Jaxton Oliver Mark Husmann {rest in peace my best boy}

I am truly heartbroken and at a loss for words. My heart is certainly aching like never before. Our precious Jaxton is now with Jesus. I don’t have a lot to say as I am still processing my son no longer being here with us.

We’d like every one to know how appreciative we are to have had the prayers and fasting for Jaxton’s healing.

The funeral will be held this Saturday, March 12th at 11am. The visitation will be at 10am at Randall and Roberts in Fishers / 12010 Allisonville Road, Fishers, IN 46038

We know Jaxton has touched a lot of peoples lives and the visitation and funeral are open to all who would like to attend.

14 days!

Family of 4.

Last bath.

Josh praying for Jaxton.

Scrapbook pages made by Grandma’s, nurses Wendy & Shari and friend Shana.

Last cuddles.

At 7:35pm (his birth time) on Wednesday March 9th we pulled the ventilator tube to have Jaxton breath on his own. Unfortunately, exactly 30 minutes later his heart had it’s last beat.

Saturday 4:30am {Pee, Poop & other fun stuff}

Hi!

So many things have been going on here!!!

Jaxton’s ph level is now 7.32   🙂 ideal is 7.4 which is an excellent change from his original 7.02 ph!

They  adjusted his ventalator and he is handeling the change well according to the respatory therapist. He originally was on 100% oxygen and now he is at 85%. I think they are trying to get him to room axygen which is like 25% (don’t quote me on that… there are to many numbers around here to remember them all)

Earlier today the doctor was concerned about how little he was peeing and then he surprised us all and has peed off the charts good! He only needs 2 oz minimum an hour and he has consistantly done 23 oz in 3 hours!

Crystal his nurse JUST told me that he has been absorbing ALL 6 ml of the colostrom which he had trouble doing with the formula. I’m sooooo thrilled!!! I have been producing twice as much as he needs at this point which everyone is so surprised considering the lack of sleep, emotional stress and having gone through the pain of a surgery. He just makes me soooo happy I think my body wants to reward him any way I can.

I have been loving and flirting with him this whole time. Kissing every sweet little part of him and whispering prayers and I love you’s. He has been tugging at my heart strings and making me fall more and more in love with him! He decided to flirt back with me and opened his eyes about 6 times and has been holding my finger.

I am loving towel bathing him, giving massages and lotion rub downs. He loves his feet and legs rubbed. He is responding to our touch which makes us smile!

I have decided that there is nothing better than seeing my hubby kiss, love and hold our sons. I have fallen even more in love with Josh just being so in love with our boys.

Jake was able to visit today and I loved seeing him running around and being his fun self. He was being so funny it was almost too painful to be around because it was making my incision hurt every time I laughed. I think he is starting to hint at wanting to be potty trained. Apparently he has been taking off his diaper A LOT and even went pee in the potty once on his own! (Big thanks to the Niccum family for putting up with the diaper situation! sorry you had the luxury of dealing with that.)

My heart is so full right now for Josh, Jake and Jaxton but for you all, the nursing staff and especially my friends and family. I’d like to work on a post here soon about how much you all have touched my life! It may take me a while to write because I have soooo much to say.

Right now Daddy is holding Big Jax and I’m due for a nap!

I am so thankful to God, Jaxton’s creator, for his tenderness and mercy with our family. He has been blessing us abundantly in so many ways. I’m almost moved to tears at how he has been so gentle with our hearts and answering prayers and questions right away. We have been able to pray over Jaxton and read scripture to him reminding him of how great and wonderful the LORD is! Father God… I LOVE YOU SO MUCH!

We could use prayer for the decisions about his nutrition intake, breathing on his own, NO Trisomy in his DNA and extra prayers for his heart!

Dear Jaxton… {We get to meet you tomorrow}

Dear Jaxton,

The time we have been waiting for will finally be here tomorrow. Words can not express how excited I am to see you, meet you, hold you, love you. I am so proud of you already. For just your existence has changed the world. What a legacy to start your life with! We have been praying for you since before you were conceived and as we continue to pray for you, I want you to remember all the things I have already told you, but especially this: You are in the hands of an Almighty God who loves you even more than I ever could and I am so in love with you.

I have been pretty calm up to this point. We are just waiting to see what God does. I am most anxious seeing your beautiful face then you will be whisked away from me for about 2 hours. I am terribly saddened by this, but your awesome daddy will be with you every moment. He will be loving on you with his whole heart. I will be eagerly be waiting to have you back with me. Just in case you didn’t know, your daddy has been to almost every single appointment you have had. He loves you so much that he would sacrifice just about anything for you. He has kept me strong this whole time and deserves a medal for best Hubby & Daddy!

