Searching

For the past 123 days, J and I have been driving the same 15 miles back and forth from the hospital, often twice a day or more.  Most of the time we decide to take the back roads, instead of the highways that may save us a few minutes (or cause major delays based on DC area traffic!)  Many of the drives are completed with no conscious effort, the route is automatic now - we know where to look for the local police force, where traffic backups may occur, etc.  I often spend my time on solo drives reflecting on Andrew's progress, catching up on phone calls, or mentally making to-do lists.  Drives with J usually involve us catching up on the day, as it's often the only real one-on-one time we get these days.

The other night, we were driving in for our night visit, and we passed this:

I feel like it was a message just for me, given the name of this blog!  On our way home, I pulled over and made J take a picture for me.  I've been thinking about this sign the past few days - where am I finding joy?  I realized that I've been going through this process in such a daze - everything has been "on hold" until Andrew comes home.  And that is just pointless.  Andrew's homecoming is going to be stressful - it's not like he will all of a sudden be "all better" and the life that I imagined will begin.  No, he'll still be premature, have lots and lots of doctors visits, and most likely be on oxygen for awhile after arriving home.  We'll still be on lock down for the winter, we'll still need to find alternate daycare arrangements than what we had imagined, and we'll still have bills to pay and life to live.  Don't get me wrong, he'll be home with us, and we can begin to figure out our lives under one roof - and that will be wonderful!  But, there is really no sense to postpone or put off appreciating life until that day. 

So, I made a pact with myself to begin searching... to look for joy in every situation, what ever it may be.  And not to "wait" for life to begin.  Take our daily rides to the hospital.  The past few days I've turned off the radio and just looked around.  It's beautiful here.  I love the fall - the colors are just so gorgeous and vibrant.  This picture doesn't begin to do it justice (I took it through my windshield as I was driving), but trust me!



Back road to the hospital



Deer hanging out along the road - we see some
almost every night, but rarely catch them during the day



In regards to Andrew's journey, all along we've found joy in each of his major milestones.  Those are obvious to celebrate.  [Note - he is four months old and 6 pounds, 9 oz now!]  But, there are quiet moments too that have often just brushed by without notice.  I'm now trying to pay attention to those as well, and have found my heart light the past few days.

Fast asleep, curled up in Mommy's lap.
I love that he calms down when in my arms.



A rare happy and content moment before a diaper change
(usually he is screaming b/c he is hungry!)



Perfect little fingers and toes always make me smile!

Just a little reminder for all of us to keep looking for joy in unexpected places.  I know I'll keep searching.

Nesting

Finally...the nursery is just about finished!  I've been waiting to post pictures b/c I wanted it to be all the way done, when I realized the other day that this might be as good as it gets!  Once he gets home and in it, it's never going to look so organized again.  So, while it's not perfect...it's about ready for our little man to come home!


This hangs right as you enter the room.
We bought it when we first got pregnant
and I love it! 



View from door.  The chair rocks and reclines
and is soooo comfortable!



The quote is a wall decal/transfer.
Found the ABC painting at Target!

 

A bit messy over here.  The books
are waiting for a bookshelf.

  

Closet organizer which we installed.
(The other side of the closet still has
our clothes!)  Tubs of larger clothes
for when Andrew gets bigger!

 

Mirror will hang above where it is sitting, and
the bookshelf J is building will go
underneath.

 

Hand-painted letters spell his name and
match the bedding!



Hopefully Andrew will have the same
joy of reading as we do.

Things continue to go well for Andrew, and seem like they are back on track.  He's doing great with his breathing, and they are actually lowering his oxygen to .05 liter/min again.  There is a good chance he may have to come home on a little oxygen, but they are going to give him a chance to get off it.  While it will be a pain if he needs it, we'll deal with it.  Hopefully that would only be for a few months.  When we think back to how bad and immature his lungs were at birth, it's really amazing he only needs such a little bit of support now!

They are still slowly increasing his bottle feeding too, and he's doing much better this time.  His respiration rate is normal, and he hasn't had any significant spells or desats in 3 or 4 days now.  Hopefully the slower pace is all he needs.  If things continue to go well, we think we are still on track to go home in the next few weeks.

Not much else to report right now, so I'll just include some pictures for your viewing pleasure!  Andrew now weighs 6 pounds, 2 oz.  He's really chunked up in the past few weeks, and is gaining weight just great.

Life according to Andrew:

Sleep

 

Suds



Suck

Swing

Slurp



Sigh.  Life is good!

Due Date and Inching Towards Home

October 20th.  The date circled on my calendar for nine months now, is here.  My due date.

