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