Wednesday, September 29, 2010

Welcome to Holland

One of the nurse's at the hospital gave this little story to me and I thought it was worth sharing

by: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Saturday, September 18, 2010

So much to be grateful for

Last night I was grouchy.  Yes I admit it.  I let the frustrations get to me.  Then today I got to the hospital and Parker took his whole bottle for me and then he was wide awake so I turned his little music player on and we danced...for about 20 minutes I just held him and we danced.  He was looking straight up at me and kept smiling.  It was probably gas but I prefer to think he was happy.  I remembered I have so much to be grateful for.

1) To have been blessed with 2 beautiful children
2) That Parker has made so much progress even with everything stacked against him
3) That Alexa has handled all this change rather well, that she is now a cuddler, and that I am able to appreciate the precious one on one time I have with her more than I maybe used to
4) To have the best husband anyone could ever ask for (and I realize I need to tell him this more often)
5) That both sets of our parents have gone above and beyond for us through this whole thing both during my bedrest and since Parker has arrived.  They have put in countless hours watching Alexa, helped around the house, got us things we need for the house and to prepare for Parker coming home, offered endless support and encouragement and so much more!  I don't know if we could've made it to this point without them!
6) For the gals from my MOPS group.  They have brought over food, offered to help out anyway they can, called me just to see how I was doing and more.
7) For my co-workers at Tabitha who generously offered to have our carpets cleaned
8) For the Chromosome 6 group on facebook and the people I have met on-line that have gone through similar situations with their loved ones.  The support has been amazing and it's nice to know we're not the only ones going through something like this
9) For the love and support we've received from our church.  We left a wonderful church in Arizona and didn't know if we'd find a place we felt so at "home" again.  I think we have.  They have been so wonderful to us
10) And most importantly, for all our friends, family, and complete strangers who are praying for us!  I really feel like the prayers have made a difference not only for Parker but for our whole family.  I can't even begin to express how thankful I am that so many people have kept us in their thoughts and prayers!

Friday, September 17, 2010

Parker's birth story and updates

So Parker's due date is today, September 17th.  He ended up coming a bit early as we all know so he is 1 day away from being 6 weeks old.  I can't believe how quickly this 6 weeks has gone and I can truly say this has been the most difficult and life altering few weeks of my life yet I feel comforted and fairly at peace with things and I truly believe this is because of the many, many people we have praying for our family.  But I think I'm getting ahead of myself...(I'll warn you now, this is going to be long - I think blogging may keep me out of therapy).

I'll begin this story on August  5th.  I went to my regular check up at the OB.  They had troubles finding Parker's heartbeat on both the Doppler and their non-stress-test machine so they sent me directly to the hospital.  It was the same story there.  Parker's heartbeat was fluctuating between 70 and 140.  This scared the nurses a lot so they called my OB and a specialist who both said to rush me to the OR and prep me for a C-Section and they'd be there soon to evaluate. I was a bit in shock over all of this because I was not expecting to have a baby that day and if it wasn't for the fact that I happened to be at the Dr that day I wouldn't have known anything was wrong.
They did get me prepped and into the OR.  The specialist showed up first and did an ultrasound.  He said there was definitely an arrhythmia present but he didn't feel like we needed to get the baby out - he would just continue to monitor things and make sure baby was alright.  My OB showed up a couple minutes later.  She informed us it was her opinion that we do need to go ahead with the C-Section right then based on the numbers.  They decided since they couldn't decide that it was up to us.  Wow, what pressure is that!?!?!  Shouldn't it be THEIR job to come to a consensus and tell us what to do? Well, we decided not to have a C-Section right then and instead go to the specialists office for a more advanced ultrasound and to stay in the hospital overnight to continue with non-stress-test monitoring. 
At the specialists office we were told that the arrhythmia wasn't anything to be too worried about and that we could go home and come back on Monday for follow up.  We were also told that Parker's right kidney was enlarged and we should have it evaluated after birth but that it wasn't anything to get too worked up about.  Easy for them to say, right?  Before that day, I didn't think anything was wrong with my baby and now he has heart and kidney troubles and based on ultrasound measurements, was smaller than he should be for his gestation!
We did end up staying in the hospital overnight just to be safe.  The NST that evening was a mess!  The numbers were all over the place and really scared me.  My contractions were also getting much stronger and more frequent but I believe this was all due to the amount of stress.  The next morning the NST looked pretty good and the numbers were in a desirable range.  So...the specialist said I SHOULD go home and my OB said I COULD go home as long as I came back on both Saturday and Sunday for a NST.
So on Friday afternoon, I was discharged home.  I think this made me pretty nervous since just the day before I was lying on the OR table minutes away from having a baby.  That night I wasn't feeling as much movement as I normally did and it took a long time to get my 10 kick counts in before bed and when I woke up in the middle of the night.  When I woke up at 8am on Saturday I wasn't feeling movement at all..  I called the hospital and moved up the time for my scheduled NST.  Between 8a-10a I only got 2 very light kicks and the numbers on the NST didn't look good again.  My OB showed up and said we needed to do a C-Section as she was worried about the baby being stillborn.  So, we agreed. 
Parker was born at 11:52 on Saturday, August 7th.  He was 4 pounds, 10 ounces and 17 1/2 inches long.  I got a very quick glimpse of Parker before they rushed him off to the NICU.  He did let out a cry which was very reassuring and I was pleased at his weight because this was quite a bit more than the Dr's thought he weighed when they measured on the ultrasound.
I should point out that at this time, Parker was actually "baby boy".  We hadn't picked out his name yet.  It was between Parker and Ethan.  We had chosen James as the middle name after my brother, Lucas James, who passed away as a baby.  It wasn't until the next day that we decided upon Parker (this was Paul's choice).
We learned fairly quickly that Parker had quite a few medical issues and seemed pretty sick for being 6 weeks early.  The Dr's also pointed out some physical characteristics (which they call genetic anomalies) that concerned them and said because of all of this they consulted a geneticist to see if they could figure out what was going on. 
A few days later, the initial tests came back and we learned that Parker has a very rare chromosomal disorder called a 6q deletion.  This means Parker is missing some of the genetic material on his 6th chromosome and even though further testing is needed to pinpoint exactly how much is affected, the Dr believes it is a significant amount.  There wasn't anything that could've been done to prevent this and we have learned that it is NOT familial.  For more information on chromosomal disorders, check out Unique: Rare Chromosome Support Group's website.
The problem is that it is quite likely that Parker is the only one in the world with these exact genes missing so the Dr's can't tell us what to expect or what Parker's prognosis is.  There are others out there that have 6q deletions, but the exact location of the deletion is different so the Dr's can't really compare them.  What we do know is that we love Parker very much and hope the best for him.  We trust that God knows what he is doing and that he has a plan.  We may not understand "why" but that's OK. 
I don't even know how to start explaining everything that Parker has going on or what we have learned over the past few weeks but I will try to give a brief overview.

1) RESPIRATORY:  Parker has been on a ventilator, CPAP, vapo-therm, and high flow air.  He is now on low-flow oxygen.  He was breathing on his own for a couple of days but he has taken a back step and the Dr's really don't know why.  We have been told he has low tone, a floppy airway, and possible chronic lung disease.  Parker breaths much better while laying on his tummy and doesn't do to well on his back.  Finding just the right position for him is very important and makes a big difference in how well he breaths. 
2)KIDNEYS:  Parker has what is called hydronephrosis which means his kidneys and ureters are enlarged.  He had a scan (VCUG) that shows he has a significant amount of reflux in both kidneys and will need to continue on an antibiotic indefinitely to help prevent infection.  They will do surgery to repair the kidneys but not until Parker is bigger. 
3) HEART.  Parker had a PDA (a valve that should've closed after birth but didn't) and a heart murmur.  The PDA was suspected to be causing some of his respiratory issues so they did another heart ultrasound recently and found that his PDA had closed which is great news because it is one less surgery that Parker will have to go through.  Parker also has a lot of bradycardia's (when the heart rate drops) and these are probably a result of the floppy airway.   
4) Digestion/Eating.  Parker has gone from only get IV fluids and lipids to getting breastmilk on a continuous basis throughout the day by tube feeding to now being able to take a couple of full bottles of milk throughout the day all by himself (the rest are given by tubefeeding still).  He also went for quite a while without being able to digest any of his food (it would just stay in his tummy) and now he doesn't seem to have a problem with the digestion at all.  He did a swallow study to confirm that he does protect his airway so it's OK to give him food orally.  The swallow study did show that he refluxes, especially up into his nose so he sounds quite congested while he eats.  His "floppy airway" also contributes greatly to feeding difficulties.    
5) He is anemic.  Parker is borderline in need of a transfusion but before we go that route the Dr's are trying to increase his red blood cell production through medications.  He is getting a procrit shot for 10 days and extra iron to try and help.  I'm hopeful this will do the trick!  Every time they take blood to run tests it makes this risk higher.  This is why the next series of chromosomal testing has been put on hold.  Parker simply doesn't have the blood to spare that is required for the tests. 
6) Developmental Issues.   We don't know what Parker's status is here and we will just have to wait and see.  It's common for kiddos with 6q deletions to have developmental delays but there are a lot of variations with this so we are hoping and praying for the best.
I think I'll stop there with trying to list out his medical issues. Some of you may have questions and we will do our best to answer them but know that we don't have many answers at this time and may not get answers at all.  We now feel ready to talk about it so don't feel like you need to hold back.
Other than all that, Parker is still our precious little baby and we love him more than we can even describe.  Some of my favorite things:
1) How good he is at cuddling.  Parker loves his cuddle time and so does Mommy!  He also breaths well while I'm holding him so I know he likes it!
2) His little sneezes are so cute!
3) When he opens his eyes it melts my heart
4) His little coos and noises
5) All his hair, he almost needs his first haircut!

Well, I think that's enough for now.  I think this takes the cake for my longest blog, whew!