Strength

“You never know how strong you can be, until strong is all you can be.”

We are remaining strong despite not knowing how we are doing so.   Everyone keeps asking us how we are staying so strong.  We are staying strong because that’s all we can do.

At any given moment, and often all at once…. We are hurting, we are angry, we are ‘fighting the constant thought reel and inner critic in our mind,’ we are grieving, we are torn, we are exhausted, we are hopeful, we are joyous, we are grateful, we are blessed, we are fighters, we are advocates, we are speechless, we are rambling, and we are parents.

And, most of all, we are united in our conviction and love for Avery Rose.

Precious Avery resting comfortably and taking lots of her own breaths (8-27-10)

Our precious baby girl soldiers on valiantly.  As of yesterday, she is now officially one calendar month old (per a previous post, we counted her one-month birthday a few days earlier because the doctors had originally told us that although the entire journey will be difficult, the first 30 days are often the most critical).

She weighs  2 lb 3 oz today (Is it possible that 2 lb is good news?  Yep, you bet your buns it is!) and her vitals have remained strong and stable throughout most of the last several days.  The variances the doctors made in her fluid input, have fortunately decreased her output, as we have all been praying for.   It was beyond wonderful to hear that information and to know her kidneys are functioning well.

A "one-month old" isolet sign for Avery - made by Sienna's lovely and thoughtful nurse, Lauren.

We were excited to see yesterday during our visit that our powerful little princess actually lifted up the entire lower half of her body with just her toes!   (you’ve gotta try this yourself when you’re done reading this post – it’s a pretty challenging thing for most, let alone a 2lb preemie!)    We silently applauded and cheered in our hearts for her heroic strength.

The doctors are very slowly weaning her from the ventilator, which is making her lungs work harder each day.  Therefore, her oxygen needs are fluctuating a bit more the last few days than previously.   Her dad calls this her “training,” and so far she’s showing good progress.

Beautiful sleeping princess Avery.

With “training” and “progress” comes challenges, and the ups and downs are often too much for me to witness.  We had a terrible scare with her vitals while visiting her last night, which made me instantly nauseous.  Fortunately, Quin kept his wits about him and helped me to a chair, then helped the nurse with Avery like he was trained professionally at doing just that.   Avery ended up recovering well, and when we finally left the hospital late last night, I felt like I had aged 10 years.   Our calls in the overnight and early morning hours brought the positive news that she was stable.

We’ve written about it before, but I’ll share again that the NICU is an eerie place where you can instantly lose energy and courage.  Most days it literally feels like you are in a slow torture as you stand among the sites and sounds and the flurry of nurses, respiratory therapists, doctors, cleaning crews, blood deliveries, newborns being admitted, crying parents, tired parents, happy parents, beeps, blinking lights, alarms, latex gloves, hand sanitizer, cries, mixed messages, “worst case scenarios,” flashing colors, and fluorescent bulbs.   I’ve shared this “slow torture” word choice with a few other NICU parents in conversation, who all simply close their eyes, and then nod quietly with absolute understanding.    Quin and I both find that few words have to be spoken between NICU parents to feel like you are the closest of friends in the universe and will somehow always be connected in ways that even our dearest friends will never comprehend (and, God willing, never, ever, ever, experience!)   There’s something that the other moms and dads that we are intertwined with, and share the quiet elevators with in the children’s ward of the hospital with, just know without speaking.

They too will spend a large portion of 2010 in this place that no one ever wants to be. They too will come to know the details of this phenomenal facility and the names and faces of the people at Inova Fairfax that we are so grateful for and so blessed to have nearby, yet wish we had never met.

Actually, we do wish we had met them….just not in this way.   If you ever meet a NICU nurse or practitioner anywhere out in the world… hug them.   Then, tell them they are a true saint.  They personify the essential word for the environment within which they serve.  Strength.

Yesterday in the sadly crowded elevator we know all too well, we met a mother who was carrying a pizza and an even heavier burden.  Her 14-year old son, Owen, is battling inoperable cancer and she was delivering him a pepperoni pizza and a smile for dinner.    I cry for her and all the mothers in those halls.  I pray for her child and all the other innocent children in those beds.  I’m quite sure Owen’s mom has no idea how she keeps moving.  Somehow she does.  Strength.

We met very early this morning with the Pediatric Neurosurgeon we had been waiting all week to talk with about Avery.  He is very respected, kind, and experienced, and was fairly encouraging given the circumstances.  Avery will have surgery next Friday to put in a ventricular reservoir.  This will be an interim procedure until she’s full term and can have another surgery to place a shunt within her tiny frame.   The success rates for these procedures are high and the benefits for her outweigh the risks.    We humbly continue to ask for your unceasing prayers for her, and extra special prayers for her increased strength until, during, and after the procedure on her head next Friday.

