The miracle baby of Woodbury
Greg and Heidi Case of Woodbury were like any expectant parents -- thrilled and excited for their bundle of joy to arrive. But when Heidi was 30 weeks into her pregnancy, she had a premonition something was wrong.
"I just felt like something's not right and 'I just don't feel comfortable,'" she said.
Heidi was right. Their baby girl, Ellery, had too much fluid in her chest cavity. There could have been a number of reasons for this, but one thing for sure was that it was serious and it needed to be addressed immediately.
"It was just a whole whirlwind, you go from thinking you have a healthy baby to this in just a few hours," Heidi said. "It just kept getting more urgent and more scary."
After repeated visits to United Hospital, Heidi and Greg learned that the fluid had spread to Ellery's head, which officially meant she had Hydrops, or fluid in at least two body compartments. After a short time the fluid had spread to her abdomen, too.
But the doctor's couldn't tell them what her chances were or what caused it until Ellery had entered the world.
"That was just a constant frustration, nobody could tell you anything because they didn't know until she was born," Greg said.
But the statistics say the mortality rate of Hydrops is 98 percent.
"The doctor said something to me that I'll never forget, 'We don't know if her lungs are compatible with life," Heidi said.
Ellery was born on Sept. 30, 7 weeks premature, via cesarean because she was continuing to get sicker and they needed to get her out to see if they could save her.
"We saw her for just a second but we just hoped she had the lung capability to face life," Heidi said. "But I just had this feeling she's going to be okay. I don't know if it was mother's intuition or just really wanting a good outcome."
Immediately after Ellery's birth, she had to be rushed into a separate operating room so that they could get the fluid removed as soon as possible so she could begin breathing. When Ellery was born she wasn't crying, she wasn't breathing, she was blue, and she was limp.
"She wasn't able to breath, her lungs didn't have any room to expand," Heidi said. "They needed to remove the fluid as quick as possible."
After about ten minutes, but Heidi said it seemed like much longer, one of Heidi's nurses, who had accompanied Ellery, came running into the room screaming "She's pinkening up! She's fighting! She's coming around!"
The doctors removed 14 ounces of fluid from Ellery's chest. After several more minutes of Heidi sitting alone with just a few anesthesiologists, she heard her baby was coming to see her.
"All of a sudden I hear the doors open like a big boom," she said. "They were bringing her in to see me. And then we started our journey in the NICU."
Ellery spent a whirlwind 28 days in the St. Paul Children's Neonatal Intensive Care Unit with two chest tubes.
"The NICU is kind of a blur," Heidi said. "It was just 28 days of a roller coaster."
Heidi and Greg almost lost Ellery the night of her birth when Ellery's oxygen dropped, her heart rate dropped, her blood pressure dropped and she developed a pneumothorax, or air pocket in her lung.
"She almost died that night," Heidi said.
Ellery went through a series of highs and lows, but she was doing better than any of the medical staff could have ever dreamed, Heidi said.
"She was the miracle baby of the NICU," she said. "She was doing better than expected."
But Ellery wasn't out of the clear, upon feeding Ellery formula and noticing that the chest tubes were clogging some how, the doctors switched her over to a less fatty formula and found the root of Ellery's ailments.
The doctors discovered that Ellery had Chylothorax, which is a baby's inability to absorb fats. She also had a tear in her lymphatic system.
"It was just a domino effect," Heidi said. "For a while there she was kind of a wireless baby."
Ellery continued to have to go through diuretics to remove the fluid from her lungs. But on Oct. 27 Ellery took the journey home.
"We took two kids trick or treating."
Originally the doctors had predicted Ellery would remain in the hospital for at least two months, but after 28 days she was out of there.
It wasn't an easy road for Heidi, Greg and Ellery, there were still some scares and she had to go back to the hospital twice, but with the help of her parents she was able to overcome it.
"We were her doctors, Heidi said. " We started taking over and started not just being mom, but being a nurse."
Heidi and Greg were responsible for monitoring Ellery's oxygen, blood pressure, lungs, and taking the necessary steps to cure her; such as administering the diuretics and giving her oxygen.
Then on Feb. 12 Ellery was given a clean bill of health and was switched off of the less fatty formula back onto normal formula.
Now, Ellery is a perfect bouncing 5-month old baby with no long-term effects of the ordeal that she had to go through. Even though Ellery is very small for her age, since she was premature, she will eventually catch up with everyone else.
"The doctors were always surprised at her, they never expected her to do that well that quickly," Heidi said. "They really can't explain why she did so well, it's always going to be a big mystery, and they can't even explain why she got sick in the first place."
Heidi said she always hears from her family and friends how amazed they are in her's and Greg's ability to deal with all of this and still remain optimistic through it all.
"Any loving mother would have done the same thing if it was their child --I had to be strong for her, I needed to be there for her," she said. "I don't feel like I did anything extraordinary, you just have to dig deep down and you just do it because it's your baby."
Once Ellery is old enough to understand, Heidi said she plans to tell Ellery her story so she knows what a fighter she is.
"She is special, she's my miracles baby, I want her to know how strong she is," Heidi said. "She's the strongest person I know, she's gone through so much and she's such a fighter."
To learn more about Ellery and her journey visit her Caring Bridge website at: http://www.caringbridge.org/visit/ellerycase
Heidi and Greg will be walking in the March of Dimes, the March for Babies, on April 26 at Phalen Park to help raise money for the St. Paul Children NICU, where Ellery stayed. For more information or to donate in honor of Ellery visit their group site at: http://www.marchforbabies.org/ellerysmom