"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)

Sunday, May 18, 2008

We have been home for several days and are finally starting to get settled in! Thursday and Friday were pretty hectic just trying to get Ned in a routine and get our hands around all his care. He has settled in wonderfully, we really couldn't have asked for a better transition. Our biggest hurdle has been trying to get everything moved in and cleaned up in our house. We've also run into a coule of glitches with things not functioning properly while trying to get cable and phones and such as that installed over the weeknd. As of tonight, I feel safe saying "I think we have made it over the hump"!

Our most difficult part of bringing Ned home was the actual ride from Chapel Hill. We think he may have been a little car sick. I'm hoping he'll do better on the trip to his pediatrician tomorrow? Otherwise, he spent a couple of days looking around a bit bewildered but has now settled down and is acting like his old self. With one exception....he is trying to nurse a little bit. He still isn't taking any volume to speak of, but he is attempting to suck and swollow without gagging. For him, it is a huge improvement!

We've been so busy that I have hardly had time to reflect on how God brought us to this end. All I can think of in my head is that we have finally arrived to the only place I have wanted to be since last August...at my own home with Travis and my two boys. Above is a picture of Ned at home.....he looks like he's posing for the SI swimsuit additon with his hand cocked behind his head!

I just found my computer tonight so I'm going to sign off for now. I'll give better updates tomorrow!

Wednesday, May 14, 2008

Last Night in Chapel Hill

I joined Betsy in Chapel Hill tonight to find our little man sleeping soundly after his mom gave him a bath. In order to ride home with Betsy and Ned tomorrow, I needed to catch a ride up here and as you know, it's not a short trip. My good friend at work, Mark, graciously volunteered his time after a hard day's work to drive me up here then back to Gaston County. It's people like that and many others that God has placed in our path that has made this journey bearable. Tonight at dinner, we thanked God for the journey He has put us on, and of course for the miraculous healings He has dealt little Ned.

It is bitter sweet tonight, as the day we have been waiting on since August of 2007 is finally here. Tomorrow, we will bring Ned home healthy and intact. We know the road ahead is not going to be the easiest, but our Savior has shown His healing might, and we will continue to trust in Him during the years to come, with both our children and Margaretta. While we are so excited to get home, it is still hard leaving the many nurses and doctors that have been Betsy's friends and family while I was home working. These people mean so much to us, and we are taking every opportunity we can to tell them this. While I'm bloggiing, B is writing notes to many of these special people. I'm sure tomorrow will be a tear filled farewell also. It seems it won't be for long though, b/c we already have a follow up appointment scheduled for June, so that reunion will be special I'm sure.

Well, we've got a big day tomorrow, and with Ned passing all his "go-home" tests, and Betsy passing all her "go-home" tests as well, with flying colors I might add, it looks like we'll be ready to roll tomorrow some time. We owe our good friend Kelly and Moose a debt of gratitude as well, as they have allowed B to live in their apartment since they've gone home to Cville, and for this we are very grateful.

Thank you all again for the visits, cards, Sun-drops, and especially the prayers along the way. Please continue to lift my family up, and please let us know if there is anything we can do for any of you.

Love and God Bless,

Travis, Betsy, Jack & Ned

Tuesday, May 13, 2008

The Date Has Been Set!

We're going home on Thursday!! I can't believe it..... just seems like a dream! I'm a little afraid to completely get my hopes up, but it looks like a go. I had to say goodbye to some of my nurses today and I had a difficult time letting them go and knowing that they had to let my son go. They have invested a lot of time and energy into Ned's survival and progress. They have become my friends and the only family Ned has really known. As much as I am ready to get back home and to our normal life, the people I have met here will be dearly missed.

Most of our days are now being spent getting prepared for home. I have trained on the feeding pump that we'll be taking home. Ned began bolus feedings today and seems to be tolerating it rather well. The feeding change is a big adjustment for his belly, but he looks like he's going to make his peace with it. Ned passed his carseat test with flying colors. What that basically means is that he sat in his carseat for 3 hours without any problems....he actually slept through the whole thing. I can only hope he does the same for the road trip on Thursday!

The doctors have been so good to get everything set up for us at home. They have tracked down a pediatrician, and all my specialists in Charlotte. I will return to Chapel Hill for follow-ups with our surgery team, but everything else will be handled out of CMC. Ned's general surgeon told me yesterday that he and the heart surgeon were high-fiving in the hallways about how well Ned has done and how he's going home. That melts my heart that they are so excited about Ned...such truly beautiful people.

As an aside, baby Charlie has made it through his CDH repair this afternoon. His hernia didn't end up being that severe and they were able to close the whole without the use of a patch. They are planning on peforming his first of several surgeries to repair his heart defect on Friday. Please keep Charlie and his family in your prayers. They are still struggling to get their minds around everything and they have a long road to hoe.

I want to thank you all again for all your prayers and encouragement over the past 4 months and even prior to that. I know everyone will want to see Ned and I so wish we could have a big coming home party, but until we meet with some of his specialists, we're not sure how they are going to want us to handle germ control. I'll keep everyone posted on what they think his immune system and lungs can handle and as soon as we can have company, I'll let everyone know. Until then, I'll keep the blog updated so everyone can continue to track Ned's progress. I know you all have a lot of time and emotions invested in our little man as well. Love you all and can't wait to see you soon!

