Day 138 - 146: Happier days in the NICU

He had just needed to get over the last hump. He was so close. I knew that.

Even so, I was surprised at how fast things clicked into place. I was still seeking counseling for post partum anxiety or PTSD, and my son was leaving that whole world so very quickly behind him.  I said it was like he was running his own couch-to-5k, surprising all of us by his speedy progress. Every day he added to his list of accomplishments, and there were whispers of a homecoming.  He was going to graduate.  I stopped posting as much on his care page (where I typically put all the most depressing stuff) and I started bragging about my cute baby on social media sites instead.

Some serious guy time.

When JAM's dad got his PhD, I was glad. When I got my MA, I was tired. When Jonathan got his embroidered cap-and-gown from my sister, declaring him a NICU graduate, I nearly cried. I put it aside, full of pride. He was GOING to make it. And he would wear this cap-and-gown. I put it in his drawer at the NICU (you all can see it on the anniversary of his graduation day - it's less than ten days away!) Then I picked him up, just like that, just picked him out of his open crib and rocked him in my arms at bedside. I didn't even need to ask a nurse, I just needed to be careful of the monitor wires.  But even that didn't concern me. I'd been there long enough that I knew how to reattach them if they got pulled off.

He held his own heat. His monitor barely alarmed. He looked up at me and knew me. I called the nurse in to weigh him. Then I sat down in the rocking chair and took out a nipple shield. Maybe he'd take a little milk from me this time. We'd know if the scale went up when we weighed him after nursing. Sometimes he got a few mls on his own.  And when he didn't, we'd feed it through the NG tube while he was in my arms, so he'd "get the idea."  Perhaps my pumping days would go away after his NICU days ended.  I sang to him, I tucked him in, I wasn't afraid any more.

Some of what Jonathan accomplished in his fifth month of life (before he was a month out from his due date):

Only an NG tube, with a "so I can get my milk" mustache (of tape)

• He was up to 5.75 pounds - and then a week later six and a half pounds. That's HUGE. My friend said "That's like the size of a full-term baby! ... A small full-term baby, but still, I've had friends who had babies that size."  'Bout time. He was only 4.5 months old.
• He held his head up and moved it from side to side while on his tummy.
• He was eating about 16 of the 50 mls (or about half an ounce) of food by bottle. His occupational therapist said he had a better suck than most preemies. I blamed his love of his pacifier.  He often was breathing too fast to take a bottle by mouth, though, so there was talk of having us trained in NG tube placement so we could thread the plastic down his nose to his stomach ourselves at home and insure he got the calories he needed.  Most NICU babies have to eat all their food by mouth for a few days before they're sent home. The doctors were willing to let us just take him. We weren't going to complain.  
• (Note: While most third trimester preemies have to pass a feeding challenge -- eat all their food by mouth for a few days -- before they're allowed to go home, many micro-preemies come home on some hospital equipment, and many of them depend on that equipment for a year or more. We'd assumed he'd come home on oxygen, and probably a feeding tube too. An NG tube only was WAAAAY easier than oxygen plus a tube, so we were thrilled.)
• He passed a hearing test
• He impressed a physical therapist (although he was a little slow on some of the reflexes)
• He developed an incisional hernia where the gut surgery had been.  It was cosmetic (and kinda cool when his bowels rippled) at the moment, but would need to be monitored and eventually fixed. That meant (sigh) another surgery.
• Once his central line incision healed, he got to take his FIRST EVER BATH. Imagine waiting four or five months for a bath.

P.S. It is with bittersweet joy that I write this post. From here on out the pictures and updates will be joyful,and I celebrate that. At the same time, there's a little 3.5 pound baby boy named Andrew who was due to be born today. He's three months old. I want him to have the same happy ending. His twin has already passed. Andrew has just been diagnosed with PIE - emphysema in infants. He is on a vent and his oxygen is at 100%. His tummy is stretched and bloated. He's off all feeds. Things are looking bleak.  My son hit a critical point on his due date too (remember? that's when I cracked), and I remember how it was so hard to see. While I celebrate how good December was for us last year, I hurt for him, and I hurt for his parents. We had hoped they were nearing the end of their journey. Dear baby Andrew, we're walking with you over here. You are in our prayers today!

Day 123-137: PTSD & PPA -- an ode to Medievalists.

[I've sung odes to many specialists through this blog. Social workers, NICU support volunteers, OBGYNS, Early Intervention PTs/OTs, and scattered throughout this blog I've praised respiratory therapists, NICU nurses, MFM (maternal fetal medicine) doctors, and JAM's great team of neonatologists.  I dedicate this post to another sort of doctor: the medievalist. I know about a half a dozen of you, and I think you're all amazing. Last year at this time, y'all were just the sort of doctor I needed. And while you can't supply medical-grade caffeine, JAM didn't & doesn't mind hanging out with you either.]

