November 22, 2010

Welcome Home, Andrew!

Today our miracle son saw the sky, felt a breeze, rode in a car, and spent his first moments alone with his parents since he arrived in the world on June 28th!

At exactly 21 weeks old (147 days, for those who are counting...) and just over 8 pounds (!) we got to take his leads off for one final time and leave our security blanket and face the world.  It is the end of our NICU journey, but just the beginning of what only can become a wonderful life for Andrew.

Final snuggle in room 202
Taking off his leads
Going home outfit - made with love.
That's for sure.
(Do you see a dimple here?!?)
Getting ready...

Thank you for everything...

Free at last!

Ready for the car ride!

Ahhh...heading home

Welcome home, Andrew
We are excited.  We are humbled. We are blessed. Forever grateful to the amazing doctors and nurses at INOVA Fairfax (especially our primary team) for saving our sons life over and over these past months. And we are honored for each of you who has read our story, offered prayers (so many prayers...), love, and support to all three of us when we've needed it most. Thank you. Thank you. Thank you.

Welcome home, son. We're so very glad you are here, and so proud of you!

**For each of you who are reading this post, and have followed our story, please consider taking a moment to leave a note for Andrew by commenting on this page (just click on the comment link below). The support has been overwhelming, and we'd love for Andrew to look back on this someday and realize just how many people have been cheering him on throughout this journey.

November 16, 2010

1 in 8

Our Miracle at 2 days old
Did you know that 1 in 8 pregnancies result in premature birth?

That premature birth is the number 1 killer of newborns?

That premature babies cost ten times more than healthy babies?
November is prematurity awareness month, and even now, almost five months after Andrew's birth I sometimes find it hard to believe I am one of those statistics.  I'm still amazed at those numbers.  In some ways, it shouldn't be so shocking to me. 

We've spent 140 days in the INOVA Fairfax NICU, which often has a census of 90+ babies.  Not all of those babies are preemies (some are fighting other issues) but at the same time, not all premature babies end up in the NICU either.  Prematurity is considered any birth before 37 weeks, and there are more and more "late-term" preemies who don't need NICU time, but still can have developmental problems later in life.  We've personally met more than a few parents who have lost babies due to prematurity - either at birth, or weeks or months after a long NICU battle.  And, I've seen my insurance claims (OMG - thank you for good insurance!) and know that Andrew is truly a million dollar baby.
Why?  Why prematurity happens, why this happened to us, to my new friends at the NICU, to anyone is a question that I still don't understand and struggle with on tough days.  Until now, I haven't shared Andrew's birth story on the blog.  In honor of the 1400 babies a day born prematurely, I will tell it now.

Up until 23 weeks, I had a perfectly normal pregnancy.  Andrew was measuring right on track, always had a strong heartbeat, and I felt good with no morning sickness and no complications.  We had found out a few weeks prior we were having a boy, and the excitement was setting in as I was finally needing to wear more and more maternity clothes.  On June 22, at 22w6d, I went to dinner with J and my brother, and had a slight headache and a backache.  Figuring I overdid it that day, I went to bed early.  Through the night I tossed and turned and noticed that my belly got hard a few times.  I even pointed it out to J once, thinking that maybe these were those Brandon Hicks contractions that people talk about.  It wasn't painful, and I certainly didn't think it was preterm labor!


The next morning, I felt better and headed off to work as usual.  When I used the restroom, I noticed some spotting on the toilet paper, and called my OB just to be safe.  She wanted me to come in...just as a precaution.  Worried, but just expecting to be told to rest and drink more water, J and I went in around 11 a.m.  I knew as soon as she examined me that things were just not right.  I was dilated 1 - 2 cm and just like that my perfect pregnancy was gone.  I knew it was bad.  I knew that the chances of a 23 week old baby making it were slim to none. 

My doctor sent me immediately to a maternal fetal specialist for an in-depth ultrasound, which confirmed the dilation.  My choices were nothing and risk imminent delivery, or try to get a cerclage - a stitch used to close the cervix and hopefully prevent further dilation.  In a haze of disbelief, we decided to do the cerclage.  After all we'd been through to get pregnant, we couldn't let it go without a fight.  We literally walked across the street to the hospital and by 1 p.m. I was in triage, waiting to go into surgery.

