"Lots of Progress!"

Hey All! Ava has been doing so good on adjusting to tube feeds. I am just surprised at how fast this is taking off. The goal was to get up to 550ml's peer 24 hours. Ava is up to 449ml's in a 24 hour period, give or take. I just got done figuring her numbers for the last 2 days. I'm very shocked. She has so much energy. So we have been doing 30-34 ml's during the day (with about 4 hours totally off everything) and we are up to 17 ml's at night. She can't tolerate a high setting at night.

So I'm thinking it won't be too long before we can get rid of the central line. We are on 12 hours of TPN. So yes she is getting plenty of calories. We have an appointment with the Dr. Shilyansky on Tuesday, but I think if she is doing well I will call and cancel. The only thing they will want to do is talk about her feeds and change her TPN hours. I am very cautious to when we remove the line because I want her tummy to be doing all the work. So to me to even keep the line for a week an only flush it and give her line Heperin would be a good way to go just to "be sure" we all good. I have a feeling she is going to do just fine.

We never had a problem with her getting into things when she wan't feeling good. Now she is all over the place and getting into trouble. The other day she got into my Curio cabinet. (It has a big glass window.) I told her she couldn't get into it and she looked me in the eyes and opened it as wide as she could. I slapped her hand but not that hard just to get her attention. Her eyes whelled up with tears. She looked at me like< "Mom you hurt me." I never had trouble disiplining the other two....her it is different. She's been through so much hurt in her little life that....it's harder for me to be mean to her and "lay down the law."

She seems to feel sick in the morning at at night. This morning she threw up two times. The total volume was a little over an ounce both combined. We are pretty lucky.

Oh, oh, oh....yesterday she had a "formed" stool. I was so happy. Okay you all you might think I'm a bit looney but really this is the first normal stool I've seen out of her in about 5 months. So I was very thrilled. You should have seen THAT happy poop dance! (No I didn't take a picture of it for you. Surprised?)

I want to thank Nicole of Burlington for Ava's Valentine day gifts. You are so thoughtful. Also to the ladies at Harmony Bible church for the beautiful get well card. That was so nice of you to think of her. And I want to thank my friend Fer for editing Ava's "Sunshine" picture I took of her last week. I love the black and white edition. So precious! You can see them to the right of the screen.

As always here is a few pictures.

"Is Po sick, Ava?"


This is how Ava feel asleep a few nights ago. She was watching BArney and all of a sudden....out like a light!


"Mommy I'm THIS big!"


My silly girl.


Naptime today. "Ava how did you get this way?"


I loved this smile. I took this at about 8pm tonight.


In this picture you can see the bruise on her cheek where she feel playing with Emeline in the play room. She cried and cried. Oh and she has finally learned how to run. The bad news is she is falling a lot. Poor girl. She lands on her face most of the time. I guess it was something we all had to learn.


Thanks for stopping by and checking in on Ava. She is doing far better than I could have ever expected. Pray that she will continue to get better and better. Also that the throwing up will stop. I seem to think it is habit that when something doesn't feel right it must come back up. She has a really good gag refux which isn't helping our situtation now. God bless you all!

~Terri

Hello All!

"How cute is this little girl?"


So here we go again....We have been busy the last few days... All good of course. Ava is done with the bug she had and is doing really well. I even hated to type that for fear she might pull something on me! Lexis and Emeline are all done with their colds and the best news of all is Ava never got their cold. AWESOME right? I just am shocked, really. Poor girls I made them wear masks and I think that actually really, really helped. Emeline is almost finished with her antibiotic and I think finally her strep is gone. I will have to take her back and do a Strep test on her next week to be sure she isn't a "carrier" of the Strep. Huh it would figure if she was!!

As I said we have been busy. We decided after "black" fingernail polish was spilled on our creme couch it was time FINALLY (13 years) to get new furniture. I picked out what I wanted and boom it was done. My wonderful uncle Gary and Bob helped us get it home. ("Thanks a million guys!") It looks so good with my wood work. I was debating but decided to go ahead with the "brick" color. It goes really well. It is so nice to have something new and comfy! We can all sit in the living room now and still have room!

