So Happy...

Annabel is the happiest little girl. She cannot do much, she simply lays still on her bean bag and watches her cartoons. She gives us huge smiles and gives us twinkles with her eyes. We love holding her but she is still uncomfortable in her abdomen. I was struggling with the tube feedings since coming home, but this morning it went very smooth. Several people at the hospital ask me if I had watched a DVD and had been trained on tube feedings and I told them no. They said "don't worry someone will train you." When they mentioned that we were being discharged I asked the nurse about the training and they told me it wasn't necessary. Well when we arrived home I felt very uncomfortable about how hard to push to get the tube in. I found out that I was not given all the equipment. One very important piece was the decompression tubing that we do prior to the feeding tube. Two very important people locally came to the rescue. I have always appreciated my friends, but Annabel has brought into my life the most wonderful people.
There is not a day that goes by that I am not reminded of how truly awesome our God is. I am constantly reminded of His goodness in the face of Annabel. When life seems tough or I feel the need to whine, all that is needed is to look into her eyes and her innocent being.

We're Home...

Just wanted to let all know that we are home. Annabel slept all the way home. She was very happy as we walked into our home and she recognized where she was. She is still very sore and is uncomfortable being held. Thank you to all who sustained us through your prayers.

All Systems Go...

What a difference a day makes! Annabel was fed beginning with Pedialyte then about
1:00 a.m. moving to Pediasure with continuous feeds. We will not do continuous feeds when home. She will have a bolus feed 2 times daily with Pediasure to supplement.
She woke up this a.m. with a huge smile and obviously is feeling so much better. The plumbing seems to be working also. In spite of machines going off every hour she slept very well. She is an amazing baby and we are thankful to our awesome God for the success and the hope that this will help her to grow and thrive.
So many of you have prayed for the past three years and each time we request prayers you have always been there. She is a true testimony to Gods faithfulness and all of His creation.

Surgery a Success

Yay, finally something in the belly!!! She began drinking pedialyte by tube and it works! They started with clear liquids to make sure everything is working properly. At ten they will feed her pediasure by tube. It is about time the little girl get some substance in her. Hopefully it will bring some life back into her. She is still tender around the site and her fever has been down since late afternoon. Thanks everyone for your prayers and support!! We hope to be discharged tomorrow afternoon, but I will update in the morning if anything changes.

Wasted Days and Wasted Nights

Well even though the title of this post is a song, we are not singing here! They were suppose to begin feeding her this morning and as of now, NOTHING. She is so weak! I gave her some water(secretly)and she gave me a couple smiles. She just needs some nutrition in her. She is still running a temperature and needing some pain meds. Her abdomen is very tender. We did see a nutritionist today who told us about PEG feedings but she could not order them. It is all up to the doctor. The surgeon came by this morning, but he could not order the feedings. I have become a little vocal on Annabel's behalf. Even though she cannot talk, she is communicating with her pleading eyes and grabs my finger so tight as if to say I am so HUNGRY! They are saying we have to stay 24 hours after the feedings, so we may not be out tomorrow. I guess I need to pray for patience.

Please Feed Me...

I do want to begin by thanking God for cradling Annabel in His gentle embrace yesterday and during the night. She rarely cries, but she was obviously very uncomfortable during the night. This morning she is laying very still and prefers flat on her back. I am so thankful for the wonderful doctors and nurses that cared for Annabel and continue to give her the best of care. They all comment on what a sweet patient she is to have in their care.

Well it has been since Monday night about 8 p.m. since Annabel has had any food or drink. They would have allowed her clear liquids up until noon yesterday, but she refused anything that was offered. The only liquid she likes is her formula, so I do believe she is hungry at this point. We are waiting on the GI team to come by and begin slow feeds. We have been told by the surgeon today that we will not be going home. She is running a temp, which I think is normal after surgery.

Again, I would like to thank everyone for all the calls and prayers for Annabel. God has been so faithful in His care for Annabel and continues to bless us through her life.

Sleepy Time

We are back in the room and she is off in dreamland. She has been having some pain so hopefully the meds will kick in to control it. I will update tomorrow on how the night goes and let everyone know if we will be released. Thank you for all the prayers on her behalf. Today was a success and we look forward to a full recovery in a few days. I will try to post more pictures once I get back in town.

Annabel's Surgery

Annabel will be having surgery today at 2:30pm. Please keep her in your prayers. We will not know which surgery, PEG or fundoplication, will be performed until the doctor has already begun. Pray that they find a vein for the IV which is always a struggle with her, for the anesthesiologist to be able to get the tube down her throat, and that the procedure is performed with accuracy. Thank you everyone for your support and I will keep the page updated as information arrives.

