Lots of great things!

Hello everyone. Ava had another great night. Her little body is working in over drive to heal itself quickly. I am just amazed at her progress.

So I am just going to throw some information out here, I'm sure you all want to know.

She hung in out 88-92 O2 wise from about 5am - 8:30am. I was wondering what was up.

Since 9am she has been holding steady on her stats. She runs 98-100. She's on 1 liter of oxygen at 40%. They are going to lower this and try to get her off the O2 all together today.

Her stomach measured a little bigger today. Yesterday it was 48.5cm's and now today it is back to 51cm's. We are watching that closely.

Her NG tube got somehow, turned to the off position during the night so the mickey started draining and picking up more. I caught that this morning at it is now fixed.

She needs to cough but I'm sure it hurts, even with the epideral, but she has been doing it when it is very necessary. She also spit out a large mucus plug this morning which made me feel a lot better about her stats.

Her heartrate has been lower than normal. They are telling me it is due to the epideral.

She is on TPN, Epideral, Protonix, Famotidine, Banomyocin, Zocen, and Nystain. They stopped her Lasix yesterday. Her swelling is down and she is still peeing great.

Her temperature has been normal. Her bladder pressures are good as well. Last one was 10 so they have discontinued the checks unless we see that her belly is extended.

Her incision is healing well. The redness and bruising is going away.

Her respitory rate has been 25-32 breaths per minute. Her heart rate between 98-138. Her blood pressure has also been good. Her last one was 100/41.

She is much more alert today. Last night after I got done writing the update I was shocked to go back to her room and see her beautiful blue eyes. She wakes in periods of usually 15 minites- 30 minutes. Then she watches her shows and drifts back to sleep.

She still has the cathedar. It will stay as long as she has the epideral.

All that said her pain is being managed very well. She doesn't seem to be in any discomfort. When I move her up in the bed she does scrunch her face. I have been making sure she gets Tylenol ever 4 hours for throat pain, as I'm sure it is still very sore from the tube.

All in all she is doing far better than I had anticipated. I told the docs on rounds this morning that "It isn't over yet. She always manages to throw a curve ball in on us when we least expect it. Don't anyone tell Ava she is doing good." They laughed.

The girls are doing fine to all that asked about them. We did find out yesterday that they both are getting colds. I wanted them to come up this weekend but now that is not going to be possible. Isn't that odd. They stayed healthy all this time Ava was home and NOW they happen to catch a cold.....Huh was I double right for insisting that Ava get her surgery. Now more than ever I know God put them feelings in my heart. She was ready!

Keep the prayers coming. Love to you all!

~Terri and Brian

She is extubated!

I am happy to report she is now OFF the ventilator and breathing well on her own! The tube came out about an hour ago at 3pm or so. The epideral seems to be working just fine. I was very concerned about whether it was going to kill the pain. It can be left in for up to 5 days! One baby step at a time!

She has only opened her eyes twice. She is very sleepy. If you remember she was this way the last two times she has been extubated so we expected this reaction. We are praying that infection staya away. Her incision looks red in a few areas so we are keeping a close eye on that.

Ava got a Mic key button placed during surgery. This is a tube that sticks out of her stomach so that we can give her food and medicines through it. Plus wecan suction as well. Her NG tube is still in her nose as we are still getting green bile out of it. When it slows down this too will come out.

Please continue to pray! Thanks a million!

BUT again she did very well today. We saw another miracle today our baby is breathing all on her own! God is good!

~Terri

Epideral take 2

Ava did well over night with the exception of one time. You ask....Who is in control here? It is "Ava!" She wasn't interested in being suctioned so she bit down on her breathing tube and started to destate. Laura had to do a few chest compressions to get her to a better place. Oh yes this is MY child!

She is still on the ventilator. We had to take her completely off the Fentanal and Diladid. She has a bad itching reaction to all of these. They were using the Newban (This is an antihistimine.) I thought it was a narcotic but I was mistaken. I'm not sure it worked since they put her back on the Propofal.

So I asked the docs here if she could have another epideral since we were running out of pain management options for her and I was getting afraid for her. No one should feel the pain of an extensive abdominal surgery. So another one was placed this morning at about 10 am. This time it is higher up. I am really praying hard that this is what is going to help her kick the pain to the curb. She should still be able to move her arms and legs. She moves and turns on her own even though she is very sedated. They are lowering her Versed and Dex. Her epideral should take effect at about 2 pm. (They didn't start the epideral meds going until noon.)

So we again wait and see. That itching problem was horrid. Her little face is all scratched up. I can't wait for that tube to be gone. I know she will feel so much better.

My Mother just got her a new Barney Valentine movie and a Wiggles movie. She is going to be so happy! Pray for an easy extubation and an even easier transition to the epideral. Extubation depends on when she "wakes" up from the sedation meds but the plan it today. We shall see.

Thanks again for all your prayers. We most certainly need every single thought, well wish, and prayer.

~Terri

Her way....

Okay "waking" Ava up caused a reaction. She became very itchy with the narcotics. I felt horrible for her. She tore her face all up. Benedryl did nothing to help the itch. She was miserable. I was scared that she was going to hurt herself really bad. I got a wash rag and started helping her itch while the nurse got the doctor. We have very few options. They are goint to try a new narcotic that starts like New....something. It is for people that are alergic to these things. So now she is back on the Propofol to calm her down. When I left the room she was back to sleeping....well if that is what you call it.