Ava has been healing and looking great. I have been slowly upping her g-tube feeds. She is up to 20ml's an hour for 8-10 hours during the day and then at night I turn her down to 12 ml's and hour. Her tummy doesn't want to work as hard at night but to me that makes perfect sense. I wouldn't want to eat at night. Then again I don't have a central line either. As I said before the goal is to try to get her g-tube feeds up to 500ml's per 24 hours and discontinue the central line. Right now she is getting about 280-300 ml's per 24 hours. So we still have some work to do. Of course our ultimate goal is to get her feeds at a higher quantity so that she gets fed 3 times a day or all at night. (Not thinking night feeds are going to happen. However I've learned NEVER to say never!) AND I have been mixing her Elecare to 22 calories instead of the 20 that I was doing. She has been picking at food. She loves Pringles and pasta. I think she ate about 3 pasta's today and one Pringle. She does drink water through out the day which is good as well. I still think she is really scared of things coming back up. She still throws up at least once a day (except, none at all yesterday) but the volume is very small usually about half an ounce! I'm just happy the green bile is gone!

Here are some pictures of the last few days. I always say, NO news is good news so please don't worry if you don't see an update. If something comes up I will let you all know. If all is going good I don't feel the need to post updates. I'm just so thankful I can write this!

I just put this up on her wall over her bed, a few days ago. We received this from Dave and Heidi when Ava was in the PICU. I was going to wait until Ava had her "own" room again but then thought that could be months and months (maybe years) so I went ahead and put it up. Standing back for the first time and looking at it.....tears came to my eyes. How true it is...."Such a BIG Miracle in such a little girl." (Thanks so much Dave and Heidi. It is perfect. I'm just sad I didn't put it up sooner. It is such a reminder of God's constant love for me and my family!)


Ava enjoying the new chair!


Okay Emme made this chair for Ava. It is one of my laundry baskets and a bean bag! Whatever works I suppose!


Po has to go everywhere with Ava.


I wanted to thank Lisa, our home health care nurse, for bringing Ava a new g-tube bag. It is very small and it fits her very well. It was given to her by a friend whose daughter also has a g-tube. Lisa tell her "Thank you and that we LOVE it."


"See my new backpack everyone? It snaps in the front so I can't escape! Mommy REALLY likes it!"


This was this morning. Ava was watching...you guessed it, "The Wiggles!"


I don't know about all of you but in our house, Guitar Hero World Tour ROCKS! Here is some fun moments here at the Helmick house tonight!


Here is Lexis on the vocals and Emeline on the guitar!


Ava the drum set is NOT your sister's head!


Well thanks for all the prayers. Ava is doing all the right things. I can't imagine being so little and dealing with all that she goes through. She never complains or gets tired of all this medical stuff. It has sadly just become part of our normal. My Mother asked me the other day if I was getting tired of all of it. I told her it is just like changing a diaper or giving her a bath. It's just "what we do!" God is helping see so many positives in my life that I wouldn't otherwise have seen. I've met wonderful people. I've witnessed first hand God's love and mercy. We have been through so much and still have more to go but I am so grateful that Ava is still here in my arms. AND I'm happy to be home with all of my girls and the love of my life! Who can ask for more? It all boils down to your family and their health. Nothing else matters! God bless you all!

~Terri

"Sunshine!"

"My Sunshine Girl!"




Hello! Ava is doing much better today. She slept all night with the exception of waking once but then going right back to sleep. "YEAH for Ava!" She is not throwing up the volume like yesterday. She is still getting the Pedialtye through her tube. I have not started the Elecare just quite yet. I want to be sure she is ready. If all goes well I will start it again over night. The key is to let her tummy have a break without it getting used to nothing in it. That is why the extra Pedialyte is so important. She is full of spunk as ever! She just brought me the book, "Five Little Monkey's" I just finished reading it. She shakes her finger when I get to the part, "No more monkeys jumping on the bed." (Of course she has to pick a book that has a doctor in it!

