The "heart" thread (CHD) - Page 3 - Mothering Forums

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Old 11-13-2009, 03:51 PM
 
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Sophia was NG fed exclusively for the first year. 24/7 feedings - no boluses. We used a kangaroo feeding pump. She also took Lasix, digoxin and ASA for the first year (until after the Glenn). The ASA she maintained until the Fontan and then at age 4 (after Fontan) she began 2mg/3mg of Coumadin. She began swallowing coumadin pills at this time.

Laura
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Old 11-14-2009, 03:18 AM
 
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My son (HLHS) came home breastfeeding and was breastfed/bottle fed expressed breastmilk and human milk fortifyer for just over a year. He came home from his 1st surgery taking lasix, digoxin and baby aspirin. Now post fontan (3rd surgery) he takes lasix, spirinolactone, digoxin, lisinopril and baby aspirin.
My daughter came home on digoxin but no longer needs any med.

We have never had a pulse ox macine or any other medical equipment at home.

Presna....you and your daughter are in my prayers. It does get better.
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Old 11-14-2009, 04:57 AM
 
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Prensa, just saw your sig. My daughter with CHD is also our third child, and the older ones were just 2 and 3 when she was born. I remember one day driving back from the hospital, it hit me that I was now a mother of three. It seemed unreal, because I wasn't really taking care of any of them.

Although it was really hard to feel pulled in different directions, I think having the "big kids" made things easier in some ways. We were able to bring our baby girl home to an established, fairly normal family environment, and we were pretty confident about all of the everyday care and feeding matters that started to take center stage once she was ready for discharge. I felt sad for the mothers and fathers who were going through all the CHD stuff as first-time parents... though I'm sure they also felt sad that I had to leave my DD's bedside so often to go check in with my other kids. It was just hard all around.

I know this might seem far off on the radar screen, but I hope you're able to get help lined up for when your baby comes home. I didn't do so myself (we could have afforded a mother's helper, but I was too frazzled to make the arrangements), and I really regret it, because things were far too chaotic in our home for far too long. After all you've been through, you're going to need the time to relax, decompress, enjoy your baby, and reconnect with your other children.

Keep us posted -- the little ones and I will be praying for your whole family.
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Old 11-16-2009, 10:47 PM
 
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Sophias big repair is coming up next Tuesday the 24th. Ive been excited because this means that we are moving towards normality but today, when i realized I can say "surgery is next week" I started freaking out!. Im so scared and Im so dang emotional. It just doenst seem fair that she has to go through this. She is so small and happy and Im just so sad for her.

Please tell me you guys freaked out before the surgery! I was so calm last time and Ive BEEN calm this time, till today!

wife. dd1 : dd2
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Old 11-16-2009, 10:59 PM
 
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I'm sorry Lindsay We were lucky because DS2 was diagnosed at 2 weeks old and within a few hours he was in emergency surgery so there was no time for me to prepare. But yeah. I freaked out. Freaked out is an understatement. I lost my sh**. But his surgery was emergency and we weren't sure he'd survive because he was so bad off, etc. From what I hear the older and more stable the child is the better the surgery and recovery go. I still can't imgaine knowing it is coming and having to count down the days. My heart goes out to you. Try to distract yourself and do things to keep your mind off of it. I'm sure her surgery will go just fine. Thinking of you

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 11-18-2009, 02:37 PM
 
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Today is a LOT better. Im done freaking out and Im ready to get this surgery over with! The first surgery was at 6 months and kept being delayed every week because of her health issues. Now she is in a GREAT place heath wise, and they are ready to get her surgery done earlier than they normally do it! (they normally do 5 months to 1 year after shunt is placed and they talked about it when she was 4 months post shunt)

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Old 11-19-2009, 12:28 PM
 
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Lindsay that's great! I'm glad that you are not freaking out as badly, I know that we will be facing another big surgery in a few months and I can't imagine how hard that will be. I'm sure it will go smoothly for ya!

we are "graduating" from the PICU today and moving up to the children's hospital where I will be taking over more of her care and getting ready to go HOME!

she's finally on feeds now, getting 40ml every two hours through the ng tube, and other than that she's almost wire free! there's a sat monitor on her hand and a blood pressure cuff on her leg, some electrode stickies on her chest and an IV in her foot that isn't connected, it's just there if they need it. she's getting viagra and aspirin in her tube and that's it!!

