Monday, November 21, 2011

Early Christmas Gift

Tonight, I had one of the happiest moments since I've been a mother.  


He has a PMV (Passy-Muir Valve) that fits over his trach.  This is what enables people who have trachs to speak out loud.  It's a one-way valve that allows them to breath in through the trach but forces the air out through the vocal cords.  Parker has been unable to tolerate an unmodified PMV until tonight. 

We didn't capture much on video but I hope to get more on tape soon!!  Most of what you hear is Parker but Alexa does laugh as well in the middle and at the end of this segment.

This is the best early Christmas gift I have ever received!!!

Saturday, November 12, 2011

What a Difference a Year Makes

I was looking at my planner the other day trying to find out when an old appointment was and I made my way back to November of last year.  I realized how much has changed for our family and especially for Parker since then.  Many of you ask for more specific updates on how Parker is doing and I often leave a lot out.  Hopefully, this post will bring you up to speed on what our lives looked like THEN (mid-November 2010) and NOW (mid-November 2011).

THEN:  Alexa had just turned two and Parker was 3 months old.
NOW: Alexa just turned three and Parker is now 15 months old.
THEN: Parker had been home from the NICU for almost 6 weeks.  We were still scared to death but adjusting.  Parker's breathing was still labored and he sounded very loud.  He couldn't get adequate air unless he was in very specific positions and he had to be on continuous oxygen. He needed to be very closely monitored.  He had a heart/apnea monitor hooked up to him 24/7.  It was the end of November 2010 when Parker's airway finally collapsed and we ended up in the ER and then went by ambulance to Children's Hospital in Omaha.
NOW: Parker has a trach.  We realized after all other options were considered that a trach was the only way to go.  It was the best decision we ever made because now Parker CAN BREATHE, he can be in any position he wants and he doesn't need oxygen unless he's sick!!  We no longer have the heart/apnea monitor but still use a pulse oximeter when he's sleeping.  It is definitely a lot of work caring for a child with a trach.  We have to do trach cares where we clean around his trach stoma at least twice a day, we suction him a lot, we do trach changes weekly, we have a heck of a lot of medical equipment and have to take it with us wherever we go, and he's more susceptible to infection since he has a direct passage way to his lungs.  But even considering all of that, it is SO WORTH IT not to fear your baby is going to die because they can't breath!!!

THEN: We were exhausted as we didn't get much sleep.  Paul and I were the only ones that knew how to do all of Parker's care and we had to be on 24/7.
NOW: The trach qualified Parker for in-home nursing care.  Now we have a nurse every night of the week from 11p-7a so we can sleep.  I won't lie, it was incredibly hard having a complete stranger in my house caring for my child but we have adjusted to it and don't know what we would do without that extra support.

THEN: It took us about 40 minutes to feed Parker expressed breast milk through a special bottle every 3 hours during the day and night. It felt like all I ever did was pump, feed, and burp him.  The Doctor's told us he would likely never be able to get his daily caloric requirements by mouth but we worked very hard at it and proved them wrong.  It wasn't easy though.  We had to hold him in just the right position which made it easier for him to coordinate the suck/swallow/breath but the position was very uncomfortable for us.  We had to watch very closely for signs of aspiration and not push him too hard.  He wasn't gaining weight very well because he had to put in so much effort to eat and was burning practically as many calories as he took in.  But he was doing it and we were so proud of him.
NOW: When Parker was hospitalized in late November 2010, they did a swallow study on him and found that he was aspirating very badly.  We were told we should no longer give him oral feeds.  He had a g-button placed and gets all of his nutrition by tube feeding.  We give him 4 tube feedings that run about 45 minutes each during the day and he's on a continuous drip feeding at night.  Parker is also on a specialized, prescription-only formula since he was found to be intolerant of breast milk and regular formulas.  Once on the tube feeding and the special formula, Parker's weight took off like crazy and he's now above average!

THEN:  Parker hadn't had any surgeries or been under anesthesia
NOW:  Parker has been under anesthesia 5 times (all before he turned ONE) and has had around 20 surgical procedures done while under.  At least 5 of these would be considered major surgical procedures and the rest minor.  He's also had numerous MRI, CT's, ultrasounds, x-rays, swallow studies, and various other imaging studies done.

THEN: We had 5 Doctor's involved in Parker's care
NOW:  We have 14 Doctor's managing Parker's care as well as four therapists/teachers, and several other health care professionals.

THEN:  Parker had around a dozen medical diagnoses.
NOW:  Parker has well over 100 diagnosed medical issues.

THEN:  Doctor's intimidated me.  I thought it was their job to look at all the information and decide what the best course of treatment was for my child.   I thought whatever decision they made was best.
NOW:  I have learned to advocate for my child and family.  I have learned to step out of my box and let my opinion be heard.  I have learned that Doctor's don't always know what's best and some will even admit that.  I have learned that I know my child better than anyone and it's my job to figure out what's best for him with the information that I have.  I have learned to seek out a second opinion if that makes me more comfortable with the decisions I have to make.  I have learned that I simply want the best for my child and there is no stopping this Mama Bear from doing whatever she can for her family.

THEN: Parker took 4 doses of medicine per day
NOW:  Parker takes anywhere from 5-15 doses of medicine per day.  Right now we're at 5 - YEA!

THEN: Parker had very limited mobility.  He held his hands in a fist and had to wear splints.  His hearing and vision were quite delayed.  He slept most of the day.
NOW:  Parker does very well with his hearing aids and though it's still limited, his vision has improved drastically.  He can now hold a sitting position with support, stand with limited support, roll over each way, grab at toys, pull his sister's hair on purpose, and use both his hands together.  Parker is awake most of the day and loves to play and be cuddled.  He also has the most wonderful smile in the whole world!!

THEN:  We never took Parker into public places in fear of him catching something
NOW: We take Parker into outdoor public places when it's nice out.  We still try to stay away from indoor public places because Parker's immunity levels are on the low side and he catches things easily.

THEN: We spent a lot of time worrying what Parker's future held, we were stressed all the time, we felt guilty that we couldn't give Alexa the childhood we had expected to, we were grouchy because we never got enough sleep, I was concerned with what all this meant for my marriage because statistics show situations like ours can break up families.
NOW:  Parker amazes us everyday, we appreciate life and the current moments we have more, we don't get too worked up over the little things anymore, we feel blessed to have two wonderful children in our lives, we love that Alexa is such a wonderful big sister and we believe she will grow up to be a better person because of her experiences, I feel my marriage is even better than it was in the past, we have felt the power of prayer and know miracles do happen.

Tuesday, November 8, 2011

Guess who is THREE!

On Saturday, Alexa turned THREE! 

It's a bit unreal and I cannot believe it's been three years since she was born!!  We celebrated by having a small party on her birthday where we had her favorites, pizza and cake.

I let Alexa pick out the theme for her party this year.  It was a tight race between Tinkerbell and Curious George but in the end Tinkerbell won. 

Then yesterday, Paul and I took Alexa to CoCo Keys which is an indoor water park in Omaha.  We'd never been but judging by how much Alexa loves swimming lessons we thought it would be a hit. was!  She loved the place and would've stayed all night long.

Happy birthday my beautiful girl!!