Come on Irene!

Irene came by this weekend to visit and hang out for awhile...overall I think we weathered her storm nicely! Sometime Friday evening we both realized that we were parents to three babies, one who requires electricity for his medical equipment, and we better get something prepared for this hurricane. I went to the grocery store & came home with chips. Brian came home with a few flashlights and no batteries. That's the best we could do!

Saturday night we had the generator on the porch, everything ready to go, and then I laid in bed pretty much awake all night waiting for the power to go out. It didn't happen until around 6am - lovely. It's funny how light you can sleep and how fast you can go into action mode as a parent. My fears were wasted as the generator worked perfect and Jackson never even stirred.
As the morning progressed we quickly got our priorities in order as you can see. iPhone and coffee were a necessity. Initially I was nervous we would run out of gas so we started trading cups of coffee for extra gas to our friends and neighbors! Later in the day, when I realized we had plenty of gas, you would find me in the same spot with my hair dryer and flat iron plugged in and ready to go. Who knew a generator was SO AWESOME!

Of course we could not keep Mr. Curious away from the window. He needed to keep an eye on Irene, the generator, the red gas cans that were on the porch....this kid notices everything and takes it all in! It was a nice break for us really, instead of entertaining him we just let him stare out of the window.
We lost power for two days and had one tree down. It cracked our mailbox but who cares, we were fine and the basement stayed dry which was another one of my huge fears. The babies were awesome, they even slept until 7:30 Sunday morning. We both felt like we were given something we had been asking for...a quiet, dark day to lay perfectly still and not have anything to do !!!! Which is what I did during every nap and at precisely 7:01pm when the babies were safe in their cribs.

Monday morning we woke up to a cool sunny day and enjoyed a lot of family & friend time. Due to down'ed trees and power lines we were kinda trapped on our mountain so we all chipped in food, drinks and just spent the day together. Just as everyone was loosing patience Monday evening the power came back! We promptly turned on as many lights and tv's as we could and went back to the real world! It was a nice break though!

Mama Bear

(This is a real picture taken from our neighbors camera earlier this week)

This post will cover multiple issues in the last week of our crazy family life! For those of you who know where we live you aren't surprised to learn that we spot bears several times a year strolling through our yard or on the roads. NJ loves their black bears and does so much to protect them. You have NEVER seen a more fired up group of yankee red necks than when NJ is about to allow a period of black bear hunting. Anyway, lately we have had a couple of "too close for comfort" bear spottings. The first came as I was about to stroll down the driveway to get the mail (my only outing of the house some days and I really look forward to it!), I heard a crash in our garage, turned frozen in place to watch a bear stroll out carrying a bag of garbage in it's mouth. I did not know that Brian had forgotten to close the garage on his way to work and I guess the lure of dirty diapers was too much for the bear to resist. I will leave out the dramatics of how I felt but it was very scary and involved my life flashing before my eyes. The bear was happy as can be though, sat on the edge of our yard eating garbage.

After lots of discussion with Nicole we decided to buy some bear repellent and keep the babies closer to home until it arrives, surely they would be safe in the driveway right? A week passes by and in my never ending to-do list researching bear repellent fell way down to the bottom. This past Friday Brian and I were upstairs discussing Jackson's healthcare (more on that later) when I spotted a bear strolling around the front yard. Not too shocking until I saw a cub and then another cub. Even though I have only lived in bear infested lands for a year I know this is not a good situation. I also knew that the house was blissfully quiet - which meant there was no baby inside. I think for the first time my "mama" instincts took over. I ran downstairs taking a quick sweep of all rooms to confirm there was no one inside, checked the back deck through the windows as I ran to the garage, scanned the garage and realized all strollers were accounted for so that meant the babies were somewhere very close to home and in the front yard. As I turned down the driveway (that is miles long it seems - really its crazy long) I saw Neva's toy car and Matthew's walker at the end, empty, with no one in sight. And yes the bears were still just chilling in the front yard eating leaves. At that point I knew the babies were safe, there would be signs if something had happened, but I couldn't find them. Ran down the driveway yelling for Nicole, crying, trying to figure out if she had hidden them in the woods, trying to think like Nicole would think! I saw our neighbors garage was open and it clicked that she was in there with them. As I was running over she came out, we all hugged and cried as she told me how the mama bear had seen them and was not happy about it. That she had started walking towards them so Nicole grabbed babies and ran! Then I thanked her for saving my babies lives and sent her home early figuring she would call to quit at some point that weekend. Anyway...very scary but surprising how clearly you can think in a moment like that. Also surprising how I knew they were safe but that didn't make me feel one smidge better until I laid my eyes on them and saw it myself.

That prompted me to go inside immediately and order my bear repellent. Hopefully we won't run into any bears as angry as the package shows but if so we are ready.

Oh and as a side note, I got a call later in the evening that my order couldn't be shipped to a NJ address. NJ doesn't allow wildlife items to be ordered online. Seriously? This place is in love with their wildlife, whether it be people or animals! So now it's going to SC and then coming my way.

