A Wedding Weekend to Remember

A few weeks back, I had to fly to Boston for a few days with one of my clients.  We stayed downtown at a newly remodeled W Hotel.  The freshness of the hotel, mixed with the view of downtown Boston and Fenway Park, solicited a strong desire for a weekend getaway for me and Meg.  We needed a new "weekend to remember."

Having three babies in the hospital pretty much crushed any near-term ability to travel easily, or at all, especially knowing that our girls could begin coming home at any point in the next couple of weeks.  Still, we needed to do something romantic and fun together.  I called her from the hotel and talked about getting away for a day or two.  The girls would be in great hands with the nurses in the NICU and, frankly, how many more opportunities like this would we get.  She loved the idea and immediately decided that we should take advantage of the time and reverse our "decline" invitation to our close friend's, Sarah and Zac's, wedding.  Fortunately, it wasn't too difficult to add ourselves late as attendees, so we bought our plane tickets, booked our hotel room, and prepared for the logistics of traveling to DC while needing to pump along the way (it's harder than it may seem).

By the way, I never realized how consuming and controlling a pumping schedule could be on a new mom's (and dad's) life.  Every hour of each day needed to be planned so we could figure out where we were going to be and if it would be suitable for pumping.

We flew out on Saturday morning, but not before stopping by the NICU to see our girls.  The next several hours were a whirlwind of driving, flying, getting to the hotel, showering, getting ready, and getting lost on the way to the ceremony on Saturday evening.  When we got out of the cab and finally exhaled, we were greeted by smiling faces and a beautiful afternoon that was obviously designed specifically for Sarah and Zac's wedding.

After a beautiful ceremony, we got our dance on and spent a truly wonderful evening with some really great friends, all in the presence of true love.



And just like that, the wedding was over.  I almost forgot how fast they fly by.  Ours seemed like it only lasted an hour, but the pictures prove otherwise.

We wrapped up our trip with a long, scrumptious breakfast at Eggspectations, where we got to soak in some good friend time with our peeps that we hadn't seen since our move to Chicago.

It was a great weekend escape.  We were missing the girls pretty badly when we first landed, but we made it through.  Sometimes, I just need to dance with my wife.

I'll leave you with some parting advice if you plan on traveling while pumping.

#1 - While on the plane, using the hand pump and staying in your seat is way more sanitary than squeezing in the small airplane bathroom to get your milk.  Who cares if the passenger sitting next to you looks at you funny.  At least you won't have 30 people asking "are you ok in there?" when you're hogging the bathroom.

#2 - Be prepared to answer the question "What's in your bag ma'am?  Do you mind if we do a bag check?" when going through airport security with your big breast pump.  Apparently, it looks lethal when going through the x-ray machine and the TSA folks are completely dumbfounded when trying to decipher what it could possibly be.

How Do You Get Here?

I thought about this the other day as I was blog-hopping.  My guess is that most folks probably see the updates when I post them on facebook and then jump here from there.  I also know that others may see when I post in their dashboard view if they have a blogger account.  Others may have a bunch of bookmarks for their favorite blogs and click on them individually each and every day over coffee to get their morning fix.

Well, I was playing around with widgets a couple of days ago and, while trying to add a button about RSV,  I noticed that there was a subscription widget.   I know, I'm probably pretty late to the game with this one, but it did seem like it might serve as a better way to get notified when there's some late-breaking news about the DeBauche babies!

If you look to the left, you'll notice two subscription options right below the "Preparing for RSV Season" button.  I haven't actually used it before, but having just played around with it a little, it looks as though you can make it show up on your Google or Yahoo homepage (would probably work well if it's actually set as your homepage) or it will work with Netvibes or Newsgator (which I have absolutely no clue about).  The other option would be to use the Atom reader with live bookmarks which will put a "Zero to Three in 40 Weeks" bookmark folder at the top of your browser with a drop down that includes all of the recent posts.

If this isn't helpful, don't fret.  I'll still continue to link my posts to facebook.

Thank you for continuing to follow along with our adventure!

By the way, if you have a different way of checking in on the DeBauche babies, I'd love to hear it.

RSV: A Must-Read If You're Planning On Visiting Us Anytime Soon

Dear Family and Friends, 

We’re writing regarding a very important matter: RSV.  For those of you who plan to visit us over the next few months, and even if you are not, please take a few minutes to read this letter.

