My Happy Birthdays

Today is my 29th birthday!!! I wanted to just post this little timeline of my last decade because it's just amazing to me how much 10 years can change a person. 10 years ago from today, I was a waitress and I was single and not even remotely interested in dating. My 5 year plan was to do some world traveling with my dad for the next two years while finishing up my journalism classes. I then wanted to start nursing school and become a nicu nurse. (little did I know that the next decade would give me personal experience in the nicu with my own 3 preemies that would even more solidify that desire) I thought I would marry around age 27 or so and have kids around 30. I wanted a career more than anything else for my life. I wanted a family, but it just wasn't a priority. 

Anyways, I am so grateful God knows best and works things out for our good because I can't imagine if I had stuck to my plan and never married my husband or had our kids. I can't imagine I would have been near as happy or fulfilled had I finished my schooling and become a nurse and never had my own sweet little ones. Of course, the current "plan" is to still go through nursing school once Jaxon is in school (but of course, I now know as much as anyone that even that may change) but I just don't want to miss even a second of their lives that I don't absolutely have to. I am so grateful for a husband who works so hard and affords me the opportunity to stay home with them. I am so blessed with my life. If I had known back then what it would be like now, this is exactly what I would have set as my 10 year plan. Things may not have always been easy or gone the way I wanted, but the end result is exactly "everything I never knew I always wanted". (I've always loved that line from the movie Fools Rush In) :) Anyways, here is the timeline of my last ten years. I am so excited about this final year of my 20s. I am so excited to begin a new decade next year. I am such a blessed lady and thank the Lord so much for giving me the life He gave me!

In 2005, I turned 20 years old and kicked off this past decade of my life with an amazing trip to South Africa with my dad. 

In 2006, I married my husband, 

In 2007 I started working at our church and running the women's ministry, 

In 2008 I got pregnant with our twins, Aubree and Nicholas and we bought our first home. 

In 2009 I had the twins and got pregnant with my little Annabelle. 

(Aubree at about 12 hours old)

(Nicholas at about 12 hours old)

 (This is me actually only 5 days she was born)

In 2010, I delivered Belle making us a family of 5. 

 (Me and Belle in recovery. She is about 45 minutes old here. My big ole 9lb baby)

 (First Family of 5 photos)

 (Annabelle at 6 months old)

In 2011 we went through the most major changes in our family, losing our home, being out of work most of the year, a cancer scare with Nicholas and so many other things that made us into a stronger and more united family than ever. 

In 2012, we found out we were pregnant with Jaxon and then delivered him 3 months premature. 

(Me holding Jaxon at 2 days old. He was able to come off his breathing tube for almost a day so I got to hold him really early for a micropreemie)

In 2013, we brought Jaxon home from the hospital and went through the biggest change as a family ever that has once again, changed the entire dynamic and purpose of our family unit. 

(The kids in September. Jaxon is 9 months, Annabelle is 3 and twins are 4)

2014 is just over halfway finished but so far, we have become the ambassador family for March of Dimes, have joined several other advocacy groups and have been able to work with so many other families going through the struggles that come with having a sick baby or child- a mission that I intend to work with for the rest of my life. 

 (All of us at the beach in spring 2014)

This last decade has been hard and stressful and seemingly impossible at times but has been such an amazing ride! Today is the first day of my last year in my 20s. A lot of people enter their 30s regretting many choices they made in their 20s but I am so glad that I have no regrets and can look back on this past decade and be proud of all I have been blessed with and all that the Lord has given me the opportunity to do!

Miracle Named Kylee

Our first Monday's Miracles post comes from some of our best friends! James and April were two of the people who really helped us through our battle with Jaxon. They had been through so much with their own little girl Kylee. I wanted to share their story to launch this new series because I know it will inspire so many of you!!!

 

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When we think of a miracle it is something extraordinary that amazes us into a state of awe.   When you have a baby everyone calls it a miracle, which it is. This time in anyone’s life is just simply amazing.  The baby’s coos, wiggles and cute facial expressions keep us in a constant awe with this new miracle.  But what happens when your miracle is born different.  Some would think it takes away from this beautiful miracle known as your baby.  Although it can be overwhelming and we can lose focus at times, this sweet special baby is the biggest miracle you may ever see.  For our family it added to our amazement in everything that Kylee ever overcame and accomplished.  Anything that Kylee did was a miracle and I began watching for “daily miracles” that God would do in her life.  Although we were praying for complete healing for Kylee, at the same time we did not overlook what God was doing every day in her and through her.

 Our little miracle, Kylee, was born a pink, round bouncing baby girl on February 4th 1999.  We loved her instantly and saw nothing wrong, that is, until you saw her back.  She was born with a significant opening on her lower back, called Spina Bifida.  This required Kylee to have her first surgery within hours after being born, before she was 1 day old.  Surgery went good and they were able to close her back most of the way.  We had to learn how to care for this properly so that she would not get an infection.  Within a week her Doctors knew that she would need a shunt placed in her head to relieve the pressure accumulating due to closing her back. So her second surgery was scheduled at one week old.  God brought her through both of these successfully and after she stayed in the NICU for a total of 3 weeks we prepared to take her home.  We had learned how to take care of all of her special needs including catheterizing her every 4 hours around the clock.  

 

 

 We were so excited to have Kylee home that we didn’t care what we would have to do!  We did everything the Dr. had told us and lived with minimal sleep as most new parents do.  At the time, James worked night shift so he did the middle of the night catheterizations so that I could sleep.  That helped so much because I needed to be ready for the morning.  Not only was I taking care of Kylee but Shayne, our older daughter, was 19months and a busy toddler.  Only through God’s strength could I even accomplish what needed to be done in a day.  

