41 Days – Memorial Weekend in Canada

We would like to start this post with recognizing Memorial Day.  Thank you to all service members that put their lives on the line for our freedom every day.  My father was in the Air Force during the Vietnam War and my grandfather was in the Air Force during WWII.  While this holiday is not celebrated in Canada, Eric and I both wanted to recognize it.

We have quite a few updates on Aiden.

  1. Aiden has reached 1,418 grams!  You guys, he is almost double his birth weight!  He’s on 18 milliliters every 2 hours.  Remember when he couldn’t handle 1 milliliter? That seems like a long time ago.
  2. Aiden will have further routine tests tomorrow: Eyes – it’s common for preemies to have eye issues.  The blood vessels to their retina can grow incorrectly, which causes blindness at the most severe case.  We heard the actual test is like Clockwork Orange.  (I will not be there for this test.)  Brain – he has a routine brain scan.  Let’s hope all is still good here.  Blood – this happens weekly.  We will report back on the results.
  3. The doctors decided to reduce Aiden’s CPAP back to one level of pressure instead of two.  He’s off NIV and we’re happy for it.  This is a step forward.
  4. The doctors moved Aiden to another area of the room because of his sensitivity to noise.  A brand new BC Women’s and Children’s hospital is under construction now, and they plan to keep some of the current hospital buildings.  The construction causes noise – which can’t be helped – so they moved Aiden as far away as possible.
  5. Finally, Aiden likely has one or two hernias.  This happens in 50% of male preemies.  This is easily fixed through surgery.  They plan to do it a couple days before he’s discharged because they want him to be at his healthiest.  They will sedate him, only Tylenol is needed for the recovery and he will have small scars.  Just pile it on and we will handle it!

We had a nice weekend, Eric’s parents were in town.  I bought Eric and his dad an early Father’s Day gift of golf at Furry Creek.  Teri and I shopped downtown.  We ate at some amazing restaurants.  We are loving this city!

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36 Days – Mischievous Aiden

Aiden is developing quite the personality.  His english nurse called him “mischievous” today and thinks we’ll have our hands full when we bring him home.  He fights when they change his CPAP mask to prongs (oxygen tubes that fit tightly into his nose).  He pushes their hands away, moves his head back and forth and cries.   He also picks up his head and tries to smash his mask into his bed.  Preemies are suprisingly strong and agile, I have a hard time holding his hands down.  When Aiden’s upset, he will let you know.  (I’m hearing a recurring theme from nurses here – feisty, mischievous, strong, fighter…)

We have three primary nurses now: Nathalie, Erin and Patsy.  They all take extra care of our son.  They help with consistency in care (Aiden desats, he just does that and no need to panic) decorate his charts, and talk with us about anything – what to expect next, what restaurants to check out, how to find a bike and how annoyed they are that no Canadian hockey teams made the playoffs.  We just love them.

The doctors gave him another blood transfusion yesterday – that makes three!  They also decided to change his CPAP back to NIV, which provides more oxygen support.  They keep reminding us it’s common to go back and forth in the NICU.

He is gaining weight quickly, he’s already over 1,200 grams.  If you compare photos from when he was born you can see the changes.  His cheeks are getting chubbier (Eric’s happy about that), and he now has the next size up diaper.  Of course it doesn’t fit, but at least he’s grown out of the smallest size.  Progress!

A new preemie came in the other night while Eric was holding Aiden.  She was only 560 grams.  All the feelings we had during that time – fear of his survival, potential disabilities, what his future would be – came rushing back.  I had tears in my eyes for what these parents were going through.  When we came the next morning the baby was gone. Life is precious.

34 Days – Steady as he goes

Aiden is 30 weeks gestation.  We cannot believe 5 weeks have gone by since he was born!  We hit great milestones when I last wrote about Aiden.  Not much has changed since then.  The doctor told us to expect things to slow down a little bit (that’s a good thing!) because now he needs to grow.

He weighs 2.5 pounds and gaining quickly.  We love to see where he’s filling out – in his cheeks, neck, back.  Big babies are healthy babies, so I’m ready for him to get chunky.

We learned about three different ages for preemies: gestational age, chronological age and corrected age.  His gestational age is based upon how many weeks he would be in utero, which is 30 weeks.  His chronological age is based upon when he was born, which is 34 days.  And his corrected age is based upon his due date (he won’t have a corrected age until he passes his due date).

Expectations of development should be based upon his due date.  For instance, solid foods should be introduced at 6 months, but for Aiden they won’t be introduced until he is 9 months from his birth date or 6 months from his due date.  When he turns 2 years old we no longer need to consider his corrected age.

