"What would have become of me had I not believed that I would see the Lord's goodness in the land of the LIVING. Wait, hope for and EXPECT the Lord. Be strong and of good courage and may your heart (Ned) be sturdy and enduring.....Yes, Wait For and Hope For and Expect the Lord."

Psalm 27:13-14 (Amp)

Thursday, February 28, 2008

Lots of Prayers Needed!!!

Ned has been off of the vent for over 48 hours now which is great; however, his routine chest x-ray yesterday morning showed that his left lung (the small one) had collapsed a bit again. They decided to take him back off of the regular nasal cannula (oxygen only) and put him back on the CPAP (which supplies pressure and oxygen) to try to re-inflate the lung. If they can't get it re-inflated, they may have to put him back on the vent. The very good news is that he remained stable with the one good lung.....stats were great, but they just want the other lung working so he doesn't tire out too easily. This mornings x-ray didn't look any better- maybe a little worse, but because he is still stating well, they are going to give it some more time. Please pray that God will allow his little lung to open back up and funciton properly. He just has a more difficult time holding that lung open now that it has collapsed because there isn't a diaphram muscle on that side either? I am so praying that we don't have to go back on the vent, but, again, we'll just have to continue on this journey in whatever way or fashion God directs it.

It took exactly less that 24 hours to spoil my son.....honestly. I 'm not sure if there has ever been any research performed to determine such, but for Ned- 24 hours. After I held him most of the day yesterday, I stopped rocking to put him back in his crib around midnight and as soon as I stopped rocking, he started crying. I sat back down and rocked again- the crying immediately ceased! When I stopped rocking a second time- crying! Who can believe that he could have learned to enjoy something and cry for it so quickly? I am so thankful that he likes being rocked though. It gives me peace that I am now able to comfort him!

I appreciate everyone's continued prayers for litte Ned. His lungs are still small and currently compromised so he still needs those prayers for lung function and to prevent any infections from setting in. Your faithfulness to pray for my child is so greatly appreciate and has been a very humbling experience for me. God has been so faithful to answer those prayers in a very mighty and miraculous way. I find myself asking everyday, "Why Me God" and not in the way like why did you let this happen to our child. Now it's more like, why did you choose me for this experience? Why were we allowed to be the ones to have you work so miraculously in our lives? So many people go through life and never see God and know Him like we have been allowed to. I just wonder why we have been allowed to receive such blessings?

Love to you all!

Betsy, Travis, Jack & Ned

Wednesday, February 27, 2008

Breathing.....Oh Yeah!!

Well, they extubated Ned yesterday morning at 8:00am and transitioned him to the CPAP which still provides a good bit of pressure support. He did extremely well and Travis and I both got to hold him for about 30 minutes. It was wonderful!! I don't think we were the only ones that enjoyed it- Ned's oxygenation stats were the absolute best for the day when he was being snuggled- it warmed my heart. I thought, that's how it is when God holds us during our struggles. Ned's body wasn't in any better physical condition while we were holding him. His struggle to breathe remained, but he found rest, peace and comfort in arms. That's exactly what it's like to go through a deep valley with the Lord. The struggle is the same, but your response is supernaturally different.

Around 2:00pm, they transitioned him from the CPAP to the high-flow nasal cannula better known around the PICU as Vapotherm (it is absolutely necessary that you learn to speak in acronymns if you're going to survive conversationally in the PICU)!! So far, so good! Ned has been off the vent now for over 24 hours. The magic number is the 48 hour mark when they will pronounce this wean off the vent sucessful, so we'll keep the prayers coming at least till then....just to be safe!

Otherwise, I have little to share today. It seems like on days when Ned has great tasks before him, I completely exhaust myself encouraging and supporting him. Last night, I felt like I had run a marathon, but I actually just sat at his bedside all day? He is working his little body to death to learn to breathe, but for some reason I feel like I have had some major part in it, which I havent....sympathy pains, I guess?

Below are some pictures from our highly eventful day. He is looking great, although he got an old man hair-do during his bath on Monday night. I think the wild man hair-do suits him better!

Thank you and love and blessing to you all!

Betsy, Travis, Jack & Ned

Monday, February 25, 2008

On the Brink of the Home Stretch!!

The doctors performed a respiratory test on Ned this afternoon to get a better feel for how his lungs were progressing. I'm assuming they are feeling pretty good about his progress because they have scheduled a second attempt for extubation in the morning!!! My anxiety level is completely through the roof- I suppose it's because I know that this could really be it for us! If we can get Ned off the vent, we can soon move to the floor and start working on bottle feeding and getting him home! I have butterflies in my stomach like I'm gearing up for some big athletic competition or something. I don't think I'll be able to sleep tonight. Some of you better beware, I may be praying you out of your sleep again for extra assistance?

Ned is definitely ready for the vent tube to come out. He has been making extra-aggressive attempts to remove it himself all day! When I left, the nurses had "lovingly" pinned his arms to his bed sheets to prevent him from pulling the tube out himself. Ned didn't seem particularly thrilled with the new arrangement- He was extremely agitated and giving lots of the silent cries!

As I pulled out of the hospital, I let out some cries of my own...not all that silent though. As I prayed, I explained to God that it wasn't that I wasn't so very grateful and thankful for all He had done for and through my family and my son, it was just that my heart was broken to see him suffering so. If I could only bear his suffering myself, I would. The Lord showed me that in that same vein of love, he couldn't bear to watch his children suffer either, so He chose to take our suffering from us. His love for us makes so much more sense to me the more experiences I have as a parent. I realize that it would be easy to look at our situation now and think that we haven't been spared any suffering at all, in fact, quite the opposite, it may appear that God is heaping suffering on us? I have had times of real saddness and real fear, but I have never had moments of feeling lonely or abandoned or unloved by our Heavenly Father. In the darkest hours of my journey, I have always known that I have stood on the solid rock of Jesus and that though my path may seem uncertain, it would be lit by His glory and grace.

There are times when I post things here that I realize are difficult for some to grasp and digest. There are things that I post here that are difficult for me to say out loud (or virtually outloud as it would be). When I felt the Lord urging me to start sharing with others what He was doing in my life, that is why I resisted for so long. It was easy for me to share God's goodness in my Sunday School or Bible study groups, but not just with the general population. I'm certain that I appear to be a complete Jesus freak to some and all I can say is, I am. This is not a place I came to because I suddenly needed "religion" as I faced the uncertainty of a child with birth defects, this is a place to which I was brought because I sought to understand the Truth. All I want to say tonight is that all that I write about Jesus and how He sustains me is real. My attitude and ability to pleasantly endure hasn't been due to any of my own abilities....trust me! I have been slowing progressing to this point in my life where I could honestly share my feelings about my God outside of any religious atmosphere and the main thing I want to share is how very real it is because I never understood that.

I always prayed. Since I was saved at age 8, I prayed every night at bedtime. I gave God a complete list of everything I thought He should be taking care of that day, or at least in the near future. I never prayed for myself, that seemed selfish. It never crossed my mind to pray in a conversational tone. In my world, God's role was limited strictly to listening to my commands? How completely bizzarre does that sound? When I was in college, I believe it was my Sophmore year, I read a book. It wasn't a class assignment, just something I grabbed off the shelf at home on my way back to college one weekend- In His Steps by Charles Sheldon. That book changed my entire perception of how I should relate to God. In my bedroom, I got on my knees and prayed that God would begin to work in and through my life and that I might learn to listen to Him- a whole new concept for me!! My life began changing at that moment. It is certainly a never-ending progression, but I'm so thankful that it doesn't end, that there is no end to His goodness. It is in the infinite nature of God that I now find my fulfillment. Ten years ago, I would have kept a respectable distance from the person writing this blog. Now, I'm just confidently sharing what the Lord has done for me in hopes that others can find the peace and blessings I now know. Since I was 8, I would have said that I loved and believed in God. It has just been in more recent years that I can say, I know and trust Him.

Please continue to pray for Ned's extubation. All afternoon, I just prayed to God that the breath of the spirit of God that first gave him the ability to let out that cry at birth will give him an ability to steadily breathe tomorrow. That God will give his body the strength to support itself and that God will grant Ned a peaceful spirit during this adjustment. Thank you for all your prayers- from the bottom of my heart!!

Betsy, Travis, Jack & Ned

Sunday, February 24, 2008

After my weekend retreat home to spend time with the family, I returned to find Ned in a little onesie! It really isn't an indication of any particular progress; however, it just seemed so normal for my son to wear some clothes. He has been lying around in a diaper for a month so a shirt was just another tiny step in the direction of doing what other babies do....it was a beautiful site!

I stopped by to visit April and her husband Russell following their visit to CHOP last week. They received an almost identical prognosis to what we were told to expect with Ned. At this point, they are just trying to decide where to deliver and finding their comfort zone, or some semblance of it. I remember when Ned was first diagnosed and I kept telling God, "I know I'm going to have to put him in your hands, but I just need to exhaust all my resources first before I can let him go." All of that is just part of the process of faith.

