01/26/10 Superstar

As if we weren’t already proud enough . . .

Today the Developmental Specialist came to evaluate Juliana. As an extremely premature baby, she has some challenges ahead of her because her “real” age is different than her gestational age. She should still be in the womb right now (38 weeks tomorrow), but instead, she is 3 months old. However, we can’t expect her to be doing what a full-term 3-month-old baby would be doing. So, it’s a tricky thing to analyze. Fortunately, they have specialists who can evaluate her progress and give us recommendations for how to help her progress and catch up to her gestational age by 16 months old, or earlier. The result of her evaluation? She is doing “amazingly well!”

The specialist looked at things like: eye movement and tracking with or without sound, hand, arm, foot, and leg reflexes, muscle tone, social skills (at this point that includes smiling–which she does!!), neck muscles, etc. Her leg and arm muscle tone is a bit tight, which is very common for premature babies, so the specialist gave us some massages and exercises to help her loosen up. However, with everything else she scored at 1-2 months!! This is amazing, since her gestational age is actually -2 weeks right now. Apparently she is a little superstar (but we already knew that). The specialist was very impressed with her and also credited the fact that she has had a lot of parent interaction from day one. We have already noticed that there are not many other parents in the NICU. It’s rather sad. For whatever reasons, the other parents are not able to be there, or else don’t want to be there. Juliana has benefited from our ability to spend hours, every day, with her. Her ability to smile ordinarily would not come in until 2 months after the due date, but she has had a lot of “face time” with us, so she has dramatically improved.

We are fortunate to live in a state where future physical therapy is free through the MD Infants and Toddlers program. We will be referred to our Washington County PT, and they will make house calls to continue working with her for the next 3 years, in addition to the University of MD NICU Follow-Up Program. This continued care should help ensure that she progresses well and catches up quickly to her “real” age. The specialist today said that she sees no reason to think that Juliana won’t continue doing brilliantly. The more we work with her, the more she will improve. We can do little exercises and massages with her every time we change her diaper, and we can work these in to other parts of her day as well. We are so excited to help her on her way. The specialist kept saying how impressive Juliana was. Of course I was beaming; I am so proud of her!

We are also going to begin a fun game called “The Sense of the Week.” Even though the specialist has never recommended it for a baby before the due date, she decided that Juliana is doing so well that she is ready for this exercise. Starting Monday we will get to bring in a different smelling item each day and give Juliana some exposure to the world outside the sterile NICU. Some interesting smells would be things like: perfume, marinara sauce, cinnamon, etc. We have to get approval for anything we bring in (some items might produce allergic reactions, for example, peanut butter), but the point is to have some fun introducing her to new things. Then we can move on to the sense of sound, or to visual stimulation or touch. We just aren’t allowed to work with the sense of taste. Obviously she is only allowed breastmilk. But we are looking forward to seeing her reactions to these new things! Maybe some fun pictures will result. 🙂

In other news, Nana Payne came to visit. She enjoyed holding Juliana today and watching the developmental tests. Juliana weighs 4 lb, 5.5 oz. She is slowly working back into her non-dairy milk feedings. Her hernia surgery is scheduled for early Friday afternoon. She is beautiful and sweet and the light of our lives.

It was a good day.

In repose

24 thoughts on “01/26/10 Superstar

  1. I am so glad to hear that Juliana is doing so well. I am from Nova Scotia, Canada and have been following her story for a couple of months now. I pray that she continues to do well and it is a blessing to see that she has such wonderful parents to help her along her journey. The strength that God has given her has only begun to demonstrate itself. All the best to you as you get to bring her home soon!

  2. WOW! This is GREAT! I was so happy to read this today! I am so happy for you guys and Juliana! You go girl! I am praying that this awesome success continues and I can’t wait to hear her tell this great testimony when she is the valedictorian of her class!

  3. Jason and Jen,

    You definitely have every reason to be proud of your “super star!” Your continued interaction with her will only continue to help her grow and develop. Be sure to take advantage of the Infants and Toddlers program – it sounds like the same program that here in Michigan is called “Early On”. We were involved with that program when we had Zane and the therapists that worked with us were awesome. I have to admit, that it is really sad about the lack of parental involvement that we see in the world today whether it be in the NICU or everyday life. When I worked with our local Early On I was amazed at how few parents were proactive with their children at all. Todd and I would often get comments from our staff about the great job we were doing. I thought that everyone was that way. Also, don’t ever get discouraged if Juliana doesn’t always do things on time – one thing we learned is that every child has their own timetable. You have already learned the biggest lesson with children and that is to love them and cherish them each and every day that you have them. You guys are already awesome parents and Juliana is so very lucky to have you both. All our love and prayers!!

  4. OH. MY. WORD. She is soooo sweet and cute! She is an amazing little girl. I’m so excited that you get to start helping her in fun ways. I miss her already and can’t wait to be back up there in a few weeks. Tell her Auntie Megan sends love… one of her visual things could be a picture of me! hehe! 🙂

  5. You go girl!!! We could definitely tell that she is a superstar! You guys are doing wonderful – keep up the good work. Just keep spending as much time with her as you can. From our experience with our premies – love grows babies. You are all in our thought and prayers continually. God continue to bless you. Lots of love . . .

  6. Oh my, yes! A good day indeed! A good day at the beginning of a blessed life. One day Juliana will realize that she didn’t end up with her parents by random chance. You guys have earned our enduring admiration. She’s on her way, and she wouldn’t be able to do that without you.

    Now . . . setting up a photo of Megan next to her mobile . . . let’s think about that a while longer.

  7. What a wonderful day! I’m sure this is just the first of many moments of your heart bursting with parental pride. We will continue to pray for you and Juliana as you begin the transition into the “real world” with your precious girl!

  8. The lilt in your “voice” makes my heart light! God is so good…and your daughter is such a gift to us all!

  9. That is amazing, Jen! I can’t believe she ranked 1-2m old! You have a reason to be so proud of your little superstar!!! Praying for her surgery goes well and that your little one cones home soon! Have fun with introducing her to smells and sounds outside NICU. Very happy and excited for you all! Julianna is so very lucky to gave such loving and dedicated parents, from day 1!

  10. Little Juliana is so blessed to have parents like you! It’s incredible how much of a difference love and therapeutic touch make in the lives of infants; there are some neat studies about it. I’m so glad to hear that everything’s been going so well, and I will continue to pray for your family 🙂

  11. hahaha. I was going to say what Daddy said, but he beat me to it.

    Awesome news! And a fantastic photo. I can’t WAIT to see her!

  12. This is such wonderful news! Jen and Jason, God has blessed you with love-filled hearts and superb parenting skills and added to that, the prayers of thousands of caring family, friends, and strangers have gone up on her behalf. No wonder she is doing so well. She is God’s special blessing to you. We’ll keep praying for her, especially that the surgery will go well and that she will continue to thrive. What fun it will be to introduce her to the “real” world. Thank you both for the detailed reports. We love to hear all the news about our little treasure.

  13. Yes, she is a superstar! You guys are, too! What a wonderful update. Just made my date that much brighter.

  14. What an amazing little girl you have!! Everything she does will make you SO proud, because you willl never forget how she started her life, and what a blessed little miracle girl she is! Absolutely true, that all the time you’ve spent loving her has made her grow and thrive! I love this picture! She is amazing, and beautiful.:)

  15. God is so good!! When much prayer is added to the equation, big things happen! Love that picture. What a sweetie.

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