Featured Child~ Ava Elizabeth

Watch Ava's Journey... (I made this video last year for Ava.)

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Ava's Beginning and Our Fight to Keep our Daughter.

Every once in a while we are handed things in our life that seem impossible. We question God, we question ourselves. “Why?” It is hard to see the future. I am here to tell you there is HOPE. When doctors give the worst of news, they can’t see what God sees. This reminds me of a story. One day a little boy was sitting on the floor beneath his grandmother watching her make a cross stitch. He suddenly looked up with questioning eyes, “Grandma what are you making? It doesn’t look like anything.” “Well, she said pulling him up onto her lap, Why don’t you look at it from up here.” Wow grandma it is pretty!” Sometimes only God sees the finished product. We are only seeing the underneath, the mess.

Ava is our third daughter. When I was about 19 weeks pregnant, I kept getting these unsettling feelings. After discussions with my doctor, she was concerned as well. I measured 4 weeks bigger than I should have been. I pushed for an ultrasound, knowing I must ease my mind. She agreed. Several days later I was given the test. That is when I found out we were having another girl. The doctor spoke with me briefly after the ultrasound. He was very solemn. “I believe your baby has Congenital Diaphragmatic Hernia. We are making you an appointment with doctors in Iowa City. I want them to confirm the diagnosis.” I tried to ask him more questions but he kept telling me to go see them first. “What was the spelling of this long word?” He only again said, “Please don’t read up on it just see the doctors and they will explain everything.” I left his office and jotted down hernia on my checkbook. I went to my mothers and told her. “Well hernia your dad has that.” So we were not concerned. She went with me the next day to Iowa City. I was not scared. I really felt things were going to be okay.

Hearing the actual confirmation words, “Your baby does have Left Congenital Diaphragmatic Hernia”, meant nothing to me. It was the words that came after that were hardest to hear. He explained at 8 weeks gestation the diaphragm forms but in the case of these babies the message gets lost, or it starts to form but then stops. Meaning there is a hole in the diaphragm, thus enabling the organs to move up into the chest cavity. If the hole is severe enough the lung that is affected is not able to grow. This is one of the toughest, deadliest birth defects out there. We just don’t know until the baby is born.

I sat there listening to him but my brain could not understand what he was saying. I could see his lips moving but no sound came out. The room was spinning around me but I was very still. I felt I was in a dream and I was trying to wake up. I did catch the next few things the doctor said, “With seeing your ultrasound I would give her chances of surviving somewhere between 20-35%. We do allow the option of termination, since we know she will very sick.” I then looked at my mother and said, “Did he just tell me I could kill my baby?” It was at that point that it hit me. This WAS real. I cried and cried. This was NOT happening to me. I wanted my baby. Why was this happening?

My heart was broken. I was numb. I felt as if I had been in an accident and I was at a stand still. No where to go. No help in sight. I was certain about one thing; abortion was not an option for me. They were telling me I needed to think about getting an amnio done. If there was anything else wrong with her that would even lessen her chance of survival. Basically if they found something besides CDH they wouldn’t even try to save her at birth. The amnio was virtually painless. It was my heart that was aching. How was I going to tell Brian?

We then met with a pediatric specialist he explained again that her odds did not look good. These babies are so unpredictable. None are the same. The real trouble is the lungs. If there is no lung function the babies die. We all need strong lungs to breath. He then told us she would not be allowed to take her first breath on her own. She would immediately put on a ventilator. Often these little ones need to be put on ECMO. This is a heart/lung bypass machine; of course it is a last option. This pulls blood out of the babies body filters it and then puts it back in. There are many risks to ECMO. My brain was on overload. I was given too much information and I was becoming literally sick. My head hurt. My stomach was in knots. Crying was all I could seem to do.

On the way home my mom and I kept remembering what the doctors said. It seemed hopeless. I called Brian and he met us at my parent’s house. I told him, barely able to get out the words. “Our daughter was going to be extremely sick. I was going to have to carry her to term and then have to watch her die. I couldn’t stop crying. My thoughts were very foggy. I was devastated, totally drained. I could barely think straight.

For the next few days I was literally a wreck. I couldn’t eat. I couldn’t sleep. My mind kept thinking and it wouldn’t shut down. I called my doctor broken hearted. I told him I couldn’t deal with all of this. I needed to be on some kind of antidepressant. He told me something I will never forget. “Terri, are you eating? Are you taking care of yourself? You need to focus on the things you can control and pray about the things that you can’t.” How SIMPLE was that. “YES!” Why was I already defeated? I had grown up knowing God. I knew he did things for a reason. Getting off the phone that day I had a new vision. I HAD to overcome this huge obstacle and get my daughter to the BEST CDH care that was available. Why should I believe the doctors in Iowa City? She wasn’t dead. She was very alive inside of me now and could she survive with the help of God, maybe. I was challenged now I knew my mission. I now had a new prayer. “God let this be easy for us. Please give us no yellow lights only green ones and red ones” (STOP and GO.) I searched for days on-line, looking for potential doctors and hospitals. I called many but we finally settled with Children’s Hospital of Philadelphia. I loved their slogan, “Where HOPE begins.” It just felt right! I made the appointment and on May 15th my mom, my brother and I drove 15+ hours to CHOP. (Brian stayed with the girls we had not told them the news at this point.) I was very anxious. Would they tell me something worse? I had an MRI, a level 2 ultrasound, and a fetal heart test done to see how bad our babies defect really was. At the end of a long day we sat down with the fetal director of CHOP. He told us that the baby’s heart was pushed far over on the right side near her right lung. Her stomach was beside her heart. All of her organs were most likely up in the spot of where her left lung should have been. Bad news a portion of her liver was partially up. This usually means a bad prognosis, however when they measured her lung to head ratio it turned up quite high. Dr. Adzick told us her odds were anywhere from 45%-75%. I was very hopeful when we left. I knew she needed to be cared for by these doctors.

So now I prayed, “God you know what we need to do but how will it all come about? We don’t have a lot of money but I do know you will take care of us. I have faith in you.” Things really fell into place. We sent letters to our family and friend informing them of our life circumstance, asking them for help. We shared our story with the Hawkeye; we wanted everyone aware of our daughters CDH. We held a benefit in honor of Ava, the proceeds were unbelievable. Complete strangers were sending us money in the mail. I was humbled by God’s out pouring of his blessings. I truly felt we were walking in his perfect path for our lives.

Coming up with a name for this baby was quite the challenge. My mother wanted me to name her something with a really great meaning. I was having a hard time. I felt like if I named her Grace or Faith I was setting myself up for disaster. I was looking but came up with nothing. So I gave up for a couple of days. All of a sudden I thought of Ava Elizabeth. I didn’t look up the meaning because I was already decided on that name and was afraid to be honest. Later that day I called my mom. I told her the name we had chosen. She asked what it meant. I then looked it up, I about fell apart when I saw the words on the page. AVA means “life” and ELIZABETH means “Our oath to God.” With God’s help, I had picked her the perfect name!

