Friday, November 13, 2009

6 Month Cardiology Check

Braden had his six month cardiology appointment on Friday at the outreach clinic here in town. He weighed 17 lbs. 11 oz. The cardiologist listened to Braden's heart and thought it sounded great, no murmur. The lungs sounded good too, with even breathing on both sides. We asked to check the October x-ray from Children's to see if Braden's diaphragm had gone down. Though still elevated some, it is better than the last check. The good news is that it obviously is not interfering with activity or breathing.

The appointment went so well that the doctor feels Braden doesn't need another cardiology appointment until next year at this time. The pacemaker checks will continue more frequently, with call in checks every 2 months and actual clinic visits every 6 months. Except for the pacemaker, his heart is fully functioning. Praise the Lord for the good reports. We are so thrilled!

The holidays are coming up and we are looking forward to celebrating our blessings at Thanksgiving. We have so much to be grateful for. It will never cease to amaze us how different this year is from last. Life felt so fragile last year, and it is, but at least this year we feel we can breathe. We aren't watching Braden like a hawk. We are living again. It feels good. Thank you God.

Monday, November 9, 2009

Happy 1st Birthday!

Our baby boy turned one on Sunday, November 8. We can't believe a year has gone by since his birth and all the adventure his life has brought to ours! Our celebration included a bouncy castle to keep all the cousins busy and happy, a salad lunch balanced with yummy desserts and coffee, and a very chocolaty one year old boy who thoroughly enjoyed his first cupcake. It was a very joyful day for our family, immediate and extended, as we remembered how far the Lord has brought our little man in the course of the past year. We put out a photo album chronicling the journey. There were some tough pictures in there, post surgery heart-wrenchers. It is good to remember though because to look at him today, you'd never know. His chest scars are still quite significant of course, but looking better all the time.

Here are Braden's latest accomplishments:

Fake sneezing: He says "Ah Ah Ah, Ahmmm!"; Waving bye-bye "Bah"; Signing please and up; "Mamma"; Fastest TP Unroller in the West; Crawling up stairs and walking the furniture.

The 12 month appointment went well with our pediatrician. Though still on the "mini" side in terms of weight, his length and head circumference actually are on the growth curve. Go Braden! Since little guy is so active and energetic, his weight is not a concern, it just appears to be normal "Braden".
We are grateful to Jesus for walking along side of us on our journey over this past year; it has been harder than anything we have ever faced before, really stripped us down to the foundation of our faith. We've learned that we can trust Him even when we don't understand what He is doing or why. Because we know Jesus is in control, we look towards the future with hope. There is a feeling of anticipation as we consider the great things God will do in Braden's life and in the life of our family. God is good and He is faithful! Thank you Lord for Your miracles and for teaching us to trust You in ways we never knew we could.
Enjoy the pictures of our wonderful son!

Monday, October 5, 2009

Pacemaker Check

Braden had his 6 month pacemaker check at Children's today. His pacer is still checked over the phone every other month, but we get to go to Seattle for these bi-yearly checks like we had today. It was strange to drive onto the property this morning; Darth and I experienced a flood of emotions. We had our middle daughter and Braden, the other two girls had colds and had to stay away with their germs (they shared them with Darth's mom instead!). After checking in, we had a delicious cafeteria breakfast and headed down a floor to wait. (The breakfast actually was great, there is a lot of variety to choose from. We just had to eat there SO MANY TIMES during the hospitalization that it has taken us a while to want to eat there again.) Sissy went to the sibling playroom and Braden, Darth, and I started off the series of appointments with a chest x-ray. So grateful for Children's. They are so geared for kids (obviously), that it was a relatively quick and not-too-upsetting experience for baby. We have had our share of x-rays with Braden so this time was much appreciated.

Next we went in for the vitals: weight, height, blood pressure. I think he was somewhere around 17 and a half pounds. It was in kilograms and I don't make that conversion in my head yet!

Now off to the exam room. We had an amazing tech do the speediest EKG ever. It was over before it began. Darth and I were watching her get out all the wires and both thought, "How is Braden going to do with this?" He has such busy hands now that we envisioned him pulling off the leads as fast as she placed them.

Another tech came in to do the pacer check: more leads, more holding still. Braden did great with this test too.

The cardiologist came in to debrief with us. Basically, all looks great. Braden's pacemaker battery is full, meaning that he isn't using up a lot of battery at this point. Good news because it puts battery replacement that much farther away on the horizon. The test results showed that he still has an underlying rate, but it is very slow, more like a sleeping rate than an activity one. This has shown up in the past and was confirmed again today. It is a comfort to know that even though he needs the pacemaker at this point, the heart could still beat without it. The communciation just isn't working from atrium to ventricle. Still praying . . . !

Thanks for all your continued support. God is still getting the glory from this little wonderful Braden boy! We are grateful for His blessings.

-Jenni & Darth

Friday, October 2, 2009

Fall News

We are living at full speed these days. Braden is enjoying going to all his sisters' soccer games and school events. Soon he will be more quarantined as the "buggies" and viruses start emerging. Since he is crawling and putting everything into his mouth, keeping him germ-free is a challenge. Braden did pick up a small cold, but has remained his happy-go-lucky self. He can be up at all hours of the night and still be sweet and active the next day. Can't say the same for mom and dad.

Braden has popped through both top teeth, with a sizable gap. It will likely resolve, but he has a slight hill-billy look. Very cute. He has also become very chatty with his adorable baby vocabulary. Just this week he started signing "please" during meal time. I think his "please" was to have another bite of mommy's ice cream birthday cake.

Pacemaker checks and routine well baby appointments are all the excitement Braden has had lately. We are definitely enjoying the normalcy. Braden has a pacer check at Childrens' Seattle on Monday. Please continue to pray with us for a miracle healing. We know God is able and are praying that He is willing. This pacemaker issue continues to stretch our faith in the trust department.

