[tri-med] Jessica new to list

Hi Jessica,

Welcome to the list, I'm Jocelyn, "Nanna" to Tess who has Trisomy 18 
and is 12 years old. My philosophy is "what will be, will be", We 
just gave Tess lots of love, took care of the breathing problems that 
we could, etc, Tess had a VSD.  We too were given a grim prognosis, 
but I think Tess was meant to be here. I am not overly religious, but 
still pray, but believe it does NOT "rest with God", that we make 
choices for the best for our child. I understand your feelings 
regarding surgery when she is so frail. Rest assured if you follow 
your heart and gut feelings your little one will respond if she is 
able, and you may be able to spend more time with her. Getting Tess 
to this stage was a team effort, from parents, family and friends. In 
the first five years of her life, I was very involved in her care. 
She came to mean a lot to me, and change my outlook on the value of 
life completely. I went from being completely ignorant about disabled 
children, to being able to see their worth. Tess has now developed 
pulmonary hypertension, and they told us her life was again limited. 
BUT TESS HAS OTHER IDEAS. She's still here, and for the most part a 
happy little girl with great personality.   All the best in whatever 
decisions you make.

Sincerely,

At 10:05 AM 20/06/2009, you wrote:
>I have been on the list serve for a month or two now, but have never 
>introduced myself.  I am Jessica and my husband is Dan.  We have a 
>3yo daughter, Hannah, and a new 11 day old daughter, Eva, who has a 
>translocation between CH4 and CH18.  She has a 4q deletion and 
>partial trisomy 18.  We were told to terminate, as she wouldn't 
>survive to term anyway.  We decided to carry her and were told she 
>was struggling in the womb around 30weeks.  She was not growing, 
>blood flow slowing down, etc.  We decided to deliver her via 
>C-section (she was breech) at 36 weeks, expecting to meet her alive 
>but not to have very long with her.  Well, she beat the odds and is 
>still here with us now - she is sleeping in her cradle next to my 
>bed right now.
>
>Anyway, she was diagnosed in the womb after they found a cystic 
>hygroma, heart defect (close to hypoplastic left heart), and a 
>bilateral cleft lip and palate.  The hygroma was gone at birth, but 
>her cleft is apparent and she is tube fed right now.  We just 
>returned from the cardiologist and got news that Eva is already in 
>heart failure.  The Dr did not think we have even one month left 
>with her - he estimates only 1 or 2 weeks.  He did say that if she 
>didn't have the chromosome issues, he would operate.  He said that 
>he has operated on several "trisomy 18 kids" and they "never" 
>survive.  Dan and I also believe that she is fragile right now and 
>we don't want to push the surgery only to have her spend her last 
>days in the NICU and pass away in the hospital.  I would like to see 
>that she survives longer than the Dr estimates and grows bigger and 
>stronger and can have the surgery a few months down the road.
>
>I see that several of your children have had similar heart issues 
>and survived surgery well.  However, they seem to have been older 
>when they had the surgery.  Eva right now has a narrowing of the 
>aorta, a VSD and a PFO, and small left side structures.  Can you 
>give me any advice or knowledge in this matter?  I don't even know 
>what to ask for specifically.  I just want to know what happened in 
>your cases and what you would recommend we do in our case.  Keep in 
>mind that Eva is less than 4lbs, is already showing signs of heart 
>failure and probably has underlying medical issues we are unaware of 
>at this time.
>
>I am very happy to have found this group.  Your messages have 
>provided support and hope for us through the last few months.  I 
>hope I become one of the moms who can share my child with you all 
>for years to come.  However, if I loose my daughter down the road, 
>it is comforting to know that I will not be alone and have so many 
>wonderful people to turn to for support.
>
>Thank you for anything you can offer.
>
>Jessica
>
>
>
> > Date: Thu, 18 Jun 2009 07:01:21 -0700
> > From: nancii@xxxxxxxxxx
> > Subject: [tri-med] Re: Denise - would some letters from parents help?
> > To: tri-med@xxxxxxxxxxxxx
> >
> > Just like Annette, Soleah was born with an ASD, VSD, PDA, & PFO - 
> had open heart surgery at 3 months also and no longer needed meds 
