Friday, May 30, 2008

The Tell.

What happened between the time he was born and now? What about that time?

Exactly. That's exactly what I want to know.

It took time for everything that happened to sink in, as I watched my OB sweating and didn't know why. I asked for blankets and saw his brow furrow as he asked me if I was cold or just shaking.

The placenta did not deliver normally. It had to be helped by a shot of pitocin, then another. My doctor had to manually remove a blood clot, then another. There were bimanual compressions, a fist inside and pressing from outside, all as they tried to get my uterus to contract and get me to stop bleeding. For weeks, months, I had contracted and now I wasn't and that was bad, bad news.

It took time for me to realize that the reason my son is covered in blood in the pictures my doula took is not because I tore, though I did, but because I bled everywhere, on everything. I didn't know until much later that the blood bank had already been called because it wasn't stopping, that the reason my doctor seemed surprised I was asking about my son was because he was so worried about me.

We're fighters, my son and me.

Sometimes I wonder now if what happened in the delivery room was the reason my postpartum nurses didn't massage my uterus the way they had after my daughter's birth. I'll never know, nor will I know which glitch along the way was the reason for the complications I've seen after.

We now believe that the reason for my son's grunting after birth, the reason for the bacterial pneumonia that almost took him away for us, was tied to an infection that was most likely brewing in my uterus from before he was born. It would explain a lot of my preterm contractions, how crappy I could even explain why my uterus wouldn't contract after the birth. Hindsight being 20/20, it could explain a lot.

The day after J was hospitalized, I mentioned to our pedi that I'd been running fevers, felt awful and hadn't received a call back from the OB's office the day before. He agreed to talk with the OB office's oncall doctor during rounds to ask if he'd see me so I wouldn't have to leave, but the answer was no, I needed an ultrasound. I said I wasn't leaving my son. He said "if you continue to get sicker and die, you'll be leaving him for a long time. Get your butt into their office." Strong language from a laid-back guy, so I took it.

I'll never know why the OBI saw (not my own) gave me the wrong antibiotic or didn't give me methergine to make me cramp when the ultrasound several things I hadn't yet passed, and an area of my uterus through which there was no blood flow. I'll never know why she didn't seem to connect the dots between my visit and my statement that my son was in the PICU with bacterial pneumonia. Why she didn't realize that I'd pointed out to her I'd stopped bleeding before I left the hospital, when I know that wasn't normal at ALL.

What I do know is that what followed, at least in my own health care, became a comedy of errors. The wrong antibiotics or the right one given too short a time, symptoms that never fully went away, courses that ended with me feeling better but not whole, with raging symptoms to return within days of stopping the meds. Telling doctors that I didn't feel right, my uterus felt like it was burning, telling them I'd been fighting a fever for so long even though it had turned into a low grade fever.

In the midst of this, the little recovered. He came home on oxygen and stayed on it for two weeks. I spent just over three weeks of his life not able to hold him as close as I'd like, not able to just rock him, not able to put him in the sling and place his tiny body over my heart. I felt like I was forced to love him from afar, but I can say that there is no distance between us.

At the end of February, we rescheduled his circumcision. If I had it to over again, knowing what I know now, I don't think I would. Babies are circumcised early because they are too young when tiny to fight much, but I told you...he's a fighter. We didn't have his circ done at the hospital because he was a bit early and we all agreed we'd wait a bit. Then he got sick two days before he was scheduled to have it done. Then we waited for him to recover.

I made arrangments for my daughter to stay longer in school that day, thankfully, as I didn't want to have to bring her with me. My husband was supposed to come to the appointment, but was accidentally double booked and I told him I was ok with him missing it. He finally agreed he was ok with that. So when he started bleeding after and wouldn't stop, my husband wasn't there.

The doctor didn't do anything wrong, we know that from a medical standpoint as well as in general. There was a blood vessel closer to the surface than normal, and for whatever reason (there's no bleeding issue with him, in general) it wouldn't stop. Not even with direct pressure. At one point it looked like a stitch might need to be involved, but in a last ditch effort to avoid that, silver nitrate was used...a tiny, teeny amount. The bleeding stopped, we waited in the office to make sure it was ok, and finally got the all clear to go home.

He slept as I picked up my daughter, as my husband came home and finally woke for a diaper change. When the cool air hit his skin, it stiffened, and that blood vessel reopened. The sight of a soaked diaper is nothing new to a mom, but a diaper soaked with blood, so soaked you can see it from the outside of the diaper, is horrible. My husband got the dr on the phone, we applied direct pressure as instructed...but still we couldn't get the bleeding to stop. I took him to the ER and my husband stayed home to calm our daughter, as that night we had nobody else to watch her.

