Perfect No-Fuss Vanilla Ice Cream

by Sheryl Dagostino on July 4, 2013

Mint Chocolate Chip Ice Cream

This is the base recipe I am experimenting with for all my new ice cream endeavors!  I apologize for not having a photo of this particular one.  The photo here is of the Mint Chocolate Chip Ice Cream which used this delicious recipe version as the foundation.

This is a Philadelphia style ice cream, meaning no eggs or cooking involved.  I was able to substitute coconut sugar with no problems, but I did use my Kitchen Aid stand mixer with the whisk attachment to be sure that the coconut sugar became fully incorporated and the “cream” was not grainy at all before refrigerating.

Makes One Quart

2 cups organic heavy whipping cream
1 cup organic whole milk
3⁄4 cup organic raw coconut sugar
1 Tablespoon organic vanilla extract

In the bowl of a stand mixer using whisk attachment, blend together the cream and milk on low speed.  Add in the coconut sugar and whisk/blend on medium/low speed until the coconut sugar is dissolved – be careful not to turn your mixer up too high or you will end up with whipped cream!  Take a taste of the blend to make sure it isn’t grainy and there should be no coconut sugar visible in the mixture or on the bottom of the stand mixer bowl.  Once you are sure it is fully blended, add vanilla extract and blend on medium/low until incorporated.

Cover and chill the mixture right in the stand mixer bowl (unless you have other plans for delicious creations of course) in the refrigerator for at least 5 hours or up to 36 hours.

Following your ice cream maker’s instructions, churn the ice cream.  I own this one and the churning time is about 15 minutes.  It has also depended on the temperature in my kitchen (warmer takes longer).

The fresh-churned ice cream will be a soft and delicious soft-serve ice cream – eat some now and then place the rest in an airtight container in the freezer for later!  Or eat it all right away.  It may be very tempting to do so…

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Birthday Dessert: Summer Cocoa Shortcake

by Sheryl Dagostino on May 29, 2013

birthday dessert 1
So I have taken (stolen) a little time today, Memorial Day, to prepare myself a special and different (as per my usual) birthday delight.  Since I recently purchased an ice cream maker, it does involve ice cream.  In fact it involves the very first ice cream I have EVER made.  EVER.  No pressure, right?  After pouring over miles and miles of ice cream recipes Google and my favorite Paleo Facebook pages and websites shared with me, and getting confused, frustrated and downright overwhelmed, I finally decided on my first ice cream recipe to tackle.  After preparing the custard and getting the “Summer Cocoa” ice cream base in the fridge this morning, I came upon a recipe for Gluten-Free Chocolate Biscuits.  It was a totally accidental and spontaneous vision that showed up in my Facebook news feed.  I was curious.  And intrigued…

It looked as if the ice cream was going to get a partner in crime!

In celebration of my birthday, I’ve decided to make Summer Cocoa Shortcakes.  With the remaining container of cream, I shall whip it up fresh with some vanilla and a tad bit of maple syrup and layers of Summer Cocoa Ice Cream, Chocolate Biscuits and Whipped Cream will party in my kitchen in joyous celebration!  Never before has my home seen such a dessert – all homemade – all gluten-free/refined-sugar-free.  I had fun and prepared it for each of us in different ways.  There is more to be done with these three ingredients an I have an idea for the next…  we’ll be seeing this again —

**UPDATE**
This dessert is off-the-hook.  You may go back for seconds (even if you don’t usually like dessert)  The Summer Cocoa Ice Cream tastes like your favorite ever soft-serve – I guarantee it.  The combination of the ice cream, biscuit with whipped cream and chocolate sauce was reminiscent of one of my favorite birthday cakes of all time:  the Carvel cake.  I didn’t mean to do it, but created an old favorite with the best ingredients I could use – made in my own kitchen.

Summer Cocoa Shortcake
ice cream, chocolate biscuit, whipped cream

Summer Cocoa Ice Cream
makes about 1 1/2 quarts

1/4 cup powdered raw cacao
1/2 cup coconut sugar
1/4 water
1/4 teaspoon salt
2 cups cream
2 cups whole milk
2 egg yolks, slightly beaten
1 teaspoon vanilla

Whisk the cacao, coconut sugar, water and salt together in a medium saucepan.  Really whisk it until the ingredients are blended well.  Heat over medium heat until boiling then simmer for 2 minutes.  Add the cream and milk.  Whisk to blend and heat just until little bubbles appear around edge of saucepan.

Pour a cup of the cream mixture slowly into the egg yolks, whisking at the same time to temper.  Once incorporated, add tempered yolk/cream mixture back into the saucepan. Cook over low-medium heat - stirring constantly – until custard reaches a temperature of 170 degrees F.

Chill overnight – or at least 5 hours in the refrigerator.  Following your ice cream maker’s instructions, process the mixture.  The ice cream is like a wonderful soft-serve after about 10 minutes (this is my favorite).  Once you place it in an airtight container and freeze for a couple of hours, it will still be somewhat soft.  After an overnight freeze, it will be more like a traditional hard ice cream.

birthday dessert 2

Gluten-Free Chocolate Biscuits
Elana’s Pantry

1 1/2 cups blanched almond flour
1/4 cup coconut flour
2 tablespoons cacao powder
1/4 teaspoon sea salt
1/2 teaspoon baking soda
3 eggs
1/2 cup honey

Preheat oven to 350 degrees and set rack in center.  Line a cookie sheet with parchment paper.

