Monday, November 25, 2013

Day 122 (Nov 16) - Hearing the music

The evening of day 118 Mimi prayed, "Please have Jonathan come home tomorrow. Help Jonathan come home the day after picture day. He really should be in his crib, that one, in his room. So you just need to heal him so he can be here." He wouldn't be coming home to his crib for over a month, but exciting things happened that week anyway.

By day 120 they had finally gotten Jonathan extubated, his lungs finally clear enough from the pnemonia that he could start to breathe more on his own. They had thought he was almost there on day 119. They then waited until after his eye exam, just to be sure he was ready. There was a good chance that he'd need a second eye surgery, given how severe his retinopathy of prematurity had been. Just after the eye doctor delivered the good news -- his ROP was regressing still -- the doctors took out the tube.  He was on CPAP for many days after.

On day 121 Jonathan, still on CPAP, finally hit five pounds. His incubator top had been popped a month before, but they didn't want to give him a crib until his gut surgery was behind him. But it was clear, he was a big boy now. And it was time. A real baby crib. Not the one Mimi had prayed for, but we were still thrilled. The days of the incubator were behind us.  He had graduated to a "feeder/grower" baby.

With the new crib came crib toys, including a music box.  On day 122 J both came off CPAP and began to listen to music.

Jonathan had developed the ability to hear shortly before birth. He hadn't heard much beside the ding of hospital bells and human voices.

When the electronic music of the NICU music box started up, Jonathan became very still. He concentrated hard. This wasn't a hospital ding or an alarm. This wasn't a human voice or acapella song. This was different.

It took him a few minutes, but then he became visibly excited. THIS was something new, and he thought he liked it.

Realizing how great music was, we promptly went out and bought him a CD player. We brought in Go Fish's CD Snooze for him to enjoy.

To this day his favorite music is a capella. He has an appreciation for strings as well. If you want him to smile or respond, even on his worst of days, he will cheer up to good music. He will look merely confused if you sing off tune.

Saturday, November 23, 2013

Day 115-118 - swallowing sorrow, finding hope, & preparing his nursery

November 9-12, 2012

Last time we looked back a year, we recounted JAM'S surgery and horrible recovery.

He survived that night, clearly. Over the next week his bowels slowed, and THREE different infections were found, two in his lungs (one of the two was staph) and one a developing absess around his incision site. The heavy sedation of the first few days came at a cost as well, as the fluid in his lungs was unable to move around.

They guessed it would take only a few days to extubate him - or remove the breathing tube. Instead it took nearly a week to move him from the breathing tube to CPAP.

To see him back on a breathing tube, fighting infections again -- and here he was FINALLY reaching his due date (which occurred on day 118) -- it flooded me with emotions.

I knew he was more stable than he'd been with any of his other surgeries, but I started to have flashbacks to everything that had happened to him before. I was always on edge. I needed quiet or I would find myself about to snap.

I made an appointment to see my OBGYN and a psychologist. I was not above seeking out help.

I went to a second hand sale on my way home from the NICU on his 115th day. It was time to get him a wardrobe.  I spent around $40 on clothes and shoes and socks for the next year and a half of Jonathan's life. It was so sweet to be able to prepare for his homecoming. There was nearly no one there, and the people running the sale knew our story, so they helped pick out what they thought would be the cutest of clothes for the micro preemie. He'd make it. The $40 check I wrote out was proof. He had to now.  Besides, he was officially out of his gestational age. We had passed his due date.

In celebration of his due date, we also set up his nursery the next day. The girls took sponges and made wall paintings under the pretext of cleaning off the walls of his bedroom. "That is a beautiful sunrise!" Mimi exclaimed to Ella as they painted with water and sponges.

"I know why we're cleaning the walls," Mimi told me, "Because otherwise Jonathan might see the times that I drew on the walls as a baby and, you know... [tilts her head to side and shrugs her shoulders] he might decide it's okay to draw on walls. That'd be bad."

Yes, Mimi. That'd be bad. I'm glad you finally agree.

Mimi was horrible about confining artwork to paper. We'd been disciplining and redirecting and hiding pens and pencils for years. For her pencil drawings were not just an issue of being a baby and not knowing better. She had discovered forgotten pencils and defiantly defiled our walls only months before. She'd gotten smarter with age and the four year old drawings were much smaller and harder to see with the naked eye, but her artistic bent had earned her the privileged of scrubbing the walls more than once in the past year.  I can see how she drew the connection.

Ella decided his walls needed to be sponged down to get rid of all the germs.

So as Steve and I assembled a crib, the girls scrubbed sunsets into the walls, with soap and water instead of pencils and pen.  They squeeled with delight as their drawings disappeared and then reappeared, morphed into a different scene by their creativity and the yellow sponge.

Just before nap time the girls smothered the mattress in hugs and kisses and we set it into Jonathan's future crib. "When Jonathan goes in the crib and moves his arms and legs a lot," Ella explained, "It means that he's getting our hugs and kisses."

We were getting there. We were almost all set for him to come home.  Steve and I put his new used clothes in his drawers and added a changing table as the girls slept.

