heart surgery and BF questions (x-posted in special needs)

[shanniesue2]

Okay, so I'm curious... for those of you with "heart kids," if you were breastfeeding after the surgery, can you talk to me about how that worked. I mean like immediately after the surgery. We haven't had a chance to meet the surgeons, yet (that appt is next week)... so I'm going on a lot of assumptions here. But I'm assuming he will be hooked up on all sorts of stuff for a few days? He's 17 months old, and accustomed to co-sleeping and nursing on demand. When we were in the hospital for the heart cath (he had to stay over because of a fever post-op), I had to fight the charge nurse to get them to let us have a bed instead of a crib... and we couldn't have both due to fire codes. Anyway, I have a copy of the hospital policy on cribs for children under 2 and it calls for a crib, but allows for individualization. I don't know if policy will be stricter in PICU.

Anyway, I'm also wondering about holding him for nursing purposes. I assume this would be pretty painful for him... but the nursing in and of itself could be a good comfort. Or should I just plan on pumping and giving him expressed milk. Except that I don't think it's just about the milk for him... the act of nursing is a big part of it.

I don't know exactly what I'm asking for, I guess... it would just be nice to hear about other people's experiences with this.

Thanks

[Lindsay1234]

What kind of surgery? Dd2 had open heart surgery to place a shunt and looked like this afterward (its kinda graphic).
http://i40.photobucket.com/albums/e2...ywalsh/328.jpg

There is NO WAY we could hold her. She was heavily sedated for 4 days and only received pumped BM through a tube on the 4th day.

If he is having open heart surgery, I wouldnt plan on nursing immediately. Remember, his chest is going to be very sore for a while (if OHS). Maybe you can lean over him if hes awake and needs it?
GOOD LUCK!!!!!!!

[deezee02]

ITA with PP. DS has had 3 open hearts already...and the soonest we were able to hold him was 2 days post-op.

They are MUCH different that a cath. For a cath, we were able to hold him right away, after an open heart many times their chest is left open and there are many tubes and wires coming off them--some typically running stright into their heart

A crib may be neccessary for safty reasons--there are many lines and tubes coming from them and if they try to remove them (and the older they are the more they try) they can hurt themselves.

They will also introduce feeds slowly, they cannot eat for a bit until after they are off the vent, and then typically they start with a feeding tube to make sure their gut is working alright.

[Bensmommy]

I'm not a mom with a heart kid- bless you women!!!- but I am a nurse that has worked NICU/CVPICU, so please allow me to chime in, if you will. I agree with all about the no feeds, open chest, sedation, lines, etc. If you speak with your surgeon and the staff in the unit, they will (should) be sensitive to your desires and help accomodate you as soon as is practical and safe for both of you. It is SOOOOOOOOO vital that you pump and store your milk for your dear one during this time- not just to keep up your supply, but also for his speedy healing and recovery. Nursing (the act) is very comforting for the babe, but can't happen right away- not just for the reasons above, but also because it can be "stressful" in the beginning (pain, movement, suck/swallow/breath which greatly uses heart capacity and reserves). Those wonderful antibodies, and the perfect balance of fats, nutrients, etc in the most perfect and assimilatable (is that a word?) form. Oh- my encouragement to you and your baby! Keep up the good work, Momma! Be sure to make your needs and desires to nurse and furnish your dear boy with your milk up front, so there is no question!

[Earth Momma]

yes to all of the above - things really depend upon what type of procedure is being done.
happy to share more when I know more - good luck!

[vbactivist]

Just wamnted to chime in here (i did over in sn's) but once my daughter could take food by mouth, she was able to breastfeed. I think that might be what the op is getting at? I didn't have to use bottles, if that is what you are asking. But yes, they are not able to eat for a while - and it is a slow start because they are sleepy form all the medication - but I did nurse my daughter 24 hours post op (the second operation) and held her carefully. She didn't eat much the first couple of times, and honestly we did leave her laying in the bed mostly. We rubbed her hand or her head though to comfort her. you will be able to tell when they want to be held, and by that time, you proabbly will be able to. And I also leaned over the bed and nursed as well a couple of times. Good luck!

[hollytheteacher]

Have to be very brief because I have to get back to work, but I can come on later to share more info

DS open heart surgery at 3 months

Had to stop nursing six hours before the surgery, was able to nurse him for the first time exactly 50 hours later...they kept him VERY sedated with breathing tube and everything so he wouldn't be in so much pain, however immediately after removing the breathing tube he wanted to nurse, so i held him on a pillow with all his wires and tubes everywhere...I will post a picture later as well if that helps.

[shanniesue2]

Thank you! thank you! thank you! ladies

It's so helpful to hear about other people's experiences with this. This whole situation has kind of blind sided us, and I'm feeling kind of overwhelmed about it. We never knew DS has a defect until about a month ago... and he's such an energetic, happy, healthy looking (except for his small size) kid... it just really took us by surprise and I've been trying to assimilate information as questions come to me...

But anyway, yes... it will be OHS. He has an sinous venosus atrial septal defect... and 50% of the wall between his two atria is missing.

Will definitely plan to pump. And thank you for the link to that picture. It kind of scares me to see it... but I think it will help keep me from being shocked after his surgery. And the the pp who had pics of breastfeeding with all the tubes, that would be a really helpful pic... you can PM it to me if you don't want to post it on the open forum.

We have a consult with his surgeons next week and will schedule the surgery at that appt. I'm expecting it to be in 2-3 weeks... kind of scary to think about it in concrete terms like that

[hollytheteacher]

Here is a little video (picture slideshow) of my Ds's surgery/recovery

http://www.youtube.com/watch?v=0bUG_2ZY9pc

I made i when he was like five months old...Now he is about to turn 2 and AMAZINGLY healthy and active and no one would ever know about his heart defect if i didnt' share the info with them.

[hollytheteacher]

Hey also, where is he having the surgery? Boston Children's is AMAZING. I highly recommend if you are anywhere near new england.

[daisymommy]

Baby having a heart cath & nursing afterwards?

Hugs mama My DS is having a heart cath. done in 2 weeks (he will be 1 month old) and I'm a basket case over it. I know it could be more serious, still, it's scary. I'm wondering the same questions you are. Mind if I join in and ask from any moms of heart cath. babies how soon you could nurse afterwards, adn how that worked?

Take Care,