Zoe Grace: 7 weeks

I wish I had more time to update our blog because SO much happens on a day to day basis and when I do finally sit down to document everything, happenings slip through the cracks.  Is it possible that some things are more important than blogging?  Gasp!

Our Nurse Case Managers referred us to a Community Health Nurse who makes home visits on a regular basis.  She does weight and length checks and points us in the direction of many resources.  Last Friday, May 25th was our first visit with Amy Christensen, our assigned nurse.  Amy is such a sweetheart and made me feel so at ease.  She had all of Zoe's medical records but made the effort to get to know me and more about our family.  After measuring Zoe, she weighed in at 7 lbs. 14 oz. and 20 3/4 inches long.  That is 6 ounces gained and 1 3/4 inches grown since birth!  Amy also signed Zoe and I up for WIC and because of the medical necessity, we qualify for a brand new Medela breast pump.  I have been so concerned about how much we have been putting out in rental fees for the pump from the hospital, so this came as a very pleasant surprise.  What a blessing!

Amy also came by for another visit this last Tuesday, May 29th for another weight check.  Zoe weighed in at 7 lbs. 14.5 oz.  Unfortunately, those numbers aren't ideal... as she only gained half an ounce in 4 days.  Average newborns gain about 1/2 ounce daily... which leads me to my next topic.  

Zoe is eating 65-70 mils of fortified breast milk every three hours.  This is a 24 calorie diet.  Unfortunately, a large portion of each feed is not staying down.  She takes about 10 mils by bottle and then the minute we start putting the remaining 60 mils down her tube, she fusses and cries.  I can tell she is uncomfortable because she squirms like it's painful.  Shortly after her feed, she vomits... often out her nose and even back up from her stomach through her tube.  I have found that she doesn't fuss as much if I do the gavage feeding with her laying upright on my chest, but is still followed by vomiting.  

After speaking with our case manager Paula and our pediatrician, Dr. Rollin, Zoe might have reflux.  Dr. Rollin put Zoe on Prilosec and hopefully we will see results from that.  Since her 2nd surgery is most contingent upon weight gain, I really hope that we can get on top of this issue and it doesn't become a setback.  Dr. Rollin also referred us to a Gastroenterologist, but the soonest appointment I was able to get is July 13th.  We have an appointment with our cardiologist on Monday, and hopefully this new discovery of reflux will get us that much closer to her g-tube placement.  I am optimistic that the g-tube feedings will be more comfortable for Zoe.  If anyone can get us into a GI Doc sooner than July, it will be Dr. King!

Memorial Day weekend came as a huge relief having Andrew home.  Not only did I get to sleep in my bed for the first time all of Friday night, I got lots of naps and Londyn got tons of attention from Daddy.  

Sunday was special because Andrew stayed home with baby and I got to take Lulu to church.  Of course we were 45 minutes late, but hey- we made it!  It was a strange feeling to be at church for the first time in 6 1/2 weeks.  I was more anxious than I have been in a long time.  I have always craved social interaction, but since I have been hiding out for almost two months... seeing and talking to so many people was overwhelming.  It's hard because I love our ward family so much and these are the people that have been bringing us meals for weeks, calling, emailing and helping in every way possible.  I thought I would feel a sense of "home" and comfort by being around loved ones, but I think it will just take some time.  My "normal" isn't normal anymore, which is hard to let go.  One day at a time!

Confession... I hid out in Londyn's nursery class with my mom for the second hour.  Londyn was SO happy to see all of her friends!  Here she is playing Dora and Diego with her friend Kyler.

After Lulu and I took a long Sunday nap together, we all went over to my parents house for the very first time.  They invited us over for a delish dinner of salmon and chicken skewers.  Before Zoe, spending time at my parents house was a regular event... so having her with us felt so refreshing and hopeful for more outings as our new family of four.

