Friday, November 28, 2014

Handling the latest Zoey situation

I'm not incredibly sure how I feel right now.  I'm so exhausted, but when I do manage to fall asleep my mind lingers on the fact that we're here and not at home.  

As my return to work approached, I was reassured over and over by the fact that I would be back for one full week, then just for two days and then have five days off with my girls and my family.  I would have one of my favorite weekends of the year to look forward to full of a day off with my kids, Thanksgiving dinner at our house, cutting down our Christmas tree with my in laws, and decorating our house.  Instead, Zoey was sick all day Wednesday, after a long night of little sleep the night before, and as she progressively got worse, our decision to take her into the hospital.  That was followed by spending Thanksgiving in the hospital, and now most likely all of today, with just the hope of being able to go home tomorrow.  

This is Zoey's first Thanksgiving.  In my last post I explained why last year's Thanksgiving was rough for me and our family so needless to say, I had high hopes for this year.  It's been a struggle since Wednesday for me to keep a healthy perspective on the way this weekend has been going.  Missing Thanksgiving, at our own house, knowing we have dishes and a turkey ready to be cooked and eaten was bad enough.  But then everyone that was supposed to come over and join us, had to find alternate plans as well.  Today we're missing out on taking Tera to cut down our Christmas tree.  And Zoey is missing out on her first time.  Does she have any idea that she's missing it? Of course not.  But I do.  Will there be more Thanksgivings that in theory have to go better than the last two? I'm sure there are, but that only somewhat tempers my sadness.  

Then of course there's the reason that we're missing all that.  Our sweet Zoey, who just made it out of the hospital September 15th, is now back in.  Hooked up to some of the same machines she was on following her dramatic entrance into this world.  She has to be suctioned every couple hours just so she can get some relief, and she hasn't been able to eat more than three ounces since Wednesday.  We have to wear masks, gloves, and gowns just to hold her.  I know she’s comforted being near us, but I feel she’s not getting as much as she could since our faces and scents are masked.  

And here’s where I feel truly conflicted.  My baby daughter is in the hospital.  My other daughter, while still having fun, is not with us.  Our Thanksgiving was not what we had planned.  But being here in the Children’s Hospital, you see things you wish didn’t have to exist.  A Thanksgiving meal provided by the hospital at no cost to ALL the families that are here instead of at home.  The kids that aren’t here for just a few days.  The kids who very well may spend Christmas here too.  The parents who know and understand more about the medical field than anyone who’s not in it should.  It’s heartbreaking and at the same time reminds me how very lucky we are.  

One of the things that I’ve really had to learn since having children is to let go of expectations.  That things are not going to go as planned and that it’s not the end of the world, I just have to adapt.  When we realized that we weren’t going to be home on Thursday, I wanted to cry.  All our plans, our meal, our traditions, were changed.  But if we get to go home tomorrow, we’ll try and have our meal on Saturday instead.  We won’t be going to cut down Christmas trees with Tom’s parents and my brother in law and sister in law.  This would have been Zoey’s first time, we were going to watch Tera ride the ponies (which she was previously afraid to do), pick out a beautiful tree and come home and start decorating.  Instead they’re going to take Tera, pick out a tree for us, and I’ll have to try and decorate on Sunday or during the week.  I absolutely LOVE decorating our house for Christmas so I kept thinking that maybe our decorations wouldn’t be out as long as they usually are if it takes me longer to get it done.  But maybe I’ll just leave them out longer after Christmas if I still feel that way.  

Letting go of expectations, plans, and ideas is truly a struggle for me.  It causes real anxiety, not just stress.  I have coping mechanisms, but when I’m running on very, very little sleep, I’m concerned about the health of my somewhat fragile child, and missing my other sweet girl, it can be a little more difficult to focus on those things that might contribute to my improved mental health.  

I’ve been wanting to find the time to get all this out in hopes of it relieving some of the stress of thinking about it every time I try and sleep and now that I have, I’m already starting to feel a little better about it.  The rest of my day consists of obsessively watching Zoey’s monitor, drinking obscene amounts of coffee (at 10:30 I’m on my second cup), watching some movies, hopefully showering once Tom brings back some clean clothes, and maybe doing a little more online Christmas shopping (I’ve already placed orders at Carters and Old Navy for the girls).  Sounds delightful doesn’t it?

I’ll post any updates later on Facebook, but with any luck I won’t have time, or the need, to post again here the rest of the weekend.  Happy holiday weekend my friends and loved ones. 

Sunday, November 23, 2014

One year ago...

One year ago, my heart broke.  At that time, I felt like it was ripped apart, never to be mended.  The pain was unbearable and the kind that you think could never possibly get better. 

I debated for a long time after that whether it was something that I wanted to share.  But now, one year later, I feel okay about sharing it.  It is an important part of my life, of our lives as a family, and I think it’s time. 

Last November, the Monday before Thanksgiving, I had a miscarriage.  Most of you had no idea.  It was not something I shared with hardly anyone outside of our immediate family and friends.  It was too painful and I didn’t want to talk about it, but it happened. 

I found out in mid-October that I was pregnant.  We were excited, but I knew I would be a little more stressed during the pregnancy because of what we had experienced with Tera.  We knew we would ask for all the non-invasive prenatal tests because while we wouldn’t have changed our decision not to know with Tera, we had to know this time.  We needed time to emotionally prepare ourselves if we were told we would have another child with special needs.  I had a new doctor that I really liked and made an appointment to go in when I thought I would be eight weeks along.  When we went in for my initial visit, my doctor couldn’t find anything on the ultrasound.  I immediately panicked.  After some searching, he found the baby, but the measurements didn’t put the baby at eight weeks, it was more like five and a half.  Since the baby was so small, there wasn’t much the doctor could tell us, including showing us a heartbeat, but reassured us that this didn’t mean anything was necessarily wrong, just that our original estimate was off.  He told me to come back in two weeks and by then he would have a better idea of what was going on.  He told us to be cautiously optimistic.  I went back two weeks later and the baby had grown, but the doctor wanted me to get an ultrasound at one of the ultrasound facilities to get a better picture than he could get in the office.  I made an appointment for the Monday before Thanksgiving at the Arlington Heights office. 

Tom couldn’t make it to the appointment and I told him that I really thought everything would be fine, and that I would go by myself.  I went in for one period at work, then headed to my appointment.  When I got there, they got the ultrasound set up and the technician found the baby, but realized that it hadn’t grown.  She left the room to go get the doctor and I started to cry.  I called Tom and told him what was going on and that the doctor would be in soon, but that it wasn’t good.  When the doctor came back in, he had to deliver the news that ripped my heart apart.  The baby had stopped growing, and it was no longer a viable pregnancy.  I left the office and tried to explain to Tom what had happened, but I could barely speak.  He left work immediately to come and get me.

In the meantime I called my mom, the only other person in the world I could talk to at that minute and bawled while people walked past me, as I waited for Tom to come and pick me up.  It felt like my world had ended, and the mere thought of what was going on sent me into hysterics again.  I called my doctor and he told me that it would be in my best interest to get a D&C the next day to help prevent as much discomfort as possible.  I was scheduled for the next morning.

When Tom finally arrived we drove home pretty much in silence.  I couldn’t bear to tell anyone so once again he had to share the news with the few people that we had already told.  I didn’t really want to talk to anyone about it, but a friend of mine (who had also had one) called me that afternoon to make sure I was okay and reassure me that as awful as I felt at that moment, it would get better eventually. 

