The boxes on the porch did not contain anything exciting...
...unless you're Jason.
He got a bunch of work stuff and I got a bunch of Emily stuff...
...formula, bags for her feeding pump, syringes, etc. etc.
I should probably redefine what exciting is, as shipments from home health care are on the monthly calendar for eternity.
I'll satisfy your curiosity though, and give you a sneak peek into the changes I made with my bedroom.
I had to order the quilt and it's going to take forever to arrive.
And the bedside tables are currently being painted.
I expect a text any time telling me they are done.
The yellow pillow and the one with the blue flower are just a sample of the pillows I'm going to use and the quilted piece of material is actually one of the pillow shams, but the quilt will look the same.
(No matter how I tried, I could not totally fall in love with the other bedding. This bedding is much more 'me'.)
Does that satisfy your curiosity for a little while longer?
My sister and I have an arrangement.
I tell her the things she needs to buy that she can't live without, and she feeds me.
As I told her last night of the latest 'you can't live without this' I realized that maybe you need to know the things you can't live without as well.
Is this true?
This is why you have me.
To make your life better.
Starting ... sometime ... I am going to write about the things you need in your life to make it better.
-Emily wakes up
-mix formula for the day
-change out Emily's feeding bag, tube, etc
-do a load or two of laundry
-clean up whatever Em doesn't keep down
-give Em a bath
-change out gauze on Emily's feeding tube
-get Em dressed for the day
-if I'm lucky Em might take a nap
-sometimes I get a shower
-pack up Em's diaper bag
-give Emily her meds through her tube
-work with Em on physical therapy
-run any errands I might need to, both for work and for me
-head to work
-try to work while Em plays
-take Em for a walk while she winds down
-Em finally takes a decent nap
-I have about an hour or two to get as much work done as I can
-pack up and head for home
-run any errands that I need to
-get Em ready for bed
-change feeding tube gauze
-play with Emily
-give meds through tube
-Em is finally ready for bed
-snuggle in the rocking chair until Em falls asleep
-a load of laundry if I'm lucky
-mix more formula
-find something to eat for dinner
-pull out computer and work for two or three hours
-start Em's overnight feed
And then, hopefully, I can crawl into bed.
* * * * *
Emily's occupational therapist, who helps with feeding issues, came today.
I've been telling her for a couple of weeks that Emily is getting worse, not better, when it comes to being interested in food.
The OT tried to feed Emily and after 15 minutes of fighting with Emily she looked at me and said, "She won't eat anything will she?"
And then she said to me, "What did you eat for dinner last night?"
I told her I ate a bowl of cereal.
"What do you have in your fridge that we can give Em?"
I haven't been grocery shopping in weeks.
"Does Emily sit at the table with you and Jason when you sit down for dinner at night?"
We don't sit down for dinner at night.
We rarely even eat at the same time.
"Are you increasing her feeds as fast as we've talked about?"
I'm going more slowly than the therapist would like...if I push Em too fast her tummy doesn't do too well.
"Until you can feed her a feed in 15 minutes she won't ever eat well."
"You need to find food that Emily gets excited about. Make pasta and let her taste the sauce."
"You need to get to the point where you don't feed Emily at night. She won't ever eat until you do that."
About 20 minutes after the OT left I got a phone call from another therapist.
"Noelle? Emily's OT tells me that Emily needs help in other aspects of her development. I'll be coming next week to do an evaluation and tell you where I think Emily is lacking, and what help she needs."
I hung up the phone and cried all the way to work.
* * * * *
A friend of mine has been pushing me for weeks to get together.
I finally found a time where I could fit it in and I texted her and told her I would leave work early and come and visit her.
She offered to feed me dinner and then sent me another text:
"Can you please bring that dessert my kids love?"
That dessert takes me three hours to make.
I haven't made it since Emily was born.
I waited a little while and texted my friend back and told her that I wouldn't be able to make it to dinner after all.
* * * * *
There's a line in the movie Return To Me that I love.
A girl who had a recent heart transplant found out that her new heart came from her boyfriend's deceased wife.
In tears she yells out to her friend, "What was God thinking???"
I sat on the floor of my sister's office today and cried and cried to my mom and asked her the same question.
"What was God thinking? I can't do this. I'm failing Emily."
Although it wasn't at all intentional, Em's OT made me feel like it was my fault entirely that Emily isn't eating.
On any given day I feel like I'm failing at most things in my life: my job, and my role as a wife and a friend.
I try really really really hard not to blame myself for Emily's not being able to eat.
I try to tell myself that Em will develop as she develops, and that no matter what, it will be okay.
But today ... today ... if you were to tell me Emily's heart defect and chromosomal deletion are my fault, I would believe it.
I'm grateful that every day isn't today.
* * * * *
Em and her bunny and I watched American Idol for a little while tonight.
Em loves American Idol almost as much as she loves Mickey Mouse Clubhouse.
If you drive down Main Street in the small town of my childhood, you'll see a little store nestled amongst trees that were full grown when I was just a girl.
Those trees house painted chandeliers that are for sell.
The store calls itself a boutique and lunch time bistro.
They offer a selection of four sandwiches, and then cupcakes and other goodies for dessert.
It's a very girly girl kind of place.
This afternoon I stopped next door to the boutique to pick up a picture I had printed and as I was getting back in my car I noticed three men sitting at one of the tables in front of the boutique.
They each had a drink and as far as I can tell, they were just passing the time talking.
These three men were manly men...
One of them was even wearing a bandanna around his head, and would have looked at home on a Harley.
I did a double take and would have taken a picture because they seemed so out of place, but one of the men watched me the whole time I was getting in my car and backing out.
I smiled as I drove away...
...both because of the scene and because maybe I'm still check-out-able.
I walked with an older lady to her car yesterday.
