Flashback Friday: Just Breathe

http://intentblog.com/sometimes-its-okay-if-only-thing-you-did-today-was-breathe-illustration/http://intentblog.com/sometimes-its-okay-if-only-thing-you-did-today-was-breathe-illustration/

          You know when someone is pregnant and everyone asks, "Are you having a boy or a girl?"  And often the answer is, "It doesn't matter, as long as he or she is healthy."  Yeah, so that phrase has a whole new meaning for me now.  We knew we were having a boy at about 20 weeks, so I never actually said that phrase.  And, if I am ever pregnant again, I won't say it.  Because, really, what would you do if "healthy" doesn't happen or isn't an option?  You do what we did.  You adjust your expectations and watch your little 2 pound baby struggle and fight to breathe for months.  You learn that respiratory status can change in an instant...from collapsed lungs to breathing room air.  You won't recognize  your baby's cry at first, because he was unable to cry with a tube down his throat for 11 days and you hadn't heard it yet.  (While I didn't recognize his cry at first, it now makes me melt, every time.  Unless, of course, it's that fake toddler whine!)  You wait for many months to really see what your son looks like without tubes and tapes covering his tiny face.  You research to find the best "stickies" to keep his nasal cannula on without hurting his tender little cheeks. You watch his  face and chest for any signs of respiratory distress....daily...even 2 years later.  You fight with medical supply companies and pharmaceutical companies to get the equipment and medications your child needs.   You take your 10 month old into the laundry room and cry tears of joy on the day he no longer needs 24-hour O2 support, because before then his 02 tubing only allowed you to take him between the living room and kitchen.   You find yourself explaining that even though your little one is cute and looks "fine," his lungs are NOT so cute or fine and need to be protected.  And you struggle through the depressing effects of isolation during RSV/Flu season while protecting your little one from more lung damage or another hospital stay.  And you are so, so grateful for every breath your child takes.  You also come to the realization that, while watching your baby breathe, it is possible to hold your own mama breath for over 2 years. 
          I had no idea how important lung development was and as I've mentioned before, I assumed preemies were just small and needed to gain weight. This image expresses lung development very well:

Premature birth interrupts the final stages of normal lung development. If lungs were to be represented as an upside-down tree, the lungs of a full-term baby would be fully branched with many leaves. The lungs of a premature baby would look like a simple tree or sapling and would be very rudimentary, with only a few branches and leaves. Since the body counts on those branches to breathe, a simple tree cannot function as well as a fully developed tree. 

– Alan Cohen, MD, FAAP, FCCP
Pediatric Pulmonologist
© 2003 MedImmune, Inc.

Jack needed to do so much more than just gain weight, although that was always a major concern and still is.  I don't remember the doctor's name or even his specialty, but in the days before Jack was delivered, he asked if we knew what we were having (boy or girl)?  As soon I said boy, his face changed from neutral to distressed.  I had no clue why he suddenly seemed more concerned, but quickly learned after Jack was born that little boys, specifically white boys, don't do so well in the lung development area.  There's even an unofficial diagnosis, "wimpy white boy syndrome":  "This is a tendency for white males to develop more slowly and have longer stays in the NICU. This means that their lungs are slower to develop and like all premature babies, they could possibly suffer life long effects from being born prematurely."  (from Weak White Males and the Difference Race Makes in Preemies).
       So, often in the NICU, the typical baby milestones are replaced by "medical milestones" that are often just as celebratory!   For our Flashback Friday, I'll share a few of Jack's respiratory triumphs.

Jack leaving the delivery room on his way to the NICU, already intubated.  (We won't discuss the fact that this picture was taken by my sister, as they paused to show him to family...yet I hadn't seen him!)

Jack stayed intubated, on a regular ventilator and an oscillator, for 11 days.   Being on the vent saved his life, but also damaged his premature lungs even more, contributing to his BPD (Bronchopulmonary Dysplasia).  

Jack on extubation day (11 days old)!  He seemed so exhausted and sick, I didn't believe he would be able to stay off the vent for long.  But, he proved us wrong!

Jack spent over 2 months on Si-Pap and then C-Pap, so his little face and head were covered by tubes, tape, and a mask for a long time.  

Jack had two short (less than 24 hours) trials on Vapotherm (with nasal cannula);  we were so overjoyed to finally see his face!  Unfortunately, he was back on C-Pap for a long while.  

 

Still on C-Pap at 2 months old.

Off C-Pap and on Vapotherm thanks to a round of super steroids.  

Finally, at home on 24-hour 02 support (using a concentrator) until 9.5 months old.  Jack was also attached to a pulse-ox machine to measure his O2 sats (saturations).  He was on two diuretics to keep excess fluid off his lungs and on daily breathing treatments.  During his first 2 winters, he also received 15 shots total of Synagis to protect him from severe RSV.

At 10 months old, no tubes or tape or O2 support.  Just twice daily breathing treatments and limited exposure to give those fragile, scarred lungs the best chance to heal and grow! 

Two years old, running and playing outside in the sun or snow, not letting those premature lungs stop him!

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!

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.

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: