Chest x-ray and bugs...

A few weeks ago, we took Waverly in for a chest x-ray, because her pulmonologist wanted her to have one when she was relatively healthy, for her, to see what a "good" x-ray looked like (to compare with when she's sick). The result of that x-ray was not great: she still had several areas that were hazy and streaked, including a couple of bigger areas. So he ordered a culture of a sputum sample to see if any bacteria grew out of it.

We just got the results of that last week and it ended up growing three "bugs": the bacteria pseudomonas (what used to infect her with the UTIs so badly), klebsiella, and staphylococcus aureus. This isn't good news, and I'm not quite sure why she's not really sick with it. But the doctor called in the antibiotic cipro for us to have on hand and give her as soon as she shows signs of more sickness. The issue with cipro is that she's used it a couple of times before, and every time we use it, it's one less time that we can use it in the future, because it will eventually stop working as the bacteria becomes resistant to it.

She's had a ton of seizures today, and is sounding a little more junky, so I'm kind of waiting to see if she's starting to get sick again. Time will tell. She's been getting pretty sick with respiratory stuff about once a month, so in that regard, it is about time for her to get sick again. Of course, we'd love for her to prove that time table wrong any time, but recently that's been her trend.

Please pray with us regarding this latest news. It's been kind of hard for me to hear, for some reason, as I worry that it's just one more step in the wrong direction for her. Pray that we would trust the Lord, no matter what the future may look like, that we would have hope, and mostly that He would be glorified.

Vacation...

Well, it was a whirlwind, but vacation went well. Waverly enjoyed some special time with mommy the first part of the week while everyone else was gone, and then with daddy the second part of the week once we switched places. On the other end, both Johnny and I enjoyed some special concentrated time with the big kids while we were each able to be with them at the beach. I loved being able to pour into them, and not have to worry about splitting up or if something would be ok for Waverly or rushing back to get to her and relieve the other person. We are still sad that it had to be like that, but we feel like it was best for everyone. Especially since Waverly ended up sick on Tuesday (the day before I left to go down there)! She ended up getting better by the next day thankfully, as I was a mess for a while about the prospect of leaving her home sick (even though I knew Johnny would be with her and would take great care of her). I'm glad she cooperated and allowed me to enjoy my time away though!

Everyday Life

Sometimes it's just hard. The seemingly little things you would never think about until you have to face them. Things that most people take for granted in everyday life. Like playing outside with your kids. When just one of us is home with all three kids, we have to weigh the options. Take the older two outside to play, and risk Waverly getting very sick from it from breathing in the pollen (and having to miss breathing treatments since they are so frequent), or make the older two stay inside the whole time, watching the beautiful day from the window? We can never do family errands together, unless we have a babysitter for Waverly. Occasionally if we are out and have her with us, we may make one stop, but that is very rare, because it is so much to get her in and out and it's hard on her to be out for very long. So, again when we have no nurse at home with Waverly, if Johnny and I want to go check something out together, we have to wait until someone is available to watch her. You can guess how many people are able to help us out with her. Now that it's nice out, there are lots of things happening in the evenings. Even simple things like neighbors outside hanging out and kids playing until later. The nurse leaves at 4:30, so we are left to decide which one of us stays in with Waverly and which one goes out with the kids. No more whole-family time outside until late in the summer evening. Even if we did decide to risk it, she needs to eat via feeding pump around 6:00 and breathing treatments start around 7:00. We can move that back a bit but it also moves back the rest of her nighttime care like cathing, etc. It just gets so complicated.

Family vacation. We both felt it best not to try to take Waverly this year. And it breaks our heart that our "family" vacation won't be our whole family. And what's more, like most things we seem to do now, it will be split. Johnny will go for the first half, then he'll come back, and I'll go for the second half. Because even though we have daytime nursing care, we don't have 24/7 nursing, so we can't leave her with someone and both be at the beach together. We won't be able to enjoy together the sound of our kids playing in the ocean or building a sand castle. And I worry about them, not seeing us together with them, not having their sister with them.

