Monday, December 23, 2013

How To Feel

My daughter, Mallory, just celebrated her half birthday.  Never in my life has six months felt like such a short period of time.  I feel like it was just yesterday we were able to bring her home from the hospital.  And contributing to the quick feeling of time passing was the urgency at which we whisked her out of that hospital.  I look back at this email I sent in August:

"Hello Cindy,

I tried to get in touch with you late yesterday, but I figured you'd probably already gone for the day.  So, I just wanted to email you to give you kind of the run down of what it is we'd like to talk about.

What it comes down to is that we really want Mallory discharged.  We've been ready for her for a long time.  You guys have done a great job as a team teaching us and encouraging us that we can do this.  We've seen her at her best and her worst and have a very good understanding of what to expect from her and how to help her when she needs it.  You've provided us with every resource and support possible to help us take care of her and take care of the equipment required to take care of her.  Every test possible has been done to verify her health and I think there really isn't much more that can be done for her in the PICU right now other than to send her home and let her be with her family.  Mallory is who she is going to be and now she needs to be that at home.

I saw it on your face the other day.  I've seen it on the faces of everyone I talk to there.  Everyone wants to see our little girl come home.  And despite her set back on the 16th we are now advocating for her to get her home quickly.  I spent all day and night on the 15th and all day and night on the 16th with her.  I helped bag her when she had her episodes.  We've completed every task on the check list.  I don't know how much more we can prove ourselves capable of being her parents than that.  If the independent care is not absolutely required for her to come home, I believe our performance thus far should have proven ourselves very independent (just ask Mallory's day nurse on the 23rd how well we did with her trach change... he was surprised).  There are a few I's to dot and T's to cross but we are ready.  The hardest parts we have down pat and that's bagging a baby who doesn't want to breath and changing out that trach.  I even did an emergency change out on the 16th.  I can see making sure we know how to hook up and set up her equipment properly but you've given us a great resource, Paul at LifeTech, to help us if we have questions on anything.  

Can we please discuss expediting her discharge, especially since she doesn't have to meet a weight requirement?  Having her there is weighing on her, on Frank and I and on our five boys.  You guys have taught us how to be her doctors and nurses and now we just want to be her parents and her family.

Thank you and we look forward to talking with you soon,

Cathy"

Not many get to understand what it's like to not be able to bring your newborn home with you.  Even me.  I'd had five kids prior to Mallory.  All healthy, bouncing little babies, ready to come home and keep me up all night.  My husband and I had to learn how to care for a baby with a g-tube and a tracheostomy.  How to read apnea monitors and pulse oximeters.  We had to learn how to operate and troubleshoot a home ventilator.  She's got medical poles in her bedroom and medical supplies in a bay window cubby.  We try to make this as normal as possible but it's not always easy.

I spent and sometimes still spend so much time feeling like no one thinks I'm good enough for this job.  The job of taking care of Mallory.  A special needs baby.  When she's sick, she's sick for twice as long as a normal baby.  I have to carefully plan all of her feedings.  I've never been one to follow many rules.  I like to go with my gut and do what I feel.  Never have I felt my methods be under such scrutiny as with Mallory.  Despite all of that, I feel like I'm making good choices for my baby girl.

A lot of people look at me like I'm an expert.  Five kids?  Psshhhh…. piece of cake.  I know how to bathe, feed, clothe, comfort, schedule and love my babies.  I'm proud of it.  But all of this?  Baby number six?  Mallory?  Something unknown?  It's thrown me off balance.  Nothing up to this point in my life prepared me for this.  Even being a teen mom.  Nothing prepared me.

Mallory is here though.  She is.  She's home and thriving.  She looks at me with recognition and smiles.   She grabs at my husband's beard.  She loves us.  She loves her brothers.  She loves being here.  My Pfeiffer girl wasn't in the plan, but we love her so much that it's almost indescribable.

I look at her when I lay her down at night in her bed.  I look at her profile.  A profile that I expect to see a protruding forehead and abnormal features and all I can see is my daughter.  She's normal.  She's beautiful.  She looks just like her clone brothers!

Oh my gosh, and those eyelashes!  They are to die for!!!

The sweetest little lady bug around.  I love my Mallory.



Tuesday, December 3, 2013

This is How it Really Goes!

As a photographer, I get asked all the time if I have just as hard of a time photographing my own kids as I do theirs.  I always answer with a kind of snort and chuckle and say, "my children are the worst!!".  It's a good thing I am happy with only one good photo because I'd never be able to deliver to myself what I give to my clients!

