Featured CDHer~ Courtney

Courtney

Hi my name is Courtney I am 23 years old. I was born May 24, 1989. My mother found out about my Cdh birth defect at her 12 week ultrasound. This was a very new birth defect to doctors at the time in Springfield, Mo. I was born via c section and immediately was rushed into surgery to repair my hernia with a patch. I stayed in the nicu until mid July. My Cdh caused some my left lung to not fully develop. My mom soon realized I could not hold formula down well. When I was about 5 I started choking. My earliest memory was when I was 7 years old and choked on a piece of chicken my mom rushed me to the er and I had to be put under to get the chicken pushed through to my stomach because it was so wedged in. About the same time I started going to my Pulmonologist (lung doctor) to have breathing treatments done, and they referred my mother to a Gastro doctor at the children's hospital in st.Louis,Mo because I was choking every time I ate. At the time in Springfield they did not have a children's doctor for this. We made the 3 hour trip when I was 8 years old and I had my first scope done. We found out that my esophagus was 5mm around and it was supposed to be 30mm around. They immediately stretched it with a balloon. I had to go back every 6 months they stretched it every year. I then found out o have gastroenteritis reflux disease. I started off on Prevacid one a day but I was having so much acid they kept raising the dose. They monitored me once and I had over 200 separate episodes of acid in one night. In school I had a inhaler for gym because I could not run long because of my lung capacity. By the time I was 20 I was on 6 Prilosec a day for my acid reflux. At 21 I got pregnant with my daughter I quickly found out 6 pills a day was against the federal recommended dose so they lowered me to 3 a day and they said that was safe for pregnancy. That was my only issue through pregnancy was my acid. I was so worried something was going to be wrong but I am happy to report that I had a healthy pregnancy and I now have a healthy 2 year old. I no longer have to go to my lung doctor, I just don't run for a long distance. I do see a gastroenteritis adult doc now and I had my last stretching a year ago and they said everything is looking wonderful. I only go back if I start choking again which will result in stretching. My esphogus is 25 mm around now and I can eat anything I want. There were times in life that I got very down and was very ashamed of my scar but I am finally accepting that it is my story and I am not ashamed. I never take a day for granted and am so happy to be here. I just want to give everyone some hope for their children. My mom will cry at the drop of a hat when it comes to my health so I definitely see the pain it causes but I just remind my mom I'm okay and I'm still here and so thankful. Just never lose hope.

(Here is Courtney and her daughter.)

~Courtney Boyce

Featured Child~ Andy

 

I found out we were expecting our fourth child in January 2011 at about two weeks. Due to my history, the doctor wanted to see me ASAP. I went in at six weeks along. Everything looked great. Then around eight weeks I became very sick I was in and out of hospital for IV fluids and medicines.

At twelve weeks along, on a Wednesday I had a home nurse come out to show me how to use the Zofran pump. (For those that don't know this is a slow steady flow of medicine running all the time to help with the sickness.) I had lost 20lbs. A small needle was put through my tummy that delivered the medicine.

The next day I was at work. I worked with preschool kids at my church. I thought I had peed myself as it tends to happen in pregnant women. But little did I know what was about to happen. I had started bleeding everywhere. I was rushed via ambulance to the nearest hospital. I thought I was losing the baby. The doctor wasn't sure if the baby would make it let alone myself. I was diagnosed with Subchorinic Hematoma (SCH).

I was followed very closely until my thirty week point by my OB and a specialist. I had two blood clots in my uterus along side of the baby. They cleared up at twenty-eight weeks. I was told all was good the baby was large and growing fine I came off bed rest around thirty-two weeks when I had the finally all clear and my baby boy was doing good. So our fear of premature birth was gone. No nicu stay was going to happen.

We were all good right there right up until inducement day. My husband and I had this really bad feeling. My thoughts were... I don't want to have this baby. Something is wrong. We got to the hospital at 7:00 and he was here at 10:28am weighing 10lbs 4 ounces and 22 inches long. He was blue and not breathing.

