Helpless

What do you do when your baby, who can only breathe through one nostril due to a congenital defect, becomes so congested that her own snorting won't let her sleep? And then what do you do when you hold her to try and give her some comfort and relief and she throws up and starts to aspirate on her own vomit?

What do you do when your child is in so much distress, and nothing you do makes it any better? When you know that if your child didn't have so many other complications this wouldn't be nearly as scary?

She did finally get some relief. But she's still really congested. I hate worrying family and friends - I almost feel like they're going to get tired of hearing about it - so I don't feel like reaching out to them right now. That's probably really silly and stupid of me.

More than anything, I just wish the wee one could be healthy so that she didn't have to endure all this. It makes me feel so completely helpless.

I hate feeling self pity, but I just can't shake the tears away right now.

Oh. Man.

So I started running again. I try to run a few times a week in the morning before work. Today is one of my running days.

I JUST noticed that I've had my shirt on BACKWARDS all morning (ever since I changed into my work clothes after my run this morning).

I don't know what's worse - the fact that I didn't notice until now, or that nobody else mentioned it to me...

Either people around here are way too polite, or really, really unobservant (which is bad for scientists!).

It's official

Inspiration for this post brought to you by Sciencemama's post on officially being a mom.

I've had a few moments where I've thought to myself, "Okay, it's official, I'm a mom."

Among them:

• being so completely covered in baby barf that even my underwear were soaked (how such a tiny little tummy can hold so much volume is beyond me!)
• showering and changing after said barf bath only to then be "stamped" with baby poop as I carry the wee one to her change table
• being very excited by the above poop because wee one hadn't pooped in a loooooong time and I was getting a little concerned
• noticing that the wee one smells a little cheesy before baths, and growing to like the scent (it's almost intoxicating now - gross as that sounds!)

I've got a few more posts semi-composed, but not quite finished yet - so stay tuned!

In the mean time, please send some kind words and support Sciencemama's way - her family's home was just flooded, and it's a devastating experience. She's being incredibly strong, but I know it can't be easy. Hang in there, Sciencemama!

Working Mama and Mr. Mom

So my maternity leave ended and I returned to work.

I have to say, I was pleasantly surprised at how well I handled the transition. I actually feel guilty for how much I'm enjoying being back at work. I think there are a number of factors coming into play here:

1. Mr. Daybyday is doing the Mr. Mom thing as a stay at home dad, which makes it a little easier to leave the Wee One in the morning (I get to call home and "talk" to her whenever I want)
2. I think I might actually enjoy my work more than I had realized (gasp!)
3. I now give myself permission to (or at least feel less guilty when I do) socialize, exercise, and pursue my interests while I'm at work. I guess when I was home with the Wee One I would feel guilty for doing any of those things, unless she was napping - but then there were other things that HAD to be done (like laundry, cooking, cleaning, eating, showering, etc). Mr. Daybyday seems to have a much better handle on keeping himself "balanced" while being a stay at home papa.
4. Also, it doesn't hurt that I get to move into a brand spanking new building and office (with a new computer too!) - makes work much more appealing than with my previous diggs.

I also seem to have forgotten some of my previous worries about work. Some of the things that used to bother me, little insecurities, etc.. they just don't seem like such a big deal anymore. I'm constantly surprised at the confidence I seem to have now. I knew that the Wee One would constantly be teaching me things, and I guess putting things in perspective is one of them. A stint in the NICU, followed by ongoing medical issues tends to make the small stuff seem... well, small.

So here I am, back at work, and in much better shape (mentally and emotionally - physically will take a bit longer) than I had anticipated just a few short weeks ago.

