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

Psalm 27:13-14 (Amp)

Wednesday, April 30, 2008

We have had some pretty uneventful days, and for that, I am extremely thankful. Ned had his reflux test yesterday. Again, it showed he had reflux, but what that will mean for his surgery is unknown. I expect that Dr. Adamson, our surgeon, will come by this afternoon sometime since today is a surgery day for him. As a matter of fact, it was supposed to be our surgery day, but I think we're tentatively on the schedule for next Wednesday.

Ned continues to gain weight and look really great. I am starting to work with him on sitting up, rolling over, finding his feet and still learning to suck. He is starting to enjoy our structured and purpose driven "play time". I can't wait to get over there this morning because, like all babies, morning is his most playful time.

I can't think that I have that much more to share, or either I'm just cutting short because I am in a rush to get to him? Anyway, please pray for his continued progress and development. There are also two babies whose families are in the house who could really use your prayers today.

Talisa, who was born in March, I think, was given an hour to live after birth. She has been doing extremely well until yesterday. She started retaining fluid and they are going to have to do surgery today to try to relieve that. Please pray that this surgery will put her back on track to recovery. She has wonderful parents who are really pulling for her survival. How interesting is it that the mom's dad was the trumpet player for James Brown? Very cool.

Logan, is 9 months old and has a genetic disease that affects his bowel. He will eventually need a liver and bowel transplant, but at the moment, he has been unable to rid his body of infection for the past 2 months. His parents are atheist, kinda- they believe in the power of a god, but don't believe in God? Anyway, nobody is praying for Logan. That has broken my heart to think that little boy has struggled so and no one has been lifting up prayers for him. His father isn't the least bit interested in being talked to about salvation, but I do enjoy talking to him. He is a marine who has gone on two deployments into Iraq. I am so grateful for what he does and the life that his sacrifice offers me here at home. He knows that I believe in a God who is only accessible through the saving power of Jesus. Believe it or not, it came up in conversation in a way where we weren't discussing his beliefs at all. Anyway, Logan has been battling this infection for some time and making no progress, please pray that he can overcome it.....

Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

Sunday, April 27, 2008

Quick Update or Lack Thereof?

I would like to be giving everyone a rundown of how we expect our last weeks in Chapel Hill to play out at this point; however, I really have no idea. As of Saturday morning, the infection in Ned's central line (which is like a deeper IV) was still there so this morning they removed that line. The infection wasn't growing out from his other blood cultures so it is likely that it was just in that line. He remains on antibiotics and we'll just have to see how this affects our surgery schedule which was set for Wednesday. In the back of my mind, I'm hoping we'll move forward on that date, but my more discerning common sense tells me to forget it. I should know more tomorrow.

Ned went to nuclear science for his gastric emptying test on both Thursday and Friday...both attempts were unsuccessful. I wasn't the least bit surprised. When they explained to me that they had to take him off any feeds for six hours, then take him down to a test where they would inject 20mL's of radioactive fluid into in stomach, I thought....there's no way. He can hardly tolerate 20mL's of breast milk on continuous feeds, I somehow knew pushing large volumes of radioactive dye in at one time would go over very well. Needless to say, he puked some of it up both days and they have scrapped that study altogether. As far as I know, they are still planning on performing a repeat upper GI study tomorrow to decide about whether or not he'll need the nissen procedure.

Other than there being no real end in sight, things are going well. Ned has been a bit tired lately, I think it's just from fighting off infection. He has been really sweet about laying up on my shoulder and even starting to tolerate some tummy time! I'll start working with him again tomorrow on that and feeding. I have talked to so many people this weekend who have been praying for Ned and it just continues to completely overwhelm me. Specifically children who pray and are interested in seeing me because they get a real sense of who they are praying for. For me, that is the most touching. My heart melts to see kids, from toddlers to teens who make a point to tell me how much they love praying for Ned...Wow! The encouragement couldn't have come at a better time when I was starting to look more toward home than toward God. I am reminded that His purposes are so much greater than mine. His works are for good and they are for the multitudes. I thought it would be such a blessing if Jack and Margaret learned some things about God and His ways through all of this, but, as usual, His plan has been exceedingly abundant.

