Monday, December 7, 2009
Teething Monster and Updates
Madi has been a teething monster lately. She has 4 teeth now and is working on numbers 5 and 6. She has had the front 4 (2 on top and 2 on bottom) for a few months now but last week I noticed that she was a little fussy and drooling like a champ. I tilted her back and looked around and noticed that she is getting her 1 year molars...ouch. She is handling it pretty well but you can tell it is not the most comfortable thing. She also had double ear infections (her first ear infection ever) at the same time...poor baby. We had a few rough nights (one with a 103 fever) but she is much better now.
We have had a busy few weeks. We had a great Thanksgiving with some good friends (the Garces family) and then headed up to Whistler, Canada for the weekend. After living in Seattle for 10 years I finally made it up to Whistler (only about a 5 hour drive). Madi and I had a great time shopping and strolling through the village while Dave went skiing. This was Madi's first real time in the snow and she seemd to enjoy every minute of it. We got quite a bit of snow here last winter but she was too little to enjoy it.
We spent the next weekend at the Alderbrook resort on the Hood Canal. The resort is beautiful and the weather was cold but sunny and clear! We relaxed on Friday evening, hiked on Saturday morning and then went to my work Christmas party on Saturday night. Madi had a great time and was an easy traveler as usual! Santa made an appearance and gave the kids presents. Madi stared in awe and waved to Santa but when it came time to sit on his lap she wanted nothing to do with him. We finished up the weekend at the Shilter Farm in Olympia where we cut down our Christmas tree. We had a great time and found the perfect Noble Fir. It was a beautiful, sunny day but it was freezing (literally the high was around 28) so we were all bundled up and Madi was in her full snowsuit! She had a great time even in the cold.
This past week Madi and I spent some time with a few of my friends I played soccer with in college. There are a few of us that try and get together every few months for dinner. This time we got to meet baby Cole (Heather's new little guy). He is such a sweet and easy baby...we had a lot of fun. Of course it was also great to see Nichole, Beth and Kai'o as well. Madi also got her frist Synagis shot on Friday. Synagis is a shot that helps prevent RSV (a horrible respiratory virus). Kids that have heart and/or lung conditions are all at a higher risk of having major complications if they get RSV. So, we will be going to the infusion clinic once a month through probably April to get the shot.
Other than that we are busy preparing for Christmas and are definitely enjoying "the most wonderful time of the year"! :) We will be heading down to Sacramento to spend Cristmas with all of my family. I am so excited!!! I willl post some pictures from the past few weeks tomorrow. It is time for bed. :)
We have had a busy few weeks. We had a great Thanksgiving with some good friends (the Garces family) and then headed up to Whistler, Canada for the weekend. After living in Seattle for 10 years I finally made it up to Whistler (only about a 5 hour drive). Madi and I had a great time shopping and strolling through the village while Dave went skiing. This was Madi's first real time in the snow and she seemd to enjoy every minute of it. We got quite a bit of snow here last winter but she was too little to enjoy it.
We spent the next weekend at the Alderbrook resort on the Hood Canal. The resort is beautiful and the weather was cold but sunny and clear! We relaxed on Friday evening, hiked on Saturday morning and then went to my work Christmas party on Saturday night. Madi had a great time and was an easy traveler as usual! Santa made an appearance and gave the kids presents. Madi stared in awe and waved to Santa but when it came time to sit on his lap she wanted nothing to do with him. We finished up the weekend at the Shilter Farm in Olympia where we cut down our Christmas tree. We had a great time and found the perfect Noble Fir. It was a beautiful, sunny day but it was freezing (literally the high was around 28) so we were all bundled up and Madi was in her full snowsuit! She had a great time even in the cold.
This past week Madi and I spent some time with a few of my friends I played soccer with in college. There are a few of us that try and get together every few months for dinner. This time we got to meet baby Cole (Heather's new little guy). He is such a sweet and easy baby...we had a lot of fun. Of course it was also great to see Nichole, Beth and Kai'o as well. Madi also got her frist Synagis shot on Friday. Synagis is a shot that helps prevent RSV (a horrible respiratory virus). Kids that have heart and/or lung conditions are all at a higher risk of having major complications if they get RSV. So, we will be going to the infusion clinic once a month through probably April to get the shot.
Other than that we are busy preparing for Christmas and are definitely enjoying "the most wonderful time of the year"! :) We will be heading down to Sacramento to spend Cristmas with all of my family. I am so excited!!! I willl post some pictures from the past few weeks tomorrow. It is time for bed. :)
Tuesday, December 1, 2009
Madi in Action
I think it is always so fun to see kids in action. So, here are a few videos from the past few weeks of Madi in action. One is of her playing with her favorite game and the other one is of her showing off some new tricks she has mastered over the past month or so. She has definitely developed her own goofy personality. She is a very social little girl and loves to make people laugh. There are times when we are out in public and I notice that Madi is doing everything in the book to get the attention of a stranger sitting next to us. Most of the time people respond but a few times they simply didn't notice her and she was literally forcing out some loud giggles/coughing noise to get them to notice her. We think she is pretty funny!
