What Frank has been up to

Frank has been working so hard, I'm so proud of him. Mazda has noticed his hard work and skill too. They have decided to send him to all the trainings required to make him Senior Mazda Certified. So he's been gone quite a bit and will be gone quite a bit more over the next few months. About twice a month they send him out for about 4 days to whatever state the training is in at that time. He's traveling to California, New Jersey, Detroit, Kansas City and I think Virginia. I'm not sure if that's all accurate. He's going so many places it's hard for me to keep track of when and where. Even though we are so proud of him and what he's doing, Mya and I really miss him while he's gone. But we're always so happy to see him return safely to us. Mya especially misses him. Sometimes when he's gone, she'll crawl into our bedroom looking for him and when she can't find him she starts to cry. Surprisingly, a phone call to Frank fixes it (at least for a while). Mya hears her daddy's voice and immediately lights up! Frank also joins us every night via phone when I put Mya to bed and he says our bedtime prayer with us. I think his training will be over by the end of November, at least I hope it is. We'll try to keep everyone updated.

What Mya's been up to

Mya is doing so many new things I just can't believe it! She's more than mastered crawling. I mean man she is speedy! We've had to install all the fun safety stuff like cabinet and drawer locks, outlet covers, and pads for the hard sharp corners. We've also had to put up a gate at the bottom of the stairs. One of her favorite things to do is climb stairs and she is pretty good at it too. If you look away for 5 seconds she's already halfway up the stairs. She's still trying to figure out how to go back down the stairs. Her perferred method seems to be head first but we're working on that.

Mya is also standing up on her own for long periods of time. She has attempted a few times to take a step but thus far has fallen every time. But she's practicing and I'm sure walking isn't too far in the future for her.

As far as talking goes, no words yet. Just a lot of babbling and yelling. Her genetics doctor, Dr. Rope, told us that babies with DiGeorge syndrome don't tend to talk for a long time. He wouldn't be surprised if she didn't really start talking until about the age of 4. Researchers really aren't sure why this is. They understand just fine but verbal skills tend to develop later. Dr. Rope did say that sign language is a wonderful alternative for her until she starts talking. They seem to have little trouble picking up sign language, so we are currently working on signing with Mya.

Because Mya gets diaper rashes and yeast infections so often, we decided to bring out the potty a couple of months ago so she's familiar with it when she's ready to be potty trained. I have been putting her on the potty every morning when she wakes up, after every nap, right before she goes to bed, and any time she gives me her potty cues. We have about a 50% success rate right now which really isn't that bad. When she goes to the bathroom in her potty, we cheer her on. But when she doesn't, no big deal, no pressure. And her diaper rashes are getting less and less severe and the yeast infections are few now. She hasn't had one for over a month!

Sorry it's taken so long to update. Hope you enjoy the pictures!

What I've been up to

Latley I've been really busy but when I look back over the last month, I can't for the life of me figure out why. It seems I'm always going, going, going, but I can't remember where or what I was doing. How strange!
I have been trying to tap into my more creative side in the kitchen and look what I came up with! It was my first time doing anything like this and I have to say I am quite impressed with myself. I made these strawberries for a wedding. I also made about 280 other strawberries in red and purple but with no designs that were place at the reception tables. The fancy ones in the pictures were made for the head table. This may not seem like a big deal but for those of you that know me, you know I have no creative bone in my body so I am very proud of myself!
My next big project is Mya's first birthday party. We're having a luau and I'm going to attempt to decorate her cake. I'm also attempting to create some cute cupcakes and other fun treats for the guests but so far my practice attempts haven't turned out too pretty. I still have time though and practice makes perfect! And if I just don't have it in me, there's always the grocery store just down the street with an awesome bakery so I'm trying not to stress too much about it.

Frank is back!

Frank went away to Kansas City for some training with Mazda from Monday the 8th to Fri the 12th. Mya and I really missed him and are so grateful that he returned safely to us. Having him away for an extended period of time makes me realize just how much he really helps out when he's here. I have a new appreciation for everything he does. When he was gone, the break that I got when he got home from work was not available. By the time he got home, I was exhausted. But aside from what he does around the house and the help with Mya, I just plain missed his company. I'm ashamed to admit that I felt so lonely sleeping by myself that I took Mya out of her crib to sleep with me. That probably wasn't good for her sleeping habits being that we're trying to get her to sleep in her own crib. Fortunately it didn't seem to really affect her negatively. She took right back to sleeping in her own crib again. In fact, I dare say she prefers it. Thank goodness for that!

Look what Mya is doing now!

