10 months in.

We are now 10 months into the pandemic. Today has been one of the worst days yet for infections, hospitalizations, and deaths. We are tired. We are weary. We are going stir crazy from our isolation but we will continue to do whatever we have to to stay safe and keep others safe. 

The kids are still enrolled in the Salt Lake school district in order to continue with remote learning and Jake's work has been remote since March. Thankfully we moved into our new home the first week of September, so we have more room both inside and out. We still don't know any of our neighbors beyond a quick wave hello from afar and brief introduction. Maybe by spring. 

We are getting ready to celebrate Christmas soon, but as it was with Thanksgiving, no parties or get together a will be happening. We have gotten food at zoom meetings and masked, socially distanced visits but hope to not have to continue this too much longer. 

Claire is 7!!!

It's surreal at times how fast the kids are growing up. We spent over an hour this morning going through photos of Claire's first year (and cute big brother Owen). While in a quarantine type setting we spend essentially 24/7 together, and for the most part it's really nice. The days can feel long sometimes though and it takes a nostalgic day like today to realize how fast the years go by. 

Since we still can't invite people over (or be within 6 feet of anyone outside of our family), we planned some FaceTime chats with a couple of Claire's friends from school, a Zoom (video conferencing) party with family, an outing to visit baby animals at the Cross E ranch (via drive through, social distancing style), and a neighbor sparkler party. Jake made a chocolate cake and I decorated it as a dog paw print. We gave Claire a big stuffed animal dog and books. One friend from school, Anna, dropped off a present at the door for Claire then was able to chat for a minute through a closed door. 

Today was nice. Other than the need to social distance, it felt like a pretty normal birthday. I've noticed that if I avoid the news and truly focus on my little family, it all feels pretty normal. My priorities become priority. The doom and gloom don't feel quite so palpable. So for now, I'll stick to focusing on us. At least as much as I can.

sunny days ahead

It's been a week. But it's only Tuesday. 

Phew. 

At least it's spring. The days are getting longer and sunnier, so there's that. 

Riding the pandemic wave from home

Stay safe, stay at home. This has been our directive for the past few weeks. Utah has been spared in comparison to much of the country so far, but in a pandemic nothing is guaranteed. As of today the US has over 347,000 infected and has hit a grim milestone of 10,000 deaths from the virus. 

In our house things carry on with a somewhat normal routine. The main differences we're seeing at this point is that we just don't go anywhere. We don't visit anyone. And the two grocery store trips I've made over the past month have been nerve-wracking. As of two days ago the CDC recommended that anyone going in public should wear a mask, that no one should be leaving their home except for essential services, and that we will have possibly the worst week to come. Our state feels surreal oftentimes. It feels that many if the residents see this pandemic as some far off, remote threat that can't possibly touch our state. Therefore many are out and about as usual, acting inconvenienced that they can't go to a movie or eat in at a restaurant. There is a lot of ignorance and selfishness by people who see this as an 'old person disease' and feel that since they aren't at risk that they shouldn't have to change their life. Grrrrrr!!!!! I've had anger and frustration in regards to this that's gotten to the point that I can't read a lot of news or comments anymore. The confusion, misleading 'facts' and inability to lead from our White House had intensified the tolls on our country and the individuals in our nation at this point. 

I hope and pray that there can be a clear leader, that people will all truly take the 'stay safe, stay home' directive to heart, and that we don't have to continue to see lives lost in this pandemic. 

As for now, we'll keep on homeschool, remote working, and avoiding the grocery store like our lives depend on it. 

Owen is 9!

We celebrated Owen's birthday yesterday. His 9th birthday. I don't know how the time has gone by so fast, and honestly neither does he. Initially we had made plans to spend spring break,vwhich is the week before his birthday, in Southern Utah. The first reservations were for Kanab, the Grand canyon, and Sedona. Once word of a possible pandemic started spreading we changed the plans to Kanab and Escalante, two lesser traveled towns with hundreds of miles of land and trails. But as the epidemic from abroad turned into a pandemic hitting Utah locally, we had to cancel our spring break plans altogether. We also had to cancel any in-person birthday party for Owen. We got creative and tried to make it as memorable as possible for him though 

I ordered a package of 100 balloons; light green, dark green, and white to fill the climbing room and surprise him. I also made a surprise video chat with 'Scales and tails' to have a reptile presentation just for him. We made a Minecraft birthday cake and got ice cream (which we ate for breakfast since our freezer is dying slowly and wouldn't keep it frozen). We had video chats with Jeannie and family, and Deborah's family. We talked to Grandma Crowther on the phone and ordered Chinese take out (all restaurants are closed for dining in but many still offer take out or delivery). Then at 7 pm we went outside and lit sparklers along with 3 neighbors families and sang happy birthday for Owen. It was an unconventional but hopefully memorable birthday for him. 

