Just to clarify the heading, Ned is doing fine. He is still refluxing pretty severely; however, we have been able to manage it somewhat with the use of probiotics and continuous feeds. We're simply waiting for the 25th to repair the nissen procedure. I am really hoping that once that is complete, he will begin to make some progress on feeding by mouth. I have tried him several times on spoon feeds, but it seems to get to a certain place in his throat and up it comes. I am very encouraged that he is willing to try. I so hope he'll begin to eat a little soon! Even if we're still supplementing him through the g-tube at night, I sure would like to get back to work at some point. I really miss working....just getting showered and out of the house, living in somewhat of a routine and interacting with other adults during the day. I know this is just a season so I'm trying to focus on finding my way where I am and learning to praise God for the place in which He has me. One day, when Ned is going off to college or getting married, I'll look back on this time I have with him and be grateful. Although it isn't what I would choose right now, I certainly don't want to squander it as if it isn't a valuable experience.
On to the prayer request....other than surgery and eating prayers for Ned, there are several other families who are really walking through the fire right now. I'm not sure how many of you have kept up with Baby Skyla's blog. Skyla had the same two major defects as Ned and has struggled with complications from the repairs since her birth last October. I am deeply saddened today as Skyla has lost her fight. My heart is so burdened for her mother. I truely believe that God allowed Skyla to return to Him as she had served her purpose on this earth and He wanted to shelter her from any further suffering. Having said that, I don't know that it will give her mother any peace or comfort at this moment. She has been completely devoted to Skyla and has been her strongest supporter, ally and cheer section. Please pray for her family and specifically her mother, Kristy. I would love to say that I can't imagine what they are going through, but the truth is that I have imagined it in my head many more times than I care to recall. I can't begin to know the surreal reality that is consuming them, but I believe that they must be feeling completely crushed by the realization of all their fears and now facing a sense of loss like none other.
Also, please keep in mind that one day this week may be the day that Baby Seth makes his debut. Please pray that the Lord will lay his protecting hand upon little Seth at this very moment, that He will ordain Seth's birth and use the miraculous healing of Seth's body to speak into the hearts of others. Please keep his parents, April & Russell, in your prayers throughout the week. The unknown, when it relates to your children, is a very dark place to be. I am praying that they will feel the Lord guiding them and holding them granting peace throughout Seth's healing. They are both such beautiful people, I look forward to seeing what a precious child the Lord gives to two such people.
That's all for tonight. I believe in this prayer group and God's faithfulness to respond to your requests. I attribute Ned's life to each and every little prayer that was lifted up in his name. There is much power here and I'm hoping it can now be used to bless others.
Much love to you all!
Betsy, Travis, Jack & Ned
Saturday, June 14, 2008
Monday, June 2, 2008
Way Past Due
I realize that it has been forever and a day since I have updated the blog. The only reason I haven't kept it up very well is that we haven't installed high-speed internet access at our house yet and my verizon card is slower than dial-up. I think we'll be online in the next couple days; however, I have received several emails questioning Ned's progress. This may be short since my patience can't withstand this slow pace, but once we have our computer set up, I'll keep this blog up much more regularly again.
First, for the good news! Ned is growing by leaps and bounds. He weighed 8lbs. 12oz. when we left the hospital on 04/15 and today he weighed in at 11lbs. 8oz. He is getting quite chunky and it's completely cute. We have been meeting with an army of specialists since we got home and so far, they are all amazed at his progress considering his medical history. Everyone that enters our home or meets with us calls him a complete miracle and I agree knowing they have no idea how true their statements are. His developmental progress hasn't been terribly dealyed, amazingly, and we hope to have him back on track in about a month. I'm sure he isn't loving me because I'm like a drill sergeant!
Ned still isn't taking anything by mouth, and at the moment it appears that it will be at least a month before we can even begin to make any progress. His nissen procedure has failed....confirmed today with an upper GI test back in Chapel Hill. They are planning to repair it on the 25th of this month; however, he probably won't work on feeding by mouth very much until that is fixed. With all that in mind and knowing that teeth are soon to make their grand debut, I have decided to hang up on the nursing. It was a difficult decision for me, but my time is getting extremely strained with keeping up his feeding and supplies, along with pumping supplies, house cleaning, Jack and work. Something has to give and that seems like the most logical responsibility to relinquish especially considering that I have a stock pile which will get hime through a couple more months anyway.
This surgery at the end of the month will be Ned's seventh surgical procedure. While this sounds overwhelming at first, I am looking at it as God's perfect completion. In the Bible, the number seven signifies His completetion and, often times, rest (as in the Sabbath). In many circumstances, the seventh means "finished" and many verses surrounding the sevenths say "It is done". His promises and the truth in His living word have carried us though this and will see us through.