I spent the rest of the day and most of the night in bed and then the next morning Tom took me in and it was over.  We were supposed to have Thanksgiving at our house and while everyone would have been more than understanding if we didn’t, it felt like it would be worse to spend the whole day just thinking about it so I insisted we keep it the same, and I don’t regret it.  The rest of that weekend was a series of ups and downs.  I realized that maybe at some point, I could think about it and not feel like all the pain of the world was inside me. And I can honestly say today, that while I will never forget that I at one point had another baby that I never met, I don’t feel nearly the sadness that I felt then. 

Before the procedure the doctor asked me if I wanted them to do a pathology report to see if they could determine what had caused the miscarriage and I said yes.  Again, after Tera, I couldn’t handle not knowing.  If this baby had also had Down Syndrome, I don’t know how we would have felt about trying again.  I can’t even begin to imagine my life without Tera, every part of her, but it was something we would have to think about. 

While we waited for the results, time passed and things gradually felt more normal again.  I began to find out that more and more people I knew had had miscarriages and at least it made me feel not so alone.  Eventually, my doctor called and told me they had the results.  The baby had had trisomy 7; a third copy of the 7th chromosome.  Down Syndrome is a third copy of the 21st chromosome.  The similarities struck home, but I tried not to dwell on it too much. 

Still, when I became pregnant with Zoey about a month and a half later, my first reaction to the pregnancy test was to burst into tears.  All those emotions that had started to subside hit me at once and I was terrified of being pregnant again.  I wish I could say that my third pregnancy put my mind at ease, but it was not to be.  I had minor complications with her from the start, ended up finding out I had placenta previa, that resolved and I simultaneously found out I instead had vasa previa, and one week later Zoey was born.  

The due date for my second pregnancy was July 12th, Zoey was born on July 14th
It’s hard not to think about that time period and wonder if it wasn’t really all just a dream (or nightmare).  So much has happened since then and the only thing that truly makes me feel any better (and all the platitudes do not) is knowing that all along we had only planned on having two kids.  If everything had gone differently the second time, I wouldn’t have my sweet Zoey. While it’s difficult not to wonder what our other baby would have been like, I know that I have two of the sweetest, most challenging, awe inspiring, beautiful daughters imaginable and for that I will always be eternally grateful. 

Tuesday, October 21, 2014

The myth of the perfect parent

Somehow even with being home with just Zoey, I haven’t found much time to post.  It’s partly a lack of sleep and not being able to focus on much that requires coherence and partly trying to finish up some photo projects that I want to get done before I go back to work.  Ugh.  Just the thought of it is starting to give me anxiety.

I knew it was going to be harder coming to grips with returning to work after Zoey than it was with Tera.  It’s mostly because I have a lot less time with Zoey (with Tera I had close to six months because of summer), but a lot of it is that more of that time than I had ever wanted was spent with her in the hospital; it’s just not quite the same thing. 

So right now I’m dealing with the anxiety surrounding my return to full time working mom, and also about a million other emotions.  I find my days now, busy, but not packed.  Our evenings exhausting (mostly due to lack of sleep), but not overwhelming.  Our weekends almost completely enjoyable because so much of what NEEDS to be taken care of is done so during the week.  When I go back to work, that all changes.  In the mornings, we’ll have to get both Tera and Zoey ready and out the door at a reasonable time.  After work we’ll be trying to fit in workouts, a somewhat healthy dinner, more than likely work that didn’t get done during the day, preparing for the next day, and hopefully at some point enjoying some time with the girls.  The weekends fortunately during the late fall and winter are a little less hectic as far as plans, but will still have to include grocery shopping, other extraneous errands, and all the other stuff we won’t have time for during the week.  We’ll make it work, we always do, but I’ll be more stressed that I’m missing out on quality time with my family and trying to balance work and home responsibilities.

I’ve come across a few articles recently, since I actually have some time to read right now, about being the perfect parent.  With Tera I was always worried that we weren’t working on enough strategies or that I wasn’t researching enough about new alternative ways to help with her development and/or health.  I still think about it.  But now with Zoey, for some reason I feel calmer.  I worry that we’ll be overwhelmed when we’re both working, I worry that money will be too tight with them both in daycare, I worry about them getting sick since I’m using up all my sick time being on maternity leave, and I worry about a million other things like most moms.  But still, in the midst of that, I feel calmer.  And the weirdest thing?  For all my musings on how I could never really believe that I was a mom with Tera, now that we have both Tera and Zoey, I feel like a real mom.  But am I a good enough mom?

It is definitely a struggle to feel even adequate when you can’t help but be bombarded by social media’s portrayal of all the things you COULD be doing as a parent to make sure your kids are geniuses and healthy both physically and emotionally.  A perfect example: I love Pinterest.  I know it’s not all realistic, but I love it.  When Zoey came home I had all these great ideas saved for siblings pictures.  We have a really nice camera and a new lighting kit courtesy of a great friend, and I just wanted to capture these once in a lifetime pictures of Tera as the big sister and Zoey as the infant baby sister.  The problem? Tera doesn’t sit still.  She doesn’t smile on command.  Zoey is past the point of being pose-able because she’s not actually a newborn, but she’s nowhere near capable of holding her head up or anything even close to that.  And Tera is too unsteady, and let’s face it, she’s three, to hold Zoey without one of us right next to her.  So while we got a few really great ones of the two of them, I have to come to grips with the fact that most if not all of the ideas that I saved won’t happen.  It’s just not realistic. 

And so when I came across this article, it struck home.  Tera has finally started watching TV and movies and you know what? It’s amazing.  I know we should be reading or creating something incredibly crafty with her, but the kid is at daycare from 7am until about 4pm and in between those hours she spends two and a half hours at preschool.  She’s getting plenty of stimulation.  On top of that we’re almost always sitting with her.  There are many weeks when her dinners consist of either peanut butter and jelly or chicken nuggets, but she always has at least one vegetable and/or fruit.  When we go to Starbucks with her, she gets a donut, but she’s never had candy (at least not with us) and we don’t give her cereal.  Half the time we have to bribe her with vegetables to get her to eat meat.   We use Tera’s iPad as an incentive to get her to follow her morning and nighttime routine, and sometimes to go potty.  Oh well.  If you want to judge me, you come on over and see what it’s like to get her to take a bath, comb her hair, and brush her teeth. 

But, we love our kids.  They’re well taken care of, we eat healthy but also allow Tera to have treats. They will always know they’re loved but will learn to understand that our undivided attention all the time isn’t realistic.  We will spoil them because we can, but when they are old enough to understand, they will have responsibilities that will be completed without promise of a reward.  We will always support them, but they will have to do their best even in difficult situations.  It will be hard watching them deal with disappointment, but I’ll be damned if they don’t learn how to do it with grace and dignity.  Do I think any of these things will be easy? Probably not.  But we chose to bring them into this world and if we are going to expect them to give their all, then we owe them the same. 

I didn’t have a perfect childhood, few people do.  But I always knew, unquestionably, that I was loved and even when my parents didn’t agree with me, they supported me.  All I can hope is that when they look back on their childhoods my daughters can say the same.  


Wednesday, October 1, 2014

Hey Down Syndrome, sometimes I still struggle with you...

A few days ago I posted on Facebook that Down Syndrome and I were once again at odds.  You see, Tera's extra chromosome and I have a love/hate relationship.  I love my daughter and so in part, I have to love her having DS as well.  It's a part of her.  But what I don't have to love is the challenges that it presents to her.  Do I think it will make her a stronger person? Yes.  Do I think she will always overcome those challenges? Yes.  Do I have to like that she has so many challenges already? No.  Do I think it will make me a better mom than I would have been otherwise? Not always.  It's hard.  It's really hard.  For her and for us.

