Wednesday, November 08, 2006

11-7-06 Turning a corner...


We've had a great past few days and feel like Burke has really taken a turn for the better. He's been eating more efficiently without taking in or being bothered by so much air and has all around been a happier baby...whoo hoo...and that certainly makes happier parents too! He continues to grow and change each day...more smiles and coos...it's so much fun to interact with him and watch him experience his world and love it! It still amazes me that he can find so much to smile about after everything that has happened...he is truely an inspiration!

Just to update you all on whats been happening on the home front, we've recently found a great nanny to help me during the day for about 10 hrs per week...she is wonderful and is already taking to Burke quite well. The really cool thing is she is actually a neighbor and was introduced to us by her sister who is also our neighbor AND she knows the occupational therapist who works with Burke...she comes highly recommended so we are confident in her ability to care for our precious one! I plan to return to work 10 hrs per week in December so I can have a bit of a break...I think it will really help me cope with my stress! (who would have ever though work would help with stress?) :) hmmmm...

We still continue to need prayer and support in so many ways...prayer for Burke's hearing and use of hearing aids to help him develop the auditory pathways of his brain. Prayer for continued improvement with his feeding and distention from gas. Also, we love getting meals still so if you want to drop one by...feel free! :) Thank you tons...we love you all!

Friday, November 03, 2006

Big Boy updates 11-3-06

We've had a busy week with appointments and stuff.... thought we'd better let you all know that Burke weighed in at 10# 60z on Monday...wow...what a big boy he's getting to be! It's been a busy and stressful week...despite his great weight gain, feeding Burke has become a bit more complex. He swallows an extreme amount of air during his feeds which causes him tons of pain and he's unable to finish his bottle without a big fuss (and I mean BIG fuss!). It's really frusterating for all of us and we've had to figure out ways to decrease the air intake....we've had to rig up a special tube and syringe deal that allows air to escape through without draining out all the milk he's just eaten. It's hard for me to be at home by myself feeding him with all of these issues so I'm trying to be calm and hang in there...please pray for us as we continue to encounter difficulties along the way...

Sunday, October 29, 2006

10-28-06 Burke's new girlfriend!




Our dear friends Mark & Elle Bullard came to visit and introduce us to their beautiful little girl Avery! In these pics, I'm holding Avery and Elle is holding Burke. Avery was born September 1st and this was the first time either of us had the opportunity to hold each others babies...it was wonderful! We think Burke and Avery make a very cute couple...don't you! :)

Tomorrow (monday) we take Burke for his 4 month well child check and immunizations...should be a crazy day (he'll get 5 shots)!! yikes! I'm really looking forward to knowing his current weight. Nate think's he weighs 10# 2oz and I'm wagering he's 10# 3oz (I've been right most of the time so I think odds are in my favor...hehe!) We have a busy week again with many appts....surgery clinic and occupational/physical therapy on Tuesday and audiology on Thursday. Burke will have more hearing evaluations done and probably fitted for hearing aids this week. We still pray and hope that his hearing will regenerate on it's own but know that the hearing aids will be so helpful in allowing sound to start stimulating the auditory center of the brain to build the necessary pathways so he can hear and speak!

We received great news that great grandpa is sending us a new video camera so we can document Burke's tremendous growth and development. We are pumped to be able to share more than just pics with you all on youtube.com when we get it figured out! :) to be continued...

Wednesday, October 25, 2006

10-23-06 Sweety Bear


Our little guy is getting more handsome daily and gaining weight at a positive rate. On this day, Burke was going on a walk with mommy and needed to get dressed for the cool rainy Seattle day. Burke enjoys getting outside in his stroller and checking out the sights. He is very visual and picks up on the shadows and different objects out in the world. It appears in the picture that he knows that he is going outside for another adventure.

Burke is currently weighing in at 9 lbs 11 ounces and displaying some beautiful fat roles. He has been eating very well over the last two weeks and continues to show impressive signs of swallowing, breathing and sucking. Every week Burke goes up 5 cc's per bottle feed and at this point he is at 65 cc's every feed. 600 cc's every 24 hours. The staff at Children's Hospital and Burke's pediatrician are pleased with his weight and consider him on track for his age and specific needs.

We are so proud of Burke and so thankful that he is accomplishing so much after all that he has been through. Every day he is doing something new or showing us signs that he is developing like a child should. What a joy, our little Burke.

Thank you all for continued prayers and help over the last 4 months. The support and specific needs that have been met by so many friends and family has been over the top. Never did we expect so many people stepping up and providing their love and time. From the bottom of our hearts we thank you all and Burke will grow up knowing that he is known and loved by so many people.

Saturday, October 14, 2006

10-14-06 Experiencing the world!



Burke has really grown a ton over the past week ..he is so much more interactive and playful...more and more like a happy healthy baby each day! He's been learning to reach for toys (note the toys are fish as we're hoping to encourage and develop his fishing skills early so he can keep up with his uncles on the river someday (watch out Stealth!) Burke took his first car ride yesterday and LOVED it...he was very attentive to everything...then he fell asleep...good for us but I wonder if he wished he could have stayed awake to explore his world a little more! Burke sure doesn't like to miss a thing these days...I think he's actually learning to enjoy life and relax a bit now. Of course we are still exhausted as he eats every 2 hours all night long but we're so thankful he's eating so well and celebrate with each empty bottle. Praise God for His faithfulness and good work in healing our little guy...please pray as we continue to trust that He will complete the good work He has started in Burke and in our family!

