23 days old

We walked into the NICU today and not only had Lilah been moved to a cubicle across from her sister, but she was also in a crib! No more isolette for this girl! (I took pictures but forgot the camera in the NICU) She's eating almost all of her food by nipple, and had about half an ounce by breastfeeding today. The attending said that she'd probably be able to come home the end of the week or early next week. We're getting that car seat ready!

Charlotte had her first re-test for MRSA post-treatment. It won't come back right away, but if tomorrow's test and this one comes back negative then she's off isolation precautions and we can go freely between her and her sister. Tomorrow Charlotte has her contrast enema to see if her bowel healed up and whether there is anything to be concerned about. I'm a little worried because she hasn't pooed in two days despite a suppository, and that can mean that she could have something preventing her from moving foods through her system - something like my Hirschsprung's. Fingers crossed! We want both of these girls home!

21 days old

As of yesterday, Charlotte was 3 lbs 14 oz and Lilah was 3 lbs 12 oz - they've put on over a pound already (since they lost some right after birth)! Charlotte ate several times yesterday, all by tube and only 4 ccs at a time. Not much, but she'll work her way up. They put a PICC line back in her hand even though she is now done with antibiotics because she still needs fluids and vitamins until she is up to full feeds.

Yesterday Lilah woke up a few minutes before her feeding time and started trying to suck on her blanket so we fed her by bottle and she sucked that thing down in no time. Looks like she's started to adapt to this "big girl" feeding thing! She still isn't maintaining her temp completely independently, so that is another step she has to achieve in addition to taking all feeds by mouth (she sometimes only does half before losing interest or isn't awake enough and has to have it by tube).

On Saturday, Sarah, Beth and Kristina threw us a very creative baby shower! It was especially nice to have pictures of the babies as part of the decorations - not many showers get that chance! The invitations had the little manila pouches for checking out books that you find in elementary libraries and said "Overdue!" The girls asked for additions to Charlotte and Lilah's book collection and our friends and family came through big-time! We're ready for some great reading!

One of my favorite games was a Newlywed style Q&A that Sarah worked on with Sean in advance. I had to guess what his answers to the questions would be - HIS answers, not what I thought the real answers were...this is key. She asked, "At what age will you teach Charlotte and Lilah the birds and the bees?" I said, "Well, they'll probably ask early on why they are twins and other people aren't, so we'll probably gradually talk to them about various aspects starting pretty early." Sean's answer: NEVER. Sarah asked, "Who will be your primary baby sitter?" I said, "My parents live pretty close, but I bet Roscoe will always be keeping an eye on them..." Sean's answer: The television. Sarah asked, "How many diapers will you change a day?" I said, "About 20-30, based on what they're doing in the hospital." Sean's answer: None. (This guy thinks he's pretty funny.)

Thank you so much for a great party, Sarah, Beth and Kristina!!

20 days old

Yesterday we got a chance to finally bathe Lilah! It was only a few inches of water in a tiny little tub, but it was one more "first" for us She was covered with a washcloth to keep her warm and it dwarfed her. She almost immediately peed in the water and then relaxed. You know the feeling. I know you do.

Today we found out Charlotte will probably get to eat Sunday evening, which is also the last day she'll get antibiotics. With any luck, she'll be off isolation on Wednesday once everything comes back negative! Charlotte currently weighs 3 lbs 14 oz and Lilah is 3 lbs 11 oz. These girls are growing just mama told them to. Things are looking up.

18 days old

I keep talking about the great smiles these girls have, but it's hard to capture because they're brief and the camera never seems to be ready.. Until now! This is Charlotte showing off her mom's smile:

17 days old

Today was my first time leaving the house for a social occasion - coffee with Sarah and Cara at a local cafe that caters to moms and kids. Sarah called at 9 to invite me and showed up at 9:30 - I woke up from an attempted mid-morning nap, showered, dressed and was ready in time! It was practically record-breaking for me and good practice for when I no longer have the luxury of time in the mornings when the girls get home. Add the coffee trip (and some kid lifting I admittedly shouldn't have done yet) to the rest of my day and I'm feeling sore this evening.

When we got to the NICU, I asked the nurse about feeding Lilah and she tested her suck reflex and said that she wasn't doing enough. I stepped in and offered Lilah my finger and she started sucking away, finally proving to the nurse that it was worth a try. Nurse Kate set us up with a bottle of 26 mL (nearly an ounce) and Lilah got to work. The nurse kept an eye on her vitals since preemies aren't often good at balancing the suck/swallow/breathe combination but Lilah remained completely normal the whole time and finished the entire bottle!

Charlotte's follow-up MRSA test showed up negative which means that the daily nose treatment is working it's magic. She just needs to finish the course and then continue to test negative! She'll be able to eat on Monday and then will get a contrast enema Wednesday (the only day the Children's hospital radiologist visits and performs these tests) to confirm that all is in working order. Her spinal results still haven't grown anything, so it was probably a contaminant and not an infection. She slept the whole time I was holding her today but still smiled in her sleep and gave tiny little whines when she stretched.

We seem to be getting far more pictures lately of Lilah - in part because there is more light in L's cubicle, partly because Lilah's moving and opening her eyes much more, and partly because of the complexities of keeping contamination from moving out of Charlotte's area. Right now, Lilah is always the one wearing clothing. I'm hoping we don't give little C a complex when she gets older. On the other hand, they're twins. Unless we tell them, they'll never know who is who in this photos. Now I just need to hide this blog posting....

