By God's Grace

Quiet and stressLESS!

2012-01-23T18:59:00.000-06:00

Annabel is growing up. Each time I look at her I see more of a little girl and not the baby that I once held. She is going to school most days and has been back into therapy for the last week or so. She continues to amaze and inspire us all who know her!
Sorry for the lack of updates. After our episode in September nothing seems of any consequence to write about. She is still on antibiotic for the c-diff and the abcess. Can't clear this up but we are making slow progress. Her eating is affected by the antibiotics that she takes so very soon I hope to see progress in her eating by her g-button.

The picture below is of our new beach house. We decided to build back since the last hurricane. We are getting excited as it should be ready sometime in April. This gives us something to do each weekend as we drive there to make decisions and see the progress.

Thank you for your continued support and caring of Annabel.

First week of 2012...

2012-01-04T21:20:00.000-06:00

Annabel is at TCH. She has abcess inside tummy right around her new g-tube button. They will be placing PICC line tomorrow to run antibiotics. She also has cold/congestion. I just heard from nurse not the doctors they will be placing her back on TPN/Lipids. I am praying this is just til they get her eating in her g-tube again. Monday was a tough day with vomitting and many dirty diapers. That is all for now...

Today is exactly two weeks that Annabel has been without TPN. These last two weeks were so nice. Sunday when her fever hit 101.6 we didn't run to the hospital worrying about a line infection. It was so nice to just think maybe she was getting a cold or maybe just a virus. Also teo weeks with no central line meant she could enjoy a tub full of water, playing with bath toys and lots of splashing. It wasn't filled with constant itching or pulling her dressings off at any hour of the night or day. Also no weekly bllod draws or time spent each day mixing her new back of TPN. A break from elevated liver levels and a rest for damaged liver. She is so easy to carry around without worries and the extra pump...so tonight I have reason to be sad! So sad that they decided already to put her back on 24 hour TPN/Lipids. My prayer is that this is temporary and that maybe her belly is just suffering from a virus of some sort.

So tomorrow she is scheduled for surgery. I am choosing to remember that many more tmes than not Annabel comes back to the room just fine from surgery. This is not a big surgery but I can't help but remember in September neither was that one. That time she was septic. This time she isn't that sick. I am so hoping that maybe be release either tomorrow if all goes well or latest Friday. Her cellulitis/abcess in her tummy isn't worse today. They are give big antibiotic and watching each day. I am fairly sure that isn't keeping us inpatient. Will update when we have more info.

Happy New Year to all of you!

Can it be????

