56 days and nights

After 56 days in the NICU, we are happy to announce that Noah is coming home tomorrow!!!!!!  

We are so very excited!!  Grace will finally be able to meet her little brother. 

His birth weight was 1 pound, 10 ounces and he is now 4 pounds exactly.  He's overcome ventilators, feeding tubes and grown like a champ.  Noah has shown us what a true miracle looks like. 

This experience has been filled with prayer, hope and joy.  There were tears of sadness, of fear and of happiness.  We could not have made it through without the support of our family and friends.  We are absolutely surrounded by the best people in the world.  Thank you all so very much for everything.  We give thanks daily to God for all the blessings in our lives.  

I just can't wait to have my family all under one roof!  

We will continue to document his journey at noahsincrediblejourney.blogspot.com

Almost home?

Noah is officially 3 pounds, 10 ounces!  That's two whole pounds more than he weighed at birth. 

He's taking every feeding orally (through breastfeeding or bottle feeding), but still has his feeding tube in and will for a little longer.  He'll be in an open air crib before we know it!

Greg and I visited him yesterday for bath night.  He fell sound asleep in his daddy's arms after bath and dinner.  :)

The nurses are already talking about how much they'll miss him which is a sign that our little bird will hopefully fly home soon!

Day 47

Today is Day 47 of Noah's NICU stay. The time passes both excruciatingly slow and extremely fast.  I'm blessed to spend my days with him and my nights with Grace but I'll be a happy mom when my entire family is under one roof.

Noah Update

Noah Update:

Our little sweetheart has doubled his birth weight (and then some!) and is tipping the scales at 3 pounds, 8 ounces today. 

He's almost regulated his body temperature enough that he should move to an open air crib in a week or so.   

Feedings are going really well! He's both breastfeeding and bottle feeding and can make it 20 or so minutes before wearing himself out.  His face, arms and legs are slowly starting to plump up.  The next step is to get his feedings on "ad lib" where he directs every feeding time.  And get that stinking NG tube out! It's going to be a while before we get there but he's working hard!

We'll know more about his liver levels on Monday. 

Noah has so much personality and is an absolute joy to be around.  We can't wait to get him home! Right now we are still shooting for a Christmas homecoming.

When he gets home, we'll have a visiting nurse who will monitor him for a while.

Update

Update:  Noah is doing really well!  His red blood count has improved, his liver enzyme levels are improving and he's steadily gaining weight.

We've started both breastfeeding and bottle feeding.  He's doing really well breastfeeding but was quite worn out and too tired to bottle feed today. 

I'm here all day today and we are working on feeding on demand. 

The nurses and staff are optimistic that he'll master bottle feeding soon and day the only thing keeping us in the NICU is his weight.  He needs to be at least 4 pounds to go home.  He is 3 pounds, 1 ounce today.  We are still looking at bringing him home before Christmas. That could be one week or one day before, we won't know until we get closer.

We aren't sure what the future holds as far as developmental issues or delays.  Every test he taken has come back clear, but many IUGR babies have issues with eye sight, asthma and allergies and/or delays in speech or reaching physical milestones.

Those are scary, sure, but what's most important is that he is alive, healthy and thriving.

We are so blessed and we cannot wait to bring him home so that he can finally meet his big sister!

Much to be thankful for.

Hope

Resilience

Miracles

Two months ago, I was laying in a hospital bed, talking to Greg on the phone, wondering if I would make it home for Thanksgiving and if I would still be pregnant at that point.

I woke up that morning repeating "Today I am still pregnant".

Many times I thought to myself "I just want this to be over".  I didn't really know what "over" meant exactly but I knew I wanted to move on to the next phase of whatever the Lord had in store for me.  

I find myself fighting His plan even now.  Asking Him to hurry it up so that we can move on to the next phase and the one after that, even though I'm not sure what those phases even hold.  I just know that the one I'm in now is slowly squeezing the hope, joy and energy right out of me.  

