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
Tuesday, April 14, 2009
Friday, April 3, 2009
Too Much of a Good Thing!
Our in-home care nurse came today and "discharged" Braden. He is doing so well that he doesn't need close monitoring anymore. We will miss Nurse Michelle, but what great news! Braden weighed 11 lbs. 4 oz. today. We were advised that it is time to cut back the calories. Mr. Chubs gets only 24 calories now instead of 28. Yea Braden and thank you Lord!
Thursday, April 2, 2009
Pacemaker Check-up
On Sunday, March 29, we packed up four kids to head over the Cascades. It was the first family trip we have taken with all the children. It is so wonderful to have Braden doing well enough to travel some. Progress! We were able to stay with Darth's parents and have some family time with them. Darth's grandma came over too and rocked little Braden to sleep, cuddling him for over an hour. It was a sweet time for both of them.
Monday morning we packed up again and headed to Seattle for our appointments at Children's. The girls all went to the sibling playroom for crafts and Darth and I took Braden to the Cardiology appointments. He weighed in at 10 lbs. 14 oz. and measured 23 inches long--- still just a little guy, but definitely holding his own! Braden had an EKG and a pacer interrogation. Both showed good heart and pacer function. The pacemaker beats per minute setting was lowered at bit so that it simulates a more natural heart rhythm for periods of rest and sleep. Then the pacer was backed out to see what Braden's heart would do on its own. The tech lowered the unit's levels to see when the heart would kick in, if it all. Braden has a very low underlying rate, around 40 or 50. A low rate is better than no rate. We weren't discouraged by this appointment. God is still working in the life of our son. Our job is to trust Him. We just keep praying for a miracle.
Braden saw Dr. Chun to follow-up the pacer check. He said at least three times how good Braden looked. We think so too and how reassuring to hear it echoed by doctors! Dr. Chun was able to adjust the pacemaker settings to save the battery life, saying that sometimes these batteries can last up to 8 years. The pacers that adults have can last longer, more like 12. We appreciate anything that will keep our boy from more surgeries.
Because the appointments at Children's are for kids, the schedule doesn't stay on time. We had quite a wait for our doctor, so at one point, Darth and I decided to have me take Kara, Megan, and Rachel to lunch in the cafeteria while he stayed with Braden in the room. (Six people in a tiny exam room doesn't work. There is only one spinning wheeled doctor's stool and that is the room's highlight for elementary aged children! Plus, Braden was tired of waiting so he had to be bounced and paced back and forth and the adult doing the bouncing kept running into the stool rider . . . ) So we headed to the elevator to go have yummy cafeteria food---for the girls. (I was grateful for meals while Braden was hospitalized but seriously, I NEVER want to have to eat another meal there if I can help it.) Anyway, we were just about to go in to the cafeteria and we bumped in to a mom we met back when Braden was first born and hospitalized, in November. Her daughter frequents Children's with a serious medical condition and was there again for another surgery. My girls befriended and played with this little girl at the Ronald McDonald House. Every night they pray for her and ask Jesus to heal her, to help her family know He is with them. It is very precious and we have a special spot in our heart for this little girl, her mom, and family. Jesus amazes me at His timing, to have us both at THAT elevator at that exact moment for a few minutes of encouragement. Once again we see the way God works everything for good. Not everything IS good, but He takes the junk of life and shines bright spots into dark days. We continue to pray for this family. They need a miracle for their sweet girl.
Our mini-getaway continued as we left Seattle and headed north to my parents beautiful new home. I think we broke it in! It was a fun time of laughter, too much tempting food, and lots of family. Braden did great at night (Whew! Especially considering all the coffee and chocolate I had!) and loved all the attention from grandparents, aunties and uncles. We (four of the five siblings) even surprised my parents with a mini-celebration for their 40th wedding anniversary.
Monday morning we packed up again and headed to Seattle for our appointments at Children's. The girls all went to the sibling playroom for crafts and Darth and I took Braden to the Cardiology appointments. He weighed in at 10 lbs. 14 oz. and measured 23 inches long--- still just a little guy, but definitely holding his own! Braden had an EKG and a pacer interrogation. Both showed good heart and pacer function. The pacemaker beats per minute setting was lowered at bit so that it simulates a more natural heart rhythm for periods of rest and sleep. Then the pacer was backed out to see what Braden's heart would do on its own. The tech lowered the unit's levels to see when the heart would kick in, if it all. Braden has a very low underlying rate, around 40 or 50. A low rate is better than no rate. We weren't discouraged by this appointment. God is still working in the life of our son. Our job is to trust Him. We just keep praying for a miracle.