I think most people think that faith is some spiritual sense that is miraculously allotted to some individuals more than others. Faith is basically nothing more than an intentional choice. There is nothing superhuman about it. Faith actually requires humans to be more submissive and obedient. Faith is built during hard times, struggles and difficulties when you choose to trust and follow Jesus in the midst of darkness. Although you can't see a light at the end of the tunnel and you aren't given any certainties regarding the outcome, you willingly relinquish your life into His hands. Such steps of faith are never easy, not for anyone. Hebrews 11:1 says: "NOW FAITH is the assurance (the confirmation, the title deed) of the things [we] hope for, being the proof of things [we] do not see and the conviction of their reality [faith perceiving as real fact what is not revealed to the senses]. "

There were days when I was pregnant with Ned that my faith was very weak and fragile. I was almost embarrassed that I couldn't hold on to the promises of God any better than I could. There were days when my faith was so weak that I was overcome by unspeakable thoughts all day. hHey were so intense and upsetting, I never mentioned it to anyone, not because I wanted to appear more faithful and self-righteous, but I just couldn't bring myself to life my thoughts into words. There were days on my way home from work, I would find myself consumed with the potential that Ned may not be able to survive. I gave thought to his funeral or graveside service, burial clothes, music, speakers, etc. I never even mentioned these things to Travis. Like I said, faith is a choice. It is actually a series of choices which lead you into a deeper relationship with the Father. I hope to be able to continue choosing to follow God and accept the blessings He has in store for me and my family. I was thinking about the Hebrews and how God had given saved them so many times, yet when they got to the edge of the promised land, they were too afraid of the giants to go in and claim it. I hope that with as many miracles as God has shown me and bestowed upon my family, I will always be able to trust Him and follow him!

When I was pregnant, there was a song that I would play for and sing to Ned almost every day. It is by Big Tent Revival (wouldn't that make a great t-shirt?) and it was called Choose Life. While I sang it to him, I meant for him to take it literally, but as for me, it is a choice I must make daily so that I can recieve the life He has in store for me, I want to choose to live in my promised land!

Choose Life, that you might live
The life that he gives, He gives you forever;
Choose life, for the way that is true
and the one who loves you, He loves you for ever;
Choose Life

We're still weaning off the vent slowly, but surely. Our two main, remaining prayer requests are breathing and eating. We need him to take about 12cc's per hour on the feeds before we can stop the TPN and of course we need him to be extubated and stable. Please keep these two issues in your prayers. I appreciate them all!!

Besty, Travis, Jack & Ned

Thursday, February 21, 2008

Peace in the Baby Steps

Today was a slightly uneventful day for little Ned. He really needed the rest after yesterday though! I think his body is finally getting acclaimated to the methadone (the oral narcotic) so they started weaning back off the morphine again today around 5:00pm. He began having withdrawal reactions around 8:00, but they weren't as severe as yesterday's. Today, he just spiked a little fever and had increased heart rate. The doctors completely attribute that to the change in the medications, but I believe it was an answer to a very specific prayer. By the time I left aroung 11:00, he was doing much better and had been resting peacefully for a couple hours. They are hoping to turn off his morphine tomorrow morning so tomorrow may be a bit of a rough day for him, but at least it will be behind us....praise God!!! Another praise is that they were fearing that he may be getting an infection with the onset of the fever, but his white blood count was lower than it was this morning, so that pretty much ruled that out!!!!!

Ned went on a field trip today and had a CT scan of his chest. The great news is that everything still looks completely in order from his hernia repair surgery. They were wanting to look at his lungs because his left lung appeared to have some fluid build up. Once they performed the scan, what that actually found was that his left lung was partially collapsed. I know that sounds like a severe incident, but they seemed to prefer it over a fluid problem. The doctors said they would adjust his vent settings to reinflate his lung and give it some extra support for the next couple of days. It is likely that the collapse was caused by his breathing tube being too far down in his lung which was causing some agitation. Because Ned doesn't have a diaphram on that side, if his breathing becomes too labored due to any extra burden, he just doesn't have the muscle support on that side to carry the slack...hence the collapse. I believe a couple days on the new vent settings should correct the left lung, but they'll watch for progress on his daily morning chest x-rays.

The last issue for the day is that Ned is showing some signs of some liver damage. It isn't anything serious, but he's looking a little yellowish. In fact, his nurse tongiht was referring to him as her little oompah loompah (so not sure of the spelling)! The damage is coming from him always receiving all of his nutrition intraveneously from what they call TPN which is basically gatorade in bag. The doctors aren't worried about it, but they woud like to get him switched over to breast milk as soon as possible. Having said that, they are most likely going to trade his feeding tube out tomorrow for an ND tube which will feed past his stomach further into the digestive track, to allieviate stress on stomach function and to reduce spit ups and reflux issues. They don't want him spitting up very often for fear that it will aspirate into his lungs and potentially cause something dangerous for him like pneumonia. It will be such a blessing to have him on normal, digested nutrition because it will help with healing all around.

I have shared so much medical information tonight, I have gotten too sleepy to type what God has been teaching me the past couple days. I'll share first thing in the morning, but I find when I keep typing once I've past the point of holding my eyes open, it makes little sense in the morning when I review it. So, I know God wants me to share everything that He teaches me during this time so that He can be truly glorified, so I'll let you know what I have been learning about pride and being refined in the morning.

Thank you for your continued prayers for my son. The answered prayers are evident daily and I praise God everytime one is answered!! If you get a chance, please review the blog for Baby Seth. His mother, April, recently found out he was diagnosed with CDH. She is heading to CHOP tomorrow for a complete fetal diagnosis. I know what a dark road she is going to travel and she knows it all to well herself. April lost her 2-year-old daughter in 2006 to a diseased that damaged her lungs. Please keep her and her family in your prayers! Thank you all so much! You are so loved for your faithfulness!

Betsy, Travis, Jack & Ned

Little delays

We have had some problems today that prevented Ned from being weaned from the vent and it may extend extubation for several days. Since birth, Ned has been on a healthy, continuous dose of morphine. In order to leave the intensive care unit, Ned has to be off the vent and off the narcotics drips. They have been slowing reducing the morphine over the past week, but apparently we hit his threshold today because he was completely unable to endure that last reduction. As a result, he has had several withdrawal attacks today: shaking, sweating, and rapid heart rate.....just pitifully agitated and mad! So the game plan is to give him two other narcotics, which are administered orally, in pretty high doses. Once his body has become addicted to those drugs, we'll slowly try to pull the morphine away assuming he won't notice as much or that we can reduce his withdrawal symptoms by pumping him up on the other medications? I know it doesn't sound like a very ethical plan, but, we can take the oral medications home with us and wean him off over a much longer time frame. Anytime they say it's something we can do at home, I jump all over it. Please keep little Ned in your prayers tonight, it is very difficult to see such a small child going through drug withdrawal. My main source of solace is that he won't ever remember this....just I will!!

I have known many people recently to be experiencing addictions or family members with addicitons. As I watched Ned today, I thought that addicitons really disrupt everything. They disrupted the only plan of a 1 month-old baby and they disrupt families, careers, dreams, hopes, friendships...they ruin lives. And while it is so easy to blame the addict, as I watched Ned today, he had lost complete control to the morphine. His body wanted something it doesn't need so badly it was almost as if it spoke for itself. While Ned's drug use wasn't a choice he made of his own accord, I just think once you've become addicted, how you got there means very little, but realizing how far you've got to go to get clean appears as a long road often paved with guilt. My heart hurts for those whose lives have been completely disrupted by addictions. I've always wished there was an easier way for people to clean up, but since they aren't offering any great solutions for my infant, I think this is it.

That's all for tonight....basically just a very tired rant on addiction as it has been on my mind all day- my thoughts were probably much more clear and concise before midnight came and went! I'm just loving and praying for my little addict tonight.....I hoping this will be the last time he ever experiments with drugs!

Wednesday, February 20, 2008

"Historical": More like hysterical!!

I completely forgot to share yesterday that while a new surgeon was evaluating Ned's wound from the CDH repair on Saturday, he called him "historical". I found this quite an odd statement about newborn child, so I prodded a bit. Dr. Duncan (the surgeon whom I had never met) went on to tell me that Ned is only the second child in the history of the world (very dramatic) to have both the CDH and the heart coarctation and survive without having to go on ECMO! For a breif moment I was beaming with pride, then he said, "I'm really hoping that this kid survives so I can submit an article on his case to the medical journals". Yes, that's correct, he said that his book report hinged on Ned's survival, that's why he was hoping Ned could pull through. While I could have been offended, we have had too many blessings to be petty at this point, so, of course, inappropriate laughter was my response. I just agreed with ole Dr. Duncan and said, "well, I'm hoping he survivies too, but not so much due to my interest in your paper." The most hilarious part of the whole conversation is that Dr. Duncan seemed somewhat offended that I wasn't as taken with his paper and he thought I should be....how funny is that? On a serious note, Dr. Duncan also said that if we had delivered at many other hospitals, they may have refused to perform the repair surgeries on Ned assuming that his chances for survial weren't strong enough for the risk or they would have performed the hernia repair first. Having that knowledge just confirmed to me how God had been leading and guiding us from the very beginning. He always knew where we would be best to deliver and He led us to exactly where we needed to be! How thankful am I that God loves us and lights the path beneath our feet!

