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.

Happy Hearts

So today was my day of appointments.  Really I only had two, I could have crammed more in there if I had tried, but oh well.  I do need a haircut and some new glasses, maybe next week.

I started at the OBs.  I am happy to say that I will never have to drink orange glucose drink again.  Now, I just hope my glucose tolerance test (gtt) is normal or I will actually have to drink that nasty stuff again.  I should have brought Abby's back up glucometer and checked my blood sugar at the appt, not that we do that sort of thing ;-).  Baby GiGi was happy and kicked at the Dr. when she listened to her heart rate.  Also, she says I'm measuring perfectly and the scale was somewhat nicer to me than I thought it would be.  Pretty good OB appt.  I did learn that it's not a good idea to make the appt at 11 because then I get out of there around lunch time and driving down Colfax and then Colorado Blvd. at lunch time is not fun.

Quick stop at Noodles and Company for some Macaroni and Cheese with extra cheese sauce that I then ate while sitting on the couch and watching GROWN UP TV.  Ah, the joys of my kids spending the day with their Grandparents.  Thanks Mom.

Next appt was the Pediatric Cardiologist.  I wasn't nervous until I started to over think the appt, then I had to calm myself down with a little prayer in the car on the way there.  Turns out the little talk I gave her in the shower this morning helped set my daughter in-utero straight.  She was in a better (not perfect) position and the tech was able to get clearer pictures this time.  The Cardiologist is saying she has a medium ventricular septal defect (VSD) and that's about it.  I'm relieved.  I never thought I'd be so thrilled to hear that my daughter has a hole in between the two ventricles of her heart, but given the severity of the other heart defects out there this one is almost nothing.  The VSD may close on it's own either before or after delivery, or it may need surgery later on down the road, but we can take her home with us, no stop over in the NICU first (at least not for her heart).  Sorry NICU RN friends, you can come out and see her in my hospital room!

It seems like so long ago that Jeremiah and I rode home feeling numb and frightened from our 20 week ultrasound.  I'm glad that it is such a distant feeling.  As much as I try to be an optimistic person, I find that when something scary like that comes up I turn into a pessimistic, hypochondriac, worry wart of a person.  I don't want to, and I always end up scolding myself later on for letting things get out of control. God is always in control.  ALWAYS.  He knows what my daughter's heart looks like, He knows her name, whether there is hair on her little head and how many there are.  He holds her in His hand, He holds all of us in His hand.  So why do I worry?  Why is my first reaction always to worry?  Instead I should turn to God immediately and say, "I don't know your plan for this, but I trust in you."  Period.  But I'm still not perfect, still a sinner, and still working on that.  Maybe someday I will be there, but I find as a mother that it's especially hard to trust immediately in God when something involves my kids.  I always come around to trusting that God's plan is perfect, but I take a scenic little route first, and gas prices are to high to be wasting my fuel on the long way home.

So there you have it.   A little update on Baby GiGi's tiny little heart.  It isn't perfect, but it's not to bad either, and I pray someday God will live in there, hole in the wall or not.

The kids are spending the night at my parents, so I still have the house to myself.  I may just have some ice cream for dinner, so there!  

Easter

I've been trying to blog for about a week but haven't had much time to sit down and type. And now I have Easter pictures so I'm going to tell you about our Easter celebration.

We are in that stage of our lives where family pictures at holidays are hard to get. Would you believe that this was the best one out of two dozen? It doesn't help that I'm usually talking, or messing with the kids hair or outfits or trying to get them to stop fighting/fooling around. 

We had Easter breakfast at my parent's house before church. I would like to say I'm still full from all the food I ate on Sunday, but sadly I'm not. In fact I woke up in the middle of the night on Sunday night/Monday morning and was hungry. The kids looked for eggs at my parents house and then we went to church, then off to Jeremiah's Dad and Step-Mom's for lunch. You want to talk about more good food. Oh, and the jello eggs. Jello eggs are a tradition in Jeremiah's family, his Mom used to make them every year and now his Dad still does. They are filling. I think I ate 3, Jeremiah ate 7. That's a lot of jello.

