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.

Lucille Amelia Mekkelson has been born! Baby and mom are doing well. pictures to follow soon.

Delivery Delayed

Delivery of the Littlest Warrior has been delayed because the NICU is busy dealing with an emergency twins delivery. A new time of 2pm has been scheduled so we are now just nervously twiddling thumbs. Stay tuned! - Erik

Having a baby... TOMORROW!!!

Big news people!!!  I had my 3-week growth ultrasound today and the LW gained 1 lb 3 oz.  We're very happy that she's gaining weight!  Her new estimated weight is 4 lbs, 11 oz, so hopefully in reality she's at least 5 lbs.  However, this new estimate puts her in the 4th percentile on the growth chart, whereas she was in the 9th percentile 3 weeks ago.  Also, they noticed a part of distended bowel that is starting to sneak back into the hole.  They don't want the hole to start compressing the bowel.  So... since I'm only 3 days away from full term, they decided that it's GO TIME!!!  My C-section (because she's still breech) is scheduled for tomorrow at 8 am!

We're equal parts nervous and excited.  We finally get to meet this little diva tomorrow!  So many questions running through my head... what will she look like?  How much will she weigh?  What condition will her intestines be in?  Will she need a breathing tube?  When will we finally be able to hold her?  And of course, the biggie: HOW LONG UNTIL WE CAN TAKE HER HOME???  Actually, these questions have been running through my head since January 5, 2012, the day we found out about the gastroschisis.  I can't believe that tomorrow we will finally start to get some answers.  It has been such a long road, and I know the hardest part is still to come, but I'm so ready to meet my daughter and do this thing!!!

Erik will be updating the blog and Facebook as soon as he can.  THANK YOU from the bottom of our hearts for your prayers and positive mojo!  We are so humbled and thankful to have you all cheering us on.  Stay tuned!

36 WEEKS!

All about baby…

• Average baby weighs about 6 lbs and is about 18.5 inches long
• Baby continues to add fat and put on weight
• Baby is starting to shed lanugo (a layer of downy hair that covers the body) and the vernix caseosa (a waxy substance all over the body that protects the baby’s skin from the amniotic fluid)
• At the end of this week, baby is no longer considered preterm!!

All about me…

Total time in hospital: 5 weeks, 3 days
Total Weight Gain: 37 lbs
Bellybutton: Still a hybrid innie/outtie
Stretchmarks: Just noticed my first few… and I was so close!
Baby position: Frank breech
Sleep: Still decent
Symptoms: BH contractions, fatigue, shortness of breath, pelvic pressure
Food Cravings: Ice cream, chocolate
High Point of the Week: Start of the NBA Finals!  If you know me, you know I’m a big basketball fan.  If you have to be in the hospital, playoffs season is a good time to be there.
Low Point of the Week: Can’t think of one… this was a pretty mellow week.
One Thing I Miss About Home: Nesting and baby prepping. I was enjoying putting the nursery together before I was admitted to the hospital.  But we’ll still have time to wrap things up while the LW is in the NICU.
What I’m Reading: The Glass Castle
What I’m Looking Forward to: Wednesday’s 3-week growth ultrasound
Next Milestone: 5 days until the LW is full term!!  Two weeks until delivery day!!!!

36 Weeks

In-room artwork, courtesy of Erik

Bowel Distension - Part 2

I talked to my perinatologist today about the bowel distension we noticed at yesterday’s ultrasound.  He was aware of the big segment I saw.  They first noticed it a couple weeks ago, and I remember one doctor saying something about it.  He said it will continue to get larger as the baby grows and the intestines grow.  Regardless, he still thinks that cooking the LW to 38 weeks is more important.  He reminded me again that the current medical wisdom is that extra-abdominal bowel distension is not an accurate indicator of future complications.  This is the case no matter how little or how much distension you see on the ultrasound (i.e., there’s not a cut-off amount).  Some babies with distension do end up having GI complications, but others don’t.  But we know for sure that lung maturity and gestational age are related to better outcomes.  So his opinion is that no amount of bowel distension is worth taking the baby before she’s full term, if we can get her there.  I’m glad that we’re still on the same course and that nothing has changed, but I’m also glad that I said something and can rest easier! 

I’ll have my next growth ultrasound on Wednesday.  Unlike bowel distension, this is something that could influence their decision on when to deliver me.  As you may remember from my last growth ultrasound, if she hasn’t grown at all within the past 3 weeks they could decide to deliver me now.  My belly has grown and she feels bigger to me, so I believe in my heart that she has grown, but who knows how the measurements will pan out.  So keep your fingers crossed that they work out in our favor! 

