Friday, December 31, 2010

Year in Recap: 2010 (Glenn's PoV)

I really liked Heather's responses to these questions, so I decided to take a stab at them myself. Apologies for any redundancy.

  1. What did you do in 2010 that you’d never done before?

  2. So many things. I'm sure I'm missing a few things, but here's a few...

    Trained for a triathlon. Did the Krispy Kreme challenge (for the first and last time). Learned to swim freestyle. Took a photography class and learned how to do more than just point-and-shoot with a camera. Got pregnant. Found out we were expecting triplets. Stayed overnight in the hospital (as a visitor, not a patient). Went from no kids to being a father of three. Learned what being a parent feels like. Held my dead infant son Oliver in my arms. Sat in a deathwatch for my infant daughter Charlotte. Held Charlotte as she died. Experienced kangaroo care with our surviving daughter Eliza. Celebrated each tiny victory Eliza achieved. Learned a tremendous amount of hospital jargon in a short time. Realized how fortunate parents of healthy full-term infants truly are. Discovered unknown reserves of strength in myself and (especially) in Heather. Celebrated our first Thanksgiving and Christmas in our own home rather than traveling to be with family.

  3. Did you keep your new year’s resolutions, and will you make more for next year?

  4. I think my main resolution for last year was to get in better shape. I kept it really well up until the point where Heather got pregnant, then sick, then put on bed rest - I wasn't able to keep up the motivation to stick with the exercise program when it was just me doing it by myself.

    In the coming year, my resolutions are as follows:
    • Start exercising and eating better again. I really liked being in better shape early last year, and I've gained nearly 20 pounds in the last six months due to inactivity plus eating too much fast food and comfort food. (Yes, I'm a stress eater.)
    • Improve my time management and planning skills. I'm not very good at this to begin with, and when Eliza comes home from the hospital, it'll be that much more important.
    • Be the best father to Eliza that I can be.

  5. Did anyone close to you give birth?

  6. Heather, of course. Our friend had twin girls this spring. Also, one of my co-workers and his wife had their first daughter only about a month before our babies were born. Every time I see their (full-term) baby who's "only a month older than Eliza" by birth date, it's striking what a difference in size there is. I think she outweighs Eliza by about a factor of five.

  7. Did anyone close to you die?

  8. Our babies Charlotte and Oliver.

  9. What countries did you visit?

  10. None. We would have gone on a Caribbean cruise in the spring but had to cancel it due to pregnancy complications.

  11. What would you like to have in 2011 that you lacked in 2010?

  12. Healthy, living triplets. Since that obviously isn't possible, I'll settle for a healthy Eliza who can come home to us.

  13. What dates from 2010 will remain etched upon your memory, and why?

  14. I'm not very good at remembering specific dates, but here are a few:

    • September 8 - The triplets were born
    • September 11 - Oliver died suddenly
    • October 1 - Charlotte died after a steady decline of several days
    • December 27 - The triplets' due date

  15. What was your biggest achievement of the year?

  16. Staying reasonably sane.

  17. What was your biggest failure?

  18. Not spending more time with Charlotte and Oliver while they were alive. Every second would have been precious.

  19. Did you suffer illness or injury?

  20. Nothing worse than falling off my bicycle and scraping my elbow up. Heather and the babies had to handle far worse this year.

  21. What was the best thing you bought?

  22. A shed to store things in. We would never have been able to make room for all of the baby stuff in this house otherwise. Second place goes to our chest freezer for milk storage. When Eliza comes home, she'll need that milk!

  23. Where did most of your money go?

  24. Baby stuff was the main "new" expense this year, but wasn't that big of a slice of the overall pie. Other than that, the usual places - mortgage, food, car payments, etc.

  25. What did you get really excited about?

  26. Pregnancy! Triplet pregnancy!!!

  27. What song will always remind you of 2010?

  28. I don't really associate songs with specific dates or events, but songs that I heard enough this year to stick in my memory include "Bad Romance" (Lady Gaga) and "Little Lion Man" (Mumford & Sons). Whether I'll think of 2010 when I hear them in the future, though, I don't know.

  29. Compared to this time last year, are you:

    • happier or sadder?
    • Yes.
    • thinner or fatter?
    • Fatter, definitely.
    • richer or poorer?
    • About the same.

  30. What do you wish you’d done more of?

  31. Visiting Oliver and Charlotte while they were alive. Planning for the worst. Taking better care of Heather while she was on bedrest.

  32. What do you wish you’d done less of?

  33. Being naively optimistic about the pregnancy and the health of the babies. Worrying about the financial and lifestyle implications of triplets instead of counting my blessings. Thinking selfish thoughts about my own short-term wants and desires rather than thinking about the future.

