Nevertheless, She Persisted

Today was surgery day number two:

We even got to see our friend Marianne, the chaplain from chapter eight of our book!

Nathan took Kyrie for some walks while we waited our turn, but they were so worried about her airway we didn’t have to wait very long.  She got an albuterol treatment beforehand, and then they came for her right after that.

A nurse came in and said she knew Kyrie was medically complex, and asked if she needed a catheter.  Kyrie said, “Don’t you dare!”  It was so funny!

Meanwhile, the children were playing back at our host family home while we waited.

When we got back to anesthesia, they tried having us lay her down on her back so they could put the mask on her.  That’s when she freaked out, because she has never laid on her back.  She would have taken the mask like a breathing treatment if they let her sit up.  

Regardless, it’s a heartbreaking thing to watch your child struggle and then see the life drain out of her as she goes to sleep – and I hate that she has all these medical procedures that violate her body like that.  We tried hard, asking which arm she wanted for this or that, or if she wanted Mama or Papa to hold this or that, or if she wanted blood pressure on her arm or leg, etc.  But there are no choices about anesthesia, and she knew we had again betrayed her.

Some results came quickly, and some we are still waiting on…

She has new nodules growing on her vocal cords, probably from so much coughing and choking, that can get in the way of transitioning between breathing and swallowing, and also impact speech (which is already super nasally from the cleft palate and wonky uvula).

Her “prominent tongue base” is blocking her airway, which we already knew, and is a significant problem.

Her epiglottis is also too big and the wrong shape, causing problems with managing her secretions (aspirating on them) and breathing and feeding.  And beyond that, her airway is still too small.

Beyond that, her right lobe of her lung was full of fluid.  That’s the same lobe she usually gets pneumonia in, and so they think she is continuing to aspirate more than they thought… and so they made her NPO!  That means nothing by mouth!  Like at all, ever!  From now on, she has to be fed exclusively from the g-tube.

(Think about that.  No birthday cake.  No popcorn on movie night.  No apple juice.  No chocolate milk.  No crackers – that child has lived on crackers and cheese since she could walk!  Not even sacrament bread and water.  No snacks in nursery on Sunday.  Nothing.)

And, instead of coming back next year, they want us to come back in three months.

We were shocked, even though we know we have one sick little girl.

In the meantime, the children had a Moana movie night with popcorn and everything!  How’s that for special time to keep them calm and distracted?  They were so worried for her!  Time and again the blessing has been fulfilled that their prayers would save her.


I was relieved they were safe and distracted, because we were terrified.

We nearly lost Kyrie again today.

She struggled with extubation, as she does, and they took us back to PACU in case she passed and called the chaplain for us. 

But they were able to extubate her, with high flow heliox (helium to make the oxygen lighter to make it easier to get it through her small airway). 

She was in a coma, but breathing. 

We fought through a coma and a collapsed lung and a rough awakening that made her mad as anything, but by the end of the night did not have to admit her since we already have palliative care.

 She *is* breathing.  And she is home with us here.  She is breathing.  She is breathing. She is breathing.

I’m not yet, but she is.

We wait now for more test results, including the big one of the MRI about the stroke issues in her little brain… and the pictures of her jaw for information about options for her airway (another jaw distraction or a trach, etc.).
And this girl?  After so many scares and such a hard week, she is breathing.  That’s all that matters.

Except for what matters to this girl.

She has now been told she cannot eat anymore, and she is mad as she should be.

But I love bananas, Mama!

I cried.

She cried.

Nathan went to the grocery store in the dark, picking up banana baby food.  We used a slip tip syringe to inject it into her belly through her g-tube, and then let her lick the very tip – not enough for any substance even for secretions, but enough to think she had a taste.

Thank you, Mama.

I love you so much, Mama.  

And I also love bananas.

What do you say to that?

We got this, baby girl.

We are a family who does hard things.

And then she gave herself some yogurt, which we also got since she had so much medicine today.  I helped her draw it up and get out the air, and she leaned back on our pillows that prop her up so she’s not really flat on her back.  She opened her Mickey button by herself and put the syringe in by herself.  And then we pushed together.

Because I’m hungry, Mama.



Kirk’s Visit

Kyrie is out of the hospital for today!  This is great news and such a relief.  We won’t know any results until tomorrow, so there isn’t much to share.  She is tired and miserable, but breathing and beautiful.  We will take it!

