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.

We've set a date!

Once our ultrasound results came back, the perinatologist met with Sean and I to discuss when we'd schedule the c-section. Suzanne's preference is for 32 weeks because we know that the survival rates are excellent and the babies will do well for several weeks in the NICU before coming home. I lean toward 34 weeks because I want the girls to get the most out of being in the womb while they can. Some very small studies show that mortality rates start to climb back up again at 34 weeks because the babies get bigger and compress the cords out of sheer size or the compromised cords can't supply them well enough when they get that big. But those studies are only of about 40-100 babies, so who knows if a single mortality in that group was an anomaly or a trend - there simply isn't enough published data to rely on it one way or another.

All along Sean had talked about getting to 34 weeks, but when Suzanne was there he suddenly changed his tune to 32. Wha?? He even went so far as to say that if something were to happen because we waited until 34 weeks he wouldn't want to blame anyone. *ahem* The ultimate guilt trip. I had to pause a moment, go out to the hallway and ask a nurse to remove the knife from between my shoulder blades. Jeez.

So, since their anxiety level was much higher about leaving them in, I ended up agreeing to early 33 weeks. We originally suggested June 9th (6/9/9) but both slots that day were already full, so we had a choice between 6/8 and 6/10. We thought 6/8/9 was a little cooler (seriously, these are our thought processes at this point) so we booked it.

Charlotte and Lilah will be born on Monday, June 8th, 2009. 32 weeks and 6 days. 7 weeks early. That's 9 days from now. Wow.

Day 38

Well, we had what is likely to be our very last ultrasound today and the results were....outstanding.

I am 31 weeks 1 day and in the last three weeks, the girls went from 1 lb 12 oz and 2 lb 1oz to 2 lb 11 oz and 2 lb 15 oz! They gained nearly a pound each (give or take). They also are closer in size, an 8% difference compared to a 15% difference, which means that one isn't compromised to an extreme degree. This is all VERY encouraging. They are not only growing steadily, but also evenly! They're still around 2 weeks behind, but that has been consistent throughout the entire pregnancy.

This means that they'll get to stay in mama longer. How long? We meet with the perinatologist tomorrow (she swung by tonight but since Sean wasn't here we wanted to wait until we planned anything) and talk about dates. There are still some risks if we wait too long, but we're leaning toward the longer end of things as much as possible.

One of the odd things is that the bigger baby has been the one on my right, but this time the one on my right was head up and the one on the left was bigger. It isn't very likely that one baby could have caught up to and then surpassed her sister's growth during this time frame, so the only explanation is that they switched places and positions. The first thing I asked was, How on earth could they have moved so much - there isn't possibly enough room in here for them to maneuver that much! Which is almost exactly what Sean said when he heard, too. I mean, I've had some seriously uncomfortable moments, but I had no idea they were pulling a Parent Trap and switching spots! (*Note to self - gotta get that Haley Mills version)

How did they grow so much all of a sudden? The only thing that has changed is that the weather turned nice and I started spending time out in the sunshine. Maybe they're solar powered like their mom....

Day 30

So, why haven't I posted lately? Truth is, there hasn't been much to say. Every day is pretty much the same with some slight variation and that seems kind of lame to write about. But I may be able to come up with something today.

I am currently 30 weeks, 0 days pregnant and the main developmental feature of this time period is that the girls should be growing, growing, growing. *fingers crossed* Our next ultrasound is a week from tomorrow and if they have continued to grow well, we'll keep them in as long as possible and schedule the cesarean for around 34 weeks. If their growth has plateaued at all, then it's better that they come out and avoid potential complications of not having the right nutrients and bloodflow and the cesarean will be around 32 weeks instead. Either way, we'll soon have a timeline!

Saturday was an absolutely gorgeous day and Sean brought Roscoe with him for his visit. It's the first time I've seen the puppy since I got here and I was so happy to cuddle with him. I met Sean in the back parking lot and Roscoe got so excited that he tucked his head under and turned the front half of his body upside down while getting petted. Then he got over it and was more interested in smelling or peeing on everything along the Montlake Cut, but that's how it goes.

Sarah came later in the day and brought a decoupage craft project for us. We decorated wipes containers with pretty paper and she even managed to find twin-related stickers!

And the big news: We finalized the names! I had a few favorites early on (Dessa, Avery, Kenley), but Sean used his veto power for various reasons and I was pretty apathetic about the remaining ones until I came up with one more. Sean mulled it over for a few days and last night as he was leaving, he rubbed my belly and said, "Goodbye, Charlotte. Goodbye, Lilah." It was his way of telling me that he liked the name! So they will be:

Charlotte Doreen Sparks
Lilah Choriene Sparks

Charlotte is Sean's mom's mom's name, Choriene is Bud's mom's name, and Doreen is my mom's mom's name. Yay!! It's so nice to have real names to call them instead of Baby A and Baby B all the time. We still don't know which is which, and probably won't make that assignment until we see them, but it's nice to know they will be named.

Sean has been working so hard on getting their room ready and he's doing an outstanding job. It takes so much detail work for all of the chair rail and trim, and he's really starting to master it.

Charlotte and Lilah's room creation

Day 23

My always incredible husband has been doing great work on the girls' room while I'm away. Once we got the bedding a few weeks ago, I could pick out the paint color, which is the green accent on the quilt. (I don't do pink.) The shade of green is the exact color that is in our living room, so it seemed sensible to use it again, but it was a little dark for an entire (small) bedroom. The answer: wainscoting!

So, Sean has painted the room and is in the process of putting up the white wainscoting over the last few days*. The next step is to add the chair rail and baseboard - both of which are slightly easier projects. And after that, he'd like to put up crown molding, possibly with a gap above it for rope lighting that can be on a switch. That's a big task all by itself!

*Thanks, Dad, for letting us borrow that finish nailer 2 years ago!

After all the big stuff is done, Sean will move the dresser in and put the cribs together, which gets them out of our lower living room and finally frees up some space! When I get home, I have a wallpaper border that matches the bedding and I'll probably hang the quilts up somehow since we're not supposed to use them until the girls are older.

I like the way this works - I pick everything out and Sean is my work crew. I see big potential here.

Day 21

Before the pregnancy my waist was somewhere around 30-31 inches. 13 days ago what used to be my waist was measuring at 42 inches. Today (28 weeks, 5 days) I'm measuring at 44 inches!
That's a lot of growth in less than 2 weeks! Hopefully the girls are growing like crazy and it's not just me : )

Day 18

We had another ultrasound today. Unfortunately when you're inpatient, you're no longer a priority for scheduling these things advance, so you're pretty much at the mercy of the radiology staff. We tried to ask them to give us an afternoon slot so Sean could be there, but they came to get me at 11 a.m.

Both of these babies seem to turn and shift every time I have an ultrasound (which has been nearly every day lately because their hearts are hard to find for monitoring if they're always in a different spot) and this time Baby A is laying across my belly with her head on my left, her body across my belly button and her legs on my right side and angled down. Baby B is on my left side, head down, with Baby A's head resting on her belly. B's head is on my spinal cord and her feet are up by my rib cage on my right. So complicated!

Their measurements came back and I'm reluctant to read too much into them until our perinatologist can talk to us on Monday, but here are the basics:

We're currently at 28 weeks 2 days. Baby A is measuring 26w6d and B is 25w5d. This isn't unexpected - every ultrasound has showed them about 10 days behind. We even discussed with our perinatologist a few days ago and she said that she figured we'd come in small: "You guys aren't big yourselves. These babies aren't going to be in the 90th percentile". (I was 2 weeks late and still 7 lbs.) Baby A is about 2 lb 1 oz, B is 1 lb 12 oz. That's a 15% difference and they don't usually get concerned until at least 20%. A is in the 28th percentile and B is in the 15th percentile.

*Side note - How can I only have 4 pounds of baby inside me? I'm HUGE! And I have another 4-6 weeks left! And they're supposed to start gaining 1/2 lb a week soon....

The ultrasound also showed a few other things I haven't seen before. I saw their ears and even hair on their heads! The waxy coating on their skin sloughs off, sticks in their hair, and that's what shows up in the ultrasound. It's about 1/2 cm long, and, I'm guessing, blonde. We didn't get great shots because we ran out of time when the tech had to do the Doppler on the umbilical cords to see what the flow looked like.

Here is baby A's head laying on B's belly. See the hair at the back of the skull!

Hee hee!

I love Bizarro.

Day 13

One of my biggest pregnancy fears has always been a C-section. It was the absolute last thing I would have wanted. I had several surgeries when I was born and already had scars on my belly from those. In fact, I didn't wear a two-piece bathing suit until I was about 21 because I was so self conscious about them. The last thing I wanted was more, and the thought of being cut into yet again terrifies me. So when I found out that mono-mono twins automatically eliminated the possibility of a natural birth, I was crushed.

There is something about the birthing process that brings the whole experience full circle. The initial contractions, telling someone that your water has broken, breathing, pushing - all of it to bring a little life into the world. It's all part of the experience and all something I'm going to miss out on.

So, in order to try to stay positive about all of this, I give to you....

Top 10 reasons to have a C-section (other than the babies' safety, of course)
10. Apparently vaginal birth can lead to crazy hormone changes. Sean doesn't need more crazy.
9. I hear contractions hurt.
8. All those blood donations I've made seem very karmic now.
7. The babies' heads stay spherical instead of conical - no hat cover-ups.
6. 15 minutes versus 48+ hours.
5. No pooping on the table during the delivery. Did you know about that?
4. No episiotomy, pelvic floor damage, incontinence or hemorrhoids (maybe that's 4 separate reasons).
3. Sean's head size being passed to his daughters is no longer a concern.
2. Scheduled delivery. I am a planner, after all.
1. My girl parts remain in their vintage condition!

Day 12

They changed the rules. It's now gloves, gowns and masks for people entering my room. It's to protect them from me and my possible germs, at least until my nose swab results come back.

Sean was quickly sweating.