Day 165 (minus one): Dear Gabe

Gabe,

An acquaintance of mine posted on Facebook once, asking if it was possible to miss something you had never had. She was referring to a serial dream she had been having in which she had a child, and the yearning she felt for that child when she woke and the dream ended. At the time, I thought of the pregnancy we lost before you and Teddy came, and the vast yearning I had felt for something that had not yet been mine. Now, I wonder if you were real. If you were a dream. You were here for twenty-three hours and twenty-three minutes. I was in recovery after my C-section for 3 hours. I slept for six. I visited with a friend for one hour. I stood outside the NICU, drinking my first latte in 8 months, for 15 minutes. I was with you for 4 hours. Maybe? For two of those hours you were dying. Where did the rest of that time go? Was the sum of my time with you enough to account for the whirling lack your absence has caused?

I think about you every day as I stare at your brother. He has the most engaging expressions; they’re brief but I catch a lot of them on camera – the one-eyebrowed surprise I didn’t think could have been genetic, the open-mouthed grin, the furrowed brow combined with perfectly pouted lip that conveys a sadness too deep for his age. His eyes are starting to fill with tears when he cries. He stares straight in our faces in wide-eyed contentment while we hold his bottles. He is such his own person. I look at him, most days, and think you would you have looked just like him, before any epigenetic drifting. You were 7 ounces bigger when you were born. Would you still be? I spoke about my doubts about what happened to you with one of my closest friends 7 weeks ago. This was before he said to me, “Would it have been easier if you hadn’t named them so quickly?” I forgave him for that; we wouldn’t have let you go into the unknown without a name, Gabe, even if we had waited before giving it to you. I forgave him right away, without telling him it needed forgiving, that you were a person. He said, “What would Teddy’s life had been if he had lived?” In that moment, maybe for three seconds, I also forgave myself for my flash of gratitude, that brief certainty that you had, in that the tide of invisible bleeding, already drifted so far from Teddy.

Two months ago I sat with the NICU social worker, and asked her if I had done the right thing for you. She was there when we interrupted the surging mass of doctors, nurses and respiratory nurses and told them to stop. And after, when we were holding you in a small, airless conference room, she said, “That was the bravest thing I’ve ever seen someone do.” Maybe it was self-serving to ask her about you after hearing that strange, drowning praise. Maybe I didn’t want to actually know, but rather wanted solace for my own questioning. She gave me a glass of water while you were crashing — water that I had agreed to, but never drank. And when I sat facing her after a long day next to your brother, and asking about my decision for you, she said, “The hardest thing here in the NICU is the babies who aren’t going to have real lives. They suffer for so long here and their brains are already gone. It’s terrible.”

Four months ago, Heather and I sat next to your brother’s bed with Dr. Fuentes. For so long that was all we did, counting up the days that he was with us. We sat next to him and watched him through reflecting, isolating glass. Sometimes I would say the only prayer I now know, “Please,” as he struggled to breathe and people worked on him, so similar to the way they worked on you. They didn’t do chest compressions on Teddy, but a couple of times they bagged him while all of the alarms — the oxygen saturation persistent warning, the heart rate high blatting, the isolette warmer screaming that the baby is cold — alerted staff about his condition. The first time I heard any of those alarms was that first morning when they all went off with you. With Teddy we found out that they are fatiguing, ever-present NICU presences, but after you I never could shake the dread they forced into my stomach and up through my throat.

That day, after we talked about Teddy’s blood gases and vent settings, Heather asked Dr. F., “What did happen with Gabe?” We had heard multiple different stories: that it happened suddenly, that it happened in utero a month ago, that it was an infection I had, that it was an infection you had. Dr. Fuentes stood there and drew a picture of what bilateral subdural hematomas would do to a brain. He told us they were unusual – he had only seen three or four in his career. He said you must have been hitting your head against my pelvic bone over and over when I was in labor. That hour I spent in bed, doubled over, thinking it had to be an upset stomach. That next hour I spent googling labor symptoms, because I couldn’t be in labor at 6 months pregnant. Because surely I could have stomach pains every three minutes. I’m not sure I forgive myself for that Gabe, if I let myself think of you during those two hours.

