Braden Robert Creek

September 2010 Update

2010-09-05T22:19:00.000-07:00

Just in case anyone still checks Braden's blog, we thought we really should update it! Braden is almost 22 months old. He is the happiest, busiest little guy ever. He runs everywhere and climbs, jumps and dances. What a miracle. He keeps us busy trying to out-think him. Thank goodness for nap time.

Braden has finally started becoming more verbal. He "talked" before, but gibberish, with lots of facial expression and gesturing. Now he is saying numerous recognizable words and parroting everything his sisters tell him to repeat. They like to follow him around with pencil and paper and jot down his pronunciations. Also new, Braden has started singing. So sweet! His favorite songs are "Twinkle, Twinkle Little Star" and "Winnie the Pooh".

Next week is Braden's every other month call-in pacemaker check. It is a reminder of his dependence on that unit, but we really take it in stride these days. Originally, we were told to be cautious of the unit placed in his abdomen, and we are, but he is a BOY, rough and tumble, active every waking moment. All he knows is the pacemaker in his tummy so for him it is normal. He flops on his stomach, somersaults, slides headfirst, no problem! Still, we are thankful he has had no major falls. At this point our concern has been the antibiotic he has to take for cuts in his mouth, due to the residual shunting from the VSD repair. Usually Braden falls and cuts his mouth when we are away from home or in the evening after hours, but thankfully we have refills at the pharmacy and it hasn't been a huge problem. It ends up just being an inconvenience.

We continue to delight in all that Braden IS that he "wasn't" supposed to be. According to the experts, he was a "decision to make" at the first medical appointments, once the heart defect was detected; he was high risk to be Downs or Trisome 13, and delayed physically and verbally. God had different plans for him and we would have missed out on the biggest joy in our lives if we had followed any other plan. We love our Braden boy!

Happy 2010!

2010-01-25T22:00:00.000-08:00

We are in the new year and life is good! Braden is doing sooooo well! Our Thanksgiving at home and Christmas with family were both wonderful times of celebration and times of thanking the Lord for his faithfulness over the past year. And now, here we are, in the new year.

Life is full speed with four kids. I half jokingly mentioned to a friend that I am still getting used to being mommy to four, but seriously, the first year with Braden was so intense with surgeries, hospitalization, recovery, and doctor visits. Nothing felt "normal". Now we are busy again with school and church activites. Braden even gets to come to Sunday service now, but he still gets his hands washed frequently to avoid illness. That being said, he has been extremely healthy.

Braden is walking (running) now and into EVERYTHING. He's making mommy a little nuts! He really misses his sisters during the school day and that is actually when he gets into things the most. He has discovered the kitties and dog and they have learned to avoid him. We are working on "nice hands" with the pets and the patting becomes slightly less painful looking. Braden has also learned to straight-arm his sisters when he has had enough mothering and kisses. Most of the time he is very affectionate.

Check out our most recent pictures at www.mkcphotography.phanfare.com. Love that boy! We are blessed with wonderful kids. God is good.

-Darth & Jenni

6 Month Cardiology Check

2009-11-13T15:35:00.000-08:00

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.

Happy 1st Birthday!

2009-11-09T22:19:00.000-08:00

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!

Pacemaker Check

2009-10-05T21:48:00.000-07:00

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

Fall News

2009-10-02T21:58:00.000-07:00

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!

SUMMER RECAP

2009-09-05T10:49:00.000-07:00

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

Summertime!

2009-07-02T20:08:00.000-07:00

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, http://www.mkcphotography.phanfare.com/. 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.

Warmly,
Jenni and family

More Good News

2009-05-26T19:24:00.000-07:00

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.

Celebration Time, Come On!

2009-05-15T22:51:00.000-07:00

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. . . !

Six Month Check-up

2009-05-12T09:28:00.000-07:00

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!

May Update

2009-05-05T20:53:00.000-07:00

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!

-Jenni

New Accomplishments

2009-04-28T00:00:00.000-07:00

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!"

Five Months Old

2009-04-14T23:20:00.000-07:00

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.
-Jenni

Too Much of a Good Thing!

2009-04-03T15:12:00.000-07:00

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!

Pacemaker Check-up

2009-04-02T20:56:00.000-07:00

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.

Mini-March Madness

2009-03-27T11:46:00.000-07:00

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

March Update

2009-03-18T00:16:00.000-07:00

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!

3 Month Pictures

2009-03-08T20:19:00.000-07:00

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

March News

2009-03-06T19:16:00.000-08:00

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

Update Tidbits

2009-02-27T07:49:00.000-08:00

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!

-Jenni

Reflections

2009-02-19T23:06:00.000-08:00

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.

-Jenni

Braden's Dedication

2009-02-12T08:49:00.000-08:00

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.

-Jenni

February Cardiology Visit

2009-02-06T18:05:00.000-08:00

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

2009-02-06T00:15:00.000-08:00

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.

New pictures

2009-01-29T14:55:00.000-08:00

Just a few photos of our little man!

More Progress

2009-01-28T22:48:00.000-08:00

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

Pacer Check

2009-01-23T09:14:00.000-08:00

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

Tubeless in Wenatchee

2009-01-21T00:02:00.000-08:00

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

Braden at Home

2009-01-17T21:52:00.000-08:00

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.

-Jenni

Home sweet home

2009-01-08T13:37:00.000-08:00

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.

Darth

One step closer to home

2009-01-06T00:15:00.000-08:00

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!

Darth

Happy New Year!

2009-01-04T13:08:00.001-08:00

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.

-Jenni

December 31 Update

2008-12-31T09:03:00.000-08:00

This will be our last post in 2008. We really thought we would be home by now, but it looks like we will be going home in 2009, hopefully soon. We are still waiting for several issues to be resolved before Braden will be discharged from Children's. He moved to the floor on Saturday, December 27. Being moved out of the Cardiac ICU felt like real progress. The milestones Braden needs to reach include being weaned off pain meds, keeping food down, training for Darth and I on his pacemaker, and having acceptable chest x-rays. We take turns staying with him at the hospital overnight, while the other parent stays with our girls. It has been a pretty good arrangement. The one at the hospital never gets much sleep so alternating helps us get a decent night's sleep at least every other night! It is taking a long time to write this because I was the hospital parent---not much sleep to report. Braden was super cute this morning. I was able to carry him to his chest x-ray. He was very bright-eyed, glad to see something different than his hospital room I think. He is looking GREAT and his stats looks wonderful too. Please pray the needed criteria will be met soon so we can return home.

