Gastroschisis Awareness Day

I saw on the Babycenter forum that today is Gastroschisis Awareness Day so I thought I would take this opportunity to send a virtual hug to all the other families out there who have been affected by this rare birth defect, the cause of which is still unknown.  If you would like to know more about gastroschisis or support gastroschisis research, visit http://www.averysangels.org/.  There is a special place in my heart for all gastro babies, who are the strongest, most amazing little people.  Among them are Baby Sarie, Baby Ava, and Baby Anthony, all of whom are in the NICU now and getting one step closer each day to coming home.  I think about you guys every day and my heart yearns for you all to be home with your families very, very soon! 

I was 12 weeks pregnant when we found out about Lucy's gastroschisis at my NT scan.  We were given the option to terminate the pregnancy, try again for a "normal" baby, and avoid all the stress, uncertainty, and heartache that was in store for us.  While I respect every person's decision to do what is right for them, this was never an option for us.  Not for one second.  When I look at Lucy today, it gives me goosebumps to think that this beautiful, perfect little human being could have never been.  What else can I say?  Life is beautiful, we are truly blessed, and if we could go back and do it all over again we wouldn't change a thing, because this was our path and this is how we got our Lucy. 

Here is a video I took tonight.  Nothing special, just a moment in time to celebrate the life of our little miracle baby. We love you, Lucille.

The Many Faces of Lucille

Lucy has been busy practicing a full range of facial expressions.  Here are a few of my favorites:

Concerned.

Okay, no longer concerned.

Silly.

Stink face.

Contemplating her existence.

Al Pacino face.

Awwwwwww :)

Things have been going well at home.  Lucy is a pretty sweet and easygoing baby.  She'll cry when she encounters something she doesn't like, but she'll stop as soon as the problem is fixed.  She's yet to have an inconsolable meltdown.  She really loves to cuddle and will usually stop crying as soon as we pick her up.  Here are a few things she doesn't like:

1. Gas.  She gets a lot of gas.  I'm pretty sure this is a normal baby thing and not necessarily a gastro thing, although I wonder if the gastro makes it a little worse (I've heard this from other gastro moms).  We've learned to recognize when she has bad gas because she'll sit there and grunt and moan like an inhuman monster while squirming and fussing around.  One of the NICU nurses taught us a trick where you pull the baby's legs up over the belly to help release some of the gas.  That usually makes her fart a few times and helps a lot (warning: it can also cause explosive pooping).
2. Diaper changes.  She pretty much hates having her diaper changed and cries through the whole thing.  I guess she doesn't like her nakie bum exposed to the outside world.  Can you blame her?
3. Baths.  Again, not a big fan of being nakie.  See Exhibit A:

Baths, a great time to scream bloody murder.

Other than that, she is a pretty happy baby. :)

Our biggest struggle right now is gaining weight.  At her first pediatrician visit, which was two days after discharge from the NICU, she had gained 5 oz.  Not too shabby.  But when we went back a week later she had only gained 1 oz, for a total weight of 6 lbs, 6 oz.  We had been feeding her whenever she acted hungry, but now at the advice of her pediatrician we are feeding her every 3 hours on the dot (even if we have to wake her up).  We're also offering a bottle of pumped milk after each feeding to make sure she got enough.  Breastfeeding has been a bit of a struggle and I suspect that might be one of the reasons why she isn't gaining as much weight as she should.  She will latch on, but not every time.  It's most likely because she got so used to eating from bottles in the NICU.  We've been seeing a lactation consultant and are now using a nipple shield which she will latch on to every time, but it also makes her work harder to get the milk.  We're trying to wean her off of it but it has been a slow process.  To make things more difficult, I've apparently channeled my inner dairy cow and am making an overabundance of milk.  When Lucy was in the NICU they stressed the importance of pumping every 3 hours since that was the only thing keeping up my milk supply.  Apparently I was a little too overzealous about following orders because according to the lactation consultant, I'm making enough milk for twins.  While this sounds like a good problem to have, it's not.  First, it can be overwhelming for a little baby like Lucy and it causes her to pull away a lot to avoid choking.  Also, she doesn't feed for very long periods of time so she ends up getting too much of the light foremilk that comes at the beginning and not enough of the fatty hindmilk that comes at the end.  Over the past few days we've been giving her more bottles so that I don't breastfeed as often, which sends my body a signal that she's not eating as much and causes me to make less milk.  I think it's helped a lot.  We're really hoping that these new tricks give us better results at next week's pediatrician appointment!

