What a trooper!

As most of you know Lily has had two and a half weeks of poking and prodding by various doctors. Before she was even 24 hours old Lily was diagnosed with Aortic Stenosis. This is a defect of the aortic valve. Lily's valve seems to be functioning properly but is thicker than normal and causes a murmur. This is something that we will have to monitor closely with her pediatric cardiologist. In the hospital she had EKG's and sonograms to determine that this is the cause. Since she was a preemie, she had temperature and blood sugar tests every three to four hours in the hospital. She was also a little jaundiced and had to go through that test. Lily also had the PKU test and her first immunization while in the hospital. Through it all the only time she cried was when she was cold or the nurse changed her diaper. Before losing the hospital the nurses were concerned that she had lost 7% of her birth weight leaving her at 5 pounds 7 ounces. But she passed the preemie car seat test and her pediatrician sent us home on Friday.
Monday morning we were at the pediatrician's office for the traditional 48 hour check. Here they check weight, get her officially on the records and answer any questions we may have had. She had been doing well and we were officially nervous about the cardiologist appointment scheduled at Scottish Rite for the following day. We were told that Lily was maintaining weight but had not gained any so they wanted us back for a weight check in a week. On Tuesday we went to the cardiologist, where we got good news. Lily was such a trooper. She only cried again at being cold, she passed her blood pressure check, temperature check, EKG. We spoke to one of the nurse practitioners where she spoke in generalities while we waited for the doctor. We then went for a repeat ultrasound of the heart. Lily slept through the entire 30 minutes of the technician taking over 95 pictures of Lily's heart. The doctor then came and spoke to us about how mild Lily's case is and that they don't want to see us until two months. He did stress to us that the thickening will not get better, will either remain the same or get worse. However he was very optimistic and we are hoping to make it through the first year without need of intervention. The first intervention would consist of a heart catherization where they would blow up a small balloon at the valve to make it open more efficiently. They only do this when absolutely necessary so moderate to severe cases. So this is why we pray for Lily's heart valve to remain the same for a while. We were extremely relieved leaving the cardiologist and ready to finish getting the house ready for a newborn. (I had failed in my nesting to complete before the water broke.)
This is when the other shoe dropped. On Wednesday morning, the pediatrician called to inform us that sections of the PKU had come back abnormal. We rushed ourselves to Scottish Rite to perform a blood test and collect a urine sample. Again Lily only cried when they took off her diaper to put a bag on her to collect urine. By the way - impossible to catch urine in a bag and not catch other things too. So after a few hours we called the pediatrician and had them fax over an order for a catheter. We then went a week with nothing new. Just eating, sleeping and pooping for Lily. On Wednesday we were back for our weight check. Lily had gained 11 ounces in 9 days(Yahoo!) The blood test from the repeat PKU came back with all normal levels (Yahoo!) but there was no info on the urine test. It seems the lab at Scottish Rite never sent it in, because it was not enough for the required test. However, they never called us or the pediatrician to let us know that we needed to redo the test. So Lily had to have another catheter and the pediatrician sent off the sample themselves to insure it got there. So now we have another week of waiting for those results. In the meantime Mommy got a flu shot, Grace got the flu sniffer and Daddy got the TDapp shot and a flu sniffer. We are hopefully all vaccinated and will remain healthy for the rest of this year.
We now hope that we are done with doctors for at least two weeks, minus a phone call, and can start some kind of a routine. Lily is still growing, Grace is loving being a big sister and one day I will get all the laundry finished(both Grandmas are trying, but I swear it is multiplying while we are sleeping).