The birth story of my son, born at 23 weeks

July 17, 2012  [warning: this post contains graphic birth details as well as dreadful looking pictures. Skip to the last paragraph or two if that sort of thing makes you uneasy.  Or skip this post altogether.]

The nurses and doctors had some serious talks with me today. About my water breaking. Did it really break? The test they normally do for this sort of thing would come back positive, because I had also had some spotting, probably because of loosening circlage stitches. But the volumes of amniotic fluid that they saw in an ultrasound made it look like I hadn't ruptured.  I still had lots of amniotic fluid.

No, I ruptured. I said. I was sure of it, I said.

Maybe I just peed, they suggested, it happens and it's nothing to be ashamed of.

But (without going into detail) the physics of that didn't seem right.  I think I muttered, "I didn't feel it in my pants..." I was sure I'd ruptured. What else would cause that pop and warm gush, even if it had stopped?

If you ruptured, they said, we have to let this pregnancy take its course at this point.  If contractions start up again, we'll have to let you deliver.  If you didn't rupture, we can perhaps consider other steps.

Maybe we should check, just to make sure I really did rupture. I said. Maybe I sealed back up. 

They suggested an amniocentisus to put a dye into my amniotic fluid. It was a harmless dye. If it showed up in my bedpan, I had ruptured.  If it didn't, I hadn't, and my body would pick up the dye and I'd pee it out a few hours later.

At the thought of a large needle, I said, "well, but I'm actually fairly sure that I ruptured. So, is there any other reason we'd do this test?"

"It would allow us to look for an elevated white blood cell count in your amniotic fluid," she said. "It would give us early warning signs to see if you were fighting infection.  That would help us know if your baby is in a safe environment or not."

Maybe the leak had sealed and there was no sign of infection. That did it. Yes, I could handle a long needle. It meant that I'd have more information about my baby.  Maybe we could keep him in.

The needle caused cramping -- bad cramping. And any cramping was bad to me because I worried that it would throw me back into labor.  It didn't.  Just a few cramps that hour, and that was it.

The dye test failed. My body absorbed and voided the dye before we got a clear indication of output.

But the needle work was not in vain.

At around four or five in the afternoon they came back with the results. "You have an elevated white blood cell count.  We're discontinuing the magnesium sulfate." They unhooked the IV. Now my baby could come.

That's a bizarre situation. To go from worrying about every contraction to being told contractions were ok. I was going to have this baby. Probably in the next day or two.  I could have stood up and started walking around right then, but I didn't. It seemed odd, like turning on a dime when charging down a highway at 80 miles per hour.

My OBGYN dropped in. She told me I could labor naturally. I had wanted to have him naturally after a terrible c-section experience with my second. She also talked about possible c-section. She said that the high risk doctors were discussing my case and deciding what to do.

I asked if I could have food.  It had been two days.  If I was now going to birth this baby, it might be in a few hours or a few days and I needed real food in me.  I needed energy to endure it.

She chatted with the MFM doctors and came back with a "yes."  I ordered a large hospital meal and then, because I knew it'd take almost an hour for it to come, I sent Steve down to the food court to get himself and me some soup for a pre-supper snack.

The soup was great.  No sooner was it down my gullet than the door opened again and my OBGYN and the MFM doctor walked in.  They had just talked to the other MFM doctor, the one that had done my circlage, and he was not comfortable with the idea of waiting.

"Your baby is going to be born this week. He's in an infected environment, so the sooner he is born, the less likely he is to get sick."

"He's too little to get sick" I said. They agreed.

"We called the other doctor and discussed your case. He wants to do the c-section now, while the NICU staff is still fresh.  They just came on their shift." she said.

My flush face became even more flushed, I felt my skin prickle a bit, then I went white. We were delivering this baby. I looked at Steve.  He looked very brave and very worried simultaneously. He walked over and held my hand.

I've never delivered a baby because it was most convenient for doctors if I did -- but in this case, it made a lot of sense. Have a fresh, awake, alert team of people there to save my baby. I'd worked night shifts, and I knew that even though I got used to the schedule, at 2 am my brain wasn't at its best.  So, yes, I wanted the doctors and nurses to save my baby at 7 pm, not the same doctors and nurses at 2 am.

