Update on Miss Mya

Today has been a pretty tough day. Mya couldn't eat all morning, and the surgery timeline was essentially 3 hours later than expected. We got to the hospital at 11:00am and were shown to a prep area about 11:45. There she got her arm bands and we wiped her down to make sure her skin was clean and put her into her sweet little robe and socks. Due to the previous surgery being longer than anticipated, we ended up sitting in that room until 1:45. Our little champ was very good, pending the circumstances, but it certainly was a difficult waiting period. Mya was given a some medicine to keep her from getting worried about leaving us, and then they took her to be prepared for surgery.

She was given an IV and the breathing tube. They began the usual anesthesia, but for some unknown reason she reacted to something within the mix and went into cardiac arrest. They resuscitated her and put her on the "ECMO" machine, which is taking the stress off her heart, by oxygenating her blood for her. We were alerted about 1.5 hours later... some tough news to take. We were able to see her fairly soon after. The lead anesthesiologist has never seen this situation in such a "common" procedure (in the thousands of cases he's performed). Mya is currently in the ICU with the best people helping her. One of the nurses commented saying that we are lucky to be here in Seattle with the best people, otherwise she may have not made it; due to the severity of the situation. They have decided not to progress with surgery at this time, until they can analyze the situation further. We are in the ICU for a minimum of 2 days where they'll be testing for any possible reasons for the reaction; as many different surgeons and doctors are thinking thru her situation to find a cause. We would truly appreciate any and all prayer for our situation. She looks pretty rough, but she did open her eyes and we get to be by her at all times.

Surgery Is Fast Approaching

Tomorrow is the big day, assuming Mya is healthy enough. We will try to keep everyone updated with our blog, as it'll be hard to communicate to everyone individually. We had a big pre surgery consultation with Mya's surgeon on Friday, which was great to learn about the entire procedure. I had a page and a half typed up of questions to ask... and they answered them all. We have the best of the best working out our little girl, we just have to pray for everything to go smoothly. If you are a detail kind of person, I'll include as much as I have time for on our blog postings (also to keep this blog as a journal of the events). If you get overwhelmed/bored by medical terms/stuff (like I often do), I'll try to bold the most important stuff to give you the abridged version.

Here's the scoop... from how I understand it's going to happen.

Mya has a heart murmur. This means that there is a hole in her heart (from the diagram below) that is in the wall between the right and left ventricle. Normally blood moves from your right atrium to the right ventricle to the lungs where oxygen is added back to your blood stream. From there, the blood transfers back to the heart- into the left atrium to the left ventricle to feed your body oxygen. Mya's heart is working 2x as hard as a normal heart because the hole is forcing blood to re-circulate from her heart back thru the lungs where oxygen is placed into the bloodstream to be sent back to the heart to go to the balance of the body. The blood flow is negatively affecting both the pulmonary & aortic valves, so it needs to be corrected. Often kids have this situation that it's only a problem to one valve, and they can often "grow out of it," unfortunately that's not the case with our sweet little one. This isn't an emergency situation for Mya, but if left unfixed (and the only fix is surgery), it could cause some long term damage to small blood vessels which would cause damage to the lungs and could create irregular heart beats.

Beginning two days ago, we've had to bathe Mya with a special antibacterial soap and put some anti bacterial stuff in her nose for the incision and for her breathing tube. We have to do this thru tomorrow morning. Already, not fun. She gets pretty mad with both! She can't have any kind of food or milk after 4:00am tomorrow morning and can't have water/clear liquids after 6:00am. Major bummer for our little one who will be super hungry!!! We are to check into the hospital tomorrow at 11:00am, they'll take her at that time and we won't see her for the next four hours...the longest four hours of our lives!

From 11:00-12:00pm she'll be put to sleep, given a couple of IV's, breathing tube, and all of the anesthesia. They will then do an esophageal echo cardiogram where they look at her heart by putting a scope down her throat to get a better picture and to quadruple check visually to see if anything looks different before they open it up. At that point, she'll be taken into surgery, which should last about 45 minutes. They will open her chest thru a vertical incision (probably 3-4" long), and stop her heart by tying off the valves to her heart but forcing her blood thru a pump that will add oxygen to her blood and act as her heart temporarily. Once they stop her heart from beating and drain the blood, they'll make an incision thru her right atrium. They will go thru that section to get to the hole, and will either give her some stitches to close it or they will patch the hole. Once they get everything to the desired level, they'll slowly re-introduce her blood back into her heart, and within 1-2 minutes the machine will no longer be necessary. Apparently your heart is a very strong muscle and really doesn't have a problem stopping temporarily. They'll add a drainage tube to the bottom of her incision, and will add two wires (standard procedure) for a pacemaker if necessary... but precautionary only. They then wire her breastbone back together and close her chest with stitches from the inside and a "glue" to the outside. She'll be taken to ICU from that point and will stay there with her own doctoral care for probably the next 24hrs. These doctors will decide how stable she is and will make the choice to remove the breathing/drainage tubes from her and to advise when to let her wake up. Hopefully no more than a day in this spot! After that, she'll be released to the "main floor" where we as parents will be more important to help care for her. The main goal at this point is to get her home... they don't want to keep her. She'll have to be eating well, at a comfortable level with pain, her oxygen level has to be to 100%. At this point, they're telling us to expect 3-4 days in the hospital- a much better report than our previous 7-10 day expectation. She should come home with Tylenol and a pain killer for the next 5ish days.

