Review Ily Rae Foundation In rock, wisconsin, united-states | Ngo In Rock

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Ily Rae Foundation

Rock,

Wisconsin,United-states - 53511

Detailed description is Raise awareness for Trisomy 18 This story begins as any other love story does.
Boy meets girl they fall in love and soon a baby is on the way.TRISOMY 18.
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I am willing to bet most who read this have never heard of this.
I know I had never heard of it, I had no clue.
Now I wish I never had..
Let me give you to medical description all the mumbo jumbo that no one really understands anyway just words thrown out at you like a dictionary bouncing off one’s head.
Ok so here goes….
Signs and symptoms[edit].
Children born with Edwards syndrome may have some or all of the following characteristics: kidney malformations, structural heart defects at birth (i.e., ventricular septal defect, atrial septal defect, patent ductus arteriosus), intestines protruding outside the body (omphalocele), esophageal atresia, mental retardation, developmental delays, growth deficiency, feeding difficulties, breathing difficulties, and arthrogryposis (a muscle disorder that causes multiple joint contractures at birth).[3][4].
Some physical malformations associated with Edwards syndrome include small head (microcephaly) accompanied by a prominent back portion of the head (occiput); low-set, malformed ears; abnormally small jaw (micrognathia); cleft lip/cleft palate; upturned nose; narrow eyelid folds (palpebral fissures); widely spaced eyes (ocular hypertelorism); drooping of the upper eyelids (ptosis); a short breast bone; clenched hands; choroid plexus cysts; underdeveloped thumbs and or nails,absent radius, webbing of the second and third toes; clubfoot or Rocker bottom feet; and in males, undescended testicles.[3][4].
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In utero, the most common characteristic is cardiac anomalies, followed by central nervous system anomalies such as head shape abnormalities.
The most common intracranial anomaly is the presence of choroid plexus cysts, which are pockets of fluid on the brain.
These are not problematic in themselves, but their presence may be a marker for trisomy 18.[5][6] Sometimes excess amniotic fluid or polyhydramnios is exhibited.[3].
Genetics[edit].
Edwards syndrome is a chromosomal abnormality characterized by the presence of an extra copy of genetic material on the 18th chromosome, either in whole (trisomy 18) or in part (such as due to translocations).
The additional chromosome usually occurs before conception.
The effects of the extra copy vary greatly, depending on the extent of the extra copy, genetic history, and chance.
Edwards syndrome occurs in all human populations but is more prevalent in female offspring.[7].
A healthy egg and/or sperm cell contains individual chromosomes, each of which contributes to the 23 pairs of chromosomes needed to form a normal cell with a typical human karyotype of 46 chromosomes.
Numerical errors can arise at either of the two meiotic divisions and cause the failure of a chromosome to segregate into the daughter cells (nondisjunction).
This results in an extra chromosome, making the haploid number 24 rather than 23.
Fertilization of eggs or insemination by sperm that contain an extra chromosome results in trisomy, or three copies of a chromosome rather than two.[8].
Trisomy 18 (47,XX,+18) is caused by a meiotic nondisjunction event.
With nondisjunction, a gamete (i.e., a sperm or egg cell) is produced with an extra copy of chromosome 18; the gamete thus has 24 chromosomes.
When combined with a normal gamete from the other parent, the embryo has 47 chromosomes, with three copies of chromosome 18..
A small percentage of cases occur when only some of the body's cells have an extra copy of chromosome 18, resulting in a mixed population of cells with a differing number of chromosomes.
Such cases are sometimes called mosaic Edwards syndrome.
Very rarely, a piece of chromosome 18 becomes attached to another chromosome (translocated) before or after conception.
Affected individuals have two copies of chromosome 18 plus extra material from chromosome 18 attached to another chromosome.
With a translocation, a person has a partial trisomy for chromosome 18, and the abnormalities are often less severe than for the typical Edwards syndrome..
Prognosis[edit].
In 2008/2009, there were 495 diagnoses of Edwards syndrome (trisomy 18) in England and Wales, 92% of which were made prenatally.
There were 339 abortions, 49 stillbirths/miscarriages/fetal deaths, 72 unknown outcomes, and 35 live births.[9]Because approximately 3% of cases with unknown outcomes are likely to result in a live birth, the total number of live births is estimated to be 37 (2008/09 data are provisional).
Major causes of death include apnea and heart abnormalities.
It is impossible to predict an exact prognosis duringpregnancy or the neonatal period.[7] Half of infants with this condition do not survive beyond the first week of life.[10] The median lifespan is 5–15 days.[11][12] About 8% of infants survive longer than 1 year.[13] One percent of children live to age 10, typically in less severe cases of the mosaicEdwards syndrome.[7] Parents with surviving children who take part in support groups report that these children enriched their family and their couple irrespective of the length of their lives..
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Wow! A lot to take in right?? Ok so now let me tell you what it means to me and my family.
In February I found out my daughter and her boyfriend Dan were expecting.
I had mixed emotions about this as you can imagine.
But I loved Dan and he was wonderful with Alyahia which is Jazmyne’s first daughter.
The way we figured Jaz would be due late October with measuring last period and etc.
Jaz had her first OB apt and everything was great! Baby looked wonderful; heart rate was fantastic all was perfect! It’s weird looking back now and wishing you could stay in that moment forever…On July 3rd Dan made a decision that would have an impact on everyone who ever knew him.
