Anyone Else Had a Preme with Chylothorax?

I know that this post is old, but maybe someone can shed some light on me with my present situation. My baby boy was born at 37 weeks and 2 days via c-section because he has a chylothorax on both sides of his lungs. He has been in the ICU for a week and 2 days now and the doctors say he is getting better, but everytime I go and see him he looks weak. As of 3 days ago they took out the tube that was being used to help his lungs ventilate, so he is now breathing on his own. He is still draining a lot from both sides, but they have now begun to put a special fluid in his blood that supposably will eventually stop up the leak in his lymphatic system. Today when they called me from the ICU they told me he needed a blood transfusion because he was now anemic. I am falling apart by the minute and I feel helpless in the hands of so many doctors. I have 2 other children to attend to but am finding it harder and harder to live my life normally. I just want this nightmare to end. They tell me it could be 2 to 3 weeks more and they all seem to be very positive about his recovery. I need to hold him and bring him home....I am going crazy.

I am responding 3 years after your post as I am frantically searching for answers on this regarding my grandson. Any chance you are still here and can provide an update of your situation?
I am editing 3 weeks after my original response. I just wanted to let anyone else facing this to know that there is hope. My grandson was so, so ill. We feared for his life. I know that each case is different but my grandson is getting better. Still in NICU 4 1/2 weeks after being born. Still some issues but so very much better.

T.,
I am sorry I don't have personal experience with Chylothorax. My triplets were born at 26 weeks gestation and spent almost three months in the NICU. I too struggled with wondering whether I was spending enough time with them. It is different for each person. Our little ones had what they refer to as the "honeymoon period" for the first week where they did wonderful. Then they were on the up and down roller coaster giving us the ride we never expected. All three got really sick. The doctor's basically camped out at our room and suggested we spend the night at one point. My husband and I stuck it out together and said lots of prayers. We made sure that we stayed strong when we were around our little ones because they needed to feel that from us. Today they are growing and healthy almost seven month old infants. We still have our battles as we are trying to wean off oxygen and are still on apnea monitors, but the road we have been on is so worth traveling to have those little ones look up and smile at us now. I am thinking about and praying for you and your family. You do what you feel is right in your heart and it will be the right decision no matter what anyone else thinks.

I had a baby 12-6-05 and he ended up in the NICU less than 24 hours after birth (c-section). He ended up with Bilateral pneumothorax (not sure on the spelling) .. in other words he had 2 collapsed lungs. HE was on a ventilater and had chest tubes on both sides. Message me if you have any questions about our experience....I"m happy to say that our son is just fine now, although he has had pneumonia a few times, i guess its easier for his lungs to develope that stuff now.

I don't have experiance with chylothrax sorry.

But I did have a 32 weeker too. My daughter was at Children's in Mpls.

I just wanted to give you some encouraging words.

My daughter is now a healthy 6 year old and doing just fine. She had some medical hurdles when she was born and even after and it was rough. But by 6mos.old you'd never have guessed she was a preemie.

Hang in there!

I did not have a premie with Chylothorax, but I did just have a son (full term) who suffered from severe meconium aspiration. He was in the NICU about 3 weeks, and on a vent for the first week.

You ask if you should be spending more time at the hospital - I asked myself that often as well as we have a 14 year old at home. Spend whatever time YOU feel is necessary to balance your need to see your son in the hospital and your other children's need to be with you. Don't feel bad about going home at night, or only seeing him a few hours. If he's on a vent he's probably sedated somewhat, and your presence is definitely comforting, but he's likely not that aware of it at this point.

Remember too that your presence isn't likely to change the outcome. He's in good hands, hands that care about him and want him to recover and that they are doing everything they can to help him. They *want* him to be well and go home, and from what I experienced they do everything in their power to make that happen.

Be at the hospital when you want to be, and don't feel guilty when you aren't. I'm sure the staff there is as good about calling you if you're needed - or when good things happen - as they were at Aurora Baycare's NICU. You have 2 other children to care for and they need your presence and reassurance as well.

Our thoughts and prayers are with you and your family and especially your little boy.

L.

Hi T.,
I just wanted to let you know that I feel for you. My first born spent two weeks at Children's after he was born and had to go back for three more surgeries the first year of his life. Don't feel guilty about how much time you spend at the hospital. You have other children that need you too! And your little one is in good hands. They will take good care of him! I hope everything turns out foe the best! Good luck.

I don't know anything about Chylothorax, but I do know what it is like to have a preemie. My first child was born at 30 weeks. I know that it is really stressful and quite an emotional rollercoaster.

My suggestion is that you lean on friends and family to help out at home and with your older two, and spend as much time as possible every day at the NICU, holding and being with your son.

My child was born early because I was sick with PIH, and while he was pretty healthy for a preemie, I was really weak and stressed. Spending the day at his side, holding him skin-to-skin and helping the nurses care for him was really healing for me, and I think very good for him. He grew quickly and the nurses said it was all the time I spent holding him.

If there is any way you can spend more time at the NICU, it would be good for you both.

Best wishes and prayers to you at this difficult time! I'm sure your baby will be fine.

I haven't had a baby with Chylothorax, but I have had two babies in the NICU and can understand some of what you're going thru. I just wanted to say that I'll pray for you and your precious little one and also your children at home. It's hard when you have other children at home and want to spend time with them but also spend time with your little one in the hospital. One thing I did was to visit the baby after the other ones were in bed that way I didn't feel like I was missing anything with them. Have you been able to let your older children visit the new baby? You may have to 'schedule' the visit with the nurses, but that would also help them know where you're going. Another thing that was comforting to me when I couldn't be at the hospital, was knowing that my little one was in the best care they could get(both my preemies were at Children's in Omaha).

Congrats on your newest one! Take lots of pictures!