Wednesday, July 31, 2013

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.

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.

Monday, July 29, 2013

Good Books for Siblings of Preemies

Last year we got an unexpected care package in the mail. Dear soul who sent it to us - thank you. I wish, in your time of hurt and pain, we could do the same for you that this did for us. This was such a blessing.

Her package was full of books for my girls, so that they could understand what was happening to their brother. She knew us well. She knew my girls - especially my Ella - well.

These are the books we got, and my informal review of each in no particular order. (If you have a children's book for/about preemies, and I didn't include it here, it's because I didn't get it as a gift a year ago. Email me, though, and I'd be happy to add it to my yet-in-progress resource page.)  I laid on the couch, with my girls carefully nestled around me (they knew not to climb on my recovering belly) and read these books.

From Click to view more.

The Story of Katie Rose is a great book for older kids (1st grade and above) and for parents!

When I read it to my 5 year old, Ella, I thought for sure she'd get bored-- the book is longer than a kindergartner typically likes, and with real images instead of drawn pictures

That said, she loved it. She poured over it, and I think it gave her comfort to be able to become the "expert" in all things preemie related. I learned about apnea and bradicardia events and the "carseat test" through my daughter before Jonathan got even close to getting to that point, because she learned it from this book.

 The baby here was also a micro-preemie, too, born at about 2 lbs or so. Thus, it covers a large range of NICU experiences It was great to see her grow - it gave us loads of hope that Jonathan, too, would grow and we saw how much of a difference a few months can make for these little ones. Katie Rose has a few older brothers, and this book helps kids learn how to be a part of life in the NICU too. I highly recommend this book. Even if your kids are younger than a kindergartner, get it for yourself. It is easy to digest and makes all the medical stuff of the NICU a little less scary. It comes with a glossary and a picture of Katie Rose at two years old!

Image from Click for more info.

My Brother is a Preemie
Comes in My Sister is A Preemie too.  Cute book, bright secondary colors used, easy to read, not too complicated, short and perfect for older siblings that are a year to four years old.

I am pretty sure No Bigger than my Teddy Bear made me cry.  But then, as a preemie mom, nearly everything makes you cry. Good book.

Oh, and in case I forget to mention it (actually, you'll see this again around Halloween time), Build-a-Bear outfits fit three to four pound preemies. So this book speaks the truth. Thanks to his aunt, J now has a bear to wear his first Halloween costume and his NICU graduation gown. (This book has nothing to do with Build-a-Bear. I'm just on a bit of a tangent.)

Good Things Come in Small PackagesCANNOT WAIT to read this to J when he gets older.  THIS is a book for preemies, to understand all their preemie awesomeness. The boy hears from all the most important people in his life just how little he was (he could fit in his grandpa's overall pocket, he was the size of a pack of butter, etc.) It includes a bit about how the boy is SHOCKED to hear that his parents left him alone in the hospital, and then his parents telling him all about how the NICU staff became like family, so he wasn't alone, he was with people who loved him and could care the best for him.

Sunday, July 28, 2013

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.

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.

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.

Saturday, July 27, 2013

Day 10 - Jonathan a year ago today

About a year ago today, we got some bad news. If you know anything about preemies, this bad news won't be a surprise to you, it is common. But this is the first bad news we received. It came in two bits. First, Jonathan's lungs were getting worse, not better. He was becoming more dependent on the vent and they'd stopped talking about weaning him from it.

This is common. Most micro-preemies have a honeymoon period for their breathing - it looks fairly good for immature lungs for about a week and then it get harder to breath.

 The second bad news was his heart. There is a small vessel that is open in all of us in the womb. It diverts blood away from the lungs (where it doesn't yet need to go) and to the rest of the body. Usually it closes in the first few days prior to or after birth in full term babies. Pressure changes outside the womb make it so more blood, not less, goes to the lungs and the blood is poorly oxygenated, so it causes a very inefficient flow of blood. It is called a patent (open) ductus (duct) arteriosus (of the artery) or PDA. (Turns out if you know Latin and Greek, most medical diagnoses sound, well, less diagnostic and more just descriptive.) This also is common in preemies, and they started him on a round of drugs to help close the vessel. I believe they said that 80% of the time, drug therapy alone would close the vessel.

Despite all this, things were overall looking okay. He was digesting. He had started growing again. We had high hopes that he'd be back up to his birth weight soon.

Another thought about surrounding...

The purpose of this blog is, entirely, to redirect you to an LA Times article that is AMAZING.

A friend sent me the link after reading yesterday's blog.

It's an image that will help all the worst offenders among us (and by this, I'm pointing at me) to remember how to be supportive of the people we care about and avoid putting our foot in our mouth. It's a principle of circles, and where you stand in the circle, and making sure that only good, helpful, considerate things go in, and everything else, all the fears you have or feelings of worry for the situation -- those get dumped to people on outer circles -- people who are further from the pain.

I've not done the article justice, so look for it here. They even have a pretty diagram, see?

I can think of a good half dozen or more people who will read this and say "YES!  THANK YOU!" so I thought I'd post it for you all.

Jonathan is attending his first wedding today, so while I have a fantastic blog post in my head -- and some critical updates on the "year ago today" theme, those may wait until tomorrow.

Friday, July 26, 2013

Surrounded. A bit of grace in difficult times.

You know what the most redemptive thing about last year was?  The feeling of being surrounded.

When we had our second child, we had just moved into town. A friend moved with us -- her husband (also a good friend) had gotten a job at the same place as Steve -- so we weren't entirely alone, but I felt isolated.

After our move and after Mimi's traumatic birth five years ago, we all got the sickest we've ever been. Almost as soon as I recovered from my c-section, Ella got the first of what would be four ear infections -- all in one winter.  We finally got tubes in both ears. Steve had five bouts of pneumonia (no, not just bronchitis -- full blown pneumonia) and I had strep so many times that I ended the season in April with a tonsillectomy.  Only Mimi seemed unscathed, although she too got her fair share of sniffles that winter.  I joked with Steve that if he didn't shape up, they'd talk about removing his lung. Ella, after all, had had surgery, and so had I.  He came back from his pulmonologist and said I wasn't as far off as I'd guessed.  It never came to that, but things were bad.  (Martie, I know you want me to fit in the story about the fan blade and garage door here - but I can't. Not only would the story take too long, but that would be me airing my lowest-of-low moments from that winter, and I'm not sure the world is really ready for that.)

