Friday, March 29, 2013
Three
Mark is gone shooting a wedding, so just us this morning. I'm happy to have my 3 girls all together!
Thursday, March 28, 2013
Wednesday, March 27, 2013
Due date
Today was Ruby's due date. Seems that she has finally caught up with herself...she's eating much better and dare I say...possibly coming home?! When the nurse told me that today I was shocked for a few minutes, then welled up in tears of sheer joy.
Still no word from pathology. So while we wait, they figure we might as well be waiting at home. I can't say it is 100% for sure, but we'll find out tomorrow.
We still have a long road ahead of us. Ruby will have to come home with an adjusted carseat to make sure it will work with her head, everything we need to wrap her tumor, her heart medication, formula to add to my milk to get her more calories, and an apnea machine she'll need to be hooked up to when she's sleeping to monitor her oxygen saturation and heart rate.
We will need to keep her as germ free and protected as we can for a couple months. We hope you'll understand if we're not extending invitations for an open house to come visit us :)
Not sure yet what they'll have us do until the time of surgery is decided (which could be 6-12 months from now), but we'll find out more when pathology gets back to us and her ENT comes back in town.
So thankful for our babygirl, how strong she is becoming, and the LovePrayersSupport of all you lovlies. We wouldn't be able to handle this like we are without you!
Still no word from pathology. So while we wait, they figure we might as well be waiting at home. I can't say it is 100% for sure, but we'll find out tomorrow.
We still have a long road ahead of us. Ruby will have to come home with an adjusted carseat to make sure it will work with her head, everything we need to wrap her tumor, her heart medication, formula to add to my milk to get her more calories, and an apnea machine she'll need to be hooked up to when she's sleeping to monitor her oxygen saturation and heart rate.
We will need to keep her as germ free and protected as we can for a couple months. We hope you'll understand if we're not extending invitations for an open house to come visit us :)
Not sure yet what they'll have us do until the time of surgery is decided (which could be 6-12 months from now), but we'll find out more when pathology gets back to us and her ENT comes back in town.
So thankful for our babygirl, how strong she is becoming, and the LovePrayersSupport of all you lovlies. We wouldn't be able to handle this like we are without you!
Tuesday, March 26, 2013
VRE
No blog post yesterday because my computer died. Like, never to be resurrected type of died. Right now its at the computer doctor trying to have the hard drive salvaged. Hmmm...so, I guess it will be resurrected if they can put all my data onto the new laptop. Seems fitting for it to happen the week of Easter.
Which leads to me a more reverent experience I had today. My cousin sent me a text this morning that had an excerpt and a link to this LDS General Conference talk. I read the talk a few times, then thought about who would be watching over Ruby. I thought, what if that was real. Then I felt it was real. I pictured her cousin Naomi by her bedside. Grandpa Fetzer and Grandma Naomi and her twin sisters, Pearl and Ruby. Grandma Dorn. While I sit there holding babygirl I cried at the thought of those loved ones being so close, in a way that I don't understand. I can't say that I know that they are there, but I have faith that those family members are somehow watching over our Ruby.
It's especially comforting to think about when I have to leave Ruby to go back home and she is wide awake, laying (what I feel like is) all alone in her crib.
Since yesterday evening Ruby has taken all her feedings by a bottle, she is doing AWESOME! Let's hope she can keep it up and make bottle feeding the norm.
On the downside-As I sat holding Ruby on my chest I could hear the nurses talking "Yep, bed 2 has it too". Ruby is bed 2. She tested positive for VRE. It's a common bacteria we all have but the one she has is resistant to antibiotics and is commonly spread in a hospital setting. It has colonized in her body which means although its inside her, she has no symptoms so they won't treat it. But as long as she has it they will 'glove and gown' around her to keep it from spreading. I think this afternoon they moved her to a room with other babies who have it. Yay. Lame.
And this deserves a whole other post sometime, but a big fat thank you to my sister Liz. Today was the first time I've gone grocery shopping since Ruby was born, thanks to Liz's help. I also pre-paid for Siri's preschool because of donations Liz has helped gather. Love you Liz O.
