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.

Take a Break, Mom.

Yesterday was the first day in over 3 weeks that I chose not to visit the hospital. I was inches from hitting the brick wall of pure exhaustion. Last week I wore my underwear backwards, which makes for a funny story, but is also frightening. Backwards underwear is an easy cognitive failure to fix. But such errors while driving, cooking, or cleaning could be more dangerous and even deadly. 

I also noted that when I slept I didn't rest, I had little to no appetite (a breast milk killer), and had trouble staying hydrated. 

Sam needs a functioning mommy to ask questions and sit by his side and hold him and speak to him and hum (not terrorizing my poor child with my singing voice) songs. He doesn't need a fatally exhausted mommy who can't see straight and risks getting sick. 

So, I stayed home. It was much easier in theory than in application.. 

My emotions swung wildly between relief and guilt. I sobbed for a good 20 minutes, because I wanted so badly to see him, I felt guilty for not going, but I also knew deep down that I needed rest. After getting some awesome advice from my aunt, and soothing words from my mom, I had dinner, called the hospital, and went to sleep. 

I GOT THE BEST SLEEP EVER. 

Honestly, it's been weeks since I slept like that. I believe I finally got that wonderful post-delivery sleep I always hear so much about. The only bad part was a nightmare in which Samuel went missing from the NICU and I had to find him, but even that was a good sign - it meant I was actually sleeping deeply enough to dream for once. 

Sam's nurse texted me a picture of him last night, not long before I went to sleep. He had a very good, stable day yesterday, and that has continued to this morning. He had another transfusion this morning, which I expected. He is also tolerating his feeding pretty well thus far! 

I am feeling so much better today - like a whole new person, almost. There's actually some gas in my tank and the world feels a little brighter than it was before. It feels so refreshing. 

And of course, with some more energy, I'm going back to the hospital today :) 

As Sam continues to fight, so shall I.

Bigmama Visits & Sam Spam

Happy 3 Week Birthday, Samuel!!

It was the perfect plan. My aunt was taking my grandmother, affectionately known as Bigmama, to a doctor's appointment downtown, and decided to surprise her with a trip to the hospital to see Samuel. We coordinated the time and kept it all a secret until they arrived at the hospital.

I've seen a lot of reactions to my son, but none compare to Bigmama's. She nearly ran to his bedside, and when she laid eyes on him - it was like magic happened. She hollered out and began to cry, her hand clasped tightly over her mouth in awe. I teared up too. I was looking at the first and fourth generation of my family, right there in the same room. She spoke to him the entire time she was there, in her soft Bigmama voice. I was SO happy she got to see her great-grandson, and I know she was happy too. When he comes home from the hospital, my first order of business will be to take him out to the south side to spend the day with her.

 Don't tell her I posted this, she'll kill me

Samuel is gaining weight. He is now at 690 grams, which is about 1 lb 8 oz. He's starting to look bigger and thicker now, too! 

Over the past few days since I've posted, Samuel has done fairly well,with only a few issues. He is having some desaturation problems. The PDA in his heart reopened, so he was given another course of indomethacin to hopefully close it back up. He also was given two different antibiotics, in case infection was causing the desat issues (blood tests came back negative, but the doctor wanted to get ahead of it just in case). Finally, he is receiving an antibiotic in his nose for the MRSA. That course will finish on Tuesday, and then he'll need to have three straight negative results to be taken off isolation. 

They have not resumed feeding yet. I am hopeful that when the rounds of medication are done, they will be able to start. I'm really glad he's still gaining weight despite not eating. 

We are still doing kangaroo care, and though there are good days and not so good days, it's really a wonderful experience for us both. He always looks so cute and comfortable on my chest, and yesterday as I was preparing to put him back in the incubator he stretched both his arms out across my chest and hugged me. 

I have started to speak in Spanish to him sometimes, as much as I can muster. I also hummed some beats from 20XX's recent release, Friday Night Lights, as I held him so he could feel the vibration in my chest. One day, I'll be able to tell Sam stories of hanging with those guys as they made music, watching them make masterpieces out of silence. Hopefully he'll get to spend plenty of time with them before that, learning the ropes of beat making and producing. He really enjoyed it when I hummed to him, so that will likely be a new tradition for us.

It's been a few days, so here is some Sam Spam:

He can be so dramatic sometimes

I like to think he was reaching out to me

Sam's favorite hand rest. Leave that tube alone!

Friendly reminders near his incubator, and the guardian angel Aunt Jami got him

Control hub for all his IVs. Looks like a spaceship command center

I think he was kicking around at this time

Again, with the dramatics

He LOVES laying on his tummy...so cute!

He's growing stronger, longer, and fiercer by the minute! I absolutely love watching him develop and grow, with his own special personality. 

As Sam continues to fight, so shall I.