We found a church home about three months in, but we were still so new. I spent a lot of Sundays crying to songs in the pew because (a) I felt alone and (b) I was alone, because Steve was at home battling another round of pneumonia. At one point I was so embarrassed by my lack of spouse, snotty nosed kid, and tendency toward tears that I purposefully went to a different church so that I wouldn't have to answer questions again. Well meaning people who were virtual strangers knew that my husband wasn't there, and I didn't have the energy to look like I was alright with it.

I wanted friends, and I wanted folks to surround me and celebrate with me the new life that was my little Mimi. I wanted folks who knew us, and knew that this life of illness we were living wasn't normal for us. We weren't making this up. We had left a terrifically supportive community in North Carolina, and I feared I'd never get community like that again. We broke hospital visitation rules with the number of people that came to celebrate Ella's birth.  After Mimi's birth it was just me, Steve, and then eventually Ella and my mom who had driven in to town. And our two friends who'd moved with us. And a few parents of friends we'd had in North Carolina, but they didn't want to intrude, and we barely knew them.

I cried when the hospital staff presented me with a hand-made hat for Mimi, a donation to the the hospital. To me it signified that someone cared. Someone, a stranger, was glad that this new life was here, and wanted us to feel special.

I had naively decided that this third child would redeem that horrid year. I wouldn't feel alone this time, I wouldn't have a traumatic birth. This is part of why I wanted so badly to deliver VBAC. We'd finally gone through one or two winters without getting sick, so things would be better. I had friends and community now, so I wouldn't feel alone with this baby.

A year ago I was telling this all to Cindy, the stranger-become-friend who was on bedrest down the hall from me and delivered her micro-preemie less than a week later. She is a woman of God and an inspiration. I was having horrid hospital coffee with her in the family room of the NICU.  "I wanted this birth to redeem all that" I said, "but I didn't have that easy third birth that I wanted. It was even more traumatic than Mimi's birth. But at least this time we're not alone.  We have so much support, so many people praying for and remembering this little guy."

"That experience has been redeemed" she said.

And as I thought about it, she was right. We didn't get the easy birth we'd wished for, but we were surrounded in ways we'd never experienced. You'll see that throughout this blog. Our friends hurt with us, and upheld us, and prayed for us, and spontaneously sent us gifts. We were worn, thread-bare, but we were not alone.

We learned much about community, and about the Christian community to which we belonged. We learned what it was to sit with someone who was hurting. I had known that sitting with a hurting person was never comfortable, I always felt so awkward, like I stumbled over all the wrong word all the time. Like I didn't care enough or I cared too much. Like I could never get it quite right.

I learned from being that hurting person that all that didn't matter. The fact that the friends were there, the fact that they cared, that is what mattered more than the words or fumbles (or, heaven forbid, inappropriately placed spiritual incantations).  I would take 1,000 foot-in-mouth comments, because the fact the wrong thing was being said meant that there was someone saying it. This time we weren't alone.

I don't state this to say this is why he came so early. This is not tragedy making up for hard times. But it is a bit of grace in the hard times.  And it was a lesson in how to love and be loved in hard times. Those lessons are important.

If you have friends who are preemie parents or parents of kids with cancer or just going through a hard time -- they can't be loved on enough. They will have nothing to give, they may not even have energy or time to spend with you, but do not forget them. It is a long road, and they need every ounce of support you can give. Just be sure your support comes with forgiveness when we don't send you the thank you card or don't have the energy to show just how much it means to us. Trust me, it means the world. You touched us, even if we're too worn to show it.

Thursday, July 25, 2013

Day 8 - Of babies, plants, and Ph levels: growing in hard conditions

When we bought our first house (our only house), we bought it for the spacious back yard. It was February. The house we were renting had had a patch of raspberries in the back yard, and fertile soil all around.  But the yard was small. We figured we'd have the same good soil at our new house only a few miles away, and lots more of it. After all, the land it was on had been farm country not too many decades before.

Except that they'd sold off the top soil.  We discovered this in May when we went to plant. We lived on clay.  A nice large lot of clay.

So I've spent the last four and a half years amending that clay. We built a raised bed and added soil. We invested in a composter and have slowly turned our kitchen scraps into more soil.  We have bought hardy plants like raspberry bushes and mint that will grow anywhere. We've learned to make it work.

And we've made some mistakes.

Like me mistakenly thinking that blueberry bushes would be very nice along the side of the house, they'd give such a nice red foliage in the fall and berries in the spring.

Foliage, yes, but berries, no. Blueberries don't like clay.  I'd known that much and dug them a pit of peat moss. They also like acidic soil. You know, like the kind of soil you'd get in a pine forest. Not the alkaline soil that surrounds a house due to the lime in the foundation.

After two years of amending the soil in the bed by the house to make it more acidic and less alkaline, but with no berries to show for it, my daughters and I decided to do a science experiment and see how acidic the soil was.

The answer: not at all acidic. The measures we'd taken hadn't lowered the alkaline levels at all.

So we made a new trench of peat moss in the back yard, under where a pine tree had been just a few years before. We replanted the blueberries. The first year after the replanting we had a few handful of berries to show. This year the rabbits thought it would be helpful to trim the bushes for us over the winter, so we have no berries to show. But the plants (even with the trimming) are healthier. And next year, I am hopeful that we'll finally bring in a crop of berries.

Hang in there buddy! J at 8 days old.
About a year ago I learned we have Ph levels too. And Jonathan's were off. In the NICU they'd test the levels in his blood.  They then design his total perenteral nutrition (TPN) to help keep the levels where they wanted them. TPN was like Jonathan's IV version of Gatorade. And without it, he wouldn't have grown.

The girls and I had had a little tablet, soil, and a small vial to test the soil. I don't know how they tested his blood, but the results were the same: the conditions weren't great for growing, so we needed to find a way to help improve growing conditions.

And for both my berries and my bitty baby -- it has taken time. Longer than if they'd started out in an ideal environment.

But both have proven to be hardy.

I guess we are more like plants than I thought. I am amazed by modern medicine. I am amazed by science.

July 2013 -- a year later

Ella is my 6 year old. She coped with the insanity of last year by educating herself. She used all available resources to figure out as much as she could about Jonathan's life and care.

The result was one sturdy six year old who is terribly interested in medicine and science.

We saw a "Squishy Human Body" at a specialty store last weekend. That got Ella and her twelve year old cousin to talking. Ella wanted that squishy human body SOOO bad, so that she could learn all about anatomy and practice doing surgery. Bec thought it was a disgusting proposition. "Ewww" she said.

"What?" Ella replied, "It's just blood! Everybody has blood. Some people think it's disgusting, but we need it to live, so I don't think there's anything wrong with it. It doesn't bother me!"