  34. How did you spend Christmas?

  35. See Heather's answer. Couldn't put it better myself.

  36. What was your favorite TV program?

  37. Modern Family.

  38. What were your favorite books of the year?

  39. I enjoyed reading the Sookie Stackhouse books as Heather finished with them. Also, late in the year, but I think it counts anyway - Heather got me a "Geek Dad" book for Christmas that I've been enjoying reading already.

  40. What was your favorite music from this year?

  41. *shrug*

  42. What were your favorite films of the year?

  43. I liked Inception, Toy Story 3, and How to Train Your Dragon.

  44. What did you do on your birthday, and how old were you?

  45. I can't even remember - how sad is that? I think Heather made me breakfast, and I know she wrote a sweet blog post, but beyond that I really don't remember. I turned 28 - far too young to be this forgetful!

  46. What one thing would have made your year immeasurably more satisfying?

  47. Healthy triplets coming home to us.

  48. How would you describe your personal fashion concept in 2010?

  49. ...what?

  50. What kept you sane?

  51. That's a leading question, but I would absolutely say that Heather's love and support has kept me far more sane than I would otherwise have been after this last year. She's an incredibly strong person.

  52. Tell us a valuable life lesson you learned in 2010.

  53. Plans for the future are well and good, but if things change - and they will - you need to be prepared to roll with it.

Year in Recap: 2010 (Heather's PoV)

I saw this on another blog that I read and thought it would be a good exercise in summarizing this unbelievable year that we've had. Here is my best try with my terrible memory.

1. What did you do in 2010 that you’d never done before?
Wheew this is a hard one to answer considering how much has happened to us this year. Just a highlight of the main ones:
Trained for a triathlon. Jogged (for part of the time!) in the Krispy Kreme Challenge. Got pregnant --pregnant with triplets even!. Canceled a cruise vacation. Saw my doctors far more often than I saw anyone else. Visited the ER. Went on bed rest. Stayed in a hospital (several times!) over night (many nights!). Had an emergency C-section. Gave birth to triplets. Lost my son. Watched my daughter die. Quit a job I liked. Learned oh so much about the neonatal intensive care unit. Gained some insight on how it feels to be a mother and the strength required to be one.

2. Did you keep your new year’s resolutions, and will you make more for next year?
I never really make specific resolutions anymore since it is too easy to fail at them and then feel terrible about it. But I did plan to be more physical and possibly participate in a triathlon. Glenn and I both committed to the training and did a really great job I think. We both got bikes, joined a pool, and trained about 5 days a week. The triathlon was scheduled for May and a month before it I got pregnant and really sick with ovarian hyperstimulation syndrome. I had to stop training and couldn't participate in the race. I'm sad that I wasn't able complete it but I am still proud of how hard we worked to get there. One day I hope to get there again.
Looking ahead to 2011:
I would like to be better at remembering the special moments. I think I am pretty good at living in them ( Hope so at least!) but as for recalling them later, I suck. Whatever I need to do to accomplish this... writing on the blog, taking more pictures, doing SOMETHING with the pictures, video, taking ginko biloba, or whatever works at the time.

3. Did anyone close to you give birth?

Yes, me! And a good friend had twins in the spring!

4. Did anyone close to you die?

Yes. Two of my triplets. Oliver when he was 3 days old due to internal bleeding (a liver subdural hematoma). Charlotte when she was a little over 3 weeks old due to a klebsiella infection and intestinal perforations.

5. What countries did you visit?
 First year in many that I have stayed in the USA the entire time.

6. What would you like to have in 2011 that you lacked in 2010?
A more boring, predictable, plannable year.

7. What dates from 2010 will remain etched upon your memory, and why?
So many.
  • Easter: when I found out we actually had ovarian follicles for only the second time in a year and that we actually had a chance of pregnancy.
  • April: Found out I was pregnant.
  • May: Found out I was expecting triplets.
  • July: Beginning of major pregnancy complications, strict bed rest and last day of working in the office.
  • August 27th: Devastating OB visit resulting in hospitalization for rest of pregnancy.
  • August 30th: Eliza's water breaks.
  • September 8th: Babies' birthday
  • September 11th: Oliver passes away
  • October 1st: Charlotte passes away
  • September & October: The most brutal months of my life to date

8. What was your biggest achievement of the year?

Getting pregnant, and surviving the last 4 months.

9. What was your biggest failure?
Not being able to keep the babies in for longer than 24weeks 2 days. Everyone says there was nothing I could have done and that I did everything possible to keep them in for as long as I did --But its still my FAILURE.

