I'm not sure who will see this - but hopefully some of you will! It is currently about 11:45 EST. The nurse told me earlier that they will need to do a blood draw tomorrow. *sigh* My sweet precious baby is a VERY hard draw.
For her surgery, they were not able to get IVs in - or not enough - and the surgeon had to cut her little wrist to put in the IV. I can see where she has been poked ALL over her little body - feet, wrists, hands, neck, groin - some multiple times and sides. Even today her new IV was put into her head. I'm not sure where she has left to poke.
I've asked the nurse to please find out if they can find the BEST person available for doing the blood draw. Please join me in praying for this. I am praying for a successful FIRST stick on her so that they don't have to try multiple times.
Also, could you pray for her pain. She woke up at 9pm and just wasn't herself. I realized that her pain meds had worn off and asked for more. She fell asleep shortly after that without eating any from the bottle. She has been sleeping well since then.
Still working on adding photos. Thank you Leanne for your offer of help. I'll send them to you if I can't get them here! I'm not going to try too long - just haven't had time to get to it.
Gotta go - her IV has come out! Please pray
ETA: Update at 1:00am Then nurse completely removed the IV from her head. I held gauze on the site to help stop the bleeding. She cut some of her hair to try to remove the bandage. (It was taped pretty well to her hair - had come loose from her head. We think that is why it came out, but also could have been from me moving her around. Even though I tried to be careful it's tough with so many leads comeing from her - 7 - which is MUCH less than yesterday!) The nurse asked if I minded her cutting her hair to remove the bandages and I told her to do what she needed to do. She cut a little as she was trying to get to the IV and stop the blood. Then she worked to just remove it from the tape so Eliana wouldn't have a big chunk of hair missing. Isn't that sweet?!
I hated the thought of them having to reinsert an IV. There just isn't a place that hasn't been poked unless there is a spot on the other side of her head? When she spoke with one of the doctors, she said the IV didn't have to go back in! She is to get her meds by mouth and hopefully is well-hydrated since she is getting her feeds now. Praise God!
Thank you for those of you that saw this and prayed! This was a great answer. Still praying for the next blood draw!
Tuesday, April 17, 2007
Tues 17 April - 1 day after surgery
***I've written this and updated it several times. I'm finishing the entry now at 8:15 EST. If I add more here, I'll change the time.
I've spent hours trying to find a moment to update ya'll, but it's been just too busy! I was thinking earlier this morning that I would just do one entry and add to it as the day went - maybe making each new entry a different color. Well, it looks like you are going to get LOT of news at once!
Roger and I drove over to the hospital around 10am - later than I had hoped, but it's always hard to get out of the house. I had called to check on Eliana and heard that she was doing great! They told me that she had the chest tube removed by her surgeon. This is great as they kept telling me that it was painful for her. She also had her catheter removed and her arterial line removed. I was told that she would probably be moved to a room today as they needed the bed space for another heart baby.
When I arrived they were trying to put in another IV so that they could remove her central line. This needed to be done before she could be moved to a room. I waited while they put this in and Roger joined me in the waiting room.
When we were allowed back, we were warned that the new IV had been put into her head. (Not surprising since they apparently tried almost every other place yesterday in an attempt to put in an IV and then resorted to the surgeon doing a cut-down.) They covered the IV with 1/2 of a small cup - and her pink bow! It really helps the look. She had been moved to a private room with a new nurse just for her. I wish we'd had this yesterday so we could have spent more time with her.
The nurse asked if I minded being there while she removed the central line from her groin and inserted her feeding tube. I told I didn't mind at all. I didn't have to look if it bothered me. She had been given 2 doses of morphine this morning for the removal of the chest tube and insertion of the IV so she was a little groggy. As the nurse was removing the stitches from the central line she asked if I was a nurse. LOL No, just a mom that has had to learn a few new things over the last couple of months.
Eliana's vital signs were good. She is still on oxygen and her sat levels are high. (good news) We were told that she would be moving to a regular room this morning instead of a step-down room. (Lower nurse ratio on the regular floor. We were also assured that the move was because she was doing well, not because they needed the room.