Happy Birthdays

Do I even need to tell you how wonderful it has been having Lucy home?  I still can't believe we're finally all together as a family.  We spent the past few days getting to know each other and trying to establish as much of a routine as possible.  I think the most exciting part has been watching Lucy figure out what life as a baby should really be like.  Instead of being poked and prodded she's being held and soothed.  Instead of being fed tiny amounts of food on a controlled schedule, she's eating as much as she wants whenever she wants it.  When she cries someone picks her up.  When she sleeps it's nice and calm around her instead of noisy, bright, and busy.  Now don't get me wrong - I'm not complaining about the NICU.  The first month of her life had to be the way it was.  There was no choice.  And they certainly made every effort to make it as comfortable as possible for her.  But she has been through SO much and it melts my heart to finally see her living the comfortable life she deserves.  And she has definitely started to figure it out.  She LOVES to be held and is starting to cry when we put her down.  After everything she's been through I feel like she deserves the sun and the stars, so we pretty much hold her all day except for when she's asleep.  I have a feeling we're creating a spoiled monster who is not going to be happy when she has to start sleeping in her own room, but I don't care!  We'll cross that bridge when we come to it.  For now we're here to soothe and calm her whenever she feels afraid, and most importantly, to show her how it feels to be loved.

Yesterday was my 31st birthday and Lucy's 1-month birthday.  Needless to say, I got the best birthday present I could ever want the day Lucy came home.  Can you believe how much has changed in just 4 weeks?

Then...

And now.

We decided to get out of the house and go on a birthday adventure.  Other than two doctor appointments (both of which she aced) we haven't been outside much in the last week.  Our first stop was brunch, followed by an afternoon at the park.  It was in the upper 70s which doesn't happen all that often in San Francisco, especially during the foggy summers. When it's that warm it's kind of your duty as a San Franciscan to spend the day outside enjoying the weather.  Lucy slept through most of it but did wake up for a while at the park.  She had a few fussy moments but for the most part she tolerated the adventure quite well.

First time in the Baby Bjorn. 

Crepes

Park day!

Her belly is also healing well.  Her cord finally fell off today which should make the dressing changes much easier.  The hole is down to the size of a quarter.  It used to be about the size of a beer bottle bottom because they had to stretch it open to fit the bottom of the silo under her skin. I thought some of the other gastro moms might want to see some photos (sorry if they make you a little squeamish!)  We're told that this sutureless closure method usually results in a better cosmetic result than a surgically created belly button.  I think her "belly button" will end up being wherever the hole closes in on itself, but I'm not sure.  It will be interesting to see how it all turns out.   

The hole is the size of the white foam dressing which is held on by a tegaderm film.  The red skin around it is all new skin which gives you an idea of how big the hole used to be.  We change the dressing 1-2 times a day and each time I cut a smaller circle because the hole has gotten a little smaller.

The skin under the dressing looks kind of like ground beef.  We are waiting for real skin to grow over that "pre-skin."  The redness around is new skin, the black thing is the cord (now off), and the yellow stuff is normal discharge.

And finally, by popular request, some kitty pictures.  Goose has been keeping a comfortable distance from Lucy so I don't have any of him at the moment, but as you can see, Maverick has accepted her into our clan...  sort of.

LUCY IS HOME!!!

The day has finally arrived.  After just 26 days in the NICU, the Littlest Warrior came home yesterday.  There simply are no words to describe how happy we are.  We've been through SO much to get to this point.  Six months of knowing about her diagnosis and wondering how things will turn out, 6 weeks of bedrest in the hospital, and 3 and a half weeks of separation from the new love of our life.  And just like that, we are regular parents experiencing the joys and challenges of having a newborn at home!  Our first day was spent staring and marveling at our new roommate, learning her cues, cuddling, kissing, feeding, diapering, burping, and sleeping.  She had so many people taking care of her in the NICU, but I think she is starting to figure out that we're here to stay.  A wonderful adventure is just beginning, and it is absolutely exhilarating.  :)

We'd like to spend the next few days focusing on Lucy and making up for lost time, so I probably won't post every day.  But I'll try not to keep you hanging for too long.  From the bottom of our hearts, thank you again to everyone for your love and support!

Love,
Heidi, Erik, and Lucy

Ready to go!

First time holding a completely tubeless, cordless Lucy.

Saying goodbye.

She loves her swing!