The OBGYN started talking to me.  Earlier that day he had been positioned head down, ready to deliver.  "If he's still like that," she said, "You have an option.  We can take out the circlage stitches and try to deliver vaginally, if it looks like he's coming. If not, I think a c-section would be the best course of action."

He had flipped.  He was now sideways, not ready to come out.

"I'm okay with a c-section," I told her.

"I think that'd be best," she said.  "We've done everything we can."

I'm not sure if it was said, but it was as if both of us had said "Let's get this guy out and give him a fighting chance."

"Have you eaten yet?" my OBGYN asked.

"Yes," I said, a bit downcast.

"What, and how much?"

"Soup," I said, "Just a small soup."

They discussed.  The risk to the baby was greater than the risk of me aspirating food after the anesthetic was administered.  I would be awake for the procedure, so if nausea hit, I'd be able to turn my head to the side.  Regardless of my small cup of soup, it was time.

We were going to have this baby.

The doctors left just as my food tray arrived.  The nurse suggested that Steve eat it.

"You'll have time," she said, "as they prep Laura.  You need your energy too."

He didn't feel he could touch it.  I didn't blame him.  Suddenly food didn't look so good any more.  After I left, though, it took a long time for them to call him back.  A really long time.  So he ate some of the meal.

They wheeled my bed away and put me on the surgical table.  Then they asked me to sit up for the anesthesiologist, so that he could put a needle in my spine. Sit up. I hadn't gotten out of bed in two days. The world seemed strange. If I sit up, then maybe this baby would come. But now they wanted this baby to come. The radical shift was difficult to comprehend.

I'm having this baby.  The little guy that's been kicking around the last few days. I'm going to meet him. He's too small.

The nurse helped me to a sitting position.  The anesthesiologist explained the procedure.

"I want to see the c-section" I told the anesthesiologist. A girlfriend had said she'd watched hers, and I thought it sounded like a good idea.  I needed to know this baby as much as I could. And besides, I was way curious about the c-section process.  Since I wasn't in med school, this was my only option for seeing one in person.  He told me he could get a mirror set up so that I could see my belly over the blanket they'd have up.

I'm going to have this baby.

They gave me a pillow to hug.  I put my head down, curved my back into a "C" and hugged the pillow.

I'm brave, I can do this.

No, I can't.  The world is spinning. I can't breath. Help, I can't breath. Maybe it was the food on an empty stomach, maybe it was nerves, maybe it was the sitting up.

"I don't feel good. My heart is beating too fast," I said.

"You're fine," my OBGYN assured me. "Your vitals look great."

"No," I said, "I'm not fine.  There's something wrong. My heart's racing. I can't breathe. I don't feel so great. I'm faint."

They told me I could lay down for a second. I did.  I felt a little better. And then the soup issue solved itself. My stomach was empty again, and I felt a lot better.

The anesthesiologist decided administering the medicine while I was in a laying position was probably the best course of action.

"I'm not sure I have it in me to watch the c-section after all," I told him, as I lay curled in the fetal position, clinging to a pillow, face white.

In the end, after I was opened up, as Steve was walking in, I changed my mind.

"I want to see the baby born," I said.

He positioned the mirror so I could see.

Out came the tiniest baby I'd ever seen.

He let out a small, barely audible, squak as with jerking movements he flung his arms to the side.

"What's his name?" a nurse asked.

"Jonathan Amos" we said.

"Take pictures!" I said to Steve, "Lots of pictures."

I couldn't see Jonathan. Just doctors and nurses in blue surrounding him, a whole team talking to each other in a medical language I couldn't understand, and working busily on my son.  My husband was two steps behind with a camera, alternating between taking pictures and holding my hand or showing me the pictures.

My OBGYN came to my side of the sheet.

"Congratulations" is what she said.  "I'm sorry" is what her face said.  The sorrow in her eyes.  She didn't want this for me, either.

At that moment I was so glad I had such a good relationship with my OBGYN. I took her congratulations as genuine, her hope as sincere, her sorrow as deep and true.

He weighed 1 pound 5 ounces.  He was about a foot long.

His APGAR score at birth was 2. Only his heart was beating.   HIs APGAR score at five minutes was 6. Everything was working, but barely.

Those five minutes were crucial.

Once he was stable, they put him in a transport to take him to the NICU.

Steve looked torn.

