Day 56: Eight Weeks!

I said to Heather this morning that Teddy was two months old! She reminded me that, by the same magic that makes a 9 month pregnancy 40 weeks, he is actually 8 weeks old. Two months will come April 3rd. Either way, Bear pictures are due:

Eightweeks
Eight weeks!
Two weeks for comparison...
Two weeks for comparison…

Someone asked me today what the next milestones were for Teddy. You’re looking at one of them above (and in the previous post). He needs to be able to regulate his own temperature. The test for that is being able to wear clothes and/or swaddling instead of being naked and warmed in his isolette. We are testing him out on that. He’s doing well so far. Today he had a period of being way too cold after kangaroo time with me. They put him back under the heater for a while, but he’s giving it another try tonight. Please cross your fingers? Cause not only does the boy look really good in clothes (see above again, in a preemie onesie a graduated parent donated to the NICU) but he also really loves swaddling. It calms him down in a way that nothing else does. It’s also very good for his development; it keeps his limbs close to his midline, something that is great for him and is harder to do with gel packs and developmental care packages.

The other big step that we are looking at is starting to wean him off of the non-invasive ventilator support (NIV NAVA) and to just straight oxygen through his nasal cannula.  This is going a little slowly, but surely. He’s moved up and down on the support since his extubation, trending down. But I get unduly frustrated at setbacks. We started the day at 30% “o’s” and when I left at 9:30 pm he was back up to 38%; with periods of 44% throughout the day. For perspective, room air is 21%. So he isn’t on a lot of support, but he needs to be on less, with a lower NAVA level (something I’m not going to try to explain) before they can remove the breathing assistance and pressure support the NIV NAVA provides.

In the meantime we enjoy seeing so much more of his beautiful face and the increased interaction we get with him every day.

Love to you all.

Day 55 (belatedly): Oh baby

Teddy has had a string of good days. I am letting my guard down a bit and just enjoying his babyness, which is so very baby these days.

Ruth holding Teddy, who has graduated to new exciting forms of holding
Grandma holding Teddy, who has graduated to new, exciting forms of holding
Baby's smile at 32 weeks gestation, right?
Babies smile at 32 weeks gestation, right?
Please remember to plug in your baby before leaving.
Please remember to plug in your baby before leaving.

Day 54: Ch-ch-ch-changes

Abigail and I overlapped in the NICU this afternoon – not that common of an occurence – and she stepped out for a cup of coffee and to talk with the social worker around 2:50, thinking she had plenty of time before 4pm hands-on. Next thing I knew, Mary Anne was asking me to take Teddy’s temperature and “change his britches” so we could feed him. In technical terms, he’s gone from hands-on “Q4” (every four hours) to “Q3.” So 4pm hands-on is now 3pm hands-on, as a disappointed Abigail discovered when she got back!

The increase in hands-on frequency is being driven by a change from continuous feeds – basically a non-stop slow drip of formula into Teddy’s oral-gastric tube all hours of the day – to “bolus feeds,” or a larger volume delivered all at once every few hours. In other words a forward step towards eating like all the rest of us do!

His nurse and I noted how strange that must feel, to experience an empty stomach and a full stomach for the first time in your life. He definitely shows a little more typical newborn behavior (or the behavior that any of us have, really), getting a bit fussy as his stomach emptied out, and then going into a bit of a food coma when it was full.

The other big change today is that we started swaddling him, requiring him to do more of the work of maintaining his body temperature rather than relying on his isolette to do all the work for him. He seemed pretty content all bundled up, and looked darned cute, too.

File Mar 28, 5 05 16 PM
Awake and hungry!
File Mar 28, 5 05 42 PM
Full and passed out.

Other than that, he continues to do well today with that whole breathing thing. He had a little bit of a scary (for mommies) moment last night when a mucus “plug” formed, blocking much of his airway temporarily and sending him bradying like crazy. One of his wonderful respiratory therapists was able to suction the plug out, though, and he was back to perfect vitals immediately. Another one of those hazards of preemie life!

Yesterday was his first Easter, which the nurses mark (like all holidays) with a little arts and crafts project featuring his hand and foot prints. They were nice enough to make two – one for mommies and one for Grandma and Grandpa, who’ve been visiting this week.

Happy Easter from Teddy and the NICU staff!
Happy Easter from Teddy and the NICU staff!

Day 52: still breathing!

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The rare profile pic of the breathing phenom
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Extubated!

