a winter update

I am already failing at one of my New Year's Goals of updating the blog more... I want to document these kids and what our days are like. I'm horrible about working on scrapbooks or journaling, so this blog is about the only bit of information we have and I'm realizing that my memory isn't what it used to be! So much blurs together! I can't let "I'm always busy" keep getting in the way! So here goes an update...

Jace played basketball this late fall-winter. His team did really well, playing other area 3rd graders. As you can see, these guys never lack in the personality department and they are a fun group to watch play!

Miss Maddie loves to perform...always climbing up on things, singing and talking like a talk-show host! She entertains me daily!

She had her winter preschool program at the end of January. She remembered her line from "Snowmen at Night" and sang her cute "Snowflakes" song with her class (phew, always makes this mom-teacher happy when her own child is prepared and ready!) Her favorite thing to do in the winter is "to go sledding" she shared. Too bad we haven't been able to do that this year, hardly any snow!

Maddie loves playdates! She and cousin Jilly had a fun afternoon together, playing dress-up is their favorite.

Sam is a Ham! His cousin Grady actually called him "Ham" for awhile when he couldn't say his "sss" and I'm afraid it might have stuck with us...it's cute. Sam loves to be silly, but he's quite shy with others. His hair is wild, he's started signing "more" "food" and "milk". He also says "Dorda" (Dora) quite clear as well as Mama, Dada, "ooice" (juice) and "nanana" (No,No,No). He blows everyone a kiss, he runs around fast with an agressive right-arm swing, he loves to empty-out cupboards and drawers and he is loved and spoiled by everyone!

Duck Hunter Jace = eating duck two weekends in a row...yuck!

Caden! He is such a great little skiier...he is fast and has no fear. I love watching him, heart palpitations and all! Cade loves us to call him "squirrelly" and he is just that! Always lots of energy but such a tender big brother to Maddie and Sam. I've loved watching Cade & Maddie's frienship blossom over this winter. Cade just finished "Little Dribblers" basketball but I didn't get a pic...

 We've gotten in quite a bit of skiing this winter. The boys are doing awesome and really enjoy it. They have to "wait" for mom often at the bottom of the slopes. We recently hit a very sunny, 45 degree day at Mission Ridge. Thanks to the inversion...home was in the 20's and sunshine never felt so good! Bryan and I have loved the time we've gotten on the hills with Cade & Jace. Fun memories have been made!

seeking with a whole heart

There are certain dates that resonate with us...birth days, our wedding day, the day we lose someone we love. These days are life-changing, life-altering if you will. It changes the path we're on-- adding to it or taking something away from the life we knew. Change occurs whether we willed it to happen or didn't. January 2, 2008 is one of those days for me. My life was altered forever more on this day and I did not see it coming nor did I ever dream of this.

Five years ago today, we were given our most life-changing news. Our unborn baby had a very complicated, serious heart defect. It was such unknown territory for us. We were not anticipating this news, hadn't even considered it going into that "re-do" ultrasound...now looking back, we were so naive about it all. Completely blind-sided is how I felt that day. You can read more about that day here.

The days months following the news are a bit of a fog for me. I found myself in more of a survival mode...just getting from point A to point B. There was so much to learn, so much to process and in such a short time. I had two little busy boys to also occupy my time as well as trying to accept this life change which added hospital stays, surgeries, endless doctor appointments, stepping back from what I was used to doing--trying to control and plan everything in my life. But I learned so much from being so tired and feeling helpless in it all...I learned what was important. I learned to let so much go, to let God handle it...I learned to rely on Him and on those who were there for me and my family, letting them help and serve when we needed it most and I must say, our burden was lifted. I learned that time is precious and fragile. Good health, being born healthy, is such a gift...something I would never take for granted again. I witnessed and lived in sadness and joy at the very same time. I learned to not plan too far ahead and just enjoy now. I learned just how powerful prayer can be. I learned to walk by faith. I learned hope. I live in this hope now.

