Remembering Olivia Skye

One year ago yesterday, our dear daughter and Hallie's twin sister, Olivia Skye, lost her battle to extreme prematurity.

Yesterday, was, as expected, an extremely emotional day. In spite of her recent difficulties, Hallie is doing so very well, and in some ways, that made yesterday even harder. We cannot help but think "what if?" and wonder what Olivia would have been like, what she would have been capable of doing, how the two girls would have related to one another (especially since Hallie is so very social), and whether she would have looked like Hallie. I always thought that Hallie was the sturdy one and Olivia the delicate one. From the start, she seemed to need more protection than Hallie did (though, after Olivia died, we both became fiercely protective of Hallie---of course we were protective and worried from the very start about Hallie, especially with her lung issues, but for whatever reason, I always worried more about Olivia in those early days and always found myself stationed by her isolette).

Anyway, yesterday, after a morning and afternoon of feeding Hallie and doing all sorts of things (including cleaning up the debris produced by my knocking over a wine rack and sending six bottles toppling; at least it was me who did it and not one of the kids and, yes, I was aware that it---like pretty much everything else in our home right now is a child hazard. I am not submitting myself for any parenting awards ever), I went out and got a lovely peach rose bush and planted it in our back garden. I hope it sets down strong roots and thrives and rivals Nan's rose bush.

Later, Grammy, Aunt Laura and the kids drove up and we all went to Olivia's Grove. We were joined by Aunt Renee (who takes such good care of Hallie and our whole family); Josh, Nancie and Ethan; Sheila; and unexpectedly, our Mark and Karina. We gathered at the grove around 8pm and laid down some flowers, including one from our garden (from Sharon's grandmother's amazing rose bush).





Grammy said a poem and we read the Hebrew prayer for mourning (the "kaddish"). Just as we were finishing, the heaven's opened and it began to pour. We took shelter under a tree in the rain for a while and then had to make a mad dash for our cars (we were soaked, but fortunately Hallie was covered by her rain cover in her stroller). It was extremely symbolic and very fitting, really, that it rained so hard. It was a short, amazing squall that lasted perhaps half an hour, maybe less. And it was Olivia's way of telling us that she misses us, too, and of the heavens and nature expressing what all of us felt in our hearts.

Very briefly, Hallie ran a fever last night. Given everything we've gone through for the past few weeks (months, really), we were worried that we were entering another down cycle. But by this morning it was gone. Pathetically enough, it could have been a computer-induced fever: Hallie shares space on Sharon's lap with her laptop and we really need to get a cooling pad for the latter. In any event, by today Hallie was doing great: she is breathing and eating better than ever and is on a new 'tough love' no middle of the night feeding routine. But this will be a topic for another post.

Meanwhile, I just want to thank everyone for your kind words yesterday: we were all touched that so many people remembered Olivia.

Hibernation Redux

This is a quickie, since none of us have much energy around here right now (except for Hallie, of course, who seems to have no difficulty surviving on 120 calories a day).

Anyway, ever since the day of Hallie's birthday party, it's been back to square one where congestion/vomiting is concerned. Is it teething? a virus? several viruses? crawling? a reflux flare up? allergies? something else entirely? Your guess is as good as mine, and apparently as good as our (very excellent) pediatrician's. In any event, this is not only messy (gotta love cleaning pediasure off of all possible surfaces; we are sending Hallie a bill for all new furniture when she turns 18). It is also disheartening. We had just gotten to a place where we had the evil cooties of vomit/congestion of May that did in our Vegas trip and very nearly drove us insane beaten. Hallie was eating really well--better than ever. She had been taking at least 20 ounces of pediasure a day, two or three meals of baby food a day (very happily), and a few snacks of frozen yogurt or iced pediasure. Things were grand. The kid had put on about a pound in a month. She was back close to the 25th percentile for her adjusted age, which is her personal curve. We were getting to sleep early (like 2am, which is sadly enough early for us).

Now this.

We have been back at the pediatrician's office again for another sick visit, spent five hours at the ER at CHOP getting her dosed with decadron to maybe blow out the congestion (marginally if at all helpful) and have another sick visit on Wednesday. We should get our own waiting room or something.