Much love and many blessings,
Betsy, Travis, Jack & Ned

Sunday, May 11, 2008

The past couple days have been a bit slow and a little surreal and nostalgic for me. Ned continues to do well. We are working on getting him back up to full feeds which we should reach that goal by tomorrow afternoon. The home health equipment company will be delivering the feeding pump we will take home on Tuesday and we'll be trained on how to use that specific piece of equipment. I'm not sure if we'll leave here on Tuesday or Wednesday, but they are projecting one day or the other! They also hope to get Ned on bolus feeds pretty quickly which means that we'll pump him full of food over like 30 minutes then he'll have 2.5 hours where he is completely wireless!! At the moment, the only cord which remains is the feeding tube so he feels so free to me, it's amazing! When I went to pick up my friends new little girl the other day I felt so awkward because I wasn't sure what to do with my free hand that didn't need to be managing cords while lifting....I felt so incapable of holding a normal baby....I think I'll get used to it though.

I'm sure some of you remember that I mentioned meeting a girl named Kelly who was pregnant with a little boy, Charlie, who had been diagnosed prenatally with CDH and a heart condition. Charlie was born last Friday and has done pretty well over the weekend. They hope to perform his CDH repair on Tuesday if things continue to go well. Please keep him and his family in your prayers. Kelly is having a really difficult time at the moment and hasn't slept in 4 days.

Happy mothers' day to everyone...I'm going to celebrate mothers' day later this week when we're all together....FINALLY. Who can believe that this time next week I'll be home with both my boys? I love you all!

Betsy, Travis, Jack & Ned

PS- If anyone is looking for a night of good clean fun....please purchase and play "Cranium"....I have laughted my head off playing tonight!

Wednesday, May 7, 2008

The Pain After A Successful Surgery

Betsy and I arrived to the hospitol around 9am this morning to hang out with Ned a little while before they were to take him down to the OR. Dr. Adamson came in about 930 and said they were several hours behind schedule and that it would be around noon. Our nurse finally carted him down to the OR around 11:30. We went down to the cafeteria to get some lunch around 1:00pm, where we saw our surgeon eating lunch. Betsy asked him "What are you doing here", and he advised us they were just getting the anesthesia going and that they couldn't start without him. We later learned that he told our nurse that we "busted" him eating lunch. I don't know what we would do if God hadn't blessed us with such a wonderful surgeon. It has been such a relief to have such a wity, kind-hearted, and talented doctor in charge of all of Ned's surgerys. Anyway, the surgery was a success, and Dr. Adamson was pleased that he was able to get enough stomach twisted and turned to insert the G-tube along with performing the nissan procedure. This was our best case scenario going in, and there was a back up plan, but thankfully we didn't have to go to that.

We joined Ned back in his room around 500p and started a 5-hour process of trying to get him relaxed. In all Ned's past surgeries, he has come back to the NICU with breathing support of some kind, and they were able to have him on some pretty heavy doses of narcotics to alleviate most of the pain. Today, however, he came back to the NICU with no breathing support because he's been off of it for some time now, so they can't give him as much pain medication after this procedure. Kids that young tend to "forget" to breathe sometimes when they are that sedated. Ned was in what looked to be excruciating pain, and that is a very hard thing to watch. We were so helpless. The best we could do was just hold him, and pray to our God to alleviate that pain, which we have done, for hours. Finally, about 10pm, we thought he was settled down enough for us to run downstairs and grab a bite to eat. We sat there and talked about plans to stay the night rocking him, but as we returned to the NICU, our nurse informed us that he was sleeping, and seemed pretty calm at the moment. She assured us that she would call to wake us if she needed the reinforcements to come back tonight to try and soothe him the best we possibly can. Prayerfully, our good Lord will continue to comfort our child during the night.

The upcoming days seem to be ones of education as we will learn how to take care of Ned's G-tube and start to feed him with it. This is a very exciting time for us, as the doctors and nurses talk more and more of "going home". When they first mentioned us going home yesterday, it was the most incredible feeling, and along with it, came somewhat of a panic. I am going to go home tomorrow, and try to make sure at least the inside of our house is truly going to be liveable. I imagine I could just get the master bedroom in working order and be pretty safe, b/c all Betsy has talked about has been how she can't wait to pile up with Jack and Ned in the bed and just "be".

Another side note is that tonight should be our last night in the 'ol Ronald McDonald House. Our friends Kelly and Franklin will be heading home to C-ville with their new bundle of joy, Emily, for the summer and Betsy is going to stay at their apartment for the next few days, until we are discharged and take Ned home, which the doctors are still tentatively planning for the beginning of next week.

Please continue to join us in prayer, that Ned's following his G-tube surgery will be alleviated, and that we will be able to come home with him next week. What a miraculous journey this has been, and what blessings God has bestowed upon us! Thank you all for all you've done.

In Christ's love,
Travis, Betsy, Jack and Ned

Tuesday, May 6, 2008

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