Week Three

So as you can see, Daniel has a lot to say about being at home. It's been as much of an adjustment for us as it has him.

The biggest adjustment for us is actually having him home. For months we've visited him in the NICU, but 24/7 Dan is a whole different ballgame. We're very thankful to have him home, but it's quite an adjustment.

For starters, Dan is pretty healthy but he's still on oxygen 24 hours a day. This means that we're tethered to an oxygen tank at all times. We have smaller tanks for the bedroom and for going out, but for the most part we stay in one corner of the living room by the big tank. I can't wait for the day I can just pick him up and carry him to whatever room I want without having to also bring a heavy tank and noisy O2 sat monitor. Just being able to move without tripping over cords and tubing will be welcome! The O2 sat monitor measures how much oxygen is in Dans blood, as well as his heart rate. This is obviously very important, but it goes off constantly with false alarms because of his movement, and the alarm could wake the dead.

It's especially fun when it goes off in the middle of the night.

Getting out of the house is important for everyones sanity, so we try to take a daily walk. We chose our stroller (Uppababy Vista) on its ability to handle an oxygen tank. We hope Dan will only be on oxygen for a short time, but we don't actually know when he'll be off oxygen. So finding a way to transport him with the tank and monitor was important. Sometimes we carry him in the Ergo or ring sling, but we still push the stroller to carry the tank and monitor. (And Starbucks cup, ahem)

Getting in and out of the car is another challenge. It took 90 minutes to get out of the house to go to his first pedi appointment, and most of that was just figuring out the logistics of how to get Dan and myself to the car with all of his stuff. Repetition is the key to this, just getting out the door over and over has helped us fine tune where everything goes. Sat monitor gets slung over the handlebar in front of the console, with the strap hanging over the foam grips. Extra cording gets wound up and popped into the drink holder of the console so it can unwind easily. Oxygen goes in the basket underneath the stroller, but zipped up in it's case so the dials can't turn when shifting. Diaper bag goes in after that for easy access. Make sure you have everything before you leave the house. Park stroller close to car, monitor in first in the front seat, oxygen tank next in the footwell of the backseat, then Dan in his infant seat into the base. If you do those out of order you spend more time untwisting and untangling cords, and if you're not careful you'll pull the oxygen cannula right off of his face. Ouch!

In addition to the oxygen, Dan is on diuretics three times a day to keep extra fluid off of his lungs. Luckily he takes his medicine easily, but it results in a LOT of diapers. We change him 18 - 20 times a day. I'm happy to report that the cloth diapers are holding up well, and it has actually made it very easy to see how much he's peeing (vs a disposable diaper where the urine is turned to a gel instantly, difficult to see just how wet it is). The downside is that Dan feels the wetness right away and lets us know that his Highness needs changing. Immediately. The diapers are pretty easy to change and because he's never in a wet one for long, the Royal Tushie is in great shape. No diaper rash here!

I'm considering getting some fleece liners for the diapers to cut down on that wet feeling for certain times. Dan isn't a great sleeper, so if he actually falls asleep and then wakes up shortly thereafter because he's wet, well that's frustrating. We're working on a setup that fits all of our needs and wants, so there will be some tweaking to the routine. So far we're very happy.

 The diuretics also makes it harder to see if breast feeding him is working. Normally you can determine successful breastfeeding by how many wet/dirty diapers a baby has. But the purpose of diuretics is to make your body pee - so even if Dan isn't getting anything to drink, he'll still pee. We're doing weight checks at the pediatricians every two weeks, sooner if we have any concerns. My hope is that he'll have a big enough weight gain that we can drop one bottle, and go week to week like that until we're just breastfeeding. If that doesn't happen though, that's fine too. The most important thing is that Dan be fed; how he gets his meals is secondary. Breast milk has so many amazing health benefits, and I'd like Dan to reap all of them, but if he needs some formula he'll get it and we'll be happy with that. My long term goal is to breast feed him for a year. If I can't do that then I'll shoot for nursing him through RSV/Flu season this winter. Can't do that, then my goal is until the end of the summer. And if I had to stop tomorrow then I am proud of what I've accomplished so far. That's the trick to all parenting I assume, but especially with this preemie gig - keep your goals but be flexible and willing to change them as necessary.

The biggest hurdle we have is sleep. As in, we get none. Dan has a really hard time falling asleep and staying asleep. He doesn't nap well during the day, and he doesn't sleep well at night. We're all pretty exhausted! Everyone says to sleep when the baby sleeps, but if the baby doesn't sleep, when do you?

Aside from our own misery (we understand why sleep deprivation is used as a form of torture!) our biggest concern is his health. When your body sleeps, it recharges and regenerates. This is when growing happens. Dans lungs need to get bigger in order to improve - if he isn't sleeping he isn't growing, if he isn't growing he isn't building new lung tissue. Our concerns constantly cycle back to his lungs and their need to grow and improve.

In our quest to get him to sleep we are discovering some tips and tricks that work for Dan. Conventional wisdom doesn't always apply to us - we would love to pace the halls and lull him to sleep as countless generations have done. However, we're tethered by a 6 foot oxygen tube, so unless we take the tank with us, there's no pacing the halls for us. He does respond well to white noise, so we have a sound machine that plays ocean sounds and a white noise generator that blurs heartbeats over white noise and we run them both simultaneously very loud. It's made for some crazy dreams for me, but it does seem to work. We are becoming master swaddlers - don't worry, hip friendly swaddles only - and while Dan puts up a good fight he usually ultimately submits. Swaddling is reminiscent of the confinement of the womb, and something the NICU utilized frequently. It also helps to develop neuro-pathways in the brain. Double bonus, plus a quiet baby? We'll take it!

That's about it so far. We knew that coming home would be a huge adjustment for us, but we hadn't anticipated how much of an adjustment it would be for Dan as well. Different sounds, smells, textures, routines. It's a lot for the little guy to handle! His medicine schedule is pretty easy to follow, and he takes his medicine well, but it's a little stressful to think that if we forget a dose he might have a setback. Don't worry, we haven't forgotten a dose yet. We're learning that the usual ways to do something might not always work for us, but we've gotten creative and are remembering to try new things in the hope that something will work a little better. Keeping him healthy and growing is always on the forefront of our minds, and while we're frustrated by the lack of sleep, his cute smiles make it all worthwhile.

- Jen