Wednesday, August 31, 2011

There's No Place Like...


That's right folks. Kaia came to live at our humble abode on Sunday, August 28th, Day 50 of life (aka, a 7 week plus 1 day stay in the NICU). She came home weighing 2735 grams (which I think is like 6 lbs 1 oz).

And so far it's been...well, I don't want to say 'rough', but I will admit it hasn't been all sunshine and roses. Don't get me wrong, she is wonderful and great and I'm so glad to have her home and be able to function more like a normal family, whose members all live under one roof...but Kaia has come home with some feeding issues. These feeding issues have kept both Brian and I awake for the better part of 3 days. And people, let me tell you, no baby is cute after 3 days with barely any sleep. And the 'small' problem of feeding seems like a HUGE deal at 3 am when you're afraid your baby is not getting enough milk.

Let's go back to last week, Wednesday. Kaia had been off the low flow for almost a week at that point and when I arrived at the NICU after my morning dental appointment (No cavities, I'm such a superstar), the staff informed me that Kaia had been doing well with her feeds overnight. Her nurse then said cheerily "so you want to take her home?!" Now, had I been there to witness this stellar feeding behaviour perhaps my answer would have been a resounding "YES"...but since I had yet to witness Kaia take either a full bottle or a full breast feed, I was somewhat hesitant. She didn't seem ready to consistently take all the milk she needed to without needing to be tube fed. Plus we hadn't mastered breastfeeding yet, and I really wanted to get that skill under her belt. However, if she could feed well for the nurses...that would mean she could do it for us too right?

The answer, as we found out over the next few days, was 'sometimes'. I stayed over in the care by parent room on Thursday night, doing all the care for Kaia. The plan was that Brian would then stay over Friday with us both and we'd go home Saturday. Well Thursday night was an epic failure. Kaia was NOT taking her full feeding volumes, either by bottle or by breast. And we were both getting massively frustrated. I didn't sleep all night. So Friday afternoon I told the nurses that I didn't think she was ready, that I was going to go home, get some sleep and we'd try again Saturday night with both Brian and I there to do her cares. It felt awful heading home without her. Her issue was that she would latch at the breast, but not suck for long. She would take a bottle but start choking and coughing and occasionally turn a bit blue (SCARY AS FUCK when you have no resuscitation equipment sitting beside the baby's bed). I didn't feel she was ready, and with no sleep I didn't feel equipped to handle another night of frustration.

So Saturday rolls around and after a good night's sleep both Brian and I show up to the NICU and are informed that Kaia has done wonderfully bottle feeding overnight and they really do think she's ready for home. With both of us there to spell each other off and a great nurse to (figuratively) hold our hands, Saturday night went 'okay'. Kaia seemed to feed a bit better and her nurse worked with us coaching us on breastfeeding. It seemed to help and we all got a bit of sleep that night. So Sunday morning we packed up our stuff, waived good bye to the nurses and headed out the door.

To home...where Kaia's feeding behaviour has been ALL over the place for the last 3 days. Sometimes she seems to do well on the breast, other times we give in and are practically BEGGING her with a bottle to PLEASE JUST TAKE SOME!!! It's been scary and nerve racking and I hate that feeding has become such an issue.

So I wasn't surprised at her two day post discharge weigh in yesterday to find she had only gained 10 grams in two days. Generally they like babies to gain between 20-30 grams per Kaia was behind, by quite a bit. The lactation consultant came in and watched me breastfeed (good position, good latch, good suck), but acknowledged that Kaia did not suck for long enough and seemed to tire quickly. She also urged us to stay away from bottles if we wanted to exclusively breastfeed...bottles deliver milk about 5x faster than the breast and some babies, learning they don't have to work so hard at a bottle, will just clamp down, refuse the breast and hold out for the bottle. Ah humans...programed from birth to take the easy way out. Awesome.

