Tethers: A Grandma’s Perspective

While I am immensely enjoying helping to care for and getting to know Teddy, who seems to get more alert and cuter with every day, I am also coming to appreciate the special challenges his new moms are facing.

One of the difficulties with caring for Teddy is that he can move only as far as the lines on his oxygen compressor and his saturation monitor reach. During the day, that gets him from a crib-like “pack & play” with his car seat in it to hold him (he’s supposed to be at a 45 degree angle most of the time because of acid reflux), which is located under the living room window by the porch, and across to the other side where there is a swing and mobile he likes. He also spends time in the rocking chair right next to the “pack & play” and on the sofa. In other words, he is limited to the small end of the living room that projects beyond the dining room wall and lines up with the porch. This makes it difficult when one needs to get to the kitchen to clean and sterilize bottles or to make up and heat a bottle or do other things like laundry or meal preparation. At such times he has to be left alone briefly, which is possible when he’s peaceful, but extremely difficult when he’s fussy, so I watch the time and try to anticipate especially the preparation of bottles (time-consuming, too, because the meds have to be measured out and added) in order to have them ready as soon as a hungry boy might vociferously demand one. Even moving around his limited area is difficult because one has to be careful not to trip over taut lines, which often get tangled.

He does move upstairs at night, but his moms have to carry up the heavy oxygen compressor, the monitors and an ice chest full of night bottles as well as his car seat, which is put in the crib up there.

He can be attached to small oxygen tanks when he goes out — to the doctor or for an occasional walk if it is not too hot outside. Then only one monitor has to go along, but the oxygen also has to be carried. He gets detached briefly every other day for his bath, which he loves.

As you can see, dealing with the oxygen is a pain in the neck, especially at times when he’s throwing a tantrum and his monitor is going off (most often, the cord is tangled or the probe on his foot is not working right). Overall, he’s doing very well holding his saturation level, and we all look forward hopefully to his next appointment with the pulmonologist (still a little over a week away) when we hope he may be given the go-ahead for no oxygen. It would be great if that happens before the move — the trip and life in general would be so much easier without his tethers!

Despite the challenges, all it takes is a smile or two from the boy to make it all worth it!

 

Day 156: Reflux

We all scream
We all scream

Thank goodness for doctors who finally listen to you about a baby in pain. Thank goodness for Zantac and Maalox. Thank goodness he is feeling better. I didn’t know that babies didn’t usually keep their hands in tight fists until he stopped this week.

Day 154: Medical, in pictures

Cannula, tubing and nebulizer supplies and travel oxygen tanks
Cannula, tubing and nebulizer supplies and travel oxygen tanks
Oxygen compressor and emergency oxygen tanks
Oxygen compressor and emergency oxygen tanks
Getting a nebulizer treatment
Getting a nebulizer treatment
Pediatric flowmeter and pulse-ox
Pediatric flowmeter and pulse-ox and beer
Bath. Non-medical, but super cute.
Bath. Non-medical, but super cute. We have a super-cute infant tub for him, but the oxygen tether makes the sink easier sometimes.
Sleeping in the car seat now to keep him at an angle that prevents reflux
Sleeping in the car seat now to keep him at an angle that prevents reflux, with a gel pouch to counter-act his head tilt preference that is mis-shaping his skull
Stock pile of his NICU discharge formula with his new reflux formula in the foreground (anyone need some Enfacare?)
Stock pile of his NICU discharge formula with his new reflux formula in the foreground (anyone need some Enfacare?)
Messy meds setup
Messy meds setup. Yes, he was prescribed Karo syrup
Instructions for feedings, new formula concentrations, and meds for reflux
Instructions for feedings, new formula concentrations, and meds for reflux. Scale to keep track of weight. He’s a little behind on what they want him to be gaining.
Med-sheet. A non-techy way to keep track of what he's taken and when.
Med-sheet. A non-techy way to keep track of what he’s taken and when.
Folder of Teddy medical documents
Folder of Teddy medical documents
Little bear
Little bear

Day 136: Home Sweet Home

Teddy is 136 days old, just shy of three weeks adjusted, and about a week and a half out of the NICU.

Life at home is good, if busy. We of course have many of the same concerns and challenges that all new parents do – multiple late night/early morning wake-ups, a plethora of dirty diapers, concern over whether he’s eating enough, concern over how much he is eating when one takes into account the cost of formula (that stuff is expensive!), etc…

Just a mom and a boy
Just a mom and a boy

There are a handful of extra challenges to having your very own micro-preemie at home, too. One is the multitude of different doctors appointments on the calendar, from his regular pediatrician to the opthamologist, pulmonologist, cardiologist, developmental specialists, etc. Thankfully both Abigail and I have been able to take some time off work to make those happen, and the news thus far has all been positive. Teddy’s ROP remains stable, his lungs remain damaged but clear, he’s growing at a normal rate, and he seems to be meeting appropriate developmental milestones for his adjusted age. We were particularly proud of his ability to roll over repeatedly from stomach to back yesterday during tummy time.

