The "heart" thread (CHD) - Page 5 - Mothering Forums

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Old 01-23-2010, 09:44 PM
 
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lillismom, that must have been horrible! I know that the bypass was one of the hardest things for me too. I think a few of us have surgeries coming up the teens too.

Im SO glad your ds came out of it ok and even though we didnt stay in a RM house, i applaud them for all the good that Ive seen them do!

Hummingmom, I dont worry about my older dd but I wonder about any subsequent little ones Ill have!

Sophia is 2 months post-op and doing AMAZING. She isnt on any diuretics anymore and her blood pressure is sloooowly dropping back to normal. She has an INSANE amount of energy and is THIS close to crawling! (shes 8.5 months)

Heres a few pics of her, can you guys see them? Shes happy ALL the time and just a real joy to parent!

Hope everyone is doing well!


ETA: I think you need a facebook to see them.

wife. dd1 : dd2
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Old 01-23-2010, 10:08 PM - Thread Starter
 
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AWESOME!

I also didn't take anything during DS2's pregnancy. I was on depo provera a year before conceiving him and it screwed my body up pretty bad so I've always wondered if that could have caused it. I also miscarried the cycle before getting pregnant with him.
me too....

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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Old 01-24-2010, 01:48 AM
 
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I miscarried 2 cycles before her. WTH?!

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Old 01-24-2010, 02:49 AM - Thread Starter
 
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I miscarried 2 cycles before her. WTH?!
Wow!I wonder if it has been studied (the prevalence of m/c happening right prior to conceiving a "heart" baby)...

I know the thought had crossed my mind before but then I also just wonder if like my first pregnancy (had we made it all the way through), if the baby would have also had a CHD ...maybe even more severe...

So it's kind of a chicken and egg question...but an interesting one to ponder.

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Old 01-24-2010, 05:56 PM
 
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My first 2 dc have left heart defects. I had a miscarriage and then my 3rd dc who has no cardiac issues. I often wonder if the baby I lost had some sort of heart issue.


My father was heavily exsposed to Agent Orange in Vietnam a few years before I was born. There has been some research suggesting that grandchildren of those men exsposed have higher occurances of heart and kidney defects.

I have pretty much stopped wondering/worrying about what may have caused the defects. I know I did nothing to cause them (drug/alcohol/lifestyle) and I have heard of many women who do things that "should" cause issues and have healthy babies. It can get to be a toxic thing to dwell on in my experience.
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Old 01-25-2010, 03:20 PM
 
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It can get to be a toxic thing to dwell on in my experience.
Yup! Its taken me so long to realize that I cant progress or help Sophia progress if Im holding onto that guilt!

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Old 01-26-2010, 12:47 AM
 
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Interesting about the miscarriages, I've often wondered if the baby I lost had serious heart issues too. I miscarried around 5/6 weeks and I know the heart is fully formed by 5 weeks so I wonder if it didn't form correctly? DH's dad was also in vietnam and exposed to agent orange. Interesting. His brother also had a baby with downs syndrome.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 01-26-2010, 12:48 AM
 
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Sophia is adorable! I'm glad she's doing so well.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 02-09-2010, 11:02 PM
 
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Hope everyones doing well!

Sophia had a cardiac appt last week and we dont have another appt for 6 MONTHS! YESSS!!!!!!

I was curious though....Were planning a vacation and it WAS going to be in British Columbia at some secluded hot springs in June. (Im in California) but last night I FREAKED out thinking about something happening there and us not being by a hospital. The nearest hospital is 20 min away. There IS a small airport about 3 miles away. I was ok with it (weve been planning for a month) but now I cant do it.
Can you guys give me your advise/experiences with the first trip post-op? Are we EVER going to get a vacation? (one thats not near a Ped hospital with a heart team! lol)

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Old 02-09-2010, 11:36 PM
 
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I was nervous going anywhere too. It passes with time. I brought my stethoscope and blood pressure cuff on our first trip away from home : We're normally 90 mins away from the children's hospital anyway so going away actuallymade us closer to a kids hospital. The fact that they've moved her to 6 month appointments is such a good sign, it must mean that her heart is looking good. I wouldn't worry about going away too much. If it makes you feel better research and get the names of the nearest childrens hospital and ped cardiologist just in case.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 02-10-2010, 11:55 PM
 
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Hi everyone!I'm so happy to hear everyone's heart babies are doing so well!