 Kylee was only home for 3 weeks before we ended up going to the local hospital. It seemed like she had a cold so they kept her overnight.  They tried their best but they were not set up for all of the equipment they needed for her. The hospitals power kept turning off the circuit breaker in her room.  Kylee didn’t have a cold, she was having common issues of Spina Bifida, which include the inability to swallow correctly.  While she was in the hospital she ended up aspirating while eating and placed on a ventilator. This was the first of many scary events.  Within a couple of hours they airlifted her to Loma Linda Children’s Hospital.  As our whole family stood at the hospital, watching Kylee get loaded into the helicopter, we prayed that God’s hand would be on her through whatever was going on. It’s such a scary feeling to see your 2-month-old fly away in a helicopter but at the same time we all felt the peace of God.  We quickly followed by car and arrived before they even had her settled.

 We didn’t know what to expect as she was admitted to the Peds ICU.  We had a great support system, which consisted of family, friends and our very supportive church but we had no idea what we were headed toward.  Nothing could prepare us for it or teach us the way that you learn by living through it.  We needed God to strengthen us.  God didn’t just walk beside us through the next season but He carried us through the next season.  There is no other explanation for the peace that we had.  This hospital stay was almost 4 months and in those fours months Kylee had some close calls.  She had 7 more surgeries, many procedures and a major medical mishap by a nurse.  This malpractice caused Kylee to be on 9 antibiotics for 6 weeks and have many more tests, procedures and medications in addition to what she was already fighting.  In this season, Kylee was also pre diagnosed with cancer from a tumor they removed from her brain.  After we heard the news of cancer we prayed for a miracle knowing that her tiny little body couldn’t deal with cancer and radiation treatments.  Our amazing God healed her from it! When they got the final results back they said they don’t know what it is. We still laugh about this today, that God changed it to something they had never seen.  

 

 

 When we came home from this hospital stay we had even more equipment added to the normal schedule.  Kylee came home with oxygen, a kangaroo pump, g-tube, pulse-ox monitor, apnea monitor and 2 suction machines.  We had a mini hospital.  At 21 years old, and James 22, we were not just young parents of 2 little girls but we also became medically savvy within a few months.  

 Although Kylee’s first year was trying with several more hospital stays and surgeries, it was a time that we learned so much. Not just medical knowledge but we learned about God and how much He loves us.  We loved our little miracle girl but we also knew that God loved her more than we ever could.  We learned that God chose us to be her parents and love her and take care of her for Him. What an honor!  Kylee was God’s baby!  He had his hand on her life constantly as well as ours.  Knowing this, made us fall in love, even more, with God.  There wasn’t a decision that we made without asking God because we also learned that He was our counselor, comforter and friend.  Kylee was not just a miracle by what she overcame but she was also a miracle in what she taught us through her life.  We learned to trust that God was with us and leading us in every situation through the years. We relied on God’s strength as Kylee had 8 more surgeries, numerous hospital stays, several ambulance rides, 3 more helicopter rides and many more procedures and appointments.  

As Kylee grew older she became stronger but still had many things to overcome.  Anything she would accomplish we would tell her “good girl”! So that became one of her first phrases that she said and continued to be her favorite.  It was good that Kylee was determined, stubborn, joyful and a silly little girl to accomplish what was needed.  She always learned to compensate for what her body lacked.  Even though she had P.T and O.T. for years she didn’t usually cooperate with them, she wanted to do things her way.  She figured out how to crawl even though she had no use of her legs.  She could get anywhere she wanted to and get away from anything or anyone she wanted to.  She eventually had a wheelchair that was custom fit to her.  This gave her the ability to roll all over the place, and like any child, she liked to go fast.  She would get all tangled up with her 100-foot oxygen tubing but we would just untangle it and she would be off again. One of Kylee’s favorite things that she loved was her music.  We had kids worship songs playing all of the time but if a song came on that she didn’t like she would immediately crawl to the CD player and remove the cd.  She always knew exactly what she wanted and most of the time Kylee just wanted to have fun and play.  She enjoyed her life even though it was difficult.  She taught us to enjoy today because we never knew if she had tomorrow.  She also taught us what it is to have true joy even while going thru a hard time.  I know that God gave her peace and was with her everyday and especially in her scary moments.  She dealt with pain and difficulties everyday and yet she had joy every day.  

 Kylee lived a short but complete life of seven years here on earth.  Now she lives forever with Jesus, completely healed and completely whole in the arms of her savior.  After all, she belonged to Him all along we were just able to care for an angel for a season.  While Kylee was here, she was loved by everyone who knew her and she loved her family and friends.  Her determination, joy and peace passed all understanding.  I am confident in knowing that God placed her in our life for His purpose.  She changed our life forever and the lives of many others.  She carries an amazing testimony. A true miracle.

 

 

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Don't forget, if you want to get reminders each Monday when a new Miracle story is published, just subscribe to the blog by entering your email address over to the top-right. You can also follow on instagram (@jaxons_journey), facebook or pinterest by clicking the icons to the right and following/liking. We will post the link on each of those sites every Monday when the posts are published

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MADHOUSE Organizing with Children!!

