***After typing I am back to the beginning thinking I should post a warning. Today has been a hard day for me emotionally. This isn't an upbeat post at all. Know before you read so if you don't want to hear it, you don't have to go any further. It's hard sometimes to know what to share here. I want to be honest. I think that sharing the struggles has helped people to really be able to pray for us - and that has made a HUGE impact on our family!!! I also want to share the joys. I love Eliana so very much! I think she is beautiful and am so thankful for her! I guess I just want this to be real - the good, the bad and the ugly. I'm so thankful that I'm not walking this journey alone. I know that our Father has carried me a lot and I'm still learning what it means to just relax in His arms day to day.
I keep wondering if I'm supposed to have "moved on" by now? Heart surgery is complete - and a success for which I'm soooo very thankful. All of these months in crisis. It was hard. Very, very hard. I have never been through such a dark, scary and lonely time in my life. It was often more than overwhelming. I know that without the support of God, my family and my friends, I wouldn't have made it through. All of the many many prayers lifted for our family. It still touches my heart tremendously to know how many people have loved on us - through prayers, acts of service and words of encouragment.
I think that for so long I was waiting for surgery to be completed. Then ... I could do things again. But, here it is and it just isn't what I expected. I'm so very glad to be on this side of surgery. It is MUCH better on this side. Much! Though it isn't easy yet. I know it hasn't been long. She is still recovering. She still has a feeding tube. I think that one of the hard parts is that even though her heart is repaired, things aren't just "fixed". There is still a lot to learn ... a lot to handle ... a lot to deal with. Too much for me. I'm glad I'm not walking this road alone.
For the last 4.5 months, I've been dealing with cardiac issues. It really has been so HUGE. I haven't had to face Down syndrome so much. I haven't read that much or even looked into it as I just needed to deal with her heart. Well, now I need to start figuring out new things. Part of me just wants a break! I just wanted a little time to relax. I'm not going to get it though. Or maybe I need to find a new way to get it.
In the early weeks after she was born, I often reflected back on what I called my "last day of normal". It was Dec 14th and the children and I were on a field trip to an art museum to see the monet exhibit. I love field trips and we typically go on one a week. After the field trip, we went with a lot of our friends to a nearby park to picnic, play and have fun! I remember being worried about labor and having a friend tell that since I wasn't "ready" that I probably wouldn't have the baby any time soon. Ha ha! I remember someone commenting on how well I looked pregnant. (The last months are always better for me.) I remember it being a full, fun and memorable day. Little did I know that the next day would be the start of something life-changing. I really wasn't expecting Eliana to start making her entrance the following day. (For those that didn't know, I woke up at 5am sick. I continued to be sick - very sick - through the day. I finally called Roger to come home. I went to my OB who admitted me to the hospital. Very dehydrated and contracting. Not a fun way to start labor.)
Since that time I feel like I've aged a million years. I often think I look it too. I've also cried most days - and on some I've cried buckets and buckets of tears. I've never been one to cry easily and I wonder if I'll get to a point where I don't cry so often or so easily.
Today it was dealing with feeding - and trying to figure so many things out. What is best for my sweet girl? I really want to do what is best for her. i wish that there was someone or some source with the answers. Maybe there is, but I don't know where to find it. Little things that if not handled correctly (feeding issues) can have much bigger consequences for Eliana.
Also dealing with my sweet friend Catherine moving. She showed their house yesterday for the first time. Oh, on some days we can just pretend or not think about what is coming. Today wasn't one of those days. We want to enjoy the time we have left of living beside each other, but some days it is just sad. This isn't the way we thought things would turn out. We built houses beside each other after being best friends for 10 years. What a sweet privilege that has been for the last 7 years. We thought we'd grow old living beside each other. We didn't think they would move. Especially when Eliana was born, the timing just seemed so wrong. I really don't understand God's plan in all of this.
Life is hard. There is so much pain. So much heartache. Is this part of what makes us long for heaven? Life is so hard sometimes. God is good. When the "hard" part is overwhelming, I need to focus on the goodness of God. He never changes. He is love, truth and grace. We are each loved with boundless love by the creator of the universe. That is amazing!
With love,
Leslie
Thursday, May 10, 2007
Wednesday, May 9, 2007
She Laughed!
Oh what fun we had with Eliana tonight! She has tried to laugh - and done maybe a small chuckle a couple of times - but tonight she laughed! Over and over. She started it as I was holding her and looking at her. (Not sure what she found so funny!) She laughed and then I laughed back. She repeated. We did this over and over until my cheeks were starting to get sore. (Yes, I need to laugh more!) It was so much fun. What sweet sounds to my ears.
We met with a feeding therapist today. She was able to get her to eat the whole bottle! I think it helped that it had been 4 hours since her last feeding. I was not able to replicate this again today. The therapist thought she looked good - and that we would be able to get her off the feeding tube fairly quickly. She wants to talk with Eliana's pediatrician to make a plan for her. All of this will be run by her cardiologist on Monday. Some of the things to figure out include how much fluid she needs per day (something important to consider as she is a cardiac baby) in addition to how many calories. She is wanting to let hunger drive her in hopes that she will learn to eat for this reason - instead of letting the clock dictate when she eats.
I do want to get her off the tube. I think it will be a tough transition for her as she has pretty much not had hunger-driven feedings. I know that it will work out though - it just may be a challenge getting there. ;-) Currently she eats maybe 6 oz per day - that's about 1/4 of her total intake. Sometimes she is sleepy, others she just won't eat. Lately she has started blowing bubbles which while cute, really doesn't help the food to go in!
Some of the options she talked about are things I'm not sure I'm comfortable with (because it is just counter to what I've done with my other children) and will want to do more research before agreeing to anything. (Things like adding things - cereal or corn syrup - to her bottle feedings and enlarging the hole in the bottle.) It's hard to know what is best. I want to trust others to tell me, but I know that sometimes I need to do my research too.
It's late and I'm heading to bed. Morning always comes faster than I want it too. Just wanted to share our news. Oh, and one last thing. The last stitches from Eliana's surgery fell out on Sat. She is healing so very nicely.
Sorry this is short.
