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Caring for Carter

by Karin L. Nauber

That moment when a parent first gets to hold their newborn baby is both miraculous and indescribable.

When your baby is 17 days old the first time you get to hold him, the moment takes on special meaning.

For Eric and Mindy Denny of rural Long Prairie, they know what that special moment is like.

"It was pretty awesome," said Eric, searching for the right words.

"It was a long wait," said Mindy.

Their first child, Carter, was born on May 27 at the Abbot Northwestern Hospital in Minneapolis via a cesarean section. He was born with a condition called congenital diaphragmatic hernia (CDH) and immediately required a breathing tube.

"We were able to take a couple pictures and then I followed him in a cart over to the Children's Hospital. There he was connected to a respirator immediately and later that morning to an ECMO machine. The ECMO machine pumps blood for Carter and oxygenates his blood," said Eric.

CDH means that Carter has a hole in his diaphragm between his chest cavity and abdominal cavity. Due to the diaphragmatic hernia, some of his abdominal organs such as some of his intestines and stomach are in his chest cavity pressing on his lungs and heart. This has caused his lungs to be under developed.

The Dennys found out early on at a 20-week ultrasound that Carter had problems.

"We found out what it would all mean in January," said Eric, "That was a long month."

"As far as finding out what we were up against, we looked up information on the Internet to educate ourselves," said Eric.

"Without that 20-week ultrasound, he wouldnít have been here,î"said Mindy.

That ultrasound opened up a path that the Dennys have been traveling down and will continue to travel with their infant son for quite some time.

In January they made the first of many trips to the Abbot Northwestern Hospital to determine how severe the CDH was. They also needed to determine if their unborn childís (they did not find out which sex Carter was until he was born in spite of many more ultrasounds) liver was up or down where it was supposed to be.

"It turned out it was up (in his chest) and he had a huge hole (in the heart)," said Eric.

They didn't find out just how big until the surgery was performed after Carter's birth.

Mindy went in for ultrasounds every three weeks to a month and in the last month went in every couple of weeks.

Carter's heart was pushed way to the right side because of the other organs being pushed up.

The left side CDH (where Carter's was) is more common in boys, but even at that it only occurs in about one in every 2200 live births.

"We didnít know if Carter was a boy or a girl, but because of his symptoms, we guessed he was a boy," said Mindy.

The week before Carter's anticipated arrival, Mindy stayed with Eric's aunt, Tracy Denny, who lives in Farmington so she would be closer to the hospital.

After Carter was born he was immediately intubated and put on a breathing machine. The Dennys never heard Carter cry at that time. It would be almost a month before they would hear him cry for the first time on June 25.

That was the day they removed his breathing tube.

"It brought tears to my eyes. He looks like a whole new boy," Mindy wrote on their Caring Bridge site.

Carter also suffers from a VSD, a ventricle septal defect which is a hole on the bottom of his heart and an ASD, an arterial septal defect which is a hole between the right and left ventricles.

The doctors are not able to plug the VSD hole as they were able to plug the ASD which was 8 mm in size.

"They are hoping it will close by itself. It is not hurting him now. If they do have to plug it later, they will have to do open heart surgery," said Mindy.

Another bump in the road to getting Carter home is that many babies with CDH, whose lungs are smaller than usual, breathe faster and require more calories. They burn those extra calories just breathing, so their lungs donít grow.

Carter also has a reduced number of vessels which is called pulmonary hypo plasia.

In the next six months or longer that Carter will have to spend in the hospital, the doctors are hoping and expecting several things to happen: Carterís lung growing, getting his hypertension (high blood pressure) on the right side of his heart under control (it is 3x higher than it should be).

There are also small areas in his lungs that are collapsed and they are attempting to control those with the ventilator settings. Unfortunately, because of all the ventilation he has been on, his airways are changed.

Carter also suffers from bronchial spasms.

"He becomes 'air hungry,'" said Mindy, who was holding him during one of the episodes.

It is still scary for the Dennys when he has an episode, but since he has received a tracheostomy tube, the episodes have reduced in number.

Eventually Carter will come off the ventilator and just have the tracheae tube and the feeding tube. He may have the tracheae tube for two years or more.

"It's unknown how long he will have it in. It depends how he does," said Eric.

Carter currently gets fed continuously about 40 ml an hour through the feeding tube. He gets 12 hours of formula and 12 hours of breast milk.

Part of the reason for the feeding tube is because of the ventilation. The feeding tube used to go through his nose, but now goes through with the tracheae tube.

"They told us that the majority of kids who are ventilated for a long time have an oral aversion to having things in their mouths. The feeding tube will come out last," said Mindy.

Eric works for Diversicom Telephone Company in Melrose and crop farms. Mindy works for Central Minnesota Federal Credit Union as an internal audit assistant in the Albany office.

Mindy spends around five days of the week in The Cities with Carter. She works 20 hours a week. Eric spends two days a week with Carter and Mindy.

According to the Dennys, the last few days have been good for Carter as he has been playing with his toys and smiling.

"It has been an experience. We have met a lot of people. One couple we have met have become good friends," said Mindy.

"The nurses have been wonderful. We don't ever have to worry when we are gone. We know Carter is being taken care of like he is their own," said Mindy.

"Besides she calls several times a day," said Eric.

Eric and Mindy stay at the Ronald McDonald House which is about four miles from the hospital.

"This has given us a whole new perspective on life," said Mindy.

"You learn to take one day at a time," added Eric.

"When he's doing good, we're doing good," said Mindy.

The Dennys are very appreciative of the prayers, well wishes and support they have received from family and friends and even people they do not know.

Eric is the son of Doug and Joan Denny of Clarissa.

You can keep up on Carter's progress on his Caring Bridge site at caringbridge.org/visit/babydenny.

This button is only slightly larger than the 8 mm hole that was in Carterís heart and was plugged.