{Dear Lisa} – from Nurse Wendy

Dear Lisa,

I have thought about you, Josh, Jake, and Jaxton so much over the past two weeks, and continue to wonder how I was so blessed to be able to be there with you all when Jaxton was born, get to know you all and spend time with you while caring for Jaxton and be present with you and your family when sweet Jaxton took his last breath.  I have spent a great deal of time grieving your loss over the past few weeks, and wishing, I too, could make sense of why all of this happened.  I still really don’t have an answer, as I know, neither do you.  God has a plan, and it is not our job to understand “why”, but to trust in him that he knows exactly what he is doing.

There are so many moments I will always remember about the 2 week journey I was blessed to take with you and your family.  If you do not mind, I would like to tell you about a few of those moments. I was going to post this in response to your latest blog post, but thought I would send it to you privately, and if you wanted to share it with others,  you could.

Meeting Jaxton, you, Josh, and sleepy little Jake on that first long and very scary night. I realized from the first moments I met you, that there was something very special about your family, and the entire situation that was transpiring in front of me over the first 12 hours I was there that night. I didn’t know how or why it was special at the time, but just had a feeling that something I had never experienced before was about to take place.   I told you that normally admission’s were not always on my list of “favorite things” for my job, but I was asked when I walked thru the door that night if I would take an admission, and I immediately said “yes”… not just “yes”, but  “yes” with no hesitation at all.  I found that unusual at the time, but don’t now, in retrospect.  I learned later from you that your c-section was scheduled for 4 that afternoon, but you had eaten a piece of toast, which delayed your C-section until 7.  I came on shift at 7, and Jaxton was born at 7:35pm. Because you ate that toast, I was able to celebrate Jaxton’s birth”days” with him and your family every night I worked, at exactly 7:35 pm.  Something I would have missed, had you had your c-section at 4 as originally planned. 🙂

I remember talking to you that first night about how perfect Jaxton was, and talking to Josh about how beautiful his hands were.  I always loved his little, wrinkly hands.  He needed to grow into his skin a bit 😉

I remember giving him his first binky, and being there when you, Josh, and your family saw him suck on it for the first time.  Him opening his eyes, and looking around.  I know he was saying, “Why have you been holding out on me for so long?” LOL.  He definitely loved getting your milk on his binky and then sucking on it.

I remember sitting with you and Grandma watching a sweet video about another family who had lost a baby to Trisomy 13, and praying that the same fate would not fall on you and your family.  I remember reading your entire blog at four in the morning during my shift three days after I had been blessed to meet you all, and remembering how my heart shifted from a “medical” way of looking at things, to a nurse who while trying to keep my heart from breaking, also found meaning behind my faith and my own life, and wanting nothing more then to make every moment for you and your family the most meaningful memorable moments you could have.

I remember you asking me, “What would you do, if this was your baby lying in this bed?” as we stood around Jaxton’s bed one night at midnight looking at him. To this day, (the tears well up in my eyes the same as they did at that moment).  I remember that I couldn’t answer you, because in my heart of hearts, I knew that I didn’t have an answer for you. I remember that question changed me and my view point completely as a nurse not just for Jaxton, but for every family I will ever take care of from that moment forward.  I cannot begin to judge or criticize, or think I know what the right answer should be, when I have never walked the road that a mother walks with their sick baby.  I believe that I have always been empathizing with my families, but always preferred to look at things from an entirely medical perspective, and you and Jaxton changed me. You showed me how important it was to remember the medical of course, since I am a nurse, but to hold onto the “True Heart” of each patient, family, and the moments that I have with them. I cared for Jaxton, and you all differently from that moment forward.  I wanted nothing more for Jaxton to be completely healed as all of you did, but wanted to also make sure that every moment you had with him when I was watching over your family was as special and memorable as it could be, allowing you to get to know Jaxton in every way possible; memorizing his face, and his sweet smell, learning what he liked and didn’t like, and how he looked around when his eyes were open as if he was taking it all in, (even at his newborn age, he was so curious).  I hoped that you would feel as though you got to know Jaxton so well, despite the short time he was with you here on earth.