While she was recovering, Kirk got a visit today!  We got to meet his biological father’s parents!  They drove all the way from West Virginia to meet us in Cincinnati!  Can you believe that?  It was a huge sacrifice of love, and a testimony of the power of prayer. 

Kirk lived with them through his toddler years, when his mother moved him away to Oklahoma.  It’s been four years since they got to see him, and have been praying for him ever since.  They had so worried about him and what would happen to him, and we love that they are our greatest fans on Instagram of all places!  We get tons of updates about his family that way, and we love being connected to them.  We believe in families, and the family is West Virginia is a huge part of Kirk’s life and so very important to us.  We were so honored to meet them today!

They brought some of Kirk’s toys from when he was a baby, and told him about his first tiny braces, and we even got to call and leave a message for his father – who so wanted to come but couldn’t get off work.

They also brought a little gift for each of the other children, which was super thoughtful and so kind.  They even bought all of the children’s books!  All of the children were delighted, and now they have money enough to go to a museum on the way home that they have been dying to check out.  The visit so lifted their spirits!

We are grateful for so many who love these children and bring them such healing from years past.  Today was a huge piece of healing for Kirk, and such a big connection to his identity and attachment.  We are so grateful for their effort to come see him!  It was a very tender visit, and a most special day!

(Oh, and also Barrett fell face first in the mud, because of course he did.)

Happy PRS Day!

September 5th is PRS Awareness Day!

Pierre Robin (pronounced “Roban”) Sequence (PRS) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw (micrognathia) or set back from the upper jaw (retrognathia), a tongue that falls back in the throat and obstructs the airway (glossoptosis), and difficulty breathing. Most infants, but not all, will also have incomplete closure of the roof of the mouth (cleft palate), and is commonly U-shaped.

The small or displaced lower jaw also causes the tongue to be positioned at the back of the mouth, causing breathing difficulty at birth. For some patients, these physical characteristics may result from another syndrome or chromosomal condition. The most common is Stickler Syndrome.  Kyrie’s was caused by the substance abuse of her biological mother.

PRS, like most birth defects, varies in severity from child to child. Some children may have more problems than others. Problems in breathing and feeding in early infancy are the most common.

Children affected with PRS are often slightly below average size, raising concerns of incomplete development due to chronic hypoxia related to upper airway obstruction as well as lack of nutrition due to early feeding difficulties or the development of an oral aversion. 

Possible complications include: Breathing difficulties, especially when the child sleeps; Choking episodes; Congestive heart failure; Feeding difficulties; Low blood oxygen and brain damage (due to difficulty breathing); Pulmonary hypertension; and Death.

This little girl has endured so much, and fought for every day she has lived, for every breath she has taken.

She has had surgery after surgery, from the day she was born in jail and I received her blue as anything from the ambulance that morning she was rushed to the hospital.  Kyrie’s twin sister did not survive, but her gift of anatomical tissues helped recreate some of Kyrie’s airway and mouth structure.  We always honor that little one on this day, too, when we remember all Kyrie has endured.

That’s how we learned about PRS, when we had never heard of it before Kyrie came to us.

Prayers for this little one as she goes back to the hospital, out of state and a thousand miles from home, for more surgeries today and tomorrow.  Your prayers have pulled her through from one miracle to the next, and we are so grateful.  Your support, and encouragement, and prayers have lifted one little girl who could not have made it far in this life all alone.

Thank you.  Really.

Monday Prep Day

I don’t have many pictures from today because I missed most of it.  Nathan and the children let me sleep late, which almost never happens, but seems to always happen in this house.  The beds are delicious, and I know the children are safe here, and the boys of the family we stay with help me so much I could cry.  It’s like my body know we are in a safe place, and crashes in a way I can few places in this world.  I was so grateful, and felt more rested than I have in ages – maybe since I was here last.

When I finally got up, the children were dressed and had already eaten and had scripture study and were just waiting on play shoes, which were packed because we had arrived in Sunday clothes!  Nathan even had started laundry for us.  I was so grateful to all of them for their sweet help and good care.

Even Kyrie was feeling better, dressed and wanting to play with the “puppy” – who was so sweet and gentle with her!

The children were under excited to trade me Sunday shoes for play shoes!  We laid down the boundaries of staying with one of the Evanson boys and the boundaries for the “forest” before releasing them to the wild.  But then! Boy, did they fly out of the house!  I loved watching them run out and around the house past the chickens and into the woods.  What memories they are making!  

Once they were on their way, I walked Kyrie to visit the chickens.  She loved them so much!  She was shouting, “Come here, baby chicken!”

We were getting concerned because since her last aspiration incident and not feeling well on the way here, she has pretty much refused food orally.  It was bad enough this time we were having to push all her liquids via g-tube just to keep her hydrated.  We do have the g-tube, though, and so she can stay hydrated, and for that we are grateful.  

But by lunch, she had perked up again.  She spotted bananas on the counter, and those are her favorite!  We had sandwiches for lunch, and bread and cheese are other favorites.  She got pretty interested in oral eating pretty quick, and actually ate a lot (for her) at lunch and dinner!  We were so relieved!

When I laid Kyrie down for her nap, and swaddles and sang to Barrett, Nathan took the children with the Evansons on an outing!  They got to go to the lake and row boats!  I wish we had pictures, but obviously since I had to stay behind and all of them were on boats, we weren’t able to get any.  But I did share with their biological families that they got such adventures!  They had a blast!  This thrilled me to no end, and I loved hearing their stories as they tumbled back home again at the end of the afternoon. 

The afternoon, though, was more rest for me.  Both Kyrie and Barrett went down for naps easily, and slept the entire time everyone was gone.  I got to do my scripture study at my own pace, finish sorting our laundry and packing everything up in outfits for the week and trip home, and spent some time watching the sunlight dance in the trees.

This gleeful return of the children brought me back to the noise and chaos of so many little ones, which was soon multiplied by the rare excitement of them getting to play video games.  We don’t have them at our house, so it’s a special memory of playing them here, and competition was fierce!  They squealed and laughed and shouted at their racing cars until my ears burned, and I was very glad when it was time for dinner!  

There is so much noise, and so many voices, and such intense abandon in the most wonderfully healing ways. 

Sometimes I see how, that while Heavenly Father did not want Kyrie to have to endure all she has, our friendship with this family is one of the gifts we have been given through the experience – and such healing it has brought us as a family!

Dinner was a Cincinnati tradition for us, something they made for me that first summer we were life flighted here and again last year when we came back for palate repair.  We love it, and always feels good after our packed food on the drive here.  The children gobbled it up, and were great at getting showered and into their beds for “talking time” – which is only a tactic we use to keep them in their beds while they wait for everyone to shower before lights out, and reduce the chatter after lights out.

Nathan is currently reading  The Hobbit to them, while I finish putting away all our clean laundry.  We are as ready as we can be for the next few days, and as calm as we can be about it.  We will wake Kyrie again at 1130 tonight to give her the last feeding she will get until Wednesday night.  We hold out hope, though, for quick and easy procedures and a happier and healthier little girl by the end of the week.
Where there’s life there’s hope.

~ JRR Tolkien, The Hobbit

Sabbath Morning

Kyrie woke yesterday with solid sats that held most all day!  We are so grateful for your prayers!  We wanted to get her as strong and stable as we could before throwing her back in the car, so we first walked around the river by Fort Madison.

They loved touring the fort, though Kyrie was mad because a butterfly flew off without her.

They were especially appreciative of the outhouse experience!

We had just a short drive across the river to arrive in Nauvoo, which is an historic site for our faith tradition.  Back in the 1800’s, the governor of Missouri issued an extermination order for all the Mormons to be killed.  The saints fled across the border and settled in Nauvoo, Illinois.  A temple has been rebuilt there, and I told the children the story of me bringing my mother to this special place once.

We took a break after visiting the temple in our very most reverent Minion shirts, to have a little picnic in the park.

Nauvoo has also rebuilt the little homes that these saint built, and this was the first time we visited in season when the homes were opened for tours.  The children learned how to make shoes, how the old post office works, what a one room school house was like, and how to shoe horses.  They loved it!

Kyrie slept through most of that, and it may be true that Mama slept, too.

Most of the early saints only lived there a few months before their leader was taken under false arrest and then shot in jail by a mob.  We took a moment after the tours to spend some quiet time by the river where the saints actually crossed in the middle of winter.  I can’t imagine packing up what I could carry with my babies and having to walk through and over the river and a thousand more miles west in the cold and snow and ice.


