Our Little Christmas Miracle

Our true gift

"All I want for Christmas is you."

Mariah Carey

Saturday, December 16th - Total Days in the NICU: 43  Days at Home: 3

Apologies for the tardy update (again), but we were very busy bringing our son home!  The last week has been a whirlwind in a very good way.  Last week was all focused on feeding; he was tolerating his feeds via bottle every three hours well.  As of last Friday, the plan was to feed him as he demanded, either via bottle or me nursing him, through the weekend and the team would reevaluate on Monday.  If he had gained weight and his labs came back positive, we could realistically discuss going home in a couple of weeks (what?!).   However, when the surgical team stopped by they made mention that this was the most difficult part of the waiting game because it sometimes takes kids weeks, if not months, to get feeding down.  They assured us that we wouldn't be stuck in the hospital for entirety of that time, but it was possible that we would need to go home with an NG tube to ensure Kieran was getting the proper nutrition.  We think Kieran was listening because he decided to pull out his NG tube himself (little stinker).  Because he was doing so well, the doctors didn't think it was necessary to put it back in unless his habits changed.  

While we didn't want to get our hopes up, we also knew that if Kieran would be coming home sooner rather than later, we needed to make adjustments to our house.  When we found out about Kieran's CDH at 36 weeks into my pregnancy, all preparations to our home stopped so we could focus on arranging the correct care for him after birth.  So, while it would have been great to have a perfectly pristine home and nursery waiting, that wasn't the case.  We called in the forces (aka our parents) to help us tackle some big projects.  As of Sunday, we had scheduled the ducts to be cleaned, the rug and furniture to be cleaned and sanitized and the dogs to be groomed.  My dad also set up a moving company to come haul out some of the stuff in our second bedroom to storage so we didn't feel so cramped.  We felt like we could have the house ready by Thursday, if needed, for him to come home.  

When I showed up to the hospital on Monday morning (Brian stayed back to meet with the movers), the nurse practitioner reviewed that Kieran had done exceptionally well and they were ready to release him the following day!  I was flooded with emotions.  I was elated at the thought of bringing my child home, but we just weren't ready.  We needed a few more days to get the house clean and ready for an infant.  After several conversations with the team, everyone agreed that Thursday would work well to send Kieran home - surgery needed to follow up on a couple of things and we would continue to work with speech to ensure feeding was going well.  During the following days, Brian and I spent the most time away from the hospital than we had during his entire stay, but we knew we needed to take advantage of the excellent care to prepare for his arrival.  Our parents were kind enough to come down and help us clean our place from top to bottom (literally).  We are so grateful for their unending willingness to help us. 

Snuggles with Laurel

Thursday morning arrived and as we wheeled in his stroller, I felt like I wanted to start sprinting before someone changed their mind and decided it was too soon.  But I will admit, it was a very bittersweet day for us.  Over the previous six weeks, Brian and I had spent roughly 860 hours combined with these people.  The NICU staff had become family; we were sad to say goodbye and they were sad to see us leave... Kieran had acquired quite the following.  We spent the morning reflecting on the journey, giving hugs, and taking pictures.  Various members of the staff came into room 1410 to get one more snuggle with Kieran before we loaded him in his car seat and hit the road.  Dr. Porta stopped by to discuss some of Kieran's follow up appointments related to monitoring pulmonary hypertension (which Kieran showed signs of at birth, but seems to have resolved itself); Dr. Porta was the first attending neonatologist to care for Kieran.  On one of the first days in the NICU when I was especially emotional, Dr. Porta told me, in a matter of words, "I'm going to care for him like he is my baby until he is healthy enough to go home to be your baby again".  He confirmed, with a big hug, that it was time for him to be my baby again.  Once again, I did my best to control my tears.  But this time, they were tears of joy... it finally was settling in that we were taking our baby home.

One more cuddle with Mary Kate

We asked Mary Kate (one of Kieran's primary nurses) to page Dr. Shaaban in the off chance he was in the hospital and had the capacity to stop by - we were thrilled that he did!  He reiterated what a miracle Kieran was and how quick his recovery turn around really was; he acknowledged that the road was bumpy but our patience and presence had definitely contributed to his success thus far.  His kind words were very humbling because we've just been trying our hardest to be good parents every day.

Kieran and his BFF, Dr. Shaaban

And then, it was time to go.  Mary Kate helped us get Kieran situated in his car seat and he fell asleep immediately.  He has been such a trooper and we couldn't wait to experience our son outside the confines of this fishbowl.  We all shed some tears (except Kieran).  Leaving Laurel and Mary Kate, who had cared for Kieran consistently over the course of his stay, was truly difficult.  Brian and I were tempted to just pack them up, too!  Laurel, Mary Kate, Sandra, Jen and Kerri especially got us through this time.  In their own way, each one of them lifted us up when we needed it, comforted us, taught us and cared for all of us.  Each one of them will hold such a special place in our hearts and, for sure, Kieran will grow up knowing their names and faces.  We owe them so much more than we can ever give them.   

Mwah!

NPs, Kasey and Chris

Respiratory Therapy, Brian and Kyle, and Robin

Our team the day Kieran left

The first step out of his room, I looked at Brian and said "I feel like we are doing something illegal.", but that soon faded.  As we made our way into the main hospital and out of our protective cocoon of the NICU, we both agreed that we felt so exposed; there were so many strange people surrounding our little boy who had been so sheltered for the first month and a half of his life.  Again, I felt like sprinting to get to the car.  The trip home was smooth and the dogs were anxious to meet their little brother.  Ali soon after was fine ignoring him, but Marley took some time to not get distressed every time Kieran cried.  Now, he just keeps a watchful eye like every good big brother should. Our first trip to the pediatrician went well.  Kieran has some weight to gain, but that is to be expected considering he only just started eating by mouth less than two weeks ago.  Don't worry - he is up for the challenge and eating every two hours in quantities that astound me and Brian.  

And now, it is like we are just normal, frazzled, tired new parents and it is blissful.  It is almost as if it all never happened, like a dream.  While we wish we were going to Wisconsin for the holidays, it makes more sense to stay in Chicago and continue settling in after the last 6 weeks of insanity. Not to mention, the cold and flu season is especially bad this year, so you won't really see us leaving our house until Spring (direct orders from all of our doctors).  We will also be keeping visitors to a minimum for now.  While we would love for everyone to meet and cuddle our little guy, he still only has 1-1/2 lungs and we need to protect him as much as possible from getting sick.  We love FaceTime dates :)  Thank you to the Vaccaro family and Tia Mathew for feeding us this past week!  We appreciate every meal - it lifted such a burden while we went back and forth to the hospital. And thank you to everyone who has donated to Brian's marathon efforts - you've helped us raise $715.00 of our $1000.00 goal!  

