Saturday, February 25, 2012

Head Case

Casted: 7 weeks + 1 day. Time until UNcasted: 5 weeks + 3 days!

I can now officially say we are over the hump in terms of Kaia's cast time. We had an appointment at the hospital on Friday and since we were early I decided to swing by the Ortho department to see if they had booked Kaia's "FREEDOM" date yet. They had, and the nice front desk lady gave us our appointment of April 3rd at 9:15am. Whoo hoo! Can't wait. Good news is that she'll be out for Easter! An awesome excuse to wear cute outfits!

However that's about the only good news we gleaned from our Friday trip to the hospital. It was a bit of a mess and very stressful. We arrived at 8 am and Kaia had two ultrasounds scheduled back to back for 9am and 9:30am and then an appointment with the doctor afterwards.

I'm not sure if I've mentioned it on here (mainly because I thought it was such a NON-issue that it wasn't worth mentioning), but a few days after Kaia was born she had a head ultrasound. This is pretty standard in the preemie world to check for brain bleeds. In the preemie brain, some of the small vessels that line the ventricles of the brain are prone to rupturing because of the many complications and body stresses that affect premature babies. The earlier the baby is born, the increased likelihood of brain bleeds being an issue, ie: your 24 weeker is almost guaranteed to have at least a small bleed (or possibly a very large bleed which can be disastrous), while in your 32 weeker (like Kaia) it's less likely.

At birth, Kaia didn't have any brain bleeds, BUT it was noted that her ventricles (the spaces inside your brain where cerebrospinal fluid is made) were asymmetrical with the left being larger than the right. At the time, her doctors were fairly unconcerned and assured me that they would just follow it with repeat head ultrasounds. We had a few more checks while Kaia was still in the NICU and it never seemed to improve (ie: even out in size), but it never got WORSE either. Eventually, since we were considering a helmet for Kaia due to the shape of her head, her pediatrician made a referral for us to go see a Neurosurgeon, where she figured we could have both the ventricle issue assessed as well as the need for a helmet. Neurosurgeons deal with both the inside (brain) AND the outside (shape of the skull) so we thought "hey, we'll kill two birds with one stone" and make sure Kaia's insides are cool and then we'll get a helmet to fix the shape of the outsides.

I was even less concerned about the ventricle issue after her NICU follow up appointment in January where the neonatologist who saw us said that they quite often see ventricle asymmetry in preemies and have no real evidence to say it means anything. Perfect!

So, Friday we went for a repeat head ultrasound. I was completely and totally unworried about the ventricles and I was focusing all my mental energies on making sure I asked questions about the helmet that it took me a second to realize that the Neurosurgeon was recommending that Kaia go for a CT scan to check her brain! Uh...what? Basically he said that the ventricles haven't improved (and he might have said they are slightly bigger, although I'm wracking my brain and I can't remember his exact phrase-ology now) he wants to get a better picture via CT. We're setting that up for 6-8 weeks from now. I do remember him saying that while he's pretty sure the ventricle asymmetry is 'just her' and not going to be an issue, 'the possibility of her needing a shunt isn't zero'. Below is a picture of what a shunt is.
A shunt is an internal drain that pumps fluid from the overfull ventricles and puts the fluid into the belly where it's absorbed. The shunt is placed in the body permanently. Associated complications with a shunt include: infection, blockage of the drain, or over drainage. However, if ventricles aren't drained properly it can lead to hydrocephalus and brain swelling resulting in headaches, nausea, vomiting, double vision, altered consciousness, mental disability and can lead to death. NONE OF WHICH YOU WANT TO HEAR ABOUT YOUR CHILD!!!!

I was literally in shock. Um...wait a second...Kaia's insides are's all the outside stuff we had to fix: hip, then head and then we're golden, right?

After lobbing this bomb, the surgeon then goes on to say that we'll needed to get started on the helmet as soon as we can if we want it to be effective. Helmets only really work to correct head shape up until age 1, and since Kaia's almost 8 months actual and 6 months corrected, we'll have to get started soon. I was prepared for this, so I was able to ask intelligently and reasonably (I thought) ask if we could possibly delay the helmet until after she's out of the cast. It's only a month or so away and her head is only mildly odd shaped, so maybe we don't need that much time in a helmet anyway? Plus, who wants to wear TWO pieces of hot, itchy, restrictive equipment at the same time if it's possible to avoid it? The neurosurgeon look at me and asked in a not very nice tone "well, is that for your convenience or hers?"


