Ready to ring in the new year!

It's been several days since I have posted some updates. We have been busy, and we had a very nice Christmas. The greatest Christmas gist this year was to have William home since he has been spending WAY too much time at PCH lately. Since December 18- William has been sick. Here is a rundown since I last checked in and blogged on 12/18...

• 12/18 Saturday---Took William to PCH ED for fever of 104.5, increased O2 needs, and vomiting. Labs were drawn- they were abnormal but not too terribly too abnormal for William. His Urine was clear, RSV swab was clear, his fever subsided but his chest X-Ray showed evidence of a pneumonia. The ED physicians and I discussed the situation. Other than starting William on some sntiobiotics- They did not have a recommended treatment plan. They told me they did not mind at all admitting him for observation, but they also would not mind discharging him so we could go home, start the antibiotics and see what happens!
• 12/20 Monday--- William woke up wheezing terribly. I called his pediatrician, Dr. Berger at 8am and he advised to start a 5 day prednisone steroid burst. I started it at 9am and Dr. Berger said if William's breathing did not improve by 3pm to take him to the ED. William's breathing improved within a few hours- thankfully! So I just decided that he was going to just stay calm and quiet and try to stay relaxed so he didn't have difficulty breathing or have a wheezing attack. He was not feeling great- poor little buddy.
• 12/21 Tuesday--- My sister in law brought my nieces Lydia and Lily over to play with Isabell. The girls had so much fun on Isabells swing in slide playhouse in our backyard. William also was feeling ok, not great- I was still keeping him quiet and comfy. Lydia stayed the night and we had fun playing and making a killer batch of fudge. Richie surprised us that night and got home from California- we were not expecting him until Friday Christmas Eve! Lydia, Isabell and I all went to bed in my big bed and when Richie got home around 11pm, he seen us all cozy and comfy in our room, so he slept in Isabell's room!
• 12/22 Wednesday--- William woke up extremely wheezy and fussy and irritable at around 3:30am. Finally around 4am I decided to give his dose of steroids- and I all along have been giving him his albuterol treatments. He calmed down by 6am, ans we were able to get back to sleep. We all slept in- Richie and I were so tired this day. William did ok all day. the girls and I went out and did some fast and easy Christmas shopping at Fry's gift card center, and went to Target. Later, My sister in law came and picked up Lydia. I went back to Fry's and bought stuff to do some baking, and made some famous candy we call Christmas Crack- It's so yummy and delicious its more addicting than crack!
• 12/23 Thursday--- I woke up at 3:30am with the mind set to give William his dose of steroids before he woke up and got all wound up and throw himself into a wheezing attack. This plan worked out GREAT! WWilliam ended up having as decent day, as we all did.
• 12/24 Friday Christmas Eve--- William woke up early fussy and wheezy. I got up with him and just held him and patted him until he calmed down and went to sleep. Another morning of sleeping! We were again, so tired all day. I called William's pulmonologist now that today was the last day of his 5 day steroid burst and I did not think he was getting any better yet and asked her if she had any recommendations of things I could do here at home. So she said to continue the steroid burst for a full 7 days, and then we will slowly taper him off of them and see how he does. A huge bummer about prednisone lung steroids is that it helps you breath, but it also weakens your immune system. So now I have to be extra extra careful and good at keeping everything cleaned and sanitized, lots and lots and lots of hand washing and my hands are so dry and ouchie!, limiting visitors, and all that fun stuff to try to get him well and keep him well. I have even put several clinic follow ups on hold with our other specialists to keep William home and safe from illness. But anyway- we had a good day and around 4pm Richie went to his Parents annual Christmas Eve family holiday party to go pick up his grandma and bring her to his Aunts house here in Tempe. I dressed Isabell up in her Christmas dress and sent her over to be with the family. then when Richie returned home around 7pm- I went over to the holiday party to see anyone who was still there and get my B-Bell. (Isabell, that's what she calls herself!!) It was a nice day.
• 12/25 Saturday Merry Christmas!--- Had a great day, William was feeling ok- not very energetic and slept quite a bit. Isabell had fun opening gifts, and so did I! Her favorite toy was her light bright from her Great Uncle G! We are so lucky- we were able to make this Christmas extra special and great. We got so many nice gifts as well- we just LOVE our family, they are the best. Richies parents came for Christmas Tamale and Eggs breakfast and we had a nice time. Then Richie started getting our Christmas Ham ready to bake around 10am. My mom, and her husband Tom came for dinner. My brother was here too, and we had a very nice time. Small, low-key but thats the way we had to do it this year and it was the Best Christmas Ever! 
• 12/26 Sunday--- William was still wheezing, the worst in the AM's of each day. He woke up fussy and irritable and Richie got up early at 5AM with him and I slept in until 10AM!!! 5 hours of sleep=AMAZING.  We just stayed home all day- well that's what we always do! Haha, in the AM I asked Richie what he wanted to do today, and he replied.... Well do you wanna stay home or do you wanna stay home?? Haha- that's our only option! But later that evening he did have to fly back to CA- my brother was here so he sat with William while B-Bell and I took daddy to the AirPlane. It was such a bummer for him to go, our Holiday went by way to fast.
• 12/27 Monday--- William was ok, still wheezy. We had a good day, and we had a visit from my Aunt Marsha in the AM and we had a nice visit.,
• 12/28 Tuesday--- William was ok, still wheezy, but I do feel like he is getting slightly better each day. I sent Isabell to the day care center she goes to, and it is closed for the week, oopsie! William had PT with a new therapist today, and he did great. I only let her do some light ROM and other tactics since William is sick right now. He tolerated it very well, including 2 minutes of modified tummy time!
• 12/29 Wednesday today--- William was pretty good today, maybe even getting back to his happy self- a little more energetic and playful. But still wheezy. Tomorrow is the planned day to stop the steroid burst taper, but again I am nervous to stop the steroid. His wheeze is still pretty bad. And I feel like the steroid id helping. So I put in a call to the pulmonologist again today. Our new plan is to continue all I am doing at home, and to continue slowlyy tapering William off the steroid. So that is where we are today. Tomorrow was supposed to be the last day of the burst, but now Monday is our next projected day to stop the steroids. Gosh, and I sure hope he gets rid of that terrible wheeze by then. Somethings gotta give, really! Isabell had good day, and was trapped inside all day due to the rain. I have been busy constantly cleaning, sanitizing, and keeping this place germ free and trying to sneak in some play time with the kids and resting time here and there as well.

