Friday, October 31, 2008

Our little Bumble Bee!

As promised here is Miss Bee! I put it on for two minutes, took the pictures and then off it came. She gets very warm and fast. I'm glad she got to at least put it on. Okay and I also had to get into the spirit. I was a Lollipop girl! See who says you can't have fun in the PICU? Not me.....








Also Mary Poppins came to do an art project with Ava this afternoon. She helped her make a very nice mask! She loves stickers so as you can see it is filled with them. We had a great, restful day! Thanks for stopping by!




~Terri

"Happy Halloween!"

Well today is a great day for more an one reason. First Ava is healing leaps and bounds! And well second I love Halloween. It is my favorite holiday! I went home last night to go to Lexis and Emeline's school conferences. They are doing very well considering all that they have been through in the last 4 weeks. Yes and today is Ava's "4 week mark" of becoming sick. It seems like a thousand years literary. It feels strange to go home because we aren't all there. So I did get some of Ava's favorite things, like her couch and her toys. I think that once she starts feeling like getting up and moving we won't be able to keep her in one spot.

Yesterday they took a picture of her lungs and they look pretty good. Actually the best since being put on the ventilator. Her right lung has fully expanded and her left lung looks fine as well. They still think her right lung does all the work but I beg to differ on this opinion. I'm just overjoyed that she is off the vent and doing well all on her own.

So we can't feed her until they do a swallow study test. This will determine if things are ging down and just where they go and end up at. The goal of course is for them to go from stomach to small to large bowel and then OUT! BUT we may still have problems with her fistulla sealing and healing on it's own. See they are really watching because some times they close on their own but then cause a bowel obstruction. This would not be good. If it does this then we will not be able to feed her until after her final closure/fix her surgery.

The good things that make us think her fistulla closed and is doing fine is that her stomach drain is putting out very minimal drainage. Her tummy has gone down about 2 cm. She has had no fevers! Her numbers are returning to normal, which means her body is healing inside and out. To give you and example, on Tuesday they took her blake (stomach) drain out and today I looked at it, during dressing change, and it has tissue completely covering the bottom part of it. The skin has closed half way around it. I was shocked! A good shock. Another wonderful thing is her pectus is back! I know this sounds strange but I missed it. I love to see things become normal, well her normal.

She decided on Wednesday night that she had enough of the dressing covering her head and so off it came in one swipe. I was sitting right by her bed and was shocked that I couldn't stop her in time. The good news is that it looks really good. Her arm is looking better everyday.

She has been coughing a little more. She has been sounded plugged up last night and this morning. That to me is a good sign. Things are drying out.

I just finished giving her a wash clothe bath. I brought her Aveno from home and boy does she smell nice! Her little head is so adorable. The girls are coming up tomorrow so I can't wait. They will be going to another "Child's Life" class from 10-1. The class will talk about, worrying. Perfect for them at this time.

Ava is down to one antibodic, one antifungal medicine and her lipids and fat drips. Can you believe this? I am amazed at how she has turned around in just a week. She amazes me over and over again.

Please keep the prayers coming. WE know our time here in the PICU is drawing to an end. We love the staff here. I just have to say, Thanks you to Kim, she is so nice and helps me whenever I look confused, which is a lot. Our nurses are so wonderful, caring and very supportive. They are always stopping by to see how Miss Ava is doing. I think next week they will probably move us to the pediatric surgery floor for her to recover the rest of the way. I am very concerned about the germs all over again. I suppose I will have to make some very cute, "Wash your hands" and "No visitors" signs. Oh I think I will go crazy with all she could catch. My dream would be to be discharged from the PICU but that is all it is a dream!

She has come a long way but we still have so much to work on. She needs to be able to walk again and to EAT! Hopefully we won't be her forever. God has been so generous to us and we thank Him for all three of our beautiful daughters.

Here is some pictures of yesterday. The girls are holding Joey and Josh's new puppy, "Patches!" He is adorable!




Now here is a few from yesterday. Thank you Amber and Sienna for the knitted head band and horsie. She looks so cute in the headband.