So, I thought, just in case any of you don't believe me, I'd post a series of outtakes from my latest attempt at a group photo of my six glorious children.

This is the first shot I took this evening (I didn't apply any editing to any of these, they are as they are straight out of camera):


Not too bad for a test fire and I could probably edit this and use it.  I really wanted one with my daughter looking at me though.

This was the next one:



Not really sure what was going on here.  I've got one looking like he's saying a prayer (Andrew), perhaps that this photo shoot would be over.  One (the little guy at the top, Quentin) looking terrified of who knows what.  Then there's my oldest, Tyler, looking like… well… that.

I shoot off a few more and then my seven year old, Nick, decides the light is too bright for him and has to rub his eyes; forever apparently.  I turned off the kitchen lights and he still couldn't hang.  Then my photos start to look like this:










If you couldn't guess, Nick is the one on the bottom left there looking like he needs to either poop or vomit… maybe both.  But just look how lovingly his sister, Mallory, is placing her hand on his shoulder!

So I decide to let him move places with Andrew to see if that would help with the light problem.  By the time we got all of that accomplished though, my baby girl was about done.  So I got this:









Here I've got two squinters, a crazy eyed Andrew and a baby that looks like she's actually trying as hard as she can to run the hell away from this ridiculous scene.

I called it quits after this.  We had some dinner.  I sulked.  I drank a beer.  I decided to give it another go in another room, hopefully with less painful lighting than the… no lighting… in the kitchen.

And yes, what a success it was.












Only after shooting this entire batch did I realize my ten year old, Jeremiah, didn't bother to wash spaghetti off of his face.  Adds a little flare to the photo, huh?

My husband, Frank, and I did everything in our power to get smiles and good photos this time around.  We even started a lovely skit similar to what you'd hear from the Yip Yip Aliens on Sesame Street.  There was no stopping it though.  It came regardless of our efforts.  Yep, you've guessed it.  The return of the lights too bright, maybe needs to poop, definitely can't keep his eyes open, must rub them at all costs, he may be having a heart attack, squinting Nicholas.


I think he may have been giving me the finger too.  Figures.

Then I had this brilliant idea that maybe he could just look lovingly at his beautiful little sister, to avoid any contact with whatever lights may be ailing him.  I got this amazing gem:






I think Nick may have either been going for the "I'm a cat licking myself" look or he was still really hungry after dinner.  Everyone else looked great otherwise.  I even got Mallory giving Jeremiah a little grin.  Damn….

So we finally get some kinks worked out and get Nick to smile.  But then Jeremiah looks like this:







Attach that expression with this and you'll know why I won't ever use this… ever….

(Beware of the 'F' bomb at the beginning of this video)



So, anyway, after two head swaps, some cropping and my personal editing touches, I finally ended up with this photo, and it's definitely one I can live with.  One.  That's all I got, but only because I was forced to put different heads on my children.


























Wednesday, September 25, 2013

Feeling Complete

My life has seriously been flipped upside down.  When I found out I was pregnant with Mallory I did not anticipate any of what has happened.  Who would?  Seriously?

Who would anticipate spending hours researching Apert and Pfeiffer Sydrome?  Or having to learn how to operate a ventilator and a suction machine?  Who would anticipate feeding their child through a hole in their stomach?  Not this chick.  That's for sure.  

Two and a half months in the NICU/PICU is enough to make anyone batty.  It made me a friggin' lunatic.  Juggling being there and being with my boys and my husband traveling again and every day life... it wasn't easy.  I tried hard to make it a regular thing, a part of every day life traveling to the hospital, but it just wasn't.  It was hell.  Every time I left the hospital it was like I was leaving a piece of me there.  I felt incomplete at home.  I felt wrong.  I felt guilty.  

But now.... she's home.

Yep, that gets it's own sentence.  As I type this, I can look down at her sleeping peacefully in her swing in the comfort of our home.  I've been able to witness her smiling and experiencing her big brothers every day.  She's with her family now.  She's loved more than she even knows.  And I feel so complete.

