Who can believe it, but today little Ned came completely off ALL oxygen...praise God! So far, he has done extremely well with it and it so so nice to have one less tube/wire attached to his little body. He also had another day of no puking....it was wonderful. He actually had on the same outfit tonight as I put him in last night around 9pm. He has never worn one outfit for a full 24 hours. His laundry typically piles up faster than anyone else's in the family because he spits upon himself so often. He also did a really great job laying up on my shoulder today. We're working on this so he can learn to roll over on his belly. You can imagine a child that has had three surgeries on his torso area isn't really keen on "tummy time" so we're slowing forcing Ned to reconcile himself to it....I think it may be working. I tried to work with him on feeding today...still no real progress there. He doesn't seem to get that process yet, but we'll try again tomorrow.
All in all he had a great day. He was alert most of the day and was really talking. When I say talking, what I mean is that he makes duck-like sounds. It's not the typicaly cooing of a baby. Ned kinda quacks at you when he tries to talk. I'm not sure why that is? It may be the easiest sound to make since his diaphram is needed to make noise? I have no idea, but the nurses and I get a real kick out of imitating him. As expected, Ned isn't that entertained by the whole thing. I am now having to hold the child all day long- he is extremely spoiled. When I put him in his bouncy or bed to go pump or eat, he cries until I return. It's very sad, I know. I am also aware that this is going to make my life at home more difficult when we get there, but that is just the monster I have created by wanting to hold him every second since they have finally allowed me to do so. He'll eventually want to get down and explore in life....I'll just snuggle him until then.
We have rescheduled the MRI again for tomorrow. I'm not sure of the time yet, but please keep it in your prayers. I realized this week that I have much to be thankful for and we have been blessed beyond measure so I'm not in the same fearful place as I was last week. I really would like for the MRI results to come back normal though. They are trying a more high-powered drug on Ned tomorrow to attempt to get him zonked out for the test. Maybe that will do the trick. At any rate, I bet I'll be able to put him down to eat tomorrow....he'll never know I'm gone. I'm going to try to work with him on his feeds first thing in the morning because he'll be so out of it all afternoon, it will be impossible.
That's about it for today- what a great day! Please continue to pray for Ned's MRI and his feeding progress. Also, for those of you who keep check on the other CDH baby links, they have a lot going on. There are several babies who are needing surgeries and others who have some serious impending reflux issues. Please check them out and continue to pray for their families as well. They have all be really good to continue to pray for and follow-up with Ned and his progress. They have also been a wonderful source of support and informaiton for me throughout this whole journey.....as have all of you!
I love you all!
Betsy, Travis, Jack & Ned
Wednesday, April 16, 2008
Tuesday, April 15, 2008
Thankful for Rest
When Travis and I stepped into Ned's room this morning, it was noticably quiet. The oscilating vent (typcially sounds like a go-cart engine) which was supporting the little boy in the back corner last night was turned off. It was an erie silence. I witnessed such loving kindness from the doctors and nursing staff today as they prepared that little, young family to let their little boy go. They had taken him off the vent so that little mama could have some time to snuggle her precious child in her arms for a while. They took them into a private room where they could spend their last moments with their son in private. Some of the nurses brought their cameras from home (which are much higher quality than the NICU cameras) and took lots of pictures so they would always have some family photos. They had called "Now I Lay Me Down to Sleep" (great organization, if you want to look it up), but they weren't sure if they were going to be able to make it in time. It turns out that the professional photographer showed up so the family will recieve double the pictures. They made that little boy and his family their top priority when they had nothing left to offer them but love. It was a true picture of Jesus in action. They went out of their way and picked up each other's work load to lavish acts of kindness of these very desperate little parents in their time of struggle. While it was heart wrenching, it was truly beautiful as well.
