Tuesday, December 13, 2011

Featured Child~ Adam



    Adam’s story begins about 6 weeks before he was born. July 2nd, 2002, I was working for a major retailer as a department manager and stocking shelves in my department. I had just emptied a box of wicker baskets and was bringing them to the shelf where they belonged. Someone (we never found out who) left an empty red plastic pallet full of rain water laying on the sales floor that fateful day, it was better than spilling water all over and making more work for themselves. I came around the corner with my huge seven and a half month belly and six wicker baskets further obscuring my view of the floor and saw the pallet there. I went around it and when I thought I was passed it moved just a little to the left side of the aisle towards where the baskets belonged. I caught my foot on the very edge and since it was full of water instead of being empty like they usually were it was weighted down and did not move. I fell on my belly. A co-worker, I don’t remember whom, passed by a second later and saw me sitting on the floor obviously shaken. My mother, who was working at the same store, was called immediately as was security, for the incident report. I spent the next 24 hours at Lakeview Hospital in Mandeville. Now you may be thinking, “Why is this important to my story?” They did 2 ultrasounds while I was there making sure that my precious boy was all right. They didn’t see that he was not. It was the last chance they had to diagnose him before he was born.

    Adam was born on August 14th, 2002 at about 1 pm at North Oaks Hospital in Hammond, La. Everything was going well except that they were having trouble getting a stable heart beat on him so they needed to place internal monitors to keep better tabs on him. They did not know. When he was born he let out one lusty scream and quit breathing. I have only half joked with pregnant women since then, in telling them that when the population in your delivery room triples you know there is a problem. Adam was whisked away to the NICU where they were going to try to stabilize him and find out what was wrong.

   About 2:30 pm a NICU doctor came in and introduced himself to two very scared and worried parents. Dr. Villalta told us that Adam has a condition called Congenital Diaphragmatic Hernia and his was kind of rare since it was on his right side. Since it was on the right side and the liver was in it’s normal place it was not seen on the ultrasounds, my fall did not cause it as the diaphragm is formed at about eight weeks. Worse news was too come. “North Oaks does not have the facilities needed to treat his condition but when I was in med school I interned under a fantastic doctor who specialized in this kind of situation and his hospital has ECMO which he may very well need,” is what he told us. Adam needs to be life flighted as soon as it can be arranged; we are sending him to Oschner hospital in New Orleans, where Dr. Adolph will care for him.

    Dana left right away with his mother to meet them there leaving me with my mother to comfort me. At about 4:30 they came in with him for me to say good-bye they gave me a Polaroid picture of him and told me how the flight was planned to go.



    Adam was in such a critical condition that they were afraid that altitude changes might kill him so they were planning a flight over Lake Pontchartrain just above the treetops. The 30-minute flight seemed like a lifetime to me.

    The nurses left me in the room he was delivered in so that they could keep a close eye on me, encouraged me too start walking as soon as I could because I was going to need to be able too the next day. Exactly 24 hours after he was born they sent my mom and I on our way.

    It took us forever to get there. My oldest needed more clothes, my 2 iguanas needed to be brought some where because we did not know how long it would be before we came home, mom insisted we clean up the house from 2 days before so that I didn’t have to worry about it when we did finally come home. We had to stop here and there for one reason or another. I swore I was going to go nuts because she had a hundred things to do and I needed to be with my son. I just knew I needed to be at Oschner.

    When we finally got there I was exhausted and my husband insisted that I sit in a wheel chair and he would take me to see our baby. I got there and he called the nurses station to let us in. Adam was on what looked like a padded table. He had a tube from his belly button to a machine; he was on a high frequency ventilator that seemed to bounce him all over. The nursing staff gave me a minute to be with him and then brought all the paperwork they needed to have so that they could care for him, they also called Dr. Adolph so he could explain what was going on and a councilor to help with our needs. That was when we were told about Cherubs, and given our first real information as to what we were looking at.

    Adam was stable enough on the third day to do his repair. He was too critical to move to an operating room because the altitude change may have destabilized him, so they closed the NICU and did his surgery there. We stayed out in the waiting room with all the other parents until one came in upset that they wouldn’t allow her into see her baby since they were doing surgery on “someone’s brat.” I walked out of the room and sat in the hall while other parents berated her for her insensitivity. When the surgery was finally done Dr Adolph came out and told us that all went well.  His hernia was larger than they thought and the patch was sewed directly to his ribs on 3 sides, they had to remove his appendix as it was in the wrong place, and he has a mulitcystic dysplastic kidney that he didn’t know if it was functioning. That was something that could wait until he was stronger to find out since his other one is normal.

    That night we stayed at the Ronald McDonald house on the other end of NewOrleans. We received a phone call at 7 am on day 4. Adam did not have a good night. His respirator quit working and they were unable to get his saturations backup on the new machine. Dr. Adolph thought his best chances for survival laid on a path that scared us to death. ECMO. We consented to the operation and they started right away. By the time we got there at 8 he was on the machine and doing better. For those who have never seen ECMO imagine your precious infant paralyzed with a small clear garden hose coming out of his neck, filled with blood. A machine pumping all of the blood out to oxygenate it then putting it back in. This machine destroys blood cells while doing all this so they are constantly checking his blood, and adding blood parts, 23 units in  10 days in our case. He is on blood thinners to keep it from clotting because a clot can spell disaster, anything from mental disabilities to a killing stroke. Adam spent 10 days on ECMO, on day 7 they decided that he needed a chest tube to drain off the fluid in his lungs. They drained enough fluid to fill a 2-liter bottle.

    We stayed at the hospital hotel, my then 4-year-old daughter was brought to us, and mom made sure we had everything we needed. The hospital provided day care for Skylar so that we could visit Adam and she didn’t have to see him in the condition he was in unless she wanted too. They also helped with food vouchers so we could eat in the hospital for free. They needed us to be close by all the time in case something happened. I will be forever grateful of the care we got while Adam was at his most critical.

    On day 14 he came off of ECMO to our great happiness. Adam was doing much better his O2 saturations were up around 97% and he was on a regular ventilator. They were slowly able to wean him off of it in 11 days. Adam still had a long road though. When they got him off the vent they started feeding him all the milk I had been faithfully pumping because he was going to need it. We hit a roadblock at this point. Adam had developed nipple aversion we think because of the respirator; at first it was all we could do to just get him to suck a pacifier. He also had severe reflux and would vomit most if not all of the milk; his diaphragm was not strong enough to hold down food. Adam needed a fundoplication and at the same time they would place a g-tube so that they could get rid of the nasal canula.

    We did eventually find out that the kidney was non-functioning and as good as dead but did not need removal as it was in a sterile environment and would eventually be broken down by his own body. As long as his health was stable they would leave it alone.

    About a week after the last surgery I was changing his diaper and noticed that he was a bit blue around his genitals. The nurse said it was nothing to worry about that they knew about it and were looking into why. About an hour later we were called and told that they had discovered another hernia and that a loop of his intestines was caught in it. They corrected it with no problems, and we have since joked about him being a holey baby.

    To our great joy Adam came home 2 months and 3 days after he was born, but his story is not over. Adam came home with a g-tube, in home nursing care, an apnea monitor, and 5 therapy sessions a week trying to get him to eat and catch up to where an “normal” 2 month old should be. He was 9 months old when I happily announced to the Cherubs forum (then a Yahoo Group) that Adam took an ounce of apple juice. Within a week we were back in the hospital, Adam was having a major asthma attack. We changed his medications and he pulled through like a champ! He came home after a week in the hospital the day before his first Easter. His g-tube was removed when he was 13 months old.

    Adam had another asthma attack in October of 2007 and we decided that he needed a pulmunoligist. He had not been seeing one before because we were not told he would need one. We did a lung function test and found out that Adam has Interstial Lung Disease probably caused by scarring on his lungs. We don’t know what caused it. He was amazed that we had not been seeing a pulmunologist or a cardiologist since Adam was an ECMO survivor. He suggested we start seeing one right away and that he got an Echocardiogram
done ASAP.


    He was diagnosed with a Patent Ductus Arterosis in December of 2007. PDA is a valve in the heart that bypasses the lungs during gestation. At birth it is supposed to close, Adam’s did not. They decided to watch it, as it was not causing significant problems other than leaving him tired and winded after exerting himself. In January 2011 they decided he needed it repaired. Dr. Lucas at Oschner was his surgeon this time and he was able to repair it out patent! Adam came home that night with strict instructions for the next 2 weeks to take it
easy.

    In December 2010 we he was having trouble urinating so we brought him into the urologist where they did an ultrasound on his kidneys to find out what condition they were in. The non- functioning kidney was not found his body has broken it down and it is gone. His good kidney is healthy, slightly enlarged but that is normal considering his other one. The problem he was having was corrected outpatient later that month.

    In May 2006 we welcomed our third child! Katelyn was born completely healthy. We were so scared of having another child because of the experience with Adam. A huge blessing came from her birth, the ability to relax and enjoy being a mom for the first time. When you have your first baby you worry about every little thing. When you have your second you are a little more relaxed as you have been through all the normal stuff once, that is unless your second has huge problems! When my third came along I finally allowed myself to relax a little and settle into just being mom. I have learned that being carefree for short periods and just playing with them is a huge boost to my spirit! Take a minute and watch your kids play together and play with them! They are fun if you allow yourself to join them for a while!

    We are now in June 2011 Adam is my miracle, my blessing, and my joy. He is an active boy who loves to ride his bike, play video games, and be with his friends. I swear he has no fear. He is entering 4th grade (home schooled with his 2 sisters). This is one little boy that doesn’t stop; he is always doing something amazing. I live in wonder of him as he has faced such giants and beaten them at such a young age. I have told people he is like David, small, strong, and courageous. At almost 9 he weighs in at a whopping 43 pounds and is 3’8” tall. He is skinny as a rail but we praise God that his growth is slow and steady. His pediatrician does yearly x-rays to make sure all is well. We praise God that he has not re-hernated, which is possible with the patch they used and the size of his hernia.

    I would not change the fact that we didn’t know. If we had known we might have been a bit more prepared, we would have skipped the life flight incident, and he would have been born at Oschner instead of North Oaks. Nothing else would have changed. I was blessed in my ignorance, as I am a person who worries over everything and stresses out over nothing. In my preparations and “needing to know everything” the statistics would have had me freaked out and I would not have been able to enjoy the pregnancy and the wonder of life. My not knowing allowed me to relax instead of working myself up into needless worry and endangering my health at a critical time for my son. Instead God allowed me to be in ignorance of the blessing that was coming to me, and of the test of faith He was allowing to happen. Today I am closer to God than I ever was. He is my strength, my support, and my best friend.

~ Lisa Thibeau

Monday, November 28, 2011

Featured Child~ Axael Lyxander



Axael Lyxander was born on December 14, 2010 at 9:58 am. It was a long wait but he was finally here. When i first saw him I was surprised he wasn't crying or moving he was a funny blue purplish color. The doctor tried his best to get  him to breathe but only got a few short low yelp from him. He was quickly wisked away by the NICU team and the got to work. He's not crying I kept telling my husband. My husband just kept his hand on my shoulder looking over at the baby. He was xxrayed and that's when the found out he had CDH and more health problems the main being CDH. Congenital Diaphragmatic Hernia, What in the world is that you might ask? I asked my self the same thing. They gave me no explanation so I took to google.Thank Heaven for Google. CDH is when the diaphram fails to properly form in the early months of pregnancy, causing the organs in the lower abdomen to go into the chest preventing the lung or lungs to  properly grow. He was transferred to Texas Children's Hospital. I couldn't go with him. I was forced to stare at the pink walls in the recovery room and wonder what was going on with my baby. I kept going over the list I read on the website about CDH and what are some of the treatments. The last thing I read was ECMO. I didn't know what it was but it sounded dreadful. ECMO is an extracorporeal technique of providing both cardiac and respiratory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function  The next day we were able to be by his side. The doctors and nurse were so nice and explained just about everything I wanted to know about Axeal and his condition. Even though his night was ok it was decided he needed to go on ECMO. My heart dropped as I signed the consent forms. After a few hours he was  successfully on ECMO  and were able to see him. 




The hardest thing a mother would ever have to see is her little day old baby on such a complicated machine. On December 16, 2010, His surgeon though is was the best day to repair him. After more consent forms and hours of waiting the surgery was complete he  was stable. The surgeon found that Axeal had no diaphragm on the right side and his right lung was one sixth the size of the left lung. Axael was 5 days on ECMO. The days of the trail of was such and exciting days. Many people piled in the smallest ECMO room they had. My son, the center of all the attention. It  went well so on Monday December 20, 2011 he taken off ECMO. 






He was a true fighter. In the days after that I was able to do the thing I had wanted to do since I found out I was pregnant: HOLD AXAEL! He was kept intubated for a while and was transferred to the pod he would stay in for the rest of his stay. He was on and off CPAP a few times on and off nasal cannula. 