With the lactation consultants help we have been doing an alternate feeding method over this last day: finger feeding. Finger feeding is slower than bottle feeding so she won't choke, and requires the sucking action of breastfeeding so she learns she has to work to eat. It's where you have a bottle of milk and a tube that comes from that bottle to lay up against your finger. You place the finger and the tube in the baby's mouth and the baby sucks, basically drawing milk up the tube like a straw, with your finger acting as a support to latch on to. It has been WORKING!!! And since last night Kaia has been taking around about her 'full feed' volume of 55 mls every 3 hours and sleeping in between and waking up for feeds! Thank goodness!

The process however is quite labour intensive. I continue to have to pump (crummy!!), pumping stuff needs to be washed, finger feeding bottles and tubes have to be washed and oh yeah, Kaia needs to get fed and her bum changed somewhere in there too. The whole process takes anywhere from an hour or two, so sleep is a big issue. It is SO labour intensive, and Brian and I are SO tired from our 3 days of lack of sleep, that we took shifts last night. He stayed awake and fed her from 11 pm until 4 am and then I woke up and let him go to bed until noon. Then I had a nap when he got up. Thankfully Brian is taking some of my parental leave time (4 weeks) so he'll be around to help me for awhile.

Which is why I have the energy to update you today! We are going to persist with the finger feeding for a few days, and will go to visit a lactation consultant on Friday to get some tips about switching back to breastfeeding. We also have another 'weight check' on Saturday, so I'm hoping to pull in some BIG numbers that day.

It's been hard to just 'enjoy' her now that she's home, with the lack of sleep and the stress of trying to get her to eat, but I hope that soon we'll get into a better routine, Kaia will be strong enough to breastfeed consistently and life will be good again.

Thanks for caring about us everyone. It was nice to see that you'd noticed my absence. Sorry it's been so long between updates. I'll try to do better in the future (sleep permitting).

If you have some baby war stories you'd like to share I'd love to read them! It's hard to keep sight of the fact that things do improve when you're 'in the trenches'.

Tuesday, August 16, 2011


5 weeks + a couple days

It looks like Babies R Us exploded and everything ended up in my dining room.

HA! But seriously...

Saturday was my baby shower. It was beautiful and lovely and my family and best friend worked very hard to put it together for me and I completely appreciate it. We got a lot of wonderful things, which will be very helpful when Kaia comes home. In case you are wondering, I did not read out my post from a couple of days ago, but I did make a slide show of pictures from Kaia's life so far. I think it showed nicely how adorable she is and how big she's gotten, but also the struggles she has had. I included a picture of her intubated, pictures of her with her CPAP on, pictures of her with her nasal prongs and pictures of her in her harness. I hope it helped people to understand that while she's a 'real baby' she's also had quite a few challenges in her short life.

Some people just didn't get it though. A few out of town relatives were asking could they come visit her? First of all, I feel like I hardly get to spend enough time with her even though I'm at the hospital twice a day. A 'regular' new mom would probably spend 23 1/2 hours a day with her new baby. I maybe get 4. I don't really want to spend the precious time that I have with her sharing it with relatives beyond immediate family or extremly close friends (and even those people I like to keep visits short). Secondly, when I'm with her, I'm usually there for feeding time. Since we are new at this and Kaia is still not a 'pop on the boob' kind of baby...I don't really want an audience. I think I will eventually get to the point where I can breastfeed in front of people, but we aren't there yet. Third, the NICU is small and crowded and already over stimulating enough. Kaia doesn't need extra people fussing around her, trying to touch her (GERMS!!!) or talking loudly. I hope this came across after they watched the slide show...but maybe not.

Aidan was only mentioned once by a particularly sensitive aunt. That was tough, as I felt the memory of him all around. The anniversary of his due date was yesterday, and here I was two days before that celebrating the birth of his sister. Had things gone differently, it would have been me throwing the party for my one year old son. At one point when opening gifts I looked around at the sea of pink and thought 'I should have been doing this last year...and instead I would have had a sea of blue'. It was an odd feeling. I am thrilled that people love Kaia so much, and are happy for us, but I feel cheated on Aidan's behalf. He should have been 'showered' with love too.