While I was feeling very bogged down the past several days with impending tests and set backs, today I have been overcome with a feeling of thankfulness. I suppose it began last night as Travis and I listened to the doctors explain to the family that their baby probably couldn't survive through the night. They asked, "to what lengths do you want us to go to keep him alive?". From across the asile, I wanted to yell, "to great lengths.....do whatever you have to do." But that little mother, who couldn't have been over 20, contemplated all the options and weighed what she believed would be beneficial and what may just be too painful and stressful for her young son to endure. I admired her courage and selflessness. As I internalized the situation, I wondered if I too could have removed my emotions enough from that situation to be that analytical....I doubted it. I have just felt a real need to continually thank God that He didn't lead me down that path....that Ned's fate didn't include a round table discussion with all the doctors about Baptisms, burial clothes, choices of funeral homes and determinations on how to spend out last moments with our child. If I ever feel overwhelmed by a test, procedure or surgery again, I will go back to that moment when I knew how very blessed we were.
The thanksgivings continued this morning when I checked in with Ned's nurse and she said he hadn't spit up all night. In fact, he didn't spit up, throw up or reflux all day long. He gagged about 3 times all day, but it was very anti-climatic. I have just been so thankful that my little man got a day of rest. He really needed it.....he was starting to look a little sickly again. He had lost a couple ounces over the past 4 days, but tonight he headed back in the right direction with the weight again! If we continue like this (please pray that we do), I'm sure we'll wait another 2 weeks before we perform the final surgery for the feeding tube. I'm still uncertain what kind of feeding tube he will receive, but we'll just wait and see. I am only sure that all the prayers about Ned's refluxing certainly have given the child a reprieve...thank you all so much!!! I think we should just mostly be hanging out most of the week until the end of the week when we're going to try for the MRI again.....so if you can keep that in your prayers as well....I hate to keep piling on the requests?!
I love you all for praying for our family so faithfully. When we are in times of struggle, I can feel your prayers carrying us through the darkness. You cannot imagine how your words of encouragement move me and how the inspired Bible verses I recieve speak to me in my moment so perfectly. There are certain spiritual experiences that are cornerstones for shaping your relationship with Christ....this will certainly be one of mine and each of you will have played a very real part in the works that God is performing in my life daily. So if you ever get to a place in your spiritual walk where you feel like God doesn't use you, think of me and know that He has, He does and He will.
Much love and many blessings!
Betsy, Travis, Jack & Ned
While I was feeling very bogged down the past several days with impending tests and set backs, today I have been overcome with a feeling of thankfulness. I suppose it began last night as Travis and I listened to the doctors explain to the family that their baby probably couldn't survive through the night. They asked, "to what lengths do you want us to go to keep him alive?". From across the asile, I wanted to yell, "to great lengths.....do whatever you have to do." But that little mother, who couldn't have been over 20, contemplated all the options and weighed what she believed would be beneficial and what may just be too painful and stressful for her young son to endure. I admired her courage and selflessness. As I internalized the situation, I wondered if I too could have removed my emotions enough from that situation to be that analytical....I doubted it. I have just felt a real need to continually thank God that He didn't lead me down that path....that Ned's fate didn't include a round table discussion with all the doctors about Baptisms, burial clothes, choices of funeral homes and determinations on how to spend out last moments with our child. If I ever feel overwhelmed by a test, procedure or surgery again, I will go back to that moment when I knew how very blessed we were.
The thanksgivings continued this morning when I checked in with Ned's nurse and she said he hadn't spit up all night. In fact, he didn't spit up, throw up or reflux all day long. He gagged about 3 times all day, but it was very anti-climatic. I have just been so thankful that my little man got a day of rest. He really needed it.....he was starting to look a little sickly again. He had lost a couple ounces over the past 4 days, but tonight he headed back in the right direction with the weight again! If we continue like this (please pray that we do), I'm sure we'll wait another 2 weeks before we perform the final surgery for the feeding tube. I'm still uncertain what kind of feeding tube he will receive, but we'll just wait and see. I am only sure that all the prayers about Ned's refluxing certainly have given the child a reprieve...thank you all so much!!! I think we should just mostly be hanging out most of the week until the end of the week when we're going to try for the MRI again.....so if you can keep that in your prayers as well....I hate to keep piling on the requests?!