Ned and I had a great day today. Not much changes for him, but I finally got to clip his fingernails. They were beginning to look dangerous! I'm unsure what maternal duties I can perform while Ned is here, so I wait for the nurses to give me the go ahead on everything. I am also starting to know Ned. Now that he is waking up more, I am able to read him and know his moods. I can tell when he is seeming uncomfortable and today, I could actually feel with my hand when he had some rattling in his chest and needed to be suctioned. Although all the doctors can feel and make that same determination, I typically have such dulled senses that I perceive this ability almost like paranormal 6th sense! I know it's really not that special, but I'm still glad to be able to assess his condition...it makes me feel more comfortable about when we take him home!

I think my little man enjoyed being held yesterday. This afternoon when I was holding his little head in my hands, he pulled to his side a bit by crossing his right arm across his body in my direction. I'm sure he was reaching to be picked up again! I can't wait until I can comply with his request!

God has been so good to give me peace and comfort. Even as we have taken some steps back with the vent and we are always vigilant for infections, I have been able to remain on the mountain top! I remember telling God that I would follow Him through the deepest, darkest valleys, but I was believing that He was going to bring us out on the mountaintop and when He did, I would sing His praises. If there is anything about this journey that is amazing, it is all God. His grace and mercy have carried us through a difficult time and taught us ( in a very real sense) that God is capable of calming all storms.

I remember the day I was on my way home from Shelby when Ned was diagnosed with CDH. There was a car in front on my on Hwy 150 with a bumper sticker that simply said, "The Power of God." I was praying that God would display his power to me and He has certainly displayed magnificent power during the past several months in my life! I am just so thankful that he allowed me to have this experience. When it's all said and done, my faith, my foundation, and my family will be strengthened because of the blessings we have expereienced during this trial. I think now that is how Paul came to be thankful for his sufferings.

My first view of the scar from the heart surgery....I'm completely impressed!

Love to you all!
Betsy, Travis, Jack & Ned

**Please continue praying for lung and heart health and a successful extubation next time around!

Monday, February 18, 2008

Dr. Stewert calls me: Punxsutawney Ned

Well Folks, He poked his head out free and clear of the vent for about three hours, but it looks like 6 more weeks of winter! Just kidding, it shouldn't be that long? They took Ned completely off the vent this afternoon and he did well for a couple hours, but his breathing just became too labored for him and they had to re-intubate. It was the most wonderful site to see the entirety of his beautiful face!! I thought I had an idea of what he looked like until I finally saw him...then I realized the piecemealed image in my brain was somewhat skewed (and hardly did him justice). They'll give him a couple more days on the vent which is currently working to train and build-up his muscles to teach his body to breath properly. The next time they extubate, I think they're going to try the CPAP before the nasal canula (shown above) which offers a little more pressure support.

More good news:

They finally let me hold my little punkin for the first time today!!! It was a quick visit as they were preparing the medications and equipment to re-intubate him, but after 4-weeks of sitting beside him, wishing I could comfort him, it was that wonderfully familiar kind of feeling like coming home to your own bed after being gone for too long. After I spent Sunday with Jack, I wondered if I would be able to build that same kind of relationship with Ned. (I couldn't ask for better interaction with a 3-year-old than I enjoy with Jack...I genuinely enjoy his company) After I held Ned today
and we had a little bonding time, I knew we'd clicked! It was a very surreal yet natural feeling. I don't believe I've ever shared this, but when I was pregnant with Ned, my most frequent dream was that immediately following birth, he and I could have complete sentence, verbal discussions (he wouldn't speak for anyone else- they thought I was crazy). While holding him today, I felt so connected with him, I wouldn't have been completely caught off guard if he had struck up a conversation.

Such blessings we have received! I am learning that this is how God wants us to live....not just how He wants us to survive this trial. Today, Travis received unofficial word that his company is going to be announcing a layoff. Unless there is some exclusion given to his group, he will most defininely be affected. While driving back, I was praying and wondering, "God, when is all this unrest going to end for our family?" He answered, "this is your new lifestyle." I'll have to say, I didn't take to it at first. He reminded me of his life-long relationship with Abraham and how it all began with Abraham leaving out from his comfort zone, with no direction, at the single command of God. It was never God's character to ask someone to follow Him a single time, reward them, and then abandon them. He seeks for His children to walk with him daily (all day, every day). Abraham had many trials and many blessings, but they were over the course of his entire life. Now that I have come to a place where I can trust Him with my children, it was much easier to hand Travis' job over to Him. I said I would ALWAYS trust Him with everything and I can't treat the miracles He has bestowed upon Ned as a one-time gimmic....It's His nature!

I am continuing to pray that Ned's little body will find the strength to maintain on its own and that he won't have to endure much more struggle before reaching a state of autonomy. I pray that he will be able to wean off of the narcotic medications without having to endure withdrawal symptoms. If you will also keep Travis' job situation in mind. I believe that God will show him the direction in which he wants him to go; however, I know he is feeling unrest about the uncertainty of it at the moment. Thank you all for your continued prayers.

Also, for those of you who link to other blogs, a note of praise.....Livvy is now at home!!!! Praise and Thanksgivng to God!

Love you all-

Betsy, Travis, Jack & Ned

Friday, February 15, 2008

They Said the "H" Word

Ned's daily progress is nothing short of amazing! I mean, the fact that he has come out of heart surgery and immediately starting weaning of all medicaitons and the vent without hitting one tiny bump in the road is nothing short of miraculous. For me, it is like watching the parting of the red sea. I mean, I sit there watching them make all these changes and think, "this may be the step where Ned jumps ship and refuses to take anymore advances at this time", but, so far, that has never happened. I imagine it is the same excited, apprehension the Hebrews felt as they walked between the walls of the red sea....fearful to believe they could make it quickly to the other side.

They gave him his first food today, just a little pedia-lite- he is accepting it well and we even had a poop! I would never have thought that body secretions could have made me so happy, as I have a very weak stomach and am not the least bit entertained by body functions, but it was a glorious moment!

For those of you who don't know, the "H" word is Home. That's what I said, our doctor used the "H" word today. He is still far from ready to put a timeframe on it, but he did say we were making progress and moving in that direction...toward home, that is....I just like to keep saying it! Don't know if I have mentioned it, but Ned's name in the PICU is "Rockstar"! I am so proud now every time the doctors come in, they tell me how miraculous he is. All I can say is "I know"...and reiterate how thankful we are!

I was just telling Ned tonight how proud I was of him for listening to all I had told him prior to his birth. I spoke with him often, and the main point I attempted to drill into the subconscious of the child in my stomach was that he was blessed because he was getting the opportunity to learn at a very early age what some adults never catch onto.....he would learn how to completely trust in Jesus and rest in His arms. Ned would have to allow himself to be carried from the very beginning and I asked him not to fight against it, but just to rest in God's abilities. These were the conversations I had in public with my very protruding stomach as I walked around Lowe's grabbing up items needed to finisih the construction on the house. I'm sure the gentleman working in the hardware isle thought I was not only completely indecisive, but also somewhat off my rocker?

It's amazing how attentive children are to the calling of the Holy Spirit. When I prayed that others would wake and pray for Ned when I was too weary, there were children who were awoken by His urging. Isn't that both amazing and shameful. We as adults fill our minds and hearts with so many other things, that we miss what our toddlers clearly hear because their lives are still so simplified. No wonder Jesus rebuked the disciples for sending the children away and called them unto himself. They were capable of truly "hearing" the message.

I don't know if anyone else noticed, but my cousin's daughter was having a conversation with her mother on Wednesday about Ned's heart surgery. Her mother was trying to explain why the doctors needed to correct Ned's heart. Her goal was to simplify the anatomy lesson to the level of a 5-year-old so she could gain a basic understaing of heart function. After she had given her daughter the best explanation she could muster, she hesitantly asked if she had understood why the heart was so important. Without hesitating, and without any prior discussion from this perspective, her daughter answered, "yes, because that is where God lives." As profound as that is in its own innocent truth, the enormaty of that statement is increased when you know that just a day before, I stood over Ned's bed telling him not to worry- of course, this pep talk was mainly aimed at myself- because God was the great healer and if He had a specialty, He was most certainly a heart specialist. "Besides, I told him, God's home is in your heart and he won't settle for anything less that perfection."

Good Night and God bless you all! I love you all dearly!

Betsy, Travis, Jack & Ned

Thursday, February 14, 2008

On the Road

Just a quick update.... Betsy and I left the hospital this evening to eat dinner, run to Wal-Mart and let the nurses do shift change, so we're on our way back to the hospital now. Ned's progress is still remarkable today, one day post surgery. The doctors and nurses in the PICU are still fighting over who gets to be with him everyday, and they are actually calling him the PICU mascot. They took out his chest tube (to empty the chest cavity of any fluids, air, etc.) this afternoon, and the surgical team actually wanted to start feeding him through the stomach tube today, but the PICU doctors said they wanted to wait until tomorrow. They are still working on weining him off the vent, and getting his blood pressures down (rather than up) as his heart is now able to pump blood to his body a lot more freely (not having to fight the coarc). His color is so much better right now as well.

I just keep thinking about how before surgery, the surgeon was going over what was going to be done, and all the rishs involved, from cardiac arrest on the OR table, to his lungs collapsing, to permanent paralysis of his lower body, etc. Betsy and I finally just told him that we have dwelled on statistics and risk numbers for so long (CHOP giving him 30% survival rates after birth, 80% chances of going on ECMO heart/lung bypass machine, etc.), that we really didn't need to hear about the risks anymore, that we had put Ned in God's hands a long time ago, and we were trusting Him through this. The surgeon actually seem relieved that we said this, as I think it was hard for him to put a percentage on the risks in the first place. As we have stated before, the surgeon is still checking in today and still as excited as he was yesterday about the outcome of the surgery. It is just so evident by looking at Ned and even at all the monitors and medications (which are a good bit fewer) that God definately had his mighty hand in that OR and in that hospital.

We'll post again later tonight or tomorrow, but for now I just want to thank you all for your prayers on our behalf. Betsy wrote earlier about how she woke up praying on Tuesday night, and just could not put together a cohesive sentence at the time, and that she prayed for God to wake people up to pray on our behalf. It is SO AMAZING how so many people have emailed us to tell us that actually did wake up to pray during that night. We have heard so many people telling us that they prayed, anywhere from midnight to 4:30am. I want to thank you all so much from the bottom of my heart for your thoughts and prayers during all this.

Well, Betsy is telling me to stop typing so we can head back over to UNCH. I'm sure she'll continue with an update later.

Love you all.

In Christ,

Travis, Betsy, Jack & Ned

Wednesday, February 13, 2008

How precious is the view from the Mountain Top

This has absolutely, hands-down, been the greatest day of my entire life!! I wish I could truely express the overwhelming feelings of thankfulness, joy, peace, relief, excitement, anticipation, and fulfillment that I have experienced today. If I weren't so old and out-of-shape, I could have turned cartwheels down the PICU hall all afternoon.

As I mentioned earlier, Dr. Stewert was thrilled with the outcome of the surgery. While, I could tell he was wanting to remain "cautiously optimistic", as any professional surgeon would, he couldn't help but looking like a kid on Christmas morning as he peered over Ned's bed for hours after the surgery. He just kept repeating (mostly to himself I think), this is "un-freaking-believeable". He also told me that the outcome was more than he would have dared to even ask for. I later thought, "not me, if you had any idea what all I had asked of God lately, this outcome may not shock you at all?" All I have been able to do all day is drop my head and say, "thank you, thank you, thank you, thank you....a million times over".

We had planned on staying in the hospital tonight becuase we expected his stats to be really unstable following such an invasive surgery on such an already tenuous child. The medical staff had prepared us for what they truely believed would be a really rocky recovery, if recovery was even feasible. We have really seen today that the staff had reached a consensus that Ned's chances of coming through the surgery without major complications were slim-to-none, so it was basically a party in our room all afternoon. However, his little stats have not only remained stable since the moment he was wheeled back in from the OR, but they are better than they have ever been and they are already working on weaning him off of the conventional vent. As usual, God provides over and above what we need and desire. All I was asking was that he be able to survive the surgery, but God has allowed Ned to be the all-star, super-hero child of the PICU. We may still have some battles to face with weaning, blood pressures, eating, and the last bowel surgery, but we feel like we have cleared the top of the mountain. Not so much even because Ned is doing so much better, but because when we continued to cling to and trust in God, He took us to heights that nobody thought were attainable. We have been blessed beyond measure and in a miraculous nature....today we have been able to rest on the mountain top in the arms of our Savior that carried us through our darkest hours!!

I wish I could begin to thank you all for all your prayers and do some justice to the gratitude I feel in my heart to each and every one of you. You will never know (until we all get to heaven), how your prayers affected our lives and the life of our child. In fact, last night, I couldn't sleep, but was too tired to pray so I asked God to wake up others to pray for me. If any of you were awakened....that's my fault? If at anytime I can ever repay you for your love and kindness, please know that I am so ready and willing to return and give back the blessings I have recieved.

When I got to talk to little Ned today, I told him, "you have already built such a living legacy." I can't wait to teach him about how the Lord used his life to touch the lives of others in the name of Christ and for him to really be able to take in all the goodness that was bestowed on his little life. I am always trying to teach my Sunday School kids about what I call foundations of faith. These are the times in your life when you knew, that you knew, more than anything in the world, that there was a real and personal God doing a work in your life. These foundations of faith are there for you to lean on in times of struggle so you don't crumble under the pressures. I can look back now and see how God was preparing Travis and I for this journey for at least all most 3 years. I am so thankful for the work He has done in and through our family. I am thankful that he reveals Himself to us before He takes us through difficulties so we know we can lean on the power of His presence.

Last thought for the night....I looked at his little body this afternoon, so pink now, and I thought to myself, "you were labled a reject, not worth saving. Doctors told me to scrap you and start over. But I knew then that you were a blessing in disguise and you were so worth saving!" That's how we all are. We're all a bunch of labeled rejects, nothing to offer, and not worth saving. But God looked upon us and loved us in His fatherly way and knew how beautiful we could be (they way He created us to be). And He did what any loving father would do, He gave all that He had to ensure our safety and security though salvation. It makes so much sense when it's put into perspective doesn't it?

Love you all!

Betsy, Travis, Jack & Ned

Surgery is a Success!!

Dr. Stewert just came in to let us know that the surgery went as good as he could have possibly expected. He acted somewhat surprised and extremely relieved....as was I. I haven't seen Ned yet, but all I know is that his heart is fixed, he is almost certainly out of the woods for any severe complications with the surgery and they said his left lung (the small one) is looking significantly larger than expected. I have never been so certain that God has been in control of this from the beginning. I couldn't ever have guess how He would work this out, but I just can't help but going back to the day Ned was diagnosed and God said to me..."Betsy, are you going to trust me?". For sure now, without hesitation, my response is ALWAYS!!

I'll update with more details later....I'm on the hospital computer?

Love you all. Your prayers and faithfulness have brought us through the darkest time and I am forever grateful and blessed for all you have given us.

Betsy, Travis, Jack & Ned

Tuesday, February 12, 2008

Not Exactly Chrisftmas Eve!!

Although the correction of Ned's heart will be a huge blessing, it has been very difficult for me to approach tomorrow from a standpoint of anticipation. I would like to say that I am excited about getting through the heart repair, but the truth is that I am completely terrifed of the procedure. There are moments when I can come to a point of peace, but I can't stay there. I think it is because there are so many ups and downs and uncertainties right now that once I come to level ground, it is unexpectedly pulled out from under me again.

Today began on a great note. We met with the cardiac surgeon, Dr. Stewert, and he was walking us through the details of the surgery and giving us statistics on what we can expect for potential outcomes. I know many of you are wondering how those statistics play in Ned's favor, but I'm just not willing to put some of the potential poor outcomes into the air. The upshot is that it is most likely that he will return from surgery in much the same condition he is in currently with the state of his lungs and working through blood pressure issues. Then there are extreme cases from basically complete healing to some other really devastating outcomes. As we told Dr. Stewert today, we have spent too much of our time and energy caught up in the statistics we have been given regarding Ned's survival. We made the decision many months ago to ignore those statistics and BELIEVE that God was greater than that, that He was bigger than all of Ned's birth defects. We placed Ned in the hands of God and that is where he remains. It is difficult for me to leave him there. I want to be able to meet his needs, but I find myself at a place of completely inability.....as weak as I have ever felt. Almost too weak to lift up real and coherent prayers.

I don't know if it was because Ned's day wasn't all that great today or because I had the impending surgery looming over my head, but it was extremely difficult for me to leave his little bedside tonight. We had blood pressure issues all day, but seemed to have gotten the under control several hours before we left. Once that was cleared up, I was feeling pretty steady until our nurse told me that she hoped that Ned had a good night because they wanted me to be able to hold him in the morning prior to his surgery!?! While I have longed for and daydreamed about the moment I would first get to snuggle my sweet son in my arms, something about the urgency of needing to get that in prior to surgery has left me completely unnerved. I know it wasn't their intention at all, but I just felt like they were saying, "we want you to be able to hold your child before his surgery....it may be your only opportunity."

Ned will leave at 7:10 in the morning for his coarctation repair. The entire procedure should take 2-3 hours; however, the actual heart repair part shouldn't last more than 20 minutes. Please pray for little Ned tonight (if anyone is still up) and in the morning. I am just praying that God has already ordained and prepared this situation so that He can be glorified. I am praying for the doctors and nurses in his OR....that they will be given discernment by the Holy Spirit and that God will be in complete control of them as his surgery takes place. I am just praying the the power of God will be fully displayed tomorrow in the way we all respond during the surgery and the way Ned responds to the surgery. I am also praying that once we are past this, that I will always be aware of how God spared my sweet son and that it will motivate me to always be certain that I am teaching him how to live his life serving God. I have a much better understanding of how Hannah was able to pray to God that if she could only have a child, she would give him back to God. While, I don't have intentions of dropping Ned off at a temple, I do understand that Ned will have been saved for a purpose and that it is my repsonsiblity to ensure that he is groomed and prepared to meet his task.

Thank you all for all your prayers. Please keep them coming! Could you also pray for my friend Tricia today...her daughter, Cadenne, is linked on my blog. Tricia had a really difficult day in the hopsital. Cadenne is fine, but working your way through hospital changes can be really difficult on a mother and sometimes it is overwhelming when you can't mother your own child. She and her family have been extremely faithful to pray for us and I am asking that you lift her up on a day when she is struggling as well.

I love you all dearly!

Betsy, Travis, Jack & Ned

Monday, February 11, 2008

Keeping us on our toes!

Quick change...surgery is now on for Wednesday?! Praise God, there have been no setbacks that have caused the doctors to delay the surgery date. They have just decided to give him another day on the conventional vent and some more time to come off some more of the medications. Thankfully, that gives us more time to get "prayed up", as I have often heard the term used. It basically means to pray to a point of spiritual rest and comfort. To me, it is less of a saying and more of a state of being. It's where we should all live....prayed up!

I want to go ahead and share something God has laid on my heart this morning. I have received several emails within the past several days from people who are struggling with other issues in their lives. Most of the emails begin in a very apologetic tone as if I am being bothered by their request for prayer. Others have even avoided ever sharing with me what it is that is weighing so heavily on them for fear of over-burdening me. While I so appreciate everyone being so sensative and compassionate towards me, I don't want this to become a period in my life that is about me and what I need. While everyone feels a sense that all my attention should be focused on Ned, I want God to continue to be able to use me. After I say this, you may feel the urge to contact DSS, but I hope you'll hang with me a few moments while I explain. I don't need to focus on Ned right now. In fact, there is no time in my life when I need to focus on my children. I have looked back on it this morning and as best as I can find, there is no where in God's word where He directs us to focus on anything other than Him. I am looking to Him knowing that He holds my children. It isn't that I wouldn't love to fix Ned, all on my own, right now; but, that isn't a possibility for me. On a smaller scale, I am unable to cure Jack's cold, force kindness into his heart, make him desire to share his toys or to treat everyone with the same love he shows me? No matter how much I focused my attention on these efforts, I could never be assured that my best attempts would prove successful. How liberating that all I have to do is focus on Jesus and trust my children into his care. Before we came to Chapel Hill, Travis and I prayed that if the Lord wanted to use us in any way while we were here, that we would be sensative to the calling of the Holy Spirit and that we would find our way through our fears to be obedient. We want those oppotunities so that the blessing of the Lord can really continue to flow as our faith is being both tested and multiplied.

I am thankful for the prayer requests that I receive. I believe that as people of God we should rejoice in praying for others. I love knowing where people are in their lives and their spiritual growth and what their struggles are at the moment. I enjoy praying for others because I enjoy seeing God answer those prayers and work in the lives of others. That's how our lives become blessed. I think this is a difficult place to reach in our lives because we do think we can control everything and that our families are our burdens and our responsibility to protect, but there is actually little truth in that. We are all children of God and He holds us all in His righteous right hand!

I'll keep everyone posted on the surgery. In the meantime, the words of this old hymn have been a favorite for Ned and me lately. It so speaks to where we are:

Turn Your eyes upon Jesus,
Look full in His wonderful face,
And the things of the world will grow strangely dim,
In the Light of His glory and grace!


Sunday, February 10, 2008

Surgery is a Go!

As it goes in the world of critical care for children, we have very quickly (and so far very successfully) weaned little Ned off of the jet vent back to the conventional vent today!! The doctors would like him to remain stable on the conventional vent for 24 hours prior to the heart surgery to fix the coarctation, so as it stands at the moment, Ned's surgery is a go for Tuesday! While the medical staff seems extremely excited about his progress and their ability to move forward, I am feeling apprehension about sending my 3-week-old son off to yet another risky surgery? Please pray that I will again be able to find a place of peace and comfort in completely surrendering my son into the hand of the Father. When we've been through a time of stability, I find it difficult to face going back to the rocky places (which I fully expect to have some rough patches after surgery) even though I am being led and protected by the good shepherd. In the times of stability, I am lured into believing that I am able to maintain some semblance of control over our situation. However, there is no truth in that emotion and I am fully aware that striving to control my life doesn't offer near the peace and blessing that resting in total surrender does.

There have been very few medical changes over the weekend other than the vent change. Ned received a new breathing tube when they changed his vent because his was leaking air because the tube was too small. The doctors beleive making that change, made it much easier for him to adjust to and accept the vent swap. They also put a very small tube in his side on Saturday to let out some air that had gotten between the exterior of his left lung and his side (a side effect of the jet vent). I think they are planning on leaving that in a couple of days and then removing it although on the last x-ray, the patch of air is already completely gone!

With Ned's surgery coming up this week and the thoughts of so many people praying for his healing, I have been consumed with thoughts concerning intercessory prayer. The reason it has been so on my mind is that I have always had a difficult time with the whole concept. I'll explain...I just always believed that God had set forth a plan for each of our lives and that prayers that made attempts at changing his mind seemed pointless. Most of this belief was confirmed after Patrick, my brother, died in a car accident. I just felt certain that had I woken up that night and prayed for his safety, his fate would have been the same. And I still completely believe that. So, do I believe that prayers lifted up for Ned may impress God to allow him to be healed? Yes. Here is what I have concluded after some study. Intercessory prayer is prayer that is completely on behalf of others. Prayers that, if answered, bring nothing to the faithful saint offering the prayer on the behalf of someone else. If I had woken up and prayed for Patrick that night, it wouldn't have been for his benefit, it would have been for mine. So many sentences in that prayer would have begun with "I". "I" need Patrick here, "I" don't know what "I" would do if something happened to him, ect. While Patrick would have been the subject of my prayer, the blessing would have been meant for myself. That's not what intercessory prayer is..... In Exodus 32, when Moses returned from Mt. Sinai where he received the law of the Israelites from the Lord, he found them worshipping the golden calf, God was angry with them and told Moses He intended on destroying them. Moses interceeded on their behalf and pleaded with God not to destroy them. He approached God by reciting God's word and His promises to Abraham and his descendents. By communicating with God in this manner, the Israelites were spared. So, I have learned a great deal about and come to understand that as Jesus is interceeding with God on our behalf for our sins, we can certainly intercede on the behalf of others so long as our intentions and motives are pure.

I also wanted to share something that jumped out at me the other day. I was reading in Matthew chapter 14....one of my favorite passages. The more I read about when Jesus walked on the water, the more I learn from it!! Anyway, I have for some time noticed that Jesus "made the disciples get into the board and go on ahead of Him". In other words, He pushed them out into the middle of the lake into what He knew was going to be a raging storm. Although Jesus knew the storm was coming and His disciples were going to be in danger, Jesus took the time to get alone with the Father and pray. But what I most most struck by this time is that not only did Jesus wait until the 4th watch to save the disciples, even in the midst of their panic, Jesus walked toward them. I know, for me, at times when I feel like I'm in the midst of a terrible storm and I'm feeling afraid, I want Jesus to run to me, swoop me up and end the struggle immediately. But, my ways are not his ways, his timing allows us to reach that place of complete surrender because we have exhausted all of our own resources. I'm sure that as that storm picked up, those disciples had tried every effort known on this Earth to get that boat to shore. They had probably attempted to row in while dumping buckets of water back out over the edge. By the time Jesus came to them "walking" on the water, they had struggled enough on their own that they were at a point of accepting that He alone had the power to save them from their storm, Just as He alone has the power to save us from our storm. I'm just praying that our family can keep our eyes fixed on him without getting distracted by the wind and the waves so that we can walk with him over the storms that threaten us at the moment.

Thank you all for your continued prayers. I hope this entry makes sense....I can hardly hold my eyes open tonight so if this is incomprehendible, I apologize. We are, of course, asking that you continue to pray for Ned's health, the doctors healing hands and discernment with regard to Ned's best interest, and our ability to surrender our child unto God and to trust Him completely with little Ned. We love you all so very dearly!!

Betsy, Travis, Jack & Ned

Saturday, February 9, 2008

Update on Ned

It's a little after 9:00pm, and I just returned from the hospital to the RMH to get some Advil and blog for a minute. I think Betsy is enjoying her time in Cherryville with Jack, even though he seems to have a cold. Ned is still doing okay today. Upon my arrival to UNCH this morning, the nurses informed me that instead of going from 30 mm to 29 mm on the jet vent during the night last night, they had to go back up to 31 mm where he's been all day, because one of his blood gases wasn't perfect. The doctors then came in and told me it looks like we're "pretty much there" in terms of getting off the jet vent, and that they would most likely be doing the heart coarc repair on Tuesday. Hearing those words did strike some fear in me, as we have been praying for his jet vent settings to go down so we could get on the regular vent and through this surgery, and now that the time is coming next week, I'm kind of like "whoa". I do know that he is in God's hands and I have prayed over him all day long just asking God to please take care of our little punkin, and thanking Him for everything he's been doing in our lives. I truly am helpless in this situation, and there are no stronger hands than our Lord's for our son to be in. I can't help but think back to all the times on this journey, and how many answered prayers there have been. I know without a doubt in my mind that we could never have gone through all this without a Lord and God that deeply cares for us.

