Weight Woes

While Dan was in the NICU he was weighed every day. The first thing I would do when I went to his room would be to check his weight card. Losing weight would be disappointing, no change was acceptable, gaining even a few grams would be cause for victory. His birthweight was just 680 grams, or 1 lb 8 ounces. His lowest weight was just over a pound at 520 grams. Every gain was so important.

While he was in the NICU he was on a strict feeding schedule. In the beginning, all of his nutrition came through his IV. As he stabilized he was started on fortified breast milk through his NG tube (the tube that went from his nose to his stomach). In the beginning he got a scant 0.5 ml every three hours - that's 1/10th of a teaspoon. Slowly, he grew. 

At discharge he was bottle feeding 2 ounces every three hours. Quite an improvement from the drops he started with! This was 50% breast milk and 50% formula, with the hope that when we got home we could work on increasing the amount of breast milk and reducing the amount of formula. 

After our initial pedi visit we were scheduled for a weight check this week - this would be the true test to see if breastfeeding was working! He's now 8 lbs 6 ounces! Unfortunately, he hadn't gained enough weight and we're going to add in another bottle of formula to try and up his weight gain. Dr Q wasn't terribly worried, he did gain weight from his last visit, it just wasn't enough. Our big goal is to get him as big as possible by the time RSV season starts this fall - the bigger he is, the more lung tissue he'll have. The lung tissue that grows won't be affected by his BPD, his preemie lung disease, so the more new lung tissue he has the better off he'll be. 

We're still giving breastfeeding all we've got, and hopefully we'll both get better at it. But for now we're going to try and chunk up our monkey with extra formula and nursing sessions. 

- Jen

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

Happy Father's Day!

Today was a special day, it was all about Daddy. I knew he was special, but I didn't know there was a whole day just for him! Mommy told me all about it, so I did my very best to be good today.

First, I woke up really early so I could spend extra time with him. In the mornings he and I go downstairs and we snuggle on the couch. You might not understand because it's a guy thing. Now that I'm a big boy I get to do guy things with him.

Then he opened up a present from me and Mommy. We got him shirts, which I think is boring, but he liked them. I think we should have gotten him a big bottle with prune juice, because MMMM that stuff is good!

Later I took a really long nap so that Mommy and Daddy could get some sleep. It's funny, I'm starting to think that they don't like to play in the middle of the night. I must be wrong on that though, who wouldn't want to play with me in the middle of the night? I'm Daniel, everyone wants to play with Daniel!

- Dan

Complaints

This Home place is nice, but I miss my NICU.

First of all, did you know that there aren't any nurses here? They sent me home alone! With just my parents! Are they insane? Daniel is used to lots of people to visit with and hold him and tell him how handsome he is. Now there's just Momma and Daddy. They're nice and all, and I love them a lot, but where did all of my people go? Where are my favorite nurses? Where are the people who snuggle me all night long?? Remind me to file a complaint about this. 

Also, the service here leaves a little to be desired. Now, don't get me wrong, Momma and Daddy are taking pretty good care of me. But I kind of think that they're just making it up as they go. For one thing, my diapers. Now I don't think I ask for very much in this world, but a clean diaper is one of them. A clean diaper makes it easier to think about your day. Momma and Daddy don't have the same diapers they had in the NICU, they have diapers that are like my clothes. Momma calls them cloth diapers. And while I admit, they are nice and soft on my tushy, they get wet awful fast when I pee. Momma says I wear these because they have less chemicals in them. All I know is that I apparently have to tell her when I pee or my tushy gets wet! She's prompt with a new diaper, but I really wish she'd figure out when I pee so she could change it without me having to tell her about it. Have you ever had a wet tushy? It's mortifying! 

Also, in the NICU I got all of my bottles right on schedule. Momma would come and nurse me in between bottles, but those nurses ran a tight ship. I always knew exactly what time it was based on when my bottles were served. Now that we're home Momma has this crazy idea to try to nurse me all the time. I only get four bottles a day! The rest of the time I have to work for it. Is she trying to starve me? I mean, I like the snuggles, and she keeps telling me how healthy it is for me to nurse, and that breast milk does taste better. But I miss the days when I could just lay back and have a warm bottle brought to me. 

Bedtime is another issue. Now, in the NICU when I went to bed I had people check on me all night long. They would come and play with me, and sing me songs, and snuggle with me. Now when it's bedtime they put me in my crib and just lay down. That's it. No games, no snuggles, I'm just supposed to lie there. Where's the fun in that? What if I'm not tired? My crib is attached to Momma and Daddys bed, so it's easy for them to pick me up when I start crying. I just wish they'd get some better entertainment. They did start making this funny sound lately. It comes from a box by my head. Momma says it sounds like the ocean, whatever that is. It's very relaxing, and Daniel likes to relax. Sometimes I fall right to sleep after nursing and snuggling with Momma and listening to the ocean. But not all the time. I don't want them to get too used to that. 

