He'll be Home for Christmas

Well, I've been crying buckets this evening as I praise God for His goodness in the progress we have seen in Devon,becuase i got the word today that

Devon is going home tomorrow!!

His surgery was such a success and he is up to full feeds in his little tummy and they are releasing him tomorrow morning at 9am. Ashley and Ron are of course exstatic and keep singing, "Tomorrow, Tomorrow!" from Annie and say they would leave right now if they could.

This has been a long road our little man has been on, and the journey continues. But the fact that,5 months and two days after he was born, Devon can finally go home with his Mommy and Daddy is such an exciting milestone that I don't know what else to say but Praise God and THANK YOU to our heavenly Father and all of you who prayed for Devon, Ashey, Ron, and all of our family. It was all I could do not to get in the car and drive down today, but I can't for various reasons and I know the Lord will work out just the right time for me to go down. He hasn't shown us anything but goodness so far, and I turst that will continue.

Ashley and Ron are heading home tomorrow in some pretty ugly weather, so we would appreciate prayers for safety. I can't believe my nephew will be home for Christmas; what an incredible blessing. I found this really cute slideshow and while it's a bit slow, it's neat to see the pictures this way, so i hope you enjoy the photos from our Thanksgiving Weekend.

Give Thanks to the Lord, for He is good! His love endures forever! -Psalm 118:1

Devon's surgery a success

For anyone reading this blog but not my other blog, please click on "Armchair Housewife' on the right to read the most recent two posts about Devon's surgery. I haen't had time to post here, but I do intend to do so soon, with new pictures included. Thanks!

Growing Boy

I just spoke with your mom today, and there's lots of good news to share with everyone who is checking in on your progress. First of all, I got to visit with you a couple of weekends ago down in Philadelphia, and here are the pictures from that wonderful day.

When I saw you, you were in a room with a window instead of the NICU, and there was just you and one other little baby in your room. There was a couch/bed next to your crib where your mom could sit and be with you, and that's where she spends most of her waking hours these days. Your mom loves you so much, Devon, and she is with you all the time. Your dad is there a lot, too, when he isn't back home working to help take care of you.

You seem to like your aunt Nikki. Or, at the very least, you didn't cry or fuss too much when I held you. And this time, we got to stay long enough that I got to hold you, and sing to you, and you even slept in my arms. Now that was a little slice of heaven for your Aunt Nikki.

So, on to the good news! First of all, you no longer have your cannula in your nose, which is a very good sign that the doctors think that your breathing is getting stronger. The doctors are also taking you off your feeds for four hours a day, two periods of two hours, and this means your mom gets to take you out of the room and take you on walks around the hospital. This is very exciting news indeed! when I was there, i got to see her put you in a stroller for the first time, and be able to walk around the room with you in her arms. How exciting! Also, now that you are off the cannula, it will be even easier for her to take you around, because she won't have to worry about having to take the tank with you wherever you go.

You're continuing to grow strong, nearing 9 lbs now. Your mom and dad heard from the surgeon just today, and they are thinking in just three weeks that they will be able to retry the surgery you need to fix your stomach and stop the acid reflux episodes from happening. This is of course very important because until you can take food into your tummy, you won't be able to go home with your mom and dad. And do they EVER want you to come home with them!

Your mom and grandma went shopping for some goodies for you today: some new clothes because you are growing, a new carrier, and a few toys. I will get to see you again before too long, when I come down to visit for Thanksgiving. I can't wait!

And, one more very exciting piece of news, Devon. You have a little brother or sister on the way! Your mom and dad are excited (and I am too!) that there will be another little Newman to love, and it looks like he or she will be born just one month shy of a year after you were born. Your mom and dad (and grandparents!) are going to have their hands full, but your Aunt Nikki just thinks the Lord wants her to have lots of nieces and nephews to love on and spoil.

You are so loved.

Your Aunt Nikki

Ibuteral Worked

Hi friends,

I spoke with my sister this morning and she informed me that the Ibuteral is working and the fluid has left Devon's lungs. This means they can take him off the medication now.

