Hi Friends,
Wanting to update you a little more on Eliana. She is in a critical period now - and we will know much more about her recovery tomorrow. Please keep praying for her!!!
I have seen God's hand on this day and on so many things that have happened. I will try to write some of that when I'm able to. I appreciate prayers and know that it has paved the way for so many things to go so smoothly for Eliana today.
When I was with her this afternoon, she seemed to be having some difficulty breathing. The nurse told me that she was fighting the tube. She then started to wake up some and then started gagging. They decided to remove the breathing tube and we needed to leave the room.
She looked so much better with the large tube out of her mouth. It was replaced with smaller nasal tubes for oxygen. The nurse put the clear tape on both cheeks - and nothing yet on the hurt places. Please pray for healing for her skin.
She woke up again when we went back to see her. She started crying. A really, really pitiful and weak cry. It hurt my heart to hear her as her voice is very hoarse. I couldn't pick her up which I so wanted to do!!! There are limited places to touch her too. I tried stroking the very top of her head and getting close to her face.
One of the nurses suggested a pacifier. We tried that, without much success. I told them she really prefers her hands (which aren't an option right now). They brought something to dip the paci in to try to help her, but she wasn't all that interested in sucking.
The rounding doctor came by and ordered more pain medicine for her which helped greatly and allowed her to go back to sleep! The dr commented several times on how cute Eliana is. She also said that she would love to hold her - if I didn't mind. I told her that I would love to know she was being held as that is her preferred method of being comforted! She told me that she likes to hold the babies while sitting in a recliner during the night. I told her that I would feel much better about leaving Eliana there during the night without me if I knew that someone was holding and loving on her! (What a sweet praise that this doctor wants to do that!)
I was very blessed to have sweet friends join us today - to talk, laugh and best of all pray! To notice what the details of what was happening and to pray for problems and to praise God for the blessings.
Need to run. I'm home for dinner and then off again to the hospital. I'm planning to come home to sleep tonight.
Thank you so very much for your prayers. Please keep praying for her recovery.
With love,
Leslie
Monday, April 16, 2007
Just saw my baby girl!
We walked up to the PICU about 12:30 and asked to see Eliana. We were able to go right in! I heard these words and went as quickly as possible to the doors. I hurried in and then paused to find out her room number. When I was told I half ran to her room. I just wanted to see my baby girl! She looks so very tiny in such a big bed.
It is so good to see her. It hasn’t been that many hours - 5.5 hours - but it seemed like forever to be away from her. She has a LOT of wires/lines attached to her - several IV lines, a catheter, a chest tube, a breathing tube, ekg lines and more. It was hard to find a place to touch on her and kiss her - but I found them! I can’t resist touching and stroking her. I even added a pink bow to her hair.
She is still heavily sedated. The nurse said that she is doing well. They hope to remove the breathing tube later today. The chest tube may be removed tomorrow depending on how she is doing.
I’m so very, very tired. It seems like a long, long time since I’ve had a full night’s sleep. A lot of stress in these last 4 months too! I may go home or to a friends house to take a nap. It’s hard to think of leaving my baby. As a mom, don’t you always put yourself and your own needs last? I do plan to get some sleep today. I’m so very relieved that this part is over!
Please continue to pray for Eliana. There are still risks of complications. We’ll know more by tomorrow morning how things are looking - but so far, everything looks great! Please pray for healing, health and anything else you feel led to add.
Thank you sweet friends for your prayers and words of encouragment!
With love,
Leslie
It is so good to see her. It hasn’t been that many hours - 5.5 hours - but it seemed like forever to be away from her. She has a LOT of wires/lines attached to her - several IV lines, a catheter, a chest tube, a breathing tube, ekg lines and more. It was hard to find a place to touch on her and kiss her - but I found them! I can’t resist touching and stroking her. I even added a pink bow to her hair.
She is still heavily sedated. The nurse said that she is doing well. They hope to remove the breathing tube later today. The chest tube may be removed tomorrow depending on how she is doing.
I’m so very, very tired. It seems like a long, long time since I’ve had a full night’s sleep. A lot of stress in these last 4 months too! I may go home or to a friends house to take a nap. It’s hard to think of leaving my baby. As a mom, don’t you always put yourself and your own needs last? I do plan to get some sleep today. I’m so very relieved that this part is over!
Please continue to pray for Eliana. There are still risks of complications. We’ll know more by tomorrow morning how things are looking - but so far, everything looks great! Please pray for healing, health and anything else you feel led to add.
Thank you sweet friends for your prayers and words of encouragment!
With love,
Leslie
Holes are repaired!
We just spoke to the nurse practioner who has been in with Eliana during the surgery. She said that all has gone well! Her holes are repaired!!! (I need the emoticon with many happy tears here.) They are still working on her - chest tubes need to be inserted and all that is involved with closing her up. We are hoping to meet with her surgeon, Dr. Jaggers in about 45 minutes or whenever the surgery is complete.
After we have spoken with Dr. Jaggers, Eliana will be moved up to the PICU. It will be about 1.5 hours until we will be able to see her then. I really want to see my little girl. I've been holding onto her hair bow and really just want to hold her.
Thank you for praying. Please continue. I'll write as I know more.
With love,
Leslie
Surgery started at 8:45am
We just received word that surgery has begun and all is going well. Will continue to update as possible.
Love,
Leslie
Love,
Leslie
Update at 7:30am
Hi sweet friends,
We are here at Duke. Our morning started at 5:30am - 30 minutes later than we had planned as we slept through the alarms. Thankfully we woke up then! We quickly got ready and said good-bye to Rebecca and my mom. Our 2yo woke up as we were leaving so Rebecca went to be with him. I think that this may have been a gift from God to her.
We made it to Duke at 6:17 - a few minutes late. It was fine though as we had to wait to be checked in. We went back to the pre-op. Eliana was checked - oxygen (96%), bp, temp (low and hard to get a good reading). They were concerned about her temps so we had her wrapped in warm blankets after dressing her in a tiny hospital gown.