-Darth & Jenni

Pictures of Braden's journey

2008-12-27T12:00:00.000-08:00

Left to right, top to bottom:
1. Getting ready to leave for Seattle
2. "I surrender!" Sleeping with mitts on to keep feeding tube in
3. Daddy, Braden and the Mariner Moose
4. Surgery Day
5. Back in the room following open heart surgery
6. After chest closure
7. Still on the respirator
8. Santa Braden
9. "Me? Cute?!" Finally a glimpse of the real Braden
10. "Merry Christmas Mommy!" First time snuggling since surgery
11. Holiday Greetings from the Creeks
12. Big boy bed and enjoying his Christmas present, a Winnie the Pooh mobile

Friday post-op

2008-12-26T23:58:00.000-08:00

A quick update from today's surgery:

Braden was in the operating room for just under two hours. (This was his third trip to the O.R. in two weeks!)
His temporary pacemaker and wires were disconnected, being replaced by his "permanent" pacer and single lead connected to his right ventricle.
After surgery, Dr. Permut told Jenni and I that he was pleased with how the procedure went.
Now all Braden needs is time to heal. We pray that his body will respond well, with no complications.
As he progresses, the doctors will determine when he can leave CICU and move to the floor. One step closer to home...

Thank you for your continued prayers,

Darth

We Are Blessed

2008-12-26T16:19:00.000-08:00

Happy Day-After-Christmas! Here's Braden's update:

Braden has just gone into surgery to have a permanent pacemaker installed. Darth and I really have been praying for a miracle in this area, hoping to avoid yet another procedure. Things have not gone as we would have prefered. However, if we have been reminded of anything over the past several days, it is that God is God and we are not! Sometimes we seem to try to take on the advisory committee kind of approach to our requests of the Lord. This issue in particular has been a real painful one to release to His will. We know Jesus heals and that He responds to our faith and answers prayer. When He doesn't answer in the way we want Him to, it challenges our faith and sometimes even shakes it. We have had a rough couple of days, praying, crying, pleading, and even being angry, questioning why our infant son has to go through so much. We have been really believing for a miracle concerning the heart block. Many of you have been right there with us, helping us through these intense days. We could not have come out with the peace we are currently experiencing without you helping to carry us through it. We actually hit a point of exhaustion trying to negotiate with God and finally had to say, okay, we give up, this is your thing not ours and we trust and praise you regardless of the situation.

Earlier today, when we got to Braden's room, the team of doctors was there and were discussing some activity the ventricle was conducting. It was not consistent, but it was there. We were so excited to hear even that. There will just be a ventricular lead placed with today's surgery and it is needed at this point, but later on, if full function returns, it will just be back-up. Every day we wake up and say, Lord this would be a great day for a miracle. So, today's news was so encouraging, especially with the pacemaker surgery being the same day. Braden is just plain a miracle anyway. Today in our consult with the surgeon, Dr. Permut, he was saying that Braden's VSD is the largest he or Dr. Cohen have ever seen, in their combined years of experience. The fact that it was able to be closed at all is amazing. Yesterday Dr. Cohen called it monstrous.

On another note, we want to extend our gratitude to several special groups of people. Some are even individuals we have never met, but who have been such a blessing. First, thank you to the wonderful group of families (Dennys, Guntermans, Wards, Guys, Walkers, Tris, Chapmans, Evans, & Giaudrones) that sent us a gift basket, gift cards, and presents. You have never even met us and yet you were so loving and generous in a really practical way. THANK YOU!

Next, we want to thank another amazing group of people, our "heart" family. We have been so encouraged by the input of other families that have been there and done that with congenital heart defects and surgeries. We have been through an extreme crash course in our education and it has been painful. Your support has helped carry us through the ups and downs of these difficult days. Though we may not have contacted you directly, we have read your input and have benefited from your encouragement. Thank you, thank you, thank you!

Lastly, to those of you who have prayed us through the last week, when we were feeling so low and discouraged, thank you for listening to the Lord and for praying at odd hours of night and day. We really needed that support and it made all the difference for us in facing today and the acceptance of God's will over our's.

We will update you after Braden's surgery is completed. We are praying for no infection to set in from today's incision, for good lung function following another brief time on the ventilator, and great recovery over all. We just really want to go HOME!!!!

We are blessed!
-Darth & Jenni

Merry Christmas!

2008-12-25T20:30:00.000-08:00

Merry Christmas from the Creeks! There is no doubt that this will be a Christmas our family will never forget. But even with the circumstances as they are, we are able to give thanks to God for the gift of His Son, Jesus. He is the reason we have hope and peace.

Braden is doing well. He enjoyed his first Christmas by opening gifts (with a little help from his three sisters), listening to carols, napping and enjoying a feast of fat free nutrition through a feeding tube! Ah, the life of a six week old.

Tomorrow the doctors are planing to put in his pacemaker. Even if some of his natural rhythms were to return, they still want to implant a pacer, just to be on the safe side. Jenni and I are at peace knowing that God is in control. Of course we don't want to have another operation. But, Dr. Cohen said that if down the road, Braden's heart functions improve and the pacer wasn't needed, they could remove it. So Jenni and I are at the point of waiting on God and releasing it all into His hands.

Right now we would love to think that we could be home sometime next week, but one thing we've learned through this whole process is that you can't schedule anything. That's just the way it is in the world of medicine. Jenni and I just want to bring Braden home healthy and whole, no matter how long it takes!

Thanks again for your support and prayers. We will post an update tomorrow night to let everyone know if the operation was needed and how Braden is doing.

Blessings,

Darth & Jenni

Two days til Christmas

2008-12-23T10:29:00.000-08:00

Just a quick post:

Braden is resting. All of his chest tubes are now gone. Only a picc line and his pacing wires are left. The doctors have given til Friday for Braden's heart rhythms to return. If they don't come back the surgeons will put in a permanent pacemaker. Braden's heart rhythms did work before the surgery, but with this type of operation and the size of the VSD, heart-block can be a side effect.

All we can do is pray. Thank you for praying for us and with us.

Darth

Still believing

2008-12-20T19:26:00.000-08:00

Greetings from Seattle Children's Hospital, where it's beginning to look a lot like Christmas. The snow is falling and we are enjoying the view from Braden's room. It's fun to think about him all bundled up, out playing in the backyard with his big sisters next year. But for now he's on a pretty strict routine...resting, some awake time, then some sleep, a diaper change here and there, then more sleep, some awake time, and more sleep. He's taking it all in stride. Overall, Braden is pretty comfy and cozy.

