Friday, November 8, 2013

Finally...

It's been about a month since everything happened and I can positively say that life is much better...and busy. My last day of work was October 10, 2013, and I am now a stay at home mom (for the second time). Gavin's private preschool schedule, combined with his special education preschool schedule, which changed for the 2013-2014 school year, became overly complicated and I was spending more time driving him to and from school than I was able to spend at work. For every one's sanity, Rocky and I decided it would be best if I left my job in order to better accommodate Gavin's schedule. It was a great move and our day-to-day life is running smoother and everyone seems happier. 

Aside from acclimating to life as a new again stay at home mom, I've had to focus an unusual amount of attention on garnering a referral to a pediatric ENT. I should back up to the beginning. Rocky and I have never had concerns about Gavin's hearing. Like, ever. Obviously, this was our first mistake. When Gavin began showing signs of a speech delay and everyone asked about his hearing, we always confidently replied, his hearing is great. Our second mistake. It wasn't until Gavin's neurologist, the one we see for his vertigo, encouraged us to have his hearing checked. Although I didn't want to do it, I obliged because, well, I liked the neurologist and I didn't want to piss him off and, more importantly, I didn't see any actual harm in having it done. Between the referral and scheduling with the audiologist, it took a few months to start the process. And, for those that have had their children's hearing examined, the testing process is not an easy one. In fact, it's pretty much a clusterfuck. Because it's a rather long examination, they generally break it up for small children into multiple appointments. Still thinking Gavin's hearing was perfect, I was so irritated after the initial appointment that I blew off following up with the remainder of the testing. Come August, Gavin's speech therapist began asking questions about the (non-existent) audiology report and when I had to fess up that I never finished the testing, I then realized how ridiculous I sounded. I immediately scheduled his next appointment to continue on with the testing and we headed back to the audiologist last month. 

The second appointment was much like the first, disorganized and a bit of a mess but the audiologist informally revealed that Gavin's hearing had deteriorated since his last appointment and his eardrums weren't responding properly to sound. Well, fuck. She had me bring him back multiple times over the next few weeks to re-check his eardrums to see if anything improved, which it didn't. Each time we walked into that office, I kept expecting a referral to an ENT since, you know, his eardrums aren't working properly, his hearing is borderline average yet had worsened in a few months, he has a significant speech delay, he's not progressing the way he should, and he has diagnosed vertigo (which may or may not play a roll in this). But, the referral never came. In fact, I was told that the audiologist would like to monitor his hearing for a total of three months before deciding whether or not to refer out.  Three months. Three. Seriously. I was floored. I wanted to scream a ton of obscenities at her and quickly remind her how much bullshit he has endured in his short life. If I was less of a non-confrontational person, I'm sure it would've sounded something like this: 

This is the child who lived his first four months of life in the ICU, the one who has qualified for every special education service known to mankind, or so it seems, since the moment we came home from the hospital, the one who has a team of specialists that follow him as he continues to grow, the one whose doctors ALWAYS err on the side of caution. So, why in the world would a referral to a pediatric ENT for a potential hearing deficit on a child that is already at risk for hearing issues be so freaking unreasonable? 

That's what I wanted to should have said to her. But, I didn't. Instead, I smiled, walked out of her office and called our pediatrician. Yes, I know this was very passive aggressive of me but I'm not one to flip my shit especially if I don't absolutely have to. Unfortunately, our pediatrician needed a reason for a referral so back I went to the audiologists office to desperately obtain the chart notes. Cheese and rice. Could this process be more mother-effin' complicated? Apparently, yes. Gavin's speech therapist caught me during drop off and me, being knee deep in the midst of the situation, threw all of this on her and, she, being the wonderful professional that she is, offered to call the pediatrician in attempts to move this process along. Holy hell, it worked! The speech therapist expressed her concerns about Gavin's speech and her belief that there is a hearing deficit obstructing his ability to progress.  Thank you, sweet baby Jesus (<------ that was a non-religious reference since I'm about as non-religious as they come), that was enough of a reason for the pediatrician and we finally managed to get a referral to a pediatric ENT.

Finally. 

And, finally, my long rant has come to an end so here are some pictures of my sweet ass kid as a prize...