Then one of the anesthesiologist (sp) came in to meet us. He is very nice. Shortly after the attending anesthesiologist also joined us. He is also very very nice. They explained what would happen. They told us that they would lower her temp to 30 so her temps weren't a concern. They are also going to try to use some adhesive that will hopefully not irritate her skin any more than it already is. One of the drs said "we'll fix her heart today." The other doctor thanked us for letting them have her. I could tell that they both enjoyed children. So very nice.
We handed her over and they carried her down the hall. I watched the two of them talking and could see Eliana's sweet head - with her hair sticking straight up - as they went to the OR. We weren't allowed to go with her to OR due to her age. She was fine being handed over to them.
We are out in the waiting room now with 3 of our friends. God's peace is so very evident. Thank you all for your prayers. Will update again as possible.
Love,
Leslie
We are here at Duke. Our morning started at 5:30am - 30 minutes later than we had planned as we slept through the alarms. Thankfully we woke up then! We quickly got ready and said good-bye to Rebecca and my mom. Our 2yo woke up as we were leaving so Rebecca went to be with him. I think that this may have been a gift from God to her.
We made it to Duke at 6:17 - a few minutes late. It was fine though as we had to wait to be checked in. We went back to the pre-op. Eliana was checked - oxygen (96%), bp, temp (low and hard to get a good reading). They were concerned about her temps so we had her wrapped in warm blankets after dressing her in a tiny hospital gown.
Then one of the anesthesiologist (sp) came in to meet us. He is very nice. Shortly after the attending anesthesiologist also joined us. He is also very very nice. They explained what would happen. They told us that they would lower her temp to 30 so her temps weren't a concern. They are also going to try to use some adhesive that will hopefully not irritate her skin any more than it already is. One of the drs said "we'll fix her heart today." The other doctor thanked us for letting them have her. I could tell that they both enjoyed children. So very nice.
We handed her over and they carried her down the hall. I watched the two of them talking and could see Eliana's sweet head - with her hair sticking straight up - as they went to the OR. We weren't allowed to go with her to OR due to her age. She was fine being handed over to them.
We are out in the waiting room now with 3 of our friends. God's peace is so very evident. Thank you all for your prayers. Will update again as possible.
Love,
Leslie
Sunday, April 15, 2007
Today is the day!
One last time of looking at the ticker and seeing the days count down. 0 days. It's time. April 16th - a date I will likely never forget.
Oh dear friends, I can tell you have been praying! I feel it in my very soul. My heart and spirit have been calm today beyond anything I could ever have expected. I know it isn't me but my precious Lord. Thank you faithful friends!!! I wish I could hug and respond to each one of you. I appreciate so very much your love toward our family. I am moved to tears every time I read a note, a prayer or a special effort for my family. I am so humbled that you would do this for us!
I am trying not to think on the specifics of what is going to happen. When I do I can feel fear start to crowd in. My mind starts reviewing the "risks" and "statistics" and I start wondering if my precious baby is going to die. I just don't want to think on this. I can't. Oh, I am so very thankful for my precious little girl. She is in my arms right now. Sleeping so peacefully.
One additional thing to add to your prayers is for Eliana's skin. She is really reacting to the tape we have used for her feeding tube. It was a mild irritation at first, but has really gotten bad over the last couple of days. I switched sides for her tube on Fri as it was looking irritated. The side that it has been on since is very irritated - red and even "crusty" in spots. I removed her tube after her last feeding to give her skin some time to try and heal. I know though that it will need to be covered again soon. Please pray that they would be able to use something that wouldn't hurt her.
It's about 2am here. Yes, I know I should be asleep. I am tired, but who can sleep? We'll be getting up at 5am and leaving around 5:40. We are to be there at 6:15am. We will need to check in and do some pre-op things - vitals, meet with the anesthisiologist, sign another consent and hand her over. I was told we would not be allowed to take her back to the OR due to her age. Then we will wait. The prep for surgery can take about an hour. She will have numerous IVs, tubes, etc to get placed and started.
Eliana has had her last feeding before surgery. Can you pray that we won't experience delays so that she doesn't get hungry. And that if we do have delays that we will be able to give her some clear fluids.
We have several friends joining us tomorrow while we wait. My other children will be home with my parents. I am thankful for all of the support we have - here close by and many others from afar. What a gift you are to me and my family!
We are planning to take a laptop with us and will try to update as often as we are able to (if we can get a connection).
With much love,
Leslie
Oh dear friends, I can tell you have been praying! I feel it in my very soul. My heart and spirit have been calm today beyond anything I could ever have expected. I know it isn't me but my precious Lord. Thank you faithful friends!!! I wish I could hug and respond to each one of you. I appreciate so very much your love toward our family. I am moved to tears every time I read a note, a prayer or a special effort for my family. I am so humbled that you would do this for us!
I am trying not to think on the specifics of what is going to happen. When I do I can feel fear start to crowd in. My mind starts reviewing the "risks" and "statistics" and I start wondering if my precious baby is going to die. I just don't want to think on this. I can't. Oh, I am so very thankful for my precious little girl. She is in my arms right now. Sleeping so peacefully.
One additional thing to add to your prayers is for Eliana's skin. She is really reacting to the tape we have used for her feeding tube. It was a mild irritation at first, but has really gotten bad over the last couple of days. I switched sides for her tube on Fri as it was looking irritated. The side that it has been on since is very irritated - red and even "crusty" in spots. I removed her tube after her last feeding to give her skin some time to try and heal. I know though that it will need to be covered again soon. Please pray that they would be able to use something that wouldn't hurt her.
It's about 2am here. Yes, I know I should be asleep. I am tired, but who can sleep? We'll be getting up at 5am and leaving around 5:40. We are to be there at 6:15am. We will need to check in and do some pre-op things - vitals, meet with the anesthisiologist, sign another consent and hand her over. I was told we would not be allowed to take her back to the OR due to her age. Then we will wait. The prep for surgery can take about an hour. She will have numerous IVs, tubes, etc to get placed and started.