Gettin' swole
Gettin’ swole

Around the house, too, things are a little bit different from your typical baby, as Teddy is tethered to a large oxygen compressor that has to go with him any time he moves around the house. So he basically spends his days in the living room and his nights in his nursery, and not a lot of time anywhere else. We do have a portable oxygen tank for outside excursions, and in addition to his doctors appointments, Teddy’s been on a handful of walks around the neighborhood, which he thoroughly appreciated by sleeping through.

Ready for a walk
Ready for a walk

Teddy also has an oxygen saturation monitor, which, as predicted by the nurses, has become something of the bane of our existence, while at the same time granting us a significant measure of peace of mind. Contradictory enough? The peace of mind comes from knowing that we will be woken abruptly by blaring alarms should our little boy stop breathing. The bane of our existence comes from the fact that the probe (the “sticky” in actuality non-sticky part that wraps around his foot and takes his measurements) comes off ALL THE TIME, leading to false alarm after false alarm, sometimes at 2:14 in the morning.

Well adjusted animals
Getting along with the animals

Aside from those small challenges, though, we are a happy, complete family, thrilled to have our little boy home. The animals have adjusted fairly non-chalantly, which is good. We’re blessed to have Abigail’s mom, Marynell, staying with us, which makes a ton of difference in our lives right now. And we’ve been fortunate to have fun visits from HB’s friend Auntie Cohan from DC, our dear friend Maria from here in Ft. Lauderdale, and Mary Anne and Elena, our NICU primary nurse and her respiratory therapist daughter.

2016-06-16 21.03.20

Visitors!
Visitors!

Thank you for all your support and interest. As has been the case recently, fortunately no news is generally good news – we’re just your typical over-tired parents trying to keep our mini-human fed and happy. So far so good!!

Day 120: Four Months!

Teddy hit the four month mark today – yet another big milestone both in terms of his age and how long we’ve been making the several-times-a-day trek to the hospital to be with him. He’s up to 7 lbs. 14 oz. and looks like a “normal” baby, not even like a preemie anymore. Nurses keep coming over and marveling at how big he is, how well he’s doing, and how “stinking cute” he is. (Stink might be the operative word there – he continues to be a champion farter.)

Belated 17 week Bear with bear pic
Belated 17 week Bear with bear pic

Early this week, Teddy continued to struggle with both eating and breathing. He’d manage three or four bottles in a row, and then be so exhausted that we’d need to gavage a feed or two while he sat comatose on our lap recovering from the exertion. The doctors and NP’s would push him down on his oxygen, and he would desat and get pushed right back up. He wasn’t backsliding exactly, but he wasn’t making progress, either.

A tired Bear
A tired Bear

During most of his time in the NICU, Teddy has been part of a great “neighborhood,” with two other babies who were also 24 weekers and have been physically near him in the NICU for most of the past few months. We parents have become close, and one baby even shares Teddy’s primary nurse. Each baby faces his or her own individual health challenges, but the goal is the same for all three – get off the oxygen, eat all the meals, go home.

This week started with a bit of emotional challenge for us moms, as the other two babies seemed to be outpacing Teddy – going off oxygen, accomplishing more feeds – and one has even been preparing to go home. We are THRILLED for him and his parents, but also incredibly envious, and scared and frustrated for Teddy’s seeming lack of progress. The nurses have been assuring us that all is going well and Teddy will get there in his time, but both of us shed some tears in the unit this week.

Then yesterday rolled around, and Teddy started EATING! He is now on a roll of over 24 hours straight taking full bottles in less than half an hour. Our nurse told us that it would be like this – that one day we’d come in and he’d just be a different baby. And he was!

Look at this guy!
Look at this guy!

By yesterday, he’d been moved to “pedi-flow,” a much simpler form of respiratory support that is just straight oxygen with the amount of support determined by how much flow he gets. And by this morning, his nurse had bumped him down to just 0.1 liters (the lowest setting), and he was still satting in the high 90’s to 100%.

The most exciting news is that today for the first time the doctors used the “h word,” maybe as soon as this coming Monday! Our nurse even said that, given his low respiratory settings, there’s still a chance he might come home off oxygen.

Given his still increasing girth, they’ve approved him for “ad lib” feeds – he still needs to eat every three hours, but it’s up to him how much. If he wants 75mL, great. If he only wants 40, that’s cool too. The big stipulation is that, as he goes to ad lib feeds, he can’t lose weight. Glenn/Granddad commented the other night on how eating has never been a problem for Noonans, so hopefully that will be the case with the newest member of the family.

Ready to eat!
Ready to eat!

We are reminded constantly, though, not to get too excited about going home until he is literally out the door. Heartbreakingly, our neighbor who earlier in the week was anticipating heading home this morning had several bradies over night, and his discharge has been pushed back, perhaps by as much as five days. Hence the superstition around the “h word” in the NICU.

Please keep our boy – and his wonderful neighbors! – in your thoughts. Just don’t use the “h word”! 😉

Shhhhhh... don't say it!
Shhhhhh… don’t say it!

