Monday, March 30, 2009
Her sisters wanted me to set up studio and take their pictures with flowers like I did with Ava a few weeks ago. Well yesterday was the big day. I waited until Ava was napping and we shot some gorgeous pictures. Their ages (10 & 8) make it super easy to get fabulous pictures. So here are a few.
In this picture Emeline reminds me of my younger sister Mary. Wow do they look alike.
Miss Lexis was so pretty. Her eyes just sparkled.
This was one of my favorite ones of Lexis.
Then I promised the girls a collage. I did this for Ava already. It is hanging in our living room and I adore it. So I ordered theirs. Here is all three of them.
I am so excited my photography class is tomorrow night. I just have such a passion about bringing out each person's special traits. I wait until that moment happens then I capture it. It is finally nice to be thinking about something for me and me only. It has been so long. I love that even though Ava seems healthy to us she still is not a normal child. I remember the first time someone called her "special needs" I nearly cried. My child? I'm just happy that she is still here with us. God is good.
If I could ask you to say a prayer for a new friend of mine. Her unborn baby has trisomy and cdh. The doctors say they will not help this baby. They don't believe an operation will save her. They have told the mother to abort but she decided that wasn't an option. She is now weeks away from her due date and she is desperately trying to find a surgeon willing to operate on her daughter. My heart just breaks for her. Keep her in your prayers as her and her family are having a hard time accepting that there is nothing to be done. I know first hand that God heals and God does Miracles. We must have faith and trust that He is in control and we must let go of the wheel.
I am just awed by Ava almost daily. She is a little firecracker in an uncertain world. I am so happy to be able to Mother all three of my girls. They are all so special in their own ways. Each adding so much to our lives. I thank God for all three miracles!
Thanks again for being our prayer warriors. We know that God gives us exactly what we need each and every day.
Thursday, March 26, 2009
Well today was pizza day. The girls made their own pizza’s. I captured all the fun. Toppings included pepperoni, hamburger, canadian bacon, and mushroom! Oh I can’t forget the cheese! Ava dug right in and got her hands dirty. Don’t tell her she can’t eat everything….she can! (But didn’t.) She did eat one piece of canadian bacon!! We will take that!
“Adding the toppings!”
And the FUN part…..eating the pizza!
Thanks for dropping by!
~Lexis, Emeline and Ava
Wednesday, March 25, 2009
Sledding off the bed?
Hey! Ava was up all night Monday coughing. Last night was much better. Her and Lexis do breathing treatments together it is really cute.
So the girls and I went to Ava's doctor appointment yesterday. It went well. He thought she looked treally good even though she had a cold. Her lungs sounded clear to him. It was all in her sinuses. She waited patiently while we did the usual clean/sanitization of the room and then down she went.
I brought the good ol' standbye "bubbles" for our entertainment! Ava loves to watch bubbles. Emeline tries to catch them with her mouth. (Only my children!)
Dancing and catching bubbles, now that is Miss Ava!
This is Lex and Ava playing Guitar Hero this afternoon. A little sister love!
So the plan is to cut Ava's TPN, central line nutrician, down by 50% and NO LIPIDS! Lipids are the fat contents in the IV fluids. (HUGE YEAH for Ava!) SO this leaves her IV feeds at 280ml's over 7 hours. I decided to have them cut the calories and not the time. Well we did take an hour off the running time because at 8 hours the rate would have been 35 and that is just too slow for her. I'm hoping she won't have a problem with the 40 it is set at now. When we first started her on TPN at home her blood would back up in the line due to her heart pumping faster than the flow rate. Boy the rig jobs I came up with....first I would lay her on the floor and put the IV pole on our high king size bed! Then it worked! But it was a huge pain!
So we increased her Elecare to 27 calories per ounce. She was at 24 calories. I will continue to try and up her rate so that she is getting closer to 900 ml's per day. Right now we are at 600-700 ml's a day. She is taking in about 6-8 ounces of water on her own by mouth. They are concerned if we stop her TPN will she be about to keep herself well hydrated? This is "the big" question.
The next step, which will most likely be in 2-3 weeks, is to just give her IV fluids as I see necesary, maybe 3-5 times a week! Depending on her urine output. I was so excited about our weaning off the Hickman. I really ccan't wait until the day it is removed. See our thinking is that when you body gets used to the IV fluids it then becomes a way that the body senses it doesn't need to become more hydrated, therefore not signalling the brain to tell one it is hungry or thirsty. So when she comes off of it she may be thirsty and hungry a tad bit more. "Fingers crossed and lots of prayers!"
