One year down!

Just a few days ago, on October 25, the Tiny Mighties turned one. Their Aunt Lynda came for a visit. We smashed cake, played and tried to eat wrapping paper and were overwhelmed with new toys.

Cameron is wearing blue icing, Wyatt yellow.

I went back and read the labor and delivery story again. When they made their dramatic entrance into the world, I had no idea where we'd be at this time. There are many ways our story could have gone and lucky for us, it took the happiest path possible.

These boys are such a joy to have. Babies don't get any better than them. They babble to each other, babble to us and to anyone willing to listen. They're blowing raspberries and are learning that if they say "mama" that I'll come. Just this week, we've added motorboat noises.

Their adjusted age is almost 9 months. They're army crawling and experimenting with crawling on all fours. It's difficult to learn on slippery hardwood floors.

Wyatt loves to climb. His favorite thing is, while I'm sitting on the floor, to grab a fist full of my shirt and pull up. Once he's standing straight up, he goes up on his toes and screams in delight.

Cameron loves to flip through books. He turns a page then looks at me for an explanation. Then goes to the next page and again, looks at me.

They love to people watch and are incredibly observant. I have two smart little guys. They're eating solid food if it's pureed. Turkey and sweet potatoes are a hit. And they love their oatmeal.

They're really enjoying life and I can't imagine a life without them. Happy birthday to my super heroes!

Awkward noggin

The Awkward Noggin.
Sounds like a pub.
I'm willing to negotiate terms if someone wants to buy that name.

I'm actually talking about Cameron's head. We've been doing physical therapy on both of the boys for left side torticollis. Basically some muscles on the left side of their necks are stiff and/or shortened and possibly stronger than the right side of their necks. Wyatt is very mild. Cameron is classified as mild to moderate.

So the past few weeks I've been wrenching on them pretty good, thirty seconds at a time, three times a session and three times a day. The therapist calls it 3-3-30. I've learned how to work in a stretch as I carry them to the changing table. Or to hold them so they work on strengthening the other side of their neck.

All of this came to my attention because I was concerned about flat spots on their heads. Torticollis hadn't crossed my mind because they could turn their heads both ways just fine. And I'd been doing all of the things the NICU said to prevent it.

They got it anyway.

Well, the good news is that today, during their appointment, the therapist could find absolutely no signs of torticollis! Their neck strength was fairly even. They turned their heads far enough and equally. Nobody is tilting their head towards their shoulder. They're reaching for things like they should. In fact, my boys who are 5 months adjusted age are acting like 6-7 month olds, minus sitting. I have such smart strong boys!

Their flat spots are improved as well. And I learned how much their reflux has played a part in this. Both of them have flat spots on the back right of their heads. The physical therapist told me that a baby's stomach isn't shaped like an adult which is a reason babies will get reflux. When they get pain from reflux, they'll arch their back so they can elongate their stomach and esophagus which helps the reflux. If they're unable to arch their back, they'll turn their head to the right and tip their chin up in order to elongate things. This has been how Cameron has slept for a while.

By the way he moves and rolls, the therapist can tell he still has trouble with his reflux. It also explains the latest struggle.
Both can roll from their backs to their stomachs. Cameron is quick to roll to his stomach. Then he gets tired, turns his face red and screams. But he refuses to roll to his back. If I roll him to his back, he gets upset at me and soon rolls back to his stomach. Where he gets mad again and it starts all over.
The physical therapist explained to me that him being on his stomach also elongates his esophagus and stomach and is another way for him to help his reflux. Ah!

Interesting, right?

Cameron has always had the more sour tummy. While in the NICU, it took them much longer to get him to tolerate his food. Wyatt was fed by gravity through his feeding tube and didn't have a problem. He'd take it as fast as they could give it. In fact, when he did have a problem with a feeding, I knew something was wrong and we found out he was so anemic that his GI tract was shutting down.

Cameron had to be on a timed pump for a while and they had to set it for as long as it was possible. It took 90 minutes to feed him so he wouldn't throw up. And sometimes he'd still throw up.
It would not surprise me at all if his reflux is worse than Wyatt's. Which could explain why his flat spot is worse than Wyatt's.

Anyway, the therapist was incredibly happy with their improvement. In two weeks I've managed to get them to the point that they thought would take four or five weeks. Yippee! With all the repositioning I've been doing (seriously it's annoying because I'm constantly turning their heads a direction they don't want), both of their head shapes have moved closer to round. Two millimeters closer, in fact.