Love,
Leslie
We met with a feeding therapist today. She was able to get her to eat the whole bottle! I think it helped that it had been 4 hours since her last feeding. I was not able to replicate this again today. The therapist thought she looked good - and that we would be able to get her off the feeding tube fairly quickly. She wants to talk with Eliana's pediatrician to make a plan for her. All of this will be run by her cardiologist on Monday. Some of the things to figure out include how much fluid she needs per day (something important to consider as she is a cardiac baby) in addition to how many calories. She is wanting to let hunger drive her in hopes that she will learn to eat for this reason - instead of letting the clock dictate when she eats.
I do want to get her off the tube. I think it will be a tough transition for her as she has pretty much not had hunger-driven feedings. I know that it will work out though - it just may be a challenge getting there. ;-) Currently she eats maybe 6 oz per day - that's about 1/4 of her total intake. Sometimes she is sleepy, others she just won't eat. Lately she has started blowing bubbles which while cute, really doesn't help the food to go in!
Some of the options she talked about are things I'm not sure I'm comfortable with (because it is just counter to what I've done with my other children) and will want to do more research before agreeing to anything. (Things like adding things - cereal or corn syrup - to her bottle feedings and enlarging the hole in the bottle.) It's hard to know what is best. I want to trust others to tell me, but I know that sometimes I need to do my research too.
It's late and I'm heading to bed. Morning always comes faster than I want it too. Just wanted to share our news. Oh, and one last thing. The last stitches from Eliana's surgery fell out on Sat. She is healing so very nicely.
Sorry this is short.
Love,
Leslie
Monday, May 7, 2007
Feedings
So much of our day revolves around feeding ... still. I know that is pretty normal with a baby to spend a lot of time feeding - but this is sooooo very different from what I've experienced in the past. Nursing a baby is so portable, convenient and easy. Feeding with a feeding pump is none of those things. I am thankful though to have the option as it was very neccessary for Eliana's survival.
We are still feeding Eliana on the same schedule we've been on for months - 3, 6, 9 and 12. It's the hospital schedule that we put her on in early February when she got the feeding tube. It's been a little over 3 months now. When we first talked about getting a feeding tube, we talked it over with the doctors. We thought we'd be getting a "G-tube" (one that goes straight into the stomach and requires surgery to place). When we saw her cardiologist, he opted for an NG tube (it goes through the nose, down the esophagus and into the stomach) as he didn't think she had time for the other. He said she would need 4 to 6 weeks to heal from that surgery before undergoing her heart surgery and he didn't think we had that much time. Given this information we thought that the feeding tube was going to be very short term thing - a couple of weeks - up to 4 at the longest.
Eliana did well on the feeding tube and the meds though. (She had really crashed quickly when she went into heart failure and they weren't sure how well she would respond.) Well enough that her surgery was postponed for a couple of months! This allowed her time to grow and get stronger before her surgery. During the time of waiting we still fed by bottle or nursing as much as possible (basically whenever she was awake). Once she was in heart failure though she just didn't have the energy to do much eating. She did well to eat 4 ounces in a day (out of the 24 she was consuming). Some days more and some days much less.
Since her surgery she is awake much more - though not eating a whole lot more. There are times when she is hungry, but seems to be having a hard time swallowing. Several people have mentioned that she may be having trouble due to having been intubated during her surgery (and for awhile afterwards). I guess I didn't realize that the effects of this and the struggles could last so long afterwards.
Since she takes some of her feedings while she is asleep, we have her crib mattress on an incline. We've also made a little "nest" around her to keep her from sliding down and around.
Note the stethoscope near her right foot. This is used prior to each tube feeding to insure that the tube is still placed correctly. Thankfully we have not had one move. I use a syringe to inject air into the tube and you can hear a "whoosh" noise in her stomach as the air enters. Near the top of her crib above her head you can see the red port of the feeding tube which attaches to the green port on the end of her NG tube. To her left is another syringe (it's hard to see). This one holds water and is used to flush the tube after she eats so that formula isn't sitting in her tube. What you can't see is the feeding pump. It is on a tall pole near the head of her crib.
Another change is that she is also pulling out her tube a lot more! She is averaging about every other day. Today was #21 for me putting it back in. (She's actually pulled it out one additional time that Karen put it back in.) To think I thought I could get by with never having to do this myself. (Not so unrealistic when we thought it was just 2 weeks until surgery.) I'm not sure if the frequent placement of this is hurting her throat either. I know that it is usually very hard for her to eat from the bottle just after she has had her tube reinserted.
She is still quick when she gets it out. I don't always see it coming. Sometimes I walk up to the crib and notice that something isn't quite right. Sometimes it takes me a minute to realize what she has done. Usually the evidence is pretty close at hand - and typically in her hand!
Just today she pulled it out just a little bit and I was able to put it back down - though not for long. She grabs the end with the "port" that attaches to the feeding pump and grips it tightly - and then just pulls all of the tape off of her face. The tape does still irritate her sweet skin. I'm using duoderm (and gentle adhesive type bandage under the tape to help protect her skin, but this ultimately seems to make it not stay down as well.
It is fun to see her sweet little face without the tape. You can see her cheek is a little red and irritated where the tape was located. (On her left cheek.)
We have been approved to see a feeding therapist. She called tonight and I was very excited to set up a meeting with her. I think she was happy to hear that I was excited to have her coming to help. She will be here on Wed morning. She wants to see how Eliana's oral motor skills are at this point. If she has good skills and enough weight, she may look at discontinuing the tube so that hunger can drive Eliana's feedings. She also said that this would make for a hard couple of days for us.
Eliana does sometimes cry in hunger. Sometimes she is able to eat then - and others she just isn't! Usually at these times she just cries and cries. I'm not really sure what is going on then. There are times when I start a feed with the tube just to see if it will settle her and get something in her stomach. I then try the bottle (and usually finish with the tube). She has a lot to learn - or relearn - about eating.
Please pray for Eliana's feeding. Pray for wisdom for the therapist in making recommendations and changes for Eliana. Please pray that we would know how to best help her to learn to eat on her own. I look forward to the day when we don't have to have a tube any longer! I know it will come and I just need to be patient. (I'm getting a LOT of lessons in that area!)
