2013/12/04

Tuesday update.. Oh wait it's Wednesday.

Jem is doing better by the day. In fact there's a possibility of release this week. The physicians had discussed release tonight but upon listening to her swallow and the subsequent coughing and choking that ensued the Doctors decided she should be watched for another day at least. Because of this choking there's a risk of Aspiration Pneumonia. This is a common side effect of infantile botulism. I'm finding the days are running together. The solitude is odd and I am keenly aware of a 9 person shaped hole in my heart. I'm thankful it's filled every day by my 8 beautiful children at home and my best friend! I know the dear ones at home miss me too. It will be so immensely pleasing to me to be reunited with them all again. My heart swells as I type about it. We all have so very much to be thankful about. I see it as a great mercy of The Lord to be reminded of that fact. Hope to update again soon.

2013/12/01

Jemimah's Botulism

What started as a long night up with a restless baby ended with an even longer week of watching my baby become paralyzed before my eyes. To see your flesh and blood become the victim of a life taking disease is beyond my ability to express in words. I will give a timeline trying to explain all the details from my mind and my heart.

Saturday November 23- Jem was up frequently through the night. I thought she might be teething.

Sunday November 24- I sleep in and skip Sunday school because of the long night before. When it's time to get ready for church, Jem has an unusual 30 minutes of painful crying. She must be teething. I consider skipping church altogether but think better of it and hand Jem to a daughter to be bounced a bit while I take a shower. Jemimah ends up sleeping through the ride to church and the entire sermon. Odd. We go home and eat a nice meal while baby girl sleeps again. She spent much of Sunday sleeping. She didn't nurse much. I'm starting to suspect she's ill not just merely teething.

Monday November 25- This was a difficult day to get out of bed. Jemimah didn't get a good nights sleep, therefore I didn't either. I'm tender to the chest because she just isn't nursing. By the evening she was so irritable and generally lethargic. I Checked her temperature and no fever. Before bed I tell myself that if sweet thing isn't better in the morning that I will call Doc Callahan.

Tuesday November 26- I awake and am worried for Mimah Bean. I check on her and she is definitely lethargic. I get dressed and ring the doc as soon as she's open. Give another temperature check and still no fever. Yet the lethargy has me alarmed. Within 5 minutes of scheduling the appt with the Docs receptionist, the Doc calls me. Directly. I go over the symptoms which include, not nursing, lethargy, and no fever. I'm told to go straight to the ER. At this point I could feel the shakes creeping through my bones. I had a fear that the day wouldn't end as I was hoping. Jake had been out of town for a few days so he could train. So, I leave kids in charge of the day. It's thanksgiving week so no school or big responsibilities. Colby and Jackie are glad I'm taking her in. They'd also seen her decline and my concern. 
    At the ER I'm brought back quickly, the doc had called ahead for me. I'm asked by a couple of people if she's my first. They hint that I have 'new mommy syndrome'. The doctor examines her and they run some tests including a urine sample. The sample reveals low blood sugar and ketones. The doctor is alarmed and rings the pediatrician who's on call for the day. The pediatrician enters the scene and notes that Jemimah is dehydrated. Well yes, of course she is dehydrated she hasn't eaten. They start an IV and get some fluids in her. I'm left alone with her for a bit. The doctor comes back and talks about admitting her so we can run some more tests. It's decided that the hospital in Fredericksburg isn't comfortable with her illness. Because of the ketones in her urine they are thinking she needs to be seen by genetic specialists. We jump through the transfer hoops and 4 hours later we are transferred north to the National Childrens Hospital in D.C.
   Upon our arrival she's given a big IV push to help with her dehydration. I'm asked again if this is my first. What frustrates me about this is the likelihood of new moms being turned away for the care their baby needs all in the name of 'new mommy syndrome.' What if I'd have said, yes? Botulism puts most infants on a respirator within the first week of exposure. I'm thankful for that feeling that something isn't right and I'm glad I've had enough children to know when to push and persist with doctors. So, Jem had an evening of IV fluids and a lot of suctioning. I was still trying to nurse her, but she just wouldn't latch on. It was as though she had forgotten how to nurse. It was a terrible feeling that was taking over me. I'd never heard of a two month old who wouldn't nurse. By the next morning I was having many visits from various doctors and med students. There was excitement in the air from them. I was growing more frightened. More blood was taken and various tests done. A CT scan was performed and some mild swelling of the brain was shown. We were then moved to the Pediatric Intensive Care Unit. At this point spinal tap is becoming a common theme, but because of the perceived swelling of the brain there could be risk of a 'vacuum' scenario where the brain could be forced downward and cause trauma or if there was too much fluid in the brain we could cause a leak from the puncture site. The next step is MRI. This showed what could be swelling or normality. In short, it was determined that the spinal tap would be safe as there was none to minimal swelling. The test needed to wait until the head of radiology confirmed the MRI reading. It was midnight so we waited until morning.

Wednesday November 27- This day proved to be challenging. Having your baby deteriorate before your eyes and grow into some queer paralysis was numbing. I was no longer allowed to try to feed her nor hold her. At this point she was sleeping and being tested for everything under the sun, except botulism, we needed a poo culture for that. She was prepped for her lumbar puncture and I headed for the showers. I came back to the room as the team was finishing her procedure. I saw her precious spinal fluid in delicate glass containers. The team was pleased that it was crystal clear. It was clear like water. I've never seen fluid from the body be so clear. This was a good indicator that there was no meningitis nor encephalitis. It was sent off to the lab.

Thursday November 28- We are waiting on test results and more urine and blood is drawn. Jemimah couldn't move her bowels. As a matter of fact she couldn't move at all. She deteriorated quickly that day. Her face grew flat and she was altogether a child I didn't recognize. Were it not for her name band I wouldn't know she was mine. My heart was heavy yet Somehow filled with an insurmountable thanks. Jake and I decided it would be best if he was with the kids and celebrate Thanksgiving without us. I stood by Jem's bed and watched her sleep. I was so thankful to spend the day with her. I thought that it may be the last Thursday with her. I felt privileged to be her mommy. I kissed her more times than I could count. I think she kept a moist place on her forehead for the day. After lunch Jake arrived and we started reading about botulism. We became increasingly concerned. It was as though we were reading about Jemimah. No fever, inability to nurse, floppy limbs, unable to hold her head up, constipated, dehydrated, she was not on a respirator. That was the only difference. Botulism could come from rivers.. We live near the rappahanock, construction sites.. We'd just had a fence put in and broke ground for a shed, honey ingestion.. We don't feed her honey, but we buy it by the gallon, and I drink it in my tea everyday. It was becoming apparent that she could really have this disease. The treatment was in California, it costs $50,000 it is only released through the authority of the state, we needed a stool sample! All of her previous tests came back perfect. We both slept not peacefully, he at home with our babies and me here with our Jem. We were both praying for the doctors to order the antidote to this disease on good faith. We were sure she was contaminated with the disease and was toxic. It was all too clear. The Doctors would be rounding in the morning I would plead our cause then.

Friday November 29- I had fallen asleep off and on through the night. 20 minutes here and there. Jemimah kept choking on her sputum. It was scary to wake up and hear her choking. I'd suction her little mouth and grab the nurse to tube suck her nose. I slept some more and then morning had come. 0530 brought the first doctor to look at her for the day. I stirred and slipped out of the recliner. Jem looked worse. How could it be possible? I was weepy. I'd told myself not to cry in front do the medical team. I needed to hold it together and communicate without a box of tissues. This effort failed as I looked at her. I told the neurologist I was convinced it was botulism. Somehow, somewhere, one toxic spore made its way to her gut. The Dr. assured me she would be okay. He said he would help her. It was time for the morning round in a couple of hours. Her team rounded outside the glass doors of her sick room. They agreed it was time to order the Baby BIG. This is the name of the medicine to treat her. We needed permission from the case workers at the hospital and the state lab in California had to approve its release. There's a short shelf life for the drug and because only 90 infants under the age of 1 will have botulism per year it's not handed out like Motrin. Big would be overnighted for Jemimah. Friday we watched and prayed and put it out there on the social networks for all of our Christ bearing friends to pray for her. I hoped and prayed she would make it through the day without being intubated. Jakes mom, Teresa, arrived to come help with increasing responsibilities at home. Praise God for her timing! We got the word that the drug was to arrive midnight. I was given updates where BIG was. It was in a van on a highway In California. It had missed the plane! The doctor was mad. It would make the next plane and arrive at 0230. It missed that one too.

Saturday November 30- BIG finally makes it to Dulles airport at 0830. By 0900 BIG was in the lab being reconstituted. I lay down next to Jem in my recliner. I consider how dangerous this life is we are all living and how I have no control over any of it! This frightens me and then assures me. I don't want the controls. I'm pleased God has them. I awoke an hour later as the nurse came in. She told me she had the BIG and She would administer it shortly. The nurses punched numbers and set up the first 15 minute interval. Jem was given Tylenol and Benadryl in case she were to have a reaction. The Big went in her veins, she cried because it burned. We wrapped a warm compress around the IV site. She took the first 15 minute interval well. The remaining BIG was administered. Everyone left the room. It was Jem and I. Jake soon arrived from home. He had to fly out for his last two weeks of training. He had tried to delay, and was told he could. However, he wouldn't be payed and all training to this point would be repeated. We prayed over our baby, kissed each other and away he went. It was a quiet and uneventful day.

Sunday December 1- Advent season begins. Jemimah is awake and looking around. She is very alert. She is smiling. Her eyelids are open all the way. The neurologist and I both agree she is improving. A few hours later she is pulled close and I am able to nurse her a bit. She still doesn't have her ability swallow back. But she can cough! She's working some mucus up and out to her mouth. I'm seeing a miracle unfold before my eyes. The last thing to return will be her reflexes. She's still unresponsive when we tap her knees. The neurologist assures me this is the last thing to return. Those nerves must mend and rebuild. We should be getting her botulism test results back in several days. It could take longer because all botulism labs are tested by disease control on a state level. We will be here for several days more under the watchful eye of several excellent doctors, disease specialists and nurses.

2013/09/08

Contest Winner....

Jessica Growden won my blog contest. She guessed girl, 7 days late, and weighing in at 8 pound 5 ounces. Her guess of girl and 7 days late was the only guess to achieve 2 out of 3 without missing the sex. Great job, Jess! It will be a couple of weeks before I finish the prize for you. Email your mailing address to me when you're able. Thanks everyone for playing.

2013/09/04

Jemimah Norma Stiles Reynolds

In the fullness of this pregnancy it seemed as though our little package wasn't going to arrive in our preset timeframe. We worked hard to instigate labor. Through laughter, walking, squatting, hiking the stairs 2 steps at a time, chasing kids, hard working around the house, etc., etc. our little bundle wouldn't budge. A scheduled induction found its place on the family calendar. Don't worry, this was after the guessing game was posted.  Jake has to be back to work next week, so in order to have the few days of downtime required for a new mom to recover we decided to give our bundle a week post date. We had to pass a fancy ultrasound test for labor and delivery to permit the pregnancy to go through the long weekend. That test was Friday. As it turns out my fluids were low but all else was perfect with the baby. We spent most of the day Friday deciphering this. So It goes with my post date pregnancy. Drama! Oh yes, then there's the abscessed tooth that reared its painful head Friday morning. Very funny timing to occur on Labor Day weekend. Jake contacted two ERs and two dentists. Nobody takes care of teeth on Labor Day weekend. Ouch. I was less than pleased at the thought of labor and delivery along with an abscessing tooth.