Eliana has had her last feeding before surgery. Can you pray that we won't experience delays so that she doesn't get hungry. And that if we do have delays that we will be able to give her some clear fluids.
We have several friends joining us tomorrow while we wait. My other children will be home with my parents. I am thankful for all of the support we have - here close by and many others from afar. What a gift you are to me and my family!
We are planning to take a laptop with us and will try to update as often as we are able to (if we can get a connection).
With much love,
Leslie
Saturday, April 14, 2007
Packing and preparing
Well, I'm not actually doing either yet - though I'm thinking on it and starting to make a list. I hate packing - even when it's for something fun. Packing for this seems ... I don't know ... but it's definitely not something "fun". It's like something I don't really want to think about. What will I need while I'm in the hospital with my sweet baby? I didn't even pack for her birth! I usually pack while I'm in labor (yes, I always put it off until the last moment). Eliana's labor started with me being sick - very, very sick! I was hospitalized for severe dehydration which had caused contractions. Kind of like the start of my pregnancy. 
I can grin about it now.
My heart jumps each time I look at my blog and it's past midnight. The ticker counter is one of the first things I see - after my beautiful baby's smiling face. When the count has gone day another day it always startles me. Did you notice what it says now? 1 day until open heart surgery. One day. We have been counting towards this day for awhile and now it is almost here. I'm not sure I'm ready for this. I'm not really sure that I ever would be though. How do you prepare for something like this? Pray and pray and pray some more.
Speaking of prayer, we were blessed to have 3 elders from our church come to pray with us this morning. They annointed and prayed for Eliana, her surgery, our family and more. I am thankful that these dear friends were willing to do this for us.
I know that God hears our prayers, though I do confess that I had many times early in this journey of feeling like my prayers were being ignored (I knew that they weren't) or that "NO" was the answer. It hurt to have several very specific prayers answered in ways opposite of what I'd prayed for. I know that there is no guarantee that I'll get what I want when I pray. I know that God knows better than I do. I also know that sin wages war on us each and every day. It helps us long for a new home where there is no sickness or sadness or death.
I've had so many people tell me that they are praying for us. So many! Churches, prayer chains, Bible studies, and friends all over the country and world even. People posting requests on their blogs - friends and even strangers. (If you have something posted about Eliana on your blog, I would love to know that!) Many of my sweet FIAR sisters are praying for us and many have signed up on a list so that we have prayer coverage around the clock. What a blessing that is to me that people would care enough to pray for us! It brings me to tears every time. (Yes, I'm in tears a lot these days. Some sad tears and often tears of happiness too.)
Thank you - all of you!
Just last night as we were talking with our children, Joshua seemed surprised when I said something about Eliana's heart being fixed. He asked if she was going to have her heart fixed. I said "yes". (Haven't we been talking about this? Maybe it's our recent study of the heart that made it seem more real to him?) Then he asked if they were going to have to cut her open. I again responded "yes". Then with a quavering voice and tears in his eyes he asked "Is she going to die?" With tears in my own eyes I told him that the surgery was to help her so that she could live. I don't want to be dishonest with him as there is always risk with surgery, but I also don't want to plant fears there either. I know he isn't ready to hear the details of what she'll be going through. Maybe after it's all over and she is safely home. Please pray for his tender heart - and my other children's hearts too as I know it will be hard for each of them in different ways.
We spent most of the day at home today. We had plans to be out, but circumstances changed and we felt it best to stay here. We are hoping to stay healthy. We want to be well going into Eliana's surgery. A calm day at home was a nice blessing.
I still need to pack. I don't know if I'll be staying while Eliana is in ICU. Some people have said to go home and rest as the nurse to patient ratio is really high - and Eliana will be heavily sedated at first. On the other hand it just seems wrong somehow to leave my baby. How can I just leave her there? It's not that I don't trust her care, I just don't want her to be alone. Is it just thinking that I'll be a "bad mom" if I leave her there? I know that once she is transferred to a room that I'll be with her around the clock. I'm just not sure about the first nights. I guess that hampers my knowing how to pack. I really don't know what I'm doing. And that is like so much of this journey so far - I really don't know what I'm doing much of the time.
I'm praying and doing my best. I'm trying to lean on God and learn from all of this. I have wondered what I'm supposed to be learning and had many conversations with God about all that I've gone through. I've wondered if walking through this time of fire would change me. I have told God that it would be a real shame to have gone through this and remain unchanged. I want Him to do a work in me! I want Him to show in me. I want Him to be able to use me.
Please keep praying for our family. I am thankful for your prayers, your notes and your comments of encouragment. Even though I'm not able to respond to each of you, know that your words, your efforts and your love have touched my heart deeply!
With love,
Leslie
I can grin about it now.My heart jumps each time I look at my blog and it's past midnight. The ticker counter is one of the first things I see - after my beautiful baby's smiling face. When the count has gone day another day it always startles me. Did you notice what it says now? 1 day until open heart surgery. One day. We have been counting towards this day for awhile and now it is almost here. I'm not sure I'm ready for this. I'm not really sure that I ever would be though. How do you prepare for something like this? Pray and pray and pray some more.
Speaking of prayer, we were blessed to have 3 elders from our church come to pray with us this morning. They annointed and prayed for Eliana, her surgery, our family and more. I am thankful that these dear friends were willing to do this for us.
I know that God hears our prayers, though I do confess that I had many times early in this journey of feeling like my prayers were being ignored (I knew that they weren't) or that "NO" was the answer. It hurt to have several very specific prayers answered in ways opposite of what I'd prayed for. I know that there is no guarantee that I'll get what I want when I pray. I know that God knows better than I do. I also know that sin wages war on us each and every day. It helps us long for a new home where there is no sickness or sadness or death.