But...

Cameron needs a helmet.

He has a ridge on top of his head that only a helmet could put pressure on and help "pop" the bone back out. His ears are also out of alignment, which I've known about and why I've been obsessed with his head shape. We discussed waiting a week or two but I'm of the opinion that I'd rather go ahead and get him in a helmet. The sooner we do, then the shorter amount of time he'd have to wear it and the more effective it'll be. Once the sutures of his skull close, it's really hard to correct the flat spots. He has enough strength to handle the weight of the helmet and his motor control is good enough. With the asymmetry of his head, it could put his jaw out of alignment so it's more than cosmetic. Lets just get it done, I say.

This afternoon I put in a call to his pediatrician who'll need to write a prescription for it. Then we'll see an orthotist about the helmet. Poor guy but hopefully it'll be short and sweet. And he could headbutt Wyatt to get back at him for all the times he's been pinched!

They go to the physical therapist again next week to make sure their improvement isn't a fluke. And I'll continue to stretch them and reposition their heads (Cameron fights me turning his head so much!). I think Wyatt will be fine without a helmet.

So again, mommies and future mommies- you are your child's advocate! Their pediatrician is fantastic but even still, he and his staff only get little snapshots into their lives whereas I'm with them every day. Be reasonable but don't be afraid to speak up. I certainly wanted to take an aggressive approach to the flatspot I've been watching on Cameron. I had this nagging feeling that I needed to and I'm glad I have. And their pediatrician is so good at listening to parents' concerns. That's truly important. Parents and the doctor are a team!


In other news, they had surgery three days ago for hypospadias.

All dressed and ready to go for surgery!

It was mild and an easy repair which requires circumcision. They should go on to have normal function and lives. No other surgeries should be necessary. This is common in babies born as early as they were.
The post anesthesia rage was pretty impressive.

Look at post surgical anger. We were waiting for the pharmacist to fill their pain prescription. I can just see the hate in his eyes.

"You are so getting it when we get home". And boy did I!

They got their pain medicine. Wyatt just stared out the window with a blank look for a while. Probably trying to forget about his day. Here is Wyatt on drugs-

In about 24 hours they were back to their normal happy, smiling, giggly selves. And Wyatt, the little punk, has peed on me just about every time I change his diaper.
One reason is that it takes longer to change his diaper. I'm having to do the post circumcision care with vasoline and a neosporin type medicine.
Another reason is that I can't deflect him with haste. I have to be careful with what I choose to block his aim with. I don't want it to stick to him. Also I don't want to touch his wounds to avoid risking infection.
And lastly, it's all new plumbing and I think his urologist turbo charged his bladder. I've been hit in the face even. Wyatt giggles nearly every time.

It's a good thing he's cute.

Physical therapy and a party

The boys are doing fantastic. Their checkups have gone well. They're gaining weight like they're supposed to, acting their adjusted age and in some ways, slightly ahead. They're currently 7 months old with an adjusted age of 4 months. All of their milestones are based off of their adjusted age.

Wyatt has been very interested in solids. Cameron is as well but not as eager as Wyatt. I did try a bite of some avocado with them and they did okay all things considered.

Both of them have excellent head control and can roll over. They can sit up if you support them at the waist. Their jumperoos are their favorite toy to play with. They also love water (as long as it isn't too cold!).

They've been living the life though and growing, growing, growing! Cameron is 13 lbs now, Wyatt is 14 lbs. We have a great time.

They enjoy their books

We go hiking

We sit on the deck outside and enjoy the fresh air

We look super cool out at the pool

The jumperoo is a favorite

And I've dabbled in face painting

The last few checkups I brought up flat spots on their heads, Cameron's being worse than Wyatt's. The doctor kept saying they'll grow out of it, but I kept mentioning it. I was concerned and would rather start working on it sooner than later so he gave me a referral to a physical therapist.

Yesterday was Cameron's evaluation. The appointment was at 3:30pm and lasted until about 5pm. The evaluation is a long appointment! I'm glad I didn't schedule the boys back to back. That would have been some cranky babies!

