Checklists and St. Nicu

David has a checklist of criteria to meet before he can be discharged from the ICN. To begin with, he must be able to regulate his body temperature in an open crib, which he’s been able to do now for two weeks. We take his temperature every three hours to monitor this and he’s been in the 36.5-37.5 range every time.

He needs to be free of any apnea and bradycardia episodes for 7 days. Those are the “As and Bs” I talked about discouraging him against in one of my earliest posts. He’s had a daily dose of caffeine since the day he was born. This helps to stimulate his brain enough to remind him to breathe; it’s basically a daily morning espresso shot to keep him “awake.” The docs discontinued his morning caffeine this past weekend and his 7 day apnea countdown has begun. He’s now on day 5 of 7 with no episodes. I sort of hate that I just wrote that because it sounds like a jinx to me. But that he hasn’t had an apnea episode is a double dose of good news; it means his brain is self-stimulated and he’s not a two-month-old caffeine addict.

Most importantly he needs to feed by mouth, either by bottle or by breast or by both. He can’t go home with an NG tube and we certainly don’t want him to go home with an NG tube. David unfortunately won’t feed well by mouth until his oxygen needs decrease. It just simply stresses his breathing too much. It’s a discouraging process, that’s for sure, and the doctor encouraged us at the beginning of this week to remain patient in the coming weeks, because David’s not going to make any quick moves forward. His lungs are damaged from all the intubation and ventilator interventions that he needed for his bronchopulmonary dysplasia. He still has a lot of healing to do.

Fortunately babies can grow new lung tissue until the age of eight. So the good news is that although David will likely go home on oxygen, he’ll outgrow this in childhood. This winter will be the hardest test for him, and even the commonest of colds can be a real danger, so we’re advised to take all precautions. If that means placing Purell pumps in all rooms in our house, so be it. We’ve been through a lot over the last 60 days; we can handle a few more months of obsessive ethanol treatment.

We had a wonderful Christmas morning with David. We thought so at least. David wasn’t as excited about our “First Christmas” photos as we were.

So Graham did what he could to console him.

And once he was consoled we convinced him to put on his Christmas sweater.

He finally agreed, and we thought he looked dashing.

An anonymous graduate family placed stockings at each bedspace Christmas night. Inside we found this, which we thought was so brilliant we wanted to share it. I hope I’ve given you enough of a preemie-lingo lesson to understand it. But if not, I apologize, and then take my word for it, it’s pretty great.

Good health to you all as we enter the New Year.

J & G & D

Another Hospital Holiday

Since we couldn’t bring our Christmas tree into the ICN to set up next to David’s crib, we got two trees this year. This one’s from the McLaughry tree farm, compliments of Buff. It’s the opposite of premature as far as Christmas trees go.

And we found this one at CVS. It’s a little more manageable, and a little more little, but we love it no less.

David wanted to get a few gifts for his three primary nurses, so we wrapped them and put them under the tree next to our family picture taken with Santa yesterday.

We’ll be spending Christmas morning in the hospital with David. We’ll probably read a few Christmas stories, play some music, open the gifts he’s received, and then just lounge around. We think it sounds pretty nice.

When we told David our Christmas plans, he said,” just wake me up when you put the milk out.”

Happy holidays, all.

J & G & D

Rooting Around

It’s hard to post about David’s progress over the past week without letting you in on some intimate details. David’s next big step in life is learning to feed by mouth (instead of by tube). And he can’t even dream a little dream of going home until he can do this. So over the past few days we’ve started our “breast visits.” I place David skin-to-skin on my chest to let him root around before giving him his tube feeding. It’s a bit of teaser, if you will, to get him to make the association in his brain. Being a beginner I wasn’t quite sure what “rooting around” would be like. So the nurse placed David on my chest and then she left me alone behind the curtain to help another baby at the other end of our pod.

At first nothing happened for us. We were just bonding. And breathing, of course, both of us—that’s always been our main focus. Then David started to lick his lips and move his hands toward his mouth, so I decided at these cues to wiggle him closer for a visit.

I’ll tell you openly, this was going to be my big maternal moment. I wasn’t able to hold David immediately after he was born, for obvious reasons, or even that first full day of his life, and perhaps even the next. I can’t remember when, exactly, it was that I held him first; I just remember how they placed him on my chest and how fragile he felt, and how still. He was so small, and breastfeeding then seemed a lifetime away.

David is now twice the size he was then. He’s over 4 lbs. A lifetime has not passed of course, but forty something days of looking at and touching David through plastic holes and taking him out to be held only with the help of two nurses, and pumping through the night with no baby anywhere near, and filling a chest freezer full of milk has made it feel like ages.

