Into The Great Wide Open

Since Avie was born we have been looking at her through plastic. In order to touch her or change her diaper we had to stick our arms through the portholes on the isolette. With the exception of the times we got to hold her, which only really started recently, our view of Baby Avie was always obstructed. That is until this past Friday evening.

The day had gotten off to a hectic start. Robin and I were busy taking care of chores around the house that had been put on hold since the shock of our lives had begun, and before long it was evident that we weren’t going to make it to the hospital for our normal morning visit. Robin called in to let the nurse know that we would be there in the afternoon and the nurse told her that it was no problem. Within an hour we realized that we weren’t even going to make it until the evening.

Our arrival in the evening was much like it usually is. We were greeted by other NICU families and the secretaries. But then we were approached by Maggie, the dear cleaning lady.  Maggie doesn’t speak much English but we have almost always been able to communicate with her.  Her bright smile is almost always there for at least one of our visits each day and she has worn a Tiny Warrior bracelet since they arrived.  When we saw her she smiled and said something that sounded like she was saying that Avie looks like Robin in her bed. Neither of us could quite make out what she was saying until she put it another way, “the baby looks like in a bed.”

Something clicked and the light bulb in my head suddenly illuminated. “Our baby’s in a bed?” I asked excitedly. The nodding of Maggie’s head confirmed that we were now understanding what she had been trying to convey. Robin and I began sprinting down the hallway.

Only a few weeks prior the nurse had told us that Avie might have a hard time with the transition to an open crib due to her potential inability to regulate her own body temperature. But the time had come for the test and if the little one was going to make it she might as well begin the test now. The nurse that was caring for her that evening came over and smiled as Robin and I, tears filling our eyes, took pictures and looked around the crib in the same way that a child who has asked Santa Claus for a new bike still has to examine the one under the tree on Christmas morning before he believes that he really has gotten his wish.  We embraced each other, then the nurse. Then we reached into the crib and each of us put our hands on the little bundle of blankets swaddling our baby girl. Finally we would be able to lean into Avie’s bed to kiss her even when we wouldn’t be able to hold her.

The nurse smiled and told us that Avery’s day nurse had moved her at around 2:00 pm and that she seemed to be tolerating the move well and regulating her temperature fairly well. As an ominous reminder of the possibility that this first attempt might not be successful, just like most other progressions that she had made (CPAP, removal of the replogle, increased feeds, nasal cannula), Avie’s isolette was still sitting only feet away from her spot.  I assured the nurse that I could make sure that she stayed warm enough with my expert swaddling skills.  She laughed and then told us that the day nurse had ensured that she (night nurse) would be set for when we started crying by placing tissues next to Avie’s new bed.

Swaddled in her new crib.

Happy Daddy. (Happy Mommy is dancing as she takes this picture).

Since Friday, Avery has been able to maintain her body temperature and as of right now there seems to be no plan to move her back to the isolette.  I still wonder though, if being in the open crib is for the best.  While I am excited to see the progress, happy to no longer have an obstruction, and feel closer when I am visiting her, I do worry a bit about the noise.  As we’ve explained and most anyone could guess, the NICU can be quite busy and thus can get very loud at times.  To a degree I am concerned with how that will affect her ability to rest, both now and when she comes home.  I worry that with the bustling activity in the room she might be startled and unable to sleep.  And I worry that after she comes home she might have become so used to the activity that it becomes hard for her to sleep in a quiet space.  One thing seems certain now though, it doesn’t seem like Maddie playing in her room will upset Avie’s sleep time too much.

Stretching out in her new space.

Tucked in for the night.

Today, October 26, is Avery’s official three month mark.  With this morning’s visit I received quite a bit of news, good and bad. Because I have always been one that likes to receive the good news first, I shall also share the good news first.

Although the complete results will not be known for another few weeks, Avery’s eyes have responded as well as can be expected to the laser surgery. Her respiration continues to improve with only minor set backs here and there.

And, drums please – Avery officially weighed in at four pounds today. That means that she has gained just shy of three pounds in the past three months.

Our miracle baby is 4 lbs!

Now for the unfortunate small bit of bad news.  The speech therapist visited Avery today and although she seems to have at least part of the triangle of feeding (suck, swallow, and breathe) down, they still don’t think that she is quite ready to begin breast or bottle feeding.  While this news hit me hard, I was reminded by the wonderfully compassionate nurse that Avery still isn’t even supposed to be here yet.  When she’s ready she’ll let us know.

"Don't worry Dad...I'm practicing..."

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20 Responses to Into The Great Wide Open

  1. Rebecca (Hill) McKown says:

    I was just wondering about this precious angel today. I’m happy to read that most news is good. Hopefully the suck,swallow, breathe will be the next thing she conquers.

  2. Debbie Dye says:

    I watch every day for updates on baby Avery. The picture of her sucking her fingers is so precious. Such wonderful news that she is doing so well.

  3. Sarah and Joaquin says:

    Aww…she’s sucking her finger. That’s so cute! We love you, Avery!

  4. Claire says:

    Such a beautiful update!!!!! I can feel your excitement through the words!! I have to say, I smiled when I read about Maggie, the cleaning lady…we had many LONG conversations (of which I’d say I understood about 75-80%) in the pumping room and the hallways of the NICU. She really cares about and looks after the babies…such a sweet lady.

    The feeling of seeing your baby in an open crib for the first time is impossible to describe, believe me, I know, but your post brought all that joy and excitement right back to me. She is just adorable…looks like a real “big” girl now!! As for the noise/stimulation, I worried about that too, and was nervous about moving the boys to the open cribs for the same reason, but I found that they did (as usual) much better than I expected with it and, as with all things in the NICU, it’s an important part of the process towards going home with you!! I use a sound machine in Noah and Ryan’s nursery now and that seems to be soothing for them and helps them sleep long and well…not sure if that’s because they LIKE the noise or if it’s because it drowns out all other noise. Either way, it works!!

    I’m just thrilled for you both, and of course, for Avie!! Keep it up sweetie!!

    Claire Bartick (FCMOM to Noah & Ryan, ex-25 weekers who spent 5 months in the Fairfax NICU this winter/spring)

  5. Nicole Malachowski says:

    Wow! This post brought tears of joy to my heart. She looks wonderful & comfortable in her ‘big girl bed”. I remember the very moment our babies moved to an open crib…the light at the end of the tunnel got a bit brighter. Her ‘Miracle’ hat is so very fitting. She has taught so many people the true meaning of that word. Gosh, your description of life as a NICU family is spot on. You’ve put into words what are felt by so many who’ve walked the halls of a NICU. It’s like reading our own story in your words. You are amazing people…Avery is so lucky to have you. Next time you bend over into her crib to kiss her…please kiss her again from all of us whom she continues to inspire.

  6. Nicole Malachowski says:

    Oh, by the way…. I agree with Claire. Our kids were unaffected by NICU noise…and sleep soundly at night with a sound machine….the sound of a waterfall…..dreamy….

  7. shiraruth says:

    I agree with previous posters….there is a stuffed animal called the Sleep Sheep…..they also make it in a giraffe (which we have), and a whale I think. Anyway, the thing attaches to the side of the crib and plays 4 different white noises. It’s perfect for NICU alums, and our preemie loves his to this day (and he is almost 2)!

    Plus, our preemie slept beautifully from the moment he got home until now. Something about the rhythm of the NICU helps them to start regulating themselves for sleep. I actually had to wake him up for feedings every few hours because he wanted his sleep!

    Glad Avery is doing so well!

  8. Kyle Ward-Dahl says:

    This was the highlight of my morning today. So happy to see that she keeps taking steps and moving forward! She looks great!

  9. Lisa Graves says:

    Such very happy happy news!

  10. Samantha says:

    I just came across your blog today, and I have just spent the last hour reading every post. I have two daughter’s of my own and cannot imagine what you have been going through. I have sat her crying and smiling while reading about your little ones journey. I know that when I go home this evening I will be thinking of them as I hug and kiss my two little girls. I am deeply saddened by your loss of little Sienna, and was saddened again with the news of little Layla (my youngest shares the name). As for little Avery Rose (My daughter Lilyana Rosalee also got the middle name from her grandmother), I will keep her in my prayers. I love that the last few posts have been such great news, and I pray that she will continue to improve and will be at full term and ready to go home ASAP!! Please continue to post updates, as I will be sure to check in and make sure she is doing ok!