I love you all for praying for our family so faithfully. When we are in times of struggle, I can feel your prayers carrying us through the darkness. You cannot imagine how your words of encouragement move me and how the inspired Bible verses I recieve speak to me in my moment so perfectly. There are certain spiritual experiences that are cornerstones for shaping your relationship with Christ....this will certainly be one of mine and each of you will have played a very real part in the works that God is performing in my life daily. So if you ever get to a place in your spiritual walk where you feel like God doesn't use you, think of me and know that He has, He does and He will.
Much love and many blessings!
Betsy, Travis, Jack & Ned
Suffering for Perfection
The past few days have been extremely tough for Ned and us. Betsy was home this weekend while Robin came up to stay with Ned. It all started when they went to do try the MRI on Friday for the 2nd time, and didn't get him sedated in time to make the appointment, so Ned had two days of drugs for naught. Over the weekend, his reflux troubles increased rapidly, to the point where they cut his breastmilk intake from full feeds down to 5 mL an hour and switched him to continuous feeds. Upon Betsy's arrival back in Chapel Hill on Sunday evening, he was still wretching and spitting up terribly, so they decided to try and get a central line IV access back in, in case they needed to give him nutrition from something other than the milk feeding tube. This turned out to be fruitless as they couldn't get the line in his neck because of all the scar tissue from having lines there before. A different nurse practitioner also failed to get a line in on Monday morning, so they wheeled Ned down to the operating room to put in a central line in his groin surgically, which was a success. They also put one in his head on his scalp for additional access if needed. His reflux has been pretty minimal today, but we're waiting to see what he does tonight and tomorrow, because he was fairly sedated from the surgery for the remainder of the day. He is currently getting about 10mL an hour on continuous feedings and they started giving him sugar water to supplement this.. They still have no idea what caused his major reflux problems as of late, but we're just praying that we've gotten through this.
As for the feeding issues we are having, we are still waiting on the doctors to decide which course of action to take. The surgeon who put the line in this morning mentioned that he thinks his stomach may be too small to actually get a G-tube in, as well as perform the nissen procedure (to cinch the opening between his esophogus and stomach not allowing him to reflux) or to put in a J-tube which is basically taking that same area of bowel they just put back together, making a Y out of it, and bringing one in out of the belly for us to be able to feed him directly into his bowel, bypassing his stomach. Either way, they are wanting to wait 2 more weeks to give his stomach/bowel area time to completely heal and scar up since his last surgery to put his bowel back in. This is of course, if they can control his reflux until then. Dr. Adamson came by today and spoke with us, and said he is going to get with the radiologist who did the X-rays this morning, to see exactly how big his stomach is before rushing to a decision on which feeding access procedure to perform.
We have both been struggling as of late, as we feel we've kind of hit a road block, and Ned's progress is either at a standstill or backsliding some. This is a very scary and uncertain time. I have found myself really struggling with everthing. As I left work around lunch today to drive up, I discarded my usual radio stations for some silent, alone time with God. I prayed that He would get my son and my family over these hurdles. I said I know this is all in God's perfect timing, but as He all too well knows (because I've been telling Him), we are tired and weary. I know I'm weary, and I know Betsy is weary, because being in that hospitol day in and day out drains you. I know our strenght is coming from the Lord, because it's impossible to humanly do what we're (she's) doing. Anyway, in addition to this, I also prayed that if He wasn't finished here, if He would have me or her do anything for anyone else, to make it perfectly clear. We also prayed this over dinner (if you call 9:45 dinner). We got back to the hosptiol about 10:15pm, and there was a young couple who's baby was across from Ned in the NICU. As we watched our big guy rest, we overheard the doctors talking to the parents of this very sick baby who is maxed out on the ventilator settings he/she is on. I immediately thanked God that the doctors never had the conversation we were hearing with my wife and I. We heard things like... "The support we are giving this baby is pretty much maxed out. We could be puncturing lungs right now. How much do you actually want us to do if things go badly tonight?". I could read the look on Betsy's face, as she could mine. I think we both just sat there with Ned, silently, praying. God really laid it on my heart right then, to pray with that couple. I was immediately freaking out, because those of you who know me fairly well know that that's not me. I'm not really a front lines guy, don't like the spotlight. But I knew, I hoped, the spotlight would be on God, not me. I worked myself up for it. I even asked Betsy if she would make the offer to them, break the ice, and I'd do the praying. I contemplated asking our nurse to offer prayer with them for their child. We decided to wait until they finished taking pictures of him/her, and go over and offer to pray with them before they left. It didn't quite work out. Our nurse and Betsy and I started talking about Ned and Jack, and home, and 5 minutes later I looked up and they were gone. I am really hoping and praying that I didn't miss this opportunity. I am now praying that God will present this opportunity again tomorrow morning when we go back to the hospitol, and that it's not too late.