One note of encouragment today came when I was talking with an OT (occupational therapist) about doing an evaluation of Eliana. He works with the Early Intervention. When I mentioned we had started seeing a PT and were hoping to see the feeding therapist this week, he asked who we were seeing. When I told him, his comment was that we were seeing some of the best.
As usual, it's late and I should go to sleep. If you've hung in there this long ... bless you!
Love
Leslie
We are still feeding Eliana on the same schedule we've been on for months - 3, 6, 9 and 12. It's the hospital schedule that we put her on in early February when she got the feeding tube. It's been a little over 3 months now. When we first talked about getting a feeding tube, we talked it over with the doctors. We thought we'd be getting a "G-tube" (one that goes straight into the stomach and requires surgery to place). When we saw her cardiologist, he opted for an NG tube (it goes through the nose, down the esophagus and into the stomach) as he didn't think she had time for the other. He said she would need 4 to 6 weeks to heal from that surgery before undergoing her heart surgery and he didn't think we had that much time. Given this information we thought that the feeding tube was going to be very short term thing - a couple of weeks - up to 4 at the longest.
Eliana did well on the feeding tube and the meds though. (She had really crashed quickly when she went into heart failure and they weren't sure how well she would respond.) Well enough that her surgery was postponed for a couple of months! This allowed her time to grow and get stronger before her surgery. During the time of waiting we still fed by bottle or nursing as much as possible (basically whenever she was awake). Once she was in heart failure though she just didn't have the energy to do much eating. She did well to eat 4 ounces in a day (out of the 24 she was consuming). Some days more and some days much less.
Since her surgery she is awake much more - though not eating a whole lot more. There are times when she is hungry, but seems to be having a hard time swallowing. Several people have mentioned that she may be having trouble due to having been intubated during her surgery (and for awhile afterwards). I guess I didn't realize that the effects of this and the struggles could last so long afterwards.
Since she takes some of her feedings while she is asleep, we have her crib mattress on an incline. We've also made a little "nest" around her to keep her from sliding down and around.
Note the stethoscope near her right foot. This is used prior to each tube feeding to insure that the tube is still placed correctly. Thankfully we have not had one move. I use a syringe to inject air into the tube and you can hear a "whoosh" noise in her stomach as the air enters. Near the top of her crib above her head you can see the red port of the feeding tube which attaches to the green port on the end of her NG tube. To her left is another syringe (it's hard to see). This one holds water and is used to flush the tube after she eats so that formula isn't sitting in her tube. What you can't see is the feeding pump. It is on a tall pole near the head of her crib.
Another change is that she is also pulling out her tube a lot more! She is averaging about every other day. Today was #21 for me putting it back in. (She's actually pulled it out one additional time that Karen put it back in.) To think I thought I could get by with never having to do this myself. (Not so unrealistic when we thought it was just 2 weeks until surgery.) I'm not sure if the frequent placement of this is hurting her throat either. I know that it is usually very hard for her to eat from the bottle just after she has had her tube reinserted.
She is still quick when she gets it out. I don't always see it coming. Sometimes I walk up to the crib and notice that something isn't quite right. Sometimes it takes me a minute to realize what she has done. Usually the evidence is pretty close at hand - and typically in her hand!
Just today she pulled it out just a little bit and I was able to put it back down - though not for long. She grabs the end with the "port" that attaches to the feeding pump and grips it tightly - and then just pulls all of the tape off of her face. The tape does still irritate her sweet skin. I'm using duoderm (and gentle adhesive type bandage under the tape to help protect her skin, but this ultimately seems to make it not stay down as well.
It is fun to see her sweet little face without the tape. You can see her cheek is a little red and irritated where the tape was located. (On her left cheek.)
We have been approved to see a feeding therapist. She called tonight and I was very excited to set up a meeting with her. I think she was happy to hear that I was excited to have her coming to help. She will be here on Wed morning. She wants to see how Eliana's oral motor skills are at this point. If she has good skills and enough weight, she may look at discontinuing the tube so that hunger can drive Eliana's feedings. She also said that this would make for a hard couple of days for us.
Eliana does sometimes cry in hunger. Sometimes she is able to eat then - and others she just isn't! Usually at these times she just cries and cries. I'm not really sure what is going on then. There are times when I start a feed with the tube just to see if it will settle her and get something in her stomach. I then try the bottle (and usually finish with the tube). She has a lot to learn - or relearn - about eating.
Please pray for Eliana's feeding. Pray for wisdom for the therapist in making recommendations and changes for Eliana. Please pray that we would know how to best help her to learn to eat on her own. I look forward to the day when we don't have to have a tube any longer! I know it will come and I just need to be patient. (I'm getting a LOT of lessons in that area!)
One note of encouragment today came when I was talking with an OT (occupational therapist) about doing an evaluation of Eliana. He works with the Early Intervention. When I mentioned we had started seeing a PT and were hoping to see the feeding therapist this week, he asked who we were seeing. When I told him, his comment was that we were seeing some of the best.
As usual, it's late and I should go to sleep. If you've hung in there this long ... bless you!
Love
Leslie
Saturday, May 5, 2007
More on my "Real Girl"
I know many of you read the entry I wrote for my daughter for a contest that was sponsored by American Girl. (See here if you haven't read it already. )
http://www.homeschoolblogger.com/LeslieNelsen/308596/
Well, the contest rules stated that winners would be notified by May 1 and we haven't heard anything. I had shared the piece I wrote with Rebecca. She was hopeful that she might win. So was I! When May 1st came she was disappointed and feeling like the work she had done was not "good enough".
It was a good opportunity for us to talk about who we are to please and where we are to look for approval. One of my friends uses the phrase "an audience of one" in talking about who we are living for. Rebecca and I talked about how all of our efforts are to bring glory to God. He is the one that we are to seek to please - not other people. (A hard, hard thing to learn. I know I am far from mastering that one!) I also shared with her that people will always let you down or not act in ways that you want or expect. It is not a reflection of your efforts or worth or even their love and care for you - but just a fact that we are human, sinful, not capable of acting in love all of the time. God alone determines our worth - and He has told us that we are precious to Him!
