The Journey Continues

There is certainly a part of me that had hoped never to post on this blog ever again. I had basically used this format as an outlet to express, not only Ned's current medical condition, but also, how the Lord was working in my life and heart through those situations. I was definitely living in a place where I assumed all those times were behind me. There was a part of me that was missing feeling the closeness of the Lord in my life, but I wouldn't have opted to return to a critical care unit to rekindle the relationship?

On Sunday, July 5, Ned nearly drowned in the bath. Since then he has been at Levine's Children's Hospital in Charlotte and is in critical condition. I am at a complete loss for how I feel about our current situation and about my sick child. I am completely and utterly wrought with guilt. I have apologized to Ned a million times in that hospital room and to my Savior for being so irresponsible for such a precious gift in my life. I am coming to a greater understanding of guilt and its crippling affects on the spritual lives of people.

I have always thought that I understood why people who had made terrible "lifestyle choices" had a difficult time letting go of their guilt and accepting the forgivness of Jesus; however, my "understanding" was extremely abstract and distant, at best. Guilt oppresses you in a very internalized approach. I don't feel like I deserve to take my guilt to the cross and lay it down, and for that matter, I don't want to. I don't want to feel better while my son is struggling to live in a hospital bed. The most difficult concept for me to grasp at the moment is that I have never "deserved" to take my burdens to the cross....it was never a priviledge I had earned for any good merit or behavior. When you have to watch your children suffer for your misgivings, you desire to suffer as well. I know every parent in the world will tell me that it could have just as easily been their child, but it wasn't....it was mine. It's not that he went under that haunts me at night, it's knowing that when he couldn't help himself, he was desperately wanting and needing me to rescue him and I never came.

I am asking everyone to pray for Ned. I am praying for his peace and comfort....that is what I most desire for him. While every fiber of my being wants him back on my hip, clinging to my shoulder, I most want him to feel the peace of God. I have more that I would like to share about how God prepared me for this latest journey, but I don't have the endurance tonight to relay it...hopefully tomorrow. Much love and many blessings!

Betsy

What a Difference a Year Makes!!

Who can believe that Ned turned a year old this week?  I have spent much time reflecting on his life and our journey this week.  While I often find myself frustrated with not being able to resolve Ned's GI issues, I am amazed at how far he has come.  I have read back over this blog around the time of his birth and in some ways, I vividly remember that life and being that person and in other ways, it seems like I'm reading about someone else's life?  Ned's life has not only deeped our faith he has strenghtened our character.  We have endured a process that has taught us patience and we have learned that joy is completely independent of of your situation at any given moment....the absence of hardships doesn't guarantee joy, nor does the presence of hardships squelch it.  Every day, I look at my family and my children and my heart is completely overwhelmed at the life God has granted to me.

I think often of how precious life is.  In the past year, I have gained a better understanding of what it is to receive eternal life and the life more abundant.  I used to believe those terms had different references, but now I understand that our eternal life starts NOW...it is the life more abundant.  For some reason, I used to related eternal life to the life in heaven after you die, but I now believe that Jesus meant for us to have that life beginning now.  It has been difficult for me to hang on to that life in the past year specifically since we brought Ned home from the hospital.  Once his medical care was completely my responsiblity, I had a hard time not attempting to control every detail and micro-managing his care.  It is a real effort for me to continually place his care and the feet of my Lord and allow him to completely restore Ned's body.  Until I read back the past week, I had practically forgotten that "complete restoration" was my original prayer.  I had come to a place of trusting God with the details and the timeframe, but continually praying for and believing in, complete restoration.  I am working myself back to that place of surrender with God.  Although Ned was a much sicker baby at that time, I lived in greater peace.

I don't have any birthday pictures as of yet.  My parents are out of town this week and since the grand parents are the only people invited to the party (to prevent germ exposure), we're delaying the party till they return.  Ned has no idea it is his birthday, nor does he eat cake, so we don't feel like there's any harm in delaying.

I'm not sure if I have mentioned it yet, but Ned is saying "mama" all the time now (Meanwhile, Jack, age 3, has started calling me Mom...like he's 15?)!!!  We can't get him to say anything else, but he has gotten some teeth so maybe that will help with his speech.  I though he would never get teeth, but a couple of weeks ago, he had four come in within a 3-day span of time.  It wasn't Ned's most pleasant week, but he looks so much older all the sudden.  He started to get the two outside upper teeth first and I was so afraid he was going to look like a vampire, but the center two popped right in there....thank goodness!  His pediatrician told me not to worry about the teeth being out of order, apparently Ned "didn't get the manual".  I assured Dr. Cerjan that Ned apparently missed manual distribution day, because he hasn't followed one protocol yet!