Eric and I googled famous premature babies and came up with quite the list (no pressure, Aiden):

  • Sir Isaac Newton
  • Sir Winston Churchill
  • Stevie Wonder
  • Albert Einstein
  • Charles Darwin
  • Mark Twain

Day 29 – Like a Champ

Aiden has been doing really well the past few days!

  1. They removed all IVs.  They are no longer feeding him synthetic food (TPN) which can harm his liver over time.
  2. He is finished with antibiotics, the staph infection is gone.
  3. He reached full feeds yesterday and is handling it like a champ.  He’s at 12 milliliters every 2 hours.
  4. They lowered his oxygen pressure.

While he still desats, it’s less frequent and he pulls himself out of it quickly.  We finally feel like we can relax.  More challenges will come up, but for now, we are going to enjoy this time.

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He loves cuddling a pillow.

 

Day 26 – 2 Pounds!

Aiden reached two pounds last night!  He weighed one and a half pounds at birth, and finally gained half a pound.  It’s important to remember he lost weight after birth, so he had more to make up for than just a half pound.  And he struggled with his feedings the past few weeks.  Each setback affects his weight.

Aiden continues to have desats and the doctors are trying different settings on the CPAP machine to see what works. He is going up to 9 mLs of feeding tonight and we are hoping he can accept it.  The goal is to get him to 12 mLs (which would be max feed) by 5/17.

I’m starting to realize the difference between frightening and just normal scary things that happen in the NICU.  Like when his heartbeat drops to 50 and nurses are scrambling to rub his back and remind him to breathe.  That, I don’t like.  But if he desats down for a short time and it comes back up, it’s something I can accept.

The long term concern about his oxygen drops (desats) are the effects on his brain and vital organs.  The doctors want the optimal breathing option.  I get it, I don’t want any long term effects on our son.  But it’s also not feasible to expect him to be a perfect breathing baby when he wasn’t supposed to use his lungs for three more months.  So I can’t stress every single time that damn alarm goes off.  I know it has to be a part of his process.

Being a NICU parent is exhausting.  But I think of how much Aiden’s little body is fighting to survive and it gives me strength to keep going.  I am literally counting down the days (76 to be exact) to when we can bring him home!

Day 24 – Aiden’s Smile

We caught Aiden smiling!  The nurse told us it was gas, but I like to think he was smiling at us.

He had a hard time handling higher feeds the past few days.  The doctors dropped him to 5 mL and tonight he will be back up to 8 mL.  He now weighs 880 grams, which is great! Let’s hope increasing milk every 12 hours isn’t too much for him.

His blood culture came back negative for staph.  I’m so glad they removed the PICC line (the source of the infection).  He will continue antibiotics until May 17th.  His desats continue, I’m getting used to the alarm.

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Our Superman

Eric will stay in LA for a few more days.  He put together the crib this week, I love how it turned out.  I can’t wait to get home and decorate the nursery.  The planner in me is really annoyed I didn’t get the chance to put the room together.  Our son has taught us early we cannot control everything.

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Nice building skills, babe.

 

 

Day 20 – Major Improvements

I am excited to share Aiden’s improvements over the past 24 hours.  I was with him when the doctors conducted their rounds this morning.  Mondays are usually big days because the full staff of doctors are present and they discuss pros/cons and determine the best action for each preemie.

  1. They adjusted his CPAP settings to give him pressure less frequently, over longer periods of time.  He still desats but pulls himself out of it quickly.  This is a great sign that he can handle his breathing.  He was on room air for quite a while today!  No more discussions about intubation, let’s keep it that way.
  2. He has another staph infection.  Which isn’t great news.  The doctors determined it’s caused by the PICC line.  He’s been on antibiotics, but the infection will not go away without removing the PICC line.  They decided to remove it.  Which also means…
  3. He is no longer on synthetic food!  He is on breast milk with added calories and nutrients.  It’s not good for him to be on synthetic food for too long.  I spoke with the nutritionist for a while today and she has taken on Aiden’s case so she can manage his intake.  It’s very important for him to start gaining weight now.
  4. He is increasing the amount of breast milk steadily – 8 mL today and 9 mL at midnight.  Let’s hope and pray he can handle these amounts and more, so that we can keep him on track.

We were so relieved to hear the progress.  You can see in the above photo that he’s comfortable.  We’re giving him a break from cuddling so he can rest. Come on, Aiden!

Eric went home today to check on the house, work and take care of our animals.  Clearly our cat is not happy with us.

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She destroyed the toilet paper.

