(Not) California Twins

The world is against me getting to California, haven't you heard? Maybe it's because it's going to fall into the ocean and some greater power wants to keep me and the twins above water?

Who knows.

But I may never get there. The twins may never get to see their nursery and new cribs and toys and books and swing.

And I'm mostly using this blog as a way to vent. Because I'm upset and frustrated and just really want to get settled in California. But of course, that's never going to happen.

So while Jack's equipment is FAA A-ok, we don't have the battery life to go from Pennsylvania to California. And we can't plug any of the equipment onto the plane, so says the lovely people at United. So essentially, we can't go. We can't go without the equipment and I don't want to risk Jack really needing it and we only have enough battery to use it half of the trip. I don't know how he'll handle the plane or how his lungs will adapt to the pressure changes and oxygen changes. But I don't want to find out the hard way that he can't handle it and not have the necessary equipment to keep him breathing.

So we're stuck. I don't know how long Jack will need the oxygen and monitor. He's still having issues breathing, especially while he eats. Getting to California isn't worth his life. I just don't know how to get there.

Don't say drive. Don't you dare. We'd have the same battery issue on the road and I don't want to get stuck in Iowa because Jack had a medical emergency and had to go to a hospital there. That'd be even worse than being stuck in Pennsylvania. Atleast I have family here.

So we're in PA. We're stuck in PA. We may never make it to California. It could be months until Jack is strong enough that I'd feel comfortable taking him on a plane without the monitor and O2.

Anyone have a private jet we can use and plug our equipment into on it? That'd be super, thanks. I kind of miss my husband. And my car. And my bed. And my clothes. And my sanity.

Venting over.

I have pretty babies.

The end.

California Twins

So things are moving along with us to go to California! Finally! After the hubby has been stationed out there for 3 months now, and I've been living at my parents for 3 months, I think we're all ready to get to where we're supposed to be and start getting into a normal routine with our brand new babies!

Our big hold up wasn't exactly health concerns, but medical equipment issues. Jackson is still on the monitor and oxygen. He still needs the oxygen from time to time and the doctor has concerns about him flying without the oxygen. Problem is, we only have a huge O2 compressor for at home use and compressed o2, which is not allowed on a plane. So we need a portable O2 compressor. I didn't think we stood a chance with our insurance approving it, but the lovely people at the medical supply company and doctor's office made it happen! They're bringing the compressor next week and we will have a little while to practice using it before we have to go on the plane with it!

So we need a flight booked now and we're set to go!

Also to get ready to go we decided to have the twins baptized in the church we got married in. When Tom flies back to help me bring them to Cali, we'll be getting them baptized. It's also easier for our families, since they all live in Pennsylvania.

So things are really starting to come along.

After a walk on the Rails to Trails yesterday morning, I thought I'd get the twins used to the California sun and took them outside (under an umbrella in a pack and play, they were safe, stay calm!)

Apparently, we live just a short distance from the beach out in Cali. These guys are sooo ready for that ;)

Runaway

My daughter is trying to run away...

Should I be concerned? She should bring her green hat! (name that movie haha)

Good thing baby boy would never leave his momma :)

The Great Bottle Debate

Since I was planning on breast feeding I didn't even look into bottle feeding at all. Of course, all of that changed when I had my preemies. Eating from a bottle is easier so when they're so small and just developing the muscles they need for sucking and swallowing, it's important that they get practice and learn how to eat before they can really conquer breast feeding. So after 2 weeks of attempting to breast feed, I gave in and let them give my babies bottles. They took to the bottles quickly and really, that's the only reason we came home at 35 weeks.

My biggest worry with giving them the bottle was that they'd never have the urge to breast feed, since that's so hard to do and the milk just drips out of the bottle. It doesn't seem to be quite an issue yet. They nurse fairly well but only have the strength to do it for 10-15 minutes, which isn't long enough for them to get the 2-3oz of food they need. The options then are bottle feed them afterwards so they can get everything they need in that feeding OR feed them every 2 hours or so. I chose the bottles, mostly for my sanity, so I'd have at least a little chunk of time in between meals to do crazy things like laundry, eat food, SLEEP, or go to their many doctor appointments.

But then, reflux happened. and now bottles are my nightmare.

Any new mom who is trying to register for baby items knows there's about 109380 different choices for some products (like pacifiers, bottles, blankets, soap...) and every bottle says they fix a problem. So allow me to help you, new moms who are interested in bottle feeding. Or preemie moms bringing your babies home with bottles.

We came home with a good chunk of volufeeds from the hospital.