As I sit here and think about all my Ava has been through it brings tears to my eyes. How and why? are not questions I ponder a lot anymore. It is just a matter of getting her healthy. I was just telling a Mother the other day that if only we had to worry about regular things, like bundling up our kids warm to go enjoy a nice walk out side, or which daycare is best. No our worries are much more complex but perhaps someday our lives will become more "normal" whatever that word means! AND I'm not trying to demean all you Mom's out there that have to deal with small things....I only ask that you take a second out of your busy life to thank God for allowing your child to be healthy......to NOT have to know my daily struggles. (Not that Ava is a struggle, she just requires a lot of extra attention.)
I know I'm blessed. God gave me a wonderful husband that doesn't mind working two jobs so that I can stay at home and take care of our children. (I know how rare that is!) We just try to make life as simple as possible.
One more thing.....I'm so exicted. My wonderful cousin Mindi pointed out a big opportunity for me....a photography class! I am so excited. It starts March 31st. I will get to get away for 2 hours a week! I'm sure Brian is all up for the challenge.
Again thanks for your love, support and especially your faithful prayers. I know because of them Ava's cough has gotten drastically better today than yesterday. I give God all the glory! Love to you all!
Monday, March 23, 2009
March is CDH Awareness Month
published online: 3/23/2009
Finding joy after pain
Ava Helmick has a peppy hitch in her step, and her grin is anything but shy.
Inside her house, the 2-year-old romps around the living room like any other child her age, but Ava is a little bit different.
She was born with congenital diaphragmatic hernia, meaning the muscle between her rib cage hadn't formed before birth and many of her organs were in her chest.
Doctors built her a fake muscle, putting a patch between her rib cage, and then put her organs where they belonged. When Ava came home for the first time, she was 3 months old.
She became a little girl like all other girls, watching "The Wiggles" and "Barney" and playing with her older sisters, Lexis and Emeline.
"I thought we were out of the woods," said her mother, Terri Helmick.
But on Oct. 4, 24 months after her birth, Ava reherniated. Her intestines literally tried to "eat" the patch between her rib cage, and it became lodged in her intestines.
Terri Helmick brought Ava to the doctor three times that day, knowing something was wrong and that Ava might have reherniated. As the day wore on, Ava became more irritable and started throwing up.
Doctors insisted Ava was fine and gave her antibiotics.
"She was lethargic by the end of the night," Terri said. "She wouldn't walk, and if she did, she'd crawl up in a ball and hold her stomach, laying in odd positions."
Ava's eyes turned dark and sunk into her head.
When Terri brought Ava to the hospital yet again, doctors finally showed Terri an X-ray of her daughter's stomach. Terri could see the intestines were up past her ribcage again.
"There wasn't much choice what to do," Terri said, who choked back tears in the hospital hallway.
Ava was flown to the University of Iowa Hospitals in Iowa City, where it was 10 more hours before doctors and nurses believed Ava had reherniated.
"They told us she 'might' have diabetes," Terri said, adding that despite her vocalized concerns, doctors were 99 percent sure Ava's patch was fine.
"It was in the afternoon the next day that they went to do a GI (gastrointestinal) test," said Brian Helmick, Ava's father.
The test showed Ava's intestines were completely obstructed, and she needed surgery to save them.
The 2-year-old was prepped for a three-to-four-hour surgery that turned into a seven-and-a-half-hour one.
"When she came out of surgery, I automatically thought of her NICU days," Terri said, "but she was bigger and struggling more."
A few days later, her incision became infected, her stomach began to swell and her heart rate increased to 200 beats per minute.
Ava wouldn't open her eyes -- she thought if she kept her eyes closed she could block out the pain.
"Her stomach got huge," Terri said. "I told my sister, 'They're gonna kill her.' Her stomach was like a balloon ready to pop."
Her intestines swelled to the point her right lung was being compromised and her bladder pressure was increasing. On Oct. 13, doctors were forced to open Ava's fresh incision to relieve swelling. Inside, they found Ava had an abscess, a clear-coating infection that antibiotics can't penetrate.
The surgeon pierced it and left Ava's abdomen open to allow the infection to drain.
At night, when the nurses were out of the room, Brian would take a flashlight and look into Ava's stomach. He could see the patch, attached with stitches to Ava's muscles.
On Oct. 21, Ava had her third abdominal surgery to place a wound vacuum assisted closure device and Hickman line into her body. The wound vac would drain the infection from Ava's body and the Hickman line would give Ava the drugs and calories she needed to help her heal.