I have to thank my employer, McMaster-Carr Supply, for having such an amazing maternity leave policy.  Not only was it so incredible to be able to be at Kieran's side every day for the past 6 weeks, but the fact that I get to spend the next 4-1/2 months at home with him is amazing.  As of now, Brian is going to continue to take FMLA to be home with us until mid January.  These are precious days together that we will definitely cherish. 

We will continue to use this blog to post pictures and milestones.  To all of you who have been keeping us in your thoughts and prayers from afar via this blog... thank you.  Thank you from the bottom of our hearts.  We really believe that this was a group effort and all of you gave us and Kieran strength to move forward and beat the odds.  We are so grateful for our little fighter.  I wouldn't say that we love our son anymore than other new parents, but we do have an earned appreciation for his strong cry that wakes us up at night, small coos as we change his diaper and just watching him breath as he naps.  We just feel so lucky.  Merry Christmas!

 

First Packer game

"You're off to great places! Today is your day!  Your mountain is waiting... so get on your way!"

Dr. Seuss Oh, The Places You'll Go!

http://foundation.luriechildrens.org/site/TR/Events/TeamRaiser?fr_id=1771&pg=personal&px=1936812

One Month Old and Eating Like a Champ

Thank you NICU nurse, Gus, for Kieran's milestone signage!

"There is no one giant step that does it.  It's a lot of little steps."
Peter A. Cohen

Tuesday, December 5th - Days in the NICU: 34

What a week! Our little guy continues to be a total rockstar and we are all so pleased with his progress!  As of last week, Kieran had started continuous feeds of breast milk via his NG tube (nasogastric intubation - a tube up his nose that feeds into his stomach) and was on a CPAP for respiratory support.  The goals were to 1) maintain feedings of 22 mL per hour in order to take the next steps towards oral feeds so he could 2) stop receiving nutrition using TPN via an IV and they could 3) remove the PICC line and, if his breathing was steady through it all, to 4) move off the CPAP to high-flow therapy.  Our little nugget... DID.  IT.  ALL.

As of Wednesday, Kieran's breathing was still very comfortable, so Dr. Matoba decided it was time to downgrade his support and move from CPAP to high-flow therapy.  While CPAP helped keep pressure in Kieran's lungs during the exhale, the high-flow pressurized the air going into his lungs.  This was a very smooth transition and he did great.  The best part about moving off of CPAP was that the bulky ventilator moved out of room 1410!  One goal down.

Because Kieran gained some weight, his magic number went from 22 mL to 25 mL, but regardless, he was successfully able to tolerate this level of feed, so his TPN was stopped and two days later, they took out the PICC line!! Three more goals - done.

The PICC line was stitched into Kieran's thigh and I didn't realize until after they removed it that the tubing that was actually inside his vein was quite long... like 6" long.  After my stomach stopped flipping, I exhaled a major sigh of relief and quietly celebrated what this meant- significantly reduced chance of infection, increased breast milk, one less cord/tube/machine and... PANTS!  Up until then, Kieran hadn't been able to wear pants because of the IV.

PANTS!

We were so excited to get his cute chicken legs into some pantaloons, but then realized that they are kind of a pain when you are changing yucky diapers every couple of hours.  We've moved back to onesies and swaddles (#lazy).  NICU fashion isn't really following current baby trends, so we will save the pants for when we get home.

The other bonus of no PICC line is that we could finally give Kieran a bath with soap and water! We had been giving daily wipe downs with warmed, premoistened cloths, but nothing beats a good suds and scrub... especially when you have never had one in your whole life!  Kieran had a pretty bad case of cradle cap, so our awesome nurse (and teacher), Sandra, suggested we give him a spa treatment with a warm, wet cloth to soften it all up.  I couldn't blame him that he fell asleep while we were slowly scrubbing his head with a little brush to get all that gunk up.  He tolerated the rest of the hospital bath very well and after all his neck folds were clean and he got a good lotion, he was ready for a long sleep.

Operation Cradle Cap

Tag team hospital bath

Post bath - fuzzy hair and pooped out

By Sunday, we were in a holding pattern with the continuous feeds.  One thing I've noticed during my time in the NICU is that not much happens on weekends as far as aggressive steps in patient care.  This makes sense because the attending physician in the unit on the weekends is not the same doctor as the one on rotation during the week; the attending physicians during the work week rotate every few weeks so you get some consistency - the weekend doctors want to maintain status quo for the weekday doctors.  That being said, we could tell that Kieran was hungry through normal queues (fists in the mouth, rooting... etc) and we didn't want to wait another day to push our agenda for increased feedings.  So, we asked Dr. Henner, who we were familiar with, if we could start bolus feeds.  A bolus is a larger volume/dosage that is delivered more quickly, whether it is food or medicine.  The ultimate goal was to acclimate Kieran's tummy to receive more food and faster so he could start feeding orally.  Dr Henner agreed that Kieran was tolerating the continuous 25 mL feeds, so we could try 50 mL over 45 minutes every 2 hours.  Kieran did really well and even showed signs that he wanted more, so the nursing staff shortened the duration of the feed from 45 to 30 minutes so he would feel fuller faster.   During these transitions, Brian and I were letting Kieran experiment with "oral care", meaning we would dip his pacifier in breast milk or give him a drop in his mouth to get used to the taste.  The kid was like a baby bird - mouth open ready for his next fix.  We so desperately wanted to feed him as much as he wanted, but kids with CDH need to transition very slowly during this process to normal feedings, so we tried to be patient. 

On Monday morning we met our new attending, Dr. Robinson.  He felt comfortable trying out some PO feedings; PO stands for "per os" which is Latin for "by mouth".  Brian gave him his first bottle with only a tiny 10 mL and Kieran sucked it down like it was going out of style!  We continued the 50 mL feeds via NG tube and integrated the 10 mL bottles every two hours.  We even stretched our legs with breastfeeding by working on latching.  Thank you thank you thank you to my lactation guru, Jen, for helping with this process.  You are my hero.  On the breathing front, we also dropped the high-flow pressure from 3 to 2!  Wins all all around!