I walked into the playroom this morning and what did I find? The large round bin that holds all the kids toys had been dumped out into a messy pile in the middle of the room. Where were the kids? They were back in their rooms playing with their dress-up clothes! I called them all into the playroom and told them to clean up the mess or I will start putting their toys "IN JAIL" ***I put them in a box on a high shelf until they post bail---either chores they have to do to raise enough "money" to buy them out of jail or by good behavior***. When I told them this, my little wise guy Nicholas said, "what toy are you going to put in jail?". I said, "I'm going to put your hot wheels in jail". He looked at me casually, shrugged and said, "I don't like my hot wheels anymore. You can put them in jail." I was quite aghast and told him, "you are still going to clean or I will put ALL your toys in jail". Once he saw me pick up his Captain America action figure, he got to cleaning instantly. Every year after Christmas and birthdays, whenever they stock up on toys, I always do a basic cleanout where I will throw out an old toy for every new toy they receive. It has helped somewhat but somewhere along the way, I have made horrible calculations because toys still seem to be growing out of our walls! Less than a few hours after that first incident, I walked into the playroom again and what did I find......YES! The toy bin once again had been dumped out in the middle of the floor with not a kid in sight! I wanted to call them in to clean it up again but unfortunately this time, I had just layed them all down for their naps. I debated a moment whether I would wait and make them clean it when they awoke but I decided instead, to sort through them and "JAIL" the toys I thought would impact them the most. As I sat and picked up the toys one by one, putting them each in the bin, I noticed that 90% of the toys were not anything I would even care to play with if I were a child. I remembered a year or so before when I had made the decision to keep that toy and throw out a different one and I no longer could remember what made me make that decision. Then I thought of Toy Story and how every toy wants to be wanted. Then I wanted to watch Toy Story III because it's the best movie ever! But I started to get an idea about how to organize their toys. I have tried a LOT of different ideas. Last year, I got rid of ALL Nicholas's toys EXCEPT his hot wheels and costumes since those were the only things he plays with and for the girls, they got to keep barbies and their good baby dolls that still had all their clothes and shoes and their costumes as well. Everything else (games, tea sets, army men, etc) we threw out and we did their rooms around those toys they kept. That did not work even in the slightest. The year before that, I went organizer-crazy and got bins and baskets and boxes and we sorted all toys into their own designated spot. That worked for a few weeks until we started finding a few toys here and there that didn't really have a designated spot so we turned one bin into a "miscellaneous" bin blurring the line of "designated toys" and "miscellaneous toys" and soon after, ALL bins were miscellaneous bins until the bins themselves became toys.....then became broken, therefore becoming weapons, and finally....becoming trash. I am taking all the many failed organization attempts into deep consideration as I put together a schedule of how to get everything organized and stay organized having 4 kids ages 5 and under in the house! (and a husband which, we all know is like adding another 2-3 children, depending on temperament) :) This is no easy feat. Maybe we should just move and leave everything behind and started over afresh! I swear sometimes I feel like that's the only way we will get these sorts of clutter/organization issues taken care of. Well, just had to vent a bit about this but I guess it would actually be a much better use ofmy time to shut the computer down and actually start working on the issue at hand :) I'll come back and add some pictures for a bit more color on the post a bit later. ..............I really just can't get up the energy to do this right now. :/ Ok, bye!

Here is my hubby with the kids last weekend when we went to the beach. It was such a beautiful day!

The Almond Branch Promise

Can't believe we are already at the halfway point of Jaxon's SECOND YEAR!! Please watch this video and read my post below. You can also click on the video link below:

JAXON'S FIRST YEAR video
^^^^^Click here ^^^^^

The Lord gave me a word for Jaxon when I was still pregnant and doctors were insistently telling me that I would deliver him at 23 weeks (17 weeks early and the earliest doctors will resuscitate a baby). The world was becoming chaotic and the Lord just gave me peace and put on my heart Jeremiah 1:5-19, that my Jaxon Jeremiah has a great calling on his life to be a refuge for the sick and the broken, those persecuted and weak, for all in need. And He assured me that this calling on his life would not be robbed from him, that it was an "almond branch" promise- the almond branch represents God's faithfulness to perform His word. He said of the vision Jeremiah had of the almond branch "I am watching over My word to perform it". Nothing about the promise could slip from His watch. He is focused on it. He's intense on it. From that moment, sitting in my hospital bed with IVs, medications and in active labor at only 23 weeks pregnant, I never doubted Him. I had such peace about our situation. I still thought my Jaxon would arrive within hours as the doctors had said, but it didn't matter. My Jaxon wasn't a statistic anymore, He was a WORD from GOD! All the resources in the world could never hold up against that. If God can speak all life into vast emptiness, I had no doubt His word was life in my son. Of course, now we know the great miracle He performed for our family in giving us another 25 days before delivering Jaxon. This is a video my husband made for JAxon's first birthday of his first year. I hope you will watch it and see how great is our God and what amazing and wonderful things HE has done for our family! I don't ever want to forget where life took us during that year because even though it seemed impossibly difficult, many of the greatest moments of my life happened because of what we went through.

