The roller coaster ride

We are beginning to understand the ways of the PICU.  It is a roller coaster ride of emotions and patient status and well being.  It is two steps forward and one step back, which is to be expected.  Thankfully it is not one step forward and two steps back.  It is beeping alarms and eight IV pumps going at the same time.  It is bedside change of shift report that lasts for a half hour on one kid (mine) and 7am rounds with the cardiologist, the surgeon and the intensivist.  Currently it is a way of life and consumes me entirely.

I have said it before, but I look forward to the day when this blog goes back to being about everyday nothings.

I will start at the beginning.  Hannah had her surgery on Wednesday morning.  The surgeon closed the VSD and took her off bypass, then they did an ECHO and discovered another VSD that was tucked up way underneath the tricuspid valve.  So back on bypass (thankfully they do the ECHO before finishing the close) and they fixed the second VSD.  The surgeon also placed a stitch in the ASD.  They ended up having to leave her chest open overnight because she didn't tolerate closing it all the way.  She had some slight swelling and irritation of her heart and started to have low blood pressures, hence the big hole she came to the PICU with.  The surgeon had placed a patch over the hole and we couldn't exactly see her heart beating through it, but we could see the patch moving because of the vibrations of her heart.  This was fascinating to me.  From the moment I handed her over to the nurse at the OR doors I have felt peace.  It is surely only due to the prayers of all my friends and family and complete strangers!

I spent the night in the PICU last night, I will again tonight.  I did not get too much sleep last night.  Hannah was struggling with low blood pressures and an occasional irregular heartbeat and a few other things.  Needless to say her nurse earned her paycheck last night.  Hannah was a 1:1 and her nurse rarely left her side.  There were a few times when Hannah was acting up that most of the night staff were in her room.  These women are wonderful, I cannot say that enough.  Watching it from a nurse's perspective I have to say they worked so well as a team, so supportive of one another and working so hard to give my little peanut girl the best care.  From a mother's perspective I saw angels, caring for my baby.

This morning the cardiovascular surgeon and the cardiologist came in and decided it was time to close the hole.  They brought the OR team with them and closed it right here in her room.  I would have loved to put on some scrubs and watch, but probably only if it wasn't MY baby.  I'm experiencing something I hadn't planned on: I'm fascinated by all the medical stuff going on around me.  It kinda makes me wish I was a PICU nurse!

The rest of the day had been on and off exciting.  She ended up needing some pace maker type help for about an hour late in the morning, but the surgeon and cardiologist assured us she is not doing anything they wouldn't expect her to do.

Tomorrow hopefully we start to loose some of the "stuff" attached to her.  The vent and the blood pressure meds will be the first to go, I'm excited about that.

Will keep you posted...

Almost there...

Had the trial run down to PSL this morning.  We found the parking garage we DO NOT want to park in on Wednesday.  The Rocky Mountain Hospital for Children at PSL (that's their official name or something like that!) is heavy on the waiting rooms, and thankfully, bathrooms.  I love children's hospitals.  When I was in nursing school I was a clinical aide at The Childrens Hospital here in Denver, I loved that place, it's true that children are not just small people.

We met Dr. L, the surgeon, everything I had heard about him having a great bedside manner and being really friendly and knowledgable was true.  He explained at length all about the anatomy of her VSD and the repair and her recovery, it was wonderful.  Having all the info makes me nervous and then a little less nervous because I'm a planner and I like to know what's coming.  She had her ECHO, EKG and a bunch of lab work and Jeremiah and I took a tour of the hospital while she was having all that done.  Jeremiah and my Mom even donated a pint of blood each for the baby if she needs it during surgery.  They said it wasn't all that bad, maybe I will even be able to convince them to do it again sometime.

I feel really at peace about her surgery right now.  I'm sure I'll freak out later, and then be fine again and then freak out again and back and forth several times before Wednesday morning.  I keep placing my hand on her little chest, so smooth and perfect, I can feel her heart beating inside.  I don't want her to have a wound there, a scar to remind us of all this, but she will, and I'm sure that with time it will fade, just as some of the emotions surrounding all this will fade.  She will never remember her surgery, I'm thankful for that.

