Sunday, February 17, 2013

New Normal and Celebrations/Milestones the 1st Year


I feel that I have caught up on Preston's journey coming home and it would take me MONTHS to fill in the gaps with details from his arrival home to now. Last summer was such a roller coaster and I don't want to relive some of the events. I am choosing to focus on the NOW and all of my posts going forward (after this one) will be about what is going on NOW. Feels soooo good to be in a such a great place! It has been therapeutic to write and I realize how much I have forgotten (some good and some bad). Crazy how time flies! So cliche but so true!

Below are some pics from last Summer and Fall as we adapted to our 'new normal' life. The biggest adjustment was a nurse being in our home for much of the day and night. Pretty sure everyone has seen me in every light by now. There truly is no privacy! I wake up to a nurse here and go to bed with one here. I was so bitter and mad in the beginning but when you are desperate for help in caring for your baby, you become so GRATEFUL and the bitterness and anger dissipate. We had 24/7 care for Preston for the 1st 2 weeks he came home. Since then the hrs decrease over time. Now we have our main day nurse, Jessica, from 7-3 M-F and our main night nurse, Amy, from 10-6 M-F. Tim sleeps in Preston's room on the weekends to suction him (we don't want to take the chance of not hearing him on the monitor from our bedroom) so we are REALLY grateful for weekday night nursing. Getting a good night sleep is so important. Plus, what couple wants to sleep in separate beds?? We remind ourselves this is only temporary! :) I was terrified of our hours decreasing so much but now I see how much better it has been for us to have 'family time' and privacy. Our home was once so quiet and private.....just the way Tim and I preferred it. God must have felt that He really needed to work on me this past year because our life has been more than an open book and I can't imagine it any other way. I am truly a changed person and for the better. I wouldn't wish all of the tragic events on my baby boy for anything but I wouldn't change all of the wonderful things that have transpired from them either. I can honestly say I like myself so much more now. I am more giving, selfless, compassionate, understanding, patient, friendly, open and honest! I am not perfect and nobody is and I still have alot growing to do but I am grateful for the 'growing pains' this caused and shaping me into who I am today.  I needed this and didn't even realize it!

The other adjustment has been the fact that Preston can NEVER be left unattended EVER.  Now that he is bigger, this is not as much of a 'panic' or concern as it was last summer. It wasn't even safe for just me or Tim to be left with boys boys during the young months of their life alone. If we were feeding Reid and Preston needing suctioning, it was complicated. They were just too little to chance it and he was too fragile. His video monitor is with us no matter where we go in the house during naps so if he needs suctioning, we can hear him and see him. Since trache babies are 'silent' when crying etc it was imparitive we have a video monitor to see him. This meant that on the weekends if the boys were napping, Tim or I had to be on 'video' duty at all times to make sure he was okay. We became a great team! We don't think twice about this now....its our 'new normal' :) Now that the boys are bigger, Reid has become very curious about P's trache and has pulled it out once (bless nurse Amy's heart for being the one to experience this) and yanked on it several times. FUN TIMES! Ugh! Not to mention the fact that Preston has pulled his trache multiple times. So they can not be left alone together for a split second. His nurses used to sit in his room during naps and betime (all night long) but as he has gotten older, i requested they sit in our living room and watch him on the video monitor so he can be as 'normal' as possible as he becomes aware that someone is in his room while sleeping. Boy am I glad we did this sooner rather than later because once his trache comes out this summer (God willing) he will be used to not having anyone in his room. I had visions of me sitting in there trying to get him to sleep once his trache was out and we were finding yet another 'new normal.' NO THANK YOU! That didn't seem fun at all.

As we embark on their 15 month milestone (and summer is around the corner), I reflect on the following celebrations that have become a New Normal for us and look forward to this summer in a BIG way!

*We celebrated the 1 year Anniversary of Jessica being our primary day nurse. Preston is her little buddy and they have quite the bond!

*We celebrate the 1 year Anniversary of Amy being our primary night nurse. She is like his 2nd mama! These women have been angels in our life and its fun to see Reid create a bond with them too! He sure loves having them here too! :)

*We are BEYOND grateful for respite care days thru our insurance (we get 7 days a year with 24/7 care for Preston by his primary nurses).....I was able to attend my annual MK Seminar for 1 day in Dallas last July while Tim had help for Preston 24 hrs a day. It was the BEST thing for me to get a day away and clear my head and get a break! Tim and I were able to take a wknd trip to Weston before school started. It was heaven! We love road trips and the time spent together was priceless. Lastly, we were blessed with the opportunity to go in October to a wedding in Florida and re-connect and spend time with dear friends. I know some people were thinking how could we possibly leave Preston and be that far away but he was in the BEST hands and we felt it was crucial for our marriage to have this time together after all that we had been through. It's sad to say but we were and still are so used to be away from them (since we were from the very beginning) that it isn't that hard for us. I guess it's part of being nicu parents. We still love our boys unconditionally but in the long run, this has been a gift to our marriage. There is a obviously a reason why insurance companies give respite days and we had all of the support from our family to make these trips possible! We were very appreciative!

