"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)

Monday, March 31, 2008

Mother's Instinct

I hadn't planned on posting again today, but with the way my mind works, I may forget to the latest updates by tomorrow night if I don't share now. First, Ned has gained 1.5 ounces each of the past two days which is tremendous. They look for around 30 ounces per day and he has been gaining approximately 60 daily. I hate to say it, but you can mostly see his weight gain around his face....specifically his chin area. He is obviously going to put on weight more like his dad. If he were going to gain like me, he wouldn't still have that super-skinny, froggy-looking hind end!

They began fortifying Ned's feeds today with extra calories.....it didn't go so well. He was extremely uncomfortable and projectile vomiting from around 11am till 6pm. About 4:00 I asked the nurses if they thought it was the increase in the volume of the breast milk or the additional calories, and they felt unsure. Then I asked what exactly they were using to fortify the breast milk. They explained that it was a lactose-based powder with additional nutrients and calories. The light bulb went off in my head...."Did you say lactose based?" For those who didn't know Jack as an infant, he was extremely intolerant to dairy. While nursing, I went on a strict dairy-free diet to try to prevent him from screaming and crying in pain for hours after eating. Even at that, there would be times when something I ate must have been cooked in butter or something because soon after nursing he would completely fall off of the wagon. I eventually switched him to soy formula and he instantly became the happiest child I've ever seen. So, with that short historical background, I decided when Ned was born to go ahead and cut out all dairy to prevent him from experiencing the same problems. I knew that he may not be lactose intolerant just because Jack was, but I really wanted to prevent any additional digestion or pain issues with Ned....just felt he had enough on his little plate. I explained all of this to the doctor and relayed my fear that since this was his first introduction to dairy, it may be that he is showing an inability to digest it. Thankfully the doctor entertained the thought and removed the fortification from further feedings the rest of the night. When his 6:00 feed began, Ned finally fell asleep. He slept until I left at 8:00 and was still asleep when I called around 10:00 and he hasn't spit up one time since the fortification was removed. I am so very thankful that I thought to go ahead and cut the dairy out of my diet from the beginning or the doctors wouldn't have ever known that it was the dairy causing the severe reflux, it would have just been written off as result of the CDH.

That's all for tonight. I'm going to bed to get some rest....big day tomorrow. I'll be gearing up for my role in the NICU parent introduction video they are putting together. They have asked me to be in the movie in still shots showing how parents use different areas of the NICU facilities.....it's my big movie debut!? I'll let you know how it goes- I'm pretty sure it will be awkward.

Please continue to pray for Ned to learn to eat by mouth....the doctors are acting really skeptical that he will be able to pick up on it this late in the game. They are beginning to talk about a g-tube (a temporary feeding tube directly in the stomach) more and more frequently. I told the doctor today that I want to begin trying to feed and give it a good effort before I'll even be willing to discuss a g-tube. I've just been praying that God will return that sucking reflex to Ned, but that He will prepare me for whatever direction He chooses for Ned at this moment. Please join in that prayer with me.

I Love you all dearly!

Betsy, Travis, Jack & Ned

Happy CDH Awareness Day!!

Today is officially CDH (Congenital Diaphragmatic Hernia) awareness day. The goal is to educate as many people as possible about this birth defect which is so life threatening yet so unknown. CDH actually occurs more commonly than Spina Bifida and many other birth defects of which are much more commonly known; however almost no one has ever heard of CDH prior to their own child's diagnosis. Because there is so little awareness regarding CDH, there is also little research being done into its causes, but many medical facilites are beginning to notice a significant rise in CDH cases. Please take the time today to educate others about CDH. If you're feeling exceptionally moved by the awareness efforts, you can feel free to contact your state representatives or the governor's office to request that NC proclaim March 31st CDH awareness day. Upon the initial request, NC governor informed one CDH mother that there were too many medical problems to claim one day for awareness of any single "disease". I believe NC is the only state that has been contacted by any member of Breath of Hope that has flatly denied to declare March 31st CDH awareness day.....how embarassing!

Now, the awareness symbol for CDH is a turquoise ribbon. You may be noticing some shirts around town that read..."I wear turquiose for Ned". These shirts were designed and printed by a small group of college and high school students that God has allowed to be placed in my life for my benefit. They think I teach them, but the truth is that I totally learn from them. They emailed me a sample of the shirts they had designed last week and I was so touched and moved. They have made shirts for my entire family, Travis' family, and our Bible study teacher and themselves. There are no words for me to express the deep love I have for that precious group. I have sincerely been praying this past week that my boys will grow to be as strong in their faith and ability to show love to others at such a young age. My world is blessed to be a part of their growing in the Lord....just to watch them strengthens me!

How is little Ned on CDH awareness day....just fine. We still haven't met with the occupational therapist. I'm thinking she will surely come today! She was sick last week so she's been held up trying not to spread germs I'm sure. Ned has continued to gain weight very nicely and is currently weighing aroung 7lbs 11oz. He continues to tolerate feeds pretty well and we'll just have to see how the eating by mouth thing goes. In the meantime, he is spending time hanging out in his bouncy seat and the swing.

Trav and Jack came up on Sunday for my birthday....the big 3-0! It was absolutely the best birthday ever even though I completely dreaded it!! I was little sad and depressed when they drove off a little while ago, but I'll settle back in shortly. For my big thirtieth birthday, we went and saw "Horton Hears a Who" (very cute movie) and ordered in Chinese....very exciting stuff!! I got to snuggle up with my family and just have some normal time with them...it was the best gift I could have received.