This morning we split the girls up. Jane went to the neighbors (thank you, again, Ashley!) and Siri had some quality time with her Aunt Annie. I heard that they played dress ups and did play doh. Siri raved about it! As we put the girls to bed we asked Jane to say the prayer. As we all were kneeling by Siri's bed Jane starts "Tank oooo Fadder. Bessings..." She walks out of the room, comes back in and we're all still kneeling. She begins singing Twinkle Twinkle. Good prayer Janie, love ya.
Which leads to me a more reverent experience I had today. My cousin sent me a text this morning that had an excerpt and a link to this LDS General Conference talk. I read the talk a few times, then thought about who would be watching over Ruby. I thought, what if that was real. Then I felt it was real. I pictured her cousin Naomi by her bedside. Grandpa Fetzer and Grandma Naomi and her twin sisters, Pearl and Ruby. Grandma Dorn. While I sit there holding babygirl I cried at the thought of those loved ones being so close, in a way that I don't understand. I can't say that I know that they are there, but I have faith that those family members are somehow watching over our Ruby.
It's especially comforting to think about when I have to leave Ruby to go back home and she is wide awake, laying (what I feel like is) all alone in her crib.
Since yesterday evening Ruby has taken all her feedings by a bottle, she is doing AWESOME! Let's hope she can keep it up and make bottle feeding the norm.
On the downside-As I sat holding Ruby on my chest I could hear the nurses talking "Yep, bed 2 has it too". Ruby is bed 2. She tested positive for VRE. It's a common bacteria we all have but the one she has is resistant to antibiotics and is commonly spread in a hospital setting. It has colonized in her body which means although its inside her, she has no symptoms so they won't treat it. But as long as she has it they will 'glove and gown' around her to keep it from spreading. I think this afternoon they moved her to a room with other babies who have it. Yay. Lame.
Today was another day where I wanted to rip off the wires and make a run for it.
"Come on baby girl let's GO!" :)
And this deserves a whole other post sometime, but a big fat thank you to my sister Liz. Today was the first time I've gone grocery shopping since Ruby was born, thanks to Liz's help. I also pre-paid for Siri's preschool because of donations Liz has helped gather. Love you Liz O.
This morning we split the girls up. Jane went to the neighbors (thank you, again, Ashley!) and Siri had some quality time with her Aunt Annie. I heard that they played dress ups and did play doh. Siri raved about it! As we put the girls to bed we asked Jane to say the prayer. As we all were kneeling by Siri's bed Jane starts "Tank oooo Fadder. Bessings..." She walks out of the room, comes back in and we're all still kneeling. She begins singing Twinkle Twinkle. Good prayer Janie, love ya.
Sunday, March 24, 2013
While we wait
Me and babygirl this afternoon. She didn't eat well for me, but did for Mark the next feeding!
Both Mark and I thought Jane looked a little off in this dress. She's not typically a princessdressup type of gal, but it was a first that Siri let her wear this dress of hers.
We love the people who live in this house, and that they put up their new trampoline in the front yard :)
Saturday, March 23, 2013
accessories
Today I got to know one of my 'roommates'. It was good to talk to another mom and hear her experience, to know we're in the same boat, struggling but also seeing the miracles are babies are.
I had told the NNP that Dr.Grimmer would be out of town next week so between him gone and no news yet from the pathologist, surgery isn't sounding like it would happen in the next week. I asked about Ruby's PICC line and if we could take it out. Nurse Nancy used her New Jersey assertiveness and essentially got them to 'ok' taking it out. Thank you Nancy! I know she'll have to have another one eventually, but I'm glad to have that risk of infection out of her. One less tube to tangle! At one point today Ruby was without her PICC line and her ng tube. But alas, she is a sleepy head and the ng tube had to be put back in. It was great to see her smooth skin.
Mark swam with the girls at the JCC then went to be with Rubear while I walked around with the girls. I'm thankful for their health and happiness. They seem to be dealing really well with all of this. I am still aching for them to meet their sister though. If we do get to bring Ruby home for a few months, it will be nerve racking. Because her tumor is so large and could bleed easily, we are going to have to be very careful with her. We'll see.
I had told the NNP that Dr.Grimmer would be out of town next week so between him gone and no news yet from the pathologist, surgery isn't sounding like it would happen in the next week. I asked about Ruby's PICC line and if we could take it out. Nurse Nancy used her New Jersey assertiveness and essentially got them to 'ok' taking it out. Thank you Nancy! I know she'll have to have another one eventually, but I'm glad to have that risk of infection out of her. One less tube to tangle! At one point today Ruby was without her PICC line and her ng tube. But alas, she is a sleepy head and the ng tube had to be put back in. It was great to see her smooth skin.