July 7th came way too fast. This was the day we packed the girls and left for CHOP. I was 32 weeks pregnant. There were many things that could go wrong with these babies so we were to go early. Both Brian and I had never lived anywhere else. This was all new and very uncertain. The thing that was most scary was the unknown and the “What if’s.” We were for sure about one thing. We would never look back and wonder if we could have done more. We were doing all we could do. We explained to the girls who were 8 and 6 that their sister would be very unstable when she was born. We told our oldest that Ava could die. We did a lot of family bonding in the next 5 weeks. Our home away from home was the New Jersey Ronald McDonald house. It was wonderful. Our room was decorated in the Wizard of Oz theme. Really how true was it? “There’s no place like home!”

It was time for the girls to leave, school was about to start. I really had a hard time letting them go. Brian reassured me that we were here for Ava and that it was no place for kids. So I waved goodbye to Lexis and Emeline on August 12th. It was hard not knowing when I would see them again, but even harder not knowing if they would ever get to see their baby sister alive. This was so difficult.

Everyday I would talk to Ava and tell her about how she was going to have to be very strong. I told her she was a fighter and that she could survive. I truly could communicate with this baby. She kicked so much she would wake me at night. When she needed love I would rub my tummy and tell her to come get in Mommy’s hand. This is the honest truth, she would plop her tiny bottom right up in my hand. Coolest thing I have ever experienced. I told my doctor that I had come to terms with all this and if this was the only time we had to share together I was fine with that. Ava and I really had a connection. I knew her before she was born. I knew when she woke and when she slept. I knew the position she liked me to lie and when she was uncomfortable. I had to talk to her during her twice weekly screenings she hated to be monitored. How funny.

Well the time came and in the early morning hours of August 31, Ava decided it was time to join the real world. My mother and my sister were there with us. I was ready. Labor went as expected. I was very nervous towards the end. I was to be taken to the surgery room where there would be a team of baby specialists waiting to take Ava. Only the doctor thought I wasn’t as far along as I knew I was. I started to panic, we had come so far for her proper care and yet we were not even close to the surgery room. I begged my nurse and she against doctor’s orders pushed my bed to the surgery room. As soon as I got in the room not even 3 minutes later Ava was delivered. She was the most beautiful pink color I had ever seen. In fact my mind played a trick on me for several seconds I wondered if they hadn’t made a mistake. She looked perfect. We were told she would probably come out blue. Then realization hit and I reached for Brian. It was now all up to her. I could no longer protect her. They came in after about 15 minutes and told us she was on the ventilator and that she was doing fairly well. Brian was able to take pictures of her at 45 minutes old. They were going to take her to CHOP through their underground tunnel. Before they took her they opened the door so I could see her. She had tubes and wires coming from everywhere. Her eyes were closed and she wasn’t moving. It literally tore me apart to see her this way. My brand-new baby was fighting already.

The first time I saw her in the NICU I was very afraid. I was extremely emotional. I tried to talk to her but as soon as she would hear my voice her heart rate would increase quite high and her stats would plummet. We couldn’t even talk to her. Standing by her bed my arms ached to hold her. I told Brian, “I just want to hold my baby. Why can’t I hold my baby all I want to do is protect her from all this.” During the next two weeks we almost lost her 3 times. She had to be put on the oscillating ventilator twice and was given Nitric Oxide to help her lungs be stimulated enough to start healing on their own. The moment you stepped into the NICU you felt drained and tired. Even though I just had a baby, the focus never turned to me. There was much more concern for Ava and her fight to survive.

One day was exceptionally bad. Her stats were dropping and she was hanging onto life. Both Brian and I sat there glued to our chairs. She dropped to the 70’s then the 60’s, 50’s and 40’s. I wanted to get up and leave but I couldn’t move. The nurse called for more help. The doctor took her off the vent and started hand bagging our tiny daughter. All I could think was, “She is going to die right here in front of us and there is nothing we can do.” After what seemed like hours which I’m sure were only minutes, they started talking about putting her on ECMO. We were terrified. I finally was able to get up. I went into the family room where my mother was. “Mom she is not doing well. If the next blood gas doesn’t look good they are going to put her on ECMO. I just can’t believe this is happening.” She then went into see her. I walked the hall to the family bathroom, with tears streaming down my face. “What was going to happen?” I closed the door and slid down the wall. Then I prayed like I have never prayed before. “God we have come so far. I beg you, I beg you, please no ECMO. Save my baby. You promised me you wouldn’t give me more than I could handle. God this is too much. My heart is broken. I need to know you are with us. I want you to send me a miracle, right now. Show me, your presence.” I washed my face and took a big deep breath, and then said the six words that I meant with all my heart. “Not my will, but yours Lord.”

Walking down the hall toward her room I was comforted, a sense of peace came over me. As I got closer I saw the nurse. “Terri you are not going to believe this? I just took her blood gas and it is the best she has ever had. In fact if you would take a blood gas from any of us right now that is what we would be. I can’t believe her.”

God sent me the reassurance that day that I needed to keep hanging on. She was finally stable enough to do her surgery on day 14 of life. Ava and drama, she once again gave us a scare, in fact, one of the doctors had to hand-bag her the entire surgery due to an allergic reaction to the paralyzing drug. She wants to do things on her own. Take some of her power away and she is mad. The doctor informed us that her stomach, spleen, large and small intestines, and a portion of her liver were all up in her chest. The most unbelievable part to me was that once her organs were put back down in their proper places, her left lung actually unfolded and inflated. After her repair Ava only continued to grow stronger and get better. On September 29th she was extubated. As they were taking the tube out of her lungs I said a prayer out loud. “I Believe, I Believe.” We had seen numerous babies taken off the ventilators only to have them put back on hours later. She did great.

The next day Ava was breathing room air. That was almost unheard of with CDH babies. Her surgeon called Ava “Wonder Girl.” Our next focus was on getting her to eat. Since it had been a month since she was born she had to learn how to suck and swallow. A small task we take for granted was a major hurdle for her. But once again she made the medical staff astonished by how fast she picked things up. They were always telling her, “It’s all about Miss Ava!” They were very right.

I was determined to get her to breastfeed. Against many orders we tried secretly. She began nursing, another prayer of mine answered. On October 16th, after 47 days, she was discharged from CHOP. It was so good to finally be going home. We had been there a total of 4 months.

This was not the end to Ava's story but merely the beginning. Ava would go on to have a total bowel obstruction and a recurrance of the diaphragm (reherniation) at 25 months old.

She struggled with an open abdomen for 4 months while her insides healed. Ava went through countless operations, central lines, dehydration spells and depression. I begged the doctors to let Ava continue her care at home. I then learned so much medical procedures and IV care than I ever imagined. Whatever it took to get our little girl back is what we did.

Ava and I were honored by The Princess Projects in 2009. Ava was crowned "National little Miss Sweatheart" for her strength and determination in fighting CDH. I was given the "Heart of Gold" for my work in educating and raising awareness about cdh. We were so happy to receive this huge honor.