Almost five months ago, I walked down the NICU entrance hallway with my cousin, Liz (Doctor Scarlett, if you please). We were laughing about something, on our way to the sinks to scrub our hands for the required three minutes before seeing your brother. My hands were shaking, but it was a real laugh – kind of a giggle. I said to Liz, who 5 hours earlier had been yelling at the NICU doctors, “Is it weird that I’m laughing right now?” I thought I wasn’t feeling enough. I didn’t know it was stoppered; that it would build pressure and leak out for the next months. But I knew I shouldn’t be laughing when earlier that day I had asked the nurse if your hand should be that color, white when your skin was defined by its purpley thin redness. That nurse, looked at me accusingly, as if I hadn’t told her something about myself, while also yelling for the doctors who had just finished rounding on you. Three beds away, they looked over as I heard your vital alarms for the first time. Liz said that I was allowed to act however I wanted to act. She took my own white hand and we continued down the hall. I hadn’t yet heard that she had screamed at all of the staff that morning, when we walked out with you, “Why didn’t you start compressions earlier?” Liz’s PICU is different from NICU, so I don’t know if she was right.

Heather said that you were perfect. After you crashed. After they spent 20 minutes bringing you back. After you crashed again and after I told them to stop, After seeing Dr. F’s face looking up at me, his hands still on you and more hands between us reaching out with hasty syringes of epinephrine. His open, breathless face in its own immensity of relief. When they gave you to us, she said, “He’s so perfect.” You were. Google photo tags the pictures of your face we have from those moments with Teddy’s name. Your features were already defined, and they were also his. I sat in a NICU nursing chair next to your bed. You were wrapped in an aqua crocheted blanket, an obvious donation, and a matching hat was placed on your head. The nurse with the red curly hair handed you to me and to Heather. The nurse with the straighter red hair made sure the oscillating ventilator reached over to you without tugging on your throat. I didn’t know their names then, and it took me a while to identify all the people who were there that morning and associate them with the people we would come to know and love over the next four months. But I never forgot the nurse with the red, curly hair. Melissa. And then we got to hold you. And I told you how very, very proud of you we were. You tried so hard. And you were perfect.

164 days, 8 hours, 57 minutes and 54 seconds, Heather was holding you. I had both hands on you. We didn’t notice the white-sheet screens they had placed around us and the crowd of doctors and nurses around us. We didn’t know that they closed down the NICU in times like this. We found that out later. I found it out listening to another mother howl as they told her that her 23-weeker twins wouldn’t live. I flashed back to that minute with you, listening to her. We didn’t howl. I see in the pictures that we were crying, but I wasn’t aware of it. When I told them to stop, I handed my phone to my brother, who had finally broken the rules and come over to us from Teddy’s bed. He took pictures of us, holding you. He doesn’t have one of Dr. F making us hold you out away from our bodies several times. It feels like it was dozens of times, during those endless ocean-roaring minutes when you were alive and we were holding you, when we had to hold you out so Dr. Fuentes could listen to your chest. Check your status.

Later we brought you to a conference room and said good bye. We looked at your hands and your feet. They were white and perfect, even after all the damage to your chest and your head. We took pictures of them. You were our very first baby. We didn’t know exactly how very small you were. We just knew you were ours, and then you weren’t any more. Our perinatologist, came in the room and took a picture of the three of us. He sat quietly, then said this was the problem with twins. Liz hugged Heather hard when we went into that cinder-block room. I declined. I didn’t want to be touched. Heather said later, “I didn’t get that. I wanted to hug her forever.” I wanted to touch you. And then you were cold. And I didn’t want to. Melissa carried you away. She passed my brother, Mark, sitting on the floor next to the staff sinks with his elbows on his knees, hands on his head, head between his legs. We saw her at least five days a week for the next four months. She was the nurse manager. I don’t know if that is why she got you as part of her job.

