What’s Next?

I’ve been a little MIA… we have been super busy enjoying some first Holidays celebrations and preparation. We have also had a lot of follow up appointments. Two and a half months post-op Patrick is doing so well, and we are so grateful for how he is healing.

Patrick had so much fun in Buffalo making cookies!

I recently shared that Patrick’s cardiologist saw him and we learned that his VSD, the small hole in his heart, has closed. When Patrick was born and we learned that he had a heart defect, I was terrified. I didn’t expect to learn anything about his heart, and I worried about what this meant in terms of complications for the surgeries, and his life. I worried about things like; would he be able to play sports, would he need heart surgeries?

We learned that the VSD would show symptoms while eating, causing sweating and difficulty breathing. His doctor believed based on the size of Patrick’s VSD, that it would not show symptoms, and that it may eventually close completely. We prayed that it would, that he wouldn’t have to experience the added struggles. At our pre-op appointment in September they cleared him for surgery without any additional measures necessary; the VSD was getting smaller and they were so happy with how he was doing.

While the expectation was that the VSD might close, when we got the final clearance, the absolute relief, and joy was overwhelming. I was holding Patrick, hugging him to my chest and I just kept crying. We love his cardiologist, but to learn we can take him off of our list of concerns, no more visits necessary; it was such amazing news! I could still cry of joy thinking about it.

His cardiologist made him a balloon animal to celebrate!

We also met with his cleft team last week and scheduled Patrick’s next surgery for April.  I have mentioned and spoken to people about this surgery and they’re surprised or confused.. “Another surgery so soon? He looks amazing though.” This surgery will repair what you can’t see, the cleft of his palate. While Patrick looks absolutely incredible, the cleft of the palate is a structural defect, one that makes it impossible to create true suction. Until his palate is repaired he would not be capable of successfully using a traditional bottle, sippy cup, or straw.

Just like the first surgery, we have prep to begin for the second. The biggest piece of prep for us is getting Patrick to drink from an open cup. You will start to see us posting pictures and maybe videos with his cup, and I know the first reaction will be “So Soon?!” It is incredibly early for a baby to begin working with an open cup, most children would start working on a milestone like this around 14-18 months old. However, after Patrick’s surgery he won’t be able to suck for 4 weeks, so the bottle will go away again, this time for good.

After his lip repair, we weren’t able to use a bottle and instead we fed Patrick mostly through a syringe and a special bottle called a tender care feeder. Both were super annoying and he hated them. The goal for this second surgery is that he is weened from the bottle completely and successfully drinks from an open cup. Our surgeon and speech therapy team have talked to us about how important this is, babies who are successful with this have a much easier time with recovery and fewer days in the hospital! We’re very motivated and so far Patrick likes his cup. He goes through the motions of drinking from the cup. We’re working on actually swallowing, I get so excited when he does!

Patrick with his Reflo Cup

We are so beyond grateful for a few months where we can enjoy a little break. Most of our medical team has cleared us for 2 months, which means January and February will be slow months for appointments and I have never been more excited about the idea of the pajama days! Since Patrick was born we have had an average of 2-3 appointments per week. Some weeks we might only have 1, but others we would have an appointment every day. Thinking of 2 months free is almost inconceivable. Best Christmas present we could have received.


Mama Drama

I am a member of an online support group for moms with children born with cleft. The group is much larger than that though, it consists of mothers, but also fathers, grandparents and of course individuals born with cleft themselves. The group’s only rule “Be Kind.”

My mom actually found the group and shared it with me not long after I received the news Patrick would be born with a cleft. Initially the group felt both a bit overwhelming even scary, and yet comforting and informative. There were days early on, I had to force myself not to go on, it was too difficult and I was too emotional. Other days I would scour the group with intense curiosity and a sense of community- we weren’t alone.

Our first sonogram, showing Patrick’s cleft.

The group on a whole I would describe as supportive, open, and accepting. Members geographic locations are diverse scanning all regions of the United States, and many regions of the world. With this diversity comes a large range in quality and access of care, insurance struggles, and saddest of all, local community acceptance of their children. I have heard stories that break my heart and others that warm me. Overall, I am grateful to witness the general warmth these parents receive when they come to the group for advice, support, and overall, a safe place to vent.

