Monday, December 20, 2010
Thursday, December 16, 2010
We found out we were pregnant with Jonathan just before the year began. And were a little shocked by the timing, but have been so blessed by our sweet baby boy.
We started off the year on a cruise with some of our dearest friends. After a large amount of scripture memory we went to 3 ports and spent a week, including New Years, with 13 couples.
Monday, November 08, 2010
Saturday night, November 6th, Ella went to bed as she normally does...happy and in a good mood at around 8:30pm. Joe and I started shutting down the house and then he went to feed Jonathan and I went to bed (we alternate feedings so I had the overnight shift). As I got in bed a little before 11pm I heard a noise, I totally thought it was a dog far away because it just sounded like a faint sound over and over again (barking dogs at night drive us NUTS). I decided to sit up and see if it was coming from one of the monitors in our room (one for Ella and one for Jonathan...Will we can hear screaming from anywhere in the house). As I got oriented I realized it was coming from Ella's and then suddenly realized that, although it could be her kicking her bed in a rhythm (totally normal), I needed to check it out. I found her seizing in her bed, left the room to say "Joe, seizure" and went back to get her. Ella's seizures are not pretty. They are violent and scary and messy. She had vomited and her body seemed to be convulsing more than normal...and normal is pretty bad. We have our system down so we administered her Diastat (rectal seizure meds) and checked the clock. If the meds take longer than 5 mins to stop the seizure then we call 911...the seizure lasted 10, that we watched. Yes, we sit there and watch her, pray over her, sing her songs and tell her how much we love her, how strong she is, and that it will soon be over...it's a long 5 minutes. We can't hold her or try to make the convulsions stop, we just watch and wait. By the time the paramedics arrived they had slowed down considerably, but she was not "back" yet. I later learned that this period after the seizure is the Postictal state...as they said the word about 50 times that night. So, the paramedics didn't even get vitals at the house, they just loaded her up on a stretcher and we got in the ambulance and headed for Medical City...Joe was following shortly as soon as his mom arrived to take care of the boys.
Let me take a minute here to say a few blessings that have already occured up to this point in the night:
- I had Ella's monitor on and heard her...usually if I go to bed before Joe I turn the monitors off so that I can fall asleep and he turns them on when he comes to bed. All of Ella's seizures (up to this point) have happened early in the morning so I've never considered one to happen while we're still awake.
- Through all of the firemen and paramedics being in the house (probably 6 or 7) neither of the boys woke up or made a sound. God knew that we needed to be able to focus all of our attention on Ella and the boys slept soundly at this time.
- Joe's mom lives 20 mins away and has come to our house for almost every seizure so that we can both be up at the hospital...we work much better as a team and a unit.
So...we head to the hospital. I'm with Ella and feeling pretty..."seizure as usual" until I realize that she's breathing really off and isn't acting her normal "post-seizure" self. Within minutes she's vomiting...has NEVER happened with a seizure before this time. It was so strong and forceful...and then the room erupted. They weren't sure she was protecting her airways so they called in a team of doctors and support personnel to possibly intubate her...I was overwhelmed at the number of people who were on my small child. One guy looking down her throat, people on either arm starting lines, people getting supplies ready, and a chest x-ray machine was wheeled in...and Joe wasn't there yet, I literally thought I was going to pass out or break down crying. They decided not to tube her because they found just enough gag reflex to believe that she wouldn't aspirate. In walks Joe, and boy did I need him. They put oxygen on her, and waited for her breathing to regulate and for all of the labs to come back. We did a urine sample (poor child has been cathed so many times!) and we waited...and waited.
More of God's love for us:
4. A very dear and wonderful friend of ours, Catherine Couch, went to our house to stay with Jonathan. This was so special because he's still at the stage where he needs to each at least once during the night and then again early morning so it was amazing that we had someone take care of that so that my Mother-in-law didn't have to.