At this rate it is looking definite that we'll have to do a virtual birthday party for Claire in a month as well. But for now we continue to take things a day at a time. 

Day 14 of quarantine

It has been 2 weeks now since we've been out of the house other than for walks around the neighborhood or playing in the backyard. It's been just over a week since the 5.7 earthquake in SLC and we've had many, many noticable (and anxiety producing) aftershocks. Since this week is 'spring break', I've had the kids continue with some of their school work to keep them (and me) in a schedule, but we've had a lot of free time. 

The numbers of Covid-19 in the US are going up by the hour. We now have more cases at 82,000 here than any other country in the world. Utah just crossed the count of 400 cases and one death. The government hasn't made any changes in the past couple of weeks other than stating that schools will remain closed until at least May 1st. 

At home things have actually felt fairly normal other than no playdates or going out. It's starting to feel a bit like the movie 'Groundhog day' in that most days look pretty similar. Considering what we've all gone through lately and what others are experiencing now, I'll take our groundhog days! Owen's 9th birthday is on Saturday and I feel bad that he can't have anyone over for a party but I think we'll have a couple of surprises for him that will help make it special. 

I'll check back in soon, we'll see where life is taking us.

Strange Days; Life in a pandemic and earthquake

We are now officially through our first week in self isolation. Last Friday morning I did a big grocery shopping trip to get enough food to hopefully get us through two weeks. Since then we have had  no direct contact with anyone. We have seen neighbors from across the street and through the fence, but we have made sure to keep our minimum 6 foot distance. Life as we knew it has changed dramatically in the past few weeks and doesn't show any signs of returning to normalcy any time soon.

The U.S. started getting news of a new virus, Corona virus (Covid-19) in early January. It was localized to China but before long new cases started cropping up throughout the world. By the end of February it had made it to the United States and quickly started making people in Seattle and California sick and dying. At this time our family had been hit hard by a respiratory virus. Claire began with runny/stuffy nose, cough, and fever and ended up also getting a severe ear infection that required antibiotics. A few days after Claire began showing symptoms Owen started with a fever as well. He also had a very runny nose and cough but even as the cough began to wane his fever would not go away. We took him to the pediatrician multiple times over a 3 week period, tested him for numerous infections with blood tests, a chest x-ray, viral panel, and even abdominal ultrasound, to no avail. As of now, almost one full month after the start of his fever we still don't know what is causing it. Thankfully it has gone down and he has a pretty normal amount of energy and appetite, but it still is not completely gone. But now that we are in the age of a full blown pandemic, getting any additional testing or even a dr visit feels like more of a risk than a benefit. So we wait, wait and hope that whatever is causing his temperature to stay elevated will subside on it's own.

As of this Monday, all schools in the state of Utah are closed. We have been thrown into makeshift homeschooling in an attempt to reduce the spread of Covid-19. As of today we have 112 cases but since the availability of testing has been almost impossible, the actual numbers are likely much higher. The number of cases in the US are now at over 18,000 and the number of worldwide deaths are 11,000. In Italy alone, in the past 24  hours there were 627 Covid-19 dealths. It is unimaginable what the world is facing right now. We are all being asked to do social distancing. We are being told to not be in groups of more than 10 people and to keep a 6 foot distance when in any group. Schools, government offices, stores, theatres, libraries, rec centers, museums, campgrounds, and zoos are all closed. Restaurants are closed to public seating and only allow take out or delivery. Grocery stores (especially warehouse stores like Costco) are almost completely emptied out. It is virtually impossible to purchase toilet paper, paper towels, hand sanitizer, or any pantry staple (flour, peanut butter, eggs). 