Braden is having a good day. Here is the latest:

His pacemaker is still needed as of right now, but we are believing for a miracle.
Tomorrow the doctors are hoping to remove the breathing tube!
Braden's lymph nodes are still in the process of healing; we pray that they will do so quickly.
Last night they were able to remove one large and two small tubes from his chest. (There is only one drain tube left, plus the pacemaker wires.)

Thank you to everyone who has taken the time to leave comments on the blog or send us emails. Jenni and I have been so encouraged! In fact, some have sent written prayers and Bible verses for Braden.

This gave us an idea; we would like to print these prayers and Scriptures to hang them in Braden's room. If you have a specific prayer or Bible verse that you would like to share, please email or post it and we will add them to the ones we have already had on our hearts to pray over our son. Thank you!

Darth & Jenni

Six days after surgery

2008-12-18T23:26:00.000-08:00

As our family continues on our journey we realize that there will be time of smooth sailing and times of turbulence. Well, today was a bumpy ride. There was some good news to start the day off with, then bumps came one after another. As Jenni and I strive to walk by faith and not by sight, we know that fear will attempt to overcome our faith. So today we battled and can say that God is faithful to complete the work He started in us and in our family.

The good report is that when the doctors turned down the pacemaker, Braden's heart paced on it's own at a better rate than it did on Wednesday. So this is good...but the doctor also reminded us he felt that there was a possibility (his opinion) that a permanent pacemaker may be needed. Thanks a lot Dr. "glass half empty"! Jenni and I are trying to rely on God's prognosis and allow Him to do what He wants, in His timing. (At the time though, this was like a punch in the gut!)

The other bump of the day happened as Braden was receiving milk through a feeding tube. The nurse noticed that there was a cloudy substance coming from one of Braden's chest tubes. After consulting with the doctors they concluded that it was a condition with Braden's lymph nodes. I can't remember the exact medical term, but basically the nodes are very fragile and through the process of surgery they can become damaged easily. As the milk was introduced to Braden's stomach these nodes were unable to process the fat content. So the fat was released to the body and they pooled in an area around the lungs. With Braden's tube in place, the fluid then was able to drain out. This isn't an uncommon side effect with this type of surgery. But it must be dealt with. So, for the time being, no more milk for Braden, he is now receiving another type of nutrition through his feeding tube, something his lymph nodes can handle. These nodes must have time to heal, and if they don't heal on their own, surgery can be needed.

So our request to you, our faithful friends and prayer partners:

Please pray that Braden's heart will be strong and pump with the right timing and volume so that a permanent pacemaker won't be needed. (And maybe Dr. "glass half empty" will have a change of perspective.)
Please pray that Braden's lymph nodes will heal and no surgery needed. And that he will be able to have milk again ASAP.

We love and appreciate you all! Thank you for continuing to stand in faith with us for our son Braden!

Darth & Jenni

Tuesday Update

2008-12-16T23:01:00.000-08:00

This is day four post-op. Things are progressing well but slowly from our perspective. I think it feels that way because we are so anxious to be done with all this.

Braden ran a temp last night so the doctor had the nurses draw blood to run cultures on. Infection can sometimes be an issue with chest closure (surgery in general!); it is not unusual. His temp was down later in the morning so it (infection) appears to not be the case. The cultures are monitored for 3 days so please pray that nothing "grows".

The bandages were off the chest closure. We were able to get a good look at his scar. Impressive. It will look better with time but is really intimidating now. Braden was awake more today than we have seen since surgery. He is still on lots of pain meds so his awareness of us is hazy. It was still so great to see those beautiful blue eyes!

His breathing and oxygen saturation levels are still being closely monitored. As soon as more progess is made to breathe independently we will see the breathing tube disappear. We are continuing to pray that the lungs will be clear and function efficiently and independently. There was progress in this area today.

Braden has started being given some breastmilk, very small amounts, but it is a step in the right direction. Please continue to pray for the heart to kick in and function properly without the pacemaker. Surgery was just days ago and the heart has been tramatized; we are encouraged that this is likely a temporary need.

As this time draws on we are trying to take care of ourselves, our emotions are all over the place with each report and we are physically exhausted. We have to keep our focus on the Lord and not react to every little thing. The medical personnel report the facts and our job is to take it to God. Darth and I spend a lot of time over Braden's bed just praying. We feel so helpless, yet are grateful for the peace that comes when we release our concerns to Him.

We have met so many families with very sick children. Two kids to pray for are Meka (heart surgery tomorrow: infant baby girl) and Tyler (5 year old with leukemia) and their families.

More updates soon.

-Darth and Jenni

Monday night update

2008-12-15T22:22:00.000-08:00

Thank you for taking the time to visit our blog to check in on Braden. Jenni and I appreciate every one's interest and support. Here is the latest from Seattle Children's Hospital:

The good news is Braden has been fairly stable since his surgery last Friday. We have a wonderful team of Doctors and nurses working around the clock, giving him the best of care (We love Children's!!!). His swelling has come down a bit, and last night they began adding some nutrition to his IV drip. Braden is still on a pacemaker right now, but we are praying that it will be just a temporary thing. Jenni and I noticed that his coloring has started to improve. We were blessed to have him open his eyes a little bit last night, not for his sake (because he won't remember a thing) but for our sake. After everything we've experienced, just to have him open his eyes means the world to us! He has been resting comfortably and we are spending our time holding his hand and giving lots of kisses on his head. We are grateful to God for the progress that is being made.

There are a couple of things that I didn't mention in our last post-surgery update. The first is that when Braden was transitioning from the heart-lung machine during surgery, his heart stopped. Dr. Cohen had to perform manual compressions to get Braden's heart pumping again. When Jenni and I found this out it shook us up a little, but we again realized how much every one's prayers covered our son. God bless you for praying!!! Another point that I didn't mention in our last update is that Braden's chest was left open after surgery. This is a common practice for pediatric heart surgery. Whenever someone is put on the heart-lung machine the body reacts by retaining fluid, and swelling occurs. In our post-op consultation with Dr. Cohen, he informed us that Braden's chest was left open and then, after the swelling subsided, a second surgery would take place to close it. It's almost unbelievable, but amazingly true, Jenni and I could actually see Braden's heart through a thin bandage layer. This wasn't an experience I was looking forward to, but it was pretty amazing to say the least. Well, we are happy to report that the second operation took place today and the surgical team were able to close Braden's chest. It took a bit longer than what we thought it would, but it was so good to see him with a new bandage and to know that he has passed another hurdle. Now we are looking forward to when the ventilator can be removed and his medications scaled back. But for right now we are just waiting and praying, willing to do what it takes to bring our baby boy home, healthy and whole!