Spring Cleaning

Our house has become so crazy overrun by toys, clothes and, weird enough, medical equipment. I'm not talking about thermometers and tylenol, no. I'm talking about cannulas and oxygen tanks, stethoscopes,  pulse oximeters, etc. Jax is doing so well now that I hardly use any of it anymore but it is still so hard to get rid of. After talking to many preemie moms, I know it's typical and probably somehow connected to the ptsd that most of us suffer for years after our preemies are born so at least I know I'm not crazy, but I still really want to get rid of it all to prove to myself that I am confident and moving forward in this rocky long journey. I decided to just allow myself to do so slowly and progressively so I am giving myself to the end of this year to be rid of it all. But to be sure I continually work towards this goal, I will make myself get rid of at least one thing every single week. This week I'm going easy on myself. (Week 1 and already trying to cheat the system) today, I am tossing out all the gauze. I was going to get rid of the tegaderm (transparent tape that held his cannula on his face) but anything that had to do with his oxygen, I find it the hardest to part with. I know that sounds so dumb because you would think I would celebrate while getting rid of it all, but for some reason, I have some crazy bizarre attachments  to all his oxygen-related equipment. Maybe in a few weeks for those things, so I'll just keep my first step a baby step with the gauze. So farewell gauze! I really hope I'm not suddenly going to need you tomorrow. (Whoa! See? I'm already regretting choosing the gauze. I might need it for something. I mean, the last time I used it was probably 6 months ago, but you never know right?) Ok, be brave. I can do this.  People live their lives every day perfectly fine without 2 pounds of gauze in their medicine cabinets. And......it's gone. Now I just have to run it out to the trash can before I decide to dig it back out. :) so, there you have it folks. I have officially proven that I can, in fact, move on from this crazy, sterile, medically equipped lifestyle I have lived since December 1, 2012. 

But, for more interesting news, Jaxon will soon be starting back in his speech therapy. We got all the issues worked out and are now just waiting for them to call to schedule his next session. Also, his eeg did not show seizure activity so we are waiting for an appointment with the neurologist to discuss other options. His developmental assessment with his high risk doctor went well. He did excellent with cognitive and fine motor skills. He was good with gross motor but of course, his speech was extremely delayed. But we are already in therapy and working with ent and audiology for that. He will have another abr as well as his follow up with ent and audiology next week.  His high risk doctor mentioned a possible assessment for hearing aids but that will depend on his abr results as well as the ent's opinion. Well, that's about it for the update. I just got a new phone (switched from iPhone to galaxy) so trying to figure out all the different ways to do things so I gotta figure out how to load pictures but I will ASAP.  For now, this will just have to be a boring colorless post, but later I'll add the photos and it will be ***mindblowingly***  awesome!!! I'm talking pictures of gauze in the trash can, medical equipment shoved in cabinets....it's really going to be epic! So hold on to the edge of your seats so you don't shoot through the roof in anticipation and hopefully within a few hours you can reread this with the photos and know that you are finally a fully satisfied and complete person.

Ok, just added two photos but can't get the others. The first one is of about a third of our supplies. The diaper picture is Jaxon diaper he wore the first 2 or 3 weeks in the nicu. Look how tiny it is in my hand! (It was in the med box so just had to revisit a bit)

Parents of Preemies Day

Want to wish all my fellow preemie parents a happy Parents of Preemies day bc not only are our little miracles strong fighters, but we as their parents, who sat at their bedsides for countless hours every single day praying and crying and cheering them on at every moment, the ones making those life-altering decisions not knowing for sure if it's the right one but hoping with every ounce in us that it is, staring at our phones all hours of every sleepless night hoping it doesn't ring but ready to answer the instant it does, researching every possible diagnosis, medication, machine, treatment, and every other even remote possibility our baby may ever have to face, creating community with every other Nicu/preemie family we come into contact with because they are the only ones who understand our desperate hopes and our desperate fears, celebrating every single milestone (and by the way, a preemie milestone is even as simple as "he drank 10ml today!!!!"), we as the parents of little miracles are also strong fighters! 

We stand strong for them even when inside, every part of us is crumbling. If someone breathed in our direction, we felt like we may topple over and break into a million pieces yet every day we got out of bed, went to the hospital and fought every battle that day with our little ones. A preemie parent meets many superheroes along their journey, from their little superhero fighter to nurses, doctors, respiratory therapists, etc but know that every time you met one of those superheroes, they also met a superhero in you!!! Whatever stage in the journey you are, if you're still carrying your soon-to-be-preemie inside you or in the Nicu, recently out or if your preemie is 30 years old, you are a hero and you're amazing! I hope you are blessed today and have a wonderful parents of preemies day!!!

www.facebook.com/jaxonjeremiahwetzel

Long Time, No Posts

WOW! I can't believe it's been 3 months since I last wrote on here. We have had a LOT going on. I keep up with almost everything on Jaxon's Facebook page ( Jaxon's Journey ) so I forget to come on here anymore. I'm not going to go into everything too much because I'm pretty sure all my family and friends pretty much just keep up on our Facebook page now but I will just say that our March of Dimes walk went AMAZING!!! Here is a video from it of our family sharing our story and why we walk. Just click HERE to see the video.

Here are some photos from the day

Our family getting ready to share our story

Here we are with our team getting ready to walk

It was a lot of fun and I really encourage everyone to find their local walk and get involved. It's free and very little obligation but makes a HUGE difference for preemie babies everywhere.

Ok, so that is the end of my pitch ;)

I really don't have much to share as of right now but here is an Easter picture from the other day.

