Post: January 9, 2001 - New Member looking for Information
I just found this site while searching for information on hypoplastic right heart syndrome. My name is Pam, I am the mother
of three children, two boys Jesse(11) and Justin (4) and one daughter Emily (7) and we are expecting our fourth child (girl)
in May. Right now I am 23 weeks pregnant. At my routine 20 week ultrasound we were told that our daughter most likely had
hypoplastic right heart syndrome. The following week (Dec.21) we met with a pediatric heart specialist and a perinatologist.
The radiologist who did our first ultrasound said that our daughter likely had Downs Syndrome and might possibly have Trisome
18(I'm not sure I'm spelling that right). He said it was good we caught this early enough that there was still time to make
"decisions", meaning of course termination of the pregnancy. Having already seen our baby and felt her move this was of course
not an option for us. We were relieved when we met with the other Doctors and they told us they saw no evidence to suggest
Trisome 18 (she appears perfectly normal except for her heart defect). The heart specialists also said that this type of defect
is not normally associated with Down's but the only way to be sure would be to have an amnio. The perinatologist said that
if termination was not an option for us he saw no reason to risk the amnio so we have decided not to have it. We live in Saskatchewan
Canada where health care is free but not always the greatest. It is also very cold here and they have a heck of time getting
Doctors to live here so our choices are very limited, there are actually no pediatiric heart surgeons in the entire province
so we will have to go to Edmonton Alberta (9 hours away) for delivery. The only things they really told us about her heart
was that there was no apparent blood flow through the right ventricle and that the ventricle itself was very small and also
they could see no tricuspid valve.They said her heart is so small at this point that it is hard to tell the extent of her
problems. We go for another ultrasound on February 15 where they will hopefully be able to give us more information. I have
started reading your archived messages and I have read everything I can find on the internet but everyones defects are different
and I find it hard to compare. They said my daughter would have to have "shunt" surgery as soon as possible after birth as
well as future surgeries but they didn't really want to talk about what those would be until after they saw us again in February.
From my reading on the internet I am assuming they are talking about the Fontan and possibly the Glen. I apologize for making
this message so long but although I have many friends with children I know no one who has ever had a child with a heart defect
and though my friends are understanding they don't know what it is like to have a child go through heart surgery and I assume
anyone reading this does so any advice you could give me would be greatly appreciated. Thank you in advance.
Pam
Replies:
January 9, 2001 - Daschwab
Hi, welcome to the board,it sounds like the defect your daughter has is tricuspid atresia, that is what my son has and
thier are a few more TA parents here, the sugeries are the bi-directional glenn and the fontan that is correct. I to was diagnosis
in utero at 21 weeks, my son is now 7 months old he was 6.5 weeks premature so at 3.8 lbs he has the bt shunt put in he is
doing amazing, he now wieghs in at a whopping 13 pds and laughs at everything, we still have a long road ahead of us and the
long term future is still unknown but really it is for anyone right? It is good they caught it early sometimes people are
not so lucky when it is not known and the baby dies. I am sure you will get more responces thier are some really knowledgable
people on this board this is a really good place for support, it helped me alot. Good luck and I will be praying for your
little girl.
Stacey - Dylan TA 7 months and Ryan HH 4.
January 10, 2001 - Kathieam2
Hello and welcome. I am a mother of a child with Tricuspid Atresia. Theat means that her tricuspid valve and right ventricle
were not formed right. Danielle is almost 12 yrs old and has had 2 operations (Fontan and the Shunt {in that order, they did
the classic Fontan first}). You sound like me checking out as much information on the net. I was wondering if you had checked
with the CHildren's Heart Society yet? They are the support group for Canada that has a wonderful website to check out. www.childrensheart.org
Diane Barilko is a wonderful lady I met through the internet when I first started in 1999 checking through things on Danielle's
CHD. I hope that this helps. I have heard of the hypoplastic right heart so hang in there. We are thinking of you. Welcome
again.
Take Heart,
Kathie (Danielle almost 12 yrs Tricuspid Atresia & Kaitlyn 6 yrs Heart Healthy
January 10, 2001 - Jellybeans25
Hi Pam,
I'm from Calgary, Alberta. I have children, similiar in age of yours: 3 boys, Scott (7), Logan (4) and Cole, who is 4 months.
Cole was diagnosised in utero also, but with a different problem then yours, he does not have down syndrome or trisomy 18.
I ended up having an amino around 35 weeks, to test for lung maturity, to see when they would deliver. We delivered in Edmonton,
by c-section, so I could be close to the surgeon, as Cole did have his first surgery at two days old. The only thing, about
Edmonton, was I delivered at the Royal Alexander, but no NICU for babies, so Cole was transferred over to U of A hospital
(no maternity -stupid cut backs!), and I went for day passes to see him. The staff is excellent, but you can see how health
care is effected with shorter of nurses or beds. We didn't know a soul in Edmonton, but luckly at the last minute a good friend,
pull through and we stayed at her sister's. You should check into any funding the province may have, as in Alberta, "Children
with Special Needs" which paid for meals, km's, and lodging. Ronald McDonald house, we never stayed in, as we were about too,
but then got transferred back on airplane to Calgary. Don't be afraid to ask, if you can go on the plane, too! Is there a
chance you end up in Calgary? In Edmonton, the pediatric surgeon Dr. Ivan Rebeyak, is remarkable!! We are very lucky! Many
comment, that he is one of the best in North America. He recently did a heart transplant on a 24 day old child. Cole, has
already had two surgeries, by him. I had a lot more emotional ups and downs before his birth, but I do believe it helped me
become better in knowing what to expect beforehand. Please keep us updated on your progress.
Christina
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Post: January 10, 2001 - More questions.
Thank you for answering my post so quickly.Tricuspid atresia is one of the terms I have heard but there have been so many
I am only now starting to figure out what they all mean. I read some of the things you have written about on the old boards.
You talked about a cath, I assume that means catheter but what exactly is that and why do they do it? Also you said your son
was born early and that too seems to have happened with a lot of the babies talked about on the boards ,is premature birth
common for babies with heart defects? Thank you again for responding to my questions.
Pam
Replies:
January 12, 2001 - Jellybeans25
I'm new on this board, too. I've tried emailing you, through your ivillage account, you may figure how to retreive it,
like I did , at the bottom of the main page, check out email. Yes, Dr. Rebeyak, the pediatric heart surgeon, is the only one
in Alberta! When we were there, he had another fellow, who assisted (not sure his exact speciality) who was from Japan -he
was a little hard to understand with his accent, though. There are none in Sask, or Manitoba. I asked our cardiologist, and
in her opinion, if I couldn't of gone to Edmonton, she would of sent us to Montreal, to get the same quality. Dr. Rebeyak,
was at Toronto Sick kids, before Alberta, he was been here since 1996. I wrote him a note, and he even wrote back,
and I heard that Dr. Rebeyak, even search out a boy who wrote him a thank you note, so he could write him back. My husband,Mike
never met him, as he always went out of the NICU or the PICU, for a bathroom break, and missed him! I taped him on the news
recently, I could always make a copy for you, and mail it. You will be in excellent care! My cardiologist, said, he gives
those, that "shouldn't even be alive, a chance, he will even work until every cell is dead, even if he has to add that
child to his mortality list, death is not in his vocabulary". Do not fret about the surgeon, and the nurses are very
good at explaining everything, too.
-Christina (bring more sunshine this way, when you come back from California, I like this mild week of winter)
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Post: January 11,2001 - Pam.T again
I have never written to anyone on the net before and still don't quite understand how everything on the boards works. I
tried to respond to everyone who wrote to me on the old board but only one message went through, the rest of you I tried to
find on the new board to write to you there and then my brain kicked in and I realized I could post a new message without
adding onto to other people's messages. I would just like to thank you all for your kind thoughts and wishes, finding this
group and reading your stories has made me feel so much more hopeful than I did before. And thank you Christina for all the
info on Edmonton. The Doctors at our last visit didn't go into details about what having the baby there would mean they said
that was something we would discuss in February. I can't belive you have to be seperated from your baby. I love living here
in Canada and having been raised in Alabama only seeing the Doctor twice as a child because we had no health coverage I have
always thought government run health care was amazing but now I am beginning to have my doubts. I am glad to hear there is
such an amazing surgeon there. Does he do all the pediatric heart surgeries? I have quite a few other questions to ask you
but it is very late and I must get to bed. I'll write to you again soon.
Pam
Replies:
January 20, 2001 - Daschwab
Just checking on you, has the doctor said anymore about the babies heart? Have you had anymore fetal echos. I hope you
are dealing with this ok, I had a really hard time when I was pregnant knowing in advance. For the baby it IS better to know
before hand, I had about 15 people in the delivery room with me, but for the mother, knowing is not as good, I just tried
to find out everything I could about Tricuspid Atresia, and the ladies and men on this board helped ALOT. They were so supportive,
I knew no one with a heart condition, so they could relate. If you need anyone to talk to please email.I hope things
are going well,
Stacey and Dylan almost 8 months with Tricuspid Atresia.
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Post: February 3, 2001 - We finally got the PC's report.
Hi again and thank you to all of you who have written me and given me such support over the last few weeks. I saw my family
doctor this week and he finally had the report from the PC from the ultrasound I had at 20 weeks(I'm 27 weeks now). I had
to type it all out to send to my Mom so I thought I would also copy it to you guys to see if you had any comments. "Thank
you for asking me to see this young woman to check the anatomy of her fetal heart. She is currently about 20 weeks gestation.
I agree that the right ventricle is small and I think there may be tricuspid atresia. I think the great arteries are normally
related. I would anticipate that the baby will need some type of surgery, probably in the first month of life, likely a systemic
to pulmonary shunt. Today the fetal heart was in sinus rhythm. It was normally orientated on the left side of the chest. THe
right ventricle is significantly smaller than the left and I thought the tricuspid valve was probably atretic. The great arteries
seem normally related. The pulmonary artery seemed a little small. " My next appointment is February 15th, any advice or comments
would be greatly appreciated.
Pam
Replies:
February 3, 2001 - Jayell2000
It is kind of good news, though heart defects are never really *good* news. I'm sorry that they have found anything wrong
at all. I know how hard that must be for you right now. On the positive side, at least from what I read, your baby can really
be helped. If the diagnosis is hypoplastic right ventricle, and some kind of pulmonary or tricuspid atresia or hypoplastic
condition, this can helped. In milder cases it can even be corrected. Sometimes the baby does so well that surgery can be
delayed. But what is key is the degree of hypoplastic (smallness) of the right ventricle, and the condition of the valves
going into, as well as the pulmonary ateries, at least in my experience. In theory, you can be missing the entire right ventricle
and still be saved with a Fontan surgery. The aim with hypoplastic right ventricles is to sustain the baby with an inital
shunt surgery, correct any blockage into or valve problems with that ventricle, and then hope for growth. If the baby continues
to be cyanotic usually a bi directional Glenn surgery is next, and if the rv still does not aid in circulation, a Fontan is
usually next. The first surgery is usually in the first month, the second between 6 and 9 months, and the third between 2
and 3 years.
You probably won't know for awhile the exact details of your baby's diagnosis, but so far it sounds very treatable. That
really is good, even though the issue as a whole is devestating.
I hope any of this helps. Please go over it all when you see the pediatric cardiologist, as s/he will know best what your
particular child will need.
I hope you keep posting here! I'll be thinking of you.