10. Did you suffer illness or injury?
Yeah the pregnancy was rough... ovarian hyperstimulation, retinal occlusion, cerclage, 3 hospital stays...

11. What was the best thing you bought?
Trip insurance for the cruise we had to cancel at the last minute.
A crib off of Craigslist that ended up being recalled. We got a voucher from the company for a brand new one. :)
A chest freezer for all of the breast milk we are storing

12. Where did most of your money go?
Baby stuff

13. What did you get really excited about?
Pregnant!! Triplets!!

15. Compared to this time last year, are you:
– happier or sadder? Happier and sadder
– thinner or fatter? About the same but in much poorer shape.
– richer or poorer? About the same.

16. What do you wish you’d done more of?

Relegated myself to the bed/couch the moment I found out I was expecting triplets despite the conflicting advice. Maybe it would have made a difference.

17. What do you wish you’d done less of?

Worried about how we would afford and care for triplets.

18. How did you spend Christmas?
At the hospital with Eliza, just Glenn and I. Then at a friends for the evening. My family came into town at 3 in the morning the next day. They spent the entire night driving through the snow so they could be here with us before we were all snowed in. At 3:30am our electricity went out. Luckily we had enough blankets to stay warm for the 9 hours it was out. It was one of the strangest Christmas's ever but it was still great. If nothing else, this year has taught us to roll with the punches and to never plan anything in stone.

19. What was your favorite TV program?
Dexter, Breaking Bad, United States of Tara, Nurse Jakie, Modern Family

20. What were your favorite books of the year?
Sookie Stackhouse books. Thanks to my sister for lending them to me.

21. What was your favorite music from this year?

Mumford & Sons, Matt & Kim, Ke$ha, Regina Spektor

22. What were your favorite films of the year?
How to Train Your Dragon, Inception, Date Night

23. What did you do on your birthday, and how old were you?
Turned 29. Glenn made me breakfast, went out to lunch with friends and had dinner with more friends!

24. What one thing would have made your year immeasurably more satisfying?
Argh. Don't like this question. What would make me immeasurably happier RIGHT NOW? Eliza being healthy, happy and at home in my arms. :)

25. What kept you sane?
HAHAHAHA - who said I'm sane? NOT!!

26. Tell us a valuable life lesson you learned in 2010.
When all else fails, just one step in front of the other. Do what you gotta do, man.

Monday, December 27, 2010

Happy Due Day!

Today is the original due date (40 weeks gestation) for our babies. December 27. Eliza is now 110 days old, or zero days adjusted age. She weighs just shy of 3 and a half pounds today. It's a bittersweet day since we're happy that Eliza is here and doing as well as she is, but this milestone makes us especially miss Oliver and Charlotte and wonder what they would be like at this age.

The latest change in Eliza's plan seems to be working well for her. Previously, because she was not growing again, and kept dumping her food undigested out of her ostomy, they kept decreasing her food and increasing her TPN (intravenous) nutrition to give her more guaranteed calories and nutrients (since the TPN doesn't need to be digested and can't be dumped). But restricting her food intake so much was making her hungry and fussy, so she was burning extra calories by fussing, not the desired outcome!

On Christmas Day, one of our favorite nurse practitioners came up with a clever new approach - increase Eliza's TPN to where it provides all of her caloric and nutritional needs, and instead of giving her any fixed amount of food on a fixed schedule, just let her eat when she acts hungry, with food that gets successfully digested instead of dumped being a bonus rather than a part of her base nutritional requirements.

So far this new plan seems to be working really well. She's eating about every three hours, eating a LOT (nearly as much as she was being given before), acting content and sleeping a lot, and gaining weight fast. We hope it continues!

Saturday, December 25, 2010

Merry Christmas!

Merry Christmas from our little Christmas elf!

Thank you to all of our family and friends for all of your love and support this year. May your Christmas be a peaceful and joyous one.

Thursday, December 23, 2010

Picture Time!

Eliza giving me the stink eye, wondering what I am about to do to her.

Her feet are so cute and tiny

her hands too.

 Hat over the eyes makes for an angry - yet adorable babe :)

First bath in a tub (at least as far as we know!) - Dec 18

Loving some cuddle time

Makes me giggle every time. Yeah, I know it's ridiculous :)

Always trying to stick her fingers in her eyes!

Just for comparison, check this out

How far she's come!!

Tuesday, December 21, 2010

You know, more of the same.

So the last post didn't get published until today even though Glenn wrote it last night, so of course there has been more changes since those words were written. The one thing consistent with this whole experience is just how much everything changes... constantly.

