A Tale of His Feedings...and other assorted updates

The last time I posted, Sam was fighting an infection of some sort and back on IV fluids. Here are some updates:

BREATHING:

Now, he is on a regular cannula (the last cannula on his oxygen journey), 1 liter of oxygen (a very low pressure) and 21% oxygen (room air). Hopefully they'll start weaning him down on the liters of oxygen over the next week or so and he'll be able to come off oxygen completely!

After he came off the IVs he was swaddled and weaned out of his isolette into an open crib. He's been doing a fantastic job regulating his own temperature while swaddled!

WEIGHT:

He weighs about 2130 grams, or 4 lbs 11 oz. We're SO CLOSE to the 5 lb mark, which is one of the requirements for him to come home!

EATING:

We are currently working on getting him eating by mouth. I made the mistake of thinking "oh, he JUST needs to eat!"....this has been the longest, most tiring hurdle yet. We have to practice a LOT. I've been putting him to breast once a day for weeks, and a few days ago he finally started getting the hang of things. The speech therapist is helping him learn how to bottle feed, which is a whole process on its own.

Sam now makes noises when he cries; he's steadily getting louder and louder. He cries when he's hungry, when his diaper is dirty, when he sneezes (yes, and it's adorable), and when he just wants to be rocked. He ALSO cries if I put him down too soon, and will reach his arms out and grab my sides.

Weeks ago I wanted to hold him while he ate so he would associate me with his milk. Now he only sees me as a warm cow. I'm not exactly sure how to feel about this!

He is 39 weeks and 5 days old today. Friday he will be 40 weeks. I can't believe we've been in here for so long - 4 months! Time has gone by much faster than I ever expected it would, but...

As Sam continues to fight, so shall I.

PHOTOS!

His first day in the crib. You can barely see him!

"Oh for chrissakes Ma I'm tired! Stop it with the pictures!"

"Just kidding I'm happy you're holding me"

"For real this time no pictures. And stop cooing over the pom on my hat!"

"What is that large item you're holding over me? Please don't drop it"

"Okay okay this time I'll smile for the camera phone"

"Boob pillows make the best pillows."

"No what are you doing" *RAAAAAAAGGGGEEEEE*

"HELP!! Help me please"

"Is she gone? Is the coast clear now?"

"I'm keeping my eyes open at all times. Gotta protect my neck"

All In A Month's Work

I wrote this a few days ago, and forgot to publish. Mommy brain is in full effect!

We have not disappeared off the face of the earth!

This last month has been a blur. It seems as the time nears that Sam reaches 40 weeks, the days get shorter and the laundry list of things to get done gets longer.

Some developments since the last post:

- Samuel is now 1728 grams, or roughly 3 lbs 12 oz. Once he shows he can tolerate being weaned off his high calorie breast milk based fortifier (called Prolacta) and continues to gain weight on a bovine based fortifier, he will be moved into an open, heated bed.
- He is negative for MRSA again, and off isolation.
- He started his 2 month immunizations last week. His first shot did not go well, but he tolerated the second shot well.
- His episodes of apnea, bradies, and desats (known as ABD) have substantially decreased.
- He roots and latches on to the breast! For now, he is just doing non-nutritive sucking, to learn how to breastfeed. It also gives me an opportunity to get used to holding him.
- He still has mild ROP, but the doctor only gives him an exam every two weeks. Therefore, it isn't that bad and I haven't been very worried about it.
- Sam has earned another reputation for himself for turning from side to side and scooting upward in his isolette. The nurses joke that he is trying to escape. I don't doubt them.

I took an infant CPR class the week before last. It was triggering and scary, but incredibly empowering. Having seen my son turn blue and stop breathing so many times, it was important to me that I be able to react quickly and efficiently once he comes home.

I mentioned earlier that Sam is starting to latch. We're so close to him breastfeeding. The problem is - my milk supply has dropped significantly. I used to pump 3 - 4 oz per session; now I'm struggling to get 1 oz.

I talked to a lactation consultant, who is going to look at my pump and wants me to spend more time pumping at the hospital. It follows the idea that being with Sam makes my body produce milk. I started a power pumping regimen once a day. One of my friends gave me a bottle of lactation pills, which I started taking two days ago. Another friend put me in touch with a group of local breastfeeding moms, a resource I will take advantage of soon.

Finally, after completely breaking down in front of one of the nurses (I pumped at the hospital and only made 1 oz), I prayed. I didn't pray for my milk to increase; rather, I prayed for the ability to always feed my son. And I allowed some of the stress and fear to melt away. Do I want to breastfeed? Of course! Am I going to continue trying to boost my supply? Yes to that too. But I'm not going to beat myself up if I simply can't do it anymore.

Here are some pictures:

IMPORTANT NOTE:

The next picture is quite sad, and was taken just last night. After I wrote the bulk of this post, Samuel took a turn for the worst during an attempt to put in a PICC line. He not only experienced a very deep brady and desat, but he also had two seizures. He was hooked up to an EKG machine and had two different IVs running. He got anti convulsion medication as well as a blood transfusion after this. 

I went to visit him early this morning, and discovered that both his right arm and right leg were swollen due to IV infiltrations. There was some hubbub because the nurses no longer had IV access (which is how he was getting fed and his medications). 

Thankfully, his nurse was able to get another IV in. The PICC line was unsuccessful, which also turned out to be a good thing - they resumed feeding him today. The quicker they get him back to full feeds, the less he'll need the IV. 

This all started a week or so ago because of a suspected infection and abnormal bowel patterns. The bowel patterns resolved, and he has responded well to antibiotics for the infection.

Events like this are why I wrote my post about dancing. This was by far the hardest setback for me to handle - I broke down crying at the bedside, in front of the doctor as I got news about the seizures, and couldn't even keep it together long enough to get out of the hospital and into my car. Part of me didn't want to share that last picture because it's painful to see (and it was painful to be there, watching him cry and not being able to hold him or help him). It's hard to write about this experience without having a more positive picture to follow up with - a way to say, "this happened but it'll be okay!"

But this is as much a part of the journey as the good times, and so it has to be documented. I've been humbled, and I know I won't take his forward progress for granted anymore. 

I hope to have better news and updates in the coming days, as we attempt to get our 24 weeker-turned-37 weeks back to his normal self and moving forward again. 

As Sam continues to fight, so shall I.

ROP, MRSA Strikes Back, and Weight Gain

There was a baby boy born prematurely in the 1950s. That baby developed retinopathy of prematurity (ROP) and subsequently went blind.

You've probably heard of this baby - he goes by the name Stevie Wonder.

Samuel's cardiologist told me this story some weeks ago, when we were still grappling with his PDA. It's fascinated me since, particularly understanding that we have the medical advances we have now because of babies like Stevie Wonder. For example, doctors learned that the high levels of oxygen had caused his ROP and blindness - so now, they closely monitor blood oxygen levels and try to keep Sam below a certain percentage.

I bring this up because on Sam's last eye exam, the doctor found some early signs of ROP. He explained that the blood vessels in the eyes normally branch out like a tree. In ROP, the vessels grow a bit scrambled, which is what is happening with Sam. The doctor said it was fairly mild at this point, and would not even discuss future treatment plans with me. He said at this point they'd just monitor it, that Sam could grow out of it.

Sam also has landed himself back in isolation after he tested positive for MRSA again. As mentioned before, it's a colonization not an infection, so it doesn't really hurt him. The isolation is to protect everyone else. He was given a round of antibiotics. The doctor has told me before that they aren't going to aggressively attack it, because it could do more harm than good (we don't want him to develop any further resistance).

On the upside...Sam now weighs 1,034 grams, which is about 2 lbs 4 oz!!! I hollered when the nurse told me that. I'm SO excited that he made it past 1,000 grams.

When he makes it to 1,600 grams, he will be big enough to come out of the isolette.

He's also 32 weeks and 3 days. At 34 weeks, they'll bring in a speech therapist to see if he can coordinate his breathing, sucking, and swallowing. When he can coordinate those motions, he'll be able to start feeding from a bottle (and I can attempt to breastfeed)!

We're in the last two months before his due date, and hopefully the time he comes home. Time has flown by faster than I expected!

As Sam continues to fight, so shall I.

"Why is someone always taking a picture of me? Knock it off already!"

"Please let them take these tubes out of me soon"

"I see you still taking pictures, y'all ain't slick"

"This is MY pacifier. There are a lot of pacifiers in the world, but this one is mine."

Don't Be Afraid to Dance

I'm not afraid to dance.

Because when the breathing tube fell out and Samuel ended up with a pneumothorax and a partially collapsed lung, I cried harder than I've ever cried in my entire life. I was hysterical after getting the call at 1:00 am from the doctor, and a follow up call at 4:00 am. They'd put a tube in his chest to drain the air from outside his lung and completely jacked up his ventilator settings. He was put on a sedative/pain killer to ease the discomfort and keep him from moving too much. His feedings were stopped and he was given IV fluids again. It was a huge step back.

I'm not afraid to dance.

Because when I saw my baby the next day, I was less afraid of the tubes and more amazed at how resolute he still looked. He was sedated, but still kicked the nurse when she tried to change his diaper. He didn't even look fazed by what he'd just been through, as though it was his plan all along.

I'm not afraid to dance.

Because as I fell apart, the people around me rallied to keep me together.

I'm not afraid to dance.

Because yesterday, a mere week after this all happened, Sam was extubated. On purpose.

And he is KILLING IT.

I'm not afraid to dance, because yesterday I saw my baby's full face for the first time. I could feel him breathing, hear the air coming in and out of his nose. I heard his little cry, more of a whimper, but a tiny sound nonetheless.

And then he smiled. A full, dimpled smile. It lasted for just a few seconds, but it was by far the best thing I've ever seen.

When we hit the low points I cry hard. That's why when we have triumphs I dance even harder.

As Sam continues to fight, so shall I.

"I said LESS tubes, not more! Don't touch me, this is not okay."

"Mmm, I'm getting fed again, and no more painkillers! Still recovering from that chest tube."

"This kangaroo wrap really elevated our skin to skin session. Thank you Ace's mom for donating it to us!"

"Don't let this episode distract you from the fact that I'm still planning to take over the world."

"Whoa, hey now!! This cannula is a lot more comfy than that blasted tube."

"Ahhhh, yes. Got my mom, got my pacifier, I can breathe...life is good."

MRSA Update, Steroids, and "Ma Nini" Visits

We got an update on Sam's second MRSA culture....NEGATIVE!!!!!!!!

But, we had a surprise last week. Though he tested negative for the preliminary MRSA test, a culture showed a positive result. Due to that one positive result, he is still on isolation. They will repeat the test tomorrow and if he is negative, they will take him off!

When we arrived at the hospital today, the nurse was adamant in bringing the doctor over immediately to talk to me about Sam getting a steroid. He is not showing any progress on the ventilator, and they want to wean him, so the doctor is administering a round of steroids (similar to the 23 week steroids given if you're at high risk for preterm delivery). The goal is to strengthen his lungs. 

The doctor had to talk to us because there is a risk of cognitive side effects due to the steroids. However, keeping Samuel on the ventilator for much longer ALSO has a series of ill effects. We decided to move forward with the steroids. The plan is to wean him off the ventilator while he receives the course of steroids. 

Samuel weighs 800 grams, which is about 1 lb 12 oz. He's so close to 2 lbs!!

He's doing very well tolerating his breast milk. They also give him a boost of calories with a supplement called Prolacta, a special extract exclusively from breast milk. He poops nicely, too - this is probably the only time I've ever heard a poop described as "beautiful"! 

My mom came to see him for the first time yesterday - and it was an amazing sight to see! She sweet talked him just like Bigmama did. He responded well to her voice, too. I would talk to her on speakerphone during my pregnancy, and I'm sure he recognized her. In keeping with my family's resistance to the word "grandma", she has decided to be called Ma Nini. It works for her!

Ma Nini brought a car full of goodies. A good family friend of ours donated a Chicco infant car seat and huge box of clothes (thank you!!). Ma Nini bought a 4-in-1 car seat, some booties, and an industrial box of wipes. Carrying the car seat to his pending nursery filled me with a surge of excitement. I often daydream of the day we get to bring him home in it. 

Of course, you gotta see some photos from the past week:

"I gotta work on my plan for world domination."

"First things first... food and poopies."

"I know my arm looks nice but could you PLEASE stop with the pictures?"

*dreaming of more ways to cause trouble*

"And one and two and...lift those legs higher!"

"Lift and twist. Work that core! Gotta get summer ready!"

*Ma Nini x Sam, 2017 First Visit Edition*

Lots of baby loot

As Sam continues to fight, so shall I.

1 Month Birthday, Scares, and Good News

I am one day late, but HAPPY ONE MONTH BIRTHDAY TO SAM!!!

I wanted to get cupcakes or something for the NICU, but forgot. So, we'll do a nice celebration for his 2nd month birthday instead.

Sam has had quite the roller coaster this past week. Saturday night he had back to back brady desats, which got really terrifying after the 2nd hour or so. He did recover fairly well later in the night.

He is up to 14 ml of breast milk, administered over the course of an hour, every 3 hours. They discontinued his lipids two days ago, and his IV fluids yesterday. Today, they removed his PICC line.

That means - outside of an IV they placed for a potential transfusion on Monday (which he has NOT yet received) - the only tubes in Samuel right now are the feeding and breathing tubes.

This. Is. HUGE.

If he continues tolerating his feeding as he is, we will be able to focus on weaning him off of the ventilator and gaining weight.

Speaking of, he is currently 730 grams, which is about 1 lb 10 oz. He was up to 755 yesterday but lost a little bit. The weight fluctuations are still to be expected.

Here is another photo dump:

"She raised the isolette top...I'm FREEEEE"

"Hey, wait a minute...oh brother, not this again...."

"DIAPER CHANGE?!?! BLASPHEMY! UNHAND ME WOMAN"

"Ahhh, so much room for activities!"

"Getting real sick of this diaper change nonsense"

"If I pull hard enough I can get this contraption out of my mouth"

One last thing....SAMUEL TESTED NEGATIVE FOR MRSA THIS WEEK!!!!!!!!!

One more negative test and he will come out of isolation. 

I'm so proud of his progress and looking forward to watching him continue to grow. 

As Sam continues to fight, so shall I.

PDA Update, Tiny Boxer, and Self-Soothing

Yesterday my nurse gave me GREAT NEWS:

SAM'S PDA HAS COMPLETELY CLOSED!!!

I could have done cartwheels through the NICU when I found out - though I'm told that sort of physical activity is frowned upon in such small quarters. I did manage to do a dance.

Hopefully his closed PDA will mean less desats, better feeding tolerance, and no need for further medical intervention (which would have possibly included surgery if the medication didn't work).

"Little Boo", as dubbed by one of the nurses (AKA The Head Troublemaker of the NICU), continues making a name for himself by fighting anyone that touches him wrong - or at all. He especially dislikes diaper changes and routine vitals checks.

I think he's having a conversation with himself about the unfairness of being bothered.

I assure you, no harm was done to Samuel in this photo. The nurse wanted to reaffix the holder to his breathing tube. He was not pleased.

I didn't stay long yesterday, but just before I left I got to see something awesome. Sam had a busy hour of dressing change, vitals, diaper change, and repositioning. Then I stuck my hands in the incubator to cradle his head and chest - he loved that, but didn't love it so much when I let go. He kicked and cried for a few minutes until he shoved half his hand into his mouth...and began sucking. 

That's right. Sam starting sucking his fingers last night. 

He's tuckered out from all those sweet karate moves.

It was amazing to see him calm down from self soothing. I can't believe such a tiny little guy can do so much. 

As Samuel continues to fight, so shall I.