Value in the Unvalued

We live in such a disposable society.  If something breaks we throw it away, we easily grow tired of things and just discard them.  If it is not shiny and new nobody wants it.  People give up on marriage so easily because it is so easy to give up and quit.  Nobody wants to put effort into making things work.  That or they just don't see the value in it.  A small blemish in the packaging will cause us to walk away from an item.   Old and reliable has been thrown to the wayside.

The more statistics I hear about pregnancies that have an early diagnosis of Downs Syndrome the more disgusted I am.  The world makes it so easy for women just to "give up" on their baby because it is not going to be what they expect.  I hear of doctors actually trying to talk women into aborting their child with Downs Syndrome.  I heard one story of a doctor yelling at a mother of a newborn with DS who chose not to have prenatal screening done saying she was irresponsible to bring that child into the world!

What is it that makes people think that there is no value to these lives?  Why does the world view a person with Downs Syndrome as less of a person than someone who does not?  Lack of education maybe?  If it is not easy it has no value?  I just don't understand.  Just because a person comes in a package that looks a little different then average does not make them less loved by God.  Just because it takes them longer to catch on to something does not mean that they can not contribute to the world or make a difference to someone.  It frustrates me and for the life of me I can not figure out how someone can feel this way!

Maybe they just don't know anyone with DS.  Perhaps they shield themselves from anything different because they are scared and it is easier to avoid the person then it is to learn about them.  I will tell you in my 10 months with Preston, anyone who looks at him and takes the time to come see him will walk away with a smile on their face.  I have never seen anything like it.  He has such charisma!  It is unreal, people I do not even know want to see him, they want to be involved with him, he makes anyone who meets him happy.  He changes them just a little.

I am not sure what God has planed for this little baby, but I am telling you it is going to be amazing!  I felt this way ever since I found out that he could possibly have DS.  I am not sure how to explain it without everyone thinking I am a total nut, but God just makes me feel like this child is destined for something great.  He is amazing and has changed all of our lives.

I am so glad that my own personal beliefs do not allow me to devalue a life God has placed in this world.  God does not make mistakes and for some reason, despite all of our faults,  he has trusted Eric and I with this precious life.  How exciting is that!

Another Hurdle

My boy who has already overcame so many hurdles in life has a big one he is facing.  On February 12th he will be going in for his 3rd and most intense surgery to date.  The surgery is called a pull through.  He has Hirschsprungs Disease, basically that means part of his bowl does not function correctly so the surgeon needs to bypass the part that is not working and pull the good part down and reattach.  Sounds simple enough, but it is scheduled to take up to 6 hours!  This was one of the reasons he got the colostomy bag when he was 3 weeks old.  He was too little for this major surgery so that was done as a band aid for the problem until he got larger.  So now at 10 months old he is ready!

How do I feel?  Freaking out a little!  I am excited to move on with our lives....the colostomy bag will be gone after this and we knew this surgery was looming ahead of him, but at the same time I am not liking the fact that my sweet 10 month old baby has to go into surgery yet again!   I really don't like that it is going to be so long and I hate to see him in the hospital yet again!  

Yet, I know this too is all in God's hands.  I have trusted God this far and even when I felt like I had no strength left, he helped me through!  Plus lets face it, Preston has the hard part and he is as happy as can be!  That boy laughs all the time and smiles whenever you look at him.  My sweet boy has such joy!  He has been through so much, way more than any child should have to go through and he is so happy! I know God will see us all through this trial.

I am not sure if I shared this on here or not, but I want to let you in on our exciting news!   Preston's VSD is closing on it's own and it looks like he can avoid getting surgery on his heart!  Great news and while it is not closed all the way yet, it looks like it is not something we are going to have to go into surgery for.  Also the fact that he is growing strong and eating well are all good signs that his little heart is healing.  

I ask that all who read this remember to say extra prayers for Preston as we prepare for surgery.  Pray that God guides the hands of the surgeons and that there is little scaring inside from previous surgeries.  Pray that God gives Preston strength and heals him quickly afterwards and that he has no pain.  

