Day 25

Much the same today. His 48 hour urine culture came back negative and his blood gases a little bit better. so now they’re going to try to wean him off the vent a little more aggressively They weaned his respiration rate by 5 and his O2 by 2%. I’m not sure if these numbers mean much to everyone, but it seems like we live by them these days. He’s a little pale, I think they’re going to tell us he needs his fourth transfusion. Strangely I always like when they tell us stuff like this, something we can treat!

He remains beautiful, if so different from our little bean of 3 weeks ago.

Teddyeyes

File Feb 28, 9 13 36 PM

Day 24

Teddy’s blood gases weren’t as good this morning, so no further weaning on the vent today. But we did discover a secret to Bear happiness today- sucking on his pacifier. He went for a full two hours with only one desaturation this morning, that being during the 4 minutes I removed the pacifer I was holding to his mouth. Of course that is the flaw in the never-remove-the-pacifer-plan – the fact that he needs assistance keeping it in his mouth.

Pacifier

The nurse finally suggested that it might be time to give him, and my arm, a break, and he went back to his usual cycle of sat/desat. We tried it again tonight, and again he had a happy time with high saturations while sucking on his paci. I can picture binky struggles in his future.

Teddy also reached a big milestone today, and had his picc line removed. He is now receiving enough formula that he doesn’t need to receive TPN, the main reason to have a central line. He’s also reached 850 grams! The lad is HUGE.

On a random note: We are so happy to have visitors coming to keep us company and help out. Heather is gone this week, but I don’t have a day where I’ll be coming home to an empty house. Grateful doesn’t cover it. Thank you, thank you so much. But, if you are coming to visit, please get your flu shot and consider getting your TDAP if you need it. Also if you are sick, were recently sick,feel like you might be getting sick, or have been living with someone who has been, please don’t come over. Any kind of infection would keep us moms from visiting Teddy, and more importantly, could be devastating for our boy. We are getting paranoid, we know, but in this instance we’re ok with it.

 

Day 23: Perspective

I have all these thoughts to share, but possibly not the energy to write them. But, in case I don’t finish, it was a good day. Our boy is good.

Teddy’s day started the way most days this week have: rough. It turns out the “gunky” has a name, atelectasis, which is scary and I shouldn’t have googled but, since I did, there is the link for all of you! He continued his pattern of marked desaturations from which he had trouble recovering. I went to ask our favorite respiratory therapist a question and, thankfully, she answered before I finished and answered a question I hadn’t been about to ask. She said that these desaturations shouldn’t affect his brain at all, that he could be a genius after all of this and that we shouldn’t worry about hypoxia. She also said that they wouldn’t delay trying to wean him off the vent because of his cycle of desats. She said that once his 48 hour urine culture came back negative, she was going to push to wean despite his troubling antics. This really put the past week in a new light and was encouraging.

The RT, Kim, also decided that the air leak he has on his vent may be causing some of his troubles. He’s had the air leak for some time, evidenced by the fact that he was making small noises and that his breathing was audible.They’ve been holding off on fixing it by moving him up to a larger ET tube for fear of causing trauma to his airway or scarring his vocal chords with a tube that was too large. Generally they don’t move them up until they hit 1200 grams and Teddy weighed in at 800 last night. But they decided to use a scope to visualize his airway and evaluate him for the large tube today, and upon that evaluation changed it out. It made all the difference!

He was a different baby when I went in tonight. He had already been weaned down to 40 on his oxygen and 45 on his respirations. He was desatting much less frequently and when he did so it was only down to the low 80s, from which he recovered quickly. He tolerated hands-on with minimal desaturation and just looked so comfy afterwards with his bed set with good boundaries to make him cozy and secure. And he was less wiggly, contentedly lying in his blankets without the twitches, contortions and protests that make his nurses say that he has great spirit, but really should calm down a little bit. I felt better than I had all week, likely just because he did as well.

He also has been steadily going up on his feeds, which should help him to grow even faster, the one thing that people consistently say he needs to be more stable. To add some perspective to the weekly photos that we post of him with his bear, I took it home briefly and took a contextual picture with our remote control thanks to a great tip from another preemie mom. Here is his three week picture next to the remote picture to give you a better idea of his size.