Our pediatrician called while we were finishing up in the NICU. She commented that Eliana was making this "look like she had gone in for a wart removal". It's amazing to me how well she is doing! When they readied her bed, tubes, machines, etc, Eliana was wheeled down the halls to the pediatric ward and her room. Because she has a bigger bed, there isn't a regular bed for me, just a pull out chair. It will be fine as I'm just happy to be with her!
So many people and so many comments I want to remember and share!!! I'll do my best here.
We saw a doctor shortly after arriving in our room. She talked about how Eliana was doing very well. She had heard about how cute Eliana was from another nurse.
She was encouraging and kind.
It's 6:20 now and I will add to this later. Need to go try to feed my little girl. Bottle too warm so I'll add a bit more.
So many God moments today. Again so much evidence that He is working all things out for good - above and beyond what we have expected!
One of the anesthesiologists stopped by. What a surprise to see him! I shared with him how I appreciated how nice he was to us. He commented that they were always nice. I shared with him my memories of how tender, calm and kind they were with both Eliana and us. Of the memory of them walking of with her and how it helped to start a really stressful time in a positive way. He said that he appreciated that and that though he hadn't experienced this that he did his best to help. I know that God placed these men in our lives and am thankful for them!
Met with a second doctor. When she walked in, she asked about the church we attended. We confirmed it was the one she asked about and she shared that she had been in church on Sunday when they prayed for Eliana! She told me that she had ordered another echo for Eliana. She had one yesterday after surgery and her heart looked great!!! I asked if she would have to have a number of echos while she was here. She replied that she needed one more before she went home. I then asked if we might be going home tomorrow. She said that possibly tomorrow or the following day!!! I was shocked! She is definitely on the fast track! What a miraculous healing is occuring in our little girl.
An OT (Occupational therapist) and speech&feeding therapist came by at 3pm to help with her feeding. This was to be her first oral feeding since surgery. I told her that prior to surgery we try oral feedings if she is awake. She will take on average 1 ounce. Often less and very infrequently more. She took 2 ounces! She was really hungry too. She started coughing some during the feeding - a productive sounding cough. She clearly has some fluid in her lungs which they said was normal after surgery. They also recommended she get speech/OT therapy started. The feeding recommendation for now is that I try to oral feed her every three hours (still skipping the 3am!) for up to 30 minutes then give the rest via tube.
Roger went home and brought the 4 oldest children up to visit their sister. They were all glad to see her and very curious about all of her lines, tubes and "owies". I am glad they were able to see her! She even smiled her first good smile at Christopher! It was soooo good to see that! I have prayed for her smile and missed seeing it.
While they were here, Roger ran into our cardiologist in the hallway. He did a double take as he was surprised to see Roger here. He wondered if he was here because the surgery had been cancelled yesterday and was very surprised to hear that she'd had her surgery and already been moved to the floor! He came into to visit with us. Talked to Rebecca about her bracelets. I asked a question (dont remember what it was) and he told us that this was just a personal visit and not a professional one. I love our doctors! Isn't it neat that he would just visit with us! He again told us that he thought we'd get out of here faster since we are local and it's easier to follow-up with Eliana and also because we have already done the feeding tube.
Eliana's 6pm feeding was great. I woke her up and was surprised she was ready to eat. It's been a long time since we've had to wake her to eat - and then she usually didn't want to. She took 98 ml - that's just over 3 ounces!!! Almost her complete feeding. Only 8ml by tube. Oh, happy tears I cried as she was eating and eating and eating.
Prayers for now would include the following:
That's all I can think of now - though this is probably long enough!!! We have some photos that I will try to figure out how to link. They are all from yesterday. Some are pre-op and others are post-op. Please be warned that some of the pictures are difficult!!! Especially if your children are viewing with you.
Thank you so much for your continued prayers. It has made a huge difference and I love being able to share with people here the goodness of God in the midst of all that Eliana has been through.
With love,
Leslie
I've spent hours trying to find a moment to update ya'll, but it's been just too busy! I was thinking earlier this morning that I would just do one entry and add to it as the day went - maybe making each new entry a different color. Well, it looks like you are going to get LOT of news at once!
