Cardiology Appt.

 

Maddie Moo had an appointment back in November...and I'm a month late posting about it. We've just been relishing in the fact that she had no alarms or "wait and see's" on this visit! She had a fantastic visit! I think this was the best report she's ever been given.

Her sats were the highest we've ever seen in clinic, even with her fenestration still open, the pulse ox read 93%!!! Dr. C was pleased with her echo, blood pressure and ekg. He even talked about spreading her visits out to once a year but decided we should have 1 more good appointment like this before doing that so in 6 months she'll have another cardiology appointment. She continues to grow like a weed, shocking us all with being in the 94% for height and weight. If only her brothers took after her? I joke that the extra calories we fed her to get her to grow as a a baby have finally kicked in, causing some fast growth in this girl! It just reassures us that her heart likes it's plumbing and tall genetics have kicked in.

What I took away most from this appointment other than her awesome numbers, was witnessing how grown-up and mature Maddie has become at her dr. visits. She carried on a sweet conversation with Dr. C, answering his questions and visiting about her experiences in 1st grade. One question she had for him was if she could play basketball...she was recently told by a peer at school that she "can't play because of her heart" which has bothered her. When she came to me with this, I explained that I thought she could but the best person to ask would be her Doctor. Luckily, we had an appt. the following week, so it was a perfect time for her to talk to him about it. I absolutely loved his answer... "Maddie, you can play and participate in almost any sport  I can think of" then he winked at me and whispered, "lets not take up kick boxing or anything like that." She sure puffed up when he gave her the go-ahead. She's been wanting to play basketball, like her big brothers do, and she is so excited to be doing that on Saturday mornings now. I love that my HS coach and good friend are the coaches.

As we watch Maddie grow (oh how she's grown!) and become this dear little girl, we stand amazed. Amazed at His goodness and at His provision over her life. I know I've said this a million times but we never expected life to be this good. We are so very blessed. Thank you for following her journey and for your prayers on her behalf. They have been answered!

Our household's happenings

Somebody around here turned 3 yesterday! This cute little boy is as naughty as he is adorable most of the time. He's our spicy one and we love every bit of him. Sam is very strong willed, determined, focused, and independent! Never a dull moment with this one :)

 Mr. Sam is very into Paw Patrol or "Patrol" as he refers to it. We celebrated with just the 7 of us last night. It was relaxing, quiet and very enjoyable. He loved all of the attention and sang "Happy Birthday" to himself. When he opened up this gift, he threw his arms in the air and shouted "Oh My Gosh!" It was precious. I soaked him in last night...he also told me "Mama, I love you so so much" when I tucked him in. Oh my heart.

Wow! All of our kids!!! I'm a lucky mom.

 This was a few weeks ago but it's too cute not to share, he looks like a little bird ready to eat :)

 Maddie is enjoying being the only girl...she's a great helper and loves all of her brothers and they think she's pretty neat too.

 My football/baby loving boys. These two are really good buds, their relationship is pretty awesome most of the time.

 Cade celebrated his 9th birthday a couple of weeks after Luke was born...he enjoyed having all of our family over, playing some football with his cousins and of course, building with his new lego sets. He's a master builder for sure...Caden is kind, serious and smart. I receive lots of compliments on how nice he is, he's an easy kid to have around.  

 Luke is now 5 weeks old! He had a little procedure yesterday at the ENT's office...had to get his tongue clipped, which will hopefully make a difference with his nursing! Out of our kids, 3 have been born with very tight tongues, 2 have needed clipped. He weighed 10 lbs. 8 oz. yesterday! 

Last Saturday night, the boys had their "Black & Gold" Football Game...it was a cold evening but fun watching all of our Royal football players. I love that Bryan coaches- he does an awesome job with the offense and really enjoys it. Football in our community is kind of a big deal, I'm glad he's invested in it and thrilled that the boys love to play. We are starting basketball now, they'll overlap with their football schedule for 2 weeks...life continues to march on for us!

No. 5

Finally a post!

I can't believe our caboose is already a month old...

Luke Bryan (not named after the country music star, don't even know a song that guy sings) just minutes old... he weighed 8 lbs. 7 oz. and was 20.5 inches length, born by a scheduled c-section at 8:03 am one month ago today. A healthy baby boy, what a blessing!

 Love at first sight...Luke and mommy meet

In post-op recovery, getting to hold him for the first time

 What a sweetheart! We are IN LOVE with him. The kids have loved having a baby in the house, they're all really helpful, fight over who's holding him and thank God, Sam has finally warmed up to him ;). He was on ignore mode for the first couple of weeks! Maddie is quite the little mother and it's such a joy watching the older ones interact with him.