I wish that someone could help explain why this seems to go in three or four week cycles, where we have two or three bad weeks, followed by one or two good weeks and then back all over again. We're driving ourselves nuts here...

Anyway, just on the off chance that Hallie is picking up every illness known to mankind (or children kind), we're back to hibernating. Which means no more commune. Hallie misses Karina and Ethan, and the feeling is quite mutual. The closest Hallie and Karina have gotten over the past few days is Hallie riding in her excellent new roadster from Aunt Laura, Uncle Bryan and the kids and Karina riding in the Snugli backpack on Vanessa's back. They waved and squealed at each other frantically but no touching was allowed. And they are not the only ones suffering; Sharon and I miss the company and the support, too. Not to mention all of the tasty dinners served up by Josh and Mark/Vanessa.

Well, I'll leave you on that terribly uncheerful note. Except to say that there are no new pics of Hallie because we don't even have energy to upload any pictures.

Hallie's Birthday Bash

It's been a crazy, hectic week and I haven't had much time to post, unfortunately. The week started out with a small birthday party at home for the girls. Then we went into high gear to prepare for Hallie's party this past Sunday. Leave it up to two fatherless mommies to schedule it on Father's Day! We'll be more careful next year, but despite this, we had a very large turnout of about 40 adults and 18 or so kids. In the middle of the week (Wednesday), we took Hallie to Sears for her first professional photos. This process took MUCH longer than anyone expected but we're pretty pleased with the results (at least the electronic/digital ones; we don't pick up the pictures until next week).

Needless to say, by the end of it all, we were quite exhausted. I told Sharon that the next time we plan something like this will be Hallie's Sweet Sixteen, or at the very earliest, her Bat Mitzvah.

Our little rowhouse is way too small to host the number of people we were inviting to Hallie's party, so a few months ago, we began to search for a space away from home for the big first year bash. We very quickly decided on holding the party at Smith Memorial Playground in Fairmount Park. Not only would this provide built in entertainment in the shape of a playhouse for the 0-5 set and a playground for older kids, but the venue also seemed symbolically appropriate---it had been built in 1898 by the Smiths, who had lost their child and who wanted to commemorate him by providing a play space to all of Philly's kids that would always remain free.



Unfortunately, the staff that works at Smith Playground is somewhat inept. Sharon visited the site a couple of months ago to plan the party; when we found out that the only room available was a very small one that holds fewer than ten kids and not nearly the same number of adults, we moved the party from the original date of June 9th to June 17th and reserved a very large outdoor porch instead. We made the reservation for the afternoon slot since neither of us are really morning people by nature and Hallie, alas, takes after both of us. The idea of a party that begins at 10am was hence an anathema to us.

After a few weeks, I asked Sharon whether we should have received paperwork and when we had to pay our deposit, or pay for the rental in full. She wasn't sure what the policies were, so I tracked down the events coordinators there. They assured me that the paperwork had been sent, but promised to resend it just in case. Needless to say, we did not receive that second batch of papers either. We would have to go down there in person to pick them up.

Meanwhile, June was fast approaching and so I ordered the invites so that we'd approximate Emily Post's manners and have them in the mail three weeks in advance of the big birthday bash.

A day or two after ordering them, we took a drive to Fairmount Park and visited the playground in person. The staff person on duty pulled up our files; we were shocked when we found out that we were in the small room at 10am, and that they had re-rented the porch to someone else.

Sharon, who is generally mild mannered about most everything, went ballistic. For her, this signified yet another thing in a long chain of things that went wrong, timing-wise, in Hallie's life. She was ready to call off the whole thing. I talked her down from this, spoke to the staff woman, and she assured me that we could rent out the porch that they do not normally rent out (since it overlooks a construction zone) instead of the enclosed porch on the other side of the house that is far more elegant. I said okay, sent in my check, and thought that all was in order.