Kaia has made some progress in the last couple of days in that she is off oxygen for the most part. She's still wearing the nasal prongs but only room air (21% oxygen) is coming out of it at 25 mls a minute (why she needs this to help prevent her from desatting is beyond's literally the same air that you and I are breathing being blown up her nose!!!). She still drops her sats into the 80s when bearing down (and it's super obvious when she's doing this as her face goes TOMATO red), but she seems better at recovering on her own. I wish she was more alert and active for feeds, but she's still only able to orally feed a few times a day. She's just too tired to do it all the time.

I've also discovered one of the favourite things people like to tell you when you have a new baby is "time goes by so fast!!! You blink and they have grown up!" Um...really? Cuz I'm feeling like this last 5 weeks have gone by SO SLOWLY!!! Like progress is inching along. I will WELCOME the day when Kaia is the size of a full term baby and can do full term baby things. At this point it still seems hard to imagine that one day it will FINALLY be time for her to come home. I can't believe it's still almost 3 weeks away from Kaia's due date. Honestly...never say "time flies" to an NICU mom. For her, time is dragging.

But we're getting day...soon...

Monday, August 15, 2011

In another reality

5 weeks + 2 days

A year ago, I should have given birth to a healthy little boy named Aidan. He should have been between 6 and 8 lbs and cried immediately. He should have been wrapped in a swaddling blanket and been handed to me by his Dad. We should have marvelled over the colour of his eyes and the colour of his hair and all the cute little noises he makes. We should have spent a few days in the hospital, with me teaching Brian how to bath him and change him and I should have been practicing breastfeeding. Then, on day 2 or 3 after everyone was happy with his progress and happy with my heart function we should have dressed him in his 'going home outfit', popped him in his car seat and driven off into the sunset.

Maybe in some other reality, one that is different from this, I have a one year old named Aidan.

But what if in that reality there is no Kaia...?

I wish I could live in the one where I have both.

How nice it would be to kiss both my children goodnight.

Friday, August 12, 2011

Many Faces

One day less than 5 weeks.

So tomorrow is my baby shower with all my friends and family. I'm looking forward to seeing everyone and getting 'showered' with gifts for Kaia. But I know everyone will be asking how Kaia is doing? How am I doing? How is Brian doing? And I'm not exactly sure how to answer that in any 'short' version, because this is my life:

I had a baby (Happy face)
After a traumatic pregnancy where we thought she might die (Sad face)
Thankfully, she lived (Happy face)
But she's still in the NICU (Sad face)
She's doing pretty well though (Happy face)
But she's still needing oxygen (Sad face)
She's starting to do better at breastfeeding (Happy face)
But she will be in a Pavlik harness for months as she has congenital hip dysplasia (Sad face)
Her hip is fixable though (Happy face)
Although she might need surgery on it at some point (Sad face)
She's cute as a button and my heart sings when I see her (Happy face)
But I'm a bit frusterated and down that she's not home yet (Sad face)
Whatever happens though, I'm her mom and I feel very lucky to have her (Happy face)

Don't forget though, Kaia is not my first baby (Confused face?)
Kaia has a big brother, named Aidan (Happy face)
He was born prematurely last year and he died (Sad face)
We miss him very much (Cry face)
Monday will be one year since his due date (Sad face)
I should have a one year old, but I don't (Depressed face)

Also, my grandmother just died (Sad face)
She was old and had lived a long, fairly healthy, fairly happy life (Happy face)
We miss her very much (Sad face)
Kaia is her first (living) great-grand child (Happy face)
But they never got to meet (Sad face)

Brian and I are doing well (Happy face)
After 15 weeks of bed rest... (Sad face)
I am feeling pretty good and am happy to be living at home again (Happy face)
Of course, the hospital bill arrived our house the other day (Sad face)
While I'm glad I had the private room at the hospital as it made a huge difference... (Happy face)
It cost us over $2000 (!!! Sad face)
Our girl was worth it though (Happy face)
Now she just needs to learn to eat and get off oxygen so she can come home (Stressed face)
We have waited so long for her and we have so much love to give (Happy face)
We can't wait until she is home for good! (Happy, Excited, Joyful face).

