But he's doing well for a guy whose birth weight was less than the weight of two cubes of butter.
Doctors gave Jackson Knox about a 50 percent chance of survival in mid-September, when he was rushed into the world three months early. "He has beat the odds at every step," his father, John Knox, 47, said with pride.
Jackson is a HELLP syndrome baby.
When his mother, Rebecca, gained 90 pounds during her pregnancy - with 20 of those pounds gained in the last two weeks - she suspected something was wrong. A doctor told her to stop eating so much and her husband blamed her weight on his own penchant for keeping ice cream in the house.
She must be really gulping the ice cream, he thought.
That's one of the puzzling things about the syndrome.
It's sometimes misdiagnosed and nobody really knows what causes HELLP in the first place. This potentially life-threatening disease happens in one per 150 live births, or one-half of 1 percent of the time, according to The HELLP Syndrome Society based in Bethany, WV.
HELLP took the Knox family on a roller-coaster ride over hills and down valleys, and narrowly negotiated medical turns.
And it brought Rebecca, 38, to her knees. "After 10 years of trying to get pregnant, all the surgeries and then, out of the blue You give us Jackson," she prayed. "I cannot believe You gave him to us just to take him away," She prayed alone in the quiet, after a doctor offered her a room in the hospital and told John it would be a miracle if his 10-day old son lived another 24 hours.
"I kind of felt like they needed to be told what the picture looked like," said Maria Gardner, a registered nurse working in the neonatal intensive care unit at St. John Medical Center. "In my experience and in (neonatalogist) Dr. Ricardo Miranda's experierence, we'd never seen a baby pull out of it - with the multiple problems he had."
A common preemie problem, under-developed lungs plagued Jackson. Respirator pressure had to be high enough to force his lungs to function. His lungs were so weak, though, that the respirator blew tiny holes through the weakest air sacs, collapsing his lungs, said Gardner. Jackson had as many as three chest tubes at one time, rather than the usual one tube. For the next six weeks, tubes remained in his chest to allow air to drain out so the lungs could expand.
Jackson's immature eyes required laser surgery. Doctors also had to create a drain, then perform surgery when his immature bowel perforated. Gardner said he was so critical he couldn't be transported to an operating room three floors below. So the surgical team went to him.
"It's a very stormy course in a way," said Dr. Ali Siddiqui, neonatologist and St. John Medical Center's director of the neonatology unit. "In the beginning you just take one day at a time. You deal with the situation. He survives. And you celebrate it. And you feel good about it and you go on one day at a time."
All the experts call Jackson a fighter, a miracle baby who continues to defy the odds. One comment made by the family's priest keeps playing in Rebecca's mind. "He has been touched by God."
Miracles Happen
Rebecca Knox had gone through several miscarriages, three major surgiers and a failed in-vitro fertilization during her 10-year marriage to John. In 1995, after contraception seemed hopeless, the couple adopted newborn Callie. Rebecca forgot about giving birth.
When she got pregnant with Jackson, they were amazed when tests showed that the pregnancy was progressing normally.
But one day, the side of Rebecca's upper right side severly hurt, she was so swollen that her eyes barely opened and her head ached so bad she cried.
Although she didn't know it, she had some of the symptoms of HELLP syndrome.
Nausea, vomiting, jaundiced whites of the eyes or the skin, bleeding gums or other areas can also be signs, said Dr. Dave E. David, nationally known authority and Harvard-trained obstetrician, gynecologist and infertility specialist based in Needham, Mass.
"(The danger) could be a lot. All the way up to death," said David,
author of the video "Making Womb For Baby,". HELLP can occur as early as
the 20th week or the middle of the second trimester. But generally, it
appears in the third trimester, he said.
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Weighing in at 1 pound, 9 ounces, Jackson was one of the smallest babies delivered at St. John, Siddiqui said. By some measures, the baby was 26 weeks old but his weight, actions and fused eyelids indicated he was only 24-26 weeks old.
Siddiqui said it's much better to wait until the fetus is at least 28 weeks along before birth occurs. But taking them earlier may be required to save the mother, child, or both.
With HELLP, the fetus doesn't grow like it should, he said. The mother's high blood pressure causes her arteries to constrict so the baby may not get the necessary nutrition and oxygen. There's a better than 90 percent chance of the baby's survival when it doesn't have to be delivered earlier than 28 weeks gestation, Siddiqui said.
Rebecca Knox said their priest, nurses, and Veesta Mosley are on the list of those who've helped keep her family uplifted through Jackson's trials. Mosley is the mother of two boys born prematurely because she had
pre-eclampsia or toxemia, which can be followed by HELLP. Tyrone is 3 years old and Virgil Lee Mosley III is nearly four months old, born Sept. 13, the day before Jackson was born.
Mosley has been unofficially assigned to help mothers of premature babies at St. John. Knox said Mosley tells mothers about healthy Tyrone, shows them his pictures and speaks as another calm voice. She has picked up from Mosley many cues on handling premature babies and tips on how not to panic, said Knox.
"Try not to worry if you're at the bedside. They sense that," Mosley tells parents. "You don't think they know, but they do. When you're upset, their whole mood changes. You can tell by the way they look ... They cry. You can't hear them because of the ventilator but they make the faces."
For a mother like Knox --- whose first sight of her son was on a television screen and whose first chance to hold him came when he was five weeks old -- Mosley is a godsend.
Today
Jackson is several ounces short of 5 pounds and he is off the ventilator that helped him breathe, although he still needs oxygen. Along with intravenous feedings, he now gets a bottle once a day.
He even cried out loud for the first time just last week. The ventilator had prevented him from making such sounds.
His parents are optimistic and doctors are cautiously optimistic. Possibly Jackson will go home in February.
Rebecca Knox said she feels they can gladly take on the future, even if Jackson has speech development delays or other difficulties latter.
More pregnancies? No thanks, she said. "My getting sick is one thing. I can handle that. But I would never put a child through this again."
Look at Jackson's battle scars!