The girls are gradually starting to take on some features - so far I think they have Sean's ears (he has lobes, I don't), and they got my dimples and furrowed brow. It's so exciting to see little bits of ourselves in these babies. I still can't believe they're ours!

16 days old

Not much has changed today.

Except that as I was gearing myself up to ask to feed Lilah, one of the moms who is visiting her baby in the NICU even more frequently than me said, "Oh, I think your nurse was feeding her today!" I looked at the stats sheet for the day and sure enough, the latest 3 feeds were done by bottle!! No one talked to me about it, no one called to say something had changed, she just went ahead and gave my little girl her very first real feedings. Three times. I tried to control my anger/sadness/disappointment, especially since that nurse had already gone home for the day and no one else there deserved to hear my rant about it. But I feel totally robbed.

I tried to feed Lilah at her next scheduled time, but she wouldn't wake up enough so she was fed by tube instead. Nearby, Sean was being a trooper and held Charlotte the whole time while wearing the gown and gloves and roasting just to be with his baby girl, who slept the whole time but occassionally flashed that grin that makes me giggle every time.

Oh, and the other change is that another baby in the NICU, but in a different room, has also shown a positive MRSA result. So, much to the nurses' frustration, the entire ward has been placed under isolation precautions. New gloves and gowns every time a new patient's cubicle is entered, even if the baby isn't being touched. This goes for visitors, too, so I'd suggest holding off on trying to see the girls until early next week, when Charlotte's isolation will be lifted.

15 days old

Running down the list of Charlotte's hurdles:

MRSA in nose - on antibiotic treatment for 5 days (this is day 2) and then follow-up testing twice to confirm it has resolved

Pneumatosis - No further evidence of any gas in the bowel wall on the last 4 x-rays. They're pretty sure they caught it in time and with the right antibiotics that it did no permanent damage. Charlotte finally pooed twice yesterday (after 5 days) so that is a great sign that her bowel is getting back to work. She still won't get food for another 5 days and is getting grumpy about having an empty stomach, but a pacifier or a finger seem to soothe her. At the end of the no food period, she'll have a contrast enema to confirm that everything is healthy and ready to get back in to action. Apparently a twin preemie in another NICU room wasn't as lucky to find the pneumatosis in time and didn't make it. The nurses have credited us with noticing something wasn't right with Charlotte and bringing it to their attention, potentially saving her life - something we hadn't even considered was a risk to them in light of the other preemie problems we were focused on.

Spinal fluid - They did get a clean spinal fluid sample and the initial result that looks for elevated white blood cell counts was unclear - not because of the lab or the sample but because the nurse didn't know how to read the results (I'm not terribly happy with this one's confidence levels or knowledge. She never seems to know the answers to my questions.) We'll ask someone else tomorrow. The bacteria (Bacillus) that grew the first time would still take a few days to grow this time if it is really there in her spinal fluid and not just a contaminant, so it will be awhile before we know anything.

Staph - This is new. The blood cultures came back this morning and showed that Charlotte does have staph in her blood stream, so they've adjusted her antibiotics to cover that as well.

The good news is that behaviorally Charlotte isn't giving any indication of not feeling well, so its hard to imagine all of this going on inside her little body. Today she was crying because she had shimmied out of her swaddling and wanted to be wrapped back up again. Once she was comforted, she was as content as could be.

Also good news: We talked it over with infection control and were told that although she has to remain on isolation precautions, I could still hold Lilah without gloves (but with robe) as long as I hadn't been in Charlotte's area yet. I held little L skin to skin for almost 2 hours and it was heavenly. I think she's making all the signs that she's ready to actually eat, not just through a tube, so we're going to talk to them about attempting a bottle tomorrow *fingers crossed* She's now 3lb 3 oz and continues to grow. Lilah is also maintaining her body temp very well with each increment they bring down the isolette, so it should only be a matter of days before the top of the isolette is removed!

I held Charlotte for about an hour after being with Lilah and I still feel bad that I can't be there for her more because isolation really does leave her isolated and in need of more interaction than she's getting. They finally had to kick me out because the nurses shift change at 7 means no one can be present to hear the status updates of the other babies. Well, with every day that goes by, I guess we're one closer to having her be done with all of this.

14 days old

Just when we thought we were starting to get a handle on things, something else gets thrown at us all. The labs for Charlotte's spinal fluid showed a bacteria that could be an infection or it could still be a contaminant - no closer to an answer. So they geared up to take yet another sample today in order to finally determine which it is. I tried to use the privacy room to pump during that time so I wouldn't hear her tiny cries, but someone walked in just before me, so I had to go back and pump behind a screen a few feet from her. They give the babies sucrose to help with the pain because it acts like morphine without the duration or addictive qualities, but hearing your baby cry and not being to help is still heartbreaking. A few minutes later I heard the doctor tell Sean that they couldn't get a clear sample due to a small bit of blood that was picked up, so they would try again tomorrow. *sigh*

The hardest news of all was that the latest of the twice weekly test swabs for MRSA (that they do on all the babies, in both the nostrils and umbilical cord stump) showed up positive for Charlotte's nose today. It doesn't mean that it's an active infection since 1 out of 3 people carry it and are entirely without symptoms all of the time, but it does mean that they have to keep an eye on yet another possible problem. They'll continue her isolation precautions (gown and gloves before entering her space) and give her a nasal treatment for 5 days, then wait three days, then test again, then wait three days and test again. If all the new tests are negative then she'll come off precautions. If any are still positive, even though she may not have symptoms, she'll be on isolation for the rest of her time in the NICU. What's worse? Since Lilah is her twin sister she's on automatic isolation precautions for at least 4 days as long as she continues to test negative. If she shows a positive, she's on the same regimen as her sister.