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| Easter egg hunt with cousins this morning! |
Friday, March 22, 2013
Three weeks
So what's the news? What's new? How's Ruby?
No news, nothing new, Ruby is great :)
She is three weeks old today. Yesterday is the first time though I was reminded...she's not even to her due date yet! March 27th. I see her as just a normal newborn, but need to remember she was a month early. I've been cutting her more slack on working on her feeding lately :)
Ruby has 7 wires/tubes that I tend to tangle us up in every time I hold her. I'm getting better at untangling them, and not being all worried if I unplug them to set things right. I always end up staying with Ruby as long as I can, but usually she's snoozing when I leave so I can quickly say goodbye. But today, she was wide eyed and ready to be entertained. I went back to her crib and played a few videos from my phone of Siri and Jane so she could hear her sisters voices. I'd like to think it made her very happy.
Tonight we went over to a friendcousin's for dinner. It was fun to hang out and relax. We talked about planning a When Ruby is all better vacation celebration.
Tomorrow Siri has a soccer game and then we're going to an Easter egg hunt. We are getting a hang of our new schedule, spending part of our day at the hospital. I hope it doesn't last more than another week or two though! I'm thankful for Primarys and the doctors helping us to research and figure out what is best for our Ru.
No news, nothing new, Ruby is great :)
She is three weeks old today. Yesterday is the first time though I was reminded...she's not even to her due date yet! March 27th. I see her as just a normal newborn, but need to remember she was a month early. I've been cutting her more slack on working on her feeding lately :)
Ruby has 7 wires/tubes that I tend to tangle us up in every time I hold her. I'm getting better at untangling them, and not being all worried if I unplug them to set things right. I always end up staying with Ruby as long as I can, but usually she's snoozing when I leave so I can quickly say goodbye. But today, she was wide eyed and ready to be entertained. I went back to her crib and played a few videos from my phone of Siri and Jane so she could hear her sisters voices. I'd like to think it made her very happy.
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| the girls-March 2012 |
Tomorrow Siri has a soccer game and then we're going to an Easter egg hunt. We are getting a hang of our new schedule, spending part of our day at the hospital. I hope it doesn't last more than another week or two though! I'm thankful for Primarys and the doctors helping us to research and figure out what is best for our Ru.
Thursday, March 21, 2013
Thank you for lightening the load
There are benefits to having a baby in the NICU, one of them being that you get to see friends more often than you normally would. Either because they're taking care of your other kids so much, bringing you a gift to cheer you up, or just coming to say hi. Or like today, people who you've never met before bring you dinner. It's good.
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| Here is an edited version of Ruby and her tumor. |
We are still waiting and working on feeds, nothing new. I did ask Ruby's awesome nurse today, Angie, if I could switch physical therapists for Ruby. Now Barb is the one assigned to us and I'm thankful for her. She talks to me like a normal person and made me feel like I was doing things right!
I was gone much of the day today at the hospital. Mark met me up there and then before we went home to the girls we went for a walk at the park. It was nice to feel the sunshine and hold hands.
Most often I feel like I can't do my best at being a mom at home for Siri and Jane, or to Ruby at the hospital, or to Mark as a wife because there is just not enough of me. But today, I felt like I did my best and we were all happy. Although the quantity of time I spend with each member of my family is less, the quality sure is better. I listen intently as Siri tells me the happenings of the day, or as Jane whispers nonsense in my ear and snuggles in my lap.
I was gone much of the day today at the hospital. Mark met me up there and then before we went home to the girls we went for a walk at the park. It was nice to feel the sunshine and hold hands.
Most often I feel like I can't do my best at being a mom at home for Siri and Jane, or to Ruby at the hospital, or to Mark as a wife because there is just not enough of me. But today, I felt like I did my best and we were all happy. Although the quantity of time I spend with each member of my family is less, the quality sure is better. I listen intently as Siri tells me the happenings of the day, or as Jane whispers nonsense in my ear and snuggles in my lap.
Wednesday, March 20, 2013
better than a kick in the pants
Deep breath.
This isn't going to last forever.
