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...