In a large bowl, combine almond flour, coconut flour, cocoa, salt and baking soda.  In a smaller bowl, combine eggs and honey.  Stir wet ingredients into dry.  Batter will be wet, so using a 2 tablespoon scoop, scoop batter onto a parchment paper lined baking sheet.

Bake at 350° for 12-15 minutes.  Cool biscuits completely and set aside.

Chocolate Drizzle

3 tablespoons Not Your Sugar Mamas Be Saucy
1/2 tablespoon unsalted butter, cut into small pieces (optional)

Warm the saucy sauce in a small saucepan slowly over low heat.  If using butter, add pieces to the warmed saucy sauce and stir until melted.

birthday girl dessert

Whipped Cream

1 pint organic heavy cream
1 teaspoon real maple syrup
1/4 teaspoon vanilla

With whisk attachment, whip cream on medium-high in electric stand mixer (or use hand mixer).  Once soft peaks form, add the maple syrup and the vanilla.  Whip for a minute or so more to combine.

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Ari – part three

by Sheryl Dagostino on May 24, 2013

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As Ron and I waited on edge for Ari’s MRI to be over, we were mostly silent.  Lost in our own thoughts, trying to breathe through it all, separated from our little infant for the first time since he had been born.  I remember feeling dazed.  I know I was in a state of shock and utter exhaustion.  I had Ari’s bottle ready for when he was done.  He was definitely going to be hungry.

We had expected to be called on the room phone when Ari was in recovery and then led downstairs.  The room phone rang after about 3 hours of waiting.  We were told that Ari was being brought back up to us, rather than us being led down to him.  I was jittery with anticipation of having him in my arms again to comfort, kiss, feed, whatever he needed!

We heard him before we saw him.

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Ari was in a frantic state crying all the way down the hall and into the room.  He was being wheeled on the crib bed so we just stayed out of the way until he was in the room.  The doctor immediately saw the look in my eyes and reassured me “He is hungry – don’t worry.  He did great!”  He picked my crying little guy up and placed him in my arms.  Ari was loopy for sure as he cried hysterically.  I sat down and put the bottle in his mouth.  He was so grateful and stopped crying for a few gulps.  He started crying again, but came back for more milk.  The doctor looked satisfied that Ari was feeding and happy to be in my arms again.

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The doctor told me “not too much, a little at a time” and I did my best to comply!  Ari was starving – it was the longest he had gone without milk!  I put him up on my shoulder to burp after a round of gulps.  He had gotten through half the bottle already.  He seemed confused, but stopped crying eventually and was looking about.  I smothered his little head with kisses and told him how brave he was and I loved him so much!  I just couldn’t nurture him enough.  Everyone in the room just watched and we were all relieved that Ari was responding to the bottle, to his mama, and seemed to be recovering from the anesthesia fairly quickly.  He had his fill of the bottle and then just relaxed in my arms.  I honestly don’t remember if he fell asleep right away or if I lay him down in his bed.  It was such a harrowing thing to see him in that state of hunger and the drug-induced out-of-it way he was looking at me and everything around him.

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The EEG had been a special type that was able to to remain on Ari throughout the MRI so that the brainwaves could continue to be monitored throughout.  Once the MRI was done, the technicians removed the EEG electrodes so Ari was no longer all wired up.  Now that the MRI was done, we had to wait for the image results which would be compared to the EEG read out that had been gathered over the 24 hour period.  We were told this would happen fairly quickly and that results would be shared later that day.

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I know we rested after all that.  I remember falling asleep briefly on the couch/bed/thing and being woken up when Dr. Thibert came in the room with the results.  I was still half asleep and had to work hard to pay attention!  This is what we had been waiting for after all!  We were told that Ari did NOT have a tumor, that there was nothing inherently wrong with his brain.  There was a little area, in the back of his brain, on the bottom right side that apparently did not “fold” or “unfold” correctly – a “dysplasia”.  A tiny little blip that was just off and the EEG readout confirmed that the activity was originating from this tiny spot.  The area was causing a lot of activity that was building up to the extent of spreading through the rest of his brain and causing the clusters of seizures to happen.  The good news was there was no tumor, nothing to ‘grow’ or even get worse.  We were also told that they saw another suspicious area in the center of Ari’s brain that looked to be a calcified small area or ‘tuber’.  The diagnosis could be more than just a “dysplasia” based on this other finding.  There was a chance that Ari could have a rare genetic disorder called Tuberous Sclerosis (TSC).  Now this was a little more scary.  None of us had ever heard of this disorder.  It causes little tubers that are non-cancerous to grow in certain organs of the body.  The tubers may interfere with function depending on where they develop.  It doesn’t all happen at once and they can come at any time!

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Ari was given a tentative diagnosis for Tuberous Sclerosis based on the MRI results.  We were also told that he would be put on anti-seizure medication.  I was already against having him being given any steroid-based medication due to what I have read about them.  Thankfully, a medication had recently be approved by the FDA for infantile spasms that did not exhibit such terrible side-effects – Vigabatrin.   Based on the diagnosis, Ari would have to undergo further testing to other areas of the body that are usually effected by tubers, including an EKG (heart), an ERG (eyes), a renal ultrasound (kidneys).  We were referred to the best specialist at MGH who also happened to be the founder and head of the Herscot Center for Tuberous Sclerosis at MGH, Dr. Elizabeth Thiele.  Dr. Thibert worked with Dr. Thiele and we were reassured that we were in the absolute best of hands.  We definitely felt secure in that knowledge and the care Ari had received so far.  We were given an appointment with Dr. Thiele for the following week and were told that we could take Ari home the next day!