I have a list of things to do to occupy the time between now and Wednesday morning.  Laundry, packing, getting the house in order for me to be gone for awhile, spending time with Abby and Eli and Jeremiah.  On the agenda for tonight?  Dinner date with my husband to Ikea to look at new drinking glasses, ah the joys of an everyday life, I savor them!  Thanks Mom for watching the kids so Jer and I can spend a little time alone together.

Until next time...

Some of my thoughts...

Well Hannah's surgery is scheduled for next Wednesday the 16th.  I am eager to get it over with.  We have some pre-op stuff on Monday morning, blood work and a sedated echocardiogram (ECHO) to get a very detailed look at her heart.  I'm hoping they explain a little more about the surgery and her recovery at that appointment because I'm not sure what is really going down on Wednesday.

There are a lot of things going through my mind right now.  I am experiencing a little tunnel vision, like I'm stuck in this heart surgery black hole or something.  I'm sure there is stuff going on with Abby and Eli that I'm missing out on and my household is beginning to suffer a little bit, the place is a mess and I was late on a few bills; I will be so glad when this is all behind us.

I'm trying to prepare myself for what will happen in the hours and days after Hannah's surgery.  I can't decide if it's better to be a nurse or not.  I honestly don't remember a lot of cardiac stuff, I was not very good with the cardiovascular system and all the medications and I certainly don't know how you perform the surgery that Hannah will have.  All I know is I'm going to hand them my little baby who looks perfectly healthy and when she comes back to me she will look sick.  I'm trying to mentally prep myself for that, and I'm packing a big box of kleenex too.

I also feel like I need to explain something.  Hannah's heart defects, the PDA, ASD and VSD are some of the most common congenital heart defects.  I'm not sure about the statistics, I haven't done to much research online, I'm not sure why that is, but the cardiologist told us that this is one of the easier surgeries the surgeons perform.  When compared to some of the other heart defects out there this is a piece of cake.  Still, she's my little baby and I've never been through something like this, so to me it's still a big deal.

I've been following another blog on and off for sometime now.  If you're in the mood for a good story and a good cry go over to BowensHeart.com.  This is the blog by Matt and Sarah Hammitt, Bowen's parents.  Matt is the lead singer for the Christian band Sanctus Real and they started the blog after they discovered that their unborn son had hypoplastic left heart syndrome.  Bowen recently celebrated his first birthday and he is a little miracle.  I've been reading about him since before I was ever pregnant with Hannah but it took on a different meaning after we had her.  It has been both terrifying and comforting to read it.  If you're at all nervous about Hannah's surgery you may want to wait until after she is stable and recovering, but I would recommend it to everyone.

I will continue to blog with updates from time to time.  I look forward to the time when this blog goes back to ranting about raising children and sharing my random and funny thoughts on life.  Hannah says hi.

Waiting for the phone to ring

November is here.  I have a feeling this month is going to go by in a speedy blur.  I'm still in the midst of that postpartum fog, the one that lasts for the first year or so due to lack of sleep and hormones and other factors. 

Today was the day when Hannah's cardiologist, the amazing Dr. C was going to meet with all the other docs and surgeons in their group to discuss all the potential and upcoming surgery cases.  They agreed that Hannah needs surgery to repair the holes in her heart, and now is the time to do it.  So now I'm just hanging out waiting for the surgeon's office to call me and schedule her surgery.  Dr. C was kind of funny on the phone, he must have all kinds of parents he has to break this sort of news too, and I'm sure everyone reacts differently.  He asked me how I felt about Hannah's surgery and I told him flat out, "I'm ready, bring it on."  I could almost hear him smile knowingly over the phone, "I know you're ready," he said.  