I don't like that she is three and a half and still in the 2's room at daycare.  But she hasn't quite mastered the prerequisites for moving up yet.  I don't like that throwing objects, all sorts of objects, is still a problem that we face with her.  I don't like that she is still struggling with potty training.  I don't like that she sometimes seems to lack the ability to refrain from hitting people when frustrated.  I don't like that she is unable to communicate all her wants and needs verbally to everyone.  And I don't like that I don't have the answers to fixing these problems.

Tera had a particularly difficult week at preschool last week.  There isn't always an apparent reason when these bad weeks happen which can make dealing with the situation all the more difficult.  Of course we could chalk it all up to her still adjusting to Zoey and not being the center of attention anymore, but she's been acting pretty normal at home (normal meaning just that, not perfect but not making me pull my hair out).  We've been communicating with her teacher at preschool and her social worker and we think we might all have a plan of action to help Tera be more successful.  Because I'll be honest, when she has a bad day at school, I'm not angry with her, I'm heartbroken.  Everybody has bad days, little kids included.  They probably actually have more than adults because they struggle with trying to understand why they feel a certain way and then even if they know, how to express themselves appropriately.  Tera doesn't necessarily understand all the various feelings AND she lacks the ability to cope with them because of her communication skills.  She can't tell me (yet) that she pushed a kid because they took something from her or that they were getting too close to her.  She can't tell me that she didn't sleep well because of bad dreams and that resulted in poor decision making.  I am not saying DS is responsible for all her bad behavior, it's not, but it has hindered some of the skills and behaviors that are necessary for acting more appropriately.

What does make me feel better is that she is learning these skills.  At school they talk about different feelings and they work with her on the best ways to express those feelings.  They ask for our input on what works at home and how they can implement that in the classroom and we do the same thing.  It really does take a village with that kid.

So Down Syndrome, here we are.  I love that you have brought awareness and more love than we ever imagined to our family.  But I don't love that my daughter has to work so very, very hard for so many things that other kids, and parents, take for granted.  I love that you have made me cherish and appreciate so much more, her accomplishments.  But I don't love that it takes her so long to reach some of them no matter how hard she tries.  I know you're not going anywhere, and some days, weeks, months, and years that will be harder for me to accept than other times.  It's still hard to see Tera around other typical kids and know how she's different from them.  But it also makes me so proud to see how far she's come.

Today marks the first day of October and the beginning of Down Syndrome Awareness Month.  This is the first year since Tera has been born that I won't be in the classroom to spread awareness to my students.  But I can continue doing it through this blog and the girls' Facebook page.  I am going to say right now that I'm admitting my lack of time right now and not even going to try to promise 31 days of blogging this year, but I will try to post something every day for the rest of the month to show my love for Tera and her extra chromosome, and all the other very special people and families we know because of it as well.  So please check in daily to see what you might learn and consider sharing some of that information with the people around you.  It's a lot harder to feel scared and uncomfortable with something you know more about and that's what this month is for.

Wednesday, September 24, 2014

Our girls. My heroes.

It has now been one full week since our littlest girl came home and I can honestly say I've never been so happy to be so tired.  I am calm, I am happy, I am exhausted, and I feel complete.

Zoey Theodore Theodore, born July 14th, 2014, weighing 2 pounds 8 ounces and 14.5 inches long came home on September 15th, 2014, weighing 4 pounds 14.5 ounces and 16.5 inches long.  And after one full week at home, weighs 5 pounds 9.5 ounces and is loved more than one could possibly imagine by mom, dad, and most definitely by her big sister Tera.

Everything that I hoped would be true about Tera's love for her baby sister, has come true.  She absolutely adores her, showers her with kisses, and is more gentle than she ever has been.  There hasn't been much evidence at all of any jealousy, and while there have definitely been some adjustments for us all, I can honestly say my life finally feels complete.  We have two of the most beautiful girls in the world that have each had to overcome more obstacles than any little person should have to.

Tera was my first hero.  That kid loves like you wouldn't believe.  Her empathy is incredible, Her energy is unbelievable.  Her tenacity is enviable.  She tries hard at everything she does and rarely gets frustrated.  As much as we try to treat her like any other typical kid, we sometimes forget that she isn't typical.  She does have to try harder for a lot of things.  And there are certain behaviors (mostly standing/sitting still, throwing, and even hitting) that while she has some control over, are oftentimes the result of her immaturity and sensory issues.  We still discipline her, we talk about her actions and how they upset us (this is where her empathy is key to getting a desired reaction), and we try to find positive ways to let her work out her inner frustrations.

At age three, she's already had two sets of tubes (among various other procedures) , pneumonia five times. has gone literally months straight being sick, been catheterized at least three times that I can remember, had a swallow study, gets blood drawn every four months, sees five specialists, took a pill every morning for almost two years, wears orthotics, and works so very hard at every word she says.

Zoey is my second hero.  She arrived way to early, through no fault of her own, and has had to fight ever since then.  She already has two scars on her side from the chest tubes they had to insert when her left lung collapsed twice.  She still has to work to drink from a bottle and is sometimes still just too tired.  She is on a diuretic to keep fluid away from her heart until her PDA closes and up until yesterday was also on extra potassium because hers was being depleted by the diuretic.  She's on a pill for her thyroid, and also a multivitamin.  We also still have to fortify her milk with extra calories so she can keep gaining weight, but we suspect that might be contributing to the what seems like an excessive amount of spitting up which wakes her up constantly.  She has to work just to keep herself warm.  We also have to work on physical therapy strategies with her since she still isn't even supposed to have been born yet.  She's a very calm baby, and while she grunts a lot, she rarely cries.

Life is not easy for us; it probably never will be between these two kids, but as I constantly try and remind myself, things could be so much worse.  All things considered, we are lucky.   I know I don't and won't always feel that way, but for now...

Our girls.  My heroes.  

**This took me three days to finish completely and today was a little rougher on the Tera front.  Hoping to have a new post tomorrow on what's going on with my feelings about the DS situation and my sweet girl.  Just a warning so you're not too confused if there's a sudden change in the mood and tone of my posts...

Monday, September 8, 2014

Could the end really be in sight?

Today was the day I was scheduled to deliver Zoey.  Eight weeks to the day after she was actually born, and still three and half weeks before her due date.  I'm not sure I can accurately describe how I feel about this.

It's been 56 days since the chaos began and I'm almost hesitant to write this, but we should be very near to the end now.

She's still taking all of her feedings by bottle and has been allowed to eat ad lib; meaning she can take as much as she wants (currently that's averaging out to about 50 ml or 1.7 ounces) and as of today, when she wants.  She won't be allowed to go more than four hours at a time, but she won't be held to the three hour schedule she was on.  This should help with her alertness during feedings making them quicker and usually not as sloppy as when she's still half asleep.  The truly amazing thing for Tom and I is that for the most part, she takes her bottles in under 20 minutes; and the nurses told us that is kind of slow.  Tera was averaging around 45 minutes for each feeding even when she was not a newborn.  Her low muscle tone, tongue, and lack of coordination made each feeding long and messy and they exhausted her.

The only thing currently keeping her in the hospital is her inability to maintain her own body temperature.  They've tried twice to put her in an open crib for a day or overnight and both times her temperature dropped below where they want it.  They also found last week that her red blood cell count was low.  Apparently this is not abnormal for babies at one to two months, but because most babies aren't in the hospital, it isn't checked and it's not of any real concern.  In Zoey's case though, it could be contributing to her inability to keep her temperature up.  So today they decided to give her a third transfusion to see if that helps.  If it does, she'll have to maintain her temperature for at least two days and then we are out of there!  If all goes well, and I've confirmed this with the doctor and her nurse, it is feasible that she could be discharged by the end of the week.  The two possible hiccups would be if she doesn't make it in the open crib, because then they would have to wait at least 24 hours before they try again, and if she didn't pass the car seat test.

For those of you who have never had a child in the NICU, most babies that have even brief stints there, have to pass a car seat test.  It is basically to see if they can maintain breathing correctly in a car seat.  They usually place them in there for 90 minutes and they can't have any oxygen desaturations (or possibly just any that they can't recover from on their own) during that time.  In the meantime she will receive all her vaccinations, and I was happy to find out, because I believe very much in vaccinating my children, that due to her premature status she is eligible to receive the RSV vaccine in November.  As a mom with two children with compromised lungs, I will do anything I can to help prevent them from getting a sickness that could put them at an even greater risk.  She will also have the echo of her heart repeated and the head ultrasound repeated.

On Sunday we brought Tera with us for a while so she could see Zoey for the first time without her oxygen and NG tubes and for the first time ever, I was able to hold Zoey in my arms while Tera sat next to me and it was amazing.  I couldn't believe I had both of my daughters so close to me at the same time.  Tera did great and very gently kissed her baby sister's head several times and showed us how little she is.

And so as it gets closer and closer I get more nervous that something will prevent her from coming home.  We've been waiting for this for eight weeks and while it might seem to some people that if we've waited this long already, what's one or two more days.  But we've already waited 57 days.  I waited nine days just to hold my newborn baby.  She was on oxygen for 21 days.  On a feeding tube for 49 days.  Every day has counted so far and I don't want to count even one more.

Her room is ready. We think Tera is ready.  We are more than ready.

Monday, September 1, 2014

And the weeks keep passing by...

So here we are, seven weeks into this crazy little adventure of ours.  Zoey is growing steadily and is up to a whopping four pounds and four ounces now and, I can't remember if I mentioned this last time, but our little peanut had managed to grow two inches in five weeks! She may be facing quite the opposite clothing dilemmas that her older sister has.

And now we just continue to wait.  Tom and I both kind of anticipated this being a difficult part of this experience because while we are beyond thrilled that there is nothing as serious as the first week to worry about anymore, every day it seems we should be ready to take her home.  She took all eight of her bottles in the past 24 hours which is huge for her.  Friday afternoon after we left they attempted to move her to the open crib, but the next morning, despite several layers of clothes and blankets, her temperature had dropped and she needed to be moved back to her isolette.  It was difficult to hear that it had stressed out her little body so much, but the fact that she is so close to all of her bottles is incredible.  Being able to take all her feedings by bottle is a combination of a skill and energy and I thought for sure that would be the later of her two last milestones before being released. On the plus side, as long as she's gaining weight, her temperature will start to happen on its own.

 Her updates from the doctor each day are pretty boring (which we're more than okay with) and mostly include increases in the volumes of each feeding, increases in the extra calories they're adding to her her milk, how her thyroid is responding to the current dose of medication and whether or not it needs to be adjusted, and what tests they will only need to repeat one more time before she goes home.  As of right now, her head ultrasound from last Friday looked good and they will check it one more time before she gets discharged to make sure the clots from the bleeding are dissipating and they'll repeat the echo of her heart one more time before she gets discharged to see if she needs to be followed by a cardiologist to monitor her PDA.  

We are amazed more and more each day, as are her doctors, at how well she has done compared to how rocky her first week was.  And so we just wait.  And I HATE waiting.  I'm no good at it and it's getting harder and harder as each day goes by to know that seven weeks have passed and she's still not home.  Not that we were expecting her to be home by now, but still, the waiting sucks.  Her room is finally ready and all that it's really missing, is a sweet little girl to occupy it (well, a sweet little girl other than her sister who likes to play in there).

It's just as hard to leave Tera in order to be able to see Zoey.  She's done much better these past few weeks both at home and at school, but I can say there is definitely a level of guilt every time we leave her to go to the hospital.  Today I did something I haven't done in a long time; I rocked her to sleep for her nap, and I loved it.  I haven't done it in so long and it felt so good to just let her sit in my lap and fall asleep as I studied her face.  The same way I did with Zoey this morning and the way I used to all the time when she was littler.  As she pulled my arm around her my hand rested on her heart and I felt all the swishing it does through the hole that is still trying to close.  I focused on her tongue resting so familiarly on her bottom lip and realized how aware I am of its absence on Zoey.

I was so worried for so long about if it was possible to love another child as much as I loved Tera. I was especially concerned because of Tera's special needs. But now that Zoey is here, I find myself feeling like I love Tera even more than before, if that's possible, and Zoey just as much.  Which is part of the reason why this whole process is so completely exhausting.  To see one of my girls means having to leave the other one.  I'm constantly torn and it's getting to be unbearable.

Next Monday is the day I was scheduled for my c-section originally.  I've informed Zoey she needs to focus on getting all her skills in order by the end of next week which is when she would originally have come home (probably).  We'll see how she does...
Zoey at 7 weeks
Tera at only a few days

Sunday, August 17, 2014

It's already been/it's only been one month?!?!

Thursday night I felt like I lost my ability to wear the "I'm totally fine and dealing with the fact that my one month old daughter hasn't even been home yet and won't be for at least a little while longer" face.

I've been hanging in there the past couple of weeks and wearing a very brave face and attitude that this is the new normal.  Every day I head out of the house to the hospital and make the familiar trip out of Mundelein down to Evanston, wind my way up the parking garage, stop for my coffee in the Atrium, head down the winding halls to the Women's Hospital, check in, wash hands, and finally see my sweet baby girl. I don't wake up, get out of bed, and turn the corner into the next room to find her laying in her crib.  I pull up a chair next to her incubator, pop open the two little doors that connect me to my daughter, and lay my hand on her head.  I watch the clock to decide when to pump and when she will be due for her next feeding so I can hopefully do it or how long I can hold her before they have to take her vitals again, plan when to eat, pump next, and what time I will have to leave depending on Tera's schedule for the day.  And then I leave.  I leave my four week old, not even to term newborn daughter in an incubator, and I go home without her.  I go home to my other daughter who has only met her baby sister twice.

And Thursday, for the first time in at least a week, it was too much.  The endless amounts of crap that are accumulating around our house was too much.  The clutter and projects we have planned was too much.  Tom's work schedule was too much.  Missing my baby girl was too much.  Realizing that I have only one daughter at home was too much.

I hate, more than I can express, having to leave one daughter at the hospital in order to see my other one.  I hate having to balance all this shit and feel like I'm barely holding onto to life.  I hate feeling like a shitty mom to Tera when she wants to go outside but we're utterly exhausted.  I hate that Tom can't go work out which helps alleviate all his aches and pains.  I hate that we're spending money on gas, parking, and hospital cafeteria food.

And despite all the things that are bothering me now, I shouldn't complain because Zoey is doing better than we ever could have expected by now.  She is officially one month old and it seems like the longest and shortest month at the same time.  I can't believe it's been a month since I went to the hospital not really expecting to meet my newest daughter that same night.  From a rocky first week to being completely off oxygen, taking at least three feedings a day by bottle, wearing actual clothes, and taking her first field trip to the family visiting room, she's met and blown past every new challenge given to her.

