Monday, September 30, 2013

Don't Be Sorry For Me--I am Blessed

 Click here if you missed Redefining Perfect Part 1 and Part 2.

We sat in neurologist's office and the doctor walked in.  Very nice man, very tall actually; he was to the point and didn't sugar coat a thing.  God bless him for that.  He picked her up, she smiled at him.  She's such a social, happy little thing.  He turned her this way and that, looked her over from head to toe.  He asked some questions while he was holding her, one of those questions being about blood clotting.  At first I said, no, there's no history of blood clotting.  And then it hit me.  I remembered the nurses pushing on my stomach after labor.  It hurt terribly.  I was passing some large blood clots.  Why didn't it seem like a big deal until now?  I guess that minor detail paled in comparison to the NICU nurse coming down to work on Addyson.  I interrupted him and replayed the hour or so after birth, including the blood clotting and her seemingly difficulty breathing at birth.  He handed her back to me and looked at us and just said, "I'm afraid that there has been some brain damage."  The flood gates opened.  I sobbed.  I was waiting for him to tell me that there wasn't anything wrong with her, even though I knew that wasn't true.  But he didn't.  Brain damage. 

He went on to tell us that it was likely that somewhere between 25 and 30 weeks along in my pregnancy, my placenta must have torn.  It caused her to lose oxygen to her brain and caused some damage.  My mind immediately went to that moment at school when I was 30 weeks pregnant.  When I lost vision, my face went numb, when I knew something wasn't right.  No one can confirm what really happened that day.  I guess I could go have an MRI and they could look to see if there is evidence that I had a mini-stroke.  But honestly, it wouldn't change a thing.  In my mind, that will always be the day it happened, no matter what anyone tells me.  Of course my mind started racing, wondering what I could have done to cause my placenta to tear.  I worked out quite a bit during my pregnancy, I drank some soda, I played with my rough and tumble two year old.  I have to admit, this doctor is very good at his job.  He must have seen the look in my eyes, because right then, he looked at me and told me "There's nothing you did or could have done to cause this.  It's not your fault."  I needed to hear that, I mean REALLY NEEDED to hear that.  Hearing the doctor tell me that it wasn't my fault saved has saved me so many unneeded tears.

He point blank said she likely wouldn't learn to sit up at 6 months old, and that she probably wouldn't be walking at 12 months old.  He let us know that the anisocoria is related to the brain damage, but she should have functional vision.  He said he was hopeful that the extent of the brain damage doesn't affect her cognitively. She's already very social and happy. We just don't know yet.  We talked about ECI, about private therapy, about botox, muscle relaxers, insurance, a social worker, pre-authorization, MRI's... it went on and on.  Too much to process. 

Toward the end of our visit, I asked him, "Does this mean she has Cerebral Palsy?" He sort of hemmed and hawed over the question. Yes, but no. He prefers a specific diagnosis where as CP covers such a wide range of disability. Now, for the life of me, do I remember what he called Addyson's medical diagnosis? Of course not--it's some long name that means nothing to me or 98% of the rest of the non-medical community. Now, once we have the MRI and everything is confirmed, then yes, I will commit myself to learn it. But not right now. Right now I know that my daughter is wonderful. She is beautiful. She may not learn to sit up at 6 months old. She may not be walking at 12 months old. She may have some issues with using her hands. She may have learning difficulties. But then again, she may not. We just don't know. We have to take one day at a time. All I am sure of is that she is God's gift to my family, and quite honestly, to anyone else who gets to be in her life.

The part of our appointment that really got me was when he brought up the divorce rate for couples of children with special needs.  He quoted it at about 90%.  He said that the research shows that the most determining factor wasn't a certain faith background, wasn't counseling, or anything like that.  It was attending the appointments together.  He said that when one parent is the primary caregiver, that there's a lot of resentment and burnout.  I have to say, our marriage has been through the fire.  You name it, we've probably gone through it.  But we do have a strong faith base.  And my husband is amazing with Addyson.  He's on top of all the therapy and has such a tender heart for her.  He's happy to help with the appointments and whatever we have to do to get Addyson what she needs.  We are both all-in.  I just want to take this moment to thank God for everything; every trial, every heartache up till now, because it was all worth it to know that nothing is going to break us.  I simply can not imagine walking this road without him by my side.  I know God has some grandeur plan--I just can't wait to see it all in the end.

