Tuesday, December 30, 2008
Monday, December 29, 2008
Monday, December 22, 2008
Last Wednesday, Becca had an appointment at the ENT clinic at Vandy. John was in the process of coming down with strep throat, so we left him in Bethpage to visit the Hope Clinic. Becca and I went in early that day andhad an early lunch with a few of Becca's primary nurses. It was great to see Stacy, Leigh, and Carla, and they were amazed at how big Becca had gotten. Stacy was wearing a really fuzzy sweater that Becca loved. She kept nuzzling into it to feel it on her face, which was pretty adorable. We met them at Panera and found a quiet little alcove that I think remained fairly germ-free until the lunch rush started coming in (and we headed out). Becca LOVED being in new surroundings and was fascinated by a whole new set of lights, colors, movement, etc. This girl's going to like the big, wide world come summer!
We headed over to the hosptial (after collecting the ADORABLE cups that Stacy made for my nieces and nephews for Christmas - if you are looking for monogrammed and/or embroidered treats for little ones, be sure to check out her website by clicking here) and got to the clinic just in time for her appointment. Becca, who had been calm all day, decided to melt down and test out her lungs in the office, which made for a really good time for everyone. First we saw Mary, the wonderful pediatric audiologist, who repeated the test of her eardrums, which were still not moving. Then we saw an ENTdoc whose name I am withholding because I was not particularly pleased with him. He tried to touch my baby without washing his hands. And then he acted like I was crazy when I asked him to do so. Andthis was after he nonchalantly asked if there was "anything abnormal about her delivery or birth?" Um, yes. Please read her chart. I actually just laughed at him when he said that. Anyhow, I was glad to let him think that I was a crazy germ freak if that got him to wash his hands before touching Becca. Seriously? The smallest baby ever to survive at Vandy? The baby who cost $667,000 plus doctors' fees? The baby I'm not allowed to take out in public for 6 months? Yes, I think you can manage to wash your hands. Ugh. Anyhow, after he did wash his hands, he looked at her ears andaffirmed our hunch that she does, indeed, need tubes in her ears. He will be the one to place them, but he doesn't do surgeries on Mondays, which her hernia surgery was scheduled for, so we are postponing the hernia repair to a time that both he and Dr. Morgan are available so that we only have to put her under once. After the surgeries are completed (but while she is still sedated), Mary will repeat the ABR (the extended hearing test we did several weeks ago) to make sure that the tubes do fix the problem. If not, we'll have to investigate more, but she seems pretty confident that the tubes will clear everything up. All in all, then, it was a good visit, even if I did have to ruffle a few doctor feathers. (His resident, by the way, was in the room for that exchange, and I think he was pretty entertained by it.)
After leaving the ENT clinic, we visited around a bit, seeing a few of our nurse practitioners, some of the MR's who knew us, and Dr. John, Becca's first fellow. (That's funny. He wasn't, like, her first date. He was the neonatalogy fellow in Stahlman for the first month of her life.) We made a round through Green Hills, stopping at Calvary, where we saw Libby, Jule, and Peter (who, I found out, was a preemie himself - he's now, what, 6' 6"?), and then by Carol's house, where I got to introduce Becca to Tate and Martha. I didn't take her out of the car in either place (you know, germs and all), but I showed her off through the car window. It was a bit like looking at a small animal at the zoo. A travelling human baby zoo, that is. After a visit with Jeannie at her office at 2nd Pres., Becca and I began the trek back north to the hinterlands.
It took a little longer than expected.
Four days after Becca was born, her crib was recalled. (Even though she was 3 months early, we already had a crib, thanks to our friends, the Satterlys, in Louisville and Elizabeth Satterly'swillingness to move into a big girl bed.) With other things on our minds, of course, we didn't realize this until a few weeks ago, so we've been in the process of getting it replaced. The crib we had purchased had arrived at Babies 'R Us, which is right on the way home from Vandy and at least 30 minutes from our house, so I really wanted to stop and pick it up. I called ahead and had them bring it out to the car for us and everything so that Becca wouldn't have to go into the germy store, which they were more than willing to do. (Turns out one of the managers also had a baby in the NICU at one time, so she understood.) I pulled up, called them to let them know we were there, turned off the car, cleared out the back, and closed the door so that it would stay warm for Becca while we waited.
Apparently my doors lock automatically when you close the back (it's a wagon). I was outside the car. The keys were still in the ignition, though it wasn't running. Becca was inside the car. It was 37 degrees outside. And this is why I am The World's Greatest Mom.
Becca is a miracle baby. She overcame tremendous odds, dire predictions, and every obstacle thrown her way. She lasted longer than they thought she would in my crappy womb. She survived delivery. She quickly learned to breathe on her own. She didn't have any brain bleeds. She is developing normally. She cost our insurance and the State of Tennessee very nearly $1,000,000. And I locked her in the car, without the heat on, in nearly freezing temperatures.
This is not the first time I've locked my keys in the car, but it is the first time I've locked a child in the car. I did lock Tate and me out of the car together once, but it was summer, and all was well. Turns out there are a few benefits to having a child in the car when you lock your keys in it. It's declared an emergency, and the cops come, sirens blaring. Someone from the store stays with you to make sure you don't freak out. And the locksmith doesn't actually charge you. At least there is an upside to it.
Long story short, one hour, two cops, two managers, one shopper who used to be a locksmith (or a car thief, not quite sure which one), and one bona fide locksmithlater, I was back in the car with sweet Becca, who was still warm, and, while irritable (after all, she was stuck in her carseat, her hat was in her eyes - which she HATES, and she had dropped her paci), she didn't seem to notice that life was any different than it was on the hour-long drive to Vandy. Just for the record, Ford Focus wagons are really hard to break into (thank goodness, because I know otherwise everyone would be clamoring to steal my mom-mobile), the folks at Babies 'R Us (in Rivergate) were WONDERFUL, and the cops successed in getting into my car before the professional locksmith (a feat of which they were very proud). And then the crib didn't even fit in my car. Sheesh.
So somebody send me my medal or little gold statue or something, because, gosh, aren't I who you want raising this miracle child? Thankfully, though, Becca is too young to remember it, so she won't have to mention it to her therapist later. Being a double preachers' kid, though, I'm sure she'll come up with more to talk about. ;) Oh well. All's well that ends well, I guess.
After a day of cozy hibernation in the house (with TWG Mom still flying solo as John was still technically contagious, though it's difficult for babies to catch strep), Becca and I trooped again on Friday for her 6-month well baby visit to the pediatrician.
That's right: BECCA IS 6 MONTHS OLD! Yesterday was her very first half-birthday. Can you believe it? That also means we've lived and worked in Bethpage for half a year, which is even more crazy. No, it's more crazy that Becca is 6 months old. WOW!
Since Responsible Daddy John was with us, this trip was logistically less eventful, although poor Becca had to get 5 shots (4 regular 6-month vaccines and her monthly Synagis RSV shot). She was NOT happy, though she recovered pretty quickly. Dr. Collins was happy with her growth and progress anddoesn't need to see her back until her regular 9-month well baby visit. (A nurse from Vandy home health is going to come to the house to give Becca her monthly shots and weigh her so that we can keep her out of the germy, germy, germy pediatrician's office.) She's on a regular baby schedule for her doctors' appointments, then! (Except, of course, all of her specialist visits and her upcoming surgery.) That's exciting! It feels like a graduation of sorts.