Back in January when I began my IVF cycle, who would have known it would turn out like this.  I was looking forward to a fall baby, and spending the end of 2010 as a new mother, at home getting to know my child.  I always joked that I hoped he'd come early, because I thought having a birth date of 10/10/10 would be very cool.  I didn't mean 4 months early!

Taken minutes after birth by a nurse with
John's cell phone.



If you look closely at the top of
the picture, you can see my face in the
background laying on the
operating table.  Scared to death.

Today is a bittersweet day for me.  We missed out on so many things that new parents are supposed to experience.  [A whole third trimester.  A baby belly.  Labor.  Holding our newborn son.  Leaving the hospital with our baby.]  Instead we got the most terrifying day/night of our lives the day he was born, 5 weeks until we held him the first time, and 114 days in the NICU so far.  But, we also have Andrew.  And that makes today wonderful.


Hanging out with my boy earlier today

J and I are very, very lucky that Andrew is here with us today.  I can't even imagine facing today's date if things had turned out differently after his early birth.  Our little boy is a fighter, and already has brought us so much joy.  Each day, as he gets stronger and more alert we find ourselves smiling more and more.  His personality is beginning to show too - he's outspoken, determined, and is a cuddle-bug for sure.  We love him so much!


Hey!  Can someone get me a paci over here?



Much better.



A bottle is even better!



Food coma.  Cuddles are good.



I see you, Mommy!

Just a quick update since the last post.  Things have gotten better this week.  The doctor ordered a bunch of tests to see if anything else was going on (besides the immunizations and increased feeds) to cause his spells and increased respiration rate.  He had lots of bloodwork done to look for signs of infection (none), an echocardiogram of his heart to see if he had indications of pulmonary hypertension (negative), a swallow study to see if he was aspirating when he took the bottle (he's not), and an Upper GI to confirm reflux (he is.)  Luckily, everything came back fine.  He's been spell-free for a few days now, and we are beginning to bottle-feed again.  We'll work up his feeds at a slower pace this time, and hopefully he will handle it all better.  We're hopeful that he'll still be coming home in the next few weeks, but not making any predictions on dates just yet.

But...we can't wait for that day!  It will always be one to remember and celebrate.  Who needs Oct 20th?



Happy family



Woah, Nelly!!!

Slow down, please!

Throughout this journey, the Doctors and Nurses have repeatedly told us that Andrew is in charge.  Well, he certainly is!  He gave us a clear sign the past few days that we need to put on the brakes and slow things down a bit for him.  Unfortunately, he had a bunch of spells (desats/bradys) beginning on Wed and continuing yesterday.  As always, these are so scary to see, and J and I were there for several of them.

What is so frustrating, is that we don't know exactly why he is having them.  And, since they've changed so many things since he made the big move to room 200, it could be many things.  J and I think they may have pushed him too fast to bottle feed.  He was exerting a lot of effort (evident by his high respiration rate) and we think it took a lot out of him.  Add in the lower flow of his oxygen, daily immunization shots (some days 2), and his normal reflux issues, and it is not surprising that he took a few steps back.  The good news is that there is no evidence of infection or other issues. 

Another frustration of the new room is that he has a bunch of new doctors, who don't really know him or his background.  He's had new and different nurses each day who also don't know him yet.  So even though J and I are there as much as we can, he's not getting a lot of continuity of care.  I tried to meet with his doctor yesterday, who apparently left for the day early, so we're also not getting a lot of communication directly from the doc who writes the orders.  Hopefully today I can meet with him and get some answers.

Anyway, for now things have just stalled a bit. They have stopped bottle feeding him, and he's back to getting his food through the tube over 2 hours. What doesn't help is that since he is now used to getting fed every 3 hours by mouth, the boy is hungry at feeding time! And, since he's getting the feed so slowly, he's a bit cranky (and shows it) each time it gets close. They've also moved his flow back up to .1, and when he's not having spells he's satting just great. The good news, is that his respiration rate has gone back down with all these changes, so he definitely needed a break. We'll see what today brings, and if we can get this boy moving forward again.

PS - he's been sleeping a lot the past few days, and is just so dang cute with his different poses!  He sure likes those hands up by his face.  Enjoy the pictures, and keep the good thoughts coming his way!

The Thinker



Touchdown!



The mummy

The Beginning of the End



Life is good.



Every year in college, at the beginning of the spring semester my sorority would do a "Beginning of the End" Dinner to honor the graduating seniors.  It was a time for each senior to reflect on their college and sorority experience, and to get excited about not only the last semester of school, but for what is to come.  I remember feeling a combination of happy/sad/anxious/ excited/loved during that time.

