All Smiles :)

Lucy did well with her feeding from this morning, so she got another 3 mls this afternoon!  If she keeps that down they'll try another 4 mls tonight.  Here's what she thought about her 2nd feeding...

This should be illegal.

Also, Grandma and Grandpa are visiting and helping us out tremendously around the house.  Grandma got to hold Lucy for the first time today and Lucy loved every moment of it.  It was what I call a Good Lucy Day!

Grandma and Lucy

Okay.  THIS should be illegal.

Lucy Update

Time for a Lucy update!  Sorry I haven’t been the best blogger lately.  I was pretty exhausted after the wedding (which was wonderful!), and between NICU visits and pumping every 3 hours I haven’t gotten much rest.  Lucy is doing well.  As expected, we’ve made some progress and encountered some setbacks.  The green bile in her replogle tube cleared up enough for them to remove it.  So other than the PIC line in her arm she is now a tube-free baby!  They also started her feeds yesterday, which was a huge milestone.  They started by giving her 2 mls of milk through a pacifier with a hole in it.  She absolutely LOVED it.  She slurped it right up and opened her eyes wide.  She kept it down for a few hours but when we tried the next feed she vomited green bile, which means the milk is not moving through her stomach to her intestine yet (or at least, it’s not moving as quickly as it should be).  So they stopped feeds yesterday and resumed this morning with 3 mls.  So far she has kept it down.  They warned us that feeding is the longest, most frustrating part of the process, and that there are a lot of starts and stops.  So at least there’s nothing unusual about the way things are going.

There is also still the issue of closing the hole in her belly.  The sutureless closure isn’t progressing quite as well as they would like.  Lucy is a really strong and active baby and she strains and pushes a lot when she’s uncomfortable.  Her straining is causing the intestine to pop up a bit and the skin is having a hard time closing over the opening.  They are keeping a very close eye on it and trying to keep her as calm and still as possible, which can be hard at times because she is getting hungry and fussy.  As of now they still think that the sutureless closure will work, but there is a possibility that she could still need surgery to close the hole.  This would be a huge bummer because they would have to sedate her again and put the breathing tube back in.  We’re just taking it day-by-day based on what the surgeon sees.  She has been off the hard core pain meds for a few days, but today they started her on a mild sedative to keep her sleepy and still.  So far it seems to be working well.  

So, the next steps from here are to (1) continue feeding in the hopes that she’ll be able to consume a little more milk each time, and (2) keep her calm and still so that the hole can continue to heal.  

I know we’re all wondering when Lucy will come home.  I wish we knew the answer to that, but unfortunately we still won’t know for a while.  She has to be able to take an entire bottle and poop, and the hole has to close up a lot more.  The average stay for a gastro baby is 6 to 8 weeks.  The surgeon said Lucy’s case is progressing like an average case, and she doesn’t see any reason why Lucy would be out sooner or later than that.  Lucy is 2 weeks old today, so we’re hoping to have her home by early to mid-August.  

Our first peek at Lucy's face without any tubes!

She loves to have her hands up by her face.

Dad giving Lucy her first taste of milk.

A happy camper after her first feed.

A peek at the dressing over her closure.

My sister's beautiful wedding, which I was so blessed to be a part of!

Lucy's First Cuddle

So much good news today.  Lucy's breathing tube was removed this morning and she is breathing on her own like a champ!  She also had a big poop this morning!  With the breathing tube removed we were able to hold her for the first time and hear her cry for the first time since she was born.  I don't really have the words to describe how wonderful today was, so I'll let the pictures do the talking.  We're so incredibly happy.  Life is good. :)

 

Bye Bye Silo!

