Saturday, January 30, 2010

Settling In

We've been home for what almost a month I guess. We came home 1/1 and here it is 1/30. Wow. I'm just now feeling like I'm back in a groove. And we were "only" gone 2 weeks!

The first week I was off of work and trying to stay sane. Mary still needed a lot of care and so did Robert. Emotionally he was really struggling.

The next 2 weeks I worked 32 hours each week. Mary still was up a lot at night. Still exhausted, still emotional, Robert still having issues and then Mary and I had infections.

This week I "only" worked 27-28 hours (25 or so as coordinator and then 1.5 hours of meetings). And I sent the kids to the babysitter for a few hours Thursday and CLEANED. And organized the cupboards and sorted stuff out. And generally I just feel better! But I've also had more time at home. And I've taken a bunch of pics. So here are some highlights of the week! Their new best friend. They fight me for my computer. At least I think it's my computer. Robert is pretty sure it's his!

Mary feeding her baby doll. I couldn't resist the doll high chair, lol it was on clearance and she kept putting her babies in her high chair and then they fall out cause they're so small.

Fishing for snack-pretzel sticks, goldfish and PB

Wesley thinks that Mary is trying to be the tooth fairy?

So does that make Robert the geotrax fairy?

6 weeks ago today we had a massive snow (and here we are today back with snow) and Mary was burned. Today:

We snuggled and read stories
We went shopping (Target and Walmart!) with Roger and Peggy and to McDonald's for lunch
The kids napped/rested and I made cupcakes WHILE SHE WAS ASLEEP (check out for the recipe). Which I think have finished snapping me out of the doldrums left over from not sleeping/stress and well everything.

We had snack and playtime and then they went to Roger and Peggy's house and Wesley and I went out for supper! We had a great time at outback and then wandered around a little.

Monday we go back to the plastic surgeon. And see the occupational therapist to get fitted for a compression shirt. I'm nervous!

Sunday, January 24, 2010

Big Boy Robert!

Poor Robert has been left out of the blog recently! Poor guy. Wesley and I keep looking at him and wondering when our toddler turned into a preschooler. All of a sudden he just seems so much older. We've given up on nap time and now he plays games on and navigates the mute button, the back button and the x to close the pop up boxes he somehow manages to open by clicking on random keys. And the mouse of course!

We've been doing more crafts and he is getting better with scissors and glue sticks and actually has an attention span! He loves playdough.

He invites Mary to play stuff (come on Mary lets play doll house, come on Mary lets play trains). He talks on the phone (and carries on pretend conversations with Caleb and Logan!). He plays with the geotrax a TON. And the layouts stay up until he and daddy get tired of them They did change it yesterday evening but the previous one had been up a week!

He goes to the bathroom independently (just needs help wiping!) and will go first thing in the morning without prompting. He's dry some mornings (and wants to believe he's dry EVERY morning so he can get a treat!).

And today he wanted to stay with me during worship and did a great job. He doodled some in a notebook I gave him (I wasn't thinking that he would be in worship with me so didn't have quiet toys packed). He plays simon says, red light/green light, duck duck goose. He got a large piece traditional puzzle today and did really well with it! It's like 12 pieces and George so that helps!

Not to say we don't have our moments. He's exploring his power I think. Mom don't talk like that, mom I can't do ______anymore. And at times generally will do exactly what you don't want to him to do. He is unreliable about dressing himself. He can do it but at times chooses not to. And if I sit down to the computer he wants to play his game. But overall-wow. When things are good they are SPLENDID. He absorbs so much information from everything he sees and hears. I forget what word they were showcasing on "Martha Speaks" (a PBS show about a talking dog which is basically a very interesting vocab lesson!) but he was using it correctly this morning! Conspirator or something like that! Hilarious!

Wednesday, January 20, 2010

Today in pictures

Doll house fun. Robert plays with it as much as Mary!

Mary 4 weeks post skin graft

the white spots are ointment but the spot on her leg is/was an abscess that we had to have drained/cultured monday. Sigh. Still waiting for the culture reports and she's on antibiotics. (no idea why this text is underlining!)

Geotrax madness

And I put most of it together! Wesley made the fancy looping work but this is the most complicated layout I've ever done. It has grand central station, the Cars bridge/waterfall, the light up bridge, the covered bridge, the construction set, the crane and the train crossing! With 2 separate sets of elevation!

Friday, January 15, 2010

Prosper you and not to harm you

I've always loved that passage from Jeremiah...For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

It always takes a little distance to see the good in a situation. Although I've been looking for it since about 2 weeks post the accident. The first 2 weeks were just blunt survival. And sometimes barely that!

So here's my beginnings of a list:
1) I value my time with the kids more-we craft more, we read more, I am more present. Because I know that every day is a blessing. Now that doesn't mean I don't wish they would just play on their own for 5 min while I relax it just means that I wish it a tiny bit less! I am also more vigilant, more careful...
2) I understand more what my patients and their families are going through. Prior to this my only hospitalizations since I was 3 (which I really don't remember much about) have been to have the kids. Which were both c-sections and fairly intense but still happy occasions and expected.
-I might be able to explain the PICU/UVA to families awaiting transfer better
-I know what it is like to be waiting for a doctor to come in
-I know what it is like to watch your child suffer
-I know what it is like to not know what is going to happen next and it SUCKS. The almost 24 hours we were at RMH before being transferred to UVA were so hard because the doctors here didn't know what the plastic surgeons would think of the burns. (we were stuck because of weather)
-I know that sleeping in street clothes is not comfortable
-I know that living on cafeteria food gets old
3) I have been overwhelmed by the compassion and generosity of friends, church, coworkers and strangers. I am completely astounded and humbled. I am surrounded by a community that cares for people and they care for my daughter. I had NO IDEA that people I didn't know would send cards, pray, and wish us well. We have been so blessed. I have not made a meal since I've been home. I have not had an hour go by at work without someone asking about Mary. I don't think a day has gone by without some sort of phone call, card or package... Tonight a random person called us (a shriner). He had just heard about us and wanted to make sure that we knew about the shriner hospitals and said he would be happy to write a referal for us. (They are a free charity of the shriners). The closest one is Cincinatti though so I think we'll defer for now since the main stuff is done!). They had said in the PICU that the really bad burns go there and they pick the patients up and everything).
4) Wesley and I are even more of a team than before. We have cried together, prayed together, waited together. During that first week it was just the 3 of us. Day by day, hour by hour, just us together.
5) Mary and I had the snuggle time that we never really had when she was born. When Robert was born we spent the first 12 weeks mainly just snuggling on the couch watching movies. When Mary was born Robert went to the babysitter some but it was never the same. More to do: more laundry, more picking up, and then keeping up with Robert. I spent 2 solid weeks with Mary and it was sweet in a way. Of course the first week home when Robert hadn't seen me for 2 weeks and Mary was used to everyone being all about her wasn't sweet at all....
6) I have had the peace that passes understanding the whole time. And it really does pass all understanding.

Wednesday, January 13, 2010


I finally uploaded all the pics from the hospital and since then. They are pretty graphic. She doesn't look good in very many of them. But if anyone is curious here is the link. OVerall they are of just her face since up until last Wed she had a shirt on (that was created for her every day during the dressing changes).

Mary today

Today is 3 weeks since her skin grafts. 3 weeks ago now I was sitting crying in the OR waiting area (I'm sure everone thought my baby was having open heart surgery!). I just hated the thought of hurting her worse! And then we landed back in PICU when her oxygen levels wouldn't come up in recovery and she had junk in the breathing tube when they took it out after surgery. Today she has played computer games, made a sticker collage, played with her baby dolls, cut playdough and now is scavaging the kitchen drawers and pulling out old cups! This picture was taken after her daily sliming with elta cream (a 90% moisture retaining cream-it's awesome!)

Monday, January 11, 2010

Back to normal?

So here I am listening to my co-teacher teach (I taught the morning part). Mary is hopefully doing well at Denee's. Christmas cards are mailed. Could it be that life is eeking ever so slowly back to normal? Oh I certainly hope so. But I will say that everyone I have seen today has asked about Mary. I feel like the whole hospital has held us through this experience and has been so great. I feel so loved.

We are still working on getting Mary to sleep through the night. I think she is still waking up hurting some so I'm sure it will get better as she heals more. She did sleep from 8p-3a last night but we (note we is Mary and I not Mary, Wesley and I!) were up fron 3-4. Ugh. Wonderful way to start my first day back to work! But I actually feel pretty good. Tomorrow the house cleaner is comming so I've got to get the house cleared out so she can clean and then life will really feel more normal!

Friday, January 08, 2010

that giggle!

That giggle. Those giggles. Those kids together again. It makes me so happy! Mary really doesn't seem to be in much pain anymore :) which makes me so happy. She does tell me when the motrin wears off that she needs "ouchie medicine" but other than that she seems so happy. We were all in the car this morning picking Snoopy up from the vet (my girls are getting EXPENSIVE) and she and Robert were in the back seat cracking up about something. The cutest part was when Robert said "look Mary, those are your ouchies-don't worry I'm not going to hurt them". Aww! I wasn't sure what he would think of her when they were in the tub together yesterday but he didn't seem to think anything of her patchwork of scars on her chest/arm. They just played and pretended they were wales (spitting water) and did all the stuff they always do in the tub. This was the first bath Robert hasn't fussed about taking since the accident-maybe in this too he just missed Mary! I've bathed them together since Mary was 2 or 3 months-so for a long time. Mary does great with the cream (we call it tickle cream) and is getting better about getting clothes on and off. So we're getting there. Day by day.

Oh I meant to say something about Snoopy. She's been having urinary problems-has had 3 or 4 rounds of antibiotics for UTI's and within days of finishing her antibiotics she goes back to having to pee every 10 min. Let me tell you-that's getting annoying! So we took her today to have a urine culture (they go through the skin into the bladder for dogs!), an enema and then an x-ray (the enema so they could see the bladder). It does look like she has a tiny stone. So we're waiting for the culture results (they say next Wed or so) and then they'll prob repeat the x-ray and if it still shows the stone then they'll put her on this special dog food that changes the PH of her urine for 4-6 weeks and hope that it disolves it. My girls!

Wednesday, January 06, 2010

First Post Op Visit

Mary had a 9 am visit to the plastic surgeon this morning. They cut off her dressings and said we were DONE with dressing changes! From here on we do the elta cream (a swiss high moisturizing cream) with gentle massage to break up scar tissue twice a day. She can bathe and do whatever. She does have some areas of folliculitis from where her pores are healing (plugged ducts) she had a plugged eyelash duct over the last few days which is greatly improved today with just warm soaks. We go back in 2-3 weeks and see them and then the burn OT (occupational therapist) to be fitted for a compression shirt. Their only directions are the cream+massage/compression garments/NO SUN.

They were so pleased with the dressing changes we had done and how good everything looked. They said that most of it had to do with post op care, not the surgery so thanks to all who did dressing changes and thanks to all who prayed-all the glory to God! I am still saddened when I look at her chest/arms. She ran around without a shirt for 10 min at the office and it just breaks my heart. I know we are just 2 weeks (from today!) from skin grafts and it will get a lot better but I still miss that huge expanse of perfect baby skin! She was giggling at herself in a full length mirror so it evidently isn't phasing her at all. Bless her little heart.