Now here are a few from today. Yes her costume is not on yet but here is a picture of it. Why I don't have it on her now. I'm waiting until later. The kids are going to come by her window and we want to put it on then.



These are her about an hour ago. She loves her baby. Their heads look the same! So precious, huh?





Okay one last picture for Halloween today. Here is Miss Ava's "Halloween Eyes!"



I also forgot to mention that I did video her extubation so if you want to see it you have to go back to the, "She's extubated" post. It is really neat to watch. She hold up her "Little People" cd so that they can't see her face. She is always a step above them you know.

~Terri

Wednesday, October 29, 2008

And the story goes on.....



Well we are still coming along. Ava is a little on the sleepy side today. She is very junkie sounding and is getting a tad bit better at coughing. I think she is still in pain. We both held her in today. I think she gets a little motion sickness by moving her. Last night we tried to get her to take another wagon ride but she kept shaking her head NO! So we let her rest. She has no interest at all in standing. We are working with her but know it will take time.

The PICU is extremely busy right now. Last night was really sad, the child that was two doors down from Ava's room passed away. The nurses wouldn't tell us anything and we didn't expect them to we just knew. This is the second death in here since we came. We were close many times here. I just thanked God all night for letting us keep her. This PICU is really stressful. When you walk off the elevator your heart sinks.

So anyway enough doom and gloom, Ava is doing good. She is such a precious little girl. She toughs out the pain and we have even seen a few smiles. I have not caught them on camera yet but I will soon! The picc line is GONE! She had her stomach dressing changed today. This happens on Monday, Wednesday and Friday. I like this because it gets looked at often. I don't want things hiding. We have had enough of that!

So that is about all. I did throw together a video of Ava's PICU fun. ENJOY!

Tuesday, October 28, 2008

Lots of progress.

Well a lot has happened in just one short day. First her belly is going down slowly but surely. It is still large but it is looking better.

The skin doctor was here this morning and she removed the mesh that was covering her skin graph. It looks like it is healing. I am to put mineral on it many times a day to soften and loosen the skin so it stays moist. Her head is healing and her hair is growing much faster thatn I expected

She has been extubated for about 27 hours now. Her blood gases were running in low 50's and still are but all her other numbers are looking great and expected with what she has been through. She stays between 93-98 percent. Her O2 was turned down this morning but then put back at 3 liters this afternoon.

Yesterday she was really labored in her breathing. Her nose would flair and her pectus (large indent/cave in) in her chest would sink way down. Also er head would bob up and down while breathing. BUT overnight she seemed to turn things around. It could have been that she stayed up all night playing with her Daddy. We think she might have her days and nights messed up! I know Daddy doesn't mind. They read books, look at the musical cards and watch Barney. Here is one of Daddy's pictures of their adventure in the middle of the night.



Another HUGE accomplishment was that she got her chest tube removed this morning!!! YEAH! That is a great sigh of relief. It hurt her really bad but she coped well.

Now as for coughing, she is not great at this at all. We have been suctioning her out since none seems to come up on it's own. I know her throat hurts but she must get it up. I decided this morning to try ice chips. They will relieve pain in her throat and maybe let her cough without too much pain! It worked. The docs thought that blowing bubbles would do the trick but they don't understand she is still too little to do that. She is learning.

So this morning all we did was play. She loves to watch bubbles so I blew and blew. Then it was her turn. She is so cute!







Thanks for all the prayers. I'm praying that Miss Ava has turned this around. PLEASE Ava no more drama!

~Terri

Monday, October 27, 2008

Cough and cry prayers please!

Okay so here is the scoop. Ava was extubated today at about 12 noon. I was very nervous, worse than ever before.

She is very sleepy. This is not a good thing. We need her to cough and cry to get all the junk out of her throat nose and especially her lungs. Her stats are hanging in there. Her O2's were from 94-100. Her heart rate varies quite a bit from 125-180. Her respitory rate is between 17-48. I know. Her blood gases have been good so we pray so hard that she coughs and gets this out. We don't want to go back on the vent. This would be devastating.