Spent the day watching Teddy breathe like a champ today. He had fewer desats than usual and only two bradys in the 9 hours I was there this morning and afternoon, one at the end of an ambitious kangaroo care time.  He is doing so well and various NICU people kept stopping by to sneak a peek under his blankets and share our complete joy at this biggest of steps. Dr Fuentes couldn’t contain his grin.  Please send all your most hopeful and encouraging thoughts to Teddy. As so many have said to him now, “we love you, keep breathing!”

Day 51: Extubated!

Teddy was extubated today!!!!

I’ll let the text conversation I had with Abigail tell the story, since she gave me a pretty good play-by-play while I was at work. (Picture me attempting to have a professional conversation with my assistant while my phone was blowing up and you’ve got the full picture from my side of the phone!)

 

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As you can probably tell, we are very excited today!

Post-extubation, Teddy has continued to do pretty well. He is admittedly not entirely pleased with the situation – I suppose that after seven weeks of knowing nothing BUT an ET tube, it could feel pretty strange to have that gone and instead have prongs up your nose. Also he now has to do a lot more work – sorry kiddo, standards have been raised!

He spent about thirty minutes completely bereft this afternoon, “howling” as much as he’s able to cry right now, which is to say that he makes noises roughly like a very small kitten. Even while pitching his worst fit, though, he continues to maintain his vitals like a champ.

I sat with him through all that singing lullabies and resting my hand on his chest until he finally settled down, and Abigail’s latest texts inform me that he is “Doing really well! Sleeping!”

So that’s our big news for today. More pictures to come soon… he is very drooly right now, and Abigail says she wants to clean him up a little before showing off his beautiful face to the world.

Thanks for all your good thoughts – keep sending love and breathing vibes our way!

Day 50: Seriously? 50?

It’s hard to believe it’s been 50 days since Teddy and Gabe decided to make their entrance! Somehow that seems longer by far than 7 weeks.

Teddy had a very good day! He only had one brady (that I know of) all day and had many fewer desaturations. He also managed to fit in an hour of kangarooing with Heather in addition to his eye exam and 6 hands ons (of which we make 4). His 48 urine culture came back positive for staph aureus. This leads us to believe that he actually has an infection, as opposed to more than one contaminated culture. So we’re extra glad that we started the antibiotics right away, rather than waiting for the cultures to come back. I’m sure that they, combined with the long-term diuretic he has now been put on, are responsible for his improvements.

But back to that one brady. Teddy had his first eye exam today. These are standard for preemies. What’s also standard for one as premature as Teddy is that they come back positive for ROP, Retinopathy of Prematurity, the reason for the test. Teddy’s came back as a “mild” case. He will be getting these exams weekly moving forward to check to see if it progresses. It may resolve itself on it’s own, or may require treatment at some point. The great news is that treatment has advanced a lot for this in the past years and the disorder is now almost always correctable. The not as great news is that there is nothing we can do prophylactically, we just have to wait and see. Also the exams themselves aren’t pleasant. They have to clamp Teddy’s eyes open for the doctor to examine them. While he receives painkilling drops, it’s still unpleasant- hence the brady. But he recovered really quickly, unusual for our sensitive boy!

Tomorrow Dr Fuentes is on. We will see what happens. Love to you all.

P.S. One last thing, I would love to know who is reading this… Sometimes it feels like we’re sending out into the void! It’s petty, but if you let us know, it would put a smile on our faces.

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Trying to decide whether to put his OG tube out, or just keep sucking on the marvelous binky.

 

Day 49: Seven Weeks!

Teddy hit the big 7 weeks today, and in celebration also hit a whopping 3 pounds in tonight’s weigh-in! Here’s his 7 week pic:

Bear making bear look small!
Bear making bear look small!
Two weeks for comparison...
Two weeks for comparison…

He had a very good day, which included a solid two hours of kangaroo time with Abigail, and only mild desatting, even with a good bit of time spent on his back. He was still pitching a fit about wanting to be on his tummy – turning bright red, making his mad face, kicking and flailing his arms – but as Abigail noted, without the desatting making his alarm sing, his arguments had much less weight and he didn’t automatically win today.

It turns out that his urine culture did come back positive for staph aureus, as did his yellow mucus from the other day. The trick with this particular bug is that it does sometimes live harmlessly on our skin, so it’s not entirely clear at this point whether it’s truly an infection, or simply a “contamination” of the samples. Regardless, other signs like the PDA point to the potential for infection, so Teddy is on antibiotics preventatively. 

One of the risks that preemies face (which I had not previously realized) is eye problems, so Teddy had some imaging done yesterday and has his first appointment with the eye doctor tomorrow. The exam is apparently no fun. They literally clamp his eyes open for it – he has a little bit of bruising today on his eyelids from yesterday’s procedure – so we’ve been told to anticipate that tomorrow might not be a great day for him.

