Summer in Fall

In Arizona it’s hard to believe Fall has started. Temperatures still top the high 90’s, and sometimes 100’s. Fortunately, the evenings and mornings are cooler. Aidyn has done very well keeping hydrated during the summer. I think what has been helpful is that I have weaned Aidyn off the antibiotics for bacterial overgrowth. It always gave him runny/watery stools the first half of the week long antibiotic cycle. This is how I weaned him: In June, I started to space out the antibiotics by adding a week to the time Aidyn had off of Flagyl (initially only one week). By August he was able to go three weeks off the Flagyl. He’s currently on his fourth week off. 

First ice cream!

Two weeks ago I started adding ¼ teaspoon of baking soda to every 20 oz of water Aidyn drinks. Any extra gas build up he usually got seemed to disappear. Aidyn now consistently has soft-formed stools. They are smelly, but without tons of gas and liquid. I find if I give a drop of oil of oregano for a couple days, it will kill the bacteria that the probiotics missed and the smell will lessen.

Big Boy bed!!

Aidyn received his first dose of B12 shots the beginning of September. He will continue to get them, with labs done every three months. His weight was checked and I was surprised Aidyn didn't gain weight. He has been hanging around 26 ½ lbs since the beginning of summer. I am hoping Aidyn will have gained some weight by Friday, the next GI appointment.

Much needed haircut done by Mama.

I have some exciting news! Aidyn has started Preschool! He goes half a day, four days a week. It has been over six weeks and it is going smoothly. He did catch a cold three weeks into school, but he recovered quickly. His speech has improved and it is probably the combination of Speech Therapy at school, his peers and just plain time. So far there have been no potty accidents at school. He has good control of his bowels and is pretty regular. Despite that, potty training is very slow. He just doesn't want to take the time to go to the bathroom. I am hoping by the time he is four he will be potty trained AND off the bottle. Drinking Elecare formula out of anything else just won’t do. I shouldn't complain because at least he will still drink it and he has no feeding tubes.

Ready for school.

Finger paint!

Recap on Aidyn: He has only 5 – 10% of his small intestines left, no ileocecal valve, no appendix and 50 – 75% of large intestines left as a result of NEC. He has been off TPN/Omegaven( IV nutrition) for 21 months and drinks Elecare for half his calories. He eats what he can tolerate which is most meats, gluten-free starches and is limited to carrots, apples, tomatoes, and strawberries for fruits/veggies. He is allergic to wheat, cow’s milk, beef and bananas. Each day he drinks about 24 oz of Elecare at 36 cal/oz and another 20 – 24 oz of water with electrolytes and sodium bicarbonate. Along with liquid vitamins, he takes 16000 units of Vitamin D3, 2800 mg of fish oil (when I remember), almost half a sachet of VSL#3, and Ursodiol every day. I give oil of oregano as needed. He recently weaned off Flagyl. He has 2 -3 bowel movements a day, soft formed. That’s it!

I always pray for the miracle that he wakes up one day with everything intact inside. That’s the kind of faith I have and it has gotten me through it all.

Catching up, April and May

Apologies for not updating. Life has been extremely busy. We must catch up on what has happened in April and May. Let me rewind a bit. I forgot to mention that during the week of Aidyn’s surgery recovery, we requested he get an ultrasound to rule out problems in his brain. The doctors felt he probably didn’t have any major brain injury issues, but still ordered the ultrasound. The results were good, no apparent damage such as bleeding or lack of oxygen. Around the 27th of April, Aidyn had an echocardiogram done to see if there was a possibility Aidyn had a clot from his heart that could have contributed to possible circulation issues of the small intestine. It could help in determining why Aidyn got NEC. Well, a small clot was found in his superior vena cava. But, since his blood flow was very good around his heart, the doctor’s ruled out a problem there. The neonatal doctor’s suggested treating the clot with medication, but the cardiologist said that since the clot was small, there was no need to treat it. Another echocardiogram was done about four days later, but it had grown a little. This time Aidyn was given Lovenox, a blood thinner. We were told he would be on it at least three to four weeks. Aidyn also received an ultrasound of his abdomen to be sure there were no other clotted areas. There wasn’t. So, the NEC has no known trigger.


