Déjà vu

The blog has been a little quiet these last few days because, quite honestly, there wasn't too much to report on!  Elyse had a beautiful week -- tolerating her feed increases well and gaining weight.  She even had a couple big poops that were overdue (never thought I'd see the day when bowel movements were such cause for celebration), and her brady and apnea spells even seemed to be getting better.

Unfortunately, all that took a bit of a turn tonight.  She had a bad spell while Matt and I were visiting -- in my arms, in fact.  Her stats dipped (like they usually do), but instead of jumping back up with a little stimulation, they just kept going lower.  Then her colour started to change, and in a matter of seconds-that-felt-like-hours the nurse had taken her to start administrating oxygen and hit the alarm button that brings a whole team running in.  It was quite terrifying, and we were utterly helpless.  The only other time I have felt like that was when Emmett was born not breathing.  Children, please stop doing this to your mother!

Once they got her stable, the next question to answer was why this spell was so severe.  At this point a strong possibility is that she has developed another infection, so they decided to do another full sepsis workup -- blood and urine culture, lumbar puncture, and proactively starting antibiotics.  When you're dealing with a potential infection in such a small patient they don't like to waste any time waiting for results, and tend to start some broad-spectrum antibiotics right away just in case.  Her preliminary blood work indicated that infection was likely, but we won't have more specific information for another 24-48 hours.  Unfortunately, her PICC line had just been removed this afternoon, so they had to insert a new IV.  Apparently she has very teeny veins (go figure), so I really hope that's not something they will need to do very often.  They have also put her back on CPAP for the night, to make sure she remembers to keep breathing.

One of the most puzzling things is that this is all happening around the same timeframe as her first infection -- about to reach full feeds, TPN completed, just started milk fortifier.  I don't know how any of those could cause septicemia (or other infection), but it does make me wonder.  For some reason this seems to be the hurdle we just can't get over yet.

smiles for Mommy

33 weeks

Elyse is now 33 weeks corrected -- according to the pregnancy e-mails I'm still getting, babies at this stage in the womb should be putting on about half a pound a week.  So she's doing a pretty good job of keeping up with her peers, which is positive.  Today she weighed in at 1300g, or 2 pounds 14 ounces.  Now that she's a little older, her feedings have changed to every 3 hours instead of every 2.  And since she is tolerating her feedings well, they are increasing by 1mL every six hours.

At the hospital they like to tell parents to plan for their baby to come home roughly around the original due date.  Some may be a little earlier, and some a little later.  So going by that theory, she still has about 7 weeks to go.  Seems like so far away, but at the same time she still has a lot to accomplish in that time.  In order to be discharged, she needs to:

• be at least 35 weeks (corrected age)
• be heavy enough to meet car seat requirements (4lbs minimum)
• move from an incubator to open-air cot (i.e. regulate her own temperature)
• take full feeds by mouth
• be off caffeine and brady/apnea free for a minimum of 5 days

Speaking of her brady and apnea episodes, she was having more than usual yesterday, in conjunction with desaturation of her oxygen levels (also known as a desat).  It was fairly unusual for her, until I had her out for kangaroo care and noticed that she sounded a little congested.  The nurse ended up suctioning her nose to clear it out, and once that was done her levels bounced right back up and she was stable the rest of the afternoon.  They mentioned that it could be from reflux (especially since she had spit up a little bit that morning), or the start of a cold.  Fortunately when I was back today, she sounded much clearer and her stats were stable, so hopefully that means it was nothing serious.

No new photos from today, but a fellow preemie mom shared this recently, and I thought it was really beautiful, and a great inspiration:

Back on track

Not trying to jinx anything here, but after our couple of bumps in the road last week, it's nice to feel like things are finally back on track.  Elyse is now finished all of her antibiotics, and her weight has been steadily gaining about an ounce a day, up to 1240g (2lbs 12oz) today.  Her feeds were increased to 1ml every 2 hours yesterday, and increased again to 2ml every 2 hours today.  So far she seems to be tolerating them well, so hopefully the increases continue to go smoothly. 