Memorial Day evening, we went out to dinner with my brother Kev and my sis-in-law Bec to Olive Garden.  Londyn got to stay at their house to play with her cousins and Zoe tagged along on our double date.  This was another first for Zoe!  Her feeding tube was a perk because I could eat and feed her at the same time by just putting her in the car seat and holding the tube.  After lots of laughs and filling our bellies, we went back to their house.  We ended up hanging out for 2 hours with the fam.  Zoe is quite the party animal!

Zoe's medications have become a lot easier to get a handle on except for the fact that they are all compounded into liquid form... which means we have to fill them at a compounding pharmacy.  I didn't know this, but compounding pharmacies are far and few!  We can fill them at the hospital, since we are there so often... but it isn't convenient when you are in a bind and then have to make an extra trip up to Emanuel JUST to go to the pharmacy.  After making a bazillion phone calls and spending way too long listening to hold music while waiting to talk to my insurance company, I found a compounding pharmacy that does free mail delivery.  Mail delivery = one less trip out... music to my ears.

Today I took Zoe to the Wound Clinic for her weekly appointment.  Her wound is completely closed and looking FAB-U-LOUS!  The best news ever is that they don't need to see us back! 

Here is Zoe after I fed her in the car, she puked and I changed her into a fresh clean outfit.  Too dang cute!

I was up holding Zoe a few nights ago and she was fed, changed and sleeping soundly.  I should have been taking advantage of the short window of time I had to sleep... but I took a few moments to just look at the baby in my arms.  I have loved her so much since the day she was born, but it was then that I knew I was head over heels in love with my tiny little Zoe Grace.  The last 7 weeks have been emotional, exhausting and downright scary.  Now that we are finally together and home, I have finally been given a chance to truly bond with her.  

One of the reasons that I loved the name Zoe, is for it's meaning... "Life."  Grace was so fitting for her middle name because without the grace of God, we would not be able to witness such a precious miracle.

My days are filled with so many challenges and blessings all in one... but it is the sweet moments with my girls that make it all worth it.

Lulu & Ziggy

Zoe is such a good baby.  Aside from her schedule, she doesn't need much but lovin'.  She loves being held and snuggled, but doesn't mind resting in the Boppy or her swing.  As a matter of fact, she isn't a huge fan of the bassinet and sleeps on the Boppy every night.  

Just like Londyn, we have come up with a whole slew of nicknames for Zoe.  So far... she goes by, Zozo, Zuzu, Ziggy and Zo-Glow (my dad's name for her).  I love our little Ziggy!

I love our swing because when the mobile turns, you can make the stars light up and I love watching Zoe so alert and entertained.

Today I gave both girls baths.  Londyn was long overdue for a good scrubbing and in all of her 43 days since birth, Zoe had yet to take a real bath.  After our appointment yesterday at the Wound Clinic, Zoe got the okay to take a real bath.  Her incision is completely closed now!  I thought she would be startled by the bath, but she loved it!  A girl after my own heart.  She kicked and wiggled all over the place.

Lulu is still taking antibiotics for her UTI and now struggling from a nasty cold.  She has a croupy cough  , runny nose and bad attitude.  Whenever I am doing something for Zoe, Londyn "needs" me to hold her right then and there.  I feel bad because when she is sick or not feeling well, she is used to my undivided attention and snuggles... which is not the case now.  We are slowly figuring it all out.

Even though she's been a grouch lately, Londyn still keeps me laughing.  When she woke up this morning, I called her my special girl.  She quickly corrected me and said, "I not a girl, I a WOMAN!"

Always cracking me up.

I look forward to 12pm every day, because my saint of a mom comes over to watch Zoe, while Londyn and I take a nap together.  Londyn LOVES that she gets to sleep in my "BIG BED."  I love getting the one on one time with her and the rest is a lifesaver.  We sleep from about 1-4pm everyday.  It's A-MAZING.  My mom is a pro at the gavage feeding, so I don't even have to worry about waking up for Zoe's 3pm feeding.