After nap Ella examined the rest of the room set up. She explained to me that I was wrong to set the rocking chair next to the crib. It was too far away from the outlet. How was I going to pump milk if I couldn't get the pump near the outlet?

I told her I hoped I wouldn't need the pump as much when Jonathan came home.

"Oh yeah," Ella exclaimed, "Because he'll be nursing!"  She gave me a thumbs up and a smile, very pleased with herself that this problem had been solved.

The girls analyzed the room and in the end decided it was pretty good. But it was not quite done. It needed their touch.  They grabbed a half a dozen baby blankets and got to work piling blankets in his crib and smoothing them down so that they were perfect. They'd spend the next month going into that same bedroom and smoothing those same blankets, waiting for him to come home.

Wednesday, November 20, 2013

PAM - FOD #15 - Why and how to prevent preterm birth

Prematurity Awareness Month
Fact of the Day
Days 15-30 (smile)

Q: What causes a baby to be born prematurely? What can I do to prevent a preterm birth?
First, a note. I was going to take the last half of prematurity awareness month to tackle some of the causes of preterm birth, one per day, and also point to some tips for preventing preterm birth.  But I'm rolling them all into one post for two reasons:
1. Blogging has proved to be a lower priority to me than other life events. You'll see that my FODs slowly die off and more and more days are skipped as the month goes on. I give no excuses, except that I think I was right to put this as a lower priority. The twenty or so of you that faithfully read this blog probably didn't care much. If I do this again next year, I'm writing all the posts in one go so that I know I'll post them daily. 
2. I realized I'm not qualified. I don't understand preeclampsia or premature rupture of membranes. I don't even know why I delivered early. I had a perfect pregnancy up until just shy of 21 weeks. My chart says "incompetent cervix" but the doctor admitted that he wasn't sure if it was IC or preterm labor. And my cervix didn't really thin until the very end. Not a perfect picture of either. And I had zero risk factors for early delivery, so I'm not sure I could have prevented it. Live a less stressful life, maybe. But that's hard to do.

So instead of a blog post a day, I'll roll it all in to one, and point you to Mayo Clinic and What to Expect When You're Expecting for more information. 

A: Sometimes (like with me) we don't know why a baby is born early. The mother is healthy and (I'd like to think) has done everything right. You're at higher risk if:
  • You've had a preemie before. 
  • You're having more than one baby at a time (twins or triplets are often born early.)
  • You conceived through in vetro fertilization. (I've wondered, though, is this because you're more likely to have multiples through IVF? I'm not sure... In any case, lots of studies think that IVF is part of the reason we've seen an upswing in number of preterm births over the past decade.)
  • You have placenta previa - where the baby's placenta covers the mother's cervix.
  • You've had preterm premature rupture of membranes (PPROM) - when the water breaks before a mom hits 37 weeks and before the mom has gone into labor. Note: you can stay pregnant for many months with PPROM. If you've ruptured early in pregnancy, have hope. It doesn't mean impending delivery. I didn't have PPROM, my membranes ruptured during labor ("spontanious premature rupture of membranes" or SPROM). I only stayed pregnant two days past my water breaking. But those two days were essential for JAM.
  • Other uterus, cervix or placenta problems (See?  This is why this is all one post. I'm unqualified to speak to this. Since I can't really tell you much, I'm quoting Mayo Clinic's website for the rest of my list. I recommend going there for more information).
  • Alcohol, cigarettes, other drugs. (Don't do drugs. It's bad.), other nutrition issues, infections, high blood pressure, stressful life events, multiple miscarriages or abortions, physical trauma/injury, Unusual shape of uterus

To prevent preterm birth:
I found a fantastic website here that talks about what you can do to stay healthy while pregnant, and what you can do to avoid having a preterm birth. It explains why each of the tips below is important. To summarize:
Be healthy. Don't smoke or drink or do drugs. Take your prenatal vitamins. Eat well (small snacks often are good) but gain weight at an appropriate rate - not too little or too fast. Drink water, brush and floss your teeth and see your dentist (FOR REAL! It's for the health of your baby), use the restroom when you have to (don't hold it), and talk to your doctor if you're worried.

Sunday, November 17, 2013

PAM FOD #14: World Prematurity Awareness Day

Prematurity Awareness Month
Fact of the Day
Day 14

No question and answer today, just a recognition.
Today is World Prematurity Awareness day.

JAM last year, finally off breathing support after
his second to last NICU surgery.
I stand with those who have lost a child because they were born too soon, and I mourn with you.

I give a standing ovation to those children who have made it.

And I stand in solidarity with the parents who have taken life a day at a time, as they wish and hope and pray for the best things for their children.

Too many people have found this blog by doing a search for "23 week preemie survivor," and it breaks my heart that others may have to go down what is inevitably a hard road.

Thank you to all who stand and fight so that these kids can have the best chance at living. Thanks to the MFM (Maternal Fetal Medicine) doctors who help keep them in as long as possible, and to the NICU nurses and doctors who take these children under their wings when things don't go as planned. Thank you to OBGYNs who are well aware of the signs that something may be going wrong, and encourage us calmly to go in, "just in case." You all are heroes.

