My Little Night Light...

Last night was Hope's first night at home!  She was so excited that she stayed up most of the night to celebrate.  Actually, I woke her up every two hours (or less) to nurse - hoping that by today we would find out her Bilirubin levels had come down.  It was an exhausting night... and today I am pretty confident that my clothes didn't match and my hair looked wonky... but I don't care.  I'm feeling that grateful.  I realized today that I forgot to mention something about Hope's delivery.  The obstetrician told us afterward that she had had a true knot in her umbilical cord.  I couldn't believe it.  Perhaps it would have meant nothing if she had been born full term.  But I can't help but think of what could have happened if she had continued to grow bigger - and that knot grew tighter.  That information made me feel a lot more grateful for her early arrival.  

This morning, Ed took over with getting Brian ready for school.  He must have swallowed his breakfast whole because it seemed he was walking into our bedroom within minutes!

"I'm just going to hang out with you and Hope before school, Mama."

He promptly climbed up on the bed and started talking to Hope and singing songs to her and saying things like, "It's okay.  Shhhh.  I love you!  Sleep tight."  He even made up an original Star Wars tune.  Check it out...

After Ed brought Brian to school, the two of us (with our mismatched outfits and wonky hairdos) schlepped over to see our wonderful (and well dressed) pediatrician, Dr. Forman.

He thought Hope looked great!  We love our pediatricians... and we have a special bond with Dr. Forman, who was there for us on the day of Gavin's seizure in the emergency room.  It was nice to see him for such a happy occasion.  

Breastfeeding is going well, but because I can't "measure" how much she's getting... I was worried going into today that she might have lost some weight.  I was psyched when she was holding steady at 5lbs 9oz!  

After the appointment, we had to bring her over to the hospital for a heel stick to check her Bilirubin levels.  Fortunately, we could go to the local hospital.  Unfortunately, we also had to get back to the hospital where I delivered - which is much further.  We forgot to bring home my pumped breast milk that the nurses stored for me!  Ed took the trip for me and I stayed home with Brian and Hope.

Brian is just so enamored with his sister - I love it.  It reminds me of how happy and in love Gavin was with his little brother!  Picture Brian's face at the end of the changing table asking a million questions about baby care.  Or picture him showing Hope his favorite toys and explaining what Star Wars or Angry Bird characters were his favorites.  While Ed was gone, Brian decided we should have a picnic on our bed - the three of us.  So we did - we watched a Scooby Doo movie and ate popcorn until he said, "Okay - now let's just talk, Mommy."

(p.s. - Yes, this is the Nap Nanny.  Please see the very bottom of this post for a note about this!)

No surprise, he wanted to talk about Gavin.  And he specifically asked me to tell him what it was like when he was a baby - and how much Gavin loved him when he came home from the hospital.  That was an easy story for me to tell - those days seem like yesterday. 

Ed and I are so in love with our little girl.  It still feels like a dream.  We are so sure that Gavin had a hand in getting his sister here safely.  

Later in the day, we got word that Hope's bilirubin levels increased.  It's not so bad that it requires her to be re-hospitalized... but it's high enough that it requires phototherapy.  I had NO idea until now that they offer phototherapy at home!  It's called a "Bili-blanket."  A home care company delivered it to our house this evening and showed us how Hope should wear it.  She'll keep it on all night long and then, tomorrow, a nurse will come by the house to do another heel stick and examine her.  If the levels come back normal, she'll be able to lose the bili-blanket.  

She actually seems to like it!  The machine that makes it run vibrates slightly and lets out a peaceful white noise.  Maybe both of us will get a good night's sleep tonight!  

And I have a bonus night light if I have to get up to pee!

**The green reclining seat you see in the photos is the "Nap Nanny."  I have the best readers in the world - and I got a ton of mail last night informing me that there was a recall on this seat.  I do know that.  I never had a Nap Nanny for the boys - and a friend gave this to me for a different use than you might think!  When Gavin was an infant and had such low tone, I used to prop him on a therapy ramp we had.  It made for great photos because he was supported.  I don't have that ramp anymore - but thought this Nap Nanny would be the next best thing for the 24,000 photos I expect to take of Hope over the next month or so.  I was getting ready for a little photo session when I put her in it on my bed with Brian.  Thank you, as always, for your concern!!**

With Love From Home...

Home.

We made it home.  

It has been a long, long day... after a long, long night... and I'm feeling very incoherent and exhausted.  Hope was rather fussy last night so the two of us were up a lot.  And she needs to be nursed at LEAST every three hours so I was awake much of the time.  That's the bad news.

