Tuesday, January 17, 2017

New site!

Hello my wonderful readers! New year, new blog!

Check it out HERE!

Friday, December 9, 2016

Daisy's First Holiday Season & Putting Gratitude Into Action

Daisy was delighted to discover her toes!
Hi everyone!

I am writing this from a little table in the Seattle airport after four (almost five!) days away from Nick and Daisy. This is the longest I’ve ever been apart from my girl and it has been so difficult. I don’t know how working mothers traveled without cell phones and FaceTime technology – I would’ve been a distracted, emotional basketcase in every meeting if I couldn’t see her face, talk and sing to her and watch videos on my cell phone on a loop. I am so grateful to modern technology and to my amazing in-laws, whose praises I cannot sing enough, and who have been in Philadelphia all week taking care of Daisy (and Nick) while I’ve been gone. My wonderful mother-in-law, Julie Anne, is so good about sending me daily photos, videos and little anecdotes about what she’s doing (this week it’s been sitting up, pattycake and having a glee attack while watching the local news).

While time apart from my family can be difficult, I feel fortunate to have the opportunities that I do in business - opportunities which didn’t exist for women, especially mothers, even twenty or thirty years ago. I love to travel and I am enjoying this very exciting time in my career, but when I am away from home, I am reminded just how lucky I am to have a life so rich and wonderful to come back to.
Sitting up (with a little assistance)

I want to use this platform today to talk a little bit about gratitude and putting gratitude into action. I have learned that it is one thing to recognize how lucky you are and quite another to use your gifts, good fortune and TIME to help others who have not been blessed with such a generous hand. I strongly believe that gratitude and action must go hand-in-hand and that the more we do for others, the happier we are.

As taboo as it is to talk about, the fellowship of AA has been instrumental in my life this year and a half and I believe the principles that form the 12 steps can be valuable to all of us, not just those of us in recovery. Certainly, no one sets out in life with the goal of someday qualifying themselves as a “member of AA” or a “recovering alcoholic” but I am very proud to say that I am in recovery and am active in AA because it means that I am in a constant state of gratitude and action. I have learned in the rooms of AA just how lucky I am, and, how important it is for me to share the message of hope with others by sponsoring other women who are trying to make their lives better.

I recently started working with a new sponsee who has lived through more horrific tragedies than any one person should ever endure. Despite the blow after blow she has been dealt, she has a kind heart and is so desperate to get well and have a second chance at life. At the end of working together, she hugs me so tightly and I walk away from the recovery house where she lives feeling on top of the world because I know I'm giving her hope. The neighborhood where she is staying is a rough one and it’s about thirty minutes away from my house. It’s not the most convenient place to get to and not necessarily a neighborhood where I would choose to spend my time, but, it is important for me to be there. Putting my gratitude into real action isn’t going to be easy, convenient or comfortable. It isn’t about me and what works for me. It’s about going out of my way for someone else. And it feels good. 
Daisy was the most fashionable baby in NYC

This holiday season, think about how you can help someone else and put your gratitude into action– even (or especially!) if it isn’t convenient or comfortable. I promise, it's the best therapy there is. I never feel better than I do after I've spent time working to help someone else!

Updates On Daisy
Daisy gets juicier and more spirited every day now, it seems. She can now hoist herself up into a sitting position and can keep herself up for the most part. Her head is still a bit big and heavy for the rest of her body to support so sometimes it wins out and she topples over. It never seems to phase her – she is just as smiley and happy laying sideways with her head stuck in the couch crease than she is anywhere else. 

We are working very hard on her physical strength with PT and OT every week. She hasn’t figured out too much about crawling yet. She is, seemingly, motivated to get places but for now, she lays on her belly and flails her arms and legs with great dissatisfaction. 

She has started really laughing but she is very selective with her laughs – she really makes us work for each one. If you could all see the things we do to get a rise out of her… The jumping, the dancing, the singing, the noise-making… But we live for that little chuckle. Especially when it’s continuous - there is nothing better in the world than making your baby burst into hysterical, uncontrollable giggles.

