Snow day, lazy day, but not without changes

I woke up to a blanket of white snow on the ground. 

No, scratch that.

I woke up to my alarm going off at 3am. It was time to pump. Though I don't have any newborns at home, I do have to keep the feeding schedule in preparation for when they do come home. So I have a hospital grade pump and a demanding newborn-like schedule with waking at night to feed the breast pump and I'll have this schedule until March or April, when they're likely to come home.

At about 3:30am, I looked out my bedroom window and had a brief spike of excitement seeing the snow covering the ground. It quickly abated though. I couldn't go and see my Tiny Mighties today. Since I was born and have lived in Texas all my life, I haven't learned how to drive in snow and I wasn't about to attempt the mountain climbs required to get to the hospital. The last time it snowed, my husband had to skate our shiny pretty car down from the hospital and we prayed for green lights. Today, it snowed and snowed and snowed. It never stopped. I've never seen so much and I decided I'll just take today off.

In the nearly 5 weeks they've been in the NICU, I've only missed one other day because I had a funny stomach thing and wasn't sure if I was getting sick. Turned out, I was fine. Their immune systems are so immature, I didn't want to chance getting them sick. 

It felt weird not having anywhere to go. I stayed in my jammies and started making some Christmas stockings for the boys. About the only way I can knit is with a loom and I've taken on a rather time consuming pattern. The yarn seemed to want to do nothing but tangle so most of my day was spent untangling yarn. I managed to get 15 rows of red and white stripes that will be the top of the stocking. One will be red, the other white, or so I plan. I'm really bad about starting these projects and not finishing them.

I placed multiple calls to the NICU to check up on the Tiny Mighties and they're doing their thing--soaring above all obstacles.

Cameron decided he was through with High Flow oxygen and is now on nasal cannula. After nasal cannula, he's free from needing oxygen. Due to the altitude where we live, they'll both likely go home on oxygen using this nasal cannula. 

The nurse said if he keeps it in place, he does fine. He's been managing to move around enough to knock it off his face. They're working out a way to make it stay put. 

But wow! He was born at 25 weeks and has beaten a baby born at 28 weeks to the nasal cannula. I'm telling you, these boys are a force of nature!

Wyatt decided he was through with the NIPPV and has gone down to CPAP. Then he decided to wean down to the point they're already talking about moving him to High Flow. It'll be a couple of days most likely. His nose looks great, no redness noted and the nurse has been placing a protective tape over his nose just to make sure what happened to Cameron doesn't happen to him. It's clear so they can see his skin though it. He can cry but since he's been on a ventilator for so long, his vocal cords are a little swollen. Apparently he's not as loud as Cameron is, but it sounds like he'll get there soon enough. I can't wait to hear his voice. Neither of us have ever heard him cry. 

When he was born, I remember them saying he was crying but I couldn't hear him.

So yeah. They're kicking butt in the NICU like the super heroes they are!

Standby-Patient not ventilated!

We have so much to be thankful for this year.
I'm a day late, almost two days late on this post. It's about eight thirty at night and Thanksgiving was yesterday. Our Thanksgiving feast was last weekend while the Tiny Mighties' grandparents were visiting.

We have great friends and family who have given us such wonderful support. They wonder where we get our strength from when they're the ones who help keep us strong.
We have wonderful neighbors who barely know us but treat us as if we've lived here twenty years whether they've met us already or not.
We have strangers who we've never met, will likely never meet, who have donated money to ease our financial burden.
We have each other. One's weakness is another one's strength. And while I like the pie filling, he likes the crust. Doesn't that work out perfectly?
We have two little boys who are giving it all they've got to be here and become big, fat healthy babies.
They're in a NICU who have amazing expertise and a staff that treats our boys like someone special to them.
We have a roof over our heads, food in our bellies, full hearts and two babies that are currently feeling good enough to fuss at us over their diaper changes.

The doctor had talked to us about wanting to get the Tiny Mighties off the ventilator as soon as possible. She felt it would be soon.
"Even Wyatt," we asked and she nodded.

We walked in today just as Cameron was giving the NICU team one heck of a stink eye. He'll close one eye and glare at you with the other as a warning.
Today, they took away one of his machines!

They had just pulled out his breathing tube and his lungs are doing so well, he skipped CPAP and went straight to what's called "high flow". His nose doesn't get the pressure like it did with CPAP. Breathing is completely up to him, which scares us to death due to his apnea spells. We stayed with him for hours to make sure he was okay. He was feeling well enough to throw temper tantrums over care time.
He likes to hold his breath when he gets mad and waking him up to change his diaper makes him angry. He loves his sleep! Once he holds his breath, his oxygen saturation drops, his heart rate slows, and he makes everyone worry. He does it on purpose. What a stinker.
Sorry, Superman, but you can't save the world with a wet and dirty diaper.

With his cares done, he was allowed to drift back into a peaceful sleep.

Mr. Wyatt had his last day of antibiotics today. I'm so proud of him. His ventilator settings are really low. The rattle in his lungs is still there, but so much better. They think his secretions will resolve once his breathing tube is out.
We had snuggles today. He never did sleep during his snuggles. He was awake the entire time, but it was a good "awake". He was calm and quiet. He'd look around the room, look at his dad sitting next to him and simply enjoyed his time.
Did you know, despite being born so early, he can nearly lift and turn his head? That's why I'm holding his head because if he did that, he could pull his breathing tube out. What a strong little man!

At one point, he finally stretched his arm up like he does when he's ready to go to sleep.

It's another good day. This is the longest stretch of good days we've had and I hope it keeps going.

Way to go boys! We love you lots XOXOXO

One month

My two warriors are one month old today.
For one month, they have made me laugh, made me cry, have brought me to my knees, and have shown me incredible strength.

