PAM FOD #11 - Preemie complications: PDA

Prematurity Awareness Month
Fact of the Day
Day 11

Q: A preemie I know needs heart surgery for a heart murmur. Is that common?
A: It depends on what is going on, but if it is for a PDA it is actually not that uncommon.

A PDA, or patent ductus arteriosus is an open ductus near the heart that should have closed prior to or just after birth. It doesn't close in many preemies, and that impacts the flow of blood to their lungs and decreases the efficiency of their circulatory system.

Here's an official website about it.

Here's how I understand it.  It's actually a genius little device, that PDA. In-utero it causes less blood to go to the lungs, as blood to the lungs isn't needed in the womb, and makes the whole system more efficient. Post-birth if it doesn't close on its own, pressure changes cause it to send MORE blood to the lungs, and things don't work as well as they should.

The doctors will try first to close the PDA with medicine. If that doesn't work, they'll discuss what steps to take next. They may let the baby grow until it is clear that the PDA is either causing problems or won't close on its own later. Or they may try to fix it earlier. It's a difficult choice for doctors, and we are glad they take this on a case-by-case basis.  Our team of neonatologists was split. Some liked the idea of getting it taken care of on JAM, others had a wait-and-see approach. Surgery on babies, even relatively routine surgery like a PDA, is risky. Finally, for our son, the situation "presented itself" and it was clear that he needed better blood flow.

You can read our PDA story as it unfolds here, here, here and here.

Day 36 & 37: PDA ligation (closed heart surgery) and a new nurse.

Written August 22, 2012 10:57am

J on the day of his PDA (heart) surgery

J's surgery is over and went well.  The next two days will be rough for him, so prayers for his bounce-back post-surgery are appreciated.

We were grateful to be able to share the morning with a family whose child underwent the same surgery just an hour or so before J (with the same doctor). Sharing this sad/scary/hopeful/breath-taking/tummy-knotting morning with this family was very meaningful.  We were able to talk together, pray together, and was grateful to know that I was not the only one responding the way I did to all that my little one was experiencing. 

I'll be staying in the hospital for the afternoon to get regular updates on J's care (he won't know I'm here, but I can't go home with so much going on with him).  Steve will be doing work from home as Kimia naps.

Thank you for all your prayers.

Written August 23, 2012 7:45am

J had a rough night last night. At 10 they gave him a chest tube for a collapsed lung. After that he wasn't doing well and the tube wasn't releasing air the way it was supposed to, so they took out the tube and were able to get him stable again, but they had to fight through the evening to get him there.

They are analyzing a new set of xrays right now to look at that left lung. We were warned that this might happen post surgery but were hoping it would not happen.

This morning neither Steve nor I can get in to see him, and it hurts this heart sooooo much. The nurse from yesterday is watching him again today, and yesterday was her first day working with him. I have a difficult time communicating with her. All this makes this distance from J even harder to swallow.

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(Aug 22, 2013) The care page post above got people praying. Lots of people praying again. Lots of people who steadied themselves for the next update as it came, nervous about what it might contain.

I was trying to figure out why we couldn't see him the morning of a year ago, right after surgery and all that. How hard. How could he not be there? How could I not be there? Then I remembered. Steve was at the fall conference for work. The same conference that we both attended this morning. J even crashed the outdoor staff lunch today afterward. Both our girls are in school, so Steve brought him along in a stroller.  No one seemed to mind. Oh, the difference a year can make.

A year ago I was still on medical leave for another week, and while Ella was in school, Mimi needed me at home to watch her. There was no way she could go into the hospital with me when Jonathan was so sick. Steve was able to see J as soon as his work obligations were over, so it wasn't like he went all day without being there. Just the morning. But being stuck at home and feeling helpless was hard.  It was worse because Jonathan had been paired with a nurse that I not only didn't understand, but that intimidated me.

The nurse had spoken harshly with me the night before - just a few hours after J's surgery. I'd walked into Jonathan's area with another NICU mom who was my friend. The nurse thought I was bringing in an outside visitor and outside visitors were strictly prohibited during shift changes. We'd both been in the NICU all day and had just been in a break room eating dinner.  We'd lost track of time. Concern for my son was more important to me than the time of the day. I wasn't even aware that it WAS shift change time. Her sharp bark "you're not allowed in here now" made me scared. Was something wrong with my son?  Had things turned for the worse? I wanted to ask more questions, but with my friend at hand, I mumbled something about how maybe we ought to go to the hallway and we sharply retreated.  For the next three minutes we stood in the hallway and I worried for Jonathan. Then I caught sight of a nearby clock and realized what we had done and what the nurse had thought. 

And now that same nurse was paired with Jonathan for a second day.  I wasn't sure she knew Jonathan well enough to read him well, and I felt so intimidated by her that I didn't feel I could question her or ask any real questions about him over the phone. She'd get impatient with me or think me stupid or overreactive. I was sure of it. I could see it all in the sharp look she'd given me the night before. That was hard.  Why did she have to watch him on this, his sickest of days?