So how are we doing? Um, short answer? We're okay. (Although I might have some nauseous face after the roller coaster ride that is my life).

Wednesday, August 10, 2011

Emotionally Damaged

One month and a few days

So Kaia is still chugging away in the hospital. We are still working on breast feeding, still working on getting off the oxygen...just like we have been for the last two weeks. Not that I'm rushing her...but it would be nice to get at least one of the two of those things on the 'accomplished!' list. I allowed them to give her a bottle last night for the first time, just to see how she'd do. She took 25 mls before pooping out and she needs about 50 for a full feed. She's also not interested in waking up to feed every 3 hours yet, so we are only attempting oral feeds 2-3x a day. She latches well (with a nipple shield), so that's a plus. She just doesn't have the strength or energy to take a whole feed.

Kaia's also still on 25 to 50 mls of oxygen, but seems to be holding steady on that (more often in 25mls rather than 50 the last couple of days). I would be willing for her to come home on oxygen...but she would have to get feeding 'ticked' off the list first. She was fitted in her Pavlik harness last week. She's been a bit constipated since then so while it's great that it's hopefully pulling her legs into a position to fix her dislocated hip, it's restricting her leg motion enough that she can't stretch and for some reason it seems to be making her all 'bunged' up. *Sigh*. If it's not one thing it's another.

Brian and I are also finding ourselves somewhat 'emotionally damaged' to use a phrase from the movie we saw on the weekend (Friends with Benefits...funny, go see it if you are looking for a good romantic comedy). Brian's birthday was this past Monday and over his 'birthday weekend' he just didn't seem to be in the mood. He was down and kind of grumpy. When I asked him 'what gives?' his response was that he honestly didn't know. He was sad and couldn't tell me why. He explained "I'm just not as happy as I used to be".

I get it. I do. Before early 2010 he was a happier guy. More carefree. More positive. The past two years have really taken a toll. We are finally experiencing some happy with Kaia...but it's still hard and stressful having a baby in the NICU. We also have some worries about raising a former preemie, and one that might require hip surgery in the coming year, no less. We are massively grateful for her, don't get me wrong...but Kaia is only herself. She cannot 'make up' for the loss of Aidan (no 'next' baby could) and the stress we have lived under these last months (or years if you want to look at it that way), lingers.

It's weird. You would think after all we've been through that life's troubles or unknowns would bother us less. I mean, really, Kaia's here...she's done AMAZINGLY well considering what our initial prognosis was. I'm healthy and recovering well after the C-section. I'm pumping huge quantities of milk (1L a day or more) so Kaia is being fed well. My awesome online friends (that's you!!!) helped me buy the stroller I've always wanted and it's sitting in my living room ready for Kaia's arrival. My 'real life' baby shower is this weekend and I'm sure I'm (or rather Kaia...) is going to be spoiled with presents from all my friends and family. You'd think nothing could bother us...

And yet I find myself maybe once a week having a 'bad' day. Where I don't sleep well. I'm frustrated and down. Where stupid things bother me. Where I worry about money, worry about Kaia excessively, worry about my extended family. Feel stressed by Kaia's medical issues. You'd think none of these things would touch me at this point. I got what I wanted, and I'm over the moon grateful. Why so glum?

