More good news!

Hi, All,

So much to report this evening, but I thought we'd lead with an image of the fantastic gift we received today. (left; Thanks so much, C&C, for everything). Perfect for the amazing Ms. Beatrice.

Anyhoo...

First off, food: Turns out that yesterday's barfing was probably caused by a short feeding tube. Ms. Bea has grown a little over the last four weeks, so the old tube-length was causing her food to pool in her esophagus. Blech. So far, so good, for last day or so.

Second: They (the medicinos) took out Bea's PIC (or IV) line. Now the only remaining tethers are her vapotherm (breathing thing) and the leads for her sensors. Her fussing is much more efficient now that she has full use of both arms to push us away.

Third: Eyes. The Little One had an eye exam this morning and it looks like her eyes are developing normally. This isn't insurance, but it's great news, nevertheless.

So that's about it for Beatrice. M&D (Mommy & Daddy) went to a NICU parent round-table this evening, which they found to be quite therapeutic. As it turns out, we're not the only ones who have gone through something like this; and we're certainly not the only ones to experience this type of complete, total, exhaustion. Nor are we the only ones to have nearly burned down a house by leaving a pot on the stove, but that's another story for another, earlier hour.

So... All the best. As always, we love to keep hearing from you; and thanks so much to everyone who keeps helping and pampering us. Couldn't do this without you.

Team Beatrice (Ian)

4 Weeks Old Today!

A Little Hiccup

Morning all,

Well, we spoke too soon regarding the breast milk. It seems that Ms. Beatrice spent the night barfing up her food, so the docs are rethinking the plan. They'll do some evaluation today to see what the problem might be. So, a few steps back.  Stay tuned...

-Team Bea

Moving right along

Hi, all,

So... you know how I said it could be a long time until Bea gets breast milk? What I actually meant to say was, "It could be half of a day before Bea gets breast milk." 

Today's x-rays showed that the fluid in her right side had subsided, so Ms. Beatrice was cleared to start getting a small portion of milk mixed in with her Portagen. There was a bout of regurgitation in the middle of the day, but the new food has been going down pretty well, overall. Fingers still crossed. 

Anyway... Bea had another bath this evening. The event was a little more relaxed than Thursday's soak, and Carol swears that she saw our Little One smile! We'll keep everyone informed of the latest facial expressions as they happen. 

All the best. Keep the comments coming. 

Team Beatrice (Ian)

Back up and running

Hi, all,

Team Beatrice is back up and running with a brand-spanking new MacBook. The old computer has been taken to a repair/recovery shop where our personal information will be extracted and used to establish nefarious lines of credit that will prevent us from ever buying our own home.

I digress, but only slightly. The computer issue illustrates where Team Beatrice's energy and time is focused these days: Beatrice. Normally, the breakdown of an expensive item of equipment would lead to a couple days of trouble-shooting and then, if a replacement were needed, a prolonged period of comparison shopping. But not these days: it took us 30 minutes to decide we needed a new computer and about 15 minutes to purchase it at the UW bookstore. No kidding; our parking ticket was stamped at 12:15; we drove out at 12:32. [Note: one way to speed up the purchasing process is to announce that you want the cheapest, slowest MacBook in the store and you don't want anything else.]

Anyway, back to main event...

Ms. Beatrice is still doing well, but we recently received an ominous reminder of whence we came: X-rays showed a slight reaccumulation of fluid in Bea's right side. The fluid is consistent with what the doctors expected to happen under the best of circumstances, but we still didn't want to hear it. She's scheduled for another round of X-rays tomorrow (Monday), so we'll keep everyone posted. With any luck, the x-rays will show no further reaccumulation and Bea will start getting real food, possibly even breast milk in the next few days. (Fingers crossed: it may be a long time before she gets any breast milk.)

In the meantime, enjoy the picture of Bea in her new onesy courtesy of Grandma Nancy. Check out the green feet: they're little frogs! Hilarious.

Technical Difficulties

Hey, All,
Team Beatrice is still here, but experiencing technical difficulties: Our computer appears to have died, taking a treasure trove pictures and documents with it. We'll be back up and running with images just as soon as we get this problem sorted out. In the meantime, anyone know a good tech support resource?