The little guys have had several good days in a row. Wyatt is off of the nitric. Getting him off of nitric has been incredibly difficult and it had been because of his pneumonia. We've tried to get him off of it so many times that it's become a joke between us and the nurses.
First, we only whisper about weaning him from the nitric just so he doesn't find out what we're doing. And on his goals for the day, we joked about asking him to consider coming off the nitric.
Well, today he's off (but don't tell him yet!).  We'll see how he does.
The antibiotics he's on for the pneumonia has given the poor sweet dear some awful diarrhea which has given him a diaper rash. We've gone through three different creams to try for it before finally finding one that seems to be helping.
Next week, Wyatt will get another head ultrasound to follow up on his brain bleed. He has a grade 1 bleed which is the smallest and usually resolves on its own. It has the smallest risk of causing any long term problems. Hopefully it has resolved.

Cameron has a really nice set of lungs. No really, we've seen the x-ray of them. Now if he would only remember to breathe...
For some reason, Cameron is having a harder time remembering to breathe than Wyatt. The doctor says it's either because of him being premature or because he has some brain inflammation from meningitis, which they are treating. They tried to do a lumbar puncture on him to find out, just as precaution since he has a blood infection. But it was unsuccessful and rather than try a third time, they went ahead and treated him as if he has it. She said it wouldn't be an "active" meningitis.
Anyway, he could probably move to a high flow cannula if he'd just remember to breathe.

So, lets celebrate their one month birthday.
What do micropremie's do for their one month birthday?

Well, you either dress up as a burrito with a binkie in your mouth, like Cameron

Or you air out your fanny, of course, like Wyatt

One month. I can't believe it!

Tootsies in the air

Today, Wyatt is sleeping with his butt in the air. This isn't something he decided on his own. It's to help his diaper rash. The antibiotics he's on are some big guns and they've been giving him diarrhea despite all the probiotics they've been giving him.
But my little Batman is doing well, remaining stable, and making plans to save Gotham from evil.

Cameron is also doing well. They weaned his vent a little and he's still in a happy place. His PICC line is in place to give him the antibiotics he needs. His cultures grew out a gram negative rod, which could be CRE. Since Wyatt has CRE, they're treating Cameron as if he has the same thing. So far, Cameron hasn't shown any signs of being "sick" so if he does have an infection, it's been caught very, very early.

Both boys are tolerating the fortified milk really well. The NICU has a milk lab. They take the milk I pump and add vitamins and calories to it.

Something the doctor told us yesterday is that how well premies tolerate food is a decent indicator of their prognosis. With my boys being able to take their meals, she said that's a very good sign. *crosses fingers*
I want so dearly to hang on to those words, that they can tolerate meals and gain weight gives them a good prognosis. But with this roller coaster ride, I can't help but feel like I'm waiting for the other shoe to drop. Which also feels wrong to do because I want to stay positive. We've had several good days. Where is the top of this hill and how far is the fall? Or have they reached a point in this ride where we can expect a few small bumps but it's smoothed out quite a bit?
Something only the future knows. I want so badly for them to be okay.

Fight on, little boys. Fight on!

Four weeks later

For most, your child is born, they cry as a sign of healthy lungs and then you get to hold them.
For parents of a premie, especially a micropremie like Wyatt and Cameron, the babies are whisked away and placed into isolettes and all you can do is sit and watch them through the clear plastic. They're too fragile to touch. You must wait until they are stable and strong enough to hold.
For parents of a premie, this can be weeks, months even.  Every day, every hour, you watch as they get poked, prodded, and you want so badly to pick them up and cuddle them close so they feel love and not just the sting of another needle or tape ripping from their delicate skin.

Today, nearly four weeks after he was born, the nurse handed Wyatt to me. We carefully arranged all of the lines, his breathing tube, and his feeding tube. He splayed his hand against my chest, snuggled in and drifted off to sleep. I could smell his sweet scent and feel his soft hair tickle my chin. I could hear the rattle in his chest as he breathed from his pneumonia, but I finally got to hold my little boy.

Weeks ago, before I'd started this blog, I got to hold Cameron. And he's enjoyed numerous, what they call "skin-to-skin" sessions. Wyatt had gotten so sick and hooked to machines that had made skin-to-skin impossible. Now he's off those machines and has been stable the last several days. It shows just how far he's come.

So now I've held both my baby boys and I couldn't be happier.

Bringing the awesome

I've seen a lot of chest x-rays. The one I saw today belonged to Wyatt and looked pretty dang good. It looks like he's kicking this pneumonia to the curb. My little Batman is winning this fight!
He's eating well, his labs look good, he's still off The Jet, he showed us his peepers. I mean, can we ask anything else from the little guy?
He's also over 2 lbs. Only by half an ounce, but he's held his over 2 lb status for a few days now. Way to go Wyatt!

Cameron is also doing well. He's actually outgrown his vent tube so I'm sure they'll be switching that out soon. His old PICC line had grown a germ which they believe is contaminant but they have to be sure it's not a blood infection. Since this is the second time, they're treating him as though he does have an infection.
They needed to do a lumbar puncture to make sure he doesn't have meningitis. They don't think he does, but they have to make sure. Unfortunately, after two tries they weren't able to get a sample. My poor guy! But he handled it like Superman would. So they will treat him as though he has it to make sure he stays healthy.
He'll get a new PICC line. More poking, I'm afraid. One day he'll get all the hugs and cuddles he could ever want without any needles.

Today we had some fun. We played with binkies. We put a drop of milk on the binkie and let them try that. Wyatt seemed rather pleased. Cameron wanted to sleep (so much like his mom!). But both of them sucked on their binkies and had a good time.

Hang in there my tiny mighties! You're doing so good!


Wyatt:

A special treat, Mr. Wyatt looking happy about the world:
















Cameron (having a really good sleep):

Wyatt and Cameron meet their grandparents!

Today, the Tiny But Mighty met their grandma and grandpa. Wyatt and Cameron showed them their new room, how they make their monitors beep at each other, and how good they are at making poopie diapers.

Wyatt forced the issue of getting himself out of "Room 1". Room 1 is a big open room with lots of babies and lots of people walking through. Since Wyatt needs isolation due to his CRE, they moved him to "Room 2" which has a bunch of smaller rooms with doors that can close him off from anyone else.
Luckily, the bug is not airborne and so his brother is allowed to come with him. They have a room that's large and can accommodate the both of them and their nurses. So now they're next to each other instead of across the room from each other so it's easier for us to talk to them both.
Wyatt got himself off The Jet today. His lung secretions have improved from "creamed corn" to just cloudy so the antibiotics are working. I can't remember if I updated that he'd gone back on The Jet, but it was expected as his pneumonia began to break up. Kind of like when you get a chest cold. You have a dry cough but then as you get better, your cough sounds wet and nasty as you hack things up. Wyatt is similar only he can't cough.
His labs look great and he's doing great. If he remains stable, we may finally, FINALLY get to hold him this weekend!

Cameron, the poor guy, has to get a lumbar puncture. This is the second time his PICC line grew out a germ so, while they think it may be a contaminate, they've realized these guys like to push the odds and so they're making sure Cameron is okay. I hate, hate, hate that he has to get a lumbar puncture. I quizzed the nurse practitioner pretty good about the whys and what-ifs. I'm tired of my babies getting poked, I guess. But it's all to make sure they can grow into healthy little boys.

So everyone is doing good. Thank you for your continued thoughts and prayers. It means so much to us. These little warriors use them for fuel!

Bug identification

Today, I walked into the NICU and spotted a sign on the door leading into the room where my boys currently reside. It had "STOP", all big and angry with something about it not being a room for people to simply walk through.

Not totally grasping what it meant, I made a joke to the front desk. "Signs on that door are kind of scary." I thought it was hilarious until the charge nurse, who is also one of the boys' primary nurses when she's not charging, spun around in her chair at the sound of my voice.
"Has the nurse practitioner or anybody called you," she asked.
Immediately my heart began pounding. "No?"
"Nobody has called you?"
My heart stopped and dropped into my stomach. "No."
She lifted from her chair and came around the desk. "Okay. Well, we need to talk," she said and began pulling me towards a parent conference room.

I had never been in the conference room. I didn't know they had one. We've gotten some pretty bad updates at the bedside before. Good gosh, what was I about to learn that was so bad that I had to be put into a little room to learn it?
My legs turned to lead. It was a conscious effort to put one foot in front of the other. Immediately all of the worst scenarios played out in my head. My throat went dry and my heart constricted.

The fear of the worst must have registered on my face. She pat me on the back. "Oh, it's okay! Everyone's okay! We got results back on Wyatt's pneumonia and it requires him to be in isolation. He's had a good day. The isolation stuff is scary looking and we need to go over some things. I'll let the nurse practitioner know you're here and she'll update you."
I felt myself take a breath. My weighted legs nearly turned to jello. Had nobody been watching, I would have collapsed to my knees and cried with relief. I was pretty close despite the audience I would have had.

They had taken cultures of what was in Wyatt's lungs and they finally had an answer to what his pneumonia is. It wasn't the best news but it wasn't the worst news.
Wyatt has Carbapenem-resistant Enterobacteriaceae (CRE). Kind of a nasty bug that's resistant to antibiotics. There are two types. One is worse than the other. Wyatt has the better one. Finally a little bit of luck, right?
This is a bacteria that exists on our skin, in our gut, and a normal healthy person can keep it in check. Since Wyatt is premature, he doesn't have the defenses to do so.

But since it's resistant to some fairly strong antibiotics, he's been placed in isolation to prevent it from spreading to other babies, including Cameron. With the cultures, they are able to test what antibiotics will work on it and he is currently on that antibiotic.
The nurses are impressed that he doesn't seem more sick. He's one tough little boy.
I didn't get any peepers today from him, but he's been stable and the little guy needs his rest.

Now, whenever we interact with him or touch any of his things, we have to wear gloves, a gown and a mask. If we're just looking, we don't need those things. This may be for a few weeks or this may be for the entire duration of his stay.

So they're in separate rooms for now, which makes me sad. They loved being with each other in the womb and I wonder if they miss each other. The staff is working with infection disease control to see how isolated Wyatt needs to be, if his brother can be in the same room with him. They were both moved out of Room 1 today which is the most critical care room. Now they're in the low birth weight center. It's more about the ability to isolate him than suggesting they're doing much better. However, it's a bit quieter there and the lights can come down a bit which will help lessen their stress.

As for Cameron, he's doing well. He's been nice and stable and even looked for me today. They are both eating as much as they can with a PICC line in.

That's really it for now so here are some pictures because pictures are always fun:


Wyatt
(the IV on his head infiltrated which is what the bruise is. That will go away on its own)

Cameron
(some tummy time with the Cammy-cam)



Can we get a tube over here?

Cameron is intubated. He didn't take a step backward or anything. His skin started to show signs that the mask put too much pressure on him. And using the prongs was difficult because of his nose. So they couldn't give him the respiratory support he needed with the CPAP.
I spent hours today watching his saturation rates go up and down. Finally I told the nurse that I would feel better if he were intubated. He could get the oxygen he needed, his nose could heal, and he could get some rest.
Hours later, I checked back with his nurse and found they had intubated him which has cleared up his episodes. He had just finished story time (I got some voice recorders and read some Dr. Seuss so the nurses could play it for them) and is all tucked in for the night. He fell asleep to my voice reading One Fish, Two Fish.

We talked to plastic surgery today. Repairing his nose would need to wait until he's 4-6 months old. His nose may try and repair itself since he's so young but it wouldn't look the same as it did before. And any repair could take multiple surgeries. The surgeon was confident that it could be repaired though. I had turned to google and got scared while reading stories from people saying it wasn't fixable. The plan simply depends on how it heals.

Wyatt is doing well. He got a PICC line last night for his antibiotics and has been pretty stable. He was sleepy today so no peepers.

Rest up my sweet boys so you can keep fighting. Mommy and Daddy are so proud of you.

Tiny update: both boys had a great night and got lots of rest!

The 4am Teeter-Totter

At 4am, I woke up as if someone had kicked me. Nobody had done such a thing.

In the dark, I stared at my phone which was charging on my nightstand. I stared at it and expected it to ring.

It didn't.

So I decided to call the NICU to check up on my boys and found out that Cameron wasn't having a good night. He's okay, which is why they didn't call me. But he's struggling. 

I had noticed he was having more A's and B's than usual the day before and was a little bit concerned. A's and B's are when they stop breathing and their heart rate gets low. A=Apnea. B=Bradycardia. This causes their oxygen levels to fall. But the CPAP mask doesn't work as well as the prongs and can explain is increased number of A's and B's.

In the past, when he starts having more than usual, it means something is going on. Last night, the nurse was having to intervene by patting him on the back, moving him around, etc. Anything to wake him up enough to get him to remember to breathe. She's one of his primary nurses which are nurses we've asked to be assigned to each boy when they work so they get to know them well and know when something is "off" but isn't showing in labs or vitals just yet. It's an extra level of protection for my boys. 

She knows Cameron well and knows this was unusual for him. Being a small premie, the part of the brain that reminds them to breathe isn't completely developed yet. Some A's and B's are expected. 

The nurse said his caffeine dose was changed from twice a day to once a day. The caffeine helps remind them to breathe. It sounds like they'll probably go back to twice a day.

More evidence that something is going on is his HeRO score. The HeRO score is constantly calculated by his monitor and is an early indication of infection. It's based on his vital signs and goes up to 7. The lower the number, the better. Cameron has been floating around at a 3, but as of late is a 7. 

The other problem is he started to get bruising around his nose where his mask sits, a sign that his skin isn't taking the pressure of the mask. They switched him back to the prongs which scares the crap out of me because that's what damaged his nose in the first place. They positioned them carefully and the plan is to rotate him between the mask and prongs if his A's and B's settle down. If not, he may get intubated. The number of A's and B's he's been having concerns them because he's having too many. 

They took a chest x-ray and his lung expansion wasn't the greatest which is something else that may push them towards intubating him. And as a reminder, being on the ventilator damages their fragile lungs. It's always weighing the cost/benefit of each procedure or medication. There's always a downside. 

Wyatt is having a good night though. His PICC line went in nicely. He's tolerating his food. He's been stable.

They seem to teeter-totter. When one is up, the other is down. Wyatt was the one who's been down and Cameron was up. Sounds like they've decided to switch. 

I hope they figure out what's wrong with Cameron quickly. Last night was his last dose of antibiotics for an infection he's been fighting.

You can see the sore starting on his nose from the mask despite all of the foam and protective barriers they've used. Poor guy. 

I want them to be better. Just fat, happy, healthy babies in their cribs with no IVs, no tubes, no tape.

Current news

Today the Tiny But Mighty would be 28 weeks gestation and are almost three weeks old. A lot has happened in those three weeks, many ups and downs, but they're fighting like warriors and Nick and I are so proud of them.

Wyatt is currently on a ventilator. Just a few days ago, he was taken off of a machine called The Jet. As best as I understand it, it oscillates puffs of air to keep his lungs open. He's been taken off of it before then needed it again, so when they took him off this time, I noticed The Jet was still on his rack of life support. Today when I came in, it had been removed which says something about their confidence in him.
He is fighting pneumonia however. He had just gotten over some pulmonary hypertension issues only to get pneumonia which brought back a little bit of his pulmonary hypertension. His oxygen needs are low. The nitric oxide they use to treat the pulmonary hypertension is low as well, so he's doing good all things considered. He's on a 10 day course of antibiotics, possibly 14 days. He's had two 7 day courses of antibiotics and always two days after, he tanks. So this has been a stubborn thing that they're hoping just needs a longer course of medication. The poor guy had all of his IVs removed and was taking all his medications by mouth (which actually means through his feeding tube), but for the antibiotics, he needs a PICC line. This will be his second and I hate that he has to get poked so much, but it's what he needs to get better. His electrolytes looked great as well as his blood gas so they were going to wean him off of oxygen a little bit.
We can determine how good he feels by how much he looks around. When he's feeling good, he's very responsive to my voice and tries to find me. It makes my heart go pitter-pat when he does that and today he was looking for me so I know he's feeling better.
A few days ago was a different story and it was breaking my heart. I'm so happy he's back to using his sweet little peepers again.

Cameron has been doing well. His tummy has been having a hard time waking up so they've had to give him my milk over the course of an hour for him to tolerate it. But tonight, they're going up on his feeds because he's doing so well with it. They're also fortifying it (2 additional calories!) to give him a boost as he's a little behind on his weight gain. Depending on procedures and how they're doing, sometimes both have had to have feeds withheld. Since Cameron was slow to come around with feedings, he's behind.
He's also been off the ventilator for a while and is on CPAP. But we've had a setback. For reasons not clear to us yet, the CPAP prongs rubbed his nose which created a wound which then turned black. Long story short, the piece of his nose that separates it into two nostrils died and his now gone. He looks like he has one large nostril.
We are devastated. Our handsome little boy. I came home and was just about inconsolable for about 24 hours. We had prepared ourselves for health problems, but not disfigurement.
Plastic surgery has been consulted on this. Though I haven't talked to them (they're supposed to call me soon), it sounds as though he still has two nostrils and some structure is still there. The wound is healing well and not progressing. The NICU changed his CPAP to the CPAP mask so his nose can heal.
The issue with the mask is that it has to put pressure on his face which can cause his fragile skin to break down. They've got some foam and so far his skin is handling it. If his skin starts to break down, they have to intubate him. The problem with this is that the ventilator damages their lungs, can give them chronic pulmonary disease and Wyatt already shows signs of that.
The nose thing is cosmetic and would be something to fix when he's older.

I think it can be fixed.
I hope it can be.
I have a lot of questions for plastic surgery, needless to say.

Healthwise however, he's doing really well. We get to hold him, though keeping his mask sealed while doing so is proving to be a challenge. But, he can get his skin-to-skin snuggles once a day most days.
We can't wait for Wyatt to improve to the point of us being able to hold him.

And that's the difference for these very early babies. People often think they're just like full term babies, only miniaturized. But they're not.
You can't lift their bum too high while changing diapers because they can't deal with the blood pressure change.
You can't touch and talk to them as much as you want as the stimulation is too much.
You can't stroke their face to console them. If you can do skin-to-skin holding, you can't rock them, you can't pat or stroke their back. It's too much.
You can occasionally talk quietly to them. You can occasionally place your hands over their legs or body, but stay real still to simulate the womb or you'll upset them. You can change their diaper and take their temperature at 8am, 2pm, 2am, or 8pm. But that's really all the interaction we can get with them.
I want to rock them, cuddle them, kiss their sweet face, and tell them over and over how much I love them. But right now, it's not good for them.

When we visit, we spend hours just sitting and staring at them in their isolettes. We watch them sleep, watch them twitch, trying to will their health to improve. We judge their coloring, the shape of their belly. Is it bad? Is it good?
Is he comfortable? Is he okay? Will he be okay? When will they be stable enough to move out of the most critical care room?
For hours we watch their heart rate and their oxygen saturation go up and go down. We spend hours listening to alarms go off because their saturation and/or heart rate dropped too low and we watch the nurses revive them. Those alarms make our own hearts stop. We hold our breath each time. But this is all normal premie stuff.
You're constantly attached to your phone. Every noise it makes, every hour of every day...is it the NICU with bad news?
The stress is an unrelenting pressure in our chests. It tests our stamina, our sanity. But we must stay strong for our boys.

They rarely have a good day at the same time. We're almost always worried to the point of nausea about one of them. But they're fighting and doing everything we ask of them. Such tiny but mighty little boys. We're so proud of them.

Wyatt

I got to hold Wyatt for a few moments as they changed out his isolette.


Cameron

The Support

Now that the labor and delivery story is up, this blog will be more about updates on how the Tiny But Mighty boys are doing.

But before that, I wanted to take a moment to thank everyone for the amount of support they've shown. 

To my friends and family,

Whether it's a kind word, cheers for my boys, asking how we're doing, advice from those who have been there, or donations to their medical funds. Thank you. 

To Nick's co-workers,

I know time he had to take off work put more on your shoulders. But you generously took that on, brought us food, brought them prayers, well wishes, and even a very special blessing. Thank you. 

To my off-road friends,

For such a tough group of people, you've made the soft spot you have for others, especially kids who are struggling no secret. From prayers, well wishes, the laughs, to donations to their medical fund, thank you. 

To my neighbors,

We moved here only a few months ago but y'all have been so generous with support. Since I've been home from the hospital, we haven't had to cook a single dinner. Y'all have provided us with nutritious, tasty meals and even some treats. That and your prayers are something we've really appreciated. Thank you.

To the NICU,
Thank you for saving my babies and for helping them fight. The care they're getting is second to none. 

We're extremely lucky to be surrounded by great people. 

Labor and Delivery, pt 3 - They arrive!

About 7pm, as if a switch was flipped, my entire stomach contracted.
We'd had a long day of testing and procedures. At 8am I was at the connected children's hospital for a fetal heart echo. They wanted a cardiologist to look at the boys' hearts because Twin to Twin Transfer Syndrome can cause heart failure, backwards blood flow, and other problems.
It was a two hour long ultrasound on a rather uncomfortable table. I was squirming by the end of it and all the pressing on my belly was causing cramps.
After that test, I went to see the Maternal Fetal Medicine (MFM) specialist. There, the boys got an anatomy scan and we weighed the pros and cons of an amnio reduction. Baby B, Cameron, had too much fluid and his heart had abnormalities which told them he was feeling the stress of dealing with all of the extra fluid. Since the laser surgery was off the table now, an amnio reduction was the only thing we could do for them.
The benefits I was most interested in was that some of the pressure would be relieved and blood flow in the placenta would be improved. Also, relieving some of the pressure might keep me from going into labor so easily.  As it were, I would have contractions just from brushing my teeth. This wasn't a fix, just a bandaid that would hopefully keep them in there longer.
The con, it could bring on labor. And the doctor explained that if they were born now, the odds weren't with them. Labor would be a 1-2% change.
Of course we could simply monitor them and if they stayed in, they could wait until they were so sick that they were better off out than in. That day, they were better off in.

Nick and I discussed things and chose to do the amnio reduction. We knew the risks of doing nothing and the babies did not fair well. We both were of the mind that if we lost them, we couldn't live with ourselves if we'd done nothing.
The doctor removed over a gallon of fluid from Cameron's sac and he still had plenty to spare. I had minimal cramping, less than what the ultrasounds caused. I felt better and the doctor sent me back to my room.

Then they called us back to do a biophysical profile of the boys. It was basically another ultrasound. By the time this was done, it was about 5pm. I had endured about 6 hours of ultrasounds that day, each of them causing me to cramp.

Just before 7pm, things changed. It felt as though a fist was squeezing my insides with purpose. It wasn't painful, but it wasn't like the cramps I'd been having. Three minutes later, I felt another.  Three minutes after that, another.

I called the nurse.

She gave me a sheet of paper and a pencil. I was to draw hash marks for every contraction I felt and they would determine how many per hour I was having. Thirty minutes later, I had drawn nine hash marks and the contractions were getting stronger. I had suddenly, without warning, without any slow gradual increase, leapt into having 15-20 contractions per hour.
The nurse put me on the monitor which meant she and one other nurse had to sit and hold the monitor over my babies.
Their pushing on my belly with the monitors only made the contractions worse which had now added cramping to my misery. They handed me a button to push with each contraction.
"This is worse than when I originally got here," I said to the nurse. They paged the doctor.