I have been holding on to my faith even though it may be smaller than a mustard seed. This sunday’s message was perfect for reminding me about the miracles that God does and how he loves to give. Even though it is the day before we meet you and nothing has changed in your prognosis {even adding VSD/hole in heart last week} we still know God can work. It’s not about if I prayed the right words, how many times I prayed or fasted. I can’t hold these things over my head, but I know it will be a battle.

I will be so excited to rejoice like Hannah did:

“I prayed for this child, and the LORD has granted me what I asked of him.” – 1 Samuel 1:27

Packed and ready to go!

*  Interested in following the birth tomorrow? *

My friend Aimee Loeser will be updating the blog tomorrow with all the details.

We are scheduled for the c-section @ 4:00pm (Indiana time)

{Being Jaxton’s Dad} by Josh Husmann

Lisa asked me to make a guest post on her blog.  I feel honored.  I know thousands of you read her story from around the world.   She would like me to bare my soul for you on what it’s been like for me during the pregnancy and everything we’ve been through.  I’ll be honest, that’s not something I’m really comfortable doing.  She’s much more comfortable posting personal and emotional experiences online than I am, but this will be my attempt.

I’ll never forget sitting in the 4D ultrasound room and seeing the round mass protruding from Jaxton’s stomach.  We now know that is an Omphalocele and is the lack of an abdominal wall likely caused by Trisomy 13.  I was instantly in shock and had that dad sense that something was wrong.

I went home and Googled as much info as I could from what I saw in the picture, called doctor friends, and did my best to do a self-diagnosis.  I read somewhere that this could be a sign of a genetic chromosome disease and forced myself to warn Lisa before we went to the doctor.

Hearing from the doctor that it was our worst nightmare was an experience like few in life.  It was so surreal.  I sat there listening to the doctor trying to figure out how we were going to fix it.  But there is no human way of fixing it.  The likely problem was his DNA.  The doctors couldn’t change that.

This began the early stages of wrestling with faith and God’s healing.  I knew God could heal, but could I expect God to heal Jaxton.  I decided, yes I could, but what if I was wrong?  Well then I’d be devastated because I really knew God could and wanted to heal Jaxton. It led me to realize I did believe and expect that God was in fact going to heal our son.  Since coming to this conclusion I have rarely wavered.  Doubts and thoughts have definitely crept in, but there was never a lack of assurance that God was in control and that Jaxton would be healed.  The struggle was more of when, how, and to what extent would he be healed.

I think the most difficult part of this whole experience has been trying to understand how to console and talk with Lisa.  She has admittedly been a roller coaster of emotions since September.  The pregnancy experience is never the same for the husband in “normal” circumstances, but in this case it’s often been extremely hard for me to relate to what Lisa’s been going through.  Our first son, Jake, was never that real to me until he was born.  He wasn’t living in my stomach.  When I picked up Jake for the first time I was like, “Man, this is real….and I’m supposed to take care of him?”

Jaxton has become more real because of the abundance of ultrasounds and doctors meetings, but it still isn’t the same as what Lisa has experienced. It honestly leaves me frustrated at times.  It’s obviously heartless to expect Lisa not to be emotional, but at times I haven’t fully grasped what she’s experiencing.  To me, we know what the doctors have said and we know the God we serve.  No amount of crying or anger or depression is going to change Jaxton, only God will.  Acting like he’s dead when he’s alive doesn’t make sense.  Worrying about what “might” happen seems pointless.  I mean I’m not a robot, but I definitely see no point in panicking about things that are completely out of our control.

If there’s one thing I’ve learned from this experience, it’s that sometimes in life the best thing we can do is give up control. (I posted about this last week on my blog)  Especially, when the only solution is God.  We spend so much of our lives WASTING our time trying to control and manipulate our lives and our family’s life, instead of putting ourselves in places where God can most use us.  Between starting a new church and having a sick son I’ve finally just said, “Here you go God…all Yours.”  It’s been amazing how freeing that is!   I’ve experienced God working more in the past 6 months than YEARS of my life previously.  I’ve also felt more at peace and fulfilled.

This past week we found out Jaxton has a hole in his heart (another sign of Trisomy 13).  We’ve prayed and fasted and nothing has changed, yet my resolve that God is real and is doing a miracle healing in Jaxton’s life hasn’t changed either.  It seems like every time we go to the doctor or hospital it’s more bad news.  It really could be extremely discouraging and it no doubt makes me question, but I can say with certainty I gave COMPLETE control to God and I can’t wait to hold my healed and healthy son soon!

