My first blog!

My first blog post! I am starting this blog to share and document "Our Story". My name is Crystal Leon, and boy do I have quite the story to tell! Where to start than the very beginning! I am a Native Arizonan, I was born in Payson and grew up in Tonto Basin. My parents are dad Ray Hill who passed away in 2003 and mom Jackie Morris Drysdale and have a younger brother named Lavell Hill and my dad has two boys from his last marriage and they are Skeeter and Ranger Hill and they live with their parents mom April Ruiz Grant and her husband Shawn Grant. I lived in Ahwatukee in my teenage years with my mom and I graduated from Mountain Pointe High School in 2001.

I met my husband, Richie Leon back in February 2004 when I went to work at Club West golf club as the beverage cart attendant... Yes the Beer Bitch!!... and Richie happened to be the executive chef there. I say, I fell in love at first meal!  By 2005 we were married and had our first child, our daughter Isabell Maxine Leon born on November 23, 2005. I had her at 36 weeks of pregnancy and she only weighed 4 pounds 9.5 ounces. During my pregnancy with her, I had excellent pre-natal care and with a dozen or so ultrasounds performed we knew she was small, and another thing that was closely monitored was the lower amounts of amniotic fluid I had. I know morning sickness or pregnancy nausea is normal for pregnancy, but I was so terribly ill- nauseated all the time the entire 36 weeks of pregnancy. During good moments, I enjoyed being pregnant but I mostly felt so terrible and I really disliked that! When little Izzy was born, she was Jaundice, and we had to put her under the Billie Lights for 48 hours. During that time, she was eating from a bottle but she was the tiniest little thing and I feel like she was just barely strong enough to eat enough to gain weight. After being released from the hospital we took her home and she was the best little thing ever! As she grew, she was always the most happy and content baby but we started noticing that she had some developmental delays and by age 1, I had her evaluated by Arizona Early Intervention. It was determined that Isabell was way behind on her speech, and had some slight physical delays such as low muscle tone and muscle tightness. Also had poor fine and gross motor skills. She qualified for state services including Speech therapy, Physical therapy, and Occupational therapy. We also seen a genetics doctor, a cardiologist and a neurologist. The cardiologist performed some heart ultrasounds called Echo-Cardiograms and we discovered that she has an innocent heart murmur and to follow up yearly. The neurologist sent us in for a brain MRI, which appeared normal. And the Genetics doctor met Isabell and I and thought she had  features and deformalities that suggested to be a genetic disorder. So she sent us for some genetics blood work called a chromosome micro-array. That blood test came back normal, BUT there isn't a blood test for every single genetic disorder and at this point we had no "answer" to Isabell's developmental delays. All we could do is just see how it goes and get the much needed therapies from ST, PT and OT. None the less, we had the most amazing little girl who was happy, and healthy. When she was born, Richie became a member of I.B.E.W. Local Union 769 and joined the powerlineman's apprenticeship program seeking better financial opportunities, excellent health care, and a pension for retirement for himself and his new little family. At that time I was able to become what every mother dreams of, a stay at home mom. I wouldn't call myself a homemaker because during the first few years I really sucked a the housewifely duties!!! BUT I was great at caring for Isabell, and had alot of fun doing so! Always going on outings, meeting with playgroups, and so much more. She even flew with us to Oregon in 2006, and we went on a car trip to New Mexico that year as well. She is a great little traveler! She is now almost 5. She is still developmentally delayed, but making and meeting developmental milestones thanks to AZEIP and DDD.

