I've been trying to post this for hours, but having problems with my computer. I hope it will work this time. I thankfully saved my entry as it got lost during trying to get connected. Will post and add a small update at the end.
I'm feeling better now, but not long ago I had tears in my eyes. It's been a hard morning. I remember telling someone (feeding therapist?) at the hospital that the last time things went well for the first couple of days, then when we got home things began to go downhill. It's nothing earthshattering - and nothing seems as hard as some of those days before heart surgery. Sometimes though, things can just seem heavy.
It didn't help that my day started at 5:50am. I know for some of you that is no big deal. For this sleep deprived night owl, it was hard. I got to went to sleep later than I had intended as Eliana had a hard time falling to sleep. I gave her the 6am feeding and at the end of it, she threw up. Not a lot, but enough to get on her and bedding and obviously to wake her up. This is the first feeding that she has not tolerated. I'm not sure what happened or why it happened. I'm hoping/praying that it is a random thing and that it won't happen again.
After cleaning up Eliana and washing her bedding, we layed down and took a nice nap together. Her next feeding got started a little late. She wasn't interested - at all. She pulled back, grabbed at the bottle and pulled it away and just wouldn't eat. This is when gentle tears started falling down my face. I began to ponder all of the things for which learning to eat is important. It helps strengthen the muscles around her mouth so that she'll be able to keep her tongue in her mouth (a challenge for many children with Down syndrome) as well as affecting small motor skills (we use our mouth and tongue positioning often when doing these) to the most important - speech. Well, I say most important, but I would have to say that the primary thing though is still learning to eat! It's hard to imagine the struggles of trying to help a child learn to eat. Not just being picky - but not being able to eat even remotely enough to sustain life. I sometimes think that had Eliana been born in a different time or a different place that she would not have made it. I'm sure that there were others like this. I'm thankful that Eliana is here now.
We spent on and off about 40 minutes this morning trying to get her to take a bottle. I thought for about the first 15 minutes that we were going to have to write 0 down for the amount taken orally. It would be the first time she has refused the bottle since her surgery. I just didn't want to do that, so we kept on trying. She did finally take about 1.5 ounces. Thank you God. I just prayed and prayed for her as we worked on feeding.
Lastly, the surgical site where her button is located is starting to get red and a little "crusty". It is normal I think, but I'm hoping that it won't get infected or develop problems. Since Eliana has had such sensitive skin on her face, I'm hoping I can take good care of the site and that it heals well. She also has a second surgical site where they had to make the incision. It will take about 2 weeks to heal and is currently covered with steri-strips. I basically have to keep it dry so that it doesn't open up. They did not use stitches but instead used some type of "super glue" to hold her skin together. This is also how they closed her up after her heart surgery. Of course that site wasn't beside something that spewed liquid. So far, it hasn't been too bad.
Sorry for the less than hopeful post this morning. It just feels like a lot at the moment. I'm hoping to get another nap. I used the 6am feeding time to pray, but I'm not sure it's the best time for me as I'm just not the most alert in the morning. Maybe with time I'll learn, but I can still use more time with God to refresh my weary soul and to hand over the load that I'm carrying.
Would you please pray that Eliana would learn to eat? I want this for her so badly and yet it is really out of my control. I try not to feel guilt or doubts about things I "could have" done. (Like using this haberman feeder earlier when a couple of friends suggested it. I did ask the therapists who said we didn't need it and just listened. It's hard to know sometimes when to do things on your own.) It really isn't useful to ponder the "what ifs" but instead to deal with "what is". I often say "it is what it is" in regards to things that I wish were different, but that I really can't change. This is one of those. I just keep praying that we'll be able to do what is best for Eliana - all of us that are caring for her - and that is really I can ask.
Thank you for your prayers.
ETA: Talked with a gal from the pediatrician's office this morning. She had called while I was in the hospital. I didn't know who it was and had tried calling back once and didn't find the right person. Anyway, Dr. L had left a large note for her to check on Eliana. I joked with her that Eliana was one of her favorites. She replied that Eliana was the only one that had a large note left for her. She also shared how much she thought of Dr L. No surprise here as we think she is great! I do think Eliana is special to her - but I also think that it's because Eliana has needed someone that feels this way about her. My other children haven't and I never felt slighted either. Eliana has a wonderful advocate in her pediatrician.