Thursday, March 29, 2012

Flower Children

So, this morning was one of those mornings when you feel like SuperMom - only to be quickly reminded that you are, in fact, a mere mortal. Owen slept a little later than normal, so everything was going much more smoothly than usual. I managed to shower, dress and have a cup of coffee before any little ones woke up; made Owen scrambled eggs for breakfast, and a little strawberry and banana fruit salad (this is pretty special for a weekday - he usually has yogurt or a bagel). Owen and I talked and giggled through breakfast, and I gave Evelyn her medicine and started her breakfast in bed. She was still asleep, and we usually like to let her sleep in if possible.
Owen continued to be cute, playing and bouncing around the house, and it felt like things were organized and in order. I threw the laundry around and went to check on Evelyn (i always have a monitor with me, but like to pop in and out in the morning so I don't miss her waking up). Well...instead of feeding Evelyn, I fed the bed. For those of you with experience in the special needs world, and with feeding pumps in particular - you know what I mean. For everyone else - there is a machine called a feeding pump that, well, connects to the feeding tube in your tummy and pumps in food - liquid food - often formula not dissimilar to baby formula. It is 'nutritionally complete', but since it isn't meant to be consumed orally, it DOES NOT TASTE OR SMELL NICE. It is SO gross. I might prefer the smell of poop to the smell of formula. Anyways, I apparently didn't connect things quite right, so the pump just slowly pumped all of the formula right into the bed. My lack of skill in this area is yet another motivator to make more Evelyn meals this weekend - no feeding pump required! So, our sweet nurse found me disrobing Evelyn and her bed to get everything cleaned up. The kicker? Evs slept through all the formula trickling onto her pajamas and bed, and woke up smiling as I was cleaning her up.
Well, not to be deterred - sometimes something like feeding the bed would be just enough to turn the day sour - I decided we were in fact going to do plants today as planned. We all got ready, jumped in the car and went to Home Depot. It is one of the closest planty places near us, and is really easy to navigate with a wheelchair. This was Evelyn's first outing since coming home from the hospital, and it really went well. She chose pink, purple, white and blue flowers for our planters (Owen helped!) and we also bought all kinds of vegetables to plant in our garden in the backyard. Then, we came home, ate lunch and started planting.

We did good work, and got a little dirty. :) Of note, is that in these pictures, Evelyn IS awake, and enjoying getting the plants out of their containers and into the soil. In bright sunlight her glasses go into tint mode, and she often doesn't open her eyes as wide because they are a little sensitive to bright light. I'm not sure how much she enjoyed getting dirty, but she had fun. After we finished planting, she decided to doze a little outside in the sun. It really was a beautiful day to be outside.
Thanks to so many kind and generous friends and neighbors, we are getting spoiled with delicious meals - and though I feel a little funny about it sometimes, I can honestly say that it has been so nice to sit down together at the table without having rushed around to pull dinner together - and with less cleanup. It has been an extra little thing that has helped make the transition home easier, and we appreciate it and all of you SO much!
Oh, and in case anyone is wondering why we still have a Christmas-y wreath on our door; the picture at the top shows some teeny little bird eggs nestled in a cozy little nest that is tucked between our wreath and our front door. So until the eggs hatch and the little birdies move along, the wreath stays. :)

Wednesday, March 28, 2012

Give Peas a Chance

Today was our first full day at home in over twenty days. :) Wow. It was pretty much business as usual: Daniel went to work, Owen went to 'school', Nurse Ivey came over and we all just did our thing. That included lots of cuddles for Evelyn and me, groceries, laundry and getting more of these medical supplies organized.

Evelyn was clearly glad to be home, but is still adjusting (understandably) - so while she was wide awake all day, she wasn't always overly cheerful. Not grouchy, per se, just settling in. Owen, on the other hand, was SO joyful. Even his teachers at mother's morning out noticed how much happier he was today. I know he loved being with Pop and CC these last few weeks, but I can also tell that he feels really good about everyone being back at home. Today while he was 'napping' I could hear him through the monitor - listing everyone that lives in our house. :)

While we were in the hospital, spring came to Atlanta, so there is all kinds of stuff to be done! Evelyn's first post-hospital outing is going to be a quick trip to Home Depot tomorrow to choose some flowers for our front door planters, as well as vegetables for the garden. We are also planning some clothes shopping soon - once I take stock of what each kiddo has that fits from last year. This weekend we are planning some kind of family thing; not sure what yet, but we want to get outside and do something fun. Daniel and I are also planning to buy a van in the next week or so, make more (lowfat) Evelyn meals, and go on a date. All these plans - but if Evelyn and Owen are happy, healthy and settled, then its fine if nothing gets done.

My goal is to focus on the task at hand (whatever it may be) and not get overwhelmed with the ginormous to-do list in my head. When we come home from a hospital stay I always feel so happy, relieved, thankful - and then I start to think about all the chores and 'life stuff' that I had blocked out during our stay - and I get really stressed about it all. Here's to hoping I can just live in the moment (and hopefully take a few naps!) these next couple of weeks. I think the title of this post (stolen from Owen's tshirt) is a pretty good message to me (us) - we need to give peace a chance. We should try and overlook all the mess (both literal and metaphorical) and try to just enjoy being a family.

Tuesday, March 27, 2012


Hooray! Evelyn was absolutely thrilled to leave the hospital and jump in the car. All the way home we kind of marveled at how easy her breathing was. Her car seat has always been a problem because it was so tough to keep her head 'just so' - but no worries now! She just relaxed, looked out the window, and smiled all the way home.

This afternoon at home was hectic - in part because our home equipment and nursing companies all had people here organizing things, dropping off tons of stuff, and bustling around to get thing settled. As soon I got one bag unpacked, another would arrive. :) We are completely exhausted, and were SO thankful for the fabulous lasagna Julie dropped off this evening. It is going to take a couple of weeks for the dust to settle - from a sleep, organization and new routines standpoint - but for whatever reason it feels in many ways like Evs has always had a trach. I guess that means we're pretty comfortable with it. :) Y'all, parts of our house look like a hospital - and it probably looks really intimidating from the outside looking in - but after a very short while it all becomes second nature.

Thank you guys for following our hospital journey - for praying and sending good thoughts and supporting us in so many different ways. I hope to keep updating regularly; between Evelyn and Owen there should always be some good material to write about. For now though, it is bedtime!

Sunday, March 25, 2012

Home Stretch!

Another unexciting day - and when you're in the hospital, hoping to go home soon - that is a very very good thing!

I woke up with Owen this morning, and we eschewed church in favor of chasing geese and playing in the sand at the park. I know, I know - but we are really looking forward to going to church next weekend as a family - and Owen and church don't mix, unless he's in the nursery, and sending him to an unfamiliar nursery at his grandparent's church doesn't seem like quality 'mommy-owen' time to me. But anyways, after the park we went to Target to procure, among other things "blue toothpaste!". That means we bought toothpaste that came in a blue box, and may or may not actually be blue. :) Then we went to Dairy Queen, for an exceedingly healthy lunch. Owen's menu: Hot dog (no bun), applesauce, milk, and a mini-blizzard with m&m's. This was basically paradise for Owen.

Daniel watched Evs watch the inside of her eyelids for several hours, and then headed to our house to do more organizing. While we were gone, our friend Martha came to hang with Evelyn - and of course Evs woke up for Martha. :) So they read stories and braided hair and gossiped about boys and such. Apparently she and Evelyn agree that rock climbing is SO not their thing. After Owen went down for his nap I ran over to our house to meet Daniel. Basically we put away clean laundry, steamed Evs carpet (thanks Rocky...), and Daniel put together our new medical cart (a rolling kitchen island in disguise).

When we get home Tuesday with Evelyn, we will have a completely full car - full of junk - but sadly mostly junk we will have to keep - and mostly junk that isn't cute - so we will have to tuck it away here and there so our house doesn't look like a hospital. That's the part of hospital stays that usually does me in; until my mild OCD kicks in and I organize the heck out of it. Then everyone feels better and takes a nap. :) Usually Evelyn takes a nap right away. Honestly I expect we won't see her little eyeballs for a good 36 hours after we get home.

Tonight I've been here with Evelyn, packing away more stuff in hopes of emptying the room enough that we will all actually fit in our car when it is time to go home. Seriously, we were going to buy a van last weekend (been planning it for two years) - got a bit delayed due to this hospital trip - but I'm not totally convinced we won't have to go get one Tues morning in order to get ourselves home. :) I'm kidding. mostly. I think.

Daniel went to his parent's house tonight - and I have a strong feeling that he is now in that euphoric state known as "post smoked ribs consumption heaven". Jerry got a smoker recently - and he uses it well. I'm a little jealous. On the topic of food, two very important things I'm thankful for: 1, I forgot that Maggiano's is less than ten minutes from the hospital and 2, I didn't notice that they have Ben&Jerry's in the cafeteria until tonight. My waistline appreciates my lack of awareness.

Once we're home from the hospital, I think these posts will be shorter and more convoluted, but I plan to keep writing. It has been really therapeutic for me, and fun, and I appreciate having the opportunity to tell whoever is reading a little more about our life, and about our fabulous children.


Friday, March 23, 2012

Counting Down and Rooming In

So, Daniel has the cute Evelyn pics from today on his phone, so unfortunately I can't post them - but maybe when he reads this he will. :)

Including tonight we are down to four nights remaining in the hospital, barring any unforseen circumstances. Evelyn continues to do really well, and is feeling much better. She's even regaining some energy, as evidenced by skipping a nap here and there. I think once we get home she'll probably do a lot of sleeping for a couple of days, and then be ready to hit the ground running. I'm excited to get out into the world and do some fun things with her (and Owen). We are fortunate that, for at least part of the year, our private insurance covers our nurses at home - and in that situation our nurses are allowed to get out and about with Evelyn. So theoretically Evs, her nurse and I can go to the park, go shopping, etc - which will be great. I feel really comfortable handling Evelyn's medical needs - including all the new trach stuff - but when I'm alone with Evs and Owen it can get a little busy, so its nice to have an extra set of hands.

Tonight and tomorrow I am 'rooming in' which means I'm providing all of Evelyn's care, under the supervision of the nurses and respiratory therapists. So far so good. :) It is a good opportunity to practice everything yet again, and it really is nice to feel comfortable with everything before we go home. Tomorrow night Daniel will begin his 24 hour shift - and I'm sure he will do a great job.

I think I can speak for Daniel too when I say that we are SO happy the end is in sight, and SO thankful that this has all gone smoothly, and SO completely exhausted. :) A friend noted that all parents of small children are chronically tired - and she's right - so sleeping in our own beds in a few days is going to be awesome.

Your thoughts and prayers continue to carry us through - we feel like we have a really good life, and that is because so many wonderful people love us, pray for us, and embrace our daughter and our family. So thanks, again, for being such kind and caring people.

A few shout outs:

The NEIGHBORS! Printha, Lucy, Amy - you guys are so sweet to jump in and help with the animals, mail and packages, logistics, cleaning, etc - thank you!

The VISITORS! Thank you, SO much, for coming to see us in the hospital. I hope I'm not leaving anyone out: Jerry, CC, John, Sarah and Sarah's mom, Mary, Alicia, Martha, Jan, Karen, Jacque, Memri, Megan, Megan, Caro, Jonathan, Ivey, Jennifer, Chris, Melissa (and kiddos), Julie, H.L., Elaine... and more I think? Some of you have visited with Evelyn while Daniel or I did training, some of you have visited more than once, and all of you have brightened our days with your friendly faces.

The FRIENDS from afar! Thank you for the cards, letters, packages and love you've sent us; we appreciate you and are thankful to have you in our corner.

The FAMILY! There's not much I can say; you guys are amazing, and we thank God every day for each one of you - including little miss Charlotte and her squishy cheeks - twenty minutes with that little lady was the best remedy for a long day at the hospital.

The HUSBAND! Even when I've only seen you for a grand total of about 5 hours in two weeks, I still love ya. kind of a lot. :)

g'night guys, and thanks again for walking with us.

Thursday, March 22, 2012

My sweet children

So, Owen picked those flowers for Evelyn on a recent trip to the park with CC. He likes to pick all the dandelions, and gives those to any and everybody - but the purple flowers (peepul fliers) are for Evelyn. Owen has been handling this hospital stay much better than one might expect - given that he's in the midst of the terrible twos. In so many ways he is like a first child for us; we've certainly been active parents with Evelyn, but there a lot of issues that need addressing with Owen as he develops that weren't issues with Evs - like climbing the furniture, for example. :) We can tell that Owen is a little stressed by all of this because he kind of lets it all out as soon as I walk in the door - acting out, misbehaving, having a tantrum or two. His worst behavior isn't really too terrible, but it has been a little challenging maintaining discipline while being sensitive to the situation. Luckily we have Pop and CC to learn from, and having Owen stay in one place through this hospitalization gives him some much needed stability. It also helps that he often gets a cookie after lunch - a new routine established by CC. :)
Evelyn has had another great day; she's very gassy (don't tell her I put that on the internet!) but is working on that... Today she spent several hours in her wheelchair - we looked out the window, read some stories, did her hair and just had some mommy and Evelyn time. She also got to try out an HME today - a 'heat moisture exchange' attachment to her trach. It is a little bowtie shaped attachment that does the work of a heater/humidifier, but without tubes, machines or wires. There are filters, and a small chamber that collects condensation from exhalations - so it basically functions as a nose, and is often referred to as such. Her pancreas continues to return to normal, and she started a new lowfat formula today. After we return home, we will make more 'Evelyn meals' that follow a lower fat model (she was on modified Atkins to help with seizures - but we all agreed avoiding pancreatitis was a good reason to stop).
The word 'Tuesday' has been utterd about a zillion times, and we'll be chanting it all weekend - we are all SO ready to go home and start returning to a normal routine. At some point I know that all the pent up stress we're experiencing is going to start leaking out - I'm probably going to cry for no clear reason, snap at my husband, and worry about something completely innocuous with Evelyn - but over the next couple of weeks we'll be back to ourselves. I love my little kiddos, and I will be so glad to get them both under the same roof. Having undivided time with each of them is nice, but leaving one to be with the other isn't easy.
I have to throw this in though - every single day I feel SO fortunate; to spend all day every day just being with my children. When I walk by hospital rooms with little babies all alone, I'm reminded of how lucky we are that I'm not working and can be with Evelyn and Owen when they need me.

A Very Good Day

So, we woke up this morning to all kinds of good things. First and foremost, Evelyn's pancreatic enzyme levels are dropping - which means her pancreatitis is going away! Also of note was that she was clearly feeling LOTS better. She mostly slept this morning, kind of soaking up the 'absence of discomfort' and just recuperating. Also, last night Evelyn spent two hours on a heated trach collar (which means a tube that humidifies and heats the air, but provides no breathing support). Today she did three hours this morning and four hours this evening - and tomorrow she will go all day long with no breathing support! By Friday she should be using a little 'nose' - which is a simpler form of heat and humdification - so she will be wireless again during the day. We will still bring a ventilator home, which we will use at night as a cpap machine - giving her a light but constant flow of air into her trach which will enhance each breath she takes. This is good extra support, and also a nice safety in the event that Evelyn gets sick and needs extra breathing help. Having a ventilator at home, even if we could technically get away with not using it, makes everything safer because it gives a lot of room to help Evelyn if and when she needs it. Also, tomorrow Evelyn will start eating via her gtube again instead of via IV nutrition. Because her enzyme levels are improving we will not have to use a j tube, but we will use a lowfat diet just to be nice to her pancreas for a while.
After a morning of rest for Evelyn and lots of good news, we had a busy afternoon and evening. Evelyn had a few housekeeping issues to attend to, including but not limited to a PICC dressing change (pulling off the tape around her picc line, cleaning the area and replacing the tape) which takes at least 30 minutes, trach tie change, a bath, and getting into her wheelchair for a little while. By the time she got to her wheelchair she was worn out - but she still looks pretty cute. :)
Our ICU doctor agrees with Tuesday as our tentative discharge date, so we are starting to see the light at the end of the tunnel. Hoping tomorrow brings more good pancreatic enzyme levels, more good breathing stuff, and a quiet entry into the weekend.

Tuesday, March 20, 2012

Treat the patient not the numbers.

One of the many things I love about most members of our medical team is their human approach. For many doctors it can be easy to look at and treat symptoms - almost forgetting that those symptoms are attached to a human being. We are fortunate to have specialists who take a more balanced approach.

The pancreatitis craziness is frustrating, and perplexing. Evelyn's enzyme levels are high (bad), but today she was looking much better, and I think I officially saw our first post-surgery smile. We are definitely going to have to take and post pictures tomorrow. Because her labwork wasn't great, a CT scan was ordered to get a good look at her pancreas and rule out any of the 'really really bad stuff'. Thankfully, her pancreas looked normal, as did the rest of her internal organs. Because of that, and because she seems to be doing fairly well, they've decided to start feeding her again - for a few days we will very slowly deliver (via feeding pump) formula (similar to pediasure) into her jejunum, which is the top of the small intestine. Sending the food directly to the intestine will give her pancreas a little more time to rest while working to resume normal intestinal function. After a few days (assuming her labwork improves and she handles it well) we will move to formula in her stomach, then resume a lowfat blended diet, and finally return to her regular food. Some of this process will likely happen after we've come home. I think everyone is hoping the pancreatitis goes away as quickly as it appeared.

As we work through that, we are still working towards Evelyn using her trach with no breathing support. Tonight she spent about two hours with absolutely no assistance, and tomorrow she will do two sessions for a total of four hours. We will ramp that up each day until we go home, and if they feel its appropriate we may work towards no support at night as well. I am officially done with trach training, so other than a family CPR class and a 'rooming in' session - I've done my homework. :) Later this week once our home equipment is delivered, I will spend 24hours providing all of Evelyn's care (mainly trach care) to demonstrate that I know what I'm doing and am capable of continuing her care at home. Daniel will do the same. Luckily I've been mostly doing that the whole time we've been at the hospital, so it will not be a problem. :)

Right now, if things go as planned, we will go home next Tuesday. Hooray! It isn't in our hands, but I really hope we achieve that timing. Today is day 13, so this is officially our longest hospital stay to date. Thankfully there have been a lot of positives during this stay, and while Evelyn and her pancreas have thrown us a curveball, in general things are good, so we are thankful.

Have a great night!

Monday, March 19, 2012

Wake Up and Sing

Well, today was rather uneventful for miss Evelyn. She is still struggling with pancreatitis; which can be pretty painful, so she slept a lot today. Her trach healing and breathing are still going excellently, and we will begin some 'heated trach collar trials' tomorrow - which means that she will spend some time off of cpap, breathing completely and totally independently. It is really a tiny step up from what she's already been doing, but is the next and final step towards 'wirelessness'. If her pancreatic enzymes still look wonky tomorrow then they will do a CT or MRI to get a good look at her pancreas. Due to a lot of air (gas) in her intestines, the ultrasound tech couldn't see her pancreas at all today.

Aside from a Daniel and Kim - led trach change, and more training for us, the only other things of note today were visitors. We continue to have the opportunity to visit with so many wonderful people, and today was no exception. This morning I had a really nice visit with a woman from church, and this afternoon Evelyn had a visit from Memri and Jacque from the Center for the Visually Impaired's BEGIN program.

Ms. Jacque was Evelyn's first vision therapist; she is also a musician, artist, professor at Morehouse, and is THE baby whisperer. Memri is a family counselor, cheerleader, motivator, and has the best dry wit in the south. These two women are both remarkable - when a baby is diagnosed with a vision impairment, and is fortunate enough to be referred to CVI, Memri and Jacque and the staff of the BEGIN program enfold that baby, and family, with love and hope. From one on one vision therapy, counseling for families, and Wake Up and Sing (the most wonderful music group ever) the services they provide are immeasurable - yet magically free of charge. Today Ms. Jacque brought 'little David' (her traveling guitar) and sang some songs for Evelyn, and Memri reminded Evelyn of just how wonderful she is, and how loved. There is a very rich peace and joy that you can't help but feel when you're around these two ladies, and in fact it became a 'must do' every Thursday for Evs and I to come to CVI for Wake Up and Sing - sometimes more for me than for Evelyn.

Having a connection to the Center for the Visually Impaired early in Evelyn's life was so valuable for our family. We met and made some very good friends, learned so many great skills for working and living with Evelyn, and most importantly - we learned that it was okay to be happy. For a while after receiving a tough diagnosis it seems like a betrayal to think about the mundane parts of life - after all, your child has *seizures* or *is developmentally delayed* or *is medically fragile* - and since managing all of that can easily consume your life, you start to think that that is all your life should be about. The simple act of coming to CVI and singing with our baby, talking to other parents and developing relationships reminded us that our lives should revolve around God, not Aicardi Syndrome. It was a place where everyone was dealing with the same kind of 'stuff', so if so-and-so got a haircut, maybe it was okay to think about things like haircuts and toenail polish and (in Daniel's case) GT football again.

I guess what I'm saying is that BEGIN is a very special place, and Jacque and Memri have something very special within them. If you know anyone of any age who is visually impaired, please tell them about CVI - they service people ranging from 0-100 years old (and older!). If you feel so inclined, consider making a donation of money or time; it is a very worthy cause.

Sunday, March 18, 2012

Giving Thanks

Given that it's been eleven days so far, and I think we might be at least a tad more than halfway done with this hospital adventure, and given there isn't anything remarkable to report on today, I'd like to say a ginormous thank you to a few people. Well, okay, more than a few people. :)

The thoughts and prayers of hundreds, possibly thousands - have really touched our hearts and continue to give Daniel, Evelyn, Owen and me energy, hope and strength. There really is great power in prayer, and I believe that that power is in giving those you're praying for the grace and peace to accept God's will.

Our wonderful, dear family. Claudia and Jerry (aka CC and Pop) have given up their empty nest temporarily to host whichever worn out, grouchy, and likely stinky parent walks in the door each night - and Claudia has been loving and caring for Owen all day every day while Daniel is at work and I'm at the hospital. Owen is a sweet little guy, and CC loves him - but chasing a two year old all day is no small feat - and we really are so grateful for her willingness to do so. Her servant's heart is an inspiration.

Aunt Megan and Auntie RoRo - so much energy and positivity and love - you guys keep me going; whether its spending time with one of our little ones so we can 'get stuff done' or just giving encouragment - you guys are awesome. And your husbands are pretty cool too. :)

Our other family near and far - we feel you with us. Thank you.

Our friends and church family. Wow. Whether its a visit, a phone call, an email or a meal - you've inundated us with love and support, and even those little 'likes' on facebook are a reminder that our family is thought of. I am so thankful to know so many wonderful people who are so willing and even eager to step into our world - even when it means hospitals and seizures and potentially scary stuff.