He lost a lot of blood that night, avoiding a blood transfusion by the smallest of margins. As our doctor sat with us, waiting for the urology consult, he prayed with me. My phone wouldn't work in that part of the hospital so I couldn't even call my husband to update him, the ER staff kept promising they would bring me a phone to use and kept forgetting, and our doctor's phone wasn't working either.

When we finally went home, when he was finally ok, I did not sleep. I not only didn't want him out of my sight, I was terrified that fully clothed and in a diaper he could bleed to death and I'd never even know it. I found a way to swaddle him and put him in his bouncy seat, then open the blanket and the front of his outfit just right so I could see the front of his diaper and open it if I needed to. I sat in the same spot all night, watching him, checking him, praying.

I was amazed at the time how many people kept telling me how well I was holding it together. The same thing was said during his pneumonia. I'm starting to think maybe I should learn to play poker.

We had a lot of follow up appointments after his circ, but everything has healed perfectly. You've never seen a mom so relieved to see her son receive his first stiff breeze, if you get my drift, and the urologist agreed without reservation that everything healed just as it should.

There's a picture of my son and I, asleep on our couch. It looks so innocent, my husband took it because he thought we looked cute. You can't know just by looking at the picture, that I was holding him because I needed to feel his chest rise and fall and just know that he was ok. You can't see that I'd ground my teeth terribly in the preceeding several days or that I'd managed to chew so hard on the insides of my cheeks when I did sleep, that I had sores on the inside of my mouth. You can't know by looking that his blood results from that day had found him just barely on the other side of the level that would require a transfusion. If you look closely, however, you can see that he is pasty pale from all the blood loss. You can see that I don't look well either.

If that picture were any less a badge of courage for both of us, I think I might burn it.

Thursday, May 29, 2008

But I kept singing.

Babies make noises. They cry, coo, gurgle, sigh, moan, fart, squeal and laugh. If they are like Baby J, the little, they do a mean pterydactyl impression. They even grunt.

The thing is, there's grunting and then there's grunting respirations. If your baby is grunting when they exhale, that's not cute, it's not a normal baby noise, it's reason to seek medical attention. Now.

In the moments after my son was born, as I started to become worried about whether he was ok, he'd started grunting. The nurse told my husband "we don't like that noise" and what she really meant was "this is not good." With some oxygen, they were able to get it to stop.

12 days later, we were not so lucky. My husband, daughter and I had a cold when the little was born. I worried so much about that, but everyone kept telling me that my breastmilk would help protect him. It didn't hurt, but it couldn't prevent a crisis either. The day had started pretty normal with the only oddity being that he was sleeping a bit more than normal...but he was 12 days old, newborns sleep a lot and he was still feeding frequently. He was sounding a bit stuffy, but we'd had him checked by the doctor a couple days prior and he was fine. I didn't like that he had a cold, but I was suctioning his nose to keep it clear and he was eating like a champ.

At around 4pm, he was sleeping in his swing and sneezed. A huge glob of green snot came out. If I had it to do all over again, I'd have called right then...but it was the end of the day, I was pretty sure we wouldn't get into the dr with an hour left to the day, and I planned to call the next morning.
As it turned out there was no need. By 9 that night I was telling my friend on the phone that he'd gone an extra two hours between feedings, and as she was on the phone with me I decided to wake him and get him interested. Nothing worked. He would wake, but he wouldn't nurse and he just felt wrong. I rubbed him, took his clothes off, put my nipple to his mouth...nothing . I let my friend go. I changed his diaper, I talked to him, I called the doctor who said give it one more hour and if he wouldn't eat, come to the ER.

At that point my husband came in and I told him what was happening. He held him for a moment and I watched as in a manner of seconds, he turned blue and started grunting. I think I will be able to see that image in my mind for the rest of my life, hear that noise, and I hope one day I will stop dreaming about it.

We started throwing together his car seat, grabbed a diaper bag, waited at our car until my MIL could get to our house to stay with our sleeping daughter. If I had it to do over again, we would have, should have, called an ambulance. I didn't know. I just...I didn't know.

He grunted the whole way to the hospital....a trip that normally takes 15-20 minutes that time of night took us less than 10. When we got to the hospital, he was skipping breaths and it was the only time I saw a triage nurse actually move quickly.

At one point, there were a dozen people touching our son - not counting us. We'd had to move out of their way, so we went from being able to try to comfort him, to touching his toe, to standing, watching, praying and crying. I remember holding onto the hat he'd worn in, that cold night, turning it over and over in my fingers, wondering if it was going to take on a grim significance.