And while I could not be more proud of my two daughters and their fights for life, I still occasionally drift back to the thought of: why? Why do my girls have to work so hard? And why do Tom and I have to sit by and watch them fight for everything?  I know it could be worse and believe me when I say I think of that constantly.  I know there are people worse off than us, but at the same time I think there are so many people who haven't had to experience all of this.

So as we move past month one, we are in a much better place, but it's not much easier.  The worry and stress are less, but the pain of walking in and out of that hospital day after day and coming home without her is still very real.  Today Tom coined the term "normies" to refer to the people who actually get to leave with their babies when they get discharged, something we won't ever know.  And that will be a little easier to deal with once we actually get to take her home.  But for now, we wait...

Friday, August 8, 2014

Progress for my girls!

I'm as happy as I can be right now considering my littlest baby is in the hospital instead of home, my bigger girl is exhausting, and the addition to our house has been put on hold.  But seriously, all things considered, we're doing pretty well.

My poor husband is swamped at work again and we're pretty much exhausted and running on caffeine (and alcohol sometimes).  Our life is not perfect, or easy, but we're getting by.  This is a drastically different frame of mind from where I was about a week ago, so I guess that means I'm making progress too.  High five to me for not losing my marbles permanently (although this a constant stage of change for me...).

So why am I feeling so much better these days despite the fact that things in general kind of aren't going our way? Because my girls are making progress! Both of them.

We'll start with Tera since she was the first major obstacle we had to overcome.  The week after Zoey was born, which seems like an eternity ago, Tera went from inconsistent potty training to flat out refusing to go at home.  I would ask her if she had to go, knowing she was dry, she would say no, refuse to try, and then moments later go in her diaper.  We were so tired and stressed about Zoey we didn't have the energy to try and enforce it, but at the same time I felt myself getting more and more frustrated at the situation because we knew she could do it.  Then last weekend we were home most of the day on Saturday and she wanted to put on underwear.  We didn't ask, but she pulled them out of her drawer and wanted them on.  And after prompting her every 15 to 30 minutes she made it the whole day with only one accident.  She had also woken up dry and made it through her nap dry (though I admit we were not confident enough to have her nap with underwear, we did put a diaper on her).

Sunday she spent the morning with Tom's parents while we went to the hospital, but when we got home, she put on her underwear again, and again did great with only one accident.  We knew the work week would be more difficult because she's not ready to be in underwear full time yet, at least not without several clothing changes, at daycare.  But each night she's come home, she's changed out of her diaper and has done really well.  I'm so proud of her progress and hope that we might finally be turning the corner on this miserable experience.

She's also working really hard on speech despite everything else that is going on in her life right now.  She's constantly trying new words and always willing to work with us on her pronunciation.  That kid's work ethic amazes me to no end.  Of course there are times when she doesn't want to cooperate, but considering that she has to work so much harder than many other kids her age on every word she says, her effort is nothing short of inspiring.

And then there's our little Zoey.  Our fighter, our little overachiever; she even wanted to be born earlier than she should have.  This little girl has gone from a shaky start her first few days, to knocking out obstacles left and right.  She's breathing on her own with little to no issues.  She's gaining weight.  She has a heart murmur that is still there, but doesn't seem to be affecting her.  And as of yesterday, at 32 weeks gestation, she's in real clothes in room air, and we attempted a bottle for the first time!  Her eyes are open more and more, she loves to snuggle up on me (and I won't lie, I'm a pretty big fan of it too), and those little lungs that were such an issue for her first week, can produce a pretty impressive cry when she's not happy about something. 

I really don't think I could be more proud, impressed, or in awe of the strength and tenacity of my two daughters.  They really are my heroes.

That being said, I will admit my heart hurts when everyday that I'm at the hospital (which right now is six days a week), there is a family in the elevator that is going home. I know our time will come, but the fact that we haven't and won't ever bring a baby home with us when I get discharged still stings.  The fact that we know the terminology and ways of two different NICU's, sucks.  The fact that I walk by Zoey's room every day and know that while she's in this world with us, but not at home with us, hurts.

But I've gotten to the point, and it was hard the first couple weeks, where I know things could be so much worse.  We are lucky.  Maybe not as lucky as some other people, but lucky all the same.  We have two beautiful daughters that while not completely healthy, are healthy enough.  We have family and friends and coworkers who have shown incredible amounts of support and love for our girls, and us.  We've had people sending gifts for both Tera and Zoey, cooking for us, helping us around the house, watching Tera, and just in general checking on our overall well-being.

At the end of this day I can say that I had time snuggling with both my girls (Tera's time was a bit shorter because as you know, she can't sit still that long) and all things considered, that's not a bad way to spend a day.

Sunday, July 27, 2014

Tough girls

Before I got pregnant with Zoey, I truly wondered how I might love another baby as much as Tera.  Not only was Tera my first child, but because of all her special needs I felt like Tom and I had a bond with her that might not exist with another child.  Enter Zoey at twelve weeks premature.  Maybe the universe was trying to help me out with my fears and gave me another special child; whatever the reason (and believe me, I keep trying to find one), I am reassured that my love for Zoey is completely equal to that for Tera.  I could have done without the equivalent concerns, but apparently I don't get a say in that particular situation.  

We've decided that for many reasons, it would be best if we tried to not go to the hospital at least once a weekend.  This weekend, that meant Saturday.  And while I shouldn't complain because Tom has had to miss several more than me, I had to admit, not seeing her for an entire day for the first time since she's been born was difficult.  I missed being reassured by just seeing her that she's still real and that she's okay.  

When we did go today, I was able to hold her for only the second time in her short little life so far.  It was one of the best hours of my life just feeling her little heart beat against mine, hearing her breathe and feeling her hand against my chest.  But at the end of that hour I had to hand my sweet baby girl to a stranger and leave her and that is one of the hardest things to do.  

When I was home with Tera later, I just kept looking at her and almost crying with the amount of love I felt for her.  She gave me kisses and hugs and a few times I just watched her movements and realized how far she's come.  With all the struggles that she's had, it's much easier to appreciate all the progress she's made and all the work she's put in to it.  

And at some point tonight I realized, my girls are fighters.  They are tough, they are resilient, they defy odds, they surprise everyone around them with their tenacity, and they don't give up.  As I sat with my own mom this morning, crying once again over the situation and the parts of it that are particularly hard to deal with right now, she said that she raised a strong girl, but that didn't mean I couldn't or shouldn't ask for help when I needed it.  And as the day has gone on and as I sit here and write this, I am reminded once again that the women in my family are tough, we are strong, and we are fighters.  We fight to maintain our sanity, we fight to keep our families safe and healthy, we fight for our children, and we fight to survive when seemingly insurmountable challenges are thrown at us.  We don't always do it calmly or without tears, but we do it.

And that is a legacy I am more than happy to have passed on to my own daughters.  I would never choose these lives and these challenges for them.  Do I think it will make them stronger? Probably yes.  But it doesn't mean I wouldn't take away all their struggles if I could.   I would rather Zoey be at home than in that hospital.  I would rather Tera not have to work so incredibly hard to do so many things.  But shit has happened and there is nothing we can do about it but try to accept it and move on. 

It is most definitely not easy.  These past two weeks have been two of the hardest weeks of my life.  But I know that I love my daughters more than I ever thought possible.  And I am reassured that when the doctors and nurses tell me Zoey is feisty, that that quality is serving her well.  It has served her big sister well too; I'm just a little concerned that Tom and I might never be able to sleep again...

