7.31.2012

Zoe Grace: Meltdown

At 11AM this morning, I found myself sitting in yet another doctors office waiting room feeling surrounded by germs.  My approach to germs has drastically changed since Zoe came into the picture.  Sometimes I feel borderline germiphobe.  Yes before Zoe I made sure that mine and Londyn's hygiene was in check and we washed our hands regularly, but now I carry at least one if not two bottles of hand sanitizer at all times.  Sometimes I wonder if people see me as too snooty-falooty to share my child with them because I am so hypersensitive about having people near her.  In the last few weeks we have had several encounters where complete strangers have come up and grabbed her little hands, patted her back or just stuck their foreign face right in hers.  Not cool.  I know people mean well and just want to get in on the cutest baby alive, but seriously... it amazes me how some people think it's totally okay to touch an unfamiliar baby in the middle of the clearance racks at Target, while waiting on our table at Rose's or in the produce section at the market.

For those that are Big Bang Theory fans... I often feel like Sheldon at the hospital.

Back to Zoe...

Our first appointment of the day was with Dr. Rollin, our pediatrician.  I just love her and am so sad that this was our last and final appointment with her, as she is moving too far for us to see her anymore.  Luckily, we will be switching care to a pediatrician named Dr. Kao, who is a former Neonatologist and fairly new to the Sherwood Providence clinic.  After Zoe's exam with Dr. Rollin, she introduced us to Dr. Kao.  Apparently Dr. Rollin has already been keeping Dr. Kao up on Zoe's case, which is a huge relief.  I feel much better about the switch and feel confident that Zoe is in another pair of great hands.

Zozo weighs... drum roll please... 11 lbs 1 oz.  Way to go ZOE!  She has inched up to the 10th percentile, which is a huge feat for a baby who was in the 2nd percentile just 2 month ago.  We decided to bring down her high calorie diet from 27 calories per ounce to 24 calories per ounce because she constantly has a very painful diaper rash which we believe to be the result of her constant poopy diapers.  She will continue to get 700 mils per day at 35 mils per hour by enteral pump.  I asked Dr. Rollin about the bit of bleeding from the site of Zoe's G-Tube and she said that it isn't abnormal, especially because she does tug at it sometimes but if it persists, to call our gastroenterologist.  As for length, Zoe has reached 23 inches.  We are scheduled in three weeks for a 4 month follow up with Dr. Kao and she also mentioned starting weekly RSV vaccinations in the Fall as Zoe is very susceptible to RSV which she absolutely cannot afford to catch.

{Zoe gives her weight gain a thumbs up}

Fortunately our pediatricians office is just two minutes away from home, so I stopped at home for 20 minutes and then headed out the door to the hospital for our appointment with Dr. King, our cardiologist.  I have been so anxious about Zoe's heart lately as I keep hearing about parents and families who have lost their babies to congenital heart defects, similar to Zoe's case... if not the exact same.  I know these poor families need support, but I just don't have it in me to give it or hear about it right now.
After Dr. King did an echo, he gave me the news that her Atrial Septal Defect (common AV valve) has worsened and is leaking more than before.  We have known from the beginning that the leakage could potentially hinder her from having either of the two remaining surgeries needed to allow her right ventricle to do all of the work properly.  Dr. King said that the Glenn procedure (2nd surgery) sometimes has a chance of repairing the leak on its own because the right ventricle isn't working as hard, allowing for no leak to occur.  If it doesn't repair itself after the next surgery, Zoe will no longer be a candidate for the Fontan (3rd and final surgery) and will then only have the option of transplant.  I get so emotional when I think about transplant because it is not only a very risky operation for our child but also heartbreaking to think of the price that is paid for the transplant to even take place.  I can't even begin to wrap my brain around the idea that my child's life could be saved, only for another mother to lose her very own.

To top this all off, Dr. King also informed me that Zoe's right ventricle isn't functioning as well as it was a month ago and he thinks it is the cause of her stroke.  Considering her right ventricle is all that she has, this is a terrifying discovery.  Since the stroke, I have been more concerned about the developmental delays that could result, but never once thought it could be damaging to her already struggling heart.  The most numbing part of it all was when Dr. King told me that if the damage to her brain is too severe, she would not be a candidate for a heart transplant.  We will see him back in 3 weeks for another echo and schedule her next MRI and open heart surgery 1-3 weeks after that..