Ultimately it cost him his life.
Dan died on July 4th his organs were donated to several people who were able to continue with life because of the selfless decision his mom was strong enough to make.
6 of those organs went directly to save children’s lives… we know he is smiling at us for that he loved all children.
This is Dan with Alyahia.
We miss him..
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On September 6th Jaz was at her doctor she had went from work because she was experiencing what she believed to be Braxton hicks contractions.
Janesville St.
Mary’s hooked her up to monitoring and found she was indeed in labor and was starting to dilate with her contractions being 3 min apart.
This was unnerving as Jazmyne’s due date was not until October 31st.
She was given meds to stop the contractions but they also gave her 2 shots of steroids just in case the babys birth was imminent.
Thankfully the contractions stopped and she was released from the hospital to be on bed rest, another apt was scheduled for 2 weeks later..
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Jazmyne returned to the Dr.
September 19th she complained to her Dr that she still was not able to feel Ily move, Jaz was significantly bigger then she was with Alyahia.
The doctor told her it was normal and hooked her up to the monitor to “prove” the baby was fine.
At this point Jaz was 7.5 months and had only felt Ily move a handful of times.
While on the monitor Jazmyne’s contractions were 1 minute apart and they were strong and they hurt.
Jazmyne was then unhooked from the monitors, told she could return to work, and sent home.
Later that night I ended up driving her to the nearest hospital which for us was Monroe ER where she was admitted and again given the meds to stop labor and more steroid shots for the baby’s lungs..
The next morning after unsuccessful attempts to stop the labor Jazmyne was transported to St.
Mary’s Hospital in Madison WI.
That afternoon we had more ultrasounds done with lots of new 3D images.
Jazs last ultrasound was done mid-June at 20 weeks so we were pretty excited to see Ily up close and personal! When the Ultrasound tech left the room the Dr.
immediately came in.
Dr.
Stafeil a high risk ob.
sat and looked at the ultrasound pictures for a long time, he went over with his own ultrasound and finally when I could take no more I asked him… what’s wrong.
What I would hear next will forever be in my heart.
There are some problems… Problems? Well problems can be fixed right? Jazmyne had a high amount of amniotic fluid a normal pregnant woman has about 10-15 CM of fluid… Jaz had 60cm; the baby had a VSD which is a hole in the lower chambers of her heart, and dandy walker which is a small cerebellum.
Ok well this did not sound like anything that could not be fixed… I mean they do heart surgery everyday on people infants included and I asked what the dandy walker was and he said well that it varies some that have it have a slight learning delay at the most others have headaches for the rest of their lives and still others have no effects from it at all.
The spectrum was huge.
It honestly did not seem like it was anything to be overly concerned about I mean so what if Ily had a learning disability..
That day an amniocentesis was completed to get an inside look so to speak about what was going on.
We would get the results back in a few days.
That day they drained 2.5L of fluid off of Jazmyne’s belly.
It did cause some contractions later that night but they were able to get them under control.
After that however Jaz was finally able to feel Ily move! On Wednesday September 25 we got news we were not even remotely prepared for.
Preliminary results showed Trisomy 18.
Devastating news for sure.
Not what we had ever heard of not what the Dr.
thought it was … everything about it seemed wrong, we prayed that there was a mistake at the lab I mean come on Jaz had all the testing done in the first trimester that tests for this for the chromosome disorders everything was NORMAL how can this be.
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But it was trisomy the final results came back and there was no mistake, there was no mix up in the lab..
Our family was going to find out firsthand how devastating this disease is.
We met with the Genetic counselor Natalie Salm and Dr.
Stafeil less than a week later and I honestly cannot recall much of the conversation I was numb and I could only imagine how my baby girl felt she not only had just suffered through the loss of her boyfriend and now there was a great chance that she would have to bury her baby girl as well.
I know we were given a ton of information that day about planning funerals and photographers that come to the hospital but all I heard was echoes in a tunnel.
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This is the last ultrasound picture we got.
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Cute isn’t she? Ok so we met with the NICU team and to put it nicely it did not go well.
It was the closest I have ever come to punching a nurse in the nose.
Jaz still being the distraught mom and rightfully so asked me to express what she wanted which was to treat Ily as the newborn that she is and NOT her diagnosis.
Simple enough right? No.
It was literally a fight to get them to even monitor Ily during the labor.
This NICU Dr and his nurse wanted Jazmyne to just have her and she would probably be born sleeping but that is just how trisomy babies are that they are expected to not make it so they basically don’t even bother with them.
I seen red that day.
I told them that Jazmyne’s wishes were for comfort lifesaving measures are performed and it was our goal to at least have Ily born alive.
We wanted that chance to meet her… Jaz needed that and I was willing to move heaven and earth to do that for her.
This nurse..
god help her said (looking at Jaz while saying this not me) “So you want us to take your baby out of your safe loving comfortable arms and place her on a cold hard table while we work on her and have her last and only moments on this earth be terrifying.” Are you kidding me?.