They might have to put another epideral back in....we will see how she does tonight. Poor baby it is always something.

The good news she was way over breathing the vent. She is a fighter that is for sure.

Prayers please, please, please!

~Terri

Sleepy Head!

So Ava has been resting really, really a lot today. After they started the Propofol she has not moved. I gave her a bath and nothing. I painted her anils and lotioned her all up so she smells fabulous. We did notice something strange, after a small bowel movement we noticed white poop coming out of her. It was so strange. I'm thinking that it is left over barium from a few months ago. The last several times she did the swallow study tests they used a more liquid, watery substance. BUT the first few times in October they used the real deal barium. Huh do you suppose it got unclogged and bam here it is? Her butt is also very red and irritated so I asked them to culture it to see if she still had strep. I'm hoping it is just sore because of the runny stools.

She has become swollen. Her face is really getting big. They were giving her bolus hydration in attempts to keep her heart rate a little lower last night and I think it finally caught up with her. Her urine output wasn't fabulous but just okay. I asked that they start her on Lasix to iliminate this problem quickly. We don't need extra fluid building on her lungs. They listen and now she is peeing like a champ.

She was just taken of the Propofol about a half an hour ago so we expect her to start moving and waking soon. I already miss her little happy smile and that precious laugh.

Well I'd better get back to the room. Oh just to let you know Brian or I always stay in the room at all times. There is a couch that turns into a bed. He sleeps during the day and I at night. Well that is what we did before so we should fall back into the same pattern. I have an amazing husband. Someone has to always hold her hand!

Thanks for the prayers. The plan is to still extubate tonight IF she wakes up. They've lowered the vent settings and she is breathing way over the vent and her oxygen levels are great.

~Terri

Not so fast.....

Okay so we are waiting a little bit. I was concerned with taking the tube out too soon. They started her on a drug called Propofol. This helps to sedate her as they wean the medicines. She is now off the Versed and they are switching her from Fentanyl to Diladid. She is still on the Dex and antibodic I mentioned last post. They will be starting her on a new antibodic as soon as she is extubated.

She is resting very well now. Brian and I joke and say her heartrate and blood pressure are fake. Her blood pressure was 67/ (I can't remember that number) and her heart rate is 98. Yeah right. This is the side effect to several of these meds. She has not moved on her own since starting the Propofol. She seems fine. I changed her Hicmann line dressing this morning. It was due to be changed yesterday but since Miss Ava had so much going on it had to wait. Then this morning it was driving me crazy so I said, "Girl today is the day!" Her nurse Katie was my assistant. It was kind of nice to get help! We put on her "Wiggles" friends so we will see what happens.

Dr. Volk wants Ava, as I do, to prove herself and breath on her own. They have been lowing her vent settings and she has tolerated it all very well. So we shall see. I'm imagining that it will be more toward early evening, late afternoon before she is extubated. We want her ready, that is for sure!

Also her tummy is measuring 51 cm's. This is to be expected as her intestines were messed with yesterday. I just can't help but think of last time. Things were going well and then the third day things went down hill but as many of you have mentioned it is a "New day." She is much stronger now.

I still have not gotten my laptop but as soon as I do I will post pictures! Thanks again!

~Terri

Prayers for extubation!!!

Okay I am smiling from ear to ear right this second. Dr. Shilyanski just came in and said that she looks great. He is watching a place on her incision as it appears a little red. Other than that he thinks she is doing very well.

The decesion was made to extubate. I am a nervous wreck. They think that since she was so strong yesterday and obviously breathing well before surgery that she no longer needs the breathing machine!! They were worried about swelling and how it would effect her lungs but al xrays look fabulous.

Please please pray things go smoothly. She is really moving and wanting to completely sit up. If we would let her she would roll all the way over on her knees. She hasn't opened her eyes yet this morning. She was adgitated by the pulsox on her thumb so and Brian wasn't helping the matter. He would say, "Well take it off Ava." and she picked and picked at it but since she was sedated pretty good she would fall back to sleep and then go at it again a few minutes later. It was precious to know that she understands all we are saying. Oh yea she also wanted Barney on TV. She is pointing at the screen. How funny huh?

So in about a half an hour we hope to have her off the ventialtor!

~Terri

Incredible Strength!

Good Morning. Miss Ava is such a fighter. The docs and nurses are just astounded byt her strength. She does not want to be sedated. She had a pretty good night. She keeps reaching out to Brian and I as if to say, "Get me out of here Mom and Dad. I grab her hands and start singing her "Wiggles" songs. (Toot toot big red car, Hot Potatoe, Fruit saladand Barney's I love you!) They want her resting very well but the more they go up on her medicines the more she tries to move. What's the saying, "You can't keep a good girl down?" That our Ava!

I called the girls last night but forgot they had church. I left them a message and told them that Ava was doing really well. I miss them already.