Sunday, November 22, 2009
6 Months Ago
6 months ago yesterday Madi underwent open heart surgery. It literally was the worst day of my life. I can still remember the sheer fear, pain, anxiety, sadness and hope I felt as I watched the OR nurse take Madi down the hall to the operating room. I carried Madi all the way until we hit the double doors and that was where we had to say our goodbyes. I remember thinking that she has no idea what is about to hit her...and thank God for that! The wait was the longest 6 hours of my life. Unknown complications arose and all we could do was pray...pray for God to be with her surgeon as he did his work. 6 months ago Madi's heart was repaired and she was given a second chance at life. During that time I felt as though my heart was being stretched and was becoming more full of love for her...more than I thought was possible. Watching her fight for her life absolutely blew me away and gave me the strength and courage that I know I will need to continue to always stand up and fight for her.
We came away from this experience with so much more strength, love, faith, patience and humility. Madi continues to amaze us! 6 months later she is doing awesome. Sure her heart is not perfect but right now the doctors are all very pleased with the outcome. I am so thankful for the care, love and prayers we all received. The world of congenital heart defects is not one that I ever wanted to be a part of. I can only feel blessed for our postivie outcome and all that we gained through this experience.
We came away from this experience with so much more strength, love, faith, patience and humility. Madi continues to amaze us! 6 months later she is doing awesome. Sure her heart is not perfect but right now the doctors are all very pleased with the outcome. I am so thankful for the care, love and prayers we all received. The world of congenital heart defects is not one that I ever wanted to be a part of. I can only feel blessed for our postivie outcome and all that we gained through this experience.
Thursday, November 12, 2009
Our 1 Year Old
So I am finally getting around to posting about Madi's first birthday party. We had a great time and miss social butterfly didn't skip a beat. She enjoyed every minute of her party and loved being the center of attention. I think we have a little princess in the making...yikes! :) Before the party started we did a traditional Korean 1st birthday celebration with family. Madi was dressed in a traditional Korean dress that Dave's dad bought for her in Korea after she was born. We took lots of pictures of her in front of food. I'm not sure of the signifcance of the food but that is the tradition. We then placed 4 objects in front of Madi (string, money, a pencil and paper) and waited to see what object she grabbed first. Each object symbolizes something. Madi first grabbed the string which means she will live a long life...after the year she has had that is awesome! She quickly then grabbed the $20 bill in front of her which means she will be rich. The best part was when she picked up the pencil (which means you will be a scholar), she looked at it and very deliberately threw it on the ground... Madi, I think you made your point!
We want to hank everyone who was there to celebrate her big day with us. I know many of you celebrated with us in spirit and we want to thank you as well. Your love and support for our family and especially Madi is such a blessing and we appreciate each and every one of you.
On her birthday Madi had an appt with the cardiologist to follow up on her leaky valves. We have GREAT news! The leak has gotten much better and the function of her heart looks great! They want to check her out in 3 months again but for now she looks fabulous...yay Madi! Madi also recently had her 1 year check up. She is a healthy, happy little girl that is catching up on the growth chart. She wighed in at 17lbs7oz, and is 28.5 inches long. That is 50th percentile for weight and 95th for height on the down syndrome growth chart. She has mastered eating finger foods, is drinking regular milk without a problem, and loves to drink water from her straw cup. We are so happy that she is a healthy, happy, growing baby...what more can you ask for. Here are some pictures from her party:
We want to hank everyone who was there to celebrate her big day with us. I know many of you celebrated with us in spirit and we want to thank you as well. Your love and support for our family and especially Madi is such a blessing and we appreciate each and every one of you.
On her birthday Madi had an appt with the cardiologist to follow up on her leaky valves. We have GREAT news! The leak has gotten much better and the function of her heart looks great! They want to check her out in 3 months again but for now she looks fabulous...yay Madi! Madi also recently had her 1 year check up. She is a healthy, happy little girl that is catching up on the growth chart. She wighed in at 17lbs7oz, and is 28.5 inches long. That is 50th percentile for weight and 95th for height on the down syndrome growth chart. She has mastered eating finger foods, is drinking regular milk without a problem, and loves to drink water from her straw cup. We are so happy that she is a healthy, happy, growing baby...what more can you ask for. Here are some pictures from her party:
Sunday, November 1, 2009
Happy Halloween
Madi had a blast on her first official Halloween. Last year she was 2 days old and spent her Halloween relaxing under the warmer in the NICU at St Joe's Hospital. This year Madi went to Athan's 2nd birthday costume party and then went "trick-or-treating" at Proctor Treats. All of the little shops in Proctor open for trick-or-treating, so we took Madi out and strolled around looking at all of the costumes. I was shocked to see how many people there were trick-or-treating in our little neighborhood...literally there were thousands. It was a lot of fun and our little ladybug was pretty cute I must say. Here are some pictures from the day:
Thursday, October 29, 2009
Happy 1st Birthday!