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With all this new knowledge and the possibility of Ari having a genetic disorder that could affect him for the rest of his life, it was a relief to get home.  It was also difficult to NOT Google the disorder.  I read a lot of things about it, wanted to know as much as I could.  The prognosis was so varied as we were told.  So much depended on where the tubers grew.  TSC could be super-debilitating or have no real affect on lifestyle and development whatsoever.  It was a lot to wrap my head around and no solid answers were going to be available until all the tests were completed.

We now had to schedule the rest of the tests for Ari.  Dr. Thiele would use a Wood’s Lamp to look at Ari’s skin since this is another place that the tubers could appear.  The EKG and the renal ultrasound were scheduled to take place on the same day.  We wondered if this was to be our future…  trips to Boston with our baby boy and growing child for tests several times a year.  This is what we would have to do if the diagnosis was TSC.  We even touched upon moving back to Boston in our early – and even later – conversations.  It was a tough time.

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We had decided not to share any of the information about the genetic problem possibility with any of our family.  It could potentially impact more people than just us and we felt it was better to wait until we had more answers.  If Ari was proven to have it, it could have mutated and developed spontaneously, but it also could come from one of us.  If he tested positive through a genetic test, Ron and I would both be tested.  If one of us tested positive, Eli would have to be tested.  There was lots to talk about and more questions to be answered.

Photo Credit – All Photos: Eli Dagostino Photography

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New York Egg Cream Redux

by Sheryl Dagostino on May 9, 2013

Egg Cream

Sometimes, if you know one, you just need a New York Egg Cream.  If you aren’t familiar with one, there are actually no eggs involved.  If you need some real history or background, you can go here.  I know it as comfort and a nice hit of chocolate, dairy (or non-dairy) delight!  HINT:  if you’ve ever had an ice cream soda with chocolate flavored soda, this is the soda part without the ice cream!

Besides being delicious, egg creams are easy to make.  I’ve created the healthiest ever New York Egg Cream (or more like Sheryl’s Egg Cream) right at home.  You can use these same ingredients, but before you commit, I suggest you get online (or run out to one of the two on-island stores if you live near me!) to Not Your Sugar Mamas (NYSM) and order some Be Saucy!  You will not regret it.  It is a super food, raw, delicious chocolate sauce you can use for many things — like egg creams.  Or just dip some strawberries into it!  It is delicious and versatile and has made being gluten-free and refined-sugar-free an easier lifestyle change.  In fact, all of their products have made my new lifestyle a welcome and delicious change!  Don’t stop at Be Saucy – peruse their product line and look at their all-organic and superfood ingredients and I’ll bet you’ll see the special care they take in their products and company as I do!

And if you know me, I’m not a big agave user.  This is one of my few exceptions and treats — I also know that NYSM sources from sustainable and organic resources so I am confident that when I decide to indulge, it is okay on all levels!

Now let’s have some Egg Cream…

You need a tall eight-ten ounce glass and a straw if you are so inclined…

3 heaping tablespoons of Be Saucy
1/4 cup milk (organic raw milk is the best of course) – for dairy-free, use coconut milk!
1/2 cup (or more) plain seltzer
dollop of coconut cream (optional indulgence)

Technique is crucial for this – it is not a mix and drink affair!

1) Add the Be Saucy to the glass – it is okay if some of it is dripping down the inside of the glass because that is more authentic.
2) Add the milk.
3) Stir the Be Saucy and milk vigorously with a spoon until pretty much all combined and looking like the most chocolatey chocolate milk you’ve ever seen.
4) While stirring milk and Be Saucy at a medium pace, slowly begin pouring seltzer into the glass until about 1/3 away from top of glass.  IT WILL FOAM and MIGHT OVERFLOW and that is OKAY.  Just wipe the counter.

If you’ve gotten the technique right, there will be a little area of “foamy” egg cream at the top of your glass.  YES!  Now you can drink it — the challenge is to make it last.  Certainly adjust the amount of Be Saucy to your taste — I know I have!  Add coconut cream if you choose or enjoy as is.

Make this into an ice cream soda by adding a scoop of your favorite ice cream – don’t forget your spoon!  I can’t wait to break in my new ice cream maker, make some coconut milk ice cream, and make ice cream sodas!

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Coffee Cake – Gluten & Refined Sugar-Free

by Sheryl Dagostino on May 4, 2013

coffee cakeThis recipe has been lovingly adapted from The Nourishing Gourmet

Cake
2/3 cup honey or as little as 1/4 cup for less sweet (100% maple syrup will work as well)
1/4 cup butter, melted
4 eggs
1/2 cup almond or hemp milk
1/2 teaspoon vanilla
3/4 cup almond flour
3/4 cup sifted coconut flour
2 teaspoon baking powder
1/2 teaspoon sea salt

Streusel
1 cup chopped pecans
2 Tablespoon honey
3 Tablespoons raw coconut sugar
1/4 cup cold butter cut into small pieces
2 teaspoons cinnamon
1 teaspoon coconut flour

Set oven rack in center of oven and preheat to 350 degrees. Grease 8″×8″ baking pan with coconut oil or softened butter.

Whisk honey, butter, eggs and almond milk and vanilla in a bowl until well combined.

In a separate larger bowl, mix almond flour, sifted coconut flour, baking powder and sea salt.

Mix dry ingredients into wet ingredients. Stir until well combined.

Pour HALF of the cake batter into greased cake pan. Spread evenly over bottom of pan. Set aside.