If you can even imagine (and I'm pretty sure you've tried but come shockingly short of what we're actually experiencing unless you've been in these NICU shoes) what I'm going through with not being able to bring the girls home and act like a mommy to them all this time, try this: It will be at least another 2 weeks, minimum, before we can even think about bringing them home; We can't touch one girl with our bare hands for at least 11 days; and now we can't touch the other for at least 4 days and possibly another 11 after that. If you're a mom (or know someone you can relate this to), imagine the first time you decided you'd try to tear yourself away and leave your baby with someone else while you went out. You probably thought about the baby the whole time you were out and were itching the whole time to get back as soon as you could. I go through that daily only I don't get the part where I get to cuddle and feed and adore them constantly.

I tear up when I see another mom getting to carry her baby around or when I go to Babies R Us and see all the things that are pointless to buy because there is no telling when we'd actually get to use them. I'm starting to get worried about the baby shower next weekend, which I'm certain will be lovely, because I might end up crying through the whole thing.

I just want to be a mom. And don't try to tell me that having them in the NICU is the best thing I could do as a mom or that visiting the girls is exactly what they need - that's not being a mom. That's passively sitting by and watching the weeks pass with my hands tied. I want them here with me where they can hear my voice all through the day and I can pick them up and comfort them when they cry. I want to see them grow up without looking through plexiglass. I'm tired of seeing the horizon and then walking a little further to find that it moved. This. Really. Sucks.

13 days old

This post will be quick because I am barely awake enough to see the keyboard.

There has been no change with Charlotte's condition and her labs still aren't back yet so there is no update on what her infection is. Hopefully tomorrow.... She gets a PICC line in this evening since she'll rely on IV fluids and vitamins for at least the next 7 days and traditional hand IVs aren't tough enough to withstand that timeframe.

I donned a robe and gloves and held Charlotte for about an hour and she was a little restless but still content to cuddle with me. I held Lilah skin to skin for over an hour and she was alert and wide-eyed in her adorable way for half the time and sound asleep for the rest. These girls are so super cute.

Today I drove myself to the hospital so Sean could have a well-deserved low-key afternoon. It was the first time I've driven a car in over 2 months! It felt good to be behind the wheel, although my errands didn't pan out well. I went to the bank to deposit some checks and when I saw that there was an 8 person wait and only one very slow teller, I got the bright idea to go through the drive-through. I put the checks and form in the cannister and watched it get vacuumed up the tube - only it didn't come out on the other side. After the teller tried over and over to retrieve it, she ended up telling me that it was stuck until they could get someone out on Monday. Then I went to Babies R Us looking for something in particular and they were all out. 520 was closed for the weekend, so I took I-5 and got off at 45th, which was down to one lane due to construction. *sigh* At least I made it in the end and got some girl time in!

12 days old

The initial results of Charlotte's spinal tap showed something growing. It could be a contaminant, which is what they're leaning toward, it could be whatever virus is in the rest of her system since preemies don't compartmentalize these things, it could be an actual spinal fluid infection, but they won't know for sure for a day or two when the bacteria growth is big enough that they can look at it under a microscope.

It could also be Necrotizing enterocolitis, where portions of the bowel undergo tissue death caused by a pneumatosis (gas in the bowel wall). It's mainly sseen in preemie infants from some sort of bacteria passing through the bowel wall. They definitely think they saw the gas in her last few x-rays (she gets them every 6 hours, but may have caught it early enough that no permanent damage was done, if that indeed is what was causing Charlotte's problems). The bacteria from an infected bowel could just be running through her whole system, so either way she's now on a triple course of broad spectrum antibiotics and no food by mouth for at least 7 days.

I did get to hold her today, wearing a robe and gloves, and she was eager to suckle my finger - maybe an empty belly was good stimulus to get her inspired. She was wide-eyed and moving around for most of the time, which was good to see.

Lilah continues to sprint along, gaining weight and giving us the occasional giant smile (which I know means that she's pooping but we find adorable anyway). She also passed her hearing test today - way to keep up the streak, little one!

11 days old

Looks like Charlotte has an infection of some sort - her white blood cell count is elevated. X-rays showed that a small part of her bowel is enlarged, which could mean a vast array of issues or it could mean nothing at all since an infection elsewhere could mean that her body is just redirecting it's attentions. The spinal tap turned out negative and they're doing blood tests for other changes every few hours. The results of the tests for which kind of infection she might have won't be back for 48 hours so they've put Charlotte on an antibiotic that they usually use to treat most infections they see in the NICU.

In the meantime, they've taken out her umbilical IV line in case that is the source, and replaced it with one in her hand. She's also off feedings until this is all resolved and her digestive system is ready to get back into action. They've inserted a tube into her stomach that intermittently pulls out any contents so they can keep an eye out on what she's generating. So the progress she made in getting off the emulsified fat infusions, vitamins and fluids by IV has been turned around.

