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.

3 - 2 - 1...

Elyse is 37 weeks old (corrected age) today, meaning she is now full-term.  But even more exciting is that the countdown is on!  If all continues to go well over the next three days, we will be bringing our little girl home on Saturday.  Wow.  It is still quite surreal (and a little scary) to be seeing the light at the end of the tunnel, but I am so excited to have her home at last and start enjoying life as a family of four. 

starting to look like a regular sized newborn 

Elyse's bottling continues to go well.  Her feeding tube was removed on Monday night, and she is eagerly taking every feed by bottle without any issues.  She still needs the occasional reminder to pause and catch her breath, but that should improve as she gets stronger and her hemoglobin levels continue to increase.  She is now drinking 40mL of fortified milk every 3 hours, and is weighing in at 1955g, or 4lbs 5oz.

nom nom nom

We have been trying to spend as much time with her as possible this week, to get as comfortable and familiar with her routine as we can.  The hospital offers a space called the "Joshua Room", where parents getting ready to bring home their NICU babies can spend 24-48 hours living at the hospital and doing all the feedings and care before they are discharged.  I think that is such a great way to ease into the transition home, and Matt and I are planning on staying there Friday night to try and get a good feel for her full 24-hour routine.

bath night

 

Over the next few days Elyse will have a few final follow up exams and blood work, and they will also start to transition her over to the milk fortifier that we will be using at home.  Hopefully she will tolerate that one as well as the old one, but I don't anticipate any issues.  On the home front, we are in full-fledged baby preparation mode (again), but I am feeling ready.  It has been a lot of fun getting all the baby stuff out of storage and ready for another round of use.  And I for one love washing baby clothes -- how could you not when they are just so cute?  (although ask me again in a month or two and I may have a different answer).



Easter weekend

Happy Easter everyone!

It was a great weekend around the Brearey house, but still with it's share of ups and downs.  Elyse had a pretty impressive first night at the Civic on Friday.  She was transitioned into an open cot, and also had her feeding tube removed.  While it was exciting to see her without the tube, we were actually a little surprised by this, as she had not been reliably bottling for 24-hours yet.

all cozy in her big girl bed

It seemed like there may have been a lack of communication about her feeding strategy when she was transferred, since the plan from the General had been to alternate bottle and gavage feeds unless she was awake and alert, in which case the bottle would be offered first.  It felt like the bottling was being pushed very quickly, and as a result she was having quite a few heart decelerations and oxygen desats during the feedings, and an apnea spell during her bottle on Saturday morning -- her first big spell in three weeks.  It was quite frustrating to see her struggle with the bottles, and felt like we were taking a big step back.  We talked to the nurse later that evening, and decided to put the feeding tube back in so that she could have a rest from bottling if she needed it.  After all, she had just been through a number of big changes and even just the transfer alone can take a lot out of them.

an Easter visit from big brother Emmett

She seemed to have a better night, alternating feeds by bottle and NG tube.  Unfortunately, my morning visit didn't go so well.  Once again her bottle feed was disorganized and felt like a struggle, with several decels and monitor alarms.  And to make matters worse, she ended up vomiting most of it back up all over me (note to self -- remember to burp her a little longer next time).  Not a great way to start the day.  We also found out that her hemoglobin was on the low side, which may account for some of the decels and shortness of breath.  But fortunately her reticulocyte count was high, meaning she is making her own red blood cells.  That, combined with her iron supplement, should help improve her energy levels without needing another blood transfusion.

wrapped up in her new blanket

I sometimes struggle to find the right balance between advocating for our child, and trusting the professionals who do this every day.  We returned in the afternoon and talked to the nurse about our concerns (again), and she patiently talked to us about the strategy behind encouraging more bottling (again).  She really believed that Elyse was strong enough to do it, and just needed more experience and practice.  This time, however, she also showed us how to utilize a strategy called "pacing" during her bottle feeds.  It involves helping her regulate her drinking by using her cues to control the flow of milk -- reclining her slightly with steady milk flow when she is actively sucking, and sitting her up with limited (or no) flow when she stops, giving her a chance to catch her breath.

she gets to wear sleepers now - yay!