Richie should be home on Friday and we are excited to see him- although he is going to the Fiesta Bowl on New years Day with our cousin Anthony and my brother Lavell! But that will be alot of fun for him. I am hoping William will get to feeling a little better ASAP so I can book him another campout at the Ryan House. I am wanting to go back to California.

I am ready for the new year, and I have made a New Years resolution. I feel like I do great at the job at hand I have. But My New Years Resolution is to become even more organized with William's medical ventures- and most of all I have put his health and check ups as priority and I have put Isabell's health and check ups on the back burner. In 2011 I am going to strive to keep up On Isabell's health, check ups, and strive to become more involved with her preschool class. Isabell is such an amazing little girl, and when I say I put her on the back burner this lat year, she has taken it very well. Always just going with the flow, and never complains. She is always smiling her beautiful smile from ear to ear, accompanied by the cutest and sweetest giggle. I am so lucky to have my little B-Bell. She is silly, but a great big sister- she loves William so much. Despite all William's issues, he is one lucky little boy. He has the best Daddy, sister and mommy and we all have So Much To Be Happy About and Thankful For!!! If I don't check back in before New Years eve, Happy New Year Everyone!!!

Merry Christmas 2010!

Leon Family Christmas Letter 2010

We wish you a Merry Christmas

We wish you a Merry Christmas

We wish you a Merry Christmas and a Happy New Year

Good tidings we bring to you and your kin

Good tidings for Christmas and a Happy New Year

Oh, bring us a figgy pudding

Oh, bring us a figgy pudding

Oh, bring us a figgy pudding and a cup of good cheer

We won't go until we get some

We won't go until we get some

We won't go until we get some, so bring some out here

We wish you a Merry Christmas;
We wish you a Merry Christmas;
We wish you a Merry Christmas and a Happy New Year!!!

This year has been very eventful for the Leon Family! As we rang in the new year in 2010, William had only been home from Phoenix Children's Hospital Newborn Intensive Care Unit since Christmas eve 2009. We were still getting used to our new family routine. William was a special added member to our family, and his special needs required some important equipment and monitors. Richie, Isabell and I welcomed our little William and all of his gadgets and we took to him like he had always been a part of us. We loved him so much, and he loved his home. We had our new routine down pat within no time. During the months of January through April, William had about 2 to 3 clinic follow up appointments per week as we were having our medical team monitor and watch his growth and well being very frequently. During this time Isabell was attending her preschool program at WVES. She loves school. While she was attending WVES I was able  to drive her to school each day and drop her off and pick her up. After the month of April came to an end, my medical team and I had made some surgical plans for William on May 20th 2010. It was a routine surgery that turned into a 14 day hospitalization in the Phoenix Children's Hospital Pediatric Intensive Care Unit involving 5 surgical procedures. Unfortunately, William had 1 hospitalization after another with a total of 16 hospital stays since May 2010 and a total of 11 surgical procedures in 2010- making this year a very difficult year to endure. But wit the emotional support, and an amazing group of family and friends- we fought through all of our battles and with the fact of our little William's health still being in a very fragile state, he is making great progress and getting bigger and stronger each day. Also to add more excitement to our busy summer, Richie took a job with Mass Electric in Los Angeles, CA. Our house was for sale in West Phoenix, and sold with a closing date of June 4th. And our new house in Tempe was being remodeled and the remodeling was still in progress when I had to be out of my old house- during my sons hospitalization in Intensive care. I don't know how we got our old house packed up and sold, and moved into our new place and managed all of the craziness- but here we are 6 month later and all settled into our lovely new home. We sure do miss having Richie gone so much, but he is home almost every weekend. And makes trips home when our little William boy is in the hospital. Isabell is in a new preschool this year here in Tempe and is doing great in her preschool program. She gets to ride the bus to school and that is the highlight of her life. Its all about the BUS! Her favorite color is Pink, and she is the happiest funniest little girl in the whole world and can make any ones day a little brighter. I don't know what it is about my little Isabell, but she is the most special, sweetest, cutest little dollface ever. I am a little partial, but I am serious- between her and her little brother I have the sweetest most precious children who are completely amazing and make this life we live true meaning. We truly are one lucky family- despite all these major setbacks!

One thing Richie and I really missed out on this year was spending time with family and friends due to our fragile situation with our little baby boy. We missed out on fun camping trips, vacations and all those spur of the moment things we used to be able to do. Our lives have changed so much this past year, and it has made us so much stronger as parents and as people. We know we will have our day again- we know William will jump through all these hellacious hoops and continue to amaze us all and overcome all of his downfalls and hopefully we will have some kind of a normal life in the upcoming future. We are more than ready!

I cannot put into words how much we love and appreciate all of our close family- without them we wouldn't be where we are today. Our parents are the best ever, and will do anything for us. My mom has taken on such a huge job this past year, pretty much being my back up body. When I fall behind, or need a little help- she is there  before I even need to ask picking up the slack like its nothing. She just does whatever it takes to help us out, and does it with no complaints and always has the best advise and guidance for us. She makes sure we are all taken care of- one amazing lady. To have the loving family we have been blessed with is the best thing ever, and makes us the strong knit family that we are. Thank you all for being the best ever. Another special thanks to my Aunt Tommie and Aunt Josie who have been a HUGE help this year. Thank you for all you ladies do, your both are amazing. And also to the Rummel Family. What a caring, and thoughtful family they are- and have been there for us for several years. We are so glad to have you in our "family" thanks for being the BEST! And many thank yous to all who have said prayers, sent well wishes, and words of encouragement to us through the year. We appreciate it so much! All of our friends and family's encouragement and kind words have made us able to keep on keeping on. Thanks So Much!!!

