|Pike Lake - July 2018|
"Scars have the strange power to remind us that our past is real."
August 2018 - Age: 9 months
Before I fill you in on how life has been getting on for our family, I have to share some exciting news! Since we left the NICU, Brian and I have both felt compelled to help families like ours. It would bring us so much joy and satisfaction if our story could help just one family going through any part of their CDH or NICU journey, because let me tell you, it can be a very scary and lonely time. And because of this, we were absolutely humbled and thrilled when the Chicago Institute for Fetal Health at Lurie Children's Hospital asked us to feature our story in their Fetal Family Stories blog. They very respectfully asked permission to abridge our blog in order to offer a glimpse of our journey - you can see it featured HERE.
This ask reminded me of a promise I made back in mid December... so I must admit, I lied. I told you that I was going to use this platform to share pictures and to keep everyone up to date on Kieran's health post NICU and our life as new parents. Somehow, time managed to swallow up the insanity we experienced from October through December and it just resumed the normally scheduled daily chaos. But it has been a wonderful ride thus far! I'll give you a "brief" summary... that has taken me over a week to write! Buckle up - a lot has happened since January.
"And now we welcome the new year. Full of things that have never been."
~Rainer Maria Rike
The rest of January included a lot of continued hibernation and snuggling. Besides being a brutally cold winter, it was an especially rough cold and flu season; we opted to have very few visitors and we only left the house when absolutely necessary for doctor appointments. Beyond yucky cradle cap and some eczema, Kieran was an easy baby. Shortly after the picture above was taken, someone clued Kieran into the fact that pacifiers were so last month (literally) and he stopped using them, electing to use his middle and ring fingers instead.
January also marked Brian returning to work after three amazing months of togetherness. At first it was a little scary knowing that I was the only line of defense, especially during the nights, but we managed just fine and I ditched tidying the house to sleep whenever the baby slept. The dogs didn't protest.
|Dino! Thanks Steve & Gina Beres!|
"Your life does not get better by chance, it gets better by change."
~ Jim Rohn
|Happy Valentine's Day!|
At the end of January into the beginning of February, we started to toy with what was going to happen next. Prior to learning about Kieran's diagnosis, our master plan had been to move back to Wisconsin when the baby was a few months old and I was still on my maternity leave. We really wanted to be closer to family, lay down some roots, have a quieter life similar to how we were raised and find some space; we couldn't handle hearing Oasis blaring and our neighbors arguing through the walls anymore. After discussions with Drs. Shaaban and Porta, they concluded there was no good reason why we couldn't leave the Chicagoland area. Dr. Shaaban used to live in Madison and he had great referrals for us at all of the SE Wisconsin children's hospitals. Once we got that green light, things just started clicking into place... (pause)
(sidebar)...a secret. Brian has always been so good with kids and on multiple occasions, I've questioned him as to why he hadn't pursued pediatric nursing. He had his reasons, but after being at Lurie and experiencing what we experienced, a kind of empathy that I think can only be catalyzed through crisis with your own child or a child close to you did pediatric nursing to become an option for him. (resume)
Around this time, our good friend Adam, who works at the Medical College of Wisconsin, gave Brian a heads up about a job opening on the transport team with Children's Hospital of Wisconsin (CHOW). A transport nurse clinician is responsible for ensuring that critically ill kids (of all ages) who need to be cared for at CHOW but are located at a different hospital, make it safely from that facility to CHOW. These transports are completed via ambulance, helicopter and plane in cooperation with a respiratory therapist and, sometimes, a doctor. Special Ops of nursing. After some long discussions about "what's next", we decided that the best thing for our family was to proceed with our master plan and Brian threw his hat in the ring for the position. After a very extensive interview process, including multiple trips to Wisconsin, Brian was offered the position and we were officially on our way "back home".
|Brian's new flight suit|
Whhhhaaattt?!? If you know me, you know that I've been talking about "moving home" since the day I moved to Chicago... in 1999. I am a very proud Wisconsinite. I never imagined Chicago would become my home, but after almost 20 years, Chicago had not only become my home, but it had shaped who I was as a person. I suddenly became very afraid that I wasn't going to fit back in Wisconsin. However, one thing I promised myself after Kieran made it through the really scary times was that I wasn't going to allow fear control me. We were about to embark on an exciting adventure and as long as I had Brian, Kieran, and the support of our friends and family, all would be well.
Healthy baby - check. One person has a job - check. Pack up a condo, move, sell it, find a new home... - ummmm...
