Today I left my house for the first time in weeks. I drove with the windows down, radio up, and took the long way to my high-risk doctor appointment. Mike hasn’t been to school and S. and I haven’t been to the office in two weeks.
I had to go to my appointment alone this time. I had to call from the parking lot to let them know I was there. Then I had to go in to hand a receptionist, who was wearing a mask and gloves, my credit card. I have to admit, for the first time ever, I hesitated when she handed me a pen to sign the receipt.
I returned to my car, alone, to wait for yet another call. Once I was called back into the empty office I was rushed to an exam room. I saw one person who asked me all the normal questions. When I asked if I could Facetime my husband during the sonogram it was a quick and firm no – it is their policy and protocol. But nothing about what is going on now is normal ‘protocol’.
Then I saw pictures of our beautiful Hannah. Our 1.5lb beauty had a button nose, strong heart and very active (I didn’t need a doctor to tell me that). She has no idea what is going on. When I was this pregnant with Mike Sandy Hook happened and I cried. Now, I am too tired and overwhelmed to cry.
After printing pictures, I waited for 10 minutes for my doctor, who was at her house, to review my scans. During those 10 minutes, I texted with S. about whether I should stop at Staples to get a headset for my upcoming teleconference (no, I shouldn’t). Then the same nurse who did my sonogram returned to report back what the doctor said, ending with, ‘we will see you in 4 weeks, but don’t stop at the desk. Someone will call you to make an appointment so we can get you out of here as quickly as possible’.
I know this is going to be an amazing story for Hannah when she is older, and all babies who are born during this pandemic. But I can’t help but grieve for our family who is missing out on so much. So many pictures will be missing from her baby book – S. at doctor’s appointments, a 3D sonogram, grandparents feeling her kick, being celebrated at a baby shower with cute clothes, maternity pictures we’ve been planning for weeks … this is our last baby. We won’t have this time again and based on the pregnancy groups I belong to, I am not alone in this emotion. And creating new memories with us quarantined in the house is important and we are trying AND doing our part to flatten the curve so when July rolls around we will have a positive delivery experience.
Since it’s Cleft Lip and Palate Awareness Week my sister-in-law Rachel asked to do a guest post about their journey and I was more than happy to give her the space to do so. I know from watching their journey for the past 7 months I have learned a TON and I hope you will too.
The morning of June 13th was the same as every other morning except we were excited to see our little baby on the big screen that day. It was time for her anatomy scan, where they look her from head to toe and tell us she is perfect and we, the proud, beaming parents, post the grainy black and white picture that most can’t translate into a baby. After all, we had made it past the dreaded first trimester with a healthy and active baby and had no reason to believe this day would be anything but fun!
Wrong.
I hopped up on the table, got all settled in and let my belly hang out as the tech plopped the warm goo on it. The baby looked great but …I noticed immediately her profile looked different than her big sister’s. I couldn’t figure out what was right below her nose. Despite that, I was not all that worried. This was my second pregnancy, and I was pretty good at reading sonograms. I assumed it was something else just in the way, something that was no big deal. Towards the end, I asked the technician what was under the baby’s nose.
Her response was, “I don’t know”.
Umm … what??
The correct response, or at least the one I was expecting, was that it was a non-issue, like the umbilical cord or something else just floating around, right?
Cue the panic. I started throwing questions at her faster than she can answer. The calm, cool, and collected mom disappeared and was quickly replaced by a much less calm, cool and collected Mama Bear. I need to know what was going on with our baby RIGHT NOW. “You will see the doctor in a few minutes and she should be able to answer these questions.” The OB was also not sure what was wrong with our baby, but was pretty confident it was not a cleft. And yet, she wanted a second opinion.
A few days later we were sent for a level 2 sonogram with a Maternal Fetal Medicine Specialist. There was entirely too much time in between appointments, and I sat and conjured up all sorts of horrible and scary things that could be wrong with our sweet baby. This was the baby that we waited for and never imagined would come as quickly as she did; the one we were head over heels in love with – our second rainbow baby. This is not the way things are supposed to go. And this was not fair. I was sick with worry and questions but had no answers. What if this baby, the one we begged God for, wasn’t going to be able to stay? What if people were mean and didn’t accept her differences? And the big one, what if I was not strong enough to handle all that may be yet to come? I had no doubt in my mind that this little girl was a warrior but I worried that I was not the warrior momma she needed.
