What's Ahead?

Thursday, April 6th, was a really hard day. After running some tests, including an echo cardiogram for their hearts and a head ultrasound for their brains, we received some devastating results from one of the EOPC neonatologists, Dr. Malik. Both girls had sustained Intraventricular Hemorrhages (IVH). On a scale of one to four, Madeline's bleed was grade three and Cadence's bleed was grade two. Without any explanation, the doctor apologized and said there was nothing they could do. We assumed this meant imminent death for both girls. Jeff and I were devastated. We held on to one another and cried.

Fortunately, the social worker that is assigned to parents of EOPC children had loaned us a book about preemies. We looked up information on IVH and determined that all hope was not lost. We found that many babies recover from IVH without any long term effects. In fact, sixty five percent of preemies that sustained a grade three IVH recovered without any intervention.  What Dr. Malike had meant when apologized and said there was nothing that could be done was, once the bleed has occurred, whatever damage has been done cannot be reversed.  We would have to wait and see what damage, if any, had occurred.

The next day we met with the girls' neonatologist, Dr. Karathanos. We were relieved to find she was able to explain all of the issues clearly without causing any panic. We discussed three major problems.

#1 - IVH - This is actually quite common in preemies, especially those as early and as tiny as ours. Grade two is considered mild and is usually not a major concern. Grade three is watched more closely; doctors intervene if necessary. We were relieved to hear that there are treatments that can resolve this problem, but once the bleed has occurred, the damage has been done. Dr. Karathanos predicted the girls could suffer from a delay in motor development -- walking and talking -- as a result of their respective bleeds. This news was a far cry from our fears of severe disabilities and mental retardation.

#2 - Patent Ductus Arteriosis (PDA) - While in the womb, all babies have a hole in their heart that allows blood to flow without the use of the lungs. When born at term, this hole typically closes with the first breath a baby takes. With preemies, it is common for the PDA to remain open, which allows blood to continue to flow in a direction it no longer should. An open PDA causes difficulties with blood pressure and breathing. In most circumstances, an open PDA can be treated medicinally. A common side effect of the medication, though, is an increase in bleeding. Because both girls suffered hemorrhages, medicinal treatment was not an option. That left us with only one other option: PDA Ligation, a surgery that closes the PDA with a permanent, metal clip. Although the thought of our four-day-old daughters enduring heart surgery was terrifying, it was something we knew had to be done. Without the surgery, Cadence and Madeline didn't stand a chance. So, Saturday, April 8th, our daughters underwent PDA Ligation surgery, performed by Dr. Reine at their bedsides. The procedure is not invasive; a tiny incision is made on the left side, just below the armpit. The surgeon maneuvers between the ribs, lifts a lung, and clamps the hole. Nearly two hours after he began, Dr. Reine emerged from the EOPC to tell us that both surgeries were a success. Momentarily, we breathed a collective sigh of relief.

#3 - Lungs - Due, in part, to the PDA issue, Cadence and Madeline were having difficulty breathing. Because the ventilator can eventually cause permanent damage, it became vital to have them breathing on their own as quickly as possible.