I walked out of the office holding back tears.  By the time I was on the freeway, it was waterworks.  If my sleeping baby hadn't been in the backseat I would have screamed.  I wanted to scream at the top of my lungs... WHY??!!  When does she get a break?  When do WE get a break?  Every day she is uncomfortable and her body works so hard to just be.  She has purple polka dots all of her legs from the shots we give her twice a day.  She has a tube sticking out of her belly and a feeding pump that follows her around like a shadow.  She takes more medications than a drug addict and breathes about as hard as a marathon runner, even when she's asleep.  My entire being just aches to take it all away from her and I can't.  I know she is a fighter and has endured so much in her almost 4 months, but I just wish we could leave one appointment with the doctor saying "Everything looks great!  We'll see her back in about 6 months."  Instead, I always feel more overwhelmed and scared than I did before.

I am typing right now with the most beautiful view of a perfect and precious sleeping baby.  In my heart and soul, she is absolutely flawless.  At this point, all I am running on is love.  Love for my baby... love for my eternal family... and love for my Father in Heaven.  She is and has been the greatest miracle I have ever known and I have to believe that she will make it through all of this.  WE will make it through all of this.


7.30.2012

Zoe Grace: EEG

Zoe had an appointment for an EEG today, which is the first test on her brain since it was confirmed that she had a stroke only one month ago.  I didn't sleep very well last night because I was so nervous for the results, but the appointment went well and the technician said that the results would be available today and if anything was emergent, we would know by this evening.  It is 10:30pm and it is a huge relief that we haven't heard any bad  news.  

Poor Zoe.  Every time we drive up to the hospital for an appointment, she spends the entire commute coughing and spitting up.  I have learned to take several burp cloths and extra clothes.

After I took Zoe out of her car seat, the last thing she wanted to do is be swaddled and held still while a bazillion leads were placed on her head.  But, was a trooper and as cute as can be throughout the entire process.
It takes about 45 minutes just to get all of the measuring and leads secured.

By the time he was ready to start the test, Zoe dozed off right on cue.

Yay!  She was so happy and rested when the test was finished.

I just love her cheeks and chubs.  I can't help but smooch on her all day long!

Random photo: Lulu and Zoe watching Go, Diego, Go
This was one of those moments that felt so NORMAL.  I love NORMAL moments.

Tomorrow morning we have her 3 month well child check with our pediatrician and a cardiology appointment in the afternoon. I can't wait to see how much weight she has gained and hopefully get a better idea of when Dr. King has her next heart surgery in mind.

7.21.2012

Perfectly Normal

Today was a perfect Summer Saturday.  We were out the door by 9:15AM (meds done, shot given, feed started, everyone dressed, stroller and chairs loaded in the car) and heading to the annual Sherwood Robin Hood Festival.  I love the RHF and have been going ever since I was little.  The parade is filled with community members, businesses and organizations... and of course the most entertaining are the Sherwood residents who run around town in their "authentic" medieval garb once a year without looking completely nuts.  






After the parade, we ALWAYS walk into old town for Firemen's Chicken.  This is a tradition that was started by the firemen in Sherwood and has recently been carried on by the Sherwood Rotary Club.  Even though we probably inhaled an entire weeks worth of suggested sodium intake, the finger-lickin' goodness did not disappoint.  

We then headed home for some much-needed naps, yard work and dinner... all as a family.  Days like this make me feel normal... which is a rarity at the moment.  Glimpses of "normal" are tender mercies and I cherish these precious moments of all of us together.

7.20.2012

Zoe Grace: Rash Check

At 10AM this morning, our Community Health Nurse Amy came to visit.  She is such a sweet person and we are really lucky to have her.  I basically went over everything that has taken place since we were discharged from the hospital and the plans we have with each of Zoe's doctors.  She usually measures Zoe's weight and length but since we had a check yesterday, we didn't want to get Zoe all worked up and do it again.  Amy is so helpful in connecting us with all of the right resources. Just last week I called her to see if she had any information on in-home physical therapy and she was able to give me the number for a company called Beyond the Clinic.  They take our insurance and service our area!  Our first appointment is next week!  Without even asking, today she offered to help us start the process of applying for Supplemental Security Income (SSI).

At 11:30AM Zoe and I headed to our pediatricians office to have Dr. Rollin check a rash that she has that goes from the right side of her face, down her neck and upper back.  Luckily, Dr. Rollin says it looks like it is just a combination of baby acne and heat rash.  Considering she sweats so much because of her hardworking heart, the heat rash makes complete sense.  Zoe has also been unusually fussy over the last couple days and Dr. Rollin thinks that since Zoe has grown so much, she probably needs an increase in the volume of her feeds.  We will now be running 700 mils of 27-calorie Enfamil formula over 35 mils per hour.  Hopefully her fussiness is due to just needing more food and this 5 mil/hour increase will make her a happy baby again!

After every appointment, I leave feeling overwhelmed and in over my head.  I walk out of the door with a long to-do list... appointments to make, changes in meds, feeding regimen, exercises to do with her and much much more.  It is tough not to feel defeated sometimes by this new way of life.  We have become hypersensitive about every little cough, sneeze, long nap and cry.  I often have to do what I tell my 3 year old and just take a deep breath, enjoy my kids at this very moment- no matter what shape they are in and just love my family.  I know that it won't always be like this and that she WILL grow and she WILL thrive because she is the strongest kid I know.  We will look back at this time in our lives and be better for it.  Until then, I just have to keep on truckin' along because I am a mom and that is what we do.

7.19.2012

Zoe Grace: Appointments

In the last 18 days, Zoe has been poked 57 times.  This includes all of the blood draws and the shots we give her twice daily.  She is covered in bruises and scars.  The good news is that she doesn't need another blood draw for an entire month, as we have finally found the right Heparin level at 0.35 mls of Enoxaparin per dose.

Last Thursday, we met with Dr. Fridge (Pediatric Gastroenterologist).  Zoe's weight was 10lbs. 3oz. and her gastrostomy tube is healing wonderfully.  The next step as far as GI goes is to replace her PEG tube with a Mic-Key button.  The button is more for convenience, rather than necessity because it won't be a long tube coming out of her belly anymore.  The button placement requires sedation, which always poses chance for infection, so we are going to wait until after the Glenn heart surgery.
I also discussed Zoe's nutrition with Dr. Fridge, because it` has become more apparent to me that Zoe will probably not breastfeed anytime soon or possibly at all.  I have been pumping for over 3 months, every 3 hours and it is just one more thing on top of everything else.  I was feeling guilty for even considering the switch because I would like to believe that my BM has benefited her.  But Dr. Fridge put me at ease by telling me that most mom's that don't breastfeed and only pump, usually don't even produce enough to last this long and that the first two months of milk production have the most nutrients and antibodies, which I am already past.  She recommended to stop pumping and slowly switch over to formula.  Hallelujah!  I still struggle with the guilt, but I have to admit not having to pump in the last 7 days has made my life just a little bit easier and less stressful!

Today was Zoe's appointment with Dr. Huffman (Pediatric Neurologist).  She weighed in at 10lbs 8.8oz and 22 inches long.  Dr. Huffman was impressed with her progress and all of her growth!  Zoe does have a new rash forming on her face, all the way down her neck and part of her back.  Dr. Huffman wants us to see our pediatrician tomorrow to make sure the rash is not a reaction to the Phenobarbital (anti-seizure medication).  She would also like Zoe to have an EEG done soon to look at the health of her brain and then an MRI in the future.  As opposed to Dr. King's thoughts on her next surgery being dependent upon the results of an MRI, Dr. Huffman doesn't feel that there is anything that could be seen on an MRI that would keep Zoe from surgery.  She is going to talk to Dr. King and come up with a plan.  She wants to see us back in 2 months unless we see any more seizure activity.

Life goes on and we ARE LIVING IT!

After our recent unexpected hospital stay, we are finally getting back into a routine and enjoying this beautiful Summer sun.  

I have always been an out and about kind of gal but to avoid germs and large crowds for Zoe's sake, we spend most of our time at home or with family. 

Lulu "playing" in the sprinkler... she mostly just runs around the water and not in it.
Zoe likes to chill in the backyard too!
We headed up to the farm last Friday and hung out at my brother's house with my nieces Mikayla and Emma and nephew Kyler.  Being in their pool was probably the most relaxed we have all felt in the last few months.  
 Mikayla got to hold Zoe for the very first time.


All of a sudden Zoe has become so much more alert and active.  She is reaching for objects and batting at toys, pushing with her legs and arms, and holding her head more often.  She is a strong girl in so many ways!