Team Beatrice (Ian)

Bath Time!

Team Bea fans,

As you can see from the above pictures, Bea took her first bath today. (We were getting a little, uh, crusty.) Exhausting, yet rewarding. Although the pictures capture a squirmy, screamy little Bea, she seemed to enjoy the experience overall and was, generally, quite calm. After the bath, Bea was wrapped up like a burrito, had a little dinner, and went back to sleep. Not a bad evening.

All the best,

Team Beatrice (Ian)

And She Marches On...

Greetings Team Beatrice fans,

Ms. Beatrice continues to make small, but significant, progress. This morning the medicinos decided that Bea was ready to move from the CPAP (a forced-air breathing mask) to a nasal prong that we think is called a "vapo-therm" (or something similar). This is just an intermediate step between the CPAP and one of those devices you see long-time smokers wearing. Given her recent protests (picture screaming, flailing legs and arms) when the respiratory docs tweaked her CPAP, this is a welcome change for all. We'll update everyone as events proceed.



All the best,



Team Beatrice (Ian)

Dirty Diapers

Hi, all,

Beatrice asked me to tell her fans that she soiled not just one, but two, diapers today. Food seems to be moving through quite nicely. Bravo, Ms. Beatrice.

That's all for tonight. Thanks for all the great comments.

Team Beatrice (Ian)

Another Day for Team Beatrice

Hi, all,

Beatrice continues to do well, although she's turning into a bit of fussy-britches. Lots of complaining and squirming, but who can blame her? The medicinos have cut way back on her pain meds, which may explain some of the fussing. It can be hard to hear her cry, but it's good to know that she has the strength to do so.

To save a little time and get a little rest, I'm going to resort to bullet points for the remainder of the day's main topics:

• Feeding/Digestion: So far, no poop. We keep our fingers crossed.
• Swelling: looks like Ms. Beatrice may be accumulating a little fluid around her neck, but we've been told that a little edema is not unusual for preemies. (fingers crossed on both hands)
• Recent reading material: Madeline and Oh the Places You'll Go. I could write an entire dissertation on why Oh the Places You'll Go is the perfect book for Ms. Beatrice. Required reading for all members of Ms. Bea's fanclub. Discuss amongst yourselves.
• Mommy & Daddy's health: M&D were rejuvenated by a wonderful visit from three of Carol's oldest and bestest friends. Thanks so much for travelling so far. Now back to the real world.

That's all for now; and all the best to everyone,

Team Beatrice (Ian)

Team Beatrice Settle in the for Long Haul

Hi, all,

Team Beatrice apologizes for not posting an update on Friday. As Ms. Beatrice begins her long journey, her domestiques (daddy and mommy) will similarly settle in for the duration, and may not be able post on a daily basis. So have no fear: No news is not bad news: Ms. Beatrice is doing fine.

But we do have some minor news for Beatrice's hardcore fans: Ms. Bea began eating (via feeding tube) last night. So far, so good. There is a chance that her digestive system will rebel against the new protocol, but we won't know for another day or two. In the meantime, let's all hope for positive bowel sounds. (Rarely have so many had such good reason to hope for dirty diapers.)

Thanks so much to everyone for checking in. We are truly spoiled to have received so much care and support.

All the best,

Team Beatrice (Ian)

Heart Update

Morning Team Beatrice fans,

Bea and Mommy enjoyed another Kangaroo Care session last night. Beatrice was so calm and snuggley that she didn't even wake up when Mommy put her back in her isolette. The nurse said that skin-to-skin holds have shown to have healing benefits for babies. It certainly helps her parents.

We met with a doctor this morning and he said that Bea's heart problem is "mostly" cleared up from the medicine. The open duct has closed enough that surgery might not be necessary. In the event it reopens in the next few days, they will re-evaluate.