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So I should probably end the post on a happy note like that, but I do want to share with you (cause you've all been so wonderful and supportive) that the Wee One will be having an MRI tomorrow. They'll have to sedate her for it. I hate that they'll have to sedate her. It means placing an IV, and she's such a hard stick. And I'm so worried that with her respiratory issues that sedation will be risky. I just hate that she has to undergo any more procedures. But a few weeks ago she developed this growth on the top of her head. At first they thought it was just a vascular birthmark (a hemangioma, to be specific), and those usually just stop growing on their own at around 1 year of age, and then regress and disappear within a few years after that. BUT its growth since has made the neurosurgeon worry. He says it is firmer than a hemangioma, and he is worried that since the skin is pulled so tight over the growth, and so thin, that she could easily get a scratch there and it could get infected (and an infection anywhere near her shunt would require about a month of hospitalization, shunt removal, a temporary external drain during a course of antibiotics, and then finally another surgery to place a new shunt - all in all ,VERY UNPLEASANT, and something to avoid at all costs).

So, here's hoping that tomorrow's MRI reveals the growth to be a simple cyst that can be easily removed (which is what her neurosurgeon guesses the growth to be).

I know that given all of the rather serious congenital problems the wee one has had, she's come through beautifully and we should be happy - but I just can't help feeling that she really deserves to catch a good break, you know? Luckily, she seems unaffected by all of this, and is still an adorably happy little girl. I've even got several videos of her up on youtube now (email me if you'd like to see them - I'd rather not post the link here in order to maintain some semblance of anonymity).

Oh! and her latest achievement? She can now hold her head up while she's on her tummy! Hurrah!

Pictures, pictures, pictures, and a little bit of text

Ummm... it's been over a month (!) since I last posted an update here. And although there have certainly been plenty of blogworthy events to write about, I still can't manage to put together much in the form of a coherent post. So instead, I give you random bullets of updates, and many many pictures of the wee one!

I have less than two weeks left of my maternity leave... booooo.... I honestly don't know how I'm going to function being away from the wee one for so many hours of the day!

She's starting to smile socially now!


And she LOVES her bath towels.

She's starting to gain weight as she should be (about an ounce a day) - at nearly four months old, she's finally 9 pounds! It makes me so happy that she's growing - but a little sad too. She's outgrowing her preemie and newborn clothes, and for some reason, it's bitter sweet.

She's discovering her hands! And that she can put them in her mouth! And that they taste good!

She's had a rough bout with acid reflux (which really didn't help her gain weight) - so we bought this neat wedge that has a harness and holds her at a 30 degree angle after each feeding. We still cover the harness with a blanket because when she does end up throwing up, it saves us from having to launder the harness every time. But the end result is that it looks like we've velcro'd the Wee One to this wedge!

Her physical therapist suggested that we help give the Wee One some extra head support while she's on the wedge - to keep her head in midline. She seems to be very content with the entire contraption!

She also loves playing with her grandma - especially using her feet!

Her hair is also getting lighter (and it's a little curly right after a bath).


She's got two bottom teeth that I can feel underneath her gums. She loves it when I massage them.

She's my hero - and I just can't get enough of her!



And she is now making vocalizations! We were getting worried that her vocal chords had been damaged from the intubation while in the NICU - but now we have entire conversations of grunts and coos!

On life after the NICU (part 1)

I said in an earlier post that I had some thoughts brewing for a post about transitioning from being a NICU mom, to just being a mom... and I think I finally have some time, and the right emotional state of mind to actually write it.

As a quick aside, please forgive me if my writing is less coherent than usual - along with the spit up that I just noticed on the sleeve of my shirt (poor wee one has been suffering from reflux), my decreased brain function as of late is also just par for the course.

So I'm beginning to realize more and more that my "birth" experience was... pretty sad. I mean, I still got my wonderful and amazing little girl out of the whole deal, so that is fantastic, but there were no balloons saying "Congratulations!" and no flowers, no visitors... None of the typical things you'd expect to see in a hospital room on the maternity ward floor. Aside from Mr. Daybyday, there was just the slew of hospital staff that would come in at all hours to poke and prod me.

I guess I sort of feel almost lucky that I knew ahead of time that the wee one would probably need to spend some time in the NICU because of the hydrocephalus that they detected while I was still pregnant. Otherwise I can only imagine how shocked and completely devastated I would have felt for my baby to be taken away from me, and hooked up to so many machines and monitors, barely being allowed to hold her, or even touch her for the first month of her life.

