2018 Goals and Smoothies

Finally getting this amazing smoothie posted for you all to enjoy! Let me know what you think.

But before we get to that I know most people start their New Years resolutions January 1st ( I hear thats the trendy thing to do) I however spend all of January trying to figure out my life and what Goals I have for myself, my family, and my business. I seem to look at February 1st as my fresh start and my beginning goal date. So I am going to post some of those goals here so maybe I can have more accountability than I have in the past.

Personal:
1. I am going to finally take the leap and start BBG today. Send prayers because this girl is super out of shape and nervous to try and get back in the swing of things. I will keep you updated on my progress. I am not overweight but I struggle with my health and overall being able to keep up with my kids. Most importantly this is for my self care and to finally feel better.

2. I am wanting to be more active in a positive way on my social media accounts. This seems counterproductive to most people trying to back off from social media but I'll explain my reasons for this one. It's very easy to feel secluded as a stay at home mom and this is my way to connect and put myself out there even when it's uncomfortable.

3. I have also set some pretty huge goals in my business and it's scary for me but I am quickly pushing 35 and if I've learned anything it's that if I don't push my comfort zone and really shoot for the stars I will remain dormant and I've spent enough years spinning my wheels.

4. My final goal is going to be to make some changes for my family's overall well being which include some pretty big things that we have in the works and I am working up the courage to share our journey.

So for those of you that have taken the time to hear me out Thank you! and as promised the best smoothie recipe you'll ever try......guaranteed. We made this gluten/soy/dairy free for Kylie who is the first in our family to be getting switched over...again we could use some prayers cause this girl likes her carbs.

Breakfast Smoothie

4 oz yogurt (we did non dairy yogurt)

4 oz dark berries

7-8 oz Almond milk

1-2 Tbsp raw unpasteurized honey

1/2 orange

handful of baby spinach

1-2 tsp coconut oil or coconut butter

This recipe was courtesy of our amazing functional medicine doctor....Enjoy!

Dusting off the old blog..Again!

So apparently every year I plan to give this space some more attention and then funny thing life happens. I miss this space and the way it helps me to laugh at the madness, appreciate the accomplishments, and watch my little family grow. I think first things first we are in serious need of a name change, huh? Kylie's journey was the original purpose for this blog but we've evolved so much since then and we have quite the chaos and craziness and funny thing we have had it mentioned to us more than you can imagine how we should blog about our day to day because let's be honest some of this stuff we coldn't make up if we tried. I am making it my mission to document some of the good, the bad, the ugly, and everything in between. I am so grateful people want to go on this journey with us and this girl could use some accountability so here we go!

Time flies when you're having fun

WOW 2017 Huh?? It is hard to believe it has been 4 1/2 years since I've visited this little space of mine. So much has changed for our family since I last checked in. We have expanded our family and now have 4 amazing young girls in our little crew. McKayli was born in March of 2013 just 19 months younger than Kylie and to say having them that close in age while Kylie went through everything she has gone through would be an understatement but apparently we are brave or have completely lost our shit because we did it again and added Olivia to our brood in November of 2016. I have wanted to revisit this space for so long but life got away from me but after much encouragement and quite a few people asking I am back and hoping to give more dedication to sharing bits and pieces of life as a Longfellow and let me tell you with 4 girls in the house three of which are 5 and under and a teenager there is never a dull moment. I hope to be able to fill in some of the blanks of what the last four years have been like for us as well as what Kylie's journey has been like. I can't remember what our count was for hospitalizations and surgeries at last post but as of now we are at about 27 hospitalizations and she just had her 10th surgery in November. She started Kindergarten this year......SERIOUSLY?? How is our baby girl who has been through so much grown into this amazing little Kindergartner? She learned to write her own name right before Christmas break and is so in love with learning and growing and catching up with all the other kids in her class. You know like normal kid stuff.

This is our little miracle baby now. She's amazing and so strong and most importantly full of life.