I kept pushing the button with each squeeze I felt. I couldn't see how I could be having these types of contractions and not be dilating.
Word came back that the doctors were in the OR or tending to other emergencies, but they'd be down as soon as they could. It wasn't the answer I wanted. Just hang the magnesium. Give me the pills that stopped this before. I couldn't have my babies now. It was too soon! Too soon!

I labored for two hours before a doctor was finally free. I had lost complete control of my body. I laid on the bed, shaking uncontrollably from pain and the anxiety of being in labor at only 25 weeks gestation. I had gone from 2.5cm to 5cm dilation. No, no, no! My nightmare was continuing. Labor was progressing. My little boys! I couldn't lose them. I'd lost two babies before these two boys. I couldn't go through this again. How would I find the strength?

The doctor decided to transfer me back to labor and delivery where I would be started on magnesium and other drugs to stop labor. But their rooms were full so I had to wait.
Meanwhile, my contractions kept getting stronger, more frequent, until they finally seemed to run together.
"This contraction won't stop," I complained, gripping the bed rails with white knuckles. They reassured that they were working on a room for me.
"I'm not going anywhere, I'm right here," my nurse said to me.
I was already experiencing pain I'd never felt before, then suddenly it ratcheted to an entirely new level. The pressure was intense. I hadn't taken any birthing classes yet. I had no idea how to deal with the pain and pressure, but I knew exactly what it meant. I clamped my knees together knowing what was coming.
"I feel like I need to push," I said through unshed tears.
"Like you need to have a bowel movement," the nurse asked.
"Yes!" I punched the plastic bed rails over and over to distract myself from the pain, from the overwhelming pressure. Please, stop. Not yet babies, it's too soon!
"Don't push," a chorus of nurses said to me.
"I know," I ground through my teeth.
The nurse caught the eye of another nurse. "Lets just take her over," she said in a decision that likely saved my babies.

The contractions were relentless. I held my knees together, fighting with every fiber to not push. I punched the bed rails, I cried out, anything to keep those babies in.  The pressure though. Oh God the pressure.

The doctor checked me again. Holding babies in while the doctor checked my cervix was a feat equal to lifting cars off of children. Everyone in the room quietly waited for the doctor's next orders. "Okay," she said to me. "You're going to have this baby vaginally."

I looked at Nick as I hugged the bed rail. A tear slipped out, "It's too soon." Too soon.

The doctor barked orders. "Call anesthesia! Get her to the OR!" It was a whirl wind of controlled chaos, but all I could focus on was not letting Wyatt come out yet. It could kill him.
With her hand still inside of me, pushing Wyatt back, she apologized for how crazy things seemed. With one hand she put on a mask. She straddled my legs as she rode on the bed with me to the OR.

Masks flying, equipment and carts wheeled about. NICU's readiness was confirmed. Somehow I managed to crawl onto the operating table without birthing Wyatt during the transfer. As I laid down on the table, I felt my water break.

Before I could contemplate that, an anesthesiologist was over me. I was breathing like I was sprinting towards a finish line. He clapped a mask over my face which seemed to pinch my nose closed, suffocating me. I wrenched it off immediately. "It's oxygen! It's good for the babies," he said and slapped it back on. For the babies, was all I needed to hear and I held it in place for him.

Lots of things happened in what seemed like an instant. And ultrasound, an IV placed, none of which I was aware of. I was simply straining to keep my body from pushing Wyatt out. I was losing the battle, but I'd fight to the bitter end. Not yet Wyatt. Not until they are ready to help you, sweet boy.

"She's obviously uncomfortable. I'm going to have her push," the doctor announced over a conversation about the IV.
A nurse appeared over me. "Push...like you're having a bowel movement. Curl your body around that baby and push."
That I did.
"Whoa! Not so fast!"
Two pushes and I hear, "We have a baby and he's trying to breathe. Lara, he's trying to cry!"
I couldn't hear his little voice, but that he was alive was enough to celebrate. He wasn't even far enough along that he should be trying to breathe. By some miracle though, he was.
I didn't even see Wyatt. NICU quickly whisked him away. Saving his life was more important than me taking a precious moment from him to see him. Besides, Cameron was next in line.

"Baby B is transverse. Prep for c-section!" Cameron was laying sideways across my cervix and couldn't come out that way.
"Take some deep breaths," the anesthesiologist said to me. At that point, I completely gave in. Things were out of my control. One baby was here, the other soon after. At that point, I really wanted to just run away from everything, something the anesthesia would give me.

It seemed to take forever for the gas to work. And it would be gas, not an epidural. They didn't have time for anything else.
He showed an assistant or nurse, maybe a resident or student, I'm not sure which, where to press on my throat to prevent me from aspirating when they put me under. I slapped his hand away and rather than argue with me, he waited until the gas did its job.

Ten minutes after Wyatt was born, Cameron came into the world. At 9:17 pm, Wyatt was born. By 9:27pm, they had me knocked out, cut open and delivered Cameron.

While I was in a tornado of activity, Nick had been dressed in scrubs and put in the recovery room. Initially, they were going to have him there. But things were moving too fast and too much was going on. It was okay because saving the babies lives was the most important. We can look at them later, if they survive.
A nurse would come in to update him and even took pictures of the boys. But during all of this, Nick mostly stared at a wall. All he could do was hope, pray, everyone would be okay.

Slowly the anesthesia haze lifted and I came to. Unfortunately, the anesthesia wears off faster than the pain meds kick in and I found myself in as much pain as when I was in labor.
Nick says I was nice about it though. I would wave my hand over my stomach as if I were casting a magic spell and give a pitiful sounding, "Hurts." I would learn later that having a c-section after a vaginal delivery is about as painful as it gets.