Generally, Team Beatrice is feeling out this next phase of life in the NICU. Little Bea has made so much progress, but we've hesitated really believing that she will come home someday. So this morning, we held our breath and asked the doctor about Beatrice's long term prognosis. The doc said that, at this point, we are mainly facing preemie issues. We haven't schooled ourselves much on these issues as of yet, so we can only report the doctor's comments. Beatrice does have a good chance of survival, but is facing potential serious complications with her digestive system (they will begin feeding her tomorrow via feeding tube), will likely have chronic lung issues until her lungs heal themselves, may re-accumulate the fluid in her chest, is at risk for infection, and could have vision and hearing problems. The list is daunting. Mommy and Daddy just wish they could take some of the hard work away from Bea- she's already put in enough for a lifetime. With all the love coming her way, hopefully she can keep up the fight.

-Carol (on behalf of Team Beatrice)

7-15-08

"Kangaroo Care"

7-15-08 Daddy finally gets to hold his daughter! Kangaroo Care is skin-to-skin contact. Good for babies and parents alike.

Hi all,

We knew it would likely happen, but that doesn't make it any easier to hit road bumps. Beatrice’s nurse noticed a little murmur when she listened to her heart this morning and an echocardiogram confirmed that Bea has a small heart problem. A duct that should have closed at birth did not and as a result she is working too hard to circulate oxygen. The docs are putting her on a medication that may solve the problem. In the event that it doesn't, Bea will have surgery. It isn't open heart surgery, but it is heart surgery nonetheless. We'll know in the next 2-3 days whether this will happen.

She is still on the CPAP, has been given a little more oxygen, and is doing ok. Her red blood count is down a bit, which means she may need a blood transfusion in the next few days. As you can see from the photo, Bea is still under the bili lights for jaundice. Deep breath. All these things are within the norm for preemies.

So, a tough day for Team Beatrice (probably tougher on Mommy and Daddy than Bea, who is snoozing away in her isolette). As the docs promised, we have a long road ahead, even with Ms. Bea's valiant efforts.

-Carol (on behalf of Team Beatrice)

7-13-08 Beatrice in her isolette.

A Few Steps Back

Hi all,



We knew it would happen, but that doesn't make it any easier to hit road bumps. Beatrice has a small heart problem- one of the ducts did not close at birth and as a result she is working too hard to circulate oxygen. The docs are putting her on a medication that may solve the problem. In the event that it doesn't, Bea will have surgery. It isn't open heart surgery, but it is heart surgery nonetheless. We'll know in the next 2-3 days whether this will happen.



She is still on the CPAP and doing ok. Her red blood count is down a bit and she may need a blood transfusion in the next few days. So, a tough day for Team Beatrice (probably tougher on Mommy and Daddy than Bea, who is snoozing away in her isolette). As the docs promised, we have a long road ahead, even with Ms. Bea's valiant efforts.


-Carol (on behalf of Team Beatrice)

New Digs

Hi everyone,

Team Beatrice had yet another big day today (one of these days she'll have to take a breather!). Her mommy and daddy went in this morning for her regular cares and ended up watching the docs take out her breathing tube. We heard her cry for the first time -- it was the most beautiful sound. We all lost it. Little Bea tried to breathe on her own for a few minutes, but was working pretty hard, so they put on something called a CPAP. The CPAP goes over her nose and helps open her airways so that she doesn't have to work quite so hard when she takes a breath. It is a major leap from the ventilator and she will be closely monitored over the next few days to see how things go. It isn't unusual for preemies to have to go back on a ventilator for a bit, since they really aren't supposed to be breathing at this point.

Bea also got new digs today and moved into an isolette (incubator). Though it seems contained, it is a step forward. The isolette provides babies with a warm, quiet environment so they can get much needed sleep. It is hard not to be able to lean over and kiss baby Bea whenever we want, so this new set-up will take some getting used to. Hopefully, as her breathing stabilizes, we'll be able to hold her every few days. Daddy is anxiously awaiting his opportunity to hold his baby girl.

We'll post a pic of Bea in her isolette tomorrow. Keep the emails and comments coming!

For now, to bed.

-Carol (on behalf of Team Beatrice)

7-11-8

7-11-08 Without a doubt, the best moment of our lives.

7-10-08 Holding Mommy's hand

7-10-08 Open eyes!

