Sweetest Things

Nicholas is back to baseline!! We couldn't be more thrilled that our little guy is feeling so much better and our routine is back to normal. For the past three days, Nicholas wakes up in the morning and asks that his bi-pap mask be removed right away (and doesn't need extra bi-pap support during the day), then he asks to go out of his room and join us in the living room, and he has little to no secretions in his nose anymore which means nearly no suctioning during the day. It's really so nice for everyone, especially our sweet Nicholas, that he is feeling so much better.

Nicholas has also resumed talking up a storm. He has spoken the words that are closest to my heart several times now:

"I love you, Mom."

Oh, how I longed to hear those words when he was so sick. Every time he says them, my heart skips a beat, tears brim my eyes, and a huge smile is plastered on my face. I feel so grateful to be able to respond, "I love you, too, Nicholas." Time is so precious and has proved to be on our side with our little fighter making a full recovery from his bout of RSV.

These photos show how much Elizabeth loves her little brother. She is probably the most thrilled to have her brother up and feeling good enough to play with her again. And you can tell by the look on Nicholas's face how indescribably happy he is to feel better and be around his little sis again. As I type this, Ella is sitting next to Nicholas on the sofa, and they are watching Wreck It Ralph together while she twirls his hair in her fingers. It's absolutely adorable and it is a moment I have seared into my memory to treasure for always. 

Ella is such a sweet, cuddly girl these days. She loves to climb up on my lap and read books. In fact, I think she could listen to me read all day long. She also loves to sing and dance. It's so funny when she spontaneously breaks into song complete with crazy dance moves. She definitely keeps us entertained around here. 

Ella had a play date on Monday with her favorite friend, Annabella. They spent the day playing with Play Dough...

creating art...

eating snacks & playing outside. Ella talks about Bella almost constantly so she was thrilled that she could spend time with her little buddy. 

Last Saturday, my best friend, Lyndsey, celebrated her birthday. I found this photo of us taken in 1996 at the airport before we departed to Mexico with Lyndsey's mom to celebrate Lyndsey's 16th birthday. I feel so blessed to call this woman my best friend and the wonderful sisterhood we've created in our twenty years of friendship means the world to me.

Ella had another play date last Friday with her friend, Leah. Leah's mommy works with my dad and the girls are only three months apart so when my mom and dad baby-sit Leah, Ella gets to go to my folks' house and play with Leah which makes her super happy!

Last week I had to work a couple of evenings so my mom came to the house to watch the kids. This is what I found when I arrived home. Nicholas and Ella love their Gramme so much and get so excited to have her at our house to baby-sit. My mom was reading Dr. Seuss books and making funny voices and the kids were doubling over with laughter. 

Oh, how I love Target. I found this floral bag that's perfect for spring. It's big enough to pack stuff for the kids, some items from my purse, with room left over for items purchased at the store or to bring home work materials. I can see it being a beach bag for summer days and a great carry-all for the Farmer's market. I just love a great find for a great price. 

Before our weather got all nice and warm (we're looking forward to 70 degree temps. this weekend) I was still making cold-weather food. I tried a new recipe from The Pioneer Woman, Ree Drummond, shown below. It was an absolutely delicious beef stew, with a beer broth. I don't think my husband could eat it fast enough and he commented that it was the best stew I have ever made. If you've never heard of The Pioneer Woman, you can check out her mouth-watering recipes HERE.

We can't wait for the warm, spring weather to arrive this weekend and plan to spend as much time as possible outdoors. The kids will be so happy to hunt for Easter eggs outside on Sunday. We wish all of our readers a very joyous Easter season!!

Spring Has Arrived

 Today is the first day of spring! Yippee! I, for one, am looking forward to longer daylight hours, more sunshine, and hopefully less rain. I spent last weekend planting beautiful flowers to bring some spring color to our house. More about that below...

