life with two begins

I have two sleeping babies right now - woohoo!  I should probably be napping myself, but then I wouldn't be able to enjoy my Drumstick ice cream cone in peace and quiet - yummmmm.

One of the things I've been looking forward to the most is photographing my two girls together.  Unfortunately, Laci thought it would be a good time to come down with a snotty, coughy cold.  I've been playing germ referee since Friday morning, and despite my best efforts, Mia is now a bit snotty and coughy too.  I'm doing my best to not become an uptight, germophobic wreck, but I'll admit, it's a bit of a challenge.  The cold appears to be mild and Laci is already feeling better, but I'll feel much more relieved when Mia clears up too.  Then, we'll let big sister and little sister get to know each other a little better.

So far, Laci is adjusting well to her new little sister.  It helps that my mom is here to provide a second, comforting lap in times of serious distress.  Laci alternates between wanting to smother Mia with love and blankets, to ignoring her existence altogether.  Mia is already interested in watching her big sister as she creates little disasters everywhere she goes.  It seems like the perfect sisterly relationship to me.

Mia's health is good, other than the recent cold onset.  I removed the last of her bandages yesterday, so other than some healing scars, you'd never know anything was wrong with her.  She met the pediatrician on Friday and weighed in at a whopping 6 lbs 15 oz, and is 20 inches long.  Her baby reflexes passed all the tests and her lungs sounded healthy.  She goes back on Thursday to check in on her weight, which I am not worried about a bit since she has become quite the piglet in the last few days.

As for Ryan and I, well, we're just hanging on for the ride still.  Ryan is back to working on the house project full time until he returns to work in a couple of weeks.  I'm just trying to figure out how to hold two kids on one lap without spreading germs - which is pretty much impossible in case you are wondering.  I'm spoiled by Ryan and my mom who are helping me around the clock, so I really can't complain.

And since my hands have been pretty full these past couple of days, the Canon has been resting while my phone is taking most of the pictures.  I like the easy editing, and the lack of pressure in trying to figure out the correct exposure, and now that I have a Picasa app, uploading pictures is easy too.  I may never go back...oh, who am I kidding...I can't help myself.  But, the phone is great for capturing those little moments...

...testing little sister's pacifier...

...stretching in the sun...

...having a snack...

...building forts...

...trying to put on stubborn socks...

...and a special red smiley face sticker from my big girl...

bonding with mia

I had always assumed the parent-child bond was an automatic and instant bond cemented shortly after birth. Recently, I have learned otherwise.

When Laci was born, we were bonded instantly. One look at her little face and I was smitten. I held and cuddled her, and studied her face for hours. She rarely left my sight during our stay in the hospital, I changed her first diapers, she slept on my chest. It was a connection easily formed.

When Mia was born, I held her for only a few short minutes before she was taken away for medical attention. She was poked with needles and hooked up to monitors before we could get a picture of her. She was my baby, and no doubt I loved her, but that powerful bond I remember feeling with Laci wasn't as automatic with Mia as I had hoped.

I was able to hold Mia a second time at the hospital, for only a few minutes, before she was intubated and prepped for her helicopter ride to Davis. I wouldn't see her again until later that evening. I remember the first time seeing her in the bed at Davis - so many tubes, needles, monitors, and an oscillatory ventilator that actively wiggled her little body to help it breathe. It was my baby, but there was a distance I felt from her. It didn't feel like looking at my baby, she just looked like a very sick little one that I could neither hold or help. Her condition was very serious and her survival through the night was questionable. I was afraid to love her so much if she would only be taken away so quickly. I suppose it is the heart's way of protecting itself by keeping a distance, keeping me from loving her too much.

I would love to say that I believed in my girl's survival from the beginning, but I would be lying. I had so many thoughts in my head that I wished weren't there. Would I be signing a death certificate just hours after signing her birth certificate? Would we be going home with a baby or empty handed? The first few days at UCD, especially those first 24 hours were very surreal. I felt like I was watching myself from a distance, like some horrible scene on TV that I couldn't turn away from.