All of you, as I've thought so many times, are the reasons that Evelyn is thriving and joyful. You are the reason our family, in general, succeeds. Alone, just the four of us, we have faith and love and hope - but without you it would be so easy to lose sight of those things. Having you wonderful people in our lives nourishes us in a way we could never do for ourselves. You are extensions of God's grace - we love you, we need you, and we thank you.


Saturday, March 17, 2012

Rollercoaster of Love

*picture created by Will who attends our church with his family - he said he made most of the trees pink and purple because Evelyn always wears those colors. I think Will is a true artist in the making.

When the Red Hot Chili Peppers wrote that song, I doubt they intended for the title to be interpreted the way I'm about to, but oh well.

I think that our love for Evelyn causes us to ride the rollercoaster of life with her - including this hospital stay. On days when she's making good progress, feeling 'better' and looking like her sweet self, we're up. On days when she's not feeling so hot, we're down. Yesterday afternoon and evening were pretty 'down' for Evelyn and me. Evs continues to make great progress with trach healing and breathing independently, and Daniel and I are learning and practicing and feeling good about caring for her properly when we come home. Unfortunately, for no clear reason other than the stress of the surgery and extra medications, Evelyn has developed a mild case of pancreatitis. This is basically an inflammation of the pancreas, and is treated with stomach/bowel rest, and rest in general. It can be pretty painful, and has been bothering Evelyn some periodically throughout the last few days.

Yesterday we moved down to the TICU, and between stomach pain and other tummy issues Evs just didn't seem happy. She also had a lot of trouble sleeping last night; didn't really go to sleep until around 3am and was up again at 6. Because of her other tummy trouble the nurses and I were worried she might've contracted c-diff (a very nasty intestinal bacteria) - luckily she did not. But, prior to learning she was in the clear, Evs and I were both rolling downhill at top speed from all the sleep deprivation and worry (and in Evelyn's case, all the discomfort). It was one of those evenings where you're not very proud of yourself, because you feel so tired and so worried and so, basically, selfish in your fear that you lose all perspective.

The great gift though, is that in the midst of riding this rollercoaster it becomes so clear how steady God's presence is. Our weakness of spirit may cause us to ride the waves of our emotions, but we can rest a little easier knowing there is always a steady hand on our shoulder. I'm not proud of my imperfections, but I'm thankful that sometimes feeling so ridiculously miserable gives me a chance to see God more clearly, and be reassured.

Evelyn has had a better day today, and so have I. Pop and CC visited with Evs while Daniel and I took Owen to lunch and to the park (beautiful weather!), and then Owen and I came back to their house and both napped. Evs hung out with her Daddy, and is still not feeling super fabulous, but slowly the pancreatic enzymes are moving toward the normal range - and as they do so her discomfort should lessen.

Thank you so much to everyone who is praying, and thank you to those who have called or visited as well. It is so nice to see a friendly face walk into your hospital room, and I know it helps Evelyn to feel loved and supported, and to remind her that there is an end to this hospital stay and a life outside waiting for her.

Tomorrow I will be with Owen in the morning, then Auntie RoRo and Aunt Megan will hang with our children while Daniel and I go home to set up new storage for all Evelyn's accessories, and make more meals for her. I will be at the hospital Sunday night and Monday, and I'm looking forward to helping Evelyn get through these next couple days, bugging the doctors to keep us moving in the right direction, and getting one day closer to being at home again.


Thursday, March 15, 2012

Big Progress! and little challenges.

So guess what?!? Evelyn is officially off of ventilator support, and is receiving cpap (air blowing) with each breath she takes on her own. This means that probably within the next 24hours she may well be wireless. :) This also means she's a champ, because this is a 'fast wean' off of the vent.

As with any surgical procedure, the anaesthesia and sedation S L O W down the digestive tract - which means starting it back up can be a challenge. Sweet Evelyn is doing her best to help move things along (to put it delicately) but her tummy really hurts right now. We have a consult with her gastroenterologist set up so we should be able to talk with them sometime this afternoon to take more action. Basically, she's full of gas.

In other news, Evs has been awake all day, and given the gas issue has been in pretty good spirits. Lots of music today, and watching pbs, and receiving gifts from her fan club. :) Her behavior and general demeanor (when awake) have reminded me of just how quickly she's growing up. wow. The only other things of note today have been more training (the checklist is nearly filled, but the preferred teaching pace seems to be extra slow) and I've gotten to put some new skills into use working with Evelyn's trach. I'll repeat, for the millionth time, that this stuff is reassuringly straightforward.

I've gotten some questions about visitors - and yes, please feel free to visit! If you're not a frequent hospital visitor, here are some important points to take note of:
  • visiting hours are 8am to 8:30pm, but most sleepover parents aren't decent until closer to 9am (even though we've been awake since at least 6am)
  • there is always something happening, about to happen, or something has just happened - so expect people to walk in and out of the room - no big deal
  • because of all the hustle and bustle, it is best to limit visits to under an hour
  • call before you come, in case there has been a room change, or a change in the patient's health that might warrant rescheduling the visit
  • the visit itself is the important part; please don't feel any need to bring 'stuff'.
  • for Evelyn specifically, please know that we can't predict when she'll be awake, but if you don't get to see her eyes during your visit, you're welcome to come back - but even if you can't, we will be sure to tell her you came

If you don't have my cell phone number, and want to come visit, just post a comment here on the blog, or email me at Since this blog is public, I'd rather not post my phone number here.

See you soon!


Wednesday, March 14, 2012

Feeling Crabby?

Evelyn continued to do lots of sleeping today, but in the afternoon and early evening she actually woke up! In the picture here, she had *just* kind of a little bit opened her eyes and begun to consider what being really awake might feel like... so as a result she looks a bit, well, crabby. :)

Later in the evening, however, she was wide awake and answering questions and chose a movie to watch, enjoyed a good bath, and chose braids as her hairstyle (at her nurse's urging). When given some choices, Evelyn did not feel 'good' or 'bad', but she did feel 'funny' and 'weird'. She also said that her neck does not 'hurt'. So that's good. She has been awake probably five or six times since mid afternoon, usually for about twenty minutes at a time. She did manage to stay awake for about half of The Princess and the Frog, but she really likes Princess Tiana, so... :)

Evelyn is really a trooper - even though it obviously isn't fun to have surgery, be in the hospital, be all doped up for days, learn how to breathe through a new little hole in your neck, etc - she wasn't fussy when she woke up, she didn't seem scared, she just seemed a little grumpy. I personally would probably be a LOT more than grumpy. I continue to be so thankful that she is able to communicate; seeing her understand as much as she's able to the reasoning behind this surgery and hospital stay, and being able to exert small bits of control like choosing a movie - I know that those things make this experience much more bearable for her. There was a time when Daniel and I felt very skeptical about Evelyn's level of 'cognition' - a long time actually. I know that some reading this haven't really experienced Evelyn's talking firsthand, or have seen her on a bad day, or a sleepy day, and may doubt her ability. Well, all I can tell you is that there is no skepticism in our heads or hearts anymore. In large part, that is because we've seen her respond too well too many times to doubt her. The other factor is that far too many independent professionals have worked with her and seen the same things.

Now, don't get me wrong - I'm not saying Evelyn is a rocket scientist, and I don't have unrealistic or even specific long-term goals for her intellectually - I just know that right now, she is a very typical almost-five-year-old in her mind and in her heart. She knows her shapes, colors, letters and other preschool stuff; she knows how she's feeling and what she wants, she knows who all the people in her life are and how she feels about them, and she understands why she's in the hospital and what she needs to work on to go home.

I'm not sure why this post went in this direction, but I suspect it is because it is hard for people to believe without seeing. It seems easy for many to have faith in God, or in themselves - so why is it sometimes hard to have faith in a child? When someone we love seems not to 'get' Evelyn it hurts; and often it is just a matter of time and circumstance. Evelyn isn't 'in action' all day long every day - she's too medically complicated for that - but she's in there.

The idea of a lack of faith is applicable in so many situations where special needs are concerned. There is a big difference between being in denial and being realistically hopeful - and I believe that the moment I say something is impossible, it becomes unattainable for my child. I was talking to our nurse tonight, because she was asking about Evelyn - and I said that though I would be extremely (and pleasantly) surprised to see Evelyn walk someday, that I would absolutely not say that she never will. It would be a surprising accomplishment for her, given the many physical issues she faces - but if I believe that it will NEVER happen then it won't. We don't live our lives daydreaming about miracles, or imagining Evelyn to be someone she's not - we live very much in reality - watching her have seizures, struggle to breathe, spend way too much time in the hospital. We face the reality of a shortened lifespan, of continued trials and problems, both medical and otherwise, and we face the reality of looks, comments and a gross lack of understanding from the general public. The reality is that Evelyn is super-complicated, and that includes her brain, which is all mixed up structurally, but works just fine for thinking, thankyouverymuch.

I love you guys, and I know that parts of this post seem a little, well, crabby. This blog is intended to keep people informed about how Evelyn is doing day to day - when things are busy and when they're not - but it is also therapeutic for me, and a way to 'say to the world' what I wish Evelyn could say for herself. So, that being said, please don't take the crabbiness personally, because it probably isn't directed at you. :)

Tuesday, March 13, 2012

the waiting is the hardest part

We are SO ready to see Evelyn awake, and short of a few brief blinking episodes, it hasn't happened yet. This is okay, medically, but a little frustrating for all of us since we haven't seen her awake and really happy for at least a week, if not two or three.

Today was busy for Daniel and I, and quiet for Evelyn. Daniel zipped from the hospital to work, and at work from meeting to meeting, then back to the hospital. I woke up with Owen and helped him start his day, spent an hour in rain-delay traffic, gave Evelyn a sponge bath, had a nice visit with a friend, did some trach training (today was cpr with a trach!) had lunch with another friend who works at the hospital, then finally got some Evelyn cuddling in, in between feeding her and learning how the ventilator works and practicing some suctioning. After that I headed home to Pop and CCs house, where my absolutely wonderful mother-in-law fed Owen and me dinner. Then Owen and I took a walk, skyped Daniel and Evs, and he's just gone to bed. Tomorrow I will take Owen to school, then head to the hospital to stay for the day and night.

To be completely honest, this is already getting old, so I have great sympathy for those who've done marathon hospital stays routinely, or even semi-frequently. It is no fun. It is also interesting how much our mood depends upon the moods of our children. For better or worse when they're happy so are we, and when they're not - we're not either.

Today Evelyn was completely weaned off of the sedatives, but given she'd been on them for a few days, and given she's needed a little extra help due to seizure activity, she was still asleep all day today. On the upside, she is beginning to wean off of the ventilator, and the respiratory therapist described her progress as 'excellent' and 'beautiful'. As of 5pm when I left the hospital, the vent was giving her 10 breaths per minute and she was taking an additional 10 on her own. Since the ventilator measures such things, we also know that the breaths she is taking on her own are good strong ones, so that is great news.

I REALLY hope she is awake some tomorrow. Even if she's really grouchy, even if she keeps us hopping all day and night - I'm ready to interact with my daughter, and I'm sure she's ready to move beyond the twilight stage.

A healthy dose of perspective is always readily available at the hospital, and though I've resisted it today (being generally grouchy and self/evelyn-pitying) the truth is that you just can't walk through the hallways without feeling grateful. Grateful for your child's life, grateful for food to eat and a home, grateful for loving and supportive family and friends. Our daughter is surrounded by homemade blankets and special stuffed animals, wears fancy hospital gowns and bows in her hair, and I provide homemade organic food for her - even though she can't taste it - because I feel like its best for her and we can do that. When she needs or wants something, we do it; particularly if it is important for her development. There are families in the hospital who have to share one child's meal tray because there is no money for food. Children who treasure a donated blanket as if it is the most special thing they've ever been given - because it is. Children who are in the hospital because someone in their life, who should have been taking good care of them, hurt them instead. There are parents told every day that their child is going to heaven instead of coming home with them.

In light of these realities, I've typed myself into a much better mood - I'll take another sleepy day, because its another day with Evelyn, and its a step toward a better life for her.

As always, thanks for reading the lengthy ramblings, and for your continued prayers. Also, if you ever have extra money you don't have a place for (wouldn't that be nice! :) ) consider donating to Children's Healthcare of Atlanta at Scottish Rite . It is a very special place, doing amazing things for our daughter and so many others.


Monday, March 12, 2012

Yet another quiet day - for the most part.

Today was probably Evelyn's most restful day thus far. She didn't have many seizures, and just generally rested really peacefully. The only break from that quiet was the 'first trach change' - which went very well. The surgeon felt that the surgical site (aka stoma, aka hole in Evelyn's windpipe) looked just as it should, and the whole process of changing trachs took less than one minute total. After the trach change was over, Evelyn settled right down and went back to sleep. At that point we were officially able to start weaning the sedation, and we were put on the transfer list to move to the TICU. (a cozier section of the hospital)

Honestly, the more I learn the more similarities I see between a trach and a g-tube (feeding tube). Neither device is terribly complicated, and while both provide very valuable and in fact life saving services to my daughter - I think I could probably teach a second grader to properly care for both. Not that I would do that - but suffice it to say that we feel optimistic that we will pass our training.

I think because the trach is revealing itself to be such a simple device, it makes me a little sad that I viewed (and people with them) with such trepidation. It was never a hard decision to do for Evelyn what she needed; including getting a trach - but it was hard to imagine her having one, and the stares and lack of understanding that that would add on top of her wheelchair, feeding tube and obvious physical limitations.

I'm so glad that we've been blogging through all of this, because I don't want anyone that is a part of our life to feel like they're 'in the dark' about who Evelyn really is. I also don't want anyone to feel like they can't talk to us about this stuff, or that they can't ask questions. I thought trachs were scary, because I didn't understand how they worked or how to manage/care for them. They aren't scary to me anymore - though I respect the fact that your airway is a pretty critical area, and plan to ask as many questions and be as hands on as possible in the hospital so that I feel comfortable once we go home - I don't feel intimidated by trachs anymore. I hope that this blog will help eliminate some of the intimidation that some people feel when facing children or adults like Evelyn.

Tomorrow we will probably see a slightly dopey, slightly grumpy, slightly sleepy Evelyn. If she's occasionally also sneezy, bashful and happy then we will have covered most of the seven dwarves... :)

Sunday, March 11, 2012

Another Quiet Day

Well, today was another quiet day for Evelyn, and for us. Daniel spent last night at the hospital, and I stayed at Pop and CC's house (Jerry and Claudia). After a really good night's sleep, Owen and I spent the morning and early afternoon playing, reading books, and wandering around outside. I think he was still worn out from his hike up Stone Mountain yesterday with Daniel - but we did lots of 'mommy-Owen' stuff, which was nice.

Evelyn is still very sedated, and as a result, very sedate. :) (that's geek humor.) She has been resting well all day, with the exception of a few breakthrough seizures here and there. Her heart rate and temperature have both fluctuated throughout the day - but remained within the normal range - so no one but Daniel and I have really even noticed. I think she's going to be ready to be awake soon and is planning some payback.

The plan for now is that the surgeon will come tomorrow (Monday) afternoon and do Evelyn's first Trach change. A trach, given that it goes into your airway, needs to stay nice and clean, so they are replaced about once a week. The little hole into the airway will actually heal such that it is a sealed 'tunnel' into the airway, and every week (at home) we will take her old trach out and put a new one in. After the surgeon does this first trach change tomorrow, it will be 'official' that the site has healed enough for Evelyn to move around and start really using her trach. So, tomorrow night/Tuesday morning they will start weaning the sedatives.... So, tomorrow night/Tuesday morning we will have a very ticked off little princess. :)

Don't worry, they will continue with pain medication, and we have all manner of fluffy pink and purple fun stuff to help her weather the storm - but it is tough waking up and having a sore neck and being in the hospital, and I expect the next few days to be the toughest. Of course, we are on hospital time, so the surgeon might show up as planned tomorrow afternoon, or he might stroll in at 5am tomorrow. You never know. :)

I will have another update tomorrow - and am planning new Evelyn pics once she's awake.

By the way - if anyone has any questions please feel free to ask - nothing is off limits, as long as it's tasteful. :)

Saturday, March 10, 2012

Quiet day

Daniel here, taking over the blog for the day for Kim (who's now at my folks' house, hopefully catching-up on some sleep).

Today was a quiet day, as-anticipated.  I spent the night at my parents house, to spend some time with Owen, and Kim stayed at the hospital with Evs.  The night for Kim was not a great one, as there was a lot of "in-and-out" of the nurses overnight.  They described Evs aptly, I think, as "stable, but not quite balanced" - primarily, this is just due to trying to balance her blood-pressure and seizures.  Which one wouldn't THINK are directly interrelated, but here's how.  ;-)

In short, her blood-pressure has been a little low since surgery.  Perhaps not unremarkable for most, between coming out of surgery, as well as being on anesthetics/sedatives.  Most new trach patients are on paralytics - e.g. medically paralyzed - in addition to being sedated, for the first few days following surgery, just to help assure to keep them still for the site to heal.  For a number of factors, all of which I am not 100% certain - I believe relating to the fact that Evs is not the most mobile patient in the world anyway, and that perhaps adding the paralytics can increase low blood-pressure or muscle-tone issues, etc - the docs decided to forgo the paralytic.

However, Evelyn of course does have 1 movement down pat:  Her seizures.  So as the sedation was reduced slightly to try & help keep her blood-pressure from being so low - along with saline & dopamine, which were added to help up her blood-pressure, but also keep things "flushing out" (e.g. sedatives and her regular seizure meds) - she started having more seizures.  You know your seizures are pernicious if they persist through all manner of sedatives - it might make a good future anecdote when we get an suspicious eye-brow raise when we tell some new medical staff "her seizures are not controlled" - "No, really - she can be sedated by IV and have Versed drips, and still have seizures."

Anyway, they are largely milder than usual in intensity, and ordinarily ones that would be of no concern; however, the word of the day for today & the next two is "still".  So, they've been adding in Versed and Ativan PRN for seizures (but of course, too much Versed will lower your blood pressure...).  Up/down/back/forth - just a lot of little "toggling" of the various medicine "switches".  None of which, again, is terribly serious - just "balancing things", to use the example of our nurse.  On the positive side, they noted that Evs has been breating around/above the vent some, which is a good sign - e.g. while she's still getting lots of support from the vent right now, she is taking breaths over & above what the vent is supplying, which is "good".

So, that's the long of it.  A lot of sitting, some reading, a few good visits, but all-in-all, a quiet (though not necessarily restful) day.  Evelyn is "doing fine", all-considered.

Meanwhile, "back in the world", I took Owen for a hike up Stone Mountain, to try & enjoy the beautiful day some.  Not his first time there, but it was his first time up the rock, and I am very proud to say that he hiked it up AND down on his own two legs.  It did take a little prodding near the top, but he was a very big boy.  I think he also may have inadvertently shamed a few huffing-and-puffing ladies ("Well if that two-year-old can make it..."), but they still said he has beautiful eyes.  ;-)

Friday, March 9, 2012

God is Good All the Time.

Well, the surgery was 'textbook'. Evelyn did well throughout, and is now back in her room in the PICU resting; and she will be resting through Monday afternoon. The surgeon confirmed that her upper airway is very floppy, which is what was causing the obstructed breathing pattern. That is yet another reassurance that this was the right thing to do for Evelyn, and the right timing as well.

I am so thankful that the surgery went well, and though there are tough days ahead we are feeling blessed and relieved right now. Knowing so many people are praying for our family has given us so much strength we otherwise wouldn't have - so thank you.

I will be with Evelyn tonight at the hospital, and Daniel has headed to his parent's house to be with them and Owen. We are all going to focus on rest this weekend - as the real work begins Monday evening following the first trach change. At that point they will stop the sedation and we will all start really working on recovery and training.

If you want to make a quick visit this weekend we are open to that, but want to keep the room relatively quiet for Evs. I think Monday and Tuesday will likely be really busy days, but will keep updating daily. Evelyn looks good, and her breathing is very peaceful, which we haven't seen in a while. Once she's awake and properly fancy again I'll post pictures - though she does have a pretty flashy pink ponytail holder in right now. :)

Love to you all,

Quick Update

Well, after a quiet night, Evelyn has continued to rest all day - aided somewhat by a very mild sedative she was given during her PICC line placement this morning. A PICC line is, essentially, a more secure, longer lasting IV. Evelyn's little veins like to hide, and IVs like to fail rather quickly, and since policy is to maintain IV access throughout a hospital stay it makes sense to have a PICC line. Otherwise she would probably be getting poked every two or three days to replace her IVs.

For those of you who haven't seen through facebook, her surgery is firmly set for 3:30pm, which means she will leave the hospital room for the OR around 3pm. We can go back most of the way with her, and we expect she will probably be asleep through the whole process.

We feel good about our decision for her, and I feel so much more at peace now that we are in the hospital and heading toward the surgery.

Please continue to pray that God's will be done today for Evelyn and for us; our hope is that she has a successful operation with no complications. I will post again if the time of surgery changes; otherwise I will post after she returns from surgery - we will probably get to see her sometime between 6 and 7pm; though the surgery only takes about an hour, there is prep, recovery, moving back to her room in the PICU, getting settled there, and THEN they let us see her again.


Thursday, March 8, 2012

the Princess of the PICU

Well, we're here and settled in. Evelyn has watched a Tinkerbell movie and is just starting Beauty and the Beast, she's had quite a few visitors (doctors, nurses and the like) and is looking cozy in her fancy hospital gown and blankets. We still don't have a time for the surgery tomorrow, but we should know sometime this afternoon - and I will put up a post immediately after she goes back for the operation.

One of our medical visitors today was Lauren, a Child Life Specialist here at CHOA. She came by to talk with Evelyn about the surgery tomorrow; explaining each step of the process (from Evelyn's perspective) and showing her pictures of where she will go and what will happen. Then, it was time for Minnie Mouse to get a Trach. The surgery was successful, I'm pleased to say, and Minnie is breathing SO much better! :) She already has a g-tube and a pulse-oximeter, so this will just complete things. It was actually nice to see/touch/examine a trach in advance. I've known children and adults who have them, but have never touched one before. It is made of a soft but sturdy plastic, and there are fleece-like 'ties' that fasten around the neck to keep it securely in place. There is also an internal 'cuff' that keeps it from wiggling or falling out, but the ties are an extra security. We fully intend to have ties that coordinate with Evelyn's outfits. :)

Daniel and I will both be here until early evening and then I'll head to CC and Pop's house to spend some time with Owen. Tomorrow Daniel and I will both be here all day for the surgery and post-op, etc. Daniel will probably sleep at his parents house with Owen tomorrow night, so we can each sleep in a real bed occasionally. Evelyn looks a little rough with the bi-pap mask on, but she really is doing very well, and enjoyed the visit from Child Life. She is old enough now to really understand that this surgery will help her, and while she may not have a full understanding of everything recovery will entail, she knows that we always tell her what is coming next, and trusts us to take care of things.

Please continue to pray for Evelyn and our family (I know you will!) as well as the doctors, and especially the surgeon and anesthetist. Everything is in God's hands - and for that reason we can rest easy.

Wednesday, March 7, 2012

Good day!

Today was a good day. Evelyn woke up smiling, and though her fatigue and overall situation haven't changed, when she's happy its pretty much impossible to not feel more optimistic. We went down to Scottish Rite late this afternoon to see the ENT (kind of like a pre-op, though technically just an office visit). As it happens, there is an opening this Friday - so Evs will be admitted to the hospital tomorrow, likely early afternoon, for surgery Friday. Our surgeon did seem a little more optimistic about the length of the hospital stay, so we're hoping we really can keep it under 14 days.

This even earlier surgery resolves two things:

1. We've been nervous about Evelyn continuing to fatigue, and how her breathing might be affected if she needs her seizure rescue meds. Not so worried knowing we'll be in the hospital in less than 24 hours.

2. Get it over with already! Knowing that Evelyn needs a trach, and feeling good about that decision, we are collectively ready to move through the waiting, surgery and early recovery, and get on with Evs feeling better and us feeling comfortable with her new accessory. :)

All of this is a big deal, even for we seasoned parents of a medically fragile child, but life really is good. There is a plan in place, the timing feels right (and safe) to us, and we can easily tell both of our children that they will, throughout these next few weeks, ALWAYS be with people who love them very much and whom they know very well. That requires a huge thank-you in advance to our extended family and close friends here in town - you guys are awesome. I am also, believe it or not, so very grateful that this is not our first hospital stay. We know so many little things that will make this easier for Evelyn and for us; from the library to the Child Life resources to the fact that the only drinkable coffee is at the coffee shop. :) With a longer stay lined up, just knowing how it all works will make things so very much easier.

With respect to visitors, I think mid-week next week will be a good starting point for visitors. Evelyn will be sedated for 3-4 days post surgery so that the site can heal without interference (from wiggly little girls, etc) so she won't know you came by until she is more awake, probably around Tuesday-ish. I will keep writing a daily update, and on Friday I will post when she goes back for surgery, and as soon as we know she's finished and doing well.

I am hoping to find someone to spend a good chunk of time with Evelyn one day next week, and one day the week after so that while Daniel is at work I can spend some time with Owen during the day. If you know Evelyn well (used to talking with her and reading books, movies and such) and are free during a weekday from roughly 8-12 or 1-5ish please let me know. 'CC' (Daniel's mom) and Owen have a wonderful repor, so he is really going to enjoy being with her, but I know that he senses that things are different, so Daniel and I want to be sure to give him some quality time (in addition to dinner/bedtime - one of us will be with him for that every night).


Tuesday, March 6, 2012

Surgery is Scheduled

Today has been a pretty up and down - for us and for Evelyn. She woke up this morning with a big smile and looking better than I've seen her in a few days. She wanted to get in her wheelchair, roll around the house and read some stories. So she did. :) After about twenty minutes, the telltale yucky breathing pattern returned, and though she hung in there for a while, ultimately it was time for the next breathing treatment. Following her treatment she chose to go back on her bi-pap, which is a pretty clear indicator of how tired she is. She was largely on the bi-pap for the rest of the day. She continues to be tired but stable, and of course, very adorable.

I think I was on the phone literally all day long, and have yet to finish all the phone calls I need to make, but it was all productive. Most importantly was the discussion with Evelyn's pulmonologist, who was in full agreement with my assessment and feeling of urgency regarding the need for a trach placement ASAP. He spoke with the ENT (who will actually do the surgery) and they both feel that other than a bronchoscopy (sp) during the surgery they will not do any of the typical preliminary tests done prior to getting a trach. This is simply because Evelyn's issues are 'classic' and it really is a no-brainer that this is the right decision.

Our surgery is scheduled for Tuesday, March 13th and 12:30pm EST at Children's Healthcare of Atlanta at Scottish Rite. Evelyn will be admitted to the PICU on Monday, March 12th and will return to PICU post-surgery. After a few days she will move to the TICU which is a good bit cozier, but has the same level of care as the other ICUs. At a minimum, we can expect a two week stay, primarily due to training and equipment adjustments. They think 4 weeks would be a maximum length of stay, so I'm estimating 3 weeks and hoping we go home in just under 2.

Tomorrow (Wednesday) we have an appointment with the ENT to do all the pre-surgery stuff and give him an opportunity to really observe/examine Evelyn while she's not anesthetized. To be honest, I think there is a decent chance that after seeing her tomorrow he's going to want her admitted right away. While she is stable, she doesn't look great to me, and I'm not opposed to going in tomorrow (though I really hope if we're admitted early, the surgery will be done this week ).

It has been over two years since Evelyn has had a major health change, a lengthy hospital stay, or has been this 'sick'. It has also all happened really quickly, over the last three weeks. For these reasons, it has definitely been a stressful time for us - but we're doing well, and we continue to appreciate everything we have to be thankful for. Including all of you.

We've been inundated with offers of prayers, kind words, meals, etc - and thank you! I am just not going to be able to respond to everyone individually right now, but please know that we appreciate your support, especially your prayers. We know that even in the midst of all of this, we are so lucky - we have love, family, faith, a secure home, and so much support. If you want to visit, or need to connect with us in person please call or send me a text message. I will try to respond to emails, but some are going to get lost in the shuffle.

Thanks again!

PS: Owen is in his crib (should've been asleep 30 mins ago) clapping. Earlier today he announced he was going to tickle Pooh - and he proceeded to tickle his stuffed animal relentlessly. such a mess. :)

Monday, March 5, 2012

and a little about our family

So, many of you are not that familiar with Daniel and I personally, or we've only met recently. I just wanted to say, first and foremost, thank you for loving our family (or our daughter in particular) enough to even read all these ramblings. There is strength in numbers, and your thoughts, prayers and interest are so helpful to us and to Evelyn.

Also, we love our kids. Evelyn and Owen are so important to Daniel and I, and though Evelyn's life looks very different than Owen's, we treasure them both equally. We will always make decisions for Evelyn (particularly medical ones) with the question of 'quality of life' just as high as 'fixing a problem' or 'treating a symptom'. Evelyn has a great spirit, and a true intelligence, and we feel it is important to honor her as a person when we make difficult decisions for her.

Also, we are an open book. We are SO not perfect. We try hard, but sometimes we don't - there are definitely dust bunnies in the corners of my house, and always at least one load of laundry that needs folding. But we, as a family, love each other very much - and we care about and respect each of you enough to want you to ASK any question you might have, without fear of saying the wrong thing or stumbling over a delicate topic. The world of special needs is foreign to some people - it was to us before Evelyn was born - but we really believe that if you have an interest in our family or our daughter, we want to help you feel comfortable around her and us. So please, ask away, come visit, etc - and if something about Evelyn's situation is hard for you, we understand that too.

Also, that's enough blogging for one night. :) If you made through all this, there must not be much on tv tonight. :)

Weary but Working

So that's Rocky, our old, indulgent pound puppy. He's got a little bit of doggy dementia, and his joints are getting creaky, so I guess he's earned a little chair-sitting.