Daisy's first trip to Rockefeller Center!
 We invited my family to Philadelphia for Thanksgiving this year and my brother and Dad chose to join us. It was a nice, low-key holiday followed by a weekend in New York City, a treat from my Dad. We ate at the best restaurants, stayed in exciting Times Square, shopped and ate at the most amazing restaurants. It was so much fun to watch our little girl take in the bright lights, big buildings and crazy sounds of the city. She fought sleep with all her might – as if she knew she was somewhere special and didn’t want to miss a thing. She was only unhappy when we were in a taxi stuck at a red light – she seemed to love zooming around at breakneck speed, which is funny, because I loved being in a Big Apple cab as a little girl.

Picking out Daisy's first tree!
During Thanksgiving and in New York we gave Daisy little tastes of all the foods we were eating and she loved everything. She has already proven to be such an adventurous and tolerant eater – Nick and I are so thrilled with this. We really want to raise our kids to be foodies like we are, willing to try anything and always ordering the weirdest thing on the menu.

The following weekend, we went to our favorite place, Linvilla Orchards, to pick out our first Christmas tree with Miss Daisy. She, of course, had no idea what was going on, but I took a thousand photos and was on top of the world. This weekend we will decorate the tree as a family for the first time and I pretty much can’t think of anything better. Experiencing all of my favorite things for the first time with Daisy is such a joy. She is such a happy kid, it makes absolutely everything better and more fun.

We have recently gotten into a routine of taking baths together in our master soaking tub and Daisy is without a doubt a water   like her mom. I grew up spending every day of the summer at the beach and 90% of the day in the water so I can’t wait to teach Daisy how to bodysurf and boogie board and swim. Daisy splashes in the water with a giant smile on her face and doesn’t seem the least bit afraid of getting water in her eyes (or mouth – she’s always trying to eat the water, which we try to prevent ;).

My teeth aren't this white - I used an editing app & overdid it
That is all for now – my flight is boarding and I cannot get home fast enough. Hope everyone reading this is happy and healthy – we love you all so much and look forward to seeing as many of you as possible around the holidays!

Lots of love,

Emily

Saturday, November 19, 2016

Sitting Up, Traveling & Feeling Thankful

Hello friends and family!
Those eyes and that little smile... !

It has been far too long since I wrote last. The Sullivan Family has been very, very busy this fall - in the best way! 

I feel a tinge of disbelief as I type that Daisy will be seven months old tomorrow. They say that time flies when you’re having fun and now I truly understand why parents always seem to be talking about the speed at which things pass… I feel like just yesterday, the nurses at the Jefferson NICU were handing me this tiny, five pound, wrinkled, red little body for our first skin-to-skin session and now somehow today, she and I sat up on the couch facing each other laughing. She seems to grow and change from minute to minute - but I am loving each one of those minutes more than the last.

Daisy can officially sit up on her own - not perfectly straight but she’s getting there. She has made tremendous progress in a short time with physical therapy and we’re devoting lots of extra time to “working out” each day and she is getting so strong! She seems to edge toward crawling a bit more every day. She is currently in a phase I like to call “floor swimming” where she lays on her belly and flails her arms and legs for long stretches of time, seemingly with the expectation that if she flails hard enough, she will be propelled forward. Hey, physics wasn’t my strong suit so I totally get it.

Shopping Buddies
Socially, Daisy is right where she should be - she is an incredibly happy, interactive and alert baby. She always wants to be in the middle of the action - to see faces, hear sounds and be involved. She loves to ride in the bjorn facing me so she can see my face. She will smile through any activity for any length of time as long as she’s in my lap or sitting directly next to me. I can’t imagine a cuter sidekick!

Daisy has recently discovered her voice and is in the “testing” stage where she spends most of the day experimenting with the reach and volume of her voice. This has presented a bit of a challenge for me, particularly during the eight hours of the day where I work alongside her, on the phone about 40% of the time with my colleagues. Needless to say, I am finally, begrudgingly, looking into a part-time childcare arrangement.