I had planned to breastfeed Mia, so the nurses encouraged me to start pumping right away. They encouraged me to keep pumping every 2-3 hours, on the same schedule the typical newborn would be eating. It was incredibly difficult to bottle my milk while my head was filled with doubt about whether my baby would actually get to eat it. I wanted to have the desire to pump for my baby, but the truth was, I didn't want to...and for that, I felt like a horrible mother. Every 2-3 hours was impossible for me. It was heartbreaking every time I sat down, but, with my mom's support and encouragement, I struggled through it, starting out about every 4-6 hours and then gradually increasing over the following week. As Mia made progress and as I felt all the love, prayers, and support pouring forth from our friends and family, it got a little easier. I cried less often and believed more that I was providing nourishment that my baby would actually use...eventually.

As each day progressed in the hospital, Mia became more "mine," more "our baby," rather than just the sick baby in the bed. Being able to hold her definitely helped strengthen my bond with her. It was a little difficult to maneuver her with all her tubes and cords, but as the tubes disappeared little by little, it got easier. By our last day in the hospital, her monitor cords felt as much a part of her as her arms and legs and I didn't have to think so much about them as I picked her up and arranged her in my lap.

As we left the hospital last night, I was a mix of emotions. I was beyond excited to be leaving the hospital with my baby, nervous about how Laci would react, anxious about taking care of two little ones, and maybe even a little bit distanced from my little Mia still. I had changed her diaper, fed her, taken her temperature, and rocked her plenty within the walls of the hospital, but it never felt natural in the way that it should feel when you are caring for your new baby. I always found it somewhat difficult to feel completely comfortable in Mia's rooms...there were nurses and monitors all around, other patients and their parents, uncomfortable chairs, and the too quiet atmosphere necessary for healing babies.

Being home is so much better than I had thought. Mia hasn't even been home with us for 24 hours yet and I already feel so much more connected to her. I held her on my chest this morning just because I could, because the chair was comfortable, and Sesame Street was on the TV, and Laci was laying across my outstretched legs. It was perfect. And that bond with Mia that I've struggled with for the past almost four weeks is here, and strong, and I'm sure will get stronger each day as I am able to get to know her better.

going home

After an extremely long day
of waiting on surgeons,
going over orders,
and making follow up appointments,
we are

finally

going

HOME.

due date

Today is Mia's official due date.  I always assumed she'd be born early, but I never figured things would turn out how they have.  Now, she is 24 days old, much healthier than when she was born, and if all goes well in the morning, will be coming home with us tomorrow.

Tomorrow.

I can hardly believe it even as I type it.  And I don't think I'll truly believe it until we're walking out of the hospital and taking our baby with us.

Her appetite has increased so much in the last couple of days and she has started gaining weight again.  Her broviac and ECMO sutures will be removed in the morning, and then we'll wait for the doctors to make rounds and give us the go ahead.  I can hardly believe how far she has come in the past 3 1/2 weeks, she truly is a miracle baby.  Other than her scars and her quick breathing, you'd never know what she has been through.

Tomorrow she will come home with us.  I'm looking forward to so many things about being home with her, but the best part will be Laci and Mia truly "meeting" each other.

Tomorrow will be the best day I've had in a long time.

***

Earlier today, I was reading the CHERUBS Facebook page which promotes research for congenital diaphragmatic hernia.  Families with CDH babies and children can post their stories and find support and information about the defect.  Some are stories of survivors, some are not.  Many of the stories tell of babies who have survived, but are struggling with various complications, or of babies who have spent months in the NICU and are still not able to go home.  Three weeks ago, I couldn't look at this page for more than a few minutes.  It was hard enough to face Mia's fragile condition without thinking about the future complications of recovery.  Tonight, I am able to read these stories and realize how truly lucky we are to have such a strong, amazing baby.

I never should have doubted her strength.  Less than a week before she was born, I wrote about how strong she felt when she kicked me from inside.  When I saw her struggling for life, I temporarily forgot what she had been telling me for months...that she is a strong-willed, feisty girl who can kick like the dickens.

As I type this, I'm sitting in the same hotel where we stayed our first night, 24 very looooong days ago.  It feels appropriate, like we have come full circle, and now that the circle is complete, we can walk away from it.  If I could go back and have a perfectly healthy baby, I would, and I'm soooo relieved for us to move on with our lives as planned.  But, I will also say, I am at least a little bit thankful to have gone through an experience like this.