That's how Evelyn and I are feeling today. Tired. Evelyn uses a bi-pap machine at night (google it if needed) to give her nice deep breaths and a restful sleep. Well, she was so lethargic today that we and her pulmonologist felt it'd be best to keep her on it for the majority of the day. So we did. And she appreciated that; though her numbers (meaning oxygen saturation and heart rate) have been consistently good, she just looks worn out. She looks like she's working harder to breathe when she's not on her bi-pap, and I just don't have a great feeling about her sustaining this level of lethargy for much longer. So, first thing this morning I called pulmonology and the ENT to push for an earlier follow up and to get the ball rolling with the trach discussion. Pulmo was very helpful, but unfortunately nothing much happened all afternoon. As I realized we weren't getting the much desired call to schedule an ENT appointment (and they're the ones that lead the way where trachs are concerned) I called them, again, and left a message, again. No response. So, as soon as we got past business hours, I decided to be sneaky and call the on-call pulmonologist to get advice on what more, if anything, we could do for Evelyn. My hope was that whoever was on call would be nice and I'd get the whole story out, and get some action on our behalf.

Well, the doc was awesome. Confirmed that I'm not overreacting with regard to my concern for Evelyn's current health - basically she doesn't have much reserve left, so we DO need to act fast. He said he'd talk with our pulmo first thing in the morning - but 30 minutes later he called back and had already spoken with him. SO, our pulmo will be speaking personally to our ENT (who to this point probably doesn't have a clue about everything that's happening) in the morning, and we will likely have a direct admit to the hospital to place a trach. I expect we'll go in to the hospital this week, possibly as early as tomorrow.

Don't get me wrong, I'm not excited about this. The surgery is, well, surgery, and the recovery stay is a minimum of a week. It is going to be tough - Owen will be with his CC (grandma) who he adores, Daniel will be working days and at the hospital most nights, and I'll split between the hospital with Evs during the day and Owen at night. I'm glad things like this don't happen too often, because it isn't fun. The truth is though, that I'd go through it all twice, and Evelyn would too, if it meant she'd get some relief and energy. And she will, as long as things go smoothly.

I've been a little disappointed these last few days by the lack of perspective or compassion shown by a few people we know, but that's inevitable. We feel so much love, and know so many prayers are being said; and that makes all the difference. It can be lonely and isolating in the hospital, where time stops - yet the world keeps moving - but I am so thankful for all of you - even when it's just a 'like' on facebook - because it means Evelyn was thought of, once again, with love - often by someone she's never met. Some people criticize the digital age because they fear it limits face-to-face contact, and I don't disagree. But when face-to-face isn't practical, or even feasible, it gives us another community of people to walk through life with. Thanks for walking with us.

Sunday, March 4, 2012

Ten Thousand Reasons

I would consider today to be our first 'observation day' with respect to Evelyn's breathing issues - in preparation for our follow up with pulmonology in a couple weeks. The last couple Sundays we've been in church have been particularly rough for Evelyn - or maybe just more obvious for Daniel and I, sitting with her in the relative quiet of church, noticing how much she's struggling. While we could see that today her breathing was less noisy, we could also see that it was just as labored as it was a week ago.

It just isn't easy to watch your child struggle, in big ways or small ones, and so I find myself slipping in and out of good and bad moods. For that reason, the sermon today and some of the music was particularly poignant. I don't generally write or talk a ton about my faith or the bible, I guess it just isn't my nature to be overly vocal about it, but I feel like there are so many parallels that they bear mentioning. So often we feel imprisoned - by our desires, by our work, by the demands others make of us - or in Evelyn's case, I imagine she feels somewhat imprisoned by her body and its limitations. We've been studying Philippians and though Paul is literally IN prison, he says that he is free. The interesting point today was that though he wasn't free FROM his jail, he was free FOR others.

If there is one thing Evelyn has shown me over the last (nearly) five years, it is grace. Though she may be weighed down and even imprisoned by her many limitations, she is free for grace - and has been a path to grace for so many. There was a hymn sung today that discusses the 'Ten Thousand Reasons' (and more) that we have to praise the Lord. Well, as we were watching Evelyn closely, and the realization that her breathing really hasn't improved was sinking in, hearing those words was so meaningful. Every single day, no matter what comes, we have countless reasons to be thankful, grateful and joyous.

That doesn't mean we handle all this craziness perfectly; it just means that sometimes the right words (or sermon) come at the right time. We all face struggles in our lives. I can honestly say that there is no one I know who hasn't faced or is facing challenges in their lives. Because a lot of our challenges center around Aicardi Syndrome they may look different than the struggles you face - but we all have a choice about how to handle them. We can become worn down and embittered by the 'cruel hand life has dealt' or we can look for the ten thousand reasons we have to be grateful. Sometimes we have to make that choice over and over again, moment by moment - but it is definitely a choice worth making.

Saturday, March 3, 2012

Hello again!

Well, it has been nearly two years since our last blog post, but for many reasons it seems high-time to begin posting again on a regular basis.

For starters, Evelyn's little brother Owen is now 2 1/2, and very good at it. :) Evelyn will be FIVE in a couple months - which is just crazy - and Daniel and I will be another year older soon as well. In most respects, Evelyn has had a great couple of years. She has been in school, wowing her teachers and therapists with her knowledge (and fashion sense!) and continues to be the such a sweet, happy little girl. Since the winter of 2010 we've managed to avoid any hospital-worthy respiratory issues, though her seizures have caused some trouble from time to time.

Which brings us to now, March 2012. Over the last few months we've noticed on occasion that Evelyn will slip into a very labored breathing pattern - lots of noisy snorting, chest heaving, etc. She then resolves the issue on her own and carries on with her day. Typically these episodes don't impact her oxygen saturation, but since they don't look or sound like much fun, we've been watchful of them. About three weeks ago Evelyn got a cold. It was just your average, run of the mill cold, and overall she handled herself well (no scary moments with oxygen dropping, no fevers, etc) but the cold just wouldn't go away. We started her on an antibiotic just in case, and as we were finishing it we came to realize that though the cold symptoms were gone, she was really struggling with her breathing. Anytime she got 'up' to do anything more than lounge and watch movies she would slip into the obstructive breathing pattern - and wasn't able to really recover from it without a breathing treatment or time on the bi-pap.

Well, that's no good. So, we took some video and went to see her pulmonologist. Though I had a litany of potential causes to discuss, as expected it comes down to muscle tone. Evelyn's muscle tone is very low (weak) in general, and that affects the muscles in her mouth, throat and airway as well. This means that the breathing difficulty is occuring because her tongue is ever so slightly slipping back and blocking her airway. Because of her weakness she has trouble pulling her tongue back 'up', which leads to saliva pooling in her mouth. When she finally recovers from the obstruction she then has to deal with swallowing an overload of saliva. Basically this issue is only resolved by placing a trach. We thought in general that Evs might need one someday, but now it seems fairly clear that that day will be sooner than later.

We will have a follow up appointment in two weeks to discuss how she's doing and what the plan will be going forward. We need to spend the next two weeks evaluating her breathing - how frequently is she obstructing? for how long? does it affect her o2 or heart rate? how is it resolved - position change, self correct, etc? The answers to these questions will give us a good idea of when the surgery will need to occur. My expectation is that it will be needed in the next couple of months, as I'm just not seeing her improve after this illness the way I'd expect.

In general we are so thankful that a trach is an option for Evelyn, and we're glad we've caught these issues before they became worse. Of course surgery is scary, and we worry for Evelyn - both for her health and that she will feel 'okay' about going through all of this. We want her to have a happy life, and to be as healthy as she can be. It does make us sad, because the need for a trach is yet another reminder of how medically fragile Evelyn is, and of how fleeting life is for us all. Having a trach is highly likely to greatly improve her quality of life, and will likely extend her life significantly as well - so that's why we feel its the right choice.

We hope the few people that still read this - or that start reading it - we be praying for our family and sending good thoughts our way.