A little bit of normal, a little bit of NICU

The Tiny Mighties are doing really well. We were talking to the nurse just yesterday about how amazing it was that they were able to be on the regular nasal cannula considering they were born at only 25 weeks gestation. Somewhat of a miracle actually. Currently they're a few ounces short of 4 lbs.

While we're going about some more "normal" things that you do with babies, a little bit of NICU life still intrudes.
Cameron is anemic which they've been watching closely. He's at the age where his bone marrow should be mature enough to start making red blood cells.
Several weeks back, Wyatt was anemic and he proved that his bone marrow hadn't been ready. He got low enough that his gut slowed down and we had a NEC scare. They had to go through a "rule out" where they go through labs, withhold feedings, and a bunch of other stuff to determine if he has whatever bug they're concerned about. Wyatt had 48 hours of no feedings, which made him very angry and then slowly they had to introduce his feedings back, gradually increasing until he's back up to full feeds.
When I heard Cameron was anemic, panic hit and my mind has been running nonstop about how to prevent Cameron from going through a NEC rule out like Wyatt had.

There's a catch-22 with anemia and their age. They have to become anemic in order for their body to signal their bone marrow to make red blood cells. But with anemia comes more desat episodes. They sleep a lot which with Cameron, is interfering with his learning to nurse and of course, if the anemia is severe enough, it can cause what Wyatt had to go through.
If they give them blood, then their body thinks they made red blood cells and their bone marrow doesn't kick in. You wait to see if he gets better or worse knowing they can't check labs every day because that'll make them even more anemic. You just watch for signs in him to see if he's getting worse.

The plan has been to give Cameron iron and wait. It drives me crazy but I understand the process. Lots of hand wringing and fretting as of late, but we got good news. Cameron has enough iron and his labs show that he's working hard at making some red blood cells. Way to go Cameron!!

So lets concentrate on a little bit of normal.
They're getting better at controlling their body temperature so it was time for their first real bath! Here's Cameron in his bucket.

They were both a little confused at first but then seemed to enjoy spa time. We wrap them in a blanket during their bath to help keep them warm and pull out one limb at a time to wash.

Both boys love their binkies but Wyatt has really taken off with nursing. I think Cameron is close behind and once his blood counts are back up, he'll be off and running as well. Cameron will latch a time or two but is then tired. Wyatt can nurse for a few minutes and then wears out. With them being only 34 weeks gestational age, they wear out quickly.

A sweet little moment when Wyatt seemed to notice me.

One of the problems with being a preemie and nursing is that my supply is that of 8 week old twins. But the boys are just starting. Usually the mother's supply starts out with maybe a teaspoon and gradually increases along with the baby's ability. Complications arise when you have a preemie too young to nurse but have to pump to keep a supply.
If I just put them to breast, it'd be like them trying to drink from a firehose and could actually put them off of nursing. To get around this, I have to pump first so they can play around and only get a small amount of milk if they nurse. Gradually, I'll shorten the amount of time I pump so they're not flooded with milk but can feel like their nursing is getting them rewards. Eventually they'll get strong enough and smart enough to figure out how to control the flow. Then I'll have babies who can do what normally comes naturally for a full term baby.

At some point, I'll have to spend 5 days at the NICU to establish nursing before they introduce bottles. Even when they go home, they'll have to have some fortified feedings, which would be by bottle, to get them caught up on their growth. It'll depend on them and the pediatrician as to how long they're taking fortified milk. I might nurse them every other feeding and my husband can give them their fortified milk from a bottle.

The Tiny Mighties have a lot to learn still, but at least their bodies are healthy and strong enough to start!

Merry Christmas

Many people have supported our Tiny Mighty boys who have shown us miracles still happen.
Thank you.

We wish you a Merry Christmas!

First outfits and...?

The Tiny Mighties are preparing to bust out of their isolettes. They've been slowly weaning off the warmers and are now on "air control". The isolettes no longer warm and cool depending on their body temperature. It's close to room temperature air that they're living in and have graduated to outfits.

Cameron got a puppy dog on his butt. They're also on his feet.

Wyatt got little boy blue jammies with mittens since he keeps trying to pull off his oxygen.

First outfits are a big deal in the NICU. They're not as dependent on a perfect environment which means they're getting stronger. Soon it could be bath time!
With this development, we now have choices. We can hold them "skin to skin" or we can hold them swaddled. One of the benefits of holding them swaddled is that we can actually see their cute faces while holding them.

They're also getting really good with their pacifiers. Preemies aren't born ready to nurse. They have to learn to coordinate breathing, sucking and swallowing. They also have to build up their stamina.

Wyatt has really taken off with his binkie. He holds it himself even.

At first, I thought it was coincidence that his hand was holding the binkie, but he's done it enough that we think he's actually, knowingly, holding it himself. Smart boy!
He's also waking about 30 minutes before it's time to eat. He roots around, sticks his hands in his mouth, sucks on his binkie for over a minute and has given the nurses enough cues to tell them he's ready.

Ready for what, you ask?

Ready for non-nutritive nursing.
Sounds like great fun!

It's part of teaching them to nurse and Wyatt is ready to learn. Today was his first day "on the boob". I was instructed to go pump so as to not drown the poor boy with milk on his first go. We timed this for when he was hungry to increase the rate of success. The point of the exercise isn't for him to eat but to just let him play around and get used to a real live binkie.
With all of the tubes and things preemies may get in their mouth, sometimes they have oral aversions and don't want anything in their mouths.
Wyatt suffers no such thing. He was eager to learn about breastfeeding and did really well. After about twenty minutes, he was tired and giving cues that he was done. So I held him to my chest and let him sleep and it was the first time he really felt like he was mine.
As a NICU parent to a micropreemie, you have to ask permission to do anything. You ask if it's okay to touch them, ask when to change their diaper. The nurse feeds them, the doctors make decisions about their care. You stand by, feel useless and very unlike a parent.
For me, as a new mom, this was a great day.


Cameron loves his binkie, but he's still trying to remember to breathe.

He also tires out pretty quickly sucking on his binkie. But he does root around some and occasionally he wakes up a little before it's time to eat. He's not far behind Wyatt and soon he'll be ready. The nurse said if he's wide awake around his feeding time to go ahead and try with him. We'll see how it goes. Today he cuddled with Daddy.

In the picture above, his eyelids are a little swollen from his eye exam. Another problem with being a preemie is ROP which can cause blindness.
Vessels in their eyes can over grow if they're oxygenated too much. The vessels pull on the retina and can cause the retina to detach. So once a week, they get an eye exam to watch the vessels closely. They can do laser surgery to zap a stray vessel if they need to. So far, their eyes look good.. Even when they go home, they may continue the eye exams.
The exam is no fun. I haven't watched it. The nurses said it isn't something I'd want to see. They numb their eyes so it's not painful to them, but the tools they use to hold their eyes open are cringe worthy. So I take the advice and try not to be there during them.

So that's the latest on the Tiny Mighties. They're still showing us that superheros can come in little packages.

Wyatt's update

I wasn't sure what to expect as I walked into the boys' room. I'd been busy with appointments today and hadn't checked to see how Wyatt was doing. Honestly I was a little afraid to call.
The nurse practitioner and I made eye contact as I walked through the big double doors that required special privileges to open. She nodded at me, a silent message meaning she'd meet me in the boys' room.
When I walked into their room, I saw two babies and the nurse was working on an art project (a good sign). Immediately I went to Wyatt and asked him how he was feeling, as if he'd respond to me. He was fussing at the high flow nasal cannula. Then was fussing about how his head was positioned. Then there was something else he was fussing about. I hadn't figured it out by the time the nurse practitioner came in.

Wyatt's latest x-ray looked good enough that they stopped suctioning out his stomach. They were trying to get some of the air out of his intestines and Wyatt hated that tube. So that tube was gone. His feeding tube was gone because they're still withholding his feedings. They want one more x-ray to look good which they'll do in the morning. She expects he'll be back on feedings in the morning because he was acting like a healthy, albeit hungry baby. He was pretty angry about everything, I was noticing, while I offered him a gloved finger to hold on to.

They had checked a BNP level on him to see how his heart was coping with his PDA. Great news is he's coping well. So they're going to restrict fluids and watch it. With his blood counts back to a normal level, he isn't showing any signs of the PDA affecting him. As he gets bigger and his lungs continue growing and getting better vasculature, the pressure will improve and it may close on its own. If not, then they can surgically close it which would be easier and much better tolerated by him if he was a toddler at the time.

So we'll wait and see how he does. First get his tummy back in order, which it looks like it is and we'll deal with the PDA if we need to.

With being so worried about him, I had to snuggle him a little while. He was angry at the world since his food had been taken away. But several hours worth of snuggling and holding his pacifier for him to suck on the entire duration seemed to calm him down. By the time I returned him to his isolette, he seemed like a happy little boy. I wish I could have held him longer.

Cameron is doing well. He continues to try and remove his nasal cannula. He's such a feisty little guy. They both are. They're going to be so much fun.

PDA strikes again-Wyatt needs your prayers

Cameron is doing well. This post is mostly about Wyatt.

For the past few days, I'd been pushing the staff about how Wyatt seemed to be a little pale to me. He was slightly anemic but not dangerously low. They've been waiting for his bone marrow to kick in to make blood cells. If they give him a transfusion, then his body realizes he has plenty of blood and doesn't make his own blood cells.

That was a perfectly good explanation to me, for a few days. Then I noticed his belly was a little bigger. Then I noticed his vital signs were a little more up and down than his normal. 

I pushed again about it and again they wanted his body to make red blood cells.

And then he had a lot of left over food in his belly. That wasn't normal Wyatt. He's always been great about digesting his food. He loves his food. I drew a line.

One of the great things about this NICU is they do pay attention to parents' intuition. I was up at an obscene hour last night to pump and called to check on Wyatt. The nurse and I talked and I mentioned that perhaps his GI tract had slowed down because he was anemic. 

The next morning, I got a call from the nurse practitioner. 

They got an x-ray of his belly. There's a nonspecific bowel gas pattern but there was an area of concern. One of the big concerns with preemies is Necrotizing Enterocolitis, aka "NEC". On an x-ray, they'll see air within the walls of the bowels. But the radiologists only called it "suspicious". His blood counts came back low. So they stopped Wyatt's feeds, started him on antibiotics just in case and, since they were holding his feeds, they went ahead and gave him some blood.

He looks much better. He's a nice pink baby again. And he doesn't act sick which makes them think what is on his x-ray is air around some stool he needs to pass. And she agreed with me that his anemia may have caused poor perfusion to his GI tract, slowing it down.

We talked a bit about it and I hammered her with questions. But it did get her wheels turning some more and they're going to take a stool sample that can check for inflammation in his bowels.

Honestly, I think he's okay and the blood transfusion will fix it. His repeat x-ray showed that the suspicious area had moved so it sounds like that's just stool. Still, they're doing what they call a "48-hour rule-out". They start him on antibiotics as though he has it and wait for labs to prove he does or doesn't. If his labs are negative, then they'll stop the antibiotics. If they're positive, they'll continue the antibiotics.

Now onto his other issue, his PDA. 

His PDA may be the source of all his problems so they would call it a "symptomatic PDA". There are people walking around with a PDA, don't know about it, and are just fine. Sometimes they cause problems and it's looking like it is. It could be why his tummy is being so sensitive. It can also be why we're having trouble weaning him off of the high flow oxygen.

Among his many tests today, he had another heart echo. His pulmonary hypertension is still gone, but his heart is showing some changes consistent with being a little strained. It's mild and reversible, but it's pointing towards his "moderate to large" PDA causing problems for him. 

He's having a BNP drawn in the morning which will give them an answer. If elevated, they'll consider a few treatment options. One is to restrict fluids and possibly give him a diuretic and hope that closes the PDA. Another is to give him medication similar to Ibuprofen and Tylenol. The medication works better when they're smaller, but because he had pulmonary hypertension, he couldn't have his PDA treated. The third option is to surgically close it.

All treatment options carry risks, but for the surgery, since they work so very close to a nerve for the vocal cords, they can injure that nerve. This could ruin his voice, but more importantly, make it difficult for him to protect his own airway when he eats or swallows. 

So Wyatt could use some prayers--that his tummy is okay and that his PDA can close with fluid restriction and/or medication.

He had a rough day today with all the tests and not being able to eat. All I could do was hold his hand and talk to him. He seemed to enjoy that and eventually drifted off to sleep. I wish I could do more for him, my sweet boy.

The Kilo Club

Cameron has a shiny new membership card to a very important club that only very small premies are allowed to join. Wyatt has a similar membership card and neither of them will let me see it. You can't even google it. It's a super secret and well protected club.

The Kilo Club.

I'm not sure what they do in that club. Maybe it's like a math club. Someone puts up an equation and all members work the problem, smoke flying off the lead of their pencils, brows drawn down in fierce concentration. The first one with the correct answer wins that cool new highly coveted Star Wars toy all the kids want for Christmas.

Actually it means Cameron weighs over 1,000 grams. 1,000 grams is 1 kilogram. 

We give them three days to meet a new milestone weight. 

Say they reach 1,009 grams. Don't celebrate yet because their next poop could be 15 grams! Usually after three days, if they're over their milestone then it's safe to celebrate.

Cameron is 2 lbs 4 oz. Wyatt is 2 lbs 7 oz. 

Cameron is on regular nasal cannula. This is the flavor oxygen that he may end up going home on due to our altitude. He's only getting half a liter of oxygen. His favorite thing to do is to reach up, grab it and pull the prongs out of his nose. His oxygen saturation goes down and the nurse has to get up and reposition the prongs. Cameron fusses at the nurse while his prongs are replaced, his oxygen saturation goes back up, he settles in after getting reswaddled and all is well again...until he reaches for his prongs again.

His feeding tube was moved from his mouth to his nose in preparation for teaching him how to eat orally. Around 34 weeks of gestation is when they're usually ready to attempt feeding by bottle or breast. They show signs of being ready like putting their hands to their mouths, rooting around and waking up about feeding time. Cameron already has been rooting around and will shove his hands in his mouth. He's master of his binkie as well and he's only 30 weeks gestation. 

Wyatt is on high flow oxygen now so he is in charge of breathing. The machine doesn't breathe for him, just gives him extra oxygen. He's weaned down on his flow quite a bit and I expect within the next few days, he'll be on regular nasal cannula. Wyatt has been sticking his hands in his mouth and is learning his binkie. He'll gum it for a while then switches to sucking on it as if he just remembered what he's supposed to do. Maybe he's a little confused because of his feeding tube in his mouth. Hopefully he stops gumming it since I plan to nurse them. 

We're learning that he's a very sensitive guy. He's very aware of what's going on around him and when someone is around. He's responsive to my voice and loves story time. When he gets upset, he's easily consoled with a hand over his legs or his arms. And when I hold him, he stays calm and relaxed. Sometimes he goes to sleep, sometimes he just hangs out and looks around. He usually reaches an arm out as if he's trying to hug me back. He's a snuggler for sure and just a sweet, sweet boy.*

It's time for some pictures!

Wyatt:

He loves sticking his legs out

First time Daddy got to hold

They were changing his feeding tube so we took advantage and got a picture of him without anything in his mouth.

And, tiny hiccups!

Cameron:

He discovered the baseballs on the blanket that covers his isolette and was enamored. He spent a good 20 minutes looking all around at them.

Sucking on his binkie without anyone's help

Again with the baseballs lol!

*And we love holding you too, Cameron! (in case they read this blog in the future lol)