Last Saturday afternoon, Ella, my mom, and I attended the Missoula Children's Theatre production of Snow White and the Seven Dwarfs. It was Ella's first play and she LOVED it! All of the actors (except for one) were cast on Monday and performed on Saturday. One of the blue birds was a girl from our church, so we went to support her. It was a little over an hour long which was the perfect amount of time for a two-year-old to sit and not get too fidgety. 

 After the play, I met my sister-in-law, Jami, at the local Mexican restaurant for drinks & dinner. We enjoyed margaritas and good conversation. I love her so much and feel so lucky to have her in my life. I always wanted sisters when I was growing up, and by marrying Jeff I was blessed to get, not one, but two awesome sister-in-laws!

I spent most of Sunday afternoon outside planting primroses, ranunculus, pansies, and succulents in all of our patio pots that have been mostly empty for a few months. It's so nice to glance outside and see color now!

This tree is in our front yard and I love the bright pink blooms. It's a sure sign of spring!

Our sweet Nicholas has spent a significant amount of time off bi-pap in the last few days, which is a good sign that he's starting to feel back to normal. The photo below shows his crazy bedhead...

and this one shows what he looks like after Jeff cut his hair. We miss his curls when his hair is short, but it grows back pretty quickly. 

Ella loves spending time around her brother. When he feels well enough to venture out of his room the sits next to him pretty much non-stop and enjoys singing to him or telling him stories. When he wants to be in his room, she brings toys to play with him and will often crawl up on his bed to rub his back, tickle his feet, or cuddle next to him and watch a movie. It's absolutely adorable and Nicholas lights up when ever Ella is around. 

 A couple of nights ago, after the kids had gone to sleep, I snuck in some 'me' time in the form of a relaxing bubble bath complete with candles, a book, and quiet instrumental music. It was heavenly and I honestly cannot remember the last time I got to soak in the tub for more than ten minutes. 

This is the book I am reading right now that my friend, Leslie, let me borrow. It's pretty entertaining with interesting photographs inside to help tell the tale. 

 I captured this moment today between father and son. Nicholas was so happy to have his daddy by his side. Jeff looks kind of tired, but I think that's normal for a guy working such crazy hours these days. Maybe spring will also bring some warmer weather so I can see more of my hubby's face again!

In the last post I spoke to Elizabeth's keen sense of fashion (ha!)...here's another photo to prove it. I have come to the conclusion that she's really an accessories girl. She prefers hats, sunglasses, purses, hair ribbons, and shoes over any article of clothing she owns. She's definitely my child in that sense. 

Happy spring everyone!

Return to Routine

 Life is starting to resume to a normal routine here, which is such a wonderful blessing. The photo above is Ella's "cheeeeeese" face. Little Miss is so happy to have all of her family under one roof again and has spent the last week loving on each of us, especially her big brother. Ella really is such a blessing, she shares her gift of laughter, silliness, sassiness, and love with us all and it's such a delight to raise a child who enjoys life's simple pleasures as much as we do. 

 Our Nicholas feels more and more like his happy non-sick self every day. He has been taking longer breaks from his bi-pap during the day, but he is still working on getting back to baseline. Baseline for Nicholas means that he only wears his bi-pap at night for sleeping. We realize that because SMA is a degenerative neuromuscluar condition, being on bi-pap more frequently may be Nicholas's new normal, and that's perfectly okay with us. What ever we can do to help our child feel comfortable and relaxed is what we plan to keep doing for him. Nicholas also has more secretions than normal and we assume those will lessen as he continues to improve, but, again, we realize that this could be Nicholas's new normal. When Nicholas got bronchitis before his second birthday, that illness took away much of physical abilities: the ability to feed himself, the ability to sit unassisted for long periods of time, and most drastically the ability to swallow food and eat by mouth. Typically, most SMA children loose some strength when dealing with an acute illness so we know that Nicholas may never regain some of those things he lost while hospitalized with RSV. We do hold on to hope, though, that with some time, Nicholas will be back to baseline and not too much will have changed just yet. 

These beautiful brown eyes have captured our hearts forever.