Kinda like I feel these days since Andrew moved to the step-down room in the NICU.  This is the beginning of the end of our NICU journey.

Life in "Room 200" is going well, and the reality that Andrew is coming home soon sets in more and more each day.  "When?" you may ask.  Well, that is still up to him really, but we speculate that it could be as soon as next week or the week following if things continue to progress like they've been. (GULP!  EEEK!  YAY!)

Exciting things are happening:

I can do it!



• They moved him down to the low-flow nasal cannula on Sat, and he's requiring just a fraction of the oxygen he needed before.  The amount he's on now (between .1 and .05 liters/min) is minimal, and he could go home on it if he needs to.  We're still hoping he gets off it completely, but if he is not for his homecoming, we expect he'd only be on it for a short while at home.
• For the past two days, he's taking his entire feed, every feed, by bottle!  Amazing, considering two weeks ago  he'd never even nippled a bottle before.  He has been getting pretty tired though, and his respiratory rate is a bit higher the past few days, so the doctor will monitor to ensure he is gaining weight and not burning too many calories eating.  He needs to be taking all feeds by bottle and consistently gaining weight to go home.
• He is having less desats (lowering of oxygen level in bloodstream), although he's had a few spells (bigger desats and/or heart rate drops), which we think are reflux related.  They increased his Previcid dose to help with the reflux, and he will continue to take this med at home.  The spells need to stop as well to go home.
• They began his 2-month immunizations on Monday, and he'll get one a day for about a week.  He'll catch up on a modified schedule once he gets home with his pediatrician.
• J and I took an infant CPR class (which we hope we never, never need to use) and have been bombarded with information and pamphlets from the nurses about taking him home.

On Sat evening, J and I took the night off from visiting the NICU and spent hours putting together all the "stuff" that we'll need when Andrew gets home.  The swing, bouncy chair, pack and play, stroller, activity mat are all set and ready to go.  (Fisher Price directions could use some help in some cases!)  New clothes were sorted, washed, and put away.  Our house looks like a Babies-R-Us catalog.  This is getting real!



Who needs toys or other stuff?

 

Give me Mommy or Daddy's arms and I'm all set!

We do have some (ok - a lot!) of anxiety about bringing him home.  Our safety net of 24/7 care will be gone, and while we know they won't send him home until they know he is ready, it is still nerve racking to know we will be 100% responsible for him.  He's been through so much, and it's hard not to think of him as a fragile, sick baby even though he is resilient and doing so well.  And sleep, what about sleep?!?!  All the other new parent fears are creeping into our minds too so I think the first days/weeks will be pretty stressful.  Also, as much as we won't miss our twice daily visits (and drive) to the NICU, we are going to miss the family of nurses and friends that we've made during our 3.5 months there.  Once we get home, we will be on modified lock-down for the winter months since his risk of rehospitalization is high if he gets a cold or the flu. 

But...we are so excited to finally have him come home with us, and to really begin our lives together as a family.  My due date is next Wednesday, October 20 and we are so blessed that his homecoming will be close to that date.  We are thankful every day that he is here with us, and that he is doing so well.  Unfortunately, we know others who are not so lucky.  Andrew's birth and our NICU experience has been long, painful, scary, and surreal at times.  We will never forget it.  But, we are going to bring our miracle boy home.  We are blessed, and face this "Beginning of the End" with open arms and happy hearts.

Moving On Up...

Andrew spent the first 101 days of his life in various spots in Room 202 of the NICU.  The noises, sights, sounds, and faces became familiar to both him and J and I.  It was our home away from home. 


Yeah, I can get pretty comfy even with
all the noise and lights

Yesterday he got a new home - in the special care unit of the NICU.  So, we are moving on up...or over (next door)...or down (to the step down room 200)!!  Any way you look at it, it's a step closer to the door and to bringing him home.


New digs...

J and I have been preparing for this change for awhile now...we knew he was getting close to qualifying for the step-down room, since his flow was under 1 on his nasal cannula, and he was beginning to take bottles.  We had some trepidation initially, since the change meant getting to know all new nurses and a different environment.  We know it was a good thing, since it means that the doctors all think he is stable enough to not need the intensive care anymore (and if something did happen, the intensive rooms are literally next door.)  We also know that the nursess in this room prepare him and us for the transition home, which is exciting.  But, man, change is hard!

Actually, it's not so bad.  The new room is much quieter, with a lot less activity and alarms beeping.  [Except last night around 8:00, when it seemed like every baby in the room woke up and wanted to be fed...there was dueling cries going on around the room!]  There is more space, and Andrew didn't have any problems adjusting.  A few of his old favorite nurses stopped by to check in on him, and in all he had a good day in his new digs. 