After the tube was taken out the musical therapy guy came in and sang her songs very quietly and played his guitar. It was the best. It made me cry but then I sang along. Very fun. I can't wait until he comes again.

Ava also went on a wagon ride around the PICU. One of our favorite nurses Erin decided Ava needed to get out. It took a good half an hour to get ready but it was so worth it! Thanks Erin for caring so much for our baby! Her O2 levels stayed at 100% almost the entire wagon ride!We also saw another favorite nurse Brenna on our ride.







Her cry is so precious. It is so small and so course. It breaks my heart. My poor baby. I did give her back her pacifier. She needs it to feel secure.

So please pray that Ava stays strong and keeps breathing and doesn't get tired out. She was starting to breath faster but now is getting more regulated. I am optimistic BUT at the same time I am very concerned. I think her throat is raw from the breathing tube and it hurts her bad to cough or cry so she just avoids doing it. She has to get it up. They have been suctioning her with a soft long flexible hose. It is working but it would work better if she was able to do this on her own.

Can anything ever be easy? I am thankful that she doesn't have that darn old tube. She also got her Blake drain removed along with her stomach dressing changed. Wow is that hole big! Mercy me can I handle all of this? Lord please help us!

~Terri

She's extubated!

Hoorah she is doing great so far. Keep the prayers coming. Her labs just came back good , so we are off to a wonderful start! I'll post pictures in a little while. I'm going to hold my baby now. I have tears in my eyes just typing this. I haven't held her for over two weeks.

Here is the video of her being extubated.



Thanks again for your love!

~Terri

Pray for this mornings extubation!

Well the time has almost come for the tube to be taken out. We all think she is ready. She looks rested this morning and we are praying this time it is for good!

Please tell the big man upstairs we need his special love and touch in a few short minutes. Get your prayer hands out everyone!

Brian and I are on pins and needles. Well actually I am Brian is trying to nap until the ruckus starts happening.

"Oh Lord we come to you again this morning and we ask that you hold our sweet daughter in your strong and loving arms. The extubation at CHOP I remember so clearly my words to you in that moment of prayer. I simply said out loud, "I believe, I believe. Please calm my heart and let me be at peace with all of this around me. We love and honor you in Jesus name, Amen!"

~Terri

Sunday, October 26, 2008

More Gas prayers.

Well nothing much has changed. She let one rip this afternoon in the face of one of our favorite nurses Jen. It was so funny! We just need to keep it up. Her tummy is still very large so keep the fart prayers coming. We all know how it hurts to be bloated. Pain medicines can't take away this uncomfortable feeling, unfortunately she has to just let it out herself.

Her xrays today looked wonderful.The best they have looked in a very long time! Tis is grand news. So as for extubation I am not saying one word. It will come when it comes. I will say the weaning process has gone smooth so far.

Lexis and Emeline came up today. It was so good to see and hug them. I did take them aside asd explain to them about Ava's hair. They said Mom we know Grandma H already told us. Well okay I said I just didn't want you to be scared. Her hair will grow back and I just love her little round head.

All in all we had a good day. We think she is getting her days and nights mixed up. I open the blind but still she sleeps during the day and is wide awake for her Daddy!

I want to thank my Mom and my Aunt Janice for bringing the girls up here tonight. Dad thanks for the Chicken and Rice home-made soup. It was fantastic:)

Please everyone keep the gas prayers and the get well prayers headed Miss Ava's way.

Also keep praying for Nayeli. The doctors found some extra fluid built up around her heart and lungs. Oh dear God please let it be something simple and fixable. This little girl needs to get well, soon! Liz and Shane we feel for you. None of this is easy. Lean on each other and pray out to God. He heals! He IS able!



~Terri

Praying for farts!

