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.