Friday, October 11, 2013

A Week Later

It's been a little over one week since IT happened.  Physically, I feel normal again.  Emotionally, I'm doing ok.  The feelings come and go and some moments I catch myself smiling as if nothing ever happened while other times I'm scared and sad.  I've spent the last week talking myself out of falling into another slump like the one I was in after having Gavin.  Everything we went through with Gavin left incredibly deep battle wounds - ones that will never fully heal - but with a hefty amount of therapy and rediscovering myself, I found a place to neatly store most of my emotions.  It's tough.  Rocky and I waited 3+ years to try again for a baby and we definitely did not do so blindly.  We met with the perinatologists, my OB 5,000 times, my gynecologist, and really anybody that might have a medical opinion on what to do differently in order to prevent a repeat.  We were reassured over and over again that what happened with Gavin was a fluke and the odds were in our favor for us to have a successful second pregnancy.  And then it all went to shit.  The rational side of me realizes that miscarriages can happen to any woman regardless of her prenatal history but the irrational side of me is convinced there is something wrong with me and my body.  

I'm trying to move forward but I'm a little lost.  I'll ask my OB refer me to a reproductive endocrinologist (fertility specialist) but I'm not convinced they'll keep me as a patient considering I can get pregnant even though I have trouble staying pregnant.  And, then there's Rocky.  His wounds are deeper than most realize.  When I was pregnant with Gavin, he weathered a nasty, nasty storm and could do nothing to help.  Although he would never admit it, it broke him.  The fact that he could even swallow the idea of a second child without freaking out was a giant leap forward.  And then I miscarried and now we're back to where we started three years ago.  

The entire situation is sad.  I want to complete our family and experience pregnancy the way that it should be.  I want to grow a huge belly and complain about my swollen ankles.  I want to listen to the cries of my newborn and watch Gavin blossom into the most amazing older brother.  I want to finally prove to Rocky that I can do this my body can do this and all of his worrying was for naught.  

So, here we go.  One foot in front of the other.  Moving forward. 

Thursday, October 3, 2013

My Whirlwindy Week

Sometimes things happen in my life and the only way for me to fully digest everything is to write about it.  This is no different. 

Last month, Rocky and I discovered we were pregnant with baby #2.  We had waited 3 1/2 years before traveling down this road again and while we were excited, we were so incredibly nervous, and rightfully so.  I called my OB and squealed when I told them the news and set up my first appointment. 

The first few weeks were pretty uneventful.  Morning sickness was in full swing but semi-manageable.  My clothes were getting tighter but nothing horrendous.  Given my past pregnancy history, we planned on keeping this a secret for as long as we could hide it.  By week six, I realized this pregnancy was not going to be as perfect as we were hoping.  Spotting began on a Thursday and by Saturday, I was bleeding.  I called my OB first thing Monday morning but he was closed and the on-call nurse provided  me useless information that I had heard a thousand times during my pregnancy with Gavin.  Wanting to know answers, I called my other doctor, a gynecologist that I have been working closely with on a bladder problem that stemmed from my c-section with Gavin.  Although this doctor no longer does OB past 12 weeks, he is incredibly knowledgeable about pregnancy complications and how to help his patients make it through the first trimester.  I asked his nurse if they would send me to a lab for blood work, to which they obliged.  My blood work came back quickly and my HcG levels looked great and they had me come in for an ultrasound.  Everything on the ultrasound was exactly what the doctor wanted to see in a healthy six week pregnancy - a perfectly round sac beautifully attached to the uterine wall, a fetal pole with a heart beat and no hematomas.  The bleeding, he decided, must be from low progesterone levels and he placed me on progesterone before even having my results back from the lab (which eventually came back as low). 

Over the next few days, I began to improve and I credited the progesterone.  By Friday, I was feeling confident enough to move around and be a mom to Gavin.  Unfortunately, it was short-lived and by late morning, my bleeding was back and it was back with a vengeance.  This time, my gynecologist's office was closed but my OB's office was open.  I called over there, explained everything that had happened over the week and asked them what I should do.  My OB called back later that day and basically told me that it sounded like I was miscarrying.  He told me something similar when I was pregnant with Gavin so I had a hard time completely believing him.  He said my gynecologist did everything he would've done and to lay low all weekend, and to come in on Monday for an ultrasound. 