The plan right now, though, is to hopefully try extubating him again on Friday after the eye exam is behind him and the antibiotics have had a little time to work. We’ll have our fingers crossed tight that this might go well enough that we can avoid the steroids!

In the meantime, wish us all luck for the eye exam tomorrow, and thanks again for reading!

Day 48: Briefly…

Teddy’s had two good days, likely due to the high doses of diuretics he’s been on to dry out his lungs.

We haven’t however started him on steroids. We are holding off for two reasons. First, many things have been adding up to equal a likely infection, including: high bands, wbc, his apnea and bradycardia and one more thing. That is the fact that yesterday Teddy had an echocardiogram that came back with a diagnosis of a mild to moderate PDA. This is the shunt in his heart that we checked for back in his first weeks of life. It was negative then; the fact that it has opened late like this could be due to the suspected infection. While we wait for blood and urine cultures to come back they’ve already started him on antibiotics.

We of course don’t want to start him on steroids if he has an infection, as they would suppress his immune system. Also, the fact that he has had such trouble getting off of the vent could be due to the PDA and infection, we will start to treat those first and see if he can come off of the vent before attempting steroids. Time is of the essence however, as there is window within which the steroids are most effective, and Teddy is currently in the middle of it.

The most and amazing and wonderful news though is that Teddy handles his Monday kangaroo care time with Heather so well that he has officially been moved to once-a-day kangaroo time! For these moms, who have each only held him twice, this is the best news!

First Family Selfie
First Family Selfie

It sometimes feels weird to share these medical details here, and I haven’t got into all of them. Thank you for thinking of us though, and I know a lot of caring (and smart) people are checking here to see how our boy is doing. If you don’t see an update, don’t worry, we will post if something happens. We are just trying to keep up with the day-to-day of life! Love to all of you.

Day 46: Breathing for a Living

We went from favorable vent settings and possible extubation on Friday to a junky x-ray, high doses of lasix and a sputum culture on Saturday. It’s weird the difference a day makes.

Teddy’s lungs are showing worsening atelectasis – the collapse of some alveoli within his lungs. They have been unable to wean him further on the vent and in the last two days have had to increase his support. He has chronic lung disease, not surprising as he has spent most of his 46 days of life receiving pressure from a vent. To put it in the way a super-tired person who isn’t a doctor might put it – this isn’t how lungs are supposed to work. They are supposed to create a vacuum to bring air in, not being artificially expanded as it is forced in. This forced air injures the tissue, and the body sends fluids to injured tissues. Fluid isn’t helpful in the lungs. So they are giving him a diuretic, Lasix, to try to dry those lungs out. But chronic lung disease is a long term problem. He’ll likely outgrow it as an older child, but it does greatly increase his chances of coming home on oxygen or nighttime vent support, and being highly susceptible to respiratory illnesses. We are lucky to live in a time though where these problems are something we will be able to deal with in the future.

Meanwhile we wait to see if his “pale yellow” lung secretions, suctioned out every four hours, mean that he is “being colonized” by some bacteria or another. If it comes back positive they’ll determine which antibiotic to treat it with and see if that helps him improve. If it comes back negative, then we will likely do a “basic workup” on him, checking to see if he is developing any other infections, and then start him on a steroid, dexamethasone.

This has been hard for us to come to terms with. We hate the thought of putting him on a drug that could cause long term neural development problems. But the fact of the matter is that his worsening lung disease could do the same to him. We need to start prioritizing getting him extubated, something the anti-inflammatory effects of the steroid will help. In fact it is often called “the magic pill” for the way it allows long-term vented babies to come off of respiratory support. As much as this is all worrying, still the thought of him being off of the vent is so wonderful that I’m almost eager to get the steroids into him.

The great news is that he has been steadily gaining weight this whole time, something that will continue to help him, and that works in his favor as we consider the steroids, known to stunt growth. Bigger is definitely better. As we are still continually told, he’s just really small. To us he looks huge, but at under 3 pounds, every gram he gains will add to his ability to keep breathing and reduce his apneic and bradycardic episodes.

Everyone tells us this is a roller coaster of emotions. They say its a marathon, not a sprint. I love roller coasters and used to do quite well at both middle and long distance running, but these sayings can’t really describe this day by day journey. I certainly can’t either though, so we will resort to them for now. That and what I say to Teddy every day when I leave him, “I love you, keep breathing.” Everyone has a job, we’re going to support Teddy in his.

Day 44: Day in the Life

TL;DR: Teddy and moms had a long day. He bradied a lot, but is still on low vent settings. We are well.