I have been itching to get some more photographs of her but have been waiting until she feels better. TODAY was the day! Sunshine was beeming through the skylight this afternoon so I just HAD to do it! Here is some of my favorites.









Thanks for the love, support and prayers. Keep them coming they are working to her our little Lady!

~Terri

A Mother's Heart.

"3D anyone?"


Welcome back! I have met so many wonderful, loving, caring Mother's over the Internet. I have formed friendships that are close like sisters. I am so happy to share my feelings with them and they just know from experience exactly what I mean with no questions. Anyway to all of you. I want to say thank you tonight. I see your undying love and faithfulness to your children and sometimes the tears fall for I know your fear, your pain and your frustrations. I live them too. You strive to give your children the best of you and all that the world has to offer them. What wonderful role "Mother's" I have in all of my friends!

So I've had about 5 people "just today" as me how "I" am doing. Well I'm trying to hold my head above water sometimes. Almost 99% of the time I feel a strong sense of fighting this beast but then that 1% sneaks up and sits on my shoulder and nags me to death with the what are next things. It's hard not to think about what "may" come. I do know that God has the ultimate say and I can only BEG for his mercy in Ava's tough times. He holds the future as He does with all of our lives. None of us know whether tomorrow will ever come for us. Please try and live just ONE day as it is your last. You will see things that "seem" important will become invisible.

So with that all said Ava yet again gives me a scare.....and to think all this was past us...okay who just typed that? Not me! She woke at 11pm last night to gagging and trying to throw up. Poor baby. I gave her Tylenol and that helped her for a few hours then she once again got sick. This time she did get this up so I decided to stop her g-tube feeds. She was whinny all night long. She insisted we keep Teletubbies on all night. "Oh dear me, Oh my!" I can't sleep with the TV on so guess who was up? ME! She was up for good at 5:30 so I decided to follow Heidi's advice (one of my Internet friends I spoke of in the first part of my post.) and rig up a make shift g-tube drain. I did it and it worked great. So for about 3 hours we were draining instead of adding feeds. (One small step back.) Then I worried that maybe this was more so I took her and Emeline in to see our local doctor. Dr. Jackson is amazing. I really don't know where I would go without her! So Ava tested negative for Strep and she has NO ear infection. Oh I forgot to mention she gave me NO happy poop dances all day yesterday. So I was really getting nervous this might be surgery problems....possible do I dare say the word.....obstruction?...shhhhh! So we went home with another antibiotic for Emeline and no real thing why Ava was sick other than the fact that she might have caught a bug.

I have her on 10 ml's an hour of Pedialyte through her g-tube. She hasn't thrown up since about 5 pm. Pray fro a good night for us both.

She acted fine today with the exception of three more times of throwing up. Her total output was 225 ml's. Not good I know but we have seen worse. I'm really hoping tonight is much better. She is sleeping well this very second...you ask why am I here typing. Well for all of you of course. I do admit this helps me and the docs too. If I forget what day something happens on I just pop on here and voila here it is! Nice huh?

Good news she finally pooped three times today. You can imagine the happy poopy day I did AND Ava! We hold one hand in the air and shout. "Yeah poopy! We looooove Poopy!" If you've ever been through a bowel problem you know exactly how this dance goes. Also I will admit I need prayers too. This journey has been tough on us all. I always have to be one step of the WHOLE game. And quite frankly I don't want to play anymore but as you might see I have no choice. Brian he does good with it all. He goes to work and takes wonderful care of us. I am honored to have such a fabulous husband. He is my rock. The girls they are good as long as we are all home. They love Ava more than themselves I believe. So keep us all in your prayers. I asked God today to send me another 2 weeks of "low" stress medical care for Ava.

As always here are a few of my favorite pictures of the day.

Ava loves to be read to...Emeline does great with her.