I am thankful for the lessons in faith, prayer, and love.  I am thankful for learning more about myself and my abilities.  I am thankful for learning more about my husband and the family and friends in our lives.

I am thankful for having seen some very dark days so that the lighter days seem extra bright.  Tomorrow will be very bright, I'm sure.

still waiting...

There is only one reason for my lapse in writing:

Exhaustion.

Not to say that I'm any less tired tonight than I have been for the past several nights. But sometimes, like tonight, I'm able to trick myself into thinking that I don't really need to sleep. Some people call this a "second wind." I think by now, I must be into at least my ninth, or maybe my eleventh wind.

Mia is continuing to do well, but isn't gaining as much weight as the doctors would like before releasing her. She is getting much better at eating, doesn't spit up anymore than any normal baby, and poops like a champ. I started breastfeeding Mia on Saturday. I'm only able to do so about once or twice a day, but she is proving to be a natural at it, which is a relief to me. If all goes as planned, I'll be able to kiss the pump good bye. Mia has passed her hearing test and her carseat challenge, and Ryan and I have watched all four safety videos required by the hospital. We are all ready to go...except for the weight issue. I can't help but feel that if Mia were able to come home, see some real daylight, and eat on her own schedule that she would gain weight without any problems. But my head tells me to trust the doctors that have gotten her this far, so I will continue to wait as patiently as possible.

Each morning, as I walk into her room, I hope to hear that she is ready to come home. So far, I've been disappointed each morning. I try not to let it get to me, but my nerves are wearing very, very thin and I can't help but feel a little sadder each day she has to stay there. She has "graduated" to a different area of the NICU where babies with less serious illness get to stay. Unfortunately, her corner of this new room isn't near any windows and is directly under an air conditioning vent. It feels somewhat cavelike, not dungeon like, but definitely not the bright, airy space of her previous rooms. It may seem trivial, but to this photo-loving mama, the lack of light is a huge disappointment, not to mention a bit depressing for the mood.

Also depressing for the mood is how many babies are in and out of the NICU. After spending three weeks here, I've seen many babies come in, and most get to leave fairly quickly, but some will be here much longer than ours. My heart breaks for all of these parents, but the ones that really get to me are the new dads, whose babies have been born downstairs in labor & delivery, and for one reason or another, require some special attention. These dads follow their babies in, feeling the instant love and rush of becoming a parent for the first time. They are full of questions for the nurses, and concern for their babies. I wish they could just enjoy those first moments of being a new parent without having to worry about their baby being put on oxygen, or poked with needles. I wish they could bond without having to listen to a monitor beep intermittently and not understand what the numbers on the screen mean. And then there are the new moms, many who gave birth by C-section, who are wheeled upstairs hours later, in their hospital gown, for a peek at their new love. I wish it could be different for them. I have felt thankful many times that Mia is our second child...that we were able to experience the pure, uncomplicated joy of having a healthy baby the first time around.

***

Ryan and I pulled our trailer home on Sunday and have started "setting up house" in our shop again. All my previous efforts at nesting are currently in disarray and I have some serious organizing to do. I also have a two year old that needs to remember where she lives and where she is supposed to sleep. As I type this, Laci and I are at my mom's...Laci is sleeping next to me on the living room floor...we haven't actually made it "home" yet. Ryan is at "home," which has been a huge relief for our four-legged children, and he is making up for lost time on the house-building project. Because, you know, we kinda, really need a house...now.

This leaves me commuting to the hospital each day, and counting down the days until we don't have to live like this anymore. Of course, a countdown is a little difficult when you don't have a specific day you're counting down to...but, I can always hope that tomorrow will deliver a more definitive answer to the question: When are we going home?

mia's progress...and some other thoughts



~ smirking Mia...with a hiding broviac ~

Mia continues to plug along at learning to eat...she enjoys her bottles, but tends to fall asleep halfway through the feeding and I spend more time trying to wake her up than she does eating. Apparently, eating is hard work...I had no idea. The good news is, she has worked up to 45 mL tonight, and hasn't had any problems with digestion that would indicate an intestinal blockage. Since she is drinking enough milk now, her IV nutrition will be stopped tonight and hopefully her appetite will increase a little to allow for full 55 mL feedings. If she can handle all 55 mL, her broviac will be removed this weekend and she'll be officially needle and tube-free.

