A goal met...

I did it!  I successfully fed Hope only breastmilk for a year, aside from the short period we had to fortify with formula to help her catch up on her weight.

When I found out I was pregnant with Hope, I was committed to at least trying breastfeeding.  I had no other goals than to simply try it out and see if it worked for us.  I was not breastfed, so I know you can be perfectly healthy without being breastfed.  However, I was curious to see if I could do it, and thought it was cool that I could possibly provide for my baby entirely through my own body.  When we found out about her heart defect, things changed a bit.  I realized I needed to do everything I could to help her.  Breastfeeding provides extra antibodies and immunities that non-breastfed babies don't get.  When she was born, it became very clear, very early, that we were going to have a rough road.    Its stressful enough trying to learn how to breastfeed a newborn, even more stressful when you are separated from your newborn and unable to try around the clock, and even more stressful when your newborn has health issues complicating pretty much everything.  I did my best to teach her to feed at the breast, but it was really tough for us.  First there was the learning curve, difficult for any new mom and baby, compounded by us not being together around the clock.  Then there was the fact that nursing can be exhausting for heart babies, and it definitely seemed to be for Hope.  Then at 8 days, there was the NEC (bowel infection) scare, where Hope was classified NPO (Nothing Per Oral).  She was not allowed to eat anything other than sugar water via IV until well after the surgery, which took place at 12 days old.  She was closed up 5 days later, and didn't really start to wake up until 7 days after the surgery, at which point she was not only weak, but also heavily sedated.  It wasn't until she was about 4 weeks old that we were able to try again.  And that was hard, because we felt a lot of pressure just to get her eating and have something to show for it.  I was only allowed to try once a day and it was always followed by a bottle.  While she latched and was definitely getting milk out of me, we had nothing to show for it, and we wanted to go home!  Bottles were easier.  Once we got home (40 days old), the pediatrician advised me I could try for twice a day, but still follow with a bottle.  Each time, she was still taking the same amount from the bottle that she would have if I hadn't nursed her, so it started to become clear to me that she wasn't getting much and taking a bottle was just working better for her.  Shortly after New Year's, right before she turned 3 months old, she gave up completely, screaming any time I'd bring her to breast.       

I began my pumping journey about 3 hours after Hope was born.  After they cleaned us both up, transferred Hope to Children's, and transferred me to my room, the nurse taught me how to assemble and use the pump.  It seems so funny to me now, since by the end I could have done it in my sleep.  At 5:30 in the morning, after having been up all night, I connected this foreign machine to my body in order to feed my child.  I got only a couple of mLs of colostrum, but boy did it feel good.  I very proudly delivered them to my baby girl later that afternoon.  I continued to pump for her, every two hours.  The nurses and lactation consultants advised me not to set an alarm in the middle of the night to pump.  Our situation was so stressful, they thought it was better for me and my supply to sleep.  If I woke, I often got up and pumped, but I didn't always.  I continued to pump through the time she was NPO and while she was sleeping and sedated and was able to get a nice little supply going.  Once she woke up and we started to try nursing, I'd nurse her, then give her a bottle, then pump.  Or have someone else give her a bottle while I pumped.  I eventually settled into a routine of pumping 6-7 times a day, through the holidays.  I didn't know how I'd keep it up, and my goal through those early days was to get to 3 months.       But somehow, I kept going.  Before I knew it, we had made it to 6 months and it had become routine.  I scheduled my life around it on

Deja vu

Feeling better and waiting to go home

Its been a scary few days.  Scary enough to land us in the ER and back in the same place we were exactly a year ago.  I've found myself reliving a lot of things, but also looking at things with whole new eyes.  I've reconfirmed that there is nothing quite like mama's intuition.

