we received a special request to make some chicken soup for someone going through a rough patch. happy to oblige, of course, though i did warn her that our super delicious soup starts with broth made with chicken feet. i think she thought i was joking.
no joke – beautiful broth begins with chicken feet!
and, no, these feet do not belong to any of The Girls. we get bags of feet from our local, amish source for organic meat birds.
since i have absolutely no free time, i’m going to try something new and only put a placeholder entry here. perhaps i’ll get a chance to put a more detailed account here later. or perhaps not. but for now, i’m just going to give the bullet points there are more important things to attend to.
i apologize to everyone who called yesterday who didn’t get a call back. obviously, cell phone time is short and i’m basically in “triage” mode and only returning emergency calls. after a whole bunch of voicemails it became apparent that there was some confusion about eric’s eye surgery. he was being transferred today ( monday ) and will have an assessment on tuesday. if he moves from being “prethreshold” to “threshold” then he’ll need surgery within 72 hours. the quick move was made because the expectation is that he’ll move quickly into threshold land and everyone wants to be prepared for that event. we don’t know exactly when he’ll have the surgery in the event that it’s required and i won’t have that answer until later tommorrow.
as eric gets close to transfer, the nurses get the proper paperwork in order. amidst the release forms i discovered an identification form that has his footprints that were inked on his first night in the nicu.
they sure were small. about as small as nickel.
eric made great leaps and bounds while staying in “bed 4” in the nicu, which seemed like a perfect number since he’s eric “the fourth” born on the fourth of july.
we would later discover that he would be sitting in bed 4 at the new nicu, which makes us think that “4” just might be his lucky number.
according to the rules that one must follow when tranferring a baby from one nicu to another, the nurses must corroborate that he is, in fact, who they think he is and read match the identification number on his nicu ID bracelet with the number on the transfer papers.
i’m foiling their best efforts to match the ID numbers by telling jokes and they’re laughing heartily.
nurse nancy is superfantastic and she spent much of the day trying, unsuccessfully i might add, not to cry. eventually i was able to capture her with her “happy face” on.
nurse nancy was eric’s nurse for many of his “big steps” including being transferred to the isolette and the open, unheated bed and his first bottle feeding, so she’s very, very attached to eric.
this is charles, “charlie” winslow – eric’s neonatologist. he’s the reason why eric is alive and words can’t really describe how highly we think of him.
he’s a nice guy, a great communicator and rides a bike to work.
after the transport team arrives from the new nicu they quickly put eric in the transport “crash cart”. the whole process only takes a few minutes.
his “saint mary’s” nurses are standing around looking sad and i wish there was more time to say goodbye.
little odin is resting comfortably in the crash cart, oblivious to the fact that he’s, ever so briefly, about to see the outside world for the first time.
part of the transport team from the new nicu is talking with kris and nurse cathy b. the man on the left is the ambulance driver. the woman standing next to him is a neonatal nurse practitioner who is chatting with kris and nurse cathy b.
more people from the transport team. the man on the left is a respiratory specialist and the woman on the right is a registered nurse.
they’re amiable and do a great job making us feel relaxed. somehow, during the quick process of getting odin prepped for tranfer i find myself talking with the respiratory specialist about digital cameras. go figure.
and they’re off!
little odin gets wheeled out of the nicu on his way to the elevator and the waiting ambulance.
we weren’t able to ride in the ambulance with odin, so we arrived shortly after he was put in his new bed.
he seems to be welcoming us with a hand wave as if to introduce us to his new surrounds.
of course it’s not long before he’s resting comfortably on mama’s chest.
in one of the many differences between the two nicus, eric gets weighed before and after nursing in an effort to more accurately determine how much milk he’s ingested. in theory, the practice should help us to make sure that he’s received enough nutrition, but the scale claims that eric has lost two grams after breastfeeding. so much for accuracy.
oh. i guess i should note that eric is gaining weight so fast that it’s almost starting to freak me out. he tipped the scales at at 4 pounds 9 ounces or about 2075 grams. that’s right – he gained 2 ounces over the last 24 hours and over 5 ounces in the past 48. while everyone is suitably impressed, it’s not good to put that much weight on that quickly, so my guess is that they might reduce the amount of fortifier in his breastmilk soon.
eric’ new bed is stainless steel and the temperature of nicu is a lot cooler than we’re used to which help to add to a sterile, antiseptic feeling.
the new nicu is quite different from the old in many, many ways. while “saints” was small, at 15 beds, little odin’s new home is enormous, with over 100 beds. it also gets a lot of sick babies that are transferred from many different places so it has a much different feel. it’s odd to be thrust into the new environment, trying to adjust quickly to the new rules, while walking around and seeing so many babies with shaved heads and drainage bags, presumably alleviating pressure after brain surgery. the nicu is cooler, literally and figuratively and is much more antiseptically clinical. in a weird way, it also feels like we’ve transferred from the ‘jewel in the rough’, small, personal liberal arts school to the large, top tier, big 10 school. the veneer looks more impressive, but it also seems like it could be quite easy to get lost in the shuffle. time will tell.
