Zoe Grace: Small heart, BIG miracle

Over the last three days, we've gotten our Zoe back.  She has been so alert and playful.  Our night nurse for the first three days in the ICU set up a mobile and mirror on Zoe's crib.  She loves playing with it so much, that I think she has a little crush on the jelly fish.  She reaches for the fish, talks up a storm and sticks her cute little tongue out at them.  

Zoe is such a fighter.  I knew she was strong, but seeing her like this only 4 days after having a stroke... is truly a miracle.

  

Much needed naps after all the playing.

We are waiting to draw her blood at 1pm and if her Phenobarbital and Lovonox levels are right where they are supposed to be, we get to take her home today!  Praying for good news!

Zoe Grace: Exhale

Sunday is a day of rest and it was just that for Zoe.  As much as we wanted her to be taken off of the ventilator, she just wasn't quite ready.  Dr. Huffman (Neurologist) was watching Zoe's EEG on her computer from home and saw sub clinical seizure activity.  She ordered more Phenobarbital, which made her extremely drowsy.  The poor girl had been through so much since Thursday, that she was entitled to some much needed Zzzz's.  We went home pretty bummed that we didn't get to hold our Ziggy, but Andrew gave her a good talkin' to before we left and told her he WAS going to hold her the next day.

Andrew's talk proved effective because today was a very good day for Zoe.  We really needed a good day. Zoe was extubated at about noon and came out of it very well.  She took a deep breath and coughed several times, which is exactly what she is supposed to do.  Although, right when the Respiratory Therapist decided that she might need high flow oxygen and put the stickers on her cheeks, she decided she wasn't having any more tubes on her face... so she managed to stabilize her O2 saturations, along with her respiratory rate.

After getting some long overdue snuggles with our bundled babe, Zoe needed more blood drawn for a blood gas and to check her levels of Heparin.  The IV team tried to get blood but she just didn't have very many areas left to poke.  Dr. Banks (Intensivist) ended up drawing from her arterial vein, which he says is one of the most painful things he ever had done in med school.  To make matters worse, the sample the nurse hand-delivered to the lab started to clot before they could test it.  That's right, they had to draw from her arterial vein AGAIN!  But at least they got enough this time and her blood gas came back great, but her Heparin levels were low.  Our doctors may be changing the dosage on her anticoagulant medication if necessary.

Zoe has been successfully getting breast milk in her new G-Tube at a slow rate, which will continue to increase as long as she tolerates the feeds.  Also, all of her meds that were being given through the IV are now being given through her G-Tube.  At this point, she doesn't really need her IV anymore.

The plan is that as long as she remains seizure-free and stable tonight, she will move down to the pediatric floor tomorrow.  One floor closer to going home!  Our doctors want to make sure she is doing well for at least 48 hours and that the dosages on her new meds are just right before sending us on our way.

Today felt like a giant exhale, as if we have been holding our breath for the last 4 days.   As we established after Zoe's heart surgery... we are all on ZOE TIME, learning patience and embracing tender mercies.

Andrew was the first to hold Zoe since Friday.  He missed his little girl so much.

LOVE seeing those beautiful brown eyes open!

Cutie Patootie

Daddy & Nurse Erika gave Zoe a much needed sponge bath.  I love her... but she was stinky.

So in love...

Zoe Grace: Half a Heart, Full of love

I am sitting here in the Pediatric Intensive Care Unit at Randall Children's with Andrew and Zoe... waiting.  What was supposed to be a simple procedure and overnight hospital stay has turned in to so much more.  I don't even know where to begin... 

On Thursday, June 21st - Andrew and I woke up to our alarms at 5am.  We packed up Zoe and checked in  for her surgery at 6:15am.  The procedure started at 8:30am and she was finished by 9:15am.  We were amazed at how short it took to complete.  They took us back to be with her in the recovery room and she was wide awake, making cute faces and breathing all on her own.  

Zoe was so happy to see her Daddy and hear his voice.   Her eyes lit up when she saw his familiar face.

In Recovery

We were then taken up to room 624, where we settled in for what was supposed to be only one night.  Our nurse Amy and CNA Jane were super sweet and accommodating.  

Nana Armitage & Grandma Milne came up with Lulu to see Miss Zoe.  Andrew and I are so lucky to have mom's that love each other.  Those two are trouble together.  