16 months after birth, JAM enjoying life.
He is now both a year old adjusted, and a one year old actual.
Next year, we'll drop the whole "adjusted" nonsense entirely.
And, unlike a year ago, we're nearly entirely positive that there
will be a next year. Слава Богу.

Saturday, November 16, 2013

The second to last NICU surgery

I'm hungry, momma.
Looking back a year we encounter a simple fact. A bigger preemie is not a healthier preemie. JAM had finally hit the weight at which the doctor would be willing to do an ostomy reversal - a full 2 kilos. They'd cut his intestines apart over two months earlier and removed the bowel that was dead from NEC. For those two months his digestive track had ended in an ostomy -- a part of the bowel that had been brought to the surface of the skin-- and he had a bag for collecting the waste. Ewww, gross, right? (There's a reason his belly is covered in these pictures.) Actually, it wasn't too bad. It meant that for two months we never once had to change a dirty diaper. But we didn't want to go home with it. We'd been waiting for the relatively simple surgery to hook him all back up. ("Simple" as in "much less scary than the first time.")  He was finally two kilos, and the doctor gave us a "go ahead."

What do I hear? Is that impending surgery?
The surgery was delayed several hours for another patient who had an emergency. I remembered when J was that emergency, and so I didn't mind at all, and said a tiny prayer for the other patient. I took the time before transport to take many many pictures of my son. They had removed his feeding tube at his last feeding the day before, and so he had absolutely nothing on his face. He looked good, funny even, and the plumpest he's ever looked.

The surgery itself didn't go well. A year ago I spent the night at the hospital for the first time since my son was born. His recovery wasn't what was expected, and I wasn't comfortable leaving him alone.

I had to attend the surgery (or, okay, I just stayed in the waiting room) alone because Steve was too sick to be at J's bedside.  We figured that the risks were already great enough, we did not want to introduce Steve's germs to the NICU scene.  Here were my thoughts a year ago:

Written Nov 7, 2012 1:28pm by Laura M
Jonathan is currently in surgery...

The hardest part, I thought, would be pacifying a hungry baby, since he's been off all food since midnight.  He was a little fussy at times, and awake most of the morning, but not too bad.  He even pulled out his own IV (he had an IV put in last night because he needed a blood transfusion pre-operation), but didn't do much more than squirm while freeing himself.

Who needs IVs?
But then the transport bed came.  It looks like a little plastic coffin with side holes for your hands to go in. It's always been hard to see him go in to it.  He's been in it three times before today -- once for the NEC surgery, once to insert the broviac (central) line, and once for his eye operation.

He must have remembered the eye operation.  I can't imagine him remembering the other two operations because they were so long ago (for him) and he was so out of it.  But he CLEARLY remembered the transport bed.  He started crying the moment we put him in it.  You know those newborn baby cries?  Those robust cries that babies give you just after birth to tell you they aren't okay with the way they came in to the world?  The loud and angry yells that gain you an apgar score of 10?  Well, he proved to me today that he has those in him now.  He cried, no SCREAMED, until he had a bradicardia event.  In other words, he cried until he passed out, then woke up, realized where he was, and cried until he passed out again.  It was REALLY hard to see.  I finally propped him up on his side a bit (he feels he has a bit more control of his world when he's not flat on his back, he can move a bit more when he's a bit on his side) and then made sure I had his hand and that he could see me.  That calmed him down.  He was then fine, and even smiling, until the transport bed started moving.  Once we hit the elevator he started fussing a little.  They had me come with on the trip down the staff-only elevators since it was clear he was happier with me at his side.  I held his hand and maintained eye contact with him, talking to him about how this wouldn't be as bad, and then let him go in to the operating room.

It will be bad, but not as bad...

In  much happier news, he gave me his first real smile today.  Long before the docs came in to take him down, he looked at me, recognized me, and gave me a grin.

Now we wait for about an hour and a half (so he should be out within the next half hour) to see how things went.

Steve is home sick today.

Thank you for your prayers!

I'll be adding photos soon.

Written Nov 7, 2012 3:28pm by Laura M
J came out of surgery ok, but with a severely elevated heart rate (220bpm). 

Written Nov 8, 2012 1:53am by Laura M
J's heart rates are down to the 160s now, but only because he is so heavily sedated that he's not really aware of anything. This comes at a cost. He's not taking any breaths on his own. His vent settings have recently been increased to help him with poor CO2 output (bad blood gasses).

I guess one comfort is that he is so out of it that he thinks his vent tube is a pacifier. I was worried he'd be mad at us for putting him back on a vent. Instead he is just sucking away.

I'm staying the night with him. First time sleeping in the same building since the week he was born. First time ever of rooming in.


He was so sick, so uncomfortable. I was scared. I didn't like how sedated he was, but I didn't like the pain he was in. He gave me silent wails, his vocal chords back to being pressed flat and unusable by the breathing tube down his throat. He was agitated. He didn't understand.  And when he was finally relaxed, I was scared. He was so out of it. I remembered the way that morphine had played with his system before, slowing his bowels. I worried about what this would mean.

The doctors didn't want anything to build up, either. In place of a feeding tube, they gave him a repogle - a reverse feeding tube of sorts that suctioned contents out of his stomach. Even that simple machine stopped working for him, though, and started to suction the side of his stomach wall instead, creating more pain and discomfort. He was a mess.

The road changes, but it doesn't always get easier.

PAM FOD #13 - Preemie complications: NEC

Prematurity Awareness Month
Fact of the Day
Day 13

Q: What were you most afraid of with your son being so small and early?
A: I'd read a lot of blogs of 23 week micropreemies in those early days, and then I stopped. It seemed like even the babies who made it months could sometimes still die. I was afraid of that death, it always seemed so sudden. The cause of that death in at least one case was Necrotizing Enterocolitis, or NEC. So that became my biggest fear. I know a lot of classicists and they shutter at the word. Because they know that Necrotizing means "death."  BUT while NEC is serious and potentially deadly, there's hope. NEC means a baby's bowels are harboring necrotizing bacteria that's killing off the lining of the intestines (the "enterocolitis").

Scary stuff. If you know a baby who has recently been diagnosed with this, pray hard. A NICU nurse told me those first 48 hours are huge. It can hit any preemie, regardless of gestational age at birth. They say that in general the later the baby is born, the better, and breast fed babies tend to fare better than formula fed babies.

But breast fed babies get it too. See?  JAM -- exclusively breast fed (with an added fortifying supplement of prolacta, which is made of breast milk) -- caught NEC at a month old.

And babies can survive NEC.  They're put on aggressive antibiotics to kill the bad evil killing bacteria. (I hate NEC, can you tell?)  If that doesn't work and their bowels perforate, sometimes surgery can remove the dead bowel. If you retain enough bowel, you may even grow normally.

JAM had one section of his bowel removed due to NEC. It contained 1/3 of his large intestines removed and some of his small intestine.

The good news is, now he can't get appendicitis.

And he faced my worst fear for him at a brave 1 month old and 2.25 pounds (dry weight). It's all uphill from here.

Wednesday, November 13, 2013

PAM FOD #12 - Viability

Prematurity Awareness Month
Fact of the Day
Day 12

Q: When is a unborn baby able to live outside the womb?
A: 24 weeks is generally when a baby is considered "viable," or able to live outside the womb. If you've been following this month's posts, though,  you'll know that that is a hard time to be born, even so, and chances of survival are not that great (though better than a decade ago).  The longer a baby can safely stay in the womb, the better.

Babies born at JAM's gestational age (23 weeks) are in a grey area, and so doctors consult with the parents about birth.  This week's writing prompt on a blog I follow is about choice.  In honor of Prematurity Awareness Month, today's Fact of the Day, and this week's writing prompt, I refer back to my own blog post on choice. I could re-write, but I'd write the same thing.

We chose to resuscitate a "nonviable" (borderline viable) baby, knowing it would mean raising a child who would have special needs for a few years and possibly for the rest of his life, knowing he may never walk, or talk, or eat on his own.

This was one of the easiest hard decisions we've ever had to make. I am so grateful for a spouse that was on the same page with me.

The road that followed wasn't easy. The path that took us here, though, was clear.

Please read other posts that follow the writing prompt by clicking here.

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 herehere, here and here.

Sunday, November 10, 2013

PAM FOD #10 - Costs

Prematurity Awareness Month
Fact of the Day
Day 10

Q: Does it cost a lot to have a preterm baby?
A: Yes. Over the course of the first year the medical bills are about 10 times higher on average than a full-term baby.

Bottom line: If you're pregnant and on hospitalized bed rest and feeling guilty for all the associated costs, know this - it costs the insurance companies or you more to have the baby early than to pay to have you monitored in the hospital.  Keep 'em cooking!

P.S. for concerned family/friends: We were covered through multiple insurances, as preemies who spend more than 30 days in the NICU in the States qualify for medicaid. That said, that's a bit beside the point. It's expensive, so at-risk pregnant mommas keep your feet up and stay pregnant!

Saturday, November 9, 2013

Day 109: Nov 3, 2012, 39 weeks

I haven't wanted to look back on last year's care page. I didn't want to relive it. I remember this week, the beginning of this month last year, and I remember it being so hard.

As we approach his due date, I know it's time to remember. Today would be a good day. But first I had more pressing tasks. Anything is a more pressing task than remembering. I cleaned leaves out of gutters as Steve prepared the garage for winter. The girls made leaf mazes in the back yard and JAM sat in a stroller staring at us all like we were insane for being out on such a breezy day. "It's the last nice day of the year" I tell him.

Then the kids went down for their naps and I started on a load of dishes. There are no plans for birthday cakes or streamers this weekend. That'd be silly, most of us agree. We've already had his birthday, and he's nearly 16 months old.