Except that we ended up back at the office the very next day. On Saturday morning, John woke me up to tell me that Becca had a fever, even though we had been giving her Tylenol after her shots. It was 101.8, which was a bit higher than I would have expected in a vaccine reaction (gee, since I'm the expert and all ;) ), and since a) we know she has fluid in her ears that could easily cause an infection; b) she was in the office the day before and thus exposed to all kinds of sick kid germs; c) the office is closed on Sunday, so if we followed the regular rules of waiting 24 hours, it would be Sunday morning, John and I would be at work, andwe'd have to go to the ER withfolks who didn't know Becca at ALL; d) Becca never had a reaction withher 2- or 4-monthshots; and e) let's face it, Becca's kind of a fragile girl, infection-wise, I insisted that the doctor see her. Mom and I took her in while John and Dad took their big car to actually pick up the crib. (My parents were in town for our Christmas and to babysit for my first Sunday morning back, but more on that later.) It was one of Dr. Collins's partners, Dr. Murray, who had not yet met our little rock star; neither had the office staff who were working that day. When I asked if there was an exam room open that I could take Becca back to, I was told there wasn't, even though there are more than a dozen rooms and only one doctor on duty who couldn't possibly have that many patients at once (at least, not given the state of the parking lot). We waited in the car for 45 minutes before I went back in and (hopefully politely) pitched a mini-fit and they opened ONE OF THE 9 ROOMS THAT WERE AVAILABLE for us. Ugh. Our pediatrician's office is GREAT, once you get someone who knows Becca and her story. In the meantime, though, people just seem to think I'm a jittery first-time mom who is overreacting. ("What do you mean, she can't wait in the waiting room?" "I mean, she CAN'T wait in the waiting room. Doctors' orders.") Once we got to the nurse (who did know Becca) and Dr. Murray, everything was great, and they didn't even make me feel bad about bringing her in. Dr. Murray checked her ears and her breathing and cleared her for another 24 hours unless anything changed. I was glad that we saw him, especially in case anything did change, and we ended having to call him in the middle of the night; at least then he would have seen her once when she was just a little ill. Turns out it was just a reaction to the vaccines, which our physician assistant friend says is a really good sign because it means that her body is mounting an immune response to the vaccines. Though she ran a low-grade fever most of the day, by Sunday afternoon, she was clear. Mom, Becca, and I got home just in time to see - really, to EXPERIENCE - our first Bethpage Christmas parade.
I don't know where all these people came from, but it was HUGE! I mean, not quite Macy's huge, but bigger than I ever would have imagined. I was supposed to be in the parade with our youth, but since we literally snuck through the barricade to get back to the house minutes before the parade came by, I missed out on the fun. When we did get home, there was a party in our driveway, as the parade passes right by the parsonage. I sent John in to get a couple of blankets, wrapped the little one up in several layers, and joined the party as the parade rolled and rolled and rolled by. I'll have to get pictures to put up later, but let me just say that I have never seen so many tractors, old cars, ATV's, motocycles, horses, and MULES in one place. It was crazy, amazing, and wonderfully Bethpage. A couple from our church served as the grand marshalls, andI cried when I saw them. (Yeah, I'm a crier these days. Good thing the Olympics are over with their gut-wrenching McDonald's commercials.) It was sweet. The cub scouts rolled by, and I cried. The youth rolled by, and I cried. And then Santa rolled by, and I tried to wake Becca to show her, but she was so burrowed andcozy that there was no waking her. I thought it was very kind of Santa to come to her house to see her this year since she's not allowed to go to the mall to visit him.
And speaking of Christmas...like I said, Mom and Dad Speas were here for Christmas this weekend, but this is already the longest post EVER, so I'm going to save that story and pictures for its own post. Surely Becca's first celebration of her first Christmas is worthy of its own post. ;) As is my first Sunday back at work, possibly.
A couple of things I do want to go ahead and mention, even if it makes this post longer than some master's theses: Becca is now officially on the Tiniest Babies Registry. I had no idea anything like this was out there, and I would have loved to have come across it when Becca was still tiny or before she was born, but I'm glad to have found it now. It's just what it sounds like: a registry of the world's tiniest babies (click here). Surviving babies born under 400 grams are eligible to be on the registry, which is run by the University of Iowa Children's Hospital. I submitted Becca's info, talked to a neonatalogist there, had the info verified by Dr. Ashner at Vandy, and now's she officially baby #97. If I counted correctly, she's tied for the 66th smallest baby ever to survive in the world. Wow! It's really fascinating to look at this list and see how the babies are doing now. (There is updated healthinformation on many of them.) Three of the babies on the list were born in the 1930's! That's unbelievable (except that it's been verified, so I do believe it)! It's encouraging to know both that Becca isn't alone and that she is one of a precious few. Very fun.
Not quite as fun are the circumstances that led me to discover this list. One of my friends from high school, Adrianne, is 24 weeks pregnant with twin boys. She has gone into pre-term labor and was admitted to the University of Iowa hospital. Since I know that her boys are at a very precarious age, I was checking out her hospital online to get a sense of how their NICU is. I'm so glad to saw that it looks like they have state-of-the-art facilities and a talented faculty (like Vandy!) so I know that Adrianne and her boys are getting GREAT care. Please remember her, her twins, her older son, andher husband. I think they've been able to get the labor under control, but these little boys sure could use another few weeks before they enter the world on their own! If you'd like to follow their story, click here. Adrianne is tough, positive, and amazing, so I know those boys are in good hands (metaphorically speaking, that is). :)
If you made it to the endof this you are either a) family; b) a very good friend; or c) stuck at work just before Christmas andtrying to avoid being productive. Whatever your reason, thank you! :) I'll be back on with more Christmas pictures of Becca, including shots of her in her new Bumbo seat, which she LOVES (thanks, Aunt Jenny Speas and crew!). If I'm not back here before then, have a very, very merry Christmas, andrevel in the joy of the truly miraculous baby whose birth we celebrate. This year, I'm celebrating two miracle babies. :)
Wednesday, December 17, 2008
Upcoming: if Becca, work, and Christmas cards give me a few spare moments tomorrow, I'll let you all know why I am The Greatest Mom in the World. John has strep, so I'm flying solo with Becca tonight and tomorrow - wish me luck! It's quite the inopportune time for him to get sick (for his sake), as he preaches on Sunday, and then again on Wednesday (you know, Christmas Eve - pretty big!), has family in the next 2 weekends, and still has to work on his ordination papers, which are due just after the new year - plus all the regular church work - eek!
So now I'm going to sleep. Hopefully I can update you tomorrow, both on my "award" and on Becca's visit to Vandy today.
But now, I sleep (after I mix her milk, stuff the Christmas cards, pump, and shower, that is). Phew.
Wednesday, December 10, 2008
Tuesday, December 9, 2008
I've been known to update my status line a lot. (Kind of a flashback to the old Learnlink days...ah, Learnlink...) Some of my best friends say that I have no internal monologue; that is, my "internal" monologue is all processed externally. Hence the proliferation of status lines. However, I hold that I do have quite a bit of internal monologue; it's just that my mind doesn't stay still long enough to sort through it all without saying some of it out loud. (Um, I think that might be the definition of an extrovert with ADD.) But the point is, there is always, much to my dismay, more going on in my mind than even my jumbled ex/internal monologue - or my status lines - can hold.
All of that is to say that every night when I go to bed (finally), my mind reels with potential status lines that describe my day and/or my present state of mind. Sometimes I'm tempted to get out of bed just to update my status line - with several lines at a time. Like I said, I'm an addict. However, so far I have managed to stay in bed and sort through them all in my nest of pillows. But last night it occurred to me that all those lost status lines might make a good blog entry that would, as I said, give you a glimpse into life at home with Becca - and my crazy mind in the midst of it all. I'm sure there will be sequel entries of this sort, but to start, here are a few of the potential status lines that have drifted in - and out - of my scattered days.
Nancy had no idea that taking a shower was such a privilege.
Nancy appreciated that shower this afternoon but really thought that Becca would have more than 30 minutes of sleep left in her.
Nancy refuses to move the new glider out of the den even though it is in the middle of the floor. It's so damn comfy!
Nancy walked out to the mailbox in the rain with a broken umbrella, simply to get out of the house for the first time in 2 days, and found only junk mail at the end of the rainbow.
