A Lot to Swallow!

Hi everyone,

This - the 17th week of her life - was a big week. Alexandra needed to undergo several tests to clarify what is going on with her ability to swallow and to see the anatomy of her esophagus, stomach, and first little bit of her small intestines.  The need for these tests is a good sign because remember we couldn't even dream of doing them just 1 or 2 weeks ago.

Her anatomy

We're happy to report that the esophagus has kept itself open just nicely.  There's always a chance it could have grown too narrow or developed a leak... But it didn't! Her stomach and first part of her intestines also look normal.  For those of you in the medical fields, we did an upper GI and an esophogram.

Swallow Study

Once we knew she had the proper anatomy to bottle feed, we had to make sure her body could "coordinate" everything from sucking, to actually routing the milk into the stomach (without any detours to the lungs, sinuses, or other off limits places). The test gave us mixed results. On one hand, the liquid she swallowed went where it was supposed to go.  However, getting her to actually allow a bottle in her mouth was a problem.  She has been rejecting anything and everything in her mouth lately, including her Binki.  So we interpret this as once she learns to accept things in her mouth, she should be ok.

Reflux

Alexandra has pretty intense reflux.  How bad is it? Vesuvius and St Helens come to mind. The test wasn't perfect... She had a tube going into her stomach (which keeps a valve open, allowing stomach contents to come back up). Also, she was laying flat... This is something she will never really be able to do.

Big Picture Stuff

Alexandra has been requiring a bit more oxygen over the last few days.  This could be a harbinger of things to come, or it could be because she's had some busy days.  Putting the extra oxygen together with all the test results is anything but easy.  On one hand, it could point us back to the fundoplication surgery.  However, she has several features that usually go against the surgery.  Those decisions are for another time...

Pictures

Alexandra and Mom relaxing before tests in radiology

Hanging out with Dad Friday night

Oooooh, look!  My mobile thingy is spinning again!!!!

16 weeks old!

Hi everyone,

Alexandra continues to do very well.  She has a few issues we still have to sort out, but here's the gist of where she stands:

Breathing

Her breathing continues to improve.  She came off CPAP this week, and is now on something called hi-flow nasal cannula.  This setup includes a plastic tube taped to her cheeks with prongs stuck in her nose.  Everyone predicted she would find this more comfortable than the mask, but she doesn't like this either.  However, the fact that she's on this says she's still keeping her lungs (and trachea) open on her own... this is a very big deal!  We are slowly backing down on how much air flow she's getting, but so far so good!

Stomach

You may recall her stomach muscles grew too much, and two weeks ago she needed surgery to correct that.  Since then she has been getting a continuous supply of milk into her stomach.  If you think about it, babies normally get a whole bunch once every few hours ("bolus feeding").  She's getting that "whole bunch" spread out over time (continuous feeds).  She has been vomiting and spitting up some, but it is very hard to tell if it is because of her original EA|TEF or if this is just normal baby stuff.

Sometime this week she is going for a "swallow study".  This is essentially a moving x-ray that watches how her insides move liquids of varying consistencies down the throat and into the stomach.  Hopefully everything goes to (and stays in) the stomach.  If we see signs of the liquids going elsewhere, we'll have a new issue to deal with.  If everything is okay, we can start to transition her to "bolus feeds" over a week or more.  We have to get her stomach used to the higher volumes of liquid... So that she can take a bottle like a "regular" baby!  

Once we know the results of the swallow study (and what the next step is), we'll let everyone know.

Personality

Alexandra continues to show us more of her personality.  She really likes to smile despite all the stuff we do to her!  She looks like she is going to be a very (VERY) determined girl.  Personally, I think she's already figured out how to flash her eyes to keep your attention, but what do I know?!  She's definitely a Daddy's girl.

Pictures

Two grandparents got to hold her for the first time this week... Check it out!

Just had a bath; mom is drying me off!