We are so excited to spend Christmas 2010 her ein our new cozy home. MERRY CHRISTAS AND A VERY HAPPY NEW YEAR TO ALL!!!

LOVE,

Richie, Crystal, Isabell and Willie





Life is testing the patience of the most impatient person!

When I was younger my mom always told me that when I was being created that I did not wait in the line that was handing out patience long enough because I am so impatient! This is so true,  I am the most impatient person and I tend to throw fits when things don't go my way. Becoming a parent to Isabell tought a few things about patuence, but I was still very impatient!

When William was born- somehow someway I became so patient and calm. I had to. To understand and deal with the stress, worry and dissapointment life brought me- I had to be calm and patient. I had to keep myself together so I could learn all about my fragile little 2 pound 14 oz newborn baby boy with multiple congenital anomolies. I had to be positive. In order to stay positive, I tried to just take in all the good things I was surrounded by- my Husband, daughter, and precious little boy who was the sweetest and cutest little 2 pound 14 ouncer ever. My family. My friends. The wonderful and life saving medical team I chose for my son. All these things were and are something to be thankful for, and happy about. So at once, there was no other option but to ride through this mess on a happy, positive, and patient note.

Now one year later. William's health has led us down a path that we had totally unexpected. I guess you can say that about William- we do not know what to expect with him. BUT this time last year we did not for see 15 hospitalizations and 7 surgeries to occur. Most of the hospitalizations have been related to respiratory distress and after 1 year of so much respiratory distress William's diaphragm is weakened and he now is on an even higher flow of oxygen as of November 2010. His lung damage can relate to COPD. The fortunate thing in William's case, is damaged mungs rebuild tissue in the first 7 years of life. So although the damage is done, he has a chance to overcome his respiratory weakness. So when people see me and see my positive and happy image- this is why. Its because I have to be- there is no other way to be other than miserable and I do not want to be miserable. Again, we have so much to be happy about and thankful for. Each and every hospitalization does take a toll on us as a family, but for William we will do anything. Richie and I have said a million times- if we could take on all his health issues we would in a heartbeat so he didn't have to have another surgery or hospitalization. But on the upside, we have the tougest little boy I have ever met, and he is such a fighter!

Today, we checked back into Phoenix Children's Hospital as William spiked a fever of 104.5 and was congested requiring more oxygen. His body is too weak to overcome illness at home. Especially if he has an underlying issue causing the symptoms. This is when the hospital becomes our best friend- to draw labs, and determine if he has an infection and to check his overall blood enzymes. This will tell us what to treat, and if he needs any special fluids or antibiotics intravenously.

So we were home for 1 week with the little buddy. It has been a very overwhelming week because Isabell is sick with a terrible cold. Keeping William isolated from her is impossible. I had to keep her home from school all week, and her attention span was as long as a toothpick. And she had a fever, has a terrible cough and runny nose. With her lack of attention, she would just roam all around the house whining and coughing and wiping her nose and wiping her germs all over the house. I kept William on lock down- up elevated in his crib at all times trying to keep her away from him. BUT everytine I would turn around she was near his darn crib trying to see what bubba was up to. It was hard because she was not in trouble, but I had to keep getting on to her about staying away from bubba. And this was hard for her to understand. Usually she is allowed to play with bubba all day and all of a sudden she was feeling icky and mommy kept yelling to stay away from brother. So on Wednesday Isabell was getting worse and I had gotten so overwhelmed and my patience was non existent. I had to call for help from my re-enforcements. My hubby flew in from CA and my mom came rushing over. And on Thursday Richie flew back to CA but my brother's job got snowed out up north and he has been home which has been nice.

This morning we were having a good morning, and William was feeling good and playful until 9AM when a fever of 104 and vomiting hit him like a Mack Truck. He had a real hard time settling down needing more oxygen and that is what led us to PCH.

All his labs are looking ok right now, and his cultures are still pending. Still waiting on urine. At this point, we are looking like we are homeward bound, in hopes for him to feel better.

I will have more updates at a later date!

Crystal





“Patience is the ability to idle your motor when you feel like stripping your gears.” Barbara Johnson

Home is where the heart is, WHY are we back at PCH?

The kiddos and I have had a great week at home. William discharged from his 15 day hospitalization on Monday 11/29/10. Although his RSV swabs and labs were negative for RSV, we were convinced that our little buddy had a cold. When we dc'd, we were sent home on a higher flow of oxygen then he had previously been on- now on 0.4 LPM. Since Tuesday, I have had to increase William's flow to 0.5-0.8LPM. He hasn't been congested, or wheezy and I have been giving his albuterol as needed. I spoke with his pulmonologist yesterday and she suggested to give William 2 puffs of his inhaler every 4 hours for 24 hours- bringing us to Saturday, today. And if that worked, to continue for another 24 hours- bringing us to Sunday and then stop the inhaler regimen and see where his O2 requirements are at. So I started the albuterol regimen at 3PM yesterday, and it helped keep his oxygen saturation's above 95% at 0.4 LPM. Woo Hoo.

Later yesterday evening, my mother in law, Phyllis brought some delicious take out from one of my favorite local mom and pop bar and restaurant, Macs Broiler and Tap. They make homemade soups everyday and Phyllis picked up a few bowls of Chicken Noodle soup and sourdough bread. Isabell, Nana and I enjoyed our soup and Isabell went home with Nana for a sleepover at her house.

William and I were enjoying the peace and quiet so much, that after I gave him his 9pm round of meds, we went to sleep! Then i woke up at 2am, to William grunting in his bed. So I got up and checked on him to discover that he was burning up. I took his temperature and he was 103 degrees. His other vitals were normal, so I undressed him, put a cool cloth on his forehead and gave his some tylenol. His temp decreased and we went back to sleep by 4:30am. We then woke up around 8am. He was still a little warm, but his temp was reading 99.6. I thought he was calming down, so I put him in his swing this morning and was going to plan on having a nice day at home. After an hour or so, I looked at William and his face was bright red and he felt so warm again. His temp was 103.7. So now he has two things not looking so good- needing more O2 and a high temp. I was so bummed, but I knew he needed to be seen by a doctor. He is so medically fragile, that I cannot take a risk or chance of trying to let William recover at home. He has such little reserve, and with his upper respiratory issues it is always best to have blood labs done, and chest x-rays to try and avoid and/or treat any pre-pneumonia's or pneumonia's. Or any respiratory illness, for that matter.

We arrived here to the PCH ED around 12 noon. We have had blood drawn (IV in the center of his forehead), and x-ray already. X-Ray showed left lung looks like a little pre-pneumonia- and the signs area ll there. Moving less air in his lungs, increased heart rate, compromised breathing- and just got done trying to fight off an upper respiratory illness from last week! The Ed doc just started some IV antibiotics in his IV. Poor little man has has one hell of a year. His blood labs are not back quite yet, but should be any minute now. We are getting admitted, but I am not sure where we are going yet. I hope William is stable enough to stay out of the PICU this visit!

I feel like we will struggle through this winter, upcoming spring and fall- possibly even next winter with William. I feel like he will fight through any severe respiratory illness, but he is so very fragile and has such low reserve. He needs a good 6-12 months to build a stronger reserve, and make his hospital visits further apart! The bad thing, is when he is here in the hospital fighting off illness, he is not building any reserve. He builds strong reserve when at home for extended periods of time, and William hasn't had an extended time at home since before May- spending most of the summer in-patient at PCH for surgeries, battling illness and more surgeries.  He will get big and strong if he could just make it through the next 6-12 months of battling respiratory illnesses.

Ok, more updates later- I am going to hunt down the doc and discuss William's lab results and plan of care at this point.

Back to the old swing of things....

I busted William out of the Hospital today, and brought him HOME! He was so more than ready. We arrived home around 2pm, and I just love jumping back into our home routine. We sure are missing daddy and what a bummer he missed William's happy homecoming after our 15 day PCH stay.

Last I blogged, we were still in the PICU. On November 23rd, William was transferred to the floor- still needing more than his usual baseline of Oxygen. He was feeling good, and all his labs were great. Our plan was to monitor his breathing, and ween him to his baseline and send him home. Unfortunately, the hospital monitoring continued through our Thanksgiving weekend.

Richie got here on Wednesdayay evening, and Isabell was SO excited to see him. We all took a family trip to see our little William as soon as Richie arrived. Willie loves his family visits in the hospital. On thanksgiving morning, Isabell went to my moms with my brother and Richie and I went to PCH and spent the AM with bubba, and went to my moms for a delicious Thanksgiving feast and to spend a little time with family. It was a nice day. On Friday and Saturday Richie and his friend Terry assembled Isabells playhouse and swingset Swing-In-Slide playset in our backyard. It is so awesome, and Isabell loves it so much. I love to see her so happy, and full of so much excitement. Richie and I do not spoil her- none at all! She deserves it, such a wonderful little girl. Then we were sad to see Richie leave on Sunday, he had to go back to California.

then today tolled around and William had been doing so well over the weekend while at PCH. I really felt like everything we were doing at the hospital at this point was what I could do at home. William is still needing a little higher flow of Oxygen than our home baseline, but I hope to ween him to his baseline here at home. My team of Physicians also agreed, and said take the little dude home!

We have had such a great night here at home. Isabell said her mommy and bubba are HOME. I got my Christmas tree up yesterday, and we did some more decorating tonight. then Isabell crawled onto the couch and fell asleep. She went to Day Care preschool this morning then to real preschool this afternoon and is completely tuckered out. William has been asleep but is one happy boy.

Kids are ticked into bed nice in tight, and I better join in! We have a clinic visit with or PCP and William;s synigis vaccine tomorrow- so like I said, Back in the swing of things!!!

8 days, and still sane...

Trying to keep my sanity here at PCH on our 8th day in the PICU. William is doing well, we are still in the PICU because William is still requiring such a high flow of oxygen, his CO2 gases are still decreasing to the normal range, and needing close respiratory attention. Being in ICU is great during William's fragile recovery because there is a doctor sitting outside our room at all times. I am so thankful for the team of intensivists that have cared for my son. Their excellent expertise has led my son down the road to recovery! I know we are still in ICU, but making progress to graduate out of ICU, recover a little longer on the "floor" and then home! 

I brought William's little infant swing from home yesterday, and he spent most of the day in his swing. He is feeling so much better, and I know he was wanting to get out of that crib. Someone needs to donate like 1,000 new baby crib mattresses to PCH that aren't so dang hard!! 

Little man was able to come off the Low Flow O2 Blender, and is on regular nasal canula at 1LPM. He has been a bit wheezy since we put him on the regular canula. We will see what his gases look like here a little later and if he is holding his gases then we are good, and if not then back to the Low Flow we will go. He is on his home feeding routine, and tolerating his G-Tube feeds great. 

Side note, kudos to our nurse. She is caring for William and a critical kid next door who sadly passed today. I have no idea what the details are, but to see Bree hold her composer for that baby and the family absolutely amazes me. She gave me a to the point explanation as to why she has been in the room with the family so much today, and apologized that she didn't get to spend much time with us. (side side note, still don't think this is fair for William that he has been neglected, as he is just as important if not MORE important than other patients! Yes I am a little partial!) Luckily I am here to hang with my little man, and change his diapers, every time I leave and come back he has poop. That makes me mad. Every Single Time! But no doubt, I respect our medical team so much and think they are amazing. When I voice my concerns, they do listen and I make sure my wishes are met. 