The specialist was able to confirm almost immediately our little girl had “a cleft lip with possible palate involvement” (cleft palates are almost impossible to diagnose in utero). At first, we were relieved. That was the least scary of the options since it is just a cosmetic fix, right?
Nope. Wrong again.
While it is definitely a “doable diagnosis” and in our case not life threatening, it is not a simple fix. It does not stop with cosmetic surgery on a lip. It means a lot of major surgeries on a very little person, and all the other health risks that can be associated with a cleft. If it is an isolated cleft they can have a range of issues from speech, hearing, and feeding issues. If the cleft is caused from a syndrome, there is an entirely new range of possible health issues. Also, there is a strong possibility children with clefts can pass it on to their children. Our Marcie has a 50% chance of having her own cleft cutie.
You might be wondering where my husband is in all this. He was/is my rock. I cried many tears over dinner those first few weeks, and he just kept loving me and assuring me that everything would be okay – that this was a non-issue, no big deal, something we could definitely handle. SPOILER ALERT: He was right. This WAS doable, we could DEFINITELY handle this and everything IS just fine.
Over the next few weeks, we researched until I am pretty sure we had read everything published on clefts. Google images were terrifying but we couldn’t stop looking at them because we needed to know what to expect.
We met with Dr. Richard Reddett and Clinic Coordinator, Kim Seifert at Johns Hopkins Hospital and we knew instantly we had found our people. We left that appointment with more peace in our hearts than I ever thought possible. We felt like we were part of an unstoppable team, and we were not wrong. They calmed all our fears and worries and assured us they would be with us every step of the way.
Besides the cleft, the remainder of my pregnancy and delivery were normal and uneventful. Our beautiful Marcie arrived late one October night with a bilateral cleft lip and palate, and she was perfection. Our hearts soared and we were instantly in love. All of our worries faded the moment we met her. Mom, Dad and Big Sister Mollie were over the moon with our brand new addition.
While her first six months of life have not been uneventful, things could have been much worse. We discovered at her two-week check-up that she had not gained one ounce since delivery. We were immediately admitted to the hospital for testing and observation. The doctors did numerous tests and thankfully, found she was perfectly normal and the solution was nothing major.
Over the next few weeks we monitored her closely, we played with the calorie count and nipple size in her bottle (Dr. Brown’s Specialty Feeding System) and slowly but surely our efforts started paying off. She started regaining her adorable chubby baby look and we all did a happy dance.
www.apphotographymd.com
I do not say this lightly – our pediatrician and cleft team have been our saving grace during our less than graceful times. I was in constant contact with them who, God bless them, always answered me no matter what. They calmed my nerves when I felt like the world was falling down around us and stuck with us, cheering us on.
Surgery time line and details differ from every cleft team/surgeon but this general timeline is pretty common. Our team does lip repair in two stages vs. using a pre-surgical device .
Marcie underwent her first surgery, stage 1 lip repair, aka lip adhesion at 3 months old. The purpose of this surgery is to prepare and stretch the soft tissue of the lip for the final lip repair a few months later.
www.apphotographymd.com
www.apphotographymd.com
www.apphotographymd.com
The second surgery is the final stage lip repair where they undo the work they did during the lip adhesion, remove any extra tissue and close it up. At 6 months old, Marcie has completed her lip repair with simply amazing results.
Next is palate repair, a pretty intense surgery where they move muscle and tissue around her mouth. This will take place in a few months for us. Then she will have some cosmetic work on her bottom lip a few months after that. Since her gum line is affected, she will most likely require bone grafts before the age of 10. As far as we know, this is the bulk of her surgeries but honestly, I haven’t asked beyond that so don’t quote me.
Truth be told, every blog I read prior to giving birth said I would miss her cleft smile once it was gone. I wondered how true that was. Now I can assure you, it is 100% true. I miss her cleft smile everyday but I am also so happy for her and her forever smile. Only a few select people get to have three perfectly amazing smiles in their first 6 months. She has recovered beautifully and as of this week is finally sleeping through the night again (FYI – anesthesia wreaks havoc on a baby’s sleep patterns).