In addition to praying for Ned, I ask that you guys also pray that we will continue to take notice, and really listen to where God is leading us, as we wait and expect God to heal our baby boy, hopefully to bring him home very soon. Thank you for all your prayers and your encouragement day after day.
In Christ,
Travis, Betsy, Jack, and Ned
As for the feeding issues we are having, we are still waiting on the doctors to decide which course of action to take. The surgeon who put the line in this morning mentioned that he thinks his stomach may be too small to actually get a G-tube in, as well as perform the nissen procedure (to cinch the opening between his esophogus and stomach not allowing him to reflux) or to put in a J-tube which is basically taking that same area of bowel they just put back together, making a Y out of it, and bringing one in out of the belly for us to be able to feed him directly into his bowel, bypassing his stomach. Either way, they are wanting to wait 2 more weeks to give his stomach/bowel area time to completely heal and scar up since his last surgery to put his bowel back in. This is of course, if they can control his reflux until then. Dr. Adamson came by today and spoke with us, and said he is going to get with the radiologist who did the X-rays this morning, to see exactly how big his stomach is before rushing to a decision on which feeding access procedure to perform.
We have both been struggling as of late, as we feel we've kind of hit a road block, and Ned's progress is either at a standstill or backsliding some. This is a very scary and uncertain time. I have found myself really struggling with everthing. As I left work around lunch today to drive up, I discarded my usual radio stations for some silent, alone time with God. I prayed that He would get my son and my family over these hurdles. I said I know this is all in God's perfect timing, but as He all too well knows (because I've been telling Him), we are tired and weary. I know I'm weary, and I know Betsy is weary, because being in that hospitol day in and day out drains you. I know our strenght is coming from the Lord, because it's impossible to humanly do what we're (she's) doing. Anyway, in addition to this, I also prayed that if He wasn't finished here, if He would have me or her do anything for anyone else, to make it perfectly clear. We also prayed this over dinner (if you call 9:45 dinner). We got back to the hosptiol about 10:15pm, and there was a young couple who's baby was across from Ned in the NICU. As we watched our big guy rest, we overheard the doctors talking to the parents of this very sick baby who is maxed out on the ventilator settings he/she is on. I immediately thanked God that the doctors never had the conversation we were hearing with my wife and I. We heard things like... "The support we are giving this baby is pretty much maxed out. We could be puncturing lungs right now. How much do you actually want us to do if things go badly tonight?". I could read the look on Betsy's face, as she could mine. I think we both just sat there with Ned, silently, praying. God really laid it on my heart right then, to pray with that couple. I was immediately freaking out, because those of you who know me fairly well know that that's not me. I'm not really a front lines guy, don't like the spotlight. But I knew, I hoped, the spotlight would be on God, not me. I worked myself up for it. I even asked Betsy if she would make the offer to them, break the ice, and I'd do the praying. I contemplated asking our nurse to offer prayer with them for their child. We decided to wait until they finished taking pictures of him/her, and go over and offer to pray with them before they left. It didn't quite work out. Our nurse and Betsy and I started talking about Ned and Jack, and home, and 5 minutes later I looked up and they were gone. I am really hoping and praying that I didn't miss this opportunity. I am now praying that God will present this opportunity again tomorrow morning when we go back to the hospitol, and that it's not too late.
