Christmas Day

Our Christmas was absolutely wonderful this year! We started off this day of holy celebration with mass. Our whole family was in attendance which made it very special for me. Nicholas and Ella were trying to sing along with the Christmas hymns that they likely know quite well by now considering how much they have heard them at home this past week. After mass we went over to my parent's house for brunch and to open gifts. After we stuffed ourselves full of eggs, bacon, hash browns, danish, and fruit the kids were very excited to open their gifts. Ella was most excited about her lotion and bath wash and carried them around with her everywhere she went. Nicholas loved his HUGE Curious George monkey that Eric & Tina bought for him. Now he has a small George and a big one and he thinks it is so awesome! We all went home in the afternoon so the kids could rest and went back over to my parents house later Christmas evening for dinner. We had ham, homemade macaroni and cheese, asparagus, and a fruit salad which was delicious. We ended the night playing Apples to Apples again which is a new family favorite. Our family was very spoiled this year with many things. Gifts and being surrounded by loved ones was wonderful but I think we would all agree that being home and having Nicholas feeling GREAT was the BEST part of Christmas by far.

Christmas Eve

We had a wonderful Christmas eve with our families. In the early afternoon Jeff's sister's family came over for a quick visit and gift exchange. Later in the evening my family came over and we had a yummy dinner together, talked and laughed, and ended the evening playing the board game Apples to Apples. Then we tucked the kids into bed and waited for Santa to arrive and bring our very good children their gifts.

Hello, Santa!

Tonight the kids got a very special visit at our home from Santa Claus! Nicholas was thrilled to see him again and enjoyed talking to him. He asked him all kinds of questions, "What is under your hat?" and "Where is your home?" and "Where are the elves?" (It took us awhile to figure elves out). He told Santa he wants a car for Christmas and liked sitting by him to get his picture taken. Santa brought a red light to light up the kids' noses like Rudolph and they each got a stuffed bear and a candy cane. Ella opened her candy cane in no time and enjoyed a bit of peppermint goodness before she dropped it on the floor. Ella was not into Santa at all as you can tell by the photos above. I can't say we were surprised though, I don't think too many kids her age are fond of him. It was a wonderful visit, thank you to Grandma Stephanie for coordinating it for us!!

Pixi Mask

Before Nicholas left the hospital on Friday, our DME brought us his new nebulizer and the awesome Pixi mask that he is wearing in the photos above. It is a super tiny mask that fits right over his nose and doesn't obstruct his vision whatsoever like his larger nasal mask does. He really, really likes it as he can watch his favorite DVDs and see them so much better than before. It seems to fit his face really well and doesn't have much of a leak so it's a keeper!

Decking the Halls

We had a wonderful weekend together as a family. We spent most of the weekend decorating for Christmas. Jeff got all of our Christmas boxes out of the attic on Saturday and today we went and got our tree. It is only a three-foot tree, but Jeff put it up on a crate so it looks taller. So far, Ella doesn't seem too interested in it. She just wants to make out with our Santa all the time! She is so funny...she goes over to the Santa that I placed on the fireplace hearth and she kisses his lips. It cracks us up. On Wednesday the kids are getting a visit from Santa and I wonder if she will want to kiss a real one as much as a fake one? Or maybe she will cry and run away? I think the latter is probably more accurate.

Nicholas has been his happy, silly, smiley self all weekend and I am so glad we asked to come home when we did. We all had enough of the hospital and my mother's tuition was spot on-being at home does wonders for a person's psyche and overall well being.

I was also able to get some more Christmas shopping this evening. I plan to go one last time tomorrow night with my mom after the kids go to bed and get everything checked off my list. I am heading to bed tonight with a heart full of Christmas joy.

Under One Roof

After sixteen days in the hospital, which beat Nicholas's last stay by one day, we are finally home! Nicholas was discharged Friday night and was thrilled to be home! I think for the first hour or so that we were home, he was kind of in shock (and super tired) because he kept looking around saying, "home" like he couldn't quite believe it. I know he was finally relived to be out of the hospital and sleep in his own bed, in his comfy pajamas, listening to his Coldplay lullaby CD.

Today was a wonderful day spent together as a family. Nicholas and Ella just wanted to play with their balloons all day and I jokingly told Jeff that we could have saved ourselves a good chunk of change on Christmas gifts if we had realized how much they both loved helium-filled balloons before we started shopping.