They connected the dilaudid pump plus a few other pain meds. I struggled to keep my eyes forward as we got updates from the NICU, from doctors, from social workers. The boys were still hanging in there.

My night was not done though. As soon as I was concious, they began "uterine massage". Every hour, someone would come in to press on my stomach to help get the uterus to shrink back down and clamp off any bleeding. Ugh!

After I had recovered, they wheeled me back towards the OB floor. But we made one important stop at the NICU and I met my two precious boys.

Labor and Delivery, pt 2

Either by design or by mistake, the large rectangular window near me on the helicopter was just out of my view. All I could use was the lower corner closest to me but my view was mostly of the night sky. The sun had long gone leaving no color to the sky. Pitch black cloaked the mountains and I could see a few twinkling city lights if the helicopter tipped enough. I stared at what were light grey walls in the dark, watching medical equipment swing with the movement of the helicopter and feeling a constant vibration I assume comes with every helicopter. It's not a floaty feeling like an airplane. It's kind of a grit your teeth and hope the thing holds together feeling. Someone had a flashlight they'd turn on I assume to look at me, IV medications, or other necessary things. Occasionally, objects swirled together as tears filled my eyes. I managed to blink them back, but the weight of the situation still pressed on my chest, on my heart. My babies.  Please protect my babies.

The pilot expertly navigated the brick-turned-bird to the hospital and we swooped down, circled, and then landed with a gentle thud. Except for the flight nurse asking if I was okay, everyone was quiet while the helicopter powered down. 

Cool air skipped across my face as the door opened. As gently as they could, they unloaded me and wheeled me into Labor and Delivery. I was helped into a hospital bed in my own room with a closed window to my left that I'd learn later was not to the outside, but was to the NICU. My room became busy with activity similar to the last hospital. They confirmed information from me, they got my side of the story. They took vitals, checked medications, asked how I was feeling. 

"I'm okay," I said to them. Things had calmed down at least. I wasn't in any pain, just somewhat scared.

The doctor soon came in, introducing himself as a resident and telling me who his attending physician was. He asked my side of the story, checked if I had dilated anymore, which I hadn't. Then the nurses came at me with that blasted monitor.

We hadn't given the babies names yet and so they were referred to as "Baby A" and "Baby B". Baby A earned his letter by being the one closest to my cervix. He was also what is called the "donor" with their Twin to Twin Transfer Syndrome. His fluid levels were much lower than Baby B who essentially had an Olympic sized swimming pool to float around in. This would cause me and the nurses much grief.

The nurse applied gel to my stomach and, with a disc attached to a cord, slid it around my stomach, hunting for Baby B. With each press of the disc, I could feel the cramping start. I knew they needed to check a heart beat on them, but I was slowly trying to scoot out from under them with my behind. 

As soon as they'd get a heart beat on Baby B, he'd swim away to another part of my abdomen. And while he darted every direction, poor Baby A was pinned to the wall of my uterus by Baby B's insane amount of fluid. They could usually find Baby A fairly easily. And if they got two heartbeats, there was always a discussion of whether or not they have two babies on the monitor or if they were capturing the same baby.

After an hour of torture and cramping due to my belly being pushed on, they called in the doctor who did an ultrasound to find Baby B. And even with the ultrasound, they couldn't catch him. The doctor could see him, the nurse would put the disc on my stomach, and then Baby B would swish away, applying a well aimed kick to the disc to confirm just who was in charge.

I was trying to find a happy place as I had about had enough when the doctor said, "Well, we have them on sono and they're happy with a good heart beat. So lets just monitor them by ultrasound."

And so was the routine for the next several days. I'd take medication, they'd check on the babies, I was ordered to stay in bed and to let them know if I needed to go to the bathroom. Once they were certain that I wasn't about to deliver at any moment, they sent me to the regular OB floor. This is where I would stay until a fetal heart echo could be done on the babies and a Maternal Fetal Medicine (MFM) specialist could see me.

And so I relaxed, took medicine, ate, and tried to get some rest. They even talked about sending me home. It was a good few days until 7pm on a Tuesday night after a long day of tests. 

I worked in an Emergency Department and often rolled my eyes at the drama television injected into their medical shows. I had never seen anything unfold the way it did that night, the night my boys were born, except on TV.

Labor and Delivery, pt 1

Though my mind was spinning with possibilities and I was pretty uncomfortable, I feel like I did a good job walking into the Labor and Delivery department looking calm and under control. 

Once all of the paperwork was filled out, I was taken back alone to be weighed. I had gained another three pounds in the span of just a few days, all fluid from the Twin to Twin Transfer Syndrome (TTTS) affecting my babies. Ugh, it was progressing, the surgery is supposed to fix it, but now we had a complication on our hands with the spotting. 

I mentally collected myself. Lots of women have spotting and it turns out to be nothing. I had read. Right?  

They whisked me away to a room. Nick followed closely. Nurses, patient care techs, they all came in strapping things on me, taking measurements, asking questions, getting me into a gown. A flurry of activity that stole my thoughts. I wasn't thinking at that point, just giving myself over to the medical professionals and simply being. 

The doctor came in and introduced himself. He was one of the doctors in my doctor's group. I had never met him, he'd never met me. But he would later work some miracles which I feel is a big part of why my two boys have a chance.

After introducing himself, he tells me he has to look and to assume the position. All of the cramping intensified during his exam, as the nurse had promised. But his findings drove fear into my heart. "You're dilated 2-1/2 centimeters and 80 percent effaced."

What?

He looked concerned.

I got really concerned.

"The baby's head is right there," he murmured to the nurse who had been running a monitor over my belly, pushing way too hard, trying to get my babies' heart beats. I would learn to hate the monitor.

He ordered a lot of medications, some of which he promised will make me feel horrible, "but it would help to stop labor."

Labor? Excuse me? I was only 24 weeks! How could I be in labor!! I was walking around just an hour ago! No, no! I was supposed to have surgery and give birth ten or twelve weeks later to two healthy baby boys. This wasn't happening! This couldn't be happening! Why was this happening?

They started an IV and bag after bag was hung and connected to my arm. I swallowed four giant pills of the same medication, some sort of super Ibuprofen. It and magnesium would try and stop labor. 

About 30 minutes later, the general discomfort began to ease. I wasn't cramping as much but I did feel the hot flash brought on by the magnesium. Things started to settle, or so I had convinced myself.

The doctor returned, asked how I was feeling. 

"Better," I said and he gave a passive nod.

"We need to transfer you because if these kids come, they'll need a NICU with higher level care. I need to make some calls. Let me check you again."

Luckily, labor hadn't progressed and the doctor left to make his phone calls.

The doctor returned again. "I can't get you transferred to the hospital I wanted because their NICU is full. But we have a second option. I'll work on that." I still couldn't process what was happening. Were the babies going to come tonight? And at a hospital that wasn't the first choice? Why was everything suddenly going so wrong?

I can't remember why, but Nick had to run home and the nurse confirmed that he had time. A few minutes after Nick left, the doctor returned. 

"I got you in to the first hospital. The helicopter will be here in about thirty to forty five minutes."

"Helicopter," I asked. My eyes about fell out of my head. I had figured I'd go by ambulance.

"Yes. The hospital is a forty five minute drive from here and if those babies come in the ambulance, they won't survive. So you're going by air," he said. 

I text Nick:



"What about Seattle," I asked.

"You're not going to Seattle," the doctor said.

I let my head fall back against the pillow. Did I say a prayer? I don't know. I was too stunned to even cry. 

The flight crew arrived to the room just before Nick did. They asked questions, took information from the hospital staff. I was instructed to lay on my side. They wrapped a sheet around me to protect my dignity and strapped me down onto their gurney. Buckles and straps went all over me, clinking and clacking together, buckling with a snick. The crew was extremely polite and kept conversation light.

The hospital doors slid open and the cool air hit me. Lights slid across the shiny paint of the red and white helicopter as they pushed me towards it. As an EMT, I had sent a patient by helicopter, totally unaware of the impact it would have had on my patient. 

I was the patient now and as they slid me into the back, it finally began to dawn on me just how serious this was. My babies' lives were in jeopardy. I wanted Nick there with me.

As the helicopter whirred to life, my eyes filled with tears and my chest heaved. Please, baby boys. Stay put. 

But I would quickly learn that I had absolutely no control over the situation.

Wyatt and Cameron knock, knock, knocking on cervix' door

I've been told that I'm one tough cookie. As much as I'd like to believe that I'm in possession of an extreme amount of fortitude, it's more likely that I'm simply one dense cookie. Dense cookie like the first ones you ever made for a boyfriend or girlfriend. Dangerous, inedible, weapons of drywall destruction should you fling one at a wall. No bounce at all, just a heavy thud if you drop one on the floor. I wouldn't use the 5 second rule in this case. Just consider it a loss and keep the dog from eating it to avoid the 3am diarrhea they're sure to get from said dense cookie.

For a week, I'd been uncomfortable. I'd toss and turn in bed, unable to find a good way to sleep. My stretched belly felt like it should split right down the middle if I so much as twisted or bent wrong. It was like a balloon inside of me kept expanding. My ribs constantly ached and riding in a car made it seem as though my rib cage was about to pry open. My right side ribs were the greater offender and I'd press on them for a little bit of relief. I squirmed around constantly. I was 24 weeks and looked full term. But twin pregnancies are known to be uncomfortable. So I put up with it not knowing it was actually prelabor. These are the things dense cookies do. They ignore signs.

I was 24 weeks and 4 days when I saw my maternal fetal medicine (MFM) specialist. He measured my cervix. It was 4.5cm or there about. Fluid levels on Cameron were above normal. Wyatt had low levels, but still normal. It was Cameron's heart that caused my MFM concern. His heart showed signs of stress in trying to deal with Twin to Twin Transfer Syndrome (TTTS). There was a little bit of thickening on one side of his heart and so my doctor diagnosed them with stage III TTTS and recommended Fetoscopic Laser Photocoagulation. The procedure would split the placenta in two and stop the TTTS. If everything went as planned, I'd carry to 36-37 weeks. The procedure comes with risks, including a 40% chance of one of them dying. However, if I did nothing, there was an 80-100% chance of both of them dying.

I would have to fly to Seattle to have the procedure done. My appointment was set up for that Monday at 8:45am. I was instructed to fast just in case they take me into surgery right away, since TTTS can worsen rapidly. If I didn't have the procedure Monday, they'd wait until Tuesday.

Things were happening so fast. I was scared to death that I could lose one. I was also a bit relieved. There was a procedure that could help. We also had a diagnosis and a plan. Even before TTTS showed up, I was worried about it to the point of researching it nearly every hour I was awake. I'd learned that increased protein could help prevent TTTS or at least help it from progressing. And so I managed to ingest 200 grams of protein daily. I felt like I had a brick in my stomach 24/7.  There are many cases where TTTS remains at stage I and all they do is closely monitor. I was not one of those cases. Left alone, mine would progress with dire consequences.

At 24 weeks, 5 days, we had our hotel and flight arrangements made to the tune of $1800. Everything was listed as medical. The airline gave us a $200 discount due to it being an emergency surgery. The surgery center we'd go to had a deal with some hotels near the hospital. We found a place to board the dogs that I was happy with. "Cage free boarding" the place was so they wouldn't be locked in a kennel for the next 5 days. Everything had worked out so smoothly.

After dropping off the dogs, we stopped by my husband, Nick's, office because I had to use the restroom for the twentieth time that day. That's when I noticed the spotting and my heart screeched to a stop.

I called my doctor who recommended I go to labor and delivery. I told Nick we had a change of plans. The amount of worry consuming me for the 45 minute drive from our location to the hospital was but a ripple in the ocean compared to what we were about to face.