The beginning...

During pregnancy it was determined that our daughter had an omphalocele (a portion of her intestine outside of her abdomen.) She was born at 35 weeks gestation at 7lbs 2oz. and other than her gut, all other organs healthy and functioning. We had hoped that this would be a routine procedure to repair the omphalocele, recover and be on our way home to share Kyra with her two siblings. However, we were faced with our worst fear, multiple intestinal atresia (several areas of blockage throughout the intestines.) Having been through this same diagnosis and ultimately the loss of our first child ten years prior, my husband and I were devastated. We knew now we were in a much better facility and had some knowledge on the developments that were made in the medical field with regards to the gut since the loss of our son. We held onto hope, prayers and the strength of family and friends. After two surgeries it was determined that Kyra had only 9cm of viable intestine. Her surgeons pieced the 9cm together, inserted a stint to avoid the sutures from failing causing another atresia, and again we prayed. Finally after the stint was removed and we saw our first sign of a successful step we could take a small breath and we searched for the patience and courage we would need to tread this path. Overtime her physicians began continous feeds through her stomas, rotating breast milk and ostomy output in hopes to generate intestinal growth. Her physicans also began researching simularities between our first child and Kyra. This lead to the discovery of Kyra's low/absent immune system. As we have now learned your immune system relies a great deal on the health of your gut. The volume of Kyra's ostomy and gtube output is quite large which maybe one of the factors for her compromised immune system. Since Kyra was receiving my breast milk, containing white blood cell, the Lactation Consultant at the NICU set me up with the Mother's Milk Bank of Ohio. This program is EXCELLENT! The milk bank pasturized my milk so that it was safe for Kyra (this small step for them meant the world to me, I needed someway to help my child.) Intra venous immune globulin (IVIG) infusions are administered sometimes weekly to support her defense against potential infections/threats. Due to the intravenous feeds with TPN Kyra's liver was showing signs of distress. Her bilirubin levels were high, with her skin and eyes extremely yellow. The physicians in the NICU were familiar with omegaven (a fish lipid/fat) however this was not currently approved for patient care at the Clinic. As they were going through the painstacking steps for FDA trial approval, Kyra's GI Team, equipped with the knowledge of why omegaven seems so successful, began adjusting her essential fatty acids, limiting her lipids to three time a week, adjusting her TPN windows and before long Kyra was no longer a candidate for omegaven as her liver function improved and bilirubin levels came back within normal range. (Very excited to report liver function still within normal range even after months of TPN/Lipid adjustments.) Days later we were advised that the continuous feeds appeared to be successful as Kyra had shown signs of intestinal growth and there was talk of reconnection. YEAH another breath!!!! However, as most things in life go, one step forward three steps back... as a result of a central line infection Kyra suffered hydrocephalus (water on the brain.) This past Christmas she underwent two neurosurgeries to correct the hydrocephalus and thankfully the second seems to be working. Now recovered from her neurosurgies we are looking at the possibility of a reconnection in March and God Willing a ray of light, and praying for a long awaited journey home.

All in all Kyra is a very happy child. Everyone of her physicians and nurses are truly wonderful, talented, and caring people. It amazes me still how effortlessly they can hold our "heart" and care for her as if she were their own. As parents you have all these dreams for your children which always seems to amount to the same two things: I hope they will always know they are loved and I hope they will always be happy. Well, I know not everyday has been a "happy" day for Kyra but I DO know she has always felt loved!