The attempt at the axillary PICC line last night was successful! This means no surgery tomorrow and she can get IV nutrition again. Hopefully this will change our 2 week streak of stagnant growth. Back when she was consistently gaining an ounce a day we had calculated out that the earliest she could come home was mid to late Feb. Now I hate to think how the current problems have impacted that - two more months is already more than I can bear to think about. Since she was continuing to dump, her food per day has been reduced and they'll be giving her more calories in the IV. I hate that for her since I think she already feels hungry with the amount she was on. More talk of changing her feeding cycle as well - from continuous to on two hours, off one (3 hour cycle)... which they say is a step towards a "term baby" eating pattern.

Speaking of term baby, Eliza practically is. Tomorrow she is 39 weeks gestational age - can you believe it? I can't!! Thinking about it brings on a whole new set of emotions and worries that I won't go into now. :)

Glenn's at the hospital for me today and requested I take the day off.  I think he may be a little concerned for my sanity (me too, actually! ;) It's been really hard but I've managed to stay away from the hospital so far today. I was able to get my hair cut and get a massage (killer back pain lately... I really should stop being so stressed, huh?) My hair stylist was very thankful to Glenn as well since I've ended up canceling the last 2 appointments I had because of goings-on with Eliza. Making scheduled plans outside the hospital (or even in it, sometimes) is still an almost impossible thing with all that happens day to day. I rarely get to see friends because of this and miss them much!

Glenn just texted to say he'll stay at the hospital tonight and see me tomorrow since Eliza is only content when he holds the paci in her mouth..... she sounds like a real baby now doesn't she?

Will post pictures soon!

Monday, December 20, 2010

We hate PICCs and ostomies

The first few days after our last post went pretty well for Eliza. She started to get overheated in her isolette, so after some discussion, on the 10th, she was moved out of her isolette and into a big girl crib! She didn't like this very much at first (it's a lot noisier out in the open, especially in the TCN) but she soon adapted. It's really something seeing her out in the open now.

We have continued to work with Occupational Therapy and Speech Therapy on feeding Eliza from the bottle and the breast, and she's been a quick learner. She got her first "latch" on the 14th, and on almost every try with the bottle she's taken as much of it as they'll let her drink.

The two-week followup for Eliza's ROP showed that the laser procedure hadn't cleared everything up as well as they'd hoped, so she had to go through a second round of lasering on the 16th. She did pretty decently through the procedure and afterward, but we're definitely hoping that's the end of that.

While everything else was happening, Eliza started dumping (having high amounts of output from her ostomy) again, which is a problem since it means her food was passing through her system undigested. So they went down on her milk volume and increased her TPN (intravenous) input to compensate for it. This seemed to work for a while and she was continuing to grow reasonably well. But on the 15th, her PICC line got clotted and they weren't able to flush it clean, so out it came, and there she was - back on nothing but milk (plus the usual assortment of additives and supplements, of course).

Since we'd previously seen that milk alone just wasn't enough for her to grow, priority one was to try and get a new line put in, but unfortunately her veins are already in pretty rough shape from the amount of poking and prodding she's already been through in her short life so far. One of her nurses tried on day shift, but didn't have any luck. On night shift, another expert nurse was going to try for the PICC, but things hit an unexpected snag. She's one of the nurses that we had during Charlotte's stressful last nights, and we'd asked not to be assigned her as a caregiver again - but not because of any concerns about her technical skills, only her people skills. So we had no objections to her handling Eliza's PICC placement, especially after multiple people told us that she was absolutely the best person for the job.

Unfortunately, that apparently didn't get communicated to her, or something, as we found out when we called later in the shift to check in that she had bowed out of doing it and asked another nurse to do it instead. Supposedly this other nurse was just as experienced, but she had no luck either, and the next day, when we were checking on Eliza, we saw that she had at least a half dozen separate puncture marks, each of which was associated with a pretty bad bruise or vein blowout. We're still trying to chase down exactly what happened overnight, since we would have been fine with the original nurse trying, and each nurse is only supposed to try at most three times before giving up, and we have to wonder why Eliza had so many blowouts if the backup nurse truly was "just as good". We don't have the answers yet, though. We're starting to feel like "problem parents", but we won't let that stop us - Eliza's care comes first!

Since the PICC wasn't working out, it was decided to give her a few days with just the milk feeds to see how she could do. Eliza started to show signs of dumping again, so she got switched to continuous feeding (previously she'd been on on-2-hours/off-2-hours or on-3/off-1) to give her the food more slowly and hopefully digest better. She still kept dumping, so they replaced her "MCT oil" supplement with "microlipids", which are supposed to slow the passage of food through her digestive tract and give it more time to be absorbed.

