I'm a single mom and I have 2 girls, Bailey 4yo (9/15/10) and Piper 2yo (10/23/12). My Miracle Baby Piper was born at Shands @ UF in Gainesville, FL on 10/23/12. She has Spina Bifida L4-L5 (or mylomilingocele) with hydrocephalous, right ventricle aneurysm of the heart while she was in utero and is currently healed, an open PDA in the heart and Arnold Chiari 2 malformation. At 5 hours old she had her first surgery that included 2 procedures that removed and repaired the mylomilingocele and a VPshunt was placed in her head to drain the CSF (cerebral spinal fluid) that was collecting on the brain (hydrocephalous). On 10/27/12 neurosurgeons at Shands discharged her from their care but she was still in need of NICU so due to having a 2 year old back home in Milton, FL we were able to be life flighted to SHH (Sacred Heart Hospital) to continue our NICU care and I could also be with my 2 year old (Bailey's age at the time). On 11/5/12 we were scheduled to go home that morning for the first time but during the night her incision on her back, where her spine was repaired, started leaking CSF and we were emergency life flighted back to Shands. 11/6/12 she under went her second surgery and included her 3rd & 4th procedure where the neurosurgeon team repaired her back incision and repaired a clogged cath going from the brain to the shunt. 11/7/12 the shunt incision on her head started leaking and 11/8/12 underwent her third emergency surgery procedure number 5 to once again repair a clogged shunt cath. 11/10/12 she went home for the first time ever to her BIG sister Bailey who was very proud of her and loves her very much. 11/17/12 Exactly one week to the day she was once again life flighted back to Shands cause she started leaking CSF from the shunt incision again and she had her forth surgery and 6th & 7th procedure that once again replaced a clogged cath and replaced the shunt pressure valve with a lower one that would open sooner to prevent clogging. 11/19, 11/20 & 11/21 she continued to leak from the incision cite so on the afternoon of 11/21 she went under for surgery number five and 8th & 9th procedure the remove the whole shunt system altogether and place a external ventricle cath that drained into a collection bag. In the mean time Thanksgiving came and gone and we were not able to be home with my daughter (her BIG sister) and the rest of our family. From 11/22-24 it continued to leak from the cite due to this external cath clogging so 11/24 the decision to replace the shunt system completely due to the risk of infection was far greater then letting her heel completely and she once again under went her 6th surgery and 10th procedure and this time placed the shunt in a different location and place the valve near the top of the skull instead of the bottom like in the past. Praise God NO leaks but now she's still not out of the woods as of 11/26 she's being treated for precautionary meningitis do to all her labs being compromised even though her cultures of CSF has never grown any bacteria. And as of 11/29 she is still leak free and finally above birthweight at 6lbs 11.8 ozs (birthweight 6lbs 7.2ozs and dropped below5lbs). She went home on Wednesday 12/5/12 for good. We have not had any problems for the last 8 months till now. Aug 9,2013 I took her in to our local hospital where the Neurosurgeon kept saying she was fine and was adamant that the shunt was working. I kept asking to be transferred to Shands of Gainesville, FL and they refused so after 14 days of watching my daughter decline I went to hospital admin and told them everything and 5 hours later the charge doctor said we were transferring to Gainesville. Thank God... Aug 23,2013 Upon arrival the Neuro Team immediately saw her and knew it was the shunt and had her back in surgery (11th procedure). She's had some post op difficulties and a lot more swelling then normal. On Sept 18 we had a new Doctor visit and a post op visit back in Gainesville and during her new visit her shunt started malfunctioning once again and we were admitted to the hospital with surgery first thing in the morning on 9/19 (12th procedure). 6 hours post surgery she started getting sick. Nurses thought it was a reaction to anastiesia but I feared the worse and it was confirmed later that her shunt failed again so she went back into surgery on 9/20 (13th procedure)that morning. We got to go home on 9/23 after a 2 day trip turned into a one week stay. Piper started having a collection of fluid once again down her neck and chest as of Friday Oct 4th and we watched it all weekend where it continued to build. On Tues. Oct 8th the collection was so bad it looked like 3 golf balls stacked under the skin up to the shunt valve. Took her into Sacred Heart Hospital at 4pm that afternoon where they preformed scans and confirmed her swelling in her brain. Shands was contacted and they said send her over. It was in the middle of a shift so they couldn't safely send us by ambulance till 0700 the next morning at shift change. We left at 0735 Wednesday after spending the night in the ER. It was a 5 hour trip by ambulance but once we got to Gainesville they tapped her shunt an it was blocked and surgery was scheduled for 0800 Thursday. She's went NPO (nothing by mouth) at about 4pm cause when they brought her a lunch tray 20 mins later she threw it up meaning a side effect of the shunt malfunctioning. They plan on replacing the complete shunt system again (all of it) and placing it on the left side cause the right side is compromised now. I don't know what part he's talking about but will know more after her surgery (14th procedure). Piper went to recovery at 1000 Thursday morning and back to her room about 1115 and she has been resting peacefully ever since. On Oct 13 her shunt malfunctioned that evening and she went in for emergency surgery that morning of Monday October 14 (15th procedure). She came out of that surgery fine. This is her 5th surgery in 6-7 weeks and the doctor has no clue why her body keeps rejecting them. On her 1st birthday 10/23/13 she started to crawl commando style and she received a baby walker on 12/22/13. It took her about 3 days and she got the hang of it and she is now walking everywhere around the house and nothing gets in her way. As of 1/6/14 we are exactly 12 weeks post op. On 1/14/14 she was acting fine a little runny nose from an air born virus plus she is cutting 6 teeth at once and then all of a sudden she went down hill in about 30 mins. She went lethargic, spiked a 102+ temp out of the blue, and her head swelled. Nothing I have experienced with her before. We have always had obvious leakage signs of a malfunction not your typical textbook signs. I was told in the past when the shunt malfunctions it's going the hit her like a fright train hitting a brick wall. Ya you can say that's what happened. Got her to the ER and after 5 hours there we finally got a CT which confirmed that her shunt valve dislodged and the cath came out of the ventricle and was no longer working. She was critical... I was told she needed surgery now cause she would hemorrhage and we would loose her during transport from Pensacola to Gainesville. About midnight 1/14 into 1/15 she went back into surgery (16th procedure) with a smile and waving and blowing kisses. Surgery went great and she came out great. It was a big difference in the size of her when I saw her in recovery a lot smaller but she had lots of facial tissue swelling. She was drinking but not eating much but they were happy and we got to come home on 1/16/14. She's has been surgery free for over a year now. Thank You for letting me share her story.
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