We survived

We all made it through my first day back in the office.  I was soooo excited on the way home to see Livvy that I would even compare it to a puppy getting to go outside and play.  Of course, Murphy's law, I scramble in the door, throw all my stuff down only to find her napping away in her swing.  Since I'm not once to wake a sleeping baby, I just sat there and looked at her for a while until I could finally pick her up.  She had a great day with Grandma, but we're still seeing flecks of blood in some of her diapers in spite of my dairy free diet so now we'll be going to a pediatric GI specialist on Tuesday. 

Later in the evening I utterly depressed myself with the thought that my mom is going to be seeing my baby more than I will on a daily basis.  I was jealous, angry even that there are people out there that someday Olivia will prefer over her own mother.  I know having family watch her is the next best thing to Brian or I, but ughhhh at that moment I just really felt like screaming.  I want to be back at work because I like the sense of independence and purpose that it gives me but then I want to be at home to see Olivia reaching milestones, and I want to be the one that's taking her to all her appointments.  Plain and simple, right now I pretty much want it all.  Now sitting back and reflecting on it, there's a whole lot of "I" there and not much "we".   So I will say that Olivia wants her Mommy at home with her and going to all her appointments as well. Now that's two votes! 

Time with our baby girl is so precious and while I certainly want to believe that she has a whole long life ahead of her where she is going to drive me so crazy sometimes that I want to send her to live on a different planet - I'm not convinced yet.  The Glenn is looming ahead of us and she's been doing so well but it's a new surgery with new obstacles to face and I'm not resting on our laurels.  I look at this surgery just as risky as the Norwood even though the survival rates are better.  We could always be on the unlucky end of those numbers and I won't ever forget that fact.  Enough gloom and doom from me today, it is a beautiful day and hopefully Bri and I will be ever to take our little missy for a walk tonight.

Back to Work Mommy!

Well I did it, I'm back to work.  I woke up about fifteen minutes before my alarm this morning in anticipation of starting my day.  It's funny, as I was getting ready this morning it didn't feel all that different from pre-baby routine.  Then again, it helps that Olivia was sawing some serious zzz's while I was showering and even when I kissed her and told her I'd see her later today.  I'm super sad of thinking about the fact that I'm not going to be there at all today and she could be looking around for me throughout the day, but really she goes with anyone so I needn't worry.  She's in the perfectly capable hands of my mom who will call me should she have any questions or concerns. 

Still...I may reward myself tomorrow with a trip home for lunch to see my little munch and smother her with kisses. 

Happy 3 Month Birthday!

Three months ago I had already been in labor for close to 40 hours wondering when I was ever going to meet my baby.  Finally she came out quacking like a little duck all chubby, pink and absolutely beautiful.  We spent one day short of four weeks in the hospital and even that seems like a distant memory. 

Olivia has now been home for a little over 9 weeks.  She's been to her daddy's graduation, a family picnic, more Costco trips than I can count and she is thriving.  Her favorite toys right now are her hands and feet which she's really loving.  Right now she's been laying in her pack n play for the last twenty minutes completely content watching herself open and close her own hands.  Talk about cheap entertainment! 

We know her leg is still bothering her from Friday's cath, but she has done better than I expected.  Our focus this week is to get her back on track with packing on the pounds, working on her activity mat and getting some much needed tummy time.  Sadly tomorrow I go back to work full time, but I think it will be good for all of us to get on a more regular schedule.  I am lucky that my office is only 15 minutes away and I can come home for lunch if I'm having Livvy withdrawl. 

Happy 3 Month Birthday Olivia!  Mommy and Daddy love you more than there are stars in the sky.

Cath Results

We have been in recovery with the Munch now for about 2 hours and all is well.  She was super fussy when we first came in and her poor little voice sound like that 80 year old woman that's smoked all her life once again.  The nurses explained that she was probably parched from being on the vent and wanted us to start giving her Pedialyte.  It was slow going since she's never had it before.  After she had about an ounce she got extremely fussy and threw it all up but had a few nice burps in there too.  Apparently she just had some extra air in her tummy that she needed to get out in a bad way.

The results from her cath were very positive and didn't require any intervention.  She does have some narrowing of her left pulmonary artery but we've been told that's pretty common with these hypoplast babies.  It's something that they will monitor closely and if necessary balloon open during the cath getting her ready for the Fontan (surgery #3) because they will go in from a different entry point.  There was a small difrence in pressure readings from the top of the aortic arch to where the arch is grafted on the Sano shunt, but they didn't see any narrowing so there was nothing to balloon.  Again, these are things they will watch but no cause for alarm.

Assuming her vitals and subsequent feedings go well, we will be out of here around 6pm tonight.  I for one cannot wait because she just looks uncomfortable with all the wires and her poor little arm strapped to an immobilizer.  Don't worry Olivia - Mommy and Daddy are going to bust you out of here!

Cath Update #1

We just heard from one of the nurses that's in with the munch.  They were able to find a usable vein in her right leg so that's exciting.  She's sleeping peacefully, her vitals are stable and they're already collecting data.  At this point we can't ask for a better report than that.  It is too early to say whether or not she will need any intervention. 

I am back from my post-op check.  They were nice to scoot me through the process so I could get back to the waiting room with Brian.  All in all I am the picture of health. I'm back to pre-baby weight, sadly its just distributed a bit differently right now. 

Hopefully they'll be wrapping up the cath within the next hour or so and we'll have more news.  Until then...

She went in all smiles

Well leading up to this morning we woke up at 2:30 am to feed the munch a bottle to beat the 3am deadline.  Then I woke her up again around 4:45 to give her some Pedialyte before the npo (nothing by mouth) order of 5 am.  She was really too sleepy to be interested but she was wide awake by the time I was registering her here around 6:30.  In fact she started fussing so much that Brian and I thought we were going to be in a world of trouble.  Apparently Miss Olivia has plans of her own once again.  Once they took us back to the prep area, she was as calm as a cucumber.  Seriously, she let them all listen to her with their cold steths, put on the pads for monitoring her vitals, etc and she just cooed and smiled all the way around. 

We felt like traitors kissing her right before they wheeled her into the cath lab.  I'm expecting to be greeting with a vicious frown when we see her again.  They said to give them a couple of hours for the whole procedure to be completed, so hang tight we'll post info when we can.  Right now our biggest concern is that they find a usable vein in either leg so they can avoid using the femoral artery and that this is purely a diagnostic cath.  If those two things go well, then we're good to go for today.  I need to get moving so that the MFM group can tell me that my incision is nicely healed and stop harassing me to visit them. :) 

Heart cath is set

Well we are on our way down the road to surgery #2 - the Glenn.  Olivia is set to go in for her heart catherization on Friday 6/25 at 6:30 am.  While we're waiting, I will be running over to the MFM group to have my post c-section appointment, only a few weeks late - haha.  If the cath is entirely diagnostic meaning that they just get pressure readings from her veins and arteries, then there is a chance we will be able to go home on Friday night.  If they need to do any intervention such as placement of coils, etc then we will need to stay overnight for observation. 

As of right now the little missy is in her swing really snoozing it up.  Yesterday we finally made the call at the behest of the cardiology staff to discontinue the use of any formula soy or otherwise in the breast milk.  I am still withholding dairy products from my diet, but so far so good.  We are just at the 24 hour mark right now without any blood in her diapers.  I'm currently drinking Almond milk as I'm typing this entry, so at least I can still have cereal in the mornings as the milk is really pretty tasty.  Some people kind of grimaced at the thought of going without dairy products. Don't get me wrong, I will miss my recent ice cream and DQ splurges, but if something so simple can alleviate Olivia's discomfort, then I'm more than willing to do without. 

If for whatever reason we still see blood later this week prior to her cath, Brian and I have requested that they do a scope or MRI to locate the source of bleeding while she's knocked out during the cath.  While we don't want to subject her to any additional invasive tests, it does give us comfort to know that she would be under sedation.  Of course we realize that the cath itself carries inherent risks and there have even been babies that pass away during the procedure, but we feel that Olivia is doing quite well and will come through this just fine albeit cranky and sore from being poked and prodded.  One of my hopes for future medical technology is these screenings will someday be replaced by a scan or other wonderfully outrageous medical gizmo that won't require any pain inflicted on the patient big or small. 

Father's Day

First a quick update on Olivia...we are seeing a decrease in the frequency and amount of blood, but an increase in her overall fussiness.  She is clearly uncomfortable after a bottle and refuses to let us burp her in any position so we are really relying on Mylicon as of right now.  Other than the 15 minutes after a bottle, she is her normal happy self.  Brian and I were able to go to a concert on Saturday night to see Keith Urban, the Dixie Chicks and Eagles.  It was amazing, but we were definitely anxious to get back to the little one for the night. 

Olivia gave her daddy the a much appreiated gift for Father's Day - the gift of sleep.  She went an entire eight hours from Saturday to Sunday and Brian woke up so refreshed and in amazement that she slept the whole night away.  I framed the pictures that I had done with Olivia as Brian's gift and he loves them.  In fact I was so excited to give them to him that I showed him the finished product last Wednesday when I picked them up from the studio.  Obviously this Father's Day was extra special for us since it was Brian's first and Olivia was home with us to celebrate the big event.  I have to give Brian a lot of credit, he balances work and then comes home and gives me a little break from caregiver most nights.  On weekends he wakes up with her for the feedings and diaper changes.  In the morning he makes sure that he goes over to Olivia to talk with her for a few minutes before he leaves for work.  There isn't anything he wouldn't do for her (which I'm sure will become a negative when she's older and more manipulative), but for now he truly enjoys every minute that he gets to spend with her and is always trying to make time for more. 

As for my own dad, I was able to spend the day with him as well since we had both sets of grandparents, uncles & aunt at our house for a BBQ.  Both Nonno & Grandpa got a picture collage of Livvy and they are already scheming which pictures to take down at their respective houses to make room for the princess.  I realize how special it is that both Brian and I have parents that are still married and living in the area.  Adding to that, I'm married to my best friend since the age of fourteen and am still a Daddy's girl at my tender age of twenty-something.  I have been very blessed to have had such a wonderful father for all of my life and to have found someone who will be equally as wonderful to our own children.  Happy Father's Day to all!

Rude Awakening

     I don't remember if I posted last week about our bout with the stomach flu.  Despite all our precautions of keeping Olivia away from little kids and out of crowded public places, I ended up getting a stomach bug and passing it on to the little one.  It was totally disheartening, by the time I realized that I was sick it was too late and she ended up having diarrhea for four days.  Amazingly enough she still managed to put on almost a pound anyway so she got a gold star.  The downside was that all that bathroom action left her little rear end raw and created a small tear where there were minute amounts of blood being passed.  Any time you start seeing blood in your baby's diaper, you panic.  We were advised to hold off her aspirin and give it a weeks time to heal.  No problem, we made good progress and as of last night resumed the aspirin since things were much improved.
    Unfortunately, things were not really healed and around 3:30 this morning I was in the middle of a routine diaper change to find a lot of blood there.  Livvy was sleeping through the whole event, but I went and woke up Brian to have him take a look and decide course of action.  We decided there was no point to rush over to the hospital in the middle of the night if she was still eating well, pulse ox looking good, and not running a temp.  The story changed though when I changed her around 6 and found only blood in that latest diaper.  I went off paging the cardiology staff at Hope and getting the ball rolling.  They advised that we hold the aspirin indefinitely and call our pediatrician's office to get in for a visit immediately so they could confirm the tear or decide if we needed to do some invasive investigation as to the source of the bleeding. 
    Thankfully the pediatrician got us in right away, tear was not confirmed but they did a blood count and Olivia is looking excellent.  The bottom line - no pun intended is that he feels that her formula that we are mixing with my breast milk is aggravating her stomach lining and causing the bleeding; so our current fix for the situation is to switch Missy to soy formula.  I tend to disagree because she had been on that formula mixed with breastmilk since we came home and we went weeks without any issues, but I am willing to try whatever so that I don't see any more blood like we did this morning.  Thankfully Olivia is completely unaware of the scare she gave us.  She's still smiling, all vitals look great and she's eating like a horse! 

