Home Sweet Home

I came home last night! It was a late discharge because the pediatrician on rounds had lots of higher priority kiddos to tend to.... but I was patient (I had to help mommy be patient too). Grandma Sue and her friend Jan, and aunt Shawnee helped us pack the van with all the hospital stuff and we came home!

Daddy was soooo happy to see me. And Grandma Dorothy and Liam too. Thanks to all those who dropped off WONDERFUL meals. The split pea soup is gone! The fried chicken, spaghetti, salads, sweet goodies, oh my! Thanks to all for your prayers and generosity during yet another hospital stay. It means a lot to me!

Photos from the hospital

This first photo was taken during the first couple of days of Tommy's hospitalization. He was out of it!

Brothers Nate and Liam entertain themselves in the hospital.

Mommy and Liam were sooo glad to see each other!

Hi mom! Peek a boo!

Tommy doing his "champion" sign.

Mom, phone for you!

Twins in bed.

Saturday update

Still here at the hospital. Mommy is 'wired' now, thanks to aunt Shawnee's laptop! So updates may happen more quickly. My oxygen sats are still low on room air so back on the 2/10 of a liter of oxygen support. I woke up at 4:30am and peeked through my crib rails to see mommy snoozing on the sofa next to me.... coo, coo I said, come on mommy let's play!

And the playing didn't stop until 12:30 in the afternoon. Aunt Shawnee came and read books and played with me while mommy ran into work for an hour (and grabbed a mocha, geez that felt good). Now I'm sleeping and respitory care will be back around 2pm to help clear up the junk in my lungs.

Thanks to my friend Kaden's momma for stopping by with a 'hello'! Thanks to all the prayers and get well wishes from everyone of our blogging friends. Thanks to Aunt Debbie, Grandma Sue, Aunt Tami and Grandma Dorothy for their helping hands. And a big thank you to Daddy for holding down everything while we are in the hospital.

Chelsey Ebert

I wanted to tell you about my friend Chelsey Ebert.

She passed away on Wednesday after a nine month courageous battle with cancer. Although I have only know Chelsey since she had the cancer, we shared visits at Children's Hospital and I will always remember sitting in her bed or on her lap in her wheelchair, staring at her smile, her sparkling eyes, her sweet voice and most of all being surrounded by her faith in God and strength.

God has placed her and her family in our path many times. We could feel her strength present rooms and floors away from where she was from us. She is one of God's saints and he has called her home. The opportunity to know Chelsey Ebert will stay with our family forever. You don't meet many angels!

Here is something from today's Bellingham Herald: http://www.bellinghamherald.com/255/story/275089.html

Please pray for peace for her family.

The 8th day at St Joseph's

Yes, I am still inpatient at St Joseph's. I have more energy today and have started eating orally again. But my lungs are still junky and my oxygen sats are low.... so we stay in the hospital for now. Mommy is playing games with me, finding books to read to me, and today I got to sit in a baby bath and soak my sore bum.
Many thanks to all of you who continue to pray for my recovery. And thanks to family members who have come and gowned up to sit with me and give mommy a break. She will have lots of pictures and stories to tell later.

A very sick Tommy

Tommy was admitted to St Joseph's Hospital here in Bellingham Thursday night. He has RSV and Pneumonia. Please pray that his right lung clears up and that his strength starts to return to his body. His fevers have been as high as 105. We will try to keep updates posted here soon.

Helpful hints

With both of the boys sick, here are some helpful hints from our day:
*When a baby is vomitting don't move throughout the house in search of where you left the washrag for his face. This only makes the mess bigger. Much bigger. Especially involving the staircase (which is horrible to steam clean).
*Do not call the medical insurance company asking about durable equipment benefits with both babies sick, even if you think they both just went asleep for a nap. It never fails after waiting onhold for 30 mins and finally getting a rep that knows something about our plan and our situation.... both babies wake up screaming upset.
*Don't switch from Pedialyte back to milk. Even if they look like they are feeling better, they are just acting. Spoiled milk from a sick baby is the worst smell.
*Yes, put on that third pot of coffee, it's the best decision you have made all day.
*Liquid tide, plus "color safe" clorox, plus downy is too much in an HE washing machine. After three rinses I still can't get that load desuds.
*No matter what toys you play with or books that are read, the best thing on a sickday is a bunch of pillows and a snuggly mommy (and a signing time video).

No sniffles for me!

Brother Liam is really sick with a head cold. Mommy was home yesterday with us, now Daddy is home today with us and it's looking like Liam might still be sick tomorrow.

