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.

:)

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!

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.

http://www.cviga.org/

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.

:)

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.

:)
Kim

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 kimberly.forester@gmail.com Since this blog is public, I'd rather not post my phone number here.

See you soon!

Kim