As I wash dishes and stare out the window at the leaf maze Ella and Mimi have made in the back yard, I allow myself, for nearly the first time, to imagine life as it could have been. I picture myself at the same sink washing dishes a year ago, with a full belly that made it awkward to reach the faucet. My tummy would regularly tighten, and I would look at the clock to see if it was time yet. I'd have a nursery ready, and a birth plan in hand. We would have a name picked out, and my parents would probably be on their way to our house to take care of our girls.

We'd probably name the baby William, after a grandfather who'd passed the year before. Maybe William Carl, we hadn't yet decided. His nick name would be Will. Baby Will, dappled cheeked and probably a hefty eight or nine pounds, would be just about to enter the world. The bigger the baby, the earlier he'll sleep through the night, I would be telling my self with every passing day as he grew but did not emerge. I would probably have regular charlie horses and extra stretch marks.

I would have started nesting, and while the house would not be clean (because when is it ever entirely clean?) the baby's nursery would be organized. Ella would have helped me because she's good with that sort of thing. I'd have found all the boy-appropriate baby items from the girls' collection and would have gotten hand-me-downs from his cousin, who was also born in the same season, so everything would fit just right. I'd probably have mastered some self-relaxing form of birthing, and be ready for my VBAC baby.

I stare at the leaf maze. It doesn't go anywhere, just circles back on itself and ends in imaginary piles. "Bedrooms," the girls had said as they'd given me a tour this morning, "But you have to know the secret password to enter."

My imaginary maze to an imaginary baby's bedroom doesn't go anywhere, either. In truth, the imagining didn't hurt much. I've avoided the thoughts up until now because I thought they'd sting. But the emotions don't go anywhere, and I find it doesn't sting any more. "Oh, that would have been nice," I think, "but that wasn't what would be." I let my mind go down a different trail as I scrub out and rinse the eighth bottle of the day.

The anniversary of his due date this year is slightly easier than the week of his due date last year. That's good, I think.

And then I was ready to look back, at what really was. The words below are from our care page a year ago last week, just a week before J's due date. They describe the emotions I remember. I guess I wasn't far off. I'm glad it's getting easier.


November 3, 2012 [morning]

Jonathan's at a gestational age of 39 weeks. He weighs 1.97 kilos, or about 4 lbs 5 oz. They are starting to talk about doing his surgery next week -- it is about 4 weeks after we'd hoped they'd be able to do it, but he is only now big enough. We hope this surgery -- and getting as much [intestinal] tract as possible back -- will help him grow.

He is a wee little guy but he is acting like a full term baby, often awake, alert and content for 45 minutes to 3 hours at a time.

I want him to be home. My super-hero mommy senses keep "pinging" for my children. The home isn't ready for him, we don't have his crib set up even, but less than perfect and all together - well, I would still take it.

You know when you run a race and you turn the corner and you can see the finish line? For me often that last corner is the hardest. I am exhausted, spent, and want to just walk the rest of the way, knowing that if I stop to walk, I will likely stop altogether, and this is a race that must be finished.

I feel like that tonight. Like I am turning that corner, and far from leading me to sprint, I just want a break from it all.
[And then that evening] 

Jonathan just hit 2 kilos. Actually, he was ambitious and went up to 2020 grams -- a gain of 50 grams in one night. THIS is what we have been waiting for! NOW they'll consider surgery. It means that we are almost done.

Another surgery. A major, gut opening, surgery. I know that then we can start to think about him coming home, but the reality of a major operation on the horizon is starting to sink in and I've lost my appetite. Jonathan may be finally ready for it, but emotionally I am not. I remember the last time -- Jonathan, blown up with severe edema, drugged and in pain, unresponsive. While I know they say it shouldn't be that bad this time, only a LITTLE edema, much less recovery time, not as long on a vent, I still just want it all to be over.

I know that this is nothing compared to what others close to me are going through. In addition to a hurricane displacing loved ones on the East coast, this past week also saw the death of a coworker and a major and very painful surgery for my closest grandmother. My story cannot compare to these.

With all this, it is odd that it is the small things that can be unexpectedly difficult. As I cleaned out J's room tonight so we could start to fill it with baby stuff, I ran in to baby pamphlets from after his birth -- tips to new parents about how to care for a newborn -- covered with a thin layer of dust. Odd. This was the week J was supposed to be born.

Too much emotional weight. I think I'd like to crawl into a tight cave for a bit. Instead, I poke out these words to you in hopes that being heard might be therapy enough to get us through the next month. We can almost see the finish line. Thank you again, so much, for running with us.

And those of you (that we know about) that are running your own difficult race, you are in our prayers and we hope you feel surrounded.

PAM FOD #9 - Preemie complications: Apnea

Prematurity Awareness Month
Fact of the Day
Day 9

Q: What is apnea?  How is it treated?
A: Apnea is when a person stops breathing for 15-20 seconds. You may have heard of sleep apnea. Apnea of prematurity is similar. In preterm babies, though, it's not sleep but an underdeveloped nervous system that is the cause.