Kieran 💗 eating

As they would say in the Showcase Showdown - and that's not all!  Today, Kieran was able to take as much from a bottle as he wanted and the remaining ounces were given via NG - he did great, taking about 40 mL at his first two feeds.  The total quantity and frequency also changed to 75 mL every three hours - this equates to a normal feeding pattern for a one month old baby of his size.  We are hopeful to move from bottle to breastfeeding tomorrow - fingers crossed!  The team also moved his high-flow down to 1!

Our new set of goals are to 1) breath on room air without assistance and 2) get up to full feeds via mouth.  It is possible that we could be sent home with an NG tube, but I'm confident in Kieran's gumption to keep eating like a champ.

One month ago, Kieran was undergoing major surgery at 5 days old and the month before that we had just learned that our baby was going to be faced with incredible challenges upon birth.  Looking back, it is incredible to reflect on how much we have accomplished as a family and the immense burdens this little infant has overcome while making it all look easy.  I will admit that I still have a twang of jealousy as I see the new dads carrying their empty car seats into Prentice ready to take their brand new baby home, but I'm also starting to see the light at the end of the tunnel; someday very soon, we will be carrying that car seat into Lurie and joyfully taking our little leprechaun home.

In other news, Brian is now out of the walking boot and doing physical therapy at home (and in Kieran's room); he hopes to be running again soon!  Unfortunately, because of this stress fracture in his foot, Brian needed to defer his 2017 Chicago marathon entry.  However, I'm so very proud to write that Brian plans to run the 2018 marathon as a part of the Lurie Children's Marathon Team to honor Kieran!  His goal is to raise $1,000 specifically for the NICU to help families like ours during their journeys.  Check out Brian's fundraising page here:

http://foundation.luriechildrens.org/site/TR/Events/TeamRaiser?fr_id=1771&pg=personal&px=1936812 

A special thanks to our wonderful Lurie staff!  Dr. Matoba, Dr. Collins, Dr. Henner, Dr. Porta, Dr. Shaaban, Dr. Robinson, Dr. Wu, Jen, Sandra, Mary Kate, Laurel, Kerri, Cyndi, Gus, Julie and Cailyn.  And thank you to Juliana and Julien Lamblin and the Varble Family for feeding us this week!  You all are too generous and we are so appreciative!  

Monkey on monkey on monkey

"Be humble.  Be hungry.  And always be the hardest worker in the room."
Dwayne Johnson

We Are So Very Thankful

Melts.  My.  Heart.

 "What I want is what I've not got, and what I need is all around me."
Dave Matthews

Tuesday, November 28th - Days in the NICU: 27

Happy (belated) Thanksgiving!  Brian and I have so much to be thankful for this year.  Not only do we have a beautiful son, but he is a tiny, bad ass, fighter of a kid.  Over the past week, Kieran has continued to make great progress with his feedings/nutrition and breathing.  Not to mention, Brian and I feel so fortunate to have spent close to a month together getting to know his little personality.

As of last week, the surgical and neonatology teams agreed that we could start introducing breast milk via a feeding tube, but it needed to be a very slow process to ensure Kieran's tiny, sensitive digestive tract could handle it.  After a couple of days, Kieran was doing so well that the team gave the green light to increase the increment bumps from 1 mL per day to 1 mL every 12 hours; as of last night, Kieran was receiving 18 mL per hour round the clock.  This is huge for a couple of reasons.  First, the more nutrition he receives from milk, the less intravenous nutrition - TPN and lipids - he needs.  TPN (Total Parenteral Nutrition) is a solution that contains protein, carbohydrates (in the form of glucose), fat, vitamins, and minerals and the lipid emulsion is fats.  These two liquids have done a great job of helping our little guy grow, heal and gain weight up until now, but the goal has always been to get him off them and on to breast milk asap.  As of two nights ago, he no longer needed the lipids and we are hopeful that by mid week (when he is receiving 22 mL per hour), we can get rid of the TPN, too.  Second, as soon as we reach the magic number of 22 mL per hour, we can start simulating 'full feeds'.  We don't eat continuously (even though sometimes I feel like I do), but rather we consume our meals in short bursts.  Kieran needs to be able to tolerate this kind of feeding before we can consider oral feedings and removing the tube.

If Kieran is able to get up to 22 mL per hour and they take him off the TPN completely, there is a chance that we could remove the PICC line later this week.  This is also HUGE, but these are big conditional statements.  The PICC line currently makes it very easy for the team to administer medicine if Kieran needs it (which he hasn't in some time), so we don't want to remove it until we are sure he doesn't need it any more.  The NICU constantly reevaluates the need for central lines like Kieran's because there is always a risk for infection.

As far as his breathing is concerned, he has been tolerating the CPAP well.  The cannula is an annoyance, but nothing compared to the breathing tube.  Currently, his vent settings are pressurized.  The doctors reduced the pressure on Sunday incrementally and he did great!  The plan is to reduce it again today.  If he does well again, the hope is that he could come off the CPAP and move to high-flow therapy.  This would involve another cannula, but it is less supportive than the CPAP.  All of these steps are trying to wean Kieran off hospital supported methods and adjust him to using his own body and so far he has been showing off!  His left lung is still doing most of the work; the x-rays of his right lung continue to show little improvement.  However, we can still hear breath sounds in the right lung, so some oxygen is getting in.  As of right now, there has been no word on if surgery thinks another bronchoscopy will be beneficial or not.  Please continue to pray for the development and improvement of his right lung.

Snuggles

We enjoyed a lovely visit with our parents this past weekend; everyone was able to hold Kieran and get some cuddles before heading back to Wisconsin.

 Our little guy is getting bigger and stronger by the day.  As we reflect back on the last two months, it is astounding how our life has changed and how we have moved through this awful, beautiful process.

We are grateful for... 

Kieran's tenacity and spirit.  He is already moving mountains and he isn't even one month old yet.  We are so excited to see how he continues to learn and thrive each day.

Each other.  Brian and I have become a fortified team and we feel like we can take on the world.

Our friends and family.  Whether you are near or far, your love and support have helped hold us up during this insane time for our family.  Every call, text, card, prayer and sentiment has helped us and we can never thank all of you enough.  Thank you especially to Dan and Stephanie Osten, the King/Gulu family and Carolyn Rehmer for feeding us this week... our diets start next week 😜

Lurie Children's Hospital.  We are constantly in awe of the incredible staff caring for our son... and caring for us, too.  Thank you to Sandra, Laurel, Becca, Kerri, Nicole, Jen (x 2), Dr. Shaaban and his entire surgical team, Dr. Matoba and Dr. Henner.

