I'm getting behind in my writing ... but I think that is just going to be the way things are for awhile. I'm used to being on time or at least being timely. That has been true with so many things from thank you notes to emails to other things both large and small. For now, I'm learning to walk a little more slowly, to do what I can and let the rest go, to hand things over to people who are willing to help, to trust that people understand my heart - that even when I dont respond it isn't because I don't care, there just aren't enough hours in the day. (And I'm awake for many of them!)
Yesterday was a full day. We met first with the surgeon's nurse. She had been helpful on the phone and was in person as well. She both answered questions and asked them. I found that much of what I'd been told in the hospital wasn't accurate. I wish I had known it sooner, but am thankful to have found out at all. She told me that she was out of town dealing with a family emergency and that was why she hadn't been around to help then. I'm just glad I asked. I wondered if others sometimes just deal with the struggles on their own.
The connecting tube I'd been using wasn't intended for long-term use. It holds open a "flap" inside her button to allow the flow of formula. The other tubing (that lies flat) does fit!!! It also does not hold the flap open, but instead the flow of liquid pushes the flap open. Well, it may be that her flap is "stuck" open and there is nothing that can be done about it. It may have been from using this connecting tube. It may correct on it's own. We'll just have to wait and see.
When we opened her button, a lot of liquid came out! I was glad she was wrapped in a sheet - their sheet - so it didn't go all over both of us. When the nurse saw this, she commented that Eliana was going to be a candidate for the mic-key. This is a different type of button. The downside is that it lasts 3-6 months (she said closer to 3) and the one Eliana currently has lasts a year. The other downside is that when it needs to be replaced, I will do it. I guess if I've done the NG tube I can do this too. Though I don't want to. The upside is that when you connect the tube it "locks" into place so can't be mistakenly pulled out.
If she does need this new type of g-tube, she will not have to have another surgery. It can be done in the offices as an out-patient procedure. She did say that it would hurt Eliana. It can't be done for at least 6 weeks though so no sense in worrying about it now.
The nurse started taking off the bandages from Eliana's incision. I commented that I was told to leave those in place for 10-14 days. She said it was healed and could come off. She also said I could bathe her. (I had been told not to while she had the steri-strip bandages on.)
Other things - she told me that the rate of flow was too fast. (I had already taken it down and took it down even further. She asked who my nurse had been and I told her that she had been great - so nice! She is new though and clearly needs some training/teaching on this type of button. I told her that the residents/fellows probably did too. Again though these doctors were so very nice and helpful to us.
I felt encouraged by some things and not by others. There is nothing that can be done though about mistakes but to move forward. We went next to her feeding therapy. She hadn't eaten in a while and I was hopeful that this would bode well. She fell asleep going there and we let her sleep for awhile so we could talk. We discussed her amounts (I felt that they were too much and too frequent based on how her stomach is emptying - or not). The therapist agreed. She recommended that I cut down her feedings for the next 5 days until we see our ped.
She asked if I knew how to recognize signs of dehydration. Oh yes! I have experienced that first hand many times over my pregnancies. I told her I saw no signs of dehydration with Eliana. She also recommended that I talk with a nutritionist. She thought that sometimes recommendations are made for special needs children that don't take into account their special needs. I called today and our case manager is going to set that up for us.
So for now, I am going to work on 5-6 feedings per day. The therapist urged me to let go of a feeding if we got behind and it meant she needed a feeding very late in the night. This will help me to get more sleep which would be so very nice!
I've noticed some changes over the last week since Eliana's surgery.
*Rubbing her face - She was doing this a lot! Rubbing it on my shoulder when I held her, in her crib when she was laying on her stomach and even on her hands. She doesn't do it at all anymore. I think it was truly the tape/tube bothering her sweet little face and it was the only thing she could do to try to get it off. I'm so glad that she doesn't have to deal with that any longer!
*Staring at her hands - This has been something she has LOVED doing for quite a while. She has been quite mesmerized with her hands and it has been fun to watch this. She isn't doing that now - and I miss it. Not sure if it is gone - or just gone for now.
*Smiles - She is smiling, but not nearly as much or as often. Her therapist today said that the effects of surgery can last for a couple of weeks. I had told her that I didn't think Eliana was in pain, but she also isn't quite herself yet either.
*Sounds - She is making a few new consonant sounds. I love hearing these! I am hopeful that her hearing has improved and that speech will not be the struggle that eating has been for her.
*Rolling - Not doing this often at all. She was rolling a lot prior to surgery. The first couple of time she tried this after surgery, it hurt and she cried. She can do it now, but doesn't nearly so often. She also was a tummy sleeper, rolling onto her tummy even if I laid her on her back. Now at night she rolls onto her side with one leg over - as close to being as your tummy without having it touch the bed - as you can get.
We had physical therapy today too. The therapist commented that she was developing quite well and was pleased with her progress. She played some games with her involving memory and she did quite well. This is always encouraging. I love hearing positive comments on what she is learning or doing.
I need to go. This entry feels very "factual" and I hope it isn't dry and boring. I'll try to add more photos soon, but for nowEliana is wanting attention before her last feeding of the day. Eating from the bottle is going ... OK, not great. A good day so far has been 5 ounces. Still pretty far from our goal. We are going to keep working on it, but I think it will be a long road though and not a short fix. A road that I never thought I'd be walking and yet here I am walking it with a little girl that has captured my heart. I am very thankful for the many others that have been along the path to encourage us especially when it was dark and difficult. We greatly appreciate your continued prayers!
With love,
Leslie
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