Tiny Warriors Part 2

Avery taking a nap today with her little hat covering her eyes.

Yesterday Miss Avery was having a rough day. She was stable but kept having spells where her blood pressure would drop and her oxygen requirements went up. We spoke with the doctor and he assured us that he wasn’t seeing anything that had him surprised.

Since then, though, she has been doing much better. I was a bit concerned this evening when we walked in and the isolet in her area no longer had the ultraviolet light and there was now a sheet covering it. My first reaction was obviously one of fear, but that was quieted by the faith that if there had been some dramatic event we would have been notified. Then I figured that they must have moved her again. (The day after Sienna passed away we walked in and found that Avery had been moved to the opposite end of the room.) But as I approached the isolet I noticed that it was indeed baby Avery’s. Robin and I both asked the nurse, just to make sure, if everything was okay. She told us that all was fine and that Avery no longer needed the bili-lights.

It has become my routine to look at the monitors as well as the machines that supply the medications. I do this as soon as I approach the isolet and although I really don’t know what many of the numbers or abbreviations, etc. mean, I have learned a little bit about it all. During my inspection this evening I noticed a new syringe so naturally my eyes were pulled in that direction and the letters that were written on it slowly became deciphered by my brain and the word was immediately sent to my mouth. “Feeding?” Avery’s doctor was still close by and upon hearing me say that halted his forward progress, wheeled about and looked at me. “You’ve increased her feeds?” He explained to me that he had made the order earlier in the day and that now instead of getting 1/2 cc every eight hours she is receiving 1/4 cc each hour. For obvious reasons Robin and I were both excited by this news.

We spent the remainder of the visit with Robin talking to Avery who very much seemed to enjoy the story time. Before she dozed off to sleep, our baby girl looked at us with her eyes opened wide and then yawned. Growing is a tough job.

Power Pink: Since the announcement that the bands had arrived we have had a large number of requests for them. We feel honored that so many of you are requesting them and ask that you either wear the band or place in a spot that you will see often so that you’re reminded of the battle that Sienna Grace fought and the one that Avery Rose is still fighting. We also talked at length about asking another favor of those of you who want bands.

Since the day the girls were born, both Robin and I have said that we wish that no one else would ever have to go through this hell. And then after Sienna’s passing we said that we wanted something good to come from the pain that we have been feeling. Many of you may already know that The March of Dimes Foundation (www.marchofdimes.com) is the leading non-profit organization for the health of babies and prevention of premature birth. This organization is instrumental in much of what goes on in not only the NICU where Avery is living, but in hospitals across the country. In our attempts to make something positive of the pain that has been put on us, we are asking that our friends and family members consider making a small donation to March of Dimes. We are suggesting at least $1.60 for each band that you receive. We chose this amount because it represents one dime for each of the sixteen days that Sienna was alive. We will take the total that we receive and donate it to March of Dimes in Sienna’s name. We will not require that we receive any payment, nor will we try to shame anyone who chooses not to donate, and everyone that asks for a band will receive one.  We are just trying to do something that will benefit the organization and hopefully help to ease the pressures and pains of other families down the road.   If you are mailing a donation via check, you can choose to make it out to one of us or directly to March of Dimes. Any payments of cash will be deposited into our account so that we can write one check for the donation. (I am thinking of enlisting the services of my accountant mother-in-law to assist with the bookkeeping.) Our mailing address will be on the return address label of the bands that we mail you.

Riley proudly sporting his "tiny warrior" band while waiting patiently for Avery to come home.

Thank you again for your love, continued prayers, sharing of our story, and for wearing the “tiny warrior” bands.

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16 Responses to Tiny Warriors Part 2

  1. Medea Davis says:

    Glad she is upping her feeding. And please send me some bands and I will cut you a check. I know I said 2 to 5 the other day but i have friends that have been keeping up with what is happing and they said they would gladly wear them so I really need 5. My love to you all.

  2. Mike says:

    Hey Quin and Robin,

    They moved Layla’s isolette today so when I walked in there was just this big empty spot, freaked me the hell out but she’s just across the room. I’m glad to see that they’ve increased Avery’s feed’s, the more nutrient’s she’s able to recieve the better she’ll be with growing and becoming stronger. I’ll leave you an envelope at the front desk and remind the nurses to get it to you. Continuing to pray for you all!!

    Mike and Layla

  3. Yay for increasing her feeds! You’ll be amazed at how quickly those cc’s with go up day by day – and how the milk will help her grow!

    You two continue to amaze me. And I’m thinking about you all and your warriors!

  4. Sharon Boisvert says:

    What a wonderful idea. I will send a check for $50.00. Send me 10. My prayers are with you all.

  5. Jen Klima says:

    I love the bands and also the idea to donate.. count us in for both. Please send 5 bands (I was inspired by your picture of Riley so I am ordering an extra on for Daz 🙂 and our donation is coming.

    I am glad to hear such positive news about Avery! And the reading teacher in me loves that you guys are reading to her already!!! 🙂

    As always, sending love, hugs and prayers…

  6. Cathy Sotelo says:

    I have been reading and keeping up with your story. My thoughts and prayers are with all of you. Im so sorry to hear of Siennas passing but I am thrilled to hear Avery is starting to do better. Keep up the good work baby Avery, God is holding your hand the whole way. Please tell me how to order wristbands.

  7. Angel Roggenkamp says:

    CAn I mail the money to you?

