"Operation Hot Mother"

"Let's try to top that."

Let's be honest.

I have never had to lose weight. Well, not like this anyway.

When I was pregnant, I never gave much thought to my weight. Here's why:

• For the first three and a half months I was sick. I would throw-up every morning, sometimes three times, before making it to work at 6:45am. So, consequently, I would eat whatever didn't make me vomit (TMI).
• After that phase, I was mentally preparing for open fetal surgery. Weight wasn't really a concern for me all of a sudden. Actually, most everything in my life took a back seat suddenly.
• I was on bed-rest for the reminder of my pregnancy. And in the hospital. And lonely. And depressed. And those factors combined, make you feel like a milkshake for every meal is the only way to cope.

Thinking back to those hospital days, I realize that all of my muscle quickly deteriorated. My glutes and leg muscles were all but gone by the time I was discharged. And replaced with fat.

Although I believe in the power of positive thinking, it didn't really work in this situation. "When I'm not on bed-rest and can walk again, it will come off." Nope. "Oh, if I nurse that will take it off." That didn't work out either. "If I just eat less and go for walks with the stroller . . ." Nada.

When I came home from being in Utah for 3 weeks I had actually gained weight. GAINED! And to add insult to injury, Casey had been trail running with all of his free time and had lost a few pounds. And so had the dog.

THE DOG HAD LOST WEIGHT. I hate her so much sometimes.

And so, I have resorted--no, sunken to a new low. I have come to the conclusion that I must . . . run.

I hate running. A lot. I don't get a runners kick. I get bored. And it hurts. My pelvis shifted after surgery and even walking too much makes my hips hurt like the 30-year-old woman that I am.

But I refuse to buy a new wardrobe. And I am tired of being uncomfortable in clothes that are too tight.

Yesterday I went for my first run by myself. I ran as long as I could before the lungs burned and the hips hurt.

4 minutes.

And I swear Piper was laughing at me the whole time I pushed the stroller. "What is that panting noise you are making, mom?"

And so we start another, long, hard journey: Return the muscle that once was there and run more than 4 minutes.

Land-locked

"If you have any extra wood, bring it to our house. We are building an ark."

This was the Facebook post of a friend of mine this past week. The flooding here has been crazy.

The damage the rain has done is unbelievable. Roads are literally washed away from raging rivers. Towns are under water. People have died.  This is so crazy.

We were supposed to have a follow up appointment in Denver for Piper's surgery last Friday.  We ended up calling to cancel because so many roads were closed due to flooding... Including the freeway. The freeway! It was flooded. You know it's bad when the freeway is under water. We spent Friday in our house because it was advised that if we didn't need to drive anywhere we shouldn't Casey couldn't make it to work because all the roads were flooded. His worked sent out mass emails cancelling work so he stayed home with us.

All weekend and this week we have heard helicopters flying over head. They are taking supplies and evacuating people (from what I am guessing) to the hard-hit canyon towns where their only road out has been washed away. It sounds like a war zone.

Instead of posting pictures of all the crazy flooding, I'll just let my friend Kylee do the work on her blog. She did a pretty good job collecting pictures and videos. Thanks Kylee.

We were able to make it to Denver on Monday and Piper's shunt looks great. No sign of hemorrhaging in her brain (her neurosurgeon was concerned this might happen because her ventricles were so large-he thought they might collapse after the shunt was put in). She had her 3rd MRI and her ventricles have gotten smaller. Hooray.

Although she is still hesitant to lay on her shunt, we are getting back to our physical therapy routine of tummy time, tracking objects and neck strengthening routines. We work hard and sometimes she tires out while on her play mat. I think this is her telling me she has had enough.

 

Shunt Surgery

WARNING: This post has surgery photos.

WE survived the surgery. (I say "we" since I felt I had a big part in this too)

After 3 attempts to draw blood on Wednesday. She was not happy about it.

The neurosurgeon came out about an hour and half after she went back to tell us that the surgery went well and she was being brought out of anesthesia. We were able to see her in the recovery room as soon as she was awake and determined stable.

Coming out of anesthesia

That was rough.  She looked so drugged and had such a raspy voice from the breathing tube she had down her throat during surgery. She had x-rays to check the shunt and she cried such a sad cry. But we survived.

She was transferred to a room on the on the neurosurgery recovery floor where we would spend the night together. It was a room very similar to her NICU room from a few months ago when we spent a whole month there.

It gave me a little anxiety to be there, again. Those were rough days, I tell ya.

She was very sleepy all day and night but of course no one gets to sleep at a hospital. She (we) was woken up every couple of hours for meds, cathing, and vitals.

Her IV arm.

The hard part about this surgery is figuring out how to hold her. Since she can't lift her head it needs to be supported but the slightest bump of her incision/shunt valve and she is sent into pain. She also has an incision on her tummy which needs to be avoided too. This has proven to be really tricky.

Her incision and shunt valve (the bump under her skin)

Smiles the morning after surgery.

The ride home was tricky and we had to pull over twice. As Piper get tired, she likes to turn her head to her right side, which would cause her to scream with pain when she felt pressure on her incision. It was a long ride home.

So happy to be going home.

Although she is in pain and we struggle with things like holding, feeding and diaper changes, we can already tell a difference in our little Piper. Her head as shrunken noticeably in size, she stares at objects for long periods of time now and can track objects with her eyes upward. Just yesterday we read a book and she stared at the pictures for almost 15 minutes. Her soft spot, which used to be "full" is now sunken in and we can feel her skull again. We feel like this was the best thing for Piper.

I promise, her head is smaller.

