Ed/Bump Update Week 16

Whoops, sorry for the delay. I had most of this written and then forgot to post it. Yesterday kind of got away from me...

So, not great news this week. Ed had another set back and is back at Stanford Hospital receiving IVIG treatments. We still don't know why he has these waxing and waning symptoms, and the doctors don't seem to have a great idea either. All he can do as the patient is get through the treatments and hope that one of these times they stick. They may set up a schedule of treatments that gets Ed through so he can recover. There's a lot of speculation about what is going on. Ed is doing his best to keep up good spirits about it but he's pretty frustrated as you can imagine. He's ready to be better and able again.

Symptom wise, he's lost a lot of the gains he made with the plasmapheresis and we've also lost function of both sides of his face now so his speech is a little garbled. All in the course of maybe 3 days. He's pretty skinny. One of the tie ins with GBS is an increased metabolism apparently.

The IVIG really helped his face before, unlike the plasmapheresis, so fingers crossed that comes about again.

I want to reiterate to everyone that Ed will be ok. We're in the weeds now, but the prognosis is still really good and he will come around. He will walk, climb stairs, regain his facial expressions... That's what all the Dr's say, all the websites, and all the papers... Right now it's just about having faith in his body, the treatments, and waiting out this roller coaster ride. Please keep reaching out and remember, you don't have to talk about his health, just hearing about what you are up to helps to take his mind off things. Being back in the hospital is no fun and he doesn't have physical therapy to break up the day. So if you have a moment during your day and, a random thought pops into your head, reach out to him. :)

On my end, I'm holding up ok aside from a killer cold that crept in right as my mom left to see my sister on Monday. Nothing dire, normal cold stuff (nose, head, throat) and low grade fever, just supremely inconvenient and uncomfortable as you can imagine. I'm glad my favorite shows are finally starting up. I've been needing some laughter and distraction in TV and good music - thank goodness for Spotify.

My 16 week appt at the Dr's went well. Baby's heartbeat is strong and I'm on the right track. Still have homework to eat more and try to get and stay well, but truly, all is ok. All is good in babyland. I'll try to get a picture inserted here later, but odds are I won't have a good one until I go visit Ck in CO this weekend and she or mom can snap one. I'm pretty excited for my niece to get here so I can start teaching her to sing asap :)

I'm longing desperately for the holidays. Maybe it's all the pumpkin-food talk or just missing friends and family, but I just wish it were holiday season.

Now for the bump update figures....

How far along? 16 Weeks

How Big Is Baby? An avocado

Sleep: Amazingly, it's the one thing that soothes my occasional back pain so I'm getting as much of this as I can.

Best moment this week: Bustin' out the maternity jeans I bought and having the Dr. say that I gained a little weight. Finally!

Movement: Still too tiny. 

Symptoms: Back pain right around my hips.

Food cravings/aversions: Apparently, for the first time ever in my life, stress makes me not want to eat. So my aversion? All food - when I'm stressed out. Of course I'm still eating, Dr's orders, but boy is it hard when nothing sounds good. 

Gender: tbd

Belly Button in or out? In

What I miss: Beer I suppose! And wine. The other night was filet mignon for dinner - cooked 'well' which breaks my heart (normally I like it mooing). Had that with a nice glass of orange juice. Travesty.

What I am looking forward to: Looking pregnant. Right now I just feel silly telling people I'm expecting and they immediately look at my 'beer belly.'

Funny moment of the week: Mom going to BuyBuyBaby with me and after walking around for a moment, deciding she could just leave the job of picking things out to Carolyne. I completely agree. Ck you have your marching orders :)

Labor Signs: Ha.

Weekly Wisdom: Be grateful for what you have because it can all change so quickly. And when they do, try to just roll with the change. No expectations, just be present. 