Goose meets his little sister.

Maverick's turn.

Coming in for a closer look.

Friend or foe?  The jury is still out.

Snuggling.

Trying to tell Dad something?

Chillin' with Dad.

The Littlest Overachiever?

I'm starting to think I might need to rename this blog. We tried breastfeeding this weekend and Lucy latched on at the first try and went to town. How amazing is that?! She didn't eat anything orally for the first two weeks of her life, and for the past week and a half she's been feeding from a bottle. But our little superstar still knew what to do. We're on our way to the hospital now, and hopefully we'll be coming back with our baby. :)

Happy Due Date, Lucy!

Today is Lucy's original due date, and she's still on track to come home on Monday! Never in my wildest dreams would I have thought that we'd be bringing our baby home two days after her due date, just like anyone else. Lucy started "demand feeding" today which means that she eats however much she wants whenever she wants it. Erik and I have been running all over town buying last-minute baby stuff, including a new freezer to store the bounty of breast milk I've saved up. We'll go to the hospital tonight and try to breastfeed for the first time! I'm very excited and also a little nervous because I know breastfeeding can be a challenge for any newborn, let alone one who didn't eat for the first two weeks of her life. So we'll see how it goes. If it takes a while that's okay, too. We can always feed her my milk from a bottle. It's been amazing to see how excited people are for Lucy's homecoming! She is such a special little girl who is loved by so many. Like all gastro babies, she reminds us of the strength of the human spirit and the preciousness of life. I've said it a million times, but I feel so, so blessed to be the mom of this Little Warrior.

In the Home Stretch!

Lucy is up to 45 mls per feeding and will hit her target feeding volume in the next day or two.  She's pooping on her own (without the help of suppositories).  She's gaining a couple of ounces a day and now weighs 6 lbs, 3 oz.  The hole is looking great.  Finally, after all this time, we are starting to hear mention of the word every NICU parent dreams of: DISCHARGE!!!  Barring any unusual developments, it is looking like Lucy will go home next week, possibly even as early as Monday!!!  This weekend we'll try breastfeeding to see how she does with "on demand" feedings.  Even if the breastfeeding takes a while she could still go home because she's successfully drinking from the bottle.  They will also remove her only remaining IV, the PIC line that gives her intravenous food, some time this weekend.  Today the surgeon taught me how to change the dressing and gave me supplies to practice at home.  They also scheduled her hearing exam (which every newborn gets before they go home) and a car seat test.  The wheels are officially in motion to get this baby home! 

To be honest, I don't think it's registered yet that Lucy could be home in a matter of days.  I feel like my brain won't let me get too excited until the moment we walk out of the hospital.  When you've been waiting for something this big for this long, it's hard to switch out of survival mode and into celebration mode.  The fact that she might make it home so quickly (less than 4 weeks, when most gastro babies take 6-8 weeks) still seems too good to be true.  I'm sure it will hit me once we get her home, but until then I'm staying cautiously optimistic and trying not to get my hopes up too much.  

Stay tuned for some (hopefully!) major updates in the next few days! 

Snuggling after breakfast

3-Week Report

Lucy is 3 weeks old today and chugging right along!  She's up to 35 mls and they are increasing her feeds by 5 mls every 12 hours.  At this rate she'll be up to the target 60 mls in THREE DAYS!!!  She has been keeping her food down and pooping with the help of suppositories.  I think the doctors and nurses are a little surprised that we haven't encountered any major setbacks, especially with regard to the feeding, because it usually doesn't go this smoothly.  Lucy is earning a reputation for herself as a sweet, cute little girl who's tough as nails.  We are SO proud of her!

The surgeon is also happy with how the hole is healing.  They are back to changing the dressing every day now that the hole is getting smaller.  It started off being a few inches in diameter and now it's down to about an inch.  It's pretty amazing!  The surgeon also said that the hole is not what's keeping her in the NICU - it's just the feedings.  The hole doesn't need to be completely closed before we take her home, and we may even do the final dressing changes at home ourselves.  The only bummer is that her skin is getting irritated under the sticky part of the dressing.  It looks like she's inherited my sensitive, reactive skin.  So she has been a little grumpy after the past few dressing changes, probably because it stings her skin each time they take it off. 

Lucy is having no trouble regulating her body temperature so they moved her out of the isolette and into a big girl bed!  She is the only baby with a crib, and she has the primo spot in the back corner.  So she's pretty much Queen Bee of the NICU now. 