Tomorrow is my Isabell's 5th birthday! What a big sweet awesome beautiful little girl I have. Always smiling ear to ear, and being a nerd! We are going to celebrate at our Friends Rich and Shannon Rummels house. Isabell loves it there, and I am so happy that Shannon is having us over. She's the best! 


More updates later!

Busy day, eh?

 

Isabell had a follow up with our cardiologist today. Just over 2 years ago, she had an echo cardiogram and we found that she had a PFO (Patent Foramen Ovale) and also discovered she had an innocent heart murmur. I was sent home and was told to follow up in a year or two. So today was the day. She was seen by Arizona Pediatric Cardiology's cardiologist Dr. Bryan Sandweiss. William is seen by Dr Erik Ellsworth with the same group and I really like him. Dr. Sandweiss's availability is not that open, so I decided to have Dr. Ellsworth see Isabell. First of all, our appointment was at 12:30PM and we did not get out of there until 3PM and Isabell was an Angel. Tolerated her heart ultrasound so well. She kept saying the doctor was looking at her heart, it was so cute. SO after Dr. Ellsworth got all the images he wanted, we had a sit down chat session. He first told me that her PFO is closed!!But also explained to me that it appeared that she has what is called an Aortic Ring. This condition is hard to explain, but she will be getting a CT scan so we can get images of all her blood vessels in her chest/heart. In most cases a CT scan is able to capture the images needed to asses the abnormality, but in rare cases it does not work and a chest MRI would be ordered and that requires anesthesia. We would like to get our testing results from the CT scan because she dies not have to go under. She will be getting that CT scan in 2-3 months. NOW when we et the results of the scan, and see the severity of the deformality, a surgical repair will be in order. I asked if it would be an open procedure, and Dr. Ellsworth said most likely will not be an open heart surgery because it will be repair on the valves, not the heart itself. Dr. Ellsworth is very concerned about this condition, but we have time for repair without rushing into things. 

I am very nervous for this because I sure hope I have chosen the right cardiologist for Isabell, and William too. I really like Dr. Ellsworth, and as far as I really feel... Ultrasound images don't lie. I know he is perfectly capable of explain to me the findings he has found on the ultrasound images. The surgical procedure itself is performed here at Phoenix Children's Hospital, and that makes me feel at ease that she will be taken care of by the most talented surgical hands that Arizona has to offer. It is hard to just up and change or get second opinions from pediatric cardiologist's, as many are not taking new patients or have a long scheduling wait time. I don't have anything telling me to go seek a second opinion, just find myself HOPING that we are doing the right thing for Isabell. Richie said, geez if its not one kid it's the other! 

Richie got in last night about 8PM and was able to spend alot of quality time with his boy while Isabell and I were in clinic seeing the cardiologist. They even took a nap together while watching TV. Then after Isabell and I were done, we took her to Lowe's and purchased her playhouse, swing and slide set! She is so excited, and then we went to dinner at one of my favorite mexican food places, Si Sinor in Chandler-they have the best chili rellenos and margaritas! 

My Aunt Tommie came down to my house yesterday and stayed the night so she could help with Isabell and also do some shopping! Then after we were done with dinner she took Isabell with her back to Payson! My mom is going to go get her on Sunday! I am so excited because she gets to play with some cousins, and my brother has been working in Payson and staying with my Aunt Tommie and Uncle Ron and Isabell gets to see Uncle Vell! 

Then Richie and I came back to the hospital to see our BUBBA! Richie had to say goodbye to the little man and scram back to California for a busy weekend of work. He will be back on Wednesday for the Thanksgiving Holiday!  

All is well here in the PICU tonight, William is not really tollerating it when his O2 is weened, so we have just left the low flow oxygen blender at 4LPM @ 40%. I hope tomorrow is a good day, and that he tolerates a decrease. Until then, he is just stealing all of the PICU Pod D's hearts and everyone keeps saying how sweet and cute he is. And how happy and content he is-Until they have to do Deep Suctioning! He is NOT a fan of that. Such a blessing to have my little masterpiece, my little William George Leon.

Day # 6 in PCH PICU

William update!

We are still here in the PICU at PCH. William is feeling a little better, and is just the sweetest little guy ever. Last night, Richie came home, and my mom stayed overnight with her WIlliam so Isabell and I could have some daddy time. Grandma just can't stand him being here all alone. It's so awesome, her and William have such an amazing bond. I ma glad she was here with him, because his scalp IV went bad overnight, and IV team had to come and try to poke him for a new IV and he cried. So I am so glad grandma was there for him. 

We do not have any true evidence to prove what is the cause of William's respiratory distress that he is experiencing, requiring this ICU stay.... but we are convinced that it is a virus. All of William's RSV screens have been negative- which means we cannot identify a virus. But the RSV screen doesn't screen for every single virus and/or germ. William is just so fragile from a respiratory standoint, is asthmatic and if he is exposed to the smallest germs, it has proven to be lethal to him. He does not have much reserve, and when he gets a cold, his lungs are just not strong enough to recover on their own. He is on a lung steroid, and is still on a high flow of oxygen. Each time we try and ween his O2 down, he does not tolerate it. His labs have been decent for the past few days, but a few things are slightly off here and there... like today his potassium was elevated so he got a dose of lasiks to help get rid of some extra fliud and see if the potassium will go back to normal. Luckily his CO2 levels have been getting better and better. I have to tip my hat to the ICU team we have had this past week, they have listened to me, assessed William to the fullest extent, and together we have created the current treatment plan and goals for William, and together we have stabilized my little buddy and are seeing improvements. The main goal we accomplished thus far- Staying off the vent! It was a scary and questionable day on Monday because we weren't sure if William would improve with other interventions for his respiratory distress. The ventilator would have helped him breath perfectly (because it would be doing the work for him!) but one huge concern is that if William goes on the vent, as fragile as his lungs are he may become dependent on the vent and we might have a hard time getting him off the vent. His lungs might love the "help" so much, that we would run into extubation issues. If this scenario ever does occur due to William falling into respiratory distress requiring help from the vent, and we cant get him off the vent we would look into the options of inserting a trach into his airway. SO this winter flu/rsv season is really going to be one hell of a season for us, and we hope that we can nurse William through the rest of the season without any scary hospitalizations. Get our little man a little bigger, a little stronger, build up some reserve!