Roger and I drove over to the hospital around 10am - later than I had hoped, but it's always hard to get out of the house. I had called to check on Eliana and heard that she was doing great! They told me that she had the chest tube removed by her surgeon. This is great as they kept telling me that it was painful for her. She also had her catheter removed and her arterial line removed. I was told that she would probably be moved to a room today as they needed the bed space for another heart baby.
When I arrived they were trying to put in another IV so that they could remove her central line. This needed to be done before she could be moved to a room. I waited while they put this in and Roger joined me in the waiting room.
When we were allowed back, we were warned that the new IV had been put into her head. (Not surprising since they apparently tried almost every other place yesterday in an attempt to put in an IV and then resorted to the surgeon doing a cut-down.) They covered the IV with 1/2 of a small cup - and her pink bow! It really helps the look. She had been moved to a private room with a new nurse just for her. I wish we'd had this yesterday so we could have spent more time with her.
The nurse asked if I minded being there while she removed the central line from her groin and inserted her feeding tube. I told I didn't mind at all. I didn't have to look if it bothered me. She had been given 2 doses of morphine this morning for the removal of the chest tube and insertion of the IV so she was a little groggy. As the nurse was removing the stitches from the central line she asked if I was a nurse. LOL No, just a mom that has had to learn a few new things over the last couple of months.
Eliana's vital signs were good. She is still on oxygen and her sat levels are high. (good news) We were told that she would be moving to a regular room this morning instead of a step-down room. (Lower nurse ratio on the regular floor. We were also assured that the move was because she was doing well, not because they needed the room.
Our pediatrician called while we were finishing up in the NICU. She commented that Eliana was making this "look like she had gone in for a wart removal". It's amazing to me how well she is doing! When they readied her bed, tubes, machines, etc, Eliana was wheeled down the halls to the pediatric ward and her room. Because she has a bigger bed, there isn't a regular bed for me, just a pull out chair. It will be fine as I'm just happy to be with her!
So many people and so many comments I want to remember and share!!! I'll do my best here.
We saw a doctor shortly after arriving in our room. She talked about how Eliana was doing very well. She had heard about how cute Eliana was from another nurse.
She was encouraging and kind.It's 6:20 now and I will add to this later. Need to go try to feed my little girl. Bottle too warm so I'll add a bit more.
So many God moments today. Again so much evidence that He is working all things out for good - above and beyond what we have expected!
One of the anesthesiologists stopped by. What a surprise to see him! I shared with him how I appreciated how nice he was to us. He commented that they were always nice. I shared with him my memories of how tender, calm and kind they were with both Eliana and us. Of the memory of them walking of with her and how it helped to start a really stressful time in a positive way. He said that he appreciated that and that though he hadn't experienced this that he did his best to help. I know that God placed these men in our lives and am thankful for them!
Met with a second doctor. When she walked in, she asked about the church we attended. We confirmed it was the one she asked about and she shared that she had been in church on Sunday when they prayed for Eliana! She told me that she had ordered another echo for Eliana. She had one yesterday after surgery and her heart looked great!!! I asked if she would have to have a number of echos while she was here. She replied that she needed one more before she went home. I then asked if we might be going home tomorrow. She said that possibly tomorrow or the following day!!! I was shocked! She is definitely on the fast track! What a miraculous healing is occuring in our little girl.
An OT (Occupational therapist) and speech&feeding therapist came by at 3pm to help with her feeding. This was to be her first oral feeding since surgery. I told her that prior to surgery we try oral feedings if she is awake. She will take on average 1 ounce. Often less and very infrequently more. She took 2 ounces! She was really hungry too. She started coughing some during the feeding - a productive sounding cough. She clearly has some fluid in her lungs which they said was normal after surgery. They also recommended she get speech/OT therapy started. The feeding recommendation for now is that I try to oral feed her every three hours (still skipping the 3am!) for up to 30 minutes then give the rest via tube.