Happy Birthday my sweet Madi. A year ago you made a dramatic entrance into our lives and you have blessed us more than we could have imagined. You were full of surprises and we were very unsure of what the future held for us. Although we were scared at first, you have shown us that everything is just fine. You bring peace to our sometimes crazy world and comfort to our hearts. You are such a joy and you have impacted so many people in your short year of life. You have opened our eyes to a world we didn't know much about but are eager to learn more each day. You have brought Daddy and I closer together and strengthened our love and marriage. You have taught us what it means to be strong and continue to fight. You have shown us how to truly smile from the joy deep within your soul. You have strengthened our faith. You have given us purpose and make us want to be better at all that we do. Thank you for the enormous impact you have had on us...and we are supposed to be the ones teaching you! :)
It is kind of crazy...I can't believe that you are already a year old but at the same time I feel like I have known you forever. I can't imagine life without you in it! You are our world, our inspiration and our dream come true. It is my promise to you that we will do everything in our power to support you, protect you, fight for you, and give you all you need to succeed. You are amazing! You will continue to defy the odds and exceed our expectations. It is my goal to make sure you always know that there are no limits...you can achieve what you put your mind to...you will do it all at your own pace. We love you Madi Lou...more than you know. Thank you for being you!
A few hours old
A few days old
A few days ago
It is kind of crazy...I can't believe that you are already a year old but at the same time I feel like I have known you forever. I can't imagine life without you in it! You are our world, our inspiration and our dream come true. It is my promise to you that we will do everything in our power to support you, protect you, fight for you, and give you all you need to succeed. You are amazing! You will continue to defy the odds and exceed our expectations. It is my goal to make sure you always know that there are no limits...you can achieve what you put your mind to...you will do it all at your own pace. We love you Madi Lou...more than you know. Thank you for being you!
A few hours old
A few days old
A few days ago
Wednesday, October 28, 2009
Pumpkin Patch
Last Sunday we took Madi on her first trip to the pumpkin patch. It rained quite a bit the day before but the weather stayed dry for us. The ground was still pretty wet out so we didn't get too many photos in the patch. Madi would have had a field day in the mud I'm sure. It was so much fun and I loved watching her observe everything going on and laughing in delight as we walked around searching for her perfect pumpkin. She really had a good time and managed to clap, smile and talk to everyone around us. Here are some pictures from our little adventure:
Friday, October 23, 2009
Down Syndrome Awareness Month
October is Down Syndrome Awareness month and although I waited until the end of the month, I definitely want to write a post. For those of you reading our blog who do not have a child/family member with down syndrome I want to take this opportunity to provide some info on down syndrome. Before Madi blessed our lives I really did not know anything about down syndrome except for the few encouters I had with people who have down syndrome. When Madi was 2 days old and the Dr's told us they suspected that Madi may have down syndrome I was so scared and literally felt like the world was crashing down on me. I was in shock and prayed with all my heart that they were wrong and the blod test would come back normal. It took a little while but we soon realized that Madi is perfect and exactly who she is supposed to be. She is not a chromosomal mistake but in fact a perfect creation and we are so blessed that God entrusted her to us. Here are some facts on down syndrome for those of you who would like to learn a little bit more:
- Down syndrome (also known as trisomy 21) occurs when individuals have 3 copies of the 21st chromosome. Typically people have 46 chromosomes (2 copies of all 23 chromosomes). People with down syndrome have 47 chromosomes. This happens at conception and is not a result of parents' activities during or before pregnancy.
- There are more than 400,000 people living with Down syndrome in the United States and it occurs in people of all races and economic levels.
- The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
- People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
- A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
- People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways
- All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
Please know that Dave and I are always open to talk about Down Syndrome and our experiences with Madi. We have learned so much in the past year and have met so many amazing people who have helped us in our journey. We hope that we can give back and educate the world on how special it is to have an extra chromosome.
Please take a look at this video from the National Down Syndrome Congress. I had to share...it's awesome!
Sunday, October 18, 2009
Happy Girl
We are back from Hawaii and I will be sure to post all about our trip (with pics) very soon. We had an amazing time and Madi was great. She was completely off of her schedule but was still very easy to travel with and truly was a trooper the whole time.
Over the last few weeks Madi has been perfecting clapping. She immediately starts clapping as soon as we start singing her new favorite song "If your happy and you know it clap your hands". I caught it on video tonight and had to share...I think she is hilarious. The best part was after I shot the video. I was showing the footage to Dave on the camera and Madi heard me singing on the video and started clapping and laughing. It was too cute! More updates soon.
Please excuse my wonderful singing! :)
Over the last few weeks Madi has been perfecting clapping. She immediately starts clapping as soon as we start singing her new favorite song "If your happy and you know it clap your hands". I caught it on video tonight and had to share...I think she is hilarious. The best part was after I shot the video. I was showing the footage to Dave on the camera and Madi heard me singing on the video and started clapping and laughing. It was too cute! More updates soon.
Please excuse my wonderful singing! :)
Monday, October 5, 2009
i did it!