We started to put the relocation process into motion. Our realtor confirmed that he wanted to list as soon as possible in order to take advantage of the early Spring home buying wave, thus we needed to get going quickly. Besides getting our home in shape to move and sell, I needed to let my job know that I wasn't coming back from maternity leave as well as wrap up some insurance paperwork which required a copy of Kieran's birth certificate. I took an early morning Uber downtown to the Daley Center and, surprisingly, I was in and out with five copies in 10 minutes. Instead of jumping in a cab to make the 2 mile trip home, I opted to walk.
|A hidden treasure found on my walk home|
It was as if I was about to consciously uncouple from a life partner and it didn't hit me until that walk home that I had stopped truly observing my city years ago. As I walked down Randolph Street, I tried to use all my senses to drink in the day. I filled my lungs with the damp, gritty city morning smell. I listened to the honks of traffic, commuters squeezing in quick phone catchups on their walks to work, the calls of seagulls searching for bits of food, and the bangs of cars driving over the grated bridges with the river flowing below. These were all sounds, sights and smells that I had become so accustomed to - it was part of my daily soundtrack.
Memories flooded my brain. As the EL clambering down the track above me, I flashed back to August '99 - I was back in my freshman dorm room waiting to meet my random roommate, Sharmi Shah. The windows were propped open and I could hear the Red Line passing every 15 minutes - how was I going to learn to live with all that noise? As I cut over to Madison Street, fast forward to June '10 when people flooded into the streets of the West Loop, including me and Lauren Garcia, after the Blackhawks won the Stanley Cup. As I continued to walk, smiling the whole way, I recalled so many fun highlights, appreciating the beautiful life I had made here. I was raised in Wisconsin, but I grew up in Chicago.
I took the opportunity to stop for a Stan's donut and coffee - duh - and made the last 1/2 mile journey to the corner of Ashland and Adams. By the time I got home, I felt at peace; my walk was a cathartic way to deal with the anxiety I felt about leaving and it was also the first time I had spent any semblance of time away from Kieran. While I was beyond sad to say goodbye, it was time to create new adventures with the new dude in my life, knowing that Chicago will always be a part of me and that I can always come back.
There was still the issue of quitting my job to deal with. Technically, my maternity leave didn't end until April. However, my company had been so incredible to our family, not only over the past few months but over my entire 8 year career, that I wanted to give them ample notice that I wouldn't be returning. As I pulled up to the office, a second tsunami wave of emotion washed over me. Where had the time gone? I was definitely ready to close this chapter of my professional life, but the friendships and connections I had made were, simply said, precious to me. I knew walking in that day that this was going to be the last time I talked to some of these people - people who were wonderful, smart and kind, but people who I hadn't necessarily developed enough of a connection to keep in touch. It was a wonderful afternoon, laced with saddness. I spent the next 2-1/2 hours strolling around, giving hugs, saying hello and goodbye in the same breath. Some people were surprised I was leaving, but others were not. Considering all of the companies I've left in my adult life, this was by far the best experience thus far - it was the perfect way to end scene. I left on a high note and that felt good. Thank you so much McMaster-Carr.
"Life is like riding a bicycle. To keep your balance, you must keep moving."
|Chicago Pride and four months old!|
|Pre move crew noshing on Indian food!|
|Kieran, Ariti, Sharmi and Brian|
|Uncle Nesto and K|
|Uncle George feeds K a bottle while we pack <3|
|Sharmi doesn't want to let go... :(|
March 5th arrived along with our parents and the movers. Our families have been so generous to us, it is difficult to put our gratitude into words. That day, mom cuddled with Kieran so Brian and I could help our dads pack, load and clean out 11 years of life. By mid morning, everything was packed up and we were headed north, back to the Good Land.
|March 5th, 2018|
|March 5th, 2011|
|Our new view!|
|One of Kieran's besties, Jen|
|Chest x-ray time!|
|Observing his echocardiogram|
|Saying hi to Jen and Sandra!|
All in all, everything was in a holding pattern concerning Kieran's health. While his right lung hadn't expanded as we would have hoped, his left lung has been doing a darn good job compensating. Kieran's right airway is small and deformed, which we discovered shortly before we were discharged and not much has changed on that front. The plan was to continue quarterly check ups and just keep growing!
After our two whirlwind trips back and forth to Chicago, we were all ready to settle into normal life as much as we could. We started with Kieran's first Friday fish fry! Our household was also excited to celebrate my alma mater, Loyola University Chicago, making it to the NCAA tournament. Here are some pictures of normal life in Wisconsin for our little family - enjoying food, family, basketball and St. Patrick's Day!!
|Kieran's first Wisconsin Friday fish fry.|
|Happy St. Patrick's Day from Kieran Patrick!|
|Papa with Kieran and cousin Henry celebrating my sister's birthday!|
|Kjersti came to visit all the way from Colorado to meet Kieran!|
|We got our tickets! Final 4 in San Antonio with Sharmi!|
|Met up with my former teacher, Kori Vanderkooi!|
|FaceTime with Mommy!|
On Friday, when I boarded the plane in Milwaukee to head to Texas, I had hopes that 1) all flights were on time 2) Loyola won the game and 3) Kieran wasn't too hard on Brian. I got one out of three. If Kieran was old enough, this is where he would have said "Here - hold my beer..."
