A Merry(er) Christmas

While on our way home for the Christmas holiday, I reflected on last Christmas and it made me remember what a different feeling we had at Christmas last year.

Friday, December 21, 2012. I had just completed my first semester teaching high school. It was hard. It was tiring. It was emotionally draining. I was looking forward to having a long and relaxing break before heading back in January.

Also, I was looking forward to finding out what the gender of our baby was going to be as I was meeting Casey at the doctors office for our 20 week ultrasound.

I remember having the thought "I can do hard things" run through my head as we were waiting for the ultrasound. At the time I thought it was because I had just survived what felt like my first semester of teaching all over again. But then our midwife entered the room after what felt like a suspicious amount of time, and said, "this is dr. Kozack. She is going to go over your ultrasound findings with you." I now realize that feeling meant more.

There were a few people who knew we were having our ultrasound that day. I remember not answering phone calls or returning text messages. Not knowing what just happened or what to say.

But when I finally called my parents, it just came out. "It's a girl. And she's not ok."

And that was all I knew to say so I began to sob.

I often think back to that first conversation; the first time we had to tell someone about Piper's diagnosis. And those words still bring me to tears. Even for months after she was born I would hear those words "she's not ok" in my head and begin to sob.

And now, a year after that day we found out Piper had Spina bifida, I can look back on that day and realize that she is ok.

We were given the option to abort the pregnancy when we discussed our options. We didn't feel that this would warrant an abortion. She was healthy in every other aspect besides her spinal cord not closing. And she was our baby.

Today we've had MRI's and shunts. We have lots of doctors appointments and physical and occupational therapy. We catheterize and massage. We talk poop on a daily basis. But we're doing ok.

If I could change things, would I? Yes. I would make Piper perfect. I would take away her challenges and scars and let her have a life without surgeries and catheters and therapies. I would give her very advantage I could.

But, if I had to go back and do it all again, knowing what I know now, would I? Absolutely. Because Piper is more than ok. She is amazing. And I can't imagine loving her any more than I already do.

And this Christmas I am so grateful that I have Piper in my life. I am so happy that we get to celebrate her life everyday. And even though there are hardships and life isn't easy, we can do hard things and we are grateful. So very grateful.

Merry Christmas.

Just a Picture Dump

And here is a slew of pictures I have on my phone ready to be dumped somewhere.

I took piper on a quick jog one morning. It was really cold so we pulled out this Halloween costume my mom sent us. Piper was happy as a clam . . . until we went outside.

Piper gets all of her from cousin Stella and cousin Ruby. Thank goodness someone in the family is willing to buy the cutest clothes at Baby Gap because I just can't bring myself to.

We had the pleasure of hosting our California friends Jon and Diana for a few days. It was crazy having a 3-month-old, 7-month-old and a 2-year-old in the house but it was so fun and so nice having another adult (who gets it) to converse with during the day.

Mountain biking two at a time, while the other two parents stayed back with two babies, one toddler and a dog.

The Browning family- we like to wear out our guests.

Just trying to keep everyone happy.

Casey, looking extra hobo-ish on this particular night.

Sleeping through our morning stroll

 It was super windy one day and we happened to drive past a parking lot right after this happened! It smashed three cars, including one as it was pulling into the parking lot.

Coming up next . . . solid foods. How exciting.

Halloween

After our first race, I was extremely sore, as it was my first race and the most I have ever run . . . ever . . in my life. Really. Later that night as I was explaining to our friends where I was sore, Casey informed me that while I was "running" and he was walking next to me, he noticed I shuffle while I run. Like an 80 year old woman trying to run. My mom told me I shuffled right after fetal surgery and apparently that habit stuck with me.

Casey decided to try another run to see how fast he could run without a decrepit woman slowing him down. He ran a 4-mile race right before Halloween for an animal shelter fundraiser, along with our friend Chelsey. People were encouraged to dress-up and run with pets. Casey did neither but we went to support him anyway.

He was right at the beginning of the line.

The Enthusiastic crowd.

Casey came in at 35 minutes!

Chelsey came in strong a few minutes after Casey

Piper was very proud (and rather chipper on that cold morning).

Two days before Halloween I noticed two white bumps in Pipers mouth . . .which explained a lot actually. I had no idea she was even teething until I saw the teeth. Seems a bit unfair that someone who is so far behind developmentally gets teeth so early (she was only 5 months adjusted age).

While we haven't seen any more pop up, I suspect there are more on their way . . .

On Halloween I dressed Piper up as a mouse for two reasons. 1) Since we weren't going trick or treating, I didn't really see a point in buying or making Piper a costume. 2) But since I don't want Piper to think that her mother didn't love her, I decided to do a very simple costume consisting of things we already had. I stuck some felt ears onto one of her headbands and put her in some grey clothes she had.  I dressed up like a cat but due to the aforementioned teeth, by the time I was ready in costume Piper was melting down and ready for bed. No cute family photo with everyone in coordinated costumes . . . maybe next year.

