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?

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.


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


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.
  



3. Did anyone close to you give birth?


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.


4. Did anyone close to you die?


Our babies Charlotte and Oliver.


5. What countries did you visit?

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


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

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


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

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
  



8. What was your biggest achievement of the year?


Staying reasonably sane.


9. What was your biggest failure?

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


10. Did you suffer illness or injury?

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


11. What was the best thing you bought?

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!


12. Where did most of your money go?

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.


13. What did you get really excited about?

Pregnancy! Triplet pregnancy!!!


14. What song will always remind you of 2010?

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.


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



• happier or sadder?
Yes.

• thinner or fatter?
Fatter, definitely.

• richer or poorer?
About the same.




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


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


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


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.


18. How did you spend Christmas?

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


19. What was your favorite TV program?

Modern Family.


20. What were your favorite books of the year?

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.


21. What was your favorite music from this year?


*shrug*


22. What were your favorite films of the year?

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


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

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!


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

Healthy triplets coming home to us.


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

...what?


26. What kept you sane?

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.


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


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?
None.
 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.

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!

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.

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.

Woops!

 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!!

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!

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.

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:

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. :) 

Thankfulness

Some of the things I'm most thankful for:

• Our beautiful baby girl Eliza - every day with her is a treasure.
  
• My wonderful wife Heather, without whom I would have crashed and burned long ago.
• Eliza finally starting to grow again. Grow baby grow!
  
• The time we had with our babies Oliver and Charlotte (though I would rather have been thankful for them being here with us still...)
• All of our family, friends, co-workers, and neighbors who have stepped forward to help us through tough times with prayers, supportive words, and prepared meals.
  
• Our dog Pasha, antisocial and neurotic though she can be.
• Having a good job that lets me provide for our family, isn't too stressful, and gives me the flexibility to be at the hospital when I need to be.
• Health insurance. I don't know how anyone can put babies through the ICN without it.
• Home-made Thanksgiving dinner shared with family.
• The beginning of Christmas season...!

One Step Forward

Eliza is now 2 pounds!! It looks like for now they have finally worked out the magic concoction to get the baby to grow. Four days ago they started her on IV nutrition in addition to the milk and some other additives.. and she's gained over 100 grams since!

The tightness in my chest has relaxed some and it feels so good to be able to breathe easy for a moment.

My sister came to visit this weekend and brought her handy video camera. I think we will have to get one soon. :) Eliza's starting to enjoy touch and seems to be checking out her surroundings. I hope you share in our enjoyment of this moment. She's so magical to me. :)

 

Still trying to grow

I'm starting to feel like a broken record... lack of growth (aka failure to thrive) is still Eliza's #1 problem. After Monday's blood transfusion (only six days since the previous one...) and the associated 12 hours of no food followed by 12 hours of half food, Tuesday night found that Eliza had again lost all of the weight she'd gained recently. Her weight was right back to where it had been two weeks ago - very frustrating!

We had a lengthy discussion during rounds Wednesday morning, and a meeting with the new doctor that afternoon, and came out of it with several plans:

First, increased her feeding amount again - up to 180 mL/kg/day now, which should be enough to provide about one and a half times as many calories as a preemie normally needs to grow. This should really be enough food for her to grow on - so long as she can keep getting it consistently. Which brought us to part two of the plan. Blood transfusions are the main reason she has to go without food, so they started her on injections of erythropoietin, a hormone that stimulates blood cell production. Hopefully that will help her not need transfusions so often. When she does need transfusions, the plan was to put a PICC line back in so that she could switch over to full IV feeds for the day so as to continue getting plenty of calories.

So that was the plan, anyway. And I'm sure you all know by now just how well we and "plans" get along these days... so of course, overnight she started "dumping" - the increased feeds overloaded her digestive system and caused lots of the milk to just pass straight through her more or less undigested - not the effect we wanted! So we went on to "plan B" rather quicker than expected, reducing her feeds by a good bit and adding clear fluids and lipids (delivered by IV for now) to make up the difference.