I have to admit, I get a little feisty when it comes to her.  Defensive even.  I know I am overly-sensitive about her.  So, I apologize for my reactions if you offer me "pity."  I may not react the right way if you say "you're praying for me."  Don't get me wrong, I appreciate the prayers, just maybe not in the way you might think.  I guess I just want people to know that we aren't sitting here devastated.  In fact, it makes me a little angry to think that people might think that we are wallowing.  I can't explain it--just don't be sorry for me.  I am blessed.  To quote a beloved song, "It is well with my soul."  I am okay with this.  She's going to be tough, just like me.  She's going to work harder than a lot of kids, she is already at this young age, but I have faith that God is going to do great things in her life.  The prayers I do covet are the ones for the stress it may put on my family.  There's a lot of therapy.  I am so thankful that my husband is a firefighter.  He's home every 48 hours, and gone 24 hours, so he's able to participate in a lot.  I'm jealous of that to be honest.  I love being a working mom, and I get to be there for a majority of things, but it's hard being pulled in different directions.  Pray for peace--we do have to take this one day at a time.  The first time she grabs for a toy, rolling over, first words, sitting up, crawling, walking--these are all things that Addyson will likely have to work harder at.  Pray that I remember to enjoy her infancy, not to rush her, and to cast all my worries on God.  Pray for my sweet son, just 3 years old.  A lot of attention is being put on Addyson right now.  More than what's typical of a new baby sibling.  Pray for Addyson--that she gets to be "just Addyson."  More than anything, I don't want this to define her.  And I don't want it to define my view, or my family's view of her. 

I am so thankful that we had a knowledgeable pediatrician who identified the issues early on.  The neurologist admitted that most the time, he doesn't see kids Addyson's age.  They come in at 9 months old when they aren't sitting up, or at 15 months when they aren't crawling or walking yet.  Since we know so early, we have such greater opportunity to use therapy to help her meet her developmental milestones.  Praise God for how extraordinarily He has orchestrated all of this: the timeframe, my amazing job and the people I work with, my husband's schedule, the family support we have.  Just everything.  Praise God. 

I can't wait to share Addyson's triumphs with you.  She's already making amazing progress with her therapy!  I plan to make this a weekly/bi-weekly journal for my family.  I do not intend to abandon my freezer cooking segments.  Just be patient with me--you can see I've got a lot going on!  My family sincerely appreciates the support of my e-book, Time and Money Saving Freezer Meals.

Wednesday, September 25, 2013

Redefining Perfect, Part 2

Right away, Addyson had a lot of quirks. 

She's pretty stinking, cute, huh?!?  Anyhow, moving on...

At the hospital, the pediatrician let us know we would need to follow up with a heart murmur that she had.  No big deal there, our son still has one to this day.  It's fairly common from what I understand.  Our pediatrician wasn't able to detect it at our first 2 check ups. However, nothing ever seems to be quite normal with Addyson, so I am still holding my breath there.

The pediatrician at the hospital was also concerned with her eyes.  She said to follow up with our pediatrician.  At first, the pediatrician wasn't concerned with her eyes.  Said they were fine, reacting to the light appropriately.  Then I began noticing some abnormalities.  One of the pupils would differ in size from the other in dim lighting.

Then of course there was the issue of her respiratory system that they were concerned with at birth, when she wasn't crying loud enough.  Her oxygen levels have checked out fine so far and the only thing that we worry about in this area now is that she's a loud breather.  Some days I worry, some days I barely notice it.