7/9/08 Story time- Bea has already memorized Runaway Bunny.

Bea's Medical Update

Greetings Team Beatrice Fans,

To say the least, Bea (and her parents) had a huge day yesterday. She surmounted her two major "mid-term" goals by having her right chest tube removed and changing over from the oscillator to a regular ventilator. We didn't expect either of these things to happen for a week or more, so Bea is truly marching to own speedy beat. Chest x-rays show that, so far, she is not re-accumulating significant fluid in her chest cavity. We hope this trend continues or she will likely need another chest tube inserted. She seems to be doing well on the ventilator and is making great efforts to do a lot of the breathing on her own. Doctors hope they can begin to ween her off the ventilator in the next few weeks. In the transition from oscillator to ventilator, Bea finally visited the scale and weighs in at 2 lbs 14 ounces. Bea is our incredibly shrinking baby right now as she continues to expel the extra fluid from her body and skin (almost 2 lbs of excess fluid!). We are so excited to see her little ribs and wrinkles.

Bea also had a visit yesterday from the surgical team, who performed a test to see whether she would need surgery to repair her esophagus. It turns out that her esophagus is normal- so no surgery! Let's see, what else? The surgeon inserted a feeding tube down to Bea's stomach and they hope to begin feeding her soon. She'll receive a special high protein formula for a week or two before transitioning over to breast milk, which is now bursting out of our freezer. Other than all this, Bea is still on a delicate combination of drugs and antibiotics and her blood gasses are closely monitored. We marvel at the team working with her. If all goes well today, they will move her into an incubator, which, ironically, is where the healthier babies are.

Finally, we capped off the day yesterday with something Bea's mommy and daddy thought was, if ever possible, weeks away. It took a team of three, but they were able to move Bea (tubes, IVs and all) so her mommy could hold her. It was the most amazing experience we've ever had. She snuggled right in and snoozed away while her mommy and daddy cried their eyes out.

Here's to Bea.

-Carol (on behalf of Team Beatrice)

Incredible Day for Team Beatrice

I can't possibly elaborate on the emotion captured by the above picture, so I'm not going to write anything tonight. More information to follow tomorrow.

Thanks again to everyone who has commented and emailed. Keep 'em coming.

Welcome to the Team Beatrice Blog!

Hey, All.

Team Beatrice welcomes you to the 21st century via our shiny new blog. Our email list was getting out of hand, so this format should allow us to give more people access to the latest and greatest news about our favorite NICU patient. It will also allow us to post pictures without clogging everyone's in-box.

Feel free to pass along the url to whomever may be interested.

So... down to business.

Before beginning the substance of today's entry, Team Beatrice needs to remind everyone where we are: our little Bea is still critically ill and has a long way to go before anyone can think about upgrading her condition.

That said, Team Beatrice has recently become more optimistic about Bea's long-term chances. Last night (or was yesterday?), Bea's doctors removed her left chest tube and she appears to be dispelling increasing amount of fluids on her own. In fact, her mommy had to change her diaper three times in five minutes this morning because she kept peeing through it. Furthermore, we can now see Bea's little ribs, and she appears to be attempting to breath on her own.

Continued thanks to all who write with words of kindness and encouragement. Bea's got a long haul ahead of her, but this amazing community is giving her, and her parents, the strength to go on.

Much love,

Team Beatrice.

Old Posts

July 9, 2008

All,
Team Beatrice is taking the night off from our regular email update. Have no fear, all is fine; daddy just can't keep his eyes open.

Also, because it looks like Team Beatrice may be playing multiple innings, we'll soon be transitioning to blog format. Will keep everyone posted.

Have a great night.

Team Beatrice.


July 8, 2008

All,

Team Beatrice had another quiet day today, so we'll keep it short tonight...

Beatrice started out the day with low blood pressure due to some dehydration. However, she perked right up after receiving a few magical drugs whose names her daddy can't possibly remember: Dopaphedrinazic, phenalagranazapine, LSD... I have no idea. Anyway, all was relatively well with the world when I visited her at lunch to read her a story (I highly recommend, "Guess How Much I Love You"), and Beatrice's mommy was similarly privileged to spend an hour with her this afternoon "supervising" diaper changes, x-rays, and temperature-taking.