Tuesday was St. Patty's day. We celebrated by putting cut out paper shamrocks in the window for anyone walking by to see. The kids and I went for a walk around the neighborhood at lucnchtime to look for shamrocks on the windows of our neighbors. That night Owen decided that he was going to be a leprechaun  and make a mess in our family room. After Claire went to bed, Jake and I want into our room and Owen turned into a leprechaun, turning over chairs, throwing our shoes around the room, hiding snacks, and making a general mess. The next morning, Wednesday the 18th as I was sitting in bed, reading the news, the house started shaking. It started soft as it sometimes does when a big truck is driving down our street, but very soon the shaking got much more intense and I knew that it was definitely not a truck. At this point I heard Claire screaming from upstairs and I flew out of the bed, running up the stairs to get the kids. All the while the house is shaking like it were a boat out in a violently stormy sea. As I made it upstairs I grabbed both kids and yelled to get downstairs and outside. Jake met me at the stairs and helped Owen down and I carried Claire down and out into the backyard. Looking back, I honestly don't know how we all made it down the stairs without falling. Thankfully we all made it outside safely and put chairs out in the middle of the grass, away from anything that might fall. Since it had rained the night before and it was very cold, after the shaking had stopped I ran inside to get blankets, jackets, and my bra. For some reason I felt like it was super important to get my bra. Whatever. I called our neighbor asking if they had felt it too and if they were ok. I then called my parents to check on them and they said that according to the news it had been a 5.7 earthquake. There was an aftershock a little less than an hour later of 4.6 We stayed outside for quite awhile, worried to go back in the house in case of another large aftershock. But after a while we decided to would be ok to go back in. There were numerous small aftershocks but not another large one until just after 1 pm. Another 4.6. Feeling quite panicked we all rushed outside again and waited it out for a while. Thankfully there were no fatalities or even injuries and our house faired fine. As far as we know at this point there was no damage to our house or anyone in our family.

As for  now, I'm off to bed, hoping and praying that we've experienced the last of the earthquakes and that we can be happy and healthy as a family and as a world. Goodnight.

Hope

I have to admit that I've never been a fan of Star Wars. I've seen a few but don't remember much other than the classic fight scenes and other random Sci-Fi material in between. When I heard of the death of Carrie Fisher the other day I was saddened that we lost yet another icon this year, but it wasn't until I saw the 'Scary Mommy' article that I realized what a hero we lost. In "Carrie Fisher’s Mental Health Advocacy Shines In The Wake Of Her Death", (http://www.scarymommy.com/carrie-fishers-mental-health-advocacy-shines-in-the-wake-of-her-death/ ) I found a glimmer of hope that I haven't seen for awhile.

I have depression. I have severe anxiety. And this year has sucked.

I am currently trying to find a light in my 'episode' of anxiety and depression that has been worsening for over a year. I have kept my mental health hidden for decades due to the stigma attached to mental illness. I have shamed myself and made myself feel like less of a person because of my illness and even though I can control it most of the time, sometimes it does control me... and it's scary as hell.

I have been on anti-depressants of some sort since my teenage years. I have had good years and bad ones, and most defiantly have a love/hate relationship with medications but as I read in the article "Without medication I would not be able to function in this world. Medication has made me a good mother, a good friend, a good daughter”. As I am currently transitioning from Cymbalta to Trintillex I have mostly bad days. Transitioning off of an depressant is hard. It can be a time when your mind and your body seems to be trying to convince yourself that it won't get better, that life is always going to be impossible... but it can and will get better. I know it will,  I've been here before and I'm still alive.

In writing this I am telling myself as well as anyone else reading this who is dealing with mental illness that it (life) will be ok. Even though it seems really bad right now, things will get better. Medications, even though trial and error, will eventually work. Mindfullness, meditation, and yoga will help. The absolute undying love that I have for my family can sometimes be hard to see and feel when depression and anxiety have a hold on me, but the love will always be there.

There is hope. I will survive this. And to anyone reading who needs this- you will survive too.

“At times, being bipolar can be an all-consuming challenge, requiring a lot of stamina and even more courage, so if you’re living with this illness and functioning at all, it’s something to be proud of, not ashamed of. They should issue medals along with the steady stream of medication.” Carrie Fisher Wishful Drinking, 2008

I choose Love.

I have to admit that it almost feels like I'm getting over a broken heart. I know that most people are 'over it' and have moved on since the election, but I haven't. I feel like hate won on November 8th. As an empath I feel it all. I feel the hate, tension, fear and terror that has been running through the arteries of our nation and I have been in a really bad state, both mentally and physically for the past few weeks. Although I knew I was depressed after the results came out that Wednesday morning I am just now realizing that I have truly been experiencing what I can only assume is a broken heart. My heart is broken for humanity and the people of our nation. My thoughts go way beyond that of a political party but to the roots of why people voted the way they did. To allow a being who embodies hate beyond anything we've seen for generations...well, that is beyond me. I have been struggling with the thoughts of the future not only over the next few years, but more for that of my children. What kind of reality will be theirs when they are my age? So many thoughts and fears have run rampant in my mind that I almost became paralyzed by them. This morning I came to the realization that the only thing I can do, the only thing I have control over is that I have to choose lover over hate and fear. I cannot continue to struggle with my daily activities because of worry about the next few years and what will become of the country that I was born in. I take solace in the fact that there are so many people outraged by the election results and the fact that over 2 million more people didn't choose hate.