Ella has enjoyed dressing herself every day this past week. In these photos she chose her brother's winter cupcake hat, a hand-me-down daisy shirt from her friend, Aubree, and her jean jeggings. 

Today when I got home from work she was wearing her rainbow striped pajama pants, a long sleeved white tee shirt, and a blue and white polka dot swim cap. I just looked at Jeff, and he said, "What? That's what she wanted to wear after her bath. At least she matches." No part of our daughter's outfit matched, so she gets her sense of style from her father, obviously.

I think she looks like a true artist, don't you? 

Since we sprung forward last week I have been planting like crazy. All this extra light in the evenings combined with warmer weather makes me eager to be outside. So Ella and I usually spend time in the afternoon in our backyard tending the flowerbeds and planting new flowers to bloom this spring and summer.

When Nicholas was at Doernbechers, the wonderful child life coordinator, Jan, brought him this wonderful Storytime Sticker Book that both Nicholas and Ella really enjoyed completing together with a little help from mommy.

The kids liked it so much that I ordered several more for them which will be delivered by the Easter Bunny on Easter Sunday. Shhh, don't tell...I cannot wait to see their excited faces!

That about sums up our week back at home. Even things like dishes and laundry don't bother me these days as being home just feels like such a blessing. 

First Tooth Fairy Visit

When Nicholas was intubated the first time, the anesthesiologist noticed that his upper left lateral incisor was loose so she pulled it out to avoid him swallowing it. So last Thursday evening Nicholas was super excited to leave his first tooth out for the tooth fairy. He fell asleep in sweet anticipation that she would visit in the night.

 I was lucky enough to capture the cute little fairy on camera while Nicholas was asleep. He was beyond excited to see her picture in the morning! He said, "Wow!" when he saw that she came into his room while he was asleep. 

The tooth fairy was very generous-she left Nicholas's tooth for him, as he had requested, and she also gave him $2.50. He was very excited to see that his tooth was still there and that he got some money too. Now he would like his own piggy bank to keep his money in. 

Today Nicholas is feeling good enough to be off his bi-pap. He has been off it for two hours now and is doing great! We are so happy that he is starting to feel like his regular self again!!

O Happy Day

It's been awhile since my last post so I have quite a bit to catch-up on. First I want to start off by letting you all know WE ARE HOME FROM THE PICU!!!!! Today is a wonderful day simply because we all woke up under the same roof. Plus the sun is shining and its gorgeous outside (which helps one feel like spring is quickly approaching which equals less cold/flu germs...yippee!)

But let me start back where my last post ended. Sunday, February 24th Nicholas was not successfully extubated. His breathing tube was out for about 20 minutes when his breathing became rapid and he was struggling to take each breath. He was panicked, crying, and clearly uncomfortable. So he was re-intubated and we (Jeff & I, doctors, and nurses) decided that Nicholas's breathing tube would not be removed again until we felt he was over his RSV. That meant less secretions needing to be suctioned, no fevers (as he was spiking them intermittently because of a bacterial infection in his trachea), and making sure he had plenty of rest to fight off the respiratory virus. 

I will be absolutely honest, every single time Nicholas is in the PICU with an acute illness, we are terrified. We worry that he will not be able to come off breathing support and will loose muscle strength and will not get back to baseline. The day he had to be re-intubated I was sobbing uncontrollably because I was sick with worry and fear that our son's last days were upon us. I felt somewhat comforted by his pediatrician (who used to work at Doernbechers and happened to pick up a shift that day) who hugged me, gave me lots  of encouragement, and talked with me about all of our options after Jeff had to leave to be with our Ella. After that Sunday, the days passed with little change and we felt like we were playing a waiting game, one in which we hoped time would be on our side. 

I passed the time reading (mostly) thanks to my brother, Eric, and his wife, Tina, who came by the hospital and brought me several People magazines. My good friend, Leslie, also gave me a great book to read, as did my lovely friend, Jolene. I also spent a great deal of time praying. Asking God to grant us more time, asking Him to heal our son, and asking for St. Philomena's intercession as the Patroness of sick children.