He was having such bad tet spells (blue spells). Crying and crying turning blue and purple right away and no one knew why. His stats would drop to the mid 20's and he would pass out and recover. In the end it was found to be his heart that was causing the problem. On March 21, 2011 Axael had open heart surgery. He had two holes repaired by the Dr. D. Morales. The surgery took hours. He came out great. After a week in the CVICU he was brought back down to the NICU, to his old spot A7. After a week he was like a new baby. No  more blue spells and just as happy as can be. A swallow study was done and he was found to have silent aspiration. Meaning anything he ate would go into his lung. A big no-no in for CDH babies. A G-button was placed on April 7,2011 and Axael was discharged April 14. 2011. Four months to the day he was Admitted. Very grateful to all the nurses we met while there all the purple pod girls and a few guys :). Especially NP Vanessa Nurse Amy and Nurse Mercy, and of course Dr. Guillory (her dedication and determination in getting Axael his heart surgery was unbelievable, FOREVER IN HER DEBT). Axael will be turning 1 this December 14, 2011. Something I can say at times I didn't think possible. He has been off oxygen since June and is only on one medication. He is on the little side but nothing time and food can't fix. He is now able to wear twelve months clothes. Heck even eighteen month and some twenty-four months clothes. He's about fifteen pounds and is twenty-seven and a half inches long. He had RSV in October. He stayed in the hospital a week and another two days in early November with a little cold. He'll always be at high risk of getting sick, but he's a fighter. 




He bounces back fast. He is sitting up, waving bye bye, shaking his head no no when people say he's so cute, wanting to crawl but not quite there yet. He's just about the happiest baby ever. He is always smiling laughing and in such a good mood 24/7. God has blessed me with a wonderful baby and a great life learning opportunity in being the mother of AXAEL. Also can't go without being grateful to my family, my husband and my four year old son Jando. Jando went thru a lot this past year also and has become the best big brother and baby brother could ask for. I love my boys!


~Amanda Morena





Wednesday, October 19, 2011

Featured Child~ Liam





Liam was born on July 14th 2011 at 10:59 pm. We were expecting a strong, healthy little boy. When Liam was born he wasn’t breathing. After forcing air into him, he let out one small cry. What I thought was the best sound in the world turned out to be the worst. Liam was born with a condition called Congenital Diaphragmatic Hernia, CDH for short. Meaning his diaphragm didn’t develop properly leaving a hole allowing his stomach, intestines and spleen to go up into the chest cavity. Because of this his heart was pushed over squashing his lungs leaving his left lung under developed. Liam’s case was what they consider mild for this type of birth defect. Babies with CDH aren’t supposed to be allowed to breathe and aren’t supposed to be bagged. They are supposed to be paralyzed and antedated until after their repair surgery. Because Liam was undiagnosed they had no idea that anything serious was wrong. Once they realized what Liam had they had to life flight him to UCSF because they were one of the few hospitals that could help him. Thankfully UCSF specializes in cases such as CDH. The staff at UCSF did everything they could to stabilize Liam. When all else failed they put him on ECMO.



ECMO is used as a last chance scenario because the chances of a baby surviving is so slim. Liam was on ECMO for about a week when he finally was well enough to be taken off. A few short days after ECMO, on July 21st Liam under went his repair surgery.



It was the best birthday gift a mother could ever receive. Not only was it my birthday but the news was awesome. Liam was very blessed. He only had part of his stomach, part of his spleen, and some of his intestines in his chest cavity. His left lung wasn’t as under developed as everyone first thought. We were blessed even more when Liam had enough muscle tissue to close up the hernia without the need of a patch. A patch is a synthetic material like rain coat material they use to patch up the hernia is there isn’t enough muscle or tissue to use. The patch does not grow as you grow so around age 5 a patch recipient will most likely have to have another surgery. Liam was very blessed in not needing a patch. He still has a chance of re-herniation but it’s slimmer than with the patch. After getting extubated, Liam was on C-PAP.