Um...HERS!!!??? Obviously!!! I don't give a shit about what she's wearing. I care that she's happy, and comfortable, and not being tortured by not being able to move the lower half of her body AND have a hot, itchy helmet on her head!!!

The Neurosurgeon's response was: "Well she won't remember any of this anyway".

I have the unfortunate communication defect of freezing up and not being able to speak intelligently when I'm mad, so very quickly the appointment came to an end I was packing Kaia up and rushing out of the exam room. I was so overwhelmed I just wanted to get out of there. I have heard that "won't remember" phrase SO much about the cast and I'm really starting to HATE it, so when he said it I saw RED!

I understand why people say it. I KNOW I said it to parents working in the NICU. But when I hear "well she won't remember it" as a parent it just sounds so dismissive. As if it's of no consequence that my baby might be in pain or uncomfortable. It's also dismissive of the real distress one feels as a parent to have to put one's child through something that is painful or uncomfortable, even if it's for their own good. It's awful to watch your child be miserable and be able to do nothing. It's mentally scarring. Why shouldn't that count for something?

One would never say about a baby who has been abused or neglected "oh well, it's not like she'll remember it anyway". No, a reasonable person would be horrified that anyone could do something nasty to a helpless baby. So why is it okay to think that if Kaia is miserable or uncomfortable, and can't complain or ask questions or protest that somehow that's just fine and dandy?

Needless to say, I was upset when everything was said and done. I've since almost convinced myself that they are just being overly cautious with the CT. Since your brain is a pretty necessary organ, and 'hey we have the technology to do it, so why not?', let's just MAKE SURE that her brain is fine so we won't have to worry about it. Of course now the possibility that it IS something will be in the back of our minds until we learn more. It just feels like it NEVER ENDS!

Oh, and to top it all off, the second ultrasound that Kaia had was of her labia, which I was able to pay attention to because Kaia wasn't crying (like she was during the head ultrasound). I came home yesterday and searched ultrasound images of hernias, and from my (completely untrained) eye, I'm betting she has a hernia too. Boo.

Not exactly the news we'd be hoping for. One thing I've realize after coming home yesterday is that I need to have someone (Brian or my mom) come with me to these appointments. It's just too much work to have to haul Kaia around, keep her happy and fed and entertained, while also remaining calm and communicative with the doctors. I always seem to think "Emily, you're a nurse. Why can't you multitask and ask intelligent, well thought out questions on the fly, the way you do with patients?" I don't know, but I just can't. It's different when you're the parent.

Chalk it up to lesson learned.

Saturday, February 18, 2012


I'm an aunt.

My brother-in-law and sister-in-law had their baby on Thursday.

I am thrilled for them. They have waited a LONG time for this.
I am happy for my in-laws. They have a new grand-child.
I am excited for myself and Brian. We are an aunt and uncle.
I am pleased for Kaia. She has a cousin very close in age.
I am relieved the baby is healthy and well. Not all babies are so lucky.

But the part of my heart that belongs to Aidan did a tight little squeeze, lurch and drop when Brian, on the phone minutes after delivery, turned to me and said:

"It's a boy!"


It's a boy. A boy. Boy.

Oh, boy.

I had prepared myself for this. I suspected it was a boy. Was entirely anticipating the arrival of a nephew. Was excited even.

Didn't entirely anticipate the sadness.

Where did that come from?

Last night, laying in bed, I kept myself awake thinking about it, mulling it over, when I really should have been sleeping. A part of me is a little ashamed to admit I cried. I cried, like I haven't cried in a long while. I was so looking forward to this baby being born, and I'm happy, really I why the sudden melancholy?

I went through this a bit when Kaia was born. Maybe I always will when a baby I really care about comes along. For some reason it was different when it was my own. Maybe because I have time to process now. When Kaia was born it was a wash of hormones, milk, blood and sleep deprivation. And above all that, complete and total elation that she was alive. My Acorn was here! She made it! I did it! Beyond that, I had no time or energy to focus.

