Miss Lisa: Jack's Biggest Cheerleader

     Jack’s early arrival puts him at risk for developmental and cognitive delays.  In the NICU, he began receiving therapies (OT, PT & Music) as soon as he was stable to help limit the impact prematurity would have on his development.  One of the things I loved about the therapists in the NICU was that they helped us comfort Jack and respond to his cues, when there was little else we could do for him.  His OT, especially, offered reassurance about Jack’s future, taught me infant massage and gave me some really great advice as he was discharged, “Just play with him!”  I know now that she was actually giving me real OT advice, for a baby’s “occupation” is play, yet it helped to think that we’d be able to do typical things with Jack at home, between all the tube feedings and medication administrations.  She definitely set the stage for our positive experience with Jack's journey through Occupational Therapy.   

     Jack was referred to Early Intervention in the NICU, so we knew that he would most likely be receiving more therapy at home.  His first of many, many evaluations showed delays in all areas (which was expected) and along came Miss Lisa in January 2011, just 2 months after Jack was discharged.  Here’s what we had to say about Jack’s first session:  “He had his first OT session with Miss Lisa last week and he loved her.  She had him laughing so hard, which made me laugh so much my cheeks hurt :)  He will have OT once a week for as long as he needs it.  The EI intervention program is great!” (February, 2011)

Jack with Miss Lisa during one of their very first playdates. 

     And we’ve been laughing ever since.   Miss Lisa came along at a time when I was my most fragile as a new mom.  I was overwhelmed by all the special care that Jack needed and beyond scared that he would get sick and end up back in the hospital.  I’ve mentioned many times that we limited his exposure to people (and germs), but Miss Lisa was one person we allowed in our home despite our fears.  I knew how essential it was for him to have the best chance at developing as he should and she taught me how to help Jack be the best Jack he could be.   I knew she was the right therapist for Jack and our family, especially when she takes her shoes off and puts them outside, deeming them too dirty for Jack to touch!  She listened to me cry about Jack’s feeding issues and planned to celebrate his eating success with a Happy Meal date someday.  When I was so afraid that Jack might “break” or might pull out his NG tube, she encouraged us to treat him like a normal baby; a message that took awhile to sink in, but it did.  For the past two years, she has offered support and a listening ear and has been Jack’s biggest cheerleader and a sounding board for his mommy!   She did as much for Jack as she did for me, and we can’t thank her enough.  I am most definitely a better parent because of her influence.   

Jack making some standing progress, with support from Miss Lisa, of course. 

     I know she is a really effective OT, based on all the awesome progress Jack has made (and I have made as his momma).  But what makes her that way is that her sessions don’t seem like a session; they are therapy disguised as a play-date for Jack.  She offers very simple solutions and advice that make a huge impact on Jack’s development – from not scraping his face with a spoon so as not to contribute to oral aversions to placing a bag of sugar on his push toy to give him more leverage for walking.  There’s “marching in the band” and stepping on the couch cushions.  She helped Jack develop into a master of “container play” and now he is always putting stuff away!  He loves his time with Miss Lisa.  And I think it’s safe to say she feels the same…I have proof in the tears she shed when he sang his ABCs and the excitement she displayed when he sat up on his own, along with the many other milestones met with her support!

Working on some fine-motor skills. 

     The great thing about Early Intervention and the therapies it offers is the support and “eyes” on your child.  It’s also the most disheartening aspect…having your child and your parenting under such scrutiny and knowing that your child has delays.  A large part of me just wanted Jack to be able to do things without so much help.  Yet, I have always been extremely grateful for all the therapies and support offered through Early Intervention.  And, since the help comes in the form of Miss Lisa, we couldn’t be more blessed.   Sadly, as Jack approaches age 3, we will need to transition to the local intermediate unit for his services and say goodbye to Miss Lisa (professionally, but hopefully not personally).  To say she will be missed is an understatement and I think we are both in denial about this upcoming transition.  

Happy Meal Date

Happy Occupational Therapy Month! 

P.S.  After Jack’s first year with Miss Lisa, we made her a photo book of all of the progress he made with her help.

Click here to view this photo book larger

The new way to make a photo album: photo books by Shutterfly.

Flashback Friday: Announcement. Announcement. ANNOUNCEMENT!

These days, I’ll do almost anything that helps me heal or make peace with my ultimately life-threatening pregnancy and Jack’s early arrival (and all that it entails).  What I’m doing today may seem trivial to some, but it is triumphant for me.  When your little one is born early or sick, there are certain typical newborn and new parent milestones that are lost and grieved in the struggle for survival and sanity.  Some of those milestones are more painfully grieved, like not taking baby home days after birth.  Others, may not be cause for trauma, but are still a loss for many.  Some of those losses are more easily healed than others.  Today, this one is easy.  For me, one of the less painful, yet still important missed milestones was sending an official birth announcement for Jack.  Heck, I don't even know if Jack's birth was in the newspaper, one of the few sections of the Sunday news that I religiously read.  Between collapsed lungs and possible heart surgery for our 2-pound babe, some milestones just weren’t going to be checked off on my list, and I’m a notorious list maker and check-off-er!  I've always loved stories and books and photos, and I had imagined all those cute little newborn photo shoots at home and at a professional studio.  I also imagined filling in Jack's baby book religiously, which became difficult since his first year didn't exactly match up with those fill-in-the-blank books.  Since Jack was in the NICU, it didn't occur to me to have a professional photographer document that time for us, so I have some very unprofessional photos from that stay...probably because I was more focused on his survival than his story, at the time.   Even after he came home, fragile lungs and on O2 with an NG tube, I was too afraid to expose him to a studio.  Since we severely limited visitors, there was no way a photographer was coming into our home either.  So Jack’s first year was well-documented…with my smart phone camera!   I've been creating photo books and developing this blog, to make sure his story is not forgotten (as if!) and we’ve had a few professional photo shoots as well after he turned one.  But, that birth announcement…well, 2 years later is too late, right?  Nope.  Jack may have arrived early, but for me, it’s never too late to proudly announce his birth.  This announcement may be late, but it's free and a limited edition of 5 in the series.  (Yes, recently, I received a random coupon from Shutterfly for 5 free cards.)   

