Friday, October 29, 2010

The Long Haul

Well I meant to blog updates through the surgery and recovery. But it was just one of those things that fell by the wayside.

This recovery has been far longer and complicated than we had ever really imagined. The doctor had told us we could be here at CHOP for 4-10 days, but had said ten days is really unusual but it does happen. Well we are on day 9 and will likely be here at LEAST through the weekend.

The surgery went very well. As expected. The surgeon told us that he tried to put a stent in the constricted area of Anna's intenstine to measure it. The smallest he had was the width of a pencil and he couldn't get it in the area. He said it should have been wide enough to drive a matchbox car through. So quite constricted.

Also Anna came out of surgery with a tube down her nose into her stomach that was draining off bile so that she wouldn't puke it up. The tube is usually in just for a few days as the drainage weans down. But Anna had such a high volume of drainage that she just got the tube out this morning after they did an Upper GI yesterday to be sure that things were all ok and nothing weird was causing the extra drainage.

Poor Anna has had nothing to eat or drink for 10 days. We are hoping today that she will finally get some water to sip and hopefully will be eating again in a few days!

Also because the recovery was taking a bit longer than expected Anna was receiving nutrition via her IV. But the IV nutrition is really hard on the veins and very quickly Anna started having continuous IV issues. The IV team had to be called several times a day to check her IV and often manipulate it or replace it. I think she had a total of 5 IVs placed, plus a few misses. So this became a HUGE source of anxiety and panic for Anna. The doctors decided to have PICC line placed so that we wouldn't have to worry about the IV and she can receive better nutrition this way. So she had to go through sedation again to have that placed. But it has been truly a blessing for Anna not to have to worry about that IV!

So we are really not sure when we will be home. But we are guessing early next week. I have been here with Anna since the day of the surgery. Ben has been at the grandparents' houses being spoiled rotten. So this weekend Cla is going to spend in the hospital with Anna and I am taking Ben home! I am a little disappointed to miss probably her first bites of food. But I SOOOOO miss my dear Benjamin and we don't want to miss Halloween on Sunday!

Here is Anna before her surgery. She was quite happy and playful despite being hungry.




They brought her a bunch of toys to play with while we waited.


And she got this beautiful quilt to keep!


Before taking her back for the sedation and surgery they gave her "giggle juice". It made her relax, and get sleepy and droopy. Also helps lessen stranger fear and causes mild amnesia so she won't remember the scary parts.





And here she is resting comfortably after surgery.






















At one point Anna had about 7 wires/tube coming out of her that were constantly all tangled and uncomfortable.


But soon she was feeling well enough to sit up and play with some toys.

Aunt Robyn and Uncle Steve sent Anna a big bunch of balloons that she had a great time playing with. She got all tangled in the ribbons and then passed out from exhaustion LOL


And finally the tube is out of her nose!


Toot Toot Chugga Chugga Big Red Car


Wednesday, October 20, 2010

We've Decided To Let Things Slide

Ben is really big into sliding lately and constantly asks if we will sit on the couch so he can use our legs as a slide. It is not that great of a slide and it gets sort of painful for us LOL...So daddy had a great idea the other night.



Then Mommy had an even better idea. I checked out Craigs List to see if there is anything that would work for us. We immediately came across this slide for a price that couldn't be beat so we jumped at.


We had it in the living room for the morning because I wanted Ben to get to try out before he left for Grandma's house and it was pouring rain outside. It is now in our yard waiting for Anna to recover from her surgery and for Ben to come home.

When the cold weather comes we may keep it in the basement so the kids can still enjoy it.



Wordless Wednesday


Monday, October 18, 2010


FOR TODAY...

Outside my window... sunshiny and crisp! Leaves are starting to change and fall. Squirrels are very busy.

I am thinking...About list making, about my dad who is having surgery tomorrow, about Anna Anna Anna, about Ben who may have a week of being passed around from family member to family member and I hope he understands and has a good time instead of wondering where his parents and sister are!

I am thankful for...All the family and friends who are praying for Anna and have offered to help. Especially those who will be helping take care of sweet Benjamin and making this strange time more enjoyable.

From the learning rooms... Learning? What's that?? Haa haa...we havenot done much table time just because we have been in and out with appointments and whatever else. But Benjamin did read his first BOB book a few days ago. So learning marches on, although very informally...which is fine of course. Another important lesson that has been taking place. Or really I think BLOSSOMING is probably the best word for it. Is a friendship between Ben and Anna! Just in the last week or two suddenly their constant power struggle for toy ownership, the constant pushing, and yelling, etc has largely stopped. Ben has been inviting Anna into his games. Giving her toys to play with along side him. Lots of hugging and kissing and cuddling even. Lots and lots of giggles together. Lots of sitting and reading books together. The sharing difficulties still come up but they are resolved much quicker and with far less tears these days. I think Ben is understanding how to negotiate his own way around siblinghood finally and it is a joy to watch.

From the kitchen...Uhh we are mostly doing bare bones as we don't really wants lots of food around or leftovers since we are not sure how long we will be away from home as a whole or in parts.

I am wearing... denim skirt and brown shirt

I am going... watch a few episodes of Arrested Development while the kids nap.

I am reading... Emily Climbs. Finally onto book two of teh series!

I am hoping... This week passes quickly, smoothely, and ends more joyfully than the first half.

I am hearing...Anna's mobile over the baby monitor, birds chirping, and nothing else :)

Around the house...First basement door is up, pipe needs replacing in the upstairs bathroom, I need to sweep the floors still since we did tabletime instead of me sweeping.

One of my favorite things... good coffee.

A few plans for the rest of the week: Packing the stuff we will need at Children's Hospital. Packing Ben to go to grandma and grandpa's. Calling the hospital tomorrow to find out what time Anna's surgery will be. And the rest of the week will be spent taking care of Anna.

Here is a picture thought I am sharing..well a video this time:



check here for more daybooks

Monday, October 11, 2010


FOR TODAY...

Outside my window... dark (because it is night time!), cool, but not cold. I can hear crickets chirping away and there is just a little fingernail sliver of a moon tonight.

I am thinking...Still thinking about Anna. Anna Anna Anna Anna. I am thinking about her upcoming surgery which was scheduled today. I am thinking of the logistics of visiting/being with her and taking care of dear Benjamin. I am thinking about whether I will sleep again. I am thinking about how in a year all she will have is a really cool scar and a dramatic story to share. I am thinking about if I will have a chubby baby once she can digest food and empty her tummy like she should. Will she need all new clothes? Or, more likely, will her clothes finally fit correctly?

I am thankful for...the great doctors and nurses we have met at CHOP. Not only professional, competant, at the top of their fields, but also caring, upbeat, positive, and the ability to make you believe that your baby is their only concern. I am also thankful to my friend Kori who encouraged me to switch pediatricians to her practice. She was right and they were a God send. Getting us on the right track IMMEDIATELY with my little Annabella.

From the learning rooms... Well it should be pumpkin week, but I am thinking we might end up taking this week off and picking up pumkins next week. Today my mom came and picked Ben up for a visit right when we would have started table time and so he wasn't interested in sitting down for that when Grandma was around. Tomorrow I will be picking him up in the afternoon so again we will miss table time. Then I have a dentist appt and he has a weightcheck somewhere in there. So it is just a weird week schedule wise. But that is the beauty of homeschooling. It is TOTALLY flexible. But also he is just 2.5 and whether he sits down to read with mommy at a set time this week or not will have little to no bearing on his future academic success LOL


From the kitchen...we have a kitchen?? Still have apples that still need baking.....Did make a lot of zucchini bread last week. And that is it really. I hate cooking.

I am wearing... denim skirt and black tshirt

I am going... to relax and then go to bed and hopefully sleep.

I am reading... Emily of New Moon....just a few pages to go!!!

I am hoping... I am not even sure what I am hoping for right now. For everything to go well with Anna's surgery. My dad is having surgery the day before Anna so I am hoping everything goes well with his surgery as well! I am hoping to sleep peacefully and that Anna sleeps peacefully. She has been waking a lot lately. Totally not like her :(

I am hearing...Cla breathing. He is taking his pre-bedtime nap ;)


Around the house... the usual messes. Although a little better than usual since Ben is at Grandma's and we were out all day and ate dinner out!! Cla is working on getting the doors up in the basement as we inch closer to a finished basement.


One of my favorite things... Cooler weather.

A few plans for the rest of the week: ohh gosh who can even remember. Some appts and hopefully the rest quiet, restful, uneventful

Here is a picture thought I am sharing:

Almost a year ago!! Time flies!

check here for more daybooks

Saturday, October 09, 2010

Health Update for Anna

I think I mentioned somewhere along the way here that Anna had an appt with a Pediatric GI at the Children's Hospital. He ordered a whole slew of tests that I understood were sort of just standard for children who are failure to thrive, but I must be honest and say that I felt they would by and large be a waste of our time.

The first test that was scheduled was an Upper GI. You know the one where you have drink the big cub of chalky barium. Blech!! So during this test the Radiologist noticed first that even though I had not given Anna anything to eat or drink since early in the morning her stomach was still full. Then he saw that in her small intestine, just below her stomach, there was a narrowing. His gut feeling was that Anna had what is called Annular Pancreas which is a congenital abnormality where the pancreas for some reason grows around the intestine and constricts it. This causes the stomach not to empty properly.

To get a clearer picture and to verify the diagnosis her GI ordered an MRI. So last Saturday we trekked back to CHOP for the MRI.


Because of Anna's age she had to be sedated for the MRI. And it was another day with no food or drink for her. She is such a trooper though and was in good spirits despite being hungry.

Anna's lovely, friendly, and caring nurse, Carol.


Ben came along for the day and was very happy to be able to watch PBS on his own personal and adjustable little TV. He kept turning to me and saying, "this is a special treat!" Ben was such a good boy all day. So much so that the nurses gave Ben and Anna each a little stuffed animal before we went home.




One great thing about the sedation department of a children's hospital is that they have their own Icee machine!! So once they finally took Anna back for the MRI we ate our lunch and helped ourselves to some Icee :)





OUr room in the sedation wing.

Our beautiful Annabella after the MRI, but before she woke from sedation. She did great for the MRI, but the waking up part was rough on our sweet little girl. She was so disoriented and upset.


The MRI report stated "Highly suggestive of Annular Pancreas". So now we have been referred to a surgeon at CHOP that we see on Monday. The GI feels that it will most likely need to be corrected surgically, but that we will see what the surgeon has to say. Prayers please for our little girl and her surgeon!!
We also went to see a nutritionist at CHOP who said ideally Anna would put on a few pounds before surgery. She is currently 16lbs6oz and 14M old. The nutritionist said that without a few extra pounds that her healing could be compromised and she will likely lose weight during recovery and she simply doesn't have an ounce to spare. So we were prescribed special high calorie drinks and powders to give her. And, for example, she had fruit loops for breakfast with heavy cream instead of milk! So again please pray for Annabella that she stays healthy, puts on weight, and if she should need surgery that she recovers quickly and completely!