And to top all of that off, at our first doctor's visit, Addyson had severe jaundice and had lost 9% of her birth weight and I was told I had to supplement with formula.  Please refrain from comments on this issue.  That's not the focus here.  She's chubby and healthy now!  :)

So, needless to say, we had a lot already going on.  My sister and I have been calling Addyson "bad baby" in a loving way since the very beginning of pregnancy.  My pregnancy with Caden was so smooth and he just didn't really have any big issues, that this one just seemed all sorts of "bad."  Okay, so the people who are offended by this just need to get over it.  There's no such thing as a bad baby, they are all precious gifts.

We were thriving at home.  We had some things to follow up on, but we were doing good.  We were scheduled to have her 2 month check up.  Then came the big stuff--scary words.  Neurologist.  Hypertonia.  Opthamologist.  My world fell apart, crumbled. I was hearing my husband relay that the doctor was saying that my perfect gift was blemished.  There was something significantly wrong with her.  I am not sure how I remained standing, functional. Well, of course I know--this was the point when I entered a semblance denial.  It wasn't complete denial; I was making appointments and doing all the things I knew I needed to do.  But in my mind, I just kept thinking that we'd get to all these appointments and they'd say she was perfect.  Nothing wrong with your daughter, go home and enjoy your precious family.

Thankfully, God has orchestrated everything so perfectly.  I remember remarking to a dear friend of mine, I think that God put me here to prepare me and He gave me Addyson to make me that much better at my job.  Would I expect any less?  Last year, I was teaching in a highly stressful environment.  I was very grateful to accept a new position at a new district this school year.  I am no longer a teacher, but an education diagnostician.  I received my Master's of Special Education last May to enter this field.  I didn't pursue a job at the time really since my mom had just passed away.  It was a crazy time in my life.  So here I am now, a person in the field of working with special needs children.  In fact, I am the diagnostician for the two elementary campuses that have our severe and profound students who often times need speech therapy, physical therapy and occupational therapy.  I have at my finger tips all of the resources in the world!  On top of that, my sister works for Early Childhood Intervention (ECI) as a nurse, and formerly an Invervention Specialtist.  So with all of the resources, I knew I needed to call ECI to come out for an evaluation.  We made the appointment and then two others.

The next appointment we made was for the Opthamologist to look at her eyes.  I already knew the diagnosis (thanks google!), and that it was very common.  Addyson has Anisocoria.  It is when one pupil dialates differently than the other.  Not a big deal, in the grand scheme of things.  We would later find out that it was an indicator of a larger problem.

The final appointment made was for the Neurologist.  I knew that we would be having her evaluated for her high tone (hypertonia) and what if any neurological problems it could stem from.  It was at that appointment where my world as I knew it just got knocked off it's little axis of perfection and "the way things are supposed to be."

But in all of this, I can't help but think how blessed we are.  God chose us.  ME.  God trusted me to be the mother to this sweet angel.  He knew that our family has everything in the world to give her.  He's given us this amazing story of his faithfulness and grace.  I am in awe of how blessed we are.

Thank you to everyone for your overwhelming support and prayers! They are definitely felt! God is doing amazing things in our lives right now.

Thursday, September 19, 2013

Redefining Perfect, Part 1

A specialist?  The world goes dim when you hear your child's pediatrician refer you to someone else.  It normally means something isn't right, and it requires someone with more knowledge to help.  It's scary.  No, terrifying.  Those were the words we heard at Addyson's 2 month check up.  I guess I've lived in denial for the last month.  I didn't want to see it, I wanted our sweet Addyson to be perfect.  I think that's what every parent thinks and wants.  It's even on her wall in her bedroom: "Every Good and Perfect Gift Comes From Above."  I guess it's time to redefine perfect.

But let me back up.  I think it's important to understand what we went through from the beginning.  We discovered we were expecting--it was a surprise.  We certainly weren't planning on having another child at the time.  We were very happy with our 2 year old little boy who always keeps us on our toes.  Nevertheless we were thrilled; we wanted a bigger family eventually.  The mad dashes to the toilet began early.  Brushing my teeth was dreaded every morning--I still don't know why I didn't just pop in some gum anyway.  Right after brushing, I needed to pop in gum anyhow.  I sure wasn't going to re-brush my teeth after all that.  We heard the heartbeat at our 8 week appointment.  It was high, 176.  I just knew this little blessing would be a girl with as sick as I was and the high heart rate.  Everything was just as it should be.