Jayell (James 4, HRHS, pulmonary atresia, ebsteins anomaly, ASD)
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Post: February 4, 2001 - Reply to Jayell
Thanks Jayelle, Reading posts such as yours definitely does help. When we met with the PC and perinatologist back in December
everything was so new to us we had tons of questions but didn't understand everything well enough to ask them in such a way
as to get any real response from the doctors other than "this is a very serious condition, we won't know the extent of the
problem until the baby is bigger, and she will probably need immediate surgery". Having someone who has actually gone through
this give me information and advice really means a lot. After reading all of the stories on the boards as well as the direct
posts that were made to me concerning my situation I feel much more prepared for our next visit. I check the board almost
everyday and learn something new each time I do. Thank you again for your concern and support. I will let everyone know what
we find out at the next ultrasound on the 15th.
Pam
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Post: February 16, 2001 - Happy,sad,worried,and grateful all at once.
Hi everyone, we met with the pc and perinatologist again yesterday. They basically just confirmed what they said back in
December. Our baby is definitely a girl. Her right ventricle is hypoplastic (even I could see how much smaller it was than
the left side). They see "something" where the tricuspid valve should be but it is not functioning as a valve and there is
almost no blood flow to her lungs. They also could not see a pulmonary artery but said that could just have been her positioning.
We did get a good look at her aortic arch and they seemed very pleased with what it looked like, apparently it is normal size
and they could see lots of vessels coming off of it. Other than her heart everything else looks fine, she is a good size and
my fluid levels are good. I know I should be very happy as this is really the best news we could have received but I am more
depressed now than I was before we went. I think that even though it was irrational I was really hopeing that when we went
yesterday they would say the original diagnosis was a mistake and now that she was bigger they could see her heart was really
just fine.Yesterdays appointment has just made things too real for me right now. I am sure in a few days it'll all sink in
and I'll be better(at least my house will be very clean as cleaning is what I do when I am upset). They also told us yesterday
that we will definitely be delivering in Edmonton as they expect her to need a BT shunt within the first week after
birth and there are no surgeons here is Saskatchewan. I have heard good things from others on the board about the surgeon
there. I know several of you have gone throgh this surgery if you know of any side effects you can warn me about or can think
of any questions I should ask beforehand I would greatly appreciate your advice. Thank you all again for your support.And
please forgive me if I sound whiney I really am grateful that the things we learned yesterday are as good as they are.
Pam
Replies:
February 16, 2001 - Anshamom
I am so glad that your little girl's heart is not worse than they originally thought, but that doesn't make it any easier
to deal with what *is* wrong with it. I have to confess that I still harbor fantasies about going to a PC checkup and hearing,
"IT'S A MIRACLE! Shawn's heart is whole!" I still imagine this happening almost 3 years after he was born and 4 surgeries
later! But you know, no one who sees him would ever guess that his heart is so messed up. He is just so full of life, laughter,
and joy. Every day with him reminds me that miracles do happen -- he is a walking miracle.
Hang in there -- I can only imagine how tough it is to know your sweet one will be born "sick." I was "blissfully" unaware
of Shawn's problems until he was 6 weeks old, so I didn't worry a day during my pregnancy. But as you know, several moms here
had babies diagnosed in utero, so they *really* know how you feel.
Hugs and prayers
Susan and Shawn (4/98, Double Inlet Left Ventricle, no right vent., transposition, VSD, Fontan 10/99)
February 17, 2001 - Cammythom
Preg. with Danielle 25 weeks in utero with Ebstein's Anomaly
Pam, I am so sorry you are going through this. I understand completely what you are going through since I too am pregnant
with a baby with a severe heart defect diagnosed at 20 weeks in utero. The waiting is so hard. I long to hear that "your baby's
fine, what's all the fuss?" Danielle has a tricuspid valve that is not functioning correctly and her pulmonary valve is not
opening to allow bloodflow to the lungs. Her heart is taking up her whole chest and crushing her lungs. She also has congestive
heart failure and her prognosis is not positive. She too will need a B-T shunt if she makes it to term. Even though I wouldn't
wish this situation on my worst enemy, it is comforting to know that I am not the only one going through this. I will pray
for both of our babies.
Cammy
Post: February 17, 2001 - To Cammy
Cammy,
Thanks for your post. I have been following your story on the board. Aren't the people here amazing. I think I would be
totally nuts by now if not for all the positive things I have read here. At the ultrasound on Thursday they said I was 28.4
weeks so I guess I am just a bit ahead of you (my due date is May 5). Another Mom on the board who found out about her child's
problem at her 20 week ultrasound told me that knowing ahead of time is better for the babies but harder for the Moms. I have
certainly found that to be true. I have always enjoyed being pregnant ( I have three older children) and with the others my
husband and I even looked forward to the whole birthing process but this time I am truly scared of what is going to happen
once she is born. My Doctors seem more optimistic than yours but I honestly don't feel comfortable with what they have told
us. Our PC is very old, which I know can be a positive thing as he has tons of experience but he also seems to have a really
hard time understanding what exactly he is seeing on the ultrasound screen and the perinatologist is very patronizing.At our
first ultrasound when we asked him if there was a name for out daughters condition so we could do some research on our own
he actually told us researching ourselves was pointless as he and the pc were the specialists and knew way more about this
type of thing than we could ever find out on our own. At this last appointmentI was much more aware of how the heart works
and what the different surgeries are (thanks to this board) so I was able to get more information from them but I still don't
feel comfortable unfortunately a second opinion is not an option here. We will be meeting with the Doctors in Edmonton who
will do the surgery sometime in the next few weeks to see what they think. I have heard good things about them from others
on the board so I am hoping I will feel better after meeting them. I'm sorry I just meant to write you a thank you
post and ended up venting instead. I do appreciate you writing to me and feel the same as you do that though this is terrible
it is good to know you are not alone. I will be following your story and will keep you posted about anything I find out that
might be of help to you.
Pam
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Post: March 15, 2001 - Update Pam.T with baby girl 33 weeks in utero TA,Hypoplastic Right Vent, VSD
Hi Everyone, We went to Edmonton this week and met with all those who will be involved in the birth and care of our daughter.
We found the staff to be more wonderful than we could have ever hoped for. The specialists and equipment in Edmonton seemed
far superior to what we have experienced here so we are feeling much better about the information we have been given. We had
one ultrasound done at the perinatal clinic at the Royal Alexandra hospital where everything (except her heart) was checked
in great detail. In all respects she seems perfect and already weighs four and a half pounds. We went the next day
to the pediatric cardiology unit at the University of Alberta hospital for a fetal echo which ended with a diagnosis of hypoplastic
right ventricle, tricuspid atresia and a vsd. Her pulmonary artery seemed to be almost the right size they were assuming because
of the vsd as almost no blood appears to be crossing the tricuspid valve. Does that last sentence sound right? I am afraid
I may be confusing terms. Anyway, they still want me to deliver in Edmonton but it looks as though we may(fingers crossed)
be able to skip the first surgery (either a BT shunt or a band) depending on the size of her VSD. While in Edmonton we also
met with the potential surgeon named Dr. Rebeyka. I was introduced as "a mother who has done a lot of research and is very
knowledgable in the workings of her daughters heart" something I can thank all of you here on the board for. I have learned
so much from you already and look forward to gleaning more information from your experiences in the future. We were told that
surgeries aside the biggest issue facing our daughter will be feeding and weight gain. In reading the board today I found
many encouraging remarks and great ideas regarding this issue. I exclusively breastfed my three other children and find the
idea of not being able to do the same for this one hard to fathom. My three other children never had a bottle, we went straight
from the breast to a sippy cup but they were very attached to their soothers (pacifier, binky, whatever you want to call it)until
after they stopped nursing at between 12 and 14 months. I am curious as to whether any of you have had children who used soothers
as nipple confusion seems to be a big issue with heart babies. Thanks again for all your advice and encouragement.
Altough I am still scared to death by the idea of what we have to face in the next few months I am very grateful to have found
out early and to have found all of you and been able to learn from your stories.
Pam.T
Replies:
March 15, 2001 - Dwhitmeyer - Glad You Like your Dr.'s
Pam,
That is wonderful that you are meeting your Dr.'s and feel comfortable with them already--that is so important.
When my dd had her first surgery it was all a whirlwind and we didn't know anything about heart defects and we didn't know
the Dr.'s. Now that my dd just had her 2nd surgery it was nice to have the same Dr.'s and nurses we already knew. It was still
scary, but I was a lot more educated going into this one.
I had to exclusively pump instead of nursing, and that was difficult. I think you do what is best for your child. My dd
was NG-tube fed for a long time and now has a G-tube. I finally got to the point where I said who cares how she eats as long
as she gains the weight, which was our biggest goal. I'm sorry that you have to go through this, but I think it's great you
know what you are dealing with from the beginning.
Good Luck to you!
Stacey mom to Brady 2 1/2 HH and Lindsey 7 mos. repaired VSD, Stenosis of Rt. Aorta, L and R CA, LPA, G-tube fed.
March 16, 2001 - Paulette Marie - Sounds like everything is going well.
With David I nursed him after birth (didn't know about his heart defect until later) and that night, but by that night
he didn't want to nurse much.
After he was put in NICU I started pumping and the hospital fed him my breastmilk through the ng tube. 2 weeks after surgery
the lactation consultant helped me nurse him. He would tire quickly so I would only do it a few minutes and then give him
a bottle of breastmilk. Eventually, his strength increased and I breastfed him exclusively until he was about 4 1/2 months
old. Then he had another surgery and with everything going on, I lost most of my milk. He didn't do well on formula so we
made him our own "formula" with a recipe from a dietician. His weight picked up instantly and he was like another child. Both
Drs. noticed at his next appointment and were amazed. He's been in the 90th percentile almost since birth.
Don't expect too much encouragement from the Drs. on breastfeeding after surgery though. When I told them that's what I
was going to do, they in so many words said they expected me to fail.
Oh, and nipple confusion was never a problem for us even though he had a pacifier from day one. Only one of my children
didn't want to take a bottle after nursing and through experimentation we finally figured out she would take the Playtex orthodontic
nipple that goes on the bottles with the bags. Must be the closest to the real thing:o)
Good luck with everything. It's a great complement when the drs. introduce you as being well-informed! According to a nurse
friend of ours, they really respect that.
Paulette w/ Grace(7), David(4-HLHS)& Rachel(22 months)
March 16, 2001 - Julieinkc
My son was born with PA w/o VSD and Hypoplastic right vent.With Atley, his pulmonary valve was perfectly formed, but fused
shut. We didn't know about this until after his birth. He had open-heart surgery to open his pulmonary valve and place a B-T
shunt (no VSD) when he was 24 hours old. The surgery was rough, but it was amazing how is right vent recovered. Now, I understand
that usually TA causes a much more severe hypoplastic right vent, but Atley's has recovered quite a bit.
As far as feeding problems, we have a lot of them. However, Atley was on a ventilator for 2 months and never learned to
eat. Also, he was so weak when he came off the vent, I could never nurse him. He has been tube fed his entire life.
I don't think this is typical, though. His twin sister was a great nurser and could easily switch from a pacifier, bottle
to the breast with no nipple confusion.
Good luck to you!
- julie 10 month old DD Parker and DS Atley (PA-IVS/pulmonary valvotomy and B-T shunt 04-00/takedown of B-T shunt 05-00/severe
reflux/fundoplication 11-00/g-tube/FTT) 5 year old DD Keller
March 17, 2001 - Elf333
It's so wonderful that you were impressed by everyone that you met, besides their expertise in the field, that will make
all the difference in the world when you are going through all of this!
Breast feeding is a big and a very debateable (?) with these heart babies~as I have come to find out. You should let them
know up front, if you haven't already, what your wishes are just so that they are aware. A number of times, when Avery was
going to start eating (through the NG at first~very routine)~the docs on rounds would say, start them on however much nutramigen,
etc. And a nurse would pipe up and say "the mother wants to breast feed". A lot of times, they will be completely unaware
or will forget. As you know, it is best for the baby, especially these babies who go through so much.
