Wed April 18 - 2 days post op

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.