I apologize for the delay and I'll keep up better in the future....and I'll post pictures when the connection is faster. Thank you all for the continued love and prayers that have been poured out on our family.
In His love,
Betsy, Travis, Jack & Ned
First, for the good news! Ned is growing by leaps and bounds. He weighed 8lbs. 12oz. when we left the hospital on 04/15 and today he weighed in at 11lbs. 8oz. He is getting quite chunky and it's completely cute. We have been meeting with an army of specialists since we got home and so far, they are all amazed at his progress considering his medical history. Everyone that enters our home or meets with us calls him a complete miracle and I agree knowing they have no idea how true their statements are. His developmental progress hasn't been terribly dealyed, amazingly, and we hope to have him back on track in about a month. I'm sure he isn't loving me because I'm like a drill sergeant!
Ned still isn't taking anything by mouth, and at the moment it appears that it will be at least a month before we can even begin to make any progress. His nissen procedure has failed....confirmed today with an upper GI test back in Chapel Hill. They are planning to repair it on the 25th of this month; however, he probably won't work on feeding by mouth very much until that is fixed. With all that in mind and knowing that teeth are soon to make their grand debut, I have decided to hang up on the nursing. It was a difficult decision for me, but my time is getting extremely strained with keeping up his feeding and supplies, along with pumping supplies, house cleaning, Jack and work. Something has to give and that seems like the most logical responsibility to relinquish especially considering that I have a stock pile which will get hime through a couple more months anyway.
This surgery at the end of the month will be Ned's seventh surgical procedure. While this sounds overwhelming at first, I am looking at it as God's perfect completion. In the Bible, the number seven signifies His completetion and, often times, rest (as in the Sabbath). In many circumstances, the seventh means "finished" and many verses surrounding the sevenths say "It is done". His promises and the truth in His living word have carried us though this and will see us through.
I apologize for the delay and I'll keep up better in the future....and I'll post pictures when the connection is faster. Thank you all for the continued love and prayers that have been poured out on our family.
In His love,
Betsy, Travis, Jack & Ned
Sunday, May 18, 2008
We have been home for several days and are finally starting to get settled in! Thursday and Friday were pretty hectic just trying to get Ned in a routine and get our hands around all his care. He has settled in wonderfully, we really couldn't have asked for a better transition. Our biggest hurdle has been trying to get everything moved in and cleaned up in our house. We've also run into a coule of glitches with things not functioning properly while trying to get cable and phones and such as that installed over the weeknd. As of tonight, I feel safe saying "I think we have made it over the hump"!
Our most difficult part of bringing Ned home was the actual ride from Chapel Hill. We think he may have been a little car sick. I'm hoping he'll do better on the trip to his pediatrician tomorrow? Otherwise, he spent a couple of days looking around a bit bewildered but has now settled down and is acting like his old self. With one exception....he is trying to nurse a little bit. He still isn't taking any volume to speak of, but he is attempting to suck and swollow without gagging. For him, it is a huge improvement!
We've been so busy that I have hardly had time to reflect on how God brought us to this end. All I can think of in my head is that we have finally arrived to the only place I have wanted to be since last August...at my own home with Travis and my two boys. Above is a picture of Ned at home.....he looks like he's posing for the SI swimsuit additon with his hand cocked behind his head!
I just found my computer tonight so I'm going to sign off for now. I'll give better updates tomorrow!
Wednesday, May 14, 2008
Last Night in Chapel Hill
I joined Betsy in Chapel Hill tonight to find our little man sleeping soundly after his mom gave him a bath. In order to ride home with Betsy and Ned tomorrow, I needed to catch a ride up here and as you know, it's not a short trip. My good friend at work, Mark, graciously volunteered his time after a hard day's work to drive me up here then back to Gaston County. It's people like that and many others that God has placed in our path that has made this journey bearable. Tonight at dinner, we thanked God for the journey He has put us on, and of course for the miraculous healings He has dealt little Ned.
It is bitter sweet tonight, as the day we have been waiting on since August of 2007 is finally here. Tomorrow, we will bring Ned home healthy and intact. We know the road ahead is not going to be the easiest, but our Savior has shown His healing might, and we will continue to trust in Him during the years to come, with both our children and Margaretta. While we are so excited to get home, it is still hard leaving the many nurses and doctors that have been Betsy's friends and family while I was home working. These people mean so much to us, and we are taking every opportunity we can to tell them this. While I'm bloggiing, B is writing notes to many of these special people. I'm sure tomorrow will be a tear filled farewell also. It seems it won't be for long though, b/c we already have a follow up appointment scheduled for June, so that reunion will be special I'm sure.