No one would tell me what was wrong. They all turned from me and were crying. I had been given the chance to hold him but said no cause I figured I'd get to hold him after he was cleaned up like I did with my others. We didn't know he was sick.

They took him out in the incubator. They tubed him and came in and told me he had aspirated. I was ok with that. I knew what that was and it would just be a couple days in nicu. Then came the bad news, the doctor said "I have some upsetting news, Your baby has congenital diaphragmatic hernia." I said, Do what!!" And then he explained that he had a hole in his diaphragm and his organs weren't in the right spot.

His hospital keep getting changed due to them not having the right equipment like the ECMO. We finally had a hospital for him to go to. The place I delivered didn't even have a nursery for babies. He was transported by the angel team that evening by the time they got there had him all hooked up and sedated. They told me to say my good byes because they didn't know if he would make the transfer or thru the night. I couldn't go because I had just delivered a baby. I told my doctor I wanted out first thing in morning and I was. With a cracked tailbone I made my way down to Children's hospital, a an 2 hours drive away.

Andy was on a vent that was breathing for him and on a lot of pain medicines.

Things are hard to recall everything as I was in shock, mad, upset and in a lot of pain both mentally and physically. I didn't understand why I was told everything was finally ok and it wasn't. From what all I can remember he only had his intestine in his chest he had a 30% hole they said he has stitches mess and the Gortex patch. He had pulmonary hypertension.  He was born on a Monday had his repair on Friday. It took couple hours at least 5 hours cause I had to pump twice why waiting. I was so worried about going to pump in case the call came in and something happened.

All went well he had it done laparoscopically. He has about a three inches scar on his back and a couple small holes under his arm by his shoulder, where he had a chest tube. He had fluid in his lungs it was a nasty color when it drained out. We were told he would come home until Christmas then it was Thanksgiving it just keep going back and forth.

We still had three other boys to take care of and tell them what was going on it was very hard they didn't get to see their baby brother until he was almost a week old after surgery.

We were scared that he wasn't going to make it. He develop some kind if infection so they gave him high dose of antibiotics.

It was a roller coast. His vent would be turned down and he would be doing good. We would get home and call to check on him and he wasn't doing good and had to turn the ventilator back up. I finally got to hold him at nine days old. The next day he came off the ventilator.

Then came the feeds, he wouldn't eat for the nurses but would for me I wasn't allowed to stay with him at night so during the daytime he would take a bottle and at night would be feeding tube.

He was still having trouble with his breathing and heart rate going up when he would eat. After two weeks of feeds and finally gaining weight, they allowed him to breastfeed and he had a hard time with it. He couldn't breath so it was back to the bottle which at that time I didn't care I just wanted him to eat and come home.

Two weeks old they moved him to another room where I could stay with him. He came home right at a month old. He needed no oxygen! He did need reflux medicine and had to sleep upright cause of reflux and sometimes he would stop breathing if laying flat. He develop another hernia which they are watching now closely. He's one and is into everything. We still have problems with him not wanting to eat or choking on his bottles. He has immature swallowing food allergies and they keep finding more things wrong as he grows. He's a happy sweet loving little boy.

~Amber Parker (Andy's Mom)

Featured CDHer~ James

My CDH warrior,James was diagnosed with a LCDH at an 18 wk ultrasound when the technician noticed that his heart was pushed over a little to the right side. In 1992 there was no internet to turn to to find out information. Our only resource was the local library. Needless to say there was not much information and what there was was very technical and scared us to death. We were living in a small town in Texas at the time and my OB said that we wouldn't be able to deliver our son in the local hospital that we would have to go to Dallas to deliver him. We were given I referral to a high risk ob in Dallas. That first ob suggested that the best option would be to terminate the pregnancy. We told him that that was NOT an option for us. We found another ob who was wonderful and never once mentioned terminating our son. He arrived in the world at 4:15pm on June 10,1992. 

