Saturday, July 30, 2016
Friday, July 29, 2016
Saturday, July 23, 2016
Blogging from my phone at the hospital so this will be brief.
Madison's heart surgery went well, but she had some complications that I'm asking prayer for.
I'm starting to type through tears here, combined with lack of good sleep and a headache from you know where ... so I hope this makes sense and doesn't appear to be complaining . I know so many families have gone through so much more than we have.
First - here are a few happy pics of our Bunny from surgery day (Tuesday).
Just out of surgery - the nurses didn't even know we call her Bunny and look what they placed beside her :)
The incision she had was through her back and under her shoulder. While not as complicated as open heart surgery, the doctors have explained that the recovery is more painful because of the muscle that was cut and where it is: any time she breathes or moves, that incision is painful. Combined with this, she has a chest tube coming out from under her arm to drain off excess fluid.
This fluid is supposed to be clear. Instead it is milky white, which means she has developed a complication called chylothorax. Basically her thoracic duct was damaged during surgery - not because of any error, but simply because this is how that tissue paper thin duct can react when it is exposed. The fats that go through this duct (chyle) are leaking out and that's what we are seeing in this bulb. This is called chylothorax. Sounds like a character in a Dr.Seuss book to me, but unfortunately it's not so innocent.
Sometimes the thoracic duct can heal itself by placing babies on a low fat diet. Since Madison receives my breast milk in a bottle, the way to do this is by skimming my milk. This is a simple process that requires my milk to sit in the refrigerator for 24 hours while it separates into layers. We use a syringe to pull the low fat milk from the bottom of the bottle and then we mix it with a special low fat liquid formula that has any added nutrients she needs.
The problem is a) Madison has been in a lot of pain despite four kinds of pain medicines and is having trouble wanting to eat . And b) the formula that is mixed into my milk tastes awful. A dietician got us some Starbucks vanilla (go figure!) to mix in to mask the flavor, and for a few bottles this helped.
Yesterday, after a long day trying to get her pain under control, and trying unsuccessfully to get her to drink, she became dehydrated. So much to say but in a nutshell, it was an awful day. I can't tell you how much it broke my heart to see my baby pale and hurting and writhing in pain.
Her little arm is mottled and bruised from the arterial line and blood draws...
lots of nurses and doctors have come in to look at it and make sure she isn't developing any clots.
After an eternally long day .. lots more to say but I'm keeping it simple for time sake.. Madison had a feeding tube put in and started receiving my skimmed milk and the formula that way. She had iv fluids through the night as well, and this morning she is looking a little bit more like her after-surgery self. She's definitely still in pain and not her "normal" self, but a marked improvement from yesterday. THANK GOD.
I have to say that through all of this heartache we have felt the tangible presence of God and His grace - we feel people praying for us and we know that's what is holding us up.
So here's where we are at today : the low fat diet does not appear to be reversing the thoracic duct damage at this point. Right now Madison has orders for sedation and a central line to be put in, and her doctors are putting her on NPO for seven days. This means she cannot have any oral feedings and will receive all of her nutrition through that central
line. This is not pleasant for babies we are told - even though she is receiving nutrition she will think she needs
to eat. The reasoning for the NPO is so we can bypass that thoracic duct with her feeds and give it a chance to heal itself. If at the end of seven days she is still leaking milky fluid, she will need surgery to repair the duct.
Obviously we hope this doesn't end up in another surgery. All of our children at home (two hours away) are really missing us, and we them.
Your prayers are so greatly appreciated during this difficult time. Please pray for the thoracic duct to heal on its own so we can avoid surgery. Please pray as well for our Bunny to be out of pain and make it through a week of no oral feeds. Please pray for our children at home... we are all missing each other so much. Sam and I could use prayer as well.. I feel funny asking for it when Madison is the one hurting, but we really do need God's help.
I will try to update here as I have time. Thank you from the bottom of my heart for all your love and prayers for our girl .