Charlotte has also been placed on an infection quarantine so as not to spread anything to other babies. In order to touch her, you have to be wearing a gown and gloves.

The good news is that she was sleeping but stretching and shuffling around today, which we haven't seen since Sunday, so that is a little reassuring. She has also only had one dsat since the treatments have started, so that is always nice to hear. Let me tell you, it is freakin' scary to get a call from the hospital - no matter the reason. Since her abdomen was distended and her bowel enlarged, I was afraid that she had Hirschprung's and would need some sort of surgery to repair it. I don't want Charlotte to have a scar and be different from her sister, or anyone else, because I had that and it wasn't easy to deal with growing up.

Lilah is now on half-feeds (breast milk supplemented with super-fortified formula) and totally off the IV, so they pulled out her PICC line entirely. Now the only attachments she has are the feeding tube and the monitors for her heart rate, respirations and O2 levels, which all have to stay on as long as she is in the NICU. Way to go, Lilah!

10 days old

At least, they were 10 days old yesterday, which is the information I'm posting....

On Monday, Tuesday and again yesterday, Charlotte seemed really lethargic. She was sleeping nearly every moment and she hardly reacted when someone would mess with her to change a diaper or give her attention. We've been starting to get a little concerned about it but the staff said that part of it was that she was taken off the caffeine (which helps stimulate their little nervous systems) and they didn't see any signs that she was fighting anything so they'd keep an eye on it. At the same time, she started having more and more dsats (where her breathing, heart rate or oxygen saturation drops) that needed the nurse to pat her or move her in some way so she would remember to start breathing again. Good thing for those monitors! Yesterday she had stopped breathing 8 times when we arrived and several more while we were there so they decided to put her back on the cannula to give her a break from working so hard. Then she had a few more dsats so they put her back on the caffeine. Again, they tell us this is nothing to worry about - it's all part of the path that's expected from babies this small.

Lilah's breathing is still outstanding thanks to the surfactant and she hasn't had a dsat in over 5 days. She and her sister are neck-and-neck in accomplishments, which is pretty much what I'd expect for the rest of their lives!

Charlotte is now eating a grand total of 5 oz of milk and formula supplement a day and they've taken her off the iv fat and assorted fluids. Before they put the next batch in her feeding tube, they draw out whatever residual is left from the last feeding so they know if it is all getting processed. Charlotte has had quite a bit of residual lately so yesterday they only fed her the difference until she starts digesting it all better. Lilah is up to 2 oz a day and well on her way to milk/formula only. Both of them still get bumped up by 1 mL every 8 hours and both are back at their birth weights!

**Update: I just got a call that Charlotte has had a bad time of it since we left last night, so they're running additional tests like drawing labs, taking x-rays of her abdomen and doing a spinal tap. My poor little girl! we'll know more when we get there this afternoon but right now I'm trying not to cry.... It's the first time we've had a call from the hospital and my heart dropped when I heard who it was. I was so hoping little Charlotte would pull out of it on her own.

I'll post more this evening so you're not left hanging.

Ummm....

I obviously was riding some serious adrenaline until now. It's run out and I am facing exhaustion. Maybe due to losing several hundred calories a day into a plastic bag? (But back to pre-pregnancy weight!) *yawn* I will post tomorrow....

8 days old

Happy birthday, Charlotte and Lilah! You're one week old today!

These posts are starting to sound a bit repetitive, but the girls keep doing well, so I'm glad it's always the same good news. Charlotte will be taken off the bilirubin lights tomorrow and there's a good chance that Lilah will be put on for two days. Charlotte was completely racked out the entire time we were there today, and the nurse said that she had been all day. We wanted her to rest and make the most of the lights so she never has to go on again, so except for my hand on her back and singing softly while I was pumping, we didn't disturb her.

When we came in, nurse Maureen had put a tiny little t-shirt on Lilah, so we pulled out our bag of handmade preemie clothes, courtesy of one of my amazingly crafty colleagues, and played dress-up. Hey, they're practically dolls. At least doll-sized. The staff loved all the outfits and wanted to see them all. They are made of soft, infant-friendly materials and use stitching that wouldn't irritate their skin. They also have velcro openings in the front, on the sides and along the tops of the shoulders to accommodate wires and tubes as needed. Very clever.

Lilah was also ready for skin to skin holding with me and since her respiration was slow and steady, nurse Maureen asked if I wanted to start training my little girl for breastfeeding. Lilah was still fed 9 mL via her feeding tube, but she got to practice latching on and hopefully will start to associate it with a full belly. She was rooting around and suckling, just not very well. She's still pretty small to pull it off, but we're getting closer! Luckily for you, we did not photograph this event.

7 days old

Today is our first anniversary! It went by so fast and was so eventful. If the rest of our years together keep going like this, we're in for some pretty amazing times. For instance, who would have thought going in to this that we'd have two kids before our first anniversary and we didn't even start early. Married in June, honeymoon in October and then we figured we'd let nature do it's thing after that, figuring it would be at least fall if not 2010 before we had a kid. Most people we knew took anywhere from several months to a few years before getting knocked up, but Sean and I surprised ourselves with a positive pregnancy test in November! And then there were two babies. And then we had them 7 weeks early. Everything was on an expedited timeline for some reason. And we couldn't be more pleased.

Happy anniversary, sweetheart. Here's to the rest of our lives. *kiss*

Today Charlotte was back on the lights for her jaundice since her bilirubin levels went back up a bit. We were warned that it would probably rebound again, so it wasn't a surprise. But both girls are off the nasal cannulas and getting their feeding levels increased every 6 hours. In addition to breathing on their own and maintaining body temperatures, they also have to eat independently. Lilah is doing great at sucking on a pacifier and once she does that and has her respiratory rate stay at about 40 consistently, they'll start trying out bottles on her. Charlotte, on the other hand, was not impressed by the pacifier or even a finger. She just kind of looked around with her brow furrowed in either confusion or concern. We'll keep trying, though!

For the first time, Sean got to experience skin to skin holding and Lilah was enjoying every minute. She even completely turned herself over while in his arms. It was wonderful to see them so cozy.

I also got to hold Charlotte, but swaddled this time since she couldn't stay away from the lights for very long. Her first few minutes she was wide awake and checking us all out. We've never really seen her open her eyes for this long (much like Lilah yesterday), so it was a great treat. Everything was so close to her vision that she got a little cross-eyed.



But then for the next half-hour she was sound asleep, and for most of it, so was I.

6 days old

Before I begin, I'd just like to note that this is post #101. When I started this blog, Sean and I were still just dating, not even living together yet, and I had no idea, or intentions for, how far this blog would go. Now it's a resource for people near and far to keep up with our lives and those of our animals and now our daughters. I get comments when I go too long without posting and comments about our friends' and families' favorite parts of our postings. I get requests for special topics and events in our lives and requests for even more posts. People visit daily and sometimes even hourly, to see what we have to say, which astounds me most days. We have ordinary lives, at least as far as I can tell, and there isn't much that makes us any different from the rest of your neighbors and friends, yet somehow you seem to remain interested.

When I noticed that this was post #101, two thoughts struck me. The first was that maybe the one thing that sets us apart from other blogs, or even other people, is that Sean and I truly appreciate everything we have in our lives and see the humor in it all. We know that we're pretty lucky to have what we have: steady, reliable jobs; friends and family that love us; our health; and, most of all, each other. Most of our postings are about pretty mundane things, but we post them because even the little moments make us infinitely happy. It's not much, but Sean and I are so happy together that everything we do seems fun and exciting to us. And I guess that in itself is pretty damn special.

The other thing that struck me is that, although I do post a little bit for me, to keep a record of our lives in some way, I really write this blog for you. If you're reading this, then I'm talking about you. You care enough to check up on us, even if we've never met. Maybe you're interested in a certain topic that kept you checking back (Cooter's entries? Tales of the epic hospitalization? A need to know what these members of your family are up to?) or maybe you like the writing itself. Either way, if you didn't read this, I probably wouldn't keep up with it. The blog would have faded away with just a few short entries and been lost in the black hole that is cyberspace.

So... thank you. Thank you for checking back. Thank you for sharing the blog with others. Thank you for commenting. And most of all, thank you for reading. This blog is yours as well as ours. Thank you. And now, on to the post....

_________________________________________________

Charlotte and Lilah are both now off the bilirubin lights! Yes! Both have also been moved up to 5 mL of milk every two hours (about 1 tbsp) via feeding tube and will continue to have 1 mL added to that every 8 hours. Let the weight gain begin.

Charlotte' s nurse was getting ready to feed her right as I started pumping, so she used the brand new milk when feeding her since it was already warm. I pictured a dairy company slogan: "Fresh from the cow to you". In addition to feeding Charlotte with it, the nurse took just a few drops of the milk and put them in our little girl's mouth, followed quickly by a pacifier. It's a bit of stepping stone to prepare her for actual mouth feedings at some point in the future.

Yesterday the staff was talking about removing Charlotte's cannula altogether and early this morning she was one step ahead of them. She pulled it off her face entirely, tape and all, and they figured they wouldn't go to the trouble of replacing it, so now she's breathing entirely on her own without any assistance at all! The doctor stopped by and said that he was joking with staff that another little baby should probably try the same thing and "pull a Sparks". Congratulations, Charlotte - only 6 days old and you're already a verb!!

Today I finally got to hold Lilah skin to skin and we laid there together for almost two hours! The first half-hour she was patiently looking around, and the rest of the time she was peacefully sleeping, and I soon joined her. I absolutely can't wait to do this with the girls once we get them home!

Later in the afternoon we noticed that Lilah had a rare few minutes of wide-eyed alertness. Usually she quickly blinks and then closes them again, so nurse Terry mentioned that it would be a great time to get a picture. Of course! Why it took me so long I don't know. These are some of the best pictures of her yet....





In the meantime, I'm working on healing from this major surgery. Yes, I am reminded that nearly every action from taking a seat to laughing at my husband (his stories, I mean laughing at his stories. Hi, sweetie!) uses abdominal muscles. I'm on oxycodone, Tylenol and Ibuprofen. I'm also taking prenatal vitamins and then a stool softener because the pain meds back you up. I'm walking from room to room, but still using a wheelchair for distances much longer than that. This morning I woke up to find that my hands had swollen so much that my wedding ring was cutting off the circulation to mny finger - Sean finally got it off with some dish soap and clever maneuvering. Luckily the NICU is next door to Labor and delivery so while I was visiting the girls I went over to follow up with a doctor. Apparently all the fluid from the pregnancy, which is more when you have twins, needs somewhere to go after birth and gets absorbed into other places like the feet, face and hands. On top of that, my blood pressure was 149/90, which is high, so they gave me a diuretic for the next 5 days to flush those excess fluids from my body. I'm taking more pills than I have in my whole life! My nightstand is a mini pharmacy.