So that's the tale as I know it and I'll be sure to keep up when/while I'm able.

We thank you for styaing updated and for all your prayers during this difficult time!

Happy Birthday Mya!

Today is Mya's first birthday, and what a wonderful one it's been! We celebrated with a big party yesterday, thank you to the many friends and family who made the day very special for us. Our sweet little girl is growing so fast! Mya liked her cake, although she didn't really dive in, she certainly enjoyed it! Most of Mya's family was able to be here (minus 3)... she sure loves her cousins! Between lots of kids running around and beautiful weather, we couldn't have had a better day. The excitement of opening gifts...I think all the other kids had more fun than Mya did! A surprise visit from the Hicks family! So good to see you!!!

Mya enjoying a new gift- thanks Josh & Anna!

Mya spent this week (at our "germ free" home instead of daycare) with Grandma Sawyer. Huge thanks to Mom for saving me, not only saved us in daycare bills for the week, she left us a clean house & laundry and helped with the set up & clean up for the party. Mya had a good time beating the heat with Grandma, even though it was tough for a few of the really hot days. I think they both enjoyed their time together! We decided to buy an air conditioner this week... I think it was the last one in the city of Lynnwood! Mya was really struggling with the heat, and we decided her little heart didn't need the additional stress. Not to mention, we're going to be spending a lot of time at home in August for her recovery, so the purchase was validated. You would think that this would have been a quick purchase, put it in the window turn it on and viola, a cooler room. Not for us. Rob spent 3 days on the project. It started with just finding the air conditioner (which he went to 3+ stores to get). He quickly realized that for the one he did get, we didn't have the correct outlet for it. After trying to come up with all the options, it was clear that he needed to install an outlet for it to work correctly. With the help of Gene Ross (what a sweet man!) and my brother, Mark, on 2:00am Wednesday morning we had cool air for our little one! They installed a 220 volt outlet in the fuse box and wired it into our loft. I love my diligent husband! Family Time... We got to spend time with my family this week, and we have a darling little nephew! He's four months old and cooing like a champ. Brittany helped with some party treats & the cousins loved playing with little Mya. Uncle Mark made Mya a toy box- it's awesome!!! It's always so much fun for us to get together!

Mya's Firsts...

About a month ago Mya said her first word, "Hi!" Now she's the official greeter at daycare. She's a pro at waving and saying Hi, however it's only on her terms! She's cutting her first molars, not a lot of fun from our side, but she's got a mouth full of teeth. She stood by herself for the first time on Saturday, but the biggest first happened yesterday, she took her first 5 steps! Rob and I tried to get her to do it over and over after it happened... just like our little doll! We're still working on it, she needs a few more days of practice before she feels comfortable being on camera with her new trick. She is so sweet these days, just see for yourself!

What a Week!

We've had an action-packed week. At work we had an employee picnic on Thursday, that wasn't just any employee picnic/kickball game. When you work for REI, there are a few competitive folks around, this "friendly" kickball competition is nothing short of a full fledged event. This included plenty of pre game trash talking, a grounds crew "dance," team uniforms, four games of kickball and of course I got to dust off my trusty pompons and lead the "Buzz Kill" team's chants. I'm fairly certain that I may regret some of my cheerleading behavior... the photos have yet to surface! We had a great time, who gets to enjoy work like that???

This morning we hosted a baby shower for our friends Jackie & Dane. It was a great time, especially with the beautiful weather! All the dads and kids went to the park, and enjoyed daddy time during the shower. After naps, we then went to Theo's 2nd Brithday party. We just met Theo today, thanks to facebook- but Rob & I grew up with his Mom & Uncles. It was so fun to catch up! The whole Tharp family was at the BBQ, below is a photo of Carissa, Justin, Trevor and Sue. Dave was there too! They are all doing great, it was so nice to catch up!

Happy Birthday Theo!!! http://nycpersons.blogspot.com/ Mya has one more week in daycare. After that Grandma Sawyer is coming to watch her for a week prior to her surgery hopefully keeping her from any unnecessary germs. If she is sick, they'll have to postpone the surgery date. Mya really likes a couple of the people at her daycare, she's going to miss them! We've also learned that we won't be able to have visitors after surgery (for possibley 3 weeks), but we truly appreciate all of the thoughts and prayers we've already been given and would appreciate continued prayer for her recovery. I'll be sure to do updates when time allows via our blog. We appreciate you keeping up with us!