I can't believe our little baby is growing so fast! She'll be 9 mo on Jun 17. In the past month she started crawling and man is she quick! We really have to keep an eye on her now, she's all over the place! She also started drinking from her sippy cup a few weeks ago. She can't quite sit up but she's really working hard at it. About half way up she needs a little nudge to make it the rest of the way. Mya is also making movements that look almost like clapping, it's a work in progress. She really is just the happiest and most easy going baby I've ever seen. However, she is starting to throw little tantrums and fake cries when we leave the room. She's getting smart about how to work mom and dad over. I'm convinced she's been doing this for a while but Frank and I are just now catching on. That sly little cutie.

Reflecting on the past 8 months

Our little Leilani is 8 mo old now! I can't believe it! It's been a crazy ride so far. From delivery til now we've had our hands full. As I remember it, labor was pretty crappy. 4 days of induced labor with and epidural that didn't really work, only to have a c-section on the 4th day. And as luck would have it my c-section incision split open a few days after being home from the hospital. The weeks following that were not fun to say the least. Frank had to flush and pack the wound twice a day. With nothing to numb the area, there was quite a bit of cursing and crying each time. It felt like someone was taking a knife and stabbing me over and over again in the wound. In between dressing changes I would get random sharp pains shooting through my abdomen. I have to give kudos to Frank for stepping up to the plate like that and doing the dressing changes. If he didn't, i would have had to go back to the hospital. To be honest he did a better job than the doctors did. Even though it hurt like crazy when he did it, it hurt even more when the doctors did it. I think it's cuz he did it for love and they did it cuz it's their job.

The couple of months that followed Mya's homecoming were odd. Most new mom's will tell you that they were elated, on cloud nine, experiencing almost a high from the joy their new baby was bringing them. But if I were to be completely honest, I can't say that. I felt joy that she was with us, yes. But I also felt like I really wasn't her mom, more like her babysitter. I kept waiting to feel that enormous amount of joy, that high that just wouldn't come. Don't get me wrong, I was happy, but not like I expected. I cried a lot, mostly because in my mind I didn't feel like a mom yet, so in turn i felt like a failure. I don't know if it was the hormones, or the fact that she had to stay in the NICU away from us, or the newness of it all that it just hadn't had time to sink in fully yet. Maybe it was a combo of it all, but I was truly upset at the way I felt. But it's so different now. I do get that enormous amount of joy in my heart when I see her and hold her. My heart leaps miles high when she smiles at me. This level of love cannot be known until you have a child of your own. Now I understand what my mom was saying all those years. Now I understand her love more clearly than I ever have before.

A few days after we took her home from the hospital we got a call from the neonatologist. "Your daughter tested positive for DiGeorge syndrome" I don't remember much else from that conversation. I just remember watching my daughter sleep while I cried and Frank held me close and rocked me. I remember saying over and over again "my baby, my little baby". All I could think of was of the many trials she was going to face. We didn't know anything about the syndrome other than it was probably what caused the heart defect and it severely weakens her immune system.

After taking some time to let it sink in, it was time to buckle down and step up to the plate. We needed to be able to give Mya the best chances in life possible and in order to do that we had to arm ourselves with information. We went to her first appointment with the geneticist with a list of questions. We did research non stop on the web. One of my friends always tries to give us credit for being brave and strong, but that's not how I see it. We're her parents, and that's just what parents do. You just do without a second thought. You not only survive hardships but you attack them head on if it means giving your kids the best life possible for them. I see moms so differently now. We are truly fierce warriors so don't mess with our family!

6 months later, March 5 to be exact, it was time for Mya to have her heart surgery. That morning we woke up with heaviness in our hearts. Mya was the same as always. She was tired because we had to wake her up two hours earlier than normal but she was still smiling. It pierced my heart. When we handed her to the doctor to take her to the OR, I didn't know if I would see her alive again. I think that what made it really hard was the fact that she was just like any other baby showing no signs of being sick. It felt like we were giving a perfectly healthy baby over to the doctor for heart surgery not knowing if she would survive or not. Why would you do something like that unless your baby was severely ill and needed it as a lifesaving measure? Although we couldn't see it on the outside, she truly was sick and going into heart failure. Frank and I held each other and cried. We felt so empty and yet so heavy. 5 1/2 nail biting hours went by with periodic updates. "She's under anesthesia now." "We just made the first incision." "We've successfully stopped her heart. She's on the bypass machine now." " The doctor is closing her up now." Friends and family were in the waiting room with us. We tried to keep it light and optimistic but I don't really remember much of it. Finally the surgeon came out. The surgery was a success and we could see her in the PICU after they were done getting her set up in there.