The physical therapist noticed some stiffness in Cameron's neck on the right side which is giving him some decreased range of motion turning his head to the left. He prefers to sleep with his head turned to the right and now we know why. I've been going in at night after he's fallen asleep and turning his head to the left. He stays that way until he moves and he goes right back.
Babies should be able to turn their head to where their chin is over their shoulder. Cameron is fine going to the right but to the left, he has about 20 degrees of turning he lacks. He also tilts his head slightly when I lay him down. I always thought it was him being cute, but it's a symptom.

His official diagnosis is torticollis.

With him being a NICU baby, a twin, premature, the reflux, it's all added up, so she says. Basically she was telling me I'm still a good mom, haha! She could tell I had been trying to work on it by the way he acted.

Once he reaches 6 months of age, if his head hasn't improved, then they'll recommend a helmet. Until then, she gave me some stretches to do with him. I need to do a few changes on how I hold him to get him to strengthen the other side of his neck. He has three physical therapy sessions scheduled where we'll see if his therapy is helping.

While this looks like two babies on the floor (Cameron is in the grey pants), it's part of his therapy. Putting him on a harder surface with his head turned acts like a helmet to help even out his head.

When he turns to his left, sometimes he tries to look up to accomplish this. That's cheating. In the picture, he's cheating a little. He can turn a little bit more than in this pictured, but he's definitely stiff.

Wyatt's evaluation is scheduled for next week. His flat spot isn't as bad but it's similar to Cameron's so I'm expecting his therapy to be the same. The actual therapy appointments are short enough that they can be back to back so it'll just be one trip a week.

This isn't anything major, especially compared to what they've been through already. But I'm glad we're addressing it.


Our neighborhood was so supportive, so we we threw a small little party for them. They got to meet the boys, have some cupcakes and chat. It was fun and the boys even received some gifts! Everyone is so kind. We can't even begin to explain how much we've appreciated it.

I put some of their NICU items in some shadow boxes, made cupcakes, made little cupcake toppers, and just had a ball. We kept with the superman and batman theme.

And the cupcakes were delicious!

Tiny but mighty twins-Still mighty, but not so tiny

As you can imagine, the boys have been keeping me pretty busy. But I'm sure you want a picture.

Bam!

Yesterday they turned six months old. Their adjusted age is 11 weeks. Their last weight a few weeks ago was 12 lbs each! Wyatt (on the left) is about half a pound heavier than Cameron (on the right).
They love to smile and play peek-a-boo. There's been some giggling too. They can hold their head up pretty well. They love faces and mirrors and they love to sit up so they can see what all is going on around them. The chairs pictured above are kind of a step before going to an "exersaucer". It supports them but lets them work on their core and neck muscles while sitting up.

And we have a milk thief. This is the start of something, I'm sure.

Pictures are fun. Here's more!

Wyatt on the left, Cameron on the right.

Cameron

Wyatt

Such handsome little boys!

Things they hate- tummy time. Beyond just a little frustration. I'm talking, in a minute, we have dolby digital surround sound screaming. Even if I lay down and put them on my stomach. So I'm trying to work around that.

And we've had a lot of reflux but it's getting better. It's common for preemies to have it and usually worse than full term babies. We had to come up with some pretty interesting things to battle it. First, of course, medicine. Their pediatrician prescribed prevacid. We also burp them really well after eating and keep their head elevated for half an hour after eating. Vitamins are tricky but we've figured that out. They're most comfortable if I give them half a dose in the middle of their meals twice a day. A full dose at once results in arched backs and screaming and it breaks my heart to see them hurting. I'm so glad we figured that out.

They had to sleep in their rock and plays for weeks before I figured out how to get them into their cribs. I tried stuffing a pillow under one side of the mattress to keep their head elevated. I'd check on them in a while and find they had rolled down the mattress. Hardly safe.
So one day I made a "bendy" like what they had in the NICU. It didn't have a rod through it to help it hold its shape, so I had to pin it down. But it's basically a stuffed tube that's about 1-1/2" in diameter formed into a u-shape. It came up to their armpits and I would sit their butt against the bottom of the "U". This kept them in place. We have Owlet monitors so if any funny business went on, we'd be alerted. But this worked and they were able to sleep comfortably and on a mattress instead of the hard rock and plays. We've been battling flat spots on their heads ever since the rock and plays.