I feel like I’m getting choppy talking about these last parts, Gabe. It feels like I should only talk about the time that you were actually in the world. It was such a hard time though. I want to talk about your feet pressing into my ribs. That you got the hiccups every 20 minutes for a week. That I rubbed your butt beneath my own skin and talked to you through a sub-chorionic hemorrhage and an erroneous diagnosis of Trisomy 13. You were ours before you came here. But it feels like you were you when you were here. It’s hard to talk about that and I get choppy, as if I can’t sail through these waters.

I count the days that Teddy has been here with us. Everyone knows I do. Teddy’s life is this public thing that has grown beyond us. I love that people love him through our words and pictures and his personality shining through them. It feels like it should be a public thing. His existence these five months later is a miracle. But what people don’t know about that countdown is my continuous subtraction of one day to measure your distance from us. The rivulets of your impact feel drier as they go further and further away from you. I count everything since you. Is it cliché to say that I try to make things count? Probably. But I think about you as I attempt jogging after 4 months of sitting in a hospital. I think about you when I get impatient with your brother screaming at 4 am. I think about you when the sky is beautiful and limpid gray right before full-night. I wish you could have opened your eyes. I wish we’d had you for one more hour. I wish I could express how much you were a person and how much we miss someone we never really had. You were a dream that we will keep having the rest of our lives.

But, we love you. I’ll always love you. I think of you in so many ways I’m not saying here. But I’m not going to write anymore. It’s always been an exercise, and not really for you. I’m ready to be done with it, and it doesn’t feel even halfway enough or 1/100 done. And yet.

I love you.

 

Mommy.

Gabe1IMG_20160204_115501

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 151: Adventures at 5 months old

Five months ago today Teddy and Gabe were born. 144 days ago days ago, at one week old, Teddy and his bear looked like this:

One week (for comparison)
One week (for comparison)

Today, in a very brief moment of sleep, Teddy and his bear had another companionable moment:

5 months old
5 months old

Teddy is obviously growing! Today at his bath he weighed 9 pounds and 9 ounces, eight pounds and 3 ounces up since birth.

We are loving having him at home, and life has certainly been interesting. I frequently find myself trying to parse our experience. Teddy doesn’t sleep much and is distraught over gas and pooping? Probably normal parenting. Teddy having a pediatrician, developmental care, opthamologist,  and pulmonologist appointment in one week? That’s preemie parenting. Struggling with balancing cuddling him and letting him figure out how to fall asleep on his own in the crib? The number of books on this tell us this is a universal problem. Moms not sleeping through the night because his pulse oximeter sensor has fallen apart (we only get one a month), is no longer reading correctly and is alarming every half hour? Yay, preemie! No longer swaddling because he’s starting to be able to turn over on his own? Parenting. Wondering if he will get tangled in his cords overnight? Yeah.

Then there was the night that his pulse oximeter stopped working entirely. We don’t even know when it stopped working; we brought him, his very heavy oxygen compressor, his pediatric flowmeter, and pulse ox up to the nursery and set him up, and only then noticed that the alarm seemed to be permanently on mute and was no longer monitoring his oxygen saturation and heart rate (and hadn’t been for who knows how long). We called the medical supply company and were told the respiratory therapist on call would return our call. In the meantime we looked online for the operation manual for our pulse ox monitor. We started following the steps for resetting the monitor until we came to this:

Repeat step #19 thirty-nine times
Step #19: Repeat steps 15-18 an additional 39 times

At that point we stopped and waited for the tech to call. She called and started with the first step from the online manual, “Did you turn it off and back on again?”

Needless to say, two hours later the technician arrived at our house. It turns out that the one-a-month sensor was no longer working.. at all. Our three hours of watching Teddy breathe and doubling his oxygen in the lack of any feedback about his oxygen saturation ended with her replacing a sensor that resembles a bandaid. She covertly left us two extras, and I proceeded to do some judicious Amazon shopping (at $20 a pop).

Medically Teddy is very much the same, but bigger! He is still on .05 oxygen flow, and the same prescriptions. We get a little impatient I admit. I can’t wait to see his adorable face without a cannula tape for more than the occasional hurried bath and tape change.