Unfortunately I forgot my camera for like the whole day so I had to borrow some of my Dad's pictures. The kids looked for eggs at Jer's Dad's house too, I think they went for about 5 rounds of re-hiding. I'm thrilled with this, last year Abby kept wanting me to hide eggs at our house over and over so she could find them, this year I think it's all out of her system.

Not excited about Easter at all is she?

Eli got new cars in his Easter basket. This is the only time he sat still for a picture, a picture with his cars, go figure.

Church was wonderful.  I love Easter music.  And this year it was super awesome, I like congregational singing when the whole auditorium rings.  Abby learned about Easter in Sunday School, Awana, and preschool, so she is starting to get the Easter message.  We tried to make Resurrection Cookies, but apparently I don't have the high-altitude directions so they totally flopped, but the message was still there.   And the kids played with the Resurrection eggs, Abby's favorite is the donkey, but she also likes the cup from the "Last Dinner."  We had a great Easter, how was yours?

Oh, by the way, here I am at 24 weeks.  We did a black and white Easter because black is slimming!

Baby GiGi

Well folks I took a little break from blogging, the weather has been nice so we've played outside some and then Eli shared his cold with me so I've been down for the count for a few days.  But I'm back!  Here's what's been happening:

Last Monday Jeremiah and I had my 20 week ultrasound and found out it's a girl!  The appointment started out alright, the baby, who we've nicknamed GiGi (for baby Girl Gregg) was not in the best of positions.  Apparently she doesn't like being spied on in her comfy little uterine home and so the pictures they were not as clear as I remember from my other two pregnancies.  The tech started at her feet and went about doing the measurements and taking picture after picture, "I'm having a hard time getting clear pictures of her heart, I'll come back to that," she said.  At one point I was laying on my side trying to get the baby to move into a better spot so they could get clear pics of her heart.  This is when I started to think, "hmm, somethings up."  Intuitive aren't I?

To make a long story short (to late) the perinatologist was concerned because with the pictures they could get it looked like she has a ventricular septal defect (VSD).  This is a hole in between the walls of the right and left ventricle.  Also she couldn't get very good pictures of other parts of the heart and she referred us to a pediatric cardiologist.  The appointment after that part is kind of blurry.  She started talking about what defects could possibly be related to the VSD and the pics she could get and she rambled off a bunch of stuff you would think I would remember but I don't.  Then she launched into isolated cardiac defect vs. part of a larger syndrome.  Oh, thanks for that, because I'm not having enough trouble sleeping at night.

So we left the office a little blindsided.  I limped back to the van with Jeremiah (I had banged up my right foot pretty good the night before) and sat in silence until we made it out of the parking garage, then I pulled the cardiologists card from the pocket of my purse and burst into tears.  Jeremiah told me to call and make the appt and I told him I just needed to cry first.

The problem with all this is that I'm a nurse.  And I have a vivid imagination and my brain likes to wander off on it's own.  So I'm picturing all the things that could go wrong.  My mind jumps ahead to August and I'm picturing my little girl in an isolette with a nasal canula and cardiac leads attached to her little body.  Don't get me wrong, out new NICU at work is nice, and the nurses are awesome, I just don't want my kid to be one of their clients.

I called my OB on Thursday and we talked for a long time on the phone.  I told her I didn't want to be a needy anxious patient, but I needed someone to talk me thru my thoughts.  I love my OB, she spent forever on the phone with me and I felt so much better after talking with her.  We saw the cardiologist today, my daughter is still being camera shy.  They were able to get slightly better pictures, but we're going back in a month to try again for an even better view.  I don't feel much different after our appt today, but I don't feel worse.  We didn't get bad news, but we really didn't get good news either, we kind of got no news.  Which in this case, I think no news is good news.

So now we wait.  And we try to relax with this heart defect thing in the back of our minds.  And I really don't feel to bad.  It's weird, but I'm not to worried.  In a matter of a weeks time I went from fearing that our daughter might have some syndrome and spend weeks in the NICU to something less scary.  She's most likely fine, she might have some issues, but hopefully she's won't.

