Maddie's Many Faces

Look at little miss and her photo shoot this morning! Finally, I caught a big smile...dimples and all!

We're doing well...the boys and I have had a little head cold and Maddie shows a tinge of it too. She's still eating and sleeping well and acting normal, so I'm not stressed. Just watching her very close. There's really no visible sign, you can just hear a tiny bit of congestion here and there. I'm hoping this is the extent of it. Maddie is really starting to respond. Yes, she's a bit behind but we have to take into account that she was born a little over a month early and laid in a hospital bed the first 18 days of her life...this can set a girl back a bit! We're still staying home...although we've made it to a couple of family functions this past week. It really is nice to get out and "show" our daughter off! Although we're keeping Maddie from public places where there is a lot of people traffic. With the measles outbreak in our county, I'm not going to risk going to the store with her! I've enjoyed being at home with nothing planned. The boys entertain me with their play...here they are on their "pirate ship" yesterday.

When Jace and Cade play well together, it's so nice!!! They can't wait for "MJ Watson" (aka Maddie) to actually join them in playing Spiderman someday!

Got Milk?

Ok...I'm running out of things to blog about here. Maddie won't smile for the camera, so I just had to post this since my life (and Maddie's) revolves around breastmilk! Pumping every 3-4 hours around the clock then feeding that "liquid gold" to her every 3 hours is exhausting after a while! Not to mention washing all of the paraphernalia that goes with bottle feeding and pumping! You mom's out there that are doing this can empathize!I could seriously start a "hate to pump" club! Just look at our stock pile...we may need to invest in another freezer! This picture's really not giving you the full-effect of this stockpile either and since I'm so anal, I've kept a log of all of my pumping since March 16th. The grand calculation as of today is, get ready...2,017 ounces of milk! MOOOO, yes I'm a cow! Of course she's consumed lots of this already.

Many have asked if Maddie is able to nurse. She can for a little while (mainly for the bonding) but she also burns more calories nursing and we need to know exactly what she's getting, so we bottle feed and fortify the milk with a little bit of Enfamil formula. She gets "amped" up breastmilk at 24 calories/oz. And I know some of you have been impressed with how I've been able to keep up with the blog, find time for thank you's and announcements, emails, play DJ on blog, etc....well, I have to mention that while "hooked up" to the pump, I can multi-task with 1 hand! You have to do something to pass the time and this is about all I'm coordinated enough to do!


Here's a look at my indoor "bathing beauty"...and a look at her scar. Some have asked what it looks like...we think she has a nice zipper!

Cardiology Appt. #3 Update

Madison had her third follow-up Cardiology appointment at Children's yesterday. Everything is just great! She's chunking right up- 8 lbs. 15 oz. and she's 20 3/4 inches in height, 10th percentile now! If we were to take her gestational age (she'd only be 1 month old, since she was born at 35 weeks) she's in the 25th%, so she's doing just awesome. We couldn't be happier. On a cardiology note, her EKG was fine, her Echo looked good (although she was a wiggle worm) and from what they could see, her shunt looks wide and open. What a relief. Her SATS are beginning to drop though, they were 78 yesterday. Normally she hangs out around 80-82, so we could have just caught her at a low time too. She was taken off her Captopril medicine, which is an ace inhibitor and helps her heart function. I was a little nervous when hearing this, but Dr. Vernon said it's really unnecessary now with where her SAT levels are. So Maddie is only taking her 1/4 asprin daily (blood thinner) and no other meds! I know, it's amazing. Her doctor did want to order a blood test for her to see if she should be getting any supplements, like iron. So we'll be doing that in the next week, other than that, we don't go back for over a month! I hope I can make it to June 25th...it's very exciting that she doesn't need to be seen more often but also a bit scary. We were sad yesterday to say goodbye to our doctor...she's going on maternity leave until mid-Sept, so we'll be seeing a new doctor (Dr. Sesslar) now until she comes back. I'm so glad we have the SAT monitor here at home so if I'm unsure until then, I can check her. It's painless, just a little band that fits around her foot. The SAT level determines how much oxygen is in her blood, and because Maddie's has a lot of mixing of blue and red blood (oxygenated and unoxygenated) her SATS are lower. The number can tell us many things...like if her shunt could be narrowing or if she's having an SVT (arrhythmia, which she hasn't had any), if she's going into heart failure, etc. A normal person's SAT is 99-100. So, heart disease kids (like Maddie) never have a SAT level of 100 but after all 3 surgeries, they can be upper 90's which is great in comparison to 78 (like now). Her next surgery is also dependent on what her SATS are doing. When they are trending downwards and reach the 60's, it's time for the next surgery, along with how her heart looks, the pressures, etc. A cath procedure will be done before her next surgery to determine exactly what needs to be done and it is the most accurate way to tell heart function. They normally like to do the Bi-directional Glenn (her next surgery) around 4-6 months and when the child weighs close to 12 lbs. So, we're thinking that if everything keeps going the way it is, Maddie should have hers in August or September. The doctors also take into consideration getting her surgery done before flu and RSV season hits. Great timing for us! A friend of mine sent me a link to Dr. Cohen's (Chief Cardiothoracic Surgeon at Children's)grand rounds presentation on single ventricle heart defects (what Maddie has). It's an hour long and Maddie's condition, Pulmonary Atresia, is described at 8 minutes into it. Scroll down to the very bottom of our blog and click under Websites with information on Maddie's CHD on VIDEO: Single Ventricle Options to watch it. It's very interesting.

