My Song to Vaughn

The gate is wide
The road is paved in moderation
The crowd is kind and quick to pull you in
Welcome to the middle ground
You're safe and sound and
Until now it's where I've been

'Cause it's been fear that ties me down to everything
But it's been love, Your love, that cuts the strings

So long status quo
I think I just let go
You make me want to be brave
The way it always was
Is no longer good enough
You make me want to be brave
Brave, brave

I am small
And I speak when I'm spoken to
But I am willing to risk it all
I say Your name
Just Your name and I'm ready to jump
Even ready to fall...

Why did I take this vow of compromise?
Why did I try to keep it all inside?

So long status quo
I think I just let go
You make me want to be brave
The way it always was
Is no longer good enough
You make me want to be brave
Brave, brave

I've never known a fire that didn't begin with a flame
Every storm will start with just a drop of rain
But if you believe in me
That changes everything
So long, I'm gone

The Results of the MRI

We had an MRI done on Vaughn the beginning of October and received the results that he has a tethered spinal cord. We decided to get a second opinion and after meeting with the second surgeon we scheduled the surgery for Monday. It is a rather simple procedure but none the less is still the central nervous system. We will be staying 2 nights at Children’s and asking for your prayers as Vaughn recovers. The best news of the MRI is that Vaughn’s brain is good! There is so much joy in knowing this for Jerad and I.

I cannot believe it has been 3 months since I posted an update! Asher is soooo close to walking and took a couple steps during PT for Ms. Susie and I! He is also talking so much and he is saying 2 words at a time and communicates very effectively with us. We are so proud of his development! We did go ahead and schedule an MRI for Asher in December as there is a chance that the tethered spinal cord is genetic and not environmental.

Both boys are just loving practicing walking and our backs are sore but we are thrilled to have this “problem”. Thank God for Asher’s walker! Vaughn doesn’t quite have the upper body strength to pull the walker but Jerad’s brother gave us a toy that you push and Vaughn loves it and walks with this push toy. Vaughn has started talking and signing too and it is the cutest thing! He sign’s milk and more (and says them but they sound very similar) and signs eat. He says bubbles, show and is starting to ask for his pasi. I am truly enjoying watching him learn!

We had a great Halloween; it was exactly what I wanted. We went up to Eric and Jenelle’s and trick or treated with our cousins. The twins love their “big boy” cousins and missed our “big girl” cousins. I was reminded how good it felt to be with family and the importance of making time to be together…. We want to set a presentence for Vaughn and Asher what high value God places on family and Jerad and I haven’t done a great job this far, so we will be setting a new standard going forward.

Since this is November, the month of Thanksgiving….. I want to share what I am thankful for. First and forever, JESUS. The one who made us in His image and gave us family, community and emotions. I am super blessed by a community of women whom we all share one thing in common, we have twins. These women are funny, talented and beautiful and accept me exactly as I am. We laugh together, cry together, serve together and take care of each other. I am proud to be a Darling Doubles member. My heart is glad and happy to call them family.

Being made in His image is a huge thought. I mean think about, we were made in God’s image. We studied this concept one evening with another community that we call family that we Live One Life with and as I was thinking about what I am thankful for; I realized it is emotion. That we have the ability to express faith, hope and love. And those of you who know me well know that I am a little over emotional at times (I know and understatement)and though I feel this is one of my greatest weaknesses, it is also how God shows Himself, His character to me. He has the very same emotions and uses them to teach, correct and train me into the woman He created me to be.

 

With that said I want to share a video that encompasses these things……..As you know, we waited a couple of years to become parents and were blessed to tell our family on Easter that we were expecting. At the time of the video we didn’t know that we were having twins. My Mom and Brother were not able to be there but as Jerad and I drove up to Estes Park with my Dad, we were feeling so many emotions! I already knew EXACTLY how I wanted to tell our family. God was very clear with me when He showed me that I was to marry Jerad and He did so in using our oldest nephew Sam. Both Jerad and I have a special connection with Sam as he is the first grandson and a little older than the rest of the cousins so we had the opportunity to spend some time with just him, as he has grown into the young gentleman he is today. When we got to Nana and Papa’s, Jerad took Sam aside to tell him that we were pregnant as Sam typically pray’s over the meals. We asked him to end his prayer by saying how thankful he was for the baby growing in Kristie’s belly. Looking back we should have told him to say how thankful he was that I was pregnant because, as you will see….. I think my sister Jenelle was the only one that got what he was saying!! The man hugging me at the end is my Dad and a good representation of how much our Heavenly Father feels what we feel here on earth. So enjoy a little glimpse of our family’s emotions and how I think God feels about us. May each of you be BLESSED this Thanksiving season.