Nana Brendi

Comfy Cozy

 PEG (Percutaneous Endoscopic Gastrostomy) Tube

Feedings through her new tube have been running without any problems

All day after her procedure, Zoe was constantly crying and fussy.  She seemed more uncomfortable than expected, especially because the nurses tried Tylenol, Morphine and Oxycodone.  At about 3:45pm, our nurse Amy took her temperature and she had a fever of 101.4.  This is when we realized that something wasn't right.  They ran a CBC, blood culture and urine culture to look for infection.  Zoe was then given Tylenol and Oxycodone every 4-6 hours and the highest her fever reached was 102.  

From about 6:45 to 7:15am on Friday morning, Zoe had three seizures. They gave her Ativan to quickly stop the seizures, which also made her very sleepy.   

The pediatric team talked with the Neurologist and decided that it would be very rare for her seizures to be related to the fever and they wanted to do an MRI, MRA, Spinal Tap and EEG.

At about noon, Zoe had another seizure in the middle of her EEG getting set up.  This time, the seizure lasted  6 minutes long.  

Taking Zoe down to MRI

We then met with Dr. Leon, the Anesthesiologist who would be doing the sedation for her MRI.  Following the MRI, the plan was to do the spinal tap while she was still sedated.

After only capturing the first 2 series of images, Zoe's O2 sats kept dropping and her heart was out of rhythm, also known as heart block.  They had to intubate her and stop the MRI.  She was then transported up to the PICU, where she had many small seizures all throughout the night.  

After arriving in the PICU

This morning, Zoe made it through the entire MRI and was able to have the spinal tap done as well.  The spinal tap fluid came back negative of any infection, but the MRI showed three noticeable spots.  Two larger spots on the right side of her brain and one smaller spot on the left side.

The larger picture on the left shows three spots on her brain which are shown in white.

Our team, consisting of an Intensivist, Neurologist, Hematologist, Infectious Disease Specialist and Cardiologist all met together and came to the conclusion that from the findings on her MRI, Zoe had a stroke very recently, which is the cause of her seizures.  The stroke was most likely the result of a blood clot, as she is considerably susceptible with her congenital heart disease.  They're plan is to monitor a 24-hour EEG tonight and hopefully be able to extubate her tomorrow morning.  They have also started her on anti-seizure medication called Phenobarbital and an anticoagulant to help reduce the chance of any further blood clotting.  

This was taken right before we left this evening.  Her head is wrapped to secure all of the electrodes on her scalp.

These last few days have been exhausting, emotionally and physically.  Being back in the PICU is almost more difficult than the first time we were there after her heart surgery.  Her condition is hardly comparable, but our love for her is so much more deep and life altering.  When she was in the PICU after her heart surgery, we had barely held her and everything was so new.  We loved her dearly then, but now... after caring for her 24/7, feeding her, seeing her smile, hearing her coos and cries... watching her grow, we are head over heels in love with this tiny little human.  Andrew and I have bonded with Zoe and the feeling is so much more different as we stand at her bedside, because we want so badly to see her eyes light up and her little tongue stick out.  We miss her grunts and the way she sucks on her fingers and pulls at her ears.  We miss our Zoe.

When Zoe had her first seizure, I was simply rocking her in my arms.  She was fussy and I was singing to her.  All of a sudden I noticed her left fingers and arm thrusting back and forth, along with the left side of her head.  In that moment, I was terrified.  That is something no mother ever wants to see their child have to go through.   That seizure was the first of many and I have felt more and more helpless with each one.  Knowing that my 2 month old daughter, who has undergone open heart surgery, infection, five times of general anesthesia, countless needle pokes, seizures and a stroke... I am beyond amazed at her strength.  Not only is her body tough, but so is her spirit.  My dad said something today that really changed my perspective.  He said that Zoe was sent from God to teach all of us.  I believe that is true and that I have already learned more about life and myself in these past two months than I have in all my 25 years.  Zoe is special that way.  She has taught me everything from faith and unconditional love to sacrifice and the gift of Christ's atonement.

