Jack is TWO!

There are so many thoughts and things to say about Jack turning TWO!  I'm working on organizing those thoughts, but for now, enjoy this video of Jack's life the past 2 years:  (Click on the words, "2 pounds to 2 years").

2 pounds to 2 years

Happy 2nd Birthday, Jack Ryan!

After Jack's 1st Birthday: Our Preemie Story

 (Note of caution:  I was definitely in a dark place emotionally after Jack's 1st Birthday, so this may seem a little raw and/or bitter.  That's okay...because that's exactly how I felt then.  I can say, however, that those feelings of rawness & bitterness are much less common in my heart these days as we approach Jack's 2nd birthday

 Thanks to Keeping Up With the Kimmels for allowing us to share our story:
 http://www.kimmeldoubletrouble.blogspot.com

       

          Telling our preemie story is difficult; it’s not a story.  It’s our life.  We are still in the middle of our preemie story and I often wonder if we’ll ever see the “end.”  But I do know that I still often feel like our little guy is “on loan” to us and if we can just keep him healthy for the next year or so, then we get to keep him.  I know this sounds absolutely ridiculous to most parents…unless you are part of the club that no one really wants to join. 

          We celebrated Jack’s first birthday (9 months adjusted – preemie moms, you know why we write this clarification) just a few weeks ago, and one of our favorite NICU nurses was there to celebrate with us.  We were talking about the good old NICU days (read this in a sarcastic tone please) and I mentioned to her for only the second time to anyone that I thought every day that he would die.  She looked at me with such shock and awe…why would I think that?  Sorry, what else am I supposed to think when he was born and I didn’t see him for over 24 hours (not even a glimpse after my emergency c-section) and since that day he was not breathing on his own?  Or maybe it was the day of my discharge when I watched the respiratory therapist “bag” our little one as doctors and nurses hovered around his isolette.  Or, I don’t know, maybe it was the day that I was casually kangarooing and one of our other favorite nurses hastily ripped him out of my arms…at that point I must have blocked out the alarms, because I didn’t realize that he was turning blue and, yet again, not breathing.  Thus is the life of a preemie mom in the NICU.  It is not normal and it will never be.  I have an aunt who works in the medical field (pediatrics) and she was so very helpful during this time if I had medical questions.  But she always said that in 6 months, this NICU experience will be a distant memory.  As if.  It has been over a year since Jack was born and I cannot look at him without what seems like all of the 112 days of his NICU stay flashing through my mind.  It is a kind of trauma that will never be forgotten.  I used to get hurt/upset/angry/bitter at people and their comments…Oh, he doesn’t look like a preemie anymore?  Yeah, well that’s because you can’t see his lungs!  Why do those doctors care so much about his weight?  He’ll eat when he’s hungry.  Again, those doctors know what his lungs look like and are concerned for his health.  Yeah, I cringed at those comments and many more.  But I know now that everyone was just trying to be helpful and make us feel better (even though, at times, some comments had the opposite effect).  But my goal now is to educate.  I’ll be the first to admit that I knew nothing about prematurity or infants who are sick at birth.  I assumed preemies were smaller and just needed to gain weight.  So when people comment, I assume that they are just lucky enough to not have experienced a story like ours.  Here it is: 

          I was very cautious during our pregnancy – no hot dogs, lunch meats, caffeine, etc.  We had “help” getting pregnant and the early months were fraught with issues and anxiety.  But, by my 6^th month things calmed down.  As I just stepped foot into the third trimester, I had a headache that just would not go away.  It developed into nausea and chills by the 7^th day and I called my doctor’s office, but they could not fit me in until Monday.  I had sent my husband on his mountain trip, thinking I just had a stomach virus or something.  But later that evening, I knew I needed to head to the hospital.    Yep, my BP was sky-high (200/110 something).  I casually mentioned to the midwife that there must be something wrong with their BP cuff.  And she kindly said, “No honey, there is something wrong with you.”  Fast forward 4 days, after being transferred to a hospital with a Level 111 NICU and being bounced back & forth from labor and delivery to maternity.  When my BP would just not stabilize, it was time to deliver.  A nurse commented about how calm I was (could have been the mag), but I really didn’t have any other choice (or did I) and how was I to know that we would end up experiencing a 112 day stay in the NICU?  Knowing what I do now, I would have begged and pleaded for them to wait another day…but, I also didn’t want to die.  I was pretty well drugged before the c-section, but my stepsister recently reminded me of the conversation about possibly not being able to save both of us (me and my son).  Apparently I wanted a say in the matter…but I sure don’t remember that conversation.  I have an inkling that there are a few events and conversations that I don’t recall from the week before and weeks after Jack’s birth. 