Sean is still being wonderful about getting up to get me things I need and making sure I don't carry anything or stay on my feet too long, but I'm ready for this recovery to end and to feel normal again!

Still day 5

My entry earlier this morning was about yesterday, but this one is about all the happenings today. Sean and I got kind of a late start on the morning because I was taking my time getting ready and trying organize just a wee bit along the way, so we didn't get to the hospital until just before noon. Then we had to leave around 5 to get back to the house in time for our grocery delivery (HIGHLY recommend Safeway.com!!) so it was a short visit with the girls, but another great day for us all.

So now both girls are on nasal cannulas and breathing room air, with no supplemental oxygen. (The cannula gives them a little bit of helpful pressure behind the air.) The nurses said that the girls are doing so well without help that they may be moved off the cannulas altogether tomorrow!

Charlotte was taken off the bilirubin lights today and Lilah will probably be off them tomorrow. There's a chance the jaundice might come back after a few days and they'll return to the lights, but maybe not. Without the lights, they don't have to wear the foam eye masks and we get to see their faces and watch their eyes open every once in a while. The color is still the undetermined vague infant color right now but we're pretty sure blue is in their future.

Both girls are also up to 3 mL of milk every 2 hours by feeding tube and handling it very well. It will probably continue to increase every day until we see how they do drinking direct from the source. In the meantime, I'm seriously stockpiling their supply in anticipation of how much two girls will need at some point.

So what are the next steps they need to take before being released? They need to be able to regulate their body temperatures independently and they need to hit a certain weight - word on the street is 1800 grams, but there wasn't a lot of certainty behind it. Charlotte is currently about 1300, so she needs to gain about 30%, which is pretty significant. Charlotte is also doing well at maintaining her temperature and they're slowly lowering her incubator temp by a half-degree at a time to see if she can keep it up. If she does, they'll soon remove the top of the incubator and let her wear clothes, and then she'll graduate to a crib before finally coming home. Lilah isn't doing as well at regulating, but that's in part because she is so much smaller and has less body fat to rely on.

But being small doesn't mean being mellow. Lilah can't be swaddled because her skin needs to be exposed to the lights, and right now she would desperately love to be contained. Her little arms flail about and she arches her back and pushes her feet against the rolled-up towels and her toes get all tangled in her wires like she's a monkey swinging from vines. She constantly wants to grab something with her long fingers and that something tends to be either her mask, her feeding tube or her cannula - all of which she's yanked on enough to cause problems. Today I called her a troublemaker and the nurse replied, "That's a good word for it." Lilah is just a sensitive little girl, the one whose heart rate skyrocketed in the womb alarms went off, and she needs to be comforted better than what she's been getting.

Finally, the best part of the day was that Sean got to hold Charlotte himself for the first time. Daddy cuddle time!! It was like she's always belonged in his arms...

5 days old

Thursday was another great day for us all! Lilah was doing so well on the CPAP that they moved her over to a nasal cannula and she is just using room oxygen without any supplemental O2! And they are talking about moving Charlotte to the cannula at some point today. Both girls are still on bilirubin lights because of jaundice, but that should just be for another day or two.

The best news of all is that Charlotte was stable enough yesterday that I got to hold her for almost 2 hours! I changed into a robe that opened in the front and reclined in a chair next to the incubator. The nurse placed her on my chest, skin-to-skin, with her head up by my chin and we both just relaxed. Charlotte barely moved the whole time because she was so at peace. I imagine that her ear against my chest gave her the experience of my voice and heartbeat similar to the womb. I placed one hand on her back with my thumb out for her to grasp, and the other hand curled around her tucked up legs. I drifted in and out of sleep myself, partly from exhaustion and partly from my pain medications. It was complete bliss.

Yes, her hand is wrapped around my thumb. So tiny!

I also arrived home last night since my pain seemed to be manageable enough to be on my own. Over the last few days Sean had taken home a few items at a time and I spent the morning packing up everything that remained, so while I was holding Charlotte he was able to load it up in one trip and bring it down to the truck. After 53 days, I was going home.

It was hard for me to know that I brought these little girls with me to the hospital and now I was leaving them behind. I'm their mom - I'm supposed to be taking care of them and here I am walking away. Since I did know that it was coming, and I got to spend the day with them, it was a little easier and I didn't cry, but now all I can think about is getting back to them. I know they're being very well taken care of and I have nothing to worry about, but I think I'm addicted. I need my baby fix.

The ride home was surreal. It's strange to think about the whole world continuing on without me and seeing people on bicycles and going about their lives reminded me of all I must have been missing while in my isolated little room for 53 days. I saw a brick retaining wall in a neighbor's yard that wasn't there when I left, trees and bushes with leaves where bare branches had been. My cul-de-sac installed a secure mailbox and ours was pulled out of our yard. (I won't comment on how the rest of our yard fared while I was gone.) It felt like coming home but at the same time a little like I was just visiting. It would seem like an easy thing to adjust to being back, but it's almost like I have to re-establish myself and create routines all over again.

Roscoe was absolutely thrilled to see me walk in the door. He did his excited sit where his ears are pinned to the back of his head and his chest sticks out and he looks like he can barely contain himself. He wanted nothing more than to get petted by me and every time I stopped he raised his paw and tapped me to remind me that he was still hoping for more. Cooter, on the other hand, acted like nothing had changed. Cats.

The best part, of course, was being with Sean. He could move around the house and take care of odds and ends and yet still talk to me the whole time. We got to cuddle on the couch. We got to fall asleep next to each other and it was so comforting to just reach over and put my hand on his arm or back in the middle of the night. We're both on our computers this morning but chatting the whole time. I missed just being able to interact as part of our daily lives. Even though I saw him nearly every day, it wasn't the same - I missed him. And now I get him back.

Sean's sister Tanya is coming to visit this weekend and will help us with getting the house back in order, which is great. We love spending time with her and I am definitely not ready to do much around here even though my anxiety levels are up just looking at all that I'd like to get done and organized. It was such a whirlwind before I left and Sean, understandably, didn't have time to keep up with all the things I normally keep up to "Britt standards". (Sean - You're not going to like the Tupperware drawer. Me - But they stack!) There is much to be done.

3 days old

Lilah had a bit of a rough night with her apnea. Babies at this age sometimes work so hard at breathing, or aren't used to having to breathe, and they sometimes forget to do it. Their heart rate slows, their oxygen levels drop and they need to remember to start breathing again in order to turn it all back around. Both girls have apnea, and they usually start breathing again in about 20-30 seconds, but if they don't, the staff just needs to pat their foot or back or belly and it will stimulate the baby to breathe again. Lilah had several of these apnea moments last night but the patting and rubbing didn't work right away so the nurses had to "bag her" until she started back up again.

The recommendation they've been holding off on was finally solidified - Lilah needed to be intubated and given surfactant. This means that she had a tube put down into her lungs and the surfactant administered directly through the tube. This is normally done within the first 48 hours of life, if at all, otherwise it might not absorb into the lungs all the way and it is too late to do any good. Then, once the intubation happens, the baby is typically pretty stressed out and fighting it so much that she needs even more help temporarily breathing, so they attach the tube to a ventilator. Eventually, if it all works as desired, the surfactant is absorbed quickly, the lung function improves dramatically, and the baby is taken off the ventilator.

Everything went perfectly with Lilah! In fact, about two hours later the ventilator was only using room air and not supplementing with any additional oxygen. And a few hours after that, she was moved off the vent and back onto CPAP and is once again only using room air and nothing more!

Both girls have blood levels that show they have jaundice, so they are both under special lights (bilirubin lights) for a few days that help them overcome the jaundice. They have to wear small "blinders" to protect their eyes from the lights, so there is unfortunately one more thing covering their cute little faces.

Both girls are also being fed 2 mL of breast milk every 4 hours through a feeding tube, which is an excellent step!

But, like I keep saying, this is all completely expected and just a little bit of time will show that the girls have completely recovered and are ready to go home!

Charlotte

Lilah

They're he-re!

Sorry for the delay in posting this - it's been a whirlwind and hard to balance our time and take care of ourselves all at once.

Charlotte Doreen Sparks born at 8:21 am, 3lb 8oz, 16 inches long.
Lilah Choriene Sparks born at 8:22 am, 3lb, 16 inches long.

Here's how it went:

At around 6 am on Monday, a nurse came in and shaved my bikini line (how many times in your life will you have someone say, "I'll see you in the morning for your shave"?), wash my belly for 5 straight minutes, and insert an IV into my hand. A little after 7 we left Sean behind in the room and they brought me in to the operating room and had me sit on the table. A variety of people in scrubs and masks started introducing themselves, but unless I had met them before it was hard to differentiate which pair of eyes went with which person.

The anesthesiologist came in and introduced herself and we got started. On my right hand I had a set of IV tubing and a pulse meter, on my right arm I had the blood pressure cuff that was inflating intensely every few minutes, on my belly I had two bands and monitors for the babies heart rates, and then she asked me to do the classic bending forward for the spinal and epidural needle. Now, I'm not claustrophobic, but I was feeling very overwhelmed with all of this gear on and actually already starting to panic a little.

She put in the first shot to numb my spine area, and it burned for a second but was otherwise fine. She went to insert the needle for the spinal and I still wasn't completely numb yet - it hurt so badly that I screamed "F*CK" and nearly jumped off the table. I quickly apologized for swearing, but it was my first response!

My legs got a little weak so when they had everything in, they swiveled me around and had me lay back. My legs almost immediately started feeling the hot tingly sensation as though they had completely fallen asleep and my instinct was to try to shift them and get the circulation back, but of course neither moving or stopping the sensation was a possibility. The tingling was painful and maddening but it did mean that I was numb and it was a common result of the anesthesia. Then it started creeping up too high and my mouth and tongue became numb and I started hearing a metallic echo of every single sound in the room. I couldn't get the noises out of my head and that's when I really started to panic. It was all too much for me to handle all at once and I was in misery. Then the shivering started. I told Sean when he came in at that point that I'd rather be pregnant for the rest of my life than to go through all this again.

Within a few minutes, the drape had been placed just under my chin and I couldn't see them start the cutting, but I did feel the pressure and movement happening. It only took about 5 minutes and they were telling Sean to get his camera ready because the first girl was on her way out. We all held our breath for a moment and then suddenly I heard Sean say, "Oh, there she is!" and we all heard the baby give a strong cry. I said, "Oh, she's crying - that's so great!" because it meant she had some level of lung function all on her own, which was very exciting.

They quickly handed baby A off (who turned out to be the bigger of the two) and reached in for baby B. They told Sean to get ready for the next girl, and sure enough, out came baby B. She gave a small sneeze and was quickly whisked away. The perinatologist then pulled up the umbilical cord and we were all amazed to see that there was just one small loose knot between the cords - not at all the tangled mess we were all anticipating. It was actually pretty amazing that it wasn't worse!

The pediatrician asked if Sean wanted to join him, which had been the plan all along, so he went along with both girls into a side room off the OR where they were weighed and stabilized. Baby A was breathing room air, so they gave her a nasal cannula, but baby B needed a little more help so they put her on a CPAP (more on that later). Before they took the girls back to the NICU, they did wheel the incubators past my gurney so I could see them both, but it was so far away and my angle of view was so awkward that I couldn't see much more than that there was a baby inside.

In the meantime, they took another 30-40 minutes to sew up my uterus in two different layers (in case I wanted to have another pregnancy at some point) and then neatly stitch up the skin. I was moved to a nearby room for pain management and ended up spending several hours in there taking about 10mg of morphine altogether because I was in so much pain. I think the majority of the pain was due to the pitocin they were administering to try to get my uterus contracting back to a smaller size - it's tough on a newly cut uterus to contract that much.

We made a few calls to our parents so that they could relay the information on to everyone else and Sean spent the next few hours going back and forth between me and the NICU, getting updates on the girls and checking on us all. He took such great care of us all!

We made a few calls to all of our parents with the basic information so that they could relay it on to everyone else and eventually the nurses wheeled me in to the NICU to really see my daughters for the first time. They seemed so small and yet so big to have fit into my belly all at once! I was able to touch them briefly and then they brought me back to recover in the room where I'd already spent 50 days.

Later in the afternoon I was able to get into a wheelchair (thank you, Torradol, painkiller of the Gods) and visit the NICU for a longer time. I ended up being able to hold both of the girls at some point and Charlotte even opened her eyes and looked up at me for a few minutes. They were so tiny and light and I could barely make myself give them back.

They were born so early that their bodies didn't have much of a chance to make enough surfactant in their lungs (Here is a link to a site that explains it http://www.curoservice.com/parents_visitors/surfactant/) and so breathing is difficult. Even though they started out doing ok, the more they ask their lungs to work without enough surfactant, the harder it becomes, so they seem like they're going downhill but it is to be expected. On Monday evening, Charlotte was moved to CPAP and now on Tuesday afternoon the nurses are talking about moving Lilah to a ventilator. The good news is that some babies will get through this on their own and start making enough surfactant to move away from breathing assistance. For those that don't, once the baby is on a ventilator the staff can administer artificial surfactant and have the same result.

Charlotte had some high blood sugar when she was born, so they gave her a reduced IV feed until it was back to normal, but that made her a little dehydrated and it was hard for them to find a good vein when they went to change her IV to a new location.

All of this was completely expected and not at all worrisome since we know they'll get past it eventually without any lasting effects. It's just tough, particularly on me, not to be able to hold them and to have to wait until they're awake before reaching in to touch them so that we don't disrupt their rest. But when they do wake up, they sometimes open their swollen little eyes and look right at us and that makes everything else fade away.

Charlotte's facial features are a little more defined because of her larger size, and since they're both so little, right now they just look like squishy baby faces, but some people have said they resemble me. I do know they have Sean's ears, incredibly long feet and fingers, and tiny little rosebud mouths that are simply adorable. The CPAP machines are covering their faces most of the time, so I haven't had a chance to study them closely, but they'll change so much in the coming weeks that it will be fun to see them mature and speculate on who they look like.

In the meantime, we're trying to balance taking care of ourselves (my pain is a big focus) with being around the girls as much we can, so we haven't had many chances to touch base with people, even though we know you're all itching to hear more. We'll continue to post here on the blog with updates. Check out our photo albums to see a little of our adventure!

Hospital pictures

Charlotte and Lilah

Day 49

Here are some zero hour pictures - delivery tomorrow morning! We get wheeled into the OR at 7, the action will start around 7:30 and the girls will enter this world before 8! They graciously gave us a tour ahead of time so we'd have a better idea of what to expect:

This is the OR where all the action happens.

This is the room off the OR where the girls will quickly go for for any interventions they might need.

Sean will be taking pictures and video throughout the morning and we'll do our best to post it when we get a chance. The day will be a whirlwind and between my c-section recovery and any care the girls will need, we still have no idea if we'll be able to host visitors until at least the evening, but most likely it would be a day or two. All visitors to the NICU (only two at a time) need to be escorted by a parent, and while we know everyone will be itching to see them, it may be a little rough on Sean to cycle everyone through as much as they'd like during the first few days. We hope to keep you informed as much as possible, though! We'll keep you posted through the blog, e-mails and Facebook. Yes, we're that techy couple.

The next time I post, I'll have two daughters!

Day 43

These pictures don't do me justice. I look MUCH bigger in person. Here is Britt at 31weeks, 6 days.