Posts Tagged ‘Trisomy 13’

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!

Thank You #823

Thank you Becky & April for being amazingly wonderful NICU nurses! I love you both. You inspire me beyond belief and keep up the great work! Your gentle spirits and kind hearts are what makes you so incredibly special. I adore you two!

This post  is in honor of my friends who are nurses in the NICU for CHOC hospital in O.C. California! I have had conversations with both of them and they said they didn’t know anyone personally that has gone through what we are going through so I thought i’d give them a little behind the scene tour of our journey before our precious baby get to a nurse like them.

Step 1- Talk about when to try to get pregnant

Step 2- Start taking prenatal vitamins

Step 3- Buy Ovulation Predictors

Step 4- Try to conceive

Step 5- Negative pregnancy test

Step 6-9 repeat steps 3-5

Steps 10-13- repeat steps 3-5

Steps 14-17- repeat steps 3-5 (sometimes this takes years!)

Step 18- *YAY* Positive pregnancy test!!!

Step 19- Hug, cry and talk about the future

Step 20- figure out baby’s birthday

Step 21- Tell Best Friend and Immediate family

Step 22- Tell a few more acquaintances because your too excited to hold it in

Step 23- 1st ultrasound to hear the heartbeat

Step 24- 12 weeks gestation – Announce the Baby to everyone and update FaceBook status along with 1st ultrasound picture  🙂

Step 25- Start thinking of a name

Step 26- 18 weeks gestation – 2nd Ultrasound… Find out gender… Something is not right with the baby. Maybe Down Syndrome.

Step 27- Panic, Tears, Hysteric balling, Forgetting how to breath and lots of begging to God.

Step 28- Long baths, rocking in the fetal position and waiting for next appointment

Step 29 – Another Ultrasound – Not Down Syndrome. even worse… Trisomy 13… Imminent death.

Step 30-42 Weakness, Desperation, Sadness, Panic, Tears and lots more Prayers/begging to God.

Step 43- Can only focus on the Word trisomy. It has become a staple in conversation

Step 44-89 Lots of Research/ Lots of questions and lots more Prayer

Step 90-107 Watching too many Youtube videos that make you breakdown and cry.

Step 108- 129 (20 weeks gestation) Rejoice for every kick & waiting for the next sign of life

Step 130- 144 (21 weeks gestation) Lots of talking to the baby, belly rubs, Jake kissing belly saying “Hi Brother”

* I don’t know these next steps because we aren’t there yet but I’d image more Desperation, Sadness, Panic, Tears and lots more Prayers/begging to God, but also Hope, Love, increased faith, Compassion, Joy and Peace!

Step #823 – YOU meet our baby for the first time in the NICU. From here on you will be the surrogate mothers. You are our representatives.  🙂   You are the most important person at this point in our baby’s life.


Here is my point… by the time our baby actually makes it to the NICU we have had a world of chaos.

We have had to go through sitting through multiple doctors telling us he won’t make it, there are other options for people in our situation, even IF he made it full term he wouldn’t live long – it’s really tough to hear. I actually have a hard time sitting through an ultrasound without crying because I feel like I am getting to know him better each time I see a foot or something. Then a heartbreaking reality that I may never KNOW this little boy that I am falling in love with is too much to keep in and I cry right in front of the technician and everyone. I don’t care what they think. It’s my personal time with my baby and they just happen to be in the room.

Please know when you are taking care of some of God’s most precious gifts that the parents may have been dreading the day of delivery and yet anticipating it so badly. Us Trisomy mothers know that the moment the baby leaves our womb his chances of dying sky-rocket! We may have only 10 minutes or 10 days (if we are lucky – The average is 2.5 days) We want so badly to meet them and hold them and not let them out of our arms, but even now months away from delivery I am preparing myself to rock my precious boy to death instead of to sleep. I may have to give him back. I have spent time researching and time crying long before you could ever imagine. It will be a long road for us just anticipating that he will make it full term. T13 parents don’t have the luxury of planning a baby shower or even decorating a nursery. Am I bringing an outfit to the hospital to take him home in or to bury him in? We instead have to plan for a casket and a death certificate. I may leave the hospital with a box instead of my baby. The chances are my body will take longer to recover from delivery than he even lived and even weeks after he is gone. The pain will be continual and the reminder of the loss still there. I’m not sure what would be worse – him passing away in my womb and never getting to see him or kiss him or even know the moment he has passed so I could talk him through it or even rub my belly for his comfort OR to actually get the chance to look into his beautiful blue eyes, fall even more in love, sway with him and talk lovingly into his little ears to just have to watch him take his last breath then have to hand his lifeless body over to a mortuary’s assistant. At 18 weeks I was already preparing myself for the worst day of my life. (thus far) … and now all we can do is wait.

