Tuesday, September 27, 2011

Heart Thoughts-Our Life Now

So I'm sitting here tonight recording my baby as she sleeps to try to capture possible seizure activity. Her EEG from last week didn't show seizures, but I am still worried. Because this is our life now.

I ran a 5K the other weekend. Woohoo, my first one! Before we left for the race, I had to pack up the kids and get them to each of their destinations. For Waverly that meant also packing up her monitor, feeding pump, tubing, etc. I wondered if I was the only one there who had to clean a g-tube before I left for the race. Because this is our life now.

I want to take my baby everywhere and have people look at her and wonder why she's got a bag hanging with milk in it and tell them all about her. I want people to ask to hold her, and to let them, because she is so special. I am so proud of her. And of us. Because of our life now.

I want to hide away in my house because I am terrified of any sneezing or coughing or germs that we may come in contact with. I want us all to walk around in a sanitation bubble so that we don't spread germs to our baby. Because I am terrified of what may happen if she gets sick. Because this is our life now.

I want to sleep without having my ears always on, without waiting for a cry or cough or jerky movement. Because even though she sleeps pretty well most nights, I can't. And even though I am sleeping a decent number of hours at night, I am still tired most days. Because this is our life now.

I want to thank every person I know (and there are more that I don't know that deserve thanks too), because we have been so blessed by the love and care of so many. I am scared that they just don't realize how very thankful we are for them. I don't know how we would have survived these past several months without them. Because this is our life now.

I feel like I am constantly on the go. But then I feel guilty when I'm not, because there is always something to be done. An appointment to go to, medicines to pick up, big kids to take places, grocery shopping to do, house to clean, meals to prepare, laundry to do. Even though it's not much different than most people's lives with several kids, it is tiring. Because this is our (and many other people's) life now.

Just some thoughts from tonight. Not complaining, just a glimpse into my thoughts. We are so blessed. Because this is our life now.

Monday, September 19, 2011

Physical Therapy

Here are some pictures of Waverly working hard during physical therapy.

Whew, it makes a girl tired! Way to work hard little one!

Thursday, September 8, 2011

4 Months Old!

Today is Waverly's four month birthday! Happy month-day little girl!

This picture is from this morning during her tummy time. She's demonstrating one of her newest skills...sucking on her fist! She brings her hand to her mouth often now, even when she's on her back, and sucks on her hand. We've been working on this in Physical Therapy for some time now, so we are so excited that she's figured it out! Dressed up for church a couple of weeks ago.
She also got a very pretty UVA dress that she is proud to wear!
She's been spending time in the Ergo some, and seems to like it really well! She likes to sleep in it when she's all snuggled against me, and I kinda like it too... :) Big sister is showing what a good mama she is to her babies also!
Waverly got to her first UVA game last weekend! She did really well for such a long day. She wasn't a big fan of the loud noises, but ended up doing really well (even though it was reallly hot!).
Of course, she reps JMU as well! Go Dukes!
Finally, here are some more pics from this morning. Big brother of course had to get in on the action!

Silly face.
Our biggest news for her 4 months is actually from today. She had a swallow study, and did SUPER! She didn't aspirate at all, and now we can start feeding her bottles some! We will have to take it very slowly, so we are going to give her bottles twice a day, and only do about 1/2 ounce, but it's exciting all the same! She chowed down on that bottle, and got so mad when they took it away from her!

Our other really big news is that she now has a MIC-KEY button! We LOVE the button (SO much better than the PEG tube hanging out of her), and she did really well with that surgery. Also, as a result of the button, she is now allowed to take tub baths, which is so nice! She seems to enjoy them and I am so happy to be able to bathe her!

Other news from this past month is that she is no longer swaddled for bedtime. She seemed to be waking up during the night and being agitated about being confined, so I just decided to stop and see what happened. She sleeps on her side with her hands crossed in front of her face (SO cute!). She still has a not-so-sound sleeping time sometime during the wee hours of the morning (3-4a.m.), so at that time I transfer her to her carseat to finish the night sleeping. She seems to like that pretty well and settles back down to sleep well there. During the day she really isn't on any sort of a schedule. She naps when she naps, and she's awake when she's awake. Some days she seems really sleepy, and others she hardly naps at all! We never know what kind of day it will be!

She hasn't been weighed in 3 weeks, so I'm really not sure what her weight is right now (the past few appointments she's had didn't have an infant scale). I will be sure to update her weight when we get a new one next week.

She still loves to "play" with the animals on her toy bar or on the handle that hangs over her carseat. She will smile and coo at them so sweetly. She also smiles at us some now, and will give us little coos and sweet noises. She still loves to be held by anybody who is willing! We are just treasuring these days with her, and count each one as a gift.

Tuesday, September 6, 2011

Heart Thoughts-Fear

So this isn't going to be a thought-full, tear-producing, deep post. More of an honest post about the future, and a request for prayer. Because Waverly's health has been so stable (praise God!), I am afraid we've kind of tricked ourselves into how life will be. But I am scared that that all will change with the fall/winter and the "sick months". Last year we battled sickness for months and months. It seemed like it was one thing after the next, including the flu working through all of us (including a very pregnant me!). With Waverly, I feel like the stakes are so much higher now. If she gets sick, it could be really bad for her, and will likely end up in hospitalization at some point. It's almost like I can't imagine what that life will look like, since we have things kind of down pat for now. I know I should just be enjoying the sweet, lower-stress time we are having right now, and I certainly am. But lately I have been struggling with fear over what's to come. Once seizures start. Once sickness comes. The first pneumonia. The first trip to the ER. Hopefully all these are a long way off, but from the experience of others, it is to come, sooner or later. Please join me in praying for God's peace and protection. That I would focus on the good and not dread the future or the trials. That we would trust in His sovereignty over Waverly, our family, the timing, etc.

I am an Alison Krauss fan, and I love the song that she sings, "I Know Who Holds Tomorrow." The first part of it goes like this, and it's a neat reminder to me...

I don't know about tomorrow;
I just live from day to day.
I don't borrow from its sunshine
For its skies may turn to grey.
I don't worry o'er the future,
For I know what Jesus said.
And today I'll walk beside Him,
For He knows what lies ahead.

Many things about tomorrow
I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.

A few lost pics

I found these pics on a camera that had lost its battery and didn't get recharged for a few weeks. They are from the hospital. Enjoy!

Our THREE kids!
Sweet little girl!

Doing her car seat study in the NICU the day before we came home!

Monday, September 5, 2011

Welcome to Holland

I have come across this several times in the past few months, and like it's perspective and message. I hope you enjoy it too.

"Welcome to Holland"
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this: When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.