Really bad cannula taping job. We need to work on this.
Really bad cannula taping job. We need to work on this.
We're looking to upgrade to the cordless model!
We’re looking to upgrade to the cordless model!

He’s cooing and holding his head up for much longer amounts of time. He’s smiling and occasionally grinning. We’re getting to know him better and better and we are just as charmed and in love as we have been since day one. We also are frustrated and exasperated and tired and wondering what the hell we’re doing. This too has been happening since day one, but has an entirely different quality at home.

What's that you say?
What’s that you say?
Hallo!
Hallo!

We actually have news that isn’t quite as directly related to Teddy, though it will certainly affect his life.

My brilliant and talented wife is changing jobs, to be be head coach at Trinity College. This wasn’t our original plan. We had thought we would stay in Florida for several years as she coached at Nova Southeastern. This, along with everything else in our life changed dramatically and instantly when our sons were born. Hartford brings us within an easy couple hours drive of both sets of grandparents, several of my cousins  and aunts and uncles, and many close friends.

We’ve been so grateful and overwhelmed at the amount of support we’ve received in Florida. We found new friends and matured friendships in the past months. So many people came down and cooked and cleaned and walked Tucker and drove us to the hospital. But, we want to be closer to our larger network of friends and family as we navigate life with Teddy’s somewhat special needs. So Heather applied for the Trinity job. I’m so very very proud of her for being chosen for it.

We heard that she had gotten the job on Friday,  June 17th. Heather’s last day at Nova was June 24th.  The next Monday she flew up to Hartford to house hunt. I joined her at midnight Thursday night, leaving Teddy with my mom and a night nurse we met in her role as a NICU PCA. Friday we made an offer on the house of our dreams in West Hartford, and had it accepted.

Are we actually moving here??
Are we actually moving here??

The amount of life changes we’ve had this year is adding up to a kind of crazy amount: Babies, losing a child, hospitalization, new car, job change and move across the country. We’re about ready to be done with momentous moments for this year!

Thanks as always for following our adventures – we obviously have a bunch more to come in the next few months!

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 126: HOME!!!!

Teddy came home today! At 18 weeks to the day, he made his grand exit from the NICU, of course wearing a cape like the superhero that he is.

Yesterday, the doctors and NP’s decided that Teddy would definitely go home on oxygen, and possibly as soon as Friday. Abigail went in at 5:30am this morning to see his nighttime primary nurse, Kelly, in case we didn’t have another chance to thank her and say goodbye.

Abigail came home and both of us went to work; Marynell and Glenn went in to do Teddy’s mid-morning feeding. At about 10am, the doctors told Marynell that we should make a pediatrician appointment for Friday – this was really happening!

According to Marynell, everyone in the NICU went nuts, running around to get everything done that needs to get done for discharge – prescriptions written and filled, medical equipment ordered and delivered, car seat “challenge” accomplished with flying colors, hearing screen passed as well, insurance checked and double checked, final orders written, follow-up appointments scheduled…

Abigail and I returned to the NICU around 1pm for “discharge class” – an hour or so of our wonderful Nurse Practitioner Nicole jamming our heads full of last minute directions both obvious and not so.

We rushed home at 2:30 to meet the medical equipment deliveryman, who spent about 30 minutes training us on the use of a nebulizer, portable and non-portable oxygen sources, and an oxygen saturation monitor. NBD, just the machines we need to keep our boy alive outside the NICU!

Then it was just a matter of going back to the NICU to get the boy! With a portable oxygen tank and our sat probe in hand, we were out the door to head back to the hospital, with Marynell offering last minute advice to these very nervous and excited moms as we walked out the door.

It was a little bit surreal buzzing in and scrubbing for the LAST TIME after four months of the same routine over and over and over again. Everyone was all smiles as we walked in, with Elena and Christine, two of our favorite RT’s, joking about stealing Teddy before we could take him home.