As I watched Maddie peacefully sleep in her bed tonight, I was overwhelmed with emotion...thinking back to how lost, scared and completely heartbroken I was five years ago tonight...not knowing if I'd even get to hold my sweet baby with the broken heart. Tonight I kissed and held that sweet baby. She's 4, almost 5 if you ask her, she's pink, loves princesses and singing, has energy now!, bosses her brothers around and has grown into the most beautiful little girl, inside & out, than I could have ever dreamed of. In five years, my emotions have taken a 180. I couldn't feel more grateful or more fulfilled. Maddie's broken heart is not a mistake, in fact, I cringe when I hear the word "defect" now. She was made perfect in HIS image. She's such a blessing and I could not have made this growth any other way. I'm so thankful for this path we're on, I'm especially grateful that the Lord has gotten me here.

Jeremiah 29:11-13
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."

Merry Christmas!

Wishing you all a wonderful Christmas!

Papa

 

Bryan's dad, our beloved 'Papa', passed away on Friday, Dec. 14th at 10:00 am at his home, surrounded by his loving wife and children. Funeral services will be Thursday, Dec. 20th at 11:00 am at the LDS Church in Royal Camp. Pa is already very missed and will forever remain in our hearts...

plans have changed...

Yesterday we took Maddie over to Seattle for a cardiology appt. with Dr.C and an echo. The plan was to have a check-up, exam and prepare ourselves for a 10:00 heart cath this morning. We had our hotel booked, boys' care figured out here at home and pretty much packed up the whole house preparing to be gone a couple of days. God worked some of His magic yesterday... Maddie's echo pictures were very clear (which is rare since her Fontan), showing Dr C those areas of concern that could only be helped through a heart cath. Her pulmonary arteries look as if they've grown, they are staying wide-open and her Fontan looked beautiful. She still has a little hole (the fenestration which he referred to as a pin-dot) in the conduit but after talking to Dr.J, her cath doc, they didn't feel Maddie would benefit from closing it...she's dependent on it and why mess with things if it's working for her? She has higher pressures and needs the pop-off for blood flow. Her aortic valve is still leaking but its mild so just something to watch but nothing to attend to. And, drum roll please, her O2 sats were 89%, which we haven't seen in a very long time! SO...Dr. C left it up to Bryan and I if we wanted to go ahead with the cath or not. It was an easy decision for us- NO. If all that Dr. J would be going after were the collateral vessels, we can wait. Dr. C did say it's inevitable that she'll need to go back in the cath lab in the next couple of years for some maintenance but we can wait until she shows us more signs, one being her sats staying in the low 80's. This would prove that those collaterals are really stealing blood flow. There really is no rhyme or reason to why her sats fluctuate in his opinion...it could be when she's run-down, trying to fight a bug or hers just will ebb and flow in the 80's. At home, she sats anywhere between 84-88%. Dr. C did say she is one of the lowest satters, possibly the lowest satting Fontan he sees in his practice. But she's doing well, and we'll take it. We will follow-up in 4-6 months with her unless something pops up, unexpected of course. I am amazed by Maddie. She is truly a little miracle and continues to bring so much joy and surprise to our lives! In this world of CHD, things can change, very quickly, so we'll take this! Hearing some good news is so good for our hearts right now. As we were leaving her appt., she was so funny. She tipped her head back, put her hand on her hips and told an audience of nurses (she's a little adored by the staff at Children's) "I don't have to have a cath anymore!" Spunky, yes. I believe this spunk has helped get her this far.

Getting this news yesterday really felt like an answer to prayer. Bryan's dad is barely hanging on. This past month (really, months) has been so difficult for our family...anticipating the inevitable, watching him die is very, very hard. Papa is one tough guy, he has willed himself to keeping on and his determination has been amazing to watch; a little frustrating, but really TOUGH sums him up. I'm so glad my kids have that in their genes. Having Maddie's heart cath on the horizon has been a struggle- wondering at times if God is really hearing our prayers, how are we going to do this with all that we have on our plates...well, I can say without a doubt that HE DOES listen. His timing is perfect and it isn't always our timing but knowing that He works all things for His good is such a blessing. The news yesterday brought some much needed light to a dark time we're experiencing. Restoring some faith, looking to him, THANKING HIM...this is what everyone needed.

But I can say, whether we were in the pre-op area waiting for her procedure or home getting the boys ready for school this morning, my hope and trust remains in Him. He has shown us a tender mercy in one of the most difficult seasons of our life, losing a parent, and we thank Him for this mercy. He is there, He willingly shines His grace upon us, always. I thank God for this time, as difficult as its been.