She did get a fever (101.7) at about 10:30 last night. Her heartrate also increased to 180. She doesn't want covers on her at all. So we took them off and gave her Tylenol, that helped her a little bit. When she moves she tries to sit up, and she will move her entire bottom where ever she likes. Then at about 1:30 am she had a bowel movement. So now this morning the epideral has to come out, due to possible contamination. THe stool got no where near the epideral but I guess that is procedures. I was devastated. I know, since I've been here in this spot already this is not a good thing at all. I'm almost certain the breathing tube will have to stay in for a few more days and with her wanting to wake up she will have to be dosed pretty high to avoid her doing this. The whole point of the epideral was amother way, besides Narcotics to control pain. They won't extubate (take her off the ventiltor unless she is pretty low on her Narcotics. So I think this is a setback, in some ways. However I know that God knows perfectly well what He is doing. It is just so hard to "know" the next steps docs take because we "just know" the protocal.

I finally went to sleep at about 2am. I woke about 6:30 with a horrible headache. I feel a little better now. Here is her list of medicines: Fentenol-mcg, Versed-60mcg, Dex-1.25mcg. HEr PRN's are Fent-25mcg, Versed-1mcg, Vec-1.2 and Tylenol, Zosyn (antibodic).

Now I had to ask for her stomach to be measured. (You know me Miss keep track of things because I KNOW THINGS!) I was shocked that she was 48.5 cm's. (Remember the other day she was 56 cm's?) So wow was that great. Since last night she has gone up only 1 cm to 49.5 cm's. Let's pray it stays low but a little swelling is expected. We just don't want what we had last time.

Her doctor hasn't come in yet so when there is more I will of course update. Thanks again for your kindness. Love to you all~

~Terri, Brian, Lexis, Emeline, and Ava

Out of Surgery

So Ava got out of surgery about an hour ago. We waited for her the last hour in her room in PICU. (room 15) They brought her in and wow it hit me again that she is very sick. I don't think a mother can ever get used to her child being hooked up to so many wires and tubes.

Her heart rate started climbing so they gave her more pain medicine. Right now she has an epideral. She is also on Fentnyl and Versed. The surgeon said all went very well. They had 4 sections of her bowel that had to be repaired. One spot was very narrow and had to be removed and the intestines had to be sown back together. Her belly was tight so they decided that the ventilator needed to be left in because of possible swelling of her insides, that might cause difficulty breathing. She is already fighting the sedation. Her eyes can open three times and she keeps trying to cough. Her tongue is also moving around a lot. They want her to rest well today and tonight.

I don't have the hospital laptop yet so I can't post pictures. I know I'm sorry. It would break your heart though. She is such a fighter and is giving it all she has got!

Thanks so much for all the wonderful supportive messages. I cry reading them every time. It gives me the extra boost I need to get through this very difficult time.

So right now she is stable.

As with before we ask that we have no visitor. If you would like to send something you can email me directly at mycdhlife@gmail.com. Thanks again.

~Terri

Still waiting.

She is still in surgery but Josh just stepped in to inform us that all was going well. They found a piece of her small bowel that was as narrow as a small finger.....no wonder, huh? All is still going good but Dr. Shilyanski thinks the surgery will be yet another 4 hours. When I saw Josh had a huge smile on his face I felt a little relief. (Plus I took a Zanax a half an hour before. I had to relieve some of this anxiety.)

More good news was that the doctor thought Ava's intestines WERE ready for suregery. Isn't God amazing. Things are falling together. So now we are going to get some lunch and he is going to update us in another two hours.

To think that my baby is lying there open with her intestines laying on top of her is gut rentching but I know this is what has to be done to get her better.

I told Josh that if something would go wrong and she was going to die to PLEASE get ahold of us so that we could say goodbye to her. I know this might sound bizarre but it is something that is running through my head and I have to express.

I'm somewhat relieved that things are going good. Continue to pray that they stay in a good direction. Thanks for all the messages. They make a HUGE difference to us. They help lift our spirits so much. Love to you all!

~Terri

In surgery

Thanks you all for your prayers. We didn't get much sleep last night as you can imagine. Ava slept well actually, only waking once briefly. I suctioned her and then she fell right back into a deep sleep.

Lexis and Emeline were sad but we reassured them that they would see her soon in the hospital. I took pictures of them kissing her. They love her so much.

We got here at 5:30am and was immediately taken back. We always have to make sure she is taken to a private area, away from people. We went over everything again about the surgery and I asked if I could go back with her to surgery since she was very nervous. Her dad was stroller her in the stroller trying to keep her busy, but I think she just knew.

I was asked if I perferred that she get a little anxiety medicine, through her central line, before they even took her back. I agreed quickly. They made me gown up as though I was going to be there for surgery. We were taken back and I was amazed at how small the room appeared. Ava was not afraid any longer. She was just looking around at everything and everyone. There was approximately 10 people in the room, that was another thing I was shocked about. (I specifically told them I wanted no students of any kind. That is my right.) I was informed that they were all needed. I was kept reassuring her that all these people were here to make her better. Then they told me that I should give her a kiss and talk to her. I bent down and kissed her forehead and told her I loved her so much and that I would see her in just a short while. I stayed in the room until they administered the sedation. An over whelming feeling of grief hit me as I left the room. I started to tear up. My baby was in their hands.....but most importantly she was in God's.

