Surviving your child's long hospital stay - Part 1: admit you're worn

I recently read where someone asked how others survived being long-term NICU parents. Five months in the NICU, or any hospital, is too long. We got out sooner than we'd expected, but it was a difficult road.

I remember I was too emotionally exhausted to cry. The bones of my soul were brittle and all my nerves had been exposed so long that they were now raw, not emotionless, but too burned to feel any sensation. And I wasn't the one hooked up to the monitor.

A friend posted this song (below) on my facebook page two months in. I didn't really listen to it for long then, because I didn't want to hear anything that hurt, I wanted the raw nerves to remain numbed. But when I did listen to it, it hit home -- harder than I thought it would.

I know the writer sings of depression, anxiety, and unseen areas of being worn -- but that's not what I heard when I finally clicked the link. Every line seemed to apply either to me or to my son, and often both. I often sang the words metaphorically or spiritually for myself, and sang parallel words for our son. The difference was, when I thought of our son, the words were applied a eerily literal way. His physical body was torn. We were worn.  And somehow admitting it helped.  Here are the words, and here is what my mind saw as I heard them.
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Keep on breathing, heart heavy
takes too much work. Intubate me.

Worn
(Tenth Avenue North)

I'm tired
I'm worn
My heart is heavy
From the work it takes to keep on breathing

Just before heart surgery. For him the
"frail torn" heart was a literal thing.

I've made mistakes
I've let my hope fail
My soul feels crushed
By the weight of this world
And I know that you can give me rest
So I cry out with all that I have left

(Chorus) Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn

Getting blood just before his second surgery.
"All that's dead inside" for J was his gut. He need it to live, but
it had died off (NEC). Chances of survival slipped to slimmer.
"I know I need to lift my eyes up" but his eyes were swollen shut
from over a pound of water weight (edema) on a two pound frame.
At this point it seemed that life would just not give up.
And it occurred to me that rest might not come in life.
He seemed to have "lost his will to fight"
I told him it would get better, that life could be better than this.
I begged him to hold on. All those around me prayed, because I was
too tired to pray anything beyond a moan.

I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn
Cause I'm worn

I know I need
To lift my eyes up
But I'm too weak
Life just won't let up
And I know that You can give me rest
So I cry out with all that I have left

(chorus)

Come and flood my eyes
With the most aggressive form
of ROP, we weren't sure he'd see.
But at this point, we finally had hope -
because it looked like he'd healed enough
and he might just live.

And my prayers are wearing thin
I'm worn even before the day begins
I'm worn
I've lost my will to fight
I'm worn
so heaven come and flood my eyes



Let me see redemption win
Let me know the struggle ends
That you can mend a heart that's frail and torn



I want to know a song can rise
From the ashes of a broken life
And all that's dead inside can be reborn.
Yes all that's dead inside will be reborn
Though I'm worn
Yeah I'm worn

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.

---------------------------------------------

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!

Day 27 - Hearts and Kidneys

A year ago I was so worn.
I'd stopped updating people on Jonathan's daily progress.  It was too hard. Too hard to write, too much to process. I was so tired.  We all were.

A friend (Thanks, T-dawg!) had sent us a pair of monogrammed backpacks, one for each of the girls.  I was so grateful, as Ella was starting kindergarten and I had not had time to buy her much of anything. My mom had driven me and Ella out to the store (remember, I still couldn't drive at this point) so that we could buy her a first day of school outfit. Mom had asked over and over if it was really all that necessary for me to be there, saying she'd be happy to do the shopping with Ella herself. I had put my foot down, though. I may not be able to walk well, but I WOULD do something right by my girls. I hadn't been much of a mother, and I think I thought that this trip to buy a first day of school dress might make up for it.

A year ago yesterday I broke the few-day silence and wrote this on JAM's care page. It was the beginning of what would be a very bad month, though I didn't know it at the time.

Written August 12, 2012 2:57pm

I'm breaking my promise not to write for a while. Our at-home family has had a good weekend, I'm feeling almost normal, and tomorrow (in addition to it being E's first day of kindergarten), big decisions will be made for Jonathan.  Since this is the easiest way to tell family & friends about Jonathan's care, and since I'm feeling alright, I write.

1. Jonathan's PDA (patent ductus arteriosus) has not closed and seems to have opened more.  If you don't know what that means and want to understand, see a short & sweet explanation here.  (This is his heart vessel thingy.)  The doctors have to make a decision on whether or not to do surgery to clamp the vessel.  They are (at least as of last week) split on this decision.  On the one hand, this could help prevent or make better lots of ills (including issues with his lungs and heart)  On the other hand, it's surgery on a wee little guy, and if closing this PDA isn't going to do much good (if it's a small leak closing it might not help too much) -- if it isn't going to help things significantly -- it should be avoided until a later date.   They are doing several more scans today, and will be reviewing them tomorrow to determine the best course of action.

2. Jonathan's kidneys aren't working so great any more.  He's had lower urine output since getting put on the starter TPN, and they are trying to figure out why.  This may be related to the PDA, may be just because of severe prematurity.  In essence it means that he isn't doing so hot on just my milk after all.  They're increasing the amount of starter TPN that he is receiving in hopes that this will help.  And they are doing scans on his kidneys.

3. Jonathan's blood sugars are not what they should be. There's too much fluctuation.  They are preventing this by slowing his feedings from taking 15 minutes to eat to two hours to eat.  This seems to be helping.

4. Jonathan is still having vent issues. His cuddle time with Steve today (first time) was cut short because after a half hour it was clear that they could not find a sweet spot for his vent and his leak was out of control.

Overall we are amazed at what these doctors can do and how early they can catch things.  It is fascinating to watch (okay, a little scary too, we wish things would always improve -- but it's good to see how well they are caring for him).