If you just learned about your baby’s cleft and are freaking out, take a deep breath. Take it from me and the rest of us Cleft Mommies, it’s not always easy but it is going to be okay and you will definitely adore your sweet baby. You will be their biggest advocate, and you are so much stronger than you feel right now.
My two pieces of advice for new cleft parents:
Choose your pediatrician and cleft team wisely. You will not only need their skilled hands but their full support and calm spirits.
Get off Google Images and join some support groups with real life parents.
“I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.” Psalm 139:14
If you want to learn more about clefts here are some of my favorite sites.
It’s funny how this blog has evolved from sharing my infertility story to my pregnancy story to my momma story. Yet as the years have gone by I’ve shared some funny moments, some product reviews and letters to Mikey, but not very much about me. Let’s face it. At the end of the day I am too tired to write about me, but that needs to change. Starting now.
So a few weeks ago I went to my OBGYN to talk about starting the process to have Weisman 2.0 (I need a better name). Since Mike was a Shady Grove baby, I figured the process would be about the same. This was my 3rd visit with this doctor and I was lukewarm. She took my blood pressure and it was high, very high, and has been for the last few months. She was pretty dismissive and said the next step is to lose weight, get the blood pressure under control and come back in 3 months. And since it was the day before Valentine’s Day she felt the need to end the appointment with, ‘and try to avoid all the Valentine’s candy’!
No.
So, I made an appointment with my nurse practitioner who I adore to help me get it together. What I wanted was some immediate action items or goals. GYN left me with so many questions about diet and nutrition and as someone who already obsesses about food in one way or another, it wasn’t motivational. My NP really knew how to help, not only by putting me on a medication, but some goals:
Eliminating one thing each week from my diet (chocolate, fast food, dessert, whatever my ‘downfall’ is). The first two weeks I decided to scrap fast food.
Add 20 minutes of activity a day. Thanks to my FitBit, this should be easy to track. It will most likely be walking and I am going to strive to do some water aerobics.
Write down what I eat. I’ve done this 1000 times before and it makes sense. How should I know how many calories I should be eating when I don’t know what I am currently eating? Spoiler alert, more than I should.
Drop 5lbs before my monthly follow up. I’m not going to share my weight here. And not because I am ashamed of it, but because it doesn’t matter. This isn’t about hitting a magic number, it’s about getting healthier, and that is tied to my weight, then that is the goal. I think 5lbs is totally manageable for the first month. That appointment was on the 23rd and I am already down 1.5 without making many changes just yet.
So that’s where I am now – where my focus is. And blogging more. But don’t worry, this isn’t going to morph into a ‘fat to fit’ or ‘weight loss journey’ or ‘transformation’ blog. You don’t need that and neither do I.
PS – that picture above was from this past weekend when the weather was unseasonably AMAZING and we took Mikey to a new playground. Normally I would throw on some sweatpants, tshirt and sports bra – but it is time I put on a real bra and actual clothes. It’s easy to look at that picture and see my wrinkly shirt or pasty legs, but instead I am remembering how much fun it was watching my boys interact, Mike go down the slide dozens of times laughing and what a great morning it was. #babysteps
It’s funny how quickly life changes and you have no choice but to embrace the change and adapt. When S. was diagnosed with Hypertrophic cardiomyopathy (HCM) last year, we had to do just that. And since he had that experience and is almost on the other side of his recovery, February takes on a new meaning since it is Heart Healthy Month!
Since I’ve mentioned HCM a few times here I thought I would celebrate Heart Healthy Month by sharing some information about the disease.
HCM is a genetic disease that affects 1 in 500 people.
It is characterized by the thickening of the heart muscle (usually the one that separates the ventricles) blocking air intake causing the heart to work harder.
HCM is the leading cause of sudden cardiac death in young adults.
Most people with HCM have no symptoms and experience no significant problems. For others, it can cause shortness of breath on exertion, dizziness, fainting, fatigue, and chest pain.
For an accurate diagnosis, a physical examination, chest x-ray, electrocardiogram and/or Echocardiography is needed.
Treatment can vary depending on the patient – S. is on a beta blocker for the rest of his life, has a defibrillator to regulate his heart rate and had surgery (Myectomy) to ‘shave’ down his heart muscle (which won’t grow back).
It is sometimes present at birth, but it most commonly develops in early adulthood. Since it is genetic, there is a 50/50 chance a child will ‘inherit’ it from their parent. Mike will be checked by his pediatrician yearly until adolescent which is when he will go to a cardiologist yearly for checkups.
Life post surgery with HCM for S. will be pretty normal, he just needs to watch his diet and exercise – like everyone does!
If you are interested in learning more about HCM or other heart diseases, visit the American Heart Association
I’ve talked about it before, but about a year ago, S. was diagnosed with Hypertrophic Cardiomyopathy (HCM) and after dozens of doctor’s appointments, hours spent online reading and discussing his options, he had open heart surgery and a pacemaker implanted mid-September at Johns Hopkins. I could go on and on about that experience, but the real memory is how our family and friends from near and far rallied to do whatever (and I do mean whatever) we needed while we were in the hospital (just over a week) and beyond.
If someone you know is dealing with an illness or might be spending time in the hospital you want to help right? Of course you do. But what CAN you do to help that requires little of the family but makes a big impact? Here are some suggestions from someone who has been there.
{Notes} Quite possibly the easiest (and cheapest of all). It’s important that the patient and their support team knows people are thinking about them and praying for them. As a caregiver I received countless Facebook and text messages from friends and even acquaintances. My favorite messages included funny memes. It showed that someone was thinking about us at a time that felt very lonely (I am 100% I was the youngest spouse on the cardiac ICU) and someone was taking time to find something they thought would make me laugh.
{Care Packages} Before S’s surgery we got two care packages, one from a long time friend with a bunch of fun goodies like headphones, slinkies and disguise glasses. The other package came from a friend who I met through my Momma and have yet to meet in person. She sent things to keep S and I entertained in the hospital and some fun stuff for Mike while we were away. This is just another great reminder that people were thinking about us and taking care of some of the things we might have forgotten (like pens and Post-It notes for the hospital).
{Services} Dealing with an illness for such a long time puts a lot of other things on the backburner like keeping the house clean. S’s Aunt offered to book a housecleaning service right before his surgery and it was amazing. We found a great company ThinkMaids who did an amazing job top to bottom. But services don’t always have to be done by someone else. My Aunt graciously went to Harris Teeter and picked up and delivered the groceries I ordered online. Helping out comes in many sizes and price ranges – find out what the family needs and jump in!
{Food} Food is probably the easiest thing to do to help families who are dealing with an illness. S.’s grandparents and coworkers sent a beautiful fruit basket which was SO nice, especially after eating cafeteria food for a week. His cousin reached out before and after about us ordering dinner from our favorite take-out place and letting them pay for it. If it’s one thing we have learned the past year it is to take people up on their offer to help, so we sent Debi our order and happily answered the door when our food came. Grubhub recently started selling e-gift cards making it easier for people to send takeout food without asking for the details. Just remember if you are helping out with food – it should be pre-made or easily made without much clean up. And keep it basic. Now is not the time to try a new Yugoslavian dish that was handed down for generations.
{Self care} While it was easy for me not to make S’s surgery ‘all about me’, it definitely was a challenge at time to remember to take care of myself. My dear friend Miranda was kind enough to send me a giftcard to my favorite spa, Swan Cove. I waited until we got home and settled for a few weeks then happily skipped to the spa for a much needed massage. Sometimes the family needs gentle reminders that they need to be taken care of too. Thankfully I have friends (and one of S’s nurses I will forever be grateful for) who reminded me.
We are so thankful for all our friends and family who made it a priority to think about us and reach out during the surgery and recovery.
It’s been a hectic few months around the W household. If you don’t follow me on Facebook, the latest hurdle is that S. was diagnosed with Hypertrophic Cardiomyopathy, or in layman’s terms – an enlarged heart. I won’t bore you with details, but it looks like he is going in for open heart surgery in a few months. It’s been a whirlwind of doctor’s appointments, medication changes and muddling through scary, annoying symptoms.
When I shared the news on Facebook I had a lot of supportive comments about my own ‘self-care’. Then a few weeks later the term came up again on an Facebook group for women I am active with (I do leave the house, I promise). One person said, as a mom of multiples, as part of her ‘self-care’ she goes on a solo vacation for a week. A WEEK! At that point I had to figure out what ‘self-care’ is all about, because apparently I am doing it wrong. And for the record, going away for a week wouldn’t make me feel good – I would miss my family! And where is the line between self-care and selfishness?
I asked some friends what ‘self-care’ meant to them and found some helpful sites online (this is my favorite, it makes self-care seem realistic). My favorite ‘definition’ is this from a fellow Mom: “Being able to take time to still be me, without husband, cats, or child. To not be defined by others but be challenged to define myself. To have time to better myself, and therefore have more to give to the beings that depend on me.” Here’s what some others said:
“Letting the my kids watch TV while I have my first cup of coffee”
“Basically it just means putting my mental well being first when I need it. I hope this will make me a more refreshed, happy, mommy and will also teach my kids the importance of self care in their own lives. My hubby’s self-care involves playing baseball with his buddies two nights a week. It’s a huge release for him and he’s a much happier person when he gets that time.”
“For me, that means eating when I’m hungry, so I can make food for the kids too. Taking a nap at rest time, so I can play later. Chatting with mommy friends during play dates and ignoring the kids for a while, so I can interact with them again.”
“Yoga gives me peace of mind to tackle whatever the week can bring. And wine…wine helps.”
“I make it a point to workout at least 30 minutes a day, 7 days a week. Often times, Matt and I will be in our home “gym” after B goes to bed.”
“Monthly massages! I also started doing some simple pen and ink watercolors to help relax and de-stress. I’m also planning to take a day off work to be at home by myself.”
I loved all these ideas.I like the idea of having things that keep me Jackie and rejuvenate me to be a better wife, mom, employee and person. It made me think about what my own self-care routines are currently and what they could be.
{Daily stretching routine} A yoga mat at work and an office with a door helps.
{An uninterrupted nightly bath with a book} Just remember, just because you start it doesn’t mean you have to finish it. Life is too short for crappy books.
{Color} Lately it’s been coloring as a time to quiet my mind and be creative. I’ve been using Colourifique Gel Pens and working my way through an Inspirational Coloring Book. I love the practice of picking a color scheme and the repetition of coloring.
{Magazine Subscriptions} I love celebrity gossip and getting my Us Weekly each week is a treat. Sometimes it’s hard to justify the expensive subscription, but Zulily and Groupon usually have a good deal a few times a year.
{Getting it Out} – When I need a creative outlet, or feel strongly about something, my blog is the first place I turn. It lets me focus on me and perhaps inspire someone in the process.
What does self-care mean to you?
Oh, if you didn’t notice, this is a review of some products. Don’t worry – it’s my honest opinion and I wouldn’t recommend anything I didn’t believe in. And no one can afford to buy my positive review.
The lunch struggle is real ya’ll. How many days in a row can I eat yogurt, a banana, turkey and cheese (sans bread) and a random ‘healthy’ snack?
The other challenge is my new job. I’ve been here a month and so far I really really love it. And I am BUSY. Most of the time I am running around so much, so I am so focused, I forget lunch. Next thing I know I am in a meeting where I realize I am hangrey or someone brings their own lunch and eats it DURING the meeting (FYI – this is never okay).
I’ll be honest, I am not a soup person, but when Progresso asked me to check out their new Soup Bistro Cups, I was game. I wasn’t expecting much, but I went in with an open mind. Guess what? I’m all in. They are convenient, easy to make and filling. Plus, you can make them in a mug and drink them during a meeting and no one has to know it is something other than coffee.
All you have to do is open the packet into a mug, drop the K-Cup into a Keurig brewer (even those annoying 2.0 ones take these Bistro Cups), stir it up and in mere minutes, your lunch is ready.
I tried the Tomato Parmesan, but they also have Broccoli & Cheese and Creamy Southwestern which are both ready for my lunchbox next week.
If you are in the Northeast USA and want to try them don’t forget to download a $2 off coupon.
Running? There is nowhere I need to be that quickly.
If I am running, you better run too because something is chasing me.
I am too overweight to run.
I’ll run, run to Dunkin Donuts real quick in my car.
What do you THINK about when you run? It seems so boring.
“Run fast for your mother, run fast for your father Run for your children, for your sisters and brothers Leave all your love and your longing behind You can’t carry it with you if you want to survive … “
You never know when you might want to try something that at one time seemed so ridiculous. Thanks for hosting my first virtual 5K Fit, Fab and Lean!