Ava is a fighter in every sense of the word. She amazes me daily. It has been two years since her last surgery. She is growing but is on the skinny side. She still has a speech therapist come to the house once a week. She ditched the g-tube about a year ago and has been doing pretty good managing her weight. She is such a joy. She just started preschool and although it was so hard for me to finally, "let her go" in the world. I know it is the perfect timing and it is exactly what this little girl needs! She loves life and all that surrounds her. Ava has taught us many things but the one thing I learn and still carry everyday is how good God is and how we must never take even one single breath for granted. I'm honored to be her Mommy!

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Here is a run down of all Ava's Hospital Stays and Surgeries.

►1st stay CHOP August 31 - October 16 2006 (47 days)

►September 13 2006 Surgery to repair Left Congenital Diaphragmatic Hernia.

►2nd stay GRMC Pneumonia 2007

►3rd stay GRMC Croup 2007

►August 8, 2007 Ava had surgery to put tubes in her ears.

►4th stay University of Iowa October 3 - November 19 2008 (47 days)

►October 4 Surgery for total Bowel obstruction due to Gortex patch.

►October 10 Ava's chemical burn on her arm is revealed.

►October 14 Surgery to reopen incision due to swelling and abcess.

►October 16 Surgery to remove burnt skin and place cadavar skin on her arm.

►October 20, 2008 Surgery to place Wound Vac, leaving her stomach open and placed central line. They also took skin on her scalp and did skin graft on her arm. Shaved her head entirely.

►Ava learned to walk again on November 21, 2008

►5th stay University of Iowa January 28 - February 9 2009

►January 28 Surgery to close her stomach and to place a g-tube.

►6th stay University of Iowa April 9 - April 12 2009

►April 11 Surgery to remove central line due to line infection.

►7th stay University of Iowa April 18 - April 22 Intestines are still obstructed. Ava became dehydrated and her tummy was very large.

►8th stay University of Iowa June 4 - June 17 2009

►June 5 Surgery to fix obstruction and place another central line.

►June 13 Surgery to place a drain due to an abcess in abdomen. Removed at home on June 20 because it was no longer working.

►9th stay University of Iowa August 25 - 27 High fever 105 Possible line infection

►August 27, 2009 Surgery to remove central line. No infection was found in line or blood but Ava's body was ready for removal.

►April 2010 Mini One button was taken out to be replaced and the hole could never be found. Her NP tried for an hour and a half to find the track with no luck. We decided to let it close and see how she would do with it.

►March of 2011- RSV. Ava lost three pounds in just seven days.

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Ava will always inspire me to want to help reach out to others. I don't fear being different anymore. I know that God sent her into my life to make me stronger and have empathy towards each and every person I meet. CDH does not define Ava. Ava will strive to beat and surpass all odds. I get asked often, "Is Ava through her illnesses?" I can't answer that, only God knows that. I live each day to the fullest and marvel at what a Miracle she is to me and my family. She has taught us Life is a journey and no matter how difficult the road gets there is always a door that opens to beauty and pure love. We love you dearly sweet Ava!

~Terri Helmick~ Ava's Mother

Featured Child~ Cash

"God is bigger than any statistic!"

On December 23, 2008 my husband, myself and my mom all huddled inside the Ultrasound Techs office to find out the sex of our baby. After hearing that we would be buying blue paint we were also told that there appeared to be some kind of abnormality with the baby's heart. We were sent to St. Louis Children's Hospital the first week of the new year and were told that they did not *think* there was actually anything wrong, but asked us to come back after a month so they could look again. We continued going up every four weeks until I was 32 weeks pregnant. At that appointment we were told that they were confident there was nothing wrong with our little one. The doctors all agreed that the baby's heart was growing in the left side of his chest and that he had nothing actually physically wrong with him. We were given the clear to have him at our local hospital. A week later, I received a call from the Head of Cardiology at STLCH who asked us to come back in for an appointment with a Doctor who had recently retired. She came in as a favor to the HoC and we are so incredibly thankful that she did because she immediatly diagnosed our son with CDH. We were swept away and given a tour of the NICU, held a meeting with the Surgeon that would be treating our child after birth and who also sent us into further emotional turmoil with words like ECMO, 50% Survival Rate and Indefinite NICU stay.

On May 2nd, 2009 at 1:58 AM the most perfect and beautiful creature I have ever laid eyes on came into this world. The clearest memory I have of that night is hearing Cash cry after we were told he probably would not be able to. He was immediately transported next door to St Louis Children's Hospital where he remained for 6 days until his Surgeon decided he was stable enough for his CDH repair. They were able to go in laproscopically and replace his colon, spleen, stomach and intestine and suture the hole closed. He was in recovery after less than 4 hours.

 

He remained stable until 3 weeks when he started developing SVT's, which were treated with medication.  At 3.5 weeks old my husband and I were able to hold our baby for the first time and at 6 weeks we were able to bring him home. Thank you God!

Cash was cleared from appointments every 3 months when he was 6 months old. At his First year check-up he was taken off all medications. At his 2nd year check up we were told he did not have to come back to see the Cardiologist, but unfortunately his chest xrays did show a small reherniation of his colon. In June of this year, he had his second repair and excessive amounts of scar tissue removed. He spent one night in the hospital and we came home the next day. Two weeks ago, he was once again given the all clear.

No parent should know what it is like to even have to face losing a child and my heart breaks every single time I hear of another CDH baby earning their wings. When I hear of someones pregnancy I pray they never have to know what its like to decorate a nursery and not know if it will be used or to know what it feels like to sit and cry and not  want to go to your baby shower because who knows if you will even be able to hold your child. I thank God for the blessings he has given us through our little guy and I pray for an end to CDH everyday. Cash's CDH experience has been such a journey. I still sit and bawl my eyes out sometimes because of how fresh in my mind his struggles are. I am so thankful for some of the amazing people and groups I've met along the way and I look forward to watching Cash grow and seeing his amazing, bright life unfold. 

~Lerin- Cash's Mom







Featured Child~ Rylee Mae

Rylee Mae East was born September 22, 2010 weighing 5 lbs 1 oz and 17 1/2 inches long.

Our story:

God is not a God of worry or fear...

We were thrilled to find out beginning of February of 2010 that we were expecting our first addition to our family...   Little did I know that this would be a real challenging pregnancy (not only lots of sickness and no cravings).

21 weeks we found out we are having a ♥GIRL♥ :):):)

24 weeks, we had a detailed ultrasound since when we found out the sex at 21 weeks, the main technician wasn't there. So, we had it at 24 weeks to make sure our baby was growing the way she should, etc. Well, we learned her heart was on the right instead of left. They were calling it Situs Inversus (if this was the case, then she would have been perfectly fine with no complications -- just a strange little incident and no problems with her heart). Of course finding this out, I was completely shocked and very upset.