Jolene's son, Evan, also wanted Nicholas to have this special little Blessings coin which fit perfectly in his hands. He held it tight for several days in a row and it gave him comfort as he slowly moved his fingers over it. 

On Wednesday, February 27th our spirits were buoyed by my bestest-best friend, Lyndsey, who swooped in like Mary Poppins with her son, Henry. She spent the next five days caring for our sweet Elizabeth: playing, coloring, cooking meals, reading books, taking the kids on walks and to the park...she was basically a second mother. Ella even coined her "mommy" while she was here which made me smile knowing how much she trusts and loves her Auntie and shows how comfortable Ella is with her.

Oh, how Ella fell in love with Henry. She couldn't get enough of him and became what Lyndsey dubbed "a human blanket" because she constantly wanted to hug Henry. She enjoyed having a little buddy to chase all over the house and always was a bit sad when Henry had to lay down for naps. 

 Henry and Lyndsey had to leave last Monday and Ella was so sad to see her friends go, as was I. Ella walked all around he house calling for Henry when we got home and whenever she sees his photo, she shouts, "My Henry!" To say he made an impression on her is a bit of an understatement.

Nicholas's grandma, Stephanie, and great-grandparents, Tom & Betty, sent Nicholas this beautiful, HUGE circus balloon arrangement to his hospital room. They helped lift Nicholas's spirits and every single nurse or doctor that came in his room commented on how awesome they were. 

The Wednesday that Lyndsey and Henry arrived, all night Ella could barely sleep as she was rubbing her ears, crying, and wanting to sit upright to sleep. I arrived home early Thursday morning to an obviously sick and uncomfortable girl. I called her pediatrician first thing that morning and took her in to find that she had a double ear infection. So now both she and Nicholas are on antibiotics for several more days. It felt awful to leave our daughter when she was sick to be with our son who was in the PICU and obviously much more ill. I was so grateful that she was with Lyndsey, who is absolutely amazing and gave her motherly comfort when I was not there.

Last Sunday, the day before Lynds and Hen had to fly home, we visited Nicholas. Nicholas was still intubated but starting to show signs of tremendous improvement: he was finally on the correct antibiotic to fight his bacterial infection with no more fevers, he had less thick, gunky secretions, and was no longer requiring any serious pain medication.

In high insight, we think he probably could have been extubated on Sunday, as he seemed to want to interact with the kids and was frustrated to be up high on his bed and so far away from them. But the visit lifted his spirits and he was so happy to spend some time with everyone.

 Jeff stayed with Nicholas most of the days Lyndsey and Henry were visiting so I could spend time with them. Sunday evening after we left Nicholas's room we snapped a couple of photos of the kids near the entrance to Doernbechers.

We then decided to have an early dinner with our kiddos. A glass of wine was spilled (by my child, of course) but other than that, it was a wonderful meal. And just so you know, Auntie, we will be replacing your cute Gap sweatshirt with the red wine stain.

 I arrived back at the hospital on Monday afternoon to see this happy, smiling boy!! Words cannot describe how thrilled I was to see the light in Nicholas's eyes and this huge grin on his face. I knew that he was ready to be extubated and our feelings were confirmed when Jeff asked Nicholas if he wanted his tube out and Nicholas nodded his head with an emphatic "yes." The doctors extubated Nicholas at 5:30 p.m. on Monday and he has been doing great ever since. He still has more secretions than normal, but they are not thick and gunky and are very easy to get out. He is also wearing his bi-pap mask around the clock, we remove it for brief periods of time (when he gets a respiratory treatment, for example) but not for too long yet. We will slowly begin to wean Nicholas off his bi-pap for short periods of time in the next several days, as he feels up to it. We have noticed that when Nicholas gets ill with an acute virus, it usually takes about three weeks for him to get back to baseline.