Jack visited with Dr. Adamson this morning, but Jack's hernia wasn't detectable during the visit. Dr. Adamson said just leave it for now and if it gets worse or becomes painful, he'll operate. I'm really hoping that it has miraculously healed itself? Maybe we'll never see any evidence of it again...that would be nice.

Love and many blessings to you all!
Betsy, Travis, Jack & Ned

Saturday, March 29, 2008

Funny How God Works!?

There isn't very much to report on Ned's condition today. He has continued to do well with the feeds increase. As of this morning he is getting 36mL's every three hours...I think. I could be off course a little, but that figure changes so frequently that I loose track of where we are and what day it is?

The occupational therapist is coming today to work with Ned on his sucking and swallowing and range of motion. Because I fully realize that this hurdle is going to be our longest process, I was gearing him up for it in his sleep last night- which means I was praying over him! I was just basically asking God to allow that natural, inate instict to return to little Ned. When I looked down, Ned was just sucking away on the inside of his jaws. I thought to myself, maybe now would be a good time to offer him the passy. So I prayed, "God, if this will help him, please let him take it." He didn't even begin to open his mouth for it...just kept sucking away on the inside of his mouth. So I start asking God why Ned won't take the passy. God said,"Betsy, you asked ME to help Ned and I will, but I don't need your assistance." I found that God's reasoning made perfectly good sense to me so I took the opportunity to leave early and go to the grocery store.

I tell you all of this so I can share how God is working even in the little things like a deviation from routine or schedule. While I am in the kitchen putting up the groceries I finally took the time to go purchase, I met a lady whose 2-year-old fell into a brush fire and has severe burns (his name is Veda). As we were talking and sharing she began to tell me how she had never really given over her whole self to Jesus and how she felt God was using her situation to bring her into a deeper relationship with Him. I had the opportunity to share with her how God had worked in my life and through Ned's situation and it was really good! She'll be here for several months so I'm sure I'll be seeing lots of her. But, if I hadn't listened to God telling me that he was capable of tending to Ned all on His own last night, then God wouldn't have been able to use me at the RMH to speak to a woman who is seeking!! I'm so glad I left Ned....it allowed me to catch another glimpse of God which is always so exciting....back on a mountain top!!

All I have to say today is Go Heels!!!

Love and Blessings to you all-
Betsy, Travis, Jack & Ned

Friday, March 28, 2008

In For the Long Haul

This will be really short and sweet as I'm walking out the door to go to the hospital. The doctors assured me yesterday that I would be here for the March of Dimes walk on April 19th, in fact, they assured me that I'll be here at least another month? Oh Well, at least I know what to expect. I think God could get Ned moving quicker if He wanted to....we'll see.

Not much change yesterday. Ned didn't gain any weight, but considering they had given him extra doses of a diuretic to dry out any potential fluid on his lungs (a concern with the temperature he was running), they said it was good that he didn't loose any weight. They weighed him again last night so I'm anxious to see how yesterday did for him.

They continue to increase his feeds every 3 hours by the feeding tube. He should be up to 32 mL's as of this morning at 8am. They have him at a goal of 65mL's so we're about a week away for hitting that mark at our current increase rate. He has tolerated the increases well and I'm so thankful he hasn't experienced any serious reflux issues. The occupation therapist didn't come by yesterday...I'm going to push for that a little more today. Our doctors put in the order, so I'm not sure where she was?

That's the highlights. I'll post more details tonight. Lots of love!

Betsy, Travis, Jack & Ned

Thursday, March 27, 2008

Such a Little Trooper

Yesterday started out a little rough for our little man. He was running a low grade fever and it seemed to have him completely out of sorts. He wasn't extremely agitated, but much more so than normal. Our nurses were really commenting on it because they say his temperament is normally so much more docile and accepting. Even yesterday, he really didn't cry much at all. He just restlessly squirms in his bed and looks at you with that very serious face, but I know he is uncomfortable because his heart rate and respiratory rate were running pretty high. His fever broke around 3pm and didn't return. He rested most of the rest of the day- I'm sure he was zonked after being so worked up all morning.

They have continued to increase his "dump"feeds steadily with no problems. He is now receiving 23mL's via the feeding tube every three hours. Today Ned will start working with the occupational therapist on learning to suck, swollow, and breathe and they'll work with his range of motion. Because he has spent most of his time in a bed and hasn't been moved around very much, he is as stiff as a board. They want to work on stretching his muscles a bit. I think the stiffness in his arms is one of the reasons they sent off yet another genetic test. I don't believe that he has a genetic disorder, but I think they're just wanting to cover all the bases. I'll be glad when we don't have any more of those looming over us anymore though.

I spoke with Dr. Adamson (our surgeon) last night. He said that he felt sure that if we were going to run into any major issues with this last surgery (like finding another unknown blockage), we would have seen some evidence of it already. So, I'm so very happy and thankful to be able to report that it seems that we may have finally gotten all Ned's anatomy back to some semblance of normal- at least it is functional!!!! I will be bringing Jack up to meet with Dr. Adamson on Monday. For those of you who don't know, they found a hernia in Jack's groin about a week before I came to Chapel Hill to deliver Ned. I have just pushed his surgery off as long as possible and have decided just to bring him up here where I know the surgeons so well. Plus, it will be easier for me to have both my sick children near me rather than spread across the state.

Other than that...things are going great. I am planning on setting in on a real routine up here in the next couple weeks. I need to get back in a habit of setting myself some timeframes for Ned, work, exercise, and time with the Lord again. Lately, I've just been floating through each day and I'm feeling like a live in a time warp. I began my study time again yesterday and was, of course, amazing at what the Lord showed me when I took the time to listen to Him.