I’ve seen so much hype around subscription boxes lately, I even tried RocksBox a few months ago and loved getting mail. So when my Momma and Sister-in-Law started raving about HelloFresh, I was cautiously interested. Here’s how it works:
Each week I log into my account and chose 3 meals out of the 5 they are offering. All the ingredients are surprisingly fresh as the name would lead you to believe. To be honest, the meals are not what I would normally pick if I was looking through a cookbook, but that’s half the fun. Did you know I like Tilapia? Me neither! It also guarantees that my family is eating 3 healthy meals a week – which as a family with working parents is a huge win.
On Friday, when I chose my meals to be delivered, I come home to a well packed box with 3 bags. Each bag contains the measured ingredients for each meal and a recipe card with pictures and detailed instructions. When I am ready to make a meal, I just pull out the recipe and bag and get started!
Each dish can be prepared in about 30 minutes and is more than enough for 2 people, and you can upgrade to 4 people if your family is bigger or you are having guests. Meat-free house? No biggie! They have veggie boxes too. The food is also kid friendly and Mikey is at the perfect age to instill a love of vegetables.
It’s really nice to know that I have everything I need to make a meal. While I do my best meal planning and shopping, it was inevitable that I would go to make chicken for dinner and be out of chicken. Everything I need is right there from HelloFresh (but stock up on butter, oil and oddball utensils like a garlic press and zester). Here’s some of the meals we’ve had:
Parmesan Crusted Chicken with Tangy Balsamic Potato Salad
Pan-Roasted Salmon with Mustard-Butter Bean Salad
Roasted Pork Chops with Onion Gravy & Rosemary Mashed Potatoes
Did I mention that each week is $69 and you are not locked in? Each week I am able to see what the menu is either opt in or opt out. I love not committing based on our tastes, schedule and budget.
The only downside is you still actually have to make the meal. But if you HAVE to make dinner (and Child Protective Services likes to know kids are eating), HelloFresh is the easiest and healthiest option. Want to try HelloFresh? Use this link to get $40 off your first box. I bet you couldn’t buy ingredients for 3 fresh, healthy meals for $29.
I signed up and after my first week, I told HelloFresh I was going to do a review, so they gave me a free week to try. They can’t afford to pay me for a good review, so I gave them an honest one.
It’s funny how sometimes things just come together in my mind. I’ve been listening to a lot of what I like to call ‘Mall Punk’ music lately. It’s a lot of what I listened to in college: Good Charlotte, New Found Glory, The Ataris and Blink 182. Real deep stuff there, let me tell you. Yesterday I heard a song I remember well – Lifeline by Angels and Airwaves (Mark Hoppus’ side project). The lyrics, obviously about a romantic relationship, don’t really mean much to being a new parent, but the term lifeline really resonated with me.
Days later while watching the news everyone was buzzing about the Momma who drove her children into the waves convinced they were possessed. Now, more than ever, this horrifies me. I won’t go into the details here, but if you aren’t familiar with the story you can see more here. I kept thinking … where was her lifeline?
Who was noticing her Facebook updates? Who checked in with her during her pregnancy? Who saw she was struggling being pregnant with 3 kids? I’m not blaming her friends or family for what COULD have been a horrible tragedy. For those of us who are parents we know how hard and lonely and disorienting it can be the first few weeks or even going through pregnancy.
Look, I get that some people with mental illnesses are not being treated, or getting help or even that they aren’t sure they even HAVE a mental illness. The mom in the van is a very extreme example. But regardless – we need to be a lifeline.
Having this blog and being so open about infertility, my pregnancy and being a new momma has introduced me to a lot of friends of friends and me reconnect with old friends and even acquaintances. In fact, when Mike was just a few days old and I was struggling with breastfeeding, I reached out to my Facebook Mom’s Group and an old coworker (I mean, we worked together in 1998ish) of mine who is also a member, sent me a long note about her experience and gave me a lot of reassurance and support. And while I had a lot of other support, she was my lifeline. That person who told me I wasn’t the only one who struggled and that someone else ‘got it’. That experience has stayed with me and I am paying it forward.
Please keep an eye on your fellow parents and parents to be. You could be the lifeline that makes a difference.