The strangest thing about all of this is that I'm not scared.  Our team at CHW really wanted us to have home care nursing.  A lot of families around me even told me I should have it and that I'd appreciate it.  But here's the thing... I'm a private person.  I like my time.  I don't like my toes being stepped on and most of all, I hate being watched.  I felt like I went through all the training and learned how to care for my daughter for a reason.  I listened carefully and took notes.  I also just wanted to have the newborn baby experience.  The late nights, the midnight feedings, the tired raccoon eyes.. all of it.  It also helps that I have THE BEST partner a person could ask for.  My husband, Frank, and I are the best team.  Since the day we met we've been a team in some way.  I know him and he knows me better than anyone else... good, bad, beautiful and ugly.  What he forgets I remember and what I forget he remembers.  There's no one I'd rather go through something like this with.  And it melts my heart to see him with her.  He lights up when he's around her.  It's so special and sweet!

Mallory is just another one of my children.  Just like I had to figure out each of my other kids when they were born, I have to figure out her too.  We are finally settling into a schedule.  She's eating much better, and all through mouth now.  I haven't had to feed her through her g-tube in 2 days.  She's becoming interactive.  Her personality is starting to develop.  And for the first time since she was born, I finally feel like she recognizes me.  That feeling wasn't there when she was at the hospital.  I felt like she knew the nurses better than she knew me.  It hurt my heart so much.

She's a Broz.  She's a fighter.  She's tough.  And she is going to get through everything life throws at her and we are going to help her do it.  

She has made me a stronger person.  She's helped me to realize what's important.  She has brought so much to our little family and I couldn't ask for anything better.  My children, Tyler, Jeremiah, Andrew, Nicholas, Quentin and Mallory... they are the best things I could ever ask for.  They are all unique and special and we truly are a special family!  My heart is full.  My heart is full.  I love my life right now and I wouldn't trade it for anything in the world!


Sunday, June 30, 2013

Mallory's Way


Since the day we found out our baby girl was with out a doubt going to be born with abnormalities, our lives have been a whirlwind of nothing but crazy.  Instead of that joy parents feel when the due date draws nearer, we felt fear.  We felt worry.  We felt out of control.

I think we did what everyone does when they get new information they don't know what to do with, we hit up Google.  We were told it was likely our sweetheart was going to born with Apert Syndrome. After looking it up, our fear sky rocketed.  What was she going to look like?  What abnormalities would she have?  Would she need surgery right after birth?  Would she have a normal life?  Would she have a long life?  Question after question went through my brain, none of which actually had any answers pertaining to my baby.

We went through tests and a doctor switch.  We got put in contact with all types of different people to prepare us for what was to come.  There were days we were told that they were leaning away from Apert syndrome and then days when they were back to that potential diagnosis.  There were days that were so frustrating that I was in tears for what felt like hours.  And I would resort back to the thought, "Why her?  Why my baby girl?  My only girl?  Why did this happen to her?".  I guess I still don't really have an answer for that question but I'll do whatever I can to make sure I find out.

I guess we were fortunate to discover her abnormalities prior to her birth because it gave us the opportunity to do some of the grieving ahead of time.  By the time she was actually born we were in a place where we had a good understanding of the potential outcomes and that there was nothing we could do to make this any different.  The reality was hard, but it is reality.  There's no wave of a magic wand that can take any of this away from her.  So we decided that it would be ok.  No matter what.  We will accept it and teach her to do the same.  We will make her life as awesome as we possibly can and I will still do all of the girly things I always wanted to do when I imagined having a daughter someday.

  

Mallory Christine was born on June 20th.  She was born at 35 weeks, 5 days, what they consider a late preterm baby.  In my past pregnancies, I always feel done with being pregnant at this point but always managed to make it a couple more weeks before actually going into labor.  I didn't plan on her coming early but she had a different idea.  I went in for my weekly prenatal visit, which consisted of a level 2 ultrasound, a non stress test and an office visit.  This particular day, I was also scheduled to meet with the hospital's neonatologist to get an understanding of what to expect at delivery.  My fluid levels were high again and during the non stress test I was having a few contractions.  When it came time for my regular office visit I was having a few regular contractions but nothing that really concerned me.  Braxton Hicks contractions were very normal for me.  The nurse left me in the room by myself for a good 20-30 minutes (gotta love making an appointment to wait forever for the doctor!).  When the doctor finally came in she asked me how I was feeling.  I told her I was having a few contractions and shrugged it off.  She asked me how many I'd had.  I said I'd had probably 5 or 6 in the 30 minutes I had been in the room.   Both the doctor and the nurse looked at each other and said, "that's a lot".  

