Help, I am drowning and I can't get up....

No, not really but maybe I have just felt like this for the last two days. We weren't even gone that long but much to do upon return.

WARNING: This will be all over the place, I will not proof it and if you have any questions just let me know if it doesn't make sense.

Biggest news is Annabel seems to be recovering quickly from her surgery. Yes, she is still so tender to be moved anywhere. So we have two main places beside her bed where she sleeps at night. She is comfortable in her beanbag and she received her new wheelchair on Monday morning while in Houston at the hospital. Yes, if everyone remember she received one last year that was fairly flashy, lots of pink. At the time, when we were planning for her wheelchair they (therapist) thought she needed the ability to self-propel. Actually, I wanted both, one that was able to tilt-in-space and one that she would eventually be able to do if she was able. But the wheelchairs will not do both. Well, Annabel's status has changed and maybe due to the tethered cord but she was curving right out of her wheelchair and just couldn't sit up straight. She sits beautifully in this one and she is at such a good level in her new one. It also can transport her oxygen neatly secured to the wheelchair and it has a pole that her pump and feeding bag attaches to. I need to try to take a picture with her sitting in it. She has been so comfortable since the first time we placed her in it Monday.
Back to Annabel, she is having lots of GI issues that began on Saturday while in the hospital. They thought she had a perforated bowel (reason for NPO Sunday night and all the surgeons who decided to visit Sunday night late through Monday early morning) but thank you Jesus, not a perforated bowel. She is having spells of becoming very distended and not being able to release any air(gas) on her own. So with a fairly good size tubing (20fr. catheter) we are having to vent her several times daily. The GI consult that came by thinks Annabel cannot break down all the sugars, probably more to this explanation, but I was totally stressed when he said no more foods orally, only by G-tube. It broke my heart that one of our last normal functions, i.e. eating was for now not going to happen any longer. You see with Annabel in the past when we cease to do something she gives it up all together. It is just too easy for her. But of course, I want her to do what is best for her entire body, no just me, wanting this normal part of what she can do! Yes, I do know this is not about me, totally about this Angel and what it takes to get her to thrive.
Upon release, they didn't want her taking Pediasure, breast milk or eating her baby foods any longer. So I was fairly stressed out about getting my hands on what was prescribe called Compleat Pediatric. I spent an entire day going to different home health, Wal-mart and Walgreen's(since Internet said they carried, they don't) and calling anyone who might know how I could get some. My hometown pharmacy (KINGS Pharmacy) who compounds, delivers and answers my gazillion questions solved my problem. I requested late yesterday evening and they had it this morning. So we began Annabel's new feeding. From what I understand, doing absolutely no research, because at this point I am trusty my doctors, it all made sense! This formula is veggies, meat, fruit (i think) all blended up into a formula. If any of you have tried or know someone who has tried this formula, please drop me a line and share your experience. I do have a blenderized diet cookbook for tube feeds but honestly, I don't cook much for my family as it is! Wish I did, but the fact is I just don't.

Besides, going to the neurosurgeon for follow-up (at this point too early to tell if it was successful or to what degree and what it could have affected)in two weeks, she will be seeing a GI doctor to find this source of air that is making her very uncomfortable and also seeing the general surgeon about what possibly will happen concerning this. If the tethered cord surgery wasn't successful concerning her urinary issues, Bella will be facing a possible Mitranoff (sp) where we would cath her from the opening in her belly (not the vesicostomy) that was once mentioned. But one thing at a time.
My family is doing good. I talked to my soldier boy yesterday and he sounds like he is doing well. Working 12hrs. days 7 days a week but I was so thankful for the call. Derek and Linzy(sweet girlfriend) are doing great and will be posting more pictures very soon. I have new camera and so much trouble loading and locating them to put on blog. Tara spent the time at the hospital with me and I enjoyed us having time together again. So much help for me and just fun hanging out. Carly and Colette had a sporting event at school for the weekend but were able to come up with their dad to pick Tara up and visit Annabel. I am blessed that my family allow me all the time needed to take care of Annabel with continuous offers to run errand, come and bring me whatever I demand (I so can be that way)! Kourtni returned on Monday from her long winter's nap (oh,not really just extended vacation with her family back home in Utah). It is so good with all my errand running to catch up having her right here in the house to help me. Annabel didn't skip a beat in remembering who Kourtni is!

I do feel this blog is one-sided in the fact that I don't inquire much about all of your families like I should. Sometimes, I truly think maybe the blog is one thing I can't do any longer. But then someone shares personally with me how Annabel has touched their lives and I think, just keep on doing when I can. Then there are all Annabel's prayer warriors that I feel like I've know as long as she has been in my life. With just your words you life me and give me the strength to keep on, so this I will! I never want to close without a "thank you." How I would love to say that I contact each and everyone of you but I would be lying, but I want to. So I will keep trying. Please, I love to hear anything you share. This journey is crazy and something that may work for you or your child maybe something that will help Annabel to make her 5th (of my gosh), 6th etc. birthday. Talk about taking a village to raise a child, yes mam that is what ya'll are, "our village." I welcome and am so grateful for the help. Let me close by saying, I love this girl beyond word, but for this Trisomy 18 illness, I detest it.

Prayers, please...

Please keep praying!! Her little body is hurting all over. When the doctor came in this morning he agree there is too much pain since last night. He actually rolled her a bit to look at her back and she screamed and cried for a while. If anyone knows Annabel, it is so hard for her to cry out loud. Ok, yes it did break my heart! Last night after the doctor came by it was agreed it looked like she needed help to go to the bathroom and ordered medication for her tummy and said no more morphine since this slow her GI system. Well within about 2 hours she was much relieved for a couple more hours. She rested in a light sleep til early this morning. She is probably in more pain now from what we can tell than before. He ordered the morphine right away. She is still in pain at this time but we can't touch her. They said at the earliest tonight if we can hold her. They did labs and an abdominal x-ray. Neuro came back and said radiologist saw something on the x-ray so she needs to go down for a chest and more abdominal x-rays. He also said she could have more inflammation that necessary around her spine and maybe this could be the cause of the pain. I am still not giving up on holding her today. She needs it and so does her mommy. Yes, I do realize this isn't just about me! Also hoping that she will feel like a picture tonight! Thank you for your thoughts and prayers....

Amazing...

Again, she is amazing! She comes through with flying colors...This will be short.We are in PCU and she is resting peacefully. I think she looks at us and wonders why we can't pick her up. She has longing in those beautiful eyes. According to the neurosurgeon, everything went well. She tolerated the surgery as well as he expected. Now only time will tell what issues it may have resolved. I just want her to be free of pain. She stayed in recovery a little longer due to nausea and just a few low sats but overall she is doing well. They want her to stay in PCU to be monitored. My guess is if she has a good night maybe by tomorrow go to a regular floor. She has to be flat on her back for two days. They doctor says he will visit with us on Monday and then I think if all goes well we may get to go home. YEAH!

Thank everyone for the many calls, emails, text and comments. One thing that is sure is that with Trisomy 18 it is hard to be put to sleep and she continues to come through. It is only through God's graces and prayer that she does so well. Will update maybe later tonight.