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. 

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?