I want to wish everyone a Merry Christmas & Happy Holidays! I pray for all those families of Cherubs on Earth & in Heaven! My heart aches to see the numbers of babies born with CDH across the world. Keep faith, hope & pray because miracles do happen!

Wow! So much has happend since I was last on here. I had to return to work in February, which wasn't an easy decision but one that was for the best as the time. Scott resigned from work so he could stay home with Josie. Another decision that wasn't easy to make. Somehow we managed and made it through an ever changing year. We're praying 2009 is our year.

I am not able to accuratly bring you up to date without my journal or calender in front of me so I will just touch on how Josie is doing today.

She is going to be 15 months old Dec. 13th. Josie is walking, talking, eating, causing trouble, breaking hearts, laughing, playing, following her big brother everywhere, you name it, she's doing it! We no longer have OT/PT at home, no more visits to the doctors except for her routine check ups & shots, no follow up with surgery or special care clinics. It's wonderful, such a relief.

We recently were asked by our Peditrician to see a Nutritionist as a precaution. The doctor was concerned with Josie's weight gain. Although she is eating everything a "normal" or "healthy" child her age eats, she is not gaining weight as consistant as the doctor would like. I blame her metabloism & very active lifestyle. Josie doesn't sit still for a minute durin the day. I always say that she's making up for the three months in the hospital. Anyway, we went to the Nutritionist who took Josie's weight, messurments & noted her eating habits/diet. She was not overly concerned & took it as a preventative visit. Everything we were doing is right. Josie eats a high calorie diet of whole milk, carnation instant breakfast, meats, veggies, fruits, etc. I don't understand why she's not gaining weight when I'm eating all the same foods and don't have a problem gaining!? So we were asked to keep up what we're doing, with a few tweeks and return just to get a weight. Our second visit, a little over a month later, Josie didn't gain so much as an ounce. I'm baffled. I thought for sure she had gained weight. We even bought her the next size up in diapers. Now the Nutritionist is concerned. We have a 15 month appointment coming up next week for shots. I was instructed to get a weight & if Josie has gained we don't have to continue to see the Nutrionist otherwise we have a follow up in Feb. 2009. That is where we are with Josie's health concerns nowadays.

I'll have a more thorough update next post. To go back, Josie, Scott & I got so fed up with the vomiting, acid reflux, the NG tube and oral adversions that we worked really hard with Josie. Nor were we very open to the idea of a "Micky button" or a hiatal hernia repair. We decided one weekend to simply take out the NG tube (continuous feeds) and focus on bottle feedings. Well, she took it like a champ! All the OT at home had paid off. After that there was no more throwing up, gagging or acid reflux. Especially no more feeding tube! It was a another prayer answered.

