eliana's feeding budget is a little high at the moment. We are using liquid formula as the powdered clogs the tubing. We must add powdered formula to both the liquid formula and the pumped milk in order to increase the calorie content. This little bit of powder has not been problematic. Anyway, we are buying large amounts of formula (my pumping is not so productive) and this was a sweet and unexpected blessing.
Rebecca will be selling some of her bracelets at an event at our church tomorrow night. Sally Clarkson will be speaking to moms and Rebecca will be one of the vendors. She is excited and a little nervous. She keeps asking if I think anyone will buy one of her bracelets. She is planning to make a sign tomorrow to let people know why she is selling the bracelets (her sweet sister Eliana prompted this outreach) and where the money will be going (all proceeds will benefit children needing heart surgery). If you think of it, say a little prayer for my sweet girl. She is doing a good thing. She has been working very hard to make bracelets this week.
That's all for now. It's 3am and time to go feed Eliana.
Love to you all,
Leslie
After spending much of the morning in tears, I was blessed to have notes and emails from sweet friends, a visit from 2 dear friends and several phone calls as well. I am richly blessed in the friends department. For that I am so very very thankful!!! What a amazing thing it is to receive encouragment from another. I've always known that it was a good thing, but I have never been in a place where I needed it so very much. I don't like feeling needy - or that I'm a burden. I have been repeatedly blessed by the love given to me by others. It's a precious thing to be on the receiving end of others being the hands of Christ to me and my family. Thank you dear friends!!!
A surprise gift came in the mail today - a case of the liquid formula that we use! I have no idea where it came from or how we could have gotten it. It will last us for a week! That is so nice. Eliana's feeding budget is a little high at the moment. We are using liquid formula as the powdered clogs the tubing. We must add powdered formula to both the liquid formula and the pumped milk in order to increase the calorie content. This little bit of powder has not been problematic. Anyway, we are buying large amounts of formula (my pumping is not so productive) and this was a sweet and unexpected blessing.
Rebecca will be selling some of her bracelets at an event at our church tomorrow night. Sally Clarkson will be speaking to moms and Rebecca will be one of the vendors. She is excited and a little nervous. She keeps asking if I think anyone will buy one of her bracelets. She is planning to make a sign tomorrow to let people know why she is selling the bracelets (her sweet sister Eliana prompted this outreach) and where the money will be going (all proceeds will benefit children needing heart surgery). If you think of it, say a little prayer for my sweet girl. She is doing a good thing. She has been working very hard to make bracelets this week.
That's all for now. It's 3am and time to go feed Eliana.
Love to you all,
Leslie
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