A Tribute to Seth

This morning around 1:15am, Seth Vandyke was called home to the arms of our Lord. It is with such deep sadness and regret that I relay this to you all. My heart is broken for a precious family who has watched their son fight the hard fight with CDH. I know, without question, that God chose his parents, Russell and April, for this very special child because He knew that Seth would need extraordinary parents to see him through his short, yet highly purposeful existance. I thought today how much I will enjoy seeing Seth when I get to heaven. I have no doubt that he will have more to share about how Jesus worked in him and through him in his three week lifespan.....he'll be able to hang right in there with the story telling of all the old saints. I know God has been holding Seth and guiding him every step of the way until he led him home to a place of peace, comfort and joy.

Please keep April, Russell and Seth's brother Nash in your prayers. They are walking through a very deep valley where most of us only every tread in our worst nightmares. But they will also experience a peace that most of us will never have the priviledge of feeling. I know God is smiling down on this family with such pride for their never-ending faith and enduring dependence on the their Father. I am praying that even during this time, they will feel the hand of God in their lives and know, beyond a shadow of a doubt, that this was His very best plan...maybe without fully understanding, but with complete trust.

Tonight, I will put my little CDH babe in the bath. I will wash his little body and inspect his little scars. I will again be so poiniently reminded that his life is more than a blessing....it was a miracle handed to ME? Everytime I think of April, I will be reminded of what a gift I have received and what a responsibility I have in being a good steward of the children God has placed in my care. I hope that the light and life I see in Ned will always be a constant reminder to me that God entrusted me with a life full of purpose and that will inspire me to raise him in a way where he can fulfill his potential.

Please continue to pray for Russell, April, and Seth. They need to feeling the healing power of prayer and scripture at this time.

Thank you....love you all so much!

Betsy, Travis, Jack and Ned

Jigity Jog.....

Home Again, Home Again.....We are so very thankful! I will have to say that this hospital stay was the most taxing on me personally. I know that sounds completely insane since Ned was completely stable and the surgery wasn't the life or death type, but he had to endure so much pain and discomfort this time and watching it for 6 entire days straight just about sent me to the psych ward! We have just been really spoiled being in the intensive care units where modifications to care are made immediately when there are any signs of intolerance. Following the issues with the narcotics, we went through a whole other ordeal attempting to get him on a feeding schedule that his little tummy could adjust to. On the weekends with few people around, such change takes an act of congress. He cried more in the past week than he has ever cried in his entire life combined. I may be the only mother in the world who would prefer that her son be in an intensive care if he is going to be hospitalized at all?

Enough of that....we're home and he is doing great. As of today, Ned is back up on full feeds, but is still being fed continuously. Our goal is to increase the calorie concentration of his feeds (he has lost about a pound and a half over the past week and needs some serious fattening up) and then transition him to bolus feeds (which is how normal people eat....large volumes over short time periods about every three hours). It may take us a while because we don't want to push him at all and risk compromising the nissen again? As you can see from the picture above, Ned is elated to be back home. In fact, he cried until we exited the hospital and then he settled down quite a bit....like he knew! The only issue we are having with him at the moment is that he has developed a severe "mommy complex" and I can hardly leave the room without him crying. I'm hoping when we go on vacation, he'll be around Travis all day for a while and loose a little of his obsession for me.....not all of it...just a little bit.

I just wanted to update everyone and let you know how great everything went. I know I have said this a gazillion times, but I have the most compassionate surgeon in the world. In fact, he came by the hospital on Saturday just to check on Ned.....he is a precious man! I just thank God that He placed him in our path and used him in saving Ned's life.

Please continue to pray diligently for Baby Seth. I believe God will respond as His people pray. Seth is on a difficult road, but there is no path or place from which God cannot redeam and restore us....just ask anyone who has been spared by the transforming grace of Christ!

Much love to you all!
Betsy, Travis, Jack & ned

Sweet Relief

Rest finally came to little Ned last night around 10pm. It was an extremely long up hill battle yesterday trying to get his pain under control. The problem stemmed from the fact that his narcotic tolerance is extremely high due to living in a drug enduced state for months on end and that they can't start IV drips on the floor on children as young as Ned....that needs to be done in an intensive care unit. The NICU isn't supposed to bring children back into their unit after discharge....it's part of the way they control germs and infection and the PICU is always really slammed full with extremely sick children. Ned really isn't nearly sick enough to be in the PICU, but his pain was starting to cause him some real respiratory problems which I feared may send him back to the PICU for good cause?