In addition to praying for Ned, I ask that you guys also pray that we will continue to take notice, and really listen to where God is leading us, as we wait and expect God to heal our baby boy, hopefully to bring him home very soon. Thank you for all your prayers and your encouragement day after day.
In Christ,
Travis, Betsy, Jack, and Ned
Thursday, April 10, 2008
Ned Delays Results
This blog will be brief because I'm really tired and the day was exhausting, yet uneventful. Ned's MRI was scheduled for 9:30 this morning. I got to the hospital around 10:30 when he was due to return to the NICU. He and his nurse, Amy, rolled back into the room around 10:45....no MRI was performed. Ned had takend 4 boluses of narcotics, but was wide awake and happy as a lark. He was playing and kicking around- not suitable behavior for a test. While he appeared to be narcotic resistant, he actually just has a really delayed reaction. Around noon, he finally zonked out into a drug-induced sleep never to really wake-up for the rest of the day.
So, we'll reschedule the MRI, probably for next week, now knowing that he will need to be sedated hours in advance. Please continue to pray for normal brain structure. Also, that his lungs will remain clear. On days when he is sedated, he doesn't feel the sensation to cough to clear his lungs and they start sounding really junky....not good for a child with chronic lung disease.
I'll post more later- love you all!
Betsy, Travis, Jack & Ned
So, we'll reschedule the MRI, probably for next week, now knowing that he will need to be sedated hours in advance. Please continue to pray for normal brain structure. Also, that his lungs will remain clear. On days when he is sedated, he doesn't feel the sensation to cough to clear his lungs and they start sounding really junky....not good for a child with chronic lung disease.
I'll post more later- love you all!
Betsy, Travis, Jack & Ned
Wednesday, April 9, 2008
More of the Same
As I entered the NICU today my nurse advised me that they planned to perform and MRI on Ned's brain. They have some concerns about his brain development and/or damage due to the fact that he has some issues with controlling his left eye. I fretted over it all day even after the doctors delayed the MRI until tomorrow. I have always noticed that his eye wandered a bit. Actually, it is much more controlled now than it was initially. I felt encouraged at the progress and just assumed it would correct itself over time or that he may need to see an opthomologist, not a neurologist! Dr. Adamson also indirectly let me know that he would prefer to put off the g-tube surgery for a couple weeks so we'll be here at least another month.
After all the news of the day, I began feeling extremely overwhelmed so I went for a little walk. When I walk or run alone, I pray. Tonight, I honestly spent the entire trip praying for myself and my family (I apologize to all others who are on my prayer list). I feel like I have compromised every responsiblity in my life. While trying to juggle them all, I have failed on all accounts. I have, obviously, no control over Ned's physical or mental development; I receive 30 second snippets of Jack's life over the phone at night which essentially to me means that I have missed the past 3 months of his life; and in an effort to spare Travis the burden of having to deal with me when I'm an emotional mess, I continually bite his head off when he attempts to console me.
As I walk I try to lay these things at the foot of the cross, but I am completely overcome with fears that may be completely illogical, but I can't seem to erase them from my mind. Once Ned has his nissen procedure (where they tighten the sphincter leading into the esophogus), he will never be capable of vomiting. While I had always hoped that my children wouldn't be partaking in binge drinking, now it could be a fatal decision for Ned. So I'm praying that I will be able to instill in my children the value of holding their bodies as sacred temples, hoping that Jack will lead Ned by example as his big brother.....really trying to be positive- then the irrational fears completely take over. Maybe Ned won't ever come to a university like this and have the opportunity to avoid making really poor decisions. I am suddenly gripped with thoughts that I may possibly always have to watch Ned struggle to perform the most simple of tasks. Maybe he won't be able to learn his ABC's which Jack mastered somewhere around age 2. Maybe I'll never be able to know him past a vague look in his eyes. I fear that the real life of my son will be trapped somewhere within where it can't get out and I can't reach deep enough to know it. But my biggest fear is that this encroaching fear that continually and quite commonly pops into my life in the form of an unknown medical anomoly will become a common fixture in our family. That it will be as normal and recurring as dental visits, that it will loom over us in a way that it will always occupy the empty chair at the dinner table.
