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 :)

The long journey home

We FINALLY got to take our little girl home!

Thank-you all for the thoughtful and supportive comments - I can't tell you how much the power of positive thinking and reassurance made a difference (and continue to make a difference) in my mental and emotional state during the past few weeks.

The wee one did end up getting surgery to place a shunt for the hydrocephalus. This amazing little girl endured two major surgeries within the first few weeks of her life, and has come out just as sweet as ever. Her fortitude amazes me.

Now that we finally have her home, a new journey begins (full of lots of follow up appointments with specialists!). We haven't even had her home for a full 24 hours yet, so we are still adjusting, and I doubt I'll have much time to post here in the near future, but I will try to let you all know how we're doing from time to time :)

And to end with, I will leave you with another picture of the wee one, in her daddy's arms (this time with eyes open for extra cuteness!).

The life of a NICU mom

It's exhausting.

It's emotional.

It's overwhelming.

But the wee one is a superstar! She had surgery on Thursday to repair the diaphragmatic hernia, and she's done so well! The doctors and nurses keep telling us how great she is doing, considering how sick most babies with diaphragmatic hernia's usually are. She didn't even need to go on ECMO (a heart and lung by-pass system that they typically need).

AND, she might finally get to come off the ventilator tomorrow!!! Then we'll be able to hear her again (haven't heard her since her first few cries in the delivery room!).

We've been lucky enough to be allowed to hold her twice - and both times it was heaven.

I just love her so much it makes me cry. I just can't wait until we can take her home with us. Day by day she gets stronger. So keep those positive vibes coming our way, because they seem to be working! :)

A wee update...

Thank-you all for your comments and support!



Here is an updated picture of the wee one - she is getting stronger! The neonatologist was very optimistic today, and she said that our wee one is looking fantastic - so of course we were very relieved to hear that! She will have to undergo surgery - to help fix her diaphragm, and then hopefully her wee lungs will get stronger and no longer need any assistance to keep her breathing (she can breathe on her own, but does much better with help from the ventilator). And it looks like although she has a larger head, they don't think she has hydrocephalus afterall! But of course, they'll look into that more after the breathing issue is fixed. One thing at a time. But overall, very good news :)

She's Here!

Just a quick update as i'm still pretty out of it myself... the wee one arrived just before noon. She had a few more complications than anticipated but she's a fighter. Heres a picture of her (the tape on her face is to hold a tube to help with her breathing). Feel free to send good thoughts our way so that she can get strong and healthy as quickly as possible.

Let the countdown begin!

We finally have a date scheduled for the wee one's delivery!

Less than 4 days from now, this little wiggle worm will be making her grand debut via scheduled c-section. At our most recent appointment the doctor decided that the wee one's head is now measuring too large to attempt a regular delivery, or in his words "that head ain't going through your pelvis" - so c-section it is!

I was partly relieved that I won't have to attempt a regular delivery, but also scared about having to go through surgery. I guess there is no "fun" way to birth a baby.

On the positive side of things, however, yesterday marked the day that the wee one became "full term!" I find that incredible considering how I had been told earlier in the pregnancy that she would more than likely be born prematurely because of the hydrocephalus diagnosis. But now we've made it to the 37 week mark (37 weeks is considered full term, but the due date is calculated at 40 weeks - and most babies are born within two weeks of their due dates). I hope this means less time in the NICU, and more time with Mr. Daybyday and I!

And because I'm all emotional and cranky lately, I will also share with you that I cried during an episode of the tv show 24 (I've been netflix'ing the series, and am in season 2). Mr. Daybyday started to tease me, but then stopped once he realized that the same elevated hormones that were making me cry would probably make me violent if he continued.

The stretch marks continue to stretch (they can be downright painful!). And now my pelvic bone (at least I think that's what it is) is starting to cause me pain when I try to walk. I am really on bedrest now. Luckily Mr. Daybyday is home with me - so I have little need, except for uncomfortable waddles to the bathroom and back, to leave my post.

But the poor kitties - they want someone to PLAY with them, and I'm home all the time, but I just can't go fetching their toys. They need to learn to bring their toys back to me after I toss them.

Ah well - only a few more days until the real excitment begins for all of us in the daybyday household!