I feel incredibly grateful for Maddie's wonderful recovery...she's done exceptionally well and we couldn't have asked for more. If you would have asked me while I was pregnant what I was expecting with our heart baby, you would have gotten a different story...I never fathomed it could be this good. I had read so many stories of struggling, fragile babies and Maddie just doesn't fit this mold. We are so lucky and I thank God for my sweet baby and her little heart...He truly gave us one tough, determined little angel! We have been blessed beyond measure. So we continue to walk by faith and trust in His plan...and right now, I'm lovin' the plan!!! Thanks for your continued prayers as well...I know this has helped in the wonderful outcome we've had. Prayer really works! I truly believe in this. Keep them coming!!!

Pretty in Pink

Maddie and I had our first social outing yesterday for my sister-in-law Jessica's baby shower. The best part was getting Maddie ready...she wore her first dress! She looked so adorable and as I was getting her dressed, I couldn't stop giggling the whole time...finally a REAL doll to dress! What fun! It was held outside at my sister-in-law, Sybil's house, in the 93 degree heat, although we were lucky to have a nice breeze and we sat in the shade. It was so great to spend time with my aunts, grandma and sister-in-laws. Jess got a lot of cool gifts and her baby girl (due August 9th) is going to be one "blinged" out baby! I can't wait for Jessica to get to play dolls too!

And what were the boys doing while Maddie and I were socializing you might ask? MOWING the horse pasture...in their Spiderman suits of course! Click on the picture for a close-up view! Good times.

She's 2 Months Old!

As we were going to bed last night, I mentioned to Bryan that Maddie will be 2 months old...and he says,"is that it?" Sometimes it feels as if 2 years has passed instead of just 2 months since her birth. So here's her birth announcement (took me 2 months to get them out!) and a couple of recent pictures of my "stingy smiler"- she is so stubborn with them! No gummy smile picture for you yet! I have to remind myself that she was born a month early, so those consistent smiles may take awhile still. We go see Uncle Lowell (Dr. Allred) for her well-child exam and shots tomorrow...poor baby, but I'm happy she can get her immunizations. This means she's healthy and doing good! Happy 2 months to our sweetie girl!

Nany 9-1-1

Surprise and Happy Mother's Day, Nany! When Jace was born, we dubbed my mom "Nany" since we had called her mother, Nany, we wanted to carry on the tradition. Over the past months, my mom...aka Nany...has been our greatest help. I've called her my own personal, Nany 9-1-1...(Jo Jo from the real Nanny 911 show has nothing on Sus!) I just want to say thank you on this Mother's Day for EVERYTHING you've done over the past months. Many of you have commented on the strength that I've had and how well I've handled all of this...well, I learned this from my mama, as she learned it from hers, and Maddie's already proven she has this trait as well! Mom, you are my greatest example, my counselor and my best friend. You know me better than anyone else and you're always there to listen...plus you just know when and what to say, (even if its not what I always want to hear!)you still are teaching me. I'm incredibly grateful for you and thank God everyday for having you as my mother. I appreciate the sacrifices you've made for me...and still continue to do. Not until I became a mother, did I realize what a tough job it is and my mom made it look so easy! I just hope and pray that Maddie and I can have that special relationship you and I have and you and my Nany had- Thank you Mama, I love you very much and I'm so grateful for YOU! Have a wonderful Mother's Day!


Jace riding "so sweetly" on his horsie...she would have NEVER let us do this!

Caden at 9 mo. with Nany (need a more recent picture!)

Nany with her first granddaughter...Little Miss Maddie!

"Mom"

A baby asked God, "They tell me you are sending me to earth
tomorrow, but how am I am going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of
you."

The child furthers inquired, "But tell me, here in heaven I don't
have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you.
And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand
when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet
words you will ever hear, and with much patience and care, your
angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach
you how to pray."

"Who will protect me?"
God said, "Your angel will defend you even if it means risking its
life."

"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will
teach you the way to come back to Me, even though I will always be
next to you."

At that moment there was much peace in Heaven, but voices from Earth
could be heard and the child hurriedly asked, "God, if I am to leave
now, please tell me my angel's name."

You will simply call her, "Mom."