They immediately intubated him in the delivery room and rushed him to the NICU. I got a quick glimpse of his beautiful face as they rushed him by me. Not long after, they brought me consent forms to sign for them to do whatever was necessary to save his life. At approximately 8pm that night his organs began to fail and if it weren't for ECMO he would have died that night. The surgeon did his repair the next day. He came off of ECMO after only three days (the shortest amount of time up to that point for a CDHer). The neonatologist showed me an x-ray of his lungs and told me miraculously his left lung just opened up and he was able to be removed from ECMO. He remained on a ventilator for 17 days, then cpap, then just the nose canula.

He was breathing room air before long and after eight weeks was discharged and able to come home with us.

He did not need any oxygen support or monitors or even a feeding tube for when he came home. All of this was new and terrifying for us because we had 2 healthy girls at home.

James had feeding issues and massive reflux and needed a Nissen fundoplication when he was three. 

He had respiratory issues and was hospitalized a few times with pneumonia and RSV. He needed another Nissen when he was ten due to going through a growth spurt and his first Nissen coming undone.

He has a slight learning disability but graduated high school with a regular diploma.

He has fought and worked very hard and I am so proud to be his mom!


~Elizabeth Randazza

Featured Child~ Benjamin

Benjamin Adam Walker was born October 2007 after an uneventful pregnancy, by planned c-section at thirty-eight weeks due to him being breech. Full term he weighed 3 lbs 11 oz and was in respiratory distress. Since it was a planned C-section there was a NICU nurse there who got him quickly to the NICU and on a ventilator.

Within an hour we were told his diagnosis. Left sided Congenital Diaphragmatic Hernia. We had never even heard the term before, and now our son was born with it. His liver was the only organ that was not in his chest. He struggled to breathe, as the Drs struggled to stabilize him, his blood gases were very high, over double what would be considered safe to operate. When he was 36 hours old, we were told that there was no more they could do at this hospital and he needed to be flown to CHoP where they had an ECMO machine, and that would help stabilize him and give him a chance to have the surgery. There was a bed available for him, and they were arranging for the helicopter to come and get him. We live about an hour and a half from Philadelphia, so we began making arrangements to get me checked out of the hospital and get ready to go.

Ben had other plans. They had to take one last blood gas to give the flight team the most current numbers. Those numbers came back almost half of what they had been, and the surgeon felt confident he would be better off staying where he was and having his repair surgery there. So we stayed.

The next day, he had the surgery and we were cautioned that he was not out of the woods, and that he still had a long road ahead. In the NICU he needed 3 blood transfusions, dozens of x-rays, 2 weeks on a vent, 2 weeks on cpap, a week with a nasal canula, IV feeding, NG tube, a chest tube, MRI’s and countless other tests and procedures. We were able to hold him at 12 days old, and we did as often as we could.

He struggled, but made good progress, and was eating out of a bottle by 5 weeks old. He spent 6 weeks in the NICU and went home on only an apnea monitor, and a calendar full of Dr appts. His left lung did not form correctly and he had a difficult time fighting germs, so his first year he had limited contact with other people. He needed to be followed by a pulmonologist, optamologist, his surgeon, a neurologist, a cardiologist and of course his pediatrician.

For the first 10 months he did fairly well, though he remained small and growing slowly. By 10 months he had completely fallen off of his growth curve, and we started seeing a Pedi GI. By 13 months, he was diagnosed Failure to Thrive (a diagnosis that just about crushed me), severe food allergies, Reflux, and Eosinophilic Eoshphagitis. He was placed on an elimination diet in which he was only allowed 4 foods. Chicken, sweet potato, prunes, and barley. Elecare was and is his main source of nutrition. He had a difficult time feeding and vomited upwards of 12 times a day, everyday. By the he was 19 months old he was admitted for placement of an NG tube, and he had that for 5 months. He began to grow, and he even started to get hair! He however, still was vomiting all the time and could not eat anything beyond Elecare.

We saw several GI drs, and they all said the same thing. He has allergies, EE, and Reflux. The vomiting is fine. They prescribed zantac over and over. It didn’t help and I stopped filling the rx. At 2 ½ he was admitted for placement of a G-tube, repair of an umbillical hernia as well as surgery to move his testicles down, as they were too high.