We waited and watched as the one o'clock hour came and went...twice (ah, daylight savings). By about 2am (5 hours after the seizure started) we got word that we would be moving to a Pediatric room and by 3am we were settled in and ready for a couple hours of sleep. Sleep. Our room had two beds, which was actually perfect. Joe slept on one bed and I slept with Ella. Ella in a hospital bed is dangerous. She can move around and get around, but has NO concept of falling, getting tangled in cords, or hurting herself...so someone had to be with her at all times, no exceptions. Sleeping in a hospital bed is never comfy, add in a 4-year-old, wires and IV lines, beeping monitors and pumps, and someone coming in every 4 hours to check vitals...I got about 3 hours of sleep that night. Sunday was long. We woke up and realized we didn't know any more than we did a few hours before. I headed home for a couple of hours to hug the boys and check on my mother-in-law. I got a chance to watch our 9:15am service at church with Josh Hamilton as the guest and loved that I got to catch it.
God loves me, Part 3:
5. As I was at home to take care of some things I got online and realized my best friend, Stephanie, who lives in Oxford, England as of 2 months ago, was online. WE GOT TO SKYPE! I got to tell her about Ella's night "in person" and we got to talk. She and her girls prayed with me (and Will) and we got to catch up. I saw today that it was almost 45 minutes long but it seemed to go by so quickly. There were tears shed as we hung up, but God knew I needed her that day and I was so blessed by Him.
So, I went back up to the hospital. Joe left to come home and thankfully Kristie (who used to be here full-time) came over for the whole afternoon and took care of the boys so that Joe could catch a nap and just catch up. I had some wonderful visitors of Caroline Moore and Marian Ashwill...it's nice when people can come up and laugh and pray and love on your child. Caroline even laid in bed with Ella for a while so that I could just get up and stretch...more blessings. My cousin, Katy, came over to our house after Kristie left so that Joe could do bedtime routine and then come up and hang out with Ella and me for a little while. All of this time we are just waiting for her to just be a little more "with it" and start to eat and drink...she didn't drink anything until after 6pm last night...too late to try and get discharged.
Last night Ella and snuggled up again in our hospital bed and caught a few more hours of sleep...like 5 or 6! Today our beloved pediatrician came in and broke us out of jail (we *heart* Dr. Nale). All of our labs came back clear. No UTI, no ear infection...nothing they could find to explain anything.
We're home and recovering. I'm going to bed and getting to sleep the entire night without disruption (thank you sweet Katy for coming back over and taking care of Jonathan tonight) and hopefully our whole family is on the road to recovery.
This was so much harder for so many reasons. I really hate being away from Will and Jonathan for that long. JT is only 3 months old and I know he doesn't understand, but I feel like I'm abandoning him. Will knows I'm gone and misses me and that makes it hard. Ella only wanted me so I needed to take care of my sick baby...and if I'm honest, this was one of her hardest seizures on me. I very rarely let my brain go to the place that says that we could lose her. That all of her medical complications are just scary individually, but combined she is so fragile and it could go from our "normal" to bad very quickly. Joe used to be so afraid that the seizures would cause a heart attack or at least heart damage...I've never felt so afraid as I did during this attack.
I know God is teaching me...I just want to remember to rely totally on Him and trust Him to take care of my child...for we are all HIS children and He loves Ella more than I ever could.
Sunday, October 24, 2010
Monday, September 27, 2010
Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles.
Heaven is the place
Where she calls my name
Says, “Daddy please come play with me for awhile.”
God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m aching for.
God, you know, I just can’t see beyond the door.
So right now...
Heaven is the sound of her breathing deep,
Lying on my chest, falling fast asleep while I sing.
And Heaven is the weight of her in my arms,
Being there to keep her safe from harm while she dreams
And God, I know, it’s all of this and so much more,
But God, You know, that this is what I’m longing for
God, you know, I just can’t see beyond the door.
But in my mind’s eye I can see a place
Where Your glory fills every empty space.