Lucy's new bed

We also spent a wonderful couple of days with Auntie Kate and Uncle Lee, who cruised up to San Francisco after their honeymoon!  They took some beautiful pictures of everyone's favorite new model.  Enjoy! 

Chow time

Sleep-burping

Pay no attention to the outgrown mani

Auntie Kate :)

Uncle Lee :)

Smitten!

I believe this is what the kids call "chillaxin"

Happy girl after a great visit!

   

Kangaroo Care

We've had a GREAT couple of days!  I'm afraid of saying this because I don't want to jinx anything, but it seems like the news just gets better and better each day.  Lucy is now up to 21 mls every 3 hours, and they're increasing her feeds by 12 mls each day.  We feed her with a small bottle now.  She needs to get up to about 60 mls per feeding in order to go home.  She hasn't thrown up since the very first feed.  They also started giving her daily suppositories to help her poop, and they're working!  She pooped yesterday and again this morning.  And she weighs SIX whole pounds now!  

The surgeon changed the dressing over her closure yesterday and was very happy with what she saw.  New skin is forming and the hole is shrinking.  So we're pretty much out of the woods as far as surgery is concerned.  The surgeon said she would be shocked if she needed surgery to close the hole at this point.  I also asked her how she thinks Lucy is progressing and she said she thinks she is progressing faster than average!  It was music to my ears!!!  Things are going so well and I can just feel that she'll be home soon.  All things considered, the past three weeks have gone by faster than I expected.  Even if we have another three weeks left, I finally feel like I'm seeing the light at the end of the tunnel.

And now for the best news of the day.  Because the opening is healing so nicely the surgeon said we don't have to keep her lying flat and still anymore.  So Lucy and I were able to do "kangaroo care," or skin-to-skin contact, for the first time.  I held her against my bare chest for a couple of hours, and it was absolutely amazing.  We hadn't been that close to each other since I was pregnant.  It was odd how familiar of a feeling it was to have curled up against me.  She slept through most of it, but a couple times she woke up and lifted her head looking for my breast. She's no dummy, and she knew there was something there that she wanted.  I was also surprised to see that she's already strong enough to lift her head!  Unfortunately I can't breastfeed her yet because they need to carefully control how much she's eating.  But eventually we'll get there, and hopefully this is a promising sign that she'll figure it out quickly.  Here are some pics of our best day yet. :)

Our first day of kangaroo care

 








 

Superstar Eater

Lucy is doing a great job with her feedings!  She started at 2 mls every 8 hours just 4 days ago, and now she's up to 12 mls every 3 hours.  She loooooooooves feeding time and slurps down her milk in seconds.  We feed her with a bottle nipple that we gradually pour milk into from a syringe.  I can't breastfeed yet because they need to measure out how much she is eating, but I am pumping and storing my milk for her to eat now and later.  She hasn't pooped yet, but the doctors said that will probably take a couple more days because she's not getting enough food to make a poop.  She is, however, farting up a storm, which is a great sign that the intestine is starting to function.  She has also gained weight since we started the feedings!  So far she's gained about half a pound and now weighs 5 lbs, 11 oz.  She looks so healthy and the doctors are really happy about the way the feedings are progressing.  We're trying not to get our hopes up too much, but things seem to be going really, really well!

The news on the closure is also looking better.  The surgeon checks the dressing every day to see if it is staying put.  Ideally they like to keep it on for 4-5 days before changing it because keeping it undisturbed allows the skin underneath to grow faster.  At the beginning they were having to change it every day because it was getting moist and wasn't staying in place.  That's why the surgeon wasn't totally happy with the way things were progressing.  But for the past 5 days or so it has looked great.  It's been dry, flush with the skin around the edges, and staying in place.  They are going to change the dressing tomorrow so hopefully we will know more about how the closure is looking after that. 

Lucy has seemed much more comfortable since we started feedings.  Who can blame her?  She's turning out to be such a sweet baby.  She doesn't cry very much and when she does it's usually not for long.  She smiles now and makes cute little noises.  I'm not sure if she realizes what she's doing but it's pretty adorable.  She is such a good sport considering everything that is being done to her.  Here are some recent pictures, including pics of her first cuddle with Grandpa Charlie.

Lucy and Grandpa Charlie.

   

Holding Grandpa Charlie's hand.

Rockin' the baby beanie.

Arms over head, a classic Lucy pose.

Lucy's best Yoda.