2012-01-01T18:57:00.000-06:00

Is it really possible that Annabel could be free of a central line in this new year? Annabel lost her central line two days before Christmas. Late Wednesday night the nurse had very weak blood return and no flush. So we gave her fluids in her tummy until Thursday morning when we could go to our local ER. After xrays to determine if there was a kink/or out of place it was thought that it was just clotted. After a few hours they began to attempt to dissolve the clot. With in just a few minutes her line ruptured with a split right up the side of the line. I became sick to my stomach. The person doing the procedure looked up and said this isn't good and indicated that we would probably need to be moved to Houston. Anyone who talked to me during December knew that my wish was to be home for Christmas, not in a hospital somewhere. I knew this was possible with 3 great nurses and myself to care for Annabel. So soon after the line ruptured the doctor came back and said he had consulted the pedi and the pedi surgeon and they were arranging her transfer. I am such a baby, tears started flowing and my mind went crazy as to how I could stay home/local. I tried making some calls to our pediatrician and finally reached her via cell phone.(This is something I just don't do!) I asked her what she thought about trying to get more feeds in with her Elle Care and Pedialyte. We talked about how Annabel was eating a good amount via g-tube and that we would watch for signs of dehydration and if we saw them we could then go to Houston for the central line. I then went upstairs to surgery at our local hospital after being told that our pedi-surgeon was there doing surgeries. He came out very quickly and we talked about our plan. I begged him to just pull her line and give her a chance to try it. He gave us a feeding schedule to try and up each day and night. We declined the ambulance for the transfer and they sedated Annabel and he pulled the line. After watching her for an hour we picked up our sweet girl. No line in her chest to watch out for. That evening she got to sit in her bath with as much water as she wanted. She splashed, smiled and loved every moment of it. At first she was tentative about being in this much water and it being ok to splash. Each days since then, this is her favorite activity.
I am realistic and realize this maybe temporary. Just Tuesday, Houston called and said we had to come into their hospital for a Chem 10. All the way to Houston just for this simple blood test. They felt sure that her numbers wouldn't be good. We were watching very carefully for dehydration and saw no sign. I was told that she may need to be admitted for placement of her central line. I had to go through the ER and when I got into a room quickly in the ER I was told they were going to admit her. I said what??? no Chem 10 to see if things are out of the normal ranges. The doctor said they were getting her a room and the lab would be done upstairs. They said I could feed her until 4 a.m. then she was be on IV fluids til surgery. For a while I resigned myself that this was inevitable. The next morning on early rounds I ask the resident how her numbers were and he said all good. So then again I began asking why??? Even her GI says that this line must come out that Annabel gets so sick and that a central line could be what takes her life. This last year has been so much worse for Annabel than any other year. Just in September/October we spent a week with the doctors saying each day that she wouldn't survive what was taking place in her little body. But she did! It brought us all to our knees about the reality of life with Annabel and without her...
After talking with the doctor making rounds we were discharged with a feeding plan. When I called to schedule her follow up with GI we learned this was not what was discussed on consult.
For now Annabel is really close to what they want going in her belly. She is happy and feels very good. Annabel has always experience gagging/retching and vomiting. The only time this doesn't occur is when she is totally TPN dependant (no feeds in her belly)! So yes with us pushing her tummy with more feeds she is retching and gagging with some vomiting. We are doing her weight daily and she is maintaining her weight.
Without a central line Annabel doesn't scratch til she bleeds and she doesn't grab at her central line and rip her bandages off daily. We do not have to medicate her with benadryl for all the itching and each time she has the slightest fever we are not running to the ER or doctor. Our prayer is that she can stay without a central line. She is getting a cold as of early this morning and her g-tube site isn't looking good. It is inflamed around the site and something is very hard right behind and around her button causing her discomfort.
So enough about sweet Annabel. We had all the family home for Christmas which was really nice. Now that Derek is married he splits his time with Linzy's family. We are blessed that they are local so it all works out. Tara was home for Christmas but has headed back to get ready for law school to start up again. Carly and Colette will be home for another 10 days then head back to their school. Tyler should be attending school here locally and still does his drill once a month in Houston.
I want to thank everyone who has commented, emailed, called or texts this year. Your thoughts and prayers are so appreciated. It is so hard to believe that this year in just a couple months she will be turning seven. We have been blessed beyond what we could have ever imagined. She has brought so many people into our lives just through her tiny little life. My prayer for all of you is to have a very blessed New Year to all of your families.
We have also decided this year to rebuild our beach house. It should be ready by late spring so we are hoping to spend time there during the summer.

Simple message...

2011-12-19T10:49:00.000-06:00

Our gospel in church today was simple. I love a simple message especially with how I become distracted with Annabel during the Mass.
This last week of Advent we need to all slow down and realize the real true meaning Oh wait, we should always remember this real true meaning! But if I am honest I get all crazy with buying the right gifts, making sure I have exactly the same amount for each child no matter how old, trying to keep up with my house and trying to be there for all the family. I am not going to let this week/message escape me this year.I still am amazed how much Annabel's life has touch us all. Simple, happy and full of joy....
Just a few picture with our Santa at the mall this year on her class field trip. She was a little reserved this day as she was hurting.

Pictures and update in the life of Annabel...