Teddy bear and remote
Teddy bear and remote
Teddy bear and Teddy
Teddy bear and Teddy

Heather left this afternoon to go on spring training with her team. It’s hard for all of us and we’re going to miss being our threesome. But when she gets back hopefully she’ll be able to see how much bigger Teddy is than those of us here seeing him every day.

Day 21: 3 weeks old!

Just a very quick update on Teddy’s 3 week birthday. He started the day with promising blood gases and the hope we could wean further, but 8 am hands on was difficult, more so than usual for our Teddy- who would prefer we not touch him.

I can’t help it, I always think of this:

We flipped him from his favorite position on his tummy, facing the left, to his back and he promptly desatted to the 50’s and took nearly 10 minutes to recover to the 80s.

It started a day of desaturations, without an obvious cause. Finally, late this afternoon they took another x-ray to see that his left lung is, in technical terms, gunky. They’ve started him on albuterol, manual vibration of his chest to break it up (chest physiotherapy), and positioning him with his left side up to allow the lung to reinflate.

We’re hopeful that this will help the lung to clear and we’ll get to starting weaning him off the ventilator soon. In the mean time, here is the weekly picture. We’ve had some requests for some size context for the bear! Today we completely forgot, but I’ll try to get my kindle in with it next time.

Not quite bigger yet!
Not quite bigger yet!

 

As always, thanks for all the encouraging messages and comments and support. We’re not great at always responding, but we so appreciate each one. Thanks for thinking of our little Bear!

Day 20: You’ve Got Mail!

We arrived home yesterday to discover the first piece of mail addressed to Theodore Roberts Noonan – his social security card. The government knows about him, so I guess he’s official now.

In all seriousness, there was something about seeing his name on a document on our kitchen table that made him seem a little more real somehow. It is at times disorienting and perhaps a bit distancing to only see our son in an isolette at the hospital. But he is in fact a real little person who will someday come home and live with us!

Teddy continues to be relatively stable on his ventilator, with the settings being reduced a bit today as they continue to try to wean him off the extra breathing support in hopes of extubating sometime relatively soon.

He’s had his small setbacks recently with the extra fluid in his lungs and the UTI, and continues on Lasix (a diuretic) and vancomycin (an antibiotic) for a few more days. His respiratory therapist today said his lungs sounded a little clearer, so hopefully those things are starting to resolve.

As Abigail mentioned yesterday, though, it’s becoming apparent that this is just a long, long, process, akin at times, as one of my friends mentioned the other day, to watching grass grow. His progress will of course be achingly slow and non-linear at times!

I’m heartened, though, by the baby who had been across the aisle from Teddy in the NICU for his whole first two and a half weeks. She was abruptly transferred from our section – Acute Care – to the more advanced Progressive Care section a day or two ago. She had been on an oscillator – a ventilator even more supportive than the one Teddy is on – for what at least seemed like weeks, and then suddenly came off that, straight to the regular ventilator, and then within a day or so to extubation and Progressive Care.

Apparently, when the ball gets rolling after all this slow progress, things can go pretty quickly sometimes, too…

Hopefully Teddy will be similar – amassing minute gains in a seeming steady state for a while, and then having a big breakthrough at some point. At any rate, the grass keeps looking ever so slightly greener every day.

Sleep tight, Bear.
Sleep tight, Bear.

Day 18: He’s Just Really Small

This morning Teddy looked great. He had good color and during hands-on pushed our hands away vigorously with both hands and feet. His 24 hour cultures had come back negative, bilirubin acceptable, his sugar was good and they had restarted his feeds successfully if back at the beginning amount. He had a great poop (the things we now talk about, but really this was a handsome lookin’ poop-the color, the consistency!). But they had also upped his vent settings yet again. Now the vent supported him with 35-38% oxygen and 50 respirations a minute and he continued to desat down to the 70s and 80s every couple minutes. For comparison, when Teddy was a couple days old he was at 21% oxygen with 20 respirations and breathing over the vent by as may as 30 respirations a minute on the SIMV setting. Now he is doing what they call “riding the vent” with the setting no longer intended to wean, but rather to provide full support on the “pressure control” setting.

