Remember that dream I had a year ago?
During our stay in the NICU we would try to be there when the team rounded on Ben. The nurse would give report and the doctors would all discuss the plans and the respiratory therapists had notes about how he was doing on the ventilator. We, of course, were always full of questions about how Ben was doing, what the next step was, how were things going forward so we could get this boy home to us as soon as he was ready.
We would be daily reminded by them that in the NICU it’s always baby steps – tiny, tiny baby steps. Two steps forward, one (or two!) steps back. They didn’t want us to focus on his homecoming, they wanted us to focus on the fact that he had taken 10ccs in his feeding tube or that his chest x-ray looked incrementally better or that his culture had finally come back clear. There’s not a lot of planning in the NICU – it’s mostly about day to day survival. In a place where miracles are being desperately prayed for and there are too many days filled with tears and complications, it’s literally life or death. You can’t plan a lot in the NICU.
But I’m a planner – it’s how I cope, creating contingency plans and learning about our options and researching. It’s how I can feel some control over the areas I can influence, helping me better let go of the things I cannot change. I’m a mom – these are my babies. I plan.
Plus, I have six babies – planning is key to making it through the chaos. 🙂 Continue reading “Because Miracles Happen”
Ben’s story by Janet St. James aired on Wednesday at 10pm. There are been several ads running for the story on the radio and television so we were getting messages all day long from family and friends hearing it! Then the emails began… and they have not stopped. 🙂
This is the original video.
When we woke up we were greeted by an inbox flooded with emails, Ben’s Wish List page on Facebook had gone from a hundred or so Likes to several hundred (and now thousands), and there were a ton of personal messages for us as well. The entire day we were getting more, and the ones that made me laugh were friends and family literally across the nation saying, “I just saw you on the front page of CNN!” or “Why are you on the front of USA Today?” or “You’re on the news in California!” It was spreading near and far!
This is the follow up when Janet brought us into the studios to share what the reaction had been.
SO, we’ve not caught up! We woke up Thursday to such a tidal wave of support that while we’ve done our best to read every single email, we’ve not been able to answer them all yet! It may take awhile, and we really apologize. I like to have messages answered quickly so knowing I cannot possibly respond to everyone right away makes me antsy. But for some reason these six kids of mine still want me to feed them and play with them and thus, the emails and messages wait. 😉
Please know in the meantime that we have treasured every single one of you taking the time to write and share your support, suggestions, inspiration, and generosity. Words are failing us because while we knew we lived in a great community, while we treasure our fantastic village of people, we hadn’t anticipated Ben’s story being shared so far and so wide. (The messages from abroad began Friday morning!) We’ve been warned, multiple times, that we should avoid reading any comments on websites with our story because often there are internet trolls being hurtful. While I’ve not even seen all the websites on which the story was shared, the comments I have read are all kind and loving and incredible.
We think our kids are pretty fantastic, of course. We believe Ben’s story is miraculous, but we had never, ever imagined that sharing his wish list would lead to this.
There are amazing things in the works and we will be sharing them along the way. I promise we WILL catch up with the inbox and in the meantime, if you have sent something and we have not responded yet but you feel it’s time sensitive then PLEASE feel free to send it again to firstname.lastname@example.org as that’s the best way to catch me.
Also, we will be updating Ben’s Wish List as they are fulfilled. For some of his wishes we’ve been sent a couple opportunities and we’re trying to make sure that everyone is told THANK YOU, but that we’re not accidentally duplicating efforts when everyone is being so generous. I apologize that the page is not updated yet – until I finish the inbox I’m not sure what the status is for some things. If you’ve sent a message to help with one of Ben’s wishes please know how grateful we are, and we promise we will respond ASAP!
I don’t usually remember my dreams, but last month I woke up with one so vivid it still feels real – and I still tear up when I remember it.
I was sitting on the steps of Sacré-Cœur with Ben and we were eating chocolate croissants and the sun was low enough in the sky that it was the golden hour, when everything seems magical and glowing. As I looked at him I spread my arm out across the city and said, “Ben, this is Paris!” He had that smile on his face, the one that’s ear to ear – when he’s so excited he’s practically quivering with happiness. In my dream I cried, because I was so happy that he could see Paris, that he could fall in love with this beautiful place. He could see it.
When I woke up I told Kit about it, and I said, “We’re taking them to Paris.” I don’t know how or when, but we are going to Paris and I’m going to sit on those steps and we’re going to eat croissants and this is going to happen. Just you wait and see… 🙂
We’re often told that it’s hard for people to imagine how tiny a baby is at 1 pound and 6 ounces. We saw him daily and it’s still hard for us to wrap our minds around!
To summarize his story – B was born at just under 23 weeks gestation and was 12 1/4″ long. He was in the NICU for 109 days, came home on oxygen then became sick and went back on the vent in the PICU for 13 days. He had many of the complications associated with prematurity – pneumonia & other infections, lung disease, PDA and ROP surgery, hernia repair, feeding issues, developmental issues with gross, fine motor and speech… he has fought so hard to overcome these challenges and amaze us all. His lingering challenge has been his vision loss, but we know he’ll continue to surprise us with his persistence and creativity as he tackles any hurdle.
4 cups flour (I do half wheat)
1 1/2 t salt
1/4 t yeast
2 c hot water
Mix all, cover and let sit 8 to 18 hours or somewhere in there. 🙂
If you want a same day dough, increase the yeast to 1 teaspoon then let rise at least 4 hours or until bubbly looking. It has a less intense flavor but is still delicious.
When you want to bake flour a cutting board (we use a flexible one from IKEA) and dump the dough onto it, patting into an approximate lump. Preheat oven to 500 degrees (I do 450 as our oven runs hot) with a dutch oven inside of it. When hot, dump the dough ball into the dutch oven and COVER it (this is important.) Cook about 20 minutes, uncover then cook until golden brown on top. Dump out, cool, slice and enjoy! Add some rosemary, garlic & cracked pepper if you want a fantastic savory bread.
We bought the Lodge Logic 5-Quart Double Dutch Oven with Skillet Cover – it was comparable in price to others, it’s free shipping on Amazon AND the lid works as its own pan to make amazing cornbread. Or you can use it on the stove top for cooking, though I’ve not tried that yet because we have a cast iron skillet with longer handle. I like that it has the handles on the side vs. the top because it’s easier for me to grab and flip off when cooking ciabatta bread in a 450+ degree oven. We love it, and if we ever go camping we’ll be set for campfire cobbler. Though I did recently make a cobbler in this in the oven – a dump cake variation, it was delicious. Plus extra iron! I was told to cook in cast iron when pregnant and anemic, for all you expecting ladies.
(If you’ve NOT read Harry Potter then a brief explanation – Harry was the target of the evil bad guy but somehow managed to withstand the death curse thrown at him despite many others being killed by said bad guy. He became know as “The Boy Who Lived.”)
And this is repeat info for some of you but for those of you not familiar with Ben’s story – some background before the punchline. Apologies in advance – I censored a bit, but Ben’s story is not for the faint hearted.
I spent three months of my pregnancy being told I was going to lose Bennett. (In very kind and gentle terms, for the most part.) At 10 weeks we discovered I was miscarrying (again, we had just had our second miscarriage in July then got pregnant with Ben in August.) I was put on bedrest and I was already on progesterone supplements and we were sent to see the OB back up for my midwife then he sent us to the two perinatologists/high risk specialists. We also had a few other ER trips in there for complications (like, oh, my water breaking at 22 weeks) during which time poor freaked out ER doctors and OBs on call at the nearest hospital had to see our ultrasound and tell us we were losing our baby. (We reassured them we had been hearing that for months.) The perinatologist when he first saw my ultrasound called in his partner so they could be check it out – which is NOT comforting for a pregnant mom, let me tell you. They said it was the biggest subchorionic hematoma they had seen in the last decade of their practice. Woo-hoo! We aim to impress. Wiki Link (Essentially my placenta was not cooperating and instead of nourishing Ben it decided to partially detach and just bleed into my uterus, surrounding the amniotic sac. Not cool.) Continue reading “The Boy Who Lived”
We’ve been quiet here, I’m guessing no one is still following along but I needed a spot to document this wonderful and wild journey.
We’ve been pondering (a) where we should take Ben to see and experience things and (b) how to afford it. 🙂 He wants to see the Tardis in England, he’s a huge Dr. Who fan but alas, passports alone for a family are size will cost over $1000. (I still hope to make that happen someday!) It’s also tricky in that with my work I’m pretty much on call all the time – I have to plan vacations literally 9 to 10 months in advance and I’ve got babies on the schedule for next spring and summer already. I can’t just drop everything and go on a trip, but I don’t have more than week off call for months into 2014.