Lately, our schedule has been so full that I'm physically, emotionally and mentally feeling the effects of it.  I wake up at 4am to pump, finish up around 4:45 (my morning pump is epic since I'm not pumping in the middle of the night any longer), get everything cleaned up, shower, pack my lunch and get Grace's cup and breakfast ready, start waking her up, get her dressed (this is a feat in itself, daily), get her to daycare, drive to the NICU 45 minutes away (without traffic), pump, feed Noah, snuggle, meet with the nurses and his neonatologist, drive back to Racine, pump, work, pick up Grace, get home, dinner, running around, pass out. 

Lately I've pushed myself to the edge of exhaustion so many times that I literally just fall asleep. My body aches, my incision hurts, my head pounds and I've pushed too hard.  In working on slowing down, but there really isn't much I can cut from that schedule.  I'm down to 6 pumps a day and that's as low as I'm willing to go right now. 

The thing is, as a mom, you don't have a choice, you just do it. You do it because your family needs you. All moms do this, NICU moms just do it on fumes.

I'm reading "Early Daze" by Jennifer Roberts and this passage is spot on.  This is how I feel almost every day.  I can't snap out of it and I just hold on and pray that this phase will end soon.  

So I pray to God, please let this phase pass. Bring Noah home, home to my arms, 4 seconds away instead of 45 minutes. As I'm praying, I run out of words to say, things to beg for, and I realize that I've lost my attitude of thankfulness. That all I can think about is my exhaustion and personal struggles.  So I still my heart and my mind and I pray without words.  I let Him see my true heart and start to trust again that He will provide what is best. Even if it's not what I want, it will be what is needed.  He knows my heart as he knows every hair on my head.  

I also know that I'm not the only one in this family and mine are certainly not the most important needs that need being met right now.  So I hold on.  

Hope. Resilience. Miracles.  That's what the bracelet I wear on my arm from Graham's Foundation reminds me of daily.  

Resilience.  Keep going. 

There is MUCH to be thankful for.  My family is healthy and alive.  We are surrounded by a village that has helped us in immeasurable ways and continues to do so, out of the blue.  BLESSED.   So whatever His plan is, I will continue to be thankful for the blessings and the struggles and pray that I can hold on to this hope without fail.  And know that when I do fail, He will ensure I am lifted back to my feet again.   I hold a miracle in our arms daily and for that, there is much to be thankful for.  

"The LORD has done great things for us, and we are filled with joy." Psalm 126:3

Pictures

I have so much to write and share, but life between driving to and from day care, the NICU, work and beyond has just gotten in the way.  I'm also passing out every night around 7:30 and sleeping as much as I can around pumping times.

So in the meantime - here are some pictures of Noah to tide you over!

Christmas blessings

NOAH WILL BE HOME BY CHRISTMAS!!

I'm so freaking excited!!

All he has to do is keep growing and feeding.  Even with the setbacks we had this week, he's still surpassing everyone's expectations!!!!

I can't wait for Grace to meet her brother and to have my whole family together under one roof!!!

A little setback

Today was "what will Missie cry about next" day at work. Everything made me cry today.  Sheesh!  Thankfully my work family is awesomely understanding.

Noah had a little setback today. He needs a transfusion because his red blood platelet count was low.  His liver is also in need of a little support in producing a specific enzyme, so he'll be on a 2 week course of treatment for that.  These are all "normal" micropreemie side effects but my heart is heavy as it means it's a little bit of a delay in his journey home.  We didn't have the best breastfeeding experience today either so I was a little bummed about that.

But we are still blessed and we are still the lucky ones.

Runner coaster indeed.

Evasion and exhaustion

I realized this morning that I'm in the stage of our NICU journey when you just hold on for dear life and wait for it to end.  The last giant drop in the time coaster ride.

Noah is growing, feeding and learning right now.  He's learning to breastfeed (which is hard work for both of us!) and packing on the ounces.  He averages a half an ounce a day in weight gain, sometimes 1 - 1 1/2 ounces in one day!

Our goal right now is 4 pounds, move to an open air crib and learn to bottle/breastfeed. Once he gets into the open air crib, the end will be in sight!!

So maybe we are on the slow climb to the top of the hill before we begin the crazy ride into bringing home a newborn.

Torn

I feel like I'm letting Noah down.

We are starting breastfeeding - not just dry feeding - and of course it's right when I went back to work part time and can't be up there all day.  It's 45 minutes each way and gas prices are already killing us, so it's almost impossible to be up there more than once a day. 

