POST #2

Helena's tough beginnings...

Aaron and Mary spent Helena's first day, Thursday, Aug. 24, with her in their room at the hospital. She continued to look at them and squawk throughout the day. What a beautiful, perfect, lovely baby, they thought as they admired her. Aaron's parents, John and Judy, joined the new family at about noon; they had been staying at Mary and Aaron's apartment in Chicago, getting it ready for them.

At one point in the morning, when the nurse was doing a routine check on the baby, she thought she heard something irregular in her heartbeat. She mentioned that there might be a murmur, and then took the baby in and out throughout the day for further checks. An EKG was done, among other tests--all of which Mary and Aaron believed were routine.

By late afternoon, a Rush-Copley medical team with a neo-natalogist came to Mary's room, and told them that Helena had some very serious heart problems, and that they would need to take her immediately to the Neo-Natal Intensive Care Unit. It was hard news for the new parents and grandparents to digest; Mary asked, "Do you mean right now, from my arms?" The doctor said yes. He briefly explained what some of the issues were, but said that a cardiac specialist from Lutheran General in Chicago would be calling shortly to describe the problems in more detail.

Things started moving into high gear as they took Helena to the NICU and hooked her up to various machines and monitors, and prepared to have her transferred to Advocate Christ (Hope Children's) Hospital. Sometime after 5:00 pm they received the call from the specialist, and they learned that baby Helena had three serious issues with her heart: 1) there was a hole; 2) there was a valve problem; and 3) there was an artery problem. Surgery would need to be done within the very near future, pending more tests.

By 9 pm on Thursday night, the team from Christ Hospital arrived and prepared Helena for the 40 minute trip by ambulance. Aaron accompaned Helena; John and Judy followed. Aaron said that they made the trip in 37 minutes, with the lights flashing the whole time. They were able to stay at Christ until they were sure that Helena was settled into the PICU (Pediatric Intensive Care Unit). At around midnight, they headed back to the Hyde Park apartment to get some sleep. Ironically, Christ is the hospital where Aaron is supposed to begin his one-year residency as a chaplain on Friday, Sept. 1.

Mary, meanwhile, was still at Rush-Copley. Because of the C-section, she couldn't leave the hospital quite yet. Karla and David arrived from Decorah at about 10 pm to be with her--Karla stretched out on the chair next to Mary's bed, and David got a room at the Super 8. In order to help her sleep that night, the doctor prescribed sleeping medication.

On Friday, August 25, Aaron and John returned to Christ Hospital to spend the day with Helena. She has her own room in the PICU, and they took turns holding Helena throughout the day, and talking to the different medical professionals as they stopped by. Aaron learned that the baby's surgery would probably take place on Thursday or Friday (Aug. 31 or Sept. 1). They also learned that Helena's heart defect was a much longer-term problem, and that she will in fact have a total of 2-3 surgeries this year, with more to follow at key transition points in her growth (5 yrs. old, 10 yrs. old, 20 yrs. old) and probably every 10-15 years after that. The doctor said that Helena will not be an olympic swimmer, but most other things will not get in her way.

The first surgery that will take place this coming week will deal with two of the three problems mentioned above--those involving the valve and the artery. Surgery to deal with the hole in her heart will take place in 6-12 months. The longer terml, ongoing surgeries are connected to the valve problem--new valves that match the size of her heart will be re-placed throughout her life. This first surgery is called the "Norwood Procedure." 1-2% of the babies have the kind of heart problems that Helena has, so the procedure, while not common, is not unheard of. The surgeon at Christ who will be performing the surgery is one of the world-renowned specialists in this area, and he is very confident about Helena's prospects.

The surgery will take 6-8 hours, and will involve two surgeons--the specialist and and an assistant. Helena will stay in the hospital for about another three weeks after the surgery; the final week or so will mark a transition between the NICU and a regular ward.

Right now, Helena is doing remarkably well. She is healthy in every other way, and has moved from squawking and staring to sleeping a lot, just a like a regular newborn. Mary will not be able nurse her until after the surgery, so right now, Helena is receiving nourishment through her naval. Aaron calls the liquid "Super-Gatorade".

Mary was released from the hospital early--Friday afternoon instead of Saturday morning. Karla and David drove her directly to Christ so that she could hold the baby for a little while on Friday evening. She was so relieved to see the baby, and they both seemed to relax in each other's presence.

Mary's mom, Dorothy, arrived on Friday afternoon, so there are now a sizable group of concerned relatives and friends helping to make sure that Mary, Aaron, and Helena, are doing alright.

Today, Saturday, August 26, Helena continues to do well. Aaron, John, and Dorothy have been at the hospital, and Dorothy met her grandaughter for the first time. Mary will visit later in the day; we are all "encouraging" her to take it easy, and to make sure that she allows herself time to heal. Her blood pressure has been running high, and the doctor has told her that she needs to sleep and eat and relax. She is also working on pumping milk to store for the baby--as of this afternoon, this is starting to work better.

If you have questions or you'd like to leave greetings for Mary, Aaron, and Helena, please do so using the comment feature. Karla will be helping to maintain this blog site, especially throughout the next couple of days. Mary and Aaron will write when they can.