Maddie's BFF!

We had such a wonderful day yesterday. The boys went to spend the day at Nany's while Maddie and I drove down to the Tri-Cities to see our friends, The Maxwell's. Trent and Susie's daughter, Teagan, was born a week after Maddie with Hypoplastic Left Heart Syndrome (the left side of her heart didn't develop properly (opposite of Maddie's CHD)). So put together, our girls have a good, whole heart! Their second and third surgeries are the same to 'fix' their hearts, and they're even on the same time frame for their surgeries at Children's! Anyway, while we were in the NICU, I saw Trent walking through one day and just knew I knew him from somewhere. We ended up bumping into him again and realized that we had high school and college rodeoed together! What a small world. Since that day at the hospital, we've kept in touch. Susie and I have emailed and talked on the phone weekly and this was our first 'playdate' with our girls.

It is such a blessing that we met up. Having someone who shares all of the same feelings, worries, hopes and dreams I have for my daughter is so comforting. No one can completely understand this until you're in it. There is so much to learn with the heart defects that the two of us are conquering the medical world together! I so enjoyed our visit and we're planning our next get-together soon. I don't think anyone could have gotten a word in with the two of us gabbing away all afternoon!!! The girls are both so adorable and what a sweet relationship they're going to share as they grow up...I'm so grateful that Maddie will have someone who will understand her, and her 'BFF' (Best Friend Forever) is only a little over an hour away! Watch out rodeo world, can't you just see these two galloping around on their ponies together! Here's some pictures from our afternoon. Teagan's blog, as well as our other heart friends, is on the left side of this page under "Kindred Hearts". God does work in mysterious ways...putting certain people in our paths who will help us through our trials and only add to the joy in our life! I'm very grateful for the Maxwell's as well as the other heart friends we've met so far in this journey!

Jace's Preschool Graduation

Last night we had Jace's preschool graduation. This was his first year, only 2 days a week. He really enjoyed it, learned lots, made some new friends and got to play with many cousins there. What a fun night out tonight was for us (although Maddie missed out and stayed at home with Aunt Kerry.) She so enjoyed being held the whole 1 1/2 hours we were gone! Thanks Ker for coming over!

Jace "advancing" on to another year at Steps Ahead Preschool!

Not so happy about posing with mom & dad. It's crazy to think that Bryan & I went to preschool together MANY years ago, and now here we are with our little preschooler! Wow time flies!

Loves posing with his favorite teacher, Mrs. Becky! Thanks for a FUN year...looking forward to another one!

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!