JAM sporting CPAP.
This picture is property of
Do not use without permission.
That's the easy way to understand it. In addition to breathing support (like CPAP machines) and monitoring breathing and heart rate, doctors may give medical grade caffeine in order to help stimulate the baby's central nervous system and keep the baby breathing regularly.  As sleepless parents, we were more than a little jealous. We were pretty sure Jonathan's caffeine was much better than the really bad hospital coffee in the family waiting room.

All that said, on crazy days when I feel rushed, I find there's a lesson in all this. Learn from the babies. 

  • Breathing is important
  • Some days it's hard to breath
  • Caffeine may help

I sip my coffee and stare at the fall leaves. Yes, this is therapy. Respiratory therapy. Take a moment, sip some caffeine, breath. Calm the nerves. Breath again. A sigh or two may be good, too. Enjoy the moment, wake up the body. Now the day will be easier to conquer.

As always, I am not a medical professional, just a NICU mom. Do not use my website as professional medical advice, please. Especially the parts that are intended for humor only.

Friday, November 8, 2013

PAM FOD #8 - Preemie complications: Hearing Loss

Prematurity Awareness Month
Fact of the Day
Day 8

Q: Can being born prematurely impact a baby's hearing?
A: Yes. According to one study, around one quarter of preterm babies with a very low birth weight like JAM (below 1500 grams -- JAM was born at 600 grams) have some central or peripheral hearing loss.

For more about hearing loss in preterm babies, visit this March of Dimes site or the Center for Disease Control.

(Family wants to know: is it impacting Jonathan's hearing? Like everything else, we don't quite yet know. Both ears passed the NICU test, and one of the ears has failed the two tests we've had post-discharge. This could be because of wax in the ears, and so the nurses are willing to wait through one more cycle of tests before they become concerned. He is tracking with his hearing milestones, so it's unlikely that he's having issues. At the very least, it's not holding him back!)

PAM FOD #7 - Preemie complications: Brain bleeds (IVH)

Prematurity Awareness Month
Fact of the Day
Day 7

Q: What's a risks for a micro-preemie's brain, being born so soon?
A: About 30% of babies born at less than 1000 grams (or less than 2 lbs 4 oz) have brain bleeds, or an intraventricular hemorrhage (IVH). This is due to the weak vessels in the baby's brain being exposed to the changes in oxygen levels and blood flow (like with ROP), and (in the case of the brain) causing blood vessles to break. These come in a range of severity (Grades 1 through 4, with a grade four brain bleed being the worst). Some babies have bleeds present at an early ultrasound just after birth. Jonathan didn't, but at a scan prior to his NICU discharge, he showed to have one resolving grade one brain bleed.  This probably happened sometime during his NICU stay, and (like I said) is not uncommon. The smaller the preemie, the more likely.  In 90% of the cases, the bleed resolves with few to no problems. It can, however, impact a preemie for life if it damages an area of the brain too severely.

Two things to remember:
1. Preemies are fragile
2. Preemies are resilient

If you're here because your computer led you here when you did a web search for brain bleeds, know that I'm not a doctor. Just a NICU mom. So, if your baby has a bleed, talk to your doctor.

What I want to mention as a preemie mom is that it isn't anyone's fault. If your baby has an IVH of any degree, don't blame yourself, doctors, or anyone else. Remember, these babies are fragile. But they're also resilient. Yours may be one of the 10% of cases that struggle from the brain bleed later into life. Or maybe not. Time will tell.

What my doctor mentioned, before the first brain scan results even came in, is that the brain scan is not prescriptive. It doesn't tell you what will happen. It gives you a fuller picture of your baby, but that is it. Babies can have severe brain bleeds that clear up well, with no long term issues (resilient as they are, always making new connections), or those bleeds may cause problems like cerebral palsy or seizures. You won't know what the impact is until your baby grows.

Here's a more reliable source on brain bleeds.  And, as always, if this concerns you, ask your NICU doctor.

Jonathan's bleed was small, but it still may cause problems. He has low muscle tone, but we doubt it's cerebral (brain) based. That said, he is followed by early intervention specialists and will be until he's at least two years old. These specialists help us discover problems early on so that we can redirect him and make sure he succeeds as well as he can. One year out and we can guess that his IVH won't cause long term problems, but we can't yet know.

Wednesday, November 6, 2013

PAM FOD #6 - Preemie complications: Retinopathy of Prematurity

Prematurity Awareness Month
Fact of the Day
Day 6

Q: How does prematurity impact one's eyes? (Part 2)
A: The world outside the womb is not ideal for eye growth. Inside the womb blood oxygen levels and blood pressure are more or less naturally kept at a good spot for the growth of the blood vessels in the eye. Outside the womb, other factors, including too much oxygen in one's blood cause the vessels to grow incorrectly out from the retina, leading to extra pulling on the retina and possible detachment of that thin but crucial film on the back of the eye. This, in turn, can lead to blindness.  (Retinopathy of Prematurity, likely from too much oxygen after birth, is what caused famous musician Stevie Wonder to go blind.)

