The cardiac team performed Ned's heart cath today to determine whether his aorta was interrputed or narrowed. They just came in and let us know that it was a narrowing of the heart which reduced the riskiness of the surgery from like a 9.8 to a 5.5 on a scale of 0-10. I'm not exactly sure how those numbers correlate, like if that means he has a 50.0% chance of surviving the surgery or a 50.5% chance of the surgery going off without a hitch. The surgeon used the word "risky" and I'll have to ask for clarification when they come back by. The good news is that the aorta isn't interrupted so they won't have to put Ned on the heart/lung bypass machine prior to beginning surgery. What an answer to prayer. I was prepared for Ned to need the ECMO machine before he was born because they had really prepared me for that, but since he has so easily been able to avoid it (thank you precious Lord), now I can't stand the thought of him needing that. As we stand, God continues to be our rock and answer my little prayers among the big one (healing, of course). They will keep ECMO available during surgery in the event that his lungs can't sustain, but I'm believing that God will continue to allow Ned's little life to be a miracle to all around him.
They have just brought Ned back to the room. He did well during the cath except for an increased, heart rythm which they quickly corrected with medication. We're still not sure when his surgery would be. It will most likely be scheduled for next week, but they could potentially perform it tomorrow? Please be praying that God will miraculously heal Ned's little heart and safely guide him through this surgery as He did the last time. I just pray that God will continue to hover around Ned wherever he is and that through this, God's awesome healing power will be revealed to many. I am just thanking Him for how far he has brought us and how many blessings He has already bestowed on our lives. While it's difficult to imagine now, I'm sure that one day I'll be glad I was chosen by God to have this experience to learn how to really appreciate the blessings and precious people God has placed in our lives, as well as, learn how to draw really near to Him at all times so that during the difficult times, He is already very close by.
Thank you for all your diligent prayers for little Ned. Your dedication to my child inspires and uplifts me daily!
Betsy, Travis, Jack & Ned
Thursday, January 31, 2008
Wednesday, January 30, 2008
Difficult Day
Well, today has been a struggle. I expect to keep this entry pretty short since I can't hold my eyes open, but I need the prayer for certain right now. Last night, I prayed that God would ordain the schedule for Ned's surgery and his journey home. I prayed that the details of how and when tests and procedures were performed would be a direct reflection of his perfect will for little Ned. So this morning, when I arrived at the hospital, the doctors let me know that they had cancelled the dye test on his heart for today and rescheduled for tomorrow. I felt really good about that change and felt certain that God had made that decision just as I had asked him.
Then, when I returned from lunch, the nurse informed me that they had decided to move Ned to the pediactric intensive care unit. Again, I could trust that God was making changes to the original plan to see if I could continue to trust in Him completely. After Ned was transferred, I went to visit with him in his room. It is a completely different enviornment down there. There were so many sick children from Ned's age to like 17. These children have severe defects and problems that can only be managed not cured. When I got to Ned's room and he was getting settled in, he started "silent crying" meaning that he looks like he is screaming and crying but no volume. It is completely pitiful and it breaks my heart. The doctors down in the PICU ordered him a new sedation medicine.....it didn't go very will. Ned didn't take well to the new medicine and his blook pressue dropped pretty low and it took about 2 hours to get it back up to the low side of normal. It was terrifying, not to mention I wasn't familiar with the enviornment, doctors and nursing staff. When I came back to the house about 30 minues ago, his blood pressure was on the rise, but I still had a really difficult time leaving him. I have been so upset by all the changes that Travis is heading back up here right now....a day early. I hated leaving Ned in a big crib and a room all to himself tonight. I know it's just and enviornmental change and that God is just as present in that room as the NICU, but the whole experience tonight left me completely drained. On the bright side, my weaknesses were more evident to me than ever so it was somewhat easy for me to lay my son back in the hands of the Lord as I left the hospital. I was again shown how very incapable I am of taking care of his without God's provision.
Please keep this move in your prayers and that I will find comfort in our new place! I'm sure I'll feel fine about them once a little time passes, but at the moment I'm really missing the NICU doctors, nurses and staff. I'll write more tomorrow when I can think.....too exhausted tonight (I'll also post pictures of Ned in the crib....it makes him look tiny). Love to you all.....
Betsy
Then, when I returned from lunch, the nurse informed me that they had decided to move Ned to the pediactric intensive care unit. Again, I could trust that God was making changes to the original plan to see if I could continue to trust in Him completely. After Ned was transferred, I went to visit with him in his room. It is a completely different enviornment down there. There were so many sick children from Ned's age to like 17. These children have severe defects and problems that can only be managed not cured. When I got to Ned's room and he was getting settled in, he started "silent crying" meaning that he looks like he is screaming and crying but no volume. It is completely pitiful and it breaks my heart. The doctors down in the PICU ordered him a new sedation medicine.....it didn't go very will. Ned didn't take well to the new medicine and his blook pressue dropped pretty low and it took about 2 hours to get it back up to the low side of normal. It was terrifying, not to mention I wasn't familiar with the enviornment, doctors and nursing staff. When I came back to the house about 30 minues ago, his blood pressure was on the rise, but I still had a really difficult time leaving him. I have been so upset by all the changes that Travis is heading back up here right now....a day early. I hated leaving Ned in a big crib and a room all to himself tonight. I know it's just and enviornmental change and that God is just as present in that room as the NICU, but the whole experience tonight left me completely drained. On the bright side, my weaknesses were more evident to me than ever so it was somewhat easy for me to lay my son back in the hands of the Lord as I left the hospital. I was again shown how very incapable I am of taking care of his without God's provision.
Please keep this move in your prayers and that I will find comfort in our new place! I'm sure I'll feel fine about them once a little time passes, but at the moment I'm really missing the NICU doctors, nurses and staff. I'll write more tomorrow when I can think.....too exhausted tonight (I'll also post pictures of Ned in the crib....it makes him look tiny). Love to you all.....
Betsy
Monday, January 28, 2008
I must confess....
Before I give any updates on Ned this morning, I need to share with everyone where I am spiritually so that I can get this small voice out of the back of my head. I have struggled the past two days, not with my faith, but with my endurance. I suppose that with Travis leaving and things going so well with Ned, I have just been put in a place where I feel very afraid of the next step. I feel like in order to move forward, I am walking a very narrow path and I fear slipping and failing in a way that will reflect poorly on God. I have to line out what it is that is going on within me spiritually so I can be clear that my shortcomings are in no was a reflection of what God can do in my life.
For the past two days, I have felt extremely burdened by the amounts of emails I have received thanking me and praising me for my faith. While I am completely humbled by them, the amount of responsibility I feel because of them has been overwhelming. I am less concerned about faltering in front of people who know me, but the thought that someone may interpret my weakness as a weakness of God is really weighing on me. All day yesterday, I had a voice in my head throwing every possible fear at me. I have to put all this on the table so I can move forward confidently following God. I believe that Ned's situation has really sparked people to sincerely and earnestly pray and bring themselves before His throne and it is for that reason that I think I feel so threatened.
The fears that burdened me yesterday ranged from thoughts that 'just because Ned has done this well so far, doesn't mean that you're bringing him home' to thinking about how I couldn't stay here at the Ronald McDonald house and clean-up if I knew Ned wasn't going to be with me. I fear that if his condition severely worsens or if my worst nightmare comes to pass that I won't be able to find God's purpose in it and I won't have anything left to share from His word. And that if I can't find my way, all that I have said and posted up to this point will seem fraudulent and phoney. So I am saying this now, regardless of path down which the Lord leads our family, Travis and I will continue to believe in, worship and praise our almighty God. We choose to build our home on the firm foundation of God and in that safe dwelling we will seek comfort and refuge. Please continue to pray that I will be able to keep my eyes firmly focused on Jesus and that in the light of His glory, my fears will be relieved.
Now that I have gotten that off my chest, little Ned is doing well. We received his genetic test results back today.....completely normal- Praise God!! The doctors are still wanting to do a more in-depth analysis becuase he had several anomolies, but I feel completely assured that he is fine. In fact, one of the reasons they mentioned this morning that they were seeking further testing was that they said he didn't have a spleen (according to an ultrasound). But, the surgeon had mentioned to Travis and I that Ned's spleen looked completely normal when he put it back in place during his hernia repair. I guess that just hadn't made it into the paper file so they said they would confirm that with Dr. Adamson and would basically ignore the ultrasound report concerning that.
They are working him down on his vent settings in hopes of having him back on the conventional vent by Wednesday. The cardiologist would like to perform a little procedure where they will insert dye into his heart so they can get a better look at his aorta to make some determinations about surgery. I suppose we'll have a better idea about a timeframe for the heart surgery following that procedure on Wednesday.