We went to UAB here in Birmingham, AL to see specialists almost a week later and they were calling it Diaphragmatic Hernia which is basically bad news for her (you can google it to see what it says). Basically they were saying part of her diaphragm is not developed and she didn't have a left lung so they were thinking another organ (possibly liver) was pushing up in her chest walls causing her heart to move to the right.

When we went back to UAB almost 2 weeks later to see more specialists (9 doctors and assistants in the room, not including us -- which was really overwhelming and scary), we learned that she could have either Congenital Cystic Adenomatoid Malformation, Pulmonary Sequestration, or still a form of Diaphragmatic Hernia and little did I know (from the pediatric surgeon, cardiologist, etc) that my baby probably wouldn't have survived. Everyone else knew that but me (I'm thankful I didn't REALLY know when I had my suspicions because I would have been more stressed and more sick on my stomach than what I have been for 2 weeks in between doctor visits -- which has been a lot). I NEVER want to think of that possibility, but we're living in reality. I was told I am extremely high risk and can't travel anywhere other than around town that started before my 3rd trimester :( -- when someone tells you "can't" do something, you automatically want to do it! This has been challenging, but not the end of the world obviously. I just get lonely by myself during the day while my amazing husband works. But, it's for the best!

She has her left lung now (blessing) and her diaphragm is there completely (another blessing), but has some type of unknown mass on it (hence maybe the 2 names above). I will have to deliver her at UAB (University of Alabama B'ham Hospital) and they will transport her to Children's Hospital. They will run tests on her, etc. and depending on how big the mass on her lung (as they are calling it) turns out to be then they might can wait until she's 3 or 6 months old before surgery. If not, then they will do surgery after she's born. We will go through surgery to remove this mass that's not meant to be there (only pushing her heart sort of towards the right, but more in center this time). By removing the mass, we wouldn't be stressed to knowing if it could be malignant (which the surgeon said could happen later on). Better news from before, but we're definitely not in the clear just yet. She can't come pre-term or can't come pass my due date. If I hit 39 weeks and she hasn't come yet, then they are inducing me and they would rather me have her vaginally (another scary process for me). She's my everything and always will be no matter what. I'm praying and trying to make it positive for us all, especially our baby.

Another UAB visit on August 11, 2010 changed again (for the 4th time). Every appointment we had changed completely -- God is totally in control of our lives and especially our baby's life (his love overpowers our love for her and this is our blessing). Her stomach is actually pushing up into her chest walls causing her heart to push over to the center of her chest. With this information, she more than likely has Diaphragmatic Hernia which we did not want to hear, but it's not as "bad" as it could be and we are praying/ hopeful it's fixable with surgery -- which now she will probably have to have either be right after she's born, a few hours, or a day later (we won't leave the hospital without her having surgery). In the next few weeks, I'll have to start steroid shots just in case she decides she wants to come "early".

All my plans during this pregnancy have changed (not by choice). I am very hopeful for a healthy beautiful baby girl at the end of this pregnancy. I am trying my best not to "worry" or have "fear"... I'm leaning more on God to help me with my anxiety, worries, fears, and all the unknowns. I'll be 32 weeks starting this coming Thursday (August 19, 2010) and we are just waiting and relaxing for the arrival of our sweet baby girl :)

"God is not a God of worry or fear" and I'm thankful for all the wonderful prayers and blessings so far. More prayers are appreciated as this journey really hasn't even begun yet and I feel like this year will be one of the hardest years I will have to face. If I can do this, then ANYONE can face anything at any given time. I am by far, the one person who hasn't had much struggle in life... nor have I been in a hospital, had an IV, had blood taken a lot, etc. (I'm not such a big fan of "PAIN"). I'm learning as I go :)

[This is just an insight of our life in 2010 -- not ALL the details]

After a long difficult "1st" pregnancy (from sickness each day, no traveling, and not knowing all the "unknowns" with our baby girl), my little Rylee Mae East was born on September 22, 2010 at 11:29am. She weighed 5 pounds 1 ounce and 17 1/2 inches long.

On September 21, 2010 (just 3 days after my baby shower) my water broke at 11pm (I was 36 weeks and 6 days). My original due date was October 14, 2010 (Rylee decided to come about 3 weeks and 1 day early -- my little preemie girl). I always knew I was going to get an epidural (scared out of my mind about any type of PAIN). Come to my surprise (after the fact), the epidural stopped working at 7 cm then shortly after, I was 10 cm (go time) and let me emphasize "I felt EVERYTHING" -- I was terrified of this happening even after we found out we were pregnant at 4 weeks (first thought that ran through my mind was, "oh gosh... how am I going to get through labor")! I suppose God knew what he was doing when the epidural didn't last or my body didn't take all of it (however you want to look at it) because I was not "worried" about what was going to happen to our precious baby girl after she was was born. I was more concerned with the 'pain' and just wanted her to come out. Watching pregnancy shows on TLC may not have been the best idea for me. Good thing is that I only pushed for an hour before she arrived (seemed a bit longer to me). I will have to admit now -- the labor/ delivery experience wasn't as "bad" as what I anticipated, even with the crazy epidural experience.

"Baby Steps"

My Birthday, before surgery

♥ 09.22.10 ♥

Surgery day
09.28.10

Rylee had surgery 6 days after she was born on September 28, 2010 -- she had the Diaphragmatic Hernia that we didn't want to hear. This meant that the surgeon had to remove her small intestine, large intestine, stomach, and spleen from her chest back to the correct areas in her body. Her liver was the only organ that was not in her chest (before she was born, we were told her liver was the only organ in her chest -- ironic how her liver was the ONLY organ not in her chest. Good thing her liver wasn't in the chest with her other organs because the liver is the last organ to move up and we were blessed to hear that it didn't for her sake). Her heart should move back over more to the left side over time. She has both her lungs (her left lung will be smaller than her right one the rest of her life, but at least she has two working lungs and most babies with this condition do not). My Rylee is such a little fighter/ feisty girl :) I wonder who's attitude she has? :)   We are thankful she seems to have my attitude and this is what is keeping her strong during all this :)

Rylee came off her breathing tube about a week or so after her surgery (being on it since she was born) and that's when I held her for the first time, literally (no one can understand my feelings at that time -- joyful, elated, nervous, etc). She graduated to a crib and definitely took "baby steps" through her stay in the NICU at Children's Hospital of Alabama (Birmingham, AL). Our main obstacle by being in the NICU has been the "feeding process". Never did I expect her to have to "learn" to suck, swallow, and breathe (not all at the same time) and to understand that she needs milk to nourish her little body. Took her awhile to grasp the concept, but now she's becoming "hungry" as we continue to feed at least every 3 hours, if not before.