Mix all of the streusel ingredients in a bowl until incorporated.

Distribute half of the streusel over the batter in the pan. Put the rest of the cake batter on streusel, spread evenly (this is most edone with clean hands).

Top with remaining streusel.

Bake for 35 minutes. Remove from oven when a toothpick inserted in middle of cake comes out clean.

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Mess.

by Sheryl Dagostino on May 3, 2013

photo

I look around.  My house is such a mess.

And when do I get to go through my closet and change over to my Spring/Summer clothes?  Actually, now that I think about it, do I really want to do that?  It will only reinforce all the clothes that don’t fit and have to be put aside “until they do” and take up space…

Will I ever truly be “clutter-free”?  EVER? 

Will there ever be one corner of my home that is not “unfinished” in some form or another?

Can’t I just go into debt and have a full-time housekeeper and cook?  And would that actually HELP?

I really don’t know the answers to any of these (albeit First World) problems.

I try to look around at the mess and be GRATEFUL.  Yes, grateful.  I have this mess.

It’s my mess (well, not really, but apparently it is mine to clean up).

It is a good mess.  It is thorough.  It is real.  It can hurt you. (trip on toys much?)  It has taken on its own identity:  MESS

MESS will overtake the whole house if you allow it.  Sometimes I just do…  I say “fuck it – have at me MESS.”  You can have the living room.  You can have the kitchen and the bedrooms and the bathroom too!  Just take them all.

Is this the way I look at myself, I wonder.  I do know that I’ll treat myself poorly when I am in a particularly “bad place”.   That’s what my husband likes to call it.  He’ll say “let’s not talk about this right now because you are in a really bad place.”  or he’ll remark “I can’t think about that now because I’m in a bad place.”)

Is my home a “bad place” when the mess is allowed to take over?  I don’t think so.  I have found myself to be quite full of joy and contentment when my house seems to reflect quite the opposite.  I might be treating MYSELF better at these times than my house.

Maybe it is just prioritizing.  Self-care is not inclusive of my house, is it?  Something has got to give…

There is certainly no mistaking that MESS is LIFE.  MESS needs us.  MESS knows that we LIVE here.  MESS is proof.

Do we actually need MESS?  Is it serving us somehow to have it?  Does it foster our “aliveness”?

The reality is that if the mess was gone, that would mean I cleaned it up.

It takes TIME to clean up MESS.  MESS is a time sucker.  Is it worth the time to clean up the mess if it will just be there all over again tomorrow or the next day or the next week?

We do it you know.  We keep cleaning up our messes and they only return to make us clean them up all over again.

MESS is alive.  MESS will not let us forget it.

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Avocado Brownies with Vanilla Buttercream Frosting

by Sheryl Dagostino on April 27, 2013

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I have embarked on my gluten-free, refined-sugar-free lifestyle.  Let’s not use the word diet because I certainly am NOT on a diet.  I am making it official a month and a half into it by beginning my journey in baking for my new lifestyle.  I LOVE baking.  Anyone who knows me KNOWS I love my cupcakes – and love to make them myself.  This is big step out of my own baking comfort zone and I am very pleased with the results.  The boys are very pleased as well.

Avocado Brownies

4 ounces unsweetened chocolate
1 Tablespoon of coconut oil (+ extra for greasing baking dish)
1 Tablespoon Artisana Cacao Coconut Butter (optional)
3 small ripe avocados (or 2 large)
1/2 cup honey
3 Tablespoons coconut sugar
1/4 cup unsweetened cocoa powder
1 Tablespoon vanilla
2 Tablespoons coconut flour
1 teaspoon baking soda
1/2 teaspoon sea salt
3 eggs

Melt chocolate over a double-burner with coconut oil and cacao coconut butter until fully melted.  Set aside to cool.

Preheat oven to 350 degrees.  Grease an 8 x 8 baking dish (or similar size) with coconut oil.

Remove “meat” from avocados, discarding pit and peel (you aren’t supposed to compost these, so just throw them away).  Place meat in a food processor and puree thoroughly until completely smooth – NO lumps.

In the bowl of an electric mixer, beat the honey and coconut sugar on medium high until combined and beginning to get fluffy.  Add the pureed avocado and all the remaining ingredients EXCEPT the eggs.  Beat together on medium high until really smooth and fluffy.  Add the eggs and continue to beat on medium for 2 minutes until incorporated.

Spoon the batter into the greased baking dish and spread evenly.

Bake on center rack in oven for 35 minutes or until a toothpick comes out clean.  And while they bake (or before), take out 1/3 cup of unsalted butter to soften for the frosting.  To speed up butter softening, I like to cut it into pieces or slices and place them on a plate on the counter top.  This will work much quicker than trying to allow an entire stick to soften.

Brownies should be refrigerated after cooling.

Vanilla Buttercream Frosting

1/3 cup unsalted butter
1 cup powdered coconut sugar*
1 teaspoon vanilla

*While your butter is softening, you have to make some magic.  I have not found any “powdered coconut sugar” on the market, but you can make your own!  I have a Vitamix, but if you have a decent blender, it should work in that too.  You could try a food processor, but not sure if the results will be the same.  A clean coffee grinder should work as well, but haven’t tried it myself.  Here’s how you do it:

1 cup coconut sugar
1 Tablespoon arrowroot powder

Place the coconut sugar and arrowroot powder in the Vitamix/blender.  Close with cover tightly.  Begin to blend at low speed, gradually increasing (slowly) until top speed.  It gets messy in there.  DO NOT open the container whatever you do (unless you want powdered coconut sugar all over your house).  It shouldn’t take more than a minute or two at the most.  Shut the machine off and let it sit for a few minutes until the “dust settles”.