– Josh Husmann

God, There’s not much more I can take

Hello VANDERBUILT UNIVERSITY MEDICAL CENTER in Nashville, Tennessee! 🙂 I’ve been told that the doctors and nurses at this medical office check my blog. What pressure it is when I actually think beyond just me typing what goes on in my brain to what other people think.

Let me tell you about our day on Friday… I had scheduled a routine 2 year appointment for Jake for 10 am. He woke up at 9:20 so I got him ready and rushed out the door. I packed him cheerios to eat, but didn’t think much about it because he wasn’t asking for it. (but then again Jakes eating has totally gone down the drain!) So we walk in and the nurse starts taking his measurements. Weight= 21 lbs, Height= 32″. His Doctor came in and showed some concern because Jake is the same weight as he was 5 months ago AND instead of being in the 75%-90% height he is now in the 10%! He started asking questions about his eating habits so I divulged the info that he hardly eats anything. He won’t eat pizza, hamburgers, mac n cheese or any thing a normal kid will eat. So the doctor ordered his hemoglobin levels to be tested and his blood sugar. His blood sugar was at 52 instead of the “normal range of 70-105. I had reminded him about Jake being sick that week and not eating yet and he said even so it was out of range for fasting levels.

He was VERY concerned and even mentioned many possibilities one being Leukemia. So I cling to that word and start crying.

I tell the doctor about Jaxton having trisomy 13 and hearing this news was just TOO MUCH. He felt horrible, but had scheduled for us to have Jake go immediately to the Hospital for overnight tests and observation.

Just when I thought I couldn’t be brought any lower I get hit with this. Not only am I told I WILL loose my baby , but now I am imagining Jake in NICU with chemo and tubes and in seclusion. I start to cry and so does Jake as he is whimpering Mommy? Mommy? I hold him and tell him everything is alright, you are fine honey, I love you baby so much. I hug him and don’t let go as he is clinging to me as well.  The doctor tenderly hugs us and wishes his best for us and says he trusts in God.

We leave the Doctor and with all the strength left in me I strap jake into the car seat, get in the car and start balling my eyes out.  I cry out “God, there is not much more I can take!”

Then this pops into my head:

I put this up about a week ago as a constant reminder of our family and our Faith in the Lord and now at a moment such as this it served it’s purpose to bring me back to my center.

So we check Jake in and he has to give LOTS of blood for all the tests and an x-ray. He is such a trooper! He did amazing and we are so proud of him!!!

All this said we later learn 8 hours later that He is actually 4″ taller @ 36″ AND his chart was mis-graphed! So it turns out JAKE IS FINE AND HEALTHY!!! It was all just a huge mistake so we got to go home early. I am so thankful that Jake is alright! We got some great advice from a dietician, but nothing I couldn’t have googled on my own. Yes Jake is super skinny and we are trying to get more calories in him!  🙂

I’m happy to know that even feeling like I was dying inside I turned to my Savior!

{36 weeks}

It’s amazing how far I have come in my journey. At one time: a day wouldn’t go by with out rivers of tears pouring from my eyes, going to bed with massive migraines, being addicted to Google and sad youtube videos. I couldn’t even hear the song “You Give and Take Away” without being upset, conflicted and honestly a bit angry.

The day before we got Jaxton’s prognosis I had been telling my mom about how I had been planning out a NATURAL child birthing experience this time. Quite opposite to the last time with Jake. My doctor only delivered on Tuesday or Thursday so if I wanted the doctor who had seen me the last 8 months to deliver I had to induce. I wish I knew then what I know NOW! Not only was it traumatic for my poor little Jake but I was close not being able to have kids ever again and close to dying because of all the blood loss. (TMI)  So my plan was: NO inducing, NO Pitocin, NO epidural. I wanted Waterbirth and relaxing Hypnosis with a doula. (yes- i’m a hippie at heart)

{I recommend the documentary Business of Being Born. or you can watch clips on youtube.}

Fast forward 8 weeks: Now I am full of praise and so full of hope and faith.

Ever since my 10/10 moment life has been so AMAZING! I have completely had a heart change and let me tell you, the effort it takes to be sad and upset is a lot more than the effort it takes to trust God and share your burdens with him. I’m so thankful for my dear friend Marsha who lovingly reminds me “…..truly, you must surrender this and put it ALL in God’s hands….That means every aspect of it, from the method of delivery to the outcome with Jaxton….e.v.e.r.y. d.e.t.a.i.l…….”