Monday, October 09, 2006

10-9-06 The Three Babysitters


Hello from Home! This is a picture of Uncle Nick, Auntie Jill and our very friendly kitty cat babysitting Burke while mommy took a shower (what a luxury)! Auntie Jill came to stay with us for a few days and helped out tremendously...she took over when I was too tired to function..THANK YOU JILLY! It's been pretty overwhelming to meet all of Burke's needs during the past few weeks. He's quite fussy and a bit unpredictable but we're beginning to figure him out (and he's figuring us out too). Burke has really proven to be a fantastic eater and is gaining weight steadily. We rarley need to use his G-tube for feeding as he takes almost 100% of his feeding by mouth (a huge difference from one month ago). He was up to 8# 6oz last Tuesday and will be weighed again tomorrow at his pediatric appointment.

On another note, we recieved confirmation that Burke has hearing loss in both ears (one ear has progressively been getting worse and they believe this is due to receiving high doses of ototoxic antibiotics). His hearing loss will require intervention (hearing aids/cochlear implants). This has been a devastating diagnosis and we are really struggling with the implications this will have for Burke's development and future interactions with others. We are really praying that his hearing will be restored but if not, that we will be able to cope with this new diagnosis and all that it entails. What a road this has been...still on the journey of many unknowns...but we have hope that Burke's life will enrich us all and teach us how to love and life in a much deeper and more meaningful way.

Saturday, September 30, 2006

9-30-06 Burke chills with his nina & babba!

Hello from HOME! Burke is doing fine...eating like a big boy and growing tons. In this picture he's sacked out in his Nina's arms (Chris's mom) after gobbling down a whole 40cc of breastmilk...it's about the only things that gets him to stop crying! :) We've all been a bit frazzled trying to get into a routine here at home but it's getting better day by day. It seems that Burke has his extremes down pat...he sleeps harder, cries harder and plays longer than he did in the hospital so I guess that means he's getting stronger by the day! He had his first pediatric appointment on Thursday and had gained one ounce in a day so that makes him 8# 1 oz now! My mom has been here to help us get organized and soothe and hold Burke so I can do the basic things like use the bathroom/etc. It's also been great to have her help with helping us give Burke his medications and do his wound care. She's also helped us get Burke on a schedule of eating and napping....thank God for grandma's who know about babies! :) We couldn't have made it through this transition so easily without her support! Nate's family came to celebrate Burke's homecoming this weekend and brought tons of food, love and hands to help and hold Burke. Auntie Jill was able to meet Burke for the first time too! This coming week we have 5 appointments to check on Burke's weight gain, hearing tests, wound and g-tube site and occupational therapy....we're also doing this without the help of Nina so it should be interesting! Please pray that we make it through the busy week and stay positive through Burke's ups and downs during the day!

Tuesday, September 26, 2006

9-26-06 We're Going HOME!

YES, it's official!...we're GOIN HOME! OH MY! In exactly three months Burke has managed three major surgeries, two major procedures,3 nosocomial (hospital acquired) infections, two rounds in the NICU, a million x-rays and florostudies, rounds and rounds of expert opinions and even more trials of ways to feed and gain weight.

As of today, Burke has doubled his weight to 8 lbs and is taking in the appropriate amount of milk by a bottle (binky trainer good bye!)! His esophagus and stomach are slowly but surely starting to coordinate themselves appropriately and Burke is now HUNGRY when his tummy is empty and HAPPY when his tummy is full of mommy's milk! We've managed to convince Children's Hospital Surgical Team, Dieticians, Residents and Feeding therapists that premies with surgical complicaton CAN grow and gain weight on breastmilk alone through a process called Lactoengineering...I've even been asked to publish an article for the Journal of Human Lactation about our experience and the methods we've used to help Burke gain weight! I can't even explain in words the overwhelming feelings of joy and fear that I have at this moment. I am assured that the timing is in God's hands and is always perfect. I know that we will meet new challenges in our home environment but strongly believe we're stepping forward on the path to a healthy recovery for our little family.

Monday, September 25, 2006

"Nothing Short of a Miracle"

Lets call it, “A Miracle from God”, or the intentional interaction of our Intelligent Designer, or maybe we can call it a theological master piece invented and designed by Jesus Christ himself. Interestingly enough the ministry of Jesus started with the controversial miracle of turning water used for ceremonial cleansing into wine for a Jewish wedding. In a sense I have always wondered what the formula was for Jesus' miracles. While making observations as I journeyed through the gospels a common principle came up over and over again. For example, do you remember the story of when Jesus fed five thousand people? What did he start with? A few fishes and some bread right? What about when Jesus healed the blind man? He used dirt and spit right? What about when Jesus healed the women with the issue of blood? He used a simple touch. All these things seem to have one thing in common. When Jesus would perform a miracle he would ‘start with what he had’ in a sense he combined the natural and the supernatural. It was not like the miracles of Christ came from nothing…Jesus usually used what was around him to demonstrate the glory, love, and power of God.
With this in mind I have been thinking a lot about the miracle of Burkes' healing. My pragmatic side wants to divorce the sacred (supernatural) from the secular (natural) and say that it is simply science and technology that is helping Burke find health. However, to think in this linier way would be to see only one part of the picture. When I dig a little deeper (and think vertically) it is profound how God is doing something that is “Nothing Short of a Miracle”. God has not changed in his principle ways of working miracles. God seems to start with what he has. So what do I mean by this? I mean God is working his miracle (Baby Burke) through the doctors he created, through the technology he allowed them to thinking of, through the prayers of people who love Jesus, and through a mother (Chris) and father (Nate) he considers a significant part of the Family of God. Ok let me try to unpack this a little more. For instance I was with Chris this weekend and she (through the wisdom of God’s Spirit) has develop a high protein, high caloric formula from her breast milk that is all natural and is helping baby Burke to gain weight. What is the method to this marvel, “you start with what you have”! Isn’t it amazing that the supernatural is so simple and yet so profound! I think I always expected a miracle to be God doing something out of nothing like when he created this earth. But God also makes the supernatural out of the simple. He does the extraordinary out of the ordinary. This is the message of the Cross…it is God doing something awesome out of something as common as death and life. Who would think to save the world through the death, burial, and resurrection of Jesus? God would! With this in mind let us not miss the miracle of Burke and give glory to God for what he has done!