Roger went home and brought the 4 oldest children up to visit their sister. They were all glad to see her and very curious about all of her lines, tubes and "owies". I am glad they were able to see her! She even smiled her first good smile at Christopher! It was soooo good to see that! I have prayed for her smile and missed seeing it.
While they were here, Roger ran into our cardiologist in the hallway. He did a double take as he was surprised to see Roger here. He wondered if he was here because the surgery had been cancelled yesterday and was very surprised to hear that she'd had her surgery and already been moved to the floor! He came into to visit with us. Talked to Rebecca about her bracelets. I asked a question (dont remember what it was) and he told us that this was just a personal visit and not a professional one. I love our doctors! Isn't it neat that he would just visit with us! He again told us that he thought we'd get out of here faster since we are local and it's easier to follow-up with Eliana and also because we have already done the feeding tube.
Eliana's 6pm feeding was great. I woke her up and was surprised she was ready to eat. It's been a long time since we've had to wake her to eat - and then she usually didn't want to. She took 98 ml - that's just over 3 ounces!!! Almost her complete feeding. Only 8ml by tube. Oh, happy tears I cried as she was eating and eating and eating.
Prayers for now would include the following:
- Continued recovery for Eliana in all areas and that she would remain healthy!
- Ability to breathe and have good oxygen levels without an oxygen pump.
- Ability to eat well orally and maintain good oxygen levels while doing this.
- Wisdom for all of her care givers.
- Wisdom for us as we try to ask questions and learn all that we need to know about Eliana's care.
- Health for our family.
That's all I can think of now - though this is probably long enough!!! We have some photos that I will try to figure out how to link. They are all from yesterday. Some are pre-op and others are post-op. Please be warned that some of the pictures are difficult!!! Especially if your children are viewing with you.
Thank you so much for your continued prayers. It has made a huge difference and I love being able to share with people here the goodness of God in the midst of all that Eliana has been through.
With love,
Leslie
Monday, April 16, 2007
It's 10:45pm
Can it really still be the same day? Even tonight my 7yo commented that he hadn't seen Eliana for 2 days. I told him that he had seen her last night and reminded him of how we had prayed over her. He said it felt like a lot longer. Boy, did I agree!
Tonight is hard. My Mom and I drove back over to the hospital to visit Eliana tonight. When we got there we found out that the other baby in the room was having a "procedure" and we couldn't go in. I was so sad to hear that. The nurse told us that it would be at least an hour. It was already about 8:30 or 8:45 at this time.
I asked how she was doing and the nurse said she was doing great! She thinks that she'll be moved to the floor tomorrow! For this reason, she encouraged me to go home and sleep. I want to sleep, but I also want to be with my baby! I've never had to leave a baby before. At least when she was in the NICU I was in the same building and could go in ANY time I wanted to. The PICU is very different - maybe too that it's a different hospital. I really don't know.
The nurse told us she would let us go in to see Eliana for "1 minute" if we wanted. I of course said yes! She had Mom and I put on masks and then we went to see our little girl. She was asleep and looked well - well, as good as it gets following major surgery and with many tubes and wires still attached!
I stroked her skin & hair and talked with her. I wanted to kiss her, but the mask made it difficult to do this. Our visit was very short - much too short for me.
I miss my little girl! I want to hold her and love on her so very much. My 7yo today told me that he thought he probably missed her more than I did as it had been longer since he's seen her. Sweet boy - sweet thoughts - but I don't agree with this statement.
So many thoughts swirling through my head. Exactly 4 months ago we welcomed this little girl into the world. She was in ICU then too. My emotions were a complete wreck! I wish I had started this blog then as the struggle was overwhelming to me then and it has helped greatly to write and share my heart. I was so overcome with grief over the struggles and difficulties that we were facing then and going to face in the future. How I have grown to appreciate so much about our little girl that I love so very much. She is a precious gift!