Side note.... I have met a really nice mom, named Sandra and they are here with thier little 5 year old, Princess Mia who is battling brain cancer. They also have 2 younger children and they need lots of well wishes sent their way. Also want to ask all my friends and family to send out well wishes for another family we know, the Morton's. Their little Jack is battling stage 4 Neuroblastoma, and as Jack's mom says- Jack is karate chopping though this awful disease like a champ! Way to go Jack, but they still need lots of well wishes sent their way. I seen them this morning, and they are here waiting for Jack to go through some more testing. When Iseen the cute little guy, he looked at me and said "HI!" all cute and it was so cute.

Richie has to drive back to California tonight, and has to work tomorrow (Saturday) through Wednesday and will be home Wednesday night for the Thanksgiving holiday. 


Isabell will be turning 5 on Tuesday, and I am so bummed that William has been in the hospital becasue I have not had a chance to plan a birthday party for her. I am hoping I can concoct a plan for her- she deserves a fun birthday celebration. She is the best daughter, and always so happy and full of life. Smiling from ear to ear and always lighting up my world. I can't believe she's 5 already! She loves cake so much, and I'm excited to have a birthday cake for her. We are getting her a big wooden playset/swingset for our backyard for her birthday but it wont be put together until next Friday when Richie can put it together.

Admitted to PCH PICU 11-14-2010

William was still having some breathing issues, requiring more oxygen, high heart rate and just was not himself. After trying to manage his issues at home since Friday 11-12-10. I started a lung steroid boost on Friday afternoon. On Saturday 11-13 He did well all day, and I was even able to ween him down on his oxygen from 1 LPM to 0.5 LPM. Friday night, overnight, was tough. William wheezed and tried to cough all night. Overnight Saturday night we also had a rough time and I had to go back to 1 LPM on his O2. Sunday AM on 11-14 he had improved and I was able to ween him back down to 0.5 LPM. I just didn't feel like he was improving overall. From our two previous nights, I discovered that William seemed to get into trouble in the evening/night. I was afraid for Sunday overnight at home. I paged William's pulmonologist, Dr. Drewek. Her and I thought it was a good idea to take him to the ED to get checked out by a doctor. When we arrived to the ED, IV team came and started a line for IV fluids and labs. When the labs returned, it showed that William's CO2 levels were high indicating that he is retaining CO2. The ED team thought WIlliam really needed to go to the Pediatric Intensive Care Unit. They explained to me that one way to level out the CO2 is by putting him on the ventilator. He has pulmonary hypertension, among a long medical history. We felt it was best to go to the PICU. PCH PICU has an amazing team. When we got settled into the PICU and the PICU team evaluated William and his history. They explained to me that kiddos on chronic O2, as William is can retain CO2. They had respiratory draw blood gases throughout the night. All of his RSV labs have come back negative so far, so no pin pointed virus. They got William all settled in by 7:30 PM and there was no plan to Ventilate William, just a plan to keep him quiet and calm for observation. SO I was able to go home and I got 8 hours of sleep! I feel like a new woman! When I returned to the PICU early this AM 11-15, William was sill sleeping and doing well. His night burse who I really loved, Joslin, gave him a bath and put some pajamas on him that I had brought along. Joslin cared for William back in June and she said he was so much bigger! William is also quite the ladies man, and with all these pretty ladies working here at PCH, William is really able to work his charm. Each and every one of the staff always tells me what a cutie William is and that he is their absolute favorite. He is always so happy, and never fussy. I am sure it's nice for a change, because most patients are sick, unhappy, miserable, in pain, afraid of the medical staff etc. NUT not William, he loves his entire medical team. There are a few people taht have been involved in William's care that have not been my favorite- But I still respect them all the same, they care for my child and I couldn't ask for better care. SO this morning, William is resting and doing well, but we are waiting for his stool studies to come in and trying to figure out why he is working so hard to breath, therefore requiring more O2 than normal. The doctors are rounding, and should get to us momentarily. I will post an update later!! 


ALSO, Richie and I manage our current situation very well, yet it is very much a hardship on us. Dealing with all of William's medical issues, & caring for Isabell while Richie is working in California and providing the very best for all of us is not easy. I know that Richie wishes he could be here more, but I am so proud of him for all the support he offers and all he does for this little family of his. He is really the best father and husband, and is such a great family man. We are so thankful that he has the job he has. He is became a Forman for his company a few months ago, and with that position took on alot more responsibilities at work. We knew this when he accepted the position and we felt it was a great honor that the company offered him this position and took advantage of that.
We have decided that he will only come home if things are not looking real good for William when we are in and out of the hospital. Otherwise he is home almost every weekend-BUT they have been working the past few weekends to meet some deadlines on the LA LiteRail. He will be home over Thanksgiving, and we are so excited to see him. Tomorrow is his birthday, and I want to wish him a Very Happy Happy Birthday, we have so much to be happy about and thankful for.


TTFN! (Ta ta for now!)


Crystal





 

Change in the weather, or something in the air?