The good news?  My little sweetheart is a champion nurser.  My milk is IN, people.  And those who know what that means may have done a collective "ouchie!" in my honor.  The hard part sometimes is waking her up to eat - but she needs to gain weight and she needs to get rid of her slight jaundice.  And breastmilk can accomplish both of those things!

One thing she needed to do before being declared ready for discharge was to pass the "car seat test" with a respiratory therapist.  This happened in the middle of the night.  Lucky for me, I had a rock star nurse who understood my need to document the moment.  While I slept, she snuck away with Hope and my camera!  She passed with flying colors!

This morning, as the princess slept in (and Mommy tried to keep her eyes open and her brain focused) the discharge process began.  

Hope's doctor from the NICU came in to examine her and told me her weight had gone from 6lbs, 1oz to 5lbs, 9oz.  He wasn't concerned about it that much - and actually told me that he never really believed her birth weight.  I had been so pumped with fluid before the delivery and it's likely that it got transferred to her.  She was very swollen (as was I!) and that has gone away (for her - not me - booooo!).  He also told me that her bilirubin was showing some slight jaundice.  Ed and I need to drive her back to the hospital for blood work tomorrow to check the levels again.  He told us, if needed, we could do phototherapy at home!

Brian and Ed showed up to take their girls home.  Hope and I both had wardrobe malfunctions, but we didn't care.  The "coming home" outfit I planned for her was about ten sizes too big for my preemie!  Lucky for me, I had packed an outfit that Miss Sara bought for her that looked on the smaller side.  And I had planned a "coming home" outfit - but forgot an essential part of it.  So I ended up wearing the same outfit I walked into labor and delivery wearing that had been all crumpled up in my suitcase to take back home.  Oh well.  If you think I spent a moment stressing about it, you'd be wrong.  I was so excited to get home with our little girl.

I was also VERY excited to let Brian hold his sister for the first time.  And it was a moment that we will never - EVER - forget.

He took it all very seriously and was really careful and sweet.  The first thing he said to her was, "I'm going to take care of you."  And all day, he proved that to be true.  He wanted to take her picture...he wanted to understand everything (and I mean everything) about breastfeeding...he would come to me if he heard her crying to ask, "Mom - is the baby okay?"  He is 100% invested.

Ed and I are so happy - and so relieved - that he is excited to be a big brother.  We lost our son... but Brian's heart was broken, too, when he lost his big brother.  Although it's impossible for Gavin to be replaced - and we don't presume at all that Hope could - there is one thing we are sure of.  Something we heard Brian whisper to his baby sister today.

He kissed her softly.

Then he leaned in for a gentle squeeze and said...

"I will love you forever."

And he will.  I'm sure of it.

The Night Before the Beginning...

Dear Hope,

This is it!  Tonight is our last night together in the hospital.  Tonight is MY last night as a maternity patient.  (Famous last words)  And, most importantly, tonight is the night before the beginning of the rest of our lives as a family.

As I sit here and watch you sleeping...finally, after a rough hour or so... I can't help but wonder who you are.  Will you be anything like the rest of us?  Or will you be completely and uniquely your own person?  I can't wait to find out as you reveal yourself to us.

Over the last couple days, you met your Godparents.  Two people that will be there for you to guide you in your faith and in life.  Daddy and I chose my brother... your Uncle Tom...

 and Miss Sara...

Over the last few days I have so enjoyed my alone time with you.  I'm grateful for the bonding experience of nursing - and you are a natural, thank God!!  And you and I both love the closeness of "Kangaroo Care" where I hold you in only a diaper against my bare chest.  The two of us already have a strong bond - and I hope it only gets stronger as you grow.

We will all have so much to tell you, Hope.  About the brother that came before you and the excitement we felt when we knew you were on your way to us.  

But something tells me you may already know.  

Tomorrow is the beginning of a whole new chapter in a whole new book, Hope.  Let's get a good night's sleep so we're ready to conquer our new beginning.  

What?  You find a "good night's sleep" amusing, do you?  

Great.  So, this is how it's going to be, eh?

Together...

This was the scene last night in the NICU.  I came downstairs feeling rather defeated, which I promptly poured out in my journal from yesterday.  The doctor had told me not to get my hopes up.  That Hope would need to be weaned off the C-Pap and, basically, jump through several hoops before she would be discharged.  It was likely she would be discharged AFTER I went home - which was so upsetting to me.  I sat on my hospital bed and shed some tears and worked on my pumping.  When I finally collected some colostrum (2mL!  Woo Hoo!) I wanted to bring it up to the NICU.