We don't have an exact day for Mia's discharge, but have been told that it will be "soon," most likely this week sometime. At this point, we just have to make sure she can eat properly and then we'll be on our way. As her discharge nears, I find myself with a whole new set of questions...mostly questions regarding her future health. Her left lung will need time to expand and develop completely, a process that could takes months, and in the meantime, will leave her more susceptible to infection, colds, and RSV. There is also the risk of her diaphragm rupturing or tearing and possible intestinal issues. And although these possibilities are small, they are still in my thoughts. I would hate to go back to where we were almost three weeks ago, though I'm sure I shouldn't worry as Mia has already demonstrated her strong will to not only live, but to thrive.

***

My head is so full of thoughts tonight that I can hardly keep them straight enough to type them all out. I feel so incredibly grateful for not one, but TWO, healthy baby girls, for a strong, healthy body that has not let me down, for my husband, for our families, for all the amazing friends we've managed to accumulate through the years. I have thoughts about what a true test of your limits can do for your outlook on life...how your priorities can be rearranged so quickly, and hopefully permanently. I know that months from now, I'll find myself exasperated at my two year old, and exhausted from my newborn, and I hope that I can remember how much worse it feels to sit alone in a trailer unable to hug or comfort either one.

I want to thank all of you who have been reading this blog, even the ones that don't comment. Telling our story online has felt strange at times...to be sharing private parts of our life so publicly, but writing has been so therapeutic for me. Knowing there are people out there who are interested in our girl has helped give me an audience to write to. I have always been a bit of a writer, keeping journals intermittently, taking writing classes in college, and of course blogging, but I haven't written this much in a long, long time. I know that once little Mia comes home and I get to care for my girls full-time again, there will be far less time for writing, musing, and blogging, so I am especially thankful for the time I have had over the past few weeks to "find my voice." I've been able to start writing in a way that I haven't tried in the past...raw, emotional, vulnerable even...I like it. And though I'm anxious to get back to much lighter subject matter, I'm glad to have bared my soul a time or two. Most of all, I'm glad to have this part of our lives documented so that I can go back and revisit whenever I need to remind myself that we, as a family unit, can overcome anything.

a healthier Mia

Newborns change so quickly. I remember Laci's face changing everyday those first few weeks of her life...Mia is no exception. After only 48 hours, she already looks plumper, pinker, and older. Mama's milk is putting some chunk in her cheeks and I like it.

She looks good...healthy.  The dressing on her incision was removed and I saw her scar for the first time.  It isn't terrible, it is large, but not terrible.  The surgeons did a good job.  I hope it fades as she gets older.  I know someday she'll grow up and want to wear a swimsuit, and I don't want her to be self conscious about it.  I hope she wears it proudly, as proof of her tenacity and strength.  I hope it helps remind her that she is capable of doing anything she puts her mind to.

We arrived this afternoon in time for her 2 o'clock feeding. I changed her diaper and she tried to poop on the me (not the first time she has done this), then I struggled to keep her awake long enough to get 30 mL in her (just about an ounce). The girl sleeps good...really good...like, halfway through the bottle she goes out and cannot be awoken despite my unwrapping her, tickling her, talking to her, even jiggling her around. I can only hope this continues when we're home. And while much of the milk dribbles out the side of her mouth, I have to believe that at least some nourishment is making it into her tummy. The proof is in her chubby cheeks and in her tiny, stinky diaper.

The attending doctor this week is the same doctor who was here when Mia was admitted. She is an amazing woman who worked all night and into the following day to help save our baby. She is pushing the surgeons to increase Mia's feedings a little quicker so the broviac can be removed. I think she knows how tough Mia is and she wants to send Mia home as swiftly as we want to take her.  I don't have an exactly timeline at this point, but I'm sure it won't be much longer now.

***

Last night, as we were sitting around my parents' backyard, visiting and chatting, watching Laci play with the dog, this whole experience seemed so far away. Almost as if it hadn't happened. As if the last nine months of being pregnant hadn't happened. As if I hadn't given birth to a baby who almost died and is now living in a hospital until she is well enough to come home. It might sound strange, but, for just a moment, it felt like our little family was still just Ryan, Laci, and I and we were visiting my parents for dinner like usual. Bringing Mia home will be a huge adjustment for all of us, an adjustment I have expected and prepared for, and one I'm ready to make. I'll be glad when I have a baby to hold to remind me that this was all real.

laci turns two

It's 11:00 am, Ryan and I are driving back down to Sacramento to check on our baby girl. It was nice to take a little break from the hospital, but I missed Mia and I'm sure she already looks different than when I saw her two days ago. I left Laci with strict instructions to stop learning new words and to stop growing up, just until we can all be back together. It shouldn't be much longer, so I don't think I'm asking too much.

Today is Laci's second birthday. It's a very low-key birthday for my girl, no cake, no candles, no party...but we did get a special pancake breakfast from Grammy this morning.  And besides, I'm sure she doesn't mind the lack of formal festivities. We spent the last two days playing and hugging, with Laci intermittently testing her boundaries with Ryan and me. We colored, watched movies (her favorite Tangled, and her new favorite Charlotte's Web), snuggled in bed, wrestled on the couch cushions, picked apples, and played with the dog and kitties. She spent most of the two days in her new Ariel nightgown, her preferred clothing of the moment, changing out of it only for bathtime or to put on her swimsuit. I think we will be stocking up on Ariel nightgowns so that we can cycle them through the washer now and then. Thankfully, her bladder symptoms subsided on their own yesterday morning, nothing a little extreme hydration couldn't cure.

We gave Laci her present a little early last night. Turns out, it's a big hit. She can't quite reach the pedals, but she'll grow into it soon enough. And for now, she's more than happy to "let" us push her around the yard. Ryan tried to put wooden blocks on the pedals so she could reach them easier, but she flipped out and cried until we took them off. She's a little picky like that...gets it from her mama.

We hugged tight before we left. I told her mommy and daddy have to go back to the hospital to help make Mia better so we can all be together soon. She's a smart little girl, I think she gets it. She may not understand the details, but she knows we need to go. I know she was sad because her mood changed as soon as Ryan started loading things into the truck, but she didn't throw a fit or cry...it makes leaving her a little less difficult.

 

***

As for little Mia, she is doing well according to the reports from the nurses yesterday. Her feedings were at 25 mL last night and she is tolerating it well, so we are expecting another increase to 30 mL today (55 mL is considered a full feeding for an infant her size). In an hour or so, we'll get to see her in person, feed and diaper her, and play parents to our newborn. I'll click my camera at her a dozen times, to make up for no picture taking yesterday, and we'll keep chugging along at this game until we get to the end.

about my little girl and my big girl

~ today she is starting to smell more like milk and less like a hospital ... I can't wait to get her home ~ 

Mia's daily updates are getting less technical...it is refreshing to not need a medical dictionary every time I write about her. Her Morphine drip was turned off completely today and she remains my sleepy, mostly content, baby. Her feeds were increased to 10 mL this morning, and then to 15 mL this evening. It will be baby steps for Mia to increase to a full feeding because of her developing lung and because of the risk of complications related to her diaphragmatic hernia and repair. The doctors are closely watching her for signs of reflux, as well as signs that her digestive system is working properly after its traumatic beginning. So far, Mia is doing great and I'm sure we'll be up to full feeds very soon.

Tonight, Ryan and I are staying at my mom's house for some quality time with our big girl. This is the first time we have left Mia overnight and I will not be there for rounds in the morning. It is a strange feeling, to be so far from her when she is so tiny. But, I am confident in the nurses' abilities to medically care for her, and in their genuine concern for her comfort and happiness. The nurses in the NICU are very special people, they really do treat your baby as their own...and it doesn't hurt that Mia is especially cute these days.