We want to start by saying thank you for the outpouring of support we have received from everyone. So many people have done so much for us, and every bit of help we have received is truly appreciated.  We are experiencing the biggest challenge of our lives and we’re lucky to be surrounded by so many family members and friends who have shown us so much love and support. 

We’d also like to share an important topic that we recently discussed with our girls' pediatrician.  If you are not aware of RSV (respiratory syncytial virus), you are among the majority.  Most people have not heard of RSV even though nearly every child has had the virus by age two.  For full-term babies, RSV typically is not any worse than a common cold, but for preemies, the virus can be quite different.  Babies born earlier than 36 weeks are at the highest risk for serious complications like pneumonia, bronchiolitis, and other sometimes fatal complications.  Our babies were born premature, are multiples, and had low birth weights; these are among the highest risk factors for contracting RSV and developing serious complications. 

This website offers a great visual comparison of a preemie’s lungs compared to the lungs of a full-term baby: 

www.PreemieCare.org/LungsTrees03-4.pdf 

Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping our children safe during RSV season (October through April).  The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object.  The virus can live as long as six hours on hands and up to twelve hours on objects, and it spreads very easily, especially from child to child.  Studies have also shown that infants pose an even higher risk of spreading RSV to others. 

You may ask, “Can’t they fight it off and build up their immune system? Children need to get sick, right?”  The simple answer is NO.  Since our babies were pre-term, they did not acquire the necessary immunities to fight off infection.  If they contract RSV, they could be hospitalized and develop serious complications. 

We’ll be asking our visitors to follow a few guidelines to help prevent the babies from contracting RSV or any other illness.  We ask that all visitors do the following: 

1. When you arrive, please wash your hands and use hand sanitizer before touching the babies.  
2. Please, if it is possible, get a flu shot.
   
3. Please refrain from coming over if you are currently sick and have not been symptom-free for at least five (5) days, if you live with someone who is sick, or have been in close contact with someone who is sick.
   
4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie’s lungs are VERY sensitive to smoke.  Our doctors and most RSV sites strongly recommend against passive smoke exposure.  So, if you smell like smoke, you will not be able to hold the babies.
5. If you are parents to a baby or toddler, please refrain from bringing them to our house during RSV season.  
6. For older children, they may come and see the babies, but we ask that if there are any known sicknesses going around their classrooms, they refrain from coming until their classmates are well.

Unfortunately, we will not be attending many events during RSV season. Our goal is to make it through this and the next RSV seasons without the babies contracting RSV or any other serious illness.  Their lungs are still very fragile until they are two (2) years old. 

Please understand that this letter is not meant to offend anyone, just simply to provide an explanation.  We hope you understand, and we appreciate your help keeping our babies safe.


We are also providing several resources with additional information about RSV, below. 

www.PreemieCare.org/rsv_resourceshtm.htm www.PreemieCare.org/rsvfaq.htm www.PreemieCare.org/rsv2.htm www.MOSTonline.org/preemieBB/viewforum.php?f=82 

Love and best wishes to all! 

Jeremy, Meghan, Sophia, Isabelle, and Madelyn DeBauche 

(Thanks to MOST for providing this information.  This letter was adapted from one shared on MOST's website.)

Leaps and Bounds

Where to begin?  How about the fact that weeks go by like days used to.  The girls have made so much progress over the last week, I almost feel like I'm cheating everyone by only sharing the most recent updates.  Every day brings a new surprise or an accomplishment.  I'm just going to tell you where they stand today.  Just know that Meg and I felt as excited each and every day with their progress, as we do today.

Also, I know I've mentioned this in the past, but we really do appreciate all of the attention, love, and prayers that we and our girls receive.  Meg and I snuck away for 24 hours to Sarah and Zac's wedding (separate blog post forthcoming) in Washington D.C. on Saturday.  So many people came up to us at the wedding and asked about our girls.  We were told on several occasions that people had their churches and prayer groups praying for us.  We want to say "thank you" from the bottom of our heart and, whatever you're doing, keep doing it!

This past Friday marked 36 weeks GA and they're seven weeks old today.  Sophia is up to 4 lbs 15 oz, Madelyn is up to 4 lbs 11 oz, and Isabelle is up to 3 lbs 2 oz.

