I'll be Home for Christmas

It is through teary eyes that we share our big news.  Wyatt is coming home!  Not only has his little life been saved but he is thriving.  He will go home with oxygen support for his immature and still developing lungs and we will have yet another transition as we go home but our magical day has finally arrived.  

He passed his car seat test today, having to remain in it for 90 minutes without any de-sats (oxygen level drops) or bradys (heart rate drops).  We've been schooled on preparing his high calorie bottles and giving liquid iron supplements.  We've watched the infant car seat and infant CPR videos.  The diaper bag is packed, the preemie diapers purchased, the bottles are washed, and the bassinet ready to hold our little miracle.  Our home is ready - complete with hand sanitizing "stations" throughout.  And our hearts have always been ready, I believe.

Here he is passing his car seat test with flying colors!

Our Boy is Growing Up!

Daddy has now given bottles, Wyatt has passed his hearing test, and is up to 5 pounds, 2 ounces.  He's like the size of a term baby now!  (Albeit a small one.)  He pulled his feeding tube out a few days ago which is when they decided to move to full feeds by bottle.  He's very ready for that - eating so well!

What I've Learned

While in the NICU so far, I've learned the noise the Giraffe bed makes when it needs more water.  This is a special isolette that Wyatt isn't in anymore but occasionally I'll hear that familiar sound down the hall.  I've learned a lot of acronyms - TPN, PICC, HFNC, CVA, CC, mL, CPAP, NG, IUGR, GI, PDA, NICU, RT and ROP, to name a few.  I've learned that medicine is (in my opinion) a very noble profession.  I'm continually amazed by their skill, care, and commitment to their patients.  I've learned that there is a bit of a "recipe" for caring for a 27 weeker like mine and although I feared for his life in those first days, they were right when they told me, "Don't worry.  This is what we do."  I've learned that thousands of other moms near and far share similar stories and almost everyone knows a preemie.  They love to share their stories with us about how well they're doing and how they know what this road we're going down is like.  And for that we're thankful!  

I've learned that Matthew is an even more incredible husband than I ever thought always ready to dry my tears, make me laugh, be our strength, and love me through every minute of every day.  And he is an equally amazing father.  I love watching him rock, talk to, feed, and love Wyatt...even at 3 am!

And I've learned that I am much stronger than I ever thought I was and even in the hardest of times, I can still see find the sparkle.  That doesn't mean I'm not realistic because there are harsh realities to this situation we're in but you have to find the silver lining.  It's always there.

We are Grateful

I know it's cliche to note everything we're thankful for on Thanksgiving but I love cliches and I'm grateful for a lot of things. I could never list them all and I won't even claim to have chosen the most important ones.  My heart is so full, here are a few I'd like to share. 

I'm thankful for high calorie formula that helps Wyatt grow - and an in house nutritionist who determines just the right amount he needs.  I'm thankful that he takes these full feeds by bottle and continues to pack on weight and grow.  I'm thankful that we have a private room at Evergreen where we can spend 24 hours a day (if we want) with our boy, interacting with the staff, and learning how to parent a preemie.  I'm thankful for 7:00-7:30.  That's shift change time and I love hearing and seeing the nurses sharing information about "their" babies so they can provide the best care possible.  And that's exactly what they do.  I'm thankful for highly educated, highly skilled neonatologists who provide excellent care and communication each and every day.  They have saved our baby's life.  I'm thankful for oxygen support that helps my little guy breathe every second of every day and makes living outside the womb (all too soon!) just a little bit easier.  I am thankful that statistics mean nothing when we serve a God who protects and heals his children.  We are thankful for you, Wyatt.

We are thankful for friends, family, and strangers who have wrapped their arms around us, who have been on their knees praying for us, who have opened their wallets for us, who have opened their homes to us, and who have opened their hearts for us.  We never could have made it this far without you.  We had no idea how many people loved us.

We are grateful that you are touched by the blog and our story.  May you find as many things as we to be thankful for this Thanksgiving.