The pacing worked beautifully, and finishing that feed after being shown how to do it properly gave me a lot of confidence.  I was also able to return for an evening feed, and it was seamless.  The nurse turned all the monitors off except for her oxygen saturation, which was a great compromise.  It gave me the reassurance that she was stable throughout the feed, without obsessing over what her heart rate was doing.  I was able to just concentrate on Elyse and her cues, and before I knew it the whole bottle was gone and we were both happy.

all swaddled in Mommy's arms

Now that she is starting to bottle feed more reliably, they have started talking about her discharge date.  Unfortunately, since she had that spell on Saturday, she needs to stay at least 5-7 days spell-free.  But perhaps that is a blessing in disguise, giving us a few extra days to prepare for her to rock our world again -- only this time it will be for the best possible reason :)

On the road again

Elyse got to take her first big road trip today.  The General was nearing capacity and needed to make room for more critically-ill babies, so she was transferred to the Civic campus, which is a level II special care nursery (SCN).  It's nice to know that she's doing well enough to "graduate" to a lower level, but at the same time it is always a challenge to adjust to the change and a new environment.  Fortunately, they are both campuses of the same hospital group, so the policies and day-to-day routines are very similar.

checking out the new digs

The transfer went well, and Elyse seemed to settle into her new spot quite comfortably.  When we went to see her tonight we ran into nurse Judy, who I know through riding and who also helped take care of Emmett during his short stay in the SCN after birth.  It was a welcome sight to see a familiar face on our first night. 

We did Elyse's care and she took her bottle like a champ, finishing the whole thing in 15 minutes and looking for more.  Apparently she did all of her feeds by bottle during the day shift yesterday, but then was so tired she barely took any bottles overnight.  So, even though it's coming together, it can take a lot out of her too.  But compared to where she was a week, or even just a few days ago, she is making incredible progress.  I'm a very proud mama!

all tuckered out from her big day

Elyse has passed another big milestone -- she now weighs 4 pounds, and has more than doubled her birth weight!  She must have had a big growth spurt this week, since her weight went up 122g in two days.  She has also grown 7cm since she was born.  I recently read somewhere to expect them to grow about a centimetre a week, so she's right on track.  According to the "MyPreemie" app (yes, there's an app for that!), that puts her right around the 3rd percentile for weight and height.  She may be small, but she sure is mighty!  And besides, this way she won't outgrow her ponies too fast :)

wearing her Easter outfit

Off the grid

Tonight we got to take Elyse into the family room for her evening feed, and it was both exciting and terrifying all at once.  For one whole hour she was completely detached from all of her monitors.  It was just the three of us -- no wires, no screens, no alarms.  I didn't realize how much I had come to depend on those monitors for reassurance.  It is going to be tough to recondition myself to rely on (and trust) her signals instead.  It is definitely starting to feel like they are prepping us to take her home soon.  This journey used to feel like it was going to last forever and now, in the blink of an eye, six whole weeks have passed.  The panic is definitely starting to set in a little, and I now have a constant "to do" list running through my head, but I know it's going to be great.  The start of our next big adventure.

look ma, no monitors!

Elyse is still making great progress, and weighed in at 1691g (3lbs 12oz) tonight.  She is completely off her caffeine now, and still has not had any major brady spells.  She is getting the hang of the bottle, and has taken several full feeds from it.  Tonight she was pretty sleepy (it was also bath night, which probably tired her out too), but she still took about 20ml over a 20 minute period.  Right now they are alternating bottle feeds with gavage feedings (through her NG tube), so that she doesn't spend all her energy eating.  She is making good progress with the breastfeeding too, but since I can't be there at every feeding it is probably going to be a lot easier to focus on once she's home and closer to full term.

Emmett went in again this weekend to see his sister.  It's hard to read what his feelings on the whole situation are, but he talks about "baby Eese" a lot so hopefully that's a good sign.  We'll see how he feels when she's home to stay.

do I really have to share my toys with her?

Half-caf

It finally feels like spring has arrived, which is a perfect way to end such a good week.  Elyse had another big step forward today: because she hasn't had any major brady or apnea spells since the beginning of April (only minor decelerations, which all babies may have from time to time), the doctors have cut her caffeine dose in half.  If she does well over the weekend, then she may be taken off of it completely next week.  I am feeling pretty optimistic -- she just seems so much stronger and more stable than even a week or two ago.

pretty in pink

 

In other big news, she took 12ml of one of her feedings by bottle last night.  She doesn't try it at every feeding yet -- since it's so much work for preemies to bottle or breastfeed at this stage, they don't want to challenge her too much.  But it's great that she is starting to figure it out.  She also had her hearing and eye exams done this week and passed both with flying colours.  Preemies are susceptible to an eye disorder called Retinopathy of Prematurity or ROP, which causes abnormal growth of blood vessels in the eye and potential detachment of the retina.  Fortunately, Elyse is not showing any signs of it, but will have a follow-up exam in two weeks to be certain.  Here's an interesting fact -- Stevie Wonder was a preemie himself (born two months early) and lost his eyesight due to ROP.

 

happy girl in Daddy's arms

 
Finally, Elyse weighed in at 1570g tonight (or 3lbs 7oz).  She has been maintaining her temperature well, and they even decreased her "waterbed" temperature a little bit today.  Onwards and upwards!

 

Making progress

Elyse is 35 weeks corrected age today, meaning she has now met the first criteria for coming home!  She is well on her way for meeting several others too.  Last night she was moved into a "Kanmed" bed -- basically a bassinet with a heated waterbed-type mattress and an open top, which acts as a nice intermediate step between the isolette and a cot.  She has done quite well in it so far, keeping her temperature in a good range.  This also means she gets to start wearing onesies on a regular basis now.  She will start wearing full sleepers once she moves into a traditional cot, but for now they want a little more skin to be in contact with the heated mattress.

showing off her new bed and new wardrobe

 

The nurses have started offering her a bottle at the beginning of her feeds, if she is alert and interested in it.  So far she has drank a few millilitres each time, and then gets the rest through her NG tube as usual.  She is also continuing to try and breastfeed for 5-10 minutes a day, while she receives a tube feed so she starts to associate the action with a full belly.  The nurses describe her as being a bit "unorganized" with the oral feeds so far, but it's a lot to put together when you've only just got the whole suck-swallow-breathe thing sorted out!  I'm sure she'll get it figured out in no time.

 

bath time with Mommy

 

Matt and I had a nice visit tonight, and got to give her a bath for the first time.  I was a little hesitant, but she was a very patient girl -- and it certainly helped to have a nurse there to coach us through it all again.  Afterwards she was so calm and alert, and got all bundled up for a nice hour-long snuggle with her Daddy.

 

E.T. phone home?

 

Elyse is weighing in at 1535g or 3lbs 6oz today.  Her feeds have increased to 31ml of fortified milk every 3 hours, and she has also started her vitamin D and iron supplements once a day.  She also finished her last dose of Fluconazole this afternoon.  The last week really seemed to be a turning point for her.  I'm still being cautiously optimistic, but hoping the trend continues.  Just for fun, Matt and I are trying to predict when she might come home -- I'm saying May 1st, he says the 7th.  Any guesses?

Weekend update

I am happy to report that Elyse has been doing great these last few days -- her stats have been nice and stable, with only a couple brady episodes all weekend (all of which were self-resolving).  The results of her second blood culture came back negative for yeast, but just in case there are still any lingering cells the doctors are going to keep her on the Fluconazole for a little while longer.  The good news is that they have switched from an intravenous formula to an oral one, meaning she no longer needs an IV line -- hooray!  She is weighing in at 1450g (or 3lbs 3oz), and her feeds are up to 29ml of fortified milk every 3 hours.