Fast forward to Sunday (the party date): when we showed up, we were told that our party was supposed to be at 10am in the small party room. They had never changed the calendar. I was hopping mad, and thankfully I was not the only one there. Luckily, our friend Vanessa (commune member, and presider over both our check in at L&D that fateful night and of the girls' birth four days later) was there to help us out once more. Vanessa has good negotiating skills (ones that I sorely lack) and managed to talk the staff woman into letting us having the porch and relocating a different party to the small room. And the commune, plus Laura Hawley and Ellen, really did a great job of helping us set up and get everything to the venue for the party. We could not have done any of this without their never-ending support.

Hence, all's well that ends well. But I must say that, even though the facility is great and I can't wait to take Hallie there when she can enjoy it more than she could this Sunday, there's no way in the world that I'd ever host another party there. Good thing that Hallie gets no more big parties for the next 15, or at least 11, years!

Anyway, the event came off OK. Our decorations were lovely, the food was good, and most importantly, we enjoyed the company.

Here are a few shots from Hallie's party.

First, we have a nice shot of cousin Hannah greeting Hallie, who was then still wearing her party dress.



Next up, there's Meghan, Hallie's daytime primary. She was amazed at how big Hallie has gotten. Meghan saw Hallie back in May when I brought her into the ICN for an impromptu visit, but our girl has put on at least two pounds and has become even more alert since then.



The party was kind of a mini reunion. We were really happy that so many of the people who took care of Sharon and Hallie and so many of Hallie's micropreemie pals (and their wonderful parents) were able to make it to the party. The nurse who was on duty the night that Sharon went into labor and her partner and little boy came to the party, as did Eric, the neonatologist who was oncall that same night and who was there for the delivery as well. Eric was also around to stabilize Hallie for the PDA ligation that saved Hallie's life. We were thrilled that he called on Monday to wish Hallie a happy first birthday. Two of Hallie's primary nurses, Ellen and Meghan, were there to celebrate their girl's big day, as was Nicole, who took care of her a lot initially. And Katie, one of the respiratory therapists whom Hallie scared the bejeezus out of during her days of frequently extubating herself brought her little girl to the party. Four other little muffins that spent time with us in the ICN were also there with their family (Benjamin; Maya; and Sydney and Payton, 23 weekers who were born a month before our girls).

We got a great group shot of the Pennsylvania Hospital crowd:



Here's Hallie with Eric Mallow and her Bubbe Jean (my mom):


And here's a nice shot of Polly, Rachel, and Maya. Polly's son Benjamin, who also just turned one, was off somewhere with his dad, Chris.



After her training last week, Hallie knew exactly want to do with the cake.



Good thing we changed her out of her fancy birthday dress!

And here is a nice shot of Hallie and her mommies. I have no idea what my hair is doing, but maybe Sharon can find a way of airbrushing it into place.



After everyone had left the party and we cleaned up, we took the balloons down to a clearing in the park and released a dozen of the latex balloons (safely, so as not to harm the environment and wildlife) for Olivia. Hallie held and kissed each one as we let them go flying up to her sister:









It was an emotional moment for us, and of course we had Vanessa there to share it with us. We'll also be commemorating Olivia on the 28th of June at Pastorius Park.

Afterwards, we got home and were too exhausted to open Hallie's presents. So our living room looks like it might at Christmas time, minus the tree and the menorah and plus some air conditioning so that we don't boil in our hot and humid heatwave. So stay posted for some great shots of Hallie eating paper. I think that she thinks that the yellow paper tastes best...

The Big One

Today Hallie turned one.

She began her celebration with a lovely breakfast of chicken and vegetable stew mixed with butter and pear/pineapple medley (please don't ask...I am sure that, when she's older and she reads this blog she's going to be horrified by the food combos to which we subjected her). She followed this up with a session of practicing "pull to stand" that ended with a quick dive off of the couch. Happily, I caught her on the first bounce. Unhappily, this involved a small amount of crying that resulted from shock, breaking her fall with her arms, and a short skid along the carpet. No one was hurt, but I made a mental note to practice my own dive and rescue techniques so that I'd be a quicker responder to such events which, alas, will probably become ever more frequent in the upcoming days.

This afternoon, Hallie was honored by a visit from Aunt Ellen, who is Hallie's first friend. Ellen is the first nurse that we all got to meet in the Labor and Delivery suite to which Sharon was rushed (careening into walls, doors, and us) a year and a day ago today. Ellen's prediction when she said, "Ladies, we are going to get to know each very well this summer" was totally on target. Anyway, Hallie shares all of her important milestones with Ellen, and today was no exception.

Here's Hallie ripping into her gifts from Ellen. She found the paper intensely exciting and apparently quite flavorful.



Maybe her high fiber diet is the reason we are getting to change so many interesting diapers these days?

Aunt Ellen and Hallie had a very long, very serious birthday talk, to which Hallie responded with many high-pitched "ays" and "ahs."



Then we all went off to More Than Just Ice Cream for lunch. Hallie was very well behaved and crunched away on her Trader Joes veggie sticks and had some bottle while we partook in salads and such, saving lots of room for the purpose of this visit: long ago, back when Hallie weighed considerably less than two pounds, Ellen had promised that she would take Hallie out for chocolate ice cream on her first birthday.

Here's Hallie digging into her very first sundae:



Truth be told, right now we think that Hallie enjoys fruit flavors above everything else, and to our horror, she liked the low fat peach frozen yogurt the best. But she got to sample lots of different flavors--chocolate marshmallow, mint chip, cinnamon bun, and coffee and liked all but the last of the ice creams.

This little exercise of feeding Hallie did, however, involve the use of many spoons. This was not because our girl is a stickler for avoiding double dipping but because she takes very seriously the fact that these spoons are of the "take and toss" variety. She is especially fond of the "toss" bit and this is what the floor looked like after our little adventure:



Needless to say, we tipped well.

Later on today, we had dinner with a subset of the commune. Ethan, unfortunately, was a bit under the weather so he and Josh could not attend, so we got together with Mark, Vanessa, and Karina for a short meal and birthday cake. Karina and Hallie had a blast hanging out with one another.



Karina was very emotional about her best friend turning one. At one point, she reached over and gave Hallie a huge hug and kiss. Hallie was a bit stunned but took the headlock Karina placed on her in stride:



Like Ellen, Karina also gave our girl a birthday talk:



This was followed by a long 'girls only' conversation that we found absolutely hilarious.



Then we brought out the cake, which was dedicated to both Hallie and Olivia:



Hallie helped us blow out the candle:



Then she got down and dirty with the cake, which not only was delicious but has secret moisturizing capacities:



A good time was had by all and Hallie especially enjoyed her post-cake, pre-bedtime bath.

The First Birthday Has Arrived

It is officially one year (and almost two hours) since Hallie Rose's and Olivia Skye's birth.

We are very much filled with emotion tonight (and have been all month, and will be for the rest of June). A year ago tonight, we were just embarking on the NICU rollercoaster. We had only the vaguest idea what this meant. About a half hour from now, a year ago, Sharon and I, accompanied by her family (who drove back from NJ to Philly at midnight when it became clear that delivery was imminent) went down from Labor and Delivery, where we had lived for not quite a week, to the ICN at Pennsylvania Hospital to see our daughters.

Tonight, we brought Hallie back to the ICN for a visit. It was a bittersweet occasion. One of Hallie's primaries, Corinne, was in charge tonight, just as she had been a year ago tonight. She had been thinking about us and on the verge of writing us an email when we walked in the door.

The first person to greet us this evening was David, surprisingly one of the very very few nurses who never had Hallie as a patient. David is hilarious and we always enjoyed his presence when we spent our many, many nights holed up in East and South last year. Anyway, David was thrilled to see Hallie: while he had never taken care of her officially, he did have the dubious pleasure of being the one to administer chest compressions to her on her first-month birthday last year. He is extremely glad to have never had to repeat this experience and to see how big and strong she is today.