With that, I was immediately shipped down to labor and delivery to monitor my contractions and make sure I wasn't actually in labor.  I called my husband and he immediately made the hour drive down to the hospital.  After probably 7 hours or so in labor and delivery, I had dilated to 6 cm.  It was enough to keep me in the hospital but my labor had come to a standstill.  We spent the night there with still no change by morning.  At that point, they made the decision to induce the labor.  Mallory made her arrival at 1:10pm.  She cried right away.  I felt so relieved, she was strong enough to cry.  She was whisked away though across the room.  I didn't get to see her or hold her.  My husband was watching what the neonatologist was doing and turned around and put his three middle fingers together, telling me that her hands where syndactyly.  They got her stabilized and brought her over to me so that I could get a look at her before the sent her up to the NICU.  I first saw Mallory's full head of beautiful, dark hair and then I saw her tall forehead and her mitten hands.  Apert Syndrome.



The next time I saw Mallory was right before they were to intubate her.  The nurse wheeled me up to the NICU to see her on my way to my recovery room.  That was probably the hardest moment for me.  I've never had to see any of my babies like this.  I've seen it on TV but never in real life.  Her nasal passages were too narrow to fit tubes in and she wasn't breathing as well on her own as they'd like.  She was just laying there.  Monitors and wires everywhere.  I wanted so much to just be able to scoop her up and cuddle with her.  To let her be able to touch me so that just maybe she could possibly know that anything she was about to encounter would be ok.  That Mom was nearby.  I was so scared for her.  They allowed my husband to take a quick picture and then we had to leave.  When we got to my recovery room we were both silent.  I felt like if I spoke I would cry.  It was the first time in weeks of trying to be optimistic that I felt like maybe things wouldn't be ok.  Everything seemed impossible and my little girl seemed to be suffering.  It was terrifying.  That began our NICU journey.



It was determined that Mallory would need some additional care and consults for her condition.  So she was transported to Children's in Milwaukee after 3 days at the hospital she was born in.  The transport was a big to do.  I was so worried about her drive to Milwaukee.  It was probably about an hour and a half from where we were.  The doctors that came with though talked us through what the trip would be like and said they would call us when they arrived.  My husband and I headed home so I could see my boys and wait for the phone call.  I wanted to make an immediate trip to Milwaukee to see her and get a feel for the new place she'd be staying for a while.  We finally got the phone call that they'd arrived safely.  She didn't much like the trip and they had to give her a little extra oxygen, but she did well otherwise.  



Since her arrival there, we've gone to see her every single day.  She's had some challenges but she's doing well.  She had some lung prematurity and with her narrowed nasal passages, breathing was something we needed to focus on.  We've met with a craniofacial doctor who is very confident in the plan for her future surgeries.  We are told he does amazing work as well.  He also has one of the best doctors on standby to do the surgery on her hands when we are ready.  They will be able to separate all of her fingers on each hand which is so fantastic.  There's been a little question as to what her actual diagnosis is.  A geneticist was in to see her and thought that her symptoms resembled Pfeiffer Syndrome instead of Apert Syndrome, so we are having a blood test done to find out.  Either way, the treatment plan is very similar.  



She's been in the NICU for 10 days now and she keeps getting better and better every day.  She is still using a feeding tube to eat, but a therapist will be working with her to get her bottle feeding.  She's completely off the O2 as of this evening, which is so great!  She's taking a pacifier and learning how to suck on it, which will definitely help with bottle feedings.  The nurses say that she actually loves her pacifier now!  She does still have a very narrow airway but it does appear she is breathing through her nose when she needs to.  We also got the good news today that she doesn't have a cleft palate!  This will definitely make teaching her how to use a bottle a little bit easier!  We are taking some very positive steps forward.  I don't know how much longer she'll have to be in the NICU, but every day she gets better and I cannot wait to bring her home!  I love her so much!  I love holding her and giving her kisses.  I love hearing her cry (we didn't hear it for 6 days because of the intubation) and changing her diapers!  It's the small things I may have taken for granted before that I am enjoying and embracing so very much.  





Mallory is going to have a journey ahead of her.  There is no getting around the surgeries she will have to endure to enlarge her skull to make room for her growing brain.  She will have to have surgeries to correct her fingers and potentially her toes if we decide to go that route.  There will be physical therapy and many, many doctors appointments.  But I feel very confident with our group of doctors and confident that she is getting the very best care she could possibly ever receive!  I can't wait to get our little lady bug home and start really getting to know her.  I can't wait for her big brothers to get to know her!  I can't wait to take millions of photos of her and continue to share more of her story with everyone!  She is going to be the light in all of our lives and I am so happy she was given to us!