But now their reflux is controlled enough, or they've grown out of it enough, that they're on a level mattress! I'll be talking to their doctor about whether or not they still need the medicine. It's strawberry flavored and Cameron hates it. He's going to be our picky eater, I think. Wyatt eats everything you put in front of him. Cameron takes his time. He'll be the one everyone is waiting on to finish his plate.

Another preemie thing is hypospadias. It's mild and not a big deal, but does need to be corrected. They have surgery for it towards the end of June. There's a certain age where anesthesia becomes much safer for them so we've been waiting.

Preemie thing #3. Their ROP has completely vanished!! Cameron had been seeing a retina specialist because he came so very close to needing surgery to prevent blindness. But he started improving and now their eyes are both fully vascularized and don't have any ROP.

We've been doing good though. We have our routine down. We're busy of course, but we've figured it out. So far. Once they get mobile though...

I've had enough time to have a hobby or two. I've got our garden going. I usually do one every year and had figured not this year. But then I realized they'll be doing solid foods about the time the garden would be producing so home grown food would be so good for them.

I've also started to crochet octopuses for preemies. Some of the hospitals around here use them in their NICUs to help the babies. I'd love to introduce them to the NICU the boys were at, but I'm short on time these days. One of the nurses there loves to crochet and I think I'll work on convincing her to be the ambassador, then I'll just make the octopuses. I usually work on them at night about a half hour or an hour before bed. It helps me wind down while helping other preemies.

But I had to find someone with the right experience to test the tentacles and make sure I was doing it right. Wyatt has the experience and says they're perfect!

The boys are stirring and ready to eat so I better close. We appreciate all the support from friends and neighbors. Gifts, food, it's all be so wonderful.

Life with twins

In the past two and a half weeks since the Tiny Mighties have been home, I've managed to pick up my laptop one other time. My apologies for not updating sooner.

While the boys are enjoying being boys at home, we do still have some preemie stuff to deal with, mainly their eyes. They've been seeing their eye doctor once a week to follow their ROP. Wyatt has been approved for follow up every two weeks because his eyes are doing so well. He's still stage 2 but it's getting better every time they see him.
Cameron, unfortunately, has a date with the retina specialist later this week. His right eye looks the same as Wyatt's, but his left eye has gotten a wild hair and is at stage 3 and "pre-Plus disease". Plus disease is when they treat his eye with a laser surgery. And the laser surgery requires him to be under anesthesia which requires him to stay in the hospital overnight for observation.

Last week, on my first day home alone with them, I took them to the eye doctor. I like our eye doctor. He's not arrogant and isn't afraid to call on one of his colleagues for a second opinion. This did translate into me pushing a stroller out of the doctor's office at 11:30 pm, running home to feed the now cranky and hungry boys before dashing off to get that second opinion 30 minutes away for a 1pm appointment.

We made it on time and it was a scary appointment. It was basically an appointment to decide if Cameron was going to need eye surgery the next day or not. They decided not. He'll see a pediatric retina specialist later this week and they are the ones with the final say.

Both met their pediatrician. They liked him until he took them out of their blankets to look at them. We had to strip them down to their diapers. Once the cold air hit their skin, their opinion of him changed. We learned a lot about "normal" baby stuff. The discussion was a mix of normal and NICU things. They were weighed and measured. Then a week later, I took them back for another weight check which they passed with flying colors. They're close to 7-1/2 lbs now!

Grandma and Grandpa came to help and finally got to hold their grandbabies. They met them while they were in the NICU, but rules were that only parents can touch the babies. Visitors can only look. But last week, the Tiny Mighties got snuggles from them and we got some extra sleep!

Life with twins-
It's busy. The boys don't like schedules. Sometimes they want to eat every hour and a half. Sometimes it's two and a half hours. Sometimes it's three and a half. You never really know unless you've just sat down to eat. That always wakes them from a deep sleep and you'll get no peace until they've eaten first. So we're learning to eat hot food cold.
My husband and I have the night split into shifts. I take the first shift then at one or two, depending on how early he has to be at work, he takes the second. That way we can get a four or five hour stretch of sleep.