As it turns out, my big girl needs me most tonight. Tomorrow's plans will be sidelined by an unexpected trip to the pediatrician, as Laci is showing signs of a bladder infection. Certainly not a life-threatening problem, but also not what I expected to come "home" to. And, although it is adding to my nearly full stress load, I am glad I can be here for her. I'll be calling the NICU bright and early in the morning for an update on my little girl, and hopefully be getting an early appointment for my big girl. At the end of the day, I am hoping for two healing girls and if I'm lucky, a little nap.

~ the broviac ... and special snuggle time with Grammy ~

another day down...

Mia's first feeding went well this afternoon. She is only allowed 5mL every 3 hours to start with, so I'd say I have a bit of a head start on providing enough milk for her. Though she has been rooting around for food for several days now, she was quite frustrated when milk actually came out of the bottle. She couldn't quite figure out how to swallow and breathe at the same time, but I think she got most of the milk down. She gave us a couple of giant burps, cried through most of the process, and went soundly to sleep when all was said and done. Overall, I'd call her first attempt at eating a success.

When your baby lives in a hospital, you get to do things that are not your typical parenting duties. For example, when you change your baby's diaper, you get to show the nurse its contents and then it gets weighed. I'm really glad I don't have to weigh Laci's diapers. You learn to maneuver your newborn, along with various IV lines, tubes and monitor cords as if they are just another part of your baby. Today, I assisted the nurse in changing the dressing on Mia's broviac. A broviac is an IV that is inserted in her head behind her right ear and must be dressed carefully to avoid infection. I put on a hair net and mask and looked almost like a pro, except my only job was to hold Mia still and keep the pacifier in her mouth. The IV line is taped securely to her head to keep it from getting pulled out. The nurse had to remove the previous tape from Mia's hair and then reapply the new dressing, and it all looked pretty painful if you ask me. Poor little Mia was calm and happy with her pacifier until the final tape pulling, and then she let us know how unhappy she was. On the up side, Mia seems to calm down pretty quickly after getting upset...something I hope she continues to do once we are home.

Mia also had an MRI of her brain today. The official MRI report won't be available until tomorrow, but the doctors did not see anything significant that would be a reason for concern. This is incredible news considering the time she spent on limited oxygen after birth.

We are definitely on the downhill slope of our stay here at UCD, though I often feel like the end can't get here fast enough. I was brave enough to ask for a rough timeline today and we will likely be here another two weeks, depending on how well Mia tolerates her feedings. This is good news in that we are halfway done! However, I already know how slowly two weeks can feel when they are passed within the hospital walls.

One of the worst things about being down here, stuck in a sort of time warp, is that life continues to go on without you. I had to sit down and pay bills last night...little, expensive reminders that the world is so much bigger than me and isn't going to wait for me. My sweet Laci already seems to be a different person than she was two weeks ago. I am missing her daily changes. She will be two on Thursday, and I had so wanted the four of us to be together. We went to Toys R Us today and bought her a tricycle, I hope she likes it. I want her to know how much I miss her and how much I wish I could still be with her everyday.

I find myself in a constant battle over which daughter I should be with. I imagine every new mother of two feels this way at some point, as it is impossible to give both children your sole, undivided attention simultaneously. But when your children can't even be in the same room together, it feels so much harder. On one hand, Mia isn't so much aware of my presence as Laci is. On the other hand, Mia's condition is so much more critical than Laci's. How do you choose where to be? How do you decide which daughter needs your more?

Ryan will head home again tomorrow to work on the house...one of the few things I am happy to have continue on without me.

I am still taking one day at a time. Making plans more than a day or two in advance is still a challenge for me, although it helps to know that we have many, many days ahead of us with both our girls together. So, tomorrow, I am looking forward to a visit from my mom and grandma while Laci goes to visit her Nani E. I know that I will hold and feed my younger daughter and that, for the time being, my older daughter is being loved and well looked after. And I know these things are so much more than I could have hoped for just two weeks ago.

mia...two weeks old

Sweet Mia.

Two weeks old.

Ventilator and Repogle free.

Only one IV left.

Almost weaned completely from the Morphine.

Feedings start tomorrow. We'll try a bottle first, then use a feeding tube only if necessary.

She's come so far in such a short period of time.

Babies really are amazing in so many ways.

We are so lucky to have her.