Well, we've got a big day tomorrow, and with Ned passing all his "go-home" tests, and Betsy passing all her "go-home" tests as well, with flying colors I might add, it looks like we'll be ready to roll tomorrow some time. We owe our good friend Kelly and Moose a debt of gratitude as well, as they have allowed B to live in their apartment since they've gone home to Cville, and for this we are very grateful.
Thank you all again for the visits, cards, Sun-drops, and especially the prayers along the way. Please continue to lift my family up, and please let us know if there is anything we can do for any of you.
Love and God Bless,
Travis, Betsy, Jack & Ned
It is bitter sweet tonight, as the day we have been waiting on since August of 2007 is finally here. Tomorrow, we will bring Ned home healthy and intact. We know the road ahead is not going to be the easiest, but our Savior has shown His healing might, and we will continue to trust in Him during the years to come, with both our children and Margaretta. While we are so excited to get home, it is still hard leaving the many nurses and doctors that have been Betsy's friends and family while I was home working. These people mean so much to us, and we are taking every opportunity we can to tell them this. While I'm bloggiing, B is writing notes to many of these special people. I'm sure tomorrow will be a tear filled farewell also. It seems it won't be for long though, b/c we already have a follow up appointment scheduled for June, so that reunion will be special I'm sure.
Well, we've got a big day tomorrow, and with Ned passing all his "go-home" tests, and Betsy passing all her "go-home" tests as well, with flying colors I might add, it looks like we'll be ready to roll tomorrow some time. We owe our good friend Kelly and Moose a debt of gratitude as well, as they have allowed B to live in their apartment since they've gone home to Cville, and for this we are very grateful.
Thank you all again for the visits, cards, Sun-drops, and especially the prayers along the way. Please continue to lift my family up, and please let us know if there is anything we can do for any of you.
Love and God Bless,
Travis, Betsy, Jack & Ned
Tuesday, May 13, 2008
The Date Has Been Set!
We're going home on Thursday!! I can't believe it..... just seems like a dream! I'm a little afraid to completely get my hopes up, but it looks like a go. I had to say goodbye to some of my nurses today and I had a difficult time letting them go and knowing that they had to let my son go. They have invested a lot of time and energy into Ned's survival and progress. They have become my friends and the only family Ned has really known. As much as I am ready to get back home and to our normal life, the people I have met here will be dearly missed.
Most of our days are now being spent getting prepared for home. I have trained on the feeding pump that we'll be taking home. Ned began bolus feedings today and seems to be tolerating it rather well. The feeding change is a big adjustment for his belly, but he looks like he's going to make his peace with it. Ned passed his carseat test with flying colors. What that basically means is that he sat in his carseat for 3 hours without any problems....he actually slept through the whole thing. I can only hope he does the same for the road trip on Thursday!
The doctors have been so good to get everything set up for us at home. They have tracked down a pediatrician, and all my specialists in Charlotte. I will return to Chapel Hill for follow-ups with our surgery team, but everything else will be handled out of CMC. Ned's general surgeon told me yesterday that he and the heart surgeon were high-fiving in the hallways about how well Ned has done and how he's going home. That melts my heart that they are so excited about Ned...such truly beautiful people.
As an aside, baby Charlie has made it through his CDH repair this afternoon. His hernia didn't end up being that severe and they were able to close the whole without the use of a patch. They are planning on peforming his first of several surgeries to repair his heart defect on Friday. Please keep Charlie and his family in your prayers. They are still struggling to get their minds around everything and they have a long road to hoe.
I want to thank you all again for all your prayers and encouragement over the past 4 months and even prior to that. I know everyone will want to see Ned and I so wish we could have a big coming home party, but until we meet with some of his specialists, we're not sure how they are going to want us to handle germ control. I'll keep everyone posted on what they think his immune system and lungs can handle and as soon as we can have company, I'll let everyone know. Until then, I'll keep the blog updated so everyone can continue to track Ned's progress. I know you all have a lot of time and emotions invested in our little man as well. Love you all and can't wait to see you soon!
Much love and many blessings,
Betsy, Travis, Jack & Ned
Most of our days are now being spent getting prepared for home. I have trained on the feeding pump that we'll be taking home. Ned began bolus feedings today and seems to be tolerating it rather well. The feeding change is a big adjustment for his belly, but he looks like he's going to make his peace with it. Ned passed his carseat test with flying colors. What that basically means is that he sat in his carseat for 3 hours without any problems....he actually slept through the whole thing. I can only hope he does the same for the road trip on Thursday!