I had a moment today of weakness.  I was feeling the why's and why me's... why us... why Zoe?  I realized that it is that very weakness that Zoe was brought here to strengthen.  I'm nowhere near perfect and none of us are, but when I look into those beautiful brown eyes and hold her warm little body close to mine, I know without a doubt that she is the closest to perfection I will ever know on this earth and in this life.

Bishop Jaussi, Andrew and my Dad gave me a blessing last night.  Two things that I distinctly remember Bishop Jaussi mentioning in the blessing were that I would have strength and that Zoe was surrounded by angels watching over her.  Those were things I really needed to hear because at times, I question my ability to be everything that Zoe needs.  The reality is that I can't do it alone.  I'm not meant to do it alone.  My Heavenly Father knows this.  He has surrounded Zoe with countless angels... her sister Londyn, extended family members, friends, church members, doctors, nurses and more along the way on this journey of hers.

Yesterday, as Andrew was referring to Zoe, he said "Half a heart, full of love."  I cannot think of a more perfect description for little Miss Zoe.  She may have a heart defect, but that doesn't stop her from being one of the greatest blessings in our lives.

Thank you for all of your comments, emails and especially all of the prayers.  We have felt your love and support..  

Londyn Joy: BIG Ham

Londyn had her very first dance recital this past Saturday and she pretty much stole the show.  Of course I am her mom, so I can say that.  The day before, Andrew was a super-dad and took her to dress rehearsal.  She was a pro on stage, so we weren't too worried about her being shy.

Every ounce of why I love this little girl was quite obvious in her performance!  Her BIG personality "shined like the top of the Chrysler building!"

It's funny... I started dancing almost 24 years ago, at exactly her age.  It's just crazy to me that now I'm the dance mom and loving every minute of it!

In the dressing room, getting ready for the show to begin!

Londyn always refers to her cousins as "my girls" and her girls were all there to support her with flowers in hand.  They were so proud and excited to see the little star, you would have thought it was her Broadway debut!

Gma & Gpa Milne with all the girls

My parents took us all out to Red Robin to celebrate.  Apparently we weren't the only ones with the same idea because the place was packed!  

Even with all the chaos, Zoe was an angel throughout the entire evening!  

Zoe Grace: Tender Mercies

What an eventful weekend we had!  I am just now getting up the energy to blog about every moment.

Zoe and I headed to Northwest Gastroenterology for Round 2 on Friday.  The appointment started off on a positive note as Zoe's weight went from 8 lbs. 9.5 oz. on Thursday to 8 lbs. 11.5 oz. on Friday.  A 2 oz. increase in 24 hours is not too shabby!  We are seeing some drastic results in weight gain from the continuous feeding and I couldn't be happier.  

I knew I liked Dr. Fridge right off the bat because she started out by telling me that her daughter's name is Zoe.  Love it!  It was also refreshing and comforting to have a female doctor.  All of our doctors so far have been men and we have felt confident with each and every one of them, but it is nice to have your baby in the care of another woman and mother herself.  Dr. Fridge was completely on board with the Gastrostomy Tube and used a baby doll to show me exactly what to expect.  She was very thorough and left me with no questions at all.  Zoe's endoscopic procedure will be on Thursday at Randall Children's.  We will check in at 6:30AM and she will go in for surgery at 8:30AM. It is a pretty simple procedure.  Dr. Fridge will be placing a PEG Tube (Percutaneous Endoscopic Gastrostomy), where an endoscope is lead from the mouth down to the stomach to find the correct position.  Then a small incision is made through the abdomen, where the PEG Tube is then fed through from the inside out.  The actual procedure only takes about 20-30 minutes but because Zoe requires Cardiac Anesthesia, it will be about an hour long.  

Although I know it is a standard procedure, I am getting nervous to take my baby back to the hospital. As much as I love the care we received at Randall, walking into that building... it's the smell, the food, the hand sanitizer, the familiar faces... everything there brings back all of the fears that were felt in the first 30 days of Zoe's life.  I know those feelings will never go away and will be heightened with every surgery Zoe undergoes... but knowing doesn't make it any easier to accept.  

I was told that Zoe will be monitored for 1-2 nights at the hospital, to make sure that the new tube is working properly.  Dr. Bridge said that it will probably only be one night since we are already used to her being on the enteral feeding pump.  I'm crossing my fingers, because sleep in the hospital is pretty much nonexistent.