Avery's perfect little feet in her Daddy's hand... (8-27-10)

We also had the follow-up appointment for Quin’s hand surgery today.  They took off the massive bandages, pulled out the stitches, and put his hand in a hard cast for at least the next 2-3 weeks so it can continue to heal without risk of additional injury.   Although I know he’s in a lot of pain (in addition to the injury and the surgery, the pain meds he was prescribed made him sick and gave him insomnia) he has not complained once.    Strength.   As he was given a choice of the color for his cast, he opted for a currently very meaningful color…

Quin showing off his pink cast at Avery's bedside.

Avery Rose on her one-month birthday. MAY GOD BLESS HER AND GIVE HER STRENGTH.

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15 Responses to Strength

  1. Sarah Marshall says:

    Hi — I found you through Mike and Layla’s blog….I was a work friend of Mike’s late wife, and in an ironic twist of fate, I also gave birth to a 1 lb. 8 oz. baby 18 months ago.

    I want to give you both big hugs. You have been through so much and yes, you are right. Strength comes when you need it. And you don’t realize you are being so strong until you are allowed to show that fear, that weakness. And then it hits you like a ton of bricks.

    Our son, who we call The Great Potato, was in the NICU a long 6 months. And his issues continue to this day. And it was, and is, rough. In fact, to this day, when I hear the song that played on his mobile that the nurses let us install when he moved into a bassinet from the isolette, I have a panic attack.

    You are doing great. You are doing amazing things. You are giving back! You are thinking of others in your time of need. You are amazing people, and I wish that I could have half the strength and love that you two do.

    I wish little Avery the best, and you, the parents, too. It will get worse and it will get better. But hang on to that strength….it will get you through.

    –Sarah Marshall

  2. Shari says:

    I am a friend of Nicole Sternberger’s, and she forwarded your blog to me as my 1st child was born premature and was in the NICU. I am very inspired and touched by your story and wish you and your little warrior Avery strength. You are doing an amazing job. I pray that you can bring your baby home, and that one day, this will all be a distant memory.

  3. Nicole Malachowski says:

    Avery is beautiful! The pictures show a strong little lady….getting bigger by the minute. My, my, she really is beautiful. As parents, the two of you are amazing. You are showing what I consider to be super human courage. I am so glad you have found comfort alongside other NICU parent. You’re right, the NICU is a weird place one never knows existed…until you find yourself there. Each parent has a story, each facing different challenges. None of which you’d wish on your worst enemy. That you can find empathy for these other parents during this time says a lot about your character. What a wonderful set of family values Avery will be raised with…what a lucky girl. Stay strong mom and dad, you really are amazing people. We’ve never net, but I am so very proud of you. Know this, you are already the heroes Avery needs you to be.

  4. Stephanie says:

    Hello,
    I am Stephanie and I too, found your blog through Mike and Layla’s blog. I knew both Mike and Teresa working with Teresa before she left my company. Thank you for taking time to share your story with us. FYI…I’ve had thumb surgery at Commonwealth Orthopedics too and Dr. Cr is the best. I hope Daddy has a speedy recovery.

    Thanks again,
    Stephanie

  5. Erin says:

    Quin & Robin,

    I too found your blog through a friend–Erin Shillingburg–who provides updates via facebook. I started reading with your early posts, and have been touched since the beginning. Even though I always end up in tears I always check for updates just knowing that there is always light and the end of the tunnel. I was so excited to see that Avery continues to push and and grower stronger. She truly is a fighter, and I continue to pray for her and you. I can’t even begin to imagine what you are going through.

    Also, I want to say thank you! This blog is the reason I hug and kiss by baby girl, who is 9 months, extra on a daily basis. Your blog had made me realize that there is nothing more precious than human life, and I am truly blessed with a gift from god!

    I pray that God continues to bless you and your family with good news, strength, and energy. Keep fighting Avery!

  6. Erin and Steven Shillingburg says:

    thats a nice pink cast that you have there! you should get the nurses to sign it!

    Avery you are such a strong little girl! You have so many people praying for you and your mommy and daddy! Stay strong little princess!

    Erin

  7. Angie says:

    I am a friend of Nicolle’s and have been following your story for the last month. My heart aches for you in this journey, and I wept when you lost Sienna. I can tell that Avery is an amazing little fighter.

