Holding our breath of hope.

We met with a new GI doctor today in Iowa City.

As soon as we got into the hospital parking garage she became suspicious. Her eyes got sad. My Mom and I tried to tell her that “this” was only and appointment and that we would be able to go home right after we were done. She was not buying it. She started worrying, I could see it in her eyes. Poor baby she just knows TOO much, doesn’t she?

Dr Ebach is very nice and so easily approachable. I instantly felt at ease and able to discuss Ava’s problems. Our nurse practitioner really helped fill her in on Ava’s past medical history. (Thanks Josh….God knows there are a TON of it!) She started off by asking  me what I wanted from a GI doctor. I said my goal was to get on the same page and to get my daughter better. I sometimes feel I am out in left field. Her last hospital stay…I felt I wasn’t kept in the know…..or perhaps I didn’t want to even remotely think her problems were related to an obstruction, so I wasn’t listening. She showed me the x rays from Saturday night when she had been admitted. It actually took my breath away. WOW she was FULL of air. Dr. Ebach said that by the x ray she would have thought it to be a total obstruction. They called it a “partial” I suppose because she had still had a bowel movement that day. She had NO air in her large intestines. Pointing again to total. I usually view the x rays but the last few times I have not asked to see them. I guess I was just scared.

So here is what is really going on with Ava. Last week Ava was pretty much totally obstructed. That is why she was again throwing up the “poop” green bile. However when they decompressed her intestines. (Hooked her g tube to drain) She felt better and was less distended. Then a few days later they started the Flagyl. This is an antibiotic that does not get absorbed into the body but just attacks the bad bugs. It also has a medicine in it to help with the inflamation.

In simple terms, think of Ava’s bowels like a balloon. When the intestines become big /full of air it is most like to kink or close off, especially if it has a scar tissue in the center.  BUT if some of the air is released it stays more of a constant shape on both sides helping it to stay open and function normally.

Because there IS a thin spot in her small intestines, things start slowing down. Things get backed up and these “bad bugs” start multiplying rapidly, causing her to be full of air then the bacterial starts to spread and produce more bad “bugs”. It makes horrid gas and cramps, that cause her a lot of pain. IF we can control this “cycle” with antibiotics (Flagyl and Gentomycin) combinations perhaps she will not get so full of the bad bacteria and so full of air. We must try to stop this obstruction from happening WITHOUT surgery. The more times they go into to “fix” something the more scar tissue she gets…..making it that much more likely that more scar tissue grows over causing a ………BOWEL OBSTRUCTION. See the cycle?

Since learning this angle of things I feel more frustrated with this “whole” thing. Right now I HAVE to hold onto the facts.

1. Ava is feeling better.

2. She is eating GREAT.

3. She is having regular bowel movements.

4. She is FULL of energy.

5. She is not throwing up anymore!!!!

6. The medicines ARE working.

We took another x ray today to see if she looked any better on the inside. She still has air in her small bowels but less noticeable then a few Saturdays before. Her insides will never be normal and that is SO hard for me to accept.

So although surgery may be an answer it is NOT thee answer. Why I named this post, “Holding our breath of hope” ? Over the last 2 and a half years I have been giving hope to other congenital diaphragmatic hernia parents. I tell them to hold onto all the hope they can muster in their hearts. DON’T EVER GIVE UP HOPE! I feel that I need to live MY words. I need to take a HUGE deep breath of hope.  God is already helping Ava’s body in ways I can’t see. I just wish I could fix this….make it all better. All I can do is have the faith and knowledge that God WILL help Ava overcome these medical obstacles. I have asked him and now it is time for us to just believe it will happen completely. “Ask and ye shall receive.”

She is such a good little girl. She waits so patiently….watching Wiggles and Little People!

Dr. Ebach doing her first exam on Ava.

Mommy and Ava snuggling! Ava is still a bit worried she will have to stay at the hospital.

I asked Ava’s speech teacher about sign language since her talking has taken a back seat to all her medical issues. (I thought if we taught her to sign she would never want to talk.) However I am getting worried she may have a speech problem. So we will be teaching her to sign small things. She really needs to start communicating with us. Yes we understand her but it is frustrating to figure it out.

She has been throwing fits…..tantrums. I am NOT used to this at all. She will cry and scream. Her face turns bright red. Lexis and Emeline never did this to me. I know she gets frustrated and I just think signing will help her feel better too. I also have to remember she IS 2! AND two year olds want things, when they want them! IN this way she is normal.