Grace Pawlowski.  Grace is my niece and she created an incredible poster with the hashtag #kieranstrong.  Our family signed it during the Thanksgiving holiday and we have it displayed in his room - everyone at the hospital is so impressed.  It definitely encourages us all!  Thanks, Gracie! And thank you Jackson for the beautiful card.

My goal is to continue to update everyone about once per week.  Every day is filled with baby steps and it seems appropriate to hold off on posting until I can provide a big picture vantage on Kieran's progress.  Again, we are hopeful to accomplish some big goals in the coming days (full feeds, removing the central line, move from CPAP to high-flow), but we are cautious to remember that our little guy is the captain of this ship and he will let us know what is working and what isn't.

As we enter into the holiday season full tilt, we encourage everyone to proceed with an attitude of gratitude and love.  We often forget during all of the hustle, bustle and stress what this season is truly about.   However, as we come and go from the hospital daily, we are reminded that so many families are challenged with health struggles daily but charge ahead with love and compassion.  The kids we see at Lurie's everyday are an inspiration and make us want to spread the same sentiment of courage and kindness.  Be kind to each other. 

"As we express our gratitude, we must never forget that the greatest appreciation is not to utter words, but to live by them."
John F. Kennedy

Big Steps Toward the Waiting Place

Thank you NICU nurses Nicole and Cyndi for this cute sign - look at his little footprint in the guitar!

"You are right where you are meant to be.  Everything is unfolding exactly as it should .  Your job is to breathe, be kind to yourself and quietly do what needs to be done."
Unknown

Sunday, November 19th - Days in the NICU: 18

I apologize for the delayed post.  Time in the NICU is a funny thing. When Brian and I first learned that our baby would be spending his/her first few months of life in the hospital, I anticipated the days to move at a sloth's pace.  I researched new hobbies, like knitting, and expected to be able to accomplished all sorts of things as I made the 14th floor of Lurie's my second home.  However, I have been shocked at how quickly the days fly by.  So while I had every intention of writing this post on Tuesday (and then every day after that), today is the first day that I feel comfortable making time to write and update... because there really isn't any down time.

So, what has happened since Monday?  A LOT.  The day after his bronchoscopy, Kieran's x-ray was only very slightly improved, but his breath sounds on the right side remained good.  While I had hoped to come in and have the x-ray be pristine (Brian knew better), it wasn't the case.  However, because Kieran didn't require any additional oxygen beyond room air, his breath sounds were good and all other vitals were stable, the neonatology team felt confident that it was approaching time to take a leap of faith and extubate (aka take his breathing tube out).  Ideally, Kieran's x-ray would have mirrored all his other vital signs prior to taking this step, but after talking to our team, they acknowledged that sometimes not all the pieces will be perfectly aligned before it makes sense to take the next step towards recovery and challenge Kieran to use that right lung more effectively.  We were told that extubation would likely happen on Thursday or Friday, as long as everything remained stable.

On Wednesday, Kieran was about the same, but the neonatology team confirmed they planned to extubate the following day AND he could start getting small amounts of breast milk via a feeding tube asap - insert overwhelming excitement and anxiety here!! This was HUGE news.  These developments addressed the two major roadblocks kids with diaphragmatic hernias encounter - eating and breathing.  Because the repair of a DH typically requires pushing organs into the gut that didn't grow there, shifting the stomach, intestines... etc, the repair can cause digestive complications and reflux.  The plan was to introduce very small amounts of breast milk, starting with 1 mL per hour, and then increase as Kieran tolerated it.  The other consideration with eating is that we need to make sure that Kieran is receiving enough calories from my milk before the IV can be stopped.  Because kids with a DH tend to work harder to breathe, they burn more calories.  So, it is going to be a balance of 1) what he can tolerate and 2) ensuring he is getting enough energy to support his functionality and growth - this will all happen very slowly.

As for breathing, the team wanted to address his fluid retention before the extubation - he was still fairly puffy from all of the fluids he had received during surgery and the immediate recovery period.  Besides the fact that he just looked uncomfortable (he was so swollen that his feet looked like mine did at the end of my pregnancy and he was practically unable to open his cute little eyes), retaining extra fluid can impact your ability to breathe because your lungs don't have the extra room to open.  Thus, Dr Matoba and our nurse practitioners decided to give Kieran a diuretic to get rid of the extra fluid; diuretics make you pee and as we soon found out, the diuretic they used worked very well on Kieran.

Mohawk like dad

 
By Thursday, he had lost a significant amount of water weight and deflated like Violet Beauregarde post Juicing Room.  In fact, it worked so well that the team wanted to give him one more day to shed some extra fluid.  We could tell when we arrived on Thursday morning that our team was very aware that we would be disappointed with the extra day of delay, but that it was for his own good.  Everyone wanted to set him up for the best possible chance of avoiding reintubation as possible, so of course, we were on board.

Friday morning arrived and I was nauseous with worry.  While I wish for nothing more than Kieran to come home healthy, my next biggest wish was to get that breathing tube out.  I was so tired of being afraid to hold my son and watching him struggle as he gagged.  I wanted to see his little lips and hear his voice - watching my child cry but hearing no sound  made me feel like my guts were being ripped out of me and there was virtually no way for me to console him or make him feel better. Not to mention, no one wants their kid to be doped up on pain medications and sedatives - I didn't spend my entire pregnancy eating clean and organic as much as I could only to have him subjected to these drugs.  I yearned to meet my child and discover his personality more than anything.  But as with everything else in this journey, we needed to prepare for the whole spectrum of possibilities.  Even if they did take the breathing tube out, there were no guarantees that he would be able to tolerate breathing on his own.  And even if he could tolerate it initially, that didn't mean he would for sure be able to sustain it.  All we could do was hope for the best.

Our wonderful, no-nonsense nurse, Sandra, gave Kieran a little pep talk and Brian played the Rocky theme song for him.  It was go time.  The team told us we could stay, but I didn't want to be present if things didn't go well after they removed the tube.  Once again, we retreated to the lactation room.  About fifteen minutes later, Sandra came to get us and confirmed that everything had gone well.

FREEDOM!

We cautiously walked back into his room and we were greeted with tiny little kitten squeaks.  The breathing tube had obviously wreaked some havoc on Kieran's vocal chords, but I cried happy tears as his tiny voice was the most beautiful music to my ears.

We happily traded in the breathing tube for a CPAP that fits up his nose.  The CPAP doesn't breathe for Kieran like the breathing tube did, but it is still hooked up the ventilator and assists him with breathing.  He will likely be on the CPAP for awhile as his lungs (especially the right lung) get stronger.  Now that we know our son isn't uncomfortable, it is so much easier to be patient with this process. 