He was not the only one who thought that Hallie was getting to be a big girl. This is not only because most of the ICN folks remember her back when she and Olivia were the size of 20 ounce coke bottles and fit into the palms of their hands. Rather, Hallie really has put on a bunch of weight since last week....as of Thursday, she is 7125 grams, or 15 lbs. 11.5 ounces, which is a more than 4 ounce gain from the previous week. She is also eating like a champ and has finished a record FOUR whole baby food jars in the past couple of days. Plus, she had a few veggie sticks from Trader Joe's (a tastier version of the melt in your mouth gerber snacks, we think), and she did nicely with them. Maybe some day we'll actually work through the stash of baby food that we amassed months ago when we were desperately trying to find something that Hallie would like to eat. Hallie also has acquired quite a bit more leg and arm chub and carrying her around is actually becoming an experience that leads to sore muscles.

In any event, here's a series of photos of Hallie with Katie (a respiratory therapist who had the pleasure (NOT!) of intubating and reintubating Hallie many times, and who always had a soft spot for our little girl):



We also saw Nicole, who is going to get to share that birthday cake with our kiddo at long last this coming Sunday, who loved up our little girl:





And Hallie also got to spend some quality time in the arms Dr. June Wallison, one of the neonatologists:




If Hallie looks blurry in some of these photos, it is because our image stabilization cannot compensate for our bundle of joy, who is a body in perpetual motion. This may detract from our photography (and our sleep), but all in all, we're pretty happy with how much joy and energy courses through Hallie Rose's body.

The rest of the week will be spent in various birthday preparations. We will have dinner with our commune tomorrow night in honor of our girls' birth, and will spend Sunday celebrating Hallie's first birthday. Most of the past weekend was devoted to preparations for this event, and I suspect that the next few days will be as well.

Throughout all of this, we are still searching for the right way to memorialize Olivia (can there be a right way to do this? We are not the only ones who have experienced this searing pain and loss, and I think that all of us parents of surviving twins, and all of us who have ever lost a baby fumble through this, hoping to find something appropriate to say or do, but in the end, nothing really makes us feel better or makes something that is so wrong feel right. Anyway, we will do the best we can and hope that someday we can figure out a way of coming to peace with things and, most importantly, a way of explaining to Hallie about her beginnings and about her sister and why her birth is a momentous and joyous occasion for us but also one that is inevitably bittersweet.

One Year Ago...

One year ago this past evening, around 10pm, right after finishing dinner with Mark, Vanessa, Josh, Nancie, Karina, and Ethan, we headed to Pennsylvania Hospital. Sharon hadn't been feeling at all well for a couple of days and had a miserable lower back ache and a bunch of other somewhat worrisome symptoms.

After parking Vanessa's car and heading up to Labor and Delivery's Emergency Room, we remarked (quite foolishly) that we'd be home in an hour.

Little did we know that for the next 100 or so hours, everyone in our circle of friends and family would be praying--not least of all me, who would not and could not spend the night alone with Sharon in L&D for fear that delivery was imminent and that I wouldn't be able to handle it--for Sharon to hold onto the babies and for the babies to grow, grow, grow. And that for the next almost 3 weeks we'd be living moment to moment praying for PDAs to close, infections to clear, IVHs to resolve and for both of them to defy the rule of the NICU rollercoaster by doing better than anyone ever expected a 23 weeker to do. And that for the months after that, we'd be staging vigils by Hallie's isolette, praying for her lungs to recover, for her to breathe on her own, for her not to need steroids, for her to be able to get off the vent with just some steroids, for her never to need chest compressions ever again, etc etc.

In other words, since this time last year, we've been living in the trenches and I think that both of us are so shell shocked and have such post traumatic stress disorder that we have no idea about how to live anymore. We're always in crisis mode, and when there is no crisis, we tend to invent one. Crisis is a way of life. How sad.

This is obviously an emotional time of the year for us and I imagine it always will be. As much as we are thrilled that Hallie's birthday is so soon approaching, there is this quite understandable, lingering bittersweet taste in our mouths. Hallie's birthday was not the joyous and momentous occasion that we had both imagined. And Hallie's birthday will always be Olivia's birthday and, while we are both grateful to have had Olivia in our lives, we had her with us for far too short of a period of time. While watching Hallie grow and become more of a charming and feisty little person is in itself a wonderful experience, it too is tinged with sadness because it reminds us how we never got the chance to do that with Olivia Skye.

