Wow! Another busy, busy day! Thank you to those of you that have been praying for our precious daughter! I am going to try to recap our day and remember the highlights of all that has happened. My heart is continually boosted by the outpouring of care and love for my little girl. She seems to draw people’s hearts to her which I love to see.
The blood draw did not happen in the middle of the night, though I was awakened about 4:30 by Eliana crying. I was VERY surprised as I don’t remember her waking up at this time ever. Maybe as a newborn? Definitely not in the last 3 months.
I picked her up and tried to console her. She was just crying. The nurse came in shortly after that with meds. I was surprised, but she said she had been taking her vitals and obviously awakened her. Once awake, it was clear she was in pain. Poor little honey!
I went to sleep after getting her settled. Woke again about 6am when the nurse had come in to feed Eliana. She had asked last night if I wanted her to do one of the feeds and I thought this one would be great! She had her laying in the crib taking her bottle. I told her that I usually held her more upright, but she was doing it this way to give her more chin and cheek support. Fell back to sleep and was awakened shortly after 7am when a cardiac fellow was making rounds. He told me we would be seeing Dr. Jaggers (her surgeon) later that morning.
Eliana started to fuss again. (This was shortly after the ending of her tube feeding.) She had a bm which I changed and then she spit up a LOT! I tried to hold her upright to help her get cleared and also suctioned her mouth. She was really having a hard time. She then fussed and fussed. It wasn’t time for her meds yet and I wasn’t sure if she was in pain or not. I held her, rocked her and sang to her. One of the nurses came in to check her vitals and commented on the condition of her arm. I told her she was scheduled for more bloodwork and she immediately said that she was going to pray for her! I told her that many, many were praying for our little girl and it had made a world of difference.
During this time the gal doing the bloodwork came in. I asked her if she had been warned about Eliana being a hard stick. She hadn’t. I told her that she had many, many sticks (today I counted 11 in just one side of her groin!). When she said that she was just doing a heel prick, I told her that the techs had difficulty with that too. She warmed her foot and then had a great stick! Her heel bled freely even! Thank you for this answer to prayer!
Several of the doctors made rounds and spoke with me. Eliana is doing well and they hoped to remove some of her monitors today.
Roger came up this morning. I am glad he was able to be here today when there is a lot going on and a lot of information being shared.
Just about 9am someone arrived for Eliana’s chest x-ray. It was time for a feeding, but we decided to wait on it. I sat in a wheelchair holding Eliana while we were wheeled to the lab. She did fine - again - with this procedure and didn’t mind it at all!
When it was over, the lab tech told us that she should not be fed via tube until it was inserted another couple of inches! Yikes! The bottom of the tube is in the stomach, but the side ports are feeding into her esophagus. This could likely have been why she spit up and why she was so gassy. I’m so glad that we found this out here! It also helps explain the troubles one nurse had in finding the signs for correct placement. She thought it wasn’t in and that we would need to redo it. When we got back to the room, the nurse took off the tape and pushed the tube in further.
I took a short nap in the morning and was awakened when Dr Jaggers came in. He mentioned that this was a personal visit. (I love that they do this!) He removed her bandages and said she looks great. He said she could wear clothing and didn’t need any special care for her wound. We are scheduled to see him again next Friday. He also commented that Eliana was a favorite in the ICU. (It touches my mama’s heart when I hear that others love, enjoy and appreciate my little girl!) We took a photo of Dr. Jaggers with Eliana. He tells us that we should be home by the week-end! Probably tomorrow (Thur) or Friday. Truly amazing! I can’t believe how quickly she is healing from open-heart surgery!
Now it is time for another sedated echo. She is asleep at this point and we are again wheeled up to the lab. She wakes while there. She is given the choryl hydrate sedative and does much better with it this time. We talk with the 3 nurse/lab tech in there and ask a lot of questions. We are able to see the patches on her heart! Isn’t that amazing! It looks like there are 2 patches on each of the holes. I even have an u/s picture. Not nearly as cute the typical u/s picture, but still pretty neat!