Let's start with Isabelle since we probably put a scare into everyone during our last update.  If you recall, the docs tried to start up the trophic feeds without success.  After a few days, they tried again and our little fighter's intestines finally woke up!  In fact, today, she took three of her feeds from the bottle.  She's only getting around 8ml per feeding right now, but she's doing so well with it.  The stool that's coming from the stoma is exactly what they would expect from a breastfed baby--yellow and seedy.

Today also marks the four week anniversary of her surgery.  At this point, the surgeon could decide at any point to reconnect the two ends of the intestines that are currently healing above the surface of the skin.  What will most likely dictate how much longer he allows Isabelle to heal before her next surgery will be when she begins dumping.  I'm pretty sure your mind just started envisioning what I could possibly mean by dumping.  Yes, it's probably what you're thinking it is.  Basically, she's able to digest her current volume of feeding with the length of intestine between her stomach and her stoma.  We'll know she's not able to keep up when it looks the same going in as does coming out.  The docs will keep increasing her volume until it's apparent that she needs more intestine, i.e. the food needs to have a longer visit inside, to help digest the food.

Besides that, her lungs seem to be doing very well and she doesn't appear to be letting anything else hold her back.

Meg loves her skin-to-skin time with Izzy


Mom soothing a fussy Isabelle


Letting gravity do the work during one of Isabelle's feeding


She sure is one tough cookie, but even cookies need to rest


...more resting...


I sure do wish I knew how to make these babies smile on demand. For now, I'll just continue to wait patiently with my finger on the shutter release button and the auto-focus mark set on their eyes.  These girls are really helping me out though.  For no apparent reason, they just start smiling.  You really just have to be there to see it.  It cracks me up.  All kidding aside, I laugh a little every time one of them smiles.  Seriously, just looking at the pics below leaves me snickering.

Madelyn


Sophia


I was recently told that as your children grow, you'll go back and forth over who they look like the most.  Meg and I both agree that, for now, Maddy definitely looks like a DeBauche baby, while Sophie and Izzy definitely have some Carrick genes.

Look at that double chin! She does look like me!


Maddy is doing great! She's still on the nasal cannula and they have been trying to ween her off of it for several days now. She was slightly anemic a week ago which is what precipitated her needing the extra oxygen. Her blood tests looked much better this past Friday, so it's just a matter of time before they can remove that pesky tape from her face. She, like Sophia, is going gangbusters with their feedings.

Her only real issue at the moment, besides needing the oxygen, is some really bad diaper rash.  I'm talking so bad that the nurses actually use a concoction, stronger than Desitin, that I fondly refer to as "butt plaster."  Strange, I know, but you have to see this stuff.  I really think you could patch your walls with it.  It's a mix of Desitin, stoma powder, and a third magical ingredient which is escaping me at the moment.  What's worse is that Maddy's elimination system seems to get stimulated when you apply the plaster, so much so that she literally pooped on my hand as I was applying the paste.  Of course I struggled with what to do with a recently-changed, semi-clean, full-of-plaster baby while one of my hands held her legs high and the other, well, it was a mess and doing nothing.  I eventually worked it out, but it does remind me of my episode with Sophia's diaper-changing that took as long as a Jeopardy episode to get through.

I'm sure she'll get me back for this one day, but since she's so small now and I'm the dad, I'll share a precious moment, caught on disk, of how the nurses help treat the diaper rash by letting her air it out.  Yes, that's my girl on her side, getting a fresh breeze on her dairy aire.



Sophia still seems like she's in the lead to make it home first.  She had an "episode" today while taking her vitamins, though I have to believe that most adults, too, would have an "episode" with that stuff.  It looks bad and smells worse.  Once she goes seven days without a sleeping episode and five days without an eating episode, she'll be taking her first of many rides in our triplet transporter (aka. Nissan Armada).  I told her the good news and she was so excited.  Look for yourself!



She is eating all of her feedings now from either the bottle or breast. In fact, they just moved her from the green nipple (slow flow) to the blue nipple (faster flow). She didn't skip a beat. Maddy is actually on this nipple, too.



The more weight they gain, the bigger their cheeks get. Case in point. Look at these cheeks hanging over my fingers while she's getting burped. I'm sure they'll get much larger, but for us, these girls seem like little porkers right now. They look so healthy.



After the burping comes another nap.