They tried to put in a PICC line today (because a PICC can stay in a lot longer than an IV, and they can give more concentrated nutrients through it) but were unsuccessful. Apparently her veins are not in the best shape, whether from previous IVs, or something else - I'm not exactly sure. So we still don't have a fallback option for providing all of her nutrients when she next needs another transfusion. They're talking about trying to put in some other kind of central line tomorrow, but that's not definite yet - we'll see.

Waiting now for her 9 PM assessment to find out whether she's gained or lost weight today... here's hoping for some good news for a change!

A week in the life

Even though we haven't had any major crises with Eliza lately, things have been tough and its been a struggle to find the positives. It's been exhausting and overwhelming so we haven't done a good job of keeping the blog updated. A summary of the issues we have been dealing with..

+ Failure to thrive - you can get a good look at this in the chart Glenn previously posted. Eliza had one good week of growth and then has stagnated the last couple weeks. There are lots of hypotheses and reasons being discussed for this problem including: high metabolism (is she really my daughter??), too much energy being expended (having to work hard to breathe and keep warm due to her size), decreased absorption due to her ileostomy (though hers is very low in her small intestines so in theory this shouldn't be a significant factor), other complicated chemistry factors (ex. her sodium and potassium levels), and just the repeated needed pauses in feeds due to other treatments. (One possibility that was eliminated was low calorie milk -- they ran a test and found my breast milk to be 27 calories/ounce. This is quite high considering "normal" milk to be 20 calories.) Her weight gain issues seem to be a combination of all of the above and there are lots of things being tried and discussed to attempt to help but its such a complicated situation that no one really knows exactly what's needed to help her..........This problem is her single most significant issue since it is the linchpin for everything else getting better.

+ Osteopenia of prematurity - girl's got weak bones. This condition is another lesson in chemistry that I don't think I will go into great details at the moment. Basically it's related to her growth and mineral absorption...and so she's at a high risk for bone fractures.

+ Blood transfusions - at the beginning of her life she had several transfusions (which were expected) but now that she is older she should be starting to make her own blood cells. For the last 3 weeks she has needed a transfusion every week. Each time she receives one her body misses another chance to make its own cells and it puts excess iron into her system. Her feeds are also stopped for 12 hours and decreased for another 12. Without the transfusions though her heart has to work very hard and her kidneys don't function as well. One way to make this better? Growing!

+ Hydrocortisone - Baby's got a serious dependence. This is a steroid that her body should be making on its own but in preemies it has to be supplemented and, like the blood, the more you supplement the less the body makes. Her renal functions are dependent on the hydcortisone levels and as they try to wean, her kidneys stop functioning as well. High levels of the steroid inhibit growth.

So 100 points for you if you can spot the vicious cycle in all of this.

All of the issues make it difficult to grow and yet she needs to grow to get better. Awesome.

Growing pains

We'll try and do a real post soon to cover some of the multitude of events, changes, and medical scares that Eliza has had over the last couple of weeks, but I wanted to go ahead and share this. We had a meeting with Eliza's care team (doctor, nurse practitioners, nurses, social worker, etc.) on Tuesday to discuss her care plan and get a better "big picture" understanding of where we're at and what needs to be done. While we covered a lot of important ground, this chart in particular really struck a chord with me. It shows how Eliza has grown (or not) since birth as compared to the typical development for babies.



One point of confusion for me (which I still haven't gotten a satisfactory answer to, unfortunately) is whether these growth curves are typical for micro-preemies for Eliza, as opposed to infants continuing to develop in the womb. The doctor said it was the same for both, but that just doesn't make sense to me - everything I've heard before says preemies just can't grow as well compared to staying in the womb for longer. I'd really like to see a similar set of charts that are specific to preemies... hopefully it wouldn't look as bad for Eliza?

It's been a month today

Since our Charlotte passed away. I've been thinking about her a lot and even called Eliza "Charlotte" to the nurse. That was painful.

It was so hard to go back to the hospital the day after she passed away and yet I think it would have been even harder not to. As difficult as it is being at the hospital day in and out, it's also where we spent all of our time with Charlotte and Oliver -  and I get to feel a little closer to the memories of them by being there.

Last week the word "triplet" mysteriously dropped off of Eliza's list of "issues" that are read off every morning during rounds. That bothered me more than I would have guessed. She went from "24 week triplet" to "24 weeker." I mentioned that I wasn't a big fan of the change to one of the nurse practitioners and the omission was corrected. Now every morning when I hear "24 week triplet" it brings a small smile to my face knowing that Charlotte and Oliver won't be forgotten.

Cuteness

A rare look at Eliza's uncovered face - she's giving us her best grumpy old man look.

And this is Eliza trying to figure out how to escape her assessment.

And kangarooing with Mama

Love that face!

How IS baby doing?

Heather touched on this topic briefly in a previous post but I think it's worth talking about in more detail. It's unbelievably hard to answer people when they ask us "How is Eliza doing?" - or worse, for those that we haven't talked to in a while, "How are the girls doing?", "How are the babies doing?", or even "How is the pregnancy going?"

From so many people, this question seems intended in the same spirit as "What's up?" or "How are you today?" - no real honest answer is expected, rather a "Fine" or "Just great, thanks" is the norm. I've caught myself giving this kind of answer by reflex (mostly to near-strangers), but it makes me feel terrible afterward - I feel like such a liar for having said such a thing.

How much honesty is too much, though? When those who are reasonably up-to-date (co-workers, friends that we see regularly, etc.) ask, we try to give a bit more detail - "Eliza is having a good week, she's breathing well and they're increasing her food every day to get her to gain weight" - but even that is painting perhaps an overly optimistic picture. Sure, she's breathing well but they're concerned whether the CPAP mask is damaging her skin and lungs, they're increasing her food every day but they're concerned about the increased food input overloading her already compromised digestive system or possibly even causing NEC, her weight gain isn't as consistent as we'd all like (over the last two days she's lost 70 grams, for example...) we're concerned about the amount of hydrocortisone that she still needs on a daily basis to keep her blood pressure up and her kidney function strong................. but geez, if we answer an innocent question like that with all of the current issues, concerns, and fears that she still has, we're sure they'll never ask us again! They don't really want to know all that - they just want the good news, the rosy picture, the optimistic viewpoint, right?

It gets even worse when we're talking to someone who doesn't know about recent events (or not so recent - Charlotte died a month ago tomorrow...!?) - when someone asks "How are the babies doing?", when we break the news about Oliver and Charlotte, we can see the listener crumple, and we feel compelled to add "But Eliza's doing great so far!" or some similar upbeat conclusion just to offset the bombshell that we just dropped on them. Cause really, who wants to be responsible for completely shattering someone else's good mood?

It's very isolating, to be honest - it feels very difficult to talk openly to anyone else about how things are really going. We feel compelled to put on a brave face, to describe the situation with an optimism and generalization (or even distance) that we don't really feel. We know people care about us, but there's so much that we have to feel, experience and process every day, and so much that changes for Eliza each day, that it's simply not possible for us to explain in a few sentences to anyone who isn't already immersed in the situation.

At least the other parents in the ICN mostly get it. When we ask one another "How is baby X doing", the response is always appropriately qualified when it's good - "She's having a good day so far today" or "He's healthy and comfortable at the moment". They at least understand, as do we, that there's always storm clouds on the horizon, and things could change for the worse at a moment's notice.

Monday, Monday

Dear Eliza,


Just because we talked about how great you were doing and bragged on you all weekend does not mean we think what you are doing is easy. You really don't have to demonstrate how hard you have it by having a truly terrible Monday. Getting a little less attention from the professionals because you are doing better really is a good thing (more food, less poking!), I promise.


All my love,
Mom

---

Eliza had quite a day on Monday. Basically she was running low on blood (all those heel sticks for lab work really add up) and really needed a transfusion. The nurses didn't clue in because she wasn't showing any of the typical signs of this (brady's and desats). This seems to be just how she is - even when she's been really sick before, she hasn't had too much of either of those. I knew something was wrong though because she had been very still all morning which is unusual for her since she is a feisty baby. Her color was also a little off and by the time her lunchtime assessment rolled around she was looking really bad to me. She was slack jaw and a nice shade of grey. I pointed this out to the nurse who agreed. Thankfully everyone jumped to action since when she starts to get sick she can progress to REALLY sick very fast. Her BP was plummeting so they had to almost max her out on dopamine (hypotension medication) to stabilize her until the blood arrived and the transfusion started to work.