Andrew doesn't have class on Wednesday evenings so I made my first meal last night since Zoe was born.  I have made freezer meals and picked up fast food... but spaghetti, french bread and a green salad was a huge accomplishment.  I was pretty proud of myself for starting a finishing a NORMAL task.  It was a quick glimpse of what I'm capable of doing with two kids.  It sounds silly, but cooking dinner has been just one of many overwhelming items on my list of things to do... such as, showering before 4pm, exercise (what's that?), eating healthy, sleeping instead of doing housework when I have the free time, doing laundry (makes me cringe just thinking about it) and giving Londyn more attention.  I'm guessing this is what Mommy's Guilt feels like.  Does any of it really matter... when I know without a doubt that my girls love me and that they know I love them?  As long as they know I love them, I'm doing something right.

Mama's Day 2012

It was truly a miracle to spend Mother's Day with both girls and my husband in our own home.  Overly exhausted, the Mr. sent me to bed almost the entire day.  Sleep was the BEST gift ever.  

Lulu picked out a Minnie Mouse card for me and my resourceful husband gave me yellow roses, a 20 count case of DC and some other goodies.  The most creative part of his gift giving wasn't the actual gifts but the wrapping.  My resourceful husband didn't need a gift bag or wrapping paper... he just went out into the garage for literally 5 minutes and came back with this handcrafted wood box, equipped with tool for opening.  That's my man.

To avoid exposing Zoe to germs, we spend ALL of our time at home... except for appointments.  This is tough for me because I like to be out and about.  Mother's Day weekend was filled with heat and sunshine, so we soaked up what we could with our first walk together as a family.  

While Andrew stayed home with Zoe, Lulu and I went to my Mom and Dad's for family dinner.  Being social is my thing, so it was super fun to be with the whole gang again!  Londyn loved playing with her cousins and my favorite part was hanging out with my nieces.  Their parents might disagree, but being their aunt during these teenage years is my favorite.  It was so refreshing to laugh and smile with them! 

Bringing Home Baby Zoe

We have had our beautiful baby girl home for 11 days now!  

 {Take Home Day}

It has been quite the adjustment as we are used to having nurses around to manage all of her care.  Now we are flying solo and it is a lot of sweat, with little sleep... but it's all worth it, just to be home together.

Here is Zoe's daily routine, without the unpredictable... such as, diaper changes and naps.

12AM: Feeding

3AM: Feeding

6AM: Feeding

9AM: Check placement of feeding tube in stomach, 7 medications (Lasix, Keflex, Spironolactone, Captopril, Digoxin, Aspirin and Tylenol) through NG tube, 70 mils of fortified mother's milk in bottle and then through NG tube, Wound dressing change

12PM: Feeding

3PM: Keflex, Captopril, Tylenol, Feeding

6PM: Feeding

9PM: Lasix, Keflex, Spironolactone, Captopril, Digoxin, Tylenol, Feeding, Wound dressing change

{First time in the bassinet}

This schedule has been really tough to get used to... for more reasons than one.  Since she is struggling with weight gain, it is really important to stick to feedings every 3 hours.  This is most difficult when both Zoe and I are snoozing through the night and the alarm goes off for another feed.  As important as I know it is to stick to the schedule, it just seems sick and wrong to wake a sleeping baby!  The meds were overwhelming for the first few days, but now it's a breeze... mostly because they just go down her NG tube.  Dressing changes are more exciting because her incision is finally showing significant progress and closing up!

{First time in the swing}

Another adjustment is all of Zoe's appointments.  Last week, she had four appointments - 3 in Portland and only 1 here in Sherwood.  With all the driving and coordinating care for Londyn, I asked myself a few times... Why did we leave the hospital again?

I wish I could go back in time and enjoy the simplicity of Londyn's newborn days.  What was I complaining about?  The grass is always greener!

Londyn is slowly adjusting to her new baby sister.  I think she thought that Zoe lived at the hospital.  She was content with the idea of being able to visit her and then be able to leave.  Now that Zoe has entered Lulu's territory, she has mixed feelings.  Within the first 48 hours of being home with Zoe, Londyn said "Baby Zoe needs to get out NOW!" She got past that initial attitude pretty quickly because she loves her sister.  She really has become such a huge help to me!  She throws Zoe's dirty diapers away, picks out her outfits, gets diapers and wipes when I need them and gets the pacifier when Zoe's crying.  At first, Londyn thought Zoe was going to be able to play with her... "Zoe play baby dolls with me?"  But, now whenever Londyn is doing something, she says "Baby Zoe can do this when she get bigger."

{This is us most days}

When Zoe cries, Londyn's usual response is "Baby Zoe want my dad." 

Here are a few other random things that she has come out with...

*My MIL will be flying out soon and Londyn said, "Nana Brendi come to my house and help clean." 

(I didn't think the house was in that bad of shape!)

*"When I get bigger, I be a mom and my boobies get bigger."  Seriously?!

*I had Zoe in the bassinet in my room and Londyn was downstairs watching a show.  I was in the bathroom and I heard tiny steps coming up the stairs.  When I hollered out, "Londyn... what are you doing?"  She said, "It's okay Mom - I looking at my sister!  I can't want to touch her, I just looking!"

*My favorite is when Londyn talks to Zoe on her own.  "Hi sweet girl" "Awww, you so tiny" "I love your hands baby Zoe" "You my favorite girl"

This last week was a doozy as soon as we received the news that Andrew's grandfather "Pamp" passed away.  We haven't seen his grandparents since we got married almost 4 years ago, so it was a blessing for Andrew to fly out to Massachusetts to celebrate the life of Robert Stevens along with his family.  His parents and 4 out of 6 siblings- Steph, Chris, Tanya and Jon were all able to attend.  It was really special for them to be together again, visit their old house and spent time with Gram and other relatives on the East Coast. 

Of course I wanted Andrew to go, but I was nervous to have him gone for 5 days.  It started off by taking Zoe to her appointment with our Cardiologist.  The good news was that he decided that she only needs to have her O2 on during that night when she is in a deeper sleep.  Wahoo!  The bad news is that the echo showed a blood clot at the end of where the Picc Line was placed.  It is not uncommon for heart babies to be prone to clotting and that is one of the reasons as to why she will take aspirin daily for the rest of her life, but it is not the best news because the clot can break up and travel either to her lungs or head.  Both places are not ideal.  Ideally, the clot will slowly get smaller and smaller and just go away on it's own.  Dr. King upped her baby aspirin dosage from 1/4 tablet to 1/2 tablet.  If when we return in two weeks, it has not changed... we will have to do Heparin Therapy, which means we will need to give her two shots daily of Heparin with the hopes that it will make the clot go away.

Because Zoe's oral feeding has not improved significantly, she will have a Gastrostomy Tube placed in the next few weeks.  This will be a feeding tube in her belly, which will make it much more comfortable for her and convenient for us to feed her.  She will need to be sedated for the procedure and have a 1-2 day hospital stay.  I am most excited about the pump that we will be getting at that point.  The pump will allow us to do a continuous drip feed throughout the night, reducing the up-all-night, frequent feeds on my part.

After we got home from the Cardiologist, I was so excited to take out her oxygen canula right away.  There was no change in her breathing or coloring throughout the rest of the day.  When it came nighttime, I put the canula back in and she cried and cried for an hour straight.  She was clearly uncomfortable.  Once I took it out, she was as happy as can be.  I used my mom instinct and made the call to just leave her be without the oxygen.  She did well all night and hasn't had it back in since.  I made sure to double check with our case manager today and she said she would get a pulse oximeter out to us, so we can at least do random sat checks throughout the night to make sure she doesn't drop too low.  

All day Friday, Londyn missed her daddy and kept asking when he was coming home.  

Saturday was interesting.  Londyn had a fever again... dejavu from last weekend.  At this point, I was pretty sure she had a UTI.  I kept her temp down with Tylenol and lots of fluids.  She was bouncing around and had no symptoms.  At about 6pm, she started to say that it hurt when she went potty.  I then knew I needed to take her in... but the Urgent Care closed at 7pm.  My mom was coming over to watch Zoe, so I could get a break and go to the high school Powderpuff game, where my niece Mikayla was playing as the Freshman Quarterback.  I was so bummed when I knew I wasn't going to be able to swing it.  After not showering for a few days... I at least needed to wash my hair.  I then rushed out the door with a mop of wet hair on my head, sweats on and a swipe of lip gloss.  The nurse at the Urgent Care taped a plastic bag to Londyn's business and then we waited... waited... and waited, hoping she would pee.  She didn't.  I think they all wanted to go home, so they gave us the prescription for antibiotics even without a urine sample to confirm a UTI.  Of course... ALL of the pharmacies were closed by 6PM (SERIOUSLY?!) so I drove to the nearest 24 hour pharmacy, which was about 20 minutes away.  Phew! So... it seems that I only get out of the house to see doctors... I guess it's better than nothing!

On top of the UTI, Lulu now has a fierce cold.

The last 6 weeks have been wild, but it is so worth it when I look at our sweet baby Zoe... sleeping peacefully.  Breathing.  I have always taken my healthy, breathing child for granted... and now that I have one that fights every day to achieve that very status... I am forever grateful for the tender mercies that lead us in that direction.  

{Sponge Bath Time}

Post Surgery: Day 29 - Good News & Bad News

Good News.
Over the last few days, Zoe has been tolerating the IV antibiotics really well and is now switching over to oral antibiotics.  Her wound is slowly improving and all of her stats have been stable.  The only concern is that she has been hanging onto just a tiny whiff of about 20-50 cc's of O2.  Since she is doing well in every other area, Dr. King has given us the okay to take her home on oxygen tomorrow morning.  I am a little nervous to take her home on oxygen, since she has so many other needs... a bazillion medications given anywhere from 2-3 times daily, NG tube feedings, wound dressing changes and all of her appointments with various doctors.  Not to mention all of the usual responsibilities in caring for a new baby and having a 2 year old at home.  Sleep deprivation, diaper changes, pumping breast milk every 3 hours, feedings every 3 hours... can you tell I'm a little overwhelmed?  We have been waiting 29 days to finally bring her home and now that it is here, I am doing everything in my power not to feel defeated by this next step... flying solo.

So far today, I have been packing up our room, scheduling appointments with our pediatrician, wound clinic and follow ups and taking care of Miss Zoe.  We also took another try at the Car Seat Challenge and she PASSED!  It helps that she was on oxygen this time.

Car Seat Challenge: Take II

I also met with the Respiratory Therapist with Home Health to learn how to use the portable oxygen tank that they are sending us home with.  When we do get home tomorrow, they will come to our house and set up a large tank that will last for several weeks.

Bad News.
When I dropped Lulu off at my Mom's this morning, they were off to run errands with Aunt Nell.  After getting to the hospital, I realized I hadn't stocked up on newborn diapers or Enfamil that we need to fortify my breast milk, because Zoe isn't gaining enough weight.  When I called my mom to ask her if she could pick some up while they were out... I could tell she had an uneasy tone in her voice.  She handed the phone to my sister and I was given the news that Londyn wasn't feeling well and even worse... felt pretty warm.  SERIOUSLY?!  Right now?!  They were going to take her home and then get her temperature.  When they called me back, it was at 102.  Next move... Tylenol.  I left the hospital around 6:30pm and headed home to get Londyn's jammies, favorite blankie, popsicles and children's Ibuprofen.  I arrived at my parents' house around 7:30pm and the poor thing was up to 105.  She was so miserable. We gave her a luke warm bath and then I snuggled her for a while.  She needed fluids, medicine on board and rest.  Worried sick... I still had a lot to get done at home to prepare for Zoe's coming home.  When I left Lulu, her temperature was 102.7.  It's 11:30pm right now and I just spoke with my mom.  Londyn has a little more oomph and is much cooler!  I am so relieved.  I had to leave both of my sick babies tonight and it killed me.

Resting at Gma's

We've decided to quarantine Londyn at my parents' house, so as not to bring Zoe home to a germ infested environment.  I wiped down most of the common areas in the house with Lysol and hope that is enough.  I hate that I can't be with Londyn when she's feeling so yucky.  I just want to snuggle her and be the one that makes her feel better.  Right now, I am depending on so many others to care for my girls... and here I am, blogging.  It just doesn't seem right.