We had a wonderful holiday. For a very brief update on Jaxon, since my last posts about him, we have found he has some hearing loss in his right ear due to an extremely narrow canal as well as a misshapen canal and a tumor in the canal. His left ear is also narrow but not as bad as the right. His Chronic Lung Disease seems to be improving. He has not had any major issues with his breathing in a few months so that is AMAZING! He has been sick for a little over 2 weeks though. He's doing fine, just upset tummy that hopefully is about better now. He also is most likely having some seizures but based on my research, they don't seem to be harmful or severe. We will hopefully find out more specifics at his neurology appointment in a couple weeks. He has his developmental evaluation also in a couple weeks. He will be 17 months old next week. He is currently sitting, crawling, clapping and possibly saying "ball". When we give him his ball, about half the time he will say "BA-BA-BA" so we are pretty sure we finally got his first word!!! He also can cruise the furniture pretty well. He does not stand or walk yet so those are the things we are focusing on helping him with for now. He does not say any other words either. He will sometimes copy a simple sound if we try to get him to---like if we say "da-da-da-da", then about 25% of the time we can get him to say it too but he still can not make an "m" sound or any of the more complicated sounds like that. Only "d" and "b" really. Slowly but surely though, he is getting there. And with the hearing loss in addition to his prematurity, we don't expect him to be there yet anyways. My primary concern is his health and as far as that goes, he is a big healthy boy! He now weighs 20lb 12oz. Not sure where this puts him on the scale but I think it is around the 2 percentile as before. 

These photos are all from a wedding they were in last week

As far as the other 3 kids, the twins are doing wonderful! Aubree can spell her name and has turned out to be quite a talented little artist. She loves to draw these flowers that are just BEAUTIFUL! The first time she showed me, I just stared at it then showed Donny when he got home from work and he couldn't believe it! Coloring and drawing and any kind of craft that involves either is her favorite thing to do. I got her a professional sketchpad to draw on and her own set of markers, colors and paints. We will see how she develops this interest. Nicholas is still as fascinated with planetary science as ever. He is also obsessed with angry birds and star wars. The way he grasps information just amazes me. Things about the planets that we haven't talked about in many months and he will randomly start talking about it and remember even small little details. I will have plenty of use for that memory in years to come! Annabelle will be 4 in August but she thinks she is the twins' age. (Well, until she sees Jaxon being babied, then she thinks she is HIS age.) She thinks she will be starting school in August and she is very excited about that! I keep telling her that she won't go until next year but it's not really registering with her. I work with the twins on spelling their names and she tries too but she's just not quite there.....well, that AND her name is a BAJILLION letters long! ugh! what were we thinking spelling it out the very longest way possible!? oy! In my next life, I will name them names like Joe or Max or Lee. Short and simple.

Well, Jaxon is crawling all over me so I can't really type now so gonna go! 

<3 Me

March of Dimes Fundraising

So, I am new to the world of fundraising and it is actually quite overwhelming! BUT, because it is a cause I ABSOLUTELY believe in and am ridiculously passionate about, I press on! So, we are doing it a few different ways and hope you will read on and consider supporting our cause.

If you have already read through previous posts, then you already understand the significance of the March of Dimes mission for our family but if not, please read the posts under the "pprom/nicu" tab above. You don't have to read through them all but a post or 2 will give you an idea of what we have been through with our youngest child, Jaxon. He was born 3 months premature and has been through A LOT his first year. Look at this handsome face for a minute and let him play on your heart strings a bit before you continue on:

..........it's okay, you can keep looking at him another minute before you read on, I know you really want to! Who can resist?? I know I can't!

......okay, now if I can get your attention back this way again. I promise I'll post another in a minute so you can get some more of that yummy goodness! Okay, so he is now 13 1/2 months old and is still going through a lot because of his prematurity. The March of Dimes mission is to raise awareness and funds to support research, education and resources to help prevent prematurity and birth defects. They are an amazing organization reponsible for the lives of millions of babies, too many to ever even really know. I have 3 preemies myself who would most likely not be alive today without the March of Dimes, my Jaxon most definitely would not be. (and can you IMAGINE a world without that face?-----did you just look back up at the picture again? I knew you did because I had to as well) Anyways, (FOCUS) :) we are the ambassador family for our local March of Dimes chapter and I am totally dedicated to doing everything I can to help spread this March of Dimes mission to as many people as I can!! I am getting good at the awareness part of things. I mean, I doubt if there is anyone who has been near my zones (Facebook, my blog, my pinterest...me personally...) who doesn't know my passion for the mission of the March of Dimes. I am now working on the fundraising part. Awareness is HUGE! But without the financial backing for research, medical equipment, education materials, etc, then nothing can get off the ground. Did you know that a baby on a ventilator costs a little over $300 A DAY??? All three of my preemies were on a ventilator. Jaxon was on one for EIGHT WEEKS! I know a few babies who were or have been on them for 2 years and more! March of Dimes works to keep expensive but necessary equipment like this in NICUs. Did you know that over 40,000 babies in the US are born each year with a congenital heart defect? The March of Dimes works to support research for congenital defects/diseases like this as well as helping to provide educational materials for not only the medical staff that works with these babies but also the parents so they can learn more and be a part of their child's care team! These are only a few of MANY MANY examples of the great things the March of Dimes does. These things cost money and that's what I want to try and help with but I need the support of compassionate people who are willing to take the time to consider that these children's lives are worth more than their Starbucks run today. I'm not going to ask anyone to empty their bank account. I understand that everyone has needs and things in their lives that are very important so not everyone can give all they have to every good cause. But I am asking if you would just consider clicking on the link I am going to list below and just donating a dollar. Just a single dollar. You probably have more than that laying around your house you can deposit on your next trip to the bank to cover it. :) If you want to give more then (of course) I won't stop you but really, just a dollar is enough. Because if everyone who visits this page or our Facebook page donates $1, then I can raise enough to meet our BIG GOAL by April 12th, the day of our walk. Okay, so...here are the ways we are raising the money. (do you wanna see another ADORABLE photo first? ---I already had it inserted here so figured I'll keep it as a nice little break to divide this post up a bit and add some color...pretty BLUE color! LOOK at those EYES! WOW!)