They start with the pressure setting on high and slowly wean down. The first time they excavated him, he turned blue within minutes. After being given breathes and searching for the right face mask for him they finally stabilized him. Unfortunately Liam only lasted two days on CPAP before his right lung collapsed and had to be re-antedated. After two days they excavated him again. For Liam the magic number was "six". His right lung, the good lung, would collapse. After the right lung collapsed the second time they found that his right side diaphram was high and they thought it wasn’t allowing his lung to expand properly. They were thinking he would have to have another surgery to tack the right side diaphram lower. They took x-rays and ultrasounds to find that even though the diaphram is high that it was moving properly not interfering with the lung. Just a few days later Liam’s lung was strong enough to breathe without any problems and they were able to remove the CPAP and put him on a high slow nasal canula. After very slowly lowering the nasal canula, Liam was able to be put on a regular nasal canula which he only had for 4 days. Right before his discharge they did a MRI and found that Liam has “white noise” on his brain that could possibly affect his cognitive and fine motor skills. It’s something that they have to keep an eye on. CDH kids have been known to have both progressive hearing and progression vision loss. On top of that ECMO causes both vision and hearing loss. Even though Liam passed both his vision ad hearing test doesn’t mean he won’t develop hearing and vision loss in the future and because he is both a CDH and was on ECMO his chances are even higher. There’s so much we have to watch for with Liam and God only knows the hurdles that are to come. We have to attend CDH clinics and wellness clinics up at UCSF every few months to keep track of his progress as well as see his local pediatrician on a regular basis. Thanks to the doctors and nurses at UCSF my son is a CDH survivor.

Liam had an 8 day stay at UCSF for an NG tube and additional study on his high right side diaphragm from September 29th to October 7th 2011. We were only home for 2 days before he got sick. We took him to the local Emergency room where they didn't do anything but take an xray. The next day, October 11 2011 we took him to Valley Children's Emergency room where we was admitted and currently there.



He has acid reflux and cought a cold. The cold made the acid reflux worse than normal which cause him not to be able to hold down any food. We learned on our current stay that his good lung is actually half the size of his "bad lung" and his stomach is malrotated but his bowels are normal.



Liam will have to have surgery to repair his high right side diaphram but they would like to wait as long as possible before they do. Ultimately they would like him to gain weight. He is failure to thrive and at the age of 3 months still wears newborn clothes.





~ Aubin, Liam's Mommy

http://www.wix.com/cherubliam/cdhfund

Tuesday, October 4, 2011

Featured Child~ Emery



The Story of Emery Elizabeth (a.k.a. E3)


My husband & I went in for our 18 week sonogram & took our 3 kids with us, so they could find out with us whether they would have a new brother or sister. "I have girl parts" the technician wrote on the screen – my son, and only boy, sobbed in the corner (he REALLY wanted a brother.) As the scan continued, we were told that our newest little girl had a left-sided Congenital Diaphragmatic Hernia or "CDH". Even after a very brief physical explanation of the defect, we had no idea how this diagnosis would so profoundly affect us. It almost seemed unfair that a 10, 8 & 5 year old had to go through this too.

From Womack Army Medical Center, we were referred to UNC Hospital in Chapel Hill where they would take over my care and be able to handle her much needed intensive care after birth. From there we started our journey with CDH.

Emery Elizabeth was born in October 2009 at 7 lbs 12oz and began her fight. Immediately after birth, she made an attempt to cry, but it was only a muffled squeak and was quickly intubated – that would be the last cry we would hear for a very long time. For the first few hours she seemed to be doing well, but all that would change in the overnight hours. During the night the NICU staff was having increased difficulty in controlling her pulmonary hypertension, so at 5 AM it was determined her best chance was to be put on ECMO. Within an hour, she was moved from the NICU to the PICU for the procedure. Fortunately, she was relatively stable at the time, so the transition onto ECMO was manageable. Emery stayed on ECMO for 15 days – she had 1 circuit change and 2 failed trial-off attempts before she was finally able to be successfully taken off ECMO. The following week she had her 1st surgical repair.




The surgery went well, but we were told her defect was very large. 2/3 of her back-left diaphragm wascompletely missing, she showed some indication of potential complications with reflux and her left lung was about 1/3 of normal size. A Gore-Tex patch was placed. She came back from surgery wide-eyed – thatwas the first time we saw her with both of them open – I cannot explain the flood of emotion that brought us!



Then after 37 days, Emery was taken off of the ventilator and we heard her scratchy cry for the first time since she was born. What a beautiful sound – it still brings tears to my eyes when I think about it. Emery was in the PICU for a total of 45 days before transitioning to an intermediate care unit. Unfortunately, it didn’t last and Emery was returned via Rapid Response call to the PICU where it was determined after ultrasound that she had reherniated. She had her 2nd surgical repair on Thanksgiving Day 2009. After recovering from her second repair, she was moved to “the floor” and activities were focused on getting her to eat and gain enough weight to be able to go home. She had another surgical procedure to place a g-tube and 3 days before Christmas, after 76 days in the hospital, we were finally released to go home!