So far, fingers crossed, Luke is a really good baby. He's had some trouble nursing and lost quite a bit of weight that first week so I've been both pumping and nursing. He's quite a combination of all of our kids, we see glimpses of each one in him but he has his own look as well. The little fuzz of hair that he has is brown, darker than our other babes. I hope he continues with his laid back nature as being the last one in this crew of kids, he's going to need to be easy going! Things can get crazy around here!

I've enjoyed stepping back from everything I am usually involved in, staying at home and just lapping this little guy in. I was quite emotional that first week at home, my hormones were going crazy. So glad that has passed! Recovery has been smooth for me, just some sleep deprivation that goes with having a newborn, all is great!

 Our lives are full! Besides school and apple harvest, there's football for the older boys which  Bryan's coaching, dance for Maddie, bible club, 4-H for the boys, and scouts. Our plate is always full. We've had lots of help and have been spoiled with wonderful meals, visits and gifts for this sweet boy. Our family of 7 feels complete (I can't believe I have 5 kids, a basketball team!) and I am so, so thankful this little man has joined our family. More to come...

Fontanniversary & a heart re-check

waiting after her echo to see Dr. C

Today marks 3 years since this girlie's had heart surgery. We call this her "Fontanniversary" and try to recognize it in some way as it's a special day. May 24, 2011 was the day she completed the three-staged surgical repair on her heart, having her third open-heart surgery called the Fontan. Tonight we'll celebrate with chocolate cupcakes and her choice of movie, which I've been informed is "Beauty and the Beast" (the boys will be so thrilled!) 

In fitting fashion, we made a trip over to Seattle yesterday for a quick heart "re-check"...over the past couple weeks she's been extra tired, her sats have fluctuated between the upper 70's-mid 80's and we've noticed more blueness than we have in a long time. I'm glad she and I made the trip over. After an echo, Dr. C commented that she's developed more collateral vessels and when they can be seen on echo, they're usually quite significant (or we just got lucky) but they're also tricky to figure out where they're robbing blood flow from/or dumping it in. She's struggled with growing collateral's in the past, the question remains do we do something about them as he believes they'll just continue to grow. Some kids just grow them, Maddie is one of those kids. Her sats were 87-89% in his office, which is great & within her norm, so as of now, he'd like to wait. If she begins to trend down and stay down with her O2 saturation's, then she'll have to have it addressed in the cath lab and hopefully they'll plug her fenestration while in there. She still has some mixing of unoxygenated/oxygenated blood which causes her sats to be lower than if she didn't have a hole in her Fontan conduit. The best part of the day yesterday was just spending time one-on-one time with my girl-chatting during the drive, shopping at the outlets in North Bend, and having a nice lunch at one of our favorite places.

Subbing in Maddie's Kindergarten Class!

Little did I know that this girl would teach me so much...Having a child with a life-threatening condition has changed, stretched and strengthened me. It hasn't happened over night, accepting the unknowns of Maddie's future is difficult, but it has thankfully brought me closer to God than anything else I've experienced. I'm incredibly, eternally grateful. 

Happy Fontanniversary Maddie, you continue to amaze me each and every day! I love you so much!

Easter & a baby on the way...

Easter 2014 ~ We enjoyed a wonderful church service then hosted Easter dinner at our home with Bryan's family and my folks. Kids enjoyed an egg hunt and baseball game together! 

  

Our family of 6...soon to be 7! Yes, we're expecting!!! I'm 18 weeks along, due Sept. 22nd but will most likely have to have a c-section again (our hospital doesn't do VBAC) so baby #5 will arrive sometime around the week of Sept. 15th. My 20 week ultrasound is on May 8th and we're planning to find out the baby's sex this time around...we need to shuffle some kids around and paint over pink walls if its a boy plus I feel like I need to start getting prepared! Maddie's already telling people it's a girl, so I keep giving her talks "if this baby is a boy, you're going to love having another brother, right?!?" I'm not sure she's convinced...

Life is busy as usual...Bryan with orchards in bloom and frost control, PTO for me, running kids all over: baseball twice a week for Jace in Moses Lake, soccer twice a week for Maddie, dance for Maddie, Cade & Jace are almost finished up with scouts for the school year, and Caden has been itching to get down and ride his horse at Nany & Ba's. We may have a cowboy after all...he's been begging me to teach him how to rope. Love it! And then there's Sam...this boy is t-r-o-u-b-l-e. He's into everything and I mean, EVERYTHING!!! He's quite the mess maker- markers, paint, anything he can get his hands onto and then creates masterpieces everywhere. It's a wonder he's only made one ER visit in his two 1/2 years of life...he recently opened up the car door at a baseball game and fell smack onto his head on pavement. We rushed him to the ER and luckily, a little glue fixed him right up and thankfully, no head injury. Oh boy! I think Maddie has a valid point on wanting a baby sis this time around. On the flip-side, Sam is such a cuddly, loving little boy...he has the cutest little voice, really nice manners saying "tanktoo" for everything, and has a great belly laugh. We love him to pieces and he's my little partner around here. We feel incredibly blessed with our four kiddos and really look forward to adding one more to the mix!