Otherwise, he has been doing great! They have had to increase his sedation medications a bit because he's such a little fighter that he continually tries to breathe over the vent and yesterday when I visited, he continually tried to open his eyes and look for me. He was also having the hiccups. I was afraid that the hiccups would cause his patch to tear and I hated the fact that he seems to be trying to find me. It makes me feel like he is hurting or uncomfortable because he seems so unsettled. When I was talking to him yesterday afternoon I just kept saying, "just rest in the fact that I'm here and I'll always be right here....you don't have to see me." It hurt my heart to see him agitated. The nurses assured me that he wasn't in any pain or his heart rate would have been increasing. I layed my hands on Ned's little body and asked God that if there was to be pain and suffering in this journey, please let me endure it all. I can't bear the thought of Ned having to be in pain or feel afraid or abandoned. I know how terribly that hurt my heart and I thought so much of how Jesus must have felt as he faced the cross. His love for each of us was so tremendous and sacrificial that he couldn't bear the thought of any of us having to endure such pain and suffering so He willingly endured it for us.
That's basically it for now. I'm heading back to the hospital to sit with Ned and see if they have gotten the results from the ultrasound of his head or his chest x-ray yet. I will keep everyone posted. I appreciate your prayers and don't know how or if I could begin to handle this without them. I heard a sermon online today which really spoke to my current situation. Here's the link:
http://www.elevationchurch.org/media/player.php
(Then click on "The Method and the madness of God") It's a great sermon about the way God works in our lives and through us. It gave me great reassurance.
I love you all!
Betsy, Travis, Jack & Ned
For the past two days, I have felt extremely burdened by the amounts of emails I have received thanking me and praising me for my faith. While I am completely humbled by them, the amount of responsibility I feel because of them has been overwhelming. I am less concerned about faltering in front of people who know me, but the thought that someone may interpret my weakness as a weakness of God is really weighing on me. All day yesterday, I had a voice in my head throwing every possible fear at me. I have to put all this on the table so I can move forward confidently following God. I believe that Ned's situation has really sparked people to sincerely and earnestly pray and bring themselves before His throne and it is for that reason that I think I feel so threatened.
The fears that burdened me yesterday ranged from thoughts that 'just because Ned has done this well so far, doesn't mean that you're bringing him home' to thinking about how I couldn't stay here at the Ronald McDonald house and clean-up if I knew Ned wasn't going to be with me. I fear that if his condition severely worsens or if my worst nightmare comes to pass that I won't be able to find God's purpose in it and I won't have anything left to share from His word. And that if I can't find my way, all that I have said and posted up to this point will seem fraudulent and phoney. So I am saying this now, regardless of path down which the Lord leads our family, Travis and I will continue to believe in, worship and praise our almighty God. We choose to build our home on the firm foundation of God and in that safe dwelling we will seek comfort and refuge. Please continue to pray that I will be able to keep my eyes firmly focused on Jesus and that in the light of His glory, my fears will be relieved.
Now that I have gotten that off my chest, little Ned is doing well. We received his genetic test results back today.....completely normal- Praise God!! The doctors are still wanting to do a more in-depth analysis becuase he had several anomolies, but I feel completely assured that he is fine. In fact, one of the reasons they mentioned this morning that they were seeking further testing was that they said he didn't have a spleen (according to an ultrasound). But, the surgeon had mentioned to Travis and I that Ned's spleen looked completely normal when he put it back in place during his hernia repair. I guess that just hadn't made it into the paper file so they said they would confirm that with Dr. Adamson and would basically ignore the ultrasound report concerning that.
They are working him down on his vent settings in hopes of having him back on the conventional vent by Wednesday. The cardiologist would like to perform a little procedure where they will insert dye into his heart so they can get a better look at his aorta to make some determinations about surgery. I suppose we'll have a better idea about a timeframe for the heart surgery following that procedure on Wednesday.
Otherwise, he has been doing great! They have had to increase his sedation medications a bit because he's such a little fighter that he continually tries to breathe over the vent and yesterday when I visited, he continually tried to open his eyes and look for me. He was also having the hiccups. I was afraid that the hiccups would cause his patch to tear and I hated the fact that he seems to be trying to find me. It makes me feel like he is hurting or uncomfortable because he seems so unsettled. When I was talking to him yesterday afternoon I just kept saying, "just rest in the fact that I'm here and I'll always be right here....you don't have to see me." It hurt my heart to see him agitated. The nurses assured me that he wasn't in any pain or his heart rate would have been increasing. I layed my hands on Ned's little body and asked God that if there was to be pain and suffering in this journey, please let me endure it all. I can't bear the thought of Ned having to be in pain or feel afraid or abandoned. I know how terribly that hurt my heart and I thought so much of how Jesus must have felt as he faced the cross. His love for each of us was so tremendous and sacrificial that he couldn't bear the thought of any of us having to endure such pain and suffering so He willingly endured it for us.
That's basically it for now. I'm heading back to the hospital to sit with Ned and see if they have gotten the results from the ultrasound of his head or his chest x-ray yet. I will keep everyone posted. I appreciate your prayers and don't know how or if I could begin to handle this without them. I heard a sermon online today which really spoke to my current situation. Here's the link:
http://www.elevationchurch.org/media/player.php
(Then click on "The Method and the madness of God") It's a great sermon about the way God works in our lives and through us. It gave me great reassurance.
I love you all!
Betsy, Travis, Jack & Ned
Sunday, January 27, 2008
Travis heading back to C-ville for a few days
Betsy just left me at the Ronald McDonald House to go see Ned and meet her college roommate at the hospital to let her see Ned. I am getting ready to pack just a few things up as I am going to return to Charlotte tomorrow morning to go back to work for a few days, then will join her at the hospital to see him before I leave for a few days. Ned is still stable, and the great doctors here at UNC can't really tell us when the heart surgery will be yet, and Betsy has convinced me that she will be OK here for a few days without me hovering over her, trying to carry her bags, and drive her around. It really pains me, and scares me, to leave, but my vacation time at work will probably be put to better use a little further down the road. Work has given me pretty much all the unpaid time off I need, but everyone knows how that could turn out! While Betsy and Jack went to bed last night, I stayed up and did some laundry here at RMH (b/c all my Duke shirts were dirty!), and chose to do some Bible study and reading as opposed to zoning out in front of the TV in the den here. Isn't it such a blessing when we give our time back to God! I'll have to say my prayer life has really come a long way since all this started. He reminds me again and again that he will do whatever I will allow Him to do. Anyway, Christ really spoke to me during that time, and I wanted to pass along some scripture he directed me to while I was studying and praying. It was so strange because one of these scriptures I have had posted on my monitor at work for years, and I pretty much read the words every day, but I REALLY read them last night. I was sitting at the table in the kitchen at RMH just flipping through the Bible thinking should I read ahead of my Saturday morning Bible study in Genesis?, or should I finish where I left off in Job?, or should I read this or that, and God pointed me to Isaiah. I read the first 8 chapters, where God is really warning them of the things to come, and how wicked they had ended up being. I started feeling like, God, I know I've sinned in my life, and I'm still sinning even today, please don't hold that against little Ned. I ended up in chapters 40, 41, and this is what I ended up claiming for my SONS. My prayer is that it will comfort those of you reading this with what ever is going on in your life, as much as it has comforted me. Isaiah 40:31 says "But those who wait on the Lord will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk, and not faint." I could just imagine how I will feel when the good Lord finally allows us to bring that little boy home, and how I will feel when he and Jack and Margaret are finally together and probably fighting like siblings do. Even though we all sin and fall short of what He wants us to be doing, he forgives and forgets, and is ready to bless us so powerfully if we will only let him. The next verse I claimed for Ned is Isaiah 41:9-10 that says "I have called you back from the ends of the earth so you can SERVE ME. For I have CHOSEN YOU and will not throw you away. Don't be afraid, for I am with you. Do not be dismayed, for I am your God. I will strengthen you, I will help you. I will uphold you with my victorious right hand." These words from God are going to be plenty to allow me to be at peace with leaving my wife and child here. Plus, He has already blessed us with Jack waiting for me at home, and so many family and friends.
I just want to say the most sincere thank you I can to all of you for your emails, comments on this blog, and phone calls. Sometimes I feel like Betsy and I are fighting to see who can be the first one at the laptop when we return from the hospital to see all the comments and emails you guys are sending. God has also blessed us with so many family and friends that actually live right here in Chapel Hill, Durham, and Raleigh, and I want to say thank you to ya'll too, for making us really feel like we can call on you for a meal together, a chat, a visit, or even a place to sleep at night. Thank you, thank you, thank you.
I'm going to quit now. Betsy will be back to confiscate her laptop from me, and I'm sure post another blog to update everyone on Ned's status, and post her own highlights from her time with our Lord. Please continue to pray for our little boy, Jack, and Betsy, as well as for Robin, Greg, and Margaret, Linda and Billy, who have also turned their lives upside down to help us. Who knows, maybe we'll be finished with our house soon, and we'll have somewhere to bring little Ned home to!
In Christ,
Travis D.
I just want to say the most sincere thank you I can to all of you for your emails, comments on this blog, and phone calls. Sometimes I feel like Betsy and I are fighting to see who can be the first one at the laptop when we return from the hospital to see all the comments and emails you guys are sending. God has also blessed us with so many family and friends that actually live right here in Chapel Hill, Durham, and Raleigh, and I want to say thank you to ya'll too, for making us really feel like we can call on you for a meal together, a chat, a visit, or even a place to sleep at night. Thank you, thank you, thank you.