Avery came home with an NG tube unfortunately, but only for a short while. I had been pumping the whole month he was in
the hospital, he had some eating issues~~like not being able to handle eating, he kept throwing up, etc. And they told me
he was allergic to my milk. Sorry I'm rambling.....to make a long story a little shorter, I kept on pumping and was eventually
BF him by 2 months I think. Avery is almost a year now and is still BF!!! As for the nipple confusion, he has had a binky
since day one...it has helped out tremendously, as he wasn't able to eat for so long. So, no confusion as far as the binky
and BF, although he frowns upon a bottle.
I hope everything goes well for you. You sound so well informed and that's wonderful, there's so much to learn about all
this and I'm learning more than I ever wanted to know!
Ellie and Avery (4-13-00~~HLHS)
March 23, 2001 - Cvantien
Hi Pam,
My second baby was born with tricuspid atresia, VSD and transposition. I nursed my first son until he was 15.5 months old
and had already decided to nurse the second one for the same reasons. As he was born at term he didn't have any real problems
learning how to nurse although it did take a little longer to be allowed to latch him on as he had a surgery the day
he was born (balloon septotostomy, his ASD was too small) and was on reduced fluids due to the general anaesthetic.
We had to teach him how to suck before he could learn to latch and the nurses in the NICU told me that in the long run it
was better for him to learn to suck on a pacifier than to not suck at all so I gave him a pacifier. He still uses one and
has had no problems gaining weight and thriving. At nearly 3 months he had more than doubled his birth weight and at nearly
6 months we are still exclusively nursing. I think the key is how tired they get as nursing can take a lot more energy than
bottle feeding, but if you are willing to work with your baby and nurse as frequently as necessary then you shouldn't really
have too much trouble.
By the way, the only reason my son has had two surgeries to date is due to the transposition, so it's not uncommon to have
a TA baby that hasn't had surgery before they are 6 months old. Our surgeon told me that the older they are the happier the
surgeon is but there is a limit to how long they will leave the surgeries because they don't want the heart to get too big
and work too hard as it can cause problems in puberty and later years.
Good luck with everything, I hope the delivery goes well. Finding a medical team you are comfortable with is a great start!
Post: March 17, 2001 - Thanks again for all of your support and advice.
I am constantly amazed by all the information I gain from this board. I couldn't be as positive and sane about all this
without your help.
Pam
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Post: April 28, 2001 - Epsteins Anomaly or Tricupid Atresia?
Hi Everyone,
I just had my last ultrasound and checkup before the transfer to Edmonton on Tuesday. At the ultrasound appointment this
time I had student, it took quite awhile for the doctor to arrive so I spent some time discussing what I have been told so
far with her regarding Annalise's heart. She said "so Ebstein's Anomaly right?" I realize this was just a student I was talking
with and the equipment here is over ten years old so she didn't have the best of pictures to look at but her thinking it was
Ebsteins has now got me to thinking. I have heard the Doctors say that they see something on the ultrasound where her tricuspid
valve should be but it is not functioning as a valve. From what I have been able to find on the net that sounds more like
Ebsteins to me than Tricuspid Atresia which I thought meant there was a valve but it was fused shut.I know Cammy's
Danielle has been diagnosed with Ebsteins, her experience has been very different from ours. As I said we leave Tuesday for
Edmonton where the equipment, Doctors, etc are much better than here so I am sure they will be able to tell me more but I
would like to know what kind of questions I should be asking. You guys no way more about this stuff than I do, any thoughts?
Pam
Replies:
April 28 , 2001 - Wynelle
Hi Pam, not sure about the differences, I've always meant to do some research on Ebstein's. Christopher has tricuspid atresia,
that's his only anomalie besides an ASD (his VSD closed spontaneously). I understand that there are a series of anomalies
with Ebstein's. Christopher's Tricuspid valve is small or underdeveloped and doesn't perform, which in turn has made his right
ventrical underdeveloped. This is what I was told. So as far as I know the Tricuspid valve doesn't have to be closed or fused
it can be missing or just underdeveloped.
Love to hear about you've figured out! Hugs, Shellye & Christopher (tricuspid atresia) & Baby Evan
April 28, 2001 - Jayell2000 - Epsteins or TA - YES we have there!!!!
Hi Pam,
When James was born he was diagnosed with tricuspid atresia (along with HRHS, and pulmonary atresia,and an ASD). During
his first surgery at 2 weeks old, for a bt shunt, the surgeon said it was basically tricuspid atresia...they tried to open
up the area where the valve should have been, hoping something would grow but weren't too positive.
Even after his Glenn at 12 months old, his diagnosis stayed at tricuspid atresia. Basically there was a little something
there, some tissue and a tiny opening, but nothing like a valve.
We waited along time before going in for the Fontan. We had sort of given up on his rv growing or his valves, but wanted
him to have as much time as he safely could before bypassing them with the Fontan. During the surgery for the Fontan, the
surgeon said he saw something that made him want to go in and look around at his rv and valves one more time before bypassing
them. He told us afterwards that when he got in there he re diagnosed James as having Ebsteins anomaly (he was 4 by this time).
He was trilled because over the years it had grown enough to finally be seen more easily. It had more definition I guess.
Because ebsteins involves leaflets that are stuck and fused or mishappen, you can sometimes still work with them. James had
leaflets, and after they unstuck them, and reshaped them, and used scar tissue from the inside of his rv (which was also much
bigger than before...roughly half the normal size)to form new chordae for the leaflets (they had none), they managed to get
his tricuspid valve working for the first time. The surgeon said during the first surgeries, it was just so tiny, a few millimeters,
they couldn't define it or work with it. It was still half sized but big enough to finally see.
So for us it was good news to get the diagnosis of ebsteins anomaly. It took James along time to grow what he did have
big enough to be used...and because it is unusual these days to wait until 4 for to do the Fontan, it is unusual to change
the diagnosis at this age.
If your baby has *something* there, they may try to enhance that during a bt shunt surgery, if your baby needs that surgery.
I can honestly say that increadible change can happen if a child is stable enough to be given some time. James rv handles
half the normal blood flow now. The other half still passes through his glenn set up. But this was more than we had hoped
for and all I can say is to get many opinions about your baby's final diagnosis.
**HUGS**
Jayell
April 28, 2001 - Julieinkc
I read up on this some after I "met" Cammy and here is what I found. I have read that with TA there are many ways the valve
can be imperforate - the leaflets of the valve may be formed but tightly stuck to each other, or may not be formed at all,
with muscle tissue of the heart forming a wall where the valve should have been. (It's the same thing as in PA - we were lucky
that Atley had the tricuspid valve stuck together, and when it was opened it is functional.)
Ebstein's Anomaly is characterized by displacement of the tricuspid valve. The tricuspid valve is not in its usual location,
and is further displaced downward in the right ventricle towards the muscle.
In this condition some of the right ventricle muscle is lost and is replaced by a fiborus thin wall. Therefore the contraction
of the right ventricle is affected to the degree of that displacement - in other words the more the wall of the tricuspid
valve is displaced towards the apex of the right ventricle the more that ventricle will be weak.
Also, Ebstein's Anomaly is associated with the presence of an electric connection between the right atrium and right ventricle
via a bundle called Bundle on Kent. This makes the electric impulse bypass its usual course. This predisposes the child to
have a condition called Wolf Parkinson White Syndrome (WPW) and Supraventricular Tachycardia.
Hope this helps.
- julie 1 year old DD Parker and DS Atley (HRHS/PA-IVS/failed balloon valvoplasty 04-00/pulmonary valvotomy & placement
of B-T shunt 04-00/takedown of B-T shunt 05-00/severe reflux/fundoplication 11-00/g-tube/FTT) 5 year old DD Keller
April 30, 2001 - Cammythom
I have had more than my share of echocardiographs this pregnancy with Danielle. Ebstein's/tricuspid dysplasia is seen on
the screen as a elongated, downwardly displaced valve that flaps around. The right atria is usually enlarged and the right
ventricle may or may not be visable as the valve is displaced into it and may actually be atrialized (contract with the atria).
Heart arrythmnia is common. Due to the size of the heart, lungs can be very small and this is of concern because the baby
may not be adequately ventilate once born. I can't offer much about tricuspid atresia at this time.
I would definately ask what the corrective surgery entails. There is much controversary on the "right" procedure to correct
Ebsteins/tricuspid valve defect. I chose Dr. Knott-Craig at Children's Hospital of Oklahoma because he developed his own procedure
that has saved 7 out of 8 babies he has operated on. He turns the tricuspid vavle (3 flaps) and changes it to a monocuspid
valve (1 flap). Three of his patients are now over the age of 6 and haven't required additional surgery, all are on no medications
and are in sinus rhythmn. I just saw a picture of 6 of these babies with Dr. Knott-Craig at a x-mas party he had
and they all looked healthy and happy.
I would ask about long term prognosis with the procedure recommended, whether multiple surgeries will be required, whether
the heart will function as a normal 4 chamber heart (ie repair the defect.) What to expect when the baby is born, ie will
she be cyanotic, limp, etc. Can the baby go through a vaginal delivery or would a c-section be needed? I am running out of
time, but I will try to write with more questions.
I hope this helps,
Cammy
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Post: April 29, 2001 - Thanks for all the info guys!
I am going to be doing a lot more studying the next few days. I know we won't know anything for certain until they can
test her after she is born (and from your experiences even then nothing is certain) but I want to be as prepared as possible
for her diagnosis so that when they are talking I have some idea what they are talking about. I am sure I will have many more
questions for you in the future. Thanks again for your help. Pam
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Post: May 03, 2001
Hi Everyone,
We arrived in Edmonton on Monday. I was having an awful lot of Braxton Hicks the two days before and all during the drive
here which had me very paranoid ( I really didin't want my husband to be delivering on the side of the highway) but obviously
everything worked out and I haven't had the baby yet. I saw my ob/gyn yesterday, she was going to do a cervical exam and "run
her finger around the cervix" which apparently often induces labor until I reminded her the surgeon was supposed to be away
from May3-5. She checked and sure enough he was leaving today for a conference and won't be back until Saturday so she decided
not to risk a cervical exam and has arranged for me to call the hospital on Monday. They plan to check me then and if things
are like they were at this stage of the pregnancy with my last two babies, all they will have to do is break my water to get
things going. We are staying at the Ronald McDonald house here in Edmonton which is wonderful . I spent all day yesterday
shopping so my husband declared today a "rest" day. I am starting to go nuts though so I think we are going to go shop some
more. Thank you all for your well-wishes, thoughts and prayers. I'll let you know when we find out more. Pam
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Post: May 05, 2001 - Hi Guys
Friday we went to the University hospital (where the baby will be)to meet with the person subing for our our social worker
(she went on holdidays until June) to give her a list of homeopathic medications from our natropathic physician that we might
want to give to the baby after she is born. We wanted to clear them with the Doctors there to ensure there would be no contraindications
with any medications they are planning on giving the her. Anyway since we have not met with cardiology since arriving in Edmonton
I asked the social worker to check and see if they would like to see me as the plan from the Royal Alex(where I will deliver)
was to induce me on MOnday if I hadn't had the baby before. She went to check and found out that cariology had no idea they
were planning on inducing me and that the surgeon is away until late Wednesday as opposed to Saturday which is what they were
told at the Alex. They plan on giving her prostaglandin anyway so if I go into labor before wednesday they say she should
be fine until he is back but there is no point in inducing me knowing he is gone. I have heard you all say many times that
we have to be responsible for ourselves and our children and to question everything. I am so glad I listened. Today is my
actual due date so she is officially full term. At an ultrasound I had two weeks ago they told me she weighed almost 7 pounds.
I guess the longer we wait the bigger she will be and I know that's a good thing the only bad thing is the longer we wait
the longer we are going to be away from the other kids whom I miss terribly. My husband is being wonderful and suffering through
shopping, showhomes and bookstores to keep me occupied. Thanks again for all your support.