I got up to the NICU around 10:30 and was greeted by a very happy nurse who seemed very excited to see me.  "I was going to call you," she said.  "We're going to take Hope off the C-Pap.  Would you like to nurse her?"

WHAT?!?!?!?!?

In what seemed like a nanosecond, Hope turned a corner!  Ed had gone home to sleep for the night and it was just me and my iPhone to capture the moment.

Hope latched on and breastfed like a champ.  And we sat together for a long while - something I had deeply longed for.  The nurse and I arranged for me to come back to the NICU for feedings at 2 and 5am.  I had the best nurses last night - Kelly, Sara and Marianne in Post Partum that were super supportive and were sure that I was awoken 15 minutes before feeding time so they could wheel me up to Hope.  And then Maria in the NICU who helped me with my breastfeeding (I'm a little rusty!) and was so positive about Hope's progress.

By morning, everyone - including the doctor - was impressed with Hope's quick turnaround.  Soon the feeding tube was pulled... and the IV was cut in half... and next thing I knew, they told me she could graduate out of the NICU and into my hospital room.  To stay.

I couldn't wait for Ed to get to the hospital so he could see our daughter without any straps or wires or C-Pap.  He was so, so happy.

I was shocked... but I guess I shouldn't be surprised that everything changed on a dime.

Our little angel has quite an angel watching over her.

I'm overjoyed to have her with me in the room.  I placed her on my pillows to take photos of her sweet face and couldn't help noticing that she looked like she was floating on clouds.  I know tonight I will study her as she nurses...and begin to memorize every inch of her.  My daughter.  I am so lucky.

And we will leave this hospital as we entered...

...together.

Introductions...

The last 24 hours have been filled with important introductions... a little bit of Post Traumatic Stress Disorder... and some tears.

Last night, just hours after Hope was born, Granny and Aunt Bean arrived to meet her!  It was love at first sight.

And Aunt Bean (my sister) picked up something really wild - but not at all surprising.  Hope was born at 5:50 pm.  If you look at that, it could also look like 5.50 - or 5 1/2.  If you know our story, you'll remember that I was 5 1/2 months pregnant when Darcy was lost to a cord accident.  It took 5 1/2 DAYS for my body to deliver her in this very hospital.  I coincidentally held her for 5 1/2 hours.  And, of course, Gavin was 5 1/2 when he died.  Hope's birth time is almost like a little sign from our two angels that everything is going to be alright.

Today I got out of bed.  I had serious motivation in the NICU upstairs!  Ed wheeled me up in a wheelchair and I was able to sit next to Hope - touch her - sing to her - and tell her to listen to her angel brother, Gavin.  That he would have great advice on how to behave in order to get sprung from there quickly.  Hope is doing great so far.  She is on C-Pap and her setting has been dialed down a few times already.  It's predicted that by tomorrow she'll be off the C-Pap and maybe on a nasal cannula.  I have been religiously pumping hoping to produce breast milk so I can feed her and so far I've been able to give very small amounts of colostrum.  Ed has been trying to reassure me that it took a couple days for my milk to come in for Gavin and Brian and I shouldn't worry... but I worry anyway.  Speaking of worry, no need to worry about me.  My blood pressures came back to near normal, my pain is being managed and I'm staying well hydrated, well rested and Ed has been super-supportive.  (In other news, he's also super-in love with his new daughter which is so beautiful to witness)

Being back in the NICU is hard.  Ed and I went through 30 days in a NICU with Gavin.  And we experienced a ton of medical issues and traumatic moments and stressful hospitalizations with him.  Yet suddenly, Hope's every move sends us into a panic.  Why is she twitching?  Is she seizing?  (No... babies have a startle reflex - and that's all it is)  I am shocking myself with my fears and anxieties.  It's almost like I have PTSD - everything sends me into a flashback of either Gavin's NICU experience or his death experience.  It doesn't last long - and before I know it I'm singing to her again.  

Hope likely won't be discharged with me - which really, truly, 100% sucks.  She has to jump through several hoops before a discharge... and it's all up to her and impossible to predict.  We don't know yet if she has a coordinated suck/swallow.  We don't know if she'll eat well.  There's a lot we don't know - a lot that she'll have to prove before they say we can bring her home.  I was crushed to hear that.  And it will also be an interesting logistical issue as I won't be able to drive... yet I'll need to be at this hospital which is about 40 minutes away from my house every day to be there with her and either continue pumping or try to breast feed her.