Thanks for reading and looking at the pictures. Please pray Ava’s intestines continue to see improvement with the antibiotics, so that we can avoid another surgery. As always I will keep a close eye on her and keep you updated.

“In ALL things give thanks.”

~Terri

Flowers as beautiful as Ava.

“Smelling God’s beauty….true innocence.”

Good afternoon everyone! Well Ava is just doing pretty good. I decided that the dafadilles and the tulips may not wait for the rain to subside and I wanted pictures of this beautiful flowers with my miracle daughter. They holler, “Spring is finally here!” It is a tiny chilly today so we both wore jackets. I have been discovering new things on my camera. I knew I had “color accents” but was not able to find the time to figure it out. My wonderful cousin Mindi showed me how! (Thanks Min!) Now I am hooked. I usually always name my pictures.

“Bending to smell the beautiful tulips.”

“Who made you the miracle you are, Ava?”

This picture reminds me of the olden days. Why I’m not sure…maybe her expressing. Look at that face! I love what I see when looking through the lense . That is why I love photography, you just never know what you will capture.

Photography is art. And the art is in the “eye of the beholder”. So for you out there that like normal pictures here are a few as well.

“Happy smiles to warm your heart.”

“Looking at the pretty flowers.”

“Saying goodbye.”

I am in awe of Ava’s quick turn around. She is eating like yesterday. I scheduled an appointment with a new GI Doctor in Iowa City on Thursday. I feel like we all need to get on the same page about Ava’s goals and our long term plan.

The last few days I have been fighting with myself about whether to allow the “Mommy” in me to rule over the “Mommy nurse”. The “Mommy nurse” knows Ava needs rest and all the calories I can muster in her…..while the Mommy wants her to eat by mouth and do the best she can without so much tube feeds. Well today we found a happy medium and I feel okay about it. I set her at 30 ml’s per hour (24 calories per ounce of Elecare…. we had to step down a bit for her tummy to adjust.) as long as she doesn’t mind being hooked up. IF she pulls at the tube I take it off for an hour and try again when she does feel okay about putting it back on. I am continuing to let her eat all she wants by mouth. When she is at a low rate she still has the desire to eat.

I know God is helping Ava and he is helping me as well. This journey gets very long and tiresome. I may “appear” as though I am fine but some days I get down, I cry and I become sad at all our daughter goes through. I was listening to the radio the other day and the song, “The Reason” came on by Hoobastank. I cried like a baby listening to the words. This song expresses my feelings at this point in this journey. Here are  some of the words.

I’m not a perfect person. There’s many things I wish I didn’t do. But I continue learning. I never meant to do those things to you. And so I have to say before I go. That I just want you to know.

Chorus- I found a reason to be. To change who I used to be. A reason to start over new.  And the reason is you.

I’m sorry that I hurt you. It’s something I must live with everyday. And all the pain I put you through I wish that I could take it all away. And be the one who catches all your tears. That’s why I need you to hear.

And the Reason is you!

I am her Mother and I feel some sort of responsibility for this terrible birth defect called Congenital Diaphragmatic Hernia. I know any doctor can tell me that it is not my fault but I still feel partly to blame. No I never drank or smoke. I was so protective of my “bump” when I was pregnant. Ask anyone I tried to eat right and I did all the right things. Despite all that, she was given an unfortunate life sentence. Yes she survived at birth and that was the first miracle. BUT it is hard to see her struggle through a sick body…….however God has been so good to us. He shows me daily that she was born to teach her mama a few things…..and many others who follow her incredible journey.

I thank you from the bottom of my heart for coming to our blog and carepage. I never thought in my wildest dreams that we would have thousands of followers. Our blog has gotten over 35,000 hits in just 6 months! If I can help just “one” person realize that “God cares” and “He hears our cries” then I feel it is worth my time and energy.

Your thoughts and prayers are amazing people!

~The Helmick’s

Piggy

Well if I was not seeing Ava with my own two eyes I would never  believe what I am about to tell you…….SHE ATE SO WELL by mouth today. It was as if God was trying to tell me, “See I hear you and I will show you my love.”

