Friday, February 27, 2009
Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. - Mary Jean Iron
Ah, we preemie moms know this to be true!
Monday, February 23, 2009
Thanks for the pictures and the wonderful weekend, Dana!
[caption id="attachment_202" align="aligncenter" width="500" caption="Nanny Hitchcock, Mammaw Great, and The Boo"][/caption]
[caption id="attachment_203" align="aligncenter" width="500" caption="Becca smiling at tummy time. I think she tolerates it more because now she knows she can roll over when she wants to."][/caption]
[caption id="attachment_204" align="aligncenter" width="400" caption="She's been into her tongue for a while now, but now she really loves to rub it over her gums - I think it helps with the pain."][/caption]
[caption id="attachment_205" align="aligncenter" width="500" caption="Becca in her new dress - with her first dress ever laying on top of her. Wow!"][/caption]
Becca likes to sing “Head, Shoulders, Knees and Toes,” so when I started writing this post this song came to mind. Not much to say about her head (still big, round, bald, and adorably Yoda-esque), shoulders (expect that she has little dimples on the backs of them like her Nanny Hitchcock), knees (um, what is there to say about any knees?), or toes (that she still can’t get to her mouth because her tummy is so big she can’t fold that way), but a few things to mention about the others.
We went to see the pediatric ophthalmologists last Monday, and I was THRILLED to find out that the resident we saw at first, Dr. Armstrong, was actually FAMILIAR WITH SEPTO-OPTIC DYSPLASIA! This was the first doctor I had talked to since we were in the NICU that knew anything about her condition (and even the neonatologists were kind of fuzzy on it – they really don’t see it much!). He said that the most important specialist to follow her would be the endocrinologists (check) because the endocrine symptoms are the most life-threatening. The ophthalmologists will follow her optic nerve issues, but he said that it’s really not important (or worth bothering) to have a neurologist follow her, even though the root of the issue is that she is missing a part of her brain, as it’s a part that, frankly, doesn’t do much of anything. Who knew. (My guess is that it does something, but we just don’t know what yet. I mean, do we really just have excess brain matter, or have we not figured out everything about the brain?) I was glad to finally get some answers on that one.
And more answers I was glad about…Becca’s eyes look GREAT! The concern is that her optic nerves were likely to be misshapen and small, but they appear to be fine (perhaps on the small side, but fine nonetheless). Thus it looks like my constant worry that she was going to suddenly go blind can be set aside! We went from looking at possible deafness and blindness to neither. Hooray! Becca is a little bit near-sighted, but not enough that she needs glasses yet. She will likely need them earlier than most kids, but I can certainly handle that! Virtually every member of both John and my family is near-sighted, with the exception of my brothers, so she was going to be a little 4-eyes eventually. Dr. Morrison (the attending ophthalmologist) also went ahead and checked her for any ROP developments and decided that she is clear there as well, so we were able to cancel our ROP follow-up in April. We’re not totally released from the Eye Institute yet, as she remains at high risk for developing eye problems, but we don’t have to see them again until August. Fabulous!
Becca is now three weeks out from the ear tube placement and we’ve definitely seen a difference. She is LOVING hearing herself, and she makes all kinds of funny noises. She liked to squeal before but now it’s sheer bliss (for her at least). She’s pretty cute when she’s happy and squealy. Sometimes she cracks herself up simply because it’s fun to yell. Unfortunately, though, she got an ear infection last week (even though she hadn’t gotten a single one before the tubes), so we had to start her on some drops. It’s healed up pretty quickly, but I think something’s a-brewing in the other ear now. Good thing we’ve only used a very tiny portion of the drops – they cost $135! Thank you, insurance! We saw Dr. Werkhaven (who placed the tubes) today for her follow-up, and he said that she looked great – even though her ears are so small that neither he nor the nurse practitioner could actually see the tubes. We talked about earplugs, but he was adamant that her ear canals are so small that the chance of actually getting water down in her ears is miniscule. I’m not sure I believe him, but I’ll give it a chance. And I’d like to give a shout out to Bonnye Beeler and Steve Graves, who make sure that we’ve got good, chlorinated water out here in Bethpage. You’re saving my baby’s ears! J While we were at the hospital today, we got to visit briefly with Nancy, the NNP who had Becca for several months, two of our fabulous nurses, and Becca’s miracle worker, Gwen, the speech pathologist who saved Becca from the g-tube and shared with her the pleasure of eating. And you know how much we like eating in the Hill house. It was great to see everyone, and they loved squeezing Becca’s super-chunk thighs.
