Celia comes home

After the first 22 days of her traumatic life, Celia was released from APH. (Arnold Palmer Hospital) .Mom & Dad were given a crash course in apnea monitors, suction pump machines, nebulizers, & feeding pumps. Celia failed her car-seat test so we were forced to buy a lie-down baby seat to carry her home. We made it back to the house & settled into our new routine. Luckily Marcy's sister Lori had flown out from Nashville to help with the baby so we were extremely grateful to have someone with newborn experience on hand. All went well for the first week at home. We established our routines for feeding & medicating the baby. We started the ball rolling with Occupational, Physical & sight therapy & learned what the true problems were.
When Celia was a month old she suffered an apnea (her breathing stopped). Marcy was able to stimulate her to get her to start breathing & we called the Neonatologist (Dr Hardy) @APH to find out what to do. They told us to bring her down to the ER @ ORMC then she would be admitted to APH. At this point Celia had no pediatrician, so was at the mercy of the ER doctors. We rushed to the hospital in Friday afternoon rush hour traffic, trying to stay cool. We pulled into the ambulance bay & parked in the first spot available. As we were disembarking from the car a security guard yelled "Hey! You can't park there!" I explained to the genius with the badge that we had an emergency & our baby had stopped breathing recently. He kindly informed me that I would be towed if I left the car there. After sharing my thoughts with him & the other 50 people in the ambulance bay about his intelligence & compassion at the top of my lungs & in lots of dirty words, I told him he could tow the f...ing car & went inside. The calm nurses soon took care of business & in a short amount of time they diagnosed Celia with RSV. No big deal with adults but potentially fatal to our little angel. They said they would have to admit her to APH again so sit tight & wait for an ambulance to transport her the 200 yards to the adjoining hospital. Marcy left for the airport to bring our friend Chris from Milwaukee to see the baby. We stood around waiting for the transport team to come & collect Celia. The hours ticked by. The girls went home. 10 hours later they finally transported Celia, me & what was left of my sanity to APH. I checked her into the PICU ward & called Marcy to come & get me.
They kept Celia in the PICU for 3 days before transferring her to an isolation room in the "Special Care Unit". The treatment didn't appear to be very special there so we decided to camp out in shifts with Grandma, Marcy & I showing the staff there what special care really is. After 3 days in an isolation room they moved her to a regular private room without masks & gowns. After a few days on oxygen & other treatments we were allowed to finally bring our little angel home again where she finished her recovery & continues to improve.

Celia's rocky road. Part I

If you didn't already know, Celia was born on 10/11/05 @ South Seminole Hospital in Longwood, Florida. Due to our past history with childbirth we were pretty anxious but not overly concerned. It was Celia's due date, Dr Perry would be there for the delivery & there were no overt signs of trouble. During the labor, Marcy's contractions were giving the baby erratic heartbeats & they decided after losing the fetal monitor signal a couple of times that we should probably give Marcy a Caesarian Section. There was no urgency involved. It was all very calm & slow. I was allowed to be present for the C-section so I gowned up & stayed with Marcy, holding her hand throughout the entire gory event.
At 12:48 pm the baby was born. I was craning my neck to see the baby's sex & finally spotted the gap where the willy would have been. I told Mama she had a beautiful baby girl. Just what she wanted to hear. The baby hadn't made any sound at this point & then all hell broke loose as they tried to get a heartbeat. All heroic measures were employed, the room was packed with at least 20 people all trying to save our baby girl. After 20 minutes I looked at Dr Perry. He just shook his head at me as he stitched up the incision in Marcy's belly. They were injecting the baby with stimulants, bag-breathing for her, giving her heart compressions, etc. Marcy & I were in shock, wondering what had gone so terribly wrong so fast & knowing that our long-awaited-for baby was in serious trouble. At least 20 minutes went by before they were finally able to detect a heartbeat. They set at work to stabilize the baby, intubating her, IV-ing her, threading catheters into her belly-button up to her heart, doing everything possible to save her life. A Neonatal team was airlifted in from Arnold Palmer Hospital to transport our little girl back to the NICU unit there. We were allowed to see her, hold her hand & caress her beautiful little face before she left, not knowing if we would ever see her alive again. We decided to name her Celia Marie. A name as pretty as the baby herself.
Marcy was eventually transported to Arnold Palmer hospital as well so the whole family was together in one place at least. The NICU unit is a little intimidating. There is a mandatory 3 minute hand/arm scrub, and you shouldn't look at all the poor little afflicted babies to preserve their privacy. Alarm bells ring constantly, there is a constant hum of life-support machines, pumps,monitors, beeping & buzzing relentlessly. We found our little girl at the end of the row in room #3 . We were told that the problems were caused by Group B Streptococcal infection & that Celia had massive brain damage due to lack of oxygen (Hypoxic Ischemic Encephalopathy) & that she probably had Meningitis which would place her in great risk if it developed fully. We were told in 3 days we should know. We prepared for the worst, spent shift after shift at her bedside, singing to her, crying, taking note of every little movement, sound, facial expression, etc. Hating to leave her bedside in case she wasn't there when you got back. Within a week the danger from Meningitis had subsided & we learned of her prognosis.
Because of the hypoxia at birth, Celia has no gag reflex, no ability to suck, chew or swallow, severe Cerebral Palsy, Cortical visual impairment (blindness) & constant seizure activity. Her Apgar scores at birth were zero across the board. She was dead for approximately 30 minutes. The doctors recommended that we install a Gastrostomy tube to feed her as well as a Nissen procedure to prevent reflux from being aspirated into her lungs. Dr Plumley performed both surgeries at the same time & they were successful. They were able to remove the ventilator tube after a day or so & our little girl was breathing on her own!!
Celia spent the first 22 days of her life in APH NICU. On the day she was released to us, they tested her hearing & she failed. We were convinced however that she could hear. We sang to her constantly, told her stories, adored her & cuddled her whilst trying not to pull out any tubes, IVs, sensors, etc. We could tell that she was responding to us even though all the Doctors gave us little or no hope of any improvement. We were told she wouldn't live more than 2 years more than likely. They said her gag reflex would not recover & due to her not being able to swallow her own secretions, she would eventually catch pneumonia which was her greatest threat to her survival. She would have developmental problems at every level. We would need to feed her through her G-tube, we would have to stay awake 24/7 in shifts to monitor her & suction out her secretions as she couldn't swallow them. In short, she was living on borrowed time & had zero chance at a normal life. We listened to the dire warnings, processed them as educated guesses & took our little angel home.