I have to actively work everyday on making sure that my thoughts and actions work toward spreading love and acceptance rather than let myself feel helpless and depressed. I want my kids to know that the answer is love. Bullying and demeaning anyone is not ok. Making others feel bad to make yourself feel better is not acceptable. Hate will not win. Love will always trump hate.

The healing power of Place.

It was 3 years ago this February that Jake, Owen, and I made a drive down to Moab. My mind needed clarity and my soul needed comfort. We had been been faced with the grim prognosis of the pregnancy since Christmas and I was still trying to wrap my head around the possibility of losing my baby. Every. Single. Day. We had made a trip to the California coast in January in an effort to escape this reality and find some comfort and although it was nice, my soul was still in despair. I could not face having no control of the possible loss of this unborn being. I needed to find some peace. The red rock and solitude that can be found in Moab has always been amazing to me but this trip it felt as if each step I took through the cold red sand helped me to find the strength I needed to face the next day, and the next, never knowing if it would be the last living day for our baby girl.

Moab, Feb 2013

Moab, Feb 2013

We had been told at the 20 week ultrasound that the prognosis of a baby this far behind in growth and with a condition called 'echogenic bowel' were very grim. We got a second opinion. An amniocentesis. A FISH test. Serial ultrasounds. A third opinion. Genetic counseling. A family planning consult (which ended up being a pregnancy termination consultation). More consults. More ultrasounds. All with the underlying assumption that this pregnancy would not likely be successful. That at any point the pregnancy may cease and my delivery would be that of a stillborn. I bought a special blanket that I would use for her delivery if that were the case. We prepared ourselves mentally for the worst.

The days, weeks, and months remaining in my pregnancy after our time in Moab were still hard, but I felt at peace. I felt like I was doing everything I knew to give our girl a fighting chance and that I would be okay with whatever outcome prevailed.

In April of 2013 the best possible outcome happened. Claire was born and not only survived, but also fought and thrived from day 1. Fast forward three years and despite the trials we have all been through, she is still fighting and still thriving...but I've always had a nagging feeling of fear. Fear of the unknowns, worry that she has done so good thus far but something bad will happen and fate will rip her away from us, or that something will happen with Owen and that our family will face another life changing trial. It sounds paranoid, and maybe it is but when you've been through the emotional rollercoaster that we have over the past few years most days you feel like you're waiting for the good to end.

Owen at Fishers Towers,
Moab Feb 2013

But here we all are. Three years later and we are all here, we are all good and I love seeing that we are all thriving. I have to remember to take each day as a gift and know that tomorrow isn't guaranteed. Regardless of what happens to us in the future we have today. The cool red sand of Moab in February, the clear blue skies, and each other.

Owen and Claire at Fishers Towers,
Moab Feb 2016

Just the 4 of us, Moab 2016

Claire Bear in Moab, Feb 2016

Love;

If I were to imagine my life story written on a piece of paper... Well, first of all it would be a yellowed, college rule sheet that has the tattered edges of being ripped out of the notebook in haste. It would be worn, pretty smooth but with evidence of having been crumpled up and flattened out several times. I say this like its unique, but I'm pretty sure that anyone who has lived much of a life would have a pretty similar paper. And although the individual words of each persons life story is so varied, one thing remains constant through all the stories. The use of the semi colon; which I personally suck at using correctly. As is put so eloquently in the semi colon projects website "a semi colon is used when an author could've chosen to end the sentence, but chose not to. The author is you and the sentence is your life".

I love this project for so many reasons; mainly due to the fact that I have survived for as long as I can remember with pretty severe anxiety and depression and continue to struggle each day with it. Another big reason I support the movement is as a remembrance of the life of my nephew Alex; who sadly found ending his sentence the only way out. I wear this symbol as a reminder to myself and anyone else who may be dealing with anxiety/depression, addiction, self injury, or suicidal thoughts that each day is a conscious effort to keep your story going; that there is more to your story than this; and that you are not alone.