Once the transfusion kicked in, they were able to start weaning her off the dopamine pretty quickly, and she was back off dopamine by 9:30 that evening. But she had to be NPO (no food!) for as long as she was on the dopamine, and for four hours after the transfusion too. When they checked again, her hematocrit (level of blood in her system) was still not real high so they gave her a second transfusion.

She finally started to look better Tuesday and much to Eliza's happiness they started her food back Tuesday night and will be ramping up to her previous amount over 24 hours.

This time I think Eliza made her point very clear and a few things have hopefully been learned by all:

1. Girl likes her blood. Normally they only transfuse when the hematocrit gets below 30, but her last reading a few days ago was 31(but had dropped to 26 by the time they started the transfusion). So the new rule is when she gets below 35, she gets a transfusion. Maybe she gets to be a vampire for halloween ;-)
2. Bradys and desats are her last resort to show that she's not feeling well. To catch things earlier, attention needs to be paid to activity level, color, and general appearance.

HIPAA foolishness

One of the more comical yet frustrating aspects of visiting the ICN has been this. Each room at the ICN holds up to 4 babies, so at any given time Eliza is sharing a room with two or three other babies, ranging from tiny micro-preemies like her, to near-full-term newborns who only stay for a few days, to older and bigger babies who are in for the long term due to severe health issues. Although there's a fair amount of turnover and occasional relocations from room to room, we more often than not have had a particular roommate for days to weeks at a time.

However! Despite spending hours a day in the same room with these babies for days, without even a partition or curtain between Eliza's incubator and theirs, the nurses cannot tell us anything about the other babies' health issues, current status, or recent milestones, due (I can only assume) to HIPAA privacy regulations. We can see at a glance the little info card on each bed (which shows their name, birth date, birth weight, and parents' contact information), and we can look at them and see that they're on bili lights at the moment, or connected to a ventilator today when they were on the CPAP yesterday, or see that the nurses have to put on disposable gowns when handling this baby (meaning this one has something contagious) - but we can't ask even the simplest questions like "How's that baby doing today" and expect an answer from the nurse.

I know I tend to be a curious (nosy?) person by nature, so perhaps my viewpoint is not typical, but I think it would often be comforting, or at least informative, to know what's happening with the other babies that we see every day. Are they having similar issues to what we've been through? Are the different issues that they're facing ones that Eliza will have to deal with in her future? Are they improving day to day, staying stable, or declining?

It's especially strange and disconcerting whenever we walk in to Eliza's room and find that where one of her roommates was yesterday, there's now only an empty berth or even a completely different baby. Did the other baby get to go home? Did they transfer it to a different room (for whatever obscure reasons they have for rearranging the babies - better feng shui?)? Or did something terrible happen? The nurses never say.

At least some of the babies have actively involved parents whose visiting schedules match ours, so we can talk with their parents, swap stories and medical updates, and learn about them that way. Some of Eliza's current roommates are lucky this way, and it's been very helpful to be able to have someone to talk to who's dealing with similar stuff as a parent. But it makes me wonder that much more about the babies whose parents we don't see or get a chance to talk to. What's their story?

Kicking Butt, Taking Names

Eliza is having a great week! She is eating ...and doing well with it. By "eating" I mean she is getting milk through a tube down her throat and directly to her belly. Not too satisfying for her since there isn't any sucking involved but it gets the calories in and gets her insides working. Finally, all that breast pumping is coming to something! (Nothing is more annoying than being strapped to a pump every 3 hours and then dumping the milk cause baby isn't eating and there's no more storage space!) We bought a small chest freezer this week so we have more space for saving - though the freezer is taking residence in Eliza's room since we are short on house space as well. A freezer in the nursery - that makes sense right? We thought so. ;-)

Anyways, back to Eliza kicking butt.. she's gained 90 grams this week! That's around 3.5 ounces making her 1.5 pounds. She finally weighs more than she did when she was born! Glenn and I both got to kangaroo with her again this week. (We had been unable to for the past couple weeks due to Eliza losing more weight and getting sick because of her PDA.) She did really well with it - didn't drop her temperature and only forgot to breathe a couple times. Progress!