Since he did so well with the second extubation, the doctors let us know on Tuesday that he could be discharged Wednesday if we felt comfortable with that. We definitely did feel comfortable, so we were beyond thrilled that Nicholas was discharged yesterday afternoon and we could all be together as a family again! Nicholas was so, so happy to be home and looked all around his room soaking up every thing in his space. Nicholas hasn't talked much since his tube came out on Monday, but we know his throat is still a bit sore from having the tube in for a week and a half. He has asked to watch movies and has asked to roll, but I am anxiously waiting to hear him say, "I love you, Mom," which melts my heart into mush every time he utters those four magical words.

Nicholas wanted to spend the evening watching some movies so we got him all set-up in his room while Ella spent time coloring. The normalcy of the evening was so indescribably wonderful. I was so grateful to have our family of four back home together, resuming the wonderful routine of our every day life.

Ella was beyond ecstatic to have her big brother home again. She was jumping and shouting "Brother's Home!" when he rolled in on his stroller and kept saying, "Hi Brother" right up close to his face which elicited huge grins from Nicholas. Later in the evening she crawled up on Nicholas's bed and watched a cartoon with him. It's hard to see Nicholas's smile in this slightly blurry photo, but he was smiling from ear to ear. Ahh, it's good to be home. There's nothing like home sweet home.

Now I have so many people who need to be thanked for helping these last two weeks. It really does take a village to raise children, and we are so very grateful for every single person who helped us this week. In no particular order, here is our long list of thank yous:

JAMI: Thank you for taking a day off work to watch Ella. She had such a great day with you!

ADRIANE: Thank you for visiting Nicholas and I in the hospital. Your smiling face was just what I needed. Also thank you for the stuffed animal you gave Nicholas and the toiletries you gave me. We are also so grateful for the mass that will be said in Nicholas's honor on June 24th of this year. 

LESLIE: Thank you for coming over to take Ella to your house when the ambulance arrived at ours to transport Nicholas to Doernbechers. Thank you for bringing Jeff and I all those mini-meals packaged just perfectly to grab from the fridge and bring to the hospital. Thank you for loaning me a fabulous book to read to pass the time while sitting in Nicholas's hospital room. And thank you for your visit last Saturday. Your presence made that not-so-great day for Nicholas much better for me. 

ERIN: Thank you for watching Ella for us and letting her spend some time with her Bella. She loves your daughter dearly. Thank you for the huge gecko balloon for Nicholas and the cards your kids made. They all helped brighten his day. 

LAURA: Thank you for bringing dinner to us. It was delicious, easy to prepare, and comforted us on our first night home after being at the hospital for two weeks. Your generosity is so appreciated. 

MARIE, DEREK, CHRISTIE & Holy Redeemer TEENS: Thank you for your visit last Saturday. Nicholas loves his stuffed dog which he named Goldie, it has quickly become his new favorite cuddle buddy. Also thank you for the chocolates. I ate quite a few of them and shared them with the nurses and respiratory therapists too. 

STEPHANIE, TOM, and BETTY: Thank you for the huge arrangement of circus balloons you sent to Nicholas's hospital room. They helped to lift his spirits. 

SANDY: Thank you for teaching my RCIC class every Tuesday evening, and attending the Rite of Election and First Scrutiny for me so I could stay with Nicholas. I appreciate you helping me with these important work events.

ANDREA: Thank you for the Kona coffee and travel coffee mug. They came in handy on those drives to and from the hospital.

KELLY: Thank you for the Dream Lite you gave Nicholas. He loves how it lights up his room at night. Also thank you for all the hand-me-down clothes that Kate passed to Ella. They are adorable!

LISA and JAMIE: Thank you for taking care of all my miscellaneous work emails, phone calls, and other important day-to-day details that I was unable to do myself. 

ABBEY: Thank you for the beautiful calla lilies which I cannot wait to plant in our yard. Thank you for loving our Ella, she loved her time with you. Thank you for spending Saturday night with Lyndsey and I, buying us dinner and laughing with us until bedtime. 

ERIC and TINA: Thank you for visiting the hospital and bringing treats for Nicholas and myself. The magazines helped pass the time, and Nicholas loves his Cars book and toys. 