I'm going to quit now. Betsy will be back to confiscate her laptop from me, and I'm sure post another blog to update everyone on Ned's status, and post her own highlights from her time with our Lord. Please continue to pray for our little boy, Jack, and Betsy, as well as for Robin, Greg, and Margaret, Linda and Billy, who have also turned their lives upside down to help us. Who knows, maybe we'll be finished with our house soon, and we'll have somewhere to bring little Ned home to!
In Christ,
Travis D.
Saturday, January 26, 2008
After Much Delay....
I apologize for the time delay between the last post and this one. I typically try to post at least once a night, but Jack was up here with us last night and that kinda threw a wrench in things.
Ned is still doing very well. They believe he will be completely off all of his blood pressure medications by this afternoon. He is tolerating the medication decreases really well so we've been very blessed by not seeing any major changes in his stats in the past two days following his surgery. The neonatologists thought they saw a bit of bowel back up in the chest cavity which would mean that his diaphram patch had come loose, but the surgical team has looked at the x-ray and firmly believe it is the angle of the x-ray itself. They seem very sure that there is no way the patch has been compromised as they felt they had plenty of tissue to which it was adhered. They will continue to monitor it to be sure, but I'm just praying that this will prove to be a non-issue because that would mean another hernia repair surgery. Please keep this in your prayers.
They said this afternoon that they expect that the cardiologist will perform Ned's heart surgery either next week or the next. They are still waiting to perform another echocardiogram to look at his heart now that all his stomach contents are out of the way. There is some chance that the aorta may be seperated rather than just a narrowing which would make the surgery a little more complex. Dr. Adamson (the pediactric surgeon) doesn't think that is the case and we're basically hoping that the less invasive heart repair will be an option.
Now that Ned has gone through his first surgery, he is much less sensative to light and sound. I can now go in and talk to him without causing his blood pressures to drop dramatically. Yesterday, while I was visiting, I was singing to him and the Lord really revealed something to me. I was singing:
Lord, you are, more precious than silver,
Lord, you are, more costly than gold,
Lord, you are, more beautiful than diamonds,
and nothing I desire compares with you.
For some reason, the end of that song really hasn't ever resonated with me, but I am coming to an understanding that getting what I want from God isn't nearly the blessing as getting closer to God and gaining a better understanding of his character.
We also met with the geneticist yesterday who wanted to look at all the congenital defects to decide whether or not she thought they were indicators of a much larger genetic disorder of some sort. After going through our history, she said she didn't see any markers for a major disorder that could make it impossible for Ned to recover from the defects we are now aware of. She couldn't be sure that he wouldn't have something that may cause him to be developmentally behind, but that isn't my concern. I understand that I will praise God to be allowed to raise Ned with whatever gifts He has blessed him with. So, for me, just knowing that there wasn't some major disorder that was going to make survival basically impossible for him was a HUGE blessing for me!
Several months ago, God revealed to me an application for a verse that made so much sense to me and has helped me so much through thinking about both Ned's repair and the general disarray our family is experiencing. Jack's behavior is terrible....I guess everything in his world is completely upside-down and he's really pushing his limits and being as ugly as he knows to be. I feel really guilty about leaving him to cope with all of this on his own. But there is a verse in Revelations (I'll look it up later and give it to you, but my computer is really slow right now) that talks about how God stores up our prayers and they are like incense to Him. I always thought that was such a strange concept, but as Jack got older, I understood more. When he would be playing and tearing his toys apart, I would notice him trying unsuccessfully to put them back together. I knew he would eventually get frustrated and bring them to be completely distraught and crying. But, I loved that he knew I could and would fix it for him. I loved that he trusted me to fix his most overwhelming problems. And what seemed huge to him in his world with his little understanding, was a simple task for me to correct for him. I think that is why our prayers so please God, fixing them for us is an easy task and he loves to help us in our time of distress knowing that we have brought our biggest concerns to His throne believing He can and will fix them. So today, I know that God can not only repair Ned's little body, but he can also easily help Jack and Margaret find some comfort, peace, and normalcy in our new, chaotic environment. I'm taking comfort in that today.
That's all I have for now. Everyone's prayers and emails have been so uplifting and the amout of support and love we have received has been tremendous to say the least. Travis and I are completely humbled that so many people have prayed in earnest for our child. Individuals, groups and entire churches whom we have never met have contacted us to let us know that they are fervently praying for our little Ned. I thought this little website would help some people know what was going on with him, but I never could have dreamed that God would use it in the ways that He has....ways only He can. As always, He gives us more that we need or expect and all his for His glory. I have received lots of emails concerning my faith and I just want to say that my faith has been made strong because God has shown Himself so clearly and that it was in my humanity and weakness that He was able to be so mighty in my life. He has planned all the days of my life and how He has chosen to work in my life is in no way an indicator of anything I could ever be outside of Him. I will tell you all soon how and when he started preparing me for this journey....looking back it is all so very clear to me now, but I believe I'll have to wait till tomorrow. Some of my Sunday school class is here to see Ned and I need to go meet them....how blessed am I that a group of college kids would drive 3 hours to come look upon my child for whom they have all prayed! God is so good!
Betsy, Travis, Jack & Ned
Ned is still doing very well. They believe he will be completely off all of his blood pressure medications by this afternoon. He is tolerating the medication decreases really well so we've been very blessed by not seeing any major changes in his stats in the past two days following his surgery. The neonatologists thought they saw a bit of bowel back up in the chest cavity which would mean that his diaphram patch had come loose, but the surgical team has looked at the x-ray and firmly believe it is the angle of the x-ray itself. They seem very sure that there is no way the patch has been compromised as they felt they had plenty of tissue to which it was adhered. They will continue to monitor it to be sure, but I'm just praying that this will prove to be a non-issue because that would mean another hernia repair surgery. Please keep this in your prayers.
They said this afternoon that they expect that the cardiologist will perform Ned's heart surgery either next week or the next. They are still waiting to perform another echocardiogram to look at his heart now that all his stomach contents are out of the way. There is some chance that the aorta may be seperated rather than just a narrowing which would make the surgery a little more complex. Dr. Adamson (the pediactric surgeon) doesn't think that is the case and we're basically hoping that the less invasive heart repair will be an option.
Now that Ned has gone through his first surgery, he is much less sensative to light and sound. I can now go in and talk to him without causing his blood pressures to drop dramatically. Yesterday, while I was visiting, I was singing to him and the Lord really revealed something to me. I was singing:
Lord, you are, more precious than silver,
Lord, you are, more costly than gold,
Lord, you are, more beautiful than diamonds,
and nothing I desire compares with you.
For some reason, the end of that song really hasn't ever resonated with me, but I am coming to an understanding that getting what I want from God isn't nearly the blessing as getting closer to God and gaining a better understanding of his character.
We also met with the geneticist yesterday who wanted to look at all the congenital defects to decide whether or not she thought they were indicators of a much larger genetic disorder of some sort. After going through our history, she said she didn't see any markers for a major disorder that could make it impossible for Ned to recover from the defects we are now aware of. She couldn't be sure that he wouldn't have something that may cause him to be developmentally behind, but that isn't my concern. I understand that I will praise God to be allowed to raise Ned with whatever gifts He has blessed him with. So, for me, just knowing that there wasn't some major disorder that was going to make survival basically impossible for him was a HUGE blessing for me!
Several months ago, God revealed to me an application for a verse that made so much sense to me and has helped me so much through thinking about both Ned's repair and the general disarray our family is experiencing. Jack's behavior is terrible....I guess everything in his world is completely upside-down and he's really pushing his limits and being as ugly as he knows to be. I feel really guilty about leaving him to cope with all of this on his own. But there is a verse in Revelations (I'll look it up later and give it to you, but my computer is really slow right now) that talks about how God stores up our prayers and they are like incense to Him. I always thought that was such a strange concept, but as Jack got older, I understood more. When he would be playing and tearing his toys apart, I would notice him trying unsuccessfully to put them back together. I knew he would eventually get frustrated and bring them to be completely distraught and crying. But, I loved that he knew I could and would fix it for him. I loved that he trusted me to fix his most overwhelming problems. And what seemed huge to him in his world with his little understanding, was a simple task for me to correct for him. I think that is why our prayers so please God, fixing them for us is an easy task and he loves to help us in our time of distress knowing that we have brought our biggest concerns to His throne believing He can and will fix them. So today, I know that God can not only repair Ned's little body, but he can also easily help Jack and Margaret find some comfort, peace, and normalcy in our new, chaotic environment. I'm taking comfort in that today.