I am amazed and inspired by the number of semicolon tattoos I've seen popping up online and hope to see more because the area of mental health has been so full of shame and embarrassment that many  don't get the help they need. I myself have felt so ashamed of my sometimes debilitating anxiety that I have lost out on so many opportunities in my life. My fear and embarrassment over people's reactions have kept me from relationships, education, and adventures that I greatly regret. Knowing that my children may be predisposed to a mental health disorder because of my own crushes me. This project enables me to be more proactive with them as they grow up, so they know that anxiety and depression (nor any disability) are not something to be ashamed of.  This tattoo is a talking point and possibly a beacon of hope to someone in need who is looking for help, someone to talk to, or just to know that they are not alone.

This little symbol means so much. So much more than could ever be put into words. It has allowed me to finally come clean with anyone who sees me; anyone who reads this that yes, I do have anxiety and depression and yes, I consciously choose to keep my story going because of love; love.

I love you from the heart.

A little over a month ago Owen, out of the blue, came up to me and said, 'momma, I love you from the heart'. And I melted. I don't know where he heard this, or if it came from him but it is the new saying around our house and I love it.

Things are pretty status quo in our house these days. We go about our weeks with a pretty predictable schedule, throwing in the occasional therapy or dr appointment here and there but otherwise keeping to a pretty standard day to day routine. Claire still gets tube feeds at 5, 9, 1, 5, and 9 with attempts at oral feeding scattered throughout the day. We are working on transitioning her to a more Blendarized diet in place of the commercially prepared 'pediatric compleat' formula that we are currently giving her. She continues to make very slow and steady advances in oral eating as her reflux improves and she gets more trusting with foods and favors. It has now been almost exactly a year since she had her G tube placed and although I had hoped that she wouldn't still have it at this point I'm extremely thankful that she is doing as well and is as healthy as she is. Claire is climbing like crazy, jabbering away, and keeping us on our toes All. The. Time.

Owen continues to amaze us. He is maturing so fast and is such a sweet mentor and brother to Claire. It seems like everyday he says new things that I didn't realize he knew. He is a super quick learner and loves to play with our still fairly new cats Zo and Oz.

Learning to eat

November 2014

I find that Most days have fallen into a rhythm... A breath holding, clock watching, OCD kind of rhythm, but a rhythm. And then there are days like today that just make me want. to. cry.

Just when we think things are going well; progress is being made and vomiting has decreased, we have days like this that seem to set us back.

Feeding therapy up until now has left a lot to be desired. Granted, we have gotten a fair amount of good information and Claire has taken some real steps of improvement but I don't feel like we've found our 'fit'.

One day at a time, right??? One day at a time.

Things to remember

It's been a crazy yet amazing 14 months and I wish it hadn't taken me this long to finally write to you...but... You've kept us a bit busy. You are growing up so fast and any day now you will be walking on your own. It's a bitter-sweet milestone in my eyes. When your brother was learning to walk someone told me that as soon as he started walking on his own that the time would really start to fly by, and that he would go from being my baby (who needs me for everything) to an independent toddler, learning how to do things on his own. It was true. Although I love seeing you both grow up and see your personalities emerge, I will always think fondly (and miss) the short time I had to hold you in my arms and rock you to sleep.

While I still have you as my baby I want to pass on some feelings and advice (before I forget them).

1. You, my dear Claire, are the epitome of the beauty in the human spirit. Your strong will and love of life has pushed you through times and trials that many wouldn't have made it through. You are a constant reminder of what it means to be resilient  and I will forever look up to you for that.

2.  You are stubborn. I've known that from the beginning.  This can be a great asset, but don't let it be a roadblock in your life. Trust others.

3. Your father and I have fought hard for you since before day1. We always will. If you allow us, we will be your biggest fans and constant supporters. No matter what.

4. You will make mistakes. We all do. But in this department, less is more so learn from them and even if it seems like a huge, unforgivable mistake- refer back to #3.

5. I hope you learn to see, feel, and experience the beauty in real food. Prepared with love. For you.

6. Go with your gut, it's rarely wrong.

7. Never judge people. Period. You never know what's going on in their lives or what they've been through.

8. Becoming a mother changed me. Becoming your mother changed me even more. I truly hope that one day you get to experience the indescribable love you feel for your child. And when you become a mom and think, "wow, my mom did all this for me?"... Well... Your welcome.

9. There is nothing quite like getting you hands dirty and digging in the soil. Regardless of what field you choose and how technological the world get, always make time for getting back to nature.

10. Keep an open mind.  Despite what our society portrays, we don't know everything. There are forces greater than us and what you believe is up to you, but respect the beliefs of others, whatever they may be.

11. People will always remember how you made them feel. Never forget that.

12. Don't be afraid to fail.

13. Rules are meant to be broken. Except mine- don't eff with mine.

14. Spread the love. The kindness, compassion, and expertise of countless people have gotten all of us to where we are today. Make a difference to other people. You may never see the impact you have on them, but they will.

And above all, know that 'the greatest thing you'll ever learn is just to love, and be loved in return'
      (Bonus if you can name the movie)

Birthdays and anniversaries

Once again the busyness doesn't end. We celebrated Owen's 3rd birthday in March, Claire's 1st birthday in April, and mine in May. June 9th marked the year anniversary of bringing Claire home from the NICU and June 12th was Jake and my 9th anniversary. Phew.

Now to enjoy the summer.

Baby steps

To pretty much anyone but us this picture looks... Well, average (cute, but average). To us this picture signifies serious progress. For a baby with a massive oral aversion getting anything into her mouth is a major accomplishment... But then you add to it the presence of some food on her finger... And we have a huge baby step in the right direction. Yay Claire!

The days go by

The days seem to go something like this nowadays....

I reluctantly drag myself out of bed and pump before jake leaves for work... While jake gets Claire her first feed of the day (which she may or may not be awake for). Owen is usually up at this point and eats some breakfast while I'm pumping, eh- what the hell, it's natural right?

From here on out, anything can happen. Owens birthday was last Friday. After I had finished Claire's second Gtube feeding she had fallen asleep in her bouncer so I figured this would be a good time to do some birthday crafts with Owen (and by crafts I mean cutting balloons out of colored paper...). We gather the scissors and paper and within about 3 seconds he falls off the chair he is standing on at the bar (yes, mom of the year award is in the works) and scrapes his hand...Owen starts crying, Claire wakes up and starts crying...I'm holding two crying babies and attempt to get a bandaid for Owens  hand and as I start putting the bandaid on (while still holding a crying Claire) she projectile vomits all over all of us (we usually call it spitting up but in all seriousness ummm...it vomit). Sweet. Now were all crying and wet. Somehow we all got clean and dry and the day went on. Happy birthday buddy.

Today on the other hand started out like this... I reluctantly drug myself out of bed, told jake I wasn't pumping because I was done (yes...done) and then we ate breakfast over the course of a few hours. Claire had a massive up the back blowout so I went to change her. In an effort to let some air drying happen I put a blanket down on the bed and let her roll around naked until she peed. Blanket changed, Claire cleaned, and back on the bed. Now comes the poop. More poop. All over her. Ok, time for a bath. Bath. New clothes, blankets, and changing table make over. Next feeding. Spit up. Poop. And we start all over again. And it's 10 am.

Luckily I have really cute kids... And they're good too...

Time heals all.

It was a week ago, (last Friday evening) that we finally got Claire discharged from the hospital. What was initially supposed to be an overnight stay ended up a four and a half day admission. I think it's safe to say that second thoughts were running wild through my head and worst case scenarios had become regular occupancies in my mind. Ever so thankfully I write this as both kiddos nap peacefully...  at home.

We had to check in at the same day surgery clinic at 6:30 a.m. On Tuesday for Claire's G-tube placement. When we arrived, the place was packed. Monday had been a holiday so there were that many more scheduled cases... Yay. After getting checked in Claire was given atropine since her anesthesiologist routinely gives this drug to 'little babies' like Claire. Her anesthesiologist then askes us how bad Claire's reflux was and whether we thought she would be fine to get the IV after under general anesthesia... Since she could get aspiration pneumonia, a potentially life threatening illness if she had reflux before the IV and her airway secured.... Double yay. And here comes the first rush of second thoughts. Well, shit. What kind of potential life threatening situations are we putting Claire in for this essentially elective procedure???

After deciding that her reflux should be ok to get the IV after being asleep, and after Claire completely filled her diaper, we walked down the hall to the operating room and handed her off to the anesthesiologist. I don't know how many times a day parents hand their baby off to anesthesiologist a in that very hallway, through that very set of double doors... And wonder if they'll ever see their little one again. I know, I know it sounds super dramatic, but there are very real risks with any surgery and anytime someone goes under general anesthesia. Especially when it's your baby and especially when you've seen these 'minute risks' come to fruition in your own OR.