Romans 8:28

^"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Miss Maddie doing what she does best...loving on baby brother!

the boy's birthdays

Jace turned 9 in August!

 So our family of 6 went bowling & to the archade which was super fun and for his first time bowling, Jace was pretty darn good!

 Sam enjoying his "ride" at the bowling ally

 His birthday theme was a movie party, watching "The Three Stooges"...which is funny to some, particularly 9 year olds

 He also had a family party this year and added a few buddies to the mix, fun times!

 While the big kids watched the movie, these three little girlie cousins gave each other make-overs!

 Happy 9th Birthday to an awesome, fun-loving boy! Happiness just leaks out of this guy. His smile is surely contagious...We love you Jacers and are very proud of you!

Then we celebrated Daddy's birthday at Grandma & Grandpa Allred's. A few days later, Bryan and I were able to get away for the afternoon and attend the Monday night Seahawks v. Packers game with Mike & Lesa. Bryan's been a Seahawk fan for 35 years. Yes, he's very loyal.

 At the end of September, Cade turned 7. Jace just wants world-peace in every picture!

 Cade posing so sweetly for his birthday photos. He requested a "Power Miner Lego party" which was a challenge but I think I pulled it off and it met his high standards :) Caden is a super smart kiddo who adds a lot of creativity and affection to our family. This little man can build any lego set you put in front of him and creates some pretty cool creations on his own. We love you Caders!

 This was the first year Cade's had friends over for a birthday party and a fun group it was!

 We celebrated that night with a family party...yes, this family knows how to party!

Then Sam turned one in October! He started crashing walking right before he turned 11 months and has had a bruise or two on his forehead since. This boy falls more than any of our other kids, he's surely the quickest little bugger and his bumps prove it! He's independent & keeps busy cruising around and opening cupboards and drawers all. day. long.

I can't believe he's already a year old! Sam is such a sweet, loving baby...he's quiet, mostly layed back and petite, weighing 19 lbs. 11 oz and 29 inches at his 1 year appt. We sure love our little Sammy and feel so blessed to have him as our caboose! Love, love our Sam-Sam!

 We had a fun little monster themed party for him... see, there is our peace sign again!

 He wasn't that into his monster cake...just took little bites, no cake smash for this guy.

 

Flarp from the goodie bags was our entertainment for the night... these little monsters kept us giggling with their sneezes, gross noises and antics!

 

cancelled cath

Maddie's heart cath was scheduled for this Friday but unfortunately, we've had to cancel it due to her having a little head cold. I know...sounds crazy. Our life has become so normal with her but in preparing for her 7th heart cath, we knew keeping her healthy was a priority. Easy to say, hard to do. I teach preschool, I have lectured those mother's enough and they are all very respectful of the "well-child policy" so we tried there. We tried limiting her going into grocery stores, public places, etc. but she still came down with a stinking cold. It's frustrating and times like these remind me that I am raising a child with a chronic illness. Her heart will never be fixed. Catching a simple cold then having a heart cath is not good- her risk for infection increases and the policy is to cancel. I'm grateful they always have Maddie in mind, her medical team is amazing.

As of now, her cath is rescheduled for Dec. 11th. Dr. Johnston is calling it an interventional cath as he's hoping to close her fenestration (hole created in her heart used as a pop-off for blood flow), as well as looking for & taking care of any collateral vessels as well as making sure her pulmonary arteries are wide-opened and growing well. After her Fontan, we knew she'd need to go back to the cath lab...just the timing was the question. After three open-heart surgeries and six heart catheterizations, we should be pros at this but it doesn't get easier. She knows she has to go back and when we've talked about it, she's anxious and tears up. I swear the older she gets, the harder this is.

She needs to have a good 2-3 week window of health- being clear of any illness. It feels impossible. We have four children, two of which attend public school. I teach 11 other children two days of week, preschool in our home. She takes ballet once a week. We spend lots of time with family and cousins. Can we just put her in a bubble and carry on with life? Bryan and I differ on how much we want to expose her...wished this was easier at times. What a balance it is between having her experience a normal life but compromising her health in achieving that goal. Prayers for keeping Miss Maddie healthy are always appreciated. Just want to get this cath over with. 28 days to go.