So, we coasted through the weekend. Nothing happened. Go figure. We had many people praying for us and particularly for the baby to arrive before the Tuesday induction. This didn't happen. I spent a couple of evenings crying as I brushed my teeth. Don't pity me. It's called a lack of faith and discontentment with Gods will. I knew it, but man, pity parties are fun when you seemingly have something to cry about.

 I had a rough evening Monday. Jake encouraged me and told me if I was still checked about the induction we could cancel. I woke Tuesday with a peace and calm shaken up with a shot of courage. We called labor and delivery. There was room for us at the inn. We checked in. Got my antibiotics going thanks to my GBS positive result. This turned out being such a blessing. The antibiotics had a two fold effect. They knocked out the risk of our baby being exposed to the positive result and after the third bag my abscess tooth was numb. Just enough to trick my dying nerves. We checked into our huge delivery room. The midwife came in at 7:30. She easily broke my bag of waters and we were now on the clock. She would give us until evening before introducing a chemical. We paced the halls and watched the L&D floor fill up. It filled up so much so that scheduled c-sections and other inductions were turned away. 15 babies were born. We were marveling at The Lords timing of having us arrive that early am. Had we come later we would have also been turned away.

In the early afternoon Jake read our daily lectionary to me and we prayed asking God to let this labor start. I kid you not, while he was praying I had a nice contraction. Not nice as in friendly but as in ouch. It took several minutes and another came. By 2:30 I started getting a bit more regular.. Every 5-8 minutes. By 3:00 we were up to 3-5 minutes. It's fascinating watching ones labor progress. The ebb and flow is much like watching waves roll onto a beach. By 3:15 I was in pain and was so thankful knowing I was going to make the deadline and wouldn't need any chemicals to get my labor going. We had a friend from church bring Jackie. She had asked to see the baby come into life. She arrived at 3:45. By this time things were serious and the midwife was just arriving. Thankfully Jake was there to articulate to the nurse that even though I was only dilated to a 4, the time being 3:30, the rest was going to go fast. He says its something with the way I breathe. He had the nurse check me 5 minutes later and I was to a 6. So, once Jackie arrived I had hit my transition. We told her she could leave the room if she got scared. After all, we want grandchildren.. She wasn't afraid and stood at the head of the bed near Jake. At 4:17 Jemimah arrived. We chuckled in surprise, a girl! I guess deep down we both thought boy. How delightful to be wrong in our instincts. In more ways than one...The induction was amazing... Our midwife was superb.... The antibiotics relieved my tooth... The baby came sweetly and quietly into a huge room bright with the light of day.... Our eldest daughter saw a child enter into life; new and fresh.... I didn't hemorrhage.... We were well looked after and some folks recognized us from 2 years ago.... This made recovery all the sweeter. Yes, an unexpectedly, awesome day despite my fears.

Jemimah weighed in at 8 lbs 14 oz. She's 19 inches long. She has black hair. We are so humbled by our Gods mercies to us. We are rejoicing over His intricate weaving of a new life.. Just for us and just for Him. What a gift. Life.

2013/08/17

Getting there.

I'm so pleased to be so close to the end of the pregnancy. I'm feeling very full of extra life and joy and a wee bit of exhaustion. I'm very confused about who is coming, whether a son or daughter. There are days I'm convinced it's a boy and there are days I'm convinced it's a girl.. My due date is the 27th of this month and as usual I find myself playing games with my mind that I will go early. After all its been so busy and truly nonstop that maybe my body will just labor early because its so tired.. Then I game around with myself and think no way, I'll be induced again..

Jake has given Colby practice drives to the hospital just in case I start labor and he's not here to take me.. Poor Colby, I really hope that's not the case.