2011-12-06T21:34:00.000-06:00

I want to begin by thanking our sweet Jesus for answered prayers so far. My prayer was that she would stay out of the hospital for December. I know it is early but I am grateful that we are managing everything from home. I am so lucky that I have three great nurses that help me out. I wouldn't be able to do it without them.
Overall, Annabel is doing ok. Most days she is able to attend school and her therapy. Due to her liver not doing so great she is down to only 12 hrs. but it may not last. She seems to need more fluids. The 12 hours is new and we will see how this hold out. Her fevers are still considered her normal low grades that range anywhere from mid 99's to mid 100's with the occasional 101. But we aren't medicating this temperature and we do blood cultures most weeks to make sure the temperatures are harmless. Annabel's liver enzymes range anywhere from the mid 100's to the 900's. Up one week and down the next. She itches almost all the time. Many days she rips her dressings off with the itching and we have double the dose of Benadryl. We are assuming the TPN is what is causing her liver issues which in turn cause her itching. She has to be watched constantly for the itching. I am thankful for the 3 nights of nursing so I can truly sleep and not worry. Annabel has been free of IV antibiotics for over 2 weeks and this is a record in a very long time. (Shhhhh!)
Our Thanksgiving was great with the family over at our home. We love how busy the house is and we get to spend time with my brothers family who is from Dallas and my sisters son Corey and Molly from Austin. Hoping that each and everyone of you had a wonderful Thanksgiving.
You can see from the pictures that Annabel is happy most days. Somedays she is just tired from maybe not sleeping so well. She desats so much now at naps and nighttime. So her sleep can be quite interrupted. She does sleep with oxygen and this helps.
Thank you so much for continued prayers that Annabel stays infection free from central line, UTI or really anything. My biggest Christmas wish is for Annabel to be in our home for the holidays with all the rest of the family. Have a wonderful Christmas season and let us not forget the real reason....

Happy 24th Birthday Tyler....

2011-12-01T22:18:00.001-06:00

Tomorrow my youngest son will be 24 years old. Where did the time go... He was born 8 weeks early and so tiny when we brought him home. He will be at drill tomorrow until Sunday so tonight we celebrated his birthday...

A very special visitor...

2011-11-27T17:24:00.000-06:00

Today Annabel and I had a very special visitor stop by. Brenda is the mommy of a very beautiful Angel baby named Brianna Botts! Brianna went to Heaven when she was 28 months old. We were able to meet her parents and Brianna in Houston (her father had business in Texas) and spend time together. It wasn't too long after that Jesus called her home. She was also born with Trisomy 18 and passed away from Pulmonary Hypertension. She blessed so many all over the world. Her blog address is http://www.briannagiveshope.blogspot.com/. Brenda and I have tried to meet up a couple of times but it has never worked out until today. She came to Texas with a wonderful friend and they were so nice to bring her by to visit. Thank you so much for making this possible. AS you can tell by the photos, Annabel loved her visit.
The following photos are of Brianna and Annabel back in 2009.

Annabel says "Thank you..."

2011-11-11T17:45:00.000-06:00

Annabel wanted to tell her brother, Tyler, and all soldiers thank you for their sacrifice and commitment to our country. If it were not for you, we would not be able to live and enjoy our freedom.

What kind of g-button do you have?

2011-11-09T09:48:00.001-06:00

Annabel has a Bard mini one non-ballon gbutton. She is having this changed out very often due to leaking when we open it. It doesnt leak below it just when opened. If your child has a g-button please share what type and why you like it. I realize the balloon buttons are easy to change out and have seen it done, but I like not having to worry about it coming out. Thank you for any information you can offer.

A very busy day and a tired little girl...

2011-10-29T21:28:00.000-05:00

Today was a very busy day for Annabel! First we met our cousin Callie who came in from Oklahoma and Carleen from Houston. We met for lunch with my mom, my godmother/aunt Eva, my sister and two of her high school friends,Candy and Michelle. Tara, myself, Annabel and Donna our nurse had a great visit with family. She was in her element with all the attention. Thank you Callie for coming in and making time to visit with us!
This evening we attended the ARC Holiday Cards for a Cause kickoff dinner which honored the artist of the Christmas card that went on sale today. This was Annabel's second year as an artist. It is a wonderful evening and again she was showered with so much attention. Ms. Ann, her teacher who always helps her create her card was there, and sat right next to her, so you can imagine how happy Annabel was. I actually brought my camera to lunch, but failed to remember to take pictures with Annabel's family. But tonight I remembered to take pictures even though they aren't all very clear.