Today was one of those days.  One of those days where you are overwhelmed and consumed with worry, doubt and fear.  I'm not proud of those feelings, but it's the truth!  I do believe that God doesn't give us anything we can't handle... but sometimes, I think he has one heck of a sense of humor!

Speaking of sense of humor... I love the nurses at Randall.  They have made all the difference throughout this experience.  Our first nurse on the Peds floor was Jessica, and she is truly a doll!  I just love her.  She left me this cute little not today.

Londyn Joy: It's Potty Time!

Have I mentioned how lucky I am to be Londyn's mommy? 

While we were at the hospital yesterday, Londyn announced that she needed to go potty... on the toilet.  Now mind you, this is coming from a kid who has despised the toilet and has repeatedly said, "I cannot love the potty" more times than I can count.

One of Lulu's quirks is that she is afraid of specific loud noises.  Loud music, TV and of course... noise she is making herself, does not seem to phase her.  But the blow dryer, vacuum, any power tools, lawn mower, garbage disposal and of course- public toilet flushing are grounds for meltdown mode.  She usually runs and hides in a corner or the nearest bathroom if said loud noises occur.

Quite frankly, potty-training has never been a high priority on my parenting list of things to do.  I have a hard time with messes... and when the mess of all messes can be contained in one small disposable little package (AKA diaper)... I am all for it.  Who cares if you have to change them on a regular basis? Changing them is much easier than cleaning them up all over your house, public venues and carrying extra outfits in case such an accident takes place.  Not to mention those moments when you forget to purchase a gift for the birthday party you're already late for... so you run to Target and are storming the clearance aisles for a suitable present.  You finally settle for something and then stand in one of the two checkout lines that are actually open... even though they have 15 registers (one of my pet peeves)!  And of course... your potty training child declares that they need to pee RIGHT NOW!  You must then forfeit your spot in line to run your potty-dancing little human to the nearest facilities.  This is a scenario that I dread, but knew would eventually be in my future... seeing as how no one really graduates high school in diapers.  

It was only a matter of time.

Back to yesterday at the hospital... after her announcement, she did indeed pee in the potty!  I thought maybe it was just a one-time fling... but from then on, she "needed" to go potty every 5 minutes after that.  We went home and let her run around in her nudey-pants to avoid frequent diaper changing and false alarms.  

Then, it was the moment of truth.  Poo-poo time.

Londyn said she needed to go potty.  She said she needed some books... which meant we might as well set up camp in the bathroom, because it was going to be a while.  I gathered some appropriate potty literature and parked it in the bathroom for a good 15 minutes.  When she said she was all done, I thought it was another false alarm... but boy howdy, was I wrong.  The girl did what she set out to do... and got the job done.  

I love how she chose right now... when we're in-between hospital, home and Gma Milne's to begin potty training.  But, I gotta give it to her... she's doing it all on her own.  To be honest, I'm not encouraging this potty business, but I do support it!  

If she wants to teach herself... then by all means, get it girl!

The proud potty-goer... doin' her thang!

Playing with toys at the hospital

Off to a lunch date @ McD's

Post Surgery: Day 24

Over the weekend, Zoe continued to remain a happy and stable baby.  Her vitals have been right on track and her incision is looking better.  

Andrew and I spent the weekend with Londyn, sleeping at our own house and enjoying the sunshine together as a family.  We spent lots of time with Zoe at the hospital, walked around the outdoor Bridgeport Mall, played on the playground and shopped at IKEA.  

Dr. King came in this morning to do an echo and everything looks just as it should.  He said that as long as long as her incision continues to improve and she fully weans off of the oxygen support, she can go home after her 10-day round of IV antibiotics is complete, which would be Thursday.  If all goes well, we will be able to take this sweet little bundle home on Friday.  Since I have posted several estimated times of departure... I am not expecting or counting on any specific day anymore.  Giving in to "Zoe Time" is much easier than fighting it.

Look at all that hair!