My brother Alan and sister Danielle came up today to be with me, and we had a good visit. Bubba (Alan) drove up from Denver and Danielle came down from NC State and we had lunch. As D left for work, Bubba stayed the rest of the afternoon with me (I think just so we could go to Mama Dip's to eat supper!) and Ned. Bubba, Ned and I even got the Duke game in this afternoon. When I left, Ned was resting peacefully, and they were getting ready to drop the PIP on his vent down to 30 and keep weining him through tonight and tomorrow and Monday. Please continue to pray that Ned will accept these changes, and please start praying that this heart surgery will go without a hitch, and Ned can get on the road back to recovery. While we are confident in the pediatric surgery team up here in UNCH, we are more confident in Christ, am we are believing, and expecting, that His merciful hand will guide the doctors through this repair, and we will be bringing Ned home with us.

While I was home Thursday night, Jack asked me when we were bringing his baby Ned home. I simply told him the truth, "Son, I don't know, Ned is sick, but he's getting better and better." Jack then asked me if he could play hide and seek with him when he finally did get home. I of course said sure, and today I told Ned that his big brother couldn't wait to get him home to play hide and seek with him. It's moments like these that I truly feel reassured that God IS IN THIS situation, and that one day, we WILL be taking him home to play with Jack and Margaret.

One other side note to tell all of our faithful praying friends and family about. One of my good friends (Tuan Bui) owns several gas stations in the area, and last Tuesday, his mom was working at one of them in Fort Mill, SC, when a guy came in to rob the store. She did exactly what she was told, gave him the money, etc., and this person still shot her in the abdomen on his way out, in addition to the former mayor of that town who was coming into the store. She was in the ICU at CMC until today, when they moved her to a regular room I believe. He and his family are holding up okay. What amazes me is that he really didn't even know about Ned until Tuesday when one of our other friends who works in the ICU at CMC saw him there with his mother, and told him our story. Ever since that day, even though he is in the middle of his own crisis, he has called me to check on little Ned. I of course assure him that I am praying for his mom as well. Please keep this woman and her family in your prayers as well.

As I was proofreading back over what I've written, I was thinking...man, I must be out of touch tonight, I feel like I have nothing to offer. I was then taken by the Lord to yet another verse that I have on my computer at work, that I read everyday. Oswald Chambers writes in the July 27 entry of "My Utmost for His Highest"... "If things are spiritually dark to me, then I may be sure there is something I will not do". I have this posted on my PC to remind me that it does take sacrifice and discipline to stay in God's word daily, and keep your walk with Him going. On the flip side of that, be assured that once you are His though, he will never depart from you. You can turn your head from Him, but when you do decide to turn back, He will be there waiting. I was then taken to today's entry, February 9th, and wow! Reading all the comments and emails that you guys send us makes us that much more thankful that God is leading this whole thing. The entry for today touches on that. The scripture is Isaiah 40:28 "The everlating God ... fainteth not, neither is weary." Chambers then goes on to say: "Are you exhausted spritually? Exhaustion means that the vital forces are worn right out. Spiritual exhaustion never comes through sin but only through service, and whether or not you are exhausted will depend upon where you get your supplies. Jesus said to Peter -- 'Feed My sheep,' but He gave him nothing to feed them with. The process of being made broken bread and poured-out wine means that you have to be the nourishment for other souls until they learn to feed on God. They must drain you to the dregs. Be careful that you get your supply, or before long you will be utterly exhausted. Before other souls learn to draw on the life of the Lord Jesus direct, they have to draw on it thorugh you; you have to be literally 'sucked' until they learn to take their nourishment from God. We owe it to God to be our best for His lambs and His sheep as well as for Himself." This whole passage reminded me of time and time again where our Bible study teacher has told us "Inflow, outflow". By spreading the word of God, and being friends to the friendless, creditors to those in debt, and prayerful for those who don't pray, you are giving of yourself. God in turn fills that empty space back up, with more supply than you could ever imagine. When we say to her "I wish we could start everyday over here doing this" (talking about our Saturday morning Bible study), she says "Sooner or later you have to learn to feed yourself". This has profound truth in it. I am certainly thankful that I have had someone to "feed" me for so long, to help me along the path of walking with the Lord. I think that God knew it would take something like this for us to really step out and glorify His name, to be a witness to his strength and neverending love for us. We all do OWE it to God to feed His flock. I myself am being fed, and I hope and pray that this situation God has orchestrated is feeding others as well. We are truly only vessels, and it's all about Him.

OK, I'm done for tonight. Please continue to keep Ned and my family in your prayers.

Much love to you all

In Christ,
Travis, Betsy, Jack & Ned

Friday, February 8, 2008

A Short Post From Trav

Betsy has gone home to Cherryville to see Jack, Margaret and her family for the weekend, and I came up after work today to stay with Nedder (as I have started calling him for some odd reason...maybe b/c I call Jack, Jacker). I went home last night (Thursday) to get my truck out of the shop and see the progress on the house, then worked today and came back tonight. Anyway, Ned is still doing well tonight. They have gotten him down to 30mm on the jet vent, and the Dr. told me that we're getting close to being able to get on the regular vent, hopefully by the end of the weekend. The nurse gave him a bath tonight right before I got here (I think his 2nd bath, boy is he in for a rude awakening when we get him home... 2 baths in 3 weeks???... me and Jack tried to skip his bath once... and only once if you know what I mean... Betsy doesn't like her babies to be dirty!) and he was not very happy when I arrived. She cleaned his incision very well, and he didn't seem to like that. They have taken the stiches out of it, and it's kinda open right now, to let any infection that might try to set in come out (better out than in I always say ... OK those of you with kids who insist on watching Shrek 4,000 times a week get it). It was heart-breaking to see that on your little child, but I know it's for the best, and it will help in the long run. Anyway, I caught myself, just for a minute, thinking "Why us?". God immediately reminded me of when I was talking to Betsy's uncle, and my very good fishing buddy and friend in Christ of mine, Mark, even before Ned was born, back when we first found out about Ned's condition, and I said to him that I was wanting to ask God "Why us?", but wasn't sure if that was my place or not. He simply looked me dead in the eye, and said, "Why not you?". This sharp comment, loaded with truth, has stuck with me, and everytime I find myself overwhelmed by the circumstances, I always say to myself, "Why not us?". I am thankful that God is richly blessing us, and hopefully everyone who reads this blog, through this endeavor. Being in a place like this, you really realize that the saying "it could be worse" is absolutely true. My prayer is that someone who may be reading this blog about Ned's life so far will gain hope and faith and comfort in our Lord and Savior. I really think this blog was God-ordained, and I'm so thankful that my wife was "listening" enough to start this. It's amazing how God puts people and circumstances in our lives to speak to us for Him all the time, and we just miss them completely. I know I do. I can only imagine how it will feel when we are with Christ and he shows us what all we've missed along this journey. That brings me to the next lesson I learned tonight. When I got back up here to Chapel Hill, I found Betsy had left me some scripture that Ann (our Sat. morning Bible study teacher) had sent to us up here. It was from Isaiah 49:2 that says, "In the shadow of His hand hath He hid me - and made me a polished shaft - in His quiver He hid me!" She went on to write that we must all go through the shadowey parts of life, the darkness. But then she went on to say that in the darkness is where we grow exponentially. It is then, that he is polishing us. That dark shadow we're in is actually the shade of His hand, holding us just within reach, and never letting us go. I take comfort in the fact that even in the "dark" times, Christ still has a firm grasp on my family. When we are not seeing the light of day, we are actually being molded, groomed, and hopefully growing in our faith and everyday walk with the Lord!

I'm so thankful for all of you that God has put in our paths along the way. I thank God for all of you that are sending cards and flowers, calling, and faithfully lifting Ned and my famly up in prayer. We have met some incredible people up here also, like James and Honey, who themselves have little Delsin who was up in the NICU beside Ned. I ran into them tonight, and it's very comforting to know that people you just met and don't really know are actually praying for your little one, as we are for theirs. Please keep Delsin in your prayers as well.

OK, I'm done for the night.

Thanks to all of you again.

In Christ,


Thursday, February 7, 2008

A Day of Rest

I spent my entire day by Ned's bedside from about 10:00am until 11:00pm. While I realize that doesn't sound like a day of rest, it certainly was blissfully peaceful. My little Ned came down on his vent settings some today (we're now at 31 and need to get down to the lower 20's for surgery) and he tolerated more small changes without any effects on his stats!!! In fact, his stats remained so steady today that his monitor didn't alarm one time all day. Since it was so quiet and my eyes didn't stay fixed on his monitors all day, I read an entire book... Max Lucado's "3:16". I recommend it....it's a quick read (obviously) and there is a good bit of Jewish and Greek cultural and lingual details that better define how Jesus would have been interpreted during His time on this earth.