 

 

Blessed

Did you know that Asher means blessed? He is our “Baby B” and we felt so blessed to be having twins that there just wasn’t a better name. I wanted to share just a couple things about our happy Baby B as typically the blog is about our Baby A, Vaughn. Asher’s journey has been a little less complicated but never the less, just as eventful.

He is talking so much! I would guess he has 30 words and a good majority of them are accompanied by signs. He enjoys signing and is beginning to understand the cause and effect of his communication. He is a sponge right now and repeats almost any words we say to him. He is becoming a bit braver and has started pulling up to stand on the furniture and making progress in his walker. We do think he is going to need orthotics to start walking independently. I am loving having both boys crawling! Asher loves to go outside and play at the water table and is becoming more tolerable of the grass.

The name Vaughn means small (it doesn’t mean weak though)…...David must have looked so small to Goliath and yet David was the one with the courage to fight.

Vaughn has been on a low dairy diet since the middle of July and things are looking up, including his weight. After the FTT diagnosis we went back to the Doctor and in the 2 weeks since he went off of milk and dairy he gained 14oz’s in the 2 weeks! We were thrilled and the vomiting had slowed down and by August has stopped all together.

We were seen at the Children’s Feeding Clinic shortly after my last post and the good news is, with the help of all our therapists we are already implementing a lot of the suggestions this team offered. They did explain that Vaughn eats at the level of a 9 month old. Their observations were that he eats slowly and to help him get more calories in at a meal, we should try to always give him applesauce; yogurt or pudding per meal as we can spoon feed this to him. This has been a little difficult as he has become independent at meal time so he gets a spoon and I get a spoon and we both take turns.

We had a gastric empty study on Monday of last week and the results showed us that Vaughn’s stomach does empty at a slow rate. In 60 minutes, his stomach should have emptied half of the 7oz bottle that he drank. The GI Doctor was able to estimate by the rate his stomach was emptying that it would take 106 minutes to empty just half of the milk (formula) consumed. I was actually thrilled that something was wrong, we finally have an answer to some of the challenges that Vaughn faces. This explains the acid reflux, vomiting, and even the reason for the small meals as he doesn’t have time to get hungry in between meals and snacks. Typically kids grow out of this gastric delay and for now we are starting a medication that should help his stomach empty at a faster rate. We are hoping this medicine will allow for more calories to be consumed in the day so Vaughn will really start to grow.

We are making the least amount of changes to his diet to help us determine if the medicine is helping so for now, we are staying on the low dairy diet. We go back to the GI Doctor in 6 weeks for a follow up to decide if we want to continue the medicine and start allergy testing. We have added an RD to the therapy team as high fat foods are the foods that stay in the stomach longer and can be harder to digest and that has been the diet Vaughn has been on since he came home from the NICU. We are working to find a good healthy balance for Vaughn and she will be doing bi weekly weight checks on him (here at the house) for a couple of weeks so we can chart the growth.

We started dilating Vaughn’s right eye (the good eye) to force his brain to use his left eye more as the glasses have become almost impossible to keep on. The drops last for 3 days at a time and we dilate twice a week for the next couple of months to see if we can help the left eye track the same as the right. The dilatation doesn’t seem to bother him and this is much easier than trying to patch his eye. We are praying this will be the solution.

I am not sure I will ever know the answers to the “why” questions regarding my sons, so for now I am content with asking if they want milk or juice with lunch and will be grateful for the story that unfolds before me.