Posting a happy picture of Madison and waving to ourselves in the future ...
Much love, Patti
Posted by Patti at 6:39 AM
Wednesday, July 20, 2016
Wednesday, July 13, 2016
Can I ask you all a big favor ? Madison's heart surgery is scheduled for Wednesday of next week. Could you pray for everything to go smoothly and also for a quick recovery for our bunny? I truly believe in the power of prayer, and I know God holds our baby in His hands. We are so grateful for all of your prayers, love and support - I just can't say enough about how much it means to our family. Feel free to repost this pic and hashtag #prayforbunny on your blogs, Facebook, IG, or on any other social media sites if you like. The more prayer the better!
Thank you from the bottom of my heart,
Posted by Patti at 11:17 PM
Monday, July 11, 2016
Catching up on the month of June here, with a post about my niece's wedding in Arizona.
The Rice girls all traveled to Flagstaff two weeks ago, making this our first out-of-state trip with no dudes involved. I took all four of my daughters with me, while Sam stayed back at the Rice Ranch with alllllll the boys. (More on how they fared later in this post, haha.)
I have a little confession to make here : for those of you who don't know me in real life, I have several very real phobias that I have dealt with from the time I was a child. When I say phobia I don't mean "that sort of freaks me out" phobia. I mean "panic sets in and I revert to a crying, non-rational, shaking from head to toe, mess of a woman" phobia.
One of those phobias is having dental work done. But that is for another post.
The other phobia involves flying. But only in airplanes. I have wonderful dreams about soaring through the air on my own, and I am always as happy as can be while doing so.
So I'm pretty sure my fear of flying in an airplane has something to do with being trapped in a large metal object that makes loud noises, coupled with the fact that I have zero control over that metal object. When it's just me alone in the sky with my arms extended, hair flying behind me and no loud noises other than an occasional bird chirping, I'm good. At least in my dreams I'm good.
But put me in a plane and all H-E-double -toothpicks breaks loose. It's not a pretty picture.
I always regret this metamorphosis after my meltdowns occur and I am safely on the ground. Meltdowns meaning - begging Sam to signal the flight attendant that she needs to come back here RIGHT THIS MINIUTE and explain to me why the plane is making that noise or so help me God I am going to run to the cockpit myself and alert the captain.
You think I'm kidding ?
I wish it were so.
Once during an overseas flight Sam actually did capitulate to my begging - I think he felt 17 hours listening to me crying and gnashing my teeth was too much for any man to endure - and he got the pilot to come talk to me. A nice old pilot who looked and talked like a British grandfather came to the back of the plane and actually SAT DOWN next to me and gave me a hug. He then proceeded to give me a lesson on aerodynamics and turbulence and how our plane was, at that moment, basically flying itself. That's how modern these planes are. He patted my knee and told me all would be well, there was NOTHING to fear, and then returned to the cockpit.
And I kid you not - five minutes later that plane DROPPED several thousand feet (at least it felt like it!) and everyone screamed and all of our dinner trays flipped over and the flight attendants all went running frantically to their seats while the fasten-your-seatbelt signs all lit up. A few minutes later things calmed down and a flight attendant came over to me and informed me "that NEVER happens" and we apparently flew over another plane and hit an air pocket.
That's when I started screaming hysterically and demanding they let me off at the first available stop.
Okay not really, that last sentence didn't happen, but I thought about it for sure.
So yeah, flying is not my thing.
Fortunately, several years ago I discovered there IS a cure for my flying phobia, and now I never leave home without it ...
I'm sorry if you non-flying-phobia people don't get this, or if you are gasping in disbelief that a pastor's wife who claims to looooove labor and delivery (so much that she feels "high" while giving birth au naturale) has to pop some (prescribed) pills to board an airplane, but there you have it. Praise the Lord for modern medicine, and pass the drugs.
I'll spare you the drooling, speech slurred, stumbling through the airport pictures of me, but suffice it to say we made it to the valley of the sun without any frantic dashes to the cockpit.
Oh, and Lily doesn't like loud noises on airplanes either, as you can tell by the photo above. My sister sent us home with headphones and a portable dvd player for her, and we were both as happy and as high as a kite on the flight home.
Well, Lily was happy, I was just ... high. And snoring contentedly as far as I can remember.
My brother and his wife went to Arizona for our niece's wedding too. He's a very warm fuzzy guy, as demonstrated in the picture below.
Okay, maybe just fuzzy.
This is a picture of Abigail and my mom at the rehearsal dinner ...
... I have no other pictures that are blog worthy, but let me just say the food was DELICIOUS. With a capital D. Nom nom.
This is my darling niece, Grace ...
... not the one getting married, though. In case you wondered. My sister has five children, the youngest four whom she adopted, and her oldest daughter Brittany was the one getting married.
Here is my little brother with my beautiful mom...
And this is Charlie, my sister's little boy ...
And here is the lovely bride-to-be ....
This was the wedding ...
Jeff is pictured above, and he married my niece. He is a riot, and he promised me they would come visit us in Oregon some day soon.
Mackenzie is on the far right, the prettiest bridesmaid I've ever seen !
My niece Grace is the flower girl on the left, and her sister/my niece Jade is on the right ...
And Charlie was the ring bearer.
And this was my absolute FAVORITE moment of the wedding ...
I think it's karma, because when Brittany was the flower girl in my brother's wedding (my son Jason was the ring bearer) she STOMPED down the aisle glaring at everyone, causing quite the scene.
I actually don't believe in karma, but if there was such a thing ... it would have been that moment when little Charlie threw himself face down in the grass in protest of marching down the aisle in front of everyone . TOO STINKING FUNNY.
Anyhoot, here's the kiss ..
Congratulations, Jeff and Brittany !
The weather was gorgeous, the setting was lovely, and I was so glad my girls and I could all be there for it.
Miss Lily was thrilled to dress up and pose here with Kenzie's bouquet....
... and later played many rounds of the beanbag toss with my nieces at the reception. She also tore it up on the dance floor - probably 50 wedding guests caught those moments on their cameras, but my phone died before I could capture even one :(
Here's my brother with his lovely wife Lori, who also happens to be one of my best friends in life !
And here are all of us girls ...
Josiah flew to Flagstaff for the wedding and flew home afterwards, but I look too fat in the picture we took with him, so I'm not posting it. So there.
The day after the wedding we drove back down to Chandler to my sister and mom's house. I grew up in Arizona and do NOT miss the heat - but I do miss Arizona sunsets ...
Miss Lily and Miss Madison enjoyed sleeping in at the hotel ...
... we spent two more days visiting my sister and my mom ...
Sam made sure to send lots of pictures every day, reassuring me that all was well back home at The Rice Ranch...
... whew !
And before long it was time to head back home.
Hope, if you are reading this, thank you for a wonderful vacation ... you may be taller and prettier, but you will always be my "little" sister, and I miss you like crazy.
p.s. sorry that I'm mom's favorite, but it's true.
Goodbye, Valley of the Sun !!
Posted by Patti at 7:45 AM
Friday, July 1, 2016
I was barely getting used to the fact that it was June and now it's JULY.
Does time fly by more quickly when we are older? That's what it seems like to me.
When I was school age and summer break began, it felt like the whole looooong summer just stretched out before us. I remember waking up on the first day of summer break each year and always feeling that same sense of relief that the school year was over and I could go back to sleep if I wanted.
We slept in late and enjoyed the summer-time privilege of eating cereal in the living room on wooden folding TV trays. We watched The Price is Right, Family Feud and Andy Griffith, and by the time Marcus Welby, MD came on we were ready to go outside and play.
