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Need some advice

Well my SO and I are having a baby girl and she has been diagnosed with HLHS. We have been told she will have her first surgery within her first 2 weeks. Then she will stay in NICU till she recovers.

I just had some questions..

1. Were you able to breast feed your baby before or after heart surgery?

2. Were you able to do the first diaper change?

3. How often are you allowed to visit the baby?

4. Do you still get to share a room with your child?

This is for any parent with a child that had a surgery. I'm a FTM so I'm not sure what to expect. Thanks in advance.

Re: Need some advice

  • My DS1 was in the NICU for 2 weeks but he did not have surgery so I can't answer that part of the question.

    As for the NICU questions I can answer about my experience.

    In our hospital there was NO rooming in with your child.  The NICU was divided into four room and each room was divided into a front and back half.  Each half had four babies and there were 2 chairs at each station for parents/visitors.

    We had to call before we could enter and we had to leave at shift change.

    There was no sleeping in the NICU.

    However, we could visit our baby anytime of day (outside of shift change).  I used to go from 7AM-7PM.  And if you wake in the middle of the night or you're up pumping you can call and talk to their nurse.

    Our friends in the NICU son had surgery.  they were not allowed to breastfeed prior to it, he had a lung issue and they were only tube feeding him.  So she was pumping.  They were allowed to see him shortly after surgery in recovery and they walked through the hospital with him.  

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  • MrsRKJMrsRKJ member

    Well, I have been in both situations - having a baby in the NICU, and having a baby who had surgery, and recovered in the PICU

    Our NICU allowed you to breastfeed your baby (provided that there were no other issues that would affect this).  You could stay 24/7 if you liked (there were pumping rooms with a pull-out couch that you could reserve to stay overnight) - however you could not have the baby in there with you

    I did not get to do the first diaper change, but they encouraged us to do the diaper changes, feedings, taking temp, etc when we were there visiting.  We even got to give him baths.  And since my LO was on a breathing tube we didn't get to hold him for 16 days :( 

    When my son had his surgery, he was in the PICU which had armchairs that pulled out into a "cot".  You could sleep right in his area with him (but the areas were divided by a curtain, so little privacy).  You could breastfeed, again, as long as there were no reasons that LO couldn't.

    If for some reason you can't BF right away, just pump.  Your LO will still be getting your BM, and when she is ready, you can try the BF.


     Good luck to you and your LO :) 

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  • Talk with your doc about visiting the NICU that your child will be in. Every NiCU is different and will have different rules.

    Our DS had a different surgery when he was less than 2 days old. For a few days, we weren't able to hold him because he was intubated.

    We were encouraged to be there as often as possible and to do feeds, changes, everything that you normally would. The hospital we were in didn't have a place for local people to stay but have since opened a new facility where each baby has it's own room with a place for mom and dad.

    A tour will really be the only way to answer your questions.

    Good luck!
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  • I don't know the answers to your questions but I do have a friend whose son is about to go through another surgery for HLHS. I told her about your questions and she told me to PM you her email if you want to ask questions. She also said to go to www.sisters-by-heart.org and sign up for a care package. She also has a blog if you want to follow it, I will PM that as well.
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  • I am an OB nurse and also work in NICU.  Can't speak for your hospital but in ours you are allowed to visit your baby anytime except change of shifts. We encourage pt's to do all the baby care that is safe for the baby.  Depending on what is happening with your baby, you may or may not be able to breastfeed, you may have to pump.  Breastfeeding babies with heart conditions can dop their oxygen saturations during feedings so alot of times we have to place a feeding tube that goes thru the nose into the stomach so not to stress the baby out. As far as rooming in, we have an area where babies who are close to going home are placed and there is rooming in allowed.  However, your baby would be in a more intensive care area so you would not be allowed to sleep at the baby's bedside.  Contact your hospital and request a tour, which is a normal thing.  They can answer your questions specific to their facility at that time. Good luck.
  • My DD has spina bifida, so she needed surgery immediately after she was born.  Right after I delivered (by c-section), she was whisked away to the NICU while I stayed to get sewn up.  We were in 2 separate hospitals, about 4 blocks apart and connected through a tunnel, so I was apart from her for 3 days before getting discharged.  It was a long 3 days, but then I was able to stay at the hospital for the remainder of the 7 days that she was admitted.  We left the NICU and then came back for a 2nd surgery she needed when she was 3 weeks old.  We were in the hospital 2 nights that time.  

     1. Were you able to breast feed your baby before or after heart surgery?  I could not bf until after her surgery.  I was so fortunate that I had wonderful nurses who helped get me set up with pumping in my room.  I was able to visit DD's room and they also had pumps in each room, so I could pump every 3 hours.  As soon as she was cleared after surgery, I was able to bf.  I just had to be really careful of the big scar on her back. 

    2. Were you able to do the first diaper change? No, but that was ok with me, lol!  I had a c-section so I was in a lot of pain myself, and the first day or 2 I let the nurses do a lot of her care.  As I got better and was able to stand on my own, I started doing more and more of her care.  By the end, we hardly ever had the nurses in her room and DH and I were doing pretty much everything for her.  But, I tell you what, having the help in the beginning was so amazing.

    3. How often are you allowed to visit the baby?  I was able to be with her as often as I wanted.  In our NICU the parents aren't considered visitors and can be in the babies' room anytime.  I spent as much time as I could in her room.

    4. Do you still get to share a room with your child? Yes, there was a pull-out bed in the room, but I actually stayed at the ronald mcdonald house, which was inside the hospital and on the same floor as the NICU.  The nurse called me at night when she woke up to eat, and had her diaper already changed when I got there.  I just had to nurse and put her back in her crib.  We've had a couple other surgeries and I have roomed-in with her a few times, but it is very uncomfortable that I didn't get much sleep. 

    After the pregnancy, the time in the NICU was the worst time for me.  I just wanted her home and for us to have a normal life.  I will say that the NICU instilled some good nighttime habits for her.  It's very dark and quiet at night and light, bright and loud during the day.  DD also was really good about sleeping in her crib when we got home.  Since I had a c-section, I had lots of help to take care of her while I was also recovering.  And when we left, I felt much more prepared to take care of her than if I would have left the hospital with her 2 days later.  Good luck to you and your LO!

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