The cerclage was successful, but after 5 days of bedrest I began develop a fever - a sign of infection.  We were told that if an infection presented itself, that our only choice was to deliver, since an infection in the uterus would be very dangerous for both me and Andrew.  Not only did I have a slight fever, but I was experiencing fairly regular contractions.  I was in denial, but my amazing husband insisted on calling the doctor when my temp reached 99.1.  Another trip to Reston hospital, this time being shown to a labor and delivery room was one of the most heartbreaking moments of my life.  We decided we still wanted to fight for our child, and requested a transfer to Fairfax, which has a Level III NICU and is able to care for very premature babies.  (I'd soon learn the term "micropreemie" to define the smallest and youngest miracle babies - delivered before 26 weeks and usually under 2 pounds.)  We arrived at Fairfax around 11:30 p.m. and they quickly prepped me for an emergency c-section.  I was relieved at this decision, as I don't know if I could have labored and given birth under those horrible and terrifying circumstances.  I was certain Andrew was not going to make it.

I remember laying on the table in the OR just before the c-section, looking at the clock on the wall.  It was about 11:50 p.m.  I prayed that he would be born after midnight.  It may seem strange that at that moment I wasn't praying for him to live (I didn't think he could, even though the neonatologist gave us 30% odds for a baby his gestational age), or for me to be ok, I just wanted his birthday to NOT be on this horrible day. If I could just make it until midnight...

Andrew was born less than 30 minutes after we arrived at Fairfax hospital, at 12:07 a.m. on June 28. 2010.  He was 640 grams - 1 pound 6.5 ounces and we heard him cry twice when they delivered him. 

We still don't know why this happened, what caused my body to decide he was better off outside than inside.  We don't know why we were fortunate enough to have him survive, when the odds were so against him and so many others weren't as lucky.  We do realize everyday that we have a fighter, that we are blessed that he is with us, and that we are changed forever.  We are now part of the 1 in 8.

We love you, Andrew!
You amaze us every day.
**For more information on prematurity, check out the March of Dimes.  They are an amazing organization whose research, advocacy, and education help prevent preterm births. 

November 14, 2010

Silver Lining

There's been one silver lining to Andrew's additional NICU stay - he's off the oxygen!  After a week of antibiotics to fight the infection (we're still not sure what it was or what caused it) they began to refeed Andrew and they decided to take off the cannula to see how he did.

Look at me - I'm oxygen free!

I think I kind of like this!

What do you think, mom?
So, since Tuesday, our little man has been without oxygen.  He's doing great without it, so we're hoping it is gone for good.  J and I would like nothing more than to call the medical supply company and have them come to our house and take away the huge green missile (oxygen tank) we have sitting in our dining room.

Besides this excitement, Andrew is doing well, and definitely feels better.  The doctor is slowly building up his feeds and checking blood work and xrays to ensure he is tolerating it well.  So far, everything looks good.  We're not exactly sure how much longer until he comes home, but we are hopeful that it is before Thanksgiving.  (Shhhh....we're not telling him!)  We've settled back into a routine in our old space in the NICU. 
Sleep time

Story time
Baths (and Mohawks!)
Snuggle time is good for Andrew
and Dad!

Play time.  Look at the lights and the fish!
Modified tummy time.  Look how long
I am now!  I weigh 7lbs 11oz!
We know we are lucky that Andrew is on the mend, and that this setback was minimal.  While it stinks to still be in the NICU, we know he is on his way home soon.  We can't wait (and now we are really, really ready for it when it comes!)  Stay tuned...

November 6, 2010

The ride continues...

J and I used to have a great travel job, where we'd visit exotic destinations.  Often, the schedule was posted months in advance, but my boss always told us not to get too excited, since plans could change and sometime the government would postpone trips for various reasons.  "You're not on a trip until you are on the plane, the door is closed, and it has pulled away from the gateway." he said.  I should have kept those words of wisdom in mind this week.  Our new motto should be: "You're not out of the NICU until the baby is strapped in the car seat, you sign the paperwork, and walk out those doors with baby in hand."

Why are things so busy around here?
Last weekend, J and I talked to Dr. B about Andrew's discharge.  All was going great, he was back to eating his full bottles and we could feel the end of our NICU journey was approaching.  Dr. B agreed, and we began planning.  Thursday was the day we were shooting for.  We ran around town purchasing last minute items, finished up washing all Andrew's things, getting the house cleaned, and putting together all his various toys and gadgets that we would use when he got home.

Things were equally busy in the NICU.  Andrew had his newborn hearing screen (passed), we met with several specialists for consultations, including the surgeon who will do his hernia surgery in a few months (at about 10 pounds), a developmental specialist who will follow him upon discharge, and the eye doctors (Andrew's ROP is gone, and he doesn't need to have a followup until May!)  They changed his feeding in preparation for going home - he's been on fortified breast milk his whole life for extra calories, and now he'll be taking regular breast milk, and supplementing with two bottles of formula a day.  