On May 1st, we met with the transplant doctor and the coordinator of University Medical Center from Tucson. It was discussed that Aidyn would have to be 20 – 22 pounds and stable before he could have the intestine and liver transplant. He would probably be 1 to 1 ½ years old when he was given the transplant. It seemed so long. The transplant coordinator had bad news. Our insurance doesn’t cover small bowel transplant. We were shocked. They said they could appeal the insurance company, but would have to wait until Aidyn was closer to getting the transplant. That put a damper on the weekend. There had to be another way, I thought. I remembered the morning of the consult, talking with a kind lady while we waited for our transplant consults. She mentioned that a woman at UCLA was allowed to use an alternative lipid for use with the TPN, but it came from Europe somewhere. During the weekend I began to search for an alternative to the TPN. I found Omegaven.

Aidyn's Beginning

After a night of contractions and some bleeding on Easter night, I went to the hospital. It was 3:30 a.m., on April 13th, 2009. I was admitted to the hospital because I was steadily having contractions and 4 cm dilated. I was given Magnesium Sulfate to stop the contractions, a steroid shot in case Aidyn’s lungs were not fully formed and had an Amniocentesis to rule out an infection in my amniotic fluid. The nurse was scheduled to give me another steroid shot the next morning, but we learned from the Amniocentesis results that Aidyn’s lungs had fully formed. Also, there was no infection. So, no one could figure out why I had preterm labor. By now, around 9:00 a.m., I was between 7 – 8 cm dilated; my obstetrician said I would be having Aidyn later in the day. I handled my labor extremely well, so well, the nurse had a hard time knowing how close I was to giving birth. I decided on not using any medication (which I later wished I had when the doctor gave me pitocin). Aidyn was born at 6:03 p.m. on April 14th. His Apgar scores were very good, 8 and 9. I was surprised he did not need any assistance. Aidyn progressed well each day with his bottle feeds. No more IV at almost day 3.

On the night he turned 3 days old, Aidyn took an unexpected turn. On Saturday, at 3:54 a.m., the doctor called saying Aidyn had blood in his stool and was being put on antibiotics. Then, at 5:49 a.m., we were called again. This time he was being put on a ventilator because he had apnea three times. We headed to the hospital with fear. When we arrived, our hearts sank when we saw Aidyn with a breathing tube in his mouth, another tube to collect fluid and gas from his stomach, leads and IV’s in his little limbs. His stomach was distended and getting hard. The veins were very prominent on his abdomen. H e was listless. The doctor showed us an x-ray of Aidyn’s abdomen, showing us the infection of his intestine. We hoped the antibiotics would work and he’d get to eat again after a week. Hours passed and Aidyn’s stomach looked bad. It appeared he developed a bruise on his abdomen, but it was worse, his intestines perforated. He would have to go into surgery. The surgeon presumed Aidyn had necrotizing enterocolitis (NEC). She didn’t know what she would find, hopefully little damage. Aidyn was scheduled for surgery at 1:00 p.m.

After about 2 hours, the surgeon came to us. She didn’t look optimistic. There was devastating news. She told us Aidyn did have NEC and she had to remove most of Aidyn’s small intestine, leaving only about 18 – 20 cm left (there’s about 220 cm in a baby). She painted a grim picture for us, he could die peacefully or he could get a small bowel transplant. With the small bowel transplant, he would also need a liver transplant since it would fail from being on the TPN for a long period of time, up to a year or more. She talked about what a rough road it would be to opt for the transplant; it was hard on families and had seen it break up relationships. It was the worse day we ever had. We grieved for a few days, there was a choice we had to make, let Aidyn go or fight for him. We didn’t want him in anymore pain, yet we couldn’t just let him go. The surgeon left Aidyn’s wound open so she could explore and clean out his abdomen a couple days later. A day after surgery, Aidyn had a Broviac put in for his TPN.

Five days old. Not knowing Aidyn's fate, Alyssa visits Aidyn for the first time, after child visitor restrictions have been lifted in the NICU.

Aidyn had developed a rash on his left side a day after the surgeon was supposed to do the second surgery, (she was too tired the previous day to do the surgery). Aidyn was back in surgery on Tuesday at 12:30 p.m. The surgeon found more damage. She removed a little more small bowel, his ileum and less than one forth of his big colon. His prognosis was the same.

Despite Aidyn's condition, we decided to take the more difficult road and give our son a chance. He has overcome more than we could ever imagine for ourselves. Aidyn gives us strength everyday. We love him.