She was puffy with her eyes shut. She was hooked to the ventilator with numerous IV's and chest tubes. It was hard to see. But at the same time I was so glad to see her again. My emotions were so confusing. I can imagine that it was similar for my husband but I don't know for sure. The days that followed long. There were times when I lived minute to minute. But each day she showed improvement. The hardest thing was to know that she didn't know what happened to her or why she was in pain with all these things hooked up to her. My heart felt like it was physically broken for her. In my mind, I felt that she looked to me as her protector, someone she trusted and I broke that trust. She would look at me with eyes as if to say, "Why don't you fix this? Make this stop" But I couldn't so I lost her trust

While I was in the hospital I noticed the other parents. We all had a battle we were fighting and we wore the wear and tear on our faces. It seemed we were all walking around like zombies, some more than others. Frank and I didn't really talk to the other parents there but it felt like we had an understood bond because nobody can begin to comprehend your pain unless they've gone through something similar. Being in the PICU helped me realize how truly blessed we were. Some parents didn't know if their baby was going to make it. The baby across from Mya had to be re-intubated three times while we were there. The baby next to Mya had been in the PICU 5 out of the 8 months of her life. Her mother is one of the strongest people I've ever met. With Mya, we knew she was going to make it. The journey that she had to go through was hard for us but at least we knew she would pull through. Not everyone in that PICU got that luxury.

A week later we were home. She wouldn't let me put her down for the first couple of days but slowly that went away and as she healed and the pain decreased, her personality slowly came back. It took a little over a month to see the old Mya again but she came back. Her recovery has been amazing. She can now sit on her own and is looking like she might start crawling in a little bit, that is if she doesn't walk first and skip crawling all together. She's such a happy and easy going baby. She has slept with Frank and I in our bed up until about a month ago. We thought because she was so used to sleeping with us, it would be hard to get her to sleep in her crib but she did it with no complaints. The first night in her bed she slept 9 hours straight and woke up in a good mood. She's had a few nights that were kind of rough but I can probably count those on one hand. And she doesn't always wake up in a good mood. But overall we've been lucky. She's a very pleasant and happy little girl. She loves to play and cuddle with you but has no problem being alone and entertaining herself.

I truly feel so blessed in my life. My husband loves and respects me and loves and adores our baby. He's right there in the trenches with me changing diapers and all! Our parents have been there for us from the beginning, going out of their way to make sure we are ok. We couldn't ask for better friends. They've stood by our side and cried with us, prayed with us, and laughed with us. So ya, we've had a bumpy road, but the blessing that came out of it are totally worth it! I feel that our relationships with those that have gone on this journey with us have grown closer and stronger with each challenge. Thanks for reading!

forgotten family members

With Mya being the star of the show, some of our family members have not had their deserved feature on the family blog. It's about time we show them too. Annabelle is our three legged dog we adopted in December of 2005. Kitty is the cat that we rescued in May 2008. She came scampering into the Goodyear shop that frank was working at in Phoenix. Their manager called the Humane Society. They said that the kitten would probably be euthanized because she was just too small for them to take in. Frank just couldn't let that happen so he ended up taking her home with the intent of finding a new home for her. We were going to give her to a friend once she moved out of her apt and into her home. But the process took months and by the time she was ready to take the kitty in, Kitty had already stolen our hearts and we just couldn't let her go.

Should we call this Mya's blog instead?

Seems like she's the star of this here operation. Here's more random pics of our little Mya Leilani. The purple knit outfit in some of these pics was made by a lady that goes to the same dance class/club that my parents go to. Wish I were that talented!

Mother's Day

We had so much fun on mother's day. Our family along with my parents went to church early in the morning. Afterward, Frank and my dad cooked breakfast for my mom and I while we just sat back and relaxed. They cleaned up and did the dishes too! I could get used to that! After breakfast we headed down to Sandy to visit the Living Planet Aquarium. We saw all kinds of different aquatic life; everything from sharks and jellyfish to an anaconda and piranhas. Mya loved watching the different fish as they swam by the glass. After the aquarium, we stopped by the Southtown mall. Dinner was next where we enjoyed the ambiance of the Mayan. For those of you that don't know, the Mayan is like a restaurant straight from Disney Land. It's a theme restaurant that surrounds you with sounds and sites of the mayan jungle complete with a waterfall and cliff divers in loin cloths. Ton's of fun!!!

one of The Mayan cliff divers

Fun at the mall

The aquarium was tons of fun. But no flashes allowed so pictures were pretty hard to get

The family at the park

View from the park across the street from the house

Annabelle soaking in the last of the days sunrays

Mya and daddy "hangin out"

hey there! Long time no blog!