To Thrive

 

The definition of the word thrive is: To make steady progress; prosper. To grow vigorously; flourish. On Friday Jerad and I took Vaughn to see the Pediatrician and we discussed monthly weight checks for him as he is failing to thrive. He is failing to thrive because the throws up a lot. When I say a lot, I mean monthly. We thought this was just Vaughn, maybe due to his acid reflux or a mismanagement of food. And maybe it is one of those reasons; regardless it is time to find out why he is failing to thrive. It is hard to crawl, speak or process new information if your body is working overtime just to survive and that time is now for Vaughn to make steady progress; to prosper and to grow vigorously. We have an appointment next month with the Digestive Institute at Children’s to begin the investigation into what could possibly be  making it difficult for his body to digest his food. Is he beginning to show signs of a dairy allergy? I am keeping a food diary of what he is eating and it seems to be coincidence that it is associated, some of the time with dairy based products. The dietician that we spoke with on Friday advised us to take him off of whole milk and just offer formula until we can see the GI specialist. We are also working on re- scheduling an appointment with the Children’s Feeding Clinic to see if he might have some problems swallowing his food and we just aren’t noticing the signs.

 

Vaughn is one tough kid. After he throws up, he usually is smiling but my concern is he will begin to have an aversion to food and associate eating with throwing up and then we will have an even bigger problem in the future. I am sad that in our last month with bed time wearing only of his helmet he didn’t grow 1 once. We are out of time; there is no more foam in his helmet to shave out. His head looks really great and I am extremely thankful that we decided to put him (them) in the helmets but the roundness isn’t the “5” that I was hoping for. Now that the helmet is off, it is been very challenging keeping the glasses on. We are supposed to be patching his right eye for 2 hours a day and because we have been so focused on his diet, I have only done it one time and it didn’t go well.

 

I spoke recently to our genetics counselor and we have scheduled an MRI for Vaughn in October. We wanted to get this procedure scheduled but didn’t want to rush into putting him back under anesthesia either. We are only waiting on one more genetic test to come back but since everything else has come back negative, we have a feeling this last one will also (the last genetic test associated with the eye).

 

I am sitting here so frustrated. I feel that Jerad and I have walked this journey with grace and honestly I decided from the start not to ask God why as it didn’t matter. We didn’t ask why we had a high risk pregnancy or why the boys were born at 29 weeks. I didn’t ask God why Vaughn was born 1pound 4 ozs or Asher at 2 pounds 5ozs. This was the journey we were walking and by faith, I knew we would make progress. I have to admit though; I am starting to ask God why. WHY after all we have been through, can’t Vaughn at least prosper? He wants to crawl and he wants to talk, he just doesn’t have the energy to grow vigorously. I am mad. I am struggling with the journey of being a parent. Jerad and I choose from the moment we found out that we were pregnant that we would be in partnership with Him in this adventure and that decision remains the same but for this moment, I just have to express my reality.

 

With all that being said, I wouldn’t be me if I didn’t end this blog with the truth. The truth is; Vaughn will flourish. We will find the answers we seek with the help of many medical professionals and Jesus. Vaughn will thrive because he was created in God’s image. He is the son of the one and only Heavenly Father and is loved beyond measure. We are taking a more aggressive approach to Vaughn’s health and I know that “failure to thrive” won’t be a diagnosis that labels who he is. This is just one more expression of our faith that gives us the opportunity to hand Vaughn back to Jesus and say “We trust You with his life”. We trust you Lord and Jerad and I will continue to bless him with more of YOU.

 

We thank you in advance for walking along side us, reading the blog and most importantly praying with us as we do our best to keep each of you updated. I wanted to be really honest about where we are at so you know how to best cover us in prayer. My desire for this post is that after reading this, you see that HOPE isn’t lost in our family, that we know that we know that God will be glorified in our story, this just happens to be a time of seeking and learning more about the characteristics of God and how we can continue to love Him in the midst of heart ache. As Jerad and I have been discipled in our faith, we have been taught to be good question asker’s of God and I believe it is time to ask some questions and not be afraid of the answers. Just asking “Why” isn’t enough, so as we search out His response, be encouraged that this chapter in our lives will end with joy and jubilee.

Milestone Memories

We officially have a crawler! Asher has been crawling for a couple of weeks now and I have been trying to get the perfect video and decided that the couple that we have are perfect enough because he is mobile. We are so very proud of him as we had just about given up on practicing crawling and were starting to focus all of our PT time on standing and walking and then one Tuesday evening my Mom sent us a video of Asher crawling. His motivation you ask, the remote control. They love to watch Baby Einstein.  