"Go with him!" I said, "I would feel so much better if I knew you were with him."

"We can lead you back down to her once you see him settled." the doctors told him.

After my son and husband left, the OBGYN came back to my side of the sheet.  She squeezed my hand. I was rolled off to the recovery room.

I wasn't as shaky this time.  I couldn't even hold my second child after her c-section, I was shaking so hard. I was shaky this time, but not as shaky. I could have held him. But there was no baby to hold.

In the same recovery room four years earlier, I had attempted to breast feed my little girl.  I couldn't even feel my chest, but shakily I'd held her.  And then I'd laid her down in a baby bed next to me and stared at her as my body recovered from the c-section.  Steve would pick her up and hold her when she was awake. Or he'd hold my hand and feed me ice chips and bring me drinks.

This time I was alone, except for a nurse or two.  They brought me something to drink and held the cup for me.

Steve came back with pictures as soon as Jonathan had been settled in to his new room.  He wanted to be with me. He wanted to assure me.

He's still alive. He's doing okay.

"Do you want to see him?" the nurse asked.

"Yes, can I?" I said.

They wheeled my bed over to the children's hospital through back door passage ways and up to his room.  They pushed machines aside so that I could pull up along side his isolate in his room. The isolate looked like a plastic coffin to me. I told myself it was a womb. A womb outside my womb.  It would hold him for a few more months.  It was not a casket.

The neonatal nurse talked me through his breathing machine, how he was doing, his monitors, the booklets in the room, etc.  She explained that to him touch was too much.  It felt like fingernails on a chalkboard to his system, so they'd be touching him as little as possible over the next week or two.

Then she asked if I wanted to touch him.

I thought I'd break him. I didn't want to hurt him.

But I also didn't want him to die overnight without having touched him.

Steve brought me some hand sanitizer. There was no way to wash my hands. I lathered the sanitizer on and let it dry. I put my finger into the isolette and touched his knuckle.  His fist was the size of the tip of my finger. His skin translucent , stretched and shiny.

Hang in there, little guy, I thought, as I pulled my hand away.  Make it through the night at least.

They finally transferred me up to the maternal fetal medicine ward.  Steve stayed with me overnight. I tried to pump to start my milk going.  The pumping led to contractions which caused an alarm in my head "oh no, more contractions" - which I quickly silenced with "it's okay, he's out now."

Pumping while reclining is very hard. Pumps aren't made for women who have just had c-sections. Sitting up was very painful.  But my baby would have food. Colostrum was the best thing to start his digestive system working. I had to have some for him.  We put it in the fridge in my room and Steve brought it to the NICU the next time he went to visit.  The neonatal nurses were impressed that the colostrum came in without a problem. But my body had been in labor. It knew what came next. After labor comes milk. I wasn't so surprised.

I woke up to my nurses coming in to check on me at two in the morning.  I sat the bed up and pumped again. And I called the NICU. They said I could call any time. Jonathan was still doing well. He was still alive.

Maybe he'd make it after all.

Finding a name

A year ago tomorrow, July 16, 2012,  I was lying in a hospital bed with ruptured membranes. The contractions had slowed but were not going away completely. The neonatologist had come in to consult with us about what it meant to deliver a baby at 23 weeks gestation, and to discuss with us best ways to proceed if the baby was born that week. It looked very likely.

Steve had spent the morning telling family that I was still pregnant, but in danger of delivery, and asking friends and relatives to pray. I still was not allowed to eat. I was wasting my time playing games on my phone, resting, or looking on the internet for information about babies born at 23 weeks gestation.

That afternoon Steve and I started to discuss baby names again. He liked the name Jonathan - "gift from God". I did not. I liked Joshua or William.  Maybe even Carl.  He thought those were okay too, but then we weren't going anywhere. So we turned to middle names. Steve had a baby name book with him. He started with the 'A's.  "Amos" he said, "It means 'carried' or 'borne by God.'"

"That's a good name." I said, "because I can't carry him any longer. God's going to have to do the carrying."

So I tried on my first names to match with Amos.  Or maybe Carl.  I was pretty sure I wanted Joshua to be his first name.

"Jonathan Carl" I said in my head, thinking I'd said Joshua Carl

"Jonathan William,  Jonathan Amos."

By this point I realized I was saying "Jonathan" and not Joshua, but no matter how hard I tried, the name Jonathan came out.