Words of gratitude:There are a few people who did make our first few weeks a little more tolerable. Firstly; Celia's grandparents who cherish her & sacrifice everything for her well-being. My business partner Mike, who is also my best friend and a non-blood brother. He still runs our business without help & without any complaint or request for reward. Our friends, family & neighbors who continue to support us, who brought us meals when we were too tired or involved to cook for ourselves, Rose, Kyle & Brad for babysitting through the night on occasion, Cal (my little brother) who dropped all to rush out from California to support his family. The people who visited Celia in the hospital: Steve, Kathy, Maxine, Peyton, Mona, Tanis, Chris Gentile, Maureen, Mark Leaf, Janine, Mai & Ken, Stacy Grow. Sorry if I left anyone out. Also the people who sent cards, prayers, positive thoughts & best wishes for us all. My family & friends in New Zealand, Australia, & America. You all made a difference whether you know it or not. You gave us hope & helped keep our spirits up. You sent us gifts & wished us well. You are all wonderful people & we're lucky to have you in our lives. Also to the nurses & doctors @APH NICU who took such good care of Celia & delivered her to us finally. To Joan Hebert, our social worker at APH, who smoothed the way for us in many ways. Thank you all.

Pneumonia!!!!!!!!!!!

Celia is recovering from her first bout with pneumonia. The poor wee thing spent her 7 month birthday sandwiched in the back of the 4-Runner riding to Key West between concerned Mom & doting Grandma. The typically 8 hour drive turned into a 9 1/2 hour affair with bickering aplenty & some creative driving by Grandpa. We finally arrived at our fabulous penthouse condo overlooking the bay & Old Town. Unpacked the food, baby support units & beer & wondered about the accuracy of all non-rectal thermometers. Celia's temperature concerned us all, so we kept a close watch on all vitals. Grandma the Trooper volunteered to pull the first shift with Celia. Mom, Dad & Grandpa limped off to bed, tired, stressed & pissed off. Grandma woke us at 2:00am after 11 seconds of sleep, snatched between screeching tire car wrecks, sirens & bloody motorcycles. (Funny how sound rises eh?) Celia's temperature was @ 102.5 & climbing. After bumbling around in the dark sidestreets of Key West we finally located the Hospital. During a weird deja vu, where a security guard questioned our ER parking & earned hisself a good cussin' out, (ORMC 11/11/06) we checked the baby in and waited for the bickering night staff to remember what an emergency was. A bar room brawl victim received all his friends as visitors once they'd been kicked out of "The Red Garter Saloon" Finally we were summoned, tested, x-rayed & diagnosed with aspiration pneumonia. The ER Dr. in Key West scared the shit out us by expressing a desire to airlift Celia to a pediatric unit in Miami but informing us he didn't know how long the medevac would take. We asked him if she could go to Arnold Palmer in Orlando but that wasn't an option. He spoke to our pediatric guy, Dr Cannizarro, & they agreed we could make it to Orlando . Abandoning Grandma & Grandpa at the penthouse, off we went with our little darling erupting snot & saliva like a Rotorua geyser. After a quick return trip taking 6 1/2 hours we made it to APH in Orlando where the kind doctors let us bring the little one home to her own ICU. Three doses of antibiotics later she sits happily beside me as I type. Gurgly as ever & basking in my adoration!! She is doing well now & continues to fight.