Out & about in Saratoga with babies in tow!
We have had the opportunity to do some exploring as a family this fall and Daisy has been an excellent traveler. 

In late October, we visited Saratoga Springs, where I went to college, and spent the weekend with one of my best friends, Jess, her husband, Mike, and their new son Jack, who is just three days older than Daisy. We also got to spend time with Jess’ parents who are some of my favorite people on the planet. It was the absolute BEST weekend in every way. We laughed from the second we pulled into their driveway until the moment we waved goodbye. 

Jess is a teacher who specializes in the Montessori philosophy (I was Montessori educated as a child and am a BIG fan!) and I have learned so, so much about teaching from Jess over the years.  Now that we are both moms, I am so inspired by her parenting style and approach to teaching Jack. Each room in their house has a little station with different objects Jack can learn from. They don’t have a giant box overflowing with Made-In-China toys from Babies’R’Us and Target. Instead, he was playing with gourds from a farmers market, little bowls and leftover shipping materials and is learning shapes and weights and how household objects interact with each other. Jess is such a wonderful, devoted, creative and hands-on mother - everything in their home is simple and purposeful. Like me, Jess has always wanted to be a mom, so watching her in her maternal glory made me so, so, so happy. I feel so lucky that we get to share this journey together. I came away from Saratoga with a lot of new ideas and a renewed sense of purpose as we continue working hard with Daisy every day to overcome her challenges.

Beaming with pride!
Just after returning home, it was off on the road again - I flew to Boston to see my Dad presented with the National Housing & Rehabilitation Association 2016 Vision Award for his hugely impactful work in the affordable housing industry. My brother Freddy and I were both able to be there in person to celebrate our Dad which was so, so, so special. He has worked hard all his life to carve out this special niche business that helps those who need it and his hard work has paved the way for a bright future. It was pretty cool to take my “mom” hat off for a moment and just be a daughter, in awe of her Dad.

After less than 24 hours in Boston, I needed to be in Charleston, South Carolina for work so Nick and Daisy (and the two dogs) drove down to meet me, stopping to see family in Baltimore and friends in Durham along the way. We spent three days exploring sunny, friendly, delicious Charleston and have decided it’s the perfect place to retire. We fell in love with the slower pace of life, the history, the architecture and the food scene. We took our time coming back, stopping in Raleigh overnight to visit some of my college friends and grabbing lunch in Richmond, where I’d never been. It was an amazing mini-vacation for us all.


This winter has more travel in store - to New York City, Western Mass, Boston, Puerto Rico and a few other surprise destinations that will be revealed as part of Christmas gifts… I can’t wait to continue our adventures with Daisy! And see as many of all of you as possible around the holidays.

This Thanksgiving, we are double and triple counting our blessings - namely Daisy and the wonderful friends and family who have supported us and prayed for us along the way this year. We truly believe we are the luckiest parents in the world. 

Peace and love to all <3 

Tuesday, October 18, 2016

Good news from CHOP, Therapies Aplenty & Adventures Ahead!

Happiest baby in the world!
Hi friends and family!

It has been a busy – but wonderful – month here in the Sullivan household. Daisy met with a “special babies” doctor a few weeks back to evaluate her progress and status developmentally. She urged us to consider having a G tube surgically placed in Daisy’s stomach for feeding purposes as she was concerned the NG tube currently in her nose might deter her from eventually wanting to feed orally because it is uncomfortable and a bit of a nuisance. 

Nick and I had deep reservations of putting Daisy through another medical procedure – in particular a painful surgery that would leave a scar. We also believe strongly in following Daisy’s lead and the tube in her nose never seems to bother her. Further, she has shown us LOTS of interest in feeding orally – she is taking a bottle a few times a day and we have been giving her tastes of a different food each week and she LOVES the taste of real food! (See list of foods tried so far below)

At mom's birthday lunch at Terrain Cafe
So, given all this, Nick and I made an appointment with the GI team at CHOP to discuss the pro’s and con’s of G tube surgery. I am very happy to report that at our appointment yesterday, they saw no need for the procedure and agreed with our assessment that Daisy is doing just fine. They said as long as we are okay with the somewhat high maintenance nature of Daisy’s existing feeding regimen, she is displaying good progress toward eventually being able to eat solid food and they felt surgery was not necessary. We are THRILLED!