Once your powdered sugar is ready – you are ready to make frosting…

Place the softened butter in an electric mixer and beat on medium high until smooth.  Add the powdered coconut sugar, a little bit at a time, turning the mixer off to add it and turning it on low to get it to begin to incorporate.  Once all the sugar is in, add the vanilla and beat on medium high for 4 minutes or more until mixture is fluffy and smooth.

The frosting can keep in a sealed container at room temperature for 5 days.  Refrigerate for longer keeping.  Since the brownies need to be refrigerated, you can “frost-as-you-eat” OR you can frost all of the brownies, place them in the refrigerator and just remove them for 20-30 minutes before serving to allow frosting to soften.

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Raw Banana Pudding with Walnuts

by Sheryl Dagostino on April 22, 2013

I’m experimenting with yummy desserts that have no refined sugars or gluten in them.  Can you guess why?

Well, I love dessert!

Dessert is just necessary sometimes and since I’ve been gluten-free and refined-sugar-free for over a month, I am finding new ways to create delicious, satisfying and healthy desserts for myself and my family.  That’s the ticket – if I can satisfy the big boys, I’m golden!

I am further inspired to experiment with raw foods.  We will be lucky come July when Stacy Stowers comes to live with us for a week while she guides us and teaches us all about raw, gluten-free and dairy-free eating.  I’ll share more about all of those things at another time, in another post, because right now it’s time for dessert!

banana pudding

This recipe makes 3 perfect servings. Adjust as needed for more. You really won’t want less…

1 can of organic whole coconut milk: open and scoop the thick coconut cream out and put in a glass container in the fridge for 1/2 hour or longer (it will harden a bit)
2 organic bananas
1 tablespoon organic maple syrup
1/4 teaspoon organic vanilla
1/4 teaspoon organic cinnamon
Handful of raw organic walnuts

Take coconut cream out of fridge and scoop into a bigger bowl. Mash one banana and add to coconut cream. Add maple syrup, vanilla, cinnamon. Mix with a spoon until all is combined and smooth and creamy.

Slice the 2nd banana into thin slices. Layer 4-5 slices of banana in bottom of dish, then a few walnuts. cover with some pudding. repeat. Add slice of banana & walnut on top. Consume immediately or leave out covered at room temperature for up to 1 hour. If you must refrigerate for several hours, let stand at room temperature for 30 minutes to soften before serving.

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Ari – part two

by Sheryl Dagostino on April 10, 2013

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Being Mama full-on in a hospital environment is pretty intense.  I was grateful that Ari was admitted to a private room (we weren’t so lucky on a subsequent visit).

One of the challenges was pumping every 3-4 hours around the clock.  It was crucial to keep up my schedule in order to get Ari the nourishment he needed, still his sole nourishment, and also keep up my supply, especially given the current situation.  I didn’t want anything in Ari’s relationship to feeding to change.  At that point in time, I was pumping more than Ari actually needed in in a 24 hour feeding period and was freezing the excess.  Ron and I knew that being at the hospital, it may not be possible to freeze and/or use all the breast milk I was pumping.  We knew about the possibility of donating milk, but not the details.  Ron went about and asked the nurses and was referred to a local milk bank.  It was not possible for me to donate at that time because of the stringent and thorough review process a donor has to go through.  The milk I was pumping at the hospital would be consumed by Ari there or brought home to freeze.

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I filed the information for the milk bank away for another time.  It remained on my mind because having an infant in the hospital really opened my eyes (and Ron’s too) to all the babies and families in need who were in similar and even worse circumstances.  Indeed we saw other parents and children during Ari’s stay on the pediatric floor at MGH.  It was heart-wrenching to see and hear some of the children.  And they were all so beautiful and brave.  I cried a lot while we were there.  Emotions were all on the surface already and empathy was a big one.  I would see a child in the little playroom with her parents.  I could see the children who couldn’t walk, the child with the bandage around and eye and his little head, hear the baby crying inconsolable in a room down the hall…  I wanted to help them all.  I poured all my energies and love where it needed to go – to Ari.

Ari was waking pretty much every 3 hours for a bottle at night at this point.  In the hospital, I would pump after I fed him.  I was pumping for 30+ minutes at a time, sometimes up to 45 minutes depending on how engorged I was.  I had to be diligent about staying on my schedule because I had experienced clogged ducts from being engorged for a bit too long – not something I wished to experience on top of everything else going on.  Usually, if we were at home, Ron would feed Ari during the night feedings while I pumped, but Ron was staying at the nearby hotel.  The nights at the hospital were just Ari and me.  Of course I had the nurses to call in for general help and I had to call them in to get Ari’s milk brought in and to give them any milk I pumped to be properly labelled and stored.  They had a special locked room specifically for breast milk storage and cleaning pumping equipment.  Ron was a saint and washed all the pumping equipment and bottles before he left me and when he came back in the morning.

