Fall Fun...or Fall Chaos...however you want to look at it

 Well hello friends! It feels like I only just blinked btw the last time I blogged but in reality its almost been a month! Even though my days consist of pumping, snuggling Pax, talking to doctors, and pretty much sitting in the same room they really do fly by. Good thing I enjoy routine bc I am killing it at this whole NICU mom life thing :)

Easton and Benjamin are seriously the two best kids ever! Their worlds have been so uprooted and non-routine for 4 + weeks now and other than taking turns being sick they have been so patient with us (mostly me!). Benny had a stomach bug a few weeks back. My mom and mom-in law tag teamed taking care of him. He got his blankie (which looks like a rag at this point) dirty (with poop) and Brian's mom had to wash it. He does not handle being without it well and literally the only thing he found that made him calm down was the dust mop cover......seriously only Ben!

loving his new dust mop cover friend :)

 Ben recovered after a few days and then it was Eastons turn with the bug. He would wake up randomly in the middle of the night and throw up once and then have diarrhea for the following couple days. Once he felt "better" the cycle would start all over again. Its never fun for parents to be scrubbing throw up off couch cushions or bathroom floors at 1am and even less fun when the parents (US!) have been taking turns going to and from the hospital and not sleeping well anyways. Since I am currently getting up a few times a night to pump I am used to the incremental sleeping, but mix that with high emotions at all times and you get a seriously exhausted mommy. Luckily btw Brians flexible boss and both sets of grandparents around we were able to make it work without me having to spend a day away from Paxton.

The boys are also exhausted. They are getting to do a lot of fun things with friends and family, but their nights are much later than normal and the break from routine wears on them. One night I found Easton asleep with my Bible b/c he was saying prayers for his baby brother Paxton! Just melts our hearts. Paxton is so lucky to have such amazing and compassionate big brothers. They will be the best motivators as well as protectors for him from here on out.

tuckered out after all that praying

Pumpkin Patch with Mary Pat

 My mom had planned to take Easton to his first Husker game. This has been her dream since she found out that she would be having a grandson 5 years ago. She got two extra tickets next to her and my dads seats and Brian and E went down with them October 1st. Originally this was to give me a little break as well since I was supposed to be super pregnant. Once again in-laws to the rescue so Brian could still have a fun day with Easton and I could still spend my day at the hospital. It was so good for Easton to get that special 1x1 time with Brian and it was good for Brian to get out and do something "normal". My mom was in HEAVEN sharing her love of Huskers, football, tailgating, and UNL with Easton. Brian had fun showing Easton some of the buildings he took classes in as well.

3 of my favorite boys :)

This is how Paxton and I spent Husker Saturday :)

So we did get the diagnosis back on Paxton and it was positive. It was a super hard day, but there were also many silver linings to it including the amazing support system that we have. If you don't follow my blog on Paxton specifically let me know as Id love to share it with you and it goes into everything in a much more detailed manner. We were also able to connect with a local family who has a 6 year old son (Jake) with the same thing. He unfortunately also has another genetic disorder as well but hes just a normal kid and it was so great to connect with his parents and meet him. Jake's parents, Paige and Matt, are literally our angels. They have been coming up to the hospital randomly just to check in and answer any questions, give guidance, sit with us during doctors apts, bring us dinner, and really just be a giant means of support as we start learning more about Paxton's future. Of course my husband is a rock star too! Between his love for reading, researching, and becoming an expert on anything he's passionate about and his degree in Biology Paxton really hit the jackpot having him as a dad! Brian has already set us up with the leading specialist for this in Florida and she's agreed to be our endocrinologist. He's talking to a medical research scientist who started her own foundation and has started doing drug trials on medication that will be a game changer for these kids. Paxtons future looks so promising. A lot of the things that current children struggle with might not even be issues for Paxton providing that these drugs in the works are approved. The first part of his little life will be more muscular struggles. He will hit all milestones that his brothers did just at a later date. We will work with Physical Therapy, Occupational Therapy, and Speech Therapy right when we get home. They will actually come to our house for the first 3 years to work with him. Next week Paxton will get a feeding tube surgical put in and then we will be home by Halloween. Again, more details on Paxton's own blog.