It came as shock to me you’ll understand when 9 months after joining this group, I log into Facebook to see a firestorm of drama unfolding on the page this morning. Someone had posted what I would describe as a rude, trying to start shit, post. She asked “why do so many people call their kids clefties?” (A term a number of people use to describe their cleft affected children. It’s a slang for the longer term cleft cuties” ) It bothered her, and she thought we should all accept our kids for more than the way they were born.

Personally, I don’t use the term. I get it, I don’t hate it, I think it can be cute the way people use it, but I don’t. The way the mom said it bothered me though. And as you can imagine, it realllllly bothered a lot of other people. Now the comments were HUGE! I started to read some, obviously sucked into the vortex of this drama unfolding online. I mean lets be real, this was car crash level, you wanted to look away, it wasn’t right to stare, but you just couldn’t!

There were so many comments I didn’t read all of them, but many were nasty, on both sides -defending the post and agreeing we needed to stop using the term. Others bashing her for not being accepting. (ironic when we harass someone nastily for not accepting us, while not accepting them.)

The post was taken down, and the admins all made a post reminding us of our only rule in the group “Be Kind”. A lot of comments continued, apparently there was a comment I didn’t read that really went below the belt. YIKES, I really wish I had seen it. (so wrong, I know!)

I tease, but watching this unfold in a place I truly believed to be one of compassionate and accepting parents reminds me of just how low we can go when we believe someone disagrees with the way we parent,  the way we get through a day, the way we choose to survive raising tiny humans.

The thing is, we will never all do things the same way. We don’t think the same things, and we haven’t walked the same path as each other. I am the youngest of 4 children, all of us parents ourselves now. All four of us have chosen to parent our kids so differently. Imagine now, we grew up in the same home. We, as a larger community come into parenthood with different experiences and perspectives that shape what we believe is the best way forward.

My siblings!

Organic foods vs non? Breastfed vs bottle? Purees vs Baby led weaning? Cry it out vs Rock them to sleep? Private school vs public? Working mom vs Stay at Home? Tough love? Help with homework?

We are never going to do things exactly like our friends or family, or neighbors, or kid’s best friend’s parents. That’s not how this works. There is no one size fits all parent, and the choices we make, or actively don’t make, are part of the journey to surviving being a parent.

I would have told you at 23, I knew exactly the kind of parent I was going to be. I would never let my kids sleep in bed with me, I would breast feed all them until they were at least a year old, and tv or screen time should be seriously limited!

Guess what? My baby has been bottle fed formula, slept in bed with me for 3 months, and we play cartoon nursey rhymes every day! HA!

Life. It happens, and not always the way we expect. But I believe with all my heart that all of us make choices every day that we ultimately believe is in the best interest of our kids.

Those nursery rhymes for my 5.5 month old? Maybe not the best for Patrick, but they keep him quiet for a little while, which is good for me. Good for me is good for him.

Let’s be nicer to each other. Let’s talk nicer to each other. Let’s stop talking behind each other’s back!

These moms in my group who call their kids clefties? They say it in the most endearing and loving way. They love their kids, and find the term loving and adorable. They don’t believe it’s a bad thing. They’re raising their kids to embrace who they are in all ways.

The moms who hate it? They are working with a different mindset. They believe giving them a nickname of their birth defect would then define them this way. They are working on showing their kids that they are more than just how you were born.

Both of these kinds of parents are right, because they love their kids! You will inevitably agree with one of these two things. Just don’t hate on someone when you learn that they think differently.

Let’s agree to support each other, even when we don’t agree. Let’s agree that we will always believe moms, and parents are making each decision with the intention of doing what is best for their kids, and their family.

My cute baby this morning, because look at that smile!

This is it

The last two days are exactly why I started this blog. So here I am, Patrick is finally napping and I am at my computer to vent, or share, or commiserate. If I lack all logical grammar and thinking you’ll have to forgive me!!

Yesterday, Wednesday, Patrick had a regularly scheduled appointment to follow up with ENT. He had tubes placed in his ears at the time of his lip and nose repair to help drain excess fluid he had in his ears. We had an appointment to follow up and make sure everything was looking good.

Bracing ourselves. Note my shirt #goforit

On Monday I had called to follow up with his dentist to see when they wanted to see us on Tuesday. We had an appointment with them the week before to get mold for an obturator. (A device that is placed in the roof of his mouth that helps create a hard surface. It looks like a pair of dentures without the teeth.) When we had gotten that mold last week  we were told he was going to need to get a second mold done since his mouth had grown more than the dentist had expected. We were supposed to be seen this Tuesday, but the office hadn’t called to give us a time. When I called on Monday they informed me he didn’t have appointments available for Tuesday. SIGH. We really needed our obturator back. (We had to be without the obturator for at least 4 weeks post-surgery.)