One last note, I'm glad to report that the "Creek Clan" is back together. Our three daughters, Kara, Megan and Rachel joined us in Seattle yesterday. They stayed behind in Wenatchee for a week, so that Jenni and I could focus our attention on Braden and prepare for surgery. We missed the girls so much, but we never worried because they were in great hands. Pastor Jerry and Linda Beebe cared for them while we gone (We love the Beebe's!!!). And a shout out to their daughter Jessica, too! Then my wonderful in laws drove to Wenatchee, snow storm and all, and brought the girls back to Seattle for us. Words can't express how much we appreciate everyone who has rallied around our family during this time.

We pray God's blessing to you all,

Darth & Jenni

Pre-surgery photos

2008-12-13T16:49:00.001-08:00

We have wanted to add more photos for some time. Here are a few of our favorites...

Post surgery update

2008-12-12T22:03:00.000-08:00

This was the longest day of our lives! To say that Jenni and I are exhausted would be an understatement. Thank you for your prayers, they really carried us all day long. We thank the Lord for His grace and mercy!

Here is a short summery of surgery day:

We checked in to Children's at 6:45 am.
After waiting for 45 minutes we were escorted to a private room for final instructions and preparations for Braden (Jenni & I were able to pray over Braden one last time).
At 8 AM I placed Braden into the arms of the anesthesiologist, and they were off to the O.R. (this was the hardest thing Jenni and I have ever done).
Jenni and I found a quiet place to wait and pray.
At 10:18 AM we received word that the surgery was underway.
Then later, at 2:30 PM, we were notified that the surgery was finished and Dr. Cohen was on his way to meet with us.
Braden's operation went very well. The arterial switch and moving of the coronary arteries went smoothly, while the ventricular septal defect (hole in the bottom chambers) was a difficult fix. The opening was so large that it took all the surgeon's skills to close it (Dr. Cohen stated that if the surgery had been performed at birth, there was no possibility he would have been able to close it, which would have constituted another surgery at a later date). So praise God that we were able to wait a few weeks, and only one operation was needed!
After some time Braden was moved to the Cardiac Intensive Care Unit where Jenni and I were able to see him. We tried to prepare ourselves, but it was very difficult to walk into his room. I've never seen so many wires in all my life!
But thanks to every one's prayers and support we were able to make it through the day!

Now, as the healing process begins, there are a few specific prayer requests:

Please pray that the pacemaker that is helping Braden's heart pump will only be needed for a short time. That his heart will become strong and able to pump with no assistance.
Pray that he will heal quickly and there would be no complications of any kind.
Please pray that Braden will be on his ventilator for only a short time, being able to breathe on his own as soon as possible.
Pray that every part of Braden's heart will function as designed by God.

We look forward to giving more updates as the Lord brings healing to Braden's heart and body!

God bless you all!

Darth & Jenni

Surgery Tomorrow

2008-12-11T21:52:00.000-08:00

Well, it looks like tomorrow is really going to be the big day. After so many delays, we are feeling really positive about getting our precious boy's heart healthy so we can get him home! We have enjoyed our unexpected time with Braden. He is a wonderful gift from God. Tomorrow will be hard but we know Jesus is with us and will be with Braden in that operating room. Thank you for standing with us in prayer. We will be sure to let you know how he is doing as soon as we can.

-Darth and Jenni

Change of Plans

2008-12-08T19:56:00.000-08:00

Today, December 8, Darth and I took Braden to Children's for all his pre-op appointments. Everything went well, although it was a long day. We spoke with a lot of people, were given more information than we could digest, and spent way too much time in waiting rooms! Overall everything looks really good for the surgery and we feel very confident in the care Braden will be receiving at Children's.

When we met with our surgeon, he informed us that there was to be an emergency heart transplant this evening, and since it would be a late night for him, surgery would be postponed to Friday, December 12. He told us we would not want him doing surgery on our son with too little sleep. We agreed!

We had mixed feelings with the change in surgery dates, glad to have more time with Braden, sorry to not be getting on with the surgery and recovery, but also realizing that someone has lost a child. There is also a family getting a new chance at their child being healthy by getting a transplant. Please pray for the families involved with that. We of course don't know any names or specific circumstances, but it will be a difficult time for both families. Our hearts and prayers are with them.

We are looking at this time, waiting till surgery, as a blessing. Hopefully we can catch up on sleep and really focus on getting Braden's weight up.

We love and appreciate all our wonderful supportive extended family!

-Darth and Jenni

Time to pray!

2008-12-06T10:44:00.000-08:00

We're days away from surgery and it's time. In the past week Braden stopped putting on weight and was getting tired during feedings, falling asleep and being lethargic. He had to be put on a feeding tube. It actually sounds worse than it is. We were all traumatized slightly by its insertion (Daddy, Mommy & Braden), but now that it is in place, it's really helping Braden keep his food and meds down. In fact it has been so easy feeding him we have considered requesting them for our other picky eaters. It would be so much easier to get veggies into the girls that way. Sounds terrible I know, but at our current point in life, Darth and I are grasping to lighten the moments when we can. The overlying stress of this week, preparing to return to Seattle for surgery . . . , to describe it "intense" is an understatement.

With the feeding tube, Braden has plateaued at the same weight. We were hoping for major growth and weight gain. Still, we are encouraged that he is no longer losing weight. And, he looks so good, a bit on the skinny side compared to our other babies, but definitely bright-eyed, great color, alert. In our educational process with Braden's heart defects, we have learned that the signs we are seeing are really leading to surgery; there is no good reason to wait longer.

Going into this whole thing, we knew there was no way to specifically predict the exact way things would go. It continues to amaze us that we were able to even bring Braden home in the first place. Having him home pre-surgery wasn't even a thought for us so we have been blessed again and again by our time here.