Oy.

Nothing's easy.  But we'll do whatever we have to - obviously.

The best part of today was a visit from Brian!  I couldn't wait to introduce Brian to his little sister.  He thought he was just coming to visit me in the hospital - he had no idea that Hope had been born.  This is how it went (excuse my deep, very tired voice!)...

Brian was VERY excited to get a light saber - something we had told him he had to be at least six to get.  Needless to say, he already thinks Hope is the coolest sister ever.  

After I stopped videotaping, he looked at me and spontaneously said, "I'll be careful with it, Mama."

I was so, so happy to see Brian today.  

Finally it was time to walk (or get wheeled if you're me!) up to the NICU to meet Hope.  Brian carefully toted his gift for his sister.  Ed walked him up to Hope and made the adorable introduction...

Ed told Brian that he was not that much bigger than Hope when he was born.  Hope is 6lbs, 1oz - and Brian was 6lbs, 15oz.  Brian is showing Ed how big he thinks he was.

Brian was pretty mesmerized - and very happy...

...and when he saw his little baby sister yawn, he got the giggles.

Brian was excited to show Hope her gift... from him and from Gavin.

It's a locket.  Her monogram is on the front...

...inside she will find photos of her family - Mommy and Gavin and Daddy and Brian...

...and on the back is a note that says, "With love from your brothers, Gavin and Brian 2013"  It's a good thing I was smart enough to not engrave her "birth month."  It would have been wrong!

A family of six we will always be... but to the outside world we are a family of four once more.

After Brian went home, Ed and I went back up to the NICU to be with Hope.  The nurse was about to do some of her routine care and asked if I'd like to step in for some of them.  I was thrilled.  I took her temperature and changed her diaper.  At one point, Hope gagged and spit up on her blankets.  A bummer - but not.  I finally got my chance to "hold" her briefly while her blankets were changed.

I'll take what I can get.

And I'll be patient along the way, knowing full well that I am again just a witness to my child's journey.

I can't wait to see where Hope takes me.  Takes us, as a family.

We are proof that you just never know what life will throw your way.  All you can do is hold on.

Welcome to the World, Hope!...

Ed and I are so happy to introduce you to our daughter.  Our DAUGHTER!!  Dropped straight from Heaven at 5:50pm on November 30th... Hope Margaret came into the world about a month premature. She weighed in at 6 pounds, 1 ounce and her crying as she emerged was music to our ears.

I'm still recovering and slightly loopy from pain medication and exhaustion, so I plan to reveal more details of the day in another post.  But basically, Hope was delivered due to my blood pressure that could not be brought down despite multiple efforts in the hospital... and, much to my surprise, I went into full blown labor!  A first for me!

When Hope was delivered, the NICU doctor examined her right in the operating room and thought she had gulped down fluid which was causing her some respiratory issues.  They suctioned her and gave her some oxygen and she quickly pinked up.  Once she was brought up to the NICU, though, they diagnosed her with Respiratory Distress Syndrome due to prematurity.  As of this morning, she has already turned a corner and has been weaned down significantly.  I am hoping to be able to hold her today - say a prayer that I will?  She will probably need to stay in the NICU for another day or so - but I know better than to get my NICU hopes up.

I was very sick through the night - probably from anesthesia and pain meds.  Let me tell you - vomiting with a C-Section incision is not really all that fun!  But thankfully, I've turned a corner this morning too and am now attempting to eat some Saltines!  Yay!

I'm literally going to dump all the photos below so you can feel like you were there with us.  I am extremely grateful to my nurse - Kris Hoopes - who took wonderful care of me when I was in the hospital to deliver Darcy in 2010... and actually changed her schedule around so she could be my nurse as I delivered Hope.  It was like having a great friend in the delivery room with me.  And I'm also grateful to Deb - another wonderful nurse who volunteered to come into the delivery room with my camera and take these amazing photos for us.

We are feeling very blessed today and can't wait to see Brian this afternoon so he can meet Hope!  Thank you so much for all the love and support!

Headed to the OR with my favorite nurse, Kris Hoopes!!

Daddy arriving for the big moment!

The magical moment.

Here she is!

So happy to have a clear view of the warmer so I could see her and watch what was going on!

As of this moment, I think she's a beautiful combination of Gavin and Brian.  She has lighter hair like Gavin did!

Off to the NICU where she is in very good hands!

Shortly after my delivery they wheeled me up on a stretcher so I could see and touch Hope.