I was thinking we'd play another game and try guessing the gender, the birthdate and the weight of the baby. Just like last time if you guess the wrong gender it's an automatic DQ! Below are the previous stats to help in your guessing. Leave guesses in the comment box below. Not on FB. :)


Colby - 3 days late 7 lbs 3 oz.
Jackie - 2 days late 8 lbs 10 oz.
Benjamin - 12 days late 8 lbs 14 oz.
Louisa - 9 days late 9 lbs 4 oz.
Libby - 1 day late 7 lbs 8 oz.
Silas - 10 days late 8 lbs 8 oz.
Samuel - 15 days late 9 lbs 12 oz.
Hazel - 11 days late 8 lbs 13 oz.

Happy guessing. There will be a prize for the winner. Not so sure what it will be yet.. But it may have something to do with pentagons. 

Love to you all. Please pray for me. I still get scared about this whole birthing thing and the last time was a doozy. 

2013/08/09

What's really going on...

The last week has been a whirlwind! We moved out of 4500 square feet and 4 acres to 2500 square feet and 1/16 of an acre. After a few trips to the dump, a few trips with a u-haul, one load of firewood, 12 saints scrubbing our old house and serving our family with their labors and backs. We can say that we are 95% moved in! We need only build a shed for Jake's Garage and our numerous bikes and then organize the basement. 

We closed on the house today and came away with a gift card and money. Super duper thankful. 

So, why all the hubbub? Why all the change, why the prayers and late nights? Why the sometimes anxious hearts? Why the raising of our voices in song and frustration??? 

It is because my beloved, my Marine, my hero, my life partner, my best friend, my Jacob is retiring next month! We are saying good bye to the Marine Corps. We are nervous and hopeful for the future. We are pleased with how God has tremendously provided for our family in the past and trust His mighty provision for the future. Jake will be taking a job with Air Wisconsin, building his pilot hour currency and from there we will see which major airline God leads us to.

Please pray for us during this time of transition. Please pray for our baby who is due in 2 and 1/2 weeks. Thank you all so much! 


2013/06/28

The Final Dregs

It blows my mind how quickly my mind defeats me! Moving has got to be one of the tougher things in this crazy life. Not toughest, I'd put childbirth, losing someone you love, and fighting with a family member on the toughest list. Back to moving. We strive to find a home, finally land in one, get our stuff unpacked. Put 100 holes in the wall to display all the pictures that'll make it seem homey. We arrange and rearrange the furniture. We fill the fridge and pantry with the essentials. Flare up the oven and bake a familiar dish.  Then somewhere between week 4 and 10 the house is finally feeling like home.

It's so nice to be home. Isn't it?

But then, it's time to move. Again. I just happen to be pregnant again. Well, I'm frequently pregnant, but I happen to be largely pregnant and in my 3rd trimester again. This would be round 3 of this late pregnancy moving business. Oh yes, big, hot, round, freckled and hairy. Add those to the woes. Trying to take everything down from the walls, filling the holes with spackle, cursing myself for ever having put a thing up on the walls to begin with. Sanding the spackling, re-spackling, sanding. Digging through the dark places of the rental to find the paint that you're praying the owners have on hand. Finding the paint, applying it. Then digging up the glaze because one coat of one color just isn't enough. The glaze is all but gone. Get Acetone from the pedicure box and add a half a cap hoping this will dilute the thick sticky glaze into something workable. Crud! The paint doesn't look right. In fact it looks terrible!! That's because you've picked the wrong base color. Dig some more, despair a little, get rescued by a blonde haired, freckle faced, girl who happens to pick up the 15 gallon bucket and find the right base shade. Thank you Lord! Repaint, take a nap. Ahhhhhhh. Time to get that forsaken glaze back out and add another half cap of acetone. We are in business. Stop cursing yourself for putting holes in the wall. It's okay now. It's okay. It's ok.

Now for the game room downstairs. Where the kids ate pizza on Friday nights and occasionally smeared things on the wall. Gonna have to take down the posters, pennants, pictures, and puzzles. It'll be okay soon. It'll be okay. It will be ok!