[tri-med] Re: laryngomalcia/Apnea

 
Dear Ruth, 

Thanks for your response. Last night, couldn't get the tummy to work, but
after I had succumbed to fatigue (we sleep in same room as Annie) my husband
found she was very happy and now squeak/congestion when he changed her
diaper, so he  left her on her back, and she slept well all night. Can't
figure our how all this works. 

We are very tired and weary. I have thought of you so often; your decision
tolove Matthew and care for him in any way that didn't involve invasion or
discomfort. IN hindsight, Annie would have died in a low-sugar coma. It
sounds so awful, but, there are so many worse ways to go. I must admit, that
I am a little annoyed with the Almighty right now. It almost seems that
abortion would have been the answer, and yet that is so evil, and I am so
against it. Why should it seem that those who choose it, and their babies
suffer less?  I know that suffering isn't necessarily bad, but surely not
fora small baby. Poor Annie, her little feet are poked so often (for sugar
test) they look like pin cushions, and sometimes won't give up even a drop
ofblood. 

My daughter has reminded me how much we just wanted to see her alive, and
maybe get a pic of all of us together, and we should be so grateful for
that.Sometimes when you are very tired, as I am sure you know, things don't
look very clear anymore. I guess I need to pray more. This is the time when
we feel God's presence the most right? I really don't even know what to pray
for. Life with no suffering is too much to ask. 

sorry for rambling in such a dreary way. Do you have a good bible passage
forsuch times? 

My time on hosp computer is up, 

Thinking of you often, dear Ruth, 

Thank God for you and blessings ot your family 

BArb




From: "Ruth" <t18mom@xxxxxxx>
Reply-To: tri-med@xxxxxxxxxxxxx
To: <tri-med@xxxxxxxxxxxxx>
Subject: [tri-med] Re: laryngomalcia/Apnea
Date: Tue, 21 Jun 2005 11:12:13 -0700

That is such great news! Unfortunately, the doctors responses are quite
often directed in this manner. I guess it is up to us to change their
minds...no matter what, it sure makes us mad!

Matthew does not have apnea so I cannot provide much help in this area, but
I know that there are others on the list who will respond. I will say that
the 100% saturation must be just wonderful to observe!

Hang in there Mommy and keep up the wonderful work!

Ruth, wife to Rudy, mom to Brendon (19), Scott (17), Joshua (13), Matthew
Rudy
(Full T18, born 09/13/01, and Rudy Matthew (born 08/13/04)
http://members.cox.net/t18mom

Character cannot be developed in ease and quiet. Only through experience of
trial and suffering can the soul be strengthened, ambition inspired, and
success achieved. ~Helen Keller

>-----Original Message-----
>From: tri-med-bounce@xxxxxxxxxxxxx
>[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Barbara Fallow
>Sent: Tuesday, June 21, 2005 11:01 AM
>To: tri-med@xxxxxxxxxxxxx
>Subject: [tri-med] laryngomalcia/Apnea
>
>
>  Dear friends, Well, last night we had quite a night of very
>noisy breathing
>and congestion; like the worse cold you ever heard (but no cold) While
>waiting for RT to come and try suction, in desparation, I flipped
>Annie onto
>her tummy on my legs and patted her back and guess what?? In 5 minutes,
>perfect silence and sleep!!! ENT feels probably laryngomalcia (sp?) but
>hesitant to scope with heart condition without sedation, and
>hesitant to use
>sedation. All day today, Annie sleeping on tummy, no o2 and 100%
>saturation!!! A miracle! The rest of time, while awake, we have her on our
>chest while slouching in the chair. Again, no desats. The only dsats have
>been on her back today (while getting blood taken) We are so
>happy to have a
>reason and see relief!   Her Dr. today talked about her "silent"
>dsats, when
>she is sleeping, and said it my be apnea.(We have witnessed
>these, and while
>she may miss a breath, she doesn't stop entirely. She said we
>could confirm
>with sleep study, but if so, it may require a Cpap, and then to quote " we
>really have to discuss how far we are going to go with poor Annie, if you
>know what I mean" I am quite shocked by this statement.   I believe I have
>read that Apnea (if she has it at all) lessens with age. Is this
>true? Annie
>does not have holopresencephaly. ( an aggravating factor, I
>believe) The Rt
>suggested that these dsats may even be related to her tongue, or even the
>laryngomalacia.   Do you very experience folks have some comments or
>suggestions about this or Dr. comments?   Truly, without the collective
>knowledge that I have acquired through all of you, I am sure our
>Sweet girl
>would not be here. Thankyou from the bottom of my heart Barb Baby Annie
>05/25/05 t13
>                   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

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