[tri-med] Re: Josefina

Hi!  Welcome to the list!
My daughter also has one of the rarer trisomies...a partial trisomy 17p.
She also has a g-tube and I also pumped breastmilk and fortified it with
formula to increase calories (for over a year!).  I often wondered if just
plain breastfmilk would have been better.  She also suffered greatly from
reflux, to the point where she would vomit so much her esophogus was
bleeding.  It was horrible.   We had her on Zantac, erethromyacin (sp),
reglan, nothing worked.

The thing that finally did make a huge difference was getting the g-tube and
the Nissen fundo surgery and putting her on Prevacid.  She started the med
at about 4 or 5 months and had that surgery at 6 mo.  She is now on 30 mg of
Prevacid a day and is doing pretty well.  Did your daughter have the Nissen
along with her g-tube?  I have heard that the g-tube can make reflux worse
so they often do the Nissen just to make sure they don't create more
problems.

Well, please keep us updated and feel free to ask any and all questions.
There is always someone on this list who has been there, done that!

Take care,

Irene
Christina (4), Caroline (2 with partial trisomy 17p) and Kallie (born
6/23/05)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

On 3/26/06, Vladimir Vallenas <vvallenas@xxxxxxxxxxx> wrote:
>
> Hello everyone,
>
> My wife Monica and I have been registered and following posts to this list
> for some time now after the birth of our daughter Josefina (1/1/06) who
> was
> diagnosed with partial trisomy 6p right after she was born.  It is
> probably
> needless to say how this impacted our lives from that moment on.  After
> spending her first 10 weeks in the NICU of the Chicago Children's Memorial
> Hospital, Josefina came home and is adjusting slowly to her new
> surroundings.  We thought this is a good time to introduce Josefina to the
> tri community as we begin the different challenges of raising a child like
> ours.
> Josefina's main problem is the liver which is not very healthy and is not
> working properly in terms of eliminating bile in to the blood stream.  The
> liver experts here (world class professionals as I understand) can not
> determine the reason for this malfunction yet, so there will be an
> extensive
> follow up in the months to come.  Other complications she has are related
> to
> her heart (common among our kids as I learned) but we were told they are
> not
> as critical for now.  She had a PDA done already and a G-tube insertion.
> I'd like to take this opportunity to also ask a question.  Josefina is on
> a
> every-three-hour feeding schedule (70cc of breast milk + some formula to
> fortify the milk to 27 cal).  She has been having a lot of gas accumulated
> (I know it is probably normal at this age) which is making her feel so
> unconfortable that right after she starts eating she would start cramping
> which in turn would exacerbate her reflux.  It is a vicious circle that is
> making feeding time a constant disconfort.  It is even preventing us for
> doing proper Speech therapy at home since she gets pretty upset by the gas
> pressure. Additionally, I wonder at what age do other kids her age (almost
> 3
> months) start spacing the feeding times to longer than every three hours,
> because by the time Josefina has to eat again she does not seem really
> hungry and having residuals from the feeding before causes her to reflux
> even more. She is taking 0.5cc of Zantac 2 times a day for the reflux (but
> does not seem to help).  Do you have any suggestions on how to overcome
> this
> situation?
>
> Thanks!
> Vladimir and Monica (parents of Josefina pT6)
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>


--

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

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