Daddy's Girl
 Londyn loves to call Zoe her Sissy

Holding her head up in the Bumbo

7.11.2012

He's at it again.

What do you get from the two pictures below? (A throttle control to a weed eater and an old drill battery)



If you said a homemade rocket launcher, you'd be correct.  His other projects were getting him no where and he needed a quick build to satiate the creative urge.  It's no surprise that Andrew likes to launch rockets ever since he was a kid.  He has always thought of different ways of launching the rockets rather than just using the supplied launcher in the kits.  So far this is Rocket Launcher 4.0 KISS (or Keep It Simple Stupid).  This is what the final launcher looks like with custom paint job, and he will soon be testing it, thoroughly.
It uses three switches that need to be on before the rocket will fire.  Each switch is also indicated whether it's pressed or not by the LED's on the side.  Here's what he'd say, "the switches are in series with the LED's in parallel between each switch so as to indicate each switches position while not interfering with the output, look I'll just draw it out real quick to clear it up..."

7.07.2012

Zoe Grace: Cardiology Appointment 7.6.12

Today was Zoe's follow up visit with Dr. King, our Cardiologist.  One of the issues I wanted to address was the dry cough that Zoe has as a result of the Captopril that she takes three times daily for her blood pressure.  Her cough has gotten significantly worse since we were in the hospital and when you combine that with her reflux issues, you get a lot of vomiting.  The poor thing has been just miserable as she is either coughing, gagging and spitting up or recovering from just doing so.  I have also noticed a huge difference because she isn't able to sleep easily during the night because wakes herself up coughing.  When she recovers from spitting up, she moans and whimpers.  You can tell she is in pain and so uncomfortable.  It breaks my heart that she can't get a break from discomfort, but Dr. King changed her medication to Lisinopril and we're crossing our fingers that she might have less of a reaction.  As with all ace inhibitors, a cough is the most common side effect... but I really hope that this will be a better option for her.

After the echocardiogram, Dr. King explained that the leakage from her Atrial Septal Defect has not increased (hallelujah!) and that everything looks about the same.  He did notice that her kidneys are looking larger than expected but he attributes that to the high calorie/high volume diet.

The only setback is that as a result of her stroke, it will be at least two months before we can consider surgery.  We have been waiting and working so hard to get Zoe's growth up so she can have the Glenn, which is the second of three open heart surgeries that she needs to give her heart a fighting chance for the rest of her life.  Zoe's weight gain has progressed beautifully, currently weighing 9 lbs. 14 oz. (gaining over an ounce per day) and if it weren't for the stroke, we would probably be scheduling her surgery very soon.  It is such a strange feeling to want so badly for your baby to have another operation.  The Glenn is so critical for Zoe because there is a good chance that this procedure will not only significantly lessen the work load of her right ventricle, but has a very good chance of also repairing her Atrial Septal Defect.  There is no surgical repair for the Atrial Septal Defect, but Dr. King has seen many cases where following the Glenn procedure, leakage from the common valve is no longer an issue.  The leakage from her common valve has always been a huge factor in Zoe's treatment because we have been told that if the leak increases significantly, she will no longer be a candidate in continuing with the three-stage surgeries and will then only have transplant as an option.  Transplant terrifies me because transplant is it... the last and only option.  Zoe needs all three surgeries to buy us as much time as possible, allowing transplant to be available in the future.

I don't want to see her go through any more pain... but the reality is that it is inevitable.  But she is a fighter... and has a strength within her than I cannot even comprehend.

Following our cardiology appointment, we took her back to Randall for another try at a blood draw to check her Heparin level.  After 4 nurses and 5 attempts, including IV team on Monday... I was extremely hesitant that the outcome would be the same.  I made sure to give Zoe her Lovonox shot at exactly 7am to allow for the most accurate result as the draw needs to be done exactly 4 hours from the dose.  I also kept her overly hydrated on a slow and continuous feed, all night and all morning.  Danielle from IV Team came in and was able to get plenty of blood from the very first vein she poked.  I was so relieved.  Zoe is so amazing.  She flinched a little bit at the initial poke, but didn't even make a sour face or a peep.  She just slept right through it.  Although I know this is a tender mercy, it makes me sad to see my tiny baby be so used to needles and pain.