A year ago Jonathan was alternating between doing fairly well and facing another stumbling block. He started breathing fast after his bout of pneumonia, but he also started taking bottles by mouth -- as long as he wasn't breathing too fast -- and we were excited to watch his progress. He ate his first bottle (14  ml) entirely by mouth at four months old. He grew by leaps and bounds and by the end of November he had outgrown preemie clothes and was in newborn clothes most days. While he was under 5 pounds on his due date, a year ago today he was an adjusted age of 2.5 weeks and weighed five pounds and 13 ounces.

An MRI of his brain showed only one small resolved hemorrhage that had healed some time before and hadn't been present at birth. For long term cerebral issues, this was huge and great news. During tummy time over the last week of November, Jonathan started kicking his legs. Steve said he was trying to escape the NICU.

And then, on November 29, he went down for his last NICU surgery. A central line removal. That should be easy. It was usually done with local anesthetic, but (despite protests from his dad and the nurse) they put him under general anesthetic for it because he'd had the central line for so long. Like the previous few surgeries, he did not respond well to the anesthetic. His lungs and gut did not bounce back well from the surgery, and within the day he was taken off food and put back on CPAP. Again. He needed the breathing support for a few more days before he was able to go back to room air.

=====================================
On the home front, we were exhausted. We knew the end was in sight, but that didn't make the race any easier. We tried to maintain some sort of normal. We had my sister over for Thanksgiving, and we trimmed the tree that weekend as usual. We had this dream that maybe this would be the last holiday in the hospital.

I mentioned a few posts ago that I had crashed after his second to last surgery. To turn a corner and nearly see the end -- and then have him go back into critical condition -- it was harder than I thought it would be.

Were you ever super busy in college, so much so that you skimped on sleep to power through getting all your projects done?  Then, not surprisingly, as soon as it was all over, you got a terrible cold. It was like that, only then we found out, sick and sniffling, that it's NOT really over afterall and we had another major hurdle to overcome.

I had sought out support and had seen my OBGYN. She'd prescribed anti-anxiety drugs, but as they would go into the breast milk and complicate the health story of an already medically complex infant, I decided to save them until I found they were absolutely necessary. She agreed to this plan only after I lined up what steps I would take first: trips to see a counselor/psychologist, and extra exercise to help release the tension.  She was sympathetic and supportive. She said that even she had had post-partum issues with some of her children, and reminded me that it was a hormone imbalance thing, and didn't speak to my strength or weakness. The NICU experience makes all that even worse, she said, so treat this like you would any other illness. In other words, don't try to power-through, treat it.

The counselor/therapist/psychologist appointment happened on the same day as Jonathan's central line removal. It was only minimally helpful. And that's an optimistic assessment.

She asked me to explain what brought me in. She crossed her black nylon legs and turned her wheeled office chair to face me. I was folded into a leather armchair in the corner with my drug of choice (an americano) next to me on the windowsill. As I talked I stared at the colorful scarf draped over her simple and slimming dress or out the window at the cold dead branches. She was the woman with a solution to everything, highly competent and intelligent. I was in my own winter of life, no signs of flourishing. She could handle my story, I thought. I looked at her qualifications, posted in frames on the wall. I'm sure she'd heard much worse.  I checked my phone to see if Steve had texted me about Jonathan's surgery, and seeing nothing, I set it aside and set myself to my own bit of surgery.

I explained, I thought, in a very level voice without too much drama -- just the facts -- all that had happened in our family in the past five months. I consulted my coffee cup and turned the paper cup in my hands whenever it got a little difficult to explain. I tried not to make it too gory or overblown. I didn't even mention the blood transfusions or the time he turned grey in my arms. Just his early birth, the surgeries, the hospital stay. Just the simple stuff. It was, after all, our first meeting. Despite my down-play of the situation, she looked sympathetic and shocked.

She then explained to me that I was like a fire alarm that had been pulled. I was constantly alarming, even about small things. She said I should try yoga.  She passed me a brochure about post traumatic stress and anxiety.

Constantly alarming? Overreacting? She hit a nerve, and not the right one. I just needed to relax? I left confused. I had told her I was having flashbacks, but I didn't think I was a pulled alarm. So, yoga and visualizing were the answer, then?  I told her I'd be running instead. I could handle running. I didn't want at all to go deep into myself.

I walked out the door of the psychologist's office a bit disheartened. I made the next appointment with her, but wasn't sure how much it would help. I was NOT a fire alarm.

I hadn't even cleared the waiting room when my phone rang. It was Mimi's daycare. "Your daughter has had a terrible accident" they said. 

"Oh no, what hospital?" I thought.

"You'll need to bring another pair of pants to school" they finished.

So maybe I over-react a little. (Or maybe I just know how accident prone my Mimi can be) But a fire alarm?  Blaring lights? Not all the time.

I dumped my paper cup on the way off the elevator. I climbed into my car to head home for new underwear for Mimi. Since the professional's analogy was so bad, I tried to think up a better one. The psychologist had told me to visualize, so I visualized. "There" I mentally stabbed at her, "I'm doing what you told me to do!"