"Parenting is the easiest thing in the world to have an opinion about, but the hardest thing in the world to do."
~ Matt Walsh
While I was in San Antonio, Brian was inducted into a dreaded club: surviving baby's first sickness. The day I left - no joke - Kieran developed a little congestion and he started sneezing excessively. After 24 hours, he was getting worse and Brian decided to take him to urgent care. They diagnosed it as a virus, gave him a breathing treatment and sent Brian and Kieran home with an inhaler. I remember very distinctly asking Dr. Shaaban what we should do the first time Kieran got sick. "You should take him to the doctor." (insert eye-roll) I'm confident that any new parent would admit that the first time their child got sick it was a terrifying experience, but when your child has one good lung and spent the first few weeks of his life on a breathing machine, an upper respiratory infection when your spouse is gone, seems just unfair. Brian tried to shield me from just how bad it was, knowing that I would have come home early to be there. When I got home on Sunday night, I realized how bad it had been the previous 72 hours. After getting the lowdown from my parents, I wasn't surprised to hear how amazing Brian had been when this all started - I'll spare you the sad details, but it ended up being a brutal time. On Monday, we took K back to the pediatrician and they sent us home with a nebulizer; his chest congestion sounded like the rumble of thunder. Do you know how hard it is to get an infant to cough? I'm SO thankful that Brian hadn't started his new job yet because we were giving breathing treatments every four hours, steamy bathroom time with eucalyptus, Nosefrida (to the rescue) and endless rocking chair time. Unfortunately, the doctors suggested that we cancel our trip to Houston - this was an incredibly difficult decision to make because not only did we want to be there to witness little Miss B's baptism, but because Brian was her godfather. Another hard lesson to learn as a new parent - sometimes you have to make decisions for the sake of your kid, even if that decision hurts you or the people around you. But that is the promise you make the day you decide to become a parent; it isn't about you anymore. We promised Blakely we would make it up to her and her mom and dad, but they definitely understood why we couldn't make it. It took about two weeks before Kieran was back to normal. To be honest, Brian and I both expected to be back in the NICU, but our tough little trooper trudged through with resilience.
|First sickness - it sucked.|
"Can't you just try to squeeze in another ounce or two?"
"Other babies his age are drinking xx ounces per bottle and he is only drinking xx ounces."
"Have you tried using a larger bottle?"
Ugh. On and on. Passive aggressive parental shaming at its worst. Most of these visits ended with me crying in the car and Brian brooding with a mixture of empathy for me and anger towards the doctor. Quite frankly, it was the delivery that really got me. If one of the doctors would have said, "Listen. We don't know why he isn't eating more or why he isn't gaining as quickly as we would like. But, we want to help him - here are some ideas. What do you think?" I think we would have received that so much better, but unfortunately they must not teach that in medical school... or some people failed the empathy portion.
After a few weeks of lack luster weight gain, we agreed to start fortifying my milk with formula. I was super against this at first because I couldn't understand why my milk wasn't enough for him. But after I considered his situation and the fact that he likely needed more calories to breath with one lung, I got over myself, put my preconceived pillars of motherhood aside and started adding high calorie formula to every bottle. Hallelujah - he started to gain! BUT... he still wasn't gaining the quantity we wanted as quickly as we wanted. I was at the end of my rope, so I sought out the advice of my mama guru, NICU nurse Jen. Not only was Jen an incredible lactation consultant for me, but she is an incredible mama. First she encouraged me, then she confirmed that she had received the same lecture and finally she suggested we think about starting solids early. Done.
|Eating solids - thanks for the bib Aunt Monica and Uncle Tony!|
|Early Spring walk|
|Snuggle time with Daddy and Ba|
|Who loves solid food more?|
|Celebrating Papa's and Brian's birthdays|
We closed out April willing Spring to arrive and celebrating my wonderful father-in-law's birthday and Brian's birthday a little early. There was no shortage of cake.
"Here is my secret, a very simple secret. It is only with the heart that one can see rightly. What is essential is invisible to the eye."