Annabel the Artist

Annabel got to meet Jay Bruce, who plays for the Cincinnati Reds

Annabel enjoying Ms. Ann's company at dinner

Annabel's Christmas Card for 2011 (the letters PEACE are her little finger prints)

Annabel being honored as an artist being presented with a framed copy. A very proud mommy!

Annabel getting a HI and some sweet attention from one of her pediatricians Dr. H!

Surprise visit at school and more pictures of her week...

2011-10-28T17:49:00.000-05:00

Tara decided to come home for a visit this weekend. She had two classes cancel and came in early and was able to surprise Annabel. Tara has not seen Annabel since she was in the hospital there in Houston.
Annabel's class also visited the pumpkin patch for their field trip and then the sunglasses picture from today was for drug free week...

School days in Pictures...

2011-10-25T21:29:00.001-05:00

Annabel dressed in Pink for PINK OUT Day for Breast Cancer!

Went to school all day and had a great day!

Life with a central line....

2011-10-25T10:14:00.000-05:00

Annabel is doing better, getting stronger everyday. She goes to school most days and is able to basically stay all day. School is such a happy place for her and I am very blessed that she is so loved and well cared for by everyone.

She is getting back into all her therapies. I am also so lucky for her dedicated therapist who continue to work with us even though Annabel misses so many appointments due to her illnesses.

I ccontinue to have three great nurses, Rebekah, Debbie and Donna that makes sure she gets great medical care and so much love and attention. I feel guilty so much of the time that I have so much help, but Annabels needs have changed so much with this central line...

Central lines....what can I say? It fills my mind almost daily. My feelings are so strong that she must get off of this central line. The reality is that she cannot survive without it. So the very thing that sustains her, can so easily take her from us. It has been 18 months, 1 1/2 years of TPN/central lines. We thought this ride would be so brief, basically to rest her gut.
So just this past Thursday night when her fevers rose to 102 and she began to have chills, I froze. Mel looked at me and said you better go pack your bags. I really couldn't imagine going back to Houston and the thought of what Annabel has just gone through. Annabel was very congested and my prayer and wish is that the fevers were coming from the cold/congestion. So she made it until Friday morning and we went to see Dr. B. We did blood cultures and by yesterday we knew her blood was clear. Thank you, Jesus!

I will never stop praying for her tummy to work again, but the reality is she probably won't be able to eat enough to get the central line removed. Her liver continues to be sick. This will not improve as long as she is on the central line.

I have to keep my thoughts on the fact that we have so much to be thankful for with Annabel. She continues to show us how to live life. It is simple in her book. She wakes with a beautiful smile and a heart that overflows with goodness and love. If Annabel could speak I know that she would thank everyone from her family very close by and far away and all the friends who faithfully continue to pray for her from everywhere.

Just enjoying home...

2011-10-13T11:45:00.001-05:00

A brief update to say Annabel is getting back to herself. yippee! On Monday she finished the weaning process of the Ativan for withdrawals and we are so happy.

She returned to school yesterday for 2 hours and will go longer today. She will also attend speech and PT therapy this afternoon and do what she can.

She was tested last week for blood and urine cultures. The blood grew nothing (very thankful) and the urine grew Klebsiella. This was the bug that was in her blood when she was in ICU. She is now on Gentamycin IV's at home.

Overall, I am feeling like Annabel is getting back to herself. So full of smiles and joy! It is so hard to believe that just a few weeks ago that she wasn't expected to pull through. With each smile and sweet noises she makes, I thank Jesus that He has granted us more time with Bella and we are beyond grateful.

Yes we are home...