Today she asked if she could watch a YouTube video with me on how to change his feeding tube. I said no.  Not because I am afraid of exposing her to that sort of thing, but because I'm afraid that if she watches the video, she'll think she can change her brother's feeding tube herself. Thing is, she probably could. But let's not chance it.

Wednesday, July 24, 2013

Day 7- One week old and looking good!

A year ago today Jonathan had made it a week!  That means that by every account, he was official. And it meant maybe he would live. He had had a week of milk, off and on, and hadn't gotten that terrible bowel thing that kills preemies. (For those just tuning in -- I'd read a blog about a baby born at 23 weeks when I was just about to deliver my baby. That baby had died shortly after they'd introduced milk to his diet so this was my biggest fear for my son.  I'd find out later that that bowel thing was called Necrotizing Enterocolitis.)

The breathing machine had his lungs. His heart had always been able to beat -- and ever since they got his blood pressure under control, that was working. And he was eating. And starting, after falling to 485 grams (1 lb 1oz), finally starting to gain weight again.  His blood ph levels had been a little off, but had gone back to normal. He had had a brain ultrasound and it had revealed no brain b

Things were looking good.

His umblilical line had closed.  Up until this point, they'd been able to use his umbilical cord as a sort of port, so he hadn't had to be stuck with a needle to administer the perenteral nutrition into his blood that was necessary to sustain him.  So they'd first given him a small IV and then within a few days (when it was clear he wasn't getting the nasty infection I had) he would be given a more stable PICC line to get him IV nutrition.  They were even talking about moving him to a less invasive breathing machine.  Maybe he'd come off the vent.

J is awake here. You can't tell 'cause his eyes are still fused shut.
We got to be a part of his care time for the first time a year ago today. I never thought I'd be so excited to change a diaper. He'd been alive a week and I'd never gotten to try.  His preemie diapers were the smallest size possible, but we still had to fold them down to make them fit.  My wedding band is a small size (less than a six) but it fit his upper arm.

My mom took our girls for the night, and Steve and I celebrated our eighth anniversary at his bedside.

J after care time, tucked in for the night.

Day six - The dream

Maybe it was because of the social worker visit. Or the heavy pain pills.  But the day before I left the hospital, I had a strange dream.

I was in an elite sports club for women who were either pregnant with high risk pregnancies or who had just delivered preemie babies. They took me on a tour and showed me where I could get all the free gourmet food I wanted. It was a massive complex that felt like a cruise line and spa for pregnant women and NICU moms.

After the tour was over, I was supposed to have access to all these fancy spa like shower rooms and activities, but when I tried, my passcode wouldn't work. I was told how to get a new passcode, but was so emotionally exhausted that this one last bureaucratic step had me in tears. I sat down next to a big pile of exercise mats and started sobbing as I watched the pregnant pilates group in ugly light pinkish-brown matching exercising outfits do mat routines. I was jealous. Their outfits were HORRIBLY ugly and I wondered why anyone in their right mind would put on a uniform like that. I wondered why they all wore the same ugly pinkish outfit. At at the same time, while I didn't want to be a part of their group, I was a little jealous - they had a group. They weren't alone. Their passcodes worked. Mine didn't. But I was too exhausted to find my way.

So I sat in a corner by some mats and cried.

[I promise, in the next post -- which should be up tonight -- I'll get back to talking about Jonathan.]

Monday, July 22, 2013

Of social workers and leaving the hospital alone

About a year ago I was preparing to discharge from the maternity ward (actually, the maternal fetal medicine floor -- after delivery they'd returned me to the same floor where I'd been put on bed rest).  I have heard many NICU moms say that the hardest thing they had to do was leave their baby at the hospital when they went home.

That wasn't me.

And it's not that I'm not sentimental (I don't think that's it at least), it's that leaving him there -- it wasn't breaking any dreams. I hadn't yet had a chance to dream of bringing a bundle of joy home with me from the hospital. We hadn't made it that far. We hadn't even made it to a viable age. There was no cradle or changing table or carefully chosen clothes to greet him. Indeed, as I looked at him, he didn't look like a baby to me yet. Not really. He looked like a fully formed human, yes, with perfect nails and eyes that didn't yet open and mouth and lips and tiny tiny eyelashes, and fingernails thinner than crepe paper. He had beautiful silky dark hair growing in. But he was not a baby. He was too small to be a baby. If he came home with me, he stood no chance of survival. I knew that. And that trumped any mommy desires or hormonal impulses. There, in the hospital, he might become the boy, the baby, that I dreamed of. But he wasn't there yet. He was, nearly literally, only half-baked.

My time in the hospital, recovering from my c-section was surreal in some ways. And it wasn't just that I was very very sick. When the lactation consultant came by to help me produce milk, it was with a machine. She was not teaching me how to help a newborn latch. Indeed, she barely stayed. She walked in, saw that I knew what I was doing, asked if I had any questions, made sure I'd gotten something, and then left.  I never saw her again.

There were a lot of visitors like that. I'd learned with my first two children that many hospital personnel visit you those first few days after baby is delivered. They all introduce themselves, pass along some information, and then leave. "Hello, I'm Mary from records. How would you like your baby's name spelled?  Here's how to file for a social security card." or "Hello, I'm Jim. I am a specialist in how not to shake babies. Shaking babies is bad. Have you watched the (traumatic) video about shaking babies? (Did you know it can lead to brain damage?)  Please be sure to sign this form before you leave.  It says that you've watched the video and won't shake your baby."

The first time we had a child this signing-to-say-we-wouldn't-shake-our-baby completely threw my husband off. "People would SHAKE their baby?" he said, after he'd realized they weren't talking about bouncing babies or rocking babies, like he'd initially thought, but actually violently shaking an infant. Two sleepless months later and we understood a little better why someone like Jim walked in to all the hospital rooms.We decided that Jim's job was actually very important.

But the point is, you never see Mary or Jim or any of the others again. They come, they deliver their spiel, and then they leave. The familiar faces you see are those of your OBGYN and maybe the pediatrician.  Except I wouldn't get a pediatrician visit. My baby was under the jurisdiction of neonatologists, and they were seeing plenty of him.

So, when the social worker walked in, I had two reactions. The first very internal but intense reaction was "why is there a social worker in my room? I didn't do anything wrong. I didn't mean to have my baby early!" And then, once I realized that she had forms for me to sign that would help get Jonathan the medical care he needed, I relaxed a little. In my head put her in the category of Mary and Jim. I'd never see her again. She was just there doing her rounds.

