Grateful family hopes to donate sleep chair to hospital

Savannah Rose, at age 4 weeks, always had a smile for her parents and grandparents, even when she was in pain, hungry or just plain tired of all the poking and prodding.

When Nick and Kristy Bauer of Lincoln welcomed their 7 pound, 2 ounce daughter, Savannah Rose, into the world one year ago, they felt the same pride and excitement that many first-time parents experience.

Aside from the usual disruptions that a wee one brings to a household, everything seemed pretty normal for the new family. That normalcy only lasted for the first two weeks.

Nick, a 1996 MHS graduate and Credit Analyst with Farm Credit Services, is the son of Kim and Randy Bauer of McCook. Kristy, who was an attorney for Lancaster County, grew up in Alliance, the daughter of Larry and Sherri Mundt who currently live in Papillion. Their world was turned upside down when their two week old daughter began having serious digestive problems late last August.

Savannah Rose today will celebrate her first birthday on Aug. 12. Her parents want to celebrate by donating a sleep chair to Children's Hospital in Omaha.

Savannah had an extreme case of Milk Soy Protein Intolerance. On Sept. 6, 2009, she was flown from Lincoln to Omaha because her hemoglobin level was extremely low and she was no longer eating. Her mother writes in a letter to friends, "We will never forget driving on 84th Street as the helicopter flew over us, and Nick said, 'there goes our Peanut."

On that day, the young Bauer family began a long battle of trying to figure out why little Savannah was losing blood. After three trips to Children's Hospital in Omaha, one trip to Children's Hospital in Kansas City, nine blood transfusions, numerous scopes, CT scans, MRI's, and finally surgery, the doctors at Children's Hospital in Omaha found the cause of bleeding.

Biopsies from her surgery revealed that Savannah has hemangiomas (birthmarks) in her intestines that bleed. "We never really grasped the severity of Savannah's blood loss until our last stay at Children's when one of the pediatricians told us that 'someone had been watching over Savannah'."

Her file was sent to Children's Hospital in Boston to the Vascular Anomalies Center and she was diagnosed with hemangiomatosis. She is one of only 19 known cases where the syndrome presents itself in the intestines. She began steroid treatments on Nov. 25, 2009.

"We will never forget the night she came out of surgery, trying to keep her calm after going days without food, or inserting her feeding tube by ourselves," writes Kristy.

Savannah was hospitalized a total of 41 days in her first four months. "She got out of the hospital on Thanksgiving Day, 2009, and hasn't been back," said her grandmother, Kim. She is currently on a low dose of steroids, and their goal is for her to be completely off the steroids by her first birthday.

Despite the rough start, the Bauers have a lot to be thankful for. They had good health insurance that covered the medical expenses. Savannah is exceeding their expectations developmentally, currently crawling and soon to be walking. She uses some sign language and is eating mainly solid foods. The smiley brown-eyed baby loves reading books, going for wagon rides, swinging at the park, dancing, and chasing after her two puppies, Oakley and Blue.

Savannah will be celebrating her first birthday on August 12th. Her parents, who have a deep appreciation for the staff on the 5th floor at Children's Hospital in Omaha, want to do something special to celebrate. They would like to purchase a sleep chair, a chair that folds out into a single bed, to be used by families who find themselves staying overnight with a sick child.

"The rooms at Children's have a small couch that doubles as a bed. We know first-hand that these couches are not comfortable and can barely accommodate two people," According to Kristy, the sleep chairs are much more comfortable than the couch, but each floor only has two of them. As the Bauers spent every night in the hospital at Savannah's side, they would put their names on a waiting list for one of the chairs and hope it would be available for them.

In lieu of presents for Savannah's first birthday, they are collecting donations to purchase one sleep chair for the hospital at a cost of $2,250. "We can assure you that Savannah is not falling short in the areas of clothes, books, toys, and other goodies, so we are very excited to give back for her first birthday." The Bauer's are also encouraging everyone to give blood, a gift that saved the life of their small daughter.

The Bauer's are asking friends in this area to help them raise the funds. Checks can be made payable to Children's Hospital and Medical Center Foundation and sent to Nick and Kristy at 5400 North 15th, Lincoln, NE 68521.

Nick and Kristy consider their "little Peanut", the girl with a smile that could melt your heart, a gift from God and they look forward to each and every day they share with her.