3.68 Kilos, What?

Maddie's appointment went really well yesterday. She weighed 3.68 kilos...that's 8 lbs. 1 oz. with the conversion, a 1 lb. 5 oz. gain in exactly 3 weeks, 21 ounces in 20 days! Children's does everything in the metric system so we're always a little confused when hearing her numbers since we have to convert it. It becomes quite the math war between Bryan and I. We're very happy with this weight then Bryan says, "this is what she probably would have weighed at birth if she had been full-term." Oh well, 8 weeks later she's 8 pounds. The best part is, she's gaining! She's a feeder and a grower, just like we want her to be. No echo was done, just an EKG. Her SATS are hanging around 80, so no change there either. Her feeds are good, volume keeps increasing weekly, she's staying at 24 cal (fortified breastmilk) and eating every 3 hours and also on demand. As for the ride over, we're working on it...the binky usually took care of her "outbursts". We talked a lot to Dr. Vernon about what possible outcomes her heart disease could bring for her future- which is nice to know what "could/could not" happen but can also be very scary. I'm still naive enough to think that when we go to the appointment, the doctors are going to give me a miracle diagnosis of Maddie's heart. I've been taking this one day at a time and yesterday decided to "go there" and found myself in tears last night. It's difficult to accept that she'll never have a normal heart or be cured of her defect...our bodies are just not meant to pump with only 1 side of the heart functioning. Sometimes it's hard to imagine that anything is wrong with her, she's just been doing so well. So I have to hold onto the good and enjoy every day because with all things in life, change happens. We go back for our next visit in 2 weeks. I think I'll hold off on asking so many questions next time.

(Heather (Daniel's mom)- if you read this, would you email or call me? I'd love to get in touch with you and see how Maddie's little ICU roomie is doing! 509-346-2821)

A Smile!

"Little Miss Serious" and I were having a conversation this morning and while she was staring right at me and I was yacking away, she SMILED! Finally! We've been practicing and I just knew she was going to do it any day now! Talk about melt my heart! Catching it on camera is going to be tricky...this is as good as it's gonna get for now. Jace and Cade were great "distractors" to my tactics of getting her to smile...

Tomorrow we go over to Children's at the Bellevue Clinic for her Cardiology appointment. Looking forward to seeing how her little heart is working on the echo and seeing what she weighs, bets anyone??? She weighed 6 lbs 13 oz. three weeks ago... I'm also hoping Maddie and her "enemy" (the carseat) can become friends tomorrow on our 2 hour drive to the west side and there will be no tears!

What I Need to Say

The boys! Maddie and I are so lucky with the boys in our lives. Bryan made it clear to me that he "does not want to be on the blog" but I just had to put this cute picture of them. Sorry, Bry. Since I'm planning to publish this blog into a book to document this journey, it's not complete without you in it. I just need to say THANK YOU for everything. Thanks for putting up with me, thanks for helping out so much with the kids and thanks for your calmness through all of this. Along with being so busy on the farm, shipping cattle and staying up nights to do orchard frost control, you're always constant. As my brother calls our relationship, "slow and steady", even when our world has changed- I'm so grateful for you and I know that I can always count on your love, your patience and your wisdom. I love you.

Jace and Cade couldn't be more proud of their baby sister...and very proud to be BIG brothers. I was a little worried about how they would handle all of this change but they've done really well.

Jace is such an awesome big brother to Cade, entertaining him in all ways, pouring drinks for him, making peanut butter sandwiches, and kissing those owies that he created. Let's just say that Jace has taken up the slack around here when I'm feeding Maddie or "hooked up" to pump. He truly grew up while we were in Seattle...I feel like my 4 year old is now 14! Jace has had to make some sacrifices (like missing a month of preschool) but he's been so good about it and seems to understand why. But, we're happy to say that he's coming back soon to Miss Becky's to finish the year of preschool (as long as everyone's healthy)! He is the "Purell Policeman" around here...my germaphobia has worn off on him? Yikes! His sweet smile and take charge approach are such wonderful attributes in our home. Did I mention that he just adores his baby sister??? Finding the binky and getting diapers and wipes are his fortay! I'm so proud of you, Jacers!

Caden...our little Spiderman. He's adjusted to Maddie but his little spot as "the baby" has been taken by a high-maintenance little lovie. He's learning patience little by little. Cade's our alarm clock in the morning and I so enjoy our cuddle time together. Caden changed overnight as well when Maddie arrived...no longer looked or acted like my baby. Funny how they do that when a new one comes?!? We're so blessed with Cade's sweet, laid back nature and his great sense of humor. He's developed a new "giggle" that he uses after saying anything now. It's pretty hilarious. Our funny man, tough guy and little Spidey is such a blessing. And he can't get enough of Maddie...her eyes go wide when he sings "tinka tinka itta sta" to her! And I'm pretty excited that your little sister looks like she may have beautiful, long eyelashes just like you, bud!