She is still having a number of brady spells, including some that need a bit of intervention (the nurse rubbing her back or arm), which is a bit of a change as previously they were all typically self-resolving.  Again, both types are still quite normal for her young age.  The doctors think she may have outgrown her caffeine dose and have increased it again, so we will see if that helps.

In other positive news, the results of her head ultrasound came back showing nothing of concern, and cardiology has signed off on her, meaning they do not believe she has any heart issues and don't see the need to run any additional tests.  So hopefully all we need to think about now is sleep, eat, and grow!

snug as a bug

her isolette and assorted equipment

3 weeks old

I am happy to say that Elyse had a pretty uneventful weekend, although she did get to meet her uncle David and soon-to-be aunt Megan on Saturday, which was exciting.  The doctors were happy with her blood work this morning and have decided to resume her feedings (hooray!).  They are going to take things very slowly -- starting out at 1mL every 4 hours.  But as long as she tolerates it well, the quantity should increase every 24 hours.  She is already three weeks old today, and is weighing in at 1190g, or 2lbs 10oz. 

wearing her first sleeper

Emmett ended up going to my parent's on Friday night for an impromptu sleepover, which gave Matt and I the chance to have a nice long visit with Elyse on Friday night and an even longer one on Saturday, complete with extra-long cuddles.  It also gave us the chance to sleep in, which was very much appreciated.  Between the late nights and early mornings, my 3-hour pumping schedule, and Emmett's less-than-stellar sleep patterns right now, it's safe to say that we are definitely going to be good and primed to have a newborn in the house again!

cuddles with Mommy

Big brother

Elyse is definitely ending the week on a better note than it started.  All of her x-rays and the ultrasound came back clear, her abdominal swelling is gone, and her stats are all stable.  She is still having multiple brady episodes each day, but that is still fairly normal at this stage.  She completed one of her antibiotics today, and will be finishing the other in a few days.  The doctors have even mentioned starting up her feeds again over the weekend, but we will see what the plan is tomorrow.  Insert cautiously optimistic sigh of relief.

We had a very exciting day yesterday.  The CHEO audio/visual department offered to take some family photos for us, and invited us to bring Emmett too.  He was pretty excited to meet his sister for the first time, and handled it all like a champ.  I think it was the 'Mike the Knight' book that she gave him that really won him over.  The photos turned out really well, and such a wonderful keepsake of a special day.  Here's a sneak peak...

 

It was also Matt's first time holding her, and the first time we dressed her in clothing.  Even a preemie-sized sleeper was miles too big, but I'm sure she will be filling them out in no time.  She was up to 1067g (about 2lbs 5.5oz) today -- a steady gain all week, even without milk.  I'm confident once she's back on her feeds those numbers will go up even quicker.  Feeling very thankful for a positive end to the week!  Now let's just hope the weekend follows suit.

32 weeks

Elyse is doing well today.  She had a good night without too many decels, and the x-rays show no changes, and no NEC so far (which is a very good thing).  The doctors say her bloodwork is reassuring but they are still being cautious.  She still isn't as active as usual, but her colour looks better and her abdominal bloating has decreased.  The plan is to keep her off feeds for a few more days and do an abdominal ultrasound to check the blood flow in her bowel and intestines.  She is not out of the woods just yet, but at least heading in the right direction.

I swear, if I don't have grey hairs yet I surely will by the end of all this!  At least my mom was kind enough to point out the wonderful array of hair colouring options available these days (thanks Mom).

Even without her milk feeds she was still up to 1027g today, a little over 2lbs 4oz.  Slow but steady!  And she is 32 weeks (adjusted age) today.  Going forward, she will actually have two different ages -- the adjusted or corrected age is how old she should be if she was born full-term, versus her actual or chronological age which is based on her actual birthdate.  For the first two years or so, her development will be measured against her adjusted age, which is approximately 10 weeks behind her actual age.

