Day 29 -- Stuck between a rock (creatinine) and a hard place (PDA)

A year ago today we found ourselves a bit stuck. Jonathan's kidneys were starting to fail. I learned that a nephrologist was a kidney specialist. He'd come to see us a few times. He'd told us that JAM was too small for kidney dialsys, whatever that was.  Basically, he said, if Jonathan's creatinine levels in his blood didn't come down on their own, this would be a deal breaker. Creatinine was another word I'd learned. I could now sound more like a medical professional than most of the general population, and we were only one month in to this experience.

By the way, a "deal breaker" was my word.  It what I called anything that would cause his death. I couldn't bring myself to say "death," especially when people asked for updates. So I said "deal breaker" instead.  I also would say "take home baby" instead of "survivor."  I wanted to know if he would become a "take home baby." I didn't dare ask if he'd survive. I wanted to throw the grim into the shadows as much as possible.

If we could get his levels normal, they could close his open valve near his heart that was causing the murmur.  That would cause his heart to beat more effectively and might help keep the kidneys functioning properly.

But we had to get his kidney levels there first.

He was retaining fluid. While I rejoiced at his weight gain, I knew not all of it was good weight gain.

Here's what I wrote on our care page.  I am amazed at how optimistic I sounded. Here we were in a catch-22: can't fix the kidneys until the heart is fixed, can't fix the heart until the kidneys are working well enough to bring down the creatinine levels. And yet I don't acknowledge how dire it was. Instead I'm rejoicing that he's taking my own milk and may get his IV out soon. Was I ignorant or just trying to keep a brave face? I think perhaps it was a bit of both.

2 lbs 2, eyes of blue, (gootchie gootchie and all that)

Written August 15, 2012 1:04pm

SUMMARY:

• Heart surgery for the PDA vessel, but not yet (waiting for kidneys to improve).
• Neat stuff I: Jonathan's weight statistics
• Neat stuff II: On full feeds from Mom's milk with very little medical intervention needed for nutrition.
• Today's experiences with holding and looking

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Take Heart

Doctors decided on Monday to do surgery on Jonathan's PDA (vessel near the heart) as soon as his kidney function returned to normal.  They feel that closing the PDA now is the best option for him, but they want him as healthy as possible before they do surgery.

The nephrologists dropped by Monday afternoon and explained to me how they measure his kidney function (blood tests, urine output, etc).  They showed me two graph that show the results of the two blood tests they do for kidney function.  These graphs showed how his kidney function got worse on Saturday and Sunday but appeared to be resolving on its own.  Since he wasn't on any meds or feedings that might irritate the kidneys, they decided to wait for the levels to normalize on their own.

Tuesday his urine output was very low and these kidney numbers started to climb again (this is bad).  So they put him on a diuretic.  That seemed to be successful (at least according to the weight of his diapers -- they weigh his diapers every time he's changed).  According to this morning's blood test, those kidney-function numbers are coming back down, so we're back to wait for things to resolve themselves.

The doctors don't think those numbers will come down to a normal level again before the weekend, so the PDA surgery won't happen until next Monday or later.  Another scan on his heart has been scheduled for Monday to take one more look at the PDA before this surgery happens.

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Neat stuff

Jonathan now weighs over 2 lbs. Monday night he was around 2 lbs 3.5 oz, Tuesday he (thankfully!) lost some water weight (remember, he was retaining water because of the kidneys) and so he was down to 2 lbs 2 oz.  He might take off a little more tonight, but should probably still stay above 2 lbs.  That's nice!  (He was looking pretty puffy yesterday with all that extra water.  Looked good on him, except that that is not the way we want him to gain weight.)

Jonathan outgrew his PIC line yesterday, so they turned it in to an IV line.  Then that leaked, so they pulled it out altogether and overnight they gave him his required IV liquids through the IV line they'd given him a few days ago for a blood transfusion (blood platelets and stuff are too large to go through the pic line - they get stuck, so they always had to stick him again to give him blood). Then this morning the doctors put him on full feeds and gave the order to take him off IV liquids.  So, as soon as the IV line from the blood transfusion closes, they'll remove it and he'll be free of those pesky IVs until the day of his surgery (assuming he doesn't need any more blood).