My friend Jennifer from the blog Three's A Charm has created an amazing "i did it" campaign in honor of her son (and Madi's buddy) Joaquin. She created these " i did it" tees and is selling them for $21 in honor of Trisomy 21 (down syndrome). For every tee purchased she purchases a copy of the book Gifts 2, signs it with the name of the child who it was purchased for, and donates it to a local hospital, pediatrician office or genetic counselor in Sacramento. How cool is that! You can read more about the campaign on her blog Three's A Charm. The book Gifts 2 is an amazing compilation of short stories written by parents, grandparents, etc that share personal stories of how people with Down Syndrome enrich the world and Jennifer is a contributing author.
So, Madi has her i did it tee and I finally took some pics of her. We are so proud of her and all that she has accomplished. Having a child with down syndrome really has opened our eyes and made us truly appreciate all of the small victories in life! She is such a blessing and has introduced us to a community that we never knew we wanted to be a part of but are now so grateful that we are. Madi is now 11 months old and has done so much in that time! In honor of the "i did it" campaign, here are some of Madi's i did it's:
- Made it through and quickly recovered from open heart surgery and a staph infection
- Learned to roll very early and now rolls all over the house
- Sits up all on her own
- Has learned to drink from a straw
- Feeds herself
- Has learned the pincer grasp and uses it to carefully pick up her blueberries, cheerios, etc (her determination is so cute!)
- Gives kisses
- Is starting to wave
- Has done the sign for Mommy a few times (I think she is getting it!)
- Plays peekaboo
- Puts her arms in the air when you ask her "how big is Madi"
- Says dada, baba, lala, has said mama a few times...I'm obviously pushing for that one
- Has mastered the prone position and is now working on getting up on her knees
- Pivots in circles while on her tummy and is trying to scoot/crawl to get places
- Is the perfect yoga student and is more flexible than you can even imagine
- Manages to steal the attention and hearts of everyone she meets...she is quite the social butterfly!
We can't wait to watch her grow and develop and see all the "i did it's" she has in her future. I know she will accomplish all that she puts her mind to...she is an amazing little girl! Thanks Jennifer for this awesome campaign and giving us all a way to show the world that together we can do it!
Tuesday, September 29, 2009
A Little Behind
We have been a little behind on updates these last few weeks. We have had our fair share of illnesses make their way through our house...and it is only September! Hopefully we are done for the year. All three of us got the stomach flu a few weeks ago...starting with Madi, then me, then Dave. Thankfully Madi didn't seem to get it as bad as Dave and I (or maybe she is that much tougher than we are). I honestly don't think I have ever been so sick in my life...it was awful. We did all get it at separate times so we were able to rotate taking care of Madi. Once we all recovered from that I then got a sore throat/sinus infection that is just hanging around. I can't seem to kick it. I finally got some antibiotics after a week of suffering and am now starting to feel better. I have no idea what is going on...I am not usually one to be constantly sick. Oh well, such is life. Of course I am completely freaked out that Madi is going to get a cold which can easily cause more respiratory issues and trips to the ER again...but she has been doing well so far. It is pretty ironic that I am back to telling all of our friends and family how careful we need to be with Miss Madi during the flu season while Purelling their hands before they touch her...and I am the one who is sick! Ha! So the past few weeks have been fairly uneventful in our house. We did venture out to Sierra and Jason's engagement party last weekend. We are so excited for them and looking forward to the wedding in Mexico next April!! We also made it to Beth's 30th birthday party for a little while as well.
We are looking forward to participating in our first Buddy Walk in Seattle this Sunday. The Buddy Walk was started to promote community awareness and acceptance of people with Down Syndrome. There are going to be more than 280 walks taking place all across the nation this year. We have quite a few friends and family that will be joining us in "Walking With Madi"! If you are in the area...please let me know if you would like to join us...it is going to be a lot of fun! Of course I have to add a few pics of our sweet girl!
We are looking forward to participating in our first Buddy Walk in Seattle this Sunday. The Buddy Walk was started to promote community awareness and acceptance of people with Down Syndrome. There are going to be more than 280 walks taking place all across the nation this year. We have quite a few friends and family that will be joining us in "Walking With Madi"! If you are in the area...please let me know if you would like to join us...it is going to be a lot of fun! Of course I have to add a few pics of our sweet girl!
Starting her early
Wednesday, September 9, 2009
Saturday, September 5, 2009
Friday, September 4, 2009
Roadtrip to Montana!
Here we are in Great Falls Montana preparing for the Francisco-Kangas wedding. We decided to drive and turn this into a fun family road trip. Madi truly is an easy baby and great traveler so we figured it wouldn't be too bad. It's about a 10 hour drive to Great Falls and we have done one road trip with Madi to Sacramento when she was about 3 months old. Dave decided he had enough energy to start the drive so we left at about midnight on Wednesday. Madi literally slept the first 6 hours straight and woke up around 6:30 to eat (like I said she is a dream baby). We stopped at a rest stop and fed her and she immediately vomited all over me. Not too uncommon since she has reflux, but it has been well managed for a long time and we have had no problems. So we got all cleaned up, changed our clothes and hit the road again. She fell right back asleep for about another hour and then we decided to stop for breakfast in Missoula. When she woke up she puked again...hmm. As soon as she was done she was a happy little girl and acting like her normal sweet self. We then noticed that Dave's front tire of the truck was only half full. We had the truck serviced the day before we left so we figured it must have a leak. We decided it would be best to have it checked out at Less Schwab. They couldn't find a leak and figured the coil in the valve must have been stuck when they checked the pressure which caused a slow leak. So a quick stop for breakfast turned into a 3 hour delay in our trip. No big deal...better to be safe than sorry! We only had about 2 hours left in our trip but poor Madi had a rough time. We had to stop about 3 more times as Madi continued to vomit. I have come to the conclusion that she was car sick. As soon as she would get out of her car seat for a bit and get some fresh air she was fine. She has never had car issues before so I am not sure what was going on. We did decide to take Dave's truck which is an extremely bumpy ride. For those of you who have not seen the truck it is a F350, diesel, super duty, monster of a thing...a little too beastly and bumpy for our little princess! :) We are going to take our time going home and stay overnight in Spokane, so hopefully Madi will have an easier time. Needless to say, we may have to hold off on long trips in the truck for a little while! The truck does fit in quite well here in Montana.