That's all I have for now. Everyone's prayers and emails have been so uplifting and the amout of support and love we have received has been tremendous to say the least. Travis and I are completely humbled that so many people have prayed in earnest for our child. Individuals, groups and entire churches whom we have never met have contacted us to let us know that they are fervently praying for our little Ned. I thought this little website would help some people know what was going on with him, but I never could have dreamed that God would use it in the ways that He has....ways only He can. As always, He gives us more that we need or expect and all his for His glory. I have received lots of emails concerning my faith and I just want to say that my faith has been made strong because God has shown Himself so clearly and that it was in my humanity and weakness that He was able to be so mighty in my life. He has planned all the days of my life and how He has chosen to work in my life is in no way an indicator of anything I could ever be outside of Him. I will tell you all soon how and when he started preparing me for this journey....looking back it is all so very clear to me now, but I believe I'll have to wait till tomorrow. Some of my Sunday school class is here to see Ned and I need to go meet them....how blessed am I that a group of college kids would drive 3 hours to come look upon my child for whom they have all prayed! God is so good!
Betsy, Travis, Jack & Ned
Thursday, January 24, 2008
One Surgery Down!!!
Okay....this is going to be short and to the point. We have eaten or slept or seen Ned yet so this entry will be straight medical info. Surgery is over and everything went fine. They were able to remove his stomach, spleen, bowel and liver from his chest cavity and put it back where it goes in the abdomen. During the surgery they removed his appendix for extra space and something on his bowel know as a meckel's diverticulum. Quick explanation: All fetus have the meckels diverticulum during the first trimester, but in 2% of the population, it doesn't dissolve. It doesn't inherently cause any probelms, but later in life it can begin to produce acid in the lower bowel where your body is capable of handling such high acids.....so, they removed it. There was also an area of the bowel that had been kinked up since everything had floated out of it's normal position. The area that was kinked had gone without blood flow and after they unkinked it, the tissue never returned to normal. So, they took out that small area (about 2 inches). They didn't sew the two pieces of bowel back together yet due to the complications with doing that while there was swelling the bowel. For now, Ned will have a little ileostomy bag and they will perform another surgery in 6-8 weeks to put that back together. The good news is that the kink was pretty far down on the bowel track and shouldn't affect his ability to digest and intake nutrition!!
They put in the gortex patch and there was actually a little flap of diaphram that was rolled up near his spine which gave them something to sew the patch to in that area which is the most critical part and normally the most likely area to reherniate.....so that little flap was a huge blessing. God held him completely steady during surgery...his vent settings remained the same and he didn't need any blood transfusions so they expect his recovery to pick up where it left off!!!I think that is all for now....or at least the highlights. They are changing out his fluids and doing some x-rays to look at his new anatomy, then we'll be able to go in and see him!
I'll update better in the morning. Thank you all for all your prayers. There has never been a day when I needed them more! Let's just pray that little Ned's lungs will really start to develop and take off. Dr. Adamson said that he had about 50% of his left lung so we're really praying that all his lung will really be able to function and fix all his pressures so he can get off those meds pretty effortlessly. Okay....this was pretty long....love you all!
Betsy, Travis, Jack & Ned
They put in the gortex patch and there was actually a little flap of diaphram that was rolled up near his spine which gave them something to sew the patch to in that area which is the most critical part and normally the most likely area to reherniate.....so that little flap was a huge blessing. God held him completely steady during surgery...his vent settings remained the same and he didn't need any blood transfusions so they expect his recovery to pick up where it left off!!!I think that is all for now....or at least the highlights. They are changing out his fluids and doing some x-rays to look at his new anatomy, then we'll be able to go in and see him!
I'll update better in the morning. Thank you all for all your prayers. There has never been a day when I needed them more! Let's just pray that little Ned's lungs will really start to develop and take off. Dr. Adamson said that he had about 50% of his left lung so we're really praying that all his lung will really be able to function and fix all his pressures so he can get off those meds pretty effortlessly. Okay....this was pretty long....love you all!
Betsy, Travis, Jack & Ned
Little Ned is in surgery
Well, we sent Ned off to his first surgery about 2:30 this afternoon and we expect it to be completed around 8:30. When I say his first surgery that is now because about an hour before they decided to repair his hernia today, the doctors let us know that they think that there is a narrowing in one part of Ned's aorta (which is heart vessel). They expect that it will need surgery as well once he has gotten stabilized following his hernia repair. All of this news was a bit overwhelming for me to be honest. I was already feeling a overwhelmed by the hernia repair today....I really could have waited until we made it through one surgery before we started discussing another. However, I'll have to say, the surgeons and surgical staff here have made us feel as confident and comfortable as possible. I am so tahnkful that God led us to this place to go through this.
For me, today, has been the most frightening part of this journey since his initial diagnosis. I'm not sure why, exactly. It could be partly hormonal, but something about knowing they are taking my son's little body off to cut into it was just difficult for me accept today. It isn't really a fear that God won't protect Ned through the surgery, I guess it's just hard for me to continue to hand him over when he's now here and I can, or could, have my hands on him. Please pray that I will find peace and comfort in the modified version of motherhood I am playing at this time.
Please keep Ned and the surgical staff in your prayers this afternoon. I have gotten somewhat caught up in trying to make sure that I pray for every little detail of the surgery, but the truth is that I don't know enough to try to control the details of the surgery through prayer. So, now I am mostly praying for God's presence to hover in the entire operating room. I have been thinking about how when Jacob was wrestling with God he refused to let go until God blessed him. That's kinda how I feel this afternoon. I am completely exhausted and I want to give into my fears, but I am hanging on to God and refusing to let go and until I receive the blessing of restoring my son.
I'll keep you posted. Love to you all!
Betsy, Travis, Jack & Ned
For me, today, has been the most frightening part of this journey since his initial diagnosis. I'm not sure why, exactly. It could be partly hormonal, but something about knowing they are taking my son's little body off to cut into it was just difficult for me accept today. It isn't really a fear that God won't protect Ned through the surgery, I guess it's just hard for me to continue to hand him over when he's now here and I can, or could, have my hands on him. Please pray that I will find peace and comfort in the modified version of motherhood I am playing at this time.
Please keep Ned and the surgical staff in your prayers this afternoon. I have gotten somewhat caught up in trying to make sure that I pray for every little detail of the surgery, but the truth is that I don't know enough to try to control the details of the surgery through prayer. So, now I am mostly praying for God's presence to hover in the entire operating room. I have been thinking about how when Jacob was wrestling with God he refused to let go until God blessed him. That's kinda how I feel this afternoon. I am completely exhausted and I want to give into my fears, but I am hanging on to God and refusing to let go and until I receive the blessing of restoring my son.
I'll keep you posted. Love to you all!
Betsy, Travis, Jack & Ned
Wednesday, January 23, 2008
Big Day!! Please Pray!!
When we arrived to the NICU this morning, Ned was a little out of sorts. They weren't exactly sure what had caused him to de-stat, but his favorite nurse, Amy, worked diligently to get him back on track. It really hurt my heart to see him so flustered and agitated, but it was quickly resolved.
Shortly thereafter, the NICU took a power hit and all the respirators went dead. The nurse had to run in and swap over to a hand vent for probably a minute and a half. I was completely dumb founded. All I could think was....this shouldn't happen, what is wrong with the backup power systems here and how can I fix it? (For anyone who doesn't know....I sell back-up critical power supplies)!? My mind was completely reeling! Shortly thereafter, during rounds, one of the doctors accidently turned off the overhead light. Needless to say everyone jumped up in a panic.....so it was a little tense to say the least. Very eventful morning.
The doctor's discussion during his morning rounds was pretty much the same as yesterday...which was good. They had basically decided to leave his settings alone. They made very few changes because they were happy with his critical stats. There was an intern who had to give Ned's report this morning in front of all the medical staff and us. I felt terrible for him! I guess that's just how it goes in a teaching hospital, but I can't imagine being called out for diagnosis and treatment procedures in front of such a large group and the baby's parents! He was kinda pitiful, but very kind.
The big shocker came today when we went back down to visit Ned prior to my discharge. We spoke with Dr. Adamson, one of the pediactric surgeons and he said that if Ned remained stable through the night and there weren't any scheduling conflicts, they planned to perform his surgery TOMORROW afternoon with a backup plan for Friday. I felt like I might seriously be sick. I knew surgery was definitely coming and I do want to get past it, but I just had next week in my head and "tomorrow" came very quickly. I'm honestly not prepared for it, but I'm working on it. I just thought I would have more time to get comfortable with the whole situation and to spend more time in God's word studying prior to this move. I feel somewhat disconnected from being in the hospital and going back-and-forth to the NICU. I was really anticipating some downtime where I could get back to a place where I felt like God was guiding me. But, that just may not be the case so I'm planning on overloading on some Bible in-take tonight in hopes that God will show me His direction and give me peace for tomorrow.
We also had some stress when we visited the NICU tonight. They are still planning for surgery tomorrow, but he had some destat issues tonight as well....still the doctors didn't seem concerned. Ned is highly sensitive to noise and too much touching. His night nurse is a little OCD about the tubes. She doesn't want any to be crossed, so when she gets there, she goes through about a 45 minute routine of uncrossing all the wires. There was also another babe who was really unhappy and letting everyone know about it. Between her touching and his crying, Ned let everyone know he had experienced all he could take. Luckily, one of the neonatologist was standing close by and got him right back on track. We got him in some little ear muffs to drown out the noise and he was able to keep his stats up. THEN, you wouldn't believe, but he woke up. I mean, completely awake and responsive. I was so thankful to see his little eyes, but he was clearly not sedated enough considering he had just had the melt-down and was now wiggling around and staring at me. His nurse acted like she wanted to see how he did, but he didn't seem all that excited about having that vent tube down his throat so we of course asked her to quickly sedate him again! It was wonderful to see the life in him and feel the strength in his arms. The doctor on duty tonight said that on a scale for 1-10 (10 being the best), Ned was an 8 considering his condition.....everyone is so shocked by how God has delivered him!