Emery went home on 1 liter of oxygen & continuous pump feeding through her g-tube. She was scheduled for monthly surgical follow-ups, follow-ups with Pulmonology, referred to Child Developmental Services for Speech/Feeding & Physical Therapy evaluations. At our first surgical follow-up, her surgeon was so excited to see her, and said that (clinically) she looked great, but after a close look at her x-ray we learned that Emery had in-fact reherniated again – and had shown none of the obvious signs. This was at the same time as my husband was receiving calls that he was to deploy with his unit to Haiti to help earthquake victims. The following week, while my husband was in-route to Haiti, Emery & I were at the hospital for her 3rd repair. Her hospital stay was only 10 days this time, but because of her previous experiences it was difficult for the medial staff to manage her pain as she had a very high tolerance to the medications she was given. We had a couple minor scares, but once we made it back out of the PICU and up to the floor, we were able to successfully wean her from oxygen. So home we went with one less tube!



She continued to be monitored by her surgeon, now on a 6 month schedule & we continued our monthly visits to the Nutritionist. She “graduated” Pulmonology follow-ups and Feeding Therapy and evaluations for Physical Therapy have shown us that Emery is on-track and age-appropriate! This is truly amazing considering what she went through. This past November, Emery had a cold and ended up having a Febrile Seizure and passed out – her lips were blue and it was incredibly frightening so we went by EMS to the emergency room where they took a chest x-ray looking for lung-collapse or pneumonia. Fortunately she didn’t have any of those issues, but upon review of the x-ray with her pediatrician, we found she had reherniated AGAIN! She was taken back up to UNC, where they confirmed the defect. This 4th repair, was approached by a cross-functional team of Pediatric & Cardio-Thoracic surgeons since her reherniation was in a difficult spot – adjacent to her aorta, esophagus & spinal cord. Fortunately, it went well, even though we spent the majority of the 10 days in the PICU. We’ve had long talks with Emery that this is NOT going to
become a family Thanksgiving tradition!

While everyone hopes that this latest surgery was the last time, we remain guarded and vigilant when it comes to her care. The issue we continue to monitor most is her weight gain and caloric intake, so we can get her weaned from the g-tube. This has been a very difficult and long road, but one we hope will end soon. We recently enrolled her in daycare a couple times a week in the hopes that peer-pressure will get her eating!




CDH has been a long and rocky journey thus far, a tremendous exercise in patience and a test of faith. We cannot explain why Emery got to be here, particularly given the severity of her defect, in fact we were told long after she was “out of the woods” by her surgeon that he many of the staff in the PICU were terrified because they didn’t think she was going to make it. While that is a scary thought, I am somehow comforted in knowing what a tremendous strength she has and that she had so many people fighting the fight & praying for her.

Now, she is a very active toddler (almost 2) and by looking at her you would never know the struggles she had starting out – until she lifts her shirt to show you her “button.” Her numerous scars left over from multiple surgeries, ECMO, chest tubes & central lines serve as a constant reminder, but these battle scars are ones of courage & triumph, not of pain & struggle. For the most part, we haven’t seen CDH slow her down – my bet is this is a sign of things to come. Bring it on – I don’t believe there’s anything this kid cannot do.

-Shannon – Emery’s Mom




Sunday, September 25, 2011

Featured Child~ Allison



Allison was diagnosed with CDH at our standard 20 week ultrasound. We had the ultrasound done on December 20th, 2010. The follow up appointment was the following day, our 2 year wedding anniversary. I went in and it seemed like any other appointment. They checked my weight, took my blood pressure, and the doctor came in to chat. She asked how I have been feeling just as she always had. She then pulled out the ultrasound information for us to go over. "We found an anomaly on your ultrasound” the doctor told us. “Your little girl has a hole in her diaphragm that has allowed her stomach to move up and prevent her from having normal lung development. I can no longer be your doctor. We are referring you to a specialist for a closer look."

We starting learning lots of things that we wished we never had to know about. We had never heard of CDH before, but now we knew everything there was to know about it. We found out what a perinatalogist does, what LHR determines, where the best NICU was, what ECMO is, what NST stands for, what FISH results show, etc., etc. It was a very long and stressful pregnancy. Starting at 28 weeks, we went in twice a week for an ultrasound and non-stress test. Also, at about 28 weeks I was diagnosed with polyhydramnios. They told us that they expected that with Alli’s condition, and they had been watching for it. Unfortunately even with all the examining we were under, they had no idea how severe Allison’s condition was, or that she would show up six weeks early.