Ds has TOF.He had his surgery over 8 years ago,October 5th,2001,at Children's in Boston.It was a full repair,but he is missing his pulmonary valve,so that might have to be replaced at some point in the future,we were given a time line of 20-50 years,which is amazing.He also has a microdeletion on his 2nd chromosome.We're not sure what that means at this time.He's also on the autism spectrum(Asperger's or high functioning autism,depending on which drs we're talking to).He also has some problems with his legs(they said his CPK levels were very elevated,I'm not sure what it means).He's afraid to exercise because it hurts,but we're working on it.He's a chubby,healthy little boy.He sees his cardiologist every 6 months or so,his geneticist and ped once a year.He's been to neurologist a couple of times for his legs,but they said there is not much they can do,except a leg biopsy which he didn't recommend at this time,since the pain isn't all the time.

He has some learning issues as well,he reads well but doesn't comprehend what he read.He can't write too well,and screams and fights when he's asked to.He's great at science and math though,his favorite things.He's in 3rd grade,in a self contained classroom.He gets frustrated easily,and will kick,throw,hit and scream.I had to fight for his IEP.They didn't want to start having him go to a regular classroom,and I did.Now he goes to 2 3rd grade rooms,besides his own class!He goes for technology and math,since he loves both he behaves well.He does have someone with him,either the social worker,his speech therapist,or his occupational therapist.I'm hoping to get him an aide and get him into a regular classroom full time,but the school is saying no way.Just another fight I have to win.

He had a Make a Wish trip to Florida whe he was 4.It was amazing.I highly recommend MAW.They sent us to Give Kids the World,which is a vacation in itself.They gave us spending money,and we also were given tickets to Sea World,Disney and Universal and a nice little farm called Green Meadows.They were very accomadating.We never had to wait in a line,we got to meet all the characters,it was just so much fun.Ds remembers everything.Give Kids the World let us borrow a video camera so we have most of it on dvd.They also treated dd just like ds.When they came out to meet us they brought her gifts as well as ds.They even let my parents stay at GKTW for free,they just had to buy their own plane tickets and park tickets.They could eat with us and do everything we did at GKTW for free.

He's just an amazing kid.I can't believe he'll be 9 in July.It went by so fast!

Student mama to one awesome,talented and unique dd,15 and one amazing, sweet and strong ds,12(born with heart defect Tetralogy of Fallot,also on the autism spectrum),9 cats,and 2 gerbils.
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Old 02-11-2010, 12:55 AM
 
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Welcome Muldey! What an amazing story. It sounds like you have a great little guy there!

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 02-19-2010, 08:25 PM
 
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SO we got blood work back form the geneticist. (the microarray) Clean. All her chromosomes are normal and no micro deletions.

This means that 1. She has something that has never been discovered OR 2. All of her ailments are coincidental.

I have no clue. Her main problems are her heart, kidneys and hearing. Well the heart can be a freak thing, the kidneys could have been from the traumatic birth(hypoxia) and the hearing loss could be from the meds at birth!

This is weird, isnt it? The geneticist also said that Sophias smaller eyeball and folded ear could have just been the result of her face being smushed in the womb, she was 11lbs5oz when she was born and was SOOO swollen.

Could it really be nothing? She was seen by the develop ped the other day and is at her age developmentally.



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Old 02-19-2010, 10:38 PM
 
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Oh my gosh, GREAT news! You must be so thrilled!! And...11 lbs 5 ozs? Wow! That is a big healthy baby! My heart guy was itty bitty at only 6 lbs 4 ozs and he was born a day after he was due.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 03-10-2010, 05:32 AM
 
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hey everybody! Just stopping in to bump the thread again and let you know we are gearing up for a bidirectional Glenn in less than two weeks! Julianne will be just five months old when they do it and I cannot wait to get this behind me, I am soooo nervous! you know what it's like to have OHS breathing down your neck! We just had a cath last week and they say she is a good candidate, so here we go!

I can't believe we even made it this far, thanks for all the encouragement when we needed it!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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Old 03-10-2010, 03:34 PM
 
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Prensa, Ive been thinking about you and the babe, wondering when the surgery was coming up.

From my experience, the Bi-Glenn was nothin. I say that, now, looking back of course. It only takes a couple hours (I think the actual surgery here took 45 min but all the prep work made it take like 4 or 5 hrs.)

Julienne is such a fighter already, you KNOW this is going to be a piece of cake for her!

Oops, babys awake, gotta go.

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Old 03-20-2010, 02:13 AM
 
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Whoops, I reread my last post and I messed up Prensa! I meant to say the SHUNT was short but the Bi-glenn was "nothin".


Our Bi-Glenn took about 9 hrs start to finish (from the second we gave her to the docs to the second we got to see her after the surgery) only because they found that she had another unseen defect (DORV) and fixed it while they were in there.

I was just bumping this thread to see how all our babies are doing! Sophia has SOOO much energy, Im exhausted at the end of the day. Shes just getting strength in her chest again (were 3 months post-op) and is still thiiiiiis close to crawling.

Hope all the other babes are doing well!


Sending positive and healing thoughts to Julianne!!!!!

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Old 03-20-2010, 10:23 AM
 
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Good luck to Julianne on her upcoming surgery! I hope it is uneventful with a fast recovery.

We're still doing really well, just the usual weight issues for my heart guy. He's almost 3 now and at 24 lbs and it took a lot of work to get here. We were moved to yearly cardiology appointments last may so his appointment is coming up soon.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 03-21-2010, 03:19 PM
 
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Hi Heart mamas, I have a question for you!

Connor has 22q, which is called VeloCARDIOfacial Syndrome. When he got the diagnosis of 22q, he was sent to cardiology and had an EKG and Echo which were both normal. The Cardiologist heard a Grade 1 murmur, but wasn't concerned in the slightest.

He's 3 now.

His growth has been very slow, and he's now being referred to Endocrinology for growth hormone testing. Endo called me with the appt, and said "we always send slow growth kids to Cardiac also, so they'll be calling with their appt soon." I explained that we had already been through cardiac, but they said to go back anyway.

I understand it's prudent to go, but what are the chances that something was missed?

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 03-21-2010, 08:14 PM
 
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If he's already had an echo done then they likely would have caught any major structural abnormalities. There is a small chance that he could have had a very minor abnormality that was missed but not too likely. How old was he when he had the echo?

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 03-21-2010, 09:01 PM
 
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If he's already had an echo done then they likely would have caught any major structural abnormalities. There is a small chance that he could have had a very minor abnormality that was missed but not too likely. How old was he when he had the echo?
He was 11 months when he had the Echo, and 4 weeks when he had the EKG.

I assume that we're still clear, but of course I'm going to worry now The geneticist said it was the lack of cardiac issues that delayed the testing for 22q. Cardiac issues are one of the hallmarks of the syndrome, so it threw everyone off. It's not unheard of to not have cardiac issues, but it's something like 87% of effected kids do.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 03-21-2010, 09:23 PM
 
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EKGs can miss heart defects because they only listen to the heart. An echo looks at the structure. Do you know which kind of defects are common with 22q? Usually when there is a major defect it will show itself before 2 yrs because the heart does most of it's rapid growth the first 2 yrs of life. It could show itself by causing breathing issues, possibly blueness (depending on the defect), poor weight gain and usually a loud murmur. My little guy went into heart failure by 2 weeks. In my experience, almost all of the kids I've known with major heart defects have had issues by 6 mos old.

A murmur can mean something mild like Mitral Valve Prolapse. I have it and have a mild murmur. It only means that my mitral valve prolapses a bit with each beat, sometimes causing the blood to flow backwards a bit (they call it regurgitation in the heart world). It doesn't bother my much besides the occasional dizziness when I overexert myself. I've had a murmur forever; it gets louder during pregnancy.

I know its hard not to worry when someone suggests that something could possibly be wrong with your child's heart but in your case I think the chances of a major CHD are very, very small. Try not to stress too much about it. Will he co-operate for an echo? Our cardiologist sedates kids for echoes from 18 mos to 3ish years with sodium bicorbinate (sp?). My guy had his first sedated echo last year and it was much, much easier on everyone that way.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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Old 03-21-2010, 09:33 PM
 
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ToF is the most common, obviously we would have found that by now. Right sided aortic arch is common and usually benign, but his echo was clear on that. VSD is common also.

I don't know if he'd cooperate, because of his pulmonary issues I'd want to try with no sedation. He can't be sedated safely, he needs full general. I bet he'd nurse during the echo and be fine.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 03-22-2010, 03:59 PM
 
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My son has TOF with the aortic arch, they were shocked when his 22q testing came back negative. I'd agree that you would know by now if he had any structural issues, especially if his last echo was at 11mos. My son has actually never had a sedated echo, well maybe in the NICU, but never any of his follow ups. A good PC should be able to pull it off. We had GERD issues and tracheamalacia in the early years, so sedating or general wasn't really a realistic option for each echo. I will say that the last thing they diagnosed was his aortic arch, they have to check so high up on the neck that our PC missed it. It was the cardiac surgical team that finally caught it the night before his repair at 4 mos old. But like I said, our PC wasn't looking for it. Sounds like yours did check that specifically.

Hope you don't end up needing the cardio check, but if you do, I'd insist on the non-invasive option. Especially if you think you can soothe him by nursing, at least give that a go first.
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Old 03-22-2010, 04:46 PM
 
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My son has TOF with the aortic arch, they were shocked when his 22q testing came back negative. I'd agree that you would know by now if he had any structural issues, especially if his last echo was at 11mos. My son has actually never had a sedated echo, well maybe in the NICU, but never any of his follow ups. A good PC should be able to pull it off. We had GERD issues and tracheamalacia in the early years, so sedating or general wasn't really a realistic option for each echo. I will say that the last thing they diagnosed was his aortic arch, they have to check so high up on the neck that our PC missed it. It was the cardiac surgical team that finally caught it the night before his repair at 4 mos old. But like I said, our PC wasn't looking for it. Sounds like yours did check that specifically.