We finally made it here and everything has been great ever since. Dave bought some sweet Wal-Mart style cowboy gear (pics will come soon) to wear around town and to the country themed rehearsal dinner tonight. Last night we went to a bar called the Sip-N-Dip. It is a dive bar that is attached to a hotel. The hotel swimming pool has a glass wall that it shares with the bar. At night the pool is closed and there is a girl dressed up as a mermaid that swims by the window for tips. It is hilarious and so weird all at the same time! There will be more to come of our adventures later!
We finally made it here and everything has been great ever since. Dave bought some sweet Wal-Mart style cowboy gear (pics will come soon) to wear around town and to the country themed rehearsal dinner tonight. Last night we went to a bar called the Sip-N-Dip. It is a dive bar that is attached to a hotel. The hotel swimming pool has a glass wall that it shares with the bar. At night the pool is closed and there is a girl dressed up as a mermaid that swims by the window for tips. It is hilarious and so weird all at the same time! There will be more to come of our adventures later!
Thursday, August 27, 2009
Cardiology Update
Madi had a follow-up appointment with her cardiologist today. Here is a quick review to catch everyone up on Madi and the status of her heart:
Madi had open heart surgery on May 21st to repair a complete AV Canal defect. The surgery was much more complicated than they thought but they were able to repair her defect. Lots of prayers, some miracle working by Dr Woods, and a tough fighter for a daughter got us through! A few days after surgery the valves began to slightly leak (no big deal...this is common). They were only SLIGHTLY leaking so we were told they would just monitor the situation and there was a good chance that she would never need surgery again as long as there was not an increase in the leaking. She has had quite a few echo's done in the past 3 months and all looks great...until today! Today we received some good news and some bad (well, we'll just say not so good) news. The valve on the left side (the most concerning side) is now actually leaking less. This is great news because the left side of the heart is the side that pumps blood to the body. We obviously want that fully functioning! :) Looking at her echo today, the leak on the right side has gotten a little worse and her heart is actually enlarged now...something that we have not seen. There is a slight VSD on the right side that has started to leak more. It could CLOSE ON IT'S OWN (I am putting that in caps because I truly believe in positive thinking) but if it doesn't they will need to go back in and repair it. The surgery would be less involved than the first time as they would only need to go into the right side but it would still be open heart surgery with the bypass machine, ventilator, and chest tubes...the works. Her Dr did say that if she does need to have surgery, they probably wouldn't do it for at least another 6 months.
So here we are again. I am not freaking out yet. Actually I think it is odd that I am staying somewhat calm about this. Maybe it's because we knew there was a chance this would happen. Maybe it's because we've been through it (and although it was the worst day of my life) we know what to expect. Maybe it's because we truly are helpless in this situation and can't do anything to influence the outcome either way. Maybe it's because I have seen what my little girl is capable of and I know she will make it through with a smile on her face. Who knows! The fact of the matter is I am on my hands and knees praying that it will CLOSE. I am hopeful that it will and until I hear differently, I am hanging on to that glimmer of hope. So, I am asking to once again start the prayer chains for Miss Madi. I truly appreciate the support and prayers that are sent our way. They have helped us get to this place today and they will help us get through to tomorrow. So we have a follow-up scheduled for 2 months and they will do another echo to see how the leak looks. The appointment is actually scheduled for October 29th...Madi's 1st birthday. Maybe that will bring us some luck! :)
Madi had open heart surgery on May 21st to repair a complete AV Canal defect. The surgery was much more complicated than they thought but they were able to repair her defect. Lots of prayers, some miracle working by Dr Woods, and a tough fighter for a daughter got us through! A few days after surgery the valves began to slightly leak (no big deal...this is common). They were only SLIGHTLY leaking so we were told they would just monitor the situation and there was a good chance that she would never need surgery again as long as there was not an increase in the leaking. She has had quite a few echo's done in the past 3 months and all looks great...until today! Today we received some good news and some bad (well, we'll just say not so good) news. The valve on the left side (the most concerning side) is now actually leaking less. This is great news because the left side of the heart is the side that pumps blood to the body. We obviously want that fully functioning! :) Looking at her echo today, the leak on the right side has gotten a little worse and her heart is actually enlarged now...something that we have not seen. There is a slight VSD on the right side that has started to leak more. It could CLOSE ON IT'S OWN (I am putting that in caps because I truly believe in positive thinking) but if it doesn't they will need to go back in and repair it. The surgery would be less involved than the first time as they would only need to go into the right side but it would still be open heart surgery with the bypass machine, ventilator, and chest tubes...the works. Her Dr did say that if she does need to have surgery, they probably wouldn't do it for at least another 6 months.