Noah needs me so much right now and I feel like I'm failing him.

I don't know what to do. I feel so torn. :(

Noah's First Outfit!

Look at his little tush! Someone got to wear his first outfit today!!!! And he's officially 2 1/2 pounds!! Grow little guy, grow!

Milk Machine

As someone who has breast fed, pumped and formula fed, I'm a huge supporter of feeding your child in whatever healthy way best for your family.   If you didn't breastfeed, there's no judgement from me, that is for sure.  Being a parent is hard work and you choose what's best for yourself and your child.  

With Grace, I struggled through inverted nipples, nipple shields, poor latch, bleeding and cracked nipples, mastitis (3 times), clogged ducts and hauling my pump around with me everywhere.  My entire life rotated around pumping every 2 hours.  I freaked out if I didn't pump exactly every 2 hours.

And then Postpartum Depression & Anxiety hit me hard.  That was the end of our breast feeding journey and we {happily} switched to formula.  Formula was EASY and freed up so much of my time and energies.

Breastfeeding is HARD work and not everyone is able or even wants to take on that challenge.   We just have to feed our kids.

With Noah, it's important that he receives breast milk for the best possible shot at growing and gaining weight.   I'm pumping and eventually we'll try to breastfeed when he's big enough and can suck, swallow and breath simultaneously.   The NICU staff supports and promotes breastfeeding in a calm and kind way.  If you can't, you can't.  You don't want to, you don't do it.  Choosing to try out breastfeeding again, they are really supportive and encouraging.  I meet weekly with an International Board Certified Lactation Consultant (or IBCLC) who has gone above and beyond in her support.

This time around, I told myself that I wouldn't stress about pumping.  It would either work or it wouldn't.  I was blessed to have a friend offer to donate her milk if pumping wasn't working.

Luckily, it has.  And I feel like an absolute superhero.   I make humans and then my body makes milk to feed them.  

This weekend, I brought over 500 ounces of frozen milk to my in-law's house.   Our freezer is too small and we don't have the budget to buy another one.  Thank God they have the space and are so supportive!  

We even practice breastfeeding.  Noah can't latch yet, but he can practice.  It's the most amazing feeling so far.  He gets fed through his feeding tube and we practice so that he associates breastfeeding with eating.  You can tell that he instinctively knows what to do but just isn't sure how to do it just yet.   How amazing though! 

Speaking of pumping, off to hook mine up for the 3rd pump of the day!  

One Seed

Amen!  This morning isn't going as planned - missing out on church and Isabelle's run - at home with a sick toddler.  But our blessings are too many to count and this stage of darkness only leads to growth.

Joel Osteen Ministries preached this morning that you have to go through a dark phase in order to grow and find joy.   The seed that is planted must bury itself in the dark soil in order to find the nutrients it needs to transform.   Without the dark place, your full potential cannot be realized.  The flower looks back and says (and I'm paraphrasing) "I'm thankful I'm no longer a seed.  The darkness was a blessing."

This stage isn't pitch black darkness because His light keeps our faith strong and our hopes high, but it certainly isn't the easiest things to go through.

I pray today for greater understanding of what His plan is for my life and for the wisdom to see trials and tribulations as blessings and opportunities for growth.

What a difference a week makes!

This is what the power of prayers, good vibes and positive thoughts does! Please keep them coming if you can and thank you for all of your support!

We are so blessed to have a little fighter and grower on our hands.  I am so humbled to be Noah's mom and so proud of our little guy.   What a miracle he is.  

34 weeks gestational age today.  This is the absolute latest I could have stayed pregnant with him.  But we know now for certain that he has done much better as an outside baby than as an inside one.  He's thriving and proving everyone wrong.  He's showing that you can be born 10 weeks early and beat all the odds.

We love you Noah Alexander and we are so very proud of you! 

Dreams for Noah

I'm writing this from Noah's bedside. He's asleep on my chest, smiling a little in his slumber.  I wonder if he dreams and if so, what those dreams are filled with.  