Next, I was also playing the role of a mama bear in the last week. Growing up we were all taught to be nice, it gets you places in life right? Sadly in the medical/healthcare world it doesn't work that way. We have been working for two weeks to schedule Jackson's next GI / ENT appointments at CHOP with no success. They want us to gather tons of medical records, fax over all of his documentation, and then give them two weeks to review before we are offered an appointment. After a few hours of thinking on that I called back to tell them no, it wasn't going down that way, figure out another way to make this happen. Another call from CHOP a few days later and good news! They will gather the paperwork for me and they have secured us a GI appointment on October 25th and ENT appointment on November 7th. I didn't even have to think about that one, my immediate response was no, go back to your scheduler and figure something else out. We will not wait that long for him to be seen. After some heated conversation exchanges I finally said to her what we all know is true "Listen, we spent 4 months at your facility, I know the drill. The mama screaming the loudest gets what she wants. I will be that mama screaming in your ear until I get what I want for Jackson".

Jackson is going to Philadelphia this Thursday (8/25) for his GI appointment and he will be headed to the operating room with his ENT surgeon September 6th, two weeks from today. Some things are worth the fight and the screaming.

Movin' on up!

When you bring home a micro premie baby they are "babies" FOR-EVER. They stay these tiny, under-developed little beings for so long you think it's never going to end. Time flies by yes, but your babies don't change that much. Suddenly our babies have bridged the developmental gap and they are changing every minute of the day. Now when I turn my back for a few seconds not only are they not where I left them, they are in a completely different room....or in two different rooms. Matthew is leading the charge of course but his new little buddy is never far behind. In the last few weeks Neva seems to have began warming up to her little brother. He can touch her, they can sit side by side, they can share at toy with limited screaming. She watches everything he does and tries so hard to keep up with him. Since he has always loved her, he stops to look behind him as he is crawling away to make sure she is following, he gives her huge smiles and sometimes even comes back and waits on her.

Yesterday Matthew reached his biggest achievement thus far in making it to the third step. Part of me wants to see how far he can go and part of me wants to pull him down and immediately put a baby gate up in every room of the house. Right now we are going down the path of no baby gates. Yes I know that that will change very soon but listen people, when you have three babies they have to learn hard lessons early. You do not have enough hands to cushion every fall, to hold onto to each of them as they start exploring, you don't even have enough hands to hold two down while the other tries to find it's way in the world! Our babies have to learn early on that if you fall down it's going to hurt so you better be more careful next time. Of course Brian thinks that their heads and limbs are not ready to handle these tough lessons but he isn't here most of the day so I get to try it my way. I know that soon they will be corralled into a pen but right now I like seeing them become daring and adventurous. It's much better than trying to make them sit still and play with a toy while they thrash about screaming.

Anyway, yesterday I had these two dressed and ready for pool time and they decided to test their wings a bit first. Matthew is working hard at getting up those steps and Neva is not far behind him, always trying to catch him! You can also see our awesome play room! Yes it's right at the front door and the first thing people see but there is no hiding baby stuff in this house. A few weeks ago we put this together and we have taken our living room back! It's GREAT!!

Jackson goes to Philadelphia

Jackson made the 6hr trip to Philadelphia last week for his first ENT evaluation since getting his trach in January. Unfortunately it was a discouraging appointment as we left with no steps forward, only more concerns and more appointments. Jackson is not tolerating certain things very well so his surgeon is concerned there is airway damage above his trach or that he is still refluxing which is causing damage. After a lot of research we have agreed on a treatment plan to figure out what is going on with our little man. First we will travel to CHOP for a GI evaluation that will hopefully include reflux testing. After we get those results we will book a trip to the operating room with ENT and GI. Together they will perform another bronchoscopy (going down the airway with a camera) to determine if there is damage and what is causing it.

It's not easy on anyone to make the trip however we know it's best for Jackson right now to be with the best of the best. No dates for the appointments yet but we are hopeful to have this taken care of by fall!

Matthew turns one

In typical Matthew fashion two things happened immediately. First, he almost burnt his fingertips as he reached for the flame on his birthday candle (ok really my fault - I didn't know that I shouldn't have put a candle infront of a baby!) and instead of eating the cupcake he went straight for the candle. (First picture) By the time we realized what he was doing and I had time to grab the camera and get a picture (of course!) he had already eaten some of the candle and most of the burnt wick.

Matthew ate his entire cupcake and also ate most of his cake the next day. He sat very quietly and ate away...I think his hope was that we would forget about him and he could eat everything he wanted! He had no problem with icing all over him and he gladly wore anything we put on his head, unlike Neva. Again I think he was willing to do whatever it took to eat that cake!

Jackson turns one

Like everything else in his life, Jackson loved his birthday parties. He loves attention and was the first to get his hands into the cake and start exploring it. He liked to squish the icing in his hands and quickly had it all over his face AND all over his trach! We let Jackson lick his hands and even put some icing on his tongue which led it big smiles. We are so hopeful that the smile was because he could taste it and he liked what was happening in his mouth!

Neva is one

This sums up Neva's multiple party birthday experience. Looking like the diva she is as she basks in the flashes of our cameras, then annoyed about everything. Neva does not like to feed herself so we tried to get her started and then let her finish but it only resulted in a lot of cake/icing all over herself as she flung her hands around. She was the definition of a hot mess!