Jesus Loves Me

Tiny Warrior Avery weighed in today at 2.5 lbs.   We are so proud of her.  She is up to 2.2 cc’s of milk per hour and holding strong on her vitals.   Other than obvious irritation with her breathing tube that she continues to let the nurses know about when they move her, she had another stable day.   We are so thankful for the wealth of prayers and love that we know all of you are sending to her and to us.  We feel the blanket of love pouring in despite the distance, and cannot possibly express our sincere gratitude enough for the kindness and caring you each provide in your communications and prayers.  Your love and compassion sustains us all, and Avery is getting stronger each day.

After Avery received a beautiful stuffed lamb that sings ‘Jesus Loves Me’ when you squeeze it, I started singing that song to her each time we visit.  The song reminds me of my youth and being at Bible School in Elizabeth, but until receiving the gift I had not thought to try singing it to her.  In the same way that Sienna responded to the tune of ‘Row, Row, Row your boat,’ little Avery seems to be most fond of ‘Jesus Loves Me.’ Each time I quietly sing it to her (and despite my apparent lack of innate singing talent) she opens her eyes and looks right at me and takes even more breaths on her own.  Other songs don’t seem to have the same positive results.   So, I repeat it over and over and over again.

Magically, tonight we watched her take her tiny pacifier that had fallen out of her mouth into her hand and put it right back into her mouth.  At first, I thought it had to be just a coincidence that her pacifier was in the exact right spot and she “got lucky” with putting it back into her mouth.  However, I then called the respiratory therapist over and said, “take a look at this…”   After we joyfully watched her chew on the pacifier for a few moments, it popped out again and landed in front of her face.  She literally took her fingers from behind it, wrapped them around the top of the pacifier, and picked it up and stuck it right back into her mouth.    His enthusiastic response was,”Wow!  That’s amazing!  We rarely ever see that with these tiny ones!”    I will never forget those precious moments and his reaction.   I look forward to hearing those exact same words, “Wow!  That’s amazing!  We rarely ever see that!” from all types of professionals in the years to come.   I deeply believe we will.

We had the good fortune today while visiting the NICU to meet the Executive Director of Preemies Today, and the Family Support Liaison for the March of Dimes.  Both are so kind and caring, and provided us with lots of hope and information.  We appreciate them so very much and look forward to utilizing more of their resources, support, and connections.  Even more, we look forward to giving back to them as volunteers as we become a success story.   For those of you who sent, or plan to send, us donations for the March of Dimes upon receiving the “Tiny Warrior” wrist bands, please know that your gift will be used wisely and will make a difference for families and babies.

I’d also like to acknowledge the wonderful staff at the front desk of the NICU.  Each of the women we are coming to know well, have touched our hearts in so many ways and they truly are the soul of the NICU.   I hope Inova Fairfax knows how fortunate they are to have these fine women.  They see so much each day, smile and care about us in simple ways during our darkest times, and their strength, smiles, and personal connections are beautiful.

We know that many churches and Sunday school classes around the world are praying for baby Avery.   If you have the opportunity to sing, “Jesus Loves Me,” I like to believe that her guardian angel Sienna will let her know.

Warm blessings and thanks from our hearts to yours.

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10 Responses to Jesus Loves Me

  1. Angel Roggenkamp says:

    Oh my gosh that is amazing she stuck her “binky” in her mouth twice. She is such a true champ.. It is so nice to hear that she is fighting right along. I bet you that Sienna has so much to do with that. This sweet little Angel will be the talk of every family fuction for years to come. She is the Roggenkamps heart. As is Sienna. They have made our family grow stronger. As I am sure Robin your family has as well. Night and day I catch myself thinking about her, Sienna, Madiie you and my brother. I often look at her pictures and just bow my head and thank the lord that he blessed everyone with her. Although God had to take Sienna he has left this living breathing Angel to share. And, that is so much more than just a blessing. It is one of kinf true love for family friends that will continue to support her in prayers as with the rest of you. Love you all

  2. Diane Sheridan says:

    I often find myself saying Jesus Loves Me, when something happens that is unusual or one of my students says something that is unbelievable, so now I plan to sing it (in my head) for little Avery. As a rule, I don’t sing when people can hear me, but I will sing it around the house and it the car. I believe Sienna Grace will let you all know when someone is singing for her sister. I also think that Sienna is singing her row, row, row your boat in heaven to encourage her sister to keep on fighting. Her photo is adorable and it looks to me like she has her mommy’s nose. Great news that she finds her pacifier and puts it back in her mouth, and I expect more amazing things from her each and every day, she is definitely amazing just like her parents. Love to all!!!!!!
    Aunt Diane

  3. Bernie & Heidi Dolobach says:

    Oh Robin so happy to hear the great news!!!!!!!!!!!!!!!!!!!!!!!!! I’m happy Avery is enjoying her special gift, we thought it was as precious as she is! So proud she’s proving a point already at her young age! Give our baby girl a kiss and tell her we love her too!!! Looks like she has red hair now? is it? How sweet she is and getting more beautiful daily! Love you guys, see you again soon.!