So far so good, all the digestion prayers are really working for Ned. I am going to ask, in a very round-about way today, how long our doctor thinks we'll be here. There is a March of Dimes walk on April 19. I think I'll tell Dr. Woods that I'm planning on walking with them if I'm still here, then I'll ask if she thinks I'll still be here!! I'm so hoping she tells me not to make big plans for the walk, but I think she may very well tell me to put on my sneakers! We'll see.

Thank you all for your continued prayers and support. Much love and many blessings to each of you!

Betsy, Travis, Jack and Ned

(I took some pictures yesterday, but they weren't that great so I didn't post them. I'll try to get some of him in his bouncy seat today and post tonight!)

Sunday, March 23, 2008

Change of Plans

Ned is recovering from surgery quite well. He finally had a bowel movement and began feedings again this morning. He started off with a little pedialyte, but has progressed to breast milk. So far so good, no spitting up.....yeah!!! Mom and Dad have been hospital duty over the weekend while Travis and I came home so I've just been getting 2nd hand reports. The last word in is that Ned is loving the vibrating bouncy seat I sent up there this weekend and is resting really well in it. I was thinking that the vibrating motion may help keep any fluids from settling in his lungs when he was so sedated last week, but now he is back off the pain medications again, Yeah!!!, and the seat is just serving as a place of comfort.....which is great! The poor child deserves a little luxury treatment, I think.

I had planned on going back up to Chapel Hill tomorrow, but I have developed a head cold. So, Travis will have to fill in for me until it passes. I'm just thankful that it didn't really develop until Saturday so I think I should have been away from Ned long enough not to have passed it on. I started to worry about it, but I remembered how much God had protected him from so far and figured a cold wasn't beyond His capabilities.

As I mentioned before, I have spent much more time this Easter reflecting on the crucifixion than before. I have found myself identifying more and more with Peter than ever before. I used to sorta see him as a traitor for denying Jesus until I realized that every time I don't glorify God for the blessings in my life before others, I too am denying Him. I have thought a lot about how Jesus must have been preparing those disciples for their mission after He left. He knew that if those twelve didn't carry the message forward, the rest of us would perish. When you look around at Jesus' influence today, it can trace back to the obedience and faithfulness of twelve men. Isn't that amazing? I wonder if Jesus would have or could have chosen me for such an awesome task and responsibility. He knew they wouldn't fail, but He knew they would stumble. I've just thought how He must have been praying over them knowing what they would endure and loving them so for it! The one thing I have learned about Jesus is that His plans have existing from the beginning of time, they are enduring and they are perfect. He knew those twelve before they were created, He knew their purpose, He knows ours.

I watched a sermon this weekend that speaks to His plan for us like nothing I've ever known before. If you watch it, you will understand more than ever how God has always had a plan for our salvation since the beginning, since creation. If you can possibly take the time to find this sermon and watch it, please do. It is "How Great is Our God" by Louie Giglio. I know you can find parts of it on youtube, but you can probably find it in its entirety on the web somewhere. It was a real eye opening experience for me. It defines the purpose of the cross in a new metaphysical perspective.....wow!

Much Love,
Betsy, Travis, Jack, Ned & Margaret

Friday, March 21, 2008

Beginnings of a Comeback

Ned began on his road to recovery today. It began with extubation first thing this morning. He was put right back on the vapotherm at 3 liters of pressure which was exactly where he was just prior to surgery. He was stating at 100% tonight so I imagine they'll continue weaning him on his pressure again tomorrow. If I can say anything about Ned today it is that he has gotten some really good rest....almost too good! When Travis and I visited this morning, we decided not to hold him or mess with him today since he was sleeping so well. We just wanted him to be able to recouperate from the surgery without us causing him further pain where he received his latest incision. So, during the morning visit, we just looked at him for a couple hours. That truely is a blessing most people really don't experience with their children. I know with Jack, I would watch him sleep for a few minutes, but then I would take that time to try to make some headway in my "to-do" list. I spent most of the time he slept, washing clothes, taking a shower, making beds....just daily chores. However, since I have absolutely nothing I have to do on a daily basis here, I have spent entire days doing nothing but looking at my son rest (or struggle-depending on the day). In that time, I have learned so much about him. I know which side he prefers to lay on, his favorite song ("God Will Make a Way"), how he likes to keep his arms up at his face, how he cannot stand a even a damp diaper and how he roots his head up into my hand when I lay in in the bed and he is wanting to be held. I'm not sure if I missed those clues with Jack because I was a first time mother and the least little sign he showed of discomfort, I panicked and called my Mom to come help me or if I just wasn't taking the time to pay close enough attention. At any rate, I am thankful that I have been able to really know Ned at any early age.

When we returned to the hospital tonight we found a child that was so drugged up he had neglected to cough and clear the secretions out of his lungs all day. We couldn't get him to awaken at all so they cut his pain medications some more and put Travis and I on physical therapy duty. All that basically means is that we rocked Ned and beat him on the back for hours to try to break-up any congestion in his lungs and stimulate him enought to provoke him to cough on his own. Travis went first and although he was somewhat unnerved at first, he became quite comfortable swating little Ned on the back. After almost 4 hours of the therapy session, we went to put little Ned back in his bed (with the nurses help). As soon as he got back in his bed, he began de-stating. His stats were hanging in the upper 70's to mid 80's. Our nurse was suctioning his lungs and getting up some fluid, but then the respiratory therapist came in and noticed that the vapotherm had become disconnected....he wasn't getting any air? Once she hooked him back up, his stats jumped right back up to 100%!!