Nancy occasionally remembers that a) her baby survived and b) we elected Barack Obama and is overwhelmed with joy. Granted, one makes her happier than the other, but both are monumental.
Nancy takes immense joy in decorating her daughter for Christmas.
Nancy is really, really liking this whole Santa gig. Good thing Becca can't leave the house, or we'd be in major Target debt.
Nancy is quite impressed with Becca's chunky monkey thunderthighs. We've had to move her out of the newborn diapers just to accommodate them.
Nancy laughs at the "size 1" diapers that creep up darn near Becca's armpits.
Nancy, occasionally, believes that she might just be Superwoman enough to make it all happen.
Nancy is neither the mother, the wife, nor the minister she had hoped she would be.
Nancy counts down the days until she can introduce Becca to all her cousins - especially her very new cousin, Miss Lucy Kate Speas!
Nancy compulsively plans vacations for the non-RSV season. May - September, here I come!
Nancy really feels Michelle Obama on the whole work/family balance thing.
Nancy wishes the dogs would learn to tell time and not ask for dinner until AFTER 5 p.m.
Nancy is ready to get Becca started on that whole potty training thing.
Nancy is looking for a few good babysitters for Sunday mornings.
Nancy is anxious to try to the whole pregnancy thing again to see if she can get it right this time.
Nancy is not anxious for another baby.
Nancy moves from the living room to the den for a change of scenery.
Nancy finds something quite satisfying in doing laundry and mixing Becca's milk. Two of the few chores that have something to show for them at their completion.
Nancy dreads the conversation about dinner.
Nancy wishes desperately that there were a Chick-fil-a in Bethpage.
Nancy very much appreciates her husband bringing her Chick-fil-a from his big trip into Hermitage.
Nancy's dreams change as frequently as her pajama pants.
Nancy loves that she could, essentially, stay in pajamas for 6 days straight.
Nancy is proud of Becca's developmental assessment scores (more on this after we meet with our TEIS coordinator on Friday).
Nancy does not understand why the doctors want Becca to "catch up" size-wise. In 10 years, she'll be feeling the pressure to downsize. Can't we just let her be for now?
Nancy does not miss driving to the hospital, but she misses the hospital.
Nancy does not -at all - miss not living with her baby, but she misses her nurses.
Nancy eagerly awaits packages and is very, very thankful for the invention of the internet and the resulting ease of shopping and entertainment.
Nancy just heard her husband pull into the driveway. Time for the dreaded conversation about dinner!
That ought to be enough for now! :)
One more - Nancy finds it ironic that her blog's spellchecker doesn't recognize "blog" or "internet"!
Tuesday, December 2, 2008
My baby smiles at me. Hot damn, that's great! I tend to smile back.
Also in Becca news: she has developed "The Becca Noise." (Each member of our family has a noise. Perhaps someday I'll share the others.) When holding her paci in her mouth, she babbles, saying, "waggawaggawaggawaggawaggawoooooo." I like it.
I had to pack up most of the preemie clothes yesterday. There are a few things left out, several that I need her to wear one last time, but we're moving into the newborn clothes (which is good, because I never did find Christmas outfits in preemie sizes). Not quite ready for the 0-3 months, but out of the preemies. The amazing thing is that it's mostly the length that has become a problem. She's 18 inches, 6.5 pounds now - like a newborn, only 5 months older. And cuter.
Never did tell you about the endocrinologist - nice guy, not sure if her hypothyroidism will be chronic or not, adjusting her meds, and will recheck after Christmas and possibly decide to readjust, depending on her levels. Didn't learn much about the vision issues associated with septo-optic dysplasia. I'll likely call the pediatric ophthamologists and, um, politely request that they see her earlier than the spring visit she has scheduled and tell us what in the world we may be looking at (no pun intended, but I kind of like it).
Starting work again. Conflicted about this. Not sure how to do it all: full-time childcare (though with an extremely helpful husband/father) and "part-time" youth ministry. We'll see. One week at a time. Speaking of, if you want to wrap presents at the Christmas Bazaar on Saturday, e-mail me at email@example.com. You know you want to!
Really, that's all I've got. Very tired and achey. But congrats to Narcie (who is surely more tired and achey than I) and Mike on the birth of adorable Evangeline Grace! And because I love you and would like you to smile, here's the Santa Becca picture.
Wednesday, November 19, 2008
We just got back from the pediatrician, and Becca is doing great! She must have listened all those times Heather told her to "think chubby," because she's over 6 pounds now! Wow! She is 17.75 inches as well. She's now as big as a small newborn - at 5 months old! ;) I've dropped her down to the 26-calorie recipe (breastmilk + preemie formula), and she's slightly less miserable (she was really gassy before, to the point that she was crying nearly the entire time she was awake - miserable for all of us!) but still growing well. She's doing pretty well at night. Our pediatrician (Dr. JoAnn Cook Collins, who is fabulous!) has given us permission to let her (Becca, that is) sleep at night (instead of waking her every 4 hours to feed), and she's slept up to 6 hours at once. She usually still wakes up between 4.5 and 5 hours. Still, that's not too bad. And it would be downright good if wasn't an insomniac! I'm having trouble sleeping even when she is O-U-T. Except in the mornings. This morning John let me sleep until 11, which was awesome. Clearly, I'm supposed to be nocturnal. John has gone back to work, so we're trying to figure out the best way to make it all happen. I still have a couple of weeks before returning to Sunday nights with the youth and then another few weeks before resuming all my work responsibilities. Then the real juggling act will begin, since we will be doing the childcare ourselves, while working. I'm not sure how it's all going to work right now, but I don't have to know yet, I guess. I'd love to chat with some of you moms who have recently had to make the transition back into the working world. It's a little overwhelming to think about - and I'm only working part-time ("part-time" church work...riiiight...).
Aaaaaaanyway....we go back to Vandy tomorrow for two appointments. In the morning, we'll see the anesthesiologists, who just want to check her out and get to know her history a little better before her surgery in January. In the afternoon, we'll have our first visit with the endocrinologists, who will follow her the rest of her life. I mean, these particular pediatric endocrinologists won't follow her forever, but since her hypothyroidism appears to be chronic, she will have to be followed by endocrinology throughout her life. It seems to be a pretty easy condition to manage, but if it's not managed well, it can cause serious problems, so I'm excited to meet the docs tomorrow. We'll also get to talk with them some about her other chronic issue, one that I don't think I've mentioned here yet.
Just before Becca came home, we finally (after several months of suspicions) got a ?definitive? diagnosis from her MRI. Becca has what is called septo-optic dysplasia. Basically, she's missing a part of her brain, which results in a rare syndrome. It can manifest itself in 3 typical ways: in endocrine issues, in visual impairment or blindness, and/or in mental retardation or some degree of neurological impairment. She could have all three problems or just one (or two or none, but we know she's got the endocrine issues, so that's at least one). As I said, she's got chronic hypothyroidism and her pituitary gland shows some abnormalities. We're pretty confident that she has fairly high mental function, as she seems to be developmentally on track based on her corrected age (though, of course, it's really far too early to tell). Besides, just the fact that she did so well physically is an indication that her brain is in pretty good shape as it, of course, holds all the physical functions together. Right now, she's done well on her vision test, but they have been looking specifically for vascularization (because oxygen therapy can interfere with the eye development) and not for optic nerve displaysia ("displaysia," by the way, just means that something is malformed). Very early on the ophthalmologists tried to look at her optic nerves, and what they saw looked good, but it was really too early to see. She's definitely seeing now, as she is VERY into studying her environment (especially anything that moves - she LOVES the ceiling fans) and tracks toys, etc. Unfortunately, though, the blindness can develop anytime in the first 8 months (and it's not clear whether that's 8 months corrected or chronological). When I think about it, I get pretty nervous. It's just so hard to function in our society blind. So much of our functioning and independence relies on sight. But, I also know Becca and know that she's up for just about any challenge ahead of her. She's a tough cookie. I would rather spare her this particular challenge, though. She has some symptoms (her eyes shake involuntarily occasionally), but hopefully these are just remnants of her prematurity that she will grow out of. We do have a regular preemie follow-up appointment scheduled with ophthalmology early next year, but depending on what the endocrinologists think tomorrow, we may try to move that appointment up. (Apparently, your endocrine system affects, oh, everything in your body, so they are the ones to talk to about these rare conditions. Dr. Collins called them "the smartest doctors in the hospital" because they have to know about, um, everything.)