Easy to use, disposable, quick and simple. Problem: we went through them like candy with the 2 babies. We went through a big bag in about .6 seconds. So obviously, finding a non-disposable bottle was our only option.

So walking down the baby aisle, there are a few bottle options. I had no idea what would work best. At the time, Amelia was a burpy and sloppy eater, but she ate and she was still only 35 weeks so she had a bit of growing up still left to do. So we got the Playtex VentAire bottles.

They worked great, for a little while. Then Mia started throwing up half of her feedings. When she did eat, half of the food dripped out the side of her mouth. She didn't cry a lot because she was hungry and was still having the right amount of dirty diapers for a day so we let her go. But it kept getting worse and worse. Before we took her to the doctor we thought we'd try a few tricks.

First, we put her in her carseat (because that's the only baby item I have that has her sitting upright) for about 30 minutes after she ate. And second, we thought we'd try a new bottle.

Our first attempt was going back to some volufeeds and other disposable type bottles from stores. Since she was eating better with those before, maybe she'd go back to that. No such luck. She got even burpier and when she burps, she spits up.

So back to the baby aisle we went, looking for bottles that help with gas and reflux, since those seem to be her big issues. We landed on the Playtex Nurser Drop-Ins. 

The disposable liner was kind of my favorite part about it. I really wanted them in the beginning but it didn't seem very practical for the costs of all the liners for 2 bottles so many times a day, when we could just wash and sanitize the bottles ourselves. Being preemies, the twins will be eating newborn style (many times a day and overnight) for many many weeks, so that would be a lot of liners.To get Amelia to eat though, we figured it would be worth trying.

And it worked. For a little while.

We finally went to the doctor who gave her zantac. Finally, all the stars alined and she started eating better. Still not eating great, she still is a difficult child to feed. She will punch and kick and scream when you put a bottle near her. She still spits up, but not nearly as much. The big test that she passed was finally gaining some weight.

So do I think the bottles did the trick? Do I think the Nursers are a part of Amelia's success. Yes, I do think she prefers those bottles, the nipple, and flow of things. Maybe it's because she nurses too and these are supposed to minic breastfeeding so she's just more comfortable with them. I don't know. The easy clean makes them pretty nice for me. But they're expensive. And we go through a lot of liners.

The VentAire was supposed to have a lot of the same benefits, but the small nipple, and the flow didn't seem to be up her alley. The other big issue with those is they get messy. Please tell me if I'm using them wrong but when you remove the little plastic piece on the bottom to let the air out, you can't put the bottle down. So when you need to burp the baby, adjust them or do anything that requires you to put the bottle down, it leaks everywhere. I've read reviews that there are certain tricks to this, but I can't get it to work. So we put it on the side, but then it rolls off of chairs and nightstands. So things got very messy. Also, apparently it's supposed to eliminate the need for the baby to burp mid-feeding. I don't know if Amelia just likes to burp but she ALWAYS has to burp, regardless of how and what bottle we use. We still give those bottles to Jackson and we actually just leave the plastic piece on, don't do anything special for him. He is totally fine with it, but I think he'd do whatever he had to do to eat. Boy loves his food. They're like night and day with their eating.

So parents, any advise to help Amelia eat better? I'll try anything at this point. She's eating now, and getting what she needs, but I'd love to avoid the fighting and arm workout it is to get her to eat.

Princess Party Pants

Amelia will probably hate me for this when she gets older but I think it's funny and it'll be funny to look back on.

And when I have a snotty toddler, I can have proof she was born that way and it was none of my doing....well sorta.

Princess Party Pants is Amelia's new nickname. We've been calling her princess for awhile. Baby girl likes to get what she wants, when she wants it. If you think you're stubborn, this girl will out stubborn you. You think you're patient enough to hold the bottle in her mouth until she eats? Well she's stubborn enough to not swallow until you do what she wants. She'll let every drip fall out the side of her mouth. Quite the princess she is. I see a lot of time outs in her future.

So the party pants started out as a gross joke about some majorly stinky diapers (breast fed babies don't stink? We'll blame it on the 1/2 tsp of formula they get to fortify the milk and add calories). But we combined the nicknames to make one big super PPP nickname one evening when baby girl was out of control.

Ok she can't get that out of control, she's -1 month old. She can't even lift her head by herself for more than a few seconds. But one night after 2nd dinner, as we like to call it, Mia was WIDE AWAKE. More awake than I've ever seen her. We thought she might learn to walk that night because she was ready to hit the town! Her eyes were open, she was throwing her head around everywhere to look at everything, she was laughing and dancing in her car seat. Her uncle Jonny came over to say hi before he went out and he debated taking her, she was ready for the party. So then we said she had her party pants on whenever she got awake and wild.