I have so many dreams for him. Big dreams of a healthy life, a long life, one filled with typical life things and stuff.  Days of wonder and lazy afternoons.  Dreams of falling in love, first days of school and sleeping through the night.  Hopefully not in that order. 

I dream of holding hands as we walk to the park.  Of yelling up the stairs for him and his sister to "hurry it up or we'll be late".

For normal things. Stuff. 

I dream of him running around with his many cousins.  Being best friends with them. Getting in trouble and discovering new worlds together. 

There's always this fear that lingers.  The what-ifs. But my dreams are bigger than my fear. My God is good and merciful and His plan is bigger than my fears.

I dream of dancing together at his wedding.  Of he and Greg playing catch together.  Of crawling into his big boy bed with him to read stories and snuggle.

We are the lucky ones. We are so blessed. 

Noah Update:

He's doing well, up to 2 pounds, 4.5 ounces now!   He's getting 13mls of breastmilk now which they fortify with a human milk fortifier (someone really thought hard on that name).  He's gaining weight while burning calories regulating his body temperature and doing therapy to increase his core strength.  He's on track to start bottle feeding soon and then transition to breastfeeding!  

He will even get to wear clothes soon. :)

When I Leave the Room

For everyone out there who struggles leaving their child in the NICU, heading home without them.  It's awful and it's so very hard.  It doesn't get easier, it just gets different. 

I ugly cried listening to this song and reading the lyrics as it played.  When it came to "ask the angel armies to stand by" I lost it.  Absolutely lost it.  Sitting on our couch, sobs wracking my body.   The feeling of despair, knowing you have to leave your child, feeling as though you can't protect them and keep them safe in your arms.  It's only temporary.  

My friend Sarah, one of the STRONGEST mommas I know, shared this with me.  She emailed it to me weeks ago and today I was finally able to listen.  The Lord shows Himself in both large and tiny ways throughout our lives.  This was exactly what I needed, when I needed it. 

When I Leave the Room | Natalie Grant

There's nothing more that I can do

But just fall more in love with you

And ask the angel armies to stand by

When I leave the room

I'm gonna fail you

I already have

Ten thousand times

I will fall down flat

You'll have a seat in the front row

Of everything I don't know

And all I'm trying to be

You'll see

Good night

There will be storms that we come through

In time

We will slay dragons me and you

I'll always wanna hold you tight

Keep you safe with all my might

So I will leave Jesus next to you

When I leave the room

Miles To Go Before I Sleep

The woods are lovely, dark and deep,   

But I have promises to keep,   

And miles to go before I sleep.

-Stopping By Woods On A Snowy Evening;

Robert Frost

This post is one of the ones where I hover over the publish button.  I hesitate to share my fears and also share details of my relationship with Greg.  He's amazing, but I am human.  So know that this is a tiny slice of our life and these are my emotions, raw and unedited. 

Some days, I don't want to live this life.  I don't want to die, I love my family, but I am SO EXHAUSTED.   I'm tired of leaving Noah every day come home to my family that isn't yet complete.   I'm tired of the stress - the money that is running out.  My maternity pay was held up for 2 weeks because the hospital didn't confirm Noah's birth.  So my gas tank is on empty and I have zero cash. We have to take money out of savings to pay daycare and put gas in my car.  Every time we dip into savings, I'm reminded of how expensive daycare will be with two children.  How I won't be paid when Noah comes home.  There's so much stress and so much guilt.  Greg and I aren't communicating like we should.  I'm so angry at him for things that aren't his fault.  Angry I'm never having another baby, that I had my tubes tied. Angry that I'm the one going up every day, angry that he was sick, angry that I am feeling selfish, angry that I'm recovering from surgery and not really recovering.  That I have to go back to work 4 weeks earlier than I should. Angry that I am going back to work without a baby at home.  I'm just so MAD.  

We are blessed, we are the lucky ones, I get it.  I know that.  But I want to hold Noah ALL FREAKING DAY and have our 8 weeks of maternity leave together to bond and get to know each other.  The last time I will ever be on maternity leave.  The last baby I will ever have.  Instead I'm staring at him through a 1/2 inch of plastic and holding him every second of the one hour a day he can be held.   And when I miss a day?  That's one less hour I can hold him.  And it's not fair.  It SUCKS.  