What I’m saying is that I was prepared for this. But as I moved David closer for a visit he started flopping his head from side to side, frenetically, like a fish, using his face as a pivot and loosening his nose prongs as he did so. I didn’t know what I should do, but I thought this must be rooting so I let him flop away until his nose prongs came out and his oxygen needs went up, and all of the sudden the monitor was beeping and flashing red which meant he was desating big time, and by then (which was maybe a minute total) he had managed to get himself into a position that looked like he was one of those body contortionists, with his face planted into my chest and his back pushed into the air, one leg up by his ear and his hands who knows where, so when the nurse came rushing in and was like “whoa, what’s going on?” it made me sort of feel like I had failed my first real test for maternal-ness.

We’ve both gotten better at it since then. It took a little coaching for me and some repositioning for David and we did great. We won’t be breastfeeding for at least another week or two, or until David’s breathing improves to the point when he can feed and breathe and not tire out.

He's flat out from rooting.

 

We dressed him in one of the hats we made. He wasn’t impressed with our fashion show and I’m not sure if the bow is really his thing.

All in all, all is good. He’s fattening up for Christmas and longing for the New Year.

J & G & D

Moving Day

David is now 45 days old; he’s also 33 weeks and 3 gestational days old, which means I should still be carrying him for almost another 7 weeks. I’m not sad about this anymore. I’m not thinking in terms of absence, of something that is no longer “in there.” It’s just language, I know, but there was a point this weekend when I stopped thinking of David as gestating, and started thinking of him as simply growing. This might not seem like a big difference, but it is, because my no longer longing to scoop him up and tuck him back in has had a profound effect on how I approach the everyday. What I mean to say is that, this weekend, in a quick, epiphanic moment, I realized that he’s out. He’s out on his own in the open air, and he’s growing, just like a newborn baby should.

This shift in perspective probably has something to do with the fact that David graduated to the carpet on Saturday night. Yep. He moved in with the big babies. He has his own room now (sort of), with his own space and a window view. He’s also been moved to an open crib. The days of Mr. Toaster Head and the Incubator Adventures are over. I will admit, when Graham and I found out on Saturday evening that David would be moving, we felt a slight sense of nostalgia. Strange as it may sound, we had grown accustomed to David’s generic, uniform bedspace on the tile floor, because we had spent 42 days there with him, and the announcement of his relocation came on sudden enough that we actually missed it for the first few hours.

Holding hands before the big move.

Heading closer to home. No joke. In his new bedspace he's about 60 feet closer to Vermont.

Saturday was a big day to begin with. We started out with a lesson in infant massage and stretching techniques with the developmental therapist. We learned ways to stimulate David’s digestion and to help strengthen his bone growth. David had a test done last week that showed he’s at risk for slightly less than adequate bone development at this point. His feedings are now being enhanced with extra calories, vitamins and minerals, and we’re trying to give him the therapeutic touch he needs to help him grow.

Later in the day we gave David his first real bath in a bathtub. He needed it. We went to Dan and Whit’s mid afternoon and bought him some miniature rubber duckies for the occasion. The nurses rolled the tub right up to his bedside, plopped him in and away we scrubbed.

He didn’t love it. We had to scrub then oxygenate then scrub again and the whole process was a little cumbersome. But after the bath he fell into a deep, restful sleep and while he slept we wheeled him into his new neighborhood. And when he woke up nurse Sam was back on duty, so all was good. And he liked the new air so much that he came off his CPAP yesterday and was placed on high-flow oxygen. This is a big step forward. For one thing it frees up his mouth considerably, and although he’s still so small and young, this will allow us to start the initial introductions to breastfeeding.

We do feel more at ease now, but we’re still cautious with our enthusiasm. And we have to expect another 45 days here. But what I tell myself is that although we might wish to be home, we’re experiencing many of our “firsts” in the ICN, and we’re learning much more about David at this stage than we would have otherwise learned.

And with him doing pretty well, having him out now feels like bonus time.

J & G & D

A Slideshow

Last Thursday my mom traveled up from Virginia for the second time since David was born. My mom and Tina Ashton originally planned a small baby shower to be hosted on Sunday December 4th, but with David’s early arrival it changed into a “Welcome” shower. And eventually, with the bright idea and help from some of my mom’s craftiest friends, it evolved into a wonderfully low-key preemie hat and prayer flag making party.