One of the gals comments on how that though Dr Jaggers is a man of few words that he is one of the most compassionate men she has even known. It is clear in the specialty he has chosen that he cares greatly for children. I loved hearing this about him as we really haven’t had any time to get to know him. The echo is good! There is some regurgitation from the valve that had to be cut to repair one of the holes. This is not a concern and hopefully will just improve with time. She will continue to have echos over time to monitor this and the other repairs. The repairs on the holes look great! No portions of holes remaining or leaking there at all! Praise God!
Our sweet baby girl is finally really sleeping. She has had a long and busy morning. She waits awhile for her next feeding due to the sedation meds. She doesn’t wake for it and we don’t try to wake her. She is still sleeping peacefully in her bed.
One of her the echo techs today asked if it was good to be on this side of surgery - most definitely YES!!! It is so much better on this side. I didn’t share how on Monday after we had handed Eliana over and gone to the waiting room I began to have chest pains. The pains were sharp and on my left side. I prayed for them to pass and tried not to succumb to the fear that went with them. All of the worries, doubts and “what ifs” that can plague your mind. When the fear is about one of your children - how very compounded it becomes. I’m not sure I can ever explain how very painful and difficult it has been to have my child struggle so much and to be in heart failure for months. Or the fears that she wouldn't make in on numerous occassions.
I have been driven to my knees so many, many times - for my daughter as well as others who have walked or are walking on this path. On the days leading up to surgery and especially on the day of surgery God’s peace which passes understanding was very real to us! I have never experienced His peace like this before.
I praise God for all that He has done - in my daughter, in the people He has placed in our path and in my own heart. I am so thankful to have more time with Eliana. While this road has been so very hard - and still hopefully has many miles on it - I can now with tears of joy say that I am thankful to be walking on it.
With love,
Leslie
PS Thank you for all of your comments and prayers! I sometimes wonder if I'm sharing more info than is helpful. I know that it helps me to write it all out. Hopefully more pictures to come later tonight. I know that for me I am visual and seeing pictures helps to understand more than just words alone. The seriousness of the surgery is so very obvious when you see her post op. She is looking better each day though! I LOVE seeing her smile! It just lights up my world.
Wednesday, April 18, 2007
Tuesday, April 17, 2007
Photos from day of surgery
I decided to try a new post for photos. These are of the day of surgery. Several of Eliana, one with the 2 anesthesiologists and the rest are post-op.
*****WARNING******
Some of these photos are difficult! Please view them prior to letting any children see them. I remember well the first time I saw a photo of a child post-surgery it took my breathe away. It was so hard to see - though perhaps for me it was because it was the future for my little girl. Perhaps this will be easier knowing Eliana is doing so very very well!
The first 5 photos are pre-op. The last pre-op photos is Eliana and I with the two anesthesiologists. The one just following this picture shows her hooked up to a lot of things. It was this one that I thought might be hard to see.
This is a slideshow and I'm hoping this link works. If not, I'll try to fix it tomorrow. (Let me know if it doesn't work.)
http://s176.photobucket.com/albums/w187/rogernelsen/?action=view¤t=1176814618.pbw
Love,
Leslie
*****WARNING******
Some of these photos are difficult! Please view them prior to letting any children see them. I remember well the first time I saw a photo of a child post-surgery it took my breathe away. It was so hard to see - though perhaps for me it was because it was the future for my little girl. Perhaps this will be easier knowing Eliana is doing so very very well!
The first 5 photos are pre-op. The last pre-op photos is Eliana and I with the two anesthesiologists. The one just following this picture shows her hooked up to a lot of things. It was this one that I thought might be hard to see.
This is a slideshow and I'm hoping this link works. If not, I'll try to fix it tomorrow. (Let me know if it doesn't work.)
http://s176.photobucket.com/albums/w187/rogernelsen/?action=view¤t=1176814618.pbw
Love,
Leslie
Prayer request
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!
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!
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
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