I've been humbled. I'm thankful Heavenly Father helped me have a better attitude today. He could have given me a kick in the pants, a flat tire, the flu, whatever. Instead, I went to the usual NICU parent hour that is held every Wednesday at Primarys. Any parents of NICU babies come. We have lunch and there is a speaker or topic. At the end there is a chance for everyone to introduce themselves and say something about their baby. As I heard other parents stories I was humbled and thankful for my situation.
As I went back to Ruby I held her skin to skin and just lu hu huvvvved that little lady! I listed to the mom next to me talk to her baby, who was born Oct 31, 2012. She was telling the nurse, in a very upbeat happy voice, that she thinks her boy will be able to come home in 4-8 weeks. And she was psyched about it.
Wow.
I'm also thankful for a husband who is....I don't even know how to describe him. His actions speak louder than words. And as I have ups and downs, he listens.
Thank you peoples for the prayers, food, uplifting emails, blog/FB comments, and packages of sunshine.
p.s. this is our fav song the past few days
This isn't going to last forever.
I've been humbled. I'm thankful Heavenly Father helped me have a better attitude today. He could have given me a kick in the pants, a flat tire, the flu, whatever. Instead, I went to the usual NICU parent hour that is held every Wednesday at Primarys. Any parents of NICU babies come. We have lunch and there is a speaker or topic. At the end there is a chance for everyone to introduce themselves and say something about their baby. As I heard other parents stories I was humbled and thankful for my situation.
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| how I felt yesterday |
Wow.
I'm also thankful for a husband who is....I don't even know how to describe him. His actions speak louder than words. And as I have ups and downs, he listens.
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| today |
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| walk with the girls this morning |
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| Roo bear in her new crib |
p.s. this is our fav song the past few days
Tuesday, March 19, 2013
Jail break
disclaimer: I know things could be worse, but relative to what I've experienced, this is trying.
This NICU thing is a rollercoaster, but not in a fun let's-go-do-that-again type of way. More like a, I'm-up-and-so-happy wait now-I'm-down-and-so-discouraged type of way.
Today I was told that the pathologist who we assumed was currently looking at the biopsy is actually out of town all week. They didn't give me specifics but from what I gather, that would mean we wouldn't hear back from her until late next week. My face went blank. Do I cry? Am I angry? I think I'm disappointed? Can we just go now? Really, I just want to take Ruby and leave.
She is still working at getting stronger and improving at eating from a bottle. I didn't put too much effort into nursing because then if I wear her out she won't take a bottle at all. I'm fine just pumping and doing bottles if that will help her get home faster.
And then there was the part of the afternoon where the therapist came to visit. I was feeding Ruby a bottle. She gave me suggestions on how to help her stay awake and better positions to hold her. It was helpful. But then she got all knit picky about how Ruby's arm should be when she's feeding from a bottle and how it will help her coordination and strength blah blah blah! If you know me, I do not swear. I think swear words are ugly and generally unnecessary. I wanted to swear at her. Lady, I appreciate your efforts and I know this is your job, but if you'd just let me take her home I feel like she would develop just fine, and p.s. you have bad breath. Then she went on about moving Ruby to a crib so they could attach toys to it and do more things to stimulate her. You'd think I'd be excited about this, but I had an outburst of "no!"...to me a crib means she's going to be here a while longer. No way jose. Sorry for anyone named Jose.
I have to remember they are doing their best for her. She's a "hospital baby" (I hate it when they say that but its true). She doesn't have normal stimulation. It's just starting to drive me crazy about how exact everything has to be. I don't blame them, they have to have schedules, policies, etc...but I just don't want to be a part of it anymore.
After the therapist left I found myself humming songs close to Ruby's ear to block out the beeping of the monitors and crying of the other babies in the room. As tears came to my eyes, I whispered to our girl that she's strong, can do this, she has to do this. Please Ruby, please girlfriend.
Thank you blogging world for this space for me to vent.
This NICU thing is a rollercoaster, but not in a fun let's-go-do-that-again type of way. More like a, I'm-up-and-so-happy wait now-I'm-down-and-so-discouraged type of way.
Today I was told that the pathologist who we assumed was currently looking at the biopsy is actually out of town all week. They didn't give me specifics but from what I gather, that would mean we wouldn't hear back from her until late next week. My face went blank. Do I cry? Am I angry? I think I'm disappointed? Can we just go now? Really, I just want to take Ruby and leave.
She is still working at getting stronger and improving at eating from a bottle. I didn't put too much effort into nursing because then if I wear her out she won't take a bottle at all. I'm fine just pumping and doing bottles if that will help her get home faster.
And then there was the part of the afternoon where the therapist came to visit. I was feeding Ruby a bottle. She gave me suggestions on how to help her stay awake and better positions to hold her. It was helpful. But then she got all knit picky about how Ruby's arm should be when she's feeding from a bottle and how it will help her coordination and strength blah blah blah! If you know me, I do not swear. I think swear words are ugly and generally unnecessary. I wanted to swear at her. Lady, I appreciate your efforts and I know this is your job, but if you'd just let me take her home I feel like she would develop just fine, and p.s. you have bad breath. Then she went on about moving Ruby to a crib so they could attach toys to it and do more things to stimulate her. You'd think I'd be excited about this, but I had an outburst of "no!"...to me a crib means she's going to be here a while longer. No way jose. Sorry for anyone named Jose.
I have to remember they are doing their best for her. She's a "hospital baby" (I hate it when they say that but its true). She doesn't have normal stimulation. It's just starting to drive me crazy about how exact everything has to be. I don't blame them, they have to have schedules, policies, etc...but I just don't want to be a part of it anymore.
After the therapist left I found myself humming songs close to Ruby's ear to block out the beeping of the monitors and crying of the other babies in the room. As tears came to my eyes, I whispered to our girl that she's strong, can do this, she has to do this. Please Ruby, please girlfriend.
Monday, March 18, 2013
Thirty
I had a GREAT birthday today. Thank you for the love!!
Mark made crepes with nutella and strawberries..mmmm... We went for a walk (well, I walk, mark skates and the girls ride bikes) around the neighborhood. I spent the afternoon with Ruby and then Mark and I went back tonight while Liz watched the girls (and sadly Janie threw up while we were gone :( Oh how I wish I could snuggle up and sleep next to my Ruby Jane and Siri! I am very much looking forward to when Siri and Jane can meet their sister. 17 days old and they've still never seen her in real life.
While I was at the hospital this afternoon Dr.Grimmer came to visit. We unwrapped Ruby's gauze turban so he could see the tumor. His only news was that Ruby has stumped every doctor! ...and that we are still waiting to hear back from the pathologist. It may be later this week (as opposed to today or tomorrow like we thought).
The long story short is that it will be best if she can wait to have surgery. Ideally we will take her home for 6 months or so until she can grow. She may have to have a carbed instead of a carseat, we will have to give her her heart medication and know how to check her heart for signs of SVT, and will care for and change the dressing on her tumor 2x/day. But that will be so much better than having her live at the hospital!!!
If she's older for surgery she will have more blood volume and more neck muscle. I learned 2 things today that I didn't realize before.
1-during her biopsy she lost 25% of her blood volume (I thought it was 15%...still a lot either way)
2-they will have to remove most (if not all?) of her neck muscle because the tumor has grown into it. But if they wait until she is older she will most likely have more muscle that can be preserved. I haven't yet asked what the consequences and solutions are when take out that much of her neck muscle.
As for now we are trying hard to get her to take all her feedings by mouth (either nursing or bottle). She can't go home until she can do this. Its hard because they have her eat 2oz every 3 hours. No exceptions. If she doesn't eat by mouth they put it in her ng tube. Whereas if she were home with me, I'd nurse her every 3 hours (sometimes babies eat more one time and less another but it all evens out) and I would let her sleep as long as she wants at night. In turn I think she'd eat more during the day and still gain weight....but we have to do what the hospital says.
Thank you for bearing the burden with us during these crazy weeks of waiting. I have felt so much comfort and love.We feel very positive about things and are optimistic that whatever is decided, Ruby will be fine.
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| ruby's nurse made this for me |
While I was at the hospital this afternoon Dr.Grimmer came to visit. We unwrapped Ruby's gauze turban so he could see the tumor. His only news was that Ruby has stumped every doctor! ...and that we are still waiting to hear back from the pathologist. It may be later this week (as opposed to today or tomorrow like we thought).
The long story short is that it will be best if she can wait to have surgery. Ideally we will take her home for 6 months or so until she can grow. She may have to have a carbed instead of a carseat, we will have to give her her heart medication and know how to check her heart for signs of SVT, and will care for and change the dressing on her tumor 2x/day. But that will be so much better than having her live at the hospital!!!
If she's older for surgery she will have more blood volume and more neck muscle. I learned 2 things today that I didn't realize before.
1-during her biopsy she lost 25% of her blood volume (I thought it was 15%...still a lot either way)
2-they will have to remove most (if not all?) of her neck muscle because the tumor has grown into it. But if they wait until she is older she will most likely have more muscle that can be preserved. I haven't yet asked what the consequences and solutions are when take out that much of her neck muscle.
As for now we are trying hard to get her to take all her feedings by mouth (either nursing or bottle). She can't go home until she can do this. Its hard because they have her eat 2oz every 3 hours. No exceptions. If she doesn't eat by mouth they put it in her ng tube. Whereas if she were home with me, I'd nurse her every 3 hours (sometimes babies eat more one time and less another but it all evens out) and I would let her sleep as long as she wants at night. In turn I think she'd eat more during the day and still gain weight....but we have to do what the hospital says.
Thank you for bearing the burden with us during these crazy weeks of waiting. I have felt so much comfort and love.We feel very positive about things and are optimistic that whatever is decided, Ruby will be fine.
Sunday, March 17, 2013
So...
One time I met this boy and we fell in love. Like, a lot.
We were best friends and got married.
Now we have these three little girls and a home of our own and we are happy.
Before we left Grandma Carol and Papa John's house today, John had a song for us. We listened to it as we drove home through Brown's canyon and the sun was setting. I felt very thankful for Heavenly Father, for my life and everything around me.
We were best friends and got married.
Now we have these three little girls and a home of our own and we are happy.
Before we left Grandma Carol and Papa John's house today, John had a song for us. We listened to it as we drove home through Brown's canyon and the sun was setting. I felt very thankful for Heavenly Father, for my life and everything around me.
Saturday, March 16, 2013
I love my family
Went for a walk this morning for the purpose of exercising. The weather was perfect and it was nice be out and know it was ok for me to be active. The girls rode their bikes and Mark came too. We look forward to having Ruby go to the park with us!
Siri did AWESOME at her soccer game today. All smiles and did her best!
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| visit with Ruby today. This is Nancy who is Ruby's primary nurse. Nancy has been at Primarys for 30 years! |
and this gold nugget of a video gives you a glimpse of our Jane.
Friday, March 15, 2013
Two weeks
Loviegirl is 2 weeks old today!
This morning I didn't realize Sandy would be at the dr until about 9 (and I was having her watch siri and jane) and I needed to be at the hospital by then so I called my friend Angela who lives near her. She gladly took the girls and they actually stayed there most of the morning. Oh how thankful I am for her!! We used to be nursery leaders together in the ward when we lived with Milt and Sandy. That neighborhood is full of good people we miss.
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| her room is ready and waiting |
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| I hope that Ruby can be home for us to bless her in our ward, otherwise we can have her wear this beautiful dress (from my Aunt and cousin) at the hospital for a baby blessing |
Another big event today was that the Civic is finally registered (after watching for cops to pull us over since it expired last September)! Through Primarys they give NICU parents passes to the Jewish Community Center across the street. We took the girls swimming. It had been months since they'd been and they loved it.
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| ready to try out new swimsuits! |
What does that mean?
I need to be extra careful during these next few weeks to recover. The stitches are really strong, but as they disintegrate you have to be careful not to do anything to separate the incisions until they can heal and get strong on their own. It also means I can never go into labor again. ever. not ever. I've been reminded this 10+ times. If I did get pregnant again I'd have to deliver at 36/37 weeks by c-section. And if the placenta attached to the front of my uterus where the scar is, the placenta can grow into the scar and won't be able to come out with birth, which means I'd lose my uterus. I can hardly think past tomorrow, but let's just say we don't plan on having more kids anytime soon :)
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| THE badge-this has become a regular accessory for me and Mark |
Thursday, March 14, 2013
helicopter
Visited Ruby this morning and then took the girls, and Grandma Sandy, with me in the afternoon. The girls painted their hearts out and had hot chocolate at the hospital with Grandma while I held lil' Roo. Then Sandy went up to see Ruby while I took the girls over to the U to meet our friend Julie.
Julie is so cool.
She works one day at the U as a NBICU nurse and one day (24 hour shift) doing Air Med. Today wasn't busy so she gave us a tour of the helicopter they use. They just got it in December so its all shiny and new. Thank you Julie!
We got home late this evening. I was so tired and worn out from a great day and was thankful for the yummy food dropped off to us.
Julie is so cool.
She works one day at the U as a NBICU nurse and one day (24 hour shift) doing Air Med. Today wasn't busy so she gave us a tour of the helicopter they use. They just got it in December so its all shiny and new. Thank you Julie!
ruby this morning.
her gauze wrap was more of a silly hat today. she looks plump,
but don't let it fool you. she's lost weight the last 3 days and is back to her birth weight.
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| snoozin on the way to primarys |
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| look at all the buttons! toddlers dream come true |
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| awesome view |
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| check out janes pig nose |
Wednesday, March 13, 2013
You can't always get what you want
As I sat thinking about what I could title this post the Rolling Stones song came into my head...
Oh, you can't always get what you want
But if you try sometimes you just might find
You get what you need
and like my mom reminded me...if you pray for the doctors to do their best and know how to help Ruby (which I do), you have to accept what they are trying to do.
So Dr.Grimmer called today and said what I wasn't surprised to hear, I just was hoping to hear something else.
They don't have the biopsy results. They are sending them to one of the best doctors in the world, his words not mine, who specializes in soft tissue tumors in children. She is across the country so it probably won't be until early next week that we find out anything else. They do know that the tumor has 3 main blood sources, all of which are large and substantial (not awesome). If they did surgery they would want to try to embolize some of the veins/arteries a week before and once more before surgery.
BUT
If this is a type of tumor that is benign and won't grow much in relation to how much she'll grow, they think it would be best to wait until she is 6 months old or so so that she will have more blood volume and be able to tolerate surgery better.
oy vey
I spent a great afternoon at the hospital. Went to the NICU parent hour, did more financial stuffnthings, gave Ruby a 'bath', and had a couple cheerful visitors. Ruby has lost some weight. She used to be over 7lbs but is 6lb 13oz today so the nurse talked about maybe adding a powder to my breastmilk to get her more calories without having to feed her more. She's doing pretty good though, eating about half her feedings from a bottle (and the rest through her tube). While giving her a bath the nurse rewrapped her gauze. I hadn't seen her tumor since she was born (by my own choice) and finally looked at it. Honestly, its not pretty. It scares me. I feel so helpless and wish I could make it all better. Her hair sure is cute though.
I came home to cheerful girls who I could tell had had sunshine on their faces. It made me so happy to hear all about their play outside today. My mom was cleaning the kitchen, and dinner got delivered soon after. Mark is with roo bear now for their daily snuggle session.
Oh, you can't always get what you want
But if you try sometimes you just might find
You get what you need
and like my mom reminded me...if you pray for the doctors to do their best and know how to help Ruby (which I do), you have to accept what they are trying to do.
So Dr.Grimmer called today and said what I wasn't surprised to hear, I just was hoping to hear something else.
They don't have the biopsy results. They are sending them to one of the best doctors in the world, his words not mine, who specializes in soft tissue tumors in children. She is across the country so it probably won't be until early next week that we find out anything else. They do know that the tumor has 3 main blood sources, all of which are large and substantial (not awesome). If they did surgery they would want to try to embolize some of the veins/arteries a week before and once more before surgery.
BUT
If this is a type of tumor that is benign and won't grow much in relation to how much she'll grow, they think it would be best to wait until she is 6 months old or so so that she will have more blood volume and be able to tolerate surgery better.
oy vey
I spent a great afternoon at the hospital. Went to the NICU parent hour, did more financial stuffnthings, gave Ruby a 'bath', and had a couple cheerful visitors. Ruby has lost some weight. She used to be over 7lbs but is 6lb 13oz today so the nurse talked about maybe adding a powder to my breastmilk to get her more calories without having to feed her more. She's doing pretty good though, eating about half her feedings from a bottle (and the rest through her tube). While giving her a bath the nurse rewrapped her gauze. I hadn't seen her tumor since she was born (by my own choice) and finally looked at it. Honestly, its not pretty. It scares me. I feel so helpless and wish I could make it all better. Her hair sure is cute though.
 |
| uhhh, yeah. not interested in nursing. at all. |
I came home to cheerful girls who I could tell had had sunshine on their faces. It made me so happy to hear all about their play outside today. My mom was cleaning the kitchen, and dinner got delivered soon after. Mark is with roo bear now for their daily snuggle session.
 |
| grandma, the girls, and sam biked to the park |
Tuesday, March 12, 2013
Propranolol and the neurosurgeon
My stars little Ruby, don't you scare us like that.
