16 Weeks!

One whole week home! and finally our first weekly photos NOT in the hospital. You can do so much more in the comfort of your own home. We’ve been taking weekend photos with the GUND teddy bear below to show how much August is growing. The fun part is that I had/have this exact same bear – though it’s been well loved. I named mine Alex. And I’m looking forward to see what August names his and if it will become a favorite like mine did for me. I couldn’t sleep without it. You can see all the weekly photos here!

week 16

16 Weeks

August William:

16 Weeks new, 2 weeks corrected. Just under 8lbs

Enjoys a little bit of tummy time each day, and shows some decent head control when laying on mom or dad’s chest. Eating ever 3-4 hours at night and 2-3 hours during the day. I spit up alot. Had my first bath at home, it was glorious.

A few more pics from our 16 week photo shoot!

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Love that dad can get on the floor to play with me!

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The chub!

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Love, August – Letter One

Dear Family and Friends,

I’m super excited to be writing my first blog post now that I’m home! I’ve overcome so much these past several months and I’m getting stronger and stronger every single day. Mom and Dad cannot thank you enough for the out pouring of support, understanding, and love that has been received from everyone. So many of you have done so much for us along the way and we truly appreciate every bit of help, concern, thoughts, and prayers.

Now that I’m home, I ask that you continue to support me as I grow. Please remember that I’m still a preemie. Though I’m not in the hospital anymore, and I’m much bigger and older, being a preemie doesn’t have to do with my size or current age. Being a preemie is about being born early and because of that I still continue to have special needs.

My immune system isn’t completely developed yet. I learned from Doctors in the hospital that babies get their antibodies to work on their immune systems in the last trimester of pregnancy. I have been getting some since I’ve been eating my mom’s breast milk this whole time, but alot of my immune system development I have to do all by myself which will take time. So until I can do that, I’m going to need you to please not visit me if you are feeling sick, were recently sick, or have been caring for other sick people or children. Even if you just have a cold, please stay home. I know you really want to meet me and I really want to meet everyone too, but even a common cold can make me very sick.

My respiratory system is also still vulnerable. This is the hardest for my parent’s to explain because from the outside nobody can tell what my lungs look like. But my lungs are still immature because of being born early and because of all the breathing support I was on in the hospital. Because of this if you come over to my home please don’t wear any strong perfume or cologne. Also, if you smoke I am going to need you to change your clothing and refrain from smoking before you visit me. My lungs are very sensitive and cannot take even the smell of second hand smoke. You’ll also notice I don’t spend alot of time in my baby swing because my parents want to be sure I’m always positioned in a way that my airway is not kinked. They may remind you of this when you hold me.

And, because of this crazy weather, RSV and the flu are still around. RSV (respiratory syncytial virus) is a respiratory virus that isn’t any worse than a common cold, but for preemies like me, the virus can be quite different and very scary. Babies like me that were born before 36 weeks (I was 10 weeks before even that!) are at highest risk for complications like bronchiolitis, pneumonia, and other serious breathing problems that could but us back in the hospital. Sometimes the side effects are so bad they can be fatal for babies like me. Preventing the spread of RSV can be very difficult. The virus is spread through physical contact or through the air if you sneeze of cough. RSV can live on hands for up to 6 hours and on surfaces for up to 12 hours. It spreads very easily, especially by children. So please understand when my parent’s don’t have visitors or take me to parties during this season both this year AND next year. (October through April in the Northeast)

Regarding visits – I want to meet you as much as you want to meet me and it’s important to please ask my Mom and Dad when a good time to visit would be and also, please be mindful of how long you stay. Because my sensory system is also learning how to cope with my new world, I may get overstimulated easily. In the NICU I was kept in a warm, dark, mostly quiet place and I slept alot. I still need lots of sleep and rest because that’s when I grow. If I’m asleep when you arrive, please allow me to keep sleeping. I need all my energy to eat, grow, and thrive. Too much stimulation or over stimulation may set me back. Please understand and respect my space if I need it.

Please know that this letter is not mean to hurt or offend anyone. It is simply meant to show that even though I may be home, I still have special needs because of how early I arrived. Thank you for understanding and respecting my parents decisions to keep me happy and healthy. They have been through one of the biggest challenges of their lives and we are finally home, safe and sound.

We know that this is different for you. It is different for us, too.

Hugs (but no germy kisses)

Love, August

home is way more fun than the hospital

home is way more fun than the hospital

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.)

Quick Update!