The special babies doctor also recommended physical therapy for Daisy. While the proud mom in me wants to resist this because I see every breakthrough and bit of progress and think she is endlessly advanced, the other part of my brain reminds me that extra therapy can never, ever hurt Daisy so we may as well accept and embrace all the services available to us. After all, our goal is to give Daisy every advantage and tool we possibly can in life.

One of our new favorite things to do is feed Daisy tiny tastes of our food every couple of days to see her reaction and gauge her interest in eating. We've also started introducing baby food. So far Daisy has tried the following:
The cutest pumpkin there ever was

  • Apple sauce (loved)
  • Strawberries (skeptical)
  • Root beer float (loved)
  • Vanilla soy "ice cream" (loved)
  • Carrot baby food (skeptical)
  • Hot sauce (skeptical but surprisingly went back for more)
  • Caesar salad dressing (not a fan)
  • Lemon (skeptical but went back for more)
  • Raspberry (loved)
  • Wild blueberry & apple baby food (loved)
Selfishly, the best part of this exercise is watching her cute face scrunch up and her lips purse and her eyes grow wide while she experiences each new flavor. Someday I will get a better blog platform so I can share videos of things like this with all of you. They are hysterical.

In other news, it feels like Daisy is growing longer, bigger, stronger, smarter and faster every day right before our eyes. She is so curious about the world around her and constantly testing the limits of things. In the last month she has transformed her gross and fine motor skills – she can now drag herself across the floor (not quite crawling yet, hasn’t figured out how to leverage her arms :), she can reach at items dangled above her and grab them in her hand, she can transfer things from one hand to the other, and she has learned how to blow bubbles with her own saliva and she spends a good portion of the day practicing just that (and thus drooling all over the front of her clothing :).

Daisy’s latest favorite things:
  • Piano toy (thanks Dad!)
  • Bath time
  • Changing outfits
  • Looking in the mirror
  • Riding in the stroller to the dog park listening to St Paul & the Broken Bones
  • Car rides
  • Hanging out in the nude
  • Being in mom’s arms
  • The time of day when Dad comes home from work
    Hanging with Dad (who always seems to be asleep!)
We are getting really excited for some travel in the next couple of weeks. At the end of October, we are traveling to Saratoga Springs, NY, where I went to college and where my best friend from college and her husband live with their son Jack who was born just three days before Daisy! We will be spending the weekend with them in their brand new home and Daisy and Jack will celebrate their first Halloween together (Jack is going to dress up as a carrot and Daisy is going to be a bunny!). I always love going back to Saratoga – it’s a beautiful town and filled with so many happy memories from college. I am really looking forward to making new memories there with Nick and Daisy and the Blake family!

The following weekend, the Sullivan family plans to adventure South. I will be in Charleston, SC for a work conference and Daisy and Nick (and the dogs!) are going to drive down and join me so we can explore the destination everyone seems to be talking about these days. We welcome all suggestions and hope to see as many friends as possible along the way there and back.

Stay tuned for updates from our travels soon - and thank you for all of your prayers and good wishes surrounding Daisy's evaluation at CHOP. We have the best cheerleaders in the WORLD!

Wednesday, September 28, 2016

Daisy Appears on a Medical School Panel, Apple Picking, Daisy's First Rock Concert, Solid Food & Motor Planning!

Hi everyone!

Right after we spoke at Jefferson Medical College
The first few weeks of fall have been full of firsts, adventures and exciting developmental growth for Miss Daisy. 