Actually, these last four images are pretty indicative of all of their sleeping and eating cycles. First, they wake up and are full of energy. We prep them for their feedings. They eat. They look amazingly cute as they get burped. They pass out until their next feeding. What a life :)

Great Grandma Jane

Sadly, combined, Meghan and I have a total of one grandparent, my Grandma Jane.  I only got to know my one great grandparent, Great Grandpa Gus, for a very brief time, but I really hope my girls get to know their great grandmother.  She's 79 now and I hope she lives to at least 100.  That way our girls would be able to go to her house when they're 21, and reminisce over an Old Fashioned.  Yes, she's known to put back a drink or two.



She's an amazing woman.  Back in the early 60s, she raised my dad and aunt from the time my father was 10.  She's tall, beautiful, and so much fun to be around.  When I was growing up, she always seemed to know the right things to say.  I'm not sure where that quality comes from, but she has it.  I lived in Green Bay until I was two, but I would always return each and every summer to make sure we got to spend a ton of time together.  She still lives in the same house she did when my dad was born.  Her house is full of memories.  She taught me how to play cards when I was eight years old.  Well, she probably started teaching me when I was younger, but we'll go with eight as the point at which I actually started taking her pennies and nickels playing poker.  I don't think there was ever a trip to her house that didn't involve canned cherries, Cincinnati chili, pineapple upside down cake, Wyoming whopper cookies, or fresh strawberries and sugar. 

Grandma, cooking up something good :)


I remember waking up each morning I was there, just waiting for to get up.  I would have the cards ready on the table, just waiting for her to get her morning coffee, so we could start a game of poker, cribbage, or canasta.  I think it went something like this while whispering ever so quietly, "Grandma, Grandma.  Are you awake yet?  I've got the table set up as soon as your ready to get up.  I'll just be waiting for you in the kitchen."  Of course she had a hard time saying no to her first-born grandchild, so she would stumble out of bed, make some coffee, light up a cigarette, and sit and play with me while I know she must have only been half awake.

Her other morning ritual has always been the Word Jumble and Cryptoquote.  I know the Word Jumble is in most morning papers, but I only remember seeing the Cryptoquote in her paper.  Basically, you're given a quote, written with a bunch of random letters.  Each letter actually represents a different letter each week, but you have to guess and crack the code as to whether "b" equals "m" that day for all of the letter in the quote.  She's become quite good over the years.

Grandma, with her coffee, the Word Jumble, and the Cryptoquote



I have so many other memories from her house, like Santa and his reindeer prancing on the roof, summers spent in her hot tub, going to feed the ducks at the nature preserve, riding the rides at Bay Beach.  I could go on and on, but I also plan on telling these stories to my girls when they get a little older.

The House of Memories


This weekend, my Aunt Patty, cousin Becky, and Grandma Jane all came down for a quick visit. 

My Aunt Patty


My Cousin Becky


Because of the NICU rules, only my grandma was able to come in and see the girls, but our nurse was nice enough to unhook Sophia from her leads and brought her over to the window for Becky and Patty to see.  I hope I'm able to get many more photos of my grandma with my girls.  Below, are just a few of the first ones.

Grandma, if you're reading this, which I know you are, I hope you know how much I love you and how many fond memories you helped create!

Forgot To Post The Bath Video!

Now, this video is truly cute, but it's also six minutes long.  We're not bathing experts by any means, but Meg seems to have it down cold.  So, I thought I'd share it in case anyone needed a quick video lesson.  The few crying parts are pretty funny, mostly because it's now something between a realy baby cry and cat that just had its tailed stepped on :)

Carving Out A Slice

I can't believe I haven't posted anything in over a week. What in the heck happened to all of my time? Our girls aren't even home yet and I'm already finding it difficult to keep up with the blog. Perhaps it's just that it's the end of the quarter again and this will always be a busy time of the year or, perhaps, it's just the name of the game with our new life.

Sophie, Izzy, and Maddy, if you're reading this, you're probably wondering why I'm making such a big deal out of not having shared your latest triumphs in over a week. You're probably just reading these posts in sequence with no real concept of the amount of time between posts. Well, at this point in your life, in 2011, with all of you still in the NICU and family members and friends clamoring for details, a week without an update seems like an eternity. People are on edge! Especially, your nana. I've had some free time at night between work and sleep, but your mom and I have been spending it with you. In fact, your mom is there ALL of the time. So much in fact that they just let her sleep there when she needs to.