I've had so many people tell me that they are praying for us. So many! Churches, prayer chains, Bible studies, and friends all over the country and world even. People posting requests on their blogs - friends and even strangers. (If you have something posted about Eliana on your blog, I would love to know that!) Many of my sweet FIAR sisters are praying for us and many have signed up on a list so that we have prayer coverage around the clock. What a blessing that is to me that people would care enough to pray for us! It brings me to tears every time. (Yes, I'm in tears a lot these days. Some sad tears and often tears of happiness too.)
Thank you - all of you!Just last night as we were talking with our children, Joshua seemed surprised when I said something about Eliana's heart being fixed. He asked if she was going to have her heart fixed. I said "yes". (Haven't we been talking about this? Maybe it's our recent study of the heart that made it seem more real to him?) Then he asked if they were going to have to cut her open. I again responded "yes". Then with a quavering voice and tears in his eyes he asked "Is she going to die?" With tears in my own eyes I told him that the surgery was to help her so that she could live. I don't want to be dishonest with him as there is always risk with surgery, but I also don't want to plant fears there either. I know he isn't ready to hear the details of what she'll be going through. Maybe after it's all over and she is safely home. Please pray for his tender heart - and my other children's hearts too as I know it will be hard for each of them in different ways.
We spent most of the day at home today. We had plans to be out, but circumstances changed and we felt it best to stay here. We are hoping to stay healthy. We want to be well going into Eliana's surgery. A calm day at home was a nice blessing.
I still need to pack. I don't know if I'll be staying while Eliana is in ICU. Some people have said to go home and rest as the nurse to patient ratio is really high - and Eliana will be heavily sedated at first. On the other hand it just seems wrong somehow to leave my baby. How can I just leave her there? It's not that I don't trust her care, I just don't want her to be alone. Is it just thinking that I'll be a "bad mom" if I leave her there? I know that once she is transferred to a room that I'll be with her around the clock. I'm just not sure about the first nights. I guess that hampers my knowing how to pack. I really don't know what I'm doing. And that is like so much of this journey so far - I really don't know what I'm doing much of the time.
I'm praying and doing my best. I'm trying to lean on God and learn from all of this. I have wondered what I'm supposed to be learning and had many conversations with God about all that I've gone through. I've wondered if walking through this time of fire would change me. I have told God that it would be a real shame to have gone through this and remain unchanged. I want Him to do a work in me! I want Him to show in me. I want Him to be able to use me.
Please keep praying for our family. I am thankful for your prayers, your notes and your comments of encouragment. Even though I'm not able to respond to each of you, know that your words, your efforts and your love have touched my heart deeply!
With love,
Leslie
Friday, April 13, 2007
Pre-Op Today
Thank you precious friends for your prayers! Thank you also for your notes here and also emails. I do appreciate hearing from you - even though I'm often not able to respond. Please know that I'm reading and thankful!
Eliana's pre-op went well today. I could tell prayers were answered as things went very smoothly and I was amazingly calm. We were able to read some scripture on the ride over to the hospital. None of those "moments" (tears/worry/panic) that I've been having really happened today. Here is a look at our day.
We're done now and can go home! We arrive home to find lots of happy people at our house. Three friends and their children are there - beading bracelets, playing and doing science lab. I'm thankful for the help of friends and the fun day my children had with them!
More details about surgery!
Eliana is scheduled to arrive at 6:15 am on Monday morning for surgery. She is the first one scheduled for that day. We are not to feed her after her midnight feeding. Dr Jaggers thought that the surgery would take about 3 hours. Since her VSD (the hole between the ventricles - the two lower chambers of the heart) is large it will require a patch about the size of a dime. (Remember her heart is just the size of her tiny fist!) The ASD is not as large and will be able to be fixed via suture.
He expected her ICU stay to be 1-2 days and the hospital stay to be 5-7 days. Much better sounding than 2 weeks! Of course all of this is dependant on how Eliana responds.
We are planning to take our laptop to the hospital and will update as we can. I'll include some information about risks that is difficult to read. For those that like to pray specifically and who can handle some of the details, I'll include them after my closing.
Thank you for your prayers for our precious little girl!
With love,
Leslie
****WARNING: Some of the following information is difficult.
Dr Jaggers told us that the success rate of this surgery is 98%. Sounds great - only I know that someone's babies are the 2%. I need not dwell on that!
She will have her sternum cut through (broken) in order to get to the heart. She will be put on a heart/lung bypass machine for a little over an hour. (In my head it makes sense that her heart will need to be stopped, but it's hard to hear that.)
There are obviously risks. Due to the size of her VSD and the location, there may be valve leakage after having to cut part of the valve. Being on the heart/lung machine causes neurological problems ( i.e. stroke) in 1-2%. There could be an abnormal heart rhthym resulting from stitches close to a pathway (don't remember the details here) which would result in the need for a pacemaker.
She may lose some of her skills after surgery and need to relearn them. Feeding will be a big one for Eliana. We expect to go home with the feeding tube and hopefully wean from it before too much longer. I am especially hoping that she will retain her smile. I just love her full face smiles! She brightens up a room with her beautiful smile.
Late and I need to go to sleep. I'm completely wiped out!
Eliana's pre-op went well today. I could tell prayers were answered as things went very smoothly and I was amazingly calm. We were able to read some scripture on the ride over to the hospital. None of those "moments" (tears/worry/panic) that I've been having really happened today. Here is a look at our day.
- 9:00am Leave home
- 9:30am Arrive and check in. Start Eliana's feeding tube. Get stats - weight, height, bp and temp. She has continued to gain weight and is up to 11 lb 9.6 ounces.
- 10:15am - Labwork. Has an blood draw from her arm. She is NOT happy about this at all and cries for a long time (for her) afterwards. Not sure what all they checked, but do know that her thyroid function came back as normal. Yippee!
