Sunday, December 30, 2007

Dec 21st through now...





Anara's nuclear medicine scan (the 21st) went great and her kidneys look fine. We have been spending time with family and friends for the holidays. Our rounds should have been complete today with a trip to see Nate's extended family but both girls are coughing and have runny noses. Colds aren't just normal colds in our house. Anara does great with them (little bit of coughing, runny nose, couple fevers and it's gone), but Violet is a different story. She coughs non-stop and this is why we ended up with steroids just a few weeks ago. I hope she outgrows this but until then the sound of the nebulizer will be ringing in our ears.

Tomorrow Nate and I are taking a train to Chicago. We are staying one night and then bringing the train back. This was my Christmas surprise and I am pretty excited (except for the sick kids part). This will be my 1st time away from Anara (for more than a few hours) since surgery and we could use the break.

Wednesday, December 19, 2007

Thoughts on adoption...

A week of normalness and I've finally had some time to stop and think. Anara and Violet are back in a routine. Anara is walking and playing and has resumed Anara-like activities. She isn't requiring as much care and her little personality is really coming back. Yesterday I was playing with the girls and all the sudden it hit me that Anara is just one of our kids. You are probably thinking, "Duh" but it has taken me a while to have this emotion hit me without having to think through it or force it. I have loved her for a long time but things hadn't quite clicked for me. Yesterday it hit me all the sudden.

While the girls were playing, I had a little time to catch up on blog reading. Many of my friends had focused recent posts on adoption. I don't spend a lot of time really thinking about adoption. I say Anara is adopted but I don't really stop to think about what that means or what we went through to bring her home. She just seems like a part of our family and I forget what life was like before we had her. Our OT mentioned that we didn't get Anara until she was almost a year old. I had to stop and think about that, "Really? Anara spent almost a full year of her life without us? Wait, we have actually only had her for 8 months." Anara has lived more of her life in an orphanage than in our home. I spent some time thinking about this and started feeling a sense of desperation and urgency. I forgot what Anara looked like when we walked into the tiny room where they had her isolated because of her medical condition. I forgot that she was standing in a crib soaked with urine and stool. I say this not because they weren't doing a good job caring for her--I believe they were doing the best they could--but because it is the way things were without a mom or dad. She was so skinny and weak, and she couldn't even sit on her own.

Our road to Anara was not easy - there are many obstacles involved with international adoption, but we were able to see God's hand in everything we went through. Our time home with Anara has also not been easy. I have run the gamut of emotions from elation at growing our family through adoption to being absolutely overwhelmed by the fear that things would never again be normal. Anara had some behaviors (and still does) that are signs of institutionalization. Caring for her medical needs is difficult sometimes and runs us ragged. Fighting with her over feeding, bathing, and other daily activities is sometimes extremely frustrating and stress producing. Often I am afraid that things will always be hard and a couple of times I have worried that we have bit off more than we can chew. However, this is not the case. God through the support of family and friends has met our needs and provided exactly what we needed for the time.

I do not think that international adoption is for everyone. It is definitely not for the faint of heart. As with biological children, there is no guarantee that what you see is what you get. You cannot predict the issues that come with adopting anymore that you can predict that you will have a healthy and perfect newborn. It is likely that your institutionalized child might have behavioral and emotional needs that require extra care. However, living in the U.S., we have wonderful resources and people to guide us through these experiences. Knowing and trusting God will give peace and grace to deal with things that seem impossible.

I am not sure why I am writing this. I do feel a sense of urgency. I would love to adopt again someday. I was talking to a friend who said that Nightlight's Kyrgyzstan program has grown considerably. They have had referrals for very young babies. This is not usually the case with international adoption. The wait does not seem long for this country. I don't really care where people adopt from - an orphan is an orphan, but I do think it is good to go where the need and the openings are. Unfortunately many countries are not open to adoption right now and you have to go where the children are available. Kyrgyzstan is a great program and a great opportunity. We enjoyed traveling there and while we didn't witness the magnitude of the orphan population, I have heard that it is substantial and the resources available to care for these kids are very limited.

