DownSyn Forum

cassangel · Posted: November 01 2008, 11:57 AM Post subject: Gavin has ASD not VSD

I took Gavin for his 2 week check up yesterday and the pediatrician that saw him in the hospital told me wrong, the picture he drew was wrong....... Gavin's heart defect is an ASD not VSD. He has a moderate size hole separating the upper two chambers of his heart, not the lower two. I am hoping it will still close on its own. He will see a pediatric cardiologist around Nov. 24th when he is around 6 to 8 weeks old to evaluate him. My nerves cannot handle heart surgery Sad

He weighed 7 lbs and 14 oz so he is not at his birth weight yet of 8 lbs, 6 oz. I got to take him next Friday for another weight check.

I am still pumping and giving him breastmilk in a bottle. I often have to add an ounce of formula because he drinks 3 oz and I am only making 2 ounces. I got the RX for Reglan and am gonna take that to increase my supply. I also learned yesterday my nipple is too big for his small mouth. I still offer him breast though hoping when he gets bigger he can nurse.

The doctor told me he overall looks good though and his ears/hearing is fine.

Prayers are appreciated regarding his heart Smile

Thanks for listening Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

violettesmom · Posted: November 01 2008, 11:59 AM Post subject:

Keep an eye on yourself on the reglan...it will increase your supply but for some women it also causes depression - just be aware of that in case you see signs!

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cassangel · Posted: November 01 2008, 2:17 PM Post subject:

Someone told me that so I had not filled the prescription for a week or so but yesterday I asked the pharamist and he said it did not cause any psychological issues....... go figure. I have already been emoitionally depressed off and on and do not need it to be worse. I will not take it for now.

Thanks Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

Amy · Posted: November 01 2008, 2:26 PM Post subject:

It really didn't help me to produce more milk.. and i was depressed as well. I think it was the pumping that depressed me. lol
I think you are wise to back off the meds.

That's good news on the heart. I hope it will close on it's own as well. But take courage, Austin had a severe condition called Tetralogy of Fallot. (It's four defects, a PDA and he had a smaller defect as well) He had Open heart surgery at 7 days old! He recovered relatively quickly and is now a mischievous mess.

Good news on the hearing!! Keep us updated on his heart.

_________________
Keep the Faith, Amy
Mom to Kristin (26) Jessica (24) Rebecca (21) Rachel (16) Sarah (14) Hunter (11) & Austin (7) DS

WilliamTheOutlaw · Posted: November 01 2008, 2:32 PM Post subject:

Maybe try porridge (oatmeal) every morning. That might just be all you need!

Lu

_________________
Please follow Reece's Rainbow on twitter: http://twitter.com/ReecesRainbow

www.poppiesblooming.co.uk

Lucille's blog: www.thepoppiesblog.co.uk

twitter: http://twitter.com/PoppiesBlooming

Googsmom · Posted: November 01 2008, 7:32 PM Post subject:

Although I didn't breast feed any of my kids my Gramma used to say oat meal too. Do you like oats?
Brook had an ASD when she was born. We went to the heart doc at 1 mth old and 6 mth old. At yr old appt they had a heck of a time finding it. They said they just saw "reminants" of where it was/is. We don't have to go back until 2010 Very Happy

I pray it has closed up by now and is all better Very Happy

I've heard good things about ASD's closing up on their own.

_________________
Jennifer, Momma to The Brookster 4 yrs old

www.specialneedsinmolalla.blogspot.com
www.foundalongthejourneythroughholland.blogspot.com

kzmom · Posted: November 01 2008, 10:41 PM Post subject:

That sounds like exactly what Katelyn has- she has a small- moderate sized ASD. When we took her in for her check at about 4 months, they said they weren't going to do anything except monitor her and that lots of people have them with no problems at all. So we are just hoping it closes and honestly we really don't think about it much anymore. She will go back when she is a year.

It took her a long time to get back up to her birth weight too! She was over 9 pounds when she was born, and then she was stuck in the 8 pound range for over a month! I had to add formula (without water) to her breastmilk as a calorie supplement for awhile.

Good news on the hearing & we're hoping that his heart is okay!

_________________
______
Kristen
Mom to Zach (Jan 2005) and Katelyn (Feb 2008 DS)

earlyam · Posted: November 02 2008, 6:16 AM Post subject:

Hi Cass

Our little ones sure know how to keep their mummies on their toes Very Happy

I'll be thinking of you both when you have your cardiologist appointment.

It sounds like the feeding / pumping is starting to fall into place Very Happy

It also sounds real positive about his heart, especially as they don't need to see Gavin until he's 6-8 weeks!