Wonderful News

Wyatt had his last eye exam yesterday.  The ophthamologist delivered the good news that Wyatt does NOT have ROP (retinopathy of prematurity which many preemies develop and it often requires surgery).  Although he hated the exam (they prop his eyes open with little springs!), we're thrilled with the outcome.  The ad-lib-eating chunker also gained 3 ounces yesterday.  He's taking full feeds by bottle now (no more feeding tube!) and is up to a small newborn size now - 4 pounds, 12 ounces.

We are so thankful.

A New Day Part 2

Today is a new day.  Wyatt is back up in weight - 4 pounds, 9 ounces.  He hasn't had a de-sat since we've been here (he's NEVER had a day without de-sats!) And he just finished an almost 2 ounce bottle without any trouble (and probably would have taken more if we had given him more)!  He has slept so well (probably from being highly satisfied from these big bottles) and we are so happy.  My heart is full!

A New Day

Some days are hard.  It's hard to watch your child struggle to breathe.  It's hard when you've seen Halloween, almost seen Thanksgiving, and then you walk into the lobby and the Christmas lights and wreaths are hung.  Will we ever go home?  I don't like bottle feeding when Wyatt gets so tired from sucking that he stops breathing.  It's not fun when they weigh him and he's dropped weight - weight he can't afford to lose.  I hate when I can't sleep because the monitors are dinging and at 3 am the "staff assist" button has to be pushed so all available nurses on the floor can come help intervene in Wyatt's breathing.  And then, the day ends, and there's a new one just around the corner.  We are thankful that every day we have the gift of a new day.

Sleepover!

First Family "Selfie"

I've "moved in" to the NICU and am spending nights here now, too.  (I'll go home each week at least a night to do laundry and pack more clothes which I'm doing tonight.)  Last night we had our first whole family sleepover - Matthew stayed the night, too.  Although I don't sleep much between the monitors, the cares every few hours and now bottle feeds, it's the best reason to lose sleep.  When you have to wait 50 days to feed your own baby, there's something magical about waking up at 3 am to give a bottle!

Our growing boy is up to 4 pounds, 2 ounces, has had his 2 month immunizations (equally painful for mom as for Wyatt!) and is still bottle feeding about every other feed.  He is down to 1 liter of room air, getting closer all the time to no oxygen support at all!

4 Pounds!

2 months old yesterday and 4 pounds today.  We are thrilled!  He's "nippling" (taking a bottle) about every other feed at this point and doing it like only Wyatt does, like a champ.  While I was feeding him today the nurse was amazed at how well he was doing.  And I asked, "Because he's a preemie?  A 27 weeker?  Because of his respiratory rate?"  She simply replied, "Yes!"  All of the above.  Way to go, grower feeder!

He's taking 36 mLs now, over an ounce at each feeding.  He continues to LOVE his pacifier (which is a huge factor in his success with feeding) and often cries if he loses it (which I can swiftly take care of since he's in an open crib!)

Grow, Wyatt, grow!  We love you, buddy!

World Prematurity Day

Today is World Prematurity Day.  1 in 9 babies are born prematurely and many of them don't survive.  We're thrilled that our Wy Guy is still with us and are forever thankful to the amazing nurses and doctors at Evergreen.  We love you, Wyatt!

What a difference 2 months makes.

2 Months and Out of the Isolette!

These are the days that make life in the NICU just a little bit sweeter.  Although it's bittersweet that our boy turned 2 months old while in the NICU, we couldn't be happier that he's 2 months old.  A lot of things have happened in this month of life!

Having Wyatt move to an open crib today was so special.  When most interactions with your child are through holes in a plastic box, you can imagine our elation with this switch.  He stays pretty bundled up so he isn't burning too many calories trying to stay warm (we like to reserve calorie burning for bottle feeding!).  The most incredible part of this is being able to pick him up anytime we want.  He was wide awake for a period today so I just scooped him up into my arms.  It was the best.

FAQ

Here are some of the questions we, our friends, and family get asked the most about our NICU journey.  

