At 9 days old, Delilah was having a lot of desaturation in her oxygen and was bradying. I remember like if it was yesterday how that night started. I just knew she wasn't herself and something was going on. Dr. Perez was on call that night and he ordered a chest x-ray to see how her lungs were. Apparently the x-ray looked fine, but I just had a feeling that something was going on. Dr. Perez blamed her actions to her prematurity and left it at that. A few days before a nurse had called me because her belly was a bit swollen and she was having some residuals. They were apparently not too concerned because her belly was not hard and her feeding residuals could be because she was still very small. Rewinding for a minute... my babies were being treated for heart murmurs cause by an open ductus in the heart called a PDA. They were given IB profin as a non-invasive treatment for those murmurs. Apparently, there is a study that treating premature babies with IB profin causes a condition called NEC in babies.
What is NEC? A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel. Although it affects only one in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants.NEC typically occurs within the first 2 weeks of life, usually after milk feeding has begun (at first, feedings are usually given through a tube that goes directly to the baby's stomach). About 10% of babies weighing less than 1,500 grams (3 lbs., 5 oz.) experience NEC. These premature infants have immature bowels, which are sensitive to changes in blood flow and prone to infection. They may have difficulty with blood and oxygen circulation and digestion, which increases their chances of developing NEC.
Well, now that you have a bit of information about NEC, I will continue her story. The morning of Delilah's 10th day, another Dr. saw her x-ray. Apparently in her chest x-ray there was a part of her belly in the picture. Well the part of her belly showed that she had perforated in her intestines. Immediately she was sent to surgery. The surgeons told me that my daughter would not make it passed the surgery. Well back to the IB profin.... She was 24 hours post her last IB profin dose. Dr. Alexander (their secondary doctor) told me that if it was up to him, he would not give her the IB profin and then explained to me about the study of iB profin associated with NEC. He told me that it usually happened 24-48 hours after the last dose. Well guess what? This all happened 24 hours after her last dose. Coincidence or not... it still today plays with my mind.
Anyway, after almost losing my mind and begging God to not take my baby girl, the surgery is done and the surgeon comes to talk to us. He had good news! Delilah was okay and he barely had to take any of her intestines out. He told me that she would have to make it passed the next 24-48 hours and she should be okay. Well at the 48 hour mark, Delilah was not doing well. She was retaining fluids and not urinating. Her kidneys began to shut down and her blood flow started to decrease. She was placed on the high frequency ventilator again and she was very ill. The doctor called me and told me to come be with her because she was probably not going to make it. When I arrived, the doctors were doing their rounds... I remember they came into the room and told me how sorry they were and that they did everything they could. I did not believe those words in my heart.. I just knew my daughter was going to make it!!! After blood pressure medications being max out, high frequency giving her 900 breaths per minute, and receiving plasma and blood transfusions.... and lots and lots of prayer and faith... Delilah responded... and 24 hours later she was off the high frequency and they had to give her more fluids because she had urinated so much that she was a bit dehydrated.
My daughter is my super hero! :) I love her so much!! Truly a strong baby girl defying the odds!
My 24 weeker also had NEC just after taking ibprofen to close the ductus. She also had surgery to remove the perforated intestine and now has a stoma with a bag on the side. She ended up having the surgery to close the ductus too. She'll be 8 weeks old this week, and is still in an incubator. As soon as she is big enough, she'll have her intestines put back together.
ReplyDeleteYour children are lovely, I've had a nice time reading about them!
Sarah