Well so the latest is that this is all gas. We hope that it is nothing more. The good things are that she has no fever and her numbers look fine. She is sleeping right now and her heart rate is 118. I don't think I've ever prayed for farts but Hey Ava is unique in every way possible. I thought you might enjoy seeing what we did this morning. Ava loves to put on her lip therapy treatment. A girl must stay pretty even when one doesn't feel the part. video
This next one is called "Mommy physical therapy." She loves all her balloons. video

She doesn't seem too uncomfortable at the moment. I just worry that this may be something worse. I have my doubts but I'm praying it is only gas.

"Okay Ava you want to hear too?"
Ava putting on her lip balm. Funny thing is more goes on her tongue than her lips! She was wide awake this morning and we read books, put together her wooden puzzle and we sang songs. Oh yes and we watched Elmo!

Please continue to pray.

Quick update on baby Nayeli. She is doing well. She had her repair surgery and so far so good. This CDH is such a critical thing. The road we parents travel is truly a living nightmare. I pray that things settle down. Liz and Shane you guys keep up the good work. We are here for you!

~Terri and Brian

Saturday, October 25, 2008

Gas!

The doctors think it is gas. The xray shows a LOT of air in her small bowel. She was passing gas all day today until about 4pm. Then they boosted some of her pain meds that were not Narcotics to help with the weaning process. That also may play into factor here.

PLEASE pray it is only gas. Can you all say, "Let some stinky stinkers, Miss Ava!"

We are really praying this is othing serious. If something changes or maybe in the morning they will do another CT scan to find out more.

I'll keep you posted.

Thanks in advance for the chats with God about our "Drama daughter." Tell God enough problems for one little girl. When this is all over with and she is a teenager we don't expect any trouble from her at all.

~Terri

More Ava Drama!

Well we were thinking all was good. I went to uncover Ava and her tummy was huge. I measured her and she is up 4 cm since this morning. "So in comes the doctors in comes the nurse incomes the lady with the alligator purse." Sorry I have to crack a little humor or we will die of being fearful of what is next.

No really we are waiting for Surgery to come look at her. Please pray it is nothing major. The good thing we can think of right now is that her tummy is soft still.

Oh how I want this nightmare to end. I hate this drama. We thought Friday was passed and that we had a free ride into Saturday. I guess Ava decided she needed more love and support. A princess will be a princess.

~Terri

Minnie Mouse? No it's Ava!

Miss Ava dressed up a bit today. She is doing well. She stayed awake most of the night with her Daddy. This morning she was sleeping but now she just peeks her eyes open ever so often. I have the blinds open to let in all the gorgeous sunlight in. What a beautiful day!


Here Ava is lounging out this morning. Grandma made more wonderful blankets for Ava to sleep on. She is one lucky gal!

So as of now we are not sure when she will be extubated. They are wanting her to be a little down on her Narcotics first. We are fine with waiting as long as Ava is not uncomfortable. Yesterday we finally ended the Friday bad streaks. She didn't have any problems. She road the cdh monster like a kitty cat!

Here is Ava's new skin. It is healing nicely.
Grandma and Grandpa visiting Ava last night. She cried when I told her they were going to leave. It broke their hearts. Her sore on her head is where they took the skin from there and put it on her arm. Please pray everything heals as it is supposed to. We don't want anymore problems with this burnt arm issue.

So we wait again to see when Ava is ready to be off the ventilator. The girls will probably not be coming up this weekend. They are going to a Halloween party today. Then they will stay with my Mom and Dad tonight. I miss them so much. We still have not told them about Ava's head. In time.

Thanks for your support.

~The Helmicks

Friday, October 24, 2008

Princess Ava

Ava had a very good day. We love steady! See Fridays always concern us. Her worst days have been on Fridays. So far so good!

Right now she is getting her 7th blood transfusion. Her count was a little low so on we go! Those of you that know me will think to yourselves what can Terri do with this part of the process? Perhaps I will have to have a blood drive in Ava's honor. How many would be willing to give blood for a baby? Okay let's get her out of the hospital first. I loved doing her Awareness Walk. We will continue that each and every year.

So as for extubation, we are going to wait a few days. Her meds are still pretty high and the doctors are waiting for her to tell them that she is awake enough to breath all on her own with no threat of exhaustion. The last thing we want is for them to have to put the tube back in her throat.

