{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!

Josh Husmann – {my amazing husband}

It’s time for me to brag about my hubby Josh!

What a crazy ride we have been on together  this year! Moving to Indiana from California, starting Mercy Road, at least 3 trips to the emergency room, 1 Leukemia scare with Jake, everything we have endured with Jaxton and now the joys of potty training!

I can easily say that watching Josh through all we have been through has made me fall more in love with him. As you look at the pictures above the love that he has for Jaxton is so obvious. It’s not masked or covered, hidden or quieted. It’s a love that is profound, emotional & proud. He loves Jaxton and Jake with his whole heart and was not shy about showing it. In our 4 years of marriage I had never seen a tear fall from Josh’s eyes. Not because he isn’t emotional or that he is hard hearted, but simply because he takes stock in what to cry over. I have learned to understand this about Josh. The night Jaxton passed away I saw my husband cash in on that stock and cry tears of sorrow for the first time. I know the depth of love and pain that were colliding within him at that very moment and that has brought us closer together. I can lean on my husband, cry to him, talk to him, just simply being with him makes life seems better. He is the most amazing man I have ever met.

Josh is a man who is passionate about bringing people to a closer relationship to God. Since learning the extreme complexities of life through Jaxton’s chromosomes, it has made us value life and relationships in a different way. I have seen how Josh wants them to love their maker & creator in a whole new way. His passion has been renewed by our experience in knowing we will in fact see Jaxton in heaven one day. The promise of heaven and living for eternity with Jesus is more tangible in a way that wasn’t as clear before. I love his love for our Lord!

Josh is an amazing dad to Jake. He knows how to play and laugh with him like only a daddy could do. He is nurturing with  Jake and helps him grow in his journey with God. He initiates prayers and reads bible stories to him. I LOVE seeing them love each other!

When it came time to make tough decisions about Jaxton, he did not let the Doctor push him around. I respect him fighting for our son’s life the best he could! Even the doctors would admit that we put up a good fight for him and did EVERYTHING we could to save him. We admit that it was far beyond “comfort care” and well into “heroic care” because we saw Jaxton as a part of our family and was not going to just let him go with out digging our heals into the ground a bit!

I love the husband and father Josh is and I admire and respect him more everyday.

20,160 minutes without Jaxton

Dear God,

I have been so emotional lately and I know you understand. I think about my baby Jaxton all the time. When I wake up, through out the day, before I sleep and during my dreams. I hope and trust YOU know what your doing. I know in the deepest part of my heart you answered my prayers. You orchestrated Jaxton’s delivery to be here in Indianapolis surrounded by family. You planned it to be on February 23rd a whole week before his due date. You scheduled our nurses and doctors to be the perfect ones for us. You ALLOWED me the honor to meet Jaxton, rock him, kiss him, hold him, hug him, sing to him, read to him, talk to him, see his eyes, watch him breathe, feel his heart beat, change his diaper, bathe him, dress him, read scriptures to him and love him the best we could. YOU GAVE US ALL THOSE MOMENTS TOGETHER. Thank you for each moment of my pregnancy I had with him and the additional 14 days and 30 minutes he was alive. Each moment and each breath (even though it was supplied by the ventilator) was given by you. Psalm 139:16 “All the days ordained for (Jaxton) were written in your book before one of them came to be.” There are things you planned that blessed us and we still might not even know it. I’m so moved by his life and I thank you once again for letting me be his mommy.

I admit to being frustrated and disappointed with you right now. I think I’ve even told you to leave me alone on more than one occasion so far. I am heartbroken for Aimee, for April, for Marsha, for Kari and for Andrea and all my friends who know the pain of loosing a child. I’m saddened and sickened. I know the answers to all of my questions – it’s just not necessarily the answer that helps me heal right now. Knowing you are in control and your ways are better then our ways will be helpful someday, but today I’d like tangible answers please.