uh. so, it looks like i’m incapable of writing a ‘placeholder’ entry.
despite all the changes, eric continues to chug his botttle feedings while continuing to look very relaxed.
because the new nicu is kept at a cooler temperature, it’s more important to keep a knit cap on his head and cover him in blankets.
many people have asked me about where they can send postcards. it seems that little odin’s quick transfer has revealed all the procrastinators in the crowd 🙂 for now, if you’ve sent a card that’s already in the mail, i’m sure the staff at saint mary’s will keep it until i can find time to come and pick it up ( in fact, i think they were happy to hear that i’d be back to pick up postcards which would give them an opportunity to hear about eric’s progress ). i don’t know the new nicu’s policy , so i can’t say whether or not people will be able to send stuff there ( i’ll find out more today or tommorrow ). i’m not ready to post my home address on the internet ( i’m not really sure why, since it’s quite easy to sleuth it on the the internet. ), but i’ll probably come up with a solution sooner rather than later. as always, thanks so much to everyone who has sent us or plans to send us a card ( or more! ).
the endless kindness of strangers ( and friends and family, of course ) never ceases to amaze me.
more of the same today, by which i mean gagging on the vent endotracheal tube. hopefully he won’t have to put up with it much longer, although the staff is being a little cagey about when they might take him off. the party line is that it might be tommorrow, or maybe the day after that. so it’s time for another exciting round of The Waiting Game. of course, there’s not much to do in this round because being on the vent means he doesn’t have many alarms since the vent is doing all the work, and there’s no holding or kangaroo care to be had. apparently some nicus allow some ‘roo time while babies are on the vent, but ours isn’t one of them, because of the risks involved of moving an such a little thing around while being intubated. watching him as he tries to launch the tube out of his throat, i can see how they might come to that conclusion. eric is still gaining weight despite being only on intravenous fluids; tonight he weighed in at 1040 grams or 2 pounds 4.7 ounces, although it’s tough to know how much of that is “fake” weight due to the transfusions and water retension.
they are taking a lot of blood out of eric to track his progress on fighting his infection, which means lots of blooding of his blood and pricking of his foot to get blood to test his sugar levels.
in one of those small pieces, loosely joined moments, i was reading susan dennis’ post on how she had become so enthralled with following eric’s progress ( or lack thereof, as the case may be ), while also reading An Innocent, a Broad by ann leary, who happens to be dennis leary’s wife. as soon as i learned that the book is her account of having an micropreemie while on a business trip in london, i knew that i had to run out and immediately get the book to help me pass time while playing The Waiting Game. jeez louis. we managed to get to page 11 before kris and i broke into hysterical fits of laughter complete with tears rolling down our faces, as ann and dennis try to come to grips with the fact that she’s just has a premature rupture of membrane ( PROM or, simply, her water broke too early ).
“It’s true that at times like this we learn of what we’re really made. I used to think that if I were in a major disaster – say a plane crash or an earthquake – I would be the one to take charge. While the weak-willed people with the small brains ran shrieking into the burning wreckage, I would be the one to stop them and lead them to safety. In my mind most people were handwringers, unable to take action, while I was a doer, the who could coolly Heimlich the choker and tourniquet the bleeder. It was easy to hold these beliefs about myself, as I had never actually been involved in any kind of real-life crisis. I identified with the heroes and heroines in literature and felt sure that I would have been able, for example, to deliver Melanie’s baby in Gone With the Wind or rebuild a plantation with nothing but my bare hands and razor-sharp intellect. It never occured to me that nobody sees herself as Prissie the useless slave girl, and that it’s easy to feel brave when the most immeninent threat is an overdue cable bill. So it came as a bit of a surprise that afternoon in central London to learn that I am, in fact, the shrieking, running-into-the-burning-wreckage type.
“Maybe you just peed your pants, “Dennis offered hopefully, between my wailing cries.””
it’s hard to remember exactly how i held up on the day that this all began. i think i started off as more of the calm, cool and collected type than even i thought i was capable of, but slowly as the day wore on, i’m fairly certain i transmorgified into the shrieking, running-into-the-burning-wreckage type. luckily, at that point we were already surrounded by a cadre of trained professionals and not standing on the corner with nobody to turn to but dennis leary 🙂
eric spent the day stabilizing. as quickly as things started falling apart, they appear to be coming back together, thanks to the fast response of his care team. he’s still on the vent, but amazingly, he’s doing so well that they they’re just letting him cruise to give him a rest while he fully recovers from the infection. his differential blood counts are all returning to normal and there’s still no sign of bowel perforation. we’ll never know what caused his skin to start to slough off. nurse debbie said it might not have even been an infection at all, but rather a circulatory issue. micropreemie skin is so delicate that small changes in circulation can cause the skin to deteriorate.