I almost can't believe how far she's come! thanks you guys!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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Old 11-19-2009, 04:23 PM
 
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OMG Prensa!!! That is wondeful news! :

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 11-20-2009, 02:50 AM
 
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Yay Prensa!!!!!!! Wow, that seems awfully quick to be so tube free, she must be quite a baby!!!!!

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Old 11-25-2009, 01:22 PM
 
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Originally Posted by Lindsay1234 View Post
Sophias big repair is coming up next Tuesday the 24th. Ive been excited because this means that we are moving towards normality but today, when i realized I can say "surgery is next week" I started freaking out!. Im so scared and Im so dang emotional. It just doenst seem fair that she has to go through this. She is so small and happy and Im just so sad for her.

Please tell me you guys freaked out before the surgery! I was so calm last time and Ive BEEN calm this time, till today!
We're looking forward to an update Lindsay...praying everything went well!

I remember having alots of "ups and downs" before surgery. I would totally be calm and full of trust and than whammo, fear, anxiety, tears.
I am not looking forward to ds's next surgery. So far we are told he's okay to wait until the new year, but even having that time doesn't ever make me forget or calm down...its like a huge storm cloud that I can see in the distance...looming and glaring its rage my way

Prensa That is wonderful news, you have been on my mind alot lately and your positive update is truly a blessing!

~Kelsey

wife & mum to 9yo dd, 7yo ds1 & 5yo ds2 and our rescue dog Roger!
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Old 11-25-2009, 01:39 PM
 
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She made it!!! She had her surgery yesterday and when they got into her heart, it was the worst case scenario, but they had planned for that just in case so it went smoothly. Shes considered a "double outlet right ventricle" ToF, have you heard of that? The surgery took 6.5 hrs, so we were FRAZZLED by the end!

Besides a tiny bit of hypertension, she is doing great! Illpost more when I have more news, Im off to the hospital today, they are going to try and take her off the vent!

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Old 11-25-2009, 04:36 PM
 
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She made it!!! She had her surgery yesterday and when they got into her heart, it was the worst case scenario, but they had planned for that just in case so it went smoothly. Shes considered a "double outlet right ventricle" ToF, have you heard of that? The surgery took 6.5 hrs, so we were FRAZZLED by the end!

Besides a tiny bit of hypertension, she is doing great! Illpost more when I have more news, Im off to the hospital today, they are going to try and take her off the vent!
I'm glad they were prepared and it went well. I've heard of that before, I think one of DS's hospital roomates had that. I hope removing the vent goes well. Thinking of you!

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 11-27-2009, 06:10 PM
 
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Sophia is doing great, almost no meds, no vent, only 1 IV. The surgeon said that if she didnt have high blood pressure, she could have come home TODAY! (THREE days post-op!) But we WILL get her home Monday or Tuesday!!!

Her drain hole is stitched closed this time, I didnt have to deal w stitches last time!

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Old 11-27-2009, 08:04 PM
 
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Thats wonderful news Lindsay, what a true to the purpose reason for "Thanksgiving".
Blessings to you and your family

Thanks for updating so soon!

wife & mum to 9yo dd, 7yo ds1 & 5yo ds2 and our rescue dog Roger!
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Old 11-27-2009, 09:03 PM
 
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Hi all!

 

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Old 11-27-2009, 09:05 PM
 
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Hugs and blessings to all of you dealing with surgeries. Lindsay - I'm so glad that your LO is almost ready to go home!
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Old 11-27-2009, 10:59 PM
 
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Veganone, Sophias heart surgery was kind of the worst case scenario because they cant pick up everything from an echo. They ended up planning for the worst because they had to wait until they were in her heart to see the rest. I have Dr. Van Gundy, and he is in his own practice and works at all the hospitals and has 2 offices. You should definitely change if you arent satisfied. Who was the anesthesiologist? We had Dr Leeman for the first surgery and he is so amazing, we requested him again. Sophias stats are normally 70s, so she desats in the 50s. I understand how crazy that is when it happens.

