The greatest news is that we are scheduled for Ned's final surgery (I know I've said this before) in the morning around 10am. He will receive a feeding tube (not sure which kind yet), then it should be a short road home! The attending doctor said today that they hope to have Ned back up to full feeds by Friday and home early next week! I am so excited I can't even begin to put it into words.

I am completely falling more and more in love with my little Ned every day! He is getting such a personality and we just spend each day playing games and working to overcome developmental delays....he thinks they're all games though! Last night I got to give him his first real bath! He loved it....see pictures below. For anyone who may not know me well, I love for kids to get a bath every night so this was a monumental event for me. I think that soaking in that little tub was really soothing and relaxing for him....I'm sure he slept better and felt like a new babe! The water was somewhat dirty for someone who has never stepped one foot outdoors. It just goes to show that a sponge bath really doesn't clean someone very well at all!

I have thought so much the past several days about how I can so clearly see God's glory thorugh all of this specifically from my hindsight view. I have been reflecting back to Genesis 33 where Moses requests to see God's glory and God only allows him to see His glory from the backside after he has protected him in the cleft of the rock. That is exactly what I have experienced.

God protected me in many ways other than just allowing Ned to survive. God held me and protected me from encompassing fears in situations on days when I should have felt like I was staring death in the face...I didn't feel it encroaching on us as closely as I should have. He kept me from succumbing to hopelessness and from feeling overcome by my circumstances. As I look back at where we have been, I never fully realized the danger through which we walked. And when I reflect on all the ways in which I have bore witness to the glory of God, it is overwhleming....from this view...hindsight that is.

I have seen His glory through my husbands heartfelt prayers, through my mother's and Travis' mother's loving eagerness to ease the stress of our situation by running up and down the roads on any given weekend and raising my son the rest of the time. I have seen God's magnificance in the medical staff that has been used to heal Ned, not only by their knowledge, but by their almost maternal insticts about my son and his condition. I have seen God's glory in the many, many emails and cards I have received from so many blessed people who have lifted my son up before the Father. I have witnessed God's grace by my co-workers who have without hesitation or complaint picked up my slack at work and done a wonderful job and by my Dad who had not only allowed me to be absent, but also encouraged me to re-organize my work efforts to put Ned's well-being first. As I look back at the path we have taken, I see God's glory shining all around and I feel "favored among men" to have been chosen to receive this blessing in my life and to have been able to experience God so poignantly. I am reminded of the following lyrics to Third Days' "Show Me Your Glory"

When I climb down the mountain
And get back to my life
I won't settle for ordinary things
I'm gonna follow You forever
And for all of my days
I won't rest 'til I see You again

Please keep Ned in your prayers tomorrow morning. Our wonderful surgeon, Dr. Adamson, hopes to be able to perform the g-tube and nissen procedure, but it just depends on how he feels about Ned's anatomy once in the operating room. Please pray for his continued widsom and discernment. Thank you all for all your love and concern. I apologize for being a couple of days behind on the posts? When I go home for the weekend, I really fall off on the blog entries.....so sorry. I'll try to do a better job once we're all back home! Love and blessings to you all.

Betsy, Travis, Jack & Ned

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

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

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!!!

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

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