I think I will start to take this blog in a little different direction and just open up our door and share some tid bits of what life is like for us now. Like starting out 2017 with Mac having croup because that's just how we roll. I look forward to being back in this space and the joy I get out of sharing the ups, downs, and in between. It may not always be the prettiest but it's our crazy mess and I wouldn't change it for anything.
   

Well here we are.......We have been home for a few weeks now. We were able to bring Ky home a few hours short of 15 days in the hospital. She has had a terrible recovery and it has been a very trying time for our family. She is not tolerating the volume amount needed to grow and thrive so they have tried going up on calories per feed and unfortunately that is proving unsuccessful as well. On our last few days at the hospital one of the doctors that had only seen Ky twice suggested that she should be seeing a genetic specialist and now weeks later all our team agrees and is on board and we leave July 4th for Seattle children's hospital. We   will be meeting with biochemical genetics, a nutritionist, a G.I., and will be making a return trip to meet with medical genetics. This has really thrown us all for a loop as we thought going in for her fundo/ nissen that we were kind of at the end and she was going to be able to start progressing and thriving and unfortunately reality has been the complete opposite. She has completely stopped eating orally and is not growing well and has dropped drastically on the growth charts. Her doctor is saying she now has what's called "dumping syndrome" which is causing another set of problems. Her little body is very depleted and weak and in attempt to try and get her sleeping she was given a medication which was supposed to help her get some good sleep and start to heal her body. The first night we gave it to her the following morning she had a seizure. That really was a tough experience for both me and Steven to have to go through with her and be so helpless. She was very sleepy the next day but she seems to not be having any effects from it. We are praying for some answers in  Seattle that someone can finally figure out why our little girl is struggling so bad.  She has always been such a happy, fun loving little  thing and I just want that back. This is a broad breakdown on what the last few weeks have been like for us but it is very discouraging when the doctors keep saying she is unique and complex but not really coming up with solutions but all agreeing there is something they are missing. She again through it all has stayed as string as she can and still has that sweet little smile that can light up a whole room. Now how to give her a shot at a normal life. I just really want to send out love and blessing to all the amazing friends and family who have not only stood by us through this whole experience but have prayed diligently for us, arranged meals for my family while we were in the hospital and brought meals, to those who came and sat and talked and  visited with me so I could just talk. I usually send out thank you cards or send messages or at the very least I respond to messages but lately I haven't been able to bring myself to focus on anything else but my girls. To all of you who have been there and been that person and then some I am so grateful from the bottom of my heart to all of you and don't give up on me because even though I haven't been good with responding all the love and unconditional support is what is helping me through and I love everyone god has been generous enough to give me in my life. I have hope that this isn't as good as it gets and this will one day be a memory of a triumph.

Still here!!!

  Here we are days 8-12. Wow the days fly by. I got a little behind because Ky had a rough turn starting Sunday night. She stopped handling feeds and started retching. That went on through Monday and we eventually had to stop her feeds all together and she was put back on an IV and pedialyte. She had a really tough time and a lot of pain and wasn't sleeping. She started to perk back up today and they are trying to start feeds back up again this evening. We had a meeting with the surgeon, dietician, social worker, patient care coordinator, and nurse. The GI couldn't make it but we outlined a plan since we have been continually ending up back at square one as far as we are right where we were when we got admitted 12 days ago. This frustration was definitely building just due to feeling like even after all these surgeries we are still a lot farther behind than we would like to be. Our next step is having to put in a GJ tube which instead of feeding into her stomach will feed directly into her intestine. The point of that is basically just bypassing her stomach which is not stretching enough to tolerate the amount of formula needed to keep her hydrated let alone give calories. I am trying to keep my positive outlook but some days it's a challenge. I just keep feeling like we are not making progress. They just keep telling us she is complex and things aren't going according to plan because of that. We did get our surgeon to agree to come see her daily himself instead of sending his partners because I couldn't handle all the cooks in the kitchen changing things adding things it was all adding to my stress about the whole situation. We would like to be home by this weekend and let her recover at home but we aren't sure which route is going to get us there. Her cdif infection has passed and we are at least off isolation and able to take her outside. She is such a trooper and loves her wagon rides around the halls. We are so incredibly blessed with all the meals, prayers, visits, and support.