So we are now in the waiting room. The surgery is expected to last 5.5 hours. Our wonderful nurse practitioner, Josh Peterson (His wife is overdue and he is in with Ava per my request.)just came back about a half an hour ago to tell us that they just started surgery and that everything was going fine. I asked about her heart rate and her blood pressure. ALL GOOD. So this is where we are....waiting.

Please keep Ava in your constant prayers as she once again fights with this cdh beast.

~Terri

Surgery tomorrow

Hello all. I am so tired. It was such a long day. Ava's backwards swallow test went fine. It showed that there was no obstuction in her large bowel. (colon) So we are happy with those findings. Her surgeon wanted us to wait until February 16th to do the surgery but I explained to him my feelings. I told him about my dream and that I have been feeling that "the time is now." He then told me that he was going to be out of town next week and that made me really nervous. Then after about a half an hour of discussing her behavior last week he said, "How about tomorrow?" I was speechless. We then agreed that it was best for her to be well and that he would definately be doing the surgery. I feel at peace with this although I am scared to death. We have to leave for the hospital in just 7 hours. Here are a few pics of the day.



She pretty much cried this whole test.


Miss Ava weighs 25 pounds.


She was 37 inches tall. I was shoked. She has grown so much the last two months.


My happy girl.


She also had an ultrasound done of her kidneys and bladder. We were just checking as a followup after her almost bout with dialiais when she was in the PICU. We didn't get the results of that test.


Mommy and Ava are exhausted. This was shortly after we got the news that the surgery was a go for tomorrow.


I'm very afraid. Please pray for Ava and all our family as this is so difficult again to surrender our baby to the hands of some one else. Pray for strength. We know she will go to PICU right after her surgery. Surgery is scheduled for 7:15 am. I will try to get ahold of one of the hospital computers and update as soon as I can.

Thanks for your support, love and prayers.

~The Helmick's

Prayers for appointment.

Tomorrow we will be heading very early to her surgery consult. I am going to do all I can to get her surgery within the next two weeks. I just feel my heart tugging at me again just as I felt the strong urge that she had reherniated. I have listened well to my Motherly instinct and I really feel that they have saved her many times during the last 4 months. PLEASE, PLEASE pray that if it is Ava's time for surgery that God will put this same feeling in her surgeons heart as well. I only what to do what is best for Ava, after all she is boss! (And has been since day 1.)

She has been throwing up more again today. This is very hard to see. You would thing after 3 months of this I would become some sort of used to it, well I'm not. My Mother will be going with me so pray we have good driving weather as it is about an hour and a half from our house. It will be a full day. She will be getting a enema test just as the swallow study just in the opposite direction. I hope that makes sense. She will be seeing surgery, GI, and the bladder doc.

One quick last thought....I know you all have your crosses to bear so I am even more grateful that you come here and read up and keep informed of our daughter. I've heard that when some read our updates it puts their lives in prespective. My sister Mary went through a very bad misfortune today and my heart is so sad for her. I won't go into detail but could you all say a prayer for her. "Mary I love you and just know that I care deeply and someday we will know why so many bad things have to happen to us. BUT in the meantime you are healthy and you have your whole life in front of you. Please don't let this bring you down. You are strong and you will get over this hurdle. Love you sister!"

Thanks all for your support!

~Terri

Ava's Cookin'

Good afternoon Ava fans and followers. She has had a good few days. The nausea seems better and she is resting a lot easier at night. (I wish I could say the same thing.) I still get up at least 4 times to check on her, suction her stomach, or change her diaper. Fot those of you that have never had kids on TPN (nutrient from a central line IV.) They tend to wet through their diaper and totally soak all bedding! Lovely huh? I have even put down a waterproof pad and that helps save time but then they too have to be washed the next morning. Well the last 4-5 nights since she has had a high output through her NG (tube that goes from nose to stomach) then she doesn't pee as much. She actually becomes dry and then I have to worry and be concerned if she is getting enough hydration. (That is why we started the bolus hydration this last week.) That in itself has been so much fun! (Sarcastic there.) Ava hates to be hooked up at all. I'm having a harder and harder time with her not caring if she pulls her central line. We have been following her around either carrying the pole or her baby-outside back pack. I really don't blame her for not wanting to be tied down, who would. Also she is getting her appetite back. She has been dappling in eating tiny things. One of her favorite things before she rehernatied and got obstructed was fries dipped in ranch and ketchup. (But not at the same time.) So she has been eating or sampling. The sad part is comes back up the tube digested! Kinda gross but if she feels better, I'm all for it.

I'm really starting to get anxious about her upcoming surgery. I keep telling myself that it does NO good to worry and wonder. The other night I had a dream that Ava feel and her head fell off! I know bizarre. But that's not all. I put it back on and of course knew she was dead. I wrapped her up and then took her to my Mom's and Dad's and didn't tell anyone. Then I tried to leave to take her to the hospital and things kept getting in my way, the car broke down, a swarm of bees attacked us. I finally ended up stealing a very large "monster" truck and racing to the hospital. I woke up and thought....."Her head fell off...what?" I just think it meant that I feel like we keep waiting and waiting and she doesn't get any better. Oh my mind. See I never get good rest...I can blame it on that!

Today and always Ava HAS to be with her big sisters. It makes me tear up to think she will have to be away from them for a while. It is very important for her recovery for them to come up to the hospital as much as they can. So neat to see such sisterly bond. I love each one of my sisters and can't imagine my life without them. I have 5 sisters and one brother. They have been great support throughout all of this!

So on to my point. The girls cleaned up the "play room" and here they all are today stopping to pose for some pictures. I am so proud of all my girls. They truly are beautiful girls, inside and out!





Thanks for coming to check on Ava. We appreciate and feel all your love and support. Please if you haven't posted a message on either the blog or carepages, feel free to do so. I am humbled by the outpouring of caring we get from all of you! You all make this a little easier.

www.carepages.com (avahelmick)
http://avaslifewithcdh.blogspot.com
http://cdhawarenessvideos.blogspot.com
http://lexidoll.blogspot.com
http://emmerose.blogspot.com

~Terri

Welcome to my "crazy" world!

So Ava is constantly bewildering me. I started the Flagyl late Wednesday night. Our poor pharmacist had to mix it and it took quite the time, so he graciously, personally dropped it off at the house. I am amazed at how sonmany go out of their way for Ava.

Early Thursday morning Ava woke and was restless. I gave her a Tylenol suppository to help her. Then she got a slight fever. I'm thinking, "Oh no not now." Her heart rate got scary. It didn't settle. It ranged from 150-185. BUT for some reason I was calm. I suctioned her on and off from 2 am- 6 am and got 450 ml's, not to mention it was very dark green and smelly. The odd part was she never really woke up totally. She would just wine. So after her heart rate dropped back into the 140's, which is okay for her, I exhaustively, decided to go back to sleep. So the good news was when she woke she was crazy well. It was like I had my "old" Ava back. She wasn't nauseous at all. I called the doc to tell him what her output was and they were glad it had gone down but still knew it was high. We played and played all day long. I gave her a bath and noticed that she had a blister on her wound. I then covered it with her special band aids ($14.00 a piece)and measured her belly. It was "51" cm's. I just stared in disbelief. I then emailed a picture to her doctor. He thought that was normal since, it was new skin. I was not putting a bandage on it so it was rubbing against her shirt. So all day Thursday I didn't need to suction. It was like a dream. I didn't have to grab for buckets and I didn't have to worry about where the suction machine was. Lisa, our nurse, called and asked if she could come over early because she had read the blog and thought she needed to be looked at sooner. I gladly agreed. Her blood pressure was great and she had no fever! I was so excited when I smelled a dirty diaper at about 4 pm. "YOU KNOW I DO THE HAPPY POOP DANCE!" She LOVES this! (I'll have to video it some time, NOT!) Then at 5:45 pm she starting gagging and retching. My heart sunk, okay here we go again. She only threw up about an ounce. Then three hours later, same thing. I suctioned but got very little.

So now I'm up to last night. I was very fearful that since such a good day, that she was going to fall apart on me in the wee hours of the morning. Quite the opposite, in fact she slept really well. Not once did she gag or retch. I got up about 2 am and gave her an IV injection of her Zophran. (Just in case) I suctioned her at the same time and nothing came out of the tube. "Huh, very strange?" BUT hey sleep head me I went back to sleep. She woke a happy little girl as always. Very ready to tackle the day. I not so ready.....I said my usual prayer. "God thank you for giving me one more day. Help me to see all the good in this day. Bless my family. Thank you for all my beautiful girls and my husband. I ask that you lay a healing hand on all the babies and children that are struggling right at this very second. Give me the strength to face this day! In Your Name, Amen." So we head down stairs I got a call from Lisa and she was concerned that Ava should be admitted. I then told her of her wonderful day and night. She was worried. I reassured her that I was okay with how she was doing NOW. (I wasn't a few days earlier but no one else seemed too concerned.) Then Laura from Dr. Shilyanski's office called and wanted to know how Ava was doing. I told her the good news. I also explained that I thought Ava was coming to a "clear" point that her body was giving us signs that she needed surgery now. She told me she would check the schedule for next week. Here is my concern....I don't want to wait until Ava is really, critical ill and then rush her into surgery. That isn't fair to her at all. She is being patient but how long can she be this good? If it was you or me we would have demanded they do something a week after we became nauseous. We do have an appointment on Tuesday. I will be telling them this very thing, I'm telling you all. "The time is NOW!"

So I put Ava in the bath tub. This was the first time since surgery she was all by herself. See I would getin with her and then she sat on my lap. (I KNOW a lot of work but she loves baths.) She was so happy. I got her toys and she began playing and talking. As I was dressing her I noticed that her stomach looked exceptionally large. I ran to grab the tape measure. It was "56" cm's. My heart sank. I knew what was happening. The gunk was NOT going through but sitting there waiting to be suctioned. So really nothing much had changed. I called the doctor to let them know of my finding. She asked if I had suctioned. I told her no because Ava wasn't uncomfortable. Plus I wasn't suctioning because I was giving her the antibiotic through her NG and it had to stay down for at least an hour. How fun! So then at 3 pm I decided to suction. In a matter of 5 minutes I got 100 Ml's out of her tummy. (yellow) SO this is where we are right now. I worry, I try not to because I've found to worry only makes the mind wander, and what good does that do?

Please pray that Ava's body doesn't fight back hard and we wind up with an emergency. I really am baffled by what her little body tolerates. God is obviously laying His strong hands on her day and night! Thanks again for all your prayers. He hears them All!

Pictures of the last few days.

Nap time for one sleepy little girl!


Another Ava supporter hand-made her this adorable scarf and hat set. I don't know your name but God bless you for taking the time to make this for Ava. It is beautiful!


Miss "Do everything" at all times.


Miss TROUBLE! All over the place! And DO I worry? Yes she only has one small layer of skin over her open hole in her tummy! Yikes!


I just had to take this picture! Amber and Sienna she loves the horse you guys got her in the hospital. She hugs it tightly every night. Upside down, she doesn't care!


Yesterday it got up to 49 degrees here. It was so nice I opened the front door for her to see the melting snow. Notice what she is wearing around her neck? Yes that is a "real" stethoscope! She carries it with her a lot! Huh I wonder what this means?


Ava Fun Fact: She loves puzzles and books!


See what I mean....it was very large today?BUT her wound is all healed over. Isn't that amazing?


Last but not least, this is Ava lounging watching "Barney."


Thanks again for stopping by to check on Miss Ava. We love that so many care. We feel your love! To see her story on video, you can view it at the right of the page. On the blog it is towards the top and in the carepages it is in the "About Me" section. Love and Blessings to you all!

~The Helmick's

Output quite high.

Okay so Miss Ava gave me another scare yesterday. Her NG (tube that goes down her nose to her stomach) put out 1,000 ml's of green bile in about 19 hours. Plus she threw up another 200 ml's by her mouth. So I was very concerned as I just didn't know where it is coming from. I called the doctor and he wants to start her on more hydration and another round of Flagyl. (by NG tube)

So the good news is she doesn't act any sicker. She's still dancing and popping about everywhere! Over night she was very nauseous but today she has only thrown up twice this morning. SO the plan is to keep up her hydration with bolus saline through her central line and to start the antibodics. If the output stays high she will have to have surgery in the next few days. I'm hoping we can keep it all under control until she is really ready for surgery in a few weeks.

Nothing like scaring us, the little stinker!

Thanks again for stopping by and please pray that Ava improves.

I put her video on the right side of the screen so if you haven't seen it please take a look as it is her story. The ups and downs of her battle with Congenital Diaphragmatic Hernia.

~The Helmick's

Mommy performs "Minor surgery" while baby naps.

Yes you all heard right. As Ava took her nap I very carefull removed about 15 of her stitches. I am so proud of myself. I also discovered the other day that the weird spot on the upper right corner of her wound, is actually part of the black sponge from her very first wound vac dressing. Odd right? Well it was infected and we didn't know it litrally. Then since Ava was on antibodics because of Strep it helped clear this infection too! A double thank you, Lord! I attempted to remove this sponge as well. It is really deeply in but I did get most of it out. Here is a picture of my "minor surgery." Who knew of my hidden talent? Not I!

My sleeping patient.


My surgery finds. Her stitches and part of the sponge I removed.


The finished result.


Ava has been having a bit of a time again with feeling nauseous. It is hard to watch. We continnue to keep the NG tube in so we can relieve somwe of her discomfort and extra air. Her nights are a little better but still icky. She is an amazing little lady. We have a kareoke machine that hooks to our TV and surround sound. She gets me the microphone because she loves to hear me sing. We sang together this morning. I just kept telling myself. This is just the beginning of our "fun times" not the end of them. I think about her dying everyday. It is so real in our minds since we have to tackle another surgery soon. I hate knowing that she will be down again. with your help we must pray that she will be fixed once and for all and that she will bounce back fast.

She loves her Daddy. Here are a few of her and him. I remember those days of climbing on my Daddy.


Oh and case you didn't notice Ava loves wearing her "Ronald McDonald House" T-shirts. (We stayed at the Southern New Jersey RMH in Camden NJ before and after Ava was born. Judi if you have any new shirts send some our way. Ava loves them! We love our "home away from home!")


I thought you might like to see another before and after picture of her belly. Since I removed the stitches and her hole is pretty much closed up I don't see any reason to wear bandages anymore! I have to double check with Dr. Shilyanski but I'll bet she is done with them. We will be heading up next Tuesday for our appointment to discuss a surgery date. I am just ready to move forward.

This picture was taken October 31, 2008. Our Halloween scary girl!


This was her tummy on November 24, 2008. We had been home five days and she was still on the wound vac. Big opening huh?


This is a picture of it today. 1-20-09


So as you can see she is improving so extremely fast. Keep the prayers coming!


My Story~ CDH

I will be adding this video to my updates each time so that if the new followers can watch and "know" our sweet Ava and her fight to survive this fatal birth defect called Congenital Diaphragmatic Hernia. I want all to know that it does exist and it takes many babies lives each and every year. Her story doesn't end here. Her battle with this birth defect is not over nor will it ever be. Will I feel at peace someday? I hope so desperately. We will always and forever worry about her patch but I do know that God is in control and if He is then I can let go and enjoy life with my three girls and my loving husband!