I like to help with my bottle

J and I are excited to know that he's closer to discharge, and every day can see him getting stronger, gaining weight, and needing less support and attention.  Now, much of our anxiety is around having a baby in the house and caring for him full-time on our own, like any new parents.  We can't wait for the day that we can walk out of there with him and bring him to our home, for good!


Dreaming about going home

PS - I've noticed that in most of the pictures lately, Andrew is sleeping or has his eyes closed.  I swear he's awake sometimes...but, we're usually having too much fun interacting with him to remember to take pictures.  I'll try to do better in the coming days!

100 Days of Thanks

Andrew turned 100 days old yesterday!  It's hard to believe that he (and us) have spent the last 100 days in the NICU.  The nurses and staff there have become like family, and like any family that visits for too long, it's time for us to get out of here!!!  We brought in a cake for all the nurses and staff along with a note to let them know just how much we appreciate them. 



Yup, I'm pretty good at this!



Andrew's still doing ok with his feeding, but had a few spells the other day (most likely due to reflux) that show us he is not out of the woods yet.  However, he continues to take about a  1/2 ounce by bottle each feed, and is doing well otherwise.  He's been spending more and more time awake too.  When I got in yesterday around 10:30, Nurse J said he'd been awake since his morning feed at 8 (he did fall asleep in my arms after his 11:00 bottle though).  The Nurses and volunteers have been passing him around for snuggles, since he makes it known that he is awake with his cries!  Yes, he's become "that baby" in the NICU who just won't be quiet. 

Last night, he was awake the entire time we were there - from about 8 - 10.  He was alert and happy and it was fun to see him hanging out.  We felt bad leaving him awake when we left, but Dad has to work in the morning, and we needed to get home.  Hopefully he gave the nurses a break and went to sleep!

Hanging out after my bottle making
funny faces

One other big milestone - on his 100th day, Andrew reached 5 pounds!  You've come a long way, baby!

Books, Blankets, and Boppys...Oh My!

Andrew's shower in NJ was a huge success this weekend.  My mom and sisters-in-law did an amazing job and it was wonderful to see friends and family for the first time in months.  Andrew's nursery theme is Dr. Seuss, and they carried the theme out for the shower - I loved the colorful decorations and gift bags - and the cake was delicious!!

Andrew got a whole collection of Dr. Seuss books!



SIL Cindy flew in for the day!  It was great to see you!



Mom, SIL Corrie, Me, SIL Michele, niece Julia

Andrew got tons of awesome things - pack-n-play, stroller, jumperoo, blankets, bottles, and books, just to name a few.  And clothes - oh, the cuteness of the clothes!  It's amazing that we fit everything into the car to get it home (although, packing is a super power of mine...I took it as a challenge to make everything fit nicely!)


The back seat was full too!


It was a great weekend.  Thank you everyone for an amazing shower!  We can't wait until you all get to meet Andrew in person.

Sunday morning, we stopped and visited our friends P and J on our way out of town.  We finally got to meet their sweet daughter, Abby, who is one month older than Andrew.  It was fun to see all that she can do (she's getting the rollover thing down!) and got J and I more excited to bring Andrew home.  We know Abby and Andrew are going to be fast friends and we are so happy for P and J, who are amazing parents already!

Of course, we rushed directly to the hospital (do not pass Go, do not collect $200) to visit with Andrew when we got back to VA.  We told him all about the weekend, and all the amazing gifts he received.  



He didn't seem too impressed.

Then, we got the update on how his weekend was.  He is doing great!  Since he's been doing so good with the bottle, they are feeding him a bottle each feed now (every three hours) so he takes about half the amount via bottle, and then gets the other half over the next hour in his feeding tube.  He's doing a fantastic job with his sucking, and doesn't have any breathing issues during his feeds.  Mom and Dad are learning all the tricks to get him to finish the bottle (he gets tired by the end) and are so happy we are at this stage.  Over the coming days/weeks, they will continue to up the amount he takes during bottles and wean down the amount he gets in the feeding tube.  They've also turned down the flow on his oxygen to 1/2 a liter, and he seemed fine with the change.  Everyone seems to think they will be able to get him off oxygen soon.  We can't wait for that day!

I thought I'd end this post with a little comparison of how far he's come.  The first picture is J's hand next to Andrew at 2 days old, when he weighed less than 1.5 pounds.  He's closing in on five pounds in the second picture - 4 pounds, 14 oz.  The difference is amazing!