I keep asking about this, his continued need for more and more support.  Along with the multiple possible reasons we’ve discussed here already (NEC, infection, anemia, fatigue, edema..) the nurses and doctors have a pretty consistent answer to my questions about his need for vent support. “He’s just really small.” They want me.. us… to understand that this is the process. Everyone has said this. “Five steps forward, two steps back.” “It’s a roller coaster.” “Just take it one day at a time.” And they say that he’s really small and that we just need to accept that humans this small need support, and don’t breathe on their own most of the time and go up and down on their saturations and that as they get bigger they get better. Then they show me pictures of 24 weekers who turned out great.

They say this to us every day, several times. Different people say it to me in different ways. The pictures are starting to repeat among the nurses. I keep thinking, “Yes, but what do you do about it?!” But sometimes I need to just accept it and look forward to the next day. He’s so very small, and that’s hard, but he’s going to get bigger. (710 grams!)

The “good” news today, other than the fact that we got to see our gorgeous son today, is that late this afternoon his urine culture came back positive for a UTI. This is treatable! It might be the reason for his desatting! He’s already on antibiotics, and they’ll continue treating it. And two mommies are going to be extra careful about cleaning certain areas during diaper change.

In other mommy news, we treated ourselves  and our recently arrived Aunt Kathy to our favorite breakfast place today- a bit of normalcy after the craziness of the last three weeks. We were nervous to go. They had been excited about our upcoming twins and we dreaded breaking our hard news. But we hugged, and there were tears, and then it was again our favorite place with wonderful people, incredible food, great drinks (a bourbon blast was provided without asking) and the beautiful atmosphere. It was good, and they didn’t let us pay for our breakfast as we celebrated Gabe and Teddy’s birth. Thank you ChillBar, for being another home here.

Small but mighty
Small but mighty

Day 17: A Better Day

Teddy seems better today, though still having a few cases of intermittent desatting (but no bradys all last night or today). He seems to have responded well to the transfusion yesterday afternoon. He looks ruddier and was quite active all night. His nurse today who hadn’t seen him in about a week remarked on how much he’s grown and developed even in that short time.

He’s still on antibiotics as we wait for the blood and urine cultures to return, but they did restart his feeds today, though he’s back to 0.5mL per hour. One small baby step at a time.

His x-ray this morning showed no signs of NEC, but did reveal some “haziness” in one of his lungs, indicating the presence of fluid. So he’s on a diuretic to try to relieve that, in hopes that that’s another small piece of why he struggled a bit yesterday.

Overall, the doctor seemed pleased with his progress this morning.

Here’s today’s picture – truly I think the best one we’ve taken so far of our little guy…

Here's looking at you...
Here’s looking at you…

Day 16: A Long Day

It’s been a long one. Between the two of us (and mostly Abigail), we’ve been at the hospital non-stop since 7:30am this morning. Abby is still there to do evening hands-on, so I’ve got the job of writing the update.

After several days back of having Teddy back on the ventilator, we still didn’t have any concrete answers for his continuing and worsening desatting episodes (intermittent drops in blood oxygen saturation from the low 90’s where it should be to as low as the 60’s or 70’s) and occasional bradys (spells where his heart rate dips below 100bpm). We also had a new symptom last night, as he vomited a couple times.

The vomiting was a particularly worrisome development, as it can be an indication of necrotizing enterocolitis (NEC), which is basically cell death of intestinal tract tissue that can lead to perforation and eventually sepsis.

I am incredibly proud of my wife and grateful that our little boy has such a strong mom; she refused to let the staff off the hook with non-answers during rounds this morning, which resulted in a bunch of action all day long.

First they stopped his formula feed and returned him to IV-only nutrition to give his digestive tract a break and prevent or forestall any developing NEC.

Next, they did a chest x-ray, which showed clear lungs but a misplaced ventilator tube. The initial hope was that fixing that would end the cardio-respiratory episodes and perhaps even allow them to extubate Teddy within the day.

Unfortunately, he continued to desat and brady even after his tube was re-placed, so they followed that up with blood and urine tests, which meant placing an IV line and a catheter – not an easy task on a 1lb 8oz, 33cm baby, or a fun time for anyone involved.

The blood and urine cultures will take some time to grow, so they put him on preventative antibiotics in case there’s an infection of some sort. That doesn’t seem to be the working theory of doctors or nurses, but it’s good that they’re checking.

The CBC blood test did reveal low “H&H” levels (hemoglobin and hematocrit), which provided a strongly plausible explanation for the bradys and desatting. As a result, Teddy got his third blood transfusion a few hours ago, and Abigail’s last report is that he seems to be responding well, though they still have his ventilator settings up a bit to let him rest from what was a lot of poking and prodding over the course of the day.

Anemia is apparently relatively common in premature babies, and something that they eventually tend to outgrow on their own, but right now the effects can be pretty devastating. Low oxygenation can lead to NEC, as an oxygen-deprived body will shunt blood from the digestive tract to protect more vital organs. Fortunately, the transfusion should make a pretty drastic difference in his body’s oxygen-carrying capacity.

So that’s where we are tonight – waiting to see if anemia has been the main cause of his recent challenges, worrying about the possibility of NEC, and hoping that the blood transfusion does what it’s supposed to do. We’ll be sure to keep everyone updated tomorrow – in the meantime, please pull for that blood to do its thing!

One sidenote – I know I am extremely grateful that there is plentiful blood available for Teddy’s transfusions. My mom even donated last week in Teddy’s honor. (I tried but unfortunately, like my son apparently, I am too anemic). If you have the ability and the opportunity to give blood, please think of our little guy and the help he’s receiving from goodhearted people like you.

Day 15: You Suck!

Our big news today was that Teddy sucks… pacifiers! Even with his ventilator and feeding tubes, he can still fit a pacifier in there, and he spent a solid 40 minutes tonight happily sucking away. It’s early for now, but this will be an important skill in a few weeks when he’s ready to start eating from a bottle. And it’s darned cute, too.

Teddy Sucks Thumb
Click here for video of a boy and his pacifier

Not much else to report today – he’s still on the ventilator, continuing to go up on his feedings, and had a big old poop, which at this stage of the game is an exciting event.

We are very fortunate to have Lee visiting for a couple days, and she’s been busy with some insane projects like cleaning the disgustingly moldy freezer in our garage. There probably aren’t enough thank you’s possible.

Day 14: Two Weeks Old!

Teddy turned two weeks old today, so of course we took the obligatory side-by-side teddy bear comparison picture for posterity.

Two weeks!
Two weeks!

We haven’t seen terribly noticeable growth just yet, but he’s only been on legitimate feeds for a couple days, and the amount is still going up each day as they test to make sure that he’s handling each increase okay. So far so good, though. He tipped the scales at 690 grams last night (1 pound 8 ounces), up from 610 at birth, so he’s definitely starting to grow.

He’s finally opening both eyes at least a few times each day, too, much to the delight of his moms. Today’s nurse thought she could see some blue, to which this (non-biological) blue-eyed mom gave a big fist-pump.

That's blue, right?
That’s blue, right?

Otherwise, he continues to be pretty much status quo for the time being. He’s still on the ventilator, as he still has intermittent “de-satting” episodes. Being both over-achievers and serious worriers, his moms have had a million questions for the nurses about what’s normal and expected in terms of his respiratory function at this point, and they were especially patient and reassuring today, reminding us that he *is* only 690 grams, that his oxygen feed is quite low (he never requires more than maybe 35% oxygen, which is way closer to 21% room air than to the 100% oxygen that some preemies require), and that he is just needs time to get bigger and stronger.

It was sweet that the nurses were even able to pull up videos and pictures on their phones of past patients to tell us about – a little boy born at 330 grams who is now two years old and climbing stairs; a little girl flown in from one of the islands barely clinging to life at 480 grams who is now 18 months and learning to walk. They were obviously very proud and attached to these children they had spent so many weeks and months tending to and getting ready for the world. As the attending doctor today told me, “You may think they’re yours, but we adopt them. He’s ours while he’s here!”

Our boy
Our boy