Within a day of the surgery he got very sick. He had a thick tube placed in his nose and down his throat, and that and the G-tube were used to drain green billious from him constantly. After 2 days of him getting sicker, he had a bowel test and it showed a complete intestinal block. It was 10pm by the time we got the results and the surgeon said the surgery had to be done NOW, so he went into Emergency surgery late that night.

We were warned just how serious it was and he may lose part or all of his intestines. The surgeon that performed the surgery was the same that did his orginal CDH repair. The block was from his intestines adhering to his synthetic diaphragm and slowly cutting it off. The surgeon said the biggest indicator we would have had to a problem was he would have had intense constant vomiting.

HE DID. I TOLD EVERYBODY. NOBODY LISTENED.

He suffered for a year and a half, he almost lost his intestines and he almost died because every doctor we saw was quick to say he vomits because he had reflux.

After that surgery he did well for a few days, but then again became very sick. His incision was red and swollen and obviously infected. By this time his surgeon had left the country on a mission trip and there was no covering pediatric surgeon. The only other in the county was at a hospital about 10 miles away, so after 10 days in the first hospital he was transferred by ambulance.

He needed ANOTHER surgery to open the incision, clean it, pack it and get antibiotics in. He was in that hospital for another 3 weeks, and was put under daily for the first week, and every other day after that to clean the wound and repack it. He spent all of that time on round the clock antibiotics to get the infection under control.

The would was left open to heal and we cleaned it at home and kept it covered, and him away from other people again for another 2 months so he could recover at home. It took 3 full months for his body to heal from that ordeal on the outside and much longer for him to get past it, though I think he will always carry part of that trauma with him. To this day I can not take him to the dr without giving him a complete run down of what is going to happen, why we are going, and what we are going to talk about.

Today he is a relatively healthy 4 ½ year old who keeps us laughing, keeps us busy and makes us grateful for everyday we get. He still suffers from food allergies and EE, so there are not many foods he can have, and he will likely always depend on Elecare to thrive, but he is THRIVING. He is now on the growth charts (at the bottom, but on there!) He needs 2 to 4 breathing treatments a day, is on several medications for the EE, reflux and seasonal allergies and is G-tube fed at night to help him get the calories he can’t take by mouth. He drinks the Elecare well but simply can not get enough in by mouth to grow.

His lungs are still fragile, and it takes him weeks to get over a “simple cold”. Some days are great Some days are incredibly hard, and we live with the constant fear that his patch could break, but we pray daily it does not happen.

~Katherine Walker

Featured Child- Elijah

Elijah

Featured Child~ Sydney

Sydney’s Story

I was 34 when my husband and I decided to have another child. We already had a 12 year old son, a 9 year old son and a 9 year old daughter. After about 2 months of trying I found out I was pregnant. We were so excited and the pregnancy was just so perfect. At 19 weeks pregnant my OB sent me to another hospital that had a level 2 ultrasound because of my age. We found out that we were having a baby girl, which would round out our family very nicely. After several minutes the ultrasound tech went to get the doctor. After several minutes the doctor told us that our daughter had Congenital Diaphragmatic Hernia. He quickly explained what it was and in the same breath told us that it was going to be a very long road and since we had three healthy children we should “bail out”. We decided to have an amino then and there. As we were leaving the doctor told us that Children’s Hospital of Philadelphia (CHOP) would be the only hospital in the area that could help her.

I called CHOP as soon as I got home and made an appointment for the following week. During that week I did nothing but surf the internet for anything on CDH. I read many blogs and medical journals. Most of the information that I read was horrifying! After spending six hours at CHOP having a fetal MRI, Echo, and extensive ultrasound we met with an OB and a general Surgeon, DR. Flake. We were told that our baby had a RCDH and it looked as if most of her organs were in the chest. The said that her HLR was .62. I knew from all of my research that anything under 1.0 was not good at all. Dr. Flake told us that she had at best a 10% chance of survival. We asked what her quality of life would be if she survived and what they would do if this was their child. Of course they could not answer, but they did say that we still had a small window of time if we decided to terminate. On the way home, my husband asked what I wanted to do. I just could not make that decision. Gary said “If God wants her, then let him take her”. This was the start of our incredible journey.