In September of 2008 my husband got transferred to Kansas for work since there had been a decrease in jobs here in Arizona. He was in Kansas until February 2009 and he was only able to visit home every 6-7 weeks the whole time and I had no desire to take Isabell to go visit some small town in Kansas in the wintertime!  When he returned home in February, we found out near the end of March that I was pregnant! We were so excited, and Isabell was going to be 4 and we were ready for an additional family member to join our household!!! When I went to the doctor at the end of March 2009 to confirm I was pregnant it appeared to be that I was only 3 weeks pregnant. My OB did her initial exam and ultrasound and recommended that I go to a special sonographer to get a detailed first trimester high resolution ultrasound study and that she strongly recommended it to all her patients  for several reasons, one being that it is a very neat experience to see 3D and 4D images of your 10-12 week fetus, and two being that with the incredible advances in ultrasound imaging that now days abnormalities can be detected in the first trimester. She assured me that she didn't think anything looked abnormal in my pregnancy at that point, but that she simply encourages all of her OB patients to go for the first trimester screenings. In April, 2009 at 12 weeks of pregnancy I loaded Isabell up in the car, called my pregnant friend Jena Cyr and asked her if she wanted to join Isabell and I to my first trimester ultrasound screenings appointment at the Fetal and Womens Center of AZ. I told her it would be really cool, and we would get to see the baby in 3D etc, and that we would probably be 30 minutes and then we would go have breakfast together! Well that 30 minute ultrasound turned into a 3 hour ultrasound. The ultrasound techs do not say much, they just perform the scan. And it was taking forever. My poor starving daughter and starving pregnant friend did so well waiting so patiently. After spending so much time getting scanned, the sonographer Dr. David Nyberg came into the room and said quote "I'm afraid I have some bad news, it looks like your baby has Trisome 18. DO you know what Trisomy 18 is?" I kept my calm, but I was thinking Bad news? and NO i do not know what in the hell Trisomy 18 is!! So I told him OK, no I do not know what Trisomy 18 is. SO he explained a little bit, and shuffeled me into an office with a genetics counselor. I was told some incredibly devastating news that day. During the ultrasound scans, there were seeral abnormalities discovered in my baby. The abnormalities fell under the category of possibly Trisomy 13, 18 and or 21. The term trisomy is used to describe the presence of three chromosomes, rather than the usual pair of chromosomes. For example, if a baby is born with three #21 chromosomes, rather than the usual pair, the baby would be said to have "trisomy 21." Trisomy 21 is also known as Down syndrome. Other examples of trisomy include trisomy 18 and trisomy 13. Again, trisomy 18 or trisomy 13 simply means there are three copies of the #18 chromosome (or of the #13 chromosome) present in each cell of the body, rather than the usual pair. Trisomy 18 and trisomy 13 are genetic disorders that include a combination of birth defects including severe mental retardation, as well as health problems involving nearly every organ system in the body. Unfortunately, 90 percent of babies born with trisomy 18 or 13 die by age 1. It is important to note that 5 to 10 percent of babies with trisomy 18 or 13 do survive the first year of life. Therefore, these disorders are not universally fatal and, in the absence of any immediate life-threatening problems, accurate predictions of life expectancy are difficult to make. There are a few reports of babies with trisomy 18 or 13 surviving to their teens, however, this is unusual. So I was told that day that it appeared hat my baby had a devastating disorder, or syndrome and the encouraged option that they gave me was to terminate immediatly. Another option was to have an amniocentesis performed at 15 weeks of pregnancy to do a full chromosome makeup of the fetus. I had a deep feeling that it was not worth it to terminate this pregnancy. I chose the amniocentesis. After waiting a long and depressing 3 weeks for the amniocentesis at 15 weeks, I had the test done and the procedure itself was not that bad! I was so nervous for The Needle! After the test was performed, it took another 3 weeks to get the results! Come on, 3 weeks... this was killing me! All this waiting!  