Adjusting (Happy Second Adjusted Birthday!)

Today is Hallie's and Olivia's should-have been second birthday. It's amazing, and a bit frightening to me, how quickly time flies. Didn't we just celebrate their actual second birthday? And can it really be four months since Hallie started talking, nearly a year since she started walking, and just shy of two years since she came home from the NICU?

October is always an emotional month around here, and it always creeps up on us. The overtly traumatic nature of June, when Sharon went into labor with the girls at 23 weeks even and had them four days later, eclipses that more subtle sorrow of October. The joy of celebrating Hallie's actual birthday--for she has unexpectedly come so far and so single-handedly demonstrates the adage that statistics have no bearing on the individual case--to some extent tempers the bittersweet nature of June, which is indelibly tainted by the sheer horror--for there is no other word--of our twins' birth and the awful roller coaster ride that ensued and the loss of our sweet Olivia Skye. We sort of forget about October all summer long, and then here it is: the day that the girls should have been born, the day that would have likely signified their auspicious start in life. Way back when, two plus years ago now, our goal was for Sharon to give birth no earlier than Labor Day. We figured that twins would come sooner than would a singleton and that 36 weeks would be term enough for them. So we were planning on an early September birth and anything after that would be icing on the cake, so to speak. Not in our wildest nightmares did we consider that the Fourth of July would look like an acceptable vantage point from where we found ourselves just over two years ago.

October does have its up sides, though. Hallie came home a week after her due date, on the 10th of October, and though she had tubes and monitor leads attached to her and though she was so small--she looked like a giant to us, but very frail to the rest of the universe; our excellent pediatrician recently admitted to us that he was quite overwhelmed by her size when he first met her--we knew that she was going to make it once she was discharged from the ICN and into our arms. And October is, in a lot of ways, Hallie's favorite month because it ends with Hallowe'en, which is apparently her favorite holiday.

We are hoping that October is a quiet month around here this year; we are almost certain that the drama of last October, when Hallie could keep almost no food down and when we were slowly losing our minds from this and from the sleep feeding that Sharon did in order to keep our girl growing, will not be repeated this year. We've learned so much about how Hallie's system works over the past year and this empirical knowledge serves us well. Our little girl is a heck of a lot happier this year than last, something that struck me quite vividly as she and I cuddled before her bedtime bottle just a bit ago. Her color is better, her mood is vastly improved, and she is developmentally a very different kid than she was on her first corrected birthday. This by no means implies that we accept that ridiculous notion that preemies are "caught up" by age 2. We still see differences between Hallie and her full-term peers, and we're still quite vigilant about making sure that she has all of the resources in the world available to her, particularly where speech and language communication are concerned. But all in all, we know we are blessed and we know we are lucky. And, for the first time in a long time, after the nice stretch of pretty smooth sailing we've experienced over the past month or two, we're feeling optimistic that we can get this food allergy thing under control and keep ahead of it.

We are also hopeful, in a guarded way, that this pregnancy will at least outlast the previous one for Sharon. Sharon will be 22 weeks tomorrow, and we're on high alert for any problems, but things have been pretty good for the past couple of weeks. We're taking it one day and one week at a time right now, and are breaking our long range goal (a full term baby) into more manageable interim milestones (like it would be nice to reach the traditional milestone for viability, which is 24 weeks, this time around, and then we'll set our sights on having a third trimester).

And finally, we are grateful, on this adjusted birthday for the things that parenting Hallie has brought to us. We've not only learned a whole heck of a lot more about the worlds of science and medicine--things that I suppose are useful, though I wouldn't have minded not knowing them--but parenting Hallie has made us better parents. We are more patient, thoughtful, and forgiving people and I think that Hallie has also taught us a lot more than we would have ever otherwise learned about not just paying lip service to accepting difference and such (for better or worse, depending on your perspective, Sharon and I are educated East Coast liberals and so the language of tolerating difference is something with which we've both grown up, more or less). Parenting Hallie has made this into a lived experience for us, and that is an unmitigated good thing. We would have raised her to be a nice kid (we hope!) and most certainly would have taught her that everyone out there is equal, regardless of their visible or invisible disabilities and differences, but I am not actually sure that we would have come into as much close and personal contact with people with disabilities and translated the abstract construct of 'accepting difference' into something that she--and we--actually live. I was just saying to Sharon tonight that, had it not been for Hallie and our concerns about her speech and language development, we would have probably been just like every one of our other friends: we would have talked about, and perhaps even taken, a Baby Signing class or two, and perhaps bought a book or two about sign, but we'd never have embarked on teaching our child--or ourselves--American Sign Language or made signing part of our daily lives. And this 'accepting difference' business is not just about accepting those who are differently abled, either; parenting Hallie has brought me into a world where I am in very constant contact and interaction with many parents whose worldviews--religious, political, spiritual, geographic, what have you--are vastly different from my own. Getting outside of my own comfortable cocoon of accepted beliefs is a good thing; I have learned to appreciate all sorts of differences -- and not just tolerate them -- as a result of being Hallie's mama. The circumstances of Hallie's and Olivia's birth still remain traumatic and awful, to be sure, and there's nothing that I would not give for their adjusted and their actual birthdays to have coincided. But in the spirit of making lemonade---and really much more than that---from lemons, the good things that we have gotten from parenting Hallie do matter and are things that I hold very dear as I reflect on Hallie and Olivia's should-have-been birthday tonight.