So now I'm just waiting for the phone to ring to schedule her surgery date.  The surgeon is out of town next week so it will hopefully be the week after that.  It's not like I have to work the timing around my other appointments, I'm pretty sure I can cancel my hair appointment.  But looking ahead at the calendar I'm guessing I will be sampling the fine dining experience that is Thanksgiving at Pres/St. Lukes.  Hospital turkey isn't all that bad, I think I've had more Turkey day dinners in the last ten years at the hospital I work at than I have at home.

I'm not sure what to expect.  I keep going back and forth from being excited that this is really going to happen soon to being really nervous that this is going to happen soon.  Thankfully the cumulative sleep loss of the last three months is helping me to be exhausted enough to sleep at night instead of lying in bed worried about surgery.  The stress is a little much, I've got a horrible head cold, the backs of my eyes hurt and I have a knot under my left shoulder blade that any good Boy Scout would be proud of.  But there is a light at the end of the tunnel, and I'm thankful for that.

Stay tuned...

Li'l Miss Swiss Cheese Heart

Hannah and I bundled up today and went to see her cardiologist.  I'm happy to say that may be one of our last visits!  That's because Dr. C said he sees no reason to put off her surgery any longer and he will be presenting her case to the surgeons for consideration at their conference on Tuesday.  Hooray!  I felt a little weird during the appointment when I was getting excited about her surgery.  I'm sure at some point it will hit me and I will get scared and nervous and cry again, but for now I'm relieved.  

So here are the answers to some of your questions:

-Hannah breathes fast.  Like 80 breaths a minute when she's awake.  This is pretty much her norm and has been since birth, but she's going to start tiring out soon.  Fixing the holes in her heart will cure that.

-Ready to get your Google on: Hannah has an atrial septal defect (ASD) which the cardiologist said is more like a patent foramen ovale (PFO), two ventricular septal defects (VSD) one is kind of in front of the other, and a patent ductus arteriosus (PDA), these are the holes the surgeon will close.  There are some other little variations in her heart that the doc said are like little oddities that they don't need to fix and won't affect her at all.  I can picture the surgeons getting into her little chest and going, "huh, look at that..." 

-Her heart was enlarged a little at the last appt in September, it's working harder to pump the blood thru her body, it's a muscle, therefore it grows.  Now the left ventricle is starting to enlarge as well.

-She is not gaining weight as fast as she used too, she was 6 lbs 14 oz today with a wet diaper on!  She should be 7 lbs or more if she was following her growth curve.

-Once the surgeons decide it's time to do surgery it should only take a week or two to get her on the schedule. 

-She will probably be in the hospital for a week or maybe two after her surgery, it all depends on how well and soon she can start eating again. 

 

And lastly:

-It's open heart surgery. That one took me awhile to wrap my mind around.  There are some other complex details that I'm probably forgetting for now, but that touches the surface.

So I'm happy.  And excited to get this all over with and behind us.  I'm nervous about surgery, but I've already had a chance to roll some of that around in my head for awhile, so I'm not as freaked out about it.

So be praying that the surgeons accept Hannah for surgery, that we can schedule it really soon and that she stay healthy so she can have surgery when it's scheduled.  I think I'm going to go buy a Costco size bottle of hand sanitizer and slather the other two kids in it daily.  You can email me questions, thanks for reading!

Back to the grind

Yesterday was my first day back to work.  I must admit that I really didn't want to go back, not in the least bit, not at all.  But I had to go back, and it really wasn't that bad.

Don't get me wrong, I love my co-workers, my friends at work.  For the last few weeks leading up to Hannah's birth when I was so stressed out everyone took care of me.  They listened to my worries and assured me that she would be okay and that whatever happened they would be there for me.  When Hannah was born they all came to celebrate and congratulate!  They decorated my postpartum room for me, everyone came in to visit, I felt immensely loved!

Then I went home.

I missed my friends at work for the first several days.  I spent the first 3 weeks or so of my maternity leave texting my work buddies.  I felt a little lonely, a little left out of all the excitement at work.  Eventually it wore off.