When finished, Ava had one tube running out of her body near her heart, another came from the bottom left side of her belly, and a third came from the nearly 4-inch-wide and 5-inch-long incision doctors left open.
"The NICU was a breeze compared to this," Terri said. "Now, she's old enough to know she's in pain, and it's hard to explain we'll go home in a few months."
Ava did go home on Nov. 19 with enough medical equipment Brian said they could have used a FedEx truck to haul it. Brian and Terri received only an hour of training for all they would need to do to help Ava recover.
But both said Ava's healing really started to happen once she got home.
Terri became Ava's nurse, changing her central line and wound vac as needed for several months.
At the end of January, Ava went into surgery for her last operation. Surgeons repaired and removed portions of her intestines, closed her stomach wound and inserted a gastronomy tube to feed her.
"My mom says she's (Ava) like a cat with nine lives," Terri said. "She's a little scrapper."
That little scrapper now runs around her home, a just-her-size backpack connected to her g-tube on her back. When she climbs onto her pink trike, she puts the backpack in the "trunk" and speeds away.
"When she doesn't want to carry it, she lets it drag on the floor," Brian said, but since that's not good on the thin plastic line, someone else picks it up.
Now, the Helmicks are working on getting Ava's g-tube feeds to 1,000 ml per day so the Hickman line can be removed. Ava has tolerated the increased tube feeds well for the most part, but still periodically throws up.
Ava still returns to the hospital for periodic checkups, and Terri continues to be Ava's home health-care provider. Terri says the next time they go to the hospital, they will ask the surgeon to draw a map of Ava's insides, where her small intestines lay on one side of her belly, the large on the other and her other organs have been placed where they will fit.
"This has all made us appreciate life so more," Terri said. "What are we gonna do next year? We don't know. We just enjoy our girls."
The family tries not to think too far into the future, which for Ava is uncertain at best.
"I'm not sure you're ever out of the woods with a kid like this," Terri said. "Any time you have major abdominal surgery, scar tissue grows and it can restrict" the intestines or other organs, causing problems.
But Terri and Brian know there is a reason Ava is here and why she has fought so hard to live.
"She doesn't let anything stop her," Terri said. And that means, the Helmick house is now getting back to normal.
Upstairs on Friday morning, Ava played, her giggles echoing to downstairs. She had carried a large-eyed stuffed animal under her arm as she climbed the stairs.
Terri says Ava likes to play doctor, putting the blood pressure cuff on people's arms and placing the stethoscope just above the elbow. She loves to play "Guitar Hero," but gets frustrated when the video game boos her performance. And her face lights up when she gets to go outside and take wagon rides on the sidewalk in front of her house.
"She loves life," Terri said, and that makes every minute worth it.
March is CDH Awareness Month
Each year, 1,800 babies are born in the United States with congenital diaphragmatic hernia, a condition where the muscle between the rib cage does not form and a baby's organs move into his or her chest.
The condition occurs in one out of every 2,000 live births and often is fatal, according to chop.edu.
Of those who do survive, 60 percent reherniate, said Terri Helmick, and it is unknown how many other problems children with the condition will face throughout their lives.
However, Helmick and others are doing their best to raise awareness about the condition, and research continues to be done for ways to eliminate the problem. March is CDH Awareness Month.
To help share the story of CDH, Helmick has started two blogs for her daughter Ava, born with the condition Aug. 31, 2006. They Web sites are http:/avaslifewithcdh.blogspot.com and http://cdhawarenessvideos.blogspot.com.
Helmick also has started a new blog called, "Full of Miracles," at http://allmiracles.blogspot.com. It is meant to spread hope and to highlight all types of miracles.
The blogs have drawn a lot of viewers and support for the Helmicks, who hope to share that support with others in need of it.
-- The Hawk Eye
Thanks again Shawna, you did a wonderful job!
Sunday, March 22, 2009
Shawna our favorite newspaper reporter came over on Friday. We are doing another story on her and CDH. I'm excited. She just sent it to me and it brought tears to my eyes. She always seems to capture our experiences. Shawna if you are reading, "You have been an amazing tool for us to spread awareness to so many. We appreciate your wonderful spirit." I can't wait to share the article with all of you. It is supposed to run in the Hawkeye paper tomorrow. I'll let you all know. Here is a few pictures of Ava on Friday. See the fire in her eyes?
Friday we shut Ava's stomach feeds off at 2:30 in the afternoon. It was a little test to see if she would get hungry. IT WORKED! She ate about 15 bites of a few different things. She is on the right road. This was about her appetite before she reherniated. I was so excited. However we know how important it is that she gets all her calories on the g-tube feeds, so we only do this occasionaly. But we have hope!