I remember Gracie and I buying Jaxton his cookie monster cupcake for his one week birthday, and then learning you had bought Jake a Cookie Monster doll downstairs in the gift shop that same day and wondering what was the probability that that was a coincidence.

I remember crying as I sat in my car after coming to see you one morning with my own baby, and hearing that Jaxton’s second breathing test had not gone well. I remember my baby seeing the tears in your eyes and then repeatedly asking to hug you as if she knew why you were crying.

I remember being with you at some very scary moments, and also being present at some very fun times as well. I remember watching you, Grandma, Josh, and Josh’s sister as well as Jake and your brother-in-law through the room window laughing and enjoying each other’s company, and feeling my heart swell because I was so happy that you were able to make Jaxton’s room home for you all while you were here with Jaxton and how wonderfully supportive your family and friends were.

I will always remember our talks, our late night laughs about Jaxton’s “nose bugers”, and how proud his big brother would be at his poops. 😉

I will always remember Jaxton being YOUR “Best Boy”.  You called him that so tenderly from the very first moment I saw you with him. I always thought that was the perfect name for him, and every time you called him that, I felt my heart swell up a little bit more, and I could feel the tears start flooding my eyes.  He was your “Best Boy”.  He knew it, and I know he always felt that too.  I think if he could have spoke to you, he would have called you and Josh “Best mommy” and “Best daddy” too.

I will always remember the last 24 hours and 30 minutes I had with you all and Jaxton. As I said, I feel so blessed to have been the nurse there for you in the beginning, the last moments in which we said goodbye to him, and so many of theprecious moments in between.  I remember Josh reading his passage to him as you were holding his sweet body so closelyskin to skin, kissing his lips (something you were unable to do because of the ventilator tube since he was born), Psalm 139:13.    I will always remember as I sat next to you and Josh, crying with you, how incredibly perfect that scripture was. As if it had been written specifically and lovingly for Jaxton (as well as all that knew him).  I remember my own faith being renewed as Josh read those words, and feeling so incredibly grateful for being able to share those all too short weeks with you and your entire family, and especially with Jaxton.

I will always remember Room 1, as “Jaxton’s Room”. I still walk past that room and think his name banner should be hanging there, and find myself sad that it isn’t.

More then anything else, I will remember Jaxton and your family as being the baby and family, after so many years of nursing, that truly changed my viewpoint and the way in which I was a nurse for other families going thru similar situations as yours.  He showed me how truly important nursing with my “Heart First” could be to not just my patient and their family, but to me as well.  Jaxton, you and your family touched my life in such a profound way; I do not know how to adequately express it in words.  I do hope that this letter will at least give a glimpse to your mommy and daddy, as well as anyone else who reads it, just how amazing you and your entire family are to me. I will never forget any of you, and your message will always remain in my heart;  for you changed the way in which I view life, my faith, nursing, and the way in which I am a mommy to my own baby.  No moment will be too busy, too hectic, or too rushed to not take time to truly “be” in the moment with Grace. To take in every breath, laugh, tear, hug, kiss, and sigh as if it was the most important, and to love those moments, and never take one of them for granted.  You and your family have changed me for the better, and for that I feel so blessed.

Jaxton,

“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.  Thank you for making me so wonderfully complex! Your workmanship is marvelous–and how well I know it.  You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. You saw me before I was born. Every day of my life was recorded in your book. Every moment was laid out before a single day had passed. How precious are your thoughts about me,* O God! They are innumerable! I can’t even count them; they outnumber the grains of sand! And when I wake up in the morning, you are still with me.” Psalm 139:13

Lisa, sending much love to you all.  Know that I am thinking of you so often during this difficult time.