I live in a weird world.  I desire to be a stay at home mom, yet I desire to be at work.  I'm sure there are several thousands of women out there just like me.  When I'm home I'm happy, I've really learned to embrace my home and my family and my roles as a wife and mother while I've been on maternity leave this time.  There was no stress of, "I have to get all this done today because I have to work tomorrow and then have a ton of stuff to do the next day" stuff.  I didn't worry about how little sleep I was getting because it's not like I had to wake up before the sun and go be responsible for 8 perfect strangers for 12 hours.  When I'm home I'm only responsible for my family, and it's okay if I'm a little tired, cranky, foggy, late.  Theres's laundry and cooking and cleaning and kids, but there is no charting.

Man I hate charting.

When I'm at work I'm happy.  I have my friends, some of them like family.  We chat, we catch up, we help each other out, we suffer together when it's tough.  There are wonderful families that I get to take care of, they welcome me into their lives for a brief bit of it and I enjoy it, most of the time.  Sometimes I get to be present at the birth of babies, that is probably my favorite.  It's exciting, terrifying, emotional.  We may be extremely busy some days, I get tired and I really don't want to do another delivery, but then I go and I watch a new person take their very first breaths and the parents cry and it's worth it.  It's fun to spend time with the new parents, watch them learn to care for their new baby, answer their questions and teach them how to change a diaper, feed and burp their baby, it's fun, except for the charting.

Sometimes I feel like I have two personalities.  Well, not two different personalities, but there are two halves of me.  The work me is better organized, more disciplined, generally more professional and courteous, the home me is more laid back, lazier, easily distracted, ditzy and sometimes a little cranky.  But I'm happy at both places.  And I'm fun at both places.  I use humor at work to make it through the day, I use kid humor at home to make it through the day.  I do thrive on being around my work friends, you can tell when I've been off for several days because I talk non-stop, I need to be in on every conversation, I'm a little starved for adult interactions.  I also need quiet time at home, not talking to everyone about everything, just sitting on the couch cuddling my kids or folding laundry.

I wrestle with this from time to time, wondering if I'm doing the right thing by working.  I'm a good nurse, I'm good at what I do, am I as good at being a mom?  I feel like I'm learning to be a good mom, it's a constant work in progress.  It's easier to be a nurse than a mom.  For one thing, I had four years of training to be a nurse.  I had to pass a test, I'm licensed.  I have proficiencies and skills I need to keep up to date at work.  I'm just kind of winging this whole mom thing.  It's more like on the job training.  But it's the most important job I have, being a wife and mother.  And I'm learning to work as hard at that as I do at work.  So maybe this whole work thing, this whole being a nurse thing can help me be a good mom.  I guess maybe that's why I work.  I like work, I love being a mom.  And at home, there is no charting.

Where I've been.

(Warning, this one is LONG)

Well it's been about 3 months since I last posted an entry.  I guess you could say I took the summer off.  It started out with me just not being on the computer very often, we played outside and went swimming and all the other summer activities and being on the computer fell to the wayside.  Then, as the temperature climbed we spent more time in the air conditioned house and I still didn't blog.  Now I'm so far behind that I could write a novel, it may take me weeks to catch up with all the stuff that has happened this summer.

Here's the Cliff Notes version of our summer:

Went swimming, planted a garden, chickens started laying eggs, Eli skinned his knees, Abby rode her bike and played with the neighborhood kids, went to visit family in Kansas City, Eli got splinters in his hands, worked a lot, was hot, ate a lot of frozen yogurt, bought bunk beds and Eli moved into Abby's room, got mosquito bites, finished the nursery, laundry, had a lot of doctor's appts for the baby, was scared the baby might be really sick, Jeremiah and Abby camped in the backyard, was induced, had a tiny baby, brought her home, Abby started kindergarten, made zucchini bread.

No wonder I'm tired.  And we didn't even get to go to the zoo.