_________________
Jo, Mum to Georgia 11/11/03 ( BIG High School Musical fan) and Ethan 16/12/07 (DS)

cassangel · Posted: November 02 2008, 6:06 PM Post subject:

Thanks ladies Smile

He seems great regarding his heart; no blue discoloration anywhere etc. He has been eating great all weekend, 3 oz every 2 to 3 hours and wetting and having a BM much more frequently Smile

I just love him so Smile

He is just so cute! Smile

We are adjusting well thanks so everywhere here and the info I have read Smile

Thank you!!!

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

momlorac · Posted: November 03 2008, 11:17 AM Post subject:

I also added calories to my breastmilk for Abigail. They made it so it was 24. Abigail had one hole in the upper chamber and one in the lower. She had heart surgery at 5 weeks. She was a little over 6 pounds. She is 4 now and doing fine. Glad he eating from the bottle. Sounds like he is doing fine congratulation .

_________________
Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

cassangel · Posted: November 03 2008, 11:39 AM Post subject:

Thanks Carol Smile

He is eating great from the bottle (playtex drop-ins) Smile

He is not sleeping as much and actually lets me know when he is hungry now Smile

He seems good. I hope and pray his ASD closes on its own Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

Momma2Bean · Posted: November 04 2008, 8:50 PM Post subject:

hi, Lucas had a small VSD at birth which closed by the time he was one. Unfortunately, at one he was diagnosed with a tiny ASD which the cardiologist and heart surgeon do not believe will close. Because the location of the ASD, he's not a candidate for a device but will need open heart surgery -- although it's not a life-threatening issue, the team of cardiologists believe it is a preventative measure to ensure he doesn't develop pulmonary hypertension in the future. Although we were very upset at first, Lucas will be in the hands of an amazing surgeon at Miami Children's Hospital. I hope you have better luck and that your baby's ASD closes on its own -- perhaps because he's so little that plays a factor as well. Wishing you all the best!

_________________
Sandy, momma to Lucas "the bean" (10/15/06)

cassangel · Posted: November 04 2008, 9:14 PM Post subject:

Thanks Sandy for replying Smile

I feel for you and your lil' man. I hope the surgery goes well! I pray Gavin's closes because I do not know if I can handle the stress of it all Sad

You are in my thoughts! Keep me posted Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

mellysmom · Posted: November 08 2008, 8:01 PM Post subject:

Cassandra,

I just wanted to let you know that Melissa had a moderate sized ASD. It closed on its own by her second birthday. The doctor said the hole was so small that it did not require surgery or his services any longer.

Also, my pediatrician told me that if it didn't close, we would have been sending her to Boston Children's hospital to have it closed using a catheter. Her in RI the doctors wanted to do open heart by pass surgery. Her ped and I decided no way, especially since Boston could do it with the catheter . ( They go through an artery in the leg.)

I have a friend who told me to eat black licorice for PPD. It's always worth a try. Smile

Keeping you in my prayers. These sad days do pass. They really do.

Michelle
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schrom photos

lespring · Posted: November 08 2008, 9:15 PM Post subject:

Angela had a 9 mm ASD. (I don't know if that's considered sm/med/large?) And hers was a right to left shunt. She was on lasix until sometime around a year old, while we had a goal of getting her to 10 lbs so they could do surgery. By the time she reached 10 lbs she was pretty stable, and we decided her reflux needed to be dealt with before her heart, as the reflux was what was damaging at the time.

We monitored her until she was 3, with cardiology check-ups every 4 months, with the size of the defect never changing, but her remaining stable. Finally we went for the final appointment where we were supposed set a surgery date. And? VIOLA! It had closed on it's own!

So, Angela never needed a repair!

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Chirsty(lilly'smommy) · Posted: November 08 2008, 9:54 PM Post subject:

Lilly was diagnosed prenatally with a small VSD, but by one year it had closed. Somehow, they discovered an ASD at that time though... I do not know the size, but they described it as the size of a pencil eraser!! sounds pretty huge to me!. I've never understoud how this was not detected until one year. But, she sees the cardiologist every 6 mo. and if it does not close by 3 years, she will need to have it closed due to the risk of pulmonary hypertension. They recently sent the pics to the surgeon to determine if she is a candidtate for the closure devise... which is what my prayers are on. Until reading this post, I sort of gave up on it closing itself.

_________________

Christy,
Wife to Bryan
Mom to Lilly (DS) 2/07, Savanna 8/10

cassangel · Posted: November 09 2008, 9:27 AM Post subject:

Thank you so much for the feedback Smile

I am feeling much more hopeful now that his ASD might close on its own and not need major surgery Smile

This is my prayer Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

EVsMommy · Posted: November 10 2008, 11:07 AM Post subject:

Evelyn had 3 holes at birth. By her 6 month check with her cardiologist she only has the ASD remaining. Her VSD and PDA have closed on their own!! She always amazes me with her strength Smile

We are praying that at her 1 year check up she will have healed her ASD too!

Good luck with Gavin, with some prayers and hope Im sure it will close up!

_________________
Stefanie
Mom to Evelyn (02/19/08 ) and Sarah (06/16/09)

www.thefarhatfamily.blogspot.com

hannah · Posted: November 10 2008, 1:23 PM Post subject:

Hannah also has/had ASD. She routinely saw a Cardiologist and was discharged around 2yrs of age. Hers closed on it's own. She does have a slight heart murmur but doesn't need to be premedicated before surgeries or dental procedures.

Hoping Gavin's closes on it's own!!!!
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Kidney Disorders Forum

cassangel · Posted: November 10 2008, 4:45 PM Post subject:

Gavin has a heart murmur too they say is related to the ASD. I am so glad so many heart defects have closed on their own Smile

That is so awesome for your babies Smile

God Speed

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

mommy to Zoe Cecilia · Posted: November 12 2008, 10:47 PM Post subject:

Congrats on your angel! He is super cute! Zoe had the same thing, ASD two open chambers, at her cardio appt when she was about a month old one the chambers had closed and the other had decreased in size... we went at 6.5 months and the hole was still there... the doctor said they have a new "less invasive" surgery to close the hole... I wasn't so happy with the news but it definantly could have been worse. Just keep positive, God will never give you more than you can handle.
As for bf-ing/ pumping GO YOU! I am coming to an end of BFing but up until last week Zoe was only Breastfeed. (the doc said my milk supply must be down because her weight gain was not suffienct so we're supplementing but still bfing) Anyway I had many problems with bfing at first too! I pumped for the first 11 days zoe was in the NICU then I BF from then on... it was super hard and Zoe had a hard time latching but I stuck to it and had a lot of great support! I wish you all the luck in the world! Gavin is a cutie!

_________________
~Zoe

DH ~ Jeremy married 3yrs together 9
DD ~ Zoe Cecilia ~ 2-4-08(DS)

mommy to Zoe Cecilia · Posted: November 12 2008, 10:50 PM Post subject:

cassangel wrote:

Gavin has a heart murmur too they say is related to the ASD. I am so glad so many heart defects have closed on their own Smile

That is so awesome for your babies Smile

God Speed

OH I FORGOT TO MENTION THE BEST PART! At Zoe's 9 month appt. last week the pedi couldn't hear her heart murmur she once had!!! (an indicator that the hole could have closed!! yupppeee) We won't know for sure until her next cardio appt in 4 months... BUT my dad who is a nurse had told me before we went to the appt that he couldn't hear the murmur anymore and couldn't understand why!!! So the doctor called in the other doctor to see if for some reason she just couldn't hear it BUT nope he didn't hear it either!!! WOW! Miracles! Our babies are so amazing! ;o)

_________________
~Zoe

DH ~ Jeremy married 3yrs together 9
DD ~ Zoe Cecilia ~ 2-4-08(DS)

cassangel · Posted: November 13 2008, 8:43 AM Post subject:

Zoe! That is awesome the murmur is gone! I hope and pray her hole has closed! Smile

_________________
Love~

~Gavin Russell~

~Born 10/16/08 with DS~

"For you created my inmost being, you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made, your works are wonderful, I know that full well." Psalm 139:13-14
~God does not make mistakes ~

http://myangelgavin.blogspot.com/

AMTJmom · Posted: November 13 2008, 5:50 PM Post subject:

Our Jack was born with an ASD, a VSD, and a PDA. They were too big to close on their own and open heart surgery was our only option since he did have pulmonary hypertension. We had an excellent experience with surgery, wonderful recovery, and now we have no worries! I know surgery is serious, and scary, but it's worked out so well in our case. Jack is now 2 and into everything!

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Julie - wife to Allan (5-90),mom to Andrew (6-93), Madelyn (3-96), Tyler (11-98 ), Jackson (ds 10-27-06), and Dashlyn! (ds 3-21-08 )

[url=http://www.TickerFactory.com/]

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MommyAngela · Posted: November 13 2008, 10:58 PM Post subject:

Awww...I know it's overwhelming. Please know that heart surgery, if he has to have it, is NOT the end of the world. It seems really daunting but to those surgeons, an ASD is a walk in the park!! Benjamin had his ASD and VSD repaired six short weeks ago, and he's perfectly fine!!

_________________

Angela
Wife to Matthew
Mom to three wonderful sons:
Andrew James--3/24/06
Benjamin Matthew--4/24/08 DS--VSD & ASD repaired 10/3/08, intestinal obstruction repaired 1/13/09, hypospadias & ventral hernia repaired 8/21/09
Thomas Alexander--3/25/10

www.theamicks-angela.blogspot.com