On Monday, September 19, Daisy, Nick and myself were invited to speak on a panel with Daisy's doctors, nurses and therapists from the NICU for a group of 200 first year Jefferson med students. The purpose of this class was to illustrate for the students what a successful discharge planning meeting might look like and how best to approach communication between the patient's primary caregivers outside of the hospital and those inside the hospital. Walking into an auditorium packed with white coats, we felt a bit intimidated, but it was such a treat to be reunited with Daisy's team and we were so excited to pass on what we could about what worked well. It was an amazing experience. 
A panoramic photo Nick took of the medical students we spoke to - look at all those white coats! Eek!
I didn't realize what an impact our family had made on the NICU staff - they obviously made an incredible impact on us but to hear how they were touched by our dedication to Daisy's care and our belief in her future was really special. We got to share many anecdotes about our two months working with the NICU and why our experience was so outstanding. Daisy was, of course, a HUGE hit. If even just a few of these students were inspired by what we shared, I will be immensely proud.

A little overdressed for 75 degrees...
This past weekend, we took Daisy apple picking for the first time at our favorite local farm, Linvilla Orchards. We love this place - they are open year-round  and they grow absolutely everything. We have been visiting since we first moved to Philadelphia with the intent of starting a special tradition even before our children were born. We visit at least once a season for pumpkins, to cut down our Christmas tree, to pick strawberries, blackberries and raspberries, and to pick apples in the fall. Daisy loved all of it. She adores being outside and she loved taking it all in from the baby bjorn - watching all the activity, breathing in the smell of fermenting fallen apples, feeling the breeze across her face... It all made her giggle and grin.

I made apple sauce with the apples we brought home and we have been feeding it to Daisy in this neat little thing called the Food Feeder which was designed for babies who are being introduced to solid food. She LOVES apple sauce and feeling the sensation of food on her tongue. It is such a delight to watch her experience food. So far she has tasted lemon, strawberry, apple, hot sauce and a root beer float. She liked all of it! 

Daisy, dressed like a rockstar
In addition to starting solid food, Daisy has been making huge progress with her motor skill development. She can now guide her pacifier into her mouth, she can grip her lamb toy with both hands and hold it up above her (Daisy's version of bench pressing :), she has figured out 75% of rolling over (still hasn't mastered removing her arm from underneath her body) and she can pass a ball from one hand to the other. Our Early Intervention therapist, Genevieve, thinks Daisy is a whiz kid. She visits with us once a week and works with Daisy on physical strength. Daisy gets a full body massage (tough life, huh?) and works on Tummy Time - specifically on "motor planning" which is the ability to conceive, plan and carry out a skilled, non-habitual motor act in the correct sequence from beginning to end. Her low muscle tone issues seem to have been completely resolved. She is constantly kicking her legs and waving her arms and building muscle. Basically, whenever she's awake she is working out. She did NOT get that gene from me. 

Daisy watching her godfather perform!
Finally, this week Daisy went to her first ROCK CONCERT! My brother Fred, Daisy's godfather, has been touring with SeepeopleS, his Portland, ME-based anti-genre cult alt-rock band, and they have been opening for a British psychedelic rock band called Kula Shaker. The two bands played the World Cafe Live in Philadelphia September 27th and Daisy was the youngest (and obviously cutest) member of the audience, rocking out in her leather jacket with fur collar and noise-canceling headphones the size of her head. She danced and reacted to the first three songs then fell asleep, somehow, for the rest of the evening. After SeepeopleS played, Freddy took us for a backstage tour where we got to see the green rooms, steal some delicious snacks, take a peek at the stage from behind-the-scenes and got to see where NPR records World Cafe Live. It was my first ever VIP tour and I've been around for 32 years. It was Daisy's first and she's.... five months old. She's already The Coolest Kid Ever.

Finally, I am pleased to report that Daisy's health continues to be at 100%. She is showing no signs of developmental delay at this point, she is already enjoying solid food, she sleeps through the night uninterrupted every single night, she is happy, strong, and growing at a fast pace. I thank God every night when I lay my head on my pillow for the miracle and gifts he has given our family. We are blessed beyond measure. 