I mentioned before that I've been surprised by how calm medical professionals can be, and I admire that trait in them...the ability to be calm even when it seems the walls are crashing down.

The thing is, I can tell you when your son crashes on the table that they lose their calm too....but I pray you never, ever see that. When the neonatologist started yelling, when a nurse started tearing up, when they brought someone in to hold our hands because they thought our son was going to die, I thought I was going to die of a broken heart right then and there.

I can tell you that fear didn't kill me, it just closed my throat so I felt like I couldn't breathe. It made my heart feel like it was going to stop beating, and while I squeezed that tiny little hat for dear life, my husband held onto my shoulder. I had perfect impressions of his hand on my shoulder for at least 8 days. The memories have not faded so quickly.

When they finally got him stabilized enough to be moved, we went up to the pediatric intensive care unit. It would be our home for the next 8 days as he fought bacterial pneumonia.

As a mom, I wanted to make it better, I wanted to comfort him, but there was nothing I could do and he was so sick that he wasn't even upset. There was a moment when our pediatrician came in to do a spinal tap to rule out meningitis. He and the nurse showed us the position he needed to be in, explained the importance of helping hold him still, etc. I don't sing in front of anyone but my kids, but this was important and I didn't want him to get upset and cause further harm.

I sang "You are my sunshine" in a wavering voice as my son had a needle pushed into his back and didn't move, didn't flinch, didn't cry. I once thought seeing my child in pain and upset was the worst thing I'd ever see. Seeing him fail to react to a test I'm told is incredibly painful was worse than if he'd screamed. When I got to the part about empty arms, I cried for all of us. But I kept singing.

They asked me many times "how are you doing, mom?" At the time, I thought it was just because of the stress of the situation. I didn't know I was white as a sheet, didn't know I was running a high fever, didn't know my body was fighting the same bacterial infection that my son was fighting. I just knew that my son was sick and my husband was upset too, and he was very much the forgotten guy in the room.

Before it was over, a lot would happen in that tiny room. The little would get worse, better, worse again before he would heal. I'd declare I wasn't leaving him for anything only to be told if I didn't leave to seek help for myself, I might die. My marriage would suffer a serious and almost crushing blow. I'd find out who my real friends were and I'd learn that when the going gets tough I have to be reminded to breathe. Ultimately, the little would spend 5 days on PICU status, an additional 3 hospitalized and 2 weeks on oxygen at home. I'd also acquire the memories for some serious flashbacks that still haunt me, asleep and awake.

Recently, he had his four month shots and on the way home I heard that familiar grunting. I pulled over to the side of the road and watched him breathe. It passed quickly, without repeat....until a few days ago, the reason for my post about breathing.

We were at a store, the little in his carrier in big part of a shopping cart, when he started grunting, turning blue around his mouth, breathing quickly, then skipping breaths. He did it twice that day and once the next. We don't know why. His chest xray was clear, but I am in a hypervigilance mode after finally reaching the point where I was less worried about his breathing, finally relaxing a bit.

I don't know what's going on, I don't understand it, and reflux has been mentioned as a possibility...but I'm just not sure. All I can do for now is watch, ask lots of questions, and focus on breathing. For all of us.

Wednesday, May 28, 2008


Heavenly Father, I post this prayer in hopes that others will join me. Please help my son remember to breathe. In, out, repeat. I don't know why this is happening, I don't understand, but if you help me remind him to breathe, I'll do my best to breathe myself. We'll remind each other.

I feel like the walls are closing in, but I'll be ok if he is. I swear it. I need him to be ok. He has to be ok. He's got a big destiny, remember?

Friday, May 23, 2008

And you can't make me.

Skipping ahead again.

It appears I'm hysterectomy bound, though we're not yet sure about the timing, and I'm scared.

I'm not scared of the anesthesia, the complications, the potential that any surgery could end poorly or worse...with a fatality. Nope. Yes, those things are all worth considering but I figure I can't do anything about them really and in that way I am able to let them go.

No, what bothers me is the question of whether I'll be allowed to keep my son with me in the hospital during the recovery period. That probably sounds stupid. Still, it doesn't change the fact that I know nursing will be much easier on me than pumping during the couple of days I'd have to stay in the hospital and I know that I could make it work to have him with me, if we do this soon.

I know it's likely going to be suggested that I not have him with me. That I let someone else watch him for a couple of days. The thing is, I just can't. I won't. And if it comes down to it, I'd take waiting longer with this thing they are still calling a uterus than give in on not being able to nurse him for a few days.