Yesterday afternoon, he started to have some real signs of respiratory distress. He was needing more and more oxygen support and his O2 stats were slowly, but steadily decreasing. I called in my nurse and asked her to page surgery. Our surgeon was in the OR and the responding surgeon began trying different doages of the morphine and fentynal.....nothing. He continually kicked and screamed to the top of his lungs. This had gone on since 4:00 on Wednesday afternoon and he was so exhausted and in so much pain that he was too tired to breath and he was guarding his abdomen and only taking really shallow, really labored breaths. He looked terrible. Dr. Adamson got out of surgery and came by....agreed that Ned seemed to be in a bad way and suggested that we try him on one more medication (a muscle relaxer, not a narcotic) to see if that had any effect. If not, he said we would do whatever we needed to do to get him on some higher doses of pain meds. Once we started the muscle relaxer, Ned we completely to sleep for about 10 minutes, immediately woke up screaming. I paged the on-call surgery resident twice, when he didn't come immediately, my nurse paged Dr. Adamson at home. He called down to the PICU and the attending fellow said she would handle Ned's pain management without moving him to the unit.....yeah!!!!

When Bridget walked in our room last night, I have never been so thankful to see a human-being in my life! I felt like, "Thank you Lord"...here was somebody who knew my son and understood his addiction and tolerance levels. I told Bridget that I was so thankful that somebody who believed in drugs was finally here! It took an unbelievable amount of drugs to get him to sleep. After she gave him his first round of ativan and fentynal, she came back to see how he was doing...Ned just looked at her like "what else do you have?". They finally put him back on a Fentynal drip and he went to sleep around 10pm. He has been out like a light ever since. I know the child has to be completely wiped out. He is back down to .2 on his oxygen where he had gotten back up to 1.5 liters. I feel sure he'll come back off completely once he comes out of this little comatose state he is currently in.

Thank you all for all your prayers, they were much needed and felt over the past two days. I think we're over the hump and should start working on the feedings soon and try to make our way back home in the next couple days!

I just got back from visiting Russel and April, Baby Seth's parents. Seth is still stable on ECMO. The surgery team is re-positioning his ECMO cannulas this morning as they had shifted just a bit. Please pray, pray, pray for him and his family. Please ask God to work a miraculous healing in his little body like only He can do.

Much love to you all!
Betsy, Travis, Jack & Ned

Lucky Number 7?!

Well, we have gotten past what I truely expect to be our final surgery. We still don't have a good idea about what caused the first nissen to fail, but this one went off without a hitch. Dr. Adamson secured the stitches with (I think he said polyester) material to help scar tissue grow and more strongly secure the wrap? For some reason polyester doesn't seem like a surgical material to me...maybe I am remembering it incorrectly? They tested the nissen to ensure that a feeding tube would pass through the now narrowed opening. It went through easily where there was some obstruction last time. Maybe that had to do with the problem, only time will tell. Please pray that this procedure will hold up so Ned can begin to learn to eat like normal....that would be amazing!

In the meantime, Ned needs prayers for relief from pain. He has built up such a narcotic tolerance, that they can't seems to get him comfortable following the surgery. Now that he's out of the ICU's, they can't put him on any kind of a narctoic IV drip and the one time doses of drugs just aren't touching his pain. He has been extremely worked up all night and really hasn't rested much at all since his surgery. Please pray that his pain will subside so that the amount of medicine he is allowed to receive will sufficiently allow him some rest.

Please check out Baby Seth's link and continually pray for him and his family. He was born yesterday (delivery was scheduled for tomorrow) and he is having a difficult go of it so far. The surgeons put him on ECMO yesterday afternoon just hours after his birth. His parents are holding up beautifully so far....what a testiment to the sustaining grace of our Christ! Seth showed some signs of improvement this morning....baby steps, but progress all the same! Just please pray that his body will get the rest it needs for his lungs to begin to function better!

I'll post more when Ned is resting better. Right now, I'm cramming between scream sessions....love to you all!