Today was a BIG day!!!  We arrived at the hospital to learn that Lucy’s intestine was all the way inside and it was time to remove her silo!  Also, the surgeon was able to do the sutureless closure!  They did the closure at her bedside and we were even able to watch.  It was a remarkably simple procedure; they just gave her an extra dose of pain meds, pulled the bag out, and put a dressing over the hole.  It was hard to watch because she was in pain and her heart rate shot up pretty high, but it was better than sitting in the waiting room waiting for her to come out of surgery.  The dressing will be changed every 4 days or so and the hole will gradually close under the dressing over the course of several weeks.  During this time we’ll be able to hold her and she could even come home before it is entirely closed.  So, after all these months, the Littlest Warrior is finally in one piece!!!

Right before her silo was removed.

The surgeon and her team removing Lucy's silo.

Yes, this is the bag that our daughter's guts were in.

Lucille Amelia after her Extreme Gastroschisis Makeover!  The black thing on the side of the dressing is her umbilical cord.

Taking in the moment. :)

Now that she’s not hooked up to the silo they can start to wean her off her pain meds.  Once that happens they’ll take her breathing tube out.  She is still too sedated to breathe on her own.  They are hoping to take her breathing tube out on Monday.  Once the breathing tube is out we’ll finally be able to hold her.  I can’t tell you how much I’m looking forward to that day.  Just thinking about it makes me cry.  Not being able to hold and comfort her is by far the hardest part of this whole thing.

The next phase is the longest part of Lucy’s recovery: feeding.  First we wait for signs that the intestine is moving.  The intestine shuts down when it’s being manipulated like it was in the silo.  Even adults experience this when they have surgery and the intestines stop moving for a couple days.  But now that it’s inside her body it should start to work.  Two things have to happen.  First, she has to poop.  She has passed meconium before, but that was because it was being squeezed out every time they tied the bag down.  Now her intestine has to move meconium on its own.  Second, her replogle tube needs to be clear.  This is the tube that goes from her mouth to her stomach.  Right now it’s removing the green bile waste from her stomach because it can’t go out the other way through her intestine.  Now that the waste from her stomach can go through the intestine, there shouldn’t be any bile in the tube.  Once these two things happen, which could take a week or more, they’ll start introducing small amounts of breast milk.  She can go home when she can take a bottle and poop, but at this point there’s no telling how long that will take.  

Even though we still have a lot of work to do, all I can think about is being able to hold my baby.  I feel like as long as we can hold her it won’t be so bad, even if we still have a long time left in the NICU.  I know we have to be patient, but it’s SO hard to miss out on these first days of bonding.  I’m counting down the seconds to what will surely be one of the best days on my life.  

Lucy should have a pretty mellow weekend so you probably won’t see any updates for a couple days.  However, it will still be a big weekend for our family because my sister is getting married!  The wedding is in SoCal and I was supposed to be the Matron of Honor, but for the longest time we didn’t think I could go for obvious reasons.  But then Lucy came early and I just got the green light from my doctor to go!!  The idea of missing my sister’s wedding was breaking my heart, and I’m SO thrilled I can make it!  I’ll be gone for one day but Erik will stay here to be with Lucy.  For those of you going to the wedding, I’ll see you on Saturday!

Home Sweet Home

This morning I woke up in my own bed!!!  Coming home yesterday was a pretty emotional experience for both of us.  The past month and a half really took a toll on us.  Reflecting back on it, it’s hard to believe what we’ve endured since finding out about Lucy’s gastroschisis in January.  Sometimes it doesn’t really hit you until you have a moment to breathe.  Even though our journey isn’t over, a big part of it is past us.  We’re so close!  

Reunited with one very happy kitty

Lucy is still doing great!  There’s only a little bit of bowel left in the silo, and they expect everything to be inside within the next couple of days.  Then the surgeon will decide on whether to do surgery or the sutureless closure to close the hole.  It’s a case-by-case decision that depends on how the intestine falls back into the body.  We’re really hoping the sutureless closure works out.  

The silo from today.  Getting so close!