In 2005, I rekindled with my high school sweetheart, Scott, after 10 long years of no contact & many dead end relationships. We arrainged to meet Christmas in New York while I was home for the holidays. It was love at first site. After a few months of a long distant relationship, we decided that we had to be together. Me being a single mother of Justin (11 yrs. old) knew that I couldn't pick up & run off to N.Y. Scott was able to transfer his job here to K.C. so he moved from N.Y. to Missouri in Feb. 2006. He moved into the house that I made for my son & I and made it a home. We felt that our family was not entirely complete. In July 2006, we began trying to get pregnant. Finally, in January of 2007 it happend! Scott was over joyed to be expecting his first child & Justin was thrilled and nervous to be an older brother since he was there when I had 2 miscarriages in the past. Throughout the pregnancy everything was going great. The baby was growing, I was healthy & we couldn't be happier. That was until Sept. 11, 2007, a day that already hits close to home being the daughter of a retired FDNY firefighter. We were scheduled to be induced at 39 weeks since I was measuring big for my dates. The doctor wanted to do one more ultrasound to get an idea of how big the baby was. The sonogram tech had the most heartbreaking look on her face & then told me that something didn't look right with the baby's lung. She went over the results with the OBGYN who then made an appointment for me to see a Perinatal specialist the next day. It was then confirmed, 2 days before I was to give birth, that our baby girl would need to be delivered at Truman Medical Center as opposed to Liberty Hospital & then immediatly transferred to Children's Mercy Hospital. Josephine Carmella Quick was born on Sept. 13, 2007 at 10:24pm with Congenital Diaphragmatic Hernia. She had small hole in her diaphram allowing small intestines & spleen to move up into the chest cavity, crowding the left lung & shifting the heart to the right. Due to the heart shifting it was enlarged causing pulmonary hypertention with pressures from 95-100! The neonatal doctors tended to "Josie" as soon as she was delivered. She was intubated, put on a ventilator before she could take her first breath. Within an hour, the CMH Transport Team had her ready to go across the street. Scott & I were able to see our baby for a minute and not a second more. We were so helpless, distraught, heartbroken & scared for our daughter. It was agony to have to wait until morning before I could see her. When I was able to really meet my new child for the first time, I noticed that she was barrel chested & very swollen. Despite the wires & tubes connected to her, she was beautiful, looked like her daddy & had a full head of curly black hair. We were not allowed to touch or stimulate her in any way. We couldn't do anything but look at her. It was like someone ripped my heart out. "Here's this gorgeous baby that's all yours but you can't touch it." That has to be the worst feeling I've ever had in my life. Little did I know, there was much worse feelings to come. Three days after Josie was born, she needed a blood transfusion because her red blood count was down. Then we were told she needed what is called ECMO, extracorporeal membrane oxygenation. Basically, its a heart-lung bypass machine. Our newborn had two cannulas put into her neck to help oxygenate her blood. Most children on ECMO come off in a few days, some a week or perhaps two weeks. Josie was on it a day shy of 3 weeks. Surgeons saw a window of opportunity to perform the repair surgery on the machine which was an added risk of bleeding beacause she was on heparin, a blood thinner. The repair was a success! The doctors were able to remove the intestines & spleen from the chest cavity and close the hole with a patch. She was doing well in recovery until her blood loss went from 30 to 100 ml/hr. She was not only draining large amounts of blood from the stomach & chest drains but she was becoming so swollen that her belly was black & blue from bleeding internally. The doctors called to tell Scott & I that we needed to be there asap & if there was any family nearby to have them come too. Josie needed come off ECMO right away or she would continue to bleed to death. The neonatal doctors didn't think she was going to make it. The odds weren't in our favor. Josie's pulmonary pressures were still dangerously high for her enlarged, overworked heart to keep her going without support. Not to mention, her underdeveloped left lung was not strong enough to get oxygen into the blood or breath off CO2. It was the worst day of our lives. Watching the doctors cut these large tubes in her neck that were keeping her alive since she was 3 days old, not knowing if she would make it after they did. An hour passed. The tention in the OR of the Intensive Care Nursery was thick. Nobody thought for a second that this little fighter would still be with us but she was. Blood gases were drawn to check her CO2 levels & they came back fairly low! This was wonderful news! Althought Josie was on a high frequency oscillator vent, her frail body was doing just what it had to to stay with us. The next few months were not going to be easy. We waited almost 2 months to hold her. She had a lot to overcome still. She needed to come off the high frequency vent onto a conventional vent that would provide less support. She was now addicted to heavy narcotics such as morphine, versed, methadone & ativan just to name a few. That meant withdrawals. Josie still needed to have one more surgery to close the incision & remove an abdominal patch that couldn't be closed due to swelling. She was also on nitric oxide to bring the pulmonary pressures down. Along the way Josie had pseudomonis, a bacteris in the lungs from having a tube in there & MRSA staph infection. This poor little girl was hit with everything, she has been to hell and back. She still fought every step of the way to get through this ordeal and complete our family. On December 5, 2007 to the amazement of the doctors, nurses, surgeons & other staff at CMH, she was going home just a week before her 3 month birthday with nothing more than a nasal feeding tube & some scars that are healing everyday. Everyone that has cared for Josie, as well as Scott & myself, saw how far she has come, believes that she is absolutely a miracle. Her pulmonary hypertention is gone, her heart is back to normal size, her left lung will continue to grow up to 7 years & although an MRI showed that she had some bleeding on the brain, she may have developmental setbacks in the future, she is alive & doing well. As sick as she was & everything that she has been throught they never thought she'd be going home before Christmas let alone in 3 months. She will need another surgery in the near future to place a GT tube (feeding tube) in her stomach and repair a hiatal hernia that happend after the diaphram was repaired. We are ecstatic to have our daughter home & Justin is in heaven when he holds his baby sister. Life has been such a rollar coaster for all of us since we found our Josie was sick. Josie has given us faith, hope, love, strength and touched many lives near & far. She has earned her wings & is now a cherub.

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Josie will be 4 months old on the 13th. She has been home since December 5, 2007. We've been to the special care clinic, surgery clinic and the pediatrican a couple times each now. Josie is doing really well. At the time of discharge she weighed 15 lbs. 12 oz. She lost 4 oz. the first couple weeks home but has now gained them back plus two. Josie gets all her feedings through an NG tube. Since she was on the ventilator since birth she has never taken food orally. The surgeons are not comfortable repairing her hiatal hernia & placing a G-tube in anytime soon. They want to give her abdomen and diaphram more time to heal. Josie vomits anywhere from 2-4 times a day, sometimes throwing up the tube. It's very stressful, on everyone, having to reinsert it. Next week we will begin physical & oral therapy at home. I'm looking forward to learning new ways to help Josie any way I can. I get depressed at times because I feel like there is more I should be doing for her. Being on continuous feeds, I change the feeding bag every four hours. She will not suck on a pacifier let alone a bottle. As of last Saturday, she is finally off all narcotics. At the time Josie was dischared, she was still on Ativan & Methadone. I had the pleasure of weaning her off them. I'm happy to announce that she is off and not having any withdrawals. We get a little break, about a month, until our next visit to any doctor. Hopefully, it will be a smooth and quiet month.

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