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.

**********************************

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. 

What's in a name...

As we are at the 1-year mark for all of the pregnancy complications with my preemie, Jaxon, I have been spending a lot of time reflecting on that experience and how it has changed my life so I will probably be posting primarily about all of that. If you are new to my blog, you can read my previous posts to find out more about our little man by clicking on the PPROM/NICU tab above but for a brief general overview: Jaxon is our fourth child. He was born 13 weeks premature after my water broke at 19 weeks, I was admitted to the hospital at 23 weeks, 6 days and I had placenta abruption at 25 weeks as well as gestational diabetes and PUPPS and then at 27 weeks I developed sepsis and delivered him via emergency c section. He spent 3 months in the nicu and is now 10 1/2 months old. Ok, now that you know that, the rest of my post should make better sense o you. :)

(Jaxon with his daddy at about 2 weeks old)

(Jaxon at around 10 days old in between his 2nd and 3rd intubations)



When I first went into labor with Jaxon at 23 weeks, 6 days, we did not have a middle name for him. In fact, we had only a week or two before decided on his first name. As I layed in my hosptal bed trying to get some rest as the doctor ordered, I began to toss and turn because I was so worried about the possibilities, so I did what I always do when I'm going through anything. I began to write. We did not know earlier that day that I would be admitted to the hospital so I did not have any of my things with me, but I did have my phone. I opened up the Notes app on my phone and began typing away. I had my Bible app and began reading and just really searching and asking the Lord to show me the purpose of this situation. I didn't question His ways or intentions for the things I didn't understand and I didn't ask "why me?", but I did tell Him that I needed His peace to hold my hand. The only way to find that peace was to understand how purpose can be revealed in such a seemingly dark situation. He never does anything without a reason. I needed to know how to seek Him in my situation. I needed the strength to step out in faith and remember that I can trust Him in everything! I found that strength. Right there in my hospital bed, bed pan on the counter next to me, IVs in my arm, right there in that room I found Him holding on to me. I felt His arms around me squeezing me, I saw His tears falling every time Jaxon had a heart decell on the monitor. He took no pleasure in my pain and He never rolled His eyes at me as if to say, "just get over it. I always take care of you, don't you get it by now?" He never said that. He just allowed me to grieve my situation and to feel my fears. I know it sounds strange to think that God allowed me to feel my fear, but He did. It was what I needed at that moment. I needed to feel the fear. It wasn't the fear of not trusting Him or wanting something different for my life. It was the fear that comes with loving someone so much! I loved my Jaxon with a fierce and unconditional love and I loved my Lord, my Savior, my Healer even so much more! I was not willing to let go of my love and trust in the Lord but in that, I had to accept that I did not know His plans for my Jaxon and because of that, I had to accept that I may have to lose that other secondary yet still so powerful love, my son. It was a fear of going through something that far exceeded any trial I had ever endured and not knowing if I had the strength to endure it. It was the fear of knowing that I did NOT have that much strength and knowing that because I did not, I would be solely and fully dependent on the Lord's strength because it was the only infinite source of strength in the universe. The only strength that would not fail. When I woke up the next morning (or I think it was morning, I did not have a window so all my days and nights ran ogether at that time) I opened my Bible app once again and I intended to look up the exact words for the verse Jeremiah 29:11, however, I had a temporary mental block and was thinking it was chapter 1. That brought me to another verse that is also familiar, Jeremiah 1:5. I read through the first 5 verses of chapter 1 and when I got to the end of verse 5, my face was soaked with tears. (here is the link to the post I typed out on my phone at that moment: Jaxon Jeremiah Wetzel ) I stopped and texted my husband very simply "Jaxon Jeremiah" and he wrote back immediately, "YES! I like it!" And from that moment, he was Jaxon Jeremiah. I then continued reading through the rest of the chapter and the more I read, the more peace began to fill me. I still did not know how Jaxon's story would go and even thought there was a good possibility it might end soon, but even at that thought, I had such peace and just knew that I was ready for what was to come no matter what it was. I knew that if our miracle looked like what we hoped it would look like, then all would be well but I also knew that if it didn't, if the road the Lord would have us travel was not one we would have ever wanted or even considered, then He would be my strength and He would be my comfort. I knew I was ready to continue on and take each day as it came but also knowing that whatever the possibilities, I was ready to accept it with joy. I know that sounds so hard and almost impossible, but such is the greatness of my God! Nothing is impossible with Him! Not even a mother's peace and joy in the midst of an impossible trial. I remember several times every single day for my month in the hospital people would say that they can't believe how calm and at peace I was. Even the nurses would look at me as if they wanted to remind me what a dire situation we were in. And that's not to say I was blissful and laughing and as happy as the ending of a Christmas movie, that's not it at all. I cried every day. I struggled with other things every day such as pains and a horrible rash on top of devastating news seemingly every day, but inside I had such a joy and peace that even through the tears, I knew I was blessed every moment. And I wasn't just settling for the cliche "every day is a gift/blessing". No, not like that. I TRULY LEGITIMATELY felt BLESSED that the Lord looked down and saw me and my family and desired a deeper purpose in our lives so much that He broke my water prematurely. That is seriously the way I saw it and still see it. How amazing that the Creator of all things would even know me and then, beyond that even, to choose me for such a thing! That the world had never even seen Jaxon's face, yet the One who carved the mountains and sprinkled the universe with color. KNEW him! CALLED him! CHOSE him! WOW! Who can know His ways? I feel like all of creation is a tapestry and through this experience, we have found our threads in that tapestry! 

Me on my hospital bedrest

Jaxon at 9 months old at home

 Jaxon at about 7 months at home

Jaxon at 9 1/2 months at home