Limbo is an awesome place to hang out, you should all join us some time.

Really though, Jeremiah and I are calm.  We're going to just wait.  Wait on God and try to be at peace with that.  That's a huge thing to undertake.  I know there are lots of people praying for us, so that's probably where the sense of peace is coming from.

I'll post updates here and there.  Check back from time to time, it may be worth your while!

Also, Abby is THRILLED to be having a little sister.  Absolutely thrilled.  Eli is bummed, he was hoping it was a dump truck.

Little test strips everywhere

So I'm cleaning out my purse the other day and among all the gum wrappers and scraps of paper in the bottom are 5 used test strips.  I emptied the laundry hamper: test stip; I cleaned out the van: test strips; my pocket: test strip, kitchen floor: test strip; Abby's backpack: test strip; bottom of the trash can in the playroom: 4 used test strips!  They're everywhere!  And they drive me insane!

I guess when you use 6 or 7 strips a day some of them are not going to find their way into a trash can, and they can really pile up after a few days, but, come on, they're everywhere!

So this blog will be all about me ranting about diabetes.

I hate diabetes.  It's stupid.  Period.

Abby was diagnosed when she was 21 months old.  She is now 5.  There is no cure for diabetes (yet).  When she was 3 years and 7 months she had been diabetic longer than she hadn't been.  When she is 52 she will have lived with diabetes for 50 years.  There are 1.5 grams of carbs in an ounce of milk and a 1/2 cup of blueberries is 10 grams of carbs.  These are the things that run thru my head in the middle of the night and during the day.  I count goldfish crackers, I weigh fruit, I measure cereal.  Day in day out, I have the routines that we must stick to.  I add up the carbs, I measure out the insulin, I poke my little girl in the butt.  This is our life, it's mostly routine and mostly it doesn't bother me.

Most of the time.

Every so often I get into a funk.  It happens around Christmas every year.  I send a Christmas card to the nurse who discovered Abby's diabetes.  That gets me thinking about the day she was diagnosed.  What a whirlwind.  Most of it is a blur, but some snippets of that day are crystal clear in my brain.  I remember trying to remain calm in the car as we drove back to the Barbara Davis Center and praying that it wasn't diabetes, then ransacking my brain for what else could cause her blood sugar to be so high and praying it was diabetes instead of some form of incurable cancer or something.  There are times when I just get tired of the whole diabetes thing.  Checking blood sugar, keeping a log, counting carbs, drawing up insulin, it gets a little old after awhile.

But then, sometime during my self pity cycle I start to think about how lucky we are.  How blessed I am to have a daughter with diabetes.  Before 1921 there was no injectable insulin and my daughter would have wasted away and died before our eyes.  She has one of the most well know and most researched diseases in the world.  There are celebrities with diabetes and they host charity balls and fundraisers.  Her teachers and school will probably have had kids like her before.  It's not incurable cancer, she isn't lying in a hospital bed somewhere or confined to a wheelchair.  She runs and plays and acts just like every other kid.  Yesterday she went to a birthday party and ate cake with all the other kids.

Sometimes she asks me why she has diabetes.  My answer is always, "because that is what God has planned for your life."  It doesn't go much past that answer right now.  Someday it will.  As Abby gets older and starts to take more control of her disease and she has to come to terms with it she will discover why she has diabetes.  When the time is right, God will reveal it to her.  I would kind of like it to be cured before she has to contemplate it to much, but I'm not holding my breath.

This summer she gets an insulin pump.  At least that is what we're praying for.  That should make life somewhat easier.  And maybe change my whole outlook on stuff.  Not to mention give Abby the most expensive accessory she may ever have.  Whatever happens in our future I know that God has blessed us with our beautiful little girl and He knows every second of her life, good and bad.  He is in control and that makes me feel a whole lot better.

Now excuse me, I see a test strip on the desk I have to throw away.