Daddy took us to our one year doctor appointment today. Since Liam was sick he didn't get any vaccinations. No such luck for me though. And did I tell you how many shots you get at your one year check up? I ran out of leg room for all the shots. Including my second flu shot!

Mommy took my food diary to the nutritionist today and learned we are shy on iron rich foods. So I ate lentils tonight! And baked halibut. She is going to post more on that another day though. The nutritionist and mommy were happy that I weigh 20 pounds and 2 oz!

Here are some pictures of me, Liam is so sniffly you wouldn't want to see him today :)

Merry Christmas

All six of us!

Birthday Bash!

I love opening wrapped presents. I liked what was inside all that paper.... but let's focus on the paper. It made sounds, brightly colored and no one cared if I ripped it and tore it. Mmmm, paper. And more chocolate cake! We are one year old!

Motor skills

I'm really enjoying trying to scoot my body around. Here's how I do it, I lay on my back, bounce my hips up and down and move them side to side and you do it enough, and I mean lots and lots....and presto.... mommy almost steps on ya because you are in a different spot than where she left ya!

Wonder twin powers

The best part of being a twin is the cuddlin'

Warming up for our birthday party

Did I tell you I turn one year old on Wednesday? Liam does too! So mommy gave us a cupcake after dinner tonight to 'warm up' our cake eating. I put some in my mouth by myself.

Weekend full of Christmas Parties

Mommy and Nate enjoyed a VERY fun 4H Christmas party on Friday evening. They even got to see a magic show. Next year I hope to feel better and I'll go too.


Saturday all six of us went to the 'Parent to Parent' Holiday party. I was feeling alot better so I had fun! I got to see many of my friends and I got to meet a few new ones! I even played in bird seed. Plus there was this guy dressed up in a red suit and he had lots of fury-ness on his face... I LOVED HIM. I sat right on his lap while I was getting my feeding. Mom called him Santa. Liam called him scarey! He gave us board books.



Hannah and Mommy are fixing up my feeding.









Nate and Liam play with Max in the bird seed.









Hannah and Liam playing with playdough.

Rocking chair blues

Monday was my only 'good' day this week. At playgroup I visited with my friends and ate a frozen lemonade bar, brrr! But starting Tuesday I wasn't feeling very well. My tummy hurts. I vomitted all day on Wednesday. Yesterday was a follow up Cardiology Appt at Children's Hospital. Daddy took Liam and I to that appointment and I tried *really* hard to have fun. Dad said I started looking better. But no such luck. Today I spit up blood and it was back to the doctor again. Turns out it might just be that I have irritated my throat. I feel better this afternoon, but maybe it's because I can just stare at mommy (and laugh with her silliness). I'll let you know more tomorrow how I feel. For now, mommy will keep on rocking me!

Haircut

We braved the snowfall and were almost an hour late to our haircut (sorry Heather) but we made it safely. And Tommy got his first haircut. This first picture is our "before" and the two following pictures are "during". Mommy will update the post with an "after" picture. He was a very cooperative little boy. Daddy held Liam long enough for Mommy to get her haircut too! We really enjoyed our great haircuts (and Daddy driving us safely to our errands). Mommy will update this post with an "after" picture.

Promise

Hello! I wanted to show you what Liam and I do during the day when daddy and mommy go to work. We play at Promise. Here I am in my highchair ready to eat.

And here are Liam and I going for a wagon ride outside. Lots of fun. We love our teachers Tiffany and Marlean.

Big "roars"

I have been finding my "voice" lately. Sometimes I try really hard to talk and it comes out very loud and surprises mom and dad. Seriously, I yell sometimes. This week at playgroup we were singing "Old MacDonald Had a Farm" and the teacher was showing us a lion and "roaring" like a lion... so I dug down deep inside my throat and tried for that roaring sound too... ROOOOAAAARR! Right along with everyone else singing. Mommy was so happy.

Playgroup was also fun because mommy sat me right in the middle of a bin of dry oatmeal. Lots and lots of dry oatmeal. Enough for me to dig shovels into, fill a bucket, dump on mommy's clothes and eat!

And speaking of eating.... snack was mashed potatoes and gravy. Two bowls were my snack. Mmmmm. I am so glad I wasn't sick anymore so I could go to playgroup this week!

Today is Wednesday and Daddy is taking me to feeding therapy at Connections. We will post more later on my new zvibe which is a cat/mouse and my chewy surgical tubing.

Praise

This has been an entire week of babies at home sick. Today is the eigth day. I read a quote that said it's easy to praise God for the roses but much harder to praise him for the thorns (and if you do the math, there are alot more thorns). So, here are my praises to Him for this week's experience: thank you for baby vapor bath, and while we are talking about baths.... thank you that Tommy can still be bathed in an infant bath along side Liam (it helps his floppy'ness'), thank you for infant tylenol, infant advil, and the ability to develop a spreadsheet to track when each baby should be given which one (we rotate advil and tylenol, never given together, but it seems to help this week), thank you for the peacefulness of two sleeping babies so I could get a HUGE plate at Thanksgiving dinner, thank you for dishwashers with an option of sterlilize for baby bottles, thank you for barf bowls (yes, Hannah was sick this week too), and carpet steamcleaners, thank you for disposable diapers (I haveNEVER seen a virus with this much poopy), thank you for coffee which is the absolute only thing keeping me upright, thank you for baby monitors because it amplifies twins crying in the night to the point that everyone in the house suddenly wakes up and asks if you can quiet them to sleep, thank you for the swiffer mop (this virus makes Liam spit up and the kitchen floor is his favorite marking spot), lots of thankfulness for pedialyte, thank you for the ability to place the babies in a jogging stroller and get out of the house each day...... thank you for Colin, Hannah, Nate, Tommy and Liam; they are my roses.

The bug continues....

We were home sick yesterday with Daddy and now today we are home today with Mommy. Our sickness bug continues. Runny noses, lots of poopy, and she calls us "cling ons". (she says it with a smile though).

Here are pictures we took a week ago for our upcoming first birthday. Mommy wants to thank Grandma Dorothy for helping with the impossible task of getting professional photos for us. Enjoy our pictures!

Pumpkin pie

Today started off with a walk. I said good bye to my daddy (who went to the Seahawks game)and hello to my stroller! And mommy was really happy when she got to walk with neighbors Nora and Kim and talk like an adult for awhile. The sunrise was earlier in the week. You can see Mt Baker to the left.

Then we were off to Aunt Debbie's house to visit. I spit up on her carpet (mom I told you I couldn't drink that much!). Auntie got to change one of my worse diapers, oops. We got to take home some fun toys from my cousins (they were outgrown but look like a lot of fun!).

Last stop was the grocery store to pick up pumpkin pie ingredients. I love pumpkin pie. Mom is making 4 of them to take to Thanksgiving. She won't make them until Wednesday but we stopped and picked up the stuff.....mmmmm I can't wait. Hannah took a picture of us.

I wasn't happy because I got the cart seat and brother had the fun spot.

Occuptional Therapy

At OT today Tommy sat in a beanbag chair and oh my was he comfy! This beanbag chair provided lots of support for him so that he could grab at the strand of beads that our therapist dangled above and to the sides. Tommy can sit just fine and plays with toys within his reach. But in this beanbag chair, his arms went everywhere! He tugged, pulled, grabbed and even played a bit of hide/seek with the strand of beads. All because he felt that his body was well supported. Needless to say, mommy is heading to the store tonight for a beanbag chair!

I love you!

Mommy told me she loved me this morning with barium speckles still on my face after the swallow study. It went well and we were successful with nectar 'plus

Mommy told Hannah she loved her. My big sister's eyes were welled up with tears about a disappointment and my mommy hugged her and said how much she loved her.

Mommy told grandpa Bill she loved him. Grandma Sue and Grandpa Bill celebrated their 40th anniversary.

Mommy told her mother in-law (grandma Dorothy) and her mom (grandma Sue) she loved them. Unless it's a surgery or a holiday we don't get to see our grandma's together and it was a treat!

Mommy told Pam F she loved her. She loves Pam and Gary, Jay, Stephanie, Jordan and most importantly Chelsey Ebert. We love them. She prays for peace in these final months together as Chelsey has fought an amazing battle with Osteo Sarcoma. We love Chelsey!

Mommy told Nate she loved him today. See, he didn't shower..... nor brush his teeth today. Mommy hugged that stinky 12 year old boy and just loves him.

Mommy would have told Daddy she loved him, but after the big windstorm, daddy is still repairing downed lines.

Mommy told Liam she loved him as he *finally* fell asleep at 9:30pm. His eyes as dark as black ink.