On Tuesday, Braden is scheduled for surgery involving an arterial switch to fix the Transposition of the Great Arteries (TGA, also referred to as TGV, Transposition of the Great Vessels) and to repair the Ventricular Septal Defect (VSD). Now that surgery is so close, we have some really specific things to pray for:

The tricky part of the surgery (arterial switch component) is working with the coronary arteries. Please pray that the delicate arteries would be easy to work with as they are switched from the pulmonary artery to the aorta. Pray that the coronary arteries will in no way be harmed during the procedure.
Pray for our surgeon by name, Dr. Cohen, that Jesus will guide his hands and give him wisdom during the surgery. There will be another surgeon working with him, either Dr. McMullen or Dr. Permut. Please pray that they will work well as a team in their care of Braden.
Since the hole in the lower chambers is large (VSD), please pray that it will be repairable with one surgery.
Please pray that Braden's body will respond well to the medical procedures, that he will recover quickly.
Pray for peace over our immediate and extended family, to trust the Lord with every report, that He will make us strong on the days of pre-op appointments, surgery and recovery days immediately following.
Health! For Darth and I to get the rest we need to stay healthy and for our girls' health, especially during the winter months.
Please pray that we would have wisdom in parenting our other 3 children during Braden's surgery period, that they would feel secure in our love for them and not be overly fearful for baby brother.

We have been so supported during this time by friends, family, our pediatrician and other medical personnel, and church. Thank you Jesus for the amazing, loving, giving people you have placed in our lives to help us through this difficult time! We may seem strong, but it is the confidence in the Lord and His ultimate control over life that we are relying on each day. He is good and He knows what He is doing and we trust Him. Again, thank you for praying; please don't stop!

-Jenni & Darth

Happy Thanksgiving!

2008-11-28T21:15:00.000-08:00

We spent a quiet Thanksgiving at home this year, the first in Darth's and my married life. It was fun to put together the whole meal for once. We even got some leaves raked and bagged and watched Miracle on 34th Street. It was different (the theme of this year!) but nice.

Braden mostly hung out in his baby swing and slept the day away. He wasn't overly impressed with the holiday. It sure was a blessing to have him with us though. As we went through our "thankful" list as a family, everyone listed baby Braden. We have much to thank the Lord for!

We have had numerous check-ups each week, between our pediatrician and the Children's cardiologist that visits Wenatchee. Braden's weight is still not up to his birth weight, so we are giving him extra calories using bottle-fed milk with formula added. Hopefully he will gain significantly in the next week and a half. Our pediatrician wasn't overly concerned by it and says Braden is looking really well. Still, the doctor does want to see more growth. Braden had a stuffy nose the past several days and it made feeding and keeping it down a bit harder. He sounds great today and has done well so we are encouraged.

It has been a joy to have Braden spending some more awake time, just focusing on faces or checking out his surroundings. He likes to focus on his black and white stuffed cow and really likes a wall-hanging by the changing table starring Winnie the Pooh characters. Eeyore's tail is a high-light; He just stares and stares at it. Braden has beautiful deep blue eyes and the cutest dimples! We love to sit and admire him.

The surgery date is quickly approaching. December is around the corner and we dread it in part, but look forward to getting on with it all. We just so badly want Braden to be well and have all this behind us. Before, we were looking forward to the birth on our Seattle trip. This time the surgery is the all-encompassing focus and it is overwhelming. But the amazing thing is this crazy peace that covers us. We really should be freaking out at this point. Part of me wants to, but Jesus in His love and mercy won't let me go there. He has put this confidence so deep in my heart that He is in control. How many people face open-heart surgery with their newborn? So scary, but we know Jesus is near, He has not brought us or Braden this far to drop us now. How do people cope with life without the Lord? I never want to know. It is great to celebrate and give God thanks in the good times, but absolutely necessary to know that He will never leave or forsake you in the hard times.

We have heard from so many of you that are praying. Bless you for your diligence and compassion for our son. God has a plan here and we are trusting Him with the results. He has not given us a spirit of fear, but of power and love and a sound mind.

Happy Thanksgiving,

Jenni, Darth and girls

Thank Heaven for Little Boys!

2008-11-20T21:11:00.000-08:00

It has been almost a week since Braden came home. What a wonderful week! He has happily settled into life as kid number four, sleeping through all the numerous hugs and kisses from doting sisters.

Braden went to visit our pediatrician on Monday and sees a Children's cardiac team doctor tomorrow for his weekly echo cardiogram. Darth and I feel so good having him home, while still getting such great medical care. As wonderful as Children's Seattle is, it is so good to be home waiting for surgery rather than at the hospital. Braden is healthier for it, getting good sleep and feeding on a regular schedule. He is away from germs and the noise. Of course we have noise galore at our house, but he's used to that, from months of exposure. It just is not so muffled now that he's born. He just sleeps through it anyway.

Baby and I have been basically hibernating at home. That is a drastic change of pace for me since I am usually so involved at the girls' elementary school and with teaching piano lessons. I have to say I am enjoying it! Being forced to just "be" for this period of time is good for reflection and for being able to focus on our wonderful son. He is amazing, such a fighter. Praise the Lord for so many answers to prayer already.

From Braden's Mommy

Home Sweet Home

2008-11-14T23:42:00.000-08:00

We are home! It is beyond our comprehension, but yesterday we were discharged. Braden has done so well that the team of doctors decided it was in his best interest to go home and to allow his heart to grow a bit more. Surgery has been rescheduled for December 9. The VSD (ventricular septal defect) is larger than we realized. If his heart is allowed to grow, it will give the doctors more to work with in making that repair; the VSD will remain the same size. This is still a good thing though with the Transposition of the Great Arteries because his blood is getting the oxygen it needs through that large VSD.

We will be meeting weekly with a Children's cardiology team while back home waiting for surgery. Even though it was scary leaving the hospital with a newborn needing heart surgery, we are beyond thrilled to have Braden with us. Can we just say how incredibly awesome it is to have all the wires and monitors off our precious baby boy?! Every time we held him, some beeper would go off because a monitor patch had come off his chest or his heart monitor slipped off wherever it had been placed at the time. His IV is out and the bandaid on his head is the only reminder of where it was.

While still at Children's, we were able to spend a lot of time with Braden once he was moved to the floor, Tuesday the 11th through Thursday the 13th. It was certainly different than NICU (neonatal intensive care unit). He was in a HUGE bed and shared a room with a teenage boy. We had great nurses, but it just felt so strange to have a newborn in that room, looking so small and helpless. It was hard to leave him there. Darth and I took turns sleeping overnight with him, but of course one doesn't really sleep in the hospital. We are pretty much exhausted.