Then one day at school, I was approximately 10 weeks along, I got extremely dizzy and had the school nurse check my heart rate.  It was high, too high.  I was admitted to the hospital where I was diagnosed with hyperthyroidism.  I was very anxious about taking medication.  The internet didn't help either.  There's all sorts of things that can go wrong with the hyperthyroidism and pregnancy.  It's dangerous for the mom without medication.  It's dangerous for the baby when mom takes medication in the first trimester.  I had to take the medication;  I was holding my breath, praying for this sweet baby.  I went in for my 12 week appointment, relieved to hear my sweet angel's heartbeat.  Then again at 16 weeks and my doctor did a sonogram and let us know that we would be blessed with a little girl.  My sweet Addyson.

Since I had hyperthyroidism, I was referred to a specialist.  At 16 weeks I went into the high risk obstetrics office for a sonogram.  The sonographer seemed to spend a while on her heart.  Nothing was said, but I was worried still.  Something just didn't seem right.  Then at my 20 week sonogram at my regular doctor's appointment, the sonographer requested a follow up sonogram to look at Addyson's heart at 28 weeks.  Terrified doesn't begin to explain how I was feeling.  The weeks came and went.  We arrived at 28 weeks and the sonographer said everything looked fine.  I could breathe a sigh of relief.

My sister and I began planning to take my son to a Thomas the Train event that a local city was having.  We were so excited.  But again, this pregnancy would give me another scare.  It was a Thursday afternoon, right after returning from lunch and PE.  I was sitting at my small group tutoring table with a group of students.  I felt myself becoming very dizzy, my face began to go numb, and then I started to lose vision.  I calmly told the students I was not feeling well.  I walked to the teacher's room next door, asked her to watch my room.  I remember feeling very confused and having a hard time communicating what was going on.  I felt my way down the hallway to the nurse's office.  I sat down and remember saying, "check my blood pressure, something isn't right."  It was alarmingly high.  The nurse took my cell phone and called my husband.  I went to lie down.  John came and picked me up from school and we drove to my doctor's office.  I already had an appointment that day.  By the time I arrived, my blood pressure was back to normal.  Aside from some remaining dizziness, it was as if nothing had happened.  The doctor told me it was likely a migraine, and if it happened again we'd see a neurologist.  I was put on bed rest for the weekend.  There was no Thomas the Train trip for Caden.  At that point, John and I decided that it was time for me to go on maternity leave.

The following 9 weeks went fine, compared to the issues I had already been dealing with.  I enjoyed staying at home, the school year had been extremely stressful on me.  I had a lot of contractions on and off.  My blood pressure went up around 38 weeks and the doctor recommended inducing labor at 39 weeks.  We went in at 6am on June 15, the day before Father's Day.  They started the pitocin and the contractions started coming.  The nurse became concerned about a pattern Addyson's heart rate was showing on the monitors.  Pitocin was stopped until my doctor could come check us out.  The doctor said everything seemed to be fine.  We started pitocin back up and I was at 5cm at noon, and then all of a sudden it was time; Addyson arrived at 1:27pm!  They placed her on my chest for a moment, but then as quickly took her from me.  She wasn't producing a good cry.  They called NICU down and kept working with her for about half an hour.  It was the longest most confusing 30 minutes I have ever experienced.  They finally recomended skin to skin contact to see if that would help.  Eventually they just determined that she was fine, but had a weak cry.

We started nursing, all of that went fine.  You have your normal trial and error with a new baby.  She had a great sucking reflex.  They took her for all the millions of things they have to do for new babies.  We were all doing great and we went home on Father's Day and began our new life as a family of 4.

We just didn't know how much things were going to chage in the coming months...
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