The day ended with the elder members of Team Beatrice taking grandma out for a much-deserved, but nearly overlooked, birthday dinner. Sadly, Beatrice had plans for the evening and was unable to attend, but I stopped by the NICU afterwards to tell her about it. While talking to the nurses, I learned that Beatrice does not like to have her feet touched by anyone.

Also... in more mundane news... Team Beatrice has relocated its command center to our house, where we'll be until at least Sunday, when we're again eligible to stay in a family room at the hospital.

... and that's all for the evening. Our best to everyone,

Team Beatrice.


July 7, 2008

All,
I'm happy to report that Team Beatrice doesn't have to much report this evening. In the words of one doctor, Beatrice is now charting the course, and we're just seeing where she takes us. By making it this far, she has defied so many predictions and expectations that she's become a bit of a celebrity in the NICU. (No more nitric oxide, less oxygen demands, touch toleration, etc). Last night Ms. Beatrice opened her eyes and, if I didn't know better, I'd swear she looked right at me to say, "What's happenin', daddy-o?" However, Team Beatrice (medicinos and family alike) continue to be guarded in their long-term outlook. We still don't know enough to make any predictions.
And so we turn our attention to the taller members of Team Beatrice - the power forwards, if you will. Carol is recovering nicely, although tired from getting out of bed every three hours to pump milk. In general, the last two weeks have taken a toll on both of us, but we remain buoyed by the immense strength of our daughter and our friends. Both mommy and daddy are grateful for everyone's kind words and attention; much love to you all.
Will send more pictures ASAP.
Team Beatrice

July 6, 2008

All,

Just another brief update from Team Beatrice:

As of this afternoon, the medical members of Team Beatrice are very enthusiastic about Bea's short-term outlook. They've been able to dial down the NO2, oxygen, and ventilator settings. Most significantly, for me, is that she is now tolerating touch enough to let us help change her little diapers and take her temperature. (I don't think a father has ever been so excited to change a lousy diaper.)

So... Our next major goal is to get Bea to a week. By then, the Team Beatrice M.D.'s hope to have some idea about her chances over the longer term. Until then, I'll keep writing everyone with updates about the minutiae of our lives.

Team Beatrice (Carol, Ian, and Lil' Bea)



July 5, 2008

All,
Just a quick update on how Ms. Beatrice and her mommy are doing.

Beatrice: I'm happy to report that Little Bea is hangin' tough, and that the doctors were able to turn down the amount of oxygen they were giving her yesterday. However, as the hours and days go on, we are beginning to get a clearer picture of the formidable obstacles that she is up against. Will keep you posted as we know more.

Carol: I am also happy to report that Beatrice's mother is doing so well that we're getting kicked out of the post-partum unit and will be moving to a NICU family room for the next three nights. We live only a couple of miles away, but we're just not ready to be so far away from Bea. (Regardless of where we are staying, I look forward to sleeping in an actual bed again for first time in two weeks.)

Thanks again to everyone who has written and called. Your support has been invaluable during this time. With a little luck, we'll be ready to start returning more phone calls and seeing more people very soon.

Love to you all,

Team Beatrice

July 3, 2008

All,

The day has been exhilarating, confusing, profoundly sad, and then exhilarating again. Because of this, I am typing with my last ounce of strength, so please forgive me if I keep it short tonight.

Our beautiful daughter is hanging on. At 11:00am this morning, nearly 24 hours after Beatrice was brought into the world, we were told that our daughter had taken a turn for the worse and that she was experiencing a slow decline and that only one more thing left to try. With this in our minds, we met with our family and counselors to prepare for the inevitable.

However, I am happy to report that the final option, nitric oxide (oddly enough) was enough to keep Beatrice with us long enough for her daddy and mommy to get to know her and tell her that she will always be loved. In fact, Carol and I were able to read "Runaway Bunny" to her before turning in for the night (although I missed the entire story because cried through the whole thing; somebody needs to tell me how it ends).