Some factors that can lead to incorrect vessel growth in premature babies:

  • Breathing issues - apnea, low or high blood oxygen levels, high carbon dioxide levels in the blood ("poor blood gasses")
  • Heart issues - anything that makes blood flow inefficient or too slow.
  • Transfusions - as I understand it this is because they create more blood pressure in a relatively short amount of time
Unfortunately, for a preterm baby, many of these are unavoidable. I stopped counting how many blood transfusions JAM had gotten after it reached half a dozen. He had heart issues. He had breathing issues. When you're born that early, your body isn't ready for all this baby stuff. The eyes took the fall.

Despite doctors efforts to control how much oxygen was in his blood and monitor blood gasses (the CO2 output or "good exhale" as seen by what remained in his blood), JAM developed retinopathy of prematurity.

There are five levels. You can read about them here. Level one is best, level five is blind (total retinal detachment).  If you hit level three, they will probably recommend laser eye surgery to stop you from getting to level four or five. The surgery zaps protein in the eye in the sections farthest from the retina to help the vessels grow into the outer section of the eye. Gnarly, thick vessels that don't grow into the full eye are cause for concern.

JAM not only got to stage three (in both eyes) - he got there alarmingly fast.  They give that a special name. It's something lovely that they call "Aggressive posterior ROP" or "Rush Disease," and best as I can tell, it's like Plus Disease (which is bad ROP), but a bit worse.

Do you like pictures?  Apparently they made one of JAM's primary NICU nurses a bit queasy, so I won't post any of his here, but you can find blood vessel pictures for ROP + and Rush Disease here.

In normal ROP that has gotten to stage three, laser therapy prevents blindness in 80 percent of patients.  For people like Jonathan, it works only about 65 percent of the time.

Thankfully, for Jonathan it worked, and his ROP slowly regressed until now he is not considered an ROP patient any more, but a CROP (or "has scarring from ROP") patient.

The surgery potentially saves the central vision, but at the expense of the periphery vision. Sorry, Jonathan will never be a hockey player. 

Often, for whatever reason, babies born severely premature also develop nearsightedness. In our case JAM looked good for the first nine months, and then at his appointment at just over a year tested severely nearsighted.  The doctor thinks it's because of all the scarring and abnormal development in our son's eyes. 

"He has A LOT of scars in here!" the doctor said at our last eye appointment, "a LOT."

But you know what?  That's the great thing. A year ago we were mentally preparing for a baby who would go blind. Prior to laser surgery, he would have gone blind.  We'll take the scarring. And a pair of glasses with that, too, if we can.

Yes, my mom totally made this the "FOD" so
that she could post this cute picture of me.
Today he got his first pair of glasses.  So as of about 11 am, the world began gushing over a really really cute baby in his brand new glasses. Jonathan is steadily getting used to being able to see more than two feet in front of himself. It wasn't love at first sight - it took him a bit of time to get used to the glasses. He celebrated by falling asleep ten minutes after we put them on. The visual stimulation was too much.

Sometimes it catches me off guard when he looks into my soul, connects, and smiles. "I didn't think you'd be able to do that, little buddy!"  And now he can do that from across the room.

Yet again science at work, saving babies. Thanks, scientists and doctors everywhere!

PAM FOD #5 - When you're born and you don't open your eyes

Prematurity Awareness Month
Fact of the Day
Day 5

Q: How does prematurity impact the eyes? (Part One)
A: For some babies, they are born with their eyes still fused together. Jonathan's eyes were not only fused together, they remained that way until he was exactly two weeks old (or a gestational age of a day or so past 25 weeks). At one point whether or not your eyes were fused at birth was used as an indicator to determine possible viability. I am grateful that that rather unreliable test is not considered valid any more!

It's easy to take for granted being able to look into your newborn's eyes at birth. For some of us parents, we have to wait a while!

Tuesday, November 5, 2013

PAM FOD #4 - Percentage of Preterm Births in U.S.

Photo from Used with permission.
A premature birth is any baby born before 37 weeks gestational age (or 35 weeks past conception).

A full term birth is any baby born between 37 and 41 or 42 weeks gestation, with your due date falling at 40 weeks.

The dangers of infant death, disability, etc. are much higher for preterm babies. Just follow this blog, you'll see. We talked about surfactant yesterday, and throughout the rest of this month we'll cover other issues that plague the preterm baby.

Which brings us to today's...

Prematurity Awareness Month
Fact of the Day
Day 4

Q: What percentage of babies are born prematurely in the U.S.?
A: According to the March of Dimes, numbers in 2012 (when JAM was born) were better than previous years. A mere 11.5 % of pregnancies ended in preterm birth.  This is down from the worst year for the U.S., 2006, when 12.8% of babies were born prematurely.

Before we get excited, this isn't all that great. As stated above, premature birth causes all sorts of problems, and we have the worst track record for preterm births of any industrialized country. Still, at least we are going the right direction.

Monday, November 4, 2013

PAM FOD #3 -Surfactant

Prematurity Awareness Month
Fact of the Day
Day 3

Q: What do you think is the single most critical medical breakthrough that has helped save micro-preemies?  (or: "What is Surfactant?")