> (maybe from 6 months after the surgery) - she did end up needing a 
> pacemaker as a result of the surgery (a known risk from the patch 
> that was sewn in to patch her large VSD)
> > Would it help if some of us put together a letter to take to your 
> doctor?  I would be happy to do so.  We could tell about our 
> children medically and personally and also list where we are from 
> and what procedures they had done.  I'm open for contact from anyone.
> >
> > Let me know . . . I'll do something and send it to you privately.
> >
> > Nanci
> >
> > --- On Wed, 6/17/09, Annette Oseguera <tri18412@xxxxxxxxx> wrote:
> >
> > From: Annette Oseguera <tri18412@xxxxxxxxx>
> > Subject: [tri-med] Re: (no subject)
> > To: tri-med@xxxxxxxxxxxxx
> > Date: Wednesday, June 17, 2009, 2:53 PM
> >
> > Annette was born with an ASD, VSD, and PDA.  She had open heart 
> surgery when she was three months old.  At eight months, she no 
> longer needed any heart meds.
> > Annette
> >
> >
> >
> > --- On Mon, 6/15/09, DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx> wrote:
> >
> > From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
> > Subject: [tri-med] Re: (no subject)
> > To: tri-med@xxxxxxxxxxxxx
> > Date: Monday, June 15, 2009, 5:04 AM
> >
> > Hi Susan
> > Thank you for your reply.  Unfortunately I live in Northern 
> Ireland so finding a good doctor has proven very difficult.  I am 
> still trying and staying as hopeful as I can but my son was also 
> diagnosed with a heart defect 2 weeks ago so every piece of news we 
> get just makes matters worse and so far the doctors locally have 
> all refused him any help to survive. They are so sure he will not 
> be born alive that I am increasingly angry with them all.  I have 
> to believe they are wrong and they dont know everything and we will 
> get to spend some time getting to know him.
> >
> > Thanks again
> >
> > Denise
> >
> >
> >
> >
> > ________________________________
> > From: G&S <hardyboyz@xxxxxxxxxxxx>
> > To: tri-med@xxxxxxxxxxxxx
> > Sent: Sunday, 7 June, 2009 6:37:50 AM
> > Subject: [tri-med] Re: (no subject)
> >
> >
> >
> > > My unborn son has been diagnosed with trisomy 18 and a congenital
> > > diaphragmatic hernia and I have been told nothing can be done, 
> he will not
> >
> > > be incubated to keep him alive and there is no hope. I can find 
> no details
> >
> > > of similar cases and wondered if anyone could give me any information.
> > > Many Thanks
> > > Denise>>>>>>>>>>>>>>>>>.
> >
> >
> >
> > Welcome Denise and so sorry to hear of you sons diagnosis.  While 
> T18 is not
> > necessarily fatal when they are looking at that with the diaphragmatic
> > hernia they are less likely to be grim. What you need to do is find a
> > neonatologist at a level 3 hospital that believes these kids can 
> live. Sadly
> > to say if you are in Ontario Canada that is not likely ( I only say this re
> > recent discussions with a neonatologist re the care of my deceased daughter
> > who had t 18  ) if they can fix the defects these kids can live!  Rebecca
> > was 14 1/2 years before she died and we loved her every minute  !  she also
> > had a profound effect on many and was actually a maid of honor at 
> a wedding!
> >
> >
> >
> > Susan Mom to Rebecca T18 M 6/6/91-5/2/06 and Mark ADD/LD age 16
> >
> >
> >
> >
> >                   Building ___ooOOoo__ Rainbows
> >                       www.trisomyonline.org
> >                   Families Helping Families On-line
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >
> >
> >
> >
> >
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >
> >
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> >
>
>_________________________________________________________________
>Lauren found her dream laptop. Find the PC that's right for you.
>http://www.microsoft.com/windows/choosepc/?ocid=ftp_val_wl_290
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
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>06/19/09 17:56:00



Jocelyn,  wife to Frank,  Mother to Ian, Gillian and Susan, Nanna to 
Carly 22  Mathew 20,  Ashleigh 19, Alex 17,  and Tess  (Trisomy 18,) 
age 12 yrs,  & Benny the Maltese, plus one amazing DIL and two 
amusing SIL's of whom I'm very fond, and their extended family who 
are too many to list here.   

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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