My heart is surrendered to you, but I am especially broken. I am hurting for my friend Aimee who’s life seems like one sad thing after another and now she has to endure the cruelness of going to the baby shower she was supposed to co-share next week for her baby girl. She sadly lost her baby over 2 months ago to Turners syndrome. Oh and to top it off in an ever sadder way – the baby shower is for a baby girl. (cue the tears) What kind of lesson is she supposed to learn from this? Isn’t the heartbreak of mourning enough to endure right now? I love Aimee’s questions on her blog about what it will be like to see Charlotte and Jaxton again.  (I know that she will have a perfect body, but will she be a baby? will we all be the same age in heaven?) I have such a heavy heart for Kari who found her baby Mason had suddenly and unexpectedly passed away in the middle of the night. At 5 months old his life was cut short the same week as Jaxton’s. Matter of fact we used the same funeral home. I am burdened for her loss and am at a loss for words.

I am going to start reading a few books that might help me through my new journey of understanding & healing. I Will Hold You in Heaven and Heaven is For Real.

Breath of Heaven (Mary’s Song)

Do you wonder
As you watch my face
If a wiser one, should of had my place?
But I offer all I am
For the mercy of your plan.
Help me be strong
Help me be.
Help me.

If you REALLY want to know how I am doing it is a toss up from minute to minute. I can celebrate fully Jaxton’s impact on this world and how incredibly special he was. His life had meaning and value far beyond my comprehension. On the flip side, there are times when I open the bible to read and come across a “Healing” story (specifically Matthew 8 & 9) and I burst into tears wondering “why not Jaxton?” It’s a constant see-saw. It’s only been 2 weeks though. I’ll be ok. i know time will heal and i’ll never forget.  I am confident in knowing that God will hold me up through these trenches. It won’t be easy, but i’ll get through it. Even though my heart is broken it’s still beating.

So as Jaxton, Charlotte, Mason, Sawyer and so many other precious babies play. Us mommies will stay here waiting to be re-united with you one day. We will keep your memory alive in our hearts and think of you daily while we are apart. Have fun little ones laughing and playing, singing songs, dreaming and joyfully swaying. In the sunshine I imagine you to be. Swaddled so tightly being rocked by thee.

Funeral {my glimpse of heaven is gone}

You can read Josh’s words on burying his son here.

 

My Dearest Jaxton,

You had all odds against you and yet you kept fighting. We knew the chance of you surviving was slim but we happily chose to carry you and love you the best that we could for as long as we could. We want you to know you were not a mistake. Your daddy and I prayed to have you and we are so glad we did.

But in the end one single extra chromosome took you away from us.

My heart is so heavy right now as I am missing you so much.  I miss holding your hands, stroking your cheeks, smelling your skin, kissing your nose, forehead, toes and frankly every part of you. I miss whispering into your little ears, reading you books, singing You Are My Sunshine and watching you feed. I miss staring over you just waiting for you to wake up so I could see your beautiful eyes.  I hope you know how much you mean to us! We had someone with you every moment of every day. You were never alone. You were loved every second of every minute!

As daddy and I were obsessing over numbers going up or down and as we celebrating over every small improvement we fell more and more in love with you. But now that you are gone I’m happy to know you are free from the constant beeping of machines, suctioning through the tubes, needles, the smell of hand sanitizer, and the relentless hum of the ventilator. As much as you loved sleeping on your left side and leg massages I’m sure heaven is a better place to be. A place with no omphaloceles, holopracencephaly, Trisomy 18 and no diaper changes which we know you will love!

I now know for certain I was carrying an ANGEL for 9 months. I shared your journey with the world and even before you were born you had an effect on hearts around the world. Literally, we had men and women from almost every state in the U.S. but even as far as: Afghanistan, Hollland, Egypt, Switzerland, Sweden, Costa Rica and South America just to name a few let us know how your life has effected them. I know you are an angel because who could touch so many lives with such a short amount of time. God had a special plan for you. I know that for 14 days I loved and cared for a beautiful Angel. I kissed an angel here on earth. I could have kissed you a thousand more times and it still wouldn’t be enough. As my fingertips felt your heart beating for the last time it all just happened so soon and suddenly my glimpse of heaven was gone.

I ache for you to be back with us and I could have bathed you in all the tears I have cried over you. My heart will never be complete with out you, my son, my angel, my sweetest Jaxton. You are the most special thing that has ever happened to me and I am so proud of you. I couldn’t be any prouder than to know how many peoples lives you brought closer to Jesus and I know that because of your life that number will continue to grow.  I don’t have the words to express how much I’ll miss you, but know that I desperately look forward to seeing you again.