It's been a while since I blogged and not too much is new. Frank is still at Freeway Mazda doing his mechanic thing and I've recently gone back to doing on-call night and weekend hospice nurse. Mya Leilani is doing wonderful! She's started eating solid foods, sort of. There are times when about half of the food ends up on her face and bib. She rolls over from her stomach to her back and then back to her tummy agian. She's sitting up for about 10-15 seconds at a time before she topples over. She's is still the love of our lives and the center of our world. I'm still amazed at how much love we have for her and how much joy she brings us. Lately I've really been trying to educate myself on the different symptoms of VCFS (DiGeorge Syndrome) and how to recognize them and what we can do about them. For those of you that are interested in learning a little more about the genetic disorder that Mya has, a good place to go is http://www.friendsofquinn.com/. It's a place where kids with disabilities and their friends and family can go to learn from each other and share experiences. Everyone has heard that knowledge is power and that's what Frank and I are doing! We're getting the ammo to help give Mya all the advantages that we can and help her live life to her fullest potential. As fate would have it, I was walking through Barnes and Noble and happened to see a book on my way out the door titled "A Different Life" a memoir by Quinn Bradlee. Out of curiosity I opened up the cover and read the synopsis. It turns out that it's a book about the life and experiences of a man who has VCFS. This book has helped me see from his prospective what it's like to live with VCFS. It's a brave and honest book that I recommend to anyone. This book is what lead me to the website mentioned earlier.

Mya post op

This is Mya shortly after surgery

And this is Mya 5 days later!

It's time for an update

So I know it's been a while since I've written anything but it has been a little busy. So a lot has happened since Christmas! First of all we moved to Utah and are very happy to be with our family again. And I know that our parents were really excited to have their grandaughter so close now. Frank works at Freeway Cadillac and Mazda and really enjoys it. I found a job as an on-call nurse for a hospice company here and have really enjoyed working with them.

The biggest news however is that on March 5, Mya went to Primary Children's Medical Center to have open heart surgery to repair a heart defect called Tetralogy of Fallot. They started the surgery at 8:30am. The nurse would come out to update us every couple of hours.We were on pins and needles in the waiting room. The first update came at about 9:30 letting us know they made the first cut. About an hour later they let us know that they had successfully stopped her heart and the bypass machine was doing the work for her. At about 12:30 the nurse came out to let us know that Dr. Kaza was done with the repair and her heart was beating again, they were closing her chest up now. At 1:30 Dr. Kaza came out and told us the surgery was a success and we would be able to see her in the PICU in about 30-40 minutes. I can't even begin to describe the feelings and emotions I had that day. The thought of her little heart no longer beating was horrible. And the pain, discomfort, and confusion she would soon be feeling was horrible. As Mya's mother, I feel like my baby looks to me as the one to trust, the one who will take care of her. So knowing that she has no idea what's about to happen to her, anticipating her discomfort, preparing for the tubes, IV's, and ventilator she'll be in the ICU with, and realizing that she will look to me to save her and I won't be able to do anything was breaking my heart! And after she woke up in the ICU and looked at me with those pleading eyes, I just broke down and started crying. In my mind, I thought that she blamed me for letting this all happen to her. She wouldn't smile for days even though she was awake and alert. There were times when she would look at me and then look away as if she were angry. The nurses kept saying it was because she was still sedated but it still broke my heart. Despite all the tubes and wires, she was making a remarkable recovery. The team in the ICU along with her cardiac team decided she was ready to come off the ventilator the next morning. She did have some swelling from being intubated that was making it hard to breathe. There was a possibility of her being re-intubated but in the end she pulled through and they were able to avoid that. On the third night in the ICU her sinus rythm was off and they had to pace her heart for her over night, but the next morning they stopped the pacer and her heart was pacing itself again. By monday morning she was stable enough to move her to the surgical floor. They took out the line in her neck, the arterial line in her ankle and a peripheral IV in her hand leaving only one IV in her other hand. They also took out the wires in her heart that allowed them to pace her heart if necessary, and her chest tube for drainage. By Tuesday they decided she was stable enough to go home! Her recovery has been absolutely amazing. Her cardiologist told us to expect to be there for 7-10 days for a best case scenario and 3-4 weeks worst case scenario. She ended up only staying in the hospital for 6 days! Thanks for all of your prayers. She is now smiling and laughing, kicking and babbling like she was before the surgery. She does have to stay on oxygen continuously for about two months but it that's the worst and I get to have her home, I'll take it! There is a little bit of a difference in her personality. Before the surgery she was very independent. She would wake up from naps and just play with whatever toys were around her. She would go to sleep on her own. The first day back home I could not put her down. The second I did she would start screaming and crying. a look of fear was in her eyes. Today I am able to put her down and she's okay with it as long as she can still see me. I think the experience is still fresh in her mind and there is still some fear and apprehension but it's slowly going away. In the meantime, I'm just glad to have her home.

Mya's baptism

Mya was baptized at Holy Family Catholic Church in South Ogden, UT on Valentines Day. Her Godparents Hedy and Julian Diaz (my aunt and cousin) weren't able to be there so my parents sat in for them. It was kind of hard to get good pictures but we did our best! After the baptism we had a little party back at my parents house complete with good food and good friends.