So even though we're no longer supposed to be adjusting Hallie's age anymore, and even though we've adjusted -- more or less -- to the new normal, I cannot help but think about all of these things tonight.
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On a more mundane, but very significant note: we're now on 121 vomit free days around here, which places 150 totally within reach!

Let Them Eat Cake...the (Adjusted) Birthday Suit Edition

Last night, we celebrated Hallie's first adjusted birthday. I don't know whether we will continue to do this, but this time around, we decided to do something nice and low-key to celebrate the fact that Hallie is nearing her entry into toddlerhood.

Hallie did seem to enjoy this party more fully than she enjoyed her birthday party back in June. Maybe it was the size of the celebration, which consisted of 8 adults, including our commune--Mark and Vanessa, and Josh and Nancie, who was also celebrating her birthday--and Renee and Kim, and 2 kids (Karina and Ethan), and its scale/location (at home). Maybe it was the fact that she is now truly acting like a near-toddler (more active, mobile, and alert) and maybe it was that she was actually feeling well (back in June she was in the throes of what would end up being a 14 week long illness/sinus infection) that made the difference. It certainly helped that she did not throw up three times before her party (she did this back in June; and to put things into further perspective, that party was held at 1pm and this one at 8:30pm).



In any event, Hallie had a nice day with Ami, her nanny, yesterday and played hard and ate well. (Aside: we're finding it very odd to think that Hallie has this whole other life of going to cafes and such that we are not privy to... It makes us aware of how lucky we were to have been able to spend the entire first year of Hallie's life at home with her. Other than a few dinners out, the ill-fated trip to Las Vegas, and one minor surgical procedure that I underwent, one or the other of us was with our girl 24 hours a day during that first year home. Most people don't get to do this, and so, even through all of the illnesses and vomit and oxygen and the like, we count ourselves as lucky. This all changes in a couple of weeks when Sharon goes back to work full time, but I am sure that this will open a whole new chapter in our lives as a family).

It was great to see Hallie at the end of the day yesterday. Even if she couldn't keep our Phitin' Phils' from sinking deeper into a playoffs hole, she could lift my mood. When I walked in the door yesterday evening, Hallie let out a squeal and demanded that I pick her up and hug her. She gave me the tightest, best hugs I have ever felt and nuzzled my neck and made these very happy cooing noises and, from what Sharon and Ami reported, flashed huge smiles. She then demanded that I read her her favorite books (the Baby Face book---the second copy I recently purchased after she ripped up the first one--and the Oh David! board book). And, instead of just throwing them at me or even bringing them to me and opening them suggestively, she actually signed "more" over and over when she wanted another reading. Something has clicked with Hallie in terms of language and communication this past week, and we are all really proud of her. Her Speech Therapist, Jenny, was actually so happy about this that she began to cry. She admitted to us the other night that she was having trouble sleeping because she was so worried about Hallie's speech (or lack thereof) and that she was considering not having us wait until December to see the SLPs at CHOP to get Hallie officially diagnosed with apraxia and to figure out whether this was some alternative approach we might take to Hallie's speech. That's all off of the table now, which is a relief to us, as well. Yes, Hallie is speech delayed, but it seems to be a delay and not a disorder that affects motor processing and might be indicative of some larger neurological problem (there's the specter of Hallie's IVH---it was a small one, but still head bleeds are worrisome). We don't really know how quickly Hallie's speech will progress, but Jenny's point is that we're seeing progress.

Anyway, while I was playing with Hallie, I told her that she was going to be having a party that night and that her friend Karina was going to be coming over. As soon as she heard Karina's name, Hallie sped-crawled over to the door to our foyer, pulled to stand, began to bang on it, and started babbling "da, da, daddy, da, da" over and over. It was so cute! She knew that her friend Karina comes to visit her by coming through that door (or that, conversely, she needs to open the door to leave the house to go next door to Karina's). So I decided to indulge Hallie and picked her up and take her next door to see Karina. Karina was still getting ready for Hallie's party but Vanessa let us in, and as soon as Karina heard that Hallie was over, she made Lindsey, her nanny, bring her downstairs. The two girls squealed in delight (it was as if they hadn't seen each other for weeks, not hours) and hugged and kissed. Hallie, however, still needed to eat her dinner before everyone else came over (feeding her in front of anyone but Elmo and co. is a bit of a disaster), so we needed to bring her back home. As soon as we walked out the door, Hallie began to bawl...Quite the drama queen, our girl, and totally an at-risk child where being spoiled is concerned.

Sharon did manage to get dinner into Hallie and got her dressed in the lovely dress that my mom got her for her first birthday:


In this second shot, Hallie is holding her bowl and spoon. But note: they are empty. Self feeding with utensils is quite a ways off for us:


A little bit later, everyone came over for pizza and cake. The kids had a lot of fun and the girls were inseparable all night.


And after a nice play, it was time for cake:



As with everything else related to this adjusted birthday party, Hallie also seemed to enjoy her cake a whole lot more. I am sure that Aunt Ellen (Hallie's primary nurse) will attribute it to this being a chocolate cake (Uncle Mark would agree), but I think that she's just more into food than she ever was before. She smeared cake all over herself (we had stripped her and Karina down to their diapers) and even managed to get a bite or two into her mouth.




Notice how nicely Karina holds her fork. Now those are some fine fine motor skills!

Here's a silly video (not the best one I've ever taken, admittedly) of Hallie smearing herself with cake and perhaps getting a bite or two in her mouth:


And, of course, no birthday is complete without some new Sesame DVDs, including the Country one I have been secretly coveting. Thank you, Uncle Mark, Aunt Vanessa, and Karina for enhancing our dining pleasure!