~ Rest in Peace sweet Jaxton ~

Love, Wendy

My friend Wendy,

We prayed for YOU and all of Jaxton’s nurses and doctors since we knew he would one day meet you all. What an answer to prayer you have been to Jaxton and our whole entire family. You have been there for the most special and most difficult times in our whole entire life. It was not a mistake that I ate that 1/2 piece of toast and that you said “Yes!” to admitting Jaxton! You were the answer to the prayers we were specifically praying. Although we did not get the MAJOR miracle we had been so hoping for, God certainly provided for us.  Not only did he add Jaxton to our family, but YOU, Gracie and Shari have been added as well. For as much as you LOVED our son we love you for loving him! You have said so many times that Jaxton & our family had affected your life, but for some reason I didn’t really believe you until now. You have equally affected our life. The nurture and care you provided for us was unconditional. Even when we asked the same question 100 times you still had patience with us. You cared about what our concerns were. You checked in on us and visited us on your days off. Although you didn’t know exactly what to say when I asked you what you would do, you knew how to talk from a mothers heart. You tenderly helped us come to decisions about Jaxton’s last moments. You lovingly anticipated my needs and held my son as I walked away for the last time and that is a memory I will never forget and I’m so thankful. Thank you for letting me know he was in good hands or else I never would have been able to leave.

We love you so much!

Lisa, Josh, Jake, Jaxton & our whole family!

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.

{Pictures of Jaxton’s Birth}

Here are 20 amazing pictures of Jaxton’s birth.

Thank you Jessica Johnston Photography

 

We have been so incredibly blessed by Jessie documenting our pregnancy, birth and life of Jaxton!

 

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!

8:54pm Jaxton’s Bear

i was able to go over and see jaxton and josh. they are both doing so great! josh is right by jaxton’s side, holding and rubbing his little leg and talking to him the whole time. he tells him what the nurses are doing, he cheers him on, and tells him he is doing a good job! it is the most awesome thing and brought tears to my eyes…what an awesome dad! the neonatal doctor came over while i was standing next to lisa. he said that they are running tests, but jaxton is still proving to be confusing. he has signs of trisomy 13/18 but he does not have some of the most classic signs (ie he has no cleft defects). they are taking x-rays of his heart and his brain to find out what is going on. while i was in with jaxton, he looked so cute. apparently i got the info wrong, he weighed 3lbs 12 oz. his coloring looked good and he was squirmin all over the place! he even opened his eyes a few times and kept moving his mouth and tongue around to figure out was was going on with the ventilator 🙂 i walked back over to lisa’s recovery room so that lisa could call josh on the phone…it was so sweet. they are both doing so well. they both have such a peace about how things have gone and how they are going. there is still alot going on, but we are blessed and encouraged  so far.

more to come later! aimee

ps. jake is having a blast at his friends house, he is looking forward to a sleep over!

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

{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

34 weeks {cantaloupe}

34 weeks – Size of 4 1/2 lb. Cantaloupe

 

Hey Jaxton!

You are 34 weeks now my little melon! Or at least I think you are. Last time we went to the Dr. you were measuring about 2 weeks smaller so maybe you are the size of a 3 3/4lb jicima. This has put a little kink in your due date determination for right now. I guess we might do a c-section any time between Feb 23rd and March 14th depending on the Doctors recommendation. But that’s neither here nor there. I’m  just getting so excited and so freaked out! The time has been so slow and so fast at the same time!

Daddy and I have been praying for you so much. Even Jake prays for you at bed time. And I should let you know that he is borrowing your Jaxton Owl blanket until you come. He says “Jaxton Blanket” every nap and bedtime and will cry if he doesn’t have it. He also brings me your “Jaxton Lamb” in the mornings 🙂 I know he loves you already. Can you feel his keessies on my belly? Do you hear him singing “Yes, Jesus loves Jaxton?” Can you feel him blow raspberries on you and tapping you? I really hope so. You are so loved already!

I have had so many people tell me they are praying for you! Here are 2 of my favorites:

Brian Holland – “Praying God will show up and show off!”

Kathy Roberts – “Lord, Just go crazy with miracles for this baby!”

That makes me smile!!! The response to your life has been such a blessing to us already.

*     *     *     *     *

I have noticed as I have researched Trisomy 13 these past 16 weeks, that I only come across Christ believing blogs/stories that  have chosen to carry full term… Why haven’t I found a non-christian who has also decided that a chance at life is just as special and important for their baby? … Is it a lack of hope or that the Doctors recommendation for termination is a good enough reason for them? … It really makes me wonder. Is it because many parents are convinced that children with severe genetic disorders will only know pain, and therefore choose abortion? Are they basing it on wanting a “normal” standard of life for the child? Any insight? What are your thoughts?

 

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