Hanging with Dad on Tuesday morning

J and I also had to attend training for the monitor and oxygen that he will go home on for at least awhile.  We are ok with this, and think it will give us some peace of mind for the first weeks he's home.  The medical company that provides the equipment came to our house on Tuesday afternoon and delivered a huge oxygen tank, which is now taking up space in our dining room.  We also have smaller, portable tanks that we'll use when he goes to the doctors or out of the house.
During these hectic few days, we noticed a change in Andrew.  Starting on Monday he just seemed a little off.  He was much calmer than usual, wasn't crying as much (especially around meal time when he usually is ready to eat) and he was eating slower than usual.  Actually, Monday night he only took about 1/2 his bottle for two feeds in a row.  Tuesday, I went in and noticed the same thing.  J and I both commented to our nurses on Monday and Tuesday that he just didn't seem himself.  Everyone tried to chalk it up to something benign - we changed his formula, he's eating more volume and so he isn't so hungry so he's calmer, he had an eye exam and those can make a baby off for the day.  I even got "often when babies are ready to go home, parents panic and so they begin to imagine the baby is sick so they can stay longer."  Yeah right - after 130 days I'm ready not to spend my entire life at the NICU!!!

Luckily, the doctor took us seriously.  When we spoke with him that day, he ordered some blood work.  When Andrew spit up some of his bottle that afternoon, he ordered an abdomen xray.  Sure enough, some numbers in his bloodwork were slightly elevated (indicator of infection) and his xray showed dilation of his intestines - quite exaggerated, actually.  The poor boy was fighting something off, and especially because of the xray, they took it quite seriously.

J and I walked in that night, oblivious to all that had happened in the preceding hours.  We were carrying Andrew's car seat and excitedly talking to some of our friends in the hall about his discharge in just a few days.  Out walks one of the nurse practitioners, and says she needs to talk to us - over there in the corner.  My heart just sunk.  It's never good when the doctors or nurse seek you out.  She gave us the bad news, including that Andrew had to be moved back to the intensive care unit, that he would be getting lots of antibiotics, and he wouldn't be able to eat until the figure out what exactly was going on or he got better.  Just when we thought the ride was over, it continues. 

Not feeling well on Tuesday night.  Back in room 202
with a big distended belly.  Yes, that's an IV in his head!

Feeling a bit better on Wednesday.  Belly getting
smaller.  Yes, now the IV is on the other side
of his head.  Poor kid!
We figure this setback will take a few weeks for him to recover.  He's responding well to the antibiotics, and his bloodwork numbers are improving, but they are taking this very seriously, for which we are grateful.  We are well aware how fortunate we are that we caught this early and it happened before he got home.  Once you are discharged from the NICU you can't return, so if something happens when he gets home, he'll be sent to the pediatric intensive care unit (PICU).  We're glad he's back in his original NICU room, where all the nurses know and love him, and the doctors know his history.  Andrew is definitely feeling better (he's feisty and vocal and more alert) and hopefully we'll be able to feed him soon (he's on TPN - basically all his nutrition and calories is through an IV).

Thursday - resting.
More permanent central PICC IV now in his arm.
Notice that they had to cut his hair a bit for the
scalp IV.  Not how I imagined his first haircut!
As for J and I....uggg.  In many ways, I feel like I did the first weeks of Andrew's life.  I'm in a bit of a daze, scared, and trying to readjust my reality.  We were so focused on having him home, that changing gears and continuing to visit the NICU has been hard this week.  Of course, we are also worried about Andrew's recovery and pray that this is really just a minor setback.  It's hard not to let your mind go down the scary/worse case scenario path in situations like this.  And, it really stinks to see your child hooked up to multiple IV lines again, and not happy.

You're not out of the NICU, until you are out of the NICU.  And we are most definitely not out of the NICU!

November 1, 2010

Four Months and Happy Halloween!

Really too much cuteness lately to waste time with words.  Andrew turned four months old last week, and celebrated his first Halloween.  He made it to about noon on the 31st before peeing all over his costume!  He's up to 6 pounds, 13 oz and is eating his full bottle with every feed.  Yesterday, he got his feeding tube out, and we hope it is gone for good!  Countdown to home is on...stay tuned!

Yeah!  Four months.  I rock!
Another photo shoot?  Zzzz...
She never gives up, does she?
This is soooo boring...
No more pictures!
(I found him asleep like this the other day!)
Insane sweetness!

Arg!  I'm a pirate!
Maybe if I pretend I'm asleep, she'll
stop taking pictures

Guess not!

Eeek!  I'm so scary!

Whose idea was this dumb hat?

Notice no tubes!  Feeding tube is gone
and cannula was off to replace.
Mom is happy.  Andrew is hungry!

Really hungry.  Feed me!

Thank you!

Ahhh...full and happy!