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| Cutest little patient. Love her hospital gown- Koalas in rocket ships! |
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| Welcome to the Infant Unit Miss Alexandra! |
Tuesday, July 24, 2012
First Day on the Infant Unit
The Burden Basket
On the third floor of Primary's, they have the meditation room. It is a small quiet room, you are not supposed to sleep or eat in there. It has a beautiful stained glass window. I like the fact that it doesn't cater to just one faith. They have several religious books and some healing stones and electric candles. They have a wall full of pamphlets dealing with grief and loss. The lights can be dimmed, or turned off completely. It is very peaceful.
They also have the burden basket, which is a Native American practice of leaving a basket outside your door, to put your burdens in so that they do not follow you into the home. The basket at Primary's is supposed to be made out of a special kind of wood that absorbs your sadness, fear and anger. You write your burdens on a peace of paper and place them in the basket, letting them go. Eventually the hospital chaplain burns them. The burden basket was just what I needed yesterday. I thought it was a wonderful thing to have in the meditation room.
I hope I didn't botch the meaning of these, my information comes from my own understanding and http://www.burdenbasket.co.uk/explanation_burden_basket_htm.
GO ALY!
I Graduated from the PICU and all I Got Was This Stupid T-Shirt
So Monday afternoon, Aly was looking really good. She had her arterial line taken out and had the EEG (the machine that they glue to your head so they can read your brain waves, I call it the Babooshka hat) removed. Her nurses gave her an express baby wash and changed her bedding and made her look super pretty. We had a speech therapist come by to do a swallow study and Aly did great. She had her first bottle since we went back into the PICU Wednesday night. She was a hungry little girl.
The PICU resident, Dr. Jessica, came by and looked at her and said she was doing so well, they wanted to let her "graduate" from the PICU to the infant unit. So we packed up room 12, where we've been for the last 5 nights and headed two floors upstairs to the Infant Unit on the 4th floor. Aly has a private suite, with a bathroom, and an excellent view of the parking lot. She even has a entertainment unit!
She's been doing good on the floor, although we are used to the more constant monitoring of the PICU. In the PICU, you are usually one nurse to one or two patients, and the unit is much more locked down and controlled. In the PICU, they have a shift change every 12 hours when the parents and visitors are kicked out while the Drs and Nurses huddle up and discuss the patients. It was frustrating at times to have to just pick up and leave for an hour while she was so sick. At times it was nice to have a break.
We had some amazing nurses and Drs in the PICU, I've been making a list of all the awesome people we need to thank. Now, I will have to keep track of the great ones on the floor. We are lucky that we live so close to Primary's. I can't imagine doing this if home was in another state or hours away.
Now that we are on the floor, we are hopeful that this can be a healing time for Aly, that the Doctors can continue to brainstorm and work together to figure this out. They still don't know what caused the brain swelling, and they are now moving away from the idea of it being a viral infection. They are going to have a rheumatologist look at her soon. They may have to a scan to check for a tumor. These are all things that scare me. Aly is a strong girl, and I know she is in the best hands, but I don't know how much more bad news I can take. However, a diagnosis could be good news because by some miracle this could a curable condition that we could take care of in this stay at Primary's and then we would never have to deal with it again. Right? A girl can dream..
I'll have to update after we get into a rhythm on the floor and learn what makes the infant unit tick. I'm hoping we continue to like it there and that we never have to see the PICU again. One thing that makes it different is she's able to wear actual clothes, instead of just a diaper. The gave her a little white t-shirt to stay warm, hence the title of this entry. :)
GO ALY!
Monday, July 23, 2012
Gratitude
I figure the best place to start this blog would be a on a positive note. I eventually will have to get around to rehashing the last 6 or so days with the whole sordid tale of how we got here, but that can wait for another day.
I am not religious. I am not an atheist either. I would classify me as a hopeful agnostic at best. But I respect those with religious beliefs who do not feel the need to foist those on others. I believe in the power of positive thinking and I know that's what a prayer is. I believe God works through people and in this dark, lowest worst time of my life, God (if there is one) is working his ass off through many people.
Since Aly went into the hospital, we have had an intense out pouring of support and love sent our way. Complete strangers in every corner of the country are thinking about our baby girl and wishing her the best. It's pretty amazing and has pretty much restored my faith in people. I was a pretty cynical person before. But I've learned that even the most gruff, anti-child person can't stand to see a sweet little baby suffer.
People have come out of the woodwork in every way, we've had so many people offer help. People have sent gifts, offered to let us crash at their houses, make us dinner. We've had several religious people offer to have our baby blessed. Still haven't decided on that one. Can't hurt, is the way I lean, but I don't know if I want a stranger visiting just to do that.