It's been a rough couple of weeks for my poor little William! He really just can't catch a break. After our long summer of 7 hospitalizations and 5 surgeries, we thought we would all catch a break. Especially hoped that for Willie. Unfortunately on Halloween William started having trouble breathing and our Asthma Plan medications of flo-vent and as needed albuteral were not helping William and he was wheezing terribly and working really hard to breath. He is on oxygen at 0.2 LPM and I have a pulse oximiter which measures the oxygen levels in his body and an apnea monitor that monitors his breathing and heart rate here at home. These monitors are great because I can do almost everything the hospital can do for William here at home except for deep suctioning! So when he started having troubles breathing on Sunday morning, it was after we had cooked some bacon for breakfast and the house got kindof smokey and the smell was very strong (yummy, but too overbearing for Willie I'm quite sure). So I took William outside to get some fresh air and he was ok for a little while and then he started wheezing so badly. So I hooked him up to all his monitors to see where he was at and took a set of vitals. His chest sounded so tight, and he was barely moving any air. He was well hydrated. He had a fever of 38.0. He had been experiencing diarrhea since 10-11-10. His heart rate was a little high and he was only taking like 15 good breaths per minute at that point and usually does 25 to 30. And his oxygen levels had decreased to 82 and it's best to be 90%-100% oxygenated. I was able to go up on his O2 LPM from 0.2 to 0.5. and got his O2 levels back in the 90's. BUT as each 15 minutes would pass, his O2 levels would drop and I kept going up on the O2 flow UNTIL I had reached the max flow that I have at home which is 1 LPM. My travel tank concentrator goes up to 2 LPM and after I had him on a full liter of oxygen it was time to take him to the ED. I tried to get my husband to call 911, but he said NO, just hurry up! So I hooked William up to his travel O2 tank and put him at 2 LPM, and I took the pulse oximeter along. So away we went at 90MPH down I-10. William's O2 levels were in the 90's all the way to the hospital, and as soon as we stopped in front of the ED his levels started dropping and by the time I ran into the ED with him he was 50% oxygenated and was very very blue and lifeless and I ran in yelling to see a doctor and the staff directed us right back to a room and a crowd of several doctors, residents and nurses immediately start their amazing life saving skills. Since William has a very long medical history, I carry a 4 page printout that I created to hand off to the medical staff when we arrive and I also read off his medical history as they are assessing him so they are aware of the giant cysterna magna fluid filled space on his brain, his cleft pallet, his G-Tube feed needs, his pulmonary Hypertension and that it is caused from an ASD that he has, his fused cystic kidneys, his hypospadious and that he is a difficult cath. Also that he is a hard stick and I only let IV team poke him and if nobody is available from the IV team I make them find someone that has worked NICU or IV team to perform the stick for needed labs. And after we all got William stabilized with a prednisone burst, aggressive respiratory treatments with deep suctioning and a very high flow of oxygen at 8 LPM he was admitted. He recovered very well, and we were discharged on 11-2-10 just in time for his 1st birthday on the 3rd!. We had to continue the prednisone burst for 7 days. He has been doing really well. We have had quite a few clinic follow ups, and that means the more outings we go on or whenever we have numerous clinic follow ups, he is at risk to being exposed to lethal germs that his body has a very hard time fighting off. So I dread follow ups, why can't they just do house calls!! haha. After facing and conquering most of William's medical issues I decided that it was best to keep William in his home environment and to limit our car outings to follow ups ONLY to keep him healthy. He does not have much reserve, and he has spent so much time in the hospital, had so many surgeries that his poor body is really needing to build up some reserve especially for this winter's RSV/FLU season. We only have limited visitors and if anyone is sick I ask that they don't come over. We do not take him out in crowds, or supermarkets. No taking him out for a nice meal at a restaurant, no visiting grandmas. Although my Isabell goes to school and is exposed to school germs we try our best to keep our safe home environment germ free. When she arrives home from school, she has to get undressed and take a bath before she roams the house or even thinks about going near baby bubba. After all the hard work of keeping him at home, it seems that his asthma is going to give us hell. And his weak diaphragm doesn't help with his asthmatic issues. Now after cooking something that is smelly, or if there is pollens in the air he starts wheezing. After our weather change from hot to cold here in Phoenix, it also seems that the weather change has a slight effect on his little body as he has a runny nose as of yesterday 11-11-10. He had a rough night overnight. I woke up this morning and put in a call to his pulmonologist Dr. Drewek to explain that he was wheezing terribly again and I was quite concerned. Her and I came up with a plan. She called in a Prednisone steroid burst script to Walgreens and when his oxygen levels started decreasing a few hours ago I was able to start the burst. I am so thankful that my mom and Aunt Tommie were here today. They were such a great help, especially with Isabell. I also loved that my Aunt did all of our laundry and cleaned my kitchen! What a help! I was starting to get overwhelmed with the house duties because laundry was piling up, and I had destroyed the kitchen! I was also able to run a few errands by myself and that was nice. I don't get out much. Caring for my fragile baby bubba is an all day all night job and requires ALOT of dedication. And when he has asthma troubles, my job becomes way more intense. He gets medications several times a day at certain times, and is tube fed. But there is no question, I have dedicated myself totally and completely to my daughter and my son. They are both special needs, but William was faced with the medical issues and Isabell has been pretty healthy. Some say this is my calling in life, and I couldn't agree more. I have a vision that William will build up his reserve in a few years, and will be running and playing with friends and you'd never know the hardships he faced. I really see that in our future. Until then, I am keeping him as stable as I can and doing everything possible to keep him that way. Got the HEPA filter running, and a steady stock of hand sanitizer and clorox wipes. SO a little favor to ask of everyone, please keep William and our family in your thoughts and send us lots of Stay Well wishes because we all need it! 