- 10:20am - EKG - She is still crying and still trying to finish up her feed. She will not be consoled or distracted and it's hard to get a good reading. She has 12 leads attached to her body - most on her chest - and some fall off at various times. We do finally get a read and can leave.
- 10:45am - X-ray of her chest. She is calm now and doesn't mind this at all! She gets one x-ray from the front and one laying on her side. The tech tells us afterward that she has a lot of air in her stomach and needs a burp. We asked how she knew that and she replied that she could see it on the x-ray. (We knew it was from crying for so long - while feeding!) She asked if we would like to look at it and we said yes. She showed us the various images and we could even see her feeding tube going through her esophagus and into the stomach. Kind of neat!
- 11:20am - Meet with two nurse practioners who start to take a medical history and ask a wide variety of questions of Eliana. They also do a physical exam of her. She looks good! During this time she asks if we have a preference for Eliana's surgeon. Roger tells her Dr. Jaggers. He will be doing Eliana's surgery. (Please pray for him!)
- In the midst of meeting with the Nurse practioners, we are able to meet with Dr. Jaggers. He talks about the risks with us. I took notes so that I could remember later. One of my friends asked if it was like drinking from a firehose? Probably a fitting description. He gave us some details about Eliana's surgery and repair. I'll talk more about that in a bit. After hearing the risks explained, we had to sign a consent form for the surgery.
- 12:45pm - Walk to pediatric echo lab. Get ready there. Eliana is asleep at this point. The Dr agrees to do the echo without sedation if she is asleep. Shortly afterwards, she wakes up and we know that she will need to be sedated. See Eliana's cardiologist and talk briefly with him.
- 1:30pm - She is given chloryll hydrate (sp) via her NG tube. Nice option since everyone says that it tastes bad and it was a pretty large dose! It takes about 15 minutes for this to work. She fights it for awhile and is very fussy. I held her and bounced her until she was "out".
- 1:50pm After she is out, she is hooked up to an EKG monitor and oxygen monitor. Her O2 saturation numbers are low which I mention to the nurse. She is typically in the mid to high 90s and today was in the low 80s even going as low as 75. Since this was not typical for her, the nurse gave her oxygen. She explained that the sedation sometimes makes it difficult to breathe deeply. The oxygen helps right away and her numbers stay high during the procedure.
- 2:00pm The echo procedure is done in a darkened room. It took about 1 hour. It was interesting to see the heart and the valves moving. We were also able to see the holes in her heart and the flow of blood throgh the holes.
- 3:00pm - I talk to the nurse about the red irritated places under Eliana's adhesive. I didn't want to remove te adhesive (or replace the tube) but it seemed to be the best choice for Eliana. I would love for it to have time to heal before it is covered again during surgery. I remove the tube and insert a new one whlle she is still sedated! I like doing it that way. (#14 for me) Then we tried to wake up Eliana to see if she is coming come out of sedation alright. Took a cold washcloth on her face to finally see her eyes. She is fussy - hungry since she missed her noon feeding. She takes about an ounce via bottle and then falls asleep again.
We're done now and can go home! We arrive home to find lots of happy people at our house. Three friends and their children are there - beading bracelets, playing and doing science lab. I'm thankful for the help of friends and the fun day my children had with them!
More details about surgery!
Eliana is scheduled to arrive at 6:15 am on Monday morning for surgery. She is the first one scheduled for that day. We are not to feed her after her midnight feeding. Dr Jaggers thought that the surgery would take about 3 hours. Since her VSD (the hole between the ventricles - the two lower chambers of the heart) is large it will require a patch about the size of a dime. (Remember her heart is just the size of her tiny fist!) The ASD is not as large and will be able to be fixed via suture.
He expected her ICU stay to be 1-2 days and the hospital stay to be 5-7 days. Much better sounding than 2 weeks! Of course all of this is dependant on how Eliana responds.
We are planning to take our laptop to the hospital and will update as we can. I'll include some information about risks that is difficult to read. For those that like to pray specifically and who can handle some of the details, I'll include them after my closing.
Thank you for your prayers for our precious little girl!
With love,
Leslie
****WARNING: Some of the following information is difficult.
Dr Jaggers told us that the success rate of this surgery is 98%. Sounds great - only I know that someone's babies are the 2%. I need not dwell on that!
She will have her sternum cut through (broken) in order to get to the heart. She will be put on a heart/lung bypass machine for a little over an hour. (In my head it makes sense that her heart will need to be stopped, but it's hard to hear that.)
There are obviously risks. Due to the size of her VSD and the location, there may be valve leakage after having to cut part of the valve. Being on the heart/lung machine causes neurological problems ( i.e. stroke) in 1-2%. There could be an abnormal heart rhthym resulting from stitches close to a pathway (don't remember the details here) which would result in the need for a pacemaker.
She may lose some of her skills after surgery and need to relearn them. Feeding will be a big one for Eliana. We expect to go home with the feeding tube and hopefully wean from it before too much longer. I am especially hoping that she will retain her smile. I just love her full face smiles! She brightens up a room with her beautiful smile.
Late and I need to go to sleep. I'm completely wiped out!
Thursday, April 12, 2007
Another day closer ...
Hmmm ... where to start with today. It has been a busy one for sure.
I had a meeting at the hospital with a Child Life Specialist. She talked with me about what would be happening with Eliana during her pre-op and surgery. She took us around the hospital to see the various room, gave me a lot of hand-out information and answered questions. It was all helpful and good - but also hard. A friend went with me and took notes. It was helpful to have her do that for me so I could focus on listening and on Eliana.
When I think of what is going to happen in the abstract, it isn't so difficult. When I think about what is going to be happening to Eliana, my baby girl, then it can be hard! It catches me by surprise sometimes too. I'll be doing fine and then it will hit me. It could be a comment or a thought. Today when we were in the waiting area for surgery, she told me about the timeline of surgery and how someone would come out to say "Surgery has begun". It hit me then and I just started to tear up. Seeing all of the anxious families there waiting ... and knowing it would be us soon. All the waiting and waiting ... and then it will happen.