Today they changed Ava's stomach dressing. Wow was that ever gross. I don't really like gorey things but in the case of my daughter Miss Ava I have put all other things aside and I have to know what is normal and what is not. SO I must look! Yikes! The old dressing got stuck on a suture and wow did Ava panic. It looks a lot better and less bulky.

I want to thank the Billheimers for the beautiful bracelet. Mindi it is out of this world and HOPE that is our Ava! That toped my day! Here is the pictures of her adorable bracelet. Thank you Denise for the beautiful angel beenie. Also this is Ava very comfortable. She's not so lady like here.





Thanks again for checking on our sweet Princess Ava.

~Terri

Oh how Marvelous!

Miss Ava doing lots of heavy duty thinking!Mommy posing with her Ava.
Ava still can't seem to let go of your card Whitney. She is in love with it!

I can feel it! Good things are coming our way!

I was taking my shower this morning and an old song popped in to my head. I grew up in church. We went ever Sunday morning, Sunday night and every Wednesday night and anything special in between. Church and Gos is where I get my need and love to sing. Well this song came to mind and I just started singing. I couldn't remember all the words and some of the verses got put into the wrong order. See I remember the words as I go along. Wow were the words exactly what I needed today. Yes I have been down a little bit more than normal. It is so hard to believe when you constantly are getting hit back down, when horrible things don't stop. I saw a light yesterday for the first time and I really feel she is going to be okay.

See when you are hurting and are frustrated you question God. That is only our nature. Why would God allow this to happen to innocent little children? Can you imagine the pain God felt when His son was being crusified? His own flesh and blood was being beaten and humiliated in from of millions and yet He knew it was all "part of His plan." It had to happen. The logic was there and God knew what was to lie ahead yet He watched as I watched Ava suffer. The pain is almost unbearable at times. Here is the words to the song. God calmed my heart this morning and I feel truly blessed.

Here are some of the words.

Oh How Marvelous, Oh How wonderful and My song shall ever be,
Oh How wonderful, Oh how marvelous is my Savior's Love for me.

He took my sins and my sorrows, He made them His very own.
He took all the pain to Calvary to suffer and die alone.

Then with the ransom in glory His face I alas shall see.
It will be my theme through the ages, to sing of His love for me.

God works in mysterious ways, doesn't He. I believe He put that song in my head and planted it in my heart. He cares. Which reminds me of another song.

Does Jesus care when my heart is sad, too deeply for merth and song,
As my sad heart aches til it nearly breaks, Is it awe to Him does He see?

Oh Yes he cares I know He cares, His heart is touched with my grief.
When the days are weary the long nights dreary I know my Saviors cares.

Does Jesus care when I've said goodbye to the dearest on earth to me.
As my sad heart aches til it nearly break, Is it awe to Him does He see?

Oh yes He cares, I know He cares. His heart is touched with my grief.
When the days are weary the long nights dreary I know my Savior cares. He cares!

Wow what a powerful song! Songs always help me. "God help me to see the positives and not so much the negatives. My heart is open. I give you myself. Let me do your perfect plan and will. Ava is only ours to borrow we know that she is yours. We promise to love and watch her as long as you allow. Thank you for letting us see that sparkle in her eye and the warmth of her touch once again. Our minds are over oyed with her progress the last few days. She is such an inspiration to me. Thank you for letting us be her Mommy and Daddy. We love and honor you today and always. In Jesus name Amen!"

They are trying to decide what the best way is to get her off the vent. There was some talk this morning of giving her Propofal to sedate her for about 12-24 hours to help with weaning her medicines down just a bit before extubation. (If you have any words of wisdom about this drug please let me know. I love to hear your experiences.) I will admit I am nervous about doing this. She needs to come off the vent but we are concerned that the dose of meds she is on might hurt her respitory once she is breathing on her own. I personally think she would be alright still on the meds and coming off the vent but they are doctors. We will see. So the goal is to get her extubated possibly tomorrow.