We aren't sure if Braden will qualify for the RSV shot again this year. He is doing so well it is not likely. We are just continuing to pray that the Lord will protect him this fall and winter from sickness. It is definitely more challenging to have a mobile baby stay germ free, a rather overwhelming undertaking. So glad we can take these concerns to Jesus. We are doing our part to keep exposure down, but we do have to keep living life as normally as possible. The fact is, he is going to get a hundred kisses daily from his sisters and there's not a lot we can do about that. The girls just can't help themselves. Oh, Braden is also giving kisses now, super wet and slobbery ones. Adorable!

Saturday, September 5, 2009


Braden is turning 10 months old in just days---so much to report! He started crawling several weeks ago and is super proud of himself. FREEDOM!!!! He is eating finger foods and enjoys them much better than yucky baby food. Currently Braden weighs somewhere between 16-17 pounds, continuing to be on the small side weight-wise, but comes in more on the average side in the length category. Just this past week, he has been pulling himself up on EVERYTHING, actually getting "stuck" standing in his crib, crying, because he should actually be sleeping. "How do I get down?!" Teeth! The bottom two are in and the top ones should be breaking through any time. "The better to bite you with, my dear . . . "

Personality wise, Braden is still a happy camper, quick to smile and laugh, very content and mellow. He is such an easy baby. Right now we are working with him on sleeping through the night and he is showing great tenacity for how long he will fight to wear us down. We are confident he will get it, but we miss sleep. At least I think we do . . . I seem to remember feeling rested at some point in my life . . .

A sad first to report: Braden got his first bee sting several weeks ago. He was in his stroller and all we can figure out is the bee landed on the stroller tray and Braden grabbed it. The bee was gone, but the stinger still in. SAD!!!! No allergic reaction though, thankfully. His finger got pretty swollen, but even with the discomfort I was amazed at how he "took it like a (little) man". What a trooper!

This summer Braden went to the beach, the water park, the water slides, both grandparents' houses, Orcas Island, my brother's wedding, a petting farm, and Leavenworth. It was a "let's stay close to home and do little short trips" kind of summer. We enjoyed celebrating life together as a family of six, all the while being especially thankful for our healthy, thriving baby boy.

As we approach the fall, we are gearing up for how to keep the family and specifically little guy healthy. Looking forward to those flu shots . . . A scoop of ice cream for every shot seems to work as a great motivator for little girls. It works better than "let's do it for Braden", though that will come into play. Baskin Robbins anyone?! We hate being paranoid about germs but it is a definite reality with all the fun bugs going around. This is an area where we have to do our best and just trust the Lord with every day. Some things we can control and some we can't, but we do have to LIVE LIFE and not be completely house bound! This would be an area to pray for our family and especially Braden: a healthy fall and winter, spring for that matter too!

Thank you for your continued prayers, well wishes, and interest in Braden progress. We are amazed by our miracle baby and our amazing, loving God. His mercies to our family still awe us. Concerns for the future all filter through the Lord's faithfulness of the past. He was with us then, and will be with us today and tomorrow. It is good to live with that peace of mind.

-Jenni and family

Thursday, July 2, 2009


Okay, so most of you have realized that Braden must be doing well and we are back to our crazy, busy "normal", since there are NO blog entries for the entire month of June! And you are correct. Braden is doing just wonderful. He now weighs over 14 pounds, is sitting up, clapping, blowing raspberries, and working on a very interesting crawl. It involves hiking his bottom into the air, while his head and chest are down and scooping forward on his face. (?) We will be working on that. He is eating simple foods, his favorites being sweet potatoes, peas with olive oil (recommended by the pediatrician for extra calories), and pureed fruits. Braden will turn 8 months old on the eighth of this month. He is finally into 6-9 month clothes! His next appointment is a phone-in pacer check, which happens every two months. He doesn't see the cardiologist again until November. Wow!

The girls are out of school for summer break and the house is very noisy these days. Braden's naps aren't as long due to the constant action. He is well entertained however. I can't believe the sisters haven't developed major bald patches on the sides of their heads. He pulls our handfuls of hair all the time. Thankfully they have hair to spare, but the vacuum is getting a work out.

This is an interesting season for us. It was just one year ago that we found out about Braden's heart defects and our world changed forever. We are feeling rather emotional---emotions of gratitude, and yet at the same time, remembering is bringing back emotions we were feeling then but were too in shock to deal with.

Today we can say we have a beautiful little boy who is a miracle. He is the happiest little guy, it just amazes us how joyful he is. Our girls have grown so much over the past year as well, and the power of prayer has really been cemented into their little minds. They know Jesus healed their brother.

We have been taking oodles of pictures but are not organized enough to manage to post them, so feel free to check out Braden's latest photo shoot, with cameo appearances of the Creek girls, Thank you for your continued interest in our son and your prayers for him and our family. We serve a mighty God and anything is possible with Him.

Jenni and family

Tuesday, May 26, 2009

More Good News

On Thursday May 21, Braden had another physical therapy session. The PT was very impressed with how well he was doing with his fine and gross motor development. Braden is sitting independently now, doing amazingly well with balance, toppling over periodically when reaching for a toy. During the appointment the PT said that skill, sitting without support, puts baby Braden right at age-appropriate development, even a bit ahead! (I hadn't even realized he could balance by himself until the girls had pointed it out to me a few days earlier. Way to go mom!) Braden doesn't have to see the PT every month now. She will just check in, see if we have any concerns, and then take it from there. (happy sigh...)

Braden has been off heart meds for nearly two weeks. He had an appointment today for a non-heart related issue, but I asked the pediatrician to check for any concerns that might show a negative reaction to being off the diuretics. None! His weight was 13 lbs. 4 oz. We go back in a month for another check, but other than that it looks like our calendar won't be full of doctor appointments anymore. No tears shed on that point. We are quickly approaching the end of the school year and all the fun and busyness that follows. We treasure every day. God is good.