Our miracle baby on days 3-7

Welcome to days 3-7. Days 3 and 4 we not very eventful. We were just pushing IV fluids and trying to get her healthy enough for surgery. Monday afternoon she was scheduled and we took her down to pre-op ready for her to get it done when her surgeon got stuck on a tough case and decided to put her off another day. So Tuesday was a not so patient waiting day to see if she was going to get it done then due to her being an on call case. Her on call time came and went and we started to loose hope that she was going to get it then either. Well a few hours passed and her surgeon called up for her and they took her down and prepped her. She went in at 4 Tuesday afternoon and surgery took 6 hours for the nissen and they also found a hiatial hernia which was causing her stomach to go up into her chest when she was retching. So basically they sewed her stomach in place and wrapped the top of her stomach around her esophagus. She came out of surgery well (better than the last 3 times). She was given narcotic pain meds and slept for about a day and a half after surgery. She has been able to be off the narcotics for a few hours now and finally sat up yesterday so I after a very long wait got to hold her for just a little bit. Today she is being closely monitored for pneumonia because she has a bad cough and fluid sounds in her lungs. She is higher risk because of her weakened immune system. We were also told during surgery they found her very first surgery which was a cleft repair is coming undone and will have to be fixed. So we are waiting to hear when they are going to want to do that. That will be surgery #6. She has still not been able to clear her cdif which is also slowing her recovery a little bit. Overall she is actually doing better than expected. We are waiting for some answers to see when we will be able to bring her home again. This surgery is supposed to make a big difference and we are anxious to see what our new path is going to bring for us. We have such an amazing support system and could not be more blessed. I know a lot of people see the tough side of this but God blessed us with Kylie for a reason and our lives are better for having her and all of this is worth it. We are going to look back at all this one day and she is going to laugh at how much of a little stinker she was. Thank God for miracles!

Day 1 and 2

   Well here we are in room 4004. We haven't had this room yet. We came in Friday morning at 6 am for Kylie's fondo. We were in pre-op waiting for the doctor when the anesthesiologist came to check on Ky and concluded she was too sick to go forth with surgery and postponed it. Her surgeon came in and admitted her to a room and started an IV. They wanted to test her for a bacterial infection that attacks the intestines and moves throughout her body and causes her to have diarrhea and eventually severe dehydration. My frustration with all this was that I had called her "team" of doctors and she not only went in for two appts. I talked to them five times in a week and a half and said she was severely dehydrated and not taking feeds and throwing up as well as diarrhea and severe fussiness (which is not like Ky at all). She lost a pound and a half over 9 days and for most of the week she only got pedialyte because she would throw up her formula. They kept telling me to just continue pushing pedialyte and keep her hydrated. Needless to say none of that worked and she was finally tested and found to have the bacterial infection (called CDIF) that started attacking when she was given antibiotics for an infection of her G tube. Her blood work showed very low levels and she needed hydrating which as of this morning we have accomplished and they are the low range of normal. The new antibiotics are treating her now and we are hoping to try and get surgery done tomorrow afternoon. The challenge is that they have to give her the antibiotics for her surgery that caused her to get sick in the first place so she is in a vicious circle. She has perked up quite a bit today and you can tell she is trying to feel better. We are hoping to try  a feed with formula here in about an hour without throwing up. The last 48 hours haven't been what we expected as we were supposed to be recovering from surgery right now and there are still a lot of undecideds about the next step. We are just so happy she is finally getting the care she needs and making progress towards getting healthy. The doctors will meet in the morning and come up with a plan of attack. We have been shown so much love, support, and generosity from our friends, family, and nurses. Day 1 & 2 down..........more updates to come.