Halloween night- ruined by teeth.

We had a Halloween party at our house with the Hatchs and the Vincents. For great pictures and a great recap, visit Kylee's blog (she's amazing at keeping up on her blog). Piper slept through the whole party like a champ. The next day, we did Halloween pictures, take 2.

Here's to trying again next year.

And . . . We're back!

Kind of a short hiatus there, but we still live.

In a new house, actually. We took a break from documenting our nothing-going-ons because we actually had something going on. We bought a house! It was not a fun experience and a rather emotional roller-coaster, but we survived (and learned a great deal in the process). Since then, we've been unpacking what feels like an endless supply of boxes, painting everything, hosting guests and adding more to our home to-do list than crossing items off.

A few things that happened in the process.

I ran my first race at the beginning of October. It was all due to peer pressure. It was only 4 miles but I ran it and met my goal of running it in under 45 minutes. I came in at a comfortable 43:26. I was actually pretty proud of this since Piper had decided to get up at 4am that morning so I was running on 5 hours of sleep. Also, when we were walking back to our car we heard them announce my name as a winner. I took third place in my age group! I'm pretty sure there were only 3 people between 30 and 35 but I shouted "I won!" over and over anyway. I owe it all to Casey, who ran next to me the whole time and gave me support and encouragement by saying things like "Just run as fast as you can" and "Just don't stop." Casey won first place in his age group (we are not sure how many people were in his group).

It was a freezing 32 degrees that morning!

After that, we packed up our apartment and moved. We had to drive the U-haul to closing because we had to be out of our apartment THAT DAY. It was rather chaotic but we survived.

With all of Piper's stuff packed, we had to improvise for the freezing temperatures.

 Piper and Miles watching me clean our apartment

 

Chelsey watching the babes while I finished cleaning

 We said goodbye to Fort Collins and moved to our new home in Loveland. And everyone is happy about it. Especially Piper who got to sleep on our bed for a number of naps while we unpacked .

6 Months . . . sort of.

Alright! ALRIGHT!

Someone keeps checking this blog. . . like daily. Which makes me feel bad that I haven't posted anything. But I don't really feel like we have much going on worth sharing . . .

Angie and Wendy, I'm looking in your direction.

Anyway, Piper turned 6 months on Monday! That's half a year we have conquered! For as long as it has felt, I still can't believe it has been 6 months already. Is that possible?

To celebrate, we had her 4 month check-up with her pediatrician. Apparently it is MY responsibility to make follow-up appointments with her pediatrician?! Well, I wasn't aware that she was supposed to have an appointment  at 2, 4 and 6 months and since we have been to Children's Hospital in Denver 5 times in the past two months, her pediatrician is the last person on my mind.

Also, I kind of hate my pediatrician's office. There are 15 doctors in the office and I have only met her "pediatrician" once, two days after she was discharged from the NICU. This last visit was not encouraging.

Nurse: "So, does she have plenty of wet diapers?"
Me: "She doesn't have any. We cath her every 4 hours."
Nurse: "Oh. Right."

It was not encouraging. The doctor was the same way, changing her mind a number of times during our conversation. Also, I wish someone would have told me I could give her Tylenol becuase after 4 shots, she was a pretty sad baby for 24 hours afterwards.

As far as Piper's development goes, we are making progress. To be quite honest, it is slow and hard. It's especially hard to see babies her age (and younger) do things she should be able to do. It makes me cry to think that she has to work so hard to do such simple things, like holding up her head, and that her road ahead of her is unknown and will be challenging. I have to remind myself that she is only 4 months adjusted and her spina bifida sets her back as well. So really she's only 1 month adjusted. In that case we are doing great! She almost has her head control and can clear her face from side to side on her tummy (we have been working on this for 4 months). She is smiley and talkative and loves to look at books and Casey's iPad when he is on duty.

I attempted to do a 6 month photo shoot. It didn't work. I wish I was one of those moms who takes a picture of their child every month holding a sign with their age. But I'm not. So here are the few pictures I have of her that will have to suffice.

Apparently bath time was a little too relaxing. Didn't quite make it into pajamas.

She actually fell asleep while I was cathing her!

This is the closest thing either of us has to a velour track suit for running.

My attempt at a 6 month photo shoot. Fail.

Dad's on duty Sunday mornings. Nothing says "good parenting" better than watching Simpsons on the iPad in bed.

Dang girl. You've got it going on.

Aaaaand, if you have made it this far, I think I need to start making my posts shorter. I have been toying with the idea of sending out birth announcements . . . 6 months later. Is that lame? Probably. But if you would like one, give me your address either in a comment or email me (almostwright@gmail.com). Or you might just get one anyway.

"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.