You know you’re a parent of a NICU Graduate if:

At just over seven months old, we are finally celebrating August being home longer than he was in the hospital! For Matt and I it is very significant that his life at home has FINALLY surpassed his life in the hospital. Thankfully we have settled in well, August is thriving, and we sometime don’t even remember the difficult time in the hospital. Though at times it feels good to put our experience behind us, other times I find myself feeling guilty about “forgetting” about it. It was such a significant part of our lives, good or bad, and I feel it should always be honored. Writing about our experiences in hopes of helping other NICU parents is a way for me to continue my mental recovery. And why not start with something lighthearted to celebrate our recent milestone.

You know you’re a parent of a NICU Graduate if:

  • You turn on the garbage disposal to get your baby to fall asleep. Yes, they are crying because it’s too quite.
  • You don’t mind being “house bound” since you’ve been in the hospital for days/weeks/months and almost forgot what your couch feels like.

  • The first time a stranger in the doctor’s office waiting room asks how old your baby is you lie, and tell them “he came home this week.” You don’t want to get into a long story when you they tell them he’s actually 4 months old and they comment about how small he is.
  • You secretly smile when you catch said stranger checking out your lack of still looking pregnant (I can only say this because I’ve been through alot… I would still trade a terrible 40+ week pregnancy for what Auggie went through.)
  • You think the advice to “sleep when your baby sleeps” is ridiculous… who’s going to make sure he’s still breathing?!
  • You position your baby to breastfeed being careful of the phantom cords and leads that you think are still attached.
  • You don’t even flinch when your baby gets their first vaccine in a doctor’s office, you’ve seen them endure much worse and already know they are a total champ.
  • You give props to moms who take care of a newborn WHILE recovering from a delivery or section. All moms should get at least two weeks to recover before having to do anything but breastfeed a baby.
  • You re watch Grey’s Anatomy and realize how terribly they portrayed a NICU.
  • After being brave enough to bring your baby out in public, you can’t believe how many people you lied to in one outing, about his age. You’re not ready for all the questions yet.

  • You keep double checking that your hospital bracelet is still on each time you wash your hands, which is about 24 times a day.
  • You don’t believe nipple confusion in a thing. From early pacifiers to learn sucking, then trying to breastfeed, to hospital bottles, to whatever you’re now using at home, your baby has tried it all and likely masted at least some of those just fine.

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  • You don’t know what to do with yourself that first week when there are finally no doctors appointments to attend.
  • You finally start telling the truth about his age and prematurity, to raise awareness.
  • They finally smile, for real this time, a few weeks to a month or so after they come home and you cry all the tears because of the miracle of that smile.

All the Happy Tears

“Plan on him coming home around his due date” was the original message from the Doctors when our journey started. We of course were hoping he’d come home sooner, at the time my due date was almost 14 weeks away! 96 days to be exact. When March 19th came and went the new message was “the earlier they are born the longer their hospital stay becomes” to encourage us. The end was difficult, and I hope to find a way to share more to help encourage other micropreemie parents that happen upon this blog ,because that’s the one thing I couldn’t find, “how to survive the last few weeks of a NICU stay.”

When a baby requires intensive or special care they have a list of criteria that they must meet before they can come home – I think we discussed that before, but the basic concept is that they have to maintain their temperature, take all feeds by mouth, and be spell free for five days. The spell free being the most difficult one to check off the list. August has been gaining weight perfectly, so maintaining his body temperature was never an issue. And it took time, but he is a champion eater, taking the munchkin latch bottles easily, and breastfeeding like he was born to do it (which he totally wasn’t.) It was those pesky spells keeping him in the hospital. Our discharge date would be a day or two away, and then another spell putting us back to the beginning of the five-day count. I also think it was so difficult because besides a tiny dip here and there he was a perfect little baby, quickly outgrowing all his newborn clothes before he’d ever breathe outside air! We stayed as positive as possible being, thankful for the fact that he was not on oxygen and has not had any serious health concerns (except for the prematurity of his lungs) which burden many micropreemie parents.

But then, March 30th happened. Matt and I were still anticipating a spell count now taking us to Thursday, April 2nd because of two tiny blips early Saturday morning. But the neonatologist back on for the week took a good look at August’s tiny spells and made the call to let him come home because they were not significant enough to keep him hospitalized. Matt had already gone to work and I had slept in a bit Monday morning, thinking it would be another long week in the hospital. I got the call around 8:30 am – “August is going home today.” “Really?! he hasn’t even had the car seat test yet! We’re so excited!” then the tears came. The tears I always imagined having the moment the baby I birthed was put on my chest after delivery. Those tears finally came flooding down, and honestly haven’t stopped since that phone call, but that’s ok, because they are the best tears ever.