And, in case you missed it, yes, that's right, my milk (plus a little human milk fortifier mixed in) is now alone sustaining my child's nutritional needs. Woot.  Grow baby grow!

He's off most of his medications now.  He's just getting a little bit of saline solution twice a day because the sodium levels in his blood are still a little low.

So, let me get this straight -- he needs lots of calories and fat to grow and he needs more salt for his blood levels, right?  And he's getting nearly all his nutrients from me?   Correct me if I'm wrong (actually, no, don't), but doesn't that make it sound like what I REALLY should be doing for my child is going out and eating more french fries?  Because that's what I'm hearing.

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Today with Jonathan

I held J today.  He wasn't comfy for most of the time because of a wet diaper and possibly his foot IV. (Note: next time change before the holding.)  He tried to find a sweet spot (which included trying to turn his head to the other side by swinging it down to my skin and trying to swing the head around - something he's both not strong enough to do AND that really messes with his vent).  He never quite found that spot, but he became VERY calm when I prayed over him. Very sweet.  Maybe he could sense when momma was calm and that calmed him.

Afterward when I (finally) changed his diaper he was alert and looking around.  It was cool to see that his eyes were both looking in the same direction at the same time and moving together (not always a given for him).  He also seemed to be responding to light.  A few times he seemed to be opening his eyes to look at me as I spoke.  It will be a bit yet before we're able to tell if he will have eye damage as a result of severe prematurity, things are still developing after all, but it was fun to see this step in the right direction.

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 14 - Eyes opened

A year ago yesterday, my mom went home to be with my dad. He was about to go to a slew of doctor appointments to figure out how to treat his cancer. He needed her more than we did.

I mentioned to friends that I couldn't go see Jonathan any more, with my mom (my chauffeur) gone and me not yet recovered enough to drive. Our girls weren't that great in the hospital room, and we were afraid they'd break something or expose J to germs that he wasn't strong enough to fight. Steve and I had agreed we'd take them once per week when they were well, so that they'd know their brother, but more than that was a mess of us hyper-sensitive nervous parents scolding our energetic and excited daughters. So nightly we divided it up. One parent helped with Jonathan's evening cares, the other parent put the girls to bed. It looked now like, until I got better, I would be the parent at home.

A year ago today my friend Katie called and asked if she could take me in for his care time. As he was exactly two weeks old, I wanted pictures of him. Without hesitation, I said "yes" and Katie came around to pick me up.

Kris, a nurse that had watched him several times, greeted us as we came in. She had been the first person to tell me I could hold him during care times, during his bedding change. That was about a week ago. We couldn't take him out of the isolette, we couldn't hold him properly or cuddle with him. We were permitted only to hold him up high enough for the nurse to put down fresh sheets or to "zero" the scale so that he could be weighed in bed. The first time I tried, I had felt like I might break him, but she gave me confidence, encouraged me to wash my hands a fifth time before putting my hands in the isolette, and told me how to handle him to cause the least trauma to his still developing central nervous system. (No stroking his skin, basically.)

To me, he was great physical therapy. He gave me the motivation to try to stand near his bed long enough to cup him in my hands for care time. It was for him that I wanted to be off the heavy pain killers - so that I could drive to see him each night by nine pm, when the bedding was changed. The standing always hurt toward the end, with my core muscles reminding me of the c-section, but it was worth it.

Jonathan's eyes were still fused shut. That's not uncommon for these earliest of preemies. Kris had told me they should open any day now, and that I shouldn't be alarmed or surprised if only one opened at a time, they don't typically unfuse together. She reminded me of this as I put my hands into his isolette to pick him up. She mentioned again how surprised she was that he was in his 25th week of gestation and still hadn't opened them.

"Oh," she said, "Also, parents are often not here for the time when the babies eyes open, so you will probably not be the first one to see his eyes."

I nodded and picked Jonathan up in my cupped hands. He stretched. He must have been sleeping. (Hard to tell when your eyes are always shut, but I'd guessed it because he'd been so still.)  His forehead wrinkled with the stretch, and as though he'd done it all his life, his eyes both opened.