Snuggles with dad

Well, hello there!

Sleeping on mom

"Hmmm... very interesting"

Since Friday, we've learned that Kieran really likes the Mamaroo (a fancy dancy swing like contraption) and we even got some skin-to-skin time today.  He definitely has a quick Irish temper, but as soon as we resolve whatever is bothering him, he is quick to calm.  His big cries (which are getting stronger by the day as his voice comes back) is a good thing to help open up his lung, so we don't mind a couple of good squaks throughout the day.  He's been upgraded to a full sized crib, so Brian and I went crazy at JoAnn Fabric to outfit his mattress with adorable flannel prints.  While we are less than thrilled about our extended stay at "Hotel Lurie", we are doing our best to make it feel like home for Kieran. 

While his right lung has slightly digressed since taking out the breathing tube, his vitals a still good and we've been told that this is going to be a very slow process - it can sometimes just take time for him to catch up.  Dr. Shaaban stopped in yesterday and today - his breath sounds are better today than they were yesterday.  However, if they don't significantly improve within the next couple of days, he may want to proceed with a more invasive bronchoscopy to inspect what is really going on in that right lung.  But, for now, he wants us to just focus on the present and we will evaluate as each day comes.  The neonatologist, Dr. Collins, said he was very pleased with Kieran's progress thus far.  So now, we are in what Dr. Seuss describes in Oh! The Places You'll Go... The Waiting Place.  Kieran receives regular visits from respiratory therapy and we are working to keep him moving around to help get whatever junk may be lurking in that lung up and out.  We ask for your continued prayers for KPB and his little right lung.

Thank you again to our amazing NICU team: Drs. Porta, Matoba and Collins, our incredible nurses and NPs: Jen, Sandra, Mary Kate, Laurel, Nicole, Cyndi, Anna, Becca, Chris, Kasey and Diane!  You all are appreciated beyond measure and we are so grateful for your constant care of our little fighter.

Thank you to Fr. J for our coffee talk catch-up and your constant prayer and guidance during this challenging time.  Thank you to the Chenery and Cantrell families for our delicious meals this week; they warmed our bellies and our souls.  xoxo

"The longer you have to wait for something, the more you will appreciate it when it finally arrives.  The harder you have to fight for something, the more priceless it will become once you achieve it.  And the more pain you have to endure on your journey, the sweeter the arrival at your destination.  All good things are worth waiting for and worth fighting for."
Susan Gale  

The Kindness of Strangers

Thank you NICU nurse Kerri for this adorable keepsake with KPB's little handprints

"Faith is the only thing I know of that is stronger than fear."
Joyce Meyer

Monday, November 13th - Days in the NICU: 12

Brian and I woke up around 6:30am - our minds were heavy with anticipation for the day ahead.  Both of us were hoping that today's procedure would allow Kieran's right lung to improve even just a little bit.  Our prior days had all started with physicians and NPs confirming there had been no change from the previous day or that the x-ray even looked worse.  We left the house with our best intentions to remain positive and hold on to the fact that the surgical team seemed really confident that this was going to be the ticket to get his lung going.

After a bit of confusion surrounding who would actually be doing the procedure and when it would happen, we received word that a Pulmonologist (lung doctor), assisted by her team, would execute the bronchoscopy bedside in Kieran's room.  As far as we understood it, this was going to be a very quick and easy procedure.  They would insert a small camera into Kieran's breathing tube, investigate the right lung and suck out any clots or gunk they could.  We opted to vacate the room and surrounding space because I needed to pump and I wasn't interested in having a front row seat to anyone putting a camera down my son's throat, regardless of the fact that he already had a breathing tube.  After twenty minutes of hiding out in the lactation room, Brian and I returned to his room only to discover that they were only able to remove a small clot, but they needed another camera because the one they had broke and they wanted to make another attempt with a different size tube.  So now what was supposed to be a five minute quick in-and-out, was turning into a hour long or longer ordeal.  This is a great example of how the hospital time continuum creates a scenario equivalent to emotional waterboarding for anxious parents.

After turning my back on his room to ignore the fact that I could see the inside of his throat on a television screen and quietly existing in a state of self denial that tears were streaming down my face,  our wonderful new attending neonatologist, Dr. Matoba, encouraged us to get some lunch.  We wolfed down some Potbelly and thirty minutes later we received a text that we could come back up to the room.

The good news was that the camera showed a lot of healthy, pink lung tissue.  The challenging part was that there really wasn't any 'gunk' to suck out and they only got two small clots... if there wasn't any gunk, why wasn't his lung working?  Brian and I felt so deflated.  We were so sure that they would go in, find the river of slime equivalent to Ghostbusters II and eradicate this burden, allowing his lung to start working.  Dr Matoba did her best to ease our disappointment, highlighting that this wasn't a step back, but rather we just needed to try another strategy.

As I cupped my hand over Kieran's perfect little head, I managed to squeak out "I just want to fix him" to our nurse Jen.  Jen has been a Godsend.  Not only has she helped me immensely as a lactation guru, but she has also been a listening ear, confidant and advocate for our family.  She suggested I hold Kieran - it would be good for both of us.  Again, I was apprehensive because I knew he had gone through a lot today, but his vitals showed he was comfortable, so I jumped at the opportunity to have my baby as close to me as possible.  Jen suggested I hold him upright against my chest - "Holding a baby in your arms is for grandparents.  Holding a baby against your chest is for moms."  She was right.  He nestled right in under my chin and the moment I was able to lay my cheek against his soft, wispy hair, I felt whole again.  We rocked for about two hours like this.

I am complete.

 As my hand was on his back, I could feel his chest rumbling as he breathed, like when you have a really bad chest cold and you need to take a really deep breath and cough.  It's hard for babies to cough - instinctively they don't really know how to do it at this age, but I could tell a couple of times that he was trying to get something out.  I think I could have sat in that rocking chair all night, but we decided it was time to let him get some rest and we needed to get some dinner too, so the nurses helped situate him back in bed.  As I've mentioned before, Kieran really doesn't like his breathing tube and he doesn't like being moved, but this time he seemed extra mad.  As the nurse suctioned out his breathing tube, to our surprise, a large clot came out!  Brian was paying closer attention to this part and it seemed as if Kieran was struggling a bit to get good breaths, so he asked the NPs to come in the room, Kasey and Chris.  They opted to do some more invasive suctioning and more junk came out! 

Peek-a-boo!