Pam
Replies:
May 05, 2001 - Lillybop
You really do need to be aware of EVERYthing that goes on and make sure it makes sense to you. Even with the best hosptials,
there are so many people involved that things could get confusing for anyone. Too many people accept (or expect) that medical
personnel know exactly what they are doing. You are the consumer, and you have the right to question every move made.
Hoping the best for you! Please keep us posted if you can. we're thinking about you!!! dawn and lily
May 06, 2001 - Daschwab
Pam you are doing such a great job with all this it is so much to take in but you have it all together, please keep us
updated and we are all praying for an uneventful delivery. Keep the faith it gets you through everything,
Stacey and Dylan TA almost 1 year old
May 07, 2001 - Jellybeans25
So glad you keep us informed. We just returned from the hospital today from Cole's bowel surgery. I've been hanging out
since Wed at the hospital. I checked in last night, at the nurse's station, to see where your progress was. That is one thing
in Edmonton, I did find that the lack of communication was a bit fuzzy. So, glad you're hanging in! Each ounce counts when
in comes to surgery. Hope everything goes well there, and back at home with your children.
Christina and Cole
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Post: May 08, 2001 - Heart Cath questions.
Hello Everyone, Still no baby but the surgeon is back in town tomorrow,
back at work on Thursday so unless she decides to come on her own between now and then I am suppose to call the hospital induction
room at 6am Thursday and hope they have room for me. I have a question about heart caths, we were told she will be having
one to assess her heart shortly after birth. Who usually does this, the surgeon or the cardiologist? and how long after birth
before they usually do it? From some of the posts I have read lately this seems like a much more complicated procedure than
I was led to belive your experiences would be greatly apppreciated.
Pam.t
Replies:
May 08, 2001 - Lilybop
Those last few weeks are so long and yucky! ;) Our cardiologist did Lily's cath. There are several at the hospital, and
it is their "speciality". Others specialize in ECHOS, med. management, etc. It takes several hours from start to finish (without
complications), and the kids are under general. The risk is relatively low(althought I believe it is considered surgery),
and the doctors will get an excellent picture of what is happening in baby's heart. Some problems can be fixed with devices
during a cath.
I think about you each day! It sounds like you are in a wonderful place that is taking good care of you and your baby.
Hope all goes well. We're pulling for you! dawn
May 09, 2001 - Julieinkc
I agree, and a suggeston on something to check out before the cath.
Atley has had 2 caths. The second one took 5 hours! However, they took me back and showed me all the film of the cath and
it was amazing. They really help the docs figure out what is happening. The cardiologists that specialize in caths do them
at our hospital, and not the surgeon.
However, I would suggest you find out if the surgeon is available or how quickly he can be there if anything goes wrong.
I don't think it happens very often, but it did to us. Atley's cath when he was 18 hours old went horribly wrong when the
cardiologist poked two holes in Atley's heart, which caused bleeding and then his blood pressure to crash. The cardic surgeon
was called in and he had open heart surgery at 10:00 p.m., which lasted several hours. It was scary, but they performed the
valvotomy and put in the B-T shunt when they patched the holes.
I'm sure everything will go smoothly. I'm looking forward to some positive news soon! - julie 1 year old DD Parker and
DS Atley (HRHS/PA-IVS/failed balloon valvoplasty 04-00/pulmonary valvotomy and B-T shunt 04-00/takedown of B-T shunt 05-00/congenital
pectus excavatum - unrepaired/severe reflux/fundoplication 11-00/g-tube/FTT) 5 year old DD Keller
May 09, 2001 - Andshamom
Hope I didn't scare you by whining about Shawn's upcoming cath. It's just that we have been out of major "heart patient"
mode since Oct. 99, so when we have to start thinking about it again, it's scary. All Shawn's caths have gone fine (all done
by his cardiologist and all a few hours long). The cath is the best way for the docs to figure out exactly what is going on
inside the heart -- heart function, blood flow/pressure, measurements of various parts, etc.
Hope all is well!
Susan
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Post: May 11, 2001 - Shes Here!!!
Sorry guys I've been a bit busy. My water broke at just after 1:00 on Wednesday night. We went straight to the hospital
where they asked me to basically do nothing to encourage labor as everyone who needed to be there doesn't come in until 8:00.
So we basically just waited (sleep was not a possibility) Once I got up and walking at 8:00 I started having contractions
but they would stop as soon as I sat down so they ended up putting me on the drip at around 11:00 this helped get things going
more regularly and she was born at 12:22 weighing 7 pounds 15 ounces and looking the most beautiful shade of pink I have ever
seen. (She also has quite a bit of black hair which was a pleasant change for us). They let me hold her while they got everything
ready for the transfer and then my husband went with her to the University Hospital. (they wanted me to stay put until suppertime)
My husband said they did lots of tests but he hadn't done the research that I have so he's not sure what they all are. One
was definitely anl echo. The cardiologist told him she has a classic case of TA with absolutely nothing where the valve should
be. (I haven't been able to see the cariologist yet as thye have been admitting heart babies here like crazy the last two
days)Anyway they started her on .05 of prostin, they decreased that yesterday morning to .03 and this morning to .02. They
are hoping to have her off it completely within the next couple of days. Right now her o2 sats are staying in the high 90's
to 100 but her respiration is quite rapid which has me a bit concerned. She has had 4 apnea spells due to the prostin but
she started breathing again on her own each time so for now we have avoided being intubated. If her sats stay good after the
prostin is off (they have told us this is what they expect) then they say we should be able to take her home and wait until
time for the Glenn when she is 5-6 months old(fingers crossed) I am able to hold her at this point which I do until my bum
is so entirely numb have no choice but to put her back. I don't know about the cath yet, the nurses have said cardiology won't
really be too involved with her until she is completely off the prostin. Thanks for the advice from everyone about caths above.
I'll write more later when I have more time. Thanks again for all your prayers and support. (Has anyone heard anything about
Cammy?) Pam
Replies:
(I received many replies of congratulations regarding this post but out of respect for those of you who have read this
far I will not list them all. Just know they were all appreciated. )Pam
Post: May 14, 2001 - Update on Anna
First of all thank you Christina and Cole for the lovely picture frame. It was such a pleasant surprise and will look wonderful
in our new house. Your thoughtfulness overwhelms me. I hope I will someday be able to help others in the way you have helped
us. Now for the news on Anna,she had an echo on Friday which showed her pda to be quite large and still wide open. They stopped
the prostin Saturday morning, since then we have just been waiting to see what will happen. Yesterday her sats dropped a bit
from between 97 and 100 to the low 90's so I am assuming her pda has closed at least a bit. Her respiration can still be quite
high but averages out to be I think in the high 60's or low 70's. Her weight was down significantly from her birth weight
but they had her fluids restricted. They started feeding her my expressed milk through and ng tube on Saturday and yesterday
she finally started gaining rather than losing. I also nursed her for the first time last night. They worked her up to full
continous feeds today and she did nothing but sleep. I did nurse her again this morning but I had to go for a check up in
the afternoon, she was asleep when I came back at 3:30 and was still asleep at 6:30 so we turned off the ng tube and by 7:30
she was up and hungry. I nursed her for a good long while this time. She is still receiving sugar and fat through an iv in
her hand but they said if she blows the vein they won't put in another one, if vein stays good they'll probably keep it another
day. She looks so good now that she is gaining some weight back it is hard to believe anything is wrong with her. I wish I
could just bring her home but I am trying to prepare myself for things to change and her to need the bt shunt or a pulmonary
band which would mean being here quite a while longer. Thanks again for all the encouragement and support. Pam
Replies:
May 15, 2001 - Jellybeans25
Your welcomed! I'm anxiously waiting to hear every detail of Anna's progress. That is so good that you were able to nurse
her!! I had to wait 7 weeks, and felt like a cow, with all my pumping, but it was worth it!! Now, Cole won't even take a bottle!
Glad to hear that the scales are tipping up, hope it continues!! Will it depend on how well she'll gain weight, before they
decide they will do the surgery? Hoping that the IV will last another day or so and that she will continue to do well. Are
you staying at the Ronald McDonald House? Hope everyone at home, is doing okay, too. Thanks for keeping us updated!
Christina and Cole (who's cutting his 2 bottom teeth!)
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Post: May 20, 2001
- Anna is Home!!
We arrived home last night. We were moved from NICU to a private room on the pediatric cardiology floor on Tuesday so I
could stay with her to nurse her around the clock so I didn't leave the hospital until we were released Friday night.We spent
the night at Ronald McDonald house and drove home yesterday. She lost a lot of weight the first few days in NICU but when
we left the hospital on Friday she weighed 8.6 pounds (her birth weight was 7.15). They told us our real concern right now
is weight gain and getting her bigger for surgery. She is on no meds at this point and looks like any other baby. We will
be seeing a pediatric cardiologist from Sasktoon every two weeks as well as a pediatrition here at home who Edmonton sends
all their heart kids to. They told us the date for her surgery (Glenn) would depend on how she does but they are expecting
it to be around the time she is four months old. We have been told to keep on the look out for the following signs of failure
1, pooping out during feedings, 2, weight loss 3, breathlessness, 4, irritability 5, blueness. If you guys know of anything
else I should watch for please let me know. At this point she is very content, though she does seem a bit freaked by all the
attention from her brothers and sister. She did not sleep good the two nights I was with her at the hospital but last night
she woke only for feedings and went right back to sleep. Some of you have commented on how relaxed I am and most of the time
this is true but after two days at the hospital I was so tense I could hardly breathe. She was fussy at night and everyting
I did to try to calm her would set her monitors to beeping ( at one point I seriously considered throwing it against the wall).
I didn't want her to cry because she would burn more calories and our leaving was dependent on her weight. I was also worried
for the first time that my milk wasn't enough or wasn't rich enough, that she wasn't feeding enough or long enough etc, etc,
etc. When we walked out of the hospital I felt an almost physical sensation of weight lifting from my chest and I could breathe
for the first time in days. I can't imagine how I am going to be after surgery. How do you guys deal with all the stress?
I did figure out that if I put a sock on her foot her sat monitor didn't go off as much (the monitors beeping when all she
did was move was very stressful), any other hints you have for keeping the monitors quite please let me know. Anyway, I realize
I am rambling now and had better stop and get some sleep before I say something truly bizarre. I just wanted to thank you
all for your prayers and let you know how truly blessed we feel and how thankful I am to have this little girl home with us
and all of us together again as a family. I hope all is going as well for each of you this day. Pam
Replies:
May 20, 2001 - Lilybop
Congratulations Pam and Anna, we are so glad you are home. The signs of CHF are the same as we were told. I found myself
visiting our pediatrician more often than a "normal" baby because I just couldn't tell about her breathing. It's tough--you
and Anna haven't known each other long! Hope she continues to gain, and you and your family can enjoy her and not worry too
hard.
At the hospital, I had the nurses turn off whatever monitors they could bedside. (they kept running at the nurse's desk).
This way it let both me and Lily relax a bit better. While I was awake, though, I liked to keep my eye on them. If all was
going well, I also asked them to wait 6 hours instead of 4 at night between taking vitals. They were great about it. (in the
PICU they have to, of course.)
Please keep us updated! dawn
May 21, 2001 - Elf333
Pam, that is wonderful!!!...Most of those machines have a silence button on them! The nureses shouldn't mind at all if
you silence them!!! They are just so used to them.
I'm so happy you're all home!
Take care and enjoy it!
