Newfangled Dad

Sharing a message from the March of Dimes...please support them and their excellent work...and tell your elected officials you want to lower the preterm birth rate!  PREEMIE Reauthorization Act Introduced in U.S. Congress   This week, Senators Lamar Alexander (R-TN) and Michael Bennet (D-CO) and Representatives Anna Eshoo (D-CA) and Leonard Lance (R-NJ) introduced the PREEMIE Reauthorization Act of 2013 (S.252/ H.R. 541) – comprehensive legislation reauthorizing critical federal research and programs that will help identify the causes of premature births, and work to prevent them. Thanks to your tireless efforts as advocates and supporters, we made critical advancements moving the PREEMIE Reauthorization Act forward last year. During the last weeks of the 112th Congress, both the U.S. House of Representatives and U.S. Senate passed the PREEMIE Reauthorization Act, but it didn't become law due to procedural entanglements. With the new Congress now under way, we...

We watched the new series on PBS last night, Call the Midwife , about nurses delivering babies in 1950's Britain...the pilot has a nice medical focus on the new advances of the day for keeping premature babies alive. It was a message that hit home. In a different time, our daughter wouldn't be here. She certainly had her ups and downs as a preemie, but there was rarely a doubt in my mind that she was in any critical danger. Certainly very sick, but modern science is amazing. Babies born far sicker, earlier, and smaller than our Leda survive to healthy childhoods. But still, the ordeal of being in the NICU for a month was an experience that we would neither wish on anyone nor find easy to explain. Sure, I'm guessing you are imagining the struggles if you haven't gone through it yourself, but it's actually the little things that get to you. It's not your sick child, it's the parking garage or the buzzing into and out of the unit. It's the long walk dow...

We're so far removed from last October's blur of NICU visits that it's hard to believe how difficult it was. Long gone are those days of gently holding a tiny 4 lb-something preemie who couldn't eat, we could barely dress her she was so delicate, and you had to hold her just so to prevent her heart rate from dropping. She'd stop breathing and the alarms would ring. Now, she obsessively pursues air conditioner cords, the dog, and food she isn't possibly old enough to eat. She claps and crawls and falls down hard before sitting back up without so much as a cry. We knew all along she was a tough girl. Yesterday's doctor appointment was notable for what it lacked...mainly, any bit of concern on the part of anyone. The main hiccup was the receptionist writing our time down wrong on the appointment card so that we arrived 30 minutes before any doctor. She may be a little on the small side still--17 pounds, 6 oz which is 25th percentile--but we've ditched t...

Actually, we had a lovely weekend. It just had a few...hiccups. Friday afternoon I went out of my way to go back to the specialty bike shop for a test ride. Shout out to The Bike Shop in Glen Ellyn where they have awesome service, a nice selection, and patient answers to questions! For me, it was between a Felt Verza and the Scott Metrix. Which involved 3 bikes because the Felt has 2 versions--one where you can lock the suspension on the front fork. Ultimately, the Scott won though the Felt was a more comfortable  bike. I liked the handling and more sporty aspects of the Scott, plus the shifter style. So really the choice was between the upper model Felt and the Scott...over $100 in price. So far, I've taken 2 rides on my new Scott and love it though. But there I am, in the store, and decide to actually buy the new bike...which I wasn't sure I would do. And now I'm on my way to the grocery with no bike rack on the Subaru so they were nice enough to hold my purchase unti...

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...

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 ...

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