Springtime in Holland

Happy Spring!  

Happy Holland!

https://lydiaroseriggs.blogspot.com/2015/08/loving-holland.html

We are still in Holland.  We may always be in Holland.  Only time will tell.  It's beautiful here this time of year.  

When I go back to my original Holland post I still cry.  It's still hard to think back and not know what it's like to have a newborn at home, what it's like to feed your baby from a bottle, what it's like to need a baby monitor because your baby doesn't sleep in a crib in the living room with a nurse.  I quickly snap out of it and hug and squeeze Lydia and cover her in kisses because I have her and I love her with my whole being.

Sometimes, if I dwell on it, I still feel cheated by the experience.  

I never feel cheated with the child.  Lydia is the love of our lives. 

"But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

"And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Double Ear Infection - What the What?

Lydia was a bear to wake up yesterday and cried, complaining that her ears hurt.  She told me she needed to go to the doctor.  Specifically she told me she did want to go to the Hy-Vee Doctor (St. Luke's Urgent Care) but Dr. Davis, our pediatrician.  Considering Lydia's medical history, I took her word for it this time and we went to the walk-in morning clinic.

She called it.  Double ear infection.  She's taking an antibiotic and we can use our steroid drops if things get worse.  We went to Target to pick up a Frozen Imagine Ink while we waited on the prescription to be filled.  Got the prescription and headed home where I thought we would watch movies and take a nap.  

I think she played me like a fiddle.  Yes, she has a confirmed double ear infection.   BUT, happy mood, no nap, full appetite, no lethargy.  Lydia could have gone to school.  So we enjoyed the weather and played outside and in the playhouse during the afternoon.  Back to preschool today.

Weekend Recap with my little leprechaun.

Friday afternoon we had our carpets cleaned for the arrival of new furniture on Saturday.  Everything was damp and slippery so I didn't want to take Lydia home because we couldn't play very easily.  We went to the mall to ride the carousel and she ate popcorn folks!  We then had dinner at MaMa and Papa's and Daddy joined us after work!

She picked the mermaid horse and told me it was Elsa's.  What the what?

Cleaning the stems off strawberries for Papa. 

Helping Daddy blend her food on St. Patrick's Day.

Posing!

Play Doh time with Princess Aurora!

Is this place a zoo? Not quite.

MaMa and PaPa took Lydia to Cabela's yesterday to see the sights.  

If you don't know, the sights are living fish swimming in a big aquarium and... 

dead animals stuffed and displayed = a whole lot of taxidermy.

Oh, she still has a feeding tube?

Yes, Lydia still has a feeding tube.  It's the last major obstacle, we think.  How I wish we could just take it out and she'd eat.  How I wish every time she asks for food she'd eat it and not just play with it or taste it and spit it out.  The good news is, she's healthy and growing and maintaining her weight through the winter.  The bad news is, she is still 100% dependent on a feeding tube for nutrition.

In December we started seeing a feeding therapist that has experience in weaning children off of the feeding tube.  We did water trials to determine if Lydia knew she was hungry.  Basically we withheld all of her tube feedings for 3 days and only gave her water to determine if her body and brain would start signaling hunger and to see if she would consume any food orally.  Well it worked.  She eventually showed signs of hunger, started to realize she was hungry and swallow more bites.  When I say bites I mean a few to maybe a half dozen pea size bites, at best.

Then she starting dropping weight and got sick because we did this in the middle of winter.  Lydia doesn't gain weight in the winter, she gains in the spring and summer.  Lydia is only in the 1st percentile for weight so we don't have a lot of wiggle room when it comes to dropping weight.  Her dietitian and I decided to pause, keep her as healthy and nourished as possible over the winter and wait for the 30 pound mark.  We have about 3 pounds to go.  

The water trials are really to get her circadian rhythm back in action.  She's tube fed on a schedule and is fed possibly more than what she would eat if she was sitting down eating hot dogs and macaroni and cheese.  By giving her only the water to keep her hydrated, we are trying to ignite her brain and those signals.  Your circadian rhythm is basically a 24-hour internal clock that is running in the background of your brain.  It influences sleep-wake cycles, hormone release and ... ... ... eating habits and digestion.

I'm taking the month of March and maybe April, since March is already half gone, to research tube weaning, methods, mysteries, trials, successes, heart aches, setbacks.  You name it!  If it's about tube weaning children I'm going to find it and read it.  There are very few programs worldwide out there to support this.  When is say a few I mean quite literally that there are 3 well known programs that I have been able to find.  

Doctors care about getting children to heal, grow, recover, survive.  Feeding tubes do a phenomenal job in aiding all of that and making nutrition a reality.  Doctors don't so much care about weaning off the tube.  Doctors save lives.  Feeding tubes play a role in that.  Feeding tube dependency seems like a relatively new idea and the idea of weaning off of the tube an even newer one.