Thursday, September 15, 2016

The 10 Baby Products We Couldn't Live Without

Hello folks!

I've been working for a while on a list of items I wish someone had told me I absolutely couldn't live without when having a baby. At the end of the day, taking care of a baby is instinctual and for every parent, the must-have items are probably a little different, but here are the things I would buy for every new mom I know if I could (listed in order, starting with most helpful):

Our sweet angel snuggled into the Moby wrap
1. Moby Wrap - This comfortable fabric wraps around mom or dad and helps cling baby to your body. Fabric is thick and elastic so it knots tightly so parents feel secure and enough give for baby to feel comfortable. We didn't bring a stroller on our 9-day vacation this summer and never needed it because we had the Moby (which by the way, can be neatly folded and takes up about as much space as an XL T-shirt)!

2. The Owlet Baby Monitor - The Owlet sock slips on Daisy's foot and monitors her oxygen level and heart rate throughout the night. If any of her levels should drop, the base stand immediately sounds an alert and alarms ring on both our mobile phone as well. We can sleep soundly knowing that if something goes wrong, we will know about it. It's not cheap (thanks, Dad!) but peace of mind? Worth every penny.

3. The Boppy Newborn Lounger - Daisy spends 90% of her day in this little guy. The indentation in the pillow keeps her tucked in a safe place where she can't easily wriggle or roll out. It's super comfortable and easy to wash. When we travel, Daisy sleeps beautifully in this.

4. Summer Infant Swaddle Me, or, "the Sleep Sack" (as I call it) - Daisy loves to wave her arms and legs around so at night, we swaddle her to help keep her calm and still. Tightly swaddling baby reminds them of the womb and helps them sleep well. Daisy was an EXPERT at wriggling out of her swaddle in the night but this is Daisy-proof. The strong velcro keeps her arms firmly at her sides so she can't pull her tubes out in the night.


5. The WubbaNub - This is a godsend. This keeps the pacifier in or close to Daisy's mouth so we don't have to sit by her side holding the pacifier in her mouth (which I did every day for the first four months of her life before this gift from the heavens descended upon me). Every family should have this.

6. The MamaRoo - This is like a replacement for an actual mom. It keeps baby gently rocking and moving when you can't. Not inexpensive (thanks, again, Dad!), the MamaRoo is the coolest piece of mom technology in the last few years - it's an electronic rocker with several different settings ("car", "tree swing", "kangaroo") at different speeds, various white noise and other sounds - or it can play music of your choice via bluetooth! You can even control it from your mobile phone. The NICU at Jefferson Hospital is chock-full of MamaRoos - the halls are buzzing with the vibration of these things and every baby has one. That says a lot!
The MamaRoo: A replacement for an actual mom.

7. The Nuby Back Seat Baby Mirror - This allows whoever is driving our car to be able to see Daisy's face while we're in the front seat and she's in the back. Now that car seats face away from the front of the car, it can be hard to know what baby is doing - this helps me know that she's either peacefully sleeping or looking out the sunny window. Thanks to my college friend Laura for this one!

8. Skip Hop Diaper Clutch (Portable Changing Station) - This tiny thing is the handiest and cutest little thing.  My good friend Kate sent us this a few weeks after Daisy was born and it goes EVERYWHERE with us. It's an alternative to a diaper bag. In reality, you don't always need to lug around every product under the sun for baby - sometimes you just need an extra diaper or two, some wipes and a clean, washable surface for baby's bum. This is your ticket.

9. Little Unicorn Hooded Towel - Daisy's absolute favorite thing in the universe is being rubbed down with a towel after the bath. It's no secret that she loves affection and being touched but I think she really loves the focused attention from mom and dad all at once.

10. The Prettiest Muslin Swaddle Blankets Ever - These are just really, really beautiful. We use swaddle blankets in a constant rotation so if you're always washing, drying, folding, swaddling, washing, drying folding, swaddling... You might as well do it with some beautiful muslin blankets! Little Unicorn makes the prettiest ones out there.