It all started on Tuesday.  When I dropped her off at daycare, she looked funny to me.  Her eyes were a little puffy.  This freaked me out a bit because a fellow heart mom had just landed back at the hospital and one of her son's symptoms were puffy eyes.  I mentioned it to her daycare providers.  Well, it turned out my mama's intuition was spot on.  Around 10AM, I got a call from daycare that she had a fever of 101.  I had to see two more classes, so I went down and picked her up and brought her back to my room.  It was clear she was feeling pretty lousy, but she was so patient and good as she waited for me to take her home.  The kids were so excited to see her and wanted to hold her, but I told them it was better they didn't.  During the second class, she fell asleep in my arms while I was teaching.  On my way home I called the pediatrician and the nurse told me to give her some Tylenol / Motrin and see if the fever responded to it and if so, that was a good sign.  It did, so over the next 24 hours we continued to monitor her.  Both of us were worried and got up several times through the night to check on her.

I had to make the difficult decision as to whether or not I should stay home on Wednesday or if we should have Chris' mom come up.  It is the end of the quarter at school and I have so much to do at work, but she comes first.  I wasn't confident I knew what to look for and didn't want to put that burden on Chris' mom.  Mama's intuition told me I should stay home and boy was it right.  I knew I wouldn't forgive myself if she got worse.  By 4AM Wednesday, I knew I had made the right decision.  She spiked a fever of 102.5.  I gave her some Motrin and got her back to sleep, and she slept until 9:30.  By morning, she seemed almost better.  She wanted to eat and play, but these things wore her out and she went back to bed for 3 hours.  She woke up in the middle of this nap and played in her crib for a bit, which seemed like a good sign.  When she woke up again, she was screaming and burning up.  I gave her more Motrin and called the pediatrician.  We decided I would come in in the morning if she wasn't better.  45 minutes later and she wasn't responding to the Motrin, so I called the pediatrician back and asked to come in that afternoon.  They told me to come in at 4:30 which was about an hour and half from when I called and wasn't with her normal pediatrician.  By the time I got there, her temp was up to 103, her heart rate was 170, and we couldn't get the pulse oximeter to work, but it was reading 90% (we learned later this wasn't a true reading, but it made the situation much scarier).  Her O2 levels are usually 99-100% and when you're dealing with a cardiac patient, any time O2 levels dip below normal it is could be an indication that something isn't right.  Getting a pulse ox reading was my big reason for wanting to go to the pediatrician.  Anyway, she seemed worried and I had the sense that it was time to go to Children's.  I asked her if that is what she thought I should do and she agreed.  She took a look at Hope's breathing and assured me she wasn't in respiratory distress, so I had time, but I should go right away, which looking back on, is pretty scary.  I considered going home and grabbing a couple things in case we were to be admitted, but we were already 10 minutes closer to the hospital.  So we got in the car and headed right into Boston.  At rush hour. 

Since she was born, I have always said if she ever needed to go to the ER, it would most certainly be Children's, no matter what time of day.  Anyone who cares for her knows that if something happens to her, that is where she is to go.  So I didn't care it was rush hour.  I got in the car and on my way there called Chris and told him he should email her cardiologist, who wrote right back and told us he would also let them know we were coming.  On the way there, it was clear that Hope was declining.  I didn't hit much traffic until I got about a mile away from the hospital and then it was standstill.  I was really scared, and calling an ambulance crossed my mind. 

When we finally got there, it was clear I had made the right decision to take her into Boston.  They were waiting for us.  I gave them our last name at check in and they said "Hope?" and within 2 minutes we were being taken back to a room.  Every time I have ever been to an ER, I have been taken to a room and waited for a while.  Not so this time.  We had a team of 6 on us immediately, including a cardiologist.  They were not messing around.  By the time we got there, she had a fever of 104, her heartrate was over 200bpm, she was lethargic and clearly in bad shape.  They put in an iv,  administered fluids, gave her Tylenol and Motrin, did a chest x-ray, took blood, took a urine sample, and told us were going to kept overnight for fluids and observation.  They kept us down in the ER for several hours until her heart rate got stable enough to move us up to the 8th floor, the cardiac impatient unit.

