Sandy

A LOT has happened since Evan’s last fill!! We started hearing on Friday that we needed to start preparing for Hurricane Sandy, which had the potential to be a historically disastrous storm and would undoubtedly hit the eastern seaboard from NC to ME. I am obsessed with the weather and absolutely missed my calling to be a meteorologist and was tracking this storm since Friday evening. The European Centre Medium Range Forecast (EURO) model accurately forecasted Sandy to hit NJ 8 days prior to landfall. That same model predicted Snowmaggedon and Hurricane Irene, previous storms that idled most of the northeast. The storm was twice the size of Texas and if it were a country, it would have been the 20th largest in the world. Jeff and I follow the Feds so when they are off, we are closed. Luckily I work in a government building so red tape = work from home.

Anyway, we were (or I was) tracking this storm all weekend and we heard DC was going to get hit with sustained winds of 50-60mph for about 24 hours with gusts of 80+ starting late Monday into Monday evening. The Feds closed Monday and Tues and we ensured we had the essentials – diapers and baby food! My how things change with a baby. We were all set for the storm and due to the forest with massive trees behind us, we decided to sleep in the basement Monday night to be safe. We ended up losing power at 9:15pm and it got cold QUICK. Evan was in his pack-and-play in the basement, but woke up around midnight for whatever reason. I think he was confused and to make matters 10x worse, our house alarm started going off. Despite having NO power, and oh yeah, this alarm has never been activated sine we moved in May 2011! No idea how that even happened, but Evan was then wide awake. It literally sounded like a fog horn going off for five minutes straight. Jeff scrambled with a flashlight to try to disarm the alarm, but ended up cutting the wire because we had no idea how this thing was hooked up and connected. Evan ended up sleeping on the air mattress with me, and Jeff was on the couch. It was just SO COLD. My toes were numb and his nose was frozen. I felt terrible for him. We then woke up around 2am (best guess) to our Fios box beeping. I guess after losing power, the battery remains intact for a few hours and the beeping lets us know it is about to die. So once again, with a flashlight, Jeff dissembled the box so we could TRY to get some sleep. Evan was up a few times and I soothed him by feeding him. I remember thinking this kid must be frozen and warm milk sounds good.

We were up for the day around 8, and I decided to run to McDonalds for coffee (an absolute necessity). Our power was still off, and before I took off, Jeff lit a fire to keep everyone warm. The basement dipped to 66 degrees (felt like 50), the main floor was 64 and the upstairs was 62. Heat rises?? Anyway, we quickly got the basement to 74 degrees but didn’t have a ton of firewood. I go to McDonalds (and noticed all street lights worked, everyone seemed to have power but us) and the drive through line was insane. I stuck it out, only to deflate when the server prefaced her greeting by stating “cash only”. I demolished my purse but came up short. Worst part was, I had to sit through the remainder of the line as there was no other way to leave. I decided to go to the ATM in the 7-11 next door, then physically go INSIDE the McDonalds to get coffee and breakfast because at this point I was famished. I walk into McDonalds and the preface this time was “no coffee”. YGTBSM. I decided to get us a hot breakfast, then go BACK to 7-11 for coffee. One hour later, I was home.

I still have a decent stash of frozen milk aka liquid gold (100+ ounces), so our main concern was to salvage it. We had no clue when power would be restored, so we decided to pack up a bag for Evan, load a cooler with the milk and tons of ice we made in preparation for the storm, and head to Jeff’s brothers house in Fairfax. We also got to see his nieces which was an added bonus. We left the house at 12:15 and stayed at Johnny’s for a few hours. Jeff checked his VM and realized our neighbors called MINUTES after we left to tell us power had been restored as they saw us take off. Ugh! It was fine though, it was nice to see the family, but I wish we could have forgone the hassle.

Ever since our power has been restored, I have been watching the news and looking at pictures online of the devastation in NJ and NY. My family came over to this country and settled on Long Island in areas where the storm massacred communities. I can’t hold back tears when I watch or read the stories from mothers who lost their children, or people who cannot reach their families or friends. Jeff tells me every night to turn it off but I feel soooo helpless and really wish there was something I could do to help. It definitely makes you put things into perspective (McDonalds story = NBD) and make you soooo grateful for what you have. I sometimes question why we have to go through this whole medical process with Evan, but I usually remind myself that we have one of the happiest kids in the world, he is so loving, full of smiles and laughter, EXTREMELY healthy, and suddenly this roadblock isn’t such a big deal.

On that note, we are back to normal in the Gill household, and will do our 5th saline fill tonight. We are almost half way there with 7 weeks until surgery. Can’t come fast enough. Evan has been extremely healthy this whole process, knock on wood he stays this way. We haven’t experienced any other major setbacks and hope for smooth sailing until December!




What is this!?!




Storm remnants




Staying warm by the fire








Why aren't my legs moving?!?!

Fill #4

We did our fourth fill on Friday and as usual, Evan was awesome! His Lola and Lolo came over to distract him and once again, he seemed to have no clue what was going on. I was especially focused for this fill as I did not want to miss the port! We got in the most yet - 21 cc’s, for a total of 96 cc’s which puts us at 38%. Still hard to believe we are at roughly 1/3 of our goal size but as I keep saying, the more skin the better!

Hurricane Sandy is about to pummel the East Coast, and the Feds are off, which means Jeff and I get to stay home and hang out with Evan and Cotter. When I do the math and realize just how many hours a week Evan is apart from us (or sleeping), it makes me so sad, so I relish days like these!! I spent hours making him a ton of baby food and we have a decent milk stash, so my only hope is that if we lost power (which I believe is imminent), it will only be for hours and not days. I’m assuming we will also be off tomorrow, and who knows about the rest of the week. Regardless, we are enjoying our time with him!!




















Last run outside before Sandy!








Teething!




























We have a seven month old!!

Fill #3

We completed Evan’s fill last Friday and like the second one, accomplished the job with a complete trooper! My sister Hallie and her husband Alex came by for a visit and also assisted with keeping Evan preoccupied. I think it is hilarious because I am so concentrated on his injection but from the corner of my eye, I can see our visitors dancing, and I can also see the look in Evan’s eyes and know he is probably thinking what are these loonies doing! Ha! I didn’t quite hit the port this last fill. I could tell because I was trying to push in the syringe but nothing was happening. I was able to take the needle out and was successful on my second attempt.

Evan has had a ton of visitors over the last week which has been awesome! And a lot of people were under the impression that he would have a tube sticking out of his head that we fill, probably because that was our assumption until his pre-op. We actually have to break skin with a needle each time we do a fill. The needle is connected to a 30 mL syringe full of saline (of course not all of which fills the bubble). There is a tube that connects the two. The tube is very small so the amount of saline that passes through the needle into the expander creates a slow filling process.

We were able to get in 18 cc’s of fluid, which brings us to 75 cc’s, which is 30% of our goal. Although Evan has a 250 cc expander, there is nothing stopping us from putting in more if we are able to exceed our goal. The more skin the better! We would rather have 300 cc’s in there and supersede our goal than have to go through 2 more surgeries AFTER the December surgery (one to put in another expander, then one to remove it). Only time will tell.
It may be unrealistic to think that Evan won’t have another surgery, either a scar revision or cosmetic surgery. We do run the risk of his eyebrows being uneven based on the pull of the current skin once the new skin gets flapped over and sealed. We are keeping our fingers crossed that we don’t, but if we do, it is a surgery we can wait to have until Evan is older (1-2 years old most likely).

Fills 1-3

Watch it grow!!



Click on pic for a clearer image!

Second Fill

Remember in college when you had an exam late at night and the day just flew by, and you show up, possibly ill-prepared, with that knot in your stomach? Maybe it was just me :). But that is what I felt allll day in anticipation of Evan’s fill tonight. I could not stop thinking to myself, “I cannot wait until Saturday morning, because then it will be over”.

Jeff and I alternated staying home with Evan this week. Our nurses advised us against having his mom watch him (our original plan) as Evan is not used to CJ’s germs, whom is also under his moms care during the day. We didn’t want to take any chances, and luckily our bosses were willing to work with us. Jeff was home with Evan today, and about an hour before I got home, loaded his port up with Emla cream.

When I got home, Jeff told me his mom offered to come over and help. The fill process works best with three people: one person to hold Evan down, one person to do the fill, and one person to occupy/distract Evan. All three jobs are very important! For the first time at home, I set up the needle and syringe. Luckily we have written instructions or I may have forgotten a few steps.
Once the Emla cream was cleaned off Evan’s port (3-step process), we were ready. Evan has taken a ridiculous liking to “Gangnam Style” and Jeff’s mom was ready to entertain. As Evan was focused on the iPad and Jeff’s mom, I took a deep breath, and stuck the needle in the port. He didn’t flinch!!!! I did the test to ensure I was in the port by filling it with 3 cc’s, then taking them out. We were golden. We proceeded to get 12 cc’s in, so we are up to 57 cc’s, which is 22% of our goal. I think we could have gotten more, but better safe than sorry.

I was sooooo relieved that Evan clearly felt nothing. He was a super champ and Jeff and I were so relieved. I think we will have to do more than 9 more fills based on how much we are getting in, but we’ll see. Hopefully downhill from here on out!
I forgot to mention Evan’s 6-month old stats in my last post:
Height: 26 ¾: 64th Percentile
Weight: 15 pounds 5 ounces, 14th Percentile
Head: 42.8 cm, 25th Percentile
Jeff and I think his bubble will look even bigger on his tiny head!! Ha!












Sterile station with supplies




After fill #2 - much more prominent on the side




Happy!

Home Sweet Home

Ahhhh we are finally home! We got back Friday afternoon after a quick visit to Jeff’s Grandma’s gravesite. It was nice to see some of his family roots.

Evan is doing awesome. We definitely took a few steps back with his sleep routine but last night was a good night so hopefully we are progressing once again. He has had a few visitors which has been great, and everyone is impressed with how well he is doing. He really doesn’t seem any different…same old Evan with a bubble! We stopped by daycare today too so his sitter and two of the girls (each 4 years old) could see him. I think the girls were a little confused, which was expected. It will be interesting to see what they think once the bubble is huge!

I wanted to show a picture and explain his port (below). It is underneath his skin, and this is where we will inject the saline once a week. I hope the numbing cream works better this round, otherwise, Jeff and I may be switching duties. You'll also notice he has tape on his expander. This is due to a point in the actual expander. The tape is suppose to relieve the point and ensure fluid is evenly dispersed (all very normal!).

Pictures are more interesting than my thoughts, and there isn’t much more to update, so enjoy!
















Port and tube to expander




Thumb sucker!








And he loves peas!

Homeward Bound

I can finally say, and with a huge grin on my face, that we are on our way home. We had our first saline fill today and got cleared to have Evan’s drain removed as well. We decided why not get a head start to the trip since we knew we were going to take 2 days to get home, and arrived safely in Streetsboro, Ohio.

The week flew by and we didn’t get to see as much as we had hoped. It was raining and gross out on Wednesday so we just walked around the mall to get out. We also did a lot of famous house stalking in Chicago – pics below!

Filling Evan’s expander today was rough to say the least. Jeff and I decided that he would be the one to hold Evan as I insert the needle with saline. We both thought my job was tougher but after today, he definitely has the rougher one. The nurse spent a good hour explaining how to proceed with the fill and my nerves were terrible. Poking your kid just isn’t my idea of a good time. We put numbing cream on his port (which is located under his skin, right above his left ear) before we left for his appointment as it takes about an hour to process on the skin. After prepping, I finally stuck the needle in the middle of the port, Evan screamed, and I swore I heard/felt the needle bend so my reaction was to take it out. The nurses assured me this was fine, and that I probably just went in at a weird angle. Wow, talk about my nerves now! I tried to quell the uneasy feeling, so I quickly got a new needle, prepped the area (3-step cleansing process) and tried again. When inserting the needle, you have to first put a few cc’s in, then take them out, to make sure you actually got the needle in the port. Many multipart steps. The second time around, the nurse said I hit it spot on and I proceeded to fill the expander with 10 cc’s. Evan was absolutely hysterical. I don’t think I put enough numbing cream on, but the nurses said he was probably more upset about being restrained than anything. Still felt horrible.

The goal is to get the expander to 250 cc’s. We expect to put in anywhere from 10-25 cc’s per fill (more or less depending on how hard the expander gets and a few other tricks we were shown), so it will not be the same every week. One fill per week - our plan is Friday, after work, when he is nice and full but won't barf if he gets hysterical. The thought about pricking him again, 11 more times, makes me sick to my stomach but we will do what we have to do!

I can’t wait to get home tomorrow. Normalcy will be ever so welcomed.



Home Alone house.



Cameron's house from Ferris Bueller's Day Off.



Buckingham Fountain (Married with Children).



Soldier field.






























20% of our goal... This thing is going to get huge.



Awesome bag of treats from the Marriott wishing Evan the best. His dad ate it all. ;)