We'll let you know how things go tomorrow. In the meantime, enjoy these pictures from Becca's fancy dress photo shoot! Also - Becca finding her thumb and pics with her boyfriend Hunter Snow - who was born 2 days after Becca's due date! Wow!
Oh - Becca's blowing bubbles and smiling occasionally now. So cute. She smiles most often when sleeping and eating - that's my girl! :)
Thursday, November 6, 2008
I'll have to give a more full update later, but I wanted to jump on here really quickly and say that we are settled into a routine, getting several hours of sleep a night, and doing great! We go back to the pediatrician tomorrow, so I'll have growth stats for you then.
Becca's a fun - and stinky! - girl!
Wednesday, October 29, 2008
Alright, we've been home a week now and may be getting the hang of it. As much as we were anticipating her arrival, it's still a bit (or very, at times) overwhelming to have a newborn in the house. (Chronologically she's 4 months, but development-wise, she's 6 weeks - so that's pretty stinkin' newborn.) We had four blissful days as Nana Dana took care of the three of us, but as of Sunday, we were on our own. Here-a we go!
Generally, I think we are doing well. Generally, Becca sleeps more at night than during the day. Generally, John and I are sharing responsibilities well. Generally, the house is not yet falling apart. Occasionally, though, I feel like we're never going to get it together, that Becca hates me, that I never should have been a mother, and that I will be tired for the rest of my life. When I have a clear mind (and a few hours sleep), though, I can logically tell you that only one of these statements is true. (I'm banking on the last one.) I am choosing not to think about how we are going to make it work when we go back to work because we still have a couple of weeks with us both on leave. I figure by the time we have to add our professions back in, we'll be ready (or at least readier (which is a word, by the way, when one is running on 3 hours sleep)) by then. Though I certainly would not have chosen this route, I do appreciate the fact that I am no longer recovering from major surgery as I adjust to having a newborn around.
Since I am in the habit of putting it all out there (I know, that's putting it lightly with some of you), I'll go ahead and note that as someone with a history of depression who has just gone through major life transition (in addition to the whole baby in the NICU thing) and is facing a looong winter hibernating in the house with the little one, I am, you could say, at high-risk for some post-partum issues. My "hormon-es" ought to have balanced out some (but not totally b/c I'm still breastfeeding (via the pump)), but apparently it's not just about women's crazy bodies. One good thing about having dealt with depression for several years, though, is that I know myself and my signs very well...the key will just be finding ways to tend to them while still protecting Sweet Becca from the germs out there in the big wide world. But all of life is a balancing act, so I guess it will be good practice. And practice I will...with the Zoloft bottle in hand! :)
Okay, I've got to tell you how cute Buster is right now, examining the baby monitor, sniffing it, cocking his head back and forth, trying to figure out how the baby got in that little plastic thing. He hears her, but he can't find her...and he's not a bright boy, so it's awfully cute.
Um, this post is totally disjointed. Again, note the lack of sleep.
So, back to life together. Like I said, Becca usually sleeps pretty well at night. John and I take shifts, so I've got 10pm-3am, and he's got 3am-whenever he decides to wake me up, which is not to be earlier than 8am. Often, though, he lets me sleep in some. He knows I value sleep very, very highly. Mmmmm...sleep...
We sleep more when Becca is well-fed. At the hospital, they usually calculate the amount of milk she got at each feeding based on her weight. According to those calculations, she needed to eat between 37 and 39 cc's (or ml's) every three hours. She had gotten a reputation as a fussy baby (yes, sweet Becca), and her primary nurse practitioner (who has a GREAT name, if I do say so myself) decided to go ahead and let her go ad lib on her feeds. And she went to town. Now that she can eat as much as she wants, she's averaging 60 cc's every 3 hours during the day and every 4 hours at night. She's a little piggy! If it were all left to her, she might actually go longer at night, but our pediatrician wants us to wake her up to feed her, at least until she hits 6 pounds.
Six pounds...sounds huge, right? When we left the hospital, she had hit 4.10. By Friday (our first pediatrician appointment - 2 days after discharge!), she was 4.12. Today, at the surgeon's office (more on that in a moment), she was 5 pounds, 1 ounce. Wow. She's huge! She'll soon actually grow out of some of her preemie clothes. Crazy!
So, we met Becca's surgeon today. Yes, her surgeon. A couple of months ago, we noticed that she had a lump in her groin (mom's sharp eyes!), which turned out to be an inguinal hernia. We hadn't thought much of it (as it was quite low on her list of diagnoses), but it's going to need to be repaired surgically, probably in early January. It's not a major surgery, but, of course, I wish she didn't have to be put under and cut on. I shook the hand that will cut my baby's skin. Sad. It will be Dr. Morgan, and he seemed great, so I'm not really worried about it (yet).
We also went to the audiologist today. This was a big appointment. Becca failed the standard newborn hearing screen in both ears not once, but twice. She's certainly at high risk for hearing loss (based on her birth weight, her large quantities of antiobiotics early one, and her hyperbilirubemia - yeah, you're impressed with that word, I know), and even though she seemed to follow voices early on, she seems to have stopped. Now, John and I agree that of all the complications for her to come through this experience with, deafness would be one of the ones we would be pretty okay with. After all, one of my favorite people in the world (and Becca's future mother-in-law) is 90% (?) deaf. But we were ready to know. The long, in-depth test they performed this morning requires that the babies be asleep, so they asked us to bring her in hungry and tired. That was not a fun ride in to Vandy. She did, however, fall (and stay!) asleep after her bottle in the office, though, so they were able to get a good reading. As of now, she's got mild to moderate hearing loss, but since her eardrums aren't moving properly, they think it's most likely caused by fluid in her middle ear. We'll repeat the test in a couple of months (to see if it resolves) and then see an ENT about getting tubes. Hopefully the timing will all work out such that we can have the hernia repaired and the tubes placed all at the same time, which would be awesome. So that we great news, but I've got to admit that one one level I'm slightly disappointed that I won't get to see Itty Bitty in itty bitty hearing aids. I know, I'm crazy, but I was preparing myself to raise a deaf child and getting pretty excited about the challenges. In the long run, of course, I'm quite thankful that Becca doesn't have yet another set of challenges to overcome. She's had quite enough, thanks.
Since we were at Vandy, we got to see some of our nurses! Hooray! We had lunch with Leigh and saw Carla up on the unit. I managed to time Becca's feedings so that each of them gave her a bottle, and we got a break. Cheeky, eh? ;) We also saw our chaplain, Matt, and our last nurse practitioner, Nancy. It was nice to be back there - and nice to walk out with our baby again. You can imagine after 4 months in the NICU, we got to know folks pretty well and miss them now that we're home.
That's all I've got for now. It's time to wake the baby up to feed her. And time to pump. And John's in bed. This could get interesting! Wow. I am undeniably a mom now - when do I grow those extra hands I need?
p.s. I'll have John post more pics soon. In the meantime, check out his facebook page for more pictures of Becca than you could possibly have use for...but they are awfully stinkin' cute!
Thursday, October 23, 2008
That's right - Becca is home! We got home with her last night around 7:30. (Yes, discharge does always take forever! I kid you not - we were trained on CPR 3 times. And we are both already certified in infant CPR. Ugh.) We didn't get a lot of sleep last night, but thanks to Nana Dana, we are all somewhat rested and very well-fed. Two home-cooked meals in one day: unheard of!