Love Uncle Tim

P.S. I saw Burke this weekend and he is doing awesome. When I walked into the hospital for the first time in almost two months I received a warm welcome smile from Burke when he heard my voice. I also was able to feed him from the bottle that he is now eating from and he napped peacefully in my arms. I feel very special getting to be apart of this miracle!

Wednesday, September 20, 2006

9-20-06 Quick Update on Burke's Progress



Well, we're slowly getting back on track with the eating and growing. Burke weighs 7# 13oz now! Burke started eating by mouth on Monday and has progressively been able to tolerate more each day. He is now eating 20cc of breastmilk every 3 hours then is on continuous feeding of milk through his new G-tube at night. He continues to receive some of his nutrition via IV until he can tolerate his full feeding into his stomach. Everything is still in the healing process so we're going pretty slow with things and find his balance. He is currently free from infection and no longer needing antibiotics. We continue to care for the wound on his abdomen that was a result of the perferation of his original G-tube...the wound is deep and yucky looking but healing well. Aside from feeding stuff, Burke has managed to sucessfully pull out every tube possible (IV's, PIC lines, G-tubes)...we think he's trying to tell us something like "hey guys, I don't need this stuff anymore...leave me alone and let me go home!" We continue to have hope that we'll be heading home within then next few weeks...yes, we've said this before but we're really hopefull this time! :)

Another exciting breakthrough is that we've been able to spearhead a new creative research project with feeding Burke high calorie breastmilk through a process called lactoengineering. Burke has some "digestive" issues with fortified breastmilk as the formula they use gives him major gas and blowouts (see July posing called Burke Blow outs)! Now we're using the fat from my breastmilk for fortifying so he can easily digest it without all the discomfort (for him and for dad)! We're super excited to pave the way for other premies and parents who may be in this situation with needing more calories for growth but not wanting to use formula to add them! Go Breastmilk...whoo hoo..it really is all babies need to grow!

Please keep us in our prayers as we push through this next week and plan to go home. Burke specfically needs prayers for his stomach and esophagus to continue to heal properly so he can get all of his nutrition by mouth. Please continue to pray that Burke stays free from infection while in the hospital!

Tuesday, September 19, 2006

Grandpa, Gary Wood and Baby Burke

Here is a wonderful picture of the loving Grandpa Gary Wood and his new grandson "Burke"! Gary was able to meet Burke for the first time two weeks ago and it was love at first sight. Grandpa Gary has been super supportive through this whole process letting Grandma Julie spend almost every weekend for the past three months, up in Seattle with Chris, Nate, and the Baby.

Love

Chris, Nate, and Burke

Friday, September 15, 2006

9-15-06 Rainbow Through the Rain

O Joy that seekest me through pain,
I cannot close my heart to thee
I trace the rainbow through the rain,
And feel the promise is not in vain
That morn shall tearless be

Burke continues to battle through with courage, strength and determination. He has improved each day and we hope next week brings reports of good news while he begins to eat again! Thank you for the food, visits, emails and love...we appreciate feeling so connected to you all through this time...you give us so much strength! Love to you all

Wednesday, September 13, 2006

"In the Arms of the Great"



Here is a beautiful picture of Great Grandpa Chester, Baby Burke, Grandma "Nina", and a very proud mother. I am sure Grandpa was telling Baby Burke a wonderful story with his deep, wise, and melodic voice. I remember being a small child tucked up along Grandpa’s side and the sweet aroma of his Old Spice after shave combined with his neatly pressed lamb’s wool sweaters were always a delight. So here is to generations of love, stories, memories, the wonderful gift of family, and all that is to come!

Monday, September 11, 2006

A Step Back

I just got off the phone with Chris this morning and have the latest update on baby Burke. Unfortunately we took a step backwards this weekend. Although we had the loving presence of Great Grandpa Chester and Grandpa Gary little Burke had a complication with his G tube. Chris describes the situation this way:
“It seems like every time we try to help Burke something goes wrong. If we just let him be a baby he would be ok.”
For example the doctors have prescribed enhancement additives to the breast milk which Baby Burke has been eating. The additives in turn have upset his very sensitive stomach and given him lots of gas. The intestinal gas causes Burke to cry and on Saturday his G tube became dislodged from these intense expressions of grief.
The G tube is an alternate feeding source that was surgically placed into Burke’s stomach on Tuesday. It looks much like a small plastic valve that you use to blow up a pool raft or float. Two days after surgery they began to feed Burke through the tube. However, because of major stomach irritation the G tube was dislocated which in return cause leaking. The leaking of breast milk into the interspatial tissues between his stomach and abdomen has caused infection and required and emergency surgery on Saturday/Sunday.
Currently Burke will not be able to feed with out the aid of a pick-line for about a week or until the abdominal wound is healed (open wound). On the phone Chris described the scenario:
“Tim, it feels like we go from one extreme to the other. From being completely unhooked from any machine and ready to go home, back to complete dependency upon the hospital for at least another week.”
I know Chris is tired and honestly living on a thread. She, Nate, and Burke covet your prayers and support. I think to keep it simple…if we could all pray:
“Father we are ready for Chris, Nate, and Burke all to go home back to there little apartment... Thank you for how far you have brought them even though we still have a long ways to go. Please bring comfort to Chris, Nate, and Burke through this and help them to feel your presence and hope in the fact that you know best and you never make mistakes! WE LOVE YOU LORD…AMEN”

Love Chris, Nate, and Burke

Tuesday, September 05, 2006

9-5-06 The Three Little Bears!



