Happy New Year!

Happy New Year dear friends and family.   Enjoy this glimpse into our new year’s joy…

http://www.youtube.com/watch?v=JJxPu9bIwI8&context=C3c49da2ADOEgsToPDskKzyk_rdWPV9bxkKb2T_ecz

Homecoming Day – Year One

Avery Rose - Christmas 2011

One year ago today, our NICU hell ended and Avery Rose came home with us.  After 5 terrifying months, 6 major surgeries, and the earthly loss of her twin sister, she was finally in our arms.  For the first time since her birth, we were able to hold her anytime we wanted to, without asking for permission, without an obstacle of wires, without constant monitors beeping, and without the flurry of angels in scrubs rushing from child to child.  Today, we celebrate our Christmas miracle and what feels like her truest “birthday.”   Despite our inevitable uphill journey, we cherish every second, and EVERYTHING about her is sacred to us.  We appreciate your continued prayers for our tiny warrior.

One Year

Robin finished the video and we burned a few hard discs to give to our families and one to keep for ourselves. Then I began putting it on the internet for others to enjoy. In watching the video myself, I looked at many of the pictures for the first time in months (and a few of them I hadn’t seen since last year). Doing so brought back all of the emotions of the last year. I laughed, I cried, I cried, I cried, I laughed. I started the video over again.

Then I began reading some of the posts that we have written on this blog over the past year. I haven’t read many of them since they were posted–the emotions filled my heart and mind. I remember how I felt, in general, over the past year but I guess that I had suppressed specific feelings. It must have been my way of coping with all of what had happened.

And then I listened, I mean really listened, to each of the songs that we had chosen for the video. Each of them is representative of how I (we) have felt over the past year, especially pertaining to Avery. I had heard all of those songs before, the first three numerous times, and I told Robin months ago that I would like to include them in Avery’s birthday video. She didn’t argue as she too finds each of them to be powerful. But that last song, Unwritten, by Natasha Bedingfield I had really only heard in passing. Though I recognized the beat I had never really listened to its lyrics. As I sat watching the video and actually feeling the lyrics of each song, I realized how perfect that song is for the end of the video. 

“I am unwritten, Can’t read my mind, I’m undefined, I’m just beginning, The pen’s in my hand, ending unplanned,” these lyrics slammed me to my chair and I had to sit and listen. And I began thinking. Despite all of the odds, Avery was always a warrior and she just powered on.  ”Staring at the blank page before you,” now I had no choice but to rewind and listen again. The rest of her life really is a blank page, despite all of the stuff she has been through, the sky really is the limit and the simple fact is that no one knows what the rest of her life is going to be like. Sure,  the doctors can make really good educated guesses, but aren’t those the same guesses that told us she would never (insert normal milestone here)? The simple fact is that the most certain thing that I learned from the time in the NICU is that, “every baby is different.” (Fellow NICU parents, can I get an Amen?) We heard that quote at least twice a day every day that Avery was in the hospital. I even began to throw it back at doctors and nurses when they told us that Avery would definitely/never (X, Y, Z- bad thing, bad thing, bad thing) . Now, I’m not trying to doctor or nurse bash, I am eternally grateful to them for all that they did for Avie. I’m just saying that there are very few certainties in life and even fewer in the life of a baby that was born as early as Avie. It works both ways.

“Today is where your book begins, the rest is still unwritten,” I found myself really enjoying this song. Everything that has happened to this point is her history and certainly is part of who she is and will be, but the rest of her life is yet to be known. And as a very good friend of ours (and someone who knows our journey both as an observer and also a parent of a 23 weeker) wrote, “I have no doubt that she will continue to amaze and thrill us!” How right you are, Kristin!

On June 24 I took Avie to the neurologist where I received pretty bad news. In fact, this news hit us so hard that we both refused to share it with anyone other than family and very close friends until the past few days. The doctor told us that he believes that Avie is blind and that the issue is in her visual cortex, thus there are no procedures to repair it. We took solace in the fact that if she is blind, at least it will have been from birth and therefore easier to compensate for than someone who loses their vision later in life. And then we thought about how much we had been told throughout this journey-twenty years ago our babies would not have lived. Period. Who knows what the future is going to bring in the medical field in the next few years? IF and I really stress, IF she is actually blind (look at some of the pictures and it becomes very difficult to believe that she doesn’t see anything), there could be a procedure just around the corner that could repair the issue. We really don’t know. “The rest is still unwritten.”

