Cleft Stories

I woke up to a happier Emily this morning, although she’s still extremely swollen. The surgeon said it was going to go down way slower than we’d like it to, so I guess we’ll just have to be patient. Emily saw herself in the mirror yesterday and completely freaked out. She made us turn all the mirrors around (there are only a couple). That broke my heart.

But, the good news is that this morning she did wonderfully with food, drink and medicine. She ate four gogurts right out of the plastic pouch thingies (I told her to squirt them on her tongue and sort of slurp them into her mouth, but she figured out a way to have them sit on her bottom lip so she could squeeze the yogurt into her mouth. I think it helped a lot because even though gogurt is totally liquified, it made her feel as though she were eating. She even said, “I’m full, mommy!”

She also took her antibiotics without much complaint (I’ve been mixing it with about two tablespoons of white grape juice) and said she didn’t need Tylenol. I gave it to her anyway because I can’t quite believe that she’s not in pain after just three days – plus there’s the swelling. She actually rolled her eyes and drank it.

I also started using the Peridex today – that’s a prescription strength mouthwash which she needs to rinse out with twice a day in lieu of brushing her teeth. She’s not allowed to come near her mouth with a toothbrush at this point. The Peridex is minty and feels a lot like Listerine when you swish around with it, so naturally Emily hates it. It burns her mouth a little, particularly her tongue. I wish it came in cherry flavor or something to make things a bit easier for this kid. It’s important to use this to help prevent infection – I let it slide for a couple of days because she’s so extremely swollen I couldn’t even get into her mouth. It was even difficult today – not sure how much actually got in there. We’re using an eye dropper to put it in.

Emily is writing out Thank You cards right now using brand new art supplies and stickers. She is in great spirits and seems a lot like her normal self (I even had to tell her not to run, so I guess the hip’s feeling better). The only thing that’s still causing significant worry is the amount of swelling. I’d also love to see her eat a bit more, but she seems to be doing great with liquids.

Here are a few pictures from yesterday and this morning.

Emily had fun painting with watercolors (a gift from one of her friends).

This is a bag Emily decorated with fabric paint – I spent WAY too much on craft supplies yesterday, but it kept her and Ana busy.

This is a card Emily made for a friend this morning. Writing out Thank You cards is a fun project when you have tons of new stickers and markers to decorate with!

Dear Emily,

I’m glad you’re asleep. I’m glad this day is over. My heart broke a thousand times for you today. I know you are trying your best to understand that what you’re going through is necessary. I know you, in your sweet, brave way trust me completely, but I can see the doubt in your eyes. I can’t even imagine how hard this is for you. A 7-year-old shouldn’t wish like hell to be anyone but themselves.

I think today was just about the worst day ever. I think I told you a hundred times that the swelling will go down, and you’ll be able to eat more food next week, and the medicine is really important, even though you hate it. I know you think I’m mad that you cry when it’s time to take your medicine, or you won’t drink enough or you say you wish you were Ana, but I promise you that I’m not mad.

I want to explain that my voice shakes and I seem so frustrated because I’m just so sad and scared. I’m angry too, because why should you have to go through this? But I need to be strong for you, because I’m afraid if you knew how heartsick I am, having to watch you go through this, it will make you feel even worse. I’m writing this to you now so you’ll know how very much I love you.

So for now I guess I’ll tuck these thoughts away and maybe I’ll show them to you when you’re grown up, and all the pain of this awful day is dulled by time. It will be a day when you realize how beautiful you are, and you’ll be smiling at me with a full set of gorgeous teeth.

Maybe by then you’ll be ready to forgive me for not being able to make it all better. I wish like hell I could just make it all better!

So, I’m glad you’re fast asleep right now. And believe me when I say that I dearly wish you the sweetest dreams you’ve ever had. Good night, sweetie.

Love,
Mommy

Emily woke up early this morning and was extremely swollen. So much so that I freaked out a little (not in front of her or anything) and called the surgeon. She also had some blood on her lips and I wanted to make sure this was normal.

The surgeon called me back immediately (thank goodness) and said that the swelling was normal – and the second day after surgery was the worst in terms of swelling. The blood is likely from pooling blood in her cheek – which contributes to the swelling and the blood that’s been on her lips. He said the good news is that the more blood I see, the more the swelling will go down.

I am not posting any pictures of her until the swelling diminishes a little – it’s really THAT bad. Even the skin under her eyes is puffy and her face is completely unrecognizable as my little Emily. She’s talking well though (if a little muffled sounding) and I’ve gotten her to drink a bit of fluid – mostly chamomile tea with honey. She fights me when I try to give her anything heavy like Ensure.

We’re having trouble getting her to drink the antibiotic they gave us at the hospital because it’s very bitter. The surgeon said it was okay to mix it with some juice, so we’ll try that next. Also, at this point as I type this (about two hours after i gave her plain Tylenol) she’s much better than she was when she woke up. She just got up and walked over to our cat Basil, picked him up and took him back to the couch. I’ve also gotten some giggles out of her this morning – a sound that is pure music to my ears.

We made it to Manhattan at about 6 p.m. on Wednesday evening. We stayed in an apartment provided by the National Foundation for Facial Reconstruction which is an organization that helps families like ours afford care at NYU. If you’re wondering about what charity to donate money to this year – you can’t go wrong with the NFFR. They make it possible for Emily to go to NYU. Here is a direct link to their donation page.

Once we settled into the NFFR apartment (located in an NYU dorm building directly across from the hospital). We sought out some Japanese food for Emily’s last meal before surgery (and, really, her last solid meal for the entire summer).

Here she is enjoying some Teriyaki rice and she also really loves Teriyaki soup, which is good because she can only have fluids for the next week. More on that later.

We walked around the city after we ate and Emily posed in front of this little boutique. She’s my little fashion diva.

A bunch of wigs from a store called Ricky’s. Emily loved all the purple ones.

Here we are in the waiting room on the day surgery floor. They have a room just for kids, which is great. Emily was so good – she was happy and silly even though she hadn’t eaten since the night before (it’s about 11:30 a.m. when I took this picture).

Another shot in the NYU waiting room.

Here we are right before Emily went into the OR. I went in with her (thus the Michelin Man costume). They gave her something to make her relax, and BOY was she relaxed! She was happy up until the very moment she fell asleep and then they kicked me out. It was so hard to leave her.

The surgery took about three hours and Emily did great in the recovery room. I didn’t take any photos of her at this point because I wanted to respect her privacy (she was all wired up, looking drugged and bruised). She slept almost the entire time in recovery – we were in there for a couple of hours. When she finally woke up, she asked me when she’d be getting her surgery. She didn’t even know she was done! She was astounded when I told her.

We went down to the Pediatric floor around 7 p.m. and Emily had already had about 4 ounces of apple juice. She was on Tylenol with Codeine for the remainder of the evening, but she hated the taste so much that we switched her to plain Tylenol in the morning. She was discharged at 7 a.m.

Here she is in her wheelchair waiting to leave.

Dr. Grayson checked her surgical splint, said everything looked good and we went home. She slept in the car most of the way home. She’s extremely swollen at this point so I’m not going to post any pictures until her face looks better (it’s atrocious – I feel bad posting a picture of her in this condition).

Our biggest worry now is she hates the liquid diet and her stomach hurts on top of everything, likely due to the antibiotics she’s on. She has taken a few ounces of broth, some water and a sip of milk or ensure that we’ve threatened into her. Her grandmother came up with the idea of rewarding her with a quarter every time she finishes 3 oz. of fluid and that worked very well. So…bribery it is! I’ll update again tomorrow. For now, I’m happy to see she’s playing with her sister and seems in good spirits. We even had a visit from the cousins today and that really seemed to lift her spirits.

Thanks to all family and friends who have been there for us this past week. It has helped tremendously to have everyone’s love and support.

So we got to the city at about five pm or so today. The drive in was quick – almost no traffic. We bought a portable DVD player to make the car ride home easier (and also for while she’s in the hospital. We got Japanese food at a little hole in the wall on 3rd avenue, but the food was delicious. That will be her last solid meal for a while so I’m glad she liked it. We also learned that she loves the teriyaki soup broth, so we’ll seek that out when we get home.

After we ate we took a nice walk around the neighborhood and stopped in a cute accessory store. We bought Ana a little surprise here but I can’t say what it is because I know she’s reading the blog (hi Ana!)

We’re putting Emily to bed now. I’ll update again after she’s been taken iinto the OR tomorrow.

Well, we’re down to the last two days before surgery and everyone is really anxious. Ana is writing out a card for Emily right now (she’ll be staying with her grandmother and aunt while Emily is in the hospital). I downloaded a wordpress app for my phone and will try to keep the blog updated with Emily’s status while we’re away.

Emily woke up this morning at 7:30 a.m., came downstairs and had a “someone’s mad at me” expression on her face. She normally wakes up very happy, skippy and silly, so I asked her what was the matter. She said, “four more days, mommy.” She’s referring to the surgery.

BIG SIGH.

I tried to think of something to say to make her feel better, but for once I was completely out of ideas. So I just hugged her and told her I loved her and then I said, “hey, do you want to meet a little girl named Sophie?” Sophie’s mother, Sarah, commented on Emily’s blog a few days ago, and that’s how I found Sarah’s blog. Sophie had her bone graft surgery a few days ago and Sarah posted some pictures of Sophie from the day of surgery – I showed these pictures and read the post to Emily. Then I went through a few other blogs so Emily could see some more pictures of kids with clefts, including Rachel, who had her bone graft last year.

Then Emily wanted to look at pictures from HER blog, so that’s what we did next. She then announced that all the videos of her singing were “too old” so I’m in the process of converting and uploading a new video of Emily singing a Demi Lovato song which her singing teacher is working with her on.

So, thank you Sarah (Sophie’s mom) and Darcy (Rachel’s mom) and all the other parents out there who are sharing your kids’ stories. It really helped Emily (and me!) to know she’s not alone on this journey. We now have some great ideas for the day of surgery too, and have a bit more info on what to expect.

With all the visits that we’re making to NYU lately (weekly, at this point), it was inevitable that we’d get caught in really bad weather. This past Thursday there was some kind of monsoon-ish front that drowned out the NY State Thruway. At one point, we actually had to pull over because the rain was coming down so hard there was absolutely no visibility. When we got back on the road, it was a surreal scene.

This is a picture of the north bound Thruway somewhere near Nyack. Water was literally pouring out of the street (there’s a river somewhere over there so I’m guessing it had overflowed its banks or something). We were driving in a few inches of running water, but the water on the other side of the road was high enough to reach the doors of your average sedan.

Here’s another shot of the flooded road. Traffic was backed up for a mile or so on the north bound side and we also hit some traffic and ended up being 40 minutes late to Emily’s appointment.

NYU got us in fairly quickly though and Emily did great as usual. They took an impression of her upper teeth for the surgical splint (she’ll be fitted for the splint next Thursday). They also had to patch her retainer which has started to crack (she bites it). We met with the surgical nurse who talked to us about what to expect the morning of surgery and right after surgery. Emily even had some of her own questions – she wanted to know which hip they would take bone marrow from and how long it would hurt. She seemed so grown up! The nurse said that Emily could tell the surgeon which hip she preferred they use.

Here’s a shot of Emily in NYU’s indoor garden – we stopped there while we waited to speak with the surgical nurse. The garden is a nice tranquil space which has lots of beautiful plants and even some animals (parrots, bunnies, turtles and fish).