Thursday, July 24, 2014

And we're still dealing...

Today I would have been 30 weeks pregnant.  Instead our baby is about a week and a half old.  I won't say I've accepted everything yet, because I definitely have not, but I guess it's getting a little better.  I won't say we've quite settled into a routine yet, but we're getting a little closer.  I should be able to drive by the weekend or beginning of next week which will make me feel a LOT better and not quite as helpless as I have been this past week.  Emotionally I'm still kind of a mess.  I'm not saying I spend my whole day crying by any means.  I'm not depressed, I'm not worried about post partum depression, or being too upset to function, but we're kind of dealing with a lot of shit.

Tom has really only taken one day off since Zoey was born and that was last Friday.  He worked from the hospital Tuesday through Thursday last week and has been Tuesday and Thursday this week.  He of course, is in the middle of a million projects right now and trying to work and take care of Tera, and me still to a point, and see Zoey.  He's strong, but there is only so much one person can take at once and is therefore completely exhausted each day.

I have to pump for Zoey about seven times a day, so my schedule has to revolve around that and each session takes about 30 minutes total at least.  And even though my beautiful baby has in fact been born, since she isn't at home, I have to set an alarm to wake up myself up around 1:30 am to do it in the middle of the night and then try and fall back asleep, then get up at 5:30 to do it again.  Then I help get Tera ready for daycare so Tom can drop her off and either go to work or come back home to get me and go to the hospital.  At nights we try and stay home so Tera's routine and time with us is as typical as possible.

But on top of the Zoey issues we're dealing with, Tera seems to be acting up at daycare again.  Apparently there are some issues with pushing and at mealtimes and some of the things we've suggested in the past, aren't working now.  Today they're trying her weighted vest to see if that helps, but if it doesn't I'm kind of stumped.  There's no way to know if she's acting up because she knows there's changes going on with Tom and I, or it may not be related at all.  She's had these types of issues before when things were normal at home so it's really hard to say.  She starts back at preschool in just a few weeks so I'm hoping at the very least, that that will help, but she was having these types of issues last year at the end of the school year so who knows.  We keep thinking a behavior chart would help, but it's hard to settle on something that will work in all of her various settings, but that will allow us to be consistent wherever she is.

I don't know that I could feel more overwhelmed by life right now.  I deal with Zoey issues during the day and Tera issues at night.  I can't do anything for Zoey, but I don't know if that makes me feel better or worse.  As far as Tera is concerned, there are too many variables to really know for sure what may be causing problems.  I don't want her to be the kid that causes problems and I know for the most part that she is a very sweet, loving, and good kid.  And she's going through a lot right now.  She's an incredibly intuitive and empathetic little girl and environmental factors affect her.  She knows there is a baby somewhere, and we've called her her sister, but she hasn't met Zoey yet and even when she does, she won't be at home with us yet and so it will be difficult for her to process.  I've tried to assume she understands more than we think and we've been trying to explain what's going on.  I even tried talking to her about her behavior at school, but I don't know for sure what goes on in that pretty little head of hers so who knows if it makes any difference.  She's also been struggling at bedtime since our lives were turned upside down and I think we're making some headway on that front, but the behavior part of Tera is a constant struggle of trial and error and guessing and hoping.

And my neuroses and neat-freakness aside, things like laundry and dishes, doctor appointments for Tera (and some for me too), and paying bills all still need to be done.  Oh and then we have that little project of adding a screened in room in our backyard going on as well.  And my poor husband is left to deal with most of that mess as well.

But here are some positives in the Zoey situation that at least help us deal with the rest of the mess that is our lives.  Her chest tubes are out and lungs are stable.  She was moved off the oscillator over the weekend to just a ventilator, and then off the ventilator yesterday to a CPAP, and should today be moving to just a low steady stream of oxygen (of which she's just at room oxygen and nothing extra).  They've taken her off all the pain medication she was on for the chest tubes and her she has central line in her arm instead of her belly button.  Her second head ultrasound showed no extra bleeding which means the amount of blood that was in there should just gradually reabsorb in the rest of her body with no long term side effects expected.  She has been tolerating feedings of only 2ml every six hours by a tube in her mouth to her stomach and has finally pooped :)  The one big current issue is her heart murmur.  They were deciding whether or not to intervene, but ultimately decided to medicate her to hopefully help the hole close so that it doesn't affect her lung function.  It's a three day course of medication at the end of which they will repeat the heart echo and see if it helped.  As of yesterday the doctor said she thought it sounded better, but we haven't talked to the doctor yet today.  Some of the best news of my week though is that I was finally able to hold her for the first time yesterday.  It was only for an hour and they want us to try and only do the holding every other day right now until she's a little more stable, but it was one of the best moments of my life.  I'm sure there's more info, but I can only remember so much at one time right now.

Tomorrow we will take Tera to Gigi's so she can play and we can just pretend something is normal and then we're going to bring her down to the hospital in the afternoon so she can finally meet Zoey.  I'm hoping Tom can hold Zoey either tomorrow or sometime over the weekend so he can finally feel a little more connected to her.

I think that pretty much sums up our life right now.  We're dealing, happy with Zoey's progress, exhausted from life, and trying to maintain some normal for Tera (and for us).  I will continue to keep everyone posted as much as I can and once again, we appreciate all the thoughts, concerns, and offers for help.

Saturday, July 19, 2014

As reality sets in

There are probably a few people who read my last post and wondered what actually happened.  I will say that after sharing it with many people over the past few days, in combination with being pretty tired, I will just give the overview.  

We knew after the diagnosis of the vasa previa that my situation could change at anytime.  I was told to restrict my activity and I had.  But on Monday afternoon, for some reason, things changed.

At around 3:45 on Monday afternoon, while my mother-in-law was fortunately at my house, I had a complication.  She took me drove me to the hospital and Tom met us there.  We had originally headed to Highland Park Hospital, but shortly after leaving the doctor on call  told me they wanted me to head into Evanston Hospital instead because of the fact that I had already had the issue the week before and that I was only at 28.5 weeks.  

Tom met us at the hospital and the the nurses and doctors took over.  Things fluctuated a bit and they told us to expect to be here for a few days for observation, but they were also very upfront that if things turned, we still needed to prepare for a c-section early.  A little after 8pm we thought things were getting better, and just as a point of reference, (Tom looked later) he texted one of my friends at 8:26 to tell her things were looking okay.  Right after that, things weren't okay.  Another complication, accompanied by cramping, sent the doctors and nurses into immediate concern and after a quick examination, it was decided that they were moving me immediately into surgery for a c-section.  In what was only a matter of minutes, I signed the consent form, they moved me across the hall, gave me general anesthesia, and delivered our daughter.  She was born at 8:43 pm (remember the text that Tom sent at 8:26?)  

I was able to see her briefly on the way from recovery up to our room and could not believe how little my baby was and that she was in fact in an incubator and not inside me anymore.

The next day was a bit of a blur of visitors, trying to recover, and wanting to see my new baby, but unable to hold her.  And here I am.  Trying desperately to hold on to reality and still trying to grasp what reality means right now.  In a few hours I will be discharged and once again, leave the hospital after having given birth, without a baby to show for it.  And yet every experience puts previous experiences into perspective.  When Tera was born, leaving her in the hospital for four days seemed near impossible.  And here we are facing the reality that Zoey will be here for not four more days, or very realistically, not even four more weeks, but longer.  And that not only do I have to drive 40 minutes to see my newborn baby girl, but I have a little girl at home that also needs me very much.  