Why did he come so early?
As most of you know, I had a very typical pregnancy...until 27 weeks.  I wasn't sick a single day and felt great.  I did experience pregnancy-induced hypertension and was put on some low-dose blood pressure meds at 23 weeks.  4 weeks into the meds, I had a growth scan to be sure my meds weren't impacting baby's growth (as they sometimes can).  This did not seem to be the issue but the scan itself was a lifesaver.  This ultrasound at just days before 27 weeks showed that Wyatt was suffering from IUGR (intrauterine growth restriction - poor growth of a baby while in the mother's womb during pregnancy.  It means the developing baby weighs less than 90% of other babies at the same gestational age) due to placenta issues.  My placenta wasn't doing its job (that's how it was explained to me) and inside me, Wyatt was being robbed of the nutrients he needed.  So, after a second growth scan at a specialist which showed all the same things, I was admitted to the hospital that afternoon (Monday, September 15th) and delivered by c-section the next morning (Tuesday, September 16th - my birthday).  

Could it happen again?
If we have a second child, there is up to a 50% chance that I will have placenta issues again, yes.  They would monitor me more closely and there are some things they can do along the way, if the same issue occurred (high protein diet, bed rest, etc.)

What are "care times"?
At 9, 12, 3, and 6, around the clock, Wyatt has care times.  All of his cares occur at these times to maximize his rest and sleep time so he can do what he needs to do the most - GROW!  At care times, the nurse listens to his heart, lungs, and bowels, changes his "sat probe" from one foot to the other (pulse oximeter - that indicates how well he's using his oxygen), checks his blood pressure (only at 9 and 9), takes his temperature, and I change his diaper (and sometimes his outfit).  After all this, he takes a feeding and, hopefully, goes back to sleep!

Why can he just now wear clothes?
Nothing fit him before!  Just kidding.  Although that's not the real reason, it is true!  They like to keep him unclothed (he's in a heated bed) for assessment purposes.  If any of his vitals drop, they can get a quick look at his color to make sure what the monitors are saying match what is actually happening to or in his little body.

Will he come out of his isolette before he goes home?
Yes.  When babies reach 1800 grams (he's almost there!) they are typically ready to regulate and maintain their own body temperature without burning too many calories doing it.  So, soon enough he'll be in an open crib until he goes home!

Can Wyatt hear?  See?
Yes!  At 18 weeks babies can hear and by 20, they recognize their mother's voice.  I love this one!  At this time, we understand that Wyatt can see but maybe not in color and that what he sees is in blob form and not specific form (such as a circle for someone's head while not being able to see each facial feature).

What is his adjusted age?  And what does that mean?
Tomorrow Wyatt turns 2 months old.  That is, naturally, his actual age.  His adjusted age right now is 35 weeks.  Preemies typically hit major milestones based on their adjusted age (not actual) so while most babies begin walking at around 12 months, he's likely to walk around 12 months according to his adjusted age so not next fall but next winter.  It can also take preemies a while to "catch up" to peers their age in height and weight so don't be surprised if our little peanut is just that - a little peanut for a while.

How is Evergreen Hospital?
We're now 60 days into our journey here and they have made this tough road easier.  I truly can't say enough great things about this NICU team, from the front desk that greets us each day, to the doctors who check on us and Wyatt while providing exemplary, life-saving care, to the nurses.  The nurses will be the hardest to leave when we do get to go home.  Many of you have shared your awe at what I do each day - wrangling 25+ students, teaching, and loving it, as you know.  You think that's amazing?  Spend a day in the NICU and you'll find heroes.  Not only do they approach Wyatt with care, gentleness, and great knowledge but they take care of all of us like that.  They talk Huskies with Matt and crafts with me.  They greet us with a smile each day.  They have Wyatt's Sunday night stats ready for me on Monday morning (because they know I'll ask) and the board is updated with his weight each day (that's the first thing we look for) and they take pictures in the night, they make new pound marker signs for the door as he climbs in weight, they love on our boy, all while managing more than one NICU baby and charting.  They cheer us up on tough days and celebrate with us on good days.  We love you, Evergreen!

Does he have the same nurse all the time?
Wyatt has two FABULOUS day nurses and night nurses that mostly cover the beginning and the end of the week between them.  Occassionally, he'll have someone else during the day or the night but for the most part, he has the same day and same night nurses from week to week.