Not far from Nauvoo is Carthage, where the jail is that Joseph Smith was shot in through the door as he sang a hymn with his brother and a few others.  It is a sacred place for us, where the first prophet of this dispensation was killed – effectively sealing his testimony of the restored priesthood and true church of Christ again on the Earth.  It is by this restored priesthood, and the temples we again have access to, that families can be sealed for eternity and not just “until death do us part”.

We drove several hours after our long day, but mostly just to get back on the road and ready for today, our Sabbath.  We got gas last night and packed lunches for today.  We settled into bed earlier than usual, and prepared as well as we could for a Sunday on the road.

Even if that means picnics without playgrounds.

(Kyrie refused to smile for the picture “because Anber is standing by me”.)

We are going in now to a local ward for sacrament services, and then will begin our final four (six with preschoolers??) hours to Cincinnati!

Travels Begin

We made it to somewhere in Missouri last night, and Kyrie slept the whole way while the rest of us listened to Lemony Snicket on audiobook.

We grabbed our two bags plus Kyrie’s supplies and checked into a hotel, settling in just in time for a late dinner.  I heated up stew I made before we left town, and gave them heaps of crackers as well.  It was a snuggly kind of picnic in our pajamas!

We were all so very glad to get good rest.  I had bizarre dreams from ages ago, of little friends I almost remember.  Everyone slept so well in the fancy beds and piles of pillows and ginormous blankets!  No matter where we end up tonight, we all got good rest last night, anyway.  

Even Kyrie woke with a smile!  She still isn’t feeling well, but I am glad she perked up a little.

Know the best thing for a traveling mom?

A huge breakfast buffet for which you don’t have to pay extra, no matter how many children you have!  They ate so much, for so long, and I let them!  They were so well behaved that the front desk lady brought them stickers to thank them?  How cool is that?  They were delighted, of course.

After a break while we did Kyrie’s tube cleaning and feeding, I took the children swimming while Kyrie slept.  We don’t want to push her, and while we are anxious to arrive, the most important thing is keeping her well.  I don’t think the children minded, and I am always glad to disinfect them from time to time.

We are going slowly, but caring for her best we can.   Nathan gave Kyrie a blessing this morning, and about a half hour later she did get down a little yogurt and some crackers.  Whew!   The children are doing great, with a swim this morning and stops to run and play.  They are especially spiffy in their new shirts from a Grandma!

We have finished now our drive for today, and have made it to Nauvoo, Illinois.  We have a very sick little girl, who has not perked up since her first smile this morning.  That was the only one we got today, and it has been fairly miserable.  We are worn out, and she is moaning and crying, and the other children are restless while worried about her.

But crying is breathing, and we will take it.

And we are grateful for the g-tube, as we are able to push fluids even when she won’t take anything by mouth.

Hold on, Baby Girl.  Hold on.

Thursday Therapy-Day

Thursdays are therapy day here.

Mary gets dropped off at 8 for speech.  Then we run Anber to school.  Then we go back to pick up Mary and drop off Alex and Kirk and Kyrie.  Then I switch with Nathan, who takes Alex and Kirk to school while I start homeschool with Mary and Barrett so that their reading out loud is done before Kyrie is home to take charge.

Whew.

That is all before nine in the morning, and the running wears me out.  But with six children in speech, physical, and occupational therapies plus feeding therapies and social skills groups, we are immensely grateful to our team of helpers who work so well with our children – and the scheduler who makes it happen.

Today was extra exciting because Kirk finally got his new hand brace!

Our crazy Thursday morning schedule also means, though, that Anber (who has graduated the other therapies) had to – for the first time ever – go into school all by herself.  Even at church, she at least has Barrett to hold hands with when she does into class!  This is so good for her, though, and she is doing great!  I am proud of our little Anber pants who now had such brave pants.

Then I spent the rest of the time packing.  We did our usual thing of underwear and socks in shorts and pants, and those folded into their shirts.  Then we put one outfit for each child into a backpack, so we are packed by day instead of children.  This makes staying overnight on the way there and home again much easier!  We only have to bring in one backpack instead of eight!

I also tucked Kyrie’s tubie pads into her socks for each outfit, to be sure we have enough and so she can still match.

Today was also fun because Mary got her galley proof of Marvelous Mary, and Kyrie got her book Gee Whiz, G-tube!  We were so excited to see them in print, and approved the orders to start being fulfilled.
Unfortunately, Kyrie woke from nap with a fever and not feeling well and sats dropping, so we are off to the hospital a day early – partly to get there as soon as possible, and partly so we can take lots of breaks along the way to get her out of the car seat and says back up.  We have her feeding tube and oxygen and pulse of supplies, and everything we need for her – because of you.  Thank you.  Really.

But, the children were amazing and we moved quickly after school, and I am only missing one extra day of work, but got FMLA so at least I still have a job.   Everything is settled, except for Mary and school, but we got Alex and Kirk’s IEP’s done.  We love their school, and the teachers and therapists are amazing.  We are so grateful!


Our easy backpacks for traveling this weekend got packed and loaded, we all got packed for next week and will wash the first set for traveling back home, and everyone has a backpack of homework from school plus our homeschool work and school boxes.  Each child brought their pillow and one stuffy.  We got gas and hit the road, doing the best we can.
(Harvey has skyrocketed gas prices, by the way, so we are somewhat concerned by that for such a long trip, but off we go in faith…)

We won’t make it far tonight, but we got a good start so far and any progress we make will help a thousand miles go a little smoother for a little one we are trying to keep off the life flight.  We appreciate your prayers, the miracles of support, and the encouraging messages as we go.  

We will keep everyone updated, and plan to have as many adventures as possible along the way to keep all the children engaged and learning and processing this roller coaster of emotions.   

We are so grateful for our community and our church and our friends who will be hosting us once we arrive in Cinci.   

It’s been a whirlwind of two years of miracles we never thought we would get, and we wouldn’t change a minute of it.

And every minute counts.

The App is Back!

Did you know we have an app?!

It’s been down for a few months while we changed sponsors and waited for upgrades to speed up the more than FOUR THOUSAND posts!

If you have an iPhone, you can search the iTunes Store for “Housewife Class” and find us there – and this hilarious screenshot of Kirk from our last song video:


Then click the download cloud like on other apps:


Here are the device compatibilities:


Welcome back!  We missed you!  It was quiet while I was in residency and writing all these books that are now getting published, but it’s good to be back – and the updated app is super exciting!

Thank you for all the support!

(Turn off app notifications in your phone settings if you don’t want updated when I get off work at midnight!!!)

Barrett’s Book

Barrett has two books, actually, but the first one was published today!

 

 

It’s a book for siblings of medically fragile or other disability children.  We worked so hard on it, and wrote it so carefully, and he is very proud of himself!  We are so excited!

 

 

It will be on sale until it drops on Amazon in about six weeks, so grab it now!

We also have a new package deal for all five of the books the children have published so far!

CLICK HERE to get the books!

 

So Many Surprises

My first surprise today was a toddler crawling up into my lap in the middle of my scripture study.  It seems it was her turn to show me how to make “K’s for Kyrie”.

She also drew this, and said “it is Grandma and Grandad, and Papa and Mama, and Mary and Alex and Kirk and Barrett and Kyrie and Tuffy and Neitzsche”.

Our next surprise was as we got ready to leave for school, and a giant crow flew into our van!  It scared them to death!  I have never laughed so hard!   I’m thinking Birds for the next family night movie?!

After drop off, Mary and Kyrie went with me to some meetings for them… Kyrie was still writing, and put the pencil in her mouth just to wave.  She is such a funny little duck!

We also got another picture of one of our books helping another child going through what we endure, and we are so glad the books are helping so many!  You can see all of our books HERE, and you can also donate there to have books donated to special families who need them!

Mary and Kyrie played house at the doctor’s office while we got paperwork signed.  They are so sweet together!  I love their relationship and watching it evolve as they grow.  It’s pretty special.

We got to say goodbye to the fish at our pediatirician’s office, crossing one more thing off our palliative care bucket list before we head to Cincinnati Children’s this weekend.

Mary finished her homework, and Kyrie took a breathing break on the scale.  We got her weighed in at 22 pounds today (with her clothes on), at almost 30 months old.

I wish I could take a nap with her!  But we have to get the paperwork to the attorneys, and get her to her bed, and me to work for the swing shift after a full day of appointments.  We were all worn out!

Except Barrett, who was hungry and waiting for lunch!

The other three are almost ready to come home from school as I say goodbye to these three before leaving for work.   Me working evenings doesn’t go as smoothly now that half of them are in school all day, and I miss them.  When you have a little medically fragile one like Kyrie, you learn not to take a moment for granted and that sacrifices to be together mean everything – one battle at a time.