Newfangled Dad

There's light at the end of the tunnel. We kept hearing that and you know it's true. But I'm here at the end of the tunnel to say, "it's true." We're completely over the misery of Leda's early days. She's a healthy, strong-like-bull little girl who smiles at us constantly as if to say, "sorry about that guys, I got ahead of myself." But let's also say "not forgotten" about our stay in the NICU at Loyola. We have to drive by it to get to our zoo and every time we pass, something unprintable gets said. I was going to politely say we have some unresolved issues...but then Kelly cut me off last night with a simple, "I hate them." Worst of all, it wasn't even that our little girl was premature that frustrates us to this day. I suppose it's a blessing that her problems are behind us, we can move forward, and forget how difficult it was. When we get around to the part of the conversation, however, where it end...

It's on my mind and it's looking closer and closer to bringing Leda home, so might as well post a few things before it's too crazy... I don't want the issue of families in the NICU to really move to my back burner though. We've already discussed that, as a family, we'd like to do some fundraising races for March of Dimes, etc. And it should also be said that I want to give Loyola a fair shot at responding so I won't give them a full rant. For all I know, they're like many hospitals and currently planning a redesign of their facilities. After a couple discussions, some research of what others are doing in the region/nation, and more experience with our current hospital though, I'm not happy with the way families are treated at "ours." I can't say my daughter has received bad care. I'll give them a C. But it borders on a lower grade when you consider that I haven't been exactly getting the idea that they're cutting edge, b...

Your kid is either fine or not fine. And you know the difference. That little rush of blood when there is a rush of doctors lets you know where you stand. Obviously, your kid isn't "fine" or they wouldn't be in neonatal intensive care. But there definitely comes a point when you come to face reality and it isn't so bad. It's still your kid, your heart. And the worst part of being in the NICU isn't the sick babies. Don't get me wrong, it's heartbreaking. I'm guessing the hardest part for the parents is the little stuff though. Kelly and I consider ourselves strong people so if it gets to us then it has to be even worse for the families there longer, with sicker kids, who have farther to drive, less time to visit, etc.. Because the absolute height of frustration is that someone else is parenting your child. She was supposed to be home and, as the parent, you really do know best. Especially if you have other kids you know what I'm talking ...

A word about the following...it's a rough draft of what I hope is an ongoing discussion in the community about creating a better Neonatal Intensive Care environment for babies, parents, and medical staff. It comes from experience as a parent and the only experience I have is with the Loyola University Medical Center in Chicago--a 50 bed, Level III facility that is one of the best in the nation. My daughter got amazing care, but even the strongest families can suffer with stays that last weeks or even months. Some of the following suggestions are simple. Some are not. My plan is to forward them to various sources when I feel that the list is more complete. They are in no particular order. Parents should receive, at bedside (or online), a daily summary of their baby's day for easy reference. Bed areas should have curtains for privacy during family visits and perhaps a more homelike feel with rocker, chairs, table, etc.. For longer stays, mom and dad should have easier acc...

Big update on Leda today that was just too much for FB or Twitter. So welcome if you're new to the blog. Feel free to stay and read a little more if you'd like. Sorry for the medical jargon, but it's our world right now. She was doing great yesterday. Nursing, taking feedings by bottle, drinking what she should. A couple mild episodes but her temp was great and she's gained back weight to 5 lbs. 1 oz. So I'd already told myself that today may be a "down" day because she worked so hard earlier. But overnight she had a series of about 6 low heart rate and breathing desats that kind of exploded us into a series of forks in the road now... They opted to re-dose her with caffeine because the episodes were at the end of where last week's would have worn off. Unfortunately, that automatically (maybe) adds 2 more weeks to her NICU stay because they need to wait the week of the caffeine--she will get maintenance doses this time--plus an extra week to see ...

I love science. This is not a rant against science. I work in a science museum for goodness sake. I want us to improve our science test scores, believe more in evolution and less in people riding dinosaurs a la Flintstones, and use technology to save our planet and humanity. But I'm also of the growing opinion that a hospital is the last place I'd want to go if I was actually sick. Last night Kelly asked me if I think a Higher Power is acting on behalf of Leda and when I answered yes she laughed a little because I'm not spiritual. I corrected her--I'm not religious. I don't like when things get institutionalized. I don't like when people or organizations resist change. And a little  lot of what we're experiencing in the NICU has to do with simple human traits. We're set in our ways and we're flawed people. The hospital is no different. Leda's care and our experience as parents has so much to do with who her nurse is for 12 hours or 8 hours....

November will be Prematurity Awareness Month and Nov 17, the day before Leda's due date, is World Prematurity Day. Worldwide every year, 13 million babies are born early and 500,000 of them are in the US. That's 1 in 8 and the rate has risen 36% over the last 25 yrs. It costs $26 billion a year and is the #1 killer of newborns. The US receives a grade of D in premature infant care and no state receives higher than a C. Please check out some of the following. Give if you can. Share, support, and keep the families of NICU babies in your thoughts & prayers. We're the lucky ones, but there are plenty of little Leda's friends who will be staying a lot longer or not coming home.  March of Dimes Foundation Preemie Voices Graham's Foundation Illinois Premature Infant Health Network (IPIHN) World Prematurity Day on Facebook

Wow, it's been a little crazy. Last week's early-morning volunteering at the marathon I had no clue what was ahead. And it's funny looking at my neglected blog admin page seeing an unpublished draft about how our daughter was breech. We'll just go ahead and delete that. lol So, little Leda was born last Monday on 10/10/11. What a great birth date. Six weeks early, but we're guessing she's just going to be the difficult one all her life. Heh. We were sitting in Giordano's eating some pizza when Kelly ever-so-casually mentioned that her water may have broken. Should we call the doctor? Umm, yeah. But we didn't have any of this experience with my son. He was induced and it was a leisurely trip to Starbucks the morning before we started his (much more difficult) labor and delivery. But now we have a new tradition for her birthday. Pizza the day before every year! I have so much to say...about the unorganized volunteer setup for the Chicago Marathon l...