Good news indeed. Also, still no major acid reflux attacks in the past couple of weeks, praise you Jesus! The intestines are still going strong and now they're just waiting for him to grow some more. I spoke with my Aunt Sue who visited just yesterday and she said that the room he is in now has a window and he loved to look out it, that he's so alert and responsive. She also said that they told Ashley that next week they will start "unplugging" him for short periods of time so that she and Ron can walk around with him, even take him outside for a bit, which I know will be a very exciting time for Ashley and Ron.

Days until I get to see my little man again: 13!!

Growing Pains

Hey little man, you Aunt Nikki is really in full-gear missing you mode. I was so blessed to be able t be a part of the benefit that raised money for you and your parents this past weekend, but it made me miss you all the more. I can't wait until I get to see you on November 2nd. I'll be on a cruise to Bermuda the week before, and I can't imagine anything that would make getting off the boat sweeter than knowing I get to drive to see you right after. I can't wait to give you a big kiss.

I talked with you mom yesterday and you're doing very well in that you are growing, you are nearly 8 lbs now! In fact, you grew nearly a whole pound just in the 6 days your mommy was away for the benefit (which, by the way, I can tell you that was very hard on your mom. She went home because she had to be there for that benefit but she cried every day for missing her little boy)! You are such a fighter, little Devon man.

And it's a testament to God's goodness and hand on your life that you are growing so quickly, becuse that is precisely what you need to do right now, little man. The doctors say that they want to try to do surgery again to stop your acid reflux problem, but they can't do it until you grow some more. Your liver is still too big compared to your other organs, so you need to grow into it, and your lungs needs to get stronger and better developed, too. This acid reflux has been very hard on you, buddy, it's painful and it's dangerous because it's slowly eating away at your esophogus, which is not a good thing. So we're all praying for you that you will grow grow grow in the next six weeks, when they will reevaluate you and see if you're ready for surgery.

Your Grandma Laurie is down visiting you today and I know she is beside herself happy to get to put her arms around you. She has missed you so much, in all honestly probably even more than your aunt Nikki, because a grandmoter's heart is only a tiny step away from a mother's heart when it comes to love and longing, so I know how much this trip has meant to her. She's be there more if she could, but she has to work and she's too far away to just pop down. But you're always in her thoughts and prayers, as you are in mine.

They have you on ibuteral right now, which is an inhalant steroid to help your lungs grow, and they continue to feed you directly into your intestines instead of into your stomach. Thankfully you have not had any really scary reflux episdoes in about a week and a half, but there is still reflux happening, and we are praying you will be strong enough soon to allow them to correct that.

We all love you so much, Devon. Your Aunt Nikki is counting the days (16!) until she gets to see your little potato head again.

Love,

Your Aunt Nikki

Devon's Benefit

The benefit for Ashley, Ron and little Devon was held this past Sunday in Sayre, Pennsylvania. Lisa Beers and her mother Pat, who are related by marriage to Ron (Lisa is Ron's aunt) did a truly tremendous job in organizing this benefit. They canvased the county asking individuals and businesses for donations of goods, services, and volunteer time, and they had a wonderful response from so many in the community. There were something like70 gift cards donated from businesses all over the area, and on top of that hundreds of items donated for the auction, including big, beautiful gift baskets and even a brand new barbq. Hundreds of people came throughout the day, and the total raised was over $2500. We are so thankful for all that was done for Ashley and Ron. Enjoy the pictures!

New Pictures of Devon!!

Oh boy oh boy oh boy!!! Thanks to my wonderful Aunt Sue, I have brand new pictures to show of our little man Devon. Enjoy!!

mother and son

I'm finally seeing some of the Marsh in Devon... he's got my dad's eyes here

talking with mommy

Devon the Lion!!!



could he be cuter?

he looks so precious in that shirt

Wow wasn't that great?! He's getting to be such a big guy. Hope you all enjoyed that as much as I did!

Breathing Tube Out (Hallelujah!)

Hello friends!

I spoke with (a very sleepy) Ashley this morning and she confirmed for me that Devon's breathing tube did come out, hallelujah, and he is breathing well on his own, with just a little oxygen help in his nose. Ashley says he's pretty cranky right now, understandably so, but she's been able to hold him and love on him.

