On August 16, 2006 I was diagnosed with a rare condition called HELLP Syndrome. It had progressed so fast my liver had began to shut down and my other organs were to follow. My platelets were also down to 50,000 (normal is 150,000 - 500,000). We were told that I was dying and the only way to save my life was to deliver the baby. (Delivery is the only cure to HELLP Syndrome). I was only 24 weeks along and Emma was measuring 3 weeks behind
in size. The C-section was performed the following morning on 8-17-2006 @ 6:00am. Emma only weight 14 ounces. She did well for a couple of days and than began to get worse. When she was a week old we were able to hold her for a few minutes. She was re-intubated the next day, it would be 2 more months before we could hold her again. She went into Kidney failure when
she was 10 days old. That was the scariest time of my life. We were told after 48 hours they would sit us down and give us our options. We already knew the truth..there were no options, there was nothing anyone could do. Her body was going to shut down. We were devastated. With just a few hours to go before we hit our 48 hour mark the doctors had discovered her blood
pressure was extremely low. There was no blood flow to the kidneys. They started medication immediately. Once her BP was normal her kidneys started to function again. I can not describe the feeling I had when we were told that she was doing great. I remember crying and telling God thank you. He had spared our little girls life. Her kidneys were in "overdrive" for a few
days but then she was back to normal. Over the course of the next week, Emma somehow developed a really bad yeast infection in her blood, which made her really sick. The doctors could not find the source of the yeast. They started antifungal medication, changed
her isolette and even tested my breast milk. They performed an EKG, and an ultrasound of her kidneys. They even had the opthamolagist come in to check her eyes. These were the 3 places a lot of blood flowed to.Nothing worked. Another medication was stared on top of the first, it was also unsuccessful. After speaking with the infectious diseases specialist he just said to continue both medication and eventually, hopefully it would go away. By this time Emma was almost 2 months old and was still on the ventilator. Doctors were afraid to take her off because "babies with infections do not like to breathe on their own". Finally they had no choice. Her lungs were being badly damaged from being on the ventilator for so long. They had already given her 2 series of steroids to try to help them and there was nothing left to do. To everyone's surprise she did great. She was still on oxygen but she was breathing on her own. The yeast
finally went away and she was up-graded to intermediate status. She was moved out of intensive care and was no longer considered critical. We were able to hold her again and finally got to a point where we thought everything might just be okay.
Emma continued to do well for another month or so. She was moved to an open crib and bottle feedings were started. We were actually starting to feel like parents to our little girl. We thought everything was great, life was finally getting to be a little bit easier. All we were doing now was
waiting for Emma to come off of oxygen and take all her feedings by mouth, then they would send her home. This was not the case. During a routine eye exam Emma was diagnosed with ROP (Reninopathy of Prematurity). It was progressing so fast, Laser eye surgery was necessary and performed the next day. After 2 weeks of waiting for the results, we finally got the news. It was unsuccessful. She was now in stage 4 and her retinas were detaching. We
were transferred to another hospital to see a specialist. She said that surgery needed to be performed immediately to save what little vision she still has. We were devastated. The good news was that Emma was doing well everywhere else. She was up to 5 lbs. and was taking all feedings by mouth. But now, after coming so far we were now facing possible blindness. 2 more
surgeries were performed on her eyes ( the first was also unsuccessful ). We came to a point where there was nothing left to do but watch how her eyes develope. Her right eye did great. We were told the ROP was gone and she should have normal vision in it. As for her left eye, she was legally blind. We were happy with the outcome. For a while we were afraid she would
never be able to see how beautiful she is.
We were transferred back to Wake Med on December 22, 2006. Emma came off of oxygen on December 24. For the first time she did great. She was 6 lbs., up to full feeds by mouth and required no assistance breathing. After 4 1/2 months, many sleepless nights, 4 surgeries, more blood and platelet transfusions I can even count, memories I'll treasure forever, memories I
wish I could forget, it was over. Emma came home to us on December 30,2006. She weighed over 6 pounds and was released with a clean bill of health. Today Emma is 6 1/2 months old and weighs close to 11 pounds. Doctors are very pleased with her progress. She does have serious vision problems and has already been given prescription eyeglasses but we are so happy with how far she has come. We spent 126 days in the NICU. Those were the hardest days of our lives, but, we made it through it, all of us changed forever. I truly believe Emma has taught us all something. Never stop fighting and always believe in miracles.
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