Monday, August 9, 2010

My Chunky Monkey...

I continue to be blessed with good nursing help. This is the longest Annabel has stayed infection free from UTI's or anything associated with her line. This is the good part of the ride and I am trying to focus on this.
As I said I am trying to focus on this, focus the operative word here. The TPN/Lipids makes me so uncomfortable. Her liver is one thing she had on her side at this point. At this point her liver doesn't seem to like the TPN/Lipid mixtures. They keep making adjustments and Annabel keeps gaining the weight. Early in 2010 Annabel still wore a t 24mths. and 2T. I am now buying her 4/4T and having to look at 5's for the winter. I think if we can stabilize her weight she would be a solid 4T. Somedays her weight is heavy for her and you can see it in how she breathes. She still continues to be anemic but I can see a pattern that hopefully this will get better soon. At this point she seems very strong and wants to try to stand much of the time. She received her hot pink gait trainer on Friday and today we had lots of forward movement. She seems to enjoy the freedom she has in being upright and mobile.
We saw urology on Wednesday of this past week. I am so lucky to be with Dr. J. After two other urologist I feel we deserve a good one. Her last dilation was in mid-May. So we got a good 5 weeks before we noticed a decrease (better than the first one which began to close after 3 weeks) and now we are having to cath her 3 times daily. When school starts we will have to increase to 4 times daily. Her residuals were getting up in the 200's after she wet her diaper. It is so hard to tell the distention from the small amount of formula being place in her tummy or if her bladder is so full.
Annabel is on 50% TPN and 50% Peptimun Jr. We are pushing the formula in the hopes that she will one day get off the TPN. Her tummy did ok until we hit 18 mls./hr and now at 22mls./hr she doesn't seem to be able to stay on her feedings. We will meet with GI dr. on Wednesday of next week and hope to have a game plan about why she just can tolerate more in her belly. She is averaging less than one BM a week with Miralax. They have explain that she has pseudo-obstruction and this seems to be what is happening. Her gut thinks there is an obstruction and therefore everything backs up, with very little getting out until the dam breaks loose. Today was one of those days and with the pain/movement/noise in her gut it make sense.
So with our vacation behind us, wedding postponed, soldier home safely, and twins getting ready to move into the dorms I am thankful for the help of my nurses. By next week they will be here most everyday from 7a.m.-7p.m. and then at least 3 nights, sometimes 4 nights we have a sweet nurse who watches over Annabel and her monitors and I sleep soundly. It is good to know when I hit the pillow that I don't have to wake until 7 the next morning. So what I can't figure out is with all this help, why I still feel a little down. Sometimes, I really feel that my time with Carly and Colette (twins) is over and I should have spent so much more time with them and not have been so critical/tired or short tempered. Also, it is my thinking that I heap all this guilt upon myself because I feel for the first time that I really, really can't do this alone any longer. I don't know if it is the added weight/size or the TPN or the decisions I feel I need to make about how to proceed with the TPN. I know what I will hear from the GI is that she needs this now and that it will be ok for a little while but urology has a different view. Urology does believe that the TPN has given her great hydration and wonderful nutrition but believes we have to look at what is happening to the liver. He says that if we come off and she get more UTI's again then that is a better option to deal with infection than liver damage. I absolutely agree with him even though UTI's aren't fun it is better than the other outcome. Yes, I have heard how some people can live on TPN for many years but Annabel doesn't seem to be one of those people.
Sorry the post is so long! While I am so thankful and grateful for the help of our nurses, the doctors helping guide us, my son being home, all my kids are close for now and I will enjoy for about another 10 days.
My prayers is that the twins will enjoy this season of their lives, they will make wise/safe/smart decisions and feel successful in this college experience. That Derek and Linzy will grown their relationship and future together. Tara will continue to love her job, enjoy her new home. Tyler will go back to college and begin his career, hopefully close to home. Also, that whatever decisions are made medically for Annabel I will feel at peace with them.
I am sorry I haven't been writing back as much but I do read the comments/email and text messages. I have discontinued my facebook for now until I can manage my time better. Thank you to all for your prayers!


ANewKindOfPerfect said...

It's always so hard to decide which side of the scale is better, isn't it! It sounds like TPN is doing good for her UTI's, but not so good for her liver. And it's great to have her gain some weight, but not great to have her gain too much too fast. It's such a sensitive balance!

I have to say, she looks delicious in that picture. I just want to smooch her! :)

Janet said...

So glad to see your update!
And especially glad for you that you have such good nursing help, and for you being able to get some sleep at night!
I hope y'all are able to get something figured out as far as her TPN/lipid issues. I don't know much about all of that but it sounds like it is a catch 22 situation. You want/need for her to get the nutrition, but not for her liver to damaged. Even though I don't "get" this issue, I do "get" being caught between a rock and a hard place.
Praying you find a good balance.

SO GREAT to hear of her standing and WANTING to stand!!! We gotta see that hot pink gait trainer:)
I bet it really does your heart good to see her upright and moving!! YEAH ANNABEL!!!!

I know us mothers never cut ourselves any slack, but Ms. Cathy, I think you are doing/have done a wonderful job with ALL of your children.
I know that regrets are always there, and time sure does slip by so fast, I am battling some of the same emotions/second guessing it sounds like you are...not enough patience, not enough time spent together, all of it. And my oldest is only going into 6th grade! Oh, I know that I will be a basket case by the time she is going off to college:)

Sending lots and lots of love, and we are always praying for and thinking of y'all,

Laurie in Ca. said...

Praying hard that a balance can be found for our sweet Annabel. Gosh I love this girl and her cheerful outlook on life:) She inspires me to do better. Cathy, I am praying for the empty nest that you are feeling deep inside. It is real and it is a huge change for us moms:( The adjustment will come and it will be sweet. I am so thankful you are getting such great help so you can get the rest you need. Please try not to heap guilt on yourself even though we all do it. God is on your side. I love you and Annabel very much.

Love and Hugs, Laurie

Mrs Redboots (Annabel Smyth) said...

Praying you'll reach the right decisions for her care. She looks really great in the picture, and it's lovely to hear that she's trying to stand and walk.

Kelly said...

annabel looks so huge!!! how tall is she cathy? she's so darn adorable!

i'm sorry she's having issues with the tpn. i know you've said it before...but sometimes this trisomy thing just bites.

Amanda said...

So glad I got to hold her for a moment the other day. :) What a blessing... See you soon Cathy!