That's when the Lord spoke to me, "Not if you dine with me at my table" I stop my walk and tensions are eased. God tells me that if I stay in close communion with Him, my fears cannot conquer me. It is amazing how one word from the Lord can calm you. I am still afraid, but now I am resolute to pray through it. Whereas, before my walk, I was contemplating the need for medication. Just as Jesus calmed the fears of the disciples when he stepped into the boat with them (John 6:18-21) and the seas and their fears subsided, as did mine when I realized that He alone could calm the storms raging in me.
Tonight I am praying that I will allow God to take my fears from me so that I can find some peace regarding tomorrow's MRI. I am also praying that the MRI will be normal. In my logical mind, I feel pretty good about it, but in the world of the "what if's", I become completely overwhelmed. I guess just knowing that there is the possibility is enough to cause me some panic. I am praying the following verses (Psalm 27:1-5)
(1) THE LORD is my Light and my Salvation--whom shall I fear or dread? The Lord is the Refuge and Stronghold of my life--of whom shall I be afraid? (2) When the wicked, even my enemies and my foes, came upon me to eat up my flesh, they stumbled and fell. (3) Though a host encamp against me, my heart shall not fear; though war arise against me, [even then] in this will I be confident. (4) One thing have I asked of the Lord, that will I seek, inquire for, and [insistently] require: that I may dwell in the house of the Lord [in His presence] all the days of my life, to behold and gaze upon the beauty [the sweet attractiveness and the delightful loveliness] of the Lord and to meditate, consider, and inquire in His temple. (5) For in the day of trouble He will hide me in His shelter; in the secret place of His tent will He hide me; He will set me high upon a rock.
Thank you for your continued prayers and concern. And thank you for allowing me to share my fears with you- they somehow loose their power when I share them and publically hand them over to the Lord....again, you'll never know how much you have all meant to me during this time...I just can't express it enough.
Lots and lots of love and blessings!
Betsy, Travis, Jack and Ned
After all the news of the day, I began feeling extremely overwhelmed so I went for a little walk. When I walk or run alone, I pray. Tonight, I honestly spent the entire trip praying for myself and my family (I apologize to all others who are on my prayer list). I feel like I have compromised every responsiblity in my life. While trying to juggle them all, I have failed on all accounts. I have, obviously, no control over Ned's physical or mental development; I receive 30 second snippets of Jack's life over the phone at night which essentially to me means that I have missed the past 3 months of his life; and in an effort to spare Travis the burden of having to deal with me when I'm an emotional mess, I continually bite his head off when he attempts to console me.
As I walk I try to lay these things at the foot of the cross, but I am completely overcome with fears that may be completely illogical, but I can't seem to erase them from my mind. Once Ned has his nissen procedure (where they tighten the sphincter leading into the esophogus), he will never be capable of vomiting. While I had always hoped that my children wouldn't be partaking in binge drinking, now it could be a fatal decision for Ned. So I'm praying that I will be able to instill in my children the value of holding their bodies as sacred temples, hoping that Jack will lead Ned by example as his big brother.....really trying to be positive- then the irrational fears completely take over. Maybe Ned won't ever come to a university like this and have the opportunity to avoid making really poor decisions. I am suddenly gripped with thoughts that I may possibly always have to watch Ned struggle to perform the most simple of tasks. Maybe he won't be able to learn his ABC's which Jack mastered somewhere around age 2. Maybe I'll never be able to know him past a vague look in his eyes. I fear that the real life of my son will be trapped somewhere within where it can't get out and I can't reach deep enough to know it. But my biggest fear is that this encroaching fear that continually and quite commonly pops into my life in the form of an unknown medical anomoly will become a common fixture in our family. That it will be as normal and recurring as dental visits, that it will loom over us in a way that it will always occupy the empty chair at the dinner table.