Right now she is watching Elmo. (Thanks Stacie, George and Addie for sending this to her. We just receiced it this morning. She loves it!)

Thank you everyone for all the cards and the gifts. Our room here looks so warm and cheery. We find so much comfort in your words and your thoughts.

~The Helmicks

Thursday, October 23, 2008

MY baby is awake!


You guys just have to see this....Ava was not a happy baby most of the day today. They weaned her Dex and she likes that Medicine. I only let them wean that one and it was not a positive thing. So Miss Ava was thrashing around for about 4 hours. She was not comfortable with the tube in. She was awake. They tried to give her more Versed but she wasn't about to go to sleep. My Mom and I played with her to get her mind off of her tube but she wasn't buying it one bit! Finally I decided to get her sister's pictures down and let her hold them. She was really looking them over. She knew that was Lex and Em. It was priceless! Then I got Whitney's card down. (Thank you Whitney!) It is a singing/music card. It plays Old McDonald. She kept opening and closing it. FINALLY we were seeing our daughter. She even smiled but I didn't capture it on film.

Brian snuck out and visited with the girls. They miss us terribly. They miss little things like sleeping in their beds. I just hope this gets over soon.

I am so glad Ava has found a more happy. They gave her back her Dex and sge is much more content. That was a night and day difference. They also did trial runs off the ventilator tonight and she did perfect. She wants to run the show. The doctors will decide tomorrow if it wil be okay to take her off the vent. Surgery wanted her off tomorrow and the docs here in PIU thought possibly Saturday. I guess Miss Ava will make that call. She looks so much better. Although when she starts feeling sick you can see it in her eyes. They become sad and dark.

Brian is back now and he is sleeping. I might have to take part of the night shift since he got NO sleep today. Poor guy.

Enjoy the video!


video

~Terri

Ava's beautiful head.

MIss Ava's beautiful head. Isn't she precious? My baby is such a fighter.

Hello Everyone. Well today has been another steady day. The burn team came and removed her bandages from her arm and her head. I was shocked to find that they had placed staples in her head to keep the dressing in place. So the process of removing them was terribly hard to watch. I made them give her extra pain medicine but she still cried during it. Her arm looks very gross but the doctors said that it looks fantastic. I told them their "fantastic" word was way different then mine. I surprised myself by not losing it when I saw her shaved head. She has the cutest, little, perectly round head!

The plans for tomorrow is to replace her sponge on her stomach drain and to remove one of the drains coming out of her side. The tube size is about the width of my pinky finger. Oh my how that has to be uncomfortable.

Her xrays of this morning look a little bit better than yesterday. It is great that we know that Miss Ava and the good Lord is healing them without operative measures.

They took out an IV in her neck yesterday and then this morning we found that the tape had rubbed and had caused a nickel size blister. Can Ava ever catch a break? OH why do we continually have problems. Can't the nurses look over ever inch of her body? I made them roll her over to look at ever tiny crevice of her body. Her back is very dry. It is peeling so we gave her a royal lotion treatment this morning. It is called Mommy love.

Here is what she still has...breathing tube, her chest tube, a hicman, (they placed this central line during her last surgery) Picc line, artline, (which they are removing today) catheter, (which is also being removed this afternoon) stomach dressing for the opening which consists of the mesh patch and over that is the sponge with the two drains hooked to the vac for suction. Huh, and now I can take a break!

We still have not told the girls about Ava's hair. I just can't bring myself to explain it. I don't know how they will react. I know it wil grow back but it is just something that will take some adjustments.

Thanks again for your wonderful supportive emails. They make our day!

Oh yes I forgot to mention Nayeli was born yesterday. We are waiting to hear an word about her from Liz and Shane. She did let out a cry so that is a great sign! Please continue to pray for her and her battle with CDH.

~Terri

Wednesday, October 22, 2008

So sad to see her cry.






Ava is resting right now and her heart rate has slowed. It has been in the 150-180's all day. She did have a fever but that is gone no. She is warm blooded like her Dad. She can't have the covers on or else the fever returns. She is such a champ.