It was just what I wanted and needed—a chance to see a good charge of great women in one setting. A chance to sit around, craft, and chat.

We worked on two projects: making hats to donate to the ICN at Dartmouth and a prayer flag for David. Thanks to my mom’s friends Betty Richmond, Connie Davis, Dana Krusz and Sheree Kiser for doing the initial sewing for the hats in Virginia. They were a hit at the shower and they’re now a hit in the ICN. My mom sent me a poor quality phone picture of the prototype a week before she came north. I thought the hat looked nice (I couldn’t really see it), so I was completely unprepared for the (and I’m really not big on this word) adorableness of them. They’re adorable.

I splurged and took a few for David.

Prue Fisher conceived the idea and organized the making of the prayer flag. She brought her sewing machine to the party and with paint pens and markers and fabric scraps we all created it there. At the end of the shower, we hung it in the middle of our  living room.

I have read every single one of them. They’re funny, touching, artistic—all things we hope David will be, and this prayer flag is already teaching him how. Thanks for the “thoughtful” gift, Prue. We’ll use it one day to help teach David to read.

Here’s a slideshow. “The Grannies” worked their magic and showered me with a pleasant and vibrant afternoon.

The Grannies, from left to right: Ginger, Prue, Meg, Heidi and Tina

Heidi painted, ribboned and had a mattress specially made for this bassinet. It's now in the family for a third generation!

Aunt Ninnie had preemie clothes made for David. Here is my fave.

Hat Station

Prayer Flag Station, (and Cindy P. providing laughs)

Jenny B. writing her well-wishes

GG and GG

David's library Before the shower

David's library After the shower

David’s on CPAP now, which means he’s breathing without the help of a ventilator, but still with the assistance of oxygen. This evening we will hear results from his most recent electrocardiogram. The doctor wanted to check for a potential SVT (Supraventricular Tachycardia). He had an episode a few nights ago when his heart rate jumped into and stayed in the 200s for almost ten minutes. They want to rule out any potential issues, but it’s more likely that he was just agitated and too warm.

He is a bear, you know.

As always, we’ll hope for the best.

J & G & D

Finding the Middle Ground

I’m not afraid to admit that I’m thinking in stranger ways than normal. For example, every time I have taken the elevator at the hospital over the past five weeks I have restrained myself from pressing the “door close” button. This might not seem like such a strange thing, but more often than not, in a regular non-David-related elevator ride, I press the floor number and then the “door close” button to speed up the process by a few seconds, if no one else needs to get on. The strange part about this whole little anecdote is that I somehow think that pressing the close button (which feels like a negative act) will affect David’s progress in a negative way. Like if I “close doors” in one way, it will reverberate in other ways. And so my mind has now attached two completely unrelated events to make me feel that, by controlling one silly, trivial event I therefore somehow have a little more control over the much more major and uncontrollable event.

You could say that that’s just the nature of superstitious thinking, and I agree. It is. But I still think of myself as a little extra strange for doing this, especially as I stand there alone in the elevator, resisting the urge to press “door close” and to get to David a few seconds sooner.

David has had some wonderful days since I last posted. He was extubated on Wednesday and placed on NIPPV, which stands for Nasal Intermittent Positive Pressure Ventilation. Prongs up his nose now replace the tube down his throat. Although there is much less of his face for us to look at, since it’s covered by a hat that holds the tubes in place and a chin strap to keep his mouth closed, he looks so much more comfortable. And he has a voice again! Imagine the sound of a hoarse kitten. That was the sound of David’s voice after they removed the four-week-old tube from his throat.

Here is a picture of David placed in a swaddle straight jacket after his most recent temper tantrum. He’s been throwing them a lot lately. On Saturday morning it took three nusrses to replace the prongs that had fallen out of his nose, because he was flailing and tearing at tubes and batting away his nurse’s hands. So with the force of three they were able to pin him down, one nurse holding his left arm, a second holding his right arm, while the third replaced his prongs. He’s fed up with all the mess on his face and they refer to him now as “the Bear.”  But feisty also means healthy, so I say, “Bear On, David.”

We’re all finding the middle ground right now. David’s not swinging with his oxygen needs as much, and he’s finding comfort in breathing a little more steadily on his own. Graham and I stopped swinging some too. Emotionally, that is. We’re ICN five-weekers now, and experience is helping us grow calmer by the day.

David’s plans for the week: breathing and sucking. He’s in training with a pacifier. As soon as he gets the hang of suck/swallow/breathe, he can start breastfeeding. But as it goes, it’s one small physiological step at a time.

J & G & D