We're still working on nursing. They're doing okay. Preemies come with issues namely stamina and being very particular about their latch. I must be pretty cuddly because they love to drift off to sleep when I hold them. This sets them up for all day snacking and if two babies decide to snack all day, then Mom will soon need a straight jacket.
I've tried changing their diaper when they've gotten sleepy to wake them back up. With their reflux though, they turn into milk volcanoes so that doesn't work.
With latching, it's got to be perfect or they refuse to nurse. This can take a while and if they wake up close to the same time, things go awry very quickly.
I've settled for just doing what we can, switching to bottles if we need to and just letting maturity work those issues out. They get breast milk either way and as long as they get what they need, I'll be happy. I don't *have* to nurse them, but it would be a little more convenient.

We've mastered feeding them one at a time or at the same time. I've got a nursing pillow (pictured below) called the Twin-Z and it and a pair of rock and plays have been life savers. The pillow is good for feeding them at the same time or for a safe place to put them. And of course, for nursing them. It's like two boppies put together.
They've been sleeping in their rock and plays at night. Their reflux has been bad despite being on Zantac and the rock and plays hold them upright enough that they are mostly comfortable. They're considered a safe place for them to sleep plus we have Owlet monitors on them. Laying them in their crib gets you screaming babies. I tried stuffing a pillow under their mattress. I can get the amount of incline they need, but they end up rolling down the mattress. I found Wyatt completely sideways and Cameron had wedged himself into a corner. So the rock and plays will do until their GI tract matures a little.

The dogs are curious about the new "puppies" and they're allowed to sniff them. They've snuck a few kisses here and there. Their tails wag when they sniff them and every day, both go into the nursery first thing in the morning or on their way to bed at night to see their new family members. They've done really well with being respectful. The first day, the dogs were pretty unsure of the screaming "puppies" but seem to have accepted them.

Well, this post has gotten long. We're taking our pediatrician's advice and keeping their exposure to new people and places as low as possible for the next two months.
In a couple of days I'll have more news about Cameron's eye. Until then, here's a pic of the boys and one of their dogs, Giuseppe. Wyatt is on the left, Cameron on the right.
Take care!

Coming home

Yes, both of the cribs the Tiny Mighties called home for nearly 3-1/2 months now sit vacant awaiting their next patient. The boys have come home! Both of them on the same day! The NICU says that's happened only one other time with twins.
Originally it looked like Wyatt would be home a day earlier than Cameron. But when I told Cameron that his brother would meet his puppies before him, Cameron got on the ball.

They were surprisingly patient while waiting in their car seats for discharge instructions. Wyatt decided to take a nap.

Cameron waved bye-bye to the NICU

Not only is it rare for twins to go home the same day, it's also rare for babies born at 25 weeks gestation to leave without requiring oxygen and before their full term date. They beat that date by 3 days!

The only thing they take is a fortifier that I add to breast milk for at least half of their feedings and a multivitamin.
We'll be busy running them around to their appointments. Being so premature, they need extra close follow-up. They have to have their eyes checked once a week until the doctor says their eyes are matured. They'll have physical therapy to make sure they're developing and meeting their milestones. And, of course, their pediatrician.

We're eager to show off our boys and we want them to meet everyone. However, they are premature babies and their immune system is even less developed than a full term newborn. So we would like to postpone visitors until their pediatrician gives us the okay.

We're so grateful for a pair of awesome boys, a wonderful NICU (it was hard trying not to cry while leaving our "second family"), and all of our friends, family and neighbors who have helped us through the most stressful journey of our entire lives. From the bottom of our hearts, truly, thank you.

Ad lib

A few days ago, Wyatt got the go ahead to be in charge of his feedings. He is to wake up and tell us when he's hungry. Of course, we don't let him go more than 4 hours. But this is a big step. This is a "going home" step.
They both have been working hard on feeding by bottle or nursing. Once they start to eat 75% of everything by mouth, they go ad lib with feedings. Cameron is at 71%.
So close.

Then they have to do 48 hours of ad lib feedings without losing weight. And since they're off oxygen (yay!) and their ROP is regressing (yay!), feeding by mouth is the only thing keeping them in the NICU.

Well, Wyatt has been doing well with feeding ad lib. And while we have been talking about going home and things, I wasn't really prepared for today.

"In the next few days, you need to bring Wyatt's car seat in for the test," the nurse said.

The car seat test is this-
They feed the baby and then put them in the car seat for 90 minutes and monitor for them to desat.
The car seat is done about two days prior to being discharged.

This means Wyatt is going to be coming home soon.

Que minor anxiety attack.

And Cameron isn't far behind.

It is the greatest and scariest gift ever.