Lilypie Premature Baby tickers

Lilypie Premature Baby tickers

Monday, April 2, 2012

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. ( (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 ( 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:

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