2011-10-01T12:30:00.000-05:00

I guess I thought I posted that we were released. She came home mid-week and we are so happy to be home. She has slept well in her own bed. You can just tell she is so comfortable in her own place.
Annabel is still needing prayers. She is still very weak and we knew this recovery wouldn't be quick. She continues to run fevers everyday. They stay mostly 100.5- 100.9. The reason is unknown, but before being discharged they ran blood cultures and it was no growth.
We are doing some feeds but her formula runs straight through her and looks like she isn't absorbing. She is still having to be weaned off the medicine. She is taking Ativan and she seems so sad at times during the day. This is very unlike Annabel. Her voice is beginning to come back but sounds like a tiny kitten. They weaning will be discontinues on October 10th and I cannot wait. Her breathing pattern are still different where it looks like she is uncomfortable with her breathing.
We will be seeing her GI doctor Tuesday and hoping for more answers as to the fevers. These fevers were happening prior to her going into the hospital for a couple months.
I will post later on this subject, it isn't pleasant to speak about. But is very obvious that Annabel has stool coming from her from opening. I have asked doctors to look into this and was told this was very unlikely but it is happening so often. If this is an actual problem Annabel will always be infected. This could be an explaination for the continued UTI's.

Happy 30th Birthday, Derek!

2011-09-29T22:42:00.000-05:00

Tonight we celebrated Derek's 30th birthday! I can't believe he is 30 years old. I wanted to post a few pictures when he was a baby. What a cutie and now all grown up and a husband...God is good!

I am thankful for his mommy-in-law Cindy and David,who celebrated with a home-cooked dinner and homemade red-velvet cake for his actual birthday. His birthday was September 14th and that was the day that we called the family to the hospital after being told Annabel probably wouldn't make it. My brother also drove in from Dallas and took my family (not me) to eat a nice dinner in celebration of his 30th. All of the kids were there, his meemaw, and aunt Lera. His cousins,Shauna and James. Thank you Uncle Carl!

Fingers crossed...

2011-09-26T22:32:00.001-05:00

Today began with Bella waking at 3a.m. And not going to sleep until 1:30 p.m. She also had a fever of 100.8 which isn't a big deal unless you live in a world of central lines. She is also not doing great with the withdrawals of the drugs for last two weeks. So when the doctors made rounds I asked why were we staying in hospital and he answered to get her feeding again and to wean the Ativan. I had already decided if this is all that was keeping us here I was going to asked to be discharged. I explained to him that we had more experience with getting Bella to eat, so we had that covered. He couldn't tell me how long the Ativan will take but that I couldn't just opt out of giving her this. It is being given into her g-tube every 6hours and I am left in the room with all her sadness. She can shift from pure joy to complete sadness and can't stop moving her legs. So I said give me the weaning regime and I and my great nurses can handle this and at home we can provide many good distractions as not to depend on this medication longer than necessary. The only hold out was the low grade fever. He wanted to draw blood cultures and have us stay til results were in which takes 48hours. I agreed to stay 24 hours until preliminary results are in and I agreed if anything grew after that I would come back and readmit. Annabel has always grown something in the preliminary cultures. Of course, if she gets worse we would not want to be discharged. There are so many factors that play into Annabel eating again the amounts that she was eating when admitted. They are going to watch her dilated bowel loops as we all agreed these were probably present before Bella became I'll this go round.
When I get home I tend not to post as much. If she continues to improve then there isn't as much to report.
I want to take this time to say how much I appreciate all of your prayers. These words are not sufficient and do not begin to express my gratitude. Annabel's life has taught me so very much and she has showed me so many wonderful people who pray so faithfully for her. It is very hard to admit that at times I was just to tired, to hurt or whatever to pray. But knowing how many continued to pray for her, let me know she was covered, wrapped up and held so tight in our Mighty Gods hands...thank you, thank you

Just hanging out...