The next 12 hours she was in and out of her fever, but by late afternoon yesterday, she was clearly feeling better. Unfortunately, this was just a little too late for them to feel comfortable discharging us.  So we got to spend another night.  As disappointed as I was in not going home last night, I'm happy she got some more fluids and that we'll be taking her home nice and hydrated.  Her heart rate is still high, but much better and her fever is low.  It would have been better for both of us to sleep in our own beds, but at least now we can take her home confidently.  Hope is clearly done with sleeping here.  She was awakened at 4 for vitals and then pitched a fit for the next hour.  Nothing I could do would settle her down and she definitely didn't want to be put back in the crib.  She had an IV, which didn't quite stretch to the chair bed, not without putting the crib side down, which I couldn't do without putting her down because it was on the other side of the crib and the IV didn't stretch.  So I stood for a while until I managed to calm her enough just to put the side down and sit down.  We have a roommate, so this was pretty stressful.  She woke up this morning hungry but very tired and was only awake for about an hour.  She has been sleeping again for over an hour. 

I'm sitting here right now waiting to be discharged.  They told me about an hour ago that they would get her paperwork going and get us home.  These things take awhile in the hospital, so I don't really expect to be home before noon. 

It has been really weird being back here on the same floor we basically lived on for 6 weeks this time last year.  I was definitely relieved when they said they were admitting us to cardiology.  I knew that meant we were coming up to 8E and it wouldn't be completely foreign.  Since we've been up here, in addition to being in familiar surroundings, there have been plenty of familiar faces.  Nurses and staff who told us they remembered us.  Today, the nurse who is caring for our roommate was very excited to tell me that we were one of her first patients when she started here a year ago.  The attending doctor is the same doctor who made the final call on her not being sent home to grow last year, which while we hated his decision, it was the right one.  Our cardiologist has been in to see us a couple times, just to check in.  We didn't get to have any of our favorite nurses, or even see them, but nonetheless, it is really good to be surrounded by familiarity.            

This whole experience has been one of deja vu, but like I said, after a year's experience in being a heart mom, I have looked upon it with whole new eyes.  I am more confident and more comfortable speaking up.  Yesterday at rounds, instead of feeling like I had no idea what was going on like I did last year, I clearly knew more than the med student making the rounds.  I was able to participate, speak up, and fill in the gaps in her history.  They were happy to have me there.  As I walk around the hospital, I know where I'm going, I know what to do and there has been nothing foreign to me.  We quickly settled into our old routine of Chris coming in after rush hour and letting me go home for a couple of hours to hang out with Sanders, run, shower, and get some stuff for the night and get back before rush hour. As much as it sucks being in the hospital, I am happy to be here and not somewhere else.  Going forward, I am much more confident in dealing with a fever.  I know I didn't react and feel like my timing in when I brought her in was pretty good. 
 
Thank you to everyone who has checked in. Her pediatrician has called twice (including at 10:30 Wed night) and has been following along online.  Her daycare providers called to check in this morning.  Lots of people have emailed, texted, etc.  Someone sent us a teddy bear, balloon, and chocolate, but there was no card - we finally found out who it was - thank you.  We are so lucky to have so many people who care for her so much. 

Unfortunately, we had to postpone her Heartiversary party until Nov 7.  I sent an email out yesterday and hope I reached everyone, though I will likely send another reminder tomorrow so that no one shows up.  This was a hard decision.  We really wanted to have the party and we were all looking forward to it.  But we also want Hope to be at her best and enjoy the party.  Fortunately, we were able to also postpone the food and Chris' mom was able to postpone the cake.  I'm hoping that because we postponed it, even more people will be there to celebrate with us :) 

The next post will be of a happier sort and will definitely have more pictures - Hope's first birthday, which was last Saturday! 

A place of peace

I wrote this last week, but just posting now...

Mommy and Hope selfie by the roses

Once again I find myself blogging from one of my favorite places, the Prouty Garden at Boston Children's Hospital.  I try to soak up every moment I can here, because I never know if it will be the last. Prouty is in danger of being replaced by an expansion of the hospital.  Each time I come here, I wonder how the hospital could do this.  When I got here I felt stressed from the drive in, but as I sit here listening to Hope babble with the happy sounds of kids playing and the calm of the fountain in the background, I feel peaceful and renewed.  This afternoon, I bonded with another heart mom whose 6 month old is currently inpatient after her second open heart surgery.  I watched nurses take laps around the garden, undoubtedly escaping the intensity of the hospital.  I saw meetings taking place.  I watched bleary-eyed parents without their kids getting a breath of air.  Cancer patients playing with their parents.   A kid playing catch.  It is a magical place and it's hard to believe that on the other side of these walls hospital life continues and out in the street, rush hour is raging.  I can say without a doubt, you can't leave Prouty without feeling a sense of renewal.

When I'm here, I don't want to leave.  It feels like home.  Too much about this place is familiar.  It was a refuge on the worst of days when Hope was inpatient.  It was the place she first saw the light of day outside hospital walls.  The roses are blooming and I can't help but be reminded of all they represent to me.  We posed in front of the same roses with our beautiful 10 day old baby girl.  This was two days before surgery and the garden was the only place we could take her to be outside.  Today she is playing happily by the fountain, trying to crawl and trying to stand.  She is engaging other people who are also enjoying the garden and making them smile.  Back then, she was npo (nothing per oral) because of the infection, today she helped me enjoy a frozen yogurt.  We are blessed to have this place, I just hope future patients will also have it.  

Then...and now. 

Practicing crawling in Prouty

We came down to the hospital to see Hope's endocrinologist.  Right after surgery, her thyroid crashed, a syndrome they call "sick thyroid".  She has been on thyroid meds ever since.  Until now.  We've officially been given permission to discontinue meds.  This will be the first time since she was born that she is not on anything.  No. More. Meds.  I can't believe it.  It means we will need to get bloodwork weekly for a little bit, then monthly.  We have to watch her height / weight diligently.  If anything goes awry, she goes back on.  

The other amazing news is her weight.  We hadn't seen a doctor in 2 months so she hasn't been weighed.  Back in July she was just about 15lbs and 5%.  Today she is 16lbs6oz and 10%!  She loves to eat :)

Finally, Hope crawled for the first time on her 11 month birthday.  She gets better by the day, but isn't mischievous about it.  Mostly she uses it to get to Sanders.  He is becoming more and more tolerant and just lets her play on and around him.  

Getting ready to crawl in her sleep

There's not much else to report.  I've been back to work for three weeks now.  It's like I never left.  I definitely miss being with Hope all the time, but love being back to work, even with all the stress it brings.  Hope is doing great at daycare.  She loves seeing my homeroom in the morning and waves and shrieks at all of them as they come in.  At the end of the day, she is happy but tired.  

Hard to believe this little peanut is 11 months today.  It's gone so fast, yet the time I spent in this garden 13 months ago seems like it was centuries ago.  Back then, I was the scared new mom to a medically fragile little girl who was so sick, seeking refuge in a place of great peace.  Today, I am a far more confident, seasoned mom of a thriving, healthy (for now) little girl who is tough as nails, seeking a moment of peace in a hectic life.  

All good things come to an end...on to the next good thing

See?  She does cry

Well, it's been a while since I last posted.  I won't even try to offer an apology for this.  We have been too busy having lots of adventures and living up the last few months of my maternity leave (aka summer).  But, all good things come to an end.  On Monday, I head back to work. Today is my last day of maternity leave and now, at 4:15 PM, it is just the weekend.  I can't believe how quick 10 and a half months went, even with a horrendous winter stuck inside with a brand new baby.  It was such a wonderful 10 months.  I loved being home.  I am so grateful I was able to be home with her for so long.  I am sad to see it end, but I do look forward to getting back to what I love.  The past few weeks have been filled with anxiety for me, but as it has gotten closer, I am starting to feel excitement and the back to school itch.  I am ready and I am confident this is the right decision, even if it feels so very bittersweet now.   

There are things I will miss most: 

- Relaxed mornings without an alarm.  I've only had to set an alarm a handful of times.  Mostly, I've relied on my body or Hope to wake me up.  This doesn't mean I've been sleeping in, quite the contrary!  Usually I'm up before 7.  I like to get my run in before Hope wakes up, and since it takes me at least 30 min to get out of the house, that means I'm often up by 6.  The light of summer has made this easy and it is getting harder and harder as the sun rises later and later.  But I will miss the easy pace of our mornings, where we didn't have to be anywhere if we didn't feel like it. 

- Being with Hope all of the time and having her smile continuously brightening my day. 

- Not grading papers on nights and weekends. I love my job and I love my students, but hate that my work comes home with me on weekends

- The flexibility of not working.  Things are about to get a lot more scheduled. 

There are things I look forward to:

- Hope getting to hang out with the same kids every day, and watching her begin to build relationships outside of our family, with kids and adults

- getting back to me and having some of my own time, where I am doing what I love

- seeing my coworkers every day

- seeing my students and being present in their lives again

- having something to get dressed up for every day

Things I fear:

- the laundry / housework - how am I going to get it all done?

- not having the time to exercise

- not having the time to grocery shop / cook healthy meals

- finding time for everything

- not having enough alone time with Hope.  I've been spoiled and had Hope to myself a lot.  Between infertility and Hope's heart defect, after every thing we went through, I really need that alone time.  I'm not very good at sharing her, not because I don't want to but because it is physically and emotionally hard for me to hand her over to someone else.  I know I can't hold her forever, and I don't know if there will be another one to hold, so I cherish all the baby snuggles I can get.  I think I take a picture every time she falls asleep on me (which is not very often).  She has been a little extra snuggly the last week or so.  It is as if she knows.  Today, she fell asleep while we were out at lunch with a bunch of other moms.  

Sleeping at lunch on the last day of maternity

Anyway, enough about me.  Like I said, there were a lot of adventures this month.  I am going to run this entry as a photo journal.  I've taken a lot of photos over the last three months and it is the easiest way to remember what happened.  I apologize in advance for the sheer number of photos!

Hope has grown, both physically and as a little person.  I spent some time this week organizing her clothes and had to put a few things away.  While I was doing this, I ran across her newborn clothes and I was completely blown away by how small she was.  In particular, I found the little PJs she wore on Thanksgiving, 2 days after she came home.  She was close to her smallest at this point, and she swam in these PJs.  She has more than doubled her size.  Her little personality is really beginning to shine.  She manages to light up any room she enters.  It delights me to see the smiles she inspires in friends, family, and perfect strangers no matter where she goes.  She makes friends with everyone and if this continues, she is going to be quite outgoing!   At least once a day someone asks me if she is always that happy.  The answer is yes.  She is always happy, always smiling, always happy to do whatever it is we're doing.  I hope she stays this delightful.  She is a blessing and a joy to be around.

Since I last blogged, Hope has been improving her sitting skills.  Here she is sitting in a grocery cart for the first time back in May.  This may be one of her favorite activities.  The first time she did it, she looked around in wonder and smiled at everyone.  Now she puts on a show.  She will stare people down until they look at her, at which point she has already begun waving like crazy.  When they smile at her, she claps.  It's hilarious and embarrassing at the same time.   She also gets excited by all the food around her.