The following day she told me that she had been thinking more about the contest and had a new perspective. She said it was really great that there are so many girls (over 12,000 entered in the contest!) that are doing things to help other people. That's my girl!
Rebecca has continued to work hard on her bracelet sales. She went to campus with her Dad last Wednesday. She sold bracelets in a couple of venues and almost sold ALL that she had! She raised over $800 in ONE day! This is her biggest day yet! Check out the new total in the sidebar!
Almost $4000!!!
She still has some orders to fill and then I'm not sure where we'll go from here. We also have some friends in other states that are interested in helping sell some of her bracelets, so maybe that will be our next opportunity - we'll see. I'll keep you updated as best I can.
Thanks for checking in!
Love,
Leslie
http://www.homeschoolblogger.com/LeslieNelsen/308596/
Well, the contest rules stated that winners would be notified by May 1 and we haven't heard anything. I had shared the piece I wrote with Rebecca. She was hopeful that she might win. So was I! When May 1st came she was disappointed and feeling like the work she had done was not "good enough".
It was a good opportunity for us to talk about who we are to please and where we are to look for approval. One of my friends uses the phrase "an audience of one" in talking about who we are living for. Rebecca and I talked about how all of our efforts are to bring glory to God. He is the one that we are to seek to please - not other people. (A hard, hard thing to learn. I know I am far from mastering that one!) I also shared with her that people will always let you down or not act in ways that you want or expect. It is not a reflection of your efforts or worth or even their love and care for you - but just a fact that we are human, sinful, not capable of acting in love all of the time. God alone determines our worth - and He has told us that we are precious to Him!
The following day she told me that she had been thinking more about the contest and had a new perspective. She said it was really great that there are so many girls (over 12,000 entered in the contest!) that are doing things to help other people. That's my girl!
Rebecca has continued to work hard on her bracelet sales. She went to campus with her Dad last Wednesday. She sold bracelets in a couple of venues and almost sold ALL that she had! She raised over $800 in ONE day! This is her biggest day yet! Check out the new total in the sidebar!
Almost $4000!!!
She still has some orders to fill and then I'm not sure where we'll go from here. We also have some friends in other states that are interested in helping sell some of her bracelets, so maybe that will be our next opportunity - we'll see. I'll keep you updated as best I can.
Thanks for checking in!
Love,
Leslie
Friday, May 4, 2007
Looking Back
My mind is full of so many things tonight. I have been looking back - and it hurts to see some of the places I've been. I was reading some old threads on the FIAR board (the homeschool community I'm a part of) and seeing my hurting and broken heart. I was reading one from mid-March and the despair was just overwhelming. I tear up to think about it now. I was struggling then with feeding, breastfeeding/pumping, little to no sleep each night, my sweet girl in heart failure, the unknown of surgery and trying to cope with the knowledge that my best friend of 17 years was moving. It was just too much!
I know that often people say that God won't give you more than you can handle, but I don't think that's accurate. I know that this has been more than I can handle. It hasn't been more than God could handle, but it was too much for me. I've wanted to be honest with all that I'm facing. Yet I also want to give hope. My hope lies in a God that is good, loving and faithful. It's one thing to think or believe that when things are going well - life is good, prayers are answered and you are happy for the most part. It's quite another to believe it when you are in the midst of trials. When the trials keep coming and coming and you feel that you just can't handle one more thing. Then what do you know and believe about God? Does His character change based on my circumstances? Thankfully, no. What does change is my perspective - or at least it is what needs to change.
Before Eliana was born, I was studying the book of James. The first chapter talks about trials and how we are to consider them joy. That's a tough one. I had a hard time wrapping my mind around how that was to happen. How are we supposed to do that? I know one wise friend told me during the midst of a really low time when I just "wanted to be happy again" that life wasn't about me being happy and that God hadn't promised us a "happy life".
Another dear friend commented recently that "Life is hard. God is good." So true! I know that in the midst of the pain here, it gives me a better perspective on a life eternal where there is no pain - no sadness - no hurt of any kind. How thankful I am to know a loving God that has prepared a place for me in heaven. How I want others to know God - to know He is good - to know that He is love! He loves us so very, very much.
With love,
Leslie
I know that often people say that God won't give you more than you can handle, but I don't think that's accurate. I know that this has been more than I can handle. It hasn't been more than God could handle, but it was too much for me. I've wanted to be honest with all that I'm facing. Yet I also want to give hope. My hope lies in a God that is good, loving and faithful. It's one thing to think or believe that when things are going well - life is good, prayers are answered and you are happy for the most part. It's quite another to believe it when you are in the midst of trials. When the trials keep coming and coming and you feel that you just can't handle one more thing. Then what do you know and believe about God? Does His character change based on my circumstances? Thankfully, no. What does change is my perspective - or at least it is what needs to change.
Before Eliana was born, I was studying the book of James. The first chapter talks about trials and how we are to consider them joy. That's a tough one. I had a hard time wrapping my mind around how that was to happen. How are we supposed to do that? I know one wise friend told me during the midst of a really low time when I just "wanted to be happy again" that life wasn't about me being happy and that God hadn't promised us a "happy life".
Another dear friend commented recently that "Life is hard. God is good." So true! I know that in the midst of the pain here, it gives me a better perspective on a life eternal where there is no pain - no sadness - no hurt of any kind. How thankful I am to know a loving God that has prepared a place for me in heaven. How I want others to know God - to know He is good - to know that He is love! He loves us so very, very much.
With love,
Leslie
Wednesday, May 2, 2007
Update on ENT visit/ Hearing testing
Hi Friends,
I have so many thoughts and emotions awash in my mind. I tried to start writing it out, but haven't yet finished. So much going on in my mind and heart. So many people I want to hug and thank. So little time in my days.
I have been copying the prayer requests I've posted for Eliana over the last month and a half on the FIAR board (homeschool community I'm a part of). I have once again been awash with the love that has been poured out on our family. Once again I sit here crying. So very thankful for a God that loves me (all of us!), so thankful to be a part of this body, so thankful for the answers to prayers and even thankful that I'm learning patience for the prayer requests that haven't been answered in the ways that I have hoped.