Even now, whenever we go somewhere, they usually ask, "Who's staying with Waverly?" because they know she doesn't go out often. I don't want them to disassociate her with our family. Not that they do, but they just automatically assume she will stay home from everything since she usually does. It is so hard to know what the right thing to do is.

Park trips. Church softball games. Gardening and outside work. Grocery store trips. All of these become big decisions as to what we will do, split up again or risk taking her out. Contribute to the separation or potentially put her health in jeopardy. It's just hard. And although I know some people have it even worse, and have had to face these questions for much longer, and have more to face than even I know or realize, it still just stinks. But it does make those family outings that much more special. The kids love it. And even though we are nervous about how Waverly will react (will she seize from overstimulation, cry all night like she often does from exhaustion from being out, get pneumonia again from exposure to who-knows-what), we try to soak up and treasure those sweet moments. So even if it just seems like a routine morning at church, or a family dinner out, or a trip to the park, if you see us all together, realize it is a very rare and special moment for our family. Turning ordinary times into extraordinary.

A few pictures lately

Life has been so crazy and busy. I've had many posts and thoughts to share but simply run out of time and energy by the end of the day to share. But I realized I had some cute pictures that I at least could post!  

Waverly got some balloons for her birthday party (post to come) and LOVED looking at them when we brought them home. They stayed close to her side!

Sweet time with brother. 

She was less than thrilled the other night with her breathing treatments and had this face the whole time. Even with a grouchy face she's super cute!

These two are from this morning!  She isn't smiling a lot but we can occasional get some sweet smiles in the morning and then again at night when she's in bed. 

TWO YEARS OLD!

A birthday we weren't sure we would see with Waverly-TWO! We are just so amazed at God's goodness to us to allow us this sweet and precious time with this girl. Enjoy just a few pictures and some information about her over the past few months...

We think she is entering her Terrible Twos. She will often set off her pulse ox alarm or pull some other attention-grabbing trick (like sneezing so hard she screeches beforehand) when we are focused on other things or doing something that is about someone else. Or she will just have a seizure. It's happened enough times now that we're not sure that we can continue to call it coincidence!

This is a typical Miller-Dieker face. How cute are her sweet cheeks, her little nose, those lips?

We are so blessed to still be able to see her smile. Although it's not very consistent, and we may go weeks without one, she will flash us these huge grins and we just go crazy over them every time. We never tire of seeing her smile!

This girl is loved by her siblings. They love to hold her, play with her, talk to her, kiss and hug her, and even tattle on her sometimes!

 Did I mention how much I love this face??

Waverly has gotten quite spoiled lately to her mommy. She loves to be held and snuggled, and will often fuss if she is tired and needs to go to sleep and wants to be held to do so. But several times recently she has been quite fussy, and whoever has been holding her has not been able to comfort her. As soon as I picked her up in those times, she has settled right now and gone to sleep. I love it and will take it any day! She also gets rocked to sleep most nights, and I'm ok with that "habit" as well! 

 She's enjoyed some outside time and sunshine some, although until the pollen gets a little better, we've had to limit that time since she seems to get sick often afterwards. But you can see how big she's getting here in this picture.

 Waverly has experienced a lot of sickness and setbacks these past 6 months or so. She's had pneumonia several times, several hospital stays, and lots of medications. We try to keep her at home as much as we can, which means a lot of extra treatments and work. But it's worth it for her to be home with us and our family to be together. She's getting a nebulizer treatment here.

 This is her cough assist machine. It helps to mimic a cough for her, and gets the mucous up out of the lungs. She HATES it, but it's good to get the big plugs of mucous up, especially when she's got pneumonia or is having desaturations (low oxygen levels).

 Of course, with all the sickness comes lots of suctioning as well. She's holding her suction machine close.

 She loves to play on the iPad with her big brother and sister and watch things on it while they play. They will sometimes take her hand and help her touch the screen to play the games. I love seeing them interact with her and involve her.