The tears began to flow as jake and I walked to the waiting room but after getting a muffin and a chai only a matter of minutes passed before her doctor came in to tell us the procedure was over and Claire was doing fine. About fifteen to twenty minutes later I was able to be with her in post-op. Overall she seemed to be doing good, you could tell she was in some pain but she was her regular feisty self. From there she was moved up to the infant med/surg unit and she stayed pretty sleepy most of the afternoon with pain medicine. They would keep her NPO (nothing by mouth) for 24 hours, then begin using the G tube for feeds. Jake and I went to a G tube class that night in the hospital to learn emergency and routine care of the tube while Deborah stayed with miss Claire in her room.

Up until Tuesday evening pain control didn't seem like much of an issue but then... Then It was. Every few hours the pain meds would wear off and she would get just enough more to keep her comfortable for awhile longer. We were supposed to be 'rounded on' by the surgery team early Wednesday morning so they could check Claire out and give the orders to start her feeds. Ten 'o clock came. Noon came, then 2 pm...we had anticipated going home by now and we hadn't even started her feeds yet...3 pm came...her nurse finally got an order to start her first feed of 25 mL. The plan was to do two of 25, 50, 75, and 100 mL (100 mL being a full feed for her). We did a 3:00 feed of 25 mL and finally saw a surgery resident around 4:30 that afternoon. Unfortunately she didn't check her incisions because it wasn't until almost 7:30 when jake mentioned to the nurse that Claire's bandage seemed budging that it was seen that her incision had opened and had herniated tissue. A surgical nurse practitioner came by around 9 pm, after Jake had already left for the night, and said that she would need to be taken back to the OR in the morning to have it fixed. This also meant she would have to go under general anesthesia again. And her feeds would have to stop. We were going to be here awhile.
Damn it. Cue in the next set of second thoughts. And worst case scenarios. Damn it.

Thursday morning the OR tech came to get Claire, I was able to carry her down to the front desk of the OR where I met the surgeon and anesthesiologist. Jake hadn't made it up yet so the Drs assured me that everything would be fine and they would fix her up in no time. By the

time I made it to the waiting room, in tears once more, Jake had gotten there. So we waited, yet again, for our daughter to come out of surgery and anesthesia.

The rest of ther hospital course was pretty un eventful. It was just a matter of increasing her feeds and ensuring that she could tolerate them. By Friday afternoon she was up to her full feed and doing okay... And we were all SO ready to go home (and mr Owen was SO ready to have us all home).

The past week has been a learning curve for us. We are getting back into our rhythm of what has become our normal and Claire is healing well. Other than not feeling the need to sleep through the night she is basically back to her old self. And not having to deal with (or worry about) the NG tube is nice. I'm hoping that by this time next week things will be even better and that we'll be working on some oral intake for little missy...

All in favor of a feeding tube...

I'm writing this post to you, miss Claire, because I know that one day you are going to ask me why. Why did we decide to give you a surgically placed tube to eat. Why couldn't we just feed you like a 'normal' baby.  Well, you are not normal, you never have been. You are amazing...and a constant inspiration to me. You may wonder if you'll ever be able to wear a bikini without the embarrassment of questions of your scar. You may criticize us for the choice we made but I truly hope after reading this you'll understand our decision and look at your scar as a badge of courage and survival.

The roots of this decision stem back from before you were even born. After being observed on ultrasound over a dozen times in utero we still didn't know if you would survive after birth. We'd been told by numerous doctors that you might not make it, but despite the odds you fought... And not only survived, but you thrived! 

Because of the concerns with your stomach and bowels you received all of your nutrients by IV until you were 5 days old. At that point you had a feeding tube ( NG) placed and you began receiving milk in tiny amounts (15 ml). From then on (for the first 6 weeks, the entire time you were in the NICU) you received a majority of your meals through the feeding tube. For reasons unknown to us it took you awhile to get to the point where you could take all of your feedings orally. There were many theories; your small size, the holes in your heart, an oral aversion... But in the end we never really figured out why the feeding piece was so tough. 

By your 48th day of life the NG tube was out and you were taking all of your feeds by mouth- and you were home. Every single day was a balancing act, but overall the first few months home went fairly smooth. You ate fairly well and contined to grow ok, and on your own curve. By the beginning of fall feeding time had become more and more of a struggle... You taking less and less at a feeding and us trying more and more to get you to eat. Where before you would take atleast some of a bottle from others, now you would only take a bottle from mom and dad, and even that was a struggle. We had been able to lower the calories we added to your milk in the summer, but now with you drinking less your pediatrician told us to start adding the extra calories again. We continued to feed you every 3 hours with smaller volumes because you simply couldn't tolerate big volumes of milk. The questions arose again as to why feeding was becoming such an issue- was it cardiac (your body was working so hard to make up for the holes in your heart)? Was it GERD? Another oral aversion? We didn't know. We had no-one to turn to for answers at the time, and all we knew is that you weren't eating and getting the nutrients or calories you needed. And it scared the shit out of us.

