Update... Long.
Sept 16, 2015 10:06:11 GMT -5
Post by trixi282 on Sept 16, 2015 10:06:11 GMT -5
I'll try to do a TL:DR at the end... but my goodness life has been crazy the last few weeks....
The other day I literally wrote a caring bridge update in word (our internet was out) and it was 2.5 pages long... I'll spare you all of those details and try to summarize a bit of that.
House:
Things are going well and we got the living room (formerly wall paper) and kitchen painted and it looks loads better. We got new light fixtures in our family room so we can actually see now, and we've moved the toys into the 4th bedroom instead of the family room and already I'm happy about that change. My H talked me into buying a new sofa and chairs for the family room... we went looking for end tables and came out having ordered 2 end tables, a coffee table, 2 chairs, a sofa.... and took home with us a small shelf (that I loved and it was on closeout) that I've put in the dining room so far.
Organization is coming along, and I feel like we're finally starting to get in a groove with Emmeline's equipment and feeding stuff...
Emmeline:
She's doing surprisingly well, loooooong stories short: She's been diagnosed with Horner Syndrome, which is a nerve disorder that affects the eyelid and pupil dilation. She has a minor case, but we will be having her go through yet another MRI to check for anything (tumor) that might be causing it. Her Ophthalmologist is almost certain it was caused by trauma from one of her surgeries (ECMO or chest/lung surgery) but the surgeon isn't convinced.... ok. She was going to have scans done anyway for Hematology/Oncology follow-up anyway, so we'll do them together to lessen the tramatic experience and # of appointments, just to be sure.
Overall she's healing well from her g-tube surgery and she's adjusting fairly well to that.... but is fighting taking a bottle like we're trying to drug her. After an evaluation with the specialists (speech, occupational therapy, and nutrition) they all agreed that therapy would help. She starts therapy next Tuesday and she'll go twice a week... She also has a swallow study scheduled next week (Thursday). After the swallow study we might know more about her physiologically so they can work with her on all ares she needs to get her to eat...
Joey:
She's doing well - she's now loving daycare/preschool... she still has some bad drop offs, but I think the fact that Emme goes too has her a lot happier at drop off these days. I don't get the drop off issues, she adores her teachers and talks about them all the time, and she never wants to leave at the end of the day! Weirdo. She starts Gymnastics on Monday and is so super excited! Then next Saturday she starts swim lessons and all she talks about is wearing her swim suit... silly kid.
Other:
H started a new job 3-ish weeks ago, and it's going well. Last week was the first week of his "real" schedule" and it's already wearing on me... but I know for the time being it will be best. He'll be able to take Emme to her therapy appointments in the mornings before work which means neither of us have to take PTO to take her! HUGE relief.
I did cut back my hours to 30/wk, but I think I'll have to go back up to 40 already, or at least try to keep working 40 becuase financially we'll be beyond tight if i only work 30.
Emme and I are going to be famous soon... well locally... ok not famous, but the hospital requested to write about our story and put it in the health newsletter/online. We have a photoshoot on Friday at the house so they have a picture to include with the article... It was written the last week Emme was in the hospital - so I'm not sure if the writer included her discharge stuff that I sent her last minute, but either way, we're being used (haha) to help promote the MFM clinic, the NICU, and the hospital; focusing on how all the services work together to help mommies and babies in complex situations.
We were also asked to join in on an event at the hospital this weekend, but I called the lady back and left a message and never heard back from her. It's ok though because we have tons going on right now anyway.
I know some people are going through worse things in their lives, but I'm exhausted... mentally, physically, emotionally... with H working late, I feel like when I get home and finally get food prepared (even if it's only sandwiches) by the time we're done eating, it's time for the girls to go to bed, and I barely even pay attention to Emmeline because I'm trying to feed and wrangle Joey for 2 hours, and trying to keep her from stepping on Emme.
You guys, she literally stepped on Emme's stomach the other day, we didn't see it, but the way she said she did it was like a stomp and I felt horrible. Poor thing screamed, and we of course yelled at Joey, then I had to calm down and talk to her about why that's not nice, but especially bad for her.... I am trying to be sure to pay enough attention to Joey so she doesn't feel excluded or left behind with all that Emme has going on - but then I feel like I'm neglecting Emmeline and not giving her attention... Mom x2 is hard, especially with all these appointments!
I miss being on here all the time, but now that I've officially transferred departments at work (to the local office) I am trying to pick up work/projects here and learn their ways. It's the same company but a WAY different work-style and than I'm used to since they're a lot smaller here.
Anyway I'm rambling now, and I feel like there were so many other things I've wanted to share with you guys and then I never get a chance to get on here to do it... so now I forget.
If you did read all of this you deserve a milkshake... or cookies... or wine... or all of the above!
TLDR: umm... emme is good but going to 18659301 appointments this month, she has Horner Syndrom in her right eye, likely caused my her surgeries and trauma to nerves, but not sure. She is starting therapy soon for her feeding issues.
Rest of family is good, but very busy. H has a new job with weird hours and it's already wearing on me, I'm good though - just exhausted. Handling things pretty well, but need a break! Had an article written about my pregnancy and Emmeline's journey - should be 'published' soon.
I miss being on here, and feel like I've missed so much! Love you guyz!
The other day I literally wrote a caring bridge update in word (our internet was out) and it was 2.5 pages long... I'll spare you all of those details and try to summarize a bit of that.