Devon's home in Philadelphia

He is still feeding at full feeds, in fact they have upped his feeds to 22ccs now. This is fantastic news because it means his intestines continue to function beautifully. Since they have put the feeding tube into his intestines, Ashley says there have been no more acid reflux episodes.

On a fun note, Ashley and Ron got to see Bruce Springsteen play for free at a park in Philly this past weekend. What is also interesting is I spelled Springsteen wrong and my spellchecker had the right spelling. I guess "the Boss" is that important that he makes spellchecker!

I will be posting soon about details for Ron and Ashley's up and coming Benefit.

Blessings to you all,

Nicole

Kisses from Canada

Well little guy it's times like this your Aunt Nikki really wished Philadelphia wasn't a 10 hour plus drive from where she lives. Iwas talking to your mom this morning, and it was great to hear her voice, but it would have been much better to be able to give her a big hug, and then go and see you and give you a kiss. But in leiu of that I thought I'd write you here.

Ronald McDonald House, where your mom and dad are staying

Your mom said that your breathing tube should come out today, as they gave you some steroids yesterday that are supposed to bring down the swelling in your throat so you can breathe on your own again. Your mom is really hoping that is the case because she hates to see you in the discomfort of having that tube in, and I don't blame her one bit. The good news is that yesterday that were able to put your feeding tube back in, and this time they are putting it right into your intestines, Devon, so the formula bipasses your stomach all together so the acid reflux won't be an issue. This means they won't be able to start the bolus feeding right now, but the good news is you went right back up to full feeds, and your intestines are working wonderfully.

It turns out that the reason your liver is large is because when your were developing inutero, because your intestines were devloping outside your body, there was just lots of room and your liver just kept growing. The doctors say you'll grow into it, though, I guess the way a puppy grows into is ears or his big paws. :) So, thankfully this isn't anything to worry too much about.

Because of this change in plans about the surgery you will probably be in Philadelphia for the near future. I know it's hard on your mom and dad to have you there, I know they want so much to be able to take you home, but they also want what is best for you and if you need to be there longer, they are going to be strong and keep staying in Philadelphia until you can come home. You're far away but your in my heart, Devon, and so many continue to pray for you. I trust and know that the Lord is sending His ministering angels to you, precious one, and keeping you under his ever-watchful eye.

Miss You,

Your Aunt Nikki

Surgery Stopped

Greetings friends,

I spoke with my sister tonight and learned that Devon's surgery was stopped at the very last minute today. They got as far as having him sedated, but as they were putting in his breathing tube they were having a hard time getting it in place. In addition, the surgeon said she didn't realize the extent to which Devon's liver was enlarged, and that his breathing was struggling as well. With all of these considerations she decided to cancel the surgery.

Ashley and Ron were understandably shaken by this. They were disappointed, i think, not only that he wasn't able to have the surgery, but also that the doctor was seemingly unaware of his actual physical condition before starting the procedure. He still has the breathing tube in because his throat become swollen as they put the tube in the first place, so it's hard to see the little guy with the breathing tube in, and all for nothing. Ashley said they will just play it by ear when they can take it back out again, once the swelling goes down.

Until the breathing tube comes out they are not feeding him, only giving him a glucose drip intravenously. Poor Ashley was thoroughly exhausted when I spoke with her, and she said she will know more tomorrow.

Let's pray that Devon will not be in too much pain, and that the swelling will go down in his throat. Let's also pray for wisdom for the doctors to know what the next steps are for Devon. There is a consensus by the doctor and by Ashley and Ron that the surgery is not an option again in the near future, so lets pray they find another solution for his acid reflux.

Thank you for your prayers!

To My Nephew

After months of writing emails to friends, family, and complete strangers who have been praying for you and anxious to hear any updates on your life, it finally occurred to your old Aunt to put these stories of yours into a journal, a place where we can document God's goodness and faithfulness and we can also do fun things like post pictures, and catalog the loving comments and prayers that so many send back in response to your journey. Why she didn't think of this before she's not sure, but better late than never, right kid-o?