Monday rolled around and we made our way into his office.  He fired up the ultrasound machine and the next words out of his mouth were the last things I expected to hear: the baby has no heartbeat.  He must have repeated his sentence five times because I didn't catch it the first four times he said it.  I was shocked, stunned, confused.  I was assured that once you hear a heart beat, your chance for miscarriage goes dramatically down.  I didn't understand what happened.  I cried.  Not so much for the loss of this child but at the realization of what this meant about me and my body.  This unfortunate event confirmed all my of my fears.

We discussed how to continue on - did I want to miscarry naturally at home or go into the hospital for a d&c.  Providing me any medication to induce the process was off the table due to my classical c-section with Gavin and the risk of uterine rupture.  With that off the table, a natural miscarriage could take up to a month to complete and I wanted this over.  Now.  

Rocky and I went home to digest the information and we both agreed that a d&c, although incredibly invasive, was the best decision for us.  Before I could even call the doctor's office and give them our final answer, I began naturally miscarrying at home.  It was a horrible process.  It was long, and gory, and painful.  However, because it already started, the doctor wanted me to finish it at home unless things went wrong.  And, of course, things went wrong.  

By Monday night I had horrendous cramping.  By Tuesday afternoon, I couldn't cough, sneeze, roll over, get out of bed, walk, lay down, breathe without sharp, shooting pains penetrating my entire abdomen.  And, I knew I had bled too much, more than I should have.  When Wednesday rolled around and the cramping hadn't stopped, I talked to my OB who knew something wasn't right.  I came in for an ultrasound, confirmed that I hadn't passed everything and he set me up for a d&c that night. 

I arrived at the hospital and they prepped me immediately.  It was a surreal but calming process.  I was in the OR, which was eerily similar to the last OR I was in for my c-section with Gavin, for less than an hour and felt immediate relief when I woke up from the anesthesia.  My OB informed us that I had an infection forming, my hemoglobin levels were low, and there was still a considerable amount of debris that my body hadn't passed.  In other words, he was glad I came in when I did, before things got too far out of control.  I hung out in recovery for awhile and was discharged with recovery instructions to lay in bed for the next 48 hours. 

There is no doubt this has been one incredibly emotional, heart-wrenching week.  I've been forced to examine my life and realize certain things about myself and my body.  As much as I would love to be pregnant and have a second child, I'm no longer convinced my body can do so.  It's a sad realization.  So, where do we go from here?  I don't know.  My first priority is to make a full recovery and go back to our (semi) normal life.  Everything after that is a mystery. 

Until next time, 

M. 

Monday, August 19, 2013

Checking In...

I'm back, I'm gone, and now I'm back again.  I always seem to check in whenever I am feeling a little out-of-whack, which sums up my current feelings.  I keep wondering if it will ever stop hurting.  The opinions, the unintended jabs, the passing comments - will they ever not hurt?  Last week I had a conversation with one of the specialists that works with Gavin and she expressed her concerns about his motor development. Why do these things seem to come out of left field?  The rest of the conversation left me a little puzzled and by the end, my heart ached.  This is my child.  My baby.  Like any mother, my heart absolutely bleeds for him.

The moral of the story: it hurts to hear someone else tell you your child's short comings. It really really does.   

Gavin's special education preschool returned from summer vacation today.  They changed his schedule around - and notified me one week before school started - and I, not incredibly happy about the situation, sent a rather firm but direct email to his school.  Half of me regrets sending the email and the other half...not so much.  He seemed to have a great first day back at school even though he was the only student in his class to show up.  

Here are some pictures of my guy.  He's growing up faster than I can keep up...







Until next time, 

M.


Monday, April 29, 2013

I'm Back...

I'm back. I didn't wanted to come back but I am. Being back means that life isn't going exactly as planned. Being back means that my two worlds continue to collide. I wish it wasn't so.

Gavin turned three yesterday and it was a splendid birthday. We sang to him, ate too many cupcakes, and watched him tear into his presents with so much excitement and joy. No birthday would be complete without a midnight crying session by yours truly. The first birthday was unbearable, the second one was manageable, and the third was tough. I wonder what the fourth will bring. Will it ever get easier? I can't even put into words why I cried except that my heart is still heavy and my wounds, while healing, are still raw.

