{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

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.

Knit in my womb

October 7^th – Compiling all the info I know about our precious Son.

Trisomy 13:

Trisomy 13 occurs in about 1 out of every 8,000 to 12,000 newborns. Patau syndrome is caused by the presence of an extra copy of chromosome 13, generally present at conception and transmitted to every cell in the body. Most cases are not passed down through families (inherited). Instead, the events that lead to Trisomy 13 occur in either the sperm or the egg that forms the fetus. Patau syndrome is the least common and most severe of the viable autosomal trisomies. Median survival age for children with Patau syndrome is 2.5 days, with only one in 20 children surviving longer than 6 months. However, some children survive into their teens and seem to fare better than might be expected based on reports from those who die in the perinatal period. Reports of adults with Patau syndrome are rare. The sex ratio at birth is slightly skewed toward females, presumably because of decreased survival among males, with continued skewing of the ratio further toward females as these children age.

Symptoms    –   (* symptoms we know our son has)

Cleft lip or palate – 70-80% of cases

* Clenched hands (with outer fingers on top of the inner fingers) * one picture with hands open!  🙂

* Close-set eyes – 60-70% of cases

Decreased muscle tone

Extra fingers or toes (polydactyly)

* Hernias: Umbilical hernia/Omphalocoele, inguinal hernia – 13% of cases

Hole, split, or cleft in the iris (coloboma)

* Low-set ears

* Mental retardation, severe (semi-lobar holoprosencephaly) – found in 60-70% of trisomy 13 patients (Severe mental deficits are prevalent in trisomy 13, occurring in 100% of cases.)

Scalp defects (missing skin)

Seizures

Single palmar crease

Skeletal (limb) abnormalities

Small eyes

Small head (microcephaly)

* Small lower jaw (micrognathia)

Undescended testicle (cryptorchidism)

* Single umbilical artery – 13-28% of cases

Fig 1. Kaplan-Meier survival curve (solid line) and 95% CIs (dashed lines) for children with trisomy 13, metropolitan Atlanta, 1968–1999 (truncated at 1 year).

Umbilical Hernia/ Omphalocoele

During the growth of the fetus, the intestines grow more rapidly than the abdominal cavity. For a period, a portion of the intestines of the unborn child usually lies outside the abdomen in a sac within the umbilical cord. Normally, the intestines return to the abdomen, and the defect is closed by the time of birth.

Occasionally, the abdominal wall does not close solidly, and umbilical hernia results. This defect is more likely to be seen in premature infants and in girls than boys.

Large and giant omphaloceles should be delivered at a high level tertiary center with pediatric surgery expertise and very good neonatology support. These babies often require prolonged respiratory support during reconstruction. Often, babies with large omphaloceles are delivered by Cesarean section.

Extremely large omphaloceles are not surgically repaired until the baby grows. They are treated by topical placement of painless drying agents on the omphalocele membrane. Babies born with omphaloceles can stay in the hospital from one week to one month after surgery, depending on the size of the defect. The baby’s ability to tolerate feedings will determine the length of stay in the hospital.   Babies are discharged from the hospital when they are taking all their feedings by mouth and gaining weight.

Please read Caitlyn’s Story! http://www.caitlynsstory.com/medical.htm

Holoprosencephaly

A frequent brain malformation associated with Patau syndrome, is associated with severe neurological impairment; development of the structural features of the mid face is disrupted when holoprosencephaly is present. Serious cardiac anomalies are often present. Most common causes of death are cardiopulmonary arrest (69%), congenital heart disease (13%), and pneumonia (4%). Survivors with Patau syndrome exhibit severe mental retardation and developmental delays and are at increased risk for malignancy. Infants who survive the neonatal period have an average length of stay in a neonatal ICU of 10.8 days.

Holoprosencephaly, a condition in which the two hemispheres of the brain are fused, is found in 60-70% of trisomy 13 patients. Holoprosencephaly is also associated with cleft lip/palate and other facial malformations

SUA/ Single Umbilical Artery:

Normally, when the umbilical cord develops, it forms three vessels: two arteries and one vein. However, in some cases, just one artery develops. Precisely why this occurs is not entirely known. It is suspected, though, that one artery may simply stop growing as it develops or perhaps that the primordial umbilical artery does not divide properly.