Day 107: Belated

Teddy turned 15 weeks on Wednesday and we completed neglected to mention it. He’s now 6 pounds 15 ounces. He’s still on 2 liters of oxygen and working on nippling. He’s on again off again, nippling as many as 3 times in a row and then being completed exhausted for half the day. He is however down to the 22 calorie formula (as opposed to the “high” calorie formulas at 27 and 24). This is the formula that he will end up going home on. One more small step! We adore him more each day, even as his reputation for flatulence grows and spreads wide in the NICU (yes, pun intended).

15 weeks!
15 weeks!

Oneweek

Day 101: 100 Days, plus one

100 days of Teddy. When you put it that way, what a wonderful span of time. Teddy is doing well. They moved him back down to 2 liters yesterday. We’re trying to move slower than last time we tried to move him to low flow oxygen when we also tried to move him to nippling at every feed (or “as tolerated”. Still a long story, still don’t feel like typing it out!). He got very tired last time and we’re trying to avoid that. We’ve also changed the nipple on the bottle from “the blue one” to “the white one.” The little details that make our lives… We’re hoping that he won’t collapse the nipple so much on the white one and get more bang for his sucking buck.

I want to be all reflective and eloquent about 100 days in the NICU with our boy. 98 days in the NICU without our boy. I had ideas in my head to tell you the things we’ve done so many times that they’ve become the texture of our lives. We know which scrub-in faucet is warmer than the other, which pattern on the robes means small and which means large, we know the names of many incredible men and women who daily keep us sane (ha!) and Teddy alive. The little things about Teddy that have grown to make him him – his silly faces, incredible farts, and still-so-quiet angry cries when he is hungry. There are a lot of things…someday!

In the mean-time we still use him as a vehicle for super cute clothing, which is after all half the reason for babies.

This is the pattern of gown for the larger ones.. in case you were wondering.
This is the pattern on the larger gowns. in case you were wondering.
There's a firetruck! On the butt!
There’s a firetruck! On the butt!

Day 98: 14 Weeks

Teddy is doing much the same as he was last week. He is still usually around 30-40 percent oxygen on 3 liters of oxygen, nippling every other feed and being extraordinarily handsome. The biggest difference is his weight, now up to 6 pounds and 3 ounces! Everyone who looks at him in the NICU, every time they look at him, comments on how big he is. He is just (as we keep saying) so baby! He no longer looks like a preemie, just like a small baby who happens to be on oxygen and have an NG tube. It’s extraordinary and delightful. He makes my every minute, even as I struggle a bit with starting work and being unable to spend as much time at the NICU.

14 Weeks! (Part 2)
14 Weeks! (Part 2)

 

14 weeks! (part 1)
14 weeks! (part 1)
One week (for comparison)
One week (for comparison)
Its tiring being so baby.
Its tiring being so baby.

 

Day 95: Mothers’ Day

I was expecting today to be bittersweet- missing Gabe and visiting Teddy in the hospital. Instead it was just entirely sweet. I slept in; Heather taking the morning shift after dropping her friend Laura off at the hospital. I took the noon shift with my mom, enjoying the “Happy Mother’s Day,” of each and every nurse that we saw. When we arrived at Teddy’s crib we saw that “Teddy went to art class.”

Mother's Day "Art Class"
Mother’s Day “Art Class”

The rest of our Mother’s Day was spent exchanging gifts, visiting Teddy and taking long, indulgent naps. Our visit with Teddy, after insisting that a grumpy boy eat, was particularly nice. He was awake and alert, and nearly completely able to hide all of his smiles from my phone’s camera.

We almost caught the smile here.
We almost caught the smile here.

You might notice that he has different looking equipment on his face. The doctors and nurses determined that he was getting too tired on the 2 liter low flow oxygen and moved him back to high flow 3 liter. Elena, the respiratory therapist, made a trip to the pediatrics department to get him these all-in-one cannulas that include the tegaderm and duoderm. While we don’t like that it further hides his cute cheeks, they stay in place better and are much easier to put on.

There’s a long story that I’m not going to take the time to explain about his feeding. Short story- they tried to get him to nipple every 3 hours (every feed) and he got very tired over the course of 24 hours. It was extremely evident- he didn’t finish the bottles, didn’t have any charming awake times and dark circles formed around his eyes. For now he’s been moved back to nippling every other time and he is doing much better.

These small setbacks add up to a boy who is unlikely to go home in the next 2 weeks, as we were told was a possibility a week ago. It turns out that our nurse was upset the doctors had told us that, when she believed it would be quite longer than that. Magical thinking goes both ways.

But we enjoy the boy any way we can get him. We think he enjoys his two moms. Happy Mothers’ Day!

Outfit provided by Uncle M
Outfit provided by Uncle Matt and Aunt Lori

Day 78: Just pictures

Renal ultrasound. He got this because of he UTIs, but everything was normal
Renal ultrasound. He got this because of the UTIs, but everything was normal
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Our corner suite, though we moved to be aisle today. That’s Kelly our night time primary.
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His PEEP went down to 5 today. A big step!
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Checking things out in the hat his Grammy made for him.
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The pile of meds before he starts his meal. The saline bullets are for suctioning his nose.

Our view when we are trying not to bother him

Our view when we are trying not to bother him

He gets some extra blankets if his temp goes down at his three hour check.
He gets some extra blankets if his temp goes down at his three hour check.