So his name became Jonathan Amos.

Jonathan: Gift from God
Amos: Carried by God.

Joshua means "God saves." And while that's what I wanted my boy's story to be, I think God had a different lesson for me. This guy was about God giving. 'This boy, his life, it's a gift from me,' it seemed the message was.

"Okay, God. And, in turn, you are the one carrying him through" was my response.

The gift of Jonathan's life taught me more than just the saving power of God.  It taught me a lot about life and growth, both spiritual and physical. In the end, before Jonathan could say a word, his life had spoken volumes.

I'm not sure why I couldn't get Jonathan out of my head that day, but in the last year I have seen how that name -- better than Joshua or William or Carl -- Jonathan fits. Jonathan is his name.

Choice

July 16, 2012 

 A neonatologist came in. He sat down with Steve and I and started to explain what having a baby at 23 weeks meant.

He told us that for a 23 week baby, the doctors consult with the parents to decide what should be done.  We had to decide if he was to be resuscitated and put in a NICU or if we let him pass in our arms after birth.  But we needed to understand what our choice meant. A week earlier, and he would have been named a still birth. A week later, and the medical profession resuscitates. We were in a gray period.  That is why the neonatologist was in my hospital room.

He told us that at his hospital, a little under 50% of these 23 weekers survived.

"Just under 50%?!?" I exclaimed, "That's FANTASTIC."

He looked a bit taken back. "Everything I've read says more like 20% on the high end of things," I said.

He also explained that the risk of disability was very high. Something like 75% would have severe disabilities that they took through life with them.  Around 20% might have glasses or asthma. Maybe the top 2 to 5 % would outgrow the difficulties of prematurity by the time they were two or three years old.  

"I've worked with adults with severe disabilities," I said, looking up at Steve for confirmation that I was going the right way with this, "If he ends up non-verbal and non-ambulatory, I still want him to have life." Steve nodded.

Life, that's what we wanted. If he would be happy, we would be okay -- even if his happiness came with severe mental or physical disability (or both).  I pictured my old friend Lester, a 40 year old non-ambulatory, non-verbal adult. He liked to swim. He loved to watch the shadows dance. He'd even throw his hands in front of his face and wave them like a mad man to see the show.  He laughed, a lot. He liked animals.  He loved any joke that involved bodily functions. He loved life.

And he taught me how to love life better, too.

I pictured my son, seven years old, reclined in a wheelchair and watching the leaves dance in front of his eyes on a breezy summer day.  If there was a chance at that, even a less-than-50% chance, I was taking it. For him.

After the doctor left, I chatted with Steve some more. There was no doubt, in either of our minds, we wanted this child to be resuscitated after birth.

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

TODAY, July 14, 2013
It looks like Jonathan won't be wheel-chair bound. Cerebral palsy seems not to be his road. And while we can't be absolutely certain, he's meeting all his social and emotional milestones, so even cognitively he is more on track than we expected a year ago.

He still reminds me of Lester, though, and that makes me smile.  Like Lester, he loves his hands.  He stares at them all the time. Two days ago Jonathan stared out the window. A breeze came by. He started laughing. 

The sunlight was shining through the moving leaves, making shadows. He and Lester would get along well.

It is good to be alive.

For more on the complexity and various opinions of resuscitating a 23 weeker, please see my earlier post here.

For other posts about the difficult choices people have made, please visit ellenstumbo.com and read responses to her writing prompt "choice."

Fears

July 16, 2012

Steve being brave

Most of the day on July 16 was spent updating family. Steve spent a lot of time on the phone talking about me and the baby. I'm still in the hospital.  I'm still pregnant. I'm in trouble if I have this baby, though. My water broke. No, they don't induce for water breaking at this stage -- it's not necessarily the end, it just doesn't look good.

Lots and lots of people prayed. And asked their friends to pray. I think I had more people praying for me that day and the next than I even know. 

Steve had remembered the camera this time.  He spent most of the day with me.  He didn't want to leave my side.

Magnesium Sulfate continued dripping through my veins.

That afternoon I had another steroid shot to help the baby's lungs develop.

Twenty-four hours after this, they said, and his lungs will be like that of a baby a week or two longer in the womb.  That made his lungs like the lungs of a twenty-four or twenty-five week old baby. And those babies -- those babies sometimes lived.

I went online and read some preemie baby stories -- stories of twenty three weekers. But I only read two, because (as I mentioned before) both the babies died.

Flushed cheeks from mag sulfate

I learned what to be afraid of. Bowel stuff. One of the babies died at eight days old after food had been introduced.  Their belly couldn't process it. The other baby's death was at two or three months old, and came out of the blue. I was reading the blog, I was inspired by the baby's daily growth, I was feeling like maybe there was some hope -- and then the post changed to a bereavement post and a picture of the baby in a funeral gown. I don't know what happened.

Lungs -- if he's born now his lungs will be very bad. But lungs grow. The gut -- what if his gut didn't work?  If his gut doesn't work, he can't live. I might lose him after they started feeds. 

This was, looking back, an awfully oversimplified view of neonatology. It's more complex that that. But for me, at that moment, I worried about digestion.  Lungs, too, yes. And brain. But digestion most of all. Because of that baby in the blog who didn't make it a month.

But for now, we're buying him more time.  Every hour was important.  Every hour came with a few contractions. But he was staying in.

"No no no, baby, don't come out. That's a no-no" -- my girls words echoed in my head.

The day things went wrong - again

This week is a big one in the life of my "a year ago today" scheme, so I'm starting early.

Today we look at "about a year ago" (minus two days).

July 15, 2012 It started out quiet.  Steve and the girls went to church. I stayed home. I spent some time on a bulletin board site for other preemie moms.  I'm twenty three weeks and one day pregnant, I thought. "I think in a week I'll start an online registry" I wrote, "to celebrate reaching viability."

And then I went to a baby website and started looking at how to register. I didn't actually register, but I thought about getting set up for it.

Steve came home and started making lunch.  Some friends were doing this music concert thing in the community a few days later and had asked if our girls wanted to make a prayer box for it, for people to put prayer requests in or something.  Steve had said "sure," and so while he made dinner, I talked the girls through the best plan for making the prayer box.  They brought the shoe box into my bed rest room and we talked about how they'd decorate it.  We sized up paper on the box. Then they left to find some scissors and tape and markers and glue, and I went to the restroom.

[WARNING: FROM HERE ON OUT, I go into medical details. You may want to skip the next few days.]

I saw blood.  Not much.  Just a tiny bit, a drop or two really.

I called my MFM (maternal fetal medicine) doctor. I figured it probably wasn't a big deal. It was just a spot. And I'd be seeing them on Tuesday anyway. My OBGYN said that, since I'd be seeing the MFM doctor that week, she'd wait a week to see me. She didn't want me going out too much. But she did ask me to check with them about shots when I went in. I'd be almost viable by Tuesday, so it might be about time to start some sort of shots to help speed lung development and/or stop labor. I'm not really sure which any more. I never actually saw the MFM doctors' outpatient clinic.

The nurse at the office asked me to come in.  Steve grabbed my bags -- we realized by now that packing bags before going to labor & delivery was a good idea. No more going in with just a kindle. Snacks and comfy clothes were a must, as was a laptop.  As Steve collected things, I lay in bed. Contractions had started. Just two, but there had been none before.  I looked at the hippo blackboard.  SE weeks, I day. Or, to translate Ella's five year old backwards writing, 23 weeks, 1 day. (By the estimated due date that had been in my file, 22 weeks and 6 days.  I'm glad I had had them change that date again.) Too soon. Not yet. No, not yet.

We called our friends Dave and Deb and asked them if the girls could hang out with them for the afternoon. They agreed. They had just that morning asked Steve to let them know when they could take a turn at watching our girls.  And they were mostly on the way to the hospital, so they seemed the best bet.  We didn't really have time to think hard about this one.

We headed out. By this time the contractions had started again. They were right to have me come in.

We called Steve's mom. She was packing up to come back from her mother's house anyway.  We let her know we were going back in.

I expected to go back up to the MFM floor of the hospital. But they kept me in labor and delivery. They got a shot in me by 3 pm to help the baby's lungs develop.  They put me on IV liquids and then started pushing magnesium sulfide through my veins. It burns. And since it goes through the veins, pretty soon my whole body burned, but it is supposed to stop contractions.