~Le Petit Prince
May 1st marked six months since Kieran had entered our lives and it felt like with each passing month, my heart had grown a little bit. It finally stopped snowing (aka Peter, Susan, Edmund and Lucy had defeated the White Witch and Aslan had risen - excuse the nerdy C.S. Lewis reference). We celebrated Brian getting into the groove with his job, birthdays, my first Mother's Day and we had glorious visits with Kieran's godparents, Dave and Lauren Garcia, and Brian's brother and his family... including the incredible Miss Blakely. Blakely is 6 weeks to the day younger than Kieran; she was born the day before we left the hospital - that was a good week for our family.
|Whoa - a 6 month difference. We are so blessed.|
|Kieran loves Ali. Marley keeps watch.|
|My 1st Mother's Day|
|Daddy & Kieran|
|Blakely, Kieran and Great Grandma Carol|
~ Dalai Lama
In June we made two trips down to Chicago for another chest x-ray and echocardiogram. Again, everything was pretty status quo. The team agreed that we would come back again in Fall, but there was no need for another echo - yay! As always, appointments in Chicago meant seeing old friends - Kieran even had his first sleepover at Aunt Sharmi's house! All of the excitement from the day coupled with being in a strange place lead to an interesting (ie terrible) bedtime routine, but nothing a change of jammies (after throwing up) couldn't solve. Sigh.
|Check up with Dr. Shaaban|
|Brian in the Lurie lobby|
|Hanging out with one of K's favorite |
NICU nurses, Mary Kate
|Laurel and Mary Kate snuggling|
|Dr Nic Porta|
|Me and Brian with Sandra, |
another one of Kieran's rockstar NICU nurses
June also brought Brian's first Father's Day! Unfortunately, he had to work, but we celebrated with cards and gifts before he had to go to the hospital. We hate the fact that Brian misses out on a lot of holidays, however if he is going to be elsewhere, I love the fact that he is helping other families be together and stay together by caring for sick kids. The work he does is so important and I am so honored to be his wife. I'm confident that Brian is helping the families at CHOW the way we were helped at Lurie.
"Tomorrow is no place to place your better days."
~ Dave Matthews
July was the definition of Summer! Brian and I had a date night at Summerfest for Dave Matthews Band. It was the first time that either of us had been there in years... and I think it will tide us over for a few more years.
|Big date night at DMB (Summerfest)|
Kieran was too small to appreciate the 4th of July parade, so we skipped it and he was in bed before fireworks, but he loved meeting so many members of his extended family and friends who had been praying for him in those early days. We drank beer, ate brats and tried to stay cool in the sticky, hot weather - it was exactly what the 4th of July is supposed to be.
|Happy 4th of July! Cousin Henry and Auntie Katie play session! H: Let me just touch your face again...|
|We love James and Rebecca!|
|Who is that crazy Brit??|
|Pike Lake with Gardners & Friends|
|Kieran meets his first calf, Minnie|
|Kings of Radio at the |
Waukesha County Fair!
|Brian at work in Flight for Life helicopter|
"The best is yet to come."
~ William Shakespeare
We've just begun. BUT, as of 8/1 we are no longer homeowners. YIPPEE!! Before closing, I made a 24 hour trip down to Chicago to do one last tidy up and meet with the roofer. It was pretty bittersweet saying goodbye to the home I bought when I was 26 years old - unit 203 saw a lot of good times during my days and a lot of tough times, too. It went from a single gal's pad, to a married couple's abode, to a growing family's home sweet home. After I finished sweeping up and wiping down the counters, I did something kind of weird. I sprawled out in the middle of the living room floor and just was present for a few minutes (and took the picture below). I offered gratitude for all the life I'd lived and said farewell. I hope the new owner finds as much joy in that apartment as I did.
Holy cow! That was a long update, but I know I've forgotten loads of tiny tidbits. If you've made it this far - thank you and congratulations! I leave you with one last picture - the most amazing cowlick ever. During our level II ultrasounds just prior to Kieran's arrival, we could see his hair floating in my tummy. Call me a crazy mom, but it is going to take a lot for me to cut that curl. Baby man bun? Just kidding... maybe.
Everyday, I see my son's scar - a six inch fading reminder that my little boy came into this world with an immense challenge to face: to survive. And while I see this mark on him daily, I don't think about it like I used to because it is just a part of who he is now. But unfortunately, there are so many parents who don't have the same story to tell. I am so proud to remind all of you that Brian will be running the Chicago Marathon in October as a part of Team Lurie. You all have been so generous to us through your prayers, notes, meals, gifts... etc and we ask that you pass that generosity forward to other families in need. All donations made to Brian's fundraising page will directly benefit the Lurie NICU. Thank you so much for your consideration and thank you to all of you who have already supported this cause! You can donate HERE!
And finally, I really do hope to keep this blog alive to capture these precious days as we continue our adventures. I'm simply amazed at how many views our blog has received thus far and I've had some requests for my direct contact information. You can email our family at email@example.com. We welcome any questions you might have about CDH, our time at Lurie Children's hospital, life after the NICU... etc. Thanks for supporting our little family. xo C