After everything we've been through, I don't want him out of my sight for that long, I don't want to go without nursing that long. I just don't want to.

Tuesday, May 20, 2008

Mama Trauma Drama Part 3

We're told to listen to our bodies, to trust that instinct that whispers, that throws pebbles at our mental windows and then finally screams "Something is wrong here!" We're told to listen, but we're not really told how to act once we've heard the message.

My pregnancy thus far had seemed like one big false alarm. A series of scary events ultimately turning out fine...bleeding, contractions, falls, gall bladder attack, a kidney stone....all of it turning out ok in the end. Sure I was on two medications to prevent contractions that weren't working and I had more trips to the hospital than seemed possible, but we were okay.

Then the wheels started coming off the cart. I'd been testing my blood sugar and the numbers got increasingly higher. My metformin dose (normally prescribed for PCOS) was raised. The contractions continued. Each time I went to the hospital I was asked if I'd been given steroids for the baby, each time I said no and they still didn't give them to me. (What was THAT about, by the way? I should have insisted they go ahead and do it, I suppose)

I reached a point where our biggest worry changed from what we'd do if baby came too early, to what we'd do if my water broke at home and we couldn't get to the hospital fast enough. That turned out fine, luckily, but there were things we didn't worry about that really blindsided us.

The last thing my doctor had said before he left the room that day was not to have the baby in the tub. "we're not equipped for that." We all laughed. I felt like the hurry up and wait queen having had so many false alarms. Now we knew it was the real deal we still didn't think it was going to go that fast....after all, I'd already fooled my doula. She didn't think I'd make it to when my doctor came on shift. That's me and the little, I guess, surprising people at every turn.

I walked to the tub, got in, and immediately had a brutal contraction. I changed position in hopes for a bit of relief (went to hands and knees) only to immediately have another bone wrenching contraction. My body started pushing, and all control was lost. My doula said "are you pushing?" I told her yes, I couldn't help it, and just as she was about to pull the call cord the nurse happened to come back in. There were frantic calls of "get back to the bed" and "we need help in here" and "we're having a baby!"

The doctor came running in, and I said "I need to push." He laughed and said, "Go ahead." I didn't know until my husband told me later that our son's head was already crowning at that point. It was only a few pushes later and he was out, all happening so fast there was no time for perineal massage, a pudendal block had I wanted it...quick and dirty was the name of the game this labor.

Then it all went south.

The cord was around our son's neck, so while he was immediately placed on my stomach he didn't stay there long. They said it was to clean him up, and I had heard him cry, but they were very quiet in that corner of the room as they stimulated him, as they gave him a bit of oxygen, as they encouraged him to breathe.

I remember looking at my OB and asking "Is he ok?" several times without him seeming to hear me, finally saying "Look at me! I want to know if my son is ok!" When his eyes met mine, I saw fear but could tell he was thrown by my question. It didn't immediately register that he was worried about me, not the little.

I liked my OB, really really liked him as a person, but one of my irritations with him had been that throughout all of the excitement of my pregnancy he seemed so calm, so unfazed by what was happening. He cared, but his lack of intensity about it sort of pissed me off.

In that moment, I realized that seeing him worry meant something was very wrong. I saw a bead of sweat roll down his cheek and realized I was shaking and cold.

Monday, May 19, 2008

Gotta love it.

"Look Mommy, I'm Cinderella," she said as we were leaving to drive to her school. She'd insisted that the crown was what she wanted to take for show and tell. Who am I to judge?

At that moment, however, she was looking especially regal...more used to the concept than Cinderella would be. "Hmmm," I said, "you look more like Princess Grace to me."

"Nope. I'm Cinderella, you're Tinkerbell and DADDY is Princess Grace."

You can't make this stuff up.

Thursday, May 15, 2008


Do you think styling my daughter's hair while I'm going to the bathroom and she's brushing her teeth is the type of thing that will scar her for life?

Maybe I should relabel the kids' education account 'therapy' and just leave it at that.

Then again, maybe I'll just tell her it's her own fault for coming in and out during my one moment of solitude.

Wednesday, May 14, 2008

What do you need to say?

Posts to come about why Mother's Day is hard for me to discuss, the rest of the Mama Trauma Drama and a question about whether my multitasking might scar my daughter for life.

For now, I'm off to play this video again because my daughter loves when the song comes on and yells "Sing it, mom! Sing it!" then says "please sing it!!!" and when it isn't on she requests it by name:

"Samwiches need to say."

My stars, I love that girl.