That's when the Lord spoke to me, "Not if you dine with me at my table" I stop my walk and tensions are eased. God tells me that if I stay in close communion with Him, my fears cannot conquer me. It is amazing how one word from the Lord can calm you. I am still afraid, but now I am resolute to pray through it. Whereas, before my walk, I was contemplating the need for medication. Just as Jesus calmed the fears of the disciples when he stepped into the boat with them (John 6:18-21) and the seas and their fears subsided, as did mine when I realized that He alone could calm the storms raging in me.
Tonight I am praying that I will allow God to take my fears from me so that I can find some peace regarding tomorrow's MRI. I am also praying that the MRI will be normal. In my logical mind, I feel pretty good about it, but in the world of the "what if's", I become completely overwhelmed. I guess just knowing that there is the possibility is enough to cause me some panic. I am praying the following verses (Psalm 27:1-5)
(1) THE LORD is my Light and my Salvation--whom shall I fear or dread? The Lord is the Refuge and Stronghold of my life--of whom shall I be afraid? (2) When the wicked, even my enemies and my foes, came upon me to eat up my flesh, they stumbled and fell. (3) Though a host encamp against me, my heart shall not fear; though war arise against me, [even then] in this will I be confident. (4) One thing have I asked of the Lord, that will I seek, inquire for, and [insistently] require: that I may dwell in the house of the Lord [in His presence] all the days of my life, to behold and gaze upon the beauty [the sweet attractiveness and the delightful loveliness] of the Lord and to meditate, consider, and inquire in His temple. (5) For in the day of trouble He will hide me in His shelter; in the secret place of His tent will He hide me; He will set me high upon a rock.
Thank you for your continued prayers and concern. And thank you for allowing me to share my fears with you- they somehow loose their power when I share them and publically hand them over to the Lord....again, you'll never know how much you have all meant to me during this time...I just can't express it enough.
Lots and lots of love and blessings!
Betsy, Travis, Jack and Ned
Monday, April 7, 2008
Surgery Number 4!
It was decided yesterday that Ned will need a g-tube to assist with his feedings so that he can go home pretty soon. A g-tube is basically a feeding tube that is surgically placed directly into the stomach. It just looks like a little plastic button on the baby's tummy from the outside and we'll just hook-up his feeds through that once we're at home. The benefits are that we'll be able to control his nutrition intake and get home sooner where we can continue working on his ability to feed by mouth and the g-tube will be removed when it is no longer needed. There is alway the added bonus of being able to set him to receive continuous feeds throughout the night so we can all get some much needed rest. The downside for me is, of course, another surgery! During the surgery they may also tighten the sphincter between his esophogus and stomach to held reduce reflux issues and the pulmonary docs may run a little camera down his airway to check for any narrowing places due to scar tissues since he'll be sedated. We're still waiting on the formal results of some testing today, which completely zapped Ned of all his energy, to determine what all will be done during this surgery. I'm not sure when the surgery will be performed. They had originally said it would be this Thursday; however, Dr. Adamson, who performed two of Ned's previous surgeries, said it wouldn't be on Thursday. I'm not sure if that's because he isn't in the OR on Thursdays and he wants to perform the surgery or what? We'll just see today.
I had to meet with the early childhood development people at home yesterday morning who will provide therapies to Ned to keep him on track devleopmentally once we're home. By the time I got back to Chapel Hill, Ned had already gone through a swallow test to check his refulx and he had fought them every step of the way. To say the least, the child was exhausted. I tried to wake him up to make an attempt at nursing, but he wasn't at all interested so we gave it up for the day.
Please keep this surgery in your prayers and that Ned's body will heal to a point where we can return home. Also, I am seeing God begin to perform mighty works up here amont both RMH residents and people at the hospital. It's just the beginings of some things, but I am praying that I can remain focused and alert and not get my sights set on home too quickly. I have been reminded of the disciples when they fell asleep in the Garden the night before Jesus' crucifixtion and His heart wrenching words, "could you not watch for me even for one hour". I realize that God may be wanting me to be here for His purposes and even in times when I'm tired and just burnt out with being here, the time we remain here will seem short in retrospect. But if that time could change the heart of someone or just plant a seed in someone's heart, it would be well worth all our time and suffering. I mean a little earthly inconvenience compared to an eternal life.....no comparison. Please pray that I will be able to keep all of this in perspective.
