Homebound

In the hospital in Virginia yesterday my older sister did the unfortunate duty of telling my Dad, now that he’s feeling a little stronger, that he’s been diagnosed with terminal bone cancer. She said it was the saddest two hours of her life. She told me how my Dad had a hard time digesting it, as anyone would, because it’s not something anyone wants to hear, at any point in life. She also said that, although he was taking it hard, he talked to her only about happy things, simple things—spending time in Vermont, his dogs, his kids—and how this impulse to talk so openly about the things he loves in life and the things he is proud of, actually made the talk that much sadder.

And all this sad talk with my sister made me hang up the phone and think about sadness. I don’t think about it in a negative way. I think about it as something as necessary as oxygen, and how, without it, we might never really live. I’m not trying to be profound, just honest. Over the last 82 days I have felt different degrees of sadness, but because of those feelings, and how they inevitably make me more reflective, my experience of raising a son for the first two and half months of his life in a hospital has been richer.

David had a barium swallow yesterday to test his esophagus, and to try to identify the unexplainable thing the cardiologist found behind his heart. It came back normal. So they did another ultrasound to look again, and they found nothing. What they saw the other day was in fact just something fleeting, perhaps a little reflux at the time of the image, but nothing to fret over. The cardiologist used the best acronym for it yet. He said that what they found was just a little VOMIT (victim of medical imaging technology). I had hoped they would find what my friend Siri thought they might find: that David had an extra heart valve for love.

So with that potential hold-up all cleared, we’re headed home today with a healthy 6 and ½ pounder! It’s been 82 trying and tiring and hopeful days but he’s finally coming home. The way we think about it is that he’s coming home 11 days earlier than his original due date. If I had carried him to term, we would be ecstatic with joy to bring David home from the hospital today. However, our feelings are now more mixed than that. But not more mixed like more confused, more mixed like more full-flavored. When we walked out of the hospital last night to get one final good night sleep at home, Graham and I barely spoke. We both felt a strange nostalgia, like something was coming to an end, but that we should be happy it’s coming to an end and that we should have been skipping down the hallways. We are happy to bring David home, of course; we’re also nervous, as anyone would be. David will be hooked up to oxygen through the winter and perhaps longer, depending on how he continues to recover from his lung disease. We learned how to use all of our home equipment, and we have our own little monitor to bring home that beeps when his oxygen saturation drops too low. So we’ll now spend sleepless nights waking up to either a crying baby or a monitor that sounds like the worst alarm clock you could imagine, set on the loudest setting you could imagine, and we can’t turn it down, and we don’t want to turn it down; we need to hear it for obvious reasons—to make sure David keeps breathing.

Graham and I barely spoke as we walked out of the hospital last night because going to the ICN has become so much a part of our routine, and we realized suddenly that we’ve built a small attachment to it—to the community of people we now know there, and the daily interactions we’ve had. We’ll miss those interactions. It has also made us re-realize how lucky we are to have so much support, because our supporters have driven our positive attitude. Not everyone with a child in the ICN has that same support, and we’ve seen how much harder the whole preemie process can actually be, and we never wish it for anyone.

This is David during his first few days. This is scary to any new mother.

This is David now.

Around 6am yesterday morning I sat nursing David in a rocking chair next to his crib in the nursery and I thought to myself how far we’ve come. It has been these recent early morning feeds that I’ve come to look forward to the most, with the lights turned down low, the other babies all sleeping in their cribs and the night shift nurses, tired and ready for shift change, all off typing their shift notes quietly at their computers. I have found that this is the time when David feeds best, because he’s the most coordinated and calm and so am I. It’s so quiet. The first time I held David, back at the very end of October, on the tile side, where all the lights stay on and the monitors never stop beeping, the nurse told me that he would be able to feel my mood, whether I was calm or anxious, and he would respond to it, so it was best for me to try to stay calm. I couldn’t stay calm then. I was so scared because he felt so small and fragile and I always thought deep down that he was going to die. But I sat there yesterday morning and I held him close and I thought how far he’s come and how far I have come—to be so calm and content and cozy, to just be sitting there together, alone, with the curtains drawn around us and no need for any help.

