Wednesday, April 9, 2014

Update #456,890 (April 9th)

Well, it feels like we've been here forever. It's only been since Sunday. I can't imagine families that need to stay in the hospitals for a long period of time - like weeks to months. Emma's been given pillowcase that's homemade, bags that kids have colored and made themselves. The Ronald McDonald cart comes around every few hours and offers Emma, Bodie and us parents anything we want. Laish grabbed a towel for me one day. Drinks, cookies, snacks, toys. At the RMH house they have a treasure cove for the patients and siblings. It's ridiculous. Laish has been given something every 3 hours or less. He's going to have major withdrawals when reality sets in and I ask him to put his dishes away or clean up his room eventually.

So this morning they told Emma she's got to spend the night again. Then they kinda said maybe she wouldn't have to. We've all given up hope of leaving today but not Emma. She keeps asking. If you will notice she has no mask on and no nose oxygen. She has been staying at the 91-95 without any oxygen which is awesome! Her respiratory is way down today 18-25 range. Another Hoorah. Her IV is still in but nothing going in it. So that's dumb. Her resident doctor was hoping to get that out and just give her pills for the meds. Right now she is on every 4 hour of albuterol and Flovent. Which was the goal. Awesome. EVERYTHING IS AWESOME. Now please, let us go go go.

Tuesday, April 8, 2014

Midnight thoughts

So this is what it's like to have internet 24/7 eh? Wow. Pro's: I can tell the world how Emma's doing and stay plugged in to my computer to keep my peeps in the loop. Con: Really only 1 and it's enough: I don't spend time with anybody but my notebook, kindle and phone. BAD BAD INTERNET. You guys wonder why I went w/o for 10 years??? This is why. Now here's my sermon: PUT UR DANG PHONE DOWN, NITA (and a few others of you, no names in particular except well maybe Reggie). I mean.........I love you Reggie. More than my other siblings. =)

We are back again at the Ronald McDonald House (RMH). Judah in his jailhouse crib, me and Bodie smashed in to a bed together bc us Detwiler's are close like that. FAMILY BEDDING - I vote yea and the rest of my peeps always tell me it's nay for them. Whatever. Most of you that know me, know I don't do stuff to stay in the cool crowd anymore. We have 2 beds here but we like to snuggle. Aaron pulls duty again staying at hospital with Emma. Blaine came to get Connie and take her back home now. She's gotta work and do normal people functioning stuff. Thanks Pop Pop for bringing my red bag so I can look and smell good again. (If you call showering and putting your same clothes back on feeling good. Ick.) I may have forgotten about Laish's hygiene for a couple days there. Tomorrow he is getting a shower and brushing his teeth. NO time to think about buying underwear or stuff. I told Aaron to go out and get clothes for us at the outlet place. He scored huge for me and Emma. He came back with socks and a cap for Laish. Socks for Aaron. Really, babe? Whatever. You did good babe.

***Fun God Note: This past Sunday (well a week ago at my church) Denise Knepp, my good prayer buddy, gives me this devotional book called Jesus Calling. I have been hearing about it and she keeps talking about it so WA-LA it is in my church mailbox this past Sunday......just when I needed it too. I grabbed it to take along on the trip. I pulled it out to read April 7th's devotions with Emma last night. It says stuff like, "I am the Potter, you are the clay. I arrange each day of your's to form you into a preconceived pattern. My love is at work in every day of your life. Some days are smooth and some days you may seem to be going upstream. But to stop when that happens and talk to me about it and let me guide you through the streams and let the circumstances mold you into the one I desire."
Oh. My. Gosh. I could barely read it bc I was bawling. She just looks at me and says, well that wasn't a very good one. Meaning: I don't want to think beyond a 10 y/o stuck in a hospital bed on my Spring Break but I really know that this is making me a better person and drawing me closer to God too. I also interpret what dogs are saying, specifically our dog Kattor and our cat Hobbes. Aaron thinks I'm a whack job but I truly do believe I can tell. Right now Kattor is thinking how much she misses us but she's so grateful that grandma and grandpa and Uncle Reggie are taking good care of her. Hobbes is thanking Kinza, Sadie and all the Yoder's for feeding her and keeping the fish alive so she can swat at them while we are gone.