~The Helmick's

The Ups and Downs.

Hey there everybody. Ava has been having really good days and not so good nights. She generally only gets sick once or twice during the day and her nights are filled with gagging and retching. I try to suction her stomach before it has a chance to upset her. Most of the time it works. Lisa the nurse was over this afternoon to see her wound dressing change. She was shocked and amazed at how great it looks. I swear it heals before our eyes. The open wound is down to "2.5 x .5". Really if her body is healing as well on the inside she should be looking great come surgery time in February. The outside of her tummy goes up and down. On Monday it measured 52cm's and today it was 54.5. I think it has something to do with all the gas and gunk in her stomach. She has been farting great today!! ;) Also pooping almost daily! The antibiotic help move things along. Too bad she couldn't be on it all the time! She only takes water by mouth. She used to eat a little bit during the day but she knows that food makes her tummy upset and that it will soon come back up. Smart girl!)

Here is a few pictures from the last couple of days.

She knocked her sister out with that punch!

Okay here she is coming down the stairs carrying her hydration and TPN pump in her baby-pack! I wish we could put her regular TPN in this bag but it is just too big! She is so great about hauling it all around with her.


(To recap all her medicines and extra needs. She is on Protonics and Famotidine for reflux. She is now taking a Phenegran suppository at night for nausea. She also can have Zophran for nausea during the day. She gets a bolus of hydration at 7pm through her IV. She is on central line IV for her nutrition 14 hours at night starting at 8pm. I change her wound dressing pretty much every day. I change her Hicmann line dressing Monday, Wednesday, and Friday. We have only been using the suction machine to suction her stomach gunk whenever we think she is going to get sick. SO of course she still has her NG tube that goes to her stomach. We are not sure when we will discontinue the tube as I feel it helps me be able to do something to make her feel a little better. (Sigh) I think that is all of it!)

So yesterday I got to thinking we have so many followers from the Cole's Foundation that really do not know Ava's "whole" story so in my spare time (Ha, ha) I threw this video together. It is her journey from birth to now. You might want to grab a tissue as most is extremely hard to watch. I hand picked these songs as they best describe her circumstances. My baby what a story she has to tell. ALL through her life God has been right by our side. I feel lucky everyday I wake up and know that each and every one of my girls is safely in my house. I know what true happiness truly is!

Make an on-line slideshow at www.OneTrueMedia.com

I will be adding this video to my updates each time so that if the new followers can watch and "know" our sweet Ava and her fight to survive this fatal birth defect called Congenital Diaphragmatic Hernia. I want all to know that it does exist and it takes many babies lives each and every year. Her story doesn't end here. Her battle with this birth defect is not over nor will it ever be. Will I feel at peace someday? I hope so desperately. We will always and forever worry about her patch but I do know that God is in control and if He is then I can let go and enjoy life with my three girls and my loving husband!

God bless and once again thanks for your thoughts, prayers and loving, caring support!

~The Helmick's

All good things.....

So hello and I know I promised an update the other day but wow have we been busy. On Sunday I decided to tackle painting my bedroom. (My Mother was gracious enough to help me.) It is very large almost the entire length of our house. It is like 30 feet by 15 feet, very large and MANY walls. But it looks so much better. OH and we also brought out her toddler bed. I wasn't sure how she would in it, but she loves it! Plus it makes life easier for me as well! So she's a big girl. now!








So now to Ava. She is really doing well. The antibiotic is doing it's trick and she is healing nicely. She is still on suction a few times a day. If I see that she looks like she is getting nauseous I suction her and then the sickness passes. BUT she still manages to throw up 1-3 times a day. This is the best she has done so far! She is pooping too! I was getting green intestinal bile but now it is either clear or yellow, which means things are passing through at a slow rate BUT are going through! She doesn't have an appetite lately this bothers me. It is expected sad to say. Her canister (suction) output is also slowing down. The last four days all I've gotten out was 300ml's TOTAL!

Her stomach is also getting smaller. I swear by this suction machine. It is taking all the gunk and air out of my baby and making her feel better. Here is how her tummy looked a few hours ago at dressing change. The wound is closing nicely!



In case you are interested this is her Hickman line without the dressing. And not that is NOT blood it is beodine. I change it 3 times a week since she has an allergic reaction to the Chroraprep. (Normally a line dressing would be on a 7 day change. Not lucky me!)



So we are hoping to take this month slow and then get her into surgery, early February. She is an amazing little girl. She is always so happy. She loves life and she loves her family! Enough talk here is a few more pictures!









Thanks for checking in on Ava! God bless.

~The Helmick's

L.E.A. ~Sisters!

Hello! I will update tomorrow but HAD to put this video of them "doing their thing" tonight for all to see. Way too cute for you to miss. As you can see Ava is doing better. L.E.A.~ Sisters stands for Lexis, Emeline, Ava ~ Sisters!

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

God Bless you ALL!

~Terri

Kick'em when your up, Kick'em when your down.

Hello to All! So Miss Ava has a new problem we learned of last night. The last three days or so I've been noticing Ava grabbing her at her bottom. Her bottom started getting red, irritated,and a tiny bit of blood. I asked them about it at the doctors on Tuesday. They told me to put cream on it and it was probably a rash. That didn't settle right with me although I did give her two suppositories the other day (per docs orders)to try and get her to pass her stool. (It didn't work.) Yesterday she wouldn't keep her pants or diaper on for nothing and she was itching so I called our local doctor. They got us in before the nightly "crowd" arrived to avoid germs. I was so happy to see that our favorite Doctor was there. They did a swab test and she has Perianal Streptococcal Dermatitis. In easy terms, Strep in her butt. Can you believe this? I called Josh in Iowa City and he felt bad. He said sometimes we forget she is a kid and she can get the very normal things as well. So for her treatment we are going to try and give the Amoxicillin through her NG tube. It has to stay down for one hour to get into her system. We did get an cream as well to double whammy it. Pray it works and fast. This may have been a big part of her problem the last few days.

Last night she slept a tad bit better. She still woke about 5-6 times whimpering. Poor baby girl but at least she wasn't crying. I suctioned only when I felt she was getting nauseous yesterday and last night. I got 500ml's out. Her urine output is on the low side so we are going to start her bolus hydration today. She is not dehydrated but they think she is using ALL her TPN to keep her hydrated and then there is not so much pee. I hope this makes sense as I was a little alarmed last night that her diaper wasn't soaked like normal. (Okay I just felt her diaper and it is pretty wet so I feel better. She is still sleeping.) She thought it was time to wake up at 6am this morning. Yea, not so good for Mommy.

On a good side, if there is one, she only threw up once yesterday. Naturally it was in the car on the way out to the doctor's office. Oh and I had no bucket. Her blanket caught it all!

We are hoping she starts to feel better soon.

Thanks for your prayers and messages. They truly help me in a way you will probably never know!

~Terri

Coping

These are some pictures from yesterday.










Hello to everyone. I got a small nap today and I feel a little bit better. My mind is still running a little slow so bear with me. Last night I was a nervous wreck having her on the suction machine because our machine isn't for "constant" suction it is an intermediate device. I called the Apria company to find out what "Low" suction meant, which was what they told us to put her on as soon as we got home. Well the guy was shocked that they let her come home. He told me that he thought if we ran her machine at constant it would burn up. Then he said there was no accurate way to set it at a low setting. I panicked to say the least. He walked me through the steps of setting it at the lower speed. Then he told me that he would see about a different machine but again it might be tough to do for a home situation. So all night long I shined the flashlight to see if everything was working properly. It was. My eyes almost never left her pulsox machine as I studied her heart rate. I knew one sign that she was in distress was high heart rate. She seemed to be doing fine heart wise. Then I got a little concern because she was putting out quite a bit but once again I am not a nurse. So I watched and got little sleep. She still rolled around about 5 times as though uncomfortable. Then she would fall back to sleep. Oh yea another thing about her suction machine is it is SO loud. It's vibration and noise could be heard through out the entire house!

She finally woke at 6am and wanted to go play. I called her doctor and asked about her output and he was thought that seemed high so he told me to set her to gravity unless she seemed to have an unhappy belly. This made me rejoice to say the least. Did I mention my pounding headache from the loud machine all night long? It was bad! So we stopped the machine and she was able to move arounf better but still hooked to her TPN. After we unhooked that she was back to her normal happy self. My Mother came over to clean this morning. "Thanks Mom!" Brian does pretty good about doing the laundry and keeping things straightened but dishes, well let's say he's not thrilled about doing them. And also Karen, Brian's Mother went and bought us groceries. I am so greatful. I just can't leave the house and Brian is always working.

The plan for Ava is to give her boluses of IV fluid. We don't want her to get low and become dehydration. That would be a little hard to do since she is on 100% TPN feeds but we need to be safe since she did throw up quite a bit and her output last night was so much. Then if she starts feeling better we wait of course. She has an appointment January 27. They want to do a revere swallow. (That is NOT the technical term so don't laugh!) That means give her an enema and see where it goes that direction. Also to do a swallow study AGAIN. I hate them and I told them NO yesterday and insinuated on the CT scan. They are pretty much the same just the scan shows a little more. So far today she has not thrown up. I say that and then it WILL happen in a matter of minutes but so far she is good. Then how do you throw up if there is nothing in your stomach? When she awoke from her nap she seemed a little more uncomfortable. We will see how she does tonight. I am not going to let her be uncomfortable as I know we will have to move surgery up.

Here is a video of yesterday. I will also add pictures of her today.

Make video montages at www.OneTrueMedia.com

She was spreading out her blankie all by herself!






On a very sad note we found out this morning that Brian's cousin was murdered by her X husband. He strangled her and then started her basement on fire. We are all in shock although we all know he was very weird and might be capible of this horrendeous act. Cyd was a wonderful, caring, lady. She was one of the sweetest people in my life. She has two daughters and they already miss her so much. Her Mother and family are just devastated. We all are. Her killer is behind bars. Thanks you God. Please pray for healing in our hearts as life will never be the same without our cousin Cyd Crawford.

Thanks for checking in on Ava. She still has a long road ahead of her. God heals!

One last thing.....all your messages well the truly give me the strength and stamina I need so to all that pop out and write I want to thank you from the bottom of my heart. You are my angels!

~Terri