Maybe I am just posting this to process my own emotions related to the issue of orphans. Maybe it will prompt people to consider embarking on this journey. Hopefully it will serve as a reminder for all of us to take seriously the issue of orphans globally and to figure out what our individual contribution could be. I would love for every family to have their own Anara, Noble, Beck, AP, C, Matthew, Joshie, Kenny, JJ, Zeke, Sofia, Alina, Audrey, Kiah, Jake or Luke (sorry if I forgot anyone), but I realize that adoption isn't for everyone. However, everyone can do something. We can all pray for orphans. We can financially support legitimate adoption agencies, churches sponsoring adoption, foundations, or couples we know that are adopting. We can be foster parents for kids in our country. We can journey to other countries to hold babies and play with kids.

Tuesday is Christmas. I cannot imagine Anara having spent another Christmas in the orphanage. At a time when we travel to see family and every get together is a celebration, I cannot imagine her alone in a crib. I am praising God for the amazing blessing of Anara. Adoption is very near to our heart and I just had to post some of the things that I have been thinking lately, but I think my friend Jen put it best when she said, The last thing I want to do is elicit more "Look at you, you're doing such a good thing!" comments. It's not that we are so special or saintly. It's just that we've seen the needs with our own eyes. If more people saw, they would feel the same way. I hope that you have a wonderful Christmas and that we all have an opportunity to remember Christ's coming to earth and becoming flesh so that we could be adopted into His family.

Tuesday, December 18, 2007

Luke 2

It has become a tradition in our family for a young one to memorize and recite some of Luke 2 during our Christmas festivities. Violet is almost ready for a turn this year (minus a few skipped or mispronounced words). Here is video of Violet following in cousin Guy's footsteps (posted especially for those that can't see her do it in person).

video

Translation:

Luke 2
So Joseph also went up from the town of Nazareth in Galilee to Judea, to Bethlehem the town of David, because he belonged to the house and line of David. He went there to register with Mary, who was pledged to be married to him and was expecting a child. While they were there, the time came for the baby to be born, and she gave birth to her firstborn, a son. She wrapped him in cloths and placed him in a manger, because there was no room for them in the inn.
And there were shepherds living out in the fields nearby, keeping watch over their flocks at night. An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger."
Suddenly a great company of the heavenly host appeared with the angel, praising God and saying,
"Glory to God in the highest, and on earth peace to men on whom his favor rests."

Monday, December 17, 2007

Open House for Anara


We will be having an open house at Amanda's mom's home on December 27th. The open house will be from 4-7pm. Please feel free to stop in to say hello and have a cup of coffee or tea. Some people have expressed a desire to meet Anara (she was on a few prayer lists) and this seemed the best way to make that happen. We would love an opportunity to express our gratitude for your support and prayers in person. If you would like to know how to get there or want to let us know you will be stopping by, you can either comment to this blog or e-mail us.

Please no gifts!

Sunday, December 16, 2007

1st steps 2nd time...

She walks again!

Here is a video of this morning's accomplishment.
video

"I will never do that again Mama - I promise"

This is what Violet said when I caught her sneaking licks of the gingerbread house last night. I looked at the dining room table and saw a little hand reaching up to scratch frosting off the gingerbread centerpiece. It was too cute to really punish her especially after the "promise". I'm not really sure where she came up with "...never do that again...promise" but she sure is using it lightly. The gingerbread centerpiece is kind of like the tree in the garden and just another reminder of Violet's humanness. If it were a bowl of chocolates it would be a reminder of my humanness.

Below are some pictures of Violet's temptation. It certainly is a sight to behold.







This morning we awoke to a beautiful snow (as did the rest of the state) and we decided to let the girls open the presents from Nate and I. Violet got Chutes and Ladders and Anara got Brown Bear colorforms. It really wasn't too exciting but we captured the moment.


Yet another reminder of our humanness...

Wednesday, December 12, 2007

Gettin' off the juice, 'roids, Arnies, junk or whatever you want to call it

Okay, I know they aren't the same thing but it wouldn't be as much fun to say, "Gettin' off the corticosteroids".

I mentioned yesterday that Violet was put on Prednisone again (hopefully for the last time in her life). She is an absolute wreck. It is 30mg of pure madness. Her personality has totally changed and she is a poor, helpless, little monster. She has very little impulse control (even less than her normal toddlerness) and she cries about everything. I know that some families have to deal with mind and behavior altering drugs on a regular basis and I just can't imagine. I feel badly for her because she recognizes that she is out of control, but there still has to be an expectation of appropriate behavior. Just a day or two more...

Anara, on the other hand, is doing great. As long as I set the oven timer to remind myself to catheterize her on time things will be okay. A couple times I haven't set the timer for myself and then panicked when I remembered to look at the clock. Thankfully I haven't missed the mark by more than 15 min. but that could make a big difference considering we aren't moving to a 2 hour schedule until next month. Next week Anara will have a Mag 3 renal ultrasound to check out her kidney function and make sure there is no more reflux.

I know I know - 3 posts in two days - don't worry it probably won't happen again.

Almost Christmas...almost cookies...


This morning Violet had a desire to bake some cookies. We haven't baked cookies since coming home from the hospital and although I really didn't care to dirty the kitchen, I remembered a gift we received and thought it was time to employ it. We embarked on the tear apart sugar cookie gift, and after Violet adjusted to the fact that there was nothing to stir, she enjoyed tearing the dough on the perforated edges. She wasn't satisfied with just tearing the dough and putting the squares on the cookie sheet so she suggested we make some changes. "Mama, let's put some chocolate chips on them." I got her a bag of chocolate chips and she started adding them to the dough squares. After a few minutes of adding chocolate chips and mashing the dough, she decided that we needed some red hots. In the meantime, I decided that my pan of squares needed something more too. I got one of Anara's new syringes and melted some peanut butter. I sucked the peanut butter into the syringe and filled the insides of my pan of cookies. I probably won't be able to use that syringe to irrigate Anara but it's okay because we have plenty.

Tuesday, December 11, 2007

8 - 6 = 2

Only two tubes left - the suprapubic and the g-tube. The suprapubic should come out after Christmas and who knows when the g-tube will come out - that is up to Anara. She is not really interested in food and still depends on the tube for most of her calories. Yesterday we went to the urology clinic to have the one remaining ureteral stent removed. She seems to be draining and holding urine well between catheterizing.

Violet had an appointment with the pulmonologist yesterday and she timed her current illness perfectly. She performed for the Dr. and ended up having her oxygen level checked and we came home on prednisone. I was a little disappointed that she has to have oral steroids and tried to convince her MD otherwise. This just seemed like normal Violet cold to us. Actually it probably is normal Violet sickness but we have never had a pulmonology appointment coincide with it.

Last Friday night we decided to take Anara on her 1st non-hospital outing. We went downtown to see the lights and walk around. She loved being out riding in the stroller and car, and it was fun to have her out and feel like an almost normal family again.

1st car seat ride P.S. (post surgery)

1st restaurant P.S.

1 second the hat was left on

1st Christmas light show ever

Thursday, December 06, 2007

New dog old tricks

We went into surgery Tuesday with starry eyes. It was the surgery that would end this season and finally return things to the way they used to be... I had Anara's backpack packed with a shirt, pants, socks, shoes, bottle and we had the car seat ready. We were pretty excited about our "quick" procedure.

The ambulance was scheduled to pick us up at 11:30am but still had not arrived at 12:10. We arrived at the hospital at 12:30, checked in, and laid Anara in a hospital crib. The minute the rails (jail cell bars) went up and locked into place Anara burst into a scream that would last at least 30 min. Anara's surgery was scheduled for 2:00pm and they finally came and got her around 3:45pm.

She was still sleeping when we went into the recovery room about 6:30pm. When she woke up she was begging for water and drank a small amount. She threw up immediately and got some IV Zofran. She continued to throw up every time she had water Tuesday night. She was very sleepy and fragile after surgery and we didn't want to move her too much. She left the hospital the same way she came in - strapped to a board and wearing only a hospital smock (so much for our big plans).

Our expectations weren't a result of total naivete. We were told that Anara might actually walk out of the hospital (I guess other kids have) and had no idea that she would be so weak and wimpy. We expected she might have a little muscle weakness, but discounted the anesthetic effect and the fact that she hadn't been even held upright for almost 7 weeks.

When we got home she was a little more awake and was enjoying being able to be held. We were excited to be able hold her upright and tried to get her to put her feet down. She was so wobbly and shaky - not only her muscles but even just holding her head still and upright.

Yesterday I was a little more brave with Anara. I put her on the floor and asked her if she wanted to crawl. She said yes and rolled herself over only to find that she couldn't even push up with her arms. She just laid flat on her stomach and pushed herself forward with her feet, dragging her bags behind her. She was able to bear weight on her legs for short intervals but was still extremely shaky and off-balance. She couldn't even sit unassisted because of the balance issue (and maybe trunk weakness ?).

But today.... Today she sits by herself (pillows behind her just in case) for short periods. Today she crawls (funny as it may look). Today she still doesn't walk or bear much weight but we are progressing fast.

Even though Tuesday didn't bring normalcy and wasn't the "end", I do realize that it was a major step. We are left with only 3 tubes (SPT, G-tube, 1 Ureteral Stent) and our appendicovesicostomy.

We are currently on a 1.5 hour catheterizing schedule and will work have worked up to a 2 hour schedule by this time next month. We are going very slow since bowel isn't as stretchy as bladder tissue and we don't want to risk perforating her reservoir. She is hooked up to a drainage bag at night so that we don't have to continue the 1.5 hour cath. schedule through the night. Hopefully someday her reservoir will be able to go 8 hours at night - hopefully.

Here is a video from today. Anara is crawling pretty well and Violet is excited to have her playmate back. You can see Anara's ureteral stent bag tucked into the back of her pants.

video

Tuesday, December 04, 2007

Pic Fix

Anara's procedure today was another successful one. We'll post more details on how everything went later (maybe). Until then, thanks again for all the prayers and encouragement. Anara is home, external fixator is gone and she's already loving it.

Clowning with stickers before surgery.
Mama holding her two babies.

Pizza party to celebrate the homecoming.

Look at me!

Thank you, God!

Goodbye Fixator

We are scheduled for surgery at 2:00pm for fixator removal. If the x-rays are satisfactory after surgery then we will come home without hardware. If the orthopedic surgeon isn't happy then we will have some kind of brace or cast. Unfortunately I don't think we will be losing any of the tubes today, but we will see. Surely they have some secrets to letting a toddler lose with 3 tubes and drainage bags ;) Tonight I will try and post a picture of untethered Anara.

Wednesday, November 28, 2007

Yakety-Yak

One day Violet was in the bathroom and she said, "Mama, I need some privacy please." So I walked out of the bathroom and shut the door. Nate and I were sitting at the table and we kept hearing Violet say, "Darn it, darn it, darn it" (it sounded like "down it") and I said, "Violet, don't say that word okay?" Violet replied, "Mama, but you say it all the time. You do." - touche

Today Violet was having trouble falling asleep for her nap. I told her that if she would lay down and go to sleep then when she woke up she could watch Mickey and Minnie. She took a very short nap and I brought her downstairs. We were playing and coloring when she asked to watch Mickey Mouse. I told her that she could watch it later when I was able to move Anara to the living room. She quickly replied, "Mama, you said I could watch it after I waked up - you said that Mama." Whoops - she was right, I said that.

Yesterday I was trying to do dishes and Violet kept asking me about an advent treat calendar she had received from a Grandma. I tried to explain it to her and tell her that we had to wait a few more days to start opening the windows but she persisted with her questioning (I am pretty sure that she can sense chocolate in the room). I finally gave her a dumb answer like, "Vi, we have to wait until Jesus is ready to come before we start opening the boxes." She looked at me dumbfounded and said, "But Mama, Jesus is already here." Wow! How could I argue with that? I let her open a box and eat the chocolate.

Yesterday I was trying to get lunch ready and Violet came to me and said, "Mama, Anara just said 'More cracker.'" I told Violet that Anara would have to wait until lunch (I doubt that Anara really said that anyway) and Violet replied, "Tell that to Anara."

Yesterday I took the recycling out to the porch and an old neighbor walked by. I chatted with him for a few minutes since we hadn't seen him in a while. When I came in Violet asked me who I was talking to. I told her that I was talking to Harold. A few hours later we were having lunch and listening to Christmas music. One of the songs said "herald" and Violet got excited and said, "Oh, she just said 'Harold!' Is that what you just talked to?"

Lately I have utilizing what might be a bad mom trick. I have been asking Violet to perform for people with bribes. (I must have inherited this trait because when I was little I got a Nintendo game for trying to water ski just one more time and a waterbed for no cavities when I was 10) The other day I offered her chocolate for reciting something from memory. This morning she said, "Mama, I will say Luke 2 if you give me 2 chocolate chips." Whoops!

"Mama, Anara wants some water down her tube."

We have been Mr. Rogers fans for a while now - it was one of the first shows that we ever let Violet watch. About a month ago, Mr. Rogers put on a mask in one of the episodes. Violet started shaking and wanted us to shut it off immediately. I shut it off and deleted that episode and tried to explain that she never had to watch it again, but Violet hasn't watched him in weeks. Last night I wanted to buy some time with the TV and turned on Mr. Rogers. I explained that he wasn't going to put the mask on again. A few minutes into the show I heard Violet standing over Anara saying this, "Anara, do you like Mr. Rogers? Mr. Rogers is nice. He likes you Anara. He isn't going to put a mask on anymore. He loves you." I thought it was cute and appropriately therapeutic for Violet to reassure herself by encouraging Anara.

Tuesday, November 27, 2007

Reputation

I think I have compromised my reputation of being a consistent blogger - bummer. I can't seem to find the time to sit down and form complete thoughts about life right now. Things are going well but they are just abnormal enough to disrupt the ebb and flow that we are used to. This is the first official week that I have been home without additional support. We are doing pretty well. There is dirty laundry and a sink and counter full of dirty dishes, but when isn't that the case?

I will highlight a few recent happenings with photos (and spare myself the summarizing recap).


Waiting in the cold for the downtown tree lighting

Violet and Daddy watching the entertainment

The Circle before the lighting

After

Anara loves hats

Our little deer

Interesting cupholder

Friday, November 23, 2007

Finally a grownup

We hosted our 1st Thanksgiving meal yesterday and I feel that I have finally transitioned into adulthood. Actually, it probably wasn't official since I didn't prepare the dinner or cook the turkey. Since Anara can't be transported, Nate's family brought Thanksgiving to us. We squeezed around our dining room table in our smallish house and enjoyed a feast together while Anara sang and talked from the crib right next to the table. The girls really enjoyed the company and Anara loved being entertained by grandparents, aunts, and uncles.

I forgot to post the other day after Anara's MD appt. All our visits went well and everyone thinks she is doing great. The morning after the appt. (Wed) we woke up to Anara's stents disconnected and her Monti tube pulled out of her stoma - someone had busy hands during the night. We called her urologist and ended up taking another ambulance ride to Riley to have things put back together.

Sleep has definitely been the biggest challenge since coming home but we are managing well. It was easier at the hospital when the expectation was no sleep and I was in a constant state of alert. Every other night I was relieved and able to come home and sleep peacefully. Peaceful sleep is not to be had right now because Anara is not able to sleep. She wakes up anywhere from 5 - 11 times during the night and you have to check her because there could be so many different causes (tubes disconnected resulting in wet bed, tubes occluded, gas, spasms, hunger, fear, or nothing). Some nights are better than others and Nate and I try to take turns checking things out. Only two more weeks!

We didn't get any great pictures yesterday, but you get the idea...

Anara helping out with Thanksgiving preparations

Uncle Jon, Aunt Rachel, Cousin Noble, and Violet

Noble close-up

Vi stole time with the Bionicles while Guy was distracted with Nintendo

Anara at the center of festivities

Tuesday, November 20, 2007

Sorry Grandma S.

My grandma told me that with all the help we have had there is really no excuse not to post more to the blog. She is partially correct. I should have more time to blog, but I have been preoccupying myself with other tasks like: sorting and filing the bills and paperwork dating back to April (last filed just before we went to get Anara), filling out Anara's final citizenship application, paying bills, making phone calls, and taking care of the neighbor kids - just the normal tasks that await you after you have been gone for a little while.

This morning Aunt Nicole is coming to play with Violet while we take Anara to her orthopedic and urology clinic visits. The limousine (ambulance) is picking us up this morning and bringing us home this afternoon. I will post the appt. outcomes later today.

Below are some pictures summarizing the most recent happenings in our home:

"I already told you, just put it through my tube."

Grandma and Violet

She might not drink it but at least she is smiling

Kind of like Twister but not quite

Grandma is brave enough to hold Anara

Violet and Doodlebug having a slumber party

Watching Michele's DVD player together

Kendra, I don't have an email for you so maybe this will work ;) I was going to call but it is pretty early and who knows when I will have the opportunity for a phone call this afternoon. I hope Simeon is doing well. I have been thinking about you guys. I will call someone at some point to find out how he is doing. Hope you are well!!

Tuesday, November 13, 2007

Busy, Busy, Busy

Anara watching TV from the coffee table

So far this week I have been bustling about cleaning, unpacking, and reorganizing. The downstairs is almost spotless (for a few minutes) and most of the clutter has been relocated to the upstairs (save that for later). I am also trying to complete the last portion of Anara's immigration paperwork. Hopefully she will be a US citizen by the new year.

Anara is doing well and we are very thankful that there have been no snafus or complications with her home care. Anara is usually happy and shows no signs of infection. She is still on antibiotics since she has pins and tubes. We have been relying heavily on the TV and a borrowed DVD player to entertain her because it is difficult to sit by her and play all day. Anara is eating very little solid food. She is getting almost all her calories from formula and ends up getting some through her tube most feedings. I am hoping that once she can sit in a high chair again we won't have to depend so heavily on her feeding tube. I am thankful that we did it because I would be pulling my hair out in frustration without it.

I am doing pretty well with the "Anara Maintenance" schedule but at times it would be convenient if I had three arms instead of two. It would be easier to have three arms when using the feeding tube so that I can open her button with two hands and hold the syringe with the third. It would also be easier to have three arms when irrigating her SP tube. It is hard to push in and pull back on the large syringe while holding it in place and clamping the Monti closed, but it isn't impossible. It would also be easier to move her, pick her up, or clean her with a third arm to hold her drain tubes. We really are doing well. My brother, Bryan, has been here to help during the days. It hasn't seemed too overwhelming to be home. It is less stressful without a monitor to make me nervous about respiratory and heart rates. Even the middle of the night maintenance has gone quickly and smoothly.

Violet is doing pretty well. She has a weird rash on her face (around her mouth) and woke up this morning with a "tummy ache". She told me at 5:30am that she had a tummy ache. I thought maybe she didn't really mean it so I helped her back to sleep. When she woke up again she started crying and said, "I don't like this tummy ache" and she has been on the couch since I got her out of bed. Hopefully it doesn't turn out to be anything.

Listening to Daddy's leg with a stethoscope and sporting her weird rash goatee

Sunday, November 11, 2007

"There's no place like home. There's no place like home."

I was just up doing some "Anara maintenance" and thought I would post while she finishes her bottle. We came home Friday around noon. Anara was smiley during the ambulance ride and has been pretty happy at home. She gets a little frustrated sometimes but seems content for the most part. She has been getting lots of attention, reading books, playing with toys, and watching DVD's. She is confined to her back in a crib but she still does lots of moving - see for yourself.

video

I will try to post more details tomorrow.

Thursday, November 08, 2007

Tomorrow tomorrow, I love you tomorrow

We are all set to be discharged between 11:00 and 12:30 tomorrow. Of course we know that there is always the possibility for delay but we are praying for no surprises and for Anara to be healthy and able to be cared for at home.

We have one home health care business for our GI supplies, another company for our GU supplies, and of course the ambulance agency to provide transport to and from the hospital. It will be an interesting next few weeks. I can't wait to get a date for the removal of the hardware and tubes. It will be considered another surgery - Anara will anesthetized and while she is under we will practice catheterizing her through her channel. They will also remove the fixator, the pins, ureteral stents, and the tubes.

Anara hasn't needed any morphine or Valium for a couple days. We have been able to manage her pain with Tylenol with codeine and Ditropan (to manage bladder spasms). She has been eating great since we put in the G-tube. It's very Anara-ish to starve herself into a G-tube and then decide to eat on her own after we take it to the next level. She is still pretty happy. I would be itchy, uncomfortable, and grumpy after laying in the same position for 3 weeks, but she is still fairly entertained. I am hoping that the change in scenery won't make her more frustrated.

I can't think of anything else to post. Is there anything anyone is dying to know??

Tuesday, November 06, 2007

Wires and tubes and metal! Oh my!

I am trying to use today to get things prepared and all my ducks in a row to go home. We will probably be here a few more days but I want to make sure I am totally ready. I know the G-tube will be a piece of cake after a while, but I still don't get feeding calculations and such. I have been annoying nurses, doctors and home care people trying to get all medications, tubes, and schedules figured out - it feels like a lot of stuff to keep track of and I am very thankful it's mostly temporary.

We will have been in the hospital 3 weeks on Thursday and it seems like we checked in forever ago. Some of these families have been here months and others years. Every day I am thankful that we have an end in sight and that we are going home healthy. I can't imagine having to deal with a child with a terminal illness or a dehabilitating condition, but these families are amazing and they make it through.

Okay, time to flush some tubes.

Monday, November 05, 2007

Surgery Successful

Amanda is too wiped out to post, so I'm covering for her tonight. This is just a quick update to say that Anara's surgery today to install, er, insert (what's the right term?) a feeding tube (G tube) was successful. The actual procedure was as quick as we were told it would be, but it was a long afternoon, nevertheless. Amanda helped give Anara her first feeding through the tube, which was an ounce of formula. She's been a little overwhelmed today at the thought of bringing Anara home and doing all of these things for her here, but we both know that we can stay at the hospital as long as we need to, and that we'll have plenty of support and help once we do come home.

Thanks again, everyone, for your prayers. The doctors and nurses all continue to say that Anara looks great.

Just eat already

Well, today is the day. Anara is scheduled for a PEG tube placement at 12:30. I kept telling her that she needed to eat or else and I guess now we will experience the "or else". I know that it is minimally invasive and that the surgical "insult" is very minor. However, it is one more round of anesthesiology and obviously there are always risks. Last night I couldn't sleep because I was worried that maybe it wasn't necessary, maybe I was duped into making a bad decision, and what if Anara doesn't do as well as we hope. This morning I am a little more rational and feel that it is indeed the best decision at this point and that God is still sovereign. It kind of feels like one more thing when we already have 4 tubes to contend with, but it might actually end up alleviating some of our home care burden.

Anara has been doing pretty well as far as pain. She hasn't had any morphine in several days and has been able to spread out her Valium and T3. Last night was a little rough. I think she must have been having spasms because she was really uncomfortable and kept rocking herself and crying. We gave her the Tylenol and Valium and after about 45min. she calmed down and went back to sleep. She has been pretty happy this morning even though she has been NPO (Latin for "nothing by mouth") since midnight. She woke up absolutely soaked because three tubes had been disconnected when the doctors rounded earlier (didn't quite get things put back together after their prodding) but she was still happy. I held her awkwardly while the nurse changed the bedding and she seemed to calm down after a minute or so (but her fixator was jabbing me).

I think that is everything for today. I will try and post again after surgery and maybe even put up some pictures. Thanks for your prayers.

Friday, November 02, 2007

Gastronomical

Today the dietitian told us that Anara is not getting adequate nutrition by mouth. She has never been super interested in eating and seems pretty indifferent about it right now. We have always struggled to feed her and much to our nutritionist's dismay, have had to be forceful at times. Our goal was always to get her weight up to a level that her doctor was comfortable with for surgery. The suggestion was made to place a gastronomy tube (g-tube, GT, feeding tube) and help supplement her nutrition.

At first I was pretty hesitant, but after consulting several medical professionals and weighing the pros and cons, I am much more accepting of this idea. Nate was pretty open to it from the moment I called him and explained the situation. We both have clear memories of mealtime battles and the pressure of getting enough calories in her. A GT would alleviate the pressure on us to feed her, the pressure on her to eat, and the worry that she is not getting the nutrition that she needs to heal. Anara's doctor wants to ensure the success of her major surgery and good nutrition is one of the primary ways to maximize her recuperation. Her surgeon said that a GT placement would be 1/50th of the procedure that she had a couple weeks ago. With everything that her body has been through and all that we are expecting her to do, it seems the only course of action. There are always risks associated and of course she will have to undergo general anesthesia again, but the benefits seem to outweigh the risks.

The nurse practitioner involved in the conversation said that she has seen miraculous results from GT's. She said that some kids with eating aversions develop appropriate eating habits. The dietitian thinks that once Anara experiences adequate calories and her stomach stretches, she might have more hunger sensation and become a better eater. Obviously we would love to see Anara become a competent eater and perhaps this will bring us one step closer to that goal. In the meantime it will provide the nutrition necessary for her to heal quickly and completely.

Thanks for your continued encouragement and prayers.

Thursday, November 01, 2007

Finally some pictures

Anara holding her PCA button (giving herself a hit of morphine)


Anara holding "Ermie"(wormy) and "boo" (bear)


Really happy about watching a movie up close



Reading a card from the Smith kids



Just a little kiss

Anara's costume



Shocked about something



Her holiday pinafore



Unhappy princess

Still not going to smile