You will never truly understand this until you are a mother, but the most natural and maternal thing there is... Is to feed your baby. The most basic maternal instinct is to nourish your little one so she will thrive. And I now truly feel that one of the most difficult feelings as a mom is knowing that no matter how hard you try, you aren't. I was still trying to breastfeed as well as bottle feed you, and you- being the unpredictable little girl that you are- would never flat out refuse breastfeeding... So we kept trying and I would pump the rest of the time. Still, things kept getting worse. You would cry, arch your back, and most times flat out refuse to drink. We would all come to dread feeding time, praying that you would take some milk, any milk... and keep it down. We would keep track of how much milk you took at each feeding and by the end of the day you weren't even hitting your minimum intake. You would vomit frequently and sometimes lose an entire feed. We were lost. Your pediatrician was out of the country and we didn't know who to turn to. We were frustrated. No matter what we tried, you just wouldn't drink.  We we're desperate to get you nutrition. We knew what the next step had to be. 

I've said it before and no doubt I'll say it many times again, things happen for a reason. One day at work, (while at a very low point and damn near the end of my rope), a pediatric GI fellow came in as a patient. As soon as I heard this I pulled her aside and told her what was going on. She was very concerned and pulled some strings to get us into the clinic within the week. We tried a dairy free formula to rule out a lactose allergy and a medication to increase appetite, both to no avail. It was time to go back to the feeding tube.

On November 25th, your grandma's birthday, you were admitted for observation at PCMC so that your dad and I could learn the in's and out's of your NG feeding tube. We both had to put the tube in you before we could leave. Our hopes were that as your nutritional status went back to normal, and as you gained weight, that you would begin eating on your own and we could get rid of this damn tube....  Well... you went from eating some by mouth to essentially nothing once that tube was back. When we saw your cardiologist in December he thought that your PDA could be part of the feeding issues, (and since the PDA hadn't closed on it's own at this point is wasn't going to). So on December 19th you had a heart cath in which Dr Grey put a metal coil in the 'hole' to close off the PDA. So now that your heart 'stuff' was taken care of we thought that maybe you'd start eating better orally...

You are in feeding therapy currently, as well as physical therapy, and a patient in the neonatal follow up and follow-up-nutrition (FUN!) program at PCMC. You are an amazing fighter and I have no doubt that you will be eating 100% orally on your own. Just not yet. I think we all have to be patient and not rush you- and you do an amazing job at letting us know where your boundaries are...we just have to follow them. NG tubes are meant for short term use and are known to increase oral aversion (you have a tube stuck to your face that goes through your nose and down your throat 24/7, then when it comes out we have to put it back in) and it increases reflux...something that you have pretty bad. With those two things combined, and the fact that without a tube you just aren't making it nutritionally, we have come to the conclusion (with much research, advice, and soul searching) that the g-tube is the way we have to go in order to get you to be a true lover of food one day.

I have done pretty extensive research on tube weaning and intensive hunger based tube weaning programs (none of which are in Utah). We are going into this surgery with a plan to get you tube free as soon as possible. But we don't really see any other way around it. So...this is not a decision we have come to quickly or lightly. Know that it has been an extremely hard decision for us and we feel that we have tried pretty much every other option that we (and others) can think of. We also know that you are a fighter and that everything that life has thrown at you, you've beat...and you'll beat this too. We'll beat it together.

Growing up

There is something so beautiful and poetic about watching your child playing from afar. Maybe it's that everything you see them do they are doing on their own with no input or influence from you... Maybe it's that you see the light in their eyes of discovery and imagination... Or maybe it's that we literally see them growing up in front of our eyes, no longer an innocent baby who needs your constant support but a growing individual who makes their own decisions. There is a definite bitter sweet that fills my heart as I see this little person grow into his own, with his own personality and capabilities that no longer need me like before.

Despite what seems to be a constant state of sleep deprivation I feel like I've come to truly enjoy the little moments when I'm still needed. Whether it's holding a little hand going down the stairs, tucking him in (yet again), or carrying him around, I can't help but feel the time fly by us. It's so easy to get caught up in daily chores that we forget about these little moments that matter most... And that I'll miss the most as he grows up too fast.