So....tomorrow morning, we'll find out a definite on the surgery. Please be praying for Ned and for Travis and me. I am praying that if tomorrow is not the day God has determined for his surgery, that I won't be disappointed by any setbacks tonight. We just have to keeping trusting the Lord and knowing that His love for us, and Ned, is far greater than our love for Ned......that helps me keep in perspective how precious we are to Him. I am just praying for the surgical team, that their hands will be lead by the great physician and that God will grant them wisdom and discernment concerning my son. I am also continuing to pray that God will make himself known to people through this situation and that Travis and I will continue to make ourselves available to his calling....that we won't get too caught up in the medical aspect of this to a point where we can't hear His still small voice.
Love to you all.....please lift up prayers of miraculous healing!
Betsy, Travis, Jack & Ned
Shortly thereafter, the NICU took a power hit and all the respirators went dead. The nurse had to run in and swap over to a hand vent for probably a minute and a half. I was completely dumb founded. All I could think was....this shouldn't happen, what is wrong with the backup power systems here and how can I fix it? (For anyone who doesn't know....I sell back-up critical power supplies)!? My mind was completely reeling! Shortly thereafter, during rounds, one of the doctors accidently turned off the overhead light. Needless to say everyone jumped up in a panic.....so it was a little tense to say the least. Very eventful morning.
The doctor's discussion during his morning rounds was pretty much the same as yesterday...which was good. They had basically decided to leave his settings alone. They made very few changes because they were happy with his critical stats. There was an intern who had to give Ned's report this morning in front of all the medical staff and us. I felt terrible for him! I guess that's just how it goes in a teaching hospital, but I can't imagine being called out for diagnosis and treatment procedures in front of such a large group and the baby's parents! He was kinda pitiful, but very kind.
The big shocker came today when we went back down to visit Ned prior to my discharge. We spoke with Dr. Adamson, one of the pediactric surgeons and he said that if Ned remained stable through the night and there weren't any scheduling conflicts, they planned to perform his surgery TOMORROW afternoon with a backup plan for Friday. I felt like I might seriously be sick. I knew surgery was definitely coming and I do want to get past it, but I just had next week in my head and "tomorrow" came very quickly. I'm honestly not prepared for it, but I'm working on it. I just thought I would have more time to get comfortable with the whole situation and to spend more time in God's word studying prior to this move. I feel somewhat disconnected from being in the hospital and going back-and-forth to the NICU. I was really anticipating some downtime where I could get back to a place where I felt like God was guiding me. But, that just may not be the case so I'm planning on overloading on some Bible in-take tonight in hopes that God will show me His direction and give me peace for tomorrow.
We also had some stress when we visited the NICU tonight. They are still planning for surgery tomorrow, but he had some destat issues tonight as well....still the doctors didn't seem concerned. Ned is highly sensitive to noise and too much touching. His night nurse is a little OCD about the tubes. She doesn't want any to be crossed, so when she gets there, she goes through about a 45 minute routine of uncrossing all the wires. There was also another babe who was really unhappy and letting everyone know about it. Between her touching and his crying, Ned let everyone know he had experienced all he could take. Luckily, one of the neonatologist was standing close by and got him right back on track. We got him in some little ear muffs to drown out the noise and he was able to keep his stats up. THEN, you wouldn't believe, but he woke up. I mean, completely awake and responsive. I was so thankful to see his little eyes, but he was clearly not sedated enough considering he had just had the melt-down and was now wiggling around and staring at me. His nurse acted like she wanted to see how he did, but he didn't seem all that excited about having that vent tube down his throat so we of course asked her to quickly sedate him again! It was wonderful to see the life in him and feel the strength in his arms. The doctor on duty tonight said that on a scale for 1-10 (10 being the best), Ned was an 8 considering his condition.....everyone is so shocked by how God has delivered him!
So....tomorrow morning, we'll find out a definite on the surgery. Please be praying for Ned and for Travis and me. I am praying that if tomorrow is not the day God has determined for his surgery, that I won't be disappointed by any setbacks tonight. We just have to keeping trusting the Lord and knowing that His love for us, and Ned, is far greater than our love for Ned......that helps me keep in perspective how precious we are to Him. I am just praying for the surgical team, that their hands will be lead by the great physician and that God will grant them wisdom and discernment concerning my son. I am also continuing to pray that God will make himself known to people through this situation and that Travis and I will continue to make ourselves available to his calling....that we won't get too caught up in the medical aspect of this to a point where we can't hear His still small voice.
Love to you all.....please lift up prayers of miraculous healing!
Betsy, Travis, Jack & Ned
Betsy & Travis heading to Ronald McDonald House
Everything with Ned is about the same now. Betsy and I were in the NICU for several hours this morning and sat in on the doctors' round-table discussion of Ned's progress and statistics, and overall, they are still happy with his status right now. It's hard to imagine that he's already 2 days old! God has blessed us with a healthy mother and a sweet baby with positive readings so far. Betsy and I are going to be heading back down to the NICU here shortly, then she will be discharged and we will go to the Ronald McDonald house right beside campus to begin our stay there. We are so thankful for resources like that, and especially for all your prayers so far. Please continue to pray for little Elijah Ned. Betsy will update blog later tonight I'm sure.
God Bless you all,
Travis & Betsy, Jack & Ned
God Bless you all,
Travis & Betsy, Jack & Ned
Tuesday, January 22, 2008
No News is Great News
I am happy to report that there is very little to report! Travis and I went down and joined the NICU staff during doctor's rounds this morning. ALL of the doctors were so impressed with Ned's stability. I was so proud during the meeting to be the mother of the "all-star". They decided to make a couple of changes to his medications: take him off some of the sedation drugs and just tweek a couple other things to really get some of his settings right on target. They also let us know that his little collar bone was broken during birth. I guess it's a good thing that he is on pain medication right now. He shouldn't feel anything and they say it will just heal itself.
Travis was hounded by the doctors for wearing his DUKE shirt to the rounds meeting this morning. I was so embarrassed. They said it could have been worse.....Maryland! I guess I'll have to decorate Ned's bed with UNC paraphanalia to make sure he gets the best care...I don't want them to hold Travis' shortcomings against little Ned.
If he continues to do as well tomorrow, they will start assessing him for surgery. It will be pretty unscheduled. As soon as they think his stats are perfect and stable, surgery will be a go!
We have been blessed to have been prayed for by so many people and entire congregations....people we've never met and may never know until we know them in eternity. Until that time, I thank God for all the time and love other people have poured into our lives.
I told Travis tonight, someone told us that when she prayed for us, she envision Jesus hovering over us and protecting us. I think that is so funny because when I have prayed, I have envisioned myself walking behind Jesus with my face dug in his back...you know, like you would go through a haunted house, clinging to someone else, too afraid to look for yourself. He hasn't led me astray even though I had no idea where he was taking me. He has brought us to a place of real surrender and in that we have found blissful peace.
I'm adding a couple of pictures although I know he hasn't changed much....he's still a cutie!
Travis was hounded by the doctors for wearing his DUKE shirt to the rounds meeting this morning. I was so embarrassed. They said it could have been worse.....Maryland! I guess I'll have to decorate Ned's bed with UNC paraphanalia to make sure he gets the best care...I don't want them to hold Travis' shortcomings against little Ned.
If he continues to do as well tomorrow, they will start assessing him for surgery. It will be pretty unscheduled. As soon as they think his stats are perfect and stable, surgery will be a go!
We have been blessed to have been prayed for by so many people and entire congregations....people we've never met and may never know until we know them in eternity. Until that time, I thank God for all the time and love other people have poured into our lives.
I told Travis tonight, someone told us that when she prayed for us, she envision Jesus hovering over us and protecting us. I think that is so funny because when I have prayed, I have envisioned myself walking behind Jesus with my face dug in his back...you know, like you would go through a haunted house, clinging to someone else, too afraid to look for yourself. He hasn't led me astray even though I had no idea where he was taking me. He has brought us to a place of real surrender and in that we have found blissful peace.
I'm adding a couple of pictures although I know he hasn't changed much....he's still a cutie!
Monday, January 21, 2008
We formally met Ned!!
We finally got to go down to the NICU about 5:30 to see our son.....it was the most long awaited, anticpated introduction of my life. He and I had a brief encounter this afternoon after he was born. We held hands and he refused to let go....another Mama's boy....I love it!!! But tonight, I finally got to tell him some things that I have been thinking about for 6 months. I told him about how God was holding him and caring for him and how blessed he is that the Lord chose him to reveal Himself to others at such an early age. I told him how I had such a difficult time learning this lesson, but he didn't have to fight too hard because God was holding him and his future was secure in Him.