Now I do.

So as I lay there last night, thinking too much, I considered, what if it had been a girl? If I had suddenly had a niece I think I would have naturally been more inclined to compare to Kaia. To compare the similarities and differences in the births of our two girls. There wouldn't have been much resemblance. I think the overwhelming feeling I might have had beyond excitement and happiness, might have been a bit of jealousy. Jealous because of the things my sister-in-law got to experience that I didn't: healthy pregnancy, full term pregnancy, vaginal delivery, saw and held baby on the day of delivery, attempted to breastfeed baby on day of delivery, will be going home tomorrow accompanied by an infant.

I would have felt a bit jealous because of the differences in the beginnings of our two babies, but recognized that in the days and weeks to come, those differences will cease to matter. If we both had girls, who cares what their first few weeks are like when they are 6 and 7, 19 and 20, 39 and 40? If we had two little girls running around, born so close together, the ghostly outline of a little boy who lives in my head could remain hazy and undefined. There would be no 'exact replica of a figment of my imagination'.

No one to compare with the son who is ashes and lives on the shelf.

But I now have a nephew. A boy who shares 1/8th the same genetic material as Aidan. This little boy will grow and be and do and see, and above Live a life Aidan will never have. Who has already, at 2 1/2 days old, done so much more than my son ever got to. I'm happy for him. Relieved he is here, safe and sound.

Sad my son isn't.

We are going to meet him on Monday. I'm excited...tinged with a bit of grief. I know I will love this little boy, love him for himself and no other, but I'm afraid he will always be a bit of a forward echo in time of what my little boy never was. And, with the passage of time, I expect that will be okay. May even be somewhat of a joy and comfort, to see him grow up beside his cousin Kaia. A close male relation that is the next-best thing to a brother.

But right hurts a little bit.

Monday, February 13, 2012

Cast Change

5 weeks + 3 days in cast, 7 to 8 weeks to go.

Yep, you read that right...we're not as close to half way done as I thought. But there was good and bad news today so I'll start from the beginning.

It was an early beginning. Kaia's cast change time was at 8 am. Because she's a baby and can't hold still on command, the cast change was done under anesthetic. So while there was no actual surgery today, we had to prepare as though there was. Which means we had to wake Kaia up at 3:45 am to give her a last bottle before she was NPO (no food) for 4 hours prior to surgery. It also meant we had to be at the hospital by 6 am for her pre-op check in, so we didn't get much sleep last night (YAWN!)

Anyway, the cast change went smooth as silk. She was taken in right at 8am and she was only under for about an hour. She woke up really well (last time she screamed herself hoarse) and we were released from the hospital by 11 am. First surgical time slot of the day sucks to get started, but it's worth it to be home by noon.

The surgeon came to talk to us afterwards and said things had gone well, and Kaia's hip, from what he can tell just by x-ray and moving it around, is developing as he would like. He'd like to leave her in the cast for at least another 7 to 8 weeks. Since I was hoping we'd be out by the end of March, (ie: 6 ish weeks), this is not the most thrilling news. Now it looks like we might spend Easter in the cast. This would put her 'freedom date' sometime the second week of April if he makes us go the full 8 weeks.

The other not so wonderful thing is that after her initial surgery back in January, Kaia had an MRI immediately afterwards to confirm that her hip was in place once the cast was on (no use being in a cast if the hip isn't EXACTLY where it's suppose to be). During that MRI, an incidental finding was discovered of a "mass in the labia". You can't see this "mass" on visible inspection (and I've looked), but the surgeon told us today he suspects it might be a hernia. Kaia now has an ultrasound of her 'lady bits' scheduled for the end of February to see if they can exactly tell what it is. If it is in fact a hernia, I'm betting this isn't going to be our last day surgery procedure!


A hernia isn't totally unexpected, as hernias are fairly common amongst the preemie set (although typically more often seen in boys in my experience), AND Kaia's got family history on her (down) side, since Brian, my father and my brother all had hernia surgery as babies. Still, it's just one more thing we'll have to 'deal' with at some point. One more scar for my little lady to chalk up.

Anyway, on to the good news.

