Monday, July 31, 2006
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
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
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.
Wednesday, July 26, 2006
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: firstname.lastname@example.org). 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
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
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
Thursday, July 20, 2006
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
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
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
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.
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!
Tuesday, July 11, 2006
Baby Burke has had some very exciting and positive happenings over the past 2 days! On Moday the 10th, he had his esophogram. A radiologist put a dye contrast down his esophagus to test for any leaks in the repair that the surgeon did 2 weeks ago. Nate and I anxiously watched the procedure (it was intense...we think Burke handled it better than we did)! We received the great news that his esophagus has healed well and is not leaking fluid out into his lungs or abdomen!! The esophagus remains small so there is some pooling of fluid that causes him to gag a bit but the surgeon seems to think this will go away with time. Since then, his chest tube was removed and he was weaned completely off the ventilator! He is such a trooper! He is now breathing well on his own without support (he just gets a little oxygen (the concentration of room air) through a nasal canula in his nose)! He looks much better without all that sticky tape on his face! He has a NG tube (feeding tube) that goes from his nose to his tummy. He started getting more of my breastmilk today through the tube so this will help him get stronger. He is already very fiesty and tried to literally stand up in his crib today when he got upset...I didn't think a 33 wk old baby could be so strong! He has a sweet little cry...it's a bit hoarse from the ventilator tube being near his vocal cords but it is the sweetest sound we've ever heard....we LOVE to hear our baby boy cry! :) Now that we can see his face a little better, we've decided he looks even more like his daddy and even has his handsome dimples!
Nate and I are back in the parent apartments here in Tacoma until Saturday. The doctors are already discussing the option of moving Burke to Children's Hospital in Seattle sometime soon (this could be days to weeks as "time" has it's own meaning here in the NICU). We are thankful to be so close now that Burke is more awake and active....we hope to be able to hold him tomorrow if all goes well!
Please continue to pray that he gets stronger and that his breathing is maintained without the need for more support. Praise that his esophagus is healing and that he started feeding today. Our little boy is such a miracle!
Thank you for your support and love....we are so grateful! Lots to come in the next few days...we'll keep you posted!
Sunday, July 09, 2006
Saturday, July 08, 2006
Lots of progress over the past 2 days! Baby Burke is now getting my breastmilk through a feeding tube placed in his nose and is tolerating it well (he's never had anything in his tummy until now!). Prior to this he's been fed via an IV directly into his veins but now he's able to get a good dose of mommy's "medicine". He had a big poop this morning...we are thrilled about poopy diapers (never thought I'd say that!). They are weaning him off the ventilator and he is breathing more on his own. They say that he should be completely off the ventilator by Sunday night. Monday he will have a esophogram which will evaluate the surgical repair to his esophagus and detect any leaks or problems. Burke is trying so hard to wake up now...he opened one eye and looked at us yesterday! So cute! He moves his hands and legs and acts like he's trying to cry...this is good as it shows us signs that he's waking up and acting more like a healthy baby! Yesterday we got to see his little face without all that tape around his mouth...he looks JUST like his daddy! :) ...please continue to pray that his lungs work well without support, his esophogram is normal and that he stays infection free! We appreciate you all so much.
Thursday, July 06, 2006
Isn't he cute! :) He looks like daddy but with darker hair! He's doing ok today (post heart surgery) but still needs help breathing as his medications for pain cause him to not take as many breaths on his own. We are very very proud of his strength and endurance for the past 10 days of his little life...what a fighter! Thanks for your continued prayers...we feel them!
Wednesday, July 05, 2006
Burke did well through his surgery today! Praise Praise!!! The cardiac surgeon closed the open vessel in his heart . This was a huge step for his baby steps toward improvement and healing! Post surgery he is sleeping soundly and comfortabley (with lots of meds on board). The nurse said his bloodwork and blood pressure are starting to look better already. In the next few days they will be weaning him off the ventilator and blood pressure medication. Hopefully by next week we'll start introducting fluids into his little tummy through the tube in his nose (NG tube).
We are doing ok...it was a long day at the hospital but we took a short nap this afternoon. We're about to head back to our little apartment down the street, make dinner and go to bed early. I think we'll both have a glass of wine to celebrate a good day! (yes, for all you breastfeeding folks, I'll "dump")! Thank you for your prayers today...we felt them and so did Burke.
Tuesday, July 04, 2006
For more photos you can check out Uncle Derek's photo page at: photos.yahoo.com/dnelson_1971
On Wednesday 7/5/06 Burke will under go his second surgery of life. Before birth, there is a natural opening between the aorta (the main artery to the body) and the pulmonary artery (the main artery to the lungs) called the ductus arteriosus. This opening usually closes shortly after birth. PDA occurs when this opening fails to close; PDA occurs in about 10% of infants.
PDA is often treated initially with a medication called indomethacin but Burke's PDA didn't close on its own or with indomethacin so surgery will be performed. A small incision is made on the left side of the chest. The ductus is either ligated (tied off) or cut.
We are hopeful that this surgery will go well and have been reassured that it is simple and quick. After this surgery, we look forward to Burke coming off the ventilator and his blood pressure stablizing without the need for medication. Please pray for a safe surgery & quick recovery!
Monday, July 03, 2006
He had surgery on Tuesday June 27 (less than 24 hrs old) to repair his esophagus. Praise God that his surgery went well and his body is healing. The nurses have been keeping him comfy with little does of morphine for pain so because of that, he doesn't move around much, cry or open his eyes yet.
We're able to talk to him, stroke his head and hands gently...he definitally knows when we're there at his bedside! We visit him at least 4 times a day where we read stories and sings songs to comfort him. We hope to get to hold him for the first time in the next few weeks...that will be a good day for mommy! :)
On Monday night we found out that Burke was born with a congenital anomaly involving his esphagus (swallowing tube) and trachea (breathing tube). This is called Tracheal Esophageal Fistula with Esophageal Atresia (see first picture in diagram to the right). There are a variety of different scenarios but fortunately Burke has the most common type which can be fixed with surgery (95% success rate)!
Basically this anomaly starts forming during the 4th - 8th week of his development. A part of his trachea and espophagus grew together to cause a fistula (connection). When these two tubes are connected it can cause fluid that from his stomach to back up into his lungs which could affect his ability to breathe and cause major infection. The other part of his esophagus (the top part) was not connected to the bottom half of the esophagus leaving a big space (called atresia). So bascially all the parts were there but not plumbed into the right places. This left Burke unable to swallow nutrients down to his stomach.
During his time inutero, Burke wasn't able to normally swallow and process the amniotic fluid through his stomach and intestines. This caused an imbalance between us so I began to retain extra amniotic fluid (called polyhydramnios). My body couldn't maintain all of this fluid so my membranes ruputured prematurely which sent me into premature labor. This condition is very difficult to diagnose and only happens in about 1:4,000 pregnancies. Sometimes infants with this condition also have other developmental anomalies but fortunatley Burke has been cleared of any other major concerns with his other organs. Also, this condition isn't genetic so we aren't concerned about it happening in subsequent pregnancies.
good website for more info: http://www.childrenshospital.org/az/Site2191/mainpageS2191P0.html