I know Travis let you all know that he cried at birth which for us was amazing (totally God) since they had told us not to expect a cry at all and that he would be blue and may not be able to be intubated at all? BUT, he let out loud belly cries and it blessed my soul. I'm pretty sure I kept saying "Thank you Jesus" out loud in the delivery room. If I had been in a better position, I think I may have gotten up and danced a jig while I said it.....completely unashamed!! He was a very normal 7lbs and I'm not sure of his length, but he looks comepletely proportionate. I have counted each of his beautiful fingers and toes and there aren't any extra or abnormally shaped. Again, it was difficult for me to trust God's provision when so many negative reports kept coming in about his conditions, but God has certainly shown himself today.
So....when we got to the NICU, the doctor on duty gave us a quick update and the first thing he noted about Ned was that he was extremely strong. So strong, in fact, that they had to sedate him tonight because he had pulled out his breathing tube! I was so proud! They also said that they had done lots of testing and his heart showed no anomolies. The doctor went on to tell us that he had a good bit of bowel in his chest. Now while this seemed like he was delivering bad news, he was actually telling me of God's first big miracle for Ned. In response, I asked if he hadn't seen most of his liver in his chest. The doctor said there may be some liver up, but not that much.
WOW.....when we went to the Children's Hospital of Philadelphia, they told us that his stomach was up, his bowel was up and his liver was up. I knew that the liver being up was a worst case senario because the liver is such a dense, hard organ that it really prevents any lung from forming against it, but I could clearly see in the MRI images that at least 3/4 of his liver was in his chest. When we met with the specialist there, I asked if it were "possible" that the liver could descend back into the abdomen. They assured me that it wasn't possible for that to happen.....but, ALL THINGS are possible thru Christ!
So, we went in to see little Ned and he is absolutely beautiful!! Even with all those tubes, he was a living doll! He has a head full of curly blond hair. Right now it's still kinda matted to his head, but once they wash it, I think it will be quite the boufant hair-do. Although he was sedated, he was still repsonsive to my touch and voice.
I have been held by all your prayers in such a supernatural way that I couldn't begin to put into words. Please keep praying that we will continue to place our trust in God's soverignty. I am also praying that God will hold Ned in His arms the entire time that he is alone in his bed and that the Holy Spirit will hover over his little bed filling his little body with the grace and peace that surpasses all understanding. As always, I am praying for complete healing....I put my hands on his little chest and asked God to fix everything and to give the doctors discernment and wisdom. We're also praying that in whatever capacity God chooses to continue to use our family, we will be open and obedient to his direction.
As for his surgery, we don't know what to expect as far as a time-frame. The first 48 hours are considered a honeymoon period. After that, they will want him to be able to remain stable for a time period then they will schedule the surgery. For now, we'll just rest in the place where He has us for the moment.
I love you all so very much. You have sustained us through your prayers and love in Christ!
Betsy, Travis, Jack and Ned
I know Travis let you all know that he cried at birth which for us was amazing (totally God) since they had told us not to expect a cry at all and that he would be blue and may not be able to be intubated at all? BUT, he let out loud belly cries and it blessed my soul. I'm pretty sure I kept saying "Thank you Jesus" out loud in the delivery room. If I had been in a better position, I think I may have gotten up and danced a jig while I said it.....completely unashamed!! He was a very normal 7lbs and I'm not sure of his length, but he looks comepletely proportionate. I have counted each of his beautiful fingers and toes and there aren't any extra or abnormally shaped. Again, it was difficult for me to trust God's provision when so many negative reports kept coming in about his conditions, but God has certainly shown himself today.
So....when we got to the NICU, the doctor on duty gave us a quick update and the first thing he noted about Ned was that he was extremely strong. So strong, in fact, that they had to sedate him tonight because he had pulled out his breathing tube! I was so proud! They also said that they had done lots of testing and his heart showed no anomolies. The doctor went on to tell us that he had a good bit of bowel in his chest. Now while this seemed like he was delivering bad news, he was actually telling me of God's first big miracle for Ned. In response, I asked if he hadn't seen most of his liver in his chest. The doctor said there may be some liver up, but not that much.
WOW.....when we went to the Children's Hospital of Philadelphia, they told us that his stomach was up, his bowel was up and his liver was up. I knew that the liver being up was a worst case senario because the liver is such a dense, hard organ that it really prevents any lung from forming against it, but I could clearly see in the MRI images that at least 3/4 of his liver was in his chest. When we met with the specialist there, I asked if it were "possible" that the liver could descend back into the abdomen. They assured me that it wasn't possible for that to happen.....but, ALL THINGS are possible thru Christ!
So, we went in to see little Ned and he is absolutely beautiful!! Even with all those tubes, he was a living doll! He has a head full of curly blond hair. Right now it's still kinda matted to his head, but once they wash it, I think it will be quite the boufant hair-do. Although he was sedated, he was still repsonsive to my touch and voice.
I have been held by all your prayers in such a supernatural way that I couldn't begin to put into words. Please keep praying that we will continue to place our trust in God's soverignty. I am also praying that God will hold Ned in His arms the entire time that he is alone in his bed and that the Holy Spirit will hover over his little bed filling his little body with the grace and peace that surpasses all understanding. As always, I am praying for complete healing....I put my hands on his little chest and asked God to fix everything and to give the doctors discernment and wisdom. We're also praying that in whatever capacity God chooses to continue to use our family, we will be open and obedient to his direction.
As for his surgery, we don't know what to expect as far as a time-frame. The first 48 hours are considered a honeymoon period. After that, they will want him to be able to remain stable for a time period then they will schedule the surgery. For now, we'll just rest in the place where He has us for the moment.
I love you all so very much. You have sustained us through your prayers and love in Christ!
Betsy, Travis, Jack and Ned
Elijah Ned Dellinger has arrived !!
Elijah Ned was born today at 12:53pm, and the first thing he did was cry! What a blessing it was for us to hear that come from his little mouth! He weighed 7 lbs. even, and looked great. When he was born, they got him intubated successfully, meaning they have a tube in his lungs to assist in his breathing. The immediately took him to the NICU, where they have been working with him since. We hope to be able to see him soon, and get some kind of status soon, but we are just waiting on praying right now. I just wanted to get something on the blog b/c we know people are checking it. I'll update it again as soon as I can.
Travis
Travis
Couple Little Bumps in the Road
Well, we're finally here at UNC hospitals and we've gotten started on this induction. We weren't sure if Travis was going to be able to make it. He had a fever Friday and Saturday night and the hospital staff asked him not to come until he had been fever-free for 24 hours. So....Mom and I drove up this afternoon, but when Travis' fever didn't return this evening, he came on up.
They contemplated putting off my induction until tomorrow night, but decided to move forward. Apparently the NICU is pretty full right now, but the neonatologist came by and said that they were going to re-work somethings on their end (I guess they'll transfer some babes to the PICU). I assured him that it wouldn't be a big deal at all for me to wait a day, but he said that wouldn't be unnecessary. I felt very comfortable with the situation after talking with him so Baby Ned will be here tomorrow!!
At the moment, they're just trying to dialate me a little more and they expect to start the meds to really crank up the labor sometime in the "wee hours of the morning"....I'm not sure exactly what time that will be???
I still feel much at peace even though I thought I would be a nut case by now. Please keep this entire situation in your prayers. I love you all dearly!!
Betsy
They contemplated putting off my induction until tomorrow night, but decided to move forward. Apparently the NICU is pretty full right now, but the neonatologist came by and said that they were going to re-work somethings on their end (I guess they'll transfer some babes to the PICU). I assured him that it wouldn't be a big deal at all for me to wait a day, but he said that wouldn't be unnecessary. I felt very comfortable with the situation after talking with him so Baby Ned will be here tomorrow!!
At the moment, they're just trying to dialate me a little more and they expect to start the meds to really crank up the labor sometime in the "wee hours of the morning"....I'm not sure exactly what time that will be???
I still feel much at peace even though I thought I would be a nut case by now. Please keep this entire situation in your prayers. I love you all dearly!!
Betsy
Saturday, January 19, 2008
Great Expectations??
Before I begin, I'll go ahead and apologize for the length of this post. I have just had so many things revealed to me this week and I feel like I have to share the things I am going to write today. I have been so grateful that as Ned's birth draws close, God has gathered me unto Himself to show me that He is soverign and in control. Such peace that has brought to my life.
Thursday night I was awake off and on all night just praying. I'm not sure if any of you ever check the links for the other CDH babies, but I knew that Baby Liviana should have made her debut into the world and I had her and her mother Amy on my mind. I was, of course, also praying for Ned's healing. While lying there, the Lord said, "Betsy, you pray for healing, but you aren't really expecting me to heal him." My response...."Oh yes I am!" But God said, "Betsy, you haven't packed one thing for the baby to take with you to the hospital. You don't even have your infant car seat in the car to bring him home. If you're expecting miracles, you're very unprepared for it". I love it when God calls me out with such honesty and boldness.