Respiratory Therapists/Baby Stealers (note Abigail's photobomb...)
Respiratory Therapists/Baby Stealers (note Abigail’s photobomb…)

We changed Teddy into his going home outfit – a “Little Super Hero” onesie complete with a cape and a “mask” on his hat. More instructions on all his various medications from nurse Debbie, and then it was time to say good bye.

Little Super Hero
Little Super Hero

Elena disconnected him from the wall and attached his portable oxygen tank, and took him for his farewell tour of the NICU. After four months, nearly every staff member on the unit has interacted with him one way or another, so it literally took fifteen minutes or more as every single nurse, respiratory therapist, receptionist, nurse practitioner, etc., on duty today stopped to hug us, marvel at Teddy’s progress, and make us promise to come back and visit.

Our NICU “neighbors” showed up for the six o’clock feeds for their babies, and there were more hugs before Cristi, another of our favorite nurses, suggested we get a picture of our whole “cohort” together – Teddy and his two NICU buddies, out of their cribs together for the first and last time – definitely one of the highlights of the day.

File Jun 08, 8 47 09 PM
Teddy, Aria and Logan

I ran to get the car while Elena and Debbie walked Teddy and Abigail out. So far in his life he’s traveled from labor and delivery to the NICU, then two months later to a different spot in the NICU; this was his biggest journey by far, and he pretty much slept through it all.

File Jun 08, 8 45 52 PM
Heading home!!!

We did the classic new parent ridiculously slow drive home, and were greeted as we pulled into the driveway by several neighbors eager to see our not-so-little anymore guy. Then it was into the house to meet the animals (uneventful so far) and to finally do what we’ve been waiting for all along – to snuggle up as a family on our own couch.

So that’s where we are now! We couldn’t be more thrilled, though also nervous as heck, but what new parents aren’t?

There are too many people to thank for making today possible, though the one I do want to make special mention of is Mary Ann, our daytime primary nurse who has been with us for so much of this journey. She was off duty today, and it felt really strange to be leaving without her there. She was blowing up our phones all day with texts checking up on everything, and we know it was just about killing her to miss Teddy’s graduation. Mary Ann, thank you for EVERYTHING. We feel so so blessed to know you and to have had our boy in your care for so long.

I asked Abigail this afternoon if we’d keep blogging now that Teddy’s home, and her immediate answer was, “Of course!” I imagine updates may get less frequent as our journey hopefully becomes a bit more mundane. If you’d like to keep following Teddy’s story, though, stayed tuned. I’m sure we have many more adventures in store.

Family
Family

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 112 : 16 weeks yesterday

Teddy’s due date was on Monday! He should now officially be here, it’s a huge milestone. In fact they start counting his age differently in the NICU now. Until now they’ve counted his actual age the way we do on this blog, by days, but also by his gestational age- so what we would be saying if he were still in the womb. So on Sunday he was 39 weeks and 6 days. As of Monday however we start counting his “actual” or “adjusted” age. We will continue to use this “adjusted” age as our benchmark for his developmental goals. So, generally speaking, we’re looking for Teddy to be hitting normal milestones for a newborn and a 1 month old in the next month. Of course, he HAS had some more practice in many things than most newborns. He loves staring at and tracking his mobile,  he looks at people in the face and is likely starting to see more colors than the newborn’s black and red. He’s been doing tummy time for the past month. I’m proud to say that my “1 day old” actually rolled over on his own on Tuesday, from stomach to back.

2016-05-22 15.28.50 2016-05-24 08.29.20

2 day olds smile right?
2 day olds smile right?

I’m not going to try to be eloquent here (not, that I’ve achieved that in the past), but rather fit in as many facts in as little time as possible. Teddy is great! 7 pounds 6 ounces this morning. He’s a regular monster in the NICU these days.

He had his eye exam yesterday to check on his ROP (retinopathy of prematurity) and for the first time the doctor said that he eyes looked matured. Instead of saying “We’ll see him every week,” or “Every two weeks,” he said that they would want to see him again in 3 weeks. There wasn’t a mention of regular checkups! This is wonderful.