Hope you don't end up needing the cardio check, but if you do, I'd insist on the non-invasive option. Especially if you think you can soothe him by nursing, at least give that a go first.
Does he have any other signs of 22q? How long has it been since his test? The FISH test is getting more accurate, so you might consider testing again.

Yes, he has GERD, laryngotracheobronchomalacia, dysphagia with aspiration. So we avoid sedation if possible.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 03-22-2010, 11:11 PM
 
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We actually have never seen a geneticist or a dev ped. We had the FISH test about 7 years ago (DS turns 7 end of April), once in conjunction with the amnio and again right after he was born. They also were looking at Dandy Walker Malformation, due to a red flag on his cerebellum during the level II. That was later resolved with an mri (last year actually), mri came back normal. I don't specifically recall the other markers for 22q, but he has hydropnephrosis, bi-lateral colobomas, intestinal malrotation and some other more minor issues. We had the mri b/c of an episode that was seizure-like.

The syndrome he seems to match is CHARGE. We basically came to that conclusion b/c a number of his specialists threw it out. But we've never had a formal diagnosis. He definitely has the balance and coordination issues, he receives OT, PT and ST. He was very late with his expressive language and was expected to have hearing issues which are very common with CHARGE. Somehow he escaped any ear issues, structural or otherwise.

I recently mentioned to DH that it might be time to see a Dev Ped to get the right diagnosis. Our ped was happy to write his CHARGE diagnosis based on our assumption, which was all the school district needed when he went to Kindergarten. But now that we are entering a new phase, some behavior issues, learning issues, etc. It might be time to sort through more thoroughly.

Since I've joined here, I read your posts though, the heart issues aside it sounds like our son's (mine is also Connor) have many similarities, or at least what you are going through given his age and what we did when my son was the same age.
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Old 03-31-2010, 07:04 PM
 
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Pimms, we have ToF w/ PS and DORV here. Our docs were shocked when the 22q came back negative too. They advised us to put Di George on her med alert bracelt, thats how sure they were!

Lots of genetics tests, NO Dx. Her geneticist actually said that her 3 main med problems (heart, kidneys and hearing) might actually be completely independent of each other! Its so crazy. I hope you get some answers!


2boyzmama, I didnt realize your lo and Sophia had the same problems! GERD and dysphagia. They want to sedate Sophia to get an accurate hearing test but I refuse for personal reasons (like shes been through enough already!). What is it with the GERD and dys that makes you not sedate?

Some GREAT NEWS today!

Sophias calcuim labs came back and shes absorbing calcium FINE!! NO more supplementing!!!!!!!! That brings our meds down to 7!!! (was 12 whan she came home from the NICU). Now we just have to work on getting those kidneys healed and blood pressure down!

YAY! Great day!


Prensa, hope the baby is recovering well!!

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Old 04-15-2010, 12:10 AM
 
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Just bumping and wondering how our heart babies are!


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Old 04-19-2010, 08:48 PM
 
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SO we got blood work back form the geneticist. (the microarray) Clean. All her chromosomes are normal and no micro deletions.

This means that 1. She has something that has never been discovered OR 2. All of her ailments are coincidental.
There are also other possibilities, e.g.:

3. Exposure to something teratogenic (e.g. chemical spraying or maternal illness) during a particular time in pregnancy.

4. Placental problems causing restricted blood flow, leading to abnormal development of organs.

5. "Mosaic" chromosome disorders, where the affected chromosomes are only present in certain tissues of the body, so they don't show up on a blood test.

From what I've been told, about 25-30% of children with apparent syndromes (i.e., multiple disorders that are thought to be related) don't have any overall diagnosis, genetic or otherwise. The figure is even higher for children who have multiple structural malformations with normal language and social development. Genetics told us up front that it was unlikely they'd find a "label" for our DD, because she doesn't have a developmental delay. As they'd predicted, her microarray came back normal.

Some of the structural malformation syndromes that we've come across include VACTERL, Goldenhar, and Klippel-Feil. None of these is a match for our DD's issues, but they've been interesting to read about all the same.
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Old 05-01-2010, 04:04 AM
 
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Lindsay and Jilian thanks for the well wishes! I've been so busy I forgot all about this thread for a little while. My detailed updates are on my blog but she had her bi-directional Glenn on March 26 and we came home 5 days later. She's doing really well, and I couldn't be happier. It's such a trip to go back and read my posts in this thread, I remember thinking I would never get to this point and now here I am. Life is good!!

Lindsay your update is fabulous! here's to fewer meds!!

hi to everyone else!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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