This malformation of the umbilical cord has been found to affect between 0.5% and 7% of pregnancies and 1 in 100 live births. Caucasian women are twice as likely to experience this complication compared to Japanese and Black women. Additionally, women having a multiple pregnancy are three to four times as likely to develop SUA. Other factors that may increase your risk:

• Advanced maternal age (over 40) – Not ME
• Having 3 or more previous children – Not ME
• Diabetes – Not ME
• Female fetal sex – Not ME

Anywhere from half to two-thirds of babies born with single artery umbilical cord are born healthy and with no chromosomal or congenital abnormalities. Of the remaining babies with SUA, some studies suggest that about 25 percent have birth defects, including chromosomal and/or other abnormalities. These can include trisomy 13 or trisomy 18. However, the most common pregnancy complications that occur in infants with SUA are heart defects, gastrointestinal tract abnormalities and problems with the central nervous system. The respiratory system, urinary tract, and musculoskeletal system may also be affected. One in five babies affected by SUA will be born with multiple malformations.

There are 2 purple veins shown around the umbilical cord in the illustration. Our son only has one.

 

Doing all this research has really helped me feel like I KNOW my son and am truly amazed and blessed that he is still alive!

Father, I thank You for creating my son. I know each strand of his DNA was fashioned by You, stitch by stitch, loop by loop, with a love that calls him to life. He was created in love, and for love. And in my heart, I want to express my love back to you for being such a wonderful Father to me that You would knit him together in my womb. In the name of Your beloved Son Jesus, I pray. AMEN.

It’s an “Extra Special” Boy!

September 29^th – We went to a 3D/4D place to finally find out the gender of our lil nugget of joy. We found out it is a BOY! ☺

But while watching the 4d we also discovered an abnormally large mass extending from the baby’s belly. The technician had never seen anything like it and advised us to show the pictures to our doctor. So we set up an appointment.

September 30^th – We have just learned earlier this morning that God made our baby boy “extra” special. In fact it seems that God may have given our precious baby boy an extra chromosome. This means he probably has some sort of Down Syndrome. Along with the extra chromosome the Dr. expressed concern in other areas too: Umbilical Hernia, Abnormal Heart, Spine and Skull development. I am 18 weeks right now.
He may not make it full term, He may be still born, He may live only a short time or he may live a happy extended life. It’s all in God’s good will.
We wish to know and love this precious boy in every way that we can.
Naturally, I am having a tough time dealing with the recent news. The constant thoughts that I am thinking are endless. I know to trust God in all things and He has a plan bigger than I could imagine. It is just a hard time wondering if we’ll ever get to meet our little guy. Wishing to hold him, nurture him with unconditional love and to slobber him with so many hugs and kisses that he tells us to stop!!! ☺

October 4^th – We had a follow up appointment today with a counselor and a fetal specialist. The counselor went over the information and told us that the previous diagnosis wasn’t exactly what they saw. They are pretty sure it’s not Down Syndrome (which is actually what we were hoping for given the mortality rate of the other options.)

We got positive and negative news:

Positive- Heart and spine are looking perfectly normal!  Yay!

Negative- Our baby boy probably has Trisomy 13 or 18 which both are fatal, and he has sever brain abnormalities which would result in him not being able to function with out tubes or help even if we was to make it full term. His brain is supposed to have a left and right hemisphere distinctly separated; unfortunately, his is all together in the front. (I guess the back is fine). He in fact does have an umbilical hernia and clinched fists. He also only has 1 out of 2 of the umbilical arteries.

So here we are praying that God works a miracle in the health of our baby.  We are so desperate to have God save our 2^nd son and allow him to live a very long and healthy life. We aren’t asking for a free pass or a smooth ride. We know it will be tough. I think we just want to know our baby and love him as much as we do Jake.

I find comfort in knowing that if he did pass in the comfort of my womb that he goes straight to heaven with God and all the other “extra” special babies. And as hard as that is to type with tears filled in my eyes I know it’s true. I know that in the moments when I am crying so hard and I have to remind myself how to breathe that God is in control. This precious life will not go to waste and he has already changed my life.

We are praying with each appointment that we hear more positive news and humbly putting our trust in God.