And on top of this, I'm really trying to handle my own issues.  I have to physically recover from the c-section, which fortunately is going very well, and this is going to sound odd, but I'm mourning the sudden and very unexpected end of my pregnancy and also the fact that we just won't get to experience a "typical" birth and bringing home a baby.

Most people who know me know that I don't love being pregnant, so it would seem to be a positive to all of this that I get to be done quicker, but knowing that the end of it came with so much stress and worry, and that I had no time to prepare for it, has left me a little uneasy.  Being the Pinterest addict I am, I had hopes of doing some of those really cute, memorable maternity pictures.  We had taken some, but now I won't get to do some of those other ones I had hoped to get, especially with Tera.  I can't even really nail down what else about it bothers me, I just know the feeling keeps hitting me that I'm not pregnant anymore and after these two roller coasters, I won't be ever again.  Although, I can most definitely hear wine and vodka calling my name...

And I won't lie that over the past four days, when I have seen or thought of newborn babies anywhere, a little piece of my heart hurts that I have yet to hold mine.  We aren't putting her in her car seat to go home today, the outfit I had packed in my suitcase doesn't even come close to fitting her, nor will it be worn.  Her room will remain empty for a while (though it's not completely ready yet I would rather she be in it).  

I know these posts will become more positive as things progress, but it's just a really hard time right now.

With Tera for the first time

With Zoey for the first time

Wednesday, July 16, 2014

Say hello to our little 28.5 weeker!

I don't even know where to begin right now.  Three days ago I was still pregnant and while cognizant of the fact that a new condition meant more risk to my pregnancy and a chance that delivery could be even earlier than my already scheduled early c-section, I didn't really think that I'd be sitting here now having just posted a picture on Facebook of our newest daughter, Zoey Theodore Theodore, born at 28.5 weeks.

The whirl of emotions going through me is really indescribable.  I'm in shock, I'm overwhelmed, I'm happy, I'm sad, I'm worried, I'm terrified, I'm relieved, and I'm about a million other things that I can't even name.  The stream of visitors, doctors, pumping, and trips to visit my littlest girl has distracted me all day and now that I'm really alone with my thoughts, I find myself completely and utterly emotionally exhausted.  I'm still recovering and while I'm doing really well physically, there's only so much I can do to help myself mentally except try and rest and really achieve the impossible task of not over thinking everything.

At the moment, I'm really mostly thinking about Tera and how I haven't seen, in person, or held or kissed her since Monday afternoon.  My daughter with special needs has now gained a sister with different special needs (at least hopefully only short term).  My worst fears about how to deal with a three year old that, even without special needs, would have a hard time understanding what's going on, and now another child that needs just as much of my attention and love; have come true.  I've had to focus on my own recovery and the changing status of what is going on with Zoey here at the hospital while Tera stays with my incredibly supportive in laws.

And after two days of non stop emotional and physical exhaustion, I find myself no closer to reaching any sort of balance; nor do I expect to anytime soon.

My posts for the next days and weeks will serve as a way to update our very large, very supportive and loving family and friends on Zoey's progress, and also as a way for me to try to work through and deal with my own struggles as we make our way through this new adventure for our family.  Thank you to everyone who has already sent messages, texts, and calls, your love and support mean the world to us as we figure this all out.

I'll try to include an actual update and information tomorrow when I'm less tired for those of you who aren't on Facebook.

Wednesday, July 9, 2014

I'm a medical miracle!

So this week has brought an interesting turn of events.  Not with Tera for once, but with my pregnancy with our second little girl.  When I was diagnosed at 20 weeks with complete placenta previa, I was told that there was very little chance that it would correct itself and to just plan for a c-section at 36.5 weeks.  So we did.  We wrapped our minds around the fact that this little girl would be earlier than expected, I had to make accommodations at work because it meant I wouldn’t be able to start the school year, and I had to come to grips with the fact that the one part of my first pregnancy that I actually enjoyed, and yes this sounds very odd to many women, actually giving birth, wasn't going to happen the same way.  I will grant you that I had a very easy, very fast delivery so I know I don’t have much to complain about.  But now I was having to accept that I wouldn’t be able to experience that again.  I was going to have to have a c-section for the safety of myself and that of the baby.  

On top of the delivery differences, I also had to understand that the risk for bleeding at any time was increased.  I was very lucky for a while and had absolutely no issues, until Sunday night.  

Sunday night I had to get up with Tera during the thunderstorm, as she has developed an unfortunate fear of them at night, and when I thought she was back asleep, I stopped to go to the bathroom before heading back to bed; and that’s when I realized what was happening.  Since it was the first time, Tom and I weren’t sure whether or not to call the doctor right away, but when Tom got up with Tera again, I decided I shouldn’t wait.  

When I talked to the doctor on call, she told me I needed to come right to the hospital.  So we called Tom’s parents to come over at 12:30 at night in the middle of a thunderstorm to stay with Tera while we headed to the hospital.  

It was pretty empty in the Labor and Delivery ward at the hospital and I had a great nurse who checked mine and the baby’s vitals and reassured me that this was very normal with placenta previa.  The doctor came in shortly after and told me they would be admitting me overnight for observation and that we would most likely go home in the morning.  I told her that I had an ultrasound scheduled for Wednesday to check on the progression of the placenta previa and she said as long as I was there, she would try and get it moved up.  We were able to get small amounts of sleep once we had a room and the next morning the nurse told us that my ultrasound had been rescheduled for 12:30 that day.  While we were bummed that we would be stuck there a while longer, at least we would be able to see what was going on.

During the ultrasound they discovered two things that kind of baffled everyone.  First, the complete placenta previa that was highly unlikely to move, had moved! Even the technicians were shocked.  But then they continued to look through everything and were a little more confused.  Upon further inspection, it appeared that there are in fact two lobes of the placenta that are connected by a blood vessel, which is preventing the baby’s exit and therefore, creating almost the same situation as the placenta previa.  But now it’s called a vasa previa.  It’s a different set of circumstances internally, but really it means the same thing for me.  I still have to have a c-section and it will still have to be early.  I am on a more restricted physical regimen that means no exercise other than basic caring of Tera and walking where I need to go.  Also, it seems that there is a slightly increased chance that this could mean an earlier delivery depending on how things progress so I had to get two steroid shots to help the baby’s lungs develop faster in case that has to happen.  

So I went from a fairly unlikely situation of having a complete placenta previa resolve, to having a slightly less common condition of vasa previa.  The doctor actually suggested (jokingly) that they should study me.  Because I’ve always strived to be a medical anomaly…

So that’s where everything is right now.  I’ll see my actual doctor next Thursday and I’ll have to get ultrasounds every three weeks from now until the end to see how the baby is growing and to make sure I’m not approaching early labor.  And at this point, nine weeks from this past Monday she will be here…

In the meantime, I have to try and adjust to not overdoing it and feeling kind of useless and frustrated with the physical limitations.  I’m really not good at not doing anything, however, I know that it’s in the best interest of both my health and the baby’s.  I suppose I should look at it as perhaps the last time for a while that I’ll be forced to take it easy, which still isn’t easy with an overactive three year old with special needs, but I hate having to ask others for help and I hate feeling like I can’t contribute to basic things around the house.  And I really hate that more will fall on Tom now even though I know he’s okay with it given the circumstances.  