I had the joy and privilege of being your mommy. Thank you for the best 14 days of my life.

We had over 80 people there some of which were his Nurses, Doctors, new friends, strangers and family. We know a lot of you drove hours upon hours to be there. Thank you all for celebrating the life of our son. It means the world to know Jaxton meant something special to you. It was a beautiful day that we were able to celebrate Jaxton’s life. But in true Jaxton fashion it had a twist! As we went to place his casket in the ground the cement vault was 1/3 full of water. I wasn’t about to put my baby in there Moses style and wanted the water out. Because the ground was so wet they needed to put him in a temporary place until the ground dried. So now we get to say good bye twice. It actually made me smile that we’d get to do this again and this wasn’t the last time I’d get to hug his casket.

It’s weird how life moves on even when you don’t want it to. Why isn’t everyone crying? Why is the earth still rotating? Why is the sun still shining? Why? So here I am looking at his last pictures over and over touching the screen just to try to get those moments back. I’m smelling his blankets, hat, arm band and anything that has a trace of his scent. How privileged I am to be able to have those memories with him. How fortunate I am to have been chosen to carry such a special baby.


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.

JAXTON PRAYER ALERT

He has crashed multiple times in the last 12 hours and has had to ventilated by hand once. We’ve decided to ask God for a COMPLETE miracle.  This afternoon or evening we’re going to take Jaxton off the ventilator and take his life out of human hands and place it into God’s hands.  We’re asking everyone to join us in praying for a COMPLETE miracle for Jaxton. We’re praying God completely heals him of Trisomy 18, he breathes on his own, his brain is healed, the omphalocele is gone, and he leads a long and productive life, here on Earth, healthy & happy and glorifying God in everything he does before he spends eterniity with Him!!!

Thank you SO MUCH for your prayers!!!!!!!!!!!!!

– Josh

Hate This

hey, everyone, this is aimee loeser again. i hate writing this!!! lisa called me and asked to update the blog so that everyone knows how today (Monday) went and the plan of action from here.

Jaxton had his 2nd CO2 test today. as you know, he had a similar test last week and did relatively well. that was not the case today. 😦 today, after being off the ventilator for 20 min they could tell things were not going as well as last time but were watching carefully, hoping things would get better. after 40 min into to test, jaxton started turning very pale which was a very clear sign that things were definitely wrong. the medical staff stopped the test after 40 min. in lisa’s words “today was the exact opposite from last week”.  jaxton has been uncomfortable and in some pain, so josh and lisa decided to “up” his pain medication and sedation.

there are so many things that jaxton has already overcome and done so well on. there are also several very big things that have not changed or gotten better. josh and lisa are now facing a very difficult decision! tonight at 6pm jessie (the awesome photographer) will go to the hospital to take more family photos. josh and lisa will spend time alone tomorrow with jaxton. it is breaking my heart to write this, but tomorrow, josh and lisa will hold jaxton and at some point turn off the machines that are keeping jaxton breathing and alive. jaxton will be sedated and will feel no pain.

i wish there was something else to be said, there are some many things running through my head, but nothing is right. i told lisa that i would do anything to reverse this for them…i am sure that is how you all feel. right now, all we can do is pray! pray that lisa and josh feel the love and comfort that only God can give! pray that they have peace tomorrow! pray for their time together as a family both tonight during pictures and tomorrow…that the time will be filled with only sweet memories! please pray that tomorrow, when it is time, that josh and lisa would not see jaxton struggling, that God would take him very calmly.

this all absolutely sucks to write…and i am so heartbroken. please join me in praying continuously for lisa, josh, jacob, and jaxton beginning now! thank you!!

2 Corinthians 1:3-7 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. if we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm because we know that just as you share in our sufferings, so also you share in our comfort.”

Strong… but not today. {Happy Anniversary}

For all the people who say I am “STRONG”, that they could NEVER go through something like this: I didn’t have a choice. This was the story I was given to live out. You just have to keep living. And even the days when I wished I didn’t wake up… I still did because it’s not my strength or timing it’s HIS. His plan was for us to share our journey with you.

“For I can do everything through Christ, who gives me strength.” Philippians 4:13

I have heard that Christ will never give you more than you can handle.