What is a typical day like?
There isn't really a typical (which is NOT my favorite part!) but most of my time spent (about 11 hours each day at this point) there includes helping with cares, talking to doctors, nurses, and respiratory therapists, updating family and friends on Wyatt, blogging, writing thank you notes, holding (for 3 hours each day), bottle feeding (about an hour each day at 12 and 6), some school projects, and a little downtime.  I'm there about 9 or 10 in the morning and Matthew comes after work about 6:30.  We usually stay until 7:30 or 8, find some dinner, and head out.  He'll be taking bottles in the night soon so I'll probably begin staying at the hospital overnight.  Hopefully we're reaching the home stretch and this won't be for long!

What does he have to weigh before he can come home?
There isn't a weight requirement for coming home.  His coming home has much more to do with the As and Bs of the NICU.  He needs to not have any As (apnea episodes) where he stops breathing (that's the de-sats issue we experience a lot) and no Bs (bradycardia episodes) where his heart rate drops.  He's growing all the time and his weight certainly helps everything else function, but he doesn't have to be a certain weight to come home, nor does he get to go home as soon as he reaches a certain weight.  We'd be thrilled to have our Wyatt home for Christmas but we still don't know when he'll be discharged and are taking it a day at a time.  

Will there be a coming home party?
Unfortunately, no.  We imagine that our transition home will be just as hectic as our transition into NICU life.  Wyatt's system will still be fragile, susceptible to germs, and we'll need to be very cautious with visitors and all the bugs of winter!

What can I do to help?

• Meals (to eat now or to freeze)
• Snacks for long days at the hospital
• Gift cards for food or gas
• Donations to our Go Fund Me to help cover the expenses we're incurring
• Pray for Wyatt, strength, health

How are Lisa & Matt doing?

We're hanging in there.  If you've been following the blog, you know there are good days and hard days.  We celebrate every little thing and try to see the positive in anything and everything because, after all, our miracle is alive!  That said, 60 days is a long time to abandon "normal life" and spend your days in a hospital where your baby is in a plastic box much of the day.  Just like parenting, NICU life doesn't have weekends off so it is exhausting at times, more emotionally than anything.  But, I'll circle back to the heart of this - we have Wyatt.  I know I'm not the only one who wondered if a 27 week baby would even see his 1 week birthday.  Our faith, family, friends, and YOU have carried us through this.  

"You never know how strong you are until being 

strong is the only choice you have."

Nighttime Pics

We leave a camera here and invite the nurses to take pictures of Wyatt when we're not around.  Here are a few of our favorites.  Thanks for snapping these when we're not around, awesome Evergreen nurses!

Slow and Steady Wins the Race

It's not a sprint, it's a marathon.  If I've heard it once, I've heard it a thousand times.  And I know this.  But it doesn't make the days go by any faster.  

Wyatt's goals are:

• Continue growing
• Learn how to orally eat
• Wean off O2

These are no small goals but we're all working together to help Wyatt achieve these so he can come HOME!  That will be a glorious day.  

Since today is Thursday, that means care rounds day.  I love when I get to sit with the whole "team" and talk about Wyatt.  And I always come with my questions.  More than being able to get information and have questions answered though is to see this room of people dedicated to our boy.  It is quite a humbling position to be in.  I hope they know how incredibly loved and appreciated they are.

Here are all the updates at this time!

• His feedings have increased to 34 CCs from 32 (that's OVER an ounce!).  He's receiving all feedings through a feeding tube at this time.  He's on 2 liters of room air and with that flow, he can't take bottles so hopefully we'll get back to that soon.  Those are the highlight of my day!
• He's in a 28 degree (celsius) bed with his own body temperature staying stable.  Before long, he'll be in an open crib!
• He is no longer on caffeine to spur on his breathing.  The neonatologist explained that the caffeine treats the brain, which I found fascinating.  It makes sure the brain tells the lungs to breathe.  At 35 weeks (which he is), the brain is doing its job so the caffeine won't help anymore, indicating his lungs are the issue (not the communication between the brain and the lungs).  This is no surprise to us!
• He had another eye exam this morning by the ophthalmologist and his retinas are still immature but there is still no sign of ROP (retinopathy of prematurity.)
• The 2 week course of EPO he was on (to spur on blood cell production) is over and his hematocrit and reticulocyte counts look beautiful.
• He's on day 2 of an oral steroid to help heal his lungs, and make them function better.
• He will have 5 two month immunizations soon.  They typically give them at 2 months when babies are 1800 grams.  Of course, he's not there yet so they may wait until a few days after he is 2 months when he is both 2 months and 1800 grams.
• He will transition to formula when he gets close to discharge but is still on a regimen of donor breast milk fortified with HMF (human milk fortifier) and neosure.
• He is still on iron (normal preemie supplement) but off vitamin D.  His last labs show he doesn't need this supplement anymore!