Patrick’s 1st and 2nd obturator side by side. (Today he received his 3rd!)

The dentist that takes care of Patrick is one of my favorite providers we have, and that is a tall order to fill. He is sweet and super caring, he has been going above and beyond from day 1. So, after I hang up with the office, he texts me! He is so sorry about Tuesday- his office manager has left for another job opportunity and not been replaced yet, he is been super busy and now without his right hand. BUT he can squeeze us in Wednesday at 11am.

This is a horrible time for us, but knowing his schedule and that we really need this done, we take it!

Just break this down with me. The team that takes care of Patrick is a division of Stony Brook Hospital here in Long Island. They all have offices either across from the hospital, or about 5-10 minutes east of the hospital. We live exactly 27 minutes from the hospital without traffic, and 20 minutes from the main offices. We see Dentistry at 11, and ENT (10 minutes away) at 1. Our appointment with dental is typically about 30-40 minutes. YIKES!

End result? We spent the day at Stony Brook.

We left our house at 10:30, saw dentistry, Dr. Larsen is the best, but getting a mold of your mouth is annoying for anyone, and a bit traumatic for babies. Patrick gags and screams, and gags more, while they shove a tray full of clay into his mouth until it hardens and then they pull it out ever so gently so as not to disrupt the perfect mold of his little mouth. Keep in mind this time (for the second time) Patrick is 5 weeks post op from a major surgery on his lip. I imagine it’s not the most comfortable for him.

We leave dentistry around noon, with the plan to return tomorrow to pick up our new obturator that Dr. Larsen is making overnight for us! (Did I mention how much we love him?) Patrick is exhausted and hungry! I feed him in the back of my car, and since his reflux has really been acting up, he is supposed to sit upright for 30 minutes after eating. I don’t feel like we really have 30 minutes to sit, but we do for about 15. I get him back into his seat, much to his dis-like and we start our short drive to see ENT.

Always bring friends, they make everything better!

Patrick has now been awake since 9am and is extra tired from the fight getting his mold. He falls asleep in about 2 minutes. I drive around as long as I can so he can get a few minutes of sleep. Unfortunately as soon as I get him out of the car he will wake up. He sleeps a total of about 15 minutes before we have to walk in to our next appointment.

The doctor is running late but then we’re seen – drama free here! And we get ourselves back in the car around 2pm. He falls asleep again about 10 minutes into our 20 minute drive, giving him another 10 minute mini nap. We get home, he is up and about, and starving again.

Days like yesterday are so difficult for us, and impossible for me emotionally and mentally. I feel extreme guilt for exposing him to a schedule like that. I work so hard to keep only 1 appointment per day, but some weeks, it just isn’t possible. We need to see these doctors and they have very full schedules. When they take the mold in his mouth and I hold his arms down, I could cry that he has to experience this. I keep thinking it will get easier, but it just doesn’t

I should say, he is a such a trooper! I mean, he is exhausted and for all intents and purposes, sleep deprived, but when the pretty brunette nurse walks in the room, he goes full flirt mode, giving those dreamy shy eyes and heart melting smile.  He knows how cute he is, and plays it up!

We both got home yesterday completely exhausted. He finally went down for a nap around 4:30, and I finally look around my house to the mess I left behind in my rush to get out this morning, I have laundry in the dryer that really needs to be folded. It’s 4:30, and should really figure out what we’re having for dinner. Instead I called Shaun and got him to bring home tacos. I mean I deserved it!! I leave the laundry, and try to at least straighten up the kitchen.

Dr. Larsen! He even takes selfies with us !

Unfortunately a sleep deprived day where our routine is really off also means a horrible night of sleep.  So today, when we head back to the dentist for the final fitting of our new obturator, I know it’s not quite time to get back on track. We had another mini nap on the way home, and fought hard to get back down for a much needed nap.

I have to force myself at the end of stretches like these to find a way, somehow to see the light here. So at the end of this rant let me say this: Patrick’s new obturator fits beautifully. He ate like a champ when we got home and I am feeling incredibly hopeful that it’s going to make a difference for us. He is napping now, which leaves me with hope for a happy afternoon, and very best of all- tomorrow we are appointment free!! Can anyone say pajama day?!?!

Let’s Get Real

So many have reached out to me about how grateful and interested they have been to follow in our journey with our son Patrick. Sharing our journey was a decision that felt natural and yet complicated. I constantly want to share my beautiful, perfect, and wonderful son with the whole world, I always would have. I also really want people to understand this “thing” that makes my son unique. This thing that I knew nothing about less than a year ago.

Our 3D ultrasounds were the best!

Shaun and I talked at length about how to first share our news publicly. I’ll never forget, one evening, we were discussing making a post for facebook, I had tears in my eyes, emotional over sharing Patrick’s cleft and finding out how people would react. Shaun interrupted me and said rather sternly “My son is not a pity party”. It took me back a minute, but I knew the second he said it, that he was right.  How we felt about this and how I shared it with everyone would affect how people understood and embraced it. I didn’t want my son to be a pity party, I did not want to nurture an environment where my son would have people feel sorry for him, but rather where he would grow to be strong and confident because of who he is, not just how he was born.

This simple comment has shaped how I have worked on sharing our journey. It gave me a new perspective. I had been sitting with the idea of the things that wouldn’t be “normal” and I WAS feeling bad about it. I am grateful for the time before Patrick was born when I could be sad, and I could mourn the loss of the picture I had in my mind of what it would be like to have my first child. I allowed myself the natural ebb and flow of emotions and I believe it was important for me to feel that natural reaction as it came. I never allowed myself to stay there long, I would tell myself, “You can cry and be sad for an hour, then you pull yourself together and know how much you have to be grateful for”.  I changed the amount of time based on how sad I was, sometimes 20 minutes, sometimes a whole day.

Our first real snuggle

The truth is, the reality is very different than the picture I had in my mind, but it’s no longer something I feel sad about. It is something that is very hard, and more challenging than I ever expected, but Shaun, Patrick and I, we aren’t sad, we didn’t lose anything, not even close! My son is such a joy, he smiles and laughs all day, he loves to move, and flirts with every brunette he lands those baby blue eyes on. I love him more than I thought possible, and while we have had some hurdles, I know that its only strengthening the bond we share.

That smile !

Now that we can be clear about this ultimate love and incredible bond we share… I should note that I realize in my ultimate desire to be positive and paint a picture of strength and the show the joy we still experience everyday, that I may be painting a false image.

That’s what we do on social media, right? We show the beauty and we paint the picture we want people to see. We put filters on to make ourselves look flawless, we smile and pose for pictures in a restaurant and then look down at our phones. This generation of social media has created an impressive machine to share our lives. You know what stinks most about that? So many of us believe we know what happens in someone else’s home because we let each other in, but only with what we think they want to see.

I hear so often how strong I am, and how impressive it is the way I am handling everything we have going on. I’m grateful for these compliments and so appreciative of the love and support from everyone. But I should be honest, most days… we really are a mess. He cries, I cry, he doesn’t sleep, I don’t sleep, he struggles to enjoy eating and that breaks my heart. His reflux makes the laundry almost unmanageable, and has made getting him to gain weight an added challenge. You have seen the heart melting smile, and I have showed you the joy he brings everyday, the light that gets me through.

My snuggle bug

I still don’t want you to feel sorry for us, the truth is that being a mom is hard, it is exhausting, confusing, overwhelming, and isolating. I have spoken to so many young moms who are fighting their own unique battles and feeling the same way I am. Becoming a mom is the thing I looked forward to most in my life. I know I am not alone in that. I also know I am not alone when I say, some days I feel defeated, and lost, I feel like I’m making all the wrong choices, like I can’t get it right.

I am starting this blog as a mom who wants to provide a platform to be real about our life. We have a lot of unique and regular milestones I will continue to be interested in sharing. I hope this blog might find another woman waiting for the birth of her child who will be born with a cleft so she can know her feelings are real and natural and healthy and that it will be okay. I hope this blog might find a mom of a newborn confused and overwhelmed, feeling like everyone else around them seems to be more of a natural. I hope this blog might find other moms of young children who know and remember all too well what it’s like. I hope this blog can become a better tool for our friends and our family to continue to follow in our journey.

Please return to find more in depth posts where I will get real about some of the most common questions I get asked!

“What was the hospital and delivery like? Was it different than a “regular” baby delivery?”

“How many doctor appointments do you really have?”

“Breastfeeding, and our journey through feeding”

“Surgery day and surviving that first big hurdle of that recovery.”

“What comes next?”