So here we are again. I am not freaking out yet. Actually I think it is odd that I am staying somewhat calm about this. Maybe it's because we knew there was a chance this would happen. Maybe it's because we've been through it (and although it was the worst day of my life) we know what to expect. Maybe it's because we truly are helpless in this situation and can't do anything to influence the outcome either way. Maybe it's because I have seen what my little girl is capable of and I know she will make it through with a smile on her face. Who knows! The fact of the matter is I am on my hands and knees praying that it will CLOSE. I am hopeful that it will and until I hear differently, I am hanging on to that glimmer of hope. So, I am asking to once again start the prayer chains for Miss Madi. I truly appreciate the support and prayers that are sent our way. They have helped us get to this place today and they will help us get through to tomorrow. So we have a follow-up scheduled for 2 months and they will do another echo to see how the leak looks. The appointment is actually scheduled for October 29th...Madi's 1st birthday. Maybe that will bring us some luck! :)
Wednesday, August 26, 2009
Our Angel
I am just so in love with this little girl!!! I feel so blessed that God trusted us to be the parents to such an amazing, "special" child. She has enriched our lives more than we could have imagined. The three of us have been through so much together already and we have come out stronger and more in love with one another. Thank you Madi for all that you have given us!!! We couldn't have asked for anything more.
Saturday, August 22, 2009
Summer Fun
Sorry to leave everybody hanging...Madi is doing much better! Her cardiologist bumped her lasix up to 3x a day and that did the trick. Within a few days she was breathing easier. I am so glad it didn't turn into a bigger issue. I have definitely learned that we still need to be germ freaks when it comes to Miss Madi. A typical cold to you and me is a lot worse for a heart baby with an underlying lung condition.
Madi now officially has 2 bottom teeth. They are both crooked and slant in opposite directions making an upside-down v! They are so cute...I will try and get a picture of them!
Madi has been a busy girl these past few weeks. She went swimming, took her first boat ride, floated on American Lake, went blackberry picking, and has gone on many walks and runs! We also went and spent the day with Aunt Sarah and cousin Mia. The girls actually play now and are constantly trying to poke, pull or suck on one another. Mia is scooting all over the place and Madi continues to steam roll across the room. It is pretty funny to watch them go. Madi did begin to "army crawl" a few days ago. It was very brief but she DID IT! I was not expecting it so it definitely surprised me. I swear this girl is going to scoot/crawl before she sits up on her own. I am so proud of her!
I do want to point out one thing that I absolutely LOVE about Madi that I often take for granted. She is such a cuddly little girl. When I pick her up she loves to just melt into me and literally wrap her arms around my neck and give me a huge hug. I know someday this may end so I am trying to make sure I appreciate every moment of it while I can. Oh how she melts my heart!!!Here are some pictures from a few weeks ago:
Madi now officially has 2 bottom teeth. They are both crooked and slant in opposite directions making an upside-down v! They are so cute...I will try and get a picture of them!
Madi has been a busy girl these past few weeks. She went swimming, took her first boat ride, floated on American Lake, went blackberry picking, and has gone on many walks and runs! We also went and spent the day with Aunt Sarah and cousin Mia. The girls actually play now and are constantly trying to poke, pull or suck on one another. Mia is scooting all over the place and Madi continues to steam roll across the room. It is pretty funny to watch them go. Madi did begin to "army crawl" a few days ago. It was very brief but she DID IT! I was not expecting it so it definitely surprised me. I swear this girl is going to scoot/crawl before she sits up on her own. I am so proud of her!
I do want to point out one thing that I absolutely LOVE about Madi that I often take for granted. She is such a cuddly little girl. When I pick her up she loves to just melt into me and literally wrap her arms around my neck and give me a huge hug. I know someday this may end so I am trying to make sure I appreciate every moment of it while I can. Oh how she melts my heart!!!Here are some pictures from a few weeks ago:
She is ready for the boat
Sunday, August 16, 2009
Trip To The ER
Yes that is right...we spent yesterday in the ER with Miss Madi! She came down with her first cold last Monday and was getting much better as the week went on. She woke up Saturday morning and was having a hard time breathing...something that is not totally uncommon for Madi. She was diagnosed with chronic lung disease after her heart surgery (which sounds much worse than it really is) but it has been getting better with time. On Saturday I knew she was working really hard to breath and you could hear the fluid built up in her lungs. We took her to her pediatrician's office and they checked her oxygen sats which were reading 85%...yikes! They have never been that low and since surgery she has been around 98%. The Dr recommended we take her straight to the ER. They were concerned she may have pneumonia. The ER had a more accurate sat machine and there she was reading 87-93% which is better than we thought but still not great. That was definitely a relief! They did a chest xray and ruled out pneumonia but her lungs do look worse. They are enflamed and have more fluid in the space surrounding the tissue. They gave her some IV lasix and after talking to her cardiologist, decided they felt comfortable letting her go home. When she was released from the ER her diagnosis was pulmonary edema and heart failure. WHAT...heart failure?!?!?! The Dr explained that heart failure sounds horrible but really it just means that her heart is overworked and therefore not functioning to it's full capacity. I thought the fear of heart failure was behind us now that she has had surgery! So, we will most likely be visiting the cardiologist and possibly pulmonologist tomorrow. She seems to be breathing a little easier today but is still struglging and has quite a bit of fluid in her lungs. Of course, Madi is still her happy little self. Even as she is struglging to get a good breath, she continues to smile and laugh. She amazes me everyday and is so much tougher than I could ever be!