In addition to bottle feeding, having Wyatt in clothes is SO FUN.  Not because I like to dress him like a doll but because it's a normal baby thing in this not-so-normal world we live in right now.  And isn't he cute?

Blue Lips

Yesterday while bottle-feeding Wyatt, I noticed that he stopped sucking.  When I said that, the physical therapist "helping" with the feed replied, "I think he stopped breathing."  She calmly encouraged me to pat him and he relatively shortly began breathing again.  That was the scariest moment of my mommy life so far!  Preemies forget to breathe sometimes.  That said, I looked forward to today's feeding despite our moment yesterday.  At each care time (9, 12, 3, 6) we assess Wyatt to determine his feeding readiness.  If he's awake, alert, and rooting (looking for food, essentially), we'll offer a bottle.  If he's asleep, not alert, not looking for food, we'll put his whole feed in the feeding tube.  He has to really want to feed to get it.  We want him using his energy (when he's alert and awake) on bottle feeding, hence the assessment regimen.

He's still growing, up to 3 pounds, 10 ounces today.  He's taking 32 mLs with each feeding (part bottle, part feeding tube) which is just slightly over an ounce!  He gets one or two bottle feedings each day, depending on how hectic his day has been and how ready he is for feeding.

He is still back on the nasal cannula and moved from low flow (not heated) to high flow (heated) and back up to 2 liters.  The nurses put it well today - it's not that he's moved backward or gotten sicker, we just moved him before he was ready.  So, we're back to giving him the help he needs before pushing him off again.

Wyatt has begun 3 doses of Lasix (a diuretic) to help (again) flush some of the fluid out of his system which should help him breathe better.  In addition, tomorrow he'll begin an oral, systemic steroid to help boost his breathing capacity and lung growth.  It will be a 10 day tapered dose, starting with something more concentrated and tapering off to a lower dosage until he's done.  This should help him get over this hump and allow him to breathe with fewer de-sats in his days and lower flow and, eventually, no support at all!  

At this time, one thing the docs and nurses want to rule out is pulmonary hypertension.  There's a good chance he has this condition (something about how he oxygenates his blood) and he's likely to grow out of it soon as he gets older, bigger, and stronger.  That said, it's not something they treat but would give us an answer as to why he's de-satting (not using his oxygen well) so frequently.  Because of all this, an echo cardiogram was done today (all while inside his isolette - it's pretty amazing).  The images and information from this has been sent to Children's Hospital where it is read and interpreted by a pediatric cardiologist and we'll receive the results within a few days.

And, he's 8 weeks old!

Mommy's Big Man

He continues growing as much as we could hope.  He weighs 3 pounds, 8 ounces and takes a bottle each day.  He seems to have mastered the preemie challenge of suck, swallow, breathe with utter ease.  He has the nurses (and his parents) amazed!  He had his 3rd bath recently and continues to wear clothes.  I washed his first load of dirty laundry tonight!

I love this picture.  Looking around, taking in his world.

2 Steps Forward, 1 Step Back

I don't take back a single thing I said in yesterday's post.  That said, Wyatt had a rough night last night and had to go back on the nasal cannula with a little oxygen support.  This is how things go in the NICU and although we're disappointed with that, there are other celebrations to be had.  He gained almost 2 ounces overnight, weighing in at 3 pounds, 4.6 ounces and the nurse has him in clothes!  We've been waiting for this day!  I've got all my preemie outfits washed and ready so watch for many pictures of our clothed little cutie.