Catching Up

I am way behind on blogging these days. I often have things that I want to write about but by the end of the day (when I actually get time to sit in front of the computer) I am way too tired to blog. Life is great here in the Kang house. We are enjoying summer and all that it entails...walks, playing outside, swimming, bbq's, picnics, the farmers market, and spending time with neighbors and friends! We are definitely busy but I wouldn't have it any other way. We have added water therapy to Madi's list of appointments and she absolutely loves it. She is definitely our little fish!

I am now a full time stay at home mom. After Madi was born I went back to work (pharmaceutical sales) part-time. It was a good balance for me and I didn't mind working 2.5 days per week. Ever since Madi's heart surgery she has struggled with separation anxiety. She is so social as long as mom or dad are in sight. So I knew it was good for Madi to get used to being away from mom a little bit. We have an awesome nanny that came to our house on the days that I went to work and Madi LOVES her...it only took a month or so of crying to get there! In the beginning on June, the pharmaceutical company I was working for had their first lay-off (something that is super common in the industry). They laid off over 30% of the company and I was one of those to go. They actually laid off 70% of my district here in Seattle...it was crazy. As weird as this may sound...I wasn't too bummed to be let go. It was perfect timing for me as we are getting ready to add another little one to our family next month. So, I am home and loving all the extra time I get to spend with Madi before her sister arrives. It is also allowing me to add more therapy and playgroups into our already busy schedule.

We spent the last week of June on a cruise to Alaska. We went with my parents, brother and his family, my uncle and aunt, and some close family friends. We had a great time together and the cruise was absolutely beautiful. We went to Glacier Bay, Sitka, Juneau, Ketchikan and Victoria B.C. Madi did really well on the ship. She is a very busy girl so it was a little tough as there wasn't a lot of space for her to freely crawl around. We enjoyed all of the port towns we stopped in and spent most of the time walking around and enjoying the scenery. Glacier Bay was amazing. The water was so clear and the glaciers were enormous. We saw tons of whales, seals, sea otters, bald eagles, and dolphins. It was definitely a relaxing trip...something that was much needed.

Madi and I also made a quick trip down to Sacramento to visit my family. We had a great time as usual and Madi enjoyed spending time with her Nonna and Papa. By the end of the week she was waking up every morning asking for her Papa...my dad loved it!! We also were able to meet up with local DS group of babies and moms (The Sisterhood) that we always see when we are in town. We even got to meet Sofia! For those of you that remember, Sofia was an orphan with Down Syndrome living in Ukraine. She is now home with her awesome family...and she is sweet as can be! I absolutely love getting together with this group of moms and genetically enhanced kids. I know we will stay close with them through the years and watch our kids grow together! I just wish we lived closer to them so we could see them all more than a few times per year.

I am now in my 33rd week of pregnancy and still feeling good. I am definitely tired at the end of the day and the baby seems to enjoy squirming around once Madi is in bed and no longer climbing up my belly. She literally tries to climb my baby bump when I am holding her...she thinks it is the perfect step for her to get a little higher in the air. It is definitely getting a little harder to carry Madi and chase her all over the house. The is keeping me busy!!!

Here are a few photos from our cruise to Alaska

Celebrating my brother's birthday at a bar in Sitka

A shot of one of the glaciers

Relaxing on the deck

Orthotics

Here are Madi's Jump Start orthotics and shoes that her PT recommended she wear while working on standing. I am not the best at using these but we do try to put her in them each day for a bit while she is standing. The shoes are pretty heavy and solid so she has a hard time pulling to stand in these. She does have quite a bit of pronation in her feet when she is standing so the orthotics help to properly stabilize her ankles. When she is barefoot, she is now pulling to stand on EVERYTHING and (dare I say it) starting the beginning stages of cruising while holding on to the furniture. This is a big step for her as until recently, it seemes that Madi thought her feet were cinder blocks that were not to be moved. So, we finally have some progress. I was originally hoping that Madi would be walking when the baby is born (in September) but given how BUSY this girl is that may not be such a good thing! :) It's all on her time and I am totally fine with that! Until then, we will keep working on getting stronger and enjoying every minute of this sweet girl!