She had purchased some plants and I carried them for her.
"I will have to see if I can move some things to make room for these," she said as she opened her trunk.
She had two cases of vanilla Ensure and a case of canned juice.
"I'll take care of it," I told her.
And while I rearranged the things in her trunk she told me about her son.
How he only had just a little bit of time to help her, and so she didn't ask him to help carry the groceries into the house.
"Maybe someone will take pity on me," she said, "and help me carry these into the house. Or I can always wait until Tuesday when the nurse comes."
"But what if you get thirsty between now and Tuesday?" I asked.
She laughed and told me not to worry. She had plenty already in the house to last that long.
"My husband is home," she said. "He's on hospice. He's really sick."
"And you take care of him?" I asked.
When she nodded yes I told her that she was a good wife and she shook her head.
"No, he's the good one. He's taken care of me my whole life. It's the least I can do."
* * * * * * *
A young girl, maybe 4 or 5, sat quietly on a cart filled with plants, waiting for her mom to check out.
All of a sudden she looked up at her mom and said, "Mom I just love you so much!"
* * * * * * *
A man came to the counter with a peach tree on his cart.
"One peachy peach please," he said.
"Coming right up," I replied.
"One awesome Mother's Day gift," he said.
"One awesome Mother's Day gift with a really sappy card right?" I casually hinted.
* * * * * * *
A white haired man said to his equally white haired wife, "Babe hand me the car keys."
"Did you just call her babe?" I asked.
"I did. She's been babe since the day we got married 53 years ago," he told me.
"That may be the sweetest thing I've heard all day," I told him.
* * * * * * *
A husband said to his wife, "The thing I really wanted to get you for Mother's Day didn't work out. I just didn't have enough time..."
And as he was about to explain more the wife interrupted him and said, "These plants are all I need. Thank you for the wonderful Mother's Day gift."
* * * * * * *
As a lady walked away from the counter she said to my sister, "Happy Mother's Day."
I helped her carry her things to her car and she said to me, "I probably shouldn't say that. I would never want to hurt someone who doesn't have kids."
And then she told me about her two daughters-in-law who are both struggling to have children of their own.
* * * * * * *
I heard the news last night of a family member who found out she was pregnant.
15 years after she was told she would never have children.
* * * * * * *
Life is full of examples, both good and bad.
I am grateful to the good examples in my life, both of friends and strangers, who teach me every day what it means to be a wife and mother.
Not a day goes by that someone doesn't say something like this to me:
"I read your blog but you left ______ out" and then they ask me questions about Emily.
I love that people care about my baby girl.
If you don't mind, I thought I'd answer the most common questions I get, and hopefully you will all feel up to speed on this 3-days-away-from-9-months-old little lady.
Does Emily sleep through the night?
Yes she does, and she has done since she was just a few months old.
As far as we know, Emily is never hungry, and it's usually hunger that wakes a baby in the night.
It's me that has the problem sleeping through the night.
I wake up at least twice a night to check on the little lady, and I usually have to move her back to the top of her bed.
She's a mover and a shaker, and the length of her feeding tube is long enough that Emily could easily get tangled in it, and she has, and so I go in to make sure all is well.
Will Emily ever eat by mouth?
We truly hope so.
I jokingly tell people that we hope Emily is eating by the time she goes to her senior prom.
Our real life goal is to no longer need the feeding tube by the time Emily is two.
I'm learning that feeding issues are really misunderstood.
I can't tell you how many times people suggest that I just need let her get hungry...that I need to stop using the tube...if Emily gets hungry enough she will eat.
Everyone has good intentions...I believe that.
My sister once said something about a feeding tube being the easy way out.
She was teasing, but I burst into tears.
No one wants their baby to live with a tube sticking out of their stomach.
And I can guarantee that if I could feed my baby the normal way, I would.
It's a sensitive subject for me.
We have a therapist who comes to the house once a week to work with Emily.
How is Emily's health?
She's doing great.
Really and truly.
(Minus throwing up every day between 9:00 and 10:30am but even that isn't causing her problems.)
Emily's heart is fixed for now, and although we will have regular follow-up visits with her cardiologist, we don't anticipate the need for another open heart surgery for several years.
She may need a cardiac catheter sometime before then, to widen her left pulmonary artery that is starting to narrow again.
They have ballooned it open in two of her three heart surgeries, and may need to do it again when she's a little bit older.
Do you see any problems so far in relation to her chromosome deletion?
Emily's throwing up is probably because of 22q (the short name for the chromosome deletion).
Her inability to eat may be because of 22q.
Other than that, right now, we don't see any other problems.
Emily is a little bit delayed in her gross motor skills (rolling over, sitting, etc) but is advanced in her fine motor skills, and has been for a long time.
And no one can say for certain if the 22q is the cause for her developmental delays.
Children who spend as much time in the hospital as Emily did are usually delayed.
In the immediate future we will watch to make sure her speech is progressing.
There are a lot of other little quirky things that are probably because of 22q, but none of them have any impact on the way our little lady is developing right now, and so I try really hard not to focus on them.
This is another sensitive topic for me.
I'm not at peace with her chromosome deletion...not completely...and I feel like an awful person because of those feelings.
Why does Emily need a helmet?
Her head was flat...really flat...on the back and left side.
Her ears were uneven because of the extreme flatness.
The last time we went in to have her measured they measured it three times because they didn't believe it had changed as much as it has.
God must have a lot of trust in you and Jason to send Emily to you.
If there is one thing I know for certain...one thing I know that Jason and I will always get right, where Emily is concerned...
We love our little girl and that love will get us through whatever we have to face.
Jason and I both get emotional at the thought of what would have happened if Emily had been sent to another home...to other parents...
We're grateful she's with us because we know our little lady will never lack for the one thing all of us need more than anything else.