The doctors have been so good to get everything set up for us at home. They have tracked down a pediatrician, and all my specialists in Charlotte. I will return to Chapel Hill for follow-ups with our surgery team, but everything else will be handled out of CMC. Ned's general surgeon told me yesterday that he and the heart surgeon were high-fiving in the hallways about how well Ned has done and how he's going home. That melts my heart that they are so excited about Ned...such truly beautiful people.
As an aside, baby Charlie has made it through his CDH repair this afternoon. His hernia didn't end up being that severe and they were able to close the whole without the use of a patch. They are planning on peforming his first of several surgeries to repair his heart defect on Friday. Please keep Charlie and his family in your prayers. They are still struggling to get their minds around everything and they have a long road to hoe.
I want to thank you all again for all your prayers and encouragement over the past 4 months and even prior to that. I know everyone will want to see Ned and I so wish we could have a big coming home party, but until we meet with some of his specialists, we're not sure how they are going to want us to handle germ control. I'll keep everyone posted on what they think his immune system and lungs can handle and as soon as we can have company, I'll let everyone know. Until then, I'll keep the blog updated so everyone can continue to track Ned's progress. I know you all have a lot of time and emotions invested in our little man as well. Love you all and can't wait to see you soon!
Much love and many blessings,
Betsy, Travis, Jack & Ned
Sunday, May 11, 2008
The past couple days have been a bit slow and a little surreal and nostalgic for me. Ned continues to do well. We are working on getting him back up to full feeds which we should reach that goal by tomorrow afternoon. The home health equipment company will be delivering the feeding pump we will take home on Tuesday and we'll be trained on how to use that specific piece of equipment. I'm not sure if we'll leave here on Tuesday or Wednesday, but they are projecting one day or the other! They also hope to get Ned on bolus feeds pretty quickly which means that we'll pump him full of food over like 30 minutes then he'll have 2.5 hours where he is completely wireless!! At the moment, the only cord which remains is the feeding tube so he feels so free to me, it's amazing! When I went to pick up my friends new little girl the other day I felt so awkward because I wasn't sure what to do with my free hand that didn't need to be managing cords while lifting....I felt so incapable of holding a normal baby....I think I'll get used to it though.
I'm sure some of you remember that I mentioned meeting a girl named Kelly who was pregnant with a little boy, Charlie, who had been diagnosed prenatally with CDH and a heart condition. Charlie was born last Friday and has done pretty well over the weekend. They hope to perform his CDH repair on Tuesday if things continue to go well. Please keep him and his family in your prayers. Kelly is having a really difficult time at the moment and hasn't slept in 4 days.
Happy mothers' day to everyone...I'm going to celebrate mothers' day later this week when we're all together....FINALLY. Who can believe that this time next week I'll be home with both my boys? I love you all!
Betsy, Travis, Jack & Ned
PS- If anyone is looking for a night of good clean fun....please purchase and play "Cranium"....I have laughted my head off playing tonight!
I'm sure some of you remember that I mentioned meeting a girl named Kelly who was pregnant with a little boy, Charlie, who had been diagnosed prenatally with CDH and a heart condition. Charlie was born last Friday and has done pretty well over the weekend. They hope to perform his CDH repair on Tuesday if things continue to go well. Please keep him and his family in your prayers. Kelly is having a really difficult time at the moment and hasn't slept in 4 days.
Happy mothers' day to everyone...I'm going to celebrate mothers' day later this week when we're all together....FINALLY. Who can believe that this time next week I'll be home with both my boys? I love you all!
Betsy, Travis, Jack & Ned
PS- If anyone is looking for a night of good clean fun....please purchase and play "Cranium"....I have laughted my head off playing tonight!
Wednesday, May 7, 2008
The Pain After A Successful Surgery
Betsy and I arrived to the hospitol around 9am this morning to hang out with Ned a little while before they were to take him down to the OR. Dr. Adamson came in about 930 and said they were several hours behind schedule and that it would be around noon. Our nurse finally carted him down to the OR around 11:30. We went down to the cafeteria to get some lunch around 1:00pm, where we saw our surgeon eating lunch. Betsy asked him "What are you doing here", and he advised us they were just getting the anesthesia going and that they couldn't start without him. We later learned that he told our nurse that we "busted" him eating lunch. I don't know what we would do if God hadn't blessed us with such a wonderful surgeon. It has been such a relief to have such a wity, kind-hearted, and talented doctor in charge of all of Ned's surgerys. Anyway, the surgery was a success, and Dr. Adamson was pleased that he was able to get enough stomach twisted and turned to insert the G-tube along with performing the nissan procedure. This was our best case scenario going in, and there was a back up plan, but thankfully we didn't have to go to that.