Except that I would see her again. A lot. She became one of my favorite people in the NICU. So, word to all you NICU parents out there -- befriend your social worker. If you don't have one, you should, so find out why you don't. I'm actually glad I saw her a lot more often, because the eight state programs that Jonathan immediately (or within a month of birth) qualified for as a result of being under 1000 kg at birth?  They were difficult to navigate. "That helps with what?  How do I -- huh?" I barely understood when she explained it to me patiently the first time.  It would take another two or three times before I got it figured out. And my husband and I both have advanced degrees. (Me just barely, but it counts.) So, we're supposed to be smart people.

The social worker worked the social system where I could not. She had the energy and know-how to find Steve and me the resources we needed to manage NICU life. Our gas bills quadrupled (oh, I should add that to the list of things to buy parents of preemies -- gas cards!!) but she helped us navigate how to be reimbursed for our hospital trips.

Our NICU had this weird system of getting a primary nurse that seemed a lot like a poorly designed courting or match-making game. It seemed that just as Jonathan got sickest, all the nurses that knew him best got reassigned to other babies. I know a little of why now, but it was frustrating and hard. I didn't like continuing to meet new nurses, wondering if they  might be the one who would become his primary. I didn't like having to re-explain my son's temperament.

Beth, my social worker, helped me figure all that out. She knew who to talk to in the NICU, and advocated for me. She finally found me (three months into a five month stay) a person or two who would be primarily in charge of my son. I've never felt more unpopular in my life.  Three months to get a date for my son?  I thought he was something spectacular. Why didn't the nurses want to watch him, too?  But it wasn't him. It was the match-making game. I'm sure I'll get into this later, so I'll drop this thought for now.  But, the point is, Beth was my solution to this.

In short, she was amazing.

Social workers -- you are amazing.

Friends -- hug a social worker.  They are amazing people.  When you're down and out, they help pick you up. They help you figure out how to get the resources you need to survive.

So, even though I didn't think I needed a social worker, even though I felt a wee bit offended that they had sent me one (seriously, is child protective services next?!?) -- I'm glad they did. I cannot speak highly enough of that profession or the people in it. Social workers, you see us at our worst. Thanks for helping us make it through. Thanks for persisting when we act like we don't need you or don't understand the eighth time you've explained something to us.

I was preparing to leave my son at the hospital about a year ago today. I spent as much of the day in his hospital room as possible. On day two I had finally looked at the binder they pointed out on our first day there. It told us how to care for a preemie at various gestational ages. It started at 24 weeks. I laughed nervously with Christina about that. He wasn't yet there. Guess there are no road maps for a 23 weeker.

I would return home to a rented hospital bed and a chalk board hippo affixed to the wall at the foot of the bed.  The hippo still read "23 weeks 1 day." I would erase the sign, and while I no longer used the chalk board, I would count each day of life now.

Sunday, July 21, 2013

What to buy for a micro-preemie?

A year ago today I had a handful of friends drop by the hospital to say "hi" and "congratulations."  For a few of this handful, Steve, the proud papa, brought them to the NICU to show them Jonathan through his isolette.  That shocked people who, like us, worried that they might break him. They all declared their health (no sniffles allowed!) and scrubbed in extensively before walking in the room, and even then they weren't allowed to open the isolette or touch him (or anything that touched him) so I felt fairly confident about it.

It was a little odd feeling. Part of the reason I wanted close friends and family to see him was that I wanted them to know him. I didn't know how much time we'd have with him. For the moment I felt like the isolette shielded him some.

I wanted others to see how perfect his fingernails were, how he already had dark brown hair growing in and the same widow's peak I had. I wanted them to marvel at how one so small could be so beautifully and completely formed. I wanted him to be known.

At the same time, I wanted him protected. And protected here meant low lights. No lights. Keep his eyes safe. Keep a blanket over the isolette. Looks were peeks and not long stares. Conversations about him happened on the way to the room or after we'd left the room, but we tried to keep his room quiet.

When he got moved into a crib months later I would become much more protective about even who visited. Knowing someone might carry a cold and not know it, might cough and have him breath it in, these things became risks. It might have been an illusion, but it seemed that the isolette protected him from us, from us. It seemed all right to bring one or two people by. If nurses and doctors could see him, I wanted close friends to see him too.

What do you get for a person who just had a baby, when the baby is very very sick?

A week after our son was born, another friend had a baby born severely prematurely. Like our son, their child was also on the brink of life and death simultaneously. We mourned that the pregnancy had come to an end, we didn't want them to join us in the NICU.  Not for months, if they could help it.

At the same time, they had a new baby.  We'd walked the bed rest road with them, from separate hospital beds.  We wanted to get something to celebrate the birth.  Even if this wasn't ideal, this was the baby's birthday. We must celebrate.

But what if their child didn't make it?

We understood better why we weren't getting showered with gifts and balloons, why reactions from friends were awkward and sometimes strained.

It's hard to know what to do.

In fact, it's hard to know if doing something, anything, might come at a very inopportune moment, if it might not hurt more than help. What if I buy this cute outfit, send it to them hoping their child will grow into it, and then... and then something happens?

To back up a bit, we saw the other baby's dad a few days before his child was born, a few days after Jonathan was born. Possibly even a year ago today, if my sense of timing is right.

 "Is he still alive?" was his first question to us as we passed him near the hospital food court, me in my wheelchair on my way back to the recovery room from the NICU, and Steve pushing from behind. From anyone else, to anyone else, it might seem rude, insensitive to ask. But from him, I saw in his eyes, it was the plea from a praying father.  He was asking if Jonathan was okay, he wanted our son to be okay, but just as much he was asking, "Can my child make it?  If my child is born today, what might happen?  Is there hope?  Can babies like this live?"

"Yes!  He's doing great!" we replied. And since he, like us, hadn't had a chance for a NICU tour, Steve made arrangements to show him the NICU -- just in case his child was born early too.

And the baby was. And now we were, a week out from our own delivery, trying to figure out how to celebrate life in a way that wasn't over the top, but still acknowledge and rejoiced in this new being. Because acknowledging is important. Remembering that we are new parents, that a baby has been given to us -- it is so important. We remember these early days.

So, finally, to my list.  If you have anything to add, or other suggestions, post them in the comments below.