Keeping up with Tommy

The week started off with developmental play group on Monday. Lots of songs during circle time, including one that asked "what do you say in the morning?". Mommy said I say "mamamamama" and as soon as all the nice people sang that.... my face was soooo happy. They were singing my favorite tune! I played with scratchy things like a loofa sponge. I didn't mind it until mommy rubbed it on my arm, no thanks mom! During snacktime I ate two bowls of mandarin oranges. Liam sat next to me and he ate lots too. Then H. let us play with whipping cream, oh my that was fun in my mouth, on my brother, on my mom..... hey mom let's do that again at home.
Tuesday was occupational therapy where I showed off my sitting for a few minutes. Mommy was excited, I was excited and E our therpaist was really into it too. So she had me sit on a ball to strengthen the muscles in my lower back and hip so I can learn to go from a sitting position to a side lying or onto my belly. Nate and Hannah came to watch.









Wednesday was feeding therapy w/ M. at Connections. She helped mommy prepare for our swallow study coming up on Monday. And she gave me a tube (skinny and long but thicker around than my old ng tube) to bite and suck on. Oh boy, that reminded me of holding my ng tube and I loved it. M. put purees on it and I sucked them clean! And I swung that tube high and low.

Today is an 'at home day' as I have a fever and so does Liam. The virus finally made it's way to our house. Mommy put a pot of coffee on and has no expectations to do anything else but cuddle us (and get this post done). Here are two sleepy babies after an appt this week.

That's it?

Yesterday's surgery follow-up appointment at Children's was the shortest appointment ever. 30 mins including weigh in! Almost four hours round trip drive for 30 mins. Mommy's not complaining though as the appt reassured her that the extra skin growing around the BARD could be resolved thru an ointment. It's called granulation, although mommy like's Shari's explanation of 'cauliflower skin' as that's more of what it looks like. It's skin along with blood vessels trying to push the foreign plastic object out. So, mommy now has a steroid ointment to apply to all those skin flaps. Thank you Grandma Sue for helping out at the appt. Liam liked visiting with you!

Halloween

I wanted to tell you about my Halloween, so mommy is going to try to type the story as I coo about it. First, mommy went to work today so Liam and I went to Promise to be with our friends

(we love it there). Then when mommy came to pick us up she said something about trick or treating downtown Bellingham. No rain, no wind, mommy was getting us out for some fresh air! We visited her friends at her old job; Linda and Cindy were glad to see us! Then we visited her friends at her job at the Health Dept, they loved seeing us too! On the way back to the van, my younger brother fell asleep in the stroller.... I didn't miss a thing though, lots of kids were everywhere downtown and can I tell you how much I love 'light sabers' now?

When we got home mommy let me and Liam play with some toys while she did that boring chore of folding laundry. Then.... a knock at our door! Since we live out in the county mommy doesn't get many drop by visitors so she is always kinda leary.... it was our neighbors the Weisenhorns dressed up as mobsters. "fresh from a heist". I loved their mommy's outfit because she had long eyelashes! The W family made our evening.

Daddy and mommy let us eat cupcakes after dinner. Then mommy showed us these weird pumpkin things and wanted us to put our nice dry hands into the cold messy insides of them. Excuse me, no thank you!

What in the world is that?

Liam and I had a great Halloween!

What a weekend!

The highlight of the weekend was Tommy's increased oral eating. Here is what mommy tried with Tommy: chicken with ground barley (almost a poppy seed texture, Gerber food), pumpkin pie with whipping cream (okay this one mommy was eating and just decided to use her fingers in Tommy's mouth which is REALLY successful instead of a spoon with new foods and textures), juices thickened in a nosey cup, tapioca pudding, and the BEST was Sunday spaghetti dinner made with ground turkey in the sauce..... yep, he ate it, fork smashed but still the larger spaghetti noodle textures and ground turkey was larger bits for him. He loved it and was reaching for the bowl. I cannot believe how quickly this is increasing for him. We meet with a dietician today and am taking his food journal (very proud of Tommy!).

Daddy and mommy took the boys camping this weekend. We enjoyed visiting with Grandma Sue and Papa Bill as well as old friends Brent and Lisa. Here is a picture of our Halloween outfits. Of course the twins are the cutest chicks and mommy/daddy are chicken farmers!

Victory from the NG tube

We saw our favorite pediatrician today to give us the Aokay on using the Gtube. After his approval we celebrated by letting Tommy take his NG tube out for the last time! Daddy was working late so it was just mommy and the kids enjoying a hesitant Tommy removing that nasty nose hose.

Liam, Hannah and Tommy are excited!

Tommy wasn't sure he should pull it with so many people watching. He thought about it for a split second, then quickly started pulling it out....

VICTORY!!!!