In mid-May, we went on our first solo mom-daughter road trip to NJ.  We hadn't taken Hope on a long road trip since Christmas.  Obviously, there is a big difference between a 2.5 month old and a 7 month old!  One less adult also makes a big difference.  But I planned well and it all went down smoothly.  We left right after her breakfast and right before nap time.  She fell asleep pretty quickly and woke up after about 2 hours, just in time for us to stop at Georgie's diner in West Haven CT.  It was a beautiful day, so we sat on the patio.  This place is very kid friendly and offers an extensive gluten free menu.  They also were very friendly to Sanders and allowed him to join us on the patio.  They even brought him a bowl of water.  I felt like I was on vacation.  After we ate, went to the bathroom and changed Hope's diaper, we got back on the road.  She did great and slept most of the rest of the way.  Unfortunately, we hit a little traffic in NYC and the last half hour was pretty rough.  We were all tired of being in the car and Hope was hungry. 

Sanders enjoying the patio at Georgie's

We had fun with Grammy and Granddaddy (the names my parents have chosen to be called, at least until Hope decides otherwise) showing Hope all of our favorite Ocean City places and introducing her to the neighbors.  It was a little cold for the beach, but we went for a couple of walks anyway and posed in the sand.

Hope enjoying her first lunch at our favorite place, Kessel's Korner, in Ocean City

First time enjoying the beach in Ocean City

First trip to the boardwalk

Bonding with my cousin Ashley

Hope and her granddaddy

Hope loves eating.  When I last wrote, she had just started to try solid foods.  Now, she is totally into them and turning into quite the little gourmand.  We give her everything we are eating.  I rarely prepare special meals.  We like to offer lots of different flavors, including spices, so that she develops a broad palate.  Today she tried wasabi.  She made a little bit of a funny face, but was relatively unfazed.  One of her favorite early foods was broccoli.  Currently, I'd say bananas, chicken, and cheese are at the top of her list.  Oh, and ice cream.  If she sees it, she goes nuts.  She comes from a long line of ice cream lovers, so this isn't surprising.  I don't really think it is good for her to have a lot of ice cream this young, so we try to not to eat ice cream around her.  She now has two teeth, with a few more on the way, and she is getting good at using them.  She usually eats very eagerly when food is offered and makes the cutest little yum yum noises.

Broccoli!

Enjoying Mommy's cone

Enjoying a taste of Mommy's birthday donut at Brown's on the boardwalk

Feeding herself mashed potatoes

7 Months Old!!

Look who is 7 months!

Right around when she turned 7 months, we took her on her first hike.  She did pretty good in the carrier I had, and fell asleep on the way back down.  Sanders was really happy to get out and do something fun.  Here we all are on Mt Watatic, a mountain in North Central MA.

Daddy's girl

Family selfie (minus Sanders)

Speaking of Sanders, he still isn't completely sold on Hope.  I think he'd like us to return her, but with the addition of solid foods, I think she is growing on him.  I find him sitting near her more often and he never misses a meal.  Today he spent most of the day lying by her side while she happily played next to him.  She even hugged him a few times.  Hope just adores him and as much as he wishes she would disappear, he is really good with her.  He lets her poke him, bang on him, pull his ears, stick her fingers in his eyes, nose, mouth, etc.  He's very patient.  She seems to love all animals.  She goes nuts at the shore when we bring her near Gabby, and she gets excited when she sees Pablo.  Her most recent trick is to bounce (she isn't crawling, so this is how she moves) over to Pablo's cage and stick her fingers inside.  When we're out walking, she grunts at all the dogs we see.

A girl and her dog

Checking out Pablo

From the time we brought her home, we have been excited to show her the world.  This summer we've really had the opportunity to do that.  We try to do one fun activity every weekend.  Sometimes we sail, sometimes we fly, sometimes we hike. In early June, we took a day trip up to Cape Ann to have some lunch.  She has been on both sets of grandparents boats and is a regular passenger on her daddy's plane.  She was less than impressed with the boats.  I don't think the restrictive life jacket was her favorite thing in the world.  The plane is fine.  She usually falls asleep.  We've only had one flight where she didn't do well, so I pulled her out of her car seat and all was well until she got squirmy and I had to put her back in, which did not make her very happy.

Sailing

Not so sure of granddaddy's boat

Exploring Cape Ann.  Early summer lunch in Gloucester

Relaxing in the plane in the backseat with Hope

Yes, mommy, I'm awake back here 

Airplane baby

Riding the carousel at Wonderland.  Hope was unimpressed

She had lots of fun on the beach this summer and even has the tan to prove it.  From the time I got pregnant with her, we prayed that her skin would be more like mine and she wouldn't be too fair. Chris joked all last summer about me sitting in the sun and how I was going to make the baby come out tan.  Seems like we got our wish.  We've been outside most of the summer and she's been wearing SPF 50, but still managed to get quite the tan.  It's really cute.  Maybe she'll be a future OCBP lifeguard?

Future guard

Mommy and Hope's first real trip to the beach

8 Months!!

Playing in the sand to celebrate 8 months!

Sleeping naked on the beach

Playing in the water

Sitting in the chair like a pro

In July, she got to know most of my extended family on my Dad's side.  My 3 cousins come up for a week every summer with their kids.  This year, it was 8 kids 13 and under.  It has been so fun to watch them all grow and now they will watch Hope grow.  The kids had a blast entertaining Hope.  She thought they were just great.  This year we got to all celebrate the fourth together

Happy 4th of July!

Beach baby

Holding court

Cousin Sara and Hope

Can you see her personality in this picture?

The whole gang

 In addition to my cousins, July brought another set of really special visitors.  My Spanish sister, Bea, was here with her husband, Alvaro, and their baby.  She lived with my family 20 years ago.  This was her first trip back to the USA, though we have seen her many times in Spain, including at their wedding.  Her whole family is very special to us.  Her 3 brothers also spent time with our family, either living with us or living in the same town and spending time with us.  Her daughter, Julia, is just a few months older than Hope, so it was fun to see them together. This is just another example of how the exchange student program makes the world a smaller place.   

Sisters / Cousins

Hopefully there will be more pictures like this as they grow

Enjoying their first of many coffees together



Matching dresses

Bea had the magic touch

Pretty blond baby

9 Months!!

As she has gotten older and become more independent, she has different ideas on what she'd like to do with her monthly sign.  At 9 months, she really just wanted to wave it around and eat it.  I tried to take it so that I could get a picture where you could actually see the sign.  Instead I got this.   She definitely has opinions these days!

The beginning of this month, we took a trip up to Bar Harbor to visit some family friends.  It was a picture perfect day and I have to say one of the most beautiful places we have ever landed.  We left late morning and were there in time for a late lunch.  We walked around town and saw some of Acadia National Park.  It was a big enough taste that we'd like to go back and spend more time there.  Chris had never been.  I was there 6 years ago to run the Mount Desert Island Marathon.  Hope enjoyed the day, and as always, charmed everyone with her sunny disposition.  

Coming in for a landing

Ready for lunch

Mmmmm.....Lobster bisque

Is that for me?

Yep, she's got another cone

Look what Dad caught

Pretty baby on top of Cadillac Mountain

With our family friends Sam and Maxine

Mommy and Hope in Bar Harbor

10 Months old!!

On August 17th, Hope turned 10 months old.  As each stage goes by, I keep thinking it is my favorite stage.  Then I get to the next one.  This is truly my favorite stage.  She's constantly waving hi and bye at people, and clapping her hands.  She does both of these things on command.  She bounces up and down to get places.  She talks...a lot.  Some words we think we have identified:  "mama", "dada", "daw" (dog), "Hi", "Bye."  She is playful.  She is easy going.  She eats well and sleeps well.  We are really lucky, but I guess in a way, we paid up front.  Hope can do so much and she may be the coolest little person I have ever met.  I am in awe of her and keep wondering what I did to deserve to be her mom.  She is captivating, joyful, smart, and just really awesome.  But I'm not biased or anything....

She's always had quite the personality.  The nurses in the hospital used to laugh at her famous stink eye.  The feeding team got it the most frequently.  The stink eye is still alive and well.  Last week I went to have blood drawn to check on her thyroid levels, which we are continuously monitoring because her thyroid had shut down when she was so sick.  She was not happy about it.  She complained the whole way out of the lab and into her carseat.  As I sat at a red light, this is what I saw in the rearview mirror.  Lol.   One pissed off baby.

We spend a lot of time around my running club.  It's what I do when I'm not being Hope's mom and more often than not, she joins me on my runs.  Just last week I bought these for her to wear to my running club's August race.  She wore them proudly.  I can't wait until she is running on her own and can run alongside me.

Two weeks ago, we took our last summer trip to Ocean City.  I got to do one last swim in the Ocean and witness this beautiful sunrise:

Chris' parents joined us down there, so Hope got to have all her grandparents in the same place.  It was a nice trip. We will go back one more time in September.

We have spent this past week getting ready to go back to work and transitioning Hope to daycare. She will be going to the daycare at Malden High School, and will be in the building with me.  We went for two half days this week.  The first day, I went with her and observed.  I was impressed and happy with what I saw.   The second day, she went by herself and I went up to my classroom to get some stuff done.  Hope did great both days and seemed happy.  It definitely wore her out, and there will be some schedule / feeding adjustments to make, but overall, she's going to be just fine.  It was clear that she will be loved and cared for while she is there and that is what matters most.

Here are a couple more pictures from this month:

lunch with her future girlfriend Saoirse

Starting her young

I have no idea how she got under here, but apparently, this is where you play the xylophone

Petting Sanders

The only thing I didn't really touch on is her health.  Funny how that used to be a focus for me, but given how well she is doing, sometimes I forget how sick she was. We've only had two doctor appointments since my last blog and one was just her 9 month well visit.  The other was with the endocrinologist.  At both appointments, her doctors were pleased.  She has moved up to the 4th percentile for weight.  She wasn't even on the chart when we came home, so this is huge and the pediatrician was practically doing a happy dance after she got weighed.  She's hitting all her milestones, but she is still a little behind on gross motor, which really isn't surprising.  This basically means she's not crawling yet and if she were a normal baby, we may not even really be concerned yet.  The endocrinologist and I discussed potentially getting her off the thyroid meds by her first birthday, which would make me really happy.  It's a real hassle to have to crush up a pill every day and give it to her, but we'll keep doing it if she needs it.  What's really amazing is that that is all she is on.  We have not seen her cardiologist since May, when he sent us home and told us not to come back for 6 months, that she was too healthy.  We have a slew of appointments in the next few months, which has added a lot to my anxiety of going back to work.  It is really hard to schedule appointments around work.   Some of the appointments we have coming up should be pretty interesting.  First, we have endocrinology, where they may tell us we can stop the meds.  Then we have genetics in Oct.  Back in May, we had a micro array (blood test) done to check her genetic make-up.  Specifically, we were looking for 22q11 deletion, also known as DiGeorge syndrome.  Its a deletion on the 22 chromosome that is as common, if not more common, than Downs syndrome, but is not always as easy to identify.  Some babies you can look at and know, others you can't.  There are people that live their whole lives and don't know they have DiGeorge.  It is commonly associated with Hope's particular heart defect, so she is high risk.  The general opinion is that she doesn't have it, and if she does, it is mild.  The biggest concern for Hope with 22q would be learning delays.  The other interesting appointment we have is with the  Cardiac Neurodevelopmental Program to see how she is progressing.  And then at the end of November, we go back to her cardiologist,  So all is well.

This was definitely a long blog.  Thanks for reading.  It has been a really amazing 10 and a half months and a great summer.  I hope to have some time to update the blog again after my first week at work :)