She woke and ate 15 bites of MY Frosted flakes. Then pulled me to the fridge and pointed to the carton of eggs. She then ate a whole fried egg! Then she went back to the fridge and wanted some cold chicken. She ate about 5 bites of and dipped it in ranch!! Did I mention she downed 6 ounces of my sugar tea? Next I hooked her up to her g tube feeds. I set it to 15 ml’s per hour. (Not much I know.) Lunch she ate a whole chicken leg minus the bone! ;)  She then drank about 7 ounces of more sugar tea! Supper didn’t stop her as well. Then I upped her g tube feeds to 30 ml’s. Supper she ate about 10 big bites of noodles and drank plenty more tea.  After supper Ava went to Brian and did her sign for ice-cream. (She moves her hands around quickly in front of her chest.) We had none so Daddy went to the store and got Miss Ava her ever-so deserved ice-cream. Now she is sitting in her chair watching Doodle-bops and eating an icee. I am so proud of her. I would never have ever imagined that 2 days ago when I was so close to taking her to the ER that she would be this good today.

I’m sorry I didn’t update yesterday. She was better but I thought I may jinx it IF I posted she was doing fine. I truly believe her body needed more antibiotics. I also started her on Probiotics. This helps put good “bugs” back in your body since antibiotics take some good out. (Thanks to all my Mommy friends that helped with my decision for the Probiotics! I SO appreciate ALL your imput.)

These are pics from a few days ago.

They are feeding the fish. We have a small pond. We love our fish!

Ava’s big tummy. This picture was taken on Friday night. I was so worried. It measured 53cm’s when laying down.

Gas is SO much better. Her tummy still rumbles like thunder but it is getting quieter. She wasn’t  pukey at all today!!!

Thanks for your prayers. I have met some awesome people on line and am so blessed to have so many care and hold my daughter and our family so close to your hearts!

~Terri

Attention CDH parents.

Hello! I have been asked to help spread a CDH survey around the Congenital Diaphragmatic Hernia community. This is very important. As you all know I have a passion for CDH related projects. So when I heard about this survey I was happy to share it with you all. If you would, please add it to your blog or carepage so that they can get a huge response.

Here is the survey web address......

http://www.zoomerang.com/Survey/?p=WEB2294UN58QEU

I thank you in advance.

~Terri

Gas, gas go away!

Ava is having such a hard time with all of this gas. We are done with the Flagyl until next week. I decided to rest her tummy today and no formula. She ate mac and cheese on her own today along with a few noodles. I also gave her yogurt in her g-tube. Her tummy was quite large last night….53 cm’s.  I got all of the extra air out with a syringe . She felt better. I also started simethicone drops for her tummy/gas pain. I'm not sure they work but I can't just do nothing.I had her on Pedialyte most of the day yesterday as her tummy was puky but she onlt threw up about 65 ml’s. Most of the night I set her g tube to drain as her stomach rumbled like loud thunder…..then she would get bad cramps. She rolls over to her right side to help alleviate the discomfort.She whines and cries then drifts back to sleep. Then this morning her stomach measured 50 cm’s….that is much better but still higher than normal.

I am so frustrated. What is going on? I understand the bacterial overgrowth theory but why so MUCH gas? This is ridiculous. She looks like a pregnant lady, no kidding. She  never complains unless she knows she is going to get sick and then she puts her head down and gives me those puppy dog eyes. It kills me that we can’t help her. I know we will be back in the hospital as she is now 24 pounds. I just hate to have to go back. For one she knows the hospital means “pain”. Number two the germs…everyone that enters our room could bring something in. No matter how many times I use the wipes on the door, knobs, chairs, bed rail, computer, and every other touchable thing in the room. I fear leaving the room to get ice for fear I will bring something in on my clothes. Oh and Number three it just pain stinks to be away from my family and my house. As I write this my eyes fill with tears. When will this end for my baby?

Then part of our family just doesn’t get how sick Ava truly is. They ignore it as though she is fine.  I panick when anyone enters the house that does not wash their hands. I HATE living life like this but we have NO choice. She must be protected. I thought I would get better after her line was removed. I haven’t.

I want to thank my cousins Mindi and Heidi for getting me out of the house. We went to see a movie and boy did I need to get out! Brian was happy that I got away although he became a wee stressed. She is still alot to handle.