Braden saw Dr. Chun to follow-up the pacer check. He said at least three times how good Braden looked. We think so too and how reassuring to hear it echoed by doctors! Dr. Chun was able to adjust the pacemaker settings to save the battery life, saying that sometimes these batteries can last up to 8 years. The pacers that adults have can last longer, more like 12. We appreciate anything that will keep our boy from more surgeries.
Because the appointments at Children's are for kids, the schedule doesn't stay on time. We had quite a wait for our doctor, so at one point, Darth and I decided to have me take Kara, Megan, and Rachel to lunch in the cafeteria while he stayed with Braden in the room. (Six people in a tiny exam room doesn't work. There is only one spinning wheeled doctor's stool and that is the room's highlight for elementary aged children! Plus, Braden was tired of waiting so he had to be bounced and paced back and forth and the adult doing the bouncing kept running into the stool rider . . . ) So we headed to the elevator to go have yummy cafeteria food---for the girls. (I was grateful for meals while Braden was hospitalized but seriously, I NEVER want to have to eat another meal there if I can help it.) Anyway, we were just about to go in to the cafeteria and we bumped in to a mom we met back when Braden was first born and hospitalized, in November. Her daughter frequents Children's with a serious medical condition and was there again for another surgery. My girls befriended and played with this little girl at the Ronald McDonald House. Every night they pray for her and ask Jesus to heal her, to help her family know He is with them. It is very precious and we have a special spot in our heart for this little girl, her mom, and family. Jesus amazes me at His timing, to have us both at THAT elevator at that exact moment for a few minutes of encouragement. Once again we see the way God works everything for good. Not everything IS good, but He takes the junk of life and shines bright spots into dark days. We continue to pray for this family. They need a miracle for their sweet girl.
Our mini-getaway continued as we left Seattle and headed north to my parents beautiful new home. I think we broke it in! It was a fun time of laughter, too much tempting food, and lots of family. Braden did great at night (Whew! Especially considering all the coffee and chocolate I had!) and loved all the attention from grandparents, aunties and uncles. We (four of the five siblings) even surprised my parents with a mini-celebration for their 40th wedding anniversary.
Friday, March 27, 2009
Mini-March Madness
Well, we have our own March madness going on in the Creek household----busy, busy, BUSY! But in a good way! The girls are enjoying the nice weather, lots of school activities, play dates, and now SPRING BREAK! (We are all ready for a week of being together and not playing beat the clock. ) Darth has been introducing Braden to the wonders of college basketball for some father-son bonding. Don't worry, we aren't turning him into a TV baby! His time is monitored!
Braden is just doing fantastic. He has gotten so busy with his arms and legs, making diaper changing time quite the event, like trying to capture and contain a hurricane. Today he had an appointment with an occupational therapist (OT) and a speech therapist (SP) to evaluate him based on age-appropriate development. Overall the results were good. He does qualify however for the intervention, so we will be having a monthly visit from the OT to help Braden with his fine and gross motor skills. The OT was pleased with his neck control when he was in a supported sitting position. She wants us to help him build endurance on his tummy, working on multiple short sessions during the day instead of just a few long ones. We were pleased with the assessment and are ready to implement the activities for Braden's floor time. The SP didn't have any concerns at this point. Braden was "talking" and responding to voices just fine, very much in line with another baby his age.
Cute discovery this week: Braden discovered Darth's goatee. He looks at Darth's face, grasps the chin hair with his hand, and gets an interesting look on his face, kind of like, mommy doesn't have this . . . (Thank goodness!) He is in a really fun discovery phase and we are really enjoying it! I understand why having kids later in life can be good. Not that we are old, but we are considerably more relaxed this time around, really taking the time to enjoy the "moments".
We are definitely looking forward to nearing the time when Braden can be "out" more. The cold and flu season is almost past and baby is scheduled for one more RSV shot. By Easter, we hope to be able to take him, cautiously, to church and other public places. He definitely won't be a nursery baby and I will likely have to guard him carefully; tough to do, he's just so incredibly cute.
The coming of spring is mirroring an emotional spring for us, a time of new life and hope. I was mentioning to several people this past week that the season of winter was an emotional winter too, cold and depressing, with a lot of dark days. The heaviness we have felt, starting with the news of Braden's heart defects in July, until just recently, is just starting to lift as Braden becomes more and more healthy. He feels more "normal", like we felt when raising the girls as babies. Not totally normal, obviously, but more so than days past. Less doctors' appointments, decreased medications, transitioning to regular formula, weight gain, physical development, it is all bringing the hope to our hearts and home that spring is bringing to the natural world. It is a beautiful thing. We have never been entirely without hope, there has always been a thread, a whisper of the Lord that we haven't been abandoned, that He has been there every moment. It's just that before, we were holding our breath; now we can take a deep breath, sigh, and relax a bit. It feels REALLY GOOD.