This boy is going to have such a wonderful story to tell someday and I for one am so happy to be sharing it with him!

2012 Flashback

As 2012 comes to a close and we prepare to ring in a new year I want to reflect on all of the memories we made this past year.

We started out in a new house that God helped us find.  In the town we live in decent rentals, especially single family homes, are hard to find.  After selling our large home we were afraid we would not find the space we would need, but the Lord came through giving us a 4 bedroom, 2 bathroom house.  Very clean and wonderful landlords.  We moved in January 6th and closed on the house we were selling the following week.

I am going to add that selling that house was something we wanted to do for a few years and once again a buyer came through giving us exactly what we wanted, actually a little more.  We had been praying for a sale and while I am still not sure about the timing on moving with what all we would face in 2012 but, God knows what he is doing so who are we to question him?

It seemed like as soon as we moved things with the pregnancy began to get difficult.  I found out shortly after that I had gestational diabetes and had to be put on a strict diet.  Since I had that they monitored me more closely and began to find signs of Downs Syndrome.  So the weekly trips to the doctor in Buffalo began.  I then began to have extreme swelling in my leg and ankles to the point where it was painful to walk.  2012 was not starting out so well!

On March 27th our world changed forever (in a good way!) when we welcomed Preston into our family!  Of course you know that lead to some very sad times as we had to send him off to surgery and come to terms with the fact that our precious boy does indeed have downs syndrome.  Also the 6 weeks I had to live in Buffalo with Preston who was in the NICU while my husband and daughter drove back and forth between home and the Ronald McDonald house.  That was stressful to say the least, but we got through it together and are stronger for it.

During the time in Buffalo we got a chance to see what a great community we have and how many precious people God had put in our lives as we received gifts, cards, money, and gift cards from so many people and organizations wanting to help our family in whatever way they could.  I have never been in a position like that before where I was at the receiving end of such kindness.  I remember feeling such a relief as all those gifts came in.  At the time I was only getting 60% of my paycheck due to the fact that I was on maternity leave.  Gas was near $4/gallon and going back and forth was putting a financial strain on us.  Not to mention that I was away from home and needed day to day things.  2012 showed me how wonderful people can be and what a great community I live in.

May 6th was the best when our precious boy finally got to come home with us.  He was instantly loved by so many and was such a blessing to have with us all of the time.  The first few days took some getting use to, but we made it and now we have mastered the colostomy bag!  That is one thing I never thought I would be learning in 2012!

July 7th was "Walk with Preston" a benefit for CARE for Children who have helped Preston so much with his development.  It was so emotional to see all the wonderful people in our community show up to show their love for Preston and help raise money for such a wonderful organization that helps so many children like preston who need a little extra boost to accomplish those early milestones.  Karli  who organized the event was able to raise a total of $12,000 over the next few months, showing again what wonderful friends we have.

If you did not have a chance yet, check out the awesome video about the event that was done by Tyler Little of Evoking Emotions.      http://vimeo.com/45874668

Following that overwhelming turnout at the walk, the Bob Gleason Memorial Golf tournament chose Preston as the recipient of the proceeds made from that event.  Again such overwhelming kindness from our wonderful community.  The weather might stink, but the people can't be beat!  :)

Lets not forget Kierstin!  She started her last year of Preschool.  She was a little hesitant about going back, but once she got back into the swing of things she loved it!  She has made such great friends at school and loves her teacher.  She just loves life!  She has a ton of energy and loves to play and make us laugh!  Her best friends are Daisy, Baby Jess and Preston.  She loves games, crafts and puzzles.  I could not have asked for a better daughter and a better big sister for Preston.  She is so passionate and loving.   There is no doubt that God had a plan when he knit this family together!