Another milestone is that she slept in her crib all night last night. She woke up crying in the middle and I gave her pain meds and put her back down and she went back to sleep. It seemed like it was where we attached the shirt at the shoulder that it was hurting just because it was rubbing and so hopefully without the bandage shirt on it will be more comfortable. The doctors are also saying that the burns are at the itchy stage and by doing the cream twice a day it will really keep her more comfortable. I just did her whole procedure in about 2 min-which is less time than it takes to set up for the full dressing change before!

Monday, January 04, 2010

Not me Monday

-I certainly did not just finish off a whole espresso dark chocolate candy bar in a sitting. Nope, not me
-I did not just subject Mary to a scrubbing and then exclaim over and over how good she looks and then pull out the pics of when she was at her worst for my nurse friends to see. (yikes)
-I did not pull out the camera first thing when she came out from the dinning room wearing her footie PJ's with Robert's boots. Hilarious!

And yes I did read some books, snuggle and watch TV, feed, and put her down for a nap. It's good to be home!

Sunday, January 03, 2010

Life is sweet!

The bliss of being home, being back in a semi routine, together is almost indescribable. When I think of just last Sun and how sick Mary still was and then look at her today running around, back in church, eating deviled eggs and licking the jelly off the just takes my breath away. I want to hold on to each precious moment. Each "tank-do mama", each smile. I am so blessed.

Saturday, January 02, 2010


We've had the best Christmas ever. Oh we are so thankful to be home and so thankful to have Mary so much better. She was up a bunch last night and ended up sleeping with us (sigh). I was too tired to get out of bed and rock her so she ended up with us. Through multiple doses of pain medicines (11:30/3:30/7:30) and fussing. But at 7:30 we got up and opened presents. All the grandparents were there and they had a ball. She was a little cranky but perked up after breakfast and really seemed to be enjoying her toys. He main toys were a doll house and a doll crib. She has played all day. Robert got a lot of train stuff and has had a great time playing trains. The living room is trashed and we are HAPPY. Breakfast was a coffee cake mom and I made and a quiche that Roger and Peggy brought with fruit jello and tea. For lunch mom got a rotisserie chicken and we made mashed potatoes and green beans and broccoli salad. Grandma R came by this afternoon for a visit and helped with the dressing change which went really well. It's healing nicely and her face is very close to being healed completely. We are so thankful and happy to all be home together!

Friday, January 01, 2010

We're home!

Just wanted to post a quick update to say we got home this afternoon and everything is going well. We're going to have Christmas in the morning. We've almost gotten all the presents wrapped just need to finalize some stuff....

Happy New Year!!!!!!!!!!!!!!!!!

Mary has done fabulously the last day or so! Yesterday we had more visitors and that went well. She was cute and funny and just generally her! I was so thrilled. Now that her NG tube is out she is eating fine-probably NOT the 1200 calories that dietary wants her to have but pretty close to her home amount! Which is good considering that the food here is kinda meh! I'm sure she'll perk up at home even more. She had been having more pain and we upped her pain med dose and she slept all night! She had a dose at midnight and then slept until 6:30. She was a little fussy then and we gave motrin. Our night nurse just talked with the plastics people and they want her nurse today and I to do the dressing change. So that means we can schedule it for whenever. We have an order for a double dose of pain meds prior to dressing change so that's good! And it means we can take our time and be gentle and soak first. The peds surgeons have my FMLA paperwork and are supposed to be writing the pain med prescription so it looks like I may meet my goal after all! I'm guessing what I'll do is take pics of her chest as we take the old dressings off so we can see where the Vaseline gauze needs to go back. I do need to see a plastic surgeon at some point before we leave so I can find out when the places that have Vaseline gauze can be switched to just the lotion. I'm sure we'll be back in a week or so for a follow up visit so I'll ask about when we can put her in the tub etc then.

wishing...and hoping...and praying...and hoping and hoping that we get to go home today!!!!!!! The first week or so is going to be hard as we do dressing changes etc but I think we are well on the road to recovery. Praise God! So here is to a better start to this new year!