Congenital Diaphragmatic Hernia Month.

Since this is Congenital Diaphragmatic Hernia Awareness Month I'm decided to post a picture a day showing Ava's CDH journey.

WARNING: SOME PICTURES MAY BE DISTURBING!

Ava at 30 minutes old. The ventilator is helping her breath. She didn’t take even one breath on her own.

On Ava’s second day of life her little body started doing these hick up like contractions. She was hooked up to a seizure machine to check for abnormal brain activity. We learned her brain was just fine.

Pulmonary hypertension strikes these babies and it is SO difficult to control. Here is Ava at 9 days old. Her Hypertension was severe and she had to be on the Oscillating Ventilator and Nitric Oxide gas. This machine shook her entire body.
 
Pulmonary hypertension begins when tiny arteries in your lungs, called pulmonary arteries, and capillaries become narrowed, blocked or destroyed. This makes it harder for blood to flow through your lungs, which raises pressure within the arteries in your lungs. As the pressure builds, your heart's lower right chamber (right ventricle) must work harder to pump blood through your lungs, eventually causing your heart muscle to weaken and eventually fail completely.

Ava right before her surgery. Dr. Adzick made an horizontal 4 inch incision on her left side under her rib cage. Her intestines, spleen, and part of her liver were take out of her left lung area and placed in their proper places in her belly. He then placed a Gortex patch to simulate a diaphragm. Surgery took two and a half hours. All was done in her NICU bed.

While our little newborn fought so hard at birth, we took the opportunity to be joyful over the normal, father and daughter similarities of their hands. "Find Joy in the Moment, no matter if it is hard."

Ava was 18 days old and still on the ventilator. Daddy was always close by watching over her.

This was a wonderful day. I held my baby for the VERY FIRST time! She was 18 days old. We had to be very careful as she was STILL on the ventilator. Brian thought it was too soon but Taryn our nurse was quite sure Ava was ready. The emotions were quite overwhelming!

Brian held Ava for the first time at 22 days old. He was very nervous. She loved it! THAT was the start of her being Daddy's Little girl!

One of the very first time we saw Ava's eyes. What a Joyful day!

We came in to the sun shining in our our baby this day. She was still on the ventilator but was wide away. Doctor told us the real healing had finally begun and she was over the big hump. Praise God!

This birth defect played a large roll in our other children's lives as well. Lexis and Emeline had to be away from Brian and I for three months. It was SO tough. We were in Philly fighting for Ava's life while they were in Iowa with family. They sure are strong girls :)

Ava was on the ventilator for 29 days. The day she was extubated she was showing ALL the right signs that she was fully ready. My exact words and prayers at the time they took it out. "I believe. I believe. I believe." I knew God was there helping her. The VERY next day she was also taken off oxygen. She didn't need it! How GREAT is God?

After Ava came off the ventilator she had difficulties sucking and swallowing, thus causing feeding issues. She tried SO hard. Her favorite thing to do was snuggle with me after eating.

The Ronald McDonald House was our Home away from Home. We would stay here for 4 months. We met so many wonderful families along the way. Thank God for the RMH of Southern New Jersey.

Ava getting her very first breast milk bottle. The feeding battle just beginning...

She hated the scale. You can see here her repair scar. What a strong willed girl she is!

My precious looking great but still battling feeding issues at Children's Hospital of Philadelphia at 37 days old.

Removing the PICC line was a great day. However the other IV's took over... just a little longer Ava.

Brian and I had to take several class in order to bring Ava home. We had to take CPR and a NG feeding tube class on how to put it in her nose and take it out. We had to take over her medicines. Going home meant lots of hard work for Mommy and Daddy. We loved the challenge!

Ava had to do the car seat test before we could leave CHOP. Funny thing was our trip home was 16 hours. I believe she passed it after 3 hours. THAT was a LONG drive home.

Dr. Adzick, Ava's surgeon from Children's Hospital of Philadelphia stops by her NICU bed to tell her good bye. We couldn't believe we were FINALLY after 47 days going home.

We left CHOP on October 16, 2006. We were finally (after 47 days) bringing our newborn home. The girls were SO excited. We would take the trip home in two days. We had a full car and GRATEFUL hearts. What a Miracle we had been given!

FINALLY we were home with Lexis, Emeline and Ava. They were so happy to see us. It was very hard to hold back the tears. This was the first time meeting their baby sister. We had been away from them for 3 LONG months. The Joy we felt....