I expressed my displeasure to Dr.
Stafeil at Jazs next monitoring appointment.
He then brought in the younger NICU Dr.
and we were able to discuss comfort levels with him and not feel like we were being bullied and that same nurse came in as well.
I was told her she was to handle MY DAUGHTER with kid gloves she was not to be made to feel like she was a horrible mom because she wanted to try to save her baby.
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That night Jaz had the emotional strength to write up her birthplan.
I emailed it to all the Drs.
And to Natalie that day.
Everyone was on the same page.
The birthplan was simple it stated that lifesaving procedures were to be based on Ilys vitals not on her diagnosis and if chest compressions were needed that they must be only for 2 minutes.
The NICU Dr.
was comfortable with that..
On October 20th at 10am Jazmyne, Kelly and I reported to the hospital.
Jaz was set to be induced that day to eliminate to complications that may have been experienced if Jazs water had broken at home.
She was in good spirits and all was well.
Jaz was monitored during the labor and if the baby at any time felt stressed they would do an emergency C section.
Family started to arrive and pretty soon it was a full house awaiting the new arrival..
But a party it was not.
All of us knew what the outcome was likely going to be.
We could pray all we wanted but it was really in god’s hands now and we had to just prepare for the worst and hope for the best.
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Around 11 they broke Jazmyne’s water.
It was then that reality set in for us.
This was it Ily was going to be born; she would no longer have the comfort and security of her mommy.
It was all downhill from there.
Jaz labored and Ily would stress and we had Drs.
And nurses in and out of the room every 20 minutes or so.
Finally around 2am they told us they were going to prep her for an emergency C-section.
It was a given I would be in the OR with her, I pleaded with the anesthesiologist to let Dans mom in as well afterall Ily was just as much a part of her.
They agreed.
So we donned on our OR outfits and prepared for the unknown..
At 2:52am Ily Rae Mathis made her debut into this world I remember seeing this little ball being rushed over to the area on the side with a huge team of Drs.
Waiting.
I was ushered in there as it was Jazmyne’s wishes that I stay with Ily to make sure all was being done that needed to be done.
When I got into the room I asked the Dr.
Is she breathing? He said “yes she’s gasping…it doesn’t look good” follow the birth plan was all I could whisper.
They intubated and bagged her for a few minutes then stopped to listen to her heart “her rate is at 80 we are going to assist with some light chest compressions to see if it will improve.” I nodded.
I watched the clock at the 2 minute mark I asked them to stop and listen again.
There was no improvement.
“I want to see her” everyone backed off I did not know what to expect, I mean everything I read said that deformities were pretty much a given so I had no idea what to brace myself for.
The Dr.
went out to break the news to Jaz and I walked up to my new little grandbaby.
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“Hey baby girl” is what I said to her and I lightly touched the side of her right hand with my finger… she then did something amazing.
She opened her eyes turned her head to look at me and grabbed ahold of my finger.
It was surreal I then told her “I am going to take you to see your mommy” This is Jazmyne and Ily.
Ily was perfectly formed there was no club feet you hear is common with Trisomy there were no malformations at all.
It was so hard to understand how a baby could look so perfect but be so ill.
Ily was baptized right there in Jazmyne’s arms and we spent as much time with her as we could.
I told Jaz I had to go let family know that things did not go well and they would need to know before we took Ily back to the room.
Ily was still alive at that point but false hope was not going to be good..
I walked out of the OR to the hallway, I guess the look on my face gave away what had transpired my best friend Kelly ran down the hallway and gave me the biggest hug as I sobbed on her shoulder.
She then went into the room along with my brother Sean to break the news to the rest of our family..
Hello and goodbyes…..
You never know how strong you are until being strong is the only choice you have..
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Ily Rae Mathis weighed 5lbs 3oz and she was 17 ½ in long look at all her dark hair! She was so beautiful I know everyone says that about their babies and most babies are … But Ily was an angel that we had here for just a short time; I believe she came into our lives to teach us what it meant to fight.
This little one fought against all odds (trisomy babies usually pass away during miscarriages) but she didn’t she was a fighter and we are blessed that God chose us..
The Now I Lay Me down To Sleep foundation are the photographers who took all of the amazing photographs.
They are a group of volunteers that come in when they learn a family is about to experience to loss of a little one and they do all the photos for no charge.
This is an amazing organization and without them we would not have the incredible memories that we do.
We are doing the benefit to help raise money for the memorial, hospital bills and a donation to be sent in ILYS name to the NILMDTS foundation and awareness for this horrible disease to encourage women to get tested, not to be afraid of Amnio maybe then they will have more time to prepare, that was the one thing we wished we would have had was time.
We had 3 weeks to prepare we went from the happiest moment in life to the absolute horrifying.
And all during a process of still grieving for the loss of Dan.
Thank you for taking them time to learn a little about my family..
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Sheila .
Ilys Mimi

