Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Wednesday, January 30, 2013

Daily Memories

I had planned to write a post about why I blog and why I focus on prematurity, but I happened upon another mom’s blog where she was getting SLAMMED for being honest and real about her little girl and her unique needs.  She wasn’t complaining about what she, as a mother, had to deal with or saying that it was too much.    She was just being truthful about the difficulties that they have faced and may face in the future.  She was told to be just be happy, quit complaining, and so on (and those were some of the polite comments).  They asked, "What will your daughter think when she reads this some day?"  I sure hope that when Jack reads this blog some day, he will realize how blessed we are to be his parents and how his mommy advocated for him and for all babies born premature.  It made me think about what I normally write about on the blog and how that might be perceived by my readers.  I don’t get a lot of comments, as this mom did, so I can’t really speculate about what readers (are you out there??) may feel or think.  (Although some of you do comment on Facebook…thanks for that!).  But my assumption is that everyone knows I think Jack is absolutely amazing!  Wonderful!  Happy!  Funny!  Smart!  Everything he does is a victory for him and to me!  I could go on and on about how awesome I think he is.  But, I often don’t do that…because I would probably have to blog for hours every day!  I try to keep track of some of the things he says or does with a file called “Daily Memories” and thought I’d share.  I also take many, many pictures of him daily...his Great Aunt Jul says he’s “the most photographed kid in the world.”

For this week, just a little glimpse of what life is like with our boy.  (Stay tuned to next week when I reveal my “Why?”). 

  • Today Jack put puppy on his head and said “hat. " He then found my bra (we were folding laundry) and put it on his head too!    
  • Took Jack to Daniel’s Den this morning…made friends with a girl named Olivia.  Said “Hi” to everyone!  Should be napping right now, but is instead shouting out words that he knows “Blue, Purple, Open.”  Finally napped after 2 hours of talking. 
Spent Christmas Eve as a REAL Elf on the Shelf.
  • After SPLASH, I picked up a 4pc chicken McNugget Happy Meal on the off chance that Jack would eat it….he ate 1 nugget, many fries and 1 apple slice.
  • Jack had PT with Miss Mari at Daniel’s Den.  He made her go down the twisty, tube slide 3 times (with him)!  He brought the friend over to us and said, “Mommy” and then “Mari” as if he was making introductions!
Painting with a paintbrush.  He ended up putting all the crayons in the water cup!
  • Told Jack to say, “Come on Daddy” when it was time for bed.  Jack, instead, said, “Now.”
  • Wiped his own weiner during diaper change! 
  • Jack was climbing on the table and Jeff said, “How many times have your mother and I told you not to climb up there?”  Jack replied, “8!”
  • Jack was playing with his “big giraffe” and “baby giraffe.”  He crouched down and “sat” on the baby giraffe and shouted “RIDE.”
  • Woke Jack up from his nap to find him naked (no clothes, no diaper) and 2 piles of poop!  We talked about how he needs to keep his diaper ON during naps.  Straight to the bath! (This has not happened again.)
  • When he sees something he likes in a toy catalog, he “pinches” it with his fingers and grunts…hoping to get it out of the book!
  • Yesterday, Jack followed our cousin into her bedroom when she was changing out of her pajamas.  When she took her pants off, he said “butt.”  When she put her new pants on, he said, “Bye, Bye, Butt.”  
Took his first bites of a whole apple.  Loved it!
  • Today, Jack pulled the vacuum cleaner to the floor and rode on it like a riding toy.  Guess I don’t vacuum enough. 
  • The other day, he was “reading” with Jeff and said “Flower” then counted the 4 flowers and sniffed them too!  He has been saying, “Ready, set GO!” or “I-2-3 GO!” too. 
  • Jack worked his way on to the couch, looked across the room at Jeff…and then put his hands behind his head, just like Daddy.  So cute!
  • Jack asked to go potty, then shut the door and said, “Bye Bye Mommy.”  I thought I’d give him some privacy and got distracted by dishes.  Quietly, he played in the puddle that was his pee! 
Jack shouted "Big A" when we were playing in the neighbors yard :)