All the cancer is gone,
Every mouth is fed,
And there’s no one left in the orphans’ bed.
Every lonely heart finds their one true love,
And there’s no more goodbye,
And no more not enough,
And there’s no more enemy.
Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone.
Heaven is the place where she takes my hand
And leads me to You,
And we both run into Your arms.
Oh God, I know, it’s so much more than I can dream.
It’s far beyond anything I can conceive.
So God, You know, I’m trusting You until I see
Heaven in the face of my little girl,
Heaven in the face of my little girl.
Monday, August 30, 2010
First, I went out for the first time on Wednesday night (yes 9 days after baby was born...I had cabin fever). We had a leadership meeting at church with some of our close friends and I wanted to go and thought it would be a good challenge to try and get all 3 kids to church...boy was it. I didn't realize till we were all loaded in the car that I might have over-extended myself already. We headed up to the church for our meeting. I guess I'd forgotten that you really are supposed to take it really easy the first week after childbirth, but honestly with kids, who takes it easy? The meeting was great, I felt horrible, but being with friends at church always seems to make life a little better. Shortly after we got home I told Joe (and my mom) that they were correct, I shouldn't have gone...a warm bath and a vicodin and I headed to bed, hoping for some sleep (1 hour at a time). In the morning our sweet Julie watched Ella and Will while Jonathan and I slept in from the lack of sleep during the night. By 10am I was up and at least moving. My wonderful in-laws had come to pick up Will (God is so good to us in ways we aren't even sure of yet) and I took it easy. A great friend, Dori, came over to bring me lunch...and I'm so glad someone was here. Julie had left to take Ella to therapy so it was just JT and myself. Dori and her adorable daughter Hallie came over with Chipotle and we chatted, played with the kids and as we were hanging out I started to really feel horrible. At first I thought it was just being tired, then I started to think it was just that lunch hadn't agreed with me...before Dori left I felt horrible. My back hurt so badly, I felt like I had a belt of cramps all the way around my middle, front and back. I ended up taking my temp (101.6) and started having the shakes really bad. Called my doctor, left a message...called Joe, told him to come home...called doctor back and said I needed to talk to someone and my wonderful OB/GYN got on the phone, talked to me for a minute and told me to come straight to his office...he was afraid I had an infection in my uterus.
So, my MIL came over to watch JT, Julie walked in with Ella and Joe came to get me all within a few minutes. Joe took me straight to Dr. Oliver's office where it was confirmed, I had a major infection. As I lay on the table getting blood drawn the doctor told me that I needed to be admitted to the hospital. I was devastated (backup...5 weeks after Will was born I had an appendicitis and had to have my appendix removed, and it was horrible being away from my kids and not able to breastfeed for days) and I started to cry...he informed me that if I wasn't admitted on IV antibiotics I would most likely be back in the hospital within days in need of an emergency hysterectomy. I'm not sure if Joe and I are planning on having any more kids, but I wanted to make that decision, not have it be made for me. (I know I have friends out there who have HAD to have emergency surgery or have been told that they, for medical reasons, are done having children...I have watched that pain and realized that I needed to do whatever the doctor told me to do.) I was sick, I was delirious and I was freaked out...and I just wanted to feel better.
So, I was admitted (poked in my arm about 20 times, well...it FELT like it) and given two antibiotics, TONS of saline (well, 3 gallons every 24 hours) and a morphine drip. Finally, I was diagnosed with GBS in my uterus and kidneys. After my infection was under control the doctor told me that he considered it life threatening, especially knowing what Ella had gone through only 4 years ago with the same infection. Rarely does GBS effect adults this way, but I'm now part of the small percentage of women effected by this infection.