I want to start out this journal by letting you know how much I love you, and how loved you are by so many, so many who don't even know your mom and dad, so many who don't even know me! When people hear your story, of what a little fighter you are, and of God's recurring goodness in intervening in your life, they are touched and feel compelled to pray for you, and are so excited to hear updates on your progress. There are whole hosts of people that have been touched by your life, and that in itself is a miracle, just as you are. Someday I pray we'll sit down and look over this blog together. You can sit on your aunt's knee and we'll look over the stories,and the pictures, and the prayers, and you'll know an important part of your life story that so many have been privileged to be a part of, most especially your Aunt Nikki.

So, Devon, let me tell you your story from your Aunt's perspective (I'm sure you're going to hear it a million times from everyone else, but here's your Aunt Nikki's scoop). Your mom called me around Christmas time of 2007 to tell me that she was expecting a baby, and that she and your dad, Ron, were both overjoyed. And so was I! An aunt! I was totally excited and started thinking already of the myriad of ways I could spoil you rotten (this is, after all, an aunt' prerogative, unlike a mother who has to be all responsible and measured and what have you). I started buying baby clothes almost right away, and even picked up some nice books for you at a garage sale. I looked forward to reading them to you.

I was concerned when I got the call from your Grandma after your mom's first ultrasound and she told me that you had been diagnosed with gastroschysis. Your grandmother told me, and I then looked it up and researched it myself, that gastroschysis is when a baby's intestines develop outside of the body in the mother's womb. That sounded like some scary stuff to be honest, but then I read how so many babies are born with gastroschysis today, and how many of them go on to live healthy, happy lives. So I was encouraged by those statistics, and beyond that I knew that I serve a loving God, a God of miracles, who could be prayed to and entrusted with the life of a little one He created. And so right away your Aunt Nikki got to spreading the word about her nephew Devon (they had already chosen your name!) and the prayers needed for this special pregnancy.

The doctors watched you very closely and in early July 2008 they decided that you needed to be delivered, even though you were nearly 2 months premature, because they were concerned about how your intestines were developing. We were obviously concerned, but again we were praying and trusting that all would be well. There was so much prayer for you, little guy, people showed up in large numbers at your Aunt Sheila's church just to pray for you, folks states away that didn't even know your mom and dad. One group of ladies even made you a quilt, stitched together with love and prayer. Here's a picture of your mom with the quilt at your baby shower:

Here are some pictures of your mom and dad as they prepare for your delivery:

You came to us on July 10, 2008. I was there at the hospital, along with your mom, dad, and grandparents, and we praised God when you were born and your lungs were working well, and the surgeon reported that there was no visible damage to the intestines, and that you were strong and doing well. I was overwhelmed with joy to get to meet you for the first time, here are some pictures of your first day on the planet:

It's been a journey since them, little man. You've had some admittedly scary ups and downs. You retianed fluid and were swollen for weeks after your surgeries, and your breathing hasn't always been perfect. You have had jaundice from the artificial nutrition that the doctors had to give you while you were adjusting to the real food babies are supposed to have. And, most scary of all, there have been times when your bowels have seized up, and stopped processing food all together, and one instance was bad enough that you were transferred to the Children's Hospital of Philadelphia. I got to come down and visit you there, once you got stabilized and were doing much better, and here are some pictures of our wonderful visit together:



And that's where you are today. They have been a great hospital, very good to you and your mom and dad, and you are being so strong and brave and facing all of your treatments and procedures like a champ. Your intestines are doing great, you're eating as much as any other newborn would eat, and you're growing and getting stronger every day. The only thing that is holding you back right now from coming home with your mom and dad is your acid reflux. So today, possible right now as I type this, you are undergoing yet another surgery, my brave little boy. They are taking a part of your stomach and creating a new opening for your esophagus, so you won't have any more acid reflux. Your mom and dad are concerned, surgeries are never fun and always come with risk, but the doctors assure them that all will be well and this will allow you to get better and stronger so you can finally come home.

There is so much prayer behind you, Devon, and so much love. We all love you, but more than that, your Heavenly Father loves you, He knit you in your mother's womb and while we may see the imperfections of anatomy, He sees only the perfection of how He made you, and He knows the plans He has in store for you. I am excited to see those plans unfold, in the days, weeks, months, and years to come. I love you, Devon, and your Aunt Nikki looks forward to chronically your journey for all who love you, and even more importantly, for you!


Your loving Aunt,

Nikki