Posts Tagged ‘Omphalocoele’

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!

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 7th – 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 29th – 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 30th – 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 4th – 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 2nd 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.

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