Sometime in early May I got a phone call from the genetics counselor and she said the results were in, and that they were normal!!!!! There was no identifiable syndromes, and that the test also showed the gender XY.... a BOY!!!! I met with my regular OB only to get depressed again. Although there was no identifiable syndroms, there were still some visual abnormalities discovered on the ultrasound scans and that it looked like my little guy was in a lot of trouble. It was detected that he has severe micronathia which means a little or non devoloping chin which can cause major airway concerns for birth. I was told the abnormality was so severe he would most likely require a trach at birth, or to be ventilated etc. I was so overwhelmed at this point that I wanted to get a 2nd opinion. At this time, my regular OB also though it was a good idea to be seen my a high risk group, Phoenix Perinatal Associates which have perinatologists for high risk pregnancies, and neonatologists for after birth and also have the a sonographer Dr. Harris Finberg who is highly accredited in the field of sonography. When joining PPA, I was still very overwhelmed but also felt relieved. I was relieved because after my first appointment, sonographer Dr Finberg did detect the micronathia but him, and the perinatologist assured me taht they would do everything they could to manage my pregnancy which appeared to be high risk for the baby and that no matter the outcome, they would have the necessary specialists available if my little boy needed any help at birth. They deliver at Banner Good Samaritan where the Phoenix Children's Hospital Newborn Intensive Care Unit McDowell unit is located and PPA works in the PCH NICU and that is where my baby would go if he was born unable to breath or with any other complications. I was relieved because now I felt like there were people who would manage my pregnancy and listen to my wants and expectations and encourage me during my high risk pregnancy to know that they were doing every thing possible to monitor my little guy, as well as myself. As the weeks went on and when I was around 20 weeks pregnant a growth ultrasound showed that the baby was not growing very much and at that point I was urged to come in for ultrasound scans, biophysical profiles and growth measuring twice weekly. The baby's delayed growth, and the appearance of the severe micronathia was a great concern to my PPA team. They were afraid that I would go into preterm labor, and that would really really not be good! So the weeks just kept chugging by, still the same scenario each week. Small baby, no devoloping chin and what else? We did not know. BUT I still thought it was worth it to continue with my pregnancy and worth it to monitor my little baby. I had a deep down feeling that I was doing the right thing. I was encouraged by so many people to terminate, and I always stuck to my guns and said no. It was just so overwhelming, and most prople were concerned for me. They just wanted me to be ok, like my mom and my husband. They wanted the stress to just go away and all the worry to just go away. I kept telling them that I felt I was doing the right thing. I absolutely could always count on them to be there for me, and they were not a stress adder to our situation, they just wanted it all to go away. It was so scary all the things we had learned about our baby, and the ugly things he could face. SO at 36 weeks of pregnancy at one of my twice weekly follow ups, we had a meeting. The baby was approximately 2 pounds 7 ounces and was breech. We all decided that the baby had been in long enough, and it was time to get him out to meet him and see what he has to show us. Assuming he would do better out than in! At 37 weeks we had a scheduled c-section. On November 3rd, 2009 William George Leon was born weighing 2 pounds 14 0unces with poor respiratory efforts and was directly admitted to the PCH NICU by Dr. A and RN Jaime Belisle. He was born with the label Extreme Interuterine Growth Restriction (IUGR) with multiple congenital anomolies including 

• Giant Cysterna Magna on brain
• Coloboma on left eye
• Celft Pallet with a weak suck
• Congenital Heart Defects called ASD, and VSD and Pulmonary Hypertension
• Fused horseshoe shaped kidneys with cysts on them
• Hypospadious

All of this, but HE DID HAVE A CHIN! And did not have any airway obsrtuctions and was only on c-pap for 48 hours where he was breathing over it the entire 48 hrs. What a MAN!!! My little FIGHTER! Whoo hoo, celebrate, my little guy was born pretty fragile BUT was OK! With a couple of life saving tricks that the NICU has, we were all fixed up in no time. He has to get an IV for IV nutrition and a feeding tube for eating. He was so small that he as not maintaining his body temp do he had to be in an isolette with warmers so he could grow and get big and strong.  He spent 8 weeks in the NICU and has 2 surgeries during that time. We took him home on Christmas Eve 2009 the best present ever.

William has had several hospitalizations and surgeries and when I get a free chance I will blog about all his hospitalizations and surgeries.

Aside from all the not so fun things such as hospitalizations and surgeries, William is the best little baby boy in the whole world and big sister Isabell, dad Richie and I just adore our little bubba, and he is the strongest little fighter out there.