I have never been closer to God or more drawn to his scripture. I have just finished 1 Samuel. Wow- what a great book! Along with that I have been reading all the scriptures you all have been sending me as well! I love it! Marking up my bible has never been so fun! I’m also reading Sun Stand Still which I highly recommend!

^{{1 Samuel 5} “1} After the Philistines had captured the ark of God, they took it from Ebenezer to Ashdod. ² Then they carried the ark into Dagon’s temple and set it beside Dagon. ³ When the people of Ashdod rose early the next day, there was Dagon, fallen on his face on the ground before the ark of the LORD! They took Dagon and put him back in his place. ⁴ But the following morning when they rose, there was Dagon, fallen on his face on the ground before the ark of the LORD! His head and hands had been broken off and were lying on the threshold; only his body remained.”  Even false idols bow down to worship our God!

Jaxton has conviniently snuggled his way into my rib cage. Hope this doesn’t last for the next 5 weeks. I had to cancel this weeks appointment due to the icestorm last night. Our drive way is one huge ice cube along with the rest of the street – Literally * I’m not exaggerating! (Not quite ready for that driving adventure.)But I am planning on seeing my friend Amy at the 4D ultrasound next week so i’ll get another sneak peek of my little baby. I’m excited to see him but also to show you all his pictures!

Thank you everyone who has been on this journey with me and seeing my oh so obvious ups and downs. At this point I should probably have a roller coaster named after me.

Heard this song on sunday and it really touched me:

Blogs I have been enjoying reading:

Aimee Loeser

April Evans

Baby Be Blessed

Out of Ashes

31 weeks

You’re 31 weeks now. 8 more weeks to go. That’s only 56 days.

Every night since December 7th I have been sleeping with a blanket that I eventually plan on wrapping you in while in the hospital. I want my scent, my love and my hope around you always. You and I will have matching blankets. A special thanks to Terressa at Baby Beulah Boutique for making this for Jaxton and our family.

I never thought the Serenity Prayer would apply to me, but it does:

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would like it to be…
Amen.

–Reinhold Niebuhr

GOD IS GOOD!

Ok, so you are totally going to LOVE this story. If you have been following my blog for any length of time you know I have been up and down with God. Finally last week I gave it all to him which you can read in my last blog post.  Here is a picture of a Gift for Jaxton I got in the mail today. It is a beautiful hand knit blanket. But the most amazing part is not the blanket but that little blue snowflake!

Attached was a card where she wrote “The Lord placed it on my heart to add a little snowflake to the ribbon. Each person is an individual masterpiece. Each is a uniquely fleeting treasure with the fingerprints of God upon it.”

She had packaged this gift up the same day I posted my last blog about my personal snowflake story and mailed it the next morning!

So obviously I am dying inside that God spoke to me! Technically 3 times with snow 🙂

Little did she know when the Lord was prompting her that this was going to be an answer to my submission to God. I had finally let it all go and had given it to GOD.

Just thought this was super encouraging and too awesome to not share.

* My after thought *

12.12.10 – I woke up this morning after posting this last night and can not get over how God has been saying “YES Lisa, I am listening to you. I AM here with you.”

If you recall… the last time I asked…”God are you listening to me?” He replied with the first VERY unexpected snow of the season.

Thank you to so many of you who have followed our family in this journey from day one or just recently who have committed to praying for Jaxton, our family, our marriage, our church and everything else going on at this time. We are SO thankful when God responds and we want everyone to know that:

The Husmann’s give GOD all the Glory!

My 10/10 moment … 28 week Ultrasound!

10 weeks ago we found out about Jaxton’s conditions: Trisomy 13, Holoprosencephaly, Omphalocele, Single Artery Umbilical. It was a perfectly planned pregnancy up until that point.

10 weeks from now our lives will be completely changed forever. This is me purposefully  surrendering my heart, life and Jaxton for the next 10 weeks.

 

Lately I have been struggling with the balance between “believing in the supernatural while preparing for the natural.” – Thank you Jessica Whitmore for helping me find these perfect words! I feel privileged to have the knowledge of his circumstances and be able to have the time to find very special items for Jaxton’s funeral/burial if that is the chosen route for him, but also trying not to get consumed in it. I was tending to bend the balance towards the preparing side of the spectrum. I guess after the 8 week ultrasound where nothing changed I headed toward the negative side and just assumed this is just what is going to happen and gave up on God.