Overall, I am praying that this next step in Zoe's journey will help her weight to progress consistently.  She is constantly making an effort to rip the tape off of her cheek and pull her tube out.  At least we know she's a feisty one and is strong enough to do so!  She has already pulled her tube out twice in the  last week when I thought she was asleep in her bassinet.  Since the pump was running, milk was all over her.  She could have drowned!  

In less than 36 hours, I will get to see my baby's beautiful face completely tube-free.

Zoe's such a gangsta.  Word.

"Joey" the feeding pump

Pretty Girl

It wasn't me!

Andrew's Facebook status today...

"I just got Zoe to smile at me. I think I just fell in love with her again."

Tender mercies.

A Mother's Instinct

Yesterday was one of those days where I was in over my head... I felt like I was under water and struggling to come up for air!  I would rather not go over it but I need to for documentation... so here it goes.

The night before was restless as Zoe was up off and on all all night.  One of the problems we are facing is that she is most comfortable sleeping on her belly.  Londyn was the same way, but I wasn't as concerned.  I know SIDS is very real, but with Londyn I was much more lax on everything.  Now with Zoe, every ounce of her care is hypersensitive and the last thing I want to do is put her at risk for any unnecessary complications.  Our compromise has been putting on to sleep on her side.  She doesn't like it as much as her belly, but much better than her back.  Anyway, I finally got her comfy and sleeping at 5:45am.  Then my next shift started at 5:55am when Lulu decided it was time to wake up.  Usually when she wakes up early, she climbs into bed with us and goes back to sleep for a couple extra hours.  Keyword: Usually.  This particular morning was not the usual and she wanted to start her day. I  pacified her with a sippy cup of milk and Nick Jr. but I was so overly exhausted that I couldn't even sleep... I hate that feeling!

By 10am, I still hadn't heard from Dr. King or one of our cardiology case managers.  This is when I opened up a can of worms.  I called and left a message for Tami (case manager) about the situation with Dr. Riley last week.  She called back and explained that Dr. King was very upset with Dr. Riley's decision to forego a gastrostomy tube and try an nasojejunal tube first.  He thought that Dr. Riley was on board when they had spoke about Zoe's case before our appointment, so it was frustrating for all parties involved when he rerouted the plan.  Dr. King recommended a second opinion with one of the other doctors in the Peds GI group.  Apparently, this is not the first time that Dr. King has had issues with Dr. Riley and will not be referring patients in the future.  After discussing the situation with Tami, we came to a consensus that Dr. Riley was just not a good fit for us.  Tami then got in touch with the department head, Dr. Fridge to find out what their policy is on second opinions and switching providers within the group.  Dr. Fridge understood the situation and offered to see Zoe this week!  Hallelujah!  

After all that, I get a call from my pediatrician, Dr. Rollin.  I was surprised that in the midst of this unnecessary drama, she called to get in on the situation.  I love our pediatrician, but the last thing I needed was to add another doctor to the complicated mix.  She said she had been given the rundown on our GI appointment and agreed with Dr. Riley on trying the NJ tube option.  I was exhausted, frustrated from being on the phone ALL day and after finally getting everything figured out... I was just done.  I told her that ultimately my gut was telling me that neither the NJ tube, nor Dr. Riley were right for us.  She said that it was up to me but she would recommend really considering his plan.

After all of this, I still felt guilty going behind Dr. Riley's back without at least letting him know my concerns and frustrations.  How can I blame him if I don't tell him exactly how I feel?  Speak of the devil... he called me directly.  He left a message saying that he had spoken with Dr. King that morning and heard that I might have some questions. (I know for a fact that Dr. King wasn't happy and told him straight up that I was very upset after our appointment... but maybe that translates to "questions" to him?)  I called him back and told him that Zoe was doing really well with the continuous feeding and occasionally spits up, but has not vomited since we made the switch.  He tried to back pedal and say, "why didn't anyone tell me that?  If I had known she was doing so well, I would have said of course we will do a g-tube."  This was contradictory to his original plan to begin the continuous feeding, place the NJ tube and then see how she does.  Anyway... this post is getting way too negative for my liking, so let's just get it over with.  By this point in the conversation, he had done a complete 180 and was now Team G-Tube.  With that said, I still did not have a good feeling about him.  I felt that he had been caught in a poor decision and if continuing in his care, we may face similar issues in the future.  I asked him if now that the G-tube was his recommendation, if it was possible to have another doctor within the group do the procedure.  His response was as I expected... that if we switch doctors, I would need to start from scratch with a consult and that their group does not like to do that as he know's us best.  I told him that I wanted to talk to Dr. King before making any other decisions.  Dr. King is our guy.  He has been with us since I was 20 weeks pregnant and without him, who know's how Zoe would be right now.  We trust him with our child's life.  You really can't trust a person more than that.  

