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