She is also starting to get a little more vocal. Most of the time its only when she is really upset about something - like when they removed her bandage from her heart surgery this week. It's such a tiny little sound, like a baby bird whimpering, but it gets a big reaction from us.

Eliza got her first actual taste of milk yesterday and it was the most amazing thing to see. Her nurse gave her a tiny drop before connecting the milk to her stomach tube and I wish I had the camera ready to get her reaction. Her whole body spazed, she rolled her eyes around and smacked her lips and stuck her tongue out like "what was that man, give me some more." It was the cutest thing she's done yet and me and her nurse were grinning ear to ear. It's the littlest things, so cute.

Another Education

Tomorrow will be 6 weeks of spending every day at the hospital - staring, hoping, and praying for 3, 2, and now one tiny baby. To say it's been a rollercoaster ride just doesn't come close to accurately describing our experience so far. Most of the time I'm not sure how I feel - when people ask how I am doing I'm never sure what words come out of my mouth. Figuring out how I feel requires more reflecting than I have the energy for at the moment.

Eliza keeps me going, that I know for sure.

When we first had the babies, walking into the Intensive Care Nursery was so hard and completely overwhelming. I didn't know what to do with myself. Looking at them, I felt responsible for everything they were having to fight through and all of their battles made me angry. Angry at myself for not being able to keep them in longer and angry that no matter what, we ended up on the wrong side of the percentages. I could only stand by their isolettes for short periods of time before having to take a break. During the doctors' rounds, the lists of problems that each of the babies had completely overwhelmed me, along with all of the numbers and acronyms.

These days one of us spends all day sitting by Eliza's isolette. The list of conditions during the doctors' rounds make sense to us now and the numbers help us to understand how she is doing. Now, I hate to miss rounds since it's where we get all of the facts versus someone else's interpretation of how she is doing. I know more people, and how they relate to Eliza's care. I know more about what we can expect, and if we don't get it, who to ask. We know which beeps are important and which are just annoying. It's amazing how these little things make you feel better and a little more in control. Her medical team (at least the consistent ones) have come to realize that Glenn and I want specific information and don't want things dumbed down for us. We are beginning to form relationships and speak using jargon we'd never heard 6 weeks ago. It's been a hell of an education so far and I know we have a lot more to go. It's one I would have been happy to have never experienced but you do what you gotta do, right? :)

Eliza's tiny foot in my mom's hand while she helps the nurse.

I'd like to introduce you to...

...the eyes we won't ever be able to say no to.

Eliza made it through the surgery pretty well. She was in some pain the day after which we hated to see but we tried to make sure what she felt was minimal. The surgeon commented that her PDA was pretty big when he got in there so the surgery should really help with her progress. The frequency of drops in her oxygen saturation and her heart rate have decreased significantly which seems like a really good sign.

Eliza's plan for the weekend was to "blow and grow"(we've learned so much medical slang from our short stint at the hospital). Meaning they aren't weaning her off the ventilator too fast so she can conserve calories, start feeding and hopefully gain weight. Saturday she got 2.3 mL of milk every 6 hours and today she is at 3mL.  So far it seems like her gut is handling the milk fine so that is great news for her ostomy.  These are really tiny amounts but every little bit helps at this point. It's so hard to watch her getting thinner every day. 

Eliza's nurse made her a cute little bow before her surgery - and stuck it to the side of her head. :) We are finally starting to get a more regular team of nurses which is really great! It has been very frustrating to constantly have a nurse that had never seen Eliza before. A lot of her symptoms and progress have to do with how she is doing from one day to the next so you can imagine how difficult that is when there was little consistency in people. Duke has a ICN nursing staff of over 200! A couple of her primary nurses have brought her little gifts -like in the picture above with her tiny stuffed puppy that hangs out in the isolette with her.