XoXo

Life in the PCH NICU 11-3-09 to 12-24-09

At 12:14PM on November 3, 2009 our William George Leon was born via c-section weighing 2 pounds 14 oz and just 14 inches long. He was admitted to the PCH NICU immediately after birth for poor respiratory concerns among other concerns. This was the scariest day of my husband and I's life. When William was born he was taken to the NICU and being that I just had a c-section and lets just say I was not feeling great so I didn't get to see much of my little baby, but I got to wave to him as he was taken to the by our high risk delivery NICU nurse and neonatologist... and of course Richie went with William to the NICU and I had to go to a surgery recovery room for a while. After the NICU staff took a good look ant William and got him all set up in his NICU suite Richie came to my recovery room to give me details! He came in the room and with a tear in his eye, he told me there were alot of things wrong with our little buddy but that the doctors and nurses were working away on him. I was dying to know what all they were doing for my baby.When he was taken to the NICU, the nurses and doctors immediately got him hooked up to necessary monitors, started an IV. He had ultrasounds performed on his brain, heart and abdomen. He had basically full body x-rays. And they examined baby William from head to toe. This is how they discovered his multiple congenital anomalies.

 After I got situated in my hospital room after the c-section and was doing good (like 4 hours later) I finally got to take a wheelchair ride to the NICU and meet my baby! When I got to meet William I was shocked that my amazing little baby was such a fighter and boy was he the cutest little 2 pounder in the whole world. He just totally melted my heart. At that moment, our learning experience started. We knew nothing about the conditions William was born with. But Richie and I thought William was the most amazing little creature ever and wanted to learn all about him, and be 110% involved with the care he received in the NICU. Anytime I learned a new term or learned new things when caring for baby William I was constantly asking our nurses and doctors questions, or researching it online. 

As I held this 2 pound 14 ounce baby in my hands, with all these cords and tubes attached to him and the most amazing nurses and doctors caring for him- I just knew he was going to fight through all he was faced with. 

Although William had all of his special tubes and monitors attached to him and had to stay in the heated isolette most of the time to maintain his body temp- we were encouraged to open the isolette port holes and touch and talk and interact with our baby boy as much as we wanted as long as he continued to be stable and was not getting into distress from the stimulation. Luckily he did well wit the interaction and stimulation, and him and I had the most amazing special bond. He is for sure a mommas boy and has been since day 1.

November 7, 2009 - First Surgery 4 days old

William was a hard stick and he was receiving IV nutrition. His IV kept blowing out his veins and his nurses were having to stick the poor little guy a few times daily and that was so terrible. After multiple blown veins we came up with a plan, to place a central line. Its a deeper stick, and there is a special team at PCH called the IV team and together a IV team nurse and NICU nurse Jaime tried to place that central line by hand, and I am not kidding... they tried for an entire hour to get the job done without success. Our only other option was to have a central line called a broviac surgically placed. In order to do this he has to be transferred from the PCH McDowell NICU to the main PCH Thomas campus NICU. Also had to be intubated for the surgery as they cut 2 small incisions and insert a catheter tubing into a deep vein to receive IV fluids and nutrition with ease! So we took an ambulance transfer ride to PCH Thomas NICU on Saturday November 7th, 2009 around 3 pm, and surgery was at 4pm by on call pediatric surgeon Dr. Craig Egan. I knew nothing about Dr. Egan, but I am now so very thankful that he is William's pediatric surgeon, as he has performed multiple surgeries on William and is an amazing surgeon and we just love him. We also met more amazing NICU staff at Thomas NICU. That day, PPA NNP Camilla Miller was on and after meeting her, I just fell in love with her. Funny story,  we introduced her to William, and I told her his full name, WIlliam George Leon, she looked at me with a look and said your kidding me because her fathers name was William George Labe. From that day forward, she fell in love with her little William George and I felt like we had a fun personal connection! I also met all of the other PPA neonatologists and NNP's and love them every bit as much as well. 

When William was a week or so old, every so often he would turn bright red in the face and his arms would stiffin and slightly shake and it looked like suspicious seizure like activity and we were all concerned. So William had to get and EEG test performed. It looks worse than it is, but he was perfectly fine. They just have to stick a bunch of electrodes to his head and to make them stick in place they wrap his head in gauze and monitor his brain activity on computer and also video record him. Thank goodness the tests came out normal and the suspicious like activity was just William's way of crying or showing that he was upset.

One day when I arrived to the NICU to be with my little bubba, nurse Kelly Ackerman was having fun playing with and entertaining my sweet little guy. She got him a book about puppies and put one of his stuffed dogs atop his isolette. She must have worn him out playing with him!

Another time I called in at night to check on my little man and nurse Katie Bell was caring for William and she told me he was doing great that night and he was actually on a bear hunt. I was like bear hunt? And she told me that she dressed him in his camouflage gear and got out his beenie baby bear, fox and lion and her and the other night nurses were leading William on a NICU bear hunt. This was the funniest and cutest report I got on William. It was so hard having my baby in the NICU for 8 weeks, and I wasn't able to stay there 24/7 and when I was home at night and missing my baby and I would call in to check on him before bed, in the middle of the night or early in the morning I always felt so lucky to have such amazing NICU staff there at PCH caring for William. They truly love their babies and I know they really loved their little William.

We had alot of visitors during the 8 week NICU stay. My mom visited nearly every single day! All of our family was very supportive of our situation, and were always a huge help with caring for Isabell. I was able to spend ALOT of time in the NICU and therefore was able to stay completely involved in William's NICU hospitalization.

PCH NICU also has such an amazing staff. They are all so caring and compassionate.  I admire each and every one of them for they job they do. I send thanks to all who was a part of Williams NICU stay. Special thanks to my primaries Jaime Belisle, Ian Penne (who both were only able to primary for us while at McDowell NICU) and Ashley Felipe and Randa Hunt. I call them all our Amazing NICU family. 

We were discharged from the NICU on Christmas eve when William was about 4 1/2 pounds. He had a surgery to fix an inguinal hernia before we discharged. He recovered well from the surgery and we took our little fighter home! He was the best Christmas gift ever.

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.