Ellie and Avery (4-13-00~HLHS)
May 21, 2001 - larawood
Good to hear, Good to hear...You will be stressed--that's a guarantee.I laughed when I read your sock over the pulseox
trick--we always did that too and the monitors will drive you crazy. But now you can learn to just look at Anna and you will
become very keen in noticing color changes or attitude changes. I am glad you are able to breastfeed (we never could) and
you can supplement with formula, making it a higher calorie concentration if you are worried about the weight gain. Sometimes
heart kids have trouble gaining weight anyway, even though they may not be in heart failure or have something wrong. We are
done with all surgeries and I still feed Ryan as many calories as I can get it because he burns them so fast! Good Luck--we
look forward to your updates!Lara and Ryan(19 months,almost 25lbs)HLHS,gtube
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Post: May 24, 2001 - Still doing great....
Hi Guys, Anna and I are both adjusting nicely to being home. She has put herself on a feeding schedule of every three to
four hours. I take her for her first pediatrician visit tomorrow so we'll see if she's still gaining or not. She looks to
me like she is. She sleeps great during the day but for three nights in a row she would only sleep if I was holding her. (My
bum was so sore I could hardly move yesterday). She sleeps in our room and we had her all bundled up and she always felt warm
but my husband suggested we put a hat on her last night as maybe she was fussy because her head was cold. That seems to have
been the problem. I put her down at 11:00 and she didn't wake up until 3:30. She finished eating by 4:00 and then slept until
he big brother came in and woke us up at 7:30. Needless to say I'm feeling pretty good today. Her brothers and sister love
her and are constantly in her face but she seems to be getting use to them. I think she might actually prefer her older brother
holding her over me. I took her to the school for show and tell yesterday. I stood in the front of the class so everyone could
see her but I explained that because we don't want her to get sick no one could touch her. The kids were all cool with that
but when I went to my husbands office afterwards I found the adults a little harder to control. I discovered that when a new
person walked up to her that if I put my hand over both her hands then I would have time to ask them to wash first before
touching her. Otherwise they immediately would go for her hands beforee I could stop them. No one seemed offended but they
also all decided not to hold her. I can see this might be something that is at times tricky. They said at the hospital that
we should try to keep her life as normal as possible and hand washing was the only suggestion they had for keeping her from
getting sick. We brought home a bunch of masks to use if someone in the family comes down with something though I figure by
the time you know you need a mask the germs have been around for awhile. What have you guys done to keep your kids healthy?
Thanks again for your help. Pam
Replies:
May 24, 2001 - mom phd
I think breasfeeding will also keep Anna healthy. I have breastfed Marielle (pumping at work) and she has only had one
cold in 7 months. She is also not in daycare which helps but her big brother is and he has brought home his share of bugs.
Also the snuggling is nice.
It's great to hear all your positive updates!
Liz Mom to Marielle VSD repaired 4/25/01
May 24, 2001 - larawood
For the first year anyway....we totally quarantined Ryan and had everyone wash their hands(some family members were better
than others). He hasn't been to daycare yet and we have no other kids so he spent a good bit of time germ free. This past
winter was his first time with back to back colds it seemed like but we just vaccinated him against everything and held our
breath when he got sick.He has been more healthy than I thought he would be. We do daycare this August so I am getting quite
nervous but I just hope the germ exposure won't do him too much harm. Good Luck...Lara and Ryan(19 months)HLHS,gtube
May 25, 2001 - julieinkc
Sounds great!I'm so glad things are going so well. In a way, all of Atley's equipment (NG tube, O2) kept people from touching
him. He seemed to scare them. The hardest is having another child and trying to keep your heart baby well. It will make such
a big difference in her life to have her surgery after she is a little bigger and knows how to eat, etc.
- julie
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Post: May 26, 2001 - Zero weight gain this week.
Hi Guys, we had our first visit with the pediatritian yesterday. I was very disappointed in that she weighed only 8.8 which
is is almost exactly what she weighed when we left the hospital last friday. She has been nursing so well I expected her to
have gained at least some weight. The Doc just said we would have to keep an eye on her and if she still hasn't gained when
we go back next friday we'll talk about what to do then. I have heard some of you mention supplementation before and ng tubes.
Anna had an ng tube for a few days in NICU but she had horrible fits when they would put it in and managed to pull it out
quite a few times. I really don't want to have to do this myself, what other things have you guys done to help with weight
gain? Our pediatritian doesn't have the eequipment to to check her sats so we are going to the hospital emergency room on
Monday to have that and her blood pressure checked. She is such a happy and content baby I can't believe she's not gaining
weight. Pam
Replies:
May 26, 2001 - dmm11730
PAM I AM ASSUMING THAT YOUR LITTLE GIRL IS A NEW BORN. NURSING IS GREAT BUT SOMETIMES IT IS NOT ENOUGH. 7 1/2 YEARS AGO
WHEN I HAD MY DD KATIE SHE ALSO WAS NOT GAINING THE WEIGHT THE DOCTORS WANTED. THEY HAD ME GIVE HER BREAST MILK ONE FEEDING
THEN THE NEXT WAS FORMULA.IT DID HELP A LITTLE. IT WAS A SLOW PROCESS. ALSO WATCH WHAT YOU EAT. THE HEALTHIER YOUR FOOD THE
BETTER FOR HER.GOOD LUCK.
DEBBIE MOM OF KATIE(ASD, VSD, AND MITRAL VALVE PROLAPSE)
May 26, 2001 - julieinkc
A main cause of slow/no weight gain is a cyanotic heart defect...The lack of weight gain may have nothing to do with nursing,
etc., but may be a side effect of her heart defect. As you know, Atley was born with HRHS from PA-IVS and has had a severe
struggle gaining weight. Everything I have read lists cyanotic heart defects as one of the main causes of FTT. Babies with
cyanotic heart defects burn more calories. I could never nurse Atley because of his long time on the vent, but my breast milk
had to be fortified with formula to make it 27 cal/oz to help him gain weight. He is now 13 months old and still on 27 cal/oz
formula. He needs 140 cal/kg to gain wieght, where a normal baby needs 100-120 cal/kg. The cardiologist said this is very
normal for a baby with HRHS. Atley was on the NG for 7 months, and now has a g-tube.
Secondly, maybe she just got off to a slow start. Atley's twin sister, Parker, was only 5#3 when she came home from the
hospital. The first week, she lost a few ounces. The second week, she didn't gain. We were so worried. I thought my nursing
wasn't going well. However, I took her for a before nursing/after nursing weigh in, and she was taking in plenty. By 2 months
old, she weighed almost 13 lbs!!!! She was off the charts. At a year, she was 25 lbs. She just got off to a slow start and
then ballooned.
Hang in there!!!
- julie 13 month old DD Parker and DS Atley (HRHS/PA-IVS/failed balloon valvoplasty 04-00/pulmonary valvotomy & placement
of B-T shunt 04-00/takedown of B-T shunt 05-00/unrepaired pectus excavatum/severe reflux/fundoplication 11-00/g-tube/FTT)
5 year old DD Keller
May 26, 2001 - Jellybeans25
I feel for your disappointment!Is there a Dietation, you could consult with? Even adding a bit of formula to express breast
milk, by bottle a few times through out the day, would increase the calories. If she took it through the bottle okay, it could
avoid having to do it through the ng tube. I understand you feelings of not wanting to do the ng tube, but if it ever gets
to that, I talk you through it. Christina and Cole
May 26, 2001 - drea21
You might try a supplemental nutrition system (SNS), it's ideal for nursing moms because it doesn't interfere with breastfeeding.
Basically formula or fortified breastmilk is put in a bottle or syringe, and a tiny little tube is run from the container
to your breast. As your baby nurses, the tube is slid into the corner of her mouth & as she suckles she not only gets
milk from your breast, but also milk from the tube. It makes it much easier for them to get their food, especially since they
tend to tire easily. Women also use the SNS if their milk supply isn't quite enough to meet the baby's needs-- that way it
avoids nipple confusion etc. and still gives the breast lots of stimulation.
I'm due in 4 weeks with a baby who has AVSD (AV Canal) and if he has trouble gaining weight I'm going to try the SNS. I
want to avoid bottles as much as possible. Like someone already said, it may just be a slow week & she'll catch up!
Andrea
May 26, 2001 -cvantein
Dont panic just yet.I have been told that there are two kinds of heart kids - those who have no trouble gaining weight
and those that have a lot of trouble gaining weight. The problem is that it's hard to find out which you have until after
a few weeks. Reece was born at 6lb2, discharged at 5lb10oz and then gained about 1/2 a pound per week for the first 3 months,
all on my breastmilk. Interestingly enough every time he is weighed at the hospital he weighs less than the last time I weighed
him where I regularly weigh him (baby scales at the local pharmacy). Since scales can vary by quite a lot its important that
you try to use the same set of scales to weigh newborns otherwise the weights can be significantly different. Also its fairly
common that the first couple of weeks of breastfeeding don't show large amounts of weight gain because you are only beginning
your nursing relationship and sometimes it can take a bit more work.
A few tips that helped me - heart babies are often sleepier than others of the same age, so making sure she stays awake
during feeds is more important. Some babies feed better if they are allowed to wake naturally rather than be woken for feeds
so as long as she is not going longer than 4 hours between feeds it's not always essential to wake her up. Getting enough
sleep is also a problem, if she doesn't have enough sleep between feeds she will be too tired to suck well so try to encourage
her to have a nap after each feed (this may be difficult if she is already interested in the world). And definitely contact
La Leche League to find out if they have a local leader experienced with heart kids.
Good luck and keep doing what you're doing, it sounds like everything is going pretty well!
Cheryl in Sydney
May 26, 2001 - my2winterboys
Sorry to hear about the weight gain. I know it is disappointing, but maybe next week will be better. I know that Grant
wasn't able to BF and we ended up doing high calorie formula to help w/ the weight gain. He had his ups and downs, but we
never ended up w/ an NG tube.
I will be praying that everything goes well and she starts gaining weight.
Rachel, Grant and Parker
May 27, 2001 - lissa9
Amelia did this sometimes, but our docs were happy as long as she did not lose weight. Once in the hospital when I was
nursing, I did try a supplemental feeding system. This was a tube of formula clipped to my shirt shoulder with a THIN tube
hanging down and taped on the breast. This tube went into her mouth while she nursed; so she got more food for the same work,
and the breastfeeding did not suffer. It takes a little getting used to, but that is one idea. The lactation consultant at
the hospital gave it to me and showed me how too use it.
Good luck...Melissa and Amelia (9-1-00)
May 27, 2001 - Maygirl3
Hang in there Pam....There are a lot of things this could be and a lot of different ways to fix it.
See if you hospital has a good lactation specialist that can help you.
Heart babies especially need the good things that come from breastmilk to help keep them healthy. Whatever options you
choose to approach this, always rank getting breastmilk above going to formula.
We had similar problems and I ended up pumping my breastmilk and mixing it with MCT oil to increase the calories and then
giving it in a bottle. Eventually we did go to an NG tube and it wasn't as bad or invasive as I thought it would be. I would
say you can get it in and anchored so that it doesn't come out even with little hands trying. We averaged about seven days
at a time. AFter that, I would take it out, wash him up really good and reapply the tegaderm. Tegaderm was a lifesaver as
it worked much better than tape. When my son was in the hospital for something else, I showed the nurse how I was anchoring.
Keep us posted, and just don't give up, there are lots of ways to fix this.
Tracy
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Post: June 2, 2001 - Anna gained 4 ounces this week!!
Thanks everyone for the breastfeeding and supplementation advice you gave me on the last board. We may eventually need
to add more calories to Anna's diet but for this week at least she is doing fine. Her pediatrition said 4 ounces in one week
is a bit below average but fine for her for now. I was so excited she had gained at all that I forgot to ask him any questions.
Do you guys know what is the average weight gain for a newborn? With my other kids I didn't weigh them on a regular basis
so I don't have a clue. I know my oldest weighed 15 pounds at 3 months because he had to spend his first 10 days in NICU with
problems with his lungs and he lost quite a bit of weight so that he only weighed just over 5 pounds when we brought him home.
