After two miscarriages and a some spotting with this pregnancy, my doctor ordered several sonograms to make sure everything was OK. She assured us that when we saw a heartbeat, everything would be fine. How ironic that the very thing that was so calming initially, would bring so many tears later.
I was very sick during the first 18 weeks of my pregnancy. I lost more weight than many people gain during their entire pregnancy. My husband and I were excitedly looking forward to the sonogram at 21 weeks to find out if we were having a boy of a girl. The sonogram quickly showed that we were having a boy which I had already guessed. After the technician finished, the doctor came to check over the results. As he looked over the computer screen, he noticed something. The baby's heart was turned to the right. The tech had missed it. My husband and I were immediately concerned but the doctor said it was probably nothing. He would fax the results to my OB which we were seeing next.
Things went quite fast after that. At the OB we were scheduled for a fetal echocardiogram in several days. The OB said is was probably nothing, just that the heart was turned to the right but it would be best to get it checked out. We had the fetal echocardiogram the next week. After an hour of looking at things, we got the news. The baby was diagnosed with Double Outlet Right Ventricle (both the aorta and pulmonary artery going into the same ventricle) and pulmonary stenosis (narrowing of the pulmonary artery). The pediatric cardiologist was out of town so the perinatologist did his best to explain things. He scheduled another echocardiogram for a month later to check the progress. Jonathan and I went home in a daze. We cried for weeks. After all we had been through losing two babies and now that thought of Noah having problems with his heart. My OB suggested I change doctors so that I would be seeing a specialist and deliver at a hospital with a level three nursery. They would be able to support Noah there for awhile instead of immediately transferring him to Children's Mercy. I changed doctors for the 4th time since becoming pregnant. We had one more echocardiogram and this time the pediatric cardiologist was there to explain what our options were.
Noah Alexander was born at 5:04 p.m. He was 10 lb. 14.6 oz. and 22 inches long. His first official act was to scream and pee on everyone. The doctor commented that he sounded more like a 2 month old than a newborn. Immediately after he was born, Noah was whisked off into the corner where he had his own medical team. There was a neonatolgist, several respiratory therapists as well as nurses. They were not sure that Noah would be able to hold his own. After Noah was cleaned up, they placed him against my arm for a few minutes before taking him off to the NICU.
I spent the next 5 hours in recovery due to a bad reaction to the drugs I had been given. Jonathan floated back and forth bringing me pictures. Noah was intubated and place on prostaglandin to keep his PDA open until the surgery could be done.
The following morning, Noah was moved to Children's Mercy Hospital. There he had echocardiograms and a heart catheterization to determine how they would approach his defects. Noah's diagnosis changed to Dextracardia, a Ventricular Septal Defect, Pulmonary Artresia and Transposition of the Great Arteries due to information from the heart cath.
Noah's surgery was scheduled for July 8th at 8 days old. He was to have a BT Shunt placed centrally. Because of his unique anatomy they would have to do the procedure open heart. By doing it open heart, they actually saved Noah's life. He had difficulties during the first procedure and was placed on Nitric Oxide. Unfortunately they were unable to stabilize him and had to do a second procedure.
This all took place in 12 hours with Noah finally ending up on ECMO. ECMO is a type of bypass system that connects to the carotid artery and jugular vein. Noah spent 4 days on ECMO. He was totally paralyzed during this time and could not move or open his eyes. This was the worst part of our hospital stay.
Noah was then moved to the PICU. After 5 days, they removed the ventilator and begin to give Noah milk though a feeding tube. As the 5th day wore on, there was talk of moving to the floor. Then Noah begin to desat. Every time he desated, it would take longer to get his oxygen saturations up and they did not get as high. Eventually Noah could not sustain his saturations at all. After frantically working over him for several hours he was placed on for ECMO the second time.
Noah had difficulty coming off ECMO the second time. He could not stabilize his saturations. The doctors finally decided to do a heart cath again to see what was going on. When the put the catheter through the shunt his saturations shot up. The doctors hypothesized there was a clot in the shunt but did not see one go though. Noah was removed from ECMO after 6 days.
After 5 weeks Noah was finally stable and off the ventilator. The next three weeks were a roller coaster of trying to get off the pain medications. Noah was in major withdrawal and every step down on the medicine made him miserable. We also begin the task of taking food orally. Noah was not interested in breast feeding so we tried the bottle. The doctors were so obsessed with intake that we thought if we could get the breast milk down in a bottle, the NG (feeding) tube would be removed. Noah would only take 1/3 of an ounce at a time.