Friday, May 15, 2009

Celebration Time, Come On!

Well, today was Braden's cardiology check-up. To get right to the point, it was the shortest appointment we have had for him EVER. After the normal check-in by the nurse, the doctor came in, listened to his heart and said it sounded "boring"! (Boring is good.) No echo or EKG needed today. Braden doesn't have to be seen again for six months AND gets to discontinue his medications. Wah-hoo! The chest x-ray showed the diaphragm still slightly elevated beyond normal, but lung expansion was good, no signs of decompression.

Thank you Lord for your faithfulness. Thank you for your healing touch on our precious boy. We praise your Name! All glory to Jesus! Our hearts are full of gratitude and tomorrow, as we celebrate our youngest daughter's sixth birthday with our family members, we will be celebrating LIFE and the goodness of God. There's a party goin' on right here. . . !

Tuesday, May 12, 2009

Six Month Check-up

Braden had his 6 month check up yesterday. This had been his longest stretch of time between appointments and I was eager to know his weight. He was 12 lbs. 10 oz. and I have to admit to being surprised and initially disappointed. (I really need to quit asking other people how much their baby weighs. Duh, they are ALL bigger and heavier and Braden's "normal" is just that, Braden's! Asking just causes me to compare him and feel anxious about something I really don't need to worry about.) I guess I just am concerned that the nursing is too hard for him and burning off too many calories or that he needs a higher caloric intake or more fluids. I was all ready to head to "guilt land" and the good doctor helped me ground myself with reality. I am so grateful for a pediatrician who loves the Lord. He was so reassuring about Braden's growth, noting his bright eyes and inquisitive manner. He showed me that baby Braden's weight gain is following the curve, it's just underneath it! His length, however, was actually in the 19th percentile and his head was somewhere in that area too. So, overall great appointment, Braden took his shots like a trooper and that was that. We just keep on keeping on!

Mother's Day was a treat, celebrating with my wonderful husband and FOUR kids. We ate out at our favorite Mexican restaurant and then I opened sweet cards and gifts from all. (Braden is a great little shopper! ) It was an emotional day as a mommy to count my blessings, especially the little baby boy one.

Braden started cereal last week and isn't too wild about it, gags on it actually. Watching him eat is great big sister entertainment, by the way. Who needs TV?! He has also started something that we affectionately call his "war cry". It is like he has discovered he has a big voice and can make a BIG noise that is louder than all the other noises put together. Its really hideous, kind of a grating half shriek, half yell. If you're lucky, you may even get to hear it for yourself. Hopefully not during prayer time during church service, but maybe!

Tuesday, May 5, 2009

May Update

May is finally here. Braden turns 6 months old this upcoming Friday. He is turning into a roly-poly with gotta-pinch-'em cheeks. I can't believe a tooth hasn't pushed through yet. He is working hard and really taking teething like a little man.

The girls have each taken a turn dressing Braden lately, with a lot of mommy supervision, and it is hilarious. I should hope they appreciate my baby dressing skills after trying to get clothes on their wiggly brother. It is good entertainment for sisters and brother because they giggle their way through it and he just can't get enough of watching them. So sweet.

Braden went to his first Apple Blossom parade on Saturday. He did great but was unimpressed overall. His teething toys were more interesting and he even took a cat nap. I had placed ear plugs in his ears so the noise didn't bother him. He did look especially cute in his Mariners baseball cap. Another successful family outing.

His first over the phone pacemaker check is coming up in mid-May. It is so easy to forget he has a pacemaker. It hit me again right out of the blue the other day and I found myself struggling with trust and acceptance of God's plan over mine. The whole pacer issue still doesn't make sense but I know Christ is so in control of this crazy life thing. Braden is just so little to have a pacemaker for heaven's sake! BUT, we continue to pray that his heart will begin to function again without the unit and will continue to do so until Jesus tells us otherwise! Please pray with us about this. Our girls pray with sincere hearts every night for their brother to not need his pacemaker anymore. It is a beautiful thing, the faith of a child, the faith God wants me to have and I fight against with my "reasons". If anything this experience has done for our family, it is definitely a much bigger understanding of the goodness of God and that we can trust Him. Even just this week He came through once again in providing the exact amount of money we needed for a repair on our heat pump. Amazing!


Tuesday, April 28, 2009

New Accomplishments

Since Braden's appointments are really starting to lessen, we are actually forgetting to update on his progress. He is doing so well! His newest accomplishments are sitting with support, flipping from tummy to back, and discovering how to make a noisy slurping sound by sucking his bottom lip. He keeps practicing that last one, so he won't forget how to do it. Our little girls think this is especially hilarious.

Last week Braden had his monthly physical therapy session. The therapist was pleased with his progress and gave us some activities to work with him on, like encouraging exploration of toys that make sound (cause and effect, curiosity). She also wants him to build his core muscles while supported sitting and to work on going from back to tummy.

We don't know Braden's current weight, but he is sure eating a lot. His appetite has grown. He has started grabbing whoever is holding him by the hair, whiskers, neck skin, whatever!, with both hands and sucking on their face. Kind of like a slimy kiss but it really means "Feed me now!"

Tuesday, April 14, 2009

Five Months Old

Braden turned five months old last week. Amazing! Here's some of the latest . . .

Over the past weeks we have seen baby make great progress with his neck strength. Braden is gaining endurance on his tummy and holds his head up much longer now. So cute! His physical therapy starts next week and I hope the therapist sees improvement from her last observations.

Braden likes being held in a supported sitting position now, really enjoying being part of family time around the dining table. He sits and observes the chaos of mealtimes with a lot of interest. We are very entertaining for him. Braden also really likes it when his sisters do the "Banana" cheer they learned at Mega Kids Sports Camp. He is learning that if he squawks, they will do it again. Only 5 months old and bossing the older sisters around already.