Finally, I had my AFI checked again today.  Long story short, my perinatologist wants to change my schedule a bit so that a nurse down here can do it rather than sending me upstairs to the ultrasound department each time.  Today they measured me at 7.2 compared to 5.8 yesterday.  Just goes to show how variable it can be depending on the technician and what they can see that day. 

AFI Update & Extra-Abdominal Bowel Distension

My AFI was 5.8 today compared to 6.8 on Monday.  The umbilical cord Doppler was still good.  The LW is still doing great on the monitor.  So everything is pretty much the same, but as expected, they are noticing more bowel distension as I get closer to term.  There is one segment in particular that looks really swollen.  Even I noticed it on the ultrasound and it was so big that I couldn’t even tell that it was intestine.  The doctors have seen this segment before, and they continue to say that when it comes to giving the LW the best head start she can get, gestational age is more important than extra-abdominal bowel distension.  See my previous post on this subject.  I also found a published study in the Journal of Pediatric Surgery that supports what the doctors are telling me.  The study identified four factors that were statistically relevant to length of stay in the NICU: 

1. Gestational age
2. If a silo is needed (compared to primary closure)
3. If GI complications occur (like atresia, perforation, or resection)
4. If other, non-GI anomalies are present

The study found that intestinal distension seen on prenatal ultrasounds is not an accurate predictor of length of stay in the NICU.  Some subjects with dilated bowel had GI complications, but others did not.  They concluded that distension produces many false positive predictions of adverse outcome, and does not reliably predict GI complications or the need for a silo.  However, the absence of bowel distension did reliably predict less complex cases and shorter NICU stays.  So basically, if you don’t see distension you know you’re in pretty good shape.  But if you do see it, it doesn’t necessarily mean anything.  You could still have a quick and easy run in the NICU with no complications, or you could end up having a more complicated case.

 

Despite what I’m being told and what I’m reading, I’m still having a weird gut reaction to this large segment of swollen bowel.  So I expressed my concerns to my ob/gyn when she came in today to check on me.  She has been my biggest advocate through all of this.  She comes to see me every day she’s in the office, she calls me on her days off if I have questions, and she reviews every one of the LW’s monitoring strips with a fine-toothed comb.  Like me, she is extra cautious about everything and always takes the most conservative approach.  But most importantly, she listens to all of my concerns and never brushes me off, and she always makes sure that I get answers.  If she can’t answer my questions she makes sure that the perinatologists do.  I told her that I know they generally don’t think that bowel distension is a reason to deliver me early, but now that I’m almost 36 weeks, is there a point where too much is too much?  Because this particular segment looked really big to me.  I told her that I wanted my primary perinatologist to look at the photos of the swollen bowel from today’s ultrasound and confirm that waiting to deliver me is still the best option.  So she is going to call him to review the photos together and he is going to stop by or call me tomorrow to discuss.  I’m proud of myself for listening to my instincts and voicing my concerns.  You can’t have that nagging feeling in the back of your mind when you’re in a situation like this.  I’m sure I will feel better after talking to him tomorrow. 

AFI and D-Day Update

Today’s ultrasound went well!  My AFI was 6.8, up from 4.6 last Thursday.  The umbilical cord Doppler was also good.  She’s still doing great on the monitor – no changes there. 

The technician also pointed out that the LW has some chubby cheeks, although they were hard for me to see because she always has her hands up by her face.   Even though this wasn't a full growth ultrasound, I know she’s growing because I’m getting bigger (and more uncomfortable).  And it's music to my ears to hear that she’s fattening up!  The bigger and stronger she can be, the better.    

Now for the exciting part… we have a likely birthday for the LW!!  My C-section has been scheduled for Monday, July 2.  That’s 21 days, folks!  21 DAYS.  Of course, it could be less than that if the LW decides to come early, and we all know that she likes to call the shots around here.  If she happens to turn into a head-down position, I would be induced that day rather than scheduled for a C-section.  But things are getting really cramped in there, and it’s harder for her to turn with low amniotic fluid, so I have a strong feeling that she’ll stay where she is.  

I’ll be 38 weeks and 2 days on July 2, 1 week and 5 days shy of my actual due date.  Almost all gastroschisis babies are born early, either on their own or by doctor’s orders.  Because the intestines get more and more irritated the longer they are exposed to the amniotic fluid, they like to get the babies out and on the road to recovery as soon as they reach full lung maturity, which is usually at 38 weeks.  (In case you’re wondering, I will not be getting an amnio to confirm lung maturity because they think it is too risky given the low fluid levels and the exposed bowel.)  So my doctors all agree that 38 weeks is an ideal time to deliver.  Let’s just hope that the LW concurs!