But as always, we will get through this like everything else and in what will be at most nine weeks from now, we’ll be able to hold our newest little girl and revel in seeing her big sister’s face light up when she gets to hold and kiss her new little sister.  

Tuesday, July 1, 2014

"Mom guilt"

Mom guilt is a real thing.  Parent guilt is probably more appropriate because there are plenty of dads out there that have their own guilt, but since I'm a mom, that's what I can write about.

I don't know if I feel more guilt during the school year when I'm a working mom, or now during the summer that I'm a full-time mom and in theory, have no excuse not to be spectacular.  Except that that isn't realistic.  But it doesn't make it any easier.  I do have some more time to read through the various articles that float around social media though and one of the ones I came across a few days ago really hit home.  Many of those types of articles seem like they are geared more towards moms of typical kids or moms of multiple kids, and I don't really feel any sort of association with them, but this one was different.

I don't know if it was the article itself or just my own hormones and mom brain/heart that are working overtime right now, but I feel it.  Not all the time, but a lot of the time.  Tera is a very demanding child, not just in what she asks for, but just as a result of her general behavior and situation.  She needs pretty constant supervision: she climbs, grabs things off almost any surface, oftentimes walks or runs without looking where she's going, is potty training but isn't able to go by herself, can't drink from an open cup but would like to, needs her liquids thickened so it's not the best idea to let her drink anything that isn't, she throws things (lots of things), still sometimes puts things in her mouth that aren't supposed to be there, tends to strip down to her diaper when left alone too long, and probably a number of other things that I've forgotten about for now.

As a result, I sometimes look for anytime when I can just sit down and do something mindless for a few minutes (like cruise Facebook or Pinterest).  But then as soon as I hear that, "mama!!!" I'm hoping I can prolong her short-lived independent play just a little longer.  And I will admit, we use the TV and iPad more than is recommended, but at the same time, sometimes Tom and I need a break and this kid is by no means a passive watcher.  She's pretty much only watching TV when she's eating and strapped in otherwise she's too busy doing any number of other things to even pay attention to what's on.  We consider ourselves lucky when she actually sits down to watch a movie (and then we check her temperature because it's not normal for her).   And lately, sometimes I'm just too damn tired to try and entertain her with something new.  But then I remember that this is what I look forward to so much of the time and feel guilty about not being able to just enjoy my time with her.

I feel guilty when she wants to play outside and we're too tired to chase her around the yard which is currently a hazard in many parts due to a small addition we're doing soon.  She has such a limited attention span that one hour outside can include 15 different activities. Bubbles seem like a great idea and as soon as she sees them she wants them, but that lasts for maybe two or three minutes before she wants to move on.  Her water table, currently full of rice, is great, but she has a tendency to dump large quantities of rice on whatever surface it's on despite multiple warnings.  She likes to ride in her Mini Cooper and Batmobile, but lacks the ability (or maybe the interest) to steer so we have to constantly redirect, steer ourselves, or retrieve her from whatever she's landed in.  The sandbox is great and entertains her for a while, but then I have to clean her up afterwards.  She has a blow up pool which is great because she loves water, but she's more interested in dumping the water out of the pool, than sitting in it.  Which is fine, but still then requires a change of clothes either before or after.

I feel guilty that I'm sometimes not more creative with lunch ideas for her that don't consist of peanut butter and jelly, noodles, or eggs.  But at least they're not bad for her and they are things I know she'll consistently eat.  Healthy eating isn't really a problem for this kid, we oftentimes have to bribe her with vegetables just to get her to eat some meat.

And I know when the baby gets here, there will be even more guilt.   Through no real fault of her own, Tera just demands a lot of attention and has a lot of special needs that will be harder to tend to when there's a baby that's even less self-sufficient than she is.  She absolutely adores babies though and loves helping out with them at daycare, so I'm really hoping that if I can find enough ways to keep her involved, she'll still get what she needs and I won't go quite as crazy as I think I might.

In the meantime, I'll just look forward to the fact that from what I understand from other moms, my own included, this whole guilt thing will never actually go away and I'll just have to find new ways to cope with it...

Wednesday, June 25, 2014

Summer "break"

We are on week three of summer break and this is the first week of the three that we don't have appointments every day.  See, the reality of life with Tera is that days off means appointments with specialists that would otherwise require taking time off of work.  Most of the our winter, spring, and summer breaks have at least a few these appointments and while I'm lucky that I have the opportunity to schedule things during these times, it's hard to look forward to my time off with Tera when we spend so much of our time in offices.  Last week was the worst I think; dentist and blood draw on Monday, the DS clinic on Tuesday, therapy on Wednesday and Thursday, and literacy on Friday.  Fortunately, I think the worst of it is over and we can move on to more important parts of our summer like playing, running around like a lunatic, and snuggling; okay, maybe that last one is just wishful thinking on my part, but crazier things have happened.

One of the things I'm most focused on this summer is making sure we don't waste our time together.  While it is inevitable that things have to get done, like laundry, grocery shopping and other errands, house cleaning, and yard work, I'm trying to make sure we spend some time doing the things we've wanted to do.  So far since the weather has been nicer we've made it to the Botanic Gardens, parks, a wildlife conservatory, the Jelly Belly Factory (not our favorite adventure), and Monday, the Kohl Children's Museum.  Tera has played in her sandbox, yesterday we experimented with the sprinkler, and I made a few (two failed) sensory activities.

Surprisingly, while these things have been on my "list" since last summer, somehow the summer that I have the least energy is when I've checked the most things off.  With my current condition, I'm not sure how long I'll be able to do some of these things so I'm kind of the mindset to get whatever we can done before the possibility of my doctor telling me I really have to take it easy; which I don't do well with.

It's really hard to find a balance between fitting in things that I know will benefit her, and just trying to relax and have fun.  This is what a day with Tera is like: we're either out running errands or trying to do something fun, which is exhausting because she has to be supervised/strapped in every second or she takes off, or we're home and she's testing every limit, breaking new records as to how many times she can say no to whatever I'm asking her to do, or reaching for and throwing everything in sight.  She can have a day with no time outs, or we can have a day, like this morning, when she has two in twenty minutes and still shows no sign of cooperation.  I can try and suggest or try something new or fun at home and she loves it and does great, or within ten minutes I'm questioning my sanity.  Today my brilliant idea was to try and kill two birds with one stone and let her play outside which she always wants to do, and try and get some of the ten bags of mulch I have sitting in front of our house spread.  I was going to try and have her help, which is usually a great way to keep her engaged and usually helps with her behavior, but every time I told her we needed to get dressed she said no and I wasn't about to reward that with then letting her go outside.  Which then also meant she didn't get to play and I didn't get my mulch done.  On the plus side, I was able to start a load of laundry and put away two other loads while she was in a time out and confined to her room.

I found this a few weeks ago on Facebook:

I feel like this sums up many of my days at home with Tera.  I start off with these great things I think she'll love and memories we'll have when she gets older, and instead it turns into her throwing a tantrum and me feeling like I have no control of my child, or really, my life in general.  Which then in turn, makes me question how the hell I'm going to handle anything when there are two of them and one of me.

I can be so incredibly frustrated with her and then out of the blue she'll come up to me and look at me with those big beautiful eyes, and I'll try and remember for a minute how I could possibly have been so angry or frustrated with her.  And then usually within twenty minutes or so she reminds me once again.  This truly has been the most frustrating, exhausting job I have ever loved more than anything.  That kid's face, eyes, hands, hugs, kisses, curiosity, and accomplishments have forever changed me.  She is my biggest challenge, and so far, my greatest reward.