Okay, so here are the different fundraisers:

1- You can just make a donation straight to our March of Dimes team fundraiser. Here is the link and all your donations go straight to March of Dimes and are tax deductible and ALSO are added to our teams goal :) ----- http://www.marchforbabies.org/personal_page.asp?pp=4576339&ct=4&w=6358311&u=DestinyCiera

2- You can purchase a Jeremiah 1:5 tshirt or hoody at the following link. These start at $12 each and are purchased straight from this page which runs fundraisers. Once all shirt orders are purchased, processed and delivered, they will donate all profits directly to the March of Dimes for us. They will ship your shirt directly to you. I LOVE these shirts. I like that they apply to ALL preemies. While we were deciding what to put on them, we considered "Team Jaxon" or "Jaxon's Journey" (since that's been the name of his Facebook page) but we opted against that because we wanted something that represents ALL babies. Our cause isn't JUST about Jaxon, it's about ALL babies, even those yet to be born. Our mission is to PREVENT premature birth for every baby possible so I like that these shirts represent that mission. Anyways, here is the link to order. They make great gifts as well. There are several different styles you can choose from: http://teespring.com/jaxonsjourney


3- You can purchase silicone bracelets by messaging us on Jaxon's Facebook page. We have multiple color bracelets including purple for prematurity and black, gray and blue. They each say "Team Jaxon" on them and we are selling them for $2 each. You can order them by messaging us and letting us know the color you would like and how many. The link to Jaxon's page is: www.facebook.com/jaxonjeremiahwetzel

Alright, so, for now these are the fundraisers we have going on and as I said before, 100% of the money we raise will go towards our March of Dimes walk! We will never ask or expect even a penny for ourselves or our family, not even for his medical expenses. It is much better to put it to where it can help MANY babies and families who need it much more than we do so we really hope and pray that you will consider helping us with this mission through one of these different ways. Thank you so much for taking the time to read through this. If you have any questions you can always email, message, facebook me or comment below. Please pin this post to help spread it as well and share it with family and friends! The more people we are exposed to, the more chances we will have of reaching our goals. Everyone or someone they know has been directly affected by the March of Dimes so this is not some random organization out there helping some unknown mysterious "they"s, it is a very personal and present organization, active and doing work all around us with people all around us. I hope none of you ever has to experience what our family has been through, but at the same time, I hope and pray that it doesn't just take going through it for people to realize how significant this organization is to us ALL!

Blessings!
Destiny

Another Year Gone...

Just saw how far behind I am getting on my posts. Really haven't mentioned any of the MANY things going on around here in a while. I am working on a lot of things for the March of Dimes. Not sure if I mentioned previously, but because of our experience with prematurity and NICU babies as well as my passion to help families going through the things we have been through, we were asked to be the ambassador family for our March of Dimes High Desert chapter. I was so excited and anxious to get started doing anything and everything I can to raise awareness as well as directly helping anyone who needs help as they navigate the world of prematurity and NICU and all other things that we work with through the March of Dimes.

(~~~Here's my brief MoD pitch~~~~ I am going to put a link on my blog to their website as soon as I get the time to work on my blog layout. I am currently working to raise funds for this year's March 4 Babies campaign. Our march is on April 12th so if anyone is in the High Desert of southern California area or can be and would like to walk with us, I will post the link at the bottom of this post so you can register to walk with us. It's totally free to participate and you do not have to make any donations, but if you would like to, you can also do so through the same link. All donations are tax deductible and we would appreciate every dollar you would be willing to donate. You can also share this link with family, friends or businesses to donate as well! Ok......so I will end the March of Dimes stuff there :)~~~)

The twins will be starting school this fall and even though it is still 7 months away, I am getting so anxious and nervous about it. They have never been with anyone but family for even a minute so I'm kinda freaking out about the whole idea but...I guess it's a bridge everyone has to cross at some point, unless you homeschool I guess, but that is not a practical option for us right now so across that bridge we shall go! It is kinda fun shopping for their school supplies. Yes, we are already stocking up on them 7 months early but only because I wanna make sure the stores don't sell out of what they want...like the Angry Birds back pack and lunch box Nicholas HAS to have! Or the My Little Pony one that Aubree won't be happy without! Purple pencil boxes will NOT do, it MUST be the pink one and I can't risk them selling out and her not having the pink one her very first year of school! Luckily, the school we will put them in has uniforms so I don't have to be too worried about a different outfit every day for a month (whew!) but I do have to get started on making all the fabulous hair bows and scarves to dress up that bland ole uniform and help her to stand out. Not that she really even needs my help, after all, she IS the darn'd cutest little 5 year old in the world! ;) But you know, gotta get started off on the right foot. Nicholas will bust through the doors and make his own first impression because that boy is a big personality nut! But my Aubree is much quieter and shy at first. ah! Thank You Jesus for making them twins because the best thing to help ease my mind is knowing that they will be in this together. He can look after her and she can take care of him. Not that I won't cry probably every day for the first year, but I will know that they are at least together if they are not with me.