Tomorrow will be a busy day for us. We leave early in the morning to go to Duke. It is Eliana's pre-op day. We expect to do the following things tomorrow
A lot of testing for our little girl. Blood work has been difficult in the past. I know it hurts as they have to squeeze and squeeze to get the blood out until it leaves a bruise. She hasn't been sedated before so this will be a new experience for us too. Please pray that the tests would go smoothly, not be too painful for Eliana and that the doctors would get the information that they need.
We will be finding out who her surgeon is tomorrow (there are two at Duke) as well as the time of her surgery. We will be meeting with the surgeon unless there is some unforeseen emergency. I am hoping that this won't happen so that we'll have the chance to talk and ask questions. I think we'll also be signing some consent forms. I've been warned that this is difficult as they have to discuss all of the potential risks of surgery. I've also been told that the form is standard and not specific to Eliana. Even knowing that, it will be hard to listen to mortality statistics. I keep reminding myself to trust God in all of this! He loves my daughter more than I do.
As you can tell, it is going to be a long day. We'll be taking Eliana's feeding pole/bag/equipment with us. I should probably go pack all that I can tonight. Please pray for this appointment tomorrow. We'll have a lot more information about surgery to share after this day.
*******
I wanted to post an update on Wholehearted bracelet sales. This has really turned into a project for the whole family! We have been busy beading and working together. Christopher has given many hours and Joshua and Isaiah have just begun helping out. Roger also helps out in the evenings. We have needed all the hands we could get to keep up with the demand. It's a great problem to have.
We are also receiving much support from friends too - from helping to bead bracelets to buying bead supplies. We are thankful to all of them for their contributions for it wouldn't be possible without them!
Rebecca went in to work with her Daddy again and had great sales! She has also received several donations this week. In addition to friends, she received a sweet note from a stranger that had been given one of Rebecca's bracelets as a gift. When she heard the story behind the bracelets she wanted to support Rebecca's efforts.
Tonight we were counting up her money/totals to see how much she has raised. As we were doing this, the children were all coming in and out. Joshua walked out and then came back with a $10 bill. He said that he wanted to make a donation too. Is that not the sweetest thing?! That is a lot of money for a 7-year old! What a precious heart. He has often commented recently on Rebecca and her heart for others. I think he has one too!
Total money raised thus far ... $2174.00
It's late and I'm going to try to go to bed soon. If you haven't been here in the last 24 hours, check out the two entries prior to this for some photos and a "button" you can add to your blog if you want to.
Thank you for your prayers, encouragment and support! I am richly blessed!
With love,
Leslie
I had a meeting at the hospital with a Child Life Specialist. She talked with me about what would be happening with Eliana during her pre-op and surgery. She took us around the hospital to see the various room, gave me a lot of hand-out information and answered questions. It was all helpful and good - but also hard. A friend went with me and took notes. It was helpful to have her do that for me so I could focus on listening and on Eliana.
When I think of what is going to happen in the abstract, it isn't so difficult. When I think about what is going to be happening to Eliana, my baby girl, then it can be hard! It catches me by surprise sometimes too. I'll be doing fine and then it will hit me. It could be a comment or a thought. Today when we were in the waiting area for surgery, she told me about the timeline of surgery and how someone would come out to say "Surgery has begun". It hit me then and I just started to tear up. Seeing all of the anxious families there waiting ... and knowing it would be us soon. All the waiting and waiting ... and then it will happen.
Tomorrow will be a busy day for us. We leave early in the morning to go to Duke. It is Eliana's pre-op day. We expect to do the following things tomorrow
- Sedated echocardiagram
- EKG
- Chest X-ray
- Blood work
- Physical exam
- Meet the surgeon(s)
- See our cardiologist
A lot of testing for our little girl. Blood work has been difficult in the past. I know it hurts as they have to squeeze and squeeze to get the blood out until it leaves a bruise. She hasn't been sedated before so this will be a new experience for us too. Please pray that the tests would go smoothly, not be too painful for Eliana and that the doctors would get the information that they need.
We will be finding out who her surgeon is tomorrow (there are two at Duke) as well as the time of her surgery. We will be meeting with the surgeon unless there is some unforeseen emergency. I am hoping that this won't happen so that we'll have the chance to talk and ask questions. I think we'll also be signing some consent forms. I've been warned that this is difficult as they have to discuss all of the potential risks of surgery. I've also been told that the form is standard and not specific to Eliana. Even knowing that, it will be hard to listen to mortality statistics. I keep reminding myself to trust God in all of this! He loves my daughter more than I do.
As you can tell, it is going to be a long day. We'll be taking Eliana's feeding pole/bag/equipment with us. I should probably go pack all that I can tonight. Please pray for this appointment tomorrow. We'll have a lot more information about surgery to share after this day.
*******
I wanted to post an update on Wholehearted bracelet sales. This has really turned into a project for the whole family! We have been busy beading and working together. Christopher has given many hours and Joshua and Isaiah have just begun helping out. Roger also helps out in the evenings. We have needed all the hands we could get to keep up with the demand. It's a great problem to have.
We are also receiving much support from friends too - from helping to bead bracelets to buying bead supplies. We are thankful to all of them for their contributions for it wouldn't be possible without them!
Rebecca went in to work with her Daddy again and had great sales! She has also received several donations this week. In addition to friends, she received a sweet note from a stranger that had been given one of Rebecca's bracelets as a gift. When she heard the story behind the bracelets she wanted to support Rebecca's efforts.
Tonight we were counting up her money/totals to see how much she has raised. As we were doing this, the children were all coming in and out. Joshua walked out and then came back with a $10 bill. He said that he wanted to make a donation too.
Is that not the sweetest thing?! That is a lot of money for a 7-year old! What a precious heart. He has often commented recently on Rebecca and her heart for others. I think he has one too!Total money raised thus far ... $2174.00
It's late and I'm going to try to go to bed soon. If you haven't been here in the last 24 hours, check out the two entries prior to this for some photos and a "button" you can add to your blog if you want to.