Sucking on strawberries in the summertime...is anything much better in life?

A Day at the Park

Happy 4th of July!

Mya enjoyed swimming outside today, it was in the mid 80's today- a perfect day for playing with family outside!

Good morning crazy hair!

So we walked into Target, shopping for some birthday gifts and what did we see? The patio set we've been dreaming of for the past few months had been marked down to a clearance price, and it was going fast. Big bummer. This was a definate splurge on our behalf, but we are so happy with our new outdoor living space, it's finally useable for just hanging out on a regular basis! The umbrella tops it off (no pun intended...) enabling Mya & I to be out in the heat of the day enjoying the patio!

Like Father... she already likes to watch TV way too much. Usually it's a Mariner game that Rob has on, but they were both inthralled at this show. And look who has control of the remote (and control of what else Rob?) Enjoying our patio time!

What a Week! We've had an extremely full week that has included the 2nd ear infection for Mya within 2.5 weeks, an allergic reaction to amoxicillin, two trips to the doctor and a day at home for recovery... we're all exhausted. Poor thing has been a trooper thru it all, but it's been a rough go with lots of sleepless nights! Needless to say our little one continues to steal our hearts with her daily antics. She's all over the house now; walking along anything she can pull herself up to. She's not figured out the stairs yet; but I'm sure it won't be long! We're reveling in the last few weeks of her "health" as we know it. We had a nice Father's Day at home together, Daddy's real celebration is this weekend on the Jackson Golf Course!

Happy Father's Day, Daddy!

She's EVERYWHERE now! Including under the table... We decided to get her an early Birthday toy since she'll be out of commission the day after her big #1 Birthday. She's enjoyed her new toy- thanks for the recommendation Elliott!

One spot I don't have to child proof... yet. Thank God for little arms.

Her current status on attempting to walk... it's going way too fast! Notice she stops to watch the Mariner game... she claps with the crowd too (we didn't catch that on video though). I guess we can say she's been well trained (or is it propaganda)???

Surgery Update:

So we have scheduled open heart surgery, August 3rd. Only six weeks away, it finally hit me yesterday after taking the phone call from the scheduler at the hospital. I don't know what will be harder going forward as a parent after seeing your child in a hospital bed all hooked up. I'm not a pro, but I'm guessing this probably tops the list of the one of the least fun things to do as a parent. Amazing how this little girl that we've known less than a year has stolen our hearts and is breaking them at the thought of causing her physical pain. However,we are confident in the doctors and surgeons to make good choices and to perform a somewhat routine procedure on our special little girl. We appreciate all of your thoughts and prayers!

Just being Mya...

Our Little Mya We found out yesterday that Mya needs to have open heart surgery. We're waiting on a surgeon's conference on Monday to find out the timing of when they think it should be done. At this point we're hoping for sooner than later... and are assuming it will happen within the next 3 months. We would really appreciate your continued prayer for her little body, for healing and for the doctors involved in helping her! We're so thankful to be living so close to Children's Hospital where she will receive the best care in the industry. She will be in the hospital 7-10 days and will need 6 weeks of recovery prior to returning to "normal" life (ie daycare) post surgery. I'm very blessed with a great employer where I can take most of that time off- but we'll also have 4 family members who are all teachers and on summer vacation who have offered to help us as well. We really have been blessed by many wonderful & encouraging messages and comments, we are so appreciative of all of the thoughts and prayers that have been sent our way. Thank you for your friendship and continued support for our family!

FAMILY

We have been so blessed to have such a wonderful family! We had the pleasure of hosting our families last weekend for Mya's Dedication at church and for Mark & Brittany's return from Saipan. We had an action packed weekend- Church, BBQ at our place, swimming at the hotel pool and the Mariner's game. We really appreciate all the support our family gives us, we love you!

Mya turned 10 months old this week. She's crying in this picture because I took the dirty door stop away from her. For some reason she loves to suck on it! I'm always amazed at how she can find the grossest stuff on our floors- of course it always has to go in her mouth. It's so disgusting! We've caught her several times with a big hair ball in her mouth, nasty. She's just started to eat "normal" food - we're loving that. She had shredded chicken, peas (her favorite :), carrots, cherries, pineapple, cheese and noodles for dinner... a lot of it! Luckily she's not showing signs (at this point) of her father's picky eating habits, anything we give her is shoved into her mouth and enjoyed! She's all over the place now, playing with toys and stuff that Mommy & Daddy will learn to put at a better height with a little one around. Soon we'll be investing in baby gates, we're reveling in the time we have left, as she hasn't figured out how to climb stairs yet. But there's always tomorrow...