Okay, so that is the twins' update, Annabelle really doesn't have much of an update beyond the fact that she is just more adorable every day! Still gives people the stink eye if they even glance her direction, still judgmental as ever :) but also still the sweetest, kissiest and cuddliest little girl ever! Oh! Actually, there is a little update. She now is an allergy kid! haha! like I am excited about that or something???? :) She's highly allergic to a lot of things so now has an inhaler and meds to take along everywhere we go. Anyone who has experience with this, please feel free to comment or email me with any ideas or the best advice for this situation as I am very new to it. :( The saddest part is that she is my ONLY child who absolutely LOVES cats and dogs, and she is the ONLY one who is deathly allergic to them. Cruel irony right? But it does give us an easy excuse not to get a pet even when she begs for one. It's so adorable too when we are at costco walking around and people are offering food samples, she's already learned that she can't eat a lot of things so while she used to always ask for a bite of the samples, now she sees a sample and says, "mommy, am I 'lergic to that?". It's sad that she has to ask that first but it is also so addictingly adorable to hear her say it! :)

Now, for the big update, the Man of Steel himself, Jaxon! I started calling him the man of steel because with his home therapy we had been working on teaching him to sit up. A baby is supposed to put their weight on their side and push up from their arm to sit but he was doing it wrong. He was laying flat and used his stomach muscles to pull himself straight up like an ab crunch. Of course, he can't do it fully but he would get so close that me and his teacher joked he has abs of steel and that ended up translating into him being the Man of Steel, but it fits. So now I am all about superman stuff for him (which was good because with the movie just coming out last year, there are lots of superman products now) Ok, ok, so for the real updates. :) So, I see October was my last post so I am going to assume I have updated up until that point. Well, his motor development finally started catching up! He is now developmentally caught up to his ADJUSTED age. (which means, he is 13 months old, but since he was 3 months early, he is 10 months old ADJUSTED, so with his motor skills developmentally, he is at a 10 month level). This is great as he was previously further behind than that! He started rolling just before his first birthday and he started sitting up shortly after he turned 13 months (like a week ago). He still does not crawl or stand but we are working on that. Crawling mostly as it is more important than standing for now.

The big thing we are more focused on though is his speech. I know, I know, you want to say "he's only 13 months so speech doesn't matter" but please don't say those comments. In the nicest way possible, I just want to let everyone know that it is actually rude and a bit offensive to tell any mother what she should or should not be concerned about. The mother is the one directly involved in every step of the process and getting the full scope of information about her own baby's situation and although she may share information with you, I GUARANTEE she has not told you every single piece of information. If she feels there is a need for concern or for intervention for her baby, then she is the one who knows better than ANYONE else! Even more than the doctors. Jaxon's doctors have always told me, "you will know before anyone (even doctors and therapists) if there is a concern because you are ALWAYS with him while we are only with him once a week/month/etc".  I know people may say things like that because they want to ease a concerned mother's mind, but let me tell you, it has never once eased my mind hearing people tell me something that goes against what the doctors, therapists or I think. It has only made me irritated that the person would not understand the fullness of our situation but assume they do. So please, if a mother ever shares a concern with you about her child, just support her concerns and her decision to do whatever she feels she needs to do about it. If she asks you your opinion, then you can answer honestly, but if she is only telling you stuff they are working on, do not offer your advise or comments. Just support her by telling her that you will pray for the little one or even just say "oh ok". Ok, so that was a side note I wanted to make before telling you where Jaxon is with everything.

Ok, so Jaxon! So, a few months ago I noticed his speech was not really developing even like the other preemies in his exact same situation so I mentioned it to his early interventions (EI) teacher so she did a standardized test on him and he scored at a 4 month old level for expressive and receptive language. (to clarify since everyone always wants to make it like it's ridiculous a 10 month old should have speech issues, babies are supposed to start babbling at 4 months old. I get that they all do things in their own time so don't always follow milestone charts, however, the milestone charts are THERE because they are the standard to get an idea when there is a possible issue with something. Just because the baby doesn't follow the standard doesn't mean there is an issue, but it IS a good reference when an issue is suspected) Anyways, he was 10 months old at the time, 7 adjusted, so I mentioned his results to his AMAZING pediatrician so she referred him to speech pathology. The pathologist did another test on him and he scored at a 2 month old level but she said it could be a range score (like 2-4 months) and that was why it was a different level scoring. But it at least showed us that consistently with 2 different testers at 2 different times, he was showing a "significant delay" in his speech. It was severe enough that she decided to refer him to speech therapy as well as audiology. (it's VERY rare to get the referral to do speech therapy before 2 years of age but she thought it was severe enough to start immediately so in a way I was nervous about that but in another way, very excited because I am a STRONG believer in early interventions) Anyways, so speech therapy is now every week and he is a month in and still is not saying any more sounds than he was but he has gotten more vocal (makes sounds more frequently). His therapist said in her 12 years of practice, he is by FAR the youngest she has ever worked with. He also saw an audiologist and found he has low frequency hearing loss but after several appointments (the last one being today) with ENT and audiology, we still have no definite conclusions, but this is the solution they are leaning towards. He definitely has ear canal stenosis which means he has a very narrow ear canal. His left is very narrow but his right is so narrow, she said she has only seen ONE that narrow before ever. It is also misshapen. It was so narrow she had to use the special microscopic otoscope to even see in it and she STILL was unable to see the eardrum. We KNOW that his eardrum has an abnormal rhythm and they initially thought he had fluid but now they are not sure. Because she's unable to view the eardrum, she cannot say for sure but even his tympanogram (ear drum test) was not definitive on that.  His left ear, she did not see any fluid so she thinks based on that the right ear would not either, however, BOTH ears showed abnormal eardrum movement but no pressure so they don't really know what's causing the abnormal movement but there is really nothing else they can do for now so it is just waiting. We basically are nowhere on those results but at the same time, we did get SOME information. Because of his abnormal ear canal, it is possible his hearing loss is actually because the sound waves are unable to travel properly through the canal and some sounds are lost. If this is the case, then his hearing is not technically a "loss" because it just fluctuates. (meaning it's randomized. If a jumble of sounds goes in, only a random assortment of them will actually be heard) Hopefully it will get bigger as he grows but she said that's not always the case so she will continue watching him. She said some adults have ear canals the size of a newborn infant because they grow for some people but some people they don't. Nothing really indicates whether his will or not so only time will tell. If it does not get bigger, then there is a possibility she may have to surgically open it up but if she does, she would not even consider that until he's closer to 5-6 years old. ALSO, he has a cyst in his ear canal. She is not immediately concerned about it. There are three things that would make her concerned. 1- it fully closes up the ear canal, 2- it grows, 3-it does not go away. She said it does not fully close the canal right now so we can scratch that off the list so she will just watch it to be sure it does not grow and also that it hopefully will just go away on it's own. I asked how long before she wants it to go away but she said it just depends. Hopefully by his second birthday but if not and it still has't grown, she would probably give it another year as long as it does not grow.