I'm thankful that I'm learning in a new way that God is good. It's easy to feel that way when life is good - things are going your way - and you can see purpose in what is happening. It's been quite another to know that He is unchanging when you feel scared, overwhelmed, alone and honestly, angry for the answers that aren't what you wanted, asked or prayed for.
I have so much I want to share and will try to post more tomorrow, but did want to update on today. Thank you to all that shared your stories and experiences with me. It does help to hear them.
We met with the ENT today. He confirmed that her eardrum isn't moving in the left ear. Tried again to do the "pressure" hearing test and did not get good results. She was asleep when they started which I thought might help - but woke up quickly and cried through the entire thing! He feels that it is "most likely" fluid, though he isn't certain. What he wants to do is wait another 3 months to see if it has resolved on it's own. If not, she will most likely be a candidate for surgery to have tubes placed in her ears. She would have a hearing test done then while she is sedated.
So, the things I wanted prayer for weren't really answered - or not in the clear manner that i desired. I wanted to know what was going on, I wanted a clear diagnosis and I wanted there to be nothing wrong with Eliana's hearing. Now, the last thing I listed was for patience for me as we wait for answers. I do feel a peace about this. Do I wish we "knew" what was going on? Yes! Do I wish that she had gotten a good read on her test? Yes! (Esp when he removed some wax from her ear - I had hoped that might be the problem.) Do I trust that things will work out? Again, yes.
The ENT also encouraged me that it was great that one ear is testing just fine and that this is what she needs for development at this age. In another couple of months, she will need to have correction if there are still problems. Oh, and when he looked in her ear he mentioned that her passage wasn't so small. Then said, "That's a good thing!" :)Yes, thank you God for this gift to our sweet girl!
We are scheduled to see him again at the end of July. I'll definitely update as we get close to that date.
I also stopped by my OB office today as it was close to the ENT (and on the other side of town from where I live). I know a lot of the people there since I'm in so very often with my pregnancies (typically at least once per week - sometimes more - for the entire pregnancy). I love the people there! They have taken great care of me and I always miss going in after I've had my babies. Anyway, it was such fun to stop in and see some of the sweet people there! One of the gals told me that she had been praying for us all of these months. :hcry: What sweet encouragment. Oh God, thank you for knitting so many precious people together to pray for our Eliana!
It's very late and I should close. Will try to write more tomorrow. Wanted to update you sweet friends
With love,
Leslie
I have so many thoughts and emotions awash in my mind. I tried to start writing it out, but haven't yet finished. So much going on in my mind and heart. So many people I want to hug and thank. So little time in my days.
I have been copying the prayer requests I've posted for Eliana over the last month and a half on the FIAR board (homeschool community I'm a part of). I have once again been awash with the love that has been poured out on our family. Once again I sit here crying. So very thankful for a God that loves me (all of us!), so thankful to be a part of this body, so thankful for the answers to prayers and even thankful that I'm learning patience for the prayer requests that haven't been answered in the ways that I have hoped.
I'm thankful that I'm learning in a new way that God is good. It's easy to feel that way when life is good - things are going your way - and you can see purpose in what is happening. It's been quite another to know that He is unchanging when you feel scared, overwhelmed, alone and honestly, angry for the answers that aren't what you wanted, asked or prayed for.
I have so much I want to share and will try to post more tomorrow, but did want to update on today. Thank you to all that shared your stories and experiences with me. It does help to hear them.
We met with the ENT today. He confirmed that her eardrum isn't moving in the left ear. Tried again to do the "pressure" hearing test and did not get good results. She was asleep when they started which I thought might help - but woke up quickly and cried through the entire thing! He feels that it is "most likely" fluid, though he isn't certain. What he wants to do is wait another 3 months to see if it has resolved on it's own. If not, she will most likely be a candidate for surgery to have tubes placed in her ears. She would have a hearing test done then while she is sedated.
So, the things I wanted prayer for weren't really answered - or not in the clear manner that i desired. I wanted to know what was going on, I wanted a clear diagnosis and I wanted there to be nothing wrong with Eliana's hearing. Now, the last thing I listed was for patience for me as we wait for answers. I do feel a peace about this. Do I wish we "knew" what was going on? Yes! Do I wish that she had gotten a good read on her test? Yes! (Esp when he removed some wax from her ear - I had hoped that might be the problem.) Do I trust that things will work out? Again, yes.
The ENT also encouraged me that it was great that one ear is testing just fine and that this is what she needs for development at this age. In another couple of months, she will need to have correction if there are still problems. Oh, and when he looked in her ear he mentioned that her passage wasn't so small. Then said, "That's a good thing!" :)Yes, thank you God for this gift to our sweet girl!
We are scheduled to see him again at the end of July. I'll definitely update as we get close to that date.
I also stopped by my OB office today as it was close to the ENT (and on the other side of town from where I live). I know a lot of the people there since I'm in so very often with my pregnancies (typically at least once per week - sometimes more - for the entire pregnancy). I love the people there! They have taken great care of me and I always miss going in after I've had my babies. Anyway, it was such fun to stop in and see some of the sweet people there! One of the gals told me that she had been praying for us all of these months. :hcry: What sweet encouragment. Oh God, thank you for knitting so many precious people together to pray for our Eliana!
It's very late and I should close. Will try to write more tomorrow. Wanted to update you sweet friends
With love,
Leslie
Monday, April 30, 2007
Trying to add another photo
This was the first day after Eliana's surgery when the children came to visit her. She gave Christopher a smile - her first after surgery. I was thrilled to see her smile!!! I was concern ed that she might lose her ability to smile as I had heard this was possible after heart surgery. What a thankful praise to God to see that it didn't happen to Eliana!
With love,
Leslie
PS I added two entries today, so see the longer one below.
With love,
Leslie
PS I added two entries today, so see the longer one below.
What fun we are having with Aunt Karen!
It has been so wonderful to have Roger's sister, Karen, here to visit and help us out! She is such a sweetheart! The children are just loving having her here to play with, talk to and just have fun hanging out! We are all going to be sad to see her leave - though I'm sure her family is going to be glad to have her home!
Karen took the children strawberry picking today - and they came home with 8 flats of berries! They had a great time and we are trying to figure out what to do with so many berries - in addition to sharing some with friends. They had a grand time making smoothies and popsicles with them earlier.