House:
Things are going well and we got the living room (formerly wall paper) and kitchen painted and it looks loads better. We got new light fixtures in our family room so we can actually see now, and we've moved the toys into the 4th bedroom instead of the family room and already I'm happy about that change. My H talked me into buying a new sofa and chairs for the family room... we went looking for end tables and came out having ordered 2 end tables, a coffee table, 2 chairs, a sofa.... and took home with us a small shelf (that I loved and it was on closeout) that I've put in the dining room so far.
Organization is coming along, and I feel like we're finally starting to get in a groove with Emmeline's equipment and feeding stuff...
Emmeline:
She's doing surprisingly well, loooooong stories short: She's been diagnosed with Horner Syndrome, which is a nerve disorder that affects the eyelid and pupil dilation. She has a minor case, but we will be having her go through yet another MRI to check for anything (tumor) that might be causing it. Her Ophthalmologist is almost certain it was caused by trauma from one of her surgeries (ECMO or chest/lung surgery) but the surgeon isn't convinced.... ok. She was going to have scans done anyway for Hematology/Oncology follow-up anyway, so we'll do them together to lessen the tramatic experience and # of appointments, just to be sure.
Overall she's healing well from her g-tube surgery and she's adjusting fairly well to that.... but is fighting taking a bottle like we're trying to drug her. After an evaluation with the specialists (speech, occupational therapy, and nutrition) they all agreed that therapy would help. She starts therapy next Tuesday and she'll go twice a week... She also has a swallow study scheduled next week (Thursday). After the swallow study we might know more about her physiologically so they can work with her on all ares she needs to get her to eat...
Joey:
She's doing well - she's now loving daycare/preschool... she still has some bad drop offs, but I think the fact that Emme goes too has her a lot happier at drop off these days. I don't get the drop off issues, she adores her teachers and talks about them all the time, and she never wants to leave at the end of the day! Weirdo. She starts Gymnastics on Monday and is so super excited! Then next Saturday she starts swim lessons and all she talks about is wearing her swim suit... silly kid.
Other:
H started a new job 3-ish weeks ago, and it's going well. Last week was the first week of his "real" schedule" and it's already wearing on me... but I know for the time being it will be best. He'll be able to take Emme to her therapy appointments in the mornings before work which means neither of us have to take PTO to take her! HUGE relief.
I did cut back my hours to 30/wk, but I think I'll have to go back up to 40 already, or at least try to keep working 40 becuase financially we'll be beyond tight if i only work 30.
Emme and I are going to be famous soon... well locally... ok not famous, but the hospital requested to write about our story and put it in the health newsletter/online. We have a photoshoot on Friday at the house so they have a picture to include with the article... It was written the last week Emme was in the hospital - so I'm not sure if the writer included her discharge stuff that I sent her last minute, but either way, we're being used (haha) to help promote the MFM clinic, the NICU, and the hospital; focusing on how all the services work together to help mommies and babies in complex situations.
We were also asked to join in on an event at the hospital this weekend, but I called the lady back and left a message and never heard back from her. It's ok though because we have tons going on right now anyway.
I know some people are going through worse things in their lives, but I'm exhausted... mentally, physically, emotionally... with H working late, I feel like when I get home and finally get food prepared (even if it's only sandwiches) by the time we're done eating, it's time for the girls to go to bed, and I barely even pay attention to Emmeline because I'm trying to feed and wrangle Joey for 2 hours, and trying to keep her from stepping on Emme.
You guys, she literally stepped on Emme's stomach the other day, we didn't see it, but the way she said she did it was like a stomp and I felt horrible. Poor thing screamed, and we of course yelled at Joey, then I had to calm down and talk to her about why that's not nice, but especially bad for her.... I am trying to be sure to pay enough attention to Joey so she doesn't feel excluded or left behind with all that Emme has going on - but then I feel like I'm neglecting Emmeline and not giving her attention... Mom x2 is hard, especially with all these appointments!
I miss being on here all the time, but now that I've officially transferred departments at work (to the local office) I am trying to pick up work/projects here and learn their ways. It's the same company but a WAY different work-style and than I'm used to since they're a lot smaller here.
Anyway I'm rambling now, and I feel like there were so many other things I've wanted to share with you guys and then I never get a chance to get on here to do it... so now I forget.
If you did read all of this you deserve a milkshake... or cookies... or wine... or all of the above!
TLDR: umm... emme is good but going to 18659301 appointments this month, she has Horner Syndrom in her right eye, likely caused my her surgeries and trauma to nerves, but not sure. She is starting therapy soon for her feeding issues.
Rest of family is good, but very busy. H has a new job with weird hours and it's already wearing on me, I'm good though - just exhausted. Handling things pretty well, but need a break! Had an article written about my pregnancy and Emmeline's journey - should be 'published' soon.
I miss being on here, and feel like I've missed so much! Love you guyz!
I know a little bit about your past that you shared, and truly, it's ok if you need to breakdown and have a good cry over this stuff. We are here for you. This is some hard stuff. Emme is going to be ok. She has made it thru the woods now. She is still going to have some hurdles ahead, and you will get thru those too. But you kept her ALIVE. You brought her safe into this world and she is going to make it. YOU did that. You are strong even if you have to have a good cry now and then. Remember that when you are down. 