The first hour or so of that treatment was the worst. I was hot, I was miserable, and my heart was racing. I couldn't breathe. They told me I was breathing fine, my pulse ox read something  just under 100%. But I felt like the world was collapsing in on me, so they gave me oxygen. It helped. I now understand why oxygen bars are so popular. I could think again, I could breathe again. I was still a flushed mess, but I was ok.

After a few hours, the dose of the magnesium sulfate was dropped to a more tolerable drip. I was merely flushed.

They told me not to eat. They worried the baby might come at any time.  It was okay, though. Between the mag sulfate and the contractions and fear, I didn't have much of an appetite.

The contractions got more regular. They didn't want to check to see if the stitches were holding, they didn't want to risk infection or rupture.  An abdominal ultrasound revealed a healthy baby and a cervix that, at the top, was about three to five centimeters dilated.  The circlage looked like it was still holding things shut.

At nine pm, after six to seven hours of labor, my contractions finally started to slow to less than eight an hour.  The doctors started to discuss a plan. One day at a time. Let's keep this baby in as long as possible. I'm only six days from viability. I want to make it through the week at least.  Contractions were slowing. The clock was getting closer to tomorrow. Maybe we'd make it another day.

And then I felt a pop and a warm gush in my vaginal canal.

"My water just broke," I said.

"Are you sure?"

"Yes."

I stayed still. I knew that he needed all the amniotic fluid I could give him. I knew that premature rupture of membranes at this stage didn't necessitate delivery. And I wasn't going to deliver. No. Too early. Don't move.

If I shifted my weight, the gush would come again.

Don't move.

It must have been a high break, because the "don't move" technique seemed to work.

I wasn't getting up at all at this point, anyway. They'd bring me everything I needed, including a bedpan.

By midnight the contractions had slowed to about four an hour. By six am they were down to two or three an hour.