Betsy, Travis, Jack & Ned

Many Needed Prayers

Just to clarify the heading, Ned is doing fine. He is still refluxing pretty severely; however, we have been able to manage it somewhat with the use of probiotics and continuous feeds. We're simply waiting for the 25th to repair the nissen procedure. I am really hoping that once that is complete, he will begin to make some progress on feeding by mouth. I have tried him several times on spoon feeds, but it seems to get to a certain place in his throat and up it comes. I am very encouraged that he is willing to try. I so hope he'll begin to eat a little soon! Even if we're still supplementing him through the g-tube at night, I sure would like to get back to work at some point. I really miss working....just getting showered and out of the house, living in somewhat of a routine and interacting with other adults during the day. I know this is just a season so I'm trying to focus on finding my way where I am and learning to praise God for the place in which He has me. One day, when Ned is going off to college or getting married, I'll look back on this time I have with him and be grateful. Although it isn't what I would choose right now, I certainly don't want to squander it as if it isn't a valuable experience.

On to the prayer request....other than surgery and eating prayers for Ned, there are several other families who are really walking through the fire right now. I'm not sure how many of you have kept up with Baby Skyla's blog. Skyla had the same two major defects as Ned and has struggled with complications from the repairs since her birth last October. I am deeply saddened today as Skyla has lost her fight. My heart is so burdened for her mother. I truely believe that God allowed Skyla to return to Him as she had served her purpose on this earth and He wanted to shelter her from any further suffering. Having said that, I don't know that it will give her mother any peace or comfort at this moment. She has been completely devoted to Skyla and has been her strongest supporter, ally and cheer section. Please pray for her family and specifically her mother, Kristy. I would love to say that I can't imagine what they are going through, but the truth is that I have imagined it in my head many more times than I care to recall. I can't begin to know the surreal reality that is consuming them, but I believe that they must be feeling completely crushed by the realization of all their fears and now facing a sense of loss like none other.

Also, please keep in mind that one day this week may be the day that Baby Seth makes his debut. Please pray that the Lord will lay his protecting hand upon little Seth at this very moment, that He will ordain Seth's birth and use the miraculous healing of Seth's body to speak into the hearts of others. Please keep his parents, April & Russell, in your prayers throughout the week. The unknown, when it relates to your children, is a very dark place to be. I am praying that they will feel the Lord guiding them and holding them granting peace throughout Seth's healing. They are both such beautiful people, I look forward to seeing what a precious child the Lord gives to two such people.

That's all for tonight. I believe in this prayer group and God's faithfulness to respond to your requests. I attribute Ned's life to each and every little prayer that was lifted up in his name. There is much power here and I'm hoping it can now be used to bless others.

Much love to you all!
Betsy, Travis, Jack & Ned

Way Past Due

I realize that it has been forever and a day since I have updated the blog. The only reason I haven't kept it up very well is that we haven't installed high-speed internet access at our house yet and my verizon card is slower than dial-up. I think we'll be online in the next couple days; however, I have received several emails questioning Ned's progress. This may be short since my patience can't withstand this slow pace, but once we have our computer set up, I'll keep this blog up much more regularly again.

First, for the good news! Ned is growing by leaps and bounds. He weighed 8lbs. 12oz. when we left the hospital on 04/15 and today he weighed in at 11lbs. 8oz. He is getting quite chunky and it's completely cute. We have been meeting with an army of specialists since we got home and so far, they are all amazed at his progress considering his medical history. Everyone that enters our home or meets with us calls him a complete miracle and I agree knowing they have no idea how true their statements are. His developmental progress hasn't been terribly dealyed, amazingly, and we hope to have him back on track in about a month. I'm sure he isn't loving me because I'm like a drill sergeant!

Ned still isn't taking anything by mouth, and at the moment it appears that it will be at least a month before we can even begin to make any progress. His nissen procedure has failed....confirmed today with an upper GI test back in Chapel Hill. They are planning to repair it on the 25th of this month; however, he probably won't work on feeding by mouth very much until that is fixed. With all that in mind and knowing that teeth are soon to make their grand debut, I have decided to hang up on the nursing. It was a difficult decision for me, but my time is getting extremely strained with keeping up his feeding and supplies, along with pumping supplies, house cleaning, Jack and work. Something has to give and that seems like the most logical responsibility to relinquish especially considering that I have a stock pile which will get hime through a couple more months anyway.

This surgery at the end of the month will be Ned's seventh surgical procedure. While this sounds overwhelming at first, I am looking at it as God's perfect completion. In the Bible, the number seven signifies His completetion and, often times, rest (as in the Sabbath). In many circumstances, the seventh means "finished" and many verses surrounding the sevenths say "It is done". His promises and the truth in His living word have carried us though this and will see us through.

I apologize for the delay and I'll keep up better in the future....and I'll post pictures when the connection is faster. Thank you all for the continued love and prayers that have been poured out on our family.

In His love,
Betsy, Travis, Jack & Ned

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!