I know they may never figure out what caused this. I don't know if I even care anymore. I just know that there are so many people out there who love my baby girl and that means everything to me. She will never doubt that she is loved by many. And as a Mom that's always what you want. I now know that I have friends in every corner and that support is never far away.
Thank you everyone! If you've liked a status on facebook, sent us a comment, thought of Aly in the shower for a minute and wished she was better, said a prayer, lit a candle, did a interpretive healing dance, or even if you just looked at a picture of her and smiled. I feel like every little bit of that good energy is fueling this fight.
As always...
GO ALY!
I am not religious. I am not an atheist either. I would classify me as a hopeful agnostic at best. But I respect those with religious beliefs who do not feel the need to foist those on others. I believe in the power of positive thinking and I know that's what a prayer is. I believe God works through people and in this dark, lowest worst time of my life, God (if there is one) is working his ass off through many people.
Since Aly went into the hospital, we have had an intense out pouring of support and love sent our way. Complete strangers in every corner of the country are thinking about our baby girl and wishing her the best. It's pretty amazing and has pretty much restored my faith in people. I was a pretty cynical person before. But I've learned that even the most gruff, anti-child person can't stand to see a sweet little baby suffer.
People have come out of the woodwork in every way, we've had so many people offer help. People have sent gifts, offered to let us crash at their houses, make us dinner. We've had several religious people offer to have our baby blessed. Still haven't decided on that one. Can't hurt, is the way I lean, but I don't know if I want a stranger visiting just to do that.
I know they may never figure out what caused this. I don't know if I even care anymore. I just know that there are so many people out there who love my baby girl and that means everything to me. She will never doubt that she is loved by many. And as a Mom that's always what you want. I now know that I have friends in every corner and that support is never far away.
Thank you everyone! If you've liked a status on facebook, sent us a comment, thought of Aly in the shower for a minute and wished she was better, said a prayer, lit a candle, did a interpretive healing dance, or even if you just looked at a picture of her and smiled. I feel like every little bit of that good energy is fueling this fight.
As always...
GO ALY!
Welcome
This blog is to document my daughter Alexandra's (Aly) journey towards healing and recovery during her hospital stay at Primary Children's Medical Center in Salt Lake City, Utah. I would also like to use this blog as an outlet for my own thoughts feelings, rants etc that have been churning since this whole ordeal began. I welcome any followers, comments, hugs, cold hard cash and strength you want to send me or my family, but especially for Aly. This is her fight, we are all just sort of on the sidelines watching her and cheering our hearts out. GO ALY!!!
Sunday, July 22, 2012
9 months
Dear Aly,
Happy 9 months Baby Baboosh! We are extra super excited this time. You are still the cutest, sweetest thing. You love to scoot on your tummy and roll both ways. You like your thumb better than the binky lately. According to the hospital, you weigh 7kg (15 ish lbs) and you are 27 inches long. Unfortunately you missed your 9 month appt with your regular doctor. You were sleeping through the night most of the time. You love solid foods and will try anything. You love to grab the iPad or our phones and we have downloaded a couple baby apps for you. We're very sad you aren't home for your birthday and that you have been through so much this past week, with the seizures, the MRI, the EEG, the art line, the picc line, the numerous ivs, tests, strangers coming at all times of the night and the puncture marks on your legs from the IO (intraosseous infusion). Someday we will tell you this story and you won't remember a thing about it. Just know, so many people out there sent you their love, strength, prayers, healing vibes, positive thoughts and cheers. You are a warrior princess and you are so loved.
Especially by me and Daddy!
love always & always,
Mama
Happy 9 months Baby Baboosh! We are extra super excited this time. You are still the cutest, sweetest thing. You love to scoot on your tummy and roll both ways. You like your thumb better than the binky lately. According to the hospital, you weigh 7kg (15 ish lbs) and you are 27 inches long. Unfortunately you missed your 9 month appt with your regular doctor. You were sleeping through the night most of the time. You love solid foods and will try anything. You love to grab the iPad or our phones and we have downloaded a couple baby apps for you. We're very sad you aren't home for your birthday and that you have been through so much this past week, with the seizures, the MRI, the EEG, the art line, the picc line, the numerous ivs, tests, strangers coming at all times of the night and the puncture marks on your legs from the IO (intraosseous infusion). Someday we will tell you this story and you won't remember a thing about it. Just know, so many people out there sent you their love, strength, prayers, healing vibes, positive thoughts and cheers. You are a warrior princess and you are so loved.
Especially by me and Daddy!
love always & always,
Mama
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