Karen has played games, read books, learned to bead bracelets and so much more! She has helped out tons around the house, held Eliana and even took over a feeding today so I could go and get my hair cut. She really is a sweet sister-in-law. I'm so thankful for her. I just wished that they lived closer to us!
Eliana is doing pretty well. She is crying more now - which is so unusual for her! She almost NEVER cried before her surgery. Nothing bothered her - she rarely ever even protested for food. I know that wasn't normal, but it is what we were used to with her. So now I'm trying to figure out her cries. It's been a little hard as there is still much I don't know. Tonight getting close to 9pm she started to fuss - then cry as I got her bottle ready. She wanted to eat - but just couldn't seem to get going. She seemed a little "stuffy", but I couldn't suction anything from her nose. I ended up holding her and bouncing her and trying to settle her for about 30 minutes. She took her whole feeding by tube. I'm thankful we still have that option, though I do want to get rid of it too! It's been in much longer than I had anticipated it would be.
Most recent prayer requests from here involve her hearing and getting started with therapists. Eliana has an appointment on Wed at 1pm with an ENT (Ear, Nose & Throat specialist).
We are also trying to figure out therapy for Eliana and it too is overwhelming. Trying to "choose" someone and to figure out what she needs is hard when there is just so much I don't know. I would love prayers for wisdom in choosing the right therapist! This is a long-term relationship (though I know I can change it if isn't working - I really don't want to do that.) This is someone that will be in my home regularly and I really want to feel comfortable with her! Honestly the idea of people in my home - that I don't know - is a little intimidating. I don't want to feel that we have to have it all together - clean house, well behaved children, etc. in order not to be judged. I've probably just reading to many stories of CPS investigations - which I know this isn't. I know my fears may sound irrational - and hopefully I'll feel that way too after meeting with them!!
I have greatly appreciate the many friends that have shared stories with me about their own children facing similar situations with hearing - and how all turned out fine! I am hoping and praying that they same will be true for Eliana. I have seen God work out so many details - even the smallest ones - and know that no matter what the outcome that He will work in this too. I know that He loves my little girl more than we do.
Eliana is sleeping and taking her last feeding of the day. It's just after midnight here and I'll be going to sleep soon too. I hope you are having a great day wherever you are! I am thankful for all of you - for your prayers, your encouragment and your love. We are blessed beyond measure!
With love,
Leslie
PS I know it's late to ask this, but if any of you want to be put on my "mailing list" then you will receive a notice when I've posted to the blog. Just let me know - send me an email - and I'll add you to the list.
Karen took the children strawberry picking today - and they came home with 8 flats of berries! They had a great time and we are trying to figure out what to do with so many berries - in addition to sharing some with friends. They had a grand time making smoothies and popsicles with them earlier.
Karen has played games, read books, learned to bead bracelets and so much more! She has helped out tons around the house, held Eliana and even took over a feeding today so I could go and get my hair cut. She really is a sweet sister-in-law. I'm so thankful for her. I just wished that they lived closer to us!
Eliana is doing pretty well. She is crying more now - which is so unusual for her! She almost NEVER cried before her surgery. Nothing bothered her - she rarely ever even protested for food. I know that wasn't normal, but it is what we were used to with her. So now I'm trying to figure out her cries. It's been a little hard as there is still much I don't know. Tonight getting close to 9pm she started to fuss - then cry as I got her bottle ready. She wanted to eat - but just couldn't seem to get going. She seemed a little "stuffy", but I couldn't suction anything from her nose. I ended up holding her and bouncing her and trying to settle her for about 30 minutes. She took her whole feeding by tube. I'm thankful we still have that option, though I do want to get rid of it too! It's been in much longer than I had anticipated it would be.
Most recent prayer requests from here involve her hearing and getting started with therapists. Eliana has an appointment on Wed at 1pm with an ENT (Ear, Nose & Throat specialist).
- Any problems with her ears would be seen/detected by the ENT with an accurate diagnosis
- No hearing loss for my little girl
- Wisdom in knowing how to treat her.
- Peace for me as I wait - this has been a long season of waiting!
We are also trying to figure out therapy for Eliana and it too is overwhelming. Trying to "choose" someone and to figure out what she needs is hard when there is just so much I don't know. I would love prayers for wisdom in choosing the right therapist! This is a long-term relationship (though I know I can change it if isn't working - I really don't want to do that.) This is someone that will be in my home regularly and I really want to feel comfortable with her! Honestly the idea of people in my home - that I don't know - is a little intimidating. I don't want to feel that we have to have it all together - clean house, well behaved children, etc. in order not to be judged. I've probably just reading to many stories of CPS investigations - which I know this isn't. I know my fears may sound irrational - and hopefully I'll feel that way too after meeting with them!!
I have greatly appreciate the many friends that have shared stories with me about their own children facing similar situations with hearing - and how all turned out fine! I am hoping and praying that they same will be true for Eliana. I have seen God work out so many details - even the smallest ones - and know that no matter what the outcome that He will work in this too. I know that He loves my little girl more than we do.
Eliana is sleeping and taking her last feeding of the day. It's just after midnight here and I'll be going to sleep soon too. I hope you are having a great day wherever you are! I am thankful for all of you - for your prayers, your encouragment and your love. We are blessed beyond measure!
With love,
Leslie
PS I know it's late to ask this, but if any of you want to be put on my "mailing list" then you will receive a notice when I've posted to the blog. Just let me know - send me an email - and I'll add you to the list.
Saturday, April 28, 2007
Visit with Eliana's surgeon yesterday
Just to update on Eliana's most recent medical appointment. She was scheduled to meet with her surgeon one last time yesterday (Fri 4/27). When we arrived we also found out that she was scheduled for blood work, a chest x-ray and an EKG. Wish we had known that in advance so I could have given her some tylenol. She didn't like the heel prick and cried and cried as they tried to get enough blood drawn. The other two tests were easy and she didn't mind them at all. Everything was fine with both the chest x-ray and EKG.