Kasey checked his breathing with a teeny, tiny stethoscope and confirmed she could hear good breath sounds on the right side!!  Hooray!  Everyone took a turn listening with big smiles on their faces.  Whoever thought I'd be so elated for my kid to hack up disgusting stuff?!  Obviously, we need to wait to see what the x-ray shows tomorrow, but we are feeling so much better considering this progress.  Maybe the bronchoscopy disturbed things just enough to get stuff moving out or maybe Kieran just needed a good old fashioned chest cuddle from his mama (thank you, Jen).

After this emotional and physical victory, Brian and I decided we needed dinner... and a cocktail (I'm so glad I can have cocktails again).  We opted to head to our favorite neighborhood spot for comfort food - Tuscany on Taylor.  But, not before we ensured our buddy Kim was working behind the bar.  Kim has a larger than life personality - she's a straight-shooter with a heart of gold.  Brian and I have been going to Tuscany since before we were married and while the food is awesome, Kim is what really makes it feel like our very own cozy Chicago Cheers.  As soon as she saw us, Kim was on the other side of the bar, arms up in the air exclaiming congratulations and offering hugs.  We settled in - me with my favorite Chianti and Brian with a scotch and we caught up on our roller coaster day and what was new with Kim and her two daughters.

There was a couple sitting adjacent to us finishing up an antipasti while we enjoyed an asparagus salad.  The woman offered a kind smile and apologized that she didn't mean to listen, but couldn't help but hear that we had a child in the hospital.  We told them about Kieran's adventure thus far.  She offered her sympathies and told us she would be praying for us all.  Her husband was wearing a Kentucky sweatshirt and I heard them make mention of a hotel room, so I asked if they were visiting.  Turns out they were in town for the Champions Classic at the United Center - Kentucky plays Kansas tomorrow and they come every year.  We wished them a pleasant stay and finished up our meals... with dessert to go.  As Kim wrapped up our leftovers, she generously tucked an extra box of steaming, fresh pasta in the bag for us to enjoy tomorrow.  As if that wasn't enough, when we asked for our bill, tears welled up in her eyes and she told us that she and our new friends from Kentucky had taken care of our tab.  Speechless.  Brian and I were just so humbled by the generosity - hugs and tears around as we thanked our new friends, Laura and Bud, and our dear friend, Kim.  We promised them that we would be sure to pay it forward and that we would be cheering for the Kentucky Wildcats tomorrow.  Funny how a tiny baby can cultivate touching moments of love and kindness among strangers.

Prayers for a positive x-ray tomorrow morning.  Thank you to the Drott family for the Instacart delivery!

"Carry out a random act of kindness, with no expectation of reward, safe in the knowledge that one day someone might do the same for you."
Princess Diana

God Bless Kieran Patrick

"You are a Child of God... you are wonderfully made, dearly loved and precious in His sight.  Before God made you, He knew you... there is no one else like you."
Psalm 1:39



Sunday, November 12th - Days in the NICU: 11

Today Kieran Patrick was welcomed into the Catholic faith through the sacrament of baptism.  While Brian and I always anticipated a traditional baptism at our parish with our baby adorned in lovely white attire, we decided that it would be better to bestow this sacrament on him now in a time when we truly pray for God's love and blessings.  We felt so lucky that Fr. Jerome Overbeck was willing and able to meet us at the hospital early this morning on such short notice... as in 48 hours.  I've know Fr. Jerry for almost 18 years since my undergraduate years at Loyola University Chicago - Fr. J performed our marriage ceremony almost seven years ago and today he baptized our son.  While we would have loved to be surrounded by friends and family, it was a beautiful, intimate moment with just the four of us and I will never forget it. 

We were able to catch up for about a half an hour before Fr. J needed to head out to continue his busy Sunday and the attending neonatologist, Dr. Natalia Henner, was coming in for morning rounds.  Kieran had had another solid and uneventful evening.  Unfortunately, there has been no progress on the right lung, so the surgical team is going to proceed with the bronchoscopy tomorrow.  While there are no guarantees, we are hopeful that 1) the team will be able to get a better idea of what may be inhibiting the lung from opening and 2) they are able to clear out some of the junk.  We have no idea what time the procedure will take place, so tomorrow could be a very long day.

After a short break away from the NICU to watch a fairly lackluster Bears/Packers game, we returned to say goodnight to our little peanut.  Our amazing nurses, Victoria and Olivia, helped Brian hold Kieran for the first time and it was incredible.  I can honestly say that I've never seen Brian smile like he did tonight - it was so, so special. 

 This was a great way to end our day.  While we don't know what tomorrow is going to bring, we are cherishing these small, precious moments with Kieran.  We are grateful that he likes to be held.  Early on in our journey, before Kieran was born, we had been told that many NICU babies have trouble with any kind of stimulation - they can't tolerate the slightest touch without becoming agitated.  While Kieran definitely doesn't like his breathing tube (every time he gags on it, I cry) or being moved, his heart rate and respiratory rate have normalized once he is in our arms.  We are hopeful that daily story time, hand holding, head stroking and us just talking to him have helped us get to this place.  We long for skin-to skin contact and no more breathing tube, but we know it could be some time before we are close to these goals.  One day at a time. 

Tonight we pray for another uneventful night and a successful procedure tomorrow.  I hope you enjoy these treasured pictures of my two guys - my heart is so full.

"To be content doesn't mean you don't desire more, it means you are thankful for what you have and patient for what's to come"
Tony Gaskins

Slow, Baby Kieran Steps

"Today was a good day."
Ice Cube

Saturday, November 11th - Days in the NICU:10

Kieran has had some rock star days.  We are beyond happy with how he has fared only five days post operation.  This doesn't mean there haven't been some set backs, LOTS of tears, tough times or that we don't wish we could make major leaps and bounds in his recovery, but considering our little guy is only 10 days old and has endured a lifetime of physical tests in that amount of time, we are just elated with what he has accomplished.

Within the last two days, Kieran has had his chest tube, catheter and hand IV removed (win, win, win).   At this point, he still has his breathing tube and his PICC line (peripherally inserted central IV catheter - this is how he is receiving all his fluids, medicine and nutrition).  Unfortunately, Kieran's right lung hasn't decided to pep up... yet.  The doctors believe that there are some major clots and gunk in there preventing the lung from inflating due to the surgical trauma of the lobectomy.  We are taking the weekend to give Kieran's body some additional time to heal and open up on its own.  However, if as of Monday, the right lung hasn't improved, the surgical team will perform a bronchoscopy.  A bronchoscopy involves inserting a camera into your lungs for exploratory purposes and to remove said gunk.  Per conversations with several members of the surgical team, they feel that if this step is necessary, it will offer the boost that Kieran needs to get that lung open and working.  So, again... we wait and appreciate status quo days of him resting comfortably.

The highlight of the last 9 days since Kieran's arrival, happened today.  Today, I got to hold my son for the first time since his first moments of life and it was glorious.  I've held a lot of babies in my day, but today's experience was different and I was beyond nervous.  Kieran's situation is precarious, with tubes and lines everywhere.  I was so terrified that I was going to traumatize my little peanut or hurt him, that I was more inclined to just let him rest peacefully than embrace and kiss him like my maternal intuition was screaming for me to do.  Luckily, we had some wonderful nurses (Deb and Jennifer), along with Brian, who confirmed that we just needed to try.  Since the beginning of this journey, the doctors have told us that Kieran is going to steer this ship - if he didn't care for being held, he would tell us (via his heart rate and respiratory rate).  So, we gave it a shot and he did great!  I was able to hold my son for 45 glorious minutes and everything felt right for just a little bit of time.  I shed tears of joy... and so did some other participants in the room - it was a moving moment.

Our little family

Pure bliss with our peanut

There is definitely a steep learning curve when it comes to acclimating to daily life in the NICU.  I think it has been immensely helpful that Brian spent two years as an ICU nurse in Madison because he has an insight into pitfalls we needed to avoid when it comes orchestrating balance.  Not to mention, considering Brian was in the NICU for close to three months after birth, Brian's parents have offered priceless support on how they handled their challenging journey.  But it is no secret - this has been tough.  Of course we want to spend every waking moment with our child, but we know that he needs his rest, we need rest and taking vigil by his bedside isn't going to help him heal faster.

So, as of day 10, we have finally worked out a schedule to be with Kieran in the morning, take a break to nap and eat in the afternoon at home and spend the evening with him.  We spend roughly 8-10 hours a day at the hospital.  The first 9 days were very much "wash, rinse, and repeat" and we found ourselves constantly moving and running on empty.  There has been no shortage of advice from all directions that Brian and I need to take care of ourselves, too... as in we've been told this roughly 8,349 times and counting.  We know this comes from a place of love and concern, but we get it.  We know that we need to rest, but this is easier said than done and I promise that we are doing our best.  This is another aspect of our journey that we are learning to cope with and I think we are doing a pretty damn good job.  Are all our meals perfectly clean and balanced? No.  Are we getting 8 solid hours of sleep?  No, but what new parents do?  I can confidently say that we are working as a team to figure it out one day at a time and we will continue to get better at it with each passing day.

We look forward to another quiet day of healing and quality time with our little nugget and we are hopeful that with each day, our little guy is getting stronger and healthier.  Thank you to Kieran's amazing nursing staff (Jennifer, Deb, Laura, Ellen, Kasey, Linda, Chris, Mary Kate, Laurel, Victoria, Olivia) for your unending superior care.  Thank you to Sharmi Shah, Ernesto Ozuna and the Garcia Family (again) for feeding us delicious food this week.

"Sometimes the smallest step in the right direction ends up being the biggest step of your life."
Naeem Callaway

The Man Who Saved Our Child's Life

"You face your greatest opposition when you're closest to your biggest miracle"
T.D. Jakes

Tuesday, November 7th - Days in the NICU: 6

Dr Aimen Shaaban is the man who saved my child's life.  He is the doctor who led us to choose Lurie Children's Hospital and we are so glad that we did.

We arrived at the NICU around 9am so we could spend some quiet time with our son before his big day.  We whispered loving thoughts and prayers, smoothed his auburn hair and told him how proud we were of his strength and resilience.  Kieran was collected by the anesthesiology team around 1:30pm.  Dr Shaaban came in to meet us prior to surgery and again thanked us for entrusting him and his team to care for our child.  His demeanor was so warm and genuine; Brian and I knew that he was going to take the best possible care of our little peanut.  He reviewed the plan again, confirming that they hoped the surgery wouldn't require an incision in his belly or chest and that they could do the repair with cameras.  However,  they would update us throughout the procedure on how things were progressing.  After they wheeled his little bed out, I had a good solid cry and we prayed for a smooth surgery.

Our parents were kind enough to come down to support us and help us pass the time during the surgery, so we met them in the cafeteria at Prentice around 2pm to head out for some lunch.

3 pm
The surgical nurse called to confirm that surgery had started and Kieran was doing well.

4 pm
The surgical nurse called again to explain that the repair would require an incision in Kieran's chest, but he was still very stable and doing well.  She would call us back in a couple of hours with another update.

6 pm
Another call confirmed Kieran had made it through surgery and they were prepping to close up.  He would likely be back in his room in about an hour.

7:45 pm
Kieran was back in his room and the surgical team was ready to debrief us on what happened in the OR.

Brian and I proceeded back up to the NICU to meet with Dr. Shaaban and his team.  Honestly, I was expecting them to tell me that more than half of his diaphragm was missing (which is why they needed to make the incision) and they needed to place a Gore-Tex patch to repair it.  The use of a Gore-Tex patch has a high rate of re herniation because it cannot grow with the baby's body, thus further surgeries are typically needed.  As it turns out, it was so much more than this.

To summarize very briefly, Kieran's condition presented a major curve ball; he was born with a right sided congenital diaphragmatic hernia with hepato pulmonary fusion.  Ultimately, Kieran was born with the hernia as diagnosed prior to birth that allowed the liver to infiltrate his chest cavity.  However, instead of just impeding the right lung from growing, the liver and the lung were actually fused and grew together as one mass.  This is a VERY rare condition and we were only able to find evidence of 14 other published cases in the world.  Unfortunately, it is also a condition with a very high mortality rate during the repair surgery. 

This is the part where Dr. Shaaban becomes our ultimate angel - he was able to separate the lung from the liver, move the liver back into the belly and repair the hernia without a Gore-Tex patch.  The surgical team did determine that it was in Kieran's best interest to remove the lower lobe of his right lung because the tissue was very thin and had holes - keeping it would have likely presented additional health concerns down the road.  He explained that this decision wasn't made lightly and they concluded that it was the best course of action.  The doctor explained that Kieran has plenty of lung tissue to support his pulmonary health; he now had two lobes on both sides (your left lung has two lobes and your right lung has three).

Dr. Shaaban and his surgical team were strangers to us one month ago and yesterday they saved our child's life - literally.  How do you even begin to thank someone for that?  I was at a loss for words beyond a small "thank you" between sobs.  He shook Brian's hand and gave me a warm, comforting embrace and told us to go see our son.

While we know that we have a VERY long road to recovery ahead of us, we have been witness to a true miracle.  Had we not discovered that Kieran was going to be born with a congenital defect prior to birth, allowing us to prepare this exceptional team of highly skilled professionals, I honestly fear to think where we would be today.

Yesterday was the toughest day of our lives, by far.  The spectrum of emotions we experienced cannot be put into words and there were moments of pure relief and terrifying fear... I'm still feeling them today.  To see your child with tubes and IVs everywhere, knowing that he is experiencing pain... I would give anything and everything to take it all for him.  The emotional hurt we are experiencing seems like something so intense that we shouldn't be able to survive it.  But we are parents now and this is what parents do - whether their child is six days old or sixty years old.  We have to be strong for him, take each day as it comes and try to be as positive as possible.  He needs us to be strong.   However, as we know officially now, Kieran really is the dark horse of this race - he is our little warrior and we are so very hopeful that he is going to thrive with all of his guardian angels by his side. 

"For He will command His angels concerning you to guard you in all your ways"
Psalm 91:11

The Night Before Surgery

 
"You never know how strong you are until being strong is your only choice."
Bob Marley

Sunday, November 5th - Days in the NICU: 4
Well, we have made it four days in the NICU and Kieran is doing well.

I was discharged from Prentice on Friday (11/3).  I won't be doing aerobics anytime soon, but beyond some soreness, I'm doing great!  I feel very lucky to have escaped the labor and delivery with very little trauma to my own body.

Bee and Ba visiting Kieran

While we were picking up some groceries at Whole Foods after discharge, we learned that the surgical team felt tomorrow (Monday) was the right time to proceed with surgery to repair his diaphragmatic hernia.  This was great news because it meant that the team felt Kieran was doing well enough to endure the surgical process.  

In the meantime, my parents headed home and Brian's parents were able to come down to meet their grandson and spend some time with us in the NICU.

Grandma B and Papa meeting Kieran

Surgery is scheduled for 1pm.  The doctors feel Kieran is a good candidate for a thoracoscopic procedure (using cameras), but depending on what they find when they investigate the diaphragm, they may need to create an old fashioned incision to repair the hernia.  The procedure is expected to take between 2-4 hours. 

I never really got it when people talked about being proud of their infant.  Infants don't really do much besides eat, sleep and poo.  Well, I'm a convert. Brian and I are bursting with pride for Kieran.  He has been faced with such an incredible battle thus far and he has been exceeding all of our expectations.  Moving from the safety and comfort of the womb to the outside world for a baby is jarring as it is, but Kieran has faced challenges that few are demanded to experience.  Our little boy has been so resilient already and we pray for a successful repair and a safe road to recovery.  While Brian and I long for the day we get to bring Kieran home, we are trying to take each hour and each day as it is, continuing to trust that this is our journey.

We are expecting that there may be some setbacks along the way, but we are trusting that God is looking out for us and our little boy.  We feel so blessed to be supported by our church community during this trying time.  Thank you to Fr. Hurley and the entire community of Old St. Patrick's church.  Brian and I started our Sunday at mass before heading to the hospital and we felt so loved with the number of people approaching us to see how things were going and how Kieran was doing. 

Old St. Patrick's church - 11/5/17

  

We feel compelled to thank the doctors and nurses by name who have helped us up until now:

Mary Kamvisis and Linda Jagielski (our angel) - thank you to the two women who facilitated our transfer to Prentice and Lurie's so seamlessly, embracing our situation like we were members of your family.  We can never repay the sense of urgency and compassion you dedicated to our new family.

The doctors with Maternal Fetal Medicine - Dr. Michael Socol, Dr Susan Gerber and Dr Lynn Yee - Brian and I were astounded by your excellent bedside manner and willingness to orchestrate a labor and delivery as close to our ideal scenario as possible.  All three of you allowed us to be a part of our process and never once did we feel that you were dictating what we had to do - thank you for allowing us to be a part of the plan.  To Dr. Yee - thank you again for your cool, encouraging and supportive demeanor during my delivery.  You have no idea how helpful it was to my mental state. 

My labor and delivery nurses - Shilpey and Ivette.  Thank you for your supportive words and willingness to work with our birth plan.  Your kindness and and comforting natures helped me during the most intense moments of my life.  Ivette - thank you for supporting both of us mentally and physically, especially during transition.  It was so helpful to hear both you and Brian encouraging me to keep going and to focus on relaxation.

My postpartum nurses - Nav, Dara and Brooke.  Yep, postpartum is the most humbling time for a woman.  The vulnerability scale is at a 10 for sure and all three of you cared for me like a friend.  Thank you for helping me get through those first days after labor.

Neonatology
Dr. Ann Downey - Thank you from the bottom of our hearts.  From our first consult, you've been a comforting presence of knowledge and care for our child.  You have gone above and beyond and we were so thankful that you were the first one to help our child after birth... and thank you for your kind embrace postpartum during one of my toughest moments. 

Dr. Nicolas Porta - I'm not sure where to start.  Thank you for your care for not only our son, but for our entire family.  Thanks for encouraging me to take care of myself... I never thought it would be such a struggle to sleep and eat, but I think of you whenever I'm tempted to skip a meal or an opportunity to nap.  Most importantly, thank you for the professional camaraderie you have extended to Brian.  It has been such a comfort to him during these last few days and we are so grateful that Kieran is being taken care of by the best of the best.  

NICU Nursing Staff - Mary Kate, Laurel, Jennifer, Catherine, Tracy, Olivia, Amy, and Ann
There aren't enough words to express our gratitude for your constant watchful care of our child, not to mention your care and concern of our emotional well being.  Thank you from the deepest parts of our souls.

I cannot say enough about the caring and talented staff of Lurie Children's Hospital.  Brian and I know that Kieran truly is in the best care out there. There is something so terrible and visceral about leaving your child - being away from them when they are so fragile and small.  However, the only way we are able to get through this is by knowing that he has tons of super capable and talented people tending to him round the clock.

Special thanks to Brian King, George Gulu, the Garcia Family and the Cadavid Family for supplying us with some delicious meals this week!  It is so amazing to know that we have amazing food made with love available to us during these crazy days.

Kieran Patrick - 11/5/17

 Please pray for our baby.

"Two of the hardest tests in life: the patience to wait for the right moment and the courage to accept whatever you encounter."
Paulo Coelho