  4. Nancy says:

    I love this photo of Avery…how sweet and peaceful she looks! I just wanted to let you know I am thinking of you and praying! Cole has been so worried about you guys…he just loves you both so much (he has such a soft spot for Quin) and he can’t wait to meet Avery! He printed out the photo of Quin’s hand next to Avery and keeps it in his room…and he hasn’t removed his bracelet even once since it came! God hears the prayers of children and believe me, my kids are praying hard!!
    Love you!

  5. East says:

    Keep the faith brother. We’re prayin’ for ya over here!

  6. Misty Majumder-Schile says:

    This update gave me chills. What a miracle that is unfolding in front of your very eyes – a miracle that you are a part of making. What a bond that is forming between you and your brave, strong daughter. So amazing.

  7. Jen Klima says:

    Wow… that is one amazing little girl! I can’t believe she is up to 2.5 lbs and is able to reach for her paci like you described. I also love how she is responding to your singing… makes you realize the power of love. Thank you for the reminder of gratitude, celebrating the “small” stuff and taking it one day at a time… We will be singing “Jesus Loves Me” for Grace and Avery!!

  8. Heidi says:

    Robin – we continue to prayer for your little girl. What a wonderful treat for you to see her grab her little pacifier, that really is amazing. You will find such joy, hope and promise when you see her do these amazing things now and in the future.
    Keep being strong, and keep believing in Avery and her future. And like I told you before, never ever believe when someone tells you what Avery won’t be able to do, just believe what she WILL be able to do.

    Love to you all…..

  9. Lucy Gray says:

    Quintin and Robin,
    I was told of your story by our local support group for parents who have lost children, MIS/Share. I have been following your blog the last few days and can’t believe that in your current situation you have been able to share so beautifully your story. I wish I could have done what you have because, unlike most people, we know how you are feeling right now. We had boy/girl twins on November 9, 2009, and lost our son James Michael. We were not in the Fairfax NICU as long as your journey will be, but we were there long enough to grow to love the nurses, doctors, staff, and even cleaning lady (she seemed to always be there, I bet you know who I’m talking about). They are God’s angels here on earth aren’t they! Our daughter Allison Grace (Allie Grace) was there for 2 weeks and is thriving and about to walk at 10 months old. While fighting for your child in the NICU, you often have to put the enormous grief for your other child to the side to just survive. It is a mix of emotions that only someone who has had to say hello and goodbye to a child at the same time understands, while also praying for your other child’s life to continue. I bet they put butterflies on your room door and Avery’s name on the NICU board probably has a butterfly on it now to honor her sweet sister. We have embraced the butterfly as a symbol of our son and now I seem to see them everywhere. We delayed James Michael’s service for 5 months because of Allie Grace’s condition and the doctors didn’t want her to travel during RSV season in the winter. That was hard not having his earthly body in the place we wanted it for so long. We are from Mississippi orginally so that’s where we sent his body for burial. I’m happy to share his memorial program with you if that would be helpful in the coming weeks or months, and there is a book that was so very helpful to us in planning his service and reflecting on his too short life that when the time is right for you I’d love to share if you would like. But, that time comes later. At this point in your journey, all efforts are on Avery and getting her home. Because, I know beyond a doubt that sweet Sienna is being taken care of now, without any pain or suffering. She is in the arms of Jesus and the angels and that is where all parents who are Christians want their children ultimately. However, we wanted our time with them too, and it is so hard to accept that God’s plan is not our own, but one day we will understand when we are reunited with our precious children in Heaven. I hope you believe that Sienna is in Heaven because that is the only peace I could find amongst the greatest of grief possible. I would like to bring you some books and a few things and leave them at the NICU if that’s OK. I know you are likely not up for visitors, so I will try to get out there this week and will just leave you a package with the front desk ladies. I don’t want to intrude but if you would like to communicate further I would be honored, as would my husband Mike.
    With understanding and lifted prayers for you constantly,
    Lucy and Mike Gray
    Alexandria, VA

  10. Nicole Malachowski says:

    Grabbing her own pacifier?!?! Wow! That she already knows how to ‘self soothe’ is amazing…what a champion 🙂

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