During Ari’s first day, we met Ari’s wonderful pediatric neurologist Dr. Thibert (along with a constant slew of residents, pediatricians, students, and nurses!) and learned about how the EEG worked.  There was a little red button that we were informed to press when we witnessed Ari having one of his episodes.  Since the EEG was going to be hooked up for at least 24 hours, this would help alert the doctors and technicians who would review the scan to when an episode was happening and look closely at the read out at the time of the witnessed seizure.  We also learned about how to read the EEG ourselves.   I am quite a sponge, especially when it comes to knowing something for my child’s benefit!  When Dr. Thibert came into the room with about 7 residents, I listened and watched while the scan was viewed and explained.  I got it.  I could see the spikes and I knew that they were NOT normal.  This was not great knowledge to have when you see those spikes regularly on the scan over and over happening in clusters every couple of hours all day long.  It was crucial that we press the button ONLY when we saw the physical seizures happening with Ari and not press the button based on the spikes showing on the scan.

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Ari was also being videoed.  We had to turn the camera if we took him out of the bed so that he was always being monitored.  It took some interesting maneuvering to turn the camera to where I would sit with him, gingerly pick him up without disturbing all the coiled wires hooked up to his head or the wire to show his oxygen levels that was connected to one of his big toes!  I also had to pick up the “bag” that all the wires connected to, then sit down and rest Ari in my arms so that, again, I was not disturbing the wires or upsetting Ari, and THEN I had to be sure I could reach the bottle to actually feed him.  I was also aware of where in the room I sat to pump breast milk as I certainly didn’t want that “on-camera”, thank you very much!

It all took a lot of organization and planning – It was just non-stop with everything honestly.

Based on the schedule of feedings, pumping, the stress, and the uncomfortable pull out chair thing, I did not get much sleep during Ari’s hospital stay, but Ari slept wonderfully so I was grateful for that.  I know he felt safe with me right next to him and he always knew I was there.  I really wished for a queen size bed so that we could snuggle up together like we would for naps at home.  I wanted to be as close to him as possible.

The morning of Ari’s second day in the hospital, we anxiously awaited some word on what was next.  We were told that they wanted to do an MRI.  We were also told that it may not happen for a couple of days due to scheduling.   Ari would have to be put under general anesthesia for the procedure.  I was beside myself with worry.  I, myself had never undergone surgery or anything requiring general anesthesia.  What if Ari is allergic to it?  We had to sign all these papers relinquishing the hospital of all blame in case the worst happened.  It was risky and I was a mess.  Ari was so little!  What if they overdosed him?  What if he came out of it a different baby?  We really had no choice of course.  Tests needed to happen in order to get to the bottom of what was causing the seizures.  We were informed that the seizures themselves could do harm to Ari.  Developmentally, they could have already done damage.  The activity had to be halted and in order to stop it, to treat it, a cause needed to be found for correct and effective treatment.

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The talking, the discussing, the questions, endlessly over and over, the worrying, the sometimes needless bickering and the exhaustion was overwhelming.   Above all, we tried to keep Ari’s waking moments as happy and “normal” as possible.  We played with him, letting him kick (his favorite thing in the world to do) happily while we showed him the little toys we brought from home.  We made faces at him and cooed back to him.  Ari was so easy.  He definitely made it easier on all of us by being his sweet, gentle and content self.

The MRI was green-lighted for the next day.  Ari was not allowed to feed on breast milk after four hours before the test.  He could have Pedialyte for up to two hours before the MRI, but after that, nothing until the test was over.  They scheduled the test for 11am, but of course, as things always are delayed, they didn’t show up to bring Ari down until around 1pm.  He had done okay without the feeding and had fallen peacefully asleep in my arms.  I carried him down as they led us to the elevator, down into what seemed like the bowels of this giant hospital where the imaging equipment was.  We passed through the adult waiting area for imaging and were led into an anteroom area which was outside the recovery rooms to meet the anesthesiologist/doctor who would perform the MRI.  Ari slept innocently in my arms as Ron and I sat there and unfortunately had to witness an adult male being “revived” on a gurney just feet from us.  My waterworks began again – both in feeling for the poor man and fear for my baby.  Not a pleasant experience, especially when we are about to hand our sleeping infant over for a few hours.

eli.dag_AriDay20_2011_(00001 of 00004)An attendant came over and had me sign some paperwork which would allow me to go into the imaging room until Ari was put under.  The doctor explained the procedure to us, that Ari would be put under anesthesia and then the imaging would begin.  He suggested that I NOT come into the room, that it was disturbing because some of the noises Ari might make or movements while he was being put under.  I was crying, but at that moment, I knew the doctor was probably right and I decided not to go in.  The process would be a few hours and we could see Ari in recovery.  He would definitely be hungry so I would have a bottle ready.  I handed my sleeping Ari, sucking on his pacifier, over to the doctor gently.  It was one of the hardest things in the world to do.  Up to this point, I had always been able to be with Ari, at his side, through everything.  I now wouldn’t see him for hours for the first time since he was born.

Ron and I returned to Ari’s room on the pediatric floor to wait.  They had removed Ari’s bed in order to have it ready for him down in imaging to return him to the room.  Ron and I sat anxiously in that nearly empty room for hours.  We had my parents and Patrie, who were all wonderful in getting us anything we needed and also leaving us alone when they knew we need that as well.  It was a long, difficult wait.  I had to push thoughts of losing my baby out of my mind constantly, besides the worry about what they might find inside his little brain!  We knew from Dr. Thibert that it could be any number of things causing the seizures.  It could be a tumor.  It could be a genetic disorder.  It could be epilepsy.