Sydney was born on Nov 5, 2008 at 36 weeks via C-section due to my high blood pressure. Six hours after birth she was placed on ECMO.  We were told on a daily basis that they did not know if she was going to make it. At 9 days old they decided that it was time to do the repair.

Sydney was missing the right side of her diaphragm. Her liver, stomach, intestines and gallbladder were in the right chest. Her heart was pushed to the far left wall of her chest. The right lung was about 20% the size and the left was about 75%. Because of the way the liver developed, it would not fit in its proper place and needed to be manipulated and turned to fit on the left side. Her intestines were not able to fit so she had a silo for 12 days. We were told after surgery that they did not know if the bleeding would stop due to all of the manipulation that the liver had endured. We held our breath as they placed the drains in to see if it was clear or blood. Thankfully it was clear.

At 19 days old Sydney had to come off of ECMO due to a grade 2 brain bleed. When they trailed off the day before she did not do well at all. When we walked into her pod, they had placed the homemade keepsake blanket on her warmer and asked if we would like to “hold” her since we were not able to before. Everyone was convinced that she was going to pass away that day. They Dec annulated and she did amazing. At six weeks we were first able to hold her and at 7 weeks (Christmas Eve) they extubated her and put her on 4 liters high flow nasal cannulas. That was such a wonderful day, our three oldest were able to hold her for the first time. Two weeks later she had to be vented again. She was not able to get rid of the carbon dioxide. Again two weeks later she was put back on high flow nasal cannulas with 5 liters oxygen. She had a very hard time with weaning of the meds while on the oxygen. She was miserable; no one wanted to care for her. All she wanted was for her mommy to hold her.

In March, at four months they decided to do a Nissan because they felt that she was micro aspirating. A month later they decided that the only way that Sydney would be able to do anything besides breath, she would need a trach and vented. When they told me this, I thought it was the end. After two weeks of recovery, Sydney was a different child. We never realized how difficult it was for her to breathe until she was vented.

She soon began sitting up, playing, smiling. She was the baby that god intended her to be. Before we could leave CHOP Gary and I had extensive training in changing trachs, troubleshooting the vent, and suctioning.

We left CHOP NICU after 224 days. She had a trach, was vented for 24 hours a day. She had a G-Tube and received all feeds through it. She was on Viagra for pulmonary Hypertension, Diuril, Potassium, and Bethanical (for reflux), and dual hearing aids.  When we came home she had 16 hours of nursing a day, was receiving PT, Speech, and seeing a teacher of the deaf. Three months after coming home (Syd was 9 months) the docs started to sprint her off the vent. In October of 2010 she came off the vent completely. They took out the track in April of 2011; two years from the time they put it in. We were told that she would probably have the trach for at least 3 years.

Sydney is doing amazing. Her lungs are both growing and functioning well. The right lung will most likely never be full size but she is doing very well with the one lung. She is off all meds except for Xopenex when she has a cold. We still have the G-tube, but she eats!! We still get feeds overnight due to her being only 6% on the growth chart. We are considering weaning off the night feeds this month.

We were told that Sydney would have many delays due to the severity of the brain bleed. When she turned 3 she was tested by the early intervention. She scored right on target for her cognitive, above age level for speech (were told she would not talk) on target for fine motor. Sydney has a slight delay in her gross motor. They feel most of it is caused by fear. Oh and her hearing loss is so mild now that she does not need the aids. She started pre-k this November and loves it. Sydney is truly an amazing little girl that has an amazing will. She knows what she wants and will not stop until she gets it. I am eternally grateful for the nurses, doctors and staff at CHOP and for the entire answered prayers and miracles god has given us.

~Kathy Taborelli- Sydney’s Mommy

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