He still has CLD. He has chronic lung disease. Short and unacademic summary: He developed this in the weeks he struggled to breathe and was on the vent and it caused permanent damage to the lung tissue he has. The thing is that he’s going to grow a lot more lung tissue as he grows up, and the damaged lung will form less and less a percentage of the whole, until it doesn’t really affect him. But now it means that he is having a hard time weaning off of oxygen. He’s been cycling from 3 to 2 to 1.5 to 3 to 2 liters of flow for the past month with, until yesterday a consistent need for 30-40 percent oxygen. Yesterday saw him have some ability to do well in the lower 20s percentages. But this is accompanied by large desats and a very blue looking baby – something that until recently he had had fewer and fewer of. It’s frustrating, even as we cheer on the babies who have been on the journey here with him, we wish that he too was now off of oxygen. His lung disease means he has to work to breathe. It’s tiring. But they WILL send him home on oxygen.

Eating is tiring too. They WON’T send him home until he can take all of his food by the nipple. This isn’t true in the very long term, but let’s not go there – he’ll get there. But it’s slow. While he is now gestationally and size wise a typical newborn, he still can’t automatically do all the things we take for granted in newborns, like the ability to suck, swallow and breathe all at the same time. It exhausts him, and he is still unable to do it for all of his feeds. Right now, instead of nippling every other, or every third, we’re starting to nipple him any time he looks awake enough or shows interest in it (smacking his lips). Then, if he poops out during it, we gavage the rest via his NG tube. If he is blatantly too tired to try, and he is very good at letting us know this- he just won’t open his mouth for the nipple, then we just gavage him for a whole feed. This is what keeps him in the hospital.

But the doctors are preparing for him to all of a sudden “get it.” They’re talking about switching him to the type of oxygen machine that we would use at home. Its called a pedia flow (don’t hold me to this, I haven’t googled it yet, so I might even have the name wrong). According to his respiratory therapist the difference between this and the machine he’s on now is there is no blender – no machine mixing regular air with oxygen, which is what we talk about when we speak of oxygen percentages. This machine would provide him with pure oxygen, something they wouldn’t do until the risk of ROP was passed. The eye doctors proclamation of maturity was a big step toward this! His eyes are ready for pure oxygen without risking damaging immature capillaries. SInce it is pure oxygen, there isn’t a need for the flow that he currently has. Right now he’s getting 1.5-3 liters of flow, on the pedia flow he could conceivably only need .5 or even .1. Dr. Fuentes said that some babies, once placed on this different type of oxygen, wean very quickly, so I’m hopeful.

It’s daunting to thinking of bringing home a baby, our first baby for two people with very little experience with them, on oxygen. More than that, his immune system and especially his lungs will be very susceptible and fragile. A small virus called RSV, what looks like a minor cold in adults, could put him back in the hospital on the ventilator, or worse. This is why Teddy won’t be able to go to the wonderful daycare he and Gabe were on the waiting list for. It was right across the street from Heather’s office as a part of the university’s childhood development graduate program. He can’t be in the same room with other little children. So we will need to hire a nanny instead. It’s funny, these little things are hard… We will also have to be very careful about who touches him, and who comes in our house. While many parents of preemies totally isolate them when they come home, we really don’t want to do that. But to give Teddy the social interactions of friends and family that we want him to have, we’ll have to ask those friends and family to remove their shoes at the door, wash their hands immediately, sanitize their phones or place them in bags, and use sanitizer before touching Teddy. And we’ll have to trust everyone to not come in if they are sick, or have been around people who are sick. This is a big thing, and also hard.

But the thought of having our boy, our big, big boy home is still the most awe-inspiring miraculous thing. I hope hope that it’s soon. His nursery is all ready for him, filled with the gifts you’ve all sent, and family items passed down through the generations.

Tucker already knows his place in the nursery.
Tucker already knows his place in the nursery.

I have so much to tell you all, and no time these days. Thank you. Thank you so much for everything. It’s overwhelming the love and support we’ve received. Thank you.

Oneweek

16 weeks
16 weeks

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