I love you all so much and I again, the gratitude that I feel for all the prayers I have received cannot be fully expressed.
Betsy, Travis, Jack & Ned
I had to meet with the early childhood development people at home yesterday morning who will provide therapies to Ned to keep him on track devleopmentally once we're home. By the time I got back to Chapel Hill, Ned had already gone through a swallow test to check his refulx and he had fought them every step of the way. To say the least, the child was exhausted. I tried to wake him up to make an attempt at nursing, but he wasn't at all interested so we gave it up for the day.
Please keep this surgery in your prayers and that Ned's body will heal to a point where we can return home. Also, I am seeing God begin to perform mighty works up here amont both RMH residents and people at the hospital. It's just the beginings of some things, but I am praying that I can remain focused and alert and not get my sights set on home too quickly. I have been reminded of the disciples when they fell asleep in the Garden the night before Jesus' crucifixtion and His heart wrenching words, "could you not watch for me even for one hour". I realize that God may be wanting me to be here for His purposes and even in times when I'm tired and just burnt out with being here, the time we remain here will seem short in retrospect. But if that time could change the heart of someone or just plant a seed in someone's heart, it would be well worth all our time and suffering. I mean a little earthly inconvenience compared to an eternal life.....no comparison. Please pray that I will be able to keep all of this in perspective.
I love you all so much and I again, the gratitude that I feel for all the prayers I have received cannot be fully expressed.
Betsy, Travis, Jack & Ned
Wednesday, April 2, 2008
The last leg of the race
We have finally started attempting to teach Ned to eat by mouth...he isn't very interested in the whole prospect. He is taking about 5cc's by mouth....his feed volume is 65 cc's every three hours? You can see we have a really long way to go. He doesn't really understand the concept of sucking...just chews and happens to swallow, while gagging, some of the milk. This is obviously going to be our biggest hurdle on the road to home. Please keep this in your prayers. He is such a hard little worker though and has kept such a pleasant attitude about continuing to try. I am thankful he isn't violently resisting or I would feel somewhat abusive! We'll just keep at it until he starts to get the hang of it.He has weaned down on the flow of the vapotherm oxygen. Today he was on 2 liters and they'll probably bring him down to 1.5 liters tomorrow. Once we hit the 1 liter mark, we'll transfer to straight oxygen which we can bring home with us if necessary- so we're really close in that respect.
I have several other prayer requests that don't relate to Ned at all. First, one of Travis and my classmates from high school has a father who has suffered a massive coronary attack last Friday. He has undergone quad bypass surgery and valve replacement but is still struggling with the recovery. Please pray for his healing and his family during this time...they have been very faithful in praying for Ned and I would like for their family to feel the same support we have felt.
I also met a girl in the Ronald McDonald house who is pregnant with a son who has been diagnosed with CDH and hypoplastic left heart syndrome. Her name is Kelly and her son's name is Charlie Ray. One of the doctor's in Charlotte misdiagnosed Ned with the same heart defect early on in my pregnancy and most of what I remember is that the repair for that heart defect requires about 4 surgeries. I spoke with her a little bit about how God worked on me during my pregnancy and what a miracle Ned's healing has been. I am hopeful that by seeing what God has done for Ned, she can find hope and peace in her situation. She isn't due until May, but has had some early signs of labor so she is staying her until delivery. Please keep her in your prayers.
That's all for tonight....gonna add some pictures below. Ned is really gaining weight...he's up to about 8lbs. 2oz.....Yeah!!!! They weight gain is the highlight of my day, everyday!
Much love and many blessings,
Betsy, Travis, Jack & Ned
Subscribe to:
Posts (Atom)