          Jack was born on 8/10/10 at 10:12 pm at 28 5/7 weeks.  He weighed 2lbs 1oz and was 12 inches long (the size of a ruler).  I had spent the week before his birth with a headache that would not go away.  By Saturday August 7, the headache was joined by nausea and chills.  My doctor’s office was unable to see me that day so I thought I could wait until Monday.  However, by Saturday evening I had called my mom to take me to the hospital because I knew the way I was feeling was not right.  Little did I know that I would be a mother just a few days later.  My blood pressure was extremely high and there was talk of delivering immediately.  At that point, I had no idea what prematurity would be like for a baby, but I knew that I did not want to die.  I was transferred to a hospital with a level III NICU and was bounced between L&D and the maternity ward until Tuesday (depending on how high or low my BP was).  Suddenly on Tuesday evening, August 10^th,  I was told that it was time to deliver.  Because I was on magnesium sulfate, I was surprisingly calm, according to my nurses.  Of course, that is because I had no idea what was in store for my little boy.  I just knew that I wanted to feel better.  I didn’t see Jack until 24 hours later.  He was much tinier than my husband and family had described.  I just couldn’t fathom what our life would be like now. 

          Jack spent 112 days in the NICU.  So many have asked me how the experience was or how did I feel about the NICU?  I have one word:  AWFUL.  No matter how wonderful the nurses and doctors were (and they are awesome), the experience was an awful one and I never, never want to experience it again.  The emotional intensity, the fear, the uncertainty…it cannot be understood by anyone other than those who have had their own NICU experience.  And even then, no NICU experience is exactly the same.  And it sure isn’t a “rollercoaster” as so many describe it.  It was more of a nightmare.  Watching a respiratory therapist bag my son on the day I was discharged was awful.  Having Jack ripped from my arms as we “kangarooed” was awful.  But he wasn’t breathing and needed to be saved.  Leaving him every day was awful.  Wondering every day if he would die was awful.  Trying to function outside the NICU was impossible and, you got it, awful.  Trying to explain to people why he couldn’t come home was awful. And don’t get me started on still trying to explain to people why he shouldn’t be exposed to respiratory viruses.  It’s awful.  But, it has allowed me to channel my teacher energies into educating everyone and anyone about prematurity.  Jack was on the ventilator (oscillating and conventional) for 11 days and then on Si-PAP or C-PAP for almost 3 months.  His lungs were very immature and slow to grow/heal.   Apparently, he was taking the “scenic route” in the NICU, according to one of his doctors.   Steroids did help him to get onto Vapotherm and finally nasal cannula.  He was discharged 112 days after birth and sent home with O2 support and an NG tube.  Feeding was very difficult for Jack because his lungs just didn’t allow him the endurance to eat “normally.”  We spent 4 long, disheartening months working on Jack learning to take bottles.  We were so glad to bring him home, but we basically brought the NICU home with us without the support of nurses and doctors.  Because Jack came home during RSV & flu season, we rarely allowed visitors and took him to doctor appointments only.  It was awful (there’s that word again) to bring home your baby and not be able to introduce him to our close family and friends.  And, at the one time we most needed the support and help of our family, we were often too afraid to ask for help for fear of exposing him to illness.  I struggled daily, and still do, with myself.  For I never wanted to be so anxious as a mother, but I also had no other choice.  Jack needed to stay healthy so that his lungs could grow and heal.  We made it through the first RSV and flu season without illness and Jack was finally without O2 support by July 2011.  Our lives are approaching normal but it is still a long journey.  We are entering Jack’s second RSV & flu season and are so grateful that he still meets the requirements for Synagis.  We also keep O2 cylinders in our home, just in case.  I don’t know many parents that have to do that.  I keep telling myself that if we can just make it through one more winter, maybe we can relax and start living.  I still know that there are many people that question our decisions to limit his exposure…everyone seems to think that babies need to be exposed to build immunities.  I have to remind myself that these people never experienced a sick child so they will not understand that there are some babies that don’t “need” to be exposed…not yet anyway.  RSV is dangerous to all babies, but even more so to premature babies like Jack.  If Jack doesn’t go to the mall or the grocery store until he is two, but stays healthy, I think I will be alright with that! 