Now that Braden has been discharged, our girls have been smothering him with love and kisses. They beg to hold him all the time; he is in great danger of being spoiled. Oh well. It was fun to bring him in for bedtime prayers with the whole family. We are blessed.

It is hard to think of having to head back to Seattle for surgery, especially so close to Christmas. Darth and I just keep saying, this is God's thing, not ours. He has had his hand on us from the beginning and we will continue to walk in faith and trust and to hold on to what we know is true. And in the meantime we keep praying for that miracle healing, though we admit we have seen huge miracles in the way things have gone even this far. Braden is just doing so well!

Please keep praying!

Darth and Jenni

Happy Birthday Braden!

2008-11-11T12:36:00.000-08:00

The Journey...

On Tuesday, November 4th, our doctors decided to send us to Seattle. They wanted to perform daily NST's (Non Stess Tests) on Braden to make sure his heart was handling the contractions well. So we had a couple of hours to pack things up and head out of town. The University of Washington was expecting us Tuesday night for the first test. Everything was going well, then on Saturday morning, Jenni's water broke. We checked in at labor and delivery and after many hours we welcomed Braden into the world at 6:38 PM. His weight was 7.2 oz. and his length measured 19 1/2 ''. He is absolutely beautiful. Jenni was able to hold him for a little bit before he was sent to NICU. Once there, Braden was prepped for transfer to Seattle Children's Hospital. After we had a chance to say goodbye, I followed Braden down to the ambulance. It left at 8:30 PM and I followed later after the Husky football traffic died down. I was able to spend some time in Braden's room at Children's.

Jenni was amazing, I have such a respect for mothers!

- Darth

Note from Jenni:

What a crazy time! It was not convenient to pack up and leave mid-week like we did. We threw our things together in a matter of hours and headed to the UW on election night of all times. Our girls have been completely off schedule for days, but are showing their skill at being flexible. We do not regret pulling them from school to be with us, except occasionally when they are whining or bickering with each other!

Some really good things to report:

We were in the Seattle area early! We were supposed to drive over on Saturday for a Sunday inducement, but my water broke on Saturday. Thank you Lord for taking care of those details.
Braden only had to be on Prostaglandin for a short while. This means his blood is getting the oxygen it needs without Braden having to be on that medicine and experiencing its side-effects.
Braden has been nursing and taking bottles with pumped milk or formula!
He will be transferred out of NICU today (11/11) to go to the floor because he is doing so well. Unless there are complications, he will remain there until surgery.
Our housing issues are settled and the big sisters are getting used to their new home away from home.
We have had wonderful help from family, with childcare, laundry, grocery shopping. We could not have done this without them.
We have felt the Lord's peace every step on the way and know people are praying.

We love and appreciate you!

Jenni

November Update

2008-11-03T21:27:00.000-08:00

November is finally here and our excitement is growing. In just a matter of days we get to meet Braden. He is busy wiggling and squirming these days, trying his best to keep mommy from sleeping too much. The girls all agreed tonight that mom's tummy is a watermelon. Thanks! They are counting the days till little brother comes.

We have been so blessed in the past few weeks with showers of love from our church family and friends. The Lord has amazed us again and again at providing for seemingly insignificant things that are really so huge in these stressful days of preparation. Housing is coming together for our stay in Seattle. The financial pressures are being eased with amazing programs we never knew existed. In our gratefulness to agencies and individual personnel, we keep coming back to the realization that God is our Source. He can do anything. We know it in our heads and yet when He comes through in these amazing ways, it floors us with humility to think the Maker of the Universe knows and cares about us, His Children.

The teachers at the girls' elementary school have been fabulous, really rallying behind them, making them feel loved and prepared for the long absence. The materials gathered by those teachers will give us the benefit of homeschooling without the hours of prep. The teachers did all the work! God bless them!

The next post will contain news of Braden's arrival. We will keep you up-to-date to the best of our ability and have pictures as soon as possible.

Jenni

Last Prenatal Appointments in Seattle

2008-10-20T09:34:00.000-07:00

On Friday, October 17, Darth and I spent most of the day in doctor appointments and consultations. It was an informative day and our brains were exhausted by the time we were done. It was great information to receive, however, because we are getting so close to Braden's arrival and our excitement is growing.

We started off with our last fetal echo cardiogram. Braden's condition has remained consistent as far as the congenital heart defect goes. The test showed okay heart function and the plan is still to have his operation sometime after the first week. We also found out that Braden will likely go to the UW Newborn Intensive Care Unit (NICU) before transfer to Children's. Still praying we will get to see him a bit before all that occurs.

Next came the ultrasound and it went so well. All the concerns that have come up during the past months were just not an issue. Thank you God! The perinatologist (high-risk obstetrician) has us scheduled for an induction at the University of Washington on Sunday, November 9. We hope to have a baby that day, but with an induction who knows. We get to call in the morning to find out when to come in so it's a waiting game for all. Darth and I were told again to expect a month long hospital stay.

We met a neonatologist on this visit that was able to answer questions regarding the process to stabilize Braden. Even though he may not be there when baby boy is born, this doctor was so reassuring about the care Braden will receive. It also gave us an idea how many people to expect in the delivery room! I was envisioning a good dozen, but it looks like about half that many. Who cares at that point! Just take care of my baby! :) We have no grand expectations for this delivery experience. This whole pregnancy has taken such a different direction that our priorities are very focused and practical.

Our last appointment was with one of the two surgeons that will be performing Braden's heart surgery. He told us to not expect surgery before 7 days old. Darth and I were able to ask questions and clarify information we have learned over the months to get an accurate idea of what surgery and recovery will be like. The surgery is long, with prep, actual operation, and such, approximately 7 hours. The surgeon reassured us that really he doesn't watch the clock, he just focuses on the patient and what needs to be done. We just plan on it being a long day.

This is all still really scary stuff for us. Heart surgery on a newborn is unfathomable for me. Yet this is our reality. Should Jesus not heal him in a miraculous way, we are proceeding with the knowledge that He uses doctors too. And we have some of the best on our team; we are so grateful! Children's Seattle is amazing.

By the way, the posted picture of Braden is a 4-D ultrasound picture taken at one of my Wenatchee ultrasound appointments. We received several pictures of his face, a cute foot shot, and one of his hand, showing long fingers. The miracle of life is wonderful. Those pictures have brought so many smiles to our faces to see our little pumpkin Braden!

Thanks for continuing to stand by us and to pray for our family and little boy.

Jenni

Five weeks and counting

2008-10-05T20:38:00.000-07:00

The past several weeks have been filled with much preparation as we get ready to welcome little Braden to the world. Tomorrow (October 6) it will be 5 weeks until the inducement and it seems there is so much to be done between now and then with the daily commitments of work, home and family.

We wanted to share some areas of gratitude! For starters, God has worked some amazing miracles in providing for our family financially during the last several days and we give Him all the praise for taking care of us. This faith walk we're on gets more and more amazing all the time. Our current situation has caused us to reflect on all the times the Lord has come through for us in the area of finances in the past. Those experiences has proved invaluable for trusting Him once again in this new life adventure. Our medical bills were starting to pile up with all the tests and appointments. Even with the great insurance we have, Darth and I were starting to think, "OH MY! We haven't even HAD Braden yet and the bills are stacking up!" Kind of scary territory. But, we know Jesus is our source of hope and His timing is very humbling. Last week we found out we were approved for financial aid with one medical facility and that our account balance showed zero! This past week we were also able to get rid of some credit card debt that was really hanging over our heads. Our stress level has been significantly reduced! Thank you Lord!

Another good report is that we have had tests every week here at home in Wenatchee since our last Seattle appointments and Braden looks great. I have had two non stress tests (NST) and an ultrasound. There has been no noticeable excess of amniotic fluid and Braden has passed both NST's with flying colors. The ultrasound brought up an area of concern that was cleared up by the second NST so really things are going well. We are relieved with every good report and are choosing faith over fear with the others! And, this will come as a shock, but the ultrasound showed Braden already has a good amount of hair. All our babies have had a full head of hair, with each one having more than the last. It will be fun to see what Braden looks like! He is almost 5 pounds according to the ultrasound so his growth is right where it should be.

Lastly, we are getting encouragement almost daily with phone calls, cards, and conversations, people telling Darth and I that they are praying, encouraging us with their own stories of trusting God and His faithfulness. We know our family is walking in peace because of those prayers and words of encouragement. We are worriers by nature and this whole thing is so out of our control. But God, who knows exactly what we need when we need it and who know precisely what tomorrow holds, is our Rock during uncertain times.

The Lord bless you and keep you, make His face shine upon you, and give you peace.

Jenni

September 14th Update

2008-09-14T18:14:00.000-07:00

Thank you to all of those who faithfully check this site for updates! We apologize for neglecting to post, the start of school and three kids in soccer has kept us from being overly reflective. However, the time for little Braden to make his grand entrance is quickly approaching. We can't believe we are looking at meeting him in just 2 months time. Staying busy has been beneficial as it keeps us from obsessing about things we just can't control.

Earlier in September, I failed to pass my glucose tolerance test (by a very small margin, I might add). That meant having to take the three hour test and 4 more blood draws. I am not a fan of needles or having blood work done so this was not a happy time for me. Thankfully the results came back within acceptable range and I do not have gestational diabetes. I appreciate all of you that were praying for a good report.

On September 12, Darth and I went to Seattle for all of our UW and Children's appointments compressed into one day. The two facilities have been so gracious to work with us and make this time as convenient as possible.

We started our appointments at the UW Hospital, with an ultrasound. This time the sonographer only looked at certain things to assess growth, which looked good. Darth and I had a tour of Labor and Delivery following the ultrasound. It was helpful to get an idea of where the induction will take place and familiarize ourselves with the facility. We were able to ask questions about where Braden would receive his stabilizing treatments and other questions that have come up since our last visit.

After lunch, we met with the OB that will deliver Braden. She was pleased with his growth and the overall health of my pregnancy. The doctor did express concern, however, about a slight excess of amniotic fluid, which was evident on the ultrasound. This has prompted her to request bi-monthly ultrasounds and non-stress tests, some in Wenatchee and then again in October back at the UW. We are trying not to be concerned by every new finding and are reminding ourselves that this pregnancy is under the microscope more than any of our other three. Still, we would love to come home and not have another new thing to worry about. Please pray for us to walk in faith every day that the Lord knows what He is doing and He has the details under control! We know it in our heads but our emotions keep getting in the way!

Next we moved on to Children's. Can I just say how wonderful it has been to work with people there? Amazing! We have been blessed to work with compassionate doctors and nurses who are showing the love of God whether they know it or not. There was another fetal echo cardiogram and consult with a cardiology specialist. This test showed that the heart has good symmetry and function, despite the defects. Darth and I were able to ask more specific questions about surgery, housing, etc. and we were given straight-forward, helpful answers. It was a good balance to the concerns raised by the ultrasound. We left Children's feeling optimistic and relieved, especially since a watch had been placed on the right ventricle at our August appointment. The cardiologist was not concerned by its size on this visit.

Here are some specific things to pray for:

That the extra amniotic fluid would not be a sign of another health problem or syndrome
Peace over our home and children during these remaining weeks, as well as into November with Braden's birth, surgery, and recovery
Health for our family, now and after Braden is born
Financial wisdom and provision
That Darth and I would stand on the Word of God and not give in to worry about things that are out of our control

With frequent appointments, we will be able to keep you up to date more often. Thank you for your continued support and prayers.

Jenni

August Update

2008-08-18T21:45:00.000-07:00

On August 14, Darth and I were back at the University of Washington for another ultrasound and OB appointment. It was a long day of appointments, but overall the consensus was that Braden is growing and that I am healthy and growing as well! It was good to have that positive news.

It sounds like I will be induced a bit early, just to make sure everything and everyone will be in place to receive our little guy. Though I am not too excited about that, not being a huge fan of pitocin, it does look like the best option and will allow Darth and I to plan out "life" for our girls a bit better.

An interesting event from that day was we ran into a couple we know that is experiencing pregnancy challenges of their own. The OB clinic was running late so we sat and encouraged each other as only someone with experience can. Once in the patient room, Darth and I sat amazed at the way the Lord set up that very special time for us and the other couple. Now as we think of Braden, we are also praying for a miracle for that family and their unborn baby boy. This whole experience has been so humbling as we depend on the strength of Jesus Christ to give us the grace for each day as well as grace to extend to other hurting people. God is good.