Someday I'll catch you up on the past month, but for now, enjoy these pictures of our sweet girl AT HOME!
And I'd like to dedicate this post to our FABULOUS primary nurses (in order of sign-up, of course): Millie, Heather, Stacy, Leigh, and Carla. See, I told you I'd get better at blogging so you wouldn't have to miss Becca too much!
Sunday, September 21, 2008
Tuesday, September 16, 2008
"Hopefully I’ll soon be able to update again and (this is a note to myself) be able to tell you about her growth, my results from the doctors, her moves around Pod E, the milk catastrophe, the unsupportive parent support group, and her parties. "
Okay, I'm totally out of energy today, so I'm just going to bullet-point you through the past couple of weeks.
- Becca's growth - Um, I think I was going to tell you that her growth had stalled some, but she's picking back up now. She's been up as high as 1550 grams (3 pounds, 7 ounces) and is currently 3 pounds, 6 ounces. She's getting 1/2 milk and 1/2 Similac Special Care formula, which is way beefed up - for an average of 30 calories an ounce (which, based on her weight is a TON). As of last night, she was 14.6 inches long. She able to wear some of her smaller preemie clothes now, so we're loving all those tiny onesies! (Note: she has TONS of clothes to wear, so don't get too excited on your next trip to Wal-Mart or anything. :) )
- My results from the doctors - Okay, after weeks and months of leaving each appointment with another couple scheduled from it, I have been released from all of my doctors. The specialist's best guess about what went wrong is that I was likely pre-eclamptic early on, which caused the placenta to be funky and resulted in her growth restriction. Apparently, most women with pre-eclampsia do develop it early in the pregnancy, but we don't see the measurable, diagnosable signs until later. Based on a study of women who had pre-eclampsia and developed H.E.L.P.P. syndrome before 28 weeks of gestation, it looks like I have around a 55% chance of recurrence of pre-eclampsia (to some degree) and around a 20% chance of recurrence of H.E.L.P.P. (which, I believe always indicates immediate delivery). So....those are definitely scary numbers, but we'll probably give it another try sometime down the line. I will have to continue to live near Nashville (or another major metro area with good hospitals), as I will automatically be on the very-high-risk track, with lots of extra early tests, visits, etc. Good to know, but of course right now, we're just focused on getting this little one home. Also, it looks like I may have a proclivity towards forming blood clots while pregnant (which will also be monitored in subsequent pregnancies), but outside of pregnancy, I seem to be fine there.
- Becca's moves around Pod E - Okay, it shouldn't be a big deal, but whenever my baby moves rooms, it really freaks me out and messes with my mind. Our pod (set of 4 rooms, 2 of which are "twin rooms" that hold 2 babies) had been really stable for weeks - until one of the twin rooms developed a mildew problem in the ceiling (not good for anyone - especially preemies, of course!). Those twins moved to Pod A, and they cleaned up the room. The NICU census went way up, and they got some really sick babies, so Becca had to be moved into the (now fresh) twin room with another baby. So after a month of semi-privacy at "Becca's house," we had roommates, which was fine, but it kind of sent me over the edge a little. It doesn't take much these days. Anyhow, it worked out fine, though it was a little awkward at pumping time, and after a week or so (maybe longer?? I have no sense of time anymore) we moved back to a private room - even Becca's old room, thanks to super-champ nurse Stacy. So we're back at "home" now...if only we could live here, too!
- The milk catastrophe - Speaking of sending me over the edge....that was another bad week. Ugh. I'm not even sure I can write about it yet. It physically pains me to think about it. Okay, remember all the work I had been doing pumping? And all the bottle-washing John had been doing? And how my life had to be scheduled around and really revolve around that beautiful yellow machine? Yeah, so we were storing the milk in the deep freezer at church and someone accidentally unplugged it. Almost all of it thawed out, making it unusable. That sucked. It especially sucked because a) I had hoped to stop pumping soon and b) my milk supply was starting to dry up. Because the same hormones aren't released when pumping as when you are actually nursing a baby, it's much harder to maintain your milk supply when you are exclusively pumping. Given the fact that stress (hmmm...think I've got that?), exhaustion (check), and poor nutrition (like the fast food I eat nearly every day) all contribute to a decrease in milk production, it was no surprise that after 2+ months I was having trouble. But, after The Milk Catastrophe of 2008, I had to recommit to proving my sweet girl with the best nutrition possible and re-prioritize so that I can keep producing. So if you wonder why I'm never in the church office before noon or why I don't update you as much as I should, there is a good chance it is because I am a) trying to make up for the rest I don't get b/c I have to wake up every 4 hours, b) trying to stay sane (which is really very hard work these days, no kidding), or c) guzzling as much water as humanly possible. The upside(s) of this story is/are a) my milk supply has picked back up some and b) some of the very kind folks at Bethpage UMC took pity on my and actually (very exciting!!) purchased us our very own deep freezer, which is now in our kitchen (where I can keep an eye on it!) and chock full of milk (or will be once I get around to reorganizing the milk in the other freezer).
- The unsupportive parent support group - Okay, I shouldn't be too hard on those other parents, but really, we're kind of out of their league now. That sounds awful, but let me explain. We have been here for over 12 weeks now. We have had to go back to work and somehow try to do it all. We live an hour away, and even though we have lots of folks who have offered to let us stay in town, we need to be out in Bethpage for the dogs and for work. We're looking at many more weeks here. Nearly our entire pregnancy was grief-stricken. And, yes, we are ridiculously thankful to have Becca and to be here, but I'm teetering on the edge of sanity here, and I just don't have a lot of...um...patience? compassion? for parents who are here for a 1-2 week stay. No, that's not right - I do have compassion for them...but I can no longer identify with them. One parent at the group kept talking about how her baby was so tiny, "and any procedure on a baby that small is just dangerous!" I asked her how big her baby was, thinking that maybe there was another tiny one in, and she said that her baby was "415" - meaning not 415 grams (which would at least be in Becca's ballpark), but 4 pounds, 15 ounces. He was only 1 ounce away from not even being considered premature. Ugh. I wanted to say to her, "You know, when they [performed the same procedure on Becca] they had NEVER BEFORE done it on a baby her size. NEVER, EVER. And you think you were scared?" This baby's biggest problems is one that Becca has as well, but we don't even think about because it's so minor in the scope of her concerns. Ugh. So I guess they weren't really unsupportive; they were just not the support I need right now. (By the way, I was very polite through the whole meeting; I did manage to behave myself.)
- Becca's parties - HOORAY! We had not one, but two showers for sweet Becca - and there's another on the calendar! Though they have had to be a bit non-traditional, complete with pictures of the already-arrived babe in arms (or in incubator, more accurately), Becca has had a book shower with some friends in Nashville and a regular shower with the Bethpage UMC family. Both were SO fun, and we were overwhelmed with gifts! Becca enjoys her story time (when we catch her awake), thanks to the book shower (and she won't believe all the stories she's got waiting for her at home, thanks to Aunts Lauren and Ashley!), and she is currently wearing one of the onesies she got at the Bethpage shower. After so much grief around the pregnancy and her -frankly - traumatic birth, it's been great to get to celebrate our adorable - and feisty - little girl. Her nursery is slowly taking shape (we're waiting on a furniture order to come into Babies-R-Us before we can really get things organized), and I'm determined to have it all set up long before she comes home. It's therapeutic for me to work on it in the evenings, and John even gets into helping occasionally. I'm sure when it comes time to actually arrange and stock everything, he'll be on it, too. I organized diapers yesterday and took an odd pleasure in sorting and inventorying them by size - much like sorting Halloween candy. I'm a bit weird that way. By the way, we are good on diapers. We definitely don't need any more preemie or newborn diapers - especially at the rate she is growing now! :)
- New business - Becca is so excited about the birth of her future best friend/boyfriend/PK-commiserator/punching bag, Hunter Isaac Snow! He was born this morning and weighs in at a whopping 9 pounds, 6 ounces. He was due a few days before Becca (whose due date, by the way, was this past Sunday), but he's nearly 3 times her size...but I'm pretty sure Becca will be able to take him. Even though they won't get to meet for a few more months, we're telling her all about him and making plans for big time fun and photo shoots come this January. So big congrats go out to Jason and Sarah - especially Sarah today, as she had to work for hours on the whole birth thing - she managed not to get out of the whole labor experience like some of us labor-free c-section moms. :) (Which means big props to you moms who labored AND had a section!)
