My sweet son Jay was born on September 24th at 11:34 PM. I knew surgery on his intestine would be our first hurdle. Duodenal atresia is a closure or kink in the intestine also known as the double bubble. Duodenal atresia occurs in about 10% of children with Down syndrome. Surgery would entail cutting out the blocked part of the intestine and sewing the intestine back together.
Jay was 12 hours old when he went in for surgery. The surgeon informed us the sonogram only is able to show there is a blockage but it does not show how many. He said if all goes well and there is only one blockage then the surgery should only take an hour. There was a whole team prepping my son for the surgery and the room was in chaos. I just remember the experience was a blur and I was still recovering from giving birth and on pain medication.
An hour later we got the phone call Jay was out of surgery. Thank goodness he only had one blockage. When he returned from surgery he had a suction tube down his throat to suction out the bile. His intestines needed to heal and he would not be able to eat until he had his first bowel movement. During surgery they also placed a broviak in his leg which would allow for him to receive nutrition called TPN. The broviak also allows for blood draws so he would not need to be poked all over the place.
Jay was put on two antibiotics to prevent infection at the surgical sight. After three days he was taken off the antibiotics. A few days later the sight started looking infected so they put him back on the antibiotics. A week after the surgery he had his first bowel movement so that meant we could start breastfeeding and wean him off TPN.
Usually children with down syndrome have a problem latching on and breastfeeding but Jay latched right on and breastfed for 10 minutes. The next feeding he fed for 20 minutes. He was doing great! The next morning when I got to the hospital I was informed the Doctors decided they wanted him to bottle feed the next couple of days because they needed to know exactly how much milk he was getting. The next couple of days he exclusively bottle fed and they gradually increased the volume of breast milk he was getting each feeding.
After a couple of days he was allowed to breastfeed again and he picked up where he left off. He was great at breastfeeding. He was on a schedule where he had to feed every 3 hours. When I was not at the hospital he was bottle fed. They wanted him to finish 55 ml from the bottle within a half an hour otherwise he would be burning too many calories working to feed. It was taking him 50 minutes to bottle feed so they wanted to put an NG feeding tube in him. This tube would go down his nose into his stomach. They would let him feed for a half an hour and whatever he did not finish they would put in the tube.
He had the tube for about 1 week and was gaining weight but he no longer had any interest in breastfeeding anymore. He would latch on but would not suckle, or he pierced his lips shut so I couldnot get my nipple in his mouth. Having the tube had caused him to get lazy with his feeds and I'm sure having a tube running down the back of your throat would not make feeding very comfortable.
At four weeks since the surgery the surgical sight was scabbed over and healing nicely. Jay was drinking 55 ml's. It seemed like he would take about 20 ml from the bottle and the rest went in the NG tube. They also started fortifying my breast milk with formula to boost his caloric intake to help him gain weight. Jay continued to backslide and by the time he was able to leave the NICU at 11 weeks of age he was not taking anything from the bottle or breast. He was completely dependent on the NG tube. I later found out the nipples on the bottle were faulty and every baby was taking a long time to feed. Jay soon had an oral aversion and would not allow anything near his mouth. He had the NG tube for 9 months and then a G-tube was surgically put in. He has had years of feeding therapy and will eat orally but still will not take liquids orally at the age of five.
I think back to if those nipples would not have been faulty and he would have fed from the breast and bottle within 30 minutes how much time, heartache and therapy it would have saved us. Jay would have been a wonderful breastfeeder and oral eater. You really need to use those muscles to learn to speak and I really feel those faulty nipples caused us so many long term problems.
