Need some prayers and reassurance

daphne814 · March 2012

I got a call from the NICU this morning, which I knew was going to mean bad news because I usually call them for updates, they don't call me. Ryan had to be put back on the breathing tube because he had a desat spell he couldn't pull back up from. He also hasn't been peeing in the last 24 hours even though they've given him a few doses of lasix. They are worried that the PDA is still open and it's preventing blood from getting to his kidneys, so they are going to do an echocardiogram today to check it. If it is open, he may be a candidate for the ligation surgery to close it off. Has anyone else's preemie been through that surgery? He's still under 2 lbs, it seems to crazy that they could perform a surgery on a baby so tiny, but I know CHOC is one of the best NICUs in the area, and they bring in babies from other NICUs to get the surgery done here, so at least I know he is in good hands. I'm just so worried about it all. If you have any experience with this, I'd love to hear your story. TIA.

DrRx · March 2012

I'm so sorry to hear that Ryan has been having some problems and had to go back on the vent. I don't have any experience with PDA, but I do hope that they will be able to figure out what is wrong so that they can treat it. I'm glad that he is already at a great hospital for the surgery and you don't have to worry about having him transferred.

T&P for you and Ryan. Hang in there and keep us posted when you can.

sbphotos · March 2012

Big hugs! I don't have experience with that surgery, but sending Ryan (and you and your dh) TONS of t&p's. I know exactly how scared you are. My son has been fighting an infection the past 3 days that he got through his central line iv. They also had to stop his feeding. I've never in all my life been such a nervous wreck and I've hardly stopped crying from fear. This roller coaster sucks. I hope this situation resolves quickly (great that you're in such a good nicu should the surgery be needed)and smoothly and you get going uphill again very soon.

Denesdia · March 2012

DD had the PDA ligation and as far as surgery on micropreemies go, it is pretty routine. The results are immediate, and the procedure is very fast. No surgery is minor for the mama, as we all know. Take good care of you. Sending good karma!

KatFCo · March 2012

DD had the PDA done before she was even 26 weeks gestation. Like PP said, it's pretty routine, but it can be scary for the parents. They put in a tiny clip about half the size of a staple to close it and he'll have it the rest of his life. DD is almost 5 and she still has a slight scar from it.

All of these preemie issues are very scary, I know. It's hard when they take those steps backward, but try to remember to take things one day at a time. Once you get farther along, it also helps to look back at how far they've come (it's easy to lose perspective in the day-to-day sometimes).

ChickensFive · March 2012

Oh your poor liitle baby! :-( V had a PDA ligation and like pp said it is a routine surgery often done on preemies. I don't know how much V weighed when she had it but at birth she was 1lb 2ozs she had the surgery when she was about 6 weeks old (so about 33 weeks gestation ??) so she was probably not far from 2lbs. Again the surgery is routine but the recovery can be a bit rough. It was for us but at the time we were not aware that she also had pulmunary hypertension. Had the Drs known that they would have prepared for any issues that came up related to that. The Drs and nurses kept telling us that as soon as the recovery is over (typically 12-48hrs post surgery) the babies are completely different and they thrive so much better. For us, it was longer than 48hrs but they were right; as soon as she got better she was a different baby and went from a vent to a CPAP to nasal cannula in less than 24 hours. Good luck! If your Lo needs the surgery they will do great!

daphne814 · March 2012

Thank you guys for all the advice and support. We ended up getting another call from the NICU while we were on our way there, and they told us they found a large pocket of air/fluids in his abdomen which meant there was probably a perforation in his intestines. They had to take care of that and let him heal before they can deal with the PDA now. So, he had a procedure today where they inserted a tube into his abdomen to drain the air and fluids. They got 7ml out right away, and they are leaving the tube in for 2-3 days to see if anything else drains out. Then we have to see if the perforation will seal on it's own or if they will have to do another surgery to find it and close it up. He was still sedated when we had to leave, but his HR and and saturation levels were all good and stable, so hopefully he is pulling through this next hurdle.

My whole body feels like I've been hit by a truck, and I think it's just from crying so much and being so emotionally drained. I'm really trying to stay strong, and everyone keeps telling me to be sure to take care of myself, too. But man, I really don't know how to do that at this point. I can't really do anything differently. This NICU journey is just taking me for a ride and I feel like my body is going through the ringer. Is this pretty normal? Could it be just pain from the emergency c-section, or is it possible to have physical pain from the emotional stuff?

Mrs. Alice · March 2012

daphne814:
Thank you guys for all the advice and support. We ended up getting another call from the NICU while we were on our way there, and they told us they found a large pocket of air/fluids in his abdomen which meant there was probably a perforation in his intestines. They had to take care of that and let him heal before they can deal with the PDA now. So, he had a procedure today where they inserted a tube into his abdomen to drain the air and fluids. They got 7ml out right away, and they are leaving the tube in for 2-3 days to see if anything else drains out. Then we have to see if the perforation will seal on it's own or if they will have to do another surgery to find it and close it up. He was still sedated when we had to leave, but his HR and and saturation levels were all good and stable, so hopefully he is pulling through this next hurdle.

My whole body feels like I've been hit by a truck, and I think it's just from crying so much and being so emotionally drained. I'm really trying to stay strong, and everyone keeps telling me to be sure to take care of myself, too. But man, I really don't know how to do that at this point. I can't really do anything differently. This NICU journey is just taking me for a ride and I feel like my body is going through the ringer. Is this pretty normal? Could it be just pain from the emergency c-section, or is it possible to have physical pain from the emotional stuff?

I'm so sorry you both are having rough time : (

I don't have any personal experience with the ligation or perforation, but I am sending lots of prayers for your little man. Right now is likely one of the hardest most stressful things you will ever go through. It's definitely harder for your body to heal from surgery when you are emotionally stressed. You are right, there is nothing different you can do to change the situation. As a Mom, that is so hard to do! You will be so amazed how strong these tiny preemies can be. Ryan is definitely a fighter. Just keep cheering him on, loving him, and like people are telling you, don't neglect yourself right now either. Pumping and being involved in the hands on care helped me feel more involved. Take care and give us and update when you can.

GatorNurse · March 2012

I don't have much experience with either of these issues; DD had a PDA that closed with one dose of Indocin. But, I just wanted to give you my support & prayers tonight. I'm hoping that tomorrow is a better day for you & Baby Ryan. Make sure you're still taking your pain meds & resting. Don't forget you had major abdominal surgery. Hugs Mama!

HEmery · April 2012

We had to deal with both of these, PDA and perfs. My body constantly ached because I would stay stressed until it was time for bed or when first waking up. Hubs neck was always hurting him.

Hugs. Hang in there.

spain116 · April 2012

Adding my well wishes to the group. Hang in there! Best to you, Ryan and your family.

kelkel09 · April 2012

I am so sorry you are dealing with all of this. My DS had a PDA ligation at just 2 weeks old. I was scared out of my mind at the thought of putting a 2 lb baby under anesthesia, but everyone kept reassuring me that it was a very routing procedure. The procedure itself is really quick.

T&P's to Ryan and your family!

AlwaysSunny925 · April 2012

I'm sorry to hear this. Aiden had this surgery right around 2 or 3 lbs as well. It's a simple bedside procedure. Takes about an hour. It is pretty common. Fingers crossed that he doesn't need it though!

BruinMommy · April 2012

I've been an infrequent lurker here, but decided to post so I could hopefully give you some reassurance.

My twin girls were born at 25 weeks 5 days and both had the PDA surgery at CHOC. For us, it really was an uncomplicated procedure and went smoothly for both girls. They ended up staying at CHOC for 4 months and truly had the best of care. Your little one is in such good hands! I assume he's in the small baby unit like my girls were--those nurses took such amazing care of my babies (and of me, too, to be honest). The doctors, as well as the rest of the staff, were top-notch.

That was almost a year and a half ago and my girls are thriving. They still have weekly therapy appointments, but have come a long way. I hope this helps and gives you some sense of reassurance. If you'd like, I'd be happy to discuss our experience at CHOC with you. Sending good thoughts your way!

Lorange-8 · April 2012

Hi, Zoe had the PDA ligation at CHOC. She was born at 23 weeks at 1lbs 7 oz and had it done a month after she was born at less then two pounds. They did the procedure in her room, she was in one of the back private rooms. It took less then an hours and she was pretty out of it for a day or so. I'm know this is pretty late but I know a few of the nurse at CHOC pretty good and they are all so wonderful and will make sure your LO is taken care of.

daphne814 · April 2012

BruinMommy:
I've been an infrequent lurker here, but decided to post so I could hopefully give you some reassurance.
My twin girls were born at 25 weeks 5 days and both had the PDA surgery at CHOC. For us, it really was an uncomplicated procedure and went smoothly for both girls. They ended up staying at CHOC for 4 months and truly had the best of care. Your little one is in such good hands! I assume he's in the small baby unit like my girls were--those nurses took such amazing care of my babies (and of me, too, to be honest). The doctors, as well as the rest of the staff, were top-notch.
That was almost a year and a half ago and my girls are thriving. They still have weekly therapy appointments, but have come a long way. I hope this helps and gives you some sense of reassurance. If you'd like, I'd be happy to discuss our experience at CHOC with you. Sending good thoughts your way!

Thank you so much for posting this, it really does help. We are in the small babies unit at CHOC, and everyone there has been so wonderful. I truly know he is in good hands, I just let the stress and worry get to me. It will be so nice when he gets a little bigger and healthier and we get out of the woods for all this scary stuff. Today is his 2 week birthday and he's really hanging in there, we are so proud of him, and so thankful for the nurses and doctors who are caring for him. I'm so glad to hear that your girls are doing so well, and thank you again for sharing your story.

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