Jake - one of Paxtons many guides on this new journey

A small portion of the pantry items my work team sent to our house

 Paxton was moved to a big boy bed once he was off oxygen for a few days. Its so nice having one less chord and tube attached to his beautiful face. They also moved us to a new floor and much bigger room. Paxton and I love all the space (and the fact that the room has its own bathroom). We have started him on a coenzyme that has helped him be awake more which is nice for mom and dad :) Hes gaining weight at a great pace (hes actually now above Ben's birth weight). Since muscle strength is his biggest set back at this stage of his life we need to get the feeding tube surgery. We will still work with him taking a bottle but he needs to be fed a certain caloric amount to continue to grow and there is no possible way to do that all via bottle yet. He can spend up to 20 min sucking on the nipple of the bottle and only take 5ml or less. His suck muscle strength just isn't that strong yet. Once we get him to Florida to see the specialist (which will hopefully be in the next month or so) we can start him on Human Growth Hormone injections which will help give him a lot of the strength he is now lacking. The injections help his body make muscle as that's something these kids struggle with.

open eyes!

 The boys and I spent a lot of time snuggling and playing at night when I come home from being with Paxton. No matter how tired I may be after a day at the hospital and a night of little sleep btw pump sessions I just need to be a mom to these guys.....they deserve it and truthfully it feeds my soul right now. Easton is just the sweetest and Ben is pure entertainment. Easton is so much like Brian and Ben is...well Ben is just Ben. You cant describe him in words....hes an experience :) I am so excited to see how great they are going to be with lil Pax.

Last weekend my parents offered to take the boys overnight Friday so that Brian and I could at least have a night where we aren't being interrupted by a sick kid, bad dreams, need for water at 2am, etc. Even though I still cant sleep through the night due to breastfeeding it was nice to come home at the end of the day and only have myself to take care of. Brian and I got a chance to have a bite to eat and a drink together btw me coming home from the hospital and him going to the hospital. Lately our conversations have mostly been via phone or text so sitting next to him and talking felt great! (the wine tasted pretty good too lol).

Nana made a living room fort for the boys to play and sleep in

Brian's brother and wife had the boys over for dinner and to make carmel apples also!

 The weekends are much harder than the weeks as we don't have Mary Pat to shoulder the main burden of entertaining out monkeys. Saturday I spent the day at the hospital while Brian and the boys hung out and then we swapped around dinner time. The boys and I painted pumpkins and added to our already extensive outdoor Halloween decorations. We are a family that loves Halloween so any excuse to buy more décor (like feeling guilty about not spending more time with these guys right now) and Ill take it!

 Sunday we took a break from hospital life. Our first one in 4 weeks to be exact. Brian came up super early to see Pax while I got the boys ready for our day at Vala's Pumpkin Patch. We love the pumpkin patch and we have been looking forward to taking the boys all year. They had a blast and its always nice to see them playing so well together. Of course towards the end of our stay Benny wanted to be carried and Eastons legs stopped working....which is how we knew it was time to go home! We played at the patch for three hours and then Easton and I spent the rest of the afternoon in Paxton's room.

It was so fun having Easton with me all afternoon at the hospital. We haven't had a lot of 1x1 time lately and he was SO GOOD! We were up here for at least 4 hours and he never once told me he was bored or that he wanted to go home. My parents came up for a bit so my mom took him downstairs to get some food, but other than that he stayed in the room with me the entire time. He played on his tablet, practiced his letters, and colored pictures.....He also read books to Paxton. At one point I was feeding Paxton so I couldn't get up and Easton of course used this opportunity to tell me he had to poop. The toilet in our room's bathroom is pretty tall but he said he could do it. He grabbed one of Paxton's board books and went into the bathroom (I swear boys are just programmed to need reading material in order to poop). I kept hearing the book slam to the floor. Apparently getting up on the toilet while holding onto the book is tougher than it looks :) The weekends are pretty quiet in the NICU world so its always much more peaceful to spend an afternoon cuddling Paxton on a Saturday or Sunday. I was so happy Easton wanted to come with me; he couldn't wait to go home and tell everyone about helping out with Paxton!

 I am a little sad to know that I will be leaving Methodist next week. There are some nurses that are consistent with Paxton and have been since week 1 and I will miss them terribly. There is a comfort and peace knowing he is someplace that monitors him and cares for him 24/7 with top of the line equipment and knowledge. I am sure I will be a mess those first couple nights. We will be okay, but this hospital is incredible. They have treated us like family and made our stay feel like a home away from home. I know there are doctors and nurses that we will keep in contact with and I cant wait until Paxton's older to tell him about all the love and care he received while living in the NICU his first month of life!