By the end of that conversation, my mind was made up.  Even though we have to start from scratch with Dr. Fridge, it is what my motherly instinct is telling me to do.  I have heard fabulous things about her from other heart mom's and the approval of other parents in my place is huge.  We will see her on Friday at 1pm.  Hopefully, what was initially supposed to be a simple situation will go as planned and we will have a Gastrostomy tube placed in the very near future.  

On a super fabulous note, last night Zoe slept from 1:30am to 9am and she would have slept longer but I wanted to get something done this morning.  I am trying to keep her awake more often during the day by not letting her sleep more than 3 hours at a time, spending lots of time "playing" during the day and only swaddling her when she sleeps at night.  Praying for another good night tonight!

Today, my sis picked Lulu up at 9:30am to play with her cousins and give me a break.  Since I had gotten a pretty decent night of sleep, I wanted to get out of the house.  What to do?  Of course.  Target run.  I took Zoe (feeding pump in hand) and thoroughly enjoyed two hours of uninterrupted browsing without whining, bribing or chasing of a 2 year old.  When I was a teenager, my zen place was Nordstroms... but that was when life was all about me.  As an adult, Target now gives me that same therapeutic escape.  I don't know if it's the free refills on DC at the cafe... the 50-70% clearance racks that scream my name or the fact that they now carry groceries, but it's my go-to place to just get away.  Really... the only thing that would make it a little bit sweeter is free childcare.  Can I get an AMEN?

Londyn Joy: 2 years 11 months

I can't believe Londyn will be turning 3 next month!  Where has the time gone?  She has transitioned so well with Zoe's arrival.  I'm the luckiest mom to have Londyn in my life.  She is the craziest, most hilarious, sassy diva of a little girl.  She is constantly talking up a storm, singing songs and playing pretend with her Barbie's and baby dolls.

Right now, her favorite songs are: 

"The Family Song" - Families Can Be Together Forever

"The Temple Song" - I Love To See The Temple

"Child of God" - I Am a Child of God

These three are her requests every night when tucking her in to bed.

Lulu's dance recital is next week and her routine is so dang cute... mostly because she's in it.  I just can't get enough of watching her dance!  She loves to dance.  I wonder where she gets that from?  Picture day was yesterday and Lulu loved her costume.  Her class is dancing to a song from the Lion King and Londyn has really perfected her lion roar.  I just love this face.

She picked this outfit herself to go out with Grandma Milne.  Got pink?

Londyn is such a smarty pants!  I know everyone says their kids are the smartest kids on earth... but seriously, it's true!  She is so good at memorizing.  After teaching things 1 or 2 times, it's sealed in that little vault of hers and she remembers most everything.  It's too bad that vault doesn't remember that pacifiers are only for bedtime... and whining is not cool!  Baby steps...

When's your birthday? "July second birthday" - not sure why she adds birthday at the end... but she kind of sounds like a robot haha

What's dad's name? "Andrew Thomas Armitage"

What's Zoe's name? "Zoe Grace Armitage"

What's mom's name? "Kacie Linh Armitage"

My favorite is when strangers ask her what her name is and instead of saying Londyn, she says "Londyn Joy Armitage"

How old are you? 2... I be 3 soon.

She also counts up to 12 and is working on her numbers all the way to 20.

Lulu loves recognizing letters.  Whenever she see's an "L" anywhere out in public, on TV or in a book... she says "That's my L!"

We've been working on writing her name and she has her L, O & N down.

Londyn can't stop talking about school.  She is SO excited to start preschool at Aunt Becca's house.  My sis-in-law Rebecca has started her own in-home preschool, called Wild Acres Preschool.  They live out in the country and have tons of ground for the kids to explore, play and learn.  Londyn will start school in September and attend two days a week.  She know's all the kids that will be going to her school and she could not be more ready to learn!

