Extubation is Happening Today

Nicholas is still in the PICU and here is a photo of him on Thursday...

 compared to a photo of him taken by his daddy last night. Nicholas is now on room air, no longer on pain medications, awake and alert, no longer running a temperature, and asking to watch cartoons. Jeff (who has been with him since yesterday late morning) said that Nicholas is even smiling occasionally for him. I am going there this afternoon when Nicholas's breathing tube will be removed and we are so hopeful that he can maintain good oxygen and a low heart rate, get all the yucky mucus out of his system, and kick this RSV to the curb!

Here are his numbers today...the top number is heart rate (nice and low after being up to nearly 200 Wednesday-Friday) the second number is his respiratory rate (30s are good) and the bottom number is oxygen saturation (100 as high as one can sat, so 99 is pretty darn impressive). 

 This is a photo of the now very familiar drive home through Portland to home. I was fortunate to be home most of the weekend and spend some quality time with our little girl. 

Ella seems to have a bit of a cold (most likely she caught Nicholas's virus from him) and she spent most of yesterday afternoon asleep on my lap, which wasn't a bad way to spend my Saturday. She has also managed to potty train herself in the midst of all this upheaval and craziness. She goes potty for anyone watching her and for us consistently now which is a huge relief. She still misses her brother and asks about him often. We spent the afternoon yesterday tidying up Nicholas's room, washing his bedding, and organizing his things, so that when he comes home he will be happy to return to clean, comforting environment. Ella will spend the afternoon with her little buddy Bella and Bella's family so Jeff and I can be with Nicholas during his extubation. 

 Ella and I went to mass this morning and lit a candle in front of the statue of the Blessed Virgin Mary to ask for her intercession as Nicholas continues to heal. We are also praying for St. Philomena's intercessions as well as she is the patroness of medically fragile children and was taken to Heaven at age thirteen. If you would like to join us in prayer to St. Philomena, click here.

 Some of the best news I received all week is that my forever best friend, Lyndsey, will be flying in next week to give us a hand with Ella and Nicholas and help with all the crazy business that is our life right now. She's bringing her son, Henry, with her and I am so beyond excited to see them both. Time and time again, Lyndsey has shown me such great love and support and never fails to drop everything and give herself completely to me whenever I most need her. I know that I am so blessed to have such an amazing woman as my best friend, and I feel eternally grateful that our friendship has grown and thrived in these past twenty years. 

Please continue to pray for Nicholas that he will continue to improve and be able to come home very soon. 

Somewhere Over the Rainbow...

Oh, how I wish we lived somewhere over the rainbow and far away from the PICU. Nicholas has RSV and was taken to the hospital by ambulance yesterday evening. Today he was struggling to breathe and had to be intubated. My heart breaks to watch him suffer so much. I think this photo speaks a thousand words and my eyes brim with tears every time I look at it. Words cannot express how difficult it is to watch your child struggle to take in each breath and to watch his weak little body be ravaged by a virus that is simply a cold to the rest of us is utterly heart breaking. 

 We have been loved and supported by friends and family this week: my good friend and neighbor, Leslie, came to get Ella when the paramedics arrived yesterday and kept her at her house until Jeff could pick her up; my mom will be watching Ella for us tomorrow and my sister-in-law, Jami, will watch Ella on Friday. Jeff and I have been taking turns sleeping at the hospital because "sleeping" is an understatement. I don't think anyone actually sleeps there. Ever. We have been overwhelmed by the hundreds of text messages, phone messages, emails, blog posts, and Facebook posts our friends and even perfect strangers have offered to us. We truly appreciate everyone of your comments, thoughts, and prayers for our sweet boy and if we haven't responded yet, we promise to in the next couple of days. The biggest surprise of support was a Tweet that my dear friend Holly Jones was tagged in after she posted Nicholas's photo on her Twitter account. Matthew Modine (Full Metal Jacket, Married to the Mob, The Dark Knight Rises) himself is praying for us! Amazing! This isn't to say that we think that he is any more amazing than every one of you. I am honestly buoyed by your heartfelt prayers and love for our son. Your messages and comments get me through the dark, lonely hours of caring for a child with a terminal illness. 

 This is our nighttime view from Nicholas's hospital room. I want nothing more than to lie beside him in his over sized hospital bed and take his pain and suffering away, but, alas, it's against hospital policy. So I lay on a bed next to the window and until my eyelids feel heavy, I pray with fervor for our precious son. 

 Ella misses her brother so much. She visited him for fifteen minutes this afternoon when Jeff and I met at the hospital to switch places. She gave him kisses and brought her new Doc McStuffins stethoscope so she could give him a check-up. Being hospitalized is so hard on Nicholas, but its also hard on all of us, especially little sister who doesn't quite understand why her brother has to stay there. On the way home she kept asking for Nicholas and Daddy and its so comforting to know she loves her family so much, but at the same time it heart wrenching to see her miss them so. 

