Thanks-giving and Honesty

Yes, I know I have been pretty quiet here. The truth is, it is sometimes hard to know what to post. What do I write? What do I share? So much of it is the same old, same old. Do you get tired of hearing it all? Much of it is things that I am still trying to process myself. How can I write when I don't even know what to think? And part of the issue is that we haven't shared everything that has been going on lately, so I feel limited in what I can say.

But, here goes.

First of all, Waverly has had a relatively few good weeks. She spent much of this month off of oxygen for the majority of the daytime hours. This is huge, as she hasn't done that well in almost a year! But, she's still a sick little girl in so many ways. So, here's some info for you:

Waverly is on hospice.

We've hesitated in sharing this information for months now, because of the alarm it might cause or the questions it might create. Hospice care is different for children with chronic conditions, though. Generally, a "six months or less" timeline or diagnosis is not required to receive hospice care for children. Instead, if a child has a chronic but terminal condition, hospice can provide another level of support for the family  in caring with the child. Their services allow us to be able to care for her at home more often even in times of sickness, as they will send out nurses to come evaluate, communicate with doctors to get medications to deal with sickness, etc. Their goal is to help support us in caring for our child in a comfortable, home situation as much as possible. We are not opposed to taking her to the hospital for care when needed, though.

Along with that hospice care has come even more focus on her comfort. At their suggestion several months ago, we got morphine to give to her as needed. That was a hard thing for us to accept. In general, ,we don't like to medicate unnecessarily. Of course, with Waverly things are different and we recognize she needs a lot of medication to help deal with her symptoms. But morphine? I didn't want to feel like I was "drugging" my baby. But we don't give it regularly-only in times of respiratory distress when she is struggling to breathe and working so hard. Do you know what it's like to see your child literally panting, ribs showing and chest heaving, just to move air? It's heartbreaking to watch her struggle so. And after one of her sicknesses a few months ago, they told us it was time. Since then we've given it 3 times. Each time it's hard for me.

So. There it is. Our everyday lives. That are not so everyday. Talks about end of life care, comfort for our child, caring for our older two in the midst of uncertainty, fighting for our marriage to remain strong, begging God for more faith to face what no parent ever dreams of facing. How do I share that with you all in a quick little post with a cute picture or a post asking for prayer for yet another sickness that she's dealing with?

Yet, even with all of that, we have so so much to give thanks for.

Each holiday is a celebration for us. A celebration to be all together as a family. Yet each holiday brings with it some grief and sadness. I wonder if this will be the last Thanksgiving we have with her. Will she be here next Thanksgiving? How will we get through it if not? I hold her a little tighter. Cherish our times together. I  hold our older two a little tighter, and my husband as well. None of us is guaranteed the next day. And I think of all the families that I now know who do have to spend this holiday missing their loved one(s). My heart breaks for them, and every "Happy Thanksgiving" and "Happy Holiday" wish carries a sting that hurts deep inside.

And so we continue on, with these dueling emotions. Immense joy, tainted by pain. Cherishing the moment, fearing the future. Thankful for God's grace, and praying for His mercy.

Of course, I can't let this day come to a close without saying THANK YOU to each of you who read, who pray, for love our family so well in so many ways. Thank you, from the bottom of our hearts.

He Answers with a Box

For those of you who know our family well, it's obvious that we are UVA fans (although my husband and I proudly went to JMU-go Dukes!). Johnny has been going to UVA games since he was a young boy. In fact, his father has not missed a home game since the 1980s! We've attended games together as a newly dating couple, as an engaged couple, and as newlyweds. I've gone during first trimester queasiness up to being 9 months pregnant (with Jackson, who was born in September-thankfully not on a game day!). We have taken our children, the youngest starting at 5 weeks old. It's what we do as a family. 

Waverly's first fall, she was able to go to a few games. She was still so small and more easily portable, and relatively healthy. Her seizures started in September of that year, so they weren't as big of an issue her first couple games. The only thing we had to contend with was her feeding. She was so small we could just hold her during the game and hook her up to her feeding pump when it was time to eat. 

Last year, however, she was unable to make it to any games. It just didn't work out with weather and her health. We were disappointed but also want to be careful and cautious with her and her health. 

So far this year, she hasn't made it to any games either. We were hoping to try to take her. But every time it was a possibility it was either too hot, too cold, or raining. We also knew she couldn't come down to our normal seats as easily being much bigger this year and with more equipment/oxygen, etc. So we figured if we took her we could have one of us sit in the small handicap area at the top of our section. Not ideal, but we wanted to be able to include her in something that remains a big part of our family. 

However, as I mentioned, the circumstances just were not working out for us to take her. I figured she just wouldn't go again this year. Not a huge deal, but I was also sad not to have her as part of our family memory with the games for yet another year. Last weekend, though, my heart strings were pulled when Jackson, who's 5, asked if Waverly could come to the game that day. When I told him no, he was so disappointed. He really wanted his sister there. Since he was only 3 the last time she'd attended a game, it was likely he didn't remember it. Since Waverly had such a good week last week, I started thinking...

On Thursday evening I mentioned to Johnny the possibility of taking her. She'd had a great week being off of oxygen most of the week. The weather was looking beautiful. However, I'd been dreaming since last week about what it would be like if we could watch the game from box seats (in a suite). I knew that'd be best for Waverly, since it'd be more quiet, she'd have a place to go in from being outside if it got too warm/cool/sunny. We'd have a place to charge some of her equipment since it needs plugged up during the day to charge the battery for travel home. And, we'd get to be together as a family and watch the game together. The kids could cheer the team with their sister. 

Well, as you may have guessed, God provided that and more for our family. Johnny got a text from a friend Thursday night that something may be available. Yes I cried. Multiple times over it all. It's not about football. It's about family memories, especially that the older kids get to have with their sister. They were able to show her the band, move her hands to the cheers, sing the national anthem with her, tell her about the first downs, and just love having her there and actually sitting beside her at a football game. Enjoy some pictures from our day. 

Thank you so much to those who prayed that something would work out for us to be able to take her. Thank you to the generosity of those who made the amazing accommodations happen. And thank you God for another wonderful family memory! 

Crazy week

I am a little late in posting this. For some reason it can be difficult to update on time!  Two weeks ago Waverly got really sick with a respiratory bug on Sunday and Monday. She had a really high temperature and high respiration rate (over 70 breaths per minute!). We thankfully were able to get some meds started and antibiotics and she stabilized and we were able to keep her home. Within 24 hours, she was smiling while on the bipap. Silly girl!  

Then on Thursday afternoon, we noticed she had a blown pupil, in which her one pupil was dilated and non- reactive to light, while the other one was fine. Although she was acting fine, after much deliberation, we decided to take her in to get checked out and get a CT scan. I was honestly pretty scared because of the possibilities (doctors were saying things like brain bleed, brain herniation, and making preparations). 

Thankfully, her scans looked fine (for her...) and we think she may have gotten one of her nebulized medications in her eye, causing her pupil to dilate. They kept her overnight in the PICU to observe her and make sure though. 

Of course, when you hear things like the doctors were saying and wondering if "this was finally it", it was hard to process. I am thankful that we didn't get the bad news they were fearing and that we continue to get to enjoy time with our sweet girl. 

The Difference of a Day

On Sunday night Waverly started acting "off" for her. As I went to lay down for bed, I heard a different type of noise for her over the monitor. When I went in her room, she was breathing very fast (60-70 breaths per minute), grunting, heart rate was high, her skin was mottled, and her temperature was rising quickly. I gave her Motrin for her fever and tried to determine if she was seizing as well. I stopped her feed and took off her bipap in case she vomited (because she was acting like she might). And we rocked and prayed. Needless to say, I didn't sleep much that night. Her fever took a while to come down. The next morning, yesterday, she did ok for the first part of the day. But by the afternoon she started to go downhill again. We got her hospice nurse to come out too and got in touch with the doctors and put her on an antibiotic and have done what we can to keep her home. So far she's done better today. No temperature and breathing much better. She's been sleeping and on bipap most of the day. But we are giving her a break right now before bedtime. The first pic is her yesterday and the second one is her this evening. Thanks for praying for her and us during this latest sickness. We are thankful for the reprieve we got for the month of September.

It's just so hard....

...being this cute. 

Enough

Tonight I am grouchy. I've had enough. This poor child's bowel issues have gone on long enough. I just spent a good 5 minutes literally pulling chunks of stool out of her. And we've been doing this for almost two weeks now. I know it's got to be so uncomfortable for her. I'm mad that there isn't an answer why and we can't figure out something better to help her. I feel bad that I feel nauseous doing it when it's so painful for her to have to experience. I'm tired of it all. Yes, I'm venting. Will you please just pray that the right doctor would hear and help us figure this out?  Thankfully she's not miserable all day with it or anything. Just uncomfortable when we need to "check" and "help". 

Tummy Issues

Please pray for our girl tonight. I'll spare you the yucky details, but she's having some tummy issues (bowels specifically) and we are having to give her lots of extra "hands-on" help and she's still got more inside her that we can feel when we press on her abdomen.  :(  She's definitely uncomfortable but not having a back up of feeds in her stomach or anything, so we are hoping we can get her cleaned out and "moving" on her own as much as possible and avoid more invasive measures. Thanks!