There were several parts of this book that have really stuck with me today. The first is that in John 1:38 when John and Andrew first encounter Jesus, their first request from him is "where are you staying?". Lucado points out that their main interest is in getting to know Jesus, and in joining Him wherever He is. They could have asked for signs and miracles upon their first meeting in order for Jesus to prove His deity, but instead, they were interested in being near Him so they could better know him. I think that is so profound. We often give the Lord a laundry list of all the things we would like from Him and all that we would like for Him to do for us, but we haven't taken one step out of our routine and comfort zone to follow Him where He leads us. Whether you hear the voice of God urging you to "follow Him" or if you are simply seeking Him out to know something greater, it is important to realize that what you can learn from knowing Him is far more powerful than receiving what you demand from Him.

Today I am prising God for allowing me to be Ned's mother. I looked at my little one in his bed tonight and I marveled at how God could use such a tiny person to speak to the lives of so many adults. My life has been blessed to be a part of what God is doing in the hearts of others through Ned's sickness. I wondered how Mary must have felt to have been chosen to raise Jesus and how blessed she must have felt to have been given the honor of providing and caring for God in His feeble infant body....Wow!

God has answered our prayers to allow Ned to continue to slowly be weaned off the vent. We are praying for continuation of such success. I also want to praise God for answering the prayer of a close friend who has been having some fears and concerns about her ability to have children. We are also thanking God for allowing Travis to get home safely today. I thank God for the peace he has delivered in Ned's room the past couple days. While the road ahead still looks a bit rocky, I think it is important to focus on and give thanks for the prayers He has already answered. In seeing from where He has brought us, looking at where we're going doesn't look so insurmountable.

Again thank you all for your prayers, cards, emails, phone calls and other ways you have shown us love and support. I want to apologize for not always responding to emails. If I don't have your email address, I can't respond to the messages left on the blog? I just wanted everyone to know that when I can, I attempt to personally thank everyone for their love, but I can't always get in touch with everyone? Love and blessings to you all!

Betsy, Travis, Jack & Ned

Slow and Steady Wins the Race

Little punkin was looking much better yesterday than he has in some time. His swelling continues to "deflate" and his stats remained really stable yesterday. While glancing at him, it doesn't appear that it would have been a day of praise and thanksgiving, but it DEFFINITELY was.

Yesterday morning, Ned opened his eyes and seemed fairly alert without acting agitated for some time. He was able to track about the room with his little eyes (which I'm not sure if I've mentioned, but they are a deep grayish blue- beautiful). It gave me such a sense of connection with him, just to know that he could maybe see that Travis and I were there by his bedside encouraging him and praying for his recovery! They made some teenie, tiny baby steps in moving him off the jet vent and taking him off one of his blood pressure medications. As I have mentioned before, Ned does not accept change well. He requires that they make the absolute smallest incremental changes and then allow some adjustment period following each change (this is a trait he has inherited from his daddy!). Because he is so resistant to change, they have pretty much ruled out surgery this week. I actually think it will be the end of next week at the earliest, but we'll just see how God chooses to work that out. Since the surgery date is completely at the mercy of Ned's body, to me, that is the same as putting it on God's timing since he is the creator and healer of his body.

Travis has developed a love/hate relationship with the medical staff here as they are all UNC fans and he insists on wearing his Duke attire every, single day! The staff had some fun at Travis' expense yesterday, but I suppose, in the end, Travis got the last laugh last night! Below are some pictures of Ned showing off his UNC game gear (compliments of our nurses):

I am heading back to the hospital now. Travis has left to work today and tomorrow since the surgery is out for today and tomorrow. Today, I am just praying that my son can find peace and comfort in the arms of the Lord again today and that he can remain stable through the smallest changes. I pray he is tolerant and that it doesn't upset his little body. Please continue to pray for little Jack and Margaret. I want them to continue to feel loved and supported even though I have to be away at the moment? I'm just praying that I can keep my focus on God and not get bogged down with all the "what if" scenarios. I have to remember that my God is Good, my God is soverign, and my God has plans for Ned ...plans for a future!

I love you all and really miss everyone dearly. I have given much thought over the past several days to "my people" and how God referred to those he held most dear. I have gained a much better understanding of how precious "my people" are to me and what a special place you all hold in my heart. I so long to be close to you all again and I can't imagine how if I long to be close with you, how much more your Lord and creator must long for an even deeper closeness.

Love to you all!

Betsy, Travis, Jack & Ned

Wednesday, February 6, 2008

A Defined Purpose

It has been a very slow and steady day for our little one, for which we are extremely thankful. Ned's stats have been really good all day. He took a couple little dips tonight as they attempted to wean his vent a little faster than he was ready to accept so the doctor's eased back onto Ned's slow little pace and he picked back up rather quickly. The heart surgery still hasn't been scheduled and won't be until Ned is off the jet vent. His little body controls the pace of that so I am just believing that as I prayed that God would control the timing of the surgery to be best for Ned, that his low tolerance for change is God's way of making the doctors listen to Him!

Other than being thankful for the beautiful, uneventful day, I have been consumed today with really mediatating on God's purpose for this situation and for my life in general. I can't fully begin to understand how and to what extent God's purpose for Ned's life will be manifested, but I can see how God has used him in the life of our family already. I know that when Ned comes home, he will be coming to a more God focused home than he would have if we hadn't been through this valley. He will now come home not only to a mother who prays over him, but also a father who prays outloud and uninhibited for the sake of his family. He will come home to an aunt who has gotten past some anxiety to pray for him at school with her class. He will join a family who has truely been blessed to witness, first hand, the beauty and love of the body of Christ. And although he will never remember all of this, my little Ned will have already lain a legacy for Christ that most of us could only hope to have established by our last days on this Earth. I am excited about being able to let him know when he is older how God used him as an infant and my hope is that Travis and I will have given him such a foundation in Christ that this will only be the beginning of how Ned's life will impact others. I am also hopeful that by seeing how my very small son has been used by the Lord, that I too will allow myself to be used in even greater ways. That I can come to the father as His child, open and trusting to what He has in store for me and ready and willing for His service.

This birth experience has been much different from what I experienced with Jack. I'll share a quick encounter before I sign off for the night.....

About 6 months or so after Jack was born, I found myself completely out of touch with the Lord. I was still going to church, but just in the total routine change with adding Jack to the household, I had neglected to spend any quiet time in study or prayer with God and the effects of that change were becoming more and more evident to me. I remember thinking how I hadn't heard God's voice speaking to me in quite some time and I was becoming aware of the distance that I had allowed to come between me and my God. We were getting ready to go to the beach and I had planned to leave work at lunch, go by the mall for a new pair of tennis shoes and go home and get packed up (there's a lot to pack when you're taking a 6-month-old on a week's vacation!). I was running behind and didn't leave work until almost 2pm and I was completely frazzled. I contemplated skipping the mall trip, but I decided to settle down, relax, pray and allow God's timing to affect my life. I had gotten so caught up in routine with Jack's eating, sleeping, bath, schedules that my focus was on my time, not His. As I pulled off the interstate at the mall, there was a homeless man on the side of the road. I, of course, thought to myself, "how do people end up homeless....how did you get yourself in such a mess buddy?" As I ran in the mall, I kept thinking about that man and I clearly heard God say, "Betsy, take that man some money."....I protested, "But, he'll probably just take it and buy alcohol or drugs." God interrupted, "That's not your concern, all you need to do is obediently respond to what I am asking you to do." So, I go and buy a little Bible and then I go to the ATM. I take $20 out of the ATM and as it spits out my money, the machine says "transaction cancelled". I ask around, but no one knows who owns the ATM and I'm feeling like I have stollen $20? Anyway, I leave word at the cookie counter that I think the machine is broken and it may have given me money without debiting my account? I leave the mall and head back to the homeless guy. The whole way I kept thinking, "well, if I don't hit that red light, what will I do?" But God assured me that He would handle the whole timing issue. As I pulled up, the light turned red (His timing). I rolled down my window and handed the guy the $20 and the Bible. He had the most clear, blue eyes and he looked very intently at me and he said, "you know, don't you?" I was very taken aback since I thought I was the one who was being the little messenger for God, but I responded, "Yes, I know.... Do you know Him?" He looked me dead in the face and answered, "The only think I know is the Love of My Father." The light turned green, I drove off. It was immediately like God said, "If you will take the time and listen for me, I'll always talk to you and use you." It was and elated feeling knowing that all I had to do was turn back to Him and He was right there waiting to be a part of my every day life again. And it was all my blessing and benefit, I gave nothing of my own, not even my own $20.

Having shared that, I have just known that in this experience with Ned, I am learning a very different lesson than I did after having Jack. I don't think either is more or less important, but just part of God's plan to continue to strengthen my relationship with Him. I have thought often of Paul and how his time in prison led to the salvation of the Roman soldiers. In understanding his purpose, Paul was able to praise God for his struggles. I am seeking that same level of understanding and trust.

Please continue to pray for God's timing with regard Ned's surgery. While I am so anticipating being past the heart surgery, I am learning patience in yeilding to and trusting God's timing. Like I have said before, in my mind, I wish that this would all be over and I could just pick my son up and take him home, but I know that God has us here for a reason and that He will allow us to move past "this place" in our lives only when His purpose has been fulfilled. Please pray that Travis and I will be sensative to the Holy Spirit so that we can be obedient servants while we are here.