 These two have such a precious bond and I am so grateful for my amazing husband. He loves the three of us so unconditionally and does whatever he can to make hospital stays, passing kids off, and this crazy sleep schedule as easy as it can be. I so admire the relationships he has created with both of our children and I am beyond blessed to be his wife. He works so hard for us and constantly sacrifices so we can be happy and loved. I absolutely could not make it through these tough, trying times without Jeff's unwavering support and dedication to our family. 

Ella is definitely her father's daughter. They look so much alike in this photo.

Please continue to pray for Nicholas. RSV is no joke and has hospitalized many kiddos with SMA this winter. Nicholas is truly a fighter and I know he wants nothing more than to kick this virus to the curb and return home. Many thanks to all of you who are praying...your prayers are lifting our spirits and making this dire situation that much more manageable. God bless you all. 

The Cold Virus Has Returned

Last Friday afternoon our family spent the last few beautiful hours of light and sunshine at our neighbors house. It was about 55 degrees, which in this climate, felt quite warm and wonderful. Jeff shot some hoops and Ella and Nicholas had fun playing with their friends, Grace & Harrison, while Leslie and I sipped a beer and chatted. It was a lovely afternoon. 

I got up super early Saturday morning to lead an overnight confirmation retreat for work. Jeff also had to work so my mom came over to watch our kids. I was nervous to leave Nicholas as he started developing cold symptoms Friday afternoon, but he did okay with his Gramme. Jeff came home early from work because my mom was a bit concerned about him. Ella woke up very early for her-at about 6:30 a.m.-and spent most of the morning just like this, cuddled up with her Gramme. 

This was the breathtaking view from the retreat center in Skamania County. It's quite majestic. 

 I returned home Sunday late afternoon to a very ill little boy. Today Nicholas is not feeling much better. He sleeps most of the day away and needs to be on his bi-pap and oxygen constantly. We are doing cough/vest/suctioning treatments every two-four hours and more often if needed. I am so disappointed that the cold/flu germs found their way back to him as he suffered through this same thing just a few months ago. Nicholas only went to school one day last week but a couple of his classmates were coughing and sneezing and, unfortunately,  it seems to only take one little nasty germ to infect our susceptible kiddo. Jeff and I are re-evaluating school and contemplating home-schooling next year to give Nicholas an opportunity to learn at home and not have to suffer constant illnesses. 

Please keep our sweet boy in your prayers. 

Happy St. Valentine's Day

 Happy Saint Valentine's Day! We spent the morning in Nicholas's preschool classroom handing out the home made Valentine cards shown above. Nicholas loved helping make them with mommy last night. 

 After class, the kids really wanted to play so we walked to the nearby park and while it was a chilly February morning, both Nicholas and Ella had a great time!

I spent the remainder of the morning planting all these lovely summer flowers. Hopefully I didn't plant too early and they will make it until spring/summer and bloom beautifully!

After work my wonderful husband brought me my favorite: a dozen long-stemmed red roses! He knows me so well. The kids and I gave him his favorite: Reese's Peanut Butter Cups & a sweatshirt from my brother's store. xoxo

Happy Things

Last week I attended a mission at our parish. A mission is like a retreat, except you don't stay anywhere, you just go to church everyday to listen to a priest speak on a specific topic. The priest that came to Holy Redeemer was Father Ben Cameron from the Brothers of Mercy and his talk each day was on the Seven Deadly Sins & the Cardinal Virtues. It was very inspiring and I really enjoyed going each day. After attending the mission, I have started to make some significant changes to my spiritual life and am happy that our parish offered this wonderful opportunity for me to grow in my Catholic faith. 

Our little munchkin has become very proficient in navigating the iPad! She can open all of the kid-friendly apps and play games with ease, and she can open the Netflix app and watch cartoons at her leisure. I observed Ella playing on it Saturday afternoon and I was amazed at how quickly she learned how to use it all on her own!

 Next month Ella will be two and a half, and as she nears her half birthday, her language skills are really taking off! She has started to speak in complete sentences and uses new words every single day. She also understands her brother quite well and translates for others when necessary. It's so amazing to see such a young child grow so much in language and vocabulary in just a few short months. 

 A few evenings ago, our friends came over for dinner and Ella was super excited to spend time with her favorite friend, Bella. The girls are a little over a year apart in age and really seem to enjoy each other's company. 

 These faces crack me up!

 Ella seems to be quite obsessed with socks, but they never seem to stay on her feet for long. She picked out these owl ones at Target last week and was really excited to wear them over the weekend. However, about twenty minutes after they went on her feet, they came off. The laundry is really piling up here what with socks being put on and taken off all day, along with various other articles of toddler clothing. 

Aren't these lilies so pretty?! A good friend of mine brought them over. They make the whole house smell lovely. 

Last Saturday Jeff participated in the Polar Plunge in downtown Portland to benefit Special Olympics. He, along with several of his co-workers, stripped down to swim trunks and jumped into the icy Willamette River. I am so proud of my hubby for donating his time (and money) to such a worthy cause. 