Part of turning three also means that Gavin aged out of Early Intervention. It's bittersweet. These therapists, bless their hearts, have been with us since Gavin came home from the NICU. And, although it was time to move on, doing so meant new therapists, new teachers, and a new school. I can't say that Gavin was entirely thrilled with the change in his routine but he's adapting and continues to amaze me with his tenacity. At the ripe age of three, this child understands life and its imperfections better than most, myself included. He is utterly amazing.




Until next time,

M.

Thursday, October 6, 2011

Out of Place

It's been almost a month since my last post and my absence was purely intentional. I need(ed) space. Time. A moment to catch my breath and evaluate my life. Things are calm, almost eerily calm, and I am finding peace in the silence. Gavin is wonderful, Rocky is wonderful, and I am continuing to work through my feelings and emotions. Who knew that 106 days could cause so much scarring and damage? I certainly did not. Despite it all, I am re-learning how to integrate my thoughts and emotions into our overly complex world. At times, it is painfully difficult because I am forced to confront situations and feelings that I have suppressed for 17 months.

You may be wondering about the title of this post - Out of Place. Since starting therapy, I feel caught between two opposite worlds - preemie world and regular world. Preemie world involves a lot of stress, anxiety, fear, doctors, medicines, tears, sadness, early intervention, and evaluations. Regular world, on the other hand, involves play groups, fun times, eating dirt, licking the floor, normal conversations, carelessness, obliviousness, naivety, peace, and stillness. Over the last month, I feel myself moving from preemie world into regular world with one foot in each place. I don't completely fit into either but I am desperately wanting to be regular. Time and therapy have proven crucial during this transition and although it is sad to let go of our old life, I am ready to jump into the regular world with no desire to turn back.

Wish us luck as we pack up and head out on our new endeavor towards normalcy. First stop, Disneyland!!!!!!

Thursday, September 8, 2011

Catch Up

It's been awhile since I lost blogged and I figured it was time to play "catch up." Here it goes...

1. Gavin has mastered stair climbing but assumes the only way to get back down is with a head-first dive.

2. The brushing technique seems to be working and Gavin is starting to eat again!

3. I'm continuing to work with my therapist on my "issues." Although I'm still relatively new to therapy, it is already proven incredibly helpful and insightful.

4. Thrown up chunky milk is disgusting and smells horrid, especially when it lands (and dries) in the shaggy carpet.

5. I've invested in a carpet cleaner (see #4 for further explanation).

6. Gavin was seen by the Plastic Surgery team at Lucile Packard for his two month follow up. They are pleased with the healing and state that the graft was 80% successful. Because he still has an obvious indentation in his nose, another surgery is required. We are hoping to postpone surgery #2 for 1-2 years but that will be decided at our next appointment in 6 months.

7. We've been having a lot of issues with our old health insurance company and the claims related to Gavin's surgery. They initially pre-approved his surgery only to deny the $50,000 claim once it was submitted by the hospital. Lucile Packard is helping us resolve the issue in hopes that the insurance company will pay but it will take awhile before we have a definitive answer. In the mean time, the old health insurance company managed to catch wind of the reasons behind Gavin's surgery and sent me some interesting paperwork to complete detailing the specifics behind the injury. Needless to say, we're perplexed but we are exploring all of our options - whatever those may be.

8. Gavin learned to dance and we spend a lot of time listening to the Toddler station on Pandora. Although Gavin enjoys the kiddie tunes, I think Rocky and I get a kick out of it more than Gavin does.

9. The NICU reunion is next weekend and I am super excited to see the nurses, doctors, RTs, and other families. Gavin has come a long way since his stay at MSJ and I can't wait to show him off!

10. We spent Labor Day weekend in Oregon with my family. We had a great time and Gavin enjoyed spending time with his nana and nano-pa. On Saturday, my mom watched Gavin while Rocky, my dad, and I took a trip to the coast. We visited my parent's river front property, ate delicious seafood, and stopped by the Prehistoric Gardens to take a walk amongst the dinosaurs. All in all, it was a wonderful weekend!

I hope everyone is enjoying the last few dog days of summer. Personally, I can't wait for fall and cooler weather!