So sorry about the lack of recent blog updates from us! We have been keeping busy with a more normal baby routine of feeding on a 3 hr schedule with diaper changes and crying in between...hope all you faithful blog readers weren't too worried about us! So, we remain at Children's hospital in what I like to call my "mamma bear den" where I've established a daily routine of caring for our little cub and fighting off any threatening medical people who come with needles/probes/tubes/etc! (it's a tough job but someone's gotta do it!) Burke's been doing so well that we were able to take him out of the hospital on a two hour "pass"! We strapped him into his sweet new stroller and took him to the casa where we introduced him to his big sister "mamma kitty" who unlike the rest of us, is not so anxiously awaiting his arrival on her territory! Burke slept through it all until we made it all the way to UVillage Jamba Juice and he decided to cry...uh oh...what does a new parent do in public with a screaming baby (with a tube to add?). Well, we picked him up and carried him in our arms for a while until the screaming stopped then realized it was all due to him being too warm...so simple, yet so complex! It was super fun to be "normal" for the first time since his arrival 10 weeks ago...wow...it's amazing how the little things mean so much more when we have to wait patiently for them to be realized!

Tube updated: Today Burke had a surgical procedure to place a gastric tube (G-Tube) directly into his stomach for feeding. The current NG tube will be removed from his nose in a few days. We all agree that the NG tube is causing much irritation and slowing down his progress with oral feeding. The G-tube will be a direct entry into his stomach bypassing the fragile tissues in his nose/throat/esophagus. Burke will need support in feeding for the next few months while he continues to advance on his oral feeding...soon he will be able to take 100% of his food by mouth (currently he's only taking about 10%).

My (Chris's) mom is here for the week to help get the house ready for Burke to come home. We still aren't sure on an exact date but hope it will be within the next 7-10 days! Great Grandpa and Grandpa Gerry from California come this weekend for their first visit...we are super excited!

Much love to you all...

Nelsons 3

Wednesday, August 30, 2006

8-29-06 Cuddled up with Uncle D



Uncle Derek and Burke had some serious bonding time over the weekend...Burke had a great time playing and snuggling with Uncle D! As you can see in the sleepy picture, Burke was out for the count.

Monday, August 28, 2006

8-28-06 Perspective


There is such comfort and rest in the faithfulness of God and his vast love that is beyond all measure! Watch as His glory is revealed through Burke's life. We wait patiently for Him to fulfill his promise to restore us.

Tuesday, August 22, 2006

8-21-06 Binky Training 101


Just in case anyone was wondering what "binky training" is here's a picture for ya! In this pic Nate is feeding Burke a small amount of breastmilk through a tube attached to a pacifier. With each suck, Nate slowly & steadily pushes down on the syringe that contains the milk and it flows into the tube and out the end of the binky into Burke's mouth! This teaches Burke what it feels like to suck, swallow and breathe all at the same time! Both my boys are doing great...Nate is so patient with Burke and Burke is so patient with Nate...they make a great team! :)

Burke has been taking 10cc's (30 cc = 1oz) about twice a day and hasn't had any problems with aspirating or choking...we are super proud of him! In the next months, he'll continue to get a larger amount through his binky trainer and when he's ready, he'll graduate to a bottle. I've also started nursing him but we need lots more practice latching on and sucking. I'm very hopeful and know he'll get the hang of it!

Sunday, August 20, 2006

8-20-06 Surviving the Hospital



Well...we're still hanging in here at Children's and trucking along in the right direction (homeward bound). We're still just "talking" about going home so there are no official plans yet but we hope it will be sometime later this week. Burke's official due date is Aug 24th so we hope to be going home around then! In order to get there, Burke must gain weight steadily and have stable breathing. His weight gain has been slow but is on the rise and he weighs 6lbs as of yesterday! He continues to have 1 to 2 episodes of oxygen desaturations during the early morning hours which has been somewhat concerning as the doctors can't quite figure out why they're occuring. Burke hasn't been negatively affected by these episodes and doesn't require extra breathing support/oxygen which means his body is strong enough to recover nicely on his own. An expert plans to visit us tomorrow to help uncover the meaning behind these episodes and we pray she'll be able to tell us they're no big deal and we can go home!!! Burke is also being tested for respiratory viruses just in case these episodes might be related to possible development of a cold or infection. So far, he hasn't shown us any major signs of being sick (this would be a real bummer as it would keep him in the hospital longer).

Nate and I had a great weekend with family and friends who came to help us while we continue to get ready at home for Burke's official arrival! Nate and I had our first date night on Friday thanks to Jeremy & Larissa's babysitting help. The Nelson clan came over Saturday for a visit and to celebrate Grandpa Gary's b-day with baby Burke. We were also able to get some sleep for a few hours at home while Elysia & Kelvie babysat on Sunday! It's been so wonderful to have the support here in the hospital so we can leave for a few hours here and there. We love spending all day with baby Burke but being in a hospital setting can be quite stressful day in and day out. Just getting fresh air and sunshine is a real treat these days.

Please continue to keep us in your prayers as we anticipate another exciting but challenging transition to going home. Nate will also be starting his new job the first week of September so we have lots going on that may cause extra stress in our lives both with time management and finances...we trust that this new chapter will be full of hope, joy and peace as we trust God to provide in all ways (as He already has!)

Love to you all...and thank you for keeping up with the blog...we LOVE getting your encouraging messages!

Tuesday, August 15, 2006

8-15-06 Surrounded by friends!



Burke has been doing really well this past week! As you can see, he enjoy's hangin out with his little buddies & sucking on his beloved binky. He's becoming much more interactive now...it's so much fun to watch him experience the world around him. His old roomate and buddy Logan & his mom stopped by to visit. Logan is just 8 months old and has been at Children's for cancer treatment (which is going well). As you can see, Logan really wanted to get into Burke's crib and play....it was sooo cute! Unfortunatley (for Logan) we had to postpone his playdate until Burke gets a bit bigger.

As for Burke's medical progress...he continues to wax & wane with weight gain and is now receiving a high calorie formula (30 K/cals) added to my breast milk to help him along. As of tonight he weighs 5# 12oz which is about where we started last week so he's starting to make up the few ounces he's lost! He is now taking 6ml of breastmilk by mouth during his binky training sessions twice a day and LOVES it! Wow, it's so encouraging to see him actually suck and swallow milk! As soon as he can tolerate 10ml twice a day we plan to try putting him to breast to see how he does...exciting progress :)!

He had his hearing screened today but didn't pass the screening in his right ear. The audiologist thinks the background noise may have interfered with the test so will repeat it next month. She counseled us on the fact that Burke is at higher risk of hearing loss due to his prematurity and the fact that he received certain antibiotics that are ototoxic (cause hearing loss) ...we won't know if this is true until they can re-test him next month. She did reassure us that even though the test wasn't "passed" today it did show that he is able to hear at most frequencies (phew) so can respond to our voices and sounds around him.

Please please continue to pray for Burke's steady weight gain, ability to tolerate taking in milk by mouth directly into his tummy and the subsequent testing (hearing, etc) that are still pending. The battle we fight daily is to not be anxious about the unknown but to just take one day at a time and rejoice in the life and love that we have for that day!

Wednesday, August 09, 2006

8-9-06 Growing stronger!

Burke remains in good spirits as he continues to work on growing and gaining weight! :) Over the past few days he's lost about 4 ounces but nothing too alarming or unusual. Because of this, we are now adding more calories to his milk to help "beef him up" a little more! The doctors would like to see him gain weight steadily before he can go home. They've also suggested to us that he likely will go home on tube feedings. How this works is Burke will continuously receive milk through a syringe pump hooked up to his tube. Basically milk drips into his intestines 24/7 which helps prevent the dreaded "reflux" that causes the errosion and stricturing of his delicate esophagus. At this point, Burke doesn't necessarily feel "full" or "hungry" but is satiated. Once he tolerates these feedings (and the reflux) well, he will begin to get milk directly into his tummy through the tube feedings and swallowing it down via breast or bottle feeds. We have no idea what the timeline for this will be...it all depends on how Burke is able to adjust to these new changes. Nate and I have learned how to set up his tube feedings and give his medication...Nate actually taught me how to do it all...he is a pro! All in all, we've made teriffic progress! Just think, a little over one week ago he was on CPAP for respiratory support...this little man amazes us each day...we are so totally proud to be his parents!

Many thanks to those bringing the yummy food to help Nate and I stay strong too...we appreciate you all so much! :)

Monday, August 07, 2006

8-7-06 The Burke BLOW OUT!




Oh yes, what you see is poop on Nate's shirt (at 2am) after a major explosion took place during "daddy's turn" at diaper changing! The nurses all agree that Burke has officially set the hospital record for biggest poop blow out of all time...his excrement shot 72 inches (yes we really measured) from his rear end, through daddy's shirt and over to the bed where I was sleeping! Incredible for such a little squirt! hehe! Fortunatley, I was spared from the mess but Nate had to spend the rest of the night in a hospital gown and pants. Thanks Burke for holding strong to the "Burke" family tradition...you've definitally proven yourself and you're uncles will be so proud :)

8-6-06 A weekend with Uncle Dave & Auntie Shel


We had a great weekend with Dave & Shelly (Chris's brother & sis in law from Redmond, OR)! Burke was very content in their arms...we are convinced that the love surrounding him has a tremendous healing power! Thank you Dave & Shelly for spending the weekend with us!

Saturday, August 05, 2006

8-5-06 We've Moved!

Burke is doing well...so well that the doctors agreed he is stable enough to be on the "big boy" floor with the other big kids! So this means we are no longer in the NICU but residing on the medical/surgical floor (Giraffe 3) in room 3018 bed 1. Burke is up to full feeds on moms milk and is no longer getting supplemental IV fluids! He is tolerating everything well so far...we are one big step closer to home (we pray)! Uncle Dave and Auntie Shelly are here this weekend from Redmond Oregon...they have already been such a help! Burke loves to look at Auntie Shelly...I think he might have a crush! :) We'll post a picture soon. Happy Seafair weekend to all you Seattlelites!

Friday, August 04, 2006

8-3-06 Cuddle bug


Our precious baby just gets cuter everyday! He loves to be cuddled in his blanket and snuggled in our arms! Today he discovered his little hands...aren't they so cute all folded up!

8-3-06 Sweet times with Nelson Grandparents
















It was a great day today! Burke is feeling much better and so are we! Rosie and Gary came to help out and do some holding while mommy went to shopping for baby stuff at target! :) Burke LOVED all of the attention today (needless to say). It was especially wonderful for G-pa & G-ma Nelson to spend time cuddling their first grandchild!

Burke's made terrific progress this week and we expect him to be moving out of the NICU to the regular medical/surgical floor within the next few days. This means he's more medically stable now! He had his first taste of mom's breastmilk during his first "binky training" session. The occupational therapist said he did a great job of sucking and swallowing his first few drops of milk...he earned an A+! He continues to get more milk through his ND tube (nose to duodenum or upper intestine) and is gaining weight well! So, for the next few weeks we'll be working on feeding/swallowing and trying to control the reflux so his esophagus can continue to heal.

Also we'd like to thank all of our friends and co-workers for the fabulous food...you guys are awesome!

Wednesday, August 02, 2006

A Dad with Heart

Baby Burke is a lot like is dad already. When Burke was born my brother David nicknamed him 'Lion-Heart' during a prayer service. The character quality of having a great heart has been evident in both baby Burke and his Father Nate. Through out this time a lot of the focus has been on Chris and the Baby (understandably so). However, behind the scenes is a loving, compassionate, and supportive husband. Nate has been a pillar through this struggle for Burke’s life and a true hero. I have seen him love and care for my sister in ways I never thought possible. He has been positive, optimistic, and his faith is leading their marriage and the quest to see their boy restored to full health. I thank God that he gave my sister such a wonderful husband who has risen above the challenge by waiting upon the Lord (Isa. 40:31).

I talked to grandma today and she said the pneumonia is clearing in baby Burke’s lung and he is experiencing progress at this time. Thanks for your continual prayers!

Love

Nate, Chris, Burke, and Family

Monday, July 31, 2006

7-31-06 Special day

Papa Tom and baby Burke had their first bonding moment today...it was an intensely beautiful experience for them both. Burke slept peacefully in his arms while his respiratory rate and oxygen was the best it's been in days! Burke continues to improve but still needs support for breathing...we hope he'll be off the CPAP machine in a few days. Burke is now getting breastmilk again...not much but it will increase slowly over the days to come.

Remodeling, Baby's and Kitchens...

As you may have heard there are all kinds of repairs going on during this time of life. The doctors are repairing and remodeling some of baby Burke’s plumbing while Dad, Nate, Gary, and I are remodeling and fixing the plumbing in Chris’s kitchen. It is a lot like the Burke/Nelson family to have many things going on at once, but I think this takes the cake.
In spite of all the remodeling that is taking place, our family has had wonderful times of worship and prayer. Within the last two days we have been on our knees before the throne of grace as a family pleading with the Lord. We have been by Burke’s bed side laying hands on him and praying for him. We have stood in circles holding hands and praying together. But, my favorite was Saturday night when the Spirit of God prompted us to give thanks. It seems like we spend so much time asking God to help us, we rarely direct a whole prayer time to giving thanks for what he has done. As a family we have been so please and so blessed with how God has graciously preserved and strengthened the life of our Baby Burke. It is a miracle that we have made it this far and we know God will do things above and beyond what we could ever ask or imagine. (Do you know why? Because it’s all about His glory not ours!)

Yesterday the nurse showed us some x-rays of Burke’s lungs. One lung is much bigger then the other because of his pneumonia and we must pray that the infection clears out a.s.a.p. so he can be restored to full health. There are two things that happen when a lung collapses, first it puts and extreme amount of pressure on the good lung to provide the oxygen needed for the body. Second the over inflated lung pushes the heart out of place. In Burke’s case the lung is starting to clear, but we must pray that no other organs are over stressed because of this complication. Otherwise, his blood saturation levels have improved and he seems to be resting.

Thanks for all your support.

We love you!

Chris, Nate and Family

Saturday, July 29, 2006

7/29/06 Hope

This is mom writing today...I'd like to say that Uncle Tim has been such a wonderful help in keeping us coordinated with family & friends and of course updating the daily blog! Nate and I have so appreciated all of your help this past week...the good food, stoping by to see us, cleaning & working around our house and praying forus has really meant so much. Thank you for the encouraging emails and voicemails too...we love it!! Please know that if we haven't responded it's not because we haven't received your messages but is because we just don't have much time outside of being with baby Burke or sleeping. We cherish hearing from you, even if it's just a "hello and thinking about you today" message.

Baby Burke's had a rough time over the past 2 days. Today he struggled to breathe so much that the doctors ordered more testing and discovered that he has a partially collapsed right lung. The cause is still unknown but they suspect either a plugged or weakend bronchial tube (airway to the lung). His lab tests showed that he has an infection in his lung which is likely to be pneumonia. He's now on more antibiotics and breathing support called CPAP with helps him get more oxygen to the areas that are collapsed. Burke has really amazed us today! He is handling this set back well despite the odds. Even with only one fully functioning lung he's breathing well and improving slowly. We are hopeful that with antibiotics and CPAP he'll feel better and the lung will reinflate over the next few days. Unfortunatley this pushes back the date when we'll start feeding him breastmilk again...hopefully he'll recover quickly and he'll start getting the good stuff soon! Oh yeah...he's gained weight through it all! He's now 5# 10oz...getting to be a big boy already!

On the home front: Nate and I are trying to get some sleep. Nate's been busy with work this week and a training this weekend. Tim and dad are working on the kitchen remodel...tiling and installing a new sink and appliances. Rosie and Gary were here this weekend and brought lots of food and spent some quality grandpa/grandma time with baby.

We're gonna make it one day at a time and couldn't do it without you all behind us.

Friday, July 28, 2006

What a Beautiful Mom and Baby

Baby Burke, Chris, and Nate have had a pretty good week. Yesterday the doctors dilate Burke's Esophagus and things went very well. After the procedure they where able to take out the NG tube and allow the baby to swallow on his own.

The not so good news came this morning when my mom called me and told me the baby was having complications after yesterdays procedure. Because they enlarged the babies Esophagus stomach juices have been giving him bad indigestion. This has effected Burkes breathing and we seem to be right back where we started. As of this morning his respiratory rate has weakened and the doctor have had to give him oxygen. When I got off the phone with my mom they where taking Burke back in for another examination.

My dad and I will be working on the kitchen this weekend and hope to get everything in order fo Chris, Nate, and Burke. Thanks for your prayers when I have more info I will let you know.

love Tim

Wednesday, July 26, 2006

Grandma and Baby


I wanted to thank everyone for their gracious responses in the last couple of days. Chris and Nate’s community group from Marrs Hill Church brought food for the next couple of days and cleaned the apartment from head to toe (thank-you)! They probably have enough food to last them until the weekend. Chris and Nate wend on a picnic to the park thanks to other thoughtful friends (thank-you). You all have been so wonderful and I find it my opportunity to help coordinate things during this time so if you have a special way that you would like to minister to Chris and Nate please give me a call (503-961-3273) ask for Tim.