  • So, when Jeff and Jack play, Jeff often gives Jack "the claw" (from Jim Carrey in Liar, Liar). Tonight, Jack did it to Jeff...but called it, "Baby Claw."
  • Today at SPLASH, Jack was given white pom pom snowballs to glue on his snow sky scene.  Instead, he wanted to pile them up and make a snowman!
  • When I went to get Jack out of his crib today, he grabbed his hiney and said, “I poot (pooped).”  He didn’t.  Just pee. 
  • I told Jeff to take off his pants, because they had rock “dust” on them (not good for Jack’s lungs).  Jack immediately started to take off his own pants…and then proceeded to attempt to remove mine!  Apparently he thought it was a family "no pants" kind of night!
  • Tried my beef at dinner.  Is now “grilling” the pieces that fell on the floor on his play grill.  
I asked Jack to say "chip" and this is the response I got!

Friday, January 25, 2013

Flashback Friday: "Afraid to Love"

In my last post, I mentioned that my experience with holding Jack for the first time was not the bonding moment I thought it would be.  I didn’t feel peace and comfort; I felt afraid and anxious.  In fact, the first week or two of Jack’s life, I’m pretty sure I didn’t feel what a mother is “supposed” to feel when her child is born.  
Holding Jack for the first time, 10 days after his early arrival.
 I was so, so grateful to read Kasey Matthews’ book, Preemie, because I realized that I wasn’t the only parent of a premature baby to have unexpected emotions.  But, then again, none of our experience with pregnancy, childbirth or parenting has been what I expected.  I do know that I often felt intense guilt for not feeling what was expected.  I've realized that those "wrong" feelings were just a way to protect myself from even more heart ache.  (We were actually told at our 10 week ultrasound that the baby had a 50/50 chance of surviving, because the gestational sac was measuring too small.  Let's just say, I had been preparing myself for loss from the start.)  I've also discovered, as Jack grows (and especially right after his 1st birthday), the feelings that I was "supposed" to feel then have hit me even harder and are more raw than I ever imagined, and probably couldn't have handled at the time.  I feel more devastated about the circumstances of his birth NOW, than I did as they happened.  I'm sure there's some psychology behind that, I just don't know the correct terminology.  There’s a song that I used at the beginning of Jack’s video (2 pounds to 2 year).  It’s heartbreaking and not completely warm and fuzzy, and I debated using it because I didn’t want anyone to think that Jack makes me sad.  He doesn't, but what happened to him does.  His early arrival and fight for survival do still make my heart ache and this song expresses it so well. 

Afraid to love
Something that could break
Could I move on
If you were torn away?
And I'm so close to what I can't control
I can't give you half my heart
And pray He makes you whole
(All of Me – Matt Hammitt)

 Rest assured, this little boy has my whole heart now.

Monday, January 21, 2013

Jack in the Box Revisited

Jack in the Box - his first "bed," an isolette
When I thought about mothering a newborn, I pictured baths and bottles, cuddles and diapers, and sleepy sighs...all at home.  Of course, I also assumed that I would be able to hold my child whenever I wished. Instead, I waited over 24 hours to see him and 11 days to hold him for the first time.  And after that, for only a few hours a day, if at all, for the first few months of his little life...the time when he should be held the most, by his mommy.  (I'm sure I could write an entire blog post on that topic...but not today.)     