    I also had a micropreemie, who weighed 1 lb 6 oz at birth. We spent 156 LONG days in the NICU, so I know the pain you are experiencing and the ups and downs that feel like they will never end. We also had a bilateral bleed, which was grade IV on the right, and required a VP shunt.

    We were also given “worst case” scenarios and a very bleak outlook, with many family meetings that bring you to your knees. BUT–I want to tell you that this same little boy is 3 years old now and doing amazing! We deal with some motor delays, but I can tell you he is far from the child they predicted while in the NICU. He’s now a happy, funny, smart, and very social boy who is talking up a storm. I know when I was going through these scary months in the NICU, I needed hope in order to keep going… I found I needed to hear success stories of these little ones that did overcome, especially those that suffered a brain injury.

    There were nights we were afraid to go home, and times we questioned if he’d ever come home with us… but he did. And I just KNOW Avery will too, because she has already shown that tenacity.

    You ARE stronger than you’ve ever known and you will continue to be tested, but I promise there is light at the end of the tunnel. If you ever want to talk to someone that’s been there, or have questions about the reservoir or shunt, please feel free to reach out to me through the email I left.

    I am praying for your little angel, and for strength for the both of you.

  8. kristy workman andrews says:

    Quintin, I am LOVING the pink cast. Still praying for your sweet family daily.

    Kristy

  9. andrea says:

    know how you have dreams about whatever you read before bed, or show u watch before falling asleep? well, i read this update last nite & had a dream that Avery was all grown up & into MMA. I was one of the people wiping her face, squirting water and pepping her up for the next round in a cage fight! even her little pink shorts &sportsbra matched the tiny warrior bracelets. and, of course- she won. it was pretty awesome. kinda living vicariously through my favorite little warrior. then my alarm went off at 0955 and i giggled through a prayer!

  10. Angel Roggenkamp says:

    I am so glad that Avery is doing well. I must admit for parents that are going through a living hell you guys are amazing. In all your posts it is not all about you or the babies and now baby. You always mention other babies, parents, kids, doctors, nurses and in my eyes you guys are saints. It takes great strength to open your eyes and heart and see that you are not alone.
    As far as her one month birthday well I am so happy. For my brother and his cast well I am so proud of you Quintin. You are without a doubt a true inspiration and above all else a real good daddy. Not many men can ever hold a candle to all the challenges that came your way. When you were 5 I saw the horrible thing. I remember when you were hit by that car. I remember you bounced down that busy intersection. I still picture that image in my head and I was only 3. Then told you would never walk again. But you did. That is why I know in my heart Avery will be just like you and beat any odds she has against her. She has fighting power in her blood.
    Robin you talk about strength. And, you have amazing strength. To be a mommy to not just Avery but to Sienna and Maddie. You are a real great woman that will not give up. And, to that I am proud to call you my sister in law. With all my love, Angel

  11. Susan Mcmurray says:

    Quin, I love the pink cast! Hope your recovery continues to go well.

    Love, love, love the pics of Avery. She looks beautiful. And the one of her precious feet in Quin’s hand is priceless. Fight on, Avery!

    Looking forward to giving you a hug in person, but for now, lots of love from CA.

  12. Diane Sheridan says:

    Dearest Robin and Quin, Here I am sitting here with tears running down my face after reading the update and looking at the pictures…especially the one of Avery’s perfect little feet in her dad’s hand. I have one of me holding Brooke’s tiny foot in my hand which really let people outside know how tiny she was in comparison, also had one holding her with one hand. Avery Rose is a beautiful young lady and I am so happy that she has almost doubled her birth weight, that is a SUPER big deal in NICU. I do pray for her at 10am and 10 pm and every time I look at my pink warrior band on my wrist. My friend in Centreville VA is wearing a warrior band and so is my cousin Karen in Florida, because of this Avery’s prayer ring is growing in all directions. I could picture in my mind how she lifted her body with her tiny toes and amazing picture and you tell her that her cousin Brooke used to do the same thing in her isolette. You are always in my thoughts and prayers, I’m always here for all of you.
    Love to you all.

  13. Erin and Steven Shillingburg says:

    After reading the story that Angel just wrote about you Quintin i am fighting back tears! shes right! hugs! i hope today was a good day!

  14. Sharon Boisvert says:

    May God always bless her and give her the strength she needs to go one. My prayers are with you all everyday. Thank you for sharing your blog with me. Everyday, my strength grows stronger for you all.

  15. Susan Lennon says:

    My thoughts and prayers are with you all…..Love the PINK cast and the pictures of Princess Avery Rose. She brings tears to my eyes everytime I see her beautiful little face! Much love to you Robin and Quinn….
    Susan from Maine

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