2011-09-25T22:03:00.000-05:00

Not much really happened this weekend. It was spent letting her rest, wean off the medication from being on the vent. They are using Ativsn and I am hoping that they will discontinue this also. Today I placed her in the wheelchair for a walk and when done she was exhausted and slept 3 1/2hours. Tonight they will begin feeds at 10ml. per hour through the night. There is also some concern about the large dilated bowel loops. They will need to have TPN regime decided with nutrition so I would love to go home soon. We will see. Thank you for continued prayers and your comments via email, text messages, comments on blog and Facebook. I have posted picture on Facebook with my phone but I have not figured out how to transfer them to blog.

Emotional return...

2011-09-23T23:28:00.000-05:00

Today we returned to the 12th floor. I don't think I was prepared for the emotions that hit me. The first two doctors who came to visit after seeing her name back on the board commented on how fast and how impressive her crashing was. after being moved to ICU for four days in a row we had to talk to different doctors about how far and what we wanted to do for Annabel. we were talked to at length about her three failures and that would be it. The last 11 days are a blur and sometime really don't see real. When Tara came by the hospital this evening she mentioned the same exact thing about arrive last Monday afternoon to a room and hallway so full of doctors working on her. She also said what really happened but I just don't want to think that deep just yet. She is with us and I want to not waste anyway not being grateful.

We are in a regular room being monitored on oxygen. She is been weaned off the fentynal/versed and having some withdrawals. She is being given Ativan which helps. They are not beginning feeds due to the large dilated bowel loops and sounds like with the weekend we won't be dealing with it either.

Extubated...

2011-09-22T20:28:00.003-05:00

Yes she was extubated and still doing well! I think back a week ago and we were all here because they thought Annabel wouldn't pull through. Through Annabel, I continually feel blessed. Blessed by all you who love her, pray for her and celebrate her sweet life. Blessed because God has allowed us more time to be with Annabel here on Earth. I could never begin to deserve what we have been given through her sweet, sweet life.

Updating my last update...

2011-09-22T11:06:00.000-05:00

Updating my last update:

Ok enough of this roller coaster ride. Surgery is going to reevaluate with xrays in 6 hours. The head critical care doctor really doesn't think she will be going to surgery today and she feels we need to try to begin intubation. So I maybe holding my sweet angel baby by this evening. An answer to prayers

UPDATE:
The night was long and hard. She had more versed and fentanyl than ever. The say she has ICU psychosis, ugh. 4 nights of no sleep, although she can sleep daytime. We were hoping for extubation this morning but with a chest xray it seems she will be heading back to surgery. They are thinking somewhere she has a perforation. I am quite sure I will never be given more than I can handle, but with lack of sleep my emotions make me wonder. All I want is to hold her and let her know I how much she is loved!

Out of surgery...

2011-09-21T21:34:00.001-05:00

Annabel is out of surgery and back in ICU. I am praying they begin the exubation process tomorrow. I need to hold her so bad. She cries silently due to the tube down her throat...breaking a momma's heart. Thank you Jesus for returning sweet Bella back to us with no drama tonight. It took longer because the can find no IV access so they had to leave in femoral line. They did get central line in chest and neck area. Thank you to everyone for all your comments.

Waiting to go to surgery...

2011-09-21T15:58:00.000-05:00

Annabel will be going to surgery soon. I know she is totally in HIS hands so I am choosing not to waste my energy on worry. Thank you for continued

Update...

2011-09-21T10:27:00.000-05:00

The CT scan showed unchanged so nothing should have affected her brain during this illness. Yea!
Scheduled for surgery either today or tomorrow. She is doing time trials on ventilator today and if she continues to do well then possible extubation after surgery. Asking for my prayers concerning sending her backin surgery since there is questions that did this happen during surgery concerning overload of fluids.

Waiting...

2011-09-20T13:10:00.000-05:00

Things have slowed to a crawl concerning the vent. We are waiting for scan of her head to see if something happened when she was so sick. It has something to do with her 02/carbon dioxide levels. I wish I understood. I an waiting to ask more questions if I feel something truly did occur. So here we sit praying that nothing happened.