Good news is that once Kaia is out of the cast...THAT'S IT! From what I've typically read on babycenter under the "hip dysplasia board", kids are often put in a brace or harness AGAIN after being in a cast. The 'after cast harness' is usually worn full time for awhile except for baths, then the time is gradually decreased over the following weeks/months and sometimes even YEARS to spans of "18 hours a day" or "only at night". I was fully expecting her surgeon to say that yes, Kaia would be fitted for a brace once the cast was off. However, when I asked today he said "Nope. Once the cast is off that's it".

Really? REALLY??!! YIPPEE!!!! I'll take another week or two in a cast as trade-sies for NO time in a brace.

Now I realize that we're not out of the woods yet. If, over time, Kaia's hip doesn't make the progress towards 'normal' that they would like to see, it could mean more surgery and/or cast time in the future, but we'll deal with that if it comes (and I really hope it doesn't. Can you imagine hauling your 6 year old around in a body cast? My back aches just thinking about it!)

So, that's the update! Grow Kaia's hip! GROW!!!

Tuesday, February 7, 2012

The Next: Part Two

I know this probably gets debated a lot on dead baby blogs, but it's been my experience so far that I will never feel as sad, as hopeless or as desperate for another baby than I was after I lost my first and only child. As much as in the years to come I may hope for another baby, I don't think it will be as hard? difficult? all encompassing? as it was when I was trying to get pregnant with first Aidan and then Kaia. Death of an only, in my experience, is just the rock bottom of empty.

Because I have her, I feel lucky, blessed and like I could (and may have to) consider my family complete.

But what does that mean for Kaia?

Both Brian and I each have a brother. Brian's is older, mine is younger. We both grew up in the typical mom, dad and 2 kids family. We both played with our brothers as kids. We each share that sibling bond. We can have conversations with our brothers that we couldn't have with anyone else. As Catherine so aptly put it having a conversation with your sibling is "like reading a webpage absolutely jammed pack full of hyperlinks. Or a book crammed with footnotes". Your shared past guarantees a certain understanding. Siblings own a special and important piece of your childhood that not even your parents can quite understand.

Brian and I consider ourselves lucky that we both remain fond of our siblings into adulthood. We look forward to seeing them. Neither Brian or I harbor feelings of animosity or jealousy towards our brothers and are happy when we hear they are doing well. If time and space permitted we would see them more often.

One day, as much as I might want another baby for me, I think eventually if we don't have another one I will grieve the lack of it more for Kaia. A brother or a sister is a special thing and I would feel she is missing out on something if she doesn't have a (living) sibling. Since I'm being honest, it almost scares me to think of Kaia being an only child. What if she's spoiled because of it? Will she grow up feeling lonely? What if she asks for a sibling, how will I answer? What if something happens to Brian and I (and eventually it will, as it does to us all)...she will be all alone. Over the past few years as I have watched my parents cope with the deaths of my grandparents, I realized the safety and security of having a sibling (or two or three) to lean on in difficult family times continues well into adulthood.

However, I'm also trying to be realistic and not romanticize the sibling bond too much. Yes, if I had my way Kaia would have at least one more (living, definitely living) sibling, who she would love and adore and get along with smashingly. Boy or girl. Doesn't matter.

But I know it doesn't always happen that way. Siblings can be a help and comfort to each other, but in some cases they can also be a down right drag. Take my good friend. Her brother has had repeated interactions with the law. He is in his 20s and didn't finish high school. He lacks motivation, is currently is out of work and seems to have no desire to find a job. While I know she loves him...I get the sense that she doesn't always like him and resents the stress he places on her and the rest of her family. There is a lot of 'eye-rolling' when his name comes up. While my friend and her brother see each other often, I wouldn't describe them as 'close'. Or take my cousins. These sisters have had repeated, lengthy fights as children, teens and adults. The kind where you don't speak to one another for days, weeks or months at a time. I'm sure awful things have been said and done on both sides. Before this past Christmas their fight involved one of these sister's children. It's sad and unfortunate to see their animosity passed along to the next generation.

