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Tuesday, January 2, 2007

Happy New Year and Welcome to Hallie's Blog

It's the beginning of the New Year and time to review 2006.

2006 was a whirlwind year for us. Both very good, and very bad, and very, very emotional at all junctures. It will be a year that we can never forget.

At the beginning of the year, Sharon and I were preparing for our first foray into the wild world of IVF. After 6 IUI's and 6 BFNs, we decided to avail ourselves of yet more reproductive technology. After all, it isn't for nothing that her firm is incorporated in New Jersey. As some of you know (and now the rest of you will know), the state of NJ has a very good set of policies for dealing with infertility: the state mandates that all companies that have more than 100 employees need to cover fertility treatment (in contrast, the State of Pennsylvania, where we reside, mandates nada). So her company has excellent coverage, and after blowing through our stash of Donor # 1, we decided that it would both be prudent and more cost effective to bring out the big guns. So, after prepping (involving a lot of shots per night), we were ready to roll during the first week of January. We retrieved (or more to the point, the doctor retrieved) 13 eggs, and a few days later, they put back the best three fertiized zygotes. Sharon began to drink lots of pineapple juice to help the eggies stick, and about a week later, after the onset of the Great Picholine Craving, we suspected that she was pregnant. We got the official news on the 24th--my fortieth birthday. We were finally pregnant. With twins. We expected that, at some point in September (the due date was 3 October), we'd be on the crazy roller coaster of parenthood.

We did get a rollercoaster, just not the one we planned.

Things progressed fairly well through the spring. Sharon had massive morning sickness, but this had begun to abate by early spring. And Bailey, our dog, had some scary health development just after that--in April, our Shar-pei with Shar=pei fever syndrome that was slowly taking her life, took a big turn for the worse, and she was diagnosed with a huge (grapefruit sized) liver tumor. I was leaving for St. Petersburg Russia to do my final research stint for a while a few weeks later and considered cancelling but didn't after we basically got things under temporary control. Sharon spent a couple of weeks alone with Boo (Bailey's nickname) and I went off to do work. I got back, and Sharon was really showing. This was the second to last week in May. We decided that, between the pregnancy and Bailey's health, we'd cancel our trip to LA for our friend Elisabeth's wedding and instead take Bailey to my brother's house in upstate New York for a final romp in the country. This was memorial day weekend. We got back, and Sharon really began to swell. We were slated to go in to the OB for our last monthly appointment (thenceforth bi weekly) on the 8th of June. But before that could happen...

..the 6th of June happened. Sharon got home from work and had an aching back. She seemed 'off' to me, and had since the prior weekend, when I had asked her if we thought she might be having contractions. The babies were moving more and she was carrying big and low. On Tuesday night, we ate dinner at our good friend Mark and Vanessa's (next door---Mark was just back from his own hospital adventure, having burned himself pretty badly the previous Friday night). We all convinced Sharon to call the OB, and she did, and they told us to come in to the hospital labor emergency division immediately just to be sure nothign serious was amiss.

We figured we would be gone for 1 hour. We didn't really leave the hospital for 125 days.

When we got to the hospital, the docs checked Sharon out and things really started rolling from there. She was 50% effaced and 4 centimeters dilated. She was having multiple contractions a minute. I am not sure how many.

She was 23 weeks 0 days pregnant.

This is before the point of viability. By a week.

They stabilized her, got her to an L and D room, called the NICU and we had a crash coruse in what we might expect if Sharon gave birth than night: immature lungs, immature skin, immature everything. High risk of death (50%). High risk of CP. High risk of high risk. Very scary stuff.

We made it through the night and another neonatal doc came to do an ultrasound. Both girls were running big and fortunately both girls were girls (there is a syndrome that NICU docs and nurses called the "wimpy white male" syndrome. Apparently, girls, and particularly African American girls, have the best survival rates where prematurity is concerned. Boys don't do as well. No one can really say why). Sharon got a Magnesium drip, terbutilene to stop her contractions, and had her head lower than her torso. The goal was to keep the kids inside her for as long as possible.

