Mother's day

This Mother's Day was a little tougher than others, and rightfully so.  I think it's a difficult day for any mother to be apart from her child for whatever the reason -- a bittersweet reminder of how much they are loved, and how much they are missed.  But I still had a wonderful day, complete with early morning snuggles from Emmett, and afternoon snuggles from Elyse.  We had also stopped in for a quick visit with Emmett on our way to brunch, and he was happy to see her again.

Mother's day visit with my two little loves

 

peek-a-boo

 

Elyse even left me a little card with a new footprint, courtesy of yesterdays night shift nurses.  Amazing how much it has changed since the first set we got back in March!

 



 10 weeks old

 

Everyone is pleased with her progress over these past few days.  They are now increasing her feeds by 1mL every 3 hours (instead of every 6), which means she should now reach full feeds by the middle of this week.  There will still be a few more things to do once she hits that milestone: she will need to restart her iron and vitamin D supplements, the PICC line will need to be removed and she will need to transition back into an open cot.  She is also due for more blood work as well as her first round of vaccines (the one thing that goes by actual age instead of corrected).  So I'm not holding my breath yet, but thinking we may be about a week away (if all goes well).  Only time will tell!

So far so good

Yesterday was a very good day for Elyse.  Not only did she get to start eating again, but she has now officially surpassed the 5 pound mark!  They started her out on 6ml of milk every 3 hours, and will be increasing the volume by 1ml every other feed, so long as she continues to tolerate it well.  At that rate it will take about 10 days to reach full feeds, but that's ok.  Every extra millilitre is another step closer to home, no matter how long it takes -- even though she is starting to get a reputation for being the "old gal" in the nursery.

 

content after a little snack

 

what do you mean that's it for three more hours?!

Fingers crossed

It has been a quiet week so far.  The doctors ended up extending Elyse's antibiotics and bowel rest to 10 days, which is finally finished as of tonight.  The plan is for one more X-ray tomorrow morning and then resuming her feeds.  She will start with a small amount of fresh breast milk, and increase the volume slowly -- in fact, it sounds like it might take upwards of 7 to 10 days before she will reach full feeds again.  But I can understand why they want to take it slow and make sure she is tolerating both the milk and the volume.  Since she will still be supplemented with TPN, her PICC line will unfortunately need stay in for a little while longer -- but at least we will finally be moving forward again.  Fingers crossed this is the last bump in the road!

 

Did someone say food?  That's what I thought!

Wait, wait... and wait some more

Elyse had her follow up X-ray this morning, and the results came back inconclusive.  The overall picture is looking better, but there are a few areas of the bowel that the doctors can't agree on looking better or worse.  It sounds like they are all going to sit down tomorrow to discuss her case and plan the next course of action.  The good news (which the doctors keep reminding us of) is that she looks great and is not acting like a sick baby at all, so that is positive.  I just hate feeling like we are stuck in limbo -- let's make a decision one way or the other and move on.

all tucked in for the night

 

We had lots of nice visits over the weekend, including one from Emmett.  He was happy to see her out of the isolette but just kept wanting to pet her face.  We settled on stroking her blanket instead, and that seemed to be a good compromise.  I'm really looking forward to watching him interact with her at home -- he's going to be a great big brother.

 

so sweet

Patience

Elyse is two months old today!  And weighing in at 2130g, or 4lbs 11oz.  There was nowhere to stick her sticker today, so I had to improvise.

two months old

 

It has been a long week, but a good lesson in patience.  Elyse is stable and clinically doing very well, but the doctors are being cautious and taking things slowly.  Since she is going to be needing an IV for at least another week or so, they decided to re-insert her PICC line on Wednesday rather than having to keep poking around for new IV sites.  They had to take an x-ray to confirm the position of the catheter, and were able to get a glimpse of her bowels at the same time.  There was still some inflammation but it was starting to look better.

loves her hands above her head

 

The plan is to finish the full seven days of antibiotic treatment and bowel rest, and then re-X-ray on Sunday.  If the inflammation has resolved then we can talk about starting her back on a small amount of milk and then slowly increasing to ensure she tolerates it.  Realistically, it's looking like she will probably be staying at least another 7-10 days, which would bring us very close to her actual due date.  As eager as we are to get her home, I know she is where she needs to be right now.  It's just tough when there's nothing we can do but give it time.  We are trying to get as much extra cuddle time in as we can to give her (and the nurses) a break, but our visits range from out cold asleep, to calm and alert, to angry and unsettled.  I'm pretty sure she's had about enough of this too -- and I don't blame her one bit.

Hmmm... what kind of drama will I be able to stir up at home?