The day is done. Day is done. Day is done. Emma was looking so much better with just a nose oxygen on 24/7 now. Well and all the other medicine too. But NO MASK. Thank you sweet Jesus. She still has the major allergy shiners - what they call the black bags under her eyes (kids with allergies. apparently Judah has them too. Whatever. Stop cursing my newborn with you medical problems, you Penn doctors & nurses.) They are out anyway bc what's his name coach guy that ruined life for them. MORAL: Don't molest children. Common sense. Really, the staff here is great. Awesome. Every last one. Even the janitor and lady that brings and picks up Emma's tray of food. This is a teaching hospital so there's always a resident, nursing student or like a row of 6 people standing in a line going through things while we try to pinpoint who the real doctor is. Half the time I honestly don't know. I just smile and wave. JK. I am a very active parent. They don't really look me in the eye that much when I am nursing Judah. I thought this was a children's hospital? You don't see mother's breasts around here? Does ANYONE NURSE THEIR BABIES ANYMORE? I'm delirious. I gotta get some sleep.

OH MY GOSH, Beck. Look at my writing. I apparently type just like my mom. Scary scary scary!

Update # 2 on April 8th

So Emma's coming back. These pictures prove it. Her spirits are 100% changed, partly bc mask got to come off and just nose piece for oxygen right now. And partly from all your prayers and texts. She hated that mask. She stopped the continuous albuterol so she's not so jittery and agitated.
Here are some happenings: Aaron reminds me to change my shirt. I only had 1 so he went and bought me a couple. I may stink too. Bodie has spilled bubbles. He put a Mento in a Sprite and it overflowed in Judah's diaper bag. (Thank you RMH for the new diaper bag). How do you contain an 8 y/o active boy in a small room? His attention span sucks. He's got cars and little toys. Internet. Cable. New socks. New hat. He should be having a mini vacation for crying out loud. At the RMH they have Wii U (whatever that is), Wii, Xbox, everything a little boy could want.
I don't know what I would've done with out my dear mother in law being here. Thank you Connie for staying with Emma and sleeping on a chair for 2 nights in a row so I could be with Judah. You are an amazing mother and Grammy. Your patience and relentless doting on Emma made me so extremely happy and exhausted at the same time. She adores you! I know this trip cost you and Pop Pop too, time away from work and the church and traveling back and forth (Thanks Pop Pop), bringing our junk to us. We love you both!



Update Tuesday April 8th

Update today: She actually slept well last night and her breathing in one side of her lung is def better. But not well. The doc told me we are looking at a few more days here though. Emma didn't take it as hard as she did the past 2 days. Ask me again tonight though. Her respiratory is down today in the 20's and 30's. Yeah! She isn't doing that quick breathing, short breaths. Her heart rate still up and she needs 24/7 with oxygen. The RT came in (bless you dear Pam) and said she can take off her oxygen mask for a whole 2 hours this afternoon. Said her 1 lung has barely any wheezing whatsoever. Just the right one that is still bad. Emma, you are a trooper. She gets super embarrassed by me (puh-lease). She's doing puzzles with Grammy, Daddy and Laish went shopping for us bc I brought no clothes with me. Yep, girls, I am wearing my gray sweats, flip flops, nursing tank and huge green shirt. For all the days. Oh yeah and underwear too. No, Sandra, I am not wearing that little red thing you gave me. Good grief.
The next step is to take her off oxygen w/o it falling so low. They are going to have her be able to walk around a little bit too once that's off. She has only been able to get up and go pee and quick come back. The ultimate goal is that she can be off everything and just use albuterol inhaler every 4 hours. Then we can think about discharge. They asked how long we had. Um, our spring break is going on now til Saturday. They were like, oh good, we have time. Emma's just like, uh no, I want a spring break. Emma, when this is over we will get you the moon, babe.
Emma hates her pic taken so you don't see many of her, but I am trying. I am sure she would love to hear from you all. She misses everybody!

Pics from Hershey Children's Hospital





I Just Wanna See You Be Brave.........