Thank you for your prayers, encouragment and support! I am richly blessed!
With love,
Leslie
Wednesday, April 11, 2007
Eyes of a Child
I've been pondering this blog entry for quite some time. I'm unsure how much of my random thoughts - both positive and not so positive to include. For example, did you know that over 90% of children with Down Syndrome are aborted? Never even given a chance at life. That is so very sad to me. Yes, this is a hard road, but so is being a parent. We don't know what lies ahead with any of our children and yet we love them and would do anything for them. I've never thought so much about how others view us as I have recently. It's a new perspective to me on how things are seen.
I've heard it said that the eyes are the window to the soul. Pondering on this reminds me of the words to a song ... "Open the eyes of my heart Lord, open the eyes of my heart. I want to see you." What are your eyes seeing? What do others see in your eyes? I hope my eyes show love, acceptance and a faith in our Father
When I first saw my daughter's eyes ... I knew. I had not had prenatal testing done and it was quite a surprise to me at birth. Initially it was this physical feature that I noticed most and had the hardest time with seeing it as different from my other children. It was a reminder to me of things to come or rather things that might come to pass or things that I feared. When I shared this with a friend, she told me that her daughter has said that she loved Eliana's eyes as they were such a beautiful shape. This brought tears to my eyes and a knowledge to my heart that God is so in the details of my life that He comforts me with a child bringing the very message that my heart needed to hear.
I've learned a lot since Eliana arrived. Some days it seems like a short while ago that I was pregnant and life was good and happy and "normal". Other times, it seems a lifetime ago that I wasn't crying about so many different things. This has been so very different from the newborn time I've had with my others - a time that I LOVE. This time has been hard. Yet, she needs just what the others did - lots of love, lots of holding, lots of time to get to know us. It's been the same in some ways too. I LOVE my little girl so very much. I love holding her, examining her tiny little fingers and toes and the thrill of having her smile at me is the best!
So many comments have been made since Eliana arrived. I've received tremendous support and love from so many people. So many that have reached out (and continue to do so) in love to me that I can't help but feel overwhelmed in a very good way. Other comments have left their marks in other ways. Very sad ways that bring tears of sorrow or anger. Most of these are spoken from a lack of understanding and I try to remember that so that I don't hold on to the hurt. I've never appreciated so intensely the power of words until the last couple of months. It has been hard to be the one to have to extend grace over and over when people say things that just hurt. I know that this is right, but it still difficult.
I sometimes wonder how Eliana will be viewed. Will people see her and the gifts she has been given or a syndrome and the things she lacks? I know some will see the problems only. I've already had comments and questions that cut to the core. After a particularly difficult conversation, I was talking with God about how very sad this made me and was blessed the next day with an email from a friend.
This is what she wrote. Yesterday during praise singing at church, we were singing "Shout to the Lord."
I had been having one of those "I have children and we are late to church again" mornings, and was closing my eyes during the song trying to focus.
When we sang the part about "the wonders of your mighty love," that sweet picture of Eliana that you posted flashed into my mind. It was a sudden and strong image.
I continued to think of her, and pray for y'all as we sang, "I sing for joy at the work of your hands."
I just wanted to share with you that you were brought to my mind and my prayer yesterday, and I was singing for joy as I thought of the "wonder of God's mighty love" whom you are blessed to cuddle. Thanks Robin!
I do know how Eliana is viewed by her family and friends. She is a blessed little girl to have so many people that love her and are praying for her. I haven't shared much about my younger children and their reaction to Eliana. They are just smitten with her. It is so sweet to see them with her - loving her for who she is - not wishing she were different in any way. What is it that their eyes see? A precious little baby. A sister. Someone to love.
My 2yo, Daniel, loves to touch on her. He thinks pumps (feeding and breastfeeding) are a normal part of having an infant. It wasn't that long ago that he was just a baby. Here are some of his recent comments.
"Eliana is cute!"
"She has eye." (Said while pointing and I agree.) "She has ear." (Same response from me.) " Why she have tube?" (Hmmm ... maybe he does know it's different.)
Daniel is a delightfully funny and loving little fellow. He LOVES to laugh! Here's a photo of him that ought to give you a laugh.
Looking like the younger photos of his little sister!
Isaiah (5) also loves Eliana. He always greets her when he sees her or me walking in a room with her. Like Daniel, he seems to have accepting pumps as a normal part of life. No big deal. He and Daniel both ask to hold her and love being with her.
"I love Eliana!" An unsolicited and emphatic statement. Wow, does this melt your heart!
Joshua (7) loves to hold Eliana, look at her and love on her.
"Do you think she is more beautiful or cute?" This is asked of anyone that will answer.
"She is the cutest baby girl I have ever seen!"
Daniel is on the left and Joshua on the right.
I love seeing my boys line up at her crib to look at her or talk to her. I often come in to find one of them with her. Sometimes all 3 of them are in a row just looking at her. It's really cute!
Rebecca (11) has recently been singing songs about Eliana. It's sweet to hear her words of love and acceptance.
"If you don't get to know her, it is your loss."
"I love you. You are my sister."
Christopher (14) often comes in and scoops her up from the crib whether she is awake or not. He likes holding her, talking with her and loving on her.
"I love her big beautiful eyes."
My friend Catherine with Christopher.
I was recently sent a link to a photo montage that really touched my heart. The pictures are beautiful and so is the song that goes with it. Make sure you turn up the volume so that you can hear the words.
http://www.giftsds.segullah.org/photo_montage.htm
Eliana is a gift from God to us! I know that she will be used mightily of God in so many ways - she already has.
One of my friends shared these thoughts about Eliana. (Thank you Ronette!)