Please pray that this tummy gas leaves. Ava is a trouper. Now if I thought she was in a lot of pain we would already be at the hospital. She is handling it all but I am waiting for it to get worse. Her tummy measures 52 tonight. Her heart rate has been good. I tell God if she needs help now let her heart rate show me as He has done each time before! Pray for Ava.

~Terri

“Dear Lord help me…..”.

I have to show you these precious pictures of Ava. For some reason when I shot the picture she looked up and it looks as though she is saying, “Dear Lord help me get all my marbles in this trunk.” Babies praying oh yea I believe they do!

Ava is still struggling with getting up to her full feeds. She hit 777 ml’s the other day and it looks like she will be a little less today. I keep her at a low rate. The night it is set at 30-35 ml’s per hour and the day I don’t go higher than 45 ml’s. She wants to eat and I do give in and give her crackers. Last night was the first time she threw up since last Saturday. It was because of the Nexium….I know it. The script says to give all 15 ml’s. She got very sick within 2 minutes and it all came back up. I then gave her the Zantac later that night since she obviously didn’t get her PPI. Today I did 5 ml’s over 15 minutes and so far it has stayed down. She is sleeping now and that is when I gave it to her. I figured if her tummy is upset she will probably sleep through it. That is my hope.

She has been gaggy today. We try to steer her away from bringing it up. Then she did throw up today about 35 ml’s. Her tummy is just really sensitive. However she is drinking lots of liquids on her own. I’d say about 6-10 ounces a day…..nothing like when they “starved” her in the hospital. (Disclaimer I say what I say and don’t apologize in case you are wondering!) I do understand their philosophy but I don’t believe God would put the desire for her to eat only to be sick……..

She loves our marble roller. She can spend lots of time rolling every single marble down even one at a time. If you are wondering……Brian’s grandfather made it for his kids when they were little. When his grandparents passed we had replica’s made. They have a story and I love that about old toys. She is finally old enough to understand she can’t put the marbles in her mouth so we got it out. See the concentration in her eyes?

Ava dances around to the Wiggles and she has lots of energy lately. She knows all the moves. When she doesn’t know I will video her and show you all……it is WAY too cute. I smile and thank God for His goodness.

This has got to be a new favorite picture of Ava. She loaded all the marbles in her trike and then got on and took off.

Don’t you wish you were two again? Okay so no but it is an age of exploration! She is doing so-so we are still praying that this is an overgrowth of bacteria and NOT an obstruction. Pray Miss Ava gets better and we climb the hill of wellness! We love and thank you all!

~The Helmick’s

We are Home!

WOW does it feel great to be home. Ava is watching a new Wiggles and she is loving being home. Could I get her to smile? No not at the time my camera was out. The girls are not home yet so we are pretty excited about seeing them.

We stopped by Daddy’s work on the way home. He just had to see her and it is on the way. She was so excited to see him but as soon as he walked away the big Crocodile tears came. It is so sad that she has to be away for her family. This time it was just easier that I stay there by myself. Lexis and Emeline needed their Daddy. In fact the first thing I noticed when I stepped inside the house was a room full of blow up beds. All three had bunked together!

By the way I want to thank Daddy’s work, Wal-mart Warehouse for sending her the bear and the balloons. It cheered up her room!

AGAIN thanks for all the prayers. We are more than thrilled to be at home. Her feeds got started and she is off to a great start. She will continue on Flagyl for another 4 days then be off for a week then back on Flagyl for a week and off then on again until we see her doctor. Hopefully this will ward off those nasty bacterial overgrowth. We still are not certain it isn’t an obstruction but with this regimen we shall see. If it is I know it will rear it’s ugly head again!

Thanks Chelsey, Laura and all the staff at UNI we had a fabulous stay! We are praying we won’t see you again ever….no offense!

Smile ;) life is great!

~Terri

Waiting to be discharge!

Ava had a fabulous night. She slept next to me like a rock. I woke at about 3:30 am. I looked over at her and tears began to fall from my eyes. How lucky am I? I thanked God for allowing me the go on this journey with her. Some parents go through life taking their children for granted. I know how important it is to find the best out of life. I am just amazed at how quickly her body healed.

I woke quite early and started packing. When Josh, our nurse practitioner, came in this morning he knew my plans. He agreed she was ready. They want me to keep her on the liquid diet until this weekend. That is easy. We are having trouble finding a pharmacy that carries her liquid  Protonix. I really think her body does good with this PPI. She was on this as an IV medicine for about 6 months. We tried to switch to Omplosole but she didn’t do well with that one. We are now checking into Nexium. That too is a PPI and the strange thing is that is what I take!