I figured out later she'd been paired with him because she had more experience, because she was better at working with the sickest of kids. But no one explained that to me at the time, so all I knew was that the nurses who most cared for him, the ones I was most comfortable with, they were no longer working with him.  And he was declining. I was enough scared of the nurse that even though Steve offered to watch Mimi so I could go in for a time, I sent Steve in to be with Jonathan instead. Steve didn't mind the nurse. And I didn't mind watching Mimi so much once I knew that Steve was in the hospital, that ONE of us was with the little guy.

This is what he wrote that afternoon:

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Written August 23, 2012 2:42pm by Steve

Here are some things I heard people say in Jonathan's room today, with some translation.  They should give you some idea of how he is doing.

"With so many different treatment changes, it is hard to nail down cause and effect."  Translation: something is working, it might be the new gas we have him breathing, it might be the medicine, it might be the tube that is no longer in his chest, we are not sure what it was, but we are not arguing.

"That is a fantastic gas."  Translation: good breathing Jonathan!

"That is definitely a weanable gas." Translation: they got to turn one of the knobs on the noisy machine so that it is giving Jonathan less pressure - movement in the right direction.

"He is still pretty touchy."  Translation: if you touch him, he won't breathe very well.  Don't touch him much.  He is probably still pretty uncomfortable from the surgery.

"Have you gotten a chance to scrub in yet?"  Translation: Dad forgot to take of his wedding band, and the nurse didn't like it.

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P.S. The difficult nurse?  It took another two to three months, as we didn't have her very often, but she grew on me.  By the end I understood her to be sternly efficient and it was those strengths -- the need to abide by rules and have the child's safety as her primary concern -- those were the things that made her a good nurse.  She was one of a very few who were there when we visited on Jonathan's first birthday, and while she still had a bit of a crusty exterior, she was pleasant and warm underneath it all. She came out and chatted with us, and even gave Jonathan a bit of a smile.  He was cranky and didn't smile back. Not because he's a cranky kid, but because he was having a bit of a hard day. I guess we all have hard days, don't we?

Day 35: Preparing for heart surgery. (Plus pictures from one year later)

A YEAR AGO:

Written August 21, 2012 1:22pm

Jonathan's heart surgery is scheduled for tomorrow morning at 9:30 am. The doctors decided after much discussion this morning that the benefits to the surgery to close the PDA outweigh the risks.

Part of the reason for lung decline over the past few days (in addition to intubation) could be due to the extra fluids he's been given to improve kidney function. The doctor said that typically they like to keep these intubated preemies a little on the "dry" side in hopes that it will help keep their lungs dry.  That didn't work for him as he needed MORE fluid to get his kidneys functioning properly.  Thus, it is not entirely surprising that with improved kidney function he also has extra fluid in his lungs.  They do not suspect pneumonia as the area that is congested moves from one chest scan to the next.

Because of his lower lung function (and in anticipation of even lower lung function as he recovers from surgery), Jonathan is being moved from the conventional vent to the oscillating vent.  In terms of ventilation this is considered a step backwards.  That said, it seems to be what he needs most now.  This new vent will give him quicker breaths of air.  Since he is currently on the highest pressure setting for the conventional vent and even so his blood gasses are not improving, it is clear that extra help from the more invasive vent is necessary.  We hope that with the oscillating vent he will be able to maintain good blood gasses without the same high pressure.

Since he is on the highest pressure possible from the conventional vent, he has no place to go if his breathing starts to decline in or after the operation.  Since initially post-surgery things are harder on the infant, and cardiovascular function gets a bit worse before it gets better, we have every reason to believe that he WILL need more help breathing in the next 48 hours.  Thus, it is good to get him on the vent now.  We hope he responds well to it and that he's in good shape for surgery tomorrow.

We were hoping he'd hit 1 kilo last night, but he still sits at a weight of 975 grams (or 2 lbs, 2 oz).  Perhaps we'll have a 1 kilo baby by tonight?

On a lighter note, he was introduced to a pacifier on Sunday and he LOVES it.  I have NO idea how he manages to get that thing in his mouth, what with the feeding and breathing tube already in his mouth, but he finds a way. Yes, it's a standard sized pacifier.  It's the kind that easily comes OUT of the mouth (the green kind you see in the hospital often) but that just gives me an excuse to help him hold it in.  Since holding him won't be an option for a while (until he's off the oscillating vent), I'm grateful for this one small thing I can do to help calm him.

Thanks for your thoughts and prayers, thank you for walking with us in this, for mourning with our mourning and rejoicing with our rejoicing. The ups have so far outnumbered the downs, and we feel blessed.

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TODAY (2013)

At physical therapy J was not interested in practicing his sitting. We think his belly was hurting him. Every time we'd try to sit him down, he'd refuse to bend at the hips. We thus spent a lot of time working on bringing hands to mid-line, rolling, and grabbing feet. Then, since our focus at PT is getting him to be mobile, we made a bit of lemonade out of his stubborn lemons. and J got to WALK. BY HIMSELF!  Okay, so with a fancy walker that was set to the absolutely shortest setting (because how many four month old sized babies walk?) The walker barely fit him, he seemed to think that the handle bars were his goal, and kept staring at them and taking steps to bring himself closer to the bars (which were about 1/2 a centimeter too far away for him to reach) but then when he figured out what he was doing, he had a blast. Since (while physically small) he's cognitively somewhere around a year, THIS is just the sort of thing he's been dying to do.

ZOOOM!  Ready for take off!