Roger saw the attending anesthesiologist (Dr. Schulman) again this afternoon by chance. When he recognized Roger he broke into a big smile and said "She did great!". He and the other dr were a sweet gift this morning. I have a very vivid image of the two of them taking my little girl. Dr. Schulman thanked me for letting him have my little girl when I placed her in his arms. He conveyed that it was a privilege for him to be taking my little girl! He seemed to really appreciate how precious she is to us! The two doctors then turned to walk to the OR. Dr Schulman had Eliana cradled in his arms - just the way that I hold her. I watched them walk down the hall talking to each other in an easy comfortable way. All the while, I could see my precious Eliana's head and her hair bobbing with each step. I remember watching them walk towards a window as the day was just beginning and then turn the corner toward the OR. I remember wanting this image to be saved in my memory. It was a calm, sweet departure.
I ran into the surgeon and nurse practioner outside of Eliana's room this afternoon. I asked how she was doing, though they obviously had not yet been in her room as I was just leaving it. They both thought she was doing great! I also saw the other anesthesiologist in the hall and we exchanged smiles.
I found out that Eliana was on the heart-lung bypass today from 8:50 until 10:15.
We continue to be blessed by friends - one who arrived shortly after we did today and spent most of the day there with us. Her dh took off from work so that she could be with us! This is a gal that I don't know very well - yet. Her children have had multiple surgeries and she really understands the stress of it all and was willing to be there for us through it all. She frequently stopped to pray over specific things and to offer praises too. She was watching Eliana as I was talking with her this afternoon and said "Did you see that? She tried to smile at you!". I didn't see it and am so glad she did.
I'm so thankful for the friends that were able to be with us physically today bringing food, comfort, hugs, tears, praises and laughter too! It made the day much easier having support right there. I'm thankful for my parents for being with my other children and having a fun day with them. I'm thankful for the many, many, many who have prayed for us so faithfully. It continues to warm my heart to know that so many care about our family. How amazing is that?!
I could go on and on with my thank yous. I don't think I'll ever be able to adequately express them. Just saying thank you seems too little. I hope all of the people that have reached out to us - family, friends and people we don't even know - know how very much it means to us!!! Each gesture, email or prayer. I have often not been able to respond though I thank God for people often in my prayers. The body of Christ has been fully at work and we have been so very blessed to see it in action.
Please continue to pray for my little girl. Pray for my mama's heart that misses my baby. Pray for health for our family. We are hoping the children will be able to visit her soon.
If you have emailed me, I've not been able to check for the last 2 days (since my laptop stopped), but will check as I am able to. Hopefully tomorrow.
Thank you precious friends for standing with us! I'm going to sleep now for hopefully a full night's sleep. It has been a very long time since I've had that and hopefully I'll be able to sleep well. Will post more tomorrow as I can.
With love,
Leslie
ETA: I've spent far too long typing. Wanting to thank people and not wanting to leave others out. I am so thankful for each of you!
I just called and spoke with Eliana's nurse. She is doing very well. When she wakes, she is fussy and they continue to give her pain meds. She told me that the chest tube is probably pretty uncomfortable. Hopefully she will be able to have removed tomorrow.
Her O2 levels are great - 99. Heart rate and other vitals are good. I asked if anyone had been able to hold her and she said no due to her chest tube. I'm hoping and praying that if she needs held that the sweet doctor I met earlier will be there to hold her.
Really going to sleep now.
Tonight is hard. My Mom and I drove back over to the hospital to visit Eliana tonight. When we got there we found out that the other baby in the room was having a "procedure" and we couldn't go in. I was so sad to hear that. The nurse told us that it would be at least an hour. It was already about 8:30 or 8:45 at this time.
I asked how she was doing and the nurse said she was doing great! She thinks that she'll be moved to the floor tomorrow! For this reason, she encouraged me to go home and sleep. I want to sleep, but I also want to be with my baby! I've never had to leave a baby before. At least when she was in the NICU I was in the same building and could go in ANY time I wanted to. The PICU is very different - maybe too that it's a different hospital. I really don't know.
The nurse told us she would let us go in to see Eliana for "1 minute" if we wanted. I of course said yes! She had Mom and I put on masks and then we went to see our little girl. She was asleep and looked well - well, as good as it gets following major surgery and with many tubes and wires still attached!
I stroked her skin & hair and talked with her. I wanted to kiss her, but the mask made it difficult to do this. Our visit was very short - much too short for me.
