The "heart" thread (CHD) - Page 3

[Jilian]

Prensa, I'm keeping you and your baby girl in my thoughts too. The first week is the absolute hardest. I hope it is all smooth sailing from now on. Rest as much as you can because you are going through a lot too. When DS2 was recovering he was on paralytics for a few days and during that time I sat by his bedside and journaled about his progress (so he can read about it later) and read him stories and told him about all of the fun things we were going to do when he was feeling better. I also kept notes about all of the meds he was on and when his doses were due, it helped me to feel like I was somewhat involved with his care and recovery.

[Prensa]

thanks, everyone! I've been journaling in a blog so my familiy can keep up with what's going on, this little laptop was a gift from my dad and it's been an absolute lifeline for me while in the hosp. They are closing up her chest as we speak and I'm hiding in the cafe until they say I can go back down to see her. So far she's been healing and recovering really well...I just hope things continue to improve, although I know how up and down the whole process can be.

Thanks for all the kind words you guys!

[Jilian]

I hope the chest closing went well and she recovers quickly now.

[hollytheteacher]

Thinking of you Presna! Wishing your dd quick, wonderful recovery vibes!! I know what you mean about looking forward to the day when you can just be looking back at all this! You'll get there faster than you know it! I remember other heart mamas telling me the same thing and I really didn't believe them, yet now i can't believe I have a two year old (who is almost coming up on his two year anniversary of his surgery in Dec) who is so normal that i'm also on here writing a post about how frustrating it is when he's not listening to me!!! lol

[FaithfulOne]

Thats great news!
The Drs wouldn't be closing her up yet if they weren't pretty darn sure she was going to continue with her progression!
I'm so glad you have been keeping busy and that you too are doing as good as can be!

[Lindsay1234]

Hoping everything went well Prensa.

[EarthyMamaofDaisy]

Prensa congrats! We live in NH and I had to birth at Brigham & Women's so my DS could get transferred to Children's. He was there for a week and then went back at 2 months old for open heart surgery. He had a CAVC, mildly hypoplastic left ventricle (not quite small enough to be HLHS), a stenotic pulmonary artery, his mitro and tricuspid valves were deformed and he's missing a left pappillary muscle. We found out this year he has a chromosone defect and oddly his heart problems are the least of his trouble. He has some pretty bad feeding issues which we are working on. Anyway, he's 2 1/2 now and we will go back to Children's at some point for a valve replacement surgery. We're hoping to get him much bigger before his little restructured valves totally fall apart.

I'd really love to get one of those books that explains heart surgery to him. I think it would be good to start to prepare him emotionally for his next surgery.

[Prensa]

hey heart mamas

Julianne is doing really well, they had her off the vent for a few days but then she started having really low sats again and suddenly an arrhythmia showed up so they reintubated her and today she's having a stent put in her BT shunt to straighten it a little and hopefully improve the flow.

if that works they will try to get her off the vent again and hopefully try to feed her again, when she's upset now I KNOW it's because she's hungry, it is SO HARD to not be able to feed her! it breaks my heart to see her cry (that horrible noiseless vent cry, poor baby!) and I can't even pick her up or anything. At least she can have a paci which does help her calm down, but it's hard to watch her suck on that rubber thing when I know what she needs is her mama milk!

just a few more days, just a few more days...this is so hard

[skyebones]

Prensa, I don't often post on this site, but saw your post about your daughter. My Sophia has pulmonary atresia intact septum with multiple coronary sinusoids. Sophia was born on 4/25/01 at Rainbow Babies in Cleveland. Our first year included exclusive NG feedings 24/7 - she was not stable enough for breast or bottle. Hang in there. I *so* known how overwhelming this all can be, but Sophia is 8 now and in the 3rd grade!!! I don't wear rosey colored glasses, but I also refuse to have a negative attitude about this crazy world of CHD. There has to be a reason for all of this. I just wanted to let you know, like the other ladies have, that you are not alone. There may not be a huge group of us out there that have children with significant heart defects, but I know what you are going through and I will be thinking about you. I'm on facebook (Laura Dienes Hackathorn) if you would like to see pics of Sophia!

Take care,
Laura

[LauraLoo]

Originally Posted by Prensa

just a few more days, just a few more days...this is so hard

It is hard. Stay strong - you can make it! We're all pulling for you and sending you lots of

[Lindsay1234]

Prensa, Ive been waiting for you to post an update! I think we all really understand the feeding thing. Its so frustrating. My daughter had a hard time coming off the vent too, it took her 3 times!

