In August, 2003, we found out we were pregnant. We were so happy to FINALLY be expecting again. We had been trying for 2 years and had previously experienced a miscarriage - so this was exciting. The day before Thanksgiving of that year, at 18 weeks, we went to our first ultrasound. Although we felt like the technician acted a little funny, she told us everything was fine and gave us the wonderful news that we were having a girl! There were no girls yet in our family at that time and we felt so blessed to be having one. That weekend, it took everything I had not to run out and buy every girl item imaginable. I couldn't wait to do the "girl" thing. The Monday following that long holiday weekend, my regular OB called me and asked me if I was alone or if I had family with me. I told him I was at work but on that particular day my Husband was there installing the teledata system for my boss's firm. He then told me that he believed something was wrong with our baby and wanted to refer me to a high risk pregnancy group for a level II ultrasound. He ended with saying it was either something really bad, or, nothing at all. He made arrangements for me to see Phoenix Perinatal Associates ("PPA") the very next day.
When I went to my appointment the next day, they did confirm that our little girl's fate did not look good. She had mutltiple fetal anomalies which included something called "Dandy-Walker". There are a couple of different levels of this. They also told us that most babies who have Dandy-Walker also suffer many other malformations. Which was true in her case. They confirmed that she had a heart defect (double outlet right ventricle), fluid on the brain (cerebellar hperplasia), micrognathia (recessed chin) and the biggest thing being a cyst (cystic hygroma). All of these malformations were related to the Dandy-Walker and they actually ended up calling her case "Dandy-Walker Cyst".
The cyst our daughter had which was caused by Dandy-Walker was on the base of the back of her neck. And because she had developed this cyst so earlier on in the pregnancy it would result in a severe outcome. This cyst ultimately filled her body and vital organs with fluid and she became so edemic that her little body couldn't take it.
For the next 10 weeks, our days were filled with doctor's appointments. There was a specialist assigned to each one of her abnormalities. A cardiologist for her heart defect, a neurologist for the cerebellar hyperplasia, a geneticist to determine the probablity of recurrence in subsequent pregnancies, a pediatrician at Phoenix Children's Hospital, and of course the PPAs who I saw once or twice a week. The doctor's mostly agreed that there would be a spontaneous pregnancy loss - although I continued to carry her for 10 more weeks.
The longer she held on inside of me, the more the doctor's discussed what kind of medical interventions could take place at her birth. Ultimately, they told us that probably no matter what life saving techniques they attempted, she would probably not survive. It was because of this information that we asked them not to attempt to save her life but that they just let us spend what time we would have with her without medical intervention. It was our opinion that we would rather have her die in our arms, feeling our love, then for her to die on a cold surgical table. We did not come to this decision without much prayer, agnozing and uncertainty. Although, when the time arrived for her to be born, Tommy and I both felt very peaceful about our decision.
We felt very blessed to have a live birth with her. The PPAs knew this was very important to us so they monitored me very closely. On January 27, 2008, the PPAs had referred me to Banner Desert Hospital for a series of steroid shots. It was during this time that they hooked me up to the monitor and saw that our little DeLanee was very close to dying and recommended that we do a c-section immediately in order to have a live birth. We asked them if we had time to go home to get our cameras to which they said "Yes - just hurry". We called Tommy's mom in Texas and she hopped on a flight to Arizona. We also called my dad who was on a job in Whiteriver. We were waiting outside the surgery room when they both arrived 3 hours later.
They began the surgery just after midnight and she was born on Wednesday, January 28, 2004 at 12:54 a.m. weighing 4 pounds, 6 ounces and measuring 13 3/4 inches long. Because we had asked them to not intervene, they immediately handed her to Tommy where he and my dad gave her a name and blessing. My dad later said that it was one of the most inspired and beautiful blessings he had ever heard. They then handed her to me to hold as they sewed me back up. After the post-surgery was taken care of they wheeled us back into a delivery room where we spent the remainder of the night with her. Her little heart beat for 3 more hours.
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