Recovering in the NICU
10.20.10

"Sleeping Beauty" in the NICU

10.24.10

After a little over a month in the NICU, it's 'Home Sweet Home' on Wednesday (October 27, 2010). She finally got to meet her big bro (Reese -- our dog). It's so nice to be home with our little blessing. No words can express how much we are thankful for and how blessed we are with family and friends during this year in 2010. Rylee's surgeon (Dr Scott Anderson) is very special to us and we will be forever thankful for him. He actually has been with Children's Hospital of Alabama for about a month before he worked with us. He came from Shand's Children's Hospital in Gainesville, FL. Anyone who knows me knows that I don't like many "Gators" (>>>---FSU-> all the wayyyy). But, he is ONE of the few "Gators" I will admire! With all the doctor appointments Rylee will have to go to during her life, I am thankful she has wonderful health professionals that is willing to take time to care for our family.

Yes, I definitely thought over and over during my entire pregnancy (from February 2010 to September 2010) -- "why is this happening to me/ us"?? Of course, this doesn't help ease my mind by any means. We realized we should put all our trust in God! This is and was God's intention for Rylee since the day of my birth (almost 29 years ago). I HAD to overcome most of my "worries" and just deal with the situation (when you are faced with life situations, it's harder not to really "worry"). The power of prayer is what we focused on. Without God's love, I wouldn't have survived this year...

We will be going through another obstacle during this Flu Season (she's on oxygen and monitors from the hospital: little does everyone really understand what we are still going through at home. We can't take her anywhere in the house except stay in our living room where we have things set up for her since the machines are taking over our life right now -- I guess our "living room" serves it's purpose...  couches, tv, and my baby. We also can't take her anywhere but her doctor appointments, but I wouldn't get her out much now anyway since we'll be reaching the Winter months). But, we can get through the Winter months if we can get through her stay in the hospital over a month. My husband has been my rock through my pregnancy and after. Without him, I would probably have more meltdowns that what I've experienced. He's going to be the best daddy in the world!! :)

We continue to take "baby steps", but it's for the best for our precious little Rylee! I can't wait to see what her personality will be like or who she'll look like more, but I have a feeling she'll be a strong and independent little person, like she's been so far -- this is the beginning of her life journey! Never did I imagine that I was a strong person myself -- I am stronger than I ever thought possible. Every "baby step" we make is a new milestone we've conquered. Thank you God for showing us the meaning of "true love" ♥

~Allison- Rylee's Mommy



Featured Child~ Seth

This is Seth's story. Let me take you back to March 2, 2010. Our youngest daughter's first birthday. I could no longer ignore the signs, and took a home pregnancy test. When it was positive, I have to admit, that both my husband and I felt an immense amount of apprehension. We had two children already, a 2 1/2 year old girl, and a 1 year old girl. Both who had their own issues and concerns. Once I did the math, I was even more concerned. This would be 3 children in just over 3 years. How, as a mom, was I going to handle it? It took me many weeks to get excited. I finally started buying baby clothes, in hope that it would help me build my excitement. It worked, by 12 weeks, I simply couldn't wait to see our baby. When I went for my 12 week neonatal appointment, my Doctor couldn't find the baby's heartbeat, so he sent me to get an ultrasound done, to make sure everything was ok. The ultrasound tech found baby's heartbeat and sent me on my way.

At 16 weeks, I had an ultrasound done on my ovaries due to ongoing pain was I was having. They quickly checked baby, and let me see, but it was too early for the measurements. I missed the next ultrasound since my regular Doctor was on 6 weeks of holidays, and didn't get back until I was 23 weeks. Our youngest daughter had an appointment with genetics at BC Children's hospital that summer, so when I was about 6 months pregnant, we drove the 1600km to Vancouver. While we had our meeting with genetics, the Doctor suggested that I get an ultrasound done, to rule out my daughters condition. So we scheduled an appointment for the next morning. That afternoon, we had a 3d ultrasound done, to see our baby, and find out the sex. We discovered that we were having a boy! We were so excited. We got up the next morning, July 16, 2010, and went in for our ultrasound. We honestly didn't suspect anything was wrong, until the Doctor told us there was, because we were there specifically for an in depth diagnostic ultrasound. When the doctor came in, and said that there was something wrong, a buzzing started in my ears. I was having a hard time processing what he was saying. There were too many facts and statistics that he was telling us. Trying to lighten to mood, he asked what we did "When we weren't sitting there trying to pretend we weren't upset" that’s when the buzzing stopped, and I started understanding. My perfect baby, was sick. Very sick. We were given the statistics for BC Children’s/Women’s hospital, which was 80% chance of survival if we ruled out chromosomal abnormalities.

We were scheduled to leave Vancouver the next day, but we had to delay our departure for an appointment on Monday for an amniocentesis which, though a difficult decision, we decided was best. We also had a non stress test, and an appointment with MFM (maternal/fetal medicine) since I would have to deliver at BC Children’s/Woman’s hospital. Then a fetal echocardiogram on Tuesday. We could leave Wednesday after the initial results from the amniocentesis came back. The amniocentesis came back showing that his chromosomes were 'normal' and he was definitely male. They told me that they would email me when we had to be back to wait for the baby to come. We left, feeling like the ground had been ripped out from under our feet. Our girls now said routinely "Is Mommy sad?"

When we got home, we started fundraising. We decided that since the girls were so young, that they would come with me, and that my mom would take a leave of absence from work, to help me. My husband would stay back until just before baby came, and then he would fly down for 2 weeks before going back to work. This meant that we needed to raise enough money to cover my mom's wages, and extra living costs. It was hard to talk about. Every time I thought about my baby I started crying. After the first couple of weeks back at home, I got upset, I said to myself, and my son "We will get through this! You WILL be fine! You will be strong and stubborn and fight, because there is no other option!" I refused to allow myself to even think about the statistics. We were scheduled for our first round of appointments on September 22, 2010. So we left on September 20 (4 days before our oldest daughters 3 birthday). After 2 days of travelling we got to the Easter Seal house in Vancouver. We started to settle into our small room. Our prenatal appointments were every week. I would have an ultrasound, a non stress test, and then MFM. Each appointment was also followed by blood work, since my blood pressure was high every time I had an appointment. I met with a Neonatologists, to better understand what would happen once the baby was born. When I wasn't at the hospital for that one day a week, we just tried to stay busy. We played tourists right up till I had the baby. I was scheduled for a c-section, due to 2 previous, for October 20. My husband was scheduled to fly in on October 15, to give the girls a couple of days to get used to Daddy again, and to prepare them for Mommy being in the hospital. On October 6, I had a set of appointments, I would be 37 weeks the next day. I was anxious hitting this milestone, since I had gone into labor with our youngest daughter at 37 weeks. I got everyone to do an extra thorough check. I had the doctor check my cervix. Every one said that they were pretty sure that I would make it to the scheduled c-section. Thinking that I had covered my bases, we took the girls swimming. That evening, I was tired, so I told my mom that I was going to go to bed early. I climbed into bed at about 7:50 that evening, and I jumped back out just before 8pm when my water broke. I cannot even explain the panic that set in. I knew that my husband was going to miss the birth, and that terrified me. I didn't know if I would have a baby the next day. I was nearly hysterical. My husband got to arranging an early flight. My mom called my cousin to come and stay with the girls. I got to the hospital, and they hooked me up to all the monitors. Seth was born at 1:32 am October 7, 2010 exactly 3 weeks before his due date. He gave 2 week cries before they intubated him.