Surfactant is a naturally occurring substance, made up of lipids and proteins, that is produced in the lungs. It helps keep surface tension down.

Think of a brand new balloon you try to blow up the first time. It's much more difficult than if you let that same balloon lose all its air and then try to blow it up again.

Now, picture breathing, and every time you breath it's like you have to open up those airways for the first time all over again. Tough, right?  Surfacant helps you keep those airways from collapsing all the way when you exhale so that (in short) it is easier to breath.

Problem is, it doesn't start showing up in our lungs until about 25 weeks. And if you're a premature baby whose body lacks enough of it, it causes respiratory distress syndrome (formerly known as hyaline membrane disease).  Before we knew about surfacant, babies (most famously Patrick Kennedy) died for lack of this substance.

A synthetic substance, mimicking the natural substance, is now given to severely premature babies through their breathing tube.

This medical breakthrough is the largest reason (as far as I can tell) that doctors could give JAM a chance at life.

And, this, dear friends, is why I love not only doctors but biologists!  (GO biologists!!! You rock! You save babies! WOOT!)

Want to read more?  Read the history of the rather recent discovery of surfactant here.

Saturday, November 2, 2013

PAM FOD #2 - Second trimester preterm labor

Prematurity Awareness Month
Fact of the Day
Day 2

Q: How can I tell the difference between preterm labor and braxton hicks contractions in the second trimester?

A: It's not as easy as you'd hope. If you have any questions about what you're experiencing, call a doctor and talk about your symptoms. Also, check out these sites: American Pregnancy Association, and the March of Dimes for signs of preterm labor.

Disclaimer: I am not a medical professional. Please take this as advice from a girlfriend, not as advice from a doctor. Check with your doctor, not the internet, if you feel like you might be in labor. 

Here are some signs: Is the person pregnant having more than five contractions in an hour? Has she tried resting on her left side for an hour and drinking LOTS of water?  Has that helped?  If it hasn't helped within an hour, call the doctor or go to the hospital.  At triage she will be checked, and while most people will be told it was braxton hicks, for the few of us that found out it was really preterm labor, we will have possibly saved our child's life. If you have any reservations, get it check out!

For me the difference was very small. I was in my 20th week of pregnancy, had had my second trimester ultrasound done over a week before, and all looked really good. I'd had lots of braxton hicks contractions with my other pregnancies, and was sure that was all I was experiencing. Plus, I had NO (zero, none, nope) risk factors for preterm labor. I'd delivered two full term children, and thought myself pretty good at carrying a baby to term.

For me I became a bit concerned when the contractions didn't go away with hydration and rest -- I was having eight to ten an hour -- and they felt more crampy than what I remember from braxton hicks.

 Note: For me second trimester contractions did NOT feel like third trimester contractions. They were mild, like menstrual cramps, sometimes even less painful, and sometimes DID NOT EVEN SHOW UP on a monitor. I told the nurses that I was feeling contractions that were not showing up on the monitor, and they gave me a button to press at the start and stop of every contraction I felt.  Even then it was hard to tell if it was a true contraction or not. I was surprised to find out a week later when being monitored by ultrasound while contracting that even my least painful potential contractions were dilating my cervix.  In other words, it's really really hard to tell.

Since second trimester contractions are not obviously painful and hard to spot on a monitor, in addition to monitoring my contractions and checking my cervix, the nurses had an ultrasound done. The cervix was closed, but the ultrasound showed funneling. Within a few hours of that ultrasound (at 20.8 weeks pregnant) I was dilated 2 cm straight through.

By being extra diligent, the nurses caught that I was truly in labor. Looking back at all the steps taken and the persistence of the medical staff, I am in awe.  This was the labor that almost wasn't caught.

By going in when things didn't quite seem right we were able to keep me pregnant for two more weeks. That, in turn, brought us from a not-viable pregnancy to the cusp of viability.

In hind sight, I shouldn't have pushed that other pregnant lady up to labor and delivery. That said, I will never regret going in. I didn't know it at the time, but going in and risking looking foolish saved my son's life.

Friday, November 1, 2013

Prematurity Awareness Month (PAM)- Fact of the Day (FOD) #1

Prematurity Awareness Month
Fact of the Day #1

World Prematurity Day is 11/17.
Q: What are the chances of survival for a baby born at 23 weeks gestation?
A: It depends on the NICU, and in many places around the world, survival is not possible. At hospitals where "23 weekers" are resuscitated, the success rate is between 15 and 40%. This sounds grim, but this is up significantly from a decade ago where the number was closer to 5-20%.  (All the websites I could find in that last week of pregnancy said 20% as the highest number, so I was delighted to find out that at my NICU the success rate was just under 50%.)

Advancements in neonatal care have made this huge gain possible. This is one reason why I've enrolled JAM in any research study offered to us. They all seemed very reasonable, and any chance that HIS life could help bring that percentage up a bit was very worth the extra paper work to me.

Are you doing your own "fact of the day" series for Prematurity Awareness Month?  Use the hashtag #PAMFOD for your twitter reposts. Or send me a link, and I'll post it under my resource pages.