I wonder sometimes would my friend and my cousins have wished to be only children? No one to fight with or resent or stress about. I wonder how much of their bad relationships with one another stems from treatment by their parents. Can one ever ensure that one's children get along? Or does it have more to do with personality clashes, birth order, or some other uncontrollable or outside factor? Individual successes, failures, personal strengths and weaknesses, and possible major illnesses can all play a part in how one views a sibling. It would be nice and certainly easier to believe that by some action on our behalf we could ensure Kaia and her younger sibling would be the best of friends, but it may not be up to us.

Then I look to only children I have known. My references for this includes a couple of my cousins, two childhood friends and the children of a few colleagues. What have their lives been like? On the whole, I would say these children have had good lives and don't seem to be especially 'lacking' for not having a sibling. One of my childhood friends did seem to be a bit 'spoiled' with a large sense of entitlement, but that could have been her personality, sibling or not. Only children I have known do seem to have more 'fringe' benefits in terms of material items, which makes sense, since an only's slice of the parental financial pie is going to be larger by virtue of not having to share.

One thing that I have observed with colleagues who have only children, is that they seem to be able to travel more easily with a single child and therefore do so more often...and not just to the standard 'child friendly' places (Disney World anyone?) This doesn't seem to just be due to financial reasons, either. Traveling with one child, whether it's by plane, train or automobile is likely easier to manage (one child, one suitcase, one stroller, one hand to hold is always easier to manage than 2). You only have to take one child's needs and schedules into account. Plus onlies I have known are often more 'adult' oriented by virtue of spending a lot of their home life with adults, thus sometimes being more interested in adult things. A only might like Disney World...but he or she might also be more inclined to like museums, interesting restaurants and historical sites than a child who has a sibling to team up with and insist "DISNEY! DISNEY! DISNEY!" I remember a colleague I knew took her young son to Italy. She had a picture on her desk of him chasing pigeons in an Italian piazza which was quite stunning...and definitely more my style of vacation than mouse-ears and fake castles.

Possibly the best part of having an only child, is the close child-parent bond that seems to develop between only children and their parents. Not that this can't happen in multi-child families, but some of the best examples I've seen of this are in only child families. My parent's friends had an only child who was my age growing up. She was very close with both her mom and her dad. She respected them, listened to them, and they to her. As a young adult her and her boyfriend would choose to spend time with her parents. They vacationed together. When, as an adult she had to move to a different city for work, her parents even considered moving too. She was their only child and they all wanted to be close to one another. It would be nice to think that Kaia will grow up and still enjoy spending time with us by virtue of us being her only immediate family.

An only child may make our lives somewhat more fulfilling in some ways as well. I really want to go back to school to get my masters and become a nurse practitioner. I really admire the work the NPs do at the hospital where I work and I can envision myself doing the same. Going back to school, while continuing to work, might be doable with two young children...but my opportunity to do so may come sooner and be made easier with only Kaia to have to consider. Having another child would mean I would be off work again on maternity leave for a year at some point. Great for raising a baby, not so great for furthering a career.

It's a lot to consider on both sides. I love having Kaia and I'm so grateful for her and if I had to choose today, I'd say "yes, definitely we want another baby"...but...if we don't...maybe that will okay too.

Are you an only? Had one sibling? One of many? Tell me what your home life was like as a child. What are your thoughts about onlies?

Friday, February 3, 2012

Issues and non-issues

4 weeks casted, 8 weeks to go.

So I keep getting on here to write the second part of my "The Next" post, but it's just not flowing. Perhaps because it's difficult to even consider having another kid right now because we're currently having some difficulties with the one we've got. Nothing terrible mind you...but draining all the same.

So, apparently some of the things I thought would be a big problem come cast time are turning out to be relative non-issues. Kaia has been in the cast 4 weeks now and since we've added the puppy piddle pad 'runner' down the back of her cast we've had very few issues with 'poo-splosions'. The cast has no noticeable odor (actually it has a 'cast' type odor which is very non-offensive) and I've had relatively little problem keeping Kaia clean. Although it would be easier to pop her in the bath, I think both Kaia and I have come to enjoy her 'bed baths' on the kitchen counter. She definitely seems to enjoy the foot massage I give her at the end which is kind of cute. I'm sure her legs are nasty and dry, but since they're under the cast, it's not an issue. Dressing her has been okay too, although she does look a bit ridiculous in her over sized clothes, but we got a bunch of knock off baby legs from China (10 pair for $28!!) and they are fun to accessorize with.