I thought about this last year after Aidan died. How you'd think having a dead baby would make you kind of immune to all the other disappointments or difficulties in life. At that point you KNOW there are worse things, so why get all upset over something comparatively small? You'd think those things wouldn't matter. But they do. Almost more so. Somehow, in the short term at least, big stresses in life magnifies all of life's other struggles. Hence my cry fest in June last year when I couldn't go see the new Twilight movie on the day it came out (pathetic I know).

So, now I find out, on the flip side, that when you finally get that longed for baby after a massive up hill battle, while it is wonderful and great and she is awesome and so loved...the stress of the past and the stress of a new baby doesn't magically melt away either. The scars are still there. Comparatively small things are once again magnified. Hence, yesterday at the end of a bad day, when I got out of the car and scratched myself on my neighbours rose bush thorn, it was the last straw and I broke down crying (I know, I'm such a baby).

I know someday, probably sooner than I expect, Brian and I won't feel quite so emotionally damaged. Things will roll off our backs more easily. The stresses of every day life won't seem so monumental. We will be more centered and things will just 'flow', or at least not feel so stressful.

It's coming. I know it is.

We just have to be patient.

Does this ring true for you too?

Wednesday, August 3, 2011

Life Goes On

Day 26

Sorry I haven't been getting updates on here as regularly as I would like. It's been a bit of a hectic week. The visitation and funeral for my Grama was yesterday and today. It was nice to see people I have known for years but haven't seen in awhile. It was amazing how many had heard of Kaia and were obviously thrilled to learn that she was alive and doing well. I wish she could have been 'present' (not that a newborn would be the best guest at a quiet funeral), but it would have been fun to show her off 'for real' and not just in photos.

As we are approaching 4 weeks out from Kaia's birth I'm getting more and more anxious for her to come home. She's more interactive and responsive and it sucks leaving her at the hospital each day. I realize it could be awhile longer, but as she gets bigger and bigger (almost 4 lbs 15 oz!), it's easier to picture her as a 'real' baby who lives with us and not a 'preemie' who lives at the hospital. She's starting to have some chub on her cheeks and she's definitely longer than when she was born. She fits into preemie clothing now, so I've had fun picking out outfits that will fit her for all of a week or two before she gets too big to wear them. She's still needing a bit of oxygen, but seems to be better at keeping her sats up and doesn't 'dip' as much. Her breathing also seems a *wee* bit slower than it did last week, so I'm hopeful that's a sign of easy breathing to come (soon please?!!)

I must admit, I'm anxious for her to come home not just for her sake (healthier, bigger, stronger...good to go home!)...but for ours. Cuz' holy is EXHAUSTING having a kid in the hospital. I constantly feel like I should be somewhere else. When I wake up in the morning, I want to hurry through pumping, showering, dressing and get my butt to the hospital...but WAIT there is housework and chores to do. So when I get to the hospital and see Kaia, I'm happy...but WAIT it's feeding time and I have to try to breastfeed (which is not progressing as quickly as I had hoped...but I'm sticking with it). Then I snuggle her for awhile (best part of the day)...but WAIT now it's time to pump again, and then I get hungry and must find food...but then, oh no, look at the time, it's time to pump again... So then I get back on the bus, head home, make dinner...pump some more x 3, then go to sleep, wake up x2 overnight and pump...then wake up for a third time and do it all again. Whew!

The inefficiency of pumping bothers me. Why can't I just sit every morning, throw on a good movie and pump for like 2 hours straight? It would be so great if I could get all my day's milk in one go. Think of the time I'd save!!! Having to stop every 3 hours for 20 minutes at a time and attach myself to plastic bits which I then have to wash afterwards (I have dish pan hands!!), is so tiring. To feed Kaia directly will be more fun and satisfying and definitely more portable as I won't have to plug her into to an electric socket to get her to milk me. To give you an idea of my life right now: Brian and I usually are NEVER late for anything. We are almost always the first ones to show up at any gathering...but today, (BECAUSE OF PUMPING), we were the absolute LAST people to arrive before the funeral started. Almost late to my Grama's funeral because of my embarrassing.