So, beyond the hearing/speech stuff, he is doing amazingly well!! His oxygen has been amazing for 3 months without assistance now and he has had no more problems with his muscle tension. Can't believe he is over a year old already! It's nuts to think how fast his first year flew by!!

So......that is kinda everything going on around here. (in a lot of detail too) :) hope everyone had a wonderful Thanksgiving, Christmas and New Year!!! I am going to put together a list of items every NICU parent needs because lately I have had several friends with nicu babies or friends with nicu babies and they ask me and other nicu moms what are good things to have so I thought I would make a post of some things so I can just direct them to here. If you had a baby in the nicu, what were some things that you would say are "must haves"??? You can email or comment with your answers. Thanks and have a blessed day!!!

Oh! and here is the March of Dimes link to join our team for the walk OR to donate!!
http://www.marchforbabies.org/personal_page.asp?pp=4576339&ct=4&w=6358311&u=DestinyCiera


To check out any previous updates, you can check out previous posts OR for weekly updates, you can visit Jaxon's Facebook page: www.facebook.com/jaxonjeremiahwetzel

It's Okay to Grieve

I'm cleaning up my blog to start some new things and I came across this post that I never published before. It was just sitting in my drafts and when I read through it, I knew I had to publish it. It is left unfinished at the bottom but perhaps it can just be a thought provoker rather than some enlightening answer to all of life's questions. I didn't want it to remain a draft but I also don't feel the need to disturb it either so here it is undisturbed and unfinished but contained in it is a lot of truth I think a lot of people need to hear.

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Previous posts share specific details about different aspects of our journey with Jaxon. I've noticed when people want to know about our journey, they typically want to know 3 specific things. 

1. What went wrong in the pregnancy? 

2. What was his Nicu journey like?? 

3. How is he now? (Of course, most people are only asking this because they want me to say "perfect!" Rather than truly telling them about any hurdles he has remaining. But that's a different post for a different day) ☺️

I've shared the most details on his Nicu journey previously and a little bit about the pregnancy and here and there on how he is doing now. I noticed though that I have never shared what I feel is the most important thing to learn from our journey. It's not medical knowledge, it's not about overcoming adversity or even miracles or even EVEN the power of prayer! The most significant thing I've learned from our journey is that God is good! He is good in EVERYTHING! Not because we are blessed to have a survivor. Even if jaxon did not survive, God is good! He is always good! Part of that is seeing the thread He so intricately wove through every part of our journey. That thread that in some parts is only barely visible but still very much there. He IS that thread and He holds all the other threads of our life-tapestry together. Everything is connected. So you don't have to go searching through previous posts to learn our backstory first, I will link them first. Click on the links to learn about what we have lived through with our youngest son- the pregnancy and his birth and health crisis. If you have already followed his journey, you can skip the stories and continue below:

PREGNANCY

BIRTH

NICU

Miracles happen! They happened to us! As crazy as it sounds, I feel so blessed to have gone through all we went through with my little man bc without all of it, we wouldn't be the strong family we are today. I would never have seen how strong and mighty my little (once 2lb 6oz) Miracle is and how great my awesome and powerful and good God is!!! We are so blessed to be on the "survivor" side of the tally sheet but we are not blinded to the fact that too many of these warriors are on the other side of that sheet. We remember our angel buddies daily and pray for their families living out their lives without their precious miracles in their arms. I don't understand why some survive and others don't when they are all so precious and so deserving of a long healthy life. I know in the end God has a purpose in everything He does and His purposes are for our good and not our destruction. These words don't fix a grieving heart when we can see so much good in a different and easier outcome, but the truth of them is what pulls us through. It's a truth that we don't want to face when the situation is too difficult, but it is also so deeply imbedded in our hearts that we don't HAVE to "face" it just like we don't HAVE to acknowledge daily that the sky is blue. It just is and it's the only reality we know.  Sometimes we fight things not because we are trying to battle against God, but because we can't NOT fight and He is the One who is there in every part of our situation. Like the best friend you vent all your frustrations to. They take it because they care and they understand your need to vent. God is there and understands that although these things are ultimately for good, they are still hard for us. He is the best friend who is there for us to vent to. I love that in my most intense time when we (including doctors) didn't think Jaxon would survive, I cried out to Him and He didn't say "he's gonna be fine! I just know it!" Or, "just have faith!" Or "God is in control" or any of the things people say with good intention but not realizing it's really not the right thing to say. Instead, He remained quiet. He knew I knew all those things, I didn't need reminding. I needed to grieve. Grieving is a psychological process that helps us to cope. It's a necessary process, it's healthy.