67 Days of pure Grace....

Halloween has come and gone and so has Thanksgiving. We have been so blessed by God to have had these days with her. I took Rabecca to the doctor on December 3rd 2007 to have a check up and wewere hoping to get her first vaccinations. This was supposed to be a happy day for me, another milestone that Becca has made it through. I was alone with her at the doctor's office for the first time ever. Her father usually made it a point to come with me, but on this particular day he couldn't work his schedule around it and he had to work. As I took rabecca in the office I found myself sitting in the corner with her wrapped very tightly in her clothes and 2or 3 blankets that were threw over her face. I was protecting her fromany form of sickness, cold or even a small child with germy hands. We went in and I unwrapped her and took off her clothes so that they could take her temperature. It was a mere 95.0 degrees. Not even close to the "normal". As I was getting her dressed to take her to the room to be checked I noticed that her beautiful olive complication was now a pale white, like a toddler would be if they were feverish and sick. Kris Barends, her doc, came in and looked at her and I began to tell her that we had to begin giving her some pedialyte because she wasn't taking her formula very well and I didn't want her to get dehydrated and I had to up her O2 (oxygen level). "That was the right thing to do, she needed the liquid and the oxygen as long as she was comfortable with it." she told me. Then she said to me, and I will never forget the look on her face nor the tone in her voice, " Julie this is going to be a tale -tell week for Rabecca. She is either going to pull through this or we are going to be faced with the inevitable. I am going to change her milk and see if that will help her, I also want her to be put on the feeding tube. We will use the NG like she used her 2nd and 3rd days after she was born." I think that I was so shocked that I wasn't phased at that time. I just got her dressed and waited for the new milk and the things that I would need for inserting the NG tube. I had requested that Julie Clark come by and insert the tube. She was the only one that I completely trusted with my daughters life. I wanted the best care for her and I knew that julie would give it to her. She had treated Rabecca lie she belonged to her and I could tell that Becca loved her too because she was one of the very few that Becca would respond to when she spoke her name. Becca would lok around to see if she could see her when Julie came in. It was very comforting to me. Julie came by after her shift was over and she had been to see all of her patients. When she came in she not only was prepared to treat Rabecca, but she was prepared to help my other 8 year old daughter get through the procedure too. She brought in Emily a littlest pet shop set complete with swimming pool, house and lots of critters to play with while she worked on Becca. She took that money out of her own pocket to comfort my child!! What a blessing she is! Emily ran off to play and Julie inserted the NG tube into Rabecca carefully explaining it to me just in case I needed to do it again myself. I noticed that as she was putting in the tube that her eyes were watering as if she was fighting back tears and didn't want me to notice. When she was done we sat down and talked and drank a tall Starbucks coffee and watched becca. She was so stressed. Her throat hurt from the tube and I was the only comfort that she could find and even sometimes then she couldn't get comfortable. Uncle Mike and Aunt Sheila came by to visit her, but could only stay for a minute. Mike and Sheila both left in tears because they couldn't take the pain that she was obviously in. You never realize how helpless you can feel until you see a child in pain and know there is nothing that you can do about it. She finally settled down and rested as much as she could during the night. I made sure that every 3 hours she was fed and it would take me about 30 minutes to feed her properly then change her and lay back down with her. That was something that we did ever since she came home, so I was getting a 1hour and 30 minutes in between times of feeding to rest with her. It was a lot of lost sleep that I was proud and very willing to give up. The next days to come are going to be the hardest....

Trying to remember.......

Things are pretty crazy around here and I don't sleep much, but that is okay. I am just so thankful that I was able to bring Rabecca home. Hospice has been here.....a lot! They met us at our house the day we came home and were GREAT!! Nancy Dearing and Julie Clark have already became a part of this family. They are both so gracious when they come to visit and they never mind coming by for just a check on her and remind me that this is what they do and that they are here for us.
Now Rabecca is 2 weeks old and she has began to have some feeding issues and some breathing issues. She forgets to breathe while she eats and it causes her to turn blue around her mouth. It literally scares the crap out of me. I am so thankful for the hospice team. They have been so wonderful. Tammy came by here today and brought lil miss a 2 week birthday cake to celebrate her life. I didn't have any candles, so I used the nipples from her bottles as make-shift candles and it was really cute. I am rying not to focus on all the bad stuff that I know is coming my way, but in reality it is soo hard. I am terrified that I am going to wake up and find Becca in my bed not breathing. I know that they say not to put the baby in the bed with you, but I can't put her in the crib. I am too worried that I won't hear her if she needs me and I can't rest at all if I can't put my hands on her and feel her breathing. I have come to realize that her being awake alone is more important to me than me getting any sleep. I can't leave her awake alone. I will sit up with her as long as she is awake, and she is up pretty much all night. I think that she has her days and nights mixed up. She sleeps a good bit during the day and is up most of the night. We sit and watch discovery health, isn't that wierd? Of all things that we could watch we watch people having surgery and recovering. Anyway, Beccca has become so dependant on me being there all the time, that I can't even go to the store without her pitching one heck of a fit. Joey will call me when I am at the store and have me talk to her until I get home so she won't cry so much. Definately a mama's girl :o) !

I have a lot to say........ I am just having a really hard day today, and I can't get my words out of my head and on to my blog. If you didn't know I am going to explain why I am all over the place. I started this blog in June of 2008, Rabecca was born October 1, 2007. This has become a part of healing for me. Tammy Tate and my Doctor encouraged me to write and tell the story of Rabecca's short, but profound life. I have to say that it does help the healing process, but it is sooo hard to revisit that time, because I have to think and pull out good memories. The things that I want to stick with me are the things that I find it hardest to remember. The things that stick most in my mind are the last two days with her and the day she passed away and I find myself wanting to fast-forward to thoes days. I NEED to remember the other days. I NEED to find the "good stuff" if you will, because I can't let myself forget..........that is my worst fear........that I am forgetting and can't live with that.

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!