          So that’s the chapter we are on in our preemie story.  It isn’t “the end” but thankfully, we are no longer at the beginning.  No one expects to have a premature baby.  No one expects to have to watch their child struggle to breathe from their first breath.  It is a very traumatic experience and takes parenthood to the extreme.  I’ve always said that I feel like I’m on a new reality show, “Extreme Parenting.”  My husband and I had planned to have more children, but the thought of a second NICU experience is something that we may not be able to handle, physically and emotionally.  And we are also sure that we would not want to put another tiny baby through the trauma. 

        

Jack sings parts of the ABC song...(ignore my terrible singing voice please).

Could I have this dance....

This past weekend, Jack had a lot of "firsts."  He swam in the stinky bay for the first time, took his first (of many) golf cart rides, ate on the water at Irish Eyes Pub (Lewes, DE) for the first time, saw big ships, ate INSIDE a restaurant for the first time (Crabby Dicks) and went to his first wedding!  At the wedding, he danced and met his cousin, Kara, for the first time (along with other family members).  He also attempted to strip on the dance floor...first time, but will it be his last? 

Our little beach bum

Jack has something to say...

Please excuse Jack's lack of pants...and his one-legged march.

Is he really almost TWO?

I started this post last month, but Jack has been doing so many things that I can’t keep up….let’s just say, he is definitely a toddler who is nearing age 2!  Since there are so many things going on, I’ll have to stick with a list:

•  Jack has added between 15-20 signs to his vocabulary.  Here are a few:  all done, milk/bottle, drink, eat, cereal, fish, wind, sleep, baby, brush teeth, please, hat, and CAR (his favorite).  He sometimes wakes up signing “car.”    And then points to all the cars and trucks on his sheets…quizzing me to make sure I know the difference.    He also asks to brush his teeth often by signing it! 
• Jack has a few words too:  mom, dad, cheese, good, poo (?) 
• Just a few minutes ago, Jack used a fork without help to eat some of his mac & cheese.  He also “fed” his stuffed puppy & Mickey Mouse yesterday! 
• He is definitely walking, no more falling, and sometimes running too!  It’s so cute to hear his little feet slapping the floor when he runs! 
• He blows kisses and hugs and even gives kisses to Mama when he’s feeling extra affectionate. 
• He can climb up our stairs and go back down on his belly (feet first) very fast.  He can also climb on every chair in the house and sometimes on the tables too.  Note:  Jeff and I have some differences in our parenting…when Jack does this type of stuff for the first time, I run to get the camera because I’m so proud.  Jeff yells for him to get down! 
• Jack knows that he does not like sitting in his stroller when he could be out WALKING!  He also does not enjoy being in the stroller at outdoor restaurants either…because he could be…you guessed it…WALKING!  (Does the obsession with walking ever dissipate?  If the answer is NO, please don’t tell me.) 
• Jack isn’t ashamed to clap for himself.    Even after he flushes the toilet.  (No, he is not using the potty yet…just loves to flush.) 
• Jack loves to put stuff away (not his toys).
• He is getting very good at following directions and is often helpful with chores, like laundry and cleaning up a spill or putting something in the fridge. 
• Jack did go through a hoarding phase where he put everything, and I mean everything, in his ball pit.  I found a phone book and he even put in a plastic container of leftover beef.  The hoarding has calmed, but if I can’t find something…I always check the ball pit. 
•  Jack and his team participated in the March of Dimes “March for Babies” in April and I just found out that we were one of the top fundraising family teams.  How cool!  Thanks to all who participated or donated. 
• Jack went to the Fractured Prune today for his first taste of their fresh donuts.  He did like the donut, but was more impressed with the traffic in Lancaster city! 
• He’s had a few more playdates with cousins Carly & Emma, whom he loves.  Although Carly was pretty ticked when “Jackers” splashed her!  Jack also loves their mom, Tera…he looks at her with such adoration!  I think he knows that she has a little boy in her belly…his cousin Brady! 
• When Jack pretends “sleeping”…he snorts…because he thinks sleeping involves snoring ever since I fell asleep on the couch while he & Jeff were playing. 
•  Jack (and Jeff and I) will be part of the Penn State Hershey Children’s Miracle Network Telethon on Sunday (10:30a-12:30p).  This year’s funds will go to the NICU!
• Jack enjoys bringing me things from the trashcan.  Gross!
• He loves to watch his Baby Signing Time videos.  He has learned A LOT of signs!
• Jack and mommy were in the Mother’s Day special section of the Lancaster Newspaper.  Did you see us?  Thanks to BJF photography! 
• I gave Jack his 3^rd haircut.  His hair grows so fast, especially on top.  It is still red, but I definitely see some blond peaking through.  I don’t know if you remember from his NICU pics, but he was born with thick, golden blond hair.
• Jack still loves mac & cheese and grilled cheese.  He also loves strawberries, blueberries, pears and peaches.  He enjoys his veggies too:  corn, carrots and peas.  Still working on adding new stuff, but these foods are our go-to foods for him. 

I’m sure there are many more things I am missing…but know this:  Every day with Jack is an adventure.  This boy knows how to move, move, move and smile all the while :)  

On Sunday, Jack will be 22 months old!  I cannot believe it…only 2 more months until my little boy is 2 YEARS OLD!  Wow!  Jack’s 2^nd birthday…definitely has me excited, but also once again, thinking of what happened 2 years ago at that time.  Last year, was just so relieved to make it to 1 without Jack getting sick (and if I’m really honest, without the threat of losing him)  and after his first birthday, I definitely lost my mind for a few months…it is slowly coming back, thank you very much!  But this 2^nd birthday is so exciting.  I’ve been contemplating the theme for a few months, am ready to reserve the park and am going to start working on Jack telling us his age and singing Happy Birthday for practice.  He needs a little practice, because at the last birthday party he attended (cousin Emma’s 5^th), he clapped at the end of the song while simultaneously cried (because of the loud cheering, etc).  Either we practice or maybe we’ll get the same response at his party.  Oh well!  Definitely bigger things to think about…but it’s still fun to sing Happy Birthday all the time!  

It’s like a storm
That cuts a path
It breaks your will
It feels like that

(Rascal Flatts - "I Won't Let Go")

I’ve always felt that the lyrics of this song have pretty well expressed our experience with prematurity and the NICU.  And although I feel like I’ve held it together pretty well the past 2 years, there are times when I do break.  I had some unique ways of coping and protecting myself from “breaking” like not talking about it directly with anyone (rather blogging/posting), being in survival mode, not allowing people to touch me because a hug or a pat just might break me, controlling what I could (like Jack’s isolation), and isolating myself.  But yesterday, 22 months after our traumatic birth/newborn experience I did break.  It’s been awhile, actually, and I thought I was doing pretty well.  If someone asked how I was doing I would say fine/good and actually mean it this time.  I have often answered with that response in the past because it was way easier than saying how I may have really felt that day (without making the asker uncomfortable).  Is “asker” a word?  I know that I often answer the “How are you?” question without really thinking about the answer.  But since I’ve been trying very hard to be honest about where I am in this journey, I tend to answer with a little more thought.   So what caused me to break this time…could it be that Jeff and I are struggling with whether we should add to our family by having a second baby?  Will it be safe for me?  Will it be safe for the baby?  Could “this” happen again?  (The answer is:  It very likely will and that’s a longer post for another day).  Or maybe it’s the thought of going back to work in two months?  Is it right for Jack?  Is it right for me?  Or maybe it’s thinking about the fact that we’ve done so well keeping Jack healthy the past two years, but he still works hard to breath at times and we still have to be cautious about exposing him to sickness and I’m just tired,tired, tired of that anxiety?  Does it ever end?  Heck, it could even be that my awesome niece(and Jack’s cousin) is growing up and just graduated from high school.  Yes, it could be all of those things, but what it actually was, the trigger so to speak, was an innocent question from a friend.  We were out shopping for new baby boy (SO excited and happy for her…and for Jack cause he’ll have a new playmate)…and she asked if I had used those kimono style shirts (buttons down the front) when Jack was little, because they are helpful when baby’s umbilical cord is still attached.  My first reaction was to consider whether I give the short/politically correct answer of “No, never used them”….or my real, our reality, answer.  