When you are in the NICU and have to watch your tiny baby fight for his life, those simple moments may still happen, just in a new environment.  I just met a new NICU mom and we talked about all the little, but important moments -- that first bottle, the first bath (even if it was in a pink emesis basin for Jack), reaching three pounds or four, wearing clothes for the first time.  Those moments that moms don't want to miss, but might for physical or emotional reasons.  Physically, they aren't living in the same "home" as their child or emotionally, because they can't see past the fear and anxiety inherent in the NICU experience.   I missed many moments for both reasons.  Jack was so fragile...I was too scared to change his diaper or give him a bath, at first.  And even that long awaited moment of holding him for the first time was fraught with anxiety.  My shoulders and back, tense with fear.  Fear of hurting him, fear of loving someone that I might lose.   I was physically there for that moment, but emotionally I was lost in fear. 

Jack in his NICU crib
Jack's first bed was an isolette, so he earned the "Jack in the Box" nickname pretty quickly.  When Jack graduated to a real crib, I wasn't there for that important moment.  It made my heart ache.  Especially because I walked by his nursery at home every day, with an empty crib in the center of the room.  That made my heart break.
The empty crib...waiting to be filled by our little boy. 

 Looking back, putting up his crib while he was still in the NICU was doubly symbolic.  It was symbolic of the faith we had in a baby that would eventually come home, but it also was a daily reminder of the fact that our little boy was not at home where he belonged.  Heart ache and heart break that lessens, but is never forgotten. 
Now, his crib is filled with blankies and Wubbanubs and burpies, and a sleeping or chatty little boy, depending on the day.  And Jack's room is my favorite place in our home.  It's filled with all his little boy things, filled with happiness, love and laughter.  I spend time in it, even without Jack, and I feel at peace and I feel "there"...emotionally and physically.  While I can't help but occasionally recall his first months in that plastic box or being separated from him for so long, Jack seems to enjoy reliving those days by attempting to get into any box or bucket or basket he can find.  Check it out:


Thursday, January 17, 2013

Flashback Friday: "FEED ME"

I couldn’t decide whether to write this post about flu shots or feeding, because both are high-priority in the land of prematurity.  I just read an article with tips to protect yourself from the flu and it basically said, “Wash your hands,” “Stay away from sick people” and “Get a flu shot.”  As a parent of a medically-compromised kiddo, I guess I live in a perpetual flu season, because we do all those things, obsessively almost…and have since Jack was born with damaged, undeveloped lungs.  But, I felt the need to talk about feeding on this Flashback Friday.  A few days ago, I found a document I created to explain how to feed Jack.  Simple, right?  Think again.  It involved over 25 steps (Feeding Jack).  I’m also part of a few online preemie parent support groups.  Not a day goes by that at least one parent is looking for advice or understanding about the feeding issues their preemie might have.  While Jack’s lung health has always been a major issue for us, closely connected to that is his weight and growth because both contribute to his lung health. We left the NICU, with a little guy who took maybe 40% of his feedings by mouth, a feeding tube and pump and no real plan except an appointment at a feeding clinic.  I always say, "It felt like we were dropped off a cliff with no one to catch us."  (And we were probably afraid for someone to catch us, because they might have germs and make Jack sick!)  We were not prepared for the feeding struggles ahead.  

Jack's first feeding pump in the NICU

Suffice it to say, the feeding clinic (see old blog post:  Feeding Clinic a Bust!) was not the answer we thought it would be and Jack continued with the tube feedings until he was around 8 months old.   Some babies leave the NICU with a surgically placed feeding tube (Jack’s was temporary and replaced by us weekly - don't get me started on how awful it was to force a tube down his nose into his stomach.  I was afraid he'd never forgive me.  He has.  I think.).  That surgical option was suddenly offered to us right before discharge and I said no (Thanks for the advice, Aunt Jul!).  At that point, it wasn't medically necessary and was more for convenience.  I wanted to feed him as naturally as possible, even with a tube, so we opted to try the temporary NG tube for as long as possible.    Whatever the nature of the tube, I had a very, very difficult time accepting that I couldn’t feed Jack naturally.  It was such a disheartening part of this journey and I’m sure that Jack felt my desperation at every feeding.  Nourishing your child is just one of those things you expect to be able to do.  Add it to one of the many expectations we threw out when Jack arrived early.   Jack was very slow to gain weight; his lung disease made it so that he burned extra calories just breathing, so eating on his own without the tube/pump was really futile.  Nourishment or energy gained from the bottle was depleted just by drinking.  We wanted him to eat “normally,” but we didn’t want to compromise his lungs.  We had a few “He’ll eat when he’s hungry” comments, and I naively believed that to be true.  But, his early arrival suspended some of the typically developing reflexes…he did not show hunger and most likely would have gone days without eating if we let him.  We did not…we actually fed him every 3-4 hours for those first 8-10 months, even waking him at night when he’d rather be sleeping.    I still struggle with the fact that his developing brain was not getting enough rest...but nutrition won out. 
Jack exhausted after drinking a whole bottle (2-3oz) on his own.  He usually didn't eat from the bottle for 2-3 feedings after finishing a whole bottle...hard work for out little guy

We took solid foods slowly; Jack enjoyed purees and baby oatmeal.  We tried not to push and restarted baby food more than once and I have to say I was completely shocked that he didn’t show the signs of oral aversions that I feared for him and that so many preemies develop (and understandably so…after all the trauma that has occurred in or around their mouths from birth).  There is even a diagnosis called Post-Traumatic Feeding disorder (   We learned a lot from other parents and had an OT (thanks, Miss Lisa!) who was really helpful.  I learned that little mouths like Jack's want texture, but not mixed textures (Stage 3).  I learned not to scrape the leftover food from his chin...and to make sure he had a lot of positive associations with his mouth.  I learned that some baby's skip baby foods and go right to table food...and so much more.  I also learned that feeding issues aren't just for preemies. 

Jack ate the same solid foods for months and months…shredded cheese, mac & cheese, peas, pancakes…and just recently, after turning two, is starting to branch out into real food (pizza, chicken, edamame, sausage) and actually showing hunger and asking to EAT!   Even though I consider him a good eater at this point, he is still diagnosed as “Failure to Thrive”  ( and is seen by a nutritionist every few months.  Basically, he doesn’t weigh what he should for his age, even when they take his VLBW (Very Low Birth Weight) into account.  Getting that diagnosis, well, they might as well have diagnosed me, “Failure as a Mother.”  Feeding your child, a requirement of motherhood...staying pregnant for 40 weeks, another requirement…failed…failed…failed.  That’s how I felt.  I read other moms’ blogs, posts, comments on FB…so many of us struggle with feeding our children and I’m sure none of us ever thought it would be so hard or so much harder to get the resources, appointments and therapies necessary to help our little ones say, “Feed Me,” and actually mean it.  But, I do find comfort in knowing that I'm not the only one.   

There are things we do to ensure Jack gets as much nutrition and high calorie food as possible…things I probably didn’t think I’d do before he was born.  We add full-fat butter and cheeses, he gets McDonald's once a week (and I often take pictures as he eats because I'm so amazed and relieved), he drinks whole milk with Carnation Breakfast Essentials added for extra calories, he still doesn’t use utensils, well, because finger foods = more calories in, we still give a night-time bottle with high-calorie formula, he has ice cream for a snack before bed most nights…and yes, he often eats in front of the TV, for a distracted toddler can be fed more than he even realizes.  Oh, and yep, we sometimes hold the spoon and feed him too!  
One of those chicken McNugget pics!
I’m not sure how many preemie moms actually read this blog, but if you are out there…leave a comment and let us know what has helped you with feeding and nutrition.  Or if you have questions or concerns, let me know.  I could have written forever about how we managed through the last two years of feeding Jack and I know there are others that struggle even more.  It seems so silly to even type that statement, but it's true...feeding has been a struggle and something to "manage," but I do know that for Jack's sake, we are much better at hiding our fears and frustrations that surround his food.  Perhaps that's why he looks like this when we have pizza!  But, I have to be honest...when it's possible for someone else to serve Jack a meal, I head for the door!