It's her mood that has been more of a problem. Pre-cast Kaia use to be a very chill baby, easy to soothe and happy to just watch what's going on. I could pop her in her swing and she would happily kick and play and bat at her toys for over an hour, even fall asleep sometimes. That's how I got all of my Christmas baking done. She'd play or nap and I'd make cookies! Now, however, she wants to be entertained ALL THE TIME. This means she wants to be seated on my lap, enjoying toys or pulling at my face or gnawing on her hands or bouncing or rocking or being sung to....etc, etc. Now I'm all for having lots of fun play time, but sheesh chicky...mommy sometimes has to eat and pee ya' know. Worse is that when not being entertained she whines. A moderately pitched, back of the throat kind of whine. When you first hear it, you think "oh that's not bad"....until it's all you hear...all the time.

She has also been quicker to cry lately too. She hasn't been much of a crier up until this point, but now at least once a day (and sometimes more often) Kaia has an all out melt down cry. Where nothing will soothe: not a bottle, not a hug, not rocking or bouncing and you just have to wait it out. By the end she has exhausted herself and has tears running down her face and a snotty nose. It's so sad...and depressing to not be able to do anything to make it better.

Sleep has been the other big issue. Twice this week she's been awake until 1 am or later. Usually that was a very RARE occasion. She also use to be a fairly consistent napper in the afternoon. I'd often get her down for over an hour, sometimes even two or three. This week it's been more like cat naps. I'll put her down, go to pump and *just* finish and think "oh good, now I'll..." WAAAAAWHHHHHHH!!!!!!! *crap, never mind*

It's also hard to see other babies close to the same age as Kaia doing things like rolling over, and sitting up. She can't do any of that. She can push up a bit on her hands when she's on her tummy, but otherwise she has no ability to move on her own. I'm sure that's what's contributing to her grouchiness. I wish she was a little freer to develop some "mad baby skillz" which I could ooh and ahh over. I know she'll do all those things eventually, but until then she's more helpless than she or I would like.

On the positive side Kaia continues to have the biggest, best smile I have ever seen. She makes lots of noises including this weird 'inhale' laugh thing that I think is kind of funny but it creeps Brian out because he says it sounds like she's panicking. I think she does it because it makes us look at her and that's what she's all about lately. ATTENTION! Kaia's very social and LOVES parties where there is a lot of people around. Last weekend we were at Brian's brother's place for about 6 hours and she was a happy camper the whole time we were there and she barely even napped. I always get comments at these things like "Oh my goodness, she's just the best baby." Which she is... She just wants the party to happen EVERY DAY! ALL THE TIME! COME OVER TO MY HOUSE AND ENTERTAIN ME!!! She doesn't mind being passed around to different people and seems content in everyone's arms. She's also growing really well. At her appointment to get her RSV shot this week, with a little math (7.53 kg - 1.o3 kg for the cast) we figure she weighs exactly 6.5 kg (14.3 lbs), so I'm happy with her growth.

I keep getting a push from some of her doctors to start solids since she's almost 7 months actual and 5 months adjusted. And while I'm looking forward to cutting down on the pumping, I'm kind of nervous about starting anything new while she's in the cast. Even on a purely breast-milk diet Kaia had a bit of constipation this week, and while that seems to have been resolved, it makes me a little hesitant to start adding things to her diet which are unfamiliar. The last thing we want is her MORE uncomfortable in a cast. Plus, she can't sit up easily to eat (she won't fit in a high chair so we'd have to hold her) and mushed up solid baby food = messy. Cast + messy = dirty smelly baby.

One thing we are looking forward to is that Kaia's cast change is coming up in a week and a half. I'm going to ask her surgeon if her second cast needs to be *quite* so high as part of her frustration is not being able to easily put things in her mouth due to the cast being in the way. Also it might free up her torso to move a bit which might make her happier. They have to put her under anesthesia to change the cast, which is unfortunate as it means all the prep for surgery (no milk for 4 hours beforehand)...however the cast change comes at the half way point so that means we are almost halfway done and halfway to a working hip (pleaseohpleaseohplease)!

So that's what's up with us lately.

Some pictures of Kaia in a happy mood!