 

Day 19 – Mother’s Day

Happy Mother’s Day to all the wonderful mothers out there.  I am incredibly thankful for my mother, two sisters and mother-in-law, all mothers who teach love, the importance of family and laughter during hard times.  I look forward to teaching the same values to our son.

Eric treated me to brunch at VanDusen Botanical Gardens this morning and we spent time cuddling with Aiden later this afternoon.  I still cannot believe we are celebrating this day!

Now onto Aiden’s health.  We’ve talked extensively with Respiratory Therapists about Aiden’s difficulty with breathing the past 4 – 5 days and the possibility to intubate.  We absolutely don’t want Aiden to take this step back, but he may need to do it if he cannot gain weight.  He is below the normal weight gain because he’s burning too many calories to breathe.  He did so well the past couple of weeks we expect that to continue, but the doctors think he may be getting tired.

Our nurse tonight noticed noise and light bother him and he needs to sleep on his stomach because it supports the muscles that haven’t yet developed.  His de-sats reduced significantly when she started.  She has worked with prems for 10 years, so we asked her tonight if she would be one of our primary nurses (meaning she’s assigned to Aiden when she works).  She agreed.  Eric cracked a joke about me asking her to go to the dance with me.  Yes, please don’t reject me because you are reducing his de-sats!

Aiden will be 28 weeks gestation tomorrow.

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Aiden’s footprint at 27 weeks.  His toes are so tiny!

 

Day 17 – The Routine

Eric and I have started to settle into a routine.  We wake up in the morning, get ready and Eric immediately begins working.  I pump, make both of us breakfast then walk down to visit Aiden.  I get all updates from the doctor’s rounds (how much to feed him, oxygen levels, number of de-sats over night, caffeine intake, any concerns, etc.) and text to Eric.  Aiden and I have skin to skin for 90 minutes (he always does so well during that time, little sweetie), pump, then we meet to eat lunch.  I either go back down with Aiden or nap, call my family/friends, call insurance company, work on paperwork for my leave or read.  Eric finishes work, we cook dinner and visit Aiden.  Eric has his skin to skin for 90 minutes (he does really well with Dad too) and we are back home around 11 PM.  We sleep, I pump throughout the night and we are back at it again the next day.  I have no idea how the time flies by but it does.

We want to share where we’ve been staying: The Ronald McDonald House BC.  We are beyond thankful this is an option for us during this time and will support this charity for the rest of our lives.  We pay an extremely reduced rate per night and are only half a block away from the BC Women’s Hospital where the NICU is located.

The building is only a couple years old.  It offers four chef kitchens, garden, fitness center, lounge rooms, multiple activities including massages donated by the local massage school (what??), dinners and breakfasts cooked and donated by local businesses, and other on-site classes to help families forget about the struggles they are experiencing.

Families staying here are in a similar situation to us or have children in the BC Children’s Hospital, which is connected to the BC Women’s Hospital.  A lot of kids have cancer or other debilitating diseases, it is astonishing how they (and their families – mom, dad, brothers, sisters) persevere.  We are all a lot stronger than we think.

Aiden is doing okay, last night we had a scare when blood came out of his vent after his feeding.  The vent is an empty syringe connected to his feeding tube to allow air and milk to escape.  His stomach gets full and he needs to vent it out in order to digest.  They quickly gave him an x-ray and nothing alarming came back.  They think the feeding tube may have irritated his stomach and caused it to bleed.  He struggled all night but felt better today.  When I cuddled with him this morning he fell into a deep, settled sleep.

Day 15 – A Better Day

We are happy to report Aiden’s second set of blood results came back and he is clear of infection.  He now weighs 800 grams and is eating well.  He’s on 6 milliliters every two hours and they’ve added a supplement to his food to help increase his weight.

Rachel told us the scariest time period for preemies is the first 10 days of their lives.  Some babies struggle through that time and others do really well.  Aiden’s doing really well (thank God).  Another doctor told us to compare Aiden’s progress to the stock market.  There will be dips, but as long as the stock is continually increasing, don’t panic and sell.

The insurance company told us they won’t cover medical transport to bring Aiden to LA.  We will be here until he’s completely healthy and ready to come home.  Looks like we’ll be exploring more of Vancouver!  If only I wasn’t chained to a breast pump every 3 hours…

It’s hard to be separated from our pets at home.  We have a 6 month old puppy (Kona) and a six-year-old cat (Chloe).  It’s impossible for us to be in two places at once, we are so grateful for family and friends that are helping care for them.

Lastly, I read a letter posted on a bulletin board from a fellow NICU mom and it spoke to me (I cried my eyes out): http://tinyurl.com/gkokqg3