Madness, I tell you... Madness.

Yesterday was a day I would not like to repeat.  I could just scream... oh wait, I already did plenty of that.

It started off with the chaos of picture day at dance with Lulu.  Let's just say, trying to get 6 little 3-4 year olds to be super adorable on demand... in itchy costumes they had never even tried on until that day because the shipment barely arrived on time... was filled with bribes of popsicles and who know's what else I threw out there.

After pictures, I was able to sneak in a shower before heading to Zoe's appointment with the Pediatric Gastroenterologist.  Can I just say... I love Emanuel, I really do.  But the commute is getting old!  I don't think I've spent more time in Portland EVER... and I have lived almost my entire life.  I'm pretty sure Portland has more to offer than a hospital.  Maybe someday we'll find out.

After Zoe's appointment, I was really upset.  Every unpleasant emotion in the book.  Since I knew Dr. King had talked personally with Dr. Riley (GI doctor), I thought everyone was on the same page. Basically, our need for seeing him is because Zoe's oral feeding is not improving, her weight is not increasing at the rate we would like and she is struggling to keep her feeds down.  As many HLHS babies struggle with feeding, it is not uncommon for a gastrostomy gube to be placed due to the long term complications with nutrition.  Blah blah blah... we're all on the same page, right?  WRONG.  When I first started talking with Dr. Riley, he asked what we were there for and the problems we were facing.  I told him everything and that Dr. King had been prepping us for a G-tube since we were discharged from the hospital.  The entire time I was talking, he repeatedly made it very obvious that placing a G-tube was not his intention at all.  I was so confused because I thought that was why I was there and why Dr. King referred us to him in the first place.  Dr. Riley explained that the problem is keeping food down and that a gastrostomy tube would have the same result as her current nasal gastric tube.  While I realize this, it is the long term issue that I am more concerned about.  Zoe pulls her NG tube out from her nose at least once a week... the poor thing has not been without something in her nose and on her face since the day she was born.  A part of me wonders if she is so opposed to her NG tube feedings because she hates the stinkin' tube in her nose!  I would protest if I were her.

As for "other options," Dr. Riley's recommendation was to start her on a continuous feeding schedule.  Continuous feeding would be done using an enteral pump which she would be hooked up to for 10 hours at a time from 9am-7pm and then 9pm-7am.  Her current diet is 70 mils every 3 hours, which works out to be 560 mils in 24 hours.  With the continuous feeding, she would get 280 mils with each 10 hour feed.  That works out to be 28 mils every hour.  The continuous feeding is just about the only recommendation that Dr. Riley made that I really felt good about.  I think that Zoe struggles with the large amount of volume being dumped in her tiny belly every 3 hours and she might be more comfortable with a slow and steady continuous feed.  We will see how that goes as a nurse will deliver the enteral pump tomorrow and teach me how to use it.  We will know very quickly how she feels about it.  The only downfall is that she will be hooked up to a pump 20 hours a day!  My hope is that if this works, she will plump up... and gain more strength and energy to work on her oral feeding skills.

The next recommendation was a nasojejunal tube.  The NJ tube is fed through the nose and down to the small bowel.  The procedure is done by a radiologist, using a fluroscope and contrast.  The difference between the NJ tube is that it bypasses the stomach completely, taking the food from her nose to her small bowel... whereas the NG tube takes the food from her nose to her stomach.  His hope is that this would allow food to go down and stay down.  The idea sounds fabulous but not ideal for a long term situation.  If she pulls this tube out, she would need to have a procedure scheduled every time.  I wouldn't be able to just put it down myself as I have been doing.  Since I trust Dr. King and his referral to see Dr. Riley, I agreed to go along with his plan even though I was hesitant.  We scheduled the NJ tube placement for Monday.

After I got home, I was beside myself and after some convincing from my mom... I called our case manager, Paula.  I gave her a not-so-brief rundown of the appointment and she was shocked.  She said Dr. King would definitely want to know about all of this before placing the nasojejunal tube on Monday.  She was also concerned that Dr. Riley decided that Zoe wouldn't need anesthesia for the procedure, which concerns me too!  I highly doubt that feeding a tube through your nose, all the way down to your bowel is a walk in the park... especially for a 2 month old baby.  Paula was confused as to Dr. Riley's understanding of how long term this issue is going to be.  She said that she wouldn't be surprised if Dr. King referred me to a completely different doctor within the pediatric gastroenterology group to get us that gastrostomy tube.