Here it is:  Jack Ryan’s Official Birth Announcement.  

Modern Aqua Birth Announcement

Create beautiful birth announcements at Shutterfly.com.

View the entire collection of cards.

Busy Boy

Waving and saying, "Hello sun!"

Jack is a busy boy these days!  Well, he's always been busy, but now he seems to have more of a purpose and focus to that busyness.  If he's not washing dishes, then he's playing with his trucks or requesting specific episodes of "Little Einsteins" to watch.  Or he's shouting, "Kindle, Kindle!"  Yep, his vocabulary is expanding every day.  Just today, Jack played with play-doh for a good 30 minutes, played in the tub for even longer, went for a short walk, got his haircut, and managed to have 3 meals too (breakfast, snack, and lunch).  It's no wonder this little guy takes a 3 hour nap every day.  Here's a glimpse into his daily doings. 

First haircut at the salon.  Not too sure about it. 

Pre-Easter Egg Hunter

Making pizza with mommy.

Fixing his truck with a scoobaba (or screwdriver).

Chips at Aunt Becky's after a walk.

Riding the motorcycle at the CMN Miracle Party.

Loving the snow!  (Even if it is in March.)

Making faces at Stauffer's garden center.

After a Thin Mint.

I think Jack is making his case for a pet fish.

Washing Dishes!!!

Just a little bite of broccoli.

Flashback Friday: Left Behind

Look at that little face.  Can you imagine leaving him for even one day?  Can you imagine having no choice but to leave him every day for four months, without his mommy and daddy, when he was at his most fragile?   Because his home was not your home?  Because he didn’t belong to you yet?  We did that for 112 days and it still hurts my heart tremendously if I allow myself to think about it too long.  I actually have to limit myself from looking at some of Jack’s NICU pictures, because I know if I do, I’ll go down an emotional road that is sometimes better off not traveled.   I start to think about the day when another parent, heartlessly mentioned, “You know he cries a lot when you aren’t here.”  I was there sometimes 8-12 hours a day, but it was never enough.   I almost always left when he was asleep, because I never wanted him to see me walk away.  And I often didn’t visit at night, because there was something inherently wrong with leaving him when it was dark outside.   

Last night, I stayed at the hospital until 9PM (my second visit of the day), because he was just so alert and wanting to see what's going on in the NICU. I have a lot of trouble leaving him if he's awake; I definitely don't want him to see me leave so I always wait until he's asleep. (10.15.10 CarePages entry)

Or I start to feel the exact same desperation as I did the day I left the hospital, for the 100^th time, without my little boy, and barely made it ¼ mile down the road before I broke down in a grocery store parking lot (me, not my car).  The feelings involved with leaving your baby, and not by choice, are difficult to describe.  It was hard on me, hard on Jeff, and I’m unfortunately imagining, hard on Jack.  Instead of it getting easier every day, it just got harder and harder to leave him behind.     

Jack is still doing very well. He's got his quiet alert moments when we play, talk, and listen to stories. He's got his fussy moments when he just wants to be held. And he's adorable as always, which makes the fussy moments that much more enjoyable. What is not so enjoyable is knowing that I'm not there to calm him or hold him during all his moments. I know a lot of people think it will be stressful for him to be home, but it's got to be better than leaving him every day for the past 85 days! (CarePages entry 11.3.10)

I worry about what it did to his sense of security*.  At a time when he was supposed to be learning about the comfort and care a mother provides, he was learning about needle sticks and tubes inserted into his mouth or nose and pain.  His nurses were great, but they also had other babies.  So there were many times that he cried and wasn’t held and comforted as he would have been by me.  When he should have been developing a sense of safety and security, he was “alone” without his parents.  No matter how wonderful & loving the nurses may have been, they were not me and not Jeff...and I will forever be devastated by this fact.   Even though I know Jack and I have an amazing bond now, there will always be a small part of me that worries what those 4 months did to him and a large part of me that will spend the rest  of his life making up for it.  Jack rarely calls for me when he is in his crib.  Is it because he thinks I won’t come, like when he was in the NICU?  Has he learned that mommy and daddy WON’T always be there for him?  He's not much of a cuddler or hugger, but he does lean on me.  Is that because he wasn't held and hugged enough in those early days?  He is in a stage now where he seeks me out, just to make sure I’m still there and I always say, “I’m right here, buddy.”  And he repeats it, "Right here, bubby" and somehow, it makes my heart sing and suffer at the same time.  Because there was a time, when I wasn’t there.  And I should have been. 

 Jack's doing well...but his mommy is losing it! I have to say that I can hardly stand to go the hospital and once I'm there, I hate to leave. I'm just about sick every time I have to leave Jack and it gets worse each time. (10.23.10 CarePages entry)

* "Bonding is the intense attachment that develops between parents and their baby. It makes parents want to shower their baby with love and affection and to protect and nourish their little one. Bonding gets parents up in the middle of the night to feed their hungry baby and makes them attentive to the baby's wide range of cries.
Scientists are still learning a lot about bonding. They know that the strong ties between parents and their child provide the baby's first model for intimate relationships and foster a sense of security and positive self-esteem. And parents' responsiveness to an infant's signals can affect the child's social and cognitive development."

http://kidshealth.org/parent/pregnancy_newborn/communicating/bonding.html#