Another Hospital Trip: Penelope's Log

Penelope's Hospital Stay Log - pieced together from Facebook posts and a log I kept to record our experience with hip sepsis in our 6 year old daughter. Hopefully this is correct and pieced together okay, because my kids are going crazy and I d not have time to check it all that well today! I've been trying to post this for dayyys!

Day 1 Emergency Room Trip/ Surgery Right Away
2/13/13
I'm online at the hospital now so I can give frequent updates on FB now (and blogging). Family that has been calling us: You can certainty still call us, but I'll post a bunch so you can all stay in the loop here.

4pm on 2/12/13 Penelope's severe hip pain started all over again and she could not walk and was crying/screaming out in pain when touched. We brought her back to the hospital at noon on 2/13/13 to see orthopedic specialists. (I politely demanded to see orthopedics and wouldn't let anyone else examine her, because 2 weeks ago the ER was super unhelpful.) Fluid was drawn from her hip and she has a bacterial hip infection. The fluid is being cultured to see how bad/what it actually is.

Penelope had surgery at about 5:30pm 2/13/13 to clean her hip joint and have a drain tube put it. We are really doing pretty well for having our first serious kid hospital experience. Thank God Ricky made it time to the hospital to see us both.

Day 2 Recovery
2/14/13
Ricky needed to go into work. Penelope is doing well recovering and is "ok." She doesn't want to move and is very scared of the pain. She hates pain more than the average kid or person. Her physical therapist just go her out of bed (she screamed which I expected) and placed her into a kid sized wheel chair. We went down to the playroom and did some crafts. We brought more crafts back to the hospital room. She warms up and gets talkative for a while and then, and as to be expected she gets cranky for a bit too.

She needs to stay here for 3-5 days. We will be sent home with iv antibiotics for 3-4 weeks and we will get an in home nurse visits. (At least that's what they think our treatment plan is.) Depending on how she does she may need a walker at home. It look like her drain tube will get to be taken out tomorrow. She is on low dose morphine today.Family and friends that have already called and left messages thanks so much. I get teary from all the support and outpouring of love!

Fun things for Penelope: She lost her first tooth! And she just discovered how to move her own wheelchair, which she really is enjoying. She refuses to move at all so getting her active even if only in the wheel chair is a huge step! Getting her up to go pee is horrible and painful because we have to lift her, and she cries for her Daddy.

They actually pulled it out right before surgery while she was under because it was too loose to risk it falling out during surgery. I didn't want her "robbed" of her first tooth lose experience (it's ALL she talked about) so I never told her. When she discovered it missing I helped her look in her hospital bed for it until she "found it." She thinks it fell out in her sleep, which is mostly truth. :)

We were given a tooth necklace from the hospital we never showed her and saved. In it is a note from the Tooth Fairy that I wrote. "Penelope, be brave. This is for good luck. You will be better soon." She will take this with her for some more procedures today that will be hard but hopefully with Daddy here and a good luck charm she will feel better.

How I'm fairing at the hospital: It's hard seeing Penelope like this and it's stressing me out. I'm not too badly stressed though because I don't have a horrible headache -usually I would have one. But let me tell you: this pregnant mama is not going hungry. I'm eating all Penelope's leftover food we order (which is a good amount!) + my own food and snacks + any smoothies or juice she doesn't finish (she prefers water over most things). It's like I'm at an all day buffet. I also had 2 donuts (chocolate bars!) today. lol. I usually can't eat when I'm upset so I guess I'm not too upset! I am stressed though. Not sure if I normally eat when I'm stressed....but definitely eat when I'm sitting around with food near me and pregnant! 


2pm
I'm so ready for a break from some medical procedures. I'm so ready for Ricky to help with her tomorrow, because her being upset and in pain wears on me. I hate this and it's hard. If things were really horrible or she wasn't "okay" he'd be here, but he really needed to attend some meetings and conference calls today. 
4pm
Poor Ricky has tons of stuff going wrong at work and his computer crashed yet AGAIN today and it was after the tech people were closed. So now he has to go back to work in the morning to get the computer to them.
 6pm VALENTINE'S at The Hospital...
Ricky brought a Valentine's dinner to the hospital to surprise me. I was all teary! He still tried to make our evening special. We always have soft cheese, bread, and other "fancy" things for the two of us if we don't go out on V-day. Yes, I totally eat sushi, soft cheese and shrimp while pregnant. He brought sparking cider and joked that he should have gone all out and brought me champagne. LOL! The cider was SO GOOD! 

Penelope told us she'd take a picture of us, how sweet is that! Tired but in love hospital parents of EIGHT kids :) Happy Valentine's Day~ Everything is tolerable when I'm married to this man.

 

Day 3 Rough Morning! Rough Day, happy progress eventually!
2/15/13
1pm-
 Really rough morning, but things are looking better now. We had two more procedures this morning that required fasting for sedation. Ricky decided that going into work to get his computer into the tech guy was not an option and that we really need him and he wanted to be with us. The hospital was running late so that didn't help things. I was relieved to not have to deal with her crying and pain alone. Seeing the sad concerned look on Ricky's face made me feel so much less alone. When we had to leave the room for the procedures our eyes welled up a bit.

She was heavily sedated so even though it was totally traumatic getting ready for it and waking up she didn't actually feel it and doesn't remember anything. Now her hip drain tube is out and her picc line is in. Picc line is a catheter in a major vein, inserted into her upper arm, and it ends right outside her heart and delivers her med(s). It replaces the hand iv totally. It's totally creepy sounding but it is a long term iv we need her to have for various reasons. Some risks are involved but nothing we have to be too freaked out about right now. A home health aid will come to our home and monitor it and teach us how to give her medicine through it.

Coming out of sedation she was freaking out crying a bunch and dizzy, but I was able to talk her down to relax. She was angry and sad and still refusing to walk. She seemed to be in a lot of pain. After the procedures we headed back to our room. Seeing the other children here is seriously just as hard on me as seeing my own. A baby was screaming and having some produce done as we walked by and I started holding back tears. I think everything has really started wearing on me today. I feel like I'm going to bawl any moment. Penelope started crying out "Mama" and "Dada" yesterday during pain, fear and other hard times and it was heartbreaking to hear that. We noticed some regression after her 24 hour hospital stay 3 weeks ago (night waking, crying, acting younger again/talking whiny) so we are expecting some more similar situations and rough times to come up during and after this ordeal.

Anyway...We got Penelope back into bed to drink slowly and start eating slowly so as not to make her sick. After we were sure she wouldn't be sick she ate a ton for lunch and drank a ton of tasty lemonade. Now she is HAPPY!! And moving easier! She cried only a tiny bit when we had to put her on the potty then after settling into her wheelchair she started moving around in the chair and putting pressure on both feet. She is starting to make movements without knowing it. We explained to her that she needs to learn how to move herself and what works for he and she'll feel a lot more comfortable instead of her just flat out refusing to move and us having to move her. 

5pm- We met with the infectious disease people and nothing has grown from the culture, which isn't terribly uncommon unfortunately. So we may not know what kind of infection/bacteria she had. That is frustrating. They have to treat it as bacterial because of blood counts and it meets all criteria. It's super interesting learning about the testing processes and our infections disease doc likes to tell us all kinds of super technical info in ways that we understand it. She's great and we are super interested in the whole thing. They are very hopeful something might grow still. Of course I wonder "what if" she didn't need this aggressive of treatment but they have many, many good answers to that question (plus I have the internet at my finger tips to tell me it was necessary!) We also found out that there is no concern of bone infection anymore. There is no way to be sure without an MRI but there is no reason to put her through that and her antibiotic regimen should take care of everything anyway. Her bone is not soft like it would be on the end if the infection spread into it (the surgeon checked while she was opened up! uck! My poor baby!) They said something about us going home MONDAY??? NOOOOooooooo Please be it Sat or Sun PLEASE....

I was suppose to go home last night and didn't, so tonight I get out of here now and leave for a while.

Day 4 I needed that break! Home for bath and break  for me!
2/16/13
So, last night I went home alone for a break and to see the animals at home and I found the most gorgeous pink and purple flower bouquet in my car.

I cried just about all the way home; for love, for happiness, for gratefulness, for stress and for release. What a beautiful life. I enjoyed being back in the world. I had no idea how much being cooped up in the hospital wears on you. The cold air on my face outside felt good. I felt hung over with a slight headache and I was a bit dizzy.

Ricky stayed at the hospital with Penelope and she made some awesome improvements while I was away for a few hours. Physical therapy came by and made her take a step. It's like seeing your child take a step for the first time all over again. She was absolutely terrified over the past few days and said she'd never be able to walk again. To see her smile and try to move around without tears...Ricky and I just rejoice. (she is still not walking, but she took some steps and is ding some things on her own) It's been a hard few days and things are so much better today. 

Oh my goodness! They just came in while I was writing this and said we get to go home today!!!!! YAY!!!

Penelope standing for the second time alone! This change in her progress (moving a little more and her not needing pain meds) and our attentiveness and self sufficiency to care for her the entire time (nurses even said so) in the hospital lead them to release us 1-2 days early. We rock!!

 
1:30 pm Home
Settled in, happy, relaxed, relieved. Waiting for home health nurse to bring her meds and give us instructions. 
4pm This is everything we need for her noon meds! It's a lot of steps!!!! We were totally overwhelmed at first, but it's going really well. She gets 1 med at 6am, 2 meds at noon, 1 med at 6pm and 1 med at midnight. We need almost this much stuff every time. The red capped syringes are the meds, the white capped ones saline, the blue cap heparin.
 

This is the schedule and things we need for each time we administer her medicines. We use this chart to help us for the next 3 weeks, unless something changes when they check her blood work each week. Ricky made this spreadsheet for us. He is awesome! xoxo

 

Day 5 Monday 2/ 17/ 13
You've got to be kidding me...
After a really happy day full of progress on Sunday it was super disappointing and a little scary to spend 5 hours back at the hospital again on Monday. Penelope is/was in debilitating pain on the other side now (leg and knee). She endured several more exams and another x ray and sonogram. We met with orthopedic, rheumatology, and infectious disease doctors. They can't find anything else wrong so far and stand by the antibiotics she's on. Her blood work today came back looking very good, too. She ended up walking around A LOT on Sunday and all on her own so we wonder if she just over did it. She's an extremely sensitive child and the way she acts like everything is the worst pain EVER is wearing thin on us. We are SO thankful to be back home again. It's all still a bit concerning though. And exhausting!!!

Her surgical dressing (left hip) came off today and all looks good with that. It's beautifully sutured and looks like it's healing marvelously. It does not hurt her but is tender. Everett kisses her and tells her to get better. It's SO sweet. We all can't wait for our version of normal to be back. It's been a rough few months and even rougher past few days.

I was so upset and holding back tears to have to leave Everett to go to the hospital again, esp. not knowing if I'd make it home again anytime soon. Charlotte (16yrs) sent me text messages and photos of him happy, and of her doing a science kit with him to make me feel better and to show me he wasn't upset. What an angel she is. I love you Charlotte, thank you times a million for being the best sister ever to your siblings and daughter to us! xoxo

Upon my return Everett (2.5yrs) was a little grouchy about me leaving him. When I got home he looked at me cross and said, "Hop-tail." (hospital) Then he wrapped his arms around me and kissed me. He has no idea what the hospital is, but he knows I keep leaving him behind.

Antibiotic regimen 4 x a day is a lot of prep work but we are doing it! While we fall behind in other areas of life, like school and routine, I am reminded that we make it up with interested kids who are learning about: medicine, human physiology, health care careers, and last but not least pulling together as a family.

Home 2/21/13
Things are much better and she's feeling much better. We have started to get back to normal, the little boys are crazy, we are all happy to be together and Penelope is walking! Her meds are going well despite a rigid regimen. I have an outpouring of love and comments from a "Love Bomb! Thank you visitors!!! How incredibly sweet and uplifting!! Thanks so very much Sara!

Baby Eight... memories and thoughts about our growing family

A New Baby is Coming!

As Everett moved from babyhood to toddler-hood we felt more and more like babies were really and truly ending for us. We felt this way with Sebastian too though...But...  -and there is always a "but" when you use natural family planning- we welcome this new baby into our hearts and home and we feel blessed and thankful for him or her. Having many, many, many children to us is just a part of our life and we embrace each baby as a gift and blessing.

The kids are completely excited and we are ready for another newborn. (We just don't think about the money, new car seats, bigger cars, teething, toddler hood meltdowns, temper tantrums, homeschooling, braces, and sleepless nights! ; ) We live in a bubble of bliss… New baby? No problem. We’ll fit the kiddo in somewhere. This is the basic attitude of big families. A lot can be solved with more bunk beds, faith, and love. Many don’t understand it, but those with big families I know seem too. 

Finding Out 
 I was afraid I'd have the morning sickness and fatigue I had with Everett.  I didn't end up that miserable thank goodness, but I was extremely whiny about the morning sickness for a little while because I just flat out gave into it. At that time I also had homeschool and toddler burn out and I just didn't feel like dealing with the added unhappiness of morning sickness. Ricky's positive and loving attitude helped so much. I didn't want to tell anyone about the baby right away because I didn't want to seem unexcited just because I didn't feel good. The news started coming out the week of Christmas but there's a lot of people that still don't know.

One night I was exhausted and ready to fall asleep. I crawled into bed and let myself sink into comfortableness. I tried to let the calm wash over me. Then I blurted out loudly, "How can this happen!? How does this happen to us??" Ricky smiled at me and scooped me up with both of his arms like a baby and said, "Well, when a mommy and daddy love each other very, very much..." I laughed at his sweetness and sense of humor. The look in his eyes was so seriously loving and wise. He effortlessly accepts our life together and the craziness it brings. I absolutely love being married to him. I love how much he loves babies. With his hand to my belly he told me that I need to hurry up and 'get fatter' so he has a baby-belly to rub. If I am nervous or have doubts -I just about ALWAYS do the first three months- about having another baby or what the future could bring he always knows what to say. I want to always remember the sincerity and love in his eyes for me and our babies/kids. He has so much faith and trust. It always helps me get through the hectic morning sickness days. The look in his eyes gives me the warmest feeling. Our life will get richer with laughter and happiness even if we get poorer in our finances and deafer from children yelling, running, playing and climbing up the walls. Whatever love and happiness and hardship and stress we will have in the months and years to come we will continue do what we've always done. I always feel like we don't know what we are getting ourselves into, but it's always okay. 

June!
We are glad to have broken the fall baby streak! We have a lot of birthdays in the fall months:  two August children, two in September and one in October. The youngest kids ask constantly about this spring/summer and the baby. Everyone in the house seems to be talking about this June. Even at the dentist's office yesterday Sebastian asks me, "Mom how long until June again?" This baby has already stolen our hearts and brought meaning and joy to all of our lives. I feel like having a party when the baby is born, the kids can make and hang decorations, balloons, party poppers and a cake. I'll let them wrap some clothes, cloth diapers and baby blankets up. It will keep them busy. I think I'll have a tub of supplies ready for them for them and they can do it the day -or the week- the baby is born. Something fun they can do and plan all on their own.

Family is the essence that helps define our identity

Over the past five months I have reflected on and realized what a huge family we have created and how layers upon layers of family have started because of us. We get caught up with life, work, money and chores but don't always stop to think about what we have created as the result of our calling to have a giant family. I got to thinking about siblings, cousins, aunts, uncles, grandparents...I got to thinking about when I was growing up and how I thought I had a big family (my parents are each one of four children and my dad remarried and had 5 children total (I'm the oldest of the five). Growing up I did have a big family, the biggest of anyone I knew. We had: big holidays, big picnics, big family turnouts at school plays/sports, big weddings, big Easter egg hunts, packed BBQ's. I grew up with a nice large group of brothers and sisters; someone to always love, annoy, and play with. I grew up with a handful of cousins, too. My entire extended family even likes loves to vacation together.

This realization did make me really sad though because I live 1500 miles away from most of these people, including every one of my siblings and parents. I wish we were shuffling our eight kids to family gatherings taking up lots of space and sharing good times, hard times, and love with everyone.  My sadness was filled with joy too though because even though I'm far away and wish I had my large family near us, our kids still have each other. They are growing up with a large family foundation, siblings and playmates. We do have family here too (his and mine) and that is special and wonderful in many ways but we still live a couple or few hours away from them and miss seeing them. When I think about all this I can't help but to imagine what our family will bloom into when our kids have kids, and their kids have kids. We have created a potentially monster size family that will grow into generations of love, morals and togetherness --if we did our job correctly.

The way we followed our hearts and beliefs as we were lead to have eight children is still somewhat surreal to us since we live in a society that thinks it's weird. However the enormous amount of congrats and support we receive is amazing, and from what I hear from other large families pretty unheard of. The majority of people we know care about us, believe in us, and respect us. It's truly a blessing and it means SO, so much to me. I hear from or read about other big families and so many of them have terrible stories to tell about strangers being disapproving, or even their own family members saying rude things to them about having a large family! I feel elated and blessed that I can say we have never had to go through that. Even so, each time we announce another pregnancy we do so semi-nervously. We feel happy and in love and excited in our home...and then sometimes we feel awkward and nervous about what other people think. Of course we shrug it off, of course it only ultimately matters how WE feel. If we are doing a great job and if our kids are happy and are raised in an awesome loving home... that is truly what matters. It's still sometimes weird to be the "weird ones" that have never heard of birth control or the ones that don’t know what "causes that." :)  So I wanted to write and remember how much I appreciate the support and congrats we ALWAYS get. This is our baby; it doesn't matter if a pregnancy is the first or the third to a couple -or the 15th- Our baby is OURS and we love him or her and that baby is already a part of everything we do and love.

On Thanksgiving Day the kids wrote things they were thankful for on our chalkboard. 
Before going to bed I saw our stick family selves with the words Big Family above it, complete with a belly on me and Sebastian holding a sword, and it filled me with a lot of joy.  During this time I was coming out of morning sickness, we were having a hard time with the flu and Everett was a very demanding and cranky toddler. It is inspiring to me that the kids were excited and full of gratitude during even some tough times.
 

Layla made this picture around the new year and I just love it. I couldn't believe it when she showed it to me. She worked very hard on it and there's a lot of love in it. I love how her sisters and her all have hearts and flowers on them. She wrote 'love' on her shirt and I'm touching her Dad's arm. She dates pictures herself which is wonderful. This is a family treasure I'll hang up on my wall and never take down.

We add personalized family ornaments to our tree every few years or so. This year we had to upgrade to a Christmas decoration that sits on a shelf in order to get all our names together.

Ricky gave this to me for Christmas in honor of our new baby. It says "Baby's first Christmas." I have a Santa Claus collection and every year I get a new Santa or two from family members. I teared up at how sweet and thoughtful it was! How memorable and meaningful this is!

My Grandma Wanda and Aunt Sharon brought a Christmas stocking over for the new baby on Christmas right along with the other kids'. It's not shown but it had a taped name card on it that said "New Little Baby."

 My dad sent me this email after I emailed him that I was sick, my voice was gone, and that I had a Pre-Christmas surprise --I am pregnant.

1)  Love You

2) Being sick sucks!

3) Being sick with still having Mom duties sucks even more.

4) This is the first time I have been TOTALLY surprised about your new gift from God.

5) Eight’s enough (unless its not)

6) Nine would be a baseball team

7) Ten would be TWO basketball teams

8) Eleven would be a football team

9) I am excited---- YOU having another baby seems to be the only way we get anymore grand kids

10) Get better and have a MERRRY MERRRY Christmas

11) Love YOU

A friend just sent me her copy of the newest Duggar book to read and it's the perfect timing! I'm very thankful! It's inspiring for me to read and enjoy the Duggar family after going through a lot of stress and being really cranky with the kids lately. I had just talked to Ricky about how over the past few months I started a really bad habit of taking my stress out on the older kids, grumbling at them, and being over critical of how they do things. I expressed to him the fears I had that they would grow up and be that way if I did not change. I have changed this habit dramatically over the past couple weeks and told them I was wrong to act that way and I'm sorry. Reading about the Duggars makes me feel more grounded, inspired, organized, motivated, and more thoughtful in general. We have always focused on and aspired to raise a family full of love, compassion and respect for each other as they do.

This is what I mean new little baby -you are already a person that we love. Welcome to our lives little baby, we’re so glad you’ve come to us!

Penelope

A day after we were home from the hospital I saw on our dining room chalkboard wall "Bring Nellie Home" written around flowers, hearts and other pictures from the previous week. I stood and stared at it almost welling up with tears. There are those moments when you look at your child and wonder 'what if the worst happens to my child, what if this actually happens.' It can be triggered by a sad news report involving a child or something like a medical uncertainty and scare. The moment when you stop and imagine the unimaginable can also be triggered by nothing at all, just fear and imagination. It’s called having kids.

In the hospital I soaked up her blue eyes and occasional smile as I couldn’t hide from my thoughts: what I would life be if she weren’t here? When you're in the hospital and bone scans and MRI's start being mentioned you can't help but ask yourself 'what if it is something really bad... and in our future we have to watch her die?' I then thought of other parents who were in the very same hospital just floors away from me who were actually doing just that with their own kids. It's so unfair when kids are hurt. It's a fear and terror like no other I could truly imagine, and of course I have had and probably will continue to have those thoughts and moments with each and every one of my kids. Several years ago I had to stop reading a book where a child was abducted and killed because it was too disgusting and horrible for me to even read in fiction. Even worse the blue eyed child in the story reminded me so much of Penelope that I sobbed and sobbed before finally putting the book down forever without finishing it. I'm a total basket case about things like that and totally avoid it in any form real or not.

No matter how stressful things are day to day I feel we live with a lot of gratitude, I try to pass on that thankful spirit to my kids as we really strive to see the bright side. I feel like the last few months have been really trying and stressful but I'm so thankful our family works together to make the best of it all. I hope the children learn to deal with life as it comes and to keep trying and remembering that this too shall pass. Ricky and I smile and laugh through tough times, we break up a lot of kid fights and live through a lot of toddler meltdowns, we wade through work, home repairs, chores and money problems. We sigh a lot and we hold our head from the stress, we tell each other it's going to be okay... and we have each other. We all have each other. I really try not to get too caught up in the stress because as long as we all have each other things are good.  