4 Years Already?

I have spent a lot of time thinking where has all the time gone.  This September it will be Brian and my ten year high school reunion, Olivia will be twelve weeks old on Saturday, but today marks Brian and my four year anniversary.  Pre-baby anniversaries were a big deal and we have taken a trip somewhere fun and exciting each year.  This year, it's pretty much like any other day.  I'm here at home with the Munch(kin) and Brian's off at work.  We're cooking dinner at home tonight, but are going downtown for a concert on Saturday to celebrate.  No exciting trip planned or lavish dinner out - we'll be hanging out here at home to celebrate with Olivia and I'm more than okay with that.  Maybe if we're living really on the edge and the little Missy is in a decent mood we'll go out and get some ice cream tonight. Woohoo.

We have much to celebrate as a couple and more importantly as a family.  Here's to another fifty or sixty years of our crazy lives.  To my best friend Bri - Happy Anniversary, I love you.  Oh and by the way, if you want to surprise me with a really nice trip next year, who am I to refuse? :)

Another Milestone

Today marked the last time that our at home nurse Nancy will be making a house call.  Olivia is doing so well by her standards that she is discharging her from their home services; and from what I've been told she won't need to come back and visit us after the Glenn as the babies are traditionally more stable.  We shall see, I'm not counting any chickens before they're hatched.  Still no word from Hope yet as to a date for the heart cath, but hopefully we'll hear from them tomorrow or Thursday.  I'm not looking forward to it, so I don't want to call looking to get her in, yet on the other hand I do have to go back to work soon and want to try and have it done before I'm back in the office. 

In other news, I've been back into all the mom's boards for heart babies and a lot of the recent discussion has been a lack of research dollars for CHD's.  It is a common belief and I tend to agree that some of these babies like Olivia look so healthy and normal that people find it hard to believe that anything could ever be wrong with them.  Since the kids don't look the part, there is less interest in donating money towards the cause.  Now, let me explain, I by no means want Olivia or any other heart baby to look sickly to draw up interest or money for research.  Nor do I think that childhood cancers deserve any less money than what they are given annually, but I wish I could come up with some sort of non-exploitive way to draw awareness to how serious CHD's can be on kids and adults.  I read a figure today that I couldn't verify but nevertheless I will post here because it was eye opening.  The claim is that there are twice as many deaths annually from CHD's as there are from childhood cancers in any patient from birth to age 18. 

Lastly, I meant to bring it up in previous posts, but if any of you are interested in helping out your local Ronald McDonald House - you can collect pop tabs and take them to the facility.  They take the pop tabs and get reimbursed for the pure aluminum to raise funds for the houses.  Every little bit helps!

Catching Up

     Time is seriously flying by and two weeks from today I'll be back in the office at work.  Looking back at the past few months, I can barely remember life before Olivia joined us.  The hospital stay feels like a blip on the radar and the past seven weeks seem like they have been an entire lifetime.  That's right, seven weeks here at home!  I hate to speak as to how well Olivia's doing because I don't want to jinx anything or raise our hopes to an unrealistic level, but she is really great.  We go to more doctor's appointments and give out medicines more than the average parents, but other than that, our lives are not so different.  We are thankful for this normalcy.  In fact, I think that I had prepared myself for worse up to now that I still call all my cousins who are veteran moms to ask if something is normal baby behavior or is it something I should be worried about as a heart mom. 

   9 times out of 10 they tell me everything is completely normal and I go on with our day.  Now that she's awake more, Olivia is taking everything in.  She has a fascination with lights and fans and will look at them for extended lengths of time which is great for Brian and I since we can get a lot done when she's distracted.  When I'm driving, she's staying awake for longer periods of the drive and when we're stopped at a light I see her eyes looking around and studying herself in the mirror that we have above her car seat.  Yesterday I held her up to a mirror and was talking to her and she burst into tears.  I like to think she was jealous of that other baby her mommy was holding in the reflection.  She's very generous with her smiles and is really cooing up a storm in her good moods.  7-9 PM in our house is still a very taboo time, but hopefully she will outgrow this witching hour soon. 

   Currently she's sitting in her bouncer next to me periodically opening her eyes to look around and deciding that I"m too boring to be blessed with her attention so she goes back to sleep.  I'm sure she'll wake up screaming in a little while while I'm cleaning bottles.  Her new favorite thing to do is start having a hissy fit when she's awake and there's no one in her line of sight.  Oh well, as for now I can only celebrate the fact that she slept from 10:30 PM until 6 AM today.  Brian was so wide awake and perky that I thought I was going to have to tell him to take it down a notch.  Amusing, as it turns out he realized that he spent too much time talking with Livvy before he went to work that he completely forgot a lunch.  Oops!

6/11 Appointment at Hope

Hi Everyone,
  Sorry Mommy has been bad about getting on here to update right after our appointments.  Friday's appointment was relatively short, partially due to the fact that Liv decided that she wanted to sleep through most of the visits.  She is weighing in over 11lbs, height is sketchy since their record keeping has been wrong for the past month and head circumference is right on track.  They are thrilled to be seeing her in the 50th percentiles for each category at 11 weeks old.  She is still on formula fortified breast milk in hopes of continuing to beef her up before the Glenn.  What's even more impressive is despite our best efforts she got a touch of the stomach flu from me and still managed to gain almost a pound in the two weeks between our last visit. 
    When talking with Dr. Husayni  it sounds like our next doctor's appointment at Hope will likely be replaced by a heart cath to determine her readiness for the upcoming Glenn.  It will be somewhat invasive as she will need to be under general anesthesia, on a ventilator and they could potentially put in stents or make some cauterizations depending on how her veins and arteries look while they're in the process of the cath.  The biggest bummer of this means that it will be an overnight stay at Hope to have the procedure.  I'm sure Olivia will be chomping at the bit after that little stay to get the heck out of there.  Little does she know we're planning the Glenn for late July/early August.  
  All of this planning and assessments went on while Olivia just slept away the morning in my arms.  I fed her while they were taking her BP and Pulse Ox and it was just easy times after that.  It sort of worked out in Olivia's favor actually since the doctors and therapists didn't want to disturb her sweet slumber and left her alone.  I'll have to make sure that we time out her bottles that way in the future appointments so that maybe she'll catch more breaks like that on Friday.  Anything we can do to make the experience a little less stressful for her makes it better for all of us. 
 

Happy Birthday Nonna!

Hi Grandma - Olivia here!

  I just wanted to wish you a very happy birthday.  Mommy explained to me that we spend birthdays with the people we love, so I hope you enjoyed that her and I went out to dinner with you and Grandpa yesterday.  I'm sorry that I fussed here and there, but I was hungry.  I'm sure you understand what I'm saying seeing as how much all our family loves to eat.  The doctors keep telling me that I need to eat lots so that I can grow big and strong. 

  Thank you very much for all that you do for me.  Mommy talks about Great Grandma to me and says how much fun she was when Mommy was younger.  She says that you're just like her with me.  I'm excited, how old do I have to be to play those games of domino and loteria?  Mommy also told me that you have a birthday month.  How come and how old do I have to be to have a birthday month of my own?  Anyway, it sounds like a good time!  Happy Birthday!