Cardiology & the Zoo!

Maddie had her 6 month follow-up cardiology appt on Monday in Seattle so Nany joined us and we set out for an overnight, little spring break get-away. I'm still in shock a bit as this was the best "report" we've ever been given after an appointment!!! Dr. C didn't have any bombs to drop about her heart, he thought she's looking great and doing remarkable! I would agree and we feel so blessed by this great news. She was satting 88, still has her fenestration and there are no plans on closing it, her BP was 95/53, and she's still growing! Her pulmonary arteries look great and he mentioned that if you didn't know her history with PA stenosis/hypoplasia, you'd never guess they've been a sore subject these past 6 years on what to do with them. As for the jets that were seen on her Nov. echo, Dr. C couldn't see them this time so he's sure they had to be an imaging error. Huge relief. 

After her appt, I ran up to the new ICU wing (so fancy) and visited a heart mama friend, Devon. Her daughter, Karlee 5 yrs, had a transplant at 3 months old and recently had a whirlwind weekend, ended up having to have surgery on her intestines/bowel where a mass was found. Long story short, this tough little heart kiddo now has Stage 4 Lymphoma. It is completely heartbreaking. The strength Karlee and her family has is amazing. She's started chemo and is making improvements each day. We're praying for her recovery and healing. Please join us in praying for Karlee and her parents... 

At the beginning of this journey with Maddie, Bryan sweetly said when I was complaining/crying about all of the trips we'll have to make over here, "just think of all of the shopping trips you can make out of coming over for her appointments"...he was right. He probably regrets saying that now! We do really look forward to our Seattle appointment trips! We enjoyed eating out, a little shopping at U Village and outlets (Maddie loves shopping), swimming at the hotel pool and the zoo before heading back to the country... here's Miss Maddie posing with the zoo's "PeaHock" as she called it.

Nany was telling Maddie that Peacocks make a really loud, yelp sound so she imitated one and this guy wanted to impress...he yelped back at us and strutted his stuff. Too funny!

 Sam doesn't pose or smile much for pictures, he is pointing to lion tamer big sis though...

 And the carousel was probably her favorite. Smiling the entire way... 

Sammer and I, he was a little scared so we ended up riding double...

It's such a relief having this appointment behind us. Maddie starts soccer on Monday and we're getting busy with Jace's baseball games in Moses Lake each week as well as farming. The boys have been working this spring break with Bryan, putting in pipe, shoveling trenches, and putting in a sprinkler system. It's been a beautiful week, time to head outside!

Bry & Jace

The H-Team in Action

My goal of posting each day of CHD week failed...I'm not as faithful to the blog as I once was. Life is so busy with four kids! We enjoyed a little ski trip/waterpark vacation at Silver Mt. in Idaho the last few days so that interrupted my blogging time. So, I'll leave you with a very fun video that my friend Angie shared with me. Loved it! Love "The H Team" and we're so grateful they've saved our daughter's life. Happy Hearts Week!

in memory of Papa

There's a hallway at Children's that's always sobering when walking to the cafeteria from the floor...plaques line the walls with names and names-Seattle Children's Memorial Wall. We've walked this long hallway hundreds of times. After Bryan's dad passed away, in lieu of flowers, the family asked for donations to be sent to Seattle Children's in honor of Randy. So in May, when we had Maddie's cardiology appointment, we walked that hallway again, holding hands with a healthy, skipping, little blonde beauty to look for Papa's name.

It's an honor having his name in such a special place and will be a long-lasting reminder of his legacy for years to come. Our entire family's gratitude to Seattle Children's is never-ending...

kindred hearts

One of the perks of being a heart family is having other heart families in our lives. Here's a few pics of some fun adventures with our heart buddies last year... as life gets busier for us, we don't get together as much as we'd like but enjoy keeping in touch still. Watching these first two heart friends grow has been a huge blessing in our lives. 

Visiting Natalie and Angie at the Ronald McDonald House in Seattle after Natalie's Fontan last spring. We enjoyed some time at the Pacific Science Center together, now whenever I see a monarch butterfly, I think of you girls!! And whenever it snows and I want to complain about it, I think of you as well...my Alaska friends!