Grand Pa's first hold

Abuela's first hold

Smiles and Other Cool Things

Smiles

Alexandra continues to improve with each passing day.  Since her surgery last Monday, she has been "a very different baby".  We've noticed it, her grandparents have noticed it, and her treatment team has noticed it.  To reward her for her hard post-op work, her IV nutrition has been stopped which means the IV in her arm - which she probably thought was a giant spear sticking out of her arm - has been removed.  In turn, she rewarded us with smiles... LOTS and LOTS of smiles.  Sometimes she even giggles a little.  We think she must like smiling and giggling because she even does it in her sleep...  She also seems to be more relaxed and is literally breathing easier.

Other Cool Things

Probably the biggest thing to tell you about is her breathing.  During surgery she had to be intubated again, but post-op she quickly went back to CPAP on her pre-Op settings.  By this morning, all of her labs and x-rays were looking really promising... soooooo...

(imagine the sound of a drum roll in your head)...

(Dramatic Pause)...

Around noontime today, she had her CPAP mask taken off.  This is HUGE!  She's now on something called a high-flow nasal cannula.  This still provides a small amount of pressure to keep her lungs open, but it is so small that she is really doing all the work of breathing on her own.  We'll be on pins and needles over the next few days as we watch to see how she responds, but here's what we saw in the first few minutes:

She was initially a little fussy.  Who knows if she was fussy because we were "messing" with stuff on her head, or if she was just a little taken aback by the suddenly missing items on her head and face (items she may not have liked, but probably cannot remember not being there).  Either way, she fell back asleep.  She didn't appear to be working to breathe and her vitals were all looking good. 

Next Steps

Now that she is not getting CPAP pressure any more, she's gonna face her next challenge: feeding.  There are many questions she'll have to answer... She's been fed via tubes and IV's her whole life, so can she eat?  Will she know what hunger pains are and respond appropriately?  Will the esophagus function properly?  Will she aspirate (get milk and/or stomach juices into her lungs)?  We are hopeful she will be just fine, but only time + Alexandra will tell...

So keep your fingers crossed and check out the latest pictures!

I'm all smiles!!!

Here's what I look like without all that stuff on my face!!!

A Note of Appreciation to YOU!

We wanted to take a few moments to express our appreciation for the incredible amount of support we've been getting.  

This Blog and Facebook

In the beginning we were very reluctant to share information or pictures.  Alexandra was quite small (3 1/2 pounds) and she had a lot of tubes and wires that were quite disturbing to see.  It just was not appropriate to post pictures of such a vulnerable baby.  When you think about it, the whole sick and premature baby "thing" is obviously a very private situation.  Also, we weren't exactly ready to go talking about it with anyone who might have stumbled onto Facebook or a blog.

As time went on, Alexandra grew and got rid some of the unsightly tubes.  At the same time, we became more comfortable with sharing limited facets of Alexandra's life.  We were searching hard for a way to balance these concerns with the notion that Alexandra's friends and family were anxious to know what was going on.  That's how this blog came to be.

Once we decided to start the blog, we were really overwhelmed by the response.  A lot of people told us how they really wanted to know what was going on, but put more value on our privacy than their curiosity.  We completely understood and appreciated the discretion.  In the blog we found a way to share Alexandra's story through our eyes.  It's also a great way for everyone to see her grow through the pictures.

A huge number of people have viewed the blog from across the US and 8 other nations.  The last time we looked at the statistics (noontime on Friday), the blog had been read more than 2,200 times.  We haven't kept count, but there have been hundreds of comments on Facebook, "Likes" for various status updates, and notes of encouragement in private Facebook messages.

It's Not Just the Blog

One of the most important forms of support we've gotten has been from our immediate families.  I know it probably goes without saying, but without family, Suhey and I couldn't continue to work.  That's important because we still can take more time off with Alexandra when she comes home, not to mention the obvious need for income.  Hey, we've gotta pay for all these fancy babysitters!!!

The grandparents have been the biggest help.  All four of them spend time with the baby on a regular basis.  We are very keen to have someone with Alexandra as many seconds of the day as possible.  When they're not visiting her, they're helping us with mundane tasks like laundry or going to the cleaners or picking up something at a baby store.  Some grandparents drive 20 minutes each way EVERY DAY, while others drive an hour each way a couple times a week.  The driving in South Florida isn't pleasant but they do this routinely on top of the time they spend with us.