No, we didn’t use them because I didn’t even realize that Jack’s cord fell off, because I was wondering at that point in his life whether he would breath on his own or live to see the next day.  And at that point in his life, he was not to wear clothes on his too new, too sensitive skin.  Plus, he was in a heated/humidified isolette…clothes not required.  I didn’t go that far, I just said “No, he didn’t wear clothes at that point because he was in an isolette still.”  But, boy, did that belly button conversation start me on a path of flashback/memories…like Jack’s bellybutton was actually used for an umbilical catheter to deliver life saving and sustaining meds.  And even later, when his bellybutton was no longer used that way, he had an umbilical hernia and we wondered whether our tiny 2-pounder would eventually need surgery (he did, but for his inguinal hernias instead).  It made me think about how Jack’s baby book has a fill-in-the blank for the date when baby’s cord/stump falls off…and I realized that I never even thought about it.  But I did go back and look at his NICU pics to guesstimate a date, that’s for sure!  Or even later, when we came home, Jack’s belly button wasn’t used as a cute picture opportunity or a place to blow razzberries…but as a guide to help us insert his NG tube accurately so that he could be fed.  We (me or Jeff, not a medical professional) had to make sure of the placement of that tube was correct, somewhere between the top of his ribs to his bellybutton, so that his meal/liquids didn’t go into his lungs and cause aspiration pneumonia.  And don’t get me started about how that umbilical cord was attached to that darn placenta that functioned improperly, causing Jack to not grow as well as he should have (IUGR) and for causing my pre-e.  (But, on the brightside, the pre-e that caused Jack’s delivery may have also saved him from some other struggles that can occur when a placenta causes IUGR and is not discovered as early as it was for Jack).  So not only did the innocent (and it really was and I don’t want people to think that they can’t talk to me about whatever they want…but those same people best be prepared for a different answer than they may expect :) ) question about bellybuttons had me thinking about all these things…which of course led to all sorts of other things that just made me break  yesterday.  I even made Jeff come home early from work!  (I think I've only done that one other time...when Jack was smaller and rolled off the couch!  Felt like a terrible mother that day, for sure.)  Being the worrier that I am, I also worry about how I am supposed to answer questions that may have an unpleasant or at least non-typical answer.  Should I just be polite and respond so as to not make anyone uncomfortable.  For me, I think it depends on the person who’s asking.  For this friend (she’s of the best variety), I think and hope she appreciates that I’m finally able to tell her some of the things that have happened (for so long I couldn’t without getting too emotional…and of course, I’m tearing up as I type this…so I’m not as un-emotional as I was thinking I was…haha!).  But I do know one thing, I will never NOT talk about what Jack experienced…to me, that minimizes his suffering and his triumphant survival…and I will never downplay that…to make myself or anyone else comfortable.  He is amazing.  There is no doubt about it.  Even when he we play pretend sleeping and he snorts, because he is imitating me snoring!!  Yep, still amazing.    And don’t worry, I don’t look at Jack’s bellybutton every day and think of all of these things.  It’s not an every day occurrence, but there are times when something will trigger these “discussions” within myself.  They are kind of like eye floaters… sometimes these thoughts are just fleeting…but when the fleeting thoughts begin to repeat, I know it is something I need to write/release.    So thanks for “listening.”