Back Story

It recently occurred to me that some of you may have no idea what happened prior to Chloe's arrival. That's usually the first question people ask when they find out we have a daughter in the NICU. So here's our story...

April 27, 2005: We welcome our first daughter, Solana Marie, into this world. I take exactly 6 weeks off work and then head back to my full-time accounting job. For the next three and a half years I pretty much get to see Solana for 2-3 hours a day plus weekends. There's no way we can have another baby with this schedule but we're financially committed and I can't stop working.
March 2008: We meet our new nephew and I'm head over heels in love with him. We absolutely MUST have another baby. We decide we'll find a way to make it work.
June 2008: We decide we want to try for a boy. I read "How to choose the sex of your baby," go off birth control in order to start tracking my cycle, and start taking prenatal vitamins.
November 2008: An opportunity to move to Ohio. I won't have to work anymore!
January 2009: We move to Ohio.
February 2009: We're freaked out at the thought of having a boy and decide to leave it up to God. All the cycle tracking I've been doing gets tossed out the window and we stop using backup contraception.
Mid-March: I'm pregnant but don't know it yet.
April 1: We leave for a resort week in Mexico. Pregnancy test is negative. Woohoo! I can drink!
April 4: Hmm. I thought I should have started my period by now... Could it be the travel? Yeah, it must be the travel.
April 5: Um...still not here..and..why is my chest sore? Fortunately, this is a family trip so I haven't had much to drink. But I think I won't have anymore kaluah and creams...
April 8: We return home very late at night and I immediately pass out in bed. 5am I wake up and take another pregnancy test. Pregnant!!
April/May: I read a book by Ina Mae, a famous midwife, and am really excited about my decision to have a natural childbirth experience. This time there will be no yucky petocin or epidural for me! I'm jogging, hiking, doing yoga, and feeling great!

May 27: We go in for an ultrasound because of bleeding the previous night. Dave is chatting with Solana when the technician starts the ultrasound.
Technician: And there are two in there.
Me: What?
Technician: You're having twins.
Me: HA! (uncomfortable) Uh, you're kidding, right?
Technician: No, I wouldn't joke about something like that.
I look at Dave.
Dave: What?
Me: Babe! (for some reason, this comes out like a whiney plea) Twins!

We're in total shock. After the ultrasound is over we sit around for what seems like forever before the doctor comes in. She talks about some scary disease that is only 10% likely for single placenta twin pregnancies and we disregard it since it's not going to happen to us. We have more important things to worry about like, "Oh my gosh we're having twins!" Unfortunately, I can't have them in the uber-cool birthing center for the kick-butt moms (like me) who are going to go natural. They don't allow "high risk" births in there. Pssssht. High risk my bootie! I'm healthy as a horse. I'm pretty sure I still want to go natural but won't commit just yet. We need to go home and freak out a bit more before I can make any committments. We spend the next couple of weeks alternating between excitement and fear. It took us three years to decide we were up for the challenge of another baby and now we're having twins. Dave and I looked at eachother many times and say, "We're having twins!" Then we spend another month getting ready. We're in the midst of house hunting in Ohio and change gears on neighborhoods and criteria. We definitely need a bigger house and yard now. Plus, my Outback will no longer fit the bill for our two carseat/one booster family. We trade in my cherished Outback and Dave's Legacy for a minivan. (I quickly decide I love my minivan, by the way.)

July 9 (18weeks)
It's finally time for our next ultrasound! Exciting news! We're having girls! Bad news. We're diagnosed with Twin to Twin Transfusion Syndrome (TTTS). The girls are sharing one placenta and there are abnormal blood vessels connecting the girls through the placenta. It's only stage 1. The doctor recommends bed rest and protein drinks. We're all over it. We name the girls. Leila is our little donor and Chloe is the recipient.

July 17 (19 weeks)
Our next ultrasound is, unfortunately, late on a Friday afternoon. We've progressed to Stage 3. The doctor thinks we need laser surgery because the babies are in danger but there's nothing we can do until Monday. The next two and a half days are the longest of my life. I pretty much cried the entire weekend. My mom arrived from Texas on Saturday to help us take care of Solana and we leave Sunday night for Columbus.

July 20 (20 weeks)
We meet with the surgeon on Monday and have the laser surgery on Tuesday. During the surgery I hear lots of cursing from the surgeon of the "Shit Shit Shit" brand and am completely freaked out. As it turns out, Chloe was exceptionally active during surgery (we're not surprised as this is already typical of her) and kept getting in the way of the laser and camera. Otherwise, he says the surgery went well and he thinks he blasted away all the connections between the girls. The girls survive the night after surgery and we're thrilled because we're told this is when we're most likely to lose a baby. The following week the girls still look good and Dave finally feels them kicking! We're feeling good, like the TTTS was cured and I just need to remain on bedrest because of my damaged membranes.

August 3&6 (22 weeks)
Our second post-op visit does not look good. On Monday the doctor sees TAPS, which means the surgery didn't completely work. Leila shows signs of anemia. He wants us back in three days for another checkup and possible blood transfusion. On Thursday we return to Columbus and end up getting the blood transfusion for Leila. There's another family in the hospital that same day that had laser surgery and four blood transfusions. The mom carried the babies until week 32 and they're doing well. I'm feeling confident that the girls will be fine.

August 11 (23 weeks)
We visit my high risk OB in Dayton, since the Columbus surgeon is out of the office. He is sorry to tell us that Leila has passed. I'm in complete shock. I've been feeling kicking all weekend and am sure they're both fine! How could this be? I think I'll remember forever the moment the doctor tells me. It's weird how that moment is burned in my mind. That and the moment that we tell Solana and the heart-wrenching sound of her sobbing in my arms at the loss of her sister. Her 4 year-old cries, "But I don't WANT my sister to grow wings and fly with the angels! I want TWO baby sisters" echoes my heart. I am to remain on bedrest but not as strict since TTTS is over. I realize how easy it could be to sink into a depression after a loss but find comfort in the love of my family and responsibility in my duty to them.

August 18 (24 weeks)
Chloe looks good but the doctor is concerned about my damaged membranes. They give me a steroid shot for Chloe's lungs just in case. Dave repeats the shot the next day. We discuss my activity level. Walking around the house is fine. I just shouldn't do anything strenuous like rearranging furniture and "nesting" for Chloe's arrival.

August 22 (24 weeks 5 days)
Membranes rupture. You know the rest.

Day 76 - Still Moving Slowly

We're still decreasing ventillator support - slowly but surely. The machine is now giving her only 18 breaths per minute. She has to do the rest.

Her weight is 2lb 14oz.

She's getting 2 extra calories per ounce from Elocare.

Not much else is changed - except me into my pajamas. I'm pooped and going to bed! Goodnight all!

Day 74 - Slow and Steady Wins the Race

OK, well maybe she won't be winning any races any time soon. But I'm hoping that slow and steady will get her out the door of the NICU!

Chloe's respirator support is still being reduced a tiny bit each day. She had a little bit of a rough night last night. She seemed a bit aggitated while I held her and her nurse said it continued through the night. They gave her some Tylenol but she still had a couple of desat's/Brady's (when her oxygen saturation and heart rate both drop to unacceptable levels) so they increased her breaths per minute by two and, after a good blood gas this morning, decreased it back to 22.

The nurse also mentioned that her body might just need some time to get used to the decreased breathing support. Premies often 'forget' to breathe, especially if they're sleeping or super comfortable. Chloe's body has gotten accustomed to the vent doing the work for it. Her body now needs to start sensing for itself that her CO2 levels are high and that she needs to breathe and this might take a bit of time for her.

She's not gaining huge amounts of weight but is going up a tiny bit. She was at 1300 grams last Tuesday (right before they stopped her feeds) and then it went back down to 1240. She's now back up to 1300. That's slower weight gain than we'd like but I'm hoping we'll start seeing some real weight gain here soon. I've read some other blogs where babies coast for a while at the same weight then have a sudden big weight gain. They also increased her Elocare fortifier to 2 calories. Between that and my hindmilk she should be getting some pretty plumped up milk. Let's pray that it helps!

Halloween Costumes

The nurses had a little bit of halloween fun at Chloe's expense. I know I know. I'm a total halloween grinch. But just because I'm a party pooper doesn't mean I'm going to ruin everyone else's fun. Here's my little baby doll all dressed up for trick or treating. Click on the pictures to get a better look.















Fairy Princess Chloe.
She looks slightly put out in this picture. Maybe she's not into all this princess fairy stuff quite yet... ;-)















Gardener Chloe
I personally think she prefers this costume. Her expression is much more serene. She's probably imagining future gardening alongside her Mommy.