I have a wonderful lady in my life who is my Bible teacher. I immediately remembered something she had taught me this past summer. We were studying in Genesis 22 where Abraham was taking Isaac up on the mountain to sacrifice. As they were leaving to head up, Abraham told his servant to stay with the donkey, he and Isaac were going up to the mountain to worship and he said WE'LL be back. He expected God to provide a replacement....the ram in the thicket. He never thought that God wouldn't show up and pull through for him....that's what made his faith so admirable.
During that time, my teacher's husband was having some medical issues which prevented him from being able to plant his tomato garden. He had asked her to plant and tend the garden for him. She agreed, although she knew nothing of gardening. She prayed over the garden and asked God to help her in making in fruitful. She said when she first went out to the garden to pick the tomatoes, she didn't take a bucket. She assumed that there couldn't be more tomatoes than she could carry by hand, but as she started reaping God's harvest, she soon saw that He had supplied in abundance....That's His nature. She had to return to the house to get a bucket to bring in all God had given in response to her prayer. Her point then was that she went to God not expecting and that's how I had been taking my requests concerning Ned's healing. (Psalm 5:3: In the morning, O Lord, you hear my voice, in the morning I lay my requests before you and wait in expectation.)
So Friday, I got up and went to my final doctor's appointment. It went very well, in fact, Dr. Niblack said he looks great! I'm just so thankful that there haven't been any other major problems detected like with his heart or anything. Each bit of good news is a blessing. I then stopped in to pick-up Ned some little onesies. I know this will be the first actual clothing they'll allow him to wear in the hospital, yet I had none. I had gone to TJ Maxx so it was kinda hit-n- miss and I could only find one onesie for a boy. It was blue with thin white stripes and it says, "apple of my eye" on it. This spoke volumes to me because for Christmas, Travis and I had given our Bible teacher a gift and on it was written Psalm 17:8, " Keep me as the apple of your eye; hide me in the shadow of your wings.".....it was PERFECT. Just a little glmpse of God to build my faith and give me assurance of His power.
Today, I sent Travis to locate our infant car seat so I would have a bucket in which to carry home my little miracle and I am spending the day washing up some blankets, my onesie, and some stuffed animals in that wonderful smelling baby washing detergent....now I'm expecting!
We will leave for Chapel Hill tomorrow to begin the induction tomorrow night for a scheduled delivery date on Monday. I am praying that not only will God reveal himself through Ned's healing and also that Travis and I will allow God to work through us in the situation to serve His purposes and plans of which we aren't even aware. The following verse has been my most heartfelt prayer this week:
"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death"
-Philippians 1:20
Thursday night I was awake off and on all night just praying. I'm not sure if any of you ever check the links for the other CDH babies, but I knew that Baby Liviana should have made her debut into the world and I had her and her mother Amy on my mind. I was, of course, also praying for Ned's healing. While lying there, the Lord said, "Betsy, you pray for healing, but you aren't really expecting me to heal him." My response...."Oh yes I am!" But God said, "Betsy, you haven't packed one thing for the baby to take with you to the hospital. You don't even have your infant car seat in the car to bring him home. If you're expecting miracles, you're very unprepared for it". I love it when God calls me out with such honesty and boldness.
I have a wonderful lady in my life who is my Bible teacher. I immediately remembered something she had taught me this past summer. We were studying in Genesis 22 where Abraham was taking Isaac up on the mountain to sacrifice. As they were leaving to head up, Abraham told his servant to stay with the donkey, he and Isaac were going up to the mountain to worship and he said WE'LL be back. He expected God to provide a replacement....the ram in the thicket. He never thought that God wouldn't show up and pull through for him....that's what made his faith so admirable.
During that time, my teacher's husband was having some medical issues which prevented him from being able to plant his tomato garden. He had asked her to plant and tend the garden for him. She agreed, although she knew nothing of gardening. She prayed over the garden and asked God to help her in making in fruitful. She said when she first went out to the garden to pick the tomatoes, she didn't take a bucket. She assumed that there couldn't be more tomatoes than she could carry by hand, but as she started reaping God's harvest, she soon saw that He had supplied in abundance....That's His nature. She had to return to the house to get a bucket to bring in all God had given in response to her prayer. Her point then was that she went to God not expecting and that's how I had been taking my requests concerning Ned's healing. (Psalm 5:3: In the morning, O Lord, you hear my voice, in the morning I lay my requests before you and wait in expectation.)
So Friday, I got up and went to my final doctor's appointment. It went very well, in fact, Dr. Niblack said he looks great! I'm just so thankful that there haven't been any other major problems detected like with his heart or anything. Each bit of good news is a blessing. I then stopped in to pick-up Ned some little onesies. I know this will be the first actual clothing they'll allow him to wear in the hospital, yet I had none. I had gone to TJ Maxx so it was kinda hit-n- miss and I could only find one onesie for a boy. It was blue with thin white stripes and it says, "apple of my eye" on it. This spoke volumes to me because for Christmas, Travis and I had given our Bible teacher a gift and on it was written Psalm 17:8, " Keep me as the apple of your eye; hide me in the shadow of your wings.".....it was PERFECT. Just a little glmpse of God to build my faith and give me assurance of His power.
Today, I sent Travis to locate our infant car seat so I would have a bucket in which to carry home my little miracle and I am spending the day washing up some blankets, my onesie, and some stuffed animals in that wonderful smelling baby washing detergent....now I'm expecting!
We will leave for Chapel Hill tomorrow to begin the induction tomorrow night for a scheduled delivery date on Monday. I am praying that not only will God reveal himself through Ned's healing and also that Travis and I will allow God to work through us in the situation to serve His purposes and plans of which we aren't even aware. The following verse has been my most heartfelt prayer this week:
"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death"
-Philippians 1:20
Friday, January 11, 2008
This may sound weird at first, but......
I know this isn't going to come across just right at first, but bear with me a moment. In many ways, I wish everyone had an opportunity to go through a rough time like this just so they could see all the good and all the love in others that I think we often times overlook. If I could publish all the wonderfully moving emails, cards and words of encouragement I have received over the past 5 months, it would be so much easier for everyone to understand how it has shaped my attitude and my faith.
I am so reminded of the story of David and Goliath when the Philistines told the Israelites to choose "one" of their soldiers to send down to fight the battle. When facing that giant individually, no solider was up to the challenge, but had they stood, shoulder to shoulder with their faith in God, they could have easily defeated the Philistines. I know that if I had felt at any time that this battle had been mine alone to fight, I could never have managed. But the truth is that I haven't even had to walk this journey, I have been completely carried through it. Thank you all so much for standing beside us through this!
Now...on to the medical update for the week. Thankfully, there has been little to report. I had an ultrasound Monday in Kings Mountain. Everything remained to look fine. The only interesting thing from that visit was that little Ned was holding up his little hand with three fingers up like he was at a rock concert....I think we may have a little rebel on our hands! Right now....it was really cute, but I'm not sure I'll be thinking the same thing when he is 16?
We also had a visit to Chapel Hill this week. Everything looks good for a delivery date of January 21st! Our plan is to go Chapel Hill to begin induction on the night of the 20th and deliver the next day! So, in a week from Sunday, I guess we'll be heading that way. It seems so surreal now that it is so close.
Please be praying for our medical staff. I am praying now that God will ordain the doctors and nurses who will be part of our team that day. I am also praying that I will be able to hand my child over into God's hands immediately so that I will be able to relinquish that "mom instinct" to cling to my baby. I am praying for peace, that our family will be strengthened during this time. At night, when I go in to pray over Jack, I am praying that even he will gain some sort of understanding or insight into the character of God at some level during this time. I'm not sure what he could be grasping, but I pray the Lord will use this to begin drawing Jack to Him at an early age. In the same way, when I talk to little Ned, I tell him how very lucky and privileged he is that he is going to be able to learn something at birth that it takes most of us a lifetime to understand.....that our strengths and accomplishments are brought forth when we simply rest in the arms of the Lord.
That's all I have for now. I'll be teaching Travis how to update the blog this week so if there are some weird random posts...we're working though some kinks.
Love you all!
Travis, Betsy, Jack & Baby Ned
I am so reminded of the story of David and Goliath when the Philistines told the Israelites to choose "one" of their soldiers to send down to fight the battle. When facing that giant individually, no solider was up to the challenge, but had they stood, shoulder to shoulder with their faith in God, they could have easily defeated the Philistines. I know that if I had felt at any time that this battle had been mine alone to fight, I could never have managed. But the truth is that I haven't even had to walk this journey, I have been completely carried through it. Thank you all so much for standing beside us through this!
Now...on to the medical update for the week. Thankfully, there has been little to report. I had an ultrasound Monday in Kings Mountain. Everything remained to look fine. The only interesting thing from that visit was that little Ned was holding up his little hand with three fingers up like he was at a rock concert....I think we may have a little rebel on our hands! Right now....it was really cute, but I'm not sure I'll be thinking the same thing when he is 16?
We also had a visit to Chapel Hill this week. Everything looks good for a delivery date of January 21st! Our plan is to go Chapel Hill to begin induction on the night of the 20th and deliver the next day! So, in a week from Sunday, I guess we'll be heading that way. It seems so surreal now that it is so close.