We had a good meeting with Dr. Jaggers. He thinks she looks well and is healing well. Her incision site looks good and her bones (sternum) are also healing well. He said that often it is hard for bones to heal well because babies can be very wiggly and pull the bones apart, though thankfully that hasn't happened with Eliana. She is approved to be on her tummy and to have a bath. We still need to be careful on how we hold her so as not to put stress on her chest (something that might pull on it like picking her up under her arms).
We asked some questions about her surgery and learned that her ASD (Atrial Septal Defect) was larger than they thought prior to the surgery. Instead of suturing it, he also used a patch on that hole. The patch is made from a "gortex" material that is resistant to bacteria. Her skin tissues will grow around it. As he was explaining what he had to do to repair this hole, he was looking for paper. I handed him my notebook and he drew a picture of her heart and where the holes were located. Explaining how the ASD was under the septal leaflet of the valve. (Sorry if this is too much technical info, though some will like it.) He had to cut away the tendons (may not be the right word) that helped this valve to open and close to be able to get to this hole and repair it.
Dr. Jaggers seemed to like explaining all of this and I think it's neat to have the hand-drawn picture from one that has seen her heart. Eliana's baby scrapbook is going to be filled with a lot of unusual things - whenever I have time to get back to that hobby.
I'm going to go nap while the house is quiet and Eliana is sleeping. She is feeling better, though still having some fussy times. Yesterday about 5:30pm she started crying and wouldn't be settled. I tried feeding her and she seemed hungry. After swallowing though, she cried more. Not sure if she is still having pain in her throat? I tried a little longer to feed her, then stopped and focused on getting her settled. She fell asleep and didn't wake until 7am this morning! The day before yesterday we had a similar time only she fell asleep about 4 or 4:30 in the afternoon and slept until the next morning.
More later.
Love, Leslie
We had a good meeting with Dr. Jaggers. He thinks she looks well and is healing well. Her incision site looks good and her bones (sternum) are also healing well. He said that often it is hard for bones to heal well because babies can be very wiggly and pull the bones apart, though thankfully that hasn't happened with Eliana. She is approved to be on her tummy and to have a bath. We still need to be careful on how we hold her so as not to put stress on her chest (something that might pull on it like picking her up under her arms).
We asked some questions about her surgery and learned that her ASD (Atrial Septal Defect) was larger than they thought prior to the surgery. Instead of suturing it, he also used a patch on that hole. The patch is made from a "gortex" material that is resistant to bacteria. Her skin tissues will grow around it. As he was explaining what he had to do to repair this hole, he was looking for paper. I handed him my notebook and he drew a picture of her heart and where the holes were located. Explaining how the ASD was under the septal leaflet of the valve. (Sorry if this is too much technical info, though some will like it.) He had to cut away the tendons (may not be the right word) that helped this valve to open and close to be able to get to this hole and repair it.
Dr. Jaggers seemed to like explaining all of this and I think it's neat to have the hand-drawn picture from one that has seen her heart. Eliana's baby scrapbook is going to be filled with a lot of unusual things - whenever I have time to get back to that hobby.
I'm going to go nap while the house is quiet and Eliana is sleeping. She is feeling better, though still having some fussy times. Yesterday about 5:30pm she started crying and wouldn't be settled. I tried feeding her and she seemed hungry. After swallowing though, she cried more. Not sure if she is still having pain in her throat? I tried a little longer to feed her, then stopped and focused on getting her settled. She fell asleep and didn't wake until 7am this morning! The day before yesterday we had a similar time only she fell asleep about 4 or 4:30 in the afternoon and slept until the next morning.
More later.
Love, Leslie
Thursday, April 26, 2007
Photos and More
It's been a busy last 24 hours. Last night, Roger's sister arrived to stay for a week and help us. We are all thrilled to have Aunt Karen here!!! She had a tough time getting here with cancellations and rerouted planes and we were glad to have her finally here! She is a nurse with lots of experience. She is a delight and we are thankful she is willing to be here for us.
Eliana had a great visit with her pediatrician on Tuesday. Her weight is up again. In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week! How amazing is that?! Sweet baby girl really was using a lot of energy with her heart. We aren't going back to the ped for a month! A month! Seems like a really long time when we've been there weekly or every other week for the last 4 months. I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined! I'm so thankful for the excellent care she has received there!
Today we visited a feeding specialist. She watched Eliana and tried to give me tips. We tried changing some of the bottle pieces to help her out, but just need to keep working on it. She is doing better, but still has a ways to go before we are getting rid of that feeding tube. The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.
I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it. Oh yes, we are doing that too. When Eliana was an infant, she passed the hearing screen in her right ear but not the left. I even went back when she was a week old and had the test redone - same results. We haven't followed up again until now - well, because we were really focused on her heart.
They wanted her asleep for the test. She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her. She wasn't fussy though - very still and quiet for an awake baby. Even so, they couldn't get a reading with the first test or the second. The third test also did not give a passing mark in her left ear, but did in her right. As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!
The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication. He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up. He can't be sure that there is something wrong with the left ear, but she could have some hearing loss. I listened and remained calm even though I just wanted to cry! Rebecca was with me and I didn't want her upset. Just before we left he did one more test and told us that her left eardrum wasn't really moving. Later when I talked with Eliana's ped. she said that this most likely indicated fluid. I'm hoping and praying that is what is happening.
Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again? To hold my baby and not worry about her heart and surgery. This just surprised me today. I wasn't prepared to think my baby might have hearing problems too.
On my way home, I called and set up an ENT appt for next Wed for Eliana. Please pray that if there are problems, that the ENT will be able to detect them. Of course, I'm also praying that there are no problems! Praying that it is just fluid and that she has not suffered hearing loss. Thank you for praying once again for our baby!
Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this. I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles. (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.) I felt God comforting me by saying that her soul is what He was talking about - not her earthly body. Her soul is made in His very image! Later I was reminded of a verse in which it tells us that God does not see the same way people see. People look at the outside of a person, but the Lord looks at the heart. Thank you God for encouraging my heart once again. The heart. That has been a huge lesson for me this year.
OK, I've been promising photos and here they are in slideshow format. I've been wanting to clean them up - or post them directly to the site, but haven't been able to. I Will try to post some here if the link to the slideshow doesn't work.