Unfortunately, the microlipids are very slippery, and ever since that change was made, her ostomy bag simply would not stay attached to her skin for any length of time, and became very prone to leaking. When the bag leaks, it needs to be taken off and completely replaced at the next available opportunity, since semi-digested food on the skin is acidic and irritating. At its worst, she had to have her bag changed 4 times in one shift (it's normally only changed every 24-48 hours). So even though it was working to make her digest more thoroughly (and she did manage to gain a little weight last night after losing the previous two nights), we worry that the amount of stress she goes through with so many bag changes (it can be a lengthy process, and having stuff peeled off and then new stuff maneuvered into place and then glued to her skin really makes her mad) ends up sabotaging any gains she's making. Plus she's starting to have some skin irritation from all the bag attaching and detaching she's been through.

In short, she's back between a rock and a hard place again. Microlipids make her bag fall off, damage her skin, and stress her. TPN requires PICC access, which is proving very difficult to obtain and retain. If she gets neither microlipids nor TPN, then she can't get enough calories to grow with her digestive system the way it is. And until she grows a bunch more, they won't be willing to do the surgery to reconnect her bowels. So frustrating.

Tonight one of the nurse practitioners is going to try to put in a different type of PICC line (an axillary PICC, which goes in through the armpit instead of an arm or leg), which only NPs are permitted to try and insert. If that doesn't work, our next fallback option is surgery to put in a Broviac catheter. Surgery is obviously the less desirable option, so here's hoping the latest PICC attempt works.

Wednesday, December 8, 2010

Another week past - that's all?!

I sat down to write this post thinking that it's been a long time since our last one, but I see now that it's only (?) been a week. Feels like a lot longer.

Eliza is three months old today. Just being able to say that makes me breathe a bit easier. Oliver died at three days old, and Charlotte at three weeks, so I couldn't help but worry as this date approached... you might say I'm being more than a bit superstitious, and you'd be absolutely right. I know it's crazy. But still, three months feels very significant to me.

Last Wednesday, Eliza got moved from the ICN (intensive care nursery) to the TCN (transitional care nursery). This is supposedly a good thing, both as a reflection of how stable and healthy she is (no longer considered critical) and as a big step closer to eventually coming home. We can't help but have mixed feelings about it, though, as TCN does mean she gets less individual attention from the nurses, and the babies are MUCH louder than the ICN babies. Hungry & big babies = lots of noise. Our first impressions were also unfortunately rather negative, as we had a TCN nurse on Thursday and Friday nights who completely failed to chart (i.e., record for future reference) some symptoms that Eliza was developing, even after Heather specifically called attention to them as being unusual for Eliza. By Saturday, she was having a lot of bradies and desats, and after a chest x-ray, it turned out that she was retaining fluid in her lungs again. This is clearing up fine after putting her back on diuretics, but if the TCN nurse had properly recorded things on Thursday and Friday we believe that it could have been caught earlier before it caused her so much stress. So all in all not the best first impression, but at least Eliza has been moved to a quieter corner now and we have had great nurses since the incident.

Since Eliza's been growing so much lately, her eyes have been developing too, and unfortunately we found last week that she had begun to develop significant ROP (retinopathy of prematurity). So on Friday she got laser eye surgery to correct it. It's too early to tell for sure whether that was enough to resolve it, but a follow-up exam this week showed no further degradation, which is a good sign in and of itself. Baby will have enough vision problems just being the child of me (extreme nearsightedness) and Heather (extreme astigmatism), she doesn't need anything else causing her eyes more trouble!

Other exciting events in Eliza's life - they (and we) have started trying to teach her to eat rather than just having all her food pumped down a tube into her stomach. Baby steps so far, just taking tiny amounts of milk from a bottle, but she seems to be doing pretty decently with it so far. It was really funny watching her reaction to Heather trying to burp her after one such feed - she was making faces that clearly said "What the heck is going on here?"

All of the growth and weight gain she's been having have made such a transformation of Eliza's appearance. She's looking like a small baby now instead of like a skinny, wrinkly old man. She's actually got some baby fat now (especially in her cheeks), and her arms and legs are getting chubby instead of being little skin-and-bones sticks. It's so good to see. They've even started letting her wear preemie clothes, although they're still too big for her so it's a pretty comical sight:

Wednesday, December 1, 2010

Turkey Day

We had a great Thanksgiving with our little turkey! 

Much thanks to my family for coming up, bringing yummy food, and hanging out with us at the hospital. :)