When are they putting the stent in?

Skyebones - I have a Sophia with ToF and pulm stenosis. Its nice to hear yet another success story! 8 years old, thats awesome! Were about to have our final big repair on Nov 24th and we are so excited to just get back to normal!

[Jilian]

Prensa, the doctors warned us that coming off the vent is very hard too. I think it is really common to come off and go back on a few times. I hope she is able to come off for good soon. The feeding part was the hardest for me too. DH had to comfort DS a lot until I could feed him again because it got to the point that every time he saw me he would start rooting and get really upset until I left. It does break your heart but it is only temporary. Hang in there mama. Sending lots of love to your baby girl.

[Prensa]

thanks for thinking of us you guys!

they took her to the cath lab yesterday but they decided last minute not to do the stent. I think they had trouble getting into her artery and didn't want to go to surgery so they ran her numbers again and decided to try extubating her instead. I'm sitting here right now waiting for the last blood gas to come back and then they're gonna pull the tube! Cross your fingers for us that it goes smoothly and stays out this time!

it kills me to see her cry, everything in my being wants to scoop her up and pop a boob in her mouth, LOL. But I understand why I can't.

one day at a time, and today is a big day. I love seeing her without all the tape on her face too, just a few more minutes!

[Jilian]

I'll keep you in my thoughts and say a prayer that this extubation is successfull!

[Lindsay1234]

Prensa - I was reading your blog and Julienne is AH-DORABLE!!!! And so tiny! You could barely find her in some of those pictures. She is jsut so beautiful and looks so great in the post op pics. Youre other 2 kids are dolls too!

[FaithfulOne]

Prensa: *fingers crossed* for you! You're lo's are super adorable..congratulations

[Jilian]

Originally Posted by Lindsay1234

Prensa - I was reading your blog and Julienne is AH-DORABLE!!!! And so tiny! You could barely find her in some of those pictures. She is jsut so beautiful and looks so great in the post op pics. Youre other 2 kids are dolls too!

OMG she is just the most beautiful baby girl ever. I just love the picture of her looking up at you and scrunching her forehead up. What a sweet baby girl. I hope yesterday went well. How are your other 2 children doing with everything that is going on? I remember DS1 was amazingly understanding when DS2 went in for surgery. He was his big protector when he came out.

[Prensa]

thanks you guys

other people's blogs have been the number one most helpful resource for me in preparing myself for this and for finding hope and also for good info in plain language. If my blog can help someone who is looking for help someday I want to make sure its out there.

so far so good, she's doing really well off the vent today and her sats are nice and high and they are dripping in some pedialyte to "prime" her for my colostrum, maybe tomorrow or the next day. All the nurses that have worked with her are popping in to say how good she looks, that makes me feel really good!

my kids are handling this all very well...they miss me but it helps that my mom is here and grandma attention is the best kind . Henry asks some very good questions about her, and I answer as honestly as I can, but he's just four and his attention span is not that long. So we transistion quickly from Julianne to his new favorite movie (nightmare before christmas! ) to him this is all normal though, you know how kids just accept things!

there was a case worker in here this morning, talking about all the stuff we may have to take home...what machines / equipment did your kiddos come home with? Do any of you have to give lasix? is that an injection?

[LauraLoo]

Originally Posted by Prensa

there was a case worker in here this morning, talking about all the stuff we may have to take home...what machines / equipment did your kiddos come home with? Do any of you have to give lasix? is that an injection?

Lasix helps keep fluid retention down - is used quite commonly to prevent congestive heart failure.
http://www.drugs.com/lasix.html
I know that ds took lasix before and after his OHS, but since it was so long ago (almost 8 years ago to the day!) I don't remember for how long after he took it. It was a liquid medicine that I gave him orally.

We didn't come home with any machines or equipment, either.

[Jilian]

We came home with lasix only and DS was on them for about a month or 6 weeks, his was liquid and we gave it to him with a little syringe minus the sharp tip. I have heard of many heart babies being on lasix for a year or so to keep fluid down. It depends on the type of defect and repair, etc. DS didn't need any machines but I know some heart babies who have come home on feeding tubes and a pulse ox.