I am so grateful she is okay and was able to come home but honestly I am a little frustrated right now. Just as she seems to be making great strides forward, we have to take a few steps back. When will she just get to be a HEALTHY baby?!?! I thought these issues would be resolved after her heart surgery...which I guess was wishful thinking! She has already been through so much...it just doesn't seem fair. I know it could be much worse and I truly am grateful for the health and happiness that she does have. Of course this also has an effect on her development. We were making huge strides with her gross motor development and I have noticed a setback just in the past few days. I know I need to be patient and focus on her health but it is hard to see her take steps backwards. I am trying my best to stay positive and focus on the fact that she WILL hit all the milestones at her own pace. I just sometimes wonder where she would be if she didn't have to deal with hear defects and chronic lung disease! I will keep you posted on how she is doing over the next few days. Please keep her in your prayers!!!
I will also post some fun summer pics from the past few weeks very soon.
I am so grateful she is okay and was able to come home but honestly I am a little frustrated right now. Just as she seems to be making great strides forward, we have to take a few steps back. When will she just get to be a HEALTHY baby?!?! I thought these issues would be resolved after her heart surgery...which I guess was wishful thinking! She has already been through so much...it just doesn't seem fair. I know it could be much worse and I truly am grateful for the health and happiness that she does have. Of course this also has an effect on her development. We were making huge strides with her gross motor development and I have noticed a setback just in the past few days. I know I need to be patient and focus on her health but it is hard to see her take steps backwards. I am trying my best to stay positive and focus on the fact that she WILL hit all the milestones at her own pace. I just sometimes wonder where she would be if she didn't have to deal with hear defects and chronic lung disease! I will keep you posted on how she is doing over the next few days. Please keep her in your prayers!!!
I will also post some fun summer pics from the past few weeks very soon.
Saturday, August 1, 2009
9 Months Old
Madi is now 9 months old and is doing great! She just got her first tooth yesterday. I knew it was close to coming in for a little while now but it finally popped its way through. So far she has done great with teething. She woke up once last night and once a few nights ago but was easily consoled and put back to sleep. It was either due to teething or the record setting heat we have experienced here...yes 104 last week. Don't forget that we don't have AC so we camped out downstairs for a few nights. Our upstairs ws at least 90 degrees at 10pm!!!
So Madi had her 9 month check up and here are her amazing stats:
Weight - 15lbs 6oz
Height - 26.5 inches
She is still our little peanut but is steadily growing! She IS starting to put on weight and grow...amazing what having a fixed heart does! Now that she is all healed up we are focused on working on her gross motor development. We knew she would have some motor setbacks from surgery but she has done so much better than I expected. We are still working on sitting and she is getting pretty close. It is amazing to sit back and reflect on all that she has been through in her short 9 months of life. She continues to amaze us and steal our hearts every day. She has developed such a fun personality...she really is a goofball these days.
Here are a few of her favoite things:
- Oliver (our 5 year old Beagle). She cracks up when she sees him and does all she can to grab him.
- Playing peekaboo! She puts a blanket over her own head and pulls it off, then cracks up when you say Boo.
- Any sort of clicking, popping, smacking noise you make with your mouth. She laughs and stares intently trying to mimick the noise you are making.
-Showing off how big she is. When you say "How Big is Madi?" she will put her hands in the air and smile to show you just how big she is!
- Singing...she even loves Mommy's voice!
- Sophie the Giraffe. For those of you who have no idea what I am talking about...Sophie is a rubber giraffe that pretty much looks like a dog toy. It is the absolute best teething toy I have found and she loves it.
- Drinking water out of a glass although most of it gets spit/drooled right back out.
- Cellphones...if one is anywhere in reach she will grab it
- Water...she is a water baby!
We have spent the last few days trying to stay cool. Madi has gone swimming a few times and absolutely loves the water. We need to get her into a swimming class! I was talking to her physical therapist and they are thinking of putting together a water play group for his early intervention kids. It would be taught by a physical therapist so it would be fun and therapy all in one!
Of course I had to post a few pics of Madi. She is getting cuter by the day!!!