Noah was then moved to the PICU. After 5 days, they removed the ventilator and begin to give Noah milk though a feeding tube. As the 5th day wore on, there was talk of moving to the floor. Then Noah begin to desat. Every time he desated, it would take longer to get his oxygen saturations up and they did not get as high. Eventually Noah could not sustain his saturations at all. After frantically working over him for several hours he was placed on for ECMO the second time.
Noah had difficulty coming off ECMO the second time. He could not stabilize his saturations. The doctors finally decided to do a heart cath again to see what was going on. When the put the catheter through the shunt his saturations shot up. The doctors hypothesized there was a clot in the shunt but did not see one go though. Noah was removed from ECMO after 6 days.
After 5 weeks Noah was finally stable and off the ventilator. The next three weeks were a roller coaster of trying to get off the pain medications. Noah was in major withdrawal and every step down on the medicine made him miserable. We also begin the task of taking food orally. Noah was not interested in breast feeding so we tried the bottle. The doctors were so obsessed with intake that we thought if we could get the breast milk down in a bottle, the NG (feeding) tube would be removed. Noah would only take 1/3 of an ounce at a time.
Finally there was talk of going home but when they did the discharge echo something went wrong. The tech refused to talk to me and called a cardiologist. There seemed to be a kink in the shunt. Noah was scheduled for a 3rd heart catherization. We hit bottom again. There was talk of doing a third surgery. When they did the cath they found there was only a bend in the shunt. They had put in a very large shunt due to Noah's size.
We were able to go home after 53 days. Noah was still on oxygen and a feeding tube which he continued to have for another month and a half.
We were able to go home after 53 days. Noah was still on oxygen and a feeding tube which he continued to have for another month and a half.
The next few months were a blur of evaluations and doctor visits. Noah was diagnosed with Acid Reflux at 3 months and put on Zantac. Within a week he was able to take all of his feedings orally. We started occupational therapy to help him with his fine and gross motor skills.
Noah had a fourth heart catherization at 7 months in preparation for another surgery. His diagnosis changed again to Dextracardia, a Ventricular Septal Defect, an Arterial Septal Defect, Pulmonary Artresia, Ventricular Inversion and Transposition of the Great Arteries. They also felt Noah would need a pacemaker.
Noah had his Bi-directional Glenn at 10 months. It took only 4 hours and he was off the ventilator before we saw him in PICU. He was there for 24 hours. Then we were moved to the floor. By day four he was jumping up and down in my lap. We went home in 6 days.
The weeks after the surgery were amazing. Noah began crawling on all fours and getting into sitting by himself. He was able to pull to stand and cruise around on the furniture. He could even crawl up the stairs. The down side was that Noah lost most of his vocalizations. Due to this he began Speech Therapy. Physical Therapy was also begun as Noah wasn't walking at 14 months.
Noah began daycare at 14 months. He started walking at 18 months. Noah received his OT, PT and Speech services during the day at daycare.
The winter of 2000 was rough.Noah had a chronic cough that was finally diagnosed as Asthma. Another lovely addition to Noah's medical treatment. Thankfully with a consistent care plan Noah continued to thrive. It took 6 breathing treatments a day to keep his cough to a minimum.
On June 12, Noah was schedule for his extracardiac fontan and enlargement of the ASD. During surgery, Noah's blood pressure was unstable. Even though the fontan was completed successfully, Noah went back to the OR within 3 hours due to unstable pressures and bleeding. Everything appeared to be normal.
By the next morning, Noah was still having a difficult time. The surgeon felt Noah's only chance was to take-down the fontan, something he hadn't done in 7 years. Even after the take-down, Noah continued to struggle. His kidneys stopped working. Each day he slowly grew worse.
Noah Alexander Rexin went to sleep in Jesus on 6/19/01 due to complications from his 3 open heart surgeries in less than 24 hours. We were with him when he passed away. Noah was 11 days from celebrating his 2nd birthday.
We are thankful for our little miracle. Every day with him was a treasure and a joy. Noah touched many people in his short life and his story still does today. We miss him greatly and look forward to watching him grow up in heaven.
Noah Alexander Rexin
Asleep in Jesus
6/30/1999 - 6/19/2001