Maddie & Teagie being goof-balls this August. After a day of school shopping, we met Susie, her mom and the kids at Fro-Yo. These two girls are quite the pair and time always flies when we're with the Maxwells.

This fall, Susie (Teagan's mom) and Kelsey (Mason's mom) joined myself, my mom, my aunt and cousins, and a bunch of Royal friends at the Women of Faith Conference in Tacoma. It was a time of laughter and tears for sure...attending this type of event with women going through/feeling the same emotions and having the same thoughts on raising a child like you is theraputic and bonding, for sure. I also love that our three kiddos all see Dr. C as their cardiologist at Children's too!

Jump Rope for Heart 2013

Last year, the PTO helped our PE teacher put on our Elementary School's first Jump Rope for Heart Event...it was a huge success, raising nearly $6000 for the American Heart Association! Our elementary school has been doing the money raising campaign for years, so having an event the kids could participate in was important. I had the awesome opportunity of helping to organize the event where 2nd-5th grade students enjoyed exercise centers, healthy snacks, prizes and jump roping in the gym after school. Whoo, the sweat! I'd also put together an awareness video for the kids to watch which showcased all of the familiar faces they see each and every day at school who've been affected by heart disease either themselves or with a family member. Students worked on earning pledges prior to the event and all of our proceeds went to AHA. It was a super, fun time and we look forward to helping out with another Jump Rope for Heart in 2014! Here's Jace enjoying his exercise...

the tables could have been turned...

Did you know that for 1 in 10 babies born with a heart defect, it's a fatal one? Maddie IS that 1...without intervention, she would have died within a few hours or days after birth. We were fortunate to have been prenatally diagnosed but there are many families out there who bring home their new baby, thinking all is well and they are left broken hearted and wondering why when their baby suddenly passes away. If you are pregnant or know someone who is...take these 6 questions with you to your mid-pregnancy ultrasound.

1. Do you see 4 chambers in the baby's heart?
2. Are there two upper chambers (atria) each with a valve controlling blood flow out of them?
3. Are there two lower chambers (ventricles) each with a valve controlling blood flow out of them?
4. Do the two vessels leaving the heart cross each other as they exit?
5. Is there an intact wall between chambers?
6. Is everything else with the heart look normal?

From experience, most ultrasound techs prefer to not answer questions as they work but by even just asking these, it may make them pay a little closer attention as they scan away. Once your baby is born, ask for Pulse Oximetry Testing. It is not mandated in every state and it's not a routine test in Washington State. It's painless, cheap and takes only a few minutes. Most importantly, the reading of your baby's oxygen levels can pinpoint the most severe, fatal heart defects. 

Lastly, CHD can effect anyone. We have no family history of heart defects and most of the time, it's not genetic. A perfectly, healthy pregnant mother who did everything 'right' can still give birth to a baby with a broken heart. It happened to us. So after you bring your baby home from the hospital, here are some signs to watch for...

1. Does your baby tire easily during feeding?
2. Is your baby cold to the touch?
3. Does your baby sweat around his forehead?
4. Is your baby turning blue, especially around the mouth, nose, and on his hands and feet?
5. Is your baby having trouble feeding?

Unfortunately, a vast majority of CHD's are undetected before a baby is born. Remember, CHD is the #1 birth defect, affecting 40,000 births in the United States and 1 million worldwide each year. It is the leading cause of all infant deaths in the United States, yet despite great advances in screening and diagnoses, a vast majority are still left undetected and can go unnoticed for a long time, well until heart damage has progressed to cause symptoms. A child may be in his 20's-30's before learning of her heart defect or may collapse on the field or court, sending her to the ER to learn that she was born with a CHD. Many parents don't learn of their child's heart condition until after reading the coroners report. Raise Awareness...Spread Hope!

It's CHD Awareness Week!

It's been a little over 6 years since I heard the words in that dark ultrasound room, "Your baby has a Congenital Heart Defect"... I had no clue of what CHD was. Six years later, I live with a survivor. A fighter. She lives each day of her life with only half of a beating heart. Simply amazing. We are incredibly blessed.

Miss Maddie relaxing in Hawaii, Thanksgiving 2013

I have several unfinished posts about our family's happenings, and I really need to get those on here but with CHD Awareness Week and National Wear Red Day today, I'm going to try to continue the tradition of posting something heart related each day this week.

Life is good for us...our Heart Hero is doing amazing! I'm passionate about spreading awareness of CHD so stay tuned as there will be more to come...and thank you for following our journey.