I miss my little girl! I want to hold her and love on her so very much. My 7yo today told me that he thought he probably missed her more than I did as it had been longer since he's seen her. Sweet boy - sweet thoughts - but I don't agree with this statement.
So many thoughts swirling through my head. Exactly 4 months ago we welcomed this little girl into the world. She was in ICU then too. My emotions were a complete wreck! I wish I had started this blog then as the struggle was overwhelming to me then and it has helped greatly to write and share my heart. I was so overcome with grief over the struggles and difficulties that we were facing then and going to face in the future. How I have grown to appreciate so much about our little girl that I love so very much. She is a precious gift!
Roger saw the attending anesthesiologist (Dr. Schulman) again this afternoon by chance. When he recognized Roger he broke into a big smile and said "She did great!". He and the other dr were a sweet gift this morning. I have a very vivid image of the two of them taking my little girl. Dr. Schulman thanked me for letting him have my little girl when I placed her in his arms. He conveyed that it was a privilege for him to be taking my little girl! He seemed to really appreciate how precious she is to us! The two doctors then turned to walk to the OR. Dr Schulman had Eliana cradled in his arms - just the way that I hold her. I watched them walk down the hall talking to each other in an easy comfortable way. All the while, I could see my precious Eliana's head and her hair bobbing with each step. I remember watching them walk towards a window as the day was just beginning and then turn the corner toward the OR. I remember wanting this image to be saved in my memory. It was a calm, sweet departure.
I ran into the surgeon and nurse practioner outside of Eliana's room this afternoon. I asked how she was doing, though they obviously had not yet been in her room as I was just leaving it. They both thought she was doing great! I also saw the other anesthesiologist in the hall and we exchanged smiles.
I found out that Eliana was on the heart-lung bypass today from 8:50 until 10:15.
We continue to be blessed by friends - one who arrived shortly after we did today and spent most of the day there with us. Her dh took off from work so that she could be with us! This is a gal that I don't know very well - yet. Her children have had multiple surgeries and she really understands the stress of it all and was willing to be there for us through it all. She frequently stopped to pray over specific things and to offer praises too. She was watching Eliana as I was talking with her this afternoon and said "Did you see that? She tried to smile at you!". I didn't see it and am so glad she did.
I'm so thankful for the friends that were able to be with us physically today bringing food, comfort, hugs, tears, praises and laughter too! It made the day much easier having support right there. I'm thankful for my parents for being with my other children and having a fun day with them. I'm thankful for the many, many, many who have prayed for us so faithfully. It continues to warm my heart to know that so many care about our family. How amazing is that?!
I could go on and on with my thank yous. I don't think I'll ever be able to adequately express them. Just saying thank you seems too little. I hope all of the people that have reached out to us - family, friends and people we don't even know - know how very much it means to us!!! Each gesture, email or prayer. I have often not been able to respond though I thank God for people often in my prayers. The body of Christ has been fully at work and we have been so very blessed to see it in action.
Please continue to pray for my little girl. Pray for my mama's heart that misses my baby. Pray for health for our family. We are hoping the children will be able to visit her soon.
If you have emailed me, I've not been able to check for the last 2 days (since my laptop stopped), but will check as I am able to. Hopefully tomorrow.
Thank you precious friends for standing with us! I'm going to sleep now for hopefully a full night's sleep. It has been a very long time since I've had that and hopefully I'll be able to sleep well. Will post more tomorrow as I can.
With love,
Leslie
ETA: I've spent far too long typing. Wanting to thank people and not wanting to leave others out. I am so thankful for each of you!
I just called and spoke with Eliana's nurse. She is doing very well. When she wakes, she is fussy and they continue to give her pain meds. She told me that the chest tube is probably pretty uncomfortable. Hopefully she will be able to have removed tomorrow.
Her O2 levels are great - 99. Heart rate and other vitals are good. I asked if anyone had been able to hold her and she said no due to her chest tube. I'm hoping and praying that if she needs held that the sweet doctor I met earlier will be there to hold her.
Really going to sleep now.
Late afternoon update
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
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
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
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