THE LIST of micro-preemie baby birth present ideas


  • A card. Have it celebrate. Tell us you're praying if you are a praying sort of person, but also tell us that you are delighted for the new life. Because a part of us is also mourning the loss of all the baby celebration stuff. So, celebrating with us is important. But being sensitive to our possible sorrow (though not all of us experience that) is also important.
  • Gift cards to food places. Gift cards to restaurants or fast food places near the NICU is just as important as bringing us food. Unlike the moms and dads who take the baby home with them, our baby was stuck in a hospital. So we spent as much time as possible there, which meant we didn't have any time to put a casserole in the oven on some days.
  • Food and snacks.  Food is always good, even if it is a casserole that needs to be put in the oven, because it spells "comfort" and "love" -- and NICU parents need both.  If you can give us something that we can easily throw in a Tupperware and bring to then NICU with us, all the better.
  • Blankets/quilts. Especially hand made thick (crocheted or knitted) blankets and quilts.  We can use them to cover the isolette to keep the light out when the baby is still so small, and can use them as a blanket for the floor for "tummy time" when the baby is bigger.
  • Very tiny booties and hats.  If you're crafty, you'll have to make these. Or maybe there's a place online to buy preemie booties. My son couldn't wear them until he was three weeks to a month old, so if it's a very early micro-preemie, but the first "clothes" that these kids wear are hats and shoes.  Just make the booties out of stretchy fabric and/or so that they have a tie at the top so they can both go over the pulse ox monitor and still stay on. And if they're too big (they probably will be) baby will hopefully grow into them in the next few months.  Plus, this is a small gift -- a memento of how much the baby is loved.  Note that keeping heat in isn't a function of these earliest hats, so make them soft, comfy, and stretchy as well.  If the baby is on CPAP, they can't wear a hat probably.  So then just go for the booties.  And don't make them of cottony stuff that will get miserable in humid temperatures, because the baby's isolette will perhaps, for the first week, be very moist.
  • Flowers, but be careful. I love flowers.  I appreciated the ones that were cheery and bright. I appreciated the potted ones that I could add to my garden.  I did not like the huge bouquets that seemed appropriate for sympathy or funerals.  I also wasn't sure quite what to do with the ones that looked all baby appropriate. I couldn't put them in Jonathan's room, and at my house -- empty still of all baby gear, his room still set up to be my "bed rest room" -- they just looked silly.
  • A care basket for mom and dad. Something that says "recover well," because recovery from birth -- especially traumatic birth -- is hard.  Put in it food and snacks, cute cards they can write in, fancy sodas, cookies, (I like food, can you tell?) maybe a conversion chart from grams to pounds and ounces (those are really helpful), possibly even a pretty sign that says "welcome baby" to go on his or her hospital room wall.  They won't see it, but mom and dad will.
  • Our NICU had magnetic bulletin boards for every baby.  If your friend's NICU has the same, buy cute magnets to go on the board.  Bonus here is that (a) has a purpose in decorating the baby's room and (b) isn't huge, so if baby doesn't make it, mom and dad can either keep or toss (depending on how they deal with grief) without feeling too bad about it. 

DON'T BUY (at first)

  • Stuffed animals.  Most NICUs won't let us put these in the baby's room, so we will have the stuffed animals at home.  Plus, stuffed animals are preemie baby sized -- lots of opportunities for triggers here.  
  • Balloons -- although I have to say, when Jonathan came home, my neighbor tied a balloon to our mailbox that said "It's a BOY!!!" and I nearly cried.  Perfect. But these baloons are not allowed in the NICU, so again, without the baby at home, we just have a floaty celebratory item screaming a reminder that our child isn't there to celebrate his arrival with us.
  • Clothes -- well, not yet at least.  It was over a month before my baby was able to wear clothes, and then the hospital provided cute preemie shirts.  We DO want clothes (please!) but you can wait until the baby is near 27 to 30 weeks gestation to buy anything. If you get anything for a baby under 32 weeks, you may want to knit/sew it yourself. You may find even the preemie outfits to be too small.
  • Large items.  Again, we want them, eventually -- so if you really wanted to buy our baby his/her crib, do. But wait a bit. Or send us a gift card. My mother-in-law was born early, and her mother says that there was nothing worse than coming home every night for three weeks and staring at the empty crib at the foot of her bed, knowing her baby was far away.  Speaking of which -- showers.  If we're first time parents and then we have our baby three to four months early, we probably do eventually want but might not yet be ready for a shower. Not at first. Tell us you want to throw one, but understand if at first the idea of leaving our baby alone for a night to accept gifts for our baby -- it might be too much.  Give us a few months.
All of these are my opinions only, your friends might be different -- so ask. Here's another blog to give you some other idea. And this is designed based on my experience as a parent of a micro-preemie.  Premature babies born later in the pregnancy have different needs, so while the no balloons or stuffed animals stuff probably still applies, the other things may not.  And if you are reading this with a friend in mind, thank you for caring!

Saturday, July 20, 2013

Third day - bee stings, baby, and birthday

The weekend that Jonathan was born, Steve's mom had gone up to her mom's house to check in on her.  Steve's grandma lives a few hours away, and I think of her house more as a cabin than a home. It sits on a hill overlooking a large, deep blue lake.  It is blocks away from a fabulous little sail boat town that specializes in selling coffee, books, specialty jewelry, clothing, and fudge and chocolates to tourists who come in the summer.

It's nearly always the perfect blend of sunny and breezy. It's a haven.  It is also home to my favorite biking and running trails.  The view is like the Mediterranean, the weather is like heaven.

That's where Steve's mom, Karen, had been, and other than the call from us announcing our return to the hospital, and a few pesky bee stings she'd gotten, I think she had enjoyed her time.

That would have been about a year and five days ago.  By a year ago today, July 20, 2012, Grandma Karen was back in our town watching our girls so that Steve could be in the hospital with Jonathan and mom could be in my hospital room watching me.

I'd had a good rest, though, and a decent day. The antibiotics were doing the trick and I wasn't feeling so ill.  And my mom, "Grandma Rachel," looked exhausted. So I told her she should go home for the evening, have a real night's sleep.  Steve, too, was exhausted. I assured them I'd be okay on my own.

At home that evening they looked at Grandma Karen's bee sting.  It looked bad. It was red, and streaks were starting to climb.  She'd been in to the urgent care clinic the day before.  They'd had her draw a line around the rim of the red.  The red had now outgrown that line, and the bee stings, concentrated around her toes, hurt.  They went into the ER.  She was nearly admitted for overnight observation.

She was treated, and it was decided that as soon as she was well enough, she would be driving home.

She had been battling a small cold, so she had never been to the NICU.  This infection in her foot solidified it. Despite the fact that she had been our biggest supporter and help while I was on bedrest, she wouldn't be meeting her grandson.  Not yet.