A baby's eyes at that age don't look at anything. But his eyelids blinked twice and squinted for the first time, and since I was the closest thing to his face through the thick clear plastic of the isolette, I'd like to think that they were looking at me.  It wasn't true, not really, but the moment still felt like a gift, and a moment I would have lost if I had stayed home.

Of course, I didn't bring my camera. Seems like a common theme in our house.

The NICU nurses told me they would wait a moment, "to give you a moment with him" before they put the newborn drops in his eyes. Like many things Jonathan, he must have been close to the oldest newborn to get the eye drops prescribed to be given moments after birth.  Then one of the nurses found the camera they use to take pictures of infants upon admittance to the NICU. She pulled it out and took a picture of him for me, so that I'd have some way to remember the day.

This is what I wrote on our care page:
It's almost like seeing the world calmed him.  After we got him all comfy (I changed his diaper, swabbed off his mouth and got the goop off of his newly opened eyes & the nurse put 2 mls of milk in his tummy), he got his blood oxygen up to 100% for the first time I've ever seen (this isn't long term a good thing, but short term means he's very happy). He almost never sats high (saturates high) around evening care time.  Normally he hates to be messed with.  Last night instead he laid there calmly, chomping on the wet gauze I'd brought him for his mouth and staring out at the world.

2 weeks old, 1 lb 6 oz. Moments after his eyes opened, he is squinting from the flash.

Saturating high, by the way, means having high blood oxygen saturation. It means the baby is happy, as he or she is breathing better, taking in air better, and thus less dependent on highly oxygenated air. It's like a preemie's way of smiling.  There is danger if a baby saturates high too much (is always up near 100%) as it can lead to blindness, but saturating high means that the nurses can turn the level of breath support down, so all in all it is a very very good thing.
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TODAY, July 31, 2013 - a year later
Jonathan's accomplishments today were significant. He sat by himself for three to five minutes. The motivator for him was the pail of water toys that the developmental teachers had put before him. He didn't splash at first. He doesn't do most things the way you'd expect a baby would. Instead he methodically worked from right to left, moving every lever he could find, picking up and moving each boat in the water, and then finally practiced dipping his left hand in the water, moving his fingers, and then lifting it out again, while grasping at a plastic fish with his right hand.  He rested his upper arms on the basin to give himself a bit more support and steady himself while standing. He had this almost adult-like concentration on his face, but he seemed to be enjoying himself greatly.

I was proud, so proud.


Oh, and today Katie (the same Katie who brought me to the hospital a year ago) sent me a note with a link to this blog post ("Candid Thoughts on Heavenly Reunions") written by an author and friend who had lost her son at the age of four to cancer. Since I know some of you readers are walking with parents of preemies or those who have very sick children, I pass this on to you. She describes well how best to respond (and how not to respond) to those who have lost a child.

If you have a moment, jump over to her blog. It'll be worth your time.

Day 11 & 376 of J's life: Here I raise my ebenezer

A year ago today I wrote the following on our care page for Jonathan:

July 28, 2012
The good: It looks like J will be able to complete the drug therapy [to close the PDA] today.  A look at his heart tomorrow will tell us if it worked. If all goes well, he will be able to resume feedings tomorrow.

The not so good: He's depending more and more on the machine to breath for him.  His forced breaths per minute is up (from 30 to 45), he's "riding the vent" too often -- which means too much of the time he relies entirely on forced breaths from the vent to sustain him and he's not breathing much on his own. Over the last few days his oxygen level on the vent has steadily gone up (from 25 -- or just above regular air saturation -- four days ago to mid-60s today).  He hasn't maxed out the amount of oxygen he can get from the machine, but it's not so cool that this number has to keep going up.  They are tweaking his TPN (his IV nutrition solution) in hopes that by making it less base of a solution, he'll breath better. (Who knew?)

Oh, also he will get another blood transfusion today for low red blood count in his blood.

