Final Maddie Update from Heather's Dad

On November 11th, after Heather was confined to bed for almost three months including nearly three weeks of hospital bed rest, it was decided that due to deteriorating prenatal conditions, Madeline Alice Spohr would be born, 2 1/2 months early, through a cesarean section procedure. Heather & Mike were told by the nurses not to worry if the baby didn't cry and that the baby would be routinely taken away for a thorough medical exam. Madeline was born in the late afternoon and almost immediately cried giving Heather & Mike a sense of relief, Adding to their relief was the fact that Maddie, at 3 pounds, one ounce, weighed more than was predicted by her prenatal exams and that's always a plus in extreme premature births. Very quickly after that Maddie was hurried away to be examined by a pediatrician and Heather was sent to recovery. 15 minutes later the pediatrician asked Linda and I to leave the recovery room in order to talk with Heather & Mike in private. The doctor informed them that Maddie was a very, very sick baby and that she was having acute problems getting air from her lungs, processed through her heart and distributed throughout her body. The doctor felt that Maddie's' immature lungs were not up to the task of delivering oxygen to her heart and that she might have a heart problem as well. Both are common problems in extreme preemies. She also stated that St John's Hospital didn't have the capabilities to treat Maddie's condition and recommended transferring her ASAP to Cedars Sinai, Children's Hospital or UCLA Medical Center where they could provide a new Nitric Oxide treatment that would give Maddie the best chance of survival. The decision was made to transfer Maddie to UCLA because it was close to home and a teaching hospital where the latest techniques would be available. Needless to say Heather & Mike's feeling of post operative euphoria was cut away by the reality that their baby was very sick. After a few minutes of tears they decided that Mike would follow the baby to UCLA while Heather would be back recovering in her room. Meanwhile Maddie was on a respirator at St John's where, in order to get enough oxygen to her heart, her breathing rate was increased to a mind boggling 600 breaths a minute. A short time later the special UCLA ambulance crew, equipped for preemies arrived and they started what they expected would be a 10 to 15 minute transfer procedure. An hour later the ambulance crew and hospital staff were finally able to stabilize Maddie enough for the transfer. The problem was that transfer equipment could only deliver 100 breaths per minute which wasn't enough to keep Maddie stable. It was decided that the crew would, "hand pump" Maddie for the entire transfer in order to deliver enough breaths for the trip. Trying to simulate 600 breaths a minute by hand pump is a very difficult and arduous task but it was the only option at that point. Heather, not knowing what the future held, requested that she be allowed to wait on her gurney out side the St John's Neonatal Unit so she could get a glimpse of Maddie as she was transferred to UCLA. After an hour of waiting the ambulance crew pushed through the Neonatal doors, affording Heather a glimpse of her baby and rushed Maddie to UCLA Medical Center. Heather finally arrived at her room and Mike went directly to UCLA. Maddie was admitted to the UCLA Neonatal Intensive Care Unit and was immediately treated by teams of nurses and Doctors who had great difficulty getting her to stabilize. After quite a bit of time Mike was taken to a private conference room where one of the attending doctors informed him that Maddie was a very sick baby in great difficulty and that now would be a good time to call the chaplain and have him standing by. Mike called Heather and after being informed of the grave situation, she decided that she was going to UCLA to hold her baby and started to check herself out of St John's Hospital just a few hours after her operation. During the middle of her check out UCLA was able to finally stabilize Maddie allowing Heather to remain at St John's. Late that night Maddie again went into crisis and this time Heather did leave St John's arriving at Maddie's side a short while later. Maddie almost immediately stabilized and after an hour or so Heather returned to their home where she was able to get a little rest. The next day the hospital repeatedly had difficulty keeping Maddie stable and again asked if Heather & Mike wanted the chaplain standing by. Heather returned to Maddie's side and Maddie responded by stabilizing quickly. The UCLA medical staff advised everyone that for the next two and a half months their lives would be a roller coaster of emotions and not to get too overconfident or slip into despair. That was sage advice as Maddie experienced severe breathing difficulties as well as three independent infections which required all of us to completely "gown up" including gloves before we got near the baby. Early on in her stay Maddie was attended to by heart specialists who were able to determine that her problems were more lung than heart related and that in fact she may not need the heart operation that was originally suggested. They also stated that Maddie was a very sick baby and that only a "slim" minority of babies in her condition survived. Through crisis after crisis Mike & Heather remained emotionally strong and their day to day confidence grew allowing them to cope with a situation no young parents should have to deal with. At one time Maddie looked like a plumber's nightmare with numerous lines entering her little body to the point where she was hard to make out through all the plastic, tape, wires and a breathing intubation tube in her mouth. Sometimes she was so swollen that she couldn't open her eyes. And for the first week there was always a team of nurses and doctors hovering over her 24 hours a day. Slowly Maddie began to respond to her treatments and after three weeks Maddie was finally at the point where Heather & Mike could hold her for the first time although it wasn't easy with all the medical equipment involved. Gradually more progress was made than set backs and Maddie's infections cleared up. It seemed to take forever but Maddie's lungs healed, matured and she
was able to finally breathe on her own. After awhile Maddie was able to drink from a bottle. Eventually Maddie was moved to the "Step Down Unit" which is more about growing and feeding than it is about healing.

All of this culminated yesterday at 12:50 PM when, after 2 ½ months at UCLA, Madeline Alice Spohr was able to leave UCLA Medical Center and see daylight for the first time. How did she respond? She closed her eyes and fell asleep. Shortly thereafter Heather, Mike & Maddie drove home to begin the rest of their lives together.

Heather & Mike's strength was a result of the support they received through the thoughts, prayers and best wish's from all of you. The Spohrs & Buchanans would like to thank all of our family, friends, prayer groups, and the students at La Reina High School for their constant support. It would have been overwhelming without you.

In my life I've had many opportunities to observe medical personnel acting professionally under emergency circumstances. The medical staff at UCLA Medical Center, Neonatal Intensive Care Unit are a cut above the rest. They never gave up regardless of the odds. With Maddie they worked on their days off and they worked uncompensated overtime to make sure that everything was being done insuring that there was always a seamless transition of information from shift to shift. I
observed them working with other babies whose lives they knew would be measured in days and they never quit caring. They worked through their own tears and gave every baby the best life they could. They worked tirelessly and were somehow always upbeat. What can we say to adequately thank the people who saved Maddie's life and were able to provide her with the level playing field that every child deserves? It
can never be enough. We can only say thank you from the bottom of our hearts.

This ends The Maddie Hospital Updates. Heather & Mike started a blog http://thespohrs.blogspot.com/ that's been chronicling their lives with Maddie from the beginning and they invite everyone to read it.

Kirk