Showing me how big she is

Baby Signing Times

Baby Signing Times has a new fan. We are working on teaching her that she doesn't need to sit so close to the TV to learn all of the signs.

No matter how far away she starts out, she always ends up right there...silly Madi! She is not much of a tv watcher in general but she absolutely loves Baby Signing Times. I love watching her sign with the video. She (and I) have actually learned quite a bit from these videos. Madi is now consistently signing at least 25 different signs. Her signing has taken off over the past few months and she seems to be learning a few new signs a week. Signing has definitely been giving her a way to tell me when she wants something and has cut down on the frustration on both our parts. She is using more and more signs without me prompting her. She gets so proud of herself when she randomly signs drink and, voila...mom presents her with a straw cup full of water. Way to go Madi...keep up the good work but try not to strain your neck so much!

Madi's Heart Day

May 21st was Madi's Heart Day...1 whole year post surgery!! The morning was actually a little emoitonal for me as I spent some time reading old blog posts and looking at pictures from our hospital stay. I am still amazed at how incredibly well she has done this past year especially given the complications that arose.

I remember waking Madi up very early that morning for our 5am check in time. We loaded her in the car and she of course was all smiles the whole way there. My stomach was in complete knots but I was trying to stay as calm and relaxed as possible. We waited in pre-op for a while and met a ton of people from the surgical team...anesthesiologists, ICU personnel, the team of surgical nurses, etc. Finally it was time for the dreaded moment. We left the ICU room and headed down the long hallway to the surgical area. We hit the double doors where we had to say our goodbyes. I tried so hard not to cry in hopes that I wouldn't worry my happy girl. We handed her to one of the nurses and watched as they walked back to the OR. They had to turn a corner before they were out of sight...I will never forget what happened next. As they turned the corner, Madi popped her head up over the nurses shoulder for one last glimpse of her teary eyed parents and just like that they were gone. My heart literally fell into my stomach and I lost all composure. We made our way down to the waiting room and there we sat for hours...literally 6 hours! The surgery was supposed to take 2 hours but ended up taking 6. A nurse called my cellphone every hour with an update...all she would say is he is still working and she is doing fine. That was the longest 6 hours of my life! We read magazines, played cards and games, told stories, looked outside...anything to keep our mind off of what was going on. Finally it was over and we met with the surgeon to explain how everything went. He said that it took a lot longer because of some unknown complications. It was the most difficult AV Canal he had ever seen. She was doing well and it appeared that the surgery was a success. He said there was a chance that she may need another surgery in the next few days...only time would tell and the first 48 hours were the most critical. We had to wait for a bit while they got her situated and stable in the ICU before we could see her. I remember walking into her ICU room...it was so overwhelming. It was like something out of a movie. There were at least 10 people in there, machines everywhere, alarms sounding, orders being called out, IV's being hooked and un-hooked, and a sweet little girl laying peacefully in the middle of so much comotion. It was very hard to see her intubated and totally sedated. The days that followed absolutely blew my mind. Each day tubes and wires were being removed and she became more and more alert. She showed us what an amazing fighter she is.

We spent a total of 10 days in the hospital. Her lungs had a hard time coming around and her valves were still leaking a bit. After being home for 4 days were back in the hospital with a staph infection in the incision site. The surgeon had to reopen the top of her scar (all the way down to her sternum) and let it heal from the inside out. She was placed on IV antibiotics for a few days and once her white bllod count returned to normal we were released to go home. Dave and I had to pack the wound with gauze and change it twice a day until it healed ( a few weeks). It was awful! I literally didn't lok at it for a week until I finally got the courage. The truth is, Dave wasn't home one night and the dressing needed to be changed so mom had to toughen up.

It was quite the journey for us and we are so grateful for such an amazing outcome. We had a few setbacks along the way but 1 year later our girl is THRIVING!! Prayers were answered and a family grew stronger! We don't know what the future holds for Madi in terms of more surgeries. There is still is a chance that she will need another repair down the road but for now, everything looks great. We are holding on to that and just enjoying every day with our Miracle Madi!