This ended up being four and a half days. Enough to improve our odds by about 10%. Enough to get some steroids in her system to help mature the babies' lungs.

Saturday the 10th, Sharon ate for the first time in days. She ended up feeling pretty bad by the afternoon, and her contractions were returning now that she was off the Mag drip (she was having trouble breathing, even with supplemental oxygen. Sharon would have suffered through this had she been able to, and probably began to put herself in danger by refusing to let them stop the magnesium. But then, when fluid began to build up in her lungs, the mag drip had to go).

Around about midnight, she felt like hard labor had begun. The damned monitor, however, did not register these hard contractions. We had to twist the arm of the resident to do an internal. She was now 9 centimeters dilated and 90% effaced. The babies were coming, and they were coming soon.

We careened down the hall at breakneck speed. Fortunately, Vanessa was still with us (I had refused to spend the night alone with Sharon---and of course wasn't about to leave her side---since this saga began and so our friends Laura, Sheila, and Vanessa took turns, and Renee took over Bailey's care). Vanessa was the only one of the three of us who had actually been through a birthing class. We hit walls, speed bumps, each other, as we scrambled to the closest delivery room. This was not the right room--they usually use the C-section room for NICU pre term births, but this was too far away. The NICU hadn't been notified yet. Code Purples began to ring out. Sharon's water broke in the hall. All hell had broken loose more generally. I was scared shitless. This pales in comparison to what Sharon must have been feeling.

Ten minutes later, at 12:38am, Hallie Rose (Baby A) was born. Two minutes after her, at 12:40, Olivia Skye (Baby B) came out---even though we both wanted her to stay in longer. They were each tiny: 1 lb 5 ounces (590 and 580 grams apiece). Hallie came out crying, but Livvie did not. They intubated Hallie and resuscitated Livvie and got them down to the NICU (henceforth, ICN--Intensive Care Nursery). There was lots of noise, lots of people, lots of crying (on our part). We were shaking Sharon's mom and sister were on their way to Philly from the Jersey shore. We'd not be able to see the girls for at least an hour.

Three am: the girls are stabilized---intubated, under saran wrap, etc.--and we see our little, fragile girls for the first time. They look like fetuses:



We named the girls--Hallie Rose in memory of both of our fathers (mine being Harold and Sharon's being Harry) and my grandmother (Rose). Olivia Skye in memory of Sharon's grandmother Sylvia and, peripherally, somehow, in honor of Aunt Laura (Sharon's sister and my fabulous sister-in-law).

They were doing as well as one could expect, but this was not terribly well. Time would tell.

First there was the (relative) honeymoon. Both girls had infections, but neither had serious brain bleeds. Both had crappy lungs and needed a lot of support. But they held their own.

Then the honeymoon was over. They had huge holes in their hearts (PDAs) and these were refusing to close medically (with indocin). Surgery had to wait until their infections had cleared. We were in a race against the clock. Livvie's lungs were doing okay, or as well as could be expected, but Hallie's were getting worse by the hour. Her right lung had collapsed and she needed to be placed on the oscillator. Livvie did well on the conventional vent for a few days, but then she too had to be placed on the oscillator. The oscillator is a ventilator that provides up to 900 breaths a minute by vibrating the baby and does the important work of getting carbon dioxide out of the baby's system--it essentially performs all aspects of the gas exchange that is involved in breathing for you. Neither of us understood the fine art of blood gases then. Neither of us understood much about anything then. I had not yet embarked on my neonatology crash course. Things were happening too quickly and our emotions were too raw to engage in clinical research (via google). Looking back on things, I think that, had we understood what was really going on in those first few moments, we'd have been even more frightened than we were. Which is saying something, because we were really, really scared.

By the end of the second week, both girls took a turn for the worse. Olivia was more fragile than Hallie, but both were in pretty bad shape. Often, they would take turns having one crisis or another. We needed to get those holes closed. Friday June 23rd, Olivia was cleared for surgery. But this couldn't happen until Monday. Meanwhile, her condition deteriorated seriously on the 25th. All night long on the 25th, doctors, nurses, and PAs surrounded her isolette trying to stabilize her. By the morning of the 26th, she had sustained prolonged hypoxia. She was stabilized a little by her nurses on the 26th, but her oxygenation was perilously low. Hallie was also in pretty bad shape: she kept dipping down in terms of her oxygen saturation, but bringing herself out of it. In a heroic manner, her docs and nurses pavulized her (basically, this is a drug-induced paralysis) to stabilize her for surgery on Tuesday. No one slept on Monday night--not the doctors or nurses who were by her side the entire time, not Sharon, not me, not Aunt Laura, and not Grammy. We took over the entire nursery and paced back and forth and collapsed in the uncomfortable chairs and prayed hard to whatever deities or spirits we could invoke. Hallie managed to get stabilize and even showed off a bit when the CHOP surgical team came in early the next morning. One of the surgeons asked, when she saw that Hallie was satting (oxygen saturation) in the low 90s, 'does she get any higher than this?' Hallie responded by satting 98. This is indicative of Hallie's spirit more generally and I believe that this is why she survived those early days and is still with us. The surgery was brief: start to finish under an hour. It involves inserting a titanium clamp into the heart to seal off the hole via a small incision through her back. The second they clamped off the hole, her blood pressure became normal and blood circulated the way that it should. The surgeons were amazed. She came through the surgery brilliantly. Livvie, meanwhile, started to swell up and the pavulon did not help her in the way that it had helped her sister.

On Wednesday, while Hallie recovered from surgery, Olivia's condition continued to get worse. We lost our little Baby B later that night. She was surrounded by 20 friends and family members and all the love in the world. We will miss her forever, and the missing gets worse every single day. With the help of our generous friends and family and the great folks who run Pastorius Park in Chestnut Hill, PA, we've planted a grove in her memory. We will also remember Bailey there (she passed two weeks before Hallie came home). It's something---and somewhere to bring Hallie--but it's not the outcome we wanted. Far from it. I cannot even begin to express the pain I feel as I type this.

Hallie recovered from surgery. Things were touch and go -- and continued to be for quite some time. She spent a lot of time on the oscillator and ventilator (9.5 weeks total), a week on C-PAP, and had some scares where she pulled out her own tube, stopped breathing (once needing chest compressions--that happened on her one month birthday and was one of the least fun nights we spent at the hospital), and off and on difficulties with her bottle. But 121 days after she was born Hallie did make it home--on oxygen and a monitor--but home at last.

She's now a day shy of three months corrected and is nearly 10 times her birth weight -- as of Friday, she was a cool 5 kilos, or 11 pounds for those of you who are metrically challenged. She is smiling, pulling to sit, basically eating (though she has a reflux issue that is keeping Dreft detergent's parent company in business) and is the light of our life and apple of our eyes and all sorts of other fine cliches. She is teething, pooping, farting, and acting like a 'regular baby.' She enjoys her toys, loves her moms and has the hugest fan club you can imagine.

So this blog will be about Hallie--and secondarily about her moms. I've been meaning to do this for a while, and I will try to post all of my updates (the ones I sent to fan club members) detailing the early days with Hallie and Livvie and Hallie's ongoing milestones in the ICN. And I welcome you to visit, to comment, and to take heart in the journey that we are sharing with our daughter. She is the best thing that ever happened to us and the most precious part of our life.

In closing of this very first post, I will post two pictures: Hallie at 18 hours, and Hallie as of yesterday. Quite a difference:



3 comments:

Kim said...

What a whirlwind this year has been for you all! Congratulations on the birth of your precious daughters, and I am so sorry for the loss of Livvie. The grove sounds like a wonderful way to honor the memory of such a little fighter. And Hallie looks wonderful! I hope that 2007 is full of fun firsts and happy times for your family!

sarahfurlough said...

What a little miracle Hallie is. I am so sorry for the loss of Livvie, hopefully she's playing with my little Logan up in Heaven.

I wish you only happy tears in 2007!

abby said...

I think that Livvie is up in heaven with Logan and that they are both looking down on us and helping us through this process. Thanks, Sarah, and may your new year also be filled with joy and wonderment. We all deserve it, especially our little ones.

Abby