One more thing....have I mentioned how I love very specific prayers and how I love to see them answered. I had requested that everyone pray that Ned will be able to learn to suck and swollow and tonight we got a little foretaste of his ability. When he had gotten really upset during the de-stat episode, so Travis went to offer him a passy when it was over. I was thinking that he was going to get more upset since he has always clamped down like Fort Knox and rejected sucking on the passy in the past. However, much to my dismay, he sucked on the passy for about 5 minutes (sucking and swollowing)....just one day after I began to pray for just that. How precious is God and faithful to his followers.

Please keep the prayers coming- they're obviously working!

Love you all!!!
Betsy, Travis, Jack and Ned

Wednesday, March 19, 2008

All surgery is now a thing of the past!

We are so thankful to be able to report that Ned's final surgery went as seamlessly as the first two- Praise God!! As usual, it lasted much longer than expected, but I think that is mostly because our surgeons are so "unapologetically anal" (their words, not mine) and I am so very grateful for their attention to detail! They were able to repair Ned's bowel through the existing opening where his ostemy was exposed, which was the best case senario causing the least stress to and invasion of his bowel area. Hopefully, that will allow him to start healing and digesting again in the very near future. Since the lower portion of his bowel has never really been used, they have told us that there may be some complications of which they are unaware, but they haven't seen any indications to cause suspicions of future problems so we'll just take that as the first step in a very positive direction. He is still on the ventilator, but they plan on extubating him tomorrow. They just wanted to give him through the night in case they felt the need to really sedate him which may have caused his breathing to be more shallow and could affect his oxygenation. So far, they certainly haven't over sedated him. Ned has built up quite a tolerance to the narcotics and the NICU doctors aren't as liberal in their dosing practices as the PICU so it took them quite a lot of "baby step increments" to get him restful following his surgery. When we got back to his bed, he was wide awake with that breathing tube down his throat. The poor child was extremely agitated, but, of course, he couldn't really cry with the tube back down his throat. I was extemely relieved when they were able to get him settled down a bit with the drugs.

I was also very surprised at the relief I felt following his surgery. I think I really had my "game face" on going into this once. Logically, I understood that this surgery wasn't near the major operation as the first two, but I felt some real uncertainty going into it. I kept having fears that I was expecting too much from God. Not that God couldn't provide, but that at some point, I will have used up all His blessings for me and my family for a certain time period. Almost like I felt that each person only received a certain allotment and I must be near the end of mine? All I could do was pray through it. I prayed that God would continue to show Himself in a real and mightly way through Ned's healing and that I would have complete confidence in His faithfulness to my son. But the sheer lifting of the burden that I felt once Dr. Adamson walked through the door showed me that I hadn't let go of the fears as well as I thought I had. I was still harboring them and carrying them around with me and I see now that I have burdened unecessary weight. As a follower of Christ, my yoke should feel easy and my burden light.....my problem was that I continued to carry what I should have laid down at the foot of the cross.

When I was little we lived beside my grandfather, Papa Ned. When I would leave his house and head home at night I would start walking. There was a lamp post set in his yard that I always passed on my way to our side door. As I began my journey home, I always felt very strong and confident from Papa Ned's front porch to the lamp post, but once I passed the lamp post and the light was behind me, I became fearful of the night. I imagined all the terrible things that could be at the edge of the woods just behind our houses. So from the lamp post to my house, I ran! I mean I ran like something was chasing me and once I got home, it was such a feeling of relief to see that nothing was close to attacking me...I was completely safe. This is how I have felt this week. I felt like I had gone past my mountaintop experience a bit and had settled into a bit of a routine, but once I had passed that glorious glowing tall light, I began to be overcome by my fears. And it wasn't until today when Jesus showed me how I had always been protected and kept safe that I found my comfort and relief in knowing that I was home....living and walking with my Savior.

I believe that our prayer requests will mostly revolve around Ned's eating and digesting issues. For now, we're praying that we'll be able to work through some exisitng reflux issues and that he will begin to learn to suck, swollow and breath all at one time while taking in enough volume to grow. Please continue to pray that Travis and I won't get so focused on Ned's clincial condition that we begin to neglect the spiritual health of our family. It is important that we continue to leave Ned in the hands of God and allow Him to use our family for His purposes even now.

We love you all and we are so humbled and thankful for all the love, prayers and support (I just can't say it enough)!!! As we look toward Easter this holy week, I have a greater understanding of the miraculous work of Jesus while He walked this Earth and deeper grasp of what a sincere sacrifice it was for God to "plan" for His son to suffer and die. This experience with Ned has shown me much and for the first time, this Easter will mean much more to me. My focus will not be on what Jack wears to church or what we eat for lunch, in fact, I haven't picked up one thing for an Easter basket. I just want to start now teaching my boys about the resurrection in a way that they may not ever take it for granted in the way that I have in the past. Happy Easter everyone!

Much Love!
Betsy, Travis, Jack & Ned

In Surgery

Just wanted to let everyone know that Ned is in surgery now. We arrived at the hospital early this morning in time for Betsy to hold him for about an hour before they wheeled him to the OR. They took him back about 10:00am, and said the surgery to put the ostomy back in and to go ahead and circumsize him with take a few hours. We'll post and let everyone know how everything is as soon as we get a chance. Thank you again for your prayers.