Other than the lingering GI issue, life is good and I'll post with some birthday party pictures once we have the little shin-dig!  Much love and many blessings!

Travis, Betsy, Jack and Ned

So Sorry!!

I can't say I know how time has gotten away from me so over the past several months other than to say we have been on a rollercoaster with Ned's feeds.  It has consumed our lives to say the least.  He still really isn't tolerating his feeds that well, but after a failed surgical procedure in Charlotte, we have taken him back to Chapel Hill where we feel like we'll eventually get to the bottom of it.  He is currently down 2lbs. and just can't take very much volume at a time at all.  He is refluxing and having bile in his tummy again.  Everyone is certainly perplexed about what is going on with him,  but I am hoping for some resolve in the near future.  He is a completely different child when he is feeling well.  I hate to see how he struggles and seems to be in pain during every feed.  It is such a dread for me to have to start his feeds and he cries from the beginning like he knows it is going to be painful.  Please pray that the Lord will grant Ned some rest and will heal whatever it is in his little GI tract that is so whacked out at the moment.  

When he isn't eating, Ned is very affectionate now and laughs and smiles all the time.  All his seriousness has somewhat disappeared.  I'm going to post some recent pictures of him and Jack and I'll update after Christmas.  I hope everyone has a very Merry Christmas and very blessed New Year!  You have all played a very important role in our 2008 and I am thankful for your continued prayers and support.

Much love and many blessings,

Travis, Betsy, Jack & Ned

Surprise, Surprise!!

I know everyone is astonished...I'm quite shocked myself!! Ned has had an eventful week, so I really had to share. We'll cover the good news first:

Ned has made major strides in his physical therapy this week. He is rolling onto his stomach (assisted), and tolerating it very well. He's even moving his little legs like he want to go somewhere. He is also holding his weight on his hands and knees. I suppose he'll be wanting to start crawling soon, I'm just not sure how we're going to manage that since he's connected to feed and oxygen all the time. That will be a little project for me. Ned has also been sitting up all by his self this week. He doesn't sit very long, but his endurance and strength is definitely improving. I've been so proud!

On the downside, we're back to gagging and yacking up spit again...not tolerating feeds. I'm starting to think it is another stomach ulcer? The doctor called in some medicine for it yesterday so I guess we'll just see how it works? Please pray about it. I'm so hoping he can continue to tolerate and stop the spitting up so we don't have to change is feeding tube to the one that keeps him on continuous feeds....that may really slow him down as far as mobility.

Travis and I have been asked to be a part of the radio-thon in November to help raise money for the UNC Children's Hospital. I am so excited to be able to share with people and raise awareness for CDH, as well as, praise the doctors and staff there who were so wonderful with healing Ned and in their treatment of him.

Please keep the three CDH babies currently in the hospital in your prayers (links to their websites are above): Nayeli in San Fransico, Carter at Duke and Lizzy Jo at UNC.

I hope to post some Halloween pictures of Jack and Ned, but it all depends on Ned's mood this afternoon.....it hasn't been all that pleasant this week.

Much Love and Many Blessings
Travis, Betsy, Jack and Ned

Just Can't Get Into the Swing of This

I'm sure nobody will believe this, but I have the best of intentions of posting on this blog everyday, but, somehow, it just isn't making its way into the routine very well.  I'm gonna keep trying though...so bear with me.

So, what we finally determined was ailing Ned several weeks ago was pleuricy and a stomach ulcer.  By the time we caught both he was on the mend and has been doing much better.  No more screaming his head off night and day...it has made life much more peaceful!  Just in the past several days, he has started that y

acking again and I'm starting to think that was more related to the stomach ulcer and possibly, he has another one.  His white blood count and platlet count has risen quite high again...I'm hoping to talk with his GI docotor tomorrow to see if this could all be related and hopefully find a cause for the recurring problem.

Ned is growing though...currently weighing in around 18lbs...he's quite the heafty one.  He is starting to sit up better, rolls to both side and endures tummy time a bit better.  He is mostly interested in standing though.....I told him it was okay if he skipping the crawling, but it was essential that he learned to sit on his own.  He's not seeing my point of view at the moment so we're facing off over that one.  He is also completely obsessed with his tongue and sticks it out when he grins (I would love to post a picture, but the camera light is way to distracting for him to ever maintain the smile during a photo).