Ava and Po. Believe it or not Brian bought Po before we even had kids. Right when we first got married almost 14 years ago. I still don't know why he just came home one day and had him in his arms. I said, "Okay?" But I'm glad we have him now! See God does know what He is doing even when we are so puzzled.


Po HAS to come too!


"YES all my girls are Miracles. Just to see one so up close is almost like you are watching life and death fight one on one. THAT my friends is the Miracle."


Thanks for taking the time out of your busy life to check on Ava.

~Terri

Repaired central line.

We were loners today but we didn't mind!


Hello Ava fans! Ava did well at the doctor's office today. Dr. Shilyansky said Ava looked really good. I told him I was amazed at how well her tummy was looking. I had never imagined it to look as good as it does! He was happy with her weight gain. She is up to 26 pounds! We are going to cut her Erythromycin this week to see if that helps with her nausea. We started it because this antibodic when given in small doeses helps to move the stomach along a bit faster. remember Ava's stomach has trouble emptying. It is very slow. But this may be why she is throwing up once to twice a day. It seems to happen after I give her a dose. One can draw conclusions!

I had a cute little outfit on her but she threw up on it after about 10 minutes after we got there!


Ava waiting patiently...better than Mommy. It took about 20 minutes for them to find us a room. Next time Mommy just might turn around and leave. We can't waitin the hall forever!


I had noticed a tear in her central line yesterday morning when I did her dressing change. I was very afraid it would leak soon if we didn't get it looked at. So one of their specialists came in this morning and looked at it. He said he has NEVER done a repair when the line wasn't broken or leaking. I said, "You haven't met Ava have you?" (Okay I thought that to myself!) He saw it through her Tegaderm and thought it didn't look bad enough for a repair. I immediately told them I wanted them to see it closer without the tape on it. After seeing the line he said, "Yes, it does need to be repaired." So there you have it! We parents must speak our minds and hearts. There was no sense waiting until the middle of the night going to the ER and then not trusting the doctor that has to do the repair in our town. (Plus all the germs in the ER....ya...ya...ya!)

One MAD little girl during the repair. Not happy at all. When she gets upset her face gets very bloochey. I felt bad for her although I really don't think there was pain involved. I do get so tired of everyone saying to her, "Sweetheart this doesn't hurt." No it doesn't but that doesn't make all this aweful stuff go away. She knows that hospitals and doctors mean PAIN! No amount of talking is going to help this 2 yesr old!


The line is a lot longer now with the repair.


This is the diagram of the repair process. They clamp the line by her skin but not on her skin. Then they cut the line by where the tear is located. Next they put the repair line into Ava's existing line. Then they put a brace or plastic piece over the two and glue inside the plastic tube. That's it! It was much simplier than I imagined. BUT the line is very long now and that created a problem when I tape it al down. I'll just say she has an added curl in her line now! Who doesn't need an extra curl?


This what her line looks like now. (See the curly Sue!) Except it isn't red anymore.


I also made Ava's Awareness cards last night that I gave to Ava's doctor and nurses. They turned out soooo good!



All in all it was a good appointment! We have cut her TPN down to 12 hours a day and we are upping slowly her g-tube feeds! Our goal is to get her off TPN but I know it will take a while.

I HAD to share this last one. Emeline is playing Guitar Hero and Ava is enjoying her sister! ;) See her pulling her hair? Yes that is AVA! Oh by the way Emeline is still complaining of a sore throat so tomorrow she will go back to the doctor. I don't think the Strep is gone! Now Lex she is doing much better!


Thanks again for the prayers.

~Terri

Doctor's visit tomorrow.

Hello! So Ava will go to the Doctor tomorrow. I was trying to avoid this first check-up since she was doing so well BUT....you ALL know Ava. She loves to keep me on my toes. Last night as soon as I hit the "publish post" key on the blog she started grabbing at her tummy and crying a little bit. The feeling came and went for about two hours. I was scared and my first thought was, "The surgery, what went wrong?" Then I told myself not to panic that it may just be cramps as her stomach and her intestines have been "out of shape" for quite some time! Then I am almost out of her formula so they will have to get me a bit more until I can get some. As if that isn't enough I was changing her central line this morning and noticed her line was starting to get a tear in it. This is BAD news. Yes they can fix it. You know me I don't like to wait until there is and Emergency room visit. God forbid we have to go into a germ infested place when we don't really need to, right? One last thing she may have a yeast infection. Yea her bottom area was really red last night and today and it was no diaper rash. Okay so a few setbacks but I feel confident that all will go well at this appointment.