Matt and I ended up heading down for a quick trip to Toronto over the weekend -- Matt went to the Blue Jays game and I was able to have a couple great visits with some girlfriends.  It was only one night away, but I think it was just what we needed.  I am definitely feeling refreshed, and ready to take on whatever the next few weeks might bring -- although really hoping it's going to be smooth sailing from here.

getting ready for Easter

One month old

Elyse was one month old on Wednesday!  I realized last week that I hadn't ordered her any monthly onesie stickers like I had for Emmett -- it was on my 'to do' list, only about two months from now.  I could just imagine the fights that would result from her brother having monthly sticker photos and her not (she is destined to be dramatic, remember?), but fortunately I was able to find some in time.  Crisis averted!

one month old

Elyse's transfer back to the General went well.  We did, however, have some unexpected hiccups later that day.  First of all, despite her 48-hour blood cultures being negative on Tuesday night, the lab discovered some yeast growing the next morning.  The doctors were quite surprised by this since clinically she was not acting like a baby with a fungal infection.  They suspect it could have been from the PICC line, and since it was removed on Sunday the yeast might be clearing up on it's own.  She was started on a daily dose of Fluconazole (an anti-fungal drug) until we see if the yeast is still present on her repeat blood culture in a few days.

The second hiccup was that the latest round of blood work showed that her hemoglobin level was quite low, and she had become anemic.  Again, she was not showing any clinical signs, other than being a little pale -- she is one tough cookie!  But because the level had dropped so much since her last test, and it could be related to the yeast infection, they decided to give her a blood transfusion.  She received 20ml of packed red blood cells, and it went well.  Her colour had already improved already when we saw her the next morning.  She will also start receiving an iron supplement in the next few days to try and prevent any future anemia.

I was definitely feeling pretty down yesterday -- even though all of her issues so far have thankfully ended up not being too serious, it's so hard to constantly be hearing that something else is going wrong.  Some days it just feels like she can't catch a break.  I have to try and keep reminding myself that a lot of these issues are quite typical for preemies, and to think of all the positives -- how far she's come already, and how well she is doing in the grand scheme of things. 

snuggles with Daddy

Like most bad days, things always seem better in the morning.  Today Matt and I had a good visit and were able to catch the doctors on rounds and get caught up.  Despite the few recent setbacks, there are lots of positives too.  She is finally tolerating the fortified feeds well, and has already moved up to the higher calorie dose.  Her feed volume also just increased to 27ml every 3 hours and she has barely had any brady spells or decelerations since her transfer.  It is also getting easier to hold her now that her IV line isn't hooked up all the time -- Matt even got some snuggle time in this morning.

I went back for an evening visit tonight, and she was bright eyed and alert which was so nice to see.  She was even able to try breastfeeding for the first time, which felt like a huge step forward.  And her last (but certainly not least) big accomplishment is that she is now 3 whole pounds!

taking it all in

April fools

Either it was an early April Fool's joke, or she just wanted to keep us all on our toes, but Elyse's cultures all came back negative, meaning it doesn't look like she has an infection after all.  This is great news, although we still don't know what caused her big spell on Sunday evening, which is a little unnerving.  It may have been from the removal of her PICC line, or the milk fortifier, or just a total fluke.  It was a little upsetting knowing that she had to go through all those invasive procedures for nothing, but absolutely better to err on the side of caution.

The doctors decided to discontinue her antibiotics as of tonight, and re-introduce the milk fortifier once again.  It does make me a little nervous, since something "major" has always happened the previous two times she has started fortification, but the extra calories, vitamins, and minerals are important for her proper growth and development.  Here's hoping the third time is the charm!

In other news, we also found out that Elyse is most likely going to be transferred back to the Ottawa General Hospital tonight (the one where she was born).  The NICU at CHEO is currently at capacity, and their spaces are better suited for critically-ill and higher risk babies.  It is quite reassuring to know that they feel Elyse is stable and well enough to leave the unit, although we are really going to miss CHEO -- the staff and facilities are second to none.  But it means we are one step closer to going home!

Woohoo, I'm outta here!