This whole thing SUCKS right now.   All these moms from my birth month on The Bump are having babies and we all were pregnant together and started a Facebook group.  The moms who are going into labor early - I tell them that there is hope and love amidst the chaos of the NICU. But I want to tell them how much it SUCKS some times too.   How you feel like you aren't in control of any damn thing. Not one thing.  How everything is a slap in the face, reminding you of your NICU baby.  From getting dressed (can I Kangaroo care in this top?), from pumping and planning your entire day around your pump, from calls daily to check on him, everything is a reminder. Even friends who post about their brand new babies - you celebrate this new life for them, but you hurt inside because you want to be the one to post about going home, settling in and sleepless nights NOW, not months from now.  And the only number you have is some arbitrary number "maybe around your due date" because NICU babies go from amazing to life threatening overnight sometimes. 

You worry that you are too lucky and that you'll somehow be punished for having a child who is beating all odds.  

I'm tired.  Beyond tired.  Emotionally, mentally and physically exhausted.   I can't sleep all day because I can't see Noah if I sleep.  I can't sleep because I am pumping every 2 hours.  That's 2 hours from the time you start pumping, so my 45 minute pump this morning means I pumped an hour and 15 minutes after I finished that one.  I'm still in the stage where my body needs to pump every 2-3 hours to know to keep my supply regulated.   After 12 weeks you can relax a little, but my job right now is keeping my supply up so that I can feed Noah what he needs.  I can't fail him at this, I just can't.  

I have miles to go before I sleep.  Next up, conference call with SSI, then pump, then force myself to eat lunch I don't want and then I start the 45 minute drive to see our miracle.   Miles to go before I sleep. 

What you don't see.

I tend to share mostly happy thoughts, fun photos and good news.  From time to time, you'll see my fears, anger and the cracks in my normally thankful and faithful demeanor.  I don't mind sharing the icky parts from time to time.  My hope is that someone else reads this and knows they aren't alone in their feelings. 

When I post this picture:

this is what you don't see:

All the wires that are attached to my child.  

The machinery that keeps him stable, keeps him fed, warm, incubated. 

I'm thankful for those wires, tubes, monitors and machinery.  They keep my baby alive.  But they aren't traditionally beautiful or awe-inspiring.  But they are blessings.  Even if they make it hard to hold Noah and took some getting used to.   

Wiped

Absolute exhaustion has hit me like a ton bricks. My brain is willing but my body is just not able.

Clear Band Society

How do you identify parents with babies in the NICU? The clear bands we all wear. They have a number on them that we have to use as a password when we call in to get updates on Noah. It's also how the NICU staff knows we are approved to come in at any time of the day. I wear mine like a badge of honor but I'll be really happy when we can cut it off and bring Noah home. 

You identify other NICU parents this way.  When you're running to the cafeteria for a quick bite, in between cares and skin to skin times, you see the other parents with bands and you immediately feel a kinship.  They're your people, they understand what you're going through.  You wonder what their story is.  How old is their child?  Do they have one or two littles in the NICU?  Do they have children at home?  Are they in the "shock and awe" stage or are they simply waiting it out until they can take their little one home?

Then you feel guilty - we are the lucky ones.  Noah is THRIVING and doing well.  Sure, we have fears.  Will his advanced feedings result in NEC?  Will his red blood count go up so that we can avoid a transfusion?  His newborn screening came back inconclusive for Severe Combined Immune Deficiency (SCID) which is an autoimmune disease.  We worry that although it's very common for that to happen, that most babies do NOT have this - and most preemies just do not have enough of the 'stuff' needed to rule it out right away, we just pray that we remain the lucky ones and that he does not have it. 

But you feel the guilt.  The guilt that you have the healthier baby.  I have friends who had shorter NICU stays who feel guilty that they "only" had to endure a week or two in the NICU.  Any time away from your child is a tragedy - we are all both lucky and unlucky.   But we are all blessed. 

You see that clear band and you know.  You know the longing, the fears, the fight.  The love, the blessings and the strength. 

A video miracle.

Those eyes, those smiles, the way he responds to my voice.  What a blessing this child is.  