Surgery 2.0

Eliza is on the books for heart surgery tomorrow. Specifically, patent ductus arteriosus ligation. The PDA I mentioned in the previous post did not close with the treatment of medication over the weekend. A lot of times with tiny to small PDAs, surgery isnt necessary immediately - they can give it weeks, months or even years for the baby to get bigger as long as the PDA is not affecting their health. Unfortunately for Eliza her PDA is too big and is giving her a rough time. Since this open valve is diverting too much blood from where it should be going, her body is having to work extra hard and she is worn out. After a pretty terrible night and day she has been taken off the CPAP and re-intubated (no more elephant trunk for now!) and also put back on blood pressure medication. For now, these things are helping to keep her stable until the surgery tomorrow. We hate that her condition is bad enough to require surgery but are glad that its a relatively common surgery performed on small babies like Eliza. They have told us that she will most likely get sicker for the 24-48 hours after surgery so these next few days are going to be tough, but for most this surgery dramatically helps with growth and health -- which is exactly what she needs!

Just try to imagine working on the heart of a one pound baby and putting a tiny clip on one of the arteries --that will stay there for the rest of her life! I mean how is that even possible?! It blows my mind.

Back with another update afterwards -- Send strong thoughts Eliza's way!

One Month Old

Eliza is one month old today! Its seemed like both an eternity and an instant of time.

I was hoping that this would be a happy post about what a easy week we've had and how we've been able to loosen our grip just a smidge. Which is all true - I even got my hair cut this week for the first time since I went on bedrest 4 months ago! Oh yeah, that felt good. :) 

But we got news today that Eliza has a moderate sized patent ductus arteriosus (PDA). Basically there's a valve in the heart that is open while babies are growing in the womb but is supposed to close at or before birth - hers didn't close and is still open. They are going to treat her this weekend with medication but the medical team thinks it is unlikely that will work. If the medication doesn't work then she will have heart surgery. In addition, this diagnosis delays her feeds yet again. There has been one reason after the next for the last 3 weeks for why she can't start receiving milk. Combine that with her continued lack of weight gain and it starts to get very upsetting and frustrating! I am hoping that she doesn't have to go through surgery again but we will know more on Monday.

Other updates from this week: Eliza is off the ventilator tube and on the CPAP! She has been off for 5 days now. This is amazing because for someone her size they only expected her to make it one day before having to be re-intubated. Too bad that the extubation happened rather traumatically while I was kangarooing with her! Neither baby nor mother enjoyed that much. The video clip is during the moments between the tube being removed and the CPAP being placed. We got to see her precious face!

Eliza with the CPAP. Looks a little like an elephant trunk. :)

Kangarooing

Glenn and I both got to experience Kangaroo care for the first time this weekend with Eliza.  It was the first we got to hold her and it was magic! For Kangaroo care the baby is placed on the parents chest skin to skin. It helps to regulate babies temperature, breathing and encourages bonding among other things - all being positive. :) This couldnt have happened at a better time. We were all feeling very rough after the tragedy of losing Charlotte and Eliza's nurse knew exactly what we needed. Thank you Marie!

I got to hold her on Saturday and Glenn took pictures. There is a minimum time requirement of 1 hour for Kangaroo care since it uses up a lot of the babies energy to be moved from the isolette and get settled in. As long as the baby is tolerating it ok there isn't a maximum time limit. I am looking forward to spending many hours hanging out with Eliza!

And it was Glenn's turn on Sunday.

Charlotte

Once again, the worst has happened. Our daughter Charlotte has left us, joining her brother Oliver. She passed away early in the morning of October 1st after two and a half days of unexpected declining health. We are grateful that she was surrounded by family at the time of her passing, though that doesn't make it any less difficult for any of us. She was only with us for three weeks, but it feels like much longer. We mourn the loss of all of our hopes and dreams for her and our future together. Our hearts ache for her and we miss her so much.

Goodbye beautiful baby girl. You will always be loved and cherished.
















Forever in our hearts, thoughts, and memories
September 8, 2010 – October 1, 2010

Oliver

Our son Oliver (Baby C in previous posts) passed away on the morning of September 11th at 3 days old. Although he fought hard since his birth, he could not win the battle against his many illnesses.  We want to do a memorial for him, but it's just too much for us to handle right now. We're torn between mourning his loss, celebrating the birth of his sisters, and worrying about their own challenges and health troubles. For now, here are some of the few pictures we have of him.

We miss him terribly. 

"If love could have saved you, you would have lived forever."

September 8, 2010 - September 11, 2010