Your dd might not tolerate a certain type of anesthetic. Maybe write down the type for future reference? Ive heard of Dr Parrish but nothing about him at all. Please let Dr Raff/Dr Si do any repairs if needed, not only are they amazing surgeons but truly amazing men.

VSD, hole between left and right lower sides of heart
ASD, Hole between left and right upper sides of heart

Is this right?

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Old 11-28-2009, 04:39 AM
 
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What hospital is your DD at?

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Old 11-28-2009, 01:32 PM
 
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On Dr's finding new defects:

I so hear you! Ds was diagnosed as only having a moderate VSD (no need for immediate sugery at the time), we stayed with this PC for almost a year while she assured us he was totally fine and would likely never require surgery. One appointment she figured, lets try and see if we can get a good pulse in his legs/groin (grrrrr that she never did that prior) and low and behold his pressures we well below normal (I wish I could remember the numbers at that time ) We were sent for an echo and were there for over an hour and the tech had our PC paged, I just knew something more serious was happening. The PC didn't explain anything (jerk!) and told me that our local Childrens Hospital would call me with a date for a sedated MRI scan.
3 days later we were there, 2 days after the scan I got a call from the hospitals PC Nurse that his OHS would be 4 days later!! WTHeck! My PC NEVER called me and gave me any warning whatsoever. Needless to say she is no longer our PC, we decided to happily make the hour long trip directly to the hospital for all follow-ups.
Sorry for the long post!
Anyways, so after the MRI we were told at the hospital that he also had CoArc Aorta that required repair asap. The surgery went as well as could be expected, he was 18mo and healthy (I'm sure handing over an obvioulsy ill child wouldn't be easy, but handing over a child who looked perfect on the outside, totally trusting they they were taking only necessary steps, was horrible). His first post-op echo we were told they discovered a bi-cuspid aortic valve...I can only wonder how they never saw that before...echo after echo, MRI, OHS...
It was mild then but now its caused a subaortic membrane so we'll be heading in for another OHS before Spring.

Again, sorry for hijacking...it just struck a thread inside to hear about this issue.

wife & mum to 9yo dd, 7yo ds1 & 5yo ds2 and our rescue dog Roger!
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Old 11-28-2009, 01:45 PM
 
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How terrifying that must have been! Thanks for sharing that. I'm very sorry that your LO has to have another surgery.
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Old 11-28-2009, 02:27 PM
 
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Faithfulone, that is horrible!!! I cant imagine how scary that was but Im so glad it worked out for the best!

Veganone, shes at UCDavis right now, Im actually on my way to visit her! Its where every single one of her docs and procedures have been done.

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Old 11-29-2009, 08:29 PM
 
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hey guys, checking in!

Lindsay I'm so thrilled to hear Sophia's surgery went well! Hope you are home in no time!

speaking of home, we got discharged on the 27th! Woohoo! After 42 LONG days in the hosp I am so happy to be HOME!

we came home on Lasix, ranitidine (zantac), sildenafil (viagra) and baby aspirin, nystatin for thrush and an oximeter that we only have to use twice daily, a scale, a weekly visiting nurse and strict orders to call the docs if she doesn't gain weight for two days in a row. overall not bad, but the feeding is stressing me out BIG TIME

they insist she needs extra calories, so I have to fortify my milk, which means I cannot nurse, and she has a minimum intake that she still has a hard time meeting (the worst is when it takes her 45 minutes to finish her measly 48ml and the PUKES it all up, what a waste of energy!)

I hate that I have to feed her with a stupid bottle. Ugh. but it won't be like this forever...just until she gets strong enough to really be able to feed.

oh and pumping AND feeding a baby every three hours is as close to having twins as I'll ever get I spose, minus all the super cute twin photo ops! but MAN! I am exhausted!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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Old 11-30-2009, 12:34 AM
 
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Prensa, your homecoming with your lo sounds EXACTLY like Sophia, almost all the same meds, BIG time puking, charting, fortifying, etc. but after the surgery no charting, fortifying and less meds and puking! Ive seen her change her puking habits already! For coming home!