A year ago today, J was doing ok.  They had started and stopped feedings a few times, nervous that he wasn't handling them well.  That was fine by be, because I was nervous about this too. Jonathan's blood pressure had stabilized and they'd taken him off of blood pressure medicine. Not surprisingly, he was jaundice and so they had him under bilirubin lights. Steve and I were getting a lot of information, but not necessarily processing it. Our care page a year ago today was full of statements like "some of his levels are slightly off, but machines are helping with that" and "Jonathan is off food again for 12 hours or so, some chemical I've forgotten was off or something." I read back and wonder "what chemical? Was it his kidneys or did we hear 'residuals' and think that was a chemical?" but back then all this was new to us, and all we could really absorb was if he was alive or not and if he was progressing or not.  These were our concerns.  We'd learn the medical side of it all eventually.
J under a bilirubin light, 2.5 days old


Today, July 20, 2013 We are at Grandma Karen's mom's house on the lake.  Grandma Dorothy's home. All of Steve's sisters are here, as is his niece, an uncle, and several cousins.  My daughter Ella and my sister-in-law Katie went with me for a run/walk along my favorite jogging path this morning.  We passed a small building that looked like it was supposed to be an old church, with white crosses all around the back.  But it looked too perfect and the crosses looked too close together to be a cemetery.  They looked all the same, and without names on the white wood.  We wondered at what it could be.  "Maybe it's a dog cemetery?" I offered. "Maybe it's a cemetery for little babies or kids or something," Ella offered.  "I hope not!" said her Aunt Katie, "That'd be sad!"  "I'm glad Jonathan didn't die." Ella returned. Katie laughed nervously at the six year old's raw honesty, "Me too." she said. "Let's see if we can run to that tree" I offered, and we left the pseudo-cemetery behind.

After running off our first breakfast, Katie and I joined her sister down town for a brunch outside at a favorite restaurant.  Jonathan joined us. We enjoyed the breeze and the sun. Jonathan has finally gotten used to the outdoors thing, and was having a decent time.  He loves his aunts, and showed off his standing for them. On the way home we dropped by a few garage sales so I could get school clothes for Ella, who is growing faster than my pocket book can afford.  As we walked along, looking at the tables of clothes laid out in the sun, my sister-in-laws asked me about his eyes.  "So, he can see like a normal baby, then, they think?"  "Yes," I said, "At the last eye appointment, he could see perfectly."  "That's amazing!" they responded, "That is so cool."

Sometimes I think he looks and acts like a normal full term baby. And he does. But there's always a bit of awe in that around our family.  Normal eyes on this little guy?  Amazing.  He's not dead?  A bit shocking to hear stated so bluntly out of his sister's mouth, but - amazing. I guess I'm not the only one who has a hard time believing it.

J under a blanket, 1 year and 2.5 days old.
At home, while Jonathan (oblivious to our awe of everything he does) alternated between playing with his new-found (finally!) toes on the floor, and pulling the blanket over his eyes to hide himself so that he could roll over and reveal himself to us again, Mimi went to bring the loot from the garage sale to the car.  We had been sure to buy Mimi (who normally only gets Ella's hand-me-downs) a few outfits of her own. She was especially excited about the comfy looking brown corduroys.

"Don't go out without shoes on!" Grandma Karen reminded her as Mimi stumbled forward, barefoot, arms full of clothes, "There are bees that live under the porch, so you really can't go out without shoes.  You might get stung."

Getting stung at Great Grandma's house was not a good idea.  Grandma Karen would know.

Now I leave you with a few pictures of J doing cute Jonathan things. I'm off to celebrate his birthday - again!
J and his aunt

J and his other aunt

Friday, July 19, 2013

Day two in the life of JAM: Sepsis -- knowing the right decision was made.

A year ago today: Evening of July 18 through the 19th, 2012
I know that about 48 hours after a c-section, you start to really feel it.  I remember almost sending Steve home after Mimi's birth, saying I didn't need him the second night, that I felt fine. My sister-in-law, Sasha set me straight. "You'll want him there tonight," she had said, "the second day was always the worst day for me." Sage words.

So I was so very glad that my mom was going to stay with me the second night.  She's the perfect person to have around when I feel miserable, and I knew I'd feel miserable.

Sure enough, that evening the extra pain started.  It became hard to move. I was sore. By around seven or eight I told the nurse I didn't think I could get up to go to the bathroom. I did get up, but it was harder than earlier in the day.  Earlier in the day I had walked a little -- walking often the day after a c-section is important for the healing process, I remembered that. And knowing I could get to see Jonathan if I walked to the wheelchair had been quite the motivation to get me up. They had started him on 1 ml of colostrum every three hours this first day, which surprised me, and made me nervous.  I'd remembered those other blogs. The ones where the baby didn't do so well with food. So I needed to be sure to see him. As much of him as possible.

But now I was back in my hospital bed, and not feeling that great. A few hours after the aches got worse, it felt like they spread. It wasn't just my abdomen that was sore, it was every muscle in my body.  And the room was so cold. I had the nurse bring in more blankets. I had a difficult time rearranging myself with the new blankets. It hurt. As she helped I told her I knew this was because it was the second day after a c-section. She looked disapprovingly at me and said I shouldn't be that sore. Maybe I was complaining too much. She looked annoyed.

An hour later I told mom I needed more blankets. This is where my mom is the superhero. I'm not sure I could have convinced the nurse that I wasn't a needy self-absorbed patient. The nurses eyes and body language had basically said as much many times since she came on shift. But mom got the job done, and she could be more forceful than I had energy to be.

Then I asked for more blankets.  I was still shaking.

And then at about 11:30 or so, I suddenly got hot.  Very hot.

All 15 blankets (and, really, I'm not sure this is an exaggeration) were removed.  And I was still hot.  And weak. But I felt a little better. Weak, sore, but not shaking any more. All I could muster were quiet moans with every move. I couldn't think. It reminded me of the few times, before my tonsillectomy, where I'd get strep three months on end. I'd barely have fought it off, and I'd have it again. By the end I'd stare into space and want to cry, but have no energy for tears.

This is what that felt like.

And I was still on heavy narcotics.

The nurse sent up someone at about 1 or 2 am to draw some blood, see if there was any infection.  They started me on an antibiotic shortly thereafter.

Within three hours I felt better.  Much better. By the end of the shift, the nurse obviously had turned around.  She saw the real me by five in the morning.  The me she'd seen earlier in her shift?  I think she understood that wasn't a self-absorbed overly-needy patient, that was a very-sick overly-needy patient.  I don't think I've ever felt that sick in my life.