Love, thanksgiving and blessings to you all!
Betsy, Travis, Jack & Ned

Monday, February 4, 2008

Just a Waiting Game

I have returned to Chapel Hill after a wonderful day trip to Cherryville to see the family. I have never been so thankful to be at home in my entire life! I had a wonderful day with Jack and Margaret, and a really difficult time leaving again this morning. I got to sleep with each of them for one night and I was so reminded of the wonderful blessings God has already given me. I woke up often in the night and just thanked the Lord for the opportunity to be there loving on my babes and I'm just so looking forward to when little Ned can be curled up in there with us! Jack was completely full of himself, as usual! He kept thanking me for the UNC football uniform and telling me how much he missed and loved me. He also woke up about 3am Saturday night telling me that he needed a piano and a tuba to go along with his drums and guitar? I told him I wasn't sure that we could find a child's tuba anywhere, but I'd be on the lookout. Margaret took me on a grand tour of the new WalMart.....she is completely taken with having one so close. She caught me up on everything that was going on at school and in her world. I feel like I've missed so much, but she filled me with info for hours on Saturday night while we ran some errands.

Little Ned is pretty much the same....he has remained stable, and they haven't attempted to wean him off of any of his many medications or the jet vent. He received some blood this afternoon which made a huge difference in his color and blood pressures. The cardiac surgeon came by this afternoon. I asked him for clarification regarding the statistics he had given me earlier regarding the risk of Ned's heart surgery. He basically told me that Ned's procedure, given his condition, would have about a 20%-25% mortality risk. Something about hearing the potential for death for my 14-day-old son caused me some anxiety this afternoon, but when I remembered that they had also told me that he had a 40% chance of survival after diagnosing his CDH, I decided to put him back in God's hands where he has been so well taken care of so far. His surgery has been postponed until at least Thursday. They are working on getting Ned's swelling down in a slow and steady manner; then, they will start weaning him off the jet vent.

When I left the hospital on Saturday, before going home, I felt like that voice of accusation was in my ear again taunting me about the power of prayer.....like, some people get well and they never pray....do you think your prayers make a difference in Ned's condition? But before I could clearly respond, the Lord said to me, "Betsy, don't let these fears consume you because this battle is already won." The truth is that I believe I follow and put my trust in a soverign God. He does what his best for his children, all of his children. I can't begin to understand all His ways, nor will I question them. I'm not sure how He works all the time, but I'm certain that He always works and He always works for good. I also know beyond a shadow of a doubt that if I hadn't placed my son in His care and if I and so many others weren't praying for Ned, I would have missed such blessing in my life. I would have missed an opportunity to see God as very near and real in my life. I have learned so much through my son's very short existance and I can only hope that in the rest of my life, I can allow my presence here on this Earth to make the impact for Christ that Ned has made in two weeks.

I am also asking everyone to pray for Dr. Bob Stewert. I believe he is the heart surgeon who will be performing Ned's heart repair. He is very established doctor and we are fortunate to receive his care, but there is something a bit distant about him. Neither Travis or I could exactly place what it was, but we just feel like he may be in need of some prayer right now?

Thank you all for your continued support and prayer!!!! Much love to you all!

Betsy, Travis, Jack & Ned

Sunday, February 3, 2008

Not Much To Report

Tonight I am thanking our Lord and Savior that he has kept Ned stable this weekend in preparation for his next surgery (aorta coarctation repair) this coming week. Betsy was able to go home Saturday afternoon to spend some much needed, much appreciated time with Jacker and Margaret, and hopefully get some rest of her own. She was happy to report to me that Jack ran around all weekend with his full UNC football uniform on shouting "Now I'm a reall Tarheel". I sure have some ground to make up with him! Betsy will return to Chapel Hill Monday morning. Normally, Betsy would make absolutely sure she was confident in leaving me with the kiddos if she ever went out of town or anything, but she seemed to be alright with fact that Ned and I wouldn't be getting into much mischief in her absence.

The doctors and nurses are saying they are going to try and start weining him off the jet vent tomorrow morning, so we'll see how that goes. At this time, we are praying that the transition to the regular vent will go smoothly, and that God will have his mighty hand on Ned, the doctors and nurses, and us while they prepare to fix Ned's aorta this coming week. It has been a rocky week, but God has blessed us with a smooth weekend. Ned is still swollen, but it seems to be subsiding some. He has been taking in much more fluids that he has been urinating out since last Thursday (hence the swelling), but this morning, he started urinating out much more than he was taking in, so hopefully, he will continue to loose some of that excess fluid in his tissue.

Overall, the weekend has been pretty uneventful (thank you Lord), except for Ned's many visitors. Aunt Kim Beam and Tammy Hefner showed up around lunch, as did Nana and Paw-paw Bill (Travis's parents), and got to see our little bundle of joy. Later this afternoon, Uncle Mark and Aunt Dawn Beam also came up. Visiting with all these wonderful people sure did make our weekend while we were both missing Betsy.

Anyway, it's late and I'm going to bed. Please keep Ned in your prayers, as well as Betsy as she travels back up to Chapel Hill on Monday morning. Again, thank you all for all you do. The cards, visits, and most of all prayers mean the world to us.

In Christ,


Saturday, February 2, 2008

Staying the Course

As of today and tonight, Ned is staying the course. Betsy and I are in awe and humbled by God's work through our little family. After switching him to the jet vent and playing with his medications a little, Ned has continued to be stable today. They tried to wein him down on the jet vent some last night, but he let them know real quick he wasn't prepared for that, so they put the settings back. We are thanking our awesome God that he has stayed stable today. They did take him off the paralytic drug they had him on so he wouldn't move around and drop his stats, and he has been able to do without it so far. They said it would take some time to completely get out of his system, so he really hasn't moved a whole lot yet. He is still swollen, but he is urinating more and more frequently now, so hopefully, he will be able to shed some of the excess fluid. Betsy was going to go home to see Jack and Margaret and her family Friday afternoon, but the doctors said if it was them, they would not go that far away, so of course Betsy stayed. The doctors did say this afternoon though, that they felt confident he was stabilized, so Betsy headed for C-ville for the night to see Jack and Margaret, and even went bearing gifts. She took Margaretta some clothes, and much to my objection, took Jack a UNC football helmet with the full shoulder pads and jersey with his name on it. I can partially thank Sarah Fowler for that, thanks alot! Betsy said he was running around saying he's a real tarheel now. Great. I think I'll make a trip to Durham one of these days and get the kid some real gear (maybe not football gear!) myself. Ned and I just hung out this afternoon, and watched some of the Duke/Miami game. Everytime Duke hit a three, he threw his arms up over his head, so I think he's a Duke fan. OK, I just made that up. I guess I'll have a little more work to do on Jack.

Anyway, we just continue to thank God for each and every one of the miracles that He is performing in Ned's life each day. Although we can't wait to get these surgeries over and take this little guy home, we are content in the fact that this is God's plan, God's timing, God's glory. We take comfort in the fact that there are bigger, stronger, more healing arms holding Ned when we can't. We are thankful for the nurses, doctors, and surgeons that the Lord has placed in our path right now, and your prayers for them as well as Ned and our family are greatly appreciated.

In Christ,

Travis, Betsy, Jack and Ned

Friday, February 1, 2008

Answer To Specific Prayer

Betsy and I just returned from the hospital for the night. It really seems like God knows just when to pick you back up. After we left this afternoon, we were both honestly terrified, but before eating supper, we just prayed that God would strengthen us to endure whatever situation we would face upon returning to Ned's room, and we specifically prayed for him to stabilize tonight. We came into this knowing there would be some complications, and that it could very well be a roller-coaster ride; however, since Ned's birth, until yesterday, everything went pretty smoothly (Thank you Lord). I think we got spoiled into thinking that we may not have to face such complications? When we returned to his room, the nurses and doctors informed us than he seems to like the new jet vent he is on, and that his stats had been pretty even, not up and down like this morning and afternoon. It was such a blessing to walk back into that room and know that God had been there, and was still there with him, even in our little "break". He knows just what we need and He is showing us that He responds to our prayers (and He is loving all the other prayers we are receiving on Ned's behalf)!!!

I still don't know what God has in store for us, and how long this ride in the hospital will last, but I just keep telling myself "His time, not mine". I continuously pray, "OK Lord, we're done here, let's get him fixed and get him home." I guess for right now, he's saying, "Not yet, but I do love you, and this is for your own good." That's pretty much all I have right now, as we are going to try to get in the bed a little "early" tonight. It's funny how three weeks ago, "early" to bed for us was 8:00pm, and now it's midnight! Anyway, thank you all for your endless prayers and support you have given to us. From driving 3 hours to come up here, to praying diligently, to offering to bring up clothes, to doing anything on the house we're so close to finishing at home, we both really appreciate you all greatly. Please continue to lift Ned, Betsy, Jack, me and the rest of our families up in prayer. They are surely felt up here in Chapel Hill.

In Christ,

Travis, Betsy, Jack and Ned