It is going to be OK

I realize my sanity was a little questionable day before yesterday. Adam and I both felt like we were teetering on the edge of a breakdown. This is the stuff that no one talks about. No one ever says that it is ok to feel like jumping into the river when your entire life crumbles around you. They only say "oh it is ok", "you will get through this", or "I am praying for you". While I love prayers and have a strong faith in God, sometimes I just want someone to take on one of the problems and FIX it. Fix it right then. Let me give you a brief rundown of our past 2 weeks: Weston needs a heart and lungs NOW (his meds are no longer working as effectively), Adam has to go back to work asap so that we can keep our insurance that will only pay 80 percent of his transplant expenses, he will not get paid for the first few months of work because we will be paying back ins premiums that have built up while Adam has been gone, I am having Ellie on Monday, and we found out today that the apartment we live in that is rented through the hospital is ending their contract so we have to move by Feb 10 or pay 2600 a month in rent. Social work also did an estimate of how much we need to fundraise for out of pocket expenses and they came up with 100,000 to 200,000 dollars. AND-I am being induced Monday so Ellie will be arriving (the highlight of the week!).

After a short pity party for our situation, I posted on facebook-not really knowing what else to do. I was amazed by the support we received from our family and friends. Having a child with a critical illness is stressful enough but to add all of those other things to the mix-well, it is just overwhelming. Everyone keeps saying that "God doesn't give you more than you can handle". I would like to see some research on that because I feel like Adam and I have gotten more than our fair share here recently.

Pity party over and now looking forward. Friends are working on fundraising ideas and I am thankful that they are taking over. Weston ate mac and cheese yesterday and has had a pretty good day today. I have spent a lot of time wondering about Ellie's timing. As most everyone knows, I was pregnant before we left Tennessee. Every once in awhile, we talk with someone who can't do math and they seem to think we got pregnant while up here-you know, because critical illness is so romantic and the few times Adam and I have even slept in the same bed, making a baby was 1st on our list. Anyways, no one ever could have thought that we would be here for 8 months and probably longer. No one ever would have thought our family would be torn apart. But, the other day, it dawned on me why God sent Ellie at such a stressful time. Ellie is the one positive experience we have. Weston (and the other kids) are excited about a baby sister. Weston cannot wait to hold her, feed her, and give her a bath. God sent Ellie to us to give Weston something to look forward to and something to be happy about. Ellie is a blessing and for the first few months, I had been taking that for granted.

Fast Forward

We have been in Philadelphia 7 months and 1 day. So much has happened since we arrived and we have gone on so many wild rides. First, we were separated from the kids because we were here and Weston was so sick. We were told Weston was going to die which was horrible. Thankfully, he is a fighter and Adam and I beat the heck out of his back with this vibration thing 24 hours a day to get the pneumonia out of his lungs and he not only survived but he did better than he had. Then, we brought the kids up when things were a bit more stable. We agreed they would stay until after Christmas or until Weston's transplant-whichever came first. We were so hopeful that he would get a transplant during the holidays. Holidays are the big transplant time-but they have came and went now. I have been worried about how I would feel this week about no transplant and I am not going to lie, it is heartbreaking to know that he needs something to desperately and there is nothing that we can do but wait. The kids went back to Tennessee on New Years Eve. It was bittersweet. We knew that we were going to have to send them to minimize the germ risk during cold and flu season for Weston but we will miss them and their wild ways. The apartment has been so sad and boring since they left. I have pretty much decided that 1) I would never do well living alone and 2) I will probably not do so hot when the kids move out of the house.

Ellie is growing and can arrive anytime. Ideally, baking for another week would be great but since it feels like she is kicking my lungs, I believe she is ready to exit. My doctor said that I have to stay in the hospital for 48 hours after she is born. I feel that is excessive since I am going from 1 hospital to go sit in the CICU at CHOP where there are zillions of doctors just in case something went wrong. I will push for an early departure once I see how labor goes. The only labor that I really had a hard time recovering from was Sutton and with him, I lost so much blood that my blood pressure kept dropping and I kept passing out-even after I had been discharged. I feel so fat at the moment. Maybe it is because I can't breathe or because Weston insists on me getting up and down a bazillion times to do things for him which makes me groan and pant. I can't wait to lose the weight. I am usually never worried about dropping the pregnancy weight but I am also usually at home running after the kids and it just falls off. I love my Zumba class at home so I am hoping to get Zumba for the Wii so I can do it pretty soon after Ellie is born. I have the 30 Day Shred too that I did before I got pregnant and it is a good workout-probably not for the super athletes out there-but I liked it just fine. I just can't wait to hold sweet Ellie and bend over without thinking I might throw up.

Looking at the year ahead, everything is so up in the air. Everything depends on Weston's transplant. Our family is on hold and it is frustrating to have no control over anything. Our main friends up here are hospital staff. I told Adam we need to work on that. Being here has put things in such a different perspective. So, I keep thinking, fast forward hopefully 6 months or so, and I will be blogging about how we are going home, how great his transplant went, and how excited we are to finally get back to Blountville. I still need to post picts from Christmas. I promise to do that soon-or at least before next Christmas.

I love and hate Pinterest

I had been planning Christmas for awhile. Presents are always bought throughout the year when I see stuff on clearance and thankfully Adam's dad was nice enough to bring them up when he came near Thanksgiving. We had planned to do crafts everyday and baking everyday-since I am split between the apartment and the hospital, this would be 12ish crafts and 12 baking/cooking events. Well, well, well, Pinterest comes along and just blew that out of the water. We still did some of the crafts I had planned but goodness gracious, the ideas posted on Pinterest are SO cute! I mean, who doesn't think they need 50 snowmen made of salt dough after you see those sweet little handprints or 6 (in our case) little reindeer made of clothespins and popsicle sticks? I will try to post picts of some of the ornaments the kids have done. They really did a great job and have been so good with the holiday craziness.

Jingle Bell Breakfast

In trying to keep our traditions the same, we had our yearly Jingle Bell Breakfast where the kids Elf of the Shelf arrives. Typically, we do this on December 1 but we had some delays in getting Shelf's wife a skirt. Shelf is what the kids named their elf a few years ago. The Elf on the Shelf is such a fun little story. Your elf arrives and everynight, he/she flies home to Santa to report on how you have acted throughout the day. Then, he/she comes back and finds a new spot in the house to sit and watch. The kids love this tradition and are very serious about making sure no one touches Shelf because he will lose his magic.

For breakfast, we did breakfast banana splits (thanks Pinterest). I made homemade blueberry and strawberry sauce. We cut bananas in half, used greek yogurt as the ice cream, topped it with the sauces, extra berries, and nuts. I had bought whipped cream and cherries to top them with too but I left those at home (oopsy).

Coordinating 6 young kids to all have breakfast at the hospital takes a lot of patience and lots of planning. Weston is on 6 IV meds that run directly into a line into his heart plus his nitric that he cannot be disconnected from for more than a few seconds. He can't just leave his room. We have to bring his nurse plus a respiratory therapist with us. This gives lots of challenges for the other kids to even get near him without getting tangled in all of the cords. Avery, especially, just LOVES Weston. She squeals with delight as soon as she sees him and wants to go running right up to him. It is so sweet. I am sure she doesn't remember him before he was connected to everything because she was just a little baby when we first came here.

Because we are in 2 different places this year, Shelf had to get a wife. Shelf wrote the kids and note to let them know that he had been in Vegas getting married. The kids named his wife Snowflake. Shelf is going to stay at the hospital and watch Weston and Snowflake is going to be here at the apartment watching the other kids.

We also did all homemade ornaments this year. This is still a work in progress because we are doing one everyday but so far, the kids have loved this. The ornaments have turned out really cute too. Now, if I can just get them to understand that we don't have to take all of the ornaments off the tree constantly to rearrange them.

We decorated Weston's room last week and I will try to post some picts. Everyone always comments on how festive his room looks. My friend, Betsy, is making Weston some things for me to string up along the windows and for his name on the door.

This is going to be the best Christmas ever or I am going to die trying to make it the best. The hospital is not going to ruin it for the kids and even though it is 10 times harder to do everything with kids in 2 places and the hospital, it is going to be GREAT!

Where did November go?

My second trimester flew right by. I managed to get lots done and felt pretty good. As long as I stuck to a fairly strict diet, I tended to feel good. The 3rd trimester has hit me in the face like a ton of bricks. More accurately, it feels like I have 30 pounds sitting on my stomach crushing my lungs and kicking my bladder-which I know is impossible since I have only gained 8lbs so far. Ellie gets a weight check in a week to see how she is growing and if all goes well, she should arrive in mid to late January-hoping more like mid January. I feel like telling Adam not to worry that I won't be obese forever because, like most pregnant women feel this far along, I feel like a normal sized person trapped in a fat suit. With all that being said, it is still amazing to be pregnant and feel Ellie move. Growing a human life is a miracle even with the aches and pains. The kids are in awe of feeling her kick and squirm around. They fight over who she will look like and who gets to hold her first.