2:45 am: Heather wakes up. She feeds the animals, puts on the clothes she laid out the night before and leaves the house. She has a regatta in Orlando today and has to drive her kids there for their early morning racing against UConn, UCF and Jacksonville. I wake up. Go back to sleep.

5:00 am: I wake up to worry about things. Try to convince myself to just get out of bed. Fail.

6:00 am: I get up. Floss! Walk Tucker. Forget to make coffee before walking Tucker. Stick baby blankets in the washing machine.

7:00 am: Leave the house. Stop at 7-11 for coffee with  4 frou-frou  packets (our family word for vanilla-flavored corn syrup and palm oil masquerading as creamer). Tell myself tomorrow I’ll make coffee with real milk and sugar.

7:25 am: Good parking! Remember where you parked. It is different than where you parked yesterday morning, but the same as the night before, and Monday afternoon, and maybe Wednesday night. Walk into the hospital and say good bye to the nurses walking out the last night’s shift. See our favorite night nurse and try to work up the courage to ask her to primary Teddy from now on. Fail. Tell myself tomorrow I will ask Kelly to please favor Teddy above all others.

7:30 am: Arrive at the 4th floor door to the NICU. Wonder again whom the festive childish forest-animals decor surrounding the door and hall is supposed to cheer up. Neonates can’t see! Push the button. The nurse sees me on the security camera and says “Come on in Mommy.”

7:35 am: Scrub in. Surreptitiously observe the other mommy and her friend scrubbing in. They don’t get under their nails, but they do scrub for the full 3 minutes, and use a paper towel to open the door to get a scrub gown. I judge people who don’t use a towel. The door knob is the same one you used your dirty hands to open to get the scrub brushes. What was the darn point then!? (The system could be better, I admit)

7:40 am: Sign in. Sign form saying I’m not sick. Arrive at Teddy’s bedside. He is on his belly, facing right. He has Angelica today. Mary Ann texted her yesterday, asking her to take her two primaries while she had a day off. Mary Ann’s two primaries are currently the youngest (adjusted) babies in the NICU. Mary Ann, who has worked six 12 hour shifts in the last 7 days, may be a masochist. Angelica says he’s had a good night. No bradys! He’s satting well at 29% O2, NAVA level 1. His ventilator hasn’t gone into back up for more than 10 hours His blood gas Co2 and ph levels improved last night’s labs over the night before. We are closer to getting off the vent! I sanitize my phone and kindle, put them aside,  put my hand on his head and say good morning baby.

8:00 am: We flip Teddy to do hands-on. His oxygen saturation dips to 70, 60, 50% and then his bradycardia alarm goes off as his heartrate dips, below 100 and then to the 60s. He turns blue. We flick his feet, rub his belly, shake him and give him extra oxygen while Angelica manually gives him breaths on his ventilator. He starts breathing again. Slowly his vitals come back up. The alarms stop. He turns pink. It is his first unofficial brady of the day. It doesn’t count officially since we were touching him. I change his diaper. We settle him on his back. Angelica warms new formula and changes out the syringe. At 7.4 cc/hour our boy, who has already doubled in size to 1310 grams is going to get fat! I note that his tape on his OG tube and Edi catheter is very loose.

Teddy's loose tape
Teddy’s loose tape

8:30 am: Teddy’s respiratory therapist today, Ariel, comes to change his tape. Teddy bradies the moment Ariel touches him. “He is so sensitive. So sensitive. I barely touched him.” The therapist, who attempted to extubate him Sunday morning, looks at me as if I might blame him. I smile at him. “He is sensitive.” He and Angelica bring him back to breath and beat. They change his tape. I take a picture of his revealed face and later note that it is still a bit blue in the picture. This is an unofficial brady. I mention the possibility of steroids to Ariel. He bemoans the complications and side effects involved and says, “Be patient!” I tell him different doctors say different things. He shakes his head. He pats my hand resting on the isolette and asks me how I am. I say I am good.

Revealed face, slightly blue
Revealed face, slightly blue

9:00 am: Angelica gets coffee. Teddy’s alarm is going off. It has been going off every five minutes or so and I have actually started to ignore it a bit and just look at him and the fit he is throwing in his isolette. He is bright red and flailing his limbs in protest. There is so much to protest. I finally look up and see that he is in the low 60’s and as I look I see the extended wave form that means he is bradying before the numbers and alarms note the fact. The adjacent nurse hurries over as the alarm starts to blare. It is an official brady and she laboriously notes the details in his chart. She flips him to his belly. He starts satting in the high 90s, stops fussing, and falls asleep.