From our home to yours: HAPPY SPRING! Praying that this season of spring will bring new hope and life into whatever season you are experiencing now.
God bless you---Darth and Jenni
Braden is just doing fantastic. He has gotten so busy with his arms and legs, making diaper changing time quite the event, like trying to capture and contain a hurricane. Today he had an appointment with an occupational therapist (OT) and a speech therapist (SP) to evaluate him based on age-appropriate development. Overall the results were good. He does qualify however for the intervention, so we will be having a monthly visit from the OT to help Braden with his fine and gross motor skills. The OT was pleased with his neck control when he was in a supported sitting position. She wants us to help him build endurance on his tummy, working on multiple short sessions during the day instead of just a few long ones. We were pleased with the assessment and are ready to implement the activities for Braden's floor time. The SP didn't have any concerns at this point. Braden was "talking" and responding to voices just fine, very much in line with another baby his age.
Cute discovery this week: Braden discovered Darth's goatee. He looks at Darth's face, grasps the chin hair with his hand, and gets an interesting look on his face, kind of like, mommy doesn't have this . . . (Thank goodness!) He is in a really fun discovery phase and we are really enjoying it! I understand why having kids later in life can be good. Not that we are old, but we are considerably more relaxed this time around, really taking the time to enjoy the "moments".
We are definitely looking forward to nearing the time when Braden can be "out" more. The cold and flu season is almost past and baby is scheduled for one more RSV shot. By Easter, we hope to be able to take him, cautiously, to church and other public places. He definitely won't be a nursery baby and I will likely have to guard him carefully; tough to do, he's just so incredibly cute.
The coming of spring is mirroring an emotional spring for us, a time of new life and hope. I was mentioning to several people this past week that the season of winter was an emotional winter too, cold and depressing, with a lot of dark days. The heaviness we have felt, starting with the news of Braden's heart defects in July, until just recently, is just starting to lift as Braden becomes more and more healthy. He feels more "normal", like we felt when raising the girls as babies. Not totally normal, obviously, but more so than days past. Less doctors' appointments, decreased medications, transitioning to regular formula, weight gain, physical development, it is all bringing the hope to our hearts and home that spring is bringing to the natural world. It is a beautiful thing. We have never been entirely without hope, there has always been a thread, a whisper of the Lord that we haven't been abandoned, that He has been there every moment. It's just that before, we were holding our breath; now we can take a deep breath, sigh, and relax a bit. It feels REALLY GOOD.
From our home to yours: HAPPY SPRING! Praying that this season of spring will bring new hope and life into whatever season you are experiencing now.
God bless you---Darth and Jenni
Wednesday, March 18, 2009
March Update
It's mid-March. Braden has finally passed the 10 lb. mark, most likely due to his rediscovered love of nursing. We are loving the baby chub we see him developing. He has recently discovered the "baby" in the mirror, smiling and talking to himself. Braden is continuing to show us his personality, laid back and easy to please, loving a good laugh and entertainment, a cuddle bug.
This past week, Braden has shown marked improvement in neck strength while doing tummy time. I have spoken with several people lately that weren't understanding Braden's challenges in that department. Basically, since Braden's pacemaker is placed in his abdomen, right under the skin, above his bellybutton, time spent on his belly is uncomfortable. But, that is the way to develop neck strength and the skills he will eventually need to start crawling some day. So. . . we persist with the dreaded tummy time. He doesn't detest it like he did so he must be getting used to the pressure on the pacer unit. We just received the equipment to call in Braden's pacemaker to check battery life and activity. It is so easy to feel normal with him these days. We are of course grateful for the technology, but receiving the equipment was a unwelcome reminder of his continued dependence on the pacer.
I met another mom this week who has a baby with physical challenges. It was a breath of fresh air to compare stories and to have that mutual understanding of a mother's heart. This family has walked a long road too and they continue to face difficult days. Without breaching their privacy, I'd like to ask people to please pray for this mom, her baby and family.
Braden was actually sick with a fever last Thursday and thankfully it seemed to be a 24 hour bug. Just as a precaution, he ended up on the yucky "pink stuff" (antibiotic) and it is really a fun job to try to get that dose in him. He has been taking meds orally for a long time so he is quite experienced with the funny tastes, BUT, he has put his little foot down on this one and has invented new ways to get it out as quick as we put it in. TEN DAYS of this. Yikes! At least we can give the girls their meds with marshmallows (yes, we really do that), but we're kind of stuck with him. Oh the fun!