After everything is inside, they’ll be able to remove her breathing tube.  They actually tried taking it out today for about an hour, but she didn’t take enough breaths on her own so they intubated her again.  They said not to be worried about it because they were just trying to see if they could remove the tube a little earlier, but they’re not surprised that she’s not quite ready to breathe on her own yet.  Her lungs are mature but the bowel going into her abdomen is placing a lot of pressure on her diaphragm.  She’s also pretty sedated from the pain medication.  They said that she should have no trouble breathing on her own once everything is inside.  It’s really hard seeing her hooked up to the breathing tube because it looks so uncomfortable and she can’t cry, so I’ll be SO happy once it gets removed. 

They expect that everything will be in and the breathing tube will be out by the end of this week.  Then the next step is to start oral feeds.  They’ll start with a very small amount of milk (~ 1 cc) to see if her stomach can tolerate it.  Then they’ll gradually increase the amount of milk and wait for poop.  Poop means that the intestines are functioning (i.e., pushing things through).  Right now she’s passing meconium every day (pre-poop that was in her intestines while she was in the womb), which is a good sign that there’s no blockage in the intestine.  But it doesn’t mean that the intestines are functioning.  There’s no way to tell whether they’re functioning until they fall back inside and we try to send food through them.

 

So for now we continue the waiting game, but we should have more news by the end of the week.  So far everything is going textbook and we haven’t encountered any big setbacks or curve balls.  Lucy is so strong and determined and she’s making her way through this like the little warrior that she is.  :) 

Lucy likes to have her head rubbed.  Since she was breech I used to rub her head a lot when I was pregnant.

Miss Cutie Patootie

 

Good News and More Good News!

I’m thrilled to let everyone know that Lucy is doing GREAT!!!  Words can’t express how overjoyed we are to be the parents of this little miracle of a human being.  She has stolen our hearts and opened our eyes to a whole new world.  I can’t tell you how relieved and grateful we are to have her here with us and on the road to recovery.

 

We’ve been pretty busy and exhausted as you can imagine.  Life for the past 3 days has basically involved recovering, pumping every 3 hours, visiting the NICU, seeing visitors, and resting whenever I can.  I’m working on writing Lucy’s birth story, but for now I just wanted to let everyone know that she is doing really, really well.  The doctors are very happy with her progress.  About half of the intestine that was out, maybe more, has already reduced back into her belly.  Also, she’s ALREADY POOPED!!!  (About 3 times, to be exact).  This is a really, REALLY good sign because it means that her intestine is healthy and is already moving things through, even though it isn’t even all the way back into her body yet.  They did end up giving her a breathing tube just to make sure the bowel didn’t put too much pressure on her lungs, but it is hardly doing any work, meaning her lungs are mature and strong.  She honestly couldn’t be doing better at this stage, and we are so amazed by her strength and stamina.  She truly is the Littlest Warrior.

Update: the poop she's passing now is actually meconium, the "pre-poop" that babies make when they're still in the womb.  There was a lot of meconium in her gut when she was born.  In fact, the large dilated piece of intestine that we saw in the last few ultrasounds was actually filled with meconium.  They flushed a lot of it out before they set her up with the silo, but she is still passing the rest of it through.  So it's a good sign that there is no blockage in the intestine, but not an indication that the intestine is working yet (i.e., pushing things through).  It won't start moving until it's inside her body and we start to introduce food orally. 

From the bottom of our hearts, thank you, thank you, THANK YOU for your prayers, support, and positive energy.  It is working, and we are watching a miracle unfold in front of our eyes every day.  

  

p.s., I’ll finally be going home on Monday, after spending 46 days in the hospital. :) 

All set up in the NICU

Helping the nurse change Lucy's first poopy diaper!  We get pretty excited about poop around here.

Bowel as of Saturday night.  It was at the top of the bag when they first set up her silo on Thursday afternoon.

Lucy recognizes both of our voices.  When she's awake, she'll look for us when we talk to her.

Dad and Lucy :)

 

Here She Is!

Lucille Amelia Mekkelson. Born approximately 3pm, June 21st, 2012. 5lb 4oz.