Thursday, July 31, 2008

Quick update

I have a big post planned for later, but just wanted to check in real quickly so no one worried.

Last night:
+70 grams.
Fulltime canula, no more CPAP.

I just got off the phone. We're graduating again- the lower level NICU. Other side of the hospital. Probably in a half hour or so.

Holy moly.

I'll be in the corner breathing into a paper bag. Changes all around.


Wednesday, July 30, 2008

Good stuff

Well, he gained another 40 grams last night. They do think he's retaining a little bit of water, but he's not super puffy or anything. His weight gain is real.

He did have another brady- of course just as I was walking out the door. We'd done his midnight cares, I got him settled in and was sleeping soundly. I stepped around the corner just getting some bottles and the alarm went off. I told him that was a very bad way to say goodnight. I asked when they thought he might actually outgrow that and they couldn't really answer. He'll be 35w tomorrow. She says he's still little and it's not unexpected.

They upped his cannula time again. He's on 8 hours of cannula and 4 hours of CPAP. Not sure if that will change today or not, they haven't rounded yet.

The BIG news of last night was that they were going to start trying to feed him today. I asked to be there and they said they'd call me and try to work it out. But when I called to check on him this morning, the OT was already there and had given him a drop of milk already. Not in a bottle, but on his lips. I'm not going to lie and say I'm not really, really, really disappointed that I didn't get to be there for it. But he did well, so I'm trying to count that blessing. She said he did quite well, actually. She doesn't want to try nippling because he's still on a high liter flow (a lot of air) and it would likely be hard for him to swallow much with all that air coming in. But that he definitely is developmentally where they like to see for nippling.

She gave me a few things to work on. She wants me to try to get him down around my nipple when we kangaroo. He's been rooting a lot, so he'll probably enjoy that. I'm a little nervous. Good nervous, though. This will definitely be new.

In other good news, my DOG DOES NOT HAVE CANCER! Now, she said that technically it could probably fall under the category of cancer, but the 2 kinds that he has (each tumor was a different type) have NEVER been known to metastise. The smaller one was a type that isn't even known to recur, so it's good. The larger one could grow, but she said that the mitotic rate (the rate at which is grows) was "low." So we are to keep an eye on the area. She'd like to check it every 3 months. Since we're frequent fliers at the vet, basically, any time we're in, they're going to take a picture of it and just make sure it's not changing. If it were to regrow, they'll go ahead and do another surgery. He'd probably have to have at least one tooth pulled to get the whole thing out, but we'd do it if we needed.


Now we need to get to my husband's scope on the 22nd and if that is all clear, we'll have seemingly escaped the worst of our curse.

Keep the moose coming!


Tuesday, July 29, 2008


+40 grams. 3lb 1oz

It's very exciting.
My beloved Dr. C sort of dampened it a bit, though. I asked him if he was gaining too much too fast and he took me to show me Robbie's growth chart. I'd give you a dramatic reenactment but I'm not sure I can spare the space between the bottom of normal and Robbie's line. Essentially he started out really low, just below 10%. and then it got worse. Can you hear my sighing?

He was trying to show me that a big burst of weight is good, but mostly it just depressed me. I know that he's moving in the right direction, but it sure sucked to see how far behind he is right there in black & white.

His breathing is going well. I spoke to his nurse this morning and they're going to see about going to straight cannula today. He's done really well on it, so hopefully he can be done with the CPAP. He hadn't had a brady in a few days, though she said he did have one this morning. She said his mask was off his face and only required a little stimulation, so hopefully it was a fluke.

His nurse today isn't one I know. I hate that. She sounded lovely on the phone, but until you see them in action, you just never know. And of course, I won't even get to the hospital until it's almost time for her to leave. Trust is hard when it comes to strangers taking care of your helpless baby.

Off to work...


Monday, July 28, 2008


He gained again. Another 50 grams. The nurse weighed him at least 3 times. The charge nurse came over to look at him. He's not swollen. He'd pooped relatively recently, peed plenty, his lungs are clear. They can't seem to find any fluid to blame it on. He's now teetering on the edge of three pounds.

We'll see what happens again tonight.

We had our favorite nurse over the weekend. If she hadn't already been well loved, she certainly solidified it now. I almost embarrassed myself because as she said goodnight last night, I actually said "I love you." to her. In a totally sincere way. Because I do. I love that she loves my kid. She requested him this weekend. She works part time and does things like PIC lines and such, so she can't really primary, but she's happy to have Robbie whenever she can. And she's so incredibly wonderful. She pays very close attention to Robbie.

Actually, she pays attention to all babies. I came in yesterday and as I settled in, the nurse of the other babies next to Robbie was coming back from break. Apparently while that nurse was at lunch, our nurse had drawn up her labs and done a few things for the babies. The other nurse was stunned and thanked her profusely. Our nurse just shrugged. She'd had a free minute.

I personally watched her respond to another baby having a pretty bad brady episode. Didn't matter that it wasn't her kid and the other nurse wasn't busy. She was close, she handled it.

That makes me feel much more comfortable. I didn't feel like I had to rush into the hospital because I knew he was getting the best care.

In that vein, yesterday when he was having his 4 hours of cannula in the morning, he was doing really well. So she went to the NP and asked if he could have longer. He'd gone all 4 hours w/o desaturating even once. They agreed. So as of now, he gets 8 hours on cannula, 8 hours on CPAP. I'm really hoping that by the end of the week, we might shake the CPAP habit. I know it would make Robbie much happier. He cries when they put it back on. It's the saddest thing. I know we have to do what is best for his health, but man, I'll be glad when the best thing for his health is just the cannula.

So, for now, Robbie is doing well. I'm not going to lie. It almost makes me more nervous because we've ridden this roller coaster long enough to know it's not over. The next drop could be an hour or a day away. But for now, we're climbing.


Sunday, July 27, 2008

Pictures! And a video!

Okay. The video is really short and really boring because there were so many people around and I felt a bit self conscious narrating. But the lights were on and you could see him, so you can get a quick view of Robbie, the surrounding area, and a little wave from David.

And some photos:

Just chillin':

A bright baby burrito!

All clean and fresh after a bath:

Daddy gets to cradle hold for the first time:

Eight weeks old!

Wow. Those moose are powerful.

+85 grams.

I made her do it twice. I said there was no way that was real. It had to be fluid. The nurse laughed and said "Fluid from WHAT?" And we'd just pulled off a poop filled diaper and he peed on his way out of the isolette. And it was the same scale as yesterday. I'm still expecting him to lose a little tomorrow. Their goal is 30 grams. We nearly tripled that? I don't think so. The parents of the baby next to us were laughing at my disbelief, but still.

Right now, he's listed at 2lb 13.9oz.

Everything else is pretty steady. They upped his feeding volume a tiny bit again, and tomorrow they're going to add a bit more HMF. But that was about it. He was on his cannula twice today and did fine.


I ran into a dad I'm friendly with and hadn't seen. They'd graduated to Special Care but are back. The baby has an RVT- Renal Vein Thrombosis. That's caused a cascade of other problems so they could use a prayer or two.

I'm pretty sure I posted about him, though I can't seem to find the post. He was the guy who came in looking terrified and I asked how big his baby was. When he told me the baby was 2lb 10oz, I commented how big that way. He thought I was nutty until he saw how tiny Robbie was and obviously felt better.


David and I had a rather large fight today.
It started because my family is in town. That should probably be enough right there, but it continued.

I asked them if they wanted to have dinner and when. They couldn't decide what they were doing. I explained that Robbie gets 4 hours at a time off the CPAP and that's when he should be held. If they couldn't tell me if/when they wanted to eat, I was going to the hospital and holding my son because I wasn't putting Robbie off for a "maybe." My dad, being a reasonable man, agreed with that.

David thought that was rude. He doesn't think we should put off our "whole life" to sit at the hospital 24/7.

At first I was amused that he was so offended at NOT having dinner with MY family. But eventually, it boiled into essentially this:

David thinks I'm too obsessed with being at the hospital and too negative.

I think David hasn't made enough adjustments to be at the hospital and is in denial about how serious the situation is.

We're probably both right. And wrong.

David say that I have no hope. I said that I do, but he says that I don't. That I freak out over everything. His penis is bleeding, I think he has cancer and is going to die. I have a growth in my brain, I have cancer and am going to die. The dog has a growth in his mouth, he has cancer and is going to die. Robbie has too many visitors, he's going to get an infection and die.

Honestly, there's a lot of truth in that. I'm an anxious mess. Things keep going wrong and I fear the worst. Part of it is my nature in general, and part of it is that the last few months have honestly shaken me. I personally think that's understandable. But perhaps I could work on hoping for the best instead of fearing for the worst a bit more.

On the other hand, I really think he's in denial. He actually still thinks we could have a welcome home party for Robbie when he gets out of the hospital. No amount of explanation from me about germs, RSV & crappy immune systems seems to convince him. And being David, he twisted my words into saying his family can't visit. That isn't true. His immediate family can visit. So can mine. They have. But no way in HELL are we going to have a party of people in the house. I'd take Robbie and stay in a hotel first.

I'm going to have to get a doctor and/or nurse to explain to him that I'm not being paranoid. He thinks this is one of my points of paranoia.

We argued about housework. Now, spouses have argued about housework for all the ages. But our argument is a bit different. I say to leave it. WHO CARES IF THE FLOORS GET SWEPT? He insists it's still important. He'll give up seeing Robbie for an entire day to stay home and clean the house. He's not asking me to do the same, he's perfectly willing to do it himself. I just think it doesn't need to be done.

Yes- the basics are required. We need clean laundry & the cat boxes have to be cleaned. The dishes should be washed. But really, beyond that.. It can rot. I really don't care. He says it would bother him if it wasn't done.

He says I ignore him. And he's right. Between work, travel time, the hospital and pumping, plus trying to sleep 5 or 6 hours, I just don't have time. I feel like Robbie needs me more than he does.

I definitely don't have this wife/mom thing figured out yet.

Of course, at one point, he had the nerve to complain that he has trouble sitting in the NICU (he spends about 2 hours a day there after work) because he gets "so tired."

He still manages to stay up til 1am every night playing his stupid video game. He says that having a baby doesn't mean he doesn't get to do anything fun or see his friends. I told him that I felt like NOTHING changed for him. That's an overstatement, of course, but I do feel like he thinks that life can continue on just the same as before and it can't. It couldn't have even if Robbie had been full term and healthy. It certainly can't now.

In the end, we both apologized and discussed a schedule. I don't think that either of us really thinks we're wrong. Probably because we're both actually right. But hopefully we can work together to muddle through the next few months.

Oh.. and in an amusing tidbit, this argument occurred on the way to the hospital. It continued as we walked through the parking garage and into the hospital. We stopped in a quiet hallway to sort of finish it up and when we turned the corner to continue to the NICU, I found a janitor in a turban evesdropping without shame. He didn't even bother to try to look busy as we walked by. I hope he enjoyed the drama. I didn't even feel embarrassed. We weren't yelling or being nasty. And frankly, we're under enough stress that an argument every couple of months seems pretty understandable.

Anyway, as of right now, we're okay. In a couple of months, I'll be on a leave of absence from work and Robbie will be home and I'll get to see my husband once in a while.

Tomorrow- PICTURES!


Saturday, July 26, 2008


+15 grams.
Send more moose. Glad Canada has a lot of 'em.

Robbie's night nurse's name is Toika. I can't decide if I love that or not. The nurse that goes with it seems pretty nice, though, so I think I'll lean towards love.

I've decided that I really like people. No really.

I mean, I hate PEOPLE, but you know, individually, I really like people.

I really like to know their stories. Old people, young people, everyone in between.

Even people I don't really like seem to have a story.

I really like to hear them.

I was thinking about it because a set of twins in the NICU moved to special care yesterday. They were born not very long after Robbie and not much bigger. Their parents are.. to be frank..... older.

I'm guessing their mom is close to 50, but their dad is probably well into his 60's.

I was intrigued when I saw them at first. I just REALLY wanted to know their story. I still do, but I'm not nearly ballsy enough to ask. Truly, it's none of my business. But I'm curious. Did they marry late and decide to have kids? Do they have older kids and wanted one more? Were they totally surprised? Fertility helped? If so- who was their RE? I mean. I'm infertile. I NEED to KNOW. Come ooooon..

Anyway, they're really lovely people. We started chatting because there was a bit of a traffic jam one day and I was standing next to them kangarooing. We've been friendly every since.

They asked one of the nurses to let me know they'd been moved to the other NICU. I got the message today. I think I'll send them a note and give them my information. Even more than I want to know THEIR story, I want to keep up with the boys.

I feel so vested in the babies around us. Lots of them are graduating.

The baby with the heart murmur went home. I miss her dad. He was a lively one. He quit his job after his daughter was born. He'd apparently taken a week off and when he went back to work his boss (after having visited them in the hospital and seen both her smallness & scary medical situation) pulled him aside and said "we're opening a new location. We need you to be here more."

The dad's response was "You know what you need?"

Boss said "what?"

Dad said "My key."

"I'm sorry?" Boss replied.

"You need my key. I quit."

It's become my mantra when I'm angry. Any time someone does something that annoys me, I reply "You know what you need? My key! I quit!" I love it. Ballsy people make me giggle.

Of course, the twins are on the other side of the hospital now. So is a baby that was Robbie's "partner" (Paired up for nursing care) for a while. He started out not doing so well, he was extubated the day after Robbie was and a few days later, he graduated to the other NICU.

I feel so happy that they're doing well and moving forward, but also a bit left behind. I want Robbie to be doing as well.

Of course, I also see where we've come from. The baby next to Robbie right now was a 26 weeker born 2 weeks after him. His parents are also friendly. I like them because they're just as bitchy and over-involved as me. They're at the same point Robbie was 2 weeks ago. Lots of As & Bs, fearing the ventilator is coming back to them.

I've tried to be encouraging. And he had a better day today. So hopefully he's headed in the right direction.

Of course, there's Robbie's girlfriend. I adore both her parents and her grandma. Her grandma came to find me today. Since I've gone back to work, we keep different hours, so I hadn't seen her in about 2 weeks. It felt like a year.

All these new friends. I care about all of them. I want to know their stories and follow them and when our kids are all big and strong and driving us crazy, for us to have a get together and compare pictures of how tiny they were.

I'm a sap. I know.

I feel the same way about the stories I've found online. People comment on my blog and I follow their links and check their blogs daily. Sometimes I don't have the energy to comment (I'm a hypocrite, I know.) but I smile at chubby cheeks and pray for scary times.

This whole experience has left me enriched. As emotionally depleted as I feel sometimes from the worry and anxiety, I've also found a lot of love & compassion- both to and from me.


Friday, July 25, 2008



Don't say it too loud. You'll scare it away.

We might need more moose.

They added HMF (Human Milk Fortifier) back to his breastmilk today. I guess they figured he has diarrhea no matter what they do anyway, let's see what happens. It was quite runny tonight, but I can't say it was any worse than it was, so we'll see what they decide tomorrow. They're also going to do another stool sample to see if the bacteria issue is better, worse or the same. These poop issues are difficult.

They let him have 4 hours on the cannula today and are saying that maybe tomorrow they might let him do that twice.

Our kangaroo was lovely. I actually napped for probably 20 minutes or so. Granted, I had to open my eyes every 4 minutes to make sure the alarms I was hearing weren't his, but still.

He was so adorable when we first got him out. He was rooting like you wouldn't believe. At one point he ended up sucking on my chest. You could just see him thinking "there HAS to be a nipple here somewhere!"

If he could gain some weight and keep his breathing under control, he could probably start to nipple soon. You can tell he's definitely getting there developmentally. He'll suck the hell out of his paci and like I said, the rooting is picking up. The nurse told me today that I could let him rub and lick all he wanted. So long as he didn't latch on, it was fine.

What surprised me was the overwhelming urge *I* felt to nurse him. My boobs weren't aching but my heart was. I just wanted to supply it for him. To connect that way. It was powerful.

I just love being his mom so much it's indescribable.

Thursday, July 24, 2008


Well, he gained 5 grams last night. Not exactly the 30 they want but at this point, upward is good.

He's still having loose stools since we switched from the NJ to the NG but they're a little better than they were, so who knows.

They added a wedged under his isolette (which was already head elevated, of course) hoping that would help with his spitting up and so far, it seems to have. Keep your fingers crossed.

His breathing is still pretty good.

He's 34 weeks gestation today. This was the point they'd have taken him if my body could have held out. What a difference 7 1/2 weeks could have made.

But we play the hand we were dealt.

We kangarooed last night facing a different direction. Instead of facing away from everyone, we were facing towards them. Several nurses came by to coo over him and everyone kept saying "He looks so good!"

He really does look pink and healthy and adorable. If he could just GROW.

In any case, I'm feeling a bit better. I pretty much didn't eat yesterday. I had an activia yogurt in the afternoon. We'll try a little bit more food today and see how it goes.

I appreciate everyone's insights into my side/back/whatever pain. At this point, I'm willing to try almost anything. I spent most of the day yesterday in some amount of pain. I swear, sometimes I can feel something in there spasming. Not a muscle- something deeper. I don't know. It's a strange feeling. All I know is something freakin' hurts.

It seems better today, but again.. we'll see what happens with some food. Wish me luck.

My pup is back home, by the way. The vet was actually crying when she told me about his stuff. To be fair, we had also just discussed Robbie and I think I overwhelmed her, but yeah. She cried. She said the smaller mass on the right came out cleanly and looked good. But the large mass on the left is deep. She got what she could get, but it goes down between two teeth. And she said that the texture of it doesn't look good. We won't know for sure until the biospy results come back (about a week) but she's fairly convinced it's cancer.

He seems okay. He was a little subdued yesterday. He's probably sore. He has some pain meds which also probably just make him a little out of it. But otherwise, he seems okay. Think some good thoughts for him, too.


Tuesday, July 22, 2008

Updates & pictures

They pulled his NJ tube and put an NG tube. He's desatting more but still on room air. He's spit up several times.

The doc says at this point he's willing to do anything to get him to gain wait- up to and including putting him back on the vent. He was clear that we're nowhere near that point, but it is on the table. He needs to gain weight. Period.

And he lost 30 grams tonight. I cried.

His stools were a little better today. One was actually almost normal in the morning, but they got a little worse again in the evening, though still better than they were.

Tomorrow they're going to add some fortifier again and see what happens.

Please pray.

My pup had his surgery today. When she called afterward she said he did well in surgery but didn't sound very positive. She said she got as much of the tumors as possible without getting too invasive. It left me with the distinct impression that they were invasive, so she couldn't get them all. We should have lab results in a week.

I saw my PCP today about my whatever-the-hell-hurts-in-my-side. She thinks it could be the start of an ulcer, maybe gastritis. Could even be just plain ol' lot of stomach acid tearing my gut up. She blames stress. YA THINK?
Anyway, she said it was possible that I could have a stone in a duct they can't see on the ultrasound but usually when that happens, my liver panel would be off and it was fine, so while it's POSSIBLE, it's not likely.

She gave me a bunch of samples of prevacid & told me to take 2/day for the next few weeks, keep a lighter diet and if I'm still having attacks in 3 weeks, come back and she'll likely send me for some sort of fancy scan of my liver etc. A HIDA scan or something? I'm not sure. I'm a bit sore today but NOTHING like last night. It seriously hurt at least twice as bad as my C section incision ever did. If I hurt this bad w/o stones, I don't know how people who have stones live. Holy crap, it HURT.

Anyway, enough of my whining.


A look through my porthole:

Mommy and Me:

Yeah. I'm pretty stinkin' cute.

Hands...touching hands... reaching out...

I can wear clothes now!


The digestive issues continue.

He had a lot of diarrhea yesterday again.
The nutritionist came down and wanted to add some sort of fortifier to his breastmilk because his growth pattern is so pathetic. They said no because of his stool issues.

He did gain 40 grams last night which is good. They weighed him with his CPAP on so there might be an extra 5 grams in there that isn't his, but still, it went up and it went up the way it should. That's good.

Then I called to check on him this morning and he'd have bloody stool overnight. Got an Xray, everything looks okay. But my nerves are shot.

His breathing is still very good.

Basically, everyone is discussing what to do about his tummy.
They discussed trying him on formula because sometimes they'll tolerate 24 calorie formula better than they'll tolerate breastmilk fortified to 24 calories (BM is 20 calories on its own.) That made me sad and scared me because of the digestive issues and my fear of NEC.

They also discussed maybe trying to move his NJ back to an NG (back to his stomach instead of his intestines) to see if that helped. That would be my preference, but I'm not a medical professional. But I can't help but wonder if the bloody stool incident won't make them try that before they do much else with his food.

The NJ tube helped his breathing by leaps and bounds, but the hope is that he's older and much improved now so maybe he could handle a bit more reflux than he could a few weeks ago.

I don't know. I just know we need prayers. Lots of prayers. Goats, llamas, moose, whatever.

In the meantime, my dog has his surgery this morning. Wish him luck, too.

And last night the whatever-it-is in my side went crazy. The ultrasound of my gall bladder said it was fine but that my liver is enlarged and fatty. I don't know what the deal is, but I did have some greasy chinese food yesterday and almost went to the ER last night. It started aching a bit when I was kangarooing but was manageable. But by the time I drove home from the hospital, I was literally moaning in pain.
I came in and tried to lay down but nothing helped. I was in tears.

David brought me one of my motrin leftover from after I had Robbie (which I didn't even need for the C section but HAD to have last night) and I slept for a while sitting up.

This pain is mostly in my back, on the right side, radiated to the front and into my shoulder. Upper right quadrant pain if ever I heard of it. I'm just waiting for the doctor's office to open this morning.

I won't be going to work today. Mostly I'm just playing it by ear. Drop the dog off at the vet, call the doc when they open and then depending when they can see me, I might sneak up to the hospital to see Robbie during the day, or I might wait and go in the afternoon. We'll see.


P.S. If any preemie moms out there dealt with digestive/growth issues like that, I'd love to hear from you. I'm terrified and could really use some stories of encouragement.

Monday, July 21, 2008


Well, the day was about the same as yesterday.
Breathing is still good. Pooping is still, well, if you'll pardon the pun, shitty.

He did manage to gain a robust 5 grams tonight. Not exactly the 30 they like to see, but it's in the right direction, at least.

I'm still very worried about the digestive issues. It just seems like things aren't getting better. And no one can answer how we'll know if the bacterial infection is better etc.

When I got in today, they asked me to start pumping a little bit different. I'm to pump for 10 minutes, then change bottles and finish. They want to seperate my foremilk from my hindmilk. Hindmilk has more fat. They want to collect some of that and feed it to him for a few days and see if that will help him gain some weight. I'm not going to lie and say it's not a little frustrating, but anything that will help.

We only kangarooed for about an hour and a half but only because I had to pee so bad I was literally afraid I was going to pee in the chair. I swear I peed before we started, but it would not be denied. I was so upset with my bladder for cutting my holding short.

He was on the cannula for 3 hours today.. while we kangarooed and a little padding before and after. His nurse tried to talk the NP into letting him go longer, but they don't want him to have to work any harder to breathe than absolutely necessary because it burns too many calories.

So we're back to the vicious circle. If he'd gain more weight, he'd breathe easier, and if he could breathe easier, he'd gain more weight.

Som girlfriends came up for "girls night out---at the hospital." It was no Melting Pot, but the company was good. And they brought meals & treats, too! It's a good thing we bought that deep freeze for breast milk because there was so much food I couldn't fit it all in the fridge & regular freezer. I'm blessed by friedship.

Speaking of blessings, one of the people I was friendly with in the NICU got to go home yesterday. Their daughter was born at 33w with a heart arythmia. She had to go home on .1 liters of oxygen, but is otherwise in great shape. My heart soared to hear the news.

In any case, it was an overall decent weekend. We still really need prayers (and we may have to graduate from goats to llamas) for healthy digestion and weight gain, but breathing is going fairly well. That's something, at least.

I'll try to get pictures uploaded & posted soon. I had intended to do it today but ended up hanging out at the hospital a lot later than I'd intended and I need to get some sleep. Working day shift this week.


Saturday, July 19, 2008


Well, Robbie had a good day. I almost hate to write it down because you know what happens after a good day.

But he did.

He was on 21% (room air) all day. They put him on the nasal cannula for nearly 3 hours while we Kangarooed. Still 21%. He alarmed 4 times in about 9 hours. And really, it was twice, just two times each. And the 2nd set was when I was taking his temperature and had to dig through lots of blankets & a sort of half put-on t-shirt to get to his armpit. And then, it was only down to 77%. (Below 80 alarms.)

This comes after having not been able to kangaroo last night because within 5 minutes of getting him out, he almost steadfastly refused to breathe. After stimming him back into breath at least 4 times, he had to go back to bed. And that was pretty much the last trouble he had. Weird.

Of course, tonight, we put him back to bed about 7:30. Well, not back to bed, they put him on the scale to do his cares and such first. And he puked. A couple of times. And then when she threaded the tube down his throat to suck out his belly, she didn't get much, but at the tip of the tube was a drop of blood. I froze.

She said it's likely trauma from shoving this tube down his throat twice a day. And that makes sense. But I will continue to be freaked out about it for a while. Add another mark in the list of torture.

I will say this. You know all those horrible stories you hear about people doing awful thing to their kids? They used to piss me off. Now they hurt me.

A friend told a story a few days ago about someone leaving her kids in the car while she went to get high. Then, of course, she left with them. So she's driving her kids around while she's high.

I was relating the story to David tonight and started to cry. I just can't imagine risking my child that way. It hurts me so much to see them poking at Robbie all the time. And I KNOW it's for his own good. But to risk him for THAT? It makes me sick to my stomach.

I can't imagine hurting him on purpose. I just don't know how people can do it. I told David to promise me we'd never take Robbie for granted. He said he promised to get a babysitter the next time he went to get high. My husband- the comedian.

Anyway, after seeing Robbie at the hospital today, David and I went out. On a date. To the Melting Pot.

I feel a little guilty about having spent the money but we've been so good and honestly have barely seen each other all week. And we needed a few hours together.

Dinner was amazing, as always. I was a bit anxious. I have a really hard time being anywhere except home & the hospital. I'm hoping it's not the start of some weird phobia. Or at least that it will dissipate when things in my life settle down. I'm half convinced this is probably some weird form of PPD, but it's at least manageable.

And now we're home. I managed to make it through dinner w/o calling the hospital. So now I'm waiting another half hour or so just to call and see how his midnight cares went. Then I'll go to bed.

Tomorrow I need to do about 3 tons of laundry and spend time with Robbie. And some friends are coming for a girls-night-out-at-the-hospital. Which I happen to think is about the sweetest thing in history. They're bringing me care packages of food and going to hang with me at the hospital cafeteria. That way I can be close to Robbie. How awesome is that?

In the mean time, please keep praying. Robbie last lost 4 ounces the last day or so. He did get a bit of a diuretic yesterday because he got another blood transfusion and they wanted to make sure his lungs don't get full of fluid, but 4 ounces is a lot in a little guy. That's like me waking up 25 pounds lighter.

His tummy issues are pretty much stable. Not better, not worse. I'm still freaked out. So please pray that he can keep from getting sick and can put on some weight.


Friday, July 18, 2008

33w gestation

Another 15 hour day. Running on empty.
Have to be up early again, have to take milk to the hospital before work.

Seeing Robbie before work is wonderful. If only I had a magic teleporter to get me there. It's 45 minutes to the hospital and then about 30 back to work. He's totally worth it, but if we could somehow make the days more like 30 hours long, that would help a bit.

Things are about the same.

His breathing is about the same, though his O2 requirement is up a bit. They're thinking a little fluid build up again and starting him on a diuretic. Again.

His was good most of the day as far as As & Bs, then yet again, our kangaroo set him off. His nurse's theory is that he gets too comfortable on my chest.

I tried sitting up and that seemed to help, though he did have another one after that.

His pooping.. .well, I have no idea if it's better or worse. No one seems to be able to really answer that. He's pooping less, but it's still watery when he does.

I don't know. Again, no one seems particularly concerned about NEC except me, but I'm still scared to death.

I'm doing my best, but I have to say, if tomorrow wasn't Friday, I'm not sure I'd make it.

My milk production is down, my stress level is up. I'm fairly useless at work but I have to be there for the paycheck.

My daydreams about winning the lottery include renting a house close to the hospital and buying nice recliners for the NICU. And of course, quitting my job. But that last thing isn't new.

If you're one of the people out there praying for us, please pray for Robbie's digestive system to even out. That's my biggest concern at the moment. The breathing will come with time. But his belly issues could be really, really scary if they get worse.

And you know- some winning lotto numbers would be helpful, too.


Thursday, July 17, 2008


Well, as they say, two steps forward, one step back.

Or in the case of the NICU, half a step forward, 3 steps back.

Here's the deal as I know it.

His tummy issues continue. I spent the day obsessing about NEC. I made the mistake of googling. I even told myself before I did it that I shouldn't. But I did. And, of course, freaked myself out.

The good news is that no one except me seems worried about that. His day nurse says his belly doesn't look like that, his night nurse (who has proven herself to me in the past- she's the one that caught the cold stress when he was a weak old) doesn't think he's "acting sick." The doctor actually upped his feeds very slightly today, and if they suspected NEC, they'd actually stop his feeds altogether.

Robbie has had a lot of sucking today, though.

His breathing has sucked. I admit that I'm so disappointed because he had SUCH a good day on Monday. But, he's been down to room air a time or two in the last couple of days which is great. The trouble is that he's also had some pretty big desaturations. And plenty of As & Bs. Not so many that they're worried, but enough to scare the shit out of me.

I got to his bedside at about 8:45 tonight. At 8:45 and 10 seconds, he stopped breathing and dropped his heart rate lower than I've ever seen it. Scared. I'd already spent all day worrying about him, so that set off tears.

Some of the parent volunteers were coming thru just then, so they got to watch him.. well.. suck. THey were lovely.
One of them I had met before, the other I hadn't.
The one I hadn't offered me her home number. And at one point asked if I needed a hug. I actually said yes. And she hugged me a long time. And I cried. A lot.

Shortly thereafter, I went to change my shirt to kangaroo and prayed to God that he just let Robbie be okay. I just need him to be okay.

Then I went back to hold him.

Night Nurse gave me a little lecture about not watching monitors and just enjoying my baby. I did my best.

We had about 30 good minutes before he started sucking again.

Then we had another hour of mostly okay, though she kept having to turn his oxygen up. Over 50%. That's not how kangarooing is supposed to go.

The last half hour, he sucked more. I finally had her put him back to bed because I don't think either of us was doing that well. Still, we got 2 hours together, so it's something.

But back to the sucking.

He's had air sucked out of his belly.

He's had bile sucked out of his belly.

He's had boogers sucked out of his nose.

He's had secretions sucked out of his mouth.

His day nurse apparently got a ton of stuff out of his nose. He'd had a big desat that was otherwise unexplained so she checked. Sure enough. A bunch. He improved a bit after that.

His night nurse sucked a ton of air out of his belly. Along with a bunch of bile.

She actually thinks the air in his belly is playing a part in his breathing issues. His belly is pushing on his lungs and causing some trouble. She also thinks that's why he's throwing up bile. She thinks the bile is normal, and it's coming up because his belly is full of air.

Everyone seems to agree that the CPAP is the source of the air. But of course, he has to have that to breathe.

So, twice a day, they thread a 2nd tube down his nose and suck it out. Is it any wonder that preemies often have trouble with sensory issues?

Oh. and he lost weight again. He's at 2lb 11 oz. That's down about an ounce over 3 days. I honestly don't care about his weight. Except that with weight comes progress. So we try to think fat thoughts.

So that's where things stand for now.

It was another long day. Close to 15 hours.

I'm off to bed.


Wednesday, July 16, 2008


Everything is okay. Was just another very long day (nearly 17 hours again) and was too tired to post last night.

Robbie's stool culture came back growing two types of bacteria so they changed his antibiotic to one that will treat both. It's oral, so no IVs for him, thank goodness.

His breathing has been much better. When I left the hospital last night, he was on 23% oxygen and when I called to check on him before I went to bed, he was actually on room air (21%.)

They said his chest x-ray yesterday was markedly improved over Saturday's, so the CPAP is doing its job.

The only thing I'm frustrated about right now is the bile in the stomach thing. There was the theory floating about that the NJ tube was blocking the opening from the stomach to the intestine so maybe the bile just wasn't passing through.

On the X-ray, they could see a lot of air in his tummy & bowels. Could be from the CPAP, could be from the bacteria.

They decided that twice a day, they'd give him an NG tube, suck out the air and put in the antibiotics. That gets the antibiotics into his entire digestive system. It's also bright pink.

I figured this would answer the "is stuff going down" question and then we'd know.

Well, this morning, she said she sucked about 4-5cc of bile out of his stomach when she was pulling air out. But no antibiotic. So stuff is going down, but he still has all this bile in his stomach. But no one seems concerned. His nurse said maybe his body is reacting to all the food going into his intestine and making lots of bile. I don't know.

This is something I intend to discuss with someone tonight. I'm not a doctor. I'm not a medical professional at all, but I'd like an explanation that makes sense, at least.

But, either way, breathing is good. Eating is adequate. The doctors are pleased.

I'm off to work.


Tuesday, July 15, 2008

16+ hour day.

Very long day, very short update.

Got up early and left for the hospital around 8:30 to see Robbie a bit before work. He was having a much better day. I got to hold him like a baby for a little while. (pictures to come later)
Then I headed to work. I cried walking out of the NICU but got it together pretty quickly.
Got to work and was doing okay until I got into my email inbox and read the email that my boss wrote to the office to tell them I was on bedrest in the hospital and likely having the baby very soon. The emotions just came FLOODING back to me about that day and next thing I knew, I was crying. But again, I managed to straighten up pretty quickly.

I did almost no work all day.

The boss was actually quite nice about pumping at work- much to my surprise. Thought having my boobs out at work is weird. Even in an office alone.

Had a talk with a coworker who lost a baby at 22w many, many years ago. Yeah. Tears. For both of us. But that would have happened any day.

After work- back to the hospital. Robbie still having a good day.

AND--- he graduated to intermediate care! He has a new spot in the NICU. He's on the other side of the room in a fairly quiet corner. Had a nurse I like, too.. haven't had her since Robbie was a couple of weeks old.

His stool culture came back positive, so he's now on antibiotics for that. It's apparently an overgrowth of something that should be there. They're just oral antibiotics, so no IV.

He lost weight again, like 20 grams, which sucks, but is understandable considering how much they've pulled back his feedings. They're leaving him on straight breastmilk for today and maybe tomorrow. They'll decide in the morning. But he'll get a little longer to give his bowels a break of sorts.

We kangarooed for about 2 1/2 hours. He had one brady, but overall, he was having a good night. Oxygen around 28% and he was still hi satting quite a bit.

I got pulled over on the way home (I knew I was speeding but really, truly didn't realize quite how much. I thought the speed limit was higher than it was and that I was going a little slower that he clocked me. Oops.) But he let me off with a warning. I don't think I've ever gotten off with a warning before. It was definitely appreciated.

Got home around 1am. Unpacked my stuff, cleaned up my pump supplies, answered a couple of emails and now I'm updating here.

Now I must go sleep quickly.

Gall bladder ultrasound in the morning. (Nothing major to worry about. I really expect it to be negative. I'm feeling SO much better.. but the doc insisted.) Gotta be up at least by 7.