It was hard enough as it was, with the little preparation I had. But I don't think anything can really prepare you for the heartache of having your baby in the NICU.

You feel helpless. And as a first time parent, I felt so lost, and had to ask permission to interact with my own child. It's an odd dynamic that evolves between the parents and NICU nuring staff. At least for me it was - I didn't know what to do, other than the longing I had to touch and hold my baby girl - some of the nurses would go out of their way to let us hold her (which is quite the ordeal when a baby has so many things attached to them!) and it always felt like a big deal. And it WAS a big deal.

But for so many other parents, being able to hold your own newborn is just a given. It's not something they need permission to do.

Being a NICU mom instills a sense that you'll never take the little things like that for granted.

It also made the transition home extremely difficult.

I remember the day the wee one was discharged. I was told the day before that they might discharge her the next day, and to call the NICU after the doctors finished rounds to find out if the decision had been made. Of course I barely slept that night - I was SOOO anxious, and also trying not to set myself up for disappointment if they didn't discharge her.

Finally rounds were done and I called. I was devastated when the nurse told me that they hadn't ordered the discharge. She could tell that I was in tears, and tried to comfort me by saying that she'd more than likely be discharged the following day.

So we headed over to the NICU to spend the day with wee one next to her NICU crib. And just before lunch we got the news! She was going to be discharged afterall!

Skip to the part where we load the wee one into the car in her car seat. Hop in the car ourselves, and close the doors. "DRIVE! Quick, before they change their minds!" I yelled to Mr. Daybyday.

The whole ride home, I just remember thinking "Oh my goodness. We're out of the hospital. We're leaving. Wee one has no monitors hooked up to her anymore."

And I felt both joyful, and terrified.

When we got home I had a bit of a meltdown. Waterworks, phone calls to my mom, complete terror. Suddenly I had no nurses or doctors or monitors to rely on for help! I sort of knew my baby and how she behaved - but I'd never been allowed to stay with her one-on-one for a whole day. She was still recovering from her surgeries. She had only been off IV fluids for a day. It was even more overwhelming (at the time) than when she was in the NICU (at least then I could depend on the competence of the NICU staff to make sure my baby was fine!).

But as my mom assured me, as time went on, I started to mellow, and gained (very slowly) confidence in my ability to be the wee one's care giver.

But it wasn't easy giving up the dependence I hadn't even realized I had developed on the nurses and monitors. I'm very proud of how far I've come - I really wasn't sure I had it in me.

Now, instead of wanting to get the hell out of there and never look back, I am actually looking forward to visiting the NICU and seeing some of the nurses and doctors who helped the wee one (and me!) during her stay in their care. Because this time it will be as a proud mamma, showing off her amazing little girl - and because I know they'll be just as proud of us both.

ground hog day... sort of

You know that movie where the guy keeps re-living the same day all over again? Well that's sort of what my life feels like right now, except instead of a whole day repeating, it's a 3 hour interval.

Every three hours (roughly) we do pretty much the same routine: diaper change, feed the wee one, pump, feed the mommy (or other neccessary activities, like showering, laundry, feed the kitties, etc), and sleep if I'm lucky.

But I've finally figured out that I can multitask whilst pumping! Hence this post

... we interupt this post for the following message from the wee one: "enhg. enhg. UH!" ...


And I'm back (the wee one was fussing a bit, so I had to check on her - she's fine, she just had to toot)










So anyway, things are going relatively well, considering. We've only had one trip to the ER so far in the three weeks since she's been home. She wasn't gaining weight very well (she lost an ounce in each of the last two weeks, and came down with a cold, the poor thing!) - but just today (a day after I started writing this post - yeah, I'm getting used to getting things done in installments) she had another check up and I'm SOOOOO happy to report that she gained a whole 8 ounces in the last week! Woohoo!



I'll have to do a proper update another time (I've got some posts in mind about the transition from the NICU to home, and about some of the other issues that have arisen) - but for now, I thought I'd just let y'all know that I'm still here, and the wee one is still charming the pants off us :)