After I was released from recovery, I was taken to a room. They told me that someone would come and get me, when I was allowed to see Seth. I laid there, trying to sleep, but every time someone walked the halls I jolted awake, hoping it was someone coming to take me to see him. At 7:30 I finally called the NICU, and the nurse told me to give them a half hour for shift change, and to come on down. Just as I was getting out of bed, and into a wheelchair, my husband walked in so we both went to see our son. It was difficult to see him, he was fighting the respirator. We stayed for about half an hour, before I had to go back to my room for breakfast and a rest. When we went to see him again, they had given him a drug to paralyze his muscles, so that he couldn't fight the respirator anymore. His blood pressure was low, so they gave him a medication to help with that. They were also doing the first of many echocardiograms on his heart. The Doctors were quite concerned about the pulmonary hypertension that he was struggling with. After they took him off the drug that was keeping him paralyzed, they kept him sedated with another. They were also trying a few different ways to help decrease the hypertension. By day 9 (October 15, the day Daddy was supposed to arrive), they felt that he had stabilized enough for surgery. We went and saw him in the morning. They had shaved half his head, and inserted a PICC line. We talked to him, and the Doctors. We then watched them wheel him away. They told us that they would have him for about 4 hours. 8 hours later, they brought him back. They had repaired the CDH with a Gortex patch about the size of a Canadian toonie. During his surgery, they discovered that he had his bowels, part of his kidney, part of his spleen, and part of his liver all in his chest cavity. His post surgery x-ray showed that he had about 1/4 lung on the left side, and about 3/4 lung on the right. He was kept sedated for a few days, but he wasn't receiving any addition oxygen. He was on 'room air'. He continued to improve. He was moved out of his private room, into the nursery where he received 2/1 care by a nurse. He was extubated on day 14 (October 20, the day of his scheduled c-section) and my husband heard him cry for the first time. He did not receive any oxygen. He had his first meal of 3 ml's of breast milk the next day. We were moved again, to a nursery where he received 3/1 care after an echocardiogram showed that his hypertension had resolved itself. He continued improving. His PICC line failed and was removed. IV's were inserted for his medication. We got to full feeds by NG tube on October 31. He drank his first full bottle a few days later. He was completely off all medications on November 7. We were discharged on day 42(November 17). He was exactly 6 weeks old. The Doctors and nurses in the NICU were completely floored by his case. The early days they were talking about ECMO, and then he was discharged at 6 weeks with no oxygen, no medications, no feeding problems, no reflux.

Seth is a true miracle. He is now nearly 9 months old and he is showing no delays or developmental concerns. He is just a normal healthy boy with an incredible story! We saw genetics again, for Seth, and they wanted to get the complete picture of his chromosomes. I only got the results back yesterday. They had found a small duplication on the long arm of chromosome 20. Now we have to see if my husband or I have the same duplication. If neither of us do, then this may be the cause of his CDH.

I have to say that the hardest part for me, was feeling like I had to choose between my girls and my son, and watching them all struggle. Seth with his health, and the girls with the whole experience. We still have monthly Doctor’s appointments, and we are still careful not to be around people who are sick, but we are beginning to just live a normal life again. CDH has changed MY life forever! I hope that it doesn't change my children's.

~Jess- Seth’s Mommy

Featured Child~ Michelle

 

This is the story of Michelle Leigh Dems. Michelle’s story begins on January 19, 2010 with a trip to Hillcrest Hospital. With Michelle being our third child we were well prepared for what the day would bring, and we were excited to hold our daughter for the first time.  However nothing could have prepared us for what was about to happen to our family.  Michelle was born without a cry.  She was struggling to take her first breath.  We immediately knew something was not right.  As the minutes passed more and more hospital staff began working on Michelle.  She was taken from the birthing room and moved to the Neonatal Intensive Care Unit at Hillcrest.

We sat in the recovery room for what seemed like hours in shear panic as the doctors figured out what was wrong with our baby.  We were finally told that Michelle was born with a right sided diaphragmatic hernia and would need to be transported by the critical care team to the Cleveland Clinic.  The doctors explained that during development Michelle’s diaphragm did not fully develop allowing her bowels and liver to enter the right chest cavity which prevented her right lung from forming along with many other complications.  Later we found that 2000 babies every year are born with this malformation and the survival rate is 50%.  As we were waiting for the critical care team to arrive they let me see our daughter in the NICU.  She had wires and tubes attached to every part of her body, she was breathing with a ventilator.  Since my wife delivered by cesarean she could not get out of bed to see our daughter before being transferred to the clinic.  Even though time was of the essence the Cleveland Clinic critical care team wheeled Michelle’s portable transport unit into my wife’s room so she could spend a few minutes with our daughter before being taken to the clinic.  This was very difficult as my wife knew it would be days before she would be with Michelle again.

Not understanding the full magnitude of our daughter’s condition we figured that we were going to the clinic so our daughter could have immediate surgery to repair her insides.  Once meeting with the surgeon he explained that they would need Michelle to stabilize before surgery.  This usually takes several weeks and increases the chances of a successful surgery.  Doctor Rodriguez was assigned as our primary doctor and he explained that we were in for weeks if not months of highs and lows as they tried to save Michelle’s life.  The hospital staff compared what we were about to endure to a roller coaster.  One hour there may be good signs and the next it could look very bleak.

The two weeks that followed were exactly as the NICU staff explained.  One minute Michelle would be resting comfortably and even though she was being kept alive by machines her readings would be stable.  Then out of nowhere her levels would drop, and in would rush the hospital staff to try and stabilize her.  Michelle was so sick she had her own dedicated nurse assigned to her around the clock to monitor her critical levels.  During the first weekend in the Cleveland Clinic NICU what little lung tissue Michelle had on the right side along with her left lung filled with fluid which prompted moving her from a ventilator to an oscillator to breathe for her. We moved into Ronald McDonald house so we could be close to the clinic in case we had to get to Michelle’s bed side quickly.

The fact that Michelle’s organs were not where they were supposed to be made it difficult for the surgeons as they planned her upcoming surgery.  The lowest point of the entire ordeal came when there was a possibility that her liver and heart wall had fused since both organs had developed within the chest cavity.  The only way to know for sure was to have an MRI to determine the location of all the internal organs.  Unfortunately, Michelle was not stable enough for an MRI, and there could be no surgery until the MRI was performed.  It seemed that every time she would be scheduled for the MRI there would be a set back pushing the tests out further.  All we wanted was to get her to surgery so she could start to recover.

The day finally came where Michelle would be moved down to the MRI room.  It took several staff members to move her and all of her machines including the ventilator.  The turning point in Michelle’s short life came when the results from the MRI showed that there were not any major attachments of organs which meant that the chances of a successful surgery were greatly increased.

A little over two week’s after her birth Michelle was stable enough for surgery.  A few hours before surgery we met with all the different individuals who would have a hand in helping our daughter survive during the procedure.  That morning before surgery was the first time we held our daughter.  Still hooked to all the machines she was taken out of her isolate and placed in our arms.  After spending a few minutes with both of us she was taken to surgery.

After 3 ½ hours we were ecstatic to learn that the surgery was a success.  The surgeon was able to get all of the organs back in place and repaired the hole in Michelle’s diaphragm with a gortex patch.  Once the organs were out of the chest cavity it was discovered that there was some lung tissue on the right side.  The relief our family felt is indescribable.  For the first time since Michelle was born we had a real feeling of hope that our daughter would be able to recover from this malformation, and live a successful life.  We were warned that there was still a long road ahead with several possible complications. 

    We were told the next step in Michelle’s recovery would be patience.  She would have to learn to breathe on her own, after being intubated since birth. Learn to eat so she could get strong enough to be released from the clinic.  One of the most remarkable aspects of the time following surgery was how quickly Michelle got strong enough to begin breathing with less and less help.  After surgery she was placed back on the ventilator to help her breathe.  It was only a couple days after surgery that Michelle was upgraded to a CPAP machine which allowed the tube that had been down her throat since birth to come out.  After a short period of time the only assistance in breathing was a canulla with room air.  Even though she was still hooked up to a variety of machines we were able to hold our daughter any time we wanted.  As the weeks went by slowly the wires and machines began to disappear.  The last major hurdle was getting her to eat enough so that she could be released.  It took several weeks but Michelle finally was eating enough to be considered for release.

    On March 2nd exactly 6 weeks to the day of her birth Michelle was released from the Cleveland Clinic, and we were able to take our daughter home for the first time.  Our family will never forget the entire NICU staff that showed such knowledge and compassion while saving our daughter’s life.  We will always remember our new friends at the Clinic as Michelle creates new milestones in her life ahead.

~ Michelle’s Dad

Featured Child~ Laycee

Laycee Renae entered this world on April 17, 1993, full term, 8 pounds and, with an undiagnosed left CDH. Because our local hospital was not set up for such a critically ill child, arrangements were made to send her to Cook Children's Hospital in Fort Worth. During the flight, the physician determined she would need ECMO in order to survive, so she was rerouted to Presbyterian Hospital in Dallas where she would spend the next 4 months in NICU. She was on ECMO for 21 days and during that time, her hernia was repaired with a gortex patch. She also suffered a massive stroke to the left side of her brain, literally wiping out all centers for speech and right sided motor movement. I did not know my Laycee at this point...she would enter my life at the age of 4 months at the time of her discharge from the NICU. I am an RN who was providing foster care for medically fragile children. My job was to care for the children, make them as "user friendly" as possible and work closely with the parents to prepare them to care for their special child. In Laycee's case, her mother was all of 15 and simply unable to take on such a huge task. I adopted Laycee and buckled myself for the roller coaster ride of my life.

When she was discharged from the NICU, Laycee's physicians told me to "have fun because she would just stare at the walls." Her brain injury was severe and her chances for a positive neurological outcome were slim. Of course, I could have easily slapped the man, but the NICU door locked before I had a chance to respond. I could tell with my first encounter that this girl was a fighter and she was not going to be held back by a "little" brain issue. Laycee was still very ill when she was discharged from the NICU.

I often wonder if they did not send her home with the thought that she would die. I had other plans. I was determined that this child deserved every chance possible to live. She still had a huge PDA and SEVERE GE reflux. I kept her crib in my room and with the continuous oxygen, monitors, feeding pump, etc...it looked like intensive care. I remember one night I marked a piece of paper every time I had to get up and help her breathe because she had vomited and was choking...the next morning I counted the marks and there were 27. TWENTY SEVEN times that this child had had to fight to breathe. Anyway, I had her care transferred to Cook Children's Hospital and she finally had the fundoplication to allow her to be fed without all the drama. I will always remember the surgeon, Tim Black, coming out after the surgery and telling me that the surgery took twice as long because she was literally glued together on the inside. He said her liver looked nothing at all like a liver and it took him 10 minutes to even figure out what it was. But it worked!

We still had the issue of the PDA and she was beginning to decompensate. Her oxygen needs were becoming greater and she had gone into congestive heart failure. At the age of 8 months, she underwent her PDA repair. Because her heart was on the right, they had to go through her sternum to perform the repair. The day after her surgery, she had to be rushed back in for an emergency procedure to drain the fluid from around her heart. She came out with tubes coming from and going into the sac around her heart. She had a Group D strep pericardial infection and, rather than spending the traditional week in PICU, she was there for 27 days. She spent her first Christmas in the hospital and, because I had previously been scheduled to work that day, I did not get to be with her. The nurses were kind enough to call me and tell me how precious she looked in her Christmas outfit.

The following years were great. Laycee literally thrived. She was walking by the age of 3, and despite the lack of speech centers in the brain...she NEVER stopped talking. It was wonderful to see her so happy.

When she was 8 years old, Laycee developed a respiratory infection that simply would not go away. After a few weeks, she began experiencing severe headaches and was unable to even stand up due to the pain. She was diagnosed with viral encephalitis and, once again, we were strapped in for the roller coaster ride. Her behaviors became very unpredictable. She would get up in the middle of the night and leave the house. I had to install locks high on the doors to keep her safe. I was terrified. She also developed seizures...a new issue. Luckily, with time and a lot of patience, she recovered and became the happy, bouncy little girl I had always known.

Of course, she could not let it rest. She was diagnosed at the age of 10 with Tourette's Syndrome (her maternal grandmother had Tourette's). At first, I was determined it would be ANYTHING but Tourette's but, finally had to come to terms with it. I realized she had been showing signs most of her life but, we had always attributed her behaviors to just being "Laycee." Now, I hardly notice it...she can scare the pee out of people who do not know her or her Tourette's though. Luckily, she was not one of the 10% of Tourette's sufferers who curses.

Next crisis...Laycee required a scoliosis repair at the age of 11. It was soooo very difficult to allow her to have the surgery but it was progressing very quickly and her lungs (which only one is "good") were being compromised. She underwent the surgery and, because of her history of CDH, they were not able to perform the anterior approach to her spine. Instead her orthopedic surgeon, Dr. David Brown (God Bless him) used a technique that has rarely been used in the United States. He used a different type of screw that was much longer to prevent her spine from twisting as she grew. That was five years ago and she looks great.

Now we can rest...right? WRONG? Just a few weeks after her 13th birthday, Laycee woke up one morning and complained of a tummy ache. I briefly considered appendicitis but quickly realized that with her CDH history, I really did not know where her appendix was. She was still eating and drinking and pooping so, I thought she probably had a virus. By the third night, her abdomen began to swell. I took her to her pediatrician and she was diagnosed with a bowel obstruction. A direct result of her birth history of the CDH (the ugly monster just never goes away). She was sent to Cook Children's Hospital where she underwent surgery. I was told the surgery went well and that her intestines looked good (no areas of necrosis). She was transferred to the surgery floor to recover and, in her usual fashion, was up and walking and wanting to eat within 24 hours. All of a sudden, she doubled over in pain and I knew something terrible had gone wrong. Her abdomen began to swell again, and, at one point, her pain was so great she did not even recognize me. She was having difficulty breathing and began requiring oxygen. Despite all this, her surgeon (not one we had used before or that I would recommend) kept telling me she was "fine." Finally I asked that her pulmonologist be consulted because of her breathing problems. She is woman who does not hesitate to step on toes if she sees a child in need. Sure enough, she took one look at Laycee, placed her on antibiotics and called the surgeon to tell him she HAD to return to surgery immediately. She was rushed back to surgery, now in septic shock.

The anesthesiologist told me he did not think she would make it through the procedure given the grave nature of her condition. I was devastated, furious and scared to death. She made it through but was now in extremely critical condition and in PICU on a ventilator and all types of supportive drugs. It turned out that she had developed a leak in her intestines and they found 2000cc of feces in her abdominal cavity. That poor baby had suffered with that for almost 48 hours before being taken to surgery. Five days later, I thought things were getting better when she began leaking feces from her abdominal incision. Once again, she was rushed back to surgery (only after I insisted that a new surgeon be brought in because her present one said the leakage was nothing to worry about). This time they cleaned 1800cc of feces from her abdominal cavity. Three days later it happened again. This surgeon suggested that we might just want to "wait and see." I think it was his way of saying, "let nature take it's course." That is fine, except my daughter wanted to live. I insisted she be taken back and, once again, another 1800cc of feces. This time she came out with an ileostomy and the surgeon told me there was nothing further that could be done if she leaked again. I was thrilled she made it through another surgery and terrified that she might leak again. She didn't. Of course, the next 2 months were a nightmare. She developed ARDS because of her severe sepsis and had to be placed on nitric oxide because of pulmonary hypertension. I lost track of the number of times she had to be drained of abcesses in her abdomen.

Finally, after almost 3 months, she was weaned off the ventilator but still required bipap in order to breathe. At that point, I began making plans to bring her home. I knew she still needed a lot of care but, I also knew she would do much better at home and, I would no longer have to fight with medical professionals to keep her alive. It was so difficult to convince them that prior to this illness she had been a "normal" happy little girl. They saw a swollen, scarred, critically ill child with a g-button and assumed she was a "vegetable." Pissed me off!!!

She made it home and we began the long road to recovery. She developed pancreatitis due to TPN (she was on TPN for 8 months) and had to have her gall bladder removed. In addition, her ileostomy was reversed (YIPEEEE) and she had to be rehospitalized for a fungal sepsis (another Christmas in the hospital). It has taken a full 3 years, but Laycee seems to be Laycee again. She does suffer from lung problems because of the ARDS and requires frequent oxygen supplementation. She also was diagnosed with autonomic nervous system dysfunction (probably as a result of the severe sepsis) and has times when her blood pressure and heart rate drop to dangerously low levels. I had a port implanted a year ago so that I can give her IV fluids when this happens and we can avoid a hospital stay. She still has her G-button (placed when she was 3 months old) and it really comes in handy when she is sick and requires extra nutrition. Otherwise, we just use it for medications.

I truly believe Laycee is a miracle. Some people look at her history and wonder "Why?" Why put her through so much? Believe me, I have asked the same questions many times but, it always comes back to one thing...Laycee wants to live and absolutely loves life.

She can make a room shine just by walking into it. She has an uncanny ability to sense when someone (even strangers) are hurting and she can empathize with their pain. She has walked up to people in a parking lot and said, "Are you okay, you look sad." They look at me as if to say, "How did she know? "She will hug them and they walk away smiling. I feel that Laycee will know when her time on this earth is complete and I will be there for her. In the meantime, we will continue to fight and will continue to enjoy each and every moment she breathes the beautiful air God has provided. She is my joy, she is my oxygen.

~Valerie

Featured Child~ Claire



We found out Claire had CDH during our 19-week ultrasound.  We had never heard of CDH before, and it was only after we got home and looked it up on the internet that we realized the severity of it.  Claire's CDH was labeled as "moderate" (stomach and intestines were up), and no one really knew how she would do.  At 36 weeks I had to be induced due to pre-eclampsia.  Claire was born weighing 5lbs 8oz and surprised us all by pinking up and crying LOUDLY.  But she soon started having a lot of trouble breathing, so they intubated her and transferred her a few blocks away to the children's hospital.  She was able to remain on a conventional ventilator, and had her repair surgery at 6 days old.  They were able to do a primary repair laparoscopically without using a patch, but had to pull her existing diaphragm really tightly to attach it to the other side.  She came off the ventilator at 10 days old, and was able to go home after 22 days.  She came home on oxygen and drinking milk from a bottle.  She came off the oxygen at 6 weeks old, and was eventually able to breastfeed.

At her 1-year follow-up appointment the surgeon told me Claire might be developing scoliosis, but that it was "mild".  At her 2-year follow-up appointment we saw a different surgeon, who looked at her chest x-ray and also said the scoliosis curve was mild.  I noticed some asymmetry of her ribcage, but was told it was probably due to the CDH.  By her 3-year follow-up appointment last summer I was becoming concerned about noticeable curvature of her spine and the way her bottom left rib poked out.  The surgeon looked at the x-ray and agreed that the scoliosis was worse, but also noticed that her diaphragm had reherniated and part of her colon was coming up through the hole.  We were really surprised since she'd had no symptoms of reherniation.  The CT scan confirmed it, and she had surgery to repair it last October at age 3.  This time they put in a gortex patch, and were able to do everything laparoscopically again.  While in the hospital she acquired a C diff infection following the routine dose of antibiotics they put in her IV after the surgery.  She became severely dehydrated due to colitis and was in the hospital for 7 days.  We returned to the ER a few days later for a bladder infection.

Last summer we were referred to an orthopedic doctor about her scoliosis.  He did a full x-ray of her spine and measured the curve at 38 degrees!  It was difficult for the CDH surgeon to see how bad the scoliosis was from a chest x-ray alone because he was only seeing the top half of her spine.  The orthopedic doctor said the scoliosis was probably due to the tension on her diaphragm from it being pulled so tightly during her first repair surgery.  She began wearing a Boston brace for 16+ hours per day last November to try to keep the curve from getting any worse.  She will need to wear the brace until she is a teenager and stops growing.  But since she is so young and the curve is already pretty severe, chances are she will eventually need spine surgery.  We are trying to prevent this or delay it for as long as possible.

Claire will turn 4 years old next month, and you would never know she has faced so many obstacles.  She is very energetic and is always smiling and dancing and singing.  She has lots of friends and loves going to preschool.

To Read More about Claire   http://babyclaire07.blogspot.com/