He always gets his way in the end.
Tummy. He always gets his way in the end.

9:45 am: Rounds. Dr Fig and Dr Tanfulla. They aren’t big talkers. They say the bradys won’t affect the decision to extubate. It’s a separate thing, more related to prematurity than his RDS.

10:00-12:00 pm: Mostly happy Teddy. I use two blankets to cover his isolette for extra light-blocking and leave him alone. I don’t read to him, I don’t sing. I lift a corner and am so grateful to watch him sleep with few desats.

Noon: Hands-on. Unofficial brady. Switch Teddy’s position to on his side facing right. It’s important to give him as many positions as possible to prevent his head from flattening. He doesn’t seem to understand this. He immediately goes back to cycling desats into his 70s and 60s. His alarm starts beeping, and continues for the next hour and a half. His vent settings stay at their hands-on-assist high of 34%. I can’t decide if I want the vent to stay low more than I want the alarm to stop going off. Good thing it isn’t my choice, and that Angelica has nerves of steel. The alarm of Angelica’s other baby, another 24 weeker not doing as well as Teddy, does the same. The newly arrived parents of the 37 weeker 2-day-old baby across from us look bewilderedly  from alarm to alarm and then back at their baby, 6 pounds and resting quietly under his cap of EKG wires. I try not to envy his 100% unassisted oxygenation. We all have our battles here.

1:30 pm: I go to lunch after reminding Angelica that I will be back, definitely in time for 4 pm hands on. (Did I mention that at his new! improved! weight! we are now at hands-on every four hours?)  Pizza and coffee in a Starbucks cup in the hospital cafeteria. This coffee cup is my pass to the Starbucks cafe after eating, where a leather seat and hipster music feel like so many other coffee stops.

2:20 pm: “C’mon in Mommy.” As I pass the window looking into Teddy’s row I see that his blankets are off and he has several people standing around him. I hurry through my scrubbing, but still take three minutes. And use a towel.

2:23 pm: Sign in. They already know I’m not sick. I try to walk collectedly to Teddy’s isolette. The nurses get upset if the moms are upset while they are doing things. “We can’t help your baby with you crying next to us.” I am the cool, calm mom. I never cry. Except Sunday. Ariel obviously remembers that. He looks nervous and guilty as I walk up to the two of them standing over Teddy’s opened isolette. “We thought you wouldn’t be back until 4 pm! He needed a new edi tube.” I am glad. If we fix something, maybe he will sat better. He has obviously just finished an unofficial brady. We settle him back in on his side, still facing right. His alarms goes off. Angelica’s other baby’s alarm goes off. All three sets of parents look at their phones, at the alarms, at each other… we too are in a cycle.

4:00 pm: Hands-on. Unofficial brady. On side facing left. I cover him up, but lift the corner and sing to him a bit. On this playlist are For Good, Lullabye, and Race You to Top of the Morning. His alarms go off. The other baby’s alarms go off.

4:15 pm: Angelica gets coffee. I notice that I’ve only read 10 pages in my book in the last 2 hours. I switch to Facebook. Teddy’s waveform lengthens. I am watching this time and call the adjacent nurse over well before the alarms start. I feel like a good mom. Official brady. Back on his stomach.

5:00 pm. I leave. I go across the street. I get a beer, Bell’s Two Hearted ale. I google “heartbeat” and “preemie,” looking for a sound app or device that may give him a supremely reassuring background noise. I come across this article instead.
Parents of Micro-preemies Face Heart-wrenching Decisions

It shocks me with its description of a day in OUR lives. I leave the bar, find my car which is not where I thought it was. I go home.

6:30 pm: Walk Tucker (who received a walk from a dogwalker this afternoon)

7:15 pm: Bring Tucker to dinner at a friends house. We have pizza. It is much much better than hospital pizza. Tucker gets second and third dinners and scares the crap out of a five year old. This is not Tucker’s fault. If you know Tucker you know this. Heather joins us straight from dropping off her kids at the university. Her team got second! This is great. Row2k.com reported that they got third. This is completely wrong. I consider bradying in protest.

8:15 pm: We are too tired to be company. Heather goes to the hospital. I bring Tucker home.

9:00 pm: Heather sees Teddy, who apparently lost weight today, likely due to the dose of Lasix he got last night. They have placed him on his back during the hands-on that we missed at 8 pm.

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Really, he always gets his way.

10:30 pm: Heather gets home. I tell myself to make coffee ahead of time tonight. There is apparently a fancy setting to do with this. Restart baby blankets in washer.

11:13 pm: Bed