Happy Heart Day Madi! Of course we had to celebrate with a Heart Party this year. It looked like Cupid made an appearance at our house. I didn't get many pictures of the evening but we had heart decorations, a heart cake, and some close friends to help us celebrate Madi's big day. Here are a few pics from last year and this year. WOW...what a difference a year makes!

No words.

There are no words. Not even one...to try and explain how lucky I feel...how blessed Jenn and I are. Madi muscled her way through a tremendously difficult day a full year ago. I am still frightened out of my mind when I recall what that experience was like...the event was clearly necessary, but scary nonetheless. Now, I think back to the tears, the blank stares, the dreadful passing of time; I recall holding my tiny daughter's even tinier hand while she was in the PICU with chest tubes, IVs, and a large assortment of monitoring equipment that I am still unfamiliar with (and, I wouldn't mind never being acquainted with that environment again)...the memories still bring back tears - tears of fear AND tears of joy. Yes, I am babbling. Partly recalling memories that I have subconsciously repressed and also finding joy that I AM remembering a day that brought a new and profound sense of appreciation for life...not just "life" in general, but the most important kind...my daughter's life. For those families that have yet to put this type of day in their "rear view mirror," there is no way to sugar coat this experience...I will be the first to tell you that this is the most difficult thing that you will experience. However, take solace in the fact that we were also a family on pins and needles-a regular family just like yours. Worried. Emotional. Had nothing to hold onto but each other and a fistful of prayers. We got through the day. The first year. And, our beautiful Madi is thriving. Our prayers are with you as well...wherever you are and whoever you are.

Sweet Little Madi,

I love you. I love you, I love you, I love you. How infinitely wonderful that I get to raise you and spend time with you. Watch you learn, grow, throw fits, laugh, smile, wave, hug me, kiss me, pat my back when I hold you and pat your back, make faces at me, light up when you see your beautiful mommy. Daddy is the luckiest daddy in the world...really. I am looking forward to all the years I get to spend with you and watch you grow, laugh, and live. Give thanks everyday because I always give thanks for you.

Love,
Daddy

A Year Ago...

A year ago today marked the beginning to the most difficult day of our lives. I remember the day so clearly...we were preparing for our daughter's open heart surgery that would be taking place the next morning. How does a parent prepare for that? I remember trying to only think positively but of course the "what ifs" managed to sneak their way into my thoughts. I kept reading and re-reading the packets of information the surgeon gave us. We tried our hardest to act like this was an ordinary day as we packed our hospital bags and tried to think of the most comforting toys to bring for our sweet 6 month old. I was dreading the moment we would have to let go of her and hand her over to the medical team that was going to give her a second chance at life. I remember staring at her chest after her bath that night, knowing that it would never look the same. I soaked up every inch of her beautiful, perfect and pure skin. I of course took a million pictures of her bare chest wanting to record exactly how it looked. I knew that this surgery was necessary. Without it, her life expectancy would only be into her teenage years if that. Still, knowing that didn't seem to be making this night any easier. We had been waiting so long for the day to come. We had known about her heart defect since she was 2 days old and was told that surgery was necessary. There was some relief in knowing that finally we could put this dreaded day behind us and move on. I couldn't wait for the time when we didn't have to worry about blue lips, oxygen sats, weight gain or heart failure.

I knew we had so much support behind us and that meant the world to me. My parents were in town, we had visitors bringing over blankets, meals, hospital survival kits, toys for Madison, magazines, games...anything and everything to help us get through the next few weeks. It was so amazing to feel the love and generosity that was pouring all over our family. Dave and I quietly escaped for a little bit and just sat on our bed and cried...and I mean cried. We talked about our fears, how helpless we felt and how we wished we could switch places with our sweet girl. It was such an amazing moment filled with so much love and honesty. I remember thinking that our little girl was peacefuly asleep for the night and had absolutely no idea what was about to happen to her. I knew our girl was a fighter and that her strength and resilience would get her mama through. I had no idea how profound the impact would be on us. Watching her fight was amazing and I fell deeper in love with my sweet girl...something I didn't know was possible!

20100423-_KSB5385.jpg

Click here to view these pictures larger