I thought of myself not as alarming unnecessarily, but instead as a cool glacial brook. Yes, that's what I was. That was my natural state. But then I'd accidentally wandered through hot springs. It's where my path had taken me. I knew I could keep flowing, and I'd find the glacier again, I just didn't want to end up evaporating in steam as I tried to get through this piece of the mountain.

Sounded good.

Do you remember Christina from the day things went wrong? and the oxytocin rules? She'd been through most of this drama with me. I told her about the appointment and my made-up analogy, and while agreeing I wasn't a fire alarm, she told me my analogy was bad.

She reminded me that cool streams come FROM glaciers. They don't flow TO glaciers. So I guess I'd never find the cool ice again.

"I meant I would flow through another glacier. I can do that, right?" I replied, "And get more cool water that way? Please tell me it is so, because I'm tired of hot sulfur smells."  I dared her to come up with something better.

And so she did.

"I think of you more as the youngish tree with deep roots that's planted between the street and the sidewalk and is currently in the middle of massive street construction, stubbornly hanging on and waiting for the street to get quiet and pleasant again. And in the meantime, you're making people feel better just by being there," she said.

With friends like these, who needed psychologists? You are strong, Christina reminded me. Strong and capable. You can get through this without being uprooted.

I asked Christina if she could perhaps prescribe me some drugs, too, being a doctor (PhD) and all.  So she took out her black bag of doctor tools. She is a medievalist, remember?  She discussed with me the imbalance of my humours and how to deal with my excess of black bile from the cold autumnal weather. She encouraged me to put on music and dance and eat warm, moist, succulent, easy-to-digest foods.

My doctor friend tells me I'm a solid young sappling who needs to get on her groove and indulge in comfort foods. I can handle this.

Seriously, why didn't I seek out Dr. Christina earlier?!?

Moral: Sometimes medievalists are better than psychologists for what ails you.
Also, I hear sometimes ale ain't too bad for what ails you, either.

Day 122 (Nov 16) - Hearing the music

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

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

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

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

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

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

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

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

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

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

November 9-12, 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Prematurity Awareness Month
Fact of the Day

Days 15-30 (smile)

Q: What causes a baby to be born prematurely? What can I do to prevent a preterm birth?

First, a note. I was going to take the last half of prematurity awareness month to tackle some of the causes of preterm birth, one per day, and also point to some tips for preventing preterm birth.  But I'm rolling them all into one post for two reasons:

1. Blogging has proved to be a lower priority to me than other life events. You'll see that my FODs slowly die off and more and more days are skipped as the month goes on. I give no excuses, except that I think I was right to put this as a lower priority. The twenty or so of you that faithfully read this blog probably didn't care much. If I do this again next year, I'm writing all the posts in one go so that I know I'll post them daily. 

2. I realized I'm not qualified. I don't understand preeclampsia or premature rupture of membranes. I don't even know why I delivered early. I had a perfect pregnancy up until just shy of 21 weeks. My chart says "incompetent cervix" but the doctor admitted that he wasn't sure if it was IC or preterm labor. And my cervix didn't really thin until the very end. Not a perfect picture of either. And I had zero risk factors for early delivery, so I'm not sure I could have prevented it. Live a less stressful life, maybe. But that's hard to do.

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

A: Sometimes (like with me) we don't know why a baby is born early. The mother is healthy and (I'd like to think) has done everything right. You're at higher risk if:

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

To prevent preterm birth:

I found a fantastic website here that talks about what you can do to stay healthy while pregnant, and what you can do to avoid having a preterm birth. It explains why each of the tips below is important. To summarize:

Be healthy. Don't smoke or drink or do drugs. Take your prenatal vitamins. Eat well (small snacks often are good) but gain weight at an appropriate rate - not too little or too fast. Drink water, brush and floss your teeth and see your dentist (FOR REAL! It's for the health of your baby), use the restroom when you have to (don't hold it), and talk to your doctor if you're worried.

PAM FOD #14: World Prematurity Awareness Day

Prematurity Awareness Month
Fact of the Day
Day 14

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

JAM last year, finally off breathing support after
his second to last NICU surgery.

I stand with those who have lost a child because they were born too soon, and I mourn with you.

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

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

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

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

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

The second to last NICU surgery

I'm hungry, momma.

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

What do I hear? Is that impending surgery?

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

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

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

Written Nov 7, 2012 1:28pm by Laura M

Jonathan is currently in surgery...

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

Who needs IVs?

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

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

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

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

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

Steve is home sick today.

Thank you for your prayers!

I'll be adding photos soon.

Written Nov 7, 2012 3:28pm by Laura M

J came out of surgery ok, but with a severely elevated heart rate (220bpm). 

Written Nov 8, 2012 1:53am by Laura M

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

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

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

================

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

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

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