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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
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!
***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:
- 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
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