 

An interesting preemie tidbit -- if you notice the top of her ear slightly folded, that's because the ear cartilage doesn't actually harden until a few weeks before birth -- it's one of the last things to develop.  I thought that was pretty interesting (after I got over the fact that her ear was folded in half one day).

The kilo club

I had a great visit with a fellow preemie mom yesterday, who has started a support group for parents of premature babies here in Ottawa.  It has been such a blessing to make connections with other parents who have been down (or currently going down) the same road.  I was also able to help her deliver a load of care packages to other families in the NICU at CHEO -- great work Nicole!   

In Elyse news, she hit a big milestone yesterday -- weighing in at 1000g!  Way to go little girl.  She also had a visit from her Nana and Papa Burd. 

Nana and Papa Burd having a visit

 

She was being very cute for her evening care, bright eyed and trying to chew on her IV tube.  I think she's figuring out when it's time to eat.

 

nom nom nom

 

Unfortunately we have had another set back today.  She didn't tolerate her milk very well this morning and her stomach was quite bloated.  While this can just be a preemie thing, it can also be an early sign of Necrotizing Enterocolitis (NEC), a very serious infection and inflammation of the intestine.  Her initial x-ray looked ok (no sign of NEC), and they will be repeating it every 12 hours to monitor any changes.  In the meantime, they have discontinued her milk feedings and implemented nasogastric drainage (removal of air and fluids from her stomach) to give her system a chance to rest and heal.  Hoping and praying that is enough to help her recover, and that it doesn't develop into something more serious.

 

A good weekend

I am very happy to report that Elyse had a good weekend.  Her cultures did come back positive for a blood infection, but she is responding well to the antibiotics and will stay on them at least a week to make sure everything is cleared up.  She was able to come back off the CPAP on Saturday morning and they have resumed her milk feedings again.  You can tell she is feeling better -- her colour is good, and she's much more alert and active.  Thank you to everyone who continues to keep her in your thoughts and prayers -- she certainly seems to have a few angels watching over her.

smiles with her bunny

We had a mixture of daytime and evening visits over the weekend -- every day is a little different, depending on what works best for us and for Emmett.  Elyse had some family visitors, and met her Aunt Heather and Uncle Dan, and her Nana and Papa Glasius for the first time.

a visit with Nana

 

meeting her Aunt Heather

And finally, Elyse is two weeks old today!  She is weighing in at 985g (2lbs 3oz) and is 37cm long.  She is starting to keep her eyes open for longer stretches, especially during our kangaroo care.

13 days old

Rollercoaster

We were warned this journey would be a rollercoaster ride, and I'm starting to get a much better appreciation for that analogy.  One day you're on top of the world -- the sky is clear, and you can see for miles.  The next, you're hurtling blindly down a hill, heart in your throat, not knowing what the next turn might bring.

Yesterday was one of the good days -- blissfully boring, as I like to call it.  Elyse was calm and quiet, tolerated her newly-fortified milk well and barely had any brady spells.  We were even able to have a wonderful 2-hour cuddle (our longest kangaroo care yet).  For someone who is constantly multitasking, it has been a big adjustment for me to just sit and be still for any length of time.  But I have started to really cherish our peaceful afternoons together -- no phone, no television, no distractions.   Just holding my little girl and admiring ten tiny little fingers and a perfect button nose... my little escape from the busyness of the outside world.

11 days old

 

Still riding the high of our great day yesterday, I was caught off guard by another call from the hospital this morning.  Elyse wasn't being herself -- extra sleepy, not as active, and started having apnea spells on top of the bradys.  They thought she might be developing an infection.

