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.”   

March for Babies 2012 - Thank You!

Is Jack walking or running? You decide.

If you have a laptop, turn it sideways to watch.

It's been awhile! (April 2, 2012)

Bear with me…this is a LONG ONE!

Oops! It’s been almost two months since I’ve written about Jack and his journey. Sorry! (Although, if you are on FB, you may feel more “in the know” about Jack's adventures.) Jack has been keeping me busy because he is FINALLY walking! And I mean walking all the time….no more butt-scooting or crawling. It is so awesome! He has realized that he can get places a lot faster on his feet than on his tiny hiney or his knees. There are even times when I think he is RUNNING! Especially when he hears me open the front door (guess he’s seen enough of the inside of our house) or the dishwasher (not sure what that’s about). With his new speed, Jack has also developed a new sense of independence. We had been somewhat lucky for awhile, what with his easygoing manner, but now he is refusing his usual meals and foods and really has an opinion about which direction we should go when out for our walks. Yesterday he led me toward the entrance to our development so he could see all the cars on Lancaster Avenue. He’s got a thing for cars and dogs. Kinda like his daddy. In addition to walking, Jack is also waving (infrequently, but still waving), drinking from a sippy cup, and doing lots of climbing. He also can pick his own nose and scribble on his baby etch-a-sketch without any help! Yesterday he was calmly sitting on the couch watching Disney Jr, so I thought it was safe to walk to the kitchen for his bottle…silly me. By the time I got back, he was hanging off the edge of the end table with his feet dangling. He obviously crawled over the sofa arm, onto the table, and tried to get down. Hey, at least he is going down feet first instead of head first! (We repeat the phrase, “Belly down, feet first” a lot in this house.)

While Jack’s walking is awesome, it has led to some anxiety about his WEIGHT. Imagine that. Unfortunately his last weigh-in at the pediatrician showed a loss of 2oz. I know, it seems like such a small amount, but when every calorie counts, it’s deemed too much. I try to stop myself from worrying so much about it, but I’m not usually successful. It’s difficult when we have to “answer” to so many about his weight (pulmonologist, nutritionist, and pediatrician). Believe me, I would be generally concerned about his overall nutrition because all moms are, but these docs make moms of skinnier/smaller babies feel kinda crazy sometimes. Jack does not seem to enjoy meals with me anymore…probably senses my anxiety, huh? But, he has gained recently and now weighs exactly 20 pounds! Woo hoo! He has tried some new foods and has taken a liking to peanut butter and crackers. Today he also tried cream cheese (on crackers), blueberries, and strawberries. He didn’t love the strawberries…but I do, so more for me! Oh, and he also really likes Nutella!

Developmentally, Jack is shows some delays and probably will be for awhile. But he’s also showing a lot of new skills every day J We heard a lot of the “catch up by 2” phrase in the NICU (and beyond), but I’m beginning to think that phrase arose back when prematurity was more common at 32 weeks or older. Those babies were 2 months early and had 2 years to catch up to their peers. (Why the insistence on catching up, I’ll never know and I hope that someday that notion disappears and preemies are allowed to develop without always being compared to full-term babies. But compare “they” do…and by “they” I mean mostly medical professionals who are the keepers of the “charts.”) But, now that babies are surviving at even earlier gestations, that “catch up” term needs to be adjusted….I look at it this way, Jack was 3 months early, so he has at least 3 years to “catch up” to his peers. If we also add in the extra month in the NICU (past his due date), plus his days at home tethered to an O2 tank and a feeding pump, well, let’s just say that Jack (in our eyes) can develop as slowly or as quickly as he would like. But that doesn't mean that I'm going to pretend that he doesn't need a little support (from us and his therapists). I really try hard not to compare him to other kids his age…as I type that, I know that it’s so not true, but maybe typing it would help me stop comparing? Haha! And just an FYI, I think all parents compare their little one with others, but most parents don’t love it if someone else points out the differences. And unfortunately, Jack’s “differences” are pointed out often by his therapists (not because they are “debbie downers,” but because it’s their job to catch these issues and help correct them). But, knowing that it’s their job and not having an emotional reaction (as a parent) is often difficult. Jack now has three therapists (OT, PT, Speech). OT is still once/week, PT once/month, and speech is twice/month. Jack is definitely making more sounds and says “mum mum” a lot now! He is also using some signs (more, all done, dog, bird (once), eat). I am thinking about signing us up for a Baby Signing Time class in May too.

Yes, you read that correctly, I may take Jack to a public place with other children/people. RSV season is almost over and even though I have MUCHO anxiety about the idea, it’s time. (Just ask my nieces about my meltdown when we attempted to take Jack inside a Grotto’s pizza restaurant. By the way, he did love the pizza, even though we ate outside in the chilly weather. I figured no pizza was worth a possible illness at this point.) We are hoping to start being less strict about our restrictions on Jack’s exposure to others people / children / public places. We’ve given his lungs almost 20 months to remodel, heal, and grow and as much as I hate to say it, it’s time to put them to the test. (Although, I think Jack did have his first stuffy nose a few weeks ago, caught from me!) We really have no way of knowing how healthy his lungs are unless he gets sick and we see how he handles it. An x-ray might show us what they look like now (last one was in the NICU), but his pulmo doesn’t feel the need for an x-ray until he actually needs one (due to illness). To help ease our anxiety as we leave our “isolation” era, just know that I will be carrying hand sanitizer and will ask you to use it when Jack is around, especially if he wants to play with you J I will probably also ask you about your health status and ask you to steer clear of Jack if the status is sick! I don’t think this is too much to ask; if you do, please let me know.