Braden went to his first egg hunt and attended a church service for the first time this past holiday weekend. It was a monumental feat to get all of us to church. Darth was there already so I was outnumbered, but I conquered, thank you very much. No, we weren't on time, but that is besides the point. It was scary to take Braden to such a large social gathering. He just hasn't been out. I kept him in his carrier the majority of the time and that discouraged touching. Braden had another fever last week and more cold symptoms, so continuing to assertively protect him is beneficial. God is giving me strength in these socially awkward situations. Saying "look but don't touch" is easier to say to kids than to adults.

Because his neck is getting so strong, Braden can now be carried face out in the front pack carrier. The soft material of the Moby wrap is great for him and comfortable for me. He went through Costco on Monday loving life and looking super cute. Outings are so exciting for him because he just hasn't been out! And who doesn't love Costco?! (We lead such an exciting life.)

I continue to be very content in my current role as Braden's mommy, nurse, therapist, and teacher. Focusing on his development is so important right now. The slower pace of stepping back from too many commitments is refreshing. I am choosing to enjoy this season with little precious one because it will pass quickly and then life will get hurried and harried again. I am blessed to be able to stay home with my kids.

More updates soon. Thanks for your continued prayers for Braden and our family.

Friday, April 3, 2009

Too Much of a Good Thing!

Our in-home care nurse came today and "discharged" Braden. He is doing so well that he doesn't need close monitoring anymore. We will miss Nurse Michelle, but what great news! Braden weighed 11 lbs. 4 oz. today. We were advised that it is time to cut back the calories. Mr. Chubs gets only 24 calories now instead of 28. Yea Braden and thank you Lord!

Thursday, April 2, 2009

Pacemaker Check-up

On Sunday, March 29, we packed up four kids to head over the Cascades. It was the first family trip we have taken with all the children. It is so wonderful to have Braden doing well enough to travel some. Progress! We were able to stay with Darth's parents and have some family time with them. Darth's grandma came over too and rocked little Braden to sleep, cuddling him for over an hour. It was a sweet time for both of them.

Monday morning we packed up again and headed to Seattle for our appointments at Children's. The girls all went to the sibling playroom for crafts and Darth and I took Braden to the Cardiology appointments. He weighed in at 10 lbs. 14 oz. and measured 23 inches long--- still just a little guy, but definitely holding his own! Braden had an EKG and a pacer interrogation. Both showed good heart and pacer function. The pacemaker beats per minute setting was lowered at bit so that it simulates a more natural heart rhythm for periods of rest and sleep. Then the pacer was backed out to see what Braden's heart would do on its own. The tech lowered the unit's levels to see when the heart would kick in, if it all. Braden has a very low underlying rate, around 40 or 50. A low rate is better than no rate. We weren't discouraged by this appointment. God is still working in the life of our son. Our job is to trust Him. We just keep praying for a miracle.

Braden saw Dr. Chun to follow-up the pacer check. He said at least three times how good Braden looked. We think so too and how reassuring to hear it echoed by doctors! Dr. Chun was able to adjust the pacemaker settings to save the battery life, saying that sometimes these batteries can last up to 8 years. The pacers that adults have can last longer, more like 12. We appreciate anything that will keep our boy from more surgeries.

Because the appointments at Children's are for kids, the schedule doesn't stay on time. We had quite a wait for our doctor, so at one point, Darth and I decided to have me take Kara, Megan, and Rachel to lunch in the cafeteria while he stayed with Braden in the room. (Six people in a tiny exam room doesn't work. There is only one spinning wheeled doctor's stool and that is the room's highlight for elementary aged children! Plus, Braden was tired of waiting so he had to be bounced and paced back and forth and the adult doing the bouncing kept running into the stool rider . . . ) So we headed to the elevator to go have yummy cafeteria food---for the girls. (I was grateful for meals while Braden was hospitalized but seriously, I NEVER want to have to eat another meal there if I can help it.) Anyway, we were just about to go in to the cafeteria and we bumped in to a mom we met back when Braden was first born and hospitalized, in November. Her daughter frequents Children's with a serious medical condition and was there again for another surgery. My girls befriended and played with this little girl at the Ronald McDonald House. Every night they pray for her and ask Jesus to heal her, to help her family know He is with them. It is very precious and we have a special spot in our heart for this little girl, her mom, and family. Jesus amazes me at His timing, to have us both at THAT elevator at that exact moment for a few minutes of encouragement. Once again we see the way God works everything for good. Not everything IS good, but He takes the junk of life and shines bright spots into dark days. We continue to pray for this family. They need a miracle for their sweet girl.

Our mini-getaway continued as we left Seattle and headed north to my parents beautiful new home. I think we broke it in! It was a fun time of laughter, too much tempting food, and lots of family. Braden did great at night (Whew! Especially considering all the coffee and chocolate I had!) and loved all the attention from grandparents, aunties and uncles. We (four of the five siblings) even surprised my parents with a mini-celebration for their 40th wedding anniversary.

Friday, March 27, 2009

Mini-March Madness

Well, we have our own March madness going on in the Creek household----busy, busy, BUSY! But in a good way! The girls are enjoying the nice weather, lots of school activities, play dates, and now SPRING BREAK! (We are all ready for a week of being together and not playing beat the clock. ) Darth has been introducing Braden to the wonders of college basketball for some father-son bonding. Don't worry, we aren't turning him into a TV baby! His time is monitored!

Braden is just doing fantastic. He has gotten so busy with his arms and legs, making diaper changing time quite the event, like trying to capture and contain a hurricane. Today he had an appointment with an occupational therapist (OT) and a speech therapist (SP) to evaluate him based on age-appropriate development. Overall the results were good. He does qualify however for the intervention, so we will be having a monthly visit from the OT to help Braden with his fine and gross motor skills. The OT was pleased with his neck control when he was in a supported sitting position. She wants us to help him build endurance on his tummy, working on multiple short sessions during the day instead of just a few long ones. We were pleased with the assessment and are ready to implement the activities for Braden's floor time. The SP didn't have any concerns at this point. Braden was "talking" and responding to voices just fine, very much in line with another baby his age.

Cute discovery this week: Braden discovered Darth's goatee. He looks at Darth's face, grasps the chin hair with his hand, and gets an interesting look on his face, kind of like, mommy doesn't have this . . . (Thank goodness!) He is in a really fun discovery phase and we are really enjoying it! I understand why having kids later in life can be good. Not that we are old, but we are considerably more relaxed this time around, really taking the time to enjoy the "moments".

We are definitely looking forward to nearing the time when Braden can be "out" more. The cold and flu season is almost past and baby is scheduled for one more RSV shot. By Easter, we hope to be able to take him, cautiously, to church and other public places. He definitely won't be a nursery baby and I will likely have to guard him carefully; tough to do, he's just so incredibly cute.

The coming of spring is mirroring an emotional spring for us, a time of new life and hope. I was mentioning to several people this past week that the season of winter was an emotional winter too, cold and depressing, with a lot of dark days. The heaviness we have felt, starting with the news of Braden's heart defects in July, until just recently, is just starting to lift as Braden becomes more and more healthy. He feels more "normal", like we felt when raising the girls as babies. Not totally normal, obviously, but more so than days past. Less doctors' appointments, decreased medications, transitioning to regular formula, weight gain, physical development, it is all bringing the hope to our hearts and home that spring is bringing to the natural world. It is a beautiful thing. We have never been entirely without hope, there has always been a thread, a whisper of the Lord that we haven't been abandoned, that He has been there every moment. It's just that before, we were holding our breath; now we can take a deep breath, sigh, and relax a bit. It feels REALLY GOOD.

From our home to yours: HAPPY SPRING! Praying that this season of spring will bring new hope and life into whatever season you are experiencing now.

God bless you---Darth and Jenni

Wednesday, March 18, 2009

March Update

It's mid-March. Braden has finally passed the 10 lb. mark, most likely due to his rediscovered love of nursing. We are loving the baby chub we see him developing. He has recently discovered the "baby" in the mirror, smiling and talking to himself. Braden is continuing to show us his personality, laid back and easy to please, loving a good laugh and entertainment, a cuddle bug.

This past week, Braden has shown marked improvement in neck strength while doing tummy time. I have spoken with several people lately that weren't understanding Braden's challenges in that department. Basically, since Braden's pacemaker is placed in his abdomen, right under the skin, above his bellybutton, time spent on his belly is uncomfortable. But, that is the way to develop neck strength and the skills he will eventually need to start crawling some day. So. . . we persist with the dreaded tummy time. He doesn't detest it like he did so he must be getting used to the pressure on the pacer unit. We just received the equipment to call in Braden's pacemaker to check battery life and activity. It is so easy to feel normal with him these days. We are of course grateful for the technology, but receiving the equipment was a unwelcome reminder of his continued dependence on the pacer.

I met another mom this week who has a baby with physical challenges. It was a breath of fresh air to compare stories and to have that mutual understanding of a mother's heart. This family has walked a long road too and they continue to face difficult days. Without breaching their privacy, I'd like to ask people to please pray for this mom, her baby and family.

Braden was actually sick with a fever last Thursday and thankfully it seemed to be a 24 hour bug. Just as a precaution, he ended up on the yucky "pink stuff" (antibiotic) and it is really a fun job to try to get that dose in him. He has been taking meds orally for a long time so he is quite experienced with the funny tastes, BUT, he has put his little foot down on this one and has invented new ways to get it out as quick as we put it in. TEN DAYS of this. Yikes! At least we can give the girls their meds with marshmallows (yes, we really do that), but we're kind of stuck with him. Oh the fun!

Sunday, March 8, 2009

3 Month Pictures

Warning! Cute baby ahead! Proceed with caution!
Go to and select
"Braden" to view a super sweet slide show! Enjoy!

Friday, March 6, 2009

March News

We are into March already, enjoying the sunshine when it chooses to appear. Lucy (the beagle), Braden and I ventured out on a walk the other day. It is hard to simultaneously manage a leash and a stroller but it worked. Snow on the ground again this morning reminded us not to get too spring-feverish yet. Still it is very appealing to think about more outdoor time with baby soon.

Braden has his first cold, compliments of his sisters. It is amazing it has taken this long. The girls have struggled with cold symptoms since early January, off and on. He feels pretty well except for the stuffy nose. Poor little guy!

Today was Braden's March cardiology appointment and he had another echocardiogram. The heart looked good, still swollen. The doctors are always "watching" something but it wasn't anything that overly concerned us. Most things are presented with the knowledge that surgery can affect different areas of the heart just by the sheer fact that something unnatural has been done, it has been "messed with". The cardiologists are very zealous in their search for problems that might come up. Braden's was pronounced to be doing very well and doesn't have to be seen again for cardiology until June! The doctor also mentioned that he may be able to come off his heart meds at that time. That is encouraging news, giving meds to an infant has been very tedious. Braden has a pacer check at the end of this month, but that is a really short and sweet appointment, focusing on the function of the unit and any changes that need to be made to the settings.

Braden weighed 9 lbs. 10 oz. today, not the weight gain we would really like to see, but okay. He has the stuffy nose issue plus he has started to do a bit of nursing again which requires more energy. That means more calories burned and less calories going to plumping up the boy. We are still hoping that eventually he will be able to go back to nursing.