Travis, Betsy, Jack, and Ned

Tuesday, March 18, 2008

Awaiting Surgery

I have joined Betsy for the week in Chapel Hill, and Ned is still doing well. I got to hold him for the first time in a few weeks which was great. He actually gained a little weight over the weekend, which we were getting concerned about since he was on somewhat of a backword slide. He gained 40 grams which is a little over an ounce up to Sunday night, then gained another 20 g Monday. Hopefully when they put his illiostomy back in tomorrow (Wed), he'll get the Dellinger/Agner appetite going and really pick up some weight so they rest of his body/organs can grow. For now, he's in a little spit up mode, and Betsy is certain it's her breastmilk making him coliky like Jack was for several weeks. The doctors are just thinking it's normal spit up for now, and maybe that it's just the change back to breastmilk. The NICU ran out of breastmilk while Betsy was at home this weekend and started him on formula, so now we've hauled the milk truck back up to UNC to resupply them. We have been storing the milk at home since the NICU/PICU started running out of room.

Betsy and I have just been in awe with all the prayers being lifted up for Ned and the rest of our family. As we look back at where we've been so far on this journey, it is just awesome how evident it is that God has been, and is in, control of this situation. Looking to what lies ahead, we are confident He will continue to work in Ned's life. We continue to ask for your prayers for our family and the journey that remains.

Well, we're heading back to the hospitol, so we'll post later on.

Thanks again,

Travis, Betsy, Jack, and Ned

Sunday, March 16, 2008

Final Surgery Scheduled

Ned will have his ileostomy put back down on Wednesday. Because he is still struggling with nutrition and weight gain, the doctors feel that getting him put together again is key to his recovery. Ned has only gained 5oz. since birth, but he has grown almost 2 inches, so he is extremely skinny! It is also important for his body to start absorbing enough nutrition so his body can grow his lungs and regenerate liver cells that were damaged by him being on IV nutrition for so long.

I am feeling extremely anxious about this surgery for some reason. It would be considered a substantial surgery; however, not as risky as his first two. I think I'm so afraid because Ned is so much better now, I fear a backslide. He is wearing clothes and waking up and I'm really getting an opportunity to get to know him. When he had his first two surgeries, we had nowhere to go but up, because he was so unstable. I have been thinking about the Israelites in the desert a lot this weekend. When they were wandering in the desert and had nothing, their faith and trust in God was much stronger, but when they got to the edge of the promised land, on the verge of receiving the fullness of God's blessing, they became too afraid to face the giants in the land. I want to have the courage to receive God's blessing and to believe He will deliver Ned just as He has shown me that He will. But I am learning that fear is a very powerful influence. When facing fear, I find that my focus has to be completely on God or I find myself completely focused on my fear. I am in that tenuous place now, but I am praying that I can continue to believe in His promises!

Please continue to lift Ned up this week in your prayers. His breathing has come a long way, but in order to conserve calories, they have ceased weaning him any further at this time. He'll most likely have to go through the whole weaning process again anyway since he'll have to be intubated for the surgery. Hopefully, since he is stronger now, it won't take was long. Mostly, please pray that this surgery will allow Ned to start absorbing more of his food so he can start growing and healing.....that's our biggest hold up at the moment. But, now that we are back in the NICU, that is what they will focus on and that is where they are the experts.

Thank you all for your continued love and support.

Betsy, Travis, Jack & Ned

Wednesday, March 12, 2008

One Crazy Day

Yesterday was quite hectic in Ned's little room. We had some issues with the air tube from the vapotherm again. Everytime I looked down, that tube was in two pieces and poor little Ned wasn't getting any support. I tried to hold him and the airway tube, but he had already gotten so worked up working so hard to breathe that he was moving way too much causing the nasal cannula to pop out of his nose which didn't help matters at all. I finally put him back in his bed and called the respiratory therapist to replace all the tubing. It turns out that the nasal cannula he was using didn't match the vapotherm tubing and that's why it kept popping off.....good to know! They had also been trying to wean him off the vapotherm yesterday, but with all of that going on and the weaning reductions going a bit fast in my opinion, he ended the day back up at 5 liters (he'll need to get down to 1 liter to transition to the regular oxygen/nasal cannula).

After we worked through all those respiratory issues yesterday, Ned had some vomiting problems last night. Around 8:00 he began acting really unsettled and uncomfortable. He was just jerking around in the bed, his heart rate and respiratory rate were on the rise and then he started retching and throwing up. It definitely wasn't spit up like I used used to with Jack. You know, that kind of comes out of nowhere. One minute you have this smiling happy baby and the next second, spit up is everywhere, but the baby seems to be totally unware that the event has occurred. This was more like an adult would wrecth down deep before being sick with a stomach virus. His little body would heave and heave and then just a little bit of milk or medicine or whatever would come out. They finally stopped his feeds for a couple hours to give him a rest. They were going to restart them at a reduced rate until this morning when they plan to lower his feeding tube past his stomach into the upper most part of his intestine. When I spoke with his nurse last night around 1:00, she said he had started acting very agitated and uncomfortable again, so she gave him an extra dose of ativan and he was resting fine after that. I am really praying that the lowering of the tube will help him today because it is terrible to watch a child his size hurt and struggle.

Ned's personality doesn't help me feel any better either. I am learning that Ned is a very serious child. He gives me this furrowed brow look all day whenever anything isn't going well. He doesn't really cry much at all, he looks more perplexed and concerned over his current condition. Even when he's feeling good and I try to play little games with him, he gives me that same look of complete disinterest? I even noticed yesterday that when he smiled in his sleep, he immediately caught himself and replaced the smile with a disconcerted frown. I, of course, found that extremely funny.....but he, of course, didn't.

