"Excelling in school and making the most of her life" - Kira's Story

My daughter was born November fifth 2009. She has Left CDH, her lung only matured to 25% on the left side. She was at Shands UF for four months six days. The night she was born she was put on ECMO which I knew before hand this most liklely would happen. Extracorporeal membrane oxygenation (ECMO) is an extracorporeal technique of providing both cardiac and respiratory support to persons whose heart and lungs are unable to provide an adequate amount of gas exchange to sustain life. ECMO works by removing blood from the persons body and artificially removing the carbon dioxide and oxygenating red blood cells.

Finally she went in after 5 days of being on this life support system for the CDH repair. Dr. Kays performed her surgery it took 12 hours to complete. He pulled her liver and intestines back down in to the normal range. He closed the hernia with gortex cloth and nylon string. The hernia can occure more then once especially as she grows, the only way to check is to go in for a routine Chest xray yearly to every six months.

Ventricular Septal Defect  (VSD) Along with the hernia Kira also had Ventricular septal defect, There were three small holes (which equallyed made one large one). The heart specialist said, ''her being so young so small there is no immediate need for surgery. Hopefully over time the body will heal itself and there will never be a need for surgery.'' That is excatly what happened. Kira still has one tiny as they call it ''pin hole'' which is what it sounds like when you listen with a stethiscope. Along with this you go on regular twice a year to once a year for a full work up and have a Echocardiogram (Echo) done. There are many many types of heart disease. If you or a family is ever diagnosed with any disease the best thing to do is to search and found out anything you can about the disease. There are many programs and groups you can join to get a little more insite.

http://mendedlittlehearts.org/ http://www.womenheart.org/

G-Tube Mic-Key Because of all the times she we intubated. ((Endotracheal intubation is a procedure by which a tube is inserted through the mouth down into the trachea (the large airway from the mouth to the lungs.)) Kira had a feeding aversion.  She wouldnt take anything PO so much that she was only getting food throught the NG tube.  A nasogastric (NG) tube is a long, narrow feeding  tube that goes through your nose and down into your stomach.)) In march 2010 Kira was put under to have a G-Tube called the Mic-Key...  (((The MIC-KEY  Feeding Tubes are indicated for use in patients who require enteral feeding, are unable to tolerate oral feeding, require gastric decompression and/or medication delivery directly into the stomach. (tube types vary from G, J, TJ/ GJ & GE depending on what your medical professional has prescribed/placed)))

Volvulus A volvulus is a subtype of malrotation, in which a loop of bowel is twisted about a focal point along the mesentery attached to the intestinal tract, that may result in a bowel obstruction A few days after Kira had the G-tube surgery she became very distended, green drainage (Which is infection) was present.  We were supposed to be discharebged the following day and were staying in the hospital in the family room to learn how to properly use the device. She wouldnt stop crying, she had  no BM since the surgery so I called down the supervising nurse to have her tested. They took her down for an xray and come to find out during some point during the surgery a twist in the intestin had formed and needed to do immediate surgery. She was gone for a few hours when she came back to her room she had a silo. (((A spring-loaded silo can be placed at the bedside for coverage and gradual reduction of visceral contents in patients with gastroschisis))Basically This allowed the inflammed intestines to return to normal before they took her back and closed the site.

Kira is alive because of the Doctors and Nurses of Shands UF. She has been though alot and still came out strong, shes bright and most of all full of life. She is now six years old, excelling in school and making the most of her life.

Our story is also on the Ronald Mcdonald house in Gainesville, FL. http://rmhcncf.org/what-we-do/our-families/kiras-story/

olderJake Nelsonolder, ECMO, LCDH