Thank you for taking care of the little ones we have grown to love so much. Even if we forget to personally thank you – WE MEAN IT! We love knowing there are wonderful loving people like you who love caring for our baby and who our fighting to keep them healthy. We love you for loving our baby! … THANK YOU! … THANK YOU! … THANK YOU!!!

Another Trisomy video: (Warning: don’t watch if you are sensitive to crying) It makes me cry  EVERY TIME!

Josh and I are actually praying for a non-Christian medical staff so that we can be the light that we always pray to get an opportunity to be. I’m going to marvel in the way God works in their life through Jaxton! We are planning for him to have a full recovery and come home with us and Jake to be the best big brother ever!

823= Thinking of You

Much love from the Husmann Family

Praise Him

This is my favorite photo of Jaxton for 2 reasons:

1) His hands are OPEN and this brings us hope that he does not have one of the symptoms of Trisomy 13 which is clenched fists.

2) It looks like he is so peaceful raising his hands in surrender to his creator giving him praise. Praise Him! “You made all the delicate, inner parts of my body and knit me together in my mother’s womb.” Pslams 139:13

1 Chronicles 16:23
Sing to the LORD, all the earth; proclaim his salvation day after day.

Psalm 9:1
I will praise thee, O LORD, with my whole heart; I will shew forth all thy marvellous works.

Psalm 95:6
Come, let us bow down in worship, let us kneel before the LORD our Maker

Psalm 100
Shout for joy to the LORD, all the earth. Worship the LORD with gladness; come before him with joyful songs. Know that the LORD is God. It is he who made us, and we are his [a] ; we are his people, the sheep of his pasture. Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the LORD is good and his love endures forever; his faithfulness continues through all generations.

Psalm 150
Praise the LORD! Praise God in His sanctuary; Praise Him in His mighty expanse. Praise Him for His mighty deeds; Praise Him according to His excellent greatness. Praise Him with trumpet sound; Praise Him with harp and lyre. Praise Him with timbrel and dancing; Praise Him with stringed instruments andpipe. Praise Him with loud cymbals; Praise Him with resounding cymbals. Let everything that has breath praise the LORD. Praise the LORD!

Ecclesiastes 3:1-4
There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to uproot, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance.

Jeremiah 3:31-3-5
“I have loved you with an everlasting love; I have drawn you with loving-kindness. I will build you up again and you will be rebuilt, O Virgin Israel. Again you will take up your tambourines and go out to dance with the joyful.”

Malachi 4:2
But for you who revere my name, the sun of righteousness will rise with healing in its wings. And you will go out and leap like calves released from the stall.

John 4:23
Yet a time is coming and has now come when the true worshipers will worship the Father in spirit and truth, for they are the kind of worshipers the Father seeks.

Revelation 5:13
Then I heard every creature in heaven and on earth and under the earth and on the sea, and all that is in them, singing: “To him who sits on the throne and to the Lamb be praise and honor and glory and power, for ever and ever!”

***

It is a gray stormy day today in Indiana and I can hear the thunder roll, the wind is blowing and it’s started to rain (ok. more like pour).  Its such a perfect day to reflect and feel the presence of God surround me. I’m looking out and can see the fall colored trees blowing and loosing their leaves. It’s going to be a new season for them. It will be cold for a while then things will melt away and spring will come. What a refreshing reminder that some things are only for a season.

I can’t say I have ever felt closer to God than I do right now. It’s ironic that during my time of heartache with Jaxton I was able to rekindle such a love for my creator and appreciate all the things he has made.

20 weeks! …1/2 way there!

I consider it a pure joy to have been chosen to carry such a special baby.

Dear Jaxton,

You made it 20 weeks!!! Great Job Baby! You only have 20 more to go. Hang in there buddy. We are so excited to meet you. Jake has been kissing you through my belly and saying Hi Brother!  These past few weeks have definitely been a roller coaster to say the least. We have had so many friends and strangers praying for you. You are so loved already. The impact you have had on my life and others in just 20 weeks is unbelievably amazing. You are truly being used by the Lord already. Every time you kick I have to announce it because i’m so thrilled that you are still alive and holding on to life when the odds are so against you. Your either really stubborn or have a lot of perseverance. Either way I’m ecstatic that your here! I think about you all the time and research all the things we know about you and I’m not only asking for one miracle but 3.

1) for the Trisomy 13

2) for the holoprosencephaly

3) All the umbilical problems

Jaxton, You are in the hands of a BIG God. There is NOTHING he can’t do. Your life is in the same hands who command the oceans where to stop, tell the mountains how high to reach, Shut the mouths of the lions to protect Daniel, Kept Shadrach, Meshach and Abednego safe from the flames, talked through a burning bush, fed the 5,000 on fish and bread, Brought Jairus daughter back from the dead, parted the seas for the Israelites to get across. Your creator Loves you and made you perfect in his sight. We believe that God can and does do miracles and that is specifically what we are praying for. We have the same faith of the woman who touched Jesus cloak to be healed of her hemorrhages. (Matthew 9:20-22, Mark 5:25-34, Luke 8:43-48)

I once heard a quote that said “Tell me how big your problems are and I’ll tell you how big my God is.”

But my dear son, Even if he doesn’t answer these miracles we have prayed for we will still love the LORD and trust his will for our life and yours.


My marriage mentor was talking to me last night and mentioned she would be praying for a MOMENT OF BRILLIANCE. I hope that this Doctor and his nursing staff are non-believers so that we can show them the faith we have through this. I want God to perform such a huge unexplainable miracle that the MOMENT OF BRILLIANCE hits them square in the face like a ton of bricks.  🙂

 

He shall be called…

 

 

We have named our son Jaxton!

Here is where YOU can help….

what should his middle name be???

We look forward to reading all the suggestions  🙂

 

Please join us in praying for Jaxton’s Healing!

Trisomy 13, Holoprosencephaly, Umbilical Hernia/Omphalocoele, Single Umbilical Artery.

time to kick it.

We have a name for the baby! We will be announcing it soon and also we’ll be asking for suggestions for a middle name! Put your thinking caps on!

I felt him kick so much today. It was a great day of little nudges reminding me he is still alive and I am holding on to hope for his birth. The days I don’t feel him I get really worried and think the worst.

“Lord, remind me how brief my time on earth will be.
Remind me that my days are numbered—
how fleeting my life is.
You have made my life no longer than the width of my hand.
My entire lifetime is just a moment to you;
at best, each of us is but a breath.” psalms 39

My days are numbered just as everyone’s are and so is my baby’s, but only God gives and takes life in his perfect timing.

I am 19 weeks now and unfortunately there are some tough conversations we are having to talk about. Hard things like burial plots and infant/fetal caskets. We are not talking about these because we have lost faith in God’s awesome hand, but because the statistics are against us and we’d at least like to be prepared ahead of time instead of waiting until the moment he passes and scramble to figure it out. We’d be so wrapped up in the emotions and in that moment the last thing we’d want to talk about are the dirty details. If we can get some of this painful stuff out of the way now then we can really focus our prayers on the will of God, but also pleading our best case to him. I’m so thankful to Joyce, Josh’s Mom, for handling these heavy decisions with me.  I never thought this would happen to me. This is always a story you hear about a friend of a friend, ya know what I mean. I know his life already has touched so many people’s hearts that even now the Lord is working in his life. He is definitely a huge part of my on going testimony and I wouldn’t ever wish to have not had him.

Yes, Looking at this picture makes me cry and to know it could be MY reality is a very tough pill to swallow. But to hear a family say that even the 10 minutes their baby was alive was the best moments they could ever imagine… it gives me so much hope and joy to look forward to seeing our baby face to face. To hold him close to my heart and kiss his little perfect lips. To smile at him and tell him how much we love him and have waited to impatiently for him to get here!  🙂

He is perfect. no mistakes. no faults. no errors. He is precisely the way his creator made him!

I know my God already knows our son’s days wether gestation or life. He knows how much Josh, Jake and I can handle as a family. I heard 90% of marriages with a special needs child ends in divorce? Is this true??? It makes my stomach turn to even hear that. Josh and I have become SO much closer through this time and he is becoming an off the chart amazing Daddy to Jake! The value of life has sky rocketed in our house. There’s not much to complain about when you know at any moment we could face one of the hardest days of our life.

Sorry this post is so heavy and scattered all over the place!

… and he gives a few more kicks right before I post this… he’s got a fun sense of humor!

love him sooo much already!