Milestones: Breaking in the maternity jeans and stepping into a Buy Buy Baby for the first time. Talk about overwhelming and a reality check. 700 dollar strollers? No thank you, I'm not insane. I miss my doing my wedding registry, when it was a question of what pan makes the crispiest loaf of bread - not car seats, you know, things that directly decide the life or death of a tiny human.

Ed/Bump Update - Week 15

It was an exciting week! Mom flew in again and is here supporting the troop. Ed was moved up to Stanford for a second opinion. He's feeling so much stronger and looking happier, fidgeting around as much as he can. This last round of treatments have had a big impact. We're really looking forward to the next steps: moving back to rehab for a few weeks and then moving him back to home and continuing on the path to recovery. Please keep reaching out to him, it really helps keep him connected to life outside of the hospital. The best thing this week? Ed stood up! Without assistance or holding on to a walker or wheelchair! So wonderful. It's the first time he's stood on his own since August 7th. This process is slow, but it is thrilling when we get to those milestone moments. 

Now for a bump update!

How far along? 15 Weeks

How Big Is Baby? A navel orange

Sleep: Crazy. Crazy. Dreams. Living in the Great Depression. Plagues. Being in high school again. Aliens. Winter in Russia. Though I did have one featuring Alexander Skarsgard that is welcome to return!

Best moment this week: Mom coming in for a second visit :) 

Movement: Still too tiny. 

Symptoms: Increased hunger and fatigue. Everything else seems about normal.

Food cravings/aversions: Still feelin' the orange situation. Aversions? Chinese food... namely stir fry. Everytime I hear the word it makes me a little queasy. 

Gender: tbd

Belly Button in or out? In

What I miss: Sushi. Namely saba. I could really go for about 20 pieces of that right now.

What I am looking forward to: Feeling the baby and starting to look like a pregnant lady. I'm ready for that belly!

Funny moment of the week: Mom and I were riding in the elevator in Stanford's hospital and I noticed the permit had one section circled in red. It read: "Expiration Date: 4/15/12" or something close. I laughed and told mom. Immediately, the elevator started to shake violently. We stopped laughing and haven't taken the elevator there since. Best not to tempt fate. 

Labor Signs: Ha.

Weekly Wisdom: Once again, try to release expectation. Things will happen as they are meant to happen, worrying about it doesn't help anything.

Milestones: Ed standing :) That is enormous. Also, while I do not look or feel pregnant, I can no longer wear my 'skinny Carly' jeans without the assistance of a rubber band. :)

And now for some pictures of mom's visit so y'all can be envious of her new retired life. (Some of these are from her previous visit that I've just recently yoinked from her phone):

Sad pregnant lady sitting out the fun at the beer garden.

Mom 'enjoying' our brisk salt water pool

A little preview of how I'm styling the nursery.... Swedish explosion! (EDIT: This is not the nursery, this is the Ikea display room with a crib in it that inspired my nursery)

What is a trip to Ikea without some meatballs!

Visiting Half Moon Bay. Had to get mom some beach time!

Notice all the fog rolling in... really took over!

Fog dancer :)

Celebrating the first official day of Mom's retired life! Champagne was absolutely necessary.

Visiting Ed at Stanford, playing in the trees!

Ed/Bump Update - Week 14

Ed is doing better. The new treatment seems to be having a bigger, positive impact on his strength. The other symptoms are in a holding pattern. He has been moved out of the ICU which is fantastic, and is now in a regular room. Hopefully, he won't be in that room for long and he'll be on his way back to the rehab facility. I was telling my mom today, it's so frustrating because unlike so many other issues that require rehab, Ed truly cannot "work" through it. It's not a matter of his determination or will or strength - it's just time. You see so many people go to rehab and through 'hard work' they get better or get released quicker. In our case, 'hard work' would probably have the reverse outcome. Ed just needs the support to make it through these long, waiting days. He will get better, he will regain a normal, productive life, just not on a schedule of his choosing. All of us that know him, know how much he likes to give things his all, so I ask you to just keep cheering for him as he waits this out. Texts, emails, phone calls, visits... it all helps so much. :)

(I'll try to add a picture when I'm with someone with a camera, but I'm not looking much different)

How far along? 14 Weeks - hellllloooo second trimester!

How Big Is Baby? Lemon

Sleep: I cannot get enough of this. I'm suddenly beset by unending fatigue.

Best moment this week: Celebrating our anniversary! Time has just flown by... I can't believe it. A year ago we were on our way to Palm Island for our honeymoon. 

Movement: Too, too early. 

Symptoms: Along with the new bout of fatigue, my dizziness is back. It makes me want to lay down all the time, so that coupled with the fatigue, equals a very lazy Carly.

Food cravings/aversions: Cravings - oranges. I plowed through a big bottle of juice and followed it up with three whole oranges. I'm an animal for oranges! No real aversions currently. 

Gender: tbd

Belly Button in or out? In

What I miss: Red wine. Dad and Debbie were just here and every time they poured a glass I looked at it longingly. I'd love to go tour wine country right about now!

What I am looking forward to: This continuing resurgence of my appetite, with it hopefully expanding to things other than oranges.

Funny moment of the week: This may sound terrible, but when Ed was in the ICU we kept hearing them announce "Code: Brain Attack!" Without looking it up, we decided it was more light hearted to imagine these cartoon-y brains invading the suite, stomping around to attack people at ankle height. 

Labor Signs: Ha.

Weekly Wisdom: Try not to have too many expectations, it just leads to a lot of unnecessary worry. Re - when Ed will get out, lack of weight gain/whether I'm eating enough, what the future holds.

Milestones: Our anniversary, Ed moving out of the ICU, the second trimester? It's been a big week apparently!

Ed/Bump Update - Week 13

First things first, Ed update. We've had a little bit of a setback, but nothing is tragic. He is no longer at rehab and has been re admitted to the hospital for another round of treatments because it looks like the first didn't take completely. Ed noticed this weekend he was feeling weaker again so they moved him back last night. We're at a new hospital with new doctors, Good Samaritan, and in a new type of room in their Neuro ICU. It's a little... intimidating. So far they're estimating at least a week, and if all goes well we should see some results quickly. Ed's pretty disheartened but tries to remember that in the long run the prognosis is still really good. Full recovery. It just takes so much time and is so very slow. So, if you get a chance, reach out to him with a joke or a word about your normal, non-hospital life. It makes a world of difference.

Now for a little Bump Update:

How far along? 13 Weeks, super early I know but I think I'm finally starting to show... mostly looks like I'm slouching and have a beer belly.

How Big Is Baby? A 3 inch peach. Little alien!

Sleep: Pretty normal but now with endless hours with the Dr and the ER, it can make it hard to keep on top of eating and sleeping. I'm looking forward to having a new schedule set again.

Best moment this week: It wasn't my moment, but my mom had her retirement party with her students and it looked like a huge blast. I'm so glad she got to see how appreciated and valued she is! 

Movement: The sites say the baby is movin' around but it is tooooo tiny to feel.

Symptoms: Nausea, fatigue, and a new one! Ridiculously emotional. "I'm not really crying, it's just the baby" is a common refrain.

Food cravings/aversions: Cravings - fried chicken. Aversions - pretty much everything else until I'm starving and then I'll probably eat some of it. 

Gender: I really feel like it will have a gender... I've got a strong feeling about that :)

Belly Button in or out? In

What I miss: Enjoying food and not struggling with finding something to eat every 2 hrs.

What I am looking forward to: Ed getting settled and my Dad visiting this weekend!

Funny moment of the week: There weren't really any funny moments aside from watching Too Cute episodes on Animal Planet. That show makes my night every Saturday. Talk about a little ray of sunshine on tv.

Labor Signs: Ages away from now.

Weekly Wisdom: Buy a mom bag. Pack snacks. Copious amounts of snacks.

Milestones: Getting to tell everyone in the last post. I was so excited to announce and I knew it would be good to have some happy news out. Hard news can suck the life out of you, but nothing is more rejuvenating than loving, celebratory messages. 

Checking in again

Hi all. Just wanted to give you a quick update on where things are....

Ed is currently in a nearby rehab facility. Yay for finally being out of the hospital! (Don't get me wrong, the hospital was really nice and attentive and there are no complaints there, it's just, it's a hospital). He will be there for an extended stay, we're hoping he will be home by early September, but it's not something we can rush. He works multiple hours a day with several therapists on getting back to walking. It's tiring and hard, but he's been a real fighter about all of this.

My mom actually came out! It was a huge surprise. She texted me a few hours before her flight and next thing I knew she was there in the morning.  Ed was afraid Mom was going to be 'mean to him' with all of her exercises and equipment. For those who don't know, my mom is a fitness guru, with her own business that she is just now winding down after 20+ years. So she is certainly an expert on helping people rehab and better their physical state. Ed was right to be nervous - but it's all out of love! :) We've been very lucky to have both Debbie and Mom come out and help so much. We've had many, many offers of help from family, friends and co-workers, and it has just been so wonderful. I can't tell you how much we appreciate all the well wishes and positive energy. His co-workers and boss visit often and that couldn't be nicer.

Mom and I have been rearranging the apartment to make it easier for Ed to move around when he comes home. Walker/Wheelchair friendly. Just have to get him prepared for that first flight of stairs to the apartment.

I am well - tired and missing having Ed here at home, but I know he's making progress and that in time he will be here again. I get a little down, but thankfully, with so many people checking in, it's hard to stay down for long.

The updates with be infrequent - with him now in rehab it will be more of the same for awhile. Please reach out to him if you would like to cheer him on or send him jokes or harass him. The days in the rehab facility can be long, tiring and repetitive, so anything to break up the monotony is hugely appreciated. If you need information about how to reach him, please contact me privately.

What's Going On With Us.

Hey everyone. My apologies for not updating more. This time I have a pretty good reason for being so AWOL. So, I'll give you a very brief rundown of what is going on. I know there are a lot of friends who would like to know what's happening.

Ed was recently diagnosed with Guillian-Barre Syndrome. So. He's in the hospital but, he is OK. The prognosis is good. There is nothing wrong with his mind, it's just his body not doing what it should be doing. Like walking and smiling and sending correct sensory information. He's been in the hospital since Wednesday the 7th and we are waiting to see how much longer he will be there. Without treatment, the disease can progress to a complete paralysis - including the respiratory functions, leading to death. Like the article in the link says, there is no cure, you just have to wait for it to run it's course while getting treatments, and then you can recover fully afterwards. He is being treated and so far, everything is in a holding pattern. His breathing is just fine.

I spend the nights at the hospital with him and usually only go home midday for lunch time and some chores. Unfortunately, I haven't trained the cats to do all the housework yet... I'm working on it. :) We're both trying to be light-hearted and to remember that this just has to do whatever it's going to do and then things can start moving back to normalcy.

Debbie came out and provided invaluable support so I want to make sure she knows how grateful we are for the help! We really appreciate all the offers of help we've received, from family, friends and co-workers - and there have been many. We're touched, truly.

If you would like more information, you're welcome to reach out to me with questions. Ed does have his phone and does text and email if you'd like to send him encouragement or any words of kindness or jokes. The treatments and noisy nights at the hospital make him quite tired so if you reach out to him I implore you to keep it upbeat.

Forgive us both if we are forgetful or negligent about responding in a quick manner, or if our responses are brief. This schedule has both of us a little sleep deprived and out of it so sometimes it takes a bit to get all the ducks in a row.

So to summarize. Ed is in the hospital for now. We are both as ok as possible. He will recover it's just a matter of time.

Here's hoping you are all well out there in the world