P.S. Pray for balanced bacteria and good weight gain!

Sunday, July 13, 2008

6 week update & pics

Well, it's been a shitty day. Both literally and figuratively. The poop issues continue. He's had another 6 hours of pedialyte and is now on straight breast milk again. It's not as bad as it was, but not great.

Every test they've done is fine. We're still waiting on the results from the stool culture. Could be an overgrowth of bacteria. We'll see.

There's been no more spitting up, which is good.

The doctor isn't terribly concerned. He doesn't really think the puking & the pooping are related to each other. And since his tests are good, he's not concerned. He is going to take it easy on the feeds (they lowered his volume a bit as well) but not stop them.

His breathing today was just not good. Lots of As & Bs. He had several right in a row after we'd been kangarooing for 2 hours. He went back to bed quickly and that snapped him out of it. But he had a couple more tonight before I left. It honestly wouldn't surprise me at all to get the call that he's back on the vent again.

The staff isn't terribly concerned. We get the "this is usual preemie stuff" line a lot. Which is good. And I'm trying very hard to count my blessings. As I was pumping this afternoon, I heard a mom go down the hallway crying hysterically. I don't know who, what or why. I don't think I want to. I already cried too much today as it was.

My eyes hurt from crying really. I really cried most of the day. Between lack of sleep, worry & dread about going back to work tomorrow, I have been a wreck all day.

Robbie's nurse was wonderful. She went the doctor over to talk to us even though really, she had already explained everything. She just felt like the doctor needed to talk to us anyway.

The doctor asked when I saw my OB last. He thinks I have PPD. Honestly, I don't think I do. Yes, I was a mess today. But I have reasons. And when Robbie improves, so will I.

The doctor was very sweet and talked about his wife & her anxiety during her pregnancy with their daughter & beyond. Turns out his wife is a NICU nurse. They have too-much-knowledge disease, too.

And the nurse then talked to us about choosing some primary nurses. Basically they'd be nurses that if they're working, they're assigned to Robbie. I asked if she was volunteering and she said she was thinking about it. I am, too. I think it's a great idea for a number of reasons.

1) Knowing the people is nice.
2) Less chance of having the couple of nurses I don't like.
3) Continuity of care is good for Robbie. They hand off to the next nurse with a full report each night, but it's not the same thing.
4) Having people that I trust makes it a lot easier for to leave. I don't have to wonder "will this person pay attention?"

Now I just have to pick my people and submit them. They don't have to accept. And that makes me nervous in a grade school way. I dont' generally give a shit if people like me or not, but people not liking my kid.. well. It would upset me. Even though they may have plenty of reasons for not accepting. They may like to do different things on different days to break up the monotony. Or they may just feel like Robbie is too much of a handful. Or maybe they don't like me. But still.

Several people came by to check on me because I was upset. Of course, that didn't help me contain my tears. It seemed like every time I'd get myself straightend out, someone would come by and pat me on the back and ask how I was doing. More tears. These people clearly haven't gotten my don't-be-nice-to-me-when-I'm-trying-not-to-cry memo.

And way too many people gave me a lecture about doing "something nice" for myself. OR going to a movie. Honestly, I get that LOGICALLY. Yes, yes, take care of myself. But honestly, the idea of going out somewhere makes me feel panicked. Even going out to eat after 12 hours at the hospital I would gladly live at the hospital if I could. That's not an exaggeration at all.

I drove by one of those lottery billboard which proclaimed that the latest jackpot was 33 million. I spent the rest of the drive day dreaming about how I'd donate good recliners to the NICU, stay at the nearest hotel and spent 18 hours a day there. It struck me later what an odd day dream that was. (Don't worry. I haven't completely lost it. In my dreaming, I also paid off my house & car and quit my job, too.)

But tomorrow I go back to work. I might try to sneak off to the hospital before work. I don't have to be in until 11:30 and I think maybe if I can get a little Robbie fix before work, maybe it'll help me get through the day. Then I can spend some real time there after work. It's a lot of driving (35 miles from our house to the hospital. Work is in between but only about 7 miles from home), but I'll live.

Anyway, enough of my whining.


Wow! This mask free stuff rocks!

Bright eyed on a nasal cannula

Back on the CPAP. Someone get this damned thing off my head!

Can you see how much bigger I've gotten? 6 weeks, baby!

Don't let the angelic pose fool ya!


Rough morning

Robbie has had a rough morning. After having improved on plain breastmilk for a short time, this morning, he's having trouble again and is back on the pedialyte.

In addition, he's now thrown up a couple of times. They don't seem TOO concerned, but it does seem as though they're puzzled.

I'm hitting the shower and heading in now.

Please say some more prayers that my little guy gets better. It's really hard not to fear the worst when this stuff happens.

Things that would be a small problem for a full term baby can be catastrophic for a preemie.



The question of "WHY" comes up a lot lately.

I wonder how and why this all happened to us. I wonder why it has happened to the people I see all around us every day.

Some people wonder why God made or let this happen.

I don't really believe that God had anything to do with it. But I do think that He can make a lesson out of the things that have happened.

I've often said that I felt like my infertility was an answer to a prayer. I often prayed for patience because I had none. Infertility certainly taught me a little.

Well, I'm also a bit of a control freak. (What? I know- you're SHOCKED!) And I wonder if this whole thing isn't a lesson in just how little control we really have. Already, I find myself not caring nearly as much about little things I used to obsess over. I used to need things in a specific order, done a certain way. Done MY way. Now I don't care if they get done at all. Nothing is as important as being with Robbie.

Spots on my stuff used to bother me. Now I can't seem to do anything without getting my milk on something. I barely even notice.

These things used to make me feel like I had some control in my life. Now I realize I really just don't. And it's okay.

I guess I'm growing out of some of my issues.

And then there's Hope.

For so many years Hope has been my enemy. I was scared to hope to be pregnant, scared to hope to stay pregant. Scared to let myself even think about good things happening.

And now, it's all I cling to.

Sure, the fear rears it's head.

Last week when Robbie threw up bile and scared me, I was crying. It had been a couple of good days and I said out loud "I knew this was coming. Things were going too well. Something bad always comes after good things happen." The nurse said quite simply "It's okay to expect good things to happen."

At the time, I inwardly scoffed. But you know, she's right.

Of course, Hope is scary. It means you can be let down. Disappointed. Heart broken. But it's all I've got these days.

Tonight I listened as the mother of the baby next to Robbie had her baby baptised. The baby's time on this Earth is short. She was born with a trisomy. They knew she had a malformed hand before birth, but didn't know she also had a multitude of other problems that just aren't medically fixable.

Later in the evening, I tried very hard not to listen and she discussed what amounted to a living will for the baby. No heroic measures.

The baby's dad refuses to have much to do with her. He has said to "leave her in the box" referring to the isolette. I wish I could be disgusted or horrified. Mostly I just feel sad.

He's protecting himself.

And I recognized it well.

I spent so much of my pregnancy with Robbie being scared of losing him. I was afraid to connect to him trying to spare myself the grief.

When I got sick and had to face that he may not live, all I could think was how much time I wasted being scared instead of just loving him.

I've been thinking a lot about something shared with me by the dad of Robbie's NICU girlfriend. He told me that his parents had 14 children. His mom has 6 miscarriages and a baby with Down Syndrome who lived only a few months.

I guess when he'd expressed to her one time that she didn't know how she'd managed, she told him that babies are a gift from God. And when they are called home, there is nothing we can do to fight it. Our job is to love them while we have them- whether it be a few weeks or many years. That's all we can do. Love them the best we can.

It was touching when he shared it. But it seems more and more profound the more I think about it. It doesn't just apply to babies, but to everyone, really. No one knows their fate. For all my fears about Robbie's health or David's or my own, anything could happen.

So I'm trying to resolve not to fear Hope. Not to waste time that should be spent loving something or someone because in the end, it's my job to love them as best I can while I have them.

I hope the dad of that baby realizes it in time. Until then, I'll pray for them. Maybe you'll join me, too.

As for Robbie, he's hanging in there.

His poop issues have continued and I guess with my prodding, the nurse made some noise about figuring out what was going on. He had a CBC and an X-Ray today to make sure he didn't have an infection or blockage. Both were normal. His day nurse managed to get a sample sent off for a stool culture to see if it can tell them anything.

They gave him 6 hours of pedialyte today trying to settle his stomach. Then they pulled the beneprotein out of his feedings, hoping that would help. After the pedialyte, it seemed to improve a bit, but after the food it got worse again. Still not as bad as it had been, but not great, either.

Tonight they gave him straight breast milk with no additives to see if maybe that would do it. If not, they were going to go back to pedialyte again.

They're not overly concerned about it, but since it's gone on for a few days now, they want to make him feel better. I'm glad to finally have someone paying attention.

I expressed my displeasure at the doctor's upping his feeds in spite of Robbie's tummy issues. Fortunately the NP & his nurses agreed with me and were caring for him well. (In my opinion, anyway.)