Allison was born April 7th, 2011 – almost two months too early. My water broke right as I was arriving home from work. My mom rushed over to take me to the hospital. My husband was at work and would be right behind us. The hospital Allison needed to be at was an hour’s drive. We got there and there was no stopping her arrival. We were so frightened because of how many times we had heard that Allison needed to be born full term to survive her condition and the surgery required to fix her. It was an easy labor and birth aside from all the stress. As Allison arrived, the room filled with eight or more doctors and nurses. The moment she came they whisked her off to be intubated and set up in the NICU on all sorts of tubes, wires, and machines. I had just had a baby girl, 5lbs 2oz. 18 inches long, but it would be several hours before I was allowed to see her and much longer before I could hold her.


The first five days were the longest going back and forth from “She might not make it through the night,” to “We will schedule surgery soon.” Finally on that fifth day she was stable enough for surgery. During surgery they discovered that Allison was actually missing all but a sliver of diaphragm. All of her stomach contents were in her chest and she only had a nub of lung tissue on the left side and only ½ a lung on the right. They did a Gortex patch repair, and we all crossed our fingers. It was another week before she was breathing on her own and we were able to hold her for the first time. We were so proud to have such a fighter. The machines and wires slowly started dwindling away. After six long weeks she was breathing room air and getting enough to eat on her own, so they decided that she could come home. We finally left that NICU room with a baby in arms on the day she was due to be born.


After arriving home, it was only one day before we found Allison having bloody stools. We immediately took her into her new pediatrician’s office and they diagnosed her with milk protein allergies. It is unfortunate that she has these allergies, but we were so glad to hear that it was not anything a simple diet change couldn’t fix. After trying several different diets for my breast milk and even more types of formula, we are finally starting to get Allison figured out. She now gets a medical grade hypoallergenic formula delivered in crates monthly and is on Prevacid for acid reflux. We have had our number of appointments discussing that as well. We have been told that because Allison has a different make up inside, reflux is just something that we are going to have to get through. The hope is that she can grow out of it by the time she is a year old. Until then, we will just have lots of laundry and carpet cleaning to do.


The first three months at home were filled with appointment after appointment. Her surgeon wanted to see her monthly for an x-ray, the pediatrician wanted to see her weekly for weight checks, the cardiologist needed to check up on the small holes they had found in her heart during her NICU stay, and we started seeing a GI specialist about Allison’s allergies and reflux. Now into the 4th month, we are finally down too only being scheduled for the standard well baby exam every two months. The surgeon decided at our last appointment that her repair looks perfect and that he no longer needed to see her unless we had concerns. The heart doctor told us that her heart seems to be unaffected by the holes and that she would not need to see him again until she was a year old. The GI specialist got her on the special formula and we only call him for advice about her reflux once in a while. And Allison is finally on track with her weight gain, so the Pediatrician. said we no longer had to come in for weight checks.


It has been a long journey, but we are so proud to say that Allison is doing amazing. We did have one little scare with some aspiration pneumonia a couple of weeks back, but we caught it early and it was nothing a little antibiotic didn’t clear up quickly. She is a beautiful, happy, and healthy - almost six month old baby girl, and she is meeting all of her social and physical milestones right on time and some a little early. Of course her charting goes by her adjusted age of four months, but none-the-less she has impressed everyone – all of her doctors, all of her therapists, and of course us! We will be starting her on some solid foods for her upcoming half birthday and we are so excited to start living with her the way that most parents get to with their little ones – without all the extra worry and appointments. We will be following quarantine protocols for her first winter with lots of hand washing and flu shots, but other than that she is no different from any other baby. All that’s left of her tragic start is a thin scare along her left rib cage, and bit of adorable petiteness.

~Alexis, Allison's Mommy

Wednesday, September 7, 2011

Featured Child~ Demetri Manuel


Our CDH story began at a twenty week ultrasound. To our delight we were told we were having a baby boy and then we were asked to wait for the doctor. As the doctor approached me and began to speak about this CDH thing, I felt the joy of life and pregnancy being ripped out of me. It immediately became the worst moment of my life. I remember my initial thought being, “Will the baby live?” and then, “How do I tell our family?”, and then “What if he doesn’t survive?”, and then “What if he has special needs?... I can’t handle that.”, and then the angry, “Why me! Why MY baby!”