If you haven’t guessed yet, we don’t have much free time to keep up with the blog and for us, that’s a good thing. The time at the hospital is spent with August, holding him, feeding him and changing him. We’re not sitting on the sidelines anymore. When we’re not at the hospital, we’re getting ready for Auggie to come home. That means working hard to get our projects wrapped up in the office and organizing everything around the house so he has a place to sleep and play.

We really appreciate all of the support we have received, so I thought the least we could do is provide a quick update and a lot of pictures. 🙂

August is in the home stretch. I didn’t want to use that as the title of this post because there is a chance it is a long stretch. He has come off his last medicine, which was caffeine. We needed to wait 5 days for that to get out of his system before we can really tell if he was ready to be off it. Yesterday was day 5 and he seems to be doing well. What they are looking for are referred to as spells. I think we’ve explained these before, but a quick recap: No drop in heart rate, respiratory rate or oxygen saturation in his blood. He needs to go 5 days without a spell before he can come home. In those 5 days, he also needs to be able to sit in a car seat for 2 hours without a spell. As soon as he as one spell, the 5 days gets reset. (This is the reason it can be a long stretch.)

That’s what we’re waiting for. In the meantime, we are helping him learn to eat. Meg has been able to nurse him fairly successfully for his age. He is also pretty darn good at sucking down a bottle. He is still on the fortified breastmilk, but Meg can nurse him whenever she is there, usually 3-4 feeds a day, more as he’s getting closer to coming home. We are also letting him tell us when he wants to eat instead of waking him up every three hours to eat.

So that’s where we’re at, and now for the good stuff, here’s where Auggie’s at:

First bath!

First bath!

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Getting burped like a big boy

Getting burped like a big boy

Taking a bottle from mom

Taking a bottle from mom

I got a crib!

I got a crib!

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I'm ready guys, let's go home!

I’m ready guys, let’s go home!

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.

First Step!

No, August isn’t walking yet. (Thanks goodness, could you imagine a preemie walking about?!….honestly I think it would be creepy.) He’s making the big step towards coming home, stepping down from intensive care to special care today! And as part of that move, we have the wonderful opportunity to move him to a hospital closer to home. We will miss MGH so much. The care team and doctors truly are world class and we’ve been well cared for. This is probably a bigger day for Mom and Dad than little Auggie.

A quick Auggie update and then some pictures 😉 Auggie has officially been in hospital care for 53 days.  He’s been off all supported breathing/oxygen for the last week.  He’s reached 4 lbs today! Up 1 lb 9 ounces since birth.  And he’s 1 1/2″ taller. He’s 7.5 weeks new making him now 33 5/7 days adjusted.

August and Mom and Dad still have quite a bit of work ahead of us – the next step is learning to feed by mouth.  Auggie… not us, though Matt sometimes still questions how capable I am.  That could take another four weeks or another six, it will be whatever August needs.

And since more than once we’ve have people say “once he reaches 5 lbs he’ll be home,” we’ll take a minute to bust that myth. Obviously weight gain is extremely important, but there is no magic number. The real test for coming home is:

1) Need to prove he can suck, swallow, and breath all at the same time.  (Also known as eating.)

2) He needs to be able to hold his own temperature in an open crib (he’s actually checked this off already)

3) He needs to go five days without any spells.  (A spell is a drop in heart rate, apnea, or a drop in oxygen saturation.)

Anything else on your mind? Matt and I are happy to answer any questions you might have about August.

And now for the cuteness, and a throw back to our first week.

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Touchdown! Auggie was cheering for the Patriots already!

week 7 with bear

7 Week photo with his bear!

August is 1 week old!

1 Week photo with his bear!

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I can’t get enough.

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He was about three weeks in this photo.

#theonesiesaysitall

Bonus post due to the Blizzard!

Those following us on other social media may have seen the big milestone we reached over the weekend while celebrating Auggie’s six week birthday: we got to dress him for the first time!  We may have waited longer than most, but I’m sure it was the same experience all other parents have of dressing their newborn in an outfit they picked out – pure joy!  (and fear the onesie will get stuck on their head.)

No more chit chat – just some fun photos marking the occasion.

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Onesies go on and off great from the bottom too. Helpful with all those wires!

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This was a two man job.

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Tada!

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Such a big boy. Have to admit, I definitely got those first mom feelings over the weekend of “just stay little forever.” But not this little – grow, grow, grow then stop, is that an option?

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Auggie an his little bear buddy. Can’t wait to see what he names the bear. I had the exact same one, his name was Alex.

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#theonesiesaysitall

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Couldn’t be more proud of our handsome little man.