I love you all!
Betsy, Travis, Jack & Ned

Wednesday, April 23, 2008

Still Up In The Air

Well, Ned's fever subsided late last night (or early this morning, depending on how you look at it) and hasn't returned thus far...praise God for that. At this point the cultures are still growing and the docs aren't sure if his fever is from the MRSA or if he just has some other infection. I think the antibiotics they are using seems to be knocking it out whatever it is, but they'll know more certainly tomorrow. In the meantime, we have now been moved to a quarintine room within the NICU. You have to gown up and wear gloves in there at all times. Our attending doctor says this hospital policy is crazy since probably every nurse in the NICU is a MRSA carrier, but that's the policy. Now I sit in a silent room alone wearing gloves and an oversized robe all day with little Ned. I can't wait to get home! On the bright side, it is quiet in there so hopefully, Ned will get accustomed to a quiet room for sleep? Assuming we can knock out this infection, we still plan on performing his last surgery a week from today. Ned will have the GI motility study tomorrow and a repeat upper GI study to look at his reflux early next week. I'm just praying that this infection clears quickly and we can stay on track. Also, if anyone knows any good books, I've really got some time right now.

I am so thankful for all your prayers concerning Ned's temperature last night. I again found myself laying hands on this child and praying until I couldn't keep my eyes open. I often wonder how many times I'll find myself in this situation with him. Understanding my own lack of control gives me a greater sense of urgency when praying for Ned. If I were completely honest with myself, I would be every bit as devoted to all my prayers because although I feel like I can control other areas of my life, I actually have no control there either! I am trying to prevent myself from praying that God will stick to the given timeframes so that I can remain flexible to His time, but I'm having a difficult time not trying to discreetly mention it to Him every so often. Like I need to remind Him that I am getting weary and a little homesick. He knows. But everytime I look at little Ned while the nurses give report (a run down of Ned's medical history) to a new person on duty, I am reminded by their reaction how wonderful God has been and what a precious gift He has givnen me. It never fails that every new nurse Ned has automatically starts calling him a "real miracle baby" and I absolutely have to agree. My doctors said today that they were actually amazed that Ned has spent such a long time period in the hospital and been to so many areas of the hospital and just now picked up his first infection and that he seems to have overcome it so quickly. God has made even Ned's "bumps in the road" easier than expected. I am so thankful.

Below are some pictures of Jack and Ned's first encounter....sorry for the delay. I'm going to have to say this was the most joyful experience of my life. I'm not sure how much the delay played into my emotions, but something about my two babes meeting for the first time gave me such a feeling of wholeness that it was completly overwhelming!!!

Tuesday, April 22, 2008

Big prayers!!

I'm running back over to the hospital tonight....they just called and Ned has spiked a fever of 104. The NICU tested all kiddos for MRSA today and Ned came back positive as a carrier. At the moment, they aren't sure if the fever is response to the MRSA, another infection or a virus. They are in the process of growing out cultrues, but results will take up to 48 hours. They have started him on two broad spectrum antibiotics. I'll update when I return tonight, just please pray that this passes....I have been so thankful not to have encountered any infection thus far. Just pray that what they have started him on will knock out whatever he has? Thank you

Technical Difficulties

I know I promised to post pictures and video footage of Jack and Ned's first encounter, but I've hit a few snags. For one, there will be no video footage because apparently the "record" button on our video camera isn't working? Not sure if that will be repairable or a reason to replace the thing. It picked a fine time to flake out on me though. I did get a couple of really sweet photos of the two of them, but I have momentarily misplaced the adaptor that downloads the images from my camera to the computer. My best guess is that it is somewhere in my car, but, at the moment, that is like saying it is somewhere on the North American continent....it's may take a serious search effort to locate that....it will be at the top of my priority list tomorrow!