He had a bad breathing morning. Apparently had a rash of As & Bs and the nurse admitted to me later that she was a little worried that he'd have to be reintubated. They put him on straight CPAP and he's had a much better day. He was cranky as all get out because he DESPISES the prongs, but his breathing was SO. MUCH. BETTER.

Tonight, they took pity on him and found him a mask that doesn't go up his nose. They'll alternate a pronged mask and this one every 4 hours. But the pronged mask that they're using now seems to annoy him less as well. He actually rested for a while tonight which was a great improvement.

So we keep our fingers crossed (hope!) that this works. He's been off the vent for nearly 8 days now. Hopefully it sticks.

Tomorrow- pictures!


Saturday, July 12, 2008

Another long day

Another long day today.

Had my 6w postpartum appointment with my OB this morning. Nothing earth shattering. The hospital hadn't sent her the results of my MRI so she didn't know I didn't have brain cancer. She was relieved.

I seriously love my OB. Really, all the doctors involved in giving Robbie life were freakin' amazing. My RE, My OB and of course, Dr. C- one of the neonatologist. (We need a name for him. Dr. Mcsomething. Hmm. I'm not very witty tonight. Help a girl out here.)

Anyway, we had a nice chat. She asked about my husband's doctor's appointment. She even commisserated that August 22nd was way to effing long to wait for a scope.

I've still been having some pain on my right side. She sent me for labs a few days ago to make sure my liver was really okay. It is. The latest theory is that it's my gall bladder. I've been trying to eat a little better the last few days and it seems to be improving. I figured I'd just call my PCP if it acted up again. Honestly, my OB has done enough for me and this isn't her area. But she all but insisted on writing me an order for a gall bladder u/s. She knows I don't really like my PCP so she just helped me out. I really need to send them all a thank you note.

Speaking of "all of them" her nurse is back from maternity leave. Turns out that her son had some sort of heart issue when he was born and had to have surgery. He was in the same NICU Robbie is in for about a week. (He's totally cured now, though.) Anyway, she was just so sweet. She asked how the docs were treating us and told me which one she didn't like I have had very little interaction with her, so I can't say if I'd agree or disagree, but it amused me that she opened right up with who she did and didn't like. She asked about the peris that I worked with and I told her about Dr. Sunshine. You could almost see her making a mental note that he was an ass. Again, made me laugh.

Anyway, really, the only thing of real interest was the discussion about birth control. Our original plan was that we weren't going to use any. I mean, it took us long enough and enough medical intervention to get pregnant that the chances of us conceiving on our own is fairly slim. But as the fertiles point out- sometimes Bam! it happens. And that was fine with us.

Until preeclampsia.

Now, the thought of being pregnant again makes me want to puke. But what will we use? With breastfeeding, hormonal would be something progesterone only. The mini pill, depo, IUD or implanon.

I'm DEFINITELY not going back on depo. (Much to my doctors relief- her respone was "Good. Because I hate it.")

IUD could be complicated because I never dialated and it could actually be a problem with my classic c-section. (That was news to me. Creepy! It could hook my scar or something insane.)

I don't want the implant because I'm not really prepared to make that long term of a decision yet.

The mini pill wouldn't be bad, but I know myself well enough to know that I'm not going to remember to take it at the same time each day. I can't manage to get myself a drink of water half the time. And I've heard the spotting-all-the-freaking-time horror stories.

So that leaves barrier methods. I was sort of angling for a diaphragm but she said she doesn't like them because they're just not really effective. I guess they're listed pretty high on the info they give out, but in real life, they're more like 75-80% effective. Worse than condoms.

She suggested condoms. Cue me making a snarled face. I hate condoms. And I'm not 17. And I hate condoms. Did I mention that I HATE condoms?

So now what? Theoretically, I shouldn't ovulate while I'm pumping so regularly. And I probably wouldn't get pregnant even if I did. But.. what if. It's just too high risk right now. Hell, I think my doctor would kick my ass if I turned up in her office pregnant again. We won't even discuss the emotional & physical toll it would take on me.

I still don't have an answer. David would use condoms if I asked him to. He's a saint like that. But damn.

Anyway, enough about that.

After I left the OB's office, I went to the hospital. Since I was there so early, I was present for rounds. Dr. M and the NP decided to take him off his steroids completely. He was getting such a low dose that they decided it was pointless anyway.

Then came the discussion about his lack of weight gain. He did gain 12 grams last night but Dr. M doesn't think it's enough. But he's already maxed out all the way around. But he decided to go up on his volume anyway. You could tell the NP didn't approve. Apparently they normally go with 130-160 ml/kg. he's already at 160. The doc said to put him up to 8.5ml/hour which put him at 162 calories. The NP did the math and said it was 165. He said to do it anyway.

Then the nurse chimed in that Robbie has had some diarrhea. She clearly didn't like the "more volume" answer either.

Dr. M asked to see a diaper. The nurse changed Robbie and showed him. Yep. Runny. The doctor said to do it anyway. When I pushed and asked if his poop was okay, Dr. M leaned in and whispered "he needs the calories."

I should point out that Dr. M is notoriously the most conservative Neonatologist in the group. It's been mentioned several times. So I tend to believe that he wouldn't be pushing if he didn't really feel it was important.

His feeling is that Robbie's breathing is poor because he's puny. And he's puny because he's using all his calories working so hard to breathe. So something somewhere has to be pushed.

So cross your fingers. I'm worried. I'm worried about the diarrhea in general, but also about them overdoing his feeds.

I listened to Dr. M talk to some parents whose son had to have part of his intestines removed today because they were necrotic. Not what I needed to overhear today.

These things that you just never think about are all SO IMPORTANT now.

They also decided to alternate him between CPAP & nasal cannula. Robbie had several As & Bs overnight and this morning, so they're hoping the CPAP will help, but also don't want to hurt his nose any more than absolutely necessary.

The first round of CPAP started at 11:30 this morning. Robbie was NOT A HAPPY BABY. He work both his nurse & me out. Trying to get it in the right place so it worked, keeping his mouth shut so it didn't blow out his mouth, keeping him calm.. it was exhausting.

When it was time to go back on the cannula, we kangarooed. SO much better than yesterday. He slept most of the time and was down on his oxygen to as low as 23% at one point. Much better day. 3 hours of good love.

He went back to bed just before shift change (7pm) and was just wide awake and super alert. I swear to you that I think he smiled. Twice. I mentioned to his night nurse from last night that I could have sworn he smiled and she said he smiled last night. Now, I know he can't smile yet. But he certainly did look happy. I beamed.

Then he had to go back on the CPAP. Fortunately I guess he was just so tired that he passed right out. She got him in a good position and we all agreed not to disturb him.

We left around 9 and he was still snoozing. I called at 10:30 (I couldn't find my camera- I left it there.) and she said she hadn't touched him. He was on 28% and doing great.

What a relief.

I just checked in again and he gained 10 grams tonight. Again, not the 30 they hope for. And he's still having diarrhea.

She's going to mention it to a NP and see what they think. From my limited research, it can be due to him getting too many calories for him to absorb. So I don't really understand how ADDING to that is going to help. I'm not a doctor. But I'll certainly be asking about it again tomorrow.

That was pretty much the day in Robbie.

As for me, I think the lack of sleep and just general stress level got to me. I was pretty weepy this afternoon. I still see him struggling to breathe and it scares me. And it pains me.

And thinking about going back to work.. well.. it's not pretty.

And scary stories slip into my mind sometimes. There are many, many more success stories, but the bad ones seem to linger longer. I've had a few nightmares. I won't rehash them but you can imagine. I even dozed off while kangarooing this afternoon and dreamt that he had turned blue. I awoke with a start and checked him and his monitors. Both were fine. And that was one of the more mild ones.

I worry about how I'm going to manage when he does come home. I'm afraid I'll be a basket case checking him every 5 minutes. I think I'd have been a paranoid mom anyway. And now, there is no hope. I'm just terrified all the time.

But.. I forge forward. To love someone is always a risk. And I've never loved that way that I do now. It's a great risk. Good thing he's worth it.


Friday, July 11, 2008


Just a quick post tonight. I'm so tired I can't hardly think straight.

I actually went back to bed after I got up to pump this morning. I was so tired. Of course, I woke up later and felt guilty about not being at the hospital.

I still had to do some business stuff at home. I called my boss to make arrangements for going back to work Monday.

I'm going back to the evening shift since that's what I was working when I left. I haven't quite decided if that's what I want to stay on or if I want to go to days. I think I'll try the week of evenings and see how it goes at the hospital.

I also informed them I'll need arrangments to allow me to pump. I had to call our disability department to do that. I think that's stupid, but whatever. Illinois has a breastfeeding protection act, so I'm not too worried about it.

Of course, I kept thinking about going back to work as a drove to the hospital. I cried the whole way there. Monday is not going to be a good day.

I know it's the most logical thing to do. Not only would we start using our savings right away and it would run out sooner, but if I work while Robbie's still in the hospital, that's just more time to put more money into our savings so I can be off even longer. But man, I hope they don't expect much out of me.