Today was Nicholas's first day back to preschool after being home for three months. He wore this pseudo tie sweater and his huge grin because he was very excited to be back! It was a great morning. He painted a Valentine heart, played cars and house, played ball in the gym, completed some building apps on the iPad, and participated in circle time by singing the ABCs and listening attentively to a story about a polar bear. There were several times that I got choked up with emotion because Nicholas truly thrives at school and to watch him using his arms to paint (among other things) and feeling such a sense of accomplishment is such an amazing thing to witness. He was greeted upon arrival by some of his dearest friends, who were so happy to see him again. That made his day. It was such a great morning!

Last Friday we went to Shriners and picked up Nicholas's new AFO's (foot orthopedics). They fit great and don't hurt his feet like his old ones did. He was especially excited to see the car/plane pattern he picked out on them too! Some of his classmates commented on how cool they are and Nicholas loved their comments. 

I am slowly starting to shake off my winter funk. I think the mission last week really helped because I got out of the house everyday and spent time reflecting upon my spiritual life and how I can transform my mind to reflect that of my soul. I also have quite a few work events that I am in charge of this month, so I have been keeping busy preparing for those instead of sitting inside and counting the days until spring arrives. Approximately thirty-eight. But who's counting?

Winter Blahs

 Oh goodness, I just realized it's been several weeks since my last blog update. I think it's safe to say I have a case of the winter blahs. Different from the winter blues in that I am not seasonally depressed, per se, just lacking sunshine and vitamin D, I think. It doesn't help that we all are cooped up most of the time to keep away from all those germy people in public. Nicholas has not been to preschool since December, but will be returning next week which will bring some normalcy to our routine again. I am looking forward to that! I am starting to incorporate regular exercise and a healthier diet into our lives, which truly is beginning to make a significant difference. Here's a glimpse at what we've been up to these past few weeks...

 Just a photo of me. I usually never take photos of myself but I realized that one day when the kids look through our photos, there will be very few of me when they were young, so I am doing my best to take a few of myself now and then. 

 Ella has been potty-training these last few weeks (which is another reason we've been cooped up) and she's doing pretty well. She has good days and days with accidents, but she is making progress and likes to wear her "big girl panties" all the time. She even tried to teach Elmo to use the potty one afternoon. 

 Jeff's birthday was January 29th and we spent the evening at the Portland Trailblazers basketball game. I purchased the tickets back in September for our wedding anniversary and it was fun to attend the game ON Jeff's birthday. 

 Warm Up

 It was a great game to watch! The Blazers played the Dallas Mavericks and were down by twenty points at the half and had caught up by the fourth quarter. They won the game in the last two seconds by two points! It was so exciting, especially since it was the first live game I have ever attended!

 Blaze-the Trailblazer mascot

Since Nicholas has not been going to school, his teacher has been kind enough to send art projects home for both Nicholas and Ella to complete. Last week we made snowmen with chalk, finger painted, and made mitten wreaths. 

 All this inside time means my domestic goddess really gets an opportunity to shine through. I have been cooking every day and trying lots of new recipes. Yesterday I spent four hours juicing fresh fruits and vegetables for us to drink over the next few weeks. I freeze the juice in breast milk storage bags, so they are convenient to pull out, thaw, and pour into a tall glass. It's going to be my lunch substitute for a few months to see if I can start to shed a few pounds :)

It's nice to have a little lady that loves to be in the kitchen as much as I do. She loves to help stir things on the stove, and is getting more proficient at pouring liquids into the pot. 

 I made a bean and beef soup last week that was so yummy...

 and these tasty ham & egg cups for breakfast last Sunday morning. 

 Jeff snapped a photo of Ella and I wearing our matching aprons and making dinner on Saturday night after church. 

 This was the delicious dinner we ate on Super Bowl Sunday. King crab legs, steak, baked potatoes, and asparagus. It was hands down the best dinner I have eaten in quite awhile! 

We spent Super Bowl Sunday at my mom & dad's house and my brother, Eric, and his wife, Tina, joined us. I am excited to share that they found out they are having a baby girl! She will arrive in early June and I have been searching Pinterest for baby shower ideas for baby Vivian's shower in May. I absolutely cannot wait for our new niece to arrive!

I took Nicholas to his pediatrician this morning, after Jeff & I noticed a red mark on his right foot. Apparently, since SMA children do not walk or stand on their feet, their feet start to turn in, which Nicholas's have been doing slowly over time. Anyway, he has what his pediatrician called a "bone spur" which is part of his foot bone pressing up against his skin. It's not painful for him unless we put on his AFO's (foot orthopedics) and then he winces and cries in pain. Dr. Holland gave us an ace bandage and suggested moleskin or the like to protect it from from rubbing on his AFO's. We will also be going to Shriners on Friday to get him fitted for some new AFO's that will be more comfortable and that will not irritate his bone spur. I swear, this little boy has so much stacked up against him and he just smiles though all the pain. He is such a joy and a reminder that while we all have crosses to bear, carrying ones cross with a smile on your face, makes it so much more bearable. (On a side note: I know most four-year-olds don't use pacifiers, but since Nicholas's mouth is the one muscle he seems to have the most control over, he likes to chew, move, and spit out his binkie during the day sometimes. And we are all for oral physical therapy).