One of the nice things at Home are Walks. Sometimes we all go on a Walk together. That's when they put me in this moving chair called a stroller, and we go outside where it's bright and smells nice. We go up and down hills and all around. It's lots of fun. I wish Daddy would go faster though. We go up these huge, giant hills that would be perfect for going really fast, but nope. We go down at the same pace. Sometimes Momma carries me in her clothes. She calls it a sling. I like it because I get to see different stuff. It's very bouncy, this walking business. But fun. 

I still see some of my old Drs from the NICU, and some new ones. First I met Dr Q. She's a really nice lady. Her hands were nice and warm when she touched my belly. Daniel liked that. She said I was very handsome, and of course she's right. I get to see her again next week. 

Then I saw my old nemesis, Dr K. He's my eye Dr. He squirted funny stuff in my eyes again and held me down while he looked in them. I tried to pee on him, but I couldn't with all my clothes on. He says my eyes look good and that's a good thing. Plus, he's right. I do have very pretty eyes. 

I get pretty crabby in the evenings. Momma holds me and bounces me a lot. Today she put me in this funny thing called a swing. It was so much fun! I went back and forth, and back and forth, and back and forth. Then I fell asleep so I don't remember what I did after that. But I liked it. Some nights when I'm really cranky we go for a car ride. I like to ride in the car it's very relaxing. We never seem to go anywhere though, we just drive around and around. 

Hopefully I'll get them on a better schedule next week. I don't know what those nurses were thinking when they sent me home alone like this. They seem to train pretty easily, so that's a good sign. 

- Dan

Busy Days

Thanks for visiting!

Despite the title of Daily Dan, our goal isn't to post daily, but frequently enough so that you can keep up with Dan as he grows and develops now that he's home. 

So far he's settling in nicely, which is to say that we're exhausted! He may be four months old, but cognitively he's a newborn. So there are many sleepless nights over here, with constant diaper changes and nursing sessions. It's nice to be normal! 

We met with Dans pediatrician yesterday. Dr Q is wonderful and reassured us that Dan is perfect as well as handsome. Dan agrees with her. She gave us lots of down to earth advice, but she's also fully capable of taking care of Dans medical needs. Right now Dan takes medicines (diuretics, mutilvitamins) four times a day, is on oxygen continuously (and a special monitor for that) and is on 4 bottles a day of specialty high calorie formula. In a week we can drop a bottle and we'll check his weight again at the office in two weeks. If he's gaining and growing, we can drop some more bottles. Our goal is to exclusively breast feed Dan, but we'll go with whatever he needs. We're pretty focused on weight gain and growth because he started out so small, but also because as he grows he will develop new lung tissue, and that new lung tissue won't be damaged. The bigger he grows the less intervention he'll need, so less medicine and less oxygen. Yay! To imagine a life without oxygen and monitors and medicine! 

Getting about is a little difficult, but we're figuring out what works and what doesn't. We have one huge oxygen tank in the living room by the couch and his pack & play, and several smaller tanks that we use for overnight or for going out of the house. Maneuvering around with all of this is challenging, but getting better every day. It took me 90 minutes to get out of the house to get to the pediatricians yesterday, hopefully it'll only take 60 for his Eye Dr appointment next week! 

We're getting closer to figuring out his patterns and needs and wants. Sleeping is definitely something that we're working on as Dan seems to have been told that he doesn't need to sleep at all at night. Not sure who sent that memo out... 

Lastly, the dogs seem to be adjusting well to the new addition to the family. They mostly just sniff around him and then sit back looking confused. They hate the oxygen monitor though. It goes off constantly at the decibel of your average smoke detector. Not fun. But at least he's home! 

Life with a 4 month old, er newborn, certainly is interesting!

- Jen

Welcome!

Welcome to my new blog!

My other blog was just for sick kids in the hospital, but now that I'm a big boy and live at home, I needed a new one. Momma and Daddy said that they would write in it too. That's cool because then it's a family blog!

Right now we'll talk about what life is like now that I'm home and how things are different from the NICU.

I can tell you some things are different already. First, did you know that Momma and Daddy are sleeping in my room? They said that it's really their room and that I'll move into my room in a few months. It's fun having them right next to my bed! Except for Daddy. He snores.

I miss my nurses and my friends. The alarms are different here, they're louder. My diapers are different. There are dogs here. But it's nice to be able to snuggle Momma any time I want to! And she must love being able to snuggle me any time she wants to. Of course she does, I'm Daniel!

- Dan