Amazing Love.......

I had never been at such peace in my life. Through this whole experience I had been so nervous and I was so worried all the time you would think that I would be even more concerned about how long I was going to be able to enjoy her, but I feel like God put this blanket around us and was protecting her father and I from fear and giving her the strength to stay with us for a while. It was an awesome feeling. Rabecca and I had a long night and an even longer day, so I snuggled up to her and we took a long deserving nap. She woke me up and let me know that she wanted to eat again, so I fed her. This time she ate a little more than the first feeding. She managed to eat 1/2 oz of formula! Amazing Love is what God was giving us. We had to keep her very warm because her temperature would not go above 95 degrees. She was so wrapped in blankets (2 hospital blankets, her pink warm fussy blanket, and clothes and a hat) that I literally carried her like a football. We decided that we wanted to dedicate our baby to the Lord. A sort of baptism without the water, due to not wanting to give her chills. At 5:00pm literally everyone from our church showed up in our room to be there for this amazing event. Carrie Lee began by singing "Jesus loves me" and of course I began to cry as I looked down at my beautiful bundle, thanking Jesus for giving us the time that we had already had with her. Her uncle Scott , who is also our pastor read from the bible and talked to us about what it meant to dedicate our child to the Lord. It meant that I was giving her back to him, just as he gave her to us. It was very emotional for us to do that. I suppose it was just the words "giving her back" that put the lump in my throat. We both said "Yes, we are willing to give her back and that it is ok for Him to take her at his will". Then a very close friend of ours, Tim Lee, who is also a pastor spoke a few words and read from the bible as well then we prayed for her tiny little body to be healed by His hands no matter how that would be. Either take her home with to be with all the other angels in Heaven or to heal her and let her stay here on earth for a while. It was beautiful to see all those people come to celebrate her life with us. As everyone began to leave they each kissed and blessed her from their hearts. Now we were completely alone for the first time. Rabecca, Joey, and I. We each took turns looking at her and loving on her as much as possible. Dr. Clark came in several times and checked in on her and to his amazement each time he looked her over she was just fine. He couldn't believe it. " This little girl is teaching us all something. It is very rare to have a full T18 baby survive this long and do so well."
We stayed another night and everything was going well. The third day she began to have feeding issues. She was having trouble remembering to swallow and was not ingesting as much food as she had the two days before. A nutrition consultant came in and was giving me tips on how to hold hr cheeks, and because her jaw was set back a good bit it was wearing her out to try and eat, so she taught me how to position her face so that she could swallow. That worked for the next two feedings, but then again she wasn't getting enough. "We are going to put an NG tube up her nose and down into her stomach. We still want you to try with the bottle and whatever she doesn't eat you will have to put in her tube." Joey couldn't stand to watch that so he excused himself and went downstairs. I got real nervous and began shaking a bit. "You ok?" the nurse asked. "yeah just nervous" I said. "you will do fine. I am going to show you how to put in the 1st tube then you are going to try it." What? I can't do this I thought. So I put on my big girl pants and took the bull by the horns and said that I would do it. She made it look so easy. After she got her ready and we fed her I put her back in the bed with me. I began to sob. It all hit me that I was going to be responsible for ALL of this. I was her life line. "What if I do something wrong? What if I hurt her with the tube?" I was a mess. The next feeding it was my turn. I tried and I tried and I made her little nose bleed and that alone about killed me. My fear of hurting her was staring me right in the face. I had hurt her. I couldn't go home unprepared for putting in her tube. My doctor came in and said that he was discharging me. "I can't leave yet! I don't know how to feed her." I told him
" That has nothing to do with your discharge. You can leave her here in the nursery and come back tomorrow." There was NO WAY that I was leaving my sick baby there alone. I called Dr. Clark in and to make a long story short he made sure that we were able to stay another night so that we could get her feeding down pretty good. The next day was our day to go home. I was so excited! Joey& his dad went out and bought her a car seat. We hadn't done that because we didn't know if she would ever make it home. I didn't even have the nerve to put up her bed or put out her some clothes until 1 week before I went to the hospital. I just didn't want to have all these things out if she didn't make it home, because they would have been a reminder of what was never going to be..........a baby there. I walked into my house and laid lil' miss Becca on my bed and that is where she stayed.That bed that I finally bought and put up, she never slept in. I laid her in it when I changed the sheets on my bed and once to take some pictures of her in it. Finally we were a family of 9! Yup that's right nine!