That's where we are.  Lydia sits down to breakfast, lunch, dinner and a couple of snack times each day.  She gets all the same food at preschool that the other children get.  She has snacks at the ready in the pantry.  The opportunity is there.  The interest is there.  The timing just needs to be right.  Dan and I and Lydia's dietitian believe it's soon. Stay tuned.

Breaking Up Is Hard To Do!

Down dooby doo down down
Comma, comma, down dooby doo down down
Comma, comma, down dooby doo down down
Breaking up is hard to do

Well, we've finally reached the stage in our lives where Lydia needs no in home healthcare nurses.  We probably reached it awhile ago but Mom and Dad still needed it.  It seemed drastic to rip the band-aid off something that we had known for so long.  We've slowly transitioned from 24/7 nursing care to 1 day a week and now none.

When Lydia came home from the hospital she had 24/7 home healthcare nursing.  The day nurse would report at 6am and the night nurse at 6pm.  Over the course the first year we transitioned down to day nursing and overnights, having the evenings and weekends to ourselves.  Once her trach was removed we transitioned to only daytime nursing hours while we were at work.  

When Lydia started preschool in August 2018 she still had 3 days at home with a nurse and over the fall and winter we've cut that back to one day a week.  I always get to a point where I just know it's time.  I've done that with each transition in Lydia's life.  There is a feeling.  Last night I had that feeling and I talked it over and knew.

Lydia will start attending preschool 4 days a week starting Monday, March 18.  We were waiting for April but I'm not sure why.  The band-aid is gone!  It's so freeing.  This will be the first time in 3 years and almost 9 months that we have not had nurses in our home.  No cars parked out front.  No reporting out in the morning and evening.  No paperwork to sign.  No basket full of binders and charts in the living room.  

Thank you so much to every nurse in the hospital and in our home that has cared for our sweet Lydia.  Especially our home healthcare nurses that were with us for a long time or a short while, you are part of Lydia's childhood and we will not forget your love and support.  Melinda, TJ, Barbie, Carolyn, Celia, Chelsea, Deb, Eunice, Fallon, Mark, Nora, Pat, Stacey. 

 

Big Girl Kind of Day

Sunday was a BIG day!  

We took the front off the crib and made a toddler bed!We are late to this game, as most children would have been climbing out of their cribs for months or years now.  Lydia is three and a half years old and has only climbed out 3 times.  With her low muscle tones and small size it's not easy for her.  So we just did it! She went to bed fairly easily and only woke up once last night. 

Lydia working at her desk.  Her work basically consists of crayons, markers and stickers.

AND WRITING HER NAME UNPROMPTED ALL BY HERSELF!

Goodbye, Friends

We had a pizza party Saturday night, the last night our neighbors would be living across the street.  They are moving out of state and we are terribly sad to see them go but happy for their opportunity.  

All day Sunday we'd look out the window and expect to see their truck or the smoker in the driveway.  Nope.  We kept expecting to see them outside playing in the sunshine.  Nope.

See you real soon, friends!

Things you may not think about, but I do.

Forms.  

Yes, basic forms.  

Signing Lydia up for school, gymnastics, school of religion.  

Forms.  

"While I’m pretty sure no parent looks forward to filling out forms, there’s one question that always gives me anxiety. When the question is asked on a preschool get-to-know-you form, it looks like this: “Medical information you should know about me…” It sounds like an easy question, right? For most, perhaps so. Not in this situation."

"How can I explain my daughter’s medical history on two lines?"

"I will try to stress the importance of her medical history without letting it overshadow who my daughter is — because she is not her medical history."

https://themighty.com/2015/08/how-to-explain-digeorge-syndrome-on-preschool-form/

Sometimes fear still wins.

"Somehow along the way, I have had to learn that vulnerability and strength go hand in hand when you are the parent of a child fighting a disease. I have gained strength by allowing myself to have those weak moments where I just had to let it all out to whoever was right there and willing to listen."

"I do my best every day to push past the fear and allow myself to look into her future. Our future, together as a family."

"I still fail… all the time."

"Sometimes fear still wins."

"But I keep trying over, and over, and over again to be the best mama I can be, during the most vulnerable time of my life."

https://themighty.com/2019/01/parent-congenital-heart-disease-vulnerability/

Medical Mama

She is tired, but not weak.

She has broken down, but still keeps pushing.

She has every detail of her baby’s life memorized, and unfortunately, that life has been full of more than just milestones.


She is a medical mama, and she’s proud of that fact, but no one will ever understand it unless they’ve lived it.


https://themighty.com/2018/12/who-is-medical-mama/#_=_

Style Icon

I'm not ready to write for you although there are things to write about.  We are all healthy and okay but it's just a heavy time for me currently.  I'll be back, maybe when the weather hits 50 degrees. :-)

In the meantime, please enjoy Lydia's raging style.  She's an icon.

        

       

She now asks to go to the mall so she can play with the washer and dryer at the American Girl store and ride the Kung Fu Panda merry-go-round.

She wastes ice cream.  I don't believe in that.