The days always seem so full at the hospital. So much information, people in and out, so little sleep and the time seems to fly by during the day. The nights can be slower. I was thankful last night for a wonderful nurse named Lisa. She visited with me several times and we talked. Sometimes it is just nice to have someone to talk to.
I also spent some time recording prayer requests in the new journal that Rebecca made me. I went back and wrote in the requests that I had made prior to Eliana's surgery and then wrote in the answers for those that I could. What a sweet thing to see sooo many of the specific prayers answered in the way that we had wanted. I also added in the newest requests and will plan to record answers there as well. I think having both together - the requests and the answers - will be a sweet testimony of God's goodness to us through all of this.
Today started early - about 6:20am - with the rounding doctors. I don't remember a lot of the conversation now, though I thought I was pretty alert then (amazing given that they woke me up and I am NOT a morning person). They did tell me of Eliana's new feeding schedule. She was to receive 10cc of Pedialyte at 6:45am through the g-tube to see how she tolerated it. This went fine. At 9:30 she was to get 20cc of Pedialyte. Because she was fussy, it all came back out of her tummy and tube. At 12:30 she moved up to an ounce (30cc) of pedialyte. All went fine.
At 3pm a couple of the feeding therapists came by. They brought a haberman bottle for us to try. One of them had suggested this yesterday when I saw her. (We haven't tried this before as it wasn't thought to be useful. She had seen it help another child with Down syndrome recently and thought it might be helpful for Eliana). I'm up for trying it! She commented that we got a referral for feeding therapy before we had even left the PACU so they must really want us to have it! I was glad to hear this as it is important to me as well.
When Eliana saw the bottle she seemed excited and moved her hands up to it. This used to be her signal to me that she was ready to eat. She did it once last week and it was then that I realized that she hadn't been doing it anymore. It really seems to help her to be focused. It took her a bit to get going, but she did get to work (off and on) and take an ounce of formula. This was all that was allowed at this time. They both thought she might have taken more if allowed. This was her first food since Monday night at 11:30pm.
The feeding schedule for the rest of the day is to try 2 ounces at 6pm and 3 ounces at 9pm. We are skipping the midnight and 3am feeding. She'll get 4 ounces at 6am and then 5 ounces at 9am. The goal is to get her to full feeds before leaving the hospital. We are going to change her schedule from 7 feeds to 6 and up the amount from 4 ounces to 5 ounces. The nutritionist didn't feel she was getting enough liquid with her current volumes.
After the 3pm feeding I called and spoke with Eliana's feeding therapist. While we were talking the nurse came in and told me that the surgeon wanted her to take the rest of her feeds by g-tube and none orally. I said OK, but then as I was telling the therapist, I felt like I didn't want to do this. I know that the goal is to test the g-tube and get us out of here. I think it may be more important though to get her eating as much as possible orally AND get assistance with feeding while we are here. That is one of the upsides to being the the hospital is daily feeding therapy as opposed to once per week. Eliana's therapist did agree that it was important to give her food orally.
I told the nurse that I wanted to do this and she was comfortable with it. I had a great day nurse today too named Amber. As I had gotten her bottle ready for the 6pm feeding, it was really later and closer to 6:30. I was pleasantly surprised to see one of the feeding therapists come again to help with her feeding. She took an ounce by bottle and we gave the second ounce in her g-tube. At 9:30, the feeding was similar with a little more than an ounce via bottle and two ounces in the g-tube. So far she seems to be tolerating it all well. It will be interesting to see how she does with 5 ounces. That seems like a big increase to me.
Other news - her incision site seems to be sore. It hurts to push on her "button" which is necessary when using it. This has decreased as the day has gone on. She also has twice tried to roll onto her tummy and cried both times. This is not her usual so I'm guessing she is still hurting.
Visitors - Some of my family visited today and it was great having them here. Roger and Rebecca came up in the morning. In the afternoon, Roger came up with Rebecca, Joshua and Isaiah. The boys like getting under the crib as it looks like a cage, watching the tram that runs around the hospital and going to get snacks in the cafeteria. (Rebecca liked the last two as well.) Isaiah brought a bright and colorful picture that he had painted. The children all liked talking with Eliana and trying to get her to smile. We are seeing more smiles today, but still not as much as is normal for her.
In the evening, Roger and my Mom came to visit. It was great having my family here - though I'm missing the ones that didn't come too. Probably tomorrow though I'll see them as it looks like we will be going home.
ETA: Someone asked who the man was - it's my dh, Roger, with Eliana.
Eliana's surgeon came by briefly and talked with us. He just wants us to get her up to full feeds before going home. I'm looking forward to going home, though part of me wonders if staying here a little longer might help with feeding. I really don't know. I wish there were some way to have a handle on that.
One of the PAs came by today. I had talked with her yesterday about the little girl (heart baby) and wondered how she was doing. She checked on her while doing rounds and let me know that she had come through surgery well! Praise God! I'm also really thankful that this gal would do this for me! I have looked for her parents a couple of times but haven't found them. I'm trusting that if God wants us to meet again that He will work out the details. As it is, I can still pray for them.
I also stopped by today to see the lactation consultants that helped me so very much in the first couple of months. (Many hours meeting and in phone calls - really a lot of time! One of them went so far above the call of duty with me for which I am so grateful.) I was able to see both of the gals that helped me. They both mentioned to me that they had been talking about me that very day. They thought it was quite ironic to see me show up.
It was funny, but just being there brought tears to my eyes. I didn't realize what an emotional issue this still is for me. I just didn't expect it. I told them both that today I was reflecting on how much I hated giving Eliana a bottle at first. I really didn't want to do it at all. Now though I long to see my little girl drinking from a bottle. Ironic, isn't it? How circumstances can change and make you long for the thing that you once didn't like at all. It was less to me about the bottle and more about wanting to nurse. I think though that the bottle seemed to represent failure to me. I know that I tried my hardest - but I still failed. It was a very hard thing to give up. It was the start of many changes to the way that I mother and I fought it as best I could. It wasn't something I had thought about in awhile, but just being back in that space seemed to bring back the emotions. I'm having to learn things all over again. I think I've learned more about making choices, and dealing with things when the choices are made for you. I've learned more about being empathetic towards others. I've learned much about the human body, medical interventions and the medical system. I've learned more about the power of prayer, love and encouragment. I've learned more about trusting God and resting in Him. I still have much more to learn - and am confident that I will have many opportunities to do this.
Just a couple more thoughts before I close. I was reflecting in my quiet time on how our purpose is to bring glory to God. I thought of Eliana's short little life and the impact of it. Of the number of believers that have gone to their knees because of her. I'm teary now just thinking about it. God is using this precious little girl to make a difference - and not just in my life or the life of my family and friends. She is bringing Him glory. Tonight my Mom shared with me a couple of quotes from her Bible study talking about our purpose in life and how God created each of us for a specific purpose. How He perfectly knit us together in our mother's womb. I commented that those types of passages take on new meaning when you look at them in the context of someone that the world views as less than perfect. Some even view this little life as something that could have been prevented and possibly shouldn't have even happened. God knew what He was doing. He lovingly made Eliana just like as she is - to be used for His glory. She is not a mistake, but a child created in His very image. What a God we serve that can take each of us - imperfect in so many ways - and use us for His good.
He loves you deeply!
PS Pictures coming. Just going to upload them.