We rode our bikes (mine was lime green with a "banana" seat and a basket on the front), rode our skateboards (neon yellow plastic and I think my sister's was orange) and roller skates (lace up white leather with squeeeeeky wheels). We had endless fake Olympic skating competitions, pretending we were Dorothy Hammil going for the gold ... I even had my hair cut to look like her one year. (Yikes.)
Some days we walked to Circle K to buy slurpees or Hubba Bubba Bubble gum (grape was my favorite!), and trading cards. My sister and I collected Charlie's Angels cards for several years, but it was always baseball or football cards for my brother ... and if I close my eyes I can still remember the chalky taste of that paper-thin dry rectangle of bubble gum that came in each foil package.
We swam in our pool, had diving contests, and played umpteen billion games of Marco Polo. We ate lunch and snacks on the back patio most of the time : pb&j's cut into tiny triangles, pretzels, carrot sticks, apple slices, or celery sticks spread with peanut butter. We had watermelon seed spitting contests, ate twinkies and ding dongs and drank kool aid by the gallon.
(Side note: somehow we exceeded today's quota of gluten and sugar and red dye number five and miraculously lived to tell the story. Gasp.)
We stayed up late (ten o'clock!) and had to be inside by the time the street lights came on. We crawled sleepily under cool sheets, sun-kissed and exhausted, and we woke up the next day ready to do it all over again.
I loved summer time.
And I still do !
... and we helped Naomi host a fun graduation party at The Rice Ranch to celebrate ...
Congratulations, Nurse Jason !!
Other summer events have included:
... spontaneous dance parties ...
... lots of Bunny worship ...
... seeing how long Hayden's hair will grow before my brother can't stand it anymore and flies out from the East Coast just so he can cut it ...
... enjoying the great outdoors (right here at home !) .....
Speaking of home - I featured our bedroom on my last blogpost, so today I'll post some pictures of the family room.
And right now I am smirking while I type, because "featured" is a funny term to use for The Rice Ranch. I love to look at pretty rooms on Pinterest and I always fantasize that some day - when I have less than 12 people living under one roof - my house will look like something on my "For The Home" boards.
But for now my primary goals for the home include a) trying to keep it childproof (outlets covered and sharp objects stored out of reach and b) somewhat tidy. Our furniture and decor might not be the latest and greatest, but they are practical and well-loved.
In fact, the reason I fell in love with this house when we first walked through it was because of the way it was designed ...we don't need showroom furniture or Pinterest-worthy wall arrangements, because the house itself is so pretty inside. The floor to ceiling windows bring the natural beauty of the outdoors right into our family room: it's like having a sixteen foot mural painted by God hanging right on our wall.
Whenever we have moved, I always pray specifically for things I hope to find in a new place. An open floor plan was at the top of my wish list this time - I love for all of us to be close to each other, even if we're not all in the same room. Our family room, kitchen, and dining room are all connected, and the upstairs looks over these rooms from the landing above. We made the room directly above the breakfast area into a playroom for our little ones (pictured below in the top right hand corner) so that even when they are playing upstairs they aren't out of sight.
The dining room (behind the family room) is perfect for our super-sized dining room table and chairs; it opens up (on the right) to the entry way and Sam's office as well.
(Father's Day hugs in Daddy's office)
Well folks, it's way past my bedtime, even by summer standards, so I'll wrap things up with a little announcement ...
... after much consideration of all your insightful comments on my last blogpost, I've decided I can't bring myself to change the name of my blog. While I do love the name The Rice Ranch, I just can't - at this point anyway - part with A Perfect Lily. Maybe I'm too sentimental, or maybe I just don't like change, but either way feel like keeping the name the same right now. Thank you so much for contributing your thoughts and helping me to make a decision. I always love reading your words and comments just as much as I love sharing my heart here with you!
If new readers find their way here they will just have to do a little backtracking to figure out where this blog began ... with a beautiful, amazing, and perfect little girl
named Lily :)
Posted by Patti at 7:29 PM