We celebrated Kierstin turning 5 in October with a big Ariel themed bowling bash with all of Kierstin's friends!  We all had a great time and Preston took a nice nap :)

November we were able to go to Florida to see my mom, brother, sister-in-law and adorable nephew.  We celebrated Thanksgiving with all of them and I got to feel my baby niece kick inside my sister-in laws belly.

On that trip Preston started doing an adorable fake laugh, that he now does all of the time.  So cute!  Also a big thing on that trip was Preston started eating every bottle all the time so we don't even use his feeding tube anymore!  Big for him and we all are so proud.

December Preston got two teeth and started doing so much better on his solid foods.  I am much cleaner at the end of the feedings now!  We all enjoyed a nice Christmas together as a family.  That about sums up our 2012 in a nutshell!  What started out a rough year has turned into our best year yet.  We are anxiously awaiting to see what great things God has in store for us in 2013!  Happy New Year to all!

Christmas 2012

Our family had the best Christmas!  We woke up to find Santa had paid us a visit.  Preston got lots of toys that light up as well as some books and Kierstin got the violin she had been wanting for the past 6 months!

Most importantly we celebrated the most precious gift, Christ's birth, together as a family!

Teamwork and Not Sweating the Small Stuff!

Being home with Preston was and still is amazing!  He was such a great sleeper, we did have to get up every 3 hours to feed him due to the weight gain issue, but we used his g-tube at night and let him get his beauty sleep.  Eric and I would alternate so we could get at least a 6 hour stretch of sleep at a time.  Team work is key with any baby, but especially so when you have one that needs some extra care.  That is pretty much how we got through the first few months home until we were able to fall into a more "normal" routine.

I want to say this, Eric is my rock.  He is the best daddy I could have ever asked for for my children.  His life totally changed when Kierstin entered the world and he became a father.  She immediately had him wrapped around her tiny finger.  Preston may need extra care, but Eric is never going to shy away from that like some men would.  He is with me 100% about wanting Preston to achieve all in life that he can and wants to.  Almost 15 years ago when we first met I know we never thought life would take us to having a child with special needs, but I know God placed us together and know that together we are stronger then we are apart.  Preston is going to accomplish amazing things in life and amaze all the critics out there, but know that he has two parents that are behind him all the way.

Raising any child is never an easy task, but the reward is oh so great.  I know the road ahead of us is not always going to be easy.  We have many challenges that lie ahead, but Preston has two parents that think the world of him.  We are both so excited to see what God has in store for his life.  He was given to us for a reason.  Downs Syndrome is not going to scare us.  It is not something we are going to fear, it is something we are going to embrace and our hope is to change the way people think about someone with this condition.

An older relative of mine was trying to encourage me (I think) and said "Don't ever say he has Down's Syndrome"  I was taken back a little but just kind of walked away.  I found that pretty offensive, but considering the age of the person and that fact that it really was said more in ignorance vs malice I chose to shut my mouth and not say anything (for those of you that know me you must be shocked!).

I don't want anyone to ever think that is something to be ashamed of.  He does have Down's Syndrome, it is a fact not something I am trying to hide.  I for one have decided that I like that he has Downs Syndrome.  Everyone always looks at me like I am crazy when I say that and my reply is always "What do you want me not to like it?"

He may take a little longer to catch on to some things in life that the rest of us take for granted, but when he does get it we are all going to be that much more excited!  I am learning not to sweat the little things anymore.  So what if the car got a dent in it?  So what that I threw my phone in the washer?  Is that the end of the world?  Absolutely not!  Anymore, I see people freaking out about simple things and I kind of want to say....REALLY?!?!?  I can't be too much of a critic, I use to be one of them, but I am learning.

So I am really not sure what this post is about, but hopefully you all got something out of it :)

Our baby is coming home at last!