In any case, I got to the hospital and they were talking about moving Robbie to intermediate care. Basically, it out of the highest level of ICU care. That equates to being around the corner from where he is now.

Robbie's NICU girlfriend moved yesterday so I was excited. Both to "graduate" and to rejoin my NICU partner.

So I went around the corner to tell her that we were joining her and she said that she hates where she is. It's even more crowded there and she hated her nurse today. (I wouldn't have had her nurse, but it just added to her dissatisfaction with where she is.) It was also very bright there. The babies don't like the lights, so it troubled me.

When I went back to Robbie, I was asked if I WANTED to move. The pressure was almost too much for me. On the one hand, we want to graduate. But on the other... well..
I commented on how bright it is there and they said I could request the lights be turned off.
Finally I said we'd move.

A few minutes later they decided I wasn't moving. Basically because I'm at the hospital so much, they decided that we needed the extra room. I felt like maybe I should feel bad that my hours at the hospital were maybe "in the way" but I couldn't muster any guilt.

A few minutes after that, they decided we were moving- but somewhere else.

Then they decided that we weren't again.

It's a good thing I really didn't care either way. One of the RTs commented that it was a good thing I'd been around a while and not a newbie wondering WTF was going on.


We ended up staying where we were.

Robbie had a decent enough day, overall. They put him back onto the nasal cannula today. He's having some nose problems (his septum was bleeding. Poor little guy.) from the CPAP (he fights it so bad!) and decided that it really hadn't improved things much and he's so much happier on the cannula that they'd give it another try.

It wasn't a great kangaroo, though. I held him for close to 3 hour, but he really only slept about 20 minutes. The rest of the time, he'd doze off and wake up and squirm. They actually had to turn his oxygen UP while he was being held. Usually it can be turned way down. He was just fussy.

He wasn't breathing really great. Usually even when he has apnea, it's steady breathing and then he stops. Today he just never got to steady breathing. Up and down, up and down..

The RT that I mentioned yesterday came by to talk about his cannula and I told her how he was doing. I'd already discussed it with his nurse. (Do I sound like an obsessive mom yet? Because I'm pretty sure I crossed a new line yesterday. Thank God they seem to value my opinion.) She said they would keep a close eye on him. They can still his air volume up to the next level. And they could put him on the CPAP for a few hours a day. She was going to see if she could find a mask that doesn't go up his nose to avoid irritating his septum anymore.

After he went back to bed, he went down on his oxygen needs again (told you. Bad kangaroo day.) and seemed to do better again.

He had a run of three bradys in a row tonight and scared me, but his night nurse added a rolled up cloth under his chest to change the position he was in and it seemed to help. When I left, he was doing well.

I just checked with his nurse and he gained 12 grams today. The doc would prefer he gain 30 a day, is okay with 20, and says he'll accept 15. So it's not a GREAT gain, but at least it's a gain. He's had 2 more bradys since I left (3 hours ago) but he's doing okay now.

We'll see what the morning brings. I see my OB for my 6w post partum check tomorrow, so I'll go to the hospital after I'm done there. I should be there for rounds. We'll see what the doc thinks.

Off to bed.


Thursday, July 10, 2008


Thank you to everyone who posted about my dog.

I can't remember if I mentioned it or not, but a dear friend of mine kept Kenzie right after Robbie was born. He just came home last Friday. My friend has a greyhound. Since there is a chance it's some sort of infection, I called to let him know that he should check his dog out. I don't know if it would be contagious or not.

Of course, my friend is horrified. He apologized for missing it. Honestly, it was purely a fluke that I saw it today. Just the way he was looking at me gave me a profile view of his cheek. And even then, I almost dismissed it. Even after I felt it, I almost thought I was feeling a tooth under the skin. It took another investigation- this one with my hands in the dog's mouth, which he didn't appreciate- to really find it.

And it had to have come up recently. Kenzie was just knocked out a few months ago and had both his teeth cleaned and 5 moles removed to check for cancer. The vet even commented today that she hated having to knock him out again since she'd just done it.

There is a woman at my vet's office who also has a boxer. She answered the phone when I called this morning. I'm pretty sure that's the reason we got an appointment in an hour. She lowered her voice and whispered "want to come at 9?" (it was a little after 8, then.)

She said her dog had something similar when she was 7 and it was benign.

The vet said she just had 13 year old labrador with 5 growths the size of Kenzie's large one and they turned out to be infection.

So there is hope. The liklihood is that it's cancer. I'm working on wrapping my head around it, but I haven't given up. In the meantime, I love him just a little bit extra.

Speaking of my head- a better subject.

Today was my neurologist's appointment. She has declared that my brain is "perfect." Yes, she used that word.

She came in and got my scans. They were burned onto CD, so she took them out to view them. She came back in and I could see that she had the radiologist's reports (CT & MRI) in her hand. She put everything down and said "I looked at the MRI. Your brain is perfect."

I laughed and said that I always liked to hear from a doctor that I was perfect. She said I could tell anyone who asked that she said so.

Then she read the radiologist's report. She was looking at the CT scan and got to the tidbit about the cyst & tumor and she scoffed, "CYST? TUMOR? WHO READ this thing?" and read off the doctor's name. I sort of half shrugged and explained that's what I was told. I told her that they said I had a cyst or growth on the right side of my brain.

She shook her head in disbelief.

I said I'd been fairly upset about it. She said she'd imagine so but again reiterated that my brain is fine.

She did do a neuro exam. Also perfect.

She explained that with my history, she was looking for things like white matter changes or blood flow changes. With my numbness, she was concerned about lesions indicating MS. There were none of those.

As far as the numbness is concerned, she speculated that perhaps there had been some damage from the pre-eclampsia. Since there was a month lapse between delivery and MRI, she can't say what she would have seen if it had been done sooner. She said that perhaps there had been something there that damaged the nerve that seems to be affected. (She named the nerve, but no way do I remember that.)

She also said it could be stress. Me? Stressed? Posh!

She asked about Robbie and how he was doing. As we were talking, my head tingled and I scratched it. I caught myself and pointed it out. She nodded and said that it wouldn't surprise her at all if it was a manifestation of anxiety. That our brains do very, very odd things when we're anxious.

As I have a history of anxiety attacks (fortunately I haven't had any in a great number of years) I certainly know that to be true. And it seems as good a theory as any.

We did discuss my history of migraines. She said that once I'm done breastfeeding, come see her. She'd be glad to help. But they were unrelated to anything going on. Since I've had them since I was 9, that didn't surprise me.

But that was that.

I went back to the NICU and held Robbie for 3 hours. They switched him from CPAP back to high humidity while I held him. It's a lot easier to manage plus it gives his nose a little break. He did great. Right at the end, he had a couple of decelerations and a brady. He was getting tired. Back to the CPAP he went.

I talked at length with one of the respiratory therapists and she'd kind of like to try him on a rotating schedule of the two types of air. The nurse suggested the same thing today but the doctor rounding didn't think so. But the RT is going to bring it up tomorrow.

The doc came in to talk to us. He's concerned because Robbie isn't gaining enough wait. He stalled at 2lb 9oz for several days. They've boosted his calorie intake to the maximum they usually give babies, though they do occasionally go higher. He was going to up him today but then he gained well overnight.

Tonight he gained a whopping 8 grams. I thought it was more like 15 (and they'd like to see 30) but when we compared and saw it was 8, the doctor said "we're going to have to do better than 8." So I think tomorrow, they're going to add even more calories to his breastmilk.

I asked how concerned I would be and the doctor said not to. That with Robbie's breathing troubles, he just uses a lot more calories than other babies. He said it's not uncommon for a baby with chronic lung disease to use DOUBLE the calories of other babies. He just works THAT hard to breathe.

When I seemed upset (I was) the doctor consoled me. He said that I was doing everything I could do. I'm at the hospital every day. I hold him. I give breastmilk. That's everything. There are things he (the doc) needs to do and they are. The rest is up to Robbie.

It helped me a little, but I still wish there was something more I could do.

I'm not really fond of this helplessness.

But overall, Robbie had a good day. We had a lovely snuggle time minus the last half hour or so. Since I started much later than I normally do, we were still cuddled up when he got into his cranky time. (He gets cranky around 7 or 8 every night. The leading theory is that he hates shift time. Probably too noisy & hectic.) That was when he also started having more trouble with his breathing but he also was just generally fussy. But it was almost normal-baby-like. He grunted and squeaked and generally expressed his displeasure. And I talked to him and soothed him as best I could.

He had a new nurse tonight. She gave him the quickest and frankly, less gentle bath I've ever seen and got him back to bed quickly. He had a little trouble settling in but finally around 9:00 he seemed to get there. Other than the fact that she was so abrupt with her bathing technique, the nurse seemed pretty decent. She listened to my advice about his mouth breathing & positioning. She even thanked me for it. And she got him snuggled in and positioned nicely, so that's bonus points for her.

We'll see how he does overnight.