At about 8pm tonight, the Hematologist on tonight called and said that her Heparin level was back and way too high.  She wanted me to skip her morning dose and she would send in an order to the pharmacy for a prescription of the new dosage to be picked up tomorrow.  She has currently be getting 0.25mls of Lovonox twice daily but the new dosage will be 0.1mls twice daily.  We will also need to take her in on Monday for another blood draw to see if the level is in the right place.


It is afternoons like today, when Andrew and I are snuggling both girls in our bed that I feel much needed peace and 'love at home'.  We truly are raising daughters of God... one day at a time.

7.06.2012

Fourth. Family. Food. Fireworks.

Our 4th of July couldn't have been better.  Lulu and I started the day off by heading to the ward 4th of July breakfast at Snyder Park.  We arrived a half hour late but still made it in plenty of time to partake of delish grub.  After stuffing our faces, Londyn played with her friends at the park.  Here she is with Kate on the swings.

After much needed naps for Lulu and I, we went to a family BBQ at my brother Eric's home.  I think we all voted unanimously that their house is the new party place.  Their backyard is amazing and so spacious!  It was such a relaxing evening and my sis-in-law Sarah added so many cute and patriotic touches.  Thank you Eric and Sarah!

Introducing... our Lady Liberty



And our little BIG Firecracker

It wouldn't be the 4th of July without a HK pinata... am I right?

Mr. GQ



Of course, Andrew led the firework because he is all about blowing things up.

Lulu has such sensitive ears that she would only watch the show from the bedroom window.

My favorite part of our family gathering was letting my nieces and nephew hold Zoe for the very first time.  Ever since we brought her home, we have been overly sensitive about germs and how fragile she is.  The timing was right as none of the kids are sick or have been sick recently and Zoe has grown so much in the last two months.  We went from oldest to youngest, sending each of them inside to wash their hands before  snuggling their baby cousin.  Capturing each of their moments with Zoe was precious.  They each just cherished her.  She is blessed to be so loved.


7.03.2012

Londyn Joy: She's 3, you see!

After finally bringing Zoe home from the hospital on Thursday, there was no way we could pull off Londyn's birthday party without bringing in the big guns... aka family.  My mom prepared the most adorable decorations, her and my niece Megan made a super cute and delish cake, my brother Kevin opened his awesome home and hosted the entire shindig and everyone chipped in to help set up and make Londyn feel like the center of universe.


Birthday Girl

Zoe partied pretty hard too

Londyn has SO many people that love her and that clearly know how obsessed she is with Hello Kitty

Cousins Emma & Kayla




Londyn requested that we have fireworks at her party, so Andrew surprised her and took her to pick out fireworks earlier that day.  Unfortunately, she was more a fan of the idea... rather than the actual fireworks.  

Yesterday was Lulu's actual birthday and it started out by Gma Milne taking us out to Shari's for breakfast.  Londyn ordered Mac n' Cheese and fruit.  This kid would eat Mac n' Cheese for every meal.

As you can see, Zoe ordered a tube of milk.  She's pretty predictable.

We then took Nana Brendi to the airport.  It was so sad to say goodbye but at least we got to spend 2 whole weeks with her!

Londyn is such a good big sister.  Yesterday she told me "I love my sissy."  

After the airport, we had to go to the hospital for Zoe's blood draw to check her heparin level.  We arrived over an hour early but figured we could kill time by playing in the children's garden, which is usually one of Londyn's favorite places there.  Too bad she was in a mood and was over it in about 10 minutes.

We then spent the rest of our waiting in the lobby.  Londyn and Andrew are just the cutest together.

After 5 pokes and 4 different people including an IV specialist, two hours had passed and we were all beyond beat.  Both girls passed out on the way home.

I was so bummed out that Londyn's birthday was spent at the hospital, but my sour attitude quickly turned when we gave her our birthday present.  Her very own dollhouse.  Can I just say, I LOVE CRAIGSLIST.  I still can't believe we got all of this for 50 bucks.  The house has so much potential and the extras are what make it a little girls dream.

She stayed up way too late last night and ALL day today playing with her dollhouse.

We then dropped Zoe off at my parents house and took Londyn out to Red Robin for a special birthday date. 

I love this little girl so much.  How can you not be happy when around her?

HAPPY BIRTHDAY to the sweetest, most hilarious and witty, cutie pie - honey bunch girl.