So, everyone else will just have to wait....until now. Now, we have photos of bathtime (Sophia), first feedings (Madelyn), and photos with mom and dad outside of the isolette (Isabelle). There's even a "How-To" bath video starring Sophia. I think the last video was of Sophia, too. This time, dad was giving Maddy a bath and mom was busy holding Isabelle, so there was no one to operate the camera. Hey, I can't do it all! Wait, maybe I can. Don't worry Maddy and Izzy, you'll get your chance at bath stardom.

On to the girls. The one consistent theme with all three of them is how quickly they're putting on weight. Sophia is up to 4 lbs 6 oz, Madelyn is up to 4 lbs 2 oz, and Isabelle is up to 3 lbs.

Miss Isabelle has finally stabilized enough for us to be spending some time with her outside of the isolette.  She's still getting the occasional pain med when she visually appears uncomfortable, but at this point she's going days at a time without them. During the times she's off the pain meds she's alert and awake, which makes spending time with her so much fun!  She's breathing with the cannula and a little higher oxygen than what's in room air, and she's been off of the breathing tube for awhile.  We still need lots of prayers for her, though.

She's doing much better since her surgery.  She's recovering very well and back to her happy, itty-bitty self.  We misunderstood what happened with the perforations in the last surgery, and it turns out that they only cut one of them out.  The other 3 were left in because they were in an important part of the bowel and the doctors wanted to give them a chance to heal to see if they could save that section.  The good news is, as of today, the three remaining perforations have healed.  Yeah!  One small victory for Isabelle!

Although there are so many things going well for her, she's not out of the woods yet.  The doctors have tried trophic feeds with her twice.  These feeds are so small their purpose is to stimulate her digestive system even though there is no caloric value to them.  Unfortunately, Isabelle was not able to tolerate even this small volume of feeding.

Over the last few days the doctors have been doing GI studies to check for obstructions and to try to figure out why her bowel is not processing these tiny feeds.  The good news is they have not found any obstructions.  We're waiting on the results from the second assessment still, but at this point the surgeon feels it will show the same results. Not having obstructions is great news, but it brings us back to asking why she's not tolerating these feeds if there isn't an obstruction. The conclusion seems to be that the bowel does not have motility at this point.  The doctors are hoping that over the next few months, as they try feedings again and again, eventually her bowel will start to work. We need this to happen in order for her to sustain life, so once again we need prayers for her to be strong and make it over this hurdle so she can come home with her sisters.   The hopeful news is that the feedings did eventually move through the bowel.  They just took an extremely long time.  Without eating, her liver is getting damaged also.  All of the damage is reversible if she starts to eat before it progresses too far.

Mom, Dad, and Izzy getting some time out of the incubator



Izzy paying some extra attention to Meg



Miss Madelyn has been making a lot of progress, too. The last time I posted, only Sophia had made her first go with the bottle. At the time of this post, not only has Maddy been working with the bottle, but she's also began breast feeding! It's amazing how tired she gets when she actually has to work for her food. I guess it's pretty easy to just lay their and get more plump through the NG tube. When you actually have to suck for the food, it's apparently pretty darn exhausting.

Maddy at the beginning of her feeding



Maddy at the end of her feeding (with some milk making its escape out of the corner of her mouth)



Maddy is also doing very well outside of her isolette and is thriving in the open air crib. On a more serious note, Maddy had a major "blow out" the other night and we missed it! Apparently, in the middle of her diaper changing, she decided that she wasn't exactly done and decided to make herself more comfortable at her nurse's expense, as well as the cribs' walls.

Maddy and her fuzzy hair after the bath



Last up, is Miss Sophia. She, like her sister, kept her nurse busy (and disgusted) with a room-clearing, crib-changing, bath-inducing poop. Is it unrealistic to think that they'll get this all out of their system before they come home?

She's also doing extremely well with bottle/breast feeding. In fact, just today, she took her entire feeding from the breast (~38 mL). Before she can come home, she has to go five days without an episode from feeding. She also has to be awake during her feeding times and take it completely from the bottle/breast so they can remove the NG tube. She's probably not too far off, but probably still has a couple of weeks to go.

Waaaaaay at the beginning of the post, I mentioned bathtime. Well, she is doing great with her baths, especially with the help of the massive heater over her crib....which we won't have at home. She was a little fussy at times, but she sure looks cute. See for yourselves!