Another day... and an NG tube

At her morning weigh-in on Monday, 10/6, we had found out that Ellie lost 50 grams in the previous 24 hours.  In the hospital, she'd lost 30 grams the first day (Thursday to Friday), but regained 75 grams over the course of the next two days.  This means that at Monday morning’s weigh-in, she was below her weight at admission.  Dang it!  We were really hoping to go home after a 3rd day of weight gain.  When the team of doctors came around, they let us know that at this point, it would be best if they inserted an NG (nasogastric) tube... a.k.a. feeding tube.  The doctor said, "how do you feel about this, Mom?"  How do I feel?  Well, a bit deflated, to be honest.  But I don't see how my feelings or my preferences should ever come ahead of what is right for Ellie.  So I simply said, "I feel like if an NG tube is what is best here, then an NG tube is what we'll do".  

Shortly thereafter, a group of nursing students came back in with our nurse and a doctor came in to insert the tube.  The first try was unsuccessful.  The tube they were using (which was a small pediatric tube) was too big to fit through Ellie's nasal passage.  When it was pulled out, her little nose was bleeding a bit.  They called the PICU and got a tiny tube to use.  There are ones that are a little smaller (like the one she had for a day in the NICU, but they only last 30 days).  We aren't sure how long she'll have this tube in place, but we'd hate to put in a temporary one only to replace it and make her go through this all over again.  Ellie hated the insertion of the tube (as I can imagine everyone does), but calmed down shortly after it was in and secured.  Then we took her down to X-ray to make sure that it was placed exactly where it needed to be.  Then began the education on feedings and care for the tube.  There are 20 cm of tube inside (reaching from her left nostril to her stomach) and 75 cm of tube external.  This means there are about 30 inches of this tube outside of her body that we'll use to push feedings and medicines through.  My first thought: "this will look like a lasso to the boys, for sure".  So we worked out a way to secure the tube directly to Ellie's abdomen, under her clothes, so that it's out of the way and not likely to get snagged on anything.  I don't think the boys will mess with the tube that's on her face, but the extra cord surely looked like something that'd be irresistible to a preschooler and a toddler.

I sent this to Brandon saying "Daddy, check out my new bling"

Tracy sent me a picture of Lance "helping" her out at work – adorable!  Then said, “Lance wants to see a picture of Mommy and Ellie”.  So I sent him a goofy picture of myself and one of Ellie with her new “bling”.  He said, “what’s on her face?”.  Tracy explained that it was something Ellie needed to help her eat and that he was not allowed to touch it.  He said, “Okay, can I watch a movie now?”  Let’s hope he’s always this indifferent with it.

Ellie’s meds (Lasix and Aldactone) were also increased on Monday to keep up with her upcoming weight gain.  She, indeed, gained weight the next 2 days in the hospital and we were released last Wednesday (10/8).  Ellie was 5 weeks old and I was exactly 1 week away from going back to work.  EEEK!  I had a lot to do in a week to get back into a schedule that’d be conducive to working again.

Thursday brought an appointment for me (my 6-week follow-up after delivery), our first appointment with home health (they’re coming out twice a week to weigh Ellie), a quick meeting with the medical supply delivery guy, and dentist appointments for the boys.  We wrapped up the night with a family gathering at my mom & dad’s house.  Friday brought on foot surgery for me (no biggie), and I was able to snap a few fall pictures of the boys on my way to the doctor’s office.  We also went to visit Brandon at the job site to enjoy our last Friday picnic with him before I headed back to work.  Friday night, my aunt was in town (she lives in the Atlanta area), so we went to visit her at my grandparents’ house so they could all see Ellie. 

Our sweet Mookie (Lance).

And little KeyKob (Kaleb)

It took like 15 shots to get them to look like they liked each other!

