The Fine Line
Please note that the
following represent each family's individual experiences
and beliefs. Every family is different, and the needs and
feelings of the children involved will be unique. We
encourage you to seek professional advice if you have
concerns or questions with regard to these issues. Responses
to Family Room topic:
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I understand the feeling that you CAN'T let your baby cry,
because he is "sick". We went through the same thing
when we brought our son home, because we felt he was
fragile....but it just had to pass. As we saw that he was
going to be okay and on the advice his cardiologist, we just
started treating him like a baby boy, not a baby boy with HLHS.
E.H.
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| You are definitely not alone. For the first two years
of my daughter's life, I did not think much about that line: we set
limits, let her cry. Her heart was stable then. Now, she cries
a lot, and there is little I can do to comfort her. She has severe
Ebsteins' anomaly and her tricuspid valve needs to be replaced. She
is tired all the time and has reset her body temperature at 94 degrees.
I know that I need to set limits because she is a two year old, but I also
know that her poor behavior is not entirely her fault. When she is
tired she forgets the rules. I feel guilty for punishing her, but I
don't know how else to address the situation. Hopefully, after the
valve is replaced, we can go back to "normal."
M.S. |
| I have a daughter who is now 18 years old. She was born
with pulmonary and tricuspid atresia. I know what you mean about
never letting your child cry. I did exactly the same thing as you are
doing. My daughter is now a beautiful, intelligent, sensitive, and
very thoughtful person. The surgeries through the years have been
stressful, but not as difficult as now when she understands it all.
She now has Protein Losing Enteropathy (PLE) and recently had a
fenestration (a hole) between her right and left atriums. Hopefully this
will relieve her symptoms until she graduates, and then we are looking at
a Fontan revision.
Hang in there. Its worth everything!!!!
S.
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I am a mother of a six year old with Shone's syndrome (3 defects on left
side of heart). My son Gavin will have his fourth surgery in June.
Although I don't know much about your son's problem, I can relate well to
your concerns. I have 2 other children with healthy hearts.
Although Gavin does know how to work us at times, telling us he's tired or
dizzy, he is a well adjusted six year old. You may tend to help
Andrew more, but in the long run you will be able to tell when he really
needs you and when he just wants you.
My other two children handle it well, even my two year old is learning
not to wrestle with his brother (Gavin has a pacemaker). Gavin's
siblings don't understand everything, but they understand sometimes he
needs us. Also ask you doctor about any restrictions on crying. I
know when Gavin was smaller and much sicker they were more concerned then
now. You will do fine.
One last bit of humor : I decided when Gavin was about 7 months to
drive down to my in-laws ahead of my husband. Gavin had a doctor's
appointment in a town on the way, so it only made sense to finish the trip
instead of coming back and waiting on my husband. However on the way
down Gavin became very restless in his car seat and began crying. A
trip that was supposed to take 3 hours took about seven, because I
had to stop every 5 to 10 minutes to console him. My husband beat me
to his parents! I can laugh now!
J.
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My daughter Ariana had open heart surgery at one week old. After being in
the hospital for close to a month, now that I have her home I panic if she
cries, turning herself blue (cyanosis). I get scared to let her cry for
any amount of time fearing she'll put too much strain on her little heart.
I sometimes feel though that she can just let out a little cry and have a
family member come running to her because of her condition. I'm still
confused at this stage, especially being a first time mom trying to figure
out if she is starting to get spoiled from the quick attention that she
gets if she starts to cry. I really don't know myself how long I should
let her cry, especially now that she's learning that if she cries often
enough at night that she'll end up co-sleeping with me.
Is it possible that she can get spoiled from all the attention?
Please do not feel that you are alone in being confused about the
situation.
S.
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Prior to Kolbey's surgeries this past May 2002, I
also never let him cry. Our PC was concerned with his heart function,
therefore, we were basically told not to allow him to be upset! At
his 2 month post-op check up, we got the okay to let him cry it out.
Now, there is a fine balance. His sats are in
the upper 70's to low 80's which is his "normal". I do
believe that he needs to learn to comfort himself, but at the same time,
knowing each individual child's limits is a must.
Kolbey is 16 months old and sleeps through the night,
and sometimes he wakes up and fusses for a while. He has a cup of
water in his crib. So his comfort items are a burp cloth, Elmo, and
a cup of water.
I also do not want Kolbey to be completely
self-centered. I believe there are ways to teach compassion and
build strong character and still have a "spoiled child".
My 9 year old HH is spoiled, but, also a good citizen.
L.B. |
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