Saturday, March 26, 2011

Day 43 and 44: What a week

"Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." This was one of my favorite quotes from Margaret Mead in my graduate school days. We often used it during community building exercises to help motivate people to be the change they wanted to see around them. I saw this in action this week more than ever before. No, they didn't change THE world but they have indeed changed OUR world. 741 people came together in an amazing way and
have impacted our family more than they could ever know.

Jennifer Morais is a fellow photographer and mother. We met online 2+ years ago in a small group of photographer/mothers on Cafemom. We have grown together in our work and our families...both adding a 4th child to our brood. We have supported one another professionally and emotionally. She put together a Facebook page and planned to hold an auction to raise money to help our family. I remember early last week she was pushing to have 300 people "like" the page before the auction started. She hoped to raise $1500 to help us with our many expenses here in Italy and back home in Omaha. What she started was a snowball effect of 741 people coming together and raising a stunning $5441 for our family! The stress relief that brings us is HUGE. We have medical bills, our rent, utilities, other bills, our expenses here which is basically like living at home except more expensive. We returned our van to the car lot the day before we left and asked to be refunded on our deposit and payments (which they did) because the vehicle had too many problems. When we return we don't have a van for our kids or one that is going to be able to accommodate Liviana who will not be able to ride in a carseat anymore. This auction and these wonderful people have gotten us one step closer to that.

Jennifer has talked about holding another auction and I know there are other people already interested in donating. You can visit the page on Facebook HERE. Jennifer will be keeping everyone updated on a future auction.

While the auction was going on another group of women, most of whom I have never met, were planning a fundraiser in Omaha called the Mom Prom 2011. Sara, Veronica, Judy, Cat, Jennifer, Joy, Jessica and I am sure many others have planned an awesome event for April 22nd at the Regency Lodge. You can visit the Facebook Event page HERE. The plan is that the Mom Prom will be held each year with a new deserving family which is really amazing (I know I use that word way too much...*must find thesaurus*). I cannot wait to be able to help plan the event next year for another family (and dance the night away in a fabulously tacky dress). I cannot thank you ladies enough for what you are doing for our family. I feel like we are all friends already.

Grrrr, dealing with nurse issues as I sit here and G is sleeping. They are wanting to wake him up from nap unnecessarily. Must attend to the issue...shall return.

Ok....so it is a day later for my return. It is Sunday now and I am just getting back to my post. I made the nurse in the previous mentioned situation get a doctor because she was doing all kinds of things that were unnecessary and were going to wake him up. That is one of my biggest pet peeves is when they wake him up at night or when he is napping. A baby who is lacking sleep is not a happy or healthy baby. While I was speaking with the doctor she did just what I was trying to prevent...she woke him up. There really needs to be more balance between what specific medical things need to be done and what is best for the patient at the moment. It could have waited 20 or 30 minutes while he slept.

Anyway....onto those pesky counts. When I last posted I was insistent that the counts they gave me were wrong since they included a Neutrophil count back down to zero. Well...they were not wrong but they assured me this is normal and nothing to be concerned about. The next day his Neutrophils had gone back up to 200 and the following day they were 500! I was ecstatic. In the meantime he had to have another platelet transfusion and a hemoglobin transfusion. Those numbers the next day jumped right up of course to 100,000 and 11.4 respectively. The following day his Neutrophils had gone back down to 300 from 500..no biggie and his Platelets were 89,000 and Hemoglobin 10.4. Yesterday his Neutrophils remained the same at 300 BUT his Platelets went up to 99,000 and his Hemoglobin went up to 11.4. That is the first time they have gone up on their own and that is a huge sign. I don't have numbers today. The nurse rambled on about the lab not being reliable on Sunday so we can just wait until tomorrow. Very odd. We have been here for what...5, 6 Sundays and nobody has ever told us the Sunday numbers are junk.

We are soooooooooo ready to get out of here. I really think it will be soon. I think the fact that his two counts went up on their own is awesome and a sign of major progress. We are not talking a lot about specifics of when he comes home around the kids because we don't want them to get their hopes up again and be disappointed again. I truly cannot wait to see all of their faces when he comes home. I think there will be tons of squealing, hugs and kisses. It is going to be an amazing day.

The weather here has been looking up (I type that as it is overcast outside). The next couple of days will be rainy but then it resumes the bright, sunny 65-70 degree days. Despite the beautiful weather the locals are still wearing their hats, scarves and thick winter coats. When the sun is shining and it is 70 degrees you will still see any child under 4 in a winter coat and likely a hat and babies are still in their snow suits. No exaggeration. I realize that their bodies are acclimated to their weather and what is cold to them is not cold to us. They should go visit Omaha right now with the snow on the ground.

One of our babysitters back home, Abby Fitch, sent the kids a package this week. It contained 4 of the CUTEST dolls, made to match each child. They have not put those dolls down since they arrived. Aria and Miles play with them constantly and took them to the market with us, to the park with Tarah and everywhere they go. Aria's doll has a dress on with perfectly mismatched tights, blonde hair and brown eyes which is SO Aria. She prefers dresses and skirts to pants and shorts and usually has her own matching style. Miles doll has brown hair and eyes and a cute blue and green outfit. Giovanni's doll (Which will wait for him at home since he can't have it at the hospital) is bald :) and Liviana's doll has a tutu on and cute blue eyes. She likes to touch the tutu of course. The dolls were all made by Suzanne and you can visit her Etsy shop HERE VERY cute stuff. Thank you again Abby!

Gosh...I always have so much to post about and I forget it all when the time comes. Oh...the lead doctor is pregnant and due at the middle to end of April. I mentioned to her that I would love to take newborn photos for her as a gift and she was thrilled and said she loved my photos. I am so excited to do some work while I am here. I look forward to taking more photos of the kiddos once we can get out but doing an actual session and a newborn session to boot is so exciting!

I was talking to one of the other doctors about Liviana. We were discussing her issues at birth...the Congenital Diaphragmatic Hernia, the VSD, the Hemivertebrae and don't forget her missing rib. She said how there is not an association between MLD and those of course and we talked about how they never found any overarching genetic explanation for her grouping of issues. I said how amazing she did with her CDH and shes came home breastfeeding, no oxygen support and she was completely normal and she was perfect....and I then added...she IS perfect. We both teared up then. I can't talk about her without feeling that burning feeling in my eyes each time. Every time I see her her beautiful face captivates me. That Livi spirit pours out even if she can't express herself like she used to.

I take tons of photos but I can't do anything with them at the hospital and when I go home for visits I either forget or I choose to not spend time uploading and going through photos. I feel bad that I am a photographer and I share photos few and far between but I just don't have much opportunity. I have full cards and take a ton though...I promise. When Giovanni is out of the hospital you will see more.

He is waking and I forgot everything else I was going to talk about. I adore my kids so much. They keep me going, keep me smiling and keep me focused on what it is we are fighting for.

Hug Your Babies!

2 comments:

Tina said...

If you have another auction I would love to donate! Please let me know when it happens & I will also try to keep up to date with when it happens. Your children are beautiful and you are an amazing family (I use that word too much too!!)

Judy D said...

Thanks for the update. I am so sorry we met under these circumstances, but I believe every mother feels a connection with you. Each of us would go to the ends of the Earth for our children, and as we watch you traverse the Earth, I would do the same thing if were I in your shoes.

Praying for a miracle and hoping for healing.