Her xrays this morning showed that her left and right lung has cleared up quite a bit but her right lung is still partialy collapsed on the bottom. She has been coughing so much. I can see it hurts so bad to cough but she does it anyway. That is huge in getting her lungs clear and to get her moving in the right direction to get her off the ventilator! I don't want them weaning her too fast. I know Ava and she doesn't like fast change. She gets that from Me!

She did start to cry today and I felt so bad for her. If you don't have much experience with crying and the vents then you probably are not aware that no sound comes out just facial expressions. That must be so frustrating to not even be able to cry. It made me feel again so terrible hurt for her. Then Brian woke up for the day and went to use the bathroom and she started crying again. She wanted her Daddy. Oh how this is so difficult. I can't reason with a two year old that it will be okay pretty soon.

I decided to get away for a few hours today. I went to get my eyebrows waxed at the mall. Hip, hip hoorah! Yea that was my outing. I then went to Target to get Ava a new Halloween Barney movie. She is going to love it!

So all in all today has gone fine. Her tummy looks better to me with this sponge on top with the vacuum suction. It actually look s a tiny bit less swollen although the measurement comes out the same size as the other one.

So on we go to the recovery process. Ava will need another surgery in a few month but for now she will live with her tummy opened so that her intestines can heal. They know she has a leak in her bowels but they are going to fix it later. We have a long way to go and we are thanking God for our "One day at a time!"

~The Helmicks

Taking it One day at a Time.

I am trying to get over the fact that her hair is gone. That was a large hurdle to climb yesterday. The "straw that broke the camels back" so to speak. I talked calmly and rationally to the one of the burn doctors. They led me to believe they would only shave a small portion of her hair, Nothing was ever mentioned about her being bald. I broke down and told him all I have left to do for her right now is to paint her fingernails, her toenails and to fix her hair. Now you have taken that away from me as well. I told him to forgive me if I was mad for quite some time at them and not to expect me to be anything but sad. His reasoning was that her hair could cause infection if it got anywhere near the site. She told us we could pull it back in a pony tail. I am still really angry. The things I'm trying to thank God for is allowing her surgery to take place in the morning yesterday and that they could do both surgeries one after the other. I guess this is just another physical reminder that her arm got burnt unnecessarily. This was not supposed to happen.

Ava didn't do so well tolerating the pain yesterday and I had to keep pushing more medicines. I want her to rest really well for at least 2 days. She needs to feel no pain. Last night Brian said she did well and slept the entie night with the exception of waking to cough and be suctioned. Next the process will begin to try to take her off the ventilator but the only thing we are focusing on at this second is to get her through today. Tomorrow will start brand new. We are taking it slow because Ava runs the show not the docs!

I am really trying to be patient with God. I feel that He is here. I just don't understand all of this. Yesterday I felt I was going to lose all sense of reasoning. My brain just shut down. My Mom came up because she heard about them taking Ava's hair. I was so glad she came.

"Mom you always know just what to say to make thing better. I know that we think a like most of the time and it felt good to know that I wasn't alone in questioning what the Heck was God trying to do to Ava? I thank you for helping me see that we are all just human and we deal with things are own way. It IS okay to be mad and very angry. If not God wouldn't have gave us feelings. Anyway I wanted you to know Mom that I love you so much."

I love getting all your emails and messages. It really makes me feel as though you are all right here praying and asking God to heal our little princess.

I'm sorry I couldn't post pictures yesterday. My heart was just too broken.

Here is her beautiful locks. I know it will grow back. It just hurts us. We are not sure how we are going to tell Lexis and Emeline. In time we will feel better.
I just took this picture about a half and hour ago. She wiggles a little bit but we think she is comfortable.
Wow I just can't seem to be okay with her hair gone.
"My precious Ava, I am so sorry you have to go through all of this my dear child."
This is them bringing her back to her room after surgery. See how many people it takes for one little Princess?
This is the last picture I took of her beautiful precious hair.

~Terri