Alright, it's pumping time again! Catch y'all later!
Saturday, September 6, 2008
Okay, flashback to...um...really, just after the post on breathing, I think...so I think that's 3 weekends ago...
I got a call from the hospital that Saturday morning. Katie, one of Becca's nurse practitioners (who also happens to be Coach Hart's sister, for all you Bruins out there), immediately said, "Becca's doing okay, but she gave us a pretty good scare." That woke me up. Becca had (of course) just gotten up to full feeds, but at that morning's 8 or 9 o'clock feeding, she had refluxed and then either aspirated some of her milk into her lungs or (genius that she is) closed her airway to keep herself from aspirating (as in, inhaling some of her milk - not a good thing). Either way, she stopped breathing, had to be bagged, and even had to have little baby chest compressions because her heart rate dropped so low. Thank God her nurses were right there and able to respond quickly - further proof that we are, like it or not, right where we need to be (as in, not at home). When it was all said and done, she was breathing on her own, but so worn out and working so hard that they ended up putting her back on the respirator to give her a break. She was still breathing over it most of the time, but her tiny body just needed to rest after all that trauma.
That was scary.
They ran all kinds of tests immediately following, and, of course, stopped her feeds completely. Her platelets were still inexplicably low (as they had been), but her CRP (essentially an infection or inflammation index) was through the roof. Like ridiculously high. Anything over 10 is considered high. Hers seems to hang out around 0.3 when she is well. This time it was 301. Yes, 301. One of our NNP's said that she's seen babies dying, and their CRP's don't go too much over 200. So this was weird. They also drew a blood culture, which grew a particular kind of bug that would also be really weird for her to have, since the 2 antibiotics that she was already on (and had been on for a week), would normally knock that right out. And she still wasn't acting that sick - just really worn out. Also odd was that her white blood cell count was normal. (Normally, your WBC count goes up when you have an infection because your body is trying to fight it off.) Trying to figure out what was up (and to check for meningitis), they decided to do a lumbar puncture on Sunday. That's fancy talk for "spinal tap".
That was scary.
They did the "LP" while we were at church and kept her on the ventilator through it just to keep life as simple as possible for her. Turns out she didn't tolerate it well. Well, I didn't exactly like it when they stuck a needle in my spine, either, and I knew why they were doing it. The fluid they pulled looked good, so they were able to rule out meningitis. They did go ahead and start her on another antibiotic just to throw what they could at whatever infection might be lurking. They were able to extubate her that evening, and she was back on Vapotherm - starting again at 3 liters. That Monday, they restarted her feedings (more on that later) and drew another CRP and blood culture. This culture never grew anything, and her CRP was, I think, 2.1. Big difference. We finally concluded that the initial CRP was wrong because there is just absolutely no reason why it should have been that high. One of our sweetest and kindest NNP's apparently got quite upset with the lab and, in her sweet, kind way chewed the lab folks out. That would have been fun to watch.
Now, back to the feedings. Thankfully, they were able to bump up her feedings pretty quickly, and she was soon (I don't know - a week, maybe?) back up to full feeds. They did it a different way, though, and that has seemed to really help her. Initially, her feeding tube went through her mouth and down into her stomach, so it was a oral-gastric tube. Now they are feeding her transpylorically, meaning that the tube goes down her mouth, throughher stomach (and through the pyloric sphincter), to the very top of her intestines. That way, if she had been refluxing all along and we just didn't see symptoms until this major episode, it would be harder for the milk to come back up that far (and through 2 sphincters). Also (and this is how I know she's my girl), they are feeding her continuously (sweet!) so that she doesn't ever have quite as much volume at once. This arrangement is both good and bad. It's good in the sense that she seems to be doing really well with her feedings this way (she's been at full feeds ever since we worked back up to them) and she's growing great, but it's bad in the sense that it doesn't get us any closer to going home. She still has to be able to take all her feeds by bottle before we can take her home, and now we've got several more steps to go before we can even try the bottle again. (The tube has to go back to her stomach, then the feeds need to go over 2 hours, then they have to go over an hour, then they have to go all at once (as in bollus feedings), and thenwe can start working on the whole bottle (and/or breast) thing again. Eventually, we'll probably have to do some kind of suck/swallow study to see if she is refluxing regularly or if this major episode was just a random occurence. If she does have reflux (more than a normal baby), we'll have to deal with that somehow. (Perhaps with more meds.)
Also in the meantime, they started looking at her heart and lungs more closely. They originally started doing echoes (taking ultrasounds of her heart) to see if there was an infection that could be attracting those mysterious platelets. They didn't find an infection, but they did find some fluid on her heart (a pericardial effusion) and evidence of severe pulmonary hypertension. I'll go ahead and let you know that the effusion has cleared up of its own accord over the past few weeks (we don't know why it was there or why it disappeared), but the pulmonary hypertension is a bit more complex.
Here's today's physiology lesson: the 2 halves of your heart supply blood to different parts of your body. One side pumps blood to your lungs, and the other side pumps blood to the rest of your body. Basically, when adults have hypertension it affects the side of their heart (the left??) that pumps blood to the non-lung part of your body. Becca, in contrast, has hypertension (high blood pressure) in the arteries (on the right side of the heart?) that pump blood to her lungs. This could be caused by fluid in her lungs (due to microaspiration that we hadn't noticed) of by some other things that I just don't remember right now. (Remember, I'm sleep-deprived.) If it worsened, they were going to treat her with drugs - namely, Viagra. I kid you not. Apparently Viagra (under a different name) was originally used for such conditions, until they accidentally discovered its intriguing (and lucrative!) side effect. It is a blood-flow issue, after all. At any rate, they have been following up with weekly echoes, and it does look considerably better, even without the medicine. She still has pulmonary hypertension, but it's no longer severe. I think they are switching to bi-weekly echoes now, and she'll still be followed closely after discharge, but she's improving.
In the course of all of this drama (and while I was, somewhat unexpectedly, adding youth ministry to my portfolio at work), we also realized that Becca is also now diagnosed with chronic lung disease. That kind of snuck up on me because she is considered to have it essentially because she is past 36 weeks gestational age and still on oxygen support. I'll have to save a full explanation of it for another post because it's time for us to go home now, but suffice it to say that she will also be followed closely for that after discharge and will likely have a very sensitive respiratory system for at least her first 2 years. She has a higher chance of developing asthma, but by no means will she definitely have it.
And I'll have to leave you hear for now because it's 10:00 on Saturday, and we still have 40 miles to drive before we sleep. Hopefully I'll soon be able to update again and (this is a note to myself) be able to tell you about her growth, my results from the doctors, her moves around Pod E, the milk catastrophe, the unsupportive parent support group, and her parties. Sounds like fun, eh? I will go ahead and tell you that she hit 3 POUNDS tonight! Wohoo! She's such a big (little) girl, and she's acting like it! She's officially a full-term baby now (39 weeks tomorrow), and she's acting like a newborn, even though she's 11 weeks old now. She LOVES her pacifiers and would like you to hold them in for her 24/7. She's also addicted to her Fisher Price Rainforest crib toy, so it is now on the "To Buy Before Becca Comes Home" list. It's on the top, now, in fact. She usually pitches a fit between 6:30 and 7:30 in the evening, and pretty much demands to be swaddled then. As pitiful as she is, it's great to hear her finally able to wail so loud! You can actually hear her down the hall now when she's all riled up. We knew this day was coming...she's little, but she's loud!