  8. Angel Roggenkamp says:

    I will be sending cash. to you in a card. I will need at a total of 5

  9. Kyrsten says:

    Hi, there! ‘Came over from Inspire.com…

    I too am the mommy of an angel and a warrior: my sons Jonathan & Joshua were born @28 weeks following pPROM @ 26 weeks (I can imagine, though, that my boys would look huge in comparison). Jonathan passed away at nearly 4 days old; Joshua survived many complications and is a delightful, healthy 3-year old. (Side note: he was joined by a 37-week “surprise” son who is now 20 months… I see them together and just weep with joy– no exaggeration, no shame in saying that.)

    I will follow your story with interest. The NICU can be a special time of hell on earth– but the day you bring home your child is beyond compare.

    Blessings and love to you all!!

  10. Diane Sheridan says:

    Robin and Quin, I was so happy to read that they increased Avery’s feeds, you will be surprised how quickly that number will increase. I remember when they started feeding Brooke in the NICU it was a big event. She also had special nurses who fought over who would care for her when they worked the same shift. NICU nurses and doctors are special angels caring for little angels and they will be inspired by you and Avery as she continues to progress…getting rid of the bili lights was also a memorable day. Brooke and I continue (with friends and family) to pray for you all and Madison and Riley. My dog, Palimali will wear a warrior band too. Keeping up with the blog and lifting you all with daily prayers. Love You!!

  11. Shasta Brown says:

    I don’t know you and you don’t know me. My twins were delivered at 27 weeks and 5 days. My story is a little different though. I am so sorry for your loss of Sienna. It breaks my heart to read it. A very good friend of mine delivered her babies at 19 weeks. They were born alive but for obvious reasons, they only lived for a few hours. It seems that everything your babies had been through, my boys went through as well. I know exactly what you are talking about and the memories I have rushed back when I read your blog. No, I didn’t forget but it isn’t something you want to relive over and over either. I would like 2 bands please. One for me and one for my friend.
    The NICU nurses, doctors, receptionists, and respiratory therapists are all great and we can never thank them enough. See although my twins were born at 27 weeks and 5 days, one of the twins suffered greatly from the TTTS that had happened earlier in the pregnancy. So, it was like he was born at 25 weeks. It was very scary and very hard for a very long time.
    I am so sorry to read about Sienna. I am sure God will watch over her as she watches over her sister and the rest of your family. Her pictures are sweet and thank you for sharing. Hang in there. Increasing the feeds is the best thing ever to happen to Avery, so far.

  12. Please accept my sincere sympathy on the loss of your daughter Sienna. Your story is so touching. My heart aches for your loss, but also rejoices in Avery’s strength. I spent 4 months on strict hospital bedrest, and gave birth to my Boy/Girl twins at 29 weeks gestation. We spent 6 weeks in the NICU, and just got home 4 weeks ago. I realize I am very lucky, and can only partially imagine what you are going through. I just want you to know that I will keep you, your Tiny Warriors, and your whole family in my thoughts and prayers. While in NICU, there were two previous 23 weekers…doing very well I might add. The young boy was about to go home…without monitors or oxygen or anything! I also know a former 23 weeker, who is 5 years old, and about to start kindergarten alongside all of her peers. You see, miracles do happen. I believe in miracles, and I believe in miracles for all of you. It would be my honor to buy some Tiny Warrior bracelets. Please do let me know what I need to do to make it happen. Also, I live in Arlington, VA…if there is ANYTHING I can do to help you, or if any of you need to chat..don’t hesitate to call. God Bless your whole family!
    Nicole M. (USAF)

  13. Gene Roggenkamp says:

    Quintin and Robin, we are so happy to hear of the increase in feeding. Avery is obviously a very strong young lady and carries the stubborn genes from both parents. We are very much looking forward to meeting our newest granddaughter in person. Dad and I would like to have 20 bracelets. Don’t know if you’ve sent them yet, but we have a special surprise for your birthday. Stay strong, love each other lots and send Avery our love and prayers.

  14. Nicolle GS says:

    Robin,
    I have been thinking about you and your family constantly since this began. I can’t believe it has taken me so long to actual write. My heart sank to read of Sienna’s passing. I literally double-over, I am so so sorry for your loss.

    I think everyday of how much you have touched and blessed my own life (and am THANKFUL) Little Avery is so blessed to have such an amazing Mommy (and Daddy!)

    I wanted to make sure that i passed on a message from my great friend Angie who has walked in your shoes. Her son and my daughter are special friends and he is the sweetest angel I have ever met. I am in awe of her will to be a great parent to him and an inspiration to other mommies like you through March of Dimes. I will send her information direct.

    Sending prayers and happy thoughts your way,

    Nicolle

  15. aniss says:

    Quintin and Robin,
    The words never explain the real feelings ,so far you did so good keep supporting the tiny warriors that I’m really proud of and It will be an honor for every one that going to meet her.God bless her and you all

  16. Shari B says:

    My daughter was born at 24 weeks 14 years ago. She had a hole in her heart and a grade 3 brain bleed and had to have 10 blood transfusions. Today she is a happy healthy teenager. She loves sports and plays everything our local Special Olympics offers. She went to her first dance with a boy last week. We were in NICU for 94 days and brought her home on oxygen, an apnea monitor, and gravity gavage feedings. She weighed 2 lbs at birth and came home just over 4 lbs. She is such a joy to us-always happy and excited to try new things. Enjoy your little Avery. She will bless your socks off!

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