How did I get from packing for a week's vacation at Grammy and Pop Pop's house in Chambersburg, PA to sitting in a Ronald McDonald House because my daughter has been in Hershey's Children Hospital for 3 days?
I sit here in our room at Ronald McDonald House (that is totally free, by the way, functioning soley on grants and donations. Bless you people who give). Rewind to the beginning of our travels to PA.....We left Thursday night to come to PA. Both Aaron and I hate traveling. It causes major muscle pain and headaches are a given. But we love to go visit. We were anticipating seeing Blaine and Connie and getting some much needed sleep (me) from being up at night with Judah. By the time we got here, Aaron had a full blown migraine and we had almost used up all my prescription pain meds for the week. Ugh. Ugly week ahead I could tell. Oh Lordy, I had no idea what I was in for.
Saturday afternoon Connie had taken Aaron to an emergicare for his headache. They gave him a Toradol shot and said that's all they can do. They don't give out pain meds there. He went home and tried to sleep but pain so bad, Connie took him to Chambersburg ER. After an entire afternoon there, they basically gave him some Demoral and he came back home. They also have a policy that they don't treat migraines with pain meds. Well why did we come then? He came home and by Sunday morning he was trying to function normally but still struggling.
At 3am Sunday morning I woke up puking my guts out. Last week the kids both had the flu, along with my Dad, my brother in law Scott and their kids........it was not my turn. This isn't your normal flu. It feels like your guts are being torn apart and lit on fire. I had the Big D all day. How was I gonna function and nurse Judah even was what I was thinking? Everybody had gone to church (minus Aaron but he wasn't functioning yet). Aaron's sister Beck and hubby Chris and kids decided to take off for their home in VA so they didn't get the flu too. Unfortunately, they didn't leave quick enough and by that night Eliza was puking. Sorry, my sweet punky.
By Sunday afternoon I attempted to sit up. Emma came to me and was wheezing. She said she used up her albuterol inhaler. Uh What? I heard her wheezing through the night bc she slept in the same bed as me but she often does and sleeps basically sitting up at night bc of her asthma issues. She began to panic bc she couldn't breathe. I had forgotten the nebulizer that we had borrowed from her Aunt Berta. Dumb. I began to look online for places to buy or rent a nebulizer, calling our doctor on call, missing his call back, calling again, never getting them, consulting with local pharmacies here, consulting with my sister Shelly since she works at a home medical place, finally coming to the conclusion that we better take her in to ER. Amidst puking and pooping my brains out, I hugged her and told her to be brave. Off she went to Chambersburg PA's ER with her Daddy and Grammy.
Fast forward 4 hours. I get a call from Aaron asking if I am sitting down. Um yes, more like laying on the floor with Judah bc I can't get up. Blaine had taken Bodie to park to get some fresh air and run out his pent up energy. He said they are transferring Emma 2 hours away to Hershey Children's Hospital. Not 1/2 hour away to Hagerstown, MD, not 1 hour away to Harrisburg PA but to Hershey. They were transporting her via ambulance. Grammy was gonna ride with her and Aaron was going to follow in his vehicle. I hung up and cried. Actually more like bawled. Or waled. I was an emotional wreck. I wanted to be with my firstborn and hold her. If you know Emma, she is brave. Very brave. But when she sees her mom, she lets her guard down and wanted her to be able to cry if she needed to. I wanted to hold her and hug her and tell her she's going to be okay. To not be scared. Everything I was feeling and wanting to hear too.
I woke up Monday morning feeling a bit better from the flu. Aaron called and said that Emma is staying Monday night for sure. He said Hershey Hospital is HUGE and the staff is amazing. Apparently they whisked her in here from ambulance on gurney to her private room with her nurse waiting for her by the door. They had transferred her bc the 1st hospital said they had given her 3 or more breathing treatments and she was still getting worse. The doc said Hershey Children's Hospital is equipped for respiratory issues for children her age. Yes, yes they are. Monday afternoon at 1pm me, Blaine, Judah and Laish took off to be with Emma. I couldn't wait to get there. I played it cool to Blaine that there was no rush, yes, go ahead and go to the church and get some work done first.
When we got to the hospital we went straight to Ronald McDonald house. A room had just opened up and we had to go check in first. Ugh. The lady was sweetly giving us a tour and I just wanted to scream and say I wanna go see my daughter. We got the room bc Aaron said the docs said Emma will definitely have to stay the night. Apparently nurse Sarah didn't know Emma didn't know this and said something. Emma burst into tears. She wanted to go home. Home home. When we finally got to her room, I hugged her to pieces. She seemed "normal" in the sense where she can't wait to see you but when you get there, she doesn't know how to tell you that she's glad to see you so she acts like she doesn't care. Well, that's my interpretation anyway. At this point she has had tons of albuterol treatments. Do you know what someone is like after that? It's like speed. She said her heart is beating out of her head. She can't stop shaking, She is jumpy. She's constantly squeezing something. Rutchy. Rutchy. Rutchy. She's irritable and annoyed with everything. Her heart rate stays about 170 or more. Normal heart rate is 60 to 100. The docs say it's okay for her little heart to be beating that fast. She keeps an oxygen mask on 24/7 except to eat and has to put it back on during that when machine starts to beep. Her oxygen level should be around 95 to 100 and she can barely keep it at 93 with oxygen on 24/7. Her breathing sounds like a freight train. Repsiratory Therapist (RT) let me hear it. Her respiratory breathing # was between 40-70. The RT said it should be about 12. She just is taking quick short breaths and coughs like she's smoke a billion cigarettes. Every doctor that came in just kept saying quickly, nope, she doesn't sound good. They said you don't mess around with asthma. Nurse Sarah asked if she could talk to me in private. I thought oh Lord, now what. She said she just wanted to warn me that Emma is probably going to be here AT LEAST another night. Get her prepared. All evening she cried. She wants to go home. Her IV hurts her. She wants to take her oxygen mask off. Even though it's decorated with animal faces, it hurts her ears and head and she's not comfortable. Oh Emma, I need to see you be brave. Me and Grammy held her and prayed over her. Emma has an easy time telling me how much she hurts but when a nurse or doc or RT comes in, she's fine. She's brave. She's very brave.
I left bawling again bc she wanted me to stay but I had to be with Judah to nurse through night. So Daddy stays but Grammy stays too bc Daddy falls asleep and doesn't wake up when the nurses come in like Grammy does. Plus, to her dismay, Daddy farts in his sleep when nurses come in during the night. She tried to cover her face with her stuffed animals from embarrassment. I guess the nurse just feigned ignorance.
We got to Ronald McDonald house and I walk into our room and there's a crib with a quilt, a 31 diaper bag with a sticky note "from RH mgmt" as if it's no big deal. For some reason that hit me and I couldn't quit crying. Everyone had been so nice. Thank you Jesus for people who love their job.
Emma, Mommy is so proud of you. You are so so brave. When they come in to stick you for blood and your brave tears flow when it's all done, it makes me love you more. When you look at me with those eyes full of pain and fear and my Momma heart about rips in two bc I want to take it all away, I know God is working in you and making you a stronger person. And when you ask me with tears why you have to be the one with asthma, eczema, itchy toes, why me? I don't have the answer, my sweet girl, but I do know that if anybody has to be brave, it's you. God made you with a special quality of amazing 10 year old strength. You wear that strength with pride, baby girl. My theme song is the one by Sara Bareilles that you have been singing for weeks and weeks......I wanna see you be brave, Emma Jae.

