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

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

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

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!!

Love,
Besty, Travis, Jack & Ned

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!

"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!