A lot of my summer was eaten up by various doctor's appointments.  The baby was on the smaller side at her 20 week ultrasound, so we did a follow up 30 week ultrasound and she was still small, so we did another one at 33 weeks and she was even smaller at that one.  She went from 16th percentile on the growth chart to 7th percentile.  So then I had to go to weekly appts at the perinatologist from 34 to 37 weeks and get ultrasounds and biophysical profiles and non-stress tests and it all got rather boring.  By 36 weeks she had fallen off the growth chart and they were estimating she was 3 pounds 12 ounces (to compare, my other two children were about a pound bigger at that stage).  There was talk of hospitalization, bed rest, early delivery, so on and so on.  Each week I would go to the appts and watch my little girl on the ultrasound screen.  She would kick and roll and wiggle around, she had the hiccups, she practiced her breathing movements, she sucked on her knee and fingers and thumb, she even peed once (we could see a full bladder, then the next thing, it was empty!)  The perinatologist would come in and tell me that the placenta looked good, and there was adequate fluid and the dopplers were good and she was looking great, so then, why, I wondered, was I doing all this extra testing?  And why was she so  small?

I finally asked my own OB what the deal was?  Why is she so small?  Should I be on bedrest?  Should I stop working?  Can I drink protein supplements to help her?  She told me what the perinatologist told her, that they still believed, as they had all along, that our baby had down syndrome and that she was just genetically made to be small and I couldn't change that (so why try, it felt like they were saying).

I cried when I got off the phone.

I had all but dropped the down syndrome thing from my mind.  It all came rushing back to the surface.  The same fears awakened, only now my due date was so close, the nursery was finished and her tiny clothes hung in the closet and I wondered if we would be bringing her home or if she would be staying in the NICU for weeks.

I would go to work and talk to my nurse friends there.  I decided to share the whole story with them, the truth would come out eventually.  They listened with sympathetic ears and reassured me that the doctors were wrong.  My husband claimed the perinatologist was an idiot and declared it all a cruddy placenta at fault (I've had problems with my placentas breaking down early in the past).  Everyone reminded me that we would love our baby girl, no matter what.  But still in the middle of the night I worried.  I wondered what would happen the day she was born.  I worried as my induction date crept nearer that she would be  to small to stay in the well baby nursery, that her lungs wouldn't be mature, that something else would go wrong.  Maybe she wouldn't tolerate labor and I would end up with an emergency c-section.

We shared with our friends, with Jeremiah's parents, we kept the whole thing from my parents.  Sorry Mom and Dad, you know now, but we knew you wouldn't sleep a wink if we told you the whole story.  And I was not sleeping enough for everyone.

On Tuesday, July 26th, our daughter, Hannah Joy was born.  I was induced and delivered without to much incident.  Everything started out really slow, and then suddenly I was ready to push and the doctor almost didn't make it.  There were a lot of people in the room.  Jeremiah and my best friend, my mom and his step-mom, at least 2 L&D nurses, my OB, the neonatal nurse practitioner and a nursery nurse, there may have been more, I really don't remember.  Hannah came out screaming and squirming and peed on my doctor who gently placed her on my stomach after Jeremiah cut the cord, the NNP looked her over and told me she looked perfect, and a whole new wave of tears hit me.  She was screaming and pink and in no sign of respiratory distress, just tiny, and she didn't have down syndrome.  Everyone in the room was crying.  Jeremiah and I were so happy and so relieved, we were overjoyed at her birth, that's where we got her middle name from.  My placenta was tiny, and looked old and broken down.

I wrestled with whether or not to blog about all this.  So many of my friends and coworkers already know the story, but not everyone does.  And how much of my own emotions and fears did I want to share with the internet?  I've wrestled with my thoughts since Hannah's birth.  Relieved that she doesn't have down syndrome and feeling guilty about it.  Like I'd missed a bullet or something.  I was worried sick about what might be while I was still pregnant.  I prayed and prayed that she would be okay, whatever okay was, healthy and strong, and that God would help me to love her and comfort my aching heart.  Hannah was born healthy and strong, just the way God had made her, and I love her so much.  I don't love God more or less because of my youngest daughter, but the whole experience has brought me closer to my husband, and closer to God.

I could go on and on, and I probably will in the future, but it's getting late, this is getting long, and I need to feed Hannah.