I remember he was 15 pounds at his 3 month check up because my doctor couldn't believe he had tripled his weight in so short
a time by only breastfeeding. He ended up weighing 30 pounds at a year and being the chubbiest baby I had ever seen.He was
so fat he didn't walk until 15 months I think because he was so heavy he couldn't pick himself up. My other two were not that
heavy but it seems like they were around 12 pounds at 3 months. I assume heart babies will be smaller but what is considered
a good average weight gain for a baby with a cyanotic defect. Thanks in advance.
Pam-DS Jesse(11),DD Emily(8),DS Justin(5) DD Anna(24days)TA,HRV,VSD and weighing a whopping 8.12pounds this week
Replies:
June 2, 2001 - julieinkc
From what I found, 4oz. per week is within the norm for a b/f baby......I just looked this up:
Baby's Age Average Weight Gain (for breastfed babies):
0-4 months 4-8 ounces per week 4-6 months 3-5 ounces per week 6-12 months 1.5-3 ounces per week Reference: The Womanly
Art of Breastfeeding, Sixth Revised Edition, 1997, by La Leche League International
Baby's Age Avg. Length Increase Avg. Head Circumference Increase:
0-6 months 1 inch per month 1/2 inch per month 6-12 months 1/2 inch per month 1/4 inch per month Reference: The Womanly
Art of Breastfeeding, Sixth Revised Edition, 1997, by La Leche League International
Sounds like a great week! Just keep packing on those ounces!
- julie 13 month old DD Parker and DS Atley (HRHS/PA-IVS/failed balloon valvoplasty 04-00/pulmonary valvotomy & placement
of B-T shunt 04-00/takedown of B-T shunt 05-00/unrepaired pectus excavatum/severe reflux/fundoplication 11-00/g-tube/FTT)
5 year old DD Keller
June 3, 2001 - daschwab
Dylan was 3.8 lbs. at the time of surgery...He just made a year last week and he weights about 16.5lbs, he is a little
shrimp, but he started off very small, but heart babies will gain slower, the pc says as long as he is gaining, anything is
acceptable, he has a little chart you might could start one to its really easy just make a chart with age at the bottem and
weight going up the side and chart it with dots that way you can see by the dots going up that she is gaining with every vist,
thats just what my PC does. well good luck and I am so glad to hear she and yourself are doing so well, and I want to commend
you with how you handled your pregnancy and everything with her, I was such a emotional basketcase thinking the worst for
everything and your attitude has been so positive and just kinda take it as it comes, which I have learned to do now, but
just wanted to say what a really good job your doing, Stacey and Dylan TA.
My reply to Stacey :
I cant believe he had surgery when he was that tiny! It is great to know he is doing so well now. Thanks for the kind words.
My favorite quotation is "In this life pain is inevitable, suffering is optional". Whenever things start getting too intense
and I start feeling I have no control. I remind myself that I may have no control over the situation but I do have control
over my reaction to it(not to say I never lose it and cry my eyes out)but so far I think I've been able to deal with things
pretty well. Of course her birth I think will be nothing compared to what we will have to deal with with her surgery in a
few months. Pam
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Post: June 12, 2001 - Anna is getting bigger
Hi everyone, Anna had her check up yesterday and she gained another 6 oz. (in ten days) Her Doctor says that is on the
low end of the scale but it's acceptable for now. She was extremely fussy on the weekend, I think it was just gas as she seems
over it now but I was wondering what do you guys do for your babies when they are gasy. I use to give my other kids "Gripe
water" which worked really well but I didn't know if I should give it to her or not. I moved my computer a couple of months
ago and haven't been able to get my scanner to work since. I am hopeing to get it all straightend out next week when we move
so you guys can see what she looks like. I love going to your sites and being able to put faces to your names. Pam
Replies:
June 14, 2001 - Jellybeans25
So good to hear that she is gaining weight. I don't think gripe water would hurt her. I've never used it, so I'm not one
with any good advice. It know it's something that is not common in the US, so it will be interesting to see what type of feedback
you may get. Interesting website, with great pictures! Looking forward to seeing her, and hope all goes well with your move!
Christina and Cole (who getting a bit of a temper in the evenings!)
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Post: June 22, 2001 - Cath Questions?
HI Guys, Anna had her first cardiologist visit today. Her ekg and echo all looked great (relatively speaking) and I was
told she shows no signs of CHF. Our PC is 62 years old but looks to me to be as old as Moses. He has a great reputation and
is extremely well respected in the medical community. I have met two women both of whom have children in their 20's that he
has treated since birth and both absolutely adore him. This is the third time I have seen him as I saw him twice when I was
pregnant and I really like him though he did seem to have a hard time reading the ultrasound while I was pregnant (he didn't
have any trouble reading the echo today). My concern is that he said he would like to do a heart cath sometime in the next
4 to 8 weeks "depending on scheduling". The plan is for Anna to have the Glenn when she is about 4 months (right now she is
6 weeks). I had always assumed the cath would be done just before surgery when we were in Edmonton but he wants to do it himself
here.He says so she will have time to recover before surgery. He said he would not put her down with general anethetic but
would just give her something to make her sleepy and then a local anesthtic in her leg. The plan would be to have the cath
at around 7:00 am and she would be discharged the same day. As I have mentioned before there are no surgeons here the closest
is in Edmonton (9 hours away). HE said the "concerns" with this procedure are stroke, damage to the vessels in the legs and
possible death but he has been doing this for 30 years and has never lost a baby. I guess my question is how many of you have
had complications with cath's and what were they? HOw often is a surgeon needed? I believe I remember someone(Julie and Atley
maybe) telling me before that if a surgeon hadn't been there when they ran into trouble with a cath that they wouldn't have
made it( I am hopeing I am remembering this wrong and it was procedure other than a cath). I am just trying to get as much
information as I can before I decide whether or not I want to have it done here or in Edmonton. Anna looks so perfectly normal
I can't believe we have to do this. Thanks for the help. And thanks again for all the info you have given me over the last
few months the PC actually asked me today if I had a medical background or was somehow involved in the medical field. Pam
Replies:
June 22, 2001 - julieinkc
Hate to tell you that it was a horrible cath mishap with Atley that I told you about....
It was me that told you the story of Atley's horrible cath mishap. Now, his cath included an attempt at balloon valvoplasty,
so I assume that they use a little bit different equipment and it is more dangerous. I would just be scared to have a cath
done without a surgeon right there.
The day after Atley was born, he had a cath to try to open his pulmonary valve, but the needle going into the valve poked
2 holes in the front of his heart, causing bleeding, which then caused his blood pressure to crash. He was rushed to open-heart
surgery to repair the damage from the cath. While the surgeon was there, he cut open his pulmonary valve and placed a B-T
shunt to allow blood to get to his lungs. The cath did more damage to him than anything. I think that's why he had such a
horrible recovery because he went into surgery barely hanging by a thread.
I'm sure Atley's story is very rare, but it is a real possiblity. He wouldn't have lived if the surgeon wouldn't have been
at the hospital to cut him open immediately.
- julie
14 month old DD Parker and DS Atley (HRHS/PA-IVS/failed balloon valvoplasty 04-00/pulmonary valvotomy and B-T shunt 04-00/takedown
of B-T shunt 05-00/unrepaired congenital pectus excavatum/severe reflux/severe milk proten allergy/fundoplication 11-00/g-tube/FTT)
5 year old DD Keller
June 22, 2001 - daschwab
Pam another horrible cath story but again rare....Dylan to had a horrible cath, or as I refer to it as the cath from Hell.
We did not know it but he had a kink or blockage of some sort in his left PA, they injected the dye into his heart and everything
was fine but when they went to inject into the lungs he crashed, his lung collapsed, his sats dropped into the 50's for a
while he was quite unstable, he had to be rushed to New Orleans, where he has sugery, it took two days to get him stable,
they do not really know what happened, maybe a allergic reaction, but the dye was already in so I doubt that, I think it had
something to do with the fact that he only had one lung at the time. I dont know, I think this is pretty rare, there are many
on this board that have had sucessfull caths. Dylan is having another cath on July 6th and surgery on July 9th, The glenn,
and they will BOTH be done in New Orleans. Just to be safe. Stacey and Dylan
June 22, 2001 - larawood
We have done caths 2 ways....Our original hospital believed in doing the cath a few weeks before surgery and our other
hospital believed in doing them the day before surgery. Didn't really matter to me, honestly, Ryan seemed to recover just
as quick each way. We also had our Glenn at 4 months and a cath 2 weeks before. Neither of our caths were done under general
anesthesia,just alot of some med(I think Morphine?) that helps with pain and keeps the babies sedated. Ryan also got local
anesthetic in his cath leg too. One hospital intubated for caths and the other didn't. We have been through it all and it
never was horrible or anything. Much easier when they are babies too, as they get older, they want to move around and sometimes
the docs just want them to keep still--especially their leg--after a cath. Caths can give alot of information without being
too invasive so they can be very helpful. Good Luck,keep us updated!Lara and Ryan(20 months)HLHS,gtube,done with all surgeries
June 22, 2001 - Jayell
We have had 5 caths, 2 different hospitals, all intubations under general aneth. No one has ever mentioned to us doing
a cath with only sedatives and a local. James had caths at 2 weeks, 10 months, 22 months, 3 years, and 4 years of age. Fortunately,
all of them were uneventful. He was given a sedative to calm him and then gas to put him out, and then was intubated during
the procedure as a precaution. He may have been getting further anethsesia intravenously but I don't know about that. The
only medical mishap during any was during the 3rd one, the cardiologist stuck himself deep in his hand with a scalpel when
he was trying to put it back in it's case.
We lived in Florida until last year, and he had 2 caths in Tampa and 3 in Orlando with a total of 3 different cardiologists.
However they were all done in very well established pediatric cardiac facilities within a hospital that could have provided
surgical backup as well by a trained pedatric cardiac surgeon if needed.
As far as the timing. We have had 3 caths done well before surgery, and one done the day before (and one was done right
after a surgery as he was having problems they needed to get a closer look at). I have to say in all honesty, the one we did
right before the surgery was brutal. No sooner had James had the heart cath and was up all night miserable recovering, he
went into surgery the next day. We were all so exhausted and tired out from the prior 2 days of getting ready and going through
the cath, the surgery was alot on top of that. The one he had at 10 months of age was done a month prior to surgery, and it
was much easier doing it that way.
***BUT***** Because we had that heart cath done the day before James' surgery last year, it allowed the surgeon doing the
surgery a chance to see it while he was planning James' surgery the following morning. He saw something on the cath that prompted
him to explore an entirely different surgery for James the next day, one that was an improvement over the surgery we had planned
and which no one had considered, including this surgeon, after seeing his previous 4 cath tapes. We were all thrilled with
the change in plans and that James did well with the new treatment. So for that reason, I am glad we did the cath when we
did.
It depends on how stable you daughters defect is...if there is room for it to change alot in a short period of time for
better or worse. Only the cardiologist can tell you that.
Now this is *JUST* a guess and I only thought of it as I sit here typing. But is it possible that with cyanotic children
they are more likely to use a general and intubation? Maybe James' cyanosis is the reason he was always put totally under
and intubated. I have no idea, the thought just struck me.
Anyway, if you have any hesiations about this man, his age or his previous difficulty reading your echo or something like
that, you should listen to it. I really believe in parental intuition. Since your daughter is doing so well, you have the
opportunity to investigate other facilities and see if you find one that provides services that reassure you your daughter
will get the best possible care. Remember, you have no obligation to a particular doctor out of sentiment. Go to the one who
is best qualified to care for your baby, and who you feel good about.