She has delays once being home. She didn’t crawl until 8 months She didn’t walk until 15 month. She loved being home and she wasn’t afraid of anything! This is one of my FAVORITE pictures of her taken at 8 months old.

Ava did very well after discharge from the NICU. Then when she was 25 months our lives came crashing down yet again. On October 3, 2008 Ava became deathly ill. I saw it in her eyes. I took her to the doctor 3 times that day and no one listened to me. Ava's patch had failed and she was again hanging onto life. She was life flight to a bigger hospital. A 7 hour emergency surgery began to save her.

The Gortex patch that saved Ava at birth had somehow gotten digested in her small bowel causing not only for her to reherniate but to cause a TOTAL bowel obstruction. After the 7 hour emergency surgery. Ava's insides got infected causing her belly to swell twice it's size. I'm STILL amazed that she is alive today.

About a week after her emergency surgery her bowels became badly infected. Her stomach had to be opened, kept open and drained. (Her stomach would remain open for 4 months.) Her body swelled to 3 times her size. She fought so hard. Almost impossible to see your child this way.

Ava was finally discharged from the hospital after 47 days. She came home with an open abdomen and central line. I became Ava nurse.

Ava went through 6 major abdominal surgeries and 7 minor surgeries. She a fighter in every sense of the word. I find my strength from her. Oh how God has blessed us.

Ava's CDH has brought her many things. It has changed her. She is a very thankful, polite little girl who LOVES life. She enjoys to play with her sisters and be with her family. CDH is only a small part of our little girl. Her strength is AWE inspiring to all who meet her. W...e love you Ava!

We are so lucky Ava survived all her CDH battles. We learn to savor life and appreciate EVERY day that is given to us. This is a good reminder to all of us.

I look back on her CDH Journey and Marvel at How Great God has been to us. Many are not as fortunate. The technology has gotten better but still only half of all babies born with this birth defect survive.

On to the UPDATE… Ava is MUCH better. This picture was taken this morning.

She is still coughing but that is getting less and less. Her appetite is back to NORMAL! I’d say she kick RSV but all by herself! However she gave it to Lexis. Her sister suffers from Bronchial Spasms so she now is coughing nonstop. I took Lex to the doctor and she has an ear and sinus infection. This morning Lexis went to kiss Ava goodbye for school. Ava pushed her away saying, “I can’t get your cold sissy.” We laughed. Silly girl she gave the cold to her!

Thanks for following Ava’s blog and carepage. We love our Ava support and prayer team so much! Your thoughts and prayers have helped so much!

~Terri

Slow and Steady Wins the Race.

Hello Ava Followers. She is still finding her way through this nasty RSV virus. It has really hit her hard. I’m grateful that it never went to her lungs. (So far) She is still coughing quite a bit. It has wiped her appetite to nowhere land. It is so tough on me to see her weight drop. She’s lost 3 pounds now.  Only last night did she show interest in food. We were so excited. The girls were asking her, “Do you want this? Do you want that?” They care so much for her.

When we hold her you can feel her bones easily now. I cut back on some of her liquid medicines. It did not do much but cause her to be drowsy and distant. Her nose is still running a lot. Her mucus is getting much more thick. I’m thinking she may have developed a sinus infection as the snot is turning a darker color. I’ve got her on Children’s Musinex. We are still doing every four hour breathing treatments.

These pictures are from a few days ago.

Her eyes still very sad and sick. I can always tell how she is feeling just by looking in her eyes.

The girls were on the couch this morning so naturally I grabbed for the camera. Silly girls!

Huh, How do the “Helmick Girls” relax? Bubble Baths and Manicures are the pick! Glammed ourselves out this afternoon.

The final product!

And she’s back to resting…

Thanks for all your messages. We appreciate each and every one of you. We’ve been blessed to have so many love and support our family. God is healing Ava and she will be back to her good ole’ self in no time at all.

~Terri

Ava has RSV.

Hello all! Ava’s been down with a TON of coughing, sneezing and a leaky nose. I’ve never treated a “cold” that did not improve with medicine. I’ve been doing breathing treatments consisting of Pulmicort (Steroid) and Albuterol for five days now. She has not been sleeping as her cough is SO over powering! I did the Dimetapp as much as I could with no help in site. This morning I asked her what she wanted to do. She said she wanted to go to the Doctor. (As you know, I HATE taking her to the doctor as that place is CRAWLING with germs. I cringe each time my mind has to go there.) I have a stethoscope here and I knew her lungs were clear. She’s been very warm but with no “actual” fever. Early this morning I hooked her up to her Pulse Oximeter. She was less than she usually is…running 95-96 but still way on normal levels. Meaning she was getting plenty of oxygen to her body.