What in God’s right mind makes him think I am strong enough to loose my child? That makes me feel so insensitive and inhumane to think that my heart and feelings are able to handle such a loss. He must have me confused with someone else. Perhaps a teenager who accidently got pregnant, a woman who didn’t want anymore kids, a lady who tied her tubes and was not supposed to be able to get pregnant. Then I could see how this wouldn’t be as hard on them. But we prayed and have fought for this child.

Thursday Jaxton breathed on his own for an hour which was great, but when they took blood gas tests afterwards his Co2 level was REALLY high. His brain does not tell his body to exhale enough Co2 and turns into a toxin in his body. This means he will never live life off the ventilator. We are going to do another of this same test on monday just to make sure, but the doctors have already asked us many times to plan for next steps if he can not do it. I have been crying all day at the fact that now instead of being joyous about how many days he is here – I am so consumed in sadness for Monday to come.

I look over and see the bag for all his “souvenirs” that im going to take home instead of my baby. Things like 1st pacifier, lock of hair and footprint will never replace the smell of his head, the touch of his skin, holding his fingers, waiting for him to wake up to see his eyes and not ever hearing the sound of his first cry. I feel robbed. I can’t help but think that I am pumping and storing milk that he may never eat. I look at him and cry. My emotions are getting a hold of me and my heart is literally breaking. When I hold him I am in heaven, but just the act of handing him over to his nurses to lay him down makes me imagine what it will be like to hand his lifeless body over for the last time. I’M NOT READY TO LET GO. I’m starting to feel selfish for fighting for him and wanting him here when I see how painful it is for his IV’s to go in, his lungs to be suctioned out, to have tubes down his throat.

I’m not giving up on him. I guess you could say I am preparing my heart for what might happen, but how do you prepare for watching your child die in your arms. To never be able to hold them again. To have to wait to my own death to see him again. How do you prepare for your life to crumble in an instant?

I have suddenly grown resentful at times when I hear how he is changing peoples lives and become bitter at the sacrifice Jaxton is going through to draw people closer to God. I am certainly torn between keeping my son and giving him to God for his glory. My family and Jaxton are suffering in order for people to realize the sacrifice God gave his very own son so that they can have eternal life with him. Unfortunately, at this moment it doesn’t make it any easier to think every one is being blessed but me – I want my child! I would do anything for him. Sorry for the honest truth about where my heart is right now. It’s not anyone’s fault, but my own discouragement. My prayer is that God helps me with my disbelieve.

The father instantly cried out, “I do believe, but help me… [in] my unbelief!”
Mark 9:24 (NLT)

We are asking for prayers for Monday:

* His brain to tell his body to exhale all the Co2 that he is supposed to and also tell his Sodium and temperature to be balanced. If he doesn’t do this we have to make the decision about when to pull his life support. Obviously, we are PRAYING so hard for Jaxton’s miracle.


Song: Held Song: By Natalie Grant

“How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We’d be held”

* Happy 4 year Anniversary Josh! *

I LOVE YOU!!!


{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!

 

Woo Hoo Jaxton!!! {Breathing on his own!}

So Jaxton was able to breath on his own today for a whole hour! The doctors thought this was a good step, but when we took the tests afterwards Jaxton seemed to not have the full ability to get rid of the Co2 as needed to function with out the ventilator tube down his throat. His PH level dropped from a constant 7.3 down to 7.16 and it needs to be closer to 7.4. They may repeat the test in a few days to try again. I’m not 100% clear on the next step if he can’t be off the ventilator. I heard a trachea tube, but that would not be for quite a while.

We are still waiting to hear back the official test of the Trisomy 18 (Full, mosiac, partial) and the echocardiogram. But the technician said he didn’t think there was a Coarctation like the Doctors had originally thought. This is GREAT news!

So let’s recap shall we: No Coarctation – Thank you God! / Progress on breathing – Thank you God! / No VSD Heart Defect – Thank you God! / The left side of his heart is more than originally thought effecient – Thank you God!

So I found myself asking God “Why would you make so many things right, but just not one part of the breathing?” Then I felt him ask me “I have done all these things, are you going to trust me with THIS?” So verbally I said to him “Yes, I will trust you with this as well.”

Here are some pictures of Jaxton’s admirers:

One of Jaxton’s Favorite nurses WENDY!