Big news...

Sophia comes home tomorrow!!!!!!

She is back to normal! She was trying to roll in her bed today and shes OFF lasix already!!!! Shes doing so great!

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Old 11-30-2009, 01:20 AM
 
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YAY SOPHIA!!! I'm so happy she's coming home tomorrow and wow, she's off lasix already?! You must be so excited!

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 11-30-2009, 02:45 AM
 
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So glad Sophia is coming home!

Prensa - so glad your LO is home! DD didn't need fortifying, but she triple fed (35 weeker) for about 10 weeks. They had us on a 2 hour cycle, and it was brutal. It WILL get better! Are you triple feeding, or just pumping? (Nursing, then supplement with bottle/pump.)
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Old 11-30-2009, 02:17 PM
 
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pumping and bottle feeding with fortified BM to 26 cal/oz with enfamil (UGH!!!) every three hours, 48cc minimum. yup, brutal.

I do nurse for comfort occasionally, even though I'm not supposed to, but it's good for me to see she still can nurse.

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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Old 11-30-2009, 05:04 PM
 
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That's great that she can latch and comfort nurse some. It's probably good to remind her how to do that. DD had plenty of bottles, but nursed like a champ until she was 2!

Thinking of Lindsay and Sophia going home!

Does anyone know of a site that shows what sizes correlate with the different grades of septal defects? I know the sizes of DD's, but not the grades for them at the moment.
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Old 11-30-2009, 08:13 PM
 
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they insist she needs extra calories, so I have to fortify my milk, which means I cannot nurse, and she has a minimum intake that she still has a hard time meeting (the worst is when it takes her 45 minutes to finish her measly 48ml and the PUKES it all up, what a waste of energy!)

I hate that I have to feed her with a stupid bottle. Ugh. but it won't be like this forever...just until she gets strong enough to really be able to feed.

oh and pumping AND feeding a baby every three hours is as close to having twins as I'll ever get I spose, minus all the super cute twin photo ops! but MAN! I am exhausted!
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Prensa, your homecoming with your lo sounds EXACTLY like Sophia, almost all the same meds, BIG time puking, charting, fortifying, etc. but after the surgery no charting, fortifying and less meds and puking! Ive seen her change her puking habits already! For coming home!

Big news...

Sophia comes home tomorrow!!!!!!

She is back to normal! She was trying to roll in her bed today and shes OFF lasix already!!!! Shes doing so great!
This sounds just like when Connor was a baby. I would exhaust myself pumping, would fortify my milk, then spend about 2 hours trying to get him to suck it down. I would often syringe feed him as that was easier than getting him to suck. Then he would just vomit it all up! As soon as he got an NG tube the vomiting stopped. And now the only time he vomits is due to reflux. But he also had major sucks issues from his chromosone deletion and he wasn't able to normally suck from a bottle until age 1 1/2. Breastfeeding never happened. But if he had been able to then I would have definitely snuck in nursing sessions and not worried so much about all the calories. You could always syringe in some olive oil for calories after you're done nursing (check with the nutritionist first). Connor's milk had to be fortified with both formula and olive oil.

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Old 12-01-2009, 05:42 PM
 
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Were home!!! We got home yesterday at 3pm.

Sophia is a different baby! Same personality, of course!

She has more energy to smile, laugh and even talk! She was pretty much silent up to surgery, and we thought it was because of damaged vocal chords. The surgeon thought he nicked 'em when he did the echo scope on her but the ENT came in and said she was fine. Then all of a sudden we heard her cry and coo!!! She sounds like a normal baby now! (after 7 months of barely any noise)

Also, she hasnt puked in almost 35 hrs! We were dealing with 1 to 2oz puking 8 to 10 times a day and now...NOTHING!!!! I even pushed the rate up on her gtube pump and still no pukes.

I knew the change would be drastic, I just had no idea how amazing it would be.


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Old 12-01-2009, 05:45 PM
 
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veganone, I googled the VSD grade sizes and got a whole bunch of pages that are written in Dr speak. Ill keep looking though.

Im going to the cardio on Mon, Ill ask if they have one.

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