Put the 2 together, and you have one wild and crazy princess party pants. I've decided I should start marathon training now, since that will be the only way I can keep up with her in a few months.

Her sweet brother, so laid back. So calm. He stares at her like she's nuts. I sometimes have to agree. She has personality though. But when she's an out of control toddler, you can't say I didn't warn you.

Baby Video

A little video I made for the story of the twins from the beginning til they came home from the hospital :)

Whole New Babies

They were born too early and were way too small.












But they've grown so much over the past few weeks. They weigh more than double their birth weight and have grown more than 4 inches each.









 They're now close to the length of some full-term newborns at 18-19 inches.

I admit, there were days I didn't think they were big enough to survive. At only 10 days old, they could both fit so comfortably on daddy's chest.

And now, holding both of them together is a challenge.


They look like completely different babies, in only 9 weeks.

I can't wait to see how big they are in another 9 weeks!

Life At Home

After the challenging days I typically had at the NICU, a day in the life at home is pretty wonderful, I must say.  There are still challenges, doctors orders, and nurses pricking their feet for blood, but most of the time, it's just relaxing and wonderful.

My favorite part is obviously going to sleep and waking up next to these 2...

So what is a typical day like?

Well the twins are still eating at least 6 times a day, predominantly from a bottle (blah). I am still doing the nurse, bottle feed, then pump routine for every feeding. They've gotten better at nursing but they still just can't get an entire feeding from it. Even when they nurse really well for 10-15 minutes, they'll still take almost an entire bottle, which makes me think they were a long way from full before we started with the bottle. It's gotten a little discouraging but I keep reminding myself that they still shouldn't be born for 3 more weeks so it's ok that they're not pros at everything yet. The important part is that they can do it, and once they get bigger and stronger, they'll be able to go to nursing full time. That will be a very happy day!

So when they're not eating, they're sleeping. Alot. Which is good, because that means they're growing! Jack has gained almost a pound in just the short time they've been home. Mia would probably have grown if she didn't have eating issues.

It seems like almost daily though they're awake a little more and more. It's nice seeing them awake and looking around. They're so curious about what's going on around them even though they can only see a few inches away. Last night was the first discovery of a toy. Amelia was fascinated with a little toy I hung on her car seat. I pull the ring down and it vibrates and moves and her eyes got so big, she had no idea what to do with herself. She's going to be an entertaining kid when she gets bigger.

We've had a few rough spots on our time at home though...

Amelia, who was never the best eater, decided about 3 days after being home, that she had had enough of food. She was eating close to 2oz before and suddenly, getting an ounce in her was rough. And what we did get in her, she would throw right back up. We started keeping her sitting up when she was done eating to try to keep the food down. Since we don't have a lot of baby things in Pennsylvania and don't want to buy a lot, we keep her in her car seat. She doesn't complain too much ;)

We took her to the doctor and he thought trying zantac might help. Jackson was on that when he was taking steroids and he didn't miss a step in eating. We tried it, and Amelia started to eat again! She's back up to 2 1/2oz and hardly ever spitting up! We still keep her sitting up for about 30 minutes after she eats, and don't do anything really upsetting to her until it gets close to the next meal (bath, changing her, etc), so things have turned a corner. She didn't gain any weight the first week she was home so I'm hoping on Monday at the next Dr's appointment, she'll have put on her weight.

Her brother, Jackson, would eat a gallon if I let him, I think. He will eat anything that gets in his path when he's hungry. He even tried to suck on my nose once when I got too close to kiss him when he was hungry. When he starts crying and looking for food hours before he's supposed to eat, I always tease and say he'll learn to walk so he can go find his own food and doesn't have to rely on me. He eats 3oz every feeding, easily, I keep giving him a few mL more and more and he keeps demolishing it. So he might be eating more than I pump very quickly here.

We have doctors appointments and a home nurse that keep up busy and keep up with their medical needs. They get weekly lab work, Jackson to monitor his sodium because of the diuretic and sodium he takes, and HNH for both of them since they are anemic. We give them both vitamins with iron and fortify their breast milk with Neosure to get more iron and other vitamins in them. Overall, everyone has been happy with how they've been doing at home.

We also have taken a few trips to not crowded places so we can get out. We take a walk every day, we've taken them to the dam where we got wedding pictures taken...

can't believe that was just in October! and we went to the school by our house to play in the playground. I used to go there all the time to play when we were kids, but the playground has gotten a major upgrade since the days when I went there.