On Sunday Braden will be 4 months old. He has officially been home longer than he has been hospitalized! He is still uncomfortable on his tummy because of the pacemaker in his abdomen. We keep time on his stomach short. He has started grabbing hair and gets a great reaction from his sisters. Have you seen the hair on the girls? Braden is going to have a hay day! Braids and ponytails will have to be the sister style to save them from bald spots. He has also started to cackle when tickled. So cute!

Thank you for your continued prayers for Braden and our family. I know he has been so healthy and doing so well because of the Lord. Also, Darth and I are doing well and we thank Jesus for helping make a strong marriage stronger. So glad for the Love and Respect marriage conference we attended last spring. It was an investment that paid off in ways we never could have foreseen. Each day we are reminded that Jesus is our Rock in life and for the future. The news has been scary lately but no matter what happens, we know that God is still in control and that is where we place our confidence, not in people, or money, or government, or the medical community, in GOD. The peace from that knowledge is AMAZING.

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Philippians 4:6-7, NLT

Friday, February 27, 2009

Update Tidbits

Braden is definitely teething, poor guy. He is just chewing away at those cute little fingers and sticks them in too far, more often than not. We haven't seen him get overly fussy, though. He is continuing with tummy time and the physical progress is coming slowly. Braden cries half the time, but then other times he will be really relaxed and fall asleep. He still has far to go with strengthening his neck muscles to lift his head. He will get there!

Braden's weight was 9 lbs. 7 oz. at yesterday's appointment. While he was down to his diaper, I looked really hard and I think I may have seen a fat roll. Hurray!

I found a photographer that will come to my house for baby pictures every several months. Interestingly, the photographer also spent time at Children's with her own heart baby. Braden had several pictures that will likely show the chest scars. Those scars aren't pretty, but at the same time they are beautiful. It is part of our Braden's story and how far he's come. We had a lot to talk about during the session and it was good to talk with someone who'd been there. Can't wait to get those pictures back!


Thursday, February 19, 2009


Braden was weighed again today and was 9 lbs. 1 oz. This weight gain thing is extremely exciting for us! Every day, seeing him thriving, doing so well, it is so gratifying. We find that as we relax just a little bit more the further we get from his surgery and hospitalization that we are spending significant time reflecting on the whole experience. It has really been more than our minds could process at the time. We have been able to consider our faith in Jesus, having been tested in such a gut-wrenching way and can testify that He really is faithful, even when we don't understand what we go through or why.

Baby Braden continues to lead a rather quiet life. He doesn't go much of anywhere and the few times he has gone out, I have been so stressed out by complete strangers or kids coming up to touch him I can hardly imagine going places where I know people. It is difficult to have such an adorable little pumpkin and not be able to show him off, but why do people insist on touching babies' faces and hands? Everything goes in the mouth and that's how germs are spread. It is awkward to have to guard him so closely, so we just stay home! I keep telling myself that this is just a season and that he depends on us to protect him while his immune system builds up. I remember in my research hearing about a similar baby whose mother remarked "ours was not a pass around baby". That is our Braden too. We are trying to find that balance between not being overly fearful and just using the good brains God gave us.

Our little guy has been learning some good lessons lately about the joys of having three big sisters. First, if you even make a peep, or grimace for that matter, there is always a sister to shove a pacifier in your mouth. It is actually good entertainment to see how many times it can be spit out (because you don't really want it) and have it promply stuffed in again. Also, sisters make you sparkle. Since everything the girls own has glitter on it, baby Braden sparkles with glitter dust constantly . . . on his head, cheek, nose. He'll love that when he's older. Just wait till they talk him into mascara on his beautiful long eye lashes! Last, sisters are very entertaining. Rachel does a mean version of Mana-mana (How DO you spell that?) from the first season of the Muppet Show. She sings it over and over for Braden (dances too) as he swings. All three hover and sing and talk in little squeaky voices to make baby smile. He makes them work for it because it really is entertaining and what else does he have to do?

Braden celebrated his first Valentines day by wearing a big heart bib declaring it. He missed out on the heart shaped pizzas and yummy hot chocolate fudge cake but I think he enjoyed himself. We are all sincerely enjoying all the family time this slow season is providing us with. Life is good and we keep looking for opportunities to celebrate each day the Lord gives us.


Thursday, February 12, 2009

Braden's Dedication

On Sunday, February 8, 2009, we had the joy of dedicating Braden, now 3 months old, to the Lord in the presence of our family and congregation. It took some work to get our crew over to the church for the service. Darth goes over early for worship team practice, so it was a one to four ratio, parent to children. I have to say, that morning was a bit hectic, trying to get myself and FOUR kids (I have to keep reminding myself I am the mother of 4!) ready and out the door, looking presentable, at the same time. Tricky business. The girls are at this interesting point in life, old enough to do most things for themselves, but young enough to be easily distracted by almost anything, the dog, the TV, the ... (you name it). I'm pretty sure I raised my voice a few times that morning! My kids still love me, but we will have to keep working on the responsibility-follow-through thing.

It was a day of celebration for us. Both our families came over to be a part of the day, filling two entire rows in the sanctuary. They needed to be there. Every family member has walked this road right along with us from the beginning, when we discovered we were having a baby with heart defects. From July to the present, our parents and siblings, have been so encouraging, praying, taking our girls when we needed them to, just being there for us. The service was a special time to remember how far God has brought Braden. Our family members have seen him at his worst, in ICU with the open chest and lines everywhere, to today, where he looks absolutely fabulous and amazingly adorable. It was an joyous time of celebration and expressing gratitude to Jesus for all He has done in Braden's life, as well as in our family.

Pastor Jerry brought Darth, myself, Kara, Megan, Rachel, and of course Braden, onto the platform. He spoke for several minutes, on the miracle that Braden is, where he has been, and where he is now. There was a beautiful arrangement of yellow roses for me. I appreciated the gift as well as the verbal blessing to be where I am needed most, with Braden. I haven't been to church since November and that has felt really strange. However, I know that this season with Braden is extremely important.

After sharing some of the Bible passages that have been so close to our hearts, like Jeremiah 29:11, Pastor Jerry challenged us to raise Braden for the Lord. Darth and I affirmed our desire to train Braden in the knowledge of God and His Word. Then others on the pastoral staff came on stage to join us for prayer. The prayer time was wonderful. Braden started crying, because unfortunately he didn't get to finish his bottle and I didn't think to bring a pacifier on stage. I whispered to Kara to go find one in my purse and she saved the day! The crying, magnified by the microphones on the platform, was another display of Braden's health. I don't think anyone minded the noise. The pacifier worked its magic and then we could once again hear Pastor's prayer. Thank you Lord for our precious baby boy and wonderful girls. We ARE blessed.

A brief health update: Braden now has an homecare nurse that will be coming by once a week for tracking his growth. Darth and I are very glad to not have to take baby weekly into the pediatrician's office. This is a bad season for frequenting where the germs are! Braden weighed 8 lbs 11 oz on Wednesday. He is feeling more solid when we hold him and his little cheeks are getting fuller. So cute! He has also been doing little bits of tummy time. The incision and pacer have made this a long time in coming so we are starting slowly.


Friday, February 6, 2009

February Cardiology Visit

Braden saw the cardiologist at the outreach clinic today. It is a wonderful thing to have access to great medical care. The clinic is held 5 minutes from home. We appreciate not having to drive to Seattle for every appointment.

The visit went really well. Braden weighed 8 lbs. 4 oz., up from yesterday (hey, ounces matter!). He had an echo, done by the same tech who did the pre-surgery echo. Braden was very cooperative, drinking his bottle and watching Baby Mozart on the TV. The doctor was pleased with the heart function. Always love those good reports. Braden's diaphragm is still enlarged and that issue links to the initial surgery. It may take a while for that to correct, for the diaphragm to return to normal position and function. We may have to wait several months for the diaphragm to heal and the left lung to be able to fully expand again. The cardiologist wasn't too concerned since Braden is looking good and gaining weight. If he was "limping along" it would be another story, but thankfully that doesn't describe our boy!!! Also, we have dropped another medication, down to three now. We came home from Children's with five.

Please pray for the diaphragm to heal, for health for our family (the girls keep picking up sniffles and coughs from school), and for weight gain. Thank you!

-Darth & Jenni

February Update

Braden has finally passed 8 pounds! Today he was up to 8 lbs. 3 oz., not quite on the growth curve yet, but getting closer. He has started laughing too. It brings tears to our eyes, it is so adorable. What a happy baby he is.

It has been a month since we came home from Children's. We are enjoying being able to look back and remember how far Braden and our family has come in a month. It is still hard to process all we have gone through with him. God has been gracious to our little guy. Children are a blessing and we rely of the Lord every day to raise these little people He has entrusted to our care.

Thursday, January 29, 2009

New pictures

Just a few photos of our little man!

Wednesday, January 28, 2009

More Progress

On Monday, Braden saw his pediatrician and was given the green light to go back to straight breast milk. His chest x-ray showed no signs that the chylus effusion was still an issue and that means his body is tolerating fats again. Hopefully Braden will start gaining weight more rapidly now. His Monday weight was 7 lbs. 10.5 oz. We are celebrating every bit of progress. At this point we are still enriching his feeds with formula for a higher calorie intake but are really optimistic that he will be nursing again soon. The bottle has been great, though, for involving the whole family in caring for baby. The girls have all taken turns giving Braden his bottle and they think that is just the best thing ever! They giggle and coo and just admire him by turn. He of course loves the attention and their perky little voices. And, Darth gets to take his turn at night feedings! Hurray! I still get up of course but get back to bed sooner than I would otherwise and that is wonderful. Sleep is such a fond distant memory. I'm sure I'll catch up some day . . .

Braden is getting a really strong neck and is able to be held up to our shoulder for burping now. The incisions and pacer have made this slow in coming. Soon he will be able to start tummy time. Right now his loves are eating, sucking on his pacifier, his swing, and being entertained. He doesn't prefer baths (hates them would not be too strong a description) and has extreme reactions to being weighed at the doctor's office. But other than that he seems to be a super mellow little guy who has a big tolerance level and enjoys the simple things in life. Braden has really expressive eyes and we enjoy seeing how much he can "say" with just those big baby blues. He often lifts his little eye brows too, all the while just sucking away on his paci. So cute! Pictures are coming we promise.

Today I found myself finishing up dishes and listening to Braden fuss and was surprised to start feeling really grateful for a crying baby! It was so hard when he was in the Cardiac ICU to see him show signs of pain with his eyes and to not be able to cry because of the breathing tube. Then after it came out it took a while for his voice to come back and for him to use it. We continue to be so grateful to Jesus for how far He has brought Braden. He is our little miracle.

-Jenni & Darth

Friday, January 23, 2009

Pacer Check

Yesterday, Darth, Braden, and I went to Seattle Children's for Braden's pacemaker check. The mountain passes were great, so thankful for that.

The check went well. The clinicians that work in the electrocardiology area are so helpful and nice to work with. It was a pretty short and sweet appointment. Braden had 4 different conductor pads attached to his chest, with hook-ups to read the heart activity, and then the actual magnet that "talks" to the pacer was placed on his abdomen. The tech viewed the heart activity on the monitor and said everything looked good, the pacer was doing well and Braden's heart was responding appropriately. Because he is still so little and the pacer is relatively newly placed there will be some adjustments that will take place several months down the road after the heart recovers more from the initial surgery.

Lucky Braden also got to have some lab work. The lab tech at Children's are so good at working with little veins, we would just as soon have blood draws there when it is convenient. We celebrated our healthy little guy by dining at Teriyaki Madness in Kirkland for a late lunch. Their teriyaki chicken and rice is to die for! It took us back to our college days when we were poor and life was amazingly more simple.

Which reminds me: We are so grateful for medical insurance! The EOB's are coming in from all our medical fun and oh my! Yesterday we had nineteen of those in the mail. Our "Braden" file gets its own file box.

As we continue down this road called "life", we are so thankful for Braden and our three daughters. With every turn we stick together and support one another along the way. It's reassuring to know that Jesus holds the steering wheel and promises to never leave us alone on our journey! Life is truly precious!

- Jenni & Darth

Wednesday, January 21, 2009

Tubeless in Wenatchee

This week, Braden has been doing so great with his bottle feeds that we planned to ask our pediatrician to let us progress a bit more on the feeding front. The morning of our appointment Braden decided to remove his own feeding tube (again!) and that kind of cinched the deal. I (Jenni) wasn't dying to replace the tube and since our doctor is so great at working with us and our comfort level with Braden's progress, he agreed to let Braden have had only bottle feedings (no continuous feed tube feedings). Braden has been doing this for two days. It is incredible to see our little man with no "lines" for the first time in over 2 months! He has been doing great with the bottle and has really gotten the hang of it again. We are still wanting to see more weight gain but that seems to be slow in coming. Still, Braden's breathing is looking good (no laboring), his food is staying down, and he is in all visible respects doing extremely well.

We will write again after our pacemaker clinic at Children's later this week. Keep praying for that pacemaker miracle. Thanks!

-Jenni & Darth

Saturday, January 17, 2009

Braden at Home

It has been almost two weeks since Braden was released from the hospital. The time has been spent getting back into a routine of sorts while trying to fit in lots of doctors appointments, phone calls and meetings. Everyone, it seems, still wants a piece of our little man.

I have become Braden's nurse; It really is a full time job. He has a round the clock meds schedule and a unique feeding plan, that just changed this past week. Braden had been on continuous feeds through his NG (feeding tube) but just started having bolus feeds during the day. I really have to work with him to take formula from a bottle. He has had to relearn that skill, sucking and swallowing without gagging. Plus he is on a funky low fatty acid formula that can't possibly taste good! Braden started on Tuesday taking in only about 10-15 ml of liquid by mouth and then taking the rest through the tube to finish off each feeding. He progressed to about half an ounce and then this evening he actually drank the entire bottle. We were ectastic!!! The best part is he is finally getting into a more normal hunger/eating/ sleeping pattern. We rejoice with every bit of progress Braden makes. And I have to say he has the best lopsided baby smiles!

Next week Braden heads to Seattle for a pacemaker clinic. At a cardiology appointment last week the doctor reported (after looking at some test results) that Braden's heart is still enlarged due to swelling. He has had a fair amount of trauma to his little heart in such a short amount of time. We are encouraged by that news and choose to believe that the heart block condition can still change as that swelling goes down. No one is saying that to us medically because unfortunately there is a tendency to be brutally realistic. Yet, the need for a pacemaker can change and that is how we are praying for Braden, a temporary condition. We are praying for safe travels and a good report for the upcoming pacer check.

On a lighter note, our last family member came home today and now we are really all back together. Lucy, our 2 year old beagle, has just returned from my sister and brother-in-law's house, where she has been since right before Braden's birth. It was very exciting to have her back with us. Lucy was not overly impressed with the baby. She gave him the beagle sniff test and I guess he passed. Now we really have a full house with 4 kids, 2 cats , and 1 dog. HELP!! Really though, we love all the activity and controlled chaos. We are blessed.


Thursday, January 8, 2009

Home sweet home

For the first time in a month, we are all under one roof! Thankfully I was able to pick up Jenni and Braden on Tuesday and bring them back to Wenatchee. The weather was terrible, but we were on a mission.

Even though we are home, Braden still has some healing to do. He requires a feeding tube for nutrition and some medications are ongoing, but we hope he can be weaned as soon as possible. Braden is undergoing some physical therapy so that when he's off "the tube" he can eat by mouth again. Each of these steps are a process, and we look forward to his complete healing.

Thanks for checking in on Braden and our family. Once we're settled in a bit more, I will make it a priority to post some new pictures.


Tuesday, January 6, 2009

One step closer to home

After twenty five days and three surgical procedures, we are happy to announce that Braden was officially discharged from Seattle Children's Hospital today! This has been a very long road, but now we are one step closer to home.

On Saturday I was able to bring our daughters back to Wenatchee. We felt it was important for them to be able to start school with their classmates on Monday. So now, if the mountain passes allow, I hope to return to Seattle to pick up Jenni and Braden on Tuesday.

Again, we thank you for your prayers. They have carried us to this point and we are so grateful to everyone!


Sunday, January 4, 2009

Happy New Year!

Well, it is 2009 and yes, we are still at Children's. But good news, it looks like Braden will be discharged tomorrow. I am hopeful and optimistic because he has done so well over the past several days. Today the nurse even took him off the monitors and he is only hooked up to a pump for his formula. He is on a continuous feed still, taking a special formula, until his lymph node issue (chylus effusion) is resolved. That means he will come home with a feeding tube. Which, by the way, I would like to say that today I placed his feeding tube! I am very proud of myself. It was a lesson I didn't want, but had to have for discharge. It is necessary to know how to do this just in case he pulls it out, which Braden has down to an art! That is why he gets to wear socks on his hands all the time now. Anyway I really dreaded having to do it but it wasn't as bad as I had anticipated. Braden didn't appreciate it however.

We are getting so close to all being together again under one roof that I am practically hyperventilating with anticipation. I am actually looking forward to doing wash in my own laundry room and cooking again! We will be sure to let you know when we are actually discharged. Braden still has challenges ahead of him, but we are pleased to continue his care from the comfort of home. He is getting stronger every day and we are confident that the Lord is continuing to heal him.