We had been warned that infections are often par for the course for preemies, but that doesn't make it any easier when it happens to your baby.  The doctors took samples of blood, urine and spinal fluid to culture, and started her on antibiotics as a precaution.  They also put her back on the CPAP machine, to give her lungs a rest and help conserve her energy.  By the time I arrived, she was stable and resting comfortably.  The nurses said she looked better already, so that was a little more reassuring.  It will be at least 24-48 hours before we get any results from the cultures, but please keep the prayers and positive thoughts coming her way.  And we will wait out the set back until this ride decides to take it's next upward turn... hopefully sooner than later.

a few personal touches for her isolette

The waiting game

I'm starting to realize that there is a whole lot of waiting that goes on around the NICU.  And most of the answers we got today are going to involve a whole lot more.  But the good news is that the doctors haven't found anything of concern at this point -- and if that's the case, I've got all the time in the world.

I spoke to the cardiologist today to go over the findings from Elyse's heart analysis.  She said that there doesn't appear to be anything overly concerning about the abnormal heart rhythms, and that they might be triggered by reflux.  They are going to keep her at CHEO for the time being for observation, and repeat the Holter monitor in a week or so.  In the meantime, they have slowed down the speed of her milk feedings to help with reflux, as well as increase her daily dose of caffeine.  Yes, you read right -- NICU babies often get their morning Timmies just like the rest of us, to treat apnea and bradycardia.  Only they actually do have it flowing through an IV, the way we all wish for it on Monday mornings.  Who knew?!

Her feeds have now increased to 9mL every 2 hours, and the intravenous TPN solution should be finished as of tomorrow.  Since she is still so little, they will be adding fortifier to her milk to supplement the minerals and iron she would have received during the last trimester in utero.  If she tolerates the fortifier, and makes it up to full feedings (10mL) without issue, then her PICC line should be removed in the next few days -- keeping our fingers crossed!

And finally, Elyse weighed in at a whopping 2lbs (910g) today!  Keep growing baby girl!

"Sometimes the littlest things

take up the most room in your heart"

- Winnie the Pooh

The first road bump

Yesterday I got my first phone call from the hospital.  It's not a number I want to see on the caller ID -- talk about launching my heart into my throat.  It was Elyse's neonatologist, who fortunately reassured me right away that she was stable, and not to be alarmed.  They must do this a lot.

We knew from talking to her nurses earlier that she had a few episodes of abnormal heart rhythms on Sunday.  Preemies often have heart decelerations called bradycardia or "brady" spells, which they usually outgrow by the time they are full-term.  But hers were a little different than a typical brady episode.  At first they thought that perhaps her central IV line had been inserted too deep, so they pulled it back out a tiny bit.  Unfortunately, she had a few more episodes afterwards, so it hadn't solved the problem. 

The neonatologist was calling to let me know they wanted to transfer Elyse to the Children's Hospital of Eastern Ontario (CHEO) to be assessed by the cardiology team.  Fortunately the two hospitals are located side by side, so they were able to just walk her isolette over.  Maybe I need more sleep, but I kept picturing her being rolled down the hall in slow motion, surrounded by her entourage like something out of a movie, or the pope.  It made me giggle.

settling into her new digs at CHEO

Once she arrived at CHEO, they hooked her up to a Holter monitor to get a more detailed reading of her heart activity over the next 24 hours.  Unfortunately all the extra electrodes and wires meant no cuddles last night, but we were able to visit and help with her care routine.  The NICU at CHEO has a really nice setup whereby each patient has their own private area, so it's nice and quiet for visiting.

getting her blankets changed

 

The good news is that really nothing else has changed.  She is still stable and comfortable and at this point there is no reason to panic.  The monitoring will finish later today but we won't hear anything until the cardiologist has a chance to review all the data and analyze the arrhythmias, so probably another day or so.  From the sounds of it, she will most likely spend a couple days at CHEO, and then depending on the findings may stay longer or be transferred back to the General.

outfitted in a Holter monitor to record heart activity

 

Week one

It's hard to believe that it has been a week since Elyse was born.  I think it has been both the longest and shortest week of my life, especially as we try to adjust to our "new normal" for the next little while.  One thing is for sure, it has been quite the rollercoaster of emotions -- from the initial feelings of shock and anxiety finding out she was coming early, to the joy and relief of her safe arrival, and then feeling completely overwhelmed the first time I set foot in the NICU.

It was hard seeing her in the isolette for the first time, she just looked so tiny and helpless.  She should have still been warm and safe in my belly for two more months, not surrounded by wires and machines.  But it was comforting to know that she was in the best possible place, surrounded by a team of doctors and nurses who's sole concern is to get her home safe and healthy.

The NICU is a pretty amazing place.  Elyse has a nurse dedicated to her around the clock, constantly monitoring her heart rate, breathing and oxygen levels.  Every four hours she goes through her care routine -- temperature and blood pressure taken, eyes and mouth cleaned, diaper changed, and oxygen probe switched from one foot to the other.  They have shown us how to do it too, so that we can be involved and interact with her.  When the babies are this small, they try to cluster all of the activities together so that in between she can just rest and not get too overstimulated.  She is also able to come out once a day for "kangaroo care", where we get to cuddle with her skin-to-skin.  Definitely the highlight of my day.

holding Elyse for the first time (2 days old)

 

Elyse had a great week with lots of positive progress.  She came off her CPAP machine after 48-hours, and has been breathing room air on her own ever since (awesome).  I believe a lot of that has to do with her receiving the steroid injections, and am so thankful we were able to complete the full dose prior to her birth.  She lost some weight the first few days, which was to be expected, but was back up to her birth weight on Friday.  Fortunately I have had no issues pumping, and was able to provide her with colostrum and breast milk from the start.  She receives the milk every 2 hours through her feeding tube, and also receives a constant intravenous infusion of TPN (total parenteral nutrition - a solution of protein, fat and carbohydrate, as well as nutrients such as calcium, phosphorus and iron.  It is supposed to mimic the nutrients she would have been receiving in utero).

 

Daddy changing his first diaper

 

Her first round of blood work on Monday showed an increased bilirubin level (jaundice), so she spent 2 days under light therapy to bring it down, and it has been stable ever since.  We were also able to bring in our own blankets to use as bedding in her isolette, so she looks so much cosier.  I even managed to find ones with ponies on them -- you can never start too early ;-)

 

catching some rays in her isolette

 

I was discharged from the hospital on Thursday, which was bittersweet.  It was so nice to get home to Emmett, and sleep in my own bed again.  But at the same time, it was hard leaving Elyse behind.  Now our new challenge is trying to balance life at home with life at the hospital.  We have been blessed with an outpouring of support -- from messages and stories of hope, to meals and offers to look after Emmett, to all the prayers and positive thoughts -- please know how much we appreciate it all.

 

So that pretty much brings you up to speed so far.  The plan going forward is to continue to increase her feeds and decrease the TPN solution, and slowly transition to bottle/breast feeding in a few weeks.  Hopefully things stay stable and strong, but we have been told to expect to take "two steps forward and one step back", so we are just taking each day as it comes.

 



6 days old

(30w3d corrected)

 

The road to here

I should have known this little girl was going to be a drama queen.

When I found out my Level II ultrasound was scheduled the week before Christmas, Matt and I had the idea to have the gender written down, have a friend wrap up either a "Little Brother" or "Little Sister" sleeper, and open it on Christmas Day with Emmett and our family.  So arrangements were made, sleepers were bought, we go through the entire ultrasound and... nothing.  Not a peak, not a hint... just firmly crossed legs.  Not to be deterred, I managed to book a last-minute appointment at a 3D ultrasound clinic the next week, driving all the way across the city on my first day of holidays for it... oh, and did I mention it was 2 days before Christmas and total chaos?  Like I said... should have been a hint.

Having gone through a relatively uneventful pregnancy two years ago with Emmett, I was expecting much of the same the second time around.  My diabetes was well controlled, I had started all my prenatal supplements a few months in advance, and I was being followed by the same fabulous high-risk team as before.  The first 20 weeks were smooth sailing -- and life with a 2-year-old sure made it seem to fly by a lot quicker. 

During our follow up from the Level II ultrasound, the doctor mentioned that I had a two-vessel cord.  Most umbilical cords have one vein and two arteries, however some (approximately 1 in 100) only have a single artery.  Nobody really knows why, and most of the time it doesn't really mean much.  We were told that sometimes it can impact baby's growth in the third trimester, but they would just keep a little closer eye on it. 

We returned a few weeks later for the next routine ultrasound.  Baby was measuring a little small, but still within normal range.  They spent a lot of time looking at the blood flow through the cord, but everything looked just fine.  Fast forward two weeks later and things had started to change.  Baby's growth had slowed enough to be diagnosed with IUGR (intrauterine growth restriction), and they had started to notice abnormal blood flow patterns through the umbilical cord.  The doctor booked us for a follow up 3 days later and mentioned that if it didn't look any better he would look at transferring my care to the Ottawa General.  When I realized it was because they are a Level III neonatal care facility and can take premature babies under 32 weeks, things got a little more scary.  At this point I was only 29 weeks pregnant.

Friday came and the follow up was not great.  The ultrasound now showed absent end diastolic blood flow, meaning instead of continually flowing forward like it should, it was starting to pause between pulses.  A clear sign that my placenta was simply not doing it's job anymore.  The doctor contacted the General, and they asked that we come in for their own assessment.  I received a shot of Celestone (a steroid to help baby's lungs mature faster), and off we went.

We arrived at the General, and checked in at triage.  Turns out it was one of the craziest afternoons they had in a long time, go figure.  At least it gave us some time to make arrangements to have Emmett picked up from daycare, and cancel our hotel for the weekend.  Had I mentioned that Matt and I were scheduled to leave the next day for a nice relaxing weekend away in New York?  Like I said, she has a flair for the dramatic.

The doctors reviewed my chart and ultrasounds, and came to the same conclusion.  Baby was not getting enough of what she needed anymore, and weighing the risks on both sides, was going to be better off coming out than staying in.  The plan was to keep her in another 48 hours in order to get the maximum benefits from the course of steroid injections, as well as start 24 hours of magnesium sulfate for neuroprotection.  In the meantime, I would be admitted on bed rest and constant fetal monitoring.  If at anytime she showed undue stress, they would be prepared to act quickly.

Not expecting the situation to have escalated so quickly, we were quite obviously unprepared for a hospital stay, let alone having a baby.  So Matt went home to gather some things together, and I got settled into my room.  Despite it being my worst case scenario, it really wasn't.  The doctors and nurses were amazing, and knowing that everyone just had the baby's best interest at heart made it ok.  

Aside from a few heart rate decelerations overnight that would bring a whole whack of people into the room to assess, the weekend was calm and relaxed.  I was able to complete the full 48-hours of steroids and MgSO4, and my C-section proceeded as planned on Sunday afternoon after only 29 weeks and 4 days of pregnancy.  Elyse Catherine Brearey made her grand appearance on March 2nd at exactly 4:00pm.  She weighed 860 grams (1lb 14oz) and 36cm long.  She was born "en caul" (still enclosed in the amniotic sac) which the nurses all thought was really special, and is supposed to bring good luck.

The team from the NICU (neonatal intensive care unit) took her right away to assess and stabilize, and Matt was able to see her.  She needed a bit of help to start breathing, but all her vital signs were stable and strong.  She was put on a CPAP machine (room air, no extra oxygen) to help keep her lungs slightly inflated so she wouldn't have to work quite so hard for each breath.  Once she was stable, she was transferred to the NICU nursery and I was taken to my recovery room.  We were able to visit later that night, and so began our next big adventure...

Welcome to the world sweet baby girl