*Hugs*
Jayell (James 5, HRHS, pulmonary atresia, ebsteins anomaly)
June 26, 2001 - Jellybeans25
I think I would let your Dr do it, as he is experienced. You may feel you want to go to Edmonton, so if anything went wrong
that they be more equipped. Although, I think you may have an increase chance of having a resident do it, who is just learning.
It was the resident that screwed up, in the sense that he had Cole prep for the wrong day! As I was sure it was schedule the
next week, see mom knows best! You will hear of good and bad stories as each of us are unqiue. Go with your gut, Christina
and Cole
June 23, 2001 - cl-grantsmom
2 caths..no problems either time!! Home the same day with no complications.
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Post : July 16, 2001 - Reply to Jellybeans25 asking how I was doing.
Sorry I havent been posting. With moving and trying to get everything organized I've been lurking more than posting. I
am not sure about her weight. I have my first appointment with the pediatrition in almost a month this afternoon.When we saw
the PC he weighed her but it was a different scale so I didn't really pay attention. Today will be the real test. She seems
fatter to me and she has outgrown a few things (though she is still mostly wearing size 0-3months) I'll try to post tonight
and let you know how it goes. Thanks for checking up on me. PAm
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Post: July 17, 2001 - Good and bad news about Anna
We went to see the pediatirition today (our last visit was five weeks ago) The good news is that at just over two months
old Anna weighs ten and a half pounds. This puts her near the middle of the growth chart curve(I can't remember how long she
is but she was at the high end of the chart for length). The bad news is her heart rate was 170 and her sats have dropped
from the mid 80's to the high 70's. She is the happiest baby in the world but I have noticed her feet and hands have been
looking bluer lately and she goes quite blue when I put her in her swing ( has anyone else ever had that happen?). We saw
the PC four weeks ago and he said he still wanted her to have her surgery (Glenn)at four months of age (September) and that
he would like to do a cath sometime in the next four to eight weeks. It's been four weeks and I still haven't heard anything.
He said they would send me a letter, I tried to call last week but the answering machine had a message saying they were on
holidays (There was a number to call for emergenices but I didn't call it). I am going to try them again tomorrow. Our pediatrition
said he would contact them and let them know she did not look as good to him this time as in previous visits. He said not
to book an appointment with him until after he talked with them as he felt I would probably be seeing the PC fairly soon.
Pam - Anna (2 months) TA,HRV,VSD
Replies:
July 17, 2001 - ebhamom
Glad to hear Anna is growing, sorry to hear about the problems. Don't you just love when they say we'll call you in a few
weeks and they never do!!!! That makes me so mad. Sounds like your dr is concerned and is gonna help ya out, that sure makes
a difference.
Keep us informed and hug little Anna for me.
Tina mom to Adam, coarctations of the aorta
July 17, 2001 - daschwab
Pam, sounds like overall Anna is doing well, you knew the day would come when her body would tell you it is time for surgery.
Just watch her and he change in habits be it eating sleeping or anything and notify the doc. GOod luck to you and Anna, Stacey
July 17, 2001 - andshamom
Im sorry Pam. It is so hard to realize that your child may need surgery sooner than later. I hope your doctors listen to
Anna's body and don't stick to a rigid timetable -- I know most Glenns are done between 4 and 9 months, but Shawn had his
at 9 weeks and did great (and Stacey's Dylan won't have his until he's about 14 months - right Stacey?). Hang in there and
let us know when you get more info.
Hugs,
Susan and Shawn
July 17, 2001 - hokie1999
Blue Feet and swings......I have noticed that Gabe's feet also get blue when he is in the swing, expecially for a long
time. he is at a daycare center that puts him in the swing a lot (I am looking to keep him home with me...soon!). Last Tuesday
we went to the PC because his feet were blue. Sats were fine, and I someone suggested that the time in the swing might be
why. Becca and Gabe
July 19, 2001 - cl-grantsmom
Glad to hear she is growing so well. I know how hard it is to see the SATs dropping, but it sounds like she is really growing
well, which is a great sign. I know that the Glenn is inevitable, but the more she is growing now the better off she it.
Good luck, I hope you can get ahold of the PC this week. Sounds like you have a great ped who really cares for Anna.
Rachel, mom to Grant 3.5yrs....10mo post fontan (dextro, DILV, sub-AS and hypoplastic aortic arch) and Parker 6mo (HH)
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Post: July 18, 2001 - Heart Cath next Friday
The PC's office called today and said they would like to admit us next Thursday before 3:00pm and do the Cath on Friday,
releasing us sometime Friday night. When I spoke with the PC a few weeks ago he said we would not have to stay overnight in
the hospital if we didn't want to (my mother-in-law lives near the hospital and I would much rather (try to) sleep at her
place than at the hospital. The secretary I spoke with today says she doesn't know why he wants us actually admitted on the
Thursday but she will look into and let me know. I can't belive this is all happening so quickly. Anna is so wonderfully happy
it's been easy to push all thoughts of surgery and possible risks and side effects to the back of my mind and just enjoy her
and not really think about the scarey stuff at all . That really changed on Monday when we saw the pediatrition. I've been
doing quite well until a little while ago when I read all your responses to my last post. Just knowing you guys are around
and that you understand what I'm going through makes such a difference in how I feel about everything. After reading your
posts I had a good cry, thought you guys have been through a lot worse and still have your babies and chances are we'll get
to keep Anna too. I feel a lot better now. I realize a cath is one of the least of the things we are facing but knowing there
is worse to come doesn't really make this any easier. Thanks again for taking the time to respond to my ramblings, no matter
what you say it makes me feel better just knowing you're all out there. Pam Jesse (12), Emily (8), Justin (5), Anna (2 months)
TA,VSD,HRV -Cath scheduled for Friday July 27th
Replies:
July 18, 2001 - julieinkc
Please! A cath *is* a scary thing; dont deny your feelings.....
I think most of us have started this long journey with that first cath. It is scary, but most likely will go just fine.
and the doctors will know so much more about her heart.
I guess when I was going through all of this, it just "happened". I didn't have time to prepare for it, or time to bond
with Atley. I never even held him until he was 7 weeks old. So, in a way, I didn't have time to think about it or be scared
or worried. I know it's hard to think of now, but soon all of this will be behind you and she will be doing just great.
Sending lots of thoughts and prayers your way!
- julie
15 month old DD Parker and DS Atley (HRHS/PA-IVS/failed balloon valvoplasty 04-00/pulmonary valvotomy and B-T shunt 04-00/takedown
of B-T shunt 05-00/unrepaired congenital pectus excavatum/severe reflux/severe milk protein allergy/fundoplication 11-00/g-tube/FTT)
5 year old DD Keller
July 18, 2001 - ebhamom
I hate caths, they are scary!!.....
Big hugs to you an Anna. We all panic at times, at least I know I do, But somehow, when things actually start happening,
I'm pretty calm, it's before and after that tears me up.
Keep us informed and give litte Anna a kiss for me.
Hugs
Tina mom to Erin 13, Becca 11, Hondo 9 and Adam with coarctations of the aorts, 2
July 20, 2001 - Jellybeans25
Perhaps, Anna will be the first one in the morning, and they need to prep her by having her on clear liquids hours before
the surgery. I have confidence in your PC in how he has said how confident he has been in doing cath's in the past. I'm sure
all will go well. They sure are helpful in understanding the anatomy before surgery. I know they sometimes even do them on
newborns, and she'll be so much better off since she is bigger! Even once you approach OH she'll won't be there long and on
her way to healing, as she'll be one of Dr. Rebeyak's patients! On the other side of things, how did the move go? Are you
over that stress? Christina and Cole (10 months)
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Post: July 27, 2001 - Cath went great!
Hi Guys,
Anna did great in the cath, no complications except she had it at 8 this morning it's now about 6:00pm and she still is
not really awake. The cath showed she actually has 2 vsd's to go with her asd. The vsd's are closing which is why her sats
are dropping. My Pc is going to make a personal call to Edmonton on Monday as he would like to see her have the surgery possibly
within the next two weeks (YIKES). He doesnt think she is in immediate danger but he also doesn't see any point in waiting
as she is in excellent health and it at a good weight right now. Her lung pressure was 11 which he said was excellent. I am
at my sister-in-laws house right now so I have to go but I'll write more when we get home tomorrow. Thanks for all your thoughts
and prayers. Pam
Replies:
July 27, 2001 - ebhamom
Glad to hear Anna is doing so well. It will be good to get the surgery behind you, but it sure must be hard to take a little
one in seemingly healthy for surgery. We just have to belive we are doing the best we can for our little ones.
Tina, mom to Adam coarcations of the aorta,
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Post: July 29, 2001 - How old was your baby when it had the Glenn?
After Anna's cath the PC informed us she has a quite a large ASD and two rather than one VSD's. The VSD's are right beside
each other so they didn't see the second one before. The VSD's also are closing and her 02 levels are dropping (78 pre cath,
71 post) which is why he wants her to have surgery asap. He said the pressure in her lungs is excellent at 11. I have read
that pressure needs to be low for the Fontan to be effective but I have never heard numbers used, from your expereinces is
11 really good? I was also wondering about her age. It seems to me that babies are ususally much older before they have the
Glenn. SHould she not have a BT shunt to help improve her 02 sat levels and wait to have the Glenn when she is older? I know
these are all things I will discuss with the surgeon when we get to Edmonton but I was just curious about all of you guys'
experiences. Pam
Replies:
July 29, 2001 - andshamom
The doctors in Boston had never done the Glenn on a child that young, but he really needed it. He wasn't diagnosed until
6 weeks old and went 7 weeks before they did a much needed pulmonary artery banding. Then the surgeon did a combined Glenn
and Stansel shunt two weeks later. (I'm not sure if the Stansel shunt is the same as a BT shunt???) Shawn did really well,
especially given how sick he was and he ended up being a "perfect candidate" for the Fontan.
Our PC told us that most kids have the shunt early on, the Glenn at 4-9 months old, and the Fontan at 3-4 years. But, he
also said that following the conventional timetable for these surgeries is not always right for every child. It was somewhat
of a risk to do Shawn's Glenn/Stansel when they did (instead of the "usual" 3-5% risk of complications, he had a 20% chance
of stroke or death because of not having a PA band or shunt done in the first week or two of his life). But, they weren't
sure he would make it until 4-9 mths old.
Even heart surgeons/PCs can fall into the "conventional thinking" trap. Just because they've always done a certain surgery
on kids at a certain age doesn't necessarily mean it is the "best" practice. In the past few years, some doctors have begun
doing Fontans on much younger kids (based on the theory that it's better to operate before the child's single ventricle starts
to get overworked).
I hope this helps -- Anna's already older than Shawn was for his Glenn and probably bigger too!
Susan and Shawn (4/98, DILV, TGA, ASD, PA Banding 5/98 and 6/98, Glenn/Stansel 6/98, Fenestrated Fontan 10/99, fenestration
closed 6/01, bradycardia -- needs a pacemaker, but doing GREAT and starting preschool on Sept. 4th!!!)
July 29, 2001 - cl-grantsmom
Grant had his Glenn at 6mo old. I don't know what his lung pressures were, I never thought to ask and I don't think they
ever really made a big deal about it.
I know they like to wait sometimes, but it isn't always the best thing to do. If her SATs are dropping that is probably
why they want to do it now. I know it is always hard thinking about an upcoming surgery, we are always here for you.
Post any time.