And onto the mouth…we’ve got major activity here. I’m pretty sure that Becca is working on not 1, not 2, and not 3, but 4 teeth all at once. They haven’t erupted yet, but you can see them through her gums. She’s kind of miserable about it. I would be too, really. In the long run, though, I guess it’s easier to go ahead and get a mouthful at once. But for now, she’s chewing on absolutely everything possible. We’ve tried Baby Oragel, teething tablets, chewing on Zwieback toast, chewing on burp cloths, chewing on fingers, chewing on pacis, chewing on…well, you get the picture. I really think she may pop some of them out before the weekend. Watch out, Grandma and Granddaddy Speas – she might bite you on Saturday! We are very curious about the quality of her teeth, since they mostly form in utero – as in, when Becca wasn’t getting many nutrients. Obviously we can deal with bad teeth, but we’re curious. Regardless, she’s going to be adorable with a mouthful of teeth – she’s awfully small for them!
All I have to say about her nose is that it remains adorably tippy like her sweet father’s nose. She’s such a twin of her daddy, right down to the shape of her head, according to one of her nurses. Of course, we’ve had our share of chuckles about her having her daddy’s haircut as well. As always, I say, “Bald is beautiful!”
Straying from the song, I want to mention two other points of interest. Becca turned 8 months old on Saturday, so today marks the day that she has now lived at home longer than at the hospital. My baby is right where she belongs – at home with us. That makes me so happy. Every now and then I turn to John and say, “Becca is sleeping right down the hall! How cool is that?” I know she needed those 121 days in the hospital, but, boy is it nice to live with her. I think she and I actually make much better roommates that John and I do. She has no problem making a mess, and she never asks me to clean up. J And speaking of my roommate, John turns 29 on Wednesday. I’m going to be a bit sappy for a moment, so please forgive me, but I do want to publicly say just how amazing John Hill is. He’s the sweetest dad possible to Becca. At least one day a week they have “Daddy and Daughter Day,” when I get to go into the office, and they get to hang out at home. I’m only a little bit sad to say that I don’t think Becca even notices I’m gone on those days! She loves her daddy so much – especially his fuzzy beard – and he takes great care of her, not to mention the dogs and the house. Often on such days he has dinner ready on the table for me when I get home. Amazing. If only he didn’t like his job so much, he’s made a great stay at home dad. But he does love his job (most days!), so I’ll take Superdad whenever I can get him. (Just for the record, he’s still fabulous the other days of the week – he just has to squeeze in the whole pastoring thing in the midst of his fabulousness.) I don’t want to perpetuate any myths about marriage being a breeze or perfect or even simple – we definitely have our less than fine moments, especially as we try to “co-pastor” and stay married – but I can definitely say that John makes marriage worth it. Thanks, J-Bug! (Please, everybody make sure you call him that, by the way. He’ll love you for it. )
When Superdad has emptied the camera (or SuperNanny uploads her pictures), I’ll tell you about Becca’s big trek to Ashland to meet her great-grandmothers – so fun!
Saturday, February 7, 2009
[caption id="attachment_181" align="aligncenter" width="500" caption="Becca in the outfit I bought the day they told me that she was a girl - and that she would never make it. Proved them wrong - almost a year later, but she's wearing it! Read "The Background" from May to remember that day."][/caption]
[caption id="attachment_182" align="aligncenter" width="500" caption="Trying out cereal!"][/caption]
[caption id="attachment_183" align="aligncenter" width="500" caption="One full rocking chair"][/caption]
[caption id="attachment_184" align="aligncenter" width="500" caption="Our Burger Queen"][/caption]
[caption id="attachment_185" align="aligncenter" width="500" caption="Back at the hospital - happy and kicking before surgery - and before she was totally starving! Daddy looks concerned here...but all went well!"][/caption]
[caption id="attachment_186" align="aligncenter" width="500" caption="Finally - proof that she does smile!"][/caption]
[caption id="attachment_187" align="aligncenter" width="500" caption="I guess this is why the swings come with buckles. Oops."][/caption]
[caption id="attachment_188" align="aligncenter" width="500" caption="Here's what Becca thinks of tummy time..."][/caption]
[caption id="attachment_189" align="aligncenter" width="500" caption="Why stay on your tummy when you can roll over? And if you can end up somewhat upside-down in the process, even better."][/caption]
[caption id="attachment_190" align="aligncenter" width="500" caption="Becca's mom is a little weird and tried to hide her from her daddy. It almost worked."][/caption]
Wednesday, February 4, 2009
[caption id="attachment_179" align="aligncenter" width="500" caption="You can see here that her hair looks auburn-ish in some lights - I'm hoping it turns out the color(s) of John's beard!"][/caption]
Tuesday, February 3, 2009
We are settled into our room for the night. The hospital is TOTALLY full. They are literally sticking patients in the linen closets in the Emergency Department. We feel somewhat lucky to at least have two camp cots in a recovery room with her instead of being parked in the hallway somewhere. We're kind of in a dungeon back here - no TV, no bathroom, not even a sink - but they do have an Icee machine right outside our door! Yum!