We met with the surgeons immediately to discuss what would happen when the baby was born and tried to comprehend what exactly (right-sided) CDH meant but everything was just surreal. It was like being in a nightmare that we could not escape. I remember walking out of the hospital like a zombie staring at all the other pregnant women joyfully leaving with their ultrasound images and calling their family with news of the sex of their new baby. Their happiness made me sick. Everything made me sick.

I cried for weeks. No, months. Wait, what I am talking about, I still cry. But following the CDH diagnosis I cried non-stop for weeks. Then mommy-survival-mode kicked in and I decided that my boy and I were going to fight this CDH to our fullest ability! In the months to follow, leading up to the birth, I did a lot of meditating, researching and doctor visiting. I/baby were monitored twice a week at Johns Hopkins Hospital. I ate apples like crazy for lung strength and berries for his brain (the doctors thought this funny but I was willing to try anything!), in addition to everything else I found yummy and beneficial for baby. The baby had several echo- cardiograms as well as many follow up ultrasounds. Prior to his birth our boy had a many full teams of doctors, including many neonatologists, pulmonologists, cardiologists, many super surgeons, as well l as quite a superb handful of nurses and respiratory therapists just waiting to start their work. We toured the NICU and planned a day to get induced to avoid any possible surprises. We were excited, joyful and terrified!

Demetri Manuel Silva was born on July 19, 2010. He was immediately rushed away to the NICU without a peep as he was intubated just seconds after he was born by the team of respiratory therapists waiting next to my bed. In addition to the RTs, there were many doctors and nurses all in attendance as I pushed Demetri into this world. One of the doctors came to my bedside as Demetri was wheeled away and told me that he was doing as good as expected and that the NICU would call when they were ready for me to visit with him.




Visit Demetri is what my husband and I would have to do for the next six months. Demetri spent the first week of his life on the high-frequency vent and gases and medicines that I could list for days. He was able to be weaned to 100% O2 on a conventional vent for surgery on his 10th day of life. His PPHN or pulmonary hypertension was pretty bad going into surgery which made the doctors, even the most optimistic of them, fearful. Demetri survived his repair surgery without incident but in the days to follow he became very sick and was rushed to the PICU for possible ECMO.


ECMO, we had understood all along, was a possibility. But ECMO wasn’t just ECMO for Demetri. His anatomy turned ECMO into a very dangerous open heart procedure on a VERY sick boy. The doctors suggested that he would not likely survive, with or without ECMO.

He did! Every day after that Demetri improved little by little. And then we came to a standstill. The doctors did a Cardiac Catheter to check Demetri’s heart and decided that a leaky ASD was creating issue enough to require open-heart surgery immediately. Silly me, I was just reaching the point when I thought this CDH thing was coming to a close. Demetri rocked that ASD repair surgery and was extubated again in about a week. Then came time to get off of the massive amount of narcotics and medications!

Demetri was transferred to a smaller, more therapeutic hospital in a last attempt to work on feeding before considering a g-tube and nissen. And after pumping breast milk for months with the dream of breast feeding one day, I caved and decide that the g-tube would be best to get him home as quickly as possible. About a week later, on December 24th, 2010 Demetri came home for the first time! We were back in the hospital on December 26th for some withdrawing symptoms.

Since coming home last December, we have been back to the ER about five times and admitted twice with one scary visit back to the PICU for possible intubation. We are down from ten to about two doctors visits a month since initially coming home. Demetri’s therapists come about four times a month.


I am sure that in this small summary of Demetri’s story, I have missed a lot of what we have been through in the past year. The bottom line is that he is here today with us! We just celebrated Demetri’s first birthday!!! Today our concerns are still that stinking PPHN, coming off this tiny little bit of oxygen, and getting rid of the reflux and retching for good.


This has been the rollercoaster that everyone warned us about but our lives are rollercoaster rides with or without CDH. CDH and Demetri just made us appreciate our rollercoaster ride a LOT more.

~Nicole- Demetri's Mommy

Please visit Demetri’s Blog.
http://www.demetrisilva.blogspot.com/

Tuesday, August 30, 2011

Featured Child~ Ava Elizabeth


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


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!


_______________________________________

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.

__________________________________________________

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

Saturday, July 30, 2011

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




Monday, July 18, 2011

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