Established in the recent years Ily Rae Foundation in rock , wisconsin in united-states.


This is a well known establihment acts as one-stop destination servicing customers both local and from other of the city.

Over the course of its journey , this business has establihed a firm hold in the [category].

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Foods is provided with high quality and are pretty much the highlight in all the events in our lives.

Sweets and food are the ideal combination for any foodies to try and this Ily Rae Foundation is famous for the same.

This has helped them build up a loyal customer base.

They have started a long journey and ever since they have ensure the customer base remains the same and growing month on month.

As they are located in favourable location , becomes the most wanted space for the tourist.

For any kind and assistance , it is better to contact them directly during their business hours.

Premises has a wide parking area and need to avail special permissions for parking.

Pets inside the premises are not allowed and require additional permission.

Cashless payments are available and extra charges for the credit cards are levid.

They are listed in many of the food delivery networks for home delivery with appropriate charges.

They accept cards , cash and other modes of payments

Tips are not actually encouraged but customers are willing to offer any benefit as needed.

There you can find the answers of the questions asked by some of our users about this property.

This business employs inviduals that are dedicated towards their respective roles and put in a lot of effort to achieve the common vision and goals.

It is a effortless task in communiting to this establishment as there are various modes available to reach this location.

The establishment has flexible working timings for the employees and has good hygene maintained at all times.

They support bulk and party orders to support customers of all needs.