It was nice to do normal things together: eat breakfast, talk and laugh, decorate for Christmas...things I would have taken for granted before our long hospital stay. Now these moments feel like gifts-small treasures that I tuck away in my memory and enjoy immensely while they are happening. To be honest, we really thought that Nicholas may not survive this hospital stay. There were several times that we were on our knees pleading with God to allow us more time with our son. Seeing our child so fragile and so, so sick was extremely heart wrenching and it is nothing we hope to experience again anytime soon. Fortunately, Nicholas is the toughest little kid I have ever met and he continued to surprise and inspire us (and his doctors and nurses) time and time again. Obviously because Nicholas has SMA, his life will most likely be shorter than we would hope, but it puts life in perspective and makes us realize what is important, and for us that is only one thing: to show our love for each other as much as possible and to create as many wonderful memories as we can in the time we have together as a family.

I already got the ONLY thing I wanted this year for Christmas-to be home together as a family and to have our son feeling much more like his happy, joyful, sweet little self. God is good.

Ella is 15 Months & Nicholas Update

Today Ella is fifteen months old and because we have been with Nicholas in the hospital for the past two weeks, I have not taken any recent photos of our little munchkin. So, being the crazy mom that I am, I snuck into her room tonight while she was sleeping and got this adorable photo of her. I am glad I did it because 1) she didn't wake up like I expected her to and 2) I can never get a good photo of her sleeping.

She is a sweet little girl and it is so, so tough to be away from her all the time while I am at the hospital with Nicholas. I miss being around her and she has been a bit moody with me today because I think she's upset that she doesn't wake up to her mama every morning. My mom has been taking great care of her every week day for the last couple of weeks and she has really bonded with her Gramme.

She loves to give kisses now and I hear that she has been kissing one of my mom's Santa's that is the same height as her. She also gives high fives and likes to dance when ever she hears music of any kind. She has cut two new bottom teeth for a total of six teeth now. She LOVES food and eats anything and everything you give her. If she sees you eating, she comes running over and makes mmm-mmm noises until you share. She also likes to get into things that are off-limits and runs away with them until we chase her and get the items back. Cell phones and purse items are among her favorite off-limit treasures.

She is the sweetest little girl and adds a lot of comic relief when our days feel overwhelming and heavy. I cannot imagine our life without her, she is a true blessing to us all.

Nicholas continues to improve slowly but surely and will most likely be discharged on Saturday. We are thrilled to be able to bring him home in a few days and will be so happy to get out of the depressing PICU where everyone is sick and all the doctors want to talk about are the negatives about SMA. I have to bite my tongue everyday and try not to yell at them that Nicholas is not a statistic, that he is a fighter and that he and God make the rules. I also have to constantly remind them that while I know they are good at their jobs, they do not know my son and they certainly do not much about SMA. I rely on the SMA protocols from Dr. Schroth and mention them often. Honestly, if it were up to them, they would keep Nicholas for another two weeks until he is completely weaned from his bi-pap except for sleeping. I explained to them that that is something we can do at home where he is away from all the germs and in a comfortable environment where nurses aren't disturbing him every 30 minutes.

I also had to advocate for him today to get The Vest which is a machine that shakes his torso so we can more easily get secretions out. His pulmo didn't want to order it for us. This is the same man who refused to switch him from c-pap to bi-pap until this illness and who wouldn't order home oxygen for us until I could prove he needed it. He told me that he didn't think it was necessary for Nicholas as his cough assist would be just fine and I told him I disagreed completely and that Nicholas needed one to be able to move stuff so that the cough assist can bring it out. He muttered something about being medically responsible and not ordering everything and I shot back with, "Nicholas needs this system to help him stay well and out of here. I think you would want that as much as we do." He finally relented when I wouldn't back down and later I also had another pulmo on charge back me up as well. So we are getting both The Vest and a nebulizer when we come home. I thank God the doctors have the good sense to listen to me and are sending him home soon. I don't think Jeff, Nicholas, or I could handle another week of that place!

You can see we have been getting more smiles out of him in the past few days and he has been talking more and wanting to play. He loves to play with his balloons that Getty sent him and yesterday Child Life brought him a truck and a coloring book so we spent hours playing with both. He colored a nativity picture for his room which we hung on the wall and he loves to look at. He was off his bi-pap today three times for 1-2 hours each time and did great. He is not any any extra oxygen and while he still has a lot of secretions, they are not thick and glue-like anymore.

We cannot wait to bring our little hero home in a couple days!!!!