I'm doing much better now. Jonathan is 3 weeks old and I've been out of the hospital for about 9 days since the infection. I'm still on medications at home and I do get really worn out, but that that could TOTALLY be from the lack of sleep from life with a newborn. I will say, when the doctor asked me to put my chin to my chest, to check for signs of meningitis I freaked, but luckily we escaped without any long term side effects! I went 28 years without ever hearing about GBS, and I could go the rest of my life without anyone I know ever being effected by it again.
Monday, August 09, 2010
Sunday, July 18, 2010
Friday, July 02, 2010
Ella has a seizure disorder. Many will call it "epilepsy" but all that means is "seizure disorder" so we can really call it either way. I'll try to explain a little bit about what we found out from the neurologist today. I have to admit, I don't really understand all of what he said and as Joe and I drove away we started talking and realized that we have a ton more questions, but for now, these are the answers we received.
- Ella's seizures are a cause of the brain damage done at birth and could have surfaced more recently because of new brain growth (the good kind) and an interaction with the present scar tissue and open pathways.
- They have always occurred when Ella is sleeping and I learned (Joe already knew) that your brain is more active when it's asleep than when it's awake, so the constant movement on her raw pathways in her brain could trigger a seizure.
- Why doesn't the medicine stop the seizures? It might just be lowering the number that she has. They can't prove that Ella would have more, or less, seizures off the meds, but we aren't willing to risk it either. The thought is that off the medication the seizures could be more frequent and more intense, so for now we just monitor the levels of medication and how her body processes that medication.
- Exhaustion may play a role in Ella's seizure activity. We can't prove how long the exhaustion has to occur to lower her threshold for seizures, but we are going to try and be more proactive to prevent exhaustion, but not to completely decrease her involvement level in life...that's a rough balance for us because there are no clear cut lines on what level wears her out and causes her brain to react. This will have to be a prayer request that Joe and I will agree and feel a peace about the activities we elect for Ella to be involved in...both for her benefit and for her therapy.
That's all I can remember, but I'll have to see if I missed anything from Joe.
Monday, June 28, 2010
She's the biggest trooper I've ever seen. She gets poked and prodded and tested and poked more and the child seems to come away unscathed...amazing.
- The Kramers came in town and played with us. I know they came in for a wedding, but it was nice to have some good friends visit (since they had just moved 6 weeks before to Atlanta).
- We've had a lot of doctors appointments for Baby #3, his name will be Jonathan Thomas Mitchell and is due August 27th. We'll find out next Tuesday, July 6th (which is also my 32nd birthday) what day we are going to plan to induce. In case you are wondering, we induce to make sure and get the antibiotics to prevent the same infection that Ella contracted at birth.
- We found out that our dear friends, The Poages, have gotten accepted to Oxford School of Business just north of London and will be headed "across the pond" sometime in September...bittersweet because it's wonderful for them, but so sad for those of us here.
- Our church, First Baptist Dallas, announced that they raised enough funds ($115 million) to erect an updated Education Building and new Sanctuary...this was something that our family prayed about for a long time so it was a huge blessing to be part of the celebration. We can't wait for the official groundbreaking in two weeks!!
- Ella "graduated" her first year of PPCD at school and loved her field day (note the Popsicle, which she enjoyed very much!)
- Joe and I got to celebrate the 30th birthday of our friend, Allison Aars, and loved getting dressed up and commemorate a wonderful woman.
- We discovered that Ella has a severe allergy to peanuts and a skin allergy to strawberries, both of which caused us to change her diet...and we find it changing out own diets. We now have added an EpiPen to our list of meds we carry around with us.
- Thanks to some wonderful family friends we got a lift installed in the back of our minivan so that I can easily get Ella's wheelchair in and out of the car...it's been a huge blessing and I'll post pictures at some point.
- Oh, and I fainted while shopping at Sam's. It all goes back to the Strawberry PopTart I had for breakfast that morning and my doctor has since laughed at me. Nothing to worry about, just an increase in protein each day.
- For Memorial Day we went to the Arboretum (sorry, only one picture of Ella in a hat before the battery died) and then swam at the house: