Friday, January 22, 2010

All is well with Annabel...


video
(You may need to mute the music on the blog)
Here is Annabel keeping the beat with a little stuffed valentine puppy. I am not sure the quality of the video as it seems very grainy on my computer.

Today was Annabel's first day back at school. She has been feeling better day by day since her surgery. Yesterday was our visit to her neurosurgeon and he basically released her. She will not begin Physical Therapy as of yet, but she may return to school and speech therapy.

To say that I am amazed by all that has taken place in the past two week is an understatement. When Dr. J told us that she needed this surgery for a tethered cord he had two MRI's to back this up. A fairly drastic curve in her spine in a relatively short period of time. But he was honest about the results of the surgery not being a high percentage. One thing was certain that this little girl was in a lot of pain and had been for a while concerning her spine. Because Annabel has several health issue aside and stemming from Trisomy 18, he felt there was a good chance that some of these problems could be helped. From the very beginning I had much faith in Dr. J. He never questioned her diagnosis. I have come to believe that the younger doctors have a more open outlook/opinion concerning Trisomy 18. A few of the issue that could be improved would be her oxygen(due to her left lung being compressed with the curve), improvement to her neurogenic bladder/bowel, her overall discomfort. When Dr. J came to consult with us right after the surgery, he said she did extremely well with her sedation and he felt well with the surgery but that time would tell if it would be successful and how successful it would be. Due to her GI issue that occured right after surgery it was hard to tell, but we were lucky to get a GI consult and a new take on her GI issues. More on that later. With each day Annabel's soreness decrease. She has been so happy and much more comfortable. She has been scooting on her back, arching her back and really moving her legs in ways she didn't prior to the surgery. In the hospital right after surgery, they wanted to allow her to urinate, the immediately ultrasound her bladder, then I had to cath to confirm her residuals. At this point I was disappointed as to her residual were still in between 120-200cc. With each passing day we have seen more wet diapers and residuals becoming less and less. Ideally her urologist wanted them to be less than 30cc which was never for Annabel. In the last two day they have been less than 30cc and today I only felt the need to cath her one time. Also concerning her bowels, she was on two adult doses of Miralax daily and struggling to get this amount to move her. At this point we are down to 1/4 of this dose daily and this is producing 2 -3 BM's daily. She doesn't strain at all for either urinating or bowel movements. She doesn't draw herself up in pain ever, as this was happening each time someone tried to pick her up prior to surgery. She is still needing oxygen during sleep but much less spell of alarming. It has only been two weeks today, but according to Dr. J his words are that he really cannot be happier that what is happening post surgery at this point. Her sleep has also improved to almost 12 hours with continuous sleep. She will wake if she has a wet or dirty diaper at night and also if she can't reach her pacifier. But she returns to sleep. She wakes with a smile that rarely leaves her face the entire day unless she is in deep thought, watching her movie or sleepy.

With the GI consult prior to discharge we had two fresh new residents/fellows consult with her over the abnormal KUB done on Sunday before being discharged on Monday. They listening patiently to her history. They commented on the amount of air/gas that filled her tummy once again almost continuously since her surgery in June. I had told them about her drastic decrease in oral intake(baby food) and that her abdomen was almost always distended and tight, feeling and sounding like a empty drum. After reviewing the testing that was done while in the hospital he suggested that he didn't think she was able to process the sugars in her foods or the breastmilk, pediasure or any of her past feeds. He said her feedings were fermenting and basically rotting in her tummy. He wanted her off all oral feedings until a swallow study could be done and wanted her on Pediatric Compleat. This is meats, veggies, fruits etc. that has been processed into formula. She has ( 4), 40z.feedings a day, with continuous feeds from 8 p.m. til 8 a.m. at 43 ml. per hour. This gives her right at 1000 calories daily. Not one day has her tummy been distended or made all her alien noises. The only time was when I was eating and I felt so bad that maybe she was wondering why I wasn't feeding her so I gave her her pudding. I paid the price that night with her being very uncomfortable and a distended belly. Only time will tell if this is what Annabel needs but we have not seen her this happy in quite a while. Also in just two weeks ( counting surgery, being npo, and restricted feedings after surgery she has gained 1 lb. and 4 oz. I don't think she has ever gained this much weight in 6 months. At this point I am thankful to God for the success of her being put to sleep and waking from the surgery successfully, thankful for the anesthesiologist Dr. T who again agreed to watch so closely over her sedation and recovery. To Dr. J for seeing that Annabel was worthy of this surgery and being there each and every day after the surgery, for the surgeon that came in and were patient and attentive to her GI issues. To the GI consults who came in and listen and suggested this new eating plan. To all who prayed and keep up with her with words of encouragement. Thanking God that for now we have our happy, smiling, clapping and strong Annabel back. Just some pics of her day 2 weeks post surgery....

The Many Faces of Annbael





What I like most about her chair...her sweet name Annabel

18 comments:

May said...

what a lovely truly customised chair!

LIke you, I do observe too that some of the younger docs are more open and receptive of the Trisomy 18 diagnosis.

Thank you for this post surgery update-- so good to hear that it's taken away her discomfort. That's all we want for our babies!

Cathy can you share the rationale for continuous feeding at night? Why not feed everything in the day? Cos Vera's GI has also suggested that.

Mrs Redboots (Annabel Smyth) said...

It does sound as though she's doing great now, and that the surgery has resolved some of her issues. Let's hope for a good few months of steady progress ahead!

Janet said...