It Takes A Village

Nicholas has now been in the hospital for thirteen days. He is slowly starting to feel better and breathe easier and may be able to come home by the week's end. He is one tough little boy, fighting through this devastating virus with everything he has and he is truly our hero. Today was his best day since his admission on December 1st. He has been smiling, talking, and laughing all day and the joyful spirit is starting to come back. It feels as if the dark rain clouds are parting and the sun is shining through again and it feels absolutely wonderful.

During these last thirteen days that Nicholas has been hospitalized there have been so many people that have helped us in various ways, so I wanted to publicly thank them for all they have done.

My Mom has been amazing! She has come over to our house pretty much every single morning when Ella wakes up. She is here very early-around 5:30-6:00 a.m. which is hours before our baby rises and never complains. She dotes on our daughter all day and makes her feel like the most important toddler in the world. It is such a help to us as one of us always is with Nicholas at the hospital and Jeff has been trying to put in as many hours at work as he can.

My amazing neighbor & friend, Leslie watches Ella on the days when my mom has to work. Today she brought her son, Harry, over and the three of them baked us some delicious snicker doodle cookies.

My brother, Brett, & his girlfriend, Lisa who are home for Christmas from Florida watched Ella for us this afternoon. They also came to the hospital to visit Nicholas yesterday with my other brother, Eric, his wife, Tina, and my mom.

Several SMA moms, especially Kate Mathany who have been messaging me on facebook with tons of great information about bi-pap settings, intubation/extubation protocols, cough assist settings and the like. Kate & her daughter, Getty, also sent Nicholas a cute polar bear stuffed animal and some balloons which brought a huge smile to his face.

My mother-in-law, Joni who is here from Arizona for the birth of her seventh grandchild. She has been to the hospital to see Nicholas three times in the last week and has been such an amazing emotional support for me.

My husband Jeff has been an absolutely perfect man in these last thirteen days. We promised for better or worse and parenting a terminally ill child is my idea of the worst thing that could ever happen in a marriage. Many marriages wouldn't survive a challenge such as ours, but our marriage has only gotten stronger. We rely on each other emotionally and are there to support one another through the most difficult decisions we have ever had to make. My husband has been staying at the hospital with Nicholas as much as he possibly can and spending quality time with our daughter when he is home. God gave me the most loving, wonderful husband and for that I am eternally grateful. I could not imagine taking this journey with anyone else.

We are so blessed to have so many people who care so deeply for our family of four! It definitely takes a village in tough times like these. Please continue praying that Nicholas will be fully recovered and able to return home very soon.

Parallel Universe

For the past week it feels as if we are living in a parallel universe. A universe where no one sleeps, people are in and out at all hours, and you are afraid at any moment that your world may change forever.

Nicholas has been in the PICU at Doernbechers Children's Hospital since last Thursday. He has a respiratory virus that is causing him to desaturate because of the mucus build-up in his upper airway. He was intubated last Monday night because he was having such a difficult time breathing even with increased bi-pap settings and respiratory treatments. All day Monday he cried and struggled to breathe. His respiratory therapist changed the settings several times on his bi-pap to try and give him some relief, but nothing was working. When we were told that they wanted to intubate, Jeff and I were beside ourselves with worry as the doctors were optimistic but explained the risks associated with intubation in a child with SMA are high. We sat by his bedside and prayed with him. We uttered the most difficult words that have ever passed our lips: that we love him and if God called him home, he could choose to follow the angels into Heaven. Thankfully, our prayers were answered and the intubation was successful. Nicholas had two full days to rest and allow the ventilator to breathe for him and give his weak little body a much needed break.

He was successfully extubated yesterday afternoon and has been resting a lot and has been able to get out a lot of junk in his upper airway with regular treatments which consist of albuterol & saline nebs, the vest, cough assist and deep suctioning. He has a long way to go to get over this illness, but we are feeling very optimistic that with some time and much needed respiratory therapy, he will be able to come home before Christmas. It would be our own small Christmas miracle.

When Ella comes to visit Nicholas in the hospital, he is beside himself with joy. It is truly the only time we see him smile lately. The love he has for his sister makes my heart swell with happiness.

Nicholas is lucky to be at Doernbechers where he is getting the best care. He has some pretty great nurses. Calley is our favorite night nurse and Stephanie is our favorite day nurse. They are so attentive to his needs and try their best to make him feel comfortable and happy.

Last weekend Jeff had an easy time getting him to smile when he blew bubbles around the room. Then he let Nicholas blow bubbles with his bi-pap mask which Nicholas thought was so funny.

Every day I see a bit more light come into his eyes, but it so difficult to live in this parallel universe feeling constant anxiety and fear that things could change at any moment. Please keep our sweet child in your prayers.