On Friday, August 15, we were at Children's Hospital for another fetal echo cardiogram and consult with a pediatric cardiologist. Braden was very cooperative and held still for the pictures of his heart. We were very proud of him; usually he has what our youngest daughter Rachel calls a "party". The previous diagnosis was confirmed, though we were really hoping for our miracle. The cardiologist also expressed an interest in watching the growth of Braden's right ventricle. He called it "borderline normal" and wants to check again in a month. That kind of concerned Darth and I, but once we were back home we contacted our pediatrician and he reassured us that these specialists are looking for abnormal to help them prepare for how to best help Braden. Borderline normal is not cause to panic. Still we would appreciate your prayers on this specific issue, as well as continued prayer for his overall healing.

We are striving, with God's help, to walk by faith and not by sight. On the ultrasound and fetal echo cardiograms, we see the diagnosis with our eyes, the proof is visible. Yet, we know from God's Word and through our own experiences that we serve an amazing, powerful Creator who can do more than we ask or imagine. We are experiencing the peace of God and know people are praying. Thank you for walking this road with us. We are grateful.

Jenni

New perspective

2008-08-05T16:24:00.000-07:00

In my position as a worship pastor I have lead congregations in singing hundreds of choruses and hymns. I love to sing and play these melodies for the Lord. But there is one song in particular that has new meaning to me in light of Braden. The song is titled, "You are the one", by Lincoln Brewster and Paul Baloche. Here are the lyrics:

You're the One who made the heavens
You're the One who shaped the earth
You're the One who formed my heart
Long before my birth
I believe You'll always lead me
All my days have been ordained
All Your thoughts toward me are holy
Full of love and grace

You are the One You are holy
You are the One You are worthy
You are the One You are the One Everlasting
You are the One I will worship
You are the One I will serve all my days
You are the One You are the One Everlasting
You are the One
Jesus You're the One

Jenni and I know that Braden is still being formed, and our prayer is that when born, his heart will be healthy, whole and completely healed. We believe that Braden's days are ordained and that God has a purpose and plan for him. Thank you for your continued prayers!

Last week Jenni met with her doctor here in Wenatchee and everything looks good. Braden is growing and very active. Our girls have enjoyed feeling his kicks and somersaults! Next week we head back to the University of Washington and Children's Hospital for follow up appointments. I will post an update when we get back to Wenatchee.

Blessings,

Darth

What's in a name?

2008-07-17T19:43:00.000-07:00

Our plan from the beginning of this pregnancy has been to find out the gender of our baby and to keep the name a secret until birth. When we discovered the challenges we were going to have with our son's health, we decided to let his name be known so we and others can pray specifically. Here is some insight into the significance of the names we have chosen:

Braden
Language/Cultural origin: English
Inherent Meaning: From the broad clearing
Spiritual Connotation: Redeemed
Scripture: Romans 5:9, "And since we have been made right in God’s sight by the blood of Christ, he will certainly save us from God’s judgement."

Robert
Language/Cultural origin: Old English
Inherent Meaning: Bright in counsel
Spiritual Connotation: Abiding in God
Scripture: 1 John 4:13, "And He has put His own Holy Spirit into our hearts as a proof to us that we are living with Him and He with us."
(Robert is also Darth's father's first name)

Please feel free to share our son's name with others. It's wonderful to know that people will be praying for Braden by name.

Thank you to those who have left comments, sent cards and taken time to pray for us. We appreciate your love and support. God bless!

Darth & Jenni

Medical information

2008-07-11T15:10:00.000-07:00

While doing some research online I found these sites that give more detail to Braden's heart conditions, Transposition of the Great Arteries (TGA) and Ventricular Septal Defect (VSD). In visiting these resources you will find written descriptions, pictures and diagrams (some even animated) that will help in understanding these defects and the sugerical procedures offered to correct them.

While we thank God for medicine and all those who work in the medical field, we know that God is the ultimate physcian and are trusting Him for a miracle. As God's will is unfolded in our lives we must journey this road one day at a time. Thank you for your continued prayers and for standing in faith with us for our son Braden.

God bless you all!

Darth

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/graphicsummaries/transwf.htm

http://www.childrenshospital.org/az/Site511/mainpageS511P0.html

It's a Boy!

2008-07-10T17:42:00.000-07:00

On Tuesday, July 1 we learned that we are having a boy! Darth and I are very excited and the girls are too. We have always felt that a family of four kids was the Lord's plan for us. We are thrilled He has blessed us with a son. Braden Robert Creek is expected to arrive near Thanksgiving, a great way to celebrate the holidays! There are many reasons to give thanks.

The ultrasound not only showed our baby's gender, but some other news as well. Although our son looks great overall, the images showed some abnormalities with the baby's heart.

On Tuesday, July 8, we went to Children's Hospital in Seattle to have a fetal echo cardiogram and on Wednesday, July 9, went to the University of Washington for another ultrasound. Both tests confirmed that our son has two congenital heart defects: Ventricular Septal Defect (VSD) and Transposition of the Great Arteries (TGA), both serious conditions, requiring surgery within days after birth.

Darth and I have learned more about the heart in the past week than we ever thought possible. There have been a lot of prayers and tears and we are so grateful that Jesus has promised to never leave us. This is not the pregnancy we anticipated. Life has changed drastically in a week's time.

Here's the good news: we have hope! This is an operable condition. We have great doctors and support in Seattle and here at home in Wenatchee. Our family and friends have already been incredibly encouraging. We have the Lord, who is completely able to heal Braden and to give us the strength and grace to walk the path He has placed before us.

The ultrasound showed a very healthy baby boy with an unhealthy heart. We are still processing this huge life curve and it is still a shock to us. It is difficult for us to discuss and as you can imagine, there are a lot of concerned people with a lot of questions. Please continue to check this site for updates and feel free to leave messages of encouragement. At this point your prayers would be the most helpful.

Here are some specific requests:

Healing! We serve a BIG God! We are still believing Him for this! We will be having follow-up visits in Seattle and would love nothing more than to have the conditions miraculously healed!
That Braden will be a healthy weight, the bigger the heart, the easier for doctor's to operate
That the pregnancy will continue to be without further complication, healthy mom and baby
No other health problems or syndromes (looks unlikely at this point)
Wisdom with decisions regarding life with children during a possible month hospital stay

If you are interested in learning more about either of these defects, you can check them out at the American Heart Association website, http://www.americanheart.org/presenter.jhtml?identifier=1682

Thank you for your support and prayers. As we gain information, we will add to this site so you can be aware of what is happening. Our next Seattle appointments are in mid-August.

Darth and Jenni