Certain friends have also been key to holding onto our sanity.  Some of them "break into" our house and jam the fridge full of cooked meals (including paper plates and plastic forks to avoid time-consuming dirty dishes).  They also share some Chinese or pizza dinners with us from time to time.  Others have helped orchestrate a stealth intervention to get Suhey to go to dinner (otherwise she only showers, works, does baby laundry, or occasionally sleeps).  This is of course in addition to the intangible support we get through notes, cards, texts, and voice mails.

Friends on the Hospital Staff

Alexandra has made friends with a fairly large number of people in the hospital.  What can i say?  She's a charmer!  She's got lots of NICU staff that really take care of her like she's their own.  Not all of the NICU staff are like that (some you have to really hound to do their job), so when her "friends" notice this, you can truly see their feelings for Alexandra.  Some of them get downright protective of her; of course, we love that.  Realize I am not talking about the pharmacists and technicians that we know, I am talking about people who we've met since this happened (nurses, respiratory therapists and certain doc).  

As for the NICU's pharmacists and techs, they are also great.  The Pharmacists are always mindful of what she needs, and when she needs something new, the technicians have it there in a jiff.  It's also the pharmacists and techs who make her IV nutrition at an outside company called CAPS.  Suhey used to work at that company, so they also take Alexandra's care very personally.

Wrapping it up

It's been a tough experience we wouldn't wish on anybody.  However, the collective good wishes and supportive actions you all have undertaken is how we've made it this far.  In that spirit, and on behalf of Alexandra, Suhey and I dedicate this posting entirely to you!  Updates on Alexandra will be posted in a few days...

Post-Op / Mid-Week Update

Hi everyone, and welcome back!  Sorry I am a day late...  In case you hadn't figured it out, I write these things mostly at the bedside over a period of several days... so sorry if sometimes the text doesn't flow right and/or the subject-verb agreement isn't the way we learned it in 6th grade...

Post-Op Update

Alexandra's surgery was done first thing Monday morning; she was back in her room by 10 or 10:30.  The surgery was relatively simple and straightforward, and initial indications are that it went as planned.

The result of the surgery should be to allow the stomach's contents to pass normally into the intestine.  This will hopefully put an end to most of her vomiting and some of her spit up.  She has been spitting up a little today, but we were warned to give it a few days and try not to be nervous parents.  I have to admit I feel like a nervous Chihuahua on speed and caffeine pills washed down with a double espresso as I wait out these few days.

After her surgery, Monday was a little rough on her as you might imagine.  She had some discomfort and some anxiety.  The nurses (and respiratory therapists) did their best to keep her cozy.  She was intubated (breathing tube down her mouth) and she knew it; it freaked her out every time she woke up.  Also, she has a pretty sensitive gag reflex (she got that from Dad), so she kept gagging herself, which of course, made her freak out even more.  As the afternoon transitioned to night, she started to get a little more settled.  Suhey spent the night with her to give a little extra comfort that only a mom can.

Tuesday started off just the same as Monday - trying to keep Alexandra comfortable.  By mid-day it was time to try to take the breathing tube out (mostly because she kept gagging herself on it).  She handled being off of it like a champ!  She was put back on CPAP, but at a higher setting (she was 5 for a few days pre-op, and is now 7 post-op).  She rewarded us with her best blood gas EVER (PCO2 = 42, pH = 7.431). In the evening she was moved back into an open crib from a clear plastic incubator.

Wednesday she continued to thrive.  Her blood gases kept looking great.  For the first time EVER (that we can think of), she was not requiring supplemental oxygen... She is making due with the same ole 21% the rest of us live off of.  She had been as high as 35%, so this is a great sign... especially when coupled with very reassuring vital signs.  Her heart rate used to be in the 170's, whereas now it's 110's.  Some of the nurses who know her from weeks gone by have commented how her expressions are much more relaxed now (she often had a look of concern and a wrinkled brow before).

Today she was out of her bed and sitting in a swing.  She absolutely loved it.  She was a smiling factory today for several people.  Maybe she was also happy because her longtime neighor got to go home; he was here 7 or 8 weeks already before she was born...