Please be praying for our medical staff. I am praying now that God will ordain the doctors and nurses who will be part of our team that day. I am also praying that I will be able to hand my child over into God's hands immediately so that I will be able to relinquish that "mom instinct" to cling to my baby. I am praying for peace, that our family will be strengthened during this time. At night, when I go in to pray over Jack, I am praying that even he will gain some sort of understanding or insight into the character of God at some level during this time. I'm not sure what he could be grasping, but I pray the Lord will use this to begin drawing Jack to Him at an early age. In the same way, when I talk to little Ned, I tell him how very lucky and privileged he is that he is going to be able to learn something at birth that it takes most of us a lifetime to understand.....that our strengths and accomplishments are brought forth when we simply rest in the arms of the Lord.
That's all I have for now. I'll be teaching Travis how to update the blog this week so if there are some weird random posts...we're working though some kinks.
Love you all!
Travis, Betsy, Jack & Baby Ned
Monday, January 7, 2008
And He Shall Be Called.....
We have finally decided on a name for this little one.....as if we have much more time to think about it? We're going to name him Elijah Ned and call him Ned. We've been really sure about the Ned part for some time, but picking a name that goes with Ned is really difficult. I always thought it was weird that my grandfather (whose name was Ned) didn't have a middle name. His name was just Ned Beam, but after trying to put something with it for so long, I completely understand why my great-grandmother opted to just go with plain ole Ned.
I haven't posted in some time and there are several reasons for that. Other than Christmas and the holiday schedule, we have been infested with the stomach virus at our house. Someone in the house has been sick for the past two weeks. It has finally gone through everyone so I think we should be clear now:0)
I also haven't really received any big news at any of my appointments over the past several weeks....which is always a good sign. I went to CMC last week and had an appointment with Dr. Stubbs. Not sure if I've ever mentioned it, but he was the first specialist we saw after the original diagnosis at 18 wks. During our first visit with him, he told us very little and then several days later he faxed a report to me at work diagnosing Ned with a severe heart complication and a genetic disorder basically saying he wasn't capable of surviving. Both of those diagnoses have either been ruled out since then or multiple other doctors have said that they don't see any evidence to come to such conclusions.
Anyway, I was much more prepared for my time with Dr. Stubbs this time around I guess because I knew what to expect with his bedside manner and such. The appointment was really weird and uncomfortable as expected....he kept asking if I had been going to doctor's appointments? He also called both Kings Mountain and Chapel Hill to make sure he was comfortable with the level of care I was receiving??? I left there so thankful that I had known early on that he and I weren't compatible. I felt sure that this pregnancy would have been much more difficult and stressful had I remained under his care.
The only real information we received at the CMC appointment was that some of the umbilical cord is looped around the baby's neck. When I first heard this I felt somewhat panicked, but all of my doctors have assured me that this actually happens all the time and that lots of babes are born with cording around their necks? I am just praying that the cord doesn't tighten during delivery causing complications that will lead to a c-section.
Other than that, my fluid levels have come down some and leveled off- still high, but not increasing. Baby Ned continues to practice breathe all the time which seems great to me since I've always heard that "practice makes perfect". His growth has continued on the same "normal" growth curve which he had earlier fallen off of for a short time. And still no sign of hydrops. While all of this seems uneventful, for me it is solid evidence that God's hand is in control of my situation. According to Ned's diagnosis regarding the severity of his birth defect, he should be having a very difficult time processing fluids; however, he seems to have mastered it at the moment. It doesn't mean very much from any medical perspective, but it does show me that God's healing powers aren't limited by our knowledge and our abilities.
Travis and I will head back to Chapel Hill on Wednesday for my last OB appointment there. I guess I'll get detailed instructions about what to expect on the induction date set for 01/20 or 01/21. I'll keep everyone posted on that.
Again, I need to say that I am completely overwhelmed and blessed by the amount of prayer and support that we have received during these past 5 months. The effects of such prayers have been so evident in my spirit. Your faithfulness has given me a peace and a comfort that I never thought I could have experienced facing this unknown.
Even now, at night, I find myself awake for long periods of time just praying and seeking God's will and purpose in all of this. And in the dark, lying there, I know that we are being lifted and held up by the prayers of others and I am just so very thankful for the place that God brought us to and the people that he placed in our lives for this moment.
I think back a lot to Abraham when he was wanting to ask God that if Lot was the only righteous man left in Soddom and Gemorrah, would God spare him. He never really asked God for what he wanted. He narrowed down from like "if there are 100 righteous" to "if there are 10 righteous", but what he really wanted was to say, "God, if Lot is the only one, will you save him," but he never asked......God would have assured him that Lot would be spared.
I have kept this in my mind during this pregnancy knowing that I am coming fully to the throne of God seeking what it is that my heart desires. I originally began praying for little blessings like, "please God don't let this baby need ECMO" or "if you'll just let his liver be back down so some more lung can form". But then I got real and asked God to please heal and restore my son's little body. I don't care how he does it or what kind of medical challenges we have to endure to reach that point, but what I really desire is to bring my son home whole. I would, of course, love a medical miracle, but my desire is not that I don't have to suffer some through the process, but that my child be healed. In all honesty, that is my only prayer request at this time.
Much love to you all,
Travis, Betsy, Jack & Baby Ned
I haven't posted in some time and there are several reasons for that. Other than Christmas and the holiday schedule, we have been infested with the stomach virus at our house. Someone in the house has been sick for the past two weeks. It has finally gone through everyone so I think we should be clear now:0)
I also haven't really received any big news at any of my appointments over the past several weeks....which is always a good sign. I went to CMC last week and had an appointment with Dr. Stubbs. Not sure if I've ever mentioned it, but he was the first specialist we saw after the original diagnosis at 18 wks. During our first visit with him, he told us very little and then several days later he faxed a report to me at work diagnosing Ned with a severe heart complication and a genetic disorder basically saying he wasn't capable of surviving. Both of those diagnoses have either been ruled out since then or multiple other doctors have said that they don't see any evidence to come to such conclusions.
Anyway, I was much more prepared for my time with Dr. Stubbs this time around I guess because I knew what to expect with his bedside manner and such. The appointment was really weird and uncomfortable as expected....he kept asking if I had been going to doctor's appointments? He also called both Kings Mountain and Chapel Hill to make sure he was comfortable with the level of care I was receiving??? I left there so thankful that I had known early on that he and I weren't compatible. I felt sure that this pregnancy would have been much more difficult and stressful had I remained under his care.
The only real information we received at the CMC appointment was that some of the umbilical cord is looped around the baby's neck. When I first heard this I felt somewhat panicked, but all of my doctors have assured me that this actually happens all the time and that lots of babes are born with cording around their necks? I am just praying that the cord doesn't tighten during delivery causing complications that will lead to a c-section.
Other than that, my fluid levels have come down some and leveled off- still high, but not increasing. Baby Ned continues to practice breathe all the time which seems great to me since I've always heard that "practice makes perfect". His growth has continued on the same "normal" growth curve which he had earlier fallen off of for a short time. And still no sign of hydrops. While all of this seems uneventful, for me it is solid evidence that God's hand is in control of my situation. According to Ned's diagnosis regarding the severity of his birth defect, he should be having a very difficult time processing fluids; however, he seems to have mastered it at the moment. It doesn't mean very much from any medical perspective, but it does show me that God's healing powers aren't limited by our knowledge and our abilities.
Travis and I will head back to Chapel Hill on Wednesday for my last OB appointment there. I guess I'll get detailed instructions about what to expect on the induction date set for 01/20 or 01/21. I'll keep everyone posted on that.
Again, I need to say that I am completely overwhelmed and blessed by the amount of prayer and support that we have received during these past 5 months. The effects of such prayers have been so evident in my spirit. Your faithfulness has given me a peace and a comfort that I never thought I could have experienced facing this unknown.
Even now, at night, I find myself awake for long periods of time just praying and seeking God's will and purpose in all of this. And in the dark, lying there, I know that we are being lifted and held up by the prayers of others and I am just so very thankful for the place that God brought us to and the people that he placed in our lives for this moment.
I think back a lot to Abraham when he was wanting to ask God that if Lot was the only righteous man left in Soddom and Gemorrah, would God spare him. He never really asked God for what he wanted. He narrowed down from like "if there are 100 righteous" to "if there are 10 righteous", but what he really wanted was to say, "God, if Lot is the only one, will you save him," but he never asked......God would have assured him that Lot would be spared.
I have kept this in my mind during this pregnancy knowing that I am coming fully to the throne of God seeking what it is that my heart desires. I originally began praying for little blessings like, "please God don't let this baby need ECMO" or "if you'll just let his liver be back down so some more lung can form". But then I got real and asked God to please heal and restore my son's little body. I don't care how he does it or what kind of medical challenges we have to endure to reach that point, but what I really desire is to bring my son home whole. I would, of course, love a medical miracle, but my desire is not that I don't have to suffer some through the process, but that my child be healed. In all honesty, that is my only prayer request at this time.
Much love to you all,
Travis, Betsy, Jack & Baby Ned
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