Sunday, March 2, 2014

Judah Blaine Detwiler

So it's been 2 1/2 months since we rushed away to the hospital on our 14th wedding anniversary.  And if you haven't noticed it's been 1 year and 4 months since I've posted something. Don't ask me why I chose today to write something. Here's what happened in a nutshell:
I felt some cramping Tuesday September 3rd. No biggie. I always feel pain. You quite guessing if that pain means you are having a heart attack or what. You just learn to trust God that if it's your time to die, He'll take you. I know that sounds like my dad's way of thinking-I can eat 3 bowls of ice cream. If God takes me away bc I'm obese then it was supposed to happen. HA.
Anyway, so my water broke in the middle of the night. Bodie was sleeping next to me at the time. I woke up in a start and whoooooooooooosh. Water everywhere. I know some women tell you it doesn't happen like that but it did for me this time. Glad I wasn't in a grocery store. I told Bodie to go wake up Daddy who happened to be sleeping on the couch. NO, we weren't fighting. Don't ask. We kind of have a messed up sleeping arrangements. Well messed up to you guys but not for us. Currently kids have a made up bed on the floor in our bedroom. Judah sleeps in crib next to them. Me and Aaron in our bed eventually. Kids start out in our bed and throughout the night we play musical beds. It works for us. Don't judge.
Where was I? Oh, I had to tell Aaron 2x until he finally figured out we were going to have a baby this morning. He jumped up and got the kids around. We took them to my parents at 3am. By 3:30 in the hospital and getting hooked up to IV's. Epidural done.

Okay and now it's been 6 months since that day. Maybe I will get this blog post published before he's a year. To finish the birthing story bc who doesn't want to hear who had the best (and by best I mean worse) birth? This one was no biggie. Except that it hurt. Like a mother. And then he was out. Ta Da! Baby born into the world. They don't take him away anymore. They give you this nasty pasty baby and you are supposed to cuddle with it. Yeesh. I kept asking when they were going to clean him up. The nurses just kept saying, NO NO, skin to skin. I wanted to punch them and ask them if they wanted to be all snuggled up to that pasty white sticky skin. I know I sound like a jerk but he was born early so it was weird. Eventually I calmed down and realized I went through another humbling birthing experience (really God, this is how you finally decided to have babies brought into this world?). I was so in awe at this little guy.

6 months later I weigh the same that I did when I was pregnant, I don't sleep at night, and I am addicted to caffeine. Maybe some other things too BUT I have a sweet little Judah Blaine that looks up at me while nursing and smiles his cute little toothy smile, waits for me to be done yelling at his bro and sis, look down at him so he can go back to nursing. Just so we can do it all again in another minute. And I think, dang, what was life like before Judah? I may have more chronic pain and migraines but I have Judah. I may not sleep at night but I have Judah. I may have to work today, but I come home to Judah. (um and Aaron, Emma, Laish too). I wouldn't recommend to have a kid at 37 but if you get a Judah, then maybe you should. Especially if you have an Emma and Laish to help out.