Thursday, August 14, 2008
Leigh Greer, this post's for you!
Becca's doing well. She's up to 1020 grams - that's 2 pounds and 4 ounces! John's giving her her daily bottle right now. She's up to 15cc's on her feeds, which is more than she's ever had! She's just under full feeds (which will be somewhere around 18cc's), and she's back to getting a bottle once a day (after a weekend off to let her catch up on breathing). I forgot to mention in my last post that she had come off the vapotherm, but since then, she had to go back on it. Now she's off of it again, for now at least. She may have to go back on it, but there is a massive vapotherm shortage in the NICU right now, so we're hanging out with the nasal cannula.
Let me try to help you make some sense out of everything I just said. I have been avoiding explaining the intricasies of her respiratory care because I cannot manage to wrap my brain around it, but I'll give it a go. All you friendly medical folks out there can clarify for me if necessary.
The highest level of respiratory support involves being intubated and connected to the ventilator. There are a couple of kinds of vents that I've seen around here. Some of them basically breath for that baby, and others send quick puffs of air at a really high rate. I think some of them are cued by the baby's attempts at breathing, and others just breathe at a regular rate. They are really complicated, and I know very little about them because I never even saw Becca on one, as (thankfully!) she was only intubated for less than a day (when I was still chained to my bed in the recovery room). So let's not worry any more about them.
Becca quickly moved to vapotherm, which is kind of a modified C-PAP that is delivered through a nasal cannula. It looks basically like a regular cannula (not the fighter pilot mask that you may have seen some folks wear to sleep), but it gives a continues flow of air at a rate of x liters per minute. The "vapo" part is that the air is humidified (even more so than most nasal cannulas), which helps keep things moist. When she first went on vapotherm, she was on something like 3 liters per minute. Eventually she weaned down to 1/2 a liter, and they switched her to oxygen "from the wall." That happened before we moved over to the children's hospital. When her infection popped up, though, they had to put her back on the vapotherm so that she wasn't working as hard to breathe. They almost had to intubate her (again, not because she wasn't breathing, but to give her some support while she was feeling so puny), but she stayed strong enough not to have to do it. After her infection, it took longer than before (or so it seems to me) to wean down again, but last week they were able to take her off the vapotherm and switch to a regular low-flow nasal cannula. Then, like I said, she had to go back on it, and now she's off it again. Pirate ship, anyone?
After you come off vapotherm, you get hooked up to the wall (literally), from whence is delivered either pure or blended oxygen. Becca's on the blended version, meaning they can control the amount of oxygen in the air that is blowing through her cannula. They can also control the flow. At the moment she's on 1.5 liters of flow, with her oxygen level at nearly 40% - which tells me that she's likely to be back on the vapotherm as soon as one becomes available. She's "satting" high, meaning that the level of oxygen in her blood is high (which is good, unless it hangs out too high for too long, which can damage her eyes - weird, I know), but she's usually on around 25% (room air is 21% oxygen), so it looks like the cannula isn't cutting it yet. The air from the cannula is humidified a little bit, but not much, so if she continues to require this high a flow for a while, drying her out becomes a concern as well (but not a big one, I think).
Before she goes home, she'll have to be off of all of it. I think some babies are sent home on oxygen, but since she doesn't have any structural issues or (at this point) chronic lung disease (from being on oxygen too long), she really shouldn't need to be discharged on oxygen. Overall, she's done very well with her breathing, but she has consistently needed some sort of flow (or pressure), even when she's been just on room air. Theoretically, she should be growing out of her oxygen needs soon (as in, a baby born at her current gestational age probably wouldn't need much - if any - support), but she's not there yet. As usual, she'll tell us when she is. And I'll be thrilled to mark that off our "to do before Becca can go home" list. Then she's got to take the bottle and hold her temp. But we're getting there. I don't see her going home by the end of the month, though, like we had started to think might be a possibility (though a very optimistic one). So she's made a lot of progress, but she's got more to do...and my patience is running short. But we'll take her whenever. She's a keeper. And I love her!
Saturday, August 9, 2008
People often use the analogy of a roller coaster ride when talking about life in the NICU, and I definitely see what they are getting at. For me, though, it seems more like the pirate ship ride at the state fair. You know, the one that constantly goes back and forth and back and forth and back and forth, getting higher and higher with each swing. And that's the kind of motion that really makes me sick. Because Becca has been so stable, it hasn't seemed so much up and down as a roller coaster, but we definitely seem to be taking several steps back for each step forward.
Take last week, for example.
I wrote on here on July 27th that Becca had hit full feeds. Just a few hours later, however, they stopped her feeds COMPLETELY. According to her doctors and nurses, her belly had started looking big and she had been having more spells, which made them suspicious that she was developing an infection. Apparently it's not all that uncommon for babies to get an infection right after their PICC line is removed; there's a theory out there that a few bacteria lingering in the end of the line are shaken loose when it is removed. So they stopped her feeds completely (dropping to 0 from the 13 we'd just finally worked up to), gave her IV fluids, put her on antibiotics, drew a blood culture, and (the next day) put another PICC line in and started TPN feedings again.
Big step back.
It had taken weeks to finally get her up to full feeds, and she was only on them for less than 12 hours. The really frustrating part, though, was that she didn't seem sick to me. She was still acting like herself, poochy little belly and all. Obviously, I'm not a professional, and I'd rather be safe than sorry, but this momma was pretty darn sure that she wasn't getting an infection. I think the timing was just off. Because Vanderbilt is a teaching hospital, Becca's doctors rotate every 3-6 weeks, as do her primary nurse practitioners. Her primary nurses, however, stay the same, thank goodness. Well, the rotation happened to hit right when all of her primary nurses (who know Becca very well by now) happened to be off, so she ended up with a new doctor, new NNP (neonatal nurse practitioner), new day nurse, and new night nurse, all at the same time. Becca has always had a poochy belly, even before she started eating, and those of us who know her well are used to it. I have listened to and watched many brilliant and talented doctors, NNP's, and nurses be very tentative with her belly at first and then eventually get used to it. She's just got a big belly. (Let's face it; it runs in the family. ;) ) But when she ended up with all these new folks at once, there was nobody to say, "Let's give her a chance - that's just how Becca looks. If she's really sick, she'll give us another signal." And, so, because we've got to be so paranoid about NEC (it's BAD news), they stopped her feedings cold turkey.
That was July 27th. It's now August 9th, and we're just now halfway back up to full feeds. They gave her a few days of "bowel rest" (great phrase, right?) and eventually restarted her feedings. When you restart, though, you've got to start at the very beginning again. So we're back on the long road up to full feedings. They did keep her on antibiotics for 7 days, though her culture never grew anything, meaning she either never had an infection or they caught it so early that the antibiotics knocked it out right away. I'm sure you can tell which I thought it was. Some of her regular nurses and I were quite, um, annoyed that they automatically stopped all feeds instead of backing off some and seeing how she would do then. When I tried to ask the attending NNP if she had seen Becca's belly normally, I was (for the first time, I'm glad to say) met with some resistance to my input. Resistance, that is, along the lines of, "I know what I'm doing, thank you very much." Yes, you do, but, like I said, I've also watched lots of other professionals be scared about her belly and then come around to it. But it was late in her 24-hour shift, so I'm willing to cut her some slack...but, darn, I wish that this bump in the road - legitimate or not - had not put us back at least three weeks behind. And that makes me want to make my pirate face, hook my finger, and say, "Aaaargggh!" I'm a NICU pirate.