***WARNING*** I don't think that these are as "bad" as the last slideshow. However, you can see her incision on some of the photos. If you have children watching, you might want to preview them.
Here's the first set. Most are the day after surgery. The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that! One with a man in blue scrubs is one of her anesthesiologists. I tried to label the pictures, but not sure how that will work. I'm not sure if the link will work or if you'll have to cut and paste. Let me know if it doesn't work.
http://s176.photobucket.com/albums/w187/rogernelsen/4-17-07/?action=view¤t=1177429633.pbw
Second set - This is two days post-op. Fewer cords, no IV, etc. The man holding her when she is fussing is Dr. Jaggers, her surgeon. Sorry for the weird effects of my striped shirt.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-18-07/?action=view¤t=1176954299.pbw
Final Day. The first picture is Eliana's cardiologist, Dr. Carboni. Pictures at the end are of Duke Hospital.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-19-07/?action=view¤t=1177227073.pbw
Tomorrow is Eliana's follow-up appointment with her surgeon. Please pray for wisdom in knowing questions that we should ask. I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.
I'm worn out and am hoping to go to sleep soon. Eliana was up late last night, most of the day and has been asleep since late afternoon. I'm hoping she'll still be able to sleep through the night.
Thank you for your prayers for us.
With love
Leslie
Eliana had a great visit with her pediatrician on Tuesday. Her weight is up again. In fact, when plotted on the growth chart, she jumped up in the percentage points in the last week! How amazing is that?! Sweet baby girl really was using a lot of energy with her heart. We aren't going back to the ped for a month! A month! Seems like a really long time when we've been there weekly or every other week for the last 4 months. I hadn't really thought of this before, but I'm guessing that Eliana has been to the doctor more than all of my other children combined! I'm so thankful for the excellent care she has received there!
Today we visited a feeding specialist. She watched Eliana and tried to give me tips. We tried changing some of the bottle pieces to help her out, but just need to keep working on it. She is doing better, but still has a ways to go before we are getting rid of that feeding tube. The feeding therapist did tell me that most of the cardiac babies are released with feeding tubes - it's a skill they have to learn/re-learn.
I had forgotten we were doing audiology today until we arrived there and I heard someone else mention it. Oh yes, we are doing that too. When Eliana was an infant, she passed the hearing screen in her right ear but not the left. I even went back when she was a week old and had the test redone - same results. We haven't followed up again until now - well, because we were really focused on her heart.
They wanted her asleep for the test. She cooperated by falling asleep during the meeting with the feeding therapist, but then woke up when they hooked up all of the electrodes onto her. She wasn't fussy though - very still and quiet for an awake baby. Even so, they couldn't get a reading with the first test or the second. The third test also did not give a passing mark in her left ear, but did in her right. As she is being tested I just keep praying for accurate results as I'm watching the screen wanting to see PASS!
The audiologist tried to be positive saying that it was great she has hearing in one ear as this is so important for communication. He reminded me that because she has small ear passages, she may be more prone to ear infections and fluid build up. He can't be sure that there is something wrong with the left ear, but she could have some hearing loss. I listened and remained calm even though I just wanted to cry! Rebecca was with me and I didn't want her upset. Just before we left he did one more test and told us that her left eardrum wasn't really moving. Later when I talked with Eliana's ped. she said that this most likely indicated fluid. I'm hoping and praying that is what is happening.
Do you remember me saying just a couple of days ago that I just wanted some time to be "normal" again? To hold my baby and not worry about her heart and surgery. This just surprised me today. I wasn't prepared to think my baby might have hearing problems too.
On my way home, I called and set up an ENT appt for next Wed for Eliana. Please pray that if there are problems, that the ENT will be able to detect them. Of course, I'm also praying that there are no problems! Praying that it is just fluid and that she has not suffered hearing loss. Thank you for praying once again for our baby!
Before I rested this afternoon (I was able to take a nap thanks to Karen!!!), I talked some with God about all of this. I asked Him about how she was "fearfully and wonderfully made" if she was having so many health troubles. (Now I don't doubt for a minute that she both fearfully and wonderfully made - just not sure how the troubles fit into it.) I felt God comforting me by saying that her soul is what He was talking about - not her earthly body. Her soul is made in His very image! Later I was reminded of a verse in which it tells us that God does not see the same way people see. People look at the outside of a person, but the Lord looks at the heart. Thank you God for encouraging my heart once again. The heart. That has been a huge lesson for me this year.
OK, I've been promising photos and here they are in slideshow format. I've been wanting to clean them up - or post them directly to the site, but haven't been able to. I Will try to post some here if the link to the slideshow doesn't work.
***WARNING*** I don't think that these are as "bad" as the last slideshow. However, you can see her incision on some of the photos. If you have children watching, you might want to preview them.
Here's the first set. Most are the day after surgery. The thing on her head is an IV, covered with a little cup (I/2 of it) and her bow on top of that! One with a man in blue scrubs is one of her anesthesiologists. I tried to label the pictures, but not sure how that will work. I'm not sure if the link will work or if you'll have to cut and paste. Let me know if it doesn't work.
http://s176.photobucket.com/albums/w187/rogernelsen/4-17-07/?action=view¤t=1177429633.pbw
Second set - This is two days post-op. Fewer cords, no IV, etc. The man holding her when she is fussing is Dr. Jaggers, her surgeon. Sorry for the weird effects of my striped shirt.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-18-07/?action=view¤t=1176954299.pbw
Final Day. The first picture is Eliana's cardiologist, Dr. Carboni. Pictures at the end are of Duke Hospital.
http://s176.photobucket.com/albums/w187/rogernelsen/Eliana-4-19-07/?action=view¤t=1177227073.pbw
Tomorrow is Eliana's follow-up appointment with her surgeon. Please pray for wisdom in knowing questions that we should ask. I want to find out all that we need to know as I don't think we'll have the opportunity again to meet with Dr. Jaggers.
I'm worn out and am hoping to go to sleep soon. Eliana was up late last night, most of the day and has been asleep since late afternoon. I'm hoping she'll still be able to sleep through the night.
Thank you for your prayers for us.
With love
Leslie
Subscribe to:
Posts (Atom)
Posts