The boys and I have had a busy couple of weeks as we saw the eye doctor last week and the helmet doctor this past Tuesday. Vaughn’s left eye is about the same but the eye doctor did say that she thought his glasses were helping. We should also begin patching his right eye, slowing working up to 2 hours a day. We haven’t started this as we were waiting to find out the progress with Vaughn’s helmet. The good news is we are a month away from being finished completely with helmets! This 5^th scan showed that we made another millimeter in progress moving us to an 8. It wasn’t what we had hoped for but any progress is better than none. I know that we only have another month in his helmet as we have shaved away all the foam that we can in the area’s we are trying to round out. The advice of the helmet doctor was to only wear the helmet at nap time and bedtime as Vaughn is beginning to grow out of his helmet. We agreed with this recommendation as we have moved into summer and we believe that the torticollis will improve the more he is out of his helmet. This will also give us more opportunity to practice crawling with Vaughn as it was so hard to build upper body strength and lift his head to crawl with the helmet and the disadvantage of the torticollis. We are praying that we will have another crawler in the near future.

In March I wrote about the Tortoise and the Hare and over the weekend, Vaughn decided he didn’t want to take his afternoon nap so while Asher was sleeping; I played dress up with Vaughn. I have come to the conclusion that playing dress up is typical, the norm really. J Here is a picture of my Tortoise and because Vaughn has been in his helmet for so long, he is really good about wearing hats. My sister Jenelle gave me this hat and I just couldn’t resist taking a couple pictures of my Cowboy. Asher‘s first word was “dog” and on Tuesday when we were playing with a ball, Vaughn said “ball”! I actually got it on video because I was trying to capture Asher crawling! Maybe Asher will be a veterinarian and Vaughn will be a soccer player…. Isn’t fun to dream about who God will mold your children into being! The milestones that the boys are making are such sweet memories for us…..

To See

Vaughn and I visited the eye doctor a couple of weeks ago and found out that his left eye, tricked us. Jerad and I knew that there was a very likely chance that his eye wasn’t going to continue to improve on its own but because we finally received some good news following that previous eye appointment back in February that we rejoiced at the positive outcome for Vaughn. It was also one less accessory that we had to dress him in each day. We see the eye doctor every 2 months so this was a routine check up, but the timing happened to be perfect as just as we were approaching this appointment we started to notice that left eye start to track funny. It is very subtle and so I waited to see if Jerad would notice without me saying something and he did, so we had an idea going into this appointment that Vaughn’s glasses would be making a comeback.

At our last helmet appointment I mentioned that I had a feeling we would need to start wearing Vaughn’s glasses and that trying to slide them in between his face and helmet didn’t work because he could pull them off. We were given some velcro to try and we are thankful that it worked! We are able to keep his glasses on and wear his helmet by adhering the glasses to the outside of the helmet (see the picture below because if you thought he was cute, he is even cuter now). Vaughn had his 4th scan and we moved 3mm and that is the progress we were praying for! He went from a 12 to a 9 and our goal is a 5. We go back in a week to get another scan and to find out if we are close enough to be finished. The boys had their first colds at the end of April and were not eating so I don't think he moved another 3mm. Here is the scan:

                

I was discouraged at first…. Thinking really, the one thing that was going well and now I have to ask my son to not only wear a helmet but put his glasses back on. And if we couldn’t keep the glasses on, we were given some patches to try. I feel good about the glasses now though so we will wear them until our next check up to see if they are helping.

It was raining yesterday while I was driving and talking to the Lord and asking for some understanding about Vaughn, his delay, his helmet, his eye and a song by Laura Story came on the radio called “Blessings”. I have heard this song a million times (and will put the lyrics at the end of this blog) but today, as it was raining, it spoke to my heart. Here is the chorus:

“'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise”

What if the trails that we face with having premature babies are really God’s mercies? This song motivated me to get into the word and seek out the verses’ on “to see” and there wasn’t any on to see but there were some on “sight”. 2 Corinthians 5:7 says “We live by faith, not by sight”. That faith word has surfaced again. We walk by faith, we live by faith. And isn’t faith believing what the eyes cannot see.

http://www.youtube.com/watch?v=eOOFAaUGfRE

Walk By Faith

Jerad and I had a tough conversation with Ms. Susie on Monday. While they were working with the boys, I made a phone call to our genetics counselor as it has been about 9 weeks since Vaughn’s first blood draw and we were curious if any results had come back as Vaughn just doesn’t like to put his feet on the ground, when you lift him into a standing position, he pulls his knees up and if you can get his feet on the ground, then he stands on his toes. Jerad and I knew that one of the tests that were going to be run was a Creatine kinase test, checking out the structure of his muscles and last week Michelle and I had discussed calling to see if there was a diagnosis yet. Both boys just don’t like and I am tempted to even use the word hate, putting pressure on their arms and shoulders so that makes the desire to crawl non-existent. After speaking with our genetics counselor some of the results of the test had come back.