So, what did we do for Avie’s birthday? Well, Avie slept through most of it. In the past couple of weeks she has become pretty nocturnal. I’m not suggesting that she wakes up every few hours during the night, I’m saying she simply doesn’t sleep at night. We wanted to do something different and that Maddie would enjoy, but we didn’t want to go too far and we had decided against the traditional birthday party. We decided to pack up and go to Burke Lake Park (locals to this area have probably heard of it) where we rode the train, and the carousel then ate ice cream and watched as Maddie put on two performances in the ampitheater. Avie was awake for approximately thirty minutes of the adventure.

When we got home, with the birthday girl still asleep and a big sister who was chomping at the bit to see some presents opened and enjoy a cupcake, we did the only logical thing we could do. We had Maddie open Avie’s gifts so that cake business could get underway. At the end of it all we had quite a show with gifts surrounding a sleeping Baby Avie. I put a little smudge of icing on her lips in an attempt to get her to wake up. No dice. She slept the remainder of her birthday away and awoke sometime after midnight to start her new day. Despite the toll that it is taking on Robin and me, somehow it’s all okay.

Riding the train at Burke Lake Park

a kiss before Avery's first carousel ride

 

 

back home and ready for a party... (ummmmm)

"oh good, she's waking up... let's have cupcakes and open presents!"

 

ut oh

 

 

Decorated in love sent from family and friends. The rest is still unwritten...

Birthday Video

As most of you who read this know, Avery turns one on July 26. I promise to update more soon, but for now please follow this link to view a video that Robin made to commemorate this milestone of our Tiny Warrior.

http://www.youtube.com/watch?v=TLg5adgqA_k

Catching Up

Preparing to go for a walk.

Anytime a baby is brought home we as parents reorganize our priorities. Well, at least good parents who don’t have boatloads of money to spend on full-time care do. That deck we started staining gets put on the back burner. The friends we would like to go out with are given rain-checks. A trip we had been planning is put off until next year (and then the following year). The sleep we used to get at night comes at times that the baby is napping, if we aren’t busy catching up on another chore that had been put off. And updating a blog happens once every few months instead of every couple of days. That is life with a baby.

 

Our little one is catching up, too. Though still small for her chronological age, Avie is starting to catch up to her adjusted age. Yesterday she weighed 11 pounds, six and one half ounces-after delivering a poop that weighed at least three ounces. (I want to take this opportunity to thank the nurse at Pediatric Associates of Alexandria who could obviously see that my supply of wipes was quickly diminishing, for bringing me another package.) This gain of weight may not seem too substantial, but this is a baby that last month was just shy of nine pounds. She has gained almost three pounds in one month! HUGE!

 

Where is this weight coming from? Well, there have literally been days where she has stopped eating long enough for me to change her diaper and then started back up. I used to concern myself with being able to keep up with people I was chasing on the street, now I concern myself with keeping up with Avery’s eating. Oh, how my life has changed.

 

And as a family we have been able to start catching up with friends, somewhat. Robin and Avery visited with friends of ours from the NICU on Sunday. Their son was born exactly one month before Avie and due to them coming and going from the hospital at the same times, we became close. The pictures of the two babies playing together are priceless. But, I want to go on record as saying, Andrew, I’ve got my eye on you. You better treat my daughter right.

 

On Tuesday evening Robin told me that she wanted to go pick up a stroller that she had found on Craig’s List and that it was close to the hospital. As Avery was showing no signs of fading we decided to make it a family affair. Because we were going to be close to the hospital and the nurses that had cared for Avery at night have not been able to see her since she left, we decided that we would make an appearance. I called the NICU and spoke with one of the receptionists-the same one that so sternly warned me about signing in on the night that our girls were delivered-and with elation in her voice she told me that another miracle that I knew had gone home.

 

This little boy was born almost one month after our girls and he was at about the same gestational age, but he weighed only 13 ounces at birth. Read that again, thirteen-13-ounces. A few days after he was delivered we met these beautiful people who, despite all of the horror that they were facing, smiled and told us that they would be praying for us. One begins to feel humbled.

 

For nine months these wonderful parents never once became bitter and in fact the father recently sent me a text message apologizing for not being a good friend. They were constantly a source of support and love for anyone that ever met them. As the receptionist told me that he went home my voice broke and tears filled my eyes. She then told me that she was starting to cry and would have to let me go and that she would see us when we arrived.

 

At the hospital we caught up with the parking attendant who, on the first night allowed me to leave without paying, and for five following months would tell us his hopes that we would take our baby home soon. Then we caught up with a security guard that made fun of my pink cast and would ask us about our baby. Then we made our way up to the second floor. I have taken Avie back on a few occasions, but it was Robin’s first time back. I saw the five months of pain, followed by huge relief as if the emotions were painted over one another on her face.

 

Almost as soon as we arrived at the reception desk nurses came pouring out of two different rooms. Four of the nurses that had cared for Avie and one of the nurses that had cared for Sienna came to greet us. Everyone exclaimed how big she was and that they were all so glad to see her. The baby was passed around and cuddled. She enjoyed the love. But when she got to one particular nurse, Avery’s eyes fixed and she gently placed her hand on Michelle’s shoulder. “Auntie” Michelle cared for Avery, at night, more than any other one nurse and she was with her from the first week through her final days in the hospital and even made a song about Avery that she said she would have to now edit because Avery is no longer her “little friend” but rather she is now a “big friend”. Then, with a NICU to run, the nurses said their goodbyes and melted back into the rooms where they save babies on a daily basis. I smiled, knowing that each one of them gives their all to every single baby that they care for and that we are lucky to have had them caring for our girls.

 

It was good to catch up, it was good to see the nurses, receptionists, parking attendant, security guard, and cleaning lady. It was good to talk to my friend and congratulate him on taking his miracle son home. It was good to see pictures on Avie and Andrew playing together. It was good to hear the nurses talking about how big Avie has gotten. And it has been great to see Avie gaining weight and doing new things. It has been great to watch her catch up. It is great to be her father.

 

Now, about that deck that I began staining…

 

Happy Mother’s Day

Avery is more than 9 months old and weighed in today at 9 lb 8 oz.   She is still tiny, but is as powerful and precious as ever.  Overall, she’s very healthy and we’re enjoying every minute of her.  She smiles and laughs a ton, reaches for things, rolls over, eats like a champ, and is gaining more head control every day.   She only cries about 30 seconds a few times a week (no kidding), is sleeping really well at night, and loves to snuggle.  Being her mom is the greatest gift.    Although long overdue, here are some of the sweet pictures we’ve taken over the last few months…

 

"If someone doesn't feed me soon, this innocent sea horse is gonna lose a nose..."

 

"aaaah, yes.... nap time..."

"these people make me laugh..."

"And then... the little brown bear said..."

 

"check out my long lashes..."

"swaddle, smaddle....my feet want to be FREE!" (always)

 

"On my way to Home Depot..."

Smiling WV baby...

From smiling to cracking up...

"I think the Easter Bunny will be quite impressed with my egg decorating skills..."

 

"Okay, it's Easter and I'm looking all adorable and stuff... where's that bunny?"

 

"Thanks Easter Bunny!"

Mother's Day 2011

The Pull

Although I’ve written dozens of blog posts in my head over the last few months, none of them have ended up here.  Somehow, it has oddly felt like nothing I could write would come out correctly, or do the feelings justice.   I’ve been enjoying every moment I can with our little miracle and trying to adjust to how difficult it is to be a working mom.   For years, I’ve coached clients who struggled with how to balance being a successful professional, and also be a mom to an infant.  I had long observed that although the struggle included realities of exhaustion and time constraints, it seemed to have more to do with their maternal instincts and the sense that this time of their children’s life was irreplaceable and sacred, and way too short.  That somehow corporate politics, business deals, and high heels seem a bit irrelevant and insignificant after creating human life in your womb, and experiencing something so profound and so real at first glimpse of your child’s face.   Now, having been back to work full time since February, I’m directly experiencing this pull myself and handling it better on some days than others.  Most days I try to remind myself that we’ve been through a very long journey that makes it even more raw, real, and heart wrenching to have to “think” about business strategy and reaching goals each day, rather than just embracing what I feel that I am right now…. a mom….in its entirety.   This is not a new challenge for women, just a new one for me.  

I’m extremely blessed and fortunate that I actually really enjoy my work and have designed a career that affords me a lot of flexibility and autonomy.   I also have a wonderful husband who truly astounds me with how magnificent of a dad he is, And, it’s STILL ridiculously hard.   

So, I remind myself that frankly, I may just be tired….or grieving…or both.   I remind myself that nothing about the last few years has been easy, that my body has been through a lot, that being in the hospital under constant stress for 5 months was not a real maternity leave, that our hearts have been broken, as well as overjoyed.   I remind myself that it will likely get easier, and that there are dear friends of ours who are STILL in the NICU, so we are blessed.   I remind myself that someday I’ll ”do something” with these emotions and somehow help other mom’s in a more meaningful way, because I’ve directly experienced this “pull” myself.   I sure hope so.

Beautiful Avery - laughing as she so often does... What valuable lessons she can teach us about resilience and courage.