Hallie is blissfully unaware of all of this, at least as far as we can tell. We are not sure how or when we will tell her the story of her arrival or share with her our feelings of love and sorrow about her sister, but for the meantime, while we talk to her about Olivia, we are pretty sure that she has no idea what we are saying. She is too busy doing her thing, which involves a lot of work on motor skills (spoken as a parent of a child in Early Intervention).

Here's a few shots of Hallie from yesterday.

Her biggest fascination, in terms of her physical environment, right now is exploring hallways, doorways, and other places of entrance and egress:




While we are all for exploration, the baby gates are now bought and will be up tomorrow!

Hallie has also been busy pulling herself up in her crib. I came in to find her like this yesterday:



And last evening, she had a great time grooving to the sound of the Mummers (a Philly tradition: they are groups of men in string bands who sport flamboyant costumes and who organize elaborately choreographed dances that they present on New Years Day in a major parade. They practice all year long for this in halls and warehouses in South Philly, which is where we live). A local park (three blocks away) has organized a series of Tuesday night events for kids, and we brought Hallie, who had a wonderful time. She enjoyed the music, the dancing, and the company of lots of other kids:




And, finally, Hallie enjoyed sporting her new toothy grin. We think that her smile is the most beautiful smile in the whole world, and so I'll close this post with this image:

Yo, Baby!

Hallie is a very busy baby these days; she is obviously feeling much better (even though she is teething, has a cold, a runny nose, was running a fever and has the runs....sorry if this is too much information, but the thing that I am wondering is what in the world she'd be like if she were a hundred percent well).

Anyway, yesterday we started our day off with Hallie showing me her lovely new teeth (bottom front and center). They are doubling in size every day, going from tiny but sharp nubbins to cute little baby sized mounds (that she hones to a razor edge on diet coke and iced tea cans and bottles):



After playing for a while with her toys in the living room, we relocated to Hallie's bedroom where she gave us a very good lesson in why babyproofing needs to happen NOW:





Hallie can now get anywhere and do most everything. In addition to having access to the stuff we store on her soon-to-be-former changing table, she loves to try to pull herself up on burp cloths, plastic liners of diaper pails, and her flexible elephant hamper. I think she'll figure out pretty soon that the couch is a better option, but I hate to think about the bumps and bruises she's going to get learning those lessons.

Happily, there were no bumps and bruises yesterday; just one smiling baby.

In the afternoon, she went out to play in the waterpark the commune set up in front of our house and Mark, Vanessa, and Karina's:



And in the evening, we all went over to Mark and Vanessa's to have dinner (more on this later). Hallie had a ton of fun playing with Benjamin and Adam (two of our neighbors', Barbara and Chris', three boys) and Karina and all of Karina's toys. She especially enjoyed walking behind Karina's Little Tykes ride on:




And if all of that wasn't enough, here's the really important news: Hallie had a banner eating day. For the first time in a long time, she took in something approximating her caloric requirements (around 700 calories a day, at least). But significantly, less of it was administered in the form of 'dream fed' (essentially feeding her in her sleep) bottles and more of it happened in the daytime hours when she was awake and actively seeking her bottle. And, even more significant, not all of those calories were pediasure, either. She ate, drum roll please, a WHOLE container of Yo Baby! yogurt (frozen, and supercharged with added Carnation Instant Breakfast) and she did so happily. We froze the yogurt because Hallie loves frozen food and she kept going after it like a champ and demonstrated none of her typical gag reflex action. We are hoping that this starts a trend around here, but even if it doesn't, we had a very good eating day (and unsurprisingly, the mommies' stress level was far reduced) yesterday.

So, for your viewing pleasure, I present the final moments of Hallie's second frozen yogurt meal last night:

Yo Baby/Food, Glorious Food!

And, for the record, she did keep it all down! Sharon was right about this one and I was being too overly cautious when I thought that she needed to stop feeding Hallie before the container was absolutely empty.