We'd made it through the night.


~~~~~~~~~~~~~~~~
Note from today, a year later: A few weeks ago the same friend asked if we could make another prayer box for the community event this year.He thought the girls might like it. He didn't know. I politely (I hope) declined. It hurt to even think about doing this activity again. 

Enjoying summer while still on bed rest. Settling in for the long haul.

A year ago yesterday, we finally had that back yard cookout with our friends from out of town.  The one we were supposed to have the day things went wrong.  The doctors had said that I could walk outside (if it wasn't too hot) and lay out in my back yard. I wasn't to get up and down, but Steve had gotten a reclining lawn chair for me, and I was ready to have a little bit of a summer.

So I sat and watched my girls and their girls play in the back yard, watering the plants with water from our rain barrel, eating s'mores, and all in all having a great time.


I decided that if I was going to be on bedrest for four months,
1. I was going to be as good as possible, at least until 24 weeks
2. I was going to have as much of a life as possible while still obeying rule one. It was healthier for me and baby.

This was my way of doing that.

Things were really really stable.  Contractions were almost non-existent. The worst was over.

Steve's mom was even making plans to leave us for the weekend and see her mother.  Steve could take care of the girls, and I was in no danger.

We were getting there.  We were making this into a new "normal."  I could do this for four months.

------------
I had my baby later that week.

Little guys, big plans, and a year ago today (on bed rest)

A year ago today I was on bed rest at home.  The hippo at the foot of my bed read 22 weeks, 5 days in preschooler scribbles. It had taken some convincing to get Ella to write the numbers the correct way.  It almost said 2 days again. But we'd been working on it, and after a little convincing, the 5 got put down facing the right direction.

I was entertaining myself with processing forms for work.  My boss brought by the papers in a big manila envelope. I told him I could commit to ten hours a week. Just enough to keep me sane and keep things flowing at work, not so much that I'd feel pressured to work if it seemed like laying flat would be the best thing to do.  We'd gotten a work laptop so that I could access the necessary files.  I had that on the desk that came with our medical bed.  I could kick the desk to the foot of my bed when I was done working, and press a button to recline the bed, and stretch out to sleep or watch Drop Dead Diva on the new TV.

My mother-in-law would ask if I needed anything every few hours. She made sure I was well hydrated.  Sometimes she'd just sit in the chair in my room and chat. It was so nice to have her there. She greeted and talked to well-wishers when they came by with food. She watched my children so that Steve could keep doing his job and I wouldn't feel pressured to get out of bed.  Others volunteered to take my children on play dates so that my mother-in-law could get a break from it all.  While things were harried on the outside of the house, in my little day room, they were perfectly pleasant most of the time. Mom wouldn't be with us for long, I knew, but for every day that she could stay -- it was a huge blessing.

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

Today, July 12, 2013

Little guys can do big things too.

That song, written for the Veggie Tales version of David and Goliath, was on the list of "songs that make me think of and pray for Jonathan," listed on a blog by a close friend a bit under a year ago.

I am celebrating tonight because Jonathan fed himself three alphabet cookies.  Alphabet cookies each have 10 calories. Even though a lot of the food ended up smeared to his chest or stored between fingers for later, surely he got at least the equivalent of two alphabet cookies in him. That's 20 calories. That's like an extra ounce of milk worth of calories!

These days I try to not fret. But I do.  Preemie parents seem to be more prone to worry.  Maybe it's because we have heard over and over that the chances of some sort of disorder are higher for our kids.  The earlier the preemie, the higher the likelihood of a complicating factor. We want to do right by them, but we don't always know what "right" is.

I'm fretting about his caloric intake. I know I should be grateful for his sustained life, and I am. But ... it seems he decided that one can either wiggled and move, or grow; and he is way more interested in moving than in growing.  Ever since he learned to butt-scoot across the floor and fling himself from side to side, he's been unstoppable.

And unstoppable means extra calories burned. We try to make up for it by giving him more calories, but more food in his belly plus more movement seems to mean more tummy upset.  Filling him to the brim makes it worse, so we've spent much of the last few weeks trying to figure out the right balance.

The girls are in a heated discussion on the couch about who will blow out Jonathan's candle in five days.  They're pretty sure he won't be able to do it, and they want to claim dibs. Just five days until his birthday.

Ella demonstrates pinch-able cheeks, like Grandmas like.

We met a two month old this week whose hands and feet are Jonathan's size. Jonathan is still wearing newborn shoes and three month old clothing.  But he's a year old, or eight months "adjusted age." Great Aunts and Grandmas everywhere warn us that "they grow up so fast" and "cherish them while they're still small."  But I'm ready to be done cherishing my small baby. 

He's twice his birth height and over ten times his birth weight.  For a normal baby, that'd mean that he'd be around 80 or 90 pounds and over three and a quarter feet tall on their first birthday.  So I should be proud of his progress, right?

I was. I didn't mind when he was small but tracking with the growth curve. But he's been in the 13 lb range for the last two and a half months. A baby his age usually grows about five ounce a week, so he should be at least sixteen pounds by now, but instead of putting on five ounces a week, he puts on five ounces a month.

A friend of mine wrote this fabulous blog post called "Incompetent What?" about the nasty terms that the medical profession has given out.  Jonathan's ailment is called "failure to thrive."  It's common enough that it has a short hand "FTT."  That means that there are lots of other parents out there like me -- not just parents of preemies -- who have seen this label attached to their child.  Makes a person feel just a bit helpless.  It causes us to stuff our baby silly, even when (like last week) he has a tummy bug and would really prefer we let him be.  I think the term "small" would be nicer.

He's thriving in other ways.  He looks out the window, concentrates, and then bursts into a huge grin. He laughs at the humorous things of life. He has learned to say "bahba" -- it means "don't feed me any more of that milk."  He learned the "b" sound because he could make it without opening his mouth to the bottle.  He's small, but he's a smart cookie.

Besides, lots of people were small.  Napoleon was short. (Okay, a quick web search reveals that historians now think he was 5'7" -- just for the record, in my family, that's short.)

Oh, and while we're at it, lots of people were preemies, too.  And they went on to do great things.  Einstein was a preemie.

So maybe Jonathan will be a blend of Einstein and Napoleon.

A ruthless conquer who also happens to be a genius in physics.

I know these smiles all look the same,
but this is my evil mad scientist laugh. Really.

Because that's what the world needs, right? A mad scientist who succeeds at world domination!

...

Okay, or maybe he'll just be small.  I'd take that.  Small is good.

(Unless he's a benevolent dictator who gets me a nice mansion.
Future dictators of the world: remember your mother when you've finished conquering.)

P.S. In case you wondered, yes. I was obsessing over this just a week ago, too. I should read my own blog sometimes.