  11. Christy Young says:

    It’s so exciting reading about all Avery’s progress. Even though it’s been almost 21 years since we were NICU parents, reading your posts makes it seem like it was just yesterday. They didn’t have all the cool toys they have today, so when Lauren came home from the NICU, I got a radio and turned it to the classical music station and played that when she slept. It worked.

  12. Susan McMurray says:

    So thrilled to read this post and see the pictures. She looks amazing in her crib! What an accomplishment! I am so happy for all of you. Hope things continue to go well. She is a superstar!

    Love from CA

  13. Shasta Brown says:

    That is great to hear all the great news. The feeding thing could possibly take some time. It took a while for the boys to get all of those things down. She is moving along so well though. I know how you feel about wanting to feed her though. Keep eating lots of protein though so she gets the best milk ever. The sound thing was a huge issue for all of my preemies. They were so different in the NICU and then we brought them home and the silence kind of scared them. Getting a sound machine should be okay for her when she comes home. You want her to get sleep but unfortunately with all of the sounds of the NICU, it kind of sets the bar for how she will sleep. I will say that now my boys are 1, they sleep in the same room, and it is very quiet in there now. They don’t like much sound as they sleep, in fact, loud noises startle them now. It could go either way. My other two (who were also preemies) don’t like loud noises as they sleep now.
    It will be so great to have her home though. I wouldn’t worry about the minor stuff (such as a noise machine). 🙂 I am so glad she is doing so well. How are you 2 holding up?

  14. Angel says:

    Quintin and Robin I am so happy and proud of Avery. She continues to amaze me well us. Who would have thought that Avery and Sienna would touch so many people. I pray every single chance I get for sweet Avery to grow, thrive and well just be blessed with love. I then pray for Sienna to keep Avery safe in her arms. I saw a butterfly today and a tear fell from my eye as I felt the presence of my beautiful niece. I stood there in my backyard thinking to myself what a beautiful butterfly. For about two minutes this butterfly danced in the sky and flew around peacefully. I named it Sienna as I watched fly away. Great pictures of sweet Avery. When I get home Saturday I am going to send you and Robin the dedication pictures of my walk for team Avery and Sienna

  15. I love all the pictures – she looks great! And congrats on 4 pounds! The next ones will come faster, I know it. I’m so happy she is tolerating the big girl bed, and before you know it she will be feeding by bottle and/or breast.

    I’m so looking forward to playdates come spring or summer where our little miracles can get to know each other! Keep on keeping on, Avie!

  16. Nancy says:

    I keep reading these posts over and over because it makes me feel closer to you guys. Then I sit here and cry and the kids ask “Mom, What is wrong with you?” My heart aches for you both but I am also so thrilled with Avery’s progress…I can’t wait to see her in person!! Please kiss her from her “Aunt Nan” and Cole wants to know when he can come for a visit. (Oh, and the “feet” photo…loved it! I may just even frame it!)
    Love you guys!!

  17. Shirley says:

    Little and big miracles every day. I am so happy to read the latest news. She is so adorable wrapped up in her little bed. Thank you for your updates, they are inspirational, as are all of you. Blessings… S

  18. Diane Sheridan says:

    I’ve been keeping up with the blog but by the time I’m finished reading the latest entry I am overcome with emotions (mostly happy feelings) and have tears streaming down my face. I am thrilled to read about Baby Avie’s progress and see all of her latest photographs. Four pounds is great and being out of the isolette and in her own crib is such a special blessing! Quin and Robin, don’t worry about the noise, the will adapt and enjoy the sounds around her in the NICU. Those adaptations will also happen when she gets home, you will be surprised and happy when your little “angel warrior” sleeps when it’s noisy and quiet. I remember those days with Brooke like they were yesterday (but she is 30 yrs. old). Avery Rose is beautiful, and I have been sharing her photos with teacher friends of mine and they continue to pray for you all and they are thrilled at her progress.

  19. Love the precious pics! Don’t worry about the noise. Babies are resilient and adaptable and Avery is a champ at this! When Bradon came home from the NICU, noise never bothered him and he slept well everywhere. I second the sound machine for night time. You can get one at Target that also has a mini projector on it for around $20. While we don’t use the sound machine anymore, we still use the projector with a timer set for a few minutes when Bradon goes to sleep.

  20. Susan Lennon says:

    Beautiful….~just beautiful news~

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