Day 72 - New Schedule/New Fortifier

Yesterday was Chloe's fourth day on full feeds of Mommy Brand Premium Milk. I expected them to start her on fortifier, since she'd already done 3 days on full feeds, but the doctor decided to give her an extra day. Today they are adding one calorie of Elocare. This is a more elemental/partially digested form of fortifier that should be easier on Chloe's bowels. I kind of drilled the NP who gave me this news because I'd had "Calcium," "Minerals," "Rickets," "OsteoSomething" drilled into my head for the last few days (and by four different people) and finally drank the KoolAid. OK! I'm sufficiently scared enough to approve Human Milk Fortifier. Then they say, "Oh. Nevermind. We'll just do Elocare even though we told you it doesn't have enough calcium and minerals for Chloe." Deep Breath....Please....Explain. So, she explained to me that, for a baby with an intestinal rupture history, and problems with fortifier, they want to try something easier on her first and then they'll proabably try the HM fortifier later on. For now we just want her to grow. Hmmm. Sounds awfully familiar. Did you guys just all agree to gang up on me until I approve the fortifier just to see if you could do it? And then decide not to use it just to screw with me? Or did it just occur to you that Chloe had an intestinal rupture because, after my squeaky wheel impression, you took a closer look at Chloe's chart? Either way, I'm happy now. She's getting an easier fortifier and will hopefully start packing on the pounds and packing on that new lung tissue!

Her blood gases have been acceptable enough that they've also tweaked her breaths per minute two days in a row. They're tweaking very very slowly (whisper voice) "in hopes that she doesn't notice." Hehe. These are her first changes in the right direction since they stopped the steroids. Let's hope we can keep sneaking vent changes with success...

In other Hendrickson news: Dave and I have constructed a plan so that I'm not constantly running around like a maniac and simultaneously getting nothing done. Keep in mind that this is a first draft and I'm pretty sure the blanks will be filled in with lots of cool fun stuff. For example, Solana and I will be baking pumpkin pies from our little sugar pumpkins this afternoon. Anyway, we're such nerds. Check out my chart and please feel free to comment on how dorky we are.
















By the way, if you click on it (just like pictures) you can actually see the detail. I just told my dad that and he cracked up when he saw the big version ;-)

Tomorrow I promise a picture of Chloe dressed up for halloween! The nurses did it and I keep forgetting to bring the picture home.

Finally, thanks for all your support during my rough week. And thank you for continuing to pray for my baby girl.

Day 70 - The Foot is Down

Today was a pretty good day for Chloe despite her yucky bad start. After a night of freaking out about the fact that she's been intibated for so long, and all the damage that's doing to her throat, she starts the morning out by (of course) self extibating! Exactly what I wanted to hear this morning. Fortunately, they got her tube back in easily (or so they say). Every time that thing goes in and out I get so nervous of the damage it's doing. Patience, Cynthia.

The rest of her day was fine, though, thank God. Her oxygen settings are going down ever so slowly. They're hovering around 30-35 right now. She still desat's and needs suctioning every once in a while but it makes sense that the O2 levels in her body drop when she has phlem blocking her breathing tube. (Just imagine breathing through a straw and then getting a wad of phlem stuck in it. How much would that suck?) I spoke with the nurse practitioner today who also reassured me that she recently had babies come off respirators after 89 and 112 days and both did just fine. We just need Chloe to grow and repair some of that damaged lung tissue.

Speaking of grow - the weekend doctor decided to give Chloe 1 calorie of fortifier today. She just got back up to full feeds on Friday. Dave and I put a quick stop to that and I had a long conversation with the nurse practitioner this afternoon. She stressed again the importance of calcium and minerals that my milk just can't provide and doesn't think that we're at the point to give up on the human milk fortifier just yet. I can accept that but also want to go a little easier on Chloe. I said I wanted 3 days beetween any changes and she agreed to that. Chloe will get 1 calorie of fortifier tomorrow and, as long as she can tolerate that, shouldn't have another change until Thursday.

Kangaroo time is going just swimmingly, too. Chloe usually has wide eyes for about the first 5-10 minutes and looks all around while I talk to her and then she konks out for the next hour and a half or so. I actually held her for two hours yesterday! Such a treat! I swear, if I didn't have Dave and Solana at home to love on (and they need it, too) I could sit there all day with her. It feels just wonderful to have her tiny little body snuggled up against me. Today she was sucking on her tubes. She really seems to like to suck. I have a feeling that her pacifier will quickly become her best friend as soon as they get those tubes out of her mouth. And maybe, just maybe, she'll be the one to latch on when that time comes. Fingers crossed! I pumped 6 months full time for Solana and now two months for Chloe. If I can get Chloe to latch on I swear I'll do the happy dance and post it on the blog! Oh, and I think Chloe might be a budding musician. She perked up her O's yesterday whenever I hummed scales and arpeggios to her! Is it too early to start planning to live my vicarious life as a professional flautist through her? Just kidding!

Done Freaking Out

Just to let you know, I'm done freaking out. Feeling much better and less insane today. I guess this hasn't been my best week for maintaining a positive attitude. If nothing else, blogging makes me aware of that so I can reflect instead of brooding. We're on our way to church to pray, sing, think, kneel, sit, stand. You know, the usual Catholic stuff. God is good and He'll take care of us. I know that. I just need to remember it sometimes.