Oh yes I will be going all on my own to take Ava to the doctor. My Mother has to work and Brian....well his thing is he is getting the flu....that's what I think. So Daddy has been wearing a mask around the house too! The girls are slowly but surely getting better. I have been hollering at them all day to get their masks on when they are close to her but seems they have become deaf. I just know she is going to get this cold it is only a matter of time. ("PLEASE Lord spare her this cold!")

Good news she is still pooping. Yesterday she only went a tiny little bit and all day we were saying the "God help her go poopy prayers." She decided at that point and time that she didn't need diapers and this is what we got.....

"YES this is MY daughter and YES that is diarrhea. The moral of the story be careful what you pray for because you just might get IT!"


Thanks for your prayers. Miss Ava is quite the gal, as are her two sisters that have been unusually good today, besides not wearing their masks!

~Terri

I'm wondering.....

Hello to you all. Ava is still doing so well. I hope you all had a fabulous Valentine's Day. We just chilled out most of the day. She has not thrown up once yet today! (I shouldn't have just said that out loud.) At 6 am her feeding pump was alarming so I jumped up and realized it was out of formula. I was about to mix more up when I thought to myself...."Let's see if her morning nausea goes away if I stop feeds now." I think it worked. I am running out of formula so we have been letting her be off the pump for longer periods. I have to call the doctor about her g-tube feeds because the Elecare is prescription and we are still waiting to see if we get approved for assistance for that in the meantime we need more. I have been getting into my last breast milk stash. YES I still have it. I gave her 2 boluses of 10ml's today and she did well with it. She is normally hooked up to the pump that runs over an hour at a time. So far so good.

OKAY I was wondering....where in the world she got the bald spot on the back of her head. This is such a mystery to us. Emeline and her collided on Friday night and then I noticed it. I lifted her hair to see the bump and then was shocked that there was NO hair there. It is about the size of a quarter. I have been wracking my brain trying to think of all possible causes and just can't come up with any. I went back through all my pictures since she got her head shaved for the skin graph and none of the pictures show this bald spot. We are hoping it is nothing and that hair will grow back soon. This is just so strange.



This is one of our every other day things but thought you might like to see it. I did her Hicmann line change. It is a "small procedure" in itself.


Here is the table all set to change her central line. I sterilize it first and then all of this stuff is in sterile packaging. I remove it with gloves then I take off her old dressing, once that is removed I take off those gloves and put on sterile gloves, all while wearing a mask! It takes us about 5-7 minutes. Ava is so used to this that she often falls asleep. I continued to change her dressings, while we were at the hospital the last time. I trusted only myself to keep her line clean. I KNOW what it all entails which now scares the daylights out of me.


All changed!


Proof that we just got done eating supper....it's still on her face! Oh well had to share our Valentine's Day cake!


Her tummy looks better and better with each passing day! I clean her g-tube twice a day with a q tip and water than I put antibiotic cream on it or Desitin. So far it looks great! She is still very tender around it but is getting better with me messing with it for feeds and medicines. OH! OH! OH! Do you know how wonderful and EASY it is now to give her yucky medicines or any medicines? Down the tube it goes no gagging or gross faces. (Just had to get that out right now!) So if you have a terrible medicine taker you might just want to ask your doctor at the next checkup to install one of these puppies! I hear they work on adults as well! ;) ~Just kidding you all!~


Wow this update got long. I didn't really have much to say when I got on here! Okay as usual thanks a million for the prayers. She still needs those healing get well prayers. Love and Blessing to you all!

~Terri