Stateside Ben’s big wish was to see Harry Potter world in Florida. (He also wants to see California, a waterfall, a mountain, snow, I should write up his whole list.) I did some preliminary research and saw tickets for the park would run our family about $1,000, it’s a 16+ hour drive (I am NOT that ambitious) and plane tickets were about $400 each (times 8!) Plus hotel, food, etc, etc. I felt so sad to tell him but I just didn’t see any way we could financially pull that off anytime soon. He said that’s okay – he would be happy with going to visit Legoland or Going Bonkers here in town. 🙂 He’s such a sweet kid… and he had no concept of the money involved, so we’ll be sure to get him to Legoland at some point, too!
We were running Kit to an eye exam and when we came home there was a letter on our door step. I wasn’t expecting anything so I opened it and read the letter – several times, because I couldn’t believe what I was reading and was in complete shock. I think I worried Kit when he saw me crying and saw the FedEx overnight package and wondered what bad news the letter held! Continue reading “The Adventure Begins”
This makes 2 dozen muffins or 2 loaves of bread (or half/half) so the amounts look like a lot and that’s why. We don’t split it but I’m sure you could. 1 cup of oil per 2 dozen muffins is one of the lower fat options we’ve found.
3 c flour (can do some wheat, add wheat germ, etc)
1 t salt
1 T cinnamon (or pumpkin spice of doing apple or pumpkin)
1/2 t baking powder
1 t baking soda
Mix in large bowl. In another bowl combine:
2 eggs OR 2 T ground flax & 1/2 cup water, mixed
1 c oil (can do half apple sauce)
2 c sugar (We do 1 1/2 cups but could do less. Also could try half sugar/half honey?)
2 c “mix” (see below)
1 T vanilla (or half vanilla, half almond, half orange extract, etc)
1 c nuts (optional)
1/2 cup oats (optional addition, may need more moisture if you add oats)
Mix wet and dry, bake as 2 loaves at 325 degrees for 1 hour or bake as 2 dozen muffins at 375 for 15 minutes.
“Mix” can be:
apples (diced or grated) or applesauce
orange or lemon juice (1/2 cup)
pumpkin (I do 1 cup pumpkin & 1 cup applesauce)
raisins or craisins (I do only 1 cup)
You get the idea. 🙂
Wrap muffins in sets of two or loaf in plastic wrap then in foil, stores well in freezer. Defrost in fridge. Makes great easy breakfasts or fast snacks. Can also be used for mini-muffins. If you are very careful about not over mixing the batter you can divide it in half after you combine the wet & dry and stir in two different additions. Half with lemon & coconut, half with banana. But again, be gentle so you don’t mix too much. These freeze so well that we often do a huge batch of pumpkin then a huge batch of banana. Also fun is to make a little streusel topping for them – mix a bit of flour, brown sugar, dash of cinnamon and then grate in some cold butter. Mix up, sprinkle on top. Yummy! 🙂
Every combination we do of these turns out a bit different with moisture, rise, etc. It’s a big experiment but always yummy. If you are planning to freeze them then you may want to do full oil – the applesauce/oil ones are drier and seem to not freeze and defrost as well.
This made a dozen full size and a dozen mini size cupcakes for me.
Update – these are dangerously yummy. I ate five and I’m not kidding and they weren’t the baby size ones.
1 TB apple cider vinegar
1 ½ scant cups plain soymilk (or rice milk or water or powdered milk)
2 1/8 cups flour
2 tsp. baking powder
½ tsp. baking soda
½ tsp. kosher salt
1 1/8 cups sugar
½ cup oil
1 ¼ tsp. vanilla extract
½ tsp. coconut extract (I just did 2 t vanilla or 1 t vanilla and 1 t almond)
Preheat the oven to 350º. Spray 22 muffin cups with nonstick spray or line with paper cupcake liners, set aside.
Place the apple cider vinegar in the bottom of a liquid measuring cup and fill the cup with soymilk to equal 1 ½ cups. Stir well and set aside (the mixture will curdle). I did 1 cup rice milk & 1/2 c water, it did not curdle but oh, well.
In a large mixing bowl, stir together the flour, sugar, baking powder, baking soda, and salt. In another mixing bowl whisk together the soymilk mixture, canola oil, vanilla, and coconut extract. Add the wet to the dry ingredients and beat until smooth using a hand-held mixer, stopping once to scrape down the sides of the bowl.
Fill each muffin cup half full. Bake for 15 to 20 minutes, until a cake tester inserted in the middle of a cupcake comes out clean.
Let cool in the pans for 5 minutes, then remove cupcakes from the pan and place on a wire rack. Let the cupcakes cool completely before frosting.
One of our favorite variations with these is 1 t vanilla and 1 t peppermint oil, then stir in some crushed candy canes. They’re amazing!