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These days are hard. It's easy to look at a peaceful baby sleeping in his crib and know that he's doing exactly what needs to be done to thrive.  When he has hard days, though, I'm reminded of my own helplessness.  He is too young for kangaroo (or skin-to-skin) care -- his skin is too fragile and his neurological system is not well developed. I can't yet hold him and have that soothe him. I want to help him relax, but there's nothing I can do.

Today he is (gestationally) 25 weeks.  Fifteen weeks to go.  This is starting to feel like a long road.

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To end on a positive note, K & E finally got to meet their little brother today!  They've been battling a cold and so weren't able to hang out with him until today.  E's thinks he is the cutest and littlest baby she's ever seen.  K laughed as she looked at him, "He can't speak yet!  He can't even say 'goo-goo, ga-ga'"  They both seem to really like him.

Back to today, July 28 2013, a year later -- a spiritual note

I'm about to get church-y. (You've been warned.)

Our whole family went to church this morning. Jonathan ate his whole bottle while the congregation sang songs. No spitting up, no needing a break even (except to burp). And I'd put a little extra in, so he must have been hungry. A full five ounces down, like a normal baby. Then he went into Ms. Susan's arms. She's one of a few surrogate grandmothers / aunts in our area. He slept on her shoulder for the service. I love it that he can be in church with us. As my daughters say, "It's almost like he's a normal baby now.  He's not a preemie anymore, is he momma?"

The sermon was pretty good. Pastor Nick is talking about psalms. Today he looked at psalms of praise, and he used Psalm 111. He talked about the Israelites in exile. How they tended to forget God, in spite of all the signs he performed among them. That brought him to Psalm 111 - a reminder that God is worthy of praise. He reminded us of God's goodness and steadfastness -- even in his justice and anger. And he reminded us about the tradition of an ebenezer (not Scrooge) -- a "stone of help" set up to remind us of God's great works.

I think of the following hymn when I hear ebenezer:

Come thou fount of every blessing.

tune my heart to sing thy grace;

streams of mercy never ceasing

call for songs of loudest praise

Teach me some melodious sonnet,

sung by flaming tounge above

praise the mount - I'm fixed upon it -

mount of God's redeeming love.

Here I raise my ebenezer

Hither by thy help I've come

and I hope by thy good pleasure

safely to arrive at home

Jesus sought me when a stranger

wandering from the fold of God;

He, to rescue me from danger,

interposed his precious blood.

(or in some versions: "bought me with his precious blood.")

Apparently Pastor Nick thinks of this song, too, because there, half way through the sermon, he made us all stand up and sing it. Being a NICU parent forever shades the way you see the world. And even well known songs like this have put me to tears in the past, because of baby J. I didn't cry this sermon, but down the row Ms. Susan, with Jonathan snuggled in her shoulder, she choked up a bit. (I guess it's not just NICU parents then, after all.)

No matter what the outcome of last year had been, God would be worthy of our praise. He's God. But beyond that we knew that he knew and loved our son. We knew he heard our groaning. Prayers surrounded us. He walked with us. That made all the difference.

But that didn't make Jonathan's path easy or short. You'll see more as his story unfolds here. The next month will be very hard. And those hard days will leave Jonathan scarred. Still, God is worthy of praise.

When the time comes that I finally leave Jonathan in nursery -- probably in about a year  -- you church friends will see that he is a scarred baby. He has about seven easily visible scars, not counting the many that only an ophthalmologist can see.

When you see those scars - when you pick him up and his shirt goes above his belly button, or when he's wearing shorts and you see one above his knee (a failed attempt at a central line placement), or when he is swimming in the lake at a church camping trip - don't be sorry. Those days for sorrow have passed and are gone.  The scars are his ebenezers. They are our reminder - God helps.

Doctors were given skills and wisdom to know when to perform and how to save his life. When things looked the worst, when his kidneys failed or his bowels stopped working (yes, my biggest fear before birth happens to J) -- people prayed, and things started to turn around. Not by our works, but by God's grace.

The pastor today encouraged us to share the ways in which God has blessed us, to raise our own ebenezers. In a sense, that is what this blog does.

It's not that God makes our roads easy, but God walks with us in our troubled times. God still rescues, and God still heals.

This is my praise for today. Thanks for reading.