Beatrice's prognosis is still very, very grim. She is absorbing oxygen much more efficiently with the nitric, but the ventilator is still working very hard for her and her chest cavity (but not her heart) continues to fill with fluid. Health-wise, our only consolation is that the doctor's are doing their best to keep her pain-free.

In the end, if Beatrice passes this evening, or tomorrow, or the next day, we'll have invaluable memories to keep us going when things get difficult.

Additionally, I am happy to report that Beatrice's mother has been making a great recovery.

That's all I can muster this evening. My best to everyone and thank you for all of the great responses.

Ian (on behalf of Ian, Carol, and Beatrice Adams)

P.S.: I'll send a picture just as soon as I get a chance to go home for a moment or two.


July 3, 2008

All,
Just wanted to let everyone know that we're still here in the hospital, but don't have much to report. Carol is slowly feeling a little better, and may be mobile enough soon to head upstairs to see Beatrice. In the meantime, I've been dropping in on Beatrice as much as I can to read to her and tell her how much mommy and daddy love her.

Will let you know if, or when, we get any news. The doctors are are in the middle of a 72-hour "full court press", after which time they will assess her chances.

Ian


July 2, 2008

All,

My apologies to some of you for whom this is the first email you've received from us, as some names didn't survive the cutting and pasting process for the first email (Find first two emails, below; and, as always, feel free to forward this email to the multitude of friends whose email addresses don't appear here due to my negligence and/or Outlook ignorance.)

This morning's c-section went as well as was hoped, and Beatrice Margaret Adams was born at 11:45am after having some fluid drained while in utero. The doctors were able to put a breathing tube down her throat and then immediately took her to the NICU where she is being ventilated and examined. We have not been briefed by the NICU doctors, but it was expected that she would survive at least 48 hours on the ventilator, so we are a long way from being out of the woods.

Carol is now recovering, in more pain and slightly worse for wear than the average c-section patient, but nevertheless very, very strong. There is no end to ways that she impresses me. With a little luck, Carol will soon be lucid enough to see Beatrice and talk to the neonatal doctors about what to expect.

So that's where we are. Oh, almost forgot... Ms. Beatrice Adams is currently 4lb 13oz. Some of that weight may be due to swelling, but she is the most beautiful baby I have ever seen.

Ian

Hello again, everyone,

As of this afternoon at 5pm, the latest news is that Carol will undergo a c-section sometime tomorrow morning. We finally concluded, after another ultrasound and extensive consultation with our doctors, that this is the best course of action.

Thank you all for being so supportive; and I apologize for not returning nearly enough of your wonderful emails and phone calls. I just ask that you think of us tomorrow morning.

I'll send another update when information becomes available.

Ian

Ladies & Gentlemen,

Sorry for the email blast everyone. We needed to start a mailing list to update our friends of the latest news. The list of people that I've neglected to include in the recipient list is probably long and distinguished, so please forward to anyone who may be interested or concerned. (I sometimes fail to add even close correspondents to my contact list...)

For those we have not seen or spoken to recently, the news is this:

Since last Tuesday, Carol has been in the hospital for close monitoring after a routine ultrasound found fetal hydrops in the 28th week of pregnancy. The doctors give the baby a very slim chance of survival, and they are not entirely sure if more time in utero is helpful in this situation. Either way, the doctors don't expect the baby to tolerate more than another week or two in the womb.

That's the clinical diagnosis. Please forgive me for resorting to vague technical language. I am struggling to use the most appropriate, and least tragic, pronouns when describing our situation; hence, I occasionally resort to awkward phrasing, such as "hydrops in the 28th week of pregnancy."

Anyway, we don't know what the immediate next step will be or when it will happen. The nurses hook Carol up to a monitor four times a day for an hour at a time. If the heart rate indicates signs of distress, a c-section will be performed right away. In the meantime, we're weighing our options and trying to get as much information as possible before committing to a course of action.

On the positive side, we are receiving great medical care and lots of support from our friends. FYI: We're in room 502 of the antepartum unit of Swedish Hospital in Seattle.

Will keep everyone posted as things happen.

Ian