We went out to eat a few local restaurants. The nice part about where I live is that things are pretty rural and quiet. In one restaurant we were even in a room all by ourselves so we didn't have to worry at all about people coming up and touching the twins, but it was still nice to go out and get out of the house for something other than a doctor's visit. Their favorite outing was probably to get ice cream...yummm!

I worked at this ice cream place in high school. So strange going back to all of my old spots, but this time, as a mom!

The twins have had a few visitors to stop in and say hi. A few family friends came up, some of them not even knowing the twins were home, just making their usual stops by the house or coming up to pick some fruit and the twins were there so we let them say hi. My great aunt and her daughter came by to see them.

 I'm sure alot more family will come to visit before we head back to California, but for now...the twins enjoy just hanging out with their uncles most days.

So that's our days for the past week and a half. Tom has been here but he's leaving again to go back to California. The next time we see him, he'll be here to help get the twins to California and we'll finally be all together again and settled in our new home!

On our agenda for next week is another appointment with their pediatrician for vaccines so I'm sure it'll be a stressful week being on the look out for any bad reactions. And they have a follow-up with the eye doctor to see how things are going. We're hoping Mia has grown out of some of her retinopathy and won't require any treatment for it...fingers crossed! Keep the twins in your thoughts and prayers. Although they are doing better, they are far from being out of the woods yet.

Week 8

I guess this will be a pretty big weekly update ;)

So our week started out just like any other, we didn't really have a go home date and it really depending on Jackson gaining about 100g. Well...he did that in 2 days! He went from 1700g to 1800g from Wednesday to Friday! What a champ! Because he gained the weight, they were able to cold stress and car seat check them over the weekend...which lined us up perfectly for an exactly 35 week discharge! I really didn't think it would happen. I actually avoided telling anyone that Tuesday was even a possibility because I thought I would jinx them!

They did everything great though, gained weight, ate great, kept up their O2 and heart rates and discharge went really smoothly.

As if that wasn't enough good info, we found out Jack's brain bleed actually resolved itself! Hopefully it won't lead to any long term damage but it could be a few years before we really know. We just have to keep an eye on his development.

Monday night before the twins discharge I got to spend the night at the NICU and take care of the twins ALL BY MYSELF! Yikes! Not going to lie, it was pretty rough. Feeding them is still quite the job. Jack needs oxygen so there's that to take care of, as well as a few medications he still needs for his lungs. Then I nurse, bottle feed, repeat for baby #2, pump, clean up and then sleep? ha. I didn't sleep Monday night, that's for sure. Luckily, they're eating about every 4 hours now so there are some breaks but when I'm by myself and have to do all the changing, dressing, bathing, etc....well that takes up the free time! They'll keep getting better and better at eating though and I have my mom at home with me now and she's been a huge help taking a baby to bottle feed so I can move on to the next one.

So they came home Tuesday afternoon, at exactly 35 weeks. Woohoo!

We didn't get a lot of time to "get used to them" and stay at home, because first thing on Wednesday we went to the doctor, per the neonatologist's orders. After that, home nursing came by for a check-up. So Wednesday was a busy day, and another stressful day for the twins. But they did great! It wasn't so bad getting them packed up and in the car for the doctor's appointment. Both the pediatrician and home nurse said that, for their gestation and their age, they look amazing. They also grew in just the day they were home! Mia came home weighing 4lbs 8oz and was 4lb 10oz according to the home nurse. Jack came home at 4lbs 3oz and was 4lbs 6oz for the home nurse. Length wise, Jack is 18 1/2 inches and Mia is 17 1/2, so they are both growing great. The doctor showed me the growth chart and naturally, they don't even come close to where the average 2 month old should be, but he said by 1 year, a lot of preemies catch up. So we shall see!

The twins aren't allowed to get out much, they need to stay home so they don't have lots of people touching them, but I did take them to my brother's basketball game. I figured it was safe since it was outdoors, they could be in their stroller the whole time, it was at a park so we could always go walk around and there aren't usually many people there. A few people we knew came up and looked at the twins but I was happy no one touched. Everyone who came over to say hi knew they were preemie and tiny and didn't expect to hold or touch them. So overall, it was a great first non-doctor outing for them!

Their basketball outfits. Jack doesn't fit his Jordan's just yet but he's getting there ;)

Tom is finally coming today! We're all so excited! I think my mom will enjoy a break from the feeding when Tom can take over ;)

So that was our week! Very busy! Lots is going on but so far, things are great at home and the twins look better and better everyday! :)

Growing Babies

 Growing babies make me smile :)

 

 2 1/2 weeks old

 

 8 weeks old

and we're...

HOME!!

54 days after the twins were born, they're finally home sweet home!