We are also busy as we are trying to get as many things done prior to Kaia's arrival home that we can. Most people do these sorts of things in the last 20 weeks of their pregnancies, but since we were a little busy worrying about our child's survival while I was pregnant, we are trying to get them all crammed in now. We have acquired many baby items including a car seat, crib mattress, baby clothes, stroller (THANK YOU EVERYONE WHO CONTRIBUTED...I will do a post specifically about this item very soon, I promise), and bedding set. Others are on order including Kaia's bed room furniture. We have made a registry for a lot of other stuff and my 'real life' baby shower is planned for August 13th.

In all the 'happy' that has been going on with us, there have been a few down moments when I reflect that I should have been doing all of this last year for Aidan. My uncle introduced me to someone at the visitation last night as 'his niece who just had her first baby'. Um...not exactly...but what was I going to say at that point? Funerals are places people feel comfortable expressing their condolences, but feel much better saying "I'm sorry about your (85 year old) Grama (who had Alzheimer's, was almost blind, deaf and had a broken hip)", then they do when you say "Oh, no, Kaia's not my first first baby died last year at less than an hour old". People have more trouble with that one.

But I can't blame my uncle for his slip. You see, I've done it too.

The other week I was at the hair dressers get a much needed cut. As I was sitting down in the chair to have my hair washed, the hair dresser was telling me all about her son's girlfriend who is due with her first grandchild in December. She was looking forward to the "gender ultrasound" planned for later that week and she was guessing it was a girl. With all this talk, I shouldn't have been surprised (but I was), that she commented on my baby pooch and asked "are you expecting too?" (note: way to make a postpartum woman feel like shit...tell her she looks pregnant. If her baby is healthy and alive, it makes her feel fat. If her baby is dead, it makes her feel fat and depressed). So I told her about Kaia, and how she's in the NICU, but doing well etc. Then the woman asked the dreaded "is she your first?", and I responded in the affirmative.

In that moment I didn't really feel badly about doing so. I didn't really feel in the mood to 'share'. I'm not a regular customer of this woman's and she never saw me pregnant with either Aidan or Kaia, so it's not like she'll ever call me on it. Most of all I didn't really feel like yelling Aidan's story over the noise of running water and blow dryers. It's just not that kind of story. Plus it seems terrible to share your story of babylost-ness with someone who has just told you how excited they are to meet their new bundle of joy. Buzz kill, much?

But then something happened...

I'm not sure if it was me sharing that Kaia was in the NICU or what, but the next thing out of the hairdressers mouth is "My daughter-in-law's best friend was due this week. She went to the hospital and the doctor sent her home saying she wasn't ready to deliver yet. So she waited over the weekend and then she woke up and said she felt different..."

Oh shit...I know what is coming next. I've heard this story dozens of times in the past year...
And sure enough...

"...and she went to the hospital and her baby was dead".

Damn. Some other woman, maybe younger, maybe older, maybe black, white or Asian, maybe richer, maybe poorer, maybe more or less educated...has just become like me. A woman whose baby died before that baby had a chance to live. It's just not fair.

And at that moment, I wanted to go back and tell the hairdresser that I too lost a first...and it was horrible and terrible and yet I wouldn't have taken his existence back for the world. His name was Aidan and he was perfect..and could she please tell this newly bereaved woman that things won't always be this bad? That while life will suck for a good long while, and that there are going to be plenty of sad, depressing and awful days ahead, and while it will NEVER NEVER be okay that her baby died...she won't always feel this bad. Life will get better. She will smile again.

But no, that new babylost mom has to learn that lesson herself, in her own way, in her own time. Nothing I can say, no wisdom I can impart will make it easier. 'Better' cannot be rushed, but nor, thankfully, can it be stopped. Life goes on. It just does.

Kaia says so: