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

Kieran Patrick Beres

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
Lao Tzu

WARNING: This post contains some, but not all, details about my labor and delivery.  If you aren't interested in that... skip to the bottom 😃

Wednesday, November 1st:

9:00 am
We took out the trash, packed a few last things and tidied up the house... it was like we were about to go on vacation, but we were actually about to have a baby.  After a quick snack and one last latte, we arrived at Prentice Women's Hospital for our scheduled induction at 10:30 am.  I asked Brian to fill up my water bottle because I didn't know what they were going to allow me to have once we got into our delivery suite - I knew that they had warned me about not having the option to eat after check in.  We were greeted by the bubbly receptionist who happened to be fashioning blue glasses, nails and lipstick; she was a riot and informed us that we would be having a boy that day because of her attire.  She definitely set the mood for an upbeat day.  After a brief wait in the lobby, we met Shilpy, our first labor and delivery nurse.  She took all my vitals and informed me that she wasn't 100% sure of the plan as of yet, but that she would get me set up and ready for the doctor to fill in the gaps.

11:30 am
They stuck me three times before they could successfully get an IV started.  Unfortunately, my hand was the only good spot to put the line.  If you've ever had an IV, you know that they generally aren't comfortable.  When you couple that with a spot that flexes and is sensitive, it really stinks, but I didn't have much of a choice.  My parents arrived and we all waited anxiously to get the show on the road!

12:45 pm
The OB on call gave a quick exam and confirmed I was still dilated to 4 cm.  They would start a pitocin drip at 2 mL concentration and increase the dosage every 15-30 minutes based on my contractions.  Pitocin is a synthesized form of oxytocin which is the hormone that causes labor/contractions.  While I didn't know what to expect, I had read that pitocin caused contractions to be abnormally strong and fierce compared to the body's natural process of labor with oxytocin.  Again, I didn't have much of a choice so I prepared for the worst (mentally) and hoped for the best.  After the pitocin was started, I had an anesthesiology consult.  They asked about my plan for pain management and if I wanted an epidural.  I listened to the options and confirmed that my intention was to have no pain intervention beyond the natural coping mechanisms I had been studying and practicing for months.  The anesthesiology NP accepted my wishes but explained that I could change my mind about the epidural as long as I was able to sit still (through contractions) for 30 minutes.

3:30 pm
My pitocin drip was up to 14 mL concentration with contractions coming every 3-4 minutes.  Up until this point, the contractions were completely manageable and I was able to walk around, even dance a little to the Spotify mix I had made.  We were laughing and telling stories as things progressed.

3:42 pm
The OB broke my water.

3:55 pm
"Shit just got real" - Me
My contractions started to rage with a new intensity.

5:15 pm
Mom and Brian shared a wee dram of Glenmorangie while dad held my hand through the surges.

5:24 pm
The neonatologist who we initially met during our consult and who we ran into before our tour of the NICU, stopped into our room.  She was on call until 8 am and wanted to let us know she would be heading the team that cared for our child after birth.  It was so amazing to see her friendly face and know that she would be with us through this journey.  Before she left, she mentioned that knew I was attempting a medication free labor and delivery on pitocin; she gave me a pep talk that getting an epidural didn't make me any less of a great mama... she was induced with all three and had an epidural for all three.  Regardless, she was cheering me on.  We asked my parents to go get some dinner and we would be sure to keep them updated on what was happening. 

6:50 pm
The perinatologist who would be delivering our child arrived.  She did a quick exam and confirmed I had progressed to 6 cm.  While this was great news, it meant I still had 4 more cm to go and the contractions were getting kind of nuts.  She said that she would come back around 9 pm to check me again.  At this point, Brian and I had gotten into a routine.  I would lean on him during the contraction and then sit or lie on the bed to rest in between.  It was exhausting, especially because I hadn't had anything to eat beyond ice cubes and some honey sticks since 9:30 am.  Luckily, Brian was my pillar of strength once again.  He was so encouraging and loving - holding me, massaging my back, and reassuring me that I was strong and could do it.  At one point, I went through a contraction that really scared me - it was so intense I feel my body crippling under the discomfort.  I looked at Brian and confided that I didn't know if I could do it anymore.  "Yes you can.  You've made it so far and I know you can do it"  One contraction at a time - slow, deep breaths and relaxing thoughts.  Shilpey had finished her shift by this point and we were working with Ivette.  During these really tough moments, she echoed Brian's sentiments and between the two of them, I felt empowered to keep going.

7:58 pm
Something changed - the contractions reached a new level of insane.  The doctor needed to come.  I was 9 cm.

8:05 pm
10 cm.  This baby was coming.

8:15 pm
Roughly 6-7 big pushes later, Kieran Patrick Beres was born.  6 lbs 13 oz and 19.2 inches long.

Kieran means "dark one" in Gaelic.  While we knew that our baby would likely have lighter features, my best friend Lauren pointed out that this little man was going to be the dark horse of the race; an underdog who would rise up.  We already know he is going to be a fighter.  His middle name comes from his grandfathers; Patrick William and John Patrick.  We are honored and humbled to be able to name our child after two men who have been so influential to us and sources of strength and support in our lives.

I had accomplished my number one goal - I was able to deliver my child without the intervention of pain medications.  This goal took on a new meaning for me after we learned of our child's CDH.  First, I wanted to ensure that he didn't have any narcotics in his system because I already knew he would  have his condition working against him during the first moments of life.  And second, I wanted to be as mobile and clearheaded as possible so I could be a part of his care team; I needed to be another advocate for my child.  I pass absolutely no judgement against any woman who makes a different choice than I did to bring their child/children into this world.  I can honestly say that it was the most incredible, scary, overwhelming experience of my life - you do you to get that baby here. 

I was able to get a brief skin-to-skin experience and Brian cut the cord before the neonatal team took over.  Brian and I were just so overwhelmed.  We had prepared ourselves to be quickly separated from our child, but the team did everything to make sure we got some semblance of normalcy - it was amazing!  I'm not lying when I say there were over 15 people in the room between OB and neonatology, but everyone had a job.  Kieran gave out a big cry before the team intubated, but the doctor was great about giving updates along the way.  He was doing very well - our hearts were bursting with joy.

Kieran Patrick Beres - 11/1/17

While the OB team took care of me, Brian went with neonatology to the NICU at Prentice to put in Kieran's needed IVs and set up other life supporting tools.  It gave me so much comfort that Brian was with him every step of the way.  After Kieran was stable, Brian came back to the room and my parents joined us to reflect on the miracle that had just taken place over the previous 7 or so hours. 

11:45 pm
Brian accompanied neonatology as they moved Kieran from Prentice over to the Lurie NICU.  I ate a lackluster turkey sandwich (which tasted halfway decent) and drank some delicious ginger ale.  I was moved up to postpartum and Brian was able to stay with me.  We had become parents and we couldn't stop talking about it until well after 1 am.

Thursday, November 2nd - Days in the NICU: 1

After about three hours of sleep, Brian and I resigned to the fact that we were both awake.  After the nurse took my vitals, I tried to pump again (every 2 - 3 hours).  My goal is to eventually breastfeed, but as Kieran is treated for his CDH, it is going to be awhile before he can 1) tolerate breast milk or 2) feed from the breast.  Therefore, I will be storing up my supply until he is ready.  

Mom and dad arrived at 9 am and my best friend, Lauren, arrived with coffee and treats around 9:30 am.  We knew that they were going to be performing and echo cardiogram, so we rested and waited until that was completed at 12 pm.  When we arrived in the NICU, mom and dad were able to meet their newest grandson and we were able to meet some of the staff working with Kieran - everyone was pleased with his current state.  His oxygen levels were good and he was very feisty; apparently, he had already tried to pull out all his lines multiple times.  Feisty is good.  We learned that they wanted to move his central line (the main port where medicine is administered and they draw blood) from his umbilical cord down to his groin.  This procedure would need to be performed in a different part of the hospital.  The fact that they were willing to move Kieran out of the NICU at less than a day old for this procedure was a good sign; they were again confident that he was stable enough to tolerate it.  The procedure was successful.  The other good news about moving the central line down meant that it would be easier for us to have skin-to-skin contact with Kieran, which we are hopeful will happen in the next few days.  Brian and I opted to get some rest and let Kieran rest too before we returned around 9 pm to say good night.  

I'll admit, when we returned, it was really tough for me.  Within the course of 24 hours, my child had gone from safe and sound in my belly, to exposed and so vulnerable.   Seeing him fight his intubation and get upset, but not be able to cry, was truly crippling.  I felt absolutely and completely helpless and I experienced a new kind of sadness... that of a parent.  This small person was now the most important thing in my world and I love him more than life itself.  Not surprising, Brian was again there to boost me up and be strong.  He has been so good about explaining all of the medical procedures, monitors, IV bags, wires... etc and while I know this is just as difficult for him, he is exemplifying such an admirable strength that helps me too.  I love and appreciate my husband in a new and glorious way - I am in awe of his courage.  

We survived day one.  This is going to be a long journey and we are "cautiously optimistic", but we  understand that it is very likely we will have good days and tough days... a few steps forward and a couple steps back.  We ask for your continued thoughts and prayers as we navigate these first few days of supporting our child as he acclimates to this world and help him on the road to healing.  

 We are so grateful and thank God for giving us this miraculous gift.

"Making the decision to have a child - it is momentous.  It is to decide forever to have your heart go walking around outside your body."
Elizabeth Stone

A Prayer to St. Gerard Majella

Great St. Gerard,

beloved servant of Jesus Christ, 

perfect imitator of Jesus, and devoted child of the Mother of God, 

enkindle within my heart one spark

of that Heavenly fire of charity which glowed in yours. 

Because you bore,

without murmur or complaint,

the calumnies of wicked men

when falsely accused of crime,

you have been raised up by God

as the patron and protector of expectant mothers.

Preserve me in the dangers of motherhood,

and shild the child I now bear,

that it may be brought safely to the light of day,

and receive the sacrament of baptism.

Amen.

We are leaving for the hospital in one hour. xo