I was telling Josh my feelings about the disappointment of the last ultrasound with no change for the better and sadly these words came out of my mouth “I am so disappointed with God. He had 8 weeks to have helped him. I trusted him. HE HAD HIS CHANCE!” At this point I was thinking screw him! While venting and talking with Josh he was able to bring me out of a stooper that I had subsequently dug myself in. He simply said “He’s not dead yet.”…  That’s all it took. I thought about it and you know what… He’s right! HE IS STILL ALIVE!!!! 🙂  HUGE SMILE!

The other morning, my subtly shifting negative view was challenged when a teeny tiny snowflake landed on my black sweater. I could see it’s shape and form so clearly. Call me crazy but I had never “looked” at a snowflake before. ❄ ❄ ❄ Maybe because I’m a Southern California girl, but I honestly didn’t know that a snowflake really was like you see them on cards, ornaments and wrapping paper. It really was that unique and beautiful. Then I looked in my backyard and saw the 5″ deep snow that had just dumped down and now it just looked like one big blanket. No way to possibly see an individual flake, but yet God created that tiny little flake to be as gorgeous as can be. What a complex God we serve! I am so humbled. He does care about the small things. Even when we fail to notice how great he is, he still chooses to be wonderful in all his glory.

Look at a our beautiful little snowflake growing inside me!

Sleeping baby with Umbilical cord on his shoulder.His feet and the omphalocele.

Sucking his thumb with his eyes open.

Look at how much he has changed! This was his 18 week ultrasound:

I am ASKING God a BIG thing. Not big for him, but big for me.

On 12/7/10 We prayed, anointed and laid hands on our special child committing him to God.

This is my 10/10 moment…

God,

I come to you embarrassed about how I could so quickly point the finger at you and doubting you for not healing Jaxton in the time frame I gave you. I am ashamed to admit the little faith that I had after not seeing “proof” that you in fact do work miracles. It felt so much easier to just accept our fate and move on. I have known you for many years and you have always provided for me with so many things… even too many to list and yet so quickly I forget all that you have done for me in the past. I have come to my breaking point and want to turn back to you 100%. I mean with ALL my heart again like I used to.

This is my 10/10 moment and I give you this incredibly beautiful and special child growing with in me to do as you wish. I proudly know he has already been expanding and glorifying your Holy Name. What an honor it is to be his mother. He is your son as well as mine. I am simply going to state the situation and let you deal with it as you choose: Multiple doctors have told us that Jaxton has Trisomy 13 symptoms, Holoprosencephaly, Omphalocele and Single Artery Umbilical. I look at him and see perfection as do you. Jaxton is already a miracle! You know my heart. You have heard my prayers. He is your creation and he reflects your power.

So with 10 weeks to go… I hand it over to you. My palms are up to praise you and submit to you. My knees are bent to praise you and humble myself to you. My head is bowed to revere you and submit to you. These 10 weeks and the rest to come are forever yours.

 

A HUGE thanks to Castleton 4D we are able to go as many times as we want to see Jaxton. They are so gracious, kind and understanding with us in this time.

 

Jaxton is 27 weeks today! … SNOW!!!

Jaxton,

I know you are a special boy, but God wanted to celebrate your 27 weeks extra special… Your first SNOW!!!  That’s so awesome!

We are thinking about you all the time. Especially me. You are moving more now and I love being able to feel you and try to guess if it was an elbow, knee or a karate kick to my hips. Feeling you move gives me a sigh of relief. I am thankful for every movement and I sit and lay with you early in the morning and late at night. It’s our mommy and Jaxton time.

I have been praying a lot to God. Telling him your diagnosis, what this would mean for your life and asking him for your healing. I know he already knows this but he asks us to ASK him. I was reminded this the other day when talking to your daddy then when Jake put it into practical application for me. Jake was crying and laying by the refrigerator throwing a small protest. I knew he wanted milk, but I kept telling him “use your words please.” Then I remembered that that is exactly what God is asking of me: To use my words. I don’t believe in coincidences. Everything is in God’s hands. So what a nice surprise it was to see snow the morning after I used my words to God and asked him “Are you listening to me? Are you going to heal Jaxton?” … Then it was just silence. Never would I have thought that on your 27 week birthday he would have answered me “yes. I am listening.” in the form of SNOW!

Yes, we live in Indiana and there will be many days of snow, but today … IT WAS FOR YOU!    🙂

Jake shared in the celebration too…   🙂

It has been snowing all day and I have been looking outside in amazement. As I always say I know this is just a season we need to get through and soon it will be spring then summer. But right now it is winter. Literally and emotionally.

 

*** I have added a tab for all the Trisomy parents who visit this page. Hopefully I have been able to supply them with resources and encouragement. Please pass along any of the info if you know someone going through this. * Please let me know if there is any to add that you may know of!