there’s certainly no doubt that eric’s gag reflex is developing quite well, as he spent much of his waking time choking on his endotracheal and od tube which releases air from his stomach. although he was relatively comfortable, it was still quite difficult to sit by his bedside and watch him gag on his tubes over and over again. they could have taken him off his vent today because he doesn’t appear to need its help for breathing, but they want to let him get a little more rest while he’s recovering from his infection. from where we’re sitting it’s hard to see how he’s able to rest while he’s gagging, but i guess that’s the way it goes.
he got another 10 cc’s of blood. they are taking a lot out of him since they are running a bunch of bloodwork to monitor his infection. whatever they take out, they have to put back in.
whenever they give him a transfusion, they monitor his blood pressure closely. the white cuff on his right leg is pressurized, which is making his foot red. eric doesn’t like this one bit. if you look close you can see that he’s squeezing his fist and pushing it against his thigh, while sucking a bunch of air in his belly and kicking up his left leg.
no, he’s not happy at all. soon it’s all over.
he’s wriggling his foot as if he’s trying to kick off his cuff.
so, other than a little gagging and a transfusion or two, it was a fairly quiet day. i suspect in the next day or two, eric will be back on the cpap and start feeding again. maybe we’ll even get to start kangaroo care.
today, we also had to deal with an issue that any nicu parent faces – comparing your child to those around you. it’s one of those things that you know you can’t do, but which is basically impossible not to do. in our case, one of the new admits across the way happens to be a 27 weeker who came in at 1 pound 9 ounces.
he’s aready on nasal cannula full time and graduated from a radiant warming bed to an “isolette”, which means that the don’t think that he’ll require as much intensive care as eric still requires.
while we’re tremendously happy for the 27 weeker parents, it’s hard not to feel jealous at how much difference two weeks can make, as we watch eric gag on his ET tube.
three hours. that’s how quickly things can go to hell in a handbasket. we left at 11 p.m. last night, as confident as ever that we had escaped any problems which seemed to be lurking in the background all week long; by 2 a.m. several of eric’s systems were failing all at once and by 4 a.m. there was serious concern that he might have a perforated bowel and they were getting ready to transport him to the other nicu in town for emergency surgery. at the time, apparently the only thing that kept eric from being transported was the fact that the surgeons said that they wouldn’t do the surgery on him because he was too small to survive.
the following twelve hours were filled with as many, if not more, emotional ups-and-downs than the night eric was born. as the complications were delineated it became apparent that he had not one, not two but three calamitous events occurring, two of which were characterized as rare. the most acutely dangerous event was known as a strangulated hernia ( ironically, the determination that he did, in fact, have a hernia was considered so uneventful that i decided not to post such boring news right away ), which happens when fecal matter gets pushed into the herniated bowel and can quickly lead to a perforation. and the last thing you want with a micropreemie is a hole in the intestine, leaking fecal matter and air throughout the abdomen. it’s quite uncommon to see a strangled hernia in a micropreemie; only one of the nurses could remember an occurrence, 7 years ago, and couldn’t remember having seen any prior incidences. somehow the neonatologist was able to unstrangulate his hernia by holding him upside down and pushing and poking at the hernia. in a very understated way, the neonatologist would later allude to just how lucky we were that her improvised unstrangulation technique worked, as i’m not sure what would have been done since it was already determined that they weren’t going to perform surgery on him on account of him smallness.
why was fecal matter being so forcefully pushed through his hernia? because it didn’t have any place to go as his bowels were shutting down and everything was stopped from moving along normally. in addition to creating a strangulated hernia, his backed up bowels quickly began pushing on his lungs, which stopped his breathing and necessitated eric being put back on the vent. and why were his bowels shutting down? a quick blood panel indicated that he was quickly getting an infection ( as evidenced by an increase in immature neutrophil cells or bands ), and his body began shunting blood away from his bowels and towards other areas in preparation for a battle royal. routing blood away from the intestines is likely a good strategy most of the time, as who has time for eating when you’ve got a bad infection, right? unfortunately when you’ve got 7 cc’s an hour of breastmilk coming in and blood moving out, you’re actually creating the best possible conditions for necrotizing enterocolitis.
as if a strangulated hernia, backed up bowels and a worsening general infection weren’t enough to make for an exciting night, the nurses discovered that while they were trying to unstrangulate his hernia, his skin was sloughing off. yes, you read that word right, his skin was falling away. disintergrating. and creating a festering mess. for a little thought experiment, try to imagine having to absorb the word sloughing at 4 in the morning. at the time the disintegrating skin was perhaps the scariest news, because nobody had seen anything like it. nobody. in the morning nurse jan confessed that she hadn’t seen it in 22 years of working in the nicu. even the infectious disease specialist hadn’t seen anything like it.
