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Today was another productive day. The audiologist came and Cooper had his newborn hearing screen, which he passed with flying colors. He also breastfed for 15 minutes! We practiced checking the placement of and flushing his feeding tube, as well as gavage (gravity) feeding.

We also noticed that his weight hasn't changed much in the past few days, but the team wants to give him a little more time to adjust to the new routine on the floor and his fortified feeds before changing anything. Our doctor also told us that something had come back on his newborn screen suggesting that he may have a problem with his thyroid. They ordered some further bloodwork to clarify whether he really does have an issue. Our nurse looked at some of the results and said the numbers she could see looked good to her, but we'll need to get the official word from the doctors tomorrow. Our poor little guy doesn't really need anything else stacked against him!

Otherwise, we just had a nice day chillin' with the Coopster - feeding him, participating in his care, and lots and lots of snuggling!

Nacho Day

It was wonderful to spend the day together as a little family yesterday! And also, most importantly, it was nacho bar day in the hospital cafeteria! 

We had a really productive day. We had important conversations with the new care team about a path toward discharge. They’ve started fortifying his bottle feeds and mixing a cocktail of my breast milk and a high calorie formula. I can try to breastfeed 1-2 times a day, and whatever he gets from that is just a bonus! They’ll be closely monitoring his weight to make sure we’re getting the balance right. They want him to be gaining about 20-30 grams (2/3 to 1 oz) a day! 

We had a heart to heart about the feeding tube. They are happy to keep him here until he is eating completely by mouth, but at the rate that’s going it may be a while before he gets to that point. The nurse was really encouraging and patient and started educating us about how the tube works. By the end of the day, she had both of us place and use the feeding tube while she watched. 

So at some point, hopefully in the next week or so, we will probably take our little Cooper home, with a feeding tube. It’s obviously not what we would have imagined, but it’s not the worst thing ever. He will hopefully only need it for a short while, and he will be followed closely by the outpatient feeding tube clinic at PCH. 

For now, the plan is to make sure he’s tolerating his full feeds and gaining weight appropriately. And when they feel like he’s demonstrating that he’s on the right track and we’re equipped to fully care for him at home, they’ll release him into the wild! 

New digs!

Yesterday we were shocked to find out that they were moving Cooper to the infant floor. He is still in the hospital but not in the ICU anymore. We’ll take it!!! It’s a huge step in the right direction and also has its logistical advantages as well. He has his own private room now, and Mat and I can be there at the same time!  We can even take our masks off when we’re in the room alone, which led to our first mask-less family selfie! 

Cooper is getting to see our faces for the first time! 

He had a great day yesterday and handled the move like a champ! He’s been off oxygen support for over 48 hours now, and he has his dips but manages to resolve it on his own. He’s nearly at his goal feeding rate, although he’s still taking a fair amount of it through his feeding tube. He did successfully breastfeed for 5 minutes yesterday, though! And he is beginning to cry and show other hunger cues when his feeding times are approaching, which is great!

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He had another ultrasound of his brain before being transferred to confirm that he no longer had those pockets of infection, and everything looked great. The doctors are really encouraged by his progress and now we really just need to work on increasing his oral intake and packing on some chonk. They’re now fortifying my breast milk with some extra calories to speed up the process, but they don’t think that will last forever. I can’t wait to squeeze his thunder thighs and marvel at his wrist rolls! You can do it, Coop!

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Look Ma, no lines!

Today was a pretty good day! Cooper is now done with his antibiotics and off TPN, so they pulled his PICC line! This makes it so much easier to handle him and give him proper snuggles. 🥰

I spent much of the morning/early afternoon with the lactation consultants, and we managed to find a somewhat unwieldy solution that will work for us at least in the short term to get him breastfeeding. It involves pumping for a minute to get the milk flowing and then quickly transferring to the boob with a contraption called a nipple shield which helps him grasp on. It’s probably not a viable long term strategy, but it works for right now. He nursed twice today and got an estimated half ounce each time. We were all happy with this progress today but I’m not convinced I could pull off the whole maneuver without their help. We’ll practice again tomorrow and hopefully I can get more comfortable with it.

Coop is not quite up to his goal feeding rate yet, but hopefully within the next few days he’ll get there. He’s eating about 50% by mouth and 50% by tube. We’re working to increase that but he just gets soooo sleepy when he’s eating. It really takes a ton of energy for our teeny little man. His oxygen saturation has been pretty good! He only dips when he’s super relaxed, and he’s been able to quickly bring it back up. He’s been on strictly room air for about 36 hours now!

Tonight was a little stressful for Mat because the nurse was a float nurse who wasn’t used to working with neonates. Mat felt like he was practically teaching her what to do! After Mat gave Coop about half the feed through the bottle, the nurse gave him the other half through his tube, but instead of spacing it out with the pump, she squirted it all in at once! Unsurprisingly, he spit up almost immediately. Poor little guy. Mat told her that she needs to use the pump to space out the feedings for him and she apologized and agreed. Hopefully she’ll do ok overnight. 

And that’s the Coop Scoop for today!

After the pride cometh the fall

Well, I was all excited about how great he was with breastfeeding on Saturday, but yesterday was a totally different day. Little Cooper was not about the breastfeeding life yesterday. We tried at two different feeds and he was screaming and fussing and just not at all happy about it. Then I was crying and apologizing and it just made for a hot mess. The nurses told me I was doing everything right and he just wasn’t interested. They had a couple of tips to possibly make it easier for him and we will try again today. 

I know a lot of people have trouble, but I’m just worried that given his situation, a bad experience or two will turn him off of eating orally altogether. 😭

There were plenty of positive steps yesterday, though. 

• On his two-week birthday he is up to a whopping 5 lbs 11 oz! 
• We took out his oxygen mid-day and he did great without it. He was still on room air when Mat left around 10:30 pm.
• He finished his course of antibiotics for the meningitis, so is finally off all antibiotics!

He enjoyed most of the rest of the day, aside from the feedings. We read to him and sang to him and cuddled the crap out of him as usual. 

In the evening we went to a class on how to parent/infant CPR that is a prerequisite for getting discharged. Still not sure how close we are (probably at least another week or two) but we figured we’d knock it out now. We did get to bring a baby home last night, but it was unfortunately only a blow-up model.

The Breast Day!

You guys...Cooper breastfed yesterday for about 5 minutes!!! The team approved nutritive feeding and the first time we tried he was too sleepy. We timed the next feed to be after a diaper change so he was nice and pissed off. It worked, and with some serious hand-holding from the lactation consultant, he latched and drank an estimated half ounce of milk! I know it may seem like a small thing, but with his issues and not being able to even eat for the first 10 days of his life, there was legit concern this wouldn’t be able to happen. I’m so proud of my strong little guy! He’s up to 5 lbs 9 oz now, by the way!

He continues to make progress. He is now more than halfway to his goal feeding rate and has seemingly had no issues with the transition (knock on wood!). They are planning to discontinue his TPN (IV nutrition) on Sunday night. He is currently taking half of his feeds by mouth and half through his tube. He is still pretty sleepy and he only lasted 45 minutes on a room air trial yesterday before he needed oxygen turned back on. We’ll keep trying daily to give him a chance to prove himself whenever he’s ready.

Mat, Mom and I managed to take a few minutes for ourselves yesterday in between shifts to take a walk/easy hike in the Red Butte gardens, just behind the hospital. It’s the first real exercise I’ve tried since Cooper’s birth. I was sore and exhausted, but it felt amazing to do something “normal” and remember that there is a world outside the NICU and my little pumping headquarters on the couch!

Coop did great and most of his bottles from Mat in the evening, too. Dad’s got a great touch with the bottle. Mom’s not so great with the bottle yet but she’s got two secret weapons under her shirt. 😜

At one point he got super jelly of the baby in the next bed because he has a light up aquarium toy thingy. So we got one for him too. Look at his little face while he takes in all the sights and sounds of this crazy toy!

I can’t wait until we can bust him out and I can watch him experience everything else the world has to offer!