Penelope before she turned 6

 No one ever says 'I wish I hadn't spent so much time with my kids'
There are many things that I'll never regret that are time consuming and self-sacrificing. Co-sleeping is one of those things. Beyond just typical co-sleeping though we also lay with whatever child, at whatever age, for however long, to get them to sleep. For example Penelope is six years old and I still lay with her every night to get her to sleep. Usually we let her fall asleep in our cozy bed. Sometimes this is really time consuming, sometimes I don't want to, sometimes I think it's ridiculous because I need to get something done and she needs me at bedtime. Most of the time, however, I find it calming, soothing, bonding, quiet time. Someday she won't be my little girl, she'll be big. She won't cuddle or need me as often, and one day I'll never lay with her at bedtime again.  Sometimes we are tired and heads hit pillows and eyes close quickly; more often though she winds down by telling me about some thoughts, fears or dreams. Sometimes she tells me about something that happened that day and I get to really hear her speak and I often find myself loving her excitement and voice. It's usually during bedtime that I get to find out even more about who she is and how she feels about things. I get to hear her imagination churn on about things without being distracted by daytime sounds or other kids. She tells me about interactions with her siblings, too. Once she repeatedly reminded me to talk to Layla about something that hurt her feelings. We kept forgetting during the next day to talk to Layla, but at night she'd remember and talk about it with me. She tells me sweet things too. She'll tell me she likes that I am spending more time with her during the day (I cut out internet time and deleted my Facebook two months ago). That touched me so much that she told me that! Tonight she told me that she couldn't wait until she could run again (she's on limited movement for illness). I realize as I write this it's not always what she says but how she says it. She's just so sweet. She rubs my arm sometimes while she falls asleep. I think about how safe and warm she must feel. I think about how I slow down and take the time to enjoy my kids -not just my babies- and I so enjoy our quiet bedtime routine together. Ricky and I had a chuckle the other day over her telling me during quiet bedtime talks that she doesn't like it when daddy is on a business trips but kinda does like it because she gets to sleep with me all night long. :)

Update on the illness: Penelope's health continues to improve. She still has a cough, but she is on the mend. We had a couple more days of concern, swollen neck lymph node, fevers at night that went away and a little uncertainty about if we should get a chest x-ray. She is doing great and we are very confident now she's healing. We continue to keep her close to us, hydrated and on somewhat limited activity. She was skipping around the house after three days being home from the hospital. We had to keep reminding her to rest, rest, REST!!

I'm pregnant, this winter is crazy and we had to stay in the hospital with Penelope

I think I handle stress well until I have a stressful situation turn me into a basket case with a raging headache! We were anticipating a nice calm winter but we were wrong. I guess it’s time we had an off winter after so many years of super easy illness.

It seems like every time I get caught back up and on track something just kicks us down again and so I just post a couple sick related updates instead. It's been really crazy. I haven't had the time to even post a I'M PREGNANT with baby #8 post!!!!! (We are so happy! We think baby is a girl, due in June) I'm also behind on emails and responses, and I haven't yet been able to finish posts I have written about: leaving facebook, Christmas, various kid things and now I need to update about our Penelope's illness and trip to the hospital. I have many things in my drafts folder, so one day there may be a whole storm of backdated posts. This ones backdated as well.

Our life is not that rough, we are extremely blessed and lucky and happy, but the winter has brought us non-stop challenges and every time we get past one I think ‘boy glad that’s over!’ and we get back on our routine and then BAM something else happens that sends us spiraling backward again. We are so "behind" with school and it's so frustrating because we are all trying so hard! Since November we’ve dealt with nothing truly horrible but just a whole bunch of stuff: morning sickness, teething baby, weaning baby, household flu, upper respiratory illnesses, bronchitis, two broken teeth (two different occasions!), even more teething baby, croup, hospital trip /possible serious illness in Penelope, AND even more coughing. Not to mention a VERY unruly, defiant four year old, and a two year old that does stuff like dumps pencil shavings in the toaster. (lol.) Because of Sebastian's violent and cranky behavior lately we took our large TV and video game set up down and put it in storage.

THE HOSPITAL TRIP...
I could write for days about our 10 hour ER and the subsequent 14 hour hospital room stay. We just got home yesterday and my head is still throbbing from the stress.

You probably think we spent 10 hours in the ER because it was super-crazy busy. Nope. We were sent over by our family doctor and seen in the ER within 20 minutes of arriving and had attention right away.

We were sent to Children's Hospital from our family practice office because our six year old daughter Penelope couldn't walk at all due to extreme pain in the pelvic area and groin. She cried out in pain even when we carried her from room to room in the house. She couldn’t even roll over in bed, and she had a fever too. Our Family Nurse Practitioner (FNP) mentioned toxic synovitis as a possibility but we needed to have it checked since her pain seemed so severe. We needed to rule out something more serious (like bacterial infection). After10 hours in the ER we were ultimately admitted overnight after blood work, urine test, one x-ray, two ultrasounds and one CAT scan.

The x-ray showed no fractures or injury. The ultrasounds showed no fluid around the hips ruling out bacterial hip infection and bacterial synovitis. They said her bowel looked slightly inflamed and she had "a lot of stool." They then pursued an appendicitis diagnosis against my insistence that her abdomen does not hurt her anywhere. She complained of her abdomen hurting ONLY during and after deep abdomen ultrasounds and palpation from at least 10 doctors in a row. She is sensitive and says just about everything hurts her; I know her abdomen was not an issue, she just didn't like having it touched. She was in so much pain as we moved her around that she was given a small amount of morphine. We allowed a CAT scan to rule out other abdominal issues anyway, including appendicitis, because we know how serious that could be and they would do a scan of her hips as well. We just knew something was going on in her pelvic/pubic region! Afterwards they didn't entirely rule out appendicitis but it didn't appear to be the issue. They started talking surgery on her bowel or appendix anyway. When I questioned them about possibly taking out a healthy appendix I was told, "Well, if there is one healthy organ you could have removed but not need it removed the appendix is the one you'd want it to be." I was so appalled!  Were they just suggesting that accidentally removing an organ would be okay as long as it was one that doesn’t seem to do anything much??? Who pays for that? What about poor Penelope and the risks of surgery? Furthermore, I do not believe the appendix or anything about the human body to be useless! See for yourself.

Then surgeons meet with us to poke her more and talk to us. I was still so afraid something serious might be wrong that I didn’t come unglued and irate, but I should have done this. This is one of the best hospitals in the nation, I trusted them way too much. Lesson learned. I should have never let my guard down.

She continued to hold her pubic bone and groin area in pain every time she coughed or moved and it went largely ignored. I constantly pulled up her hospital gown in front of doctors and over her underwear I pointed to her pubic bone and said, “It hurts her HERE THE MOST.” They said they had no idea what was wrong with her and because of her pain we should stay the night. We were told she was constipated because of the stool they saw on the CAT scan, which we felt was also wrong. She hadn’t been up and around much and she was in pain and frightened at the hospital. Pooping probably wasn’t on her body’s list of to-do items. Sheesh. 

I have an Orthopedic Surgeon family member who lives out of state and once he caught wind of what was going on he said Penelope's pain is exactly what he has been seeing a lot of this winter: Toxic Synovitis. He described that parents have been carrying their kids into his clinic because they cannot walk and they have had a flu or illness recently which is now accompanied by severe debilitating hip, groin and pelvic pain. Fluid does not have to be present and that's all the Dr's were looking for, but they were ignoring all of her other symptoms!

We were given a hospital room finally at 9:30pm and three more doctors (two actual doctors and one resident) examined her until 11pm. I finally kicked them out. They wanted to give her a nose swab test at 11pm while she lay exhausted and sleeping; as one Dr. continued to poke at her while she slept she moaned uncomfortably --I told him absolutely no more!!! Get out! Thank goodness I had just experienced a nose swab for the first time back in November with the flu or I wouldn’t have known what it was really. It’s totally deep, annoying and painful! Why would they not let a child rest after 12 hours of examinations and tests!?  I felt like if I let them do that to her I’d be completely betraying her. It was not needed at that moment and she was sleeping after hardly any sleep the night before. My poor baby girl. 

During the night at the hospital she made a lot of improvement and began rolling over in bed without pain! Further into the night she also sat up without pain, and finally she could walk to the bathroom! She still moved very slowly but it was finally without crying out in pain. She said she was just a little sore.

During the night when she woke up they gave her Miralax in a large cup of lemonade that she did not drink much of. She woke up later and made a bowel movement. She did NOT have a full "1x dosage" as it says on her paperwork and we do not think it helped her make a bowel movement. The next morning she made a bowel movement on her own without the aid of anything and then again on her own today.  Not constipated. 

I began to reflect more on what had happened to her (all the tests and them not listening to us) and looked further into her symptoms. Read about it here: http://4kidsortho.com/html/toxic_synovitis.html she had EVERY symptom EXACTLY described for Toxic Synovitis just like our family member orthopedic surgeon suggested.

In the morning I said I wanted her to be released and told them I thought she had Toxic Synovitis (viral). A doctor there agreed that it "could" be that... "Or constipation."

Children's Hospital sent us home (after sitting and waiting a full 5 hours for discharge papers) with the most disappointing care instructions:

 -Prescription of Miralax for constipation and instructions to give her Tylenol for fever.

-Follow up with our family doctor if needed.

-She can also go back to full activity/school.

I threw a hissy fit when leaving the hospital. I sorta-kinda yelled at the nurse’s station full of Dr’s and nurses. Oops. :P (don’t mess with Mama Bear!)

I asked our orthopedic surgeon family member what care instructions he gives a child for viral Toxic Synovitis and he said the following:
-Ibuprofen 3x a day for 5-7 days for inflammation and DO NOT miss a dose.
-No activity other than walking to and from bathroom and kitchen; lots of rest.
-NO RUNNING.
-No going to school for 5 days; too much activity there. (Not applicable to us but good to know.)
-If a fever over 102.6 for more than two days get her evaluated, it indicates the bacterial infection and she probably needs antibiotics.

We got home yesterday exhausted. Our house was tidy, new food was on the shelves, laundry was done and my Aunt, Grandma and children had worked hard at keeping everything nice and orderly. Thank God for awesome family and good kids. Sixteen year old Charlotte kept the laundry going nonstop (we were behind a few days –which is a lot when you have any kids let alone seven!) and she and the boys kept up all their chores up while we were away. What a relief after that horrible hospital trip and stress!

I was exhausted and wanted to stay home today but I still immediately called and had Penelope reexamined at our family practice this morning for a possible diagnosis of synovitits and to go over the disappointing ordeal resulting in hospital misdiagnosis and a very poor treatment plan for a still very sick little girl. Bless Charlotte, Sage and Ethan’s hearts for watching the kids again so I could take Penelope alone.  Sebastian and Everett can be such a handful right now but the big kids are so good about knowing we just need to get Penelope well! I love my family.

I reviewed all the information and hospital stay with our Family Practice Clinic Docs and they definitely agreed with me about the misdiagnosis and told not to give her the Miralax.  I was then asked if we received the chest x-ray they recommended to the hospital when they referred us over. We did not.  Apparently they have a concern about a sound in her right lung and are concerned about pneumonia. This is extra concerning to all of us today since Penelope’s cough gets a little worse every day and Penelope was discharged from the hospital with a fever.

So our treatment plan is now:

Synovitis:  Follow the same things my orthopedic surgeon family member suggests for his young patients with Toxic Synovitis. Watch for fever and to get Penelope an x-ray in 2 days if her cough is not improving, especially if it’s accompanied with high fever or if she just is generally unwell.

The family practice we go to is a holistic environment run by a medical doctor who has several RN’s & FNP’s staffed. They all have various extensive experience or degrees in homeopathy, naturopathic medicine, clinical nutrition, botanical medicine and more.  They listen to us, work with us, and we love them for it!

Penelope was prescribed two prescription homeopathic cough medicines and they really seem to be helping her coughing fits so far. I asked if other family members can use it and they can. Sebastian and Everett are both on it now too.  Lastly he told me to keep up with vitamin D drops and probiotics.

So, that is the long hospital ordeal. I have other things to write, so many thoughts and so many thanks I owe to family members. It needs its own post. Hopefully I can find the time. 

Lastly, we haven't even got the bill yet and I am gearing up to fight the hospital stay bill for misdiagnosis and sending us home with a sick child without a treatment plan.  If any Dr. thought it could be toxic synovitis we should have been given a treatment plan for that as well. Not just told she can go back to “full activity.” I already have an attorney. That’s how fast I roll! Don’t mess with Mama Bear, because this is what you'll get.

And now this is me with my baby girl cub over the past week. 

 And now hopefully I can get a break (haha) and some happy more frequent updates will come! Because "WE" as a family are fantastic. We are in love with our baby due in June (the kids are so excited) and after all this stress and craziness we just keep pulling ourselves up and getting reorganized!

SICK AGAIN: You've got to be kidding me!?

Life was getting back to normal. We got over the flu and in two short weeks we celebrated Sage's 13th birthday, we went ice skating, we saw Santa, I got all the laundry caught up again, I was feeling 100% better, I cleaned and de-cluttered like crazy; I even dusted the ceiling fans. We decorated inside and out and baked tons of cookies, we made Christmas cookie care packages for all service people/ mail carrier who stopped by, we happily made crafts, Smith-wick (our elf) brought great joy and fun. Sugarplums danced in our heads for the better half of December. I spent loads of time doing other things with the kids too, like making Santa faces from paper plates and cotton balls, watching Christmas movies, hanging red and green paper chains all over the house, playing and reading. We made delicious homemade pretzels and everyone settled in and enjoyed the time together (and being well again). On the Winter Solstice we decorated a tree outside with apple rings, birdseed pine cones and circle pretzels as offerings for the "snow angels" just like in Little Bear, and we sang.

Things were indeed TONS better. The kids were weaned of the TV after being sick and overloading on it, the house looked great, we were happily awaiting Christmas Eve. Then I noticed sniffles and sneezes starting up in the kids. I soon woke up with a sore throat, it appeared we were getting a cold. Just a day before Christmas Eve a few younger kids had fevers. I was nervous but super hopeful and sure it would be no big deal... Christmas Eve came and we watched my favorite comedy Christmas movie that we all totally enjoy and laugh wildly at, Jingle All The Way. Christmas morning came early (5:30am) and we had a lot of fun and family time full of joy. Sebastian enjoyed his toys for a few hours and then laid down on the couch with a warm rosy face; the poor little guy burned up from there on and didn't get up the rest of the day except for us to give him drinks. Ricky felt under the weather by 11am and took a nap until 1:30. Aunt Sharon and Grandma visited and overall we had a nice time and pretty Christmas dinner. By the time they left Charlotte was in bed sick and other kids seemed feverish, too.

For the following seven days after Christmas I walked around the house getting lethargic laid up kids orange juice, water, hot tea, cold rags, medicine, tissues and small meals while repeating to myself "I just CAN NOT freaking believe this. THIS IS SO NOT FAIR." Ricky recovered quickly and was able to help me thank goodness ( just as I got sicker). It was/is an upper respiratory virus and some of us now appear to have bronchitis. It's not nearly as bad as the flu but it still took its toll on all of us. With the flu it was just misery, with this "cold" at least Ricky and I got to spend time together snuggling and watch TV (although interrupted often by kids needing us). So now we're back to square one, recovering as I pick up the pieces of a messy house and getting caught up on laundry. I so did not expect this! We've never all been sick with a flu or cold ALL at the exact time and here it happened back to back in the same month and with a vengeance!! I can't fathom it still, even though I lived it! I'm thankful we are up healing up faster this time and even us bronchitis stricken people actually seem to be fairing okay. In hindsight we are awesome and we are troopers and we overcame all of this: but man did it suck. (Still sucks since we really aren't over it yet.) New Years Eve is upon us and no one feels like eating much, nothing sounds good at all and as a result we have no party food or drinks or noise makers. Bah! Humbug! :) In reality though my head is full of snot and I'm coughing like crazy so I don't care. I've been holding Everett all day because he's still not feeling well. I wanted SO bad to be all better this morning that I thought I was... I was so determined. I started trying to do my normal Monday routine: stripping the bed for washing, making the bed, cleaning my room, starting the laundry, making breakfast... I made it as far as taking the pillow cases off our pillows, making hot tea and starting one load of laundry before I was EXHAUSTED and holding a fussy baby on the bed as we both dozed off restlessly.

I can not wait to be normal again!! I have things to do and kids to enjoy and decorations to put away and a house to clean... we have loads of school we have to catch up on and I have so much hope that this was the last of illness we need to have for a long time! I hope the winter goes by as fast as it came and with lots of: trips to the Magic House, school/art projects, more pretzel making, good conversations, family games, hot cocoa, winter hobbies, a few home projects... and a snowman or two!

Kid Break ~~Relaxing

Aunt Sharon hasn't seen the kids very much lately and wanted to give us a much needed break after being sick so she picked up the kids Saturday for a sleepover. They all go now, even little Everett! It's SO cute watching him go. This is his second sleepover. The first time I was thinking about him nonstop and missing him a ton! This time I was really mellow probably because I needed the break, but probably because the weaning is in full swing so it makes it easier knowing he's not really expecting me to nurse him. It's so cute when he's in the car with the other kids waving goodbye to me and giving me a kiss. His cute little two year old voice and chubby hand waving. Oh the cute. The little kids are all really cute when they go. I'm always surprised how much they wave and kiss me and say goodbye. At times we can get so burnt out, so tired, so sick of each other, but when we part for a day or two there is such a sense of love and appreciation. After they left I excitedly told Ricky, "They love me, they really showed me that they love me with their kisses and goodbyes." :) Sometimes being a mom is a thankless job, and sometimes it's totally not. :)

Ricky and I relaxed and just enjoyed the quiet house for a while. I thought about doing some housework without being disrupted but then thought nahhh. We went out to dinner in the evening and then walked around the mall for about 20 minutes and bought a new personalized family Christmas ornament. Malls aren't our scene at all, but once in a great while we'll stop by one for some reason or another. We watched tv briefly at home before turning into bed. We slept in this morning until 9:30; waking up to a super quiet house and warm snugging bodies was so nice. Since I was sick for so long and unable to breathe well or be close to Ricky we are extra-enjoying being close again. Our furnace went out last night so we were under three heavy blankets and stayed nice and warm and cozy. Ricky looked at the furnace this morning while I whipped us up an elegant breakfast for two. It was fancy and super-fantastically delicious! Chocolate covered strawberries, blackberries, hot cinnamon rolls, egg and ham croissant sandwich and a side dish of organic vanilla-banana yogurt! Romantic breakfast for two in heaven!

Unfortunately the furnace issue is not resolved. I think I want a post breakfast chocolate-strawberry snack before we re-read the manual and decide if we need to call a real repair person. A couple years ago we ordered a part and made a repair on it ourselves, but we can not for life of us remember what we did! I think we are also off to buy another space heater or two...so far it looks like it's going to be a cold night or few days...

Update: We have finally located the igniter and somewhat remember replacing it before. We checked and it's not lighting, so we have all the info about it and luckily remembered where we took it for replacement part (not a regular home store an actual manufacturer supply place). Tomorrow I will hopefully be able to pick it up at the same place without a wait! For now we will sleep and heat two rooms like people did in the old days of winter! (Except we are using handy electric heaters instead of wood heaters. :) Tonight's low is the coldest of this season, 20 degrees! Burr!

Sick, The Quest for Some Family Time, Weaning Toddlers

I was sick forever. Ok, it was only a week, or nine days...give or take...but it was awful! Layla brought us influenza B home for Thanksgiving, so over the Thanksgiving holiday people started falling ill. The kids were pretty easy and straight forward; fevers, tired, achy...then I got it. I was the sickest of all. It was totally pitiful how sick I got. I slept for six hours a day, the kids watched six hours of TV a day. It was misery. Everyone got over it slowly, but I got over it even slower. I'm still totally recuperating but I'm much better now. I have some cold like symptoms and until last night I hadn't slept an entire night in two weeks. Usually we have our tree up by or on Thanksgiving, we finally got it up yesterday. We have been doing Christmas crafts and finally getting more into the holiday! Funny because we had actually started early last month, we had Christmas music playing as usual in November, but then everything got put on hold.

CRANKY MOM, FAMILY TIME

I feel really bad I've been SO bitchy to the kids. I really do. I've been: tired, cranky, demanding, impatient. It happens from time to time, but being sick has just made me even more miserable I'm sure. I wish I had the grace of Michelle Duggar. I would love that. I would love to treat my little people with more respect sometimes; I would never nag at my husband the way I nag at them. It's a reoccurring theme, and I need to re-read this post and I'll feel better and try harder and start over from a place of more patience. I'm always working at being a better calmer mother-person. Things have been very stressful lately, I need to remember that first. Second: things will get better. For months and MONTHS Ricky's been working a lot, which is totally understandable and needed right now, but it has made things more stressful. We are both tired, stressed and busy and while that doesn't reflect on our relationship with each other it does on the kids. I'm more stressed, he's not seeing them as much or playing with them as much. It's just hard. A lot of nights we just rush around trying to get them in bed so we can talk for 30 minutes and then either collapse on the couch together or in bed. I'm in bed a lot since I'm so sick. We recently have been trying to watch more TV in the evening with the kids. It's hard because there is not much we can watch together as a family since our society thinks family TV has to include non stop adult themes, teen dating and/or crude humor filled with stereotypes. But, we've found a few shows we like and with holiday movies and shows being in season it's much easier right now too. At least if we are tired we can still sit around together and be in each others company instead of rushing everyone off to separate rooms for quiet time or whatever. This craziness is just a phase though: things get better and worse, rinse and repeat, it's called life! I'm looking forward to us feeling better and playing more family games in the evenings again.

WEANING THE TODDLER (otherwise known as the baby)

Before any of the sickness started, right about the time Ricky started working a lot more hours on some special projects, Everett started getting really cranky and going through a "stage." It was what we called 'a REALLY HARD time that would pass.' That has now been compounded with weaning him. So he is EXTRA cranky and needy now, but things are improving with him! He is starting to understand more and the slow almost-child-led but mostly mama-led weaning is going well. It's so very hard for a child to make that transition. Weaning is forever, it's a huge milestone as well as a huge new development into being his own person. In addition we both have to learn an entirely new toolbox of mothering and soothing skills. It's not just about him not nursing anymore: it's him not getting extra calories, him no longer getting my antibodies that help him during colds and flu, him needing something new to do instead of nursing for a big owey or emotional breakdown, him needing a new way to fall back asleep at night, him needing a new coping strategy for teething, him needing to find something to do when he is bored...and the big one me and him HAVING to find away to get him to sleep for bedtime and naps to begin with. His life is changing big time; eventually he won't remember it, but it will be forever a part of him. Even though I'm SO, so ready for him to wean, it's still bittersweet. He's still my baby, he'll always be. We have some tears at night and nap time when I just *won't* nurse or when I nurse him and then tell him 'all done now.' (Because physically it's just NOT working for me, not because I'm trying to withhold from him through will-power, I'm actually at that point where it's just not working out and milk is drying up.) As we lie together and I try to soothe him it's getting easier every few days. He's getting older and more understanding (or at least accepting). He's doing great. Today he found ice cream cones in the cupboard and wanted ice cream. We are all out of ice cream. A couple months ago he would have cried and cried because emotionally he wouldn't have been able to accept not having ice cream in the house while having the cones in his hand. Today he got over it after looking in the freezer and accepted it for a simple reality. Growing up is AMAZING. Lots to learn about cause and effect and acceptance...