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'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 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.


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 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 simple, yet so complex! It was super fun to be "normal" for the first time since his arrival 10 weeks'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