JOLENE: Thank you for bringing me a wonderful book to read to pass the time in the PICU. Thank you for bringing me yummy chicken tortilla soup for lunch, there's nothing like a home-cooked meal. Thank you to your son, Evan, for giving Nicholas the "blessings" coin. You are raising a very compassionate child. 

SHAWNA: Thank you for visiting Nicholas and I at the hospital. Thank you for the supplement information, which I know helped Nicholas recover form RSV faster. Thank you for the Play Dough toy for Nicholas and the warmer for me-it helped on those nights when we turned down the heat in Nicholas's room to help lower his fever temperature. It's so nice to have another SMA mother to talk to who completely relates to raising a terminal child and all that goes along with it and offers a shoulder to lean on in a way no one else can.

CATIE: Thank you for the huge box full of goodies for Nicholas and clothes for Ella from Aubree. Nicholas loves his blanket and light so much and both gave him comfort in his hospital room.

PICU DOCTORS, RESPIRATORY THERAPISTS and NURSES: You are all in the right profession. It truly takes an empathetic, compassionate individual to work so closely with families who have very, very sick children. Jeff and I were constantly comforted by your support and love for our son. I was grateful for the interaction with other adults and it was nice to have "normal" conversations in a very unfamiliar environment. And a special thank you to some of our favorite people who let us know you were doing everything in your power to help and comfort our son: Kevin, Rachel, Jessica, and Mariah, who are amazing RTs and who helped give Nicholas such relief from all the yucky secretions plaguing him. And Calley, Susan, Matt, Kim, Jon, Ryanna, (and a few others I know I am forgetting) who were not only nurses, but whose hearts were touched by Nicholas and who were not afraid do anything possible to help him.

MOM (Gramme): Thank you for spending day after day caring for our Ella. She loves you dearly and is so comforted by your constant presence. You helped give her some normalcy when her routine was changed dramatically. Thank you for getting her out of the house, which she loves. Thank you for feeding her constantly to make sure she was getting proper nutrition. Thank you for cleaning our house top to bottom-twice. Thank you for cooking for us and buying groceries. Thank you for washing and folding all of our laundry. Thank you to you and Dad for visiting Nicholas in the hospital. Thank you for loving us and always, always helping us make lemonade when life gives us lemons. xoxo

LYNDSEY (and Henry): Thank you for dropping everything, rescheduling photo shoots, and flying in from California to be with us when you were most needed. Words cannot express how deep my gratitude is for you. Thank you for taking such great care of our Ella. She absolutely adores you and Henry and your presence made the days of upheaval much, much easier for her. Thank you for being silly with me and making me laugh when my soul most needed it. Thank you for crying with me when we were making difficult life decisions for our son. Thank you for always being a constant source of comfort and strength for me in these past twenty (?!) years of friendship, knowing what I need before I do, and loving me through all these tough times. I don't know what I would do without you. 

To my husband, JEFF: Thank you for being my rock and my strength. This life journey that we are on is not always easy, but you make it easier with your constant support and unwavering love for me and our children. Thank you for staying at the hospital most of the nights while Lyndsey was here so I could spend as much time as possible with my best friend. They say that marriages are only as strong as the most trying times, and I know our marriage is stronger than ever. I love you today more than ever before. 

To all those who offered words of love, support, and encouragement to us in these last few weeks, thank you! Reading your facebook comments & messages, blog comments, text messages, and listening to your voice mails really helped life our spirits and made us feel so supported and loved during this difficult period of time in our lives. God bless you all!

I would like to finish off this post by saying how inspired I am by our sweet son. Nicholas has a spirit of pure love and unyielding strength and courage. I am amazed by his ability to withstand such pain and suffering and come out of such a trying illness with his joyful self completely in tact. He continuously astounds me with his perseverance to remain here with us and his ability to fight (hard) through each and every virus that ravages his already fragile body. My life has been forever changed by Nicholas, and for the blessing of being this sweet child's mother, I am eternally grateful.