Love,
Olivia

An Olivia Weekend

I tried to post this Sunday night and Monday morning, but was having technical difficulties.  This past weekend was very filled with Olivia related events.  On Saturday we went to our first Heart Institute picnic where we ran into some families that had been hospitalized at the same time that we were as well as greeting some of our favorite doctors.  We have our very first picture of Olivia with Dr. Ilbawi which I must admit is a little overwhelming.  There are few people out there that can look at a picture of themselves with the person that is responsible for saving their lives.  Yes, Brian and I gave her life, but Dr. Ilbawi and the staff at Hope are saving her life and the lives of other children each and every day.  The picnic was flooded with kids and their families and I took a look around to take it all in.  At least one child from each family had some sort of heart procedure at Hope and obviously there are many children that were either too sick to attend or sadly didn't survive.  In spite of that sobering fact, it was quite hot out and Miss Olivia earned her first little tan.  I will certainly have to make a note to lather on the sunscreen in the future.  Happily she does turn brown instead of red like her daddy.

Sunday was the 5K walk for Hope.  The proceeds of the event went to Hope Hospital and the Hope Ronald McDonald House.  There were many large teams there remembering those lives lost and those that continue to fight their illness daily.  Team Olivia as we informally dubbed ourselves was no slouch either, she had most of her grandparents, lots of Aunts and an Uncle all in attendence for the cause.  An extra round of applause to her Tia's that are somewhat known for showing up in a less than timely fashion.  They were all out there well before the start of the walk, so cheers to them!  Next year we're going to try and recruit more walkers/runners and have team shirts created for the event.  Below is our team picture, I think the most rested person is Livvy since she snoozed during most of it while I pushed her along!

Precious

I typically mock my mom when she calls Olivia "Precious" as a nickname, but really I have to agree with her.  There's nothing like laying next to her during a nap or when she's just lounging around to take it all in.  The smell of her hair is so sweet, and it's so fine that it tickles my nose.  Her skin smells like baby lotion and it's warm and smooth as possible.  She has the longest fingers that it looks like she could play a piano already.  Her toes are long and monkey like - grabbing blankets with them.  As she gains weight they too are starting to plump up.  When she smiles, she crinkles her eyes and sometimes she makes a laughing sound and jumps because the sound seems to shock her. 

She is so beautiful and we are so happy to be celebrating six weeks at home with her today!  I'm sure tonight her and Daddy will celebrate by watching the Hawks game - I have been told that she's a big fan and won't sleep well unless they win.  Go Hawks!

Might as well have been a Monday

Olivia slept another 9 hours straight last night!  We have found that when she's outside for long periods of time, she will sleep really great two nights later and she didn't disappoint.  She was all smiles this morning after a diaper change and bottle, but that pleasant mood quickly faded.  It's like she knew that soon we would be headed off to the ped's office for her two month check up. 

I think that today's appointment was our worst ever at a doctor's office.  First were the measurements which are normally no big deal, but today they were a very big deal and lots of crying followed.  I thought that I had packed wisely by bringing a bottle with us so during some down time between the doctor and nurse visits, Olivia could get her mid morning snack.  She was a happy little camper after that except that she was still hungry and smacking on her pacifier.  Then came the vaccinations.  Both the nurse and I underestimated the impact of the first vaccine which was given orally.  Either she was too sleepy to get it or it didn't taste good, but either way her violent gag reflex got the better of us and up came the vaccine as well as most of her bottle.  After take 2 was just as unsuccessful and the rest of her bottle came up, we gave up on that vaccine and moved on to the shots.  She screamed so loudly and I'm pretty sure jumped off the table on the second shot.  Happily she stopped crying as soon as I picked her up and off we went back home.

This afternoon Little Missy spent most of the day snoozing which I credit to the Tylenol that I gave her to ease some of the discomfort from the shots.  Unfortunately I expect that Olivia and I will be spending some quality time around 2-4 am when she's wide awake from all the sleep earlier today.  Right now Brian is busy pacing around the kitchen while she's fussing so she can gaze at the lights and they're making me dizzy with their laps.  I think Mommy is off to find some ibuprofen to ease a headache of her own!