More questions than answers

Figuring out these little babies often feels like a jigsaw puzzle -- trying to fit all the pieces together until you can see the big picture.  Elyse has certainly been a puzzle these last couple of days. 

Her cultures and blood work all came back clear over the weekend, and so she was started back on her regular feeding schedule and moved back into an open cot.  Back to normal.  On Monday, however, the nurses still didn't think she was acting like her usual self and her bowel movements looked a little strange, so a follow up x-ray was ordered.  It showed that her bowels were not any better, and had even gotten a bit worse.  Fortunately they did not observe any pneumatosis (gas deposits in the intestinal wall) which a tell-tale sign of NEC, but they did observe some thickening of the bowel wall.  This could be a sign of NEC, but it could be a number of other things such as a bacteria or virus.

For those that may not recall an earlier post about it, NEC stands for necrotizing enterocolitis, and it is a very serious gastrointestinal condition in which the intestines of premature babies become infected, and in severe cases may perforate or rupture.  If caught early enough, antibiotic therapy is usually successful, but advanced cases may require surgery to remove necrotic tissue.

So her blood cultures have been repeated, just in case of a false negative the first time around.  They also sent off a stool sample for analysis and ran another complete blood count (CBC) test.  At this point the doctors are being very cautious and going to assume it is NEC until proven otherwise.  This means suspended feedings, back on intravenous TPN, and antibiotic therapy.  NEC is a dangerous disease in that they don't know what causes it, and it can progress very quickly.  That's why it's better to err on the side of caution and treat her for it, even if it doesn't end up being the diagnosis -- delaying treatment can mean a big difference in the outcome.

The puzzling part is that aside from the radiology findings, she is not showing any other clinical signs of NEC (swollen or distended belly, lack of bowel sounds, vomiting, etc).  Her blood work has also been normal, including her white blood cell count and level of C-reactive protein (CRP), which is an indicator of inflammation or infection.  Her stats have been stable for days, and she is acting like a grumpy baby who just wants to eat (and who can blame her).  As strange as it sounds, I almost wish one of these cultures would come back positive, only because then we would know exactly what we are dealing with and be able to move forward with a plan.  For now, it feels like we are stuck in limbo and treating a mystery we are still trying to solve.

On a positive note, Elyse turned 8 weeks old on Sunday, and has surpassed the 2 kilogram mark!  For fun, here's a side-by-side look at how much she has changed over the last 8 weeks...

Seven steps back

This is not the post I was hoping to write today.  Instead of settling in at home, we are settling back in for another week in the hospital due to Elyse having a spell yesterday.  She had choked a little during one of her early morning feeds and her oxygen dipped, but the doctor thought it might have been an isolated incident and was willing to continue with the discharge this weekend if everything continued to go perfectly.  It didn't.  Her feedings were hit or miss all day, and later in the evening (during her eye exam) she had an even bigger spell/desat which required stimulation and a bit of supplemental oxygen.

After the spell, the doctor ordered some blood work as well as an abdominal x-ray.  The blood work did not show anything of concern, and her hemoglobin has even started to increase which is great news.  The x-ray however showed some non-specific patterns, which could not rule out the start of an infection or inflammation of the gut.  It may end up being nothing at all, but as a precaution they decided to rest her gut overnight (i.e. suspend oral feeds and supplement with intravenous nutrition instead) as well as start precautionary antibiotics until the blood cultures have had time to grow (approximately 48 hours).  Here we go again.

 portable x-ray machine

 

It was tough to see her this morning, hooked up to the IV again and back in an isolette for better observation.  It just felt like one giant step back.  The good news is that her follow up X-ray looked good, and there doesn't seem to be any sign of NEC.  Now we are wondering if she might have been reacting to the new fortifier, since it was just introduced recently.  The plan will be to start her back on breast milk only (without any fortification), as it will be gentler on her system.  I spoke to the lactation consultant and we are going to try some "lactoengineering" to isolate the most calorie-rich milk for her.  This will involve pumping the foremilk separately from the hind milk, and only feeding the latter.  I am hoping that if she continues to gain weight on the milk alone, that perhaps she won't need fortifier at all?  Only time will tell, but I am happy that she is getting back on track.

 

not the way we had hoped to spend today

 

I am so frustrated, and tired, and done with this whole thing.  Being so close to the end has made these last two days some of the most draining ones yet, and so very emotionally taxing.  Looking on the bright side (there is always a bright side), I am thankful that she had these episodes at the hospital, and not at home.  Also, our house has not been this clean in a long time.  And in the grand scheme of things, a few more days is certainly worth bringing home a healthy baby and being confident in her ability to stay that way.