While the NG Tube seemed daunting at first, it’s not been a bad adjustment at all.  Ellie is now more alert and she’s started to wake up and let me know when she’s hungry before some feedings.  She still sleeps a lot, yes, but it’s wonderful that she has more energy now and she’s starting to regain those puffy cheeks I love so much.  Is the feeding schedule different?  Absolutely!  Ellie is no longer nursing (which makes me sad, but it was too exhausting for her).  Instead, I’m expressing milk for her to eat.  We fortify the breast milk with formula to beef up the calories and we add additional formula (mixed for amped up calories) to get up to the volume that she needs to take in.  We let her drink from a bottle until she’s tired (we can’t let her eat for more than 30 minutes because she works too hard to do that), but she usually tuckers out after 10 or 15 minutes.  Then we take whatever she hasn’t eaten (usually less than 20 mL of the bottle) and gavage [hold up a syringe full of milk and let gravity trickle it through her tube] it through the NG Tube.  She takes 2 ounces at each feeding and is kept on a strict schedule to eat every 3 hours.  Once she’s done eating, I try to pump, then clean up all the equipment.  The process takes about an hour, but I’m finding ways to streamline it here and there.  I need to do this because hour-long feedings, 8 times a day makes this a full-time job.  Worth it, yes… ABSOLUTELY… but a little exhausting at times.

On Monday, we were due back to cardiology to see how Ellie’s weight gain was going.  On their scales, she weighed 3.255 kg (she weighed 3.085 kg at discharge last Wednesday).  Dr. Luby was thrilled.  Ellie was gaining an average of 34 grams a day (about an ounce).  Her new weight puts her over the seven pound mark at about 7 pounds, 2.8 ounces.  Yahoo!!  I told Dr. Luby that Ellie had done great through the weekend and the night with her feedings.  She didn’t want to eat at all at 9am, but this is where the tube is a blessing, I could get those 2 ounces in her even if she didn’t want to eat.  We scheduled a follow-up appointment for the 27^th and talked about how she was doing great now and that we’d look at maybe adjusting her medications at her next appointment.

As soon as we were home from that appointment, Ellie needed fed.  Right away, she started sweating during this feeding.  She continued this trend through the day and night on Monday.  This time, it wasn’t that she had beads of sweat across her brow, though.  This time, she’d start sweating within the first 3 or 4 minutes as she bottle-fed and she’d sweat enough to soak her hair.  Really?  This wasn’t what I wanted to see.  She was breathing heavier (which Dr. Luby noticed, too) and was having trouble breathing during feedings.  She’d take a gulp or two of milk, then pant heavily 10 to 15 times before taking another drink.  She would tire out very quickly – only getting 10 to 20 mL of the 60 mL bottle.  The rest would go through the tube.  This was a totally different pattern than what she’d had just 24 hours earlier, so on Tuesday morning, we called our cardiologist back.  This little monster sure keeps us on our toes.

Dr. Luby had us increase Ellie’s meds from 2 doses a day to 3 doses per day and gave specific times to push those.  Did I mention that we’re able to push her medicine through the NG tube as well?  That’s kind of nice because then we know for sure that she gets the full amount.  Dr. Luby asked to see Ellie again today and said, “Wednesday is your first day back to work, right, Jackie?”  Yes… indeed it is.  She was able to accommodate us for a late afternoon appointment so that I don’t have to adjust my work schedule on my first day back.  Awesome! 

Dr. Luby called this morning, though (it’s Wednesday), to check up on how the night went and I let her know that Ellie was still sweating through feedings… not as much as she had on Monday and Tuesday, but still sweating and only eating 10-20 mL of her bottle.  She also had diarrhea.  Dr. Luby adjusted medication – kept the Lasix on the same schedule we’d started Tuesday, but took away a dose of Aldactone in the middle of the day (Aldactone is really there to help Ellie hold on to potassium and not pee it out).  She also said that we need to change up the feeding routine so that we’re only offering Ellie her bottle twice a day.  For the other 6 feedings, we’ll just gavage everything through the NG tube.  This way, Ellie still gets the “treat” and therapy from sucking, but she doesn’t have to put in all that work each and every time she eats.  I’m beginning to think that we have the laziest baby in the world… ha!  But for now… this is the plan!  We check back in the Dr. Luby on Friday and go back for a visit on Monday to see how it’s going. 

Oh, and I posted a schedule of medicine & feedings (along w/ directions on how to gavage & how to mix her milk and formula) on our fridge and keep another one in the diaper bag.  I also set alarms on my phone to go off when it’s time for medicine.  I need to do something to keep it straight in my brain, right?

Did I mention that a volunteer came by while we were in Children's with a furry friend to visit Ellie??


Bloopers from the photo shoot with the boys (this is how 90% of the pictures looked):

I don't even have an explanation for this... 

He's not trying to be smoldering here... just grumpy

I have no idea what the deal is with the arms