Eliana is perfect! Look at what she has done for the Lord in her 3 1/2 months! She has driven Christians to their knees in prayer. She has drawn those weak in faith closer to the Lord. She has awakened such compassion in her older sister that others are going to benefit greatly. She has served the Lord more mightily in her short little life than many do in years and years! You are so blessed to have such a one in your family.
How can you look at this precious face (at the top of the blog) and see anything but love? She is not a mistake, but is a gift. A child made in the very image of God. A child to be loved and treasured. Our beautiful little girl.
I've heard it said that the eyes are the window to the soul. Pondering on this reminds me of the words to a song ... "Open the eyes of my heart Lord, open the eyes of my heart. I want to see you." What are your eyes seeing? What do others see in your eyes? I hope my eyes show love, acceptance and a faith in our Father
When I first saw my daughter's eyes ... I knew. I had not had prenatal testing done and it was quite a surprise to me at birth. Initially it was this physical feature that I noticed most and had the hardest time with seeing it as different from my other children. It was a reminder to me of things to come or rather things that might come to pass or things that I feared. When I shared this with a friend, she told me that her daughter has said that she loved Eliana's eyes as they were such a beautiful shape. This brought tears to my eyes and a knowledge to my heart that God is so in the details of my life that He comforts me with a child bringing the very message that my heart needed to hear.
I've learned a lot since Eliana arrived. Some days it seems like a short while ago that I was pregnant and life was good and happy and "normal". Other times, it seems a lifetime ago that I wasn't crying about so many different things. This has been so very different from the newborn time I've had with my others - a time that I LOVE. This time has been hard. Yet, she needs just what the others did - lots of love, lots of holding, lots of time to get to know us. It's been the same in some ways too. I LOVE my little girl so very much. I love holding her, examining her tiny little fingers and toes and the thrill of having her smile at me is the best!
So many comments have been made since Eliana arrived. I've received tremendous support and love from so many people. So many that have reached out (and continue to do so) in love to me that I can't help but feel overwhelmed in a very good way. Other comments have left their marks in other ways. Very sad ways that bring tears of sorrow or anger. Most of these are spoken from a lack of understanding and I try to remember that so that I don't hold on to the hurt. I've never appreciated so intensely the power of words until the last couple of months. It has been hard to be the one to have to extend grace over and over when people say things that just hurt. I know that this is right, but it still difficult.
I sometimes wonder how Eliana will be viewed. Will people see her and the gifts she has been given or a syndrome and the things she lacks? I know some will see the problems only. I've already had comments and questions that cut to the core. After a particularly difficult conversation, I was talking with God about how very sad this made me and was blessed the next day with an email from a friend.
This is what she wrote. Yesterday during praise singing at church, we were singing "Shout to the Lord."
I had been having one of those "I have children and we are late to church again" mornings, and was closing my eyes during the song trying to focus.
When we sang the part about "the wonders of your mighty love," that sweet picture of Eliana that you posted flashed into my mind. It was a sudden and strong image.
I continued to think of her, and pray for y'all as we sang, "I sing for joy at the work of your hands."
I just wanted to share with you that you were brought to my mind and my prayer yesterday, and I was singing for joy as I thought of the "wonder of God's mighty love" whom you are blessed to cuddle. Thanks Robin!
I do know how Eliana is viewed by her family and friends. She is a blessed little girl to have so many people that love her and are praying for her. I haven't shared much about my younger children and their reaction to Eliana. They are just smitten with her. It is so sweet to see them with her - loving her for who she is - not wishing she were different in any way. What is it that their eyes see? A precious little baby. A sister. Someone to love.
My 2yo, Daniel, loves to touch on her. He thinks pumps (feeding and breastfeeding) are a normal part of having an infant. It wasn't that long ago that he was just a baby. Here are some of his recent comments.
"Eliana is cute!"
"She has eye." (Said while pointing and I agree.) "She has ear." (Same response from me.) " Why she have tube?" (Hmmm ... maybe he does know it's different.)
Daniel is a delightfully funny and loving little fellow. He LOVES to laugh! Here's a photo of him that ought to give you a laugh.
Looking like the younger photos of his little sister! Isaiah (5) also loves Eliana. He always greets her when he sees her or me walking in a room with her. Like Daniel, he seems to have accepting pumps as a normal part of life. No big deal. He and Daniel both ask to hold her and love being with her.
"I love Eliana!" An unsolicited and emphatic statement. Wow, does this melt your heart!
Joshua (7) loves to hold Eliana, look at her and love on her.
"Do you think she is more beautiful or cute?" This is asked of anyone that will answer.
"She is the cutest baby girl I have ever seen!"
Daniel is on the left and Joshua on the right.I love seeing my boys line up at her crib to look at her or talk to her. I often come in to find one of them with her. Sometimes all 3 of them are in a row just looking at her. It's really cute!
Rebecca (11) has recently been singing songs about Eliana. It's sweet to hear her words of love and acceptance.
"If you don't get to know her, it is your loss."
"I love you. You are my sister."
Christopher (14) often comes in and scoops her up from the crib whether she is awake or not. He likes holding her, talking with her and loving on her.
"I love her big beautiful eyes."
My friend Catherine with Christopher.I was recently sent a link to a photo montage that really touched my heart. The pictures are beautiful and so is the song that goes with it. Make sure you turn up the volume so that you can hear the words.
http://www.giftsds.segullah.org/photo_montage.htm
Eliana is a gift from God to us! I know that she will be used mightily of God in so many ways - she already has.
One of my friends shared these thoughts about Eliana. (Thank you Ronette!)
Eliana is perfect! Look at what she has done for the Lord in her 3 1/2 months! She has driven Christians to their knees in prayer. She has drawn those weak in faith closer to the Lord. She has awakened such compassion in her older sister that others are going to benefit greatly. She has served the Lord more mightily in her short little life than many do in years and years! You are so blessed to have such a one in your family.
How can you look at this precious face (at the top of the blog) and see anything but love? She is not a mistake, but is a gift. A child made in the very image of God. A child to be loved and treasured. Our beautiful little girl.
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