Her stomach is down to 47 cm’s today. You can also see her pectus in this picture. This is also from her birth defect. Hopefully we will not have to do anything with this down the road

So we are now just waiting for the word and then we will be out of here. I am so happy. Ava is in a really great mood today. I want to thank my sister Rachel and her friend Garrett for coming up three times while I’ve been stuck here. They have gotten me food and anything else we need. They came this morning so that I could get my parking pass validated. I just can never leave Ava. Here she is see where her hand is?

 

Last picture.

~Terri

Better day but SO loooooong.

Ava did much better today. We are thinking that the antibiotics are doing the trick. My Mom called today and reminded me of the verse in the Bible that goes like this, “You have not because you ask not."  We just have to ask God to heal her without surgery. “Ask and ye shall receive.” right?

Her stomach is back down.....not totally but pretty close. She is up to 40 ml's per hour on Elecare and she has been so hungry, still. She is still just on liquids. She LOVES chicken broth! She drinks about 10 ounces every 8 hours. That is the most she has ever taken in by herself. I just can't believe she hasn't thrown up since Saturday. WONDERFUL!

She also pooped 2 times today with large amounts both times. So I’m thinking she doesn’t have an obstruction. We shall see.

We did lots of fun things today. I thought I would show you the best right off at the start. She is back to herself. No pain what so ever today!! She was a pistol.

 

This is Miss Ava waking this morning. Why must the docs come in so early?

Bath time was much better today!

Watching TV in her stroller because what else is there to do but play musical chairs?

NEWS FLASH! We finally got a potty chair. Thanks you Emily and Bree from Child Life! Ava sees what I do and copies……….What can I say, I like things sterile!

AND a girl has to have a foot bath now and again!

At the end of the day Ava hates to sleep in the hospital bed. She resisted until I said, “Now Ava!”

So I saved the best for last. Miss firecracker here is rockin this illness out of her body. If all goes well and no vomiting overnight we have a very good chance of going home tomorrow.  She is doing great and she was in a much better mood today as her tummy started getting the feeds. She was still doing great with her liquids which surprised and shocked me once again. She is always going to be this strong willed child. I must just get used to this right now, because I don’t see it changing anytime soon!

Your prayers are being heard. SO keep them coming. God can heal her without surgery….we just need to ask!

Cross your fingers that we can leave tomorrow.

~Terri

Staying hopeful.

SO I hope everyone is doing great tonight. We are still hangin’ out here at the University of Iowa Hospital. Ava is really getting tired of being here already. We just got done going on a very long stroller ride. I wait until late so that no one is in the halls. She is happy to see other scenery.

This morning they took another x ray of her abdomen. There was no change from the one the other day. Ava was very upset and cried the whole time. She is just very scared and leary of everything that gets put her way. She’s been through too much. They also took blood from her ring finger this morning. I asked if it was necessary since they had just drawn blood the day before. She cried through that as well. It took about 5 minutes to get the amount they needed. Normally they just took blood through her Hickmann line.

She hated her bath this morning. She was worried about getting her line wet and that totally distracted her. Plus she got cold. I was a small tub she is used to the white one and she want comfortable. Poor Ava.

She was super hungry today and was mad at me for not letting her eat. I couldn’t eat by her so it was a sad, sad day. I waited until she napped and then heated up some of my Dad’s chicken rice soup. “Uhhh-Uhhh good!” She found comfort in brushing her teeth for about an hour. Enjoying the tooth paste.

The x ray lady let her pick out “a” sticker she grabbed 2 whole piles. I snickered to myself. She deserves it. We came back to the room and she made this with all 50 Thomas the Train stickers.

This afternoon Emily and Bree from Child Life came in and did a project with Ava. She loves to glue so she had a blast making this beautiful purse! Give Ava glue and watch out!

Her belly is distended today. I didn’t notice it really until today. I measured her on Friday and she was 51 cm’s. I’m not sure what she is today. I need to ask them for a tape measurer.

I was so sad that no one can find a potty chair around here. I find that odd that this is a major/huge hospital well a university and they only have ONE potty chair and it is in use. WHAT? She hates to wear diapers and I don’t want her great skills to be lost because of a hospital stay. I guess next time I will bring my own. I can’t seem to remember everything, especially my own bathroom! ;0(

So back to her being mad at me. She wanted food badly. So finally they decided to put her on a liquid diet. When the food guy came she was really excited. It was short lived when she realized it was just liquids. She did like the chicken broth. I had to feed her with a spoon since it was more like eating then swallowing!

 

See since now she has been on straight drain since we came here on Saturday. So we clamped her tube and let her see what she could handle. She took about 10 ounces of fluid by mouth. She was so hungry. She drank  broth and tea and Italian ice. She was fine for about 20 minutes, then I smelled poop. I checked her diaper (as they still can't find a potty chair) and she had pooped. I asked her to bend forward. When she did she screeched in pain and started crying in pain. I've never seen her like this. I called for the nurse and she thought she was having cramps. Without asking I vented her again. ( Hooking her feeds out a tube to relieve the pressure in her tummy. Don’t we all wish we could do this after a Thanksgiving meal?) See they wanted to see if she could tolerate feeds clamped.

The other surgeon came in and he said they were treating her as though she had a bacterial overgrowth in her intestines and they were hoping that would solve the problem, if not they will do a swallow study in a few days. If she doesn't improve they will have to do surgery. ALL other options exhausted. They will move slow and only do surgery if absolutely necessary. Oh I knew this was the case but I just can't go there in my head. I don't know how many surgeries I can watch her go through. It tares me up each time. I hate this......just hate it. I'll be praying God helps her through this one with no surgery.  On a positive note she is pooping and passing gas. That makes them less suspicious  of an obstruction.

She was very unhappy tonight and I snuck her 4 Cheese Nips crackers. She found them in my bag and she looked so sad. As soon as I seen them come out the tube I drained them out. I don’t want to hinder anything they are doing for her. She is now on Flagyl (antibiotic)this will help if she does have the bacterial overgrowth. I wish we could test to make certain it is this and we are not just guessing.

See her tears? I hate to see my baby cry. This has only happened a few times in her life. I could probably count on one hand how many times I have seen her cry out of frustration.

Her she is with a popsicle. Our nurse Christine got it for her. You should have seen her eyes light up!! The tears disappeared and out came that Ava smile!

Please ask God to fix this with medicine and not with a scalpel. I don’t know how many times I can watch her go through surgery and end up in the PICU. I cried today at the thought of her going through another operation. It just can’t be…so pray this antibiotic is exactly what her body needs to get past this hurdle. Mommy can’t take too much more.

The good thing about this stay is that God has given me a peace and I don’t feel at home somehow. I love sleeping next to Ava…being able to comfort and hold her. She is my precious. Thanks again for your messages of support and love. I need you all just as much as Ava needs me!

~Terri

Air in bowels

The x rays showed Ava has air in her intestines….not great news but we knew it was something to do with her bowel. It could be several things. The most likely is another partial bowel obstruction. The hope is that if we give her fluids it will work its self out on it’s own. She did have a bowel movement this morning so I feel a little bit better about how she is doing. I’m hoping getting her in the hospital at the start will help us in the long run. The other possibilities include infection or bacteria overgrowth in her bowels. This can be treated with antibiotics. So far we don’t have proof of an infection. I was a little worried that maybe last week they we a little premature at stopping her antibiotics for the line infection. It doesn’t explain why she did so well for the five days after, besides she has no fever. I tell you Ava always keeps us guessing. It has made me and expert at looking things up on the web! It is critical that I know all. I get nervous I may miss something. Doctors are human and they get tired and sometimes they don’t see the whole picture like I do. If I can study up and ask question we can come to an agreement on her treatment.

Here was her getting her IV. It only took ONE stick! I was thankful for the preciseness of the nurse. Poor Ava……she didn’t give in. She didn’t even cry….two tears was all there was…… See her eyes pleading with me to help get her out of there? I hate those glaring eyes. What is a Mommy to do?

Her surgeon came in late last night. I was so glad to see him. He wants to watch the blood cultures and keep her g-tube at straight drain to see if we can get this resolved without surgery. I asked to get switched back to Protonix. This is a Proton Pump Inhibitor. See she was on an H2 blocker called Rantidine (A lesson about the two,  both suppress the acid and secretions in the stomach. However PPI’s shut down the proton pumps in the stomach. H2 blockers work by blocking the histine receptors in acid producing cells in the stomach.) PPI’s are supposed to work a little better with (GERD) reflex. Actually she was on both while she had the central line…..double protection. Here is my concern, she throws up so much that the lining of her esophogus is going to be irritated. Sometimes this can cause cancer. (Doesn’t everything?)

She is a happy little girl today. Her stomach naturally doesn’t hurt since everything that goes in comes back out because of the drain. This was taken an hour ago. She is a character! Smiles oh yea!

A few minutes after this picture was taken she wanted out of the bed. Who can blame her?

Our matching bracelets that she points out all the time! (Yes I know my hands are dry. It is from all the washing!!)

Ava is watching not only the TV but the portable dvd player. What does Mommy watch? Whatever Ava likes! See what she thinks of me!

Dr. Shilyansky is hoping with a few days of IV fluids she will pop out of this. Please pray this is what happens. Our little girl has been through so much. It breaks my heart to have to think about more. The good or bad thing depending on how you look at it……the last two times we have come to the University all we do is go to the ER and they tell us head up to your room, they are ready for Ava. How sad is that? All I can do is what Ava did in the picture above…stick out my tongue!

Well everyone have a good day. Say an extra prayer for Brian and the girls. I know he wants to be here but he also has to pay the bills. I have such an amazing husband. God did good at helping me find him! Praying Ava has a super day of healing.

~Terri

Back in the hospital.

So Ava isn’t tolerating her g-tube feeds nor the pedialyte. I get worried since she doesn’t have her central line and I can’t hook her up to extra hydration. Oh dear what are we going to do with her? I get tired of all the hospitals and doctors. It gets old. However I know Ava and I know when she needs help and I would do anything at any time for her.  We just got her into her room and she is sipping water.

Why are we here? The last two nights she has woke many times with a “I’m hurting bad” cry. She has nausea really bad. Today she was very uncomfortable and this afternoon all she wanted to do was lay on the floor next to Daddy.  She has not been wanting to be hooked up to her feeds. She pulls at her tube. I however don’t fall for it. I started her on Pedialyte this morning to see if that would keep her hydrated and out of the hospital. It didn’t work, She only peed once today and it was very dark.  Then she began throwing up poop like substance.  YIKES not again…..she pooped yesterday though. I’m not one to wait too long. We were just here last week!!!

Ava keeps us guessing all the time. They are going to start and IV and do abdominal x rays.  I hope they find something. Her stomach growls extremely  LOUD! SO here we sit again. This time it is just me….my mom is here now but will be going home. Brian has no time off…..so he will be working and I will call him if they figure anything out.

I know that God has Ava in His strong hands and I am not afraid. Please pray for her. I just want this all behind us, sadly it is not. A few more pictures of Ava.

~Terri

Ava’s Song!

Make an on-line slide show at www.OneTrueMedia.com

Please stop by Songs of Love. It is an awesome organization. www.songsoflove.org  Ava’s song was written, produced and sung by Thomas Jones. He did a super job of capturing Ava’s spirit. We are more than thrilled at how it turned out.

Ava got her ears checked here at home by one of the local school centers on Thursday. She passed both very quickly. That is probably the fifth hearing test she has had since birth. All her complications puts her at a great risk for hearing problems. So far so good. I’m worried about her eyes. She sits really close to the TV. This was a tall tail sign with Lexis that she needed glasses. We are hoping Ava just has to get it all in!

Last night and today Ava has been struggling at g-tube feeds. Her tummy ached all night and most of the day. I was barely about to get 400 ml’s in all night and half the day. She pulls at her tube wanting it off NOW. Her tummy growls really, really loud. I’m not sure what that means? So we are praying that tomorrow is better.  I called her dietician today and she encouraged me. Jean if you are reading, “Thank you for being so genuine. I really appreciate all you do for Ava. “ Perhaps this is Ava’s way of letting us all know that she is still in charge. It worries me…..this was the reason I was so hesitant of removing the line. I’m sure she will pick it up.

For those of you that can’t view the video here is a few new pictures from yesterday and today.

I didn’t notice until I viewed the pictures on my laptop that her shirt says, “Dreams Come True!” How true is that?

Thanks for stopping by! I hope you enjoyed the video. We feel pretty blessed to have three beautiful daughters.

~Terri and Brian