On a kind of positive note, at the moment the PICU is full. If any emergencies come in, Ned will be transferred to the NICU. That is promising because that means he is the least sick child in the pediactric ICU at the moment. I'm just in such a routine and comfort zone there, I hate to have to leave. The vacancies may change at any minute and that plan may go out the door (sadly to say), so we're just taking it as it comes at the moment. They didn't call me last night, so I assume he'll still be in his same room when I get there this morning?

Hopefully, a speech therapist will be by today to start working with Ned on learning to suck and swallow- that would be a huge progressive step for him. The surgeons are wanting to postpone his final surgery until he is absorbing more of the food he is taking in. They made adjustments to the breast milk yesterday and believe this will help him. I don't think he output as much yesterday either so hopefully that problem may soon be corrected!

Our same issues still remain, breathing and eating. Please continue to pray that God will begin to allow Ned's body to function in the way in which it was designed. I have no fears that God can't or won't heal Ned's body, I know it will all be in His ordained timing. I believe that timing is for purpose and I'm just praying that I'll be able to seek and find His purpose in His plan. I don't want to leave this place in my life and feel like I missed any of what God had in store for me, but sometimes I get caught up in the medical here and I forget to look for God at work around me. Today I am praying for clarity, so I can discern God's call from life's distractions. I have to remember that I can't fix Ned, only God can, but He will use me for other good if I allow Him.

Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

Tuesday, March 11, 2008

Waiting and Watching

Although we had hoped to be able to meet with Dr. Adamson today regarding putting Ned's bowel back in his stomach cavity, he wasn't in the hospital due to several late night emergency surgeries. From a practical viewpoint, I can see how we weren't his priority! He sent word that he would come by to discuss it with me tomorrow and I really appreciated him making sure that I was kept informed, he could have easily just not shown up until tomorrow- I really wouldn't have thought that much about it? Hopefully we can get setup for that final surgery tomorrow....we'll see how it goes!

Otherwise, Ned had a pretty good day. We had some real troubles with the tubing for his oxygen. It kept coming apart and I would suddenly notice that I couldn't hear the air flowing out of the nasal cannula. Sure enough, when I would look down, there would be the air hose just dangling in the air, not connected to the vapo-therm at all. Needless to say, I unnecessarily panicked. I was in such a furious hurry to reconnect the air hose, that I have gotten it completely tangled with all the other wires. In fact, it occurred several times and by the end of the night, I could hardly get the child back in his crib for the massive knot of wiring that needed to be placed "comfortably" in the bed with him? They also reduced the flow on the high-flow oxygen he is currently getting. When I left, his oxygenation stats had decreased some from like 100% to 94%. I think they will either start to trend back up, or they will start to trend downward, in which case they will increase the flow agian......this breathing is such a process for him! The child is not a fan of change in any way, shape or form- it is a trait he inherited from his father!

I have met a wonderful follower of Christ up here, her name is Melissa. Melissa is one of the few people I have ever met who naturally instill a sense of joyful peace in you as you speak to her and watch her face. Her son, Joel (pronounced Joe Elle) is in the room beside Ned. Joel is in the 8th grade and is being treated for a gunshot wound to his head. Melissa and her family are believing God is going to heal Joel and I have been blessed just to have met them and been given the opportunity to witness thier faith. Please pray for Joel. Melissa firmly believes God has given her this trial to teach her joy in the suffering. Please also pray that she will be able to experience that joy....I certainly know she spreads it!

That's the thing about the PICU, it is a group of families all dealing with serious medical issues that nobody ever thinks they are going to have to face. There is another child on the unit who has had a serious allergic reaction to penicillin and his skin is eroding off his body. Another infant girl is on ECMO. When I walk by her room I am so reminded of why I prayed so diligently that God not allow Ned to need that treatment. Although it is such and extreme envioronment, wrecked with stress, in ways I love being here. I may have developed that mental/behavioral disorder like when kidnapped victims begin identifying with their abductors....I often think that is possible! The truth is that this place is where I have last seen God so clearly and I feel drawn here. There were many examples in the Old Testament where people would return to places where they had built alters of remembrance. They were clinging to those times and places where God had revealed Himself and made Himself known to them. I understand that affection for a place now like I never did before.

One last thought for the night. I was walking and running a bit tonight (very well may not be able to crawl out of the bed in the morning), and I was reflecting on that book I read in college "In His Steps". I love the entire concept of the book because it is just about a group of believers who choose to start living their lives just like Christ. To seek the will of God in every small detail of their lives and to seek how that will change their lives and the lives of those around them. As my mom would say, "I was daydreaming that" it would be amazing if people would really make that change, that commitment. I see how each persons obedience makes such a difference for others, how much more would the obedience of the masses make a difference in this world? As I arrived back at the hospital, I saw a group of kids being driven around on a scavenger hunt...it brought me such joy. My mom used to organized really detailed scavenger hunts for us, in fact, that was what we did for my 16th birthday party. I always loved the excitment over finding the next clue and then rushing as quickly as possible with the group to try to find the answer and get to the next clue.... For me, the fun of the adventure was endless. Then it all made sense to me, that's what it would be like if we all lived in obedience seeking God's will at every small turn and making decisions for Christ rather than for our finances or appearances or any other short term high of life. We would be working together to seek out God's great adventure and once we received the joy from being used by Him in one area, we would be excitedly anticipating what He would lead us to next. It sounds so fun and joyful, wonder why we don't all choose that path everyday?

That's all for tonight, I must get to bed. I love you all dearly. I appreciate your williness to continue to pray for our child and your interest in his life. I hope you all have a glorious day!

Betsy, Travis, Jack & Ned

Monday, March 10, 2008

1st Trial a Success

Well, I'm finally back on-line. I had planned on posting from the hospital computer in the PICU parent waiting room, but someone had re-booted it and no one knew the login password. So it is currently, and indefinitely, locked up at the login screen? Once I plugged in my laptop tonight, the latch to open the lid was broken off and I couldn't get it open. So close to being able to retrieve my email...it almost sent me into a panic. Then, being so very resourceful, I used my earring to unlatch the computer. I think I may have a future as a either a burgular or a CIA agent!

Ned's first trial on the vapo-therm has gone wonderfully. He looks so much more peaceful now than he did the first time he was on it. I can really tell his muscles have built up and breathing is less strenuous for him. He still needs to step-down to the regular oxygen nasal cannula, but now our main issue is nutrition. Ned is loosing weight because he is unable to absorb very much of his feeds because his body is still emptying into the ostemy prior to going all the way through the digestive tract. So, we're planning on having a nutrition consult tomorrow, as well as, meeting with pediatric surgery to decide when to put the ostemy back in (our final surgery!!!) Personally, I would just rather go ahead and put the ostemy back in and move forward from that point because they are going to have to re-intubate him for the surgery. The weaning process shouldn't be as long, but we could be working on that and bottle feeding while gaining weight through the feeding tube? We'll see what Dr. Adamson (our surgeon) says tomorrow? Please pray that God will be in control of all decision-making to ensure that we stay on the course He has set for us. In the meantime, Ned and I are enjoying sitting around together and snuggling in the recliner!

I know I mentioned that the other day in the PICU was nuts.....actually, the entire latter part of the week was no picnic! I was talking with one of Ned's nurses who had been with a baby who had had a very difficult day. She made the comment that her child on Thursday may have been a tad bit more problematic than Ned's worst day when she was his nurse. I kinda laughed and said "surely not that bad", but several hours later, that other baby died. It wasn't really until that moment that I realized how close we had been to loosing Ned that day. I believe that God protected and sheltered me during that time. I knew things weren't good that day and that they were having a difficult time stabilizing him, but it hardly crossed my mind that they wouldn't be able to stabilize him or that he was verging on plummeting past the point of salvation? I am so thankful that I didn't understand then and that I was able to look past the immediate circumstances to the promises of God. It is in such reflection that I see God's hand guiding my life and I am overwhelmed at the protection we, as His children, are given in His grace!

As you continue to pray for Ned and his breathing and eating challenges (thank you, thank you, thank you), please also pray for Trent Hopper. Many of you know him, he is the son of Theresa Hopper (Mrs. Hopper the choir teacher for those of you who attended South School). He is at UNC hospitals battling colitis (not real certain on that spelling). He has been dealing with it for a year and they are praying for a healing to avoid surgery. Please add this to your prayer list and include his wife Chloe. They are still somewhat newlyweds and are facing a great deal of obstacles in their lives right now.

Thank you all for your continued support and prayers. Much love and many blessings to you all!

Betsy, Travis, Jack & Ned

Friday, March 7, 2008

Busy Days

I first want to apologize for not posting for the past several days...I have come back to Chapel Hill without the power cord from my computer so I'm not as "wired" as normal. Travis is mailing it to me today so I should be back on schedule tomorrow. The plan was to put Ned on the high-flow nasal cannula yesterday (vapo-therm), but the PICU was so very busy that they didn't have time to watch him as closely as they would like. I was perfectly fine waiting. I am just so thankful to finally not be the kid who is requiring so much attention. There are a lot of really sick kids here right now and one baby didn't survive yesterday. The PICU is so extreme....things are either miraculously wonderful or overwhelmingly sad. As of right now, they are going to switch Ned over to the vapo-therm some time today. I am just praying that his body has gotten strong enough to hold that little left lung open now! Once he can maintain on the vapo-therm, they will step him down to a regular nasal cannula and then we can leave the intensive care unit. For me, that's a little bitter sweet. I'm ready to get home, but I have grown to really love the people who work on this unit and who have shown such love and compassion to my son and myself. What a fantastic blessing they have been to my life. I was actually kinda glad to get back up here this week.....I missed Ned and the hospital staff? How crazy is that?

Quick question, have you ever gone through a really ugly phase in your life. Like one day you look in the mirror and you're just not really happy with anything about yourself. You feel fat, your hair-do isn't suiting you, you're pale, etc. I've been in a place like that lately and the other night, I attempted to help myself a bit- you know, I used an emergency mask and some extra special moisturizers- cause that should fix 2 months worth of neglect? Anyway, when I was driving back to Chapel Hill, God showed me where I was ugly spiritually. I always tend to pay more attention to my outward appearance than my inner? The first day Ned moved from the NICU to PICU, he had that heart cath test. The surgeon told us we could wait in his room and he would come back there once it was over. Travis and I had stepped out for coffee and when we picked up the phone to get access back into the PICU, the lady on the phone told us to wait in the waiting room till Ned got back. I was very snippy with the woman and she did let us back into his room, but I spoke to her in a tone that wasn't kind at all. It wasn't so much what I said, but the tone in which I said it and the rage that was welling up in me as I was speaking to her. I'm still unsure who it was I spoke to that day, but after God showed me this the other day, I have attempted to apologize. I gave my apology to Deborah who typically answers the phone during the day. She has assured me that she doesn't think it was her, so I've just asked her to let me know if anyone mentions it so I can let them know how sorry and embarrassed I am for my behavior. She said not to worry about it, but I just let her know that God has called me to be better than that to others. Now I feel like if I confess it before all of you, I'm getting a little closer to truly apologizing? Thanks for being my ears!

Please just continue to pray for Ned today......God is working many miracles through his little life and I am just blessed to be a witness to it! Thank you all for enriching my life with your own testimonies of faith. I can't begin to express all my thankfulness to you all for all your love and support. The enormity of it consumes me daily and it sustains me!

Betsy, Travis, Jack & Ned

Monday, March 3, 2008

Spring Cleaning

We have spent the past three days cleaning everything we own and moving into our house we have been renovating since August. Travis' mom and my mom have been staying with Ned in Chapel Hill- we are blessed to have such an extensive support system to allow us to keep our bases covered at all times. Ned has been doing wonderfullly. His feed are up to 22cc's per hour and the plan is for him to start taking several hours at a time off of the CPAP tomorrow and trying the nasal cannula again. They said this is a slower weaning process which they refer to as "sprints". I'm really hoping they go well, but I can't complain regardless because he has done so well! When I get anxious or discouraged, I just look back at the pictures when he was all but completely wrapped in wires and I am just so thankful, that's all I can focus on. Ned's chest x-rays are looking a little better each day- thank you all for all your prayers they are truly very evident each with each hurdle Ned surpasses!

I found it very perplexing today that we scrubbed everything we took into our house this weekend. Although most people clean thier possessions before moving into a new home, cleaing our stuff seemed so ironic when I thought back to how Travis first refered to the house as a "dump" we I mentioned that I thought it might be a good idea to remodel it? When I think about how that house has progressed, it has reminded me of how Jesus works in our lives. The first thing we did was completely gut the house. I mean we knocked down walls, stripped wiring, replaced plumbing- the works, but it was necessary for us to be able to rebuild and restructure the "dump" and transform it into a home. When God first starts working in our lives, he has to clean out the junk and trash in order to transform us into a new creation- the mustard tree.

What is very interesting about the parable of the mustard seeds (Mat 13:31-32) is that mustard trees do not exists. Mustard seeds should develop into a mustard plant which is basically a weed-like plant; however, in thae parable the mustard seeds grow to be trees in which birds of the air can find rest. In other words, through faith, we can be transformed into new creatures who offer rest and comfort to those who are lost. How cool is that!

Well, I must go to sleep now before I loose consciousness while typing. Thank you all for all your prayers. I let you know how he does on his sprints tomorrow!!!

Betsy, Travis, Jack & Ned

Saturday, March 1, 2008

A Lesson in Patience

There are fewer and fewer daily updates for which I am very grateful since such frequent changes were characteristic of a time when Ned was really unstable. Now we are experiencing slow and steady progress. For me, it is so difficult to see the other side and not be able to get there? Ned's lung looked a little better yesterday, (thank you for your prayers) and he has continued to do really well as far as his other stats! I don't think they'll contemplate re-intubating as long as he continues to be able to support his body from a pulmonary standpoint regardless of current concerns from the x-ray. Having said that, I'm still hopeful that his little lung will clear up and reinflate. It seems to me that if he can do so well with only one lung inflating, he should really be able to make some headway with two?

The past week has really been teaching me a lesson in patience (which by the way is a lesson I wasn't really seeking to learn). I remember when we were going back and forth with when to schedule Ned's heart surgery and Travis looked at me one day and said, "Well, we've been praying for patience." My stomach dropped. In a completely shocked tone, I asked, "have you been praying for pateince?" He confidently and proudly assured me that he had. Then Travis asked if I hadn't prayed for patience as well? I absolutely had not ever prayed for patience. When my Bible teacher told us one afternoon that when she started praying for patience, God allowed her to go through an experience to teach her patience. In her circumstance, her terminally ill father-in-law lived with them for years and she took care of him while he was physically deteriorating. That sounded like more than I was interested in enduring just for a little patience, so I decided then and there that I would never pray for patience. Now I realized that my dear husband had voiced a prayer that I was intentionally avoided and drug me into learing a lesson I had decided to bypass....marriage is a beautiful thing?! Travis laughed when I explained to him that I had tried to opt out on the whole patience deal. Both of us knowing that God will continue to work in your life regardless of your personal hang-ups and short-comings. I do believe I will learn patience during this experience and I am certain that my life will be blessed exponentially for having been held at bay for a period of my life.

Ned continues to improve a bit every day. He is up to 20cc per hour on his feeds and he is down to 25% oxygen (21% is room air) on the CPAP. We just have to get the breathing and eating down pat before we can go home. One amazing blessing is that Ned has never thrown up from eating. They expected him to have a difficult time digesting due to that fact that all of his digestive organs were misplaced at birth. Since they got his withdrawal symptoms under control, Ned hasn't thrown up one time! He may experirence more problems with that when he starts bottle feeding, but for the moment, he's doing great! I'm not sure if they are going to go ahead and schedule the bowel repair surgery while we're still up there or not.....it honestly hasn't been mentioned. In a way I'd like to come on home and in a way, I'd like to go ahead and get everything fixed? I'll just let that works itself out in God's timing. It's a little easier to hand things over to God and His schedule when you have no clue about the situation at hand. I mean, I may be more pushy and controlling if my child were dealing with issues I thought I could fix, but since I have know education or experience in the medical and surgical field, it makes it easier for me to trust God rather than relying on my own understanding.

Please continue to pray for little Ned. I look forward to the days of his life when all of you will be able to tell him how you knew and how you remember God working so clearly in his life. I believe each of you will be my children's memorial stones that will begin to build their foundation of faith in their lives. Thank you!

Betsy, Travis, Jack & Ned