When all the labs came back 24 to 48 hours later, they had found a rare form of strep in my blood.  They had also found ecoli in my blood.

Ecoli and strep.

Jonathan was started on antibiotics, as a precaution.

But he never got sick.

The OBGYN suggested that perhaps the two infections were caused by some of what was brewing in the amniotic fluid, that it had entered the blood stream during the surgery or something of the sort.  At least I think that's what she suggested.  She didn't know for sure either.  She used a lot of big words here that I didn't understand and didn't have the energy to ask about, but I think I got the gist.

Basically, taking Jonathan out the day we did?  It might just have given him the chance he needed.  Had he stayed in, he might be fighting what I was fighting. And I wasn't doing too good of a job fighting it myself.  I couldn't imagine him trying.

We made the right choice.

Thursday, July 18, 2013

Day one of life

A year ago today Jonathan had survived the night.  He was now one day old. To me, that meant a great deal.

It meant that he was legit. No one could call him a stillbirth.

It sounds really morbid now, but it mattered to me then - I hoped he would make it to one week.  Somewhere on the vast internets, I'd read that a baby is considered a stillbirth or perinatal death if they live for less than one week. After that they move into a different category.  I didn't really know what that meant, but I wanted my son to be a "real boy."  I wanted him to be the boy that lived. At least one more week. Because one more week meant maybe another month. Another month meant maybe he'd come home. Him coming home meant he'd probably live.

He had needed a blood transfusion to make it through that first night because of low blood pressure.  This was the first of many times when he would receive blood or blood parts. And it was the first of many times that this blood would save his life.

The amount of oxygen in the air he was breathing was somewhere around 25 or 28%. Steve and I were proud of this. We thought it was a good sign. The oxygen in our air is generally 21%.  So he was doing pretty good.  He was on a ventilator -- a machine that forces air into his lungs.  A tube went down his throat into the lungs and made sure that he had the air he needed and forced each breath in.

The amount of oxygen in the air he breathed was only one of many things closely monitored.  They determined how much oxygen he needed in his air by the amount of oxygen in his blood stream.  They tried to mimic the inutero experience as much as possible.  His isolette was full of steam, even, to protect his immature skin.  A pulse oxygen monitor was strapped like a band aid to his foot and read out his blood oxygen in real time on a monitor.  Too low (in the 70% range or lower) and it could hinder his development.  Too high (upper 90% range) and it could lead to retinopathy of prematurity and possible blindness.  So, when the monitors rang off, the neonatal nurses came in and changed his vent settings to keep his blood oxygen in just the right space.

They told us not to worry about the alarms unless they worried. I was glad they said that, because the monitors rang off a lot. Soon I learned to read the flashing lights. By about a month in I could tell why the monitors were ringing and knew how serious it was (or wasn't). I knew if it was his heart or lungs or blood pressure that caused the alarm. Before he was discharged I'd even learned how to read the accuracy of a pulse-ox reading based on the wave length shown on the computer.

Normally pulse ox monitors are put around a finger, but Jonathan's foot was about the size of a finger, so in the NICU pulse ox monitors go around the baby's foot.

Jonathan, day two. The red light on his foot is the pulse ox.

Steve was pulled three ways now instead of two. He had our two daughters at home, his wife recovering from major surgery, and a son in critical condition in an isolette.

My mom came into town. We now had two grandmas living under our roof. And you know what? We needed both of them. Steve still had summer work projects going on, theoretically. He had a student assistant working for him, so he had to make it into the office at least once in a while. But he wanted to be with his son. And his wife. And his girls.

The women and Steve sat down to discuss how to manage everyone's care. My mom and Steve would take turns caring for me, Steve's mom and Steve would both be in charge of the girls, and Steve would take care of Jonathan.  That's sort of how it went down.  My mom would also, of course, help around the house along with Steve's mom. And there was to be a good deal of chatting over coffee, as I imagined it, because I cannot imagine my mom and Steve's in the same house without coffee and chatting.

I was oblivious to most of this.  I was spending my time in a hospital bed. Again. Still.

My mom meets Jonathan
I'd had a dream the previous night.  I was at S.S.'s house.  In the dream she and her husband (also S.S.) had this great home with a spacious, modern open floor plan. The dining room moved seamlessly into a living room with modern furniture and a gorgeous fireplace.  They were speaking French.  E, my best friend from high school, was there with me, we were all drinking wine, and she was joining in the cordial conversation.  S.Ss' young son and daughter -- or was it two daughters? -- (in real life, estrogen is in short supply in their household) were calmly playing in a back room with plush carpet, a playroom that you accessed by going through a beautiful study with hardwood floor. I think they were on the floor playing dominoes. The actual game, not the noisy knock-over version. See? It was definitely a dream. Plus, I don't think the S.S.s and E had ever met. The only thing they had in common was their love of fine dining and the French language.  Oh, and me.

I was searching -- for someone -- thinking it'd be nice to have -- someone. I thought there should be someone in my life. Maybe kids someday. I was sort of hoping it'd come to pass. I think they were talking about setting me up with someone. I don't speak French very well, even in my own dreams, but I'm pretty sure they had some ideas about how to remedy my lonely situation. And I was pretty sure there was someone. But I couldn't remember who, or why he'd left.

I woke up from that dream and was a little disoriented. Hospital lights. Pink cabinetry. I looked over. Steve was rooming in with me in the hospital.  The man on the uncomfortable couch-turned-bed -- I remembered him. I felt a little odd, and hurting. Vulnerable. I thought that was a good sign that he was there with me. I thought, "oh, that's my love. He's here. That's a good sign. Maybe he wants to make this marriage work."

I wasn't alone after all. But it'd been weeks of mostly a hospital bed, mostly sleeping in a room by myself, and my subconscious was feeling it. The drugs deepened the vividness of the dream. A few moments later I realized that I had two, no three, kids, too. I could go back to sleep. I tried to turn a little. My tummy muscles were not working, so shifting my weight was painful.

Around breakfast my pediatrician stopped by to check on me and the scar.  She apologized for what she called the railroad tracks on my tummy. "I couldn't use the scar from when Mimi was born" she said, "because your uterus was still too small.  The baby was too low, so I had to make a different cut."

She seemed truly apologetic.

She also explained that because of the cut she needed to perform in order to deliver the little guy, I wouldn't ever be able to have a vaginal birth.  Somehow the death of that dream didn't matter as much to me as it might have three weeks earlier.

I had a baby. She had now had a major part in saving the lives of two of our children. She needn't apologize for an extra scar on my stomach.

