Welcome back to work!

What a Royal welcome back to work!  Perfect!

Thank you Tad, Dennis and the Antioch Team!

Tip-Toe Thru' The Tulips With Me, then we're off to Italy

Remember my post about Holland.  I hated Holland last night.  I hated tulips from Holland last night.  I hated tulips and windmills and clogs.  

We got rid of our Monday, Wednesday, Friday night nurse for multiple reasons and I didn't like the replacement they sent to meet me on Thursday.  So, I was the night nurse last night and it's not so bad, especially with Dan waking up to do some of the feedings.  I sleep on the couch and wake up every 3 hours to start a feed, every 2 hours after to turn the feed off and flush her g-tube, then wake up every time she coughs, needs suctioned or needs a diaper changed, and every time one of her alarms go off. Needless to say I got about 5 hours of sleep if you patch it all together, maybe.  

Last night all was good until 2:30 when the apnea monitor starting freaking out and I started looking at Facebook to bore myself to sleep.  Facebook at 3:00am is like drunken text messages at 3:00am.  Both should be avoided.  My Facebook feed was filled with Denver, Ireland, New York, Rome, San Francisco, Spain.  Everywhere but my living room, everywhere but Holland.  All I could think about was Holland.  No one voluntarily goes to Holland, so it seems.  I cried and had myself a little pity party on the couch.  

I vowed right then and there that when the time comes that Lydia is old enough to enjoy it, we are going to Italy.  She deserves Italy.  She deserves anywhere she wants to go.  And I'm going to do my best to get her there.  So, add another savings account to the bank because we need to get the girl through college, pay for a wedding someday and the biggest trip to Italy you have ever seen.  We may even stop by Holland on the way home.    

230 apnea alarm, she's fine
235 diaper check, change it
239 asleep, not really but I tried
245 feeding alarm goes off, time to get a bottle
250 time to measure and give her meds
256 apnea alarm, she's fine
258 suction her trach
302 Check Facebook - mistake!
305 Checking Facebook - tears!
307 apnea alarm, she's fine
310 refill humidifier water
314 asleep, not really but I tried
320 diaper check, change it
324 apnea alarm, she's fine
326 suction her trach
341 apnea alarm, she's fine
345 apnea alarm, she's fine
349 asleep, not really but I tried

“You'd find it easier to be bad than good if you had red hair."

“You'd find it easier to be bad than good if you had red hair," said Anne reproachfully. "People who haven't red hair don't know what trouble is.”

― L.M. Montgomery, Anne of Green Gables

Our baby is growing up

She's in big girl britches now!  Goodbye Newborn, hello Size 1.  Oh yeah!

Glow Saint Ella

A friend of mine from college, dear sweet Stacie, has fought every day since I met her for the American Cancer Society, the Red Cross and numerous other non-profits.  She has a huge heart and a family filled with love and laughter.  Her son, Cade, is battling cancer and fighting like a champ.  He's so strong and tough and is full of smiles each and every day.  While we were in the hospital I'd see Stacie's post about treatments and know she was only a floor or a tower or a few rooms away, and somehow it made me feel like I wasn't alone.  

A mutual friend introduced Annie and I on the day of Lydia's heart surgery.  Almost every day from June 25th to August 15th, Annie and I smiled and said hello.  We didn't chat, we didn't get to know one another and we didn't meet each other's children, but we had a routine.  I know we smiled through sad days and tears and some days we didn't want to make eye contact, but we did it anyway.  Every day I think about Annie and her family that is battling an ugly disease and wants to take their precious Jonah home.  Somehow having that small connection made me feel like I wasn't alone.

Through Annie, I learned about Ella.  A beautiful little girl fighting hard every day to beat cancer.  Today Ella was given her angel wings and is safe in God's arms.  My thoughts are with their family and I'm praying they can find comfort in the memories they made with their sweet little girl.  I can't begin to imagine the heart ache.

Lydia doesn't have the same struggles as Cade and Jonah, and I haven't become the same kind of medical mama that Annie and Stacie have.  I don't understand their terminology and treatments.  Lydia doesn't have the same doctors.  But I understand what it feels like to not be able to take away all the pain, to not be able go through the surgeries and procedures for them, to watch as they are poked time and again for IVs and blood draws, to sit and wait for a report from the operating room.  My prayers are for them, their families, and their sweet lil' ones that are the strongest people we've ever known.  They are our heroes.  

Nurse free is the way to be!

Today is the first day of reduced nursing hours.  We get 18 hours a day this week and then finally cut back to our 16 hours a day schedule next week.  However, I've cut so many hours this week I think we're closer to 16 already.  

It's been good and bad having 24 hour a day nursing for two weeks.  I must say, we've learned something from every nurse, even if the lesson was "I never want you back in my house again begin you're cray cray!" 

I've only "fired" 4 nurses out of 12 nurses that have visited.  One for asking way too many  easy questions that a 12 year baby sitter could answer.  One for leaving Lydia completely unattended for 4 smoking breaks and planning her wedding instead of charting.  One for being a complete worry wort that forgot her stethoscope, couldn't figure out the feeding pump, and called me honey 101 too many times.  One for being a legit scary person who didn't want me near my own child in a creepy 90s made for TV movie fashion.  

We have 8 nurses that we do like and would invite back into our home.  3 will be regular evening nurses.  2 will be regular daytime nurses.  3 will be back up in case of vacation, illness or unexpected absences.  Having people in my home forces me to talk and socialize because I refuse to be a rude hostess.  Let's just say this introvert needs to go to her room and shut her door from time to time.

So, today was Sunday Family Fun day because we cancelled our nursing!  It was the first time since being home that it's just been the 3 of us and we had it for 16 hours!  We snuggled all morning, had a few wardrobe changes because none of our Chiefs outfits fit, had a fun visit from the Summers Family, went for a walk around the neighborhood, and finished up with bath time.  It was a great day!

 

Mom, Dad and Lydia selfies

Ophthalmology & General Surgery

Lydia had two appointments on Tuesday, Ophthalmology and General Surgery.  Ophthalmology was just a follow up from her first exam in the hospital.  She nailed it!  Granted she had no letters to read, but she sure followed the light up toy around the room.  General Surgery was to change our her MIC-KEY button for the first time, that's her feeding tube port.  She handled it like a boss and mom changed her button.  

Okay, so the appointments themselves went well, the circus surrounding them was tiring.  

We left at 9:15 and once we got moving Lydia fell asleep.  Next we get to the Broadway Clinic, load up Lydia and the stroller and get checked in 15 minutes early.  10:30, appointment time, rolls around and nothing.  10:45.  11:00.  Finally we are called back, the tech does an initial screen and dilates her eyes.  Now we wait 30 minutes.  I let them know that we needed to leave by 12 or 12:15 at the latest because we have an appointment at 1:00 at the South Clinic.  No problem, they'll hurry us along.  

We wait, starting at 11:15.  11:30.  11:45. 12.  I'm mad now and I'm beating myself up because I remembered EVERYTHING except her formula.  Doh!  Girl is hungry.  I sternly tell the receptionist I'm leaving because my kid needs food and we have another appointment.  If the doctor was on time I could have made it home to grab a bottle and then head to South.  Then a nurse walks by and the receptionist flags her down.  I repeat myself.  Bless her heart.  She orders up formula from the primary care clinic and calls South to let them know it's their fault, not mine, that we will arrive very late.  South agrees to see us first thing when we arrive.  

We finally get called back at 12:30 and the very nonchalant doctor walks in around.  I'm not smiling.  We proceed.  She needs more dilation drops and another 15 minutes.  You're kidding, right?  No.  I look at her and say, please tell me you agree that it's quite ridiculous that I am still at the eye doctor for a infant exam after 2 hours and we're not done yet.

There is a time to apologize for poor service and this would have been one of them.  And she finally did.  Then we all made up and posed for a Lydia's 1st Eye Doctor appointment!  Didn't even get to point out to her our 6 degrees of separation, actually more like 3.  Oh well. 

So, Lydia did great, we hauled all her stuff around just fine, and she did pretty good without her humidifier all day.  Yes, I was ticked because my schedule was messed with and I was late to something.  I hate that.  Yes, I'm learning mommy lessons but I never said I was handling it well.  I will not let the nurses make our appointments for me again.  Period.

Aren't you glad you read my blog to pick your spirits up today?  

Trach babies can

Trach babies can sleep with their nose in the blankets.  

So, we've got that going for us. 

Good Snuggles

So this happened...

I couldn't help myself!  Ghost for Halloween and a lil' gobbler!

Want to see something cute?

Now that we are home...here are the rules.

We are all home and getting settled in to our new life under one roof.  As you can imagine, we have a lot to learn about being parents at home, even with 24 hour nursing care.  Lydia has several special things that make her care unique.  She is trached so she has monitors and equipment for that.  Lydia has a feeding tube and Mic-Key button so her feedings are a little unique and take special attention.  Lydia's immune system may also be weakened and she is adjusting to new germs, so we won't be risking a lot of visitors.  Aside from all that, we need to adjust to having an 11 week old at home!

We want people to be able to visit Lydia and meet her for the first time.  She has a lot of family and friends waiting to greet her!  We're also anxious to see all the people we've been missing for the last 2.5 months.  Here are a few rules we've established to give us some time to adjust to life at home and to protect Lydia.

1.For at least the first two weeks we ask for no visitors other than scheduled visits by our parents and immediate family & friends.

2. For at least the first month we ask for no unannounced visitors.  Please just talk to one of us to find a good time to visit.  We love the company, if you don't mind a crowd!  We'll limit ourselves to one visit a day, on days we have plenty of time and no appointments.

3. We ask that any visitor be illness free.  If you or someone in your household has not felt well or been ill in the previous 48 hours, please wait to visit until you are well.  This includes allergies, just in case it turns out to not be allergies.  

4. You will be asked to wash your hands before being around Lydia.  We're so used to the hand sanitizer rules at the hospital and that is a hard habit to break.  We are especially cautious with her trach and it's easy for her to catch things.

5. We would love it if you and those in your household were up to date on your vaccinations.

We appreciate your support, offers of help and enthusiasm to meet Lydia.  Please remember that with Dan working the last 10 weeks and me going back part time for awhile, we have had very little time together as a family.  We need some of that, then we'll be happy to share the