Thanks for your prayers,

.

It is so strange to read all that, and then look at pictures from a year ago today.  We were, indeed, living split-lives. While our son was critically ill in the neonatal ICU, we took these pictures of our daughter:

FIRSTDAYOFSCHOOL FIRSTDAYOFSCHOOL!

E next to the apple tree we named after J

Mimi watching from a tree.
Some day I'll get to go to school, too!

Day 20 - A matter of heart.

A year ago we'd discovered that Jonathan's PDA, which had initially responded well to the drug therapy but not entirely closed, had now reopened.

The doctors were split about what to do. About half the team suggested letting him grow bigger and then assessing the need to repair. Bigger babies have an easier time with surgeries. The other half worried that not repairing it would compromise his blood flow and make it harder to sustain his life.

We were glad for a team approach to medicine. So glad.

Looking back I see that, for one, it meant our doctor would not try to determine Jonathan's worth and pressure us to make decisions we weren't comfortable with. Not that I had that on my mind at the time, nor did he ever pressure us in this way, but I watched this documentary called "Little Man" a long time after J's birth, and the doctor in THAT film was so horrid about what the parents should do (or not do) for their son. I was so glad that my neonatoligsts weren't like that doctor.

A year ago today I didn't really know what Jonathan's primary doctor was like. I had pictures of him resuscitating my son, pictures that Steve had hastily snapped while trying to remain unobtrusive while I was being sewn up after surgery, but I had little data about him. Oh, I knew a little. When the social worker took me to pick out a quilt for Jonathan, donated by sweet sewing souls in our area, she mentioned that he had a sense of humor. And liked trains and cars. I was sure to pick a quilt with trains and cars. But that's about it.

He hadn't really been present since Jonathan's birth. It was mostly due to poor timing. He'd gone on vacation three or four days after J's birth, and hadn't returned. We hadn't really seen him before he left, either, though, other than at delivery and a glimpse a day later of him charting outside our room. He never came in. Not while we were there. I wondered at his distance. Did he purposefully remain away those first few days before vacation because he knew the likelihood of J's sustained life after his time away was slim?  He had seen a lot of babies not make it. Did he not want us to ask if our son would live? We knew better. But he didn't know that.

The team approach meant J didn't have one doctor, he had six or seven. And many of them were present (and not on vacation. They made a point to come in and warmly greet us and comment on his size or personality or preferences. They seemed to care.

With a split team, though, we weren't going to do anything about Jonathan's heart. When the situation presented itself better, they would then make a decision about closed heart surgery to fix the PDA. Maybe new information days or weeks later would tip the scale. For the time, though, all we knew was that his heart wasn't working as well as it could. Maybe that's part of why his lungs weren't working as well, too.

But he was still alive.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Not sure I'm happy with this, mom

TODAY - 2013

J finally got to meet his other male cousin, JB, today.  JB is a four year old who has been praying for him since birth.  Who can blame little JB for praying?  I mean, he has EIGHT other cousins, all girls. In some sense, it probably felt like J was his only chance of playing guy games.  That's at least a year off yet, but it'll come.

J himself was crabby yesterday and today. Unusually so.  He smiled once for his uncle, but then threw up on him a minute later. So I'm not sure what that smile REALLY meant.

This afternoon he cut his first tooth. Teeth, actually.  Two ragged edges poking up from his lower jaw.

No wonder the poor guy was crabby.

Okay, happy now!

After that, he was all smiles and showed off for his grandparents. He rolled all over the floor, grabbed his feet, passed teething biscuits from one hand to the other and then stuffed them in his face (gotta use those teeth after all), and all in all charmed everyone he met.
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Tonight before blogging, I read this article.

I've written about our choice to resuscitate and the difficult decision that can be, so you can probably guess my response.  I thought, "Wow, she makes the temporary seem so grim."

She sees only the smallest part of a portrait. She needs to re-frame the image and see a larger picture. Does she not remember that this is life we are talking about? Potential for life -- good, full life?

Yes, parents must know that there may be disabilities. Yes, we SHOULD be well-informed. But this article is so horrific. It forgets about the hope each day of life brings. It almost makes it sound like parents aren't ready and would make a different decision if they really understood.

We weren't ready. No. Who could be?  But we were well informed. Now, a year later, we would not have changed our minds with any more information. You'll see, if you keep reading or if you know us, it wasn't a walk in a park of a year, either.

J won't remember his pricks or the pain he went through. How much do you remember of your first three to five months of life?  J's dad was a preemie, too (for unrelated reasons) and has some similar scars. He doesn't remember getting any of them. He carried his prematurity through his early childhood (and in some ways into adulthood), but he still enjoyed being a kid. He's a doctor now. Dependent on a med or two as a  yes, but he's had a really good life.

The PT told mommy I had to experience different textures.
I'm like a scientist, figuring out the world.

She forgets that in this article, that the pain is temporary. The disabilities, if they come, may continue for years or a life time, but the pain doesn't usually last. She forgets or doesn't know  that the disabled among us are not without great worth.

If all goes well some day that micro preemie will be a four year old, sitting in the sun on a beach, enjoying the breeze. He might even be doing so with eyes that see and feet that run and arms that swim. But even if not, he'll be alive, and the same breeze that floats across my brow will hit his. And he may giggle. And the fight - it is hard, yes. She describes me and my son perfectly. Brain bleeds (only one, and small), bowel perforation, yep, post traumatic stress, yes. All of that. But the fight - the fight is worth it.

We think this, and we're only 7.5 months out of the NICU. Scars fade. Hope remains.

Thanks, docs, for giving the choice to us.

Chil'axing, with arms flying like only preemies can!
I love having my arms out to the side.
Mr. Jason, the physical therapist, says it's a preemie thing.