We joined Ned back in his room around 500p and started a 5-hour process of trying to get him relaxed. In all Ned's past surgeries, he has come back to the NICU with breathing support of some kind, and they were able to have him on some pretty heavy doses of narcotics to alleviate most of the pain. Today, however, he came back to the NICU with no breathing support because he's been off of it for some time now, so they can't give him as much pain medication after this procedure. Kids that young tend to "forget" to breathe sometimes when they are that sedated. Ned was in what looked to be excruciating pain, and that is a very hard thing to watch. We were so helpless. The best we could do was just hold him, and pray to our God to alleviate that pain, which we have done, for hours. Finally, about 10pm, we thought he was settled down enough for us to run downstairs and grab a bite to eat. We sat there and talked about plans to stay the night rocking him, but as we returned to the NICU, our nurse informed us that he was sleeping, and seemed pretty calm at the moment. She assured us that she would call to wake us if she needed the reinforcements to come back tonight to try and soothe him the best we possibly can. Prayerfully, our good Lord will continue to comfort our child during the night.
The upcoming days seem to be ones of education as we will learn how to take care of Ned's G-tube and start to feed him with it. This is a very exciting time for us, as the doctors and nurses talk more and more of "going home". When they first mentioned us going home yesterday, it was the most incredible feeling, and along with it, came somewhat of a panic. I am going to go home tomorrow, and try to make sure at least the inside of our house is truly going to be liveable. I imagine I could just get the master bedroom in working order and be pretty safe, b/c all Betsy has talked about has been how she can't wait to pile up with Jack and Ned in the bed and just "be".
Another side note is that tonight should be our last night in the 'ol Ronald McDonald House. Our friends Kelly and Franklin will be heading home to C-ville with their new bundle of joy, Emily, for the summer and Betsy is going to stay at their apartment for the next few days, until we are discharged and take Ned home, which the doctors are still tentatively planning for the beginning of next week.
Please continue to join us in prayer, that Ned's following his G-tube surgery will be alleviated, and that we will be able to come home with him next week. What a miraculous journey this has been, and what blessings God has bestowed upon us! Thank you all for all you've done.
In Christ's love,
Travis, Betsy, Jack and Ned
We joined Ned back in his room around 500p and started a 5-hour process of trying to get him relaxed. In all Ned's past surgeries, he has come back to the NICU with breathing support of some kind, and they were able to have him on some pretty heavy doses of narcotics to alleviate most of the pain. Today, however, he came back to the NICU with no breathing support because he's been off of it for some time now, so they can't give him as much pain medication after this procedure. Kids that young tend to "forget" to breathe sometimes when they are that sedated. Ned was in what looked to be excruciating pain, and that is a very hard thing to watch. We were so helpless. The best we could do was just hold him, and pray to our God to alleviate that pain, which we have done, for hours. Finally, about 10pm, we thought he was settled down enough for us to run downstairs and grab a bite to eat. We sat there and talked about plans to stay the night rocking him, but as we returned to the NICU, our nurse informed us that he was sleeping, and seemed pretty calm at the moment. She assured us that she would call to wake us if she needed the reinforcements to come back tonight to try and soothe him the best we possibly can. Prayerfully, our good Lord will continue to comfort our child during the night.
The upcoming days seem to be ones of education as we will learn how to take care of Ned's G-tube and start to feed him with it. This is a very exciting time for us, as the doctors and nurses talk more and more of "going home". When they first mentioned us going home yesterday, it was the most incredible feeling, and along with it, came somewhat of a panic. I am going to go home tomorrow, and try to make sure at least the inside of our house is truly going to be liveable. I imagine I could just get the master bedroom in working order and be pretty safe, b/c all Betsy has talked about has been how she can't wait to pile up with Jack and Ned in the bed and just "be".
Another side note is that tonight should be our last night in the 'ol Ronald McDonald House. Our friends Kelly and Franklin will be heading home to C-ville with their new bundle of joy, Emily, for the summer and Betsy is going to stay at their apartment for the next few days, until we are discharged and take Ned home, which the doctors are still tentatively planning for the beginning of next week.
Please continue to join us in prayer, that Ned's following his G-tube surgery will be alleviated, and that we will be able to come home with him next week. What a miraculous journey this has been, and what blessings God has bestowed upon us! Thank you all for all you've done.
In Christ's love,
Travis, Betsy, Jack and Ned
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