So, August came home with us around 1pm on Monday, March 30th. All 7 pounds 7 ounces, and 20 inches of him! He had his car seat test in the morning and passed with flying colors, and he’s been the perfect little baby we’ve been hanging out with in the hospital since he’s been home. We’re going to take some time for the three of us to hibernate together for a while – and we have LOTS of follow-up doctors appointments in the coming weeks and months. Soon we’ll share him with others, but we’re probably going to wait for the snow to melt first. And if you want to meet him, you should practice your hourly/every time you touch your face hand washing/sanitizing now (insert smiley face – we’re serious.)

Our journey is not over. We’ve climbed the steepest, most treacherous part, but we still have a long way to go. But we’re hoping the rest of the journey is more like moderate hike, instead of a rocky summit scramble.

Auggie's Home

Best. Day. Ever. (Understatement.)

Happy, Confident, Independent

Many of you in the “Auggie Fan Club” helped encourage us along Wednesday when we had one of those days that our inner strength was on empty. Luckily the next day was a new one, and we filled back up. Your kind words and two perfectly timed cards did the trick.

Wednesday I was too tired to read anything – but in the past I have looked to the poem that I’ve included below to get myself back on track. I’ve shared this with close family members struggling to understand why this experience made its way onto our life path.

You can ask the question “Why Me?” (which always makes me think of Nancy Kerrigan) over and over, but there will never be an answer. I don’t think things happen for a reason, especially really bad things. Things just happen, and it’s what you do about them that makes you who you are. I share this poem not because it talks about how God makes his plans, but instead because it reminds me that I have what it takes to do this.

(Caution: this poem is a tear jerker…now you can’t say I didn’t warn you. If you do get through it though – there is a picture of a really cute kid at the end!)

How Preemie Moms Are Chosen
by Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger.

“Armstrong, Beth, son. Patron Saint, Matthew.
Forrest, Marjorie, daughter. Patron Saint, Celia.
Rutledge, Carrie, twins. Patron Saint…give her Gerard. He’s used to profanity.”

Finally, he passes a name to an angel and smiles. “Give her a preemie.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect. She has just the right amount of selfishness.”

The angel gasps, “Selfishness?! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see– ignorance, cruelty, prejudice– and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her patron saint?” asks the angel, his pen poised in the air.

God smiles. “A mirror will suffice.”

Erma Bombeck (personal communication, July 2010)

The only thing the “How Preemie Mom’s are Chosen” has wrong, is that to me, my child is perfect.

A day at the NICU

I was going to title this post “A day in the Life of a NICU Parent,” however an important thing we’ve learned about being a parent in general, NICU or not, is that the same thing doesn’t work for everyone. It’s important to understand that, respect it, and not to judge others or yourself. So instead of generalizing what we share – we’re simply sharing what works for us. We’ve also been asked about what our day and visiting schedule is like by quite a few people. Hopefully this post will answer those questions and provide insight on why August isn’t having visitors in the NICU (another common question we and our family have been answering.)

A quick background for anyone joining the party now – Matt and I welcomed our son August when I was just 26 weeks pregnant and he’ll required hospitalization until around his original due date in March.  Matt and I are people who value balancing family and working hard. I am pumping regularly to provide August breast milk now, and be able to continue to do so when he comes home.

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5 Week Photo Shoot – Auggie loved the texture of the super soft blanket.

Our first few weeks in the NICU, as warned, were an intense roller coaster.  At that time we were both off work and spending everyday at August’s bedside, or holding him, and meeting with the Doctors.  Since the new year he’s been more stable and our weekdays have become as routine has being a new parent can get. As August grows and can begin feeding by mouth I’m sure our days will change, but a look at it now:

12 AM – first official event of the day: Pump No. 1

5 AM – Wake-up call.  I take care of Pump No. 2 and Matt get’s himself ready for work.

6 AM – Matt get’s to work.  He’s getting in a full day and visiting August by working from 6am – 3pm.

7 AM – I head to work.  I’ve decided to go back part time because it was important to me not be out of work for six months. When August comes home this will stop, and I’ll take a traditional twelve week maternity leave. A quick tip if any other parents are searching for suggestions: I have built into my morning schedule enough time to SIT and eat breakfast and drink coffee.  If I didn’t have that time built it, it wouldn’t happen.  And being a pumping mom, food and coffee are non-negotiable.

8 AM – I call and check in at the NICU.  We can call whenever we want, but I know when the nurses are busy, and this time works well.  I find out who his nurse is that day and leave notes with her that I want the Doctors to take into consideration during rounds.  I’ve found this an effective way to advocate for August when I’m not at the hospital in the mornings. Also – Pump No. 3 completed.

11 AM – Pump No. 4 and if I multitask and also eat lunch during those 20 minutes I get to see August sooner.

12 PM – Meg heads to the hospital.  We’ve been trying to coordinate rides so that we just have one car at MGH. (So if you are invited to visit, a well timed ride is a HUGE help.) August is usually all snuggled up when I arrive, I get the update from his nurse and usually the Doctor as well.

2 PM – Pump No. 5 at the hospital.  I need to get this in on time, so that I can clean my pump parts, use the restroom, and be ready to change his diaper and get him up at 2:45.

3 PM – I hold August from 3-6pm skin to skin.  Best part of my day!

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Pacifier exercises – training his little mouth muscles to be ready for feedings by mouth.

4 PM – Matt arrives at the hospital to spend time while I’m holding the little guy.

6 PM – Time to tuck August in for the night.  This has become a daily ritual. I lay him down after skin to skin and he’s usually wide awake! So we take the opportunity to interact with him with the pacifier and just talk with him and enjoy him looking around, being so attentive.  Then we swaddle him up and get him comfy for the night.

6:30 PM – Pump No. 6 at the hospital.

7 – 7:30 PM – Matt and I make our way home and we usually have something quick to heat up for dinner thanks to so many generous friends, family, and people we don’t even know! (Dad’s office rocks!)

9 PM – Pump No. 7 then bedtime by 10. Then I’m up at midnight to start all over again.

Yes, by Thursday it feels like groundhog day and we’re looking forward to the weekend when we can slow down, recover, and gear up for another busy week.  And remember, this is an average day. Sometimes August has additional tests and/or procedures and we change when we hold him to accommodate, and also make arrangements to be at the hospital for a different time. If we can’t assist during a procedure I like to be there to comfort him afterwards. And if you didn’t notice – I’ll point it out: pump, skin to skin, pump again. Still not obvious? I spend the majority of my hospital time topless, part of the reason we have very few visitors. The NICU also isn’t a great place to visit…. it is still an intensive care unit and if you’ve never been in one before, it’s really scary and though we’re used to the alarms, Matt and I can be very stressed at times. We’ve decided that it will be better for everyone to wait for August to be stronger to meet people, we have all the time in the world.

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Auggie at 5 weeks. That face makes it all worth it.

Becoming Mom and Dad

The other day Matt and I took a break and walked down the street for our first lunch outside of the NICU.  Over lunch we began talking about how we’re both feeling about becoming parents and came to the mutual conclusion that so far we only feel like parents when we’re by August’s bedside.

Sometimes oral care is done with breast milk to allow August to taste it.

Sometimes oral care is done with breast milk to allow August to taste it.

We’re not shy to admit that we’re still grieving the “bringing home baby” experience that all new parents expect to have when they are thinking about starting a family.  I am so happy I have the opportunity to hold August in the NICU, but I am sad that I couldn’t hold him until he was 4 days new, and that I never had that initial skin to skin bonding and that I won’t get to try nursing him until he’s 2 months old.  Also thinking back on the delivery I only caught a glimpse of his face between the shoulder to shoulder doctors surrounding his incubator in the delivery room before he was whisked away.  I didn’t get a good look at my son until about four hours later.  And two and a half weeks into Auggie’s life, Dad’s only held him twice.

Surprisingly during this conversation we both held it together.  I’ve already lost it in Whole Foods once and I’d like to try to not do that again for at least a little while.  Through talking about how weird it is to not feel like a mom and dad yet, we also talked about how we can help ourselves through this loss of what we thought becoming parents would be like.

  • Over the past few days I’ve made sure to call the NICU each morning and night to check in on how August is doing.  At first I didn’t do this, I was still overwhelmed with the whole situation.  I’m glad I started though because it helps me feel more mom like outside of the NICU.
  • We brought in our own bed linens for August that we picked out at Babies R Us.  Seeing them on the bed and getting his dirty laundry to bring home and wash has been really helpful.  Even NICU babies pee, poop, and spit up all over the place.
  • I LOVE changing his diaper.  And please don’t tell me I won’t always love it.  On some days taking his temperature and changing his diaper and swaddling him is the only way Matt and I can interact with him.  I will always be grateful that the nurses let us be a part of this portion of his care and I check every morning when his diaper changes will be so I can be sure I get there for at least some of them.
  • We are planning on working on finishing his nursery when we’re home in the evenings.  He’s a very lucky little guy that we didn’t quite finish and now we can complete the nursery for this little person we’ve already met.  Not a lot of parents get to meet that little baby before creating a special room for them.
  • Eventually August will be able to wear clothes in the NICU.  Matt and I had specifically asked for no clothes, mostly so we can pick these out ourselves.  Again – it’s another activity that helps us feel more like the Mom and Dad we became on December 13th.

Overall each day is getting better, and we both agree that the more we get used to the NICU being part our of daily routine the more it sinks in that this is our little man and that he will be coming home with us.  Until then we are practicing patience, knowing that eventually we’ll have the “bringing home baby” experience with August.  Although, we will have the advantage of being expert diapers changers, temp takers, and feeders.  And we’ll have already learned so much about what August likes, dislikes, and how to calm him through all the time we’ll be spending with his nurses.

Cares take place every 3 hours, we temp him, change his pants, measure his tummy, then prep him for his next feed.

Cares take place every 3 hours, we temp him, change his pants, measure his tummy, then prep him for his next feed.

Mom cleaning Auggie's dribbles while he sucks on a qtip of breastmilk.

Mom cleaning Auggie’s dribbles while he sucks on a qtip of breastmilk.