Her Progress in General

So by now you may sense my enthusiasm for Alexandra's progress.  I have to admit it's a great feeling, but please keep in mind she still has a while to go before discharge.  The way I figure it, she probably has another 1-2 weeks on CPAP.  After she's off CPAP, then we will need to see if she can learn to take a bottle.  Previously we were told that could take 1-2 weeks.  The bottom line is that you shouldn't think it's a setback if she is still here in a few weeks.  If this surgery was the push she needed, she still has another few weeks here... But Alexandra may just be closer to the end than the beginning!!!

Pictures

Still intubated (breathing tube) but finding comfort by holding onto the blood pressure cuff's tubing

Being rocked by Grand Pa

Week 14

Hi Everyone,

New problems, new plans

Tonight we find ourselves asking Alexandra to endure another Surgery. This is NOT the big surgery we were talking about previously (the Nissen Fundoplication). This surgery is for a newly diagnosed problem that is not at all connected to her underlying issues... it's just bad luck.  Here's what happened...

Starting last Wednesday, we started to notice Alexandra was "spitting up" more and more.  At first we thought it was a bit unusual because she wasn't spitting up at all previously.  She probably wasn't spitting up previously because she shouldn't have much in her stomach (remember we have been bypassing her stomach with a feeding tube into her intestines).  The staff kept telling us it's just normal spit up.  However, the "spit up" color was a little dark instead of clear and the sheer volume seemed to make "spit up" seem less and likely.  Also, spit up should not have the velocity that this was having (this was more like projectile vomiting).

We finally reached a breaking point late Friday night and "strongly requested" that we get a physician at the bedside.  Eventually, we took about 2 ounces of liquid out of her supposedly empty stomach.  Mind you, this was 2 ounces AFTER she "spat up" quite a bit.  The liquid was tested for blood, and in fact, there was blood in there (this was the source of the dark color I mentioned before).  Due to the presence of the blood, we started her on a medication to help with the gastritis (the source of the blood).  

In medical terms, we were now aware of two new problems.  First was the gastritis, but we think that was from giving her salts to help her bones form.  All salts can be hard on stomach tissue, so it may have been more than her stomach could handle.  The new medication should allow the stomach to heal itself.  In fact, starting with the first dose, her "spit up" stopped being dark (a great sign she is responding).  The second problem was explaining the large amount of "spit up" fluid in her stomach.  Either she was producing too many secretions or her secretions were not exiting the stomach (a "gastric outflow obstruction").

The answer turned out to be an outflow obstruction.  This means she was NOT "spitting up", but rather her stomach was not emptying normally into the intestines.  As a result, any juices that made it into the stomach (such as swallowed saliva) were accumulating until the stomach couldn't take any more.  There was no place to go but back up (kinda like a volcano).

We found out the answer by coincidence.  Her feeding tube had come out Saturday night.  Replacing it turned out to be hard to do, even when a radiologist tried to do it with with full motion x-rays (fluroscopy).  So at that point, an ultrasound was done to look at the anatomy of her stomach-to-intestine connection (that's where the feeding tube kept getting stuck).

This connection is solid muscle.  It turns out that Alexandra's muscle has essentially overgrown, which means it blocked off the flow of liquid from the stomach to the intestines.  This is why she was essentially "backing up".  The fix is the same for all babies with this condition: surgery.

She has pyloric stenosis (click to learn more).  She requires a pyloromyotomy (click to learn more).  So Monday morning she is going to have the surgery; they will cut some of the muscle away from the overgrown region.  The remaining muscle should be enough to function normally.

Some sliver lining?

Remember how we took 2 ounces out of her stomach Friday night?  We're hoping it's not a coincidence that her blood gas a few hours later was by far the best it's ever been.  We're hoping her stomach was quite simply so full before that it was just too hard for the lungs to expand (there's only so much room in that little body of hers).  If this is the case, she should start breathing so much better.  I do NOT want to get everyone's hopes up too much... but it is possible!!!

Happy 14th week, Alexandra!!!

Pictures

As always, you can click on the picture to make it bigger...

DAD?!  Do you really have to take such a close up?!

Getting a little comfort from Mommy

I am melting you with my eyes, aren't I?