Becca only has one wire attached to her - her pulse-oximeter. The reason they are keeping her overnight is that former preemies are at a high risk for post-anesthesia apnea (where she forgets to breathe) for the 12-24 hours after surgery. Her pulse-ox will buzz if her oxygen saturations drop. She also still has an IV in, but right now it's not actually hooked up to anything. They will just use it for meds during the night. Hopefully, if she looks good and doesn't have any apnea episodes during the night, we'll be released relatively early tomorrow. We'll see.
In other good news: Becca is only on bath restriction until Friday! Yay! Our water bug will be back in her natural environment in just a few days.
I hope we're in for an uneventful night, but I'll let you know via this blog if anything changes. Thanks for your thoughts and prayers!
Hi! Becca is still in surgery at 4:54 CST. They took her back at 3 (1.5 hours late, of course), after we starved her for 7 hours - poor baby! She was quite mad at us by then (though not as back as I had imagined she would be - she was happy to get to be naked so much of today). They have placed the tubes (the smallest size they make, of course) in her ears and have discovered that she also has a hernia on the right side that they will repair as well. That's all we know so far! I'll keep you posted!
Sunday, February 1, 2009
I've been working on a great post about developmental issues (and how Becca's development is awesome), but - and I know you've heard this before - I haven't gotten around to putting it on "paper," so bear with me. I did just finish a weekend leading a trip of 35 (mostly youth), complete with a trip to the hospital (back to VCH!) and a broken-down church bus, so cut me some slack. (All are now well, thank God, excepting the bus transmission.)
But I did want to give all you Monday morning readers a teaser and a heads-up. Becca will be having her long-awaited surgery Tuesday afternoon at 1:30. Dr. Morgan will repair her left inguinal hernia and check for one on the right, and Dr. Werkhaven will place tubes in her ears. While she is still sedated, the wonderful audiologist Mary will repeat the ABR, which is the extensive hearing test to make sure that the tubes do, indeed, fix her hearing issues. We should know something relatively definitive about her hearing by late Tuesday afternoon.
Each of these procedures are considered minor and would be outpatient surgeries for a less medically-involved child, but they will keep Becca overnight for observation, as we aren't sure how she will do with the anesthesia. (So finally, a chance to see our fabulous night nurses!) We will not be back in the NICU; we expect to be up on one of the higher floors, but if things do get complicated, she would end up in the PICU (Pediatric ICU) now that she's a graduate who has been out in the big, wide world (though that really just means our house). We expect to be sent home sometime Wednesday afternoon.
John and I are feeling pretty good about the surgery. We're particularly excited for her to finally get the tubes in her ears, as even though she is definitely hearing better than she used to, we're afraid that her hearing loss is already affecting her communication development. (That is, it's affecting her in ways that she will make up pretty easily, but we'd rather get the show on the road if she is going to eventually have normal hearing - or know for sure if she is not.) We are, of course, nervous, as any parent would be with the risks of anesthesia, but her risks are a bit greater than most children's, and she has less reserve if anything does go wrong. However, she's already showed us how incredibly strong and resilient she is, so I, at least, feel a little less nervous that I might had she not already come through so much. That might be a little counterintuitive, but perhaps you understand.
Assuming she comes through the surgery and anesthesia fine (which I'm going to assume until I have good reason not to do so), I'm most concerned about the next week or two. Becca's gotten into a pretty good routine these past few weeks (though Mommy's trip this weekend threw it off a bit), particularly concerning the nights. She's sleeping great, but she won't go to sleep without a bath. She LOVES her bath. And we love giving it to her. But she won't be able to take one for 10 days post-surgery (in order to keep the incision dry). We are already plotting ways to get her in the tub and convince her she's having a real bath while just sponge bathing her so that she'll still be in her routine - and thus, sleep.
I just said that my biggest concern is whether or not Becca will be able to sleep at night without a bath. Look at some of the old posts and think about how amazing our girl is! From "will she live" to "will she let Mommy sleep all night" - nice. What's a little surgery for a girl like that?
We are well-acquainted with Vandy's WiFi, so we'll be sure to post an update as soon after the surgery as possible. She's likely to be sedated until around 4 CST (but who knows when we'll actually get settled in a room, etc.). I'll try not to leave you hanging on this one! We'd appreciate your prayers and feel free to share this information with your church staffs, etc. (you know, since we've got a pretty clergy-heavy readership here...I'm willing to bet that one of you is reading this post while in a boring staff meeting!).
Be well, do good work, and we'll be in touch.
p.s. Height and weight check: 20.5 inches and 9 pounds, 3 ounces. She now eats her birthweight in milk each day. Chunky monkey!