This past week, Braden has shown marked improvement in neck strength while doing tummy time. I have spoken with several people lately that weren't understanding Braden's challenges in that department. Basically, since Braden's pacemaker is placed in his abdomen, right under the skin, above his bellybutton, time spent on his belly is uncomfortable. But, that is the way to develop neck strength and the skills he will eventually need to start crawling some day. So. . . we persist with the dreaded tummy time. He doesn't detest it like he did so he must be getting used to the pressure on the pacer unit. We just received the equipment to call in Braden's pacemaker to check battery life and activity. It is so easy to feel normal with him these days. We are of course grateful for the technology, but receiving the equipment was a unwelcome reminder of his continued dependence on the pacer.
I met another mom this week who has a baby with physical challenges. It was a breath of fresh air to compare stories and to have that mutual understanding of a mother's heart. This family has walked a long road too and they continue to face difficult days. Without breaching their privacy, I'd like to ask people to please pray for this mom, her baby and family.
Braden was actually sick with a fever last Thursday and thankfully it seemed to be a 24 hour bug. Just as a precaution, he ended up on the yucky "pink stuff" (antibiotic) and it is really a fun job to try to get that dose in him. He has been taking meds orally for a long time so he is quite experienced with the funny tastes, BUT, he has put his little foot down on this one and has invented new ways to get it out as quick as we put it in. TEN DAYS of this. Yikes! At least we can give the girls their meds with marshmallows (yes, we really do that), but we're kind of stuck with him. Oh the fun!
Sunday, March 8, 2009
3 Month Pictures
Warning! Cute baby ahead! Proceed with caution!
Go to www.mkcphotography.phanfare.com and select
"Braden" to view a super sweet slide show! Enjoy!
Go to www.mkcphotography.phanfare.com and select
"Braden" to view a super sweet slide show! Enjoy!
Friday, March 6, 2009
March News
We are into March already, enjoying the sunshine when it chooses to appear. Lucy (the beagle), Braden and I ventured out on a walk the other day. It is hard to simultaneously manage a leash and a stroller but it worked. Snow on the ground again this morning reminded us not to get too spring-feverish yet. Still it is very appealing to think about more outdoor time with baby soon.
Braden has his first cold, compliments of his sisters. It is amazing it has taken this long. The girls have struggled with cold symptoms since early January, off and on. He feels pretty well except for the stuffy nose. Poor little guy!
Today was Braden's March cardiology appointment and he had another echocardiogram. The heart looked good, still swollen. The doctors are always "watching" something but it wasn't anything that overly concerned us. Most things are presented with the knowledge that surgery can affect different areas of the heart just by the sheer fact that something unnatural has been done, it has been "messed with". The cardiologists are very zealous in their search for problems that might come up. Braden's was pronounced to be doing very well and doesn't have to be seen again for cardiology until June! The doctor also mentioned that he may be able to come off his heart meds at that time. That is encouraging news, giving meds to an infant has been very tedious. Braden has a pacer check at the end of this month, but that is a really short and sweet appointment, focusing on the function of the unit and any changes that need to be made to the settings.
Braden weighed 9 lbs. 10 oz. today, not the weight gain we would really like to see, but okay. He has the stuffy nose issue plus he has started to do a bit of nursing again which requires more energy. That means more calories burned and less calories going to plumping up the boy. We are still hoping that eventually he will be able to go back to nursing.
On Sunday Braden will be 4 months old. He has officially been home longer than he has been hospitalized! He is still uncomfortable on his tummy because of the pacemaker in his abdomen. We keep time on his stomach short. He has started grabbing hair and gets a great reaction from his sisters. Have you seen the hair on the girls? Braden is going to have a hay day! Braids and ponytails will have to be the sister style to save them from bald spots. He has also started to cackle when tickled. So cute!
Thank you for your continued prayers for Braden and our family. I know he has been so healthy and doing so well because of the Lord. Also, Darth and I are doing well and we thank Jesus for helping make a strong marriage stronger. So glad for the Love and Respect marriage conference we attended last spring. It was an investment that paid off in ways we never could have foreseen. Each day we are reminded that Jesus is our Rock in life and for the future. The news has been scary lately but no matter what happens, we know that God is still in control and that is where we place our confidence, not in people, or money, or government, or the medical community, in GOD. The peace from that knowledge is AMAZING.
"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Philippians 4:6-7, NLT
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
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