As for an update, Jack was more impressed with Ned than I expected. I really thought he would be completely disinterested in him. He was pretty taken with little Ned, the only downfall is that Jack doesn't have a graceful bone in his body and everytime he tries to touch or hug or kiss Ned, it more resembles a football tackle than any showing of affection. Poor little Ned is going to have to bulk up quickly in order to survive Jack! I was also extremely shocked that Jack seems to be highly protective of Ned. The nurse went to change Ned's diaper or something and he cried a little bit. Jack acted kinda mad at her and said, "Hey, what are you doing to my baby Ned" in a not so friendly tone.

Ned is continuing to do pretty well over all. As of today, he was weighing in at 9lbs. 3oz. so he finally surpassed Jack's birth weight!! Dr. Woods said today that she expects him to back on the growth chart when he is around 4 1/2 months old (He's 3 months today). He'll in the bottom range as far as a weight percentile, but he'll at least be on the chart. I don't think he's behind as far as height goes. I haven't asked, but I know he has practically outgrown his 0-3 mos. clothing so that seems about right to me.

Ned is back on the OR schedule for 04/30, we're just not exactly sure what procedure will be performed. He is having two GI tests between now and then that will help them determine what will be best. I'm really hoping for a g-tube rather than a j-tube and I think since his reflux has been so much better, that is a real possiblity now. Other than that, we are just working on some development things lately. I am trying to teach him to nurse....the doctors have been really supportive of that and I have been surprised because they can't quantify his feedings as well with nursing. I'm thankful though because he seems to take better to nursing than to the bottle- still no major progess in this area though. He has gotten much better at being held up on my shoulder and lying on his side. These seem like such little things, but for him, it's pretty big progress. We are getting into a little bit of a routine.....trying to nurse every 3 hours and taking a bath at 6pm and to bed by 7:30. He is sleeping all night so, of course, the night nurses think he is the best baby ever!

I Promise to post pictures tomorrow. I'm still praying Ned will really start eating and maybe we could go home completely wireless?

Love you all!
Betsy, Travis, Jack & Ned

Thursday, April 17, 2008

The Results Are In......

The MRI test was sucessfully performed this morning and the results came back showing that Ned's brain structure is perfectly normal!!! Praise God, Praise God!! He went down for the test around 9am so when I still hadn't heard anything around 4:30 this afternoon, I slipped out to the main desk where Dr. McCaffery was working on a computer. I asked him if he thought it was possible that we may still get the results in today? He said, he was just looking them up then he glanced up and at and said "normal". I jumped around in the hall and Dr. McCaffery and I were giving high-5's. When I reported back into the room, all my nurses were estatic with the news. My little man has a bit of a wandering eye, but no brain defects. For the first time in 9 months, I finally feel like there is absolutely nothing looming over me at the moment and it feels great!

Ned had a couple of visitors come by tonight who haven't seen him in some time. One of the respiratory therapists fromt he PICU and the neonatologist that I saw at UNC during my pregnancy. Both of them were shocked to see Ned off of all oxygen and growing and looking so great. Dr. Ruma, my neonatologist, was even more astounded when he learned that Ned had also been diagnosed with the aorta coarctation and had been through that repair surgery as well.
We made it through another day of no spitting up.....it's a miracle. I mean, he is on reflux medications, but he has been on reflux medications. He has never been one day without spitting up multiple times, now he has been multiple days without spitting up one time. It is great and God is good.

I am going home tomorrow to get a couple things done for work and to pick up Jack. We are planning on spending the weekend in Chapel Hill. We're going to join in the March of Dimes walk in Raleigh with some of the hospital staff on Saturday and we're going to go with some of our nurses to a music festival on Sunday. And the biggest event of all this weekend is that Jack and Ned will finally meet!!! I'm so excited to see how Jack will react to finally seeing Ned face-to-face. I'll video it and try to upload it to the blog next week!

I'm heading to bed now....busy day and a big weekend ahead. I love you all for praying my son well!

Betsy, Travis, Jack and Ned

Wednesday, April 16, 2008

Much to be Thankful For!

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

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

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

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

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

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

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