Thanks to everyone for their prayers. They got a vein with just a little trouble and her airway was successful. As we hoped, she is going to end up with just a PEG button placed along her stomach slightly off to the left side. If all goes well we will be home tomorrow afternoon. I am hoping to join Annabel very soon in recovery. Again, thank you for your prayers offered up on Annabel's behalf.

My Thank You...

If someone would have told me 3 years ago that Annabel would still be alive and that she would accomplish all the things that she has, I probably would have laughed and said thanks for being optimistic. Here I am and it is all happening around me. For all of you out there that do not know me, I am Annabel's older sister Tara. I have had the pleasure of spending the past two years babysitting Annabel during the day as my "job". My family laughs at me but I know they are jealous. She is the best friend that anyone could ask for... We watch cartoons, eat snacks, and take naps together on a daily basis. It's the perfect life! Now that she has started school, I am missing the little things with her... like when I rub her nose she makes the funniest pucker face, if I sing to her she laughs out loud, and her mid-morning bath that she smiles and kicks in. These are things that we were told she would never be capable of. Children communicate in their own way, you just have to pay attention and give them a chance to express themselves. My mom has been posting blogs from her perspective so I figure I should give it a go as well.
When Annabel came to us I was terrified.... there was not an owner's manual or to do list attached with her! All the doctors would tell us is to love her and care for her each day because she is going to die. Ok thanks for the advice doc?!? Days, weeks, and months went by and there was no dying going on. I didn't know what to do or how to act so I just watched from afar as my mom did her thing. In the beginning, I was so scared that she was going to choke and die that I had convinced myself that she was choking every time that I fed her. Finally my mom sat me down and said that if she dies it is not my fault and all I can do is love her while she is still with us.... well, I took that to heart and have been doing it everyday since.
I just want to say to all of you out there that have had the opportunity to give birth to a child with a genetic disorder... THANK YOU!! Thank you for going through with it no matter what the doctors told you, thank you for not giving up on a life even if it was for moments/days/months/ no matter what the length of time. These statistics the doctors are using are inaccurate and so the more survivors that are documented, the better chance that you are helping another pregnancy down the road. If the doctors are basing these children solely on statistics then they don't have a chance, but if we can get them to identify with them as human beings then they will might be more optimistic. Life is too precious to let days go by without hope... Annabel is living proof of this. I have never seen a child as happy as she is from the moment she wakes up until the time she goes to sleep. I am all too grateful to God for bringing her to my life. Hopefully this page with bring insight to those looking for help, hope, information, advice, or anything else you may need. There are plenty of people out there that are willing to help and I truly appreciate it. My final thank you goes to my mother who has put Annabel's needs before her own and fought to give her the best life possible over these past 3 years and as many as it takes in the future... thank you to all of the people that have become a part of "Annabel's Family". She thrives off of the love that she receives from everyone around her. God's path is not always seen yet it is already set forth... have hope and follow your heart!

Thank you,
Tara

Annabel's Easter Sleepover

What a week?! She turns 3, starts school, and, if that's not enough, has a weekend getaway. This little girl can do it all!! Thursday afternoon I said good-bye to Annabel as she rode away to spend the weekend with a dear friend. At last I have a break to get some things done around the house yet all I can think about is her coming back to me... am I going crazy?!? It hasn't even been five minutes and I want to check on her. The true test will be if she can make it through the night without wondering where I am. As expected, Annabel succeeded with flying colors. She is truly growing up each day. I remember not but a year ago come May when I couldn't even stay away one night from her without her crying the whole time. Now look at her not even caring if I am there to put her to sleep. She did struggle to take her bottles, but other than that everything was great. It is hard to believe that Annabel is finally comfortable and able to adapt to simple changes in her routine. This is definitely a blessing for all of us in the fact that I can accept help from the wonderful people that so kindly offer it. I believe that this was one of the longest trips that Annabel has taken away from Tara and I.




Easter Sunday is here and I can't wait for her to get home. I have tried to keep myself occupied, but time seems to be moving backwards today. She is finally home now and as happy as can be. She seems to have enjoyed Easter morning and the birthday party that was given to her today... lots of precious toys came home with her! I appreciate everyone's help over the past 3 years and all the love that go out to her. Please remember her in your prayers over the next couple of weeks because she will be having surgery. They are unsure if it will be this Tuesday or next Tuesday, but I will keep everyone posted about the progress. She will either be having a PEG tube inserted for feeding/hydration or a fundoplication with a Gtube (a more serious process) performed to help assure that she is receiving the nutrients that she needs to maintain her health.