RAchel, Grant and Parker
July 30, 2001 - daschwab
Dylan will be almost 15 months old when he has his Glenn. The time frame given above is the norm but like she said every
child does not fall into the norm. We had to have a second shunt placed at 7 months old because he had NO blood flow to his
left PA and lung. therefore we have needed to wait months to let that grow, which it did. We are scheduled for the glenn on
8-15-01. YIKES!! As far as the pressures are concerned no one has ever mentioned numbers, at his cath a month ago they just
said his pressures were great, the only numbers I have been given regarding tests is on the lung perfusion test, they said
Dylans was 49-51 which is pretty much what ours is. Good Luck Stacey and DYlan TA
July 30, 2001 - Wynnellye
Christopner was 12 months old when he had his Glenn.He was 7 weeks old when he had his Central Shunt (he also has TA).
We are waiting to see when they decide to do the Fontan and will place pacemaker leads then too.
From what we were told, they don't normally want to do the Glenn too soon because babies tend to have high pulmonary pressures
early on, so they place shunts (BT, Central, whatever is needed). And, then they follow that up with the Glenn at a later
date. It's interesting to see how each surgeon approaches these things, but each child is different. Sounds like he feels
your daughter's pulmonary pressures are great! Hope this helps. Hugs, Shellye & Christopher (TA - 33 months) & Evan
(13 months
August 7, 2001 - love bugsmom
Hi Pam, Jacob was 7 1/2 months when he had the Glenn.
I have a very good friend whose daughter was born with a tumor in her right ventricle, and they did the Glenn on her at
7 or 8 weeks old. I haven't heard anything negative about having the Glenn done at what seems to be a very early age - usually
when they do it so young, it's for a reason, and the child seems to do very well with it!
Also, about the pressures in the lungs for the Fontan...at last check, Jacob's pressures were at 11 as well, and this is
a very good thing! The pressures need to be under 15 in order to do the Fontan, otherwise, when they do it, the pressure will
be too high, with all the additional blood flow, and the child's body would not be able to handle it. (This is my explanation
in laywoman's terms, so please feel free to have a professional explain it properly, but as far as I know, this is the basics
of it!)
Hope this has helped!
Trish
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Post: August 13, 2001 - Anna 55.5 hours post Glenn
Hi everyone, I am posting from the nurses station so I have to keep this quick. Anna had surgery on Saturday morning, she
was in PICU at just before noon, she was extubated at 9:00pm that night. Her chest tube was removed Sunday (yesterday) at
noon, all lines except for her iv were removed at 2:00pm and we were sent to the floor. She was still receiving a very small
amount of morphine through the iv but that was stopped and the iv removed at just before lunch today. She is taking Tylenol
for pain and Lasix twice a day but they expect to stop that tomorrow.The only thing she still has is her pacer wires which
will be removed in the morning. She is doing so incredibly wonderful. She has been nursing, pooping and peeing just fine.
She even started smiling again a couple of hours ago. Her sats are in the high 70's to mid 80's on room air and are expedted
to possibly go even a little higher over the next couple of months. She is the talk of the hospital as I guess she is the
youngest Glenn they have every done here as well as she had the shortest PICU stay of any Glenn ever done here. I am feeling
incredibly blessed and thankful and just wanted to let everyone know. Thanks for all your support and prayers. I'll write
more when we are home. Pam.T and Anna the miracle baby.
Replies:
Once again I recieved many posts of congratulations but for the sake of time and space I will not post them . Pam
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Post: August 17, 2001 - Were home too!!!(sorry kinda long)
Anna has everyone at the hospital talking. She was moved from PICU to the floor just over 24 hours post-op which is the
shortest PICU stay they have ever had for a Glenn. We were then released on Tuesday which is the shortest hospital stay they
have ever had for a Glenn. We stuck around in Edmonton until Thursday more for me than for her. We saw the PC Thursday morning
and then made the 9 hour drive home. Her sats fluctuate between the high 70's and low 80's but sometimes were as high as the
mid 90's. She still looks a bit blue when she is upset but nothing like before. We had quite the scare before surgery. Over
the long weekend I felt like she just wasn't right but of course everyone was away and she was still happy for the most part
so I waited until Tuesday morning and called my pediatrition, he couldn't see her until Wednesday but he called the hospital
so I could take her and have her sat's checked. She was hitting in the low 70's when she had her cath a little less than two
weeks before but when the ER nurse checked her the highest read we got was 45. I took her straight to the pediatrition, he
checked her and said she seemed to be doing quite alright but he would call Edmonton and see what they said. He couldn't reach
anyone so he just left a message. I had spoken with our Nurse Specialist (Lois) the friday before and she assured me that
Anna was on the list to be discussed at there next meeting which was that Tuesday and she would call me to let me know when
they thought surgery would be. By the time I had gone to the ER and then seen the Ped it was 2:00 in the afternoon and I still
hadn't heard from them. The Ped said if they didn't call me by noon Wednesday to give him a call and he would see what he
could do. I left his office and went straight to my husbands office(a few blocks away) and called Edmonton myself. When I
told Lois she was only in the 40's she told me to stay where I was, she would talk to the PC and call me right back. She called
to say I should come asap and they were arranging for oxygen for the trip. We drove out first thing Wednsday and arrived in
the early evening. We were admitted Thrusday morning, her sats were up in the 60's, sometimes the 70's with her on oxygen
but she would have short desat periods where she dropped into the 40's but these were ususally less than a minute or two.
The surgical team was swamped and PICU was full so they told me it would probably be Monday before she actually had surgery.
However the surgeon came by on Friday afternoon to tell me that the way things were looking a bed in PICU would probably be
free and she might be having surgery Saturday afternoon so they wanted to start getting her ready by giving her a Steribath.
She didn't like the bath and got quite upset, she also started pooping before the bath was done which made her even more upset.
By the time I got her cleaned up her sats had dropped to the teens, they tell me that once it goes lower than 40 it's not
really accurate (that didn't make me feel any better). Normally when she would desat she would come back right away but this
time she wasn't coming back. After a few minutes in the teens she moved up to the 20's, another few minutes and she was in
the high 30's but she wasn't coming back very fast. Her eyes were rolled back and I really thought she might be leaving me
for good. Finally after about a half hour she was back in the high 40's. The surgeon came back by and said they were flying
another child to a PICU in Calgary to make room for her and that surgery would be at 8:00am the next morning unless she de-sated
like that again in which case they would do the surgery immediately. She did fine through the night, I was told not to feed
her after 4:00. I thought she would be starving by 8:00 but she was actually asleep when I handed her over though I could
hear her screaming by the time I walked out of the operaing room area. The anesthitist came by after she was in PICU to tell
me she was really blue by the time they had her ready for surgery and it was good that they hadn't waited until MOnday. Our
surgeon's name was Dr. Ross not Dr. Rebecka as we had planned as he was on holidays and didn't come back until MOnday. I hadn't
heard as much about Dr. Ross as Dr. Rececka but obviously he knew what he was doing as Anna is doing so amazingly well. We
were told to expect her to be quite swollen until her body became use to the new circulation but though she was a bit puffy
immediately after surgery she was fine by Sunday and hasn''t had any swelling since. I am still giving her Tylenol about every
4 hours and she has to take Aldactazide every 12 hours and half a baby aspirin once a day but they said this would probably
only be temporary. I am just so very thankful to have her back home with us, looking pink and smiling at everything again.
Thanks again to all of you for you prayers and support. Pam.T and Anna 5 days post Glenn
Replies:
August 17, 2001 - Jellybeans25
Pam and Anna,
Welcome home! Glad to hear that you were able to get to Edmonton, on your mother's instinct, and that once there, they
were able to be quite accomodating. Scary times with the Sats! Is she on Oxygen now? Did you get an ambulance/plane ride home?
I haven't heard of Dr. Ross, but obviously he has a good touch! You must be so pleased to have her get through the Glenn,
so well! Hoping that she will continue to improve!
Christina and Cole (11 months)
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Post: October 12, 2001 - Anna update: I'm finally back on line.
My computer has been down for almost a month but I finally have everything working again and I even have high speed now
which is amazing. Anyway, At Anna's one month post surgery check up with the PC he said she looks so good he doesn't want
to see her again until the spring. Her echo showed that everything was healing perfectly, her weight was up and her o2 sat
was 80. He took her off the Aldactazide but said I should continue with half a baby aspirin for a few more months. I took
her to my pediatrition last week and she weighed 15 pounds, is 29 inches long and is doing absolutely everything she should
be doing at this age. She has gotten so active lately that she has rubbed most of the hair off the sides of her head but she
still has quite a bit on top which usually stands straight up. I have started a website for her, yesterday I spent two hours
typing out her heart story but I got interupted and when I went back to finish it it was all gone. Oh well, such is life.I
don't know when I'll get to it again but for now at least there are a few pictures so my family in Alabama get to see what
she looks like. (I think most of you guys already saw the pictures of Anna after surgery but I have added a new page with
a few pictures of us with our Emmy - I still can't believe we won)Thanks again to everyone for all their encouragement, I
can't believe it's been almost a year since we found out we were having a heart baby. Pam - Anna 5 months TA,HRV,ASD,VSD 2
months post Glenn and getting very chubby.
Replies:
October 13, 2001 - cl-grantsmom
Anna is adorable!!!! Thanks for sharing the pics with us...I just love seeing everyone kids. Sounds like Anna is doing
remarkably well and recovering from her Glenn very well. She is getting huge too!!!! Parker is 9mo and I think he probably
only weighs 17lbs and he is heart healthy!!!
Please keep us updated on Anna. She is doing so well...what a wonderful PC appt!!!! Sounds like she will be med free in
a couple months!!!
Rachel, Grant and Parker
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February 10, 2001 - What does it mean to be a parent of a child with a Heart Defect?
It means going into your baby's room a dozen times a night just to check and see if he is breathing. It means standing
over the crib and watching for the chest to rise and fall and when you don't see it move you begin to panic and put your head
down close to the baby's face to try to hear him breathe. It means that when you don't see the chest move and you don't hear
the breathing (because your own heart's beating is drowning out any other sound in the room) you put your finger under the
baby's nose to feel the warm air on your finger until you wake the baby and he stirs and you're thankful, so thankful that
he's still with you. What does it mean to be a parent of a child with a CHD? It means waking up with a start every morning,
jumping out of bed and running to your baby's room wondering why he isn't crying yet. It means feeling a huge sense of relief
when he hears you and opens his eyes and smiles. It means saying a prayer of thanks for another day. It means measuring out
his medications and panicking if he spits some out. How much did he spit out anyway? 2 cc? 3? And wondering if you should
guesstimate how much more he should have and worrying about overmedicating. What does it mean to be a parent of a child with
a CHD? It means checking his nailbeds against your own to determine how blue he is today. It means asking your husband, mother,
sister "Do his lips look blue to you?" It means snuggling him in an extra blanket for fear he won't be warm enough. It means
worrying that even a sniffle could cause an infection that would harm his heart. It means taking your baby to the doctor and
worrying if he might get something worse by being there. What does it mean to be a parent of a child with a CHD? It means
knowing that everyday is a blessing and a gift. It means knowing that you are the luckiest person in the world just to be
a parent. It means cherishing every moment, every breath with such intensity that you feel yourself come to tears for no apparent
reason. It means praying for a miracle to save your baby's life. It means praying that your marriage is strong enought to
edure the hospitalizations, the seperations, the grief. It means praying for the will to live even if your baby doesn't. It
means your own heart knows a pain no parent should know. It means feeling weak and helpless and angry and depressed because
you know your child's fate is out of your hands. It means feeling strong and determined and brave because you know you have
to be. What does it mean to be a paren of a child with a CHD? It means your love knows new unlimited boundaries. It means
your pride in your child's accomplishments is unparalleled. It means your pain has taught you a deeper sense of compassion
and understanding than you ever imagined. So, what does all of this mean to us? It means we are all united by the same feelings.
It means that we all know the mixed up emotions of living with death - but more importantly of living with life. It means
that even though we are strangers we are more to each other than friends could ever be.
1996 by Anna Marie Jaworski