I once told you that the support you’ve given us has come to us like steady and stable breaths on a ventilator. Without it we would never have been able to see this experience for what it has been: a chance to look a little closer at things, to look at things for what they are and to appreciate that.

With David coming home today, I have to say that this is the end of my blogging. David’s like a real newborn now, so from now on my blogging would just be about us and our son at our home, and that would be boring. I have included some final photos as a slideshow. They show David in all the stages he went through, from 26 weeks and 6 days to 38 weeks and 3 days old.

I don’t think David will remember any of this time, and all of the intensive and sometimes painful care he received. His body might remember it, and he may never wake up to an alarm on time (that will be his excuse as a teenager), but we will certainly remember it, and we want to remember it, for all that it was, the good and the bad, because it has certainly shaped us as a family, and although I wish we could have had a normal pregnancy, sometimes it takes a little sadness to really keep us awake.

Thank you, all. I’ll miss writing this blog. Graham and I are headed home to spend some snuggle time with our son. That’s what he, and we, need most.

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J & G & D

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Just a Flash

Graham and I spent the night in the hospital last night in a room called the Koala Suite. It’s located right next to the ICN and it’s used for “rooming in,” which many parents do one or two days before going home. With a monitor inside the room that hooks into the central monitoring system, parents can practice taking care of their baby while still having the watchful supervision of the nurses from somewhat afar.

We didn’t room in with David. Not last night anyway, but that day is quickly approaching. I’m now breastfeeding David on a real mom, round-the-clock schedule, so we were given use of the room to have a place to sleep between feedings. He’s primarily nursing now, and taking only two tube feedings per 24-hour period to help supplement him with calcium and other growth goodies that preemies especially need.

David's an ounce away from 6lbs, so we can hardly call him preemie anymore.

Long long ago when David used to live on the critical care side of the ICN, they told us that once we caught even just a glimpse of the end, it would suddenly come in a flash. Just like that. After today’s doctor rounds we realized we’re in the midst of that flash. If David keeps on the trend he’s on, they told us he’ll be nestled in his own bed at home by the beginning of next week.

But as it goes, I had just finished typing that last happy homebound sentence and posting that blissful picture above when the doctor walked in and asked to talk with me. David just had a final discharge echo about an hour ago to check the status of his PDA. It’s now very very small, which is good news. However, the doctor wanted to let me know that in the results of the echo they found something else, something unexpected, right behind David’s heart. They can’t identify it because it’s not something that they routinely see. It could just be a lymph node or a herniation in his stomach, or just something fleeting that has mysteriously shown up to stretch us to our very limits. I like to think it’s that: something benign and fleeting, and that as unexpectedly as it has appeared it will suddenly fade away.

We won’t let news like this get us down, not when we don’t know what this news means. That’s a waste of energy. And we’ve learned from David that it’s not worth wasting energy when you have only a little energy to waste.

This is how David likes to spend his energy.

Many of you have asked about my dad. He’s still in the ICU, still weak and quite sick, but he IS on the mend. He was extubated on Tuesday, after my sister told him David was beating him in the oxygen weaning race, and he’s slowly getting his voice back. My aunt and uncle and cousin have come over from England to be with him this week and my sisters are still there too. My brother drove back to Virginia from South Carolina today, so he has all the support he can get. And as an entire family we continue to spend eventful day after day in the hospital. But at the fast approaching end of all of this I know I’ll finally be telling you the boring news, that my dad and David are both happy and healthy and home.

J & G & D

Looking In On: Part 3

Dear Faithful Readers,

I have not been keeping this blog in hopes of gaining readership or to get the most “site visits” possible. I have simply been keeping it to help all of you stay informed, and to help myself in the process. My writing to you has been so very therapeutic. I thank you again for visiting this blog enough to keep me writing. I say this now because I noticed today that we’ve had almost 12,000 visits since I started writing. (Half of those visits have probably been from my Aunt Ninnie), but for the rest, it’s nice to know so many people care enough to check in so often.

David is shaping into a real boy these days. He’s losing some of his preemie look and his distinctive features are starting to show through. He’s also growing quickly. He’s growing so quickly, in fact, that they’ve had to put him on a diet. At first they restricted his caloric intake and now they’re giving him a diuretic every other day for at least the next few days. He has recently been retaining fluids, and although the doctors tried to hold off from giving him a diuretic as long as possible, they finally decided that it’s probably best for him. The major downside to the diuretic is David’s potential nutritional loss of things like sodium and potassium. To counterbalance this the nurses now supplement him with a little extra “S & P” in his feedings; they season him with a little extra salt and pepper, as they call it.

He is still on high-flow oxygen at 2 litres. Just so you’re aware of where he is and where he still has to go, David started out on 3 litres of high-flow. The docs weaned him last week to 2.5 litres, and then weaned him again a few days ago to 2 litres. He needs to get to 1 litre before he can be switched to low-flow. If all the other criteria I told you about have been met, David can go home on low-flow, although we would probably rather wait until he is completely free of any supplemental oxygen needs before we take him home.

What I’m saying that I can’t believe I’m saying is that the end is in sight. We can finally start to think of it, and that’s nice.

Dreaming of home.

David is doing so well at this point that I ask you to shift your positive thoughts for a moment over to my father. He came to Vermont from Virginia last week to meet David for the first time. Unfortunately he became sick with a fever and a cold as soon as he got here and spent four days trying to recover at our house. He and my mom returned home to Virginia on Friday morning and on Monday morning he was hospitalized with severe bacterial pneumonia. On Monday afternoon the doctor told my mom it was so severe in fact that he might not survive it. My sisters got the first flight home from California, my brother and his wife and their newly-born daughter drove up from Charleston, SC and first thing on Tuesday morning Graham put air in my tires, I packed a small bag and my pumping gear and I made the ten-hour drive home, stopping twice in hotel parking lots to pump from inside my car and calling Graham to ask about David and calling my sisters and my mother to ask about my dad.

I’m not telling you this for sympathy, or to make this whole “story” more dramatic, but simply to tell you the fact of it: that it could not have seemed more unreal, that seeing my dad lying there, sedated and ventilated on that hospital bed, and the deja vu of it all could not have felt more like just a bad dream. Because that’s what it does feel like, or maybe that’s what I’m making it feel like: “unreal,” until he gets better, at least, which is happening, slowly.

I visited my dad in the ICU as soon as I arrived on Tuesday night. He’s hooked up to the same machine that David was hooked up to, so I could read the monitors, which is the first thing I did. And I kept doing it. I kept looking at the monitors and watching the breathing line on the screen, and I watched it stream across until I reminded myself of something, that I wasn’t there to look at the same monitors I’ve been looking at for almost three months. I drove 700 miles to see my dad. I went there to look in on him, and to let him feel that I, and the rest of his family, was there.

Out of respect for my siblings, my mom and my dad’s family all the way over in England I don’t need to give any details, like the details I give for David. I don’t need to talk about what he looked like and what the potential diagnosis could be. That’s too personal for more people than just me right now, and too sensitive.

After our visit on Tuesday night we all went home to my parents’ house and enjoyed a bonus evening together. On Wednesday morning I went to visit my dad once more. I left my dad’s bedside at 9:30am and made it the 700 miles back to David’s bedside by 9pm, just in time for his feeding. David never even knew I was gone.

And so with that, I ask for more good thoughts for David, and for my dad. We don’t even need good thoughts. Maybe just take a deep deep breath, and focus on it, and think of how good it feels.

Breathing feels pretty good.

J & G & D

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