We have had some nice days here in Iowa. The girls love to take Ava out and then we all go on wagon rides....okay Ava rides we walk! She hates to come inside. She cries and cries. She doesn't realize the nice days are just starting!
Please pray that this cold will not bring Ava down. Her lungs did take a big hit a few months ago and I reallty pray that she is able to cough the gunk up to get it out. The bad thing is with coughing comes throwing up. Not fun but necesary to get the mucus out of the lungs. Thanks for all your messages and all your prayers!
Thursday, March 19, 2009
Speaking of toes and feet. Yesterday I was cleaning out the pantry and Ava found these. I guess she wants to "walk in Mommy's shoes"!
Ava had her first speech visit of the year with Melissa. Ava took to her right away so I was very happy. She will come once a week. I wish she would come more often because Ava really needs help....but we will take what we can get!
Her weight is increasing. She is now 27 pounds. So that is great. She's still a little peanut. Some of you have noticed her hair....it is really starting to grow. I'm so happy about this. I did put piggie tails in it the other day but I don't think I took a picture. (Sorry.) My camera and me sometimes don't agree.I am going to try to get another one soon. My goal or dream is to someday have my own studio here in the house.
So we were anxiously waiting for her to have a bowel movement on Tuesday and finally after 4 long days she did it. Oh you don't know what that does to me.....my mind gets to thinking about another obstruction. (We know this is very possible with all the abdominal surgeries she has had...scar adhesions cause them quite often.) I'm trying to be positive. SO we do one heck of a happy dance when it finally comes!
Ava received her (Jaxson's) "Blankies for Babies" today. Check out this great organization. (http://jaxsonsblankiesforbabes.blogspot.com/) This is one of my friends I have met on this amazing journey. Her son Jaxson was born with Trisomy 21. He is one tough fighter. YOu can read his story at (http://jaxsonsblankiesforbabes.blogspot.com/) I want to thank her for giving this to Ava. She loves it. What a great thing to do for these precious children. Here are a few of the pictures I took of her and her new blankie! Thanks again Lacey.
I love this picture. She was just looking at Jaxson's picture. I said this is the little boy that wanted you to have this blanket.
The girls got a new "Campout" tent a few weeks ago and their cousins came over the other day so naturally it was camp time. NO that is not a real camp fire Ava has her hands in!
She also has been having a little bit of a runny nose the last few days. Today she sounds a little bit junkie and when she throws up it is really mucusy. Let's pray nothing comes out of this cold.....if that is what it turns into.
This was Miss Ava last night just as she was about to go to bed. It takes me a good half an hour or longer to get her feeds, TPN and medicines ready just so she can go to sleep. (Sigh and my favorite part of the day is laying my head down at night. Love that feeling!)
I can't forget to mention this BIG thing. Our favorite newpaper columnist, Shawna is coming by on Friday to do another article about Ava and CDH. I am so proud of a Ava and all she has accomplished. I want the whole world to be aware that Congenital Diaphragmatic Hernia will be forever in her life. Sad part is it kills so many babies each and every day. She fought it at birth and it will not be going away anytime soon. :(
Thanks again for dropping by....you know we appreciate your thoughts and prayers. Is Spring coming? I sure hope so!
One last thing.....Ava's room mate at CHOP just turned three last week. We want to wish him a great year. He was also born with CDH and was given a 10% chance of surviving. He and his parents Kelli and Mike are such an inspiration to us. "Happy 3rd Birthday Chad. You are such a miracle buddy!"
Monday, March 16, 2009
It was a beuatiful day here in Iowa and we took full advantage of it! Once Ava is allowed outside she doesn't want to come back in. Emeline loves to pull her in the wagon.
On the go......to play basketball!
She shoots.....She scores!
Mommy's favorite pictures of the day.
I've been pushing Miss Ava hard with her g-tube feeds. Sometimes I have to back off like yesterday. She threw up a few times....not big volumes. Thank goodness! I am really thinking it won't be long and we will be able to get rid of the Hickman line. I was talking to the NP today and she was telling me that the removal of the central line is a minor surgery. It will be an out patient procedure. They have to give her the mask and put her to sleep for about 5-10 minutes. Mainly to keep her totally still. I guess I had not thought about how it was going to come out. Just another thing to think about I guess.....pretty minor compared to all this kid has been through.
Thanks for your continued support, love and prayers. God Bless you all!