I'm off to sleep. Something I've had very, very little of the last two days.


Wednesday, July 9, 2008


Well, it would see the Cox family curse continues.

Early this morning, I noticed my dog's left cheek looked bigger than his right. Sure enough, a lump. A really large lump. It's actually inside his mouth. It's probably and inch and a half around, growing out of his gum line.

I called the vet as soon as they opened and was in to see the doctor an hour later. They agree- giant lump. He also has a 2nd smaller one on the other side of the mouth.

They said it could be an infection or a couple of different kinds of cancer. He's scheduled for surgery on July 22.

My pup is a 10 year old Boxer. They're quite prone to cancer and he's old. I'm obviously afraid of the worst.

I think it would be wise to stay far, far away from me right now. Typhoid Trish strikes again.


Tuesday, July 8, 2008

Tired Tuesday

Most days I'm really tired.

Some days I'm exhausted to my bones.

Today is the latter.

Robbie is on CPAP today. He was doing fairly well on the high humidity canula, but his oxygen needs just kept creeping up and creeping up, so they wanted to try something else.

The CPAP works well enough. Except that I've given birth to a mouth breather. Those are David's genes, not mine. The trouble with mouth breathing (besides annoying the hell out of your wife) is that when air is pumped into your nose, it simply flows straight out of your mouth. When the point of said air is to inflate your lungs, that's a smidge of a problem.

We had a lovely kangaroo today. Three hours, actually. That was three hours of me holding a finger under his chin and a hand on the back of his head. I hope to regain the feeling in my right hand by sometime next week.

Once we got him back to bed, it was the challenge of keeping his mouth closed again. His evening nurse tied him up "toothache" like. Soft gauze. But my boy was determined. I adjusted the wrapped about 30 times before finally getting it situated.

Just in time for the eye doctor to show up, of course.

So the eye doctor looks at his eyes. He wasn't wordy at all. Essentially he explained before he started that he wasn't looking to see if he was near or far sighted, he wants to see how his eyes are developing. They are premature just like the rest of him. He looked at Robbie for oh.. about 45 seconds. Declared his eyes "Much more mature that [I] expected" and that was pretty much that. So, better than expected. Music to a preemie mom's ears. The eye doctor was on his way.

David was literally falling asleep in the chair so I sent him home. (No sense having two gape mouthed family members in the NICU.) Then it was bath time.

His night nurse tried a swaddle bath. She asked if I wanted to do it. I looked at her like she was crazy. Bath time makes me nervous. He's out of the bed, off his monitors, screaming, and frankly, I don't know how to give a big baby a bath, let alone a tiny, fragile one. I've mastered the sponge bath, but I know nothing of this swaddle bath.

Turns out, it's kinda nice. I have no idea how one person could do it alone anyway, so we did it together. Basically, he got wrapped up in a blanket and sat in a bucket. And he liked it. Or at least, he didn't hate it. Which compared to regular bath time means he liked it. I soaped up a corner of the blanket and washed him down a little at a time. He looked around like he had no clue what was happening, but so far it was okay.

That made two of us.

Afterward, I was putting on a fresh diaper when he vomited.

Let me remind you that he doesn't get food into his stomach. He isn't supposed to HAVE anything to vomit.

It was army green. Even if his tube had pulled up and was emptying into his stomach and not into his intestines, it's breast milk with some fortifiers. It's not green.

I panicked. I asked the obvious question, "Um.. that isn't supposed to be able to happen, right?" She had the look on her face that said no, it isn't, but I'm not quite sure what to say to you so you don't freak out. Which of course, made me freak out. She suctioned his mouth out while I cried.

I asked why it was green. She explained that it looked like bile. That meant very little to me, but sounded bad.

She went to get the nurse practioner. She came back and looked relieved. She explained that the tube they put into him is a bit large so it's very likely slightly blocking the duct from his stomach into his intestines. The bile is his normal stomach secretions and they should just flow downward into his intestines but if the tube is blocking things up a bit, they won't flow right. If he continues to have problems, they can suck out the contents of his stomach to get rid of it. When he was fed through the NG tube, they checked his stomach remains after every feeding. They can't do that with the NJ tube.

Well, things like "should" and "if" and "we think" don't really reassure me. It makes sense, but what if it's something else? What if it's serious? I continued to cry.

She seemed to think I was crying because I didn't believe her. Which, I suppose, was sort of true, but not in that way that meant I thought she was lying. Just that I was afraid they were wrong. All I could do was say that I was as okay as I could be and just worried. And I continued to cry.

Someone handed me a box of kleenex and I felt like an idiot, but I couldn't stop.

Then he threw up again. More bile.

I felt sick myself.

She went back to the NP to get the order to suction his stomach contents.

She came back, fed an NG tube into his nose (remind me again that this ISN'T baby torture?) and pulled out 3cc of bile.

After that, he seemed okay. I finally stopped crying.

We put him back to bed. Of course, then came the challenge of getting his mouth shut again. Once again, he got the toothache-tie-up. He was fussy a bit, but finally fell asleep WITH HIS MOUTH SHUT.

I sat with him a while and watched him sleep. And I cried some more.

The nurse asked about how tired David was and I told her that he doesn't get enough sleep and he doesn't listen to me about going to bed. That's why I'd sent him home. She said "it seems like he misses you."

Yeah. More tears. Mostly because it's true. And I miss him, too. We actually had snuggled up together on Sunday and slept for a while. I couldn't tell you the last time that had happened. Of course, I woke up in a panic because I had to get to the hospital.

When I went to pump, I called him. I told him what she'd said and he said he did. I asked if he understood why I was at the hospital so much and he said of course. "Someone has to look after Robbie." I really love my husband.

I'll say what I said to the nurse- "We'll get through this."

When I got done pumping, I decided to go ahead and go home. It was 10:30 and Robbie was sleeping peacefully.

I got about 10 miles from the hospital when I realized that I'd left without Robbie's laundry.

Normally this wouldn't be a big issue, except that my boy is a world class pooper. He blew out his diaper twice last night. Through his pad and into his snuggli. He was sleeping on his final clean one tonight. And he'd blown out his diaper again already, but fortunately I'd caught it (quite literally- I went to move him and put him hand under his butt and came back with a handful of poop.) before it soaked through his pad into his snuggli.

I called the hospital and told her I was an idiot for leaving it behind. She told me not to worry about it, that they'd manage.

Well, I couldn't live with Robbie just "managing." So of course, I turned around.

When I walked back into the NICU, she scolded me for coming back. But it's my nature. I can't do much for him. Make milk and wash his blankets. I wouldn't want to fail on 50% of the job.

So, now I'm home. The laundry is going. Tomorrow is another day.


Monday, July 7, 2008

Good stuff

Robbie is still off the vent. As of 7:15 tonight, he'd beat his previous record of 36 hours. I'm still not 100% convinced that we're done with the vent. They said his chest X-Ray before they extubated him wasn't really fantastic, but they wanted to try.
He had a pretty quiet day but tonight his O2 needs were up a fair bit and he was less stable than he's been the last few days. I've already told myself that even if they have to reintubate, it's okay. Obviously NOT needing it would be great, but any time off of it is good, so we're doing him a favor with every minute he's without it.

Other than that, there hasn't been much going on with him. He has his 1st eye exam tomorrow. He's at super high risk for ROP (retinopathy of prematurity) but fortunately they usually outgrow it and it is treatable with laser surgery and such. So I'm trying not to be too concerned about it.

Kangarooing without the vent has been amazing, I have to say. To not have to move SUPER slowly, SUPER carefully is great. Being able to move his head a bit so I can really see his face (without the aid of a mirror) is amazing. Hearing his little voice is fantastic.

I do feel guarded, though. I've learned that reveling too much in the highs makes the lows especially crushing. But for now, things are going well.

In other good news, I got my hands on my MRI report today. It would seem I DON'T HAVE BRAIN CANCER.

Findings: The ventricles are normal in size & position. There is no midline shift, mass effect, hemorrhage or abnormal enhancements. Parenchymal signal is normal. Midline structures and posterior fossa are unremarkable. Vascular flow-voids are normal. Mastoid air cells and paranasal sinuses are well-aerated. There is prominent CSF along the coronal sutures bilaterally, slightly larger on the right. There is no associated signal abnormality or enhancement. This is presumably a normal anatomic variant and is unlikely to represent a focal pathologic process.


1. Unremarkable brain MRI.

This, of course, doesn't explain the head numbness (which I really thought was improving, but tonight seems to be tingling weirdly again) but I'm celebrating no tumors. I just have a weird shaped head. I always knew my brain was a little twisted. Now I have medical proof.

And, in what I think some of YOU will call good news- I have pictures!

Robbies "home"

Pre-Extubation pictures:

Mommy & Daddy give me a bath:

Sleeping baby

No more vent:

Someone tell Mommy that 2lb babies can't have chubby cheeks. She doesn't believe me.

Snuggle time without vents & tape!

What is going ON?

I'm free!

Oops, I think I farted:

I think I like this thing they call a paci