We really are so touched by all the kind words and love we have been given through this. It is humbling to know how much support we have behind our little family.

Just for kicks, her spinal repair. This girl has some serious battle wounds.

And so we wait....

We made it to surgery day.  And now I am sitting in the lobby, staring at a screen that says patient number 130918 is "Intra-op."

After meeting with the nurse practitioner yesterday I had a sense of ease. She reassured me that this was a routine procedure and explained to me in great detail how the operation works and how a shunt works. I felt more confident that this is what is best for Piper

What did NOT reassure me was when the lab technician needed to draw some blood from Piper, and couldn't! He called in another tech who then called in "the boss" (they really called her that), who then called in a colleague. There were four adults and me in the room trying to get her blood samples.  It took them three attempts- one in each arm and one hand before they got what they needed. piper was not happy.

Today, we had the same problem when they tried to put in an IV. Two more pokes before they got it. This poor girl has my veins. When I was in the hospital I had so many IV attempts and failures that my arms were constantly bruised and I have scars on my hands and arms. The nurses were so impressed with her pleasant disposition despite her troubles. She's such a happy girl.

Piper must have known something was happening today because she woke up last night at 2 am. I held her until 4 and gave her a bottle since that was the last time she would be able to eat. As tired as we both were, it was peaceful holding her in the quiet hours of the morning.

I had the quiet thoughts of "Heavenly Father, are you really there? And do you hear and answer every child's prayer?"

And so we wait.

Surgery, round two

On Monday, August 26th we met with Piper's neurosurgeon for another MRI. After reviewing the results, her neurosurgeon recommended Piper get a shunt placed in her head.

When we were considering wether or not to do fetal surgery, we were told that most children with Spina bifida need shunts to control hydrocephalus. This is common with the spinal fluid leaking during development. We were also told that there was a very small chance that with the surgery she might not need a shunt.

However, only a few days after our surgery we saw her ventricles in her brain begin to enlarge. We were hoping they would stabilize.

Piper began to have weekly head ultrasounds as soon as she was born. As her head continued to grow, her ventricles remained the same; enlarged but stable. She had her first MRI three weeks after coming home from the NICU. Her neurosurgeon was pleased and said we would just monitor her head growth.

The problem with being Piper's mother is that I see her everyday. I guess that's actually a good thing but that also means it is hard to notice the subtle differences that are happening. Like how her head has been growing larger and larger.

She has always struggled to hold her head up on her own. Tummy time is crucial around here because she is fighting a losing battle. Her neck muscles can't keep up with her head growth.  There are days when I see her struggle to lift her head, but she can clear her face while on her tummy. But then it seems like the next day she can't even lift her chin off her chest.

At her Spinal Defect Clinic on August 6th, the nurse measured her head. It was off the charts, literally. She wasn't even in a percentile for head size. The nurse measured her had again. Then she measured mine . . . then Casey's. She was asked if Piper was having a hard time tracking items with her eyes. We confirmed that she was. We then scheduled a follow up appointment with her neurosurgeon.

A trip to her optomologist (this girl has more doctors than I have had in my entire life) confirmed that she was delayed in her tracking. Although he did not see any a pressure on her optic nerve, she was definitely delayed, even for her adjusted age.

Piper's physical therapist commented that her head was looking bigger between our appointments which are only two weeks apart. So it wasn't really a surprise when the neurosurgeon told us it wasn't a matter of "if" she'll need a shunt, but a matter of when.

To be quite honest, I can't help but feel disappointed. While I know that a shunt is not the end of the world for us, I feel that Piper has already been through so much. When she was in the NICU, I remember telling her, "You won't remember this, I promise." It was rough to see her in a mask, hooked up to machines, feeding tube down her nose, and IVs in her arms. And that was when she didn't do anything but sleep. Now I think about my happy, smiling baby having to go through surgery again, and it breaks my heart. I'm sure there will be more crying from me than there will from Piper. And even though I'm sure she won't remember this either, I hope I will get through it.

We head down to Denver on Wednesday for lab work and to meet with the nurse practitioner. We will stay in Denver and her surgery is scheduled for Thursday, Sept. 5 at 11 am. If all goes well (and please pray that is does) we will be discharged Friday.

And once again I will tell Piper that she is tough as nails. Because she has to be. We both do.

Erratic

er'rat'tic adjective
1. characterized by lack of consistency, regularity, or uniformity
2. deviating from what is ordinary

Example:

Piper's sleeping is erratic.

We are struggling with sleep. Precious, precious sleep.

When we went home in July, it was because I needed help. Piper's sleeping was all over the place. Then, the second night we were in Utah, she slept through the night. We thought it was a fluke. We though she must be sick. But she kept it up.

But, don't be fooled. She is not a good sleeper.

20 minute cat naps are her favorite during the day. Waking up every 45 minutes from 6 pm to 11:30 pm is her specialty. It is still rough. What makes it so frustrating is when something works . . . once, and then it never works again.

For example: the following are tricks we though were "it."

First day home from the NICU, "She's such a great sleeper."

The bouncer. "She'll grow into it."

The swaddle, car seat insert and swing. "I'm getting desperate."

Our bed. "I'll never judge another mother again."

Crib, wedged in between blanket rolls.

Car seat. "Maybe she just wants a friend to hold."

Unfortunately, none of these have lasting results. She changes her sleeping preference every day, just to keep us on our toes. Only one trick has worked consistently--holding her in my arms for hours while she sleeps.

However, on those mornings after she has gotten good sleep, she is such a joy to wake up.

We'll keep her. But we may start sedating her.