Other than that, things have been pretty "routine" around here, although that isn't a word I would use to describe our household at all anymore. Tonight, Jack stuck the head of a miniature spiderman up his nose...it got stuck.  It put him in a little panic in the bath when he had to tell me it was up there...we eventually blew it out...really gross stuff!  As you can see, we're currently in the "super hero" phase.....

Please pray for baby Nayeli and Carter.  They were both born recently and are working their way through recovery.  Also there was a mom being induced at Chapel Hill today (no website)...her little name is Lizzy Jo, how cute!  I'll update everyone on her condition as soon as I hear something.  These families are facing a very tough battle, they need your constant prayers because they need the presence and foundation of their savior.  

Anyone want to take bets on how long it will take me to post again?  I'm gonna aim for Friday?!

What a Rollercoaster....

I knew when we were in the intensive care units that they expected Ned's healing process to be like a rollercoaster....lots of ups and downs. Somehow, I feel like the ride has gotten much more bumy since we have gotten home. Not that his condition is in any respect as critical as it once was, but Ned is having a hard time maintaining a "well" status.

For the past month he has been battling several respiratory respiratory viruses which have finally developed into a pneumonia. I think he is past the worst of it...he just continues to struggle with a nasty cough, low-grade fever and lots of extra secretions which he isn't that capable of handling well. I'll be so glad when he isn't yacking and gagging up stuff out of his lungs. He's quite a pitiful site during those little episodes.

Other than that, we met with another feeding therapists while in the hospital last week. After working with him and looking at the results of his latest swallow study, she thinks he is very teachable as far as eating goes. That was very encouraging news to us, so I'll start working with him closely until the feeding therapist in our area returns from maternity leave. I would like to hurry things along, but I think it is important that we work with a therapist who is similar to those he has worked well with in the past.

It's just such a new kind of life with everything up in the air all the time, but I am continually reminded about how blessed we have been to be able to keep Ned here with us. It is so difficult to know all these other children who are coming into the world who aren't meant to stay here. It always puts my problems and Ned's medical issues back in perspective. Please continue to pray for these precious children and their families.

Hopefully, I'll get some simblance of a routine again soon so I can begin updating regularly again. I'll also try to take some updated pictures of the kids.

Much love and blessings to you all!
Travis, Betsy, Jack and Ned

Minor Set Back

Well, we returned home Friday afternoon from another week-long hospital stay. Apparently my affection isn't enough for Ned....he seems to want to continue to return to that hospital environment he learned to love so well where all the nurses are constantly fawning over him. I'm not quite as entertained by these little "field trips", but at the moment it looks like we've crossed another little hurdle....yoohoo!

Ned's diagnosis from his hospital stay is still a bit of a mystery. We originally took him into the ER because his respiratory rate and heart rate were pretty elevated and his breathing looked labored. By the time we got into the hospital, his O2 sats were dwindling, so I'm thankful we took him when we did. God's direciton overruled my natual tendancy to believe things will pretty much work themselves out and to avoid hospitals at all costs......good thing! That was about the extent of his symptoms? He did have a slight (99) fever at the hospital that night, but never again. His white count was way up there at 30,000 where it has pretty much remained even after a full course of IV antibiotics so they've pretty much ruled out infection. At one point last week, they was some talk of leukemia, but they ran some extra labs on Thursday that ruled that out. When it was first mentioned, I started thinking "surely he won't have leukemia....I just don't think I can take that kind of stress right now." But God reminded me that His power and provision is endless and He has provided so well for us so far, why wouldn't I trust Him now? Still....very thankful the tests came back negative.

So, other than still requiring a tiny bit of oxygen and his white count staying up there, Ned seems great. The best news is that yesterday at the doctor, Ned finally made it onto the bottom of the growth curve!!!! We have been trying to get back on the normal curve since April!! He weighs a whopping 14lbs. 10oz. He looks so much better with each pound he packs on. We're still not eating by mouth and our constant return trips to the hospital are really putting a kink in the feeding therapy sessions. If all goes well, we should begin next week!

Ned has started to laugh and smile much more and is quite the tickleish little fellow. He and Jack are so precious together, I can't hardly stand it. Things are moving right along and we're working on some developmental skills like sitting up and grabbing toes....major goals and objectives. I so appreciate everyone keeping up with Ned and continuing to pray for his progress.

Please continue to pray for April and Russell VanDyke. They are still coping and working their way through the loss of their son, Seth. If you want to take a look at the little cutie....here's the link: http://www.youtube.com/watch?v=TbraxnhvEeI

Love and Blessings to you all,

Betsy, Travis, Jack & Ned