I watch this video almost every day, multiple times a day, especially when I can't make it to the NICU.  He looks so much like Greg at times, and then at others he looks like my dad.  What a miracle.  

Noah Update :)

Noah update:  He's starting on 6mls per feeding today, moving to a new room while his roommate has surgery, he's regulating his own body temp in the isolette and he's starting to get into a routine (eat, sleep, alert, repeat every 3 hours).

His red blood count is a little low and we had an inconclusive test on his newborn screening.  We'd love some extra prayers that those clear up.

He's such a fun, spunky and sweet little guy and we are so madly in love with him. 
Can't wait to snuggle with him this morning!

Preemie Prints Photos

We are so blessed to have Ashley Faircloth in our lives.  Not only is she a wonderful friend, she's given us the gift of these photos of Noah when he was only 6 days old.  The day I was able to hold him for the first time.   These photos are priceless and we are SO THANKFUL that we were chosen to be the recipient of this gift.

Please, like Ashley's professional photography page at Ashley Marie Photography and even better yet, pay it forward by booking a session with her. She's a toddler whisperer and Grace was so calm around her for our family photos last Christmas.   She's a class act and filled with so much love and kindness, you'll find her an instant friend.   I'm blessed to call her mine.

Preemie Prints is an organization filled with selfless volunteers who give back to the community through these gifts.  If you know of a family in the NICU, please share this resource with them.   In the first days of being in the NICU, you are terrified, your heart is heavy and you have no idea what the future brings.  Having these photos to look back on is priceless.   Absolutely priceless.

Thank you Ashley and Preemie Prints.  We are so blessed.

See a preview of the photos at http://preemieprintsinfopage.blogspot.com/2014/11/noahs-nicu-photo-shoot.html#.VFvXAvnF-So

Like Preemie Prints Facebook page here - https://www.facebook.com/PreemiePrints
Like Ashley Marie Photography's Facebook page here - https://www.facebook.com/ashleymarieracinephotographer
View her website here - http://www.ashmariephotography.com/

I see you.

The Huffington Post recently published this narrative, titled "NICU Parents, I See You". - http://huff.to/1tIbdp0

I identified so strongly with these parts, I wanted to share and expand on them. 

I rush up daily to get there in time for cares, as they are called.  I used to take the time to get ready in the morning and realized quickly that it took more time away from Noah than it was worth.  So now I head up in my comfies.   But I rush up there daily so that I can change his diaper and do his cares.  We then do an hour or so of kangaroo care. 

The terminology is mind-boggling.  PICC lines, Andersen tubes, NEC, grams to pounds conversions, it all overwhelms you at times.  Luckily our neonatologist is patient and makes sure we understand completely before he moves on.  

I'm also Noah's advocate, so it is my job right now to make sure that he's getting the best care possible.  I pushed for him to start on breast milk and it was what caused the swelling in his belly to go down.  I pushed for kangaroo care as soon as possible.  We respect our team but I also advocate for him whenever possible.  There's something to be said about a mother's instincts.  

Doing cares amidst all the wires brings it's own set of challenges.  You figure it out, but the first few times are awkward and nerve-wracking.

I've said many times that I don't see the tubes, the wires, the mess.  I see this perfect little boy who has stolen my heart.  I love every inch of him, no matter what he's attached to.   

Pumping at the NICU is both great (I don't have to plan pumps around when I'm home!) and really hard.  You aren't home, you're working out of a bucket of pump parts and you are pumping with curtains closed and people all around you.  But you're pumping next to your little miracle and that makes it worth every second.  

I get to hold him for an hour a day.  When Greg and I go together, we split the time between us.  Every precious minute counts and we hold on to him until the nurses tell us he has to go back in his isolette.

Other NICU moms - I see you.  I carry you in my heart with Noah and you're in our prayers at night.   We understand that we are the lucky ones.  Many who came before us don't get to take their children home, hold them every day or even stare deeply into their child's eyes as they wake up for cares.   We are the lucky ones.  The blessed.   We see you.    

   

Pictures :)

These are the moments that matter.   There are fears and anxiety in between these moments, but at the end of the day, these are the things that matter.  Thank you for your prayers and goodwill.  We still need them and appreciate them every day.