If you know anyone having a baby soon - I promise these gifts will make the mom in your life happy. Having a newborn is such a tremendous joy, but it can be exhausting (keeping baby happy) and tedious (keeping baby clean). These products have helped make every day just a little bit easier for me.

Finally, people have been asking me where I find Daisy's clothes. Here is a little list of my favorites:
"Call Me on My Shell" from Old Navy

Tuesday, September 13, 2016

An Update on Daisy

Before I go on with an update about our sweet Daisy, I should pause to acknowledge the overwhelming support I received for my last blog post. Over 3,000 people viewed that post and I received comments and private messages from over 150 people between this page and Facebook. I was so astounded and honored by the way my story was received – thank you, each and every one of you, for reading this blog, for reading my story without judgment and for understanding, accepting and encouraging the person I am becoming. You have made me feel brave and empowered to continue sharing my story with honesty and transparency. I am SO lucky to know the absolute very best people on the planet. I really believe that.

Now, onto Miss Daisy.

She continues to fill our life with joy and light. She has an incredibly positive demeanor – she is always smiling ear to ear and she has started giggling. She is working on sitting up – and while she isn’t very successful most of the time, she seems to enjoy toppling over and being propped up again and again.

This past weekend, she was baptized at St. Joseph’s Parish in Cockeysville, Maryland, where the Sullivan family has been worshipping for many years. It was an honor to meet so many people who have prayed for Daisy’s recovery and for our family over the past year and celebrate Daisy being welcomed into the community of God together. Daisy was a star – she didn’t cry or make one peep even during the pouring of the water over her head, she seemed just fascinated by all the new faces and sights and sounds.  Our younger brothers, Fred and Michael, are Daisy’s godparents and they did a beautiful job (aside from almost dropping her in a handoff on the altar – they might need a little practice ;). My parents flew in from Boston for the occasion and Nick’s parents hosted a beautiful luncheon afterward - there was so much love and kindness in the room, it was something I won’t soon forget.

We are still working closely with feeding and occupational therapy and Daisy is making some (small) progress in those areas. Daisy had made some progress with bottle and breastfeeding but then regressed quite a bit and seems to show some aversion to feeding orally. We are not giving up, though, and at the suggestion of her pediatrician, we have started to slowly and gently introduce rice cereal mixed with warm water on a spoon. So far Daisy hasn’t figured out what to do with what’s on her tongue so most of the food lands somewhere on her face around her mouth. I suppose this is the first step.

She is able to hold her head up without support from mom and dad now, for the most part. We still need to support her upper body or she will crumple in half but she is able to hold up her head and look from side to side which has become her favorite thing to do. Her head is constantly bopping and rotating -it’s quite funny.

In her favorite towel
Daisy’s Current Favorite Things

  • Tasting ice cream on her tongue
  • Dancing with Dad
  • Walks in the morning when there is a breeze
  • Fake coughing
  • Snuggling in Mom and Dad’s bed
  • Reading Iggy Peck the Architect and Rosie Revere the Engineer
  • Trying to eat her hands
  • Having her outfit changed
  • Being dried off after a bath – this is literally her favorite thing ever, ever, ever. She thinks towels are hysterical.
  • Looking at her dogs
  • Snoring
  • Poking herself in the eye

Next week, Nick and I are joining several of the NICU nurses, specialists and doctors that cared for Daisy on a panel for medical students at Thomas Jefferson University. We will present how we all worked together to coordinate care and make decisions for Daisy while she was in the NICU and after. We are so excited to be able to share our experience with future doctors, other families and for everyone to see the miracle baby that Daisy is today. She is living proof of the power of prayer and hope but also collaboration between doctors, nurses and families. 

That’s about it for now. Every single day with Daisy is better than the last. I find myself crying tears of happiness when her eyes light up or her mouth turns into a smile. I have never felt such joy in my heart and I am so thankful for her presence in our lives.