Grow Cooper grow!

Our little munchkin is continuing to eat and grow! He has gained about half a pound since his birth. His feedings have gone up every day, as he’s been tolerating them well. I successfully fed him 13 mLs from a bottle last night! I might have been clunky and awkward about it, and needed approximately 750 pillows to get the positioning right, but I’ll take the W.  The nurse did say that the chairs there are not ideal for “short mamas” like me. 

We also got to try non-nutritive breastfeeding, which basically means that I pump until I have no/very little milk left, and then introduce my breast to him. He was a little interested; he put his mouth on it but didn’t try to suck. The lactation consultant said that’s a good sign that he at least interacted with it. I can try this once a day with him until he is able to try actually breastfeeding, once he’s up to his target feeding rate. 

He was quite sleepy today. He’s using a lot of his energy to grow, which is just great! They tried him on room air for a bit but he’s still not able to maintain his sats without a little help, so he went back on the oxygen. Again, if he needs some oxygen support while he puts on some chonk, that’s perfectly fine.

Once again, sir, that is not where your oxygen cannula belongs and you know it!

Eating machine!

Cooper had another encouraging day of eating. He is up to 15 mls of milk per feeding, and he seems to be tolerating it well. When he's awake he takes somewhere between 50-100% of the bottle by mouth. When he's asleep or when he doesn't finish the bottle, he gets the rest by NG tube.

Cooper heard I'd been having a rough couple of days and offered a hug!

He will finish his antibiotics for the meningitis on Sunday, and he'll have some more imaging to make sure his brain and gut look clear. It sounds like after that, his biggest barrier to discharge will be his eating. They'll need him to be off TPN (IV nutrition) and taking enough food entirely by mouth. They could also consider sending him home with the feeding tube, if that seems necessary/prudent. For now we'll just move forward taking it day by day, like we have been.

Coop is chillin' like a villain!

He also wants to know if you've bought your ticket to the gun show!

 

Celebrating Cooper but mourning Lucy

Starting with the non-Coop news - yesterday we had to say goodbye to our first baby, Cooper's big sister, our beloved dog, Lucy McBeaglepants. We had a wonderful 11 years with her, and it was incredibly hard and emotional to make the decision to let her go. While we desperately wanted her to meet her new baby brother, it just wasn’t meant to be. We did give her a blanket with his scent which she snuggled with for the past couple days, so she knew.

Of course, this made it hard to focus on Cooper, when we couldn't stop crying about Lucy. But we realized we needed to shove down our feelings to give our attention to him for at least a little while yesterday. They made an exception to allow both of us to come in together to meet with the feeding therapist. She showed us how to feed him a bottle, given his unique needs at the moment.

I feel like I need at least four hands to do this properly! When I came back in the late afternoon and tried it again, I just couldn't get it right, and he wouldn't suck. I handed him to the nurse and he drank it right down. I couldn't help feeling like a completely inadequate mother in that moment. I am trying to show myself some grace, though. I know this is their job, and I'm just learning. But it still doesn't feel good. I somehow expected that I would just develop some special mom-sense and figure out how to do this. But like anything else, the truth is that it probably takes practice. My mom reminded me of when I started marching band in high school and I was so stressed out that I'd never be able to march and play at the same time! 

Cooper was dropping his oxygen saturation again, so they had to turn the cannula back on. He wanted no part of it, though, so he was pulling it out constantly and putting it in places it definitely did not belong.

Your oxygen is not a headband, bro.

In terms of eating, he took all of his 5 ml bottles by mouth for the rest of the day! They bumped him up to 9 ml bottles at the 9 pm feed, and Super Dad got him to take most of it by mouth until he got super sleepy, and then they gave him the rest through his feeding tube. Of course, after his "big" dinner the little punk pulled that out too!

Not much else to report for yesterday. We asked the NP on yesterday what she were thinking about a potential discharge date, and she was much more optimistic and said maybe as soon as next week. So...I just don't know who to believe anymore! I guess the bottom line is that he'll come home when he's good and ready, and we should just stop trying to predict anything.

And now, please enjoy a video of Cooper with the hiccups.

His first bottle!!!

What a triumph! Tonight, Cooper took his first bottle of breast milk. It was only 3 mLs, but he actively drank it, and took all of it. We'll have to see how it settles, but it's so encouraging and heartening to me that he drank it. Cooper's amazing dad did an outstanding job feeding and encouraging him, and I got to watch over video chat. It was just incredible. 

The care team actually wasn't even going to try a bottle at first, and they were just going to start with a feeding tube. When I spoke with them earlier in the day, I voiced that I'd really like him to try the bottle first, and they agreed to let him try. I am just elated that his first sips of milk were fed to him through a bottle while being held in his dad's arms, rather than through a feeding tube. We understand that he won't always be willing or able to take a bottle (especially when he's very sleepy), and they will probably need to insert a feeding tube soon to make sure he is taking as much nutrition into his system as they want him to. But this was a great start! Mat reported he was awake and wired after his teeny first meal.

They will be feeding him 3 mL bottles/feeds every 3 hours through the night tonight. Tomorrow morning we have a meeting with the developmental/feeding specialists to go over the feeding plan. We've been warned that it's probably not going to be an easy or linear process, but we are all obviously committed to the goal of having him fully eating by mouth as soon as he can. We should get more details on the roadmap for that tomorrow morning.

He has been on and off oxygen today. He seems to do OK maintaining his oxygen levels while awake but not so great when he's asleep. They are of course continuously monitoring him and can easily start and stop the oxygen as needed. The care team did say that he may be on and off the oxygen for a long while, and they wouldn't be surprised if he struggles with maintaining his oxygen during feeding once the volumes come up. They even mentioned the possibility that we might need to continue occasional supplemental oxygen even after discharge. That's fine - it's nothing we can't handle. Although he does continually pull out his cannulas like a punk.

As for the anemia/blood count issues, his platelet counts have come up significantly, but his hematocrit is still hovering at 27 (pretty low for a baby). They will probably be giving him the Darbe shot (the one he got yesterday to encourage his body to make more red blood cells) approximately weekly for at least the rest of his stay. They will of course give him a transfusion if he drops to a critical level, but explained that they'd prefer that his body start making his own cells, since they will be more efficient.

We talked again about his length of stay, and a lot of it will depend on how the feeding progress goes. As great as we feel like he's doing now, his NP said there is still a lot left to accomplish/resolve before he will be ready to come home with us. She said she thinks his original due date (May 4th) is probably not a reasonable target at this point. Maybe we're looking at a week or two after that. But things change daily in the NICU, so we'll try not to get too hung up on dates.

Another day in paradise

 Nothing too exciting to report today with the Coopster. He has continued on oxygen, because unfortunately his oxygen saturation seems to fall without it. His care team doesn't seem too concerned about it. Our little guy has been fighting hard and enduring a lot, and he's just tired. If this little boost makes it easier for him to focus his energy on healing and growing, that's just fine with us.

They also gave him a shot today to help stimulate his kidneys and bone marrow to produce more red blood cells to help his anemia, so that's yet another thing we're asking his little body to do! Yesterday Mat said "he's so little, I can touch his ear and his butt at the same time with one hand!" Cooper is up around 2 oz from his birth weight, which is good. We're not sure though how much of that is water weight from the IVs and how much is real weight gain. Hopefully once they allow him to start eating, he will seriously bulk up!

Speaking of eating, they will hopefully start allowing him to have tiny amounts of breast milk on Wednesday, and will start ramping him up from there. It sounds like at first they start with an NG tube and then move on to bottles and finally get him to start breastfeeding. Hopefully we'll get more of a clear roadmap of his feeding plan tomorrow or Wednesday. 

Today he really seemed to enjoy his skin to skin. I'm amazed at how strong he is. He can pick up his head and can flop it from side to side. He doesn't have much control over it, but I'm just amazed watching him lift up his little head. I didn't realize that newborns could do that!

Let's see what tomorrow brings. We should get the results of tonight's blood counts to see how he's trending. There will also be an eval from GI to re-review the liver ultrasound and get the final sign off for him to start getting milk!

A little bump in the road

I had hoped this blog would be really boring, and every day I'd just tell you that he's doing better and better. But it seems that Cooper partied too hard on Saturday night and by Sunday morning he was lethargic, his temperature was a bit low, and he was dropping his oxygen saturation. They ended up putting him on oxygen for most of the day.

The care team told me that sometimes babies can just have off days, or days when they might be using more energy for a "growth spurt". They weren't terribly concerned, because he did respond well to oxygen and to the warming bed. However, he's on thin ice, and if he continues with his shenanigans, they will need to do a bigger workup. They're hard pressed to believe it could be an infection, because he is already being blasted with antibiotics for NEC and meningitis. 

Coop did perk up as the day went on. He finally got cranky when we did his afternoon diaper change, and he was awake and alert for a good while after that. 

While I was at the weekly "NICU 101" class they offer, Cooper pulled out his oxygen, because he's a punk. They let it stay out for a little while after I left, but once he started sleeping again, his sats dropped, so it looks like he's got it for another night.

It's probably not a huge deal, but it was a bit of a bummer seeing another intervention being added rather than taken away. He hasn't struggled with breathing before, except for right after he was born. But he's a tough little nugget, and I know this is just a tiny bump in the road. 

Getting more comfortable

 Hi again friends!

Yesterday was another mostly quiet day for our little guy. Some of his blood counts were a little down, but nothing the care team was overly worried about. He did pull a few shenanigans when he dropped his oxygen saturation a couple of times, but the NP threatened to put him on oxygen and suddenly he shaped up and stopped doing it!

The nurses do something they call CARES, where every 4 hours they change his diaper, take some measurements, switch the foot for the pulse-oximeter, take his temperature, moisten his lips, and probably a couple other things I'm forgetting at 5 am. They are great at involving us, and now both Mat and I can basically perform this ritual on our own. I think it's been really great to gain our confidence in touching him and especially changing his diaper. 

Here he is pulling his hat over his own eyes to say "No photos please!" Obviously it didn't work.

He got to video chat with all his grandparents and uncles, which was heart-warming and I think really healing for everyone to get to see him and how great he's doing right now. 

And that's pretty much it. 3 more days until he can hopefully start feeding - woohoo! I'm so looking forward to him being able to get something in his little belly. The nurses tell me that even though the TPN is nourishing him, he still feels his empty belly, and he may start to get crankier about it as he feels better and realizes he's hungry. It's a knife to the heart to hear the he might be crying in hunger and there's nothing we can do to satisfy him. 3 more days.

Another good day for the Coopster!

I’m delighted to report that Coop’s had another really encouraging day! His bilirubin is going down, which means he has hopefully ditched the blue lights for good. The anomaly on his liver ultrasound, a small portal vein, does not seem to be causing any functional issues. The developmental specialist evaluated him (as she does all babies in the NICU) and his strength, reflexes, and reactions are great. She will keep evaluating him every few days, but doesn't see any deficits at this time! She let us know that the best things to do for him right now are skin-to-skin contact, introducing and encouraging him to suck on a pacifier, talking to him, and making eye contact with him when he's awake and alert. 

He had some exciting new firsts today, too! They are now allowing for him to have the tiniest bit of colostrum (the first few days of breast milk) rubbed on his lips and cheeks to start giving him a taste. He responded really well to it - he eagerly sucked on it and actually tried to snatch the q-tip away from me!

He also got to bounce in a Mamaroo for a while.

 

He enjoyed lots of quality snuggle time, including skin-to-skin with Mom and Dad.

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We are unbelievably grateful that he seems to be feeling better, and that we're getting the opportunity to really get acquainted with this little bugger as he stabilizes medically. We know things can change, and that most people's NICU journeys are not necessarily linear, but we're feeling optimistic and encouraged by the improvements that we've seen over just the past 5 days. 

Now enjoy one more pic of Cooper being a bit of a derp.