When I write about Jack, I hope that I am portraying how awesome he really is. But, I also need to talk about the reality of prematurity. Some of that is positive, some negative…but it’s our reality. When I look back at Jack’s CarePages from his NICU journey, I am sometimes puzzled at how positive we often sounded…because the reality of his early birth and the NICU stay are not exactly positive. But while you are in the situation, keeping positive is the only way to get through it. For example, on the day that I was discharged from the hospital, I wrote that Jack had some “breathing” problems. I read that now and I laugh at myself. Seriously, Heather…”breathing” problems. In reality, we watched doctors, respiratory therapists, and nurses crowded around our 2 pound, very fragile son, as they attempted to save his life. He was being “bagged” because none of the attempts to have him breathing with the help of a machine were working and we were feverishly signing paperwork to get him the blood transfusion that would save him that day. He was 4 days old. That will haunt me for a long time, but I also know that things are getting better. I know that I also suffer from PTSD. (http://www.lifewithjack.com/2012/02/post-traumatic-stress-disorder.html) (This link is not my writing. It’s another mom of a boy named Jack born at 23 weeks., but I think she states it way better than I could.) I’m aware, I’m dealing in my own way and my own time…and I know that, really, time is one of the best ways to help heal from that. How much time? I don’t know. But at 9 months, it wasn’t enough time. At 12 months, I was a mess. At almost 20 months, I find myself doing much better. But I’m not in any way “over” our experience and I don’t know if I ever will be (Jeff isn’t either). But now that Jack is doing SO much better, I have found myself processing all that he/we have experienced and my concerns now lie with, taking care Jack, of course, but also with keeping myself educated and aware (and hopefully educating others in the process). I do have a problem with news stories that talk about preemies as if they don’t have side effects from their birth. I think that presents an unrealistic view for new parents of preemies and for the general public. That’s why I chose to do the RSV/prematurity satellite media tour (http://jackryansjourney.blogspot.com/). I felt proud to advocate for keeping all babies safe from RSV. There’s a lot of guilt in being a parent, whether it’s because you can’t stay home with your little ones or because you couldn’t stay pregnant long enough. But this experience finally allowed me to experience pride as a parent. I’ve always been proud of Jack; but maybe not as proud of myself. But again, I know that all parents wonder whether they are making the right choices for their child. In fact, the SMT brought out some concerns that I had about the way we’ve limited Jack’s exposure to germs, and in turn, had to limit his exposure to his extended family. I feel bad about that; I struggle often with wanting to just take him and visit everyone and everywhere. But I also know that up until recently, doing that was more for me than for Jack. Now I know we are at a point where Jack needs to see his family and socialize more with kids his age. I know he will get sick, but that doesn’t stop me from being anxious about it. I don’t ever want to see those doctors, nurses, and therapists around my little boy’s body! But, I’m somewhat reassured in the fact that we have kept him healthy long enough and given his lungs long enough to “remodel” that an instance like that is A LOT less likely to happen now.

I’m not saying all this so that people think we have it so much harder than other parents or to imply that we can’t handle the experiences we have been given. Obviously, we are handling it…in different ways at different stages of this journey. Parenting is hard…period. But, I also think that parenting is different for each parent and sometimes a parent’s “awful” is at the very beginning of life (like ours) or their awful is when their little one is 5 or 18. Everyone's awful is different. Even other preemie parents have different "awfuls" than ours. And it's not just our "awfuls" that are different either. My friend has twins…her parenting experiences have to be way different than mine. Don’t get me wrong, we have parenting things in common, for sure. But we also have differences and acknowledging and accepting them go a long way. Another friend is having her third...there’s no way I can comprehend what that would be like (even though I’m the daughter of someone who had 3 children). I think as parents, we are all in this together, but that we can also learn from each other. I’ll be the first to admit that when I want to talk about our experience, when someone starts to compare it to something they think is similar, I start to shut down. It takes a lot for me to actually talk (not write) about what happened or is happening so when I do, I need listening, not comparing. Another person might want to hear similar stories. Everyone copes and processes in different ways. Something else that has helped me process our experience is participating in teams and projects with the NICU at Hershey. Right now we are working on a new binder with information for NICU families to help keep them organized and informed. I know that when we were there, I was more overwhelmed by the uncertainties Jack faced. So I feel like giving parents concrete information, even if it’s just a map of the campus and a list of resources, then that will give them one less thing to wonder or worry about. As part of the Family Advisory Council, we were able to take a hard-hat tour of the new children’s hospital. Wow! They have done everything they can to create a space for children and their families that makes the best of some very difficult situations.

And I couldn’t leave you all without one last reminder about the March of Dimes walk on April 29, 2012. Here’s a link to Jack Ryan’s Team:

http://www.marchforbabies.org/s_team_page.asp?seid=1762925

You can join our team, donate to MOD or just look at the super cute picture of Jack

A few more minutes of fame

Jack's Celebrity Mommy!

I had to wake up at 4AM on Monday. Ugh! Jack never wakes up that early, well, except since those early days when we had to feed him every 2-3 hours. But, waking up at 4am yesterday was still worth it...because I was able to advocate for my preemie and new babies all over the nation (via satellite). I was invited to NYC to make others aware of prematurity and RSV (go to RSVprotection.com for more information). I'll tell you all more about the adventure later, but here are a few videos of my interviews.