I hate to ruffle feathers between doctors, but I really and truly feel that something just isn't right about this whole situation.  All I want is for my baby to be able to eat, gain weight and have the Glenn surgery.

Dr. King is out until Sunday, so he will hear about this from our case managers and we will know more on Monday.  As for now, we will be trying the continuous pump feeding over the weekend.  The NJ tube placement has been cancelled until we get the okay from Dr. King.

Breathe.  One day at a time.... breathe.

Zoe Grace: 6/4 Cardiology Appointment

What a morning we had...

 

Londyn woke up at 5:45am.  I brought her downstairs and luckily she fell back asleep with me on the couch.  Like a zombie, I turned the alarm off 75 minutes later to give Zoe her 7am feed.  Finished her feed around 7:40am, changed her diaper... then fell back asleep with Lulu.  I was in such a daze that I totally forgot that I was supposed to get up at 8am to get ready for the day. We woke up briefly when Andrew came downstairs around that time, but then fell back asleep.  I finally snapped out of it and looked at the clock... it was 9AM!  I was supposed to be on the road to Zoe's cardiology appointment at 9:15am.  My mom arrived at 9:05am to pick Lulu up and of course, we were both in our jammies, I was rushing to give Zoe all 7 of her morning meds, get Londyn dressed, myself somewhat presentable to society and of course... Zoe in fresh clothes, diaper changed and all packed up.  This was not the best way to start off my Monday.  Shockingly, I got myself together... threw a DC and a protein bar in the diaper bag and was on the road by 9:17am.  How?  I have no clue!  At about 9:30am, I looked at my gas gauge and got an unfriendly reminder that I was on EMPTY.  Seriously?!  So I pulled over to put 15 bucks in the tank so I could quickly be on my way.  I pulled up to the hospital and skipped the parking search by using their super convenient valet, hopped on the elevator and checked in 5 minutes early.  Although I can't guarantee I didn't speed like a mad woman, I made it!

Zoe cried throughout the entire 30 minutes of her echo, but it was worth it because everything still looks very good!  The blood clot that was found two weeks ago is getting smaller with the increased dosage of Aspirin.  Hallelujah!  Unfortunately, her Common AV Valve is leaking more due to the Atrial Septal Defect.  Dr. King has decided to increase the dosage of Captopril from 1.5 mils to 2 mils, three times daily.  Hopefully that will help!  Along with altering these two medications, Zoe no longer needs to take Digoxin or Spironolactone.  That's 2 out of 6 of her prescription meds down!

Following the echocardiogram, we put Zoe on the scale and we made it over the 8 pound hump!  She weighs 8 lbs. 1 oz.  I asked Dr. King where he would like her weight to be for the second surgery and he said 11 pounds.  Holy cow!  At the rate she is gaining right now, that seems like quite a feat! She's a fighter, so I know she can do it!

I've always known how blessed we are to have Dr. King as our cardiologist, but am just now starting to find out how well known he is in the entire medical community.  Whenever we need anything or he makes a call, it's taken care of.  You could say, he has some pull around these parts.  When I told him our appointment with the pediatric gastroenterology group wasn't scheduled until July 13th, he said he would talk to one of their Docs about Zoe and see if they could get us in any sooner.  It wasn't more than an hour after we got home from our appointment that I got a call from the gastroenterology office, letting me know that Dr. Riley is willing to see Zoe ANY afternoon this week.  Seriously?  This just puts us one step closer to G-tube placement, which I am praying will help Zoe to gain more weight!

Appointments, appointments... appointments.  Today was the Gardiologist, tomorrow is my OB, Wednesday is the Gastroenterologist and Thursday is with our WIC nurse.  Sometime in there I need to take Zoe into the pediatrician's office for a weight and length check.  

"I think I can," puffed the little locomotive, and put itself in front of the great heavy train. As it went on the little engine kept bravely puffing faster and faster, "I think I can, I think I can, I think I can."  

- The Little Engine That Could