I was very concerned with how her eyes looked so I decided she was probably right. We geared her up with a full face mask and brought along tissues, disinfectant wipes, portable DVD player and Scooby Movie. The funny thing was my Father has been very sick with a cough as well and he was in the waiting room. He instantly noticed how bad her eyes looked, even with the mask on. She lite up when she saw her grandpa…even with the cold. Strange they both got a cold and were not around each other. As we waited for the doctor I got out the ever so long, “Ava list”. This is all her surgeries, medicines and allergies. I normally get quite shocking looks when doctors read through all of it. Finally the doctor comes in. He thought her ears looked red but not infected. Her throat was red but didn’t look infected. And her lungs sounded clear. He asked to run an RSV test and an Influenza A. I agreed thinking I’m sure she has neither. WAS I WRONG! As we waited for the test we watched Scooby Doo and the Loch ness monster. After only a few minutes Ava fell fast asleep on my lap. She is just been zapped of her energy. Finally the doctor returned and said that she had tested “positive” for RSV. I dreaded those words. I’d prayed for so many years that it would never hit Ava. She had gotten the RSV shot for the first year of her life and then some. My heart just sank. For a child with fragile lungs THIS is NOT a good thing. How could this have happened? He gave me a print out. He explained that he thought she was handling this quite well and that I was doing all the right things. He scolded me for not getting her the flu shot this year. (I can’t explain why I didn’t. However this would not have stopped her from getting RSV) So I decided to go ahead and get one right along with Ava today. Not so fun but now it is done. I voiced my concerns about her being so limp and life-less. She wasn’t getting off the couch. She wasn’t moving. She wasn’t eating or drinking well and I know she is dehydrated. He tells me that he doesn’t feel she is sick enough to be put in the hospital. (I thought to myself… buddy you don’t know this child.) NOT that I want her in the hospital I just don’t want her to get worse. My Mama Bear comes rearing out and I can’t stop her! RSV is a virus so antibiotics don’t help. Usually though there is a secondary infection that pops up with the RSV making things worse. I’m really hoping we can bi-pass that. He refilled her breathing treatments and out of there we went.

I came home and called the big guns, Iowa City. Her NP talked me through it and I felt better after I got off the phone with him. She MUST drink. She can afford not to eat as she has what 2 pounds to spare… I say that as a sarcastic joke. She is so tiny. She’s already lost 1.5 pounds. We can’t lose any more. And I was so excited that she had gained the three pounds last month. Oh I’m sure we’ll get them back plus more!

Here is where she has spent the last three or so days.

She is resting now. Could everyone say a prayer that she will beat this RSV with in home care and not have to be put in the hospital? Thanks for your love and continued prayers.

~Terri

Tooth is Dead.

Hello Ava followers! Ava has a few things going on right now. A few days ago, while I was brushing her teeth I noticed her front tooth was a strange color. It scared me. I made an appointment with our dentist this morning. She thinks that due to trauma the nerve in the tooth was damaged thus the tooth is dying. I can’t remember her hitting her tooth on anything. She says it is quite common. That made me feel a little better. This tooth is a bit loose and may be coming out sooner than it should. Dr. Gipple is hoping that she has no pain with it. The plan is to let it stay as long as it does not bother Ava. We also have to watch for infection on her gums above the tooth. When it does come out we are hoping she didn’t do major damage to the permanent tooth. Did I mention she LOVES the dentist? She has been asking to go there ever since last November. She looks SO grown up in the big dentist chair.

Here is the tooth in question. It actually looks worse in person.

I can’t believe how big she is getting. She just sat there quietly and let the dentist look her over.

Also she has a cough. I’ve started the breathing treatments and the steroids to kick it fast. Strange thing is no one else has a cold but her. She has no runny nose or any other symptoms besides the cough. I know she doesn’t have allergies so I’m hoping it will pass fast. A few days before her cough she told me she was getting a cold. I laughed and told her she was silly. I’m thinking she wasn’t so silly after all!

What a smile! I love this little doll!

I can count on my Ava warrior prayers to keep her supplied with healing prayers. Thanks for your happy thoughts and all your love.

~Terri