Some have asked me how they can come and see the baby. I would suggest giving Chris a call, but much of the time she is in the NICU with the baby and can not have her cell phone on. So, here is a good game plan if you would like to come by and hold the baby. First call, if she does not answer, then you can stop by the house and see if she is home (if you need directions call me (503-961-3273 or email me: timburculosis@aol.com). The nice thing about stopping by the house is that it’s a 3 minute walk to the hospital. The path to the hospital is just up the hill (on 45th) from their condo and to the left! So if she is not home please feel free to head over to Children’s Hospital and ask directions to the NICU. If she is there they will buzz her and you can go in and see baby Burke. One last thought if you want you can call me and I may be able to tell you her location.

Today the doctors did a little work on baby Burke. They tried to dilate the esophagus, but where not able to because the opening is too tight. This means tomorrow they will use a little different procedure to get the job done. They also did a bronchial study and found that the baby has a small amount of Tracheal Malaysia (not sure on the spelling), but that means that trachea is a little soft, but not collapsing completely. They also drew blood today for the genetic testing and where able to get everything that they needed. Grandma said that the baby looks good today and is napping. Chris is also napping on the couch and is feeling a little groggy from some sleep aid that she took last night. Thanks for your prayers and support. Here is a verse that has been encouraging me about the ‘ministry of presence’; it deals with how Job’s friends ministered to him during his trials: Job 2:13 13 Then they sat on the ground with him for seven days and seven nights. No one said a word to him, because they saw how great his suffering was.

Tuesday, July 25, 2006

Chris, Grandma, and Baby Burke


Baby Burke has made some good progress in the last couple of days. The doctors and nurses decided to move his NG tube to the middle of his esophagus where they performed surgery three weeks ago. I was really proud of Chris during this time because she was one of the main proponents who suggested the repositioning of the NG tube. This has allowed the baby to swallow much easier and kept saliva from pooling in his throat. Her nursing skills and intuition have really helped baby Burke through this ruff start. I know that the good Lord allowed Chris to be a nurse so she could have the kind of wisdom needed to help her child through his early stages. We are so thankful as a family that God has been so faithful to us and that all of you who love our family are praying and ministering to us. I ask that you would continue in our commitment to help us through this marathon.
Currently my concern is more for Chris and Nate then it is for baby Burke. He is actually doing much better, but Chris is struggling. We are all aware of the fact that this week they are doing genetic testing on baby Burke. This is a very frightening thing for our young mother who wants her baby to be ok. My sister has been on the internet doing a lot of research and some of the conclusion have left her with negative outcomes. However, the geneticist came in yesterday and where not to overly concerned by what they saw, but will do a little more investigating. I would like to ask you to pray specifically that baby Burke would be ok genetically! I would like to ask for anywisdom you can give Chris and Nate in the area that God is supernatural and we cannot limit him soly to the pragmatic results of our research! We must trust that God will and can do things exceedingly abundantly above what we can ask or imagine! I would also like you to pray for Chris and Nates marriage. These times are tough and they need prayer support and people to ask them how their marriage is going!

In conclusion, my mom will be with Chris the rest of this week and then my dad and I will be returning to work on Chris's kitchen, Friday 5:30pm through Sunday. We are doing some remodeling in the kitchen and trying to get that all fixed up for Chris. If any of our supporters would like to help us finish remodeling the kitchen this weekend we would welcome your knowledge and support. I know we will be installing appliances, tiles, countertops, and cabinets. If you have any skills in this area and would like to help please call my dad or I. Here are our #'s 503-961-3273 ask for Tim; 509-930-7074 ask for Tom.

"Many hands make light work"

Love in Christ Uncle Tim

Sunday, July 23, 2006

Uncle Tim and Baby Burke



I had the opportunity to hold my precious little nephew yesterday for about three hours. Baby Burke slept in my arms as I sang him songs and talked to him about all the things I am looking forward to doing with him when He gets a little older. I know he will be a good soccer player and a true fly fisherman.

If I could help to discribe this sweet little boy, he is warm, he smells good like a baby, he has a cute little snore, he has a handsome face and big beautiful eyes. He is a great cuttle bug and loves to be held. Some people have asked what they can do and I would suggest that you call my sister (or just come to Childrens hospital) and spend time holding this precious little bundle of joy. Chris needs other people to cherish her baby along with her during these hard times.

We had a big scare on Thursday night when they had to call a code on baby Burke about 4am because his blood oxygen level was not doing so well. Chris was in the room with him when this happened and it really frightened her. Baby Burke was in a regular hospital room but has been returned to the NICU for more intensive care. Monday is a big day for baby Burke. He is having a bronchoscopy and a genetic evaluation. So please be praying that is bronchual tub is in good order and that genetically he is ok. Since they moved baby Burke to Childrens hospital they are being a little bit more thourgh.

People often ask what they can do for Chris and Nate and I would like to suggest that if you ask them they probably will not say much at this time. I think since this week has been so tough they are both suffering from shock. What they really need is for people to bring meals over every evening. They need people to stop by in the evenings after work and pray for them and comfort them (just 30 minutes of your day). They need people to stop by Childrens hospital when they are there and offer to hold the baby for a while. They need people to help clean their little apartment. They need people to help them get out of the house. What they really need is for the body of Christ to follow the leading of the Holy Spirit! If you believe the Holy Spirit is prompting you to minister to Chris and Nate in some way please act upon that! They need comfort and support! I know as the big brother at times it does not feel like you can do anything to fix the problem and believe me we would all like to fix it. However, this is not about fixing this is about being. This is about being here for Chris, Nate and Burke. This is about comforting and praying!

To be honest with you they are both suffering from depression. This time is taxing on their marriage, bodies, emotions...you name it. They are having a hard time sleeping, eating...etc.

I wanted to thank everyone for their prayers and for enduring this marathon with us! Please continue to battle in prayer and provide comfort by coming over. Phone calls really are not what they need at this time. They need to be huged, spoken to in person, and cherished(true incarnational ministry)!

If you need directions to the house please call me (503) 961-3273

with all that I am in Christ

Tim

Thursday, July 20, 2006

7-19-06 Children's Hospital

We're sorry for being so out of touch. The last week has been a whirlwind for us. We transferred to Children's Hospital Monday and have been getting adjusted to the very new environment here. Burke is in a regular hospital room which he shares with a roomate. We (along with the nurses) are his caregivers 24 hrs/day...this is much different that the NICU environment where we could leave him with his nurse and go out to do things like sleep/eat/etc. Nate and I are now taking shifts around the clock and thankfully we are less than a 5 min walk to our condo so can go home to sleep. There have been many doctors, specialists, consultants and teams of people in and out to see us. They come in and out all day and it's a bit overwhelming! They are re-doing many of the tests that were already completed in Tacoma just to be "sure" that things are still ok. Burke had a rough last few days and they have stopped his feedings of breastmilk until they recheck his esophagus and make sure it's still not leaking. He had extra secretions in his nose and mouth and started spitting up more. He also had episodes where his heart beat went too low and his oxygen saturation decreased where we need to stimulate him and put oxygen near his face to get him to breathe. He bounces right but but it's incredibley scary and intense for us to see our litte guy go through this. Needless to say that with everything going on, we are a bit on edge and in need of much prayer for strength, endurance and peace.

The new doctors have told us that Burke will need a lot of time to start eating normally. It'll be up to him to tell us how much time he needs so we may be in the hospital another month or so. Nate starts work again next week so this may pose another logistial challenge. I thankfully am off work until December so can be here to care for him. We appreciate your outpouring of support and offers to help. If you would like to visit us, please call the hospital directly 206-987-2000. Currently we're in room G-4018 bed 2. Here is the website to the hosptial http://www.seattlechildrens.org

Saturday, July 15, 2006

7-15-06 I'm so cute


It was another good day today. Burke rested peacefully and continues to breathe well...so well that they discontinued the oxygen that was being given through his nasal canula (yay..one more tube gone). He's also in the process of being weaned from the morphine...it's a slow process but the doctors have reassured us this is very common and the babies do just fine without any long term side effects! We are super proud of his progress. Monday he will be transfered to Children's Hospital...we are very excited to be closer to home. Please continue to pray that the transfer goes well and that he responds well to being weaned off the morphine. Thanks...we appreciate you all so much!

Friday, July 14, 2006

7/14/06 I love my morphine (a little too much)


Uh oh...baby Burke now clearing his next hurdle... morphine withdrawls! For the past 2 weeks he's been getting small amounts of morphine for pain control and today, we discovered that if he doesn't get it for long periods of time, he gets a little bit fussy! He is doing fine (no worries) but his body will need to be slowly weaned from the morphine over the next few days. Overall he had a great day though. I held him for almost 2 hrs...he slept for the first hour and then woke up and gazed at me while sucking away on his little binky...soooo cute! He changes so much everyday...I'm always so encouraged by how much stronger (and more handsome) he seems as each day goes by. His lungs, heart and esophagus are all working well. He's almost off the oxygen completely (they'll remove the nasal canula from his nose soon!) The surgeon reassured us again that his esophagus is healing much better than she expected..wow...praise God for his healing hand on our son! They've increased his feedings to 5ml/hr through his nasal gastric (NG) tube. He weighed 4# 13oz today! At some point within the next few weeks we'll teach him how to suck and swallow so he'll be able to eat more normally.

Within the next few days we hope he'll be transferred to Children's hospital where we'll be in walking distance from our condo. It will be so nice to have him closer to home although I must say that (as weird as it may sound) I will miss this place....the nurses and doctors have been amazing and we love them!

I read a great verse today that has encouraged me so much that I wanted to be sure and share it! We wait in hope for the Lord; he is our help and our shield. In him our hearts rejoice, for we trust in his holy name. May your unfailing love rest upon us, O Lord, as we put our hope in you. Psalm 33:20-22

Thursday, July 13, 2006

7/13/06 Daddy's little gift...


Another great day today! Daddy got to hold Burke for the first time and it was beautiful! Nate did a great job of holding, rocking and singing every song he knows...his favorite is "you are my sunshine". The nurses even love it when Nate sings to baby! Burke slept comfortably in daddy's arms for over an hour! Burke is feeling good today and sucking even more vigorously on his binky. He had two big poops and is getting more breastmilk now (2mls/hr). The doctors and nurses are working on getting him transfered up to Children's hospital maybe as soon as tomorrow! Wow...when our little guy makes progress he sure knows how to step it up! We are so proud of him.

7/12/06 Holding Burke for the first time...


YES!!!! As the neonatologist expressed the news to Chris that she could hold her presious baby for the first time, the look on her face said it all. Now that Burke had a day of breathing on his own and the chest tube was removed, the doctors and nurses felt that Burke was strong enough and ready to be held. We have waited for this moment since June 26 at 3:21 pm. Burke took well to the holding and laid comfortablly on Chris's chest and drooled a little on her shirt. Did this bother Chris, oh no, this was just fine for Chris. This may have been the most content I've seen Chris and baby Burke since this whole ordeal started! Progress continues to keep steady with Burke including his feedings which he is receiving mom's milk at 1 ml an hour. This will increase daily as Burke takes well to the milk. The plan with the feedings is that Burke will go up to 11 ml and not require his IV anymore. He'll need the oxygen in his nose for a little while longer. He's been sucking strong on his binky which shows us that he's very capable of feeding and swallowing...
Lots of praises today...we are so encouraged!