*We no longer think twice about taking all of Preston's 'extras' with us when we leave the house. The suction bag is like our 3rd child LOL It seemed daunting a year ago to go anywhere because the boys were so little, ate every 4 hours (never knowing how Preston would respond to his bottle and if he would need it tube fed), and he required suctioning much more frequently. But we did it anyway! We strived to be as 'normal' as possible and told ourselves that we would do everything we could to make this happen. It wasn't easy but now it seems like a breeze!

What a difference a year makes and we celebrate these milestones!

I am happy to announce we are in such a GREAT place today! The boys are walking and talking. Preston is talking but instead of words, its noises but you can tell what he is saying and mouthing with his lips! It's wonderful. Reid is saying Mama, Dada, more, all done, up, down, and Preston signs more and all done. Both boys know where their belly button and nose are. They raise their arms up for 'touch down' and put their hands to their ears when we ask them "who are you calling?" They love reading books and my favorite part of the day is morning snuggles after breakfast while watching Elmo or Veggie Tales. I was blessed with 2 snuggle bunnies and I will take every second of it! This age is so precious!!! We also heard Preston's first giggle with the speaking valve! The best sound I have ever heard! :)

The final count down is on.....we leave for Cincinnati on March 4th and I think about this upcoming trip every single day (sometimes every hour :)). The anticipation is killing us! I have SO many questions for Dr Rutter and remain so hopeful for GREAT news for Preston!

I leave you with pictures to recap this past year and can't wait to update you with news from our trip!


My bald little men getting used to each other again.


At the dr office for a check up and Preston is slowly catching up to Reid's size.

Our FIRST date night since the boys were born and home.........Lady A Concert :)


Loved their walks while I was working on shedding my baby weight



Almost sitting up

1st time going to dinner at their Godparents house

1st play date with our friend Grant
My 3 boys

A weekend trip to Weston for a much needed break! So grateful for family living so close to watch Reid and our amazing nurses to watch Preston!

Chuck e Cheese for Will's 4th b-day party! I remember this being the first time going somewhere that seemed to be much smoother and we 'got this' :)

First time to a 'real store' shopping! Nebraska Furniture Mart :) This was where we met our friends, the Kreinbrings, and so grateful for this day! I truly believe God put us in each other's paths that day! They were the reason we decided to seek a 2nd opinion for Preston out of state.
Baptism
Amy came to see Preston get baptized.

My Grandma's b-day party

This day marked my total weight loss of 80lbs since the boys were born.  I felt so much better! They were 9 months old.

1st day with his official hearing aid after trialing 3 different kinds! 

Someone fell in love with their Auntie over the summer!

More walks in our new stroller and glad to see Fall arrive!
1st plastic surgery on his left ear to remove skin tag and rebuild his tragus.



Special visit from Amy......a Winnie the Pooh and book make everything better!

Special visit from Alex.......a super soft monkey has now become his bff!

Our first group play date and I decided to take Preston and nurse Jessica so we could all get out and enjoy this day! My 3 wonderful sorority sisters who are friends for life!



Before I share these next few pictures.......I want to thank EVERYONE in the Mary Kay community for raising money for Preston's hearing aid. It was unexpected and Tim and I were speechless. We felt that before cold/flu/rsv season started and we had to hibernate from germs, we should take the boys to one of my MK events in the Fall and have everyone meet them (especially Preston) so they could see what they donated their money towards! 



Their God mother, Cindy Tollefson, (aka Mama Tollie) obviously has this 'twin thing' down by juggling both boys! She is also one of my sister Sales Directors! Special night for sure!

One of my dearest friends, Vicki Lindsay, introducing Preston to everyone! He loved the attention.



Twinkies....attempting to get into Preston's suction bag.

Just another day in paradise

The boys first fire pit experience......one of our favorite things to do in Fall.


Working on Preston's OT suggestions using the chair cushion to get him to pull up and stand.

I got TONS of snuggles after being away from the boys (at Fall Retreat) for 2 nights and 3 days! 
1st Halloween

The boys turn 1! We made it the first year and have so much to celebrate!
At their 1st Birthday Party......the boys were beat!
Auntie Kay Kay

Cathy

Auntie Kimmy

GGA

The Walker/Krebs clan

Grandpa and Grandma Walker

Papa and Maama

Walker/Krebs clan again at Bauer's 1st B-day!
Preston ended up staying the night at KU for a severe ear infection in his right ear (the one that is closed)
He was miserable and what is a mom to do at 2am with a little guy who wants snuggles but hooked up to the pulsox and IV? Crawl into his peds crib with him of course! :) Always an adventure!!!!


Special visitors.....Auntie Kay Kay, Cousin Ava and Will! They brought Preston a balloon, tiger, and momma got some snacks to munch on!

Merry Christmas!






We wrapped up 2012 with Preston's 2nd ear surgery on Dec 26th to fix the deformity on his right ear. It looks amazing!

Getting ready to be discharged if we could get that darn IV out of his head.....they brought in the music therapist to distract him and it worked :)
Here we are TODAY! Both boys are happy, healthy, and we have managed to dodge sickness and cold this winter except a minor episode of the stomach bug. Preston escaped it- such a BLESSING!!! Here's to a wonderful 2013!

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