A few stats about Waverly these days:
-She is about 32 inches long, which is in the 25th percentile.
-She weighs about 22.5 pounds, which is no longer on the percentile chart.
-She takes around 15 medications (including supplements) each day (most of them multiple times a day). Yes, that's a lot.
-She still eats every 3 hours during the day (eating takes about an hour each time) for 4 feedings each day, and continuously overnight, all through her gtube.
-She usually goes to bed around 8:30 and gets up for the day around 7:30. Although she is not necessarily sleeping that whole time. She often wakes up during the night or early morning, sometimes more than others. Other nights she sleeps all night just fine. We never know!
-She uses her bipap for at least a few hours most days, and sometimes sleeps with it all night (when she tolerates it).
-She is on oxygen still all day, anywhere from 1/2 liter to 3 liters depending on how she's feeling. Occasionally she will tolerate being off of it, and we try that as much as she will tolerate it.
-She is still cathed every night to empty her bladder, and gets her blood sugar checked every night as well.
-Her seizures are better, but we still see them more often than we'd like. When she's sick she usually seizes several times a day. When she's healthy and doing really well, she may go several days without any.
-She had 4 hospital stays totaling 13 days and several ER visits this year (and too many doctor appointments to count!).

Waverly, we are so blessed by your sweet spirit, by your strength. You smile lights up those who are blessed enough to experience it, and your eyes are so deep with a knowledge that goes beyond my ability to know and understand. You, little girl, share so much by not even saying a word. You love unconditionally, you give sacrificially, and you remind us of what's important in life, of who we are, and of Who God is. You speak of His goodness and of His grace with your life. Our hearts break when we see you hurting, struggling to get the next breath, seizing and out of control. We pray that God spares you of some of that pain, and wish that we could take it for you. You teach us to long for heaven with everything that is in us, for a time when you will be perfect and happy and whole, untouched by the fallen nature of this world. Until that day, we pray that your life shouts of His goodness and glory to all who hear of you, that God would be glorified, worshiped, and praised. We love you baby girl!

For related posts see:
Birth Day Pictures
The Beginning 
Diagnosis
One Year Old! 
One Hour Conference Room Meeting
I Don't Want It To Be Real

Pneumonia

This post was from Saturday, May 4th.

Waverly ended up at the ER yesterday evening after struggling to breathe again yesterday afternoon. Her tummy was a little distended and her sats were all over the place, and she was requiring extra oxygen. They did a chest and abdominal X-ray and determined she has pneumonia again in her lower left lobe this time. They started her on antibiotics and her sats stabilized, so they gave us the choice to stay for the night (they had a room ready for her) or to take her home. Since she was doing better we opted to come back home. She did great overnight and we even got some smiles today. She is quite the little stinker! Please pray for healing for her lungs as she battles this once again.

Sick Again

Waverly woke up very early Tuesday morning a very sick girl. Her monitor went off around 3:00a.m. and no amount of oxygen via her nasal cannula would get her sats back up. So we put her on the bipap. She was on 8 liters of oxygen through her bipap (the max we can do here at home), and her o2 sats were in the low to mid 80s. It was a very scary couple of hours for us, as we debated what to do and what the consequences of our actions would be. We knew that if we took her to the hospital, she would likely be intubated and placed on a ventilator. Thankfully, after we administered some early morning breathing treatments, her saturations came back up enough that we felt like she could stay home a little longer. Later that morning, around 8:00, her fever started. Once again, that thankfully came down with treatment (sometimes she doesn't respond to treatment for a fever).

In those early morning hours holding her and rocking her and seeing her struggle for air, I realized that even now, just a week away from her birthday, she still may not make it to two years old. Things can turn around so quickly for children like her, and in one instant she can go from seeming pretty stable and healthy (for her), to very very sick. It was the most scared I've been for her in a long time.

We are grateful that she had about a month in between these last respiratory illnesses, and are hopeful that if she can weather this pollen, she will be more stable for a while.