Now, we just had to wait…

Photo Credit – All Photos: Eli Dagostino Photography

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Ari – part one of several

by Sheryl Dagostino on March 4, 2013

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Ari was a very easy newborn.  He slept consistently and reliably for about 1.5-2 hours after every feeding.  He would wake up happy, never the baby to wake up crying, have his milk, stare at whoever was close enough or just look around.  We would then swaddle him up and he would promptly go back to sleep.  The breastfeeding factor was NOT easy.  After trying and TRYING, it became clear that it was just not going to happen.  There are more details about that side of the story in They are just boobs…  Yes, we were exhausted parents like everyone is, but the reliability factor of Ari’s sleeping and feeding kept the guesswork out of the schedule and this eased our tiredness somewhat.  Ari was very content, trusting, easy-going and happy from the beginning.  We counted ourselves so lucky because he was not a big crier or even a spitter-upper (is that a term?).  He didn’t need a pacifier (at least not until months later!).  He drank his milk, cooed, slept, pooed (although he was on the weekly schedule for that), and snuggled happily in anyone’s arms.  To say he loved to be swaddled is an understatement.  He relished the swaddle!  He actually would begin to smile when lied down on his swaddle blankets, knowing what was to come.

I remember putting Ari in his swaddle and laying him down to sleep in his bassinet that was right next to my side of the bed – right up against the bed so I could just reach in and tap him or just rest my hand on him easily.  He loved his bassinet and I could swaddle him up and lay him down fully awake and walk away.  He would just go to sleep.  He didn’t like the canopy top over him though.  I saw early on how much he enjoyed being laid down in the middle of my bed and the sense of space above.  He would fuss with the canopy on, but was fine with it down.

A little after New Years, when Ari was a couple of months old, we began to notice some strange eye movements and physicality in him at times.  Ari’s eyes would jiggle back and forth and his little body would do a slight and slow reflex motion at the same time.  At first, since I was the one that initially noticed and questioned, I would talk to Ron about it being a reflux problem – maybe?  It happened a lot when Ari was having his bottle or when Ari was falling asleep.  Ari’s two month check up was a week away when we called the doctor’s office to give them a heads-up of what was going on.  They asked us to get the activity on video and bring the video to our appointment.

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Of course this is about the time I began doing my own research online.  You can imagine what I found out there (here?).  It was terrifying to say the least.  I saw many YouTube videos of babies having similar, if not the same, symptoms as Ari was having.  I read endless scientific papers on babies and children with the same described symptoms.  The diagnosis didn’t look promising.  These babies were having infantile spasms and I was convinced that was exactly what was happening with Ari.  Infantile spasms are seizures…

The worst time was about that time – when I knew what it could be, but didn’t have the solid answers.   I would watch him like a hawk for an hour, two hours or check back on him in the middle of the night to see if he was experiencing the “episodes” as we began to call them.  I began to recognize a slight intake of breath from Ari when it was happening.  I would pop up in bed and look in on him next to me and watch helplessly as he had repeated “episodes” over and over again.  I then realized that he would have them in his sleep!  His eyes would open and do the jiggle thing – once… twice… three times… sometimes as many as 15 times.  He would either just be back asleep after or wake up and be agitated and need some resettling.  It was just awful to watch.  Especially not having any real answers and feeling helpless as to what kind of damage these “episodes” could be causing Ari.  I tried to hold him when it was happening to see if I could snap him out of it.  It wasn’t possible to stop whatever was happening…  it was devastating.

Ron and I stayed up after feedings in the middle of the night, worried, talking about all the “what ifs?”.  We were beside ourselves with concern and could barely wait for Ari’s doctor appointment just a couple of days away.

eli.dag_AriPROShoot#2_2011_(00003 of 00006)By the time we showed up for Ari’s two month check-up, Dr. Goldfein could see the anxiousness on our faces.  He wasted no time and watched the video footage we brought in.  The first two clips were mild and it wasn’t until the third clip that he said “this one has gotten my attention.”  He immediately referred us to a pediatric neurologist on the Cape for an evaluation of Ari.  He reassured us gently not to worry – Ari would be okay.  Our appointment with the neurologist was scheduled for two weeks from our appointment which was not good enough for us.  We begged for Ari to be seen sooner and were able to get a shorter length appointment just a week later.

Our first off-island adventure with Ari was to go see the pediatric neurologist.  The added commitment of pumping breast milk in a car definitely contributed to the “adventure” aspect and the stress level couldn’t have been higher.   The doctor didn’t do anything special in his examination and the episodes that Ari was having did not occur at his office, which was our hope, so he could witness it firsthand.  We answered a lot of questions and showed our video clips.  We were sick with worry and could not focus on anything else but our baby Ari.  The neurologist scheduled an EEG at Falmouth Hospital several days after our appointment with him.

An EEG?  What’s going on?!

We made our second trip off-island with Ari for the EEG on a Monday.  It was a tedious time for the technician to attach over 30 electrodes to our baby’s head.  Ari was an incredible patient – better than I would have been!  We had to keep Ari awake most of the morning before the EEG so he would sleep during the actual test.  A challenging undertaking with a baby who actually likes to sleep regularly.  By the time he was all swaddled  and hooked up with electrodes, he was ready to go to sleep so timing was perfect.  I had to sit in the corner and pump milk while Ari slept and the test ran.  I remember the technician being concerned that the sound of my pump might disturb Ari’s sleep.  I assured her that the sound of the pump was as familiar as my heartbeat by this point in Ari’s life and he would probably sleep sounder because of it!  The technician was in the room with us, in the dark, and we could see the monitor screen.  We had no idea what we were looking at.  The technician would lean over and look at Ari very closely once in a while, but Ari was sleeping peacefully so we didn’t suspect anything was going on.  I didn’t see him visibly have any episodes during the EEG.

We were told that the neurologist wouldn’t read the results of the EEG until Thursday that week.  I received a call on Wednesday at around noon.  Ron had to be in Boston for a work conference for a few nights and he was there when I received the call at home.  I was just about to put Ari in for a nap and saw who was calling.  I put Ari on my bed and answered the phone.

eli.dag_AriDay20_2011_(00003 of 00004)The neurologist was very blunt.  He told me that Ari’s EEG was “disturbing” (yes, he used that exact word) and that Ari had to be admitted to Massachusetts General Hospital immediately.  I could barely breathe.  I tried to hold myself together as I explained we lived on an island and I knew that the earliest I could get Ari there (without Ron’s help since he was already in Boston!) was that night.  I didn’t even know how I was going to get through any of it.  I told the doctor to expect us to check in first thing the next morning.  I hung up the phone and basically lost it.  I was alone in the house with Ari who was kicking happily on my bed and I just cried.  I called my friend and neighbor Helen — I needed someone there with me and she was someone I could trust and knew what had been going on already.  Eli was at school.  Helen came over and held me, listened and helped with Ari as I frantically began to gather what we would need for Ari to be admitted in the hospital.  I had no idea how long they would have him there!  The doctor said he could be there for up to a week!  I just blindly began gathering things crying and saying “my baby. my baby. my baby.” over and over again.

I called my dear friend Patrie.  After hearing the situation, knowing that Ron was in Boston waiting for us, she offered to drive Ari, Eli and I all to Boston in our car.  She knew I was in no state to drive.  Eli came home from school to a house all a flurry in preparation to admit his baby brother to the hospital in Boston.  After getting packed up, making sure I had all of my pumping gear together for days of being away – this was our first ever overnight trip – all of Ari’s bottle accessories, clothing and blankets for him, some little toys, whatever I could put together for my own needs, casual clothing for Ron since he was now leaving the business conference he was attending, we headed to the boat.  Eli and Patrie had arranged our boat ticket so we could get off that late afternoon.

This was Ari’s longest car trip yet.  We did have to pull over off the highway once because he was not happy and needed to be held and fed.  I don’t blame the little guy.  It was a very stressful trip to say the least.  We had arranged to meet Ron at his hotel just outside the city and stay there for a night and then all head in to the hospital in the morning.  I had been in touch with my second cousin, Andy, who is a pediatrician west of Boston.  We had been emailing and talking on the phone about Ari’s symptoms since we noticed them and had been seeking advice.  Andy had arranged to come see us at the hotel later that night after work and talk to us about what we should expect at the hospital and explain how the system works – big hospital/big system, all things we were not really familiar with.  It was the first time we were seeing him in many years and it was his first meeting with Ari.  We were so grateful for his help and support at that time and I will never forget it — he had connections to the hospital and even called that evening to make sure Ari was expected in the morning in hopes of making the process a bit easier on us.

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The next morning, we had to go through a whole rigamarole of waiting in admissions and triage and paperwork…  about a million people saw us and asked the same questions over and over again.  Andy had warned us about this part of the process, explaining that MGH is a teaching hospital and so we would be seeing and talking to many people about Ari’s symptoms.  Although we arrived at MGH at 9am in the morning, Ari wasn’t assigned and settled into a room until around 2pm in the afternoon.  My parents made the trip up to Boston to meet us at the hospital and spend a night or two while we all tried to learn what was going on with our Ari.  Having them there was a huge support for all of us.  I felt like a lost little girl again, but I was completely and utterly depended upon by me little guy.  It was the most disjointed emotional place I think I’ve ever been in.

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Once Ari was checked into his room, things moved more swiftly.  He was hooked up to a more sophisticated EEG.  They were going to do a 24 hour EEG with video to see the activity both physically happening and also his brain scan readout.  Ari was an amazing trooper through all of this.  He seemed to enjoy all the different faces and wasn’t fearful of anything.  All the poking and prodding, the picking up and standing him on his feet – he was only 2 and a half months old!   It seemed that everyone who came in the room took his vitals!  He would be napping and be woken up for an examination.  We weren’t even there a whole day and it felt like a week already!  But Ari just smiled at the nurses and the doctors and residents.  He pretty much charmed anyone who came into his room!  Although I was so worried and anxious, I was so very proud and full of love for Ari as I watched the way he was taking all of this in stride – at only two and half months.

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Meanwhile, Eli and my dad share a similar trait.  They are both really NOT into hospitals or anything medical related.  I was so grateful to have them both there knowing how they felt.  Eli being there with his camera was pretty amazing.  It was such an intense time and I remember just snippets of moments – Patrie bringing me goodies from Whole Foods and sharing encouraging and supportive words of wisdom all along the way.  Dining with my mom in Ari’s room on Italian take-out while Ari slept and everyone else was out to dinner together.  Having another meal alone with Ron in the “parent’s room” down the hall while my parents sat with Ari, and getting interrupted because Ari was crying and needed me — then me running down the hall to just hold him and reassure him that I was there, that I wasn’t ever far away!

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I tried to learn from Ari’s young bravery, however hard it was, and reminded myself that he was the one going through all of the testing and he just needed his mama.

That was my place, first and foremost, now more than EVER – Mama.

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There is more to share and I will.  It has taken me over a year to get to the point of feeling fully comfortable sharing these events this way.  I will definitely be back to continue and get us here to the present.

This present life is a year+ different…

Photo Credit – All Photos: Eli Dagostino Photography

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