Weston is doing well. His days are very busy with many therapies. Most recently, his OT and I had a strongly worded conversation about how he needs OT twice a week and if he wasn't in the hospital, they would expect me to take him to OT twice a week so I expect them to come see him twice a week. I feel like Adam and I have done everything imaginable to make sure Weston stays with and ahead of his peers and now, they need to do their part. I know the stronger he is going into surgery, the stronger he will be afterwards. I am kind of hateful when it comes to Weston's care. I want things done correctly and I don't like crappy answers. I feel like, in some ways, we were let down for the almost 2 years that Adam and I begged for answers about why Weston would almost fall over dead 1,2, 10 times a day. Since even these amazing doctors couldn't give us answers and we managed to keep him alive, the least they can do is take good care of him now until his transplant.

The other kids are doing good. Easton usually gets to go see Weston once a week and we try to bring all of the kids up every other week. They were sick last week so they won't get to see him until maybe the weekend. The hospital gave us free tickets to Sesame Place and it is supposed to be really nice on Friday and Saturday. We have never been and know we probably won't ever get the opportunity to have all of the kids up here so we can take them.

Other than that, we are just waiting for the call for Weston. Waiting on something we have no control over is the hardest part.

Easy Cobbler (cheaters version)

I am not a baker and I don't even like making desserts that don't require baking. I am trying to figure out everything I am going to make for Thanksgiving and I thought a cobbler would be something fast that I can transport easily to the hospital. I have made one before with canned fruit and cake mix but I hate canned fruit. It doesn't really taste like the fruit it is supposed to be. So, here is my frozen fruit version. It was SO much better and the fruit all had the best flavors.

1 big bag of frozen peaches (unsweetened)
1 big bag frozen mixed berries-mine had raspberries, strawberries, blueberries, cherries, and blackberries (unsweetened)
1 white cake mix
1 stick of butter
About a cup of water

Defrost fruit in bowl. Mix defrosted fruit, juice from fruit, melted
butter, and cake mix together. Add enough water to make the cake mix all wet. Pour into greased 9X13 pan and bake at 350 until the center is no longer jiggly. I don't have a set time because my oven here is SO hot that everything bakes really quickly.

After it is done, I let it sit for about 20 minutes to cool and set. The frozen fruit makes such a huge difference. I couldn't believe it.

blogs and happenings

I was reading a post the other day on my friend Jennifer's fb page and there was a lady that had blogged about why she shouldn't have had 8 children. It was a great article about how after her 4th baby she became overwhelmed by her shortcomings. Through prayer and prioritizing, she now has 8 children. She talked about how she would never be the perfect parent but her kids were loved and that was what mattered. My friend Jennifer, coincidentally, also has her hands full (hahaha we joke about it all of the time) and is having baby number 7. I love Jennifer, she is the kind of mother I would love to be. She loves that she has a big family and doesn't care to tell the world. I admire that. I feel like we all have those kinds of days and especially moms have those kinds of feelings of not being enough. Are we doing enough? Are we making good memories? Are our kids turning into good people? The past 5 months have been a rude awakening for Adam and me. We work tirelessly to make sure Weston gets every normal experience that is possible in the hospital while trying to make sure our other 5 get to do all kinds of fun, fall activities. We are exhausted but determined to make it through this strong parents and stronger Christians. If God has showed us nothing else by all of this, he has showed me how Adam and I were really made for each other. There is no one else I would rather go through all of this with. He is my best friend (sappy, I know). We got the nicest compliment the other day though. A man said "for all you all have been through, your kids look so happy". The guy was a faily random stranger (just a guy at the hospital) but he made my week!

Today, we had Christmas card pictures. Thankfully, my friend Sarah wanted to take on the challenge of the Super 6. The kids do look beautiful in pictures. Pictures are one of the few things that I will never regret doing. I am not sure what our nurse thought-perhaps that I was on crack. We had never had her before and here it is Ocotber and I am forcing the kids into their finest Christmas PJ's for pictures that don't look "hospitalish" for our Christmas card. Sarah did a great job and I can't wait to see the previews.

Tomorrow, the kids are coming for the Hospital Halloween Party and Trick or Treating. I can't wait to see them all dressed up. Dressing up is one of their favorite things. They would dress up 24/7 365. The boys are going to be Batman. The girls are going to be Minnie Mouse, Cinderella, and Snow White. I also got them another dress up outfit on clearance for Christmas. They haven't had many dress up outfits here so this will be a great surprise for them.

We are still figuring out the logistics of Thanksgiving and Christmas. Adam's sister and her family are planning to come for Thanksgiving. It is always good to see them and we wished they lived closer (to TN not PA). I will miss being at home during the holidays but I will not miss my sisters and their drama filled holidays.