oh, how we were wishing for good old days, when the worst we had to worry about was whether or not he’d be put back on the vent.
so the day was spent trying to come to grips with how quickly and how completely everything had fallen apart, as we tried to stay focused on how his clinical pictures was changing from moment to moment. an antibiotic regime was started to help fight the general infection and they decided to treat the mystery topical infection with pretty much everything they had as they were lacking any any definitive specific lab results ( no trace of yeast in the infection and no bugs are caught growing; the lack of any yeast was described and bizarre, since you’d expect to see some and as we learned in the past, it’s not that surprising to not catch the bugs ), they decide to treat it as if could be anything, which i guess is just about the only thing you can do. as the day wore on, his blood counts began to slowly return to normal and by the evening almost all evidence of the skin sloughing had disappeared.
it’s hard to describe the feeling that you’re left with as you realize that the wreckers of such rare havoc are going to fade away without you ever knowing their names.
it took quite some time for the neonatologist to rule out a bowel performation, as the regular x-rays kept showing large amounts of air in his bowels and it was difficult to know if the air was inside or outside the intestine; a specialized x-ray machine was hauled in which could more easily allow them to determine if the air was moving as he changed positions, which would mean that it was floating around his abdominal cavity.
as luck would have it while the film was being processed, there were two more admits to the nicu, which meant that we had to sit around, wondering when they’d get a free second to review the results and release us from the purgatory of not knowing if he had a perforation. eventually, the neonatologist rushed in and exclaimed that everything looked great and that we were out of immediate danger for now.
it’s funny how quickly you can reset your personal expectations as to what constitutes good news. before we left for the night we watched eric resting comfortably on the vent, feeling a sense of relief to see him so peaceful while pondering the irony that today’s good news would have been yesterday’s catastrophe.
many, many thanks to all of eric’s wonderful caregivers whose attentive observations and quick, accurate actions helped to avert what surely could have been a disaster. i’ve said it many times already, but i have no idea how you do what you do.
here’s to hoping that i can continue with weeks and weeks of posts that are as boring as this one. nothing much extraordinary happened. well, nothing much beyond a relaxing day filled with five hours of kangaroo care with kris, a diaper change from yours truly ( the second one! kris is not exactly quick draw mcgraw with the camera so we don’t get to see any pictures of me changing him. sniff. ), a bit of eye contact now and then and some quality reading time. of course, he still likes throwing out the occasional “a’s” and “b’s” ( nicu lingo for apneas and bradycardias ), but none of them were long enough to make him turn gray or blue, so that’s progress.
i don’t know how he does it, but he seems to spend a lot time trying to impress upon you just how comfortable he is despite it all. trust me. you know when he’s not comfortable. like when he gets done with kangaroo care. then he turns into a writhing mass of clenched fists and thrusting feet while emitting little squeaks.
i like how he tends to open his eyes when i come to his beside to visit. his eyesight is probably no better than 20/600 so it’s best to stand 6-10 inches away. he’s getting better at staying focused on the center of your face when you talk, but he also tends to let his eyes wander around the periphery of your face, which is fairly “normal”. i think in about 3 weeks he’s going to have a set of tests from an eye specialist who is going to be looking for signs of a common problem in micropreemies known as retinopathy of prematurity, which is caused by abnormal blood vessels in the eyes. as with most conditions, there are many different stages and manifestations and variable degrees of success from a cadre of treatment options.
it’s my understanding that he’s at a decreased risk for ROP because his “oooohs” ( nicu lingo for the percentage of oxygen that is added to the air going through his CPAP mask ) have always remained remarkably low. in other words, the staff doesn’t have to add much oxygen for him to have and adequate supply in his blood. while oxygen is obviously important, too much of a good thing can cause abnormal blood vessel growth.
but one must always remember that decreased risk does not mean no risk; for now, it’s impossible to know if he has any manifestation of ROP, so it’s strange to look at his beautiful eyes and wonder if there are problems lurking ahead. it’s just one more thing that you try to prepare yourself for, while still attempting to enjoy the moments you do get to look into his eyes.
in addition to some reading about pooh, eric very much enjoys being read “call of the wild”. for some reason he identifies with buck, a courageous dog, who is ripped from his cushy surroundings and forced into a life-and-death struggle in the alaskan wilderness where he must learn how to use his wits to survive.
after all the heaviness inherent in buck and his amazing adventures, eric finds the time to enjoy a light game of ‘footsie’. well. o.k. it’s not really footsie, but it’s the best we can muster at the moment.
notice that piglet really, really wants to play along too.