So Madi had her 9 month check up and here are her amazing stats:
Weight - 15lbs 6oz
Height - 26.5 inches
She is still our little peanut but is steadily growing! She IS starting to put on weight and grow...amazing what having a fixed heart does! Now that she is all healed up we are focused on working on her gross motor development. We knew she would have some motor setbacks from surgery but she has done so much better than I expected. We are still working on sitting and she is getting pretty close. It is amazing to sit back and reflect on all that she has been through in her short 9 months of life. She continues to amaze us and steal our hearts every day. She has developed such a fun personality...she really is a goofball these days.
Here are a few of her favoite things:
- Oliver (our 5 year old Beagle). She cracks up when she sees him and does all she can to grab him.
- Playing peekaboo! She puts a blanket over her own head and pulls it off, then cracks up when you say Boo.
- Any sort of clicking, popping, smacking noise you make with your mouth. She laughs and stares intently trying to mimick the noise you are making.
-Showing off how big she is. When you say "How Big is Madi?" she will put her hands in the air and smile to show you just how big she is!
- Singing...she even loves Mommy's voice!
- Sophie the Giraffe. For those of you who have no idea what I am talking about...Sophie is a rubber giraffe that pretty much looks like a dog toy. It is the absolute best teething toy I have found and she loves it.
- Drinking water out of a glass although most of it gets spit/drooled right back out.
- Cellphones...if one is anywhere in reach she will grab it
- Water...she is a water baby!
We have spent the last few days trying to stay cool. Madi has gone swimming a few times and absolutely loves the water. We need to get her into a swimming class! I was talking to her physical therapist and they are thinking of putting together a water play group for his early intervention kids. It would be taught by a physical therapist so it would be fun and therapy all in one!
Of course I had to post a few pics of Madi. She is getting cuter by the day!!!
Saturday, July 18, 2009
Finally...We're Back!
It's been a while and quite a lot has happened in the past month. Madi took her first plane ride to Sacramento to visit family and friends over the 4th of July. Dave had to stay back and coach a baseball tournament so I decided to take Madi on her first plane ride...ALONE! One word describes Madi...awesome! She was amazingly perfect. She literally ate right when we got on the plane and then slept almost the entire way (both times). She woke up as we started our descent and put on a show for everyone with her babbles and giggles. Multiple people commented on how lucky I am to have such an easy baby...and they are right! We had a great time in Sacramento and enjoyed the Lichtenberger BBQ and firework show on the 4th. Madi and her cousin Mia also starred in the infamous "Govan Parade". For those of you who have no idea what I am talking about and never saw pics of Jason and I all decked out on the 4ht for the parade when we were kids, here is a brief explanation. There is a neighborhood parade every year on the 4th at the end of the block I grew up on. The kids decorate their bikes, strollers, skateboards, scooters, etc and race down the street and back while music plays and parents line the streets. It is amazing how many kids now participate. It was fun to have the girls together in their first parade. My brother and I were in the parade every year from age 5 to whenever we were too cool...who knows when that was! :)
It has been very hot here in the Northwest...I love it! We have been enjoying the summer and spending quite a bit of time outside. The running stroller is getting some good use these days. This morning Madi and I walked up to the farmer's market and got some peaches and butternut squash. I have been making Madi homemade baby food for a while now and she loves it. So far she has tried and loved: avocado, peaches, sweet potatoes, mango and squash. It is so easy to make her food and since we only feed her organic it makes it more affordable...gotta love that. Not to mention it tastes SO much better!
Madi is also fully recovered from her staph infection. It only took about 3 weeks or so to completely close and heal all the way. The scar is slightly wider at the top of the incision but it looks great. It is amazing how the body heals...it was a huge open wound and then just closed up on its own. They recommend that we keep it out of the sun for a full year so it doesn't stay dark forever. I massage it every day and rub vitamin E and a cream for scars on it which she seems to like.
Madi is changing and getting stronger everyday. She is "talking" and yelling a ton these days. She has found her voice and loves to make all sorts of noises. She now likes to growl which is pretty funny. She laughs all the time and truly is a happy baby. We can't imagine life without her. Here are some recent pics:
It has been very hot here in the Northwest...I love it! We have been enjoying the summer and spending quite a bit of time outside. The running stroller is getting some good use these days. This morning Madi and I walked up to the farmer's market and got some peaches and butternut squash. I have been making Madi homemade baby food for a while now and she loves it. So far she has tried and loved: avocado, peaches, sweet potatoes, mango and squash. It is so easy to make her food and since we only feed her organic it makes it more affordable...gotta love that. Not to mention it tastes SO much better!
Madi is also fully recovered from her staph infection. It only took about 3 weeks or so to completely close and heal all the way. The scar is slightly wider at the top of the incision but it looks great. It is amazing how the body heals...it was a huge open wound and then just closed up on its own. They recommend that we keep it out of the sun for a full year so it doesn't stay dark forever. I massage it every day and rub vitamin E and a cream for scars on it which she seems to like.
Madi is changing and getting stronger everyday. She is "talking" and yelling a ton these days. She has found her voice and loves to make all sorts of noises. She now likes to growl which is pretty funny. She laughs all the time and truly is a happy baby. We can't imagine life without her. Here are some recent pics:
Madi at physical therapy
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