But her time has not been totally wasted! She has still been growing, and she's now up to 2 POUNDS! Wow! What a fatty! She's also starting to take a bottle, which she's getting to try once a shift. (Because it takes a lot of energy to suck - and thus burns precious calories - they limit it to twice a day.) She's doing pretty well, sometimes taking up to half of her that feeding P.O. (that is, by mouth), though it's usually much less (I think overall, she's taken an average of 12% of the bottle feedings she's been offered). She's also started breastfeeding a bit, though "feeding" is too strong a word for it. We're not depending on it to actually get any food (so she's still getting her 8 cc's even when we nurse) - her NNP (named Nancy, by the way!) says that we're just doing it "for fun" right now. And it is fun! It's nice to have her so close to me, and I think she likes it, too. I can imagine, though, how frustrating it must be for new moms and babies who actually are trying to get the whole breastfeeding thing down while trying to meet all their nutritional needs through it. She probably won't be able to exclusively breastfeed because we'll need to monitor her caloric intake (to make sure that she's getting enough), even when she goes home, but it's nice to be able to do it some now, and eventually, she may be able to nurse a few times a day. In the meantime, she's up to 8 cc's each feeding (down the tube, unless she takes some of it from the bottle). With her new chubby weight - 900 grams! - full feeds will be somewhere around 16 or 17 cc's, so we're halfway there.
I'm awfully proud of her these days! When I'm giving her her bottle or nursing her and she looks up at me with her puffy baby cheeks and her pretty eyes open, I just melt. It's like she takes a suck and looks up at me like, "Is that what I'm supposed to do? Am I doing it?" It's so cute! She's pretty much the cutest thing ever. So that's the update. Sorry it took so long. I really appreciate all the comments, though. I read them, even when I'm keeping my own (electronic) mouth shut. So keep those prayers and chubby thoughts coming! I'll have John post some more pictures below. They're adorable!
Sunday, July 27, 2008
Wednesday, July 23, 2008
On an entirely less celebratory note, I'd like to ask you to pray for our friends the Berlin family. They are members of our church in Louisville, and their 2-year-old son, Henry (but better known as "Buddy"), died in an accident last night. I can't even begin to imagine what Mark, Tammy, and 4-year-old Greta are going through. You guys have proven to be a community of prayer, so please make sure to lift them up in this horrible time. As I've said before, we can't get through tough times without the support of our faith community, both far and near - so let's join together in supporting the Berlins. Henry's service is Friday. (You may recognize Tammy's name from the blog comments - she's a part of Becca fan club and a great encourager.)
Sunday, July 20, 2008
Tuesday, July 15, 2008
(By the way, they restarted Becca's feedings today. She's again on 1cc of milk every 3 hours. Let's hope and pray that she tolerates it well and can bump up on her feeds quickly so she can grow like a weed like I know she wants to! Also by the way, don't worry about the IV in her head in these pictures. It looks way scarier than it is. It's just like the IV's that are normally in her arms or legs, but since most of those spots have been used, they've moved to her scalp, where babies' veins are really easy to get to. She doesn't seen to notice it any more than the other sites, but I hate to see wires practically coming out of her sweet face. Even though her TPN feedings go in through her PICC line, she still needs IV's for some of her meds and to receive blood when necessary.)
Sunday, July 13, 2008
Here are some pictures of our kangaroo care:
Yesterday we got to start "kangaroo care" with sweet Becca. Being the mom and all, I got to go first, but John got his turn today. Hence, the names: John is now Captain Kangaroo, and Becca is my sweet little Roo. John does not yet know about his new name. I thought I'd go public first so that he can't fight it too much. So all you who have been known (for reasons unknown to me) to call my husband "Little Johnny Trombone," feel free to add this name to your repertoire.
Apart from being a children's t.v. star from the late '70's, how does one become Captain Kangaroo, you ask? Here's an explanation of kangaroo care from the March of Dimes website:
"Kangaroo care is the practice of holding your diapered baby on your bare chest (if you're the father) or between your breasts (if you're the mother), with a blanket draped over your baby's back. This skin-to-skin contact benefits both you and your baby.
You may be a little nervous about trying kangaroo care. If your baby is very small or sick, you may be afraid you'll hurt him. But you won't. Your baby knows your scent, touch and the rhythms of your speech and breathing, and he will enjoy feeling that closeness with you. Kangaroo care can help your baby:
- Maintain his body warmth
- Regulate his heart and breathing rates
- Gain weight
- Spend more time in deep sleep
- Spend more time being quiet and alert and less time crying
- Have a better chance of successful breastfeeding (kangaroo care can improve the mother's breastmilk production)
Kangaroo care has emotional benefits for you, too. It builds your confidence as you provide intimate care that can improve your baby's health and well being. You are giving something special to your baby that only you can give. By holding your baby skin-to-skin, you will feel the experience of new parenthood and closeness to your baby. Kangaroo care is healing in many ways, for both you and your baby.
Ask your NICU staff about its policy on kangaroo care. Some NICUs postpone kangaroo care until the infant is medically stable, while others use it from birth onward. Kangaroo care is safe and beneficial, even if your baby is connected to machines. Whatever your situation, kangaroo care is a precious way to be close to your baby. You will cherish this time.
Kangaroo Care: The Best You Can Do to Help Your Preterm Infant, by Susan M. Luddington-Hoe and Susan K. Golant (Bantam Books, 1993). "
Essentially, then, we got to hold Becca for the first time this weekend! It was so crazy and wonderful and slightly awkward. Since she can't maintain her own body temperature, we have to be really quick when moving her from her isolette to her "pouch" under the blankets, gown, etc. on our chests. You basically get her cuddled in there and don't move her. We each got to hold her like that for a little more than an hour. She's still got all her machines and leads hooked up to her, so you've got wires hanging everywhere, and it's hard to even see her just beneath your chin, but you could feel her squirming! John asked what it felt like yesterday, and the best analogy I could come up with is that it felt like holding a hamster in your hand. And, truth be told, Becca's really not all that much bigger than a hamster. She's definitely smaller than your average Guinea pig. But she's as slobbery as a kid with a candy apple! She left quite the little slobber pile on my chest when she was done. And she seems to be great keeping her body temperature up. She appears to take after her sister, Sasha, whose average body temp while sleeping is approximately 650 degrees. She was a hot little tamale!
She's not as little as she used to be, though! This week she hit a major milestone - 1 POUND! Last night she even weighed in at 500 grams (just over 17 ounces). If you remember from previous entries, 500 grams was the magic number we were hoping and praying she'd get to before she was born. According to all the experts, she needed to be 500 grams in order to have a chance at living - in order to be "viable." Of course, these experts had never met Becca or the amazing community that surrounds her. Starting out at only 370 grams, she proved to be far more than viable! As I've said before, she's quite the amazing little girl, and she's received care that rivals her amazing-ness (or amazingosity?). I usually think about what a miracle she is - but today I'm struck with what a miracle it all is. That is, I firmly believe that it has taken the incredible mix of a baby with the strongest will to live I've ever witnessed, a phenomenal staff of nurses, doctors, and therapists at a cutting-edge facility, and the incredible and expansive support system that can only be called the body of Christ. I know neither we nor Becca could have made it this far without each other and without you. So, again, thanks for all your support. Keep those miraculous thoughts coming!
As for an update on her physical condition - Becca's holding strong, but her infection does seem to be lingering in her PICC line, so they are thinking about removing it. Thus far, they've decided not to because removing it (and eventually replacing it in a few days) would be tough on her, so I think they are basically holding out and hoping that it clears up soon. She's way better than she was a few days ago, so I'm hoping that a few more days of antibiotics will take care of the problem. Unfortunately, though, they are going to wait to resume feedings until she's finished her antibiotics. The infection has caused an ilius (which I think is basically a blockage in her intestines, but I'm really unclear on this point) that makes them hesitant to put her back on the milk, but they think it will likely resolve itself as the infection clears up. But all in all, she's doing great...and so are we, now that we've finally gotten to hold our baby girl!