I was wheeled to see Jonathan once or twice that day, but since it was hard to stand up, and since sitting in a wheelchair too long hurt too much, I could barely see him when I was in the hospital room.  Steve or my mom always needed to go with me -- both to wheel the chair and to help me stand and sit.  I was a bit taken aback by the name attached to him.  His first name on all official documents was still "Baby."  I had told them his name at birth, I'd even spelled it for them, so why was he still "Baby?"  We would have to have that changed. He'd lived, after all, so he was official.

To me he did not look like a new born.  He was my son, I desperately hoped for him, but he looked so little, too little. So translucent. His eyes were fused shut like a little kitten.

But it didn't matter.  He could grow into a baby, I knew he could. If we could just buy him enough time. And he was alive.

A written snapshot of today, a year later, July 18, 2013:

"I have a theory" Steve said as he fed Jonathan on the couch, "We didn't have a baby boy."
"No?" I said.
"No, we had a cupid!" he said.  "It explains his cuteness, his small size,"
"How he always throws his arms back and tries to fly!" I offered.
"Yes! and his commitment to the immaterial realm!" Steve turned the bottle a bit in his mouth, "Hence his lack of interest in food!"
Here Jonathan started smiling. Yep, dad, you're on to something.
"I will look up on the internet how to raise a baby cupid." Steve said to Jonathan, in all serious, "But for now, let's just assume that you need milk."

Half way through the bottle Steve stood Jonathan up on his knee and tickled J's neck with his beard. Jonathan giggled uncontrollably.  This was a good game.

Wednesday, July 17, 2013

1st Birthday Pictures

Here are some pictures from this morning.  I have edited the blog and added more pictures for the whole day, so if you looked at this post earlier today -- it's changed now.  For the story of his birth a year ago, scroll down or read here.

Started out the morning with some light reading


Posing for the camera

Cute sibling pic fail. We'll try again this afternoon.
We began today by giving Jonathan his first present - the shirt he's wearing in these pictures.  The handling of how to hand it to him was traumatic, with the girls fighting over who and how they'd get to show him his shirt, but in the end they marched around the couch, each holding a shoulder of the shirt, and sang "happy birthday."  Jonathan was all smiles.  He could tell this was all about him, and he loved the gift.

Then came pictures, well-documented above.

Then we went to his weekly physical therapy appointment. This is at a clinic across from the children's hospital that was his home which, in turn, is connected to the hospital that delivered him and that took care of me while I was on bedrest.

So we started with PT. I told R, his physical therapist, that this was "Jonathan Appreciation Day" and that we were giving anyone responsible for his current great state a bag of treats.  I told her to make sure all the PTs and OTs that worked with him got some, as well as the folks at the front desk.

Next we crossed the bridge (watch for more on "the bridge" later on -- I have some memories of this bridge) and entered the children's hospital. We skipped through this building and went to the adult hospital, up to the fourth floor. First things first. I'm surprised I remembered the floor number. I walked off, checked, yep. I'd gotten it right.  This was where the patients of the maternal fetal medicine folks stayed. It was the floor for high risk pregnancies. I went to the front desk and delivered our package.  First a thank you card to the doctors and nurses for making the right decision a year ago on multiple occasions.  They made all the right calls that ultimately made it so that Jonathan had a fighting chance. It was a close thing. (Keep reading, you'll understand after tomorrow or the nest day's post.)

I also handed them a sheet with pictures and a birth story on it. They have a wall of baby pictures and success stories lining the hallway. When I was finally given wheelchair privileges while on bed-rest, I poured over those images. "How long until my baby can live?"  -- there were no images of 23 weekers back then.  I looked at the board again today as the nurse tried to find a spot for my success story sheet.  Again, no success stories or pictures of babies born at 23 weeks. Maybe this might give a mom or dad some hope.  Maybe. Bed rest on the brink of new life is so hard.
At the hospital, checking out the gifts we were about to give.

Then, finally, up to the NICU.  Most of my favorite nurses weren't around, but one of my favorite greeters was there.  Greeters -- the ladies (and gent) who remembered my name and kept me on track, delivered my NICU mail and encouraged me for five months. It was good to see her. There was also a custodian who remembered me. Actually, I think her badge said "something-environment specialist" -- not custodian -- but as far as I'm concerned that's a better name for her anyway.  These are the ladies (mostly ladies) who kept the hospital clean. A clean hospital means less disease. Less disease means less sick babies and a higher success rate.

They all ooohed-and-awwwed over Jonathan. They commented on how big he was getting.  For the mom of a "failure to thrive" baby, this is the highest compliment in the world.  He's BIG!  They think he's BIG!  Forget the lady on the elevator who just said "I forget that they come that small," here these people think he's BIG!

Jonathan, for his part, could care less. I tried to get him to smile, but he'd had enough of walking around. It was lunch time. After his bottle he was much happier, and in the car he fell asleep in about two seconds flat.

He was sound asleep at our second-to-last stop, the OBGYN's office.  He was sound asleep even after I transferred him to my shoulder. The receptionist offered to see if my doctor was available to come receive our gift for her herself. I sort of hoped she was. The last time she'd seen Jonathan was when he was in a transport, about to be taken down for surgery at two months old. She hadn't really gotten to SEE him then.  Before that she'd only seen him as a pop-bottle sized baby, newly born and with all the odds against him.  I wanted her to see this sleeping sack on my shoulder. The baby that looked and was a healthy, happy baby.

But she was busy with a patient.  I'd like to imagine she was busy saving another baby somewhere.  OBGYN in a super-hero cape.  "All in a day's work," she'd say.

But the staff got the candy, and I'm sure the doctor will get some too, I stuck in recent pictures for her, so she''ll see it wasn't all in vain. She can take back that sympathetic "congratulations" now and replace it with a robust, heart-felt, sung-to-the ceiling "CONGRATULATIONS."  THIS new life, he'll be staying around a while.

We then stopped by a bakery shop that is run by a respiratory therapist who works in the NICU. She agreed last night to cook up some one-but-not-yet-one friendly cupcakes for my son.  He's eight months adjusted, so his cupcakes can't include anything that an eight month old can't eat. She was happy to oblige, as her kitchen can do vegan, and so we have the obligatory cake pictures below!  We enjoyed a low-key birthday at the park with a few friends.  I should say, we as a family did.  It was a hot day, and Jonathan was tired. So he was more confused about why we were getting him stickier than excited about discovering sugar.

Since this blog is about lessons learned through a micro-preemie, and since this is his first birthday, I send you to a friend's blog.  She describes what a day like this means better than I ever could.

Happy Birthday J!