So I got dressed and went into the hospital.  I went to the Doctor's station and talked to the Fellow and asked what was going on.  He wanted to go to the bedside to talk so we went and he said that the Physician working over the weekend (not the one we saw all week who told me we could go home) did not like that he did not put on enough weight over the last few days so they wanted to keep him longer.  My first question was "What is your plan to put more weight on him?"  His answer was they were going to increase the calories in his formula (all things I knew how to do from the class I took in formula mixing just two days ago).  I of course asked if there was anything else which there was not.  So my response was "I don't feel you are doing anything for him here that I cannot do at home so I am not sure why you feel that you need to keep him here"  The answer was that is just how we do it.  That infuriated me.  So I came back with "that does not makes sense to me so I will be discharging him and he will be going today.  I think the nurses and doctors were all taken back a bit by this, but I really did not care at that point.  The doctor stumbled over his words a bit and asked if I could at least give him 15 minutes so he could discuss this with the Attending Doctor.  I said yes, I am not taking him out this moment, but before the end of the day he will be going home.

So he left and of course we had a new nurse that never had cared for Preston before and I swear she thought she had to walk on eggshells around me.  I swore to her that I really was a sane person and that I just did not see the reasoning behind there decision and they failed to tell me anything they could do for him at the hospital that I could not do at home.  I still think she was scared of me.

The Physician Assistant that had been seeing us all week came in thinking we were still going home.  I told her what was happening and she kind of gave me a shocked look like she did not understand that either.  So while we were talking the fellow came back in and wanted to be sure I knew how to make the increased calorie formula.  I said yes, I am able to mix and your nutritionist went over all of that with me on Friday.  Then he said that the doctor approved and we would be discharged today.  I just said yes I know he will be.

So I had to be a huge bitch, but my baby was going home and we were aiming for right after his 3pm feeding!

They were so happy to see each other!

5 minutes after we left the hospital Kierstin asked "Why did you pick a boy?"

We also stopped at the Wendy's drive thru simply because we did that when we took Kierstin home!

  

Home at last just shy of 6 weeks after I left!  Now this is how life should be :)

Done Waiting

Waiting is so not my thing, but I was getting pretty good at it.  I felt the worst for Kierstin.  Before all of this I have never been away from her over night.  Never.  Now her and Eric were back and forth between PA and Buffalo and she could not even see her brother.  I was ready to be a family again.  All in one house....I would be happy with all in one state!

Preston was getting better, he had to finish up the antibiotic but he only had a week left on it.  I decided to get the ball rolling and asked the attending doctor what the exit plan was.  I did not feel there was much more they could do at this point. She did agree with me and said that as long as nothing else went wrong he may be able to go home once he was done with the antibiotic if Surgery agreed.  So then I talked with surgery and they seemed ok with that plan too.  YAY!

Lots of things were annoying me at this point....I kind of got sick of needless poking and prodding at my baby.  I did not feel the need for more IV's in his hands when he had an IV in his leg already that they could use.  I started voicing my opinion more loudly and even kicked out a few doctors when they thought they needed to do senseless procedures. I posted notes on his crib on what they could and could not do with out my permission.  I am sure they were ready to get rid of me!

I kept the fact he was going home on the down low because I have seen other babies who were ready and then some sort of set back would occur and plan canceled.  So as to not jinx us I just told a few people and crossed my fingers and prayed that nothing new would arise.

Finally on Thursday the Dr. told me she was planning on releasing him on Sunday after he received his last dose of antibiotic.  We were so ecstatic!  We have been waiting for what seemed like forever to bring our boy home and the day was near!  Saturday night we went and got him the cutest little going home outfit from Gymboree.  We even got him a "little brother" undershirt to wear.

We went back to the Ronald McDonald house and packed up all of our stuff....boy over 6 weeks we sure accumulated a lot of stuff in our small room.  That night we went to the hospital a final time and kissed our boy good night.  Walking out of that hall was so much different, knowing the next night we would be home all together.

So bright and early the next morning, I woke up and saw I had a message on my phone.  They decided that due to him not gaining weight as much as they liked they were not going to let him come home.  Eric was upset, not me.  I thought that was ridiculous and was no longer letting them call the shots.  I was going to go in there and take my boy home.