The more you know the better. Or sometimes the more you know the better you are at worrying :)
Ruby is doing good today. Still very sleepy, but oh so snuggly. After the NICU called last night Mark went up to check on our Roo. He came home and we both slept well (especially after calling at 5 & 8am check on her).
We dropped the girls off at the zoo with Trish and Krista and headed to the hospital. After I chatted with someone at the U about medical bill shizzle, I was walking down the hallway as I called the neurosurgeon who had just left me a message and just about ran into him, literally. Dr Brockmeyer and I talked about surgery possibly Thur or Friday. He said "we have our hands full"...that was a big statement to me coming from a neurosurgeon :) He and Dr.Grimmer (the ENT) have much to discuss and will do their best to make a plan. He told me it may not work the first time...they may have to take a different approach depending on how much she bleeds. Ideally it would all get done in one surgery, but it may take many. Again, more of "we're not sure", which we are used to. I'm just bracing myself for surgery, and have to understand it could go multiple directions. We will pray pray pray they can get a clean place to work between the surface of her skull and the tumor.
I said a quick hi to Ruby then off to pump (sometimes I forget to pump every 3 hours since that girlfriend isn't with me to remind me). Ruby is on a medication called propranolol which will regulate her heart. She'll be on it for the next 6 months and will hopefully grow out of needing it. The cardiologists aren't too concerned. One of the reasons I was so worried last night was that I know SVT can lead to fluid around the heart and heart failure. Luckily the more we learned today the better we feel about things. Today her nurse is Janet from our old ward (in Mark's parents neighborhood). She gets Ruby all to herself :)
Mark erased the previous picture on Ruby's board and did this little number today. We love our Roo!
Then our gem of a friend brought Cafe Rio to the hospital, thank you my dear. After picking up the girls, Jane went down for a nap and Siri and I drew on the driveway in the sunshine. A beautiful afternoon.
The more you know the better. Or sometimes the more you know the better you are at worrying :)
Ruby is doing good today. Still very sleepy, but oh so snuggly. After the NICU called last night Mark went up to check on our Roo. He came home and we both slept well (especially after calling at 5 & 8am check on her).
We dropped the girls off at the zoo with Trish and Krista and headed to the hospital. After I chatted with someone at the U about medical bill shizzle, I was walking down the hallway as I called the neurosurgeon who had just left me a message and just about ran into him, literally. Dr Brockmeyer and I talked about surgery possibly Thur or Friday. He said "we have our hands full"...that was a big statement to me coming from a neurosurgeon :) He and Dr.Grimmer (the ENT) have much to discuss and will do their best to make a plan. He told me it may not work the first time...they may have to take a different approach depending on how much she bleeds. Ideally it would all get done in one surgery, but it may take many. Again, more of "we're not sure", which we are used to. I'm just bracing myself for surgery, and have to understand it could go multiple directions. We will pray pray pray they can get a clean place to work between the surface of her skull and the tumor.
I said a quick hi to Ruby then off to pump (sometimes I forget to pump every 3 hours since that girlfriend isn't with me to remind me). Ruby is on a medication called propranolol which will regulate her heart. She'll be on it for the next 6 months and will hopefully grow out of needing it. The cardiologists aren't too concerned. One of the reasons I was so worried last night was that I know SVT can lead to fluid around the heart and heart failure. Luckily the more we learned today the better we feel about things. Today her nurse is Janet from our old ward (in Mark's parents neighborhood). She gets Ruby all to herself :)
 |
| this is what our view is whenever we hold Ruby |
 |
| warmy skin to skin |
Mark erased the previous picture on Ruby's board and did this little number today. We love our Roo!
Then our gem of a friend brought Cafe Rio to the hospital, thank you my dear. After picking up the girls, Jane went down for a nap and Siri and I drew on the driveway in the sunshine. A beautiful afternoon.
 |
| mark and janet |
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