The first round of blood drawn was dedicated to the genetic testing. They started with 3 tests that are associated with the eyes. The doctors’ assumptions are that Vaughn has a syndrome called Lenz microphthalmia. These tests are looking for any mutations in single genes associated with lenz syndrome and microphthalmia (small or lazy eye). The first test was for “BCOR” and it came back normal. The SOX2 and OTX2 haven’t come back yet and we should know about those in May and June.

The second round of blood drawn was for the Creatine kinase (muscles), Thyroid, amino acids and urine acids. The results also were in regarding these tests and they were all NORMAL! This is great news but means that Jerad and I will now add to our prayer list having Vaughn go back under anesthesia for an MRI this summer. Both boys have developmental delays but Vaughn’s seem to be more significant. Vaughn’s developmental delays could reflect central nervous system maldevelopment including neuronal migration disorders. We had ultra sounds done in the NICU for both boys, on their brains to look for any brain bleeds and at that time there were none but the doctors would like to look again now that he is older and showing developmental delays behind even his corrected age.

My heart is grateful that so far, we don’t have a diagnosis but the fact remains that something is wrong. Vaughn’s torticollis is about the same and we continue to ask God for healing. I titled this blog, Walk by Faith because the hard conversation that took place after my phone call with genetics is that there is a very real possibility that the boys will need walkers. Imagine a walker for an elderly person and turn it around and that is the device the boys will need to walk. Asher really likes to stand at his table and play and so Ms. Susie and Jerad and I feel confident that Asher will graduate out of the walker and only need it for a short time as he is learning to walk. As for my super hero Vaughn, we will wait and see. We discussed the reality that he might need the walker for his first day of kindergarten.

Wait and See. I feel like Jerad and I live in a waiting room, waiting to get off oxygen, waiting for the neck brace, waiting for them to gain weight and catch up. Waiting for the helmets to work, waiting for God to be God and remove the torticollis from the list of syndromes that label Vaughn. To See. Waiting to see if the glasses will help Vaughn’s brain communicate to his left eye that it is able to work and see. I asked God for a word, something to hold on to when I feel frustrated and overwhelmed and I love Him so much for His faithfulness as He didn’t make me WAIT for His response. He said, “Walk by Faith”.

I knew right away what He meant, if I walk in the faith that I know and believe in, He will take care of the physical walk.

I turned to the Bible to see how many scriptures reference the word “walk” was in and there are many! The concordance says that this is the definition of walk “to advance by moving the feet; a person’s usual mode of behavior; see STEP, WAY”. A person’s usual mode of behavior…… my behavior is my communication with Vaughn and Asher. Jerad and I have the choice to choose joy in this trial and see a walker as their independence not a handicap. Our physical therapy goal for the boys was to walk by age 2. I am going to change that goal to crawl by 2 and even if we don’t crawl, walking is the main objective anyway. Our spiritual goal for the boys is to teach and train up, independent God loving and God fearing gentleman and if one of the ways they learn this is by using a walker, then my attitude will be full of faith that the walkers will only be used for a season. We serve a big God and trusting Him every STEP of the WAY is my heart’s desire. Thank you Jesus for reminding me yet again, who is in control of our lives. As we camp out in this waiting room, I am going to decorate it to my liking, teach the boys to share and tell them the stories of Noah and Moses. I am going to label our waiting room, Psalm 37 as the theme of this poem is about trusting in the Lord and waiting patiently for Him to act. I will fill this waiting room with laughter, songs and make it a productive time because really, life is about learning to be patient and we are blessed to be able to use these moments to develop our character and grow as a family. This family will walk by faith, even if it looks a little different for each of us.