"Awesome Annabel"--that's my new nickname for her!
SOOOO good to hear all the positive news! I am so thankful that the surgery seems to have helped in so many different ways! How great that she is moving her legs more, and not having pain while using the bathroom. I am also amazed at how she has recovered so quickly, but don't know why I am so amazed. We "mere humans" seem to sometimes have the habit of being surprised that God keeps His promises!
Love to Annabel, and look for a "happy" from the mailman soon!

ANewKindOfPerfect said...

Oh my gosh Cathy, I am sitting here with tears rolling down my cheeks! I cannot believe how awesome she is doing. Thank heavens for doctors who treat the patient, and not the diagnosis!

She is just awesome. Thanks for letting us know her. :)

The VW's said...

Praise the Lord!!! I am so happy for you and sweet Annabel! What a wonderful blessing! Love and Hugs!!!

therextras said...

I am so happy for Annabel and you! Prayers answered!

Loved seeing photos of her smiling! (I couldn't see the video, but don't fret about it for me.)

Thank you for posting, Cathy!
Barbara

Tamara said...

How cool is that! how'd you get her name on her chair? wow!!!! Love all her photos! So glad she is doing better!!!! Yea!!!

Penny said...

Wow! What an incredible post!!! So glad that Annabel is doing so well. It is time for her to be pain-free and be able to rest!

Love, love, love, the BIG smile and the pretty dress!

Her chair is a peach too!! I hope she gets more interaction with the world by being in it!

Annie said...

Dear Cathy,

Well, this is all the very BEST news ever. It is just a miracle what a turnaround there has been.

I love your doctors. I like that you gave us a bit of hope about the younger doctors. I would really love to have a special card to send to each and every doctor who treats a trisomy child as a human being and not a genetic defect.

Once a friend of mine on Ontario, Canada told me about the great care she received for her 30+ yr old mosaic trisomy 13 daughter from a cardiologist.

I asked permission to write to him to tell him how much his excellent care for this young woman meant to me. He actually wrote me back to tell me how much he appreciated my letter! With regard to to the manner in which he treated the girl, he wrote, "How could I not?"

It made my day to see sweet Annabel up and at'm again. I'm happy for you all.

Barb

Colleen said...

Thank you for this wonderful post. Its just what I needed to hear.

Blessings to all of you,

Colleen

Anonymous said...

A carriage fit for a princess!!!!

What an amazing update! Words do not do justice to how happy we are for all of you!

Hooray for loving doctors! I am glad to know that Houston has some too!:)

Let's have a playdate soon!

Love,

The Bonds

Jill Smith said...

So happy to hear all this great news and to see Annabel's beautiful smiles! God is good!

Kelly said...

so happy that annabel is getting some great help and feeling better! i'm sure she's lovin her new wheels!

Kenzie said...

SOOOO thankful for all of the wonderful care and attention! You are changing the hearts and minds of these doctors and nurses each step of the way and you are making a difference for each family that will follow you- praise God for that and for you! I LOVE seeing that precious face smile. Thank you for the sweet words and prayers for us for Maddox's birthday- it was a nice day overall... eventually I'll probably write about it :) Love you friend and give that girl a kiss from me!

Angie Terry said...

Dear mama,
Your love for Annabel has inspired me as a mother. Next time I get inpatient with my 2 toddlers, i will think of the patience that you must have to raise little Annabel. My very first child was born extremely premature after my doctors kept telling me that i would have a miscarriage with that pregnancy. This was in 2005,the same year Annabel was born. When I look at her I imagine what my Heidi would have been like. For the past 9 years I have been working in Sleep medicine and treating people with sleep apnea. I have completed most classes(in the past) to become an RN but saw no need to continue once I was Registered in sleep medicine because the pay is about the same. Your child has inspired me to complete my RN so that I can help children not only with Apnea but with other health issues as well like Trisomy 18. God sees the love that you are pouring out for this little girl. Bless you and your family always. Thanks for the inspiration as a mother and as a health care professional! Have a wonderful day!

Kathy said...

Thanking God for all that He has done and will continue to do to bless your amazing little princess! He sure gave her the most wonderful family to love, care and advocate for her!!!

After reading the comments from this post I agree with them all! How wonderful that there will be another wonderful nurse out there because you share Annabel's story!!
Annabel, sweet angel, you inspire us all!!!

Love you girls!!!

Alyssa's Mom said...

First off what a cool chair! I'm so glad that Annabel is feeling better. Way to go Annabel, keep showing up them docs! I love seeing her smiiles. A while back you had posted and thought you were rambeling...you weren't!! When you speak from your heart about your own struggles/feeling about the circus of events T18 brings it is very HELPFUL. Just making the statement about not cooking knocked off some guilt for me.

Some days just preparing a meal seems moutainous, I beat myself up over it..not wanting to overlook the needs of the rest of my family ~in small ways or big.

I do hope that our bopsy twins can meet one day. Wouldn't that be something?

By the way Alyssa is on continous feeds overnight too. It use to be formula now it's water. I personally feel the body needs rest and eating through the night depleats the body. Alyssa's nutritionist and GI are against the my feelings